Resource Page

Articles on Parvo virus (all these are available on the web via google without any subscription fees etc):

 

http://www.aafp.org/afp/991001ap/1455.html This gives a good general overview of the virus.

Human Parvovirus B19 Infection: Autoimmune Disease Trigger,Elaine Moore, http://autoimmunedisease.suite101.com/article.cfm/human_parvovirus_b19_infection

Preexisting Psychological Stress Predicts Acute and Chronic Fatigue and Arthritis following Symptomatic

Parvovirus B19 Infection, Jonathan R. Kerr, and Derek L. Mattey, Clinical Infectious Diseases 2008; 46:e83–7

 

Chronic Fatigue Syndrome and Arthralgia Following Parvovirus B19 Infection,JONATHAN R. KERR, JANICE BRACEWELL, IAN LAING, DEREK L. MATTEY, ROBERT M. BERNSTEIN, IAN N. BRUCE, and DAVID A.J. TYRRELL The Journal of Rheumatology 2002; 29:3, 595-602.

 

Successful Intravenous Immunoglobulin Therapy in 3 Cases of Parvovirus B19–Associated Chronic Fatigue Syndrome, J. R. Kerr, V. S. Cunniffe, P. Kelleher, R. M. Bernstein, and I. N. Bruce Clinical Infectious Diseases 2003; 36:e100–6, http://www.journals.uchicago.edu/doi/full/10.1086/374666

Presented in part: 9th Parvovirus Workshop, Bologna, Italy, 28–31 August 2002.(I thought this was interesting – did not know they were having conferences on this thing!)

Financial support: Chronic Fatigue Syndrome Research Foundation.

Reprints or correspondence: Dr. J. R. Kerr, Dept. of Microbiology, Royal Brompton Hospital, Imperial College London, Sydney St., London SW3 6NP, United Kingdom (j.kerr@imperial.ac.uk).

 

Parvovirus B19 Infection – An Emerging Infectious Disease?

Galia Rahav MD, IMAJ . Vol 4 . October 2002: 810-811

Correspondence: Dr. G. Rahav, Dept. of Clinical Microbiology and

Infectious Diseases, Hebrew University-Hadassah Medical School, P.O.

Box 12000, Jerusalem 91120, Israel.

Phone: (972-2) 677-6594. Fax: (972-2) 641-9545 email: rahavg@md2.huji.ac.il.

Possible induction of systemic lupus erythematosus by human parvovirus, A P Cope, A Jones, M Brozovic, M S Shafi, R N Maini, Annals of the Rheumatic Diseases 1992; 51: 803-804

Parvovirus B19 Infections

CAMILLE SABELLA, M.D., and
JOHANNA GOLDFARB, M.D.
Cleveland Clinic Children’s Hospital, Cleveland, Ohi

http://www.aafp.org/afp/991001ap/1455.html

Book List:

eat2live1Eat to Live: The Revolutionary Formula for Fast and Sustained Weight Loss (Paperback)

by Joel Fuhrman (Author), Mehmet Oz (Foreword) “Americans have been among the first people worldwide to have the luxury of bombarding themselves with nutrient-deficient, high-calorie food, often called empty-calorie or junk food…”

This book is not just for those who need to lose weight, it if for anyone trying to fight disease.  Following his eating plan has helped me more than anything else.

http://www.amazon.com/Eat-Live-Revolutionary-Formula-Sustained/dp/0316735507/ref=sr_1_1?ie=UTF8&s=books&qid=1241585996&sr=8-1

bookEncounters With the Invisible: Unseen Illness, Controversy, And Chronic Fatigue Syndrome (Medical Humanities) (Hardcover)

by Dorothy Wall (Author), Nancy, M.D. Klimas(Foreword)
This book really helped my family to understand what I was going through. It helped me to realize that I was understood.

Films/Documentaries:

 
I Remember Me
 produced by Kim Snyder, released in 2000.
Available on Netflix.
 
