“The FDA and NIH have independently confirmed the XMRV findings as published in Science, October last.” mmdnewswire
Celebrating today’s press release from the Netherlands, I would like to report that I am quite sure that the antiretroviral drugs are having a beneficial effect. My daughter and I are a little under and over fifteen weeks of treatment respectively. She started tenofovir as a third drug six weeks ago and I started it two weeks after she did.
We are on a definite uphill trajectory, she more clearly than I. She has been more and more functional and much less miserable for a month. She has gone out for fun socially four of the last five days. Much more time upright. She is planning her life. In the last three weeks, she had one three day dip with a sore throat (not a usual symptom for her). Otherwise lots of pretty good time. I would like to say that she is very balanced about all of this. She is an extremely informed, sophisticated patient. After what she’s been through at the hands of the medical profession, she is pretty much of a skeptic. She is quite sure this real.
I also am better in many ways. I have, however, had mild progression of neurological disease (new sensory radiculopathy which is a recurrent problem). For me, each of the drugs flared my neurological symptoms and then things settled after a couple of weeks. I remain almost free of malaise, a miracle to me after fifteen years of living with it. Reduced symptoms related to vasospasm. In the last week my sleep has normalized. Very big.
For the record, I would like to state publicly that I am not prescribing for myself or my daughter.
Not science. Clinical medicine. There are other factors beyond the antiretrovirals for both of us, though not enough to explain what we are experiencing, in my opinion as a doctor, patient and mother. We are being treated for XMRV. And the paradigm shift that came with finally knowing what is wrong with us has helped in many ways, including choice of pharmaceuticals. No controlled study here. But lots of clinical improvement.