XMRV testing and quantification ?

Discussion in 'Fibromyalgia Main Forum' started by Dantes, Nov 1, 2009.

  1. Dantes

    Dantes New Member

    I watched several clips from the CFSAC meeting and I wonder about testing, etc.

    Dr. Coffin was very cautious when answering questions. He continued to stress "more" is needed, etc. and I completely understand this, because more is needed...

    However, for those of us that are trying to get the WPI/VIP labs test, is it a waste ?

    Will the test just be a "positive" or "negative" type test ? Will it have accurate titers and should it be ordered with an immune panel [B/T Cell counts, RNase L, etc. ?] so an association can be determined... Or am I jumping directly into their research ?

    Dr. Coffin also mentioned that, from what he knows, XMRV is very slow at replicating and infecting new cells. [Or maybe I got that wrong]

    While I feel that I will be jumping the gun with testing, I am just suffering too much not to. I want there to be some kind of quantification in the testing.

    I know many of us want to take the wait and see approach but our bodies are pushing us in a different direction. If this turns out to be the cause of illness, for even a small number of us, then it will only get worse with time. I hate to be a guinea pig but this is just too hard to live with.

    Anyway, just looking for thoughts on XMRV testing for those that watched the meeting online.
  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Given that the treatment likely to be tried on us are existing drugs for HIV, I don't feel there will be great danger in being a guinea pig.

  3. Dantes

    Dantes New Member

    Tina, that may be true but HIV resistance is growing every day.

    This is the only reason I would not want to be a pioneer with HIV drugs. I do completely understand that they are different viruses but the chance of resistance is there.

    Some docs that used Valcyte even expressed resistance, after a certain time period.

    Basically, I just want to know that I am making the right decision, by getting tested.

    Short of becoming a WPI test subject, it would take months-years before a treatment protocol emerged. I don't feel like I have that kind of time.

    As much as I am afraid of the future, with this new virus, I am more afraid of NOT having it.

    Lyme was eliminated for me, about 6 times. EBV & CMV were eliminated by Dr. Lerner [Hell, I didn't even have a single antibody for those]... surprised both of us. Not to mention all of the other tests I have had over the years...

    All I have going for me is HHV-6 and possibly parvo. So, I may be one of the non-EBV,CMV people out here. So I am placing a lot of hope in XMRV. Perhaps too much.

    If it turns out to be "real", then it could be what is causing most of my problems because I have tested negative for most all co-infections. I guess that is why I really want this test.

    Funny, it looks like I have basically talked myself into it... strange how things work out : )
  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Each of us have to make our own decision based on our personal circumstances.

    I showed positive for a post-mono infection only the second time. Didn't show the first time, just a month earlier.

    I don't remember my HHV-6 test. But I was positive for Parvo. In fact, one rheumatologist, before I was diagnosed with CFS, thought my symptoms were lingering inflamation from a parvo infection. I knew better. I knew I had not had any infection in the previous year.

    Except for the last week and a half, I have been having medium symptoms. I go out one day for four hours, stay home and do light housework and computer work the next day. And then I can go out and be active for a few hours the next.

    Since I don't have to have a full-time job, I don't have the strong motivation to spend the money to get tested or do anything inconvenient.

    I am concerned, as I have learned recently, about the increase risk of cancer. No one has emphasized that to me in these last three years or in all research I have done. Just one mention on the list of what CFS people die from, but it didn't say an increase of chance from general population. But with reading more of the Incline Village outbreak, the increase cancer risk is strongly suggested.

    So I need to be very concerned with my natural killer cell levels. I think, honestly, that I could likely use my level of fatigue / other symptoms as a barometer of my natural killer cell level.

    But I think I need to pursue more monitoring of it. And to do that, I think I need to go an infectious doctor or immunologist. And if I am going to one of those, why not go to one who is researching XMRV.

    I e-mailed WPI asking if they had a researcher in Birmingham, Alabama contact them. I called their number, but it was rolled over into voice mail. And you would never guess, but their mail box was full.

    So I will keep trying, but I will be patient. In the mean time. I will take selenium (suggested for HIV people) and Proboost Thymus Protein A, some mushrooms for immune system and sleep meds - all of which is to boost the immune system.

    Of course, this is in addition to Ambien CR, Vit. D, and cortisol.

    If anyone hears of someone in Birminghamm researching XMRV, let me know.

    Althugh we all have different personal circumstances, including illness level, finances, etc., sharing our reasoning can help bring out points that might help each make a decision.

    The retrovirus person said last week that it was within reach to have a standard XMRV test (approved) within six months. I read somewhere yesterday that Quest and LabCorps have asked about getting a test. That's the two largest lab companies in the U.S. So it won't be long until you can go to your local internist and ask for the test. Now, how long will it be before insurance pays for it, I don't know. Is anyone lobbying for that now? We can't leave that out of the effort.

    [This Message was Edited on 11/02/2009]
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    It is so ironic that a lady I knew over nine years ago called me this weekend. She has HIV. I met her about six months after her diagnosis. She was diagnosed shortly after she got the HIV from her husband, who was an intravenous drug user. She was pregnant at the time and was tested for HIV in the beginning and had a negative result. Four months into her pregnancy, she was tested again after she saw her husband's first wife die in the hospital from AIDS. This time she showed positive.

    I was thinking of her last week, with all this talk of us having a virus similar to HIV. I wondered after all this time if she was in fact alive. I don't know if it was telepathy or divine intervention, but strangely, she called me this weekend after nine years, at least.

    She is doing well. Married, 13 year old son (the one she was pregnant with when she was diagnosed), still working in a hospital (three days a week), and loving her life.

    She had her in laws with her when I called her back after she left a message. And they don't know of her HIV status. (Of course, her husband does, but her in laws who live out of state don't.) So she could not talk openly about her health. But she didn't seem to be having problems. I was curious about her regiment.

    I know when we saw each other often years ago, her regiment was tough, lots of pills at a certain time. (I know how she feels now.)

    I also remember that she was not always faithful to the regiment. At one point, because she did not follow it as she was instructed to, the virus developed an immunity to the treatment. Her immune system was so bad she was in an AIDS status, but she had not gotten a secondary infection or cancer yet. So they had to change the drugs used in her treatment. There was some concern that she might run out of drugs to keep the virus if she kept creating an immunity by not following her regiment. This is what made me wonder if she was still alive.

    But I do remember either then or reading later that they are all the time coming out with new anti-HIV drugs.

    Well, she is doing well now.

    I am not drawing conclusions or telling anyone what to do. But it seemed to fit here.