Purpose of this Blog
This page is a forum for people who have chronic Parvo B 19 Virus. It is a place to share information on what has worked for you, tips on finding doctors and posting latest research. Let us keep this as a useful, educational site, not one where we go on and on about our aches and pains. That gets old.
Living with Chronic Parvo B19 Virus 
bopdilly said,
November 13, 2008 at 8:17 am
Excellent blog! Interesting article and very informative! I will necessarily subscribe for this blog. http://lowsalego.com/map.html
stacey turner said,
May 22, 2015 at 2:10 pm
Anyone interested in joining a Parvo B 19 support and solutions facebook group to share what is working and info we are learning? I am starting a group and would love to have you join me… my facebook name is stacey turner (McDoanld). Friend me and then send a pm saying you want in the group or send me your email address and I’ll add you to this private group meaning you will be able to see the posts, but your friends will not see it on your wall. https://www.facebook.com/groups/938126616247691/
Gretchen Miller said,
May 9, 2016 at 1:29 am
Hi Stacey,
I’ve requested to join your group. It’s coming on winter here in Australia, and my sore joints (not too bad, just ‘there’) have returned but in a way this is a relief as it explains why I’m so utterly exhausted, again. Three years now and I get hit at the same time every year and it takes months and months to recuperate. I seem to get a few months a year when I’m as dynamic as I used to be, and then… crash.
It’s completely weird. I’m starting to worry about its effect on other aspects of my health as I read what it can do to immunocompromised people… though as far as I know I am not that. Will it make me immuno-compromised though? There seems to be no real knowledge of the ongoing impact of it, in the medical system, so I’d be grateful for any studies I could read, regarding recurrence.
Thanks so much,
Gretchen
Judith said,
January 9, 2017 at 5:27 am
Hi this is Judith, I contracted 5th disease July/Aug 2009 and still have residual debilitating pain, fatigue, peripheral neuropathy and brain fog at times like now, LOL. I would like to find solutions other’s have tried. I did have two surgeries this past year that gave some relief from the neuropathy.
Nina said,
September 23, 2017 at 6:27 am
Hi Stacy, I just sent a friend request to the group. Will you be able to please add me?
I was diagnosed with Parvo four months ago and I have so many questions and concerns.
Thank you so much !!
Nina
Susan said,
July 25, 2015 at 9:42 pm
Hello,
I am new to this site and was diagnosed last summer with Parvo. I thought it was just a mild virus with some joint pain, fatigue, and headache. Sadly, I have found this to be completely incorrect. Right now as I type I am having another episode of this “crap” and feeling worse this time around. The headache just doesn’t seem to want to go away and my hands hurt so bad the other day I could barely work. For the past 2 weeks its been an off and on feeling of having the flu. Between the hands aching and this headache that lingers and refuses to leave, I find myself too tired to do all the things I want daily. And I am the type of person who hates to sit still. I guess my question is since I do not know anyone else with this is will these symptoms get worse over time and will the flare ups increase?
Thanks, Susan
KELLYANN said,
February 28, 2016 at 2:28 pm
Hi Susan, this is my first time visiting this blog and I too am desperate for answers and need support! I’m 55 years old and have had Parvo b19 for close to 3 years. I teach gymnastics and dance and got it from one of the kids with 5th desease. I was HORRIBLE in the beginning! SOOOO BAD! Saw RA Dr and was on different anti-inflammatory meds for 18 months. I have improved but feel it is still in me and whenever I get too stressed or have a cold, my hands and feet kill me and random itchy rashes start. I feel my immune system is terrible now. I was in Hospital with pneumonia 3 weeks ago and have had bad itchy rashes since before that. Like you I NEVER SIT STILL. I do believe this helps, because although I want to lay down sometimes, it’s good to keep going. Ugh….. my fingers are numb and tingling just typing this. I have to go teach Sunday school and then a gymnastics birthday party, so no time to go on, but I really hope to learn more from other people here who are in the same boat. Thanks for listening! KAOTICKELLY
Debbie Benshoof said,
February 28, 2017 at 6:04 pm
I have the same problems and also was diagnosed with parvo? i guess, and epstein barr virus. I was put on famiclovir, and i cannot take it, it makes me twice as tired and upset stomach and horrible ongoing headaches. Anyone know of something a person can take besides these antiviral drugs???
Cathy said,
April 30, 2016 at 10:07 pm
Since I found support from reading the personal stories on this blog, I’d like to share my story in hopes that it may help someone looking for ways to deal with recurring symptoms after their initial parvo B19 virus infection. In October 2014, I was diagnosed with parvo B19 virus infection (no lab work; diagnosed based on symptoms), and have since been coping with recurring symptoms. For over a year, I was seen by multiple rheumatologists, neurologist, and an infectious disease specialist, who were puzzled by the recurring symptoms because all of the tests they ordered came back normal (which among other things, included a positive result for past parvo, but negative for current parvo infection; normal brain and spine MRIs, no neuropathy, ruled out Lyme disease, etc.).
Finally, in February 2016, I was tested for Antinuclear Antibody (ANA), which came back positive. In short, I was told that my parvo B19 infection is long gone, but my body’s immune system essentially forgot to turn itself off and continues to attack my body, as if the virus is still there. I was prescribed a muscle relaxer (cyclobenzaprine, 10 mg) and was told that there are other medications, such as cymbalta, which is an antidepressant but can also help with symptoms such as joint and muscle aches, which I still get along with headache, lightheadedness, tingling in my limbs, occasional rapid heartbeat, and tiredness.
According to the rheumatologist who ordered the ANA test, there is no telling how long my symptoms may continue. Over-the-counter Ibuprofen does not help with my symptoms, and I’m refraining from medications with potential serious side effects, such as cymbalta. My current approach to coping with my symptoms is reducing my stress level (currently on leave from work), daily low-impact exercise, staying away from processed food, and maintaining a positive outlook on life in general. I still get flare-ups, but they are not as intense as my initial encounter with parvo. I’m just grateful that my symptoms are not getting worse and are somewhat manageable at this point.
Michele said,
December 28, 2008 at 5:44 am
I had the virus 17 years ago in my first trimester of pregnancy. My son was born with multiple disabilities from it. He may be the only known living survivor of a first trimester infection. He is very sick and medically involved. HE doesn’t walk, talk, has seizures, very developmentally delayed etc. etc.
My heart goes out to you. I would love to find doctor’s that are up on it during pregnancy. I am just now reading about what it can do to the baby while you are pregnant. Being he is 17 our doctors are still trying to “FIND a diagnosis” for him. I keep saying the virus…
I would love to talk to you or anyone else more on this
I live in Northern California
Constance said,
January 3, 2013 at 5:19 am
Hello. I know I’m replying to a very old post, hopefully you read this.
Has your daughter ever been tested for Lyme disease? It’s an extemely nasty bug, and once your infected it opens your body up to reactivation of dormant viruses or to any opportunistic infection. You don’t have to have a bull’s eye rash….less than 30% of people infected do, I never got one. And less than 50% recall a tick bite because ticks are about the size of a grain of salt and their bites don’t hurt so you don’t feel it!
Her symptoms sound a lot like mine. I finally got a dx in may 2012 after suffering over 20 years not knowing what was causing my symptoms. I have Lyme, mycroplasma pneumonia, hhv6, ebstein Barr, cmv, parv b19 and chly pneumonia.
If you decide to have her tested, please use Igenex lab in California. They are the only lab whose tests are sensitive enough to pick up antibodies to Lyme. If she has any Lyme specific positive or Indetermine bands, igg or igm, she has Lyme. Then please find a very knowledgable Lyme doctor…..that’s really extremely important because if she doesn’t get the right and long enough treatment her condition will get worse!
God bless!,
Constance
Leslie said,
January 30, 2013 at 2:53 am
Constance… 20 years. Hard to imagine. I’m so sorry. Have you found relief somehow now that you have a dx? I had a terrible case of pneumonia about a year before I got parvo. Now that I’ve been researching parvo and chronic fatigue, I’ve seen several references to mycroplasma pneumonia. In your post you list the many viruses you have been tested for. How were you finally able to reach diagnoses for all these conditions? And ultimately, does it result in any treatment? I do wonder why I wasn’t able to fight off the parvo, while generally people easily do and if I have an underlying condition contributing to my difficulties.
Thanks… and blessings for comfort.
Ray Odell said,
October 18, 2013 at 2:31 pm
Constance you have a point, with a tick bite, a lot of people on the site seem to be trying to fix the symptom, not the cause. some months ago I wrote a few lines about how I have always been very fit but a canine I belive had parvo, while I was try trying to feed her she coughed hard in my face and eyes, later she died, I have not felt good since. So ask ourselves the question, was it a Virulent strain of Parvo trying to cross over to humans? a Tick bite, a mosquito bit, What? So when and how did you get your symptoms, think back maybe one can find the cause. Otherwise it is like saying, I have a noise in my engine, oh I will put new tiers on the car! that will fix it! Good luck Ray
Cathy said,
December 11, 2013 at 7:08 pm
For all of you that have had a Dr. look at you like your crazy when you say that you have been diagnosed with Parvo B19.
YOU NEED TO READ an article from the November issue of Readers digest ” My 11 yr. Engagement” the Issue is named “Are you normal or Nuts”
The article talks about a DR. that had Parvo…. it is VERY interesting!!!!! Maybe it could be found at readersdigest.com??
I have not posted in a long time, finding amazing results with NAET!!!! I feel like I have a life again 🙂
Take CARe, Cathy
Mary Grosso said,
February 24, 2015 at 1:48 am
He should be tested for Toxoplasmosis a DNA PCR test it is ssociated with Parovirus insist he be tested
Lisa Uys said,
February 1, 2013 at 12:17 pm
I have had a bad day. I am manage a restaurant and the work is very tiresome – specially because I am walking the whole day. I currently have inflamation in both shoulders. Just wondering – the doctor put me on voltaren tablets and said to take a painkiller. I also started using omega3 tablets. Now my question is whether there may be a once a day medication that will help??? I am in brisbane, Australia. Also is there changes i can make to my diet???
I feel misreable. Basically every day after work it feels like I wanna just get in bed and sleep and never get up again. This is not what I expected at the age of 36. Also , will it be fine for me to excersise?? I have already spent so much money on doctors and dont feel like i have been helped at all!!
Janey said,
May 29, 2013 at 7:31 am
Do you avoid going out in the sun and slap on loads of sunscreen? If you do, its possible you have Vitamin D deficiency which can make you feel utterly shattered.It occurs in Australia because people are so “sun safe”. A simple blood test can diagnose it. Vit D deficiency can cause thinning of the bones so a bone density scan is a good idea if you find you are deficient.
Oly said,
June 27, 2013 at 12:43 am
I’m a year after infection. Hasn’t been the best year, but this isn’t my first pony ride with ill health so by necessity I’ve had to know more about health recovery then I ever wanted. I’m going to list out my strategy that’s kept me functional…I believe I would have been well rapidly but I got tired and careless and I started to chronically under eat protein and wrecked my adrenals and thyroid function.
Epsom salts epsom salts epsom salts! Bathe in it and an oral supplement too, but not magnesium oxide because it doesn’t absorb as well as mag-citrate, or taurate etc. Also I’ve found that 4-5 tablets of dessicated liver tablets are an incredible tonic food supplement: vitamin A and more goodness in it. I eat virgin coconut oil for fast ketone energy and pastured organic ghee too. Cod liver oil, methylcobalamin B12 sublingual, methylfolate, general B, raw greens powder + digestive enzymes, vitamins D and a few thousand g of Vitamin C. Nightly doses of gelatin. I make tea and stir in a couple teaspoons to a tablespoon or have bone broth.
Otherwise, an anti-arthritis/inflammation diet is great. It’s a year after infection and I still can’t eat too much of the nightshade family without feeling my fingers get that achy swelling feeling and that’s even with having abstained from all the horrible polyunsaturated vegetable oils (soybean oil in particular is terribly inflammatory, seemingly above and beyond its poly/omega6 content) for several years.
If anyone has had their digestion/intestinal health wrecked with antibiotics, then make rebuilding intestinal health a priority because there is no good health without nutrition.
Good sources of information:
-do a search on paleo auto immune protocol. Dump wheat, soy and vegetable oils and nightshade too. May have to cut eggs/dairy too, but I haven’t
-“Fast Tract Digestion: heartburn” by Norman Robillard for Small Intestinal Bacterial Overgrowth diet protocol which is essentially low carb + easily digestible starches like jasmine or glutinous sushi rice. Also there’s an IBS version (only, DON’T eat unfermented soy, way too toxic a protein to the thyroid and inflammatory in general).
-“The Diet Cure” by Julia Ross. Starts off with a questionnaire to identify the various issues then she provides a chart that shows the Feeling/state, the craving it might correlate with (alcohol, sugar, caffeine, diet drinks etc), the brain chemical that’s low and the amino acid therapy dose to correct the craving. Terrific way to speed feeling better.
–Weston A Price foundation has a wealth of information related to traditional eating. If you are going to eat legumes, grains, seeds, then prepare them as our ancestors knew to do. Sally Fallon and Mary Enig’s book “Eat Fat/Lose Fat” has a nice emphasis on health recovery.
And there are more out there but the gist of it is to baby your body with low/no toxin foods while simultaneously pumping it full of nutrient density so that it can combat opportune infections and heal itself.
Mary said,
June 2, 2014 at 5:16 pm
Test for toxoplasmosis it can be associated with parvovirus B19 also should check if you have Hemochromatosis an iron storage disease (it is inherited) Drs. do not test for these on regular basis children can get this from their mothers invitro this also could cause also you could be depleated of all basic minerals due to infection or meds mangesium zinc calcium, boron chorium copper more get a good liquid mineral bathe or rub epson salts (magnesuim) onbody have son get a mri of brain look for ring shaped lesions get the cd look yourself Drs. are not familiar with toxo hemochromatosis Angelman syndrome is another disease that might be associated with all the above but need mri start givving your son fresh coconut milk gvie him coconut oil teaspoon a day eat pineapple papaya with seeds what I am talking about with toxo is a parasite it can come from cats rare meat vegetables well water wild animals coyotes more..
Mary said,
June 2, 2014 at 5:25 pm
wild oregano oil helps with pain in wrists knees neck shoulder it is a natural antibiotic if toxo is in the brain or lungs it is hard to detect but now they have dna testing for it if he has respritory problems have the sputum tested make sure his samples to be tested go to as CDC designated toxo lab there is one in Palo Alto Calif you could do a candida cleanse for him which might clear up some brain fog I know it is a lot but I have been doing intensive research on the above toxo hemochromatosis parvovirus B19 and Angelman syndrome and seen to all point to infection with toxoplasmosis
Mary Grosso said,
May 8, 2015 at 1:37 am
test for Hemochromatosis (serum ferritin, transferrin and
TIBC) it is an iron storage disease is inherited millions of persons have this association with other diseases toxoplasmosis is one causes all of these problems need a DNA/PCR test not just the IgG and IgM need MRI of the brain Physicians some time misdiagnose lesions in the brain caused by toxoplasmosis it is never to late have him tested Parvon is associated also but mainly if chronic will effect the bone marrow look all of this up also if you have hemochromatosis or toxoplasmosis it lt could be effecting the pancreas causing Diabetes
Leslie said,
January 12, 2018 at 11:02 am
I am Leslie. I had Parvo 24 years ago. After my daughters Brownie troop spread it on to another. It blossom out of control into Grand Mal seizures.with all the the typical symptoms earlier. What happened along with the seizures was a right side weakneakness that has gotten so bad now that I am 64. I can no longer open jars, I have had surgery on my hands my neck neck, hand, knee, my back has broken. I have a family disposition towrds diabetes but I have an unusual neuurathpathy my body itches eveery once ince in awhile. about 3 years ago my endocrinologist called me worried my red blood cells and platelets had dropped bellow normal. I didn’t think much until my husband was talking about how the doctors way back when dismissed the possibility of B19 and seizure were related then I started researching. Yours was the first that I came across with a long time period. I have also recently startly started sleeping as much as 18 hours a day, have had rashes again and a cold that will not away. I am extremely tied. My husband is angry at me because he is 68 and he needs help I use a four prong cane or walker I hope people who have chronic B19 stand up for themselves and not let the doctors think they are making things up. ( That is what they thought for me, I became angry angry and they actually had me hospitalized once) that was when my husband disbelief inhow I really felt changed and the doctors didn” believe it even more so. So stand up and don’t be angry when they don” listen find another doctor.i
Leslie said,
January 12, 2018 at 11:19 am
I am going to reply to my own blog. I reread it. You see all the the short repeat of two or three letters. Those are petite mal seizures. Not the wrong spelling. I blank out for a second do not know I have written it already and keep on going. right now I am going very slow and looking up at each word. Thought I would let people know,
serenamuse said,
January 12, 2018 at 5:44 pm
It is so important to find a doctor that will validate what you are experiencing even if they don’t have any answers for you. Mine will at least do her homework. At this point in time there is too much information about Parvo for a doctor not to believe you.
Tam Wedgwood said,
February 13, 2009 at 9:46 pm
My 15 year old daughter caught parvo virus 9 yrs ago and ahs been suffering from ‘flare-ups’ of a lupus-like illness ever since. She runs a fever, her joints hurt & feel hot, then swell. She often has a rash. Some days she cannot hold a pencil or tie her shoes. The first 2 years were the worst, she was so sick, had no energy & hurt everywhere, I had to carry her to the bathroom etc – now she is too big for that!! She has missed a lot of school. We went back & forth to Drs & hospitals for a couple of years, got tested for everything; no one seems to understand this disease. Finally they did say it might be viral arthritis triggered by the parvo & she may continue to get flare-ups anytime she catches a cold or gets over tired. We’ve found stress seems a factor for her also.
For the past couple of years it seemed to finally go into remission- she was getting fewer flare-ups and they were much milder, but this year we’ve had 2 big flare-ups already, she’s missed a lot of school again, and today, after her first week back, she came home & says her knees & hands are hurting again; her hands feel hot and they are swelling.
After these more recent flare-ups she has had zero energy, keeps fainting & going dizzy, terribly fatigued, she actually asked if her bedtime could be changed to 8 or 8.30pm! How many 15 yr olds want that?!
We went back to yet another GP last week. he tested for arthritis & inflamation (again!) and said the tests were clear – but we know this kind of ‘arthritis’ doesn’t show up like that – we’ve had these tests before. He tested for anemia, again she’s not anemic so she “shouldn’t” be this tired. Then they said she’s a teenage girl – maybe she’s not eating right! It gets me so frustrated that you can have a kid who is clearly & demonstrably ill & in pain & swollen & they say “the tests are clear there’s nothing wrong with her”!
This new doc is referring her to another hospital – hopefully they will know & understand about parvo, but right now I feel so disheartened – we’ve been here before, we’ve had all these tests, we’ve spent years going to hospitals & getting nowhere.
The school are being very supportive and cutting down on the amount of writing she has to do with her sore hands,exempting her from some work when she’s tired, but they want to make this ‘official’ so she can be exempted from the usual school attendance requirements (we’ve already exceeded the permitted sick days this year) but to do that we need a diagnosis. I can tell them exactly what this is – but getting a doctor to say the same instead of sending us for yet more tests that will come back negative?
I am frustrated, & so sad for my daughter to have this chronic illness. I’d read online that this type of recurring illness after parvo usually lasts for a 10 year cycle. She’s in her 9th year now, so I was hoping maybe this recent worsening is ‘the beginning of the end’ – but then I read online yesterday people who’ve been suffering with this for 18 years, 16 years…is there ever any end?
Ken Rynning said,
October 9, 2009 at 7:03 am
MINOCYCLINE! I have suffered with parvo since Aug 2008. The pain in my shoulders, hands and wrists was suicide inducing. Like the rest of us with it, I too got little to no help from doctors and their various medications. Since you appear normal, people don’t believe or understand what you are going through. This adds to a feeling of despair, depression, and lonliness. Then I discovered Minocycline. It is a antibiotic and it has turned my life around. I didn’t realize how bad my condition was until I started to get better. I still have some pain in my wrists and hands but it is manageable. I now have energy and stamina to fight this wicked illness. 100 mg twice per day with 5 mg prednisone is what is working for me.
serenamuse said,
October 9, 2009 at 4:38 pm
Ken, that is very interesting. I’d like to know if anyone else has had experience with antibiotics. I know there is concern with over using antibiotics – killing off good bacteria etc. Does your doctor have any of these concerns?
Tam Wedgwood said,
October 12, 2009 at 6:37 pm
I was interested to see your first post on this yesterday & in fact had put a sticky-note on my computer screen: “google minocycline”! But a few things puzzle me:
Like Serena, I’d heard taking antibiotics with parvo is a bad idea as it makes immunity problems worse. Also if all this is caused by a virus, why would an antibiotic work? I am keen to hear of any treatment that helps, but also believe that antibiotics are over-prescribed with a serious impact on world health. I am not questioning that it’s worked for you, I’m just a bit confused I guess.
Also what illnesses was is it (originally) developed for? How expensive is it? Is it prescription only & if so, are Doctors likely to prescribe it for a condition like Parvo or Chronic fatigue? How did you get hold of it?
kelly said,
July 7, 2011 at 12:14 am
I am a 31 yr old female who has been going through the same things, I was diagnosed with Parvo back in Feb 09 and have had problems ever since it comes and goes. The past 3 months it has not really let up, My wrists are extremely sore along with my lower back and very tired all the time. It started with every joint hurting but is not mainly in wrists and back. I have blood work done alot and somehow my parvovirus IgG is higher now then it was 8 months ago, I didn’t know this could happen, I am now waiting for my next dr apt! I also need MRI/EMG’s on both my wrists I can barely use them, and it is hard for me to work. I also have several cysts/tumors that have formed in my wrists I believe They started after I had cortisone shots inected in them. I will NEVER get the shots again! I hope your daughter feels well soon and I was sure hoping i was not one of the people who would get symptoms for this long, so I feel her pain its very hard and no one understands the typeof pain you have unless you expierience it yourself, it is the most painful thing I have ever had to deal with! Kelly
serenamuse said,
July 9, 2011 at 4:16 pm
We all understand your feelings Kelly and I am sorry. You know they can’t understand, how can anyone understand when even we have a hard time knowing what one day is going to be from the next? The nature of this disease is change. It is never consistent and even after all of these years I find my self frustrated because I expect my family to just be able to read me and know, okay mom needs to sleep today, she obviously is not feeling well. So often I’ve not really figured it out myself until I get really grumpy, mean and short with everyone, then pause and go oh ya, today is one of those days. I go off to my room and pretty much say see you tomorrow! Hang in there. I am sorry.
Mary Grosso said,
May 8, 2015 at 1:45 am
Test for Hemochromatosis. Serum Ferritin, transferrin, TIBC or the DNA test for such too much iron in blood also test for Toxoplasmosis thru a DNA PCR test not just the IgG or IgM comes from cats rare meat other animals vegetables read up on it my friend had cysts infeet given steriod shot in foot reactivated toxoplasmosis both can cause diabetes thru effecting the pancreas Parvovirus associated with Hemochromatosis
Ryan said,
February 18, 2019 at 1:29 am
Hi! I just wanted to see if you could give an update on where you’re at with your Pavo and how has it been since you last posted? Did stress of work and life in general cause flare ups?
Aly said,
August 5, 2011 at 4:31 am
Your daughter probably has CFS/ME- it’s likely that she may also test pos. for coxsackie viruses which cause a lot of similar symptoms. Where do you live?
Tam said,
August 5, 2011 at 7:31 am
Yes, she was diagnosed with CFS/ME & “chronic pain syndrome” in 2009 & we are convinced that originates with the parvo virus previously diagnosed in 2000 or 2001 (since all her symptoms & flare-ups began then). We were in USA when I last posted, but have since returned to Britain. She is doing much better now – still has to pace herself & still has pain, swelling & insomnia, but she is back in full-time school and living a comparatively “normal” life. She recently spent a week on an archaeological dig – that would have been unthinkable 2 years ago, but she even thinks the trowelling was good for her hands as the swelling actually went down.
She still takes her vitamins and a joint supplement and avoids additives, artificial sweeteners etc. I’m convinced the dietry changes & pool therapy are what made the difference. Also in our situation stress was undoubtedly a factor & by relocating we have left much of the stress behind. I thought i had a daughter who was invalided at 15, now at 17 she is “living again”, so there is hope for all of you out there & there is recovery from this horrible disease. Action is still needed however to increase awareness and educate doctors – too many don’t know how to help us.
serenamuse said,
August 5, 2011 at 4:00 pm
Oh I am so glad she is doing better! I love to hear that she has “her life back”! And how wonderful that you were able to make a change that left much of the stress behind. I do think that makes a huge difference, but so often it just isn’t clear how to make that happen in one’s life. Anyhow, am very happy to hear the good news. Also, I so miss England all the archaeology! Our family loved sifting through mole hills in search of treasure 🙂
Serena
Jesse England said,
January 1, 2012 at 9:22 pm
Tam,
I am a 21 year old female college student. I was infected with parvo virus in elementary school.when I turned 15, ironically enough, started getting the same symptoms as your daughter even though I hadnt had parvo in about 6 years. I began to have horrific ankle pain which ended up affecting all my joints.
i vommited 3 to 4 times a day as well as uncontrolable diarhea. No doctor really did anything for me except find a positive parvo virus b19 antibody. stress also made my symptoms much worse as well as weather change. When I graduated from highschool and moved into my own apartment things got much worse. My pain became unbearable, almost suicidal inducing. mmy pain got so bad one day I went to the e.r. I was accused of drug seeking. I was in urgent care or the e.r every week and treated horribly. no one believed me. I ended up seeing a great rheumatologist after I started having fainting spells which turned into sever grand mal seizures lasting almost 25 minutes. Urine samples showed that I was spilling alot of protein from my kidneys and I started having pleurisy which is inflamation of the pleural lining in the lungs and causes ALOT of pain. feels like a knife being twisted between your ribs when you take a breath.I was eventually diagnosed with systemic lupus. The parvo virus is thought to be one of the causes of systemic lupus and because lupus is estrogen dominant women, young women especially are usually the sufferers. An ANA blood test (anti nuclear antibody) test can be taken and most people with an autoimmune disease will have a positive result. However, many poeple with obvious lupus or RA have a negative result. Because your daughter is going through hormone chnages due to her age, and because she has had parvovirus along with severe joint pain I would look for other symptoms that lupus patients have such as skin rashes (I get strange white and brown spots on my stomach which is not a typical lupus rash). Typically a butterfly shaped red raised rash will occur on the face or neck or chest.Also look for speratic fevers which occur when there is no infection. Digestive upset, mood changes, seizures convulsions or fainting, worsening flare ups around menstruation, swollen and painful joints especially in the fingers, hips, lower back, knees, toes and ankles, abnormal hair loss and cognitive issues such as forgetfulness, aggression,and not always but a family history of the disease, frequent accidents, chest pain and foam on top of urine which may indicate the kidneys spilling protein which is easily detected during a routine urine sample. Because I had ALL of these symptoms and a positive antibody for the parvo virus my rheaumatologist diagnosed me with SLE ( systemic lupus erthymatosus which damaged my kidneys, heart, lungs and brain because instead of e.r doctors and my own family doctor didnt believe me when I said I was in unbearable pain, my disease progressed and went untreated. There are other types of lupus but if your daughter does in fact have lupus it sounds like it is systemic. I hope the best for her. Sometimes testing a hormone in the body called DHEA can help diagnose the disease. lupus patients have a low amount. You can get DHEA supplements over the counter and even iif she dosent have the disease it is helpful. I hope she dosent have lupus but if she does feel free to have her contact me and I can give her some helpful info because lupus can cause seveer psychological effects that are sometimes more painful then the disease itself. I hope I gave you some useful information and feel free to write back. best of luck and you will be in my prayers as well as your daughter.my email address is jengland1@wccnet.edu – Jesse
Jesse England said,
January 1, 2012 at 9:29 pm
Tam,
i forgot to mention stress and weather changes will cause a flare up along with hormone changes. another symptom ispainful canker soars usually on the inside of your cheeks but sometimes on the tongue or roof of the mouth. If she has lupus even if its mild her joints are more likely to become dislocated and broken bones as well as easy bruising. again, good luck and I hope to hear from you 🙂 best wishes, Jesse
Laurie said,
February 20, 2012 at 8:24 am
Jesse-
Your story sounds so familiar to me. I was diagnosed with Reflex Sympathetic Dystrophy sixteen years ago from my waist down. Then three years ago with Post Infectious Parvo Virus. I couldn’t believe these two odd illnesses had both hit me. The good news is that my family dr. knew about both and could get me treatment right away. For 16 years the RSD has not progressed, only flared up at times. However, the Parvo virus has knocked me on my butt several times. I feel like boxer losing every round. We have tried steroid bursts, depo medrol injections, countless anti-inflammatories, lidocaine infusions, opiods, but nothing is getting to the bottom of it. I too saw a rheumatologist to check for RA and Lupus, but all I had was bursitis in both shoulders and one hip caused by the Parvo she said. I know that stress and weather play a large factor in both there illnesses. I am a regular barometer! I lost my Mom in December and since then I have been in the worse flare up that I could ever imagine. I am thankful to God that she is at peace and out of all her pain and suffering, but my body went through so much stress watching her die and being with her for her last six days and nights. I didn’t realize it at the time because my body was running on adrenalin. It was only a couple of days later before the crash began. I can only work a few days a week now and they are so unpredictable. Prior to this I missed little time for these illnesses due to my aggressive medical treatments. I see a neurologist next week and will probably have some more tests done. I think I will check in the lupus again and also about antibiotic treatment. I eat well when I am not nauseas, and take vitamins. I am willing to try almost anything! I think that a lot of us are type A personalities and that could play a factor in our slow recovery?! I will go to Mayo or Cleveland Clinic for help until I can find some answers. I get tired of people telling me on “good” days that I look ok!!!!!!!! If this was an illness that people understood like cancer or heart disease they wouldn’t be doubting us or do skeptical of our circumstances. I just tell people that if you believe in me as a person, even though I can’t fully explain these illnesses to you because I don’t fully understand them myself, they are real diseases with real pain and suffering, please work with me to help me get through this or I can’t have you and your negative comments, actions and energy be part of my life. Simplify and Pray!
Chris reichenbaum said,
February 11, 2012 at 2:41 pm
I have had Parvo P19 for a month now..it started with cankor sores in my mouth, swollen ankles and feet and feeling overall aches & pains.
I had blood work done testing for Lupus and a myriad of diseases all came back negative. Then while searching on line I came across the Parvo p19 ( the key tip off was cankor sores in the mouth along with Lupus like symptoms) I was tested for the virus and it came back positive.
I’ve had very good responses with anti inflammatory’s…all natural. Tumeric Root Extract 500mg 2x’s a day, New Chapter,
Zyflamend herbal also an antiflammatory, MSM 1000mg, Glucosamine Chondroitin by Solgar and finall Nordic Naturals Omega-3 fin oil.
I’ve been slowly introducing Pillates and TRX work back into my weekly routine and I’ve been getting stronger and feeling better!
I woke up this morning with a cold and Googled Parvo P19 and colds and stumbled across this blog.
I read where Tamiflu can help cut down on the life of the virus if administered immediately the problem being thAt it takes time to diagnose this virus:((
I hope that I have helped you in some way..I read at it last between 2 weeks and two month’s and if you don’t take care of yourself it can become chronic:((
serenamuse said,
February 11, 2012 at 4:57 pm
Chris,
Thank you so much for writing and letting us know what has been working for you. It seems likely that you will not have a chronic case. Do take care of yourself. Listen to your body. Rest if you need to and eat high nutrient rich foods. All the best!
Serena
Chris reichenbaum said,
February 11, 2012 at 5:17 pm
Thank you for your support & encouragemnet Serena!
I’m not out of the woods yet..I’be been pushing myself too much and caught a cold.
What would normally be nothing to deal with, it has taken a lot out of me!!
Keep in touch and take care of yourself:))
Chris
Martha said,
December 30, 2012 at 5:52 am
I have had the “Parvo Syndrome” for about 8 months now and I have had the full work up for every type of arthritis, immune disorder, etc. I only have a positive antibody to the B19 virus. After about 8 months of being told that “there was nothing to do but take antidepressants, narcotics, and non sterioidal anti-inflammatory meds- I convinced my family medicine doctor to try a round of anti-viral medications to see if all of the “viral symptoms” would be alleviated. I could not believe that the fatigue, aches, and fever-like symptoms were relieved within four days. After a week on the medication, my joints were pain free. I could not believe it…. I have been an RN for 25 years and was so disappointed in the fact that none of the doctors that I went to (hematologist, gynecologist, rheumatoidologist) could categorize the symptoms as a viral syndrome without finding some magic blood test, xray, etc. that could say for sure that this is x disease. I don’t quiet understand it, but if it feels like a virus- maybe it is a virus. I have taken Valtrex 500mg one twice a day for 5 days then once a day as a maintenance dose. It is the same regimen as people with shingles and or herpes virus take to prevent outbreaks. I hope this information will be helpful to someone. I have been pain free for about two months now and I am so grateful. This “viral syndrome” disease process is really bad and the medical community does not understand it and does not know how to treat it. I do agree that rest, exercise, good diet, and prayer will help you heal your body.
serenamuse said,
December 30, 2012 at 5:59 am
Thank you for your post Martha. I am glad that as an RN you had the instinct to press for the antiviral medication. I had asked for that and was told by my doctor at the time that it wasn’t something prescribed for my condition…You are right; there is so much that they do not understand.
M. Slough said,
May 15, 2012 at 11:26 pm
Have you tried an Immunologist- Dr who specializes in diseases of the blood. Go to a teaching hospital where the doctors are most current on the latest thing
Narelle said,
December 2, 2013 at 4:13 am
OMG! That is nearly the exact story of my 11yr old daughter who is now 14 & a half! She is a passionate dancer & we have spent years trying everything & putting up with all the misunderstanding from everyone. We are trying to get sugar out more now on too of everything. It’s just a one day at a time but prob more like one hour at a time sort of life with her energy & possible plans etc. It’s drained me physically & emotionally bring her mother & drains her every other day. She also had EBV & Blasto-Cystis Homini around the same time & I did much research on them but only just researching more on Parvo now. My heart goes out to you & your daughter & family!!! X
Chuck said,
January 2, 2016 at 1:33 pm
I was diagnosed with rheumatoid arthritis by six different Drs 8 months ago.my joints were hurting so bad I couldn’t work test kept coming up positive for Lyme but the dr would ignore it . I went to several more Drs and all said the same.While reading a blood report from one of the infectious disease Drs parvo and Lymes came up. I called the doctor ask why they weren’t being treated. He said he didn’t think it was bad enough.
Frustrated with the Drs I started reading on line.A women wrote that she was misdiagnosed for years. She said read the book healing Lymes by Stephen Buhner. Started doing a herbal protocol and a product called Results RNA . It’s been two and half months and I’m really making improvements. It’s slow and frustrating but at least I’m not at the mercy of the Drs . They never listened to my needs seemed like all they wanted to do is dump more meds in me. Read the book it is worth it!!!
Stacey Turner said,
August 24, 2017 at 4:24 am
It breaks my heart to read all of these stories of continued pain for all of these years. I contracted parvo about 4 or 5 years ago and recovered in about 9 month. I thought I was going insane and could not figure out why I was in so much pain. I would be more than happy to share what I did to recover, but sadly, most won’t listen. It seems to simple and therefore must not be true. I have helped others recover as well and it has been a passion of mine to help families take back control of their health for the last 14 years. Don’t lose hope!
Kristin Kohlberg said,
August 28, 2017 at 1:35 am
How did you get yourself better. I’ve been sick since 2009. Have tried many things. Diet has been hardest for me to stick to anything super strict. Please let me know how to find out what helped you!!!
Thanks sooo very much,
Kristin
Elyse S. said,
March 26, 2018 at 2:53 am
Stacy, I am so curious what you did to recover? I have been dealing with Parvo for 5 months. I’m over it! Please share!
Thank you,
Elyse
Stacey Turner said,
March 26, 2018 at 4:13 am
Hey friend. So sorry yo are still dealing with Parvo. I find this blog difficult to keep up with and reply to. I would love to share more. I have a parvo group on fb https://www.facebook.com/groups/938126616247691/ and you can request to be added but I would love to speak one on one with you as it has been my life passion for the last 15 years to help others take control of their health through nutrition. my number is 505-419-1697 and anyone on here is welcome to text me anytime and we can set up a time to talk. Just know there is hope and remember that your body is designed to heal, we just need to help it get into that mode 🙂
S. said,
April 26, 2017 at 7:33 pm
I wish could be encouraging here, but I’m in year 26 post Parvovirus B19 diagnois (no rash, just woke up with pain one morning). I think there is very little I haven’t medically wise and feel like I’ve been run in circles with additional Dx over the years. Sometimes I think it isn’t the medical professionals fault there is no help for those of us with this problem. It seem to be more of dealing with small individual problems then solving the issue of why this continues to give up problems. The only positive thing I can relate is that at least now there is some recognizing the problem and some research in how to help people like us. 26 years Ago when I caught this I had to argue to get tested for the Parvovirus B19 because I was told since I didn’t have a rash, that was not what was wrong with me. One lab test ordered by a different Dr proved I had indeed caught fifth’s disease.
While me relating the length of time i have fought the symptoms isn’t going to make anyone here feel better I hope realizing that within these yeas there have been medical advancements we can hope for better solutions in the future.
Sherry said,
August 18, 2017 at 2:38 pm
Wow! I am so sorry to hear you have had parvo for all these years. I’m also excited to know I am not alone. I have been suffering for for the last 16 yrs. Now. I have all but given up hope. Have no fight left. I’m on high dose pain meds. Dr. Says some day I could go into remission. Been hearing that for years. If it weren’t for my son’s I would give up. I sure could use a few words of encouragement. Thank you.
serenamuse said,
August 19, 2017 at 5:38 pm
I understand the no fight left. I think we have all been there. The turning point for me was accepting that the doctors at least for now, did not have anything to offer but drugs to try and attack the symptoms, though none worked well or for long and had too many side effects. I went to a naturopath. She helped me with diet and supplements. I went off all the drugs. For me, what worked was accepting, that any improvement was going to come from what I was doing, not the doctors. Am I cured? No, but I got my life back. I have down days, but overall I am very productive now. If your body is going to fight this thing you need to give it everything it needs to fight and you need to figure out what for you that means. For me it has been a nutrient dense vegan diet, no soda, no sugar or artificial sweeteners, stevia is okay in small doses. Rest, but also exercise, walking, nature. At times, acupuncture for pain that won’t let up. Massage, yoga, meditation. They have all helped at times. Seeing a pain specialist therapist was very helpful. Ultimately though you have to manage your own health. That is hard when you feel like you can’t lift a finger, but if like me, I came to a point where I had no life, was missing out on my kids growing up, I was ready to try anything. Let’s face it, eating super healthy and clean can’t hurt you. The drugs can.
serenamuse said,
February 13, 2009 at 11:51 pm
Tam,
There is nothing more frustrating than knowing that the tests will come back negative. They have for me, for everything, even urinary tract infections! I know what they feel like, I have the symptoms, but the tests come back negative. I went through three months of a constant pain in my head, they did all sorts of x rays, gave me migraine meds, shot a nerve block into my head – nothing worked, just made it worse. I just don’t think what we have shows up on the tests, that does not mean it isn’t real, it just means they don’t have the right tests yet. I feel so sorry for your daughter.
Linda Jansen said,
February 17, 2009 at 4:33 pm
I was diagnosed with slap cheek paro three and a half years ago after having numerous blood tests for litterally everything under the sun. After six months, and retiring from my nursing career, I started to feel better. However in February 2008 I was diagnosed with arterial blood clots in my left hand and both feet. This year in January I have had another episode of blood clots and am now on Coumadin and aspirin probably for the rest of my life. Has anyone out there found a correlation between parvo and blood clots?
AM said,
September 2, 2011 at 9:58 pm
I just recently got Parvo, then a few weeks later multiple pulmonary emboli. My joints ache and I have severe fatigue.
Chris reichenbaum said,
February 13, 2012 at 2:07 am
Hi Linda,
What kind of clot”s did you have?? Did they just appear in a very dark purplish blotch on your hands and fingers??
Please elaborate for me!!
Thx,
Chris R
serenamuse said,
February 19, 2009 at 6:30 pm
I have not heard of that but an infectious disease specialist told me that the Parvo affects every system in you body. If one thing is off in our body it will affect other parts as well. I believe you can’t treat your symptoms as separate conditions – everything connects or influences the other part.
Cindy said,
November 2, 2010 at 1:05 pm
Seranamuse-
Might you be willing to pass along the name of the infectious disease specialist that you referred to?
Thank you so much….
serenamuse said,
November 2, 2010 at 2:46 pm
It has been several years. I’ll have to look it up. I am pretty sure though that there is someone on the East Coast who has really researched this further. I’ll get back to you!
serenamuse said,
November 4, 2010 at 4:48 pm
Here is a link to the doctor in Thousand Oaks http://www.healthgrades.com/directory_search/physician/profiles/dr-md-reports/dr-ramesh-nathan-md-9337ed2a
Can anyone recommend someone back East for Cindy?
Annie Johnston said,
October 23, 2014 at 6:03 am
Dear Serena
I’ve just come onto this site and have found your comments very helpful including diet and life style, I live in London (UK) and in June diagnosed with polymyalgia put on steroids then sought second opinion from another Rheumatologist who took blood tests which came back positive for Parvovirus – there is an interesting health centre in London called Dulwich Health run by Rolf Gordon – check it out as he considers geopathic stress lines and much parasites which I’m convinced this is what parvo is – ie an autoimmune disease – I’m on the Oxytech and Allitech – all very interesting – Rolf is now 85 but has been treating cancer and auto imbue diseases fir years – I’m not sure if you will get this as I’ve never been on a blog site in my life – if you do I’d love to now how you are coping
Best
Annie Johnston
serenamuse said,
October 23, 2014 at 3:54 pm
Annie,
I’m glad you have found a doctor who is proactive and has history with treating these types of conditions. Please let us know if something works. I am at a frustrated point of feeling like as soon as I get a handle on my symptoms, and move toward more energy, I am hit with something new. Currently I’m dealing with a headache at the back and one side of my head that has been there for two weeks. I’ve had this one before. It lasted three months. Nothing the doctors did helped. Finally it went away on it’s own. It is though disturbing my sleep, and affecting my work and energy and over all making me very difficult to live with. I suspect it is just one more aspect of chronic pain.
serenamuse said,
November 21, 2014 at 4:07 am
I have finally kicked a three week head ache. I’m not sure if it was the acupuncture, the herbs, or blowing the hair drier on the spot. Our weather has changed so I’m fighting some fatigue – it happens every year, but then we are nearing the end of a busy semester, so that is normal as well. I’m doing much better than I have done. No complaints today! That is rare 🙂
Annie Johnston said,
November 21, 2014 at 3:00 am
Dear Serena
Having been on the Alitech and Oxytech for a month – I had another blood test as I was convinced that I no longer had Parvovirus – the test has come back negative!!! I have reduced the steroids every two weeks by 2.5mg with no side effects I’m now on 8.5 having been on 15- I am pain free – it has to be down to the “Alitech” (which is Allicin) – that has eliminated the Parvo. I will always have the parvovirus in me like all of us and we are all prone to flare ups but as long as we stay dairy free and avoid wheat it ought not to come back. I would urge any reader to look on the Dulwich Health Web site based in Gypsey Lane Dulwich London UK – they post out all their products – I was recommended to take the liquid Alitech (£38)two bottles as it gets into yr system immediately – ( just finished my first ) one teaspoon in morning and one at night I take a teaspoon if manuka honey after as it tastes revolting. Followed by parsley to take away the smell ( stalks are the best) Once I have finished the liquid which will be by Christmas) then I will take the tablet form of Alitec for a month – I also take from Dulwich Seagreens ( tablet form) I also bought a radi tech from Dulwich as I couldn’t move by bed (it’s to eliminate the geopathic stress lines – again all from Dulwich Health and have been using a magnatec (again from Dulwich) which I believe has worked. If you do order anything from Dulwich Health by his book (£9) “are you living in a safe place” great read – if people don’t want to purchase anything ring them up and ask them to send you their leaflets on Allitech and other products – it isn’t a shop but a small mailing distribution run by Rolf Gordon who is now 85 and has devoted his life to finding a cure for cancer after losing his family to the disease.
I ought to add that once I was re diagnosed with Parvovirus I was sent from a friend of mine Derek Talbot ( he is a dowser – google him) in Ibiza Spain – he sent me 6 tiny tablets which was the parvovirus to put under my tongue for 6 days – this was so that the body could recognise parvo and could start to fight it – a bit like having a BCG vaccine etc – that clearly helped to speed up the recovery period.
I’m not great on how to receive notifications on thus blog so if any reader wants some help please email me direct on annijohnston@gmail.com
All I can say having been in immense pain ftom Easter and tried everything known to man – this Allitec and Oxytech together with te sea greens has cured me – my friends are gob smacked
I hope this brings comfort and hope to you all as I lived that pain
Annie
serenamuse said,
November 21, 2014 at 4:00 am
I am excited that you are doing so well. Please let us know about your continued progress.
Melody Hampton said,
February 25, 2009 at 6:10 pm
I feel for all who suffer like myself from this Parvo demon.
The sad thing is it is hard to get help as doctors do not know much about this and dont seem to care to either very much. Most want to say all test are clear it must be all in our heads like we are nut cases. I ask one doctor one time how can I use my mind to make my joints swell and get hot and get a rash all over me just how can I use my mind to do that? His answers was you would be suprised to find what the mind can do…I thought to my self yes..I may be and at that moment I thought his mind had done gone and lost him…Right away they want to blame stress and such on this instead of digging to the root of the problem and getting answers. I know there are a few good doctors who try but the most I have dealt with and believe me there are many have either just about killed me with their drugs or tried to get me to see a pyscho dr because it was all in my head! The only test I ever tested postive to was the parvo and anemia..I got IVIG treatments 400mg per killogram 3 different times and I am on B12 shots montly. I am doing much better and pray the IVIG does not wear off as now I am without health insurance due to my husbands company he worked for went bankrupt and left us with no health or life insurance. So there you have it believe people who have parvo when they say it hurts and it not in my head and when the doctors treat you like your a nutcase find a new doctor who will listen and learn and try to help.
Blessings to all of us Parvo B’s
Melody
Tam Wedgwood said,
October 9, 2009 at 7:30 pm
We had rather a frustrating time at the rheumatologist yesterday. OK, the Dr admits she knows little about chrionic fatigue – but then she persists in talking about my daughters symptoms as if she does! The Dr is a nice person & she’s helped us in other areas, BUT she told us this is “completely stress induced”; when we mentioned my daughter over-doing things & then crashing, & having to learn to live with this disease and pace herself, she asked what we meant by that & seemed to suggest my daughter only gets sick because we have gotten into the habit of thinking of her as sick. At one point she actually said “this is not a disease; she’s not sick” Boy do we disagree!!
She also harped again on how my daughter needs counselling because her physical symptoms & her pain are caused by depression, anxiety & the mindset of believing she’s sick. I think she had moved more towards this mental health solution because all the latest barrage of tests came back (as usual) negative – including negative for parvo virus. However, it’s almost 10 years since my daughter had parvo so i’m thinking wouldn’t you expect a negative result after all this time? I thought I’d read the only way you can find the parvo after a long time is from parvo DNA found through an (expensive?) biopsy of the bone marrow. i’m sure i’ve read about that on this site also.
Interesting to hear on the radio news this morning the finding that Chronic fatigue absolutley is a disease, sufferers are sick, & it is caused by viruses, not stress. Also that it’s hard to detect on standard tests so of course tests come back negative, but the immune system is under attack & the people are sick, & it is absolutely not all in the mind.
It seemed very ironic that that report came out the day after we saw the rheumatologist rather than the day before when it might have given strength to my argument! Still, I hoped the Dr was listening!
And I hope all Drs were listening & maybe from now on sufferers from Parvo & other similarly nasty viruses will be treated as if they are sick, not depressed. Also, let’s hope that this news means there may soon be retro-viral treatments.
Tracy Terralavoro said,
March 8, 2009 at 4:15 pm
I was diagnosed with Parvo virus in January 2009. I spent 3 days in the hospital & numerous trips to the ER… symptoms were numb & swollen fingers & hands, knees & ankles. We are in March 2009 & my fingers are still numb- I’m seeing a neurologist for that. I’ve also had laryngitis for 3 months- not sure if there is any connection- seeing an ENT doc for that. My RA specialist diagnosed Parvo because of hospital blood tests, apparently I tested off the charts on both tests. So I continue to see her as well. My problem now is I;m off prednisone, and there are about 3-4 days during any week that I just sleep & have no energy whatsoever. This is very unlike me & I;m wondering if anyone has had any experience with depression & parvo. I already am depressed, I take 150 MG of Effexor…. should I speak to doc a about increasing my dose?
Tam Wedgwood said,
April 24, 2009 at 12:39 pm
About Parvo & depression – I think there are 2 aspects to this:
First of all, like Serena said, there is all the frustration of all those things you just can’t do. My daughter is a perfect example of this – she is (was) a highly motivated high achiever, all A student, took the class prize in every subject last year, worked all Summer & every weekend as a volunteer with Alzheimers patients, active in local theater, & a youth group, lots of hobbies etc etc. She has had to give up all her activities.
Then she had so many plans for going to college, travelling, working as an archaeologist, becoming a writer…It hit her really hard to think that in effect this life was ‘over’ & she had to re-think her whole game plan. She is usually a buoyant person, but definitely went through a few weeks of depression. I knew she was coming out of it when she managed to joke about it: lying there unable even to get out of bed & in pain, saying: “Well I guess I won’t be walking the Appalachian trail!”
The second thing is it sounds like Tracey like my daughter has CFS. I believe that depression is one of the symptoms of CFS, so it may be that it is more than the frustration alone. My personal take is that when anyone is over-tired small things feel like enormous challenges, small defeats make us tearful etc only when we are tired….If we multiply that type of tiredness many times into the extreme fatigue of CFS, it’s not surprising that sufferers feel depressed- it is a natural side-effect of exhaustion. So while it might be worth talkignt o the Dr about the depression, I wouldrecommend talking to him about CFS – if you could tackle/treat the CFS & bring the fatigue to a more manageable level, then the depression may improve – without drugs.
My daughter is finding ways to manage her CFS – she is taking really high doses of B vitamins, plus a multivitamin, & avoiding starch, sugar, & sweeeteners. Since any exertion drains her & concentration is difficult, she does 30 mins school work, then takes a 30 minute break. She was going to bed really early, but found her sleep was really unrefreshing, plus insomnia was a problem. Now she is staying up later, but finds she is less tired because the sleep she does get now is more refreshing. She was on prednisone, but now just takes daily Ibuprofen for the pain.
When she was trying to go to school she would come home, fall straight asleep (at 3.30pm), & spend the next 2-3 days sleeping before she could go to school again. She had no social life, couldn’t do homework, couldn’t do things with the family. Now she is on her 30 minutes only work schedule, & taking her B vitamins, only attempts to go to school 1-2 days a week & works from home, she is keeping in her classes, has a more ‘normal’ bedtime, & watches a movie with us sometimes in the evenings. It’s still not a great social/family life, but at least she is not in bed 24/7. She is also no longer depressed.
I recommend experimenting & finding out what helps manage your CFS symptoms & hope that when you figure out what works for you, the depression will lessen as the fatigue lessens.
Ken Rynning said,
October 12, 2009 at 5:52 pm
I strongly suggest that you try a daily regiment of minocycline. I did not realize how much I was suffering from fatigue until it started to go away. My life is now worth living! I still have pain (not as bad as before) but now that I have energy and stamina I can get through it. I thought I was tired all the time because I was fighting pain. That was not the case. With me, they were two separate issues. My “brain fog” has also been lifted. I owe my life to the wonders of this antibiotic. I started with a strong “loading dose” and then maintained 200mg/day. I had read good things about Vibramycin but it did not work AT ALL for me. GO MINOCYCLINE!!!!!!! It saved my life.
Ken Rynning said,
March 17, 2009 at 8:17 am
It is nice to finally find a place where people understand the physical suffering and emotional pain that is dealt to anyone with this infection. On the other hand, after reading through some of the comments I don’t see much light at the end of this tunnel and I am beginning to feel a bit hopeless. I have only been suffering since August 2008 and the thought of this lasting years is enough to make me want to “cash in my chips”. Sometimes the pain is so severe it has me looking forward to death. I too have only gained relief by taking prednisone 10 – 15 mg/ day. However I understand that the long term effects of taking this are not good. Enbrel, so far has proven to be worthless. I can manage to appear somewhat normal if I take Percocet. I look at my children and I am so happy it is me with this condition instead of them. Please, somebody find a cure.
pam jean said,
August 24, 2014 at 12:34 am
martha 12-30-12 rn said valtrex 500mg one twice a day for 5 days then once a day helped parvovirus.. valtrex is antiviral, i have not done it yet but traditional medicinal chamomile lavender tea helped nausea after eating. and ALVITA MILK THISTLE TEA HELPED MAKE ME FEEL BETTER WITH A LITTLE MORE ENERGY , DONT MIX TEAS TOGETHER OR THEY DONT WORK for me. BESIDES PARVO I HAVE INFECTIOUS ARTHRITIS FROM A CUT ON FINGER EVERY BONE ENLARGED LASTLY MY SKULL AND A FLEASHY BUMPS ON LOWER BACK OF HEAD CAUSES PAIN WHEN I SLEEP BECAUSE OF PRESSURE. I MAY HAVE ACROMEGALY ALSO , IF ANYONE CAN HELP. pampaint@gmail.com
colin robbins said,
May 7, 2009 at 1:03 pm
How are you, the CF side of things sounds like it knocks you around a bit. I am a 40 year old male living in Hobart, Tasmania Australia. I contacted chronic PVB19 infection about 10 years ago and have had the bloody thing ever since (slap cheek virus/fifths disease).
My condition sounds like it may be a little different to yours, I have an underlining immune system defect that I was born with, unfortunately my system doesn’t mount an imune response to the PVB19 virus (T-cell function defect). I have had numerous bone marrow biopsies over the years to detect the PVB19 virus and all have come back positive, the only thing that seems to work is Immunoglobulin intravenously transfused every month (Intragam or Octogram). From what the Prof told me it suppresses the virus to allow my bone marrow to function properly again, creating new red blood cells (reticulocytes). My haemoglobin levels increase and my health improves, but after about 3 weeks my health goes down hill again (PVB19 virus attacks bone marrow ceasing new red cell production). I mainly feel fatigued (due to low haemoglobin level). I do suffer from headaches, light headiness and pains in the joints, mainly toes, fingers, knees and lower back/hips. Over the last few years my concentration and memory have been affected and sometimes I feel “zoned-out” when talking to people. With the large amounts of immunoglobulin received over time I suffer regular bouts of serum sickness (basically my imune system not liking too many of the good antibodies).
On the recommendations of the Prof I retired from work in 2001 and have found this a great help in management of the condition. My white cell counts are now affected and during certain times between treatments I am neutropenic (suseptable to infections), whether this is the PVB19 virus causing this not sure.
I am not sure if this information helps you with your battle of your condition, I have found that it is improtant to just live each day as it comes, quality of life is the most important thing. The condition is managed at the moment and this allows me to lead a near to normal lifestyle. Family and friends are most important and also keeping active (physically and mentally) assists with the big D word.
If you want to know anything else, send us a line.
Cheers
Colin Robbins
Rebecca said,
October 21, 2011 at 8:38 am
Hi Colin, I too live in Hobart and diagnosed with parvovirus about 5 weeks ago. I was just wondering if you found a good doctor in Hobart that knows a bit a bit about the disease as Im finding my dr thinks I should be over it and what Im suffering now is all in my head. Would be most appreciative of your response, hope you are feeling well, Rebecca.
serenamuse said,
November 3, 2011 at 1:52 am
Nothing worse than a dr. thinking all is in your head. We know our bodies better than they do…
Georgia M Boyce said,
May 8, 2009 at 5:51 pm
Hi,
I was just referred to this site by a friend with parvo. I discovered I had been infected with parvo at some time in my life when I was suffering from RA symptoms and my rheumatoid level was high. Sent to a rheumatologist, he declared my symptoms as non R/A, but instead suspcted Hep C. Tests showed I was positive. Non intervenous drug user with hep c? and my dog had parvo but I had it also and they have nothing to do with one another?
So, it is now 6 years later, I’ve focused completely on the hep c life and it’s side effects, and totally ignored the parvo………..until my friend sent me this adress. I’m here to learn more about parvo before I go to the Univ of Mich for my regular bi yearly check up with my hepatologist, at which time I’ll be biopsied again. I am a 61 year old female with no idea how I was lucky enough to get both of these diseases, however, knowledge is power so I’d like any input or references. Thanks and happy to join all.
georgia
serenamuse said,
May 8, 2009 at 7:10 pm
Georgia, I think you will find many of us have had similar experiences and will respond to you. If you look at the resource page (upper right hand corner of blog) you will find some articles. I have had the most success with diet – all drugs causing side effects that were just not worth it. You will find a book listed on the resource page that has been very useful (By Dr. Joel Furhman). At first glance it looks like a diet book, but it is really about detoxing your body from the average american diet, and making sure every bite has the most nutritional value possible. Our bodies are in constant overload – trying to fight the Parvo. We need to fuel the fight. Hope you find something that will help. I have never found a doctor who had the answer. Sorry.
Holly said,
September 16, 2009 at 8:47 pm
Hi Georgia,
This is my first time to the site. I have been experiencing numerous joint issues, numbness etc. recently and also about 8 months ago. Last time there were no findings other than an elevated Rheumatoid Factor. This time, they called me to tell me that I tested positive for Parvo but do not currently have it. (not sure exactly what that means yet since my Rheumatologist visit isn’t until next week). Also, the only other issue with my blood work is an elevated Rheumatoid Factor. Hopefully I will have some answers next week, but reading the posts makes me further understand that all my symptoms are very real and I may finally have an answer to all this. Totally agree w/ your comment about knowlege being power. Peace!
Molly said,
May 18, 2009 at 2:25 am
Hi,
I was just diagnosed with human parvovirus B19. I called my doctor when my hips hurt so bad I couldn’t sleep for 3 nights. During this time I was on steroids for migraines. They told me the steroids should also help with the hip pain. It seemed to get a little better for awhile… then a week or so later as I was just ending the steroids I started getting joint pain everywhere and also sore muscles, my arms and legs hurt to touch them. I went in to see the doctor and I have to give her credit she did say it sounds like parvo symptoms. She tested me for R/A and Parvo, and a couple of other things. The R/A came back neg, and parvo tested positive for a “recent/current”. When I spoke to my Mom about it she insists that I had fifths disease as a child, the whole slapped cheek symptoms, she took me to the doctor who diagnosed me with fifths disease. Has anyone ever heard of someone having this twice? I thought once you had it you were immune to it. I’m just in the beginning stages of this and I’m hoping and praying that it will go away in the couple of weeks that the doctor said it would. After reading some of your stories I am horrified to hear that some of you have been dealing with this for years. Does that mean that your blood work continues to show that you have a current infection? Any comments or advice that anyone can give me about this would be great. I am a 33 y/o female with a 6 y/o daughter that never showed symptoms of fifth disease, but I have a feeling that she brought it home to me.
Thank You for your advice,
Molly
serenamuse said,
May 18, 2009 at 4:28 am
Hi Molly,
One thing that is consistent with Parvo is that the medical profession still knows very little about it. I would imagine that they do not know if your earlier exposure to it could result in a much later flare up. I know many of us have had an initial case then gone a year or so without symptoms then had the symptoms come back after dealing with very stressful situations – death, big life changes etc. I for one never test positive for current infection, just for past infection. However, I have been told it stores in bone marrow, which I have never had tested. Most specialists do not want to prescribe costly tests when they know they do not have any solutions to offer even if the tests come back positive. I was your age when I first contracted the virus and am still fighting it. I have found great help through diet, but if I over do it, have too much stress, I feel the virus working on me. I do suggest you read some of the other comments. We have many members who have different experiences, have tried different medications, tests etc. On the resource page you will find links to articles and some books. Please keep us informed. We are here to support and try to help one another.
Best,
Serena
Holly said,
September 16, 2009 at 9:56 pm
Hi Serena,
I too am also only testing positive for a past infection. I have felt good for 8months and all of a sudden these symptoms all came back. It is only now that they tested my blood for Parvo and see that I had a past infection. This is all so new to me but I feel like it explains SOO MUCH!! Thank goodness for the internet and sites like this. So, even though you only have had past infections, the Parvo is to blame for how you feel from time-to-time? I have been pretty stressed out lately. I am 33 and have two daughters (2 and almost 4). Although they are the light of my world , they certainly do keep me hopping. When you “relapse” how long does it typically last and any recommendations? Your post really struck a cord b/c of how you felt good for a year and then stress triggered it to come back. I am going to take a look at the resources page. Thanks again!!
serenamuse said,
September 18, 2009 at 4:08 am
Hi Holly,
It is believed that in some people for whatever reason their bodies do not fight off the parvo and it stores up in your bone marrow – ready to resurface when you are under stress or have other triggers. As far as how long the flare ups last – that varies greatly. Originally it might be a couple of months but in the past few years it was hard to tell when one would end and another would start as the symptoms never really went away. Even now I still have symptoms every day, just not so bad that I can’t live with them. I’m still holding out hope. I know there must be an answer out there. Wheather our US health care system will ever let us have access to what we need is another question – see posts by some of our fellow Parvo people in Canada and Australia. There are some treatments that are very costly so are not readily available here. The best advice I have is eat for health – make every bit count – nutrition, nutrition, raw vegetables, fruit and whole grains, and beans. Keep in touch!
Holly said,
September 18, 2009 at 4:38 am
Thanks you so much for all the useful information! I am also a firm believer in whole foods! Now, more important than ever from what I am learning. Take care and if I learn any good information along the way I will be sure to share. : )
amanda said,
August 22, 2009 at 4:10 am
does anyone out the suffer from tight and heavy feeling arms and wrist from the parvo virus???
Tracy Terralavoro said,
August 22, 2009 at 3:55 pm
Hi Amanda,
Yes, Arms, legs everything feels “off”. I’m 44 years old, was diagnosed with Parvo back in January 2009, and some days I feel like I’m 100 years old. It’s hard to move around, hard to do anything. I’m seeing many different doctors for all these symptoms, but so far, nothing helps but pain medication. I wish you luck in finding something that helps you!
Stephanie said,
June 14, 2010 at 1:52 am
I am 29 years old and have been suffering from parvo virus for 1 year. It started with the usual joint pain that spread from my hands to my knees, elbows, etc. I thought I’d been going crazy until I discovered this site. I got the usual “your anxiety is causing your symptoms” from my doctor. I knew better of course.
I’ve been seeing a rheumatologist who did all of the necessary testing to rule out anything autoimmune going on, all of which came back negative. I had been tested for parvo shortly after my son had it last year and the results were positive. I’ve been retested since then and I no longer have parvo virus infection.
All of the pain has primarily been in my joints however recently I have had a whole host of problems. Note that these problems didn’t arise until after I started taking Zoloft for anxiety. (I have been off Zoloft for 3 weeks and the symptoms are still present). Tremors, twitching and muscle weakness in my hands along with muscle weakness in my arms. Things feel a bit heavier these days, and I now have periods of fatigue. I believe the Zoloft was a trigger for these symptoms but ultimately they stem from parvo.
I am calling my rheumatologist tomorrow to inform him that I am not alone, and that there are others who are suffering from this as well. He has acknowledged that the symptoms I am having stem from parvo and has told me that I am now “hypersensitive”. It is so unfortunate that this is not being taken seriously enough and my heart goes out to every one whose days are affected by this. Does anyone else have extreme pain in their hands when it gets cold outside? My hands hurt so much that it makes my whole body ache and it feels like I have the flu.
serenamuse said,
June 15, 2010 at 4:15 am
Stephanie, I hate hearing that yet another person is experiencing this. Yes, your story sounds very familiar. Yes, the Zoloft could be causing more side effects – most drugs do – and understand that really doctors only prescribe drugs. Even if they did take it seriously, they would not have anything else to offer. I got off of the drugs because there were so many side effects and I really was not feeling any better on them – just different. Also, they made me gain weight that would not come off till I got off the drugs. I have found the most help by eating a nutrient rich diet – in my case vegan – lots of fruit and veg. It can’t hurt and can really help your body to fight back. Ask your doctor to see a dietitian. Do keep in touch and also, check out the resource section – there are some interesting articles and books that might help you and those around you, better understand what you are going through. All the best!
Serena
Heather said,
November 14, 2013 at 3:30 pm
Good to know that another person is having tremors with Parvo. I’ve had all of the symptoms as everyone has mentioned here, but have also progressively developed TREMORS. With a past Parvo B19 (IGg positive). Now it looks like I have Parkinson’s when you see me, but test show I don’t. Also MS test results were negative. My Neurologist just suggested I see a counselor for stress management when I saw him 3 days ago and had a new voice stammering problem. What he didn’t tell me that the Sinemet he prescribed me (which helped with the tremors) a couple of weeks prior could have caused this new speech impediment. I went off the Sinemet and the speech is improving greatly. My symptoms of Parvo started 5 months ago with fatigue, joint pain in feet and hands & hands progressed to joint pain all over and inability to stand right up, it’s like I get stuck and have to force myself to a stand while tremoring all the while. Also my head tremors when I walk. I am off work right now and am feeling a little better with taking it easy. I’ve tried prednisone so I could continue to work and it seemed to help at first but have since went off it. I’m so frustrated and would like to know what is wrong. This is not normal. And the medical community has no clue it seems. They all seemed baffled.
Leslie said,
November 15, 2013 at 5:50 am
Hi, Heather (And Everyone else, too!) You must be so concerned… rightly so. About five months after my initial dx with parvo I first experienced something like an internal tremor or deep vibration sensation that sort of flows through my whole body… like a hum or rumble. You can’t see it; it’s inside me. It continues two years later, every day. It’s been so hard to describe it to my doctors as I have never felt anything like it and fear they will think I’m crazy, so I’m guarded. It has been difficult to experience something so bizarre and scary and then feel you have to protect yourself against the judgment of the very people you’re turning to for help. I know I’m a stable, intelligent, spiritual, strong woman… who got terribly, terribly sick from this virus. I just wish there was more knowledge about it and I didn’t feel I had to start my conversations with doctors trying to convince them of this. Blessings and best wishes.
