Parvovirus B19 is NOT "Just a children's Disease"

Delilah
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Hi,

I sent you an email via the friends link. Hopefully you get it, I have never sent one before.

I got Parvovirus B19 in September 2003 and I still suffer from very debilitating symptoms almost 4 years later! I managed to stay working for one year although I only did it from sheer will power and I suffered greatly. Since then I went onto sick leave and when it expired I went onto long term disability
As I stated in the email I can't help you with your financial question because I am from Canada and I get LTD from my employer. Because I was working part time my LTD is very small so it definitely impacts my lifestyle.

Parvovirus definitely can, and does affect men, women, and even children more severely than is described as "slapped cheek", mild fever and maybe some pruitis. I have done much delving into the available research that is in well acredited journals. In normal people(ie - not immunocompetent)Parvovirus B19 can cause Rheumatoid arthritis, vasculitis, chronic fatigue syndrome, encephalitis, recurring meningitis, meningoencephalitis, carpal tunnel syndrome, Raynaud's phenomenon, and many other diseases. From what I can glean from all my reading, it is caused by the continued presence of the virus in the body. The IgM antibody may not longer be detected in the person's blood, and even the virus may not be detected in the blood because in some people it stays in the bone marrow, or other places in the body (skin, synovial fluid, etc.). It is not the virus itself that causes the problem most of the time, rather it is the body's response to the virus that causes the symptoms. The host human sents out an immune response involving various cytokines and these cytokines are what cause the damage. In all cases, IVIG has been the only thing that has worked to resolve the problem although it does not always work. I think in the cases where it didn't work it was either due to the quality of the IVIG being poor, or else, insufficient treatments being given.

I got one IVIG treatment, which did give me some short term relief. I believe I need at least 5 treatments in a row and then possibly an ongoing regular treatment.

Fight for this. If you do, you may be able to get back to work and earn money!!

16 replies

jfajfa

Delilah
Thanks for replying. I don't even know where to start. Got parvo about 3 1/2 years ago. They put me on steriods after many months of searching for the problem. Actually, I just gave up one day and drove myself to the emergency room at the local hospital. The joint swelling and pain were so bad that I could only walk with crutches. I told them everything I felt, they gave me the steriods and shipped me to the rumatoligist. Then I lost my insurance, my own company, as I was not able to work much.


One wise doctor wanted to wean me off the steroids and put me on pain killers. What a life that would be; joints swelled up so bad that I wouldn't be able to move them while lying in bed. Of course I would not be able to do anything except smile at the kids and slur all my words while trying to talk to them. Wonderful life that would be.


Just took out a loan on the house trying to last a bit longer. Can't get a job anywhere else. In the US they have what is called Assistance or Welfare, that you can get if your down on your luck. I can't get it because the program seems to be set up for workers that got a regular paycheck. I OWN the company so I don't fit the program. (got to laugh about this - they took a look at the amount of income the business brought and said it was too much, way too much, to be in the program. Last year the company brought in about $330,000, down from about $420,000 the year before, however they don't include expences, supplies, payroll, insurance, ect. ect. which works out to about a $80,000 loss. The company will probably fold this year, and then the recurring bills will come in for another year or so (about $65,000 the first year - with no income)).


I'm a pretty tough person and never give up. I type this with tears in my eyes as I need to tell my family, two teenage girls and wife, that it is almost over for any life as we know it. Try to tell kids that we have nothing and will lose the house, cars and everything and basicly be out on the street soon. I'm a fighter, but this one may get the best of me. i just don't have a clue what to do.

Delilah

Hi,

I need to stress the fact that you should fight to get IVIG treatments. It is the ONLY treatment
that has been shown to help people who have gotten horribly ill after getting Parvovirus B19 and often even will totally resolve the symptoms. Most doctors are not aware of this and will try to brush you off.
I don't know what, if any, diagnosis you have gotten but even if it is RA, there is a research paper, done by some Japanese researchers who followed people from the onset of Parvovirus. They found three who developed very active RA. The virus was no longer detectable in their blood after a few months, but continued to show up in their bone marrow. They gave them IVIG after approx. 8 years and much suffering and surgeries. These people had a significant decrease in their pain and swelling, as well as decreasing the amount of damage still being done to their joints. The analyses they did on these people showed that the presence of the PVB19 virus caused an autoimmune, and immune response in their bodies. It was these immune compounds that did the damage.
Besides those papers there are many, many others that show people who had the virus and continued with many different symptoms and diseases. When these people got IVIG treatment (more than just one treatment) they either were completely cured or had a significant decrease in their symptoms.
The treatment is expensive. I live in Canada so here it would be covered by my provincial health care plan. However, you need to fight to get this. Get your doctor to check and see if you still have Parvovirus B19 IgM antibodies. Some people continue to have them even years after getting the virus (do not be confused by the Parvovirus IgG antibody test - these antibodies are the second response). If you still have the IgM it will be proof that your body is fighting against the virus and the virus is still in your body. Also, get the doctor to analyse for the presence of the virus in your blood. I can send you links to different research papers if you need them
Do NOT give up. Get the analyses and the treatments! It will save your health and life.
I am continuing to fight for my own and I will not let the doctors shove me to the wayside. My life is as important as anyone else's.

p.s. - even if the bloodwork for IgM and parvovirus b19 is negative that Does Not mean that you don't have the virus in your body.

