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393986 tn?1303825975

They found Parvovirus B19 in my marrow....

Hi Everyone, I wrote this as a journal entry but I feel that my appt the other day was useful and informative.  They found parvovirus in my marrow, I know it is a relatively common virus what is not common is how it can trigger an autoimmune response.  I was told that it was chronic parvo.  So I did a bunch of research on this, this weekend.  In some people it comes and goes but people with weakened immunity can get complications from it.  It can cause a lupus like syndrome, arthritis, uveitis and other things.  One thing that really stands out is the neuro complications like co-morbid bipolar, all my brothers have bipolar.  Does this increase my chances of getting bipolar?  

What bothers me the most is why didn't they test me sooner for this?  I wouldn't know if I was sicker because I have been sick for over a year now.  How would I tell the difference.  Why did it take a bone marrow test for them to find it?  I guess I am angry and happy about it.  Could this just be all that is wrong with me?  I guess I wont know until I see the infectious disease Dr's, I already seen them months ago.

Any thoughts on this anyone?

Love to All,

Ada
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Avatar universal
Hi All. I got diagnosed with Parvo 6 weeks ago. First I found enlarged lymph nodes and then all the described above symptoms came ( I had swallen fingers, legs, could not go up the stiars, my lower back hurted a lot, my legs were swallen, I had pain in my legs). The arthritis like symptoms lasted for over 1 week, then I was just very tired, had low grade fevers and became very anxious, stopped sleeping for about 1 week. also I noticed in first 2 weeeks that when I wanted to say something it did not come up the way I wanted to say, it took me longer to process my thoughts, then it went away. I was out of work for 3 weeks. Week # 5 into disease I developed rash on my face and my arms.
No it is week # 7. My lymph nodes are still present, altought they are not getting bigger. The ultrusound of the neck showed that the biggest node was measureing 1.2 cm in lenghts, so they consider it normal. I do feel heat in my pulms sometimes and in my feet, then it goes away. Hope it will resolve soon.
Does anyone had lymph node involvment. I have 2 on the right side of my neck, 1 on the left behind my ear and 2 above clovicles, they all feel small.
My wholl family got sick, altough with less severe symptoms. We think my daughter brought it from he cmap, she is 6 years old. I am 39 years old.
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Avatar universal
my son was dignosed with parvo b19 and he is 13mons old we went to the local er for over a week with a constint fever of 103+ and they didnt do nothing for him so on last sunday i took him to childrens hosp and they dignosed him with this. his was acting like lakimiea. it attakced his bone marrow and his white blood count when we got to childrens was 60. i am trying to find out more about this. they told me he will always have this and most likely have outbreaks from it. but didnt tell me anything else i think they tought they would scare me. but he is now having regular cbc test till it goes up. if anyone can help me please i want to be very educated on this so i can be there for my son. we are home now his cbc count yesterday was 700. they said he is gettig better. he wont eat hardly and drinks only gaderaid. we have him on pedisure to help with the not eating. they also told us to not give him baths where he is setting in standing water for to long. and to bath him twice a day. and that he cant be around carpet.. i am trying to learn more like i said. and want to learn of what is ahead of us. thanks.
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848718 tn?1257138801
There's an email list over on Yahoo Groups for folks suffering from the after effects of Parvo. It's controversial whether there's a "chronic parvo" illness (similar to the controversy over "chronic Lyme"), but there's no question that Parvo, or any virus, can trigger a wide variety of autoimmune responses.

I tested positive for parvo about five months after I got sick suddenly. We believe it's out of my system (although there's some research that shows that Parvo, like herpes and the chicken pox virus -- the name is escaping me, can go dormant in your system and then pop up again and flare. Some doctors test bone marrow to see if the Parvo is still in it. I haven't had that done, personally.

