My Story
As October wanes I find myself drawn to my bed like a magnet. There are days when I hardly feel human, more like my cat who accompanies me there. This condition of mine was caused by a “harmless” little virus called the Parvo B 19. My daughter brought it home from nursery school six years ago. Unfortunately I was one of the lucky few adults to contract the full force of the virus resulting in permanent damage to my entire system. For some reason the virus likes to recharge at the change of seasons, though this fall is particularly worse than last.
I am a 39 year old artist, mother of two and wife. The purpose of this blog Is to provide a forum for chronic parvo sufferers – to educate one another on what has worked for you, what has not, how to find doctors that are knowledgeable, to share links to research on the web.
I am a member of the mirandamission blog, but have found that it was more of a site where everyone went on and on about their symptoms and never accomplished anything – as far as finding help. I am seeking results. I am tired of commiserating all the time. That does not mean we can’t be a support to one another, but I really want this to be an educational site. Let us help each other in our quest for relief from the symptoms of parvo.
Initially I began with a rash on the backs of my hands. The next day my joints were swollen and painful. The swelling and joint issues spread to my knees and other joints. I was tested for everything under the sun, finally they narrowed it down to one thing, the Parvo B19 virus. My story is usual, it did not clear up in a few weeks, or months. I did have a remission of about a year after the first year, then after a very stressful move the rash returned – on my face and neck this time, the arthralgias, fatigue, muscle aches and brain deadness, followed. I’ve been dealing with various levels of the virus for six years.
What medications have helped you? I found cymbalta 60mg to be very good and reliveing the arthragias and brain fog, for about a year, but then started to wear off. I am currently cutting back on that – half dose, in hope of trying something else.
The only Doctor I have found who really understands Parvo is an infectious disease specialist. Unfortunately we moved and now I am searching all over again. I currently have referrals out to Loma Linda Medical Center and UCLA. The only thing I have found mentioned in the research on line – as far as a near cure is the IVIG treatments. That is my goal. To find someone who can offer this to me.
Have any of you had IVIG? What were the results?
Okay, this is the start. I hope this can be a productive site for all of us who suffer from this lousy disease.
Living with Chronic Parvo B19 Virus 
Sherrie Pilkington said,
July 16, 2009 at 2:34 am
I loved to see your photo in bed – everyone who knows me knows that I love my naps. They just don’t understand that I don’t love naps, I NEED naps to live. It’s my first time finding your site after years of struggling with Lupus from Parvo. I’ll revisit the site and read your blogs when I have more time. What brought me here was that the Lupus drugs aren’t working anymore so I wondered, could it be the Parvo…Diagnosed with Parvo at 19, then with Lupus at 22, now 36. Plaquenil has been a savior but not quite cutting it lately, the overwhelming fatigue, not tiredness, but exhaustion is what’s so troubling now. And the joint pain. Ok will check back in a few days to read up. Thank you for posting this blog and the information.
serenamuse said,
July 16, 2009 at 2:56 am
Hi Sherrie,
I’m not an expert on Lupus – though know they tested me for that. Doesn’t it turn your fingers and toes white? I have to say your current symptoms sound like the Parvo. I have found recent help with changing my diet – lots of info on that in my posts and a good book – Eat to Live – on the resource page. Others have written in about B- vitamins, diet and water therapy. I am really interested in the water therapy…
Do check back with us. I hope you find some help.
Serena
Marz said,
May 30, 2013 at 3:53 pm
I have B19 RA, Fibromyalgia I can go on and on, I get stung by bees 3xs a week, drink structured water with apple vinegar and honey, use bee pollen (NO FAGTIGUE ANYMORE in a month) and royal jelly, propellis…I can walk without my walker or cane, I can have my life coming back slowly after a month! Look in your local areas for a person would knows bee venom benefits…the actually bee not in a bottle works!!!
chris Reichenbaum said,
June 6, 2016 at 10:19 pm
Hi Serena,
I had Parvo B19 approximately 5 years ago and believe I’m totally system free.
Long before I had symptoms of Parvo I was diagnosed with Raynaud’s Syndrome.
Symptom’s are typically when your body temperature goes down (you’re cold) your fingers turn white and your hands are red.
Sometimes the bottoms of my feet turn blue from lack of circulation.
I do not know if there is any correlation between the two auto immune diseases but it’s curious that you’re describing Raynaud’s Syndrome. Google it.. by the way, that’s how I diagnosed the symptoms of the Parvo Virus! My Dr. was dumb founded..she couldn’t believe that she missed it and I just kept feeding all my symptoms to Google and bingo, Parvo B 19 came up. we tested my blood and that’s exactly what I had..
You can live with Raynaud’s investigate the symptoms and disease and let me know??
Good Luck anyway!
Chris R.
jim said,
June 9, 2012 at 6:11 am
From the begining I couldnt understand what was going on with me. The pain was unlike anything Ive ever experienced before I could not even move even slightly without screaming out loud like a mad man the skin on my legs just below my groin to the calve mussles felt as though it was being ripped off and my arms from the shoulders felt like a Bear had chewed on them and left them dangling from the joints or that someone had slammed them in the car door
Tara Applegate said,
August 28, 2013 at 11:48 pm
Where did you go to get treatment. I need help
Tara
shannon said,
November 21, 2012 at 8:08 pm
I was diagnosed as being positive for parvo virus in September of 2012. It’s now the day before Thanksgiving and I still have symptoms. Right now the worst part is I had a short period, but also lots and lots of lower back pain, gas, bloating, and constipation. I also am anemic, tired, and itchy randomly on the soles of my feet, head, arms, hands. When I started feeling bad I found out I had Strep B, a bladder infection, parvo virus, and was anemic all at the same time. Strep B is the bad one. Also had a rash all over my body (was sent home from work due to not wanting to get anyone sick-I am a cook) Also extreme hand, wrist, feet, leg swelling and pain which sent me to the er, There’s lots more to go with that story but I was really wondering if anyone has the lower back pain?
Michelle Crosby said,
June 4, 2013 at 12:11 pm
Yes,I too have lower pain issues. I have had double knee surgery and a cervical spine fusion. I am a mess, and just recently a blood test came back 100% unequivocal for Parvovirus. That was about a year ago, but I have had joint problems for about 10 years. Could I possibly have had this virus that long? And will these symptoms persist through out my life????
Shannon said,
October 8, 2013 at 8:45 pm
Update- October 8, 2013- I posted a year ago. I still have symptoms of parvo. Today my feet are itchy as well as my hands. It’s all random. I have noticed that alcohol makes my symptoms come on immediately no matter if I even have 1 drink. I struggle with vitamin B12 deficiency as well as iron uptake (I struggle with anemia a lot as a result of this). Also my hands fall asleep when I sleep,mostly the right one but both last night. Today I am experiencing stomach pain. Additionally when I was first diagnosed as being positive for parvo the lymph node in my right armpit hurt. This symptom appears and disappears randomly at will. I also have gotten sick over the course of the last year many times and I get it worse than the people around me ever did. I fear parvo will go on for years. I just want it to go away.
Melissa said,
May 1, 2014 at 9:36 am
I had such bad back pain from mine that I went to a surgeon to find out I had four herniated discs. I had no idea it was related, but it was. I had two spinal surgeries!!!! I had the the first one December of 2012 and it failed, leaving me in bed for months. I had a spinal fusion July 2013 which helped, as my spine needed stability. It turns out it was all from
Parvo, as I had fluid in every spinal
Joint from this nasty virus!
Vineeta said,
May 25, 2015 at 10:21 am
Yes!! Back Pain too! Shannon this was a while back. My mom is having all these symptoms you mentioned. What is happening with you now? thanks
Jennifer Stuart said,
May 26, 2015 at 10:31 pm
That is kidney pain most likely. Go back to your urologist. Did you take care of your uti?
Paula said,
January 4, 2016 at 5:58 am
That’s when I got it. I hurt worse every day
Tania Caputo said,
May 22, 2018 at 10:34 am
Hello,
The lower back pain you mentioned – did it end up being kidney related and the inflammation then out of control due to the virus?
Also, you said about the itchy soles of your feet …me too!
Have you recovered from all or any of it?
Thanks
Tania
alfie said,
September 28, 2013 at 7:45 pm
Hi
Amazing. Six years after having a diagnosis for parvo and I come across this sight. I have had pretty much exactly the same story as you. I was recently told by my doctor that I might have created the symptoms myself through depression. Im not depressed I fortunately have a very positive out look on life and a very supportive husband which has kept me in tact. I have had new symtoms which include blurred vision and pins and needles all over, I am hoping to have an mri to see if I have ms, All my symptoms began when I picked up parvo b 19 and I have never been the same since. I do have good periods and work hard to keep on top of it all. Sun shine is good, vitamin d, decaf tea and vitamin c helps me absorb the other nutriens more. Resting for an hour mid day when I need to, and yoga when I can helps. Thank you for this site, I am so frustrated that I cant locate a doctor who can help.
katiegilk said,
September 29, 2015 at 9:04 pm
Hi! Did you ever get the MRI done? Just wondering because I’ve been thinking of having one myself! Parvo has caused pins and needles for about 6 months now! It’s driving me nuts.
Shelly Doughty said,
December 28, 2015 at 6:44 pm
My Dr. believe s it is in my head. Well she isn’t my Dr anymore. I have had symptoms for a year and a half. I finally found a Dr that would listen to me. I started taking Cymbalta and it has really helped. The cold weather and the barometric pressure over 30 causes me a great deal of pain. I also have struggled with the bees. This virus is horrible.
Wendy said,
June 22, 2016 at 1:27 pm
I have similar symptoms and my PCP also thought it was depression but I tested positive for mono. Now nearly two months with mono, I still have the joint pain, inflamed lymph nodes and lower back pain on the right side. I’m usually a healthy, happy 46 year old female but tend to get strep easily and now mono twice. My IGG levels were low. Hoping to see an immunologist for further testing.
Amy Jervis-Gober said,
March 15, 2014 at 10:13 pm
Holy Crap! I thought I was the only one. A doctor in Mississippi diagnosed me believe or not. Nobody else has heard of it. I’m back home in Richmond Va. And have been dealing with symptoms for almost five years. I take Wellbutrin xl helps with brain fog and energy. My brain fog is not nearly as bad as it was initially. I’m a writer so that was a blow. I’m contacting an infectious disease doc at VCU next week. I think their main focus is HIV, but here’s hoping. Most docs just look at me like I’m a whiny white girl, and yes that is true, that’s beside the point. I feel like hell. Somebody’s got to know something, Dagnabbit!
julia roddy said,
March 17, 2014 at 3:37 pm
Hi I have had ongoing symptoms from parvo since two thousand eight. It does feel as if Im improving until I get hit with another virus. A flu can bring me right back. I also have odd symtoms like pins and needles every where and I lose focus in my left eye. It’s been hard because my doctor hasn’t been very supportive, and Im at a loss because I work full time and I have four children. Sometimes I get home and my ten year old makes sandwiches for tea. Darnaship Julia
serenamuse said,
March 17, 2014 at 4:11 pm
Julia,
It is very rough. At times it seems that you will never know your body again, as there is always something new happening. I was just in a car accident, had x rays taken of my neck and spine. I was told I have an unusual amount of wear and tear for a person of my age. Is it the parvo? Who knows. Yes, families have to step up. It has taken it’s toll on mind for sure. At some point therapy might be a good idea. Children are not as resilient as we think and this can really play into their fears as well. I don’t have any answers. I’m sorry. I hope you improve soon. Just keep trying everything you can, diet changes, yoga, rest…
sympathetically yours,
Serena
julia roddy said,
March 17, 2014 at 4:52 pm
Thanks Serena Yes therapy has been great, at least the therapist listens sympathetically, I write too and have just completed my first novel, that has been a therapy in it’s own way. I tried yoga but the downward dogs irritates my neck, so two years ago I took up Karate, sometimes Im exhausted going in but I make myself do it because I nearly always feel better after. I think it goes without saying that the diet plays a significant role, and I drink wine occasionally but not often, I find less gluten, and paradox a blend of oils and vitamins very helpful. I’m just amazed at the amount of people on this blog who have had a similar experience, yet doctors still insist it’s a once of illness that one should apparently recover from in a few weeks. Wishing you a full recovery. Julia
Joan said,
October 15, 2014 at 11:49 am
I would see a good naturopathic physician. I have naturally treated lymphoma, and infected tick dieases of Lyme, mold illness, EBV and CMV viruses, etc. U need 2 get 2 the root of ur problem. There is a good N.D. in Md.
mary anm said,
May 11, 2015 at 11:05 pm
I live south of richmond just diagnosed and all i can say is severe joint pain, skin pain, exhauastion, and brain fog. Doctor is of no help saw a reumatologist she says oa but not much else
What doc are you seeing?
Vineeta said,
May 25, 2015 at 10:24 am
Hi Amy,
What is going on now? Anyone found anything else? I am in the same boat with my mom. Have taken her to sooooo many doctors and no one is able to help her.
Leticia said,
February 26, 2016 at 4:07 am
I just cried reading all this… I been leaving with all this symptoms plus chronic migraines… Was told diagnose with Parvovirus b19 @ 32 after 2 months of nearly been crippled but having to be strong to take care of my new lborn, now I’m 39 years old and all the symptoms still here, was recently diagnosed with raynauds Syndrome, arthritis, and swelled lymph nodes in my right Breast, I was most recently told that I could have lupus… But never crossed my mind that it could still b this nasty virus! I hope I can find the right doctor this week, to put this puzzle together, thank u so much for this great opportunity for ppl like me still see a light at the end of the tunnel!
Mary Grosso said,
May 8, 2015 at 2:02 am
Hello all need to be tested for Hemochromatosis because all these diseases are associated with it it is an Iron storage disease and is inherited test the Serum Ferratin , the transferrin and the TIBC Iron in the blood or do the DNA test Parvovirus toxoplasmosis (a parasite T.Gondii) test by DNA/PCR IgG and Igm may not be conclusive it too can come from tick like Lyme disease with a weakened immune system you could have many things going on also toxo and or Hemochromatosis could be effecting you pancreas giving rise to diabetes your brain could be effected by toxoplasmosis need MRI and correct expert to look at MRI’s toxo can be reactivated by steriods and other meds can be passed from mother to child cause blindness hearing loss mental problem trouble walking cysts it likes the brain the muscles lungs heart check for all of these rash associated with also possible Parvovirus B19
Mary Grosso said,
May 21, 2015 at 11:28 pm
Have you been tested for Toxoplasmosis make sure do a PCR test plus a IgG and Igm insist they say they have tested you for everything but have they check it out on internet and CDC site also be tested for Hemochromatosis too much iron in still have it your body you could even be anemic and still have it check the serum ferritin transferrin and TIBC
Quin Abrecht said,
July 16, 2015 at 11:51 pm
I was just mailed my bloodwork which said I had this virus. For years – about 10 – I’ve been suffering red cheeks, fevers, joint pain, some days needing to sleep hours even entire days at the worst. I don’t know what to do I feel like I’ve found people who get it.
Donnamarie Pierotti said,
July 21, 2017 at 10:19 pm
Thank you so much for sharing. I was diagnosed with Parvo 12 years ago and continue to test positive for it. I got it when I was bitten by a lyme tick in NJ 23 years ago and I have a myriad of other co-infections along with the lyme and parvo. I know many people think I’m lazy, with the exception of my husband. I sleep many hours of the day and can only do very few things, if any, per day. I’m 55 and experience overwhelming pain. Been trying a chiropractor and lymphatic massage. Too soon to tell but have taken so many meds and so far nothing has helped. I am trying to detox my body to see if that helps. Any suggestions appreciated. Thank you so much.
serenamuse said,
July 24, 2017 at 12:32 am
Good luck with the detox. The first week is tough going off the meds, felt like I had the worst flu and nightmares. But it got better and better. I have found that keeping your body as “clean” as possible and giving it nutrient rich foods at least gives it the best chance of fighting back. Let us know how it goes.
Billie Hensiek said,
July 18, 2009 at 4:53 am
Hi all.
This is my story. About 2 years ago, I almost lost my husband to a very mysterious disease. He couldn’t hardly move, was running fevers, achy, etc. It took 3 trips to the emergency room and finally on the third trip, my yelling at the doctor telling them that my husband was dying in front of me, peeing out tea colored urine, not able to walk or move, and that I was physically unable to take care of him by myself in that condition. (He was 6’2 and 250lbs, and I was 5’7 150lbs, he was dead weight, there’s no way.) They finally admitted him, a few threats about a malpractice lawsuit later. Anyway, he was in the hospital about a week, and their final diagnosis….They THOUGHT, but weren’t completely sure, that he had Parvo. They gave him antibiotics intravenously and he got better very slowly over the next 2 months, that’s when my problems hit. I was very active. I was walking 5 miles per day, everyday. I was in excellent health. One day, my family and I were walking down the trail that I normally walked on, and we got half-way down it when I felt like I had been run over by a MAC truck. I felt like I hadn’t slept in 100 years, and even though I walked that trail everyday, I was the one holding THEM up. (They walked it every now and then with me, but not everyday.) I had to keep stopping to rest at the mile markers, and once we made it back to the car finally, I couldn’t make it up the hill to the car so my husband had to drive the car down to me. As soon as I got into the car, I fell asleep and slept the entire way home. (About 1/2 hour.) After that day, I started gaining weight rapidly, I started having thyroid problems and hot flashes and eventually had to have my thyroid removed. I started having swelling in my feet that we couldn’t figure out what was causing it, and my hands and fingers started swelling. I started having trouble walking, severe trouble and it felt as though my body was rapidly moving downhill. I couldn’t stand on my feet or walk around longer than about an hour. If I did, then the next day was spent in severe pain in bed. I started having language problems, speech problems, memory problems (I couldn’t remember my address at one point (we’ve lived here at this same address for 2 years), got lost coming out of McDonald’s bathroom in my hometown at another point, couldn’t remember my husband’s cell phone number, ect.) I started transposing the wrong words for what I was trying to say, and the wrong letters for what I was trying to write or type. I started thinking something was very, very wrong. It felt as though someone was taking an erasure to my mind and erasing bits and pieces of my thought process. On one occassion, I couldn’t remember how to multiply by 8’s or 9’s and on another, I couldn’t remember how to add decimals. It was horrible. I remember one day I couldn’t remember how to fold underwear?? How can you forget how to fold underwear?? I went to doctor after doctor. Most of them diagnosed me with severe depression. Well what a shock, of course I’m depressed, I’m sick and no one seems to have any other answer other than depression?? Finally, they diagnosed me with rheumatoid arthritis. By that time, I had developed a severe rash on my left arm. The itching was so severe that it would keep me up at night and on many occassions, I was half-tempted to put lighter fluid on it to burn the skin off just to make the itching stop it was that bad. They started me on Aleve. It didn’t help, moved me up to hydroxychloride (can’t remember how to spell it), then methotraxate, and finally cyclophosomide. Cyclophosomide is a dangerous drug. It is normally used for patients undergoing Leukemia treatments, but apparently, my rheumatoid is so far out of control that it warrants highly dangerous drugs to combat it. I didn’t realize how bad it was until later on. I was also put on Prednisone. Those two together helped me to walk again, but then there’s the issue of being sick ALL of the time. Since cyclophosomide is a chemotherapy drug, I had chemotherapy side effects and reactions to the drug in addition to my disease. I was tired all of the time, and constantly sick. At one point, I got a recurring sinus infection that lasted for 4 weeks. They would put me on antibiotics and it would go away while I was on them, but as soon as they ended, the sinus infection would return. I started researching my disease and the medications the doctors were using to treat it. I keep telling my doctors that I think my disease has something to do with my husband getting sick two years ago because as he was recovering and just starting to get his life back, that’s when I started going downhill FAST. My left arm rash has now moved onto my right arm, so now both arms itch horribly. The only way for me to relieve the itching is by putting ice cubes on my arms and running them up and down both arms quickly over and over again until the flare subsides. I then put Sarna medicated itching cream on them. It doesn’t last long. In addition to all those symptoms, I’ve started seeing an allergist who claims that I am severely allergic to mold, dogs, cats, and pretty much everything else under the sun, so I have to have 3 allergy shots 2 in my left arm and 1 in my right arm twice a week. I also have to be on nebulizer treatments 3x/day every day for severe asthma called allergy induced asthma, caused once again by my so-called rheumatoid arthritis (YEAH ME!!). None of these treatments appear to be helping me much. My rheumatologist thinks I need to be tested for early onset Alzheimer’s (I’m sure I’m spelling that wrong.) I am only 36. I feel 50-60 most of the time. I feel run-down, tired, achy, have severe memory problems, trouble sleeping at night due to the horrible rash, headaches that come out of no where, feeling so exhausted at times that I’m ready to pass out and having that just come out of nowhere, and most of the time I can’t walk. I weigh more than I ever have in my entire life and gained all the weight about 60lbs in 6months time. I spoke to my primary care doctor today. I told her that I feel like there’s more going on with me than just rheumatoid. I told her how strange it was that I was fine one day, and completely disabled the next. I told her how miserable I am and that this isn’t quality of life and that if I were a dog, my owner would have probably already had me put down. I am not suicidal, but I am really sad and frustrated that no one has helped me. They said that they tested me for Parvo and the test came back negative, but I really wonder if they did, or if they just told me they did. They gave the same excuse that I’ve seen some of the doctors on the internet give. It only happens to kids. My husband wasn’t a kid when he got it. He was 36, the age I am now. I’m going to show this website to my doctor and contact an infectious disease doctor to see if there are other options out there. If it is Parvo, then that’s o.k. with me, because right now, I’m fighting a ghost. My disease is invisible to everyone and every medical test that I’ve endured right now, and if it’s Parvo, at least I’d know what it is, so I could know what to expect in the future and be better prepared. Right now, I have no future because I don’t know from one day to the next what to expect and what’s coming next. All of my hopes and dreams have been taken from me. My dream of becoming a Psychologist and helping lots of people, my dream of finishing my college degree, my dream of becoming financially secure and having a house by the lake. My dream of playing with my children and being a good mom to them. All gone. I took my daughter shopping today. Most of it was spent in one of those electric wheelchair carts. Fun for her, not much fun for me. I dread going anywhere anymore. It hurts too much both physically and emotionally. Does this sound like Parvo symptoms to you or something else? I hope it doesn’t sound like I’m feeling sorry for myself. I’m not, and I don’t. I just wish I had some answers so I could stop feeling like I’m going crazy. I know this isn’t me. This isn’t the me I used to know. The one who used to be thin, pretty, and healthy. This isn’t the one who used to go to one of the best colleges in the country, or the one who used to be able to run a business by herself. This is someone else, someone that I don’t want to be.
serenamuse said,
July 18, 2009 at 6:12 am
Hi Billie,
Thanks for sharing your story. Wow, you have been through it all. First off, my father died from Alzheimers and your memory loss is not the same sort of memory loss associated with Alzheimers. With, A, they say you don’t forget where the keys are but what they are used for. Your experience sounds very much like many of ours. This past fall I could not make sense of the words on the pages of the book I had been reading. I could read the individual words but my brain was too tired to put them together. I could no longer drive. Working at the computer made me motion sick. I could not remember dates, birthdays, addresses. People would ask me a question and I’d look at my husband for the answer. There is a book on the resource page that is really good for helping others understand what you are going through, and also for you to connect to someone else who has had a similar experience. This woman’s was with Mono – but it is amazing how similar some of they symptoms are to the chronic Parvo symptoms. The book is Encounters with the Invisible.
Have you been tested for a recent Parvo infection? I would ask for that. I too had the weight gain and as long as I was on the drugs, could not get rid of it. As soon as I weened off of the medications I started losing weight. For me a drastic diet for detox – more about that in my other posts – is the only thing in seven years that has helped me – substantially that is. I have tried vitamins and supplements, dark chocolate (really there was a study on that), magnets, Xango juice. Hey I have been desperate. I will say most of these things helped a little. The magnets really helped for about a year – sleeping on the Nikon mattress – I think that is what it was called. They are from Japan. Anyhow, we are all here to share our experience and try to pass on what is working for us or for resources we have found.
How long did it take for your husband to improve? How long have you had it now? Do hang in there. I understand about just wanting to be able to give it a name – to be able to say “I have this”. Instead of not knowing and people thinking it is all in your head or something. We have all been there. It is so hard on the self esteem. You start to wonder if there is something you could be doing to change this, is it somehow your fault. No, it is a virus and you know what, I do not take viruses lightly any more.
Do keep in touch and let us know how things go with your doctors. Have you tried an infectious disease specialist? The only doctor I’ve seen who understood the magnitude of what Parvo can do was an infectious disease specialist – I had to self refer. I phoned all over the area asking for someone who treated Parvo and that is how I came upon this guy. Sadly did not have much to offer other than drugs which eventually stopped working, but he did validate what I was experiencing and had a woman in the same day right before me with the same issues – also Parvo. It felt wonderful just to have someone say yes, Parvo virus goes though your entire system and changes everything. I needed to hear that.
Take care,
Serena
Rebecca said,
August 11, 2011 at 9:43 pm
Serena,
My kids brought home the roseola virus and then soon after i got the fever,sweats and chills, headaches, and rash. Every adult who is LUCKY enough to contract the virus…will it be chronic like yours or is there a chance of a passing virus like the kids?
serenamuse said,
August 12, 2011 at 4:09 am
Oh not every adult who gets parvo ends up with a chronic condition, only a small percentage. So chances are that it will run it’s course and you will be fine! Crossing my fingers 🙂
Jennifer Stuart said,
May 26, 2015 at 10:50 pm
This sounds familiar. I have lupus. I also had two Tia’s mini strokes. Have they checked you for lupus?
Jennifer said,
May 20, 2010 at 9:15 pm
Oh my gosh…has anyone on here ever been tested for tick born illness? I was diagnosed with Rocky Mountain Spotted fever and suffered for months with all the symptoms listed on different blogs. It was horrible. I spent months on antibiotics. Not sure if I have Lyme Disease going next month to get tested. Lymes can cauuse MS,ALS, Alziemer’s, twitching, feeling of overwhelming tiredness, arthritis, to name a few. Please if you have these issues and test negative for PArvo get tested. It probably saved my life. I am now on vitamins and supplemnets and feel 90% better. Co Q 10 and B complex have been miracle drug. Also, my thyroid went bad and started on an active thyroid hormone called Cytomel. Seems to be helping alot. Just wanted to put this out there. May God heal all of you and bring you back to good health.
I thank him everyday for mine.
Jennifer
serenamuse said,
May 21, 2010 at 7:04 pm
I contracted the Parvo in England and at the time was tested for Lymes and any other possibilities. I imagine each region will have it’s own diseases and you will have to do your research. Have you been tested positive for Parvo though?
Helen said,
October 10, 2011 at 10:37 pm
Hi I wonder have you been tested for hashimoto encephalothpy?
serenamuse said,
October 10, 2011 at 11:38 pm
From what I have read about it, it does not seem to fit the Parvo profile. Also, it mentions thyroid and that is always fine on my tests.
Ashley said,
June 26, 2012 at 9:52 pm
It kind of sounds like you have lyme disease. Especially with the fact that you go hiking on the trails. Very easy to pick up ticks. If you’ve ever had a tick on you, you most likely are infected with lyme and/or the co-infections that go along with it. I suffered for a very long time like you because I couldn’t find out what was wrong with me.
serenamuse said,
June 26, 2012 at 11:51 pm
Most people who are eventually diagnosed with Parvo will have been tested for Lyme early on. I know I was…
Kathy said,
November 13, 2012 at 11:02 pm
Billie,
I would like to thankyou for sharing your story. Your dream of helping people isn’t gone you just helped me. Eight years ago my children got fifths disease and about a week later I was the sickest I had ever been. Since then I have never been the same. It has come and go since then but generally been getting worse causing a number of symptoms along the way. At first I thought I was crazy that it was all in my head. First diagnosed with depression, now it has gotten so bad I was finally referred to a rheumatologist. I still don’t have a diagnosis but feel like I am getting somewhere. So many of my symptoms are just like you describe, you give me hope, and finally I know I am not alone. Thank you!
Michelle Crosby said,
June 4, 2013 at 12:20 pm
You are not crazy!!! I have the same symptoms for a long time and I just came back 100% unequivocal for Parvo. I am a mess mentally and physically.
Tara Applegate said,
August 28, 2013 at 11:52 pm
I have been having full blown symptoms since April 2013
I need help I feel like I am going crazy. Positvie b19 provirus 4.4 no one thinks that can cause this type of pain. I am on bed every day I am not at work some days I don’t think I am going to make it through. I am a RN and working 12 shifts are killing me.
Tara
Angela Morrison said,
September 13, 2013 at 2:38 pm
I dont know if this will help anyone -I am type one diabetic, suffered severe joint and muscle pain for years-poss RA -then fibromyalgia. No one would listen-no pills worked. Resigned myself to life of pain. New doc did blood tests-vitamin d deficient. Was given 3 x monthly injections. Pain 95% gone and hopeful rest will go . Seems this condition leads to a lot of misdiagnosed fibromyalgia and RA.
jackie said,
November 6, 2013 at 11:35 pm
HELLO BILLIE MY NAME IS JACKIE IM 34 YEARS OLD I HAVE A 13 YEAR OLD BOY YOUR STORY SOUNDS SO MUCH LIKE MINE I WAS TOLD FOR 3 YEARS I WAS STRESSED AND DEPRESSED AT THE TIME MY LIFE COULDNT OF BEEN BETTER I WORKED MY ASS OFF SINCE I WAS 19 YEARS OLD I FINALLY BEGAN TO RUN MY OWN KITCHEN I WAS MAKING GREAT MONEY GOT BACK TOGETHER WITH MY HIGH SCHOOL SWEETHEART MY LIFE COULDNT OF BEEN BETTER HAD ALL I NEEDED AND MORE I WAS SHOWING EVERYONE WHO SAID I WOULD NEVER MAKE ANYTHING OF MY LIFE THAT I WAS ALL THE MONEY NICE CARS VERY ACTIVE NOT LIKE YOU BUT I LIVED A GOOD LIFE I WAS HAPPIER THEN I HAVE EVER BEEN IN MY LIFE . I STARTED TO GET EXTREMELY TIRED FALLING ASLEEP AT MY DESK DOING ORDERS GOING HOME EARLY TO GO TO SLEEP THEN PAIN IN MY JOINTS SWEATING SO BAD AT NIGHT I HAD TO SLEEP WITH ICE PACKS DOC TOOK TEST AFTER TEST I STARTED TO THINK I WAS CRAZY AND THIS IS ONLY HALF OF MY STORY I HAVE JUST ABOUT LOST EVERYTHING I WORKED SO HARD FOR EVEN MY JOB AND MY SLEEPING GOT SO BAD THAT MY ONCE HAPPY RELATIONSHIP FELL APART EVERYTHING THAT COULD HAPPEN DID FROM REPO CAR TO EVICTION THANK GOD I HAVE MY SON BUT ME BEING THE WAY I AM WITH PAIN AND SLEEP MADE HIM DEPRESSED AND OUT OF ALL THE MONEY AND THINGS IN THE WORLD THAT I HAVE LOST THAT KILLS ME THE MOST I PRIDED MYSELF ON BEING A GREAT MOTHER SO AFTER YEARS OF BEING TOLD IM DEPRESED I WENT TO C MY OBGYN WHO HAS NEW ME FOR 13 YEARS AND LOST IT I TOLD HER SOMETHINGS WRONG WITH ME ILL EXCEPT IM DEPRESSED BUT BECAUSE OF THIS SHE ORDERED TEST AND A MRI THE MRI SHOWED LESSIONS ON MY BRAIN SENT ME BACK FOR 2 MORE JUST TO MAKE SURE THEN TO A NERO DOC. I SAID FINALLY GOOD OR BAD ILL GET SOME ANSWERS YA WELL THAT DIDNT HAPPEN AFTER 2 YEARS OF SEEING HIM AND MANY TESTS HE SAID HE COULDNT HELP ME THEY THOUGHT IT WAS MS SO THEY SENT ME TO THE MS CENTER TOOK 6 MONTHS TO GET IN SHE SENT ME FOR MORE TEST AND HAVE TO WAIT ANOTHER 6 MONTHS TO C HER AGAIN ITS HARD FOR ME TO TALK RIGHT NOW I HAVE MY 5 YEAR OLD NEPHEW AND HES VERY INPATIENT I WOULD LOVE TO HEAR BACK FROM YOU AND TELL YOU MORE AND MAYBE GETS SOME HELP
serenamuse said,
November 7, 2013 at 1:54 am
Jackie,
You’ve sure had a rough time and I’m so sorry. Have you been positively diagnosed with Parvo B 19? I never did find answers from the doctors. They did not have anything to offer but meds, that didn’t help for long and had serious side effects. I have managed on a clean vegan diet and moderate exercise. I get massages fairly regularly. I did see a chiropractor for a couple of years and that helped. I have since then focused more on resistance training and yoga. I have to listen to my body and take naps and have slow days. I work part time, could never manage a full time job now. I am fortunate to have a supportive spouse with good insurance. I really would though look at the positive changes that you can make in your life. As well as going vegan I cut out sugar and soda. I drink green tea, water, Pero, soy milk, almond milk, coconut milk, the occasional soy late as self medication!
best of luck!
Serena
Jackie said,
November 12, 2013 at 5:11 am
This all began 13years ago when my niece came down with fifth disease and her doc said if she was around any pregnant so my ob tested me right away that came back positive so I had to have I also had to have an ultrasound with my son every two weeks to make sure he was healthy and thank God he came out healthy even 8 years after I had him I was have severe joint pain they couldn’t figure out what was wrong with me so they asked my mother if she knew if I could be withdrawing from any kind of drugs witch all they had to do was test me or even ask me I never did drugs but about 3 years ago maybe a little longer its gotten so bad its gotten to the point that I don’t even call my doctors anymore because not one of them can or haved helped me they agree it’s something but what at times my face feel like its on fire like if someone slapped me but comes and goes itching all over body here and there I do get blister like bumps on the soul of my feet and hands also an underactive thyroid I know im extremely depressed now who wouldn’t be my life is my bed lately I get unexplained bruises all over my legs lessons on my brain and pain so bad most of the time my shoulder the worst so yeah I’m a little depressed to say it best but before I started to feel like all this I work two jobs what a single mother and did what I had to do all the time I don’t even know the person I have turned into now and all I want is a answer and then maybe I can start from there as I look over blood work I had there were so many things the didn’t tell me I waz going back and forth to the doctor every other day tested for everything under the sun but was to thi.gs were all fine come to find out 3 months later that my thyroid was 150 by another doctor I just happen to see that day I told him you guys checked my thyroid andit wwas normal he said well so he went back and looked at the test and said its far from normal okay then right there im thinking to myself what else could they have over looked so I got records disc from mri and all of them so I have gone through some of them I say a H or a L next to it so I looked some up im just scared this could be something so fixableif ccaught early but lately im feeling worse I have to figure it out ASAP if not for myself but so I can go back to begin the mother my son knows and needs
manxie said,
March 7, 2014 at 11:50 pm
Hi Jackie.
Reading your story has amazed me – I have all your issues even the blisters on my soles! I got parvo virus (which was diagnosed) 18 years ago from my toddler son. I have never been right since although my issues flare up and then subside- much worse in sun or when I have had viral stuff going on. Recently diagnosed with Lupus but I am confused if the parvo triggered that or if really it is all the parvo. Started plaquenil for that recently which does seem to be working. Would love to chat more as we seem to have very similar presentations and maybe we can help each other? if nothing else helps that someone else gets it all!!
Ali
Mary Grosso said,
May 8, 2015 at 2:04 am
Test for Hemochromatosis Toxoplasmosis lesions in brain cna cause a lot of your symptons (toxo) Parvo is associated with Hemo and toxoplaasmosis they say they have tested for everything but have they tested for these
Lynn Durbin said,
December 6, 2015 at 8:03 pm
Thank you for your personal story. I believe you could become if you haven’t already a woman that can help many others. After all you have been through with your husband and yourself in the “messed up” medical system you could help guide other patients and their families navigate and provide emotional support.
Sheri l. said,
January 7, 2016 at 3:22 am
I’m going through the exact symptoms that you are minus not Being able to walk. I don’t trust any doctors, only doc I ever liked because he actually paid attention to what I was sayin, never tried to rush me out the door with the next best meds that big pharma pays the docs way more than his patients pay him or her. Don’t even get me started on that rampage …But in the past 2 years I gotten where I can’t hold. job, and can’t ever find the energy to spend any fun play time with my kids. So my foot was completely asleep, felt like needles in it half the time from the time I woke up one morning , about 2 1/2 months ago, lasting me close to a month. That was when I went to the only doc I have ever liked and l he could so was run blood tests, which he then referred me to a rheumatologist, where they informed me that I was showing up as having some sort of audioimmune disorder. Said all my organs showed working fine. Not even high cholesterol. So the rheum Dr asked me a bunch of textbook questions to see if I in fact had an audioimmune disorder, and since I answered honestly to all then she said that I would have answered yes to at least one and the testing must have not been correct. So they sent me to their lab for more blood work almost 2 months ago now and have never heard back. My point of this novel I’m writing is yes I totally feel your pain of what it feels like physically for you and also how much it sucks that docs only care about money now day and don’t ever want to take the time themselves to try to fund the problem and solution for all our problems. I also take suboxone for previous pain pill addiction, and adderall for previous meth addiction. And they always treat me real nice until I them those things, then I feel their importance in trying to find out what’s wrong go right out the door along with their half ass caring mood. Happens evertime. I wish u the best and hope that all of us on here become cured from all these debilitating illnesses
cally said,
September 23, 2016 at 3:49 pm
Have they tested you for lyme?
Rose Frankcombe said,
September 27, 2016 at 2:14 am
Hello, Billie, I have been diagnosed as having had Parvo some time in the past but it is not present now, according to the blood tests I have had recently. However, I have been seriously ill for the last several months, only becoming aware of just how sick I was in July, when I had a bone marrow biopsy and it was found that the marrow had stopped producing red blood cells. The anaemia I had developed was so severe I have had eight blood transfusions over the course of July – August. The reason for this reply to you is that I have been put on Prednisolone and Cyclosporin, which I think may well be the same or similar drugs to the Cyclophosomide and Prednisone you mention in your post. When considering some of the side effects of the medications we’re prescribed, to add to our knowledge we need to read the list of those possible side effects that can arise from these various treatments. Here, the lists come with the medications via the pharmacists. Sometimes the lists are scary to read, but we have to be circumspect about them and just add aspects of them to our knowledge base, knowing that for the most part we will not succumb to those more adverse reactions. During the course of time, I was told by one medical practitioner that Prednisolone can lead to significant weight gain, as it makes the patient hungry. Fortunately this has not been the case for me, as I have been on a LCHF (low carb, high fat (good fat), no grain) diet for about ten months and am actually gradually losing weight by design, not ill health.
As far as the parvo is concerned, I had absolutely no idea about it and, when in hospital I was regarded as a ‘mystery’ as the team tried to work out what was going on with me. I always responded to the questions about symptoms such as ‘anything ‘flu-like, arthritic pain or a rash’ with a no, no, no, as I otherwise felt reasonably well, apart from the Hb count dropping within a few days of a transfusion and the need for yet another one imminent. I simply couldn’t remember anything of that nature the team were asking having occurred in the recent past. At the time I hadn’t twigged that it was signs of parvo they were searching for – but I’d heard it mentioned in passing when the students came into the ward to see me, as they did most mornings I was there. Parvo to many is something canines and felines get, so that’s as much as it meant to me at the time. Later, when I had been discharged from hospital and I’d returned for one of the regular reviews, I had more blood tests arranged, one again being for parvo. Ironically, that very morning I’d woken up and thought to myself how great my joints and limbs felt in comparison to how they were last year. At home that evening, my curiosity aroused, I thought I’d look up parvo on the Net, searching for images of those who’d/who suffer from this virus. Suddenly my memory came flooding back, as the images on the page I was taken to were exactly those I’d looked at once before, months prior, when I was trying to decipher what the red disk-like skin eruptions were around the base of my neck. I couldn’t believe what I was seeing, as the site only mentioned ‘slap cheek’ and, although parvo may have also been mentioned at the time I was initially looking, as said, it wasn’t on my radar, so obviously it didn’t register in my mind. I only became aware of the disks around the neck when I looked in the mirror, telling myself I should see my GP, but I never did remember to mention this phenomenon when I’d called in to see her on other matters, as there was nothing other than the redness to note. No itching, no distress other than the unsightliness of it. It was only when, back at this site, I recalled the dreadful aching limbs and fatigue I’d suffered late 2015, and the the cold laser treatment I’d had on my knee that I could hardly bend without difficulty. I’d been sent off for xrays on the joints, so next day I telephoned the centre to see when I’d been in last. The answer saw so many aspects of what was going on fall into place. November ’15, xrays. December ’15, laser treatment – and throughout that time the annoying ‘rash’, which I hadn’t actually recognised as a rash because to me a rash was little eruptions all over the skin, weren’t they…and now it was not showing any more. Well, actually when I do look closely it is, but very, very faintly, as I peer at the skin to see if there are any traces left.
Today I was curious about whether parvo can return, as I was of the understanding once you have had it you can’t get it again. But I feel this may not be quite so, as far as symptoms are concerned, because last week, the aches returned, and my thought processes were not as clear as usual. The aching back, the sore joints and even a slightly runny nose. This week, nothing. Gone. But the curiosity remains about this virus, hence my morning’s search. People sharing their experiences greatly benefits those who are in that limbo land of confusion and distress as they valiantly search for much needed answers to their questions.
Oh, and as far as the red blood cell manufacture goes, the first treatment I was on, Prednisolone, did not achieve the expected outcome, so I was switched to Cyclosporin with a lower dose of Prednisolone – and I’m happy to be able to say, as I’ve watched my Hb count begin to rise on its own without the need of a transfusion over the last month, that I’m now back in the ‘normal’ Hb range and getting along fine.
Best wishes to all who are on this path. May you achieve your goal and return to optimum health…Rose
Timothy timtak Takemoto said,
October 4, 2016 at 12:46 pm
Alas Dear Rose, there are several people on this forum (commenters on this blog post) who find that Parvo comes back! This scares me lots. I had three or four months of nasty debilitating Parvo. I am better now but the virus may hang out in the bone marrow (or somewhere), and in some people comes back at the change of the seasons/weather or in times of stress. But not always.
There are those that use Intravenous immunoglobulin therapy (IVIG) to good effect. This is, afaik the only know possible-cure. That is to say that IVIG cures some, apparently.
Other than that there are dietary things that one can do to make re-occurrence less likely.
I find that Goreisan, a Chinese/Japanese herbal medicine helps reduce the biggest symptom, edema and kidney pain, that I had. But it does nothing for anaemia, which I also had (have?) though far less severely than in your case.
I went through all the posts in this forum for suggestions of what to eat, and what not to eat.
What to eat:
organic fruit and vegetables
only grass fed meat
leafy greens
B-vitamins
smoothies and salads
greens, fruit, veg, nuts, seeds, whole grains, legumes
vegan diet
ginger too
raw fruit and veg
cocoa powder
green tea, water, Pero, soy milk, almond milk, coconut milk, soy late
soy milk, hemp milk, green tea, herbal tea,
veggie sandwiches on flat bread at Subway
spinach, oil vinegar salt and pepper
bananas, apples, nuts or Kashi granola bars
oils and vitamin
lots of water
apple vinegar and honey,
bee pollen
royal jelly, propellis
fish veggies and low glycemic fruit
coconut oil, coconut yogurt
broccoli
apple cider vinegar
hummus salsa guacamole
probiotics and fish oil
black coffee
hot lemon water
tumeric
Olive Leaf Extract and Echinacea
What not eat or drink
sugar, salt
breads
Seet tea
gluten
carbs, additives, sweeteners, splenda
meat, no dairy
mayo
soda
caffeine
peppers
junk food
packaged, processed foods
alcohol
caught by surprise said,
July 29, 2009 at 9:20 pm
Hey–
About 2.5 months ago I got sick, low grade fever, aches, joint pain, etc. However, I didn’t seem to spring back. I went to the rheumatologist, and was negative for Lyme, RA, SLE, but had a really high IgM titer to Parvo. Great, I thought, I’ll just get over it in a few weeks.
Alas, I didn’t. My muscles still hurt, I’m weak, have migratory aches, enormously fatigued, and an ulnar nerve entrapment in my left arm seems to have been worsened by the experience. I have tremors after exertion some times, and of course I’m really worried that I have not lingering parvo, but some horrible neurological condition like ALS or MS or something else I don’t want to think about.
I was never sick before, but now I feel like I’ll never get better. Could all of these things be due to the Parvo?
serenamuse said,
July 29, 2009 at 9:49 pm
In a word Yes. All things are possible from Parvo and your story sounds like the typical story. HOWEVER! Give it three months time before you start to really worry. Post viral fatigue can take that long to work itself out. You may find in another couple of weeks you are back to your old self. I would say, even if you do start feeling better, take care of yourself! Eat for health, rest, (pointless I know, but…) avoid stress. Many a chronic Parvo sufferer did get better for a while then even a year later, going through a major stress, like a move, change in job, death in family etc. had a resurgence of the illness and then never quite get rid of it. So, have hope, and do everything you can to give your body nutrition and rest. Good luck! Let us know how it goes.
amanda said,
August 22, 2009 at 4:24 am
I was diagnosed on June 22nd. I also had the low grade fever, aches, joint pain, the week before. I noticed that on June 19th I was itchy a little bit with no signs of a rash. On June 21 after a shower I had a rash all over my legs and arms. On June 24 my hands were so swollen and achy I went to urgent care. Ever since then I have been driving myself crazy thinking I might have ALS and MS as well. I would have one good day and then one bad day. I did however have 2 good days in a row after a massage and trying this drink called Elations which I purchase at Walmart. I have to remind myself that I am not getting worse and that I am getting (slowly) better each month not day.
caught by surprise said,
July 30, 2009 at 12:54 am
Is the last entry a response to what I wrote earlier? It seems to have disappeared…
Alii said,
August 8, 2009 at 1:40 am
I am so happy to find this blog. I have a story and I’m looking for help. Please read and respond if anyone has anything to say about it.
In May 09′ I was ecstatic to move from Texas to the big island of Hawaii for a three month volunteer stint with a national park. I met a lot of tourists and hiked 1.5 to 5 miles a day. It was a very stressful experience where I shared a room with a mentally unstable bulimic cutter and worked hard all day standing 8 hours a day. We were drinking catchment water from roof tops and there was a parasitic disease going around from eating organic crops.
Two months in, I lost me appetite. I took a pregnancy test and it was negative. Then came a purple bump on my bikini line. I thought it was an ingrown hair and tried to cut into it at which point I felt an electrical buzz and pulled away. After that I developed what I think was a clear swollen saliva gland under my tongue that I squeezed, it went away, came back, and went away again. Soon, one day after a hike where I was wearing a heavy radio on my belt, I notice pain in my abdomen. I was out of work for 2 days with a heating pad on my tummy trying to recover. For weeks I had been having random individual hiccups that came out of nowhere.
A week later as I was trying to go to sleep, and I started feeling muscle twitches all over my body. It was very annoying so I got up took a multi-vitamin, had a niacin reaction, took 2 benadryl vomited it all, and went back to sleep still twitching. I got up a few hours later with a tremor and still twitching.
I started missing more work, they took me to an urgent care clinic and I was told it was “stress”. I had began to feel very very fatigued all over my body, I was dizzy, out of it, couldn’t stand up very long, I would unintentionally yell out while trying to go to sleep. And still many muscle jerks several times a minuet, some large, some hardly visible, everywhere from my face to my toes to my stomach, back … one of the weirder ones was when I felt the muscles in the top of my mouth jerk.
One day at work I couldn’t even stand and they called an ambulance. I was told I may have a slightly irregular heart beat and general malaise. They put me on oxygen and I was given a drip of fluids and magnesium which they later found out was unneeded as my levels were fine. I hardly got any attentions and as soon as they determined I was stable, they send me home with no diagnosis but “myoclonic jerks”, which really doesn’t mean anything but the obvious fact that I am jerking. At that point, I booked a flight back to the mainland.
My chiropractor who saw me first when I got back ran an electrical machine on my muscles and gave me an adjustment, both of which made me optimistic and temporarily feeling better, did nothing in the long run.
From my family doctor, I got standard bloodwork at home and it was all normal but my B12 level had dropped to the 200’s where it was in the 400s the year prior. I was given B12 injections 1x a week for 3 weeks and it shot to the 2000’s but symptoms did not change. I started getting random pain in my toes, fingers, and upper arm around my joints as well as some redness. The pain would stay for anywhere from a few seconds and be shooting to be aching for a few hours.
We thought I might have a gluten intolerance so I stopped eating wheat and gluten. Then I started getting itchy palms, and new floaters in my eyes which I had never experienced before in my life as well as small sparks that would happen like as if a pixel was missing on a computer screen, but in my vision. I had 2 panic attacks in my sleep and woke up with my heart beating as if it was going to blow up. My stool turned yellow, I had diarrhea, and I started vomiting and having nausea from time to time. There was also a point where my hip joint gave me so much pain for a whole evening and night I couldn’t walk.
My blood tests came back negative for the gluten intolerance. So my diet changed back, I started vitamins. Sometimes, in the evenings I felt as though my heart was beating too hard or I wasn’t taking in enough air. I would feel numbness and tingling in my back, arms, legs, and strange electrical sensations from time to time in my feet and other areas. With my doctor baffled, I was sent to a neurologist who did and EEG, EMG, MRI, and a slew of other tests including more blood tests, all which came back completely negative. Then I was sent to a Rheumatologist who after the initial exam, had no idea what was wrong and ordered more blood tests which I am still waiting to see the results of.
In the midst of all this, I started getting hives on my upper body and started going to an allergist who diagnosed me with a bunch of allergies to things like eggs, dust mites, oak, and more as well as acid reflux disease. I had a camera threaded through my nose and throat and a CAT scan of my sinuses. Even with anti allergy everything, going on Zantac, and no longer eating foods I’m allergic to, I still have hives and other irritated itchy red bumps on my upper body.
Today at the doctor, new blood tests came back and I’ve tested for Parvo. I don’t know much more than that and I don’t know much about that virus and if it could possible be causing ALL these problems. It has entered my mind that it could be Parvo along with something else… I don’t know.
It’s been almost three months since the muscle spasms started, and despite different weird symptoms coming and going, I have gradually been improving in the areas of fatigue, dizziness, tiredness, and muscle fasciculations. I have been so depressed and had so much anxiety since this all started.
I guess my objective in posting this is to ask if anyone has had any of these similar experiences, to find out if anyone thinks this is more than just Parvo, and, just get some support and info. I’m a 25 year old female and my life has basically stopped because of all this.
Please, contact me.
serenamuse said,
August 8, 2009 at 4:12 am
Wow, Alii, I’m not sure what to think. Your story does not sound like the typical Parvo infection. Usually they start with a rash, then joint pain, sometimes fever, then the fatigue sets in. Basically when you are diagnosed with Parvo it is because they have run out of options. I was tested for everything under the sun first, including lymes disease, finally by elimination, they determined it was Parvo – which I tested positive for. There is much that is not known about Parvo. Parvo does effect the entire body, so hard to figure out what is Parvo and what is not. I’m interested to hear if any other people who visit the site have similar stories. I guess I’m thrown off by the catchment water – could it be a parasite or something like that? Anyone have answers for Alii?
Tam Wedgwood said,
August 24, 2009 at 7:03 pm
Hi Alii.
Your story sounds horrific, & I’m really sorry to read it, but like Serena it doesn’t sound typical of Parvo to me. (If you read a few entries on here you’ll see a strong pattern of what is typical.) I don’t doubt you have parvo since the test caught it, but I would think you have to look for something else as well. Maybe you caught parvo because your body was at a low ebb due to some other problem caught in Hawaii – like Serena says, to me things like the lump on your belly, the dirty water etc etc sounds like a parasitic infection.
Are there tropical parasites over there that you could look into, see what the symptoms are???
Rebecca J. said,
June 30, 2011 at 12:11 am
Hi there,
Wow, I can’t believe that you are describing so many of my symptoms that all the doctors keep saying are unrelated. Dizzy, imbalance sometimes, numbness in my arms, legs, back, eyelids, at times I get that weird electircal sensation in my back too, tired, foggy memory, joint pain (mainly my knees and lower back) and I also get strange vision- sort of like I’m looking through a window that has rain on it. They have tested me for everything under the sun too. They so far have diagnosed Antiphospholipid syndrome and Raynaud’s Syndrome. I have also tested positive for active parvo in every blood test. In my opinion, the parvo is responsible for triggering the other two syndromes which are auto-immune issues. At this time, the docs want to test me again for Lupus and still the chronic pain continues without an answer along with the other weird symptoms. I am seeing a new rheumatologist in a few weeks that also uses homeopathic methods and I will update you if he has any answers.
Dana Bailey said,
January 9, 2012 at 4:11 am
Hi,..I was diagnosed with Parvo in 2009,..I was extremely fatigued and the whites of my eyes were completely blood shot..solid blood red ! I went to my doctor, He took one look at me diagnosed me with the Parvo virus. My joints were so swollen I could barely walk, I couldnt hardly eat and going out into the sun made me feel as though I would just fall out ! My body was covered in a rash. I had a severe case of arthritis caused by the virus & the pain was unbearable ! To this day I am fatigued and possibly have fibromyalgia due to this Chronic illness. I feel like I should have been hospitalized but unfortunately I suffered through months trying to nurse myself back to health !
Dana Bailey said,
January 9, 2012 at 4:18 am
Also,..I have severe floaters in my eyes…My Optimologist concluded that these are a result from the severe inflamation in my eyes ,,,The jelly filled sack in a persons eyes that usually starts to detach when u are much older,….Mine are detached now at 36. I have always been anemic so the virus hit me really hard ! And 3 yrs later I am still suffering aches and “brain fog”.
serenamuse said,
January 9, 2012 at 4:21 am
So sorry Dana. Your story is fairly typical. I too have suffered floaters. I had not related it to the parvo. It seems that one can’t consider any symptom without bring it back around to the Parvo. Have you tried diet change?
Paula said,
January 29, 2013 at 12:50 am
I am a 42 year old female positive for active parvovirus b19 with levels at 11. I too have a lot of the same symptoms. I have had three spells since may 2012. It is now jan 2013. Each time I’ve been given prednisone and the symptoms have gone away only to return in a couple of months. I have joint pain in upper spine hands feet wrist knees. I too had a purple bump on my bikini line to start. I have jerks at night and muscle weakness. I also have tingling and electrical like feelings in different areas. Before this spell my right hip ached for about 2 months. I have night sweats. I recently have had iritis inflammation of the eye as well. The eye doc thinks it is something systematic. I have an appt with a rheumatologist in 1 month. Quickest I could get in. It’s scary. I also worry about ALS or MS. I’m looking for help, answers and a dr. Who cares enough to help find out what is going on.
Leslie said,
January 29, 2013 at 4:20 pm
Hi, Paula… I really had to dig to figure out what the heck was happening to me as I had seemingly disparate and unrelated health problems beginning about three months after positive parvo test with many doctors never connecting them. Now, over a year (almost two years) later, still positive with DNA and a cautious “maybe” from the doctors when I suggest all these things are related to the parvo. I, too, worried about MS, cancer, etc. etc. because I couldn’t imagine being so sick so long without it being BIG. I had the electrical sensations you mention… probably the scariest of anything. Of course you should pursue discussion and treatment, if possible, with your doctors, but I say this just to let you know that someone else experienced it with all tests being negative except the parvo dna. Doesn’t help you get better, but maybe rest your mind a little.
Tracey said,
July 2, 2013 at 1:52 pm
Hi Paula,
Your case sounds alot like mine. I am a 42 year old female that was diagnosed with Parvo B19 (got it from my kids) with IgM levels at 7.8 in April 2012. At onset my joint pain was everywhere and I felt 100 years old. My Dr. was smart enough to test right away for Parvo so I had a quick diagnosis. The initial pains did subside in a month or so but I find it is not going completely. My joint pain comes and goes. Mostly in my wrists and hands. Upon waking is the worst but sometimes lingers all day. I have cut grains and dairy out of my diet and it seems to help, but still getting some breakthrough pain now and again. I also have some dry patches on my face that are being treated as AK’s (precancerous sun damage) but are not going away with treatment and have now been biopsied. In hindsight…these spots appeared around the same time as the Parvo diagnosis so I am wondering if it is related. I have not been back to the Dr. about this since diagnosis…but have been to tested for RA and have had x-rays of my forearms and wrists and they are “fine”. Should I be retested for Parvo to see if IgM levels are still high? I know IgG levels will always be present now. Also reading this virus could trigger other auto-immune problems in people. My brothers have Chrohns, sister with Lupus…now I am concerned about me!! I have been just muddling along…but literally went for an xray of my left wrist again the other day because the pain was so bad that I had loss of mobility and it was swollen. Figure had to have banged it somewhere? Praying this isn’t going to get worse as the years go on! Any advice on if I should go to an Infectious Disease Dr. or back to my regular doctor who diagnosed me? Thanks for your (o anyone reading) help! Tracey
candice said,
October 4, 2013 at 4:14 pm
Have they checked for Ankylosing spondylitis? Your symptoms sound very much like this disease. I have parvo and the rheumy investigated Ankylosing spondylitis due to spine pain. It causes eye inflammation and hip aches. It is commonly linked to Crohn’s disease. Check out this link: http://www.mayoclinic.com/health/ankylosing-spondylitis/DS00483
Jean Hampleman said,
April 28, 2015 at 11:49 pm
You are the only one who said you had muscle spasms. I have too. After being told it was created by my mind ( it’s a powerful thing, the mind, the doc said!!!) I don’t see many cures here. I have prayed a lot thru this but it’s a huge drag. I will try the collodial silver I suppose. Let’s all pray for our selves and all of us who have this either for a miracle or a natural cure! Jean
Sarah -Desparate to find answers for my mother, my hero said,
January 2, 2018 at 2:32 am
Tracey, I saw your comment about severe pain, loss of mobility and swelling in your wrists/hands. This has been a chronic, debilitating and progressingly worse symptom for my mother since March of 2017 after get results back showing positive for adult parvo.
As the symptoms have never let up, however liver functions normalized after being on Prednisone. We have still been look for answers, treatment anything to help my mom…
So a rheumatologist has started running another run of more uncommon blood tests, one of those being a *creatinine kinase test. Which came back extremely abnormally high. This test shows the severity of muscle damage and the body’s reaction to the shock from the damage I believe.
