Comments on: Parvovirus B-19 and Rheumatoid Arthritis: Who is the real fraud? http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/ Bringing information & encouragement to fight RA Fri, 30 Jul 2010 14:45:38 +0000 hourly 1 http://wordpress.org/?v=3.0 By: Kelly Young http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/comment-page-1/#comment-15740 Kelly Young Tue, 25 May 2010 23:46:31 +0000 http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis-who-is-the-real-fraud/#comment-15740 KP: I did not think it was unwarranted - sometime the wait is months long. I always recommend calling around to see whether one has a wait/cancellation list. I have heard that parvo can elevate your Rf, but I don't know whether anything can elevate the CCP antibodies besides real RA. They are supposed to be very specific to RA. There is no guarantee, but CCP is a strong indication. It is possible that the parvo antibodies are there from a previous bout with it? Did anyone in your family have parvo? Maybe you had a mild case & did not realize it? KP: I did not think it was unwarranted – sometime the wait is months long. I always recommend calling around to see whether one has a wait/cancellation list. I have heard that parvo can elevate your Rf, but I don’t know whether anything can elevate the CCP antibodies besides real RA. They are supposed to be very specific to RA. There is no guarantee, but CCP is a strong indication. It is possible that the parvo antibodies are there from a previous bout with it? Did anyone in your family have parvo? Maybe you had a mild case & did not realize it?

]]> By: KP http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/comment-page-1/#comment-15730 KP Tue, 25 May 2010 22:56:16 +0000 http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis-who-is-the-real-fraud/#comment-15730 Thanks for replying! I do have a copy of the report in front of me...not sure what to make of it though!! Parvovirus IgG - 6.5 (High) Parvovirus IgG - 0 CCP - 70 (High) RA Latex Turbid - 28.2(High) CRP - 1.6(Normal) Sed Rate - 1.6(Normal) ANA negative I know the comment about getting an appointment with RD's was unwarranted...so apologies for that. I am just too overwhelmed with this thing right now Thanks for replying!
I do have a copy of the report in front of me…not sure what to make of it though!!
Parvovirus IgG – 6.5 (High)
Parvovirus IgG – 0
CCP – 70 (High)
RA Latex Turbid – 28.2(High)
CRP – 1.6(Normal)
Sed Rate – 1.6(Normal)
ANA negative

I know the comment about getting an appointment with RD’s was unwarranted…so apologies for that.
I am just too overwhelmed with this thing right now

]]> By: Kelly Young http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/comment-page-1/#comment-15721 Kelly Young Tue, 25 May 2010 21:39:33 +0000 http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis-who-is-the-real-fraud/#comment-15721 oh yeah, it's hard to get an appt because we don't have enough rheum docs. They are not paid as much as other specialists from what I hear. Plus it's a hard job. oh yeah, it’s hard to get an appt because we don’t have enough rheum docs. They are not paid as much as other specialists from what I hear. Plus it’s a hard job.

]]> By: Kelly Young http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/comment-page-1/#comment-15720 Kelly Young Tue, 25 May 2010 21:38:19 +0000 http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis-who-is-the-real-fraud/#comment-15720 Hi KP, No, usually, it turns out to be one or the other - not 2 at the same time. Parvo is usually over in a couple of weeks or less. How long have you had symptoms? Did you have the Rf - Rheumatoid factor tested? Or the ant-CCP? Can you get a copy of your labs so you can look at them? If it's a new onset of RA, then it should be treated ASAP in order to try to get a remission. Sooner the better. Did you read the blogs about RA -tests? (Have a look in the Tagslist Dropdown at the top of this page. Then click on the tests link to see more articles.) I'd like to hear how it goes. Good luck & I hope it goes away!!! Hi KP,
No, usually, it turns out to be one or the other – not 2 at the same time. Parvo is usually over in a couple of weeks or less. How long have you had symptoms?
Did you have the Rf – Rheumatoid factor tested? Or the ant-CCP? Can you get a copy of your labs so you can look at them?
If it’s a new onset of RA, then it should be treated ASAP in order to try to get a remission. Sooner the better. Did you read the blogs about RA -tests? (Have a look in the Tagslist Dropdown at the top of this page. Then click on the tests link to see more articles.) I’d like to hear how it goes. Good luck & I hope it goes away!!!

]]> By: KP http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/comment-page-1/#comment-15713 KP Tue, 25 May 2010 21:00:08 +0000 http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis-who-is-the-real-fraud/#comment-15713 Hi Kelly - I have been reading your blog for a while now, but posting for the first time. I just got my bloodwork back. The parvovirus levels seem high, the nurse said the doc thinks I have a new onset of RA. Do you know of cases where both parvo and RA are present at the same time? This is like a double blw for me...very scared, nervous..dont know what to do. I dont see my RD until june 10th...why is it so hard to get an appt with docs here in the US? Hi Kelly – I have been reading your blog for a while now, but posting for the first time. I just got my bloodwork back. The parvovirus levels seem high, the nurse said the doc thinks I have a new onset of RA. Do you know of cases where both parvo and RA are present at the same time? This is like a double blw for me…very scared, nervous..dont know what to do. I dont see my RD until june 10th…why is it so hard to get an appt with docs here in the US?

