April 20, 2016

We are back and Live!

Posted in Uncategorized at 3:19 am by serenamuse

Terribly sorry. I have been locked out of the account for months, it wasn’t accepting my pass word and would not let me change it. No live support available. Left a bunch of messages on the blogs and someone must have done something because finally I am in again! I have gone through and approved all pending posts. I’m so sorry for the delay. I hope you can all get chatting again right away. Here’s to good health and very little pain and exhaustion!



  1. Deb said,

    Hi. I tested positive for parvo b-19 over 6 yrs ago, but my doc at the time wasn’t convinced it was the cause of my symptoms ( they were mainly muscular atrophy and neuropathy). After seeking other docs I wound up with a diagnosis of latent chronic Lyme disease. I believe that to be the culprit, but I’m curious if anyone has had the overlapping of these two infections? The fact that I’ve now been treated 4 yrs for Lyme and still suffer dibilitating symptoms makes me think there’s a parasite going untreated. Thanks for any insight/clarification!-Deb

    • Heidi Rosenfield said,

      Hi Deb, I tested positive for Parvo B-19 in 2012 and initially hospitalized for severe joint pain and swelling, it left me disabled for months unable to work… prescribed mass amounts of steroids and pain meds, but my symptoms never went away… Fast forward to 2013, i was diagnosed by a rheumatologist with rheumatoid arthritis, fybromyalgia, neuropathy, and CFS…. then, in 2015 after a scary incident of sudden amnesia…which led to more doctors and more testing, I tested positive for Lyme Disease! Now im seeing an LLMD and currently undergoing treatment for lyme….

      Very interested to know if there are others who have similar stories too!!

  2. Katie Miller said,

    Hello all….sure is nice to hear some familiar stories. My story is similar..my son came home with parvo fall 2014 ..he got over it, and I went into an auto-immune freak out for a year. I didn’t really begin to feel like myself until last June. I can relate to the hand and foot pain…whenever I start to flare now that is where it begins. Will we always flare when we are exposed to a virus? I guess I had this hope in the back of my head that it would stop at some point. Also, has anyone been exposed to Parvo again since their reaction?

    anyone know?

    • serenamuse said,

      Since it is airborne it would be very difficult to know if you were exposed again, but it is likely as over 90% of people are exposed as a child. That means there is a good amount of Parvo out there. As far as “always” who knows. There are so many variables and everyone is different. Since you are still fairly early in your parvo path, there is a chance you can beat it, really take care of yourself, high nutrient foods, rest, exercise and relax – whatever that means for you, yoga, mediation, a pain therapist can be really useful too.

  3. Manny said,

    Hi. My blood work shows I was previously infected with parvo but they tell me it is not presently active. I have been going to the doctor with recurring symptom that seem to flare up about once a year. I am presently experiencing them thus the most recent visit to the Dr. The flare ups can last about 2 to 3 months. The doctor tells me the parvo may explain the this. Can that be even though it is not presently active? My symptoms are usually the same each time. Continual nausea that only goes away when I eat but returns shortly after. It can be bad at night but drinking water periodically when it wakes me seems to help. Fatigue that sometime feels like I can barely make it thought the day, not tired just like some short circuit across my battery is how I could explain it I guess but its a bad feeling. Joint pain mostly in the hands and feet where its the joint closest to my hand or foot not the further out joints and I say mostly because the toes and fingers hurt too sometimes. Also wrists, ankles, hips and knees. The joint pains travel to different joints almost daily and ones that hurt yesterday may feel fine today. I am 56 and this has been going on since 2011 so about 6 years. Lyme tests shows only band 41 reactive on IGG and IGM, C-REACTIVE PROTEIN tests show no inflammation. Food allergy tests all neg. I have been seeing the local family practice but am looking to set up an appointment with an internal medicine Dr. Does this sound parvo related?

    Thank you so much for you time.

    • Ann said,

      I have been diagnosed and suffer from the exact same symptoms with no relief since 2012,I’m at a loss …Tired of feeling sick all the time.