I’m just hoping someone out there gets enough of the pieces to this puzzle their able to get help and share their success. Praying my mom will eventually get some relief.
Sincerely,
Sarah -Desparate to find answers for my mother, my hero.
Paula said,
January 4, 2016 at 5:51 am
Alii I have all of that and I tested for past parvovirus ( Igg?). The floaters and flashes started this year and I got parvovirus late 2012. I’ve essentially had everything you all say. Numb, pins, pain, feet, hands, shoulder, trembling, malaise, fatigue, blurring,fast aging, pain, neck issues, atlas bone won’t stay correct. I’d like to hear more about why some had cervical fusion? I’m looking at vitalplan.com detox now. No gluten or sugar and eating smoothies and sAlads helps tremendously
Caitlin Cummins said,
February 8, 2017 at 1:06 am
I too am 28 and positive for parvo. It basically has stopped my life for the last 4 months. I am an extremely active hard working young (was) healthy woman. It started as a very small rash on my hands and arms, didn’t pay much attention to it. Then the sore throat runny nose started, thought I had sinus infection for weeks but antibiotics did nothing. Sinus ct showed nothing miraculous. Fever headaches and general fatigue set in. Then the joint pain which is at times debilitating and unbearable started. Had carpal tunnel so bad I could not function so I went to ortho. He tested my nerves and said get your ass to general doc something else is going on. Thus started long battle of tests and doctors thinking I was crazy and depressed. It’s been 3 months of it. It comes and goes, stress and barometric changes reak havoc on me. Hands, wrists, knees, lower back and elbows. After so many blood tests for RA, lyme, lupus everything… It is b-19 parvo. I’m better, the horrendous fatigue is managed now but I’m still having horrid joint problems and just have no idea how long it will persist? Had to quit one job cause I physically can’t do it and my active hard working physical abilities Ive always have seem to be diminished greatly by this horrible virus. Not sure ill be able to do my job this summer as it is so physical. Basically im 28 living in an 80 year olds body. It’s horrible. I feel for all of you and it’s nice to know im not alone and that this isn’t some childhood disease that will just go away and be fine. Nope I got it bad and hopefully not for years like many of you. Some things that help me: lots of rest, less stress, yoga…and every morning I do raw local honey in hot water with pinch of tumeric, teaspoon of cinnamon and 1 tablespoon of Apple cider vinegar. B,C, D Vitamins, pro bios and anything to build your immune system. Other viral things do seem to trigger flare ups for me. And weather has been torture on my joints. I’m sorry for all of us, I feel for you all!
Penny said,
August 2, 2017 at 5:12 am
I have had all of these symptoms!
I’ve been to numerous doctors and have been diagnosed with Parovirus.
Still looking for answers
caught by surprise said,
August 14, 2009 at 3:22 pm
Well, I am about 3 months post infection, my IgM levels have started to drop, the IgG levels are stable, but I am still PCR positive. The interesting thing is that no one seems to know what that means. If you do a Google scholar search, you will find that there are few studies on parvo, and even fewer that are recent. It seems really hard to capture a decent cohort of patients to follow, and then to determine which of their problems is caused by parvo.
I’m having less pain, but my muscles still fatigue quite easily, and I feel twitchy and tremulous. I’m taking gabapentin(Neurontin) at night, which seems to help, but the anxiety is making it difficult to sleep.
I have to say that my primary care provider saw this as possible parvo from the first visit. Kudos to him.
Gary said,
August 20, 2009 at 9:53 pm
Hmm… perhaps I have Parvo too… although the test was negative.
Here’s my pathetic story.
Late June 2008 I got sick. Neck muscle pain (both sides, painful to turn my head). Severe headache (sinus area… forehead and eyes) and when I coughed it would feel like a sledge hammer was hitting me there. Fever (103+) and extreme fatigue… sleeping 14+ hous a day and just laying on the sofa the rest of the time. Just showering in the morning would exhaust me for the next 3-4 hours. Very difficult to think or focus but that could have just been the exhaustion and headache.
Had it 2 weeks at the same levels and then pretty much went away overnight. 3 weeks I had nothing. Then it all came back almost as strong… maybe 102-103 instead of 103+, etc. Had it for just about exactly 2 weeks again. And mysteriously stopped just as suddenly….
However the next morning I could barely walk. Joint pain and it felt like I was walking on marbles. The joint pain traveled around… knee for 3-4 days, then the opposite side wrist for a day, then the other leg ankle, etc, Had this for 3 weeks and then it went away.
Keep repeating with each flu/arthritis cycle getting a little less severe each time. By January it had become reasonable and I was getting some periods of neither set of symptoms. By June 2009 it appeared to be gone… then in early august it came back, both sets of symptoms concurrent and going on 3 weeks now. Most of 2009 I stopped having distinct phases but instead had bluring where symptoms could be concurrent.
The joint pain is mostly wrists, elbows, knees, ankles and feet. Occasionally balls of the feet and base of thumb, once a collar bone. Fever is now mild… 100 at most. Headaches are annoying but tolerable. They usually start around noon and just build up until I go to bed that night. Back in June/July 2008 I would have put the symptoms at 9 or 10 out of 10. Now I’d put them around a 2 with occasional 3-4 level days.
Through all of this I went to the ER and a bunch of doctors. 1 ER, 4 GP, 1 Rheumatologist and 2 Infectious Disease. Had over 30 blood samples with 70 + tests. 3 CAT scans, EKG, 3 urine tests, ultrasound, 14 xrays, etc.
The best they could say is that I’m in excellent health… even while I was sitting in front of them with a 103 fever!
Got tested for Hep A, B, C, Strep, Pneumonia, Lymes, WNV, Parvo, Kidney stones, kidney infection, appendicits, CytoMegaloVirus (?), and about another dozen or so that I don’t remember right now… I haven’t been to a MD since last fall since I’m tired of not getting any answers.
Through all this, the blood work has always been good, white cell count normal, etc. I talked them into a round of Antibiotics (10 day) late last fall and it had no impact.
I’ve researched the heck out of this and even considered Rat Bite Fever, Relapsing Tick Fever and a bunch of other stuff that has Fever as a symptom but most of the other symptoms don’t fit.
Had no vomitting or diareaha, no rash of any kind. The joint pain is specifically where the tendon attaches to the joint. It may last a single day or go on for up to a week. Usually during this fever stage I would also get a tickle in the back of my throat during the second week and cough a lot to try to “scratch” it… which made the headache even worse.
So far, other than with the initial round, I have been able to go to work although sitting at your desk and freezing or being drenched with sweat during my fever stage is not fun, nor is walking around the office during my arthritis stage. And I’m exhausted by the end of the day… on the other hand when I don’t have symptoms going on I feel down right good, lots of energy, etc. This spring I spent a week straight doing 14 hour days while I remodeled our kitchen at home and since I was between symptoms I felt great!
In general I’m pretty healthy, around 40. No more than 5-10% over weight, if that and during the flu stage I’m usually not hungry so I’ve lost enough to almost be at my “correct” weight and have stablized there. Very little alcholhol. Maybe a beer once or twice a month. No smoking. No drugs. Try to eat organic fruit and veggie and grass fed/grass finished hormone/antibiotic free meats although I’m also not a fan of big quantites of meat either. A 10oz, precooked weight ribeye is usually split between my wife and I for the meat portion of a meal. Maybe 3-4 oz each actual consumption.
So, that’s my last year+ with no end in sight. I’ve pretty much accepted that I’ll be like this the rest of my life and have just learned to live with it.
serenamuse said,
August 21, 2009 at 3:10 am
Gary,
I have to say it sure sounds like Parvo. If not, it could have been another virus. Either way, there is no cure for Parvo, just treating symptoms. It sounds like you have a handle on your diet. You may want to see a dietitian for more direction. I have an appointment in a week. Are you still eating dairy? I have heard a lot of people improve when they stop dairy. I would also cut out caffeine. Avoid anything pre packaged, additives etc. Don’t give up yet. Give your body every chance you can to fight this- have you tried a chiropractor or acupuncture? I went to the chiropractor for a few months – same time I started my vegan diet. It really helped. I am going through a very stressful time right now – with our trying to short sale on our house – fighting with banks and packing to move into another house, starting school etc. I am going to make an appointment for a full body massage and am eating leafy greens like my life depends on it. August is frequently a time when I start to crash again, so far I am doing much better than I have in the past. I still feel it, but I am coping and have a much greater quality of life. Perhaps others will write in with some suggestions for you. Keep us informed!
Gary said,
August 21, 2009 at 12:39 pm
Yeah, “unknown(undetermined)” virus is the best the doctors could offer. I don’t drink soda/pop… haven’t for about 20 years now although I am an iced tea drinker, and cheese is one of my favorite foods.
One interesting trigger that I just recently picked up on is that once the rounds of illness stopped with the regular cycles and became more sporadic, it seems that each current “outbreak” is usually occurring right around a stressful time. We’re doing major changes at the office that have a lot of involvement from me and it’s a very stressful time… I’m having a bit more severe symptoms and for a fairly long period compared to the last 6 months. I’m now trying to research stress related or brought on illnesses but that looks to be a pretty big list too.
Good luck with everything you have going on!
caught by surprise said,
August 22, 2009 at 2:32 pm
Gary–
You can do a PCR to see if there is still parvo DNA in your system. No one seems to know what it means if you do have it, other than you have been exposed, but at least it puts parvo into the differential diagnosis. Another choice is to see if you have been exposed to enteroviruses.
Good luck
Rebecca J. said,
June 30, 2011 at 2:07 am
Interesting, the doctor told me he would run a DNA parvo test and somehow when the results came back they told me the lab forgot to run the test. I still had active parvo (IGG or IGM can’t remember which one indicates a recent infection). I was disappointed that I did not get that result and the doctor pretty much dismissed the parvo virus as the cause for my symptoms. He certainly dismissed the need to go back to the lab to retest for the DNA.
Renee said,
September 30, 2009 at 10:32 pm
WOW!!! So glad to hear there is someone else out there that has these symptoms and experiences with MD. I am a RN and I still am having trouble undertstanding it all. It all began with me in March 2009 started at night with a crushing hand pain. It continued and I went to see a ortho surgeon and ended up with carpal tunnel syndrome with 2 surgeries now. During this time I was telling the MD of the hand,finger, wrist, ankle, swelling with pain. In July I had a physical and told my internist of the same symptoms and he sent me to a rheumalagist who made alot of blood test, parvo begin one of them. Saw him back in September 2009 and he told me I had parvo and it would go away just like it has come on. Now I have started with a rash on my upper thighs and upper arms. So is this a good thing or a bad thing? I am not around kids except in public. My grandchildren from Sweden came for a visit in April 2009 and they were sick right before coming here, So I wonder if I got it from them. I am a tennis player and this is impacting my whole life because all I can do is work and sleep. I am still trying to play tennis but I have to get up 2 hours before and get enough meds in me to even move. I am so afraid of stopping because I am afraid I will never restart again. My MD states this will go away with no joint damage he never mentioned that it would be with me forever??!!! Symptoms have been the same for about 1 month now and I have recently started on Placqunel but was taken off because of the rash. I now am back on it because I believe the rash is part of the virus not an allergy to the med. So any support from anyone that has experience is so welcomed. I am also diabetic and have hypothyroidism. I have gained weight during all of this as well. I have an appointment with an endocrinologist on Nov. So so far I have not seen an infectious deisease MD yet. Should I or just let the rheumatolgist take care of it? All comments welcomed.
Jinnette said,
July 5, 2014 at 4:16 am
Hi I’m replying to you because I’ve currently been in bed for three weeks w a low grade fever and body aches. What struck me is the crushing hand pain I’m having along with finger numbness. It hurts so bad. I had Parvovirus ten years ago and I had two rounds of blood tests recently and parvovirus was the only positive to come back. I have no idea what to expect from here. I’m starting to get nervous. Monday the dr will hear about the Rocky Mountain fever test and if I still feel lousy, he’s sending me to an infectious disease doctor. Am I on the right track?
serenamuse said,
July 11, 2014 at 4:05 pm
If it is still parvo, and it sounds like it, there is nothing that a doctor can do for you. My doctor just went through the latest research and came back with “wait it out”. So I just try to eat clean, vegan, lots of greens, rest, exercise when I can, mediate. Does it work, not fast enough. It is beyond frustrating. The only FDA approved “fix” is the IVIG and it is only available if you are in the hospital dying of extreme anemia or enlarged heart.
Lynn said,
October 5, 2009 at 1:30 pm
I have had parvo for 4 yrs. It started with a red “slapped cheek” rash on my face followed by fever, fatigue and joint pain, specifically in my elbows. I could not straighten out my arms. I went to 4 doctors. The first told me I had “tennis elbow”, the second said it was an arthritis flare-up, the third an Infectious Disease Specialist who said I’d had an infection, but he couldn’t say what, and the fourth a rheumatologist who finally diagnosed me with parvo. Even now, when I go back to see him, he’s very skeptical. Apparently, I waited too long in the beginning to see a doctor and my bloodwork only showed IGG parvo titers, meaning I’d had a parvo exposure at one time in my life, like most people. I’ve been on tylenol and ibuprofen. The only real relief I’ve had is prednisone, but my doctor would not leave me on it more than a month. I saw him again and he said take one aspirin. Next year he said take two aspirins. Wow! Now that’s great medical care. Ugh. I am so tired of this virus. Tired of the fatigue, which has caused me to gain weight. Can’t even walk my dog and now he’s gaining weight. It’s been four years. I’ve seen some websites that mention it lasts 4 years, some say 10 years, some say you cannot determine how long it will last. Does anyone know how much longer I will have this virus? So tired of it.
serenamuse said,
October 5, 2009 at 4:11 pm
Hi Lynn,
I don’t want to be a downer, but statistics show that if you are going to get over it , you will have done it within three years. After three years your chances are very slim – according to the infectious disease specialist I saw at Loma Linda. On the upside, I really have found a huge improvement in my health through diet. Do not rule it out! Tell your doctor you want to see a registered dietitian. She can not cure you, but she can teach you how to give your body the fuel it needs to fight this – and it is a constant fight. I now swim laps on Tuesdays, walk to my daughter’s school once a week – all up hill – and drive three hours twice a week to go to graduate school – which I am handling quite well at the moment – not any more brain dead than the rest of the bunch! 🙂 Sure, it took me seven years of insisting doctors fix me to come to the point where I had to do what was in my power – the diet – salt baths – chiropractor. If your insurance covers chiropractic give that a go as well. It can’t hurt and it may just help. Others have found help with acupressure – I’ve not tried that – but if my insurance would cover it, I’d do it.
Hang in there! Cut out sugar and any prepackaged foods today! That includes drinks that come in cans and bottles – water and herbal tea, green tea are all yes – no splenda or artificial sweeteners. Only eat things in their natural forms. Give it a try.
LeeLee said,
April 26, 2011 at 12:59 am
i am so sorry to hear about your condition and yes, i am also very tired of having the parvo virus. i contracted the parvo virus from a young child at work in 2009. i have had the similar symptoms of pain, fatigue, swelling, etc. I have also developed RSD, (reflex sypathetic dystrophy) in my left hand and arm. the doctors tell me it is a nerve condition. between my rheumatologist and family practitioner, they do not know how long this condition will last. they tell me it is still a mystery. all i can say is NO KIDDING. it has been over two years and i still remain with the same symptoms. i am awaiting an appt with a neuro/pain specialist for additional help. i do hope this doctor can take away the sever pain i have all over my body. i do hope things work out for you also.
Dean said,
November 5, 2009 at 10:31 pm
I recently had to change doctors because my doctor decided to stop his family practice. He had been treating me for fibromyalgia symptoms. When my new doctor who is a PA saw my symptoms list, he ran a test for Parvo and it came back positive to have been infected in the past. He says I do not currently have active parvo, but there is not a lot known about it and it is possible that my current symptoms are somehow related, but all he is able to do for me is treat symptoms. He could refer me on to a rheumatologist or another specialist (I forget what type) but I decided not to go that route because from all I have read no one knows enough about this to really help, and it is basically wasting money.
My current symptoms are fatigue, pain in muscles and joints, especially my hands and feet but i can hurt all over. When I walk I almost have to limp for the first few steps until I loosen up. My face has a rash on my cheeks, sometimes faint, sometimes not so faint. I tire very quickly when workng, and need a lot of caffiene to make it through the day. On weekends and evenings, I just want to sit and watch tv. I just feel bad, flue like symptoms. I don’t think I run fever, I see that many people do. I have multiple food sensitivities. It is getting to be that most foods seem to cause me to not feel well. I have not seen here that anyone else has food sensitivities, so I assume that is not a symptom of parvo, but for me it makes it very difficult to have a balanced diet. My mind is not clear. I think this may be partly due to meds, but after reading others posts here, maybe it is part of this disease.
For me, it all started back in the late 80’s. Over a period of several months to maybe a year or so, I frequently had fever. Never knew why. Always had been healthy before that. Then I began to have joint and muscle pain. Then the fatigue. It would come on out of the blue. It was overwhelming. I thought I was dying. I went to doctors and after running tests on me they told me they wished they were as healthy as I was. I kept thinking cancer or something was going to be discovered, but that didn’t happen. I wished it would, then I would know the enemy, it is horrible to be sick, and not have a clue as to what it is. Somewhere along the line I discovered certian foods made symptoms worse, and by not eating those foods, I was able to improve. Stress (mental or physical) will bring on symptoms, and send them through the roof if the stress is not controled. I also have depression, but none of the depression meds my doctor helped me. Actually I think it is probably normal to be depressed when you hurt all the time. If I didn’t hurt, I think most of the depression would go away.
So thats the simplified version of my story. Any thoughts or opinions are welcomed.
Has anyone heard of mercury poisoning? I have read about it online, it can be caused by dental fillings. I do have several fillings that are mercury and I am thinking of having them removed. The symptoms can be similar to parvo from what I have read.
KL said,
July 4, 2014 at 1:31 am
This sounds exactly like CFS. I would try and find a specialist in your area who will test you for not only Parvovirus, but also HHV 6, EBV, and CMV. For pain, refrain from eating any foods in the night shade family and try to adhere to the paleo diet as much as possible.
Sarah -Desparate to find answers for my mother, my hero said,
January 2, 2018 at 2:46 am
KL – what does CFS, HHV 6, EBV, & CMV stand for? So I know what to search for? And see if there relative for my mom. Thank you.
Tam Wedgwood said,
November 10, 2009 at 12:59 pm
I would say all your symptoms sound like parvo to me & I wouldn’t worry about the fillings – unless you really want to just eliminate that possibility it would be expensive & since parvo gives you all the above & you’ve had a positive test, unlikely to solve your problems. But that’s just my opinion!
My daughter has had pretty much everything you describe since she was 6 years old; she’s now 16. The rash is sometimes there, sometimes not, sometimes vivd, sometimes pale. Swelling comes & goes too, but the pain & flu-ey feeling always.
I don’t know what you’re doing in terms of treatment but from our experience I recommend lots of vitamin supplements, in particular a really concentrated B complex. We read ‘from fatigued to fantastic’ by a guy who has had these symptoms & ‘come through’ . He said Vit B complex is the cornerstone of treatment & as soon as my daughter started on that she turned a corner.
I agree with you that Drs, including rheumatologists are not much help, but Physical therapy is worth the money – pool therapy really helped with my daughter’s pain & got her moving again. She has exercises she does each morning also. Last year she could barely get out of bed, so being told she needed to exercise sounded impossible, but once she did some pool therapy she was able to do other exercise bit by bit until she could swim or walk most days. With each day of swimming etc the pain got better. Yoga is supposed to be good for these symptoms too, but we have not tried that.
After the vitamins, watch the diet – LOTS of fruit & veg, especially raw ones, & cut right down on carbs, sugar, additives, sweeteners etc.
Also if insomnia is a problem, melatonin at bedtime helps & our GP prescribed amitryptylene also but we find these work for a while & then the benefit wears off. However, even getting better sleep short-term is worth it when fatigue is a problem. Also I believe both melatonin & amitryptelene would help your depression symptoms also – but whatever you’re on for depression might mean you’re already sleeping Ok. I just know insomnia is a problem for many with this so might be worth talking to your GP about that. Vitamins, getting some sleep, & physical therapy really helped my daughter & it’s hard to tell which helped most, so I recommend all 3.
Dean said,
November 13, 2009 at 12:36 pm
Insomnia is a problem. I am taking ambien and melatonin and that is helping. I have taken amitryptelene in the past and it makes me really irritable, so that isn’t good. I have tried many different antidepressants in the past couple years, and they seem to help for a month or so then it goes the other way and some made me feel worse.
I have food sensitivities, and am not able to take most vitamines. The only ones I can tolerate (at least that I have found so far) are the childrens chewable. I have tried taking B vitamines many times in the past, and they make me sick. It is frusterating to have this diesease in the first place, then the things that help others makes me sick…
I have seen that sugar makes me worse if I get too much. I am trying to cut back on it.
I am taking ultram for the pain, and it does work, but it makes me really irritable. Those are the meds I am taking, and basically I am just enduring. My job keeps me on my feet 10 hours a day, and that is very hard on me, So I work 40 to 50 hours, sit around most of the weekend trying to recover, then go back to work. Seems like a viscious cycle but there is no choice that I see.
I found the book you mentioned on Amazon and plan to get and read it. Thanks for the info.
Tam Wedgwood said,
November 13, 2009 at 3:34 pm
It sounds like your experience with the anti-depressants is the same as our with the sleep medications – they help for a while & then the effect wears off. That’s frustrating. Our Dr. tells us to increase the dose of amitryptelene & give it another chance, while my daughter is like ‘What’s the point, it doesn’t work any more, I need a better answer’.
I think you can get the B-complex as shots rather than in tablets – have you tried that?
Also target have a range of chewable adult vitamins- so you’d get the chewables but in a higher dose. Have you tried adult chewables?
Sugar is a problem but also we have found the artificial sweeteners are even worse. A nurse told me these sweeteners are a suspected cause of auto-immune disease and definitley make auto-immune symptoms worse. Parvo attacks the immune system so she advised us never to use any products with artificial sweeteners. These can be in all kinds of things- including the vitamins, so we have to read labels. I would think your food sensitivities are an immune issue too, so could this be a factor for you if you are avoiding sugar?
Ironically my husband was having worsening symptoms of his epilepsy (& getting very irratable) I read that artificial sweeteners can do that too because they affect brain function (they are neuro-toxins). Since my husband stopped drinking diet soda his epilepsy has been fine & his mood is much better. So now our whole household never buys the diet stuff. We try to avoid the sweets, & rarely drink soad at all, but if we need sweet go for sugar any time over the sweeeteners.
serenamuse said,
November 13, 2009 at 5:59 pm
Insomnia is the subject of one of the paintings I am working on. That was one of the first things that changed when I changed my diet – I started sleeping at night. I think that may be the key to my doing better during the day. The question is, which change did it? Maybe it was the no Coke Zero, stopping the use of artificial sweeteners. Perhaps it was just a combination of things. The drugs never worked for me. They would just make me so tired, drugged tired, but my body would not sleep. It was horrible. The only thing that would help me survive the night, was getting on the floor and doing pilates stretches.
Dean said,
November 13, 2009 at 4:54 pm
I don’t use any artificial sweetner. I do use stevia which is a plant extract and tastes like artificial sweetner. Not sure what is in the vitamins so I’ll check that.
I am going out shortly so I will check target for the vitimins…if I have a reaction I am sick for 1 to 4 days…I really don’t like trying new things, but in this case the benefit outweighs the risk I guess.
Wish i knew what it was I am reacting too, if it is the same ingriedient in a chewable form, I will still react. The shots are another possibility i have thought of, but not acted on. Do you get those from a physician? Is it monthly?
As far as my depression goes, I really think most of it is from not feeling well, or my food sensitivities. When I eat something that causes a reaction, depression is the first thing I feel, then muscles get weak and start hurting and I am miserable and just want to hide away in a closet somewhere. That may be why depression meds don’t work for me. I don’t think this type depression is what these meds were intended for.
Tam Wedgwood said,
November 13, 2009 at 5:50 pm
I really don’t know much about the vitamin shots – just heard of it, but I think you can get it from a GP – it would be worth asking. Someone else on here might know more.
Vitamins really have helped my daughter so I think if you can figure out what you are reacting to (& whatever it is might not be in the shots???) it would be worth trying to find a form that you can tolerate.
Am with you on depression- rheumatologist insists my daughter has depression. We don’t think she does. Sometimes she feels low or sad because the pain gets her down or there doesn’t seem to be an end to this illness, or maybe she’s just overtired. But there is a big difference between feeling (justifiably) fed up because you’re ill all the time, & being depressed.
There is a big difference between staying in bed because your legs hurt if you move & you get dizzy & faint, and staying in bed because there doesn’t seem anything worth getting up for. For some reason I couldn’t get the rheumatologist to understand that!
Also even if you genuinely have depression, if you have it because of the illness then treating depression isn’t the answer – they need to treat the other symptoms so you have less to feel depressed about. You could be very right about this is why the anti-depressant medicines aren’t working for you.
You make me glad I didn’t choose that route with my daughter. I also felt that the rheumatologist was looking at a stereotype of a teenage girl rather than seeing the individual person. OK, she’s 16, she’s been sick & in pain since she was 6 years old ‘she should be depressed’; teenagers are moody & get depressed: “she must be depressed’ in fact, except for occasional bad days she is very upbeat and coping really well with a very tough situation. And being told they “knew” she must have depression is not what she needed to hear. She needed things that would help the pain & fatigue . I hope the ‘Fatigued to Fantastic’ book helps you like it helped her.
Dean said,
November 13, 2009 at 11:06 pm
Well, for me that is another thing. When I am tired and still have 5 hours to go at work, that is depressing. Pain and fatigue cause depression I believe, and again, I don’t think antidepressants can solve that.
I think doctors do tend to stereotype. I think they are taught that. And I haven’t fit their mold now for a long time. No one with this disease will. That is one of the things that concerns me with this health bill that is being discussed in politics right now.
I will call my doctor Monday and see about vitamin B shots. I also looked at the ingredients on the vitamins I take and aspartame is on the list. I didn’t know that before now. I found some other ones that I am going to try that do not have it.
I am really sorry your daughter has this, I was near 30 when I lost my health (I am currently 52). I can not imagine what it must be like for her as a teen and be going through this.
Thanks for your help.
serenamuse said,
November 14, 2009 at 5:59 pm
Nothing like having to push through. That is depressing, then you feel even worse the next day. I am taking a six hour painting class, some days the instructor decides that we will not get a lunch break in the middle but paint through so we can get out earlier. I need that break! When we don’t get the break the last two hours I am just dragging, not painting effectively and watching the clock till I can get out and eat. Funny how food is so important to me now. I have found a place in Laguna Beach that does an amazing minestrone soup – vegan. After eating that, I have the energy to drive the hour and a half home.
Dean said,
November 15, 2009 at 2:07 pm
For me, with my food sensitivities, food is many times an enemy. I usually feel my best when I do not eat at all, well at least to a point. To your knowledge is food sensitivities a part of parvo? I can not eat many healthy foods, fixed in a healthy way. Oats, lemons, limes, rice, hot peppers, pineapple, banannas, wheat to name a few. I do get away with a little wheat, but any ammounts of the others and i get sick. Fatigue, muscle weakness and depression is what happens to me, not to mention diahreah and other digestive problems. It can take several days before i start to get back to normal after eating one of the offending foods. Having a balanced diet is almost impossible. Most vitamins do the same to me. Talking to people about this and they tend to think it is in my head, so I keep it to my self and try to not have to eat out anywhere. You never know what is in something when you eat out, or at a church pot luck.
I I found the 2 books you and Tam reccomended to me on Amazon. 1 book was $1.34 an the other was $.94, can’t beat that! I did pay 3.99 shipping but still a great deal.
Isac Rodiguez said,
November 13, 2009 at 11:54 pm
Hello
My name is Isac and im 15 my momhas been diagnosed with human parvo. She has not had a pretty life and this sickness is just wearing her down. It kills me to see her in this condition. I was just wondering if you know any specialists,medicine, or remedies that could help her cope with this illness
Best wishes Isac
serenamuse said,
November 14, 2009 at 5:54 pm
Hello Isac,
I am so sorry that your mother is going through this. How wonderful that she has a son who cares and is understanding. That right there is such a big help. As many of the posts here indicate so far there really is no cure. The closest thing to a cure is that some people (mostly outside of the US) have had success with IVIG treatments. They are very costly so most US insurance companies do not want to cover it. If you look back over some of the old posts there is more information from some of our Canadian and Australian bloggers. What I found that has worked best for me is a nearly raw vegan diet. That means cutting out EVERYTHING that comes from an animal – no meat, no dairy. I also cut out all prepackaged foods that might have chemicals or additives – no Coke Zero anymore, no artificial sweetener. I drink, soy milk, almond milk, hemp milk, green tea, herbal tea, and make hot cocoa with cocoa powder, hot water, soy milk and a packet of Stevia – a natural sweetener. Avoid sugar too – it is natural but most Parvo people find it makes them worse. If you go to our resource page I have listed some books that can really send her in the right direction – Dr. Fuhrman is great. Pick up one of his books at the library or Barnes and Noble. There is hope. When I switched to the diet (not easy to do if you have a traditional American diet, but worth it!) I went through a hard week where I detoxed – head aches, muscle aches, but then I noticed I was sleeping through the night, then I noticed I was awake almost all day! The pain started to go away, I started thinking again, wanting go out and do things. My family noticed and have never let me go back. I found veggie sandwiches on flat bread at Subway saved me when I was out. No mayo, just all the veggies, spinach if they have it, and a little oil vinegar salt and pepper. Always bring along bananas or apples, nuts or Kashi granola bars. I hope this helps. Please have your mom write with any questions. I think it is great that you are taking the time to try and help her out. It took me seven years of medications and doctors to find out that nothing they had to offer helped me. The diet is the best thing I have ever done. Keep in touch!
Tam Wedgwood said,
November 14, 2009 at 7:01 pm
Hi Isac,
I am in the opposite of your situation – I am the Mom & last year my 15 year old daughter was as sick as your Mom. It is very difficult to watch a family member be so sick and feel that you can’t help.
I know I felt like her life was over already at 15: she hurt all the time and was in bed almost all the time and she couldn’t see her friends or go to school. She had this illness for 9 years, but it had seemd to be a lot better for a long time and then suddenly she was as sick as when she first caught parvo.
There is hope though because she is now a lot better than that. She is still sick, maybe she will always be sick, but she can now do most things and have a normal life. She had to learn to recognize the warning signs and stop and rest when she needs to.
The first thing that made her start to get better was lots of vitamins- especially Vit B complex.
The second thing was pool therapy and swimming. At first she felt like she couldn’t swim because she could hardly get out of bed or walk a few steps. But as soon as she started to do gentle exercises in the pool her pain got much better; for the pain that wasn’t helped by the pool she took ibuprofen (prescription strength).
The third thing was that once the pain was better she could sleep at night. Now that she sleeps better she feels better in the daytime.
She is careful what she eats: cut out starch & sugar, lots of raw fruit & veg. Make every single thing your Mom eats be as nutritious as possible. NO junk food at all, no soda. Drink LOTS of water.
The main thing is you have to treat 3 things at once: diet & vitamins; pain & exercise, sleep. If all 3 are helped, you get a lot better.
Tam Wedgwood said,
November 15, 2009 at 2:58 pm
Dean,
I am not sure about all the food sensitivities you mention, however some of them I do recognize as causing problems with Parvo. First of all the hot peppers – alll peppers (& also potatoes, tomatoes, eggplant & anything else in that family) make the joint symptoms of Parvo worse. My daughter seems to be able to tolerate tomatoes, but potatoes & peppers definitely make her pain worse.
A lot of people with regular arthritis avoid these foods too. I have a hip that seems to be developing arthritis. One day when I ate peppers my hip really hurt, so now I believe it for myself!
Bananas I have heard about also. For some reason the same foods that can aggravate Parvo also aggravate arthritis, epilepsy & migraines. My daughter has the Parvo, my husband has the epilepsy & I get migraines. Bananas, peppers & artificial sweeteners seem to make us all worse! Peanut butter is another one I’ve heard about & we now avoid as a trigger for all 3 conditions.
A ‘friend’ is ginger – especially ginger root. Can you tolerate that? Ginger is very good for nausea & also good for arthritis pain. If other foods make you nauseus this could help. You can make ginger root into a tea just with hot water & honey, & you can also buy ginger teas from herbal/healthfood places. You can buy ginger capsules too I think (but read all lables for sweeteners etc). Instead of buying Chinese food (which is often loaded with MSG & sugar) I strir fry veggies at home (but no peppers) & shred in lots of ginger root.
Rice, oats & wheat would all come into the starch/carbs category so they would make Parvo worse. We avoid those.
For example when I make the other kids’ sandwiches for school lunch my daughter gets either a green salad with pieces of egg or chicken (no dressing) or a tub of tuna fish mixed up with chopped celery & other raw veggies. And I pack her nuts etc – just anything that gives a high protein, high vitamin lunch with no simple carbohydrates.
I honestly don’t know about the citrus- I haven’t heard of that. Some people also say dairy is a problem – my daughter has cut back on milk & cheese etc as well, but there does come a point where you have to eat something – especially if you are out at a friend’s house or a restaurant or something, so she’s not cut out dairy entirely & it doesn’t seem to be a major problem.
If we eat out she will have a salad & ask them to hold the peppers & tomatoes & hold the dressing. She will drink water with a meal to avoid sugar & caffeine. The main embarassment she has now about eating out is if she needs to take her painkillers with her meal & her 9 zillion vitamin supplements which are best taken with food. She doesn’t like to look like a junky or a like she is a hypochondriac, so sometimes she will wait to take all the vitamins etc until she is at home. But most of her friends know how sick she’s been & know it isn’t ‘all in her head’ so it’s not a big deal & they can joke about how she rattles if you pick her up. Last year she couldn’t go out with them at all, so if she now goes but eats ‘picky’ & takes a dozen pills with it, they’re just glad to see her mobile again.
Dean said,
November 16, 2009 at 1:36 pm
Ginger is also one I can not tolerate. I have been told before from other people that ginger should be good for my symptoms but I have tried it several times and different ways. One example.. I have learned over time that If I want pumpkin pie at thanksgiving I have to buy the unseasoned pumpkin and add the spices one at a time rather than using the pumpkin already seasoned. The only difference is that the preseasoned one has ginger in it. When I make it I leave ginger out and I am ok with it. I didn’t know ginger was in pumpkin spice until I noticed everytime I ate it I got symptoms. I think I had to go to Libby’s web site to find out what was in pumpkin spice to discover ginger was an ingredient. Same thing with pumpkin bread.
Back in the late 80’s when I first lost my health, and my internal med. doctor told me he wished he was as healthy as I was (I was fearing I was going to lose my job because of the joint and muscle pain, fatigue and depression etc… Have you noticed that if a doctor doesn’t know what is wrong with you then you must be ok and it is all in your head??) I started looking to alternative voices on what could be happening to me. I found a doctor that gave seminars on food sensitivities and alergies and attended it. Although not everything he presented applied to me, I learned how to find a safe diet in which symptoms are at a minimum. Then introduce one thing at a time and see how you respond to it. I have spent over 20 years dong this and have discovered many foods that do affect me.
Now that I know I have been infected by this parvo virus (I found out in august of this year), I wanted to explore wether or not that was the reason for my food sensitivities. Back in the 80’s this link wouldn’t have been possibly been made yet. This doctor I saw at the seminar had the AMA watching him closely because they wanted to shut him down. Truth is he is the only doctor that actually helped me at all. Wish I could remember his name and could find him again but he is probably retired by now.
After everything you have said I believe my food sensitivities are not a part of parvo. Maybe it is affecting me to a degree, but the fact that some of the things that should help me with the parvo make me have symptoms rather than help me make me believe this is mostly a seperate issue. It seems as I get older, what I consider to be a safe diet is getting narrower and narrower, and is leading me to a diet that does not supply me with proper nutrition which makes my parvo symptoms worse. I am going down this road and everything is working against eachother and that worrys me.
I am still wondering if mercury in my dental fillings and from flu shots might have something to do with my food sensitivities and the symptoms I am associating with parvo. There are people that say no amount of mercury in our body is safe. I did have flu shots and dental work back in the 80’s when all of this hit. I just don’t know..
This is probably a lot more detail than you wanted…sorry. I do appreciate your time for responses to my posts and wish your daughter luck with her situation. I know it is a difficult road.
I do appreciate this site also where we can discuss our common problems and hopefully learn from eachothers successes.
Dean said,
November 18, 2009 at 8:54 pm
Hey Tam,
When leaving work yeasteday I heard a rattle coming from my pocket….my pill container in my pocket…I thought of your daughter, you said she rattles if someone picks her up, and I assume that is her pills? Made me smile 🙂
Dean
Joey said,
March 19, 2011 at 5:18 pm
The doctor you are looking for is Andrew Weil.
Tam Wedgwood said,
November 18, 2009 at 9:29 pm
Yes it’s her pills – mostly it’s just vitamins but it does look pretty bad- either a hypochondriac or a junky!
I’m sorry, I meant to reply to your earlier post, but just got very busy- we’re going through a very nasty custody fight trying to get my husband’s kids away from their mother who seems mentally ill. And her mental state means she is not going quietly. That adds stress which I am trying to keep away from my daughter because stress makes her parvo worse. And then because of all the mess with the step-kids & their Mom I have got so far behind in work & everything else. This week has been horrible.
I’m sorry ginger causes problems for you- I’d hoped it might help.
Definitely agree about Drs if they don’t know what it is decide it’s ‘in your head’. Our rheumatologist has definitely headed that way, & got worse after a test for Parvo came back negative for my daughter recently. But it’s in her medical records that she did have Parvo almost 10 years ago & that all her medical problems started then. I am more than 100% sure that Parvo caused this.
After that length of time would you even expect to still get a positive result? I don’t think the negative result is a big surprise- I thought I’d read you can only detect it this long after with a biopsy for Parvo DNA in the bone marrow – which was not done.
After the negative blood test the rheumatologist pretty much said this is Chronic fatigue & Chronic pain syndrome & both are mostly ‘in your head’ – you need counselling, not treatment. Literally the next day I heard on the news that they have proved that chronic fatigue is a viral illness & that this is definitely not ‘in the head’- I was so mad that that news came out the day after we saw the Dr, not the day before!
No one who saw my daughter when she’s at her worst flare-ups would ever suggest this is ‘in her head’ & it is horrible seeing someone that ill & basically having no tests & no treatments – except what we’ve found out ourselves about diet etc.
My daughter seems prone to getting the flu, so this year I did get her the shot- the rheumatologist recommended it & insisted she was well enough (probably because this is “all in her head” & she’s ‘not sick’). But it made her quite ill, so she won’t be having the H1N1 shot. I am not convinced it’s safe, especially for Parvo people whose immune systems are already messed up.
Dean said,
November 19, 2009 at 8:38 am
I saw a debate on fox news between a dr for and a dr against the h1n1 flu shot. The dr against made his case against all injections that come from a multiple use bottle. He said there are so many people who come down with fibromyalgia after taking the injections, and kids with adhd and other problems and they all began right after the shot was given. Multiple use bottles have mercury in them to kill bacteria. Even though the percent of people with problems is not large, the actual number of people is alarming according to him. He sited other goverment agencies that say any mercury at all in the human body is bad, there is no acceptable safe level. Dental amalgams was the next source of mercury poisoning. The single use bottle was not a big concern the way I remember it.
Leslie said,
December 8, 2009 at 10:09 pm
I like the picture, that is how I feel today. 😦 Luckily my mom came over today and helped me with the kids. I am Leslie, 31 yrs old, very healthy (well, was), new to this site, and was diagnosed with Parvo 3 months ago. Well, actually, I diagnosed myself at first because my 3 small children all contracted it, so I knew that’s what it was. Started with the facial rash, then the lacy rash on my arms and hands. 2 days later, THE JOINT PAIN. Omg, I didn’t even know this thing exsisted! Of all the things you worry about getting one day, then it is something you never even think of, and something that you can’t cure, hardly treat, and something doctors didn’t seem to get a class on. I went in and told my doctor what I had. I said don’t bother with anything else, just test me for parvo19. He told me that adults very rarely get this and that he flat out didn’t believe I had it. I bet him $100, and he said, if I am right he will give me $100. I tested positive. I have yet to get my $$! Anyway, cute little story there, but really, nothing cute about this virus. I thought I was gonna itch my hands off the other day, now every joint in my fingers are killing me I am soooooooo tired, can barely stay upright. And this is strange, and maybe someone knows what I am talking about, but I have this restless shooting feeling through my arms. Don’t know how else to describe it. Anyway, my 2, 4 and 7 yr old are all standing here looking at me and I have no energy or hands to do anything for them. Thank God for Cartoons. My husband should be home soon. Don’t know of any treatments yet, because I am new to this, but as soon as I discover something I will share!
serenamuse said,
December 15, 2009 at 2:44 am
Leslie, I’d love to know if you ever get that $100! Some how I doubt it though. It sounds like your diagnosis was on the nose too. Sadly. You may find some articles on the resource page that will be good to show to your doctor. Doctors are a battle – at least mine have been. I admit I have given up on them for much else than the occasional broken bone, or infection. Do keep in touch and let us know how things go!
Best,
Serena
Sally said,
January 4, 2010 at 3:02 am
I just kept searching the internet and knew I would find an answer. I had the Parvo over two years ago. I had such extreme joint pain I could barely walk up the stairs at night. I thought I was dying of some horrible disease. I also have been diagnosed with Chronic Fatigue since that time. The last month my symptoms have been back in full force. I also recalled most recently having a rash on my hands and arm one morning. I didn’t think too much about it until I was hit with the fatigue. I am interesting in learning more and believe my CFS is caused by a virus. I also suffer from cold sores for about the last 10 years which is just another virus living dormant in my system.
Thanks for blogging. I look forward to learning more and sharing any information I receive.
serenamuse said,
January 4, 2010 at 4:46 pm
As you know CFS is just an umbrella term for a group of symptoms. I am hopeful though because more and more research is being done on CFS. Now that they know CFS is often caused by a virus they are working on what to do about it. If they can figure out the answer for one virus, they might figure out the answer to ours. Do keep an eye on news for CFS. It does relate to Parvo – it covers many of our symptoms – we just happen to know which virus started our symptoms.
Jinnette said,
July 5, 2014 at 4:43 am
Oh wow I just had a mouth full of wicked canker sores, forgot to mention above. My fingers and toes are numb as well.
Shannon said,
March 23, 2010 at 12:56 am
I have to say that I’m grateful for knowing exactly what is wrong with me. That it was detectable through a lab test. That there is PROOF of something. I have been reading messages boards all over the internet and soooo many people have no official diagnosis of any type. Most of them have very similar symptoms to us and yet without an actual diagnosis many of them are called hypochondriacs and told that it’s all just in their heads.
I thought I was at the end of my rope when I finally saw a rheumatologist who tested me for a bunch of stuff and ordered xrays of my hands. I was shocked when I saw the xrays – they were normal!!! I expected them to look as gnarled on the inside as they felt on the outside. I was also sure that I had Lupus, RA, and who knows what else. When I found out it was Parvo, my demon had a name at last! I’m still hopeful that I will recover (had it for about a year now) go back to who I was, but am prepared to do battle with this forever if I have to. It is exhausting (in every way possible) but at least I know what it is.
I’m having a “good day”, can you tell?! Ask me tomorrow and I may have an entirely different perspective on this beast.
Jennifer said,
May 20, 2010 at 9:19 pm
Also, make sure you get tested for tick born illness through the Lab in California called IGeneX or the one in Florida called MDL. Other LAbs only test for certain strains and are very inaccurate. Most people test negative for Lymes even when they are truly positive…Call them and they will send you the kit and then have your doctor draw the blood and send it off.
Salome' Malos said,
June 3, 2010 at 6:17 am
Hello;
Just received positive results on Monday. The Dr. referred me to a neurologist, for “my symptoms” saying there was maybe some connection with this and” my symptoms” but implying NOT really, it is not even something we treat…
MY SYMPTOMS AND CURRENT DIAGNOSES
G.A. Bi-lateral leg, calf, buttocks, hip, pelvis, all lower extremity joints, feet have extreme cramping, pain, swelling (a little over two months)
exhausted
anxiety,short fused (3 wks) or delusional from the pain. LOL
The list may go on, for now I must go rest. Very thankful to have tripped upon this site. Feeling empowered by the information, and very close to home. Will share as I learn. Most of the Medical Community where I live,are involved with teaching, learning, and practicing at a prominent University. I am hoping this can be the beginning to an end.
Francine said,
August 12, 2010 at 12:08 am
Wow…so interesting. I have never heard of Parvo before today….I have been sick on and off for about 2 years. About 5 months ago I decided I need to take my health into my own hands and went with a vegan diet and no gluten; I flet a lot better and thought I must have cured myself until 2 weeks ago when I started getting dizzy, fatigued, I developed a horrible reaction on my leg along with bruising and petechiae, I also showed the doctor the rash that I have had on my arm for a while- when she mentioned Parvo today. I still have yet to get the tests back- but thought I would do some research on it and found this site. The stories sound so familiar. Thank you for sharing your story. Anyone know about the tests? If it has been a while will it still show up in blood tests?
Thanks
serenamuse said,
August 12, 2010 at 10:08 pm
Francine,
The test that they most likely gave you will indicate if you have had an infection in the past. It is probably not the test that shows whether or not you have live parvo right now. That test is costly and avoided because either way – they don’t have any means to cure it. Stick with your diet – even though I still have down times I bounce back much quicker and over all have a better quality of life. Make sure that you are avoiding processed and packaged foods (one can be an unhealthy vegan) focus on greens, fruit, veg, nuts, seeds, whole grains, legumes. Let us know how things go! There is more information on the Resource page.
Best,
Serena
Tam Wedgwood said,
August 13, 2010 at 9:04 am
I also have little faith in the basic blood test- My daughter tested negative for parvo infection so her rheumatologist said that ruled it out- but my daughter had the infection 10 years ago- & we know she had it, it’s in her medical record from that time. When she first started getting all the lupus-like and CFS-like symptoms after the Parvo our Dr told us then that it couldn’t be the parvo causing it because ‘viruses don’t last that long’. WRONG, WRONG, WRONG!
Since my daughter has been unwell (always with the same symptoms) periodicaly ever since parvo & basically the symptoms are the sme as she had during active parvo infection, I KNOW this was caused by the parvo. But after 10 years I am not surprised by a negative blood test- my understanding is thta to find it after this length of time you need a test for parvo DNA & that test is very expensive, so they don’t do it.
For now my daughter is diagnsed with CFS, Fybromyalgia, arthralgia, & chronic pain syndrome and according to the Drs this “may have been caused by a virus but we’ll probably never know which one”. IMO we do know which one!
If it’s any comfort to anyone out there I have read in one place that Parvo often has a 10 year lifespan. When hers flared up worse than ever at the 9-10 year point I wondered if this could be the virus having one last fling before giving up (the one possible silver lining at a time when she was completely bedridden).
With pool therapy, pain management & super-doses of vitamins, no additives & no carbs she has improved – first slowly, then in leaps and bounds.We have also moved away from a very stressful situation.
This year she is hiking with me again. We don’t take it for garanted – we know CFS lurks and can flare any time, also her hips still hurt, but maybe, just maybe, she is getting her life back- it’s been 10 years, and she is now 16. I would like her to have a ‘normal’ teenage life, pain-free, and full of activities.
Brent said,
September 7, 2010 at 1:41 pm
Hi,
About 3 months ago, I woke up in the middle of the night and one of my toes was very painful. The next morning when I got out of bed, I found that my foot hurt very bad and it was painful to walk. The very next night I had the same problem with the other food. I was tested for just about everything and eventually the arthritis doc said i have parvo. The feet are still sore but not as bad, and i have a couple fingers on each hand that hurt and are swollen, some days more than others. If i set for awhile, I am very sore when i get up, i have tried to continue exercising on the good days, but it is really frustrating to feel this way as I was always in pretty good shape. The doc says it should get better but it doesn’t feel like it will. I’m sore and stiff in the neck area. Stretching seems to really help and even stretching my toes and fingers helps some. It seems that it’s hard to find much in the way of info about Parvo and no one that i talk to has heard of it in the human form. I will continue to look at your site and I would like to share my story with someone in exchange for theirs.
Brent
stephanie said,
October 6, 2010 at 3:00 am
I too hurt after I sit for a while and while lying in bed.. It seems the pain is worst at those moments and to step out of bed hurts..Sometimes I feel as though I am telling my joints to move and they do NOT respond..I want to move but cant. Kinda like a delayed reaction. I have had this disease since 2007 and have periodic Episodes of the pain and tiredness. I do take b12 injections monthly but like I said I still have Episodes.
Jessica said,
September 7, 2010 at 9:16 pm
OMG sounds like me. I’m 14 years old and has parvo when I was a toddler. Since roughly November 2009, I have had very bad arthritic joints and I feel like lying in bed all day, too. I have been tested for a boat load of stuff, including Lyme’s, Lupus and Juvinile Rheumatoid Arthritis. I go to doc soon, then I will know for sure, but my blood tests have a parvo Igg of 6.8 and my sed rate is high, as well as my liver enzymes, and my kidney function is down. Can parvo do that to me? It just keeps getting worse and worse. Doc thinks either parvo or JRA. What do you think?
Tam Wedgwood said,
September 8, 2010 at 9:56 pm
Hi Jessica, I am not sure about the liver & kidney aspects, but otherwise I would say it sounds like parvo- especially since you know you had it.
My daughter is 16; she had parvo when she was 6 & her worst year with it was when she was 14 & 15. Her symptoms were like lupus & lymes & JRA, but all 3 tested negative. I am convinced it’s the Parvo. She ended up with CFS almost 10 yars after the original virus infection.
BUT, the good news is she is better now & has been well for almost a year. The aches and pains are almost gone, & recently she caught a cold but did NOT get the joint pain & swelling, rash, fatigue etc that she usually gets with every minor virus. This is the first time she has had a ‘normal’ virus like a ‘normal’ person, without getting all the other disabling symptoms. So she is really excited that finally (maybe) she may really be getting better.
Honestly, at your age she spent 3 or 4 months lying in bed all day in constant pain & as a parent i felt totally powerless to help & I have never seen a kid so sick, so I do know how bad this sickness can be for a teenager. But if she can get better, you can.
She has gone from being completely bedridden & too sick even to speak, to doing everything that everyone else does. Pool therapy and swimming really helped her get her energy back when she was lethargic (sounds crazy when you have no energy, but it works. Every day that she swam she got a little bit more energy and a little less pain). Also healthy diet and lots of vitamins. Doctors may not help you much, (unless you are unusually lucky) but there are things you can do that help. Ask your Dr to refer you for physical therapy and pool therapy & I totally recommend the vitamin supplements. Read the book ‘From Fatigued to Fantastic’- it really helped & it tells you what vitamins to take and how much.
stephanie said,
October 6, 2010 at 2:50 am
I was pregnant in 2007 and it came to the point where i could not move in bed -not even roll over. Not from my big belly but from severe pain in my joints. I ended up in the Texas womens Hosp ERoom. Blood work was done and seems my levels showed I was at some point exposed to Parvo. I was not able to tell the dr when in my life I may have been exposed. They ordered another test that would tell them If I activally had the virus. Which came back positive. Okay so now Im 39 yrs old and pregnant with the parvo virus. I was high risk already but now even more so with the virus. I went to special ultrasounds weekly to monitor the baby. The ultrasounds were all normal thank GOD. I had other complications with blood pressure and the baby came(ceseran) a few weeks early and was fine. After the birth I continued with pain in my joints-not to mention I breast fed the baby too. I was exhausted but still trying to be a good mommy-that was to all 3 of my kids. Eventually, I decided to seek help again and went to rheum. DR and told em up front I have parvo and its still hurting me- they ran all these TESTS- on me and told me- you are negative for arthritis.. Duh Im telling you I have Parvo..They put me on some arthritis like medicine which upset my stomach and didnt really help so I quit taking it. My “Episodes” come and go and I have asked my family Dr for b12 injections which I give to myself. I had gone 6-8 mths without and EPISODE and really thought it was gone. But nope here I am having another Episode. I am very fatigued and my bones hurt while sitting still or in bed. I can do a day full of activities and then my body crashes hard and I cant seem to get out of bed. Im only 41 but feel more than that. I have not been to an Infectiuos Disease Dr but am considering it—(is it worth it) It seems there really is no help for this but the start would a Dr who specializes in PARVO. (where to find)..
serenamuse said,
October 9, 2010 at 3:55 pm
An infectious disease doctor is the closest you will get to a specialist and there is something to be said for finding someone who validates what you are going through. That said, other than drugs, possibly IVIG treatments (very expensive and still in practice stages) they don’t have much to offer. My best results have been with the vegan (mostly raw) diet. There is no way I could get through the long days of school and all the driving I do – along with having to think and be creative -without pumping myself with the most nutrient dense food possible. If anything I would try to find a good nutritionist. Give your body the best fuel you can and avoid putting in any empty calories – they only hurt you. As I have said before – it is still a struggle – but I can function on a near normal level. I do crash more on the weekends – but so do most of my meat eating alcohol drinking friends! I also have had good results with the chiropractor. Before starting school – or any other high stress time – I go to him for about a month of adjustments. It really helps my energy levels, and puts me at my best to tackle the stress. Not to mention it feels great! Massage – also try massage. I wish my insurance covered it!
TJsMom said,
November 4, 2010 at 9:17 pm
Hi, I just got the lab results back and they are Parvo positive. My odyssey started on a business trip in October of 2008. I swelled up like a balloon and my hands and feet itched so bad I wanted to cut them off to stop it. I had a positive ANA, Speckeled pattern titer, anti DSDNA and other markers in my blood work that suggested Lupus. They have never been duplicated. My health has been so bad I could not get out of bed. That’s bad b/c I am a single mom to a (now) 5 year old with ADHD and severe global apraxia. This positive test is the first time in two years I actually feel hopeful. Finally, there is a culprit for my bad health. Now, what I want to know, is what do I do about it? I already eat organic, pure water, good vitamins, avoid processed, sugary food, etc. Is there some other research that would point me to a “holistic” method of improving health? I am rather skeptical of the medical “establishment” at this point. (I mean, come on, two years to finally decide to test for something that has the EXACT symptoms I have been exhibiting for 24 months!) Any insight to resources and holistic therapies would be most welcomed. I am definitely favoriting this site. Thanks!
serenamuse said,
November 5, 2010 at 12:22 am
The best advice on the eating front for me, came from Eat to Live by Dr. Joel Fuhrman. What has made the most improvement for me is DARK leafy greens – two large servings a day – raw – go mostly raw. I went completely vegan – 85% raw and saw drastic improvement within two weeks. I’m now down to my ideal weight (lost more than 20 pounds in the past two years on this diet) 128 lbs as an added bonus. When I started I did not care how I looked I just wanted to feel better, but as you start to feel better and you are losing weight you feel better about yourself as well. I wish you well! 🙂
Catinminnesota said,
November 19, 2010 at 8:35 pm
Hello.. fellow Parvo suffers.. recently come across this website, it really is reassuring to find others.. sad but true!!!
I was positively diagnosed in April of 2009 and no it doesn’t always go away.. I was a healthy, very active, 36 year old mom at the time, life sure has changed for me!!! Now I plan activites.. I used to have endless energy.. not now… I take lots of Motrin, seems this fall is really bad…. I started the steriods this time last year!!
A HUGE THANKS to Serenamuse for this website!!! Wonderful!!!
I can’t believe what I just read on TJs mom post, your blood work may suggest LUPUS.. (is that all your Dr.s tell you too) this fall my Bloodwork is VERY similar to yours… ANA TITER is positvie.. quit high… tested 2 times..2 differnt labs.. one was 1:160 and the other was 5.1 with 1.0 being the limit…. and can you believe this…. my DS-DNA Antibody, IGG was high at 11..what was yours at? Also a few other tests out as well!!
Not sure where to start.. went to ER when the Flu like syptoms (aches/ Stiff joints ) started 4-09.. misdiaganosed….. then off to my GP the next week with the Red rash.. so very thankful for my DR. he knew it was 5ths.. my daughter had it has well.. looking back. Sorry TJsMOM that you have gone undiasgnosed… how terriable that must be! Scary!!!
Anyway.. have done the steroids/ tryed the Plaquenil (as others have had a positive outcome with it, I did not) ..this was before they told me that my bloodwork may suggest Lupus!
I HATE meds…. I was FAT, depressed, sad…I used to exercise all the time, not now!! I will put up with the pain/ aches/ fataigue rather then the side effects of meds, or try anyway!!
The problem that I have, that worries me the most is when I go up stairs.. I have a feeling of total exhaustion/ heavyness…have had that since 4-09, I remember saying to my husband.. I feel like I’m having a Heart Attack… I have had a nerve and muscle test, 2 echocardiograms also a Lung function test.. all normal!
In addition.. I have bad brian fog, ear/ Lymph node pain.. my feet and hands feel like balls.. but they are not swellen when you look at them!
So that is the start of my story.. I was to a Rummy and she was aware that Parvo can bring on Autoimmune disesases.. she has a patient that had it and it turned into full fleged RA!
Serenamuse… you mentioned the IVIG.. I’m working on trying to get that..???? the Rummy was not aware it was used for Chronic Parvo.. very $$ as you know. Did you ever pursue that?
I have been in contact with one of the 3 in the J. Kerr study.
Also I have made contact with another chronic Parvo sufferer and she has lots of info… they found out thru a Heart biopsy, that she has active PVB19 infection in her heart, also that she has antibodies against the innner lining of the blood vessels (the Endothelium) which intermittently blocks of blood flow to the vital orgams.. so this is an avenue that I’m going down.. as I have the breathing issues!!! So she gets IVIG monthly+ shots she gives herself!!!
There is a load of info out, that they are finding that people/ women who die from A typical Angina.. in boipsies that 30-50 % have active PVB19, so this is VERY serious!!! I take my sypmtoms much more serious, I have changed my attitude, I take it easier on myself, rest more, etc!!
Gosh.. glad to have found this site…. Hope to hear back.. soon!!
