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My XMRV Culture Test is Negative

Discussion in 'Lifestyle Management' started by vdt33, May 25, 2010.

  1. vdt33

    vdt33

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    Texas
    God help me and my family because no one else can. Five generations of my family have been affected by this illness to different degrees -- my grandmother, my mother, my aunts, me, my son, and my grandchildren.

    Now that I have tested negative to XMRV, I won't be able to convince anyone else in my family that they have this illness and they need to try to find something to help them.

    I felt I was the perfect specimen for this XMRV retrovirus infection. Now I have to continue to live with this confusion, this chaos, this inability to get help, this unbearable life -- with no answers.

    I am going to try retroviral drugs. I have nothing to lose. I have done everything to try to cope with this illness and get over it for 35 years. There is nothing else for me to do. I would say that anyone younger than me should be more cautious. There is a real chance that they will eventually find something to help you, but I have run out of time.

    I watched that documentary on channel 4 and HBO last night called Lazarus Rising. There were people who were dying and looked like walking skeletons who made a miraculous recovery after taking the anti-retroviral drugs for only four months. They were laughing, working, taking care of their families. I couldn't believe it.
  2. HopingSince88

    HopingSince88 Senior Member

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    Maine
    VDT,

    I agree with Kati. You need to remember that only 67% in the WPI study tested + before being tested for antibodies...and then all but 1 person was found to have it. This test should be out this summer. I was so afraid of a false negative result I have put off testing for myself and my family until this test is available.

    Hang in there!
  3. Abraxas

    Abraxas Senior Member

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    I watched that too, the change before and after taking anti-retrovirals for as little as 40 days was dramatic.

    Like the others say, there's still a chance you'll test positive when re-tested by the new method. Good luck.
  4. jewel

    jewel Senior Member

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    Vdt -- How disappointing (understatement)! It shows how sick people are that so many are hoping to have this retrovirus. And, with the newer test, you may have it. Also, remember, that there are the other approaches (e.g., Lerner with treating multiple viral and bacterial infections over the long haul, enteroviruses, etc. ) But, here's to hoping the anti-body test does it for you. Take great care, J.
  5. flybro

    flybro Senior Member

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    pluto
    Sorry VDT,

    I keep trying to say something, but I cant find anywords.

    all I've got is hugs
  6. lululowry

    lululowry Senior Member

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    Athens, Georgia
    I'm sorry VDT, but as all these wise folks have counseled, this is not the definitive test, nor the only hope for treatment.:hug:
  7. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    vdt33,

    I'm very sorry you had to wait so long, and now you will have to wait even longer. How very disappointing. It's hard not knowing after all this time. Please hang on we're really all in this together regardless of our test results.

    Hugs.

    :hug:
  8. _Kim_

    _Kim_ Guest

    Aw vdt, I'm so sorry that first you had to wait so long and then to get this huge disappointment. Like Kati, I tested negative by PCR and Culture.

    I do not consider myself to be XMRV negative. The tests are just not that precise yet. I hope you will consider retesting once the serology tests are out.
  9. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    I feel your pain vtd33, I'm over 26 yrs now and 60 yrs old. I'm waiting to hear back from support in Cal. to see if I qualified for free or cheap Ral. If I do, I'm taking it as soon as it arrives! I have totally had it with this disgusting life altering illness! I haven't tested for xmrv but it doesn't matter, I know my body and I was diagnosed by one of the best in the 80s and even appeared with him on Nightline! enough is enough!!!!
  10. vdt33

    vdt33

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    Texas
    Thanks to everybody for helping me put it all back in perspective. :hug:

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