Are you seeing a rheumatolgoist? That's probably your best bet if you've developed an autoimmune disease. But my rheumy says there are lots of autoimmune diseases that haven't been clearly identified yet, so there's no guarantee of a Dx. And I've been lingering in limboland since June 2007. :-(

Sorry the Mayo Clinic couldn't help you. My extended family keeps pressuring me to go there, but I'm not convinced they'll be able to diagnose me with anything either. I'd LOVE to hear about your experience there, if you wouldn't mind talking about it. What it's like, how you set it up, whether you felt like they took you seriously, etc. Also, did your insurance cover it? A friend told me that when she looked into going she was told she'd have to put down a huge cash deposit even though her insurance would cover her going there. She's going to Johns Hopkins instead now.
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Avatar universal
Viral infections can occur when the immune system becomes
compromised. This can happen after prolonged stress, or when
the adrenals become run down. Find a good naturopathic doctor
or herbalist to help restore the adrenals and the immune system.
Herbal antivirals will also help. A good homeopathic doctor or
naturopathic doctor who works with homeopathy will also be able to help.
Good luck---Dr. C
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198419 tn?1360242356
Hi there,

I'm so sorry you had to end the work you enjoyed at the NPS. I hope we can help steer you in the right direction. I left you a note about copying what you posted here to a new discussion - that way, if anyone has any thoughts it will be easier to see you right off the bat on a new discussion.

Thanks for joining us.
-Shell
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Avatar universal
Hello,

I am emailing because I'm trying to find answers for myself.

I am a 26 year old adult female who had a test positive for Parvovirus B19 last May.  I seem to have contracted it on the big Island of Hawaii where I was a volunteer with the National Park System.  I had to end my term with the parks because I became ill there.  I began to bruise easily on my skin and muscles and then got hiccups, had visual changes - floaters, static, and bright sparks, intense fatigue, swollen saliva glands and lymph nodes.  Then the most apparent symptom, myoclonic jerks and muscle fasciculations, started at which point I had to leave to go back to mainland America.

After this, other symptoms emerged, a dry persistent cough, very dry eyes, folliculitis on the skin on my arms, upper torso, and neck which actually may be small vasculitis, low B12 level, a lymph node behind my ear that has been swollen for about 10 months, random pain in arms/hands/legs/abdomen, red/itchy palms, bad acne, muscle vibrations, waking up with numbness or tingling in the hands/arms, poor digestion, the diagnosis of an egg allergy and a few other allergies, dizziness, uncomfortable feelings in my chest and more.

I have done everything I can to try to find someone who can tell me what is wrong with me or if there is any cure for me.  My symptoms have generally become less severe since my illness began, but it's been a year since I got sick and I'm still not healthy enough to live a normal live, hold a job, etc.  I have seen many family doctors, specialists, and I have even spent a week at the Mayo Clinic.  Everyone I have seen has told me it was either stress or some unknown virus (I guess because they thought Parvo could not possibly give me the symptoms I had).  My life is in ruins compared to how it used be, I am constantly putting up with random symptoms and I never know how I'm going to be from one day to the next.

I recently found out that adult Parvovirus could present differently in adults than in children and not many doctors seem to be aware of it.  I also found out that it could trigger an autoimmune disease.  For the longest time I had no idea what was wrong with me and all the doctors discounted Parvovirus for many months even thought is was the first and only thing I tested positive for right after coming home, but now I have a hunch that it may all go back to Parvo.

I am trying to find a specialist in America in this as no one has been able to help me and I really need help.  The anxiety I am feeling over not being able to get any help and wondering if my body is deteriorating as I deal with this illness is so much to put up with.  If you have any information, please email me back and let me know.  Thank you.
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Avatar universal
Hey guys -
...me, Lauri - No MS (but I like this forum so much!!).  I also tested positive for Parvovirus 19 and have SLE.....interesting...They also for a time thought I had reactive arthritis (before my blood work became really wonky and Dx was changed to lupus).  Just FYI
Love Lauri
Helpful - 0
429700 tn?1308007823
It's that old chicken or the egg first thing.  Did you notice the rash before getting sick or did you get the rash after getting sick?  

Maybe you're immune symptom was compromised as the result of the medicines you were taken for the pain/treatment of your hip or perhaps this was the trigger for your illness.  


Helpful - 0
393986 tn?1303825975
They said it was active because of the titers?  When I got the lab report all it said was positive for parvo B19.  I know when the Dr is looking it up on the computer they have to click on test to get more details of the test.  I also have positive titers for EBV but that one said it was inactive.  Who knows?  

Love Ya,

Ada
Helpful - 0
393986 tn?1303825975
I forgot to tell you where to find that article, its from Suite101.  If someone sees my brain, can you please, please tell it to come home????!!!!! hehehe

Ada w/her tail between her legs......
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Avatar universal
This is very interesting....
I really shouldn't be here....I've got so much going on today, but I can't keep away from you guys!!

