Please Note: Due to volume considerations, not all questions can be answered. Questions most likely to be answered will be those of general interest to a broad group of visitors to this forum. Questions pertaining to a specific case; requests for diagnosis, medical advice, or second opinion; or requests for opinions about untested alternative therapies will generally not be answered.
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need help if u can im confused
Apr 5, 2004
i have been diag. with PML and am hiv poz i also hs=ave the anti bodies preasent for CMV does that where the PML came from i have read a few answers on PML on here and thats what im getting from my search but im not shure mabee its me or the PML im not shure and i refuse to accept the 1 year diag. im still alive goning on 8 mths and i feel fine should i ask my dr about the codofir and or the interferon oh yea BTW my dr is dr whol hes a great dr im very pleased with him
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Response from Dr. Pierone
PML, or progressive multifocal leukoencephalopathy, is a very serious brain infection caused by the JC virus. It generally occurs in people with AIDS that have low CD4 counts (under 50 cells). It often presents with weakness in one part of the body that increases in severity gradually over the course of weeks. Before the availability of effective antiretroviral therapy for HIV, most people with PML died within a year of diagnosis.
Now when someone is diagnosed with PML (usually by lumbar puncture or brain biopsy) they should be immediately started on antiretroviral treatment. This leads to stabilization of the neurological deficits in most and improvement in some. For people that do not improve with treatment directed at HIV (to improve immune function), then cidofovir (Vistide) should be considered. There are uncontrolled reports of clinical improvement in patients with PML treated with Vistide and I personally have used it and think that it helps some patients.
If your doctor is "the Dr Wohl" from our starting treatment forum, then you are in the hands of a very experienced and thoughtful doctor. He will make sure you are up to speed on the latest advances regarding PML. Best of luck!
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