Dr. Michael C. Snyderman is taking anti-retrovirals for a very simple reason – they work for him. His elevation of cytokines and chemokines, which are considered by some Chronic Fatigue Syndrome (CFS) experts as classic for subgroups of CFS patients, improved as did his symptoms of CFS and leukemia. Yes, Dr. Snyderman is taking Anti-retrovirals (drugs commonly used to treat HIV/AIDS) to treat Chronic Fatigue Syndrome (read earlier post on use of such drugs for CFS)
A Hematologist-Oncologist and assistant professor of Medicine, Dr. Snyderman believes that where there is smoke there is fire. “There is no plausible explanation for my results other than that treatment of a retrovirus improved my leukemia and my CFS. There is nothing about my clinical picture to say this is an unusual phenomenon.”
Dr. Snyderman’s blood was originally tested for XMRV by Dr. Judy Mikovits, formerly with the Whittemore Peterson Institute for Neuro-Immune Disease (and the researcher at the center of the XMRV-CFS controversy) and came back positive. His blood is now being reanalyzed at laboratories that can do deep sequencing and integration studies. Dr. Snyderman says, “Preliminary data is in favor of my having a unique virus, not classical XMRV.”
Another study in the field is pending and is expected to be published soon.
Dr. Snyderman said he had struggled with fatigue for years, but had never characterized it more specifically. Then in 2007 he was diagnosed with chronic lymphocytic leukemia (CLL) although he says in retrospect the process had been there for a year.
It wasn’t until 2009 when he read about the possible association of a murine related retrovirus in CFS patients that things began to click.
He realized that he met the Canadian Consensus criteria, the same criteria used by Lombardi et al in addition to the 1994 Fukuda definition, to define the cohort of CFS patients they tested.
However the connection that stood out for him was the murine viral connection. Dr. Snyderman had initially wondered if his exposures had led to a DNA virus infection. When he reviewed the literature for a connection between DNA viruses with CLL and cancer in general, he ran into a problem that also plagues the CFS literature – the literature was highly conflicted.
However, he also unearthed what were for him tantalizing leads – studies from the 1970s from three separate and well regarded labs (Sol Spiegelman’s lab at Columbia University; Robert Gallo’s NIH lab and another at UC San Diego) linking MuLVs to cancer. The researchers in the studies found MuLVs (which they compared to the Rauscher murine leukemia virus).
The route since then has had ups and downs, but Dr. Snyderman remains focused. He said that by May of 2010 his leukemia cells were increasing at a rate that prognosticated a survival of only 36-months and pain and fatigue were taking a toll. Treatment of CLL is both toxic and expensive, but has never been proven to prolong survival according to Dr. Snyderman.
“As a Hematologist-Oncologist I felt that I was qualified to decide my treatment,” he said. Paying for the drugs out from his private funds, Dr. Snyderman began using anti-retroviral drugs and responded for nearly 10-months. He said he then relapsed, added another drug, tenofir to which he is once again responding. See the sharp decrease in the Absolute Lymphoyte (white blood cell) count after taking AZT and then Tenofovir (both anti-retrovirals) in the figure above (top right corner)
Dr. Snyderman presented his data at the original XMRV workshop and also at a peer reviewed conference at MD Anderson Cancer Hospital. ”A leading figure in CLL research, Dr. Kanti Rai, thought my data presentation was valuable and we were going to collaborate with his research laboratory,” said Dr. Snyderman.
“My position is that further scientifically designed study of other patients with CFS and cancer is indicated,” said Dr. Snyderman who hopes to have his results published. “My results are a starting point.”
From the entire team at TrialX/CureTalk, we would like to thank Dr. Snyderman for taking the time to talk about his experience and to share his personal health data. We salute such heroes who are helping push the boundaries of medical knowledge.
*A Swedish study was published October 13 which did not find either XMRV or HGRV in patients with myalgic encephalomyelitis.
The authors of the study, “Murine Gammaretrovirus Group G3 was not found in Swedish patients with Myalgic Encephaloymyelitis/Chronic Fatigue Syndrome and Fibromyalgia” concluded, “We controlled for presence and amplifiability of nucleic acid and for mouse DNA contamination. To score as positive, a sample had to react with several of the XMRV/HMRV PCRs. None of the samples gave PCR reactions which fulfilled the positivity criteria….XMRV/HMRV like proviruses occur in the third murine gammaretrovirus group, characterized here. PCRs developed by us, and others, approximately cover this group, except for the INT RTQPCR, which is rather strictly XMRV specific. Using such PCRs, XMRV/HMRV could not be detected in PBMC and plasma samples from Swedish patients suffering from ME/CFS/FM, and in sera from Swedish blood donors.”
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