Kim Snyder was a filmmaker looking forward to her next project when, one day, she was overcome by what she thought was the flu — but later found out her disease was much more debilitating. In this touching documentary, Snyder chronicles her struggles with Chronic Fatigue Syndrome, an illness that’s still a mystery to many doctors. Includes interviews with other famous sufferers, including director Blake Edwards and athlete Michelle Akers.
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23 Comments »

  1. alexandra said,

    Hello,
    I was just diagnosed with this a few days ago. They are starting me on Plaquenil today. I have been getting worse every day. The pain is terrible and I have suffered through 2 ruptured back discs so I know what pain is. I can barely walk through my office today. My doctor told me earlier that they really don’t know a lot about it and it can last years, worst case. I feel totally helpless. I am a single mother of a 5 yr daughter. Last night I couldn’t even hend her a dinner plate and dropped it on the floor. I am at work by sheer will I guess. Can anyone point me in any direction as far as research, doctors, diet or what to do?

    • serenamuse said,

      Alexandra,

      The good news is that if you have just been diagnosed that chances are you will recover. It is a small percentage of people who get the long term effects. On the bad side, there is no cure. If you read through peoples posts I think you will find that certain drugs can offer some short term relief but nothing seems to last. It is my experience and that of many others that a change in diet can really help your body to fight this off. For me that meant going 80% raw vegan. That means no animal products, including dairy, eggs and butter. I eat lots of leafy greens, fresh fruit, veg, whole grains, lentils, beans, nuts and seeds. I drink herbal and green tea, soy, almond and rice milk. I try to avoid processed foods as much as possible – the soy milk being an exception. Within a week I noticed real difference in the way my body felt. The pain lessened dramatically and my energy levels went up. Basically you are making every bite count – high nutrition. You want to eat things in their original form not changed into something in a package. One book that helped me was Eat to Live. It is listed on the resource page. Do check back and let us know how you are doing. I’m sure some of the other bloggers will have suggestions as well. I wish you the best of luck, my heart goes out to you!

      Serena

      • Julie said,

        Alexandra,
        I have only had this for a month and a half, but I am doing better. I did the best when I could find time to rest. I have no idea what your sick leave situation is, but you need to give your body extra rest. I am blessed to have 2 older children whom I handed over many of my chores.

        I learned to avoid weight-bearing activities as much as possible. This includes driving, turning door handles, turning jar lids, carrying heavy items, lifting heavy items, etc., which are nearly impossible to avoid. Is there anyone who could come help you? A parent or sibling?

        Also, 800mg of ibuprophen up to 3 times a day also really helped me. In the morning first thing, again in the afternoon if needed, and then before bed. I would still wake in the night hurting, but it was bearable. I started sleeping with my arms wrapped around a pillow too. That helped me place my hands and arms where they were most comfortable.

        I just got the book Serena mentioned above, but have been eating differently for just over a week (due to her suggestions). I’m not sure if I’m just at the tail end of this or if it is the diet, but I’m doing everything I can to get over this virus for good, if at all possible.

        Read as much as you can on the virus. It can be depressing at first, but there are some great pieces of advice that others have shared on this blog and other websites that may help you.

        Praying for you!
        Julie

  2. alexandra said,

    Thank you so much for the responses. I just started the Plaquenil and the pharmacist told me to not freak out about nightmares if I get them. I seem to be better in the morning and it gets progressively worse as the hours go on. Unfortunately, both my parents are deceased and I am divorced. My only family is in LA and I am in Tulsa. I have a staff of employees who check on me and help throughout the day, but that’s it. I am my daughter’s sole support system and at 5 she doesn’t really understand. She accidentally hit me on my arm last night and I thought I would come out of my skin. To say it’s hard is quite an understatement. I have done research for work for years and consider myself advanced. However, there just isn’t much out there on this virus. I was thinking of trying an infectious disease doctor. My PCP said they just don’t know much about it, like how long it will last or really how to treat it or how I got it. I could deal with it better if there was a real treatment plan, not just take this lethal stuff and come back in 3 months. As a lawyer with a dr. father, swallowing the first pill was hard. I’m going to clean out the cupboards and frig this weekend and go Vegan. I figure if another Southerner, Bill Clinton, can give up fried pickles so can I! There is a great diet to help people, called the Engine 2 diet. It’s by the son of a famous doctor who is one of Pres. Clinton’s doctors. The E2 diet is a bit easier on you to start with. There is a website for anyone who is interested. It’s very very healthy. Thanks so much for providing this blog. I feel so much better “writing” it out. No one around me understands the pain. It’s like the flu a million times over. Life is too short for bad wine, right?