      • Jean Steele said,

        Hi Ann, I am just starting and my Parvovirus is more exhaustion and in my left hand. Which of course I can’t close. Serenamuse has used diet very successfully. She recommends Dr John Furman book Eat to Live. Read her April update about. I am going to try Diatomaceous Earth. It says it can get rid of viruses. My mom is on it with her friends and is having great success with her Arthritis, which she has had since 21. She is now an active at 73. As I said I would consider me a mild case. Although, I have heard that it can get worse. Good Luck Ann
        Sincerely Jean

    • S. said,

      I’m not a Dr but if I were to guess at if this is indeed Parvo related, based on comparing your issues to mine, I’d say yes there is a good chance this is related. I’m 55 and had various health issues after being infected 26 years ago. These days they say my issues are from Fibroymyalgia, but Mayo Clinic told me the problems are from Hashimotos Disease. All I know is I had the Parvo before either of those DX and back then there was no treatment for Parvo and patients were told to go home and rest and within 2-3 weeks we would feel better. I’m still waiting …

      I wish you the best and hope you can get some help and answers. I’ve done tons of various lab test over the years, pretty much everything coming back fine while I continued to feel terrible every single day. I can’t even call them flares since every day is almost equally bad now. Not having a firm diagnois or label for why you feel so lousy can make a person feel like they are losing there mind and it is so hard to describe to others what we go through without that name for our problem. Could you please do a followup post here as things change for you and maybe something will help someone else in their journey.

  4. Tania said,

    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

  5. Doc Boyd said,

    Manny: I had a raging b19 infections from 1997 to 2001. In that 4 year period I had symptoms very similar to yours. Fortunately for me the virus continued to weaken and eventually by early in the 5th year I was having almost no symptoms. The fatigue and joint aches were just infuriating to me. I had gone to an infectious disease specialist and even they could not figure out what was wrong. Finally a doctor who is a friend of the family said I should get checked for parvo just by listening to my symptoms.

    Stress seems to make the virus effects linger and persist. I’m sure that the diet suggestions on this blog are also very valid. I am clear of symptoms since 2002. The reason I’m looking into the blog now is that my wife seems to have contracted it recently.

    Has anyone taken an antiviral drug like Aciclovir and been successful (or not)? I’ve seen a study from the Netherlands on this and it was helpful for a patient suffering from b19 causing myocarditis.

    Any background on drug therapy would be useful. Thanks, Doc

  6. Claire said,

    I apologies in advance for any repetition of previous posts – there are so many I can’t read them all. I just read the very first one – the site looks to focus on results – so I thought I’d add a quick note on my experience with parvovirus in the hope that it may help someone. I randomly met someone with almost the exact same experience with parvo the other day, so it’s not just me.

    I got parvovirus as an adult, usual joint inflammation etc, then the post viral chronic fatigue, all pretty typical and exhausting. I got through it by exercise, sounds odd, but I swam every day with what energy I had, only finding out from a chronic fatigue specialist years later that this stimulation of the adrenal glands through exercise is actually a recommended therapy. I’m not making light of the debilitating tiredness, it was not easy! But I got through.

    Next, however, I thought the chronic fatigue was back. I was constantly exhausted by 3pn, had trouble sleeping and was low in mood. I was also quite puffy in the abdomen by then end of the day, leading me to get food allergy testing. Turned out all the messing around from parvo and its resulting auto immune reactions like arthritis and fatigue also can trigger food issues. I now have fructose malabsorption and sorbitol and mannitol too. The other person I was talking about ended up gluten intolerant. Once I had been tested, with a confirmed diagnosis, I amended my diet and suddenly was awake, it was fantastic. Managing your died is tricky, there can be slip ups, but I would encourage anyone with a similar symptom path to get tested. Self diagnosis or randomly giving things up is rarely useful – for example I got symptoms after eating wheat so may have decided I was gluten intolerant, but testing showed I’m not – guess what, wheat contains fructans, chains of fructose molecules! So, it’s complicated, I recommend you look for doctor assistance to make sure that this is actually your issue.

    I hope this can help someone, take care,

    • serenamuse said,

      I had not thought of getting tested for food allergies. Sounds like a good idea. Thanks.

    • Tania Caputo said,

      Claire – did you simply ask for a food allergy test from your family doctor or was this through a specialist who understood parvo b19?

  7. jill w said,

    I’m new here and just figuring out things – I’m 47 with three kids and was hospitalized in May with acute hepatitus, which we learned from the PCR of my liver, was caused by Parvo B19. I first had Parvo B19 as an adult and caught if from my 4th grader. I’m seeing that I had many of the symptoms over the years (5 years now) that match what you all are describing. I just kept going, and simply managed until I lost function in 60% of my liver in May. It seems that this is very rare and I was curious if anyone here had ever heard of such a thing? My blood work is slowly improving and I’m feeling stronger, but we are investigating IVIG and anything else that could help in the future if this attacks again. They don’t know why it happened and no one at Northwestern in Chicago knows if it might happen again. That is a bit frightening, which is why I’m reaching out. I’m looking to solve this issue and guessing that I’m not the first one down this path. But, if I am, feel free to learn from me – I’ll let you know all that I have learned from what has been simply 4 months of basic hell.