Tracy Terralavoro said,
August 22, 2009 at 4:12 pm
I last wrote in March 2009, just an update on what’s been going on…. I was diagnosed with Parvo in January 2009. Many bouts of swelling & pain in arms, legs , hips, back…extreme fatigue, can’t even get out of bed some days. The flare ups are becoming further apart thank God, as I have 6 & 7 year old boys. Had throat surgery for my laryngitis in April, which I had for 3 months. It was a “singers nodule”- I don’t sing! I’m sure that was caused by the parvo in some way. Results of biopsy showed major inflammation in esophagus…referred to gastrointologist. Had endoscopy, am now on Nexium for that. Had ct scan in June for extreme pain in my hip/pelvic area…we are still working on that. I’m seeing a neurologist in September to see if he can find anything. Also saw neurologist in June who referred me to orthopedic doc for numbness in my fingers & hands. I will be having surgery in September for that… was supposed to have it in July, but got walking pneumonia 2 times & they had to delay surgery. I didn’t even know I had pneumonia- I started coughing up blood & my doc sent me to ER. Tried Pain Management company in July, but they dropped me because my insurance company wouldn’t pay for physical therapy unless I’d had surgery. Monday I go for another CT scan to see if the walking pneumonia is finally gone.
Let anyone try to say all this isn’t a result of the parvo virus! I’ve never had so many health problems in my life. On top of it all, being on so many different meds this past 8 months, I’ve gained 50 pounds, which certainly compounds all the pains & aches I’m having. I’m so glad this blog is here…so I know I’m not crazy & there are others suffering with the same symptoms as I!!
Kathy said,
September 28, 2009 at 2:07 pm
Hi Serena and others. I’m still reeling a little bit from the news. A lot of it doesn’t make sense because I have had mild arthritis in my knees for a few years, and the acute onset in my hand for 18 months. At first it looked like carpal tunnel syndrome, in my thumb and forearm. After wearing a brace at night, the pain improved but I got swelling in my hand which gradually settled into my ring finger. In the meantime over the past year I’ve gotten stiffer and stiffer, especially my hips. Exercise helps, but as soon as I stop moving, the stiffness goes to work and there I go with the penguin walk. The blood tests were positive for B19, negative for lupus, Lyme and rheumatoid. I’m 50 years old.
Kathy said,
September 29, 2009 at 4:33 pm
A new development today. My lower back seized while I was scooping the cat box. I couldn’t move for a couple of minutes but eventually got myself over to the treadmill and got it loosened up again in about 15 minutes. I think I’d be immobile right now without the treadmill and my memory foam mattress. Thank God I am self-employed because I don’t believe I could get myself to work every morning at this point.
Dean said,
November 10, 2009 at 9:04 am
Does anyone come to this site anymore?
Tam Wedgwood said,
November 10, 2009 at 1:04 pm
Sorry Dean – I haven’t been on in a while as nothing new to report & lots of stresses in other areas of my life, so been too busy to come here.
Sorry you were ‘left hanging’. Hopefully some of the others are out there too & will get back together here. I know this is a horrible illness & having somewhere to come where other people understand is very important.
I replied to your other post. Hope it’s some help.
T
Tracy Terralavoro said,
November 12, 2009 at 2:11 am
Someone questioned whether or not anyone uses this site anymore & I most certainly do, and am always anxious to read new information. My story left off with a bout of pneumonia in July 09 that wouldn’t go away, and now I’m suffering from a severe flu… again, I believe all stemming from the parvo which has totally knocked out my immune system. Still hoping for answers….
Nathalie said,
December 14, 2009 at 10:24 pm
I am new to all of this and I want to thank you for having a place that others can come and get together to discuss this disease and the options they have.
I have a long story and I will go into details about it at another time, I do not have much energy today.
I have been dx with Common Variable Immunodeficiency and they just recently learned of my Parvo B19 infection, which answers so many questions! Especially the unexplained arthritis in my hands, wrists, hips, knees, ankles, feet and back! The pain in my bones, recurrent infections in my bones, not to mention the sinus and lung misery.
I thank each and everyone of you for sharing your stories and insight into this dreadful disease. I am lost and hope to find the answers to put this into remission or completely rid myself of it one day. Soon hopefully!
I will post again at another time. I just wanted to introduce myself today.’
Thanks,
Nathalie
serenamuse said,
December 15, 2009 at 2:41 am
Welcome Nathalie. I’m glad you found our site, though sorry for the reasons that brought you here. I suggest you look at the resource page. It is a good place to start – as far as learning more about Parvo and also some useful ways to control it. Many of our bloggers have very good things to share – things that have helped them. If you read through some of the earlier comments there is a host of information. I look forward to hearing more from you.
Best,
Serena
Nathalie said,
December 20, 2009 at 7:00 pm
I am suppose to start IVIG for my Common Variable Immune Deficiency, I heard this is also the treatment for Parvo B19. Has anyone had any experience with this treatment? Does it work? And if you have contracted Parvo, does anyone else have any other viruses that has caused complications? I am wondering about this horid arthritis I suffer. It seems to be destroying my joints like RA would… How do you stop this?
Lisa Y said,
April 30, 2010 at 5:56 pm
did you start the treatment? any progress?
serenamuse said,
June 15, 2010 at 4:20 am
Nathalie, I have heard from one of our bloggers in Canada that the IVIG really helped him – I’ve not found an insurance company to cover it in the US. Please let us know if it helps.
Jennifer said,
July 19, 2010 at 2:38 pm
Nathalie- I was diagnosed with Parvo B19 in April of 2009. I have seen a Rheumatologist who put me on Prednisone and recently (3 weeks ago) I saw an Infectious Disease Doctor who put me on IVIG. I had 5 consecutive days of treatment and here I am 3 weeks later still having pain in my wrists and knees. The IVIG treatments are very expensive. Luckily my insurance paid for them but they don’t seem to help. Did they work for you?
serenamuse said,
July 19, 2010 at 6:17 pm
Nathalie, just curious, what part of the country or world do you live in? I am also wondering what insurance company covers IVIG? I’m sorry the treatments don’t seem to be helping. I had heard positive reports from people in Canada, but I know the treatments can vary greatly as to size of the dose given. Doctors all have different ideas on this and don’t all agree on how to go about it. Perhaps if you look through older posts you can try contacting one of the members who had treatments that worked and get more information?
Cathy said,
January 5, 2011 at 4:46 am
Jennifer….. they gave you IVIG….WOW… did they do the procedure based on the Parvo diagnosis alone?? I would love to hear more…. are you feeling better.. I noticed that you had the treatment in the summer?? Was the IVIG painful?? Any side effects?
I was also diagnosed in Apri of 2009….. and have been asking my Dr. for this…. he wants me to go the Mayo (infectious disease Dr.).. what did your Inf. Disease Dr. want to know, before doing the IVIG??
Thanks for any info..Cathy
Lisa Y said,
March 23, 2010 at 10:59 pm
Hi everyone
I just stumbled on this site today. I was diagnosed with Parvo in may 2008 a few weeks after my 6 year old came home with it. I was very very sick and off work for almost three months. I was extremely tired and also had swelling in my arms, wrists, and feet. I have never been the same since. My GP thinks I have psoriatic arthritis and referred me to a an arthritis specialist but he doesn’t seem to “get” how I’m feeling. I have good days and bad days but I do feel like I am in a constant fog,I am always tired and in pain. My hubby basically does everything around the house. I need to understand what treatments have worked for people and I will be seeking out that nutrition book. No one seems to understand, reading these posts was so refreshing. THANK you for creating this blog!
elaine henderson said,
April 18, 2010 at 5:15 pm
I am happy to find this site. I am so weak right now and totally confused. I have been fighting this for about 3 or 4 months. It started out with pain in some joints and back then I hurt all over, couldnt hardly walk, could hardly move. I just stayed in bed and slept a lot. I itched around my neck and back a lot. I was too sick to drive and sit in doctors office. I was walking better when I made an apt with my GP dr. It took a few days to get in to see her. She said it sounded like a virus and antibiotics wont help. She took blood samples. and 2 weeks later called to tell me I had either had Parvo or Estein barr between a month to 10 years ago. She said if I still feel bad to come in and see her. I still have the symptoms. I can’t walk around much without huffing and puffing. I am so tired. I sleep a lot. I am 70 years old. But from what I read there isn’t much I can do. Eating is a problem, too. The only thing I can eat is fruit and vegetables. I did forget to say I did feel like my brain had been in a fog when I was so awfully sick. I think I got this from a friend who fought all these symptoms just before I got sick but the doctor didn’t do any blood tests and blamed the symptoms on other things, gave her antibiotics. She fought it for 3-4 months. She is better now. I just hope I get better soon. Thanks for this opportunity to write this.
Sarah Brighton said,
April 23, 2010 at 10:45 pm
Hello there 🙂
I’m Sarah , 36 yrs old & I have fighting Parvo for almost 6 mths now. I have never felt this ill for so long & I can’t tell you how ‘nice’ it is to find this blog, although nice is not the best word to describe it, but you know what I mean 🙂
I have been taking Prednisone for a couple of months, which I am hating at the moment. As my dose comes down, my pain levels go up. However, when my dose is increased, I feel more of the side effects from taking them, so I sometimes feel like I am in a no win situation. I take one Codeine in the evening to get a little relief so I can sleep. This has been a tough thing for me to do, as I have almost always opted for a Holistic way to heal. I started going for Reflexology last week – too soon to tell if it will help.
I’m an Art Instructor & haven’t been able to teach since the beginning of february, which has been hard. Thank goodness for my very supportive Hubby!
Anyway, I don’t want to moan on, but I did want to say that I am naturally a positive person, but I must say that this Parvo ‘incident’ is testing me an awful lot lately! Watching funny movies does seem to help 🙂
Next step is to see a Rheumatologist – has anyone here done that? My Dr seems to think that that is the best thing to do.
Sending healing thoughts to you all!
Sarah
Lisa Y said,
April 30, 2010 at 5:52 pm
Hi Sarah
It’s so nice to hear from folks who are experiencing the same things. I didn’t find my rheumatologist helped all that much but I think it depends on the doctor.
The best I can do is manage the pain , rest when my body tells me to, take lots of supplements to help my joints (fish oils and glucosimine) and watch what I eat…
Good luck and I hope you feel better soon!
Stephanie said,
June 30, 2010 at 12:47 pm
Hi
Has anyone developed peripheral neuropathy after the onset of parvovirus? It’s been a year since I last came down with parvo (I do not have parvovirus infection anymore) and I am now experiencing symptoms of peripheral neuropathy, I have an MRI of my brain this week. I think the neurologist is also checking for partial seizures.
serenamuse said,
June 30, 2010 at 3:34 pm
Can you further explain? I’m not sure what neuropathy is – but may have experienced it.
LIsa y said,
July 6, 2010 at 3:08 am
I’m not really sure what peripheral neuropathy entails. I googled it and it seems so broad. I do have lots of pain, numbness and tightness in my hands and lower legs but I mainly attribute that to the swelling. I have never had an MRI. I am really curious as to your results. Please share!
Stephanie said,
July 14, 2010 at 2:14 am
Hi Lisa
You’re right, peripheral neuropathy is quite broad. There is a great site you should check out
https://health.google.com/health/ref/Peripheral+neuropathy
If you do some more research you will find some sites on peripheral neuropathy and parvovirus. Parvovirus can in some cases lead to peripheral neuropathy.
I haven’t gotten a concrete diagnosis yet, I’m hoping that at my appointment on Monday I will have more answers.
The MRI I had of my brain came back normal, I believe you cannot detect peripheral neuropathy with an MRI, but you can rule out other conditions. I’m not sure if my doctor will diagnose me based on symptoms or if she’ll order more tests.
I too have pain and tingling but no swelling. I also have twitching (my whole leg moved last night and it kind of scared me) and I now have a sharp pain periodically in my left eye. I also have weakness in my arms and I feel tired all the time. I will definitely keep you posted and let you know more.
richard said,
November 19, 2010 at 5:17 pm
Yes,
Those were my worst symptoms. I got parvo in May 09, and after about 9 months of suffering, I started to get better, only to have the problem relapse.
Please let me know how you are doing.
R
serenamuse said,
November 20, 2010 at 12:45 am
I do think it is somewhat typical to relapse after the initial infection. I just don’t think the virus really leaves the body.
Cindy said,
November 20, 2010 at 2:44 am
http://www.ncbi.nlm.nih.gov/pubmed/19441978
Joe said,
January 15, 2012 at 12:41 pm
Hey, Stephanie. I realize this is an old post but new to me:) Yes, I believe neuropathy, or at least neuralgia, is certainly a possible symptom of this disease. Assuming my joint pain is from parvovirus, which is the ONLY thing I have been tested positive for, the parvo has caused neurological issues in the palms of my hands as well as feet, and possibly other areas.
Charlotte said,
July 7, 2010 at 5:54 pm
I was diagnosed with Parvovirus B19 last week, after being ill for the last 7 weeks. I am shocked to read that this may continue for several months, or even years and really feel for everyone who has been suffering with this for so long.
After developing an itchy rash on my chest, legs, neck and scalp, my first symptoms were palpitations, shortness of breath and pain in my throat. Tests for blood clots, hyperthyroidism and cardiac problems all came back negative, thankfully. Over the next several weeks I deteriorated with symptoms of extreme fatigue, appetite loss, body aches and pain (especially the upper body), swollen lymph nodes (especially groin), headaches, dizziness, confusion and concentration/memory problems. My Dr ordered several virology tests, and the Parvo B19 test was positive for current infection. I have been given Naproxen for the pain, but it seems to make me more nauseous and spaced out.
It has been extremely debilitating, albeit for a short period in comparison to some cases on here, and it is extremely frustrating when people automatically assume you have brought this on yourself by getting stressed, or anxious. It is clear that this disease is not well understood and there is still a long way to go. I pray that my body can fight this off soon and I can get back to doing everything I used to love doing.
serenamuse said,
July 11, 2010 at 4:23 pm
Charlotte,
So sorry you are going through this. It does sound like the typical experience. You are right in saying that your body will need to fight it off – give it everything you can to do so – make sure every bite you take is the most high in nutrients as possible. Eliminate processed foods, artificial ingredients. Focus on raw dark leafy greens for the next few weeks – choke them down if need be. Having two big salads a day for six weeks really helped give my body the upper hand. The virus is not gone though. I made the mistake of being talked into going on a family camping trip this weekend. I had a really good time the first day – swimming in the lake, walking the village and local ghost town – next day – was so tired wanted to cry – that is a sign of crashing for me – the need to cry. Today will be a bed day. I hope things will improve quickly for you!
Charlotte said,
July 25, 2010 at 5:52 am
Serenamuse,
Thank you for your post. I had a similar experience. I went on a camping weekend a couple of weeks ago to try and get some fresh air and take my mind off things. I took it easy and didn’t do anything too strenuous, but it really took it out of me. I am struggling with a full work week too, and am in talks to reduce my hours. I battle through each day and then just come home and lie down all evening.
The pain and aches that were only really in my muscles are now also in my joints – especially my elbows, knees and hands. I have also had two really nasty attacks of mouth ulcers (about 8 or 9 at a time).
My Dr keeps telling me there is nothing they can do except treat the symptoms and wait. The throbbing pain in my lymph nodes (neck and groin) is constant. Sometimes I just want to stay in bed all day, but I know that will just make the joint stiffness worse. I am struggling to find a balance.
Donna Yarema said,
July 22, 2010 at 6:43 am
I found this blog tonight and can’t believe there are so many w/Parvo B19!!
I was diagnosed finally Nov 2008 after going to the 7th doctor. accupuncture and cupping has helped.juicing carrots with garlic also helps tremendously for my legs. when I get bad- I juice every 2 hours for 48 hours.my hands dont sseem to be getting better but my doc gave me arthoTec and this does help. its just very expensive. I also make a tea out of eucommia bark and red chineese dates. and putting my hands in parafin is heavenly. hope some of these tips can help ohters. right now I think I have walking pneumonia- and hoping the z pack takes care of that.
Donna
serenamuse said,
July 22, 2010 at 6:17 pm
Wow, thank you Donna for your suggestions. I’ll definitely give some of them a try. I hope you improve quickly. Glad you found the blog!
Serena
Stephanie said,
July 25, 2010 at 1:20 pm
This is for Charlotte
I know sometimes parvovirus is a trigger for other autoimmune diseases….one of them being lupus. Having mouth sores is a symptom of lupus and being that you’ve had so many, have you been tested for it? If not it might be worth considering.
Good luck and please let me know how things go.
Charlotte said,
July 28, 2010 at 1:14 am
Thanks Stephanie. I have had another flare up of mouth ulcers (about 6 this time) and have been reading you link. It sounds possible; I will mention it next time I see my Dr.
I did have an itchy, scaly rash on my v-neck area and legs in April/May that was aggravated by the sun, but not had it since. I assumed that was the parvo rash at the start of infection.
serenamuse said,
July 26, 2010 at 6:09 pm
I don’t encounter the mouth sores, but right now the glands in my arm pits and neck are so painful. I had a very stressful week and am paying for it. I’m not familiar with the symptoms of Lupus. It would be worth looking in to – but again – is there anything they can do for it?
Stephanie said,
July 26, 2010 at 7:06 pm
Oh I’m sorry, the message I wrote was intended for Charlotte. (She was responding to a message dated July 25th). There was no “reply” at the end of her message and therefore I couldn’t respond directly to her. I hope she see’s it.
I’m sorry you are experiencing pain, I hope it doesn’t last long. Lots of rest and plenty of water.
I want to share so much of what I am experiencing with everyone, I could probably write a book about it. I’d have to say that getting your ANA tested (antinuclear antibody) if you have not already, might be a good idea to see if you have an autoimmune disease triggered by parvovirus. I’ve had that done and my ANA tested positive…my doctor’s just aren’t sure which autoimmune disease I have yet. Time will most likely tell.
Feel better!
serenamuse said,
July 27, 2010 at 11:35 pm
Stephanie, I’m not familiar with ANA. Do you know where we can learn more about that? Is it something covered by most insurance?
Stephanie said,
July 27, 2010 at 11:53 pm
Here is a site explaining in great detail what ANA is and why a doctor may order the blood test in the first place.
http://www.labtestsonline.org/understanding/analytes/ana/faq.html
In my case my insurance company covered the cost of the blood test. I would always recommend checking with your own insurance company first.
serenamuse said,
July 28, 2010 at 12:30 am
Thanks! I’ll look it over. Perhaps it is something I should add to the resource page…
Lisa Y said,
July 28, 2010 at 3:01 am
That’s really interesting. I tested positive for ANA 10 years ago when going through fertility treatment… a full 8 years before I got parvovirus. I have no idea what that means but I also tested positive for the lupus anti-coagulant antibody. And I have a underactive thyroid, my immune system is a mess and nobody seems to think they are all related. My doctore still maintains these are all unrelated things….
Oh my!
serenamuse said,
July 28, 2010 at 3:18 am
Lisa,
That makes me so angry. Come on! Our body is a system, it works as a whole, not parts. Of course they are related. That is just plain logic. I had an infectious disease doctor who told me that the Parvo will alter every system in your body. I believe that. I can’t think of any aspect of my body that has not had some sort of strange symptoms at one time or another. Head aches, blurred vision, pain in my mouth and jaw – I can just work my way down describing all the bizarre symptoms. I also believe that my immune system was weak and made me more susceptible to getting the chronic Parvo.
Charlotte said,
July 28, 2010 at 6:03 am
I am still in the early stages of working out what aggravates my aches, pains and fatigue and I have noticed that it appears (so far) that the pain eases slightly during the week I am not taking my birth control pills. Has anyone ever found this link before. Could the hormones in the pills be adding to the problem or is this just coincidental?
Kristin said,
August 10, 2010 at 7:32 pm
I have had parvo since March 09. My whole life has changed. I am married with 4 children under 12. I am focusing on nutrition, rest and working on forgiveness. I believe we can stress too much, try to get too much done, not trust enough, not take time out for ourselves and not eat good nutrition. All of this combined makes for a perfect storm for a devil of a virus. The more I learn on nutrition it makes me realize how messed up it is in the US from mass production and greed combined with drug companies greed and a media who is corrupted also. Keep learning and doing better nutrition, keep getting closer to God–He is the ultimate healer, and get rest. I believe the body can fight off this disease but it will take time…you have to heal on thing at a time and all things do affect each other. Your spirit and your body are not separate either, they work together and when one goes down so will the other eventually especially when we are holding onto wounds from our own wicked behavior or someone else’s actions. Offer your pain and suffering to the Lord and He will exchange it for Graces for you and your loved one to grow in LOVE,FAITH, AND HOPE. Do not waste this suffering…use it to help chang the world around you. Have HOPE and pray for Humility , for without it we cannot move forward in our relationship with God. We and will can get through this…one day at a time.
God Bless all of us living with any mysterious illness:)
PS Baclofen, which is a spinal muscle relaxer helps me with the overall horrible body pain. I do think my virus is hanging out in my spine…does anyone else feel that way?? I have tried so many pills and nothing seems to help.
Kristin said,
August 10, 2010 at 7:40 pm
Also I wanted to add that I am doing Nurtition Response Therapy which is a form of homeopathic medicine. I do believe everyone should see a homeopathic doctor of some sort, but get references from people who have tried them. They are not all the same. I have been battling endometriosis for several year and was getting ready to have hysterectomy and the nutrition(homeopathic) guy started treating my for it with nutriton supllements and i have been pain free ever since and was able to cancel my surgery. Even the Medical doctors have nothing for endometriosis. DO NOTt just go MEDICAL–TRY HOMEOPATHIC TOO>>>go at this thing from every angle and we will win we will beat this virus:)
serenamuse said,
August 10, 2010 at 10:02 pm
Kristin,
Welcome. I appreciated your comments. I have learned so much about nutrition the past two years and am continuing to learn all of the time. It is a process. I too recommend seeking advice from outside traditional medicine. That is where I have received my best advice. A positive attitude is so helpful and I must say that it is a constant effort. I go along doing so well, then get flored by something and immediately start to fear and question, get down on myself.
This summer I read Illness as Metaphor by Susan Sontag. It is an easy, quick read and was really so good. I recommend it for anyone dealing with chronic illness. It will open your eyes to some of the traps of thinking that we all fall into or have faced with this illness. For instance she covers the history of tuberculosis and cancer and the myths that somehow the person suffering the disease has brought it upon their-selves – perhaps by too much stress, or holding in emotions etc. The bottom line is, it is a disease is not something that you have power over. You did not ask for it. Do read it – very good book.
Charlotte said,
August 10, 2010 at 10:21 pm
After having a terrible time last week with aches, pains, fatigue and vision/memory/concentration problems my Dr has put me on some new medication and the results are fantastic. My general muscle aches and pains have gone from an 8 or a 9 (10 being the worst) to maybe 3 or 4, and sometimes 0. I am still having trouble with my vision and dizziness and with my lymph nodes in the back of my head and groin which are still very sore.
The medication is Elavil and was an anti-depressant way back when. It is now used in chronic pain management in low doses (10mg a night for me). It is used in the treatment of fibromyalgia, which is why my Dr recommended it. You take it before you go to bed and it has sedative properties so helps you sleep through the pain too. There are some side effects, but not too bad at such a low dose. I have started having weird dreams and the first few nights I was on it I was tossing and turning a lot in my sleep.
I am still only managing to work part time, but I hope this is a turning point for me. I only got the medication 5 days ago, but it has had such a good effect I hope it continues.
serenamuse said,
August 10, 2010 at 10:58 pm
Hi Charlotte,
I was at one time put on Cymbalta – which was also first introduced for depression but now used for pain with fibromyalgia. I did find it helped with the pain, though only for a few months. I also found I gained weight which was impossible to get off until I got off of the Cymbalta. Also, beware – they told me a year after being on it that once on you are never intended to get off of it. I did get off of it, but it was a terrible couple of months – wanted to kill everyone around me. Now, of course these are not the same drugs and everyone responds differently so I hope your experience is much better. I just know after my experience with the Cymbalta I will not go that route again. Good luck!
Charlotte said,
August 27, 2010 at 5:27 am
A little while has passed on the Elavil now, and I am getting better each day – almost back to working full time. I went up to 20mg a day but the side effects were too much. 10mg is doing wonders for me and some time I don’t even need any other pain meds during the day.
The dreams and nightmares are the worst side effect, but at least I am sleeping and it is worth it to be pain free every day.
I take your warning though and just hope I continue to improve.
Thanks
serenamuse said,
August 27, 2010 at 7:41 pm
So glad that it is working! Let’s hope it continues and that your body can build up some reserves.
Best, Serena
Stephanie said,
August 29, 2010 at 2:32 am
Hello everyone
Just a little update. I had been feeling great for about a month, I was swimming at the gym and actually had gained back some energy I had lost. The fatigue was fading fast. I was actually thinking that just maybe I had fought this thing.
Bad news is I’ve been stressed lately, not finding the time to eat right and I am now having the WORST flare-up I have ever had. I have widespread body pain like I’ve never felt before. At first I thought “this must just be the flu”, however I have no fever and no other symptoms but the body pain. Removing my clothes literally hurt as I got ready to go in the shower yesterday. The good news is that I don’t have any added fatigue with it other than the I feel sick feeling.
Goes to show that diet and proper exercise along with the right amount of sleep helps. Anyone else have body pain this extreme? On a scale of 1-10 it’s at about 11 for me.
serenamuse said,
August 29, 2010 at 5:20 pm
When my body hurts from head to toe and I can’t stand it, I have my husband lie across my shoulders and roll his way down my body to my feet – squishing the pain out.
Stephanie said,
August 29, 2010 at 6:18 pm
I woke up today with a rash on my chest and back…has this happened to anyone? I still don’t have a fever and the body aches are a little better.
beeejjj said,
April 20, 2015 at 12:26 am
hope any reads-1 theres a movie caleed under our skin u can get from netflix-but they have discovered in the international lyme associations that also fleas and mosquitoes carry and that the tests that exists do NOT work as test for immunity-yet no one asked why the dogs in the US need the lyme shot EVERY yr!! rocky mtn spotted fever is also been epidemic over 20 yrs =and even thou dog ticks do not carry lyme-they do rocky mtn spotted fever-I know the bone and nerve pain to where u pray to die.There is no test-most dont even remember getting bit and it seeming like an infected bug bite-it messes w your short term memory fast-only lyme assoc drs know and were taught rt and are so hard 2 find-i did by accident but after many yrs on the floor even as i was bit so much somehow-and only 50 percent get a target rash the rest just have red itcth for more than a day-but the memory is so affected. that movie made me so angry to know that so much has been epidemic and they still wont admit to publics or even mainstream doctors
Stephanie said,
September 3, 2010 at 1:09 pm
Has anyone had the parvo virus rash reappear after feeling ill?
Charlotte said,
September 4, 2010 at 7:29 pm
Hi Stephanie,
Even though I am feeling a lot better now I am taking Elavil (4 months into Parvo), I am sure I keep getting the rash back after I have been in the sun a lot, or after a hot bath. If I forget to take the Elavil, or have a busy day all the tell tale signs of post viral illness come back (joint and muscle pain and fatigue). I dont know whether that means the virus is still hanging around or not?
Clare said,
January 4, 2013 at 4:07 am
I was diagnosed with parvo in Dec2011, spent 2 weeks in pain with fever and weakness so bad i was bedridden. The hives showed up almost immediately and traveled through my body…wherever the rash was so was the joint pain. Symptoms disappeared within a month, but by March2012 the hives began and have not gone away. Joint pain sporadically appears, but it’s been the hives that have made me so miserable. Every day for 10months I’ve been covered in red welps (mostly on arms and legs) usually showing up in afternoon and getting worse by evening. My skin feels raw and burnt and I feel hideous. I’ve seen a rheumatologist, dermatologist, and allergist…and none have an answer except that “80% of cases, we are unable to diagnose what is causing hives. Could be anything.” Allergist said only thing i was allergic to was dust mites, but hello! I’ve been around dust all my life and never had problems. I feel certain that parvo has something to do with this because recently my hives have gotten even worse, my wrists and elbows hurt, and it hurts to swallow….all same symptoms of when i had parvo a year ago. Rhemotologist ruled out lupus and RA, but he was terrible so I’m going to try another that will listen. Crossing my fingers.
Susan said,
January 11, 2013 at 12:32 pm
I have had chronic hives for years now. I was told I pretty much had to manage the symptoms and they can come one day and then suddenly decide one day to leave. I am still waiting. Not sure if I had parvo when they started as it was my only symptom, I was tested for parvo 6 months ago for the first time and it was positive. Although I do not like taking medications, the itch becomes unbearable unless I take a daily OTC antihistamine. Zyrtec, claritin, allegra, etc might help if you haven’t tried them yet. If I stop it for a day or two the itch creeps back. Best of luck!!
Stephanie said,
October 3, 2010 at 1:45 am
Hi Everyone
I’d really love to hear how everyone is doing. I’ve had a tough month. Pain, fatigue, etc. I was diagnosed yesterday with fibromyalgia. All a complete result of parvovirus. I’ve started Cymbalta today. I’ll let everyone know how it goes as time moves on. So far I’ve had a couple side-effects. Nausea and dry mouth. I really have been trying so hard not to go on medication, but I feel at this juncture it’s necessary. I’m afraid I’ll get depressed if I don’t try to manage the pain and fatigue.
I hope everyone is enjoying the fall weather. I know I am, although the cold hurts my joints I seem to feel less fatigue when it’s cooler.
Charlotte said,
October 3, 2010 at 2:11 am
Hi Stephanie,
I am doing OK, all things considering. After going part time at work in July and August I have been back full time for two weeks now. I am on Elavil, which is used a lot for Fibromyalgia (although I havent officially been diagnosed with it) and it works very well. I was also on 10mg/day of Cipralex to help me cope better with the pain and fatigue but now I am slowly reducing that (5mg every third day at the moment). It has now been over six months since I got this disease and the only reason I am getting up every day is the Elavil. I know all the symptoms are there underneath as I have tried to reduce this medication and actually missed a dose once and everything came flooding back. I hate being doped up all the time, and I am constantly dizzy, feint and have heart palpitations sometimes, but I am a lot better than I was a couple of months ago. I still get arthralgia, particularly in my hands. I hope the new meds work for you soon.
Charlotte
Lisa Y said,
October 5, 2010 at 1:32 pm
I have to say all this is no fun. The colder weather is making me feel really yucky. I am in the process of finding a new doctor and that makes it all so much worse….
Let us know how the Cymbalta works out.
Charlotte said,
October 18, 2010 at 3:00 am
Hi all,
I have had some more blood tests done recently and I just found out today there is an anomaly with my thyroid level. Not sure which way it is swinging yet, but I will find out at my next appointment. Is it common for Parvo to trigger thyroid problems? I have lost a lot of weight over the past six months, which would indicate overactive thyroid right? I also get palpitations in my throat every evening and am very dizzy on standing up – but I thought that was because of the Elavil, which I have managed to reduce to 10mg a day now.
C
serenamuse said,
October 18, 2010 at 4:48 am
I don’t know about the thyroid, but I too get the dizzy upon standing. Sometimes, I fall to the ground and just lie there for ten minutes or so till I can sit up again. I read that it was common with Parvo – has to do with the heart not pumping the blood fast enough to your brain upon standing. Has anyone else had this?
Tam Wedgwood said,
October 18, 2010 at 11:30 am
My daughter gets very light headed as well, sometimes fainting, also shortness of breath and some kind of palpitations. I think it is common- but we do have low blood pressure in our family, so she may be pre-disposed to these types of symptoms from parvo.
Also her hands and feet get purple and swollen (a bit like Reynauds)- her physical therapist said that the discoloration was due to blood reaching the ends of the limbs, but her muscles not being strong enough to pump it back again. She’s supposed to get her head down when faint & her feet up when purple.
Stephanie said,
October 18, 2010 at 5:47 pm
Hello
Just wanted to let everyone know that I started taking Cymbalta (20 mg) for fibromyalgia (result of parvo) and am feeling much better. My joints still bother me but the medication has helped with my fatigue…I have much more energy. The side effects the first week were unpleasant, I had a lot of nausea which is common with the drug but it has tapered off. I find that Cymbalta has really helped with the overall sick feeling I was having.
Charlotte I have had my thyroid checked and it was normal however I think parvo may trigger many different things. Has the Elavil helped you in any way?
Charlotte said,
October 18, 2010 at 6:31 pm
Yes, enormously. Within a couple of days of starting on Elavil (for the pain) and Ciprolex (to cope better with the chronic illness), I was up and about and working full time again a few weeks later.
I am having to reduce them slowly now, as the dizziness is getting quite dangerous, and to be honest I think I can cope without the Ciprolex now, and with lower Elavil.
My thyroid was checked at the start of all this, before they found the parvo, and it was fine, which suggests it has been triggered by the Parvo, or the drugs.
Cindy said,
November 1, 2010 at 6:32 pm
Hey ladies,
Too exhausted to go into detail at present-41yr.old female- chronic Parvo here too (initial outbreak 2 1/2 yrs. ago)- many recent flare ups- my doc. who was great for 3 yrs. started ignoring me when I brought up the flares and my suspicion of Parvo/flares/arthritis/cfs….tried to enter grad school- couldn’t follow through-very bad scare with legs 3 months ago- couldn’t walk- then to arms- wrists etc…just had a full panel of everything done on my request- he agreed through nurses- my follow up call from very young girl in office “It’s related to your mood, you can come in to discuss it if you want to make an appt.”-
This great doc. joined the band wagon of SO MANY OTHERS- why? WHAT IS GOING ON? (granted, he can get away with it because I did burn out after the parvo and my diag. was anxiety/dep. one year ago) But I was very clear- it’s the parvo- no doubt- and I have NEVER had any of these symptoms prior to Parvo.
My dad is super worried (diff. state)- as I – days I can get up- days I can’t- disability just ended- can only do certain jobs….I have been searching for a Parvo expert/doc for a long time- This has to break soon…..there must be some docs out there that are devoting their life to this. ANY THOUGHTS FROM ANYONE? CONTACTS?
I am on the east coast.
Many Blessings, lots of prayers and tons of support AND UNDERSTANDING,
Cindy
Stephanie said,
November 2, 2010 at 4:05 pm
Hi Cindy
I am so sorry you are going through this. I too have been suffering from parvo for 1 1/2 years. I am finally finding some relief with Cymbalta. I was diagnosed 1 month ago with firbomyalgia by a rheumatologist in Boston. A complete result of parvo. I also have neurological issues, but all major diseases have been ruled out. The doctor I have seen did do some research for me on the effects of parvo and he was dead on diagnosing me with fibro. I have all the symptoms for it. Chest pain, fatigue, body aches, rashes, joint pain (gets worse with cold), and the list goes on.
I have to say, I’ve always wanted to talk to any one of you here on this blog via phone to share and compare experiences. It’s healing for me to discuss my issues and of course I love helping anyone who may also be sharing the same experiences. Knowledge is power.
Please go see another doctor. I’d start with a rheumatologist.
I hope things turn around for you and the flare ups are momentary. Feel better.
Cindy said,
November 2, 2010 at 4:19 pm
Stephanie,
I hear you AND understand your discomfort (and everyone else’s)…Thank you for the ear and support- my post lacked clarity and articulation, but, I knew this “crew” would understand….
Sounds like you found a good doc. Rheumatologist is the next step- I couldn’t even afford the co-pay to go- I am working on this and waiting to hear when insurance finally cancels…
I would be happy to share via phone- do we have a safe route to pass along our numbers on this blog? Don’t want to overstep any rules…
How are you making ends meet Stephanie?
It’s a good morning so far…thank you for the kind words.
Praying that it is pain free morning for each of you as well.
Many Blessings-
Stephanie said,
November 2, 2010 at 4:15 pm
Cindy
Just don’t give up…It’s not your mood and everyone here supports you. There is something physically wrong with us and unfortunately there isn’t enough research done on the long term effects of parvo for doctors to give us a definite answer, but I think that if we just keep talking about it and letting doctors know that this is a problem that someone is bound to listen and eventually take action. I’ve made it a point to tell doctors about this blog and I really do think doctors are listening. My childrens pedi said to me “well you have my attention” after the long list of symptoms I had after coming down with parvo. I don’t want to see one more person effected by this.
Cindy said,
November 2, 2010 at 4:21 pm
Thank you so much- I truly appreciate this….truly…
Andrea Boundy said,
November 4, 2010 at 2:00 pm
Im so pleased that I have stumbled across this blog. My story is much the same as all the others. Feb 2007, 3 yr old and 6 yr old bought the virus home. They both had the rash and thats all. I got rash, fever, aches and pains, extremely cold hands and basically felt like I was dying for about 4 days. Went back to work not feeling 100% but able to work. Then about 6 months later I thought, this is weird, feels like slapped cheek again. Anyway, to cut a very long story short, its now Nov 2010 and Im still suffering. In the meantime I have been tested for RA and MS. AGHHHH! Im goin down the route of healthy no animal fat diet.
serenamuse said,
November 4, 2010 at 4:42 pm
Sorry Andrea. Yes, it sounds very familiar. I hope the diet does as much good for you as it has for me. What part of the country do you live in? Do you have Trader Joes Grocery stores? I have staples I purchase from there. Though have a good local produce place for fresh fruit and veg. Chipotle is a good choice for eating on the road – the black beans are vegan – the pinto are not. You can make an excellent veg salad with the black beans, salsas, guacamole, corn, rice etc. Gosh, I think I’m hungry!
Andrea said,
November 5, 2010 at 1:47 pm
Im in England.
At the moment Im taking iburofen and paracetamol for the pain and relying on coffee to keep me awake. Havent been to the dr in over a year, there’s no point. Its a case of if you want something doing, do it yourself.
serenamuse said,
November 6, 2010 at 6:59 am
Andrea, I was in England when I caught the virus – Norwich. My doctor was at the University of East Anglia and was very thorough with his tests, but he too kept telling me that the virus was gone and it was just post viral fatigue and that I needed to keep positive and push through. I do know that since that time the univeristy has been doing a study on ME and I hoped that they might relate some of their studies to parvo. It seems that many of the current studies on Parvo are being done in the UK so hopefully the seriousness of the virus will make it’s way down to the GPs. I’ll let you know if I see any more studies out soon. Perhaps you could take them in?
Serena
Cindy said,
November 8, 2010 at 8:54 pm
Any idea why my posts wont “post” – 3 days now- will see if this “reply” works….thanks
Cindy said,
November 8, 2010 at 9:01 pm
Perhaps a site below may hold an answer for each of you…
Blessings and support-
http://www.biomedexperts.com/Concept.bme/25480/Human_Parvovirus_B19
http://www.labome.org/topics/virus/dna/parvoviridae/erythema-infectiosum-5152.html
http://www.endocrine-abstracts.org/ea/0022/ea0022p795.htm
http://forums.wrongdiagnosis.com/showthread.php?t=29056
http://www.labtestsonline.org/understanding/analytes/parvo/sample.html
http://www.forums.aboutmecfs.org/forum.php
Click to access A22.E205.pdf
http://www.scivee.tv/node/6897
http://ehealthforum.com/health/topic33442_20.html
http://in.answers.yahoo.com/question/index?qid=20080310023015AAXbCcT
http://www.nejm.org/doi/full/10.1056/NEJMc0911362
http://www.centerwatch.com/clinical-trials/listings
http://www.city-data.com/forum/health-wellness/415799-chronic-adult-human-parvo-2.html
Click to access Kerr-4.pdf
http://jcp.bmjjournals.com/search?fulltext=Parvovirus&submit=yes&x=7&y=9
http://vir.sgmjournals.org/cgi/content/short/91/4/893
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Link&db=pubmed&dbFrom=PubMed&from_uid=20007355
http://www.hetalternatief.org/de%20Meirleir%20Infekties%20Darmen%202009%20542.htm
http://health.groups.yahoo.com/group/TheMirandaMission
http://www.dailystrength.org/search?q=Parvovirus
serenamuse said,
November 8, 2010 at 9:21 pm
Sorry Cindy,
The site must have seen all of those URL’s and assumed it was spam- I never saw it – just went right into spam. Sorry! Wow, you put a lot of work into that. Thank you.
Serena
diane said,
November 5, 2010 at 1:27 am
Well I thought I’d finally post.
I’ve been in disease limbo for 2.5 years. It started with 4 bouts of meningitis. I found posts here from “Gary” – his bouts of illness sound like my bouts of meningitis. I had a low grade fever, stiff neck, back ache, searing headache and major fatigue. I would last for a few weeks and then seem to be better (but not perfect) and then it would come back again but not quite as bad. Every test for WHY I might have meningitis came back negative.
I felt better for a few weeks after the 3rd bout and then I had surgery. They thought I had a hole in my head so I had surgery. No hole but they cleaned out my sinus polyps and then I was sick again and fatigued and achy and low grade fever for the rest of the month.
Since 2009 I have had a headache basically every day that starts around noon to 1. I have bad brain fog with the headaches and moodiness. I finally started taking Cymbalta and Topamax and Nortriplyne.(sp?) and oxycodone.
Then last December both knees started feeling like I had arthritis on the same day. And it was like RA, very stiff, worse at night, last all morning, I had swelling at first.
Even before all the meningitis I had issues with swollen feet and hands and had test positive for Rheumatoid Factor.
After the knees I went to a rheumy doc again and I was still RF positive.
I just moved to New Orleans and went to a new rheumy. She was the first to bring up parvo. She ran tests and I’m now negative for RF for the first time in 4 years and I have tested positive for parvo. I just had the blood drawn for the PCR test. And she mentioned that if it’s positive we would do the immunoglobulin.
My bones hurt around my joints. I’m on a provigil now just to help me stay awake during the day. My memory is crap, and I am larger than I have ever been. I’ve had bouts of racing heart rate and issues with catching my breath.
I know it sounds strange but I’m hoping the 2nd test comes back positive. Otherwise my doc will tell me that it’s not parvo giving me these symptoms.
serenamuse said,
November 5, 2010 at 4:25 am
I know how you feel about wanting answers. I swear I used to wish anything would just show up positive so I could put the right label on it! Good luck. Let us know how it goes.
jeremy said,
August 31, 2011 at 11:48 pm
Hey Diane-
Similar story- What’s your update?
Cindy said,
August 31, 2011 at 11:49 pm
It’s Cindy, not Jeremy- sorry-trouble logging in…
Andrea said,
November 6, 2010 at 2:47 pm
Does anyone get the tingling throughout the body? That symptom annoys the hell out of me.
Catinminnesota said,
November 21, 2010 at 5:06 am
OOOOOOHHHHHHH YYYEEEESSSSSSSS
Thrumming of a guitar….. is how I heard it once and yes.. annoying is an understatement!!
I often wondered why it does that.. I had a nerve/Muscle test done.. all was fine.. weird.. this disease is weird, no doubt!!
Best to all.. I hope my other posts come back on.. they were long!!!
Stephanie said,
November 6, 2010 at 7:43 pm
I get tingling sometimes in my mouth, hands and feet. It started 6 months after coming down with parvo virus and has persisted off and on since.
Charlotte said,
November 8, 2010 at 7:57 pm
I have just found out I have hyperthyroidism (overactive thyroid gland). This has almost certainly been triggered by the parvovirus, as I had it tested as part of my original diagnosis in May and it was normal. Symptoms that led to this diagnosis were weight loss, pounding of heartbeat in throat, hoarse voice, extreme dizziness and itchy skin. Please be aware that it is quite common for parvo to have autoimmune disease triggers such as this and watch out for the symptoms.
My other parvo symptoms are still under control with Elavil (now only 10mg a day, and about to start taking as and when needed). I have also found that mild pilates/yoga helps to take the pain out of my joints and muscles, as does regular massages and epsom salt baths.
C
Charlotte said,
November 20, 2010 at 3:00 am
After a few months of relief I appear to have had a relapse over the last few weeks. All my pains have come back in my arms, shoulders, neck and head. I had my TSH tested a couple of weeks ago and it was very low (0.7); now it is 0.2. This matches all my symptoms of hyperthyroidism, but strangely my T4 is not high (awaiting results of T3). I have also had an ultrasound of my thyroid this week, which is unnerving (awaiting results). I have been having a lot of palpitations in my throat and a dull ache/throb. It’s been 7 months since I contracted this disease and it is showing no signs of giving up.
Cathy said,
December 10, 2010 at 12:16 pm
Charlotte,
Hello.. how are you? I have alot of pain in my neck/upper back.. hard to deal with sometimes!
.07 is what my TSH was at as well.. low end of the scale… but still in so my Dr. has no worries… you said when 1st tested your TSH was normal.. what was it at, do you know?
Best to you.. did you see the internal medicine Dr. yet?? What did the ultrasound look like???
Cat
Charlotte said,
December 11, 2010 at 3:47 am
My TSH was tested in May when I first got infected with Parvo. It was ‘normal’ apparently. I got better over the summer, taking Elavil on a night time. I recently went downhill again. This has coincided with very cold winter weather, getting the flu shot and getting a cold. All the parvo symptoms have come back, along with a constant heart rate over 100, palpitations, dizziness, nausea etc. My thyroid was 0.7, then 0.2.
I have been to see the internal medicine specialist. I still have a low TSH, high heart rate, very over sensitive reflexes etc. T3 and T4 have been tested again (waiting results). I have also had a VQ scan and ultrasound of legs and echo of heart, along with hundreds of other blood tests. He seems very thorough and is doing his best to get to the bottom of whatever this virus has caused.
Ultrasound of thyroid was normal, but still feels very swollen and stiff neck. I have also been referred to an Endocrinologist and ENT in the New Year.
Epsom salt baths continue to help my pains. Massage helps too, but not too vigorous! I hope you feel better soon.
C x
Catinminnesota said,
November 21, 2010 at 5:02 am
Hello..
I posted a # of posts and now I can’t find them on the site.. I hope they are not lost?????
CatinMinnesota
Catinminnesota said,
November 21, 2010 at 5:23 am
Found it.. in “My Story” OPPS
Another fellow Parvo.. sufferer.. glad to have found this site…. I’ve had this since 4-09… now Lupus… CFS???
Please read more on the My Story page if you wish!
Take care,Cathy
Charlotte said,
December 1, 2010 at 2:23 am
Hi all
A bit of an update. After my latest round of blood tests and thyroid ultrasound I have been referred to an internal medicine specialist and have an appointment on Friday. Have any fellow Parvo sufferers been to see an internal medicine specialist? Any advice/pointers on what to discuss or ask?
Thanks
Stephanie said,
December 11, 2010 at 4:24 am
Hi Everyone
I just wanted to remind you all that I’ve been taking Cymbalta (20mg) for about a month and have seen amazing results. I was diagnosed with fibromyalgia 1 1/2 after coming down with parvovirus and was going downhill fast. I was depressed at my lack of energy and pain at the age of 29.
I now have energy, my hands and joints don’t hurt much anymore, and I can finally get through the day without having to rest.
I am also taking a Vitamin D supplement and probiotic supplement (ProSymbiotic from Standard Process).
I hope this helps. Is anyone else taking Cymbalta? Hope everyone has a safe and happy holiday.
Charlotte said,
December 11, 2010 at 4:32 am
Hi Stephanie
I am glad you have found something that works. When I found Elavil it was like I had been given my life back…or at least part of it. Elavil and Cymbalta are both good at helping with fibromyalgia and general post-viral myalgia and arthralgia.
I have had the post viral pains for 8 months now, in my upper back, back of the head, and arms. How is fibrmyalgia distinguished from post viral myalgia in cases like this?
Thank you for sharing
C
constance said,
April 18, 2011 at 5:06 am
I’ve had parvo for about a year now. After the initial onset, I was fine for about 8 months. Then I had a flare up which has lasted almost 2 months. The joint pain and swelling, and bloating all over is terrible. Is anything helping anybody with this?
Stephanie said,
December 28, 2010 at 5:20 am
Hi
Just an update…I’m not doing well. Lots of stress in my life and not finding time for proper diet and rest. I will probably need to go up on my dosage of Cymbalta…I have an appointment coming up in January with my rheumatologist.
I’m having recurring rashes on my neck and upper torso, parasthesia in all extremities, arthralgia symptoms and lots of pain in my hands. I feel myself becoming more and more tired as well.
Anyone have any good news to share? I’d love to hear something uplifting. Has anyone tried anything new that they’ve found has helped them?
Hope everyone has a happy and healthy new year!!
Cathy said,
December 28, 2010 at 3:23 pm
Hello..
well I to have been quit sick though the holidays (my family as well) .. really feeling tough… went to the Dr. gave me antibotics.. maybe Strep, ears had fluid.
I have alot of ear pain all the time with the Parvo.. but it is much worse…my system is working hard that is forsure… lots of Motrin… and all other cold products/remedies!!!
I have alot of the pain / and Very Tired as well..I did not know what Paresthesia. was… was so I goggled it.. I guess that is most likely what I have to…in the exteremites… and through certain parts of my body, it comes and goes (mostly hands and feet)… drives me crazy!!
Working on getting in to the Mayo.. they actually siad that Parvo would be sent to Infectious Disease so that is good news.. or I may get in through Cardioligy.. as I have the shortness of Breath problems… hoping to do that so maybe I could be tested with the Endopat.. to check for Inflammation.. will post .. any info!!!
I have been having alot of lightheadness/ exhaustion / worn out feeling when bending over (say to put boots on).. scares me!!
My Dr. says to Exercise.. I wish I could.. I feel as though it will use up my energy..and I’m a bit worried about that with the shortness of Breath and I read that people with CFS.. possiably should not be exercising???
Stephanie..I wish I had better news to share…. Take care!
Take care and a blessed New Year to you all!
Cathy
Tam Wedgwood said,
December 28, 2010 at 6:59 pm
Hi Cathy,
I just wanted to comment about exercise- when our Doctor said thta to my daughter we almost laughed- she was bsically bed-ridden at the time & had been so for about 3 months- constant pain, breathless, lightheaded, no energy. Even coming down stairs would exhaust her completely.
But the doctor recommended pool therapy to start with. After the first session in the pool with a physical therapist her pain level dropped noticeably & as she went on with the pool therapy she found that each day she could do a little more- get out of bed for longer, or walk across the room without getting breathless and dizzy at first. Then go into the yard. Then go for short walks. Then swimming. I know it sounds impossible when you are at the satge you’re at, but seriously I think you should try it- exercise did work for us. My daughter has had Parvo for 10 years with CFS, fybromyalgia, arthralgia, Raynaud’s & chronic pain syndrome – & symptoms like lupus only she tests negative for lupus. She has been really, really sick & now she is back in full time school after 2 years when she couldn’t attend school. The secret for her has been: pool therapy, vitamin B complex and gradually increasing exercise. The B-vitamins help with CFS, but i read recently that scientists are discovering Vitamin B also helps reduce pain. Without the pain you can sleep better and you can mve mor easily.
Good luck- but do try the exercise, it sounds crazy & impossible, but it does work.
Stephanie said,
December 28, 2010 at 8:29 pm
I’m so glad you mentioned this…I too was using the pool for therapy at one time and it was working. I was doing laps 2x a week. The only issue I have now is that I’m a mom of 2 young children, my husband works long hours and I’m afraid to have the kids use the daycare at the gym because they always catch something there and bring it home, and as you know getting sick causes all sorts of problems for people suffering from parvovirus.
I’m hoping that in the summer I can go back to it. Thanks for posting.
Charlotte said,
December 28, 2010 at 9:54 pm
Merry Christmas to you all, and a Happy New Year. I hope you are all feeling better soon. I will take on board your comments about swimming and B vitamins in the New Year. I was suffering a lot after I had the flu shot (on reflection my Dr said I shouldn’t have had it). Make sure you check with your Dr’s before you get it, if you haven’t already. I was tested for strep as I have a lot of pain in my throat, but it was negative (most likely from the hyperthyroidism).
My Christmas was relatively pain free, but I came down with Norovirus this morning, which is sweeping the UK. Hopefully it won’t reactivate too many parvo symptoms. I have an internal medicine Dr, ENT Dr and endocrinologsit lined up to try and help me in the New Year.
Best Wishes
Stephanie said,
December 28, 2010 at 11:12 pm
Charlotte
Is the Norovirus a stomach bug? I supplement with probiotics every time I come down with stomach bug or after I take antibiotics. It helps to restore healthy bacteria back into the gut. Taking probiotics also helps a person absorb nutrients better. Google probiotics for some more info if you don’t know much about them already. Feel better!
Cathy said,
January 1, 2011 at 5:17 pm
Hello… Happy New Year!!!!!
Charlotte.. you have the Norovirus.. yicks.. my daughter was hospitilzed for that when she was 3.. she could not stop throwing up.. it was terriable!!!
So are you feeling better?
I have a large favor to ask… you are in the UK, is that correct??
I have been trying to get in touch with Dr. J.R. Kerr.. from the “Successful Intravenous Immunoglobin Therepy” study that he performed in the UK.. and all of the email address’s that I have found on him… get kicked back???
From what I can tell he is in Manchester, UK or at least that may have been where the study was perfomed? Any help I would sure appreiate!!!
I wanted to mention that I started to take… Co Q 10 lately.. before I came down with the cold/Flu recently and I think that it may be helping the energy some??? It is suppose to help the cells function better, so I thought I would give it a try?
Happy 2011… Cathy
Charlotte said,
January 10, 2011 at 3:26 am
Hi Cathy.
Sorry for the delay in replying – we have just been in the middle of emigrating. Which answers your question about living in the UK – not anymore. Although I see you have had some luck with the Mayo clinic? Are you still chasing the clinic in the UK?
The Norovirus was horrendous, but the vomiting etc only lasted for about 4 hours. I was bed ridden for the rest of the day/night however. I was so dehydrated, no drugs left in my system etc – the parvo pains that night were as bad as they have ever been. I couldn’t move a muscle or do anything but cry. Colds, flu, stress etc all flare up my parvo symptoms.
Good luck with your Mayo clinic – I hope you get some answers to make you feel better, and share with us all.
Charlotte.
Cathy said,
January 10, 2011 at 3:56 am
Hello Charlotte..
Glad to hear your better… my daughter was soo sick with that… it was scary in the hospital for 3 days…!!
Yes …I am still trying to find a email address that works.. for Dr. Jonathan Kerr…. just came across another one tonight.. jkerr@sgul.ac.uk kicked it back.. + 3 others.. j.kerr@imperial.ac.uk unitedkingdom.j.kerr@imperial.ac.uk and uk.j.kerr@imperial.ac.uk so if you ever have a sec. that would be great… not sure if you were maybe familiar with the hospital or org that he is associtated with?? I’ll keep trying!!!
Take care…… we say in the states that we are moving…when you move to a new home.. it is emigrating.. interesting??
OOHH I hope the Mayo can give me some answers…. I’m very optimistic!!!!! I have ooodddess of paperwork for them.. proving that this Parvo is NASTY… even in small #’s…… we are the small numbers that the paperwork is referring to!!!
Thanks..Hugs… Cathy
Charlotte said,
February 8, 2011 at 4:55 am
Cathy
I too have tried the email addresses for Dr Kerr stated in the research papers, and they bounce back. I believe he is working at University College London http://www.sgul.ac.uk/about-st-georges/divisions/faculty-of-medicine-and-biomedical-sciences/cellular-molecular-medicine/section-for-clinical-medicine-1/section-for-clinical-medicine/?searchterm=jonathan%20kerr.
I will give the University a call tomorrow and try and get a proper email address. Failing that I will put a letter in the post and pray it gets there. https://parvovirus.wordpress.com/about/#comment-549
I presume you have had no luck getting through?
Charlotte
C. said,
January 2, 2011 at 8:43 pm
Happy New Year! I am in month 3 of being pain and symptom free from Parvo that I had for 2 years. My 3 children don’t even know how to “handle” my energy. It makes me sad that they are almost in shock and so happy to see me “alive again”. During my illness I was afraid to take anything- cymbalta, prescription, etc because of a negative reaction I had with medicine when I was a teenager (even though I turn 40 soon I am sill scared of prescription meds!). I took epsom salt baths, drank a capful of peroxide mixed with h20 a few times a week, and liquid olive leaf. I destressed my life as much as possible and prayed/trusted! I’ve read about remission of parvo in this site- does it ever go away- or am I just in remission awaiting a flare up?
Cathy said,
January 10, 2011 at 2:26 am
Hello everyone, well I have REALLY exciting news, it sounds like I will be able to go the Mayo and see that Dr. (Cardioligist) that invented the EndoPat, (Dr. Lerman) to check for Infam. in the blood vessels, (endothelial Inflam) so will post on the outcome of that, hopefully in Feb.!
CINDY…. please email at jeffncathy12@yahoo.com anytime to chat/share about this dreadful disease, please note in subject bar, parvo/ or something so I catch it!
ANDREA… Yes to the tingling… thrumming a guitar was quoted once.. to me that is the feeling/ its on and off/ comes and goes/ not sure what makes it come or go?? It was mentioned that maybe the “Internal Tremor”‘ as described by some could be a sign of this endothelial inflam.?? Perhaps the blood vessels are inflammed and go into spasm?? And this resonates like a string on a guitar??
MELODY… you were able to get IVIG… was it because you were anemic.. do you know??? And how are you doing now???? Did you test positive for Parvo??
JENNIFER…… WOW you were able to get IVIG… based on the Parvo result alone?? By an infectious Disease Dr.? Was it a struggle to convince the Dr. to do it??? Would love to hear more….How are you most importantly?
Was there painful side effects?? When I go to the Mayo, I would like to try to see an Infect. Disease Dr. as well, so any info that you have would be GREAT!!!!
C…. so happy your feeling better!!!!! Great to hear!!!!!!
CHARLOTTE… hope that you are feeling better!!!
TAM / STEPHANIE… thanks so much for the info on the Pool therepy, I LOVE to swim!! Tam.. glad your daughter is improving… she deserves to get better!!!!!
Has anyone had elevated Blood work… ANA Titers/ or DS DNA Antibody???
How is the Cymbalta working…any side effects???
Thanks…. my Best to all, Cathy
If anyone would like… to email me to chat PLEASE do.. jeffncathy12@yahoo.com !! Please mention in Subject bar!!!
serenamuse said,
January 10, 2011 at 3:01 am
Excellent news. I sure hope it is productive. Funny, I was in Rochester for Christmas and my father in law gave me a tour of the Mayo Clinic. It is a beautiful building, custom hard wood furniture, unique lamp fixtures, lots of marble and art. If that is any indication of their care… should go well!
Cathy said,
January 10, 2011 at 3:31 am
Hello.. I noticed you said that you were in MN. Do you live Calf.?? Mn in Demember.. are you crazy?? This winter is something else!!!
I have never been there…. I to hope that it is productive..I’m worried as I’m sure the cost will be crazy!! Lets hope that he finds the culprit!!
Hugs to you… love this Forum! Cathy
C. said,
January 10, 2011 at 9:43 pm
Hi Serena- Glad to hear you get to go to Mayo. We will all be anxious to see how it goes:)
I am still symptom free..month 4…still scaredit will return!
I had extensive bloodwork 2 times last tear with the Arthritis Dr. I saw. In 7/09 I had “out of range” “40” titer ANA…and also ANA Pattern said “homogenous, “No pattern”. What do each of those possibly mean? Also I see in the “out of range” category it says Bacteria and Mucous- “rare”. ALK Phos was “out of range” at 33L .. For3Parvovirus B19 Antibodies I says Results suggest past infection.. At the bottom of one of my pages it says “performed at MAYO Dept of Lab Med & Pthology in Rochester, MN.. These are the only things that appear not normal on the appx 6 pages of bloodwork I had.
In 11/09 ANA was still out of range at 80, ANA Pattern was still “homogenous”, SM Antibodies (SM/RNP Antibody was out of range at 35 H. I was told to not worry about it– but Should have asked what it means. Does anyone know?
Cathy said,
January 12, 2011 at 5:37 pm
C..
So happy to hear that you are still doing well!!!
I have elevated ANA Titer (and DsDna) .. which may suggest Lupus/ or something else Autoimmune???.. I just had an appt. with my GP .. ran all Bloodwork again.. will see what they come out at?? He said it could all go away.. get worse.. stay the same… I could have guessed one of the 3???
I beleive that the Past infection part of the Parvo test… is normal.. to have, mine is 5.14 IGG does it show the # on yours.. as we have had the past infection, which by this the Dr.s seem to think in my opinion that we should not have any problems/ not the case for me?? My IGM is .13?? When I was diagnosed it was 13.10… meaning it was active in the body then of course!!!
Hope that makes sense..
Hugs, cathy
carol said,
January 24, 2011 at 5:18 am
Hello everyone –
i just stumbled across this website and it very much fits my story. About five years ago i spent 5 days at St Mary’s Hospital in Rochester, MN with excruciating pain in my joints my wrists and hands so swollen they didn’t even look human. After several days of tests and many doctors later they finally diagnosed me with Parvo. I did months of follow up with the Mayo Clinic with tingling and weakness in my hands. After a year or so they finally determined that there was permanent nerve damage and i would probably always have some issues with it. Things went well for a couple of years but now the past two years I am having much numbness in both of my hands and some numbness in my feet as well. If my hands are elevated for a short period of time they will go numb, for sure when i am sleeping i will wake up and they will be numb. Most mornings i can’t even turn off my alarm until i wait for the feeling to come back to them. I also have pain and numbness if i do any strenuous work with my hands; pushing a lawnmower, gardening or anything that requires alot of hand use. I have been contemplating going back to the dr. to see if there is anything i can do to elimainate the numbness but i am not sure i want to start all of the testing, etc again.
serenamuse said,
January 25, 2011 at 4:32 am
Hi Carol,
Glad you found our site, sorry for the reason. It looks like Cathy and Stephanie have given you a warm welcome. That is the great thing about this site. Everyone is here to share and try to help enlighten one another. As I’ve said before my most effective remedy has been eating a high nutrition diet – vegan, lots of raw fruit and veg, whole grains, nuts, legumes. I’ve not had a gluten problem, but I sure notice when I eat too much salt. My hands are always so sore and stiff the next day. I too get the shortness of breath, though not as bad now. I also faint more than the average person – I am sure this must have to do with something vascular. I am interested to see what Mayo has to say about that.
Anyhow, good luck and keep us informed on your progress!
Serena
Cathy Meyer said,
January 24, 2011 at 5:45 pm
Hello Carol.. so sorry to hear of another person.. with this dreadful disease!!! You mentioned that you went to the Mayo.. what sort of Dr. treated you??
I have an appt. for the Mayo on March 1st.. I’m very excited… with Dr. Lermen… (Cardioligist) he created the Endopat.. which tests for Inflammation in the Blood vessels.. as that seems to sometimes be the problem with this Parvo.. bug!! Same as a blocked artery.. the blood can not flow… but if tested for blocked artiries.. us Parvo suffers… have perfect artiries… and the Endopat is one of the 2 ways to check for specific.. Inflammtion of the artiries!!! I have had 2 Echo’s.. EKG.. Chest X-ray.. Lung Function test…all perfect. But I still have this horriable shortness of Breath/ exhaustion after going up stairs!!!! It seems to be getting worse.. even when bending down. I notice it also.. scary!!! I’m only 37.. not 95!!!!
I;m very curiuos to know more… do you know what your blood work was.. is.. at ANA Titers… DS DNA?? Do you have any of that info??
My hands and feet have yet to totally go numb (except when sleeping) example when… sitting in a recliner with my Feet up.. I have to ease into walking when getting up!!!!! Or even sitting at the computer.. or I really notice it in my feet when I sit at our Bar on the tall bar stools!!!!
What kind of meds if any have you taken.. any help?? Do you have any other Problems… achiness… Fatigue..joint pain????
I did a Nerve and Muscle test… 2 x’s all fine…. how did they determine that you permament nerve damage???
Forsure I have trouble with doing to much with my hands as well… stinks!!!!!
So glad that you posted.. more info to bring to the Mayo!!!!!
Do you live in MN.. I do… 1 hour west….of the Cities!!
Best to you… Take care, Cathy
carol said,
January 25, 2011 at 6:08 pm
I saw a neurologist at the Mayo clinic – he was the one that followed me while in the hospital and then did all of my follow up afterwards. I had an electric shock type test done to determine the nerve damage. I had one a couple of months after my hospital stay which showed significant damage which they thought would somewhat improve over the next year and it definately did. At my one year followup the nerves had improved greatly but there was some permanent nerve damage which they said may or may not get better or worse. They said I may experience symptoms similar to carpal tunnel which is what I believe I am experiencing now 😦
the only medication that I took was for the nerve pain and I only took that for a short time after I was released from the hospital – didnt feel like it did a whole lot for me. I would say my issue now is more numbness rather than pain although if I overwork my hands there definately is some pain as well.
I do have some neck pain and other joint pain (knees) but I am not sure if it is related to the virus – it seems like if I work out hard my joints will hurt but that could be just working out hard and just part of life.
I do live in MN – about 2 hours north of Mpls. so we are very fortunate to have the Mayo clinic so close. It is an awesome facility!!
Good luck to you!!
Cathy Meyer said,
January 24, 2011 at 5:48 pm
OH.. I got my Bloodwork back.. my GP called to say that the ANA Titer is no longer Homogenius it is Speckled????? And the DS DNA is still elevated??
So whatever that all means.. he said that is still is pointing in the direction of Lupus???? Oh Great!!!
Cathy
Stephanie said,
January 24, 2011 at 5:52 pm
Hi Carol
I too have terrible hand pain that started shortly after coming down with parvo. I often cannot sleep well because if I sleep on my sides my arms hurt so much as well. I don’t sleep on my back or stomach because I have back problems. Do you have chronic neck pain? I’m wondering if this too is stemming from parvo. I also have tingling in extremities. I’ve had a nerve conductivity test done about 6 months ago and the test came back saying that my nerves were overactive. Strange!
I’ve taken charge of my body lately, I’m at my wits end. I’ve stopped caffeine and alcohol consumption. I’ve changed my diet to no carbs, and have gone gluten free. It’s only been a week so I’ll let everyone know how it goes. So far I still have pain but I feel less on edge, which might help with flare-ups if I’m less stressed.
Thanks for posting.
C. said,
January 25, 2011 at 3:39 pm
Different patterns are associated with a variety of autoimmune disorders. Some of the more common patterns include:
Homogenous (diffuse) – associated with SLE and mixed connective tissue disease
Speckled – associated with SLE, Sjogren’s syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease
Nucleolar – associated with scleroderma and polymyositis
Outline pattern (peripheral) -associated with SLE
An example of a positive result might be: “Positive at 1:320 dilution with a homogenous pattern.”
A positive ANA test result may suggest an autoimmune disease, but further specific testing is required to assist in making a final diagnosis. ANA test results can be positive in people without any known autoimmune disease. While this is not common, the frequency of a false positive ANA result increases as people get older.
Found this interesting site regarding ANA
http://www.suite101.com/content/anatestpatterns-a295
And this regarding Parvo possibly causing Lupus or Autoimmune issues. I think we should email the authors “help” our group! 🙂
http://www.jrheum.org/content/37/11/2430.2.full.pdf+html
Charlotte said,
January 26, 2011 at 7:24 am
So sorry to see Parvo has taken another hostage.
I was told today that my post viral thyroiditis (overactive) is stabilizing, which is consistent with less palpitations and no more weight loss. At least that is a small step in the right direction. We are still monitoring closely in case it ends up underactive as it adjusts.
The pain in my hands, arms, neck, back…and now legs continues. Some days better than others depending on overall health, stress levels, weather etc. I’m starting to think this is probably going to be with me for the rest of my life. Just about come to terms with that, but as with the pain I have good days and bad days.
