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My VIP XMRV results

Discussion in 'XMRV Testing, Treatment and Transmission' started by sleepwalking, Feb 5, 2010.

  1. sleepwalking

    sleepwalking

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    Wild Wild West, US
    Not sure if this was posted already. I've been bothering them about my test results. Very anxious as you can imagine. This is what they sent me:

    Results take 3 to 4 weeks. It takes 10 days to grow the cells before we can culture them for analysis.

    Questions and Answers regarding XMRV testing

    Q: Why is VIP Dx testing for XMRV different from other commercial tests presently being offered?

    A: XMRV testing at VIP Dx uses the same methods which were published in the Lombardi et al. October 2009 issue of Science. Our methods require the collection and appropriate testing of 20 mL of whole blood. While this process is very time consuming and labor intensive, we have found that it dramatically reduces the rate of false negative results. For this reason, the cost of testing for XMRV is greater than that of a standard PCR test.

    Q: What is the turn-around time for XMRV testing?

    A: In order to complete the full testing process and issue an approved results report takes approximately 3 to 4 weeks. This period of time is required to grow the cells for a virus culture to be completed. Due to the large volume of test requests received, we currently have a longer time to process the approved results. If you have any questions please contact our customer service for information.

    Q: Does a negative result definitively mean that I am not infected?

    A: Although we strive to offer the most sensitive test available, XMRV is typically present at a very low-copy number and may be below the limit of detection at the time your sample was tested. Re-testing at a later date is a decision for you and your physician or health care professional to discuss and determine the best course of action. We do not recommend re-testing for 3 to 6 months.

    Q: Is it possible to have a positive result at one point in and a negative result at a later time?

    A: Although retroviruses are integrated into the cellular DNA of white blood cells and are considered life-long infections, it is possible that your immune system may hold the virus to a level below the limit of detection from time to time. Presently, the life cycle of the virus is unknown. If you receive a positive result at any time it is unnecessary to do retesting until more is known about XMRV.

    Q: Are there any treatment options for XMRV infection?

    A: Although XMRV is a retrovirus, it is substantially different from other known human retroviruses. There is much still to learn about this virus and its effect upon the human body. VIP Dx is a clinical laboratory and does not recommend or advise treatment regimens. We encourage you to consult with your physician or health care professional regarding treatment options which may help your body deal with infection.

    Q: How is XMRV transmitted?

    A: Although little is known about transmissibility, it must be assumed the virus is transmitted though body fluids, like other retroviruses.

    Q: Is a serological test available at this time?

    A: A serological test is currently in development.

    For more information and FAQ on XMRV, please visit the Whittemore Peterson Institute website at www.wpinstitute.org
  2. sleepwalking

    sleepwalking

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    Wild Wild West, US
    Five minutes after I posted this I received a call from my doctor's office saying he received the results and my test was negative.

    Just a note that I was taking Valtrex and also my doctor's office didn't send the paperwork with the blood and so my blood was held for a week at the lab until we could get that squared away. Not sure if that would make a difference or not.
  3. _Kim_

    _Kim_ Guest

    Are you okay Sleepwalking? I am in the same boat as you. I was on Valtrex and there was a problem with my credit card and my blood was held up for a bit.

    How are you handling the news?
  4. Hi Sleepwalking - how do you feel about being negative? Was it a PCR or culture test that you had?
    Do be sure to post your results in the poll here in the XMRV forum.

    Rachel xx
  5. George

    George Guest

    Sleepwalking

    I'm kinda of sad for you and kinda of glad for you. This is such a mixed bag. Are you going to get retested later? Are you doing o.k.? Would you like to say weird, nonsensical and crazy things???

    Lot's of listening readers to share with.

    Hugs
    George
  6. sleepwalking

    sleepwalking

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    Wild Wild West, US
    You guys are great. I'm so glad you are here. Honestly I don't know how I feel about it yet. I think I'm really disappointed because I'm so sick and I want to know what is causing it so I can finally move forward instead of back. I've lost so much to this illness; I want to know what robbed me of my wonderful life!

    I did post my results for the culture test.
  7. Hysterical Woman

    Hysterical Woman Senior Member

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    East Coast
    Hi Sleepwalking,

    Keep posting if you can to let us know how you are doing!!! I am sorry that you are disappointed and are looking for validation because you are so ill. At least you can know that we believe that you are ill and understand your struggles. Hopefully there will soon be more research and different findings that will lead you to a more clear diagnosis and treatment options.

    Please take care of yourself,

    HW
  8. ukxmrv

    ukxmrv Senior Member

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    London
    Sleepwalking,

    Are you going to ask VIP dx to store your blood and then retest when the new serology test comes out?

    Hope that you are as OK as possible. It's stressful and upseting to have the test in the first place.
  9. sleepwalking

    sleepwalking

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    Wild Wild West, US
    Yes! #*??//%&XX?