    • serenamuse said,

      How are things going Jill? Any improvement?

      • jill w said,

        Well, after 10 months and a second liver biopsy showing continued inflamation a trip to the NIH to participate in a study, and a positive Parvo PCR, we started IVIG. After 2 weeks, PCR is negative and 5 weeks later I feel great. But, my liver is still inflamed and they are wanting to start steroids. So, I have a badly damaged liver, but at least without the active virus, I have one less problem.

      • serenamuse said,

        Jill, so glad that the IVIG helped!

  8. Jean Steele said,

    Doc Boyd, I have only had the Parvovirus since Aug 2016. My husband’s Rhematologist diagnosed it. I read the same article you read and asked my doctor to Aciclovir. She looked at me like I was asking for poison. She said in no certain term “We do not use that”. Instead she wants me to take Plaquenil. So I have decided to go without.

    I have read a 2012 Italian case study on Parvovirus B-19. The three women the followed. Got better on there own after 12 to 13 months. I have noticed mine improving slowly. So I am going to stay the course. I have of people with all kinds of symptoms that I do not have. I have the fatigue and arthritis in my left hand and wrist. So I am hoping for the best. Good Luck Doc Boyd!
    Best of wishes, Jean

  9. Prue said,

    I’m looking for some help! My daughter brought home parvovirus just before Christmas. I ended up with it unfortunately. It took them 3 weeks to diagnose even though I was telling them to test me for it. So I’m 12 weeks down the track and don’t really have any pain anymore but I have lingering fatigue/exhaustion some days I have energy in the morning other days none at all. I have two young children and I’m struggling. It started with a cold then pain in my elbows. I ended up in hospital which discovered that my right lung partially collapsed. I was dizzy on standing and had no energy at all. Bed ridden completely for three weeks. I can get up now and do a few things but spend most of the time on the couch. Dr says 3-6 months to resolve the fatigue. Has anyone else had the same and recovered? All my blood tests have been in the normal range. My immune system tests are normal. So frustrated as I can’t function but on paper I’m completely healthy or so the drs are telling me

    • serenamuse said,

      I’ve not heard of others with the collapsed lung, but it is very common for doctor’s to tell you the tests look fine, so you should be feeling fine. I was better after the first year, but about a year later it all came back and did not improve for seven years, till I went mostly raw vegan. That was yet another seven years ago, I’m always striving to find the next thing that will help, still vegan, but trying to balance a heavy work load and the fatigue and chronic pain that recharges with stress and overdoing it. Acupuncture has helped, massage has helped, meditation, seeing a pain therapist has helped, working with a trainer who paced at my level helped, korean facials are helping at the moment- two hours of pure relaxation bliss. Nothing lasts for more than six months or a year. Then I try something new. It takes constant vigilance. NO quick answers for this disease, not yet at least.

    • S. said,

      It is frustrating to appear totally healthy in all your lab work, but feel so awful. I got the Parvo in 1991 and it’s been a very long haul of pain fatigue and other symptoms. I’ve never heard of a collapsed lung with this either although I do remember getting a very bad case of pneumonia and pleurisy about 7 weeks after I caught the fifths.

      The only thing I relate to people who have had so many normal test result but still feel terrible is to consider the thyroid as a source of problems also. Post parvo invection, after feeling lousy for years, and many “normal” thyroid tests, A Brillant Internist at Mayo Clinic got the idea to test me for the thyroid antibodies showing a person has Hashimotos (stuck on remembering the test name but reply to this message and I can search for it if you think it would help you), even though all those TSH, T3, T4 and T7 tests I’d had were normal and Bingo! That number was suppose to be very low, like under 16, and it was in the thousands. I’ve been treated with thyroid meds ever since but had no real significant improvement. I’ve just been pondering recently the theory out there that Hashimotos (autoimmune throid) shouldn’t be treated the same as Low Thyroid because they are different diseases.

      Gosh I wish there had been blogs like this when I first got ill. Not even the Dr.s had heard of all these problems besides just a rash. Learning from each other and what we have tried and how it works is a big step in finding relief.