I wish I could be more strict with my diet like so many of you seem to be, but I don’t seem to have much of an appetite and when I do I eat comfort food rather than stick to an anti-inflammatory diet.
Thank you for all for posting your experiences and findings – it is all good information to discuss with my very patient ‘team’ of doctors.
Cathy said,
February 5, 2011 at 10:23 pm
Hello all..
Thanks “C” for the info on the ANA stuff… frustrating that the Dr.s really have no idea!! Just wait 3 miserable.. feeling awful, months and come back for more blood work??
I have found the Miranda mission site.. it is wonderful!!
They mention a Dr. on there Dr. Melamed in Colorado.. he is a Neuroimmunoligist and is VERY familiar with Parvo and all of the problems that IT DOES create!! I spoke with a gal there at the office and she mentioned that I would need an IGM ran and a Parvo PRC test ran.. if I planned a visit! She also mentioned that they are really starting to find out that this Parvo.. does damage.. Heart/Lungs/Brain!!!
Have any of you on here had a PCR ran.. I don’t believe that I have.. I have to call my Dr. on Monday!!
Take care, Cathy
Stephanie said,
February 22, 2011 at 4:13 pm
Hi Cathy
I called the office of Dr. Melamed and got to talk with a nurse there. I was told to get an IGM and Parvo PCR test as well. I am in the process of getting this started. A positive PCR test indicates the parvovirus has entered into ones cells (DNA). Once I have the results I was told to find an immunologist who focuses on the immune system (not allergy). Dr. Melamed believes that people who suffer from ongoing problems from parovirus have an underlying issue with there immune system. I have been unable to find an immunologist whose main focus is on the immune system on the East coast so if I need to I will go to Colorado to meet with Dr. Melamed. Cathy, were you able to get the PCR test done? I’m interested in your results.
marisa said,
February 14, 2011 at 12:34 am
Went to RA Specialist with RA symptoms. She tested me and my blood work came back for having had parvo within the last three months— this was a year ago. Still suffering from joint flare ups and costochondritis… what type of doctor should I be seeing?!
serenamuse said,
February 14, 2011 at 1:58 am
I found the infectious disease doctors to be the most knowledgeable on Parvo. However, they were still unable to offer other than drugs to try and manage symptoms. None of these were effective for more than a year – in my experience.
Leann said,
February 15, 2011 at 1:50 pm
Hello All.
So sorry to hear of everyone’s plight. It is very frustrating. My 13 year old daughter has been struggling with Chronic Parvo B19 since she was 9. I was curious if anyone knew of a great dr who might be helpful to us in the Cleveland area?
Also, my daughter has a C3 deficiency, which we can only assume was caused by the parvo. Her C3 number was back up, but after 3 sinus infections, and a double ear infection it is really low again. Does anyone else know if their C3 complement number is low?
Cathy said,
February 16, 2011 at 6:39 pm
LeAnn… Been thinking of you daughter since I read the post.. it must be very hard, as a parent to see this happen, it is bad enough as an adult!
I checked back on my Bloodwork.. nothing on C3… I goggeled it and it seems to have to do with C Reactive Protein.. from the little I read!! Sorry I couldn’t help… what have you found that helps your daughter.. is she able to attend school?
Take Care, Cathy
C. said,
February 16, 2011 at 9:02 pm
Good afternoon,
Well- the pain that I thought was gone for good (after 2.5 yrs) returned, unfortunately:( I had finally started exercizing for 3 months & happy as could be. Then Bam. Intense Upper back pain right between my shoulder blades. I found doing a stretch with holding my fingers at the top the kitchen sink and pulling outwards really helps. Have do stretch it out about every hour to not tense up. Its as though I have a runner band pulling my shoulder blades toward the front. I am starting to “come out” of the intense pain and tiredness. Wonder how long I’ll get to enjoy life this time. I feel very sad that I am not able to contribute to the world as much as I could. I am a nurterer and am motivated by doing good & helping others. I feel useless & unable to “get into” anything for fear of when will I begin to feel it’s effects again:( Pray, pray, pray. Accept.
Cathy said,
February 18, 2011 at 10:02 pm
“C”….
What a bummer… 2.5 years.. wow!!!
Parvo sounds like Cancer… I hear my Mom and other cancer survivors.. say every little thing you feel… you wonder is it back… I suppose that will be the story for us as well!! Day to day!!
Take Care, Cathy
Carrie Lutz said,
February 19, 2011 at 2:27 pm
Hi Cathy- I did visit the Miranda Mission site. Yes-lots of great information. Thx! Well from what I read it comes and goes and the pain is “fibromyalgia” ups and downs. However I never embraced that diagnosis because a naturalist Dr. told me fibro is a symptom & I needed to find & treat the cause- which he said was the effects Parvo had on my body. I imagine the breakdown of tissue and attack on joints took a toll and I just need for continue to find help to rebuild. The pain is nothing compared to what I read occurs to others. I am on the “up” again and the sun is out. All 3 of our children went to each of our grandparents-for the long weekend- 1st time ever with everyone gone! This is all I asked the family for my 40th:) Hubby & I plan lots of walks & uninturrupted conversations! Blessings….Hope your day is a good one. Glad we Parvo sufferers have our virtual friends to connect with:)
Cathy said,
February 22, 2011 at 10:15 pm
Hello Stephanie,
Glad you found the Miranda site.. it is great to have online friends that can relate!!!
Well I’m working on getting the PCR test.. my GP.. said that they will run it here.. but the lab will bill it directly to me ( is this because my Dr. is not ordering it??) .. at $450.00… so I called my Ins. and they suggested that my Dr. submit a Pre-Authorization.. to see if Ins will cover.. I actually called my Dr. yesterday to see if he had done that or will?? Waiting to hear? I sure hope so… or I may just get it anyway (can’t afford it)
Have you not had your IGM tested… mine is within limits, now and I told the gal that, at Dr. Melameds office.. and she said the is fine.. it can still be in the Bone marrow… I would say this is why so many Dr.s dismiss Parvo.. that its in our heads.. as the Blood work shows.. it being gone????
Good luck on the immunlogist hunt… I had an awful exp. he was a JERK.. his info stated he was an immunoligist… but really only a Allergist.. i have heard they are far and few between.. in MN anyway!
I have been having alot of pain the last few months.. and the symptoms really seem to fall into place with CFS… scaring me.. I may do whatever i need to … to get to Colorado?
How long have you had Parvo.. I see in a post that you have neck pain.. mine is terriable (since my diagnonis almost 2 yrs ago).. it goes up into the back of my head… ouch.. I know its the Parvo.. I WAS so healthy 2 years ago.. I will get back there!!
Best to you.. I will post on the PCR.. I’m hoping my Dr. calls today or tomorrow!!
Hugs, Cathy
Charlotte said,
February 23, 2011 at 5:06 am
Hi Cathy
I am not sure if I have had PCR tested, I have had so many blood tests I have lost track. I will ask at my next appointment. Are these tests to detect parvo DNA in the blood, or the bone marrow? Or both? What benefit would be gained from getting a positive result? Would they be able to target treatment more effectively? I am still trying to cope with the chronic pain and am struggling to keep a full time job.
Thanks for the info.
Charlotte
Cathy said,
February 22, 2011 at 10:19 pm
Carrie…
I hope that you had a FANTASTIC weekend with your hubby!! 1st time with no kids.. how old…..are your kids???
Happy 40th… hope your still up!!
So true about virtual friends… I don’t know where I would be without these sites!!!
Cathy
Carrie said,
February 28, 2011 at 6:03 pm
Hi Cathy-
we did alot of nothing which was great! They are 12 and under. We have been without on or 2 here and there- but always someone here. Never all gone at once. It was nice having them back- but awesome getting husband time:) Let us all know how the Mayo Clinic goes & of any new US treatments for the virus- as I have no idea how much $ Immunovir would be (assuming its not covered by ins and only available in Ireland or Canada). Like all, we need to rid the virus, not cover it up w/ pain meds and eventually go nuts from brain issues it causes or all the other things it causes! 😦 Hope there is some Doc there who wants to take this on further! Godspeed!
Cathy said,
February 22, 2011 at 10:23 pm
Stephanie…
I wanted to ask.. is the Gluten free diet helping you.. if your still on it.. I find it very difficult to know what is helping or hurting… so nice to hear.. whats working for others..
Thanks, Cathy
Stephanie said,
February 25, 2011 at 11:48 pm
Hi Cathy
I did do the Gluten free diet for 2 weeks, I also stopped drinking coffee and wine. I felt much better after the first 5 days. I had lots of energy, but my joints still bothered me. I went for some blood work yesterday for I am having sensitivities to pasta and have been feeling lots of fatigue. Maybe I have celiac disease? My mother has it. It would be interesting to find out if I have this…would this mean that my underlying immune system issue could be celiac and that’s why the parvo has effected me so much? I’ll let you know the results when I find out.
I do have terrible neck pain off and on…I also have low back pain. I’ve always had issues with my back and I think the parvo just makes it worse.
I have had my IGM tested and am showing no signs of infection anymore. I got parvovirus August of 2010. I’ve had about 10 or so flare-ups since and the flares seem to get worse over time. I am having a flare-up right now, the worst part about this flare is the dizziness and all over body aches. I hope it doesn’t last too long.
Stephanie
Cathy said,
February 23, 2011 at 2:12 pm
Charlotte..
Hello…. yes Dr. Melamed (in Colorado) .. would then be able to target treatment… say.. IVIG for instance. ( and he will do it) .. that would hopefully get to the root of the problem (down to the cells/Bone marrow) and get rid of the Parvo that has infected our bodies??? Rather then Steroids.. and treatments that only mast the problems!! This is how I am understanding it!
Please let me know if you have had the test… for some reason I doubt it… my Dr. hasn’t called back.. he seems to not want anything to do with it??
I’m blessed that I work part-time.. I really do not think I could do Full now.. not with how I have been feeling the last few months!!!
Hugs.. Cathy
Cathy said,
February 28, 2011 at 1:23 pm
My Dr. called and has sent in a Pre Artho for the PCR test.. maybe the Mayo will run it???
Best to all, Cathy
Charlotte said,
March 1, 2011 at 6:57 am
Cathy
Do you have a contact address for Dr Melamed? I would like to write to him and see if he has any advice for me. I am struggling a lot at the moment and about to give up and go back to part time working. 😦
Gwen Dernis said,
February 27, 2011 at 2:39 pm
I recently contracted ParvoB19 and had the fortune of going immediatley to a Rheumotologist who tested for and diagnosed it. When my sypmtoms were worse 8 weeks later, he sent me to the head of immunology at U. of Miami. Dr. Nancy Klimas is an angel. Not only does she know in detail about the virus and the link to CFS, but she is able to pinpoint the issue and treat it. She started my Immunovir, which I have to get from Canada. I already take a lot of vitamins, but she told me to up them to a therapuetic level. 4000 iu Omega 3, 5000 iu Vit D, CoQ10(ubiquinal), B12 ( i need shots since the virus caused an auto immune called pernicious anemia).
Finally, she is advocating, along with my Rheumotologist and Hemotologist, that I get IVIG. I will know more in a month after the many lab tests she is running are available. She has her own lab at U. of Miami and runs extremely specialized tests in this area. She takes patients nationwide, I was just lucky that she was in my backyard and that my diagnosing doctor knew of her. She runs the Chronic Fatigue Center. I hope this helps someone…
C. said,
February 28, 2011 at 6:12 pm
Thx Gwen,
Very informative!! Sorry, In advance for so many questions! How much is Immunovir? Are you the 1st to take it for Parvo? How long does it last? I’m assuming since it is supposed to help kill the virus it covers/can be used for all sypmtoms related to Parvo, right? (I do not have CFS). Lastly, do you have a recommended brand for the vitamins?
Good luck. Looking forward to hearing about your progress!
Cathy said,
February 28, 2011 at 1:21 pm
Gwen…
Wow you are very lucky..I actually have heard of Dr. Nancy Klimas.. somewhere in all my reading…keep us posted…
what are the tests that they are running to see if you are a candidate for IVIG??
I’m actaully off to the Mayo today (3 hour drive).. for an appt in the AM.. they want me there 8:30. for a bunch of tests with Dr. Lerman (Cardioligist) hopefully they will use the Endopat?? After reading your post.. I’m very hopeful I can be seen by there immounology Depart… seeing I have packed a bag to stay until who knows when,they said to plan for 2 days..?? I have printed your post to bring.. along with my 3 other folders of info!
Best to All.. Cathy
Stephanie said,
February 28, 2011 at 4:10 pm
Cathy
Good luck with your appointment today. Best of luck! 🙂
Stephanie
C. said,
February 28, 2011 at 6:46 pm
Has anyone tried garlic tabs (with allicon)/and or steeping garlic tea as a remedy for getting rid of parvo? I’ve read that mycoplasma plays a big part in it all.
Maybe there could be an “Immune system boosting foods” tab and “recipes” tab:) ??
Cathy said,
March 1, 2011 at 10:38 pm
Charolette,
Hello.. I hope that you are having a better day!! Dr. Melamed.. in Colorado..I do not have that info with me.. goggle I think it will come up.. in Centennial Colorado… or go to Mirandamissions.com its there …phone..etc!!!
I went to the Mayo today.. Echo/EKG.Chest X-ray.. Met Dr. Lerman.. loved him…. I will be doing the Endopat in the morning with a Exercise Sestambi Scan.. I’m very excited! And then next week I come back to the CFS/ Fibro/Internal medicine departs…
Best to all..Cathy
Cathy said,
March 4, 2011 at 4:53 pm
Hello.. a little update…from the Mayo…
I’m so happy to say that from a Cardiovascular standpoint (quoted from the Cardiologist..Dr. Lerman) .. everything is great!! I guess that i have to trust his opinion!!!
They did every test under the sun…. an EKG/ Echo/Chest X-Ray/exercise stress test and an Endopat ( checks for Inflammation in the Blood vessels)
It would have been nice for him to have said.. oh this is the problem.. and now I can fix it.. not the case, but this is actually better news… my heart is VERY healthy all of the vessels coming and going are healthy, so when I get short of breath…it is not my heart!!!
So I get to go back next week… again and they are sending me to the Internal Medicine Depart. as there is still the problem of elevated Blood work.. looking like a possible diagnosis of Lupus, or whatever other Autoimmune Disease it could be???? I will push to also be seen by Immunology??
So time will tell.. a relief no doubt!!!!
Hope everyone is good…Cathy
Charlotte said,
March 4, 2011 at 5:05 pm
That is good news, I’m very happy for you. But I know exactly what you mean – hearing ‘everything looks fine’ is always a relief, but then an upset that it means you are back to the drawing board with no treatment or diagnosis. I had the same thing when I had my consultation with ENT this week. After looking through an endoscope he said the constant pain in my throat is not due to any lumps, bumps or other worries; but my throat is very red and irritated which he puts down to the parvovirus. It has been almost a year now, and still I am getting told ‘these things take time to work out of the system, keep battling on’.
I am still waiting for my follow up appointment with my internal medicine Dr, who should have the results of my halter monitor, blood work and echo. My resting heart rate is constantly over 100, and with very gentle exercise on a cross trainer it shoots up to 190 very quickly. Before the parvo I was a fit, healthy, active person.
C. said,
March 4, 2011 at 7:50 pm
Cathy, Good news.. More investigations to figure things out though. what about lungs/ and or asthma brough on by parvo? I have a call in to my pcp to see an infectious disease specialist. I tried to get into immunology- but all of them mostly deal w/allergies and no one w/ exp w/ parvo. therefore the inf. disease quest
Charlotte said,
March 8, 2011 at 4:22 am
Hi all
I have hit a bit of a wall today. I finally followed up with my Internal Medicine Dr and he didn’t really have any news that I didn’t already know. Holter monitor showed heart rate is elevated but no abnormal rhythms. Resting HR over 100, up to 190 with exertion. Thyroid level back to normal and other blood work improved. But I haven’t improved, if anything I am more fatigued than ever and in a lot of pain. I suggested CFS. He said it is possible but he isn’t an expert in it.
I have a cardio stress test next week and a lung function test…then back to see him again. I left some of the research I have found on chronic parvo infection with his nurse. Hopefully he will read it.
I’m concerned that sooner or later they are going to run out of tests to do and will just say ‘you will get over it soon, it’s just a virus’. Why is so little known about this, when there are so many people suffering?
Cathy said,
March 8, 2011 at 1:37 pm
Hello Charlotte…
So frustrating I know…things are improving.. but why do you still feel terriable.right?? I actually have been feeling bad lately.. I really feel as though it is turning into CFS…?? I’m seriously considering heading to Colorado.. or Miami to see Dr. Nancy (per Gwen and researching her on the internent) … read much about her?? After reading a bunch of info yesterday… I still want to try the IVIG.. that is my next goal???
Good luck with your dr. visits..I;m going tomorrow to give blood so they can run the Parvo PCR test.. my Dr. sent a Pre Athour. and Ins will cover.. this is the test the gal at Dr. Melemeds office suggested.. I also read LOTS about it as well.. ??
Take Care… Cathy
Charlotte said,
March 9, 2011 at 3:38 am
Good luck tomorrow Cathy.
I received a letter from Dr Melameds office and his nurse said he is very familiar with parvo and the symptoms that I described. He would be happy to have a phone consultation with me if I can get my medical records to him. There has been so many tests done over the last year, that is going to be quite a task. I’m not sure what the cost of all this is going to be, or whether my insurance in Canada will cover it…I doubt it.
I have my pulmonary function test tomorrow and cardiac stress test next week, so will wait for the results of all this and then discuss consulting with Dr Melamed with my Dr here in Canada and she what he thinks.
Thank you so much for the contacts!
Cathy said,
March 9, 2011 at 3:57 am
Charlotte…. Funny you mention Dr. Melemed… I just got an email from.. Monica ( is that the nurse you refer too).. and a Phone Consult is $150.. I may do that! Cheaper then getting to Colorado! I doubt if my Ins. would cover… but for $150.. I think I would pay that…. the $ of my Mayo visit will be waayyy beyond that forsure!!
The PRC parvo test.. I just have the blood drawn for tomorrow.. then it is sent out if I understand it correctly???
Best to you.. I had the Pulmanary done in the fall.. was great!!!
Hugs.. Cathy
Cathy said,
March 9, 2011 at 4:03 am
Charolette..
I was one a website today… “learning to live with CFS” the lady in the website is Sue Jackson.. her 2 kids have CFS.. it talks about the anearobic thresholds in CFS.. maybe you have read all about it.. just thought of it.. when reading your post???
Hugs.. Cathy
Charlotte said,
March 9, 2011 at 4:06 am
Yes – from Monica. Sounds like the same email. I think I will do it too, but not sure how I go about getting my medical history over to him? I will definitely wait for the results of the pulmonary and cardiac work. Do you mean your pulmonary test results were good? I think I am going to have a hard time, I am always short of breath.
I have not read much about CFS really, only the articles written by Dr Kerr relating it to Parvovirus. I will read, thanks again.
Cathy said,
March 9, 2011 at 4:21 am
Yes the Pulmonary test was fine…. boy I re-read your post up a few.. on your heart rate level problems.. sure seems to be similar to the gal in that website (Sue)
My GP sent all of my Paperwork to the Mayo.. I would think that they could send it to Dr. Melameds??? I will also wait for the PCR result and then go from there!!
Best to you!!! Night.. Cathy
Charlotte said,
March 16, 2011 at 12:13 am
So I had my treadmill stress test today and it didn’t go very well. I only managed just over 6 minutes and didn’t get past a brisk walk before I had to stop. HR before starting was 110 and got to 170 after 5 minutes. Blood pressure didn’t increase at all, which is abnormal. Cardiologist suggested the virus has damaged the heart muscles but I will have to wait for the official results to be sent to my Dr. I will also get them sent to Dr Melamed to see if he has any answers.
C. said,
March 16, 2011 at 1:18 pm
Cathy- Saw this article- not sure if they are looking for people to continue their study but it shows promising research in regrowing damaged heart tissue/muscles. The Dr.’s names are listed in case you want to contact them to volunteer for any studies or obtain more info. I hope they can help:)
http://www.utsouthwestern.edu/utsw/cda/dept353744/files/629319.html
DALLAS – Feb. 24, 2011 – In a promising science-fiction-meets-real-world juxtaposition, researchers at UT Southwestern Medical Center have discovered that the mammalian newborn heart can heal itself completely.
Researchers, working with mice, found that a portion of the heart removed during the first week after birth grew back wholly and correctly – as if nothing had happened.
Researchers led by (from left) Drs. Eric Olson, Hesham Sadek and Enzo Porrello found in an animal study that newborn heart tissue was able to repair itself within weeks of being damaged.
“This is an important step in our search for a cure for heart disease, the No. 1 killer in the developed world,” said Dr. Hesham Sadek, assistant professor of internal medicine and senior author of the study available online in the Feb. 25 issue of Science. “We found that the heart of newborn mammals can fix itself; it just forgets how as it gets older. The challenge now is to find a way to remind the adult heart how to fix itself again.”
Previous research has demonstrated that the lower organisms, like some fish and amphibians, that can regrow fins and tails, can also regrow portions of their hearts after injury.
“In contrast, the hearts of adult mammals lack the ability to regrow lost or damaged tissue, and as a result, when the heart is injured, for example after a heart attack, it gets weaker, which eventually leads to heart failure,” Dr. Sadek said.
The researchers found that within three weeks of removing 15 percent of the newborn mouse heart, the heart was able to completely grow back the lost tissue, and as a result looked and functioned just like a normal heart. The researchers believe that uninjured beating heart cells, called cardiomyocytes, are a major source of the new cells. They stop beating long enough to divide and provide the heart with fresh cardiomyocytes.
Dr. Eric Olson, chairman of molecular biology and co-senior author of the study, said that this work is fascinating.
“The inability of the adult heart to regenerate following injury represents a major barrier in cardiovascular medicine,” said Dr. Olson, who directs the Nancy B. and Jake L. Hamon Center for Basic Research in Cancer and the Nearburg Family Center for Basic and Clinical Research in Pediatric Oncology. “This work demonstrates that cardiac regeneration is possible in the mammalian heart during a window of time after birth, but this regenerative ability is then lost. Armed with this knowledge, we can next work to discover methods to reawaken cardiac regeneration in adulthood.”
The next step, the researchers said, is to study this brief window when the heart is still capable of regeneration, and to find out how, and why, the heart “turns off” this remarkable ability to regenerate as it grows older.
Other UT Southwestern researchers involved in the study were Dr. Enzo Porrello, postdoctoral research fellow in molecular biology and the paper’s lead author; Ahmed Mahmoud, graduate research assistant in internal medicine; Emma Simpson, research assistant in pathology; Dr. Joseph Hill, chief of cardiology; and Dr. James Richardson, professor of pathology and molecular biology.
The study was funded by the National Health and Medical Research Council, the National Heart Foundation of Australia and the American Heart Association.
Cathy said,
March 16, 2011 at 3:38 pm
C…. interesting article… forsure.. will have to check into the that!!
Charolette.. wow do you think that you had any heart problems before the Parvo infection?? What about the Pulmanary test?? Waiting??
Well I have a negative PRC result.. so again good news.. but then again.. no answers.. still may head to Colorado/ or do a phone consult with Dr. Melamed?? Not sure??
I never went back to the Mayo.. as my Ins. would bill Internal medicine at the Mayo as out of network.. BUMMER!!
Best to all… Cathy
Charlotte said,
March 16, 2011 at 3:59 pm
Cathy,
I’m not sure, I don’t think so. I have always been fit and healthy to my knowledge. My brother has a heart defect, but I was told it was a one-off thing that was not hereditary. My grand-parents died relatively young (70s) from heart problems (stroke, heart attack etc). I hope this is not where these tests are heading. I have read a lot of papers about parvovirus causing damage to the heart cells and inflammation of the muscles (myocarditis?). I am waiting for the official results from both this and the pulmonary test. The technician said my pulmonary looked normal though, it’s just the treadmill test I am concerned about. Back to the waiting game that we all know so well…
Cathy said,
March 16, 2011 at 4:20 pm
Charlotte.. wow.. when did you get Parvo.. last spring?? This %$@&* disease.. I think that it is VERY underestimated… and it sure seems to hit healthy active people…weird!! I have uddles of paperwork also on Parvo related heart problems.. like you say myocaditis.. etc?
Please post your results… best to you!! Hopefully you are catching it early!! Your pulmanary looked good.. so what would be causing the problems with the Stress test??? Inflam of the Blood vessels????
Cathy
Cathy said,
March 16, 2011 at 3:41 pm
This is a message from the Miranda site. on a negative Parvo PCR.. from a wonderful gal .. she explains it so well!!!
Best to all.. Cathy
Cathy,
The good news is that the DNA of the Parvo Virus is no longer in your system, but that doesn’t mean your immune system isn’t still attacking tissues and cells that were affected by it. It kind of leaves an imprint (like a footprint) that can last for a very long time. Did you get IgM and IgG titers also? By the time I was tested my PCR and IgM levels were back to normal but my IgG was very elevated. But the bad news, like you say, is that you can’t qualify for IVIG unless there are other issues with your immune system like low serum complement or T-cell deficiencies.
Charlotte said,
April 19, 2011 at 12:19 am
Constance,
Sorry to hear you are also suffering from Parvovirus. I am just about 12 months on from initial infection and still having lengthy flare ups and occasional good days. Low doses of Elavil before bed help with sleeping through the pain and reduce muscle pains and aches the next day. I have a phone consultation with a doctor in Colorado at the end of the month and I am hoping he might have some answers. It is important to rest when you need to, but also try and keep as active/mobile as you can – the key is finding the right balance. Warm baths with epsom salt and baking soda help my pain levels, but I can’t have them too hot as I have been having heart problems with this virus too. Massage also helps – I especially find Chinese trigger point therapy helpful. Try and eat a good ‘anti-inflammatory’ diet, drink lots of water and perhaps take a multivitamin.
Charlotte
Cathy said,
April 19, 2011 at 1:35 am
Charlotte,
How are you… hopefully feeling better!
I’m very anxious to hear how your phone consult goes!
I’m heading back to the Mayo on Friday to Reumatoligy and maybe Immunolgy…. so I shall see??
Did see a Dr. in Internal medicine at the Mayo a few weeks ago.. asked a bunch of questions and said that I may have Fibro.. then I asked about my elevated blood work.. that is when she referred me to Reum…. she recommended meds.. I haven;t taken any yet.. I really do not want to.. but I have been feeling pretty bad.. so I will see what the Mayo says!
Best to all.. Cathy
Charlotte said,
April 19, 2011 at 1:41 am
I have had a good week, following on from two terrible weeks with chest pain, fatigue and tachycardia. Thyroid levels continue to improve and no other abnormal tests other than HR. I am going away for the Easter weekend, and am looking forward to talking to Dr Melamed when I get back. If you are battling this without any meds I think you are doing really well. Good luck with everything.
C
Cathy said,
April 19, 2011 at 2:15 am
I hope that you have a Great Easter!!
I have progressively been getting worse since Christmas (bad cold and then in Jan. the Flu?) I have been taking Vicadin on the bad days.. and loads of Motrin.. I wish that I didn’t have to take either.. but if things do not improve after my Mayo visit I need to do something.. I was hopeful with spring things would improve… spring is just not coming to MN.. so???
I had to look up Elavil and here that is Amatriptaline (what my GP recommended for me .. if needed after the Mayo?? Any side effects??
Which I find the hardest part of this.. I just cannot pinpoint what makes my symptoms.. worse.. so many variables in a day???
Please be sure to let me know of your phone consult!!!
Hugs and Take Care. glad to hear that you had a good week!!
Cathy my email is jeffncathy12@yahoo.com if you ever want to email me!!
stephanie said,
April 21, 2011 at 4:41 am
Its flare up time again–my son is 3yrs old i was diagnosed with parvo while pregnant-Everytime I think this has got to be the last flare–Now i think its jacking with my hormones-maybe thyroid or something–but def something going on again–Dr says she will test on my 3rd day of cycle-umm thats like 20 days away–I have 3 kids and can NOT stay in bed all the time–I have not been tested for the parvo again since my 2 initial tests–when i mention to DR’s it feels like it is the parvo again–they tell me well I dont think its possible but i have not done alot of research on it..I so need a DR in the HOUSTON area who KNOWS about this and believes in recurring parvo
Cathy said,
April 28, 2011 at 12:07 am
Well I went to the Mayo last week and saw a reumatoligist there.. she was wonderful.. but unfortunaely.. no answers to my strange symptoms and Bloodwork?? I mentioned seeing someone in the immunoligy depart.. she said that she would check with them, but was not sure what other tests that they could do?? IVIG.. seemed to not be an option with her??
So is Colorado and Dr. Melemed in the future???
I go back tomorrow (to the Mayo) to see a Neroligist.. as I have so much.. tingling/ weird muscle spazms.. ear pain.. also eye pain ( behind the eye.. only sometimes within the last 2-3 months??) Back of my head pain??
I wish you all the best.. Cathy
Cathy said,
April 30, 2011 at 11:49 pm
Well the Mayo.. did a MRI (as stated by the Neurologist only 1% find something).. so al is good!!
Otherwise not a helpful trip.. she mentioned amatriptaline??
Time will tell… things are not so good.. so I may do that! Or talk to or go see Dr. Melamed in Colorado!
Take care, Cathy
LeeLee said,
May 1, 2011 at 2:01 pm
hi cathy,
i take amatriptaline for sleeping. the doctor is working my up to 100 mg. works well with me. i also had the ivig done in 2009…it did not help me.
i am now off to see a neurologist. i do hope this doctor has an answer.
hope all works well…
take care
leelee
c. said,
May 2, 2011 at 1:36 am
Cathy & LeeLee,
I used to take Nature’s Way Valarian Root (under $10) about 2 hours before bedtime when I was having sleep issues. It kept me asleep the whole night soundly and helped me doze off faster.
Regarding energy levels- I heard B-12 shots sometimes help people. But I got 2 and only the 1st one helped energy levels. Sleep is so important with this virus. The less soundly you sleep, and the less sleep you get- the worse the pain. At least for me. I have learned that even though I may miss fun events sometimes- sleep is more important!
After 2 1/2 years of on again/off again I am in month 3 of barely any muscle joint pain. I have had this pain free time period 1 other time and it lasted only a month or so I think… I have not had any sleep issues in about a year. Get your sleep.. listen to your body:)
Cathy said,
May 2, 2011 at 2:37 am
LeeLee .. you had the IVIG done and it did not help you??
How far into the parvo where you???
Did you have elevated IGG’s/IGM’s???
What was the dose and timeframe for the IVIG??
Who ordered it for you??
Do you have other medical problems??
Listen to me.. 20 questions!!
C .. do you take any meds now??? To sleep.. pain.. etc???
Thanks for all…. Cathy
c. said,
May 2, 2011 at 1:32 pm
Cathy- I only only taken tylenol now and then for muscle pain, Valarian root tabs for sleep aid and epsom salt/bath therapy. I saw a chiropractor and got trigger point therapy also and found a massage school where students work on you at about half the price. I suggest finding a chiro who has a degree from the “Palmer College”- https://www.palmer.edu/Palmer/Pages/Form.aspx?id=137. After 5 months of initially not getting over the joint pain, I got a shot of cortisone (steroid) in my hip. Only the 1st one helped- but tremendously, however the effects lasted only about a month. The joint pain came back. However, not as intense. I am really scared of side effects of other meds and have opted to do things this way- so far:)
LeeLee said,
May 2, 2011 at 11:28 pm
dear cathy,
as per the doctors in new york state, they diagnosed me with the most severe case of parvo they had ever seen.
i am going to try to answer some of your questions. i was six months into having parvo when my family practioner ordered an ivig. it was five days worth of discomfort. they had to change my port every day as my veins kept collapsing.
my igg was 5.1 and igm was 5.2.
I have no prior medical problems. i was healthy, worked full-time and then some exercised, walked and lived life to the fullest. i was happy. now, after contracting this virus and RSD aka relex sympothetic dystrophy, i am not happy. i cry alot, and totally dislike being dependent on people.
i take quite a few meds now. i take 100mg of amitriptaline for sleep, 100 mg of zoloft for depression, 10 mg of oxycontin for pain, 1mg of folic acid for hair loss, 800 mg of skelaxin for back pain, volaren gel for instant pain relief, prevacid to protect my stomach and collace to “go”.
my husband and i just purchased a thermospa. the water therapy seems to work. i only wish i could live in the water. i would then be pain free. but in reality, that is not the case so i go in as much as i can to get as much relief as i can.
i have seen some people write in about trying the vegan diet. maybe i will give that a shot. i will try just about anything at this point.
i hope i answered most of your questions.
talk to you soon…leelee
Charlotte said,
May 3, 2011 at 12:03 am
Leelee
That sounds awful. I am now exactly 12 months into parvo and am getting by on 20 / 40 mg Apitriptiline depending on whether I am having a good week or bad week. It tends to swing a lot and this week looks like it might be a bad one, after three good weeks.
I try and have epsom/baking soda baths as often as I can, and get massages. I have spoken to Dr Melamed in Colorado and he is ordering some tests to determine the state of my immune system and whether IVIG will be of any help to me. I have just found out that my insurance will not cover the consultation wiht him (out of country)…so I pray that they will cover the IVIG – if that is deemed appropriate.
I completely sympathise with your situation…I too was fit and healthy prior to this. Scuba diving, running, horse riding, skydiving…and now I consider getting out of bed an achievement. 😦
Charlotte
LeeLee said,
May 4, 2011 at 11:11 am
dear charlotte,
i am so sorry to hear you are not well.
before i contracted this virus, i have never heard of it. i always thought parvo was something a dog could get. when the doctors told me what i had, i was more upset for my two dogs, thinking they were sick to. thank goodness they are fine and it wasnt caused by them.
i have worked as a pre-school teacher for nine years. the teachers were all aware of the virus, fifth disease, a.k.a. slapped cheek syndrome. the teachers were all told that if a child experienced coughing, aching, stuffiness etc., the parent should be called immediately as this could be a sign of fith disease. although, unless a blood test is taken, you never know when the child may have it until a lacey red rash appears on the body. by thia time, the child is no loger contageous. unfortuneately, the teachers were never told that adults could also get this virus in a different form from a child.
i have been told by doctors that i am totally disabled. every joint hurts and every muscle hurts. i am not able to drive anymore as my reflexes are not fast, i cannot turn my neck and i have use of only one arm. i have to depend on family and friends to help me around the house such as cooking, cleaning, and helping me with my adl’s.
i have noticed that when i am in the hot tub, the pain weakens rapidly. unfortuneately, when i come of of the water, i have the pain all over again.
my insurance did not want to cover my ivig either. your doctor has to prove to the insurance company that it is medically necessary for you to have this treatment.
i do hope everything works out for you. please keep me posted on the ivig’s.
talk to you soon…leelee
Cathy said,
May 13, 2011 at 1:26 am
Hello Lee-Lee…. how are you? Thanks for the info… I may start the Amatriptaline??? I too am trying to get a phone consult with Dr. Melamed in Colorado??? Seeing the Mayo believes that all is good.. per all of the testing anyway.. no one could explain why all of the eleveted bloodwork and my strange sytmpoms???
What made your Parvo the Worst case that they had seen.. I just wondered.. by the IGG/IGM??
Do you think that the IVIG made you worse.. or just did nothing???
Any news from the Neurologist??
Take care.. Cathy
Linda said,
May 11, 2011 at 3:03 am
Hello Fellow Sufferers!
I was just given the confirmation TODAY that I am positive for Parvovirus! I’ve been sick for two weeks today. Last weekend the joint pain and swelling came on within 2 hours and it was the most excrutiating pain next to when I had salmenella poisioning years ago. I just cried all day due to the pain. I was paralyzed withing 12 hours of the acute attack and spent the night at the ER. As soon as I got the steriods I felt immediately better. Now that the steriods are done, my pain is coming back. I also tested positive for Lyme in the intial titer but negative on the Western Block. My gf who has had Lyme and Bartonella for 4 years sent me an article that showed that Parvovirus can alter the test results of the Western Block.
So here I am knowing I have Parvovirus and maybe Lyme. Lyme is such a complicated disease that affects everything, I’m wondering if Parvovirus combined with Lyme is what is making all of you suffer for so long when this is supposed to be a virus that is gone in a few weeks.
I’m hoping I don’t have the chronic problems like you all express (hope and pray actually) but with my luck I have a feeling you’ll see me here often! Does anyone have any experience with fighting both Parvovirus and Lyme or another tick borne illness?
For some reason I’m seeing years of specialist in my future.
Also, my first five days of being sick was a very acute high fever with terrible muscle and body pains. That went on for 4 days… then a day feeling OK… then BAM!!! In 2 hours I got the extreme joint pain and swelling until I was paralyzed and couldn’t move anything!
After the steriods and antibiotics (for Lyme) I felt better within hours… but the fatigue and brain fog is sooooo bad that I haven’t left the couch in 2 weeks now… I get a little burst of energy around the dinner hours and try to do what I can. I’m a widowed mom with a 12 year old and rambuncious puppy that doesn’t understand I’m sick… and I’m all alone! Very frustrating!
When I read about all of this, I’m so scared and worried that this will be here for a very long time and I can’t manage my life being sick like this and widowed… how am I supposed to do this alone?
Any help or advice???
Thanks!
Linda
Cathy said,
May 13, 2011 at 1:36 am
Linda…..Parvo and Lymes… yicks!!!!!!!! I hope that you do not get any thing chronic either.. I would not wish this on my worst enemy!! Praying for your return to wellness
I have been tested MANY times for Lymes (always negative) … also did some homepathic ( little tablets under the tongue) she thought that if I had Lymes that would improve my symptoms.. no such luck.. so I belive that I do not have Lymes??? But then the testing is not 100% either????
I wish I had answers.. all I can say is trust your symptoms!!!
Take care..Cathy
Cathy said,
May 13, 2011 at 1:38 am
Oh… I forgot (SURPRISE) the brain fog is bad for me.. it really is pretty scary actually!! Take care!!! Hugs… Cathy
Linda said,
May 13, 2011 at 11:25 am
Cathy,
Read what I posted above… you might want to see Lyme specialist or at least an infectious disease Dr. if you haven’t already. I’m not sure how a homopatheic remedy would work for Lyme. It’s hard to kick with the strongest antibiotics.
Maybe you should recheck… Do your research… you’ll see how much these symptoms are the same as Lyme or another tick borne virus.
Good Luck!
Linda
LeeLee said,
May 13, 2011 at 10:52 am
i can relate on how frusterating it is to not be able to do what you used to do. i am praying that you do get better quickly so you can take care of your puppy. my family and friends have been helping me through all this. i hope you are able to do the same.
i am learning that parvo is quite common. although, many people i have seen who were diagnosed as having parvo got better within 3 weeks and have been working and doing their normal routine.
unfortuneately, i was not so lucky to fit into that catagory. i have had parvo for over 2 years. it has been quite painful.
as you, i was also diagnosed with positive lyme disease and positive rheumatoid arthritis with severe parvo. the doctors new something had to be ruled out. i did have the western block done and it was negative. as a precautionary, the doctors put me on a lyme antibiotic for quite sometime with no improvement of symptoms. i was also on 80 mg of prednisone, (steroid) for quite sometime, which did not improve anything. I had an ivig done for five days at the hospital, (with of course the same answer), no improvement.
i am definitely going to look into the lyme disease again.
what i do enjoy about this blog is you learn something new everyday. whether it’s something to help you or just make you feel better about yourself. just remember, you are not alone. we are all here to help in any way we can.
take care…leelee
Linda said,
May 13, 2011 at 11:23 am
Hi Lee Lee and Cathy!
Thanks for your responses and well wishes. I’ve felt a little better the past 2 days so I’m really hoping I’ll be one of the lucky ones, but the Lyme does have me concerned especially since Lee Lee is in the same shoes. Your Western Blot came out negative too? I’ve learned so much over the years from my girlfriend who’s had Lyme and Bartonella for 4 years. She sent me an article that studied Parvovirus and the Western Blot. It indicated that there were alot of false negatives with the Western Blot when there is an active Parvovirus. Google it… you might find it. If I can I’ll attach later here.
She’s posted my problems on her Lyme boards and so many people have suggested that Lyme with Parvo can cause long lasting effects. Both are viruses that can “reflare” under times of stress and low immunity.
Lyme treatment is very very tricky. She’s been getting treated with many different antibiotics for over 4 years! So Lee Lee go find a Lyme Literate Dr. and get tested! There’s 2 labs that have super sensitive procedures for testing. A lyme literate Dr. would know more. It’s called IGeneX I think.. .and it’s in California.
I go back on wednesday to retest for Lyme and 2 other tick borne illnesses. You have to remember it’s NOT just Lyme. There’s soooo many others and alot of ticks carry more than one virus. Also, I live in a Lyme epidemic area in MD. So that’s a huge factor too.
Wish me luck and I’ll keep all of you here in my prayers!
Thanks,
Linda
Charlotte said,
May 14, 2011 at 1:45 am
Hi all,
I have had an interesting couple of months. I had a few good weeks in early April, then got a bad throat infection mid April. Although I was bed ridden for most of the week, strangely enough the parvo pains were not really a problem at that time. After I got over the throat infection I was still parvo-pain free and managed to enjoy a bit of a holiday. Then, this past week has been horrendous. Back to severe muscle pain, joint pain, fatigue etc. My immunologist has run a lot of tests recently and they are just starting to come back in. So far IGG (subclass 3), IGA, Vitamin D and B12 are deficient. I have started today on 2000UI Vit D and 1200 B12. I see from earlier posts others have had similar deficiencies with parvo.
I am hoping these results (and the PCR outstanding) will qualify me for IVIG, and that the supplements will help.
I am also being referred to a physiotherapist to work with my muscles and joints to try and build some strength in them again – I will let you know how it goes.
C x
Cathy said,
June 22, 2011 at 1:31 am
How is everyone doing..Summer is flying by ….
I was hoping to have a Phone Consult with Dr. Melamed in Colorado but didn’t work out, BUMMER!!
Started taking Amatriptaline, not sure about, to sleep, groggy, so? I was taking B12…and I didn’t go well….stomach cramps/ loose stools??? So I stopped and it all cleared up… BUMMER!!!
Still good and bad days.. achy, weak, tired all that fun stuff…
Hope this finds some improvement to all!!!
Cathy
Linda Turner said,
June 22, 2011 at 2:57 am
Hello All! It’s been exactly 2 months since I started my first day of fever with Parvovirus. Two months later, the top of my right foot still hurts every single day. And… the funniest thing, is that this virus affects a different joint (or two) every day… each day it moves to some place new. The pain is NOTHING like it was at first… but still achey… like arthritis. I’m not nearly as tired as before… but I haven’t been back to exercising yet… unfortunately. Did anyone have continual foot pain? I’ve struggled with heal spurs for the past 20 years off and on. But this is a different pain, it’s on the top of my foot and into my toes. Of course my podiatrist has no idea about Parvo… so he’s worthless with helping me with my feet or finding a connection with this… anyway, drop me a line if you have similar experience…
Linda
serenamuse said,
June 22, 2011 at 5:00 am
Your experience with the joint issues – different joints every day – is quite similar to what I experience. The weirdest was when it moved to my jaw – could hardly eat or open my mouth. It went away in a day or two. There is so much they just don’t know.
Charlotte said,
June 22, 2011 at 5:03 am
Hi Linda.
Sorry to hear you are struggling with this too. Yes, I know exactly what you mean. I get it on the top of my feet and on the back of my hands. It is like no other pain I have felt before. Burning but not hot, painful but not swollen, throbbing, stinging. I just can’t describe it. I get it down my forearms and shins too. I am now 14 months and counting with this disease. I am finding acupuncture helps, and also have a physio who is helping my muscles recover from so much bed rest and inactivity / pain over the last year.
I went around in circles until I got an immunologist on the case. Perhaps you should get your B12, IgA, IgG, IgM etc checked. Mine were all abnormal, but I’m waiting to hear if there is anything that can be done about it.
C
Linda Turner said,
June 22, 2011 at 3:02 am
OH by the way, I’ve now taken 3 Western Blot Lyme tests …. two came back negative and one came back with a positive band that my Dr. said he never sees positive… so here I am taking my 4th one in 2 months time.
Anyway, the more and more I read about people’s symptoms, I wonder how much of this can really be from an undiagnosed tick illness. There’s so many out there and so hard to really test.
Also, my friend sent me a study that seemed to prove that those who tested Positive for parvo have false negative Western Blot (Lyme test). Weird huh?
Linda
Linda Turner said,
June 27, 2011 at 3:49 am
Thanks for both of your comments. It’s so confirming to hear that other’s share similar symptoms. My right calve can get soooo painful, but it’s fairly short lived. Or if my legs are crossed or in a strange position, they can really hurt. It’s the strangest feeling that I’ve never felt before either. And the foot pain.. it’s sooo strange! Well I’m getting tested again for the 4th time since this all happened this week. He is retesting Lyme western blot again and the Parvo levels again which keep getting lower and lower. And… my liver enzymes which have been elevated since I got this… I’ll keep you posted!
Linda
Luna said,
May 1, 2012 at 6:33 pm
Linda and others re: Parvo/Lyme-
I hope Linda is still reading….and those of you that also had a Lyme connection being questioned. I would love to know exactly what your IgM and IgG bands were- (positive, weak, indeterminate, equivical) depending on the lab, as well as the dates- to see how they may shift.
ALSO- if you had another PARVO test done-AT OR AROUND the same time frame as the Western Blot- what the IgG and IgM were for Parvo was…..
The more I research, read, etc… the more I see curious connections….. nothing new of course- just a matter of us taking a closer “peek” to help not only ourself, but each other, and the future….
The cross-reactive studies between Parvo/Lyme that are out are indeed fascinating….perhaps we can make our own connections- and take it from there…
Also- if you are on other boards with similar discussions- feel free to share- I have seen about 4 or 5 others with Parvo/Lyme connections-
Peace, Love, Light and Healing-
Luna
Lisa said,
June 27, 2011 at 1:00 pm
HI folks
Just checking in… I just passed my third “anniversary” since I got sick in 2008. Still tired of being tired and wondering if I can remember how it feels to not feel pain… My dr just tried me on Wellbutrin but it did nothing except keep me awake which made everythign worse. I feel like I could sleep about a week. he now wants me to try Cymbalta but reading revewis on that and it seems like lots of side effects and hard to get off … not sure about it. Any advice on taking Cymbalta?
I am supposed to start it tomorrow. Of course, he still tells me there is no such thing as chronic parvo and I have arthritis. Sorry, with all my immune issues (Hashimotos, positive for lupus antibodies, ANA) I truly think there is so much more at play here…. nto sure where to do from here….
serenamuse said,
June 27, 2011 at 7:06 pm
Lisa, I was on Cimbalta for about a year and a half. It knocked me out for a couple of week seriously drugged asleep for ages! As I adjusted to the sleepiness I did find that it helped with the pain, but did not help with the fatigue. However, the help only lasted a little more than six months for me. When I approached the infectious disease doc about getting off of it, she said “well, we really don’t intend for people to stop taking it once on it”. Um….I was not happy about that. I did wean myself off of it, cutting the doses, but I went through night terrors, sweats, emotional upheaval like you would not believe. It was not fun! So, keep that in mind. The only thing that has helped me is going vegan – whole plant foods.
Charlotte said,
July 7, 2011 at 1:34 am
I have had a relatively good 5 weeks since starting B12 oral supplements after discovering I was deficient. I was able to go white water rafting, hiking, horse riding…craming a lot in while I felt good. I was re-tested for B12 to see if the tablets were working (I knew they were because I was less tired, more alert, good reflexes and concentration, and less pain) and to assess if injections would be better to get my levels up. To everyones amazement my level was too high!! So much so that my Dr has told me to stop taking them. They are surprised that this has happened because it shouldnt go from deficient to over limit in just 4 weeks. I have started feeling bad again since stopping them. Perhaps the lack of B12, perhaps physcological, or maybe I was just due another relapse. Very frustrating. STILL waiting for feedback from the immunologist after having a load of blood work done in May. 😦
serenamuse said,
July 9, 2011 at 4:12 pm
I’ve been taking B12 since going vegan. I don’t know that I’ve noticed a huge difference, but I’m not always consistent. I will definitely take mine today! It would seem to me that they would perhaps just cut your dose, but not take it out altogether because whatever is causing the deficiency is probably still there and in a matter of time you will be low again. How much were you taking? Just curious. Was it the sort that you put under your tongue?
Sami said,
July 9, 2011 at 1:05 pm
Hello,
I have been diagnosed with parvovirus b19 arthtritis back in 2006, back then I was still studying and did a lot of sport, the arthritis in my wrists ruined it all, I was aiming for a phd in mathematics, and I had to stop because I couldn’t write or use a computer anymore (in fact for a few months I couldn’t do anything anymore).
I think that what helped me getting better was physical exercise, after a few months of intense pain and depression, I was so bored and I didn’t care of what could happen anymore so I started stretching and working out lightly. At first it was painful and scary, but slowly I began to learn how to deal with the pain, for example I know that by stretching and icing my wrists I can reduce the pain, I learned what may or may not induce the pain (for example I use the mouse with my left hand, because I know my right hand can’t do it anymore).
Several years later I am able to do many things that I thought were lost, in fact working out gave me my former strenght back, and I even think I may be in a pretty good shape despite the desease. Of course I still have some pain appearing spontaneously in my feets, wrists, knees, shoulders etc. but somehow it doesn’t bother me as much as it did in the past.
So, I don’t know if it’s good advice or not, but I think physical exercise could be a way to help dealing with parvovirus, at least by making life more entertainning and less depressing, and hopefully it can show us that we still can do many things despite this stupid desease.
(I also hope my english is understandable).
serenamuse said,
July 9, 2011 at 4:08 pm
Hello Sami,
I do do think you are right. I found that I had to find certain things that worked for me. I started using the elliptical machine at our condo several years back and found that it was something I could do without having a lot of pain. I also found that stretching was one of the only ways to deal with the pain at times – the burn from stretching was better than the ache. Swimming is also something that felt good. I did feel better for looking better and being in better shape, but it did not help my exhaustion. Nothing seemed to help the exhaustion but the diet change. I do not have access to a gym right now so try to stretch and walk/hike several times a week. I find being in nature helps my spirits as well as physical well being. Thank you for sharing with us!
Cathy said,
July 17, 2011 at 12:35 am
Serenamuse… you are so talented.. wow!!! Glad to hear that you have attained your goal, with this parvo issue, congrats again!!!
Well I still struggle, I will be heading out to colorado to see an Immunoglist in August, I’m very hopeful that the trip is worthwhile!!
I have been taking Amatriptaline for sleeping, on and off it makes me drag the next day, but does seem help me sleep, but then the dragging seems to counteract the whole idea?? So???
Hope all are having a great summer!
Charlotte said,
July 30, 2011 at 6:54 pm
So, I have had an interesting week. My PCR test was negative, as was parvo IGM – so the virus appears to have gone. My immune system appears to be doing OK too, so I don’t qualify for IVIG. So I guess this is good news – and that I will start to get better? Or will it? Who knows. Surely I can’t get any worse if the virus is no longer in my system?
Diane said,
August 4, 2011 at 6:01 am
I have just stumbled on your blog with great interest. I was doing a little research to see why I am so fatigued and unable to get on top of things.
In Nov of 2008 although I had been dealing with huge levels of fatigue for 3 years, I suddenly became very ill. It happened to coincide with me assisting a woman on a flight (who was vomiting) and 4 or 5 days later I became quite ill.
I became quite confused, and remember just snippets of what followed, but it turned out to be a Parvo 19 virus that went to my liver putting me in fulminant liver failure and requiring an emergency liver transplant.
I did quite well following my Transplant, but now have added things to deal with, but from the start I have felt very fatigued.
Now from this Blog, I will be looking at the Parvo B19 virus with new interest.
Diane
Christi said,
August 19, 2011 at 6:19 am
Hi. I’m a 44 year old female who was just diagnosed with parvovirus today. It all started last week with feeling like I was coming down with the flu which lasted for a couple of days. After that, I was left with a sore throat and swollen lymph nodes behind my ears and on the side of my neck (which concerned me greatly). The following week it only took a few hours for the joint pain to hit me like a freight train all over my body as well as swelling in my hands and ankles. I felt like I was 95 years old! Went to the Dr., had a blood test and was diagnosed with Parvovirus which I have never heard of until this week. My question is, did anyone present with enlarged lymph nodes? It still worries me that they haven’t gone away on my neck and I have felt one in my groin now as well. Thanks.
serenamuse said,
August 19, 2011 at 4:01 pm
Gosh, I don’t remember. Perhaps some of our other bloggers can respond? Did you get a rash? I thought it was unusual to not have a rash – mine was on the back of my hands, others get it on face, chest etc.
serenamuse said,
August 21, 2011 at 6:03 am
Funny reading your responses made me recall that yes, it was the lymph nodes in my arm pits that were so sore I could not figure out what was going on. I didn’t even know I had any there, and was constantly trying to figure out how it was that my arm pits hurt so badly.
Charlotte said,
August 19, 2011 at 4:06 pm
Yes, I had very swollen, tender lymph nodes for about 6 months. They were primarily the nodes at the back of my neck/base of skull and in my groin. The pain was unbelievable and pain killers did not help. I was very concerned that they would become chronic, but they did get better eventually. I’m sorry you have come down with this virus – I wish you a speedy recovery. You will see from my earlier posts that Elavil (20 mg nightly), acupuncture, physio and massage are therapies that get me through each day. I doubt I could get out of bed each day without them.
Stephen said,
August 24, 2011 at 6:29 pm
Once they set into an area (area of origin) the parvo virus that area will be the incubation sport for the virus the rest of your life I was reading in a research journal.
I pray you have many good days ahead of you!
Stephen
serenamuse said,
August 24, 2011 at 7:22 pm
Stephen, so sorry for your pain. I wonder if you could give us the name of the journal and article? It might be worth adding to our resource page. Also, what you say is something a specialist once told me but I have not seen it in print. I’d be interested in reading about it. Have you tried diet changes?
Susan said,
December 27, 2012 at 12:49 pm
Serena,
Was this journal and article ever added to the resources page? I have been told time and again that the swelling in my lymph nodes is “just allergies” now I am wondering if I have been harboring the virus for much longer.
serenamuse said,
December 27, 2012 at 4:50 pm
Which journal/article?
Susan said,
December 28, 2012 at 12:58 pm
Oh sorry… the one Stephen was mentioning in his comment. I will check the page.
Back to reading. It has taken me a few days to get through just the comments on this page. Loving all the information. Thank you!!
Katie said,
November 15, 2011 at 3:21 am
Hi Christi,
Just read your blog and wanted you to know that my lymph nodes have been swollen for a few years. It does subside, but the swelling doesn’t seem to go away. Don’t really notice anymore until it is painful. Sorry to hear you have this too. I am 37, and this thing has beat me up since 1999. wish you well!
Kristin said,
August 19, 2011 at 6:16 pm
Mine were swollen for weeks over a month. I got it back in 2009 and am 39 years old. See a nurrition response therapist if u can find one. It’s usually a chiropractor and juice plus.. Or eat as healthy and take juice plus and supplements homeopathic drs etc. You want tour body to fight this thing off. I’m still struggling but am now doing these things after waiting a year into it. I do believe I will get better but it’s tough. Offer all your suffering to jesus and he will turn it into grace for u and your whole family. If u do it with a loving heart many many great things will cone from the horrid virus. Pray too and I will pray for you and for all people suffering with this!!
Christi said,
August 19, 2011 at 8:46 pm
Thanks so much for your comments. I hate that anyone has this virus, but its comforting knowing that I’m not the only one. I can’t believe how hard it hits you. I haven’t felt like this since I had mono at 15. My legs are still sore like crazy and I just feel like I’m an old lady trying to get around and take care of my kids. It’s really hard finding energy to accompolish anything. My daughter also just came down with fifth disease. The rash is all over her legs and arms. She is wondering why I don’t have the rash, so I explained that it affected adults in a different way. Thanks again for the responses.
Leanne said,
August 20, 2011 at 10:02 pm
Hi, I’ve just discovered this site after much research on Carpal Tunnel Syndrome. I was diagnosed with having had Parvo Virus in Feb of this year.
I was 17 weeks pregnant when we arrived at the hospital for a pre-booked Amniocentisis ( I’m 41). As soon as babys image came up on the scan it was apparant something was wrong – baby was lying perfectly still. A heart trace detected no heartbeat and we found our baby boy had died in-utero very recently. At our midwife visit only days earlier we had listened to the heartbeat.
Labour was induced later that day and our son was born perfect with no apparent reason for the loss. Blood tests from me and the placenta came back with a recent Parvo Virus infection having occured. Because he was born before 20 weeks his birth is not officially registered and is medically refered to as a early pregnancy miscarriage. Anyone who has lost a baby will understand how sad this is. We were able to bring his home and burried him a few days later alongside my Partners mother who had passed away some months earlier, a small plaque marks his unofficial grave.
With a blended family of six girls between my partner & I (5 are all grown up now & our daughter is 2yrs old) we only found out at this stage that our precious little baby was the boy we so desperately wanted.
I have three healthy girls ranging in age from 21yrs to 2yrs and have been through the standard gamult of childhood illnesses over the years – even think I recall ‘Slap Cheek’ being guessed at for one of the children many many years ago.
What I never knew was ‘Slap Cheek’ / Fifths Disease / Parvo Virus can be fatal for the baby when the mother is infected during pregnancy. It now appears I had no immunity to this virus and where it came from or why my daughter who was 18mths old when I was infected – did not appear to get it – remains a mystery.
The greatest shock to us was the unequivical diagnosis from our Specialist that Parvo Virus would have without a doubt caused our sons death in-utero. It causes organ shut down and chronic anemia in the fetus leading to death, most commonly in the first and early second trimester. In the later stages of pregnancy the baby is monitored closely although there is little intervention that can take place, some countries practise inter-utero blood transfusions directly in to the baby before birth but these have their own set of serious risks. The city hospital where our son was born sees only 2-3 confirmed cases of recent or current Parvo Virus infection causing fetal death each year – its rare but lethal.
I had put the Parvo Virus infection and the death of our son behind me until finding this blog. Now I have severe carpal tunnel syndrome that I was considering surgery for – I never realised there could be a link between the two or that Parvo Virus can have serious long term effects – certainly never mentioned by the Specialist
Thank you to everyone who is sharing their knowledge on sites like these – it helps more people than you realise.
God Bless.
serenamuse said,
August 21, 2011 at 6:00 am
Oh Leanne,
Your story brought me to tears. I am so sorry for your heart ache and loss. I am equally sorry to hear about your symptoms. Hopefully they are only temporary. Yes, I am well aware of the dangers of contracting Parvo during pregnancy. I was exposed through my daughter’s nursery school and at the time they had posters on all of the doors warning pregnant women to stay away as there was slapped face going around the nursery. Due to the lack of information on the chronic nature and possible severity of the virus at the time that I contracted it my husband and I decided not to try for another baby as no one could tell me for certain that it would not affect the fetus. It made sense to me that if I was experiencing recurring symptoms that something was still active in my system. They still don’t know a lot about the virus, but they are learning more all of the time. More and more doctors are being educated about the possible long term side effects now. As I say though, there is a good chance that your arthralgias will not last. My heart goes out to you.
Serena
Cathy said,
September 1, 2011 at 3:01 am
Leanne,
I’m so very sorry for your loss!!
Your story is so hard to believe, and just again proves how horriable and serious this disease really is!
I have had this harmless (it will go away) little infection for 2 1/2 years and I remember my Dr. asking after I was diagnosed was, have you been around any pregnant women lately (thank god that I had not been) !!
Good luck with your wrists and God bless!
Cathy
Stephen said,
August 24, 2011 at 6:21 pm
I have been diagnosed at a major university medical school with b-19 parvo, severe CFS, severe Fibromyalgia, autonomic dysfunction, complex sleep apnea (VPAP use) and neuropathy in my leg and have to use a cane to keep from falling and also in my hands. The flair ups and severity are increasing as I near 59 years of age. I was diagnosed with the first of these disorders in 2006. Before this I could walk two-miles on the treadmill in under 30 minutes and bench press around 300 pounds. I can do neither any longer and am going downhill.
I am in such pain now with the swelling of my glands under my jaw and arm pits I can hardly get by teaching my students; I have about 3 years to retire. I have treid the latest edications like Savella and all the killer-T cell natural supplements to very little results.
I pray for all of those who have these disorders.
Amy said,
August 31, 2011 at 6:59 pm
I was recently exposed to Parvovirus B19 in May, 2011. I was a teacher and 3 students in my class contracted it. Around the same time I started experiencing carpel tunnel type pain in my wrists and then my ankles ached bad like someone was squeezing them. Then the pain jumped around- one day it would be pain in neck or hips or knees and next day ankles again. I went to my dr to have them do a blood test for fifths disease and my dr told me he would do it but he didn’t think I had it because it was rare for an adult to contract it. I told him that 3 students in my class had it but he still shrugged it off like it was nothing. Well he did a blood test and the results came back negative. I continued to have the symptoms so I went back to dr & the did more blood tests and found my ANA was slightly elevated. This was a new dr in the office and she said she thought it was Lupus so she sent me to see A Rheumotologist. When I saw the Rheumotologist about 2 weeks later he looked over my blood test results and said he was convinced it was Parvovirus B19 & that my dr only ordered one blood test when in fact there are 2 blood test for Parvovirus B19. I felt relieved that I finally had a diagnosis and that it wasn’t Lupus. I started feeling better over the next few weeks but then I relapsed 3 weeks ago when I moved across country. I think the stress combined with the physical aspect of packing and moving caused it to come back again. So, now I am back to where I started from with the pain! I have been taking vitamins as well as eating healthy as well as daily dose of Advil but sofar nothing is helping.
parvoless said,
September 1, 2011 at 1:49 am
Unfortunately, with my experience..year 3 now..Stress and lack of sleep awakes this sleeping giant. I have had to learn to pace myself and “listen to my body” before letting stress & lack of sleep bring it out of remission.
Cathy said,
September 1, 2011 at 3:11 am
Well, I went out to Colorado and meet with Dr. Melamed, 1st they ran the panel of allergy testing… to find out that I have a # of them (came as a surprise as I do not really have any symptoms) ? Also Dr. Melamed wanted me to go to a Neuroligist out there so I did and just received the results and I have Neuopathy in both of my legs, not in my arm/ hand? So along with the all of the blood work that they did I will have a follow up conference call in about 3 weeks.. so time will tell!!
I still suffer with the fatigue/ tingling in hands, feet….achyiness, brian fog.. all the same stuff… so hopefully I will get some answers???
Stopped the Amatriptaline (I couldn’t function on that )
Take care, Cathy Best to all!!!
Alexandra said,
September 2, 2011 at 1:08 am
Just thought I’d leave an update. The pain got so bad today I broke down and called my dr. He called me after hours and I’m picking up Percoset tomorrow. I hate to do it, but I’m sliding downhill fast. He said we could try it for a week or so and see if the Plaquenil starts helping. Does anyone have any suggestions on pain meds that actually help this? It’s not like a broken bone pain, so the dr. said the typical Lortab and that line doesn’t do much. I honestly don’t know how I’m making through the work day. I can barely lift a glass of water let alone effectively manage my large team. I feel so bad for everyone out here with this. It’s just the craziest thing. I can hardly believe a month ago I was a healthy and vibrant 41 year old woman and tonight I can’t even give my daughter a bath.
Charlotte said,
September 2, 2011 at 2:21 am
Sorry to hear this Alexandra. I know exactly how you feel. I am having a ‘bad week’, but have had a run of good weeks recently. Elavil is the only reason I am able to get out of bed each day. I only need a low dose, it is very powerful (20-40mg). It is very sedative at first, so needs to be taken at night. It will help you sleep. I had bad dreams and a dry mouth for about 2 weeks when I first started, and I am sure I would have similar side effects if I ever try and come off it. But it has given me some of my life back. Also, acupuncture and acupressure work wonders too. I never had time for this in the past, but it really does work (for me at least). It is probably worth a shot, what have you got to lose hey? I hope you feel better soon. Other things that work for me – massage, epsom salt baths, good diet and lots of sleep. If I ever miss a meal, or stay up late it flares up again.
serenamuse said,
September 3, 2011 at 3:40 am
Charlotte, I think you hit on something important, consistency. I find my body does best when I am consistent with my sleep, eating, rest etc. If you throw it off, but skipping a meal or staying up too late, travel is a killer…then you end up paying for it!
Stephanie said,
September 2, 2011 at 1:57 am
Alexandra
So sorry you are feeling this terrible…I understand what you are going through. I took Cymbalta for 7 months and it worked well for me. It took away all of my flu-like symptoms and some joint pain as well. I have been 2 weeks off the Cymbalta and the withdrawals have been hell. So what I am saying is that Cymbalta worked well for me however the withdrawals could be messy if you go off the drug (make sure to taper off and don’t ever quit cold turkey) or if you forget to take a dose. It was also difficult for me to start the drug…I had nausea for a month before my body adjusted to the medication. I guess you have to weigh out the pros and cons. Is your pain bad enough that you’re willing to put up with the Cymbalta. By the way I never had any side effects after adjusting to the medication unless I missed a dose. The reason I decided to go off the drug was because I wanted to see how my body was feeling without it. So far it’s too early to tell. Good luck with whatever you decide.
alexandra said,
September 2, 2011 at 2:11 pm
@Stephanie –
Thanks for the note. I have been on Cymbalta 60mg for several years. They used it to treat my disc pain in my back – I had two ruptured discs. I too went off of it for a couple weeks and it was pure hell. I will never do that again. I guess I might be worse if I weren’t on it? Anyway I start the Percoset today and just hope and pray I can function enough to work and take care of my daughter. I am starting a vegan diet cold turkey, no pun intended. I am hoping it will help. Does anyone have any suggestions on what to eat everyday? I am clueless, but ordered a book last night. I’ll do whatever I can that is in my control to help this. I hope everyone has a good weekend and Labor Day.
Cindy said,
September 2, 2011 at 8:26 pm
http://www.veganpeace.com/links/vegan_starting_kits.htm
serenamuse said,
September 3, 2011 at 3:48 am
Alexandra, getting off of the cymbalta was a nightmare – literally, night terrors, emotional upheavals, hot, cold, sweats, oh my gosh, but once I was off, I felt so much better. But you have to taper off gradually, and it is still hard. It took me about five weeks to cut it off completely. I start my day with hot cocoa – which is soy milk, with cocoa powder and a pack of stevia. Then after I get dressed etc I will have either a smoothie – fruit, spinach, banana, hemp protein powder, juice or water. Sometimes I have oatmeal or musilix with almond, rice or soy milk. I snack – apples, raw nuts of any kind, dark chocolate, drink lots of water, green tea and herbal tea. Lunch is usually a big salad with leafy greens, garbanzo beans, cut apple, walnuts, vinaigrette or just squeeze lemon and a little seasoning salt. If out I get veggie burritos, or veggie sandwichs at subway, Chipotle is good for salads, black beans, corn salsa, guacamole, etc. Dinner I often have whole grain pasta or lentils and rice, salad. I love thai food, middle eastern food. Hummus is good to have around, salsa, lots of veggies. Boca burgers are good for quick protein on a bed of greens.Hope this helps…
Amy said,
September 10, 2011 at 4:59 pm
I am not sure if I have Chronic Parvo – I have had laryngitis for 6 months and in the beginning every joint hurt. Through treatment with prednisone, naltrexone and minocycline I feel pretty much back to normal with ongoing stiffness in my hands and the voice hoarseness. Has anyone else had this experience?