This is quite interesting! When my daughter, (who is will be 14 in December and is in the 8th) was in kindergarten, they had a horrible case of Fifth's disease and almost the entire class got it. Her class was quite large that year and so her teacher had a lot of mom's helping out in the classroom. Myself and a couple of other mom's also got Fifth's disease as well. So, how long can it hang out in you? Can it come out many years later and start messin' with ya?

I'm just curious b/c this was years ago and in 06 I had 2 incidents of painful, overnite hand swelling and another incident with my shoulder that was very similar (painful,  swollen, unable to move my arm).  Never got any answers for those, except some mild tendonitis in the shoulder and never had any problems since.  Just wondering if this was some sort of migratory arthritis caused by the Fifth's disease. Seems odd that it could hang around for so long though.........

You won't find me asking my doctor this question though as I can't get a spine MRI even though he's told me I have an abnormality in my spinal pathway.  He'd think I was loco.

Bye all.....busy afternoon ahead.
Hugs to all!
Julie
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293157 tn?1285873439
wow...that's alot of info....you know when I had a Bone Marrow test...it showed Granulomas?  They tested me for TB... Wegeners... Sarcoidosis... and still testing me for Neurosarcoid..??  I'm not sure what the result from Bone Marrow tells the Dr..

I had a Bone Marrow test because my blood tests showed Monoclonal bands...??  but I don't have cancer they say..which is really good..

let us know how things go...very interesting...

take care
andi
Helpful - 0
335728 tn?1331414412
Do you have an appointment with these ID guys yet?  I have to agree with Shelley in that there is a lot to learn about this one and it is taking me a while to wrap my feeble brain around it.  I am working on it but my brain is having trouble absorbing it all but don't give up on me completely...I am still trying to figure this all out.

Love ya,

Rena
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393986 tn?1303825975
hehehe!!!  Have a cup for me, I'm at my daily limit of a potful already and still seeing the fuzzy's in me eyeballs!!!!  They didn't do the genetic mapping like they said they were with the marrow but seems they did a full infectious disease panel.  I cannot wait to hear what the I.D. drs have to say......

Love Ya,

Ada
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198419 tn?1360242356
WOW! Going to need 2 cups of joe to get through this!

Ada Sweety, I see why it doesn't sit well w/you, and wish I could articulate my thoughts, but there is so much to learn here from this 1st. Seems they left no stone unturned w/your marrow, and if I'm reading this right, they could of found this in your serum.

Thinking of you,
Shelly

  
Helpful - 0
393986 tn?1303825975
See I have to wonder if this maybe just triggered my illness and maybe it is not active now at all.  What bothers me so much is I thought the infectious disease Dr's had already done this test, but they hadn't.  Do you think that my rashes that I have had is the rash from parvo?  Something still isn't right with this as a dx.  I would believe it more if they said "Because you had parvovirus, we believe that it is the trigger for your arthritic condition"  (sigh)  Sometimes this stuff just doesn't make any sense to me at all.
*Here is an article I found most interesting and informative:

Human Parvovirus B19 has been linked to a number of different autoimmune diseases, including vasculitis and connective tissue disorders.

Human Parvovirus B19, a species of parvovirus that infects humans, is associated with the development of several different autoimmune diseases including dematomyositis, mixed connective tissue diseases, a lupus-like illness, a serologically negative (negative RA factor test) form of arthritis, granuloma annulare, autoimmune thyroid disease, autoimmune schizophrenia, and various forms of vasculitis, including Henoch Schonlein purpura, Kawasaki disease, Wegener’s granulomatosis, and polyarteritis nodosa. The development of autoimmune conditions following Human Parvovirus B19 occurs in people of all ages and occurs more frequently in females. Autoimmune disease development is also known to occur in adults exposed to children with fifth disease.

