Some patients with Lyme disease have been encouraged to begin anti-retroviral (ARV) drug regimens for a suspected, but unconfirmed infection with XMRV, using medications commonly used for HIV patients. There is no clear evidence to justify such treatment, and significant doubt regarding tests showing Lyme disease patients to be infected with XMRV. Should XMRV have been proven to be a causative factor in Lyme disease, CFS, or other conditions mentioned by the WPI, clinical trials of the efficacy of ARVs should take place prior to patients being treated with such drugs. In bypassing the usual clinical course of treatment development, patients taking the drugs and those who may benefit from them were being done a disservice by those doctors prescribing ARVs.
Anecdotal reports citing success with medications are highly suspect in cases of chronic illness such as CFS where spontaneous improvement are uncommon and adverse effects from the treatment regime may not be revealed for years afterwards. Some of those medications prescribed are also linked with acute medical issues such as ischaemia and heart problems and, as such, ARVs are only recommended for a small number of conditions. Antiretroviral medications include idovudine (Retrovir), Tenofovir (Viread), and Isentress (Raltegravir).
Can Lyme Disease Treatment Increase XMRV Replication?
One other note of concern is that an isolated number of Lyme disease doctors are speculating that antibiotic treatment of Lyme disease may actually increase XMRV replication, with the proposed mechanisms being the Jarisch-Herxheimer reaction some patients experience during the first few days of antibiotic treatment. There is no evidence confirming that this is the case and such speculation could be dangerous as patients may delay treatment for a curable bacterial infection (Lyme disease) for fear of exacerbating an undiagnosed infection with a virus that has no proven association with any human disease.
Other researchers and doctors have since latched on to XMRV as an attractive prospect for explaining chronic Lyme disease symptoms in patients. The retrovirus was also renamed as GRV, or Human Gamma Retro-Virus to remove the association with mice (murine) in the Xenotropic Murine Leukemia Virus-Related Virus nomenclature. All the speculation over name changes to the condition have many patients confused and disoriented in terms of the cause, diagnosis, testing, and treatment for conditions such as Lyme disease, and ME.
XMRV – A Money-Making Conspiracy?
The more cynical may suspect that such disorientation was intended by some peddling tests for an infection not conclusively proven to affect humans. It also appears that the Vice President of VIP Dx, sellers of the new XMRV tests, is Judy Mikovitz, the researcher in the middle of the speculation over XMRV’s involvement in CFS. The WPI is also the parent company of VIP Dx, leading some to believe that it is essentially the profitable arm of the more respectable-looking research institute.
VIP Dx has also partnered with BioRay, a supplement company, and together have promoted findings from a tiny in-house study showing that six out of eleven children with autism who were tested for XMRV had positive results. Furthermore, they imply that XMRV may be passed from mother to child by citing that two of the children were siblings and that their mother also tested positive for XMRV. This ‘research’ is part of the promotional literature accompanying a specific probiotic supplement available from BioRay and recommended by Mikovits. VIP Dx also offers Lyme disease tests, meaning that a patient may feel compelled to pay hundreds of dollars for an XMRV test from the company, followed by a Lyme disease test, then be encouraged to take supplements from BioRay, with all the profits feeding back to the same people much of the time. Where Mikovits’ original study found 67% of the CFS patients had XMRV, follow-up studies found no evidence of infection.
Cooperative Diagnostics Withdraw XMRV Test Citing Ethical Reasons
Another company that began selling XMRV tests shortly after the publication of research showing an apparent connection between the retrovirus and CFS withdrew their test months later. Dr. Brent C. Satterfield, President of Cooperative Diagnostics said that they had “found no evidence of XMRV in people with Chronic Fatigue Syndrome. We have no interest in selling tests for a virus that is falsely associated with disease”. Cooperative Diagnostics, together with the CDC, published details of its research and formed part of the evidence against the XMRV-CFS association that led Science to request a retraction of the WPI paper.
Two multilab studies are now underway to evaluate blood samples from CFS patients and controls. The research is organized by the US National Institutes of Health (NIH) and Mikovits’ team is participating in the blinded research. Results are expected by the end of 2011 and the hope is that the XMRV, Lyme disease, CFS debate will be drawn to a close, one way or the other.
Paprotka et al. Recombinant Origin of the Retrovirus XMRV. Online Science. May 31, 2011.
Knox et al. No Evidence of Murine-like Gammaretroviruses in CFS Patients Previously Identified as XMRV-infected. Online Science. May 31, 2011.
Hué S, Gray ER, Gall A et al., Disease-associated XMRV sequences are consistent with laboratory contamination, Retrovirology. 2010, 7:111doi:10.1186/1742-4690-7-111
Marcus, Amy Dockser, Chronic-Fatigue Paper Called into Question, Online Wall Street Journal. May 31, 2011, WSJ.com http://on.wsj.com/kDzay7
Lombardi, et al: Detection of an infectious retrovirus, xmrv, in blood cells of patients with chronic fatigue syndrome. Science 2009, 326:585-589
Satterfield, et al: Serologic and pcr testing of persons with chronic fatigue syndrome in the United States shows no association with xenotropic or polytropic murine leukemia virus-related viruses. Retrovirology 8:12