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.

 

753 Comments »

  1. bopdilly said,

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  2. Michele said,

    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,

      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,

        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,

        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,

        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

    • Lisa Uys said,

      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,

        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,

        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,

      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,

      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

  3. Tam Wedgwood said,

    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,

      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,

        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,

        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,

      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,

        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.

    • Aly said,

      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,

        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,

        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,

      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,

        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,

        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,

      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,

        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,

        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,

        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,

        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,

      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,

      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

  4. serenamuse said,

    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.

  5. Linda Jansen said,

    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,

      I just recently got Parvo, then a few weeks later multiple pulmonary emboli. My joints ache and I have severe fatigue.

    • Chris reichenbaum said,

      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

  6. serenamuse said,

    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,

      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,

        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,

        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,

        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,

        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.

  7. Melody Hampton said,

    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,

      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.

  8. Tracy Terralavoro said,

    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,

      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,

        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.

  9. Ken Rynning said,

    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,

      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

  10. colin robbins said,

    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,

      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,

        Nothing worse than a dr. thinking all is in your head. We know our bodies better than they do…

  11. Georgia M Boyce said,

    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,

      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,

      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!

  12. Molly said,

    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,

      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,

        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,

        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,

        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. : )

  13. amanda said,

    does anyone out the suffer from tight and heavy feeling arms and wrist from the parvo virus???

    • Tracy Terralavoro said,

      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,

      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,

        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,

        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,

        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.

  14. Tracy Terralavoro said,

    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!!

  15. Kathy said,

    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,

      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.

  16. Dean said,

    Does anyone come to this site anymore?

    • Tam Wedgwood said,

      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

  17. Tracy Terralavoro said,

    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….

  18. Nathalie said,

    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,

      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

  19. Nathalie said,

    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,

      did you start the treatment? any progress?

    • serenamuse said,

      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,

      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,

        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,

        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

  20. Lisa Y said,

    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!

  21. elaine henderson said,

    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.

  22. 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,

      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!

  23. Stephanie said,

    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,

      Can you further explain? I’m not sure what neuropathy is – but may have experienced it.

    • LIsa y said,

      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,

        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,

      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,

        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,

      http://www.ncbi.nlm.nih.gov/pubmed/19441978

    • Joe said,

      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.

  24. Charlotte said,

    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,

      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,

        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.

  25. Donna Yarema said,

    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,

      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

  26. Stephanie said,

    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,

      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.

  27. serenamuse said,

    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,

      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,

        Stephanie, I’m not familiar with ANA. Do you know where we can learn more about that? Is it something covered by most insurance?

  28. Stephanie said,

    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,

      Thanks! I’ll look it over. Perhaps it is something I should add to the resource page…

    • Lisa Y said,

      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,

        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.

  29. Charlotte said,

    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?

  30. Kristin said,

    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.

  31. Kristin said,

    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,

      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.

  32. Charlotte said,

    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,

      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,

        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,

        So glad that it is working! Let’s hope it continues and that your body can build up some reserves.

        Best, Serena

  33. Stephanie said,

    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,

      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,

        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.

  34. Stephanie said,

    Has anyone had the parvo virus rash reappear after feeling ill?

    • Charlotte said,

      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,

      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,

        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!!

  35. Stephanie said,

    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,

      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,

      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,

      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,

        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?

  36. Tam Wedgwood said,

    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.

  37. Stephanie said,

    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,

      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.

  38. Cindy said,

    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

  39. Stephanie said,

    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,

      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-

  40. Stephanie said,

    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,

      Thank you so much- I truly appreciate this….truly…

  41. Andrea Boundy said,

    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.

  42. diane said,

    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,

      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,

      Hey Diane-
      Similar story- What’s your update?

      • Cindy said,

        It’s Cindy, not Jeremy- sorry-trouble logging in…

  43. Andrea said,

    Does anyone get the tingling throughout the body? That symptom annoys the hell out of me.

    • 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!!!