      Please keep us updated and Good Luck.

  10. Julie said,

    Hello, I have only had parvo for a week. My daughter started it on April 16 and then my other daughter got it May 1st. I began to have symptoms on May 8. My doctor said he’s sure I have it. I have major swelling in my legs, ankles and hands and some on my face. I understand that it’s only been a week, but I’m scared and looking for hope as to any homeopathic remedies I could take to get this out of my system. It’s awful.

    • Jean Steele said,

      Hi Julie,

      I have had Parvovirus B-19 since August 2016. The swelling for me, lasted through the winter. Now with spring and warmer weather, I don’t have as much pain and swelling. Serenamuse, whose site this is. Has been successful on a Vegan Diet. She has older posts regarding the diet. There is no fix for parvo. Just having ups and downs with this nasty diease. But I believe, we are all here suffering in different degrees, to lend support. So my hope for you, is that it will get better.

      Sincerely Jean

  11. serenamuse said,

    I have flare ups, but have shortened the duration by knowing how to read my body. Stress, too much work, too much on my mind, seems to set me off. I know if I retreat from life as much as possible, say no, stay home, sleep, eat lots of power greens, spinach, kale and all vegan whole foods, unsweetened cranberry juice diluted with water and a pack of stevia (for swelling) that I will eventually come out of it. Usually in a week or two. I did have to take a day off work a few weeks ago, to give myself a four day weekend to do just that. Then on my teaching days, rest, have my husband bring me veggie sandwiches with extra spinach, and don’t do anything till I have to go to work. I only teach afternoon and evening classes as I know I need to sleep as long as possible in the morning, that is when my rest is best. You learn what will work for you, but be aware, your symptoms will always manifest a little differently, it’s never boring, keeps you guessing!

  12. Wowpoetry said,

    Hey there all,
    I know nobody has posted in months, but I am just desperate for some answers. I was diagnosed with Chronic Parvo B19 by an internist, in August 2016, who said I’d probably had it since sometime 2015. My biggest question is, does anyone have increasing symptoms, or more degeneration over time? Or is it just a long recovery from the symptoms at diagnosis? I have had joint problems (especially my knees), memory lost, fatigue, but now, over 2 years from contraction, I have developed neuropathy (with all tests coming back clean), cognitive failure (I can’t remember words, my speach can be garbled, and my memory is nonexistent… I stand up and forget why.. THAT quick), I have no spacial awareness whatsoever, and constantly walk into things, I bruise SUPER easy, and have developed muscle weakness as well. To top it off, I now get drenching sweats and overheating, for no known reason, where as before I literally would not sweat unless it was over 100* out. They have started looking at MS and Lymphoma, with all tests coming back clean. I had lymes for a year when I was 5 (one of the first cases in my state, I’m in the record books), but lymes tests are actually coming up negative, but I have also developed Pernicious Anemia (my body cannot absorb or make B12 on its own, I need shots every month), and have had kidney stones and a kidney infection for the first time in my life. They also took out my appendix, thinking it was causing a problem (I get severe belly pain out of the blue), but when they removed it they said it was fine, and didn’t actually need to come out. ANY ideas/suggestions/help would be desperately appreciated! I wouldn’t wish this on anyone, and I’m sorry so many of you feel similarly.

    • serenamuse said,

      I’m so sorry you are going through this. Unfortunately, what you describe sounds very similar to what most of us experience. My infectious disease doc, many years ago, explained that the virus changes how every system in your body works. The virus never really leaves, it lives in your bone marrow, and will recharge at times of stress etc. Anytime anything new and weird starts happening to me I go to the doctor, head to a specialist for whatever it is, bladder pain, cognitive issues, jaw pain… you name it. They do the tests and come back with “nothing is there. This is a result of chronic pain. It is just manifesting in a new way”. So I figure out how to live with it. Eventually the new weird thing will settle down and eventually I get another new weird thing. I just do my best to listen to my body, and take care of it as best I can. I’ve made changes in my life to avoid stress, manage stress better, eliminate people in my life that cause stress. I protect myself and often that means coming across as a real bitch! But I have to. I wish you luck! Oh and I do take B12 every day. I tend to test low on that.

