Have not gotten my test for the xmrv virus

Discussion in 'Fibromyalgia Main Forum' started by hensue, Oct 15, 2009.

  1. hensue

    hensue New Member

    Just wanted to let you know I am still waiting might be two or three weeks. Like I said I am not getting my hopes up I tested negative for mycoplasma 100 years ago. I have severe fibro and chronic fatigue, both parents died of cancer and my husband has hepatitis C.
    So I figure before this health care bill passes, I dont know if it will be good or bad I would go ahead and do the test.

    Take care

    ps also have not gotten the interactive thing I am suppose to get in the web site. For you to be a candidate for there research. Hopefully I will get that soon.
    I get no ssdi and have been trying forever and I am mad>>>
  2. Rafiki

    Rafiki New Member

    I know you had a lot of questions about testing. I saw the testing question was asked of Nancy Klimas in today's NYT's piece. Here it is. Hope this helps you in your decision making process.


    Is there a specific test, blood or other, to determine whether a person is infected with the XMRV virus?
    Beau Brincefield


    Dr. Klimas responds:

    The test for XMRV that has been reported is currently used only in research settings. The research director of the Whittemore Peterson Institute, which was involved in the recent findings, was quoted as saying they were developing a commercial assay that they expected to be available “within weeks.” Several other commercial laboratories are also developing assays.

    Some important points: First, antibody tests mean you have been exposed to a virus and do not tell you actually have an active infection. Second, a technique known as P.C.R. assays measures something called “viral load,” and the assay is designed to measure either active replicating virus or latent (inactive) virus. Either measure would be helpful with this new virus, but we don’t have access to them except in research settings.

    Another way to see if you are infected is with viral cultures. The recent study published in Science used both cultures and P.C.R. assays.
  3. hensue

    hensue New Member

    Here is my question and I will look on line but had to laugh usually I know the def of all words that is my thing. What is assay???
  4. shelby11

    shelby11 New Member

    What is this virus and the test? Newbie Meme
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Forgive me if I have not been keeping up very closely in the last week. So if you get tested and have the positive results for the virus (latent or antibodies or whatever) then what? How does that affect treatment. Don't get me wrong, I am excited by the news. I just don't know what I personally can do with the information. Remember, even 4% of normals show positive results.

  6. Rafiki

    Rafiki New Member

    I'm glad you saw that because I realized it wasn't clear that everything following the question was a quote from Nancy Klimas and not a comment by me.

    It seems that she believes complete testing is only available in a research setting now. With so much effort under way to provide us with a test which will be vetted by the researchers involved in the study, or approved by same, I remain concerned about the accuracy of the available tests.

    All the best to you,
  7. hensue

    hensue New Member

    Possibly I do not see why not? I have been in touch with red labs and whittemore peterson.
    Even if I was tested now I could be tested again when wpi have the test.

    [This Message was Edited on 10/16/2009]

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