Dr. Holtorf is interested in hearing how antiretroviral treatments are working for patients.
Dr. Holtorf here. I was hoping to get some info from you and members of the forum.
We are starting to do more testing and treatment for XMRV on our sicker CFS patients (those that have failed other antiviral therapies such as Valcyte and Lyme Rx). As would be expected, most of our positive XMRV positive patients are also positive for chronic active EBV and HHV6, which would be expected due to immune suppression, but also for Lyme so more clouding of which one is the primary vs. secondary opportunistic infection as well as specificity and sensitivity of the tests.
While I am not convinced that XMRV is the cause in most patients, I of course, have to keep an open mind and am always willing to change my mind if supporting data comes out. At this point with the evidence, I think it makes sense to give a trial of antiXMRV therapy for those who have not responded to other therapies and have tested positive. There is really no data on effectiveness of treatment, especially considering all the potential options, so the data is anecdotal at this point so we need to work with that (all therapies are an evaluation of risk/benefit ratio so patient selection and a mutual decision with a knowledgeable patient is the key).
Thus, I am interested in hearing about patients who have undergone or undergoing treatment with antiretroviral therapiesgood or bad (an initial decline may not be all bad). Thus, I am hoping to hear from anyone that has been or is currently being treated with the antiretroviralsIll also post as we get some feel for the effectiveness of treatment. Cort, please also feel free to email me or call to discuss.
Thanks and keep up the great work.
Kent Holtorf, MD