TWiV 132: Virology 911

8 May 2011

alfred sacchettiHosts: Vincent Racaniello, Rich Condit, Dickson DespommierAlan Dove, and Alfred Sacchetti

Vincent, Rich, Alan, and Dickson speak with Alfred Sacchetti, MD, Chief of Emergency Services at Our Lady of Lourdes Medical Center, about viral infections encountered in the emergency room.

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  • Guest

    By Doctor Deckoff Jones,

    http://treatingxmrv.blogspot.com/2011/05/shell-game.html

    The Singh paper was yet another study where an apparently decent
    scientist proved beyond a shadow of a doubt that she couldn’t find XMRV
    in anyone. Or at least that she couldn’t find a VP62 plasmid clone in
    any CFS patients or controls. But since she did not use a human isolate
    as a positive control, her results are meaningless. She also proved
    again that a test derived from monkey antibodies to a VP62 clone doesn’t
    detect anything in humans. What she didn’t prove is that XMRV and other
    similar viruses are not infecting humans and she certainly didn’t prove
    anything that doctors or patients should care about with respect to
    their treatment decisions. That she would presume to comment is
    outrageous.

    It hurts more because she seemed to be our friend. I met her in Reno
    last August. She was very excited by our responses to antiretrovirals,
    chosen because of her in vitro drug testing paper. Interesting that she
    was able to find XMRV in human tissue when she was studying prostate
    cancer in 2009 (
    XMRV
    is present in malignant prostatic epithelium and is associated with
    prostate cancer, especially high-grade tumors. Schlaberg/Singh)
    . Odd
    that she so recently applied for a broad patent with respect to the
    virus. Then she stabs the WPI, a collaborator, in the back. Very
    peculiar behavior. My best guess? Follow the money.

    In my opinion, the scientific community is still asking the wrong
    questions. It is important to validate the original work of course, but
    that is a very small part of what needs to happen. Given that it is
    obvious from the pathology that we are dealing with one or more
    previously unrecognized retroviruses, most likely simple animal
    retroviruses that jumped to humans in some way, the correct question is,
    which virus or viruses? Not how do we make this one go away so we can
    all go back on coffee break, rather than recognize the public health
    disaster in front of our noses. Pretty poor performance, even for
    government work.

    Since the science is progressing glacially, it is not possible for me to
    evaluate what antiretrovirals are doing for me now, having taken Viread
    and Isentress for more than 14 months. However, I am approaching 90% of
    function this week, still in Hawaii. I have been out every day, most of
    the day, for 12 days. I went snorkeling (a little). I have walked up
    some steep hills. I have had no PEM. Only very brief episodes of feeling
    sick, which are not severe and pass quickly. I am eating, sleeping,
    dreaming normally. I am not short of breath at rest, or even with
    reasonable exertion. I am very deconditioned, but feel like I can start a
    measured program to get back in shape. I am choosing upright and the
    usual energy calculation that runs through my head when I think about
    whether to get up or not isn’t happening.

    I do think it likely that this latest improvement has something to do
    with the change in altitude; I became polycythemic when I moved to Santa
    Fe, which is at 7500 feet. I could exercise and was never short of
    breath without appropriate exertion before that. It will be interesting
    to see how I do when I go home this week. It may be that going back up
    will be good too, due to epo which is anti-inflammatory. Athletes know
    that going up and down is the hot ticket. I’ve been thinking about
    transitioning to the islands since I left in 1981, but never seemed to
    be able to make it happen. Our son is finishing up the 11th grade, doing
    really well, and we are committed to keeping our home in Santa Fe at
    least until he graduates. But life is full of possibilities again beyond
    the bed and the couch. My life has improved immeasurably from the
    positive XMRV culture I received from VIP Dx a year ago January.

    Sleep architecture is an important indicator of severity of illness in
    ME/CFS, certainly for me, but for many others as well. I had been
    sleeping better for some time before this trip, so the improvement I’m
    experiencing isn’t all from palm trees and tropical air. It is hard for
    me, currently beating the odds (knock on wood), to believe that
    antiretrovirals are hurting me. Though it is possible that I have
    improved further from going off AZT, I still believe that it helped me
    in the beginning. It should be remembered that an efficacious treatment
    paradigm may turn out to be completely different from what has evolved
    for HIV. It may be possible to take antiretrovirals for a time to knock
    it back, clean out reservoirs, in conjunction with other things that are
    conducive to proviral latency. Even inhibiting replication, provirus is
    sitting there silent, or waving in the breeze. Our knowledge of HIV
    suggests there are things we can do to encourage latency. Our
    observation of the disease over decades has taught us that the balance
    can be tipped in our favor in various ways. Working with the internal
    and external environments is crucial for recovery.

    As for Dr. Singh’s desire to practice clinical medicine? I guess she
    thinks this patient should not be allowed to continue his meds. From my
    email this morning:

    I tested positive for XMRV. I have been taking zidovudine,
    tenofovir, and raltegravir for just over 5 months. I started over a 2
    1/2 month period and I was on all three by January. Since the end of
    January, I have experienced very short periods of unmistakable clarity
    and no symptoms (much more pronounced compared to any period of reduced
    symptoms that I may have experienced in the past twelve years that I
    have been ill).
    I wish I could report that Ali is doing as
    well as I am. She didn’t change noticeably one way or the other from
    stopping AZT. She is in no way as sick as she was when we started this
    journey. She is stable, but still just below the surface. She has been
    having some MCS symptoms recently. We are going to step it up again,
    considering mild HBOT, Meyer’s cocktail/glutathione IV’s and possibly
    Nexavir. Ali has inflammatory skin stuff and Nexavir is indicated for
    skin problems; always good if a therapeutic option addresses more than
    one problem. She only needs a small additional increment of improvement
    to be able to get a life again. She is hoping to experience Hawaii too.
    Neither of us would stop the things that have helped, Actos, Deplin,
    B12, vitamin D, bioidentical hormones. Nor do we have any inclination to
    stop antiretrovirals, certainly not on Dr. Singh’s say so. We have done
    too well on them so far to rock that boat. We need to keep building on
    our gains.