Amy said,
September 10, 2011 at 5:00 pm
And just to clarify I did test positive for Parvo in the beginning – the doctors just seem to think it should be gone by now and I am now left with what could be rheumatoid arthritis. I have had my throat x-rayed, scoped and prodded at but no one sees anything wrong with it.
serenamuse said,
September 10, 2011 at 5:11 pm
Ah well…the thing with Parvo is that rarely do they ever find answers when testing for your symptoms. I mean I’ve gone in with various complaints for years and they never find any cause (other than the Parvo). Also, I doubt they will find rheumatoid arthritis. Parvo usually results in arthralgias, but they are not destructive like the rheumatoid. Time will tell…I hope they find another answer!
Amy said,
September 10, 2011 at 6:05 pm
Thank you Serena – have you heard of anyone else successfully treating laryngitis associated with Parvo? My naturopath has helped more than anyone else and I feel good, back to daily life, exercising regularly – I need a little more sleep now but that’s not horrible. If I don’t my fingers get stiff. I miss my voice though! I am a realtor and on the phone a lot and people have a hard time hearing me. This is a great blog with a lot of solutions and suggestions!
Cindy said,
September 10, 2011 at 7:56 pm
I am going on 3 years with various symptoms, no definitive “diagnosis”, and tremendous challenges with “flare ups”….
In January I had a two week + bout they called “some virus”….the reason I finally went in is because it looked/felt just like strep…but- wasn’t- hmmmm. I lost my voice almost entirely for about 6 days and entirely for about 6 – it was the strangest experience- and a tad scary. I was in the process of moving and couldn’t even get a sound out- others had to make calls for me, etc…. It was time for me, losenges, vit, c, echinachia sp? and time…My prayers go out to you….
I just had another round of labwork done- nothing out of the “ordinary” except very low cortisol- checking on that next week. Anyone with low cortisol? Connected to the CFS??
Blessings….
Charlotte said,
September 11, 2011 at 4:19 am
Hi Amy.
Yes, I had various throat symptoms for several months (9+) after getting parvo. I had throat scope, thyroid ultrasound etc and nothing was detected other than redness and irritation. It was put down to the virus, and viral thyroiditis (found with blood work) and was told it will go eventually. Thankfully it did…also thyroid issues sytabilized. Keep positive…time is a healer…even though it seems like it is going on forever. It has been 17 months since I first fell ill, and I have just managed to have a 7 day vacation pretty much symptom free…and actually managed to spend half a day at a theme park (unthinkable this time last year) and do some body boarding at the beach.
Good luck.
Charlotte said,
September 11, 2011 at 4:20 am
I read this terrible story today, and thought I would share with you all.
http://brandon.patch.com/articles/11-year-old-valrico-girl-touched-many-lives
Cathy said,
September 13, 2011 at 2:48 am
Gosh… terriable…I wonder how common this is???
Thanks Charlotte!
Cathy
alexandra said,
September 12, 2011 at 3:55 pm
Hello All,
Any advice on how to deal with the exhaustion? I could sleep all day and often find myself drifting off at my computer at work. My energy level is zero. I am struggling to keep up with my 5 yr old daughter and she is so upset that mommy is sick all the time. Last night I played a few rounds of the old game Trouble with her and for those of you who remember it, you have to push on a plastic bubble to roll the dice. I couldn’t push it down, my right hand and side of my body seems the worst. Not sure why. Last night the pain in my legs, thighs, was awful. Even a strong sleeping pill didn’t help. I feel like if this gets much worse I’m not going to be able to take care of my child. I hope everyone is doing better.
Cathy said,
September 13, 2011 at 2:55 am
Oh boy can I relate to you, it is tough trying to be Mom when you are so exhaused, I wish that I had answers for you… I have heard Folic Acid… B12….. maybe could help… I started b12.. and it really bothered my stomach,
I have the best luck with Motrin…..?? I think that it helps, I do often wonder if it is doing much after 2-1/2 years taking it?? Probably it has become a habit???
Have you had Parvo for a long time??
Best to you.. take care, Cathy
Seana said,
October 1, 2011 at 12:14 am
I posted this on another page but I’m re-posting here…. I had parvo almost 2 years ago, and it took over a year for the majority of the pain to dissipate. Most days now (and I realize I’m lucky) there is no pain. However, about a week ago, I got my flu shot. By the end of the first day after receiving my flu shot, my wrist joints (which were the worst of the “parvo pains”) and ankle joints began to hurt. They have gotten a bit worse – not as bad as when I had parvo but they hurt none the less, and not like the muscle aches that people get w/ the flu shot. I’ve heard of people having “flare-ups” but have you heard of anybody reacting this way to a flu shot? I really thought my body had finally kicked this thing, but now, I’m not so sure.
serenamuse said,
October 1, 2011 at 12:50 am
I had never given thought to flu shots or other vaccines being an issue until seeing a new doctor two weeks ago. She said she had noticed with her CFS, Fibro type patients that they can have really adverse affects to vaccines. She told me to make sure everyone around me is vaccinated for my protection, but to avoid getting them myself. I guess your experience shows, she is right! So sorry!
Charlotte said,
October 1, 2011 at 3:55 am
Yes, Seana. I was thinking of posting on here that parvo sufferers should think twice about the flu shot this year, but I never got around to it. I had mine last year, thinking if I got the flu in addition to parvo I would be in serious trouble, but I reacted in the exact same way. I was doing a lot better before I got the shot, and then it flared up big time. Wrists, ankles, muscles. I definitely won’t be getting it this year and will be keeping my fingers crossed I don’t get the flu. Funnily enough my Family Doctor told me not to get the flu shot last year, but a week after I had actually gotten it. I have also read on CFS websites that flu shots are bad for that too. I hope you feel better soon – as always, good diet, rest, massage, acupuncture, and B12 is my advice.
alexandra said,
October 3, 2011 at 4:25 pm
Hello Everyone,
I hope there are those who are having some health and peace as fall starts. I have been having awful pain that is really debilitating. The Plaquenil I am on is not helping. Does anyone know how long it can take to help? I have two doctors and they disagree on that issue. Also, does anyone know about treating this with an anti viral drug? Any luck with infectious disease doctors? I am still hearing that this virus is species specific, but I find it so coincidental that I had a puppy with Parvo last year who I had to put down. The medical community also said Bird Flu was species specific and it turned out they were all wrong. Thoughts?
Cathy said,
October 15, 2011 at 10:25 pm
Well I have great news…I seem to be sick enough to get IVIG Treaments… I finally spoke with Dr.Melamed after a visit out to Colorado to see him at the end of August.. and because of my elevated Blood work ( ANA’s/ Ds DNA/CPR etc….Neuopathy in my legs that I had tested while being out there) as well he also found that I have some food and indoor/outdoor allergies and they have alot to do with the immune system!!
I have had Parvo since April of 2009 and still have many problems since..fatigue/ aches/muscle weakness/ shortness of breath.. have Doctored alot…. including a round at the Mayo all that was found was a so called diagnosis of Fibro ( do not believe that)
So anyway will continue to post as things move along… still in the planning stages… Dr. Melamed wants me to come out there for the 1st of 6 IVIG Treatments ( one a month for 6 months)
I’m pretty darn excited that just maybe this could address the problem and not just cover it up… with Steroids/Plaquenil/ sleeping pills etc.. or the rummy telling me that I have to come back in 6 months to check my bloodwork with a possiable Lupus diagnosis???
Thanks Take care…. Cathy in MN
Cathy said,
November 27, 2011 at 2:32 am
Well…………. an update….. Finally!! Waiting game!!
Well Started a new Diet.. no wheat/Dairy/Eggs… (allergic to all) been a challange but it seems to be going well!!! Lost inches and some weight.. can not believe the feeling of bloated/puffy is improved alot!!!
This is all per the visit I had with Dr.Melamed in Colorado in August!!!
Also started allergy shots, for the the Indoor/Outdoor allergies… Cat hair/Dust mites/ Grasses/mold.. that is going fine.. seems to hurt after (which makes sense I guess, as they are injecting the
allergen/s)
Also taking Singular and Allegra daily…. so with all of that … I hope something helps… as you all know good and Bad days!!!!!
And the IVIG part… I was crossing my fingers… my Ins asked for addional info to support my needing IVIG.. and then denied it as Off label use… BUMMER!!!!
So still lots of shortness of Breath/ exhaustion after going up steps.. muscle weakness.. achy/ Tired.. achy neck/shoulders/ hands/ feet….joints ….. mn weather… :(????
Motrin.. lots… vitamins…. is what I’m doing!
Take care.. will keep updating
Cathy in MN
Charlotte said,
October 16, 2011 at 7:58 pm
That’s great news Cathy. Good luck! Unfortunately I spent the night in hospital again last night. My heart rate is still in the 100’s (been like this for over a year) and I was getting / still having severe chest pain and shortness of breath. I had the usual tests done and apart from tachycardia nothing really showed up. The doc has given me some advice. He wants me to talk to my Internist again, or get a second opinion, about my tachycardia. He doesn’t think it is right to let me just live with it under orders to not exert myself. He wants something done about it, even if it means taking drugs to bring my HR down. He said it could cause permanent damage. He thinks it is myocarditis brought on by Parvo – there is a lot of literature around that.
Charlotte said,
October 29, 2011 at 5:24 pm
http://www.menafn.com/qn_news_story.asp?storyid=%7Bc36e3cb1-bf16-488e-988b-faf747cdde75%7D
Very exciting news this morning. It appears that three scientists at the National Heart Lung and Blood Institute, Hematology Branch believe they have invented a vaccine for the prevention and treatment of Parvovirus B19.
Let’s hope it is licensed and distributed as soon as possible,
C
serenamuse said,
November 3, 2011 at 1:51 am
Wow, looks interesting. I wonder how long it will take for this to go through approval process? Do you think it has already gone through testing?
Alexandra said,
November 4, 2011 at 2:53 am
Hi Everyone,
The vaccine news sounds good. I hope everyone is doing as well as they can. Thanks to all the replies I received about what to eat. They were very helpful. I haven’t gotten any better. I’m due back at the rheumatologist shortly. I suspect he will want to increase the Plaquenil, but I am not crazy about that idea and the serious side effects. I do not believe it has helped at all. I am in constant pain, but try not to dwell on it or think about it much. Last weekend I actually thought I had broken a finger for a moment and realized it was just the intense joint pain. Luckily it has subsided. Does anyone have hand shaking issues? My hands have started to shake a lot lately. I also went to minor er for a sinus infection. The antibiotic I’ve been on for a week hasn’t helped a bit. The right side of my throat and right ear are killing me. I just can’t stop the sore throat. Anyone have this problem too? It seems as if you get sick with Parvo like a sinus infection it just won’t go away. I’m on a powerful antibiotic and no relief in sight. As always I hope there are some out there having more good days than bad and any thoughts are much appreciated. I continue to search the web and there is still not much out there about this. What I know for sure now is that this doesn’t just go away in a few months. Peace to all.
Alexandra
Alexandra said,
November 6, 2011 at 9:42 pm
I got a sinus infection 2 weeks ago and they put me on the usual Augmentin. I got sicker and Saturday went back to minor er and had a horrible case of strep throat. The dr. said he’d never heard of someone getting strep while on an antibiotic. Then he said, oh wait, you have parvo. He told me the Plaquenil was just killing my immune system. It’s not helping with pain one bit. Anyone had this happen? I’m thinking I’m going to stop taking the Plaquenil. Thanks for any replies.
Cathy said,
November 27, 2011 at 2:17 am
Hello Alexandra… interesting that Plaquenil may hurt the Immune System I was on it the spring/Summer of 2010 to that fall… didn’t seem to make much differnece.. now thinking back the fall/Winter is when my problems got even worse….. more aching…. muscle weakness….all that…. it waxes and wanes…but wonder if the Plaqenil.. didn’t create more problems???
Strep on Antibotics…. I do not put any thing past Parvo.. and the damage that it causes!!!
How are you feeling???
Take care… Cathy
I have Ear pain…. sore throat.. pretty often… good old Parvo!!!
Barbara A said,
November 30, 2011 at 12:12 am
Hello, I to was infective by Parvo 19 (fifth disease) 2 years ago and my life has not been the same since. It seems that I have chronic joint pain, low grade fever (flu like) with systemic edema. My primary thinks i am psychotic and my new rheumatologist completely ignores my complaints. So I went to see a psychiatrist who realizes I am not “nuts” nor seeking drugs, in the beginning I was on plaquenil, predisone and norco for pain. It worked but at some point the pain medication was not working well and kept needing more to just get out of bed in the am. I am asking anyone who lives in New England area if they know of any parovirus clinical research or a physician that actually has experience with our health concerns. Would seeing an immunologist or infectious disease doctor help more? I am will to travel from NYC to Maine.
Cathy said,
November 30, 2011 at 4:34 am
Hello Barbara….. life for me has not been the same either, since I was diagnosed in April of 2009… I have a Great Dr.
I have done the rounds.. with Rummys… Mayo.. I’m wonderfully healthy (yeah Right).. why do I have a bunch of strange elevated Bloodwork then???
Do you have any Lupus.. symptoms.. ana’s… or anything like that???
Well if you have tried everything else.. try to find a Immunoligist/ Allergist.. worth a try???
They seem hard to come by around my area???
An infectious Diesase Dr. I have heard has been helpful.. I tried to see one or the other at the Mayo.. NO luck there… they sent me to every other Doc.. Rummy/ Pain Dr. / Heart.. you name it!!!
One Rummy I went to…. had heard of Parvo.. and said that it can cause problems???
But Dr. Melamed in Co. actually explained how Allergy/ Immune/Neurology issues, from Parvo.. cause all these symptoms that we all experience.. so that in itself was soooo nice to hear…. so trying to follow the diet.. allergy shots… etc????? When I talk to the Nurse from Co. I will ask her if she can recommend a Dr. out your direction???
Good Luck.. Take Care! Cathy
Stephanie said,
November 30, 2011 at 4:09 am
Hi
After coming down with parvovirus 2 years ago I finally went to a very reputable fibromyalgia clinic. I was of course diagnosed with fibromyalgia. Scientific research shows that parvovirus is one of those viruses that can trigger fibromyalgia. I stopped the Cymbalta (it was helping but I didn’t like the side effects). After exercise (which I thought I couldn’t get through because of the chronic fatigue) I was assured by the rheumatologist that I could do it and that yes the fatigue would be worse at first but to push through it a little at a time, proper sleep and good diet I found myself back to normal. I still have joint pains…which may never go away. Oh well. I also discovered on my own that the hand weakness got better by doing push ups. The push ups were painful for my hands at first but I found that the more I did the better I got. It’s almost as if I had to restrengthen what was weakened from the virus. Anyone else try this? I need to be careful though…I have had a relapse for staying up way to late (black friday) and being sick. Time to rest, and start the exercise routine again after I’m better. Happy Holidays!
Barbara A said,
November 30, 2011 at 9:10 pm
Thank you for the folks that responded to my posting, but I am still trying to find a good doc in the Connecticut, Rhode Island, Mass area. I am depressed because like most of you even though I look wonderful on the outside the inside is a train wreck. All my testing comes back normal except my C50, C4, C5 but the docs here say I do not test positive for either lupus, rheumatoid arthritis, CFS or fibro.
Stephanie said,
November 30, 2011 at 9:29 pm
Barbara
I don’t think there is a definitive test for CFS or Fibromyalgia. Here is the site for the Fibromyalgia clinic I went to in Massachusetts. The doctor I went to really knows his stuff and I’m sure he could help you. Please research him.
http://www.nwh.org/medical-surgical-departments/medicine/rheumatology/
Good Luck!
Stephanie
Barbara A said,
December 2, 2011 at 12:24 am
Thank you just went to #3 Rheumatologist and she said she has no knowledge of parovirus or chronic syndromes left by this nasty virus, and I was making it all up and she would not give me anything to help relieve the pain. Nice huh?
Katie said,
December 2, 2011 at 2:25 am
When teachers have students that they need to differentiate their instruction for, it would never occur for the teacher to say…” We just don’t know about kids like you, therefore, we can’t teach you.”. UNACCEPTABLE!
Stephanie said,
December 2, 2011 at 2:44 am
Barbara
Just so that you know you’re not wasting your time…this doctor in Massachusetts is very familiar with parvovirus causing fibromyalgia symptoms. It’s even documented in a handout he gives you. Please let me know how things go.
Stephanie
Risa said,
December 4, 2011 at 11:18 pm
Chronic Parvo Headache from past Parvovirus
I would be interested in hearing from anyone with a chronic Parvo headache. Our 15 year old son has had a headache for over 2 years now – since Nov. 2009. He no longer has the virus but wakes up and goes to bed with a headache. He also struggles with fatigue. Weather changes make him feel worse. His immune system seems to be compromised.
What didn’t work/hasn’t helped:
1. Three stays in the hospital to treat headache only before diagnosis availed no long term benefit.
2. Headache medications – On our own we took him off all meds about a year ago when it became clear they were not helping.
3. Physical Therapy – Made him feel terrible for days afterward. Therapist really didn’t understand.
4. Doctors giving up on us and not understanding and thinking he is depressed. Ironically, he is a really positive kid that has not to date struggled with depression.
5. People not understanding and thinking he needed to push through – he is every day!
We found a new doctor this August 2011and finally an accurate diagnosis for past parvo. We do have the support and input from a local lady who also has a parvo headache. She has been struggling for 5 years.
What we have learned:
1. Parvo apparently affects the meninges – the layers that cover the brain and the spine.
2. We have heard that the Cleveland Clinic has documented some cases of chronic Parvo headache.
3. We are not sure what the future holds or if his life will ever be “normal”.
4. Have fun at home! Try to keep things light some of the time. Find a balance for the rest of the kids between being effected by an ill sibling and having a normal life.
5. Get outside.
6. Take baby steps to keep making progress on days you can.
What we are doing now – Dec. 2011:
1. Our son is currently seeing a chiropractor 3 times a week and feeling some improvement but not in the headache. (Apparently parvo affects the meninges that cover the brain and spine.)
2. Terazadone and melatonin at night help him to get to sleep when is really tired already but not before.
3. We are beginning to work on diet, going greener and organic. We eat pretty healthy already but with a full time job i am feeling a little overwhelmed at the prospect on top of homeschooling a son with headache. We just purchased the book Maximized Living Nutrition Plan. (He is 15 so I anticipate changes to be somewhat gradual.)
What we would like to know from anyone with a parvo headache:
1. What worked?
2. What didn’t?
3. Facilities or doctors that have experience with Parvo headaches.
We would be glad to answer any questions. Hopefully something from our experience is helpful to someone. Blessings!
Chaundra Catrone said,
February 2, 2012 at 9:02 pm
Hi Risa,
I have been dealing with Parvo since June of last year. My worst symptoms at this point are the daily gripping headache and fatigue. My joints will also ache and if I’m having a really bad day, I feel nauseated. I have finally decided to try to get help again from my doctor, as the rheumatologist didn’t know what else to really do for me with this diagnosis. I’ll let you know what, if anything, helps.
Chaundra
Michelle said,
July 3, 2012 at 6:26 am
Dear Risa,
I have had a constant debilitating headache for over 5 yrs, It is exactly as your son describes (I never described it with the pirate reference but I may now :-)) My heart goes out to him and your family. He must be very strong. I am sorry he has this.
In february I had blood tests for levels of several viruses based on Dr. Dantini’s book “The New Fibromyalgia Remedy”. My parvo level was 6.1 times normal (old virus though — not acute). I do not seem sick). I believe my headache is caused by parvo.
I would love to talk with you more about this. I have not met anyone else with this. I am wondering if you have tried antiviral medicine such as acyclovir, valtrex, famvir? Or, are you saying that even when all the levels in the blood (even for prior infections) are restored to normal that the headache remains due to lasting damage?
I recently found that Marinol does reduce the severity of the headache somewhat. This surprised me after *so many* drugs did not. I had problems with dizziness on it and a difficult withdrawal but am still glad I know of something that helps, since I may wish to use it again in the future.
I will receive an email if you reply to this post and will respond.
Thank you so much for sharing your experience!
Blessings!
June said,
July 11, 2012 at 7:42 pm
Hi Michelle,
I went to my Dr. on July 2nd. for fatigue, headaches and joint pain.
I am 65 and also have Crohn’s disease, somewhat under control.
They ordered blood work and bingo (Parvo) I never heard of it before my DX. My white blood cells were low. I don’t have all the numbers but will get them this week.
My Dr. said there is not much to do for it except steroids and I would rather not after using them for my crohns.
I am sorry about your headaches, i have delt with them for years.
I hope you get relief soon!
I am glad I found this site, it seemed like no one I knew ever heard of Parvo….
I will be in touch as soon as I get my report from my Dr.
Cathy said,
December 5, 2011 at 2:19 am
Risa.. thanks for the post, so sorry to hear of your sons problems.. I hope that he can find something to help him!!
I can not believe that info on the Meningis… I have never heard that…. I have a vise grip on my head most of the time… where are your sons headaches.. mine are not a regular kind of headache.. basically they wrap my whole head/ neck mostly the back of my head… aching /tightness all of the time!! something else…. the other night my husband was massaging my feet and my Big toes where so sore.. and loan behold they are a pressure point for the … Head/Brain.. I was shocked and now.. this info tonight???
Did they expand on what damage is being done to the meningis.. this makes alot of sense.. if the meningis is inflammed/ damaged.. I spoz that could cause pain/aching???
Like I mentioned in previous posts.. I have cut out Wheat/Dairy/Eggs… as they say I have allergies.. have not had a great improvement…yet???
I fear of never getting back to “normal” which is hard to except.. but just to not be in pain would make life alot easier… as with your son, I feel for your family… I wish you only the best!!!
Can i ask what meds your son was taking.. what didn’t help!!
Does he have the pulsating/ thrumming/ vibration running though his body? Arthritis symptoms???
I wish I could afford.. Chiro/Massage/accupuncture/Reiki/ on a weekly basis, they seem to help!!
Take Care, Cathy
Risa said,
December 13, 2011 at 5:35 am
Cathy,
Sorry I am so late in getting back to you. Daughter was in a musical this past weekend and the practice schedule the last week just about killed us. 😉
I will ask the chiropractor tomorrow if she can provide us with any more info on the effects to the meningis.
Our son’s headache is a tension headache – the neurologist said it was a compression/ implosive headache. In otherwards the pressure is inwards versus explosive headache which feels like the outward pressure. Our son explains that it feels like 2 concave “pirate eyepatches” pressing in on his temples. (He was into pirates when he was little.)
I am just realizing thanks to this blog that he probably has chronic fatigue as well. He says the fatigue is as big a factor as the headache. Up until the last week, I thought the fatigue was product of the headache.
Did you have allergy testing done to determine the wheat, egg and diary issues?
There have been so many drugs some have helped for a while only to quit working after a period of time. Others have helped and then he would catch a cold and all the progress would be undone not to be regained with the particular drug. As I mentioned before, we finally took him off everything but the Terazadone and Melatonin which do help him get to sleep at night.
A partial list of drugs we have tried for the headache(keep in mind this is a constant headache not a migraine:
Tordal, Indomethicin, Nadolol, Misoprostol,Amitriptlyn,
Sansert/Deseril (which was ordered by perscription
from the UK. )
Fish Oil is used to treat headaches in the UK according
to one headache doctor.
Our son does not seem to have arthritis symptoms but he has had a lot of growing pains. Growing as much as 1/4 a week at times. They do think the timing of his going into puberty was a contributing factor to the illness taking such a strong hold.
I would encourage all parvo patients to go be evaluated by a recommended chiropractor. Dr. Bishop is treating 3 other parvo patients besides our son- 2 of whom are experiencing some notable improvement thus far. Visit http://maximizedliving.com/ to find a Maximized Living chiropractor. This is the only chiropractor our internist would recommend locally.
They provide home equipment, special filtered water, excercises, x-rays, inflamation scans and additional classes on healthy living. Insurance picks up some of the pain expense.
The inflamation scan is really fascinating as are the x-rays showing the curvature of your spine compared to what it should be.
Our son has been going for 8 weeks now and feels better even though the headache itself is not better. He has some mild scoliosis and is excited to get his 2 month x-rays this week to see the improvement thus far.
Blessings!
Ashley said,
December 13, 2011 at 3:41 am
I have been having a hard time finding any information on this. About 2 years ago after my second child was born I started having rheumatoid symptoms. I was only 25 and some how I thought it was dehydration from breast feeding. After about 6 months I had a doctors appointment and told her all my symptoms. She suggested it could be rheumatoid arthritis or lupus. She did some blood work, but my symptoms had already passed. She said that I could still have one of those things, but that it wasn’t showing up bc it was in remission. I never looked up any thing on either of the diseases and decided not to worry about it unless it came back. I just had my 3rd child 7 months ago and I started having the symptoms again although much worse. They use to go away after I was up a few hours and it was mainly my hands and wrists. Now it is all my joints. I can barely drive the car and I can’t carry my sons car seat. I am so tired I can barely stay awake. I feel like my brain is turned off. I get frustrated when people ask me where things are bc I can’t figure out how to verbalize things like “in the kitchen”. They did a lot of blood work my rheumatoid factor was ok although higher than last time. My sed rate was good. The ANA was negative, but the parvovirus B19 can back pretty high. My doctor sends results through the internet. I got this after the office closed today, and when I looked at the historical results I see she didn’t check this last time. I don’t know yet if this is chronic. I suspect it much be bc I had it 2 years ago. I read your story and saw you had a lot of information on here, but I don’t know where to begin. I would really appreciate a point in the right direction. Thank you
serenamuse said,
December 13, 2011 at 4:13 am
I would start with this article http://www.aafp.org/afp/1999/1001/p1455.html
then make your way through some of the articles on the resource page. Unfortunately there is no cure at this time and no one agreed upon treatment to manage. Sifting through the blog may give you some ideas for your situation. I personally have found a vegan – whole food – diet to make the biggest improvement, but not a cure. Hopefully others will write in with suggestions for your situation. Don’t be surprised if your doctor does not seem to know much about Parvo B19 or says it is no big deal. Many doctors are just not up on the current research that indicates the serious nature of the virus. Glad you found us, but sorry you are suffering.
Cathy said,
December 13, 2011 at 4:38 am
Ashley.. so sorry to hear of your trouble…. where to start with Parvo… I have had it 2 1/2 years… and now has turned into some kind of AutoImmune thing that no one seems to be able to pinpoint,, sounds like you have a great Dr…. well.. as I’m sure that you have read.. some have improvement with Diet… I was recently to an allergist I have Allergies.. following a diet…as I have food allergies… also indoor outdoor.. so I’m doing allergy shots…. I lost 10 lbs and do not feel so bloated.. but still have the achy, painful joints, fatigue, head clamp… etc, etc. You mentioned the not being able to verbalize… oh boy can I relate… I have hesitated on writing letters… it is horrible and embarrassing!!!! I always say I hope my brain is on. As you read….. the Menangis has me VERY interested as this headache thing worries me!!!
IVIG has proven to work/Help? If you can get INS. to pay or a Dr. to do it!!!!
I remember reading an article/post..not sure if on here or not.. but it seemed that the Baby was keeping mom well.. as with IVIG the Immunity that you do not have maybe your 2 year old/7 months old was giving you.. I have read so many stories of Pregnant women + Parvo are a scary combo.. do you know what your IGG/IGM #s are??
When did you have the Positive Parvo.. 2 years ago or recently?? I have a high IGG.. which is NOT OK.. it is out High on the range.. and many Dr/ have overlooked this.. and it does mean something??
You could have a PARVO PCR.. if your Dr. is working with you.. mine is Negative.. most people like us are negative… but if it was Positive.. it is an indicator that it is really chronic!
Another Great site for Parvo is… the mirandamissionhumanparvovirussupport Feel free to email me if you want to!!
jeffncathy12@yahoo.com
I wish you the best!! Cathy
Teresa said,
December 13, 2011 at 9:32 pm
You know we are all CRAZY! 7 years for me here. I go through stages like Lupus or MS. Just had another doctor’s appt and he said I might want to think about seeing a SHRINK..
Go figure.
serenamuse said,
December 13, 2011 at 10:30 pm
Well, you know at times it can make me feel crazy going through this. Every December I seem to crash. This one is no exception. I have not left the house since last Friday. I’m doing better today. I just need to plan on lots of down time over the winter break. There is a quote that I used at the top of my Thesis that I’d like to share.
Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about the physical terrain of a disease.
Susan Sontag
Teresa said,
December 14, 2011 at 1:40 pm
OK… just got some tests back and after 7 years, positive for Parvo again. I knew I wasn’t crazy. I don’t know if I should laugh or cry.
Katie said,
December 14, 2011 at 12:16 am
Thanks for that quote Serena! I’m reading the latest comments and feeling so connected to all of you! Wish we could all show up together at some doctor’s door who would be willing to CARE!! Trying to find ways to describe this to dr.’s, is becoming comical. 12 years for me. For those of you that just found you have this tornadic disease, I have found this site very wducational
Teresa said,
December 16, 2011 at 8:01 pm
OK, all bloodwork is back again. Parvo showed I had it and also the Epstein-Barr virus. I have never had anyone tell me I had MONO. I must have had it and thought it was a flare up of the Parvo crap.
I feel like I am never going to get a doctor to help me….. 7 years now and I am so tired of it.
Cathy said,
December 17, 2011 at 2:18 pm
Hello
Teresa Do you have High IGM/IGG??
My IGG is around 5 the last time it was checked in August which most Dr.s have said that is good as that is suppose to show that your body has build up an immunity, but not according to Dr. Melemed.. that is out on the range???
My IGm is low as it should be as that shows that there is not a current Parvo infection??? So I would be curiuos to know your Parvo IGG and IGM #’s??
I also have Epstein Barr.. that seems to be pretty common for us long time Parvo sufferers!!!
Best to all…. 8 Days till Christmas…. and it will be a Brown one in MN it looks like,,,, around 50 tomorrow.. WOW!!!
Cathy
Teresa said,
December 19, 2011 at 4:20 pm
Hi Cathy,
I have sent an email to the nurse requesting my numbers.
Teresa said,
December 24, 2011 at 12:25 pm
OK.. got my labs.. IGG is 5.4 and IGM is 0.5
Cathy said,
December 17, 2011 at 2:32 pm
Has anyone here tried Cannibas .. we were watching TV the other Night (WEED WARS) and they were showing that it is proven to help…. Epilepsy/ MS/ cancer… so anyway we did some goggling and it is legal in many states.. and can help with many of the symptoms that I know that we all share. Fibromayagia being one of them… I was told I had that (whatever… couldn’t come up with anything else
The one gal on there said (she was completely paralyzed from MS) that she was completely against drugs and if you would have asked her 5 years ago…. she would have said never… but this unlike all those GREAT PHARMACEUTICAL DRUGS actually helped her pain!!!! The little boy that had seizures daily,and had not had one for 4 days since taking it in liquid form.
I guess it seems safer then meds.. it grows in the wild?? I know that Montel Williams uses it.. he was on Oprah or Dr. Oz a while back.
Not legal where I live… ?????
Just thought I would pass that on???
Hugs…. Merry Christmas… Cathy
Teresa said,
December 22, 2011 at 3:09 pm
Do any of you have low Vit B and folic acid?
Charlotte said,
December 22, 2011 at 10:12 pm
Yes, I had low B12. I am on oral tablets now and have more energy.
Teresa said,
December 23, 2011 at 4:43 pm
My doctor wants me to take Metanx and it is 123.00 for 60.. Trying ti get insurance to pay. 😦 It is a medical food.
Tam Wedgwood said,
December 24, 2011 at 11:37 am
I swear by Vit B – but the whole complex, not just B12. My daughter takes a high dose of vit B complex daily and I credit that with much of her recovery. Her transformation from bedridden and breathless to semi-normal life began with Vit B.
She also takes vit D – I think that’s important too, to support the immune system since this is an immunological illness and most of you probably have erratic blood counts and will find that production of white blood cells stops during the flare-ups.
Cathy said,
December 25, 2011 at 2:52 am
Theresa.. that is so interesting … so why are they saying that you have Parvo again.. your IGM is low acccordig to my range….is your Dr. referring to your IGG?
…. my IGG started at 4.68 with a 13.10 IMG at the time I was diagnosed on 4-09..
then on 8-09..IGG was 3.96/ IGM 1.1 is high so the 5’s that we have are out high.. not sure what it means apparently over active Immune system….????
While I have my Bloodwork out… my Epstein Barr is EBV ab VCA IGG is 8.0 and 1.0 is out.. ?? Also EBV Nuclear antigen Ab,IGG is also 8.0 out is 1.0
Well hope that everyone has a very wonderful Blessed Christmas… Take Care, Cathy
Teresa said,
December 25, 2011 at 1:33 pm
Cathy,
He did write OLD on the Parvo. My EBV is also 8.
Ali said,
December 26, 2011 at 11:38 pm
Hi,
I am a 22 year old female and I was diagnosed with Parvovirus in July of this year. I have been suffering from severe fatigue, muscle weakness, and headaches in the front of my head ever. I have been seeing a chiropractor since I was diagnosed and he seems to be helping. Recently I have been feeling better and am hopeful that I will recover. I am curious if others have had their symptoms disappear only to have them come back later as this is something that really worries me. I am also curious if anyone has had experience with pregnancy after being infected. I have always wanted to have a family and I am terrified that this virus could have diminished that possibility. Any information you guys have would be greatly appreciated.
serenamuse said,
December 27, 2011 at 1:03 am
Hi Ali,
I am so glad you are feeling better. I had been ill for about six months, then was fine for nearly a year. The symptoms returned after a very stressful move, across country, with small children and little money. I would say that there is a good chance that you will recover, but please be mindful of stress, try to keep it at a minimum and take good care of yourself. So little is known about pregnancy after being infected. I decided not to have more children, in part because I was not well enough to care for one, but also because I did not know if the virus could cause problems. If you contract parvo during pregnancy it can be very dangerous to the fetus, but really don’t know what the problems might be if you get pregnant after contracting the virus. You are so young though and if you really want a family I would follow your gut, talk to your doctor and take your chances. Since you are aware of the parvo, if there are complications they will be on the look out early and take proper measure. Best of luck to you!
Serena
Charlotte said,
December 27, 2011 at 1:09 am
Hi. Sorry to hear your story. My boss was pregnant when I got parvo and she went to get tested because of the known high risk with pregnancy and live virus. She was told she had already had the virus so there was no risk to the baby. However, I’m not sure on the likelihood of the pregnancy flaring up your symptoms and making you feel worse. I have been left with sinus tachycardia after my virus infection (two years on) and when I asked my cardiologist about starting a family at the moment he simply said ‘don’t do it’. I guess it depends on your symptoms, how bad they are, how often they flare up, how sensitive they are to stressors etc, and what drugs you are taking. I am not wanting to start a family right now (thankfully), but hope to in a few years and would definitely get a second opinion then.
Teresa said,
December 27, 2011 at 3:26 pm
Hi Ali,
I think most of us here will say it comes and goes. I get really bad around 3 -4 times a year. My health has really gone down in the last 7 years.
I hope you find a doctor who understands it.
priya said,
January 23, 2012 at 10:40 am
Hi Ali
i had parvo in 2007 which caused my miscarriage ( i was pregnant with twins) this was an ivf pregnancy to make matters more upsetting anyway the good news is that in 2008 i conceived thru ivf and have a healthy boy who is now 2.5 yrs old. you shouldn’t have any concerns about getting pregnant (especially if i could do it thru ivf! 🙂 good luck.
Priya
Kelly said,
December 31, 2011 at 8:21 am
Hello Everyone!
I have been reading everyone’s posts for hours now and wow, I can’t believe what I am reading. My heart goes out to each and every one of you. Fifth’s – Parvo is an awful virus-disease and I am very scared now – yikes!
A month and a half ago I came down with really bad flu and cold symptoms and fevers. Then I got sore, swollen glands and was extremely tired all the time. Not long after that I woke up with insanely swollen, stiff, painful hands-fingers, elbows, knees and feet-toes. I was very scared and concerned I had Lupus or RA as they both run in my family. I went to get blood work done and my doctor said it could be Lupus, RA or Fifth’s. My results for Lupus and RA came back normal but I am still waiting for my results for Fifth’s – they should be in by next week. Plus, my doctor thinks that is what it is. (Just wanted to mention, I am a married 30 year old woman – no kids yet, from Ontario, Canada) I was happy to hear that initally from my doctor because I thought this virus went away after a few weeks to a few months…but now I am very concerned as I haven’t gotten even the slightest bit better yet. I am seeing a Rheumatologist on Jan 3rd so that is good news. I am just worried about all this as I have currently have other health issues such as severe dizziness for the past 1.5 years and chronic neck pain. As I type now, my hands are sooo painful and stiff, its taking me a while to type. I am currently taking Arthrotec but those meds aren’t really working. Someone above was asking about Cymbalta – eeeek, I personally would stay far away from that stuff. I have been on and off other anxiety-depression type meds and this one and Effexor were terrible with side effects and coming off of them was terrifying! I was taking those meds to deal with my chronic dizziness and severe neck pain…now this?! OH NO… 😦
Keep you all posted on what my docs say and if I do indeed have Fifth’s – which is what it sounds like!
Wishing you all the best – try to stay positive, at least we are all in this together! xo
Kelly
Tam Wedgwood said,
January 3, 2012 at 10:16 am
Jesse,
Thanks for contacting me. It is really interesting that your pattern of illness has seemed to be very similar to my daughter’s – catching it in elementary school, but then suddenly becoming severely ill when 15. For some reason I didn’t receive email notification about your initial comment, only this “P.S.” and I haven’t found your full message on here, so have only read the section of it enclosed within the email, but I’ve read enough to see the similarities. I am very interested to hear about your experience and would like to talk more.
She does/did get a lot of canker sores (but so do I?)
I did wonder if hormone changes had anything to do with the flare-ups, with the severity starting when she was 15, but doctors did not seem able to comment on that. We were under a LOT of stress at that time too, so I know it wasn’t “just” the hormones. I’ve written a book about what we were going through stress-wise – her illness was only a section of our story (though it tended to blot out everything else for me in importance at the time) but I still hope that if people read that part of my book they will see how serious this is and awareness of parvo will grow.
She’s doing a lot better now we are away from the stress (and maybe now she’s older and hormones are settling – she’s 18 now).
Would love to talk more. Hope to hear back from you.
Charlotte said,
January 12, 2012 at 12:22 am
I have just had my last visit to my Internist. He has given up – he doesn’t know what to suggest for my lingering symptoms (tachycardia, fatigue, neuropathic pain in arms and hands, aches, chest pain) and says there is no point in going back to see him because he can’t explain it. I thought doctors were supposed to keep going until they got to the bottom of things and got you better? It’s nearly been 2 years since I got parvo and have effectively been told ‘this is your life now, get on and live with it’. I just don’t know where to go from here. I am going back to see my cardiologist in a couple of months but he is at a loss too.
Teresa said,
January 13, 2012 at 6:17 pm
We are a MYSTERY DIAGNOSIS…
Kelly said,
January 16, 2012 at 5:53 am
Hi Everyone,
I just wanted to give a quick update – turns out I don’t have Fifth’s Disease (I was very surprised to be honest) but all my specialists are saying it is some strange virus. I am having blood work done tomorrow for Lyme Disease as I have been struggling with these odd symptoms for 1.5 years (overall) and its getting worse. I was also in several area’s 1.5 years ago that had ticks and my friend’s dog even ended up getting Lyme Disease. My joints are all extremely swollen, stiff and painful (hands, fingers, toes, elbows, feet and one knee) along with many other strange symptoms that keep changing or piling up. My mother in law’s best friend had Lyme Disease too and had all the symptoms I have.
I am nervous – eeek, wish me luck!
Good luck to everyone else too – I hope you are all getting the answers and medications you deserve!
Kelly
Barbara A said,
January 20, 2012 at 2:15 am
have you thought of aplastic anemia, many chronic parovirus folks have been watched for this, look up Dr. Young at national institute for health, he is a leading expert on parovirus
Charlotte said,
January 20, 2012 at 2:46 am
So I have been told that my parvo virus has most likely been reactivated, or reinfected. After nearly two years the lacey rash is back on my hands, arms, lower legs and feet. My ‘slapped cheek’ rash is back, but quite mild, just like the first time. All the usual symptoms are back – swollen painful lymph nodes, stiff neck, burning joints, etc. I can’t believe it – I cannot go through this again. Has this happened to anyone else? I will be going for blood tests to confirm, but two docs have said it has to be the parvo – such classic signs. Very upset. 😦
serenamuse said,
January 20, 2012 at 11:06 pm
Oh yes. It had been about a year and a half for me, when the rash came back and all the tell tale signs. It was after a very stressful move across country. So sorry.
Charlotte said,
January 23, 2012 at 2:36 am
Yes, this has come about after flying long haul back for Christmas. I initially got it after flying long haul too. Have you ever had IgM and IgG checked during the flare ups? Is there any point? Will they be positive again?
Katie said,
January 20, 2012 at 3:52 am
Hello Charlotte and to all
I’m sorry to hear your news. It’s terrible! To be hopeful it’s gone only to feel it all over again..
I have had this occur a few times and now I just learn to deal, or rather understand it when it knocks me off my feet. I’ve been an array of a mess since 1999. Prayers are with you all!!
Cathy said,
January 22, 2012 at 1:22 am
Well I was able to talk to Dr. Melamed (finally) a few weeks ago and finally have received a new treatment plan (as IVIG is off the radar, a no… from Ins) so I am suppose to continue Allergy shots (they make me feel rotten)… also take Singular ( it is making me feel AWFUL…. so not sure that I will continue.??)
Also he recommended some supplements….. some formulated by him ( an Immune Booster) some others formulated by a Neurologist?
So I hope and pray that they will give me some improvement as I have been feeling pretty rotten lately!!
They seem to be mostly natural ingredients in the supplements. I’m also still following the Egg, Wheat and Dairy free diet ( difficult, but getting used to it, it would easier if I felt better on it)
Has anyone heard of or been told that you may have Myasthenia Gravis.. In addition to the ANA’s, DS DNA”S and Anticardiolipins elevated I have elevated Myelin ab IGG (Peripheral and CNS) and when goggling info on this blood-work I came across Myasthenia Gravis.. and could not believe how many of the symptoms were similar to what I have… so just wondering???
Risa….. also the Meningis with your son….( I have a clamp headache most of the time) so I asked Dr. M’s nurse about this and sure enough, here the result for the Myelin is positive.. from the bloodwork in August??? CRAZY.. all the dr.s that I have seen and explained this Clamp headache.. and they say that is stress.tension/headache.????
How is your son doing??
My best to all, sending Healing to all……
.Cathy
Risa said,
January 22, 2012 at 3:30 am
Hi Cathy! Thanks for asking about our son. He is about the same as far as the headache. He does feel better overall when he goes to the chiropractor 3 times per week consistently. He is about 3 months in this intensive chiropractor program. Followup xrays show that the spine is slowly moving back to closer to where it is supposed to be. Unfortunately, there is no real change in the headaches yet.
We have him on a whey protien to try to build some stamina/muscle and are looking into adding a special vitamin D and special omega supplements.
This blog helped me realize that his fatigue is not from the parvo headache but he probably has chronic fatigue that so many of the other parvo patients suffer from. I also appreciated the info on Dr. Young with the National Institute of Health. Comforting just knowing that there is going to continue to be more info on and hopefully prevention of Parvo. http://www.nhlbi.nih.gov/resources/chi/directors/young.htm
We continue to work on detoxing our lives and diet at doctors recommendation.
Will let everyone know if we find anything particularly helpful.
Blessings! Risa
priya said,
January 23, 2012 at 10:32 am
Hello
I came across this site bcos i recently developed mycoplasma pneumonia and just wanted to see if there was a connection with the parvovirus i contracted in 2007. The reason for my research is that the symptoms were almost identical apart from a few variations. i have been prescribed antibiotics for mycoplasma as this is a bacterial infection. i just don’t understand how a viral infection and a bacterial infections should cause me to have the same symptoms. iv been on the antibiotics about a week. Since being on the antibiotics my symptoms have lessened but i don’t know whether this is to do with the antibiotics or that it is already getting better (as the first time i was in so much pain then got better then got ill again but not as bad as first time then got better then got ill again. each time the symptoms were less severe as before) I am just wandering if people should be tested for mycoplasma also as there may be a connection. perhaps people who have had parvo in the past are susceptible to mycoplasma? in which case taking antibiotics should help. I am also concerned about taking antibiotics therefore i drink probiotic drinks to replace the good bacteria.
I haven’t had a chance to read through the whole of this blog so not sure if anyone else has touched on this.
Priya
Cathy said,
January 24, 2012 at 3:30 am
Well I had some awful reactions from the Singular and the Allegra… was told today by Dr. Melameds Nurse to STOP the Singular.. so I will start the supplements tomorrow as they came today…. hopefully they will help in some way!!
Priya.. do not recall hearing about Mycoplasma…I do not doubt though, that it is related to good old Parvo!!!
Best to all… Cathy.
Teresa said,
February 2, 2012 at 1:10 am
How long did it take for a doctor to say you had CFS?
Linda Turner said,
February 2, 2012 at 11:05 pm
Hello fellow Parvo victims! It’s been a while since I’ve posted. I had Parvovirus in May of this year. It was horrible!!! It took all summer to feel “normal” but I still have some lingering issues.
I’m writing to see if any of you have or had continuing leg pain. I’m not talking about the joint pain that you feel when the Parvo first hits… that’s HORRIBLE!! This is more like muscular… almost like a blood clot pain, but I don’t think I have a clot. They come on sharply like I was stabbed and some times they just ache…
I’m wondering if any of this is related to the Parvo? It seems like what Fibromyalgia might be… maybe?
Anyone else???
Thanks!
Linda Turner
Charlotte said,
February 3, 2012 at 1:21 am
Yes, I get pains in my legs. From my knees down, at the front and on top of my feet. And the same from my elbows down and on top of my hands. I have just got some Voltaren topical gel treatment. It seems to help kill the pain. I have been told it is neuopathic pain. Acupuncture and massage help lots too, which are covered on insurance in Canada which is nice. Good luck.
Linda Turner said,
February 3, 2012 at 4:27 am
Wow! that’s great! I don’t think it is here. Mine are my knees down too. I’m also in menopause and I read estrogen can give you leg cramps… so who knows??? What a mess huh? This mysterious illness creating all these issue. I’m sick of it and only 43! Thanks for your suggestion!
Linda
Katie said,
February 2, 2012 at 11:59 pm
In response to Linda: I just got off the phone with my sister explaining/ comPlaining about how bad my feet and legs hurt. There are all sorts of ” parvo pain” that people describe after the initial, horrible joint paint. I know it’s hard to describe, but it’s a “different” pain!! I guess I just wanted you to know that you are not alone. Wishing you all the best!
Linda Turner said,
February 3, 2012 at 4:28 am
Thanks Katie… you too! What a pain, literally!! I wish it was just more definative in the symptoms. Tough stuff…
Thanks again!
Linda
Stephanie said,
February 3, 2012 at 2:30 am
Does anyone have problems with the way they feel after getting a massage? I had a swedish massage 3 weeks ago and have been in a lot of pain since. It actually put me back into a relapse. 😦
Cathy said,
February 3, 2012 at 2:57 am
Hello Stephanie, sorry to hear that you are not feeling well… yes….. I have had that happen actually, I spoz that it gets the Immune system working,.. to much??? Just a thought?? I have had a number of massages and that only happened one time.. I had a foot reflexology done a few weeks ago… ohhh that was wonderful!!!
Linda….. Oh boy do I have Leg Pain….mostly the shin and down , more so in my feet and then my wrists and Hands… have been there since I was diagnosed 2 1/2 years ago .. like Charlotte and Katie said… it is weird… painful/Tightness/ tingling/Burning… this pain actually was better when i was doing the Singluar/Allegra and Allergy shots… as I have not done them in awhile now…. I notice that is back, pretty badly….. but I think overall i feel better.. Energy… anyway!!!! Time will tell….. I was diagnosed with Neouopathy in my Legs…. so apparently this is what Neoupathy pain is!! 😦
When I dr. at the Mayo they said Fibro…????? Dr. M says CFS…????
Healing to all.. Cathy
Linda Turner said,
February 3, 2012 at 4:30 am
Neoupathy? Hummmm explain more…
I noticed I get shin splints when I walk now… that never happened before either! I wonder if Parvo is to blame. The pain is like an ache or a sharp pain.. it varies… but I’m tired of it!
Thanks again!
Linda
Katie said,
February 11, 2012 at 12:57 pm
HI Linda and to all.
Recently been told I have polyneuropathy. Going for new tests now.. Emg, MRI, heart monitors. Tilt table test, … Can’t remember the rest because of brain fog. There are a few more tests. I’m scared about the emg because I read it’s painful. Parvo has destroyed me. Wishing all of us a miracle…
Barbara A said,
February 5, 2012 at 6:25 pm
I too, have terrible upper leg pain, mostly spasms and weakness. The doctors here think I am drug seeking, I tell them just stop the misery. Plus I had a gastric bypass which severly limits what I can take. My question: does anyone have unexplained body edema(swelling)?
Katie said,
February 11, 2012 at 12:51 pm
Responding to Teresa… Can you believe it took 13 years to hear the words. “CFS” from a doctor? Ayayay.
Stephanie said,
February 11, 2012 at 4:18 pm
I am going to recommend a book that I bought a year ago. The first time I scanned the book I wasn’t sure that Fibromyalgia and CFS was the right diagnosis for me after getting parvovirus…but now 1 year later after picking up the book again, I am certain that I have Fibromyalgia and CFS. The book is
http://books.google.com/books?id=yX8foTkkrEcC&pg=PA372&lpg=PA372&dq=the+first+year+fibromyalgia+claudia+marek&source=bl&ots=-s5nnG5a5o&sig=8E_hNSzxwgGNuJBW54bzEqct3AQ&hl=en&sa=X&ei=KpQ2T7OwCqq90AGV7_HFAg&ved=0CEgQ6AEwAg#v=onepage&q=the%20first%20year%20fibromyalgia%20claudia%20marek&f=false
serenamuse said,
February 11, 2012 at 5:01 pm
Thanks Stephanie,
It looks interesting. I’ll put it up on the resource page. You know CFS and Fibromyalgia are really names for a group of symptoms that they don’t know the cause for. Recent research is starting to point in the direction of a virus (not necessarily Parvo) but up until now thy just gave those names to anyone who had the symptoms. The parvo symptoms are so similar. I’ve always figured eventually they will figure out that we ME, CFS, Parvo, Fibro people are connected in one way or another even if it is just that different viruses can cause similar results and possibly be treated the same way…
Chaundra said,
February 17, 2012 at 10:13 pm
Does anyone experience heart palpitations related to their Parvo? When I first became ill I had a rapid heartbeat but that symptom went away after the first month or so. Now, 7 months later, I had a bad episode of tachycardia with a “feeling of impending doom” this past week. Doctor did an EKG and it was fine, but I am still supposed to get an Echo. I know that the Parvo can affect the heart, but if so, should I be worried about any damage that is truly happening? Any have experience with this?
serenamuse said,
February 17, 2012 at 10:29 pm
I definitely have. There have been times when I thought I was having a heart attack. I’m afraid I don’t have an answer for you about damage being done. Any tests I’ve had never show anything there…
Charlotte said,
February 18, 2012 at 12:04 am
Yes, I have had this too, for nearly 2 years. At first it was thought to be because the parvo gave me viral thyroiditis. The over active thyroid can cause tachycardia. My thyroid corrected itself, but the tachycardia has not got any better. I too have had a heap of EKGs, echos, stress tests, and nothing has shown up except tachycardia. Parvo can cause myocarditis, but this should show on an echo and blood tests, so has been ruled out for me. My cardiologist thinks it could be deconditioning from being sick for so long (chance it may get better), or damage on the cellular level in the heart (will not get better). We are discussing drugs to lower the HR. Drs are also looking into lupus and the possibility of a stomach ulcer from all the NSAIDs. Keep fighting – no one should be expected to live with tachycardia for the rest of their lives. Drugs, ablations, excercise therapy are options and you need to find a cardiologist (or electrophysiologist) who is willing to discuss this with you. Good luck. x
Stephanie said,
February 18, 2012 at 12:24 am
I have had PVC’s before fifth’s but it’s interesting you mention the heart palpitations because I have recently had a very scary episode where the palpitations we’re so strong that I got dizzy and it felt like my heart was going to pop out of my chest. It lasted for about 7 seconds. I was sitting down on the couch. I have also noticed that after going on my stationary bike for 15 minutes that I get palpatations afterwards(that are weak) but I can feel them. This is a recent development. It has been 2 years since exposure to fifths.
Cynthia said,
February 17, 2012 at 10:48 pm
I definitely have too…. Very strong first two months- intermittent for 2 1/2 years….Nothing showing on tests….(yet?) Best offering- listen to your body and definitely follow up on any concerns when you have the opportunity, right connection, (and money ;). Best to you!!!
Cathy said,
February 17, 2012 at 11:11 pm
Chaundra..
Me too!!! I get it worst when going up stairs shortness/heavyness hard to explain!
Recently 2-3 times I have the strangest flutter like feeling in my chest/heart area…. its always something new and interesting with Parvo!
Also when laying on my left side.. and sometimes when I put my arm over my head it is very scary.. the shortness of breath..heart racing feeling!!!
I to have had no bad test results (yet..like Cynthia stated) and I have had the rounds!!!
Good Luck.. Cathy
Katie said,
February 18, 2012 at 12:11 am
Serena and all,
When I first started reading all of your words, I just had Ebsteinn Barr and Parvo. Fastforward two years, I’m now diagnosed with.. Still EB. Chronic parvo, polyneuropathy, demeyelanating Disease of central nervous system, and now… CHronic fatigue syndrome.. I had an EKG today and have a heart monitor for 48 hours. Next week I get an EMG and several other tests at hospital. I have read all your experiences in regards to such tests that don’t show anything. I know I have to go through them, I’m just anxious to rest instead of running all over the place. Im so scared about the EMG. I read it’s painful. Hate needles. I have now been to a counselor twice, as I am beyond depressed.
Has anyone heard of formula 303, or used it? Or licorice root or powder? There’s a video on you tube of a woman who is so sweet and she explains that Ginger root tea is helping her.. I’m praying for all of us!! I play the lottery lots. Don’t want this double life of trying to smile at work anymore!
Chaundra said,
February 18, 2012 at 1:10 pm
Katie – I can really appreciate that last sentence! The doctor asked me the other day how I continued to do my work (I’m a physical therapist, so very active job). I told her that I just “put on my happy face, then come home and crash!”
Chaundra said,
February 18, 2012 at 1:07 pm
Thanks for your responses everyone! I figured that would be the case – more tests and nothing will be conclusive. At least it is good to know that the heart is otherwise functioning normally, but again I worry about the long term ramifications of what this must be doing to my system. Every day is a new adventure in this journey with Parvo. I’m glad that their are others who truly understand what I am dealing with!
Angel said,
February 21, 2012 at 8:08 pm
Greetings All-
I have noticed that there has only been one of us (a recent post) that has mentioned “pleurisy”. I would love to know if anyone else has experienced this/been diagnosed/have had increased (scary;) breathing challenges. If so- what have you experienced? I have had a few scary moments recently…not just a shortness of breath- but tightening in the chest, a few chest pains. Heart looks ok so far- pleurisy was mentioned.
Thanks bunches-
serenamuse said,
March 2, 2012 at 4:58 am
I’ve never had that mentioned, but have had experiences like you mentioned. I just waited them out, but it sure was scary at the time.
zoraida lopez said,
February 23, 2012 at 2:08 pm
All my life I have lived with pains. I have gone from doctor to doctor looking for answers. At age 21 doctor said to me r u sure its not in ur head? That was worse then the pains I got. Since then I have learned to live with pain n when I get flares to take napoxin that always seemed to takin swelling down. About a year and a half ago I got really sick. My knee, hip, shoulders and wriste started to swell n notthing worked. No doctor beleived me but couldn’t explained why i hurt. My eyes got inflared last year n that’s when I finally got tested for everything. I breath n tiredness everyday. I get out of bed at times wondering when will I fall over. This pain is so bad at times n then I’m ok. Doctor gave me nabumetone and plaquenil it helps syptoms for the most part. Since October 2010 I have been told I have parovirus b19 and I’m not getting any better even with medicine I’m always tired. I also have had anemia for over 10 years and a thyroid issue doctor says that’s why I can’t fight this virus. I don’t know if that’s true. Can anyone help???
serenamuse said,
March 2, 2012 at 4:56 am
Have they offered IVIG treatment? It is highly expensive and not a lot of doctors have experience with it, so would need a specialist and your insurance may not want to cover it, but really, aside from going vegan, it’s the only think I’ve heard of helping to “get rid” of the virus.
Kate said,
February 10, 2016 at 9:15 pm
Hi Serena,
I caught Parvo right before Christmas (2015). I received a positive Parvo blood test result on New Year’s Eve. It was gone by January 3. Then it came back a couple weeks later. I’m now here trying to find positive information and treatment for the disease.
I have been 95% vegan for the last 8 years. I don’t have any underlying problems or other diseases. I am a healthy 33 y.o. with 3 small kids to care for. My questions is -where did you find the information that a vegan diet can ‘cure’ this disease or at least prevent flare ups?
H said,
February 24, 2012 at 10:26 pm
I just landed on this page, stupidly trying to self diagnose. I’m just so tired of being sick and having every doctor think I’m crazy.
Unexplained symptoms:
-swollen lymph nodes under jaw (2 months)
-painful joints all over body (in places I didn’t even KNOW had joints)
-sore neck, back
-recurring, caffeine-deprivation like headaches
-short outbreak of several canker sores
-something that looks like svt in my leg, which is sore right now in the calf
-extreme fatigue. Like, I all the sudden need to get into bed or I’ll fall asleep on my feet
-felt worse around period, when I got svt and more body/joint pain
I just got a regular blood test done to check for mono, infection, etc and my doctor says everything came back normal. Unfortunately, she thinks there’s nothing wrong with me, like I’m making this all up. Even though my lymph nodes are swollen to the touch. I don’t know what to do anymore. Is this Parvo? How do I go about getting my lazy doctor and useless insurance company to help me find out?
serenamuse said,
February 25, 2012 at 12:18 am
I would suggest you ask if they tested you for Parvo. There is no cure, but would at least validate what you are going through, which is a lot sometimes.
Charlotte said,
February 25, 2012 at 1:36 am
Yes, ask them to check Parvovirus IgM and IgG. IgM is indicative of current infection, IgG is past infection. I would also ask for ANA, RF, CRP for lupus (which they think my parvo has triggered). Good luck.
serenamuse said,
March 2, 2012 at 4:54 am
I’d suggest changing doctors and find one who will test you for Parvo. My doctor recently attended a conference in Chicago where they had a lecture on parvo and how to diagnose it. It was the first time she had ever heard anything about the serious nature of it, so the information is starting to get out there.
Tam Wedgwood said,
March 2, 2012 at 9:40 am
Serena, I am so delighted & excited to read this! This is a serious illness & awareness needs to be raised – especially among doctors. I’ve just written a book about our experience – it’s not directly relevent to this site as it is less about my daughter’s parvo & CFS than about the stress that aggravated it. However there is a section about how serious her illness was, how hard it was as a mother to watch my child suffering so much, and about how strongly I wanted people (& doctors) to take it seriously and realise this is a devastating disease.
My book mentions the dietary solutions we tried & our experience with a doctor who told us my daughter was depressed (she wasn’t!) I have also included this blog in a resource list for other CFS/parvo sufferers who might need help.
If you or anyone else is interested, my book’s called “Keeping my Head” by Charlotte Chapman & it’s available on Amazon Kindle. As I said, it’s only of tangential interest for Parvo, but that section might help or be of interest to some sufferers. If not interested, please ignore my plug!
Cheryl said,
March 2, 2012 at 3:40 am
Just found this site after picking up my 2nd round of lab results today and frantically searching the internet for some idea of what I’m dealing with. The only positive result from my blood work was Parvo B19 IgG at 4.83, and a slightly elevated RDW. Originally went to my internist after 3-4 months of throbbing finger joint pain. I’m a photographer for a living and just assumed I had some overuse injury. But when the pain persisted after not picking up my camera for 3 weeks, I started to worry. First round of bloodwork all came back negative for RA, Lupus, but no Parvo testing was done until I saw a Rheumatologist. Started me on Prednisone, 10mg 2/day as diagnostic tool which I started taking this morning. Also seeing an orthopedist to rule out carpel tunnel.
Now that I’m reading all the posts on this site, I’m pretty scared. I’m 48 and I’ve had a history of neck, low back, hip, and foot pain, and bouts of extreme fatigue, brain fog, severe headaches, and a recent episode of ankle swelling, but never would have associated them with Parvo until now. Only other contributing factors I can think of that’s changed over the last few months is I started on a birth control pill (which I’m getting off of now), and had much more stress in my life than usual.
Following up with the Rheum. Dr. next week. Would appreciate any advice on what to do from here. Thanks for creating this blog. It’s the only site I’ve found for people to share their experience with Parvo.
serenamuse said,
March 2, 2012 at 5:04 am
If they don’t find anything else then you can be fairly sure it is the Parvo that is causing your issues. Unfortunately there is no cure. People write in with things that help. For the most part drugs are only a temporary fix, and tend to cause more side effects than can be worth it. The only thing that has been a lasting help for me is going vegan, whole foods, no soda, alcohol and very little sugar (I use stevia). I hope you find help soon!
Cheryl said,
March 2, 2012 at 7:26 am
Thanks Serena. No cure isn’t what I wanted to hear, but glad to know you’ve found relief through dietary changes instead of drugs. Saw your reference page and book recommendation from Fuhrman. I’ll check it out. I’m about as far from a vegan, no soda, no alcohol person as you can be right now, so I’m curious to see if diet alone can help me. Also, hoping I don’t have one of “those” drs who dismiss Parvo as no biggie.
Cheryl said,
March 9, 2012 at 9:41 pm
Saw the Rheumatologist today and he totally wrote off Parvo as the cause of my RA symptoms. In fact, he said having the antibody is a good thing, and my tests just show that I had the virus a long time ago and that it’s very common. Based on my symptoms, he thinks I have sero-negative RA and encouraged me to start on one of the arthritis drugs to prevent future joint damage, in addition to low-dose prednisone to get me through my photo shoots. He was so nonspecific, gave me brochures describing all the drug options and their side-effects, and pretty much left it up to me to decide which to try!
So, just made appt. for a 2nd opinion with another Rheum. from the Norcal Arthritis Center. Now I understand how frustrating this all can be! Besides finger joint pain and general aches, I’m finding myself exhausted all the time. I thought maybe this was just from stress and depression over being in pain, but now wondering if it’s all related to RA and/or Parvo.
I bought Joel Fuhrman’s book and working on changing my diet dramatically. Just wondering if that alone is enough to reduce inflammation and prevent joint degeneration from RA???
serenamuse said,
March 18, 2012 at 5:21 pm
The joint issues associated with Parvo are not usually degenerative. If you have RA then it is most likely not a result of Parvo – at least that is my understanding. One thing about the diet changes – they can’t hurt you! It is just good sense and even if it does not completely do the trick, you will feel all around better for putting good food into your body. Let us know how it goes!
Jeepers said,
March 6, 2012 at 6:07 pm
Hi all. Sorry I havent posted sooner. I did 5 days of ivig the last week of Jan and sadly I’m not cured. Right after I finished the ivig I had terrible side effects that included headaches, extreme leg pain and a rash on the palms of my hands. It’s been 5 weeks since I finished it and I think it has helped my fatigue a little and some numbness. My anxiety and panic over nothing is back though. Does anyone else have that??? I did go back to an llmd last week and gonna try an antibiotic as he is insisting it is Lyme (even though my labs say negative). My fp is saying it can’t hurt.
It has been a year this month that I have parvo. I can’t believe it. My main complaint is still my wirey (as I like to call it) head. It’s a feeling I have trouble describing. Spacey, foggy, lightheaded. I also have some pain and weakness in my hands and legs. At times I get shaky and it feels like a river is flowing thru my body. No one really knows how this all feels except maybe some of you. In hindsight I felt the best at Christmas time. I’m guessing that was from the steroids I took over thanksgiving. All was on the up until I caught the flu in early Jan then I had the ivig. I’m going to a rheumatologist this week for the first time too.
On another note I just had another MRI of my brain 2 weeks ago. The final sentence on the report read “I suspect this is post viral manifestations”. Great to hear that in a way instead of check for ms. Hard to believe this went after my brain/nervous system. Will this go away? When? Staying optimistic. My fp says this could take a couple yrs.
Jeepers said,
March 6, 2012 at 6:21 pm
Just read thru a ton of comments and Katie- sounds like we have the same thing. They have me under acute demylinating disease. Have you had mri etc?
Leslie said,
January 23, 2013 at 1:04 am
Hi, Jeepers and Katie… If you happen upon this response, would you mind elaborating on the neurological testing you have had done? How did the doctors diagnose the demylination? Was it strictly from the brain MRI or did you have nerve conduction studies/blood work that demonstrated this? I have negative nerve studies but a lot of the neruologial manifestations you have mentioned. I appreciate your time!
Jeepers said,
March 6, 2012 at 10:04 pm
Does anyone have suggestions for Anything that has helped with spacey/foggy/dizzy/lightheaded symptoms relating to parvo? Herbal, antibiotic, supplement, anything?
Any help is tremendously appreciated. Hope everyone is well
Katie said,
March 7, 2012 at 10:50 pm
Hi to all and in response to Jeepers.. I recently had an EKG, echocardiograph, EMG , cartoid Doppler , heart monitor and last but not least brain MRI. The only results thus far are from the EMG .. Dr. Said I don’t have muscle damage, but there is nerve damage… If it weren’t for this site, I would have not known that many of these tests cone back negative. As soon as I get other results I’ll let you know… This is so hard. I have been very aware of the brain fog, as it and dizziness is getting worse. I dread going up the stairs. All I can say is I’m learning to listen to my body more. Doing laundry has become a major accomplishment. Rest helps the fatigue, but never ever feel rested. Nothing helps the pain for me yet! Brain fog is terrible and also looking for anything that will help… I have licorice root on my list of things to try. Sorry I sound so negative. truly am wanting to be positive.