LETTE_1973

I am new to this site and they do not have my diagnosis on here: TTP (low platelet count) I just happened upon your comment and I must tell you that I feel for you sooo much. I know that going from a self-employed bread winner to a major illness must be horrible. I am a SWF worked 60 hrs wkly for a small company for 9 yrs. I am needed at work & can't do it. My family has really been there for me, not financially, but taking me to the hospital each day for my treatments & calling me to keep my spirits up, etc. The owners of my company have actually been paying me while I've been off - 6wks now. (I have only taken 4 sick days in 9 yrs) But, what I am trying to say is: If any of your children are old enough to work, I'm sure they'd be glad to. And I'm sure your wife would be happy to help out. Financial worries will stress your body & you can't heal. So whatever you do, you must lower your stress level. What about a local church? Your family will understand - They only want you to be better.
My thoughts & prayers are with you & your family.
Paulette

jfajfa

Thank you so much Lette. Yes, it is pretty dismal around here. The kids are a big help around the house but can't work, not old enough to drive. My biggest problem, outside the disease and the lack of money to pay bills, is the fact that I have always been the strong pillar in my whole family. Now, I can't do much at all. I have always worked hard and HONEST in my business and always helped others in need, to the point that many times me and my family come second. Now I can't get any help at all.

On the other side of this......I am looking out my office door into the yard, barn and farm fields and see how beautiful it is and realize how lucky I am. Not to many people have done as much as I have in their lifetime. If I have 15 minutes to look over my life before I die and look at all the things that I've done that I would change, I think there will be a lot of time left. I feel so bad for my children, and the only thing they will inherent will be my integrity.

ljebeans

hello,
i just joined this website group because i did a google search for information on parvo virus and rheumatoid arthritis and it came up. i have been diagnosed with parvo virus induced rheumatoid arthritis and fibromyalgia since 1999. i have been suffering greatly with pain and fatigue and i am on prednisone, methotrexate, and orencia infusions. i was interested in finding out more about the ivig treatments. i remember hearing about them maybe 1-2 years ago and asked my doctor but he said its expensive, not covered by insurance, and not enough research about it. i couldnt believe reading about all these others who have the same diagnosis. i dont know of anyone else and know that it is rare. when reading these stories posted i felt like i was reading my own life story.

SickOfBeingSick

I am on social security disability and, a well-guarded secret is that business, transportation and medical expenses are DEDUCTED from your income in determining eligibility for social security disability payments.

I was self-employed for a period of time also, and you should be able to supply the Social Security Administration with copies of your income tax forms and your own personal accounting of your income (after business and medical expenses) broken out by month. This is what I did and it was accepted by the Social Security Administration. Even if you never paid any money into the Social Security system, you will still qualify for a minimal monthly payment.

Also, SSI, supplemental security income is a SEPARATE STATE-RUN PROGRAM and you have to specifically ask to apply for it, usually at the Social Security Administration office. The requirements are completely different from Social Security Disability and you may be able to get these payments almost immediately.

Food stamps and Medicaide are calculated the same way, income minus expenses; including business, transportation and medical expenses. There should also be a county or state-run program for assistance with medication and medical expenses, especially if you have no medical insurance.

After being on Social Security Disability for 12 months you will qualify for Medicare and will be able to enroll in a prescription drug coverage program. Another well-kept secret is that if you are very low income, you will qualify for programs to pay your Medicare premiums and co-payments and to lower the costs of your prescriptions to a minimal payment.

Help is out there but the only people that know how to get it are people who have been in the system for years. Check local support groups, by e-mail or phone if you are unable to attend in person, and find out about programs available in your area and learn how to "work the system".

In the US it is a real art. They seem to want to keep any assistance a very well-guarded secret and government agents will not volunteer or supply you with the information you need. They seem to regard anyone seeking assistance as a free-loading criminal. The last time I applied for food stamps the representative threatened to have me arrested for fraud because, in a 3-inch high stack of paper I had forgotten to include one $20 item. I later turned in a 4-inch high stack of supplemental documentation they wanted which I didn't have the money to copy and of course they lost it, and I couldn't reproduce it so I didn't get my food stamps.