  44. Stephanie said,

    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.

  45. Charlotte said,

    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

  46. Charlotte said,

    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,

      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,

        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

  47. Hello..
    I posted a # of posts and now I can’t find them on the site.. I hope they are not lost?????
    CatinMinnesota

  48. 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

  49. Charlotte said,

    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

  50. Stephanie said,

    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,

      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,

        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?

  51. Stephanie said,

    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!!

  52. Cathy said,

    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

  53. Tam Wedgwood said,

    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.

  54. Stephanie said,

    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,

      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,

        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!

  55. Cathy said,

    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,

      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,

        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,

      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. http://parvovirus.wordpress.com/about/#comment-549

      I presume you have had no luck getting through?

      Charlotte

  56. C. said,

    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?

  57. Cathy said,

    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,

      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,

        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

  58. C. said,

    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,

      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

  59. carol said,

    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,

      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

  60. Cathy Meyer said,

    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,

      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!!

  61. Cathy Meyer said,

    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

  62. Stephanie said,

    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.

  63. C. said,

    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

  64. Charlotte said,

    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.

  65. Cathy said,

    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,

      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.

  66. marisa said,

    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,

      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.

  67. Leann said,

    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?

  68. Cathy said,

    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

  69. C. said,

    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,

      “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

  70. Carrie Lutz said,

    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:)

  71. Cathy said,

    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,

      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

  72. Cathy said,

    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,

      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!

  73. Cathy said,

    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,

      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

  74. Cathy said,

    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,

      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,

      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. :(

  75. Gwen Dernis said,

    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,

      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!

  76. Cathy said,

    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,

      Cathy

      Good luck with your appointment today. Best of luck! :)

      Stephanie

  77. C. said,

    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:) ??

  78. Cathy said,

    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

  79. Cathy said,

    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,

      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,

      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

  80. Charlotte said,

    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?

  81. Cathy said,

    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,

      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,

        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

  82. Cathy said,

    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,

      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,

        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

  83. Charlotte said,

    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.

  84. C. said,

    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.

  85. Cathy said,

    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,

      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,

        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

  86. Cathy said,

    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.

  87. Charlotte said,

    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,

      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,

        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

  88. Cathy said,

    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!!

  89. stephanie said,

    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

  90. Cathy said,

    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

  91. Cathy said,

    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

  92. LeeLee said,

    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

  93. c. said,

    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:)

  94. Cathy said,

    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,

      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:)

  95. LeeLee said,

    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,

      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,

        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,

      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

  96. Linda said,

    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,

      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,

        Oh… I forgot (SURPRISE) the brain fog is bad for me.. it really is pretty scary actually!! Take care!!! Hugs… Cathy

      • Linda said,

        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,

      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,

        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

  97. Charlotte said,

    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

  98. Cathy said,

    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

  99. Linda Turner said,

    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,

      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,

      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

  100. Linda Turner said,

    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

  101. Linda Turner said,

    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,

      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

  102. Lisa said,

    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,

      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.

  103. Charlotte said,

    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,

      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?

  104. Sami said,

    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,

      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!

  105. Cathy said,

    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!

  106. Charlotte said,

    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?

  107. Diane said,

    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

  108. Christi said,

    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,

      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,

        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,

      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,

      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,

        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,

        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,

        Which journal/article?

      • Susan said,

        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,

      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!

  109. Kristin said,

    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!!

  110. Christi said,

    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.

  111. Leanne said,

    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,

      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,

      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

  112. Stephen said,

    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.

  113. Amy said,

    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.

  114. parvoless said,

    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.

  115. Cathy said,

    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!!!

  116. Alexandra said,

    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,

      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,

        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!

  117. Stephanie said,

    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.

  118. alexandra said,

    @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.

    • serenamuse said,

      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…

  119. Amy said,

    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,

      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,

        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,

        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,

      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,

      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.