Jeepers said,
March 8, 2012 at 4:58 pm
Katie- I feel your pain. Since this started a yr ago I’ve had an echo, ekg, EEG, 5 MRIs, 2 spinal taps, an evp study, and loads of blood work. I found a good article online. Is your head bothering you the most? Seems quite rare. I will paste it below. Please let me know your results and how the licorice works for you.
Prior to the advent of specific virologic techniques, neurologic symptoms associated with erythema infectiosum were reported in a few cases (20, 34). Since, B19-specific antibodies and/or DNA in blood and cerebrospinal fluid have been detected in fatal (135) and nonfatal cases of encephalopathy (231, 380; Watanabe et al., Letter, Arch. Dis. Child. 70:71, 1994; Yoto et al., Letter, Lancet 344:624-625, 1994) and aseptic meningitis (53, 146, 240, 312; Tsuji et al., Letter, Eur. J. Pediatr. 149:449-450, 1990; Oeda et al., letter). Neuropathy (Faden et al., Letter, J. Infect. Dis. 161:354-355, 1990), complex regional pain syndrome (343, 353), and neuralgic amyotrophy (Denning et al., Letter, J. Neurol. Neurosurg. Psychiatry 50:641-642, 1987; Pellas et al., Letter, Lancet 342:503-504, 1993) have also been observed after B19 infection. Detection of IgM (Tsuji et al., letter) and DNA (53, 240; Watanabe et al., letter; Yoto et al., Letter, Lancet 344:624-625, 1994) in cerebrospinal fluid seems to be a very rare event, reported in only five patients. One patient suffering from seizures received successful immunoglobulin therapy (231). The mechanism for the neurological symptoms is unknown, but frequently rash or arthralgia is also present, suggesting that the neuropathy may be immune mediated.
Jeepers said,
March 9, 2012 at 5:04 pm
Ok. I went to a rheumatologist yesterday for the first time. He was literally my last specialist to visit. Been to neurologist, ms specialist, infectious diseases, endocrinologist, etc. He did a thorough exam and spent a while talking to me. He suspects more of a post viral problem but gave me some suggestions that I thought I’d share to help alleviate some of the symptoms. May be nothing new to some of you though.
Drastically change my diet to low or no sugar and avoid carbs
Cymbalta
Fish oil
Kyani sunrise (order on Internet)
Chaundra said,
March 16, 2012 at 12:16 am
I am interested in the Kyani sunrise. Looks expensive though. Please let everyone know if/when you start using it and how well it helps.
serenamuse said,
March 18, 2012 at 5:27 pm
Be careful with cymbalta! It helped my pain for about six months, but not the fatigue. After a year I realized that the side effects – weight gain for one – were not worth the drug and I wanted it out. My infectious disease doc says “well, once we put you on it we never intended for you to get off”. I spent a month weaning myself from the cymbalta and it was horrible! Night terrors and sweats, suicidal mood swings…it was not worth going on in the first place. Read about it before getting in too deep. Also, the good that the diet changes can do will be off set by the drug in your system. You are not letting the good enzymes fight off the inflammation. Remember it is not just about what you don’t eat, it is about what you do eat – lots of raw leafy greens, fruit and veg, seeds, nuts and whole grains.
Jeepers06@hotmail.com said,
March 22, 2012 at 6:40 pm
Thx Serena. I’ve heard CYMbalta can be scary. Gonna try not o take it!
Charlotte said,
March 17, 2012 at 6:52 am
An inspiring story from a fellow sufferer.
http://www.vcstar.com/news/2012/mar/12/no-headline—lim/
Cathy said,
March 17, 2012 at 5:19 pm
Well not been feeling so hot lately and ended up being Influenza a and they put me on Tamiflu on Wednesday. I noticed that on Thursday my lymph nodes/ glands in my face neck.. where really swollen, the salivary glands just hurt when I would eat…. weird..I’m used to sore lymph nodes/ sore ears and stuff of course…and with the flu.. I didn’t think to much of it… thought that my Immune system was in overdrive.
But then yesterday morning.. under my left eye even was all swelled.. basically the whole left side of my face was swelled up and hurt like crazy when I ate ( could see it just looking at me.. nasty) ….so I called the pharmacist and he suggested to get it checked out… well Thank god… I went in and the Dr., I had thankfully has been around while….. he says that is an allergic reaction to the Tamaflu ( good old drug side effects.. I belong to 1% of people with this reaction to tamiflu..I’m special) and it is called Stevens Johnson syndrome (what the heck is that) … turns your skin into a blistering… peeling mess ..really yicky stuff, he said if I looked on the net it is bad… boy he is right!!
On the bright side…it seems a bit better today.. not so painful to eat ( YIPPY) OFF THE TAMIFLU and on steroids.. oh brother. I should get alot done in the next few days on those…. if I can sleep….20mg a day… right over to that pharmacist and Thanked him for suggesting for me to get in!!!!
Have you all noticed that if you catch something that you are sicker then before Parvo… this is the sickest I have ever been in my life.. wow!!!
Jeepers…. how are you doing????
Do you all get the flu shot???
Hope this finds some feeling better!
Best to all, Cathy
serenamuse said,
March 18, 2012 at 5:19 pm
No, my doctor told me not to get the flu shot, that she had seen many adverse reactions over the years in patients with CFS type conditions. I do find I have to be so careful with medications. I recently had a similar reaction – with my face swelling up – to a drug given to me for acne. I have learned to avoid taking things as much as possible. Since having parvo I find my illnesses are shorter lived – as if my body is already in fight mode so tackles them head on. I hope you feel better soon!
Jeepers06@hotmail.com said,
March 22, 2012 at 6:39 pm
I’m doing ok Cathy. Thx for asking. I think the ivig did help in some areas such as fatigue. My head is still screwy though and I notice when I’m nervous or anxious my symptoms go way up. I’m currently just doing the fish oil for now 2x a day. As per my dr I am also pushing myself to do more (parks with my daughter) which I think is helping a little. This past Monday I felt really good and then Tuesday I was really hurting. Just signed up for weight watchers too so hoping that helps.
So sorry to read about your flu and reactions. Im glad you are feeling a little better now…what state are you in? Hoping you are enjoying this nice unseasonable weather we are getting!
AmyAzzy said,
March 19, 2012 at 4:02 am
I was diagnosed with the Parvo virus just over a year ago. For about a month I was in extreme joint pain, exhausted, and lost my voice. I started seeing a naturopath regularly who is doing the NAITs treatment and I take minocycline and prednesone as well as Naltrexone. I feel pretty back to normal most of the time with some joint flareups on occasion. I am 39 and very healthy – eat well, jog and exercise regularly. I never got my voice back. I went to several different doctors and we suspect tissue inflammation because it coincides with my hands hurting, but my vocal chords don’t have cysts and move normally.
Has ANYONE else had this happen? I now have a raspy voice. I am going to try Acupuncture next.
Luna said,
March 19, 2012 at 12:16 pm
Hi Amy,
Yes, I lost my voice twice last year…. It was scary…bronchial issues/cough/etc….ended in no voice-2 weeks
Dr.s didn’t help (or really care)….. “not strep/some virus…”
My voice is now normal- but I have many other challenges that we are currently working on-
One thing I have heard, for others like “us” – steroids are harmful in the long run- be cautious- and research-
Off to Dr.-
Best to you-
Charlotte said,
March 23, 2012 at 4:40 am
Some good news. My cardiologist put me on beta blockers to try and reduce my tachycardia. I can only take a low dose because my blood pressure is normal, so a high dose made me pass out. But it is working – so far! My HR has dropped significantly and (so far, fingers crossed) some of my pain symptoms have eased. I managed a bit of yoga earlier and actually found my resting HR to be HALF that of two weeks ago. The tachycardia is thought to be caused by the parvo which damaged the cells in my heart (sinus node). Worth looking into if you have high HR and abnormal response to exertion. Still early days tho… 🙂
Luna said,
March 24, 2012 at 12:40 pm
Quick update as a warning-
Found a new Dr. that was willing to try to get to the bottom of challenges- upon visit- my blood pressure was 173/110. The whole visit was immediately centered on that and possible infection as a cause of many challenges parallel to Parvo (still questioning Lyme). Was already on a week of Doxy- and got more on visit.
I was prescribed Lisinopril for the BP and sent to a cardiologist. After day 2, I started to feel a tad odd and thought I would “hang in there” with the med- as everyone was concerned. (Dad-3 heart attacks, 2 bypass, stroke). Upon driving to the Cardiologist on day 4/ 4th pill of Lisinopril- I began feeling like I was going to black out- left side of face went numb and I pulled off immediately to let symptoms pass- they didn’t. Sister stayed on phone with me- ended up going to ER by ambulance from side of road- re: face- thought Bells Palsy, etc…but face back to normal immediately- but felt in and out and couldn’t really sit back up.
ER too busy-(all other ambulance rides bypassed me for a long time) so after I could finally get up- I had a nurse remove needle and left- really didn’t want to catch ANYTHING else while many sick people passed me for 1 1/2 hours. At home- arm started hurting – odd symptoms- and found bruise on leg (no reason at all)…..researched after all the drama and rest- and found that Lisinopril was indeed the culprit. I found horror stories on Lisinopril all over the internet.
I know I don’t write much- due to exhaustion and trying to find a cure- but I wanted to warn everyone. Ironically enough- Dad said that he is taking it……
Tired now- wearing heart monitor and supposed to start Amlodipine today. Does anyone have experience with this drug? They all have side effects and they all scare me. I read about flushing with water to help bp drop- so upping the water now.
Brighter side: I am walking better and can use my hands better the past few days…hmmm- Doxy??
Health and Healing and Safety to all-
Luna
serenamuse said,
March 25, 2012 at 3:28 am
How terrifying! I can only say that I find I have to be so careful taking anything now – I am super sensitive to drugs and so avoid as much as possible.
Mary said,
March 25, 2012 at 2:56 am
3 of my family members have been diagnosed with the parvo virus. I believe now that I’ve been suffering from this. When I went to the dr they tried to give me anti depressants. My regular dr won’t be back for a couple of weeks but i’m asking for the test. I have been blessed with good health my whole life up until now. I try and eat right, workout regular and rarely have missed a days work due to illness. When this came on I totally felt like I was dying.
-week long head ache, I never had a head ache for that long
-joint pain, in different joints from day to day, told my dr, how can I get arthritis this bad overnight??
-muscle pain, felt like my muscles would take turns being tight from day to day.
-my facial muscles also got tight, sometimes tingle, sometimes I felt numbness and sometime got twitching(not fun!)
-anxiety was very high because I had no idea what might be wrong and the internet was just scary!
-The neck pain was terrible. Sometimes felt like nerve pain?? Also, sometimes felt like some kinda spasm in my neck that didn’t hurt but almost like air being shot up my neck. Anyone else have the face sensations and neck stuff??
-My tongue hurt at times too.
-My lymph nodes never swelled but throbbed under my arms at times.
-numbness and tingling in hands that came and went.
-when it first came on I definitely felt like I had the flu.
-sleepless nights due to worry.
Now my dr tried to tell me this was mostly stress related??
I am 39 and have never had an anxiety issues.
serenamuse said,
March 25, 2012 at 3:25 am
When I hear about doctors like yours it makes me so angry and yet there are so many out there. When they can’t come up with a proper diagnosis they just blame stress. I was told to take a yoga class and join the PTA. The bottom line is that they don’t know the answer and are not humble enough to admit it. I have had all of your symptoms. It sounds very much like parvo. Having the diagnosis will not give you a treatment, but will at least give you a cause. Listen to your body. Don’t push it! Cut out all refined sugars, packaged foods….best of luck!
Mary said,
March 25, 2012 at 3:02 am
I want to add that this went on for over 6 weeks and the dr advised me to keep working out so I tried desperately to do that until finally I just couldn’t. He said it would help my anxiety?? I now feel much better, thank the Lord!! But my dr was no help to me. Had my sister in law not come down with this I may have never known what to ask the dr to check.
Amy said,
April 9, 2012 at 10:02 pm
Hello! I was just diagnosed with the Parvovirus a few weeks ago. I am a 34 year old elementary teacher. I had been getting sick quite often. I had bronchitis 4 times over the course of a month and a half. I ended up taking 4 different courses of prednisone and 4 different courses of different antibiotics. My doctor kept telling me that my immune system was down and that I kept picking up different viruses. After having the bronchitis for 4 weeks, I ended up getting flu-like symptoms including a fever. My doctor had given me meds for my stomach issues. I requested blood work even though he didn’t feel it was necessary. He called a few days later to say that I had tested positive for the parvovirus He told me that this is why I kept getting sick. He said that there was nothing that I could do…that I had to wait it out. He said that I could take anti-depressants for the days I feel exhausted. I chose not to take that route. He said that I would continue to get sick from time to time, but I should be better in a few months (by summer). After reading some of these posts, I am worried that this never truly goes away. I’ve been feeling absolutely exhausted lately. My joints hurt from time to time too. I had thought that it was all because I had just joined the gym and my body was adjusting. I had also worried that it was depression. If the fatigue continues and the aches continue, I’m going to call my doctor although I don’t think he’s going to offer any advice. I’m glad that I found this blog! Any advice/suggestions???
Bonnie said,
April 16, 2012 at 11:33 pm
I am recently diagnosed. I am so glad I found this site. I am struggling and there is so little information out there.
serenamuse said,
April 17, 2012 at 5:03 pm
Bonnie,
I’m sorry you are struggling. I hope the site can offer you a little information. There has been some progress made over the past few years. Most websites now admit that it can be a long term, serious condition. It can be quite a struggle just to find a doctor that will confirm that, and not make you feel like you are depressed and just need to take a yoga class. We have a great community of people who post on the site. If you have specific questions they may be able to give you some direction. Best,
Serena
Bonnie said,
April 17, 2012 at 11:50 pm
Thank you so much Serena! I have only had symptoms since Feb and not near as severe as many but it has certainly effected my life dramatically. My Dr diagnosed me kind of a last resort , so at least he believes something is wrong however, he really has no clue what to do from there other than rest. After reading this blog I have no doubt this is what I have.
I was so grateful to hear other people describe the sensation of water or electricity running through their body. I described it like my body is humming. My Dr just laughed and said that was a new one for him! I am trying to keep my spirits up about the whole thing and praying for short lived symptoms.
I would like to know what supplements work the best. I read a lot of people had good results with B12 shots.
I eat fairly healthy and have increased my fruit and veggie, protein intake and trying to stay away from carbs. Any foods to avoid?
Thanks Again !
Nichole said,
May 17, 2012 at 4:46 pm
Bonnie,
You are right – there is so little information out there. I guess the best thing we can do is be our own advocates! I am relieved I found this site as it eases my mind and reassures me that I am not crazy!
mary thompson said,
April 17, 2012 at 5:48 pm
I have the virus but they can’t tell me when I had the active virus. My sister in law tested positive for the active virus and that’s what prompted me to check as I had many of the same symptoms. My dr fist said stress, then maybe MS because I had numbness come & go (in face too) but he won’t do an MRI as I was only sick once with some lingering stuff now. Help, anyone have tingling & numbness in face?
mary thompson said,
April 17, 2012 at 6:58 pm
I had all the joint pain and other symptons my sister in law had but she didn’t deal with many facial sensations. My dr said Parvo only causes joint pain. That’s where he lost me
Cathy said,
April 17, 2012 at 9:42 pm
hi Mary…. you can sure be hopeful that your symptoms will go away.. you are in the beginning ( right) .. so hopefully it will go away 🙂
I have face pain…. tingling/ tighness/achey not numbness! The strumming.. or some one explained the Parvo feeling as a river running though the body…??? I have numbness in hands and feet..sometimes???
Like Serena said the dr. think that were are crazy…. go to Yoga… my GP has been really good.. I have found that if I reference the fact that I have autoimmune issues, Dr.s are more willing to listen.. I say Parvo and they tune out.. as they do not like to not know what your talking about 😦
I have or had all the symptoms you talked about a few posts ago… I NEVER had anxiety… either (before Parvo..3 years now) .. and of course we get down/ perhaps not depressed.. but I get sad…because the Dr.s can’t fix our problems! I agree with Serena’s ongoing advice to eat healthy….!!! Hard as that is!!! I havve stopped Glutin/Eggs and Dairy.. still have pain and aching.. ‘m not so bloated though!!!
Best to you and your sister in law… 🙂 Cathy
I’m reading a GREAT book called from Fatigued to Fantastic… awesome… from a dr. that had/has Fibro lots of great info!!!
Mary said,
April 17, 2012 at 10:12 pm
Thank you so much for the feedback. I certainly don’t want to go on & on about pains like asked not to but i’m confused as to what parvo can do as the dr said it could only be the cause of my joint pain(that’s now gone). In the early stages I experienced the river feeling you described. I feel so much better but I get tingling in my face at times still and have had numbness come and go in the places you described but mild. My sister in law also had the same stuff in her extremities but practically nothing in her face. I just wasn’t sure if it could affect ur face. My jaw joints even hurt during the initial weeks too. Thanks again and prayers for my parvo peeps.
Chaundra said,
April 17, 2012 at 11:45 pm
It’s unfortunate that your doctor is not better educated on Parvo virus. I do not have tingling in my face, but it is present in my forearms and hands periodically. My worst symptom is my chronic, intense daily headaches and fatigue. It has been shown that Parvo can cause meningitis (leading to headaches) and neuropathies as well as a myriad of other symptoms. Be an advocate for yourself and seek out someone who will listen and help you to manage this. Best wishes for
a recovery!
Momma said,
May 7, 2012 at 4:41 am
Did anyone else have trouble with a stinging feeling on the tops of your feet? The drs thought I had a torn ligament at first due to the swelling , so they told me to keep my feet elevated. That did make them feel better but as soon as I put my feet back down on the floor the blood would rush into my feet and turn my feet red, then purple ,and then almost black and the stinging feeling was almost unbearable. I also tested negative for everything except parvo B19 and my inflamation tests were high. They put me on a steroid and I finished it about 3 weeks ago thinking I was going to be better now ,but about a week later my ankles swelled slightly and this week the stinging is coming back.(not as bad as before …so far…) I am also sure that the drs dont really understand what this viris can really do. Its something that needs to be studied .
serenamuse said,
May 7, 2012 at 2:39 pm
I had so many bizarre symptoms, most of which went away, or nearly when I went vegan – like the restless leg syndrome which was so bad.
Charlotte said,
May 13, 2012 at 5:51 am
The nerve pain that I get in my forearms, hand, shins and feet has been particularly bad today. I have been trying to think of something that I have done today, or not done, that might make this worse. I realised that I forgot to take my B12 and D3 this morning. Has anyone been to a neurologist for a nerve function test. I have been told the wait list is very long, and it is quite painful, so I am hesitant.
Nichole said,
May 17, 2012 at 4:31 pm
I would first like to say that I appreciate everyone’s opinion and sincerity throughout this blog. I am 24 and was diagnosed with parvovirus approximately one year ago. It was after I completed my first year of graduate school when I noticed bizarre symptoms that were so unlike anything I’ve ever experienced. I am an active person and I am normally very healthy. After my semester at school was over, I noticed that I was extremely exhausted – I would get tired so easily. Then I began to experience pain in my joints. At first, I thought this was from walking too much/running too much. The joint pain became so severe that I could barely walk. This went on for about a week and I was convinced that I must have pulled a muscle or something. However, I woke up one morning barely being able to move. I was sweating uncontrollably and couldn’t get out of bed. I called my mom right away in a complete state of panic. She told me to go to my kitchen to get some water and to take my temperature. This was easier said than done since I had to crawl across my apartment to the kitchen. I couldn’t stand. I live in Chicago and my family lives in a nearby suburb, so my mom was able to come pick me up and take me to my internal medicine doctor. This doctor dismissed my symptoms as a virus and told me not to worry. I was convinced that it couldn’t be a virus – this was too drastic. I requested to have blood drawn and the labs came back normal. On paper, I looked fine. Contrary to those results, my joints were swollen, I was pale, and I was extremely weak. The doctor insisted that this would go away. After one more week of being immobile, my symptoms became worse. I was in too much pain to walk or stand; it got to the point where my brothers were carrying me to and from the bathroom. My mom had to help me go to the bathroom as I could not sit/stand without her assistance. We finally got so scared that my parents took me to the ER. The ER doctor admitted me and I stayed in the hospital for 5 days. Blood was drawn multiple times a day, especially when my fever went above 102. No one could figure out what was wrong with me, but they kept me in the hospital for this lengthy time. I was finally able to leave the hospital… with no diagnosis. For about 2 more months I was still in excruciating pain. We decided to go to a rheumatologist who finally diagnosed me with parvovirus. Upon receiving this news I was relieved to know that there was a diagnosis out there for me. The uncertainty of the label of “it’s just a virus” was driving me crazy. My symptoms finally cleared up after 6 months. I was feeling fine for a long time until I recently began to experience increased fatigue and joint pain again. This began to occur almost exactly one year later after my original episode. I am becoming nervous and hoping that this is not going to plague me for the rest of my life. However, by the stories that I read on the blog, it seems as though this is something that is constantly reoccurring for many people. I appreciate all of the stories that were shared on this blog. I am sad that everyone is going through this pain, but I’m glad to know that I’m not alone. Thanks so much, everyone.
serenamuse said,
May 17, 2012 at 4:36 pm
Nichole,
Your story sounds so familiar. I too felt well for a year after the initial episode then it all started again and I’ve been battling it ever since. The only thing that has really helped me was a whole food, vegan diet. I am not cured, but can function on a much higher level. I will never underestimate the power of a virus again!
Nichole said,
May 17, 2012 at 4:39 pm
I have actually considered switching to a vegan diet. I’m gradually eliminating several food from my diet – such as red meat and certain cheeses. I have also noticed that how much sleep i get also predicts how I feel. Do you mind telling me how long you’ve been dealing with the virus overall?
Marla said,
May 23, 2012 at 9:02 pm
I first became ill back in 1996. My 3 children all had this strange rash and the doctors called it fifths disease. We had just left California for a move to Pennsylvania. I awoke to severely painful feet and could not walk down the stairs. This was followed by heaviness in my arms and terrible fatigue. I continued to have strange blotchiness on my hands and feet. All sorts of blood tests were done at the time. They suspected lupus and Lyme. They even did an HIV test. All negative. I did test positive for Epstein Barr Virus. I felt horrible for months. I found out through a friend to start watching my sulfites as she thought I was allergic. After reading all my labels (they were in a granola bar I ate daily) I started to be sure not to knowingly eat foods with them as a preservative. I changed my diet and exercise to an extremely low fat low calorie diet. I felt great! Rarely had an episode unless high stress or crazy restaurant food.
About 6 weeks ago I felt like I was having a heart attack, numbness in left arm for two days, palpitations, chronic fatigue. Day or two feeling good and then whammy! Last couple weeks my ankles are so stiff I can barely walk and bottoms of feet hurt into my heels. Hands ache a lot.
Very sadly, last year we had a grandchild die at 5 months in the womb, they said it was hydrops, my DAughter in law asked if my son ever had fifths disease. They are on a military base, had just moved to Hawaii. I wasn’t around her when she got pregnant but she could have been exposed elsewhere. Are we carriers of this if we have it and is anyone else at risk?
I am waiting to go back to doctor (insurance had to come through) I was treated like I was crazy back in 1996 and hate to go through that again but don’t want to overlook something else and think it is just a flare of this.
BTW…I don’t recall a test for parvovirus b-19 at the time. It was mentioned by a friend, however. Only the Epstein Barr.
Has anyone else had this for this length of time? Besides the chest pains and swelling in hands and feet, it has been pretty much under control until now. My family is worried sick because this isn’t like me not to go, go, go.
serenamuse said,
May 24, 2012 at 5:11 am
First off, I would not worry about having possibly given this to your daughter in law. Parvo is so prevalent that she could have picked it up anywhere. The majority of people have been exposed to it at one time or another it is just the rare few that have chronic issues. From what I have heard about Epstein Barr though, you don’t really need to blame Parvo, you have every chance of it being the Epstein Barr. I have known people to have chronic issues from that as well. Knowing the initial cause does not offer a cure though. Sadly.
Michelle Gellman said,
July 15, 2012 at 8:43 pm
Should I list my symptoms? Or what the MANY diagnosises the MANY doctors say I have? Natural medicine doc calls it CFS. My regular doc says fibro. I KNOW I had 5ths disease as a child. And Chicken Pox when I was 12. Tonsils out at 19 y.o., they waited WAY to long to do THAT surgery, they were infected since I was 4!! I had a Traumatic Brain Injury at 4 and my tonsils being inflammed is NOTED in the nursing notes.. Overactive bladder at 23, Interstitial cystitis at 26, as well as irritable bowel a year or two later. GERD at age 21. Gluten free since 27 on the advice of a qi gong therapist! Also Dairy free since October. I ate eggs today… NOW I”m feeling WORSE!! PLUS the lacy rash in on my hands RIGHT NOW!! Advice for a good doctor in NY state, I live in Rochester and don’t drive. I have NY Medicaid. Advice for blood work I need to have done is GREATLY appreciated!! Right, also have estradiol imbalance and osteopenia. I turn 35 on July 27, 2012. HELP, I feel SO TIRED today!!
Bonnie said,
July 16, 2012 at 1:47 am
I am so frustrated. I have been sick since February and feel there is no end in sight. I was making progress and then this last week has been especially difficult with increased aches and fatigue. It’s so hard for people in my life to really understand how hard it is to get through a day. I just started Lyrica so hopefully that will give me some relief.
Risa said,
July 16, 2012 at 4:34 am
To all Parvo Suffers – Update and Suggestion,
Have you been tested for lyme disease by a reliable test? Risa here, mom of the son with the chronic tension headache(feels like concave pirate eyepatches pressing on his head and spongy feeling), fibro symtoms, brain fog, chronic fatigue, broken immune system, tension seasonal ups and downs, ebb and flow to illness. Our son was diagnosed with past parvo last fall. So many of you have encouraged us and I have been so grateful for this group so I want to update you on J’s diagnosis.
We ended up with J in ER in May with a bacterial infection. Later in the week we followed up with Dr. Gray. He hesitated and then told us we would think he was crazy but he would like to rerun the lyme test. The cheap lyme test in the doc’s office is based on European Lyme not in the US apparently. They reran that test and the test though Igenix Labs in California($200). This test takes about 3 weeks to get results but more thorough. That being said a negative test is not necessarily indicative of an accurate negative diagnosis. Illness ebbs and flows and may take several tests.
Any way, J. came back with 5 bands of lyme on both tests. Different ones on each test. Our doc has done a lot of research into Lyme Disease and finds that there is reason to believe that the auto immune illnesses are actually lyme and that is goes to the weakest part of each person. So my fibro is probably lyme – I am going to be tested and find out. He believes lyme can be passed from parent to child and that a past tick bite can sit dormant until say… J. got so sick at illness onset in Nov 2009.
He asked us to do our research and get back to him in month. We are not inclined to believe that the long intense course of antibiotics to the thresh hold of toleration is going to be the route we want to take. We are not excited to see further damage to compromised immune system. We are in the process of investigating alternative treatment options.
Sources doctor recommended:
-Cure Unknown: Inside the Lyme Epidemic by Pamela Weintrab
-Everything You Need to Know About Lyme Disease and Other Tick-Bourne Disorders, 2nd Ed. by Karen Vanderhoof-Forschner
Web:
Treatlyme.net
Ilads.org
Watch movie: Under Our Skin @ Hulu.com or Netflix.com
As the deer population has exploded in the last century as we raise more of our meat, Lyme is throughout the US.The CDC doesn’t recognize it as being in our state but the insurance companies are paying for treatment. Just want to encourage you not to rule lyme out without some further investigation.
Blessings!
Risa
Luna said,
July 16, 2012 at 12:09 pm
Risa!
Thank you so much for sharing this with everyone, and potential newbies…I began a detailed response last eve as well and it disappeared…I gave up until this am. 😉 Serena is familiar with my “feelings” as well….
In short- yes, many that have chronic parvo symptoms/chronic “parvo” also have Lyme- they are finding that these are common “co” infections- among many others….also- immune related similarities from having/being exposed to so much ie: chronic tonsillitis, EBV, Herpes Viruses, etc…. it is believed by many in the medical field that CFS, Fibro, and many others are actually chronic Lyme…
We have come a LONG way- to get the word out- and this Tuesday could be groundbreaking- if you are able to watch/listen- please do so- as the more that people tune in- at least stream- the better it is…. and, many of you may find that this is your story….
http://lymedisease.org/news/lyme_disease_views/global-impact-lyme.html
I highly suggest those in question and suffering see an LLMD/Lyme Literate MD, you can get a list from ILADS.com. and check out the resources on Risa’s post- if you have not watched the movie- that is a MUST.
I lost 3 1/2 years of my life, my career, my master’s program and “me”, due to me thinking I had the worst case of “chronic Parvo”- even with my reading/researching DAILY- I am ashamed that I deed not heed the advice earlier-or have the mental clarity to even “hear” it…..that I never thought that those silly little infections from my tick bites were anything to be concerned about…”If I can survive Parvo, I can survive anything….” ;(
Risa- side note- the antibiotics saved my life- I reached do or die- I also did not want to stay on them- so I switched to a more holistic approach. I don’t know if I would be here if I did not stay on them as I did- I was one of the “lucky/blessed” individuals. I switched over at 3 months- many stay on for years…..
I have read this so many times on here and other blogs- and Jan has awesome advice- DIET IS HUGE- for many it’s EVERYTHING. I still see others suffering terribly because they still eat sugar. Really- NO SUGAR/ALCOHOL/SIMPLE CARBS/STARCHES/ETC…
Peace, Love and Healing to all….
Luna
I will continue on another post…
Luna said,
July 16, 2012 at 1:04 pm
Ok- I know this may echo what others have shared- but, here is “my list”. In lieu of writing a book ;), I have simply listed…I have gathered from other sufferers, Dr.’s (LLMD’s), holistic, etc…. the following, in combination with NO drugs/smoking, alcohol, sugar, most carbs/starches (think natural/organic/off tree-out of ground- natural form;) My “treat” is coffee- many can’t do this- but, it is my only treat… and- I do “do” raw honey…some say absolutely NO dairy- even tho’ that is where my ethical/moral standards are- I do a little organic…
I am not 100% certain that my very rare flares may be connected to this- but, it is HIGHLY likely…. or the few tomatoes that I allow now- (night-shade).
I welcome anyone to please comment/expand on my sharing. Open the line of questioning with others….
*Green Vibrance- Vibrant Health
Sacchraromyces Boulardii-Jarrow
Multidophilus 12 20 Billion-Solaray
Grapefruit Seed Extract-Nutribiotic
Olive Leaf Capsules-Gaia
Teasel Root- Forever Health
Acetlyl L Carnitine-Jarrow
Magnesium Malate-Source Naturals
Spirulina
Resveratrol- Age-Less Trans-Resveratrol- Bluebonnet
Glutamine- Jarrow
Alpha Lipoic (not taking until amalgams are removed- a chelator)
Q10
D3
C (crystals) 3-5,000 mg/day or pills/ I take both
Selenium
Multi-B Complex-Bluebonnet
Methyl B-KAL
Methylfolate-Solgar
E
Flax Oil
Coconut Oil
Annato Tocotrienol (to buy)
N Acetyl L Cysteine (to buy)
**Physical Therapy (when I got to the point where I could move/walk)
Daily- yup, daily- some I do miss- but for only a day. As, I am literally popping all day and it is hard/exhausting, but, I AM ALIVE, and pain free, functioning, walking again, using my hands, no joint flares since beginning- Green Vibrance- Resveratrol- Glutamine-Teasel-Olive-Coconut Oil- high C- (BARUCH HASHEM;)
I hope this helps at least one person on here….
Peace, Love, Light and Healing to ALL!!!
Luna
Luna said,
July 16, 2012 at 5:48 pm
Hmmm- I wrote a long part 2- Serena?
Luna said,
July 16, 2012 at 5:50 pm
Ahh- sorry- cookies 😉 please delete!
Jeepers said,
July 21, 2012 at 3:02 pm
Luna…I have so many questions for you. Can I privately email you?
Bonnie said,
July 29, 2012 at 9:44 am
I have been dealing with Parvo since Feb 2012. Many people have described a feeling of water rushing over them, electricity going through their body etc. I describe it has humming. But lately it has gotten so much worse. I feel as if my body is pulsating. It is constant and of course when I am lying down and quiet it is all I can feel and think about.
My Parvo levels are low so the Dr has been sending me for other tests and so far everything is normal. NORMAL?? ….I have not worked in 3 months. The fatigue is horrible. I feel like I have the flu and I am exhausted all the time. The major joint pain is gone but my whole body still aches. I started taking Lyrica and that helped decrease my aches for a few days but symptoms are increasing again.
I had a complete hysterectomy 2 years ago and started taking HRT because my body went screaming into menopause. And I have been under a lot of stress since then as well. I know this has to be all related but it is a such a fractured puzzle.
Has any one else experienced this electricity, humming feeling to this extent. I feel as if my body is screaming at me. I know my body is trying to tell me something.
Bonnie
Cathy said,
July 29, 2012 at 12:22 pm
Bonnie.. so sorry to hear of your troubles. I have the Electricity running through my body… ALOT. the severity comes and goes… the areas change day to day! I do believe that it has something to do with the nerves ( but that is just my thought)
I have been to numerous dr.’s.. though the mayo to Colorado/ Dr. Melamed.. and really no answers for 3 1/2 years. They did tell me that I have nueopothy in my Arms? I have indoor outdoor allergies and Food allergies, that can make a person feel rotten as well!!!
I understand the Flu like feeling and Fatigue, all to well, what really gets me is the achy, sore, weak muscle feeling, I notice it most when bending down to pick something up ,going up stairs is really bad, I feel completely exhausted for 30 seconds- to a minute?? And the brain fog.. I just can;t remember things!
I wish that I could figure out what brings on the symptoms or makes them worse, the weather, my activity level, the food that I eat, it is so hard!! So every day is an adventure!!
My best to you!!
Oh I have tried many meds that the Dr.s have recomemnded ( I did not try Lyrica, to many bad side effects that I read about) I do take Motrin and Vicatin when needed and that seems to help the achy neck/shoulders that best!!
Cathy
nicholegee said,
August 2, 2012 at 2:20 pm
Bonnie,
I was diagnosed with parvo 14 months ago. I started to experience the wave/rush of electricity about 6 weeks ago for the very first time. It eventually went away after 5 days. Since then, the joint pain and fatigue has become worse. I’ve even noticed an unexplained weight gain, no matter how much I work out or watch what I eat. I think the electric feeling was indicating that an episode was about to happen. Sure enough, the joint pain settled in for a while. I’ve also noticed an unexplained weight gain. No matter how much I work out or watch what I eat, I keep gaining weight. The doctors insist my thyroid is fine… I know this all has to be related to the fatigue and constant joint pain. I met with a rheumatologist 2 weeks ago who is wonderful and is the only doc who hasn’t treated me like i’m nuts. She was the FIRST to say, “This is not normal.”
My best advice is to listen to your body and keep trying to find answers. This blog provides so much reassurance and support. I’m glad I found it.
Bonnie said,
August 3, 2012 at 12:23 am
Thank you for the support. No one can truly understand unless you are experiencing it. I have an appointment with an endocrinologist next week and a rheumatologist the end of Aug. I hope they can shed some light on this. My PCP just does not know what to do and is getting rather frustrated. The electricity feeling ebbs and flows with intensity but has never gone away since March. It has a lot to do with my activity level, which has been very minimal. since have not been able to work since March. I have increased my vitamin intake and have found some relief with B12 shots. I have also cut out carbs and eat protein and a lot of fresh fruit and veggies every day. I am so glad I found this site too !
Leslie said,
January 22, 2013 at 9:11 pm
Hi, Bonnie… Yes, yes, I’ve experienced this every moment of the day. It’s the first thing I feel when I awake and the last thing I feel before going to sleep. Unfortunately, this is only one of my many difficult symptoms of this virus that continues now after almost two years. I have often said I feel my body’s been “invaded.” In the very beginning when I described this to my doctors and they started counseling me about stress/anxiety, I thought, well, ok, maybe I’ve just lost it! But my confidence in my own sanity is firm and I know this is caused by the parvo. It helps having others describe it. I have described as an electrical or buzzing feeling literally through my whole body. Seems even among the many here with weird parvo stuff, this is a bit different than most.
mary thompson said,
July 29, 2012 at 12:07 pm
Bonnie I had the humming and water rushing feeling. The humming persisted too. I still get it from time to time. I’m sorry your dealing with all that. I get MRI results tomorrow and I want it to be normal. I tested positive for parvo but not the active virus 6 mos later they are finally willing to run more tests to try and rule some other things out. The humming definitely was worse before bed. I had to take panic attack medicine to help me fall asleep. It did help until it eased up. I have no history of an anxiety disorder and have only taken it when symptoms were @ there height. Have you tried that?
Bonnie said,
August 3, 2012 at 12:27 am
I agree the humming is so much worse when I go to bed. But I feel that is only because it is quiet and I having nothing else to focus on. I usually try to stay up until I can not keep my eyes open so that when I go to bed I fall right to sleep. If not that feeling drives me crazy and I need to get back up. How were your MRI results?
Jeepers said,
July 29, 2012 at 2:06 pm
I know the running water feeling too well and sometimes I get that electric feeling in my head. For me personally the parvo has affected my head the most…headaches, brain fog, dizziness, light headed ness and a tremendous amount of unannounced anxiety. I do have leg and arm aches but not to the extent of some others. I’m currently receiving ivig 1x a month. So far ive been on it for 3 months. it is helping my leg pain which is neuropathy. Can parvo cause nerve damage??? It definitely can!!! I’m proof of that. I have brain demylination(damage to the myelin sheath that protects the nerves) from this infection. I also have many sensitivities I’ve never had before..mainly to antibiotics, caffeine and sugar. Some drs will say there is no way parvo can do this while others will say it can.
I’ll keep you posted as I go through treatment. I’m also going back to a dr on Friday that deals with chronic illnesses so I’ll post anything that may be helpful. She fully supports that this is a viral infection gone wrong so we shall see.
Cathy said,
July 29, 2012 at 3:32 pm
Jeepers… Dr. Melemed said yes that I have the positive blood work for the Myelin Sheath as well… not a sign of MS thankfully I guess???
I to have the head pain. comes and goes.. back of the head/ neck.. electricity.. headaches… as well… and I to beleive that since my parvo diagnosis.. I have become VERY sensitive to many things… as well!!!
So you were able to get IVIG… wow that is great.. so not a substation improvement so far with it?
Best to all..Cathy
mary thompson said,
July 29, 2012 at 2:23 pm
Thx for the info! Please keep us posted
Bonnie said,
July 29, 2012 at 2:28 pm
Thanks for the feedback! My Dr looks at me like I have two heads. I need to get back to work by Aug 23 or I will lose my job. This is so frustrating. I am going to try an Endocrinologist next. Not sure where to go from here.
Cathy said,
July 29, 2012 at 3:36 pm
Bonnie… I have had Many Dr.s look at me that way to!!! The last Reumatologist that I saw in the spring.. said.. Sorry we really can not help you, the only thing is Medications.. the Class Of lyicas, and whatever other ones she mentioned
( surprise I can;t remember ) Take Care…. I wish that I had better info for you!! 🙂
Jeepers said,
July 29, 2012 at 4:12 pm
Cathy, did you have MRIs of your brain done? That is where the demylination was present which brought me to an ms center. Thankfully I’m seeing a world renowned ms specialist who doesn’t think it is ms but he has seen cases like mine before. It is suspected to be viral. He is the one that has put me on ivig for a minimum of 6 months (1x a month) and he says that is the only thing that seems to help people in my situation. I haven’t seen much change but I know ivig can take a while and my nurse gives me hope. She just closed an ivig case for a guy that was on it with similar complaints. Fingers and toes crossed!!! But yes Cathy, so glad it doesn’t look like ms. Has anyone mentioned lymes to you as well??
Bonnie…lots of luck. Maybe you will have better luck than I did. Endo told me I was depressed and rheumotologist told me to take fish oil and change my diet.
Cathy said,
July 29, 2012 at 9:41 pm
Jeepers,
I have been tested for Lymes.. 3 or 4 times and negative all those times, the rummy did say that at the intervals that I was tested, she was certain I did not have it!
I did have a MRI at the Mayo, and all was good?
Where do you doctor, with the MS Dr.? Even if you are not noticing much improvement with the IVIG now… in the long run it is sure to help! So did the person that finished IVIG, have parvo or just similar problems?
I will cross toes and fingers for you. I have been doing NAET, and it seems to be going well so far!
Take Care
Katie said,
August 4, 2012 at 1:23 pm
Hello to all! Just a few comments and a question… This blog has helped so many of us understand and feel a sense of this awful virus…thank you Serena… It helps so much to know that we are not alone!!!! Has anybody had any luck with a muscle biopsy? My doc. has talked about it since last year….I am having it done in a two weeks..Nervous because like most of you….all the “other” tests like EMG, EEG, EKG, MRI, Brain holter study, heart holter…all come back negative. My parvo numbers are off the chart, and ws just retested.. I once was hopeful that one or any of those tests might give a clue as to how to help relieve these symptoms….
I realize the biopsy may not help at all, but at this point I am willing to try…Anyone had any experience with this? Thanks very much and wishing you all a peaceful day!
stef said,
August 6, 2012 at 4:01 am
does anyone have a houston area dr that beleives in parvo and knows what it is??
Charlotte said,
August 11, 2012 at 5:38 am
I just had some oral surgery and the burning / nerve type pain in my forearms and lower legs has flared up big time. I guess it is a reaction to my body being under stress trying to heal itself. I hope it doesnt last too long. I want to get this looked into as it never really was. If this is the reaction I have now to minor surgery, how am I ever going to have a child, or anything like that. Would I be best asking to see a rhumatologist, or a neurologist? The Elavil and B12 only help so much. It gets so bad at night it is unbearable.
Chronic Adult Human Parvo - Doctors, illness, diseases, nutrition, sleep, stress, diet, hospitals, medicine, cancer, heart disease - Page 6 - City-Data Forum said,
August 28, 2012 at 8:04 am
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Charlotte said,
September 16, 2012 at 6:02 am
Been referred for a nerve conductivity study (EMG?). Is it painful? Will they even be able to do anything if they discover nerve damage? Probably not. 😦
mary thompson said,
September 16, 2012 at 10:06 am
Yes, they can prescribe something that’s worth a try to help you to feel better. I was set up for that test and cancelled because I started to feel better so I put it off. Good luck to you.
Chaundra said,
September 16, 2012 at 8:31 pm
I posted in the Miranda Mission website about my recent experiences, so if others are on that site, you may have seen this. For those who aren’t, here’s some potentially helpful information. Within the last few months, I was referred (per my request) to an Integrative Medicine doctor at The Ohio State University Wexner Medical Center. His approach is non-traditional but is based on scientic peer-reviewed research. His name is Glen Aukerman and he is nationally known for his work. He has written the book Better Health in 120 Days. I suggest that everyone read it. His approach is to listen to your symptoms, perform a miriad of bloodwork and develop a regimine of supplements that work to alleviate symptoms. Based on my lab results, I have been taking supplements for the last 5 weeks and I feel better than I have in over one year of dealing with Parvo! The effects were noticeable within the first week. His approach is to work with you upon repeat visits to tweak your supplements to achieve optimal blood levels and symptom relief. He does this while also teaching you how to eat correctly to allow the supplements to work best. Ultimately the goal is to wean from expensive supplement use and allow the correct nutritional input from food to supply you with the essential vitamins and minerals that you need for you body to deal with the disease. He is a gluten free advocate I might add, but does not require individuals to only be vegetarian or to purchase organic food. I began the process with daily, often debilitating, headaches, joint pain, fatigue, tingling in my arms, as well as occasional bouts of tachycardia, and sleep disturbances. At this point, my symptoms are 75% relieved and I am so happy (so is my family). I will be seeing him for a 2nd visit in another week and will keep everyone posted on whether this approach continues to work. I recommend that everyone look into a practitioner in your area who may have a similar approach. Dr. Aukerman does work with out of state patients via electronic communication if needed, so that is also a route to consider. I finally have some hope in leading a more normal life again and that someone out there actually understands how to help me! I wish everyone success in their continued healing.
Cynthia said,
September 16, 2012 at 9:48 pm
Hi Chaundra-
Can you please post what your diet has been and what supplements you have been taking. While we realize that each individual system is different, it is helpful to be knowledgable regarding what has/is working for some others. Many have been on this path for a very long time, and there may be one simple supplement that was not a part of their list that could be helpful.
I am blessed to say that I am with you- although I also had Lyme and co-infections-which many have and do not realize. I was able to do it on my own with a little guidance and supp. list from a Dr. I have found that I have been able to help many. Others helped me along the way, and now I am so thankful to be able to give back. Thank you!
Congratulations on your healing-may it take you the other 25%!!!
Peace, Blessings and Healing to all!! L’Shana Tova!
Chaundra said,
September 18, 2012 at 10:13 pm
The doctor I am seeing has prescribed Fish Oil, Vitamin D, B complex, Cinnamon, and Magnesium at this point. These seem to be the most commonly advocated by him (discussed in his book), but he also discusses DHEA and has things like Kefir in his office. It’s the doseage that matters. I am taking pills 4-6 times a day (way more than the bottle would say to do) and this is based on my bloodwork. That’s why it’s important to do this under guidance! I am also cutting Gluten as it limits the absorption of some vitamins, limiting my “sugar”, (not just standard table sugar in items and sweets, but being aware of how others foods are processed in our bodies and broken down to create a “glycemic load”) and trying to balance Omega 3/6/9 ratios which seems to be a necessity for all of us in today’s American society. This all seems like information overload but I would not advocate for this kind of intervention if I was not seeing the benefits so clearly already. It’s a lifestyle change that took me a while to buy into, but it is definitely worth it!
Barb Archambeault said,
September 18, 2012 at 1:47 am
I live in SE CT and have not found a rheumatologist thats worth their weight in gold. I went to New Haven and Hartford, everyone said Oh thats stinks but we cant help you and refuse to give any kind of narcotic for the fear of 1) DEA 2) addiction. I can only take tyenol since I have a gastric bypass. Sometimes I just cry because I just want to be normal again. No more painful, swollen joints, etch. I went to NHI for their aplastic anemia study but since my blood test did not show what they were looking for. Can anyone help me find a MD that will understand Parvo and help w/the pain. I was infected by my daughter in 2009 and still have some symptoms.
serenamuse said,
September 18, 2012 at 2:16 am
I’m sorry you are going through this. I never have found a doctor with any solutions – only a naturopath who put me on a vegan diet. It isn’t a cure but the improvement has been vast.
Barb Archambeault said,
September 18, 2012 at 10:16 pm
The gastric bypass hinders me from taking most supplements and medications since anything orally indigested goes straight to my intestines, bypass stomach and most of small intestines. I find it frustrating that more doctors do not understand or what to learn about parvo in adults. I tried so many things I am at my wits end, plus I know have osteoporosis which came along w/parvo. I really need some to help me, I am also chronically anemic. I really desperate to find a doctor in New England region of US>
Cynthia said,
September 18, 2012 at 11:33 am
Hi Barb,
I am so sorry that you are going through this as well….
Serena is correct with diet, and as far as physicians- your best bet truly is to go with an LLMD. A “Lyme Literate MD”- you are in an endemic area, so you should not have difficulty finding one. They will be most understanding and willing to work with you. Feel free to do more research regarding Lyme and Co-infections and treatment on support sites such as this one. Common flare causes that you can completely eliminate today are: sugar, alcohol, and night shade vegetables- and gluten, simple carbs, breads, etc…. I would work on sugar immediately- it’s hidden in everything- some get extreme flares from just a teaspoon- and sadly enough not realizing it’s hidden in a “natural” purchase they just made. Read all labels….
There are many other great resources posted on this blog, as well as helpful hints. It’s a great group-
Best of luck to you!!!
Blessings-
Kristin said,
September 19, 2012 at 1:48 am
I’ve had chronic parvo for over 3.5 years now and I believe I am finally making progress in getting better. I’ve begun bio identical hormone replacement with getting the hormone pellets in my side. Also been working with a traditional Chinese medicine man who is doing acupuncture also. My pain level is the lowest it’s been in 3 years and I truly an showing signs that I’m getting better. I will keep everyone posted. I too have contacted and seen many many med doctors who can do nothing for me. I truly believe the holistic approach is how we are going to fight this horrendous virus.
Linda Turner said,
September 19, 2012 at 1:53 am
Hello old friends again! I first posted a year and 4 months ago when I first had Parvo. So almost a year and a half later after having NO painful symptoms… they seem to be coming back in my fingers, hand and ankle. Ugggg! And how can Dr’s all say this is over in 3 months? I’m sure there are sooo many misdiagnosis of other conditions that are just the residual effects of Parvo.
Of course what i’m going through now is a small fraction of the pain at the initial onset, but still annoyingly achey and I’m having to take Motrin to get it to stop.
Also if I type alot on the computer I can feel it in my hands.
So I wonder how long this will last? I had hip pain 2 months ago when I was in PT for my knees (early arthritis at 44 but my mom has had this for many years… genetic) and my hips started to hurt alot… anyone with hip pain? I wonder if it’s the Parvo and not the result of PT. I never had hip pain in my life!
What a pain! LIterally!!!
So nice to know I’m not alone…
Linda
Andy & Risa Johnson said,
September 19, 2012 at 2:32 am
Linda,
I would encourage you to see a well regarded chiropractor for help with the hip pain. Getting your body realigned over the next several months should really provide some welcome lasting relief. It has been greatly beneficial in our family. Blessings, Risa
cathy said,
September 19, 2012 at 7:51 pm
Hello Linda… yep I have hip/back pain.. seems to move around…. between shoulder blades…. to hips to low back.. and so on…..hands and feet usually are achy/ tight/ tingly….never know what the day will bring. I was diagnosed in april of 09…. symptoms severity comes and goes.
I have often wondered as well… what would I be thinking now if it wasn’t for this and other internet sites that I could reach out to when diagnosed, I was in tears when I found info on the internet…. about “PARVO” about 4-5 months into it, as I knew something was just not right!! I wonder if alot of the “Fibro… CFS and other autoimmune problems.. like you say could be from Parvo?????
My best to you!!
Cathy
Linda Turner said,
September 19, 2012 at 9:32 pm
Thanks Cathy! You too! I am a firm believer that that may be the case. If there was more awareness of Parvo maybe people could get the right help. I’m just thankful that my discomfort does come and go and it’s not that bad. Just annoying!! I think it all needs to be put in perspective… right?
Linda
Kristin said,
September 19, 2012 at 3:23 am
Yes I have hip pain especially at night. They can ache soooo bad it’s crazy…. God bless all of us:)
Stefano said,
October 7, 2012 at 5:37 pm
Dear all,
I m a 34 yo Italian male and I need to understand if my signs/symptoms have the inly explanation in Parvo infection. 8 months ago I started having muscle weakness (arms and legs) for 1 week. After 1 week I had same symptoms with sensitive alteration on my hands and feet. I had negative EMGs and negative infections blood exames. After 2 months of these symptoms I was tested for IgG and IgM as well as DNA on blood positive for Parvo. From that point, every two months I have severe muscle weakness, tremors both arms and legs, difficulty in movements (I feel like a robot, sometimes) for several days with sometimes little pain in my joints. Do you have any experience with this neurological/ muscles experiences related to Parvo infections? Now, my Drs had put myself on steroids but nothing is improving.. Thank you cery much you all. Really appreciate your help..
Charlotte said,
October 7, 2012 at 10:23 pm
Hi. Yes, I got Parvo in 2010 and have been left with burning / tingling pain in my forearms and lower legs (and hands and feet). I find Voltaren helps a little bit, and small doses of Elavil, acupuncture and heat packs. I am due for an EMG test (I’m on the waiting list).
Sorry to hear you are another victim of this horrible disease.
mary thompson said,
October 7, 2012 at 9:31 pm
Yes, I had all those symptoms and a few more. Numbness and tingling that came and went. I had an MRI to check for MS. Thankfully that was negative. I dealt with this for several months and was extremely stressed to find an answer. No answer to be found aside from a positive past parvo infection. I feel better but have mild symptoms from time to time. We’ll see how long it stays away. Good luck to you. This site is a comfort to me, to know I’m not alone.
Stefano said,
October 7, 2012 at 10:20 pm
Thank you very much.. It’s just so hard to experience this decrease in movements and muscles pain.. And I have noticed that my symptoms get worse if I drink alchool (eine or beer) and if there are some weather changes.. Don t know why.. Thank you very much again..
mary thompson said,
October 7, 2012 at 11:16 pm
I noticed the weather is a factor too. I have no idea why. I went through a spell where different muscle groups would hurt from day to day. I also had neck pain. I had muscle twitches as well. Joint pain too. Sometimes my hands would really hurt. I cut out processed foods as suggested and I did improve. At the height of my illness my tongue even hurt at times. I guess cuz it’s a muscle?? The whole thing was so scary. I began to think this was my new way of life. Who knows it may be but I’m feel’in a lot better at the moment. Has the Dr tried to give you any other idea as to what it could be?? I just never knew Parvo could do all this.
Stefano said,
October 8, 2012 at 7:24 am
Actually no.. I did not find a doctor really into Parvo. The last one put me on oral steroids but i m not improving at all. We ll see.. I reslly hope this is gonna end up.. Thank you all for sharing your experiences with me.
Tam Wedgwood said,
October 8, 2012 at 8:17 am
I would definitely recommend diet changes. That’s what really turned my daughter’s life around & we still notice that her aches & pains worsen if she starts eating less healthily. She caught Parvo as a little girl in 2000; still affects her now, but better than it was now that we understand the disease better. Doctors are still generally unhelpful & unknowledgeable I’m afraid. But take lots of vitamins (especially B complex) and replace refined carbohydrates with extra fruits & veg & extra protein.
Chaundra said,
October 8, 2012 at 6:23 pm
Agreed – Diet changes and vitamins are helping me the most. Not back to normal by any means but feeling 50-75% better on a regular basis is a huge step forward!
Stefano said,
October 8, 2012 at 6:46 pm
Thank you all.
But is there anyone who knows how long will take to have this disease definetely cured?
Tam Wedgwood said,
October 8, 2012 at 7:09 pm
I don’t think any of us can answer that. Some people seem to recover quite promptly, for others there are chronic complications that we really don’t know if they are going to be permanent or eventually go away.
I think that it’s complicated because symptoms seem to disappear for a while, then come back. Many people have cycles and flare ups & when it “stops” how do you know if that’s cured or just a lull before the next flare up.
I read that this virus was only discovered in the 1970s and doctors thought it was mild because at that point no one knew it would recur and still be coming back years later.
I also read that possibly it has mutated – maybe the 1970s version was milder & now some people get the unmutated form and they get better fast, & some people catch the worse mutant strains. But basically I don’t think the doctors and scientists know yet, so how can we know?
All I can tell you is that my daughter caught it when she was 7 years old. She will be 19 next month and she still has flare ups and she has ME/CFS; she still has a lot of pain especially in her hips and hands. So that’s 12 years & counting for her.
BUT she can manage it better now. She is better now than she was 4 years ago and she doesn’t get the rash as often as she did. Nor does she vomit with it any more, which she used to do for the first few years. Also last year she missed hardly any school, whereas in previous years she has often been too ill for school.
I am sorry if that is depressing news. it does get better, but I don’t think any of us can tell you that you will be cured… or when….
Stefano said,
October 8, 2012 at 8:03 pm
I see. Thank you all again. You had supported me much more than all the doctors I have seen.. All the best!
serenamuse said,
October 9, 2012 at 2:39 am
Stefano,
Tam gives an accurate picture of the disease. I was ill for six months. I improved, then a year later it flared up again and stuck with me to various degrees, progressively getting worse with each cycle for the next seven years. I have found the greatest improvement by managing my diet. I eat vegan, avoid processed foods, eat a lot of fruit and veg, whole grains, no carbonated drinks or alcohol. I avoid sugar and simple carbohydrates. I eat well! I hope you find something to help you quickly. All the best!
Serena
Luna said,
October 9, 2012 at 12:20 pm
Hi All-
I am going to piggyback on Serena’s statement, as I am still finding that many individuals are truly not understanding or (wanting to believe) ;( that diet can have that much of an effect….
I even ran into a lady at WFoods, oddly enough, who isn’t doing anything and can barely function/no quality of life/lives on husbands salary- but is continuing to eat everything she wants…. and was in pain as we sat there- and she even had desert in front of her- my heart went out to her- but, she seemed so depressed by that point that she didn’t care and had “given up”…..she needed professional help at that point…
It does make a dramatic difference- and for those continuing to suffer or with continued flares…..”no” really does mean “no” (sadly enough) Not just “ohhh, once a week/or once a month”. I only impress this because those of us that have embraced the new “lifestyle” really do seem to be getting along/suffering less/functioning more/worry less/etc…. May I make a small suggestion? For those wishing to gain as much knowledge as possible from others on here- and considering “brain fog”/memory/concentration/etc….It may be beneficial to splurge and print the blog- so you have it in hand- can mark it up- take pages with you to re-read/as a reminder/etc….
Further, whether or not you know if you have co-infections-(many do and do not know it) DIET has been the biggest factor- so, ITS WORTH changing your “lifestyle” – it’s not a temporary “diet” or gig- it’s a ‘NEW LIFESTYLE’- best way to think of it- and-relatively speaking-it’s not hard to do when your options are “life” or “no-life”…..;)
Sometimes going all the way upfront can be better- as, your cravings do disappear after a couple of weeks…Lots of good advice on here from so many….
So, once again-for those of us with the “big fog”- NO SUGAR, NO ALCOHOL, NO SIMPLE CARBS/PACKAGES/BREADS, NO (MEATS)……..
Best of luck, many blessings and endless prayers to all…..
Hugs-
Luna
serenamuse said,
October 22, 2012 at 6:41 pm
Luna,
Yes for me, I started the day after Thanksgiving. I went full vegan, mostly raw, and did not look back. It really does need to be all or nothing – especially for the first six months. The improvement though will show within a week or two. We are human and we crave at the start. The cravings to go away, soon you start craving greens! For me it helped to always have a snack on hand, apples and bananas in my car, bags of nuts in my purse. If you don’t let yourself get too hungry, it is so much easier to avoid the cravings.
Good luck everyone~!
D. said,
October 22, 2012 at 5:36 pm
I just found your blog, about ten minutes after getting lab results back and wondering “What in the heck does this Parvovirus have to do with what I’ve been experiencing?” I don’t see the Dr again until January, but I am not one to sit around and wait for Drs! I plan to read more here – and thank you very much for having this here – and, as usual, I will remain proactive. I appreciate everyone’s input here to help me get started! God bless!
Chaundra said,
October 23, 2012 at 12:02 am
I’ve posted before, but wanted to reiterate that there can be some other options for people related to food intake. (Just in case some people are afraid by the need to fully change to vegetarian if that is difficult for them). I am working with a doctor who allows some meat to be eaten as well as dairy, but favors fruits and veggies. I have removed Gluten (about 80-90% compliant at this point) and am limiting sugars. These are what set up inflammation in our systems and perpetuate this nasty thing. He prefers whole foods – not processed. These changes along with supplements have made a world of difference for me! There are options out there, but I am now positive that they involve lifestyle changes that help our bodies battle this illness.
Charlotte said,
November 8, 2012 at 2:52 am
I had my nerve study/EMG today – and yes it did hurt, quite a lot. 😦
He was a very nice doctor and explained that there was no damage showing on my large nerves in my arms and legs, but that small fiber damage does not show up on the test. He said it is most likley small fiber neuropathy, and that it will probably be permanent / progressive, as it has lasted longer than two years and nerves repair faster than that. He said that Elavil / symptom treatment is all they can do. He said there is a chance that the brain will ‘accept’ the neuropathy as baseline and may stop sending pain signals out, but there is no guarantee. Sucks.
Leslie said,
November 13, 2012 at 3:32 am
Hi, Chalotte… I’ve had the nerve studies done three times this year so I understand the ZAPS!! In an odd way, I was tolerant through the ZAPS and hopeful that they would reveal something that might indicate what the heck has been going on with me, though. I’d like to ask, Charlotte, without spilling through all the postings trying to find “your story”… have you developed neuropathy symptoms (awful burning, tingling, buzzing) sensations since your parvo virus diagnosis? The burning feet has at times been almost intolerable. Mine came on about three months after my positive IgM test and have been pervasive. It’s been suggested by my neurologist that it is a post-viral auto-immune response of some sort, so I’m still hopeful that, with time, it will get better. Yeah, it so so sucks. It’s changed life. If you wouldn’t mind sharing… thanks.
Leslie
Chaundra said,
November 13, 2012 at 1:30 pm
I too experienced the “buzzing” feeling in my arms and hands following Parvo infection. Nothing I did seemed to help until I began seeing an integrative medicine doctor (more wholistic but scientific based approach). He noted that the neuropathy symptoms were related to deficiency in the vitamins and minerals in my body, and fighting parvo had unmasked this problem. Since taking supplements, the symtpoms have subsided. I believe it was the B or Magnesium that helped, but I can consult with him again to know for sure. It requires taking more than what a typical bottle would recommend (I take about 6-8 times the doseage on the bottle), that’s why it is best to do under doctor supervision. It has made a tremendous difference in all of my symptoms! Changing my diet to get these nutrients into my system and being better able to absorb them is also the key.Once I am better regulated, I shouldn’t have to take the supplements, and can stay healthy via food intake – at least, that’s the plan!
Doug said,
November 21, 2012 at 1:09 am
I just was diagnosed with this virus, i was just wondering if anyone that has had parvo b19 if all the symptoms have gone away and they are living a normal life? And also if anyone around Cleveland Ohio knows of a good doctor that has experience with this virus?
serenamuse said,
November 21, 2012 at 2:32 am
Most likely you will get over it and live a normal life. It is only a select few who have long term issues. How long have you had symptoms?
Linda said,
November 23, 2012 at 1:47 am
Help, I’m a 50 yr old female who developed hip pain 8 weeks ago. It progressed to the groin areas and then my knee. At first I thought I hurt myself at the gym but the pain was unbearable and I could hardly walk. I couldn’t get up from a sitting position. Then stiffness started to. I finally went to my dr. And she immediately did a ton of blood work and X-rays. Everything came back fine but my parvovirus was very high. I was told I have an active case and it will be gone in a couple weeks. When it didn’t my dr. Sent me to an orthopedic guy. He did an MRI cause my knee is swollen and makes loud cracking noises. The MRI showed a sprain and swelling and fluid behind the knee cap and he says its from the parvo. They gave me Celebrex but it didn’t work. They gave me pain pills and that doesn’t work. The pain in the hips is not as nad as it was and the left hip I think has cleared up. But, I still have terrible pain and stiffness after being inactive and the knee is like a balloon and very painful. My life has come to an end. I used to be active walking my dogs everyday and going to the gym. Now I can barely walk because of my knee. I can’t fully bend it and the pain and stiffness in the hip makes it hard to get up from sitting and it takes a few minutes for the pain in the hip to go away. I see the ortho doc Monday and my regular dr. On the 7th and she said she would send me to the rheumatologist if I don’t get better. I feel fine otherwise. The only thing I had 2 weeks before the symptoms was a sore throat. But my daughter lives in CT and they have a severe outbreak of the virus and they all had it so I know where I caught it from. Will a round of prednisone help me get over this? The ortho guy said it has to run its course but I’m starting to get depressed thinking this will never go away. I tested negative for RA and Lyme and everything else. I am now just taking aleve and it does help a bit but not much with the knee or the stiffness. Any suggestions what I could try? I need some relief. It’s even hard to sleep.
Thanks, Linda
serenamuse said,
November 23, 2012 at 4:42 am
If it has only been eight weeks you really should give it more time before getting too depressed. There is a good chance that it will run it’s course. Give your body as much rest and good nutrition as possible so it can fight it off. I have not tried the prednisone, others have but it seems that they say it is a temporary fix.
Risa said,
November 23, 2012 at 5:14 am
A couple of new ideas to help with pain. Our integrative and functional doctor is very into epson salt soaks/baths. Be sure to rinse off afterward or you will feel quite tired from detoxing. Should help with pain. Inexpensive so worth a try…
We have also been experimenting with Calcium Bentonite clay for detoxing and pain relief.
As far as diet, http://www.thepaleomom.com has Ph.D. in Medical Biophysics and performed medical research in the area of innate immunity and inflammation. I have found her website to be one of the most helpful.
Blessings,
Risa
Susan said,
December 28, 2012 at 3:12 pm
Oh I forgot about clay. Thank you for posting this!
Chaundra said,
November 23, 2012 at 2:06 pm
Prednisone is a wonderful drug to help you deal with the pain and inflammation, but it has some nasty side effects as well. In the early stages of this illness, it will help with the acute inflammation and you will feel better, but it is correct to say that it could be temporary. Symptoms may return if your body has not yet fully fought off the infection. However, if you take it and are sure to still REST while on it and eat well, it may be what your body needs to help you recover. It helped me for several weeks in the beginning of my illness, unfortunately my symptoms returned after weaning off of it. Best of luck! It is still early, and you can fight this still!
Linda said,
November 23, 2012 at 2:21 pm
Do you think that a steroid injection directly in the knee would work? I’d rather do that than subject my whole body to prednisone since my knee is by far more painful than my hips. I really think my hips are getting better. my knee is getting worse and I know a big part of it is the sprain along the side. However, it’s impossible to rest a knee. I wouldn’t be able to do crutches to rest it since its my left knee and the right hip that is the biggest problem. So I have terrible pain on both sides of my body instead of just on the one side. Last night I couldn’t sleep because the aching and burning sensation in my knee kept me awake. I seriously wonder why there is no vaccine for this? It’s far worse than having chicken pox!
Linda
Bonnie said,
December 1, 2012 at 8:55 pm
I have been struggling with this virus since Feb. I was finally feeling better and feeling more like myself. I recently developed a cold sore and now mt symptoms are returning and I feel absolutely horrible. Has anyone ever had this experience before?
Teri said,
January 3, 2013 at 10:04 pm
Bonnie,
Yes!! I posted my story under the My Story tab, but I first got Parvo in July 2011. Just had my first cold since then and I have had the same symptoms as before. It really is horrible…..
Katie said,
January 4, 2013 at 9:51 pm
Clare,
I’ve had the rash come and go for years… Accompanied by hives as well. What was interesting to me about your story was the dust mites… I remember the doctor saying everyone is allergic to them however, my blood work showed I was severely allergic… I went and bought hypoallergenic pillow covers… Mattress protectors.. None of it made a difference. All I know is, there aren’t many dr.s who know how to help us. Just wanted you to know you are not alone! Prayers to all!!
Leslie said,
January 16, 2013 at 3:54 am
Hi, all… I have posted here a couple times and, today, just have a quick “shout out.” I Was at the doctors AGAIN this past week and I am still testing DNA positive for parvo almost two years after 1st being sick and testing IgM positive. To all those who continue to have their symptoms linger (even get worse) as time goes by, do you have your blood routinely tested to monitor your IgG and/or DNA levels? If you do, what has been your experience with titer or copy levels decreasing or vacilating up and down? Always digging for answers…
Leslie
Charlotte said,
January 16, 2013 at 4:11 am
I have had my IgM and IgG levels tested and IgM parvo is now negative. So because of that they dont bother testing the DNA, as I guess it is expensive. Has anyone found that IgM is negative, but DNA is positive?