    Yes, I could ask them to store my blood for the serology test, but wouldn't a fresh sample be better?
  10. _Kim_

    _Kim_ Guest

    I'm in agreement with that. If our blood hung around too long and that was the reason it was negative, then we should send in a fresh (Valtrex-free) sample.
  11. George

    George Guest

    Yeah, I'm with Kim, go for a fresh sample when the serology test comes out. Don't give up on just this one test. HIV makes lot's of copies of itself and shows up pretty well, but XMRV only makes a couple and then only during the time when it's turned on so do it again.

    I know I'd be saying all kinds of weird things that might not mean anything later (grins) Things like "bad XMRV, Bad, you know you should have been making copies before this test. What were you thinking??" Yes, I do talk to my possible viruses sometimes. (snickers)
  12. Ahh it's another George classic comedy moment. *giggle*

    Rachel xx
  13. Kati

    Kati Patient in training

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    Remeber they found a + in a 1984 sample? they are keeping all the negatives and apparently will be retested with newer technology. Dr Judy said so.
  14. _Kim_

    _Kim_ Guest

    Right Kati, but if the samples that sleepwalking and I sent in are no good, then fresh blood is the way to go.
  15. GoWest

    GoWest

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    Can VIP store the blood samples and still get a valid result?

    Kim,
    My blood was sent to VIP almost 5 weeks ago. The directions for the sending said that if the blood did not get there in 24 hours they could not test it. Therefore I am confused that they would still test your blood after it sat there for several days. Perhaps you might want to call and ask about this. Could this explain a negative test result?

    Paula Carnes

  16. cfs since 1998

    cfs since 1998 *****

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    I don't think they would offer to keep the blood and test it if there would be a problem with using stored blood. Freshness of the blood and antivirals shouldn't matter for serology antibody testing. It does matter for PCR/Culture obviously but they are completely different testing techniques.
  17. Hope123

    Hope123 Senior Member

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    I agree that you should send fresh samples. I'm not a lab person but am aware there are perservatives in the test tubes; I don't know how long these last under various conditions but having it in out for a week BEFORE it was sent to WPI could possibly affect results. If it sat for weeks AFTER it was at WPI, this might be different since WPI likely knows how to handle the blood best for their tests. You could also ask WPI their opinion.

    In regards to antivirals, during her talk Dr. M said it shouldn't matter for detecting XMRV unless you were taking possibly ANTIRETROVIRALs (which most people aren't doing for CFS right now). This is in contradiction to what VIP supposedly said to someone about not being on antivirals for 15 days.
  18. omerbasket

    omerbasket Senior Member

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    Hi sleepwalking,
    I can't tell you what to do, but I can say what I think I would have done had I been in your position: I think that I would have called VIPdx and ask them if they are redoing all the negative tests with their serology test, which Dr. Mikovits reported should probabaly be available within a month from her lecture (which was two weeks ago). So if they're redoing it, and ofcourse it's free - than I think I would let them redo the test and wait for the results. Had they came up negative - I think I would do the following:
    1) Stop taking the antivirals - if they don't seem to do much good for me and if it's not danagarous in any way and does not suppose to make me resistent to them in the future (althuogh, if they do not good what so ever, it doesn't really matter) - and that's although Dr. Mikovits said that antivirals should not make a difference. It's not that I don't trust her - I do - but it's possible she's wrong.
    2) Wait for a time I would feel very bad.
    3) At that time, when I feel very bad, I would try to draw the blood sample. If by any reasonble way it's possible, I would even try to do this in VIPdx or somewhere close and somehwere were it would get there as soon as possible.

    Even if that serology test came back negative, I would not give up on XMRV, and I'll wait for the FDA approved test and than re-test and wait for the results.

    Remember that not only VIPdx, but Dr. Mikovits as well said the following: If you came back positive on the test, than you're possitive for XMRV. But if you came back negative on the test, it doesn't mean you're negative - and it's possible that you're actually positive.

    Lastly, I would say that let's wait - because it's possible that it would be discovered that people who were diagnosed with ME//CFS, or even fibromylagia or other diseases, and are XMRV negative - actually have another illness, which may be detectable, but thier doctors didn't detect it. So I after all you would be find XMRV negative, perhaps you should get yourself to a doctor which is good in diagnosing, and try to find out what is the underlying cause for your illness (again, if all the other tests for XMRV came back negative - and we are far away from that).
  19. Robin

    Robin Guest

    Well, even if your results were XMRV positive, it's still not definitive that it is the cause of ME/CFS. So much more research needs to be done! Definitely get retested when the testing is better.

    But I know how you feel - my one wish throughout the years of having this illness is an answer to the question: what the hell happened?
  20. sleepwalking

    sleepwalking

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    Wild Wild West, US
    Yes, go ahead and change the post to "my xmrv results" or something like that.

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