  120. Charlotte said,

    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,

      Gosh… terriable…I wonder how common this is???
      Thanks Charlotte!
      Cathy

  121. alexandra said,

    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,

      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

  122. Seana said,

    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,

      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,

      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.

  123. alexandra said,

    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?

  124. Cathy said,

    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,

      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

  125. Charlotte said,

    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.

  126. Charlotte said,

    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,

      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?

  127. Alexandra said,

    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

  128. Alexandra said,

    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,

      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!!!

  129. Barbara A said,

    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,

      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

  130. Stephanie said,

    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!

  131. Barbara A said,

    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.

  132. Barbara A said,

    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?

  133. Katie said,

    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!

  134. Stephanie said,

    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

  135. Risa said,

    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,

      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,

      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,

        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.

  136. Cathy said,

    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,

      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!

  137. Ashley said,

    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,

      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,

      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

  138. Teresa said,

    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,

      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,

        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.

  139. Katie said,

    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

  140. Teresa said,

    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,

      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,

        Hi Cathy,

        I have sent an email to the nurse requesting my numbers.

      • Teresa said,

        OK.. got my labs.. IGG is 5.4 and IGM is 0.5

  141. Cathy said,

    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

  142. Teresa said,

    Do any of you have low Vit B and folic acid?

    • Charlotte said,

      Yes, I had low B12. I am on oral tablets now and have more energy.

      • Teresa said,

        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.

  143. Tam Wedgwood said,

    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.

  144. Cathy said,

    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,

      Cathy,

      He did write OLD on the Parvo. My EBV is also 8.

  145. Ali said,

    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,

      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,

      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,

      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,

      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

  146. Kelly said,

    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

  147. Tam Wedgwood said,

    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.

  148. Charlotte said,

    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,

      We are a MYSTERY DIAGNOSIS…

  149. Kelly said,

    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

  150. Barbara A said,

    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

  151. Charlotte said,

    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,

      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,

        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?

  152. Katie said,

    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!!

  153. Cathy said,

    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

  154. Risa said,

    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

  155. priya said,

    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

  156. Cathy said,

    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.

  157. Teresa said,

    How long did it take for a doctor to say you had CFS?

  158. Linda Turner said,

    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,

      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,

        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

  159. Katie said,

    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,

      Thanks Katie… you too! What a pain, literally!! I wish it was just more definative in the symptoms. Tough stuff…

      Thanks again!
      Linda

  160. Stephanie said,

    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,

      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

  161. Linda Turner said,

    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,

      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…

  162. Barbara A said,

    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)?

  163. Katie said,

    Responding to Teresa… Can you believe it took 13 years to hear the words. “CFS” from a doctor? Ayayay.

  164. Stephanie said,

    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,

      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…

  165. Chaundra said,

    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,

      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,

      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,

      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.

  166. Cynthia said,

    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!!!

  167. Cathy said,

    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

  168. Katie said,

    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,

      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!”

  169. Chaundra said,

    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!

  170. Angel said,

    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,

      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.

  171. zoraida lopez said,

    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,

      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.

  172. H said,

    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,

      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,

      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,

      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,

        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!

  173. Cheryl said,

    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,

      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,

        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,

        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,

        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!

  174. Jeepers said,

    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.

  175. Jeepers said,

    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,

      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!

  176. Jeepers said,

    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

  177. Katie said,

    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.

  178. Jeepers said,

    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.

  179. Jeepers said,

    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,

      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,

      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,

        Thx Serena. I’ve heard CYMbalta can be scary. Gonna try not o take it!

  180. Charlotte said,

    An inspiring story from a fellow sufferer.

    http://www.vcstar.com/news/2012/mar/12/no-headline—lim/

  181. Cathy said,

    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,

      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,

      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!

  182. AmyAzzy said,

    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.

  183. Luna said,

    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-

  184. Charlotte said,

    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… :)

  185. Luna said,

    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,

      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.

  186. Mary said,

    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,

      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!

  187. Mary said,

    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.

  188. Amy said,

    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???

  189. Bonnie said,

    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,

      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,

        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,

      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!