Best to all, Cat in Minnesota
serenamuse said,
November 20, 2010 at 12:48 am
Hi, I’ve not tried the IVIG. I asked my doctors about it and they really didn’t know anything. I’ve been able to manage so much better just with the eating that I am afraid to try anything too drastic. Interesting that you talked about the heart issues. I’ve always had those and just this week there were times where I swore I was having a heart attack. I did some reading and what I found said basically that it did not have any lasting impact. Can you direct us to what you read? It is very worrying when it happens. All of your symptoms sound so familiar. Thanks for joining in. My hope is that we can help each other through this journey.
Andrew said,
August 29, 2013 at 8:23 pm
I’ve recently read about PV B19 being a primary cause of viral infection of the heart. A recent post mentioned this and directed us to search heart disease and PV B19. It appeared from the article that invasion of many tissues and organs resulted from long term unchecked advance into the depths of the body. Did anyone else see those recent comments?
Tara Applegate said,
August 29, 2013 at 12:10 am
Can you help me
Tara4676@gmail.com
I can’t find anyone to listen I am positive for parvovirus
serenamuse said,
August 29, 2013 at 6:35 pm
Tara,
Like some of the others have mentioned, I think it is time you try alternative medicine. Doctors are limited in what they can do, even if they say yes you have Parvo, there is nothing they can do but throw drugs at you – or surgery. There is a place for both western and non western medicine – by using both we can have the best of both worlds.
Catinminnesota said,
November 20, 2010 at 1:21 am
So glad to get the post back so quickly… thanks! You have the same heart/breathlessness feelings.. only on steps..???
The gal in the Kerr study had that also and was on Ashma meds for it.. surprise .. didn’t help!!!!
I have lots of info from the gal I mentioned .. I will make sure it is OK to pass it all on… very informative.. she is EXTREMELY knowledgable and has had years to investigate this monster!!!! As she is bed ridden mostly!
I will post back!! Could you email me personally or not… jeffncathy12@yahoo.com
Thanks.. this is so reassurring to find with this !!
Cathy
serenamuse said,
November 20, 2010 at 4:07 pm
Stairs, slopes… yep. I also get faint. I am sure everyone would love to know more about the IVIG. Yes, I did read the study and it was a small group and it seems that they still have to play with how much, how often etc. …
Catinminnesota said,
November 20, 2010 at 11:46 pm
Hello…. unbelievable the similarities in syptoms.. have you been in contact with any of the Kerr study patients… I’ve been in contact like I said, with one of them and she has recently started to have some issues again.. 8 years later..otherwise really had a great result with the IVIG?
Thanks for sending me the painting, so true isn’t it, hard to enjoy events…! So trapped by this illness!!! Is the picture , you??? Wonderful!!!
Do you have the Head/ Neck pain at all?
Also do you think there was a point in the disease that your symptoms worsened?
Take Care, Cathy
serenamuse said,
November 22, 2010 at 3:41 am
I’ve not been, but am curious…
Catinminnesota said,
November 20, 2010 at 1:45 am
Tj’s Mom.. when did you have the Blood work done that may suggest that you have Lupus.. in the beginning or recently? If at the start.. it is good now???
Funny you have only had this about 6 months longer then I have….
Take care.. thanks
Cathy
I sure hope we can help each other as well… the 3 patients in the J.Kerr study.. had a great outcome with the IVIG.. could it be the life changer for us?? Within weeks these patients had improvement!!!
But like the Rummy said it was a small study and there was no placebo to go along with it.. not sure what we would need to get the IVIg..if I can prove that the endothelium is infected…. that may work!
Do you guys have any neck/ back of head /between the shoulder blades pain/ache… it is like a clamp on the back of my head and neck!!!
TJsMom said,
November 22, 2010 at 1:58 pm
Hi, Catinminnesota,
I’ve had a bad patch these past few days, sorry for the late response. My lupus-looking bloodwork was done about three months after I went to the ER with massive swelling and furious itching hands and feet (Oct of ’08). The ER people said my SED rate was 36 (it did not go down much every time they tested for about a year). They suggested…RA. My primary suggested a very bad allergic reaction to something (yes, with huge doses of prednisone). I was tested for lupus in Feb. which is when the test came back positive. I went to Mayo clinic to see a rummy–he looked at my labs and he said he’d never seen a case of lupus blossom (what a word, but it was the one he used!) right before his eyes. He sent me to their lab for repeat tests….nothing. Clear as a bell. This was March of 09. The Mayo blood work shows no indication I’d ever been sick a day in my life. The Rummy said if I was still feeling bad come see him in a year. Ha! Feeling bad?! I can hardly motivate except in the summer. Finally my primary, bless her heart, did a viral panel on me….there it was, Parvo and HHV6…eating me up for two years silently. I look back and see that it was staring them in the face the whole time. My primary has me on massive acyclovir right now. She seems to think if we keep hitting it with acyclovir it will die….I think she’s just stirred it up really good because I feel worse than I have in a long time….Anyone else been prescribed acyclovir? Did it work at all? I’m also doing the green leafy diet….and Essiac tea.
Catinminnesota said,
November 22, 2010 at 8:17 pm
TJ’s Mom
Wow.. sounds like your GP was more help then the Mayo… my GP is a godsent.. no doubt!!
HHV6 there is a bunch of info out there.. on Parvo and HHV6.. how they are linked.. I’m not real up on that.. I should be tested???
Sed rate of 36.. WOW the top limit is 20. on my lab results.
Stirred it up .. isn’t that the truth.. for me I just dont know most of the time.. what makes syptoms worse/ better.. as it may be days.. so hard!! I hate meds… so many side effects…. not being on anything but motrin.. my spirits are so much better… I just hurt/ ache!!
Better run for now.. called my Dr. again as I didn’t hear from him last week on the Blood vessel Infam test???
Will keep posting.. there has to be a way to get that IVIG.. my Ins. will cover as long as the Dr. says it is needed… just to prove that part!!!
Take care.. Cathy
Melanie said,
May 21, 2011 at 4:38 am
Has the acyclovir helped you?
serenamuse said,
May 21, 2011 at 4:52 pm
Acyclovir is for herpies? Never used it. Are you using it?
TJsMom said,
May 23, 2011 at 2:33 am
Hi, all. No, the acyclovir did nothing for me. I am dragging now that there is intense heat and a very deep drought here in N. Florida. I’ve had a lot more pain and “down days” than in the winter.
serenamuse said,
May 26, 2011 at 5:51 pm
Season changes have always been hard on me. Funny, one thing I have become to love is getting into a really hot car – that intense dry heat feels so good on my achy body!
Catinminnesota said,
November 21, 2010 at 5:21 am
I guess I posted in “my story”.. I should have put the info on the BLOG page I’ll bet.. can or should it be moved???
Serena.. such a pretty name…. I read your entire blog.. and the gal I was refering to in the Post above….with the Heart biopsy…actaully posted here on 12-11-08 ” Parvofighter” at 7:36… thought I would mention that
Your bloodwork has been “Negative….. no ANA titers or anything??
Take care.. Cathy
serenamuse said,
November 22, 2010 at 3:46 am
Hi,
I’m not really sure how the comments arrive to other bloggers. I see all of them – no matter where you post them. My last tests, two years ago were very confusing. The specialist never did call to explain them – so I phoned the lab and they were so technical that I really didn’t know what they were talking about. That is one of the problems with all of this – I’m not a doctor and wish someone could do a better job of explaining all of this. In the end though the specialist did not care what the results were because she said they had nothing to offer – that I should just go home and hope for the best. Nice huh?
Rebecca Caudill said,
March 9, 2011 at 4:03 pm
I am so relieved to have found this site! I thought I was going crazy. I was diagnosed with the B19 virus over 7 years ago and have been suffering with recurring symptoms every Sep/Oct and Feb/Mar. Only the right side of my body is affected – red rash on cheek, swollen lymph node in neck, nerve pain from top of head to bottom of foot, and a very painful hip. I suspect the recurring episodes are damaging my right hip joint because between seasons the hip still hurts, just not as bad. I have found that anti-viral medication helps to reduce the length of the episode and the level of pain, but when the pain level is at its worst, Percocet is about the only pain reliever that reduces the pain enough for me to sleep.
I am going to see a Rheumatologist later this month (March 2011), but after reading some of the posts, I am thinking an infectious disease specialist may be more appropriate. Does anyone have any good resources in the Dayton, Ohio region?
Once again, thank you for hosting this site. I am so grateful to know that I am not imagining my experience – like I could conjure up this level of pain!
Hope for healing to all of you!
serenamuse said,
March 9, 2011 at 5:34 pm
Hi Rebecca,
I too am glad you found us. For years I felt so alone with this and one day just thought, hey, I’ll start a blog and see if anyone shows up. I then sort of forgot about it, came back one day and was surprised to find all these comments waiting for my approval. I am not happy that you are all out there, but am happy to think that perhaps we can offer some support to one another. As far as your hip goes it is my understanding that in spite of the inflammation, no real damage is being done. I’d like to know more about the antivirals. I’ve not been given those. How do they work? Anyone else have experience with these? Keep in touch Rebecca and let us know how things go.
Serena
Joey said,
March 19, 2011 at 5:40 pm
Thank you for this blog. I contracted Human Parvovirus last year at this time and did not know what the hell it was. I am 39 & I have osteoarthritis, was diagnosed when I was 12, and so am used to joint pain. I also have thyroid disease, so am used the issues associated with that. So to me, all of this extreme pain and weakness was just my body being angry at me for traveling. I had driven to Phelan in the high deserts of southern California for my sisters wedding and then back to my mothers in Upland and back again to Phelan, back to Upland and then on home to Phoenix, Arizona all in a three day time period. This kind of action usually caused me a lot of pain, but nothing like what I was experiencing. Finally, after about 2 weeks of not being able to move I went to the doctor, who could not figure out what was wrong. He could see the swelling, he understood I was in pain, but he had no idea why. Blood test were negative for RA, Lupis, a dozen other things. He sent me to the rhuematologist who was able to diagnos the parvo. They gave me steroids to bring down the swelling, which helped. then pain meds. When I finally felt better 4 months had gone by. Then I thought I had beat this. I felt great, back to my life I went. Then about 2 weeks ago my head started hurting…headache that did not go away for 4 days. Then the joint pain and muscle weakness. It was back. Turns out I will always have this awful disease, but just have the occasional flare up. WTH? Are you serious? Why didn’t anyone tell me this before?
So now what? I am doing the steroids again to ease the swelling. Then back to the rhuematologist. Then the cardiologist, because this does not help my heart any. You all have said that a strict diet will help…then I am on it. I drink lots of water normally, but will definately cut out any soda or anything with artificial sweetener. No junk food. No problem. I am not a vitamin taker, but will definately try that too. And the juicer is coming out from appliance garage. I have found that fish oil helps my joints feel a thousand times better! I take it every day. It comes in pill form and in liquid form. I have to say, the liquid form works so much better, but tastes like garbage, even with the flavors they add to hide the fish taste.
I would like to know more about the antivirals too and if anyone has had any luck with them. Anything that will help keep me from having another flare up will be helpful too. I hate this and I am not going to let it take me down. My plan is to fight back in any way I can. So again, thank you to EVERYONE and especially to Serena for starting this blog. You are so appreciated!!
Joey Maria
serenamuse said,
March 19, 2011 at 6:42 pm
I’m right there with you Joey. I need some suggestions. It is mid term of my final semester and I am struggling to get what I need to get done, keep going back to sleep. Now I am wondering if I am getting radiation as well! I know there are more desirable forms of omegas – at least not as fishy! I take ground flax in my smoothies, chia seeds, and hemp protein powder…any suggestions out there?
christina estrada said,
April 7, 2011 at 3:17 am
Im new to this forum having been recently diag w parvovirus.Wanted to know did steriods cause more pain the first day of taken them?Or could it be the virus?
serenamuse said,
April 7, 2011 at 4:07 pm
Hi Christina,
I do not have experience with steroids, but perhaps some of the other members will have some experience to share. If they are trying to bring down the inflammation I would suggest seeing a dietitian for diet suggestions, much safer than the steroids.
Good luck!
Joey said,
April 7, 2011 at 6:47 pm
Hi Christina,
The steroids were murder the first couple of days. I seriously thought I was going to swell until I exploded. My hands were so large, they looked like baseball mitts. But as the 3rd day waned I started feeling much better. The swelling went down so much, my hands almost looked normal. By the end of the week I was back to my old self.
The biggest issue with the steroids though, can lead to heart issues. So please please please take Serena’s advise and seek out the dietitian. Since I changed my diet I can see/feel a dramatic result.
Good luck to you!
Joey Maria
christina said,
April 13, 2011 at 9:53 pm
Thanks for everyones input!!!!Greatly appreciate it!!The steriods didnt help me.They caused more pain then ever while on them..DR thought that was odd since most people get relife>>Ive never been like everyone else!!!lol ….Anways waiting on the results of the dna test hla b27…Does anyone know what this could mean weither its postive or negative??How does it affect my treatment??What other meds can they try that wont make me sicker?I started on a few supplements mentioned by others seems to help a little.Any suggestions would be appreciated!!!!!Thanks a bunch!!!
Sara Smith said,
April 19, 2011 at 1:21 pm
I feel as though I’ve just stumbled into a room full of people who speak the same language I speak after years of living among foreigners. Thank you!
I picked up parvo ten years ago when I was a parent of four young kids — it was practically an epidemic at their school, but I didn’t know that until I’d spent two weeks and repeated trips to my doctor trying to figure out why I was progressively becoming crippled, one pair of joints at a time. The pain was terrible; I couldn’t lift an empty saucepan, couldn’t walk a block, pour milk, lift my arms to wash my hair. My doctor reached the conclusion that it was a “viral arthritis” the same day I heard about what was going on at school. I didn’t bother to get tested for the specific virus, but my kids all got the classic slapped cheeks rash, so I’m sure.
Ten years later, I still live with a background level of joint pain all the time, with periodic flares of much stronger pain. The pain is still always bilateral — never just one side, always both elbows, both shoulders, both hands, etc. For the first few years I also experienced a lot of fatigue, but that seems to have improved. I have always wondered if the original parvovirus was the cause of my recurring pain, but my GP (not the original one who saw me when I had the parvo) has discounted that theory. To his credit, my situation is complicated: I have a lifelong history of other joint problems (chronic dislocations because of hypermobility syndrome) and a strong family history of autoimmune issues; and other issues that turned out to be related to an unusual form of seizure were clouding the picture. So I went to a long string of specialists and had all kinds of tests. Thankfully, all of those have been negative, and the seizure disorder diagnosis and medication have taken care of the memory loss issues that were complicating the whole inquiry.
So now all I want is the best approach to pain management I can find. At 54, it matters to me to stay as mobile as I can for as long as I can, and to age as a reasonably active person. I hate having pain limit what I can do, and I hate living with that constant inner debate whether to acknowledge that I am hurting or try to conceal it. (I guess I’m lucky, compared to many of you, to be at a point in my chronic parvo where concealment is even an option.) My husband broke my heart a couple of weeks ago when he watched me get up from a chair after I’d been sitting for a long time and said “you’re so old”.
Thanks to all these posts, I’m going to adjust my diet right away and see if that helps, and check with my doctor to see if those supplements you all suggest are ok in conjunction with my other medications. I take advil sometimes when I particularly need to feel less pain, since it seems to take the edge off. For me that seems to work better than other OTC stuff. Having seen what steroids have done to my two sisters, I’m not interested in going that route. Mostly I take nothing.
For those of you closer to your original infection than I am who are struggling with exhaustion, I would say that it is possible for that part to get better even if the pain continues — it definitely did for me.
Finally: I’d love to hear whether anyone else out there shares my history of parvo infection in the context of pre-existing joint issues — I’m wondering if the parvo is more likely to become chronic in people whose joints are especially vulnerable.
serenamuse said,
April 19, 2011 at 3:44 pm
Hi Sara,
So glad you found us. It does help to know you are not alone. I really relate to your issue of not knowing if you should let people know about the illness. I have felt so afraid to be labeled by the disease. When I started feeling better and applied to graduate school I did not mention it in my interview with the chair. My first semester I did not mention it to my fellow students. Then suddenly I realized I had to – that this was my story and it was what I needed to communicate in my work. If anything rather than feeling labeled I feel my friends and faculty respect me for what I have accomplished. I also relate to feeling old. Since I have gone vegan I literally have felt I am getting younger all of the time! I am afraid I sometimes do not act my age- having too much fun, driving too fast, singing too loud, dancing in the halls – because after being in bed for so long I feel released. I hope the diet changes will help you too! I still have my bad days, today my hands are very sore, but nothing compared to before.
Cathy said,
April 21, 2011 at 9:18 pm
Sara..
wow what a perfect way to explain what I go thru… constant inner debate of acknowleging the pain or hiding it.. Like you say in the background.. with flares!!
Well I head back to the Mayo tomorrow.. armed with all sorts of Info..
Best to you.. Cathy
Joey said,
April 19, 2011 at 5:27 pm
Hi Sara
I have a history of joint pain. I was diagnosed with early onset osteo arthritis when I was 12 years old. I know pain. I am 39 now and in all the years I have lived and worked with arthritis, nothing was so bad as parvo. I thought I was going crazy at first. In the year since I acquired this virus I have had more painful joint pain than ever. It doesn’t hurt all the time, but when it does, I am incapacitated. Completely. Which makes me crazy because I am an active person with a cake decorating business, so when I am done I don’t make any money.
I have asked the rhuematologist and he agrees that people who have joint issues are more likely to have parvo as a chronic condition versus people who have no history of joint issues. He also said people with allergies are more suseptable. So if you are both, like me, then you are in trouble.
LeeLee said,
April 27, 2011 at 10:16 pm
i am so sorry to hear about your condition. i now know what pain is like.
i contracted the parvo virus from a young child at work in 2009. my diagnosis was said to be sever polyarthritis secondary to chronic parvovirus with rsd of the left hand and arm. i have the symptoms of pain, fatigue, swelling, etc. I also developed RSD, (reflex sypathetic dystrophy) in my left hand and arm. the doctors tell me it is a nerve condition. between my rheumatologist and family practitioner, they do not know how long this condition will last. they tell me it is still a mystery. all i can say is NO KIDDING. it has been over two years and i still remain with the same symptoms. i am awaiting an appt with a neuro/pain specialist for additional help. i do hope this doctor can take away the sever pain i have all over my body.
i have never had joint symptoms. i was always healthy, worked a full time job and then some. i have a husband and stepchildren. since this contracted virus, at age 37, i am not able to do any activities of daily living on my own. i require help with just about everything. i do not go outside often, as it is very hard for me to walk. my parvo level has gone down but it has left me with a crippling illness that the doctors cannot figure out. i have been tested for everything. my step-duaghter is typing this up for me as i only have use of the right hand.
i guess my question to everyone is……whats my next step? where elso can i go? i am at a loss.
for other people who have written on this site, i do hope everything does work out for you.
thank you for taking the time reading this. i do hope someone has an answer.
Cathy said,
April 28, 2011 at 12:15 am
I’m so sorry to hear of your situation.. it really is something (this Parvo) I know!! My endless energy days are few now!! I have had this 2 years now.. and can’t beleive it.. you have had it about the same…and it to has changed my life…. so your not alone!!!! My girls help with many things and it breaks my heart that I can not do the things I wish too with them???
As I just do not know what makes my problems worse, forsure???
I was just watching Dr. Oz and he was talking about Vegan/ or similar.. like Seranamuse is on… I have to wonder if making that big change could help?
Are you on meds… what are your bloodwork results.. ANA’s.. CRP.. etc???? Hang in there!!!!
Take care… Cathy
LeeLee said,
April 28, 2011 at 11:40 pm
hi cathy,
thank you so much for writing back. it is nice but also sad to know that i am not alone. oh yes..i am on meds and i dont like them. they make me so drowsy and i do not like feeling that way. you also asked about my bloodwork. my rdw’s are high and c3 serum is very high. the doctors tell me my bloodwork indicates an auto-immune disease but they just cannot figure out which one. this is the problem i am facing. i have undergone just about every bloodtest under the sun but the answer is still a mystery. i am seeing a neuro/pain management doctor tomorrow. i will let u know what he thinks.
talk to u soon…and take care…lisa
laura said,
May 1, 2011 at 8:31 pm
hi i was looking for some help really when i was 19 wks pregnant i caught parvovirus/slapped cheek this was passed onto my unborn daughter and at 23 weeks in utero she was nearly dead with hart failure and hydrops we went through a nerve wracking 16 weeks of blood transfusions scans and steroids to the baby through my stomach until she was finaly born 5 weeks early and heralded a miracle!! since then she had a bowel unblocked at a day old but more worryingly a tethered cord in her spine that has just been operated on but she is coming 2 n august and is still unable to walk and is very small still does anyone know anything about this!!! i myself have felt achey and fatigued ever since please help thanks
serenamuse said,
May 2, 2011 at 3:52 am
Wow, I don’t have any answers for you. Perhaps some of our bloggers do? I do know that after contracting Parvo I decided not get pregnant again (though we had planned on having another) because the doctors could not give me a straight answer about the safety of doing so. My heart goes out to your little girl and you. I hope you find some answers.
Lisa said,
May 4, 2011 at 9:38 pm
Hi, my name is Lisa and I am 26 years old from Boston. I have been so sick I think maybe the sickest I ever remember being in my life for almost three weeks now. I have been in and out of the emergency room and back to my doctors office numerous times. Getting out of bed is a task and everything I eat or drink I throw up so I have had to get IV fluids not to mention I am exaughsted and everything in my body hurts as well as extreme sweating. Anyway the reason for my writing is my dr told me she thinks I have parvovirus and the results will be back in a few days. I have read about this and it seems people dont het very sick and I seriously feel like I’m dying. Is this normal?
serenamuse said,
May 5, 2011 at 3:03 pm
Oh I do hope they find an answer for you! Parvo hits people differently and some are very much as seriously affected as you – especially in initial infection. At least they are doing the tests so you should get an answer one way or the other. Sometimes it feels good to be able to label something.
LeeLee said,
May 5, 2011 at 11:38 pm
i am so sorry to hear you are not well. as someone else has said, parvo hits everyone differently.
i do sympathize with you that it is a task to get out of bed. i have had parvo for over two years. it has affected my entire body.
i am still learning about this virus. many doctors have told me that it would last 2-3 weeks to a month. well, i guess they were wrong. they have labled me as chronic parvovirus.
i do hope you get an answer soon.
talk to you soon.. leelee
CIndy said,
May 6, 2011 at 10:41 pm
I would be SO grateful for some advice. I am very happy to find this blog. I would be appreciative if you would just read my story (it’s short) and tell me if it fits Parvo or if I am totally off base.
My story:
Fifths disease (parvo, right?) was going around the kids school. I woke up one day with wrist pain, then other joint pains and swollen joints, mild fever and tired. Obviously I had the virus.
Then it all went away. Phew!
But then a month later I got a slightly different symptom: The muscles on the sides of my knees are sore all the time especially after sitting. My elbows ache a little and my little finger too. But the knees are pretty bad.
That’s it. No other symptoms. I know you read a lot of this kind of stuff, but I can’t tell you how much I would appreciate a response if anyone else has specifically MUSCLE pain. It seems weird. Both knees, just one day:pain. And it’s been about 2 months now. Doctors have no clue. ALL tests came out negative.
Please give advice, support, or encouragement! THANK YOU.
serenamuse said,
May 7, 2011 at 6:41 pm
It sounds very much like parvo. People respond differently but the arthralgias seem pretty universal. I would not be surprised if very soon the fatigue hits hard. Have you been tested? Even without, knowing that fifths disease was at the school is a good sign of Parvo. Good luck!
CIndy said,
May 7, 2011 at 10:27 pm
Thank you very much for your response. It helps. I have a question:
Do I ask my doctor for a “Parvo test” (or what do I ask for?), even thought it’s been months since I first had it? I was tested for everything else, and there is no inflammation she said.
Thank you again. Cindy
Cynthia said,
June 17, 2011 at 4:35 pm
Hey there Cindy!
Cindy here too….;)
A quick bit of support- as I, too, have knee pain and very slight elbow pain- stiffness in wrists and hands too- all intermittent and short lived- going on 2 years now (41 yrs. old). You are not alone! I have been a “floor” girl my whole life….;) (sitting cross legged, etc…..)The past few days I have had some knee trouble and have just simply tried to accept, change the way I sit, do less of what bothers my joints- and…..remain positive- thanking the universe and G-d for each beautiful day I wake, the sun, friends, family, life….. big hugs- peace, love, light and healing to you!
LeeLee said,
May 8, 2011 at 9:00 am
hi cindy,
in response to your question, yes..it may be a good idea to get a parvo test done. if you had it before, you may still have it now. it may be at a lower percentage but the pain is still present.
good luck..
leelee
CIndy said,
May 9, 2011 at 4:14 pm
Thank you very much, i have just found someone nearby who specializes in this and other virus’ so I can pursue this and get a definitive answer to see if this is what is plaguing me. Good to have support. Thanks for the blog… Cindy
LeeLee said,
June 10, 2011 at 10:32 pm
i cannot seem to find a happy medium. the cold weather is horrible for my muscles and joints and the humidity is torture. today has been an awful day. i have had pain from the time i woke up at 5:00am this morning. i have been taking my pain meds as instructed by my doctor but it is just not going away.
there have been so many times i just want to pack it in but my wonderful family is there for support. when i have my really bad days, and all i do is cry, my husband tells me to look in the mirror and has me tell myself “i am strong”! “i am beautiful”! and “i can conquere anything if i try hard enough”. he is so right!!!!! although i do try, with little success but it was more then i did the day before. he is my rock!!!!
i do hope other people have a rock to lean on or to guide you when your feeling down… because there is light at the end of the tunnel even if it takes a little longer to get there….leelee
Mindy said,
June 19, 2011 at 1:46 pm
I’ve had these parvo-symtoms for months now. It really changed me and my lifestyle (and my poor family’s too). After testing me for lupus, a nurse in my Dr.’s office called me with my blood test results and told me I had lupus because of positive ANA results. Apparently she shouldn’t have done this but I went a month thinking I was dying of lupus at 31 and was going to leave my 2 young children and hubby behind. I struggled to have a positive outlook on this disease and have a good quality of life and think I got depressed in the process. Finally my Dr. let me know HE had not diagnosed me with lupus and that he thought it was anxiety and that postivie ANA doesn’t necessarily mean anything serious. Although he apologized for his nurse’s mistake..he made me feel crazy and that it was all in my head. I had told so many people that I had lupus and now had to back track. Well after this roller coaster ride I went to get a second opinion at MAYO but Rheumatologist said that lupus came back negative. He mentioned that it was probably the parvo virus (I had taken pictures of the lupus like butterfly rash on my face and my ANA was still postive). My symptoms for months had been exhaustion, brain fog/confusion, flu like feeling, fevers, joint pain, racing heart, difficulty sleeping, rash, swelling in eyes, hands, and feet, and muscle cramps in my neck. So I went home and researched parvo virus and all the medical websites say it is a MILD virus that resolves in a few weeks. Well that is not what I had and I started feeling confused about what I really did have. Then I stumbled across this blog and it all makes sense now. Thank you everyone for posting your experience because just knowing someone else shares your story is a huge comfort. I am hoping that all my symptoms go away soon…I feel better but when I get hot or in the sun the rash on my face pops out and I feel flu-like. Living in FL with an active family and trying to stay out of the sun is difficult. I am going to work on some of these diet suggestions and see what happens. I do have one question though…when you have chronic parvo and you go through flare ups are you contagious to others?
serenamuse said,
June 20, 2011 at 12:40 am
Mindy, your story is just so typical. I had the same question about contagion for years, and doctors have said no. I don’t always trust their knowledge, but I don’t know that I’ve passed it on to anyone…
Cathy said,
June 22, 2011 at 1:14 am
Hello Mindy… How are you doing???
You have elevated ANA’s, I do also with other Elevated Bloodwork…DS DNA.. + others.. many people can have elevated ANA’s!! What was the bloodwork that they did that said you had Lupus.. it takes many things to be diagnosed with Lupus! Some Dr.s are scary.. that is forsure!!!!
This has changed my life in many ways, not for the better.. 2 1/2 years for me.. many Dr.s and very few answers….!!!
It could very well leave you.. my Dr. always said within 6 months… so hopefully it will still leave you!!!
Parvo can be mild….. then like all of us… it can cause MANY problems long term …. I went to the Mayo to every specilist and the Cardioligist, didn’t hasitate to run any tests that I requested, knowing my background with Parvo… so I do beleive that they know the seriousness of Parvo???
So belive in your symptoms.. TRUST them.. we are not crazy!!!
I tryed b12 and had some bad stomach cramps/ loose stools.. so I stopped it!!!
Taking Amatriptaline.. to sleep.. groggy just started… not decided if it is good or bad?? I HATE Drugs.. I have to do something??? I spoz the Parvo has turned on Lupus or some other AutoImmune Disease???
Take Care… Cathy
Mindy said,
June 22, 2011 at 12:56 pm
The nurse made a mistake in telling me I had Lupus…(simply because of the positive ANA’s and low white blood cell count). The Dr. later apologized when he realized what she did……after a month of me and my family thinking I had a serious disease that would not go away. The good news is that I don’t have Lupus. After all that craziness, I went to Mayo. By the time I went to Mayo I had been feeling better for about 2 weeks. Before that I had been ill for 3 months. This time I brought a camera with photos of my swollen face and eyes and rash on my face to prove it wasn’t anxiety. Along with the list of all the crazy symptoms. He did not test me for parvo he just looked at my symptoms, the photos and the bloodwork that I had. He did more bloodwork. He said it was “most likely” the parvo virus. Since I am feeling better I’m not too concerned with getting specifically tested…..unless the symptoms come back. This was the scariest worst illness I have ever had and hope to never have again. I was taking fish oil and b complex vitamin and eating healthy and it did seem to help me get over it. I also would drink calming teas at bedtime if I felt like I was having a hard time falling asleep because I was so uncomfortable with pain/sick feeling.
stephanie said,
June 19, 2011 at 10:45 pm
Cindy- where did you find a doctor that specializes in Parvo–every Dr I talk to knows nothing about it–I have even had them ask me if I got it from a dog–REALLY!! I have been battling the episodes for 4 years now.. I have been having terrible back pain and got an MRi done that shows FACET ARthritis–I beleive this is from the PARVO- im only 41 yrs old. I wish you luck with your episodes to come.. ENJOY your good days and rest on the bad ones,. PEACE OUT stephanie
Rebecca Grbic said,
June 22, 2011 at 5:10 am
Im so scared after reading this. I feel there is no end but it has only been going on 4 weeks for me. I got a severe uveitis (swollen draining eyes),soar throat. then a few days later I had a fever of 103 with severe Muscle aches. I thought nothing of it until the 5th day and was found to be severely anemic. I did not have joint pain or a rash for a few day so the doctor treated me for lymes told me I had CMV because all my IGM’s were positive. Then finally got tested for PARVO when the joint pain became severe. My feet and hands were so swollen initially and that has come down but the shoulder pain and thumb pain is severe. I am so sorry for these chronic stories but i am getting this wierd feeling like I will be chronic as well and Im sad and scared and in so much pain. Motrin and Tylenol do nothing for the pain.
Rebecca
serenamuse said,
June 22, 2011 at 5:20 am
Rebecca, it is completely understandable that you should be scared when you don’t know what it happening to you and neither do the doctors. Keep this in mind though a very small percentage of people who get parvo as adults will actually end up with long term symptoms. You are in very early days yet, don’t give up hope. Do, get rest, and make sure you give your body the best fuel you can – seriously no junk food, no processed foods, no soda, avoid sugar, white flour, Do eat lots of whole plant foods – leafy dark greens, fruit, veg, whole grains, legumes, nuts, seeds. I would also avoid dairy and meat. Make every bite count. You have no idea how important food is to giving your body what it needs to fight this off. Think of it like this – what have you got to lose by eating uber healthy till this has passed? Nothing but a few pounds and you may gain a whole lot of health. Check the resource page – read Eat to Live. Keep us posted!
Rebecca J. said,
June 26, 2011 at 9:07 pm
I am so happy to find this site. I was first diagnosed with Lupus due to a positive ANA test and a very high Anti ds dna test along with anemia. After going to the rhuematologist, they retested me for Lupus along with Parvo as my school had an outbreak of Fifth’s Disease. It came back negative for Lupus and positive for Parvo. They also discovered that I had extremely high anticardiolipins which are the cause of antiphospholipid syndrome. My symptoms persisted which include lower back pain, knee pain, muscle pain in my legs, foggy memory, dizziness, fatigue, hair loss, photosensitivity, numbness in my toes, fingers, back, and forearms, very prominent livedo retiularis which gets worse under stress and in the cold, and a rash on the inside of my forearms that burns. A month ago, I suffered from a TIA which they attributed to the antiphospholipids. I was put on Lovonox shots and coumadin since APS causes blood clots.
I am finally stopping the coumadin on a trial period, but woke up today with excrutiating lower back pain. I am discouraged because I wonder if this is related to parvo or if possibly the first doctor that diagnosed Lupus was not wrong in the first place. Could the parvo have triggered lupus the way it seemed to trigger the antiphospholipid syndrome? APS can be primary and it can be associated with Lupus. I also was diagnosed with Raynaud’s Syndrome which again goes along with other auto-immune diseases.
I have been told that the anti-dna ds test is highly specific to Lupus. Would that be positive due to the parvo virus? Parvo is a single stranded virus which confuses me because the above test is a double stranded test. I don’t completely understand it all and since the APS and Raynaud’s are definite, I fear that Lupus is the culprit of my pain and not the parvo. But, on the other hand, the parvo is still showing up in my blood work although the number is decreasing. I have also heard that Lupus is a very difficult disease to diagnose as test results will vary from negative to positive based on the disease activity. I have seen so many doctors with answers, but not answers that are concrete. Does anyone have any advice or thoughts? Thanks very much for any input possible. Rebecca J.
Claire said,
June 27, 2011 at 6:39 am
I found your site as it’s only been a few days since my joint symptoms started but I’m in so much pain that I thought I’d see if my symptoms were ‘normal’. I know I must have parvovirus as my daughter and 2 friends have had it over the past 2 weeks and when I got the rash on my body without feeling too unwell I just laughed it off with friends, but now I’m not laughing any more!
I thought the aches were due to digging the garden, but over the weekend it’s got worse….aching ankles (and swollen feet), knees, hips, wrists, hands & fingers. I had to lie down for a few hours yesterday which is so unlike me, and I can sense not a lot of sympathy from my husband 😦
Should I go back to the doctor. But what can they do. I’m scared it might go on for months/years as having seen other people’s posts that seems the general way. Sorry to go on, but it seems like you might understand.
Thank you
Claire.
serenamuse said,
June 27, 2011 at 7:11 pm
Well Claire, chances are that you will improve, but listen to your body, rest, rest, rest, and give your body uber healthy food – make every bite count. I suggest whole plant foods – low fat, no sugar etc. If you push through it, you may make it worse. Look at some of the information on the resource page. Also, people don’t understand. Even after eight years my husband and daughters are trying to understand. The hardest thing is that your symptoms are constantly changing so people around you don’t know what to expect. Be tough and say I can’t do that today, I can’t drive there, can’t do that chore, can’t make dinner, just rest. All the best! Serena
Claire said,
June 28, 2011 at 7:53 pm
Thanks Serena. Went back to doctor and he has taken a blood sample to test to establish what it is…he wants to rule out Scarlett fever! I’m 99.9% sure it’s NOT that! I will rest…don’t feel like doing much else. Feels like my hands are made of thick sponges so quite tricky to pick things up. Good excuse to get out of chores -LOL!
Thanks again
Claire.
jane said,
June 28, 2011 at 2:06 am
I have fever in the evening for 2 days. it is 39.5 degree. Is there anyone who got this? Could you please tell me how to handle this?
serenamuse said,
June 28, 2011 at 3:43 am
I don’t remember really dealing with a fever. Perhaps some of the others have…
Jeepers said,
July 12, 2011 at 4:07 pm
My 4 yr old caught parvo from a kid in school and then I caught it from her. This was in March. 4 months ago! Please please please go away. I am not even working. It started with what I called a mild flu (no rash, mild fevers and aches). Once that disappeared it went straight to my head and hasn’t left. Dizzy/foggy/fatigue/trouble concentrating/focusing/headaches/longer absorption (brain takes longer to interpret things/ . I feel better some days and have ups and downs throughout the day. As I mentioned I am not working right now due to this and I barely drive places. I try to stay local. Been to all the doctors…primary, neurologist, endocrinologist, infectious diseases. The infectious diseases said that it was unlikely due to parvo since we all test for it but he would run it again and check for levels. He just called me this morning and yep..parvo is active and he is telling me this could all be related. UGH!!!! When is this gonna go away. Sitting here with makeup on and people asking what is wrong…you don’t look sick. If they only knew what was going on in my head. I want my old self back.
serenamuse said,
July 13, 2011 at 4:08 am
Oh so sorry. Unfortunately we all relate. Your story is much like most of ours and no one knows how long it will last – I’m sure the doctors have told you that. Since the virus is still active I suppose there is a chance that when it isn’t active you will recover. Everybody responds differently. One positive point is that the number of people who end up with a chronic condition is quite low. Chances are you will get better and not suffer for years. I sure hope so for your sake. In the mean time I suggest reading some of the other posts and looking at the resource page. You might find some tips that will help you cope.
All the best!
Serena
Jeepers said,
July 13, 2011 at 12:22 pm
Thank you. I have to say that I feel a little bit better than I did in March-May. I’m not bed ridden per say but far from 100%. Not sure if I really am getting better or just accepting it as a lifestyle. It does give me hope so we will see. and yes..the doctors orders..rest and let it run its course and unfortunately adults get it much worse than kids. thanks for your support. I did read through some of the posts yesterday and I will continue to investigate today. thx again
Richard said,
July 20, 2011 at 2:44 pm
Hi all.
I currently have Parvo virus (about 2 weeks)…I seem to be fighting it off quite well. The reason I want to make a comment here is because I discovered myself and my Family all had a magnesium deficiency so we replaced most un-nutritious foods with more healthy ones and we all have been much healthier since. It is hard to do but if you get your daily requirement of vitamins/minerals/proteins/amino acids every day in food your body will magically fight off any virus by itself. Doctors are never much help because they are not watching everything you eat every day so it is hard for them to say what the root cause of your problem is. Hope this helps in a very big way !!! Good health to all of you.
serenamuse said,
July 21, 2011 at 4:22 am
Richard I absolutely agree with you and wish someone had pointed me in the right direction years ago.
wanda grant-poulin said,
July 22, 2011 at 3:04 am
I am completely overwhelmed here tonight reading thru all these posts..i was diagnosed myself over 6 yrs ago and have been thru hell and back since with various diagnosings of autoimmune diseases eversince then..i have been refered to go to Boston as soon as they can see me and try and figure out what the reason for all this is..i truely since having been diagnosed with this have felt that this has stayed with me and cause dverything since then to errupt..everyone wants to treat the symptoms that r in the now but are not willing to dig further and find out what really have started them..very upsetting as im a mother of 3 and am 39 yrs old with a business to run which no less has me standin on my feet allday as im a hairdresser..im very curious to some feedback so will post in the next couple of days more of my exact symptoms and timeframes and see if any of you could help me out..i have a few good days then im down for the count..last oct i was actually on my way to wheelchair bound as my legs just didnt wanna work anymmore and they diagnosed me then with spondoloarpathy at that point after being very sick from may till nov..and the very latest was the ulnar nerapathy…from the results from a emg test and said most likely the nerves in other arm and legs r on their way as they r doin the same as the left arm started out with..i need my arms to work and i need my legs to stand with and most importantly i need to be back to ME !!! i have 3 beautiful children who when asked what did you and your mom do today and their comment is well when mom came in from work she went to bed..ughugh i hate this but i have to lay down for like an hr and a half before i can function again and go back out to work..will write back in the next few days with more exact details but just had to commnet tonight as i think i might be in the same boat here as everyone else and im glad to see that its not all in my head and im not goin crazy cause really i have been at the point where when havin tests i actually pray they find something just to beable to answer me and hopefully help me out..but all i have been gettin is neg tests or positive ones or this or that is elevated but no answer why they just pass me onto someone else and seriously what dr schedules a visit long enough to go thru over 6 yrs of different things that have happened to me??? they look at me and say wow your a great historian..thanks for reading and will write again
serenamuse said,
July 22, 2011 at 3:44 am
I am so sorry you are feeling overwhelmed. I understand. I too hoped for seven years that the right doctor/specialist would have an answer. I finally gave up on them. I do hope that in the past two years (last time I saw a doctor) they have come closer to some sort of answer, but I doubt it. I do worry about what you are saying about your legs. It sounds like you are really over doing it and not giving your body a chance to fight. You know how it goes, over do it and you end up with no option but bed. Do keep us informed. In the mean time read up on nutrition, give your body the best fuel possible to fight. Look at the books on the resource page. All the best!
Serena
Lisa in CT said,
July 27, 2011 at 6:07 pm
I found your story today while researching info on getting parvo twice. I am stunned others have gone through this and thought I’d support your cause by sharing my story too. I was a very active, healthy, energetic, happy person until one day in March of 2001.
I was 30 yrs old, married with a 5 yr old, I was at work and began feeling very ill. By the time I got home and took my temp it was over 104. I had the coldest chills in my spine and shivering with no other symptoms. One day later it was gone and within a week a strange rash came over me for about 5 days. About a month later my feet started to swell, hand and fingers too. Then my ankles and knees were swelling and arthritic. It hurt to get out of bed, I would fall at first too. I’m not one for doctors, but when you cant walk it was time for help. They did not have any answers, ran the wellness blood panel and showed I was fighting a viral infection, nothing serious. The arthritis lasted about 6-8 wks and slowly I was able to put shoes on again. I was wearing flip flops to a corporate office in business clothes during winter. As time went on I started getting migraines again, then one day a rash started on my ankle and spread up my calf about 4 or 5 months after the fever. This was red, leathery, oozing and just itched like crazy. I saw another Dr. who suggested it was an STD….married, clean lifestyle, I said no. But allowed all the testing because he insisted. Results negative, and he basically washed his hands saying dont know, here is a cream. Now the rash is showing up on my neck, back and arms. I am breaking out in hives every day and very uncomfortable. I saw a dermatologist who said that is the worst psoriasis/excema combo he every saw. I was put on steroids and it helped great, but returned just as I finished my last pill. I am exhausted all of the time, napping every moment I can and lifeless. I am on steroids for about 8 months on and off, having migraines, pain syndromes, exhaustion. I have seen 4 drs…and it has been a year now since the big fever of unkn origin. Everyone is telling me I have Epstein-Barr Syndrome, Its chronic fatigue, Fibromyalgia, and “its mind over matter”. I have to decide I want to get better is what I was often told. At my annual ob-gyn, he sees the changes in me, the scars from the rashes, etc. I just started crying in his office and telling him about my year. One second after I finish talking, he said, I bet you have Parvo B-19. Let me run some bloodwork. Sure enough, its positive. So about 16 months into symptoms, I am finally diagnosed. I honestly cannot remember how he treated it, but I think it was antibiotics and I got better.
Fast forward about two more years, its 2004 and I am developing hives again, pain in my tailbone, redness in my feet and hands, my skin has a purple tinge on my legs, toes and fingers, my mouth is burning, toes are burning yet cold to touch, pains in my hips, wrists, inside of my knees, rashes on the palms of hands and feet. I am tested for lyme which was negative. I am tested for B-12 and it is low. So I begin receiving injections and slowly some of the treatment helps, but the arthritis pains continue. I am sent to an endochrinologist and diagnosed with Auto-immune thyroid, Hashimotos, Reynauds, Psoriasis. They tell me I need to see a Rheumotologist who sends me for mega testing and said early stages of auto immune disease but my best treatment option is with a naturopath until my disease progresses. That didnt help… Basically the titers were there, positive, but undiagnosable at this point? He said its Chronic Fatigue.
So I became a vegetarian (who snuck hamburgers, LOL), obsessed about exercising, and read everything I could on pain syndromes, and thyroid diseases. Found Emu Oil for my psoriasis helped and stopped all steroid creams and treatments. I’ve managed ok but still have extremely painful episodes. I do not eat any poultry or pork, only grass fed farm raised beef from our local farms now. I am still in good shape according to the numbers on the scale, but my endurance is that of a frail person.
Now its July 2011…Three weeks ago I have a terrible stiff neck, bursitis in my left shoulder and radiating pain down my arm. I take advil and rest. 7 days ago a rash starts on my legs, next day both arms then nothing for 2 days. Fifth day it appears on my stomach and within 24 hours my back, neck, shoulder and legs are completely covered. I went to the dr yesterday and she said this is a Parvo rash. I said it cant be, I had that 10 yrs ago. She insisted its parvo “like”, no allergy, no bacterial or fungal relation. My treatment is 15 days of Prednisone starting at 50 mg.
I hope this is not rearing its ugly head again or sending me off with another round of mysteries! I have been researching today and found cases of the virus in “healthy” women having another outbreak on the CDC website.
I havent been seeing doctors about this for about 3 yrs now. I feel like I am not taken seriously, my last pcp visit besides yesterday was nov. 2009 for a physical. I am managing my pain and choose to keep everything to myself since it is such a burden. I self treat with hot/cold packs, walking when I cant exercise, and advil or aleve. Sleep alot! After reading this, I am now too going to consider seeing a specialist, 10 yrs of suffering from a “minor” virus and now it appears its back. I cant do this for another 10 years.
Thanks for reading my post. — Lisa in CT
serenamuse said,
July 27, 2011 at 11:15 pm
Lisa, from what current research is showing you never really get rid of the Parvo – it stores up in your bone marrow and does just that – rears it’s ugly head. So it sounds like you’ve done fairly decent at helping your body fight it back. As far as I know we all have flare ups. Sorry! I hope you find relief quickly and that this is a short lived episode. Keep in touch!
Serena
Lisa in CT said,
July 28, 2011 at 2:01 pm
Thanks Serena, I knew the virus never left, but I thought the rash couldnt become “live” again. (Kind of like Chicken Pox) Just this week reading everything I have found this is the probable connection to the auto-immune issues I have been dealing with for the last 6 years. None of the Drs. have indicated the relation, yet know I went through 2 yrs of this in early 2000. Pretty unfortunate considering the advanced medical world of today…but thanks! Its nice to know others out there understand. I had also forgot to mention my PCP referred me to a Hemotologist for all kinds of suspected blood disorders from the Rheum. labs also. He finally said after 1 yr of 3 mo follow ups, looks to be viral (in 2008) but of the thousands that are out there we just should monitor your blood carefully for what is to develop. Havent been back. I found great comfort here….Thank you!
And PS…the photophobia! I had no idea it was connected. The sun is my worst enemy without glasses and a hat. Taking my son to Rock Concerts with laser lights, I have to close my eyes and turn my back or instant migraines, spinning, even blacked out once. Its ridiculous and embarassing.
Advice to any out there suffering: Diet, Whole Foods (not the store), Organic when affordable, Limit all processed, chemicals and dyes. Careful on fish varieties. For Thyroid issues, limit your dairy, soy and meats with hormones and antibiotics…they wreak havoc on your body when your body is already wreaking havoc on you!
Also…when the pain is at your absolute worst, Celebrex has helped me until the episode subsides. Mine seem to come around my cycles like clock-work.
I wish all of you the best! –Lisa
Jeepers said,
July 30, 2011 at 9:12 pm
Lisa, I think the sun and heat are my worst enemies as well. I feel like I’m gonna have a panic attack. I start to get dizzy and feel like I’m gonna pass out. I caught parvo in March and I thought I was getting a little better and this week it hit me like a ton of bricks again. Back in bed and feel miserable with tons and tons of joint/muscle pain. I’m thinking this is all parvo related but am still doing a bunch of tests.
Lisa in CT said,
August 4, 2011 at 10:26 am
Best wishes to you Jeepers. I hope you are feeling better soon. I used to love summer in New England, beaches, gardening, riding bikes and hiking…now its a chore or just dedication to continuing a family life style. Please take care of yourself and know I can relate to what you are going through! Good luck with your testing.
Jeepers said,
March 7, 2012 at 12:28 am
I’m just seeing this now Lisa. I’m sorry…I didn’t know how to track replies but now i do. Thank you so much. Hope you are doing ok…
Julie said,
August 22, 2011 at 4:47 am
Serena,
Thank you for your website and the wealth of information that you have posted here. I tested positive for parvo about 2 1/2 weeks ago but have had symptoms for the past month. I am blessed to only be suffering symptoms in my hands, wrists, elbows, and shoulders. I was training for a 1/2 marathon a month ago. Not now. I’m hoping to begin some short walks, as I know exercise is beneficial and so far my lower body is unaffected.
I appreciate your info on diet. I am hoping to give my body the best chance to fight this in the early stages and make some changes to my diet immediately. My husband is supportive of the dietary changes. That is such a help, to have the support of family. I am not suffering nearly as bad as many others. I am thankful, but I feel such sympathy for all of you. We didn’t choose this illness, but instead, for some reason, we have contracted it. I have a much better understanding of what those living with chronic pain and discomfort deal with on a daily basis. It is awful to have to go from active to having to hold back or pay for it the next day. I am praying for a complete recovery and am going to take some proactive steps to help my body.
The physician’s assistant I went to to request the blood test was skeptical at first, when I mentioned Fifth Disease, as her books only talked about children. As soon as I said human parvovirus she was able to find information linking the virus to adults.
I would encourage anyone going to a doctor with suspected
symptoms to use the title “human parvovirus” and not Fifth
Disease, as it will more likely give the doctor the name
associated with adults.
My PA had never heard of it in adults in her 20 years of practice. I’m afraid there are many physicians out there that are ignorant about this illness and the seriousness of it in adults. The 20% ratio given for those that will suffer with it for months or years is disturbing. That is one in five. ugh!
I reqested that I only be tested for human parvovirus and not do RA blood work. My PA was agreeable with that, and neither of us were surprised by the results. My iGg was around 4.9 and my iGm was around 0.9. I have had difficulty finding any explanation for the numbers or the ranges for positive or negative, but the most important point was that I tested positive for a recent parvo infection. Not sure where I got it, but I was with lots of kids at a vacation Bible school the week before, so I am guessing that is where I picked it up. I’m thankful my physician’s assistant is okay with people coming into her office and telling her what they think is wrong with them via a facebook diagnosis. 🙂 My friend had the symptoms years ago, and although she was never tested, she researched online and self-diagnosed herself. She responded to my call for help on facebook, and messaged me a link. I believe she is one of the blessed majority that didn’t suffer long-term symptoms from the virus.
Also, in my online research, I came across an academic dissertation presented May 13, 2011 in Finland called:
“Human parvovirus infections during pregnancy: special
reference to child-care employees” by Anita Riipinen.
If you google the title it will bring up the webpage with the pdf file. I am not pregnant, but found the information in the first half of the report to be extremely informational on the virus itself. I hope that it will be useful information for others.
Your paintings are beautiful. So glad that you successfully completed your masters. No doubt, that brings hope to many long-term sufferers that there can be a light at the end of the tunnel.
Julie
Julie said,
August 30, 2011 at 4:21 am
Serena,
I hope you are enjoying a time of rest and refreshing after completing your MFA. I am feeling so much better this week. I didn’t take any ibuprophen today and am doing well. I had more good days than bad last week. It is good to have a positive story, isn’t it?! 2 weeks ago, on a bad morning, I couldn’t grab the bedcovers to pull them back (kicking was more productive) nor pick up a small glass of water to take my ibuprophen. I’m taking it easy, but slowly trying to take on some of my chores from the kids again.
Question: Has anyone heard of using a “rebounder” or mini trampoline as low impact exercise to stimulate the immune system and lymphatic system. I did a search the other day looking at what exercises help stimulate the lymphatic system, and came across articles on rebounders. I won’t get into details…better for others to research for themselves and see what they think. The lower end fitness trampolines (line $100 or less) can be too jarring and actually bad for the back and or neck. The better quality ones can be very low impact and just a gently bounce for 2 to 5 minutes can flush your lymphatic system. There are various models available including the Cellerciser, ReboundAir, Needak, and Jumpsport, as well as others. Amazon has a good selection to look through. I would encourage anyone interested in trying one to do some research. A jarring experience would certainly not help the joint pain!
I’d be interested in whether others have used a rebounder. I have ordered one and am eagerly awaiting it, as is my daughter! I am supposed to take it easy at first, as too much flushing and toxins and I won’t be feeling so hot the next day. I will let you know if it helps my condition. (I read about swimming here on your blog, and would love to do that, but our small town is without a pool at the moment. This seems to be the next best thing, but I’ve not seen anyone on your board or others talk about it.)
Sincerely,
Julie Benson
serenamuse said,
August 31, 2011 at 12:23 am
Julie I did use a rebounder for a while – till the straps broke…I liked it, I used it with the wii jogging. It made the jogging so much easier.
Stephanie Jones said,
September 2, 2011 at 1:40 am
Serena,
I have been following your blog since I was first diagnosed with fifth’s disease last July. I found comfort in knowing that there were others suffering the same things I was. Thank you for doing this.
I felt that it was time to share my story and to let everyone know what I have done to improve my symptoms. I caught fifth’s disease from my 5 year old son. I was experiencing terrible pain in all my joints. In the beginning my hands were suddenly so red, swollen, and sore that I couldn’t grip the steering wheel in my car. My feet, knees and ankles were the same way making it extremely difficult to walk. I was exhausted and could barely get out of bed. I was tested for Parvovirus B19 about 2 weeks into this, which can back positive. The Doctor said I should get over it within a few weeks. Unfortunately, over the following three months, the symptoms progressed. I started to have problems with my vision, I couldn’t remember words, I felt dizzy when standing and nauseus all the time. By the end of September, I had to stop working.
I found this very frustrating as previous to this, I was an active 38 year old women. I worked full time in a job I loved and was raising two active boys ages 5 and 7.
Over the next few months, the symptoms did not improve and I went to see a rheumatologist. In December the rheumatologist diagnosed me with Fibromyalgia and Chronic Fatigue Syndrome as a result of the Parvovirus. The rhematologist put me on amitytalene (sp?) which helped me to sleep. My Naturopath helped me with a variety of supplements and probiotics. I also discovered that I had a large number of food intolerances (gluten, dairy, potatos, soy etc) and modified my diet accordingly. The combination of all this allowed me to return to work part-time (two mornings) in February. By the end of March, I was working 17.5 hours and had plateaued in my recovery. I still fatigued easily and was dealing with chronic pain. The Doctor said that this was all I could handle and probably wouldn’t improve much more.
At the beginning of April, I visited my Naturopath and she suggested that I try ASEA. I bought a case and started taking it. Within two and a half weeks, I was starting to feel better. I had more energy and less pain. By the end of April, people at work were beginning to tell me that they were beginning to see glimpses of the old me. I was smiling more and feeling more energetic. When I saw my Doctor at the beginning of May, he couldn’t believe the change in me and allowed me to increase my hours at work another 3.5 hours. After two months, at the beginning of June, I was no longer limping from knee and hip pain. I still walk slowly, but the limp is gone! My mental clarity had improved and I found that I was not exhausted after work. When I saw my doctor again on June 8th, he was almost giddy at the progress I had made and wanted more information on ASEA http://www.stephaniejones.teamasea.com/. He also increased the number of hours that I can work to 24.5. I now have the energy to look after my family and to socialize; two things I didn’t think I would do again. I am not all the way there yet, but I am seeing light at the end of the tunnel and beginning to get my life back.
Serena, again thank you for starting this blog. I hope my experience helps someone else.
Stephanie Jones
serenamuse said,
September 2, 2011 at 5:02 am
Stephanie, your story is so similar to mine. I’m so glad you are finding something that helps. I look forward to finding out more about the ASEA. Thank you so much for sharing.
Serena
Jeepers said,
September 21, 2011 at 12:01 am
Hi Stephanie. I am struggling the most with mental clarity (foggy/dizzy head). Do you think the ASEA would help me?
Stephanie Jones said,
September 21, 2011 at 12:36 am
Hi Jeepers, After the first month of taking ASEA, I found that my mental clarity had improved. I have been taking it for five and a half months now and found that the brain fog has mostly lifted. I still have bad days, but even those aren’t as bad as they used to be.
alex said,
October 20, 2011 at 10:25 pm
Hi to all, sorry to hear of these troubles but so glad that they were posted to read…I too have been suffering for many years, about 6, and at first was told it was all in my head. I found out first that my fatigue and dizzy spells came from low DHEA. I also have bursitis in my shoulders from being a hairdresser for so many years. I am an active 38yr old with 2 teens. About 2yrs ago in Oct ’09 I suffered with some lower back pain that was brushed off by the doctors as just a ruptured cyst. Well, since then I just haven’t felt right and have notice low grade fevers on & off. It was nothing i could prove to drs. so I just waited. I also started having tremors about 4-5yrs ago and they increased about 6 months ago. I had recent bloodwork done and it showed low blood platelets. So another dr and more blood work. i told her about some lower back pain i started having & she ordered a CAT scan. 2- 21/2 months ago I started having lower back. i thought it was a cyst again so I ignored it until it recently became so bad the pain started to come around the right flank area and I thought I was having a Gallbladder attack. I had thought my legs had gave out in ER due to pain. Gallbladder & kidneys fine, blood fine but now I’m having trouble walking and standing and I’m running a 99-100* fever. Went to my regular dr today and she ordered an MRI. We’ll see what this brings…
alex in Norwich,CT
nancy martin said,
November 5, 2011 at 2:29 am
I contracted a simultaneous infection of both parvo and mycoplasma pneumonia about 9 years ago. I was a mess for about 1 year – severe joint pain, neuralgias, sleep difficulties, night sweats. I started taking evening of primrose oil and fish oil on the recommendation of a herbalist who said that my body needed these building blocks to repair my neurologic system. Over a period of about 6 months – my symptoms began to subside. It was only when I contracted a cold or was bitten by mosquitoes, that my symptoms reappeared – anything that signaled by immune system. The problem is – as parvo is a intracellular virus (as is mycoplasma) (it hides inside your nerve and muscle cells)- the immune system must attack your own nerve and muscle cells to kill the pathogen. Even if the pathogen is not intracellular – your immune system continues to attack your own tissues in any subsequent infection of any pathogen- sometimes for years afterwards. Every year my immune response dampened, and I no longer have any relapses. I haven’t really had any problems in about 2 years.
