Question for Cort

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imready

Guest
I'm wondering if you have been tested for XMRV if so when were you tested and did you get your results? For some reason people feel that their results should be private. I'm waiting for my results and will post if positive or negative and how I feel about my out come. On WPI facebook page a gal posted that her test result came back negative, which made me want to ask her a bunch of questions like, who tested you, when were you tested, do you have classic cfs/me symptoms or fibromyalgia etc...

I guess my point is, where are all the people who have been tested and why aren't they posting about it on one of the many cfs/me sites?

When I get my results if they are negative then I'm going to have a few things to say about my results. I have the classic CFS symptoms there are no gray areas, I didn't have any other health issues before I became sick and my health issues now are classic CFS symptoms. So if I'm negative, then in my mind XMRV isn't the puppet master, just another virus that CFSers catch. Unless my blood testing procedure was inaccurate and I need to be tested later when better testing comes available. I sent my blood to VIPDX and spent $650. And if my results are possitive then once again, In my mind I would think that XMRV is the cause of CFS.

I know, I know, CRAZY LADY....But that is how my mind works.
 
A

anne

Guest
The current commercial tests don't test for antibodies. A negative test does not necessarily mean that you have not had the retrovirus. The lab is also incredibly backed up and I'm not sure many people have their results.
 

hensue

Senior Member
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Vip got my blood on 10th of November

Still waiting have not heard anything. Does the Doctor that signs off get the results? Or will I?
 

Jim

Senior Member
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XMRV & Cancer?

I am really hoping I am negative, and not infected with a cancer causing retrovirus. But I can deal with whatever the result is, even Reeves Disease. The truth is most important to me.
levi,

what makes u say xmrv is cancer-causing? are u refering to the association with prostate cancer? or perhaps just the general degradation of the immune system (e.g. low NK cell function)?

cheers,

jim
 

Cort

Phoenix Rising Founder
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When I find out (gulp) I'll let you know what my results are. I honestly don't expect to test positive; I just don't feel very virally - which I'm sure means nothing. The only time I feel virally is when I get cold - I come down with a virally, fluey problem - or when I really, really overdo it.
 
I

imready

Guest
Cort

Thank you for responding. I'm still waiting on my test results, it's been three weeks now. When I receive my results i'll post it. Should be anyday now.
 
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Michael

Guest
Test results

I sent my sample in on 11.08.09 and received my results on 12.01.09. I spoke with VIPdx they said that they were checking samples twice to make sure of their results. I tested negative for active virus and positive for viral culture. I did post my resullts on Cort's poll.
 

fresh_eyes

happy to be here
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Hi Michael, thanks for posting. You don't have to tell us anything more if you don't want to! BUT :) I'm sure I'm not alone in wishing I knew more about your health situation, to put your results in context. The first question that comes up for me is, are you less sick now that you were at some point in the past? Thanks for whatever you feel like sharing.
 

Nielk

Senior Member
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Test results

I am confused. What is the difference between testing positive for the live virus and the culture? I thought that the way retroviruses work, once they are in your body they become part of your DNA and don't leave.

Would you treat patients differently depending on this outcome?
 
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Michael

Guest
Fresh eyes, a quick follow up and history. I am 52 y.o. male, diagnosis CFS for 6 years. I am between moderate to severe (40-50 points on Dr. Bell's scale). My health has improved a little since my diagnosis, but I am certainly better able to manage it. The XMRV results are confusing because they do not give you any quantative information. I am hoping they will have an IgG test available soon. Michael