  190. mary thompson said,

    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?

  191. mary thompson said,

    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

  192. Cathy said,

    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!!!

  193. Mary said,

    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,

      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!

  194. Momma said,

    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,

      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.

  195. Charlotte said,

    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.

  196. Nichole said,

    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,

      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,

        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?

  197. Marla said,

    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,

      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.

  198. 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!!

  199. Bonnie said,

    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.

  200. Risa said,

    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

  201. Luna said,

    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…

  202. Luna said,

    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

  203. Luna said,

    Hmmm- I wrote a long part 2- Serena?

    • Luna said,

      Ahh- sorry- cookies ;) please delete!

  204. Jeepers said,

    Luna…I have so many questions for you. Can I privately email you?

  205. Luna said,

    Of course!!!!

    Lunaangel777@gmail.com
    ;)

  206. Bonnie said,

    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,

      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,

      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,

        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,

      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.

  207. mary thompson said,

    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,

      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?

  208. Jeepers said,

    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,

      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

  209. mary thompson said,

    Thx for the info! Please keep us posted

  210. Bonnie said,

    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,

      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,

        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.

  211. Cathy said,

    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

  212. Katie said,

    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!

  213. stef said,

    does anyone have a houston area dr that beleives in parvo and knows what it is??

  214. Charlotte said,

    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.

  215. Charlotte said,

    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. :(

  216. mary thompson said,

    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.

  217. Chaundra said,

    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.

  218. Cynthia said,

    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,

      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!

  219. 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,

      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.

    • 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>

  220. Cynthia said,

    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-

  221. Kristin said,

    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.

  222. Linda Turner said,

    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,

      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,

      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,

        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

  223. Kristin said,

    Yes I have hip pain especially at night. They can ache soooo bad it’s crazy…. God bless all of us:)

  224. Stefano said,

    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,

      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.

  225. mary thompson said,

    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,

      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..

  226. mary thompson said,

    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,

      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.

  227. Tam Wedgwood said,

    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,

      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,

        Thank you all.
        But is there anyone who knows how long will take to have this disease definetely cured?

  228. Tam Wedgwood said,

    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,

      I see. Thank you all again. You had supported me much more than all the doctors I have seen.. All the best!

      • serenamuse said,

        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

  229. Luna said,

    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,

      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~!

  230. D. said,

    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!

  231. Chaundra said,

    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.

  232. Charlotte said,

    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,

      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

  233. Chaundra said,

    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!

  234. Doug said,

    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,

      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?

  235. Linda said,

    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,

      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.

  236. Risa said,

    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,

      Oh I forgot about clay. Thank you for posting this!

  237. Chaundra said,

    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!

  238. Linda said,

    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

  239. Bonnie said,

    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,

      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…..

  240. Katie said,

    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!!

  241. Leslie said,

    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,

      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?

  242. Leslie said,

    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.

  243. Kristin said,

    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.

  244. Charlotte said,

    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,

      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,

        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.

  245. Barb Archambeault said,

    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,

      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,

        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,

        Montgomery AL

  246. D. said,

    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,

      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,

        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!

  247. Luna said,

    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….

  248. D. said,

    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.

  249. cathy said,

    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,

      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,

        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,

      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,

        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??!

  250. Linda said,

    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,

      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,

        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,

      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

  251. Charlotte said,

    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. :(

  252. Luna said,

    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)

  253. Barbara A said,

    your right this is the problem, but how can we change it? There has to be some validitated to our complaints.

    • Jenn said,

      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.

  254. Katie said,

    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,

      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,

        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,

      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.

  255. Risa said,

    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!

  256. Bonnie said,

    Hang in there! My life changed Feb 2011!

  257. Chaundra said,

    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!

  258. Jeepers said,

    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,

      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,

        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,

        hi…I tried emailing you and it came back as undeliverable. My email is jeepers06@hotmail.com

  259. Leslie said,

    Thanks for your post and update… it helps everyone to share/inform.
    The best to you…

  260. Lisa said,

    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,

      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,

        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,

        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,

        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,

      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,

        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.