    • serenamuse said,

      Hi,

      You know it was an infectious disease doctor who was the first to really understand the virus, so I really appreciated seeing him, however, he too said he did not have any answers. The best he could do was try to treat the symptoms with drugs. Nothing worked in the long run. HOWEVER, it has been nearly three years since I saw one, perhaps they have made progress? I really hope you find help with the diet. Feel free to ask for advice or ideas on that one. I am still finding new ways to cope with my unusual eating. I do find that it helps to always have an apple and some nuts in my car for emergency snacks. You will need to eat more frequently to keep your calories up. People tease me because I always have good dark chocolate and a bag of raw nuts in my purse as well! Our here in California we have a chain of stores – Trader Joes – that now have a pretty good selection of vegan salads and wraps that are prefect for me to take to school or on my long days in LA. I’ve also learned that certain types of restaurants have good food for me, Thai, Middle Eastern, Fresh Mex. Oh lately I’ve been making oven fries with sweet potatoes and those are yummy too. You will find food starts to taste really good when you cut out preservatives, sugar and too much salt. Do keep in touch and yes, I know how you mean about writing it out. It validates your experience to see it in text.

      Best,

      Serena

  3. Seana said,

    I had parvo almost 2 years ago, and it took over a year for the majority of the pain to dissipate. Most days now (and I realize I’m lucky) there is no pain. However, about a week ago, I got my flu shot. By the end of the first day after receiving my flu shot, my wrist joints (which were the worst of the “parvo pains”) and ankle joints began to hurt. They have gotten a bit worse – not as bad as when I had parvo but they hurt none the less, and not like the muscle aches that people get w/ the flu shot. I’ve heard of people having “flare-ups” but have you heard of anybody reacting this way to a flu shot? I really thought my body had finally kicked this thing, but now, I’m not so sure.

    • Kay said,

      I have been searching for something to help me after developing RA 4 years ago because of parvo b19 virus. I came across this website and was reading about the Eat to Live book.
      Before taking the flu shot in October, I too was doing alot better, I am taking LDN. After my doctor convinced me to take the flu shot, because I help take care of my 84 year old Father, I now have terrible continuous “flair-ups”. All my joints started swelling with painful pockets of fluid on my wrists and now my right hand is turning. It is all so frightening. (I was negative for RA for several years but positive now) I wish I would have never taken the flu shot but I was afraid of carrying germs to my Father.

      • serenamuse said,

        So sorry you are going through this kay. Yes, it was just this past year with a new doctor that she told me not to get the shot. She said over the years she had noticed that people with chronic fatigue type illnesses tended to have adverse reactions to the shot. She did not know why, but that is what she saw in her patients. I really appreciate a doctor that will make judgments based on observation rather than just going with the science.

  4. Debbie Morrone said,

    I was diagnosed with parvo 1 week ago. I spent 5 days in the hospital because the joint pain in my knees and ankles was so bad I couldn’t walk or even stand.My wrists and fingers were the worst tho I am dealing with the ‘brainfog’ and extreme fatigue.I had a total knee replacement 3 months ago and all the rehab and therapy I did was a waste because my knee is so screwed up.My orthopedic surgeon drained alot of fluid out but it keeps coming back.I had a heart attack 4 yearols ago and DVTs and pulmonary embolism 2 years ago.I also have Factor V, a blood disorder. What is the most effective pain control? I don’t have alot of information on Parvo so any help or information is appreciated.