I don’t know if the oils were the key to my healing – or if it was coincidentally timed with a spontaneous recovery – but I believe that it helped substantially.
Leslie said,
January 18, 2013 at 8:24 pm
Spilling through old posts and saw this and just couldn’t believe it. I’ve had such awful neuropathy, muscle pain and joint pain since diagnosed with this virus… and it’s been quite a while… and then I read this. Why why why don’t doctors know this???? I’m gathering nutritional recommendations. Cutting out gluten and processed foods first and adding more supplements and vitamins. Nancy, I don’t know if you still check this site, but thanks. I needed to hear that you did get better. Two years and counting, but you gave me some hope today.
Danyel said,
November 23, 2011 at 5:40 pm
I too have tested positive with Parvo B19, but it is high only in Egg…along with other infectious disease. I currently am seeking treatment in California. Please let me know if you would like to talk.
Danyel
Vineeta said,
May 25, 2015 at 10:43 am
Danyel,
We are in CA too. What kind of treatment are you receiving?
Aly in NC said,
November 28, 2011 at 3:57 am
So glad to hear all of these stories! I now know what I was unable to find in my research… my story seems typical! I was diagnosed with PARVO two years ago, after weeks with swollen joints, a distinct “target” shaped rash on my hands and arms, and fevers on and off. Then after a few months of treatment, I still wasn’t feeling better. My doctor ran all kids of tests for Lupus, which tested positive once and negative the next two times. My antibodies were higher than they should have been after recovering from Parvo. After months of tests, my doctor and I gave up at trying to find a solution… and I seemed to feel better anyway. Now, two years later, at 26 years old, I am having regular severe joint pain again and wondering if it stems from the Parvo.
I already have immune issues because of Grave’s disease at age 17— and thyroid problems seem to be another common thread on this page. Thank you for the stories here. I’d love to hear more of others experiences with symptoms of Chronic Parvo…. I need to be informed when I see my doctor again this time.
Thank you for you stories, and best wishes for health and healing…
Julie said,
December 7, 2011 at 7:57 pm
Hi –
I was just diagnosed with parvovirus and tested positive for a marker for lupus. I also was anemic, but the follow up test for that showed that my iron, B-12, etc was normal. (???) I see that it’s been a while since someone has posted on here, but it would be nice to talk with someone who has been in the same boat!
Julie
Joey said,
December 7, 2011 at 8:13 pm
Hi Julie. How are you feeling? You will have to bare with me, my left side is not working well today. Having a flare up and it’s a nasty one. I didn’t want you to feel like you were alone out there though. 🙂
Julie said,
December 7, 2011 at 8:23 pm
Joey –
Thanks asking! Today is ok – I feel like I’m over the “bad” stuff for now…..still dealing with brain fog issues and a little shortness of breath….is that parvo related? I have an appointment at the end of December with a rheumatologist so hopefully he’ll be able to suggest some things to help – and hopefully he’ll rule out lupus!
Tam Wedgwood said,
December 8, 2011 at 10:18 am
Hi Julie,
My daughter had both brain fog and shortness of breath with chronic parvo — ultimately she was diagnosed with CFS. We believe the CFS was triggered by the parvo.
She also had all the symptoms of lupus, but she was tested for Lupus several times and (just like all the other tests! (:) that always came back negative. Parvo is known to produce symptoms that mimic lupus.
Rheumatologist was not all that helpful for us — could tell us it wasn’t arthritis or lupus but hadn’t any familiarity with Parvo, also told us to try antidepressants – NOT the answer, in my view!
I think you’d be better off seeking an infectious disease specialist. Chronic Epstein Barre infection is another virus producing similar long-term health problems to Parvo, but it’s a lot more widely known & recognised. But maybe if you could talk to someone with knowledge of Epstein Barre & similar chronic viruses, you would at least be talking to someone who knows these chronic infections do happen (for a long time our GP told us it couldn’t be the Parvo because “no virus lasts that long” – ha! ha! ha!)
Things do improve – my daughter is back in full-time school, brain fog much better, no longer breathless and this week she is pain-free and her joints are not swollen – the first time she’s been pain-free in years. We treated her CFS: mega doses of vitamins, careful diet, physical therapy, pool therapy. Good Luck!
Joey said,
December 8, 2011 at 1:11 pm
Hi again Julie…yes the brain fog is common. Sometimes I feel like my intellect has arthritis. Usually I am fine, but then I have a flare up and when it’s a bad one, then the ‘stupids’ come with it.
I agree with Tam here in that you should find a new rheumatologist, one who is familiar with Parvo and also find an infectious disease specialist. I am lucky in that I live very near a retirement city in Arizona and the rheumatologist I see is very familiar with Parvo.
The best advise I can give you is to change your diet. Eat healthier, take your fish oil, get some exercize when you are feeling better. I know it’s hard when your body doesn’t want to cooperate, but it helps. Just go for a walk. Keep limber. Eat lots of fruits and veggies. It makes a difference. Just read some of the other stories…we have tried it all. 🙂
Jeepers said,
December 8, 2011 at 4:17 pm
What happened to Serena? Is she still on here?
serenamuse said,
December 8, 2011 at 5:02 pm
Yes, I’m still here, just in the middle of teaching online art history (a huge learning curve) and Comp and Color at another college – driving way too much! I need to be able to post from my bluetooth! lol I’ve also been sick a lot this semester. I’m sure it is the stress of so many new experiences and pushing hard to not only teach but work on my own art, be mother, wife etc. I do read everything!
Jeepers said,
December 8, 2011 at 11:10 pm
Hi Serena. When I first wrote on this site it was back in July. Sadly, I am still not better. Still have the yucky head fog, light headed feeling, legs are achy, headaches and on/off muscle twitches at night. My main complaint is my head. I notice anxiety makes my head worse…same with caffeine. Weird. Does anyone else have that?
Since July I have been through so many tests. numerous MRIs, 2 spinal taps, EVP study, etc. I was put on a picc line for 6 weeks to treat suspected lymes (even though my lymes test is negative). I’ve personally thought it was parvovirus the whole time. The timing is just too coincidental. I’ve also see an MS dr consistently. I’ve recently tried steroids and it may have helped slightly. She says my symtpoms are too nonspecific for MS right now (thankfully) so she said she is willing to try IVIG! I had to get a lot of bloodwork done first so I’m hoping I can start it in the next couple of weeks. It will be a 5 consecutive day treatment. I know IVIG is something that has been brought up here and on other sites. I’m really optimistic and hopeful about it.
Has anyone else tried this route?
Cathy said,
December 9, 2011 at 2:13 am
Jeepers,
Oh boy the Brain fog is awful…. I can not multiple task to good anymore like I used, I get so mad at myself, if I don’t have a note forget it!!
On the “purpose of this blog” section there are posts about menangis.. the inflam of the brain, that so explains or could explain my Vise Grip/ achy head…? I was told that MRI/Cat scan will not see this, you have to get the Cancer scans… Pet./Spect ( I hope I,m saying them right.. again the brain fog..I can not remember things) I have the achy.. weak muscles/shortness of breath… mostly when going up steps/ inclines (strangest thing) or even bending over to but shoes on… I have done the rounds at the Mayo.. I;m healthy…but have all of this elevated bloodwook… go figure???
Forsure I have the muscle twitches..random/ all over… drives me crazy (neuropathy) I spoz.. not good???
I have the achy/twitching/Vibration that runs thru my body, do you have that??
Yes I think that stress makes things worse!!!
My Ins. will not cover IVIG.. I wish that it would.. as it was explained was that the IVIG will jump start the Immune system that is very confused….so I would jump on a chance to get IVIG!!
Please verify your INS will indeed pay.. they told me numerous times that they would then the Dr. office sent a Letter of Medical Neccessity and they will NOT cover as this is considered off label use???
Please post on the IVIG.. if you get it and how you are doing???
Good luck!!
Best to all, Cathy
serenamuse said,
December 9, 2011 at 4:35 pm
I too would like to hear more about peoples experiences with IVIG. Mine will only cover it for AIDS…
Jeepers said,
December 8, 2011 at 11:13 pm
Oh..Serena..it also sounds like you are keeping busy and feeling better. Good for you. What is the secret? Is it all in diet? People tell me that I should change my diet and I know I need to. My head is still to foggy to even drive more than a couple of miles locally.
Sarah Ford said,
December 9, 2011 at 3:29 pm
Hello, I was recently diagnosed with Parvovirus at the Mayo Clinic. I have been in extreme pain for about a year and a half. I have gone to lots of doctors (maybe a dozen). Thank you for setting this up. My joints crack/pop very loud, all of them. I also was diagnosed with SIBO (small intestinal bacteria overgrowth). The theory behind getting better was to first kill the bacteria and then strengthen my immune system. I was told most immune systems should fight off parvovirus and because my immune system is compromised by SIBO, it’s unable to. I, like you am looking for more education than sympathy. Thanks for sharing, I wish you the best.
serenamuse said,
December 9, 2011 at 4:33 pm
Hello Sarah,
I’m curious, how did they propose killing the bacteria and has it helped? I’d like to learn more about that. On a positive note, wow, the Mayo is one of the neatest buildings! I love the sculpture, light fixtures, hard wood furniture….
Serena
Shari said,
January 7, 2012 at 2:11 am
Sarah and Serena,
The best way to kill the bad bacteria is to starve it off while building up the good bacteria. Eliminating all sugar from the diet (initially, even fruit) and add probiotic rich food. I now make my own kefir from raw milk with my own kefir grains. This type of kefir is the best and most effective way to colonize the gut with the good bacteria. It works much better than yogurt and Activia, as well as the probiotic supplements.
I’m using strictly diet to help with my parvo induced pain. None of the meds worked for me. I’ve done much better on my own.
serenamuse said,
January 7, 2012 at 2:17 am
Interesting. I do know that when I start back in on sugar my hands start to get stiff and painful again. Normally, I stick to a couple packs of stevia in cocoa (with rice milk, or soy, or hemp, almond…). I don’t know what kefir is…
Serena
nicholegee said,
July 12, 2012 at 12:52 am
Sarah, did you go to other doctors/facilities before going to Mayo? Or did you go straight to Mayo? I have been to 3 doctors here in Chicago, 1 who diagnosed me with Parvo, 2 who minimized my symptoms and dismissed me. My symptoms are reoccurring and I’m debating whether or not I should go to Mayo. Do you think it was a worthwhile experience? What kinds of tests did they do? My joints also crack and pop all of the time. It’s getting out of control. I’m 24 and was healthy up until a year ago. This June, I revisited my rheumatologist who originally diagnosed me with Parvo and he mentioned a Vitamin D deficiency as the root cause of all of this. All of my tests came back negative… expect for high inflammation. He responded with ” Well, there’s nothing we can do about it.” Obviously, that answer doesn’t sit well with me. I want to get to the bottom of this. I would appreciate your opinion. I hope you’re doing well. Thanks!
Fishngurl said,
December 31, 2011 at 12:04 am
I was diagnosed about 9 years ago with an instantaneous and severe flair up in my shoulders and knees, so much that I couldn’t raise my arms or walk. The ER room sent me home w/ Vicadin, said I probably had a virus that settled in my joints (the swelling wasn’t visible yet) two days later, and my PCP knew right away what it was. We treated it with prednisone, and things went back to normal (I have been diagnosed with arthritis since I was a child) This last week all of a sudden, my joints are all hurting, fingers, elbows, knees, ankles, and my lower back. I am achy, soooo fatigued! At first I thought it was a flu bug, but as it persists, and the joints seem to become more painful and swollen, I was reminded of my escapade with Parvo….my internet search brought me here. Do you think its possible that I went 8+ years without a flare up, or that they were just minor and I wrote them off as my “normal” pain? Or am I merely grasping at straws here?
serenamuse said,
December 31, 2011 at 12:13 am
Well, it does seem odd to have gone eight years without major symptoms then all of a sudden get them again. One week is really not enough to tell though, give it a month and it if has not improved then you know it is not some run of the mill virus running through your system.
Tam Wedgwood said,
December 31, 2011 at 11:12 am
Hi Fishngurl, I think it’s possible – my daughter had several bad flareups in the months immediately after getting parvo, but then it settled down. She always had minor flares, but these were mostly in the form of swollen, stiff, aching joints, so I imagine that if you have arthritis, then it would be possible for you to be having those kind of “mini-flares” and not know that it wasn’t just your arthritis.
She probably had 7 or 8 years with just these episodes of bad joints and for the last 2 of those she seemed so much better and the joints were such a minor problem that we really thought she was finally over it — before she suddenly got a massive flare up, which made her bedridden and ended with a diagnosis of chronic fatigue….
In total, yes, she must have gone about 8 years with only joint symptoms and minor flares.
In those remission years she did often have a bit of a rash or run a fever and feel a bit like flu-ey aches when her joints swelled, but every case is different and I am not sure whether you’d even particularly think that was too unusual if you were already used to your arthritis pain. (As a parallel example, my daughter caught swine flu during her bad flare up, but didn’t know it because she was so used to aching and feeling flu-ey that she assumed it was “just” the parvo… it was only when I got the flu too that we realised she had it….
martin said,
January 7, 2012 at 8:45 am
I have seen a small glass veil, that says parvo virus live. Can a person get parvo if he was to snort some coke or meth and it had drops of. that live parvo virus? As if it was done on purpose. Also, is boils part of parvo illness? I think somebody may have or is tryen to give me parvo. PLEASE help me…….
serenamuse said,
January 7, 2012 at 5:48 pm
Martin,
You do need help, but need to go to a rehab and ask your questions there. Good luck.
Shari said,
January 7, 2012 at 6:39 pm
After reading some of your posts, Serena, I see that we’ve been managing our illness in a similar manner. I, too, found a tremendous change in my pain levels when I went vegetarian and no longer eat processed foods (for the most part). I haven’t gone completely vegan. I did for awhile but felt I needed some animal protein, so I incorporated eggs back into my diet. I have sourced them from a small farm that truly has free range chickens and does not feed them any GMO soy.
Nine years ago, I came down with this virus after being exposed to my step daughter that had Fifth’s disease. My immune system was a bit knocked out due to my recent marriage and move to a new home (not to mention dealing with an instant family with 4 kids!). As soon as this virus hit me, I became very ill, not able to keep down even water. I had a high fever and couldn’t get out of bed for 3 days. As soon as the fever broke and the nausea subsided, this virus triggered a massive inflammatory reaction. All my joints were painful and swollen. I couldn’t even make a fist or grip a door knob. Doc prescribed steroids that relieved some of the inflammation.
The first blood work came back with a high ANA level. First doc thought it was the beginning of Lupus. Second blood panel confirmed that it was parvo B19 and tested negative for others, including Lyme. I continued with severe joint pain and fatigue. Rheumatologist thought virus had triggered RA. It took a full 18 months for my body to stop actively producing antibodies to the virus (can’t remember if it was Iga or Igg). At this point, the severe joint pain subsided a bit and then it fully transfered to horrific muscle pain. New rheumie diagnosed fibromyalgia. I had never heard of it….he prescribed Vicodin and muscle relaxers. Vicodin didn’t even touch my pain.
I eventually tried Cymbalta. It initially helped with my sleep (I would wake several times during the night) and I had a little bit of pain reduction but then the drug induced horrible restless leg syndrome which then kept me from even falling asleep. Stopped it at 8 weeks.
When I changed my diet 5 years ago, I experienced a pain reduction of about 80%. I still have muscle pain but it’s no longer that horrible burning, zapping pain that it was before. As long as I take care of myself, the fatigue monster is kept at bay.
My attention was brought to this site after someone posted on an old topic in a forum for chronic fatigue regarding this parvo B19 virus. There’s not much out there for those of us who have been permanently affected by this incidious virus. The 3 doctors that I went to had almost NO info about the small percentage of people who have these extreme reactions to the virus. They all kept saying, “Well, it’s very rare for someone to have any lasting effects from this virus.”
Most of the meds they throw at us barely relieve the symptoms and can do more harm to us in the long run. I’d rather do the holistic approach until there is truly a viable CURE on the horizon.
serenamuse said,
January 8, 2012 at 4:20 am
I don’t know how I missed your post. Sorry. I never considered that it might have been the Cymbalta causing the restless leg syndrome. I had it so bad I would be up at night, on the cold floor, doing yoga stretches. If I stretched till it hurt, it was better than the RLS. When I quit the cymbalta and changed my diet – around the same time- the RLS went away. I’ve not had it in three years. I am so happy that someone else is benefiting from the diet change. I wish doctors would prescribe veggies and whole grains instead of drugs! Like you, I still struggle, especially when I am stressed and driving too much. But it is manageable now. Best of luck!
Serena
Al said,
January 8, 2012 at 3:09 am
Does anyone with parvovirus have breast implants? I am having severe pains in my chest almost a year after being diagnosed with parvovirus and am wondering if the virus could be attacking the implants.
serenamuse said,
January 8, 2012 at 4:15 am
Sorry, I don’t have experience with that, but perhaps someone else will write in…I do know though that I get tight feelings in my chest, painful at times. When I work out I often get short of breath and light headed – seem to be chest related – so may not be the implants themselves. They are however foreign objects. I have a hard time with fillings. When I have my teeth worked on, I have sensitivity for months – even for simple fillings.
Jeepers said,
January 12, 2012 at 12:22 am
Does anyone on here have sensitivities to medicine since having parvovirus. For example, I have a sinus infection now and when I take the antibiotic (which I never had a problem with pre-parvo), I’ll get heart palpitations, sweats, bad brain fog/dizziness etc.
Teri said,
January 16, 2012 at 2:30 pm
Doxycycline. It’s what my infectious disease doctor prescribed me for my Parvo. I had tried several medicines that did nothing. I was in so much pain for several months. I would crawl to the bathroom because it hurt too much to walk on my feet. There was no way I could have lived that much pain forever. When I got on doxycycline, my pain cleared in about 2 weeks. That was a couple of years ago. Once in a while, my feet will hurt when I first get up, but it goes away after I walk around a little. I hope everyone that has this illness finds relief like I did. God bless.
serenamuse said,
January 16, 2012 at 4:55 pm
Doxycycline is what they prescribe for acne. Is it for inflammation? I was on it once and it made me so nauseous for the entire 30 day course that I really couldn’t stand to be on it again. I’m sure glad it helped you!
j said,
January 16, 2012 at 9:09 pm
Recommendation for an dr experienced in the tx of Parvo in the Washington DC area?
Just had initial test done and waiting on results. My story – history of chronic epstein bar and bells palsy. Long term pattern of painful facial rash flare ups, chronic fatigue, sun sensitivity, hair loss, rosacea and now a few near fainting episodes. Been tested for lupus and other autioimmune disorders with nothing obvious turning up.
I’m a 28 year old female.
Feeling frustrated at decreased energy, time forced off work, overall malaise still unresolved, etc.
Thanks! Good luck everyone.
j said,
January 16, 2012 at 9:12 pm
Oh, also I have no joint pain so I’m not sure rheumatology is the right person. Maybe infectious disease? Right now derm is trying to manage the case – and he’s excellent but I feel like I should get more of a team together…
Thanks again,
J
Barbara A said,
January 20, 2012 at 1:50 am
Dr. Young at NIH (national institute of health), washington, DC they run a large research program his nurses name is Barbara Weinstein. Good Luck!!!
Lynn M said,
January 25, 2012 at 12:25 am
I sure hope someone on here can answer my questions…I went to my PCP a few weeks back to be checked out for exhaustion and achy joints, she did blood work to check for Epstein Barr, Lyme and a few others….when I went back for a follow up she recommended I see a rheumatologist, (sp)…I had Epstein Barr Virus aka Mono back in 2001 so I thought maybe, just maybe it returned or possible the tick bites I got in the summer I had contracted Lyme Disease…the blood test results showed high levels for parvovirus IgG and it noted it for the attention of the Dr….. what is classed as high? mine was 4.6 when the norm is 0.9-1.1…..I am at a loss for words and so confused at what exactly I have, why I have it and what to expect….can any one help me?????
serenamuse said,
January 25, 2012 at 1:36 am
Well, it is hard to say what to expect. Hopefully you are recently infected and it will clear up in a matter of weeks or months. That is what to hope for. A small percentage of adults who contract the virus end up with chronic symptoms – much like Chronic Fatigue Syndrome. Most doctors still know very little about the virus, but that is starting to change. There is no cure at this point, so they tend to just treat the symptoms with various drugs. There is evidence that IVIG treatment works but it is very difficult to get the treatment in the US unless you have a lot of money or AIDS. Your best bet is to listen to your body, take time off, rest, change your diet to whole foods, no sugar, no processed foods, no dairy, no meat. That is what has made the difference for me. In my search for a specialist the infectious disease doctor knew the most about Parvo B19, but was still no able to offer more than drugs to combat some of the symptoms, none worked long term though and had some nasty side effects (weight gain, restless leg syndrome, head aches etc.). You can find links to information on the resource page. I hope this will be a short term issue for you!
Jeepers said,
February 8, 2012 at 12:31 am
Hi all. I just completed 5 days of ivig. It ended last wed and I had some side effects following. I’ll keep you posted.
Cathy said,
February 17, 2012 at 11:22 pm
Jeepers…… I would love to hear how you are feeling???? And what side effects that you had!!
So reading back in the posts.. your MS Dr. was able to get you IVIG… wow good for you.. I wonder what your bloodwork showed up as..IGG’s IGMS etc, to authorize the IVIG… it is not something that the Dr.s seem to do quickly that is forsure!!
Hope things are improving!! Cathy
Jeepers said,
March 7, 2012 at 12:25 am
Hi Cathy…I finally replied today about IVIG (below). Didn’t cure my head one bit but some minor stuff did get better. When they first sent me for an MRI I had brain lesions which led me to the MS dr. She has suspected acute demylination all along and has said I’m too nonspecific for MS (thank goodness). I’ve repeatedly today my drs that I was completely normal before I contracted parvo. She ran a parvo PCR in Dec which showed a parvo infection so her and my ID opted to give IVIG a whirl. I’d be willing to try it again but it is so expensive and hard to get approved as you know.
I rerecently requested my bloodwork so I’ll give you #s when I get them. Let me know if you have specific questions.
Leslie said,
January 22, 2013 at 2:52 pm
Jeepers… Hello. Reading through old posts gathering every bit of info possible. You said your doctors suspected “acute demylination.” I’m wondering… how did that manifest itself in your systems. I, too, keep telling my doctors I was completely normal and healthy until parvo virus because they seem unsure of the “clinical significance” of my many health problems, even though my parvo dna is positive. Just wondering how you’re doing today and whether the ivig resulted in any improvement, temporary or long term.
Thanks so much for any reply!
Jane said,
February 22, 2012 at 10:40 pm
Was curious to see if there is any correlation to memory loss after having Parvo B19–I mean long term memory loss. I was diagnosed in the late 80’s (I was in my late 30’s) and, thankfully, after reading these posts, my symptoms went away after about 9 months. However, I do have memory loss since the 80’s that doesn’t seem to have progressed too much. However, now that I’m in my 60’s, one wonders about Alzheimer’s. I suspect it’s from the initial virus but was wondering if anyone else out there had the virus 15+ and continue to have memory loss issues. I remember having shocking things happening to me–like my brain was being fried–driving in the car and suddenly not knowing where I was going or even who I was–those lasted only minutes but were very scary. I’ve never had a recurrence of the worst symptoms. Mine started out with sleeping a lot, and then my fingers started doing the Renaud phenomena, and then the swelling and pain–very intense pain! I do not recall headaches. Since then whenever my fingers start turning colors, I immediately try to get lots of sleep to ward off any recurrence and so far so good. It was such a relief to know what one has though. At first I was diagnosed with fibromyalgia due to the hot spots, etc., and then a blood test revealed the antigens of Parvo B19 after my internist told me there had been a break out in Minneapolis about the same time my initial symptoms appeared (60 miles away). I was so relieved to know I didn’t have arthritis and that it didn’t mean I was predisposed to getting arthritis either. Felt so good to be able to raise my arms in the air with no pain. However, in reading blogs on here, hot tub baths were what felt so good to me–made the pain less. After reading these blogs, I hope never to have a recurrence! Will watch my diet if it should happen again. Again, anyone out there have the virus a long time ago and continue to have memory loss issues?
nicholegee said,
July 12, 2012 at 12:43 am
Jane, I have experienced difficulty with my memory as well. I am 24 and I have difficulty retaining information. I need to write everything down, otherwise it goes in one ear and out the other. When I feel really bad, due to what I think is reoccurring Parvo, I notice that my words become slurred and I have a hard time comprehending things in conversations. These patterns never existed before I was diagnosed with Parvo. I was diagnosed a year ago and I was doing well after 4 months of extreme pain. Recently, in April, my symptoms began again (lesser force this time). I’m not sure if my response helps you at all, but I’ve learned any information you can get will help.
Brook said,
March 2, 2012 at 2:20 am
Hi, I was just wondering if you have heard of small children having lasting effects from parvo? My 2 year old has had numerous issues since July of 2011…fevers, joint pain, extreme fatigue. She tested positive for mono back in September. She was retested in January and it came back negative then. The only thing that shows up in her blood is a high SED rate. She has not been tested for parvo that I know of. The drs she has seen are saying they think it is JRA. Her symptoms come and go, and I worry every day that she is going to have a flare up. Parvo just recently made it’s way through our household, and I’m not sure when it started. I remember my 5 year old having very red cheeks sometime back in December and then my 4 year old developed the “slapped cheeks” in early February, as well as my 2 year old. I was recently diagnosed with it myself. My symptoms began at the first of January with a rash that lasted two days and itching that I thought I would go crazy from. Then came the horrible joint pain and swelling that only went down from prednisone. I have had swelling, terrible joint pain, low grade fevers, headaches, chest pains and alot of fatigue since then. I’m praying that my symptoms will end soon. Our family has undergone major changes in our diet since our 2 year old daughter’s issues began, and we try to eat organic with very limited sugar intake. Ever since my symptoms began, I’ve felt horrible thinking that a two year old could feel the same way for as long as she has. Is it possible that she has carried this virus since July, and if so, does anyone have any experience or advise on how to treat it for a young toddler?
serenamuse said,
March 2, 2012 at 4:51 am
Brook,
We have had several mothers posting about their children in the past couple of years. Hopefully they will see your post and write in. There is no cure, but it is still early enough to hope that this will not be chronic. I do know that many wrote about diet changes helping. It sounds like you are doing that. Have you cut out dairy? I’d give that a try for sure. I am not a doctor, just speaking from experience. Let’s see if anyone can offer some suggestions…
Tam Wedgwood said,
March 2, 2012 at 9:31 am
It is definitely possible. My daughters both caught parvo when they were little. At the time one was 6 and ahalf, the younger one about 18 months. The younger recovered. The elder has been ill (on & off) ever since. She had recurring illness for about 4 years after the initial infection & missed alot of school. Then it seemed to go into remission. When she was 15 it flared up worse than ever & she was extremely ill – bedridden. She then got diagnosed with CFS. We read “From Fatigued to Fantastic” (see resource list) & followed the dietary suggestions there. It works! She also had physical therapy & pool therapy for the joint pain & she takes glucosomine for the joints. She is now 18 & living a “normal” life so long as she remembers to pace herself & take her vitamins.
Rhiannon said,
March 29, 2012 at 4:04 am
Hi, I was diagnosed with parvo in Dec of 2011. I still have achy joints and now I am exhausted-I cna’t survive without a 2-3 hour nap everyday. I will be seeing a specialist soon, but in the meantime, I’m worried that I might be contagious. I just flared up with a rash today. I’m a school teacher and work with two teachers who are pregnant. I don’t want to be one of those who spreads the disease. Does anyone know if a rash is an indicator of being contagious?
body aches and chills no fever said,
March 30, 2012 at 7:24 am
Wow, wonderful weblog format! How long have you ever been running a blog for? you make running a blog look easy. The full glance of your site is wonderful, as well as the content!
serenamuse said,
March 30, 2012 at 4:02 pm
I started the blog a couple of years ago, but really it is all the people who contribute who keep it alive. 🙂
Billie Hensiek said,
April 20, 2012 at 12:45 pm
Hi guys, I’m back. I just wanted to share some things that helped me. I am ALMOST back to where I was before I got sick. A rhematologist told me that a body in motion, stays in motion and a body at rest, stays at rest. He said “Get out and walk, no matter how badly it hurts, the first step is the hardest.” So, I listened. I started walking with my neighbor walking behind my wheelchair for a short distance, then moving up to my walker, then my cane, eventually the pain lessened, and the distance increased. It really helped. Another thing that has helped is to know my limits. Don’t let other people tell you what you SHOULD be doing. If you can’t do it, then you can’t do it, and don’t feel guilty for not living up to THEIR expectations. The only one you have to answer to is yourself. Anyway, I decided to try natural cures since none of the docs seemed to know what was wrong or help me feel better for that matter. Rather than get to the heart of the matter, they just threw pills at me in the hopes that whatever it was, they would find the cure and be my hero. NOT! I had to become proactive with my care. I want to tell you that the books I am listing below, I’ve had docs tell me that they don’t work, that they can be dangerous, ect. Take the necessary precautions like I did and like the book tells you to do and you will be fine. As far as them not working, I’m living proof that they do! If you read my statement above, you’ll see the long way I’ve come. Docs don’t want you to switch to the natural stuff because then they won’t have a patient anymore, namely YOU! I am listing these books in order of helpful importance with the most helpful starting at #1.
#1 DMSO Nature’s healer by Dr. Morton Walker
ISBN: 978-0-89529-548-4
#2 Olive leaf extract by Dr. Morton Walker
ISBN: 1-57566-226-4
#3 Grapefruit seed extract by Allan Sachs D.C., C.C.N.
ISBN: 0-940795-17-5
#4 Herbal antibiotics by Stephen Harrod Buhner
ISBN: 1-58017-148-6
#5 Nature’s antiseptic Tea Tree Oil and Grapefruit seed extract
ISBN-13: 978-087983714-3/ISBN-10: 087983714-4
I hope these books help you the way they have helped me. Good luck, many blessings, and God-speed to your recovery.
serenamuse said,
May 1, 2012 at 2:59 am
This is excellent news! I am so glad that you have found things that work for you and thank you so much for sharing with us.
Jeepers said,
April 23, 2012 at 5:54 pm
Hi Billie. Thx so much for this information. Did you have any head symptoms? I have a foggy/lightheaded feeling all the time? Did anything in particular help with that? Thx
Over this already! said,
April 30, 2012 at 11:31 pm
I was recently diagnosed with Parvo/Fifth disease after being sick for about 5 months. Mostly pain in my hands, wrists and some in my feet. I have fever and rash as well. It was a relief to finally have an answer, but now I would like to know what to do to rid myself of this sooner than later! I was advised to try colloidal silver, licorice root & oregano oil.
I am willing to try just about anything at this point because I have had it!
Anyone have experience with any of these?
serenamuse said,
May 1, 2012 at 3:03 am
Well, five months is early days in the parvo cycle. At this point I’d say your best bet is to make sure you get lots of rest, listen to your body and do not let anything enter your mouth that isn’t nutrient rich. For me that meant going nearly raw vegan for six months. I am vegan now, but eat more cooked foods. I cut out all sugar, carbonated drinks, packaged, processed foods and instead focused on lots and lots of leafy greens. It is the only thing that has kept me stable, given me a life back. The doctors did not have any answers – just drugs to throw at various symptoms, which came with a host of their own side effects, which were often worse than the parvo. Read some of the other posts. There are some great suggestions there. The book that made the most sense to me is one by Dr. Joel Fhurman – Eat to Live. Best of luck!
over this already! said,
May 1, 2012 at 2:05 pm
I rarely eat anything processed. I follow a pretty healthy diet eating mostly fish and vegetables. I eat very little sugar, never drink soda. Have not had that in years. I have always followed a diet like this that is why I am looking for any supplements that I may add to an already healthy eating plan to help rid me of this. 5 months may be “early days” of the parvo cycle, but it has been long enough for me! I have had enough and plan to do anything and everything I can to be done with it.
Joey said,
May 1, 2012 at 2:28 pm
I use Oregano Oil. Tastes aweful and you smell like pizza, but worth it if you have any kind of infection…your body can’t stand the stuff and so any toxins you have will run screaming. Once you have detoxed, then stop taking it. After detox is when you want to start a vegetarian diet. You will feel so much better after the first month. And if you are not someone who usually exercizes, you may want to consider walking. Try to keep your body in motion.
Stay strong and don’t let this nasty thing win!
Sara said,
May 5, 2012 at 12:20 pm
After reading everyone’s posts I have had a similar experience. It all started with a bad headache for 3 days and extreme fatigue a few days later I came down with a non itchy rash from neck to feet. I had such achy joints especially my wrists and my hand were falling asleep. Thought for sure I had carpal tunnel. I also had something on my next they classified as vascular. Looked like a bug bit but wasn’t. So I had some blood work done and it showed my WBC were very low, was also tested for limes and any other tick born diseases. They gave me a cortisone shot that put my Heart into tachycardia and the insomnia and night sweets were terrible. Thought I hit menopause at 33. It was all a bad reaction to the cortisone shot which I would NEVER get again. Feeling terrible with my heart racing went back in and mentioned to my doctor that my 3 kids had fifths so be tested my for that and what do you know, I was positive for that and that is what started everything. It’s been 3 weeks now since the rash and my joints are achy yet, often dizzy and tire easily. I have 3 little children and they need their momma feeling better than this, I sure hope this is not life long. 😦 hopeful but scared.
Jennifer said,
May 19, 2012 at 10:40 pm
Hi there, I had fifths along with 2 of my boys in march 2012. They had a fever & rash and recovered in 2 days. I am still suffering almost 3 months later. I had a rash on my arms on day 1, legs & belly day 2 followed by numbness in my hands when I laid down to sleep (this is weird and miserable I thought), day 3 complete agony burning from the inside of my wrists & hands but they were totally numb and swellling followed by my feet. MRIs, nerve, tests, various nerve drugs, water pills, pain killers and boat loads of aleve I am still suffering with numbness in my middle, index finger & thumbs on both hands plus numbness on my fingertips. I still can’t zip a zipper, tie shoes or open a peanut butter jar and am completely frustrated. Reading all of the comments on your life saving blogs has helped. My pcp thought I was annoying when I insisted it was fifths causing this and begrudgingly took a blood test that proved high levels of recent infectio . Although he is still skeptical that fifths is he cause for the hand numbness, the hand specialist thinks its carpel tunnel although the nerve test was negative and the cortisone shot in one hand didn’t do anything. I am realizing that I am exhausted everyday to which I NEED a nap, i am also having difficulty swallowing and can feel that my thyroid is quite enlarged. I am completely overwhelmed by what’s happening and the list of doctors that I need to visit to figure out what’s going on is growing…and quite difficult to get to with 4 young boys to care for. Im ready for this fifths to be over. Thanks for letting me share!
serenamuse said,
May 19, 2012 at 10:57 pm
Hi Jennifer,
My initial infection lasted a little more than three months. I hope this will soon be the end for you. It was a year later that it all started up again. So even if you do start to feel better, listen to you body, eat well, get rest, avoid (ha ha I know) very stressful situations (like moving across the country).
Best,
Serena
wehlis said,
June 24, 2012 at 5:26 am
I’m thankful to find this site. I think I have been dealing with chronic Parvo B19 since around April of 2011. It all started with crazy itching on the palms of my hands and the soles of my feet. After that, I experienced the joint pain in my hands and hips. I also have a weird symptom where my ring finger and pinky finger will often snapped closed in the morning when I wake up. I attribute this to inflammation in my elbow at the ulnar nerve. Early on, I experience vertigo while rolling over in bed. That ended after a couple of weeks. I have a dull sensation in my back right under my rib cage for the last year. My joint pain continued and moved around my body. From my hands to my hips to my ankles. I was stuttering when speaking for a few weeks. All of my blood work (including scans for all kinds of auto-immune disease) came back completely clean, and I was never tested for Parvo. Around January of this year, my neck began hurting really badly. Couldn’t turn my head left to right, and it really hurts when I just simply touch it. I started seeing a chiropractor in hopes that this would help. The accompanying massage did seem to help the intense tension in my shoulders and neck. I finally talked with a friend who was dealing with similar issues, and she was diagnosed with Parvo B19. I came home and and started researching the symptoms, and it seems like it has to be what is going on with me. I went back to the doctor and requested a test for Parvo B19. My tests came back negative for IgM (0.21) and high positive for IgG (6.78) I asked the doctor if based on these results if there was any risk in getting pregnant, and she said no, as long as the IgM number is negative, it should be fine. I hope she is right. I’m currently 4 weeks pregnant. I haven’t been able to find any information on the IgG number to see the significance in the number itself. Other than it shows that I have had the disease some point in the past. My doctor’s recommendation to me was to take motrin 3-4 times a day as needed (which I won’t do b/c I am pregnant). In the last couple of weeks, the pain is still bad in my neck, and it seems to be spreading into my chest. I feel like my heart is racing and beating really hard, while skipping beats. I’ve also felt like it is difficult to take breaths from time to time, and when I do take them they feel wheezy. I saw a naturopath doctor this week, and based on all of the comments here, I’m hoping that a clean diet will really improve my symptoms. I’m getting to the point where I feel like it is a matter of life or death. Now that I’m pregnant I have to be especially careful with what I put into my body, so I’m hopeful that the clean diet will work. I just wanted to share my experience here, in the hope that someone may have additional insight or may benefit from seeing all of my symptoms.
Blessings.
Wendi
serenamuse said,
June 24, 2012 at 5:29 am
Wendi,
I really hope you will see a noticeable difference with the diet changes. I wish you the best of luck with the pregnancy – and all that comes after!
debbie lopez said,
June 28, 2012 at 5:49 pm
I jus got bac a bunch of blood test results. Everything came out neg. Except porvovisus b19 now what 😦
Nichole said,
July 12, 2012 at 12:26 am
Debbie, your test came back negative? Did your doctor mention anything about inflammation? I had another bad episode recently and was able to get blood drawn on the same day i was feeling bad – the doctor had mentioned something about high inflammation levels. But once again, I got the “Well, there’s nothing we can do” talk. Just wondering what your doctor said…
dizzydanaw said,
July 1, 2012 at 12:20 am
I tested positive for parvo virus B 19 one month ago. Low grade fever, fatigue, dizziness, light-headedness, rash (like a sunburn at first, and now reappears in the lace pattern), swelling (particularly in my hands, arms and feet), joint pain, severe headaches, numbness and strange sensation in left side of my face, and even partial jaw dislocation. The left side of my body is more affected than the right, so I go for an MRI Monday. Praise the Lord, my awesome doc tested for parvo as soon as I said my hands hurt, so we were not running down every bunny trail figuring out the cause!
I’m taking great vitamins and Aleve for the joint pain. I keep thinking I need to take something to naturally flush this inflammation from my body. Suggestions? I believe the headaches, at least, might be caused by the inflammation in my joints on the left side of my neck. All headaches have been on the left side, or have at least originated there.
I have made some tiny progress over the past week, and was able to get out of that dang recliner a bit! I am now left with joint pain, easily fatigued, frequent headaches, and swelling esp. on the left side.
I am learning to be thankful for every well moment, as well as every ill moment. All are precious and have their purpose! I have all of you in my prayers! I’m trying not to imagine years of this, as so many of you have endured, but will focus on today, and what I will do with this day. I am home educating my 5 children left at home, and also have a married daughter who has a beautiful and amazing 4 month old daughter of her own! Today I was privileged to be able to hold my granddaughter in my arms while walking through the house.
Cindy said,
July 21, 2012 at 4:36 pm
Hi there, I’m sorry you suffer so much from this virus. I’m not sure where to start as my story is long. In September 2010 my husband got a body rash that was mainly on his torso. It was soo itchy. It appeared after mowing lawns so we assummed it was some sort of reaction. We were trying to get pregnant at the time. That month after a year of trying I finally got pregnant! I was over the moon. I was driving home grime the city one afternoon and my hands ached holding the steering wheel. It continued for a long time. I also was feeling really unwell. I thought I had the mumps cos my neck was so swollen. I hurt all over and couldn’t even manage to walk a few steps without fainting. I slept for 2 weeks and then my husband had to fly out as part of his job. At that stage I had an almost 5 year old at home with me. I couldn’t even look after him properly. I had to get someone to pick up my daughter and drop her at school. I had these symptoms very badly for atleast 6 weeks. I had started getting small bleeds. I was worried for my baby. I was in the shower one morning and found a body rash that wasn’t itchy. I went to the doctor and told him about the rash and the bleeds. He said it could be parvovirus or any other virus. I had no idea what he was talking about. He said there was nothing he could treat me with. If he had said slap face I would have known what he was talking about. My doc said he thought a scan should be done but as I was about a week away from my 12 week scan I could wait. I waited the week. When I had the scan the bub was sucking its thumb and moving a bit. But was upside down and not wriggling much. They did the neck measurement and I had the blood test for down syndrome. I was in love! A few days later I got a call from the doc to come straight in. I went in and I was told I was at high risk for trisomy 21 and 18 and it is very rare to have high risk for both. They wanted me to get a test done where they get a sample from the baby to see if it had these trisomies. I insisted the ultrasound be re done as I refused to have the test until they re did the ultrasound. The night b 4 my son fell I’ll and had to be rushed to hospital. He had the rash too by then and was very itchy but not the reason for the hospital emerg. I was up all night and my scan was booked for the morning. My husband stayed with my son and my sister went with me to the ultrasound. They started the scan. Baby was now 14 weeks. I saw bubs body there looking so cute with his arms and legs crossed. I asked if the heart was faster or slower than 140 beats and the guy said that’s just it…. There is no heart beat. :(( I was shattered. Livid! And broken into a million pieces! I had to go back to the hospital to tell my husband. My son was admitted by then. We were 200 km from home and had to be brave for our boy. The hospital didnt know what the rash on my sons body was and didn’t seem to care! The pregnancy had not miscarried after a week of the baby dying. They had to do a d and c on Christmas eve. I was offered genetic testing. By then a doctor had suggested that hpv may have caused a rash. So they also tested for that too. The baby tests came back that it was a little boy with no abnormalities genetically. But had tested pos for hpv 😦 the poor little angel died of heart failed. Now and then I get a raised red rash on one of my arms. My body is always swollen and I’m always tired. I get sick all the time and I was wondering if it was caused by the parvovirus. After reading your page I feel it is very possible as well as causing this really bad lower back pain. I have since had another baby who I’m struggling to carry because of my lower back pain.
serenamuse said,
July 21, 2012 at 5:09 pm
Oh what a heart breaking story. I’m so sorry this happened. Did they test you for Parvo?
amor aquino said,
July 25, 2012 at 5:21 pm
try asea,,it might help.
Susan said,
August 14, 2012 at 4:34 am
Hi,
I’m going on 16 years with ParvoB19(my kids brought it home from school), though these last few years the “bouts” of joint pain are farther apart. I honestly can’t remember the last time I had a bout of joint paint, maybe a year ago? In the beginning it was chronic, but as years went by they seemed farther apart. I’d almost forget I had a bizarre condition (that most doctors didn’t even believe)….then the last few days I’ve been waking up in the middle of the night everytime I turn over (achy hips). Then this morning the full on body aches, first thought “am I sick? Oh wait, my joints….” so now with the Internet I go searching again for more answers or maybe validation. No internet available for answers 16 years ago. Felt pretty alone, the Mirandamission was somewhat helpfull but that eventually fell apart. So it’s helpful to see there’s others struggling and sharing their experiences.
serenamuse said,
August 14, 2012 at 4:56 am
Susan,
Yes the Mirandamission was the first only site I could find for quite some time. I am so glad it was out there. It was one of the reasons I decided to start this site. I was just tired of being alone and knew there must be others! I’m sorry you are experiencing this again.
jessica said,
August 17, 2012 at 2:46 pm
HI, i actually had an IVIG treatment. i was diagnosed with Parvo in February after they thought i had had a reaction to some meds i was taking for a respitory infection. Turns out it was a rash due to parvo. My counts were so high in mid april that i was given the IVIG. Me being in the military it wasn’t so hard for me to get it and being my care provider has a family member who was going through it was the only reason she knew what it was and what possible treatments were. She refered me to infectious desiases where i got the treatment. I was really good and thought i had gotten ride of it until exatly a year later when it flared. I got the symptoms again and the horrible joint pains are on and off. Not as bad ajs before but they are still there alone with everything else. My counts are low and they said the infection is mild right now so only thing i can do is take pain killers to manage the pains.
serenamuse said,
August 17, 2012 at 5:13 pm
Jessica,
I’m so glad that you are working with doctors that actually understand your condition! Your story (aside from IVIG) sounds similar to mine – with the one year later flare up. Perhaps you would like to tell the rest of us where you are getting your care? I’m sure there are others that would love to know. Good luck!
Brandon Lynch said,
August 20, 2012 at 5:33 am
wow god bless everyone on hear dealing with this. i had knoe idea about this virus tell last thursday me and my 4 year old doughter have been diagnosed with human parvo also so far my little girl just has the rash and itches her real bad they gave her hydrocortizon 2.5 % seams to help her and myself she runs and plays all day without problems i hope it stays that way as for me i have rashes and today headaces and im so tired i also hope that passes. thank you everyone for the education on this we had to see two drs before on knew what it was the first one said chicken pocks…after reading all the stories i wish it was good luck to all god bless ill come back with more info also if i get some.
serenamuse said,
August 20, 2012 at 5:35 am
I sure hope this is all short lived for you two!
April said,
April 11, 2015 at 1:37 pm
Hey Serena, do you still get the rash
Kelly said,
August 28, 2012 at 2:53 am
Please help me I’ve just been diagnosed with this and the joint pain is dibilitating. I’m taking vicodin and it does nothing ice packs nothing please help I can’t take this pain
Tara Applegate said,
August 29, 2013 at 12:18 am
Kelly
I am right there now
Can’t find anyone to listen to me
Pain fatigue joint pain feet and hands
Night sweats
Tara4676@gmail.com
Henry R said,
February 22, 2018 at 12:33 pm
I am suffering with this Parvo B19. Really taking ages to shift it.
Nights are full of shivers then wake up soaked in my own sweat.
I have found some relief from the muscle and joint aches, with the help of paracetamol+codeine. Works well, but you have to give yourself a rest after the 3rd day of taking it as it can cause constipation.
I am also drinking a concentrated elderberry juice (diluted), as I am lead to believe it is a good anti-viral.
Jennifer said,
August 28, 2012 at 11:45 am
Hello, I’ve was diagnosed in march and other than pain killers or aleve doctors told me to wait out the virus. After 3 weeks of dibilatating pain in my hands and feet I was left with total numbness in my hands. Had a series of blood tests to rule out everything from primary care and an MRI from a orthropedipic doctor I was told I had Carole tunnel. After a nerve test which showed no nerve damage – I was told I could have carpel tunnel surgery which may or may not work. At wits end I went to a chiropractor who also treats with acupuncture. After one session of adjustment, laser therapy & acupuncture I could feel the numbness fading. He also suggested standard process while food supplements immuolex, cataplex b & andrographis. After 1 month the numbness is gone, my energy level is up and I feel better. The chiropractor told me that he has treated parvovirus b19 in the early onset successfully. If only I had known!
Lynn M said,
August 29, 2012 at 2:30 am
You have me wondering, my fiance is complaining of issues with his right hand and wrist, the hand surgeon says the nerve test shows no signs of nerve damage and a very, very slight carpel tunnel, the Dr, the pain management Dr and the PT have no clue as to whats going on….I was diagnosed with it a year or so ago…..might be worth checking into
Tamara said,
September 23, 2012 at 2:21 am
Hello my name is Tamara , I’m 42 … I got parvo last Christmas …. It was the worst Christmas ever … I was at work it was a normal day I started feeling really sore like I worked out an over did it . My elbows , arms ,legs knees hurt .. The next morning I went to the ER I told them my whole body hurt . They ran several test came back told me I had the first stage of arthritis.. Went home still hurting . The next morning I wokeup about 2:00 am hurting so bad I was screaming . Couldn’t stand for my body to touch anything .. I was swollen all over . My hands were so swollen I couldn’t get my rings off . I was looking for a knife to cut my fingers off it hurt so bad . I couldn’t even stand on my two feet or hold a cup in my hands .. My husband took me to the ER me screaming and crying the whole way . We got to the hospital the doctor seen j was there the day before and saw they ran test sk didn’t bother with me and let me lay there to 6:00 am to the next shift change .. I starte feeling really funny . Light headed, dizzy like I was drunk . And the pain was unreal .i started to throwup and couldnt stol i was running a fever couldn’t hold my head up it hurt so bad . My husband finally had enough and was scared started yelling for help .. The doctor that just came on .. She came running into the room an said omg I was so swollen I had so much fluid building up it was starting to make it har for me to breath she said I know what’s wrong she ran a test and came back an sai she was right I had parvo b19 and the fluid was building up around my heart and it could kill me put me in IVs and started shooting me up with stairoids when I left the hospital I state in bed for two weeks hurt so bad didn’t want to move and so tiered … Had to take stairoids for 13 weeks .. It’s been a year now I hurt every day like I’m sore from working out and haven’t done anything .. The doctors tol me to stay very active it would help with the soreness .. If anyone knows something I could take for the soreness or pain please let me know ..my hips and shoulder and knees hurt the most .. I hope I don’t have to deal with this the rest of my life . I feel for anyone who has this there’s no pain like it …
Jennifer said,
September 23, 2012 at 11:00 am
Hi Tamara, i was diagnosed with fifths in march – after seeing my primary care, orthopedic specialist, MRIs, blood tests, hand specialists – they all left me with take some aleve – nightmare. Finally went to a chiropractor who not only was the most familiar with parvovirus b19 but was able to make me better!!! It’s been 3 months of regular visits for adjustments, laser therapy & some acupuncture but my hands, wrists and ankles are no longer numb and I can function! My energy level is still low and working on it. He also had me take some whole food supplements by standard process: immuplex & andrographis which are not cheap but I do believe helped the process. Feel better!
Joey said,
September 23, 2012 at 3:12 pm
Hi Tamara…I’m so sorry you had to go through all of that. Most of us have a horror story for the beginning too. The best thing you can do for yourself is to change your diet. No prepackaged foods, no fast foods. Very little dairy, lots of fruits and veggies. And please be careful with the steroids and the pain meds. I am not a pill person, one 3 month Rx of 800mg Ibuprophen lasted me a little over a year, yet I now have liver disfunction because of the parvo meds. Try a more natural approach if you can and try to get outside and walk. Try to keep your spirits up. Eventually the pain will lesson and be livable and then it will just be to occasional flare up to deal with. Hang in there honey. 🙂
Marga Ratcliff said,
September 28, 2012 at 5:51 am
I came down with Parvo in May which I got from my granddaughter. One of the lucky ones that its chronic! I was wondering if anyone has had any problems getting the flu shot? Also if working out with weights helps. I’ve figured out for me that water jogging is the best exercise.
serenamuse said,
September 28, 2012 at 4:42 pm
Marga,
My doctor told me that I should avoid the flu shots. She said to make sure my family has them, but that over the years her experience has been that patients who suffer chronic fatigue type illnesses often have adverse reactions to them. I have been working with weights the past six months and I do feel that they help with muscle pain and generally I am stronger and fatigue less easily. I still have bad days, but they are fewer…
Joey said,
November 2, 2012 at 7:13 pm
I also have a vitamin D deficiency. Dr gave me a suppliment for that, taken once a week for the last 2 months. I am not feeling better though. Also, because of all of the meds I have taken over the past few years to fight the pain and swelling, I now have liver issues. The meds are damaging my liver enough that there has been talk of dialysis in my future. Scary stuff. But not taking the pain meds and the steroids for the swelling is even scarier as I look like the Stay Puff marshmallow guy when I have a flare up…and as you all know the pain is almost unbearable. So what out those of you that are taking meds for this…and tell your dr everything, regardless of how small it seems.
linda said,
November 3, 2012 at 11:56 pm
I have been affected by parvo for almost six years. I have near constant pain in my legs. Other than ibeprofin, what works for you? I think coffee has worked in the past.
All he best,
linda
Lori S. said,
November 14, 2012 at 6:08 pm
I just got diagnosed with having the Parvo.. my question is should I be asking for anything additional other than the blood test to see if I will have it for a long period of time? I see above some further tests, just wondering what I need to ask! I as well self diagnosed myself.. after having a 3 week headache and severe joint pain that left me in bed most days, I was told by DR after bloodwork came back fine, that I was going to have a Brain MRI as he highly suspected MS. Well, after my daughter (fortunately now) came down with fifth disease, I started googling it, and came up with Parvo! My doctor was very relunctant to even order the bloodwork for it, but after he did, he called this morning to say I have it, and he will cancel MRI! Now after reading the above posts, I am on week 5 and still have bad joint pain, a little less tired but wondering when this will end and what other tests should I be asking for ??
serenamuse said,
November 14, 2012 at 6:12 pm
Unfortunately no test (as far as I know) is going to predict how your body is going to fight it off. Most likely after three months you should see improvement. If you don’t then really it is hard to say what will happen. This virus does not really follow rules. I felt better after three months, then a year later it hit me all over again and I’ve never been the same. So, if you do improve, still be cautious and take care of yourself. Listen to your body, eat whole, natural foods.
Jennifer said,
November 14, 2012 at 6:59 pm
Hi my parvo – also self diagnosed and took much persistence to get a blood test to confirm – lasted about 6 months. It was so terrible that I couldn’t use my hands. My joints were terrible, my fingers were numb. I jad mris, saw numerous doctors and they wanted me to have carpel tunnel surgery. Finally, I visited a wellness chiropractor. After 1 week of adjustments, acupuncture and whole food supplements immuplex & andrographis – I was 50% better. I kept up treatment & supplements and it’s gone. It’s a systemic virus so the chiro recommends continuing supplements to ward off another flare up especially in fall & spring. I wish you the best it just takes patience, finding the right care and listening to your body.
serenamuse said,
November 14, 2012 at 8:42 pm
Jennifer,
What you say is right on. I think the key is that it is so difficult to find a doctor that understand, or will try to understand the ramifications of this disease. I moved last June and have still not found one. I did sit my trainer down today and try to explain to her that I am having a fall flare up and that she can’t expect me to increase and build like a normal person, that I am going to back slide and I just need her to help me keep up strength, not lose too much weight (I tend not to eat enough). It is so important to make that mind shift from that of trying to find the right doctor to fix you, to that of I know my body better than anyone, I need to take action. You can do that through nutrition, massage, chiropractor, personal trainer. I have not tried acupuncture. My insurance covers it…maybe it is time.
Ashleigh Richter said,
November 18, 2012 at 6:43 am
Hi, how are you feeling now? Did you try the IVIG?
My 4yr old son contracted Parvivirus B19 from nursery school and was very ill with it. I spent the night before he came out in the rash with him in his bed as he’s been vomiting and also had a sore throat…and ended up contracting it! That was 3 months ago!
I have painful joints and my body turns redder as the day wears on, especially if it’s a busy one! The doctor did a Parvovirus blood test a month after I caught it and said I didn’t have it ?!? I know I have it! I might have been out of the detectable window period. I need help as soon as possible as I’m due to have a Hiatus hernia repair in 2 weeks. I tried Colloidal silver. Any suggestions?
Thank you!
Teri said,
December 21, 2012 at 9:16 pm
I wasn’t sure where to post a message, but I am so glad I found this blog. (My story is very much like everyone’s here. I tested positive for Parvo B19 in July of 2011 after being the sickest I’ve ever been. My (then) doctor tested me for everything imaginable and I finally figured it out and MADE them test me for Parvo. After several weeks I began to feel better and thought that the worst was past. Wrong! My nightmare had just begun! I have had something wrong with me ever since. Just when I get through one thing, another happens. In the last year and a half I’ve had a polyp in my stomach, had my gallbladder removed, developed a severe wheat intolerance that made me extremely ill, had pelvic surgery for polyps, fibroids and endometriosis and am having vocal cord surgery in February to remove a polyp on my vocal cord. (Three major surgeries and more scopes than I care to recall.) I already had hypothyroidism and Hashimotos and that has been up and down since the Parvo as well. Just a few weeks ago I had my first cold virus since the Parvo. It was a typical cold. And then, just like when I had Parvo, I developed horrible joint and muscle pain. (I’ve had some off and on since the Parvo, but more just stiffness.) The joint pain is the worst in my elbows, knees and wrists (but have it everywhere) and the muscle pain and tenderness is so bad, especially in my neck and shoulders. It is causing unbearable headaches and even jaw pain. I saw my doctor a few days ago armed with a timeline of my illnesses (all since Parvo) and my current symptoms. I did not have to convince him that this is somehow all related. I am waiting for lab results now. He retested me for Parvo (I never had it retested!), every autoimmune thing possible and more. I am quite nervous and am so tired of being in pain and/or having something wrong with me. I just turned 42, have two young children and was always healthy until this horrible disease. I’ve been reading through old posts and comments, but any advice or suggestions would be very appreciated. I just can’t believe how many people are affected by this long term. :o( Thank you!
Teri said,
December 21, 2012 at 9:18 pm
That should be a SAD face!!
Karlisa said,
January 4, 2013 at 9:02 am
I dont no whats going on any more they told me fibromyalgia cfs and lupus but right now i having a problem with my eyes they are real puff and peeling under the eyes and it hurt real bad what does that mean
serenamuse said,
January 4, 2013 at 5:52 pm
I’m sorry I don’t know. It sounds like a reaction to medications.
Sofia said,
January 22, 2013 at 3:03 pm
Hi! I am not sure if you have any comments like mine above but I did not have the energy to go through all comments above. My suggestion to you is to try biomagnetism. Its a way to use magnets to get rid of virus and bacterias etc in the body. Check this page to read more and try if you want to http://www.biomagnetismusa.com. Good luck!!
serenamuse said,
January 22, 2013 at 5:12 pm
I did get some relief using a Nikkon mattress but it only lasted maybe a month or so then the pain was back to normal.
Leslie said,
February 6, 2013 at 12:35 pm
Hi, Serena… just “muddling” through my day again two years into parvo and wondered iif you could offer some hope. No pressure, though:) In your long experience with this virus, was there a point at which at eventually sensed you were turning the corner and found yourself again? I know now that this is going to take some time, maybe years. I realize from reading your posts that you still have symptoms, but, again, wondered if there was a point when you began to have more good days than bad? Thanks… and I hope today is a “good” day!