]]> By: Kelly Young http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/comment-page-1/#comment-12592 Kelly Young Sat, 01 May 2010 03:46:13 +0000 http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis-who-is-the-real-fraud/#comment-12592 Al, I hope you find answers. That does sound confusing. Hopefully, a good rheumatology specialist can help sort it out. Sometimes, a second or third opinion is needed. Good luck to you. Al, I hope you find answers. That does sound confusing. Hopefully, a good rheumatology specialist can help sort it out. Sometimes, a second or third opinion is needed. Good luck to you.

]]> By: Al http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/comment-page-1/#comment-12452 Al Fri, 30 Apr 2010 01:49:59 +0000 http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis-who-is-the-real-fraud/#comment-12452 Hello, I am posting because I'm trying to find answers for myself and I can relate to this all. 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, random myoclonic jerks and muscle fasciculations, (About 20 a min to start, now a year later, its more like 5 a day on a good day) 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. Or at least a prognosis so I can get an idea of what my life is going to end up being like. 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 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. Hello,

I am posting because I’m trying to find answers for myself and I can relate to this all.

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, random myoclonic jerks and muscle fasciculations, (About 20 a min to start, now a year later, its more like 5 a day on a good day) 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. Or at least a prognosis so I can get an idea of what my life is going to end up being like. 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 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.

]]> By: Alice http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/comment-page-1/#comment-11138 Alice Mon, 19 Apr 2010 01:48:06 +0000 http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis-who-is-the-real-fraud/#comment-11138 This is very interesting considering I had a rash that covered my body and my joints were achy I ran low fever lasted about a week. I just thought I had the flu and the rash was from a diff. detergent or body soap or such. I never went to the doctor for this. Two months later I went to the docter b/c my joints were still swollen and VERY painful had fatigue something fierce. The doc at the clinic was about 100 yrs. old, wearing a very bad rug :rotfl: , and said right away that I probably have OA so he did blood tests. When I went back the next week for results another doc said I have RA and OA and set me an appointment with rheumy. I never have mentioned the rash to any doc. Do you think I should? Could it be important enough to know about? ?:-) This is very interesting considering I had a rash that covered my body and my joints were achy I ran low fever lasted about a week. I just thought I had the flu and the rash was from a diff. detergent or body soap or such. I never went to the doctor for this. Two months later I went to the docter b/c my joints were still swollen and VERY painful had fatigue something fierce. The doc at the clinic was about 100 yrs. old, wearing a very bad rug ROTFL , and said right away that I probably have OA so he did blood tests. When I went back the next week for results another doc said I have RA and OA and set me an appointment with rheumy. I never have mentioned the rash to any doc. Do you think I should? Could it be important enough to know about? Question

]]> By: Kelly Young http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/comment-page-1/#comment-11011 Kelly Young Sat, 17 Apr 2010 19:17:20 +0000 http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis-who-is-the-real-fraud/#comment-11011 Hi Barb, That is a lot of "coincidences" & I hope you can get to the bottom of it soon. If you have any doubts about this dr's conclusion, maybe you should consider a 2nd opinion. It might help you to read the Do I have RA? page on the top menu. There are some links to some posts about the blood tests. What I recommend is that you get copies of the test results too & ask him to explain them to you a bit. Also,it's good for you to keep for your records & so you can have a more meaningful conversation. Let me know how it turns out. Hi Barb,
That is a lot of “coincidences” & I hope you can get to the bottom of it soon. If you have any doubts about this dr’s conclusion, maybe you should consider a 2nd opinion.

It might help you to read the Do I have RA? page on the top menu. There are some links to some posts about the blood tests. What I recommend is that you get copies of the test results too & ask him to explain them to you a bit. Also,it’s good for you to keep for your records & so you can have a more meaningful conversation. Let me know how it turns out.

]]> By: Kelly Young http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis/comment-page-1/#comment-11009 Kelly Young Sat, 17 Apr 2010 19:07:48 +0000 http://rawarrior.com/parvovirus-b19-and-rheumatoid-arthritis-who-is-the-real-fraud/#comment-11009 Jean, they can do a blood test to determine for certain if you've had Fifth disease I think by testing for antibody for it. The rash is usually pretty distinctive - in my family we all looked like "lace" as it says in the books. I do not think this mystery (whether there's a connection?) is easily solved though since I keep meeting people like you whose diagnosis is muddy. What did they do for you in the hospital? Jean, they can do a blood test to determine for certain if you’ve had Fifth disease I think by testing for antibody for it. The rash is usually pretty distinctive – in my family we all looked like “lace” as it says in the books. I do not think this mystery (whether there’s a connection?) is easily solved though since I keep meeting people like you whose diagnosis is muddy. What did they do for you in the hospital?

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