Human Parvovirus B19 Disease

Human Parvovirus B19 was first identified in 1975. Since its identification, this viral agent has been recognized as the cause of “fifth disease” in children and adults. Infection with Human Parvovirus B19 is characterized by a petechial (causing small bruise-like eruptions) rash similar to the skin lesions seen in Sweet’s syndrome or erythema multiforme. This rash occurs in a “glove and stocking” distribution in the pattern of a lace-like or reticular rash covering the trunk; another finding is a characteristic reddening of the cheeks referred to as a “slapped cheek” sign. Other symptoms of infection include a systemic lupus-like syndrome of arthritis, edema, mucosal ulcers of the mouth and/or genital tract, uveitis, fever, joint pain, muscle weakness, and purpura or bruising of the lower extremities.

Human Parvovirus B19 infection is diagnosed by serological tests for Human Parvovirus B19 antibodies. In addition, the lesions in Human Parvovirus B19 infection show evidence of the parvovirus B19 genome and can be used to diagnose infection. Skin biopsies of infection patients also show an infiltration of white blood cells, fragmented collagen, and vascular changes. Besides the links to autoimmune disease, Human Parvovirus 19 infection is thought to be responsible for fetal loss in pregnancy and for aplastic anemia in patients with compromised immune systems, including patients on immunosuppressant medications.

In chronic infection, Human Parvovirus B19 can infect the brain. Because of its ability to induce autoimmunity, this virus is suspected of triggering co-morbid bipolar and autoimmune thyroid disorders in females and schizophrenia and autoimmune thyroid disorders in males.

The Autoimmune Connection

The skin manifestations in Parvovirus B19 suggest a type of tissue injury that is mediated by a delayed-type hypersensitivity in which antibodies to Parvovirus B19 go on to target persistent Parvovirus antigens in the skin tissue, causing immune complex formation. The immune response in Parvovirus infection also causes the induction of tumor necrosis factor alpha (TNF-α), a cytokine involved in the development of ANCA positive vasculitis syndromes. Researchers at Ohio State University have also found a series of patients with interstitital lung disease, including pulmonary fibrosis, autoimmunedisease.suite101.com/article.cfm/pulmonary_fibrosis with evidence of chronic Parvovirus B19 infection based on the presence of parvovirus antibodies and the isolation of Parvovirus B19 DNA in lung tissue samples.

One major theory of autoimmune disease development involves the presence of superantigens, which include various protein particles that are capable of reacting with multiple cell receptors. Through a process of molecular mimicry, viral superantigens can elicit an autoimmune response in which the immune system targets specific bodily proteins rather than the infectious agent.

Other infectious agents known to cause a “reactive” form of arthritis and rash because of their ability to act as superantigens include cytomegalovirus, streptococcus, mycoplasma, Klebsiella, and Borrelia burgdorferi.

Treatment

Treatment for connective tissue diseases and other autoimmune conditions suspected of being triggered by chronic Human Parvovirus B19 infection include immunosuppressive and immunomodulatory therapy with agents including prednisone, cyclophosphamide, hydroxychloroquine, non-steroidal anti-inflammatory drugs and etanercept. However, none of these therapies have caused a complete resolution of symptoms.

Love You All,

Ada
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147426 tn?1317265632
"cause" not "sauce," lol.
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147426 tn?1317265632
If I can add a little about Parvo B19. Yes, this is the infection known in kids as Fifth Disease because it was the "fifth red, rashy disease" named in children behind measles (Rubeolla), German Measles (Rubella), Roseola, and Scarlet Fever (which is actually just the rash of Strep).  By age two 90% of all children have had the Parvo-B19 infection.  By adulthood it is greater than 95%.  The antibodies are usually present lifelong.  

Parvo is a member of the Herpes Family and lives on in the nervous system just like EBV, Herpes Simplex, and Herpes Zoster (chickenpox & shingles).  It is also known in kids to cause severe suppression of the bone marrow and low blood counts., especially whitel counts.

Parvo B19 can cause a reactive arthritis in older girls and in women.  I had Parvo B19 in 1999, about 8 months before my vertigo hit and slammed me down.  This arthritis usually resolves, but can be permanent as it was in my right wrist and right ankle.  This arthritis, and any "reactive" arthritis is immune-mediated, so they know that the virus can sauce serious problems with the immune system.  

Parvo B19 has not been implicated in being one of the triggers for MS, but it has been seriously implicated in causing Rheumatoid Arthritis, SLE, Vasculitis, Scleroderma, Antiphospholipid Syndrome and Systemic Sclerosis.  This connection is not completely proven.

