TWiV 132: Virology 911

1 thought on “TWiV 132: Virology 911”

1. 

   Guest

   9 May 2011 at 12:42 pm

   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.

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