Leslie said,
January 16, 2013 at 12:37 pm
Hi, Charlotte… My IgM is negative, IgG positive, but I don’t know the titer level. However, I am Parvo DNA positive over and over again, and as I said it’s approaching two years. I guess it wouldn’t matter if the DNA was positive and I was not symptomatic (as some people are) but I’ve had severe health problems ever since the original infection, However, I only for the first time had the DNA test done six months ago as my symptoms persisteted so long.
If I remember right, Charlotte, do you have neuropathy issues? Mine are severe and started about three months after original infection, along with a host of other things. You should inquire about getting your DNA tested (insist if you have to.) Problem being, though, even if youu are, finding someone who understands its significance and treatment is hard. Let me know.
Blessings for toay… Leslie.
Kristin said,
January 16, 2013 at 3:39 pm
You have to have a PCR test for parvo to see if the virus is in your blood. That is the only way they can tell if the virus is still in you. If you are still sick and having symptoms you should demand that they do this test.
Charlotte said,
January 16, 2013 at 3:52 pm
Yeah, I have twice, but they only tested IgM and IgG both times. Yes Leslie I have neuropathy and tachycardia, and occasionally chronic fatigue. It is not as bad as it used to be, but still not my old quality of life.
Leslie said,
January 16, 2013 at 4:17 pm
Glad we’ve started a conversation about this. To my persistent question, “Could I still have this virus?” so many, many months later, the doctors told me, “Of course you’ll test positive… you had it.” I accepted this answer, not realizing they were talking about the IgG antibody that we now all have post IgM and initial infection. It was only through my own research that I found out about the DNA test and, even then, had to insist that it be done. Forget how much it costs to have it done… it’s your health. If you must, try to pay for it yourself. Mine was about $300 I think. But, if it is positive, like me, it will prove that this virus is still active and can possibly validate otherwise “idiopathic” or disconnected health issues. Check labtestsonline.org and search for parvovirus b19. They give a great description of IgM, IgG and DNA. Regarding DNA, they state: Viral Detection: “If a parvovirus B19 DNA test is positive, then the person is CURRENTLY infected with parvovirus B19.” Hard to believe after 20 months, but there it was! As I said, though, there’s still equivocation on what to do now. IVIG is very hard to obtain unless you can prove organ involvement or anemia. Still fighting, though some days I’m so weary.
Leslie
Leslie said,
January 16, 2013 at 4:39 pm
One additional comment. I’ve read that the DNA can be present in the normal clearing of the virus up to 6 months or so. So, I think this DNA test may possibly only be relevent for those of us who have significant lingering infectious symptoms. Anyone who may come to this site recently diagnosed wondering if they should have a DNA test done would probably be misguided in that thought. MOST people, even if initially very sick, do get better.
Barb Archambeault said,
January 16, 2013 at 8:38 pm
My question to all of you, I read enveryones suggestions and frustrations has anyone yet found a physician that completely understands and able to treat chronic B19. My physicians said there is no such thing as chronic B19, but rather epstein barr virus which is a large class of viral infections. I was infected in 2009 and still suffer from lethargic, muscle weakness and joint discomfort only thing that makes my life somewhat manageable is when I am fortunate to receive a script for pain medications. all the physicians I have gone to is I am an addict and all your blood work is normal. Does anyone know of active medical research thats current regarding B19.
serenamuse said,
January 17, 2013 at 7:23 pm
There is no set treatment for Parvo B19. No doctor completely understands it because scientists are still trying to figure it out. Studies in the past few years have at least confirmed the serious and lasting effects of Parvo, but there is still so much unknown. If you give your location there may be those who can recommend a doctor.
Barbara A said,
January 22, 2013 at 10:57 pm
There has to be doctors or researchers out there that are at least studying the effects of B19 are females. Last May I went to NIH in Maryland Dr Young is doing research on B19 and aplastic anemia. But I have yet to find any studies into the muscular wasting, fatigue and uncontrolled pain sx associated w/this nasty virus. I am looking into Cleveland clinic read somewhere recently that a doc is looking into doing a small study. I think that all of us should come together and make a stand to these researchers that B19 is a worthy study. I am tired of doctors thinking I am a lunatic, drug seeker, or have some sort of pyschiatric issue I was a normal middle age female prior to May 2009. Isn;t it funny we all remember the day our lives changed.
Stacey Turner said,
February 7, 2013 at 5:57 am
Montgomery AL
D. said,
January 17, 2013 at 10:55 pm
Hoping someone can help me – I am now about $10,000 into this, and I refuse to see another doctor! I am absolutely convinced parvovirus B19 is what triggered my autoimmune disease. My bloodwork shows no “recent” infection, and the only time i ever had symptoms was 14 years ago; since then, i have had chronic fatigue and mental health issues, with pain and other “new” autoimmune issues developing over the past 4 years. Is there anyone out there who has similar experience? I would not call this “chronic parvo”, becaus i do not currently have the virus, or symptoms of the virus. Doctors can tell me nothing, and I just want to know if I’m right.
Charlotte said,
January 18, 2013 at 1:51 am
I still have mild/moderate peripheral neuropathy, and tachycardia. I had just about gotten used to living with that, but I have now develoepd worrying neurological symptoms. I was in hospital last night and am due to see a neurologist in a couple of weeks. I have a constant headache and waves of dizziness in my forehead. I also have beaus lines in all my fingernails and toenails – a sign of systemic issues. I just pray that one day someone will figure this out.
Leslie said,
January 18, 2013 at 3:34 am
I’m so sorry, Charlotte. Strangers, but we become “parvo” friends:) I really do hope you’ll find an answer, treatment, and hope for healing. Please keep us posted!
Luna said,
January 17, 2013 at 11:04 pm
I am with you-I feel you may be correct…
Another small side note to all who are writing in and are truly seeking an “answer” a Dr. that “knows” Parvo, etc… years of contacts and research has not uncovered this yet. I would, however, be cautious of a Dr. who states a definitive answer/cause/etc… it’s just not there yet, and we are all unique, AND carrying other things we may not know YET….;( Again- as many have stated- drastic diet change and supplements- it’s a new “lifestyle” not a temporary “diet”- best way for us to live this life and love it for the gift that it is…
Peace, love, light and healing to all….
D. said,
January 18, 2013 at 2:19 am
To Charlotte and Luna, thank you very much. I just wondered if it’s just me, or could the virus have triggered all of this – the timing was just to perfect to be a coincidence. As Luna says, changes in diet have made a huge difference for me – I have almost no pain now, whereas three months ago I could barely get out of bed; the only changes I’ve made is to cut out all artificial ingredients and I am following the blood type diet pretty closely. I can not afford to go “organic” right now, but I would definitely suggest it for anyone who is able.
cathy said,
January 20, 2013 at 3:27 am
Hello to all of my fellow Parvo suffers.. this disease is awful and I feel bad about all of the people that continue to suffer from the short and long term effects from this monster! I do not believe that there are many Dr.s that really get what this disease can do to someone.
I like many, woke up in April of 2009 …with all the Parvo symptoms..and continue to fight. I had really high IGMs and IGG at the onset and the IGM did get to normal ranges in about 6 months, but in my opinion the Parvo set off a chain of events in my body, showing what looked like autoimmune disease???
Fast forward almost 4 years later… after rounds at the Mayo Clinic to ever “ologist” they would let me see… soooo many Dr.s and Rematologists…. I’m very healthy ( right.. why do I feel awful then) so I was told .. Lupus/Fibro/Chronic Fatigue… also I had elevated Ana’s and DS dna ? I even went out to Colorado to see Dr.Melamed… a Neuro-Immunologist. Dr. Melamed ( as found on one of the Parvo websites) found through blood testing that I was allergic to Dairy/Wheat and Eggs/Dust… he did also say that many of the problems that I had, were allergic reactions.
Long story short, NOTHING was helping, the Fatigue was life altering, weakness in the body, especially in going up steps or inclines even (I had been in pretty good shape prior) I had awful pain in my Neck,head, base of my skull, shoulder blades… hands, feet well really everything hurt at some point. I could not figure out what was causing my symptoms to flare, weather, food, activity? What scared me the most. was the heart stuff.. heavy, fast, like someone mentioned on one of the forums, an awareness of your heart beating/fluttering/ beating to rapidly.
I haven’t posted in while, but wanted to post something that I found!
I came across a book called ” From Fatigued to Fantastic” written by a Fibro Dr. and in there it talked about NAET. I had never heard of it, so I did some research. I found a practitioner about an hour and 10 minutes from my home and I am so thrilled with the results… it is transforming my life….. dare I say I feel normal some days….. PLEASE if you can find a NAET practitioner… RUN….. do not walk…. it has been a miracle for me….. you can Goggle naet.com to learn more! I believe that all the problems that I have are from allergic reactions/Inflammation that have gotten worse and have been building and building for almost 4 years!
I do believe that we all have less symptoms when we eat well, staying away from the sugars, flours, etc! As these cause inflammation and in turn the body reacts, pain, fatigue, etc!
I know how life altering this disease can be, so I waned to share what is REALLY helping me!!!!!
My Best to you all! If you have questions please let me know, Cathy
Leslie said,
January 20, 2013 at 6:42 pm
Cathy, Thank you for keeping in touch to share experiences and offer suggestions. For some of us, it is such a life altering experience. I am only two weeks into a gluten elimination diet, though it sneeks in in so many unexpected ways. I’m educating myself by mistake! One of my many health issues was severe colitis (diagnosed via colonoscopy) with dramatic weight loss for the first six months, so I’m thinking it may make sense that diet may now play a role in other persisting health problems. I too am going to see an M.D./homeopathic doctor soon and will see what suggestions she can offer. Fibromyalgia has been suggested by my doctors, too . A double whamy, isn’t it?
A couple questions, if you wouldn’t mind. Has your neuropathy, in particular, improved over time? It is the most distressing of all my symptoms… absolutely miserable and everywhere. Also, were you ever successful in getting IVIG? And, if so, did it help your symptoms? Did you ever have your DNA tested? I wonder… anyone. Has your positive DNA ever been able to clear without IVIG? I’m taking everything you and other people say to heart and really starting to listen to the diet recommendations.
And Serena… thank you so much for starting this blog so many years ago. It’s been a long time for you, and I truly hope that you’re finding time and the hard work you’ve put into being well bring you improved health. Your artistic talent is amazing, too!
Cathy said,
January 22, 2013 at 12:51 am
Hello Leslie,
Gluten free can be a challenge, I have gotten so used to it, I know what it does to me, so that makes it easier to avoid.
Have you been tested for Celiacs disease?
I couldn’t even tell you all of the meds that the Drs have tried to write to me, with all of the side effects, NO THANKS!!
I’m afraid my neupoathy symptoms worsened, tingly, cold, sore/ or stiff when getting up? But are improving with NAET!
Nope I could NOT get IVIG.
I had the Parvo DNA test ran 2 times and was negative, so apparently that means it was yet in my bone Marrow?
Please feel free to ask any questions!
Take Care, Best to you!
Cathy
Leslie said,
January 22, 2013 at 12:57 pm
Hi, Cathy… thanks for your reply. Yes, I was tested for Celiac, both via blood and an actual tissue sample… both negative. Problem was, that was during a time (about six months after the parvo diagnosis) when I was being told, no, it couldn’t possibly be from parvo. So, they didn’t run a diagnostic test on the colonoscopy tissue sample for the parvo. Now knowing it’s in my DNA, along with other persisting health problems, I really believe it was the reason for my colitis. When you say it’s easier to avoid gluten because “you know what it does to you”, specifically, what does it “do to you?” Does it make your neuropathy worse? Joint pain? I’ve been reading a lot about neuropathy, in addition to parvo, and gluten free seems to be a recommendation for that too Sounds so dramatic, but really, I’ve been wrecked by thiis virus. Nerves, muscles, joints, and so very, grossly tierd. Problem is, I can NEVER fall asleep. So, I now take Ambien for that. Never have been a “pill” person, ever. Now that it’s been documented in my DNA several times, I’m hoping IVIG will be considered.
Thanks so very muich!
Cathy said,
January 24, 2013 at 2:03 am
Hello Leslie, Gluten seems to really make me very tired….also boated and puffed up like a balloon! Also it seems to really give me an appetite, over Christmas I broke down and had some, and I wanted to eat everything in site?
I sure get the…. soooo darn tired, but can’t sleep, I did trazadone for awhile, with very little help!
I WAS never a pill taker either!! LOL
Take Care! Cathy I hope that you can get IVIG!!!
Oh and I believe that maybe the problems we get after Parvo are from problems being dormant in our bodies and for whatever reason, Parvo wakes it up. Epstein Barr, autoimmune issues, etc??!
Linda said,
January 20, 2013 at 9:38 pm
Hello,
I am meeting with a rheumatologist Wednesday after having the stiffness in my hips and knee now for 4 months. I also have stiff and sore neck and shoulders. Other than those symptoms, I feel fine. I was tested for all sorts of things after going to my dr. After one month of hip and knee pain/stiffness. I ws tested for all sorts of things and the only thing abnormal was my parvovirus, the number was high which I was told is an active case. I was told the symptoms generally only last a few weeks but can last for months and even longer for some. My dr. Wants me to see the rheumatologist to rule everything else out. She assured me parvo can’t cause RA or Chronic Fatigue or Lupus but if you already have those immune disorders in your system the parvo could have activated and brought it out. She said If someone develops it after parvo it would have come out eventually. I am hoping all tests will be normal and this will just run its course. I only have stiffness/pain after being sedentary like sitting and watching tv or when at work. When I first get up, I’m stiff and sore and then it disappears with movement. I’ve been assured that is classic parvo and arthritis type symptoms. I’ve had X-rays done to look for any arthritis damage and I have no arthritis at all in my body so they tell me most likely just parvo. I was also assured you can only get it once. You become immune once you have it. I’m hoping this will soon all go away. I want to get back to normal. Does anyone else here have these symptoms and have been told the same thing? How long did they last.
Linda
serenamuse said,
January 20, 2013 at 11:20 pm
There is far too much “assurance” here for my comfort. My experience is that doctors are not sure of anything. I do not agree with the statement about Chronic Fatigue. As far as getting it once, well, infected once perhaps, but the symptoms can last for a length of time, go into remission and then start all over again when you least expect it. Researchers believe the virus stores in your bone marrow so much like herpes, never really leaves your system.
Barbara A said,
January 22, 2013 at 10:59 pm
I agree with your statement, I recently went to my hematologist and the first thing he asked was have I had a bone marrow study since their is direct correlation to recurring parvo.
Cathy said,
January 24, 2013 at 2:08 am
Linda,
I just wanted to mention that I had a Rheum. tell me that yes, she knew of a case, where Parvo caused RA, she was the same dr. that made copies of the IVIG study that was ran in the UK an number of years ago. Only if Dr’s knew what to do, and not just write Prescriptions! Take CAre
Charlotte said,
January 22, 2013 at 11:00 pm
Has anyone ever had persistent headaches that they can’t get rid off – I have had headaches and dizziness for the last three weeks, all day, every day. Nothing I have tried has helped – pain killers, decongestants, time off, more water, detox, fruit, sleep, etc. I saw a Dr who did some tests, all normal, and referred me to a neurologist. Not allowed to drive in the meantime. My other symptoms haven’t been too bad recently, but this is killing me. 😦
Luna said,
January 22, 2013 at 11:07 pm
Just as with Dr. Young, there is very little understanding and “help” per se- for the patient. I have hundreds of links- you can always try Google Scholar for the latest researchers and studies…. The challenge is finding the intermediary between researcher and patient. Or- shall I say- researcher and Dr……
http://www.biomedexperts.com/Concept.bme/25480/Parvovirus_B19_Human
Peace and Healing…
(this response seems to be connecting to the wrong post- I can’t seem to change it)
Barbara A said,
January 22, 2013 at 11:18 pm
your right this is the problem, but how can we change it? There has to be some validitated to our complaints.
Jenn said,
January 30, 2013 at 12:34 am
Barbara – I agree. A few voices may be hard to hear but many voices put together will hopefully create something that just cannot be ignored. Perhaps maybe it’s the 7th (or sadly, the 70th) sick person who goes to their family doctor and gets a positive Parvo B19 test then continues to have issues that will finally make it click, maybe not. How about teaching something different about Parvo B19 in medical school or at forums on infectious disease to start other than the standard “it goes away and then you are immune for life” line? I do think we all should try to be heard on a bigger platform – just so that in the not so distant future that there will be more research, education in the medical community and public awareness about this devastating and very contagious virus. I started (in a small way) last week with emails to the NIH, the CDC and one of my state Senators. That is the first step and I will continue to push forward. I say we ALL should send an email to those agencies, medical research groups and more, keep it brief and to the point and state your case on how serious and EASILY CONTRACTED this life altering disease can be. I wrote just a short sentence about myself – that I am a mom who contracted this from her child, (but I also noted how many teachers contract it from their students) Of course, I also said that people of all ages suffer greatly with a host of issues from Parvo and continue to suffer, basically treating themselves.
I know people with Lyme have been fighting this fight for a long time – and probably seems to no avail, but nothing will change unless we try to get the word out.
Katie said,
January 23, 2013 at 1:25 am
I had an MRI, EEG, EKG and were negative. The more invasive nerve conduction, showed the most results. This summer I had a muscle biopsy done… Waited 11 weeks got results.. Type 2 muscle atrophy. This is so difficult… I pray for all of us. Everyday is different with symptoms! What is constant, is the yearning to live again!
Leslie said,
January 23, 2013 at 1:32 am
Wow… thanks so much for such a quick response! My nerve conduction test was negative for neuropathy, but as I understand it, it would only show large fiber demylination. The nerve symptoms I have are probably associated more with a small fiber problem. I really do appreciate the info you all provide. It’s definitely helping me be informed.
Charlotte said,
January 23, 2013 at 5:15 am
Leslie – that is exactly what they said to me. Negative EMG on my arms and legs, but that there might be small fibre neuropathy that does not show up. I have been referred to a neurologist for my headaches, but I don’t think I can take another specialist saying that there is nothing showing up and nothing they can do. It is all making me think it is in my head. I am seriously going to ask this at my GP appointment on Friday. Cardiologist says that I have tachycardia from the virus, but they dont know why and can’t do anything but treat the symptoms. No one can explain why I have neuropathy and why I have aches and pains etc. Nothing ever shows up and B19 tests are now negative. I do tend to worry over symptoms that I probably would have ignored in the past, just because I am desperate to try and find an explanation and get a resolution.
Leslie said,
January 23, 2013 at 1:46 am
Katie… so sorry. Consumed in thought and forgot to give you my best wishes for successful treatment with the ivig. I do hope that it restores both health and happiness. Those of us who have had a life changing encounter witih this virus realize it affects us on all levels, physically, emotionally, even spiritually. God has been very near as I’ve muddled through this… He is my hope! Thanks again.
Risa said,
January 23, 2013 at 1:33 am
So sorry to hear hear about the headache Charlotte. Our son has had a chronic headache for 3 years. It is not a migraine. The neurologist says It is an imploding tension headache in the temples.
Weather is definitely a factor with the pain. For natural relief you may want to experiment with fish oil(used in the UK for headaches), D3, probiotics, and silver hydrosol. Gluten is a definite trigger.
Appreciate this group. Blessings to all!
Bonnie said,
January 23, 2013 at 3:24 am
Hang in there! My life changed Feb 2011!
Chaundra said,
January 23, 2013 at 9:40 pm
I too have had severe headaches that began a few days into my parvo infection. Absolutely awful – so I feel for you Charlotte! The description of imploding tension is a great one (unfortunately). If it is parvo related, my experience is that they were relentless. They were with me from the moment that I woke up and lasted through the day. I would lie down with the pain at night. During the day it lessened but never went away. The pain surrounded my entire head and I could not locate it to one particular area and it felt like a vice compressing my whole brain. Changing my diet to gluten free and taking supplements such as fish oil and magnesium has made a world of difference for me! Do be sure to get yourself thoroughly checked though. I work with dizzy patients and migraines can be the source of the dizziness or neck pathology that contributes to both headache and dizziness. So the headache could be parvo related, or something unrelated. I never had dizziness with my headache, but I wouldn’t doubt that other parvo sufferers have. I wish you healing!
Jeepers said,
January 24, 2013 at 7:41 pm
Hi all- it’s been a long time since I’ve written. I can’t believe it’s been almost 2 yrs since I was blessed to catch parvovirus (not)!!! Anyway, my symptoms have been all neurological. I know some of you ask what types of neurological….i can best describe it as a dettached feeling…off balance, headaches, possible blurriness but cant tell if its my brain or my vision. like my brain is a pile of mush sometimes. Had many MRIs, EEG, Evp, 2 spinal taps and ive seen every dr imaginable. The MRIs had lesions on them and the Evp showed some demyelination on the left side of the brain. The ms center says I’m too nonspecific. In fact one of the drs there is very intrigued with my story. I was put on ivig 1x a month for 6 months. Did it help? I’ve been off of it since nov now. It didn’t clear my head but I do think it was helping with my energy and possibly the anxiety. I did see a reputable lymes specialist and she’s convinced it is a co infection. I’m on antibiotics now. I also had a 3 hr psych exam which showed verbal memory loss and processing delay. It’s been a very long road but I’m not giving up. If I compare myself to a yr ago I can see improvements….more in baby steps. I’ve alo changed my diet to cut out 90% carbs and sugars.
We will get well!
Leslie said,
February 2, 2013 at 4:38 pm
Jeepers… I’d like to e-mail you in a more private way but wonder if you’d be interested in that. (don’t want to breach your privacy). And also, how we might even accomplish that. You need only respond if you’re interested… no pressure.
Leslie
Jenn said,
February 5, 2013 at 12:12 am
Wanted to ask a quick question…like Jeepers, my main day-to-day parvo issues are primarily neurologically related. I am dizzy almost all the time and feel “out of sorts”. Headache and fatigue are a regular occurrence too. I am very fortunate not to have joint/inflammation issues at this time and I feel so badly for all of you who suffer (had that when I first came down with Parvo about 6 months ago, it’s just awful). My stats are that I am eating the super healthy diet (no sugar, no gluten, very little dairy, lots of fresh fruits and veg, etc.), take the following daily supplements from my naturopathic doc (Vit. C, D, Omega 3’s, B12, N Acetyl L Cysteine, quality probiotics, and an immune tincture she makes). Does someone have any advice on something I can also try to help with this dizziness? It is driving me bananas and I just would love to have my bearings for a while each day! I feel the least dizzy in the morning, then once moving around more it creeps back in…which makes me think my inner ear might be part of the trouble even though I feel nothing in my ear whatsoever. Any advice is gladly taken! Thank you!!
Gia said,
May 23, 2013 at 10:22 pm
hi…I tried emailing you and it came back as undeliverable. My email is jeepers06@hotmail.com
Leslie said,
January 24, 2013 at 9:25 pm
Thanks for your post and update… it helps everyone to share/inform.
The best to you…
Lisa said,
January 29, 2013 at 5:25 pm
Hi I have been reading this site for quite a few months. I guess I have been hoping my 12 year old son would not have to suffer like all of you have been. Im so sorry that you have to endure this. The reality is my son is sick with Parvo B19 like most of you are. He has been suffering with all the symtoms you all have described joint pain rash stomach upsets etc. I really had to come to terms with that fact. It is not going away. The last few days he has had terrible headaches, blurred vision and dizziness. His only request is to live a normal life. We are going to see an infectious disease dr this week. If you have any suggestions that I should ask her please let me know. My son was diagnosed last April-May. Thank you all for being on this blog and im praying for all of you for relief soon. We will be changing insurance Co. soon to accomodate my son. Anyone no any!! Dr in Chicagoland area, that would give us some answers
Leslie said,
January 29, 2013 at 10:18 pm
Hi, Lisa… I’m truly sorry for your worry. After spilling through these posts and my own experience, I have found that parvo has some “basics” as far as those of us that deal with it on a more chronic level. However, there’s also times its effect is more individually unique. Your son is so young that the doctors may be more aggressive, but the advice I would give is to be aggressive yourself to fight his case. YES, it can last this long! The only doctor that I think finally has acknowledged the prolonged and diverse nature of this virus has been an infectious disease doctor. Possibly could you look for a pediatric infectious doctor? As for referrals. And ask to have a parvo blood test: DNA by PCR to see if active virus continues.
Blessings…
Luna said,
January 29, 2013 at 11:24 pm
Gentle, loving side note- some of the ‘top’ ID’s do NOT believe at all….they will not tell you upfront- when you make appt.- drive/fly hours/etc…..just a gentle note so others that are searching do not get their heart broken or frustrated when the Dr. looks at them like they are nuts, laughs and says- as if you were from another planet-it’s nothing and will disappear within two weeks….sadly- this happens time and time again- in fact- the majority of the ID “specialists” still do not “believe” or take an interest at all….
“We” get frustrated and hurt when we think that exhaustive explaining will help them have an “aha”- It’s so important for the patients and care-takers to stay strong, have confidence, patience and courage- and, most important of all- know when to walk out- even if the tears are streaming down your cheeks….You are not nuts…..yes, it is real, you are validated here-
Breath and believe- this too- shall pass- with time, diet, support and faith-
Peace, love, light and healing-
Luna
Lisa R said,
February 4, 2013 at 3:51 am
Thank you people. I am a little discouraged after we visited ped id dr. He examined our son told us he did not think there was really much wrong with him. He told us he would talk it over with our ped discuss the blood work that had been done last 9 months, we told him all about how sick our son had been for 9 months and how it was affecting his quality of life and his schoolwork. I may as well not been heard. He will call us said don’t worry at least it is not an autoimmune it will go away. Parvo b19 will just run its course. call you before wed if i want to run anymore tests. I think i am going to look for a good naturopath. We have him on gluten free for now i will find out what vitamin regimen would be good for him. I really do appreciate this blog or i may have been so lost. Take care many prayers for your lovely and caring responses thanks for letting me feel heard!! Xo
serenamuse said,
February 4, 2013 at 4:03 am
Find another doctor. One who will listen. This is by no means easy to do, but I have found that a “green” doctor who knows very little about parvo, but who is at least a good listener and enthusiastic about trying to help me is better than being dismissed. I suggest going to a naturopath and focusing on diet at this point as well.
Leslie said,
February 2, 2013 at 4:42 pm
Lisa… thinking about you and your son. I truly hope you were given some guidance and a game plan at your doctor’s visit. Please let us know. I think we’d all agree, the only thing worse than having this at all is having a child with it. You’re though of:)
Lisa R said,
February 18, 2013 at 7:38 pm
Hi leslie we heard back from ped id dr. He said it will run its course ot is parvo b19 and at least it is not an autoimmune disease. Upset and annoyed at the i did my job and this is what it is. We are so limited with our insurance. The ped id said if he still has it in the summer months come back then. I have no idea why if he wont do anything at this point. I ordered the book eat for life and another few books by the same author. So i am going to pursue this route. Thanks for your support down this road.
Tam Wedgwood said,
January 29, 2013 at 8:12 pm
Sorry to hear this – my daughter caught parvo at 6 years old; she had the illness you describe (stomach upsets etc) for many months afterwards. When we first kept going back to our doctor he said it “couldn’t” be the parvo, because “no virus lasts this long” – little did he know! If your doctors say anything like that, please use us as an example!!
Over time the vomiting, rash & fever reduced, but the swollen joints, pain & tingling etc did not. She did have a remission for a couple years, then In her teens she had several recurrences that were as bad as the first infection & she was diagnosed with CFS, fybromyalgia and “chronic pain syndrome”. Her illness at 15 & 16 was at least as bad as it had been when she was 6. However, she did improve with diet changes and physical therapy & now lives a “nearly normal” life, with full time school (which at one point we hadn’t thought possible). So please let him know that my daughter thought she would never have a normal life, and now she does!!
Your dr should offer physical therapy & pool therapy for the pain and stiff joints. Take them!! Swim too (even when you think you’re too tired and ill). Take warm baths with Epson Salts. Eat more fruit & veg and swallow more vitamins than you think possible – especially B complex vitamins. The book “From Fatigued to Fantastic” is great and the diet & vitamin recommendations in there really works!! Avoid sugar and starch (that can be hard for kids) but when you are as sick as this, it’s worth it!!
Good luck xx
Barbara A said,
January 30, 2013 at 1:22 am
Jean, we need to gather folks who have experience parvo this way we would be more interesting to researchers. Since trials cost thousands of dollars and this is a virus they would have to correlate epstein barr, herpes, fibromyaglia etc to find a cure. Its miserable and your right no physician in my area, southeastern CT has any knowledge of the lingering effects, when I first started feeling bad, you know the rash, swelling it took my physician 4 months and it was my daughters pediatrican that told me what I had! I know of some studies NIH, Cleveland Clinic, few overseas and California if this helps.
Luna said,
January 30, 2013 at 1:35 am
Re: CDC,NIH, Govt., etc….
I believe (after four years of research):
1 they know
2 there is something to be said for the conspiracy theories (just for fun I tried to go back to find the questionable links, whistle blowers,etc… guess what- those links don’t work anymore…) documentaries pulled- not aired, etc….If you are unaware- Parvovirus B19 was a part controversial govt. lab testing, etc…
3 there is a closer connection to Lyme
4 Dr.’s know more than they are letting on and must turn their back- unethical, yes, but they make the choice- practice and “fib”, or don’t practice and start over, face the truth…the “fibs” do cause many deaths in many forms….
We will find out soon enough….
Lisa Uys said,
January 31, 2013 at 1:21 pm
Glag to have found this blog. I am 36 years old. Went to a specialist today – had more blood tests and my ANA test is positive – normal range is 80 and mine is 160. But dr says its low positive. And guess what – been told that I should take Voltaren and panadol osteo. Also no heavy lifting for 3months. I manage a restaurant – how am i going to cope?? I had the parvo virus probably 7 months ago. My kids both had it – daughter 7 and son 13. I was extremely ill – body aches, flulike symptoms, swollen everything, fever and a brain that felt like it was being squeezed by a giant. Not thinking much of what the future would bring!! I was ill for 4 weeks. Only took 3 days off in that time. Not that rest would have changed anything. Now some days when i get homefrom work i can barely walk – my knees swell up. I have very very bad bursitis in my right shoulder and knee. Not so bad on the left side.
I am exhausted today. And just wanna sit in a corner and cry. I know life goes on – but I am exhausted. I used to work 6 days a week. Now one day takes it out of me.
I need advice – i really think i shud go for a second opinion – i dont think this dr knows much about the parvo virus. Please help!
Charlotte said,
January 31, 2013 at 5:45 pm
Sorry to hear your struggle. I am nearly three years into this virus and still rely on Elavil and Voltaren for the neuropathy / burning in my arms and legs. I am a lot better than I was for the first year or so (fatigue wise), but have a feeling I am never going to be ‘normal’ again. I am also still seeing a cardiologist and taking beta blockers for the damage it did to my heart. I do manage to live quite a crazy lifestyle still – skiing, scuba diving, hiking, horse riding, etc, but I have to try and pace myself. Acupuncture, yoga and massage also help. x
Chaundra said,
February 1, 2013 at 12:35 am
Not many doctors know anything about this virus, as I am sure that you have read, and there is certainly no clear approach in our current medical model as to how they should help us to deal with it. Unfortunately, numerous opinions will most likely not get you any farther than you already are, except further in debt. You simply need a doctor who at least will truly listen to you and help you to find the approach to addressing your symptoms that works the best for you. There is a lot of information on here, as you have seen if you have tried to pour over it already. Truly, I have to tell you, that the best way to fight this is to find an alternative/integrative medicine doctor who can help you with lifestyle changes that include changing what you eat, and possibly taking supplements/naturaly products. I was so hesitant to make these changes, even after reading this blog for a while, thinking that this had to eventually go away, or there must be another answer. Nothing helped and prescription medications have their side effects, so you simply change one tproblem for another. I am feeling 90% better now thanks for seeing an integrative doctor and approaching this naturally. It is TRULY worth the initial sacrifices that become your new lifestyle. It empowers you to take control over this awful situation. No, I can tell that I am not “cured,” but at least I can function and my family doesn’t have to put up with my melt downs on my really bad days. Now if I get a mild headache I can’t imagine how I used to deal with the bad, bad days, as these are nothing in comparison! I share this information because I am a believer now in the approach and I want others to feel better too! Best of luck on your journey to health!
Jeepers said,
February 1, 2013 at 1:34 am
I know we talk about electrical sensations sometimes throughout our bodies. Does anyone get them in their head? Just curious
Charlotte said,
February 1, 2013 at 5:28 am
Yes, especially as a side effect of the Elavil I take.
Jenn said,
February 1, 2013 at 3:25 pm
Not so much just in the head, but I have noticed that since coming down with parvo that I am MUCH more sensitive to Cell phones, prolonged WiFi exposure, cordless DECT phones, etc. and basically can’t hold phones up to my head now. I use a head set or home phone that has a old fashioned cord. Time on the computer (near the WiFi) has to be in shorter intervals.
Julie said,
February 5, 2014 at 12:32 am
Yes. I sometimes get them in my head – strange sensation of itchy and burning scalp and feels hot – comes and goes a couple of times a day. I first started getting parvo symptoms March of 2012 – most symptoms went away August 2013 – except for the electrical sensations and a sore throat on and off when im run down.
Lisa Uys said,
February 1, 2013 at 12:16 pm
I have had a bad day. I am manage a restaurant and the work is very tiresome – specially because I am walking the whole day. I currently have inflamation in both shoulders. Just wondering – the doctor put me on voltaren tablets and said to take a painkiller. I also started using omega3 tablets. Now my question is whether there may be a once a day medication that will help??? I am in brisbane, Australia. Also is there changes i can make to my diet???
I feel misreable. Basically every day after work it feels like I wanna just get in bed and sleep and never get up again. This is not what I expected at the age of 36. Also , will it be fine for me to excersise?? I have already spent so much money on doctors and dont feel like i have been helped at all!!
Jenn said,
February 1, 2013 at 3:20 pm
Lisa – I am in a little bit of a rush, but wanted to answer your question about diet changes real quick. Read through the blog (it will take some time) and see what others have written about diet. If you have access to see a naturopathic/holistic doctor, do it immediately! They will get you on a plan with the proper supplements for your particular issues. Many people also take whey protein powder, so search that too….it is a particular kind of powder, I don’t use it yet but I am not having joint stiffness at this time and it seems like that is the benefit for alot of people with the protein powder. The most important thing you can do starting NOW is eat incredibly healthy food: as many fruits/vegs (organic if you can afford it), limit dairy/red meat, limit or preferably eliminate gluten and NO SUGAR. Alcohol is a no -no too. Drink water, herbal tea and keep yourself hydrated. Sleep is important too. Basically, you are going to try to live as clean as possible to allow your body to fight the symptoms brought on by parvo and how it is affecting you. During my “bad days” I eat primarily vegetarian, the point is to eat things that was easily digested – so that’s why red meat is not so good. Eating vegetable soup was all I did when I was acutely ill. My holistic doctor has me on an “anti-viral” program, it is helping to give me a decent quality of life, but some days are better than others….as we all know! As for the Omega 3’s if you can, get a higher quality one, such as Nordic Naturals. I take 4,000 mg a day of Omega’s as a part of my supplements.
Best of luck – if you have not already…make these changes today, many people say they wish that they had done it sooner. It is hard to accept, but you have to do it to heal yourself. 🙂
Lisa Uys said,
February 1, 2013 at 7:38 pm
Thank you so much for the quick reply.
Once again i will slow down and take the time to read through the blog. I think finding this blog is better than the $$$$$
I have spent on doctors in the last 6 months. Thank you so much for starting this.
I believe that in a month or two I will be all smiles. Thank you 😀
Lisa R said,
February 19, 2013 at 3:29 am
Does anyone know the name pf the whey protein powder that was blogged as being good how much would you give a 12 year pld???
Kelly henson said,
February 3, 2013 at 2:57 pm
Two years ago, my then 6 year old woke up with swollen hands and a rash all over her body. I took her to her peds and thy said he had parvovirus. We were sent to an immunologists to get further testing. She was diagnosed, or so we were told, with hereditary angioedema. For about a year and a half after that she has been battling swelling in all manner of random places and still getting the rash with it. The frequency of swelling was about once every three months. In June she started swelling every other week. All of these symptoms are text boom for Hae. About a month ago he starting having pains in her legs and feet, even without swelling. I called her immunologists who now said tht she was never actually genetically diagnose with Hae and now finally he wants to do more blood work ( after her not having any follow up blood work after a year). He mentioned lupus. We go for the blood work next week. I have done a lot of research and found that people have effects from parvovirus many years later but not very common. But it can happen. It is also a precursor to other diseases.
serenamuse said,
February 3, 2013 at 5:51 pm
Does she actually look swollen? I never do, it just feels that way. Right now my hands are killing me, feel twice their size, but look normal.
Tam Wedgwood said,
February 3, 2013 at 6:21 pm
My daughter also caught Parvo when she was six. Her hands swelled up like huge round balls! Swelling and rash recurred periodically over the next 1.5 – 2 yrs and we were back and forth to hospital, lots of tests, all inconclusive. She’s been tested for Lupus several times. It is always negative. I am now convinced this rash and swelling is the parvo itself recurring. And your daughter’s case sounds just the same.
The swelling still recurs but eventually she stopped getting the rash. And sometimes the hands are not visibly swollen, just feel very stiff.
If your doctors haven’t heard about this, please tell them this can happen in parvo – it sounds to me that (as in our case for years) they are looking in all the wrong places! I do not think these results from parvo are as rare as doctors say – they just haven’t heard of it! Look how many people there are on this site all with very similar stories. Also it is more common to get these ongoing, recurring symptoms if you are female.
Jeepers said,
February 3, 2013 at 9:43 pm
Leslie- Id love to chat. What is your email?
Jenn said,
February 4, 2013 at 4:16 am
I know this is incredibly with a child…but The thing you must eliminate from your child’s diet is SUGAR! That seems to be worst offender in making people flare. I have a sweet tooth, so I have some dried fruit here and there (non-sweetened). So he can have fruit and might be able to have a little honey on something after he feels better (its trial and error). I also use a tiny bit of organic stevia here and there, you could test that too.
Linda said,
February 5, 2013 at 12:38 am
Have you ever seen someone for your dizziness that treats BPPV? I used to work for an audiologist that treated this and was shocked to how many people suffer for long periods of time with dizziness. It’s a simple quick maneuver of the head that can be done by a physical therapist. Sometimes it takes a couple treatments but can take care of the problem with no medication. Look it up its begging paroxysmal positional vertigo.
Linda
Chaundra said,
February 6, 2013 at 10:21 pm
I’m having trouble with my messages posting??? And now I don’t see the message that I had planned to reply to regarding dizziness. For the individual who posted, your symptoms do not sound like BPPV. I am a physical therapist who specializes in vestibular rehabilitation (dizzy patients). I would like to hear more about your condition to better understand but believe you definitely need to get this checked out further. I can give further guidance but want to avoid writing a novel right now, as 2 previous attempts have not posted. If you see this and want to reply, I’ll try to offer more advice.
Jenn said,
February 6, 2013 at 11:46 pm
Hi Chaundra – this is Jenn. I was the one who posted about the dizziness. Thanks so much for your note, I didn’t receive the others?? Anyhow – my symptoms are as I mentioned earlier, mostly neurological. I have dizziness daily (which seems to be positional and I always feel best in the AM, when I haven’t been moving around much yet after a night’s sleep). It’s not technically vertigo as the room isn’t spinning, it’s more that I don’t have my bearings at times, as if I were on boat or something. Looking chin down and then up is a trigger or picking something up off the floor. I have a mild headache alot of the time too. I would say most of the issue appears to stem from the right side of my head – that’s where I had ringing in my ear in December, before I quit sugar and overhauled my diet in early Jan. I came down with Parvo in August 2012, got better in Sept/Oct., then dizziness began around Thanksgiving…I had a full Parvo flare up again in late December, this time there was no arthritis, thank the Lord. That’s when it all dawned on me I was not going to “be immune” for life as my GP had told me. Been fighting the good fight every day ever since and had some other tests done in the past few weeks to make sure there isn’t something else causing this. I haven’t gotten all the blood work back yet, but I am 99% sure it’s still “just parvo” (ha!) because of the overall pattern and the link to diet. I really try not to complain over my issues when I see how others suffer, but the dizzy feeling/headache are taking away from my quality of life in their own way and if there’s something I can do to improve it, I will try it! FYI – I had an MRI this week, it came back all fine. My chiro told me to try “vestibular therapy” through an ENT specialist, which I’m sure you know all about. Thinking the parvo might be giving me some issues in my inner ear and that it might help.
Well, that’s the whole enchilada….thank you for your help!
Leslie said,
February 7, 2013 at 1:36 am
Hi, Jenn… I had a viral inner ear infection 15 years ago that left me with severe vertigo… a lot of it positional, like you said. The vertigo “attacks” were preceded in seconds by a high pitched ringing. I have been very, very dizzy with occasional vertigo similar to when I had the viral inner ear thing years ago (not as bad though) along with the other parvo stuff. I feel a bit disoriented sometimes. It is a bit reminiscent, though. At the time, they thought it might be Meniere’s diesease, but it did pass in about six months. Ughh!
parvoless said,
February 7, 2013 at 2:45 am
I really think Olive leaf (liquid- in refrigerated section of health food store) helped me.
Stacey Turner said,
February 7, 2013 at 6:44 am
Very thankful for this blog. I was 33 when the virus swept through our family. Out of 9 people, I am the only one left with chronic symptoms. I remember the day I woke up with the stupid pain in my feet, like I was walking on marbles, and in my hands and knees.
I am a very healthy person. I teach health classes in the community, mostly about eating healthy and including more fruit and veggies into our diets. I have not been to a Dr for being sick in over 8 years and yet here I am, 9 months later feeling decades older.
The pain and stiffness in the base of the palms of my hands, my right big toe, and the heel of my left foot are so aggravating. I knew it was the virus, but just kept thinking it would run its course. I am afraid of what else it can turn into or trigger. I have not been to a Dr because I learned a long time ago that most of them are very narrowly focused on meds and I don’t want to treat the symptom (with side effects of meds), I want to kill the virus. I feel I a getting more information form you all than I will from a Dr. Honestly, I avoid them at all costs!
I have not made serious diet changes, like gluten free or sugar free, but feel like I eat a pretty clean diet. I am going to start looking into a naturopathic Dr, and alternative treatments, as well as making serious diet changes.
We are in Ukraine adopting 2 teenage girls and we have three younger children at home. I can’t afford for my body to weaken or get worse.
A huge thank you again for all of you sharing your stories on this blog. We are not nuts, out of our minds, or making this up. I will keep you all updated on what I find to be helping as I start this new journey of discovery.
serenamuse said,
February 7, 2013 at 7:25 am
I wish you all the best. Do let us know how your experience with the naturopath goes.
Luna said,
February 7, 2013 at 1:09 pm
Stacey-
We are with you-
Best advice immediately, as you can see from others, do cut out the sugar today…
Will be waiting for the update!
Peace, Hugs and Healing…
Stacey Turner said,
February 10, 2013 at 11:32 pm
Ok, so while in Ukraine, I got a UTI. I know, perfect timing. Too much tea and not enough water I think. But anyway I wanted to do all I could to get rid of it without antibiotics so I went to the drug store and bought some cranberry capsules. They had celery and watercress, and parsley in it as well. I took like 12 of them in one day( I think the package said to take one per day, but couldn’t read it because it was in Russian! lol!) along with Juice Plus (which I have taken and represented for 10 years) which is fruit, veggie, and berries in capsule. I took probably 30 of them in that one day where usually I take 6.
I drank more water than I thought humanly possible and was surprised how by the end of the day, I could stand up without limping and lift a heavy pan with one hand! My pain level was drastically lessoned for the day and I did get rid of the UTI!
So now I am wondering what made such a big difference. My pain level was still a bit better the next day, but back to normal today, so it did not have a lasting or carry over effect.
I am wondering if it was:
A. The ridiculous amount of water I drank.
B. The capsules from the pharmacy
C The mega dose of Juice Plus
D. all of the above
Do any of you have experience with hydration helping?
Have any of you noticed a simular effect from say, juicing?
Pondering in Ukraine…
Stacey
Lisa Uys said,
February 7, 2013 at 1:28 pm
Today has been a hectic day. Woke up hurting this morning. I unfortunately work in a restaurant. And physically am in agony almost every day. I have had two good days this week. But I am still positive. I will beat this. And this blog surely has made me think of different strategies – because here I get recommendations and also a feeling of not being so alone. Its like everyone around me thinks i am fine – they cant see what i feel.
Inhave developed a rash as well. So dont know whats up with my system. Hoping its just because of the vitamins I take and my diet changes. I have cut out sugar and trying my best to go without gluten. No red meat etc etc. Because I have been tested positive for autoimmune disease – i have ordered come cook books to help me. I surely can feel the inflamation in my shoulders, hands , knees and feet , lately i also feel pain in my hips. But I dont have arthtitus as per the doctor.
I am hoping than making drastic lifestyle changes I will see result soon. This blod has truly inspired me and I want everyone to remember: CHIN UP !!!!!
We are not alone and at least we understand each others pain.
Luna said,
February 7, 2013 at 1:49 pm
Hi Lisa-
Quick ?? re: “Because I have been tested positive for autoimmune disease”….
What did they tell you you “tested positive” for? Which tests did they do?
Keep copies of ALL tests….
To all:
I have discovered that many newbies among us/other illnesses are unaware that there are not “definitive” tests for many diseases- and they simply trust the Dr.’s when told ” you test positive/negative for….” Unless “we” do the research and discover on our own how they come to these conclusions….I am still reading on many many blogs- “I have been tested for……and it’s negative.” Not even realizing that the Dr. simply came to that conclusion on his/her own by reviewing a number of tests that didn’t have any outstanding triggers/indicators in their eyes (at that time/from their own education/training/etc…)
It takes time, but do research the tests- read the latest news on each- the controversies- the questions- etc…. There are many other explanations out there that are much more articulate and detailed than this- sadly- I don’t have the energy and brain power right now….;(
Lots of support to all…..
Once again- KEEP A COPY OF EVERY TEST YOU HAVE- be certain it is the lab test itself- not a synopsis- it may save your life one day…
ps. I think Olive Leaf has helped me too- I just started again after a little set back after running out….hmmmmm;)
Lisa Uys said,
February 7, 2013 at 1:59 pm
This is truly a work in progress. I know there is so much out ther to still learn. Dr said tests came back positive for Lupus. So just gotta watch out for any SERIOUS symptoms. But am confused cause he said the tests shows I am double the normal result. Will get my GP to have a look at it too. She has known me for many years. I am reading as much as i can on all this. So hlad to have found this blog. Will get all tests from my dr!!! Thank u 🙂
Jenn said,
February 7, 2013 at 5:33 pm
Stacy – I second the sugar. My ears were ringing for weeks before I realized that this was parvo coming back, and the day I stopped sugar the ringing stopped the next day. That was such huge a testament to me.
ALL sugar, unless it comes from fruit. A little dried fruit in moderation is ok, nothing that has been sweetened, (so raisins, etc). I have a slice of dried mango when I crave “dessert”. Once you are better, test a little bit of raw honey if you need a sweet flavor added to something. I also use about 1 small packet of organic stevia daily….a little here and there throughout the the day. I had a sweet tooth so this was a tough change for me, but the very most important one I feel.
Luna said,
February 9, 2013 at 10:52 pm
REQUEST: A “HANDS” UPDATE FROM ALL…..
Serena- I hope we can find another format soon because I know this will be a doozy….;)))))
Hi guys- Many of us talk about “hands” quite a bit with varied symptoms and suspicions of additional triggers, exasperaters, etc….
Without writing a book- perhaps we can “pool” our challenges? What I would really like to dig into is too heavy for the “blog” at this point- but perhaps this will be a start- and help us distinguish which symptoms may be more connected to “just parvo”, a “co” infection- “specific” autoimmune, meds, “we have no clue ;)” etc….
hmmm- perhaps we can number them? Feel free to take charge, add on, re-write, etc…I’m foggy and tired… Will definitely be challenging to guesstimate as we will not have the whole story (meds, foods, supps, etc…) But, I am curious- as I would like to try to narrow it down- and boy, we really depend on our hands- even if we are fully “disabled”….;(((
1 a “feeling” of generalized weakness (unable to use much of the time, drop things, can’t write anymore, drink w/two hands….) super curious about this one- if more parvo- or other ie: Lyme, etc…)
2 tingling
3 numbness
4 generalized/all over pain
5 swelling -with/out redness
6 visible discolorations/vein issues
any I forgot
A- since onset B- intermittent C- increases with time D- late onset
E- AFTER using
thanks guys- hopefully the info we pull will be of tremendous help now, some day soon, and for future generations….
Stacey Turner said,
February 10, 2013 at 7:55 am
I would add pain in joints in hand
for me I would say 1A
Leslie said,
February 11, 2013 at 3:08 am
Luna… glad to help in your survey. To think the hands are just one of oh sooo many things gone wrong since parvo. But, I’ll say the hands were one of the first signs of the virus. For me, it was/is: 1 (weakness due to pain?) A and B; 2 (tingling/ prickling)/D; 4(pain/stiffness)/A and B; 5/A (only at onset); 6 (rash)/B.
And Stacey… too funny. I just bought the olive leaf supplement yesterday but was confused on the dose (to be safe). Mine is labeled as follows: 30% oleuropein. 410 mg. olive leaf (leaf extract) and 245 mg. olive (leaf). Only taking one a day at dinner. The stuff stinks! 🙂
serenamuse said,
February 11, 2013 at 5:10 pm
Luna,
My first symptom was a rash on the backs of my hands – prickly, itchy, red rash. The the next morning my hands were stiff, sore and swollen, could not get my rings off. It was in the few days following that I noticed similar stiff swollen, soreness in knees and elbows. The fatigue came along with it…
Charlotte said,
February 12, 2013 at 12:02 am
Hi. 2AB, 4AB, 6C (livedo reticularis type rash on back of hands, arms, legs and feet; worse in the cold).
Chaundra said,
February 10, 2013 at 10:21 pm
Am I the only one having trouble getting my comments to post??? I’ve tried to reply to you, Jenn, several times and it won’t go through and now when I try to paste it into a new reply it actually tells me that it is a duplicate entry, even though I do not see my reply on here anywhere! I promise, if I can make it happen (maybe with my other e-mail address) I’ll have some info for you about the dizziness, Jenn!
Jenn said,
February 10, 2013 at 10:29 pm
Ah – how frustrating! Thanks so much for your persistence Chaundra, sadly, I haven’t gotten any of your posts. This is my email address:
jclarke25@nc.rr.com
I just started taking Olive Leaf capsules, 1 900 mg capsule/day. I think it’s helping.
Luna said,
February 11, 2013 at 12:16 am
Stacey- D, All of the above- with WATER being the miraculous component…..
EVERYONE should double/triple their water intake this week and write in next week….;)
Congrats Stacey!!!
Barb Archambeault said,
February 11, 2013 at 4:08 pm
My first symptom was terrible swelling & red rash with joint pain. I continue to have issues with chronic anemia, fatigue and joint pain. Prior to May 09 I had no health problems now I need a knee replacement, severe OA in hips & back? I find it frustrating that no provider truly understands the lingering effects from Parvo, especially in women +40yr. I have even been to NIH with no luck…Anyways for hands symptoms none.
Leslie said,
February 11, 2013 at 5:39 pm
Barb… wondering. Would you mind sharing? When you say you’ve been to NIH with “no luck”, what was your experience like? Did they offer you any form of treatment recommendations or was it more a fact gathering effort on their behalf to further clinical investigation? Who did you meet with? And what expense was involved? Was your appointment initiated by your doctors or were you self-referred? I notice you’ve had parvo for four years now. I do hope there’s been some improvement, though it be over a long period of time.
A lot of questions… but thanks in advance:)
Katie said,
February 11, 2013 at 11:58 pm
Luna,
Have all of the hand symptoms… Something new… 5a or 6? Sharp, knifelike stabbing pain in-between fingers. No rhyme, no reason… Today I grabbed a book to read to my second grade students and sort of gasped out loud.. Pain unbearable.. I would be lost without all of you. Even though we don’t know eachother, we truly depend on eachother. Whether it be for what might help, or to know we are not alone.. Thanks to all and Prayers!!!
Linda said,
February 18, 2013 at 11:07 pm
Hi, I wanted to let you all know what I’ve been through and maybe my story will help others to find the help they need. I posted here a couple months ago. I woke up one morning in October with hip/groin pain and stiffness, knee pain and stiffness and neck and shoulder pain as if I’ve slept wrong. I thought I hurt myself at the gym so tried to ice And rest it but it got worse, so I went to my GP. She did X-rays and ordered a lot of blood work. The only thing that came back elevated was parvovirus. She ordered prescription aleve and said it will go away. My knee got so bad to where I couldn’t walk. The stiffness and weakness in my hips was killing me. Couldn’t get up from low sitting positions without support. The knee guy ordered pt and tried to drain the swelling and gave me steroids in my knee. He sent me to physical therapy.
Nothing worked and nothing was making it better. In January the knee guy said this is abnormal, parvo doesn’t last this long and he said he thought something was going on in my immune system. So I went to the rheumatologist. Let me tell you, she was my saving grace. Right away she said stop the physical therapy your in no shape to do that. She told me that Dr’s tell patients they have active parvo when in fact they don’t. She told me 99% of the population has had it. She ordered new bloodworm and looked at my old one. She said all she could tell was that I had a recent exposure to parvo. My grandchild had it and I was around him. The only symptom I had was a sore throat for 2 days and runny nose and then 10 days later the joint pain. She explained to me that when your symptoms of joint pain don’t go away its because your immune system has not shut off. It is continuing to think you have the parvovirus when in fact you don’t. She confirmed that with the new blood work. I still had all the symptoms but my number had decreased. She said the only way to treat it is to suppress the immune system. Sometimes it works and sometimes you have to go on a drug that they use for RA patients at a low dose for. While. She put me on steroids for 20 days and by golly after week one, I felt like a new woman. All my symptoms disappeared. I’ve now been off the steroids for a week and I met with the rheumatologist again. She was absolutely thrilled. She told Me i’m someone that she has to watch very closely. She says my immune system doesn’t like viruses and she said I will be back in the future. As long as my symptoms only flare every so often she can treat me with the steroid but if they continue to come back she will have to put me on a low dose immunosuppressant drug. I do not want to down play anyone’s ordeal but thought I would share in case you haven’t been this route before. I spent. 4 months in a lot of pain and misery and now I have my life back. Maybe others need to explore immune symptom problems or just request to meet with a rheumatologist. I’m sure glad I did. I’m praying it will stay away but I know I may have other issues in the future and I’ll deal with it then. All my blood work came back normal except slightly elevated parvo and surprisingly my sed rates were all normal. So she said my immune system wasn’t even reading the inflammation in my body. She also told me that many people with immune system problems have normal blood work for many years before it shows up. I may be one of those. I pray you all find your answers as it is a nasty thing to have.
Linda
Chaundra said,
February 18, 2013 at 11:35 pm
Glad that you are feeling better and that something has worked for you. I think we all can agree that the Parvo starts the problems that lead to numerous bizarre symptoms related to its affect on our immune systems. I was placed on Prednisone in the early weeks of my diagnosis by a rheumatologist, and just like you, I felt like a new person again. However, as soon as I tapered off, everything was back with a vengence. The second round of steroids did nothing except plague me with all of the nasty side effects. The only thing that has helped since are diet changes and supplements that do boost my immune system to help deal with the nasty symptoms that it leaves people with. Hopefully your steroid dose helped your body to fight the infection off, but be careful just waiting around for flare-ups and then taking synthetic immunosuppressant drugs. Everyone should be proactive and boost their immune systems now to prevent flare-ups.
Linda said,
February 18, 2013 at 11:43 pm
Well the key as that I was told I didn’t have the infection any longer but my immune system thought I did and that was the problem. I hope I will not have to take any more drugs. I hope it’s the end. Did you take a low dose immune suppressant drug after the steroids didn’t work? My rheumatologist said that you may not need to take it permanently just long enough to let your immune system calm down. I know they have side effects but I really hd no quality of life as I was used to so for me I would have tried the low dose immune drug. Only time will tell for me, but I feel like I found a good doctor and she certainly knew her stuff and was well educated about parvo. I hope you find some relief. It’s a terrible thing.
Luna said,
February 18, 2013 at 11:55 pm
Hi there- not much time to respond- but I will try as well….
It is wonderful that you have care providers that are working with you and that you feel better….There are many facts in the original post that are not the case for most people, nor are agreed upon by Dr.’s, researchers, etc….. and most (that are well versed) are passionately against the use of steroids….
I understand the statements made, but, unfortunately- many are not fact…. Did you have a DNA test done? A bone marrow test done??? etc….. Yes, Parvo can lead to immune issues…..there is quite the controversy over what is “fact” regarding the virus….many “beliefs” …it brought “out” immune issues…. it “caused” immune issues…MS, etc….
Definitely research on your own….read the full blog….. In what regard was this Dr. well educated on parvo??? Recent training? Research program? What institution is there a connection with if any??..Etc… Many would be super curious to know….thanks much 😉
May you remain healthy and strong for life!!!!
Blessings,
Luna
Linda said,
February 19, 2013 at 12:38 am
I have read through the blog and I feel for everyone. I too was in pain. Maybe I’m just very lucky but only wanted to share what worked for me(for right now anyways) and maybe someone hasn’t yet met with a rheumatologist. My dr. Told me she has treated many patients with parvo and she has attended conferences where new info is being discussed regarding the virus. I did ask her about the DNA and bone marrow as I learned about that on this blog. For me, she said it is not needed. And yes I know the steroid use is not good and she told me that. That’s why she said I could only use them if any new episodes are very far apart. Everything I’ve read seems like they don’t know a lot about it or at least can’t explain a lot of it. I hope that someday very soon they find an answer and I pray that everyone suffering form this horrible thing can find some relief.
Linda
stacey said,
February 19, 2013 at 12:09 pm
Thought I would mention this again because immune system and nutrition keeps coming up.
As I shared earlier, I am in Ukraine and had a UTI that I was able to get rid of by extra doses of whole food (fruit and veggie) concentrates in a capsule. It also helped lesson the pain in joints and every one else in the house caught a nasty cold, but I did not. It is called Juice Plus and as I stated, I have taken it for 10 years, but never in this large of an amount. I have continued to take more than normal and I have seen a significant decrease in pain level on those days.
It does have research on it that shows it helps support the immune system (brings it back to balance so not over working or under working) and there are no side effects because it is just food.
I know we are all looking for solutions so I wanted to update you with this.
Yes, I am a rep for Juice Plus (have been for 10 years) and would love to answer anyones questions about the product. They have it in a childrens form as well. I will list my website and you can read “research shows” tab as well as watch a video on how it is made on the home page and two more under the “resources” tab. LearnAboutJuicePlus.com
I am also looking into a natropathic MD in AL when we get home. I think anything we can do to keep our immune systems from over reacting is helpful. Like was stated by someone else, maybe there is something we are eating or not eating that is triggering the overreaction as well.
So thankful Linda was able to find a Dr that at least didn’t think you were crazy and a best was able to help you.
Blessings to you all from Ukraine! Hoping to go home in about 2.5 weeks!
Stacey
Lisa R said,
February 22, 2013 at 3:16 pm
I have not seen any new posts in a few days is there a problem with the website?
Jenn said,
February 28, 2013 at 11:08 pm
Hi Serena (? are you the blog owner?) –
Is there any way we can see our posts archived more closely by date?? Or at least to show up under the proper year? I am trying to gain more awareness/attention on a larger scale for all of us who suffer from issues relating to Human Parvo B19 and would LOVE to reference this blog as a source (so the people I contact can see how many of us struggle with this awful virus). It seems most of our recent posts are on “The Purpose of this Blog”, which started in 2008. I am willing to help, although I am by no means “technical”, truth be told! I can cut and paste entries over to their appropriate year or something.
Thanks much – Jenn
serenamuse said,
March 7, 2013 at 5:46 am
Honestly, I have no idea. I’ll go into settings and see if there is anything I can do…
Lisa R said,
March 12, 2013 at 1:56 am
Thyroid Disease
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Researchers have been looking at the role of human Parvovirus B19 in thyroid cancers and other disorders. What they’ve found is that there is a strong link between papillary thyroid cancer, Hashimoto’s thyroiditis and B19. By analyzing thyroid tumors for the presence of B19 — which interestingly, was found in the majority of the tumors studied — the researchers discovered that the thyroid is highly capable of harboring B19. The researchers believe that their findings suggest that B19 is infecting the thyroid gland prior to the formation of tumors.
In an article in the Journal of Infection, researchers reported on a study that evaluated whether B19 is involved in adult Hashimoto’s thyroiditis. They analyzed thyroid tissue from adults who had a variety of thyroid disorders, and they found that B19 was present in the thyroid tissue of patients with Hashimoto’s thyroiditis — with prevalence ranging from 72% to 91%, depending on the test methods used. Parvovirus B19 is present in only 13 to 44% of normal thyroid tissues.
These researchers wrote that “the presence of B19 nuclear acid and viral protein was significantly common in Hashimoto’s thyroiditis tissues and it suggested a possible role of B19 in adult Hashimoto’s thyroiditis.”
What is Parvovirus B19?
Parvovirus B19 is a virus that causes an illness known as “Fifth disease.” The viral illness is most common in younger children, and causes a rash on the cheeks, arms, and legs.
Parvovirus B19 is spread by contact with respiratory secretions. The first sign of the disease is usually bright red cheeks, which in children look like the child has been recently slapped on both sides of the face, giving it the nickname, “Slapped Cheek Syndrome.” A rash appears on the arms, legs and torso. There is occasionally fever along with the rash. Eventually, the rash fdes, and usually goes away within one to two weeks.
Sources:
Adamson LA et. al. “Infection and Replication of Parvovirus B19 in Thyroid Cancers,” Abstracts of the American Thyroid Association Annual Meeting, 2011
Wang J, et. Al.”Parvovirus B19 infection associated with Hashimoto’s thyroiditis in adults.” J Infect. 2010 May;60(5):360-70.
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March 5, 2012 at 11:18 pm(1) Anne says:
Fascinating because I had a horrible undiagnosed (7 doctors starred at me for 45 minutes) rash same as described in B19 parvovirus ( fifths disease) and I’m a papillary thyroid cancer survivor. I’m still baffled that they couldnt figure it out and a specialist said it was urticaria which not for nothing this rash was extreme and not hives.
March 6, 2012 at 12:31 am(2) Jen says:
So if the majority Hashi’s patients were found to have B19, does this suggest they are more susceptible to developing thyroid cancer? Or are Hashi’s patients more susceptible anyway?
March 6, 2012 at 6:49 am(3) Debbie says:
Having suffered with Hashimoto for 6 years and have a constant feeling of being unwell ,it explains why I have a rash across my cheeks ,like a sunburn ,I was tested fot Lupus !
March 6, 2012 at 7:07 am(4) Elizabeth says:
I started having thyroid problems at 6 years of age. Then at about 10 or 11 I had Fifth’s Disease. At 34 I had to have a total thyroidectomy due to goiters/Hashimoto. I feel that Tirosint has made me feel most stable since the thyroidectomy.
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March 6, 2012 at 8:00 am(5) Clowngirl4 says:
I had fifth disease as a child. Now have Hashimotos. Now what?
March 6, 2012 at 8:09 am(6) Phyllis says:
I was wondering is this B19 Parvo virus the same Parvo virus that canines get? Is is related to it at all.? And is it able to cross species like the Rabies Virus? Was a little confused about this. Could you explain more.
March 6, 2012 at 10:55 am(7) shari says:
about 12 years ago when my child’s class had several cases of Fifths disease going around, there of us moms
had symptoms a little while after of extreme fatigue,
and flu like aches. one of the moms was a
nurse, did some research and came upon
adult 5ths or parvovirus … she sent bloodwork
to a lab in Ca who wad one of th only ones
aware of that disease as the time, and her
titers and other results confirmed that
it was Parvovirus B! The local doctors
would not evn check and had scoffed
at her. Now, all these years later, I have
had yhurodid and have nodules on my
left thyroid, the other two women have
hypothyroidism, nodules and being checked
for hashimotos. So much more awareness
must be spread about this, and doctors
have to wake up and take their patients
information, wisdom and questions more
seriously. Where has all the professional
diligence and intellectual curiosity about their own
chosen field of study gone? (not to mention
caring)
March 6, 2012 at 11:07 am(8) shari says:
(sorry about all the original comment I left typos and errors… using an iPhone on the run… hppefully, here’s a more coherent edited version:
About 12 years ago when my child’s class had several cases of Fifths disease going around, 3 of us moms
had symptoms a little while after of extreme fatigue,
and flu like aches. One of the moms was a
nurse, did some research and came upon
adult 5ths or parvovirus … she sent her bloodwork
to a lab in Ca who was one of the only labs
aware of that disease at the time, and her
titers and other results confirmed that indeed
it was Parvovirus B! The local doctors
would not even check and had scoffed
at her. Now, all these years later, I have
had thyroiditis and have nodules on my
left thyroid, the other two women have
hypothyroidism, nodules and one is being checked
for Hashimotos.
So much more awareness must be shared about
all this, and doctors
have to wake up and take their patient’s
information, wisdom and questions more
seriously. Where has all the professional
diligence and intellectual curiosity about their own
chosen field of study gone? (not to mention
caring … )
March 6, 2012 at 12:06 pm(9) Noirin says:
First – the parvovirus that animals get is not the same as the strain that humans get, and the disease is not passed from dogs to humans.
Fifth’s Disease was identified in the 1980s, and I am very familiar with it because my oldest daughter had it and it left her with infectious arthritis which still flares up to this day. Getting a diagnosis was a nightmare, but when both of my other children developed the same symptoms, they were diagnosed with it also. Interestingly, my two daughters did NOT have the rash and have suffered arthritic flares ever since. My son had a head to toe rash and seems to have escaped lasting symptoms. I was tested and shown to have the antibodies also, although I never had the rash.
In 1993 I was diagnosed with Graves Disease. Both my daughters have had their thyroids checked, as well as others in my family. My younger sister is now being treated for hypothyroidism. I wonder if everyone in the family who hasn’t already been tested for B19 should be.There could be genetic and environmental reasons for so many thyroid issues in the family, but I think the parvovirus link should be investigated. Thanks for this article.
March 6, 2012 at 4:30 pm(10) Joyce says:
Hindsight for me is so interesting with this topic. 5th Disease is a very common childhood thing easily passed. Always says NO LASTING ISSUES. Baloney.
I have had fibromyalgia and chronic fatigue since a small child. As as with everything else from the 50s, we shared all the childhood diseases–only had polio vaccine during the scare and family members contracting it. Not till 6th grade and small pox innoc, then senior year, did we have immunizations to deal with.
