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aren't I sort of entitled to this?
Feb 2, 2004

Is it a person's right to take any drug he or she desires in a time of illness? I have a severe myopathic syndrome that I believe was transmitted to me sexually, but that my doctor thinks was not. My health is declining fast along with my body. Being as I am sexually linked to a string of people with a similar syndrome but who test negative for HIV, I would like to try a round of HIV meds just to see if the properties of the drugs can inhibit what I believe is an infectious agent in my body. I'm going to die anyway at the rate I am deteriorating. What could it hurt to allow me to try these various inhibitors on a trial basis? If the side effects are too much for me to handle, I can stop. If I find them to be well tolerated, but my syndrome still continues, I can stop. If the syndrome stops after initiating therapy, one of two things would be brought to light. Either it would prove I have an infectious agent replicating and causing my problems, and that I am lucky enough to benefit from the broad effects of HIV meds, or, the entire recovery would be purely a placebo effect. If the truth were that it was a placebo effect, wouldn't that be better than my already poor prognosis? I want to live, and I am willing to try anything.

Response from Dr. Wohl

I can certainly understand your willingness to try anything to feel better but this seems like this is a discussion you need to have with a clinician. This forum is dedicated to answering the questions and concerns of HIV-infected persons who have or are considering starting HIV medications. DW



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