Sofia said,
January 22, 2013 at 10:45 pm
Hi! I have not heard about a Nikkon mattress but only about a therapist using magnets as a treat to get rid of bacterias and viruses. 1-3 times and then it should be gone. I live in Sweden so maybe this only exists there?
Sally said,
January 29, 2013 at 2:46 am
Have you found anyone to do ivig yet? I’ve only had it 7 months. Can’t take much more. What has helped? To further complicate things I contracted West Nile virus at the same time.
suzieqjones said,
February 7, 2013 at 2:42 am
I’ve had parvo b19 since 1995, and now I only occasionally get what I call “bouts” of joint pain maybe lasting a few weeks. But they seem farther apart these days, and I’ve found exercise really helps me through the pain (since not much else does). I’ve recently lost weight and now taken on yoga and feel pretty good these days. That’s not to say I’m not a bit stuff in the morning or still have a few old injuries (war wounds from old ski, roller blading and just plain clutziness) that occasionally plague me. But for 51, the yoga has really helped me feel stronger not only in body but mind. Just when I totally forget this disease it decides to remind me it’s here I guess forever, but I seem to be able to tolerate it better these days. 🙂
serenamuse said,
February 7, 2013 at 3:32 am
I am much the same Suzie. I exercise, really focus on healthy eating. I do though get bouts. I have one right now and I know it came on because I am trying to go in too many directions. The hands start getting stiff and sore, fatigue sets in…I don’t think it will ever really go away…
Andrew said,
February 14, 2013 at 8:12 pm
I am pleased to find your blog and the info from the past several years. I’d like to suggest adding dates to the My Story segment. I’m guessing that the waning October reference is from 2012, but dates throughout the story would help separate history from current updates. Thanks. I got my first B19 “sky high” test and result in Jan.’13, but I’ll save my story for another time.
serenamuse said,
February 14, 2013 at 9:58 pm
Oh, on my end of things there are dates for each post…hm. I’ll look into that.
Andrew said,
February 15, 2013 at 1:39 am
My request (add actual dates) is only about the My Story description of your journey. That way references like… dealing with the virus for the last 6 years…might instead say since Summer 2006. There is a reference to daughter bringing the infection home six years ago, too where a date would make the story a living document. Sorry I described poorly. How’s recent history?
marlene said,
February 15, 2013 at 1:57 am
Has anyone ever used a drug called LDN? This seems to be one that may work.
serenamuse said,
February 15, 2013 at 2:46 am
I’m not familiar with it. Perhaps some of the others are?
Andrew said,
February 17, 2013 at 10:11 pm
Wikipedia has a short article on low-dose naltrexone and anti-inflammatory effects. It mentions an interest in evaluating its use with MS, Crohn’s disease, fibromyalgia, and autism. It appears that its efficacy is not well documented.
Andrew said,
February 17, 2013 at 10:59 pm
I first tested for PV B-19 in Jan 2013. It was the only positive result in a viral infection screen which also looked at CMV, Ep-Barr, Herpes Virus 6, and Lyme Disease. I began a course of anti-viral medication with Famciclovir (Famvir) 500mg 3 x a day for a minimum of 6 months treatment.
Famvir appears to be the latest installment of novel A-V products which began with Aciclovir (Acyclovir), then evolved to Valacicclovir chemical form (Valtrex) due to higher bio-availability. The improvement with Famvir is a reported higher inner-cellular concentration of activated compound of penciclovir.
Barb A said,
February 15, 2013 at 3:00 pm
Marlene, what is the full day of LDN? When I first got parvo I was started on planqueil (anti-viral), steroids.
Andrew said,
February 17, 2013 at 11:51 pm
Marlene,
I note your interest in IV-IG in your My Story intro. That treatment caught my eye in the few medical journal articles I was able to find.
When my doc first mentioned this condition is treatable, I asked if this was the IV-IG treatment I’d read about. He said, oh no, I recommend starting with Famvir 500mg 3 X a day with a commitment to a minimum 6 months of treatment.
He reported IV-IG therapy is used only with life threatening acute infection requiring hospitalization. While my B-19 antibody levels were called “sky-high” and “among the highest levels he’d ever seen”, acute infection appears to show levels more than 10x what I’d seen. He suggested those ICU patients face partial, multiple organ failure and perhaps coma.
While I sometimes feel like I am going to die with this level of fatigue and body aches, it seems that “acute” infection is an entirely different category from what we experience.
That said, I’d have no problem accepting IV-IG therapy if it might end this nightmare over a period of days and weeks instead of months and years. That would be a wonderful gift for any one of us. Best wishes and thanks for facilitating our discussions.
Leslie said,
February 18, 2013 at 12:24 am
Andrew… I’m interested in your doctor’s opinions regarding “acute” parvo and his recommendation of Famvir. I guess the word “acute” depends on which side of an exam table you sit on:) I sympathize with your symptoms… they’re familiar and so debilitating… and do wish you the best as you dig in to fight this. Please, when you’re up to it, an update on your progress using this rx would be appreciated. It may guide some of us in approaching our own doctors. In all the research I’ve come across, nothing but IVIG has been recommended, and insurance companyy approval is next to impossible.
Andrew said,
February 18, 2013 at 1:23 am
I’m a 54 y.o. male and have been increasingly sick for a long time, perhaps beginning 15 years ago. I saw a new musculo-skeletal medicine specialist starting in Dec ’12. The first lab results identified PV B-19 antibodies in Jan ’13. This is all very new.
I have been using Famciclovir for only one month now. I’ll keep the group up to date with the value of that therapy. I have nothing to report yet.
I have other medical issues so I’m working on several elements. I also have widespread pain in my lower back, across my upper thighs and upper buttocks, and thighs just above my knees. Imaging studies have shown that I have a 30% compression fracture in lumbar 4 and a stress fracture in my left sacrum.
I’m due for a vertebroplasty (injection of bone cement into L-4) in a couple of weeks. Many patients get substantial pain relief from that procedure.
I’m hoping to get some healing for the spine and sacrum and then be better able to identify the symptoms and pain specifically from PV.
When I ask about overall diagnosis, my doc keeps saying…I’m not quite ready to call this fibromyalgia. I don’t have any strong feelings about any particular diagnosis.
That said, I’ve struggled with increasing fatigue, generalized aches all over, and longer recovery time from physical activity throughout the last 15 years. My docs have repeatedly said I’m a picture of good health, excellent blood test results, and suffering only from arthritis typical for my age.
I now know my skeletal problems are serious, and the previously unheard-of PV B-19 antibody test shows “sky-high” results. Thus it is very difficult for me to identify exactly how parvovirus has affected me. Like many, I’m just hoping to make some substantial progress in resolving my variety of symptoms.
Andrew said,
February 19, 2013 at 11:13 pm
Dear Serena,
I keep re-reading the My Story intro and learning more. I notice you received confirmation of the Parvo infection relatively quickly. How much time passed before your MD determined you qualified for the diagnosis of Chronic Fatigue Syndrome? Thank you for sharing the story of your journey with us.
Andrew
Jeepers said,
February 20, 2013 at 3:23 pm
For all you parvo sufferers out there that were effected neurologically, I’m going in for a spinal tap next week and my doctor will be testing me for parvo b19 in my spinal fluid. It will confirm what I’ve thought all along. My blood levels were very high (pcr) dec 2011 and blood drawn in oct 2012 showed still parvo but not as high. She couldn’t believe it was still in my system. I’ll keep you all posted!
Leslie said,
May 23, 2013 at 4:25 pm
Hi, Jeepers… FINALLY I created a yahoo account and email so I could correspond with you (and others) in a more private way than my family’s email. I’ve read your many posts with particular interest as I seem to have had this virus affect me neurologically, too. You last wrote in February so maybe you’re not hanging out here lately, but how did you make out with your spinal tap? Did they actually look for the virus in your CSF? When you say your blood levels were very high, what were they? My DNA copy level seems to jump around… 4000 down to 600 at one point, but most consistently around 2000 with an IgG of 6.9. None of the doctors I’ve seen have seen parvo affect anyone like me. I’d like to correspond with you about a few things if you have the desire and time. My email is: clpie50@yahoo.com
Thanks so much!
Andrew said,
March 9, 2013 at 6:58 am
Dear Serena and others,
I stumbled on this article citing AMAZING success with use of an NSAID. Wouldn’t that be too good to be true! I suspect I’ll contact some friends who retired to one of the countries where this is available. Best wishes to all, Andrew
PS: no impact to report after 2 months of Famciclovir therapy.
I’ll try to link in the original article and the Wikipedia article. Cut, paste, and consider…
http://www.hindawi.com/crim/medicine/2012/703281/
http://en.wikipedia.org/wiki/Loxoprofen
Julie Benson said,
March 9, 2013 at 7:58 pm
The study cites two patients. We can pray that it inspires further studies on a larger number. If loxoprofen were legalized in the US, it would certainly be worth trying, as it sounds like the potential side affects are similar to other NSAIDs. If one were traveling to one of the countries where it is available, it would certainly be worth looking into.
A question needing to be asked, though, is how effective would it be in treating the symptoms of someone that is suffering the long-term effects of parvo? Once it morphs from the initial infection into the various manifestations of long-term infection, would it still be effective?
When I was first infected and during the flareups that followed, ibuprophen was the most effective in treating the inflammation and resulting pain. The good news is I’ve been nearly symptom free for about 9 months, with only occasional hand stiffness in the mornings when I’m tired or fighting a bug. I credit the alleviation of my symptoms to prayer, a change in diet, nondenatured whey protein powder, and other supplements (in that order 🙂 ).
I believe it is vital that adults, and even children, that are infected with this virus, be given the opportunity for a fast and aggressive treatment of the virus and symptoms before it results in other conditions (like the autoimmune disorders listed in the paper). If you have recently been infected with this virus, go on the offensive. You CAN control what you eat – make sure the majority of what passes your lips is nutrient dense, there are supplements that can help that have been discussed here and on the Miranda board, and it is in your best interest to reduce as much stress in your life as possible until you are feeling better. Exercise is important to help the flow of lymph and removal of toxins from the body. Rebounding on a small trampoline is a quick way to do this and doesn’t require a lot of effort. These things have helped me.
It is always encouraging to hear that there is a possible drug to kick this virus in the hiney, but until then, it is not hopeless. Don’t give in to the helplessness that can come from a debilitating illness. You are not without hope. We live in a fallen world that includes illness and disease, but we also have tools to help us in the fight against those. I pray that those who are suffering today from the pain and discomforts of this virus will find some hope to keep fighting it.
Leslie said,
March 10, 2013 at 1:51 am
Thank for your inspiring words and advice… we really need to encourage and educate each other. Blessings for the day!
Barb A said,
March 9, 2013 at 10:24 pm
Do we have anyone (medical profesional/studies, saying that parvo virus is “chronic”? Believe me I know it is…..
Andrew said,
March 25, 2013 at 8:36 pm
Dear Barb A and others,
Your question intrigued me. I started collecting article via Google to address that question.
It appears that the word PERSISTENT is more commonly used instead of Chronic. What’s that mean and why?
I got a clue why in one article. It appears that after the first notable infection in adults, then one has this resident, viral, trouble maker as a squatter in the body forever. Some articles list the variety of body tissues where it resides…blood, brain tissue, bone marrow, synovial fluid, and others depending on the host, other health issues and the symptoms.
Sometimes the infection flares up to cause real problems, but remission follows sometimes to provide a respite. I don’t know if viral load measures rise to correspond to flares.
It appears that once infection afflicts one with chronic, daily symptoms long term, then the infection has facilitated a true chronic problem such as chronic fatigue syndrome or rheumatoid arthritis or fibromyalgia or anemia or others?
There are many articles suggesting a CAUSAL not CASUAL relationship between PV B19 and CFS (fatigue).
British articles often report standard IV treatment and unquestionable success in treatment. I haven’t seen much info on follow-up long term or viral load before and after.
Those articles on IV treatment in Britain and Canada make me long for my own IV treatment and a termination of PV B19 problems.
The search label I’ve found most useful in Google is as follows:
persistent parvovirus b19 infection. Give it a try. Or check out…
chronic fatigue syndrome and parvovirus b19
I’m still working my way through info I’ve collected. I’m looking for the best article for overall symptom descriptions and the best article to describe the meaning of PERSISTENT.
Any thoughts, Barb A or others? Thanks for the focusing question.
Andrew said,
March 31, 2013 at 6:01 am
Here are persistent stories I’ve reviewed:
http://jid.oxfordjournals.org/content/195/9/1345.full
http://www.ncbi.nlm.nih.gov/pubmed/1439481?dopt=Abstract
http://www.biomedcentral.com/1471-2334/10/246/abstract#
http://www.ncbi.nlm.nih.gov/pubmed/12367647?dopt=Abstract
These may not open here, so copy to your own search engine.
Comments? Answer the question for now?
tutu said,
October 5, 2013 at 10:45 pm
Hi I was diagnosed with parvo b 19 six years ago. I still have long bouts of fatigue, and other new symptoms. My doctor has ran tests and can not figure why I still have on going symtoms. I will see a neurologist next week who is going to test me for ms.
Chelsea said,
March 13, 2013 at 4:04 pm
I had my first “episode” in July 2012. I was moving to a city 3 hours away and had appointment to view an apartment one afternoon. My boyfriend and I made the drive up, viewed the apartment, and decided to go downtown and get some lunch. On the drive into the city I started getting really nauseous and had trouble thinking clearly. We parked the car and had to walk several blocks to the restaurant. I couldn’t breathe right and my legs suddenly weighed 1,000 pounds each. I felt like there is no way I can walk. We stopped several times for me to rest but it didn’t help. I thought I would feel better if I ate, I did not, and my boyfriend ended up leaving me at the restaurant to go get the car and take me 3 hours back home. I slept the entire day.
The following day I took a shower and came out with a rash on my trunk and back. I was able to get in to see my doctor, she had no idea what the rash was from and attributed it to my IBS.
My symptoms continued now with diarrhea, nausea, vomiting, fever, rash and frequent weak “episodes” as described above. I had been diagnosed with IBS for a few years but always with chronic constipation. Diarrhea and vomiting were very new to me.
I am 26 years old, I had a full CBC in June because of my new digestive symptoms (I hadn’t yet had an “episode”) which came back iron-deficient anemic.
Since this summer, I have seen 3 GI doctors, an allergist, 3 different primaries, and a naturopath.
I have been tested for mono, thyroid function, and lyme multiple times. I was even tested for food allergies, which I have none. I go to sleep at 7:30 every night because I literally can’t keep my eyes open any longer and drinking alcohol seems to make symptoms worse so I rarely drink even a glass of wine.
I still have a rash, mostly on my arms and face now. I also have sores on my feet resembling “chilbains” (raynaud’s)
After going to my primary care physician last week and insisting on more blood tests (this time she did mono, thyroid, and parvo) I came back positive for a recent parvovirus b19 infection. I have no idea what this means or how I could have this virus for so long. I know have to see a rheumatogloist in 2 weeks for a consultation because my primary has no idea how this virus could have caused symptoms for so long.
Sandra said,
April 12, 2013 at 2:13 am
I haven’t looked at all the comments, but has anyone had chronic/long-term arthritis and other inflammatory/auto-immune issues from Parvo? I was diagnosed with it in 2002, 4-5 weeks after the acute stage. My symptoms came on suddenly, but were a very atypical presentation. My small joints were never affected at all, but my knees, hips, SI, upper back, and neck were. I had no fever and no rash. Finally, when I couldn’t take it anymore, I went to the ER and they immediately did an EEG because my heart rate was through the roof (from the pain), and gave me two big shots of morphine (which didn’t help, but just helped me relax through it a little). I ended up being admitted and hooked up to a morphine pump. The next day, my knees swelled up with fluid and a rash appeared – but only on my feet. Another day or two later, they still had no clue what was wrong and I was still in severe pain. Huge amounts of fluid were aspirated from my knees. Finally on the 4th day, I begged them for muscle relaxers because it felt like everything was cramping up, but the 5th day, I was able to finally get out of bed and use the restroom on my own and was released. I always attributed it to the muscle relaxers. My doctor called me weeks later to tell me that one of the tests had come back positive for B19 (apparently that’s how long it took to run the test). I was able to function, but my mobility was seriously restricted. I couldn’t even kneel and had trouble sitting/standing from the hip/SI pain.
Since then, I’ve generally recovered, but have suffered from chronic problems in the same joints that the virus initially affected. All of them are arthritic, and have been since my early 30’s. My knees continue to swell up periodically – most recently I had one aspirated twice in 2 weeks with over 55cc’s removed each time.
The frustrating part is that my rheumatologists can’t find *anything* wrong with me. Every lab, every culture, every single test comes back within normal ranges. My record for blood draws is 13 vials at one time. And, as usual, EVERYTHING was completely normal. As Dr. House frequently said, “It’s NOT Lupus!”
I also have other autoimmune issues that have developed since then – hypothyroidism, erosive oral lichen planus, mild IBD, and probably CFS (though I’ve never been officially diagnosed).
Has anyone heard of B19 causing these kinds of long-term chronic inflammatory problems??
Tam Wedgwood said,
April 13, 2013 at 8:24 am
Yes – my daughter has chronic “arthralgia” in her knees, hips, hands etc with swelling & joint pain, also often the joints feel hot or she gets a “crawling”/itchy sensation before they start to swell. She also has diagnosed CFS and mild IBD. All tests with rheumatology always come back in normal range despite often visible swelling etc. Doctors usually insist it can’t be parvo & test her for Lupus, which i tell them will be negative because she’s been tested for it before… but they test anyway, and sure enough, Lupus comes back negative & that’s where the doctors leave you: “it’s not Lupus”
Andrew said,
April 14, 2013 at 3:09 pm
Tam,
You may find this 2004 article useful, especially the section on Arthropathy (arthralgia?).
http://jmm.sgmjournals.org/content/53/6/459.full
Tam Wedgwood said,
April 14, 2013 at 3:22 pm
Thank you!
Should have mentioned that 2 other children in my daughter’s school developed arthritis-type symptoms after Parvo virus. One girl developed a recurring illness with painful joints & was eventually diagnosed with Reynaud’s phenomenon. A boy developed a severe problem with his hip and knee joints which flared up irregularly, causing him to lose use of his legs during the flare ups though he could walk normally between bouts. I don’t know if he is still having problems today, but my daughter & the other girl both are & it has been about 12 years since they were infected.
kmainmiami said,
May 19, 2013 at 4:01 am
Hi-
I have not officially been diagnosed yet but my primary and the rheumatologist she sent me to both think that my symptoms point to parvo. Now looking back and reading through past posts, I’m beginning to think they are correct. I’ve had a leftover cough and chest pain following a flu like virus back in Feb. that never left. Weeks ago, I noticed my feet and palms were itching but I assumed it was just due to dry skin. A week ago today, things got really bad when I started experiencing pretty bad pains in my knees followed by swelling and pains in my hands and fingers. My knees got so bad I could barely walk or stand up. It was like I had aged 20 years in 24 hours. I am 55 by the way- fairly active, overweight but I walk 45 minutes 4 -5 days a week and am on the road for work quite a lot so while I’m not an athlete, I am by not really totally sedentary. The pain made it difficult for me to even get up out of a chair much less drive. My hands swelled up to the point that I could barely recognize my fingers and I could not close my fists. The tops of my feet swelled up as did my elbows. By time I got to my primary care doctor yesterday, the joints in my fingers were turning purple. The rheumatlogist agreed with my primary that it looks like parvo said it could be a few other things and took about 12 vials of blood and gave me a px for prednisone which I hate taking but I know is the only thing that will work quickly to take the swelling down.
I am also aware that this is an especially stressful time in my life, My job is in crisis and my personal situation is not exactly all that joyful at the moment) so it’s not surprising that this would manifest now although up until this happened, I really was taking great care of myself meditating, exercising, eating carefully and healthfully, etc.
So here’s my question. It appears from what I’ve been reading that most of the time, once this thing gets into the system, it flares up again and again, is this true or is it more likely that this is a one time experience and once it’s out of my system it will be done for good?
Also, I’ve now developed an annoying itchy sensation all over my body- not really a rash – more like little bumps- is this par for the course with this thing? i thought the rash happened first? Any ideas?
It sure seems like there’s not much being done to find a cure for this based on what I’ve found on the web- is that correct or am I missing something? This thing seems to be taken very lightly by the medical community and I can assure you, if I do have the B19 Parvo virus, the pain in my knees and my swollen hands were not a little deal.
Thanks much- happy to find this group.
Shari said,
May 20, 2013 at 12:17 pm
I never had the itching that some have referenced but when I first came down with the virus I had the same debilitating pain and inflammation that you had. My knees were so bad that if I was in a kneeling position, I had to have someone help me up. I, too, could not even come close to closing my hands into a fist. The steroids did help to reduce that but I continued to have severe joint pain for up to a year.
When the joint pain and horrible fatigue began to subside it went full on to massive muscle pain throughout my body. Mine has never been a “flare” situation. I haven’t been pain free for 11 years now. I’m in less pain than when it first started but the pain is always there. I think my diagnosis is closer to myofacial pain syndrome than fibromyalgia, although I do also have all the tender points of fibro too.
Stress is a HUGE deal with chronic parvo! I was in a horrible marriage when all this happened with tons of stress. When I divorced, my pain went from a 10+ to about a 5-7. Then I went vegetarian and started making all my food from scratch and that helped the pain even more. I also make fermented veggies and kefir. Diet will help you more than any of these crazy meds they throw at you. Vicodin didn’t even take the edge off my pain, much less give me any relief. Stress reduction and healthy eating did FAR more for me.
Good luck on your quest. And yes, this parvo really sucks!
Shari
Tam Wedgwood said,
May 20, 2013 at 8:48 am
Unfortunately, I think what you’ve said is correct. In this form, the virus does cause on going flare-ups that can be very painful & debilitating. It can also lead to cfs & chronic pain. There is some research going on, but over all I would say most doctors are very poorly informed about it and generally take it very lightly. That includes family doctors and the “experts” (rheumatologists etc) to whom we are referred. Very few have heard of or believe in the role Parvo virus can play.
Dietary changes do help – they really do. It is well worth increasing your protein & vitamin intake (esp Vit B complex) and cutting our refined carbs & sugar. But as for medicine? drugs/ other treatments? There seems very little.
kmainmiami said,
May 20, 2013 at 12:46 pm
So from what I’m gathering, chances are this is not going to be a one time experience- once the virus is in your system it remains there and in some cases flares up from time to time depending on various circumstances or simply remains there and you learn to manage through it, rather then working it’s way through and being finished as with other viruses? Will keep meditating and working through the stress since, Shari- I have to agree- stress is a trigger and whatever can be done to reduce it will make a huge difference.
Will contact my holistic nurse to get her take on what else I should be doing. Am already a vegetarian, will cut out more refined carbs (already eating very few anyway) and do more research on anti-inflammatory foods (made a big pot of ginger tea last night). Mornings are the worst time of all – hands and knees are sore from the night before- very difficult to get out of bed. The prednisone is doing it’s thing and the relief comes an hour or so after taking the pills in the morning and lasts a good part of the day, but I do not want to be on this for too long knowing what a terrible drug it is and how bad it is for the rest of my system. Have not yet taken other pain meds except advil but may need to start today since I am back at work and will need to at the computer so my hands have to be working and not in pain. Suggestions for over the counter meds in conjunction with the dreaded prednisone? Cannot do narcotics during the day since I am working full time and need to be alert. Thank goodness I work from home most days!
Has any one tried acupuncture? I’m thinking that will also be helpful since it’s an amazing relief for arthritis and other similar ailments.
Keep those suggestions and support coming in. This is a very new experience for me- am still hoping this is a one shot experience….
Joey said,
May 20, 2013 at 12:52 pm
Acupuncture has helped. Unfortunately it only seems to help when I have a flare up and I never know when that will be, so getting an appointment when I need it has proved difficult. I do not want a standing appointment because I really cannot afford to go when I don’t need it, which makes it even harder still. The last time I went the relief was instant and lasted through the flare up…which took way less time than if I had just suffered through. Hope this info helps. Good luck!
Tam Wedgwood said,
May 20, 2013 at 1:08 pm
Pool therapy has helped my daughter. It helps the pain, but also helps relieve the stiffness when her joints, hands and feet are very swollen. Therapy with a qualified physical therapist in a saline pool is best, but even now that she does not attend therapy, swimming in a regular swimming pool is helpful when her pain is bad, & because she knows the therapist’s exercises she can do those herself in a regular pool.
kmainmiami said,
May 21, 2013 at 1:00 pm
Pool was great, Tam-thanks for the suggestion. I swam for about 15 minutes last night – laps and just walking around in the water for a while and found it to be very helpful because it allowed my joints to move around without stress. Once I’m on the upside of the prednisone I feel so much better but it concerns me to be taking it, my face is beginning to swell and I don’t want to be on it long term. Until the blood tests come back there’s nothing much anyone can do unfortunately, from a medical perspective because they don’t yet know what this is although based on everything I’ve read and what my primary and the rheumatologist said, it does appear to be parvo. Have to say mornings are just horrible- could barely get out of bed today between my knees and hands and even my elbows hurt today. Plus I’m not sleeping well because the pain wakes me up. Amazing how much this is minimized on line by the medical community but there are clearly a lot of people suffering with this out there with this thing.
Tam Wedgwood said,
May 21, 2013 at 3:43 pm
Glad it helped – I know it really helps my daughter! She is going swimming a lot at the moment due to a worse time with her joints, & a new job that she needs to stay healthy for!
Misty said,
June 3, 2013 at 5:21 am
I experienced a severe case of b19 in December 2012 and I have yet to feel “well” again. I don’t understand what is going on or how to accommodate the pain and fatigue I have been suffering with. I am a single mom of 4 and I haven’t worked since the illness and honestly I don’t know if I can. There are days I can’t hardly raise my head up and others that I can barely walk. I’m trying to find a doctor that can help but I honestly don’t know who to see but I just cannot hardly deal with this anymore.
serenamuse said,
June 3, 2013 at 4:47 pm
Misty,
Don’t give up hope. I started to get better around six months in after the initial infection. I was well for over a year after that, but during a period of extreme emotional stress it came back. Take care of yourself, eat the best whole foods you can, consult a naturopath, rest but also walk when you can, to keep your strength up, yoga if possible. Do you have any support, family, friends or church to help with the children? You need to ask for help and get the rest you need. I can’t imagine going through this on your own. Don’t be afraid to ask for help.
Leslie said,
June 3, 2013 at 11:36 pm
Hi, Misty… I feel so badly every time I hear someone that has been hit so hard with this virus, as I have been. I’m a single mother too and I can empathize with not only the debilitating nature of this illness but the fear and worry wondering how you’ll cope on the many levels that long term illness affects everything. I was a fiercely independent and strong woman and it was hard to reach out, but I’ve had to. I truly wish you improved health, but realizing this will take time is important. Try to find a doctor who believes in you and the more persistent nature of this illness and read through these posts. They’re a big help (in most cases).
Rocket said,
June 12, 2013 at 5:49 pm
hmmm .. I have Parvo B-19 and have had it for almost 2 years now. It comes and goes… but now I have EXTREMELY painful Cramps iin my legs that debilitate me and give me excruciating pain. I found that diet and exercise does help a lot. My muscle mass was disappearing and the joint pain was terrible. I would have 8-10 good days, then all of a sudden have 2-3 days of total fatigue and muscle/joint pain. After almost 2 years, this new Type 5 cramping is a total surprise. Its the worst symptom I have faced as far as pain goes. I drink lots of water but it still doesn’t stave off the cramps . Some people have had B-19 for over 10 years and it won’t go away. I am an athlete and always have been it great shape but this virus has taken it’s toll. I hope the Doctor’s of the world will consider this B-19 serious enough to put in research for a cure.
I wish the best to everyone with B-19… I got mine I think while shopping and having children cough on me. O well. Now all we can do is fight this as much as possible. Good luck and prayers to all infected.
Andrew said,
June 24, 2013 at 4:28 pm
Your comments about a week of good days and 2-3 days of total crash describe my recent experience. My mom had a serious surgery recently. Two wks after her procedure I returned to parents’ home to support them for a month. I took care of meals, dishes, shopping, and changing dressing. After 5-6 days, much on my feet, I collapsed to bed for a day, 2, or 3. My temp was yo-yoing, and I was miserable anyway from arthralgia and fatigue. My typ temp is 97.5 F, but in those down times I ranged from 95 to 100 F over a 4-5 hr period. I tried to keep up acetaminophen each 4 hrs; perhaps it helped sometimes, but without it I was shivering and overheating usually in the hottest time of day.
Your experiences seem typical for me. Sorry you’ve joined this club: dues are very high, and membership takes all you’ve got sometimes. Best of luck to you. Keep sharing your story for support to self AND others.
Sofia said,
June 12, 2013 at 8:29 pm
Hi everybody! Have anyone tried Magnets? http://www.biomagneticpairtherapy.com
Megan said,
August 21, 2013 at 9:48 pm
Hi Everyone. Just wanted to introduce myself as you all have made me not feel so alone in the world where I’m tired of people asking me why I’m walking funny lately.
I was diagnosed in April so it’s only been 4 months but I can tell the joint pain and swelling isn’t going anywhere anytime soon. I’m 30 walking around like an 85-yr-old and asking people to open my soda bottles.
Anyway, will post if I find any helpful information to add to the conversation but thanks again for all of you sharers that have left a lot of research for me to go read.
Stay strong!
Leslie said,
August 25, 2013 at 3:52 pm
Hi, all…Sorry to start with “It’s been two and a half years since I got parvo virus,” but it has, and I’m just despondent over my continued symptoms. The question I have for you all today is, does anyone have body wide chronic pain after this many years? I’ve been evaluated for fibromyalgia three times… no tender spots. I can’t even say it feels like muscle pain; its just ridiculous pain that never stops, everywhere. I have neuropathic pain too. The neuro things started about three months after getting slammed with the initial dx of parvo and all the more typical symptoms; then the “muscle” and generalized severe pain started a year and a half later. Only the joints of my hands and wrists really bother me now. I’ve been to every doctor possible… even had two rounds of IVIG… and things just keep progressing. It’s believed everything is “immune-mediated.” But why does it keep on rollin’ on? Many thanks to you all, and blessing for the day.
Shari said,
August 25, 2013 at 4:52 pm
Hi Leslie,
Sorry to be the bearer of bad news but I’ve now been battling the aftermath of parvo for 11 years now. Unlike you, I do have all the tender points of fibro but also myofascial pain syndrome too. I no longer have the fatigue.
The good news is that my pain has dramatically reduced in the last 6 years. It used to be a 10+ but is now a very do-able 2-5. I have lost a lot of strength in my hands and wrists. Severe cold in the winter can exacerbate the joint pain in my hands but it’s not severe any longer.
Oddly enough, the muscle pain didn’t start for me until about a year and a half later too. Strange, isn’t it? My symptoms first looked like RA and then as the fatigue and joint pain began to subside, it morphed into severe muscle pain throughout my body but especially in the neck/shoulder/lower back/hip areas.
Doctors do not know how to treat us. They can only try to give us meds to manage the pain. I don’t take any meds at all. They’re only going lead to additional problems in the long run.
For me, I completely cleaned up my diet. I’m mostly vegetarian and occasionally purchase meat but only from my farm co-op where I know the animals are not fed GMO grain and pumped full of hormones and antibiotics. I make my own kefir from raw milk and try to add fermented veggies to my diet. Sugar is bad for all inflammatory conditions so I’ve kicked that one to the curb too. Gluten can increase pain for some of us too. You may want to try an elimination diet where you start with a very simple, restricted diet and items one by one to see if it increases your pain.
Bottom line, anything you can do to enhance your immune system and reduce any toxins is going to help. It may not be an overnight miracle, but it can help reduce the inflammatory condition. Most of our immune system is in our gut so that’s a great place to start by eating foods rich in probiotics. If you’ve ever taken antibiotics in your lifetime, I guarantee that you don’t have enough of the good bacteria and too much of the bad bacteria in the gut. The meat we have eaten is also pumped up with antibiotics. In fact they’re starting to see a link in antibiotic resistant bacterial infections such as MRSA and the consumption of typical CAFO meat. In countries that have banned the use of antibiotics in animal feed have seen a dramatic decrease in such infections.
I’ve run on long enough! Lol! Can you tell I’ve been at this for 11 years? The one supplement that has probably helped the most with pain is a magnesium supp. It helps muscle function on the celluar level.
All the best,
Shari
Leslie said,
August 29, 2013 at 3:00 am
Hi, Shari… I read through your reply again today. I bought a magnesium supplement and will add that to the others I’m now taking. You know, the virus hit me badly in my “gut”. I had colitis and lost quite a bit of weight fast. I literally went months with eating very little. So, I do wonder if the virus settled into my “gut” somehow… and now, food and how it’s digested is a factor in the various types of pain I have. Really, thanks for sharing advice and hope!
Barb A said,
August 25, 2013 at 6:13 pm
We all need to find a clinical study or a researcher/MD will to take on Parvo, how to you think we can progress with this. As a healthcare worker we can start by looking at universities, clinical grants and larger healthcare institutes, government programs. I am willing to put in the effort if others are willing, this process can take a while. We might have to put our own demographics together and market our groups, symptoms. I can say there is a study going on regarding B12 study at NIH, Bethesada, MD. Not that this blog is not useful, but we keep rehashing the same complaints, lifestyles and changes we all have made ourselves. I just truly believe we as a group have a lot to offer someone willing to listen.
Leslie said,
August 25, 2013 at 6:51 pm
Shari… you’re so very kind to give such a detailed reply. I have a recently elevated ESR (50), and another weird finding is that when all the severe pain set in last September, so did a rash very similar to the parvo rash all over my arms, chest and back, more faintly on my legs. It was biopsied recently and found to be a perivascular inflammatory infiltrate. Keep in mind, this is over two years later and the rash is there every day. So, reducing inflammatory foods I’m sure would be to my benefit. I went gluten free for three months and didn’t notice any improvement; but maybe that wasn’t a fair shake. I realize it has to be a permanent life style choice with a lot of self-education, but words of advice help so much! I am glad that you feel improvement after these many years and glad that your quality of life has no doubt improved… yay! Many Thanks.
Barb, I’ve seen you and others post about parvo awareness and research before. My feeling is that even though our voices are loud and clear here, we really do represent a small minority of people for whom this virus is devastating, and therefore the chance of ever having any real money or interest by research doctors is probably not going to happen. May sound negative and self-defeating, but my opinion nonetheless. I have compiled mounds of medical journal and PubMed articles… really reliable, good stuff… that one day when I have the energy I’m going to post here to save someone else endless hours of effort. The bottom line: The parvo virus interacts with the unique genetic and/or acquired properties of the “host” (that’s you and me) and for that reason probably affects us all differently on some levels, though the more typical manifestations are common to us all. For that reason, just having people here who can say, yeah, that happened to me, too, is some reassurance when doctors say, no, way! I know you once posted that you have severe leg/thigh pain, right? Me, too. I’m just confused because with this kind of widespread severe pain, you’d think I’d come up positive for fibro, which always makes me fear that something else, yet undiagnosed, is there.
Thanks for your replies!
Tara Applegate said,
August 28, 2013 at 11:47 pm
Please help
I had my blood test come back normal all the auto immune then she said let’s test for parvovirus I kinda laughed and it is the only test that had came back positive B19 IGG 4.4
No one wants to listen to the pain fatigue joint pain insomnia night sweats is causing me it is causing me to have no quality of life. All I can do is lay around. Please help who do I need to see
Tara
Leslie said,
August 29, 2013 at 1:52 pm
Hi, Tara… 😦 I so understand how you feel. We can only hope with time that we’ll get better. And when I say time, it could be QUITE SOME TIME. If you read above, Shari did; as others who have had to wait this out, and in the meantime, have a lot fall apart. Believe me, I’ve been to every doctor possible and this virus is not well understood. Two and a half years later, my IGG is 6.7. I don’t know if it ever drops the farther out we get from the initial virus; and with it, our symptoms. Does anyone else here have experience with that? I too developed insomnia, fatigue, yada yada… it’s weird how this virus systemically affects some of us. Hopefully, your doctor is sympathetic and will acknowledge that this virus can be a tough one and help you with the medication you need to get on your feet and persevere through it.
Really, that’s all there is. I’ve tried everything.
Jenn said,
August 29, 2013 at 10:19 am
Tara, I understand your frustration. After a few doctors brushing off the virus blood test confirmation with – wait and it will work it will work itself out of your system and ortho doctors ready to schedule me for carpel tunnel surgery even though there were no signs of nerve damage – I visited a wonderful chiropractor/wellness doctor and he was the first to truly empathize, describe that parvo b19 is systemic and treat it. With a mixture of adjustments, laser therapy, acupuncture & whole food supplements – the joint pain and inflammation were gone in about 2 -4 weeks. He stressed that he has treated patients with parvo virus b19 at the onset with great results quickly but since I had been suffering for months it would take longer. Who knows if the virus “worked its way out” or if his treatment worked – but it was so great to finally have a doc finally acknowledge the suffering. A year later – I still have daytime fatigue that I didn’t have prior to parvo but at least I can open a peanut butter jar & drive my kids to Kung fu class. Best of luck!
Andrew said,
August 30, 2013 at 12:27 am
I got my first pv b19 result in Jan 1013. I’ve taken famciclovir 500mg 3xday since then. I don’t report any exciting positive results. It didn’t bother my stomach. He says some positive results come from longer therapy so I’m keeping it up.
I reported a suspected May-July flare-up to my docs (I was out of town). Chills with fever and chest-neck-back itchy rash and exhaustion were the symptoms. Thanks for the mention of the hydroxyzine for itch.
Then interesting mid year pv b19 results came in. PV B19 IgG Jan 2013 result 6.2 and July was 10.4. Both were neg for IgM. Those results certainly match the way I was feeling.
rebecca J. said,
August 30, 2013 at 12:47 am
I was diagnosed with parvo b19 and subsequently with antiphospholipid syndrome and several additional autoimmune disorders. After 2 years on plaquenil and many other medications, I chose to go an alternative route. I found a holistic doctor who detoxed me with herbs for 5 months while I adhered to a strict vegan diet. I am off all medications and feel like I am living rather than the living dead. The above comments regarding the gut on right on the mark- you need to heal your gut and cut out all inflammatory foods while detoxing your system to have the ability to regenerate cells and heal your body. The parvo virus without a doubt set off a very unfortunate series of events and illness for me and western medicine offered me very little hope. My advice is to find a holistic doctor, acupuncturist that specializes in herbs and detox, or an integrative doctor is the only path to explore. Juicing is another idea to explore. Research leaky gut and candida yeast in conjuction with virus for extra informatiuon on root causes of a compromised immune system. Many symptoms may match. Good luck and keep the faith- the answer is there with persistence and fortitude.
rebecca J. said,
August 30, 2013 at 12:56 am
Check out the link through Dr. Oz- talks about leaky gut and the suseptibility of virus. Fix your leaky gut and help heal your body even after contracting parvo. It worked for me. http://www.doctoroz.com/videos/could-leaky-gut-be-troubling-you?page=2
Andrew said,
September 1, 2013 at 1:33 am
I’ve rediscovered the older comment regarding PV B19 invasion of organs. Comment responded to The Rash. Archive 12 – 11 – 2008 at 7:36pm. Author is Parvofighter in Canada. Paragraphs 3 and 4 mention viral heart infection among others. What more do we know 5 years later?
Brian from Phoenix said,
September 19, 2013 at 4:01 pm
I’m a 37 year old who first contacted Parvo B19 when I was 33. My wife got it from my son. We both had terrible joint pain and were confined to our bed for about two weeks. We both got better, then one day I was driving and noticed that my jaw was out of place, so much in fact that I could not chew food normally. I was tested for everything from lymes to RA. They eventually diagnosed me with Reiters Syndrome, or Reactive Arthritis. There has been some research that shows this often caused by PB19, but is often treated improperly. There really is nothing they can do but manage the symptoms. I have swelling in my jaw, wrists, hips, knees and lisfranc area of my foot. Plus the excitment of random symptoms each time I get a flair up…such as swelling of the prostate, super red eyes, and one exciting time little bumps on the tip of penis that cause one doc to order a full std workup, and of course I had none. I have sworn off prednisone and pretty much everything else. I treat it with 800mg of ibuprofen twice a day, 30 minutes of yoga, twice a week massage therapy sessions, a macrobiotic diet and daily fiber with the addition of olive leaf extract, and occasion oral aloe vera gel to help the stomach heal from the NSAID’s. When I stick to the macro biotic diet my symptoms dissapear…it’s just really hard to stick with.
serenamuse said,
September 19, 2013 at 5:22 pm
Brian, I too had the experience with the jaw. I could not chew food for days, gradually it let up. Just one of those strange unpredictable symptoms. I’ve not tried olive leaf extract. What does it do?
Lisa rogers said,
September 24, 2013 at 9:49 pm
Hi im a nursery nurse that caught this at work .It’s been 4 months since my swelling and pain has went but I have been left with a “fat wrist” I have had an ultrasound on it and got feed back from the doctors and they said its fine !!! Do you know if this is part of recovery and it will go down or is there any cross reference of the parvovirus or is it just lump. Hope your having more good days .thanks for this page.
serenamuse said,
September 25, 2013 at 1:13 am
I have not had that particular symptom, but after having the parvo nothing ever reacts normally. After having my incisional biopsy on my breast I developed an infection- oozing fluid and pus – and yet after three cultures it never grew anything. I have experienced short term memory loss, dizziness and exhaustion, and of course, nothing shows up on a cat scan or ears or EKG. I’m fine! I know how frustrating it is to be told nothing is wrong with you, when clearly you are not right!
Andrew said,
September 26, 2013 at 6:58 pm
Here’s a story of a problem that involved the wrist; I don’t know how / if it relates to your experience. Andrew
http://cid.oxfordjournals.org/content/41/4/42.full
William said,
September 25, 2013 at 1:37 pm
Hi, our daughter, 16 yrs old, has been dealing with this for 15 months now…same story as most of you! She was tested for a past parvo virus which the doctor has said that fact is not significant, almost everyone has at some point. We found this site and saw that one person on here had positive results using Valtrex. Has anyone tried this drug and have had positive results? Please any information would be helpful. We go back to the doctor next week. We have also spoken with a lady whose child has had similar symptoms — had to quit school, sports, etc., was home schooled. Dealt with it for 5 years, ended up at NIH this past december and it was recommended to remove tonsils and adenoids — she states, her child had two mild episodes soon after surgery and none in last 9 months. She is elated with the recover. And like everyone else, she had to fight to get this done. Has anyone had their tonsils removed and it helped? The doctor wants to diagnose our daughter with Stills disease and start therapy with anakinra when she only presents with a few of the symptoms. Fever almost every day, fatiqued, sore, pain in joints, sore throat, tender spots, most days with a rash that moves around her body….she already went through the Prednisone which was a temp. fix. Any help, we are struggling everyday, but seems to not be alone. Glad we found this site. William and Jenny
serenamuse said,
September 25, 2013 at 5:03 pm
Just curious, did they only test for evidence of past infection or did they test for current active infection? They are different tests.
Andrew said,
September 26, 2013 at 6:53 pm
Dear William, Re: anti-viral meds
I used the 2nd generation anti-viral Valtrex long term without success. I’ve used 3rd generation anti-viral famciclovir (correct spelling) for 8 months. My IGg was 6.2 in Jan 2013 and 10.4 in June 2013.
I believe I had experienced a flare-up from April – June so the higher IGg result was no surprise to me.
My doc spoke of some benefits arising from a year of treatment. Thus I continue using famiciclovir for at least a year or so.
Andrew
William said,
September 26, 2013 at 9:37 am
They did both if I understand them correctly. IGG was 4.63 and IGM was 0.11….they said that meant she had a past infection. However the IGG test says on it: a IGG greater than 1:1 could be current or past but because the IGM was normal, they said it was not significant. We have an appointment this morning to see about having tonsils removed, we will see. Any input is appreciated. William and Jenny
William said,
September 26, 2013 at 4:10 pm
We saw the ENT specialist this morning and are scheduled to have tonsils removed next wednesday.
Leslie said,
September 26, 2013 at 5:34 pm
Hi, All… William, I’m sorry your daughter has struggled so much. The people here have lived a “parvo story” that’s so different than what most doctors are familiar with or will even acknowledge. I have said before, I have piles of articles about it and the various manifestations… though, in the end, the articles just provide knowledge, not a cure. The knowledge gives a reason for what otherwise has been one “idiopathic” health problem after the next for me, so I guess it does serve a purpose for me, personally. As an FYI… no medical advice…the virus can harbor or find a reservoir in almost any organ or tissue in the body. And then, it seems as though only some people seem to react to its presence, either through a viral persistence or from an immune response to it. So, the person with whom you’ve had contact and who visited the NIH, her daughter may have had a manifestation that led them to believe it was in her tonsils. (I’ve read articles it can harbor there, in the throat, thyroid… the list goes on). I’m not sure there’s a necessary correlation to others who experience difficult, continuous health problems since getting parvo. I.e., we should all go get our tonsils removed. I sure hope it’s your answer, though.
Blessings to you and your family.
William said,
September 26, 2013 at 7:01 pm
Leslie, thank you for your reply, it does help having the support of others and others that experience the same things. We hope it helps. The ENT said there is a 70% success rate with these symptoms going away with tonsil removal…he was very willing to remove them. However, he is the same surgeon that the other girl, Samantha, went too so that helped. What a success story…hope we are as fortunate. Will let you know soon. Jenny
Lori Sabins said,
September 26, 2013 at 7:12 pm
William -does that mean even adults should be having tonsils removed?? I started last October with my symptoms of arthritis , migraines and severe fatigue. I got better but have it all back again! I go tomorrow for an ingrown toenail removal and worried it won’t heal right with this weird condition!!
William said,
September 26, 2013 at 7:44 pm
Hi, is there an easy way to follow a post…there was a post by Jeepers in Feb 2013 that said he convinced his doctor to test his spinal fluid for parvo and would keep us advised, however I have not seen another post, anyone know the outcome? Jenny
Jeepers said,
September 26, 2013 at 8:08 pm
I’m here:-) I’m never sure how to reply. Please feel free to email me at jeepers06@hotmail.com. A woman was looking to talk to me also a while ago. I think her name was Leslie. I wrote but not sure if it ever posted!
Jeepers said,
September 26, 2013 at 8:14 pm
I should note that my spinal fluid came back negative for parvo. I still don’t feel like myself. I have pushed and pushed and done more but still suffer from some things I fear will never go away. The parvo effected me more neurologically. My cognitive skills have improved however I still feel off balance, foggy, cloudy. Not dizzy just not right- hard to explain. My arms still feel sore also. For example I don’t hold a baby for a long time.
I’m on zero meds and just started acupuncture so I will keep you all posted.
Hope everyone else is coping the best they can!
William said,
September 26, 2013 at 9:49 pm
To Jeepers, thanks for the reply. by chance do you still have your tonsils? Did you see my earlier posting regarding the girl that experienced all this for 5 years and then had tonsils out in Dec ’12 and no more flares. so I am curious as to if you have your tonsils intact still? Thanks, Jenny
William said,
September 26, 2013 at 9:50 pm
Has anyone tested positive for parvo B19 in synovial fluid, spinal fluid, any fluids or tissues and negative in blood. I have research that shows a client that tested positive in synovial fluid and negative in blood. I appreciate any reply.
Andrew said,
September 29, 2013 at 6:08 pm
William, I, too, saw the paper describing positive tests for PV in various body tissues. As I recall many tests were performed during autopsies. Some others occurred when specific tissues had surgical procedures or biopsies. I recall presence of virus didn’t always indicate symptoms in that area. Good luck, Andrew
Jeepers said,
September 26, 2013 at 10:15 pm
Yes I do still have my tonsils. Interesting concept. Did the girl have symptoms like mine by chance?
William said,
September 26, 2013 at 11:47 pm
She got sick in the 5th grade and dealt with it under 16 yrs old. Had to be homeschooled…and almost couldn’t function. She had periodic fever syndrome (her ending diagnosis), they looked at lupus then gout, then….etc., for 5 yrs….through trials of medicine she had her gallbladder taken out, her thyroids taken out. The sad part is, her mom requested to have her tonsils out 4 yrs ago and they said nonsense. She found a lot of research online where it helped others…all the symptoms vary it seems…but mostly the same. I am not sure she had neurological symptoms…but fevers almost daily, soreness, joint pain, throat hurt, rash….every day was different. I also have done a lot of research…where tonsils have taken out and helped others with psoriasis, arthrisits, and I have found where they only tested positive for Parvo B19 in the IGG not the Igm…there was one person diagnosed with still’s disease (that is what they want to diagnose our daughter with and she only have 25% of the symptoms)..the guy with Still’s was treated for still’s but nothing helped..they gave him 4 treatments of IVIG and he was cured. I can send you the research material. I am actually putting together a package with all my copies of materials to present to our doctor if the tonsils don’t work. The next thing we want is IVIG. He wants to treat with anakinra (which I saw online the NIH is in the middle of a research project on it’s effect) so that answer’s why he is so persistent to give it to her! He is a very well know physician and has many proven research projects. I hope removing her tonsils helps..it makes sense that a past parvoB19 virus could be dormat in her tonsil tissue…it can test positive in spinal fluid, synovial fluid, heart tissue, tonsil tissue, liver tissue….and the tonsil is perfect….and if they are damaged and not doing their job, you would be sick. So say a little prayer for her that it helps because it may help a lot of other people get better…it we have two that it helped in the same area! Jenny
William said,
September 26, 2013 at 11:48 pm
Also my daughter has complained of feeling dizzy for the last two days (this is new)..
William said,
September 27, 2013 at 12:34 am
Lori, just saw your reply….we are going on news of 1 success story…we will have our surgery next Wed.; let’s see if we have the same success!
William said,
September 27, 2013 at 12:34 am
Martha, are you still part of this group and did the Valtrex heal you? Please help
Jeepers said,
September 27, 2013 at 12:57 am
Interesting Jenny. I pray this is the answer for your daughter. I myself did receive ivig for 5 straight days in February 2012 and then I started it again in May 2012. That time I had it 1x/month for 6 months. It did help with the leg and arm pain. It didn’t clear up my head though. Slowly I am getting better on my own. It doesn’t help that since I caught this I am super sensitive to any chemicals I.e. Antibiotics.
William said,
September 27, 2013 at 1:04 am
Jeepers, thanks for all the input. It has helped relating to so many people but sad that there doesn’t seem to be much help out there…I guess we are looking for a miracle..but they are such! So let’s all keep our heads up…I just hope we are still not on here hurting in 5 years to come. I am glad to hear that you are still improving….and hope things keep looking up for you. Jenny
William said,
September 27, 2013 at 12:31 pm
Anyone tried anakinra? Our doctor wants us to try a trial of anakinra for Stills Disease, it is an injection?
William said,
September 27, 2013 at 2:42 pm
One more question, I would like to do a research poll, please respond if you have tonsils or if you don’t have tonsils please. Either on here or my email is salonattitudes@gmail.com Thanks, Jenny
Toohey McQueen said,
October 4, 2013 at 3:34 am
I don’t have my tonsils. I had something called Tonsillarcryptittis and they had to be taken out and the Dr. said they were in very bad shape at that time. Very rotted when he did the surgery. And that was about 2000-2002.
serenamuse said,
October 4, 2013 at 9:42 pm
have tonsils
Harding said,
October 6, 2013 at 9:23 pm
Have Tonsils, enlarged Lingual tonsils (the part that goes down deep in your throat).
jacobc76 said,
August 28, 2014 at 8:38 pm
I still have tonsils and I am 38. Just tested positive for parvo but not sure how long I’ve had it. Possibly years ,working on that now. I can trace a lot of these symptoms back as far as 9 years. Very scary I just found out about this disease. So glad I came across this blog tho.
Toohey McQueen said,
October 4, 2013 at 3:29 am
I don’t know what is going on with me the last few months and the Dr’s. don’t either. They said they need to find out what’s the driving force that’s causing all this pain and inflammation. They have run all kinds of lab test, blood, stool, urine and even tested for heavy metals since I had the mercury fillings in my teeth. I did have high aluminum and minimum levels of lead, but was told lead can come from Ur running tap water, rain, dew, and some others and aluminum from Deodorants and pots and pans. So had me chg. up on those things but its not helping anything so far. She put me on some expensive vitamins because they are more potent and also a probiotic powder to drink w/ 2 oz’s of pure water once a day. And she still has some tests to go over with me still on the 9th of Oct. I’m also taking Opana ER 10 mg twice a day for the Fibromyalgia and Osteoarthritis pain & Lyrica 300 mg for Fibro. also with Muscle relaxers and anxiety medication and Thyroid med also. I have a lot of health issues but now something else is going on causing me to have too much inflammation in my body. So I’ll see if she tells me anything on the 9th!! I am a 57 yr old woman that has been dealing with this since 2003.
William said,
October 4, 2013 at 11:19 pm
Sydney is sick every month almost everyday except for maybe 5 days out of the month. She is only 16 and been sick for 15 months. Started in the 9th grade. She has almost every day a rash which is sometimes covering 80% of her body, very very sore…not sure joint pain or muscle or tendon pain…but very sore and fatiqued. She is very anemic…and her inflammatory markers are sky high…ferritin level been in the 4,000 range. She has a fever everyday around 4pm to 6 pm…from 101 to 103. It has been controlling our lives. We have been seeing a rhematoidologist since last July. We have been to the hemetologists, allergists, internal medicine, dermatologists, renal specialists, eye specialists…every doctor we can imagine. She has had over 200 lab draws. We met another mother in the same town we live….daughter with periodic fever syndrome. She was going to same doctors…got a referral to Duke hospital, then NIH…found out she had periodic fever syndrome (same kind of symptoms)…recommend tonsillectomy…and she was cured! No symptoms for last 10 months! We just went to her ENT had tonsils out and are praying we have same results. The morning of surgery, Sydney had 101 fever, sore and rash! Since surgery she has not had a rash (other than a mild spot on thigh), one fever of 100.1, and no soreness! It has only been 3 days but we are praying. She has had a fever, soreness, rash since Sept 10th…21 days straight…and it is the same every month. This might not help adults that already have damage…from medicine treatments and being sick so long…but other kids that have the symptoms…this might help! Jenny
Leslie said,
October 5, 2013 at 2:29 am
Hi, All… I thought I’d share a very recent article from March, 2013 regarding parvo, especially since it references something about tonsils. Be warned… this is one of the more complex articles I’ve come across and gets into it deep! But if you muddle through or skip over the stuff that’s for “virologists only” you can glean some info that may be useful. Interesting that it mentions tonsils. It’s the first thing in two years of researching that I’ve seen something about that.
P.S. No, I don’t have my tonsils.
Parvovirus B19: Achievements and Challenges
Author: Giorgio Gallinella
ISRN Virology, Volume 2013, Article ID 898730
http://www.hindawi.com/isrn/virology/2013/898730
William and Jenny… healing wishes for your daughter!
William said,
October 5, 2013 at 12:42 pm
Leslie, thanks for the article….I also have found others similar…and it at least proves that the virus can be silent in the body and can be detective in tissues and a lot of different tissues. And can establish long-term relationship with human hosts. Our doctor said because it is not positive in the blood test that she is negative….and that she is immune to the virus…which evidentely is not true. This is why everyone has flare ups. Our Internal Med physician said that taking out the tonsils has a 70% chance of working and that it might just be enough change to the DNA to allow her body to fight it off and equal out….I didn’t state that exactly right, but makes sense. If the tonsils don’t work, then she is willing to try a viral medication. So I think we are on the right track. However we are on day 4 and she has had no fever, rash or soreness and has had all of those for 21 days straight right up to the morning of the surgery. We are praying. I guess it depends on where the virus is hosting in the body whether it be the bone marrow, synovial fluid, heart tissue, etc., we are hoping removing this one unneeded tissue is enough to throw it off balance. Thanks for the input. Jenny
serenamuse said,
October 5, 2013 at 11:27 pm
I’d like to post these articles on our resource page. Can you send me the links? serena@serenapotter.com thanks!
Leslie said,
October 6, 2013 at 12:10 am
Hi, Serena… do you need anything more than the web site I provided above? It’s really worth posting. As always, thanks for helping us gather here for answers!
Leslie
julia said,
October 5, 2013 at 10:27 pm
still have tonsils
tina said,
October 9, 2013 at 1:15 pm
Question for everyone. has anyone had any luck with anti depressants to treat the muscle/joint pain? My doctor gave me Cymbalta to try. I took it for just two days. I really was going to wait it out for the 2 week period but I got SUCH bad insomnia. I have always thought I have restless legs syndrome. This drug magnified it times a zillion to restless entire body syndrome. Hours upon hours of tossing and turning all night.
So I didn’t take my dose last night…… and guess what? I woke up with every part of my body sore. The two days I was on it I was almost pain free. But is it even possible for Cymbalta to work within hours of taking it to block my pain receptors??? I have read it takes a week or even 2 full weeks to kick in. That may be for the depression aspect though. Now I am wondering, it’s a deal with the devil = no sleep or pain. Which is worse?
Another thought is maybe there’s a different anti depressant that’s not going to give me killer insomnia? Anyone have any positive experiences with an AD treating their pain???? Thank you.
Shari said,
October 9, 2013 at 4:19 pm
Wow, it’s funny you mentioned this. I had a doctor prescribe Cymbalta too. I stayed on it for 6 weeks and finally quit due to horrible restless leg syndrome and I never had RLS before I started the Cymbalta. My doc said that all SSRI’s (selective serotonin reuptake inhibitor) will cause RLS if one of them does. It did help my muscle pain but long term would have caused more problems than what it was trying to fix. Also, I’ve heard of horrific stories of side effects when people try to come off of this med after taking it for awhile and that’s even those who have weaned off slowly.
You probably have problems with your serotonin levels. It would cause me to wake at night and basically, I could never achieve true Stage IV deep sleep. That level of sleep is when your body heals and repairs, especially the muscles.
I did tons of research and finally looked into 5-HTP supplements. It helps to naturally boost your serotonin levels. Vitacost.com has pretty good prices on this supplement. It seemed to finally reset my serotonin levels and I rarely have to take them any more. Do a search on it and see if you think it may be right for you. All antidepressants can be bad news if you don’t need them for actual depression.