5th Disease could have easily been what was one of the measles type illnesses we shared. German and red measles, mumps, chicken pox, etc all were had. One of 5 kids, approx 80 in the neighborhood–you know we GOT.
My thyroid has direct issues with my FMS/CFS and how I feel. I have to have a certain number to feel good. So my labs are done quarterly. And I alternate med doses qod. And my daily symptoms might mean the next days meds are adjusted. My pharmacist is in on this deal with me. My rheumatologist put me on to this. ALSO to the fact of controlling MENOPAUSE SYMPTOMS. Hot flashes for 2 weeks in doing the tight reign on the levels.
So the thyroid controls so much of what our brain lets go on with the rest of the body. I have had heavy thyroid issues since about 1992. Out of whack level put me in the hospital–elevated the BP where there was no issue before. Dr researched and said that was a bump in the road to know. I can tell from chest palpatations to running rapid pulse, to can’t keep my eyes open which levels i need to go to. Have to keep a daily chart. Also makes a different on the FMS/CFS levels of the pain and anguish. BUT also know that other meds, etc can alter the thyroid level. Have to be persistant.
March 6, 2012 at 4:31 pm(11) donna says:
Thanks very much for the interesting article, but now what? How is it to be treated? Is there a treatment?
March 6, 2012 at 11:48 pm(12) Fran says:
My daughter had fifth disease. I don’t remember myself having any flu sx at the time, but now have Hashis. Very interesting!
March 7, 2012 at 4:04 am(13) erin says:
I was diagnosed with Hasimoto’s 8 years ago after having my second child but have had RA for 22 years and fibromyalgia for 10+ years. I felt fine and only suffered joint pain and swelling. About 5 years ago I contracted parvo (from my pre-schooler) and have been battling all the classic Hasimoto’s symptoms since. I wonder if I didn’t contract parvo would my symptons have remained mild? Is this a case of chicken and the egg – does parvo cause Hashimoto’s, or does Hashimoto’s make you more suseptable to parvo? Will my 2 boys who also had parvo be more likely to have thyroid problems in the future? More research in this area is essential!!
March 7, 2012 at 8:32 am(14) Michelle says:
Question.
How does one find out if they had Parvo ?
Is there an antiviral treatment for Parvo ?
March 7, 2012 at 1:47 pm(15) Mary says:
Wow. I caught Fifth Disease from my niece when I lived in Oregon in 2001. I recall it was a moderately high fever and my joints all ached like I can’t even describe. I was 37 at the time. It lasted for a good week or so.
Since then I have suffered flair-ups of that same aching, especially when I get a cold or get run down. I have also been struggling with hypothyroid symptoms. I have all the signs, I have nodules and an enlarged lobe… But I cant get any help for it because my TSH is “normal”.
And now that I have a nodule with calcification, I have no insurance due to downsizing. Oy!
March 7, 2012 at 7:49 pm(16) Catherine says:
Wow Mary,
Now this is truly fascinating. I called my mother (a retired nurse with Hashimotos too) and she remembers me having measles-like symptoms without it being measles (the red-rash cheeks) and for her too when she was a girl.
This is the most fascinating piece on Hashimotos disease that I have seen in a long time. My mother and I often wondered if the disease is triggered by a virus (I had walking pneumonia really bad when I was 28 that lead to several bouts with bronchitis).
I look forward to hearing more about this. wow.
Catheirne
March 7, 2012 at 11:50 pm(17) Mary says:
I forgot to mention that my mother also has hypothyroid and kinda neglected to tell me about it until a few years ago.. Heh! When I caught “slapped cheek” from my neice back in 2001, I suspect that I was having some thyroid issues even back then and simply didn’t know it. I did not get the rash with my fever but the local pediatrition, when asked, said that it can present differently in adults.
Anyways, I suspect that it probably is a little of both when it comes to figuring out if it’s the cause or just a trigger. In my case I think it just triggered it to accelerate!
March 10, 2012 at 12:26 pm(18) Suzanne says:
So, the next question is how does one get rid of this nasty parovirus?
March 29, 2012 at 4:05 pm(19) Jill E says:
I’ve always wondered if there was a connection!! I had Parvovirus in 1998, and I was diagnosed (after an attack of thyroiditis) with Hashimoto’s in 2006. I also had 2 instances of uveitis (2002 and 2007). With every new doctor, I’ve always asked if they’ve known of any connections among these illnesses.
October 16, 2012 at 10:13 pm(20) Mary says:
For those interested in testing for parvo call Dr Dantini Ormand Bch Fl 386 673 7005 or visit his website. Tell him Mary from Fl sent you. He seems to understand this testing.
Good luck and keep searching
December 26, 2012 at 3:44 pm(21) Laurie says:
just got tested today, the doctor (not my doctor, the on call doctor) said it is a virus and it will run its course. did not seem concerned, just said if you go back to work with a fever, here are a few masks. can’t believe what i am reading. i have a rash everywhere and my fever was over 103 christmas eve. my whole body feels enflamed and i can’t take the cover off of my waterbottle. he said, test will be back in a couple of days and you won’t be sick by then. also, my daughter is pregnant and she is moving back to this state and living with me in two weeks. good thing that she did not come before christmas, like i wanted her to. i was in a room full of people including elderly and babies. the baby has no thyroid. already had the rash though. not to mention how many people come into my store everyday.
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Jenn said,
April 26, 2013 at 1:40 pm
Serena – were you ever able to look into changing the dates on the posts (to reflect 2013, etc.)? Again I am willing to help with copying over the entries if that is something you need.
J
Leslie said,
March 27, 2013 at 3:09 am
Hi, All… you all must be becoming my blog friends as I often look to see what certain responses have been and how certain others are doing… always hoping for good news or an inspiring story. A question for everyone who has the time and desire to answer:
As you may know from my recent posts, I have had parvo for two years now. I received some short-term IVIG treatment that in the end did not clear the virus. I remain DNA positive with a 6.7 IgG titer that doesn’t budge. Does anyone else know what their IgG titers have been in times past? Do you routinely have then measured? And do they coorelate to any pattern of recovery? I would like to have mine monitored to guage my recovery and think that would be a reasonable request.
Thanks for sharing!
Leslie
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Jenn said,
April 26, 2013 at 1:57 pm
Hello everyone – sorry to reply to Leslie’s message “off topic” but I don’t actually know how to post a new entry? This is a message I wrote on the Miranda blog yesterday (no replies yet), I am a Parvo Mom and have two Parvo sons and am needing some parenting advice…. here’s my post:
I contracted Parvo B19 from my then 4 year old son in August of 2012, he presented no noticeable fever, only the rash and maybe a little runny nose. I was completely knocked down, for me starting in my lower back but then I had the really high fevers, night sweats and the whole typical pattern of what adults usually have when they get their initial infection with the arthritis to follow, etc. It appeared to lay dormant for a while this Fall until I began feeling dizzy and generally “low” in late Nov. and then at Christmas time, both my sons (the other is almost 8) and I had a bad bout that seemed like the flu (persistent fevers, cough, etc.) and both boys had the lacy rash in a very pronounced way which they never had before all this happened. At that time, I had a full parvo relapse and became very, very ill and have not been myself ever since. My husband is totally fine, thank God. Since then, our sons seem to get little flares and low grade fevers when another (?) illness comes their way or if they get something at school, allergy season, etc. .
Recent DNA tests confirm Parvo is still showing up in my blood & I had whole bunch of other tests along the way to rule out other things (mostly because the various MD’s I saw wouldn’t believe me when I said I still had it so they were looking for cancer, etc.). I now mostly work with a holistic doc, acupuncturist, I changed my diet in Jan., take lots of vitamins and am on the right path to feeling better although in honesty I do worry about a relapse. My hope was that my sons were kicking this and that it was just me who is harboring it, but I just had some labs done on them (pediatrician said she didn’t like all their low grade fevers that seem to come and go) and lo and behold, positive Parvo DNA came back. Realize, my boys had “slapped cheek” initially as toddlers, so now at 5 1/2 and nearly 8 those are not the results I hoped to see. I was heart broken and cried for a whole day. Now, since I’ve worked to try and heal myself, I know what to do with diet – but I am still trying to figure out the best kinds of supplements for children (I switched to sugar free Xylitol sweetened vitamins and probiotics wherever possible). It has been very hard to cut sugar 100% out of their diets and I am seeking advice on what any parents here may have done with your children (can your kids have a “healthier” cookie once in a while or absolutely NO sugar ever?…do you allow your kids to have naturally sweetened juice? Any stevia products? Thoughts on using honey?), have you found supplements for immune boosting? (I use sugar free Elderberry syrup but it may not be powerful enough)? Have there been any treatments that worked for your kids? Their bodies are growing and I soooo hope they will be able to build immunity over this at some point better than I am able to at age 42. FYI, the 3 of us are very lucky, we do not have the chronic arthritic inflammation – for the boys as I said above it’s mostly just these little “flare ups” that come w/ low grade fevers, swollen tonsils and sometimes a little tummy trouble. And always when it comes, they have that darn rash on their legs.
Thanks for reading all this and any advice is gladly taken – we all know that we are the only ones who can help each other!
Jenn
Leslie said,
April 30, 2013 at 2:12 am
Hi, Jenn… It can all be so emotional, can’t it? Especially when it involves our children. I’ve NEVER been a crier… can count on one hand in many years pre-parvo that I cried about ANYTHING. Good natured, “glass half full” personality, and then chronic illness, chronic pain robbing me of my smile. Really trying to work on that. Anyway, about the diet thing. I didn’t let a single “grain” of gluten pass my lips for 3 months… read every label and sat at the table with family on holidays passing up nearly everything on the table because there were possibilities of gluten in dishes, etc., and it began to make me just miserable. Now, I was not only sick and in pain, but I felt so deprived and I hated parvo virus even more. My point being… no sugar ever? I don’t think so. There’s been so many diet recommendations that I’ve read about, and they’re all great points. I’ve incorporated several of them in my new lifestyle, especially supplements and vitamins. I’m “mindful” eating now and pass up the gluten (for example) when I can, but if I’m a guest at someone’s house or want an ice cream out with my kids and can’t be ABSOLUTELY sure it doesn’t have gluten, I’m just not going to add that burden to an already difficult situation. Just my two cents, but thought I’d respond.
Hope every day brings you closer to wellness:)
Heidi said,
April 30, 2013 at 10:25 pm
Hi there, I subscribed to this blog about 2 months ago when I was initially diagnosed with Parvovirus (Feb 2013)… I have learned so much by reading all these posts from fellow Parvo sufferers and it has helped me get through this difficult time knowing that I am not the only one out there with all these problems.
My story began about 2 1/2 months ago, in February 2013. I awoke one morning with a rash on the backs of my hands and pain in the joints at my wrists and fingers. I am 29 years only and I have NEVER had a single ache or pain in my joints until that day. I went to work, and as the day progressed the joint pain just kept getting worse and worse. I didn’t know what to think or do and by the end of the day the pain had spread to just about every joint in my whole body, I was writhing in severe pain, completely unable to move my arms or legs, my hands and feet were stiff and rigamortis-like, the pain was EXCRUCIATING throughout my entire body.. my skin was so sensitive that even the slightest touch OF ANYTHING threw me into a fit of overwhelming pain. I was terrified at this point and begged my sister to drive me to the hospital.
Once I was at the hospital, they saw me right away and ran a myriad of tests. (sidenote: I had recently found out I had a staph infection and had finished my antibiotics) The doctors thought at first that the staph infection had spread to my blood and I was at risk for a flesh eating bacteria…but my blood came back infection free. They told me that my “inflammation” marker was extremely high, as well as my C reactive, so they told me I most likely have an auto immune disease like Rheumatoid arthritis or Lupus (my mom has Lupus)..the doctors put me on a morphine drip and high doses of cortisone and anti-inflammatory’s and sent me home to go follow up with my primary Doctor.
Ever since then, I have spent most of my time visiting my doctor, getting poked and prodded and tested for every disease under the sun. After a few weeks of speculating I had Lupus, my doctor finally diagnosed me with Parvovirus B-19. I had tested positive for the virus at an extremely high level. My doctor put me on high doses of prednisone and put me on short term disability until my symptoms get better. My doctor weened me off of the steroids after about a month and within 2 days ALL MY symptoms came back in full force. I have been on a low dose of prednisone for over 2 months now and my doctor says we need to discuss long term treatment options as I cant stay on prednisone long term.
I still hurt every single day and cant do any of the things I used to do on a daily basis. I used to run 6 miles several times a week, I am also a seamstress and make clothes and various other crafts (i havent been able to do any sewing ever since I got Parvo….That is the hardest part, not being able to do the things you love most.
I have fallen into a deep depression with this debilitating illness, I only hope to gain strength to cope with my pain through the power of others. Thanks for listening!! xo
Leslie said,
May 1, 2013 at 2:14 pm
Heidi… oh, my heart just broke for you when I read your story. I am so sorry that you have suffered so greatly. As I have said before, I’m a stranger, yet I so understand. I wish compassion was enough to heal! I read through all the layers of posts, and they helped educate me, especially when I’ve been told my symptoms “couldn’t possibly be from the virus.” Then, to know others had the same symptoms (sometimes bizarre ones) helped redirect my thoughts away from the idea I had cancer or was dying…. because that’s how sick I’ve been. As far as meds, you may need to take some that you otherwise would have never considered (i.e. an anti-depressant). Discuss with your doctor which one is best to combat both the pain and depression. As I’ve seen Serena say to others, you’re still early in the parvo exposure and recovery period, so take heart that, with time, you’ll feel well again.
Blessings, Heidi.
vicky woodland said,
May 3, 2013 at 5:29 am
I don’t know how to post this for all to see. I caught B19 as a adult 20 yrs ago. RA, myalgia, fatigue… recently took only 3 tsps over the course of a day , of silver biotics by American biotech and I cannot begin to describe the change in me!! Their website is vague and for general public, but check them out on youtube, this stuff kills mrsa, tb etc… and i believe it killed some pathogen that was destroying me, perhaps B19.
Mary said,
May 1, 2013 at 12:29 am
Hang in there, your not alone. Get meds for the depression. That will help.
stacey turner said,
May 4, 2013 at 1:06 pm
Just wanted to send an update… I posted in this forum a few months ago while my husband and I were in Ukraine adopting two teenage girls. I got B19 about 1 year ago and had terrible pain in my hands and feet for almost 9 months. While in Ukraine it got really bad, and at that time I got a bladder infection. I bought some over the counter cranberry and other whole food tablets, drank more water than I thoguht humanly possible, and took about 10 times the normal doassage of Juice Plus (17 fruits and veggies in a capsule).
As i had shared before, my pain level that day was almost nothing. I got rid of the UTI, but over the next few days the pain slowly came back. I was under high stress and it should have gotten worse, but somehow for some reason, it got better and better slowly over the next 5 weeks. I continued to take JP (as I have for 10 years) but at a normal dossage. It has been a good 2 months now without pain and I am suprised and over joyed as I was really concerend about the affects of the stress we are dealing with two teenage girls plus our three younger at home.
The only thing I can say that I am doing differently is we are eating out way less (not that we did much before) but with 7 people, its just crazy expensive! In eating out less, I am cooking more and we are eating healthier with more raw veggies served at each meal (its the only way I can get the teenagers to eat them outside of Juice Plus).
I dont think I have any helpful advice other than we all need to keep our diets as clean as possible, take care of ourselves, and have the hope that our bodies can heal and beat this. I remember being in such a poor state of mind when I was in pain, and I am so thankful now ot be able to get out of bed and walk without stumbling in pain!
So hang in there, keep trying, and feed your body what it needs! Good luck everyone!
Stacey Turner
Gia said,
May 23, 2013 at 10:35 pm
Hi all. It has been a long time since I have written. First and foremost I want to apologize. I just did a control+f on Jeepers (my screen name) and it seems many of you have asked me questions in the last 2 years that I had never seen. I am so sorry. It is hard for me to follow. My email is jeepers06@hotmail.com which is easier for me so please feel free.
update- I stopped the ivig in November 2012. It did help with my arm and leg pain and some of the fatigue and headaches but it didn’t really help with some of the neurological problems I have been having. I do notice that stress and anxiety make my symptoms flare up big time. I was also blind sided with a separation/divorce which wasn’t helping matters. Anyway, here I am 6 months after the ivig has stopped. Am I better? I do see an improvement but it feels like baby steps. My family and friends have all commented that the color in my face is returning and I am happier overall. If I compare myself to 2 years ago I am definitely better but its hard to see the strides I make day to day. Sometimes I ask myself I I’m just used to the spaced out/off balance feeling. I did get a spinal tap done in Feb 2013 and it came back negative for parvovirus so hopefully this bad boy is on its way out.
I do still check in with my MS doctor and he wrote me recently and asked if he could present my case at an upcoming conference with other neurologists! HOW EXCITING IS THAT!!!!! he asked me to write a one page summary in my own words. I am so happy this is being exposed! He is very intrigued by my story with parvovirus and cognitive/neurological problems. If anyone wants my 1 pager please feel free to ask me.
Ok…so please email me if you’d like to speak directly. I will try and check this site also but some responses get tagged to other messages.
Hope everyone is doing ok and smiling! Summer is coming!!!
Cynthia said,
May 24, 2013 at 2:15 am
I became sick sometime in 2003. I couldn’t walk, but I don’t remember a rash. Just the fact that I couldn’t walk was enough to get me to the doctor. About six months prior I had some type of viral meningitis symptoms – was in bed for 3 (lethargic) and very sick for a few more days. This viral meningitis happened to be a week or so after a flu shot. I had a continual “headache” for months after until one day I woke up and couldn’t walk. I was tested right away for “Fifths Disease” and was told I had current antibodies and old antibodies to the disease. The doctor said I had contracted it probably as a child and again as an adult. (I was a preschool teacher at the time and I was told there were current infections of “fifths disease” and viral meningitis at my school)
I was told it would go away in about two weeks. It didn’t. Then I was told It could last 3 months, that turned into 6, then a year, and then two. After two I was told I will probably always have “problems”. So I was tested again and was told the virus is no longer active. I was sent to a Rheumy at the Mayo Clinic (My primary doctor is Mayo also). He said Parvo Virus can turn into Lupus. They played around with that idea (testing) played around with Fibromyalgia (didnt have the 11 points of pain) etc, etc.
Ive been on medication after medication. I finally got off all the NSAID’s. It was hard at first but I feel better not having to rely on medication. I still have pain. I still get tired. And I battle two types of Anemia. I never had any problems before Parvo. Since then I have had all types of problems and diagnosis. Some days my Anemia gets so bad that I feel like its going to “do me in”. Some days the pain is bad, but not as bad as it used to be. I am off all the antidepressants too. I have to take a ridiculous amount of iron and two types of blood pressure medicines.
After years and years of crying, wishing for my old self back, and just being depressed and sick, I decided I was going to take charge. I wanted to get better, I didn’t want to give in to the illness any more. I was always one to be active, so I started excersizing again. This time using weights. It was so hard at first. With one of my Anemia’s my blood doesnt oxiginate properly and so excersizing is a challange. I wanted to feel better so bad, that I kept it up through the pain. Eventually I got stronger and had less pain. Excersize does do something for the brain and body that pills just do not. I looked for anything to keep my outlook positive. I started feeling better. I went for 8 years in so much pain and I was doing better. When I slack off and stop the routine, the pain, depression and fatigue all come back. I know you may say to yourself “how can I excersize when It hurts so bad to move” Try it, as long as you are not injurining yourself and the doctor approves, its a good thing to try.
I also tried something called “clean eating”. I’m convinced that putting good clean foods into your body, doing the research about what kinds of foods cause your body to react to itself, and staying away from them, has its benefits.
Mind you, I still battle with pain and my amemia gets bad. But I know I can help myself feel better. I may never be the same, but I can feel better than before.
Best wishes to you all
Cynthia
Jennifer Clarke said,
May 24, 2013 at 4:16 pm
Thank you for your advice and words of wisdom, Cynthia. 10 years with Chronic Parvo, wow. I try not to let myself get down having a condition that causes so many different (and ever changing) symptoms but it is hard. The challenge of late is feeling like you are constantly having to wing-it holistically with a vitamin/supplement trial and error and are on your own through some sometimes scary/weird things that happen to your body that never did before Parvo! One thing I have not tried testing for yet is a blood panel to check specific food intolerances…I eat “clean” and have spent so much money and time seeking help already, just have to take it one step at a time. You are going to Mayo Clinic, and they said your virus was “no longer active” (ha!) I am assuming they are running a Parvo PCR DNA test, correct? Typically a facility like Mayo would also be able to tell you more than just a negative or positive DNA, but also how much viral load you are displaying (based upon how many “spins” it took for the virus to appear on the test). My ID doc at UNC said the test goes for 45 spins/cycles, if you will, so if your cycle number is higher (and closer to 45) then the presence of the virus is lessening, and if lower, the opposite. They consider anything over 45 cycles to be a “negative” result, although I know there are plenty of people here who have probably tested negative and have the same problems they had when they might have tested positive. Just curious to know what they were looking at there for you.
Hope everyone has a wonderful 3 day weekend! Jenn Sent from my iPhone
Barb said,
May 24, 2013 at 3:55 pm
Cynthia when I read your description I thought you were talking about me. I find it heartwrenching, depressing and hopeless with not having a direct treatment for those affected with parvo. I have been to NIH, Maryland, 4 rheumatologist, neurologist and none of them can given me any definitive answers. I too, suffer from severe anemia but I cannot take iron pills or NSAIDS due to gastric bypass in 04. Again, just like you said all we want is to feel normal again. I can’t tell you how many doctors think its in my head, drug seeking, psychiatric illnesses, and so forth. I believe that we all on this blog and other sites we should see if we can get some researcher, study, MD to start a real medical study regarding PARVO. So, lastly I wish I could tell you where to find answers and treatments surely I would share. Thought NIH (national institute of Health) Bethsaida, MD a Dr Young is doing a study on aplastic anemia as it might related to Parvo, I will kept you in my thoughts
Vicky said,
May 25, 2013 at 2:24 am
I don’t know how to leave a message for the general population of this blog.
The short version of my story is I took 3 tsps of silver biotics by american biotech several weeks ago and I am markedly improved. I contracted B19 20 years ago, developed RA and have been an invalid for a about 6 yrs.
Please, if you can, try this stuff. There are videos on youtube about it
Vicky said,
May 25, 2013 at 2:27 am
having difficulty with the format. As I was saying, I can walk and do chores, I have energy, Silver biotics neutralizes viral pathogens. please try and spread word to B19 sufferers and lyme’s and cfs, epstien barr etc. I have a new life!!
Leslie said,
May 25, 2013 at 3:24 pm
Thanks for your post, Cynthia. When I read “it all started in 2003”, I have to say it scares me to death. I’m glad ten years of the worst part of your struggling is behind you and that you’ve found ways to make your life happy and without as much pain. I wonder, do you think (based on your long experience) that the virus itself is less active… maybe even gone… or has your improvement been based on your commited lifestyle changes only? Have you ever been retested to have your IgG level evaluated and seen it drop? As Barbara said, I see myself in your words. First three months, then six, then a year, now two years. That’s me! Ughh.
To Barbara, I’ve read your posts before and you can just feel your pain and frustration. Do you actually STILL have parvo virus DNA or has the virus cleared your body with anemia being a lasting result? What was your experience like in WA and did they offer you anything in terms of prognosis for the future? Not many of us actually end up going to the NIH, and I wonder what they had to offer you in terms of knowledge about the persistent nature of this illness. It’s hard to believe that with chronic anemia there isn’t a treatment besides iron pills. That just supplements the effect… doesn’t treat the root cause.
Cynthia said,
May 28, 2013 at 5:19 am
To answer your question Leslie, yes, after 2 years I was retested and the the antibody levels for a current infection were not elevated. I only had antibodies for a former infection. I still had all the same symptoms. I personally believe that the virus is not there and does not come back. What I believe is that your body becomes trained by the virus to attack itself (autoimmune problems). The problems seem to move around and find a “new spot” to attack.
As for my anemia, I went to the Mayo.. Seen all the specialists. They only know that I don’t store iron. I’ve had tests after tests to see why, but to no avail. I recently researched an article about the low iron stores and there is a new study that suggest the body attacks the hormone that has something to do with storing iron. I was planning on taking this to my doctor. Just the same, I cant digest certain foods and the list is getting longer. I read something similar that your body stops producing enzymes to digest certain foods. I’m almost certain that it all has to do with the body attacking itself.
Barb said,
May 25, 2013 at 10:25 pm
No NIH had nothing to offer since I have ferritin anemia not aplastic, the only thing that helps the anemia is blood transfusion w/IV infusions of ferritin, decadron and bendaryl as we speak I am severly anemic. But due to layoff I now have no health insurance. I wish I had something positive to say about my physician interactions they all said since I do not have all the markers for lupus, I can’r have lupus or arthritis or fibromyagila, basically said I was drug searching, have maunscheun and theres nothing wrong. No my hematologist told me to get over it and refused to do a DNA virus check. So as of today I have nothing no control the chronic pain only taken my normal med and vitamins for the gastric bypass. Prior to April 09 I was in great shape nothing wrong now most days its a struggle just to get moving. I have found that I have a lot of muscle weakness, lost of generalized strength. I do hope you fare better than I this is why I am so thankful for this site. I even gave this site to my MD, as you can tell they thought this site “just feeds into my illness” nice, huh?
Vicky said,
May 26, 2013 at 12:03 am
My name is Vicky. After yearsof being a veritable invalid with B19, I took 3 tsps over a day of silver biotics by american bio tech (scientific videos @ youtube). It cured me. Please spread this word, I do know how to post something for all to see. Perhaps epstien barr, lymes, cfs etc, could also benefit.
Thank you, Vicky woodland
Leslie said,
May 26, 2013 at 3:35 pm
Barb… didn’t they do any testing at NIH to determine if you still had the DNA? I’m curious to know what testing they did do as they seem to be at the forefront of parvo vaccination development. Maybe if you knew you still had an active virus your doctor’s approach would be different. I too have terrible pain in the area between my knees and pelvis… the entire thigh area… that can be weak and shaky even now, two years after first contracting parvo. My doctors (and there are several) seem to sincerely acknowledge the role of parvo in my ongoing and difficult problems, but their sincerity doesn’t heal!! There simply is nothing to get rid of this. I’ve been reading the recent post of Vicki regarding supplements. I’ve been researching my area for a reliable homeopathic doctor and have some ideas. That’s next on my road down parvo. I’ve dead-ended everywhere else. I want to be well guided though when introducing supplements as I’m on a lot of other meds. An idea, though.
Vicky said,
May 26, 2013 at 6:44 pm
Hello again. there are youtube videos about how safe and effective the silver is. it destroys many pathogens. I am a different person after 3tsps in one day. now I take a tsp periodically. I know it’s a parvo and not a retro virus, but it ruined my life. I’d rather err on the side of caution.
Barb said,
May 27, 2013 at 12:52 am
Vicky, I had a gastric bypass and very limited in what I can take & it can cause serious results thank you for replying.
Barb said,
May 27, 2013 at 12:59 am
The did take lots of blood samples for Dr. Youngs aplastic anemia as it related to his work. No no DNA, I was surprise that it I waited longer to see a MD @ NIH and it was an resident he came in quickly asked questions and leftt. I to have most of the problems in my thighs had EMG studies done but they showed nothing. I keep up breast as to new parvo studies but the last parvo test said it was no longer detected. Such a “harmless” virus has taken my life away and return a weaken and defeated body and mind but not my stubborness. I just wish we could find someone that would take all of us on this forum and do a study. I am going to look into Cleveland Clinic again.
Vicky said,
May 27, 2013 at 1:24 am
Barb I am not thinking of you alone. I don’t know how to share this info with the general population, if I could I would. I was pregnant when I got B19 twenty years ago, I slept for 4 mos and could only take tylenol.
I had severe RA and the virus was so rare in pregnancy at that time the only facilility that would treat me was a special clinic at U of Miami. I had to have 3 ultrasounds a week to rule out anemia
Vicky said,
May 27, 2013 at 1:28 am
in the baby, who was positive for B19 at birth. I don’t have the patience to recite my health history here. All I know is a took this stuff and I no longer feel sick, weak,sore, swollen, confused. I can walk again.
If you know how to reach the others and share this possible cure with them please do. The youtube videos cover it’s safety and astonishingefffects
Vicky said,
May 27, 2013 at 1:30 am
I have difficulty with the format of this blog. I want this information to be shared with others. If you can help them please do. I don’t need support, I am trying to help others. thanks
Barb said,
May 27, 2013 at 5:47 pm
Vicky what happened to the baby any serious lasting effects? In my research I found the morality rate is high if B19 exposure in pregnancy, it was wonderful that there was even a facility for you to go to.
Vicky said,
May 27, 2013 at 9:43 pm
B19 is benign in children but the obstetrical care was a Kafkaesque nightmare. I went to a research clinic at Uof Miami that only had 14 patients, but the red tape was unbelievable because they rejected my insurance bc&bs with a hundred$ deductable and I had to go as an indigent filling out forms 3x a week.
I would like to reach the other B19 sufferers with info about the silver. is there a way to do that?
Cynthia said,
May 30, 2013 at 12:12 am
This is the first site I came across when I was sick. Some children do have problems.
http://www.angelfire.com/ia/Miranda/
Tam Wedgwood said,
May 28, 2013 at 7:08 am
There is a fallacy right there. B19 is NOT benign in children – often it is, but a percentage (especially girls, just as it is mostly females in the adult population) get these serious, long lasting symptoms. My daughter was 6 years old when she caught B19 she is now 19 and has had 13 years of ill health including joint pain & swelling; chronic fatigue, chronic pain, fybromyalgia, lupus symptoms. Two of her school friends who caught it at the same time & same age have similar health problems. When she was 15 my daughter spent 6 months of her life unable to get out of bed & missed nearly 2 years of school with these symptoms before physical therapy, pool therapy & dietary solutions bought her some life back.
You have to consider that doctors will also tell us it is “benign” in adults & “can’t possibly” caused these problems. You also have to consider that at first it may appear to run it’s course & the child recovers. No doctor looking at that child knows that in a few months or years that child will present with a recurrence. And when that child does present with a recurrence, we mothers are given the run around of tests for arthritis, lupus, vasculitis, Lymes, Chrohns, & they all come back negative… just as they do for you adult sufferers.
It is important that this site does not repeat the myths that we are so frustrated with some doctors for repeating! This disease is NOT benign – in children, or adults!
stacey turner said,
May 28, 2013 at 12:48 pm
The main thing I am hearing and reading from this blog is that we have to find a way to build our immune systems to the point they are balanced and not over reacting or fighting our own bodies. I am a strong advocate for Juice Plus, a whole food supplement (fruits and veggies in a capsule) that has been clinically proven to balance immune systems and reduce inflammation. I have found that the longer I or my clients take it, they better they do. Our bodies are designed to heal and repair, often it just doesn’t have what it needs to do so.
I urge you to look into this as there are no side effects and it has helped so many people personally that I know. It has digestive enzymes as well as probiotics that help the intestinal track to heal and accept the nutrition. I’m not even going to put my personal website on here because I dont want any of you to think that I am trying to “sale” something.
I have taken JP for 10 years, and cant say why my symptoms disappeared, but I am thankful my body was able to begin to repair and balance back out. I have been symptom free for about 2 months now (even though this is probably the most stressful time in my life ever) after a painful 9 months with Parvo.
There is hope.
Stacey Turner
505-419-1697
Vicky said,
May 28, 2013 at 3:48 pm
Silver biotics reversed, halted, stopped and erradicated my symptoms. That is the only reason I joined this blog was to share this information. I have just met Stacy over the phone and am going to explore Juice Plus to achieve optimum health.
In other words, if I learn something that may be useful I research it. It’s that simple.
Leslie said,
May 30, 2013 at 2:59 am
Tam… I’m glad you still check in and add your two cents… you and your daughter have earned them!!! I hope she is doing wonderfully well. I respect your knowledge and experience. I think we all who have gone around the “doctors” block a couple times know that even they impart fallacy; then we pass it on here. If your illness or symptoms don’t fall in chapter and verse, then you’re left to investigate and educate yourself. Talking here in this forum is so important to become familiar about the twists and turns the virus can take, how it’s affected others and yoursef; but then I think it’s important to research and cross-reference accredited journals and web cites so you can present to your doctors statements and articles they can respect… words from “their own mouths,” so to speak. I don’t think going into any office and handing over a blog converstion is a good way to engage a doctor’s interest. I basically prepare for an upcoing appointment so I know what I want to ask and am able to articulately have a conversation about why I think X,Y or Z is important based upon my research, although I sometimes just want to cry and say BECAUSE I’M SICK, THAT’S WHY! 🙂 I’ve haven’t yet had a doctor (and there’s been many) who haven’t answered my questions and been unkind. Quite lucky, I think, but also maybe because they now I’m ready to talk in the most informed way I possibly can. Two doctors actually have told me they learned something new toay. So, I think it does help.
Now you’ve had my two cents.
Vicky said,
May 30, 2013 at 3:02 am
before i found a cure i wondered if an infectious disease guy could have helped. what sort of docs to you all consult for B19?
Tam Wedgwood said,
May 30, 2013 at 6:17 am
Yes, I have gone to Doctors with print out of research articles etc from the web. 2 doctors have admitted that they learned something and did not know parvo could do this until they heard about it from me, so maybe over time (if enough of us keep doing this (: ) they will know about it & in future people will get more appropriate treatments/diagnoses as a result.
abbey balmucki said,
June 29, 2013 at 3:32 am
After 3+ years fighting an ‘unknown’ illness, I am now told tnat I have this mysterious chronic b19 virus. Thank you for this blog! I refuse to give up on my life w/o a fight and knowledge IS power.
serenamuse said,
July 1, 2013 at 10:26 pm
I sure hope it helps!
Get Rid of Herpes Review said,
July 1, 2013 at 10:20 pm
After I initially commented I appear to have clicked on the -Notify me when new comments are added- checkbox and from now on each time a comment is added I recieve 4 emails
with the same comment. Is there a means you can remove
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serenamuse said,
July 1, 2013 at 10:24 pm
I’ll try, but I think that is something you have to do on your end of things…
Mark said,
August 31, 2013 at 5:10 pm
I have dealt with “all of the above symptoms” since 2007. You could just imagine all the possibilities I have been told since 2007, primarily “oh your just depressed” and “here are some pills for that” But now I have discovered an old lab test from 2007 where my b19 IGG was 6.8 (and was never told of this) and a new test as of 7 days ago is now 5.9, I feel a door may have been opened for me. I have a follow up appt. this Tuesday and I will be prepaired !
Charlotte said,
September 21, 2013 at 8:25 am
Now I have been diagnosed with Raynauds Syndrome. It’s gotten a lot worse in the last few months. My new doctor has also had adult Parvovirus and has a similar story to me, she immediately understood exactly what this diseased does. The joint pain, myalgia, thyroidiitis, all so familiar. She is running a panel of autoimmune blood tests as she thinks I may have developed autoimmunity after the parvovirus. Anyone else had autoimmunity disorder if some kind diagnosed? My markers were all clear a year or so ago, but I was warned then that it might just take a while for them to show up.
stacey turner said,
September 24, 2013 at 2:01 am
As always with any immune disorder it is imperative to support and balance your immune system. I found that the cleaner my diet was, less man made foods, the better I felt. Again, I highly recommend Juice Plus as it is clinically proven to bring your immune system back into balance or homeostasis.
Just simply whole food nutrition, it is fruits and veggies and berries in a capsule. I’m so thankful I had that nutritional support while I was dealing with the chronic pain. my website is http://www.learnAboutJuicePlus.com or you can call me at 505-419-1697 if you have any questions.
So thankful for this blog because I remember feeling like I was going out of my mind and it was such a relief to know I was not alone!
Jennifer Clarke said,
September 24, 2013 at 2:34 am
Regarding the comment Stacey wrote about supporting your immune system….ABSOLUTELY. You might find you need some guidance in this, every person’s response to the virus is somewhat unique and their body’s immune system prior to getting the virus plays a factor, so many of us on this blog have sought the help of a holistic doctor/naturopath. They can help you figure out the particulars of your situation and guide you through the dietary and vitamin/supplement changes you will likely need to implement asap. I had never been really sick before in the way that Parvo made me sick, plenty of colds and unnecessary antibiotics in my lifetime and was probably undernourished too. But getting hit with parvo was on another level, someone once wrote when they got it they felt like they had been poisoned. I felt the same – almost thought I should check myself in the hospital because of how awful/low I felt, but I knew there was nothing they could do except tell me to take a pill of some sort and send me home. Instead I immediately dragged myself into a naturopath’s office and she got me on the slow path to rebuilding my broken immune system. A year later now, I am much, much better – but still working on it, it’s a balance and you learn what you can/cannot do. Take care – best advice is to start asap on making some serious changes to your diet if you didn’t eat a lot of fresh fruits/veg before. It’s a new way of living but you will be better off for it in the long run.
_____
From: Living with Chronic Parvo B19 Virus [mailto:comment-reply@wordpress.com] Sent: Monday, September 23, 2013 10:01 PM To: jclarke25@nc.rr.com Subject: [New comment] Purpose of this Blog
stacey turner commented: “As always with any immune disorder it is imperative to support and balance your immune system. I found that the cleaner my diet was, less man made foods, the better I felt. Again, I highly recommend Juice Plus as it is clinically proven to bring your im”
Sarah said,
January 23, 2014 at 10:38 pm
Hi Charlotte,
I also developed Raynard’s in my hands with the viral arthritis. I’ve always had it in my feet, but after the virus it began in my hands too. Fortunately, it has completely resolved with the medication I am on (posted my story at the bottom).
Sarah
tina said,
September 23, 2013 at 8:32 pm
I have had this for 3 months now. Constant everyday pain. Does anyone else get it in the chest area and ribcage? I have had cardiac testing (extensive) to rule out heart problems. Any treatment besides pain killers?
Jenn said,
September 24, 2013 at 6:05 pm
Regarding the comment Stacey wrote about supporting your immune system….ABSOLUTELY. You might find you need some guidance in this, every person’s response to the virus is somewhat unique and their body’s immune system prior to getting the virus plays a factor, so many of us on this blog have sought the help of a holistic doctor/naturopath. They can help you figure out the particulars of your situation and guide you through the dietary and vitamin/supplement changes you will likely need to implement asap. I had never been really sick before in the way that Parvo made me sick, plenty of colds and unnecessary antibiotics in my lifetime and was probably undernourished too. But getting hit with parvo was on another level, someone once wrote when they got it they felt like they had been poisoned. I felt the same – almost thought I should check myself in the hospital because of how awful/low I felt, but I knew there was nothing they could do except tell me to take a pill of some sort and send me home. Instead I immediately dragged myself into a naturopath’s office and she got me on the slow path to rebuilding my broken immune system. A year later now, I am much, much better – but still working on it, it’s a balance and you learn what you can/cannot do. Take care – best advice is to start asap on making some serious changes to your diet if you didn’t eat a lot of fresh fruits/veg before. It’s a new way of living but you will be better off for it in the long run.
Ray Odell said,
September 24, 2013 at 12:33 pm
Hello everyone you may remember some months ago I was the man that wrote his Dog bitch had Parvo and coughed into my face, unfortunately she died. Some one said oh it is not the same type of virus. I think I have a good immune system, but for many weeks i felt terrible, and it was not psychosomatic that virus, was trying to get into me, I was aching all over, including head and sore eyes, I know it does not help any one at the moment. I wounder if anyone knows what the difference is, in all this, between the canine and human virus or has the virus crossed over and effects humans now? something like the Aids virus that keeps changing its outer key shapes so the t cells cannot latch onto it! just a thought best regards
tina said,
September 24, 2013 at 1:27 pm
FLU SHOT??? I am supposed to get it next week but worry it’s going to make my Parvo worse and mess up my immune system even more. Have any of you had the flu shot and been ok??? Please let me know!!!
Charlotte said,
September 24, 2013 at 4:01 pm
I had the shot the year following my parvo infection and had a huge flare up – and my Dr told me in hindsight that I shouldnt have gotten it. I have never got it since, from fear of a flare up. I have just had a terrible flu infection though, and was out for a whole week. I am still not at my best, but hopefully over the worst. I still dont think I am going to get the shot. I am being investigated for autoimmune disorder too, so I am being cautious with immunizations for the time being.
Mark said,
September 24, 2013 at 3:13 pm
I am getting one next week also. Clearly our immune systems have taken a hit, but I figure if I don’t get it, possibly dealing with the flu on top of everything else – – – I’ll get the shot.
Seana said,
September 24, 2013 at 3:48 pm
I had parvo 4 years ago. 2 years ago I got my flu shot and had a horrible reaction. It caused my parvo to flare up and I was in pain again for a few of months. I was afraid to get the flu shot last year but went ahead and got it anyway (I have small children and felt that being in pain was better than being sick in the hospital with pneumonia which is what happened many years ago.). I didnt have any issues/reactions with it last year. I got it this year and my wrists hurt for about a week but that was the only reaction.
I know some doctors advise people not to get it, while some advise to get it. I think you are going to have to weigh out the pros and cons of the what-ifs in your life.
Chaundra said,
September 24, 2013 at 11:25 pm
I got the flu shot last year and I was in no way feeling as good as I am this year. I had no problems with it last year and will try again this year.
stef said,
September 25, 2013 at 1:28 am
I was diagnosed with parvo during my pregnancy and went thru the whole monitor the baby ultrasounds–My son is now 6 yrs old-I have my share of flare ups–today I am suffering with severe joint pain-My throat feels funny when i swallow I have a gag feflex-I have read posts on here about thyroid being connected with b19- I take thyroid meds. How odd that my throat is hurting and a flare up of joint pain is going on. I have never connected the 2 before. I wonder if taking a lil higher dose of thyroid meds temporarily would help?? As many of you I have been to DR after DR to explain PARVO and tell them I know its the parvo. I get NO WHERE. SOme even have told me thats what dogs get…OMG really – this is why we want to go with print outs in hand– im in hopes one day I will find a DR WHO IS interested enough to research for me. If anyone has a DR in the HOUSTON TEXAS area please share with me.
William said,
September 25, 2013 at 2:57 pm
Hi, we have a 16 yr old been fighting same symptoms for 15 months…I saw a post on her by a martha Dec 2012…that treated with Valtrex and said she was clear and been 2 months….has anyone see anything written by her or know her outcome? We also met someone just recently that had same symptoms and been sick for 5yrs, went to Duke and NIH and it was recommened that her tonsils and adenoids be removed…and she has been asymptomatic for 10 months…anyone done this? Please respond back…anyone taken Valtrex? And anyone had tonsils removed? William
serenamuse said,
September 25, 2013 at 5:00 pm
William, I’ve not heard of either treatment, but hope people will respond. I’m curious…
Jenn said,
September 25, 2013 at 5:42 pm
Can’t help you on the Valtrex, sorry. But you make an interesting comment about tonsils/adenoids, I brought my sons to Duke Pediatric ID group this summer – they never said anything about having tonsils removed. I mentioned to them that I have had weird things with my tonsils since getting Parvo a year ago (I now have persistent Tonsil stones, which I never had before) and they said it was probably unrelated. Of course. They don’t know! I also asked my GP about the tonsil connection – no guidance there. And finally, my holistic doctor said it was “probably due to a food intolerance” – she generally thinks most things are but I think that becomes a “catch-all” explanation at some point. I was going to look into having them removed, mostly because all the time I have to spend every single night on them. I will let you know what transpires, good luck with your daughter, it’s hard when it’s your kid going thru this, believe me I know.
tina said,
September 25, 2013 at 4:42 pm
Thanks everyone for your reactions to the flu shot. I am so scared to have it. I am not sure what to do. I think I will skip it. My daughter is almost 4 and in preschool so she could get it and give it to me. She gets the flu shot of course so I don’t know if that means I could catch it from her?
I started me own blog for my sanity’s sake. Here it is. http://parvosucks.weebly.com
serenamuse said,
September 25, 2013 at 5:01 pm
My doc said to have everyone around you get it…
William said,
September 26, 2013 at 9:43 am
We are going to the ENT this morning, we will update you later on the tonsils. We spoke to the mom last evening again of the child that had her tonsils removed. Her story is amazing…she removed them in Dec and her last episode was March, only two episodes after the surgery. She has had no joint pain, no soreness, no fever, no rash, etc., since March. She is 16 and dealt with this for 5 years. I hope we have the same response. William
William said,
September 26, 2013 at 4:12 pm
We saw ENT specialist this morning and have a tonsillectomy scheduled for next Wed.
William said,
September 27, 2013 at 12:30 pm
Has anyone been treated with anakinra? Our doctor wants to start us on this injection for Stills Disease. Anyone tried it?
William said,
September 27, 2013 at 2:42 pm
One more things, could you be so kind to let me know if you have tonsils or don’t have tonsils…doing my own research and we have a great group here to begin. Either on here or my email is salonattitudes@gmail.com
William said,
September 29, 2013 at 9:41 pm
Vickie, you were on her like in May 2013 said silver biotics cured you, are you still on here and are you actually cured? Hope to hear from you again. Jenny
stef said,
October 3, 2013 at 1:22 am
I finally found a Dr. in Houston that was familiar with Parvo–Today i had bloodwork and xrays–results on xray shows I have osteoarthritis and im still waiting on labs–starting meds Meloxicam and nexium. Hoping for some relief. I contracted Parvo in 2007 and still suffer from its disease
stef said,
October 18, 2013 at 5:24 am
got the lab results today–Its been 6 yrs ago I got parvo today my level shows 6.7 and vitamin d defiency and thyroid problem–the dr in Houston is starting a long term treatment–its antibiotics for the next year along with raising my vitamin d — i cant take nsaids they hurt my stomach so im in a world of pain for life i guess
William said,
October 3, 2013 at 4:34 pm
Our daughter had her tonsillectomy yesterday….we are hoping good results…to follow Jenny
Jenn C said,
October 7, 2013 at 12:41 am
Please let us know how she is doing – I had a consult to have mine out this past week. Really a bear of a recovery as an adult, a full two weeks.
William said,
October 7, 2013 at 1:09 pm
She had surgery wed…since surgery, no fevers! Did have the rash Sat but gone Sunday. We have our fingers crossed! And praying hard. She has done well but no cakewalk! Jenny
Kristin said,
October 9, 2013 at 2:39 pm
I’ve been suffering with chronic parvo for 4.5 years. Just went to a German doctor/chiropractor/homeopathic and he is using a type of frequency machine that helps eradicate all sorts of virus’ ailments, illnesses. He started with a hair analysis…and I’m learning all sorts of new information about toxic metals, potassium levels, the use of Celtic salt, nutrition and so much more that plays a part in our bodies not being able to heal. In doing research after I left I came upon a device called a rife machine. Please look it up and do some research. It sounds like it uses done of the same principle that this doctor is using on me and it may help many of us. There is no doubt in my mind that homeopathic treatment is the only way. Western medicine has NO treatment for us. I wouldn’t even waste your time with it. This doctor said he has worked with people with chronic parvo and they have gotten better in 3 months. I will keep everyone updated.
Jenn C said,
November 7, 2013 at 2:31 am
Kristin – did the rife therapy (is that what it’s
called?) help?
jlbonano said,
October 9, 2013 at 5:01 pm
Hi,
I was wondering if a rheumatologist could test for parvo virus and if so, what tests should be done.
Thanks,
Jenny
Linda said,
October 9, 2013 at 9:39 pm
Yes, any Dr. Can test for Parvo. It’s a simple blood test. When I first started having joint pain after it getting worse over a month, I finally went to my regular doctor and she ordered a bunch of blood work to check for everything that can cause joint pain and stiffness including RA. Everything came back fine except my parvo was very elevated. After months of pain and stiffness and nothing improved she sent me to a rheumatologist. I did two rounds of steroids, physical therapy all sorts of drugs and nothing helped. She finally put me on Plaquenil, an old drug used in RA patients. She said it would take 12 weeks to get the full effect of the drug. 6 weeks in the hip and groin pain were better. Now 10 weeks in and all my pain and stiffness are gone. I will stay on this for probably a year and then come off. I feel like a new person and i have no side effects. I wonder if anyone else has been put on this drug? It sure has changed my life.
Linda
jlbonano said,
October 9, 2013 at 9:54 pm
Thanks. But I’m wondering about chronic parvo. I’ve been dealing with chronic joint and muscle pain, fevers and I always know when I’m about to flare because I get a sore throat and start sneezing. I was diagnosed with Familial Mediterranean Fever, but I never felt like the disease was a correct diagnosis. I recently found out that I had parvo (never treated), but it wasn’t in the acute phase. Is it possible that I’m having symptoms that have lasted over a year and a half? How would I know if it was chronic parvo? The genetic test for FMF came back negative.
Jenny
Sarah said,
January 23, 2014 at 10:34 pm
Jenny – a negative genetic test doesn’t mean you don’t have FMF… the genetics of auto- inflammatory conditions are complicated and not yet fully understood.
I am sure my joint pain was kicked off by Parvo 19, and have responded really well to colchicine. My daughter has classic FMF symptoms and also responded well to colchicine. Interestingly, on the Facebook FMF board there is currently a discussion about the connection between FMF and auto-immune conditions such as RA, because co-morbidity of the two diseases is really common.
Have you tried colchicine yet? If you didn’t have a good response to the first brand you tried, this is really common in FMF. About 25% of FMF patients have a inadequate response to the first brand of colchicine they try. You still have a 75% chance of responding well to another brand of colchicine. If you live in the States you will need to source an alternative brand from Canada. I can put you in touch with the researcher who looked at brand sensitivity to colchicine in the treatment of FMF if it would be helpful. She is in the States and has an amazing wealth of knowledge about colchicine and about FMF in general.
Bye the way – she comments that ‘triggers’ have received very little attention by researchers of FMF, who have mainly focused on the genetics. However, she thinks ‘triggers’ are a very significant factor that really need much more research.
Certainly my doctor seemed to think my daughter’s condition and mine might well be connected, even though my joint pain was undoubtedly triggered by a viral infection. Bye the way, It took about 3 to 6 months on colchicine before I saw a dramatic improvement in my joint pain – the medication seems to have a cumulative affect. If i miss a dose, my joints let me know soon enough, but otherwise i suffer with very little joint pain these days. All the best, Sarah
William said,
October 9, 2013 at 10:50 pm
Linda, when you say your parvo was elevated, what were your lab results? Was it an active infection? Sydney’s Igg is high but Igm is not…so her’s is a past parvo…I guess a chronic past parvo that everyone is talking about…I would like to know what your lab results were? Thanks, Jenny (sydney’s step mom)
Linda said,
October 10, 2013 at 12:05 am
Jenny, the rheumatologist said she could mot tell if i had never been exposed before or not or if it was an active case, only that I had a recent exposure. I knew i had been exposed to the coxsaccy (spelling) virus which is a parvo virus about 14 days before my symptoms started. My grandchildren had it and so did my daughter. My rheumatologist did not feel it was necessary to do all the blood work because she said that it was clear I had an exposure and since almost everyone on the planet has been exposed to parvo, it wouldn’t matter what the numbers are saying. She also told me that since it is an autoimmune arthritis the proper treatment is with an RA drug hence the Plaquenil. I did two rounds of steroids, and other drugs. The steroids were wonderful, all the pain went away but then came right back. So she’s treating me with an extremely low dose drug that I can stay on long term. I can now work out again, bend my knee and walk without joint pain and stiffness. I also never had fatigue or any other symptoms that others speak of in this group. My only symptoms were joint pain in my hips, knee, shoulders and fingers. I was ruled out for RA, lupus, lyme and everything else except the parvo. The last blood work I had done about 4 months ago it was still elevated.
This sure is a nasty thing to get. I don’t wish it on my worst enemy but I’ve found a great rheumatologist and I’m now feeling wonderful. I still see her every 3 months and she is monitoring me. I pray it stays this way.
Linda
Jenn C said,
October 10, 2013 at 3:31 am
FYI, the test to run to measure the level of parvo b19 in your body is a Parvo B19 DNA test. This is a highly sensitive test and has to be sent off to one of I think only two labs in the US (one is Mayo and the other in NY I believe?). Igg and IgM are kind of a mute point once you are no longer in the initial/acute phases of the virus. We all know we HAD it acutely at one point, the point is how much is still there today in people who have chronic issues. Your doctor might need to have it drawn at a hospital if they are not a specialist, I had mine done at UNC.
The important thing is to get the exact measurement – not just “positive or negative” in your DNA. I think they are only measuring PVB19 viral load in International units now – which is confusing to read, I feel, but will tell you something more than what your Igg and IgM labs can.
stef said,
October 18, 2013 at 5:51 am
my level was 6.7 is that considered on the high side??i sure wish everyone would list where they see the dr at–if i am anywhere close to that dr I would love to go!! plz list where you are from
William said,
October 9, 2013 at 11:11 pm
Has anyone been treated with anakinra? Jenny
tina said,
October 14, 2013 at 3:20 pm
So, I went to see a pain specialist. He’s a Chinese doctor and his office also does acupuncture. I thought I was just going for an acupuncture treatment actually. I had a full evaluation and one of these tests was the 18 trigger points for fibromyalgia. I have all 18 sore points! He said he’s never seen anyone with all 18. He says I have fibromyalgia and prescribed me Lyrica for it. I am still shocked. Did my Parvo cause me to get fibromyalgia out of nowhere??? I haven’t taken the Lyrica because I read about all it’s side effects. Pretty serious medication.
Has anyone else here with parvo been diagnosed with Fibromyalgia?? If so, what treatment have you been given? And has anyone taken Lyrica? If so, what were the results???
Thank you.
Tina
Jenn C said,
October 14, 2013 at 4:01 pm
Many people would argue that Chronic Parvo B19 is often diagnosed as fibromyalgia (or Rheumatoid Arthritis) so they can put a name on it and give you a pill to take. Most of the time they really don’t understand what you have, so they just want to prescribe something. I’m kinda surprised an Eastern medicine practitioner would jump to that. But, that’s just one perspective, not knowing your symptoms. Acupuncture is always good to help restore balance to your immune system, but may not help you tremendously with inflammation in your joints. Certainly can’t hurt; I have acupuncture done all the time. Read about eating a low inflammatory diet if you aren’t already doing so.
tina said,
October 14, 2013 at 4:10 pm
I was surprised he prescribed me pills too. But he’s a full doctor and a PhD too. he also prescribed massage therapy and light physical therapy which they do at his office. I do agree that sometimes they just want to label it. The acupuncture helped. I actually slept that night.
stef said,
October 18, 2013 at 5:36 am
Got my results back today my level was a 6.7. Houston Dr willing to help and had knowledge of the disease. I am starting antibiotics long term for a year–its no fun being told I have osteoarthritis in 12 different places–I also have a vitamin D difiency–anyone else get this with it??? I caught the virus 6 yrs ago when i was pregnant and been dealing with it daily–it is the episodes of bone pain that get me down…I banked my babys cordblood and have been paying storage fee for it NOW im thinking it probably is not any good because it most likely contain the virus.
Jennifer Clarke said,
October 18, 2013 at 1:24 pm
Sorry to hear about your pain 😦 Why are you on antibiotics for a viral condition? That will really screw up your digestive tract being on them for so long. Honestly, I would get a second opinion, there are very few doctors who really know much about PVB19. The long-term antibiotic course would be more for someone who has Lyme.
And, alot of people are Vit D deficient, they say it’s pretty much rampant (thyroid stuff too). I was deficient too, took me over 6 months to get it in normal range. I take it every day. Sent from my iPhone
tina said,
October 21, 2013 at 6:16 pm
I just wanted to share an update. I have been going for acupuncture and massage for 2 weeks now. And also been on Celexa and Ambien (to sleep) for the same amount of time. I cannot believe but I am feeling less pain. It’s not gone but it’s tolerable and more of an all-over pain rather than centered to one area like my hip of ribcage.
As I said they diagnosed me with fibromyalgia. They prescribed me Lyrica but I haven’t taken it as I feel like the Celexa is starting to help the pain. This is after almost 4 months of constant daily pain from the Parvo i caught from my daughter when she had Fifth’s Disease.
I don’t know what the near future hold. I can’t go to acupuncture every week for the rest of my life. Well- I could but insurance wouldn’t pay for any of it.
Anyone else being treated for fibromyalgia caused by Parvo? Anyone tried Lyrica?
Jenn C said,
October 21, 2013 at 6:46 pm
They diagnose people with fibro to give them something to take for it – the fibro IS the parvo most likely. Call it what you will. Acupuncture helps restore balance in your body, to help you fight the viral issue. But you are right, we can’t go every day. Again, I suggest for you to look into healing yourself through antiviral/anti inflammatory diet….if you need help with this, then find a holistic doctor to guide you. Traditional medicine just doesn’t work for most people in our situation. They aren’t even researching Parvo anywhere and there aren’t any plans to do so.The diet is the harder road but it’s the best option I feel, read thru the older posts of this blog and you will see what I mean.
tina said,
October 21, 2013 at 7:27 pm
Thanks Jenn. I am looking into the anti inflammatory diet. I have started taking supplements for arthritis too.
AD1210 said,
November 3, 2013 at 1:53 pm
I have a long story and came across a test performed in 1996 that showed that I was positive for parvovirus then. I was only 18 at the time and didn’t know much, so I didn’t ask any questions of her. I was just told that it would resolve on its own. But looking back, that seemed to start a cycle of fatigue, insomnia, and mood issues that continues to this day. Shortly after that visit, I returned and complained of these issues. She ran more tests and found that my ANA was positive (speckled), which was the one and only time that that test came back positive. I am currently awaiting the results from a current ANA test from my infectious diseases doc. In 2003 I had the good fortune to treat with this infectious diseases doc for Epstein-Barr virus. Lyme and CMV were totally negative at the time. The protocol took two years and I was put into a state of remission. Fast-forward to this year when I returned to see him and my EBV was positive again as well as HHV-6 and HSV-1 (oral) as well as mycoplasma pneumoniae. We are treating the EBV and HSV, and have treated the HHV, but we are holding off on treating the mycoplasma for now. Since it’s a bacterial infection rather than a viral infection, my doctor doesn’t want to have me doing two things (antiviral and antibiotic). The protocol for treating mycoplasma is doxycycline, which I did before with a different doctor.
The other issue for which I am treating with this doctor, and the reason for my post, is that he found my IgG levels to be low. I did some researching and found that IgG infusions are the only treatment (so far!) for parvovirus. BINGO! A lightbulb went off in my head and I remembered that test from 1996. I am wondering if there is a link with this — perhaps the parvo makes the IgG levels in the body low? Anyway, I had my first IgG IV two weeks ago and now I notice this dry, itchy, bumpy rash on my hands and forearms. I’m wondering if this is a Herxheimer reaction due to the parvo being eradicated? Has anyone ever had experience with this? It leaves me hopeful for a full remission and recovery.
On another note, I have found that I carry a fairly common genetic mutation (MTHFR) that causes the body’s detox system to work at a slower rate. Just throwing that out there in case anyone wants to explore that. It might possibly explain why some people get an infection and move on while others get an infection and seem to have it derail their lives. The test was covered by my insurance and was performed with a simple blood test in the office. Alternatively, 23andMe has a full genetic panel that I intend to do in the near future.
I don’t know any of you, but I can definitely commiserate with the experiences. I hope everyone is doing well and that we can all kick the things that we are fighting!
Take care,
AnnMarie
serenamuse said,
November 3, 2013 at 8:46 pm
Thank you for sharing with us AnnMarie. I have not had experience with IGg infusions, but I know others have so hopefully they will respond. I will definitely look into MTHFR. I’d not heard of that. I’m on the west coast, but perhaps one of our bloggers from out your way will have a recommendation for a doctor.
Jenn C said,
November 4, 2013 at 6:42 pm
Thanks for the info – anything new that we can all explore/check out and come back and share is highly beneficial!!! We only have each other in this situation, that’s for sure.
tina said,
November 5, 2013 at 8:48 pm
Ugh, feeling alone and like this will never end. In my latest blog.
http://parvosucks.weebly.com/4/post/2013/11/i-overdid-it-and-an-update.html
Jenn C said,
November 6, 2013 at 1:35 am
Don’t feel alone – believe me I realize it’s easy to do! I notice you are taking meds a good bit, please be careful with that (I know you are trying to cope, but there seems to be no end game there and your body simply can’t take it long term)…..please read through some of the older posts on this blog for some guidance on building up/supporting your system in other ways (diet, vitamins, supplements, certain types of physical therapy, etc.).
adeis1210 said,
November 6, 2013 at 10:20 am
Thank you for the comments! 🙂 I am the mother of all “go-to” persons when it comes to “alternative” remedies. But this was something that neither I nor any herbalists/holistic docs/acupuncturists, etc., could even touch. My doctor is extremely cautious with what he prescribes and takes meticulous care with running titers on the viruses. He himself suffered a great deal from CFS and reversed it with antivirals and nutrition. He has turned away patients before, simply not able to give them the relief thyley need. In those cases, he refers them to an appropriate specialist. The titers for all viruses have dropped significantly and I am confident that I will be able to stop the medicine once they are under control.
As you can probably tell from my original post, I am a very thoughtful person when it comes to health — no amount of snake oil will do. I was simply wondering who here has had experience with IgG infusions and if they had any “die-off” reactions.
Thanks!!!!!! 🙂
AnnMarie
Jenn C said,
November 7, 2013 at 2:07 am
Hi Ann Marie – that last note about taking meds was for Tina….didn’t want to confuse you.
Hope you are doing well. All I can say is that I wish I had a doctor like yours who was working hard to figure things out for me, feel like I am kinda on my own to deal with it through my naturopathic doc and my acupuncturist …..occasionally will have blood work done through my GP or a ID specialist (for the Parvo DNA PCR). I am considering seeing an immunologist to look into things a bit further. Anyone have much luck with them?
adeis1210 said,
November 7, 2013 at 10:34 am
What is parvo DNA PCR? My infectious diseases doc hasn’t tested for parvovirus. I’m going to ask him at my next appointment. Annnnnnnd that level of care certainly does not come cheap — I pay put of pocket for him. He participates with traditional BCBS and that gives me a discount on services, but I still pay for visits andtests on my own. (I have BCBS, but not traditional.). He says that insurance companies dictate too much how to practice medicine, so he doesn’t take them. Still, it’s better than getting the runaround from other less-informed doctors. He is like Sherlock Holmes around here! 🙂 I hope you find relief. Dealing with chronic stuff is no joke and something that I wouldn’t wish on my worst enemy.
Take care!
Kristin said,
November 7, 2013 at 2:56 pm
As of right now I do not see a big change but the doctor told me is would at least be 3-6 months before this type of therapy can really work. So far the acupuncture has helped me the most…but even that took several months for me to really see a change. This virus had been in my body for almost 5 years now and I do believe that anything that is truly going to help will take some time. The doctor told me he has worked with people who have had chronic parvo and that this treatment has gotten them better but it did take several months for it to happen. I will definitely keep everyone updated as far as my progress goes….
Also do many of you also feel that this virus has caused you to have a type of meningitis hell going on in your body? I believe my virus is in my spinal column and has caused inflammation in my meninges. I have a constant flu-like feeling within me that stems from my spine….and if I exert myself at all with my upper body the pain will drop me to my knees. The pain at night is unbearable. The only relief that I have found is by taking narcotic pain pills and noritryptiline at night does help….There is def research out there that says that parvo can cause meningitis and encephalitis….I cannot imagine living with this forever. And I have hope that I won’t have to but until I find my cure I just keep being trusting and offering this suffering to Jesus and praying for strength to get me thru it all:)
tina said,
November 7, 2013 at 11:17 pm
Jenn- yes I am taking a lot of meds/. I agree, so many. I have taken Aleve for the pain almost very day for 3 months. My doctor prescribed me an acid reducer to take with it as she says it will protect my stomach from ulcers. Hope she’s right.
William said,
November 8, 2013 at 11:43 am
Jenn C, just to update, our daughter had the tonsillectomy 5 weeks ago…which helped tremendously….before surgery she would rate herself on a scale of 1-10 and ten being the worst…a 8 or 9 everyday practically for over a year. She now rates herself a 2 most days….she has not have a fever for 4 weeks, she has not been sore other than one wrist (when before we had to assist her in a sitting position in bed in the mornings) and she is only left with a faint rash and a few days here and there it itches. We know her inflammatory markers were very high prior to surgery and we know it is going to take time for them to come down. We are starting to change her diet, one thing at a time. She has had no fried food this week but her rash has not changed (I was hoping it would go away)…how long does changing her diet take to make a difference in her inflammation. We also have tremendously decreased sugar and white food, just not completely eliminated it. Just curious how quickly removing bad foods take to make a difference…I almost said this morning, changing the diet doesn’t help. Thanks, Jenny
Chaundra said,
November 8, 2013 at 9:49 pm
Changing diet will help tremendously! I have been at it consistently for over 9 months now and I feel such an amazing difference. I have felt really good for the last 5 months and noticed improvements within the first 2 months (including use of supplements!) My symptoms still remind me that I am not healed, but feeling 95% better, I can ignore what remains.
Jenn C said,
November 11, 2013 at 1:40 am
Jenny –
Sorry for the delayed reply. I really appreciate your keeping me in the loop. Helps me to make my decision about my own tonsils – which by the way, look totally different than before I got Parvo (like hollow shells of their former selves…isn’t that weird?).
I have to concur with Chaundra, diet is really, really important. When I was my very sickest, it was the only thing that got me out of a hole. Sugar was the hardest to get out of my diet even though I didn’t think I ate it all much, I was eating it in small ways all the time – but a little honey and dried fruit can help with her sweet tooth if she has one. I use organic stevia here and there too. And since I never suffered from the arthritis except one time, I don’t know as much about night shade foods avoidance, but I know that it is key if you have that type of inflammation. I feel most people on this blog learned the hard way that changing their diet to a “clean eating” philosophy does more than almost any other thing combined. Yes, it’s a lot of work, yes it can be expensive being gluten free (if you choose, as I have, except here and there) and yes high quality vitamins/supplements are important to help support your daughter as she fights this thing. And it takes time to see results, like at least a month – but your whole perspective on eating your food “as nourishment” will change. Don’t give up! Try to do it as a family, you will all benefit from it and feel better. Pick up some healthy cookbooks or magazines for ideas.
stacey turner said,
November 16, 2013 at 8:03 pm
I just have to say again, we need to fuel our bodies to repair. So many are quick to take a drug, but doubt the power our own bodies have to heal if we fuel it to heal. As many raw fruit s and veggie as possible each day, water, low or no sugar, and taking Juice Plus has helped me. Last couple of weeks I got off of my daily routine of taking it and my symptoms of inflammation started to return. Got back on, and within a few days I was feeling better. Iti s not a cure, but simply support. www. LearnAboutJuicePLus.com
tina said,
December 2, 2013 at 9:15 pm
Hi all, everyone says that they take supplements that help them a lot. Can you guys share what you’re taking?