  261. Tam Wedgwood said,

    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

  262. Barbara A said,

    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.

  263. Luna said,

    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….

  264. Lisa Uys said,

    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,

      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

  265. Chaundra said,

    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!

  266. Jeepers said,

    I know we talk about electrical sensations sometimes throughout our bodies. Does anyone get them in their head? Just curious

    • Charlotte said,

      Yes, especially as a side effect of the Elavil I take.

    • Jenn said,

      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,

      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.

  267. Lisa Uys said,

    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!!

  268. Jenn said,

    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,

      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,

      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???

  269. Kelly henson said,

    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,

      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.

  270. Tam Wedgwood said,

    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.

  271. Jeepers said,

    Leslie- Id love to chat. What is your email?

  272. Jenn said,

    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.

  273. Linda said,

    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

  274. Chaundra said,

    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.

  275. Jenn said,

    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,

      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!

  276. parvoless said,

    I really think Olive leaf (liquid- in refrigerated section of health food store) helped me.

  277. Stacey Turner said,

    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,

      I wish you all the best. Do let us know how your experience with the naturopath goes.

    • Luna said,

      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…

    • 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

  278. Lisa Uys said,

    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,

      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,

        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 :)

  279. Jenn said,

    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.

  280. Luna said,

    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,

      I would add pain in joints in hand
      for me I would say 1A

    • Leslie said,

      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,

      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,

      Hi. 2AB, 4AB, 6C (livedo reticularis type rash on back of hands, arms, legs and feet; worse in the cold).

  281. Chaundra said,

    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!

  282. Jenn said,

    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.

  283. Luna said,

    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!!!

  284. Barb Archambeault said,

    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,

      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:)

  285. Katie said,

    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!!!

  286. Linda said,

    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

  287. Chaundra said,

    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.

  288. Linda said,

    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.

  289. Luna said,

    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

  290. Linda said,

    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

  291. stacey said,

    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,

      I have not seen any new posts in a few days is there a problem with the website?

  292. Jenn said,

    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,

      Honestly, I have no idea. I’ll go into settings and see if there is anything I can do…

      • Lisa R said,

        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.

        About Mary Shomon | Thyroid Forum | Twitter | Facebook
        Photo: clipart.com
        Comments (21)See All Posts Share
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        Comments
        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.

        Leave a Comment
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      • Jenn said,

        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

  293. Leslie said,

    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

  294. Mandy said,

    Ozone therapy and a rife machine will get you results.

  295. benefits said,

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  296. Jenn said,

    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,

      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:)

  297. Heidi said,

    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,

      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,

        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.

  298. Mary said,

    Hang in there, your not alone. Get meds for the depression. That will help.

  299. 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

  300. Gia said,

    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!!!

  301. Cynthia said,

    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,

      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

  302. Barb said,

    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,

      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,

        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,

      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,

        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.

  303. Barb said,

    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,

      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,

      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,

        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.

  304. Barb said,

    Vicky, I had a gastric bypass and very limited in what I can take & it can cause serious results thank you for replying.

  305. Barb said,

    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,

      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,

        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

  306. Vicky said,

    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

  307. Barb said,

    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,

      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?

  308. Tam Wedgwood said,

    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!

    • 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,

        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,

      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,

        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,

        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.

  309. abbey balmucki said,

    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,

      I sure hope it helps!

  310. 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
    me from that service? Cheers!

    • serenamuse said,

      I’ll try, but I think that is something you have to do on your end of things…

  311. Mark said,

    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 !

  312. Charlotte said,

    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.

    • 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,

        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,

      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

  313. tina said,

    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,

      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.

  314. Ray Odell said,

    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

  315. tina said,

    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,

      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.

  316. Mark said,

    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,

      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.

  317. Chaundra said,

    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.

  318. stef said,

    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.

  319. William said,