Because my pain and fatigue was so intense for a few years after parvo hit, I, too, tried a couple of different meds. NONE of them did anything for me. Taking a select few supplements and cleaning up my diet did way more than any pharmaceutical did. My main supplements I take are a quality B-complex, magnesium, D3 and vitamin C. I may not take each of them daily but I try not to miss too many days. I source all of them through Vitacost because you can get health food store quality items at grocery store prices.
Bottom line, the most important thing to do is strengthen your immune system as much as possible. Sugar can really wreak havoc on our immune systems so try to avoid it as much as possible. Building up our gut flora is also critical for a healthy immune system. I make my own kefir with raw milk and make my own fermented veggies when I can. Homemade kefir alone, works far better than any probiotic supplement you can find on the market.
None of this is a stand alone silver bullet but together with a made-from-scratch diet can do far more than any drug ever could. If you’re able to source your meat from a local farm that allows their animals to pasture feed (no antibiotics or GMO’s in their feed) that would be a huge plus too. I hope this helps.
Shari
tina said,
October 9, 2013 at 7:11 pm
Hi Shari, yes I have read a lot about Cymbalta and all of the nasty side effects and withdrawal problems. It’s one serious drug. Nothing to mess around with.
How interesting that you had RLS too when you took it. I will definitely look into 5-HTP for my sleep issues. Anything for a good night’s sleep!!! I agree that without deep sleep my muscles are never resting and getting better. Thank you. I will also look at the supplements.
As far as strengthening my immune system goes, I wonder if my immune system gets stronger will the parvo get worse? I have a supplement called Astragalus that I bought to get better. I took it once and I thought I was worse the next day. I worried that it made my immune system over react? But are you saying the make it stronger so it can finally fight off and kill the parvo virus?
I am a vegetarian, have been for 20 yrs so no meat in my diet.
Anyhow, thanks so much for replying!!!!
serenamuse said,
November 7, 2013 at 2:01 am
You know, I never related the Cymbalta to the RLS, but it makes sense. I weaned off the cymbalta a month before going vegan, and after going vegan didn’t have the RLS. It may have been that the Cymbalta was working it’s way out of my system. There is so much that I don’t understand about the immune system. I have found that even though I’ll be exposed to colds and things, that I don’t get sick like I used to. I think my system is too busy fighting the parvo so the other viruses get pushed out so to say.
Jennifer said,
October 9, 2013 at 7:48 pm
I know that this sounds hokey but I have restless leg syndrome and someone told me to put a bar of soap in between my box spring & mattress to stop rls. I laughed at myself as I slide it under there but it worked!!! Still suffering from daily fatigue since my march 2012 parvo infection. at least the numbness has passed.
serenamuse said,
November 7, 2013 at 1:57 am
I actually had a doctor tell me about the bar of soap. It didn’t work for me. I’d be on the floor at two in the morning stretching till the burn felt better than that nerve pain. After going vegan the restless leg stopped. I have no idea why.
William said,
October 9, 2013 at 8:05 pm
Jennifer, do you also have daily fevers? Jenny
tina said,
October 9, 2013 at 10:03 pm
jENNIFER. i WILL TRY ANYTHING!
William said,
October 9, 2013 at 10:45 pm
Tina, do you have daily fevers? Our daughter has daily fevers, rash and soreness…it seems like she gets the rash 1st…then next fevers, then soreness…she has had fever last 3 days….said today she felt a little sore that they seem to come with the fever. Before she described it as muscle or joint pain…but from today, it seems like what she is describing may be fatique when she says “sore”….it is like her legs are too weak to go up the stairs “sore”…maybe just fatigued. She is 16. She had her tonsils out last Wed (hoping it would make her fevers go away – doctors said 70% chance)…however she has had a fever the last 3 days :(…but we are still thinking it will take time. Her inflammatory markers are way high and it will take time for them to decrease. We hope. She had a Ferritin level in the 1,000. The other girl that removed her tonsils took approx. 90 days to get back to normal range. Thanks, Jenny
William said,
October 9, 2013 at 11:12 pm
Has anyone been treated with anakinra? Jenny
Jeepers said,
November 7, 2013 at 2:39 am
Jackie
The same thing happened to me. I have lesions on my brain and see an ms doctor as well, all after I caught parvovirus in 2011. Maybe we can email? I’m curious about your symptoms.
Cathrine Rigali said,
November 8, 2013 at 1:27 am
My daughter,15, has asthma and IBS. She is always sick. Most recently, she had a rash develop on her back that was painful and itchy. The school is giving us grief because of her absences. I have a doctor’s note for every thing but this latest issue. I am starting to think auto-immune. Please, any advice would be appreciated. Now her hands hurt. No known cause
serenamuse said,
November 8, 2013 at 5:26 pm
Has she been tested for Parvo B19? If not, ask them to. However, there is no cure, but at least you’d know why she was having the symptoms. In the mean time, I make sure she has the healthiest diet possible, no meat, no dairy, no packaged processed foods or soda. Think dark leafy greens, vegetables, fruits, grains, legumes, nuts, seeds – 80% raw. Green tea is also good. Check out the book EAt to Live, on the resource page.
julia said,
November 8, 2013 at 4:06 pm
Hi Jackie
I was diagnosed for Parvo in 2008 I have since had on going pain in left neck and shoulder often severe. I get blurred vision in the left eye and on going fatigue if I pick up a virus. My immune system is low so I work hard to stay healthy. I am going for an MRI in two weeks as they want to cancel out msn.
Vanessa said,
December 2, 2013 at 6:21 pm
Hello,
I can’t believe I found this page…for years I have been saying that I have never been the same since I came down with Parvo, but most sites say that it has no long term effects.
5 years ago I noticed a rash to my hand. In only a few hours, the rash had spread to both arms and my chest. It itched horribly, but I just thought I was having an allergic reaction to something, so I took 2 Benadryl and went to bed. I woke up in the middle of the night literally hurting in every inch of my body. It felt like the flu X 100, and I spent the night taking hot baths just to keep the pain (barely) tolerable. The next day I went to the doctor and he ran tests for Lupus and RA, both negative. He did think it was auto-immune, though, so he prescribed Prednisone and referred me to a rheumatologist. By that afternoon, my hands were so swollen, they looked fake, and I was so weak I needed help to the bathroom, couldn’t grip a glass of water, and had to be assisted in and out of the hot baths that were the only thing that kept the pain tolerable..(I was taking a bath every couple of hours round the clock). I was only 34 years old, healthy, worked full time as a nurse, and as a mother of 4 did all the running around that you do with kids…this stopped me in my tracks. In one day I went from that person to someone that couldn’t walk to the bathroom unassisted. I could do nothing without help, I just thank God for my wonderful husband and teenaged daughter…they made sure I was never alone and always had assistance.
Two weeks later I saw the rheumatologist. By this time, the rash and swelling were gone, but the pain, weakness and fatigue were all still in full force. The doctor came in, listened impatiently to my symptoms, and then said “It’s almost definitely Parvovirus, but I’ll run a test to see”, then walked out without saying anything else. Although I’m a nurse, I had never heard of Parvo, except in dogs. I was so confused. The lab quickly came back positive for Parvovirus B-19 and the doctor came back in to say that there is no treatment, and the symptoms would go away completely within six weeks. He started to walk out, and I stopped him to say “What do I do about the pain? The weakness? I am completely helpless right now!” The look on his face indicated that he thought I was exagerating my symptoms, and he just shrugged and said “Nothing you can do…it’s just part of it.” Then walked out.
Still, it was a relief to KNOW…and to think it would be over soon. And slowly I did improve, and although I was exhausted and had chronic pain, I went back to work after 10 weeks. After three days of work, I woke up very sick…I had strep (never had it before). Antibiotics gave me thrush. Two weeks later I had strep again…then thrush. My feet started swelling severely and hurt like the bones were brittle and about to break with every step…doctor said to elevate my feet and buy better shoes. Lymph nodes under right arm swelled to golf ball size…doctor said it was cat-scratch fever (although I wasn’t around any cats). After seeing the doctor for one illness or another about every two weeks over a six month period, I could tell he just thought I was a hypochondriac and took nothing I said seriously. It was embarrassing to see the receptionist roll her eyes at the nurse as she handed her my chart, and the nurse whispering to the doctor in the hall, and the doctor’s obvious impatience when he came in the room. I just said “Nevermind, it was a mistake to come here” and walked out…and never went back.
I became paranoid and refused to mention my symptoms to doctors for a long time. I still struggle with chronic pain, extreme fatigue, depression, and frequent illnesses (like I have no immune system at all). I have a great doctor now an he is treating me for depression and chronic fatigue syndrome…whether the diagnosis is correct or not, the meds are helping and it’s nice to have a doctor that WANTS to get you better, not just get you out of his hair!
Thanks for listening…I know I rambled, but it was just the first time that I didn’t feel like people would think I was crazy!
Shannon said,
January 23, 2014 at 11:07 pm
Wow. I would like to thank you for telling your story. I have been struggling with parvo since 2012. I have armpit pain and swelling of the lymph nodes in my right arm pit. I cannot tell you how much you have helped me to feel better. Though I have been dealing with that particular symptom on and off since I first got sick, sometimes that is my only symptom. It’s scares me sometimes and I worry that it is something else you know? I don’t have insurance and when I got sick I was in the ER twice, unable to walk and swollen head to toe-literally-soles of feet, hands, legs, could barely walk or bend my knees or move my fingers. Also, I too got strep at the same time as parvo and I had a bladder infection-with no symptoms. My test came back positive for parvo only after going to the ER twice and numerous trips to emergency care with blood test after blood test etc. like everybody else on this site. I feel like I have no immune system and get sick easily and for longer than those around me. I am tired a lot. It feels good (not that we want to be sick) to find someone with symptoms so similar to mine. I am so sorry about that doctor. I hope in the future they will figure out how bad parvo really is for adults as I was told that I should recover and have no lasting symptoms as well but here I am. I take vitamins regularly which seem to help and salt and alcohol seem to trigger symptoms if that helps. Alcohol of any amount makes my lymph nodes hurt and my feet hurt. I pay $170.00 a month to pay off my medical bills from when I got sick and it sucks. I hope you feel better
William said,
December 21, 2013 at 4:00 am
This is an update on our daughter Sydney…she is 16 and started with all these similar symptoms 18 months ago….and was very sick almost everyday during this time….joint pain, random pain in different areas of her body, fever 103 lots of days, rash over entire body most days, fatigued, high sed rate and high ferritin. Past parvo virus. Rheumotoid MD was against her getting her tonsils out. Wanted to start her on anakinra injections. We chose to have her tonsils removed hoping that she had a past virus that was dormat in her tonsil tissue…possibility according to research. Since surgery, she had fever of 103 the week after surgery since then she has had NO FEVERS, No joint pain other than 1-2 days, but still has a rash that she would label as a 1-2 on a scale of 1-10 and 10 being the worse. She was a 8 or 9 everyday for 18 months almost! WE CAN LIVE WITH A FAINT RASH AND BEING A 1-2….it almost seems perfect compared to our world over the last year and half! We went to the doctor Wed, she prescribed her Valtrex for 2 months. 1,000 mg 2x day for 2 months to see if it will rid her of any lingering virus in her body. When we left the doctor she wanted to take the stairs to the 6th floor parking garages (12 flights)…she ran up the stairs and not even out of breath. She is back to playing soccer 100%. The sound of her running down the stairs is something we have not heard in 1.5 years…she would have to use the rail and barely get up and down then in the mornings. We would have to literally lift her up in bed in the mornings due to she would hurt so bad that she couldn’t raise up herself. Now she is running down the stairs, back to normal except for a faint rash that no longer itches! She would not even know it was there if she didn’t look for it. Hope this helps someone…it was a miracle for us so far! We have not gone two months this good…normally only had 1-2 good days a week. Jenny
Tam Wedgwood said,
December 21, 2013 at 8:48 am
That is such good news! My daughter was very like yours at around the same age, having caught parvo virus previously. She could barely move or get out of bed; she missed lots of school. Things have improved with diet & pool therapy & she is in college now, but she does still get pain. This tonsil info is well worth knowing! Thanks for sharing and Merry Christmas!
Krista said,
December 30, 2013 at 2:34 pm
I am so happy I have found this website! I am 31 years old and have been suffering from this Chronic-Parvovirus for 5 years now. I did get it from my son who had fifths disease (which is nothing scary for a child but yikes it can cause nightmares in adults). For years I saw a doctor that treated me with pain meds to the point that I was taking 4 Narcos (7.5 mg) a day (which isn’t a ton but was too much for me) on top of the 6 other meds I was on. I had several miscarriages in the 4 years following but let me tell you something. In March of 2012 I said enough is enough when they wanted to put me on meds for RLS (which is a side effect of prolonged pain medication use). I was depressed (on meds for that too), and I went holistic. The only medication that I take is for the sever fatigue which is associated with it and that is Adderall XR (but I also have ADHD since I was a kid). I take a low dose (15 mg a day when I work) and let me tell you this, when I stopped taking all the meds, I did start using Marijuana for the pain/depression/anxiety and low and behold, 6 months after doing that we got pregnant with baby 3 and my symptoms went into remission. I did not have to take anything (no marijuana or adderall) during my whole pregnancy which I wouldn’t have used if I did have symptoms because I would deal with the pain for the sake of my unborn child if I had too, and we were blessed with a perfect baby girl who was born June 26th, 2013. The symptoms have returned full force and this time of year is bad for me, but symptoms are manageable with marijuana use. I am able to be the mother, wife, daughter and employee that I want to be. I still have yet to find a doctor that specializes in it, but for now, I am taking control of my health. Eating healthy, growing enough veggies in the summer to last all winter, taking Emergen-C Immune vitamin pack everyday followed by my marijuana use at night before bed. Marijuana is a natural anti-inflamatory and reduces pain. There is a difference between someone who uses this for medical reasons. You do not have to smoke a whole joint to reap rewards. A small amount goes a long way and you do not have to get “high” to feel the benefits. When the medical community has failed me and I was addicted to all the medications they had me on I took a stand and said I was done! All those pills will tear up your system! I just had a full blood work done and for the first time ever, all my blood work was perfect except my parvo numbers are still high (which is to be expected) but I feel great and you learn to deal with the pain in different ways. Do not be so quick to take pills for every symptom because those pills can cause other symptoms as well and make it worse instead of better. I am not saying you have to use marijuana, but look at your options. Do not give up! I have 3 children and work full time and am no longer plagued with the inability to get out of bed or off the couch which I was and caused me to take a leave from work at one point for 3 months. Stay positive, find your faith, and take control of your health.
Shannon said,
January 23, 2014 at 10:35 pm
I was diagnosed with parvo in September of 2012 and I still have symptoms of it today. I get pain in my feet, my hands, I am tired, I struggle with anemia and when I get sick I am down for the count longer than those around me when they are ill. Some things that I have found that help me to feel better are: not drinking alcohol. Any amount seems to trigger the parvo to flare up even if I have one drink. My feet will start to hurt, my legs will swell, when I get in the shower my fingers become wrinkly immediately, which is what happened when I was first diagnosed and the parvo was really bad. I get pain from a lymph node in my right arm pit (also something that comes and goes and has been here form the beginning). So, don’t drink any amount of alcohol. Also, taking a multi-vitamin daily helps a lot as well as vitamin d and vitamin c. I take lots of vitamin c and I think that helps me to feel WAY better. Parvo makes it easy to get sick with colds easier so I always find myself having to fight things like that off sometimes semi-regularly. Vitamin D I think helps, especially in the winter months when I don’t get enough sunshine and also gives me energy. Also, enough sleep. If I don’t get enough sleep the parvo seems to be worse. Being active if you can helps to get your body going but do what you can. Also eat healthy, and maintain a routine if you can. Additionally, iron supplements may help, as parvo causes anemia, but also b12. But to simplify it if I drink alcohol, it will cause foot pain immediately as well as arm pain. When I sleep my right arm falls asleep from parvo. Too much salt is also bad I noticed and the amount will vary from person to person but sometimes all it takes is one hot dog for me. I get intense itching randomly of my hands and feet and on my back or head as well. Today is Jan 23, 2014 and here I am still with it. I feel for everyone here. I hope we all get better soon.
Todd said,
January 1, 2014 at 8:35 pm
Happy New Year ~~~ 2014!
Let’s hope this year brings less pain, less discomfort, good health and a cure for Parvo B19. I’m a newb to Parvo B19 — 42 year male. I have tyically been athletic & active throughout my life.
I have recently been diagnosed with Parvo B19 after a multitude of blood work-ups, sonograms, X-rays, MRI’s, etc etc, and aparantly have had it for some time now. As I’m sure most of you know, the test doesn’t indicate exactly when I became infected, but clearly showns I have been. We suspect it was contracted during the years my daugther was in day-care, she is now 8. (So .. probably 4-5 years ago). Thankfully my primary doctor elluded to the possibility of Parvo on the second visit, and the blood work confirmed it.
A severe leg cramp 4 weeks ago (the night before Thanksgiving Nov. 27, 2013) which triggered a series of extremely painful muscle and joint pains, which have continued to be random, intermitten, and have different degrees of soreness and intensity. ; Calf, thigh, chest, abdomen, back, shoulder, and forearms .. mostly. Fun stuff.
This is complicated by unusually high blood pressure that has been lessened by some BP meds. (Cozaar & Procardia XL at the moment), but does not seem to want to drop below a certain level
I can’t confirm but suspect that Parvo is responsible for some ailments I have had in the last few years — Vertigo, Bell’s Palsy, mild arthritis in my left foot & anckle, high blood pressure (from pain) .. etc etc.
I am thankful I came across this website because I have read alot of similar stories.
The symptoms seem to worsen at night … when the pain is severe and I have been taking 400mg of ibuprophen, and 0.50 mg of “xaanax” to put me to sleep. I am trying to not rely on the pain meds .. but if I didn’t some nights… I’d lie there in pain & ultimately become a zombie.
I am encouraged by some of the insights that folks have shared and am sincerely comsidering going vegan to help myself mitigate the disease symptons. I have too much to live for and am not going to let this virus bully me into submission. Bullies suck.
I plan on seeing a Rheumetologist within a few weeks if my primary doctor and I agree its time to move to the next specialist.
I sympathize with your pain and discomfort, thank you for sharing in your words and insights.
Shannon said,
January 23, 2014 at 10:46 pm
I have been dealing with Parvo since Sep of 2012. I still deal with it today (Jan 23, 2014) Some things I have found that help: not drinking any amount of alcohol. If I am having no symptoms,as they come and go, this will trigger them. My feet and legs will hurt, my right arm always seems to be the worst, as well as lymph node pain that comes and goes and has been here since the beginning. Also avoiding cheese and salty foods as they trigger pain. Itching that can be intense on the soles of my feet after all this time-this comes and goes randomly. Taking multi-vitamins and lots of vitamin c and vitamin d. I have found that after taking these I have started to feel like my old self a bit but I still must maintain regular sleep. Also regular sleep schedule seems to help a lot and, I seem to need extra sleep sometimes. The pain can be intense and walking can hurt, it sucks. I would suggest abstaining from alcohol and salty foods and taking vitamins regularly as parvo, absent of all the symptoms, manifests itself long term as chronic anemia, which I am sure you know. I am not taking an iron supplement on top of the multi vitamin but iron rich foods like kale, red leaf lettuce and beets help. I hope you feel better soon. It feels better to know I am not alone. It’s hard to describe to those around me since they don’t have what I have and it keeps going on and on. Sometimes I feel fine, then my feet hurt of my lymph nodes hurt. It sucks. I wish it would just go away.
Barb A said,
January 17, 2014 at 4:03 am
I just moved to the Vancouver, WA-Portland, OR area and need a new provider that understands Parvo?
Shannon said,
January 23, 2014 at 10:49 pm
I ended up going to Providence when I was diagnosed. The hardest part is, I think anyway, is that getting it as an adult is way worse. I went to the urgent care in the Gateway district and they figured it out. Provence seems good though. The problem is, it has gone on for a long time for me-since 2012 and here it is 2014. That’s what sucks. Hope that helped
Rachellaf said,
January 20, 2014 at 10:08 pm
I am a 36 old women living with parvovirus since mai 2013 ….i am so happy to see That i am not crazy i have random artritis pain all over my body …mots ankle , knew ,hips add also muscle pain ….i also have lymps node and my neck …
Rachellaf said,
January 23, 2014 at 4:01 pm
Do any one have low white cell count ?
timtak said,
September 8, 2016 at 12:05 am
Just got my yearly detailed health check back which says I have low red and high white blood cell count. As noted, Parvo hangs out in bone marrow causing anemia.
Rachellaf asks if anyone has low white blood cell count but this paper
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4238837/
says that in patients with Parvo and encephalitis (inflammation of another membrane, around the brain) 42 percent of patients had raised white blood cell count and the same percentage were anemic. Lowered white blood cell count seems to be rare.
Shannon wrote
> iron rich foods like kale, red leaf lettuce and beets help
Thanks.
Shannon said,
January 23, 2014 at 10:51 pm
I get lymph node pain as well that comes and goes, mostly in my right arm pit.
Rachellaf said,
January 30, 2014 at 9:42 pm
Thank you Shannon : me it’s in my groin leg…..i hope it Will go soon…i am very sick of all That pain ….thank good at less i am not tired because i have 3kids 3-4-6 ;-)!
Rachellaf said,
February 5, 2014 at 5:53 pm
Did any one have thyroïd problem ….since friday my thyroïd is swallowed …..i have a ultrasound feburay 10 …..let see ….i am so sick of That parvo …every month i have something new…. It’s very stress fuel!!!thank you
Mélanie Bédard said,
March 11, 2014 at 1:23 am
Thank you for this blog. (Excuse my English if it’s not perfect, i’m a french Canadian from Québec…)
I’m happy to have foung this blog, because there’s is not much info on it in french and no french blog either to share experience on it about the parvo. My 2 years old daughter brought back the parvo from day care and gave it to me with a kiss… When I went to see my doctor because I could not work no more, suffering to much from joint pains, I suggested to her it could be the parvo. Sher didn’t think so, thinking more about RA. I had to demand to have blood work done for the parvo and guess what, turned out positive.
I’ve been struggling with this disease for «only» two month now. Reading you guys, it seem to take for ever to get through it. My rhumatologist said it would last from 6 to 8 weeks. There is still no signs of improvement yet, no in fact, it seems to be getting a little bit worse everyday. What is the «average» time people get over the parvo?
I’ve been prescribed many pills and nothing seems to work on me. No relief at all. I’ve been taking Dilaudid (more powerfull than morphine) and it does not help. Everybody who knows Dilaudid are very surprised that it does not help. Is the parvo resistant to any medication? I understand it can not be treated, but can we get relief with a magical pill?
thanks again to whom ever will respond and sorry again for my not perfect English.
Bonne soirée
Mélanie Bédard said,
March 12, 2014 at 5:57 pm
Well, how encouraging…
since no medication gives me relief from my aching joints and now muscles or nurves, I don’t know, and having to take care of my 2 and 5 years old, I contacted my rhumatologist again hoping he would prescribe something else, at least to try something different…
I explained to him that I’m at my 8th week of very painful joints, cannot work or do anything else, I’m starting to get depressed because I see no signs of it getting better.
He just simply said to tough it out and it should be gone pretty soon since it lasts 6 to 8 weeks… for him it’s not possible that it lasts longer and if so, it must be something else. He should be reading you guys. How encouraging to have a specialist that doesn’t seem to understand the parvo that much.
Let’s hope he’s right and tomorrow morning, it will all be gone (what a nice dream)
Leslie said,
March 13, 2014 at 3:01 am
Hi, Melanie… So glad you found this site because it will validate your many continued symptoms and hopefully educate both you and your doctors that his virus can persist and cause a host of other conditions other than passing viral arthritis.
In all the reading that I have done on this site, there only seems to be a few of us that complain about the virus affecting our nerves. Would you mind elaborating on where your nerve pain is and how it manifests? I really struggle with this.
Thanks so much!
Mélanie Bédard said,
March 13, 2014 at 12:38 pm
Hi Leslie,
here’s my symptoms story, hoping it will help.
10th of january I start to have flu like symptoms but not as bad as the real flu and it lasted two days.
Two days after that, my little girl has the red cheeks and rash on her arms but doesn’t complain of anything and seemed to feel good. The next day, my entire body is red except my face, hands and feet. It didn’t itch or burns. It went away after three days and that is when the joint pain began for a week. Hands, wrists, knee, feet hurts. At first I felt tingling in my right hand and forearm. And I couldn’t stay still standing up because it would pull so bad from the back of my kees down. It would get better if a walked. At my daughters day care, they tell me another girl had the fifth desease and that is probably what Annaelle has to. I went to see my doctor because I couldn’t work and needed a medical leave. She didn’t believe I had the fifth desease too because I didn’t get the red cheeks!!! She thought it was RA and asked so I be seen by a rhumathologist. I insisted on having the blood work done for the parvo anyway. Came out positive.
Than a week and a half of being absolutely ok. I thought it was gone. It had left like that.
We then leave on a planed cruise to get away from the cold here in Québec for a week. Well I don’t know if it was the nice heat of the Caribbeen, but my symptoms started slowly coming back.
It’s came back worst than ever. Now all of my joints were very painful. From my jaw, neck, shoulders, elbows, wrists, hands, hip, knees, ankle, feet and spine. The joints don’t seem to be swollen but I cannot remove my ring anymore.
Now lately, when I’m laying still on my back, I feel something that is pulling from the buttom of my neck, goes down the front of my shoulders to my elbows. I THINK it’s my nerves because it hurts even when I’m not moving. Maybe shoulder tendinitis? Dont know. Painfull enough to keep me awake at night. Also feel it while standing up. I also feel the same pain that goes through the front of my hips and down through my knees. Is it that my joints are a little bit swollen and compress the nerves??? My condition does not seem to be getting better but slowly getting worse.
After I had spoken to my rhumatologist yesterday and wrote the post on how I was discouraged, well he called back later to say he would prescribe me a muscle «relaxant» ( relief). I’ll try it to see if it works.
I hope Leslie this will help you. What are your symptoms? I must admit, even though this blod is very informative, it’s a bit discouraging. The doctors had told me it was once in a life time deal. You had it once and never again and would last only a few weeks. Unfortunately, I see here it’s not true and they are not well informed. Maybe are you guys the unfortunate exeption? And that most of the people who get the Parvo will be able to fight it?
Don’t hesitate if you have other questions. Take care
Mélanie
Rachel said,
March 13, 2014 at 2:39 pm
Salut Mélanie je viens aussi du Québec mais ça fait 6ans que j’habite l’Ontario …….si it veux envoye moi ton imail et je te racontre mon histoire j’ai attrapé parvovirus en mai 2013 …..et j’en souffre encore !!!
Mélanie Bédard said,
March 13, 2014 at 5:59 pm
Salut Rachel,
oui je serais interessée à connaitre ton histoire, voici mon mail
meloubedard@hotmail.com.
Au plaisir de se partager nos histoires, mais c’est rien d’encourageant de savoir que t’en souffre encore…pauvre toi.
Jeepers said,
March 13, 2014 at 1:14 pm
Leslie…were you looking for me on here at one point? I replied but didn’t hear anything back. If so I can give you my email. Hope you are doing ok.
Jeepers said,
March 16, 2014 at 12:46 pm
Hi. How long have you been dealing with this? I have brain fog and was wondering how you came across Wellbutrin? Did it clear up right away? I’m very curious. It’s 3 years this month that I caught this horrible virus. Although it’s gotten slightly better it’s far from gone. Any help is appreciated!
Karmen said,
April 10, 2014 at 10:36 pm
I just came across this blog while Googling parvovirus. My symptoms started two months ago, and looking back, a month before that, my daughter (almost 10 years old) had about a month of malaise and knee pain. Maybe I got this from her.
It started out as red, inflamed finger joints. It’s a guessing game as to which body part will hurt each day, as it lasts for about 3 days each part. Never a day with no pain, except when I was on prednisone. I currently have a prescription called in and am going to pick it up today. I tested a 5 for parvo, but I have yet to have my follow-up appointment (2 weeks from now).
For me it’s my right wrist, all my finger joints, left knee, both ankles, and neck and the bottoms/pads of my feet. No fatigue, no rashes. I feel like I’m going crazy here. I really hope that if this is caused from parvo, that it ends soon. I’m a single mother and self-employed and can’t take time off work.
Thank you for sharing your thoughts, and I’m sorry for your pain.
ircmate said,
April 12, 2014 at 3:15 pm
I have a question for everyone posting here: I have only the positive IGG antibodies for Parvo B19 but not IGM. Do you people that are suffering from chronic issues related to the virus have positive IGM as well as positive IGG? It’s been suggested recently that I have a possible MCTD disease, but I’ve read Parvo can affect people for years. Just not sure if you have to have IGM antibodies chronically active for it to be a possibility. Any insight would be appreciated.
Sara Richards said,
April 14, 2014 at 6:38 pm
My kids brought this lovely thing home to me two months ago. I got the rash end of february and a month later the joint pain started. Is this how it happened for you. I live my life terrified and miserable. I just pray it goes away. The doctors refuse to believe this is what it is, but when all the blood tests come back normal and I was fine before I came in contact with fifths from my kids… cant be coincidence. Not trying to commiserate.. just trying to understand. Thanks.
serenamuse said,
April 14, 2014 at 6:47 pm
I would definitely tell them you want to be tested specifically for active Parvo b19, not just the antibodies that show you have been exposed to it. They won’t have a solution, but at least you’d know what you are dealing with.
EmilyBanks said,
May 20, 2014 at 4:49 pm
Ok. I had parvovirus b19 about 7 years ago I was in the hospital for over a week until they finally figured out what it was. It is the most horrible pain I have ever been in. About a week ago the same exact symptoms started again. Hives, Severe joint pain, swollen joints, couldn’t walk, the only way I could describe it to people is that it feels like I am trying to walk on extremely painful bubbles. I ended up in the emergency room and they slapped me with some pain meds and sent me home. I went to my regular doctor and explained to him what was going on and that I had parvo-b19 7 years ago and he told me the same thing that the ER did. “Its impossible to get the parvo-b19 virus again, its just like chicken pox, you have it once and you then have immunity.” But I’m telling you this is EXACTLY like 7 years ago and I can not get ANYONE to freaking help me! Any Advice?? Oh and of course I feel like I am itching from the inside out!!!!!!!!!
serenamuse said,
May 21, 2014 at 4:01 pm
The ER doctor was uninformed. Chronic Parvo is common knowledge now, at least among those who do their homework.
EmilyBanks said,
May 21, 2014 at 5:21 pm
I figured that out once I found this page. The only thing is that my General Physician said the same thing. When I asked well what is it then he said he had no clue. I demanded this morning he refer me to an infectious disease specialist in Winston Salem and thank goodness he is doing it. I am so glad that I found this page! I am so saddened that so many people suffer from this but I am glad I am not alone!
ash said,
May 21, 2014 at 2:16 pm
I’m a 21 year old female and I was diagnosed with this lovely illness a few months ago. About a week before i was diagnosed, I had a low-grade fever. I honestly felt like I was dying. The fever went away, but a few days later when i got out of the shower, I had this lacey rash all over my body. I thought I was having an allergic reaction to the new toothpaste that I had just used. Coincidentally I had my yearly physical that morning. My doctor did not like the rash, and immediately had me take a blood test for parvo. The next week was hard. My skin was burning hot, I felt weak, and my hands and feet were itchy. A few days after the rash I developed some SEVERE pains in my wrists and fingers. It hurt so bad that I would wake up crying and even doing the simplest of things was nearly impossible.
I was told it would take about six weeks for the virus to run it’s full course. What a crock. Every couple of weeks I become sick with cold-like symptoms. Some days I feel “parvo-ish” (no other way to explain it) where my hands and feet become swollen and itchy and my lymph nodes get swollen. I just feel tired sometimes. Thankfully the arthritus symptoms are not too bad anymore. Still, I’m too young to be feeling the way that i do. This is a serious, serious virus and I hope someday they come up with a cure or vaccine to prevent this. I don’t think my body will ever feel the same as it did before parvo.
serenamuse said,
May 21, 2014 at 4:10 pm
I’m really sorry you are going through this. We have all been there. No it is not likely that your body will ever be the same, but trust me, it can be very good and in some ways better than most of the folks around you if you learn (and it takes time) how to deal with it. For me it means cutting out all processed foods, just eating vegan (have done for over five years now) mostly raw leafy greens (at least two big salads a day) with legumes, nuts, some tofu, lots of water, no soda. Clean clean clean. And rest. Pull back from the world and let your body fight. I managed to get an MFA post parvo, I teach at three universities/colleges, have an art career, work out three times a week, have a family. I do though let my husband run the errands, I miss school events. I often don’t have a clean house or meals prepared. I say no to a lot and only do what is most important to me. When I feel my body running down, I stay home, rest, watch old movies. You will figure out what works for you.
Tina said,
May 29, 2014 at 5:06 pm
Hi, has anyone here been treated with Lyrica? I have been on it at a low dose, just 75mg at bedtime for 3 months now. I do have to admit that it’s helped me soooo much. I was diagnosed with fibromyalgia after having Parvo for 6 months. Whether or not anyone believes the diagnosis, I do have all the symptoms. Even the TMJ pain, painful periods, insomnia, etc. But I had those way before Parvo. It’s the body aches and pains that came with the Parvo that never went away.
Just wondering what medication people have tried for this? I am also taking tizanadine each night to help me sleep and help my muscle pain. I have to say that a high dose makes me too sleepy so I open the pill up and pour half the powder out of the capsule.
Kathy Lewis said,
July 9, 2014 at 5:03 pm
Hi, I am wondering if you can explain what the rash on your hands actually looks like or if you have pix of it? I have been dealing with “mystery” illness since 2006 now and my most recent symptoms are a new rash on hands and now have been diagnosed with 2 nodules on my lungs… I am in the Redlands area, so when I saw you were referred to Loma Linda it really caught my attention even more!! Thank you…
serenamuse said,
July 11, 2014 at 4:01 pm
Sorry I don’t have a pic. Just sort of blotchy, prickly, itchy.
johnocal said,
July 11, 2014 at 10:49 am
So three months ago i returned from spain with a slight bug like a mild flu. i didn’t think anything of it as i had been on a weekend away with the guys and thought i was just run down and had holiday blues. about 5 days later i woke and had a rash all over my body and arms and was shocked about how red it was and how it had come on from the day before when there was no sign at all of a rash.
I went to the doctors and they said that i was either allergic to penicillin (i had taken it the week before for a moth infection) or i had Scarlet Fever! i doubted it was penicillin as I’ve taken it throughout my life as most of us have. The doctor gave me antihistamines and said come back if it gets worse.
the next day i woke up and went to brush my teeth, when i stood at the sink i felt a massive build up of pressure in my lower legs and could not stand still, i had to move to alleviate the pain. went to the doctors and again was told to go home if it gets worse come back.
the following day it was ten times worse and i decided i had to go to the hospital as i was worried about a blood clot.
they did a blood test and the normal count for someone without a clot is 200 and mine was 2000!!!! they did a scan and turned out i didn’t have a clot but they said i had inflammation of my achilles tendons and other areas of my legs… still no explanation as to why. since then i have been to the doctors a further 6 times and it wasn’t until the last time that they did a series opt blood tests and it came back positive for Human Parvo Virus.
I don’t think my symptoms match the illness and i may have something else as well.
i stated getting red marks on both legs then they would turn in to deep and hard bruises but there was never any trauma to cause it.
Today i still feel fatigued, and my ankles swell up every day, even wearing socks is stopping the blood flow and is really affecting my working life.
anyone else had anything like this?
Randi said,
October 7, 2014 at 5:52 am
I had a very similar start to my journey with parvo virus. I came down with flu like symptoms and just hoped they would go away. A few days later I developed a rash all over my chest and arms. The very next night I woke up with extreme pain in my right arm and ended up in the e.r. I also had my d- dimer test come back at around 1600 indicating a blood clot but they couldn’t locate one. Also my liver enzymes were around 500 which is very high. The extreme pain finally improved but I’ve had chest and arm pain as well as a slew of other symptoms for the past 9 months since then. A few weeks after the hospital visit I was diagnosed with parvo virus. Your story sounds so much like mine. I just can’t get the pain, dizziness, headaches, numbness, etc to go away and I keep losing weight. I’ve lost about 50 lbs since December ’13. I’m so sorry you’re experiencing this too and hope you get more answers than I have. I’m seeing an infectious disease doctor soon so we’ll see what they have to say.
William said,
July 26, 2014 at 12:11 pm
Good morning, it has been a while since we have written. Our daughter of 16 was having same symptoms as most…rash everyday, pain in joints everyday, fever of up to 103 almost everyday. Was treated by Rheumatoid specialists for a year and half. Tried the steroids, which temporarily helped…and was recommended to start trial anakinra for Stills disease. She had every test possible and even ruled our leukemia. We met another mother with a daughter with the same story but unfortunely had trial drugs which led to complications, ended up home schooled, dropped out of sports, had a few surgeries due to trial complications from the drugs, and then had her tonsils out and was cured as a recommendation from the National Health Institute. Sydney also had her tonsils removed in Oct. 2013, 9 months ago and is 100% symptom free. She continued with symptoms very slightly for approx 2 months. Her doctor as well put her on Valtrex for approx. 6 months (1,000 mg 2x day). The idea was that she had a past infection (tested positive for a past parvo and a past strep infection) it could have been either one…wherein a past virus got trapped in her tonsil tissue and was dormat. She lived through hell for a year and half and was at the point of giving up! Thank God we met this other young lady with this success story! And thank God we went against our doctor’s judgement and got the surgery! She is living a normal teenage life now…after missing out of the 9th and 10th grade! You can email me at hilburnproperty@yahoo.com or feel free to call me at 843-442-6386….we would love for someone else to get relief especially if you are young enough and have not already experience nasty complications that are permanent from trial medications. Jenny
Rebecca Jarquin said,
July 27, 2014 at 3:05 pm
Jenny, I am so glad you were able to find a solution. After contracting parvo, I developed an autoimmune disease as a result called antiphospholipid syndrome. Years of drugs and no relief. I too found an alternative solution through an intense detoxification of my system using herbs and I am off all medication and living a good life. It is encouraging to hear that there are people that are thinking outside of the box because the side effects of medications are devastating. Thank you for sharing your story and I am so happy for your daughter.
Rebecca
Jonathan Beggs said,
July 29, 2014 at 3:56 pm
Hi, not sure if you check this
I’m on week 5 of parvo and I’m 40
Coach am fit and it’s beyond frustrating. I’m feeling better but still sore and my knees are very limiting, plus night sweats through everything, I hate it.
How are you know, any advice would make me feel better. Thnx
Jonathan Beggs
Caledon Ontario Canada
Missy said,
August 17, 2014 at 7:20 pm
I think alot if my issues I am having are from testing positive for parvo. I had emergency surgery for a dermoid cyst 2 years ago and immediately after surgery I started swelling and having ra symptoms. My C serum for inflammation was very high and it took 2 months for me to get back to somewhat normal
Dana Nelson said,
August 19, 2014 at 5:51 am
Dana Nelson
Aug. 19 2014
Hi to all, I was diagnosed around 18 years ago with Parvovirus. My daughter was in Nursery school and I worked there at lunch time. There was a break out of Fifth Disease and I was one of a small few that caught it. It was so horrible words can express. I was so very sick for two years that it changed my life. I have yet to recover!!!! At this point the Dr.’s say it’s Fibromyalgia and some say that its still Parvo? No matter what it is my body has not been the same since. Strange aches and pains all over. Dry eyes, skin sensitivity and headaches non stop. My body being hypersensitive to pain!!! Numbness all over for no reason etc….. All I can say it’s become a way of life for me. I have my ups and downs but I just hang in. It sucks but, there are people with much more horrible diseases. I just deal!!!!
serenamuse said,
August 19, 2014 at 6:03 am
I hear you. Our stories are similar. My body never responds to things like other peoples. I had a facial on Friday, something I have not done in well over a year. It was nothing special, just the standard smoothing lotions and masks and a few extractions. I had a reaction to their face mask (this was at Massage Envy) by the time I got home it looked like I had a serious sun burn on my neck chest and forehead. I could not sleep for two nights because the burning and itching was so bad. I am now pealing like a snake shedding skin. Won’t be doing that again! It never occurred to me to worry about this.
Vicki long said,
August 23, 2014 at 1:58 am
I was diagnosed with the parvo virus last year and have been suffering with Severn hand, knee , ankle, and foot pain. My pain management Dr just shrugs his shoulders and gives me Norco and Neurontin. The rheumatogist does t seem interested in evaluating me. Feel lost and tired of feeling like crap. Having a flare up this last week just feeling blah like I have a sinus infection a lot of joint pain. Just want help and direction. Not norco and biofeedback to deal with it. Grrrrrrrr
Jake C. said,
August 28, 2014 at 12:31 am
Wow this explains so much for me. I have had so many of these symptoms and just brushed them off but hard to do now. Dr never tested for parvo until last week and I tested positive. Now reading all these comments there is no doubt in my mind I’ve had this virus for a number of years. I’ve lost several jobs because I just couldn’t get out of bed. I’ve been a cook for years and the rash has stopped me from going into work several times over the years for fear of spreading something to my guests. This time started as rash and slight fever. Doc gave me antibiotics rash went away but then severe joint pain set in. Lower back pain is unbearable. Headaches out of this world. I get goosebumps and then hot flashes and the dizziness and blurred vision is worse than ever. Please help I think my Dr thinks I’m crazy and making this up.
monika spinnato said,
September 18, 2014 at 1:39 am
I wonder if I have this. The 2nd wk of August in 2013, my daughters & I flew into Tampa and stayed there and also Sarasota for ten days. I came home but prior felt an annoying ingrown hair feeling in my rt ear. Long story short I have nvr been more sick, fatigue, diarrhea. . Sleeping anywhere from 2 to 5 days in a row or at times up for 2 or 3 days. (Completely abnormal based on my several crippeling medical conditions and not able ro last a half of a day without going to bed and getting atleast 10 hrs. Of rest)
Once returning to my home in Baltimore, Md as mentioned till March 2014, I had been 2 john hopkins er 2x franklin square er, my dermatologist which first thought as excema dermatitis prior to March when both my feet broke out to impetigo in March due to my rt ear spreading to my left ear, feet rash still being a problem and along with these 3 er visits, 2 dermatologist visits, internal med. Doc and pain & rehabilitation. …all referred to John Hopkins infectous Disease….as well as my dentist who pulled 9 teeth in one yr. I moved to Florida with my 2 daughters tgus past July and a whole new story began. What do u think? I have been to 4 er visits since the move and do not see infectous disease till the 29th. Infectous Disease did no culture or biopsy in Baltimore and said as prior er visits that they were lesions or ulsers and issued same labwork as pain and rehabilitation doc. Did. I am dying and now it has spread to 7 plus other parts of my body. Without sounding crazy like these er pa and docs make me feel. …I will wait to comment on my move to Florida and what I have experienced and believe it may be. Thank u for reading. Monika
Jennifer said,
September 23, 2014 at 11:16 pm
Just wanted to say I am thankful I am not alone. I have SUFFERED since 2003, with this awful autoimmune disease Parvo. The MD’s have not helped. I just keep praying. I suffer terrible agonizing hellish flares. I do not think this stuff will ever go away till I die.
Jennifer.
Randi said,
October 7, 2014 at 4:42 am
I too was diagnosed with parvo virus in December 2013 after a few weeks of fever, chills, headaches, chest, arm, and stomach pain. The fever and chills went away but everything else has stayed the same. I also developed heart palpitations and get exhausted very easily. I can’t go hiking, biking, or really excercise at all without having a ton of pain and exhaustion. A chiropractor helped for a short time but symptoms quickly came back. I’ve been checked by a gasto dr, a cardiologist, and a homeopathic specialist but haven’t gotten help yet. I’ve started developing pins and needles in my arms, hand and feet as as well as a lot of dizziness. It’s also super painful to eat and I’ve lost 50 lbs in the last 9 months. Reading similar stories on this blog has inspired me to chane up my diet and see an infectious disease doctor. I just feel bad for my little kids because I haven’t been able to be the mom I was before I got this virus. I’ve never had any health issues in my 38 years until now and it’s been super tough!! Thank you for all your stories and inspiration!
Keri said,
October 11, 2014 at 5:14 pm
Following
paizleysun said,
January 16, 2015 at 6:57 am
Glad I found this blog! I have a great internal medicine doctor who believes something’s up with me so he ordered a bunch of tests. Found out today that I have chronic parvovirus and mycoplasma. Last August there was a reactivation of EBV. So there are 3 viruses I have to live with. I have had a 3-level cervical fusion which will need to be revised. I have arthritis in my SI joints, both wrists, ankles, lumbar spine as well as paresthesias of extremities, trunk and face, neuropathy, bilateral shoulder and knee pain, migraines, digestive issues, TMJ, and fibromyalgia. Even had to have a hip replaced due to avascular necrosis. I don’t get a rash but I do get “idiopathic” hives all over my body. The list goes on. No treatment started yet. I can’t take Methotraxate, Plaquenil, or sulfasalazine which I was prescribed in the past by a rheumatologist for RA that I didn’t have. Anyone having any luck with medication? Let me know what works so I can discuss with my doctor. Thanks!!!!!!! 🙂
alfie said,
January 17, 2015 at 10:50 am
Hi all I was recently prescribed LDN Low dose natrexol , for on going Parvo. (seven years) and I have got major benefit from taking this drug. Also the possible side effects are minimal.
Michele said,
February 2, 2015 at 11:09 pm
I’ve had Fifths for about two weeks now. I’m also 39 and it hit me rather hard. Caught it fromy nephews who barely even showed signs of any illness or fatigue – just the rash.
Joint pain and fatigue are my two stmptoms now that the fever and rash have passed. I saw my massage therapist today and she did lymphatic drainage on my for two hours. What a difference! The joint pain is gone for the moment and my fingers and ankles are normal size for the first time in at least a week.
serenamuse said,
February 24, 2015 at 6:13 am
Good to hear. Massage sometimes works for me and sometimes makes it worse. You just have to keep trying to find what will work for you.
Julia said,
March 25, 2015 at 11:22 am
I was recently prescribed LDN and it has helped immensely. Been in touch in the past, seven years on and they finally give me something that actually helps. Staying off the gluten, and like you maintaining a super healthy diet.
crystal said,
March 1, 2015 at 9:02 am
I feel not crazy now after finding this blog. I’ve been suffering for months with doctors brushing off my symptoms. For a month I couldn’t walk bc of my knees, a few of my fingers were swollen and blue 24 hours a day. I’m 34 and was walking around hunched over with my hands in a ball like I was 80. Id sit down and would be unable to stand without help. At night id be unable to get out of bed in time to make it to the bathroom. Doctors told me to stop doing squats when i work out and maybe I broke my fingers (all wrong). My 3rd doctor trip I lost it, I was so angry that I knew it was serious. They did blood work, came back Lupus. They sent me to a specialist that did more blood work that came back parvo. they just say it will go away, run it’s course. Gave me some naproxen, ultram. My legs feel better but now my wrists hurt all day, my ankles hurt, I sleep all the time. I get tired doing every little task. My other fingers are swelling. It just feels hopeless. I was perfectly healthy one day and then I wake up another and my life has changed. I’m a single mom, work on my feet 9 hours a day and this is just too hard. Noone in my life understands. It does give me peace knowing it’s not all in my head and I’m not being a hypochondriac over dramatic woman though like everyone is making me feel.
Paula said,
March 25, 2015 at 2:43 am
Hi I’d like to be a member of this. I’m sure this is what’s going on with me. Eye trouble, anyone?
Julia said,
March 25, 2015 at 11:23 am
Eye trouble was a common symptom for me, barred vision and eye strain.
Zachary Headrick said,
April 9, 2015 at 6:50 pm
I was diagnosed with pink eye a week or two before i started developing the joint pain. I didn’t think anything of it but it didn’t feel like any pink eye I had had before, it was more of a light sensitivity in one eye and a throbbed pain behind my eye.
Julia said,
March 25, 2015 at 11:20 am
I feel your pain. I recently saw a specialist who deals with chronic fatigue post parvo and he has put me on LDN and it has made a remarkable difference. However, my life style is super healthy, and I took herbal medicines alongside it for around a year before it worked effectively. No gluten, (breads pasta, cake etc..barley, wheat, oats and rye) are all out, Alcohol is kept to a minimum. You will get there, it does take a long time, but when you feel a little better, you will really appreciate your health.
Zachary Headrick said,
April 9, 2015 at 6:44 pm
Hi there, my name is Zachary, I am 29 years old, I first experienced symptoms in January of 2014, it started with dizziness and joint pain, I worked on an assembly line and I always had a heat rash of some sort so I’m not sure I would have noticed the rash if I developed one. My joint pain started in January and by late March I was confined to a wheelchair, I lost my ability to walk while watching my son learn how to. I had clean MRI of the brain and spine, normal nerve conduction yet I was pretty much paralyzed from the waist down. I had neurologists telling me it was some form of conversion disorder from depression, yet I have no traumatic event or anything of the sort that would explain that. I convinced my PCP to run the test for parvovirus b19 after reading about it and I tested positive for being exposed to it. My neurological specialists don’t seem to know much about it, they don’t seem to want to leanthat direction and keep saying it’s just depression, I guess they have a hard time admitting they are wrong but I have a hard time believing I am in this much physical pain because of a mental condition. I was wondering what kind of specialists you all have seen to get your diagnosis. I can’t work and my LTD runs out this fall. SSD refuses to approve me without a diagnosis. I am terrified, it’s hard for someone of my age to get approved even with a diagnosis. I was also interested in some of the treatments you all have mentioned, especially this bee venom therapy, it might sound crazy but it sounds a lot more appealing than ig treatment to me. I have been doing Physical Therapy for eight months and I’m now out of the chair but I have to use forearm crutches and lfo orthotic braces because my ankles are limp. I just want someone to recognize that this is most likely responsible for my symptoms so that I can get treatment and get on with my life. I would love to get well enough to work again. I hope you all can point me in the right direction, I was beginning to feel pretty hopeless until I stumbled upon this forum. Thank you all so much I hope to hear from you all soon.
P.s. where is everyone located? Is there a regional relation to this? I am in Chattanooga TN
serenamuse said,
April 9, 2015 at 7:18 pm
An infectious disease specialist is the one that seemed to know the most about Parvo B19 for me. You might try that. As far as I can tell it is not regional. It is airborne, and often spread though children, day care etc. When they get it, doctors usually refer to it as slapped face for fifth’s disease. I’m sorry you are going through this. It is very frightening. I find that as soon as I feel I have a handle on it, my body starts responding in a new way and we start from square one. Eat the most nutrient dense food you can to give your body fighting power. Rest, exercise in moderation. If you don’t move you will become too weak to know when you are feeling better. Best of luck!
Jonathan Beggs said,
April 9, 2015 at 11:07 pm
Get a blood test for parvovirus asap. Get a diagnosis. My story is similar. I’m 40, and was mountain biking one day, a rugby match the next on crutches. Then 2 months of night sweats, 3 days in hospital, and such severe joint pain and swelling in my ankle, then elbow, then knees, that I still have limitations, and lost 15 pounds. I’m 8 months post recovering and back working out and ready fo summer.
Stay positive, get a proper diagnosis, and never ever give up.
Andrew said,
April 14, 2015 at 2:59 am
Hi Zachary H,
I now live 60 miles NNE of you in McM County. I’ve had this PV challenge for 6-10 years. I visit a friend in Signal Mt twice a month or so (assuming you live on 2300 Holly St). Send me an email at omnibus2001@gmail.com if you’d like to email or talk. A
Mary Grosso said,
May 12, 2015 at 12:42 pm
zachary get tested for Toxoplasmosis a PCR or DNA test the IgG or IgM may not show it as with time the titers go down I had a friend who contracted this it can come from cats rare meat vegetables not washed well water wells other animals Drs. do not test for this rountinely and it was thru my research that my friend was tested and tested positive 4 times their is treatment it effected her walking and she went to walker in weeks it effects the muscles lungs heart brain also the DRs say at times the spots they see in the brain are starts of dementia but in fact could be Toxoplasmosis dogs also can get this and develop tumors and problems with the ankles as you are describing my friend also had lumps in bottom of her feet also cysts read as much as you can about this on internet also test for Hemochromatosis an inherited iron storage disease as toxo and Parovirus can be associated with this, Chronic Parvovirus can effect the blood marrow and appears with immune system is down
Zachary Headrick said,
April 9, 2015 at 11:58 pm
Yea, I try to stay active, I have a 2 year old boy and a 10 year old girl so they help. I already had a test for the antibodies and tested positive, I’ve been seeing neurologists but their knowledge of b19 is limited. I am going to see my PCP on Tuesday to get a referral to an infectious disease specialist and possibly a rheumatologist. My symptoms have definitely improved in the past year and a half, I feel like I’m getting better, either that or I’m getting used to it. It’s just tragic, I used to be outside in the woods riding bikes and playing baseball and to suddenly have my mobility taken right out from under me and nobody can tell me what is wrong with me and that maybe I need to see a shrink. It’s frustrating. Thank you guys for the feedback, I will definitely consider the suggestions.
April said,
April 10, 2015 at 6:37 pm
Do you still deal with the rash? Does it come and go? Does it itch? How are you doing now?
julia said,
April 10, 2015 at 8:37 pm
Hi . I went to a fatigue specialist, he put me on LDN. It has made a significant difference. I’m not picking up viruses, and little to no fatigue which means I can exercise more. I’ve stayed off gluten, and little to no meat, so maintaining a healthy diet, which goes pear shaped over holidays. I’m beginning to feel like a normal person again. However I must exercise (Karate) to maintain pain, But I highly recommend LDN and from my research it has little to know side effects, the only down side is there is little to no research done on long term use of this drug. But the specialist claims it’s been in use in America since the cities, and drug companies can’t make money out of it, so that’s why they are unwilling to main stream it. It’s widely used for chrones, and various other disorders. A particularly disturbing symptom I had from Parvo was in balance which the LDN seems to have stopped. So not completely out of the dark but, I can see the light, and I’m running towards it. Blessed be’ Thank you for this site which has helped me name the reality of the nightmare I have experienced which in turn has helped me acknowledge the fight required to get help. Every day I say thank you for my healing, I now think of my self as a healthy human being who is doing all she can to challenge a virus which nearly got the better of me.
Tina said,
May 12, 2015 at 8:26 pm
What is LDN???
julia roddy said,
May 16, 2015 at 4:30 pm
Not sure you got last message. Anyway LDN is low dose naltrexone it has little to no side effects, however allot of pharmaceuticals don’t have it because it wont make money. ??? It’s been in use in America since the fifties, but there have been no clinical trials to record it’s long term use, and to Dade from my doctors and my research I have yet to find anything negative written about it. It blocks opiates, which produce a cell called the ghlia cell stored in the central nervous system and this works on protecting the immune system. It has been like a miracle for me since being diagnosed with Parvo in 2008. I have a relatively normal life now, I have energy to paint and decorate, and make dinner after! My own GP doesn’t prescribe it because it’s not recognised, it was a consultant in a private hospital who prescribed it for me. It is registered, and the compounds are non toxic so Its a mystery as to why it’s not more accessible. It is used for many illnesses, such as chrone disease, MS, Fibmoralgia (excuse the spelling) but I would highly recommend it. Since taking it I have not had viruses, the fatigue is disappearing, it took a while but it’s rare. Julia
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Tina commented: “What is LDN???”
Amy Jervis-Gober said,
June 10, 2015 at 2:04 pm
Can you get this drug in Canada or Europe? I’ve got a script just need to send it to SOMEBODY. ANYBODY.
Date: Sat, 16 May 2015 16:31:02 +0000
To: oneyelobug@live.com
Annette Riddle said,
June 29, 2015 at 9:51 pm
What is ldn?
sheri hunter said,
May 6, 2015 at 1:30 pm
I was positive for parvo b19 but the infectious disease doctor told me it would go away in 7 to 10 days. I knew she was nuts because I had been sick for so long. I got no help or answers. My question is how contagious is it. I’ve had 2 friends suffer miscarriages and many friends get spine and neuropathy problems. Many elderly at my church and other friends have died. Could it be that contagious.
Mary Grosso said,
May 12, 2015 at 12:29 pm
sheri read my comments a rash is associated with hemochromatosis and {toxoplasmosis it can effect the spine cause miscarriages the brain can be effected cause blindness hearing loss and neurophy problems need a PCR test for toxo can not rely on IgG and Igm as they wane down with time it can come from cats rare meat vegetables not washed good drinking water (wells) Hemochromatosis is an iron storage disease inherited and all these other diseases are associated with it including Parvo B19 you have to insist the infectious disease test via PCR for toxoplasmosis they do not on a rountine basis and insist a PCR test!
Mary Grosso said,
May 12, 2015 at 12:23 pm
You all should be tested for Hemochromatosis all the above are associated with it also be tested for toxoplasmosis a PCR test for toxo the IgG and IgM test may not show it caused by a parasite T.Gondi {three tests or dna for Hemochromatosis serum ferritin, transferrin and TIBC or dna test} look these up on internet {Internet diseases associated with Hemochromatosis} it is an inherited iron storage disease and u can actually get toxo from your mother also all these symptons are related
julia said,
May 16, 2015 at 3:56 pm
Hi LDN is low dose naltrexone it has little to no side effects. It has been used in America since the fifties, yet it is not recognised by many pharmaceuticals because apparently they wont make money from it. There have been trials done for people with chrones using it but not on going Parvo or chronic fatigue. It is like a miracle, I have not had a virus since taking this drug, my energy levels are back, I’m painting the house today and I’m not exhausted. I pay forty euros a month, it has been prescribed by the doctor and I would shoot anyone who tried to take it from me! My only concern is that they haven’t got any evidence of long term use via trials, but to date there have been no issues recorded, It blocks opiates, which produces something called gliah cells which protect the immune system, the glia cells come from the central nervous system, and it is these cells that come into play when we get a virus. My guess is that when we got Parco, our immune systems went into overdrive which damaged the central nervous system.