Also, never trust anything you hear from a government representative. Most of the time what they tell you will be grossly inaccurate. The web sites are sketchy, anecdotal rather than factual and grossly disorganized and it is almost impossible, and very, very time-consuming to get the information you need there. Rely on networking only. Sad, but true.

You also might want to contact an insurance agent about a reverse mortgage if they are available in your state.

Good Luck,
Cathy

SickOfBeingSick

Hi,

I was just approved by my insurance company for IVIG treatments for a Primary Immune Deficiency. Yes, it is very expensive, but your doctor is wrong to just blow off your inquiry about this treatment.

I was initially denied by my insurance company and appealed. During the appeal process I Googled my insurance company name along with the search term "IVIG" and pulled up a copy of the insurance company's criteria for approving IVIG treatment. One of the criteria for which they WILL approve this treatment was Parvovirus B19.

I read about the illness and the description fit me so I had my doctor test me for it. I tested positive for a previous infection. I also have severe nerve pain but it's hard to know if it's from the immune deficiency (which can cause auto-immune problems), previous cases of meningitis, recurrent Epstein Barre or Parvovirus B19.

I was finally approved for IVIG Friday and I can't help but think that the positive test for Parvovirus B19 helped my case.

Find out if your insurance company covers IVIG for Parvovirus B19 and if they do, inform your doctor. If your doctor is still hesitant to get this treatment for you and you think it would help you, be your own advocate and contact another doctor! Interview them beforehand and find out if they would be receptive to helping you get IVIG treatment for Parvovirus B19 instead of wasting your time and their time making an appointment with them.

Good Luck and Good Health,
Cathy

jeanie379

Hi,
Your situation sounds so similar to what happened to my family when I first got sick. We went from making over $250,000 a year, and this was back in 1994, to $19,000 in less than one year. We too owned a small company that died because I became ill. Over the next 3 years, we lost everything - our stocks, retirement funds, etc,(close to $300,000 in liquid assets not counting the thousands upon thousands of debt that we're still paying off- we're down to the last $30,000). We lost everything except the house and our personal vehicles. We did not go bankrupt and we kept our integrity...promising to pay every single loan no matter how long it took.

Our oldest of two daughters is expecting our second grandchild now. She told me the other day that she remembers the "homemade" Christmas and what a wonderful christmas it was. That it, to her, was one of the best years of her childhood. I couldn't believe it. Before that, she had lived like a princess.....afterwards, well, she definately never got another outfit from Saks.

What I'm trying to convey is that I've been where you are...and I know how you feel....and it's the bottom....it only gets better. Your creditors will work with you.

I did receive disability and medicare....not right away. My husband started a landscape business as he had a horticulture degree and a lawn mower...and we had an old station wagon. It's a very successful business today...so much so that we're even out of the phone book because we can't handle any more business. Your wife knows some skill...and she can put that skill to work....whether for herself or someone else. She won't mind helping.....she'll do it because she loves you and your family. It will be hard at first....and there will be days you'll believe you're worth more to your family dead that alive. But I promise that on the "other side of the dark valley" there is new life...new hope....new beginnings....and you won't believe how wonderful that life can be.

Please hang on.....I know what a difficult position you're in....but I promise that in just a few years.....less than 2 really....you're going to be laughing and enjoying your children....and they will respect you and love you for you....not because of what you gave them but because of who you are....

Good luck....Jeanie

Wintersweet

Dear Jfajfa,

I am moved by your plight and yet again, disturbed at the cruelty and neglect our society has in store for the sick & disabled.

It sounds like you have some things going for you --education, love of your family, still a beautiful place, and an understanding of financial issues.

The stress itself can be overwhelming & affect your immune system, and it might seem that taking care of yourself with the basics could become a little thing overlooked in the great troubles, but the little things we might be able to do while waiting for treatment and resolution of financial issues might just tip the scales in our favor, so here is a little caring reminder about taking care of yourself as best as you can, especially sleep & diet which are known to be important to immune function. Here are the seemingly little things that I think might make a significant difference in readying your body to heal:

Are you getting enough good sleep, and if not, can you find a way to? Sleep is much more important to immune function than seems widely acknowledged.
Are you able to stretch or walk a bit or able to get someone to help guide you to work gently within your limits each day?
Are you eating more than 5 servings of real fruit/veggies each day?
Are you getting a good amount of protein? Check on what you should be getting & are you?
Are your carbs from whole grain sources?
Are you avoiding junk food?
Are you taking at least a multivitamin, and perhaps fish oil and other supplements?
Is there someone who can help you with advise on what might help you here?