  5. Charlotte said,

    The connection between Parvovirus and Thyroid Disease

    http://thyroid.about.com/b/2012/03/05/the-connection-between-parvovirus-b19-and-thyroid-disease.htm

    • manxie said,

      thank you Charlotte! common sense reason for why I have hypothryroid and developed it approx two years after parvovirus – 18 years ago! yep taken me that long to make sense of this!!

  6. Charlotte said,

    An inspiring story from a fellow sufferer.

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

    • Heidi said,

      wow, i just was diagnosed with Parvovirus and in the midst of my endless searching, I saw this article you posted and thats my local paper! are you a resident in the ventura county area too?

      • serenamuse said,

        Heidi,

        I used to live in Thousand Oaks, but am in Orange County now.

      • liftedupbyds said,

        I’m, my daughter developed juvenile idiopathic arthritis in late 2010 or early 2011 after contracting fifths disease. At the time we lived in thousand oaks. We just put the pieces together. When did you contract Parvo?

        Also, I think this sounds interesting:

        High dose vitamin c:

        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4326192/

      • serenamuse said,

        I was living in England when I contacted it, in 2002.

  7. Bonnie said,

    Thanks for all your info. I am newly diagnosed and am trying to make sense of it all.

    Bonnie

  8. Steve Kenney said,

    Can I post my Parvovirus story here?

    • serenamuse said,

      Hi Steve,

      Yes, please.

      Serena

  9. AD1210 said,

    I posted on another page, but I looked here on the “Resources Page” to see if there were any listings of any doctors/researchers familiar with parvovirus. I’m in Michigan and would be interested in finding a doctor familiar with treating this.

