I live in NC and have being having flu-like symptoms, fever, joint pain and swelling off and on for a year. I was diagnosed with Parvo in April and underwent 5 IVIG treatments. I initially noted several days of improvement short lived and sudden recurrence of symptoms just like with the first episode. I was told I would notice improvements weekly for up to 4 months, but nothing was mentioned about setbacks. The doctor that treated me no longer treats office patients, just hospital patients. The doctor in the office doesn't believe in IVIG for treatment or that Parvo can be a chronic disease. I am sort of in a bind. Just wondering if anyone can recommend a knowledgable doctor in North Carolina as I do not know what I am going to do? Any help would be greatly appreciated.
tday
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Parvo B19
- By tday
- Posted June 15, 2009 at 9:09 pm · 3 replies
- In Finding a doctor
- Shared with the public
Explore topics in this discussion:
Pyelonephritis Goiter Fatty liver Diabetes Fever Anemia Pain Cirrhosis Lupus Sickle cell anemia
3 replies
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- Newest first
- By suffering2long
- Posted August 22, 2009 at 3:36 pm
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Hi tday,
I too have been suffering with this condition for years now. Not exactly WHEN it even started because I have had so many instances in my past in which my kidneys were attacked but the doctor then just called it pyelonephritis (chronic). Another doctor seemingly made a mistake and diagnosed me with Lupus many years ago but I can't remember his name or how to get back in contact with him. Another one diagnosed me with "sickle cell anemia" which was odd because I am not black at all and it is usually found in only the african american race. Perhaps I have an ancestor from this race as I am a member of the "melting pot" race. All I know for sure is that in 2004 I was exposed to mononucleosis by my husband who is a silent carrier of it... and I almost died from it. This "mono" got in my liver and I wound up on a liver list. My hubby went ahead and purchased two cemetery plots based on what the doctor told us.. that I wouldn't pull thru this one. Surprisingly my liver fought to the end and started to regrow new cells and I became completely symptom free of a fatty liver, severe cirrhosis of the liver and death. (I am type 1 diabetic AND have thyroid disease-goiter). Here I am again .. sick with the parvo b19 virus and waiting to see which organ it is going to completely attack. What I was told is that it is treated with prednasone (which I am allergic to, and azathiaprine which incidentally is metabolized through the liver and kills it. I saw online about the JVIG treatments which is why I am writing YOU. As well I heard this disease can also cause heart trouble becauase it can attack the heart. Recently my grandchildren from Italy came to visit and they were very sick about 2 weeks from visiting. So I am almost sure this is where I got it from this time! I hadn't seen them in 5 years!
I am using Dr. Hointink in Rock Hill SC and he is doing a series of tests but so far he has mentioned the only thing that is most effective is the prednasone. But I can't take it! I am NOT glad that others suffer the same as I do but glad to see that it is NOT all in my head like others think! This is NOT a mild condition and should be regarded with extreme care! Find a doctor to listen to you! So far Dr. Hoitink is being adamant about helping me rule out exactly where he thinks it is raging right now but is taking so long it seems. I am miserable and so tired. I can only manage a couple of hours a day before I get so tired!
- By JanCO
- Posted August 23, 2009 at 11:59 am
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I'm in an online Parvo support group called The Miranda Mission on Yahoo and most of us see a doctor in Denver by the name of Isaac Melamed. He's an immunologist and does use IVIG to treat Parvo.
I contracted it about 1 1/2 years ago from a blood transfusion and was very ill for months. The joint pain from elbows down and knees down was so bad I could hardly sleep. I finally got relief from taking a bioactive whey powder which contains immune globulins. The joint pain went away within a couple of days.
I still fight it off and on as my immune system fluctuates, but it's nothing like I went through the first year. My hematologist knows it can be chronic but most doctors don't. It can cause anemia if it gets into the bone marrow because it suppresses the production of red blood cells.
It's interesting that one of the things most of us have in common is what we call "nose sores" and that seems to be an indicator of how well we're fighting the virus.
Sometimes the IgM antibodies and PCR testing will be normal, then it will flare up again so we all know it can last for years. I hope you can find a doctor to help you!
Jan
- By suffering2long
- Posted August 23, 2009 at 8:13 pm
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Jan,
Thanks so much for sharing this with the group here. Although I have had this condition seemingly all of my life, the pieces are just now fitting together. I have had diabetes 45 years and Thyroid condition for 40 years. So many other health related issues that are now beginning to make sense to me but then I blamed it all on my mysterious type 1 diabetes. Little did I know nor did my parents understand the true scope of things. I am a little fearful of getting this blood transplant not knowing all that I might be putting into my system but i will try the powder. I have nothing to lose at this point. I am in so much pain every single night and now I know why. As well I have suffered most of my life from "nose sores". Thought it was funny that you would mention that... everything seems to be connecting here little by little.
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