I have added B12, turmeric and an arthritis combo pill with Vitamin D, boswella, Glucosamine Hydrochlorid, etc. I have also added cranberry pills for what seems like a persistent UTI but always tests negative. the turmeric is hard on my stomach so I can only take it every couple of days.
,
Thank you.
Tina
Jenn C said,
December 5, 2013 at 5:50 am
Hi Tina – I have had a lot of urinary issues as well that come and go (same thing, no UTI, but that constant pressure on my bladder that feels like one). Cranberry pills did nothing, and for me, I think that too many vitamins actually makes the situation worse while you are flared up in that way. One thing that helped me was drinking a thermos of 20 oz of warm water with about 1/2 lemon’s juice throughout the day. I shoot for two of those thermos, or at least 30 oz per day.
Dont’ overdo the lemon, drink regular water too – I learned that the hard way. When the urinary issue was really irritated, I cut back my vitamins a little bit until it was less flared. Also no coffee at all until you are feeling totally better, keep it to one cup even if you are. I did have a little weak black tea if I needed a little morning boost.
I also take an immune tincture from my holistic doctor – it is awful tasting, but it helps to support my immune system in a liquid form instead of a pill.
FYI – in addition to the tincture, my vitamins/supplements are as follows: “Phytomulti” multivitamin, omega 3’s, vitamin D (2,000IU), Klaire Labs Women’s Probiotic, Calcium-Magnesium Citrate and Olive leaf. I also take Colloidal silver about every day, 5ml. My issues from parvo do not involve the arthritis/inflammation of joints, but a host of other annoying things! I consider myself lucky, I had the inflammation at onset of the virus and it was awful. So, I my supplements are just for general immune support. Oddly enough, even though I am still having issues that come and go from Parvo, now I don’t seem to get the sinus infections/colds I used to get constantly because I am doing so much more to support myself. I could go on and on, but a clean diet and high intensity aerobic exercise (like a spin class) have helped SO much as well. I notice lately issues start to creep back within days if I don’t keep all this going but if I do it, I feel kinda like my old self more and more instead of my dizzy, Parvo self. We’ll see….
Hope this info is helpful.
tina said,
December 10, 2013 at 9:41 pm
Jenn, interesting that you’ve had the same issues. Sometimes I feel like my body is betraying me by having so many different parts of it acting up.
I don’t think cranberry pills were working. I stopped and feel better. So I don’t think I’ll take them anymore. I like the warm water idea. Deepak Chopra has that suggestion in his book perfect Digestion. It’s good for the digestive system obviously but I will do it if it helps my bladder/pelvic issues.
Thank you for listing your supplements.
yes very helpful, thank you!!!
Tina
Jenn C said,
December 11, 2013 at 4:47 am
Hi Tina – don’t forget the lemon juice in your warm water. That has really helped my stomach too. I bought a stainless steel thermos to keep the water warm all day and sip from. Best of luck.
Cathy said,
December 11, 2013 at 7:10 pm
For all of you that have had a Dr. look at you like your crazy when you say that you have been diagnosed with Parvo B19.
YOU NEED TO READ an article from the November issue of Readers digest ” My 11 yr. Engagement” the Issue is named “Are you normal or Nuts”
The article talks about a DR. that had Parvo…. it is VERY interesting!!!!! Maybe it could be found at readersdigest.com??
I have not posted in a long time, finding amazing results with NAET!!!! I feel like I have a life again 🙂
Take CARe, Cathy
Kristin Kohlberg said,
December 11, 2013 at 7:29 pm
Would you happen to know the name of the article??
Kristin Kohlberg
MATERIAL SALES CO 920 S. 2nd Street St. Louis, MO. 63102 Cell: (314) 565-1084 Office: (314) 436-1541
>
Jenn C said,
December 12, 2013 at 1:01 am
Can’t find it….what is the name of the article (you wrote issue, wasn’t sure what you meant)?
tina said,
December 30, 2013 at 6:20 pm
Anyone ever done a parasite/candida cleanse? I am debating doing one to clean me out.
Jenn C said,
January 2, 2014 at 3:25 am
I have not done this type of cleanse but have looked into them in the past….be advised that they can be pretty harsh on your system. Do your research and get advice before imparting on this type of cleanse. There are other ways to do just an overall good cleanse thru diet, not sure about the parasite/candida, but a healthy flushing out is always a good thing!
Sonia said,
January 16, 2014 at 8:31 pm
Hi all,
I have been reading through this blog and would like to add my own experience to the list, I hope doctors are reading this, we need help!
17 years ago,I was 3 weeks pregnant and diagnosed with German Measles as I had a red blotchy rash on my arms- a few hours later I had a cardiac arrest and my knees were locked. My mother gave me mouth to mouth resuscitation until the ambulance arrived. I had 5 cardiac arrests, one after the other in one night. My body was wracked with excruciating pain so much so that if I moved even my finger, my heart stopped with the shock. I thought I was going to die, so did the staff – My joints swelled to more than twice their normal size, knees, hands wrists, fingers, elbows etc,,Later I was diagnosed with a severe Parvo Virus infection and told that it attacks the muscle of the heart and the joints. I was then told that I was 3 weeks pregnant I lost my baby a week later. I was in isolation for 10 days in hospital. For years since, I have suffered with joint swelling and pain. I have also had trouble with my spine. Last April ,after a nasty chest infection at christmas I was feeling awful. I went to my doctor and he called an ambulance as I had very low blood pressure, low sugar level and a very slow heart beat, feeling dizzy and nauseous, swollen neck glands. After 2 weeks in hospital and many blood tests/ECG’s/scans etc etc they diagnosed Post Viral syndrome (also known as Chronic fatigue syndrome or ME) – it is now January and I have just had a second prolapsed disc removed. The MRI scan showed a degenerative spine with many other discs not in very good condition. They also had to unexpectedly remove some bone from my spine as they said the physiology of my spine wasn’t normal…?! It was my 50th birthday yesterday so Im not exactly old.
I believe that Parvo is a life long chronic condition and I have suffered many many episodes of joint pain, swelling etc and years on & off anti inflamatory medication. Fibroneuralgia is a side effect of the Parvo infection. I believe that Parvo virus is underrated by the medical profession and needs a lot more attention and research. Over the years I have read so many medical descriptions. None of them state this can be life threatening. Believe me it is, I nearly died.My baby did.
I am now also suffering badly with chronic fatigue syndrome too. Its like being hung over all the time. Horrible feeling…
With my first baby I contracted chicken pox for the first time in my life at 3months gestation.
With my second baby, I contracted severe listeria food poisoning.
With my third, Parvo (as above).
I believe therefore that it attacks people severely if they have poor immunity to begin with. I also believe it attacks tendons, joints and muscles for years afterwards, relapses occur when I feel run down or when the weather changes.
My dad suffered with pain after having a bad dose of shingles (herpes virus) and he had similar symptoms.
The immune system is definately the key I think… I believe a bone marrow transplant is necessary for curing the chronic symptoms as the virus (so I have read) lays dormant in the bone marrow. Parvo means small .. ii is a tiny virus (compared to other viruses) and can hide almost undetectable.. then flare up.
Over time joints become damaged I believe ,( like my spine) it feels to me like I have sand or glass in my joints, then they feel hot and sore..
The only time I was free of symptoms was when I ate very little for about a year and lost 5 stone.
I have kept most of the weight off, ( 6 yrs later now) but I eat a normal diet and the symptoms have returned..I feel old on the inside but still look young on the outside .. I eat lots of fresh vegetables/fruit etc.fish,a balanced diet. so I don’t know why.
I am going to try flaxseed oil capsules as I have read that they are very good for psoriasis and joint pain.. ( I have a small patch at the back of my neck). Psoriasis is also an auto immune condition..
Something is wrong with our immunity !!!!!!!!! I wish I knew what and how to cure it!! Im so fed up of it all………..Scientists please research more, we are suffering silently, no one else seems to understand or know what we are gong through or care.. doctors look at me and have no answers..!
Dogs are put down when they have this virus as it is one of the most painful deaths to have.
The human form may not be the same but it felt the same to me! I cannot state enough that this can be totally debilitating, painful and life threatening yet no one seems to know anything in the UK or be researching to make progress.. why not??
Sonia (UK)
Jenn C said,
January 17, 2014 at 9:59 pm
Sonia – what an incredible story. What you have been through is awful, I can’t even imagine. It pains me to say that it is very unlikely that ANY doctor is reading this blog. If they did, they probably just think we are all crazy, sadly. There may be many possible reasons why there is no research being done, some of them are frightening and I won’t even go into it here. I still say, we all just need to keep getting the word out in our own way. I have tried to contact the Nat’l Institute of Health here in the United States and it’s the same thing…no research, no interest, no funding for anything to do with Parvo B19…there used to be a vaccine on trial (too late for us on that!) but that got squashed and there no plans to anything in the immediate future. In part, there is also little awareness because it is often misdiagnosed…”joint pain/inflammation” can be caused by many things and many people aren’t even being tested for Parvo B19 that probably have issues from it. Plus, they can give you a drug for joint pain and send you on your way rather than trying to figure out why.
I say the best thing we can all do is to keep talking, writing and blowing our horns wherever we can about Parvo B19 and the many scary things that it can do to you. I am not ashamed and tell people all the time what has happened to me (and others if they are interested to hear). I have also said that when someone famous gets it, then it may be another story.
Sonia said,
January 18, 2014 at 6:21 pm
Hi Jenn,
Thanks for your message and I agree with everything you say but lets hope someone will see this blog who can actually instigate some research.
I am interested to hear why you think research isn’t being done… even if its doesn’t make nice reading…
Other comments on here recommend the blood test for gene mutation.. if no one has a known cure then why would this be worth doing, especially if, like me, I know I had it very badly..surely this is only for diagnosis.
I am in the UK and our National Health Service may not do this, I may have to pay privately for the whole cost.
I have been tested for RA but it was negative. My doctor says that arthritis is not curable and can only be treated using anti – inflammatory drugs. The joints in my fingers are now becoming deformed. I am only just 50! This cannot be normal surely? My toe joints are also becoming deformed.
I don’t agree so much with a comment I have read about us not “moaning” on here about our symptoms. I think that if we express our symptoms, similar patterns can be seen which may help diagnosis, treatment and cure in future. I think also that we need to see we are not suffering alone and that someone else understands.
When did you contract the virus and how has it affected you ?
P.S. I wish I was famous!!
Sonia 🙂
adeis1210 said,
January 17, 2014 at 12:35 pm
I would urge anyone having symptoms of parvo (or any other chronic illness) to ask their doctor tonteat for MTHFR genetic mutation/variant. It is fairly common and newly discovered (2002) and is being researched as a possible connection to chronic fatigue and lowered immunity as well as other health issues. It is a simple blood test that any general practitioner can perform. I think I paid $4.00 out of pocket after my insurance paid the bulk. I know of several good resources for more information if found to have the variant.
Happy Friday!
AnnMarie 🙂
stacey said,
January 17, 2014 at 3:06 pm
Once again I have to mention Juice Plus. Everyone is looking for something that is proven to improve your immune system. Juice Plus is clinically proven to balance your immune system. THe studies have been replicated and it is testament to the power of whole food nutrition. Juice Plus is 17 fruits and veggies in a capsule (think concentrated nutrition). Our family has taken it for 11 years and I really believe it is what helped pull me out of the vicious symptoms of parvo. Please take a look at it by visiting http://www.LearnAboutJuicePlus.com and watching the videos under the About page, and then Library. You can also read the actual medical journals on this site. I am open to talking with any of you any time, please feel free to call 505-419-1697. ““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““““`
Kathleen DelSignore said,
January 18, 2014 at 12:14 am
Hi all. In regards to juice plus… Been on it for a few years and it HELPS tremendously!!!!! Ran out and was upside down for a week until it finally came. I was opening the box as if it were a Xmas present! It’s one supplement that truly helps with this awful, ugly virus. Can we get a dr. To look at all of our blogs??? Someone other than us SHOULD start caring. So hard to advocate for ourselves as exhaustion is at the forefront of everything we do! I’ve lost my spirit to this illness. Trying to get it back.. love juice plus!! Sent from my iPhone
Sonia said,
January 18, 2014 at 7:25 pm
Hi Kathleen and Stacey,
Im not sure how much juice plus is in USA but in England it it about £100.00 to start with any of the products. This is so expensive here!
Sonia
adeis1210 said,
January 18, 2014 at 7:59 pm
Hi!
I wrote a couple of times about having a genetic test done to find out the status of MTHFR gene. This is an exploding field and will likely be one of big research as more become aware. There are other factors that come into play along with the MTHFR. Once known, it is simply a matter of correcting via food/supplementation/lifestyle modifications. It certainly is not information that is not useful! :). I urge anyone with chronic health issues to seek out this information. I learned of my own variant after my toddler son was found to have it. My general doctor performed the blood test and I think I paid $4.00 out of pocket after insurance picked up the rest. I am making arrangements to have a full genetic panel done soon via 23andMe to learn of any further abnormalities and to implement further lifestyle changes. Good health will happen!!!!! 🙂
Good luck!
AnnMarie
Sarah said,
January 23, 2014 at 9:35 pm
Hi AnnMarie – I thought 23andMe had stopped doing genetic health panels. have they started doing them again now?
Sarah
Kathleen said,
January 19, 2014 at 12:24 am
I never really checked the website to see if they ship outside the US. Juice plus is not very expensive. The official juiceplus.com website ships to your house, monthly , for $45.00. This is the only supplement that helps me!!!!!!!! Hope you can find it. Also check for it on amazon .
stacey Turner said,
January 20, 2014 at 1:36 am
Any of you are welcome to order online or can go to my personal website if you want personalized attention. The price is the same on either site, but If you want to participate in the Children’s Health study, a program where children ages 4-18 can receive their Juice Plus for free for up to 4 years, a representative like myself needs to enroll you. I have been working with Juice Plus for 11 years and would be more than happy to help answer any questions you may have and help you get started.
I am so thankful that someone shared it with me 11 years ago and I am on a mission to share with as many families as I can because it is proven to be effective! http://www.LearnAboutJuicePlus.com 505-419-1697
Sarah said,
January 23, 2014 at 8:37 pm
Hello, this blog is a great resource – I have not come across any other dedicated Parvo 19 forums – so thank you. However, this is the first time I have posted here. I just wanted to share my story – it would be lovely if anyone else could benefit from it.
Back in the summer of 2011 I came down with a virus while on holiday. I felt fluey, had a mild temperature, headache, sore tummy, off my food, felt very unwell, but most noticeably had really intense joint pain. After a few days, the virus cleared up, but the joint pain continued. It was mostly symmetrical, worst in the small joints of my hands, feet, wrists and ankles, with puffy hands and fingers and occasional swelling in my right foot and ankle. After about 3 weeks I really began to wonder what in the world was going on – i really thought this legacy or the virus should have cleared up, so i saw my family doctor who suspected viral arthritis and assured me it should soon clear up. I had never heard of viral arthritis before, and was glad to hear it was only a temporary thing!
However, by the following spring (2012), it was still continuing and my doctor referred me to a rheumatologist. He also thought it was viral arthritis, although he did tests to exclude other rheumatic diseases. He said it was unusual for it to last so long and reassured me it would soon resolve.
However, by the Autumn of 2012 I was back with the rheumatologist, feeling somewhat frustrated by the persistence of the joint pain. It was always present, but sometimes i would get flares in which the number of joints involved and the intensity of the pain increased significantly. I would also get this thing people call ‘brain fog’ and generally feel run down, like I was fighting off a cold or something.
The rheumatologist now decided it could not be viral arthritis, because ‘viral arthritis doesn’t last this long’. He decided to call it ‘soft tissue rheumatism’ and pack me on my way with more blood tests and mumblings about an open appointment.
Well, I am a therapist myself, and more than able to tell when a doctor is talking out of his bottom! For some reason, some doctors just find it hard to admit they know what is causing your symptoms, so give them a vague label along with an open appointment, hoping you won’t use it! I have seen this time and again with patients. The good doctors just admit straight up they don’t know and that they can’t help you.
I decided to see a private rheumatologist – one that specialised in sjogren’s, because i have also had some ‘dry’ symptoms over the years and had begun to wonder if all my symptoms were leading down the sjogren’s road. Because i was going privately, i could not afford tests, only the consultation. This doctor was very thorough and explained all his clinical thinking to me. He felt unlikely that I had sjogrens – I had the right symptoms but not with the extremeness he would expect to see from full blown sjogren’s. He also said it was a myth that viral arthritis always clears up within months ‘These viral things can rumble on for years’ he said. Not great news, but honest.
He also took my family history of illness and was very intrigued that my daughter has periodic fever syndrome. I told him her symptoms were brought under control by a medication called colchicine. He looked at me funny and i could see his brain ticking away. He wondered whether there may be a connection between my daughters illness and mine. He said he would not recommend the more intensive therapy rheumatic drugs. However, colchicine was used to treat many conditions and it was one I might consider trying if i felt my quality of life had been very affected.
Three weeks later I had another flare, and I made up my mind to speak to my family doctor about starting colchicine. I began on 0.5mg a day for 2 weeks, progressed to 1mg and a day for 2 weeks and then 1.5 mg a day. By 6 weeks the pain in my ankles had improved. The improvement was not as dramatic as I may have hoped, but just the improvement in my ankles meant I could walk more comfortably and that was worth it. So i stayed on the medication.
Then a strange thing happened. I started to go through a rapid succession of flares in my larger joints… knees, shoulder, elbow and finally hips. And then the pain disappeared from my large joints completely and has never come back! Over the next few months the pain and flares in my hands feet ankles and wrists gradually improved to the point that I started to have pain free days!
I have now been on colchicine for 12 months. I have many pain free days and my ‘flares’ are now equivalent to my ‘quiet days’ before – just one or two joints and generally not too painful. I have managed to drop my dose of colchicine to 1.25mg a day, and only take an extra dose if I have a flare.
My joint pain was certainly kicked off by the virus i caught on holiday. Given the symptoms I had at the time, and more over, the subsequent symmetrical nature of the joint pain I think it is almost certain that the virus was parvo 19. I can find no other reference to virus’s active in Europe that cause symmetrical joint pain. But i have not bothered to get a blood test to confirm – seems a bit pointless now. Whether my reaction the virus is due to a genetic tendency toward auto-inflamation like my daughter, i don’t know, but colchicine has just transformed my quality of life, and i wanted to pass on my experience just in case it helps anyone else in the future.
Viral arthritis is frustrating and distressing. I wish everyone struggling with this the very best. Sarah
Sonia said,
January 24, 2014 at 7:08 am
Hi Sarah,
I’m glad that you have found relief for FMF symptoms but I have to add a word of caution to others on here especially those with Chronic Fatigue syndrome. Colchine can be very dangerous with some very nasty side effects and sorry to say that it has been known to cause death . It can decrease heart rate and blood pressure which CFS suffers already have . It also interacts with many antibiotics and herbal remedies . In the Uk it is only prescribed for short term use of acute bouts of gout usually and Mediterranean flu .. Other long term side effects include diarrhoea and sickness .anyone on these tablets needs to be very closely monitored for the above reasons .
Sarah said,
January 24, 2014 at 9:56 am
Hi Sonia,
the funny thing is, i don’t have FMF. My daughter has FMF type symptoms, but i don’t – just this poly-arthritis / arthralgia.
I am in the UK and taking colchicine long term. It can cause side effects, like any medication, but it is safer than many meds on the market these days – certainly much safer than DMARDs.
It can cause death in overdose… it’s very like paracetamol / acetaminophen… fine in normal doses but quickly fatal in overdose. But it’s safer than say, NSAIDS like Ibuprofen which are responsible for about 2000 deaths a year in the UK.
I did experience loose stools on 1.5mg a day, but knocking it back to 1.25mg a day sorted that out and maintains it’s therapeutic effect. Any less and the symptoms come back! My daughter had no side effects what so ever – children do seem to tolerate it very well; babies too.
But it is one of those medications that people can respond to very differently. Even the brand you take can make a difference. Unlike many modern synthesised drugs, this one is a purified extract of the Autumn Crocus (which has been used as a herbal remedy going back to Ancient Egypt!). So if one brand causes bad side effects and little therapeutic benefit, you have a 75% chance that another brand will be better.
I guess i am lucky in that my fatigue has slowly improved over the past year. This time last year I would have to keep sitting down to take a rest from the constant pain on moving, and energy wise – I could manage to keep normal life running, but nothing extra. This year i have started decorating the kids bedrooms… an unimaginable project 1 year ago – i just didn’t have the energy to think about it, let alone do it!
My improvement didn’t happen quickly, it’s been a gradual thing, joint pain slowly receding with my energy levels being the last to improve – but they caught up eventually.
Because of my daughters condition i have been involved with many auto-inflammatory discussion groups. There are lots of different auto-inflammatory conditions; FMF is just one of them. But the striking thing is how many relatives also suffer from auto-inflammatory and auto-immune type problems – there does seem to be a strong familial tendency. My dad developed polymyalgia, which is also thought to be a virus induced auto-immune reaction. I think all of these conditions cause some degree of chronic fatigue with them; and yet this symptom seems to draw very little interest from researches!
I think there is a genetic marker strongly associated with chronic Parvo 19 illness, but i suspect even more will be found yet…. researchers are just touching the tip of the iceberg in understanding these auto-inflammatory / immune conditions. I suspect the next 20 years will bring a massive step forward in understanding these conditions and also diagnosing and treating. I the meantime we are left with just trying to manage the best we can. xxx
Sarah said,
September 12, 2014 at 4:32 pm
Just a quick follow up to my previous post. In spring this year – nearly 2 1/1 years after my initial infection, I decided to try going wheat free as advised for another unrelated health problem.
After about one month my joint symptoms no longer flared up if I forgot my dose of colchicine, and 6 months later I am off colchicine completely and feel I am finally in full remission of my symptoms.
Why my body has taken against wheat i don’t know, but I am now enjoying the best health i have had for over 3 years, since that coming down with that pesky virus.
Whether I will have to stay off wheat in the long term I don’t know yet, but I am not in a hurry to start eating wheat again – just enjoying my new found good health!
Best of luck to everyone who finds themselves here. Viral arthritis is horrible to live with – but there is hope! xxx
Leona Sherrell said,
May 9, 2014 at 11:47 pm
just found this site. so helpful, my son is 13 mons old and he was dignosed with cronic parvo b19 virus. they never really explaned it to us other then he will have this for the rest of his life and that he will most likely have outbreaks from it but wont be as bad as it was. his was so bad it was attacking his bone marrow causing his body to not produce antibodies and his white blood cells was down to 60 by time we got to childrens hosp. when we left yesterday it was coming up so we have to get regular weekly cbc test. but i still dont understand it 100 percent. and would like to learn more. what i read on the internet is kinda conderdicting to what the drs told me. also what else should i know? His dr told us no carpet, to give him a bath twice a day, no setting in standing water(basicly no bath baths) and no being around preg wemon. and he is not aloud to go out of the house till his cbc lvl comes bck over 2000. please help me learn more about this so i can help my lil boy. thanks.
serenamuse said,
May 10, 2014 at 12:43 am
Leona,
I’m so sorry yoru son is going through this. Not many of our members have posted about children, especially not that young. I find it interesting that he was diagnosed with chronic parvo virus, as it is very unusual for a doctor to admit to the possibility of chronic parvo B-19. Hopefully some of our members will be able to give you direction. Do you know where he picked it up? Was it at a nursery or day care? Usually children get Fifths disease, another name for parvo but tends not to be serious. Unfortunately no one understands it 100%. 10 years ago it was nearly impossible to find a doctor to properly diagnose Parvo, at least that was my experience. They have made progress, but I’m sure they are being cautious because there are so many unknowns. If his virus is active he can infect a pregnant women which could cause anemia to her fetus – likely ending in a termination of the pregnancy. That is why they are telling you that. Ask about diet. Give him the fuel he needs to fight the virus. As an adult that has been a vegan diet, avoiding processed, packaged foods, eating lots of fresh greens and legumes. As a child that young though you may want to contact a dietician.
Leona sherrell said,
May 10, 2014 at 1:43 am
yea we were seeing a speciolest in childrens and he said that he is 100% sure its chronic parvo b-19. his white blood cells was so low they thought he had lakimea 😦 thankfully he is getting a little better but we are actually having trouble getting him to eat at all. they have him on pedisure to help him get the nutriance he needs but other then that he takes a few bites and then he is done. they said that they have never seen it act like lakimea before but the cdc i guess told them it can. although we never talked to anyone but the two peds dr and the blood/virual dr. they never did the test but my hubby thinks that is what he had as a child and is now getting him test. the dr said he thinks he could have gotten it from the dogs that we have or gotten in the store from someone who had it or it was air born int he store. like i said every place we go to read about it is conderdicting to what we were told. at first they didnt know how he was going to do but we have our hopes that he will get better just hard to find the right info on it. and at first he never had the rash but then two days after being in the hosp he got a rash all over his chest and on his arms and legs and butt. that is when the speciolest put two and two together. he didnt tell us about his diet although no high protain. and he said that this is something he will have for the rest of his life and that most likely it will flair up but not as bad as what we saw. like i said we really dont know where to turn for answers. and he is the youngest to be dignosed with that in the state of ga. and was told only six cases of the strand he has in the usa.. but i dont know if they were talking bout kids or not.. its really scary everytime he goes to be i am scared he wont wake up. other then this site no other site has been helpful.
Leona sherrell said,
May 12, 2014 at 3:39 pm
ok my son’s dr is trying to tell me he is not contagus to preg women or anyone. and i am working on getting him to a diffrent dr. is there anyone who knows which type of peds i should take him to? like should i try to find him a speciolest ped? or what? This mommy needs some help. thanks
Mary said,
June 2, 2014 at 5:40 pm
test him for toxoplasmosis it is associated with Parvovirus B19 he should also be tested for hemochromatosis it has an association toxo comes from cats rarte meat vegetables wells wild animals it can produce a rash it is a parasite can be in the brain lungs muscel tissues skin can cause lesions in the brain ring shaped samples of blood must be went to a lab thaat is toxo familiar cdc recommends Palo alto location can be passedfrom mother to child causing autism club foot cleft palatte, seizures more….
Jenn C said,
May 12, 2014 at 4:17 pm
If your son is still having fevers from it, then that is not true and I would err on the side of caution (especially around pregnant women or people who are immunocompromised). Pediatric Infectious Disease specialists are typically the only MD’s who would know anything about Parvo B19, and even some of them may not be as well versed as one would hope. As there is no “cure” for this, I also recommend seeking the help of a holistic practitioner to help in guiding you to bring your son back to better balance after withstanding a severe viral attack. Although you will most likely not be able to use your insurance for that it will save you time in the long run, I hope.
Leona Sherrell said,
May 12, 2014 at 6:07 pm
Thanks so much. I’ll start looking around for drs in my area. I greatly aprecate it. Helps when u know what type of drs to look for. We r continuing to put the masks on him while we r out in public. I’m trying my best to keep myself together. Thank you again
sonia sullivan said,
May 27, 2014 at 6:04 pm
Hi Leona,
I’m answering from England to try to help clarify some things for you that I have researched over many years. I am very sorry to hear about your son and want to help so I have given straightforward answers.
I have a pharmaceutical background and have suffered with Parvo flare ups for nearly 20 years after contracting Parvo and having 5 consecutive heart attacks in one day.
Firstly human Parvo is not the same form as animal Parvo Virus. Animals cannot pass on their form of Parvo virus to humans, so it has not come from your pets.
This virus is usually passed on by air borne coughs & sneezes at school or nursery and in most young people has no effect except red cheeks for a couple of days, hence the term “slapped cheek syndrome”.
It seems to affect other or older people badly who for whatever reason have very low immunity.
I was 3 weeks pregnant when I contracted Parvo virus .. long story short.. I was told that the virus can cross the placenta and cause hydrops faetalis, water on the brain.
I lost my baby due to this.
I was told I was infectious for 10 days after the rash appears and was kept in isolation for this reason in hospital, so your son will not be infectious again after the initial diagnosis and ten day period.
The flare ups will only affect your son, they do not mean he will continually be infectious.
The flare ups will probably give him joint pain and inflammation when his immunity is low.
The best and only treatment is to do everything to increase his immunity system which includes a good diet with plenty of dark green vegetables, vitamins, dark red/ black fruit and vitamins.
For prevention of repeat attacks: “Sambucol”- which is black elderberry (it comes with added+vitamins C & zinc) is one of the best for supporting the immune system and is suitable for under 12yrs old, tastes nice and fruity too! and flaxseed oil capsules are the best help to protect the joints.
Anti-inflammatories can help also like ibuprofen, if he has an attack.
Unfortunately I know you are searching for a cure but there really isn’t one as yet as not enough recognition and research has been done to help the sufferers, hence why I hope some doctors look at this site and decide to do some more.
Many doctors do not understand how severe and debilitating this can be for people or even understand what it is and this is extremely fustrating. It’s like having arthritis. It feels like sand in your joints but does not show up on blood tests as arthritis.
In short, this is an immune response illness.
I’m sorry if this is depressing for you to hear and some people don’t suffer too much. I hope as he is so young that this will be the case for him.
Please concentrate on improving his immunity because it is when he is low that he is vulnerable to repeat flare ups of joint inflammation.
I wish you all the luck in the world and hope this has answered some of your questions directly and helps to clarify some issues for you.
Kind regards, Sonia
serenamuse said,
May 27, 2014 at 6:35 pm
Thank you so much for your comments Sonia. They are right in line with what I have been told. Keep putting in the healthy food! Is Sambucol useful for adults as well?
Sonia said,
May 27, 2014 at 7:36 pm
Hi Serenamuse,
“Sambucol Immuno Forte” is what I have been taking, it’s the best they make and has added vitamin C and zinc- the dose for adults is 10mls per day and for under 12’s 5mls per day and can be used throughout the year it says! There is something about black elderberry apparently that boosts the immune system greatly.
I hope this helps 🙂
serenamuse said,
June 4, 2014 at 4:21 pm
I have looked it up and printed out the ingredients to take to the chemist here to see if we have anything comparable. Thanks!
Jennifer Clarke said,
June 4, 2014 at 5:13 pm
It is also called Sambucus here in the states (I think Nature’s Way makes it) – not sure if that formula comes with other added vitamins (C, Zinc, etc.) might just be elderberry extract. They have a sugar free version too.
Sent from my iPhone
Linda rydin said,
May 27, 2014 at 11:18 pm
I can twll you what I’ve had relief with. i’m 52 now and when i was 50 in september 2012, i woke up in the morning with two stiff fingers on each hand and hip, shoulder and knee pain/stiffness. No rash at all. It progresssivly got worse to where it was so hard to get up and down from a sitting position. After a month I went to my dr. She ran blood work and it showed a high parvo number. Avout 10 days before symptoms i had a sore throat and slight runny nose. I found out my daughter who visited me that week end had fifth disease and so did her baby. So that was rhe exposure to parvo. I was told it will go away on its own. Well it didn’t. I could barely move or get up or down. My dr. Sent me to a rheumatologist. She put me on steroids and I got better for the 10 days I was on it. It came back. I did two more rounds of steroids each a month and each time it came back. Finally in July of 2013 she put me on a low dose of a rheumatoid arthritis drug called plaquenil. I sptarted to feel netter in 3 weeks. At week 12 it was all gone. I have been pain free since. She explained to me that its an immune response meaning the problem is your immune system not that I have parvo because I don’t. For some reason my immune system is reacting as if I have the parvo dor the first time and doesn’t shut off. So until someyhing rears its head in my immune system she won’t know exactly what is going on. But for now the drug is working. I see her in July and she may taper the drug down to see if i can slowly come off. The hope is the joint pain won’t come back but she says it may because my immune system is faulty. I’ve been worked up for ecerything including Lupus and nothing shows off. I just wanted to share with others that maybe you could tey the plaquenil. It costs me $15 per month and I het the generic version. I take it twice a day and she says its a low dose. I have had zero side effects and I’m living a normal life exercising four days a week and no joint pain or stiffness.
This is just info if it can help others.
Thanks, linda
Tracy said,
July 24, 2014 at 5:12 pm
Is anyone still following this? I am a male of 47 years old and I have been ill for about a year at least. I actually think this started 10 years ago. I caught a fever that lasted a couple of weeks. I tried to ignore it since I was driving back and forth from Houston Texas to Boulder Colorado doing job interviews. Needless to say I never got a job at that time since they all must have thought I was very odd seating so much all the time. My doctor in Texas said I had West Nile Fever, but I could not afford the test. The last year, from about July 2013, I have had hip pain that actually got so severe last October 2013 I went to an orthopedic surgeon. Since 2006 I’ve had surgery on both elbows, both shoulders and my left ankle. All but the ankle was somehow torn soft tissues in the joints. Since then, I spent 3 months on prednisone that made me so sick I don’t remember Novemeber through about half of January 2014. I started feeling bad again in May, though I never have felt right, and FINALLY I got a doctor to believe me and test and confirmed I have at least HAD Parvo and now also have Mono. I will be going to a specialist Monday. I have been thinking I am crazy and feeling so bad for so long, I’m not sure what good feels like anymore. Are there any men on this blog? I’m not sure what to think and scared as to what might be going on with me. How in the world did I get Parvo? Do I have, or have I had it in my body for all these years? After I had that virus 10 years ago, I would get a bout with fever every 3 or 4 months. they eventually became less often and lasted fewer days until the last one was only 24 hours. Now I have pain all over in my joints. Especially in my hips, knees, fingers and lower back now. Also I woke up about 3 weeks ago with what feels like carpel tunnel in my left wrist. At least I know I’m not crazy and I have been having fever most days. Any help or input would CERTAINLY be appreciated if anyone is still following this. Thank you.
Sally said,
July 26, 2014 at 5:26 am
Not a guy, yes still check this site from time to time for new information. But how strange – I too in July 2012 was diagnosed with parvo, west nile, and mono (also had bad cough that turned out to be mycoplasma -dx and treated 8 months later. You are not crazy. These illnesses wreak havoc on you. From my own personal experience all I can say is rest when you have to, take pain meds for joint pain if it helps, do not overdo it when you have a good day- you’ll crash and burn for days, keep joints moving (found swimming to be very helpful), eat and drink the healthiest foods you can, you might look like the same you but anyone who has gone through this will understand that you may look well but you’re not. It often takes a long long time to get better. For me I felt better after a year and was doing great, caught influenza and meningitis on the new year and was down for over a month. I popped back from mid Feb 14–May 14 and am now feeling exhausted, worried about the relapse, and joint pain is back. I would say a major stressor played a role in its return (maybe coincidental). That’s why I’m back on here. It’s miserable but the best thing you can do is accept limitations and take care of yourself (REALLY) or you’ll get sicker. Find pleasurable things to escape (a really good book or show or movie to watch when you’re in the bed). In a desperate effort to want to feel better I researched everything from IVIG treatments (expensive, no guarantee and not without risk) to drinking bovine colostrum. You can look those if you’re interested. I did think that drinking green fruit smoothies helped some- easy high nutrition when you’re too tired to cook and don’t have much appetite. Alcohol even in very small amounts made me crash and burn. Will check back soon. Hope this was helpful.
Libby said,
August 28, 2014 at 6:27 pm
Hi Tracy,
For me it was July 2010 (I was 51) and I was waiting for a delayed train. I’ve had some osteoarthritis in my knees for many years so I’m used to some discomfort, but in the course of 30 minutes I went from being a little stiff from the weekend’s activities to very nearly not being able to stand up. I could barely walk and the pain was intense (and anyone reading this understands what I mean!). Over the next 3 days the pain and swelling spread symmetrically to my ankles and hips, and my wrists and hands. The swelling equated to 15 pounds of fluid. I was worried and thought it could be Lyme’s disease so I went to a clinic. The resident who saw me was, fortunately for me, being overseen that day by an infectious disease specialist who ordered the blood test for human parvovirus B19. So it was identified promptly (one test tells you if you actively have the virus, the other if you’ve ever had it). I probably got B19 either at the grocery or a bowling alley I had been to – it is transmitted much like the flu and last I researched it, is contagious for about 3-5 days before the symptoms show up. Basically there is no initial treatment other than NSAIDS for the inflammation and pain. Most youngsters who get it are mildly sick for a few days. About half the U.S. population has had it, most don’t even know it.
Then there are those of us reading this blog, who are the minority who have lingering effects, and as you know those can be severe. Apparently the largest group of long-term sufferers are women who were middle-aged when they got it, followed by men who were middle-aged when they got it. I agree there hasn’t been much research (it’s only a relatively recently-discovered, mild childhood disease after all, right?!!!). I was surprised to see the doctors immediately diagnosed Leona’s baby with a chronic tag when he still had the active virus. Maybe there were other factors, but I really hope they were wrong about that.
It took 8 months for me to be able to walk almost normally, and for my wrists and hands to return to pre-B19 size. I have continued to experience flare-ups mostly in my knees (excruciating) and also into my hip joints. But I am fortunate in that most of the time I just have low-level pain in my knees, along with pangs and stiffness particularly when I start moving. Clearly, my days as a competitive athlete are gone!
I am having severe issues with my knees this week which is why I came back here to see what’s new since I last looked. I am intrigued that others have pursued the same path I am on, which is nutrition. In fact I’m wondering if my current issues were triggered by my having indulged in some treats with high refined sugar content last week. I try to eat more natural, less refined foods and eliminate artificial ingredients and artificially created ingredients (high fructose corn syrup, for example), and I focus on lots of fruits and vegetables. I take glucosamine sulfate for my joints and milk thistle to help my liver combat the effects of the NSAIDS, which I try to avoid but when I can’t function because of the pain I take what is necessary.
I agree with Sally on learning to relax and recognize and live within your limitations especially during bad times. I believe that if I never push myself, I will lose more and more joint functionality, but I also know that if I push too hard, especially when they are really bad, it will make things worse, and I will be worse for a longer time.
I hope by now you are feeling better and some of the other conditions knocking you down have been addressed so you only have to deal with the parvo effects. That’s hard enough. Good luck –
Nin said,
November 30, 2014 at 12:50 pm
Libby, it’s as if I had written your post myself! It’s good to know there are others out there experiencing the same thing, although I sincerely wish we could all get better and stay well. I have a great diet that really helps – I will post some information about it further down on this site. Good luck to you too!
Charlotte said,
August 22, 2014 at 3:43 pm
Does anyone know if there is a link to having difficulty conceiving and having had parvovirus in adulthood?
Angela Massey said,
September 24, 2014 at 7:41 pm
Have been sick my whole life. me and my sister have a clotting disorder. We both have lost babies. I have tested positive 3 times in my life. Had chicken pox 2x and shingles. At least 3 flares year. I am a carrior of strep and never get it but end up with sever respitory infection!
Ashley said,
October 30, 2014 at 5:05 pm
I’m 22 yrs old & was diagnosed with parvo last winter. I had a fever, then a few days later I broke out into this warm tingly rash all over my body… coincidentally I had a physical that day, and my doctor tested me for parvo… the test came back positive. About a week after the rash I had SEVERE pains in my wrists and fingers. They felt like they were falling off!.
Anyways, after a few days I was feeling better and the pains were gone(thank god!) but I’ve had some unusual symptoms ever since and was wondering if anyone else has had this problem…
I get a cold-like sickness every three weeks that always seems to begin with a few days of being extremely tired & a tingly-rash feeling in my hands and face. I don’t actually get a rash, but my hands become tingly, warm, and swollen. Then a few days after that I come down with a cold with terrible congestion that lasts for about two weeks. This never happened over the summer, and I thought I was free from it. Now that it’s getting cold again, I’ve had two colds over the past month and a half! I started taking vitamins and hopefully they’ll work some. JW if anyone else has had this.
Nin said,
November 30, 2014 at 1:28 pm
Hi everyone,
I caught Parvo 5 years ago in 2009 when I was 30 years old. Like the rest of you it began quickly with a rash, followed by extreme fatigue, arthritic pain and swelling in almost every joint in my body. My jaw was so bad I couldn’t even get a spoon in my mouth! I would also fall asleep in public… I was undiagnosed for 9 months. Needless to say, it was terrifying. Unable to work, walk, or even cut vegetables with a knife, I had to move back in with my parents and face a lifetime of disability and poverty. Fortunately, after many, many visits to various doctors, I found two who were able to help. One diagnosed my Parvo virus and put me on Prednisone. The other changed my diet to treat the arthritis. The medication and diet in unison worked wonders (the Prednisone without the diet is not enough – I tried). I was able to start gentle physical therapy sessions and was walking again within weeks and fully recovered within 3 months. However, 4 months later I had my first relapse. Over the last 4 years I have had 3 major relapses and a couple of smaller ones. I am battling one right now, which is why I am here sharing my story, but I am able to recover each time by employing the diet and the Prednisone (for a relapse I take 10mg per day for 2 weeks, then, if I am well, I gradually diminish the dose). Occasionally, I am able to beat a small relapse through diet alone. I really recommend this combination, but please, do not take Prednisone without a doctor looking after you – it is a strong drug with many serious side effects, which is why I avoid it when I can.
I have been told that the virus affected me so badly because I am an adult woman with an auto-immune disorder (coeliac disease).
The relapses occur when I am under stress or when I am very busy and pushing my body too hard. It is difficult to be 35 and know that you can’t go out more than one night a week without making yourself sick again. I even had to change careers. Previously I was an opera singer – an occupation that is now too physically demanding for me to continue.
Here is the diet – it is designed to reduce the pain and swelling of arthritic joints. It’s very strict, but it works really well (for me at least!) and has the added benefits of bringing you to a good weight and giving you extra energy.
No nightshades (tomato, potato etc)
No gluten
No processed sugar
No citrus
No dairy
No red meat
Basically, I eat chicken, green vegetables, carrots, corn, rice, beans, nuts, apples and pears. I do this until the pain has gone, then slowly bring everything back into my diet. It is worth it!
I wish you all good health.
Daniel said,
December 26, 2014 at 5:54 pm
Hello everyone, I’m from Chile and I suffer from this nightmare.
Nice to find this blog and sharing our experiences, will be very useful for everyone.
My story is very similar to many of you, about seven months ago I was diagnosed PVB19 fortunately was diagnosed relatively fast, the problem is that it never seems to go away, I was under observation once a month with constant sampling to know my blood levels of IgM and finally a week ago this came out negative, but unfortunately it does not end here, I still have pain and inflammation, not as intense as before and notoriously these are decreasing very slowly.
My question is what to expect once the IgM is negative? my doctor just tells me to wait and continue only with anti-inflammatory.
If anyone has experienced anything like me would love to hear about your experience.
Strength and Greetings to all
Daniel
Sally said,
January 5, 2015 at 2:49 pm
Just a little parvo update for those of you suffering. I know your misery. Diagnosed with parvo and west nile at same time after sudden onset bilateral poly arthritis in July 2012. After 2.5 years I’ve learned a lot – what worked for me and some things that have worked for others. One I wanted to pursue but couldn’t due to cost and inability to find a doc to administer treatment. List of what helped me, what others have said helped, ones I’ve tried or not.
1. Pacing/rest when you need to period. Very important. If you have to sleep 18/24 hrs then so be it. If you over do it when you feel a burst of energy, you will have what I called a crash and burn afterwards putting you back in bed with fatigue and increased pain for 2-3 days – 2 weeks. Getting out when you feel good is important but stop before you start feeling tired.
2. Avoid unnecessary emotional stressors as much as possible, it will drain your reservs as much as physical exertion.
3. Distraction with pleasant things if stuck in bed. Reading great book, music, a good tv series, anything you enjoy that distracts you while awake.
4. Very important was diet. I had decreased appetite so at first I just ate what felt good going down – any nutrition better than none. For me this meant a lot of ice cream – fatty yes, but still some calcium and protien. Later on when I had energy to learn to make smoothies, these were very helpful. Experiment with combinations of yogurt, kale, spinach, pineapple, berries, soy milk, bananas, beets, mangos, apple, etc… Try to keep it fresh/organic, or frozen/organic. Pineapple and mango are great for covering up veggie taste if you like sweetness. You can add ground flax, nuts, etc… I could definitely tell difference when consuming high nutrition smoothies.
5. Supplements- see if you’re deficient in D and B vitamins (blood test) I was D deficient and a plain multivitamin doesn’t have enough D to catch you up if deficient. Takes a couple months of sunshine and/or 5000 iu D caps. This helped when I corrected deficiency. Also things like omega 3 fish oil, a multivitamin if your intake is poor are good for most people. If something nauseates you, don’t eat it. For me that was too much meat. Only bites for me. Listen to body.
6. Any alcohol made me feel terrible next day or 3, even 1/3 glass wine for a while.
7. Tried Soverign Silver after a few tsp of aloe juice, (to lower viral load) as some have reported help, but I didn’t notice much, but I wasn’t very consistent so I can’t say for sure.
8. Some have had success with GET (graduated exercise therapy). With the exception of short walks and swimming in a nice warm pool or ocean on calm day, this made me worse.
9. Tried antiviral Tamiflu (off label use, but doc willing to try), but couldn’t tolerate due to nausea. Others have said some luck with other antiviral meds.
10. Massage was wonderful in alleviating symptoms for a while. I’m
Sure it was also helpful w /circulation, lymph movement.
11. Stay away from processed foods period as much as possible
12. Therapy – it’s not in your head but to be able to talk to someone helps, because eventually you’ll feel hopeless if stuck with symptoms for a long time or keep relapsing.
13. IVIG (intravenous immunoglobulins) treatments- wanted to try but couldn’t find provider/ not without cardiovascular risks but I’ve heard helpful.
14. Colostrum (bovine) – another I researched and wanted to try but didn’t because only could find in powdered form at time (not so helpful from what I researched ) Also not without risk of having unpasteurized dairy, but if you can find dairy farmer or company that will give or sell you fresh colostrum, has many many antibodies . Far out there, but I would imagine human colostrum from someone who had parvo (many people without even knowing have ) would be as or more beneficial to help fight viral load (still someone else’s body fluids so must be disease free)
15. Methotrexate – tried 5 rounds and didn’t help me but doesn’t mean won’t help you. ( harsh drug too- didn’t want to take for long).
16. Steroids. Many report success. I didn’t use because have had to use for other things and oral steroids don’t agree with me. There is also potential for rebound effect. Steroids lower immune system response (hard to say whether prolonged parvo symptoms are overactive immune problem or if you need help fighting it), but I didn’t want to decrease ability to fight infection.
17. Never tried but have heard minocycline helpful for some.
18. This is not in your head, if you push too hard you will prolong it/relapse more. If you rest too much you will become weak and depressed. You must find your own balance that works for you. Sometimes you have to learn to say no to things you can’t do. If you have to reduce work hours or take a long leave of absence, do it if at all possible and ask for help from family/friends. It’s hard because you may look perfectly well and be fine for a few hours and it’s difficult for people not close to you who don’t witness you on a daily basis “crash and burn” to know your unwell. So many including myself go undiagnosed for a long time because they appear normal. For me , I was 39 and looked 29 and nobody believed it until the bloodwork came back with elevated CK levels and positive igg/igm viruses. Viruses are widely understood, but are thought to be possible triggers to other illnesses later on, so priority must be taking care of yourself. It gets better, relapses get further apart, but it takes persistence.
19. experiment with foods , antioxidants, and herbs/spices known to help with inflammation and immunity. Raw honey, apple cider vinegar, cinnamon, teas, cumin, etc… There are lots of them. Read up, can’t hurt to try.
20. Take pain relievers if helpful. Different ones work for different people. Just don’t overdo NSAIDs (tears up stomach), (Tylenol hard on liver), (narcotic risks, use caution) hot baths/showers, whatever works for you.
Beat of luck. Please share any success you have had!
Nin said,
January 10, 2015 at 5:49 pm
Hi Sally,
I hope you’re doing well. I agree with so many of your 20 points! And a big yes to rest, avoiding stress and remembering that it’s not in your head – not many people can understand this kind of illness and it makes it even more difficult to cope.
I wanted to say a quick word for low-dose oral corticosteroids, as you haven’t tried them – they work wonders for me. They took a few months to help me with the initial infection, but now whenever I relapse they work quickly and effectively. I can be symptom-free within 2 to 3 weeks. Heavenly!
Wishing health to everyone reading…
Sheila said,
June 8, 2015 at 4:46 pm
I tested positive for the Parvo Virus back about 4 years ago and haven’t been the same since. The doctor thought the virus triggered fibromyalgia but the symptoms are so similar. Please tell me your thoughts. Could I have chronic Parvo?
Nin said,
June 28, 2015 at 5:13 pm
I think it’s possible. One of the many doctors I saw thought I might have fibromyalgia before I received the correct diagnosis of Parvo (thank you Dr. Bird in Sydney!). Mine flares up once every year or so. Prednisone helps me get the flare-ups under control quickly..
Susan said,
September 13, 2015 at 11:24 pm
Hello, I am sorry to hear that you are still suffering. I was diagnosed in 2014 and this summer I have been pretty miserable. I recently went to a neurologist and she has ordered blood work to test for possible autoimmune diseases. I mentioned chronic Parvo virus but she wasn’t too sure. I have read articles stating there is a link between parvo and these autoimmune diseases. Because the symptoms overlap I think a clear cut diagnosis will be tough. I know this doesn’t quite answer your question, but I hope it helps you to know that myself and many others are struggling to get clear answers on this. All I can say is keep reaching out to doctors to get the answers you need. :0)
Kathleen DelSignore said,
July 26, 2015 at 1:05 am
Hi Susan ,
Saw your post and wanted to first day I’m sorry you have this virus . Can’t lie , it’s a nightmare . You sound like me 10 years ago . All I can say is doctor’ s are far and few between who know about this and /or can help . This site is how I educated myself . Most people who are healthy , get exposed to this virus and it may not even affect them . Others , like myself and people on this site are the ones who seem to have Parvo attached to them in every way , shaoe, and form . Try to learn as much as you can here , so you don’t get disappointed , when you go to a dr , who tells you your symptoms are due to stress or just In your mind . Be strong , it’s s long road filled with twists and turns . Find strategies to help you continue to do things you love . Get a support team lined up and most of all ….. Listen to your body . Don’t overdo it, or you pay for it 20 fold ! You are Not alone . I felt alone until I found this site . We are all here to support each other !! Find what works for you and keep your smile !!!! Prayers to you
Susan said,
July 26, 2015 at 8:49 pm
Many thanks for the reply, I REALLY appreciate it. I thought I was one of only few out there with this virus. Sadly with more research I see thats not the case. I will continue to check back on the site and keep reading. :0)
PAM said,
August 4, 2015 at 12:36 am
TRADITIONAL MEDICINAL ORGANIC CHAMOMILE LAVENDER TEA HELPED NAUSEOUSNESS AFTER EATING. I CUT OFF STAPLE AND STRING TO BREW IN BOILED WATER FOR 15 MINUTES AND AFTER I DRINK TEA I OPEN BAG AND EAT HERBS. POLAND SPRING DISTILLED WATER HELPS GET RID OF EXTREME THIRST. IN BLENDER 1 1/2 CUPS DISTILLED WATER, 1 1/2 CUPS OF SMART JUICE CHERRY JUICE, BANANA,ORGANIC RASPBERRY 2TBS,1CUP WILD BLUEBERRY.3 GARLIC CLOVES, 1/4 OF ONION,6 FROZEN WHOLE CRANBERRIES, 6 APRICOT KERNELS, 2TBS CHIA SEED, ECT. THIS GIVES ENERGY
Leslie said,
September 13, 2015 at 9:53 pm
Hi All… Just wondering if anyone has had their parvo virus DNA monitored over the years. My DNA testing has been positive for four years now with varying copy levels. I’m still sick with miscellaneous and chronic health problems ever since contracting this virus in April, 2011. The doctors don’t really know if it’s active viral copies or “dead” viral particles. Everything I read says parvo DNA equals chronic infection. I’ve had two rounds of IVIG with no positive results. Thanks for any responses.
Shelly Doughty said,
February 20, 2016 at 10:36 am
I was diagnosed with a “tick fever ” then poly multiple arthritis.After a week in the hospital I finally got a diagnosis of Parvo B-19.
Excruciating pain in my joints. Like hundreds of bees attacking my knees and wrists.After weeks of prednisone. .. My doctor said I need counseling and it’s all in my head. …
Cold fronts and rainy weather makes the condition much worse.
Please share if you know what I am feeling.
This illness has completely messed up my life.
If anyone is suffering from this horrible virus, please post something.
Best wishes to all of you.
pam jean said,
April 24, 2016 at 1:46 pm
lots of bee polen,traditionl medicinal organic chamomile lavender tea
Cathy said,
April 30, 2016 at 11:35 pm
Since I found support from reading the personal stories on this blog, I’d like to share my story in hopes that it may help someone looking for ways to deal with recurring symptoms after their initial parvo B19 virus infection. In October 2014, I was diagnosed with parvo B19 virus infection (no lab work; diagnosed based on symptoms), and have since been coping with recurring symptoms. For over a year, I was seen by multiple rheumatologists, neurologist, and an infectious disease specialist, who were puzzled by the recurring symptoms because all of the tests they ordered came back normal (which among other things, included a positive result for past parvo, but negative for current parvo infection; normal brain and spine MRIs, no neuropathy, ruled out Lyme disease, lupus, RA, etc.).
Finally, in February 2016, I was tested for Antinuclear Antibody (ANA), which came back positive. In short, I was told that my parvo B19 infection is long gone, but my body’s immune system essentially forgot to turn itself off and continues to attack my body, as if the virus is still there. I was prescribed a muscle relaxer (cyclobenzaprine, 10 mg) and was told that there are other medications, such as cymbalta, which is an antidepressant but can also help with symptoms such as joint and muscle aches, which I still get along with headache, lightheadedness, tingling in my limbs, occasional rapid heartbeat and tiredness.
According to the rheumatologist who ordered the ANA test, there is no telling how long my symptoms may continue. Over-the-counter Ibuprofen does not help with my symptoms, and I’m refraining from medications with potential serious side effects, such as cymbalta. My current approach to coping with my symptoms is reducing my stress level (currently on leave from work), daily low-impact exercise, staying away from processed food, and maintaining a positive outlook on life in general. I still get flare-ups, but they are not as intense as my initial encounter with parvo. I’m just grateful that my symptoms are not getting worse and are somewhat manageable.
Mary Kay said,
June 8, 2016 at 11:39 pm
Has anyone been able to put the Parvo back in to dormancy with antiviral medications? I was diagnosed with Fibromyalgia and while in search of a cure discovered a DR Dantini in Florida who had Fibro. He treats people with antivirals (heavy doses) and has a 70% success.
Kristin said,
June 11, 2016 at 2:50 pm
I tried heavy dosages of acyclovir with NO success unfortunately…..7 years and counting with this horrible virus. Right now I’m trying 10000 mg of lyoosheric vitamin C. We will see how it goes. The part that brings me down the most is people lack of belief in really being very sick. Even my own family (thank God not my husband and children. They live with it so they know I’m sick) has issues thinking I’m making this up or something. All I can do is TRUST in Jesus and keep trying and loving everyone around me…. It is the hardest thing I’ve ever been through!!!
serenamuse said,
June 11, 2016 at 6:14 pm
I know it is rough. My extended family meant well but were always telling me about the latest vitamin supplement, or yoga class or to suck it up, push through it…they don’t understand because they have not been there. You just have to keep trying different things and one thing might work for a while then stop so you look for something else. I had a great chiropractor – very gentle – who really helped for a couple years. Clean vegan eating has been the greatest help, dark leafy greens! This year, going into a very stressful semester I started going to a therapist who specializes in chronic pain. He has been fantastic. Has helped me in practical ways to figure out what sorts of activities and movements, habits, at home, in the car and at work make my pain escalate, has also helped me to pin point stressors that increase my pain levels. He works with the St. Jude Hospital in Fullerton, dealing with a lot of different sorts of pain issues. I was not sure if he would relate to mine as it wasn’t caused by an injury or cancer etc. but it turns out in many ways, pain is pain. Best of luck!
Norma Gomez said,
October 2, 2016 at 11:38 pm
My husband has parvovirus b19 for 10 yrs and he recently had a flare up. The rash is all over his legs and has sinus mucus and cogh
Leslie said,
January 9, 2017 at 11:06 pm
Hi Judith- I too contracted Parvo a long time ago – 2011 – and still have the “debilitating” everything you have. The neuropathy is definitely the worst. Doctors of every color and stripe told me the parvo couldn’t have caused the neuropathy, until I brought in the few credible articles I could find that suggested a link and also had Parvo blood work that showed persistent DNA. I’ve been everywhere and seen every specialist – rheumatology, immunology, orthopedic, neurology – – and unfortunately, sadly there is nothing that can be done to heal the damage done by this virus. I even had a short course of IVIG, and nothing. I don’t say this to discourage anyone, but only to assure those seeking answers that nothing may be forthcoming despite diligent searching. It’s may save you the despair of no answers. I do wonder though what surgery you’ve had to help neuropathy? Was there an entrapment neuropathy? Mine is body wise so I doubt it would help, but most recently my arms from the shoulders to fingertips are horrendously painful – nerve pain. I wonder is after six years I’ve been hit again!
serenamuse said,
August 19, 2017 at 5:44 pm
If you find any help with the neuropathy please let us know. I get the restless leg, foot pain and weird cold patches on my shins. My mother has neuropathy, had to stop driving because she can no longer feel the ground or break pad, beneath her. They have never found the cause of hers, not diabetic. I was hoping to avoid it!
Kerry Humphreys said,
May 19, 2017 at 6:40 am
Hi I am very new to this virus.
I’ve been so tired for weeks and then came the joint pain I thought I had developed arthritis overnight. Joint pain in my knees the headaches the itchy feet. But I have always thought oh that’s athletes feet or that’s because I’ve been out on my bike or I’ve got headache because my necks hurting etc. Then my daughter came out in the rash yesterday and the pharmacy diagnosed her. I’m going to the Dr’s today about myself as a result of this as I’ve been like this for weeks now and didn’t realise they were all linked. I’ve come on here to see if there is anything I can do for the pain etc. There is a lot of info relating to kids but not a lot relating to adults.
I’m sure that plenty of you will read this and think yep we’ve all been there. Any help or advice ie how long am I contagoous for? I actually think my daughter has caught it from me not the other way round.
Thanks for your time reading my short blog and and all help and advice will be greatly received and is appreciated.
Sara said,
August 24, 2017 at 7:25 pm
Have you been tested for other pathogens? Parvo is often seen along with others like Lyme, West Nile, mycotoxins, EBV, Hanta, Zika, chikengunya (sp?, and a few others. I don’t think the CDC is up to date on the most recent studies and sadly research docs presenting their findings have been shamed/laughed off the floor during congressional testimony, but there are docs out there who specialize in Lyme and probably the viruses that seem to come with it. Google ILADS and you’ll find where you can be referred to a Lyme literate doctor. The treatment protocols vary widely, but Lyme and mycos are the only ones that respond to antibiotics as far as I know. It’s been found that going on/off and/or rotating the antibiotics works better than one long course. Many of these pathogens are grade b weaponized viruses (meant to disable and render one unproductive)-I forgot h5n1 and h1n1 are too. Sadly many can be purchased online for research with little restrictions/qualifications or background checking. West Nile was sold to Iraq in the 80’s. All this aside, a very kind ex-flight surgeon/navy seal and trauma physician counceled me at no cost on ways to help myself since there’s no real cure. He advised me to try to keep ahead of the curve. He advised low sugar, low/no dairy (difficult for me-I love milk), plant based, and absolutely NO gmo diet, take probiotic and fish oil. Get b and d vitamin levels checked-you may need supplementation. (Lots of organic smoothies help me). Lots of filtered water (must remove fluoride), rest/pacing. Sorry for this one but he also advised organic coffee enemas (be careful/read all info before trying at home, but they can be helpful for gut issues)You WILL get sicker and crash and burn if you don’t rest when you need it. As for the pain which I know is absolutely miserable, I had to resort to narcotic pain meds which allow me to have at least partial functionality and quality of life. Dependence is inevitable, but I’ve needed no increase in dosage for a few years and was able to cut in half after the first year of illness. If you recover, you just wean slowly-I came up with the idea of having meds compounded down so I could reduce slowly enough to avoid side effects. Docs have advised against too much/long term anti inflammatory/nsaids because of liver damage, rebound inflammation, and a host of othe issues, no immunosuppressants beyond what I had tried (methotrexate) because my immune system is too compromised and it may have masked symptoms while disrupting my immune system eventually making me
more ill. In a nutshell, he said to give my body what it needs to repair itself. He said it takes a long time, and I may not fully recover but if I’m very careful in taking care of myself,
life still feels worth living most days. Also was advised against trying IVIG due to risks. Be careful on the days you feel good to not go overboard-in my experience, I pay for it every time. There’s some info out there about colostrum being helpful, raw milk (I don’t know-I haven’t tried it, but there are some risks associated if not cautious). I also take a
liquod iodine supplement and something called DNA force (coq 10) both marketed by infowars. I think they help when I remember to use them. Lastly, proper western blot markers, specific PCR, agar and broth culturing, and sometimes blood/bone marrow tests for presence of pathogens need to be performed to know exactly what you’re dealing with. Disclaimer: This is my own experience, and I’m not giving medical advice except for rest and proper diet. Please consult with your own physician. Best wishes to everyone. I understand how difficult it is to get help when you appear healthy and young. Even many infectious diseases and rheumatologists don’t know much about these new and emerging nasties that wreak havoc on people. It even confounds family and friends when you’re okay one day and can get out of bed the next. Pray, talk to God, distract yourself with whatever relaxing activity (reading, videos, Netflix, etc…) when you have to rest in bed and don’t beat yourself up about it or feel guilty.
serenamuse said,
August 24, 2017 at 9:41 pm
Good advice. Thank you.
Nina said,
September 23, 2017 at 6:28 am
Hello everyone,
I just found this blog and I finally feel like I’m not alone. I was diagnosed with Parvo four months ago, right after having my third child. I have many of the symptoms mentioned here: joint pain, swelling, fatigue, electrical sensation in my legs and arms. At the beginning the doctor thought its related to my delivery. Once they diagnosed me with Parvo I had to stop breastfeeding. At this point I am trying to handle all the symptoms without medicine. I changed my nutrition to vegan, and in addition i stopped eating flour, sugar, tomatoes, eggplant, and potatoes. Sometimes I have better days but its always there. I also have three little kids to care for so I can’t find the time to rest throughout the day or night.
I was wondering if any of you know about people who completely recovered?? Since I have it four months, do I still have a chance to get it out of my body??
In addition, do you have any recommendation for a good doctor who understands Parvo in Los Angeles??
Thank you for your help!
Tina wilson said,
January 24, 2018 at 7:51 pm
Plz help this parva has taken my life from me. How long does it last.
serenamuse said,
January 25, 2018 at 2:26 am
That completely depends on your own situation. Could be three months, could be for life. Take care of yourself at the onset, and you might be one of the lucky ones.
Tina wilson said,
January 25, 2018 at 3:35 pm
I’ve ask to join the fb group but haven’t been accepted do u know if it still running. I’m at my wits end. I can only stand for 20 mins at a time. I need to work as I live on my own Ssp is rediculas.
I just need to know what to do. Any advise would be good. I’m 53 years old. And struggling.
Sara said,
January 27, 2018 at 4:48 pm
Hard to say, the longer you wait to get proper help, typically the harder the fight. Fortunately much better treatment is easier to find today than it was when I got sick in 2012. Skip the general infectious disease docs-you’ll do better with more specialized help. Parvo often has other viruses that tend to piggyback or come with it (i.e.-Lyme, west Nile, mycoplasmas, ebv, and several others that come with Lyme-mycotoxins, spirochetes and other nasty buggers). A top military doc/navy seal flight surgeon and other experts urged that staying ahead of the curve by taking care of yourself is priority. Immunity starts in the gut. Research this. I can recommend an expert in the field-Dr. Horowitz from Hyde Park NY. He or anyone that follows his work/studies under him (ILADS doctor) should be able to help you immensely. Taking good care of yourself when your exhausted/hurting is not easy-I order all kinds of organic superfood smoothies, and keep them frozen so they’re ready/at my disposal and I don’t waste a ton of fresh fruit (they’ll usually deliver and give you a discount for big orders). I just let them thaw halfway and stir or re blend them, and it is a LIFESAVER. Good luck to you.
serenamuse said,
January 25, 2018 at 7:50 pm
Go to a nutritionist. Eat only nutrient rich foods, no sugar, no empty calories, lots of dark leafy raw veggies. Rest, find things to reduce stress. There is not quick answer. Acupuncture or massage might help with symptoms.
Nigel Stitt said,
February 19, 2018 at 4:27 pm
Hi,
I have had similar symptoms to many of the contributors. Started 18 months ago. Significant pain in the hands, wrists, elbows, shoulders and knees. Flu-like symptoms. Lung issues – sometimes a difficulty catching breath, sometimes had to sleep upright.
Crash in lifestyle – work was difficult (now self employed from home), exercise was virtually impossible (historically was very fit), sleep was often difficult. Huge number of tests but the only one that came back positive was historical exposure to parvo (in common with many people).
After a lot of consultations with various medical professionals, an RA consultant suggested sero-negative RA (i.e. doesn’t test positive for RA) and put me on Methotrexate. It took about 6 weeks and there have been up’s and down’s since then (about 6 months) but an absolutely massive improvement. I know Metho is pretty heavy duty but it’s generally reasonably well tolerated (I’ve not had any significant side effects). To be honest, what ever the long term effects may, or may not, be this drug means that I can face life again.
serenamuse said,
March 15, 2019 at 10:10 pm
I’ll have to look up Methotrexate. I’m not familiar with that. I’d love to know how you are doing on it now.
Philip Ashfield said,
June 17, 2019 at 10:03 pm
Hi, my wife contracted parvo b19 in 2014, she had a bite to her neck in 2014, didn’t see what it was, caused her to have an ear infection, she felt like she had the flu, picked up after six weeks, seemed to recover but then began to feel unwell, tired, lethargic, she had loads of blood tests which eventually came back parvo b19. She felt so ill in 2015 she never went out all the year, lost a lot of weight, due to loss of appetite, and suffered anxiety. She also gets a rash, mostly on her legs and feet, it fades but never goes completely. She has pains and burning in her feet and joint pain in her right knee and wrists. When she asked for a blood test by her rheumatologist they told her it would only mean she has had the virus, even though she knows she still has it. Let’s hope they find some cure for it because it has ruined her life as it has for many others, all the best to you all.
Angel said,
June 18, 2019 at 12:33 am
Hi Philip-
Please look into having tests done for Lyme and co-infections immediately. You may receive resistance to this from Dr.s- continue on. If you are unable to get support, seek an LLMD as soon as possible. Lyme is a clinical diagnosis, and the testing is at best 40% accurate. If you are unaware of the controversies with Lyme- simple do a basic search. They will test for Bartonella, Borrelia strains, Babesia, Erlichia, MycoPlasma and more. The sooner she begins receiving treatment- the better chance of not being completely disabled. Please don’t wait on this- we are our own Dr.s- continue on until you find help. Please do not accept dismissal from any Dr. Many people do pass away from these infections. Many Blessings.