Veronica said,
May 21, 2015 at 7:31 pm
Hi,
I’m so glad i found this site. I was diagnosed about 2 weeks ago with Parvovirus B19. It all started in March when I went to my family doctor because of a severe stiff neck and fever. Upon examination he said that I had a bad throat infection (my throat did not hurt) he gave me medication for the infection along with pain meds for my neck. I did not take either of them thinking the stiff neck would go away. That was the tip of the iceberg. The next week my hands and my feet had a red rash and very itchy. By Friday I couldn’t move my arms the pain was in my elbows, wrists, and knuckles. Imagine how a person would hold their arms had they had casts on from shoulder to hands. I went to the ER that night. The PA said, and I quote “yea, i see they are swollen, but i don’t know why”. I got yet another prescription for pain meds. The following morning I went to a different ER, the doctor there said I had Reactive Arthritis. He prescribed Anti-Inflammatory. The following week I went back to my PC doctor because now I had pain in my ankles and jaw. He could not figure out what was wrong so he sent me to and Infectious Disease Doctor which i had to wait 2 weeks to get into. The day before my appointment my feet, Ankles and left calf were so swollen that he sent me right to the hospital for a scan looking for blood clots. He also sent me for extensive blood work. Yet another week and half had pasted and here are the results.
Parvovirus B19, IgG 3.3 High
Parvovirus B19, IgM 6.1 High
Normal index – 0.0 – 0.8
So, apparently this is what I have and was told it can take weeks if not months to go away. The weird thing is, they do not know how I got it. My daughter is 28 and lives 5 states away, I have not been around any children. The only child I was around that was sick, was in January on a Plane and he sat behind me coughing and sneezing. The IA doctor said the tests were too high for it to be that long ago that it had to be within the last few weeks of the blood results. This all started on or about March 27th – Today is 5/21 and the joint pain has gone away, but not the swollen ankles, calf or hands. And suggestions on relief for this? And shouldn’t I be tested again to see if those levels dropped?
Sincerely
Veronica
serenamuse said,
May 21, 2015 at 8:25 pm
As far as getting it, a child does not have to appear sick to be infectious. A child with rosy cheeks can have fifths disease (the form the children get). It can take years to never to go away, but at least it is early days for you. Rest, eat a super clean diet and try to give your body every chance to fight it off. If you push through you will make it worse. There is no cure at this point, so just take really good care of yourself. Drugs will address symptoms but only temporarily and come with a host of side effects.
Veronica said,
May 21, 2015 at 8:38 pm
I have not been around any children, but anyway he did tell me it’s called fifth’s disease in children. I have been on a clean eating kick for the last 2 1/2 years, I go to the gym 5 days a week. I have notice other than the swelling and joint pain, that I do not urinate as often as I should since i drink 5-6 20oz bottles of water a day. I feel most of my swelling is water retention. My WBC was also high in my urinalysis but he hasn’t mentioned anything more about that.
Mary Grosso said,
May 21, 2015 at 11:33 pm
All of you u should be tested for Hemochromatosis and toxoplasmosis
Hemochromatosis is associated with Parvovirus B19 toxo and others shingles, Hepatitis B & C Diabetes more must be PCR test for toxoplasmosis serum Ferritin transferrin TIBC for iron this is not just a simple iron test
Vineeta said,
May 25, 2015 at 9:31 am
HELP!!!!!!I AM DYING TO GET HELP. MY MOM IS ALMOST IN HER DEATH BED. SHE IS A MATCH TO EVERYTHING YOU WROTE. NO ONE CAN TELL US WHAT TO DO.
julia said,
May 29, 2015 at 4:09 pm
Ask the doctor to prescribe LDN. Go on a detox diet of healthy foods etc. rest when you need to exercise when you can.
Vineeta said,
May 25, 2015 at 10:59 am
I read some of your stories. No one has mentioned rusty taste buds anyone has problems with tasting food? My mom has all the other symptoms that you all have mentioned. Kaiser docs still after 1 and half years still do not know what is wrong. I just emailed her Doc to test for Parvo. I am so sad. I am so tired of docs, hospitals, researching.
We just pray now.
mommysmumblings said,
May 25, 2015 at 4:29 pm
I was wondering if anyone one here’s flare ups start with what seems like a sty in your eye. I seem to have a flare up every time my eye swells a lite.
SparklyD said,
June 13, 2016 at 7:25 pm
Yes. I have this. Inner corner of the eye area. Near the lacrominal sac. Anyone else?
mommysmumblings said,
May 25, 2015 at 4:31 pm
I was wondering if anyone on here has a flare up to start after having a sty in your eye. I have noticed mine does. I’m starting to think its not a sty but yet an early symptom.
Tara said,
July 10, 2015 at 2:05 am
I am trying to find more information about this parvo. I am a teacher. I contracted parvo b19 a week after I had gallbladder surgery and it left me basically crippled for a month. Now 3 months later my joints are hurting again I’m exhausted. I’m sore all over and I feel like I haven’t been right since my infection. I am looking for new info and direction.
veronica said,
May 25, 2015 at 5:43 pm
I did have a weird taste at one point but thought nothing of it as it went away rather quickly. I just read about uti’s and parvo. I do not have one but my urinalysis came back abnormal. I mentioned to my IA doctor that I drink about 100oz of water a day and urinate, if im lucky 4-5 times A DAY!. when I should be going that much with one bottle. He just brushed it off… the other day I noticed it had a weird odor but it was just once and hasnt happened since. I still think this is some connection to the PV. I cant believe this is something that will never go away. My joint pain is back but not as bad…yet….the tingling burning is also back. I just started with a cold and im thinking that is why the pain is back…
Veronica said,
May 27, 2015 at 1:25 pm
Jennifer, I was never diagnosed with a UTI, but my WBC count was high in my urine and my WBC esterase was abnormal. I’ve read that you should not even have any blood cells in your urine at all…
Veronica said,
May 28, 2015 at 3:13 pm
Well, i’m going on my 4th week of being diagnosed with PV B19. Who knows how long I had it before that. Today I feel horrible. My ankles are no longer that, but now kankles. I even went to the Urgent Care last night thinking I sprained my ankle, it’s that swollen. I wish I could post a pic to show you. There is no sprain or break. I’m writing it off to the parvo. The palms of my hands are burning that i wish i could just stick them in ice water. Im starting to feel like i’m sinking into some kind of depression thinking this is never going to go away. Does anyone have the burning sensation in hands/feet? What do you do for that relief? And for the swollen joints?
April said,
May 28, 2015 at 3:48 pm
Hi! I’m having the same issues 😦 burning all over. Ask your doctor for atarax. It helps a little.
April said,
May 28, 2015 at 3:47 pm
Hi! I’m having the same issues. Burning all over 😦 ask your doctor for atarax. It helps a little.
Amanda said,
June 1, 2015 at 3:59 pm
Does anyone experience severe sore throat? I can handle a lot but throat hurts so bad
Andrew said,
June 15, 2015 at 9:35 pm
See your doc for lidicaine as dilute syrup version for gargling. It’s effective in numbing a sore throat.
Andrew said,
June 14, 2015 at 2:51 am
I had a severe rash outbreak in ’14 across my neck, upper chest and arms. My PCP saw later during recovery and commented how it resembled Grover’s disease. In wikipedia it redirects you to the technical name, article, photos. The photos looked as I did…in bad shape.
hydroxizine anti-histamine helps with itching and perhaps heat?
Andrew said,
June 15, 2015 at 10:52 pm
I’m looking for others’ opinions.
For those of you who had/have severe rash on the arms, upper chest, or neck, PLEASE have a look at photos found at: wikipedia, search Grover’s Disease, two photos of active rash at 3 months and 5 months.
My extreme rash of 2014 looked roughly identical to the photos shown there.
Do these photos look like your rash outbreak? Comments
Annette Riddle said,
June 29, 2015 at 9:46 pm
I am a 50 year old woman, I just read be lab results saying I have extremely high ebv and parvovirus levels. I have been aching and fatigued for 15 years. Help!
Amy Jervis-Gober said,
June 30, 2015 at 12:03 pm
I’m in the United states. I’ve had this for six years. Flu like syptoms fatigue extreme brain fog. Read on here about LDN low dose naltrexone. Went to the Website lowdosenaltrexone.org and thought what the heck. I went to my shink thinking he’d be familiar with it. He sees a lot of people with chornic ilnesses. Nope. He looked it up on his doctor super-computer and instantly found what he called good serious studies done in Europe. Wrote me a perscription. Had to go to a compounding pharmacy because no drug company makes this drug in this stength, due to the fact that the patent has run out and they can’t make money on it. I’ll leave that rant for another place and another time. Got it filled. Started on 1.5 milligrams. And, wait for it….. The next morning the brain fog that had gotten terrible over the last year just vanished. I’m serious. Gone. Poof. I’m a writer. I couldn’t write for more than fifteen minutes at a time. So frustrating. I’m now bck to hours of writing. Clear headed. More energy. Slipped up to three milligrams and am going to 4.5 which is the highest dose in another week. Oh and the flu like symptoms went from a 9/10 in severity to a 3/4. Not kidding. Serious. Research this drug. I’m convinced that if the pharmaceutical companies could make money on LDN you’d be hearing about it constantly because of the range of conditions it helps. It’s like a miracle. Thing is it’s been out there for years and I’d never heard of it. My doctor had never heard of it. So I’m telling everybody.
julia said,
June 30, 2015 at 12:12 pm
Hi Amy ask your doctor to give you LDN. Stay away from gluten and be moderate with any toxic substances such as alcohol sugar etc. Everyone has different ways of managing this disease and through trial and error you will find what works for you. Good luck. The LDN has made a huge difference to my auto immune symptoms, and reduced the aches.
Amy Jervis-Gober said,
June 30, 2015 at 1:33 pm
Oh yes, I’m not sure what you read, but I’m on it. My brain fog disapeared and my virus sympttoms dropped in severity from a 9/10 to a 3/4. It’s amazing. I have energy. It’s the bomb.
Bonnie said,
July 11, 2015 at 4:32 pm
I struggled with Parvo in 2012 and after months got it under control and have been symptom free ever since. I recently was prescribed Levofloxacin and after a few days my joint pain returned and was very intense. It appears the med stimulated my dormant Virus. Has anyone else had this type of reaction?
Veronica said,
July 17, 2015 at 12:45 pm
After being diagnosed with Parvo B19 in April, it is now July and finally all symptoms have subsided. No swelling, no joint pain (knock on wood). I will say back in December I was walking down steps and missed the last step. I twisted my ankle but nothing major. Once I found out that I had the virus it seems that that ankle was affected more so with pain and swelling as it was the weakest joint I think. I still have slight swelling and pain in it, but not like I did a few months ago. I hope that everyone finds relief.
Denise said,
August 2, 2015 at 12:26 am
I contracted Parvovirus B19 when I was about 36. I was in the hospital for 4 days, the doctors in the hospital in Atlanta next to CDC. My knees were so swollen and I ran a fever of a 104 constantly. Well they told me after 4 days it was viral and would run its course and go away. But now I’m 50 and my knees hurt so bad. Was wondering if I still have Parvo B19 still?
Thanks
Denise
serenamuse said,
August 2, 2015 at 5:43 am
It is possible. My infectious disease doctor told me that the virus stores up in your bone marrow and reactivates from time to time when under stress etc. I’ve had flare ups from time to time for the past 13 years. I know how to manage it better, but I can also predict now that I will have down time following an over active or stressful time, end of spring semester I can often take six to eight weeks to really pull out of the flare up.
Mike Coppedge said,
August 12, 2015 at 1:43 pm
I was just recently was diagnosed with parvovirus. I’m a 43 Deputy Sheriff from North Carolina. I noticed at home and work bumps under my skin all over my fingers. I didn’t think much of it because it went away. My fingers hurt and I could hardly close my hands. It cleared up but weeks later I started having heart attack symptoms. I was kept overnight at the hospital for tests and nothing was found. Heart was fine. Went to my primary care physician after this hospital visit, at the hospital I didn’t even think about the rash on my hands being anything but I told my primary doctor and he said it was Parvo. He said it should clear. 8 months later I’ve developed severe arthritic pain in knees, hands and shoulders. Doctor finally did a blood test and confirmed parvovirus. I was put on prednisone and Hydrocodone. Didn’t help. Now on Meloxicam and it seems to help. I hope this clears up eventually but I’m concerned with how long this could last and could it get worse. Any advice because it’s really making me feel pretty down. Fatigue and pain is getting old. All I want to do is lie in bed all day…………… Family is worried to.
Veronica said,
August 12, 2015 at 4:42 pm
Hi Mike,
When I read your post it made me think of something. Back in Jan/Feb I remember laying in bed and was having a hard time breathing and just had this weird feeling running over me. I actually got out of bed and went to the ER (I never go to the hospital) thinking i was having a heart attack. Everything was fine though. It wasn’t until March when I couldn’t move my arms as I was in extreme pain. After a month or so a blood test confirmed I was positive with Parvo B19…. Today is the first day in a little over a month that my joints in my hands and fingers are starting to hurt again. Good luck and I hope everything works out for you
Mike Coppedge said,
August 12, 2015 at 5:30 pm
Thank you, hope you get to feeling better also. I’m little worried about possible long term effects this could have. How it could hinder my.job if it worsens……..we’ll see I guess.
julia said,
August 12, 2015 at 6:21 pm
Mike ask your doctor to prescribe ldn, low dose natrexol I found it very helpful especially regarding the fatigue.
Andrew said,
December 28, 2015 at 1:31 am
Hi Mike,
I read your story and recognize some similarities with my own case.
I had a positive result for Parvovirus-B19 around 3 years ago. I was experiencing extreme pain and fatigue. My pain was found in my lower back plus hips and upper thighs. Pain in the hips and upper thighs was later explained as referred pain from my lower back. I also had overwhelming fatigue day after day. Sleep gave me very little relief.
With the PV-B19 result I assumed that PV-B19 was responsible for all these symptoms. That was truly incorrect.
After MRI and CT imaging studies I learned I had a number of specific problems with my lower spine. I experience degenerative disc disease, one compression fracture, severe osteoporosis, plus arachnoiditis in the lower lumbar area. I use medication to cope with the pain from the arachnoiditis. I don’t know if PV-B19 contributes to my pain.
Before testing for PV-B19 I was evaluated for MS, brain tumors, and PMR – polymyalgia rheumatica. For the PMR I was prescribed prednisone. Prednisone generally cures PMR, but it had no impact on my condition. I used hydrocodone early on, but it gave me headaches.
I used meloxicam, and I felt it had a mild positive impact. After one year I switched to generic Celebrex, and felt a significant improvement in some joint pains.
Time released morphine gave me very little pain relief. It wasn’t until I began treatment at a Pain Clinic that I began to get some pain relief. That was a very positive step for me.
Dealing with fatigue and sleepiness is a real challenge for me. There are some medications that help patients cope with the symptoms. I’ve been successfully using generic modafinil when I face a long day of driving and appointments.
I hope this is helpful.
Kim said,
August 17, 2015 at 2:54 am
Hello, Does anyone have the rash on their cheeks? I got the virus about 1 1/2 years ago and i have still got the rash on my right cheek. Is there a test i can have to tell me if the virus is still active in my system? I want to try and fall pregnant but with this rash still coming and going on my cheek i am worried the infection would still affect an unborn child. Also, is there a facebook page for suffers to support each other?? Thanks
Karen said,
August 29, 2015 at 6:09 pm
Hi! I’m so happy that I stumbled upon your blog. I’m 25 years old and was diagnosed with Parvo b19 about 6 months ago. I had severe joint pain all over my body (mainly in my back, hips, and legs) causing me to barely be able to walk. I have very mild scoliosis so my first thought was oh no has my scoliosis gotten worse? So they did a ton of MRIs and everything looked normal for the most part. Someone recommended I go see a doctor in Nashville and when I went in to meet with him and explained all of my symptoms to him, he mentioned he thought it might be Parvo. And after bloodwork, yep I found out I had Parvo. Of course I had never heard of this illness in humans. The doctor said that since I was young and previously very healthy that after a couple weeks of rest I should be back to normal. Well that’s the opposite of what happened. Six months later and the fatigue is still unbearable. My joint pain has calmed down a lot, thanks to some anti inflammatory medicine but every now and again my joint pain will flare up pretty badly. On top of this I’ve also had really bad nausea. Apparently that’s not a common symptom for parvo? So I was wondering if anyone else has had that problem? They just gave me nausea medicine to take which helps tremendously but it makes me drowsy. They’ve done ultrasounds on my stomach to make sure it’s not being caused by something else but everything is normal. Every time I ask my doctor what I can do to get better as soon as possible he always says there really is no treatment for parvo except lots of rest and plenty of fluids. Well because I have had severe fatigue the past six months, I’ve unfortunately been bed ridden and have barely been able to work more than 15 or 20 hours a week. Sometimes not at all. And I use to work 40-50. It’s been so debilitating and since rest just doesn’t seem to cut it, I’m wondering if any of you all have found anything that has improved your fatigue? That’s what I’ve been struggling the most with and at this point I’m willing to try anything. Also, recently I found lumps on the back of both of my knees and after X-rays they found that I have permanent cartilage tear on both knees which will cause bakers cysts on the back of both of them for the rest of my life. This was a result of my severe joint pain in the beginning. If anyone has any suggestions on what to do about the chronic fatigue I’d appreciate it so much. Thanks for listening to me! 🙂
Mike Coppedge said,
September 30, 2015 at 12:08 am
Never got an MRI…..just taking meloxicam. Has been 9 months for me. Still aching in my joints. Just trying to deal with it.
julia said,
September 30, 2015 at 12:20 pm
Hi I got pregnant one and a half years after my diagnosis. I did have a miscarriage before I conceived and gave birth to my lovely son. It may have been related to the parvo or because I was in my forties.
stephanie said,
September 30, 2015 at 4:29 pm
I caught it while I was pregnant as well. And I was 40. I was in my last couple months of it. I had to go get ultrasounds done weekly on the baby. I delivered him and he was fine. Me well its been 7 yrs now and I still fight the aches. I have gone to multiple doctors and tried all kinds of meds. Now my general doctor says I have Fibromyalgia. He is giving me gabapentin for that. I don’t think the aches will ever go away.
Mike Coppedge said,
September 30, 2015 at 12:29 pm
I have switched doctors, he has placed me on a specialized diet and numerous vitamins and supplements to help with dealing with this. Only been a week. Can’t see results yet. Hopefully it will help.
julia said,
September 30, 2015 at 7:29 pm
Hi Stephanie
Yes I too was diagnosed with fibromyalgia, I take a medication calls LDN and it helps greatly with the fatigue. I also avoid gluten.
Rachelle said,
October 15, 2015 at 4:58 pm
They found Parvo in my blood work. It wasn’t active tho. I was diagnosed wit RA at 23 and now at 34 I’m being tested for Lupus as well. I actually had the RA growing up jus thought it was all growing pains. I see one the top specialists in Nashville, TN!! He has really helped me. He said there’s a correlation between Parvo and RA!! I’m so glad I found this thread!!!
KAREN HEATH said,
November 8, 2015 at 8:44 am
“I’VE WORRIED ABOUT EVERYTHING FROM RHEUMATOID ARTHRITIS TO BONE CANCER,I ALSO HAVE CROHN’S DISEASE! ~ANY SUGGESTIONS? “
Shelly Doughty said,
December 25, 2015 at 7:47 am
Thank you so very much. My Dr says that I need therapy. After a week in the hospital, being misdiagnosed with a tick fever, the (specialist ) finally diagnosed b-19. Absolutely the most painful thing I have ever experienced.
Prednisone really helped me but there are terrible side affects. The only thing that has helped, besides steroids, is Cymbalta.
The CDC was of little help.
I just want everyone to know that if you have this horrible virus I know the pain.
I hope a cure is found. Of course, no one is looking because (it’s a mental health issue) !!!
I was diagnosed 18 months ago and I still have horrible pain in my joints.
Mike Coppedge said,
December 28, 2015 at 1:07 pm
It’s been a year now. Still dealing with this. Mostly arthritic pain in my hands, wrist, knees and lower legs. Just take ibuprofen when I need it. Seemed to flare up pretty bad over Christmas. Idk why? Warm weather here but rainy. Thought maybe that effected it. Tired of dealing with this but I guess I’m stuck. Switched doctors, he’s been very good but still not much that can be done. Thanks for letting me know your story.
Veronica said,
December 28, 2015 at 2:09 pm
Hi Mike,
I’m coming up on a year of diagnosis. Although I have very little joint pain these days, I do have very swollen ankles most of the time and mostly below my knees… what kind of doctor is everyone seeing? I have also felt like I have been retaining water A LOT. On thanksgiving day I ended up in the ER thinking I was having a heart attack, ended up being inflammation of the cartilage in my ribs. I have no clue how that happened or if it’s even related to the Parvovirus. I did let the cardiologist know that I was diagnosed with it in April…
DruAnne said,
December 31, 2015 at 7:48 pm
I have this horrible virus which makes me feel like I am crippled and dying. I am determined to get over this and here is what is working for me. I am treating this the same way as an auto immune disease. I have given up gluten sugar corn and dairy. I am on paleo diet and following Dr Blums Immune Recovery Plan. I know my body is attacking itself trying to get rid of this virus but it is not winning.
Here is what you do:
Drink lemon water every morning and evening
Drink purified water
Eat only fish veggies and low glycemic fruit
Use coconut oil and eat coconut yogurt
Eat lots of greens and broccoli to repair gut
Take probiotics and fish oil
Take two tablespoons apple cider vinegar morning and night
Use fresh hummus salsa and guacamole for salad dressing
Take Garden of Life Raw Fiber twice a day
Don’t eat after 5
Do not take Advil it doesn’t work and makes leaky gut worse
Read Dr Blums book
Do this for one month and you will be 85 % better
Be happy we don’t have a degenerative RA disease but treat it like it is to feel better
I hope this helps you! I feel like crying it hurts so bad at times but I am so much better when I do the above
I will keep posting as new things happen
I am praying for you !
This is the worst pain ever!!!!
DruAnne
Mike Coppedge said,
January 4, 2016 at 5:57 pm
I’ve seen 2 doctors about my Parvovirus, and they both said the same. No cure nor treatment. It runs its course like any other virus. The difference is, if u have it Chronic the length you have the virus varies. I’ve had it a year now. Some people it may be gone in weeks for others several years. The only treatment I have received was arthritis medication. The only change the doctor suggested could help was my diet. I’ve quit drinking soft drinks, sweet tea etc. I drink water and black coffee. I’ve quit eating breads and other foods with alot of sugar or salt. I’ve lost 40lbs quick doing this. I think it’s helped some especially with the arthritic pain in my knees. Still the pain varies and comes and goes. Wish there was more I could suggest but I haven’t been advised of much that can be done. Hope everyone on here finds the help they need. This is miserable and no one deserves it. Plus I have Kidney stones!! Lol!!! So I have a double whammy…..😦
Jim said,
January 7, 2016 at 10:17 pm
5 years ago I was diagnosed with Parvo – B19. I suffered with joint and muscle pain and fatigue. About 6 months after the diagnoses I came down with type A influenza and was treated with Tamiflu for about 5 days. After 3 days on Timiflu the flu symptoms went away and after 5 days the joint pain, muscle pain and fatigue were also gone. This lasted until Nov. 2015 when the same symptoms have come back I haven’t tried Tamiflu yet this time but I’m going to try it if the this persists.
Melissa Chapman said,
January 8, 2016 at 3:21 am
I have chronic parvovirus b19.. I was first diagnosed in 1997.. And I’m so thankful to find your post.. I haven’t found any doctors to help with this.
Darilyn said,
January 9, 2016 at 12:33 am
I have B19 and manage my symptoms. I have learned a lot about it since diagnosis in 2009…I also have a great doctor who is about 10-15 years ahead of the medical community. It’s a bone marrow virus (not arthritis, although it can activate arthritis). That’s why we are prone to anemia. My understanding is that they’ve recently discovered (researchers) the gene that is responsible for B19 flares (it’s genetic). People with that gene (don’t know its name) turned off will have the pain in the most weak areas (some people it’s the hands/feet/knees). It teams up with EBV (so when either flares the other activates too). I have hope that with the identification of that gene it will allow researchers to learn how to activate it. I just wish they’d speed it up.
Good luck to you all.
lorisabins said,
April 20, 2016 at 3:33 am
Can you share who your DR is? It’s so hard to find one that understands this!
Veronica Paige said,
April 20, 2016 at 1:52 pm
I was diagnosed last year with ParvoB19, my numbers were extremely high on the blood test. Off and on I would have some pain in my finger joints. But this past week, my hands have the tingling feeling again and my palms are bright red. My ankles are 2 times their size and my feet also feel like pins and needles. I was looking at my blood work from last year and notice that my mono levels were also high along with my WBC. I have also gained 20lbs and eat a very clean diet which I lost 25lb before being diagnosed with this. has anyone else gained weight from Parvo?
timtak said,
June 28, 2016 at 7:11 am
Parvob19 has gives people, including me edema, (water build up) especially in my lower legs (there is a photo below) because I guess the vius hangs out in my kidneys. This caused me to gain weight. There is a paper on the net which lists a few patients gaining 3 to 7 kg due to water retention.
https://www.jstage.jst.go.jp/article/internalmedicine1992/34/3/34_3_163/_article
Amina said,
February 14, 2016 at 2:10 pm
Dear Sherrie, I came across your blog accidentally, I was looking for info for a friend who was hospitalized for a similar virus. Praying for you and you good health! I don’t have any proven solutions but I have a lot of personal successful experiences for using foods to aid healing. I would strongly suggest that you look into natural remedies as well, especially turmeric (anti inflammatory) and drinking hot lemon water in the morning (has a multitude of benefits).
Susan said,
February 18, 2016 at 6:04 am
I have had all those symptoms, extreme fatigue, severe pain in my knees joints, feet itching to the point of feeling on fire, and debilitating stomach pains. I was watching something on Youtube when it just flipped to the next video. A Dr. Tent came on. He was doing a video on auto-immume disease. I just laid there listening. No one had ever diagnosed me with Parvo, but when he described my foot fire, and corrolated it to parvo, I knew he was onto something. He treats patients via Skype and I think I will contact him, as he seems to be treating all kinds of folks with these types of symptoms and curing them, naturally. I will get back to this site after I speak with him and let you all know what he recommends.
lorisabins said,
April 20, 2016 at 3:41 am
Can you give us Dr Tents info so we may contact him as well?
Jess said,
February 26, 2016 at 6:41 pm
I’m a school teacher and came in contact with parvo b19 2 years ago while it was in my classroom- got all the normal symptoms that most adults get and only lasted 3/4weeks. It came into the school again recently and I was only 6 weeks pregnant. Had the runny nose aches and pains stiff neck, bloating and tiredness, I then suffered a miscarriage, followed by aches and pains that come go. Feeling ok one day and having the need to stay in bed the next. About a week after the miscarriage I had a rash on my stomach arms and cheek. Had the doc do the blood tests and they came back saying I’ve had the virus in the past but not recently. My question is has anyone had a false negative on an active virus or do you need to test further on with the virus to allow for growth in antibodies? Or could it have been possible for it to have been still on my system from 2years ago and reactivated when I came in contact with it again??? Very confused- on one side I have doctors say I can start to try again but I know my body is still fighting something since I still have aches and pains on my joints, extreme tiredness ,stomach bloating and blurred vision in one eye that comes and goes on a weekly basis. Wake up at night with a racing heart rate when it’s all about to kick off. What I’m going through is my no means Chronic but If any one has any idea Id love to hear. Thanks
Robin Barber said,
March 10, 2016 at 4:18 am
Hi
I’m very worried. Had a test done in 1999 that was positive for the parvovirus B19 and one in 2014 and I’m still positive this whole time for the virus. After doctors and doctors they said I have Fibromyalgia, joint pain, sick, tired, anemia you name it?? Scared and don’t know what too expect? Doctors doing another test for it next week!
Kim Porter said,
March 17, 2016 at 2:26 am
I came upon this blog while researching to try to figure out what is going in with me. I started out with hives on my face and arms one day about 5 weeks ago. By the next morning they were all over my body and my joints were stiff and swollen, the palms of my hands and soles of my feet were very swollen and painful. I went to the ER and they said it was a virus, gave me a shot and sent me home. The shot helped somewhat for about a day then I woke at 2:30 the next morning covered in hives again and this time they were even in my mouth and throat making it difficult to even swallow my own saliva. Another trip to the ER and 2 more shots and sent home with prednisone and told again that I had a virus and that it should clear up within a week. Well it’s been 5 weeks now and I have found that if I eat or drink anything with ANY kind of acidic content the joints in my hands and feet swell up and become very painful. Making it difficult to use my hands or walk. If I refrain from the acidic food and drink I just have the hives on my arms, legs, and trunk. I finally got into my doctor 3 days ago and she didn’t even listen to my symptoms or what I’ve learned these last several weeks. She just looked at the rash and said it was a severe case of ringworm, gave me medicine for that and sent me home with instructions to call her if they weren’t gone in a week. Even though I thought she was wrong I have been taking the prescriptions for 3 days and my hives are just getting worse and I still can’t eat or drink anything with acidic content. Not even condiments like ketchup or mayonnaise because of the vinegar in them. Do these symptoms sound familiar to any of you?
timtak said,
June 28, 2016 at 7:14 am
Regarding vinegar, I found that acidic things (black vinegar, vitamin C) may have reduced my kidney related edema, but as you say these same acidic things may have resulted in joint pain. Or at least, coincidentally or not, what you say happened to me too. It was like I flushed the virus out of my kidneys into the rest of my body!
All the same, I stayed with the vinegar and vitamin C, and have been combating joint pain with massage, hot baths (“onsen”), other ways of promoting body heat (particularly cycling in excessive clothing), and like Julia Roddy, I do, or attempt to keep doing karate, which includes stretching e.g. somewhat like this
https://www.youtube.com/watch?v=jFN09_1-swQ retention.
Mike Coppedge said,
April 20, 2016 at 12:25 pm
I’ve had Parvo virus for a year and a half now and the pain and fatigue continue. I’ve followed my doctors orders. I take meloxicam for the arthritis pain and Tumeric also. Not sure if it’s helping. I’m frustrated and sick of this. Wish I could help or offer advice but in my case it just doesn’t seem to be working. I’m also a law enforcement officer and carrying all my equipment each day makes it worse on my knees and hips. I’m limping during the day from the pain. Hope u find some help. Don’t give up. 😀
Katie Martinez said,
April 22, 2016 at 12:05 am
I was amazed to read you have been struggling with this for 6 years. I just found out my 11 year old son is diagnosed with parvo virus. For over two years hes struggle with swollen lymph nodes, rashes and swelling in his face, he has always complained about being tired and his legs hurting because he is 11 I just thought growing pains. He was told once mono then cat scratch fever to allergies over and over again..to finally a Dr mentioning lymphoma scared me crazy. Oncologist right away determined it wasnt cancer, but couldn’t find out what was causing his lymph nodes to constantly being enlarged. They ran so many test and finally result came in. Parvo virus, now since no one hardly has symptoms of this virus they are trying to figure out how to treat him. If you have any info for us it would be greatly appreciated.
Karen said,
April 26, 2016 at 2:49 pm
My husband’s symptoms started as sporadic fever and a honey comb like rash all over his body, mainly torso. It would come and go. Then he would start to complain of brain fog, he would be lethargic, with a fever, joint pain… Now when he gets a flare up he will get a giant hot red rash on various parts of his body, be in pain, headache, fever…. It seems that any area that experience pressure, hands, feet, his buttocks from riding a bicycle, causes a flare up. His hands will swell his feet will swell and he develops a fever that lasts from 6 to 12 hours and then he will get up feeling like he’s been hit by a truck. No one has been able to diagnose. Any clues or anyone else experiencing these weird symptoms that have been misdiagnosed or not diagnosed?
Sarah said,
April 28, 2016 at 3:13 pm
I started having extreme joint pain 7 weeks ago. It took me 5 doctors to finally test me for parvovirus. My daughter had fifths and I had asked for the test from day one. But the doctors said no. Finally I know. That in itself is such a relief. I’m no longer having the extreme pain I was in week one but my hands and feet still hurt and fall asleep at night. I am a long distance runner and I haven’t been able to do any exercise during this. My question is, will doing any exercise, short runs and strength classes make this relaps? I’m eagar to return to my normal self but I don’t want this to get worse either. Also, is there anyone that has had this go away within a few months? Everything I read is long term…year or more. Scares me.
anissa prickett said,
April 28, 2016 at 10:34 pm
My name is Anissa Prickett and I am so glad there is a place where people can talk about parvoB19.
anissa prickett said,
April 28, 2016 at 10:35 pm
I have a question. Has anyone had parvo during a pregnancy and then had miscarriages there after? I am wondering if there is a correlation between past parvo infection and subsequent misscarriages?
Colleen Shupe said,
April 29, 2016 at 6:56 pm
I had a horrible case of Fifth’s Disease in 2014. I have never been the same since. My GI system is a mess and my joints ache. I went gluten free to help with the GI system pain and it helped reduce the overall inflammation. But it has its moments when it knocks me off my feet. I read that one trial used vitamin C to suppress the virus.
Linda said,
May 6, 2016 at 10:44 pm
I too suffer, since 2009..I’d love to share my story with you. I have found only warm heat provides relief. It is all I can do to got to work
timtak said,
June 28, 2016 at 8:03 am
Me too. Hot baths at a local hot spring (onsen), cycling in thick clothes, hot water bottles, hot stews, and hopefully an end to the cold weather we are now having here in June in Japan: heat is the only thing I have found to help my joints and lungs.
My daughter got it too, quite probably from me (my children are the only two in both their kindergarten/schools to have it). I have a similar kind of thing my daughter’s back rash
on my lower legs but I would not have noticed but for her (and my son’s face).
I hope everyone gets well soon.
serenamuse said,
July 13, 2016 at 4:21 pm
I used to live in the mountains and the house we rented happened to have a helo sauna. I used to sit in there and sweat to relieve the muscle and nerve pain. It really did help. I miss it!
Gretchen said,
May 10, 2016 at 7:40 am
I also live with a severe case of Parvo Virus. My Dr. (Specialist in auto-immune diseases) is trying me on an anti-malarial Rx called Hydroxychloroquin. It is a non-biological DMARD (Disease Modifying…), which apparently has less potential side effects than the biologic DMARDs. We shall see. I am hopeful. Additionally, I will add Rx Gabapentin soon to see if that helps with pain. Good luck to you. Thanks for blogging, and for mentioning Cymbalta.
Andrew said,
May 24, 2016 at 7:11 am
Hello Gretchen. Welcome if you are a new participant. I’m sorry you have come upon this illness. It is difficult to explain to others, including spouses, other family, even MDs.
I was finally diagnosed in Jan 2013. If I look back with an open mind this may have begun as early as 2001. I had a major episode in 2011 and 2012. That finally got me back on the track of investigation.
It was cute to see you use the adjective “severe” case of PV. By the way, I don’t disagree with you at all. Severe case phase may be used for a very long time. I count the days which are now NOT SEVERE. There are very few which are NOT SEVERE.
As you mention the CHLOROQUIN you use has historically been used to “prevent” or eradicate Malaria in the blood of we humans. It was then dosed as a once a week treatment. I have used it for that purpose for some 3 month periods during vacations with “ADVENTURE TRAVEL”.
I have used both uncoated and coated 500 mg tablets. The nurse who distributed them said she used the uncoated tablet because it was so awful tasting that “no one would forget whether one actually took the meds”. The only possible side effects I recalled maybe some increase in headaches and dry mouth. Any of those are much better than MALARIA itself.
I have seen msgs from many participants saying they have begun or are continuing to use this CHLOROQUIN. I do not recall any comments about efficacy in using this product. I do not recall comments about side effects. I guess I can’t ad more.
If you are using an anti-inflammory medicine I have some comments. I started with a medicine MELOXICAM. I thought the response was ? OK. After one year I changed to CELEBREX. I felt a giant increase in response to help the inflammation in my joints. I offer this advice as something that made a BIG difference for me.
Good luck with managing this condition’s affect on your BODY and SOUL. It is definitely a long lasting life changing experience.
S Igou said,
May 13, 2016 at 7:16 pm
I contracted parvovirus b19 in October 2015. I saw a board certified rheumatologist because I honestly thought I had lupus. I have all the same symptoms but my bloodwork came back atypical . I was low in vitamin d, zinc and b12 and tested positive for certain parvo antibodies. So, I started on a a vitamin regimin to boost my immune system with no betterment after 2 months. So I looked at the published research to see what was out there on chronic parvovirus b19 studies. What I have found is this…1) Intravenous immunoglobulin therapy (IVIG) has completely stopped the symptoms many people associate with this virus. Immune globulin from human plasma was first introduced in 1952 to treat immune deficiencies. IVIG is an IV transfusion of the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of thousands of blood donors and is given once every 3-4 weeks until the patient is asymptomatic. This seemed to occur after 2-3 treatments 2) Taking high levels of pharmocological ascorbic acid for 3 weeks has shown great success with stopping many symptoms including chronic arthralgia (joint pain) associated with the virus. A naturalist has advised using doses of Lypo-Spheric Vitamin C at 4 grams/day w/ dosages spread out. Several studies have administered the ascorbic acid via megadose IV because certain types of oral vitamin c can get urinated out before they can do their work. If you have severe joint pain, there is a product called Always Moving Forward (AMF) which is a sports supplement that contains anti-inflammatory and pain relieving ingredients. (I know if says joint formula but it should reduce your body’s response to the infection). This is a US company and the product can be bought on Amazon. Last, find an immune boosting tonic/drink that contains Olive Leaf Extract and Echinacea and drink twice a day (usually15 mls/serving). I have been told this tastes bad but it should boost your immune function, white blood cell count (infection fighters), is antiviral, antibacterial and antimicrobial. I am not a doctor – but just sharing the information I have found.
Susan said,
May 17, 2016 at 2:00 am
Hello, I had chronic parvo b-19 for at least 15 years. Sure there were pills that relieved symptoms but nothing stopped the flare ups. Then I started working for a hospital and 2 month after I started I had to have a flu shot. I never had one before. Well guess what? I have not had ANY symptoms since I got the shot. Something to think about!
Mike Coppedge said,
May 24, 2016 at 3:54 pm
I finally got good news yesterday. After a year and a half of Parvovirus my blood test showed it was no longer active. Have dealt with and still dealing with joint pain. Meloxicam didn’t help, currently on high dose of Naproxen twice daily. Seems to be helping. Seeing a Rheumatologist tomorrow. Hopefully it will clear up since the virus has subsided. My family does have a history of Rheumatoid arthritis so will see. Good luck to everyone out there dealing with this awful virus.
Andrew said,
May 24, 2016 at 4:50 pm
Congratulations ! I didn’t recall that you actually had a measurable active virus in your test results. Many of us only have the historical measure remaining in our blood…but we still have many of the symptoms that make us all miserable.
I’d still recommend switching from meloxicam to celebrex. It made a world of difference for me. Best wishes on your way forward.
Tania Caputo said,
May 31, 2016 at 4:11 am
I have just scrolled from beginning to end of these posts, stopping here and there and each place I see what could be my own words, my own symptoms! I contracted parvovirus a little over 2 years ago when my son was 11 and came home with bright red cheeks and the crazy rash. He recovered quickly after the rash worked its way down his body. 10 days later I woke with sore joints, fever and felt like I had the flu. Within a few days I was having trouble breathing but put it down to asthma. I ended up in hospital with failed kidneys, fluid in lungs, anemia and edema.
Since that time I have been dealing with the symptoms that have become less severe but at times as debilitating as ever. I’ve been to a rheumatologist on a few occasions and although RA is a family illness and my symptoms are very close , she does not see this getting worse at this time. I feel I should see an infectious disease specialist who perhaps would have more experience with Parvovirus. Right now I take a high dose of naproxen daily, Tylenol 3 as needed and when things get bad, when I am inflamed everywhere than I take prednisone. I just need to know if there is a better way. I am 47 and hoping to feel better somehow. I would appreciate any feedback at all.
Tania Caputo said,
June 6, 2016 at 11:24 am
Question : does anyone live in Ontario Canada. If you do and have seen a specialist (infectious disease )who has experience with parvovirus please let me know.
Jan said,
June 16, 2016 at 3:54 am
Hi.
My cousin just was diagnosed with Parvo. We are researching now. Seems there is no real treatment. Except for what you suggested in your blog. Is there any natural healing, like detoxing the body, juicing anything you might have tried and given so relief. Thank you.
serenamuse said,
June 16, 2016 at 5:19 am
I went to a naturopath. For six weeks I was on a mostly raw vegan diet that involved a huge dark leafy green salad every day. It worked, then after six weeks I slowly added more cooked food into my diet, but have been vegan for seven years now. When I start to feel my Parvo recharging, I rest, make sure I’m eating really clean, and go back to those raw leafy dark greens. I get acupuncture, and massage, anything that might help increase my body’s natural healing. You have to find what works for you, or in this case your cousin. What works one month, may not work the next. You just keep searching.
timtak said,
June 24, 2016 at 2:25 am
I wonder if my reply of yesterday was rejected for some reason. I hope not. Here is a photo of my edema ankles. It becomes very apparent when I take my socks off.
I decided to try some fairly high dose Vitamin C. One of my high school teachers was influenced by Linus Pauling and took mega doses of Vitamin C and claimed (like Pauling) that it was effective against the common cold — i.e. as an antiviral. My teacher used to sprinkle vitamin C powder on his cornflakes. I never paid him much attention.
But as S. Igou says, it is possible that high doses of Vitamin C may be helpful against Parvovirus B19. It is a very small (“parvo” means small) and simple virus so having a lot of acid — ascorbic acid — flushed through ones kidneys may simply make it difficult for the virus to remain intact.
I am also trying vinegar. Drinking (black – but I don’t think it matters) vinegar is a Japanese folk cure which again is claimed to be an anti viral cure for everything. Upon the same line of reasoning, if I can consume that which is effectively a very weak poison — acetic acid — that does not harm to human cells but may make life (?) difficult for a virus seems like a good idea.
I also realise that I may have *chronic* Parvovirus B19 because
1) While my son got fifth disease with classical “slapped face” symptoms, he was the only one in his school to do so. Perhaps he got it from me!
2) I have had edema over and over again through out my life. I have put it down to low-protein (I don’t eat a lot of meat) diet and tiredness but parvo B19 causes anemia and edema.
3) The only time I have been hospitalised for 10 days about 27 years ago was with edema. I was 24 was after I returned from Japan for the first time. Then as subsequently I convinced myself that my edema was caused by low protein and some liquorice root (which does cause temporary edema in high doses). But as my doctor pointed out at the time, both of the latter should have been cured more quickly rather than lasting ten says.
So perhaps I have had B19 all my adult life. My wife pointed out the rash this time, that was expressed so undeniably by my son. But had she not done so, or if my son had not had the disease in such an obvious form, I would not have noticed. The leg rash is minor.
I hope acids (vitamin C and vinegar) are some help.
By the way, bery high (45g!) does of vitamin C can cause renal failure.
http://www.ncbi.nlm.nih.gov/pubmed/3994472?dopt=Abstract
(I am taking far less).
timtak said,
June 24, 2016 at 2:26 am
Here are my ankles should anyone be interested
Timothy Takemoto said,
June 25, 2016 at 9:22 am
Perhaps it is a conincidence, but after taking the vitamin C and Vinegar (and I have also been enjoying acetic acid citrus dip for my noodles and chinese dumplings) my edema has gone down considerably. I still have a sock line but not as prominent as in the above photo and I have been passing fluid in considerable quantity.
At the same time however, my back feels like someone beat it with a rubber mallet and a low fever (37.7 celcius) is back. I have strangely upright posture and pains/stiffness from my shoulder blades to my lumbar region. I guess that this may have something to do with a war going on in my kidneys, but I have no idea. Does anyone else get back pain?
[Aside, I had a thing about acids. As I say, drinking vinegar every day is a popular folk remedy or prevention in Japan. Large does of vitamin C are fairly popular world-wide. It seems to me that both would be unlikely to build up much concentration in the blood stream, and both would both pass out of the body by way of the kidneys. This suggests to me that perhaps, viral build ups in the kidneys are quite common – common enough for people to want to take preventive action against them, perhaps.At the same time perhaps vinegar and vitamic C have a similar cleansing effect on other areas such as the digestive tract. I may take to drinking vinegar every day. It is very cheap. Cheaper than VC pills.]
I would really like to get rid of this virus, because it is really debilitating. I have gone from being a fit fifty to a feeble going on 60 in three weeks.
Timothy Takemoto said,
June 26, 2016 at 11:55 am
Again my responses does not seem to be displayed, which is a great shame. I will try to keep this as practical as possible.
Results
0) My daughter (as well as my son who has recovered) also has fifth disease (slapped face disease, or “apple disease” in Japanese parlance) so I am sure that this is what I have.
1) After a couple of days of Vitamin C (ascorbic acid) and Vinegar (acetic acid) and also citric acid my edema has gone down.
2) My severe back ache does not seem to have been kidney related but lung related. I was so scared about the debilitating nature of this disease that I went for a lung cancer CT scan. The result was that “there is a cloud but it is not cancer.” This is strange because a good Japanese doctor tapped my chest and listened to my breathing with her stethoscope and pronounced me free of pneumonia. But, as mention above, I think that B19 causes pleurisy – that is to say an inflammation (or rash?) of the lung lining membrane.
[My overall interpretation of this disease is that children get it on the outer skin on their face, whereas adults get it on their “inner skins.” But inner skins I mean
1) Lung skin = pleural membrane
2) Throat skin= Tonsils
3) Kidneys. I know that kidneys are up stream of the bladder but they contain a membrane that may be skin like.
3) Perhaps the meninges skin-of-the-brain]
My symptoms have been throat, kidney and lung, related.
I do not know what to do about the throat (my usual use of antiseptic gargle did nothing)
My kidneys may have got better due to the consumption of ascorbic and or acetic an citric acid,
My lungs seem to have got better. I do no know why perhaps it was related to the fact that I went cycling in early summer, wearing, The elevated temperature that I created in myself by cycling on a summer’s day in thick clothes, may have helped cure my pleurisy.
Good luck
serenamuse said,
June 26, 2016 at 4:43 pm
I have been approving your posts. If they are not showing up there must be something happening on your end.
timtak said,
June 27, 2016 at 3:02 am
Dear Serenamuse
Thank you for your response and sorry for doubting your commitment to free speech! It was probably just that my login timed out, which serves me right for being so long winded.
My only take-home for the time being is that I think that I will sip black rice vinegar, like many Japanese people, even if it is only a placebo, just to feel less powerless and because it is cheap.
https://en.wikipedia.org/wiki/Black_vinegar
Tim
timtak said,
July 1, 2016 at 8:19 am
I still have symptoms. I have a little edema, but mainly neck and lower back pain (presumably kidney) and stiffness, that makes it really difficult to get up from a lying down position. I am still on vitamin C, Vinegar and hot spa baths and I do feel better after a very hot bath but, as Serena says, my kids are getting worried and I am getting blue. I want to go back to karate, but I feel I am instead headed for a zimmer frame! Another doctor I saw said “Yes, parvovirus is quite likely but if so there is nothing to do but let it cure like a cold”.
Four weeks in, so I shall go to the local chemist and have a look at East Asian herbal kidney remedies (of which there are several)
Here is a brief translation of one Japanese page on herbal medicines to treat kidney inflammation incase anyone is interested. I am not a doctor.
http://www.kidney-supplement.com/kanpou.html
Goreisan/Wulingsan 五苓散 to treat kidney inflammation and encourage urination for reductions in edema and difficulty in urination.
Safe in rats
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4165618/
Has caused temporary liver failure in a human
http://link.springer.com/article/10.1007%2Fs10157-008-0069-y
Tokishakuyakusan当帰芍薬散 Again to treat chronic kidney inflammation and especially appropriate for women with weak constitutions. Effective against shivers, anemia, reduced urination and pain in the abdomen.
Hachimijiogan 八味地黄丸 Again for persons of weak constitution. Not only has a positive effect on the kidneys but reduces blood pressure and relieves lower back pain.
Shosaikoto 小柴胡湯
This sweet grass containing herb will reducing potassium levels in the blook this will reduce inflammation and act as kidney hormone. This is good for the kidneys but users should watch out of low potassium levels.
Choreito 猪苓湯
Reduces enflamation and swelling and increases urination thus being good for the evacuation of stones. The inflammation reducing effect is said to reduce blood in the urine and associated pain.
Timothy timtak Takemoto said,
July 13, 2016 at 1:05 pm
My experimentation with Eastern Herbal medicines did not go well.
I first of all tried “Hachimijioga” (at 10 USD for 5 days, mentioned above) which seemed to reduce edema but made me feel (coincidentally or not) that my lower torso was immovable rock.
I waited a while then I tried, “Goriesan” (at 20 USD for 5 days) which again seemed to utterly remove edema, but again seemed to rockify my lower torso (I presume my kidneys).
“Goreisan” is the stronger version of the two with several times more (but similar) active herbal ingredients.
These herbal medicines were claimed (above) to reduce edema and also reduce kidney inflammation. I am a subject pool of one with no blind placebo group. But in my singular subjective experience, these herbals removed one symptom, edema, but increased another, kidney inflammation.
Perhaps I should have persevered. I was too scared.
These days, 5 weeks and two days, after my initial fever, only my left kidney (I think it is my kidney) hurts. I remain hopeful that I will recover in the next week. But drat, in the meantime, I feel I have aged 10 years!
Godspeed!
Tim
serenamuse said,
July 13, 2016 at 4:23 pm
Life with parvo is a constant experiment. What works one month may not help the next. Yes, at times it makes you feel ancient. I hope though you will find ways to remind yourself that you are still vital! You are not the Parvo.
timtak said,
August 23, 2016 at 2:43 am
A belated thank you, serenamuse.
I did not get better in one week after my last post. My parvo has a very “long tail” meaning that it gets better quickly at first but then more and more gradually.
Now at 11 weeks since the initial fever on about June 7th (which lasted for a week) most of my other weird pains have gone leaving only kidney pain (on my right side today) which I only feel when I sit up form a lying down position. I still sometimes have to grab my thighs and haul myself up using my arm muscles because of the tenderness in my lower stomach / kidney region and due to the fact that after three months of little use my stomach muscles have become very weak. I may be able to start doing situps soon.
I took part in Karate again yesterday evening. It was so good to be attempting highkicks again.
I retrospect I wish I had tried harder with the herbal medicines. I may try again now. If they were to “work” now I will not know whether it was the medicine or whether because I was simply almost better. But then, perhaps I am not “almost better.”
If this comes back I am going to be rather peeved.
timtak said,
August 29, 2016 at 11:08 pm
I am finding that the goreisan (Wulingsan 五苓散) does in fact work on Parvo virus caused kidney inflammation and oedema (water retention).
I wrote earlier that goresan (label pictured above) only worked on the latter, oedema, and caused my kidneys to be so inflamed that I could hardly move (pain the lower back, unable to bend lower abdomen, great difficulty in getting out of bed or flex lower abdominal muscles).
I think however that the reason is because Goreisan removes the symptoms for a few hours, which,when the herbs wear off, come back.
However, having taken goreisan for 5 days I felt so fine that I forgot to take the herbs this morning. So it may not be just palliative. I may be getting better. Or it may be just the placebo effect.
It can be purchased now on Amazon.com more cheaply than it is available in Japan.
Another thing is that I have been angry about something non Parvo related lately. I think that adrenalin helps. Punch a punch bag?
timtak said,
September 7, 2016 at 4:29 am
Rachael Perry Robbins’ and everyone’s lower back pain may be Parvo B19 induced kidney inflammation.
As I keep saying, I am finding Goreisan (Wulingsan) herbal remedy to be a way of reducing kidney pain. It is often used in Japan and China. Trouble is that it is not cheap at 2 USD a day for the pills I am using now, purchased at a large discount drug store in Japan.
However I have found a cheap source from China via Aliexpress that should work out at about 20 cents a day, if it arrives, and is as effective by weight as the Japanese pills, which my Japanese wife doubts. A days worth of Japanese pills contain 1.8 g of Goreisan so the product would last about 50 days if I can dish it out in tiny spoonfuls
https://www.aliexpress.com/item/100g-3-52oz-Chinese-herbal-medicines-Wulingsan-Spleen-dampness-tea-Wulingsan-pill-powder-tea/32578666902.html?spm=2114.13010608.0.59.KoOW2V
I can’t recommend this, because it has not yet arrived, but it is a pretty cheap way of trying it out.
I don’t get any numbness just various pains.
My symptoms were:
Bone pain in my collar bone and ribs (scary! now gone)
Chest pain (and a non cancerous haze over my chest found in a CT scan that I presume to be pleural membrane inflammation)
Chest pain from my heart region which may have been pericarditis inflammation of the membrane around my heart, perhaps.
Joint paint various places
And Sore feet
Lower back pain and lower abdomen pain presumably kidneys (the last thing to improve) since it was also associated with edema pictured above.
Since all the above may be associated with internal membranes I get the feeling that adults get the parvo rash on internal skins or membranes. (I did not see how sore feet could be due to a rash on an internal membrane until I wrote this post)
So I am now searching for nerve related membranes yes, there are the
https://en.wikipedia.org/wiki/Epineurium
and
https://en.wikipedia.org/wiki/Perineurium
the latter of which may get inflamed in “Mononeuropathy” and “Mononeuritis Multiplex”
https://en.wikipedia.org/wiki/Peripheral_neuropathy#Mononeuritis_multiplex
and yes there is literature regarding “denervation” in the hands is associated with Parvovirus B19! Here it is (**recommended to Rachael Perry Robbins**):
Paper here (downloadable PDF)
http://link.springer.com/article/10.1007/s00415-011-5931-2
E.g. Patient 1 (39 yr male) “numbness along the right fourth and fifth fingers, progressively spreading to the internal side of the
right hand and forearm. Two weeks later he presented
paresthesia and numbness of the left thumb with progressive extension to the left hand combined with motor weakness. ” Patient 2 “numbness along the left forefinger with progressive spread to other fingers and the palm.After a few days he also complained of a tingling sensation in the right foot.”
The patients were treated with Immune globulin (intravenous) (IVIg) and steroids.
The paper concludes
“B19V infection should already be routinely considered in the etiological assessment of MM (Mononeuropathy multiplex), especially in the event of initial sensory symptoms limited to a hand with concurrent rash, as this could lead to an early appropriate treatment with IgIV.”
My sore feet tingled so perhaps I had it too. The soles of my feet were fine so I could not see how this could have been a membrane rash but perhaps I had Mononeuropathy multiplex.
I am NOT a doctor but I am going to add Parvo to the wikipedia article on MM so that doctors know that MM (numbness in the hands especially) can be caused by Parvo.
Stephannie said,
July 12, 2016 at 4:36 pm
Hi. Have you connected with Dr. Dantini? He is in Florida and treats Parvo with anti virals. I have blood levels very similar to yours and I am eager to try his protocol. He has had impressive success.
serenamuse said,
August 23, 2016 at 5:21 pm
Stephannie, let us know how that goes. Timtak, hoping for the best!
Marilou Camp said,
August 25, 2016 at 2:18 am
My now 8 year old son gets a rash everytime he gets a viral infection. A couple of years ago he had 2 diagnosis of fifths disease. The second more severe than the first appearance wise. Dr said its common to get it twice .so I went with it. Now 2 years later every time he gets a viral infection the same rash appears.. seems a little suspicious to me as you are supposed to be immune but the same damn rash appears. I nowcan tell if he is sick whether or not he has a rash. He had a viral infection over the andd the rash is full on. It he doesn’t seem to be affected by it much now but I am concerned he hassomething in his body that could have major effects as hegrows. Am I crazy to think this? I notice this like clock wrk and can tell you when and where it will appear. Just concerned if this will have long term effects.
serenamuse said,
August 25, 2016 at 2:25 am
Your fears are valid. An infectious disease doctor told me that the virus stores in your bone marrow and releases from time to time. It is similar to herpes in that you never really get rid of it. Some people find it recharges at times of extreme stress, others at changes of season, or when they are overly fatigued. You will have to pay attention to what his triggers are. I have found that my episodes are further apart now. It may be though that I am better at knowing the signs and can preempt a bad recharging by cutting back, resting, focusing on a super clean diet high in nutrition, finding things to help me unwind, like yoga, meditation, massage and such. Best of luck.
Tania Caputo said,
August 25, 2016 at 2:32 am
Please if someone could provide the name and location of a doctor who actually believes in chronic symptoms of parvovirus b19 I would appreciate it so much. On Wed, Aug 24, 2016 at 10:25 PM Living with Chronic Parvo B19 Virus wrote:
> serenamuse commented: “Your fears are valid. An infectious disease doctor > told me that the virus stores in your bone marrow and releases from time to > time. It is similar to herpes in that you never really get rid of it. Some > people find it recharges at times of extreme stress, ” >
serenamuse said,
August 25, 2016 at 4:17 am
I’m sorry I no longer remember his name. Was a infectious disease doctor in Thousand Oaks California. I went through the list of doctors our insurance gave me and called each one asking “do you treat chronic parvo virus”. This one did. However, by treat, he was clear that there was no cure we could only address symptoms. In the end I was no longer willing to take the drugs, which had more side effects than were doing good. So I have not been back in many years as it has been best to just deal with it the alternative way.
Ken said,
August 26, 2016 at 3:38 am
Your stories are so touching! Did your doctor(s) rule HIV, hepatitis A,B, and C infections? Those are important and can be possible causes.
paris929 said,
August 26, 2016 at 11:47 am
I’m moved by all of the stories and wish the best.
I wanted to know if your doctor(s) tested you to rule out HIV, hepatitis A, B and C?
serenamuse said,
August 26, 2016 at 5:45 pm
Oh yes. I was tested for everything.
Grace said,
September 1, 2016 at 4:07 am
I could literally start balling right now. All of these symtoms. I have all of them. I’ve had a low grade temp since January 2016. I had the rash on the backs of my hands in October 2014. And was sick. (But I’ve always had random illnesses and thought it would pass) now the brain fog the extreme fatuige. I randomly get a rash on both elbows. I was tested and parvo came back that I “had it at one point”.
I’ve been at my wits end dealing with this for almost 9 months and you gave me some hope. Going to run with the IVIG. Thank you so much for writing this.
serenamuse said,
September 1, 2016 at 4:28 am
Oh yes we all feel like crying at times. I’ll go along managing well, then I get hit with the exhaustion and immediately start to panic, this is it, I’m going into a downward slide, how bad will it be, how long will it last, how much will my pain levels rise? For the most part, it clears up much quicker these days, but I always get the panic. The start of fall and the new school year is always a difficult adjustment for me and I can plan on having to really pace myself, plan to be in bed on the weekends just recovering enough to push through the next week. I’ve scheduled my classes so that I can sleep in late, teach in the afternoons and evenings as I do better when I can sleep till I naturally wake up. I have to get a full 10 hours or I can’t function. I hope the IVIG works for you. All the best!