    • jill said,

      I had many of the same issues for 5 years and then ended up with near liver failure – they think that it was autoimmune (AIH), but no one is 100% sure as Parvo also lives in the liver. Regardless, those of us with chronic Parvo typically have an immunosuppressive disorder of some sort. Mine is rare and unnamed. That said, have them run a PCR test for Parvo B19 to see if it is present in your blood. If positive, as mine is – I have been treated successfully symptom wise with IVIG – which is an transfusion of immunoglobulins from blood donors. It literally has given me my life back. joint pains gone, brain fog gone, my energy is back. So, my advise is to get your liver enzymes checked – especially with the belly pain – and the Parvo B19 PCR and ask about the IVIG. There are also case studies that suggest that high dose vitamin C has helped some. So, get yourself to an infectious disease doctor and continue investigating. I am left with pretty bad liver damage, but feel just fine – 85-90% of normal – and when the Parvo PCR # go up, my symptoms return. I even did Disney World with 3 kids last week – no pain or weakness – that is about as normal as it can get. The IVIG is very expensive and took a hemotologist who was aggressive with the insurance company to get them to support payment. So, find some supportive docs – mine are at Northwestern University in Chicago – and best wishes!

      • Cindy said,

        Dear Jill,
        Thank you for this post! My husband also has been told AIH, BUT now we are thinking AND NOW suspecting Persistent Parvovirus B19 associated Chronic Hepatitis. ( just last week tested positive for a B19 PCR!) I am very interested in connecting with a group like yours because my husband ( a former competitive runner/ triathlete) was acutely ill in 2009 and diagnosed/ admitted @ UCLA Medical Center for 2 weeks, then PV B19 symptoms returned in 2010, we went back to UCLA……AND after a 9 year remission…. 2 months ago, during the SB FIRES/ MUDSLIDES ( extremely stressful time!) his symptoms returned, WITH Acute Hepatitis/ he had an abnormal liver biopsy, . We are meeting with UCLA/Hepatology next week…..very scary and uncertain…..searching for experience, strength and hope in dealing with Persistent B19.
        Question – What type of doctors have been helping you in Chicago, ( infectious disease, or rheumatologist, or hepatologists?)
        Has anyone had their bone marrow, liver biopsies for B19?
        Thank you,

  13. Leslie said,

    Hi – always interested in new posts. I was infected with parvo in the spring of 2011. I’ve had a laundry list of severe and bizarre health problems ever since and closely associated in time to my illness: neuropathy and fibromyalgia (intense and body wide), colitis with significant weight loss, and most recently psoriatic arthritis. I was PERFECTLY healthy before parvo. I’ve tested positive for parvo DNA via PCR for many years. I’ve been told that the positive result is not necessarily an indication of continued viral activity – that it may only indicate inactive viral remnant. I’ve also been told it can harbor in various organs, and that even then the significance is unknown. Good luck trying to find a medical professional to recognize it and figure it out – sorry, but the honest truth based on my experience. I’ve been everywhere, including Cleveland Clinic. I’ve had two rounds of high dose IVIG, considered empirical treatment, with no reduction in my IgG or DNA result, so there was no advocacy for me to continue. Nonetheless, best wishes for successful treatment.

  14. Leslie said,

    Jill, I read your post above from April 2017. You mentioned the NIH. I’m wondering, did you see Dr. Neal Young? I went there myself for a consultation. They took 29 vials of blood – yikes! – for research purposes, and I think it may have assisted in my 2 “empirical” IVIG treatments. But really, it didn’t result in a “cure” or clearance of the DNA. So when I said I’ve been everywhere, I meant it. NIH, Cleveland Clinic, neurologists, rheumatologists, infectious disease, orthopedists, innumerable appointments with my internist, massage therapists, trigger point therapy, accupuncture… makes me sad just listing them all. I was truly wrecked by this virus. All my reading about fibromyalgia and autoimmune disorders seems to indicate a triggering event, and for many of us it was parvo. I so wish it was more recognized and understood by the medical community for more than just a passing, mild viral illness.

  15. Leslie said,

    A question for anyone interested in replying. Do you find that vaccinations set you back in your overall wellness (or illness)? I got a tetanus shot a month ago after an injury and I’m just exploding in pain. I debated not getting it, but the doctor convinced me that given my immune compromised health I should get it. Thanks for replies!

  16. serenamuse said,

    I had a doctor at Loma Linda tell me that years of experience showed her that patients who suffered from Parvo, Epstein Barr, and such chronic illnesses were far more likely to respond badly to vaccinations and flu shots. She told me to make sure the people in my family, close to me were getting their shots, but to avoid it myself.

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