    THANKS!!!!! 🙂
    AnnMarie

  10. Sally said,

    I posted on here quite some time ago when I contacted parvo in 2012. You may find that if you have parvo that you test positive for several other viruses. Run the whole panel if you haven’t. I’m a nuse, and had exhausted all research so I put it down for a while. I have learned to pace and balance but still am not well so I picked up the research again and recently discovered that many of the coexisting viruses are weaponized. I’m not sure about parvo, but I do know that west nile and mycoplasmas are. (HIV, Ebola, cmv, h1n1/h1n5? (Gotta double check that one), Lyme, and many others are either on the list or highly suspect like Zika.) Google your virus to see if it was a developed bioweapons (it’s declassified) . Horowitz spoke on Rense that crates of west nile were shipped to Iraq in the 80’s. Who knows whether it was leaked in transport, if they did it, or if it came out of one of the facilities such as ft detrick. Gulf war syndrome involved a lot of people with mycoplasma (which is a very small virus sized bacteria that lacks a normal cell wall, thus it can invade any body tissue including organs, the neurological system, joints, blood and cells. Antibiotics can help but must be used carefully so as not to worsen the situation by lowering immune response too much. The body also has to stay ahead of the curve so it doesn’t waste you away. This means helping your immune system do as much of the work as possible, but not letting it get you so down that you cannot fight it. This goes for all the viruses. Horowitz among others (many others) agree that environmental assaults that overwork the immune system leave one wide open to not being able to fight it. Mycoplasmas have been found in vaccine vials. Vaccine overload (too many, too soon/young, especially unclean ones are a big issue. Geoengineering may play a role. Cancer has been linked to viruses. There are treatments. Extra radiation whether it be environmental background from accidents, multiple X-rays, ct scans, consumption of produce or fish high in radiation out of the pacific, etc… Human fetal DNA as well as animal is used to develop the vaccines (it’s actually written in the insert) which your body recognizes as foreign and causes an acute response, but rarely gives lifelong immunity as if you’d actually contracted an illness and made your own antibodies. Blood transfusions and IVIG can be lifesaving but can have consequences and it introduces another’s DNA which the body sees as foreign and wants to attack. Surgical procedures lower immune response, even worse if it involves implantation of hardware, breast implants, etc… Surgery can be necessary but avoid elective procedures. Vials of meds can also be contaminated. Always ask for single dose vials. I won’t tell others not to vaccinate, but I would suggest you study it a great deal for your children and yourself if you get shots for hep b or an annual flu shot, pneumonia, or meningitis. Gmo foods weaken your immune system and destroy the gut as welll (leaky gut). Read foods carefully. 80+% of corn and soy products are genetically modified, so they can be hidden in oils, and places you might not expect. This is one of the most critical factors because your gut is the biggest part of nutrient absorption and your immune system. Fluoridated water damages the body as well. Only a special filter will remove it. I sought the help of a military physician who is an expert in the field and was very fortunate to find him. There are many people out there who work out of mainstream medicine (who have little understanding of these new emerging illnesses-actually not new at all, just take a long time to manifest class b bioweapons, which is the intent-to disable, not to kill quickly). I was told that I must heal my gut, consume a non-gmo/preferably organic and mostly plant based diet. If your not so hungry, organic smoothies are great. This involves supplements such as probiotics to heal the gut. There are other supplements you can research to help your immune system and cleansing of toxins. If you’ve been labeled with an autoimmune disorder, the immunosuppressants can relieve symptoms but don’t address root cause. Don’t stop without tapering steroids slowly and working with your physician. You may need both approaches. Take this slowly and don’t overdo it because when the toxins are coming out, it can exacerbate those aches and flulike symptoms. More aggressive healing will result in faster progress but is sometimes too much. Listen to your body. Some of the cleansing can include many different types of enemas. Consult a physician first. You must rest if you feel you need it. If you can do a little, PACE yourself because I found during the first couple years, even two hours of fun on a feel good day would result in a crash and burn effect putting me back in bed for days to weeks. If you’re in the earlier phases trying to convalesce and still work, and you feel it’s worsening it, I highly advise giving up to part time or working from home if you’re able, even if it means you have to give up some things or rely on family or close friends for support. You may not look sick, but I will vouch for you to anyone who doubts it, that you are, and you must get proper rest and nutrition to recover. Do not feel guilty about this. That was hard for me to overcome because I didn’t appear sick and everyone always says vigorous exercise is good for you. I’m not saying to stay in bed 24/7, but in this case, if it makes you feel ill, DONT DO IT. I highly recommend swimming for gentle exercise as tolerated. A warm gentle ocean or pool feels great. Will post more later when I think of what I’ve missed. Best wishes. I know it’s hard. Been dealing with it 4 years, but I have made progress. Take extra good care of yourself. Hugs, I know it’s miserable.

  11. Heidi Rosenfield said,

    Wow, thank you SOOOO much for your highly informative comment! you hit the nail right on the head in fact! Since my initial illness/diagnosis of Parvo, i have continued struggling with my health…constantly searching for answers and spending all my time going to see new doctors and specialists. Since 2012 i was initially told I had a positive rheumatoid factor and given a diagnosis of RA…then followed by diagnosis’s of fybromyalgia and neuropathy, sjogrens…. then in 2015, i tested positive for LYME…. which i am currently seeing an LLMD for treatment! Its been a long journey, but im on the path to wellness hopefully! Thank you again for all your suggestions and thoughtfulness! xoxo

  12. Abby said,

    I’m so glad I found this. I was diagnosed with Parvo in 2015. Typical whole body rash and joint pain, negative for RA. I was told symptoms would last a few weeks. Then 4 month later developed pneumonia. Then every cold turned into a respiratory infection. I can’t seem to fight any illness off. I had success with diet changes, eliminating grains, sugar, dairy, and legumes. ( Whole 30 diet). That made the most significant difference for me. I try to use natural cleaning and bath products. I have asked my primary,who diagnosed the parvo, and he said I’m just in a season. My rheumatologist says symptoms can last years. It’s hard to balance a career and the illness. I’m 33 years old and believe I should not get so runned down. i have joint psin flare ups when I catch any cold.

    It’s great to read what others have tried and found relief so that I know what I can try. I was beginning to think I was the only one.


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