Sundi Sturgeon said,
September 6, 2016 at 7:13 am
Check out medical medium book and the RNA products they kill virus. Ebv and Lyme disease etc. Best of luck and blessings fruend
Rachael Perry Robbins said,
September 6, 2016 at 5:52 pm
I recently have been tested for lyme disease which we all know will come back negative, the testing for that disease is ridiculous. I tested for the Parvo 19 and it showed I had it, my joint pain and mid back pain are intolerable. The fatigue and general malaise are debilitating. I realized that I had been having bizarre rashes on my body with skin sloughing off in spots but blamed allergies, I know realize it was a rash related to the Parvo 19. I am not sure how I contracted it but I work in the medical field and that’s certainly one way. Right now it’s about finding relief for the symptoms. I appreciate being able to read all of your stories b/c I don’t feel alone anymore. People who can’t see injury assume your are full of &^%$! I just want to feel normal again. I also get complete numbness in my forearms and hands at night, anyone else get that symptom?
Janessa said,
September 10, 2016 at 6:01 pm
I just spent an hour reading most of these posts… It gave me a sense of relief that there are others out there like me and that i am not alone in this fight.
When i was 17(just graduated high school) i started to experience wrist pain. I didnt think anything of it and thought it would go away. My wrist eventually hurt so much that i couldnt move it. I thought i was broken it was so swolen. I took some tylenol for the pain and that was that. Until about a week later where my feet(especially the bottoms of them and my toes) , lower legs, wrists, and fingers hurt sp much that i could hardly walk or get out of bed.my body felt like it was 500 pounds and my hands and feet were so swollen they looked like sausages. The pain would start off bad in the morning. So bad tgat it was a struggle to walk to the washroom which was only 20 or so steps away. This continued for a few weeks until my mom finally said we are taking you to your doctor. My doctor recommended me to a bone specialist who took xrays and prescribed me naproxen for the pain. This only helped minimally. I wasnt working at the time as it was summer break and good thing i wasnt because of the pain i was experiencing. The next step was for my doctor to get a refural to a rheumatologist and autoimmune disease specialist. I live in canada where health care is free. Which means i was put on a waiting list where tge earliest i could see a rheumatologist was 4 months after! What kind of teenager wants to live like this?! The naproxen was helping just enough to get me through the day but i still couldnt deal with the pain. It was also crappy because i couldnt work out and my body was inflamed so i was gsining weight like theres no tomorrow. I weigh approx 50 more pounds tgen i did when i was first diagnosed. My mom knew i couldnt wait that long to get into a dr so she called around and o was put on a cancelation list. I got in to a dr after about a month of waiting (which is better tgan 4). At first i thought she thought i was crazy because every test was coming back negative. I didnt have any deficiencys or lupus or rheumatoid arthritis. And she continued me on naproxen and omeprazole for my tummy until my next “follow up” appointment in 4 months… I was so mad that no one knew what was wrong with me. The next visit came after struggling for so long where she asked if maybe because i had been on accutane ( a dangerous drug that was a chemo drug that is now used to treat extreme cases of acne) it may have caused my pain. I assured her it couldnt be that. So my dr tested for something else. Parvo virus. I had never heard of this before and when you google it hardly anything is found. I thought to myself great i have this virus you can treat it and i can get it over with and feel better. But thst didnt happen… She told me she doesnt know gow long i could have it for. It could be a year or 10 years or for the rest of my life. This is not something someone who was 18 at the time wants to hear. My dr started me on hydroxychloroquine which is used for joint pain amd i take naproxen as needed. It took a while to start to work but when it did i knew my symptoms and pain was still there and not completely gone, but it was deffinately better. I am now almost 20, so ive been dealing with this for 2 years already amd i go for follow up appointments every 3-6 months now. Everything was going fine until a few months ago i had a huge flare up after getting a bad case of strept throat. This made my mody feel like crap all over again. I felt like i was nack to square pne and i still feel as though im getting over it. My feet hurt so much and my wrists and hands. I am swollen and it sucks. The only other option for me if methotrexate which i do not wamt to stsrt because i want to have children one day and that drug is dangerous. So i continue on hydroxychloroquine twice daily and t3s and naproxen as needed. I really hope things start to get better for me and if anyone has any reccomendations of things to do or try i would love to hear them! No one wants to live like this. I hate when somedays i have no energy to do the things i wanna do and when i push myself the next day i can really feel pain. I try to work out s few times a week and thst helps a bit but no one deserves this. I am glad i found this site where people have the same symptoms ans virus like me. Not a lot of people know what this is. Lets make them aware! People need to be educated on what this virus is and how it affects our daily lives.
timtak said,
September 20, 2016 at 5:16 am
Parvo often effects the kidneys and people can gain 3 to 7 kg due to oedema as noted in this paper quoted above
https://www.jstage.jst.go.jp/article/internalmedicine1992/34/3/34_3_163/_article
“Four patients were treated with diuretics, the others with rest and sodium reduction”
I don’t like to sound like a pharmaceuticals salesman but I found Chinese/Japanese herbal mixture Goreisan/Wulingsan to helps to reduce the swelling (oedema) symptom due to Parvo induced reduced Kidney function. I have ordered some from China about 20 days ago. It still has not arrived. This herbal mixture is NOT a cure and I am not a doctor.
https://www.aliexpress.com/item/100g-3-52oz-Chinese-herbal-medicines-Wulingsan-Spleen-dampness-tea-Wulingsan-pill-powder-tea/32578666902.html?spm=2114.13010608.0.59.KoOW2V
I have been feeling well anyway, so by the time it arrives I will probably not take it!
Loria flowers said,
September 21, 2016 at 12:19 pm
Hope u find a dr to help u. Iget tired of the fatigue n havin stay n bed. Hurting n nauseated very weak muscle just wont go.
serenamuse said,
September 21, 2016 at 4:28 pm
The reason so many people are on this forum is that the doctors don’t have the answers. You will have to do the work on your own to figure out what will help you and what won’t. So far there is not cure.
timtak said,
October 4, 2016 at 9:25 pm
There are those that use Intravenous immunoglobulin therapy (IVIG) to good effect. This is, afaik the only known ‘cure’, effective only in some.
Other than that there are dietary things that one can do to make re-occurrence less likely. I went through all the posts in this forum for suggestions of what to eat, and what not to eat.
What to eat:
organic fruit and vegetables, raw fruit and veg、greens, fruit, veg, nuts, seeds, whole grains, legumes, vegan diet, fish veggies and low glycemic fruit
only grass fed meat
leafy greens
B-vitamins
smoothies and salads
ginger
cocoa powder
green tea, water, Pero, soy milk, almond milk, coconut milk, soy late
soy milk, hemp milk, green tea, herbal tea,
veggie sandwiches on flat bread at Subway
spinach, oil vinegar salt and pepper
bananas, apples, nuts or Kashi granola bars
oils and vitamins
lots of water
apple vinegar and honey
bee pollen
royal jelly, propellis
coconut oil, coconut yogurt
broccoli
hummus salsa guacamole
probiotics and fish oil
black coffee
hot lemon water
tumeric
Olive Leaf Extract and Echinacea
vitamin d, decaf tea and vitamin c
vitamins and supplements, dark chocolate, Xango juice
ground flax in my smoothies, chia seeds, and hemp protein powder
probiotic rich food. kefir from raw milk with kefir grains
rice milk, soy, hemp, almond
goreisan (for edema/kidneys)
DMSO, Olive leaf extract, Grapefruit seed extract, Tea Tree Oil
Also
magnets, sunshine,
What NOT eat or drink
sugar, salt
breads
soda soft drinks, sweat tea
gluten
carbs, additives, sweeteners, splenda
meat, dairy
mayo
caffeine
peppers
junk food
packaged, processed foods
alcohol
Please see also books and papers on the resource page
Rose Frankcombe said,
October 4, 2016 at 11:51 pm
Hello, Timtak, Thank you for taking the trouble to reply to my post and for the inclusion of the dietary details. I was somewhat blase about the return to ‘normal’ after my foray into the world of human parvovirus, thinking once the offending aspects of it were fixed then all would be well. My specialist has mentioned a number of times that this, the worst of the symptoms, may well recur, something I dread contemplating. All along, during the course of the search for the answer to my condition it was said there was a virus lurking undiscovered. Once recognised, by my eventual recall of symptoms from late 2015, a whole new world opened up. Not necessarily a good new world, but one where something that I might otherwise have thought innocuous has proved to be quite a nasty little devil. Reading the blogs here didn’t cheer me at all, but knowledge and understanding are important, so I will have to be vigilant over time and know to act sooner rather than later if a return of symptoms does occur. Best wishes to you and all who are enduring the blight of parvo…
timtak said,
October 5, 2016 at 2:01 am
My pleasure Rose
BTW Serenamuse, our hostess, writes above “The only FDA approved “fix” is the IVIG and it is only available if you are in the hospital dying of extreme anemia or enlarged heart.” so you may be in a position to ask for Intravenous immunoglobulin therapy (IVIG). I think I read somewhere that IVIG kills the virus in about 70% (?) of cases.
G. Hendricks said,
October 14, 2016 at 4:25 am
I, too,suffered for many years with a very severe case of undiagnosed Parvo Virus. When I finally got diagnosed I was put on an anti-malarial medication called Hydroxychloroquin, otherwise called Plaquinil. After 18 years and periods of such intense pain that I was virtually paralyzed, I began to feel some relief. Within a month the pain went from a SUDS of 7-8 to a SUDS of 4. I felt like a person again. The Dr. Doubled my dose after 2-3 months, but within a week my hair started falling out as a side effect of the Rx, so I stopped taking it. I have maintained my amazing gains. The other thing that has helped be, both before the Hydroxychloroquin and after, is a health food supplement for inflammation called Curamin. It is made from curcumine and boswellic acid. It has been a very helpful thing as well. I hope this is helpful to you and others.
Kari said,
October 14, 2016 at 8:37 am
I am a 45 year old wife and mother who has been trying to find answers to what is wrong…6 years later I may have answers..I met with my doctors assistance because again my symptoms are worsening. Excruciating joint pain all over. Nerve pain..back pain..hip pain..month after month my symptoms have worsened to the point I can barely move. I was diagnosed with fibro seven years ago but everything I read about fibro says that it isn’t progressive in symptoms..I’ve been through everything from mess to rhizotomies trying to get relief. So this assistant tests me for lupus..ra..Lyme disease..ana..and several others ..but the one that was surprising was parvovirus..I’ve had never heard of it and SD I’d some research..I’ve was shocked at what I’ve read..the symptoms seem to fit to a tee..do surprise surprise..the only test that came back positive was parvo. Needless to say I’m shocked. The doctor is sending me to a rheumatologist on the 27th. I would like to be as prepared as possible. Can I get suggestions on how to proceed? I’m hoping the doctor will be open to looking into this further..my primary almost gave me the impression that she was surprised it was positive but really didn’t go into it at all. What tests should I have done to confirm whether I may indeed have chronic parvovirus b19? Has anyone experienced hair loss? Sorry if I’m jumping all over the place..I have so many questions! This has been a long 6 or seven years. I’m hoping I may finally have some answers to what I’m going thtough!
Theresa Evans said,
February 24, 2017 at 12:57 pm
Hi Kari,
Your post is a few months old, hopefully you’re feeling better by now. Not many posts mention the HLA B27 gene. I encourage everyone if your doctor has not tested for it, they should test for it. I am positive for the gene and have been diagnosed with spondyloarthritis. Also Vitamin D deficiency typically goes hand in hand and adds to painful joints. I was initially on 50,000 IU a week and it’s now dropped to 2,000 IU’s daily. I too was diagnosed with Fibro years ago and like you, I got progressively worse. My knuckles were so painful I couldn’t even touch them, but because xrays were normal and I didn’t have the typical swelling and redness, I was passed from doctor to doctor. Until finally, one doctor suggested I see a Rheumatologist and she saved me. I am also positive for the parvovirus B19, which cancels out the wrong diagnosis of Rosacea years ago. What has helped me tremendously overall is Sulfasalazine three times a day. My one knuckle is still painful and I have more localized sporatic pain (heels, hip, etc.) but the over all feeling of pain has diminished and the localized pain is bearable when it does occur. The exhaustion and fatigue is what gets to me. I’ve learned to try and push through it and typically being active will get me there and when it doesn’t, I know I need a nice 2 -3 hour nap. Also, there are a lot of posts here and after scanning through I don’t believe anyone mentioned a starch free diet. Not carb free, but starch free. No breads, pasta, rice, etc. That has also helped tremendously. I’ve also found that alcohol is a huge no-no. Typically even if it’s just a glass of wine or two, the next day I’m done. It’s very important to listen to your body and have a great support team. My husband and children know if I need a nap, they let me nap. Sometimes I can be feeling energized and all of a sudden it’s like someone pulled a rug out from underneath me without warning and I am instantly and completely exhausted. My husband calls it “hitting the wall” because typically when it does happen? He says I turn completely pale, keeping in mind I’m an Irish redhead so I’m pale so as it is.
I hope everyone here is feeling better. It sucks for sure but more importantly, I fear for everyone out there who are still being misdiagnosed. Be your own advocate and never ever give up.
Theresa
Rama Kabra said,
October 21, 2016 at 6:33 am
Hi. I was diagnosed with viral arthralgia 2 months back….but the symptoms are absolutely similar. My medical practioner told me that the pain would go away in 2-6 months… But it seems it can have a much longer stay in the body. Get well soon.
Jean Steele said,
November 7, 2016 at 5:15 am
I have just been diagnosed with Parvo Arthritis. I cannot find information about Parvo B-19. I need any info you may have found. Rhematologist wants to start me on Plaquenil in December. Right not I only have arthritis in my left hand and a recurrent rash, fatigue. But I don’t know what other symptoms are from the disorder. Please help.
Thank you Jean
serenamuse said,
November 7, 2016 at 5:30 am
Everyone responds to different degrees and with different symptoms, the rash and arthralgia are a common link. There are numerous possibilities, so rather then provide a list, just consider what the infectious disease doctor told me “the virus has affected your entire body, no part of it will function the same again”. That sounds drastic, and it isn’t all the time, but any time I have a new pain I recognize that it could be related. Any chronic pain is likely to be related. On the upside, since my immune system is in overdrive I rarely ever catch a cold or flu. I only deal with Parvo.
Tonya said,
January 5, 2017 at 2:04 am
I was diagnosed with Parvo b19 in Oct of 2016. It’s hard for me know what symptoms are parvo because I am also CDC positive for Lyme Disease. Although, I have dealt with Lyme quite a while I had never heard of it! My doctor seems to think it’s chronic though and sending me to infectious disease doctor for immunoglobulin replacement therapy. I will know in a couple of days when my appointment is with them. So far the only treatment I’ve had is doxycycline and Ceftin neither of which has made a difference. I feel I am getting worse!
Patricia said,
January 11, 2017 at 2:31 am
My initial fifth disease was around 40 years of age took me nine months to recuperate approximately five years later I got it again they treated it with anabiotic’s and prednisones and now at 56 It has returned. The only two doctors that found this were rheumatoid arthritis doctors
Pam said,
January 23, 2017 at 11:49 pm
I have been suffering from severe joint pain and leg pain for 6 months and was just diagnosed with parvovirus b19 about 6 weeks ago I have been on placequine I think it’s called 2 times a day and prednisone for 2 months
Kelli said,
January 24, 2017 at 1:48 am
I was diagnosed with parvo b19 in march of 2016. My symptoms continued so I returned to my doctors in November. He sent me to a rheumatologist. My blood work showed a postive ANA and ds-dna was was high so she diagnosed me with with lupus. I read through some of the comments that have said it was still the parvovirus. Is that was I understanding? Should I question if it’s still the parvovirus?
Andrew said,
January 30, 2017 at 9:54 pm
Dear Kelli, my PCP ran an immunity panel on me in June 2012. I had a pos ANA with normal range 0 – 9 while I tested 10. I do not recall other results which were called normal. My PCP warned me of LUPUS. My first rheumatologist said not to worry unless results got worse. He reported that a pos ANA at or above 30 May indicate Lupus, but my result was not a worry.
A viral panel tested by a rehabilitation MD in January 2013 found the parvovirus result. A second review by a rheum’gist in 2015 revealed that the Rh MD had zero recommendations for further treatment. She said PV was as mysterious as fibromyalgia and aside from PV specialists there was no recognized treatment available. Good luck.
Beth said,
February 19, 2017 at 4:49 am
Hi my name is Beth .
I’ve been suffering for 5 years my numbers were 3times what they should be finally the insurance covered 5 day ivig treatment in the hospital it helped me for four months I was pain free different person . But just last week it returned and I suffer again waiting in hearing if I can do another round of the Ivig .
Rhonda said,
March 20, 2017 at 7:39 pm
I have my legs It started feeling tight and I cant walk like I was before one doctor gave me meds and said it might be something eles but no change at all now its getting worse and both of my feet and legs.the tightness is like moveing up my legs and I try to walk but at times I fall can someone help me at the bottom of my foot underneat its like I used a needle it was like a piece of glass it looked like I took out both feet this isnt normal would somebody knows whats up with me.Im crying out for what happen with me cuzz I was walking good before all this sad stuff with me????
serenamuse said,
March 21, 2017 at 4:36 pm
Does not sound like Parvo. Seek out different medical opinions.
cynannblakely said,
April 1, 2017 at 2:00 pm
I have had parvo since 2003. My blood was tested and I had an active and current infection. I have had problems ever since. I am brushed off by doctors even though I feel bad and some of my bloodwork is abnormal.
Who are you currently seeing now?
Sarah K said,
May 9, 2017 at 6:11 am
Help, My mother is 65 and woke up one morning with severe hand swelling in the middle of March 2017, everyday her symptoms have gotten worse, the swelling only increases to the point her fingers will start to turn purple, she has limited to almost no mobility in her hands throughout most of the day, The swelling has now spread to her ankles and knees. The pain has continued to travel up her arms and shoulders.
My mother has suffered through multiple car accidents all in which she was rear ended, so she already suffers from chronic low back pain. Besides that she was otherwise healthy, with a history of Thyroid problems. She doesn’t drink or smoke and is pretty religious about vitamins and natural remedies.
About 2 weeks after the symptons started she started getting low/mild grade fevers, which now affect her daily. Recent blood work has come back showing a positive test for parvovirus B19 lgG at a value of 7.9. Her liver panels have been abnormal ALT (sgpt) value: 269 & AST (GOT) value: 146. I believe normal range is below 58?
A test labeled; C-Reactive Protein at 2.0 mg/dl. Which is about double the normal…
After persisent pain and swelling, increasingly worse symptons im extremely worried, My mother is my Rock, she means everything to me and to see her to continue to suffer with no relief is heartbreaking. I also have a daughter whos 19months old and we live with my mother, i wonder what risks that creates?…. There doesn’t seem to be much useful information as i search the internet but this seemed like a helpful blog, which others experiencing the same types of severity…. I just wonder if theres more to whats going on with her…
Im praying for some insight helpful ideas, similar experiences & outcomes… Anything really.
Thank you to anyone who took the time to read my post.
Sincerely Sarah K.
serenamuse said,
May 10, 2017 at 3:13 am
I recommend that you take your mother to an infectious disease specialist. They should be able to address your questions. There is no cure for Parvo at this point and it is still early days for her, so she may get over it. If you and your daughter did not have immunity then you were at risk during the active stage of the virus. However, most people do not get severe symptoms. Your daughter would most likely get rosy cheeks, maybe a low fever for a couple of days. Look up Fifths Disease, that is the form children get and it is very common. Best of luck!
Jean Steele said,
May 17, 2017 at 9:24 am
Sarah K,
I got really sick in March 2016 but it wasn’t until August 2016 that it happened. I woke up one morning in August with swollen fingers and pain to the touch. My Rhematologist diagnosed me with Parvovirus B-19. The only two options for treatment was Plaquenil or Methotrexate. Both are a low dose chemotherapy drug, medical community have list as DMRAD’S = Diease Modifying Antirhemumatic Drugs. All arthritis is not curable, so these medication and more, help to slow the progression of Many Arthritis dieases. Which Parvovirus B-19 is. I currently have chosen not to do anything, as Parvovirus B-19 sometimes will go away on it’s own in 12 to 13 months. After that, it is chronic. So I am doing the wait and see approach.
The C – Reactive Protein tells the doctor that you have inflammation in your body. But the test also tells the doctor you have an autoimmune diease, which Parvovirus B-19 is.
Well, now I have arthritis in my wrist, shoulder, hip, KNEE, ankle, foot and one toe. I am epileptic and have been controlled for 25 yrs. Now I am having seizures in my sleep and I am sleeping 12 to 15 hours a day. As Aug/Sept approaches, I am looking more closely at which medication I will choose. I will tell you that the barometer is your friend. No matter the temperatures, it’s the barometric pressure that will dictate your day. Anything lower than 30° and the pressure on our joints gets worst. Stay warm, especially the hand with the Parvo. When it get cold, the pain you just can’t get out of. So keep it warm and you will have less pain. Good luck with your mom and you too Sarah K.
Sincerely, Jean
Sarah -Desparate to find answers for my mother, my hero said,
January 2, 2018 at 3:29 am
My mother continues to live in severe pain, loss of mobility and swelling in your wrists/hands. This has been a chronic, debilitating and progressingly worse symptom for my mother since March of 2017 after get results back showing positive for adult parvo.
As the symptoms have never let up, however liver functions normalized after being on Prednisone. We have still been look for answers, treatment anything to help my mom…
But as for everything else it’s only gotten worse.
What’s new***
My mother has developed face neuropathy.
So a rheumatologist has started running another run of more uncommon blood tests, one of those being a ***creatinine kinase test. Which came back extremely abnormally high. This test shows the severity of muscle damage and the body’s reaction to the shock from the damage I believe.
I’m just hoping someone out there gets enough of the pieces to this puzzle their able to get help and share their success. Praying my mom will eventually get some relief.
Has anyone developed some other severe rare disorder after parvo?
Sincerely,
Sarah said,
May 12, 2017 at 1:02 am
Good evening. My name is Sarah. I am a 34 year old mother of two, I too contracted fifths disease from my daughter, who carried it home from elementary school. Unfortunately at that time my mom did as well . We both caught fifths disease and never got better. As system after system of mine go wrong with no explanation, I am always brought back to fifths disease. I even suffer now from pschyogenic nonepileptic seizures, that came out of thin air. I am very sorry to hear about your plythe, if you ever want to talk natural stuff I have tried to help, let me know. Blessed be.
Courtney said,
June 24, 2017 at 3:31 am
Did your lymph nodes swell or get a red lacey rash and high fever? I got something they thought was parvo a couple years ago twice a year after the other. They never did say what it was. Now I have all sorts of issues since 2009.
Nicole Blackwell said,
July 19, 2017 at 12:57 am
I’m glad I came across your story I’ve been dealing with us since 2009 and I feel so isolated nobody understands or hardly anybody has ever heard of the parvo b19 virus after having my gallbladder out weeks later I started having severe pain in my hands shaking brain fog seen so many doctors they couldn’t find anything they could see my joints were swelled I had a rash but they couldn’t figure out why then I seen this one family practice doctor and he was thinking out of the box and ran the test for the parvo b19 virus he explain to me it’s a trigger of all sorts of things that can start happening to your body he put me on Plaquenil that seems to help a little and pain medication but I’ve noticed as the years go by more symptoms I have just want to feel normal again
serenamuse said,
July 20, 2017 at 4:01 am
The infectious disease doc told me that the virus stays in your system, stores in your bone marrow and releases from time to time, depending on your triggers. It affects all of your body’s systems. They won’t be normal again, but you can learn to manage your symptoms, by trial and error. Diet, exercise, rest, learning to listen to my body and knowing when to cut back are the things that have been most effective for me.
Karen said,
September 4, 2017 at 3:02 am
In 2005 I had debilitating joint pain. Went to a Rheumatologist and was tested for everything under the sun (great insurance). Everything was coming back high inflammation but nothing conclusive. After a month of blood tests and Prednisone & Methotrexate, my Dr. said, “if you were around children, I’d say, you have all the symptoms of ParvoB19 virus.” I asked what it was and she said, it is also called “Fifths Disease”
The last week I worked at my husband’s Family medical practice, there was an outbreak of Fifths.
I chose the route of an anti-inflammatory diet and mild exercise. It took a few months but I was back to my old self.
Not long after that I started having horrible skin rashes. Again, all inflammation markers off the charts, but nothing conclusive. After seeing multiple Dermatologists, Infectious Disease Dr’s, it was determined I have “Inverse Psoriasis. ”
Fast forward to 2017….rashes, fatigue, joint pain, low grade fever, plugged ears.. ( pain first started in right hip).
I’ve seen derm. 3x, urgent care and my internist. The course of treatment is steroids.
This upcoming week I have and appt. With an ENT, an Allergist and Dermatologist. After stumbling upon this site, I will make an appt. With Rheumatologist.
I plugged in all my symtoms which lead me to your website.
Sorry to see so many others suffering. More research needs to be done on this.
I’m having a flareup. I like to add that at the time this started in 2005, my husband and I split. Recently I’ve had some mild emotional drama. There is definitely a correaltion with stress and diet.
In reading other replies, I’ve had CMV, EBV and Mono. Low B12 (have been giving myself injections for 15 years) and have always ate a mostly vegetarian diet.
Goodluck to all of you.
Karen
Animalhouse22@cox.net
Nina said,
September 21, 2017 at 11:40 pm
Hello everyone,
I just found this blog and I finally feel like I’m not alone. I was diagnosed with Parvo four months ago, right after having my third child. I had many of the symptoms mentioned here: joint pain, swelling, fatigue, electrical sensation in my legs and arms. At the beginning the doctor through its related to my delivery. Once they diagnosed me with Parvo I had to stop breastfeeding. At this point I am trying to handle all the symptoms without medicine. I changed my nutrition to vegan, and in addition i stopped eating flour, sugar, tomatoes, eggplant, and potatoes. Sometimes I have better days but its always there. I also have three little kids to care for so I can’t find the time to rest throughout the day (or night as I have a baby at home).
I was wondering if any of you know about people who completely recovered?? Since I have it four months, do I still have a chance to get it out of my body??
In addition, do you have any recommendation to a good doctor who understands Parvo in Los Angeles??
Thank you for your help!
timtak said,
September 24, 2017 at 11:43 am
Dear Nina
IVIG (intravenous Immunoglobulin) treatment is said to offer a cure to some (about half?), but it is expensive and unlikely to be provided by your insurance.
While Parvo B19 may not be cured, usually dormant in bone marrow or somewhere, in many people the symptoms go away, either completely, or for considerable periods of time. I have not had any symptoms for over a year and it occurs to me that I might have first contracted it about 20 years ago but did not have a relapse for twenty years until last year. But others have on-going symptoms, and in others it depends on diet, and stress, and in others the weather.
Good luck in finding a good doctor familiar with Parvo in Los Angeles.
Tim
Andrew said,
September 25, 2017 at 8:42 pm
Check out Beth’s comments on IVGG treatment on Feb 19, 2017.
timtak said,
September 26, 2017 at 3:21 am
Here is a link to the comment
which alas relates that in Beth’s case IVIG treatment effected only a temporary relief.
On the other hand there are claims of cure by IVIG in the literature.
60% (93% temporarily, 33% relapsed) cure of B19 caused anaemia
https://www.ncbi.nlm.nih.gov/pubmed/23243178
3 cases cured
https://academic.oup.com/cid/article/36/9/e100/313942/Successful-Intravenous-Immunoglobulin-Therapy-in-3
Diane said,
November 15, 2017 at 7:13 pm
I have all the symptoms of Parvo but my bloodtest came out negative for Parvo. Has anyone had this happen?
Diane said,
November 17, 2017 at 10:24 pm
I picked up my blood test report and it said Parvo high 4.3. I cant understand why my doc would say it was negative. Frustrating.
serenamuse said,
November 18, 2017 at 2:15 am
Well it depends on the test. The typical test only shows weather or not you have at some point been exposed to the virus, it does not show current activity. The test for this is far more costly and most doctor’s don’t want to order it as either way there is no cure. So make sure you know which test it is that was given and what those results mean.
Leslie said,
November 18, 2017 at 2:50 pm
I haven’t chimed in for a long time – my story is spread across this site in detail. I contracted parvovirus six years ago. I’ve had a particularly difficult course with it. Once a year I request to have the parvo B19 DNA by PCR test performed – not the IGG or IGM test more routinely ordered. To this day it is still positive and is an indication of chronic infection. I wonder if it always will be. Not to discourage or dissuade you from seeking out medical treatment or advice, but if anything can be learned from my experience, you may very well end up back at point A – chronic parvovirus has no cure, only treatment of the symptoms and possibly time – lots and lots of time. I’ve had two rounds of IVIG, been to Cleveland Clinic twice, infectious disease, rheumatology, neurology, gastroenterology – it hit me systemically. I write only because it took a lot out of me searching for an answer – a cure, treatment – and if I can save someone that experience, I consider it encouragement and support even though it’s not the answer any of us would hope for.
Katherine Houser said,
December 14, 2017 at 12:27 am
I feel your pain Ive been dealing with this for about40 years now and everytime it flairs up it is worse. Just found thr name of what I have by accident. I went to the dr for trigger finger and the dr ask me why my legs were so splotchy I told him nobody new why thought it was the pigments of my skin. He told me to have my primary care dr do this test and so I did. When the dr gave me the results he informed me that theirs nothing can be done about it. He didnt even know what it was or anything about it. That was it he never even tried to research it. Until recently I couldnt even find anything on the internet about it. Thank you for your post and please keep me informed on any other info you find. This is stripping my life from me.
Donnamarie Pierotti said,
December 31, 2017 at 6:38 pm
I’m so sorry for your suffering. It often feels so isolating to suffer alone. I am in my bed more than I am out of it. I have Parvo B-19 plus about 6 other co-infections of Chronic Lyme Disease that went undiagnosed for 12 years. I’m used to being sick but that doesn’t mean that I’m not sad or depressed about it. Also, finding doctors who actually care and who are knowledgeable are rare to none and it’s especially difficult when family members even think you are faking your illness and making excuses for not traveling to see them. I don’t understand why anybody would not believe any of us. No one wants to be this sick and no one wants to spend their life in bed. My sincere empathy to you Katherine and to all of you who are suffering from Parvo B-19.
Debbie said,
December 16, 2017 at 9:23 am
Wow! So glad I found this site. Ive been sick since the early 1992 chronic and declining. Two very premature births, I have chronic anemia, pains all over, gastric symptoms, in bed now most of the time and feeling like my body is failing me. They also tell me I have an infection and imflamtion but dont know why. Fevers off and on and now neuro symptoms the last few months. Well my symptoms are so many that doctors always give me the blank stare and ask if I want to see a therapist. All this they have never tested me and my IgG value was 7.2 Im hoping they will finally help me. Im so tired of the fibro easy “blanket diagnoses” i do have a question? Does anyone else constantly burn up. I keep it in the 50s in my house and I still burn up with shorts and a tank?
Donnamarie Pierotti said,
December 31, 2017 at 6:48 pm
Yes Debbie, I get so hot that I’m drenched with sweat and my husband is freezing cold. I can’t stand the heat and I live in FL. I can go out now in the early morning because at this time of year it’s not as hot but I don’t go out when it heats up which is most of the year. I find it unbearable. I feel as if I’m in an oven. And I’ve also had numerous doctors suggest that I need psychiatric care. We are physically sick, not mentally ill and anyway, don’t these doctors know that the brain and body work together? I also get fevers on and off and almost all of the other symptoms you mentioned. You are not alone. I am so sorry that you are suffering. I feel so alone most of the time because even though I have a really nice husband, he is off doing his own productive things. I don’t expect him to lay in bed with me all day. People who do not suffer from chronic illness have no idea and many times say the most insensitive things that I just tell people that I’m fine even though I’m not or I just don’t answer my phone. It is so isolating to be so sick and not even get answers. I understand.
Nancy Suss said,
December 16, 2017 at 6:26 pm
I also have the Parvovirus. This winter it will be 4 years. I was diagnosed in 2013. It took the 4th Doctor to finally test me for it after I told her what I thought I had/have. Now that we’ve moved South, the Doctors here look at me like I’m crazy. Then the blood work shows high levels of it. They tell me it just as to work it’s way out of my system. Now that it is cooling off here, I am starting to feel the effects of it again. I’ve had the rash on my hands for years now. The joints in my hands, ankles and elbows are starting to hurt again. Plus, now I have tingling in my hands, feet and face. Doctors and people don’t understand what I feel like. Some days are better than others, but now I’m feeling it again. Ugh. I feel for anyone who is dealing with this awful virus too.
Donnamarie Pierotti said,
December 31, 2017 at 7:03 pm
Dear Nancy, I’ve tested positive for Parvo B-19 for 10 years in addition to about 6-7 additional infectious diseases and I’m still here without any help from doctors. I can’t find any to help me. I know how scary it is and I know the doctors treat you like you are crazy, especially in the South because I moved from NY, NY to SW FL. There was a vast difference in the way I was treated in Manhattan NY to the way I’m treated in SW FL. I’m disrespected and practically thrown out of doctors’ offices so I don’t go anymore. I try to calm myself by meditation and sleep/rest and I have accepted that I am sick. You are so right when you say that doctors and other people don’t understand. They have not walked in our shoes. Forget about them and focus on yourself. There are a lot of positive Utube videos to watch for free. I hope you feel better.
Nancy Suss said,
December 16, 2017 at 6:54 pm
I was diagnosed with Parvovirus in 2013. It’s a nasty virus. The 4th Doctor I saw finally tested me for it after I told her what I thought I had/have. And sure enough, I tested positive. Now that we’ve moved south, the doctors here just look at me like I’m crazy. Then they do the blood test and just shake their heads. They tell me it has to work it’s way out of my system and they can’t help me. Now that it’s getting cooler out, I’m starting to feel the joint pain again in my hands and elbows-along with the tingling feelings in my hands, elbows and face. I also have the lower back issues. I was fine before I was infected with this nasty viris. I’m so glad I found this website and know I’m not along and people here understand how I feel.
Michelle D Fekete said,
December 26, 2017 at 5:16 pm
I’m going on 8 months I was running marathon’s now I can’t walk I can’t hardly turn my head back and forth cuz it’s in my neck so bad and did my finger so now I can’t type it hurts to sneeze well it hurts to do everything it took my doctor months to figure out I had the Parvovirus they put me on really high doses of Naproxen didn’t work at all and steroid shots in my knees the only work for a couple of weeks I feel completely crippled I’m just at a complete loss what to do at this point
Patty Ryan said,
December 31, 2017 at 5:48 pm
Please help me, I don’t want to live like this anymore. Can you tell me what IVIG treatment is? I have had the pain and swelling for about 6 weeks and 2 weeks ago my primary care diagnosed it as Adult Parvo B19. That’s it, that’s all I know. My grand kids were both sick with cold symptoms and my grandson had a bright red rash on hs cheeks. I had a rash on the back of my hands when I saw my primary doc. She said I have B19 took blood and then sent a letter all were normal. I’m confused, in agony and scared. I don’t know what to do now or if I’m supposed to see a specialist. I was hoping someone can put me in the right direction.
serenamuse said,
December 31, 2017 at 5:56 pm
I’m sorry you are going through this. It is early stages for you though so don’t panic. Chances are you will get over it in time, but taking care of yourself is essential. Rest, seek out natural remedies to fortify yourself, diet is essential, exercise (in moderation), keep stress levels down – some find chiropractors help, others acupuncture, yoga. You have to take responsibility for your care, say no to as much as possible. The doctors will not have answer for you. There is no cure at this point. So, just have to be proactive. Read through the posts here, so many people have left comments on what is helping them. Best of luck!
Jill said,
January 24, 2018 at 1:47 am
I’m currently undergoing IVIG treatment for my Parvo B19. You will need a positive Parvo PCR test that will show that you have live Parvo DNA in your blood serum. If it is chronic – I have had mine for years – from my kiddos – then you have an immunosuppressant disorder. Those with normal immune systems will knock it out leaving you with a non-detectable PCR. Since I have a positive PCR, the IVIG treatments that I’m receiving are 4-6 hour infusions once a month by a hematologist/oncologist. You are in bed for about 2-3 days after each treatment and you feel like you have the flu. But, a week in – my symptoms lift and I feel normal again. It isn’t an easy treatment. Best wishes!
Leslie said,
January 24, 2018 at 4:52 am
I haven’t posted in a while, but I always am interested in people’s experiences with Parvo. I have fought and fought for treatment – six years with this most awful virus. A year ago I still tested positive by PCR DNA blood work. I’m impressed that Jill has received approval – endorsed by a physician and approved by an insurance company. The many doctors I have seen consider this treatment “empirical” and given the extraordinary expense of IVIG cannot get it approved. I’ve had to educate my own doctors about Parvo and advocate constantly for understanding the systemic havoc this virus has caused me. I’m just amazed that Parvo isn’t better understood. Jill, best of luck.
Kristin Jones said,
January 24, 2018 at 7:03 am
I can’t believe I’m just now finding this blog. I was diagnosed with Parvo B19 paired with Cytomegalovirus 7 years ago, after my neurologist did blood work to try to find the cause of my 6 month long migraine and found my white and red blood cell counts to be extremely low (or “nasty” as she put it). They sent me to an oncologist who thought I had leukemia for his initia diagnosis and did several rounds of blood work to narrow it down to Parvo and Cyto.
In the last 7 years, I’ve had several recurrences and have been tested for every autoimmune disorder known to man, actually diagnosed with Fibromyalgia and treat with rest, time, Cymbalta, Cetirizine, Gabapentin, Lyrica, and a litany of narcotic and non-narcotic pain relievers.
I teach high school and keep a constant line of exposure to the latest germs around me, so I tend to catch nearly every sickness that walks in the door.
I’m curious about this treatment you write about and how it has worked for you.
Donnamarie Pierotti said,
January 25, 2018 at 8:46 am
Thank you to all of you wonderful people who have posted your stories. I can only reply because I have permanent brain damage caused by undiagnosed Lyme for over a decade plus traumatic brain injury. I have had Parvo since 2008 and I never even knew that it could supress the immune system. I moved from the NE to SW FL 8 years ago and I can’t find a doctor who will help me. My case is too complicated and I don’t know where to turn to for help. I am 56 and I have suffered with physical pain, abuse and emotional abuse almost my entire life and I know that affects the immune system in a very negative way too. I don’t know the rules of this website. Are we allowed to give out our emails to ask for MD recommendations? I really need help. I have been bedridden for the majority of 2 years. I am experiencing torment. I have dropped 20 lbs. in 3 months and Chronic Lyme is known to cause cancer. My stomach hurts after I eat. I also vomit most of my food up. I have had pneumonia, bronchitis, ear infections, sinus, viruses, fevers, etc. over and over again but the last 3 months have been the worst. Just when I think things can’t get any worse something terrible happens and I feel even worse than before. I have a wonderful husband (#2) and lately I have been begging him to stay with me. I have never been afraid before. I don’t understand why some doctors don’t realize or grasp the fact that we know our own bodies the most. Will somebody please help me and answer my questions. I would be so very grateful! Thank you so much!
timtak said,
February 10, 2018 at 12:11 am
I have been lucky and not had a relapse in a couple of years. I guess most people do not so that is no big deal, but I think that I am incubating Parvo chronically since I gave (rather than got it from) my children.
I exercise lots on a road bike and eat a lot of vegetables. I also chant the name of a Buddha who is very similar to Jesus (Amitabha) so I have little time to tell myself bad news not that I have as much bad news as Kristin, Donnamarie and Cyndi below but that might be all the more reason to try repeating some sort of mantra or prayer.
Donnamarie Pierotti said,
February 10, 2018 at 7:57 am
I am very happy for you that you seem to be doing well and I pray that you remain in a state of good health and feel peaceful. And yes, we should all be very grateful for the times when we have a good day. Sometimes it’s very difficult for me but I do thank God and I do count my blessings for I still have many: I sleep in a comfortable bed, I live in a beautiful and uplifting climate (FL), I have a wonderful husband who loves me and who quit his job because I am so sick and I needed full time help because I have so many things wrong inside my body other than Parvo. My husband is such a kind man and he is my second husband. I was severely abused as a child by both parents. I had nobody but I did have Jesus as my mother had read me a book about God when I was probably no older than 3 or even less so I always believed. My first husband was a domestic abuser in every sense and his family was so hateful but God never abandoned me and so I was resilient and was able to get through an unbearable life, rife with illness of which I cannot even begin to tell you. I’m sure I already have said this so please excuse me if I’m repeating myself by I was first bitten by an Ixodes (Lyme) tick in the early 1990’s. That’s how I got Parvo. I now have been diagnosed with serious malnutrition caused by gastroparesis that I’ve had since 2003 and I have finally found out why I have been drastically sicker for now over 3 years. But I consider that a blessing also because at least I am finding out, after going to countless doctors who absolutely should have given me the correct diagnosis but I’m not hateful or vengeful. I never allowed my parent’s abuse or my first husband’s and his family’s abuse to choose the wrong path. I have been blessed because I have great empathy for people who suffer in so many ways and I truly do understand what all of you lovely people are going through. This is the most kind and supportive online group that I have ever been on and I thank each and every one of you for being decent and caring people and I pray that you all heal and that you al have peace in your lives. I’m sorry that I can’t remember names as I have brain damage. Thank you to all of you for your love and kindness!
Rachel said,
February 8, 2018 at 6:20 pm
If you are able to get to Cleveland, I highly recommend seeing Dr. Aunna Herbst in functional medicine. There is a remedy, A-EB/HG, less expensive through the Cleveland Clinic than online.
Cyndi Hatfield said,
February 9, 2018 at 4:13 pm
I just found this blog/site. It is a bit overwhelming. I can’t wait to be able to sit down and read each and every response. I have had Parvo for 2 years it progressed to “PreLupus” which has resolved as far as the lab work. I live with CFS and Fibro. I had 2 good mths in the summer which gave me a false hope that I was better. I stay as active as I can but with no energy it’s very difficult to do more than take my dog for a walk. I am about to do the infusions of Myers Cocktail. I’m gonna try this for a mth. (It’s 1 infusion a week for 1 mth then monthly). I’ll try anything these days. I’ll post more later after I read more experiences on here and have someone else engage me with conversation. Thanks for the posts. Cyndi
Donnamarie Pierotti said,
February 10, 2018 at 8:13 am
Dear Cyndi, I am not aware of this type of treatment but I want you to know that I wish you the very best and that you will be in my thoughts and prayers to heal and be able to have more energy. I’m very glad that you were able to find a treatment that may help you. It always brightens up our world when we have a flicker of hope on the horizon and while I hope with all of my heart that this works for you, don’t give up if it doesn’t. Always have hope. Do not let this terrible virus to define you. I truly understand how very difficult it is but remember that you are Cyndi, not sick Cyndi who is exhausted all of the time, just Cyndi who is going through a difficult time. Don’t ever give up and stay positive. Although I haven’t read this book yet, I’m going to pass it along to everyone in the group because I received a very positive review from a friend of mine. The book is called The Happiness Equation by Neil Pasricha but I recommend reading what it’s about before purchasing as it does talk about succeeding in business. I do find that these types of books and the strategies presented can be applied to people like us though even if we can’t work. We can still use the advice given and apply it to our own lives. Please know that I hope that you will soon begin to feel well asap.
Cyndi said,
February 12, 2018 at 2:22 am
Thank you for your reply. I will get the book. It’s funny you say my hat I shouldn’t let my illness define me because it has. I was a “nurse” and besides being a mom, being a nurse defined me. Now that has been take from me because I am too weak to work on my feet. I apply for jobs that don’t require being on your feet everyday but no one will hire me. 19 years of busting my butt on my feet, working long hours, working with back and feet pain for what?!
I do go to therapy once per week and it does help to talk. Enough complaining!! I would like to share that I’ve had ‘pain episodes’ throughout my life lasting for just a few weeks. I’d go to the doctor and get a full work up and they never found anything. I have suffered with depression since I was a kid. I think that my immune system had always been weak or that I e always had undiagnosed autoimmune issues. At some point I was diagnosed with Lymes but now it’s not showing I’ve ever had it. I think I was prone to getting chronic parvo because my immune system was too weak to fight it. Another couple things I’d like to share is that I’ve been going through perimenopause for 3 yrs. I’m a firm believer that our female hormones weaken our immune system and make us prone to disease. After I started getting menopausal symptoms I got vocal cord dysfunction with breathing problems. I cured that after one year 8 mths by taking muscle relaxers for a week straight. Within mths I get parvo. It’s like my body is just determined it’s going to be sick. I do have a lot of stress in my life and I def feel worse at times or worsening stress. Thanks for listening. I hope someone can relate to something I’ve said.
Karen S said,
February 10, 2018 at 4:41 pm
Hi, on 30 December 2017 I had very sore hands and put it down to arthritis, went to bed that evening and woke at 2am hardly able to move my hands as they were swollen. Wasn’t sure what to think. As it was the New Year holidays I had to wait until Tuesday 2 January to see my doctor and kind of hoped I was just reacting to the heat here. My doctor checked my blood pressure checked me over as the swelling and joint pain was over my entire body. She was concerned enough to put me in hospital. The Dr I was under there did blood tests but that was all. He said I had tested positive to Bahama Forest Virus, I knew that would show as I’d had it 30 years earlier. I was discharged from hospital after 5 days with no idea. But the swelling had gone down although I was still sore.
Two weeks later I discovered my legs and feet were swollen and hurt and I also had a red fine rash up to my knees. I couldn’t get an appointment with Dr until the next afternoon. She immediately said she thinks I have Parvo and did blood pressure (a bit high) and blood tests for platelets, eGFR and Parvo. I was to come back later for the platelet result, was s little lie but ok. I wasn’t, rash was worse and blood pressure higher. She was to phone me the next day with results. I was close to the surgery at 4pm so decided to call in. She took my blood pressure 198/95, eGFR was low 26, and was still waiting for Parvo result. She thought I needed to be In Hospital due to BP and kidney function so off I went again. Blood tests were done but revealed nothing new, I was told however that I had tested positive the first trip to hospital for Parvo but that had to be a false positive. 2 days later I developed a killer headache but the Dr in hospital refused any medication saying I had a simple headache. I discharged myself and went to Base Hospital where my BP was 215/112 and they retested my kidney function and then gave me Endone which reduced the headache to bearable. I was then transferred to the other private hospital in town. I was treated with Prednosoline for 2 days then weaned off over 5, given anti inflammatory drugs, barrage of blood tests and an MRI of my brain and neck. I was discharged after 7 days and told to folllow up with my GP in a week. I couldn’t wait a week, the headaches were too bad. She told me that everything seemed ok from all the blood tests and what the hospital Dr had left in a message to her.
In effect I had tested positive 3 times to Parvo Virus and was to do the test in 3 months, to try taking Lyrica to help with the headache for a week. I saw the GP a week later and headaches have not gone. BP had come down to reasonable but the kidney pain I have been having was still there and Lidney function test was still only 37, so I was sent for an ultra sound scan. I’m now awaiting the result of that but have now got pain in both kidneys. I have stopped taking the anti inflammatory tabs and Lyrica in the hope my kidney function improves.
As my immune system has taken a hit I now have caught another virus, a sore throat and a bit of a cough. But that has not developed to much. I’ll update when I have more.
After reading your blog I am concerned that my symptoms may continue as this has been 7 weeks now and I have had the full compliment of symptoms and they seem to be staying around.
Jamie Mlsna said,
February 21, 2018 at 2:54 pm
Hi
I’m glad to have found this blog. I was diagnosed with parvovirus B19 in October 2015. I was fortunate that my primary provider recognized the symptoms I had been dealing with for several weeks before I went to see her. I was unfortunate that she seemed to know the virus existed but didn’t know anything about it or any treatment options. After doing my own limited research, I thought I would be fine in a few months. Nope. It took me 8 months total that first round to get back to normal. I’ve done better research since then but I’m amazed how little info is accessible. Now I feel like I’m having a relapse, but I no longer have a primary provider (she left the practice and I haven’t found a new one on my insurance yet) so I made an appointment with an infectious disease specialist. Does anyone have any suggestions what questions to ask or what tests to ask for to determine what’s going on? My appointment is tomorrow morning, so I know that’s not a lot of time. I just found this blog yesterday and since I’m new I took some time to read before posting. God bless you all, and thanks in advance.
Jamie
Leslie said,
February 21, 2018 at 9:04 pm
Hi, Jamie – I would request blood work, to include the parvo virus B19 IgG and IgM, which would indicate exposure to the virus in the past and/or ongoing infection. The IgM will probably be negative, because that indicates acute infection, but both tests can include levels of viral activity. The other thing is to request a parvo DNA by PCR test. That indicates persistent virus, and can also include the copy level. A year and a half after my initial infection, my DNA test was positive with a continuing significant viral copy level. All this aside, and not to discourage you, there isn’t much medical professionals can offer. IVIG is sometimes a treatment, but it is very very expensive, not readily approved by insurance companies, and considered “empirical” treatment – at least according to my doctors. I had 2 IVIG treatments with no tangible results, pain relief or reduction in my parvo levels. For the first 2 years of my illness I felt like I was chasing a ghost, trying to understand the illness and finding treatment. Reading through the many posts here will offer some helpful advice in healing. You have to sort through what seems reasonable to you. Best wishes.
Jamie Mlsna said,
February 23, 2018 at 2:20 pm
Thanks for the advice. The specialist I saw actually thinks I was misdiagnosed, so this could be a long road. He took me through all the lab results from my original diagnosis and pointed out 2 that may mean I have a tick-borne virus rather than parvo. He ordered a new round of labs, and wants to rule stuff out before trying to treat symptoms. I’m grateful that he isn’t a pill-pusher, as I often have odd side effects from medications. I’m willing to work through this with him because he seems very thorough in his information. He brought up the treatment options for parvo before I ever asked, and generally seems to be very much a person who likes answers not just information. We’ll see how things go, and I’ll post results in here when we get them.
Jamie Mlsna said,
March 10, 2018 at 1:19 am
Well, after all is said and done (so far), my current condition is being called a sequela from my original parvo B19 exposure. Basically, the specialist I saw got the lab work back and ruled out tick-borne stuff, and the original workup back in 2015 had a very very high IgG count as well as a very elevated white cell count, so his conclusion is that I currently have no active acute infection. I have myalgia (muscle pain and weakness) and some arthralgia (joint pain) which are sequelae (aftermath or cascade conditions) of the 2015 parvo infection. The specialist and the nurse are telling me this could come and go without any pattern. So now I would like some ideas for non-medication muscle pain management if anyone has ideas that have worked for them. If I find anything elsewhere I’ll be sure to share it in here as well. Thanks.
Deanna said,
March 18, 2018 at 11:55 am
http://www.wycoffwellness.com/treatments/ultraviolet-blood-irradiation
Describes treatment here.
pammy said,
April 17, 2018 at 2:58 pm
i have had such a medium case of it. Got it from either my son or one of the preschoolers i work with. I hope you’re with the right specialist now! hugs.
Jim Willenbring said,
May 21, 2018 at 2:57 pm
I first got sick around 2004 and suffer every year. Fall-Spring is the worst. I’m just tired of being sick. My muscles are attacked the most so it’s hard to stay active. It’s like doing 100 sit-ups your first day at the gym and the pain you feel the next day never goes away for months.
Norma said,
July 16, 2020 at 8:32 pm
Does anyone have restless legs with this also? Just diagnosed but been suffering with symptoms for awhile. Pain was so bad when I got home from work yesterday that I cried. Researched on internet and it seems like there is not enough information on this. Reading about your experiences make me scared but also hopeful.
Thanks!
serenamuse said,
July 17, 2020 at 1:24 am
Yes, I used to have terrible restless leg. I have found that wearing pressure point slides around the house make a big difference for me. I bought the Addidas ones that have the foot bed made of poky things. The pair I bought two years ago were much better than the new ones I bought this spring. I may try another brand. You want them to hurt when you put them on.
Norma said,
July 17, 2020 at 2:25 pm
It’s so good to have come upon this site. Seeing that a lot of the symptoms I have is what you all have. I thought it was all just a part of getting older. (I’m 51) It sucks though. My body, on most days, feels like it’s trying to recover from a marathon cardio/weight session! My muscles and joints hurt so much. The stiffness really sucks. I hate that I am so stiff and achy when I get up. And I am embarrassed because I have to move so slow just to get my body going again. My doctor is referring me to a joint specialist. But he prescribed me Tramadol and I am hesitant to take it because I don’t want to become dependent or addicted to something. Why is there not enough information about this virus other than the generic “it can last a few weeks to a few months” line? I was lucky that when I told my doc my symptoms that he added parvo to my bloodwork request.
serenamuse said,
July 17, 2020 at 5:16 pm
Sadly, I would have hoped by now there would be more information, but I imagine there is no funding for research. Also, in light of this pandemic I am even more cautious about exposure to other viruses. Once you’ve had Parvo b-19 you know never to underestimate the power of a virus to mess up your body for good. I’m not on any medications and that works well for me. I eat a very clean vegan diet, lots of raw veg and fruit every day. Interestingly I rarely ever catch a common cold or flu. I may feel myself starting to get sick, but it never really materializes. So that is one good thing…I don’t know why it is. Perhaps it’s the immune system on overdrive or all the healthy food?
Susan said,
July 17, 2020 at 8:00 pm
Hi,
There’s a Facebook group that’s fairly active and supportive. “Adult Parvobvirus and B12 sufferers“ It’s private and you have to join, but a lot more active and you can find some helpful tips. But there aren’t a lot of treatments. I’ve had it over 25 years now.
Susan~
Susandouglassjone@gmail.com
serenamuse said,
July 17, 2020 at 8:11 pm
Thanks Susan. Yes, people have moved away from blogs, but I feel it’s still useful to keep this one up. It can be easier to navigate than fb posts.
Beth said,
August 29, 2020 at 12:41 am
I totally hear what you are feeling I contracted Parvo from a student in my early 40’s I’ve been suffering for over 8 years. I’m as well on Cymbalta 80 mg and it helps with joint pain, nothing helps the swelling . I went for IVIG treatments in hospital 5 days at a time. Every 3 months it helped for three months and then symptoms returned with pain and swelling.
The Side effects to IVIG for me as I took the treatment was migraines, nausea, joint pain, extremely painful at iv sight and it striped my veins that was the worst part my veins couldn’t handle the drip on a regular flow so I had to do each treatment over 12 hours. But at the end it took me out of pain . Unfortunately insurance won’t pay anymore so I live in pain. I find hot tubs do help with the joint pain but it comes back it’s just a short term help .
Good luck and if you find any cure please let all us know who are suffering .
Beth
serenamuse said,
August 29, 2020 at 5:13 pm
Hi Beth, sorry to hear you are in such pain still. I really have managed the pain over the past ten years with a clean vegan diet. Any time I feel a flare up, I make sure I’m eating massive amounts of leafy greens. Make a big bowl of salad in the morning and make sure it is gone by dinner. Is it a cure? No. But it does give my body the fuel it needs to fight in the inflammation.
Gina Edwards said,
October 21, 2020 at 9:55 pm
Wow!!! So grateful to find you. I had Parvo while pregnant. I have not been right since. How were you diagnosed?
Mikaela Bruns said,
November 26, 2020 at 12:56 am
Are we all fair-skinned?
I’m writing this in 2020.
Ok my children had “slap-cheek” (Human Parvovirus) 25 years ago, were diagnosed by our gp. They had the rash etc etc ….
I contracted it too. I had the rash on my lower limbs .. it was a purple mess after it subsided then went away. Since then, every Christmas I get such fatigue, am not hungry, I’m achey and I have to stay in bed for a few days. When I do get up to urinate or get some food which I’ve no appetite for my body feels weighed down. In the past if I have to cook a meal I have to bring a chair and sit down to prepare it. I forget things easily and my shoulders ache.
That’s probably how this insidious disease pans out for me and it seems to always be around Christmas time when the weather is getting warmer.
It’s debilitating as I have no energy, I ache and just want to sleep.
Kristy said,
February 19, 2021 at 5:20 am
Hello my name is Kristy and I have had Pavo since I was a child say around four or even sooner than that I am now 39 and I am having a lot of difficulty finding a doctor or anyone that’s willing to treat me let alone help me get some relief. I have suffered since I can Remember and over the past year and a half it has become worse where it affects my whole gastrointestinal organs and I believe it’s affecting my liver being as my liver enzymes are high. I’ve had every test in the book done and no one seems to take this parvo virus serious. I’ve been a guinea pig to so many drugs Ive had every symptom treated separately as if it was its own and I’ve even been told I have bipolar which I don’t …you name it doctors deemed I had it. I found out that five years ago Parvo was on my bloodwork and the doctor never told me and I overlooked it as well. so here we are two months ago I’ve been told I have Parvo and it’s STILL not being taken serious. Ive researched n I’ve come to find out that all my symptoms are a result of chronic severe parvovirus. This virus has ruined my life and I have struggled to keep a job. I live in Southern California now. Moved from New York. Happy To read that you have a referral to UCLA I’m going to request one from my Rheumatologist and I hope and pray that he will do so because he hasn’t been doing much for me at all if you have any other suggestions I would appreciate it. It sure I s nice to know that I’m not alone in this. My prayers go out to you and I hope you find and seek treatment with the IVIG.
Kristy
Kate said,
June 25, 2021 at 11:39 am
Hello,
I got parvo about 4 years ago from my toddlers. The virus was mild enough with a cold and mild rash. A week later I woke up to swollen painful hands and fingers. The joint pain spread over the next couple weeks to the rest of my body before vanishing as quick as it came. I was fine again until the following year when I started feeling the same wrist pains, finger pains and migratory joint pain I had felt with parvo. This pain didn’t last more than a couple weeks so I shrugged it off. But now every year as autumn falls I get the same joint pains in my wrists, elbows and especially my fingers. This year it has been very noticeable and I finally went in for testing thinking that it couldn’t possibly still be parvo. Tests have come back clear and I’m non the wiser. I have found this year that when I’m run down with a virus the joint pain in my fingers comes back quite badly! I just can’t understand how it could still be parvo but nothing else makes sense. I’m 37 years old. Has anyone had similar experience of when sick or run down joint pain returning or as the cold months approach. Health and happiness to all. Kate