Here is a quote from an abstract studying it:

"Human parvovirus B19 infection is responsible for a wide range of human diseases ranging from mild erythema infectiosum in immunocompetent children to fetal loss in primary infected pregnant women and aplastic anemia or lethal cytopenias in adult immunocompromised patients. Since persistent viral infection is responsible for an autoimmune response and clinical symptoms can mimic autoimmune inflammatory disorders, parvovirus B19 is the object of intense efforts to clarify whether it is also able to trigger autoimmune diseases. Indeed the virus has been implicated as the causative or the precipitating agent of several autoimmune disorders including rheumatoid arthritis, systemic lupus, antiphospholipid syndrome, systemic sclerosis and vasculitides."

http://www.ncbi.nlm.nih.gov/pubmed/18700174

The relationship to Bipolar Disorder is very interesting.  Being that it is almost 100% likely that all of you and your sibs were infected early in childhood with the virus, I would think that if it were going to show up in you it would have already.

I also would be interested in knowing how they know that you have a chonic infection.  I'll keep this in mind as I do my reading.  I will also look to see if Parvo B19 is associated with Still's Disease.

Fifth Disease is also known as Slapped Cheek Disease and Erythema Infectiosum.  It starts as a very mild, or even unnoticeable infection that is not dangerous with the exception of in the first trimester of pregnancy when it can cause miscarriage.  About three weeks later, long after the acute infection is gone, the kids break out in a rash that is lacy on the extremeties and moves out toward the limbs.  But, it's telltale sign is that the cheeks turn bright (I do mean BRIGHT) red.  As if they had been slapped.  It occurs every year in large outbreaks in winter and spring (hmmm, Vit D?).  The diagnosis is obvious just looking at them.  This rash is NOT contagious so there is NO reason to send anyone home from school.

Wow!!!  I found a use here for my pediatric knowledge.  This is so cool!  I hope you didn't mind my little lesson.  It was fun to recall all of it!

Ada, why didn't they find it earlier?  In my reading it is little-known and not suspected to be the direct cause of any of the autoimmune stuff, just a possible trigger.  We don't know enough yet to be looking for it in large groups of people.  Please share with me ANY info you get and ask for articles if you would.  (I know that's selfish, Sorry.  You have other things to talk to them about)

Quix
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335728 tn?1331414412
I really, really hope with all my heart that this is all that is wrong and that they have found it before it can do any further damage to your life!  You have been through a HE** on earth that no one should have to go through.  When I think of what a close call it was when you were taken off the steroids without a taper and you could have lost your life...
When they "thought" you had cancer...not all of them, just a few of them...but none of them really knew what they were looking for.

I feel so blessed that I have had the opportunity to get to know you better through all of this my dear friend Spaz (ya know, Ada just doesn't fit for me for some reason! tee hee Spaz just fits better! hehe)  I don't know what this new diagnosis means for your and your health outlook but I really hope that they can help you to feel better and give you the energy to be able to pursue that job you were telling me about...I know it means a lot to you and I would back you up all the way although you know I would rather you look after lost puppies and kittens tee hee!

I think that you are going to still take this one step at a time and although your brothers are bi-polar I don't believe that you will suddenly become bi-polar because of this.  You are a woman that has been through a lot in her life and has managed to hold her family together sometimes through all of your trials and tribulations regardless of how difficult some of them made that to do.  Please know that regardless of what these Infectious Disease doctors decide, you are strong and you are resilient and you have been close to death's door twice and managed to evade it so I think you are going to lick this one with one good punch!  And whether you like it or not...I am going to be there to wipe the sweat off your harrowed brow and remind you of what you have to fight for ok?

I love you Spaz and I am so proud that you have come through this with a lilt in your step, a song in your heart and even though you are now a member of the board at the library...I STILL THINK YOU ARE SO COOOOOLLLL!!!!   he he

Love you,

Rena
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429700 tn?1308007823
Is this the same virus as the Fifth's Disease?   I tested positive for this when I was I was seeking a diagnosis a long time ago.  The doctor said it was an old infection.  I remember having a rash of some sort when I was really young.  Would this show up in a person's bone marrow if you had an infection a long time ago?

Is this something you were exposed to long time ago or can they tell if it's recent?????
If it's long time ago, it probably is unlikely that it's causing all your symptoms (this was according to my rheumatologists a million years ago).

Deb
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