There is an herb cat's claw, brand name Savantaro by Enzymatic therapy thats supposed to help regulate immune function- I can't speak for what it does, but I have taken it for periods of time when I feel my immune system is out of balance. After a higher start up dose for 10 days, it is about $12 a month for the supply, which I have felt was worth the possibility it might help.

I wish you the best of luck in getting through this to feeling better and a better situation.

Fibro_Angel

It was so refreshing to join this website and find others with Human Parvo. I was diagnosed last summer after never even hearing about it before. To me, when you heard the word Parvo, it meant your dog or cat was sick.

I guess I caught it from an infected mosquito; my outbreak then was mild but my latest outbreak was three of the worst weeks filled with pain and lack of sleep...I also have CFIDS, FMS and Chronic/Recurring Mono. At the time I had my last outbreak, I had been in the midst of a 56 week bout of Mono...I actually could not wait for the Mono to come back so I could sleep again!

My question to any and/or all of you, what do you take to help with your Parvo pain and lack f sleep? It got to a point for me, that the only gave even the slightest bit of relief was 10mg of Flexeril and 100-150 mg of Tramadol, four times a day...My normal medication regimen for the Mono, didn't help me with sleep either...I averaged 2-3 hours of sleep per night and this was while on 200, and later 300mg of Trazodone!

Thanks for making me feel less alone!

F_A

parvo06

im sorry to here what you are going through i was diagnesed with parvo 2 years ago
i take methetroxate once a week 10 pills and one pill of prednizone a day and i can lead a normal life with some vitamins added in there
that is about all i can tell you im now learning about this disease and it is scaring the crap out of me i thought it would go away with out these meds i would not walk or work at all
i hope you get to read this i still get my aches and pains but i can work
if you are or no any one in britishcolumbia canada id love to converes with them i alos have msn if any one wants it

Debin

I hear your story and wonder if you have felt alone at times because there are not many physicians skilled at treating this. I also wonder if you know of a doctor in the New Jersey or New York area willing to give the IVIG treatments? Debbie

artmom

I've been sick since January of this year. And just was finally diagnosed with the parvovirus. I have also been looking for someone to treat me. So far I keep getting , all your symptoms will go away and that there is no treatment. It looks like most of the people with this have been sick for a very long time. So maybe I will be lucky and the symptoms will go away. I just know that I haven't been getting any better and along with the fatigue, joint and muscle pain I have blurred vision, headaches and can't seem to think straight. I'm so tired of being on the couch. It took 5 different doctors before someone was able to diagnose me. I called a place in Charlotte, NC and asked if they do IVIG treatment for parvovirus and they said yes. I get there and they say there is no treatment unless I have anemia from it. Anyway I was disgusted and depressed. I can't even imagine how people feel who have been dealing with this long term. I'm just wanting to get better and get back to being a mom to my 3 kids. I see your post is from Jan. Have you had any luck finding any doc. to help?

mochalsl

I was just diagnosed with parvovirus. I haven't even had the courtesy of my docter telling me. The physicians assistant told me that's what I had and to call back in a month. The only thing I know is what I've been reading on line. I have had to practically beg for a doctor's consultation. It's frightening to read what I have to look forward to. I'm almost 50 but overnight with this illness, I've aged 40 years. I hope for me, and all of you, that we'll wake up to find it has disappeared. It's hard to believe that normal life gets snatched away so quickly. I would welcome any advice from those of you who have been suffering.

Delilah

Cathy,

Regarding your nerve pain - I took have severe nerve pain:
facial, legs, arms, shoulders, back, feet, etc.
Basically almost every major peripheral nerve.

I did have the Trigeminal Neuralgia before getting sick from Parvovirus B19 but no other nerve pain. I too don't know if the nerve pain is caused by autoimmune or what but it is 100% clear in my case that the nerve pain was started by getting Parvovirus B19. It started within a couple of weeks of getting the virus in my body. Possible for you also but you have no proof when you got the virus relative to when your nerve pain started.

Delilah

Fight for the IVIG. It took me 5 years but finally I am now going to get it regularly every month at a minimum two days back to back. I have had approx. 4 treatments at different doses, scattered in time. The first one I got was 1 1/2 years after I got the virus. It helped immensely but it was such a small dose.

Do not use steroids. The virus is activating your immune system so you may get some relief from the steroids but they will also allow the virus to replicate more and ultimately you will get worse. That is definitely the case with me. Tried it several times and each time I got severly ill again.

Check and see if they will test for the virus in your blood. Not the antibodies but the virus itself - by PCR.

Good luck and keep persisting. Sooner or later someone will listen and you will get help.
Also, I recently started going to a Naturopath and I am getting some help from it. I have a better appetite and less energy.
On a scale of 0-10 with 0 being dead, I have several times been as low as 1.

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