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PML Recovery (?)
May 3, 2000

I have a friend who was very recently diagnosed with PML, at the same time he was diagnosed HIV+. He has already lost the majority of his eyesight (why he went to the doc initially), and is experiencing some motor control function loss as well as other CNS quirks (numbness in different parts of body, the feeling of being bitten by bugs).

I read through all the PML FAQs here I could find. Those Q&As, with the websites "re: PML" I could find, have confused me. All the websites give the stats of only 3-4% of HIV+ patients contracting PML, with approx. 90% of those not surviving past 4 months, or 6 months depending on which site you're reading.

Surprisingly, here I'm reading of people who have survived much longer with it, although I'm not certain of their quality of life (thus my confusion).

Basically here is my question: my friend is taking the standard HIV meds, and has begun IV therapy for his PML (actual ingredients not known). Providing that the meds work as planned, will the lesion(s) in his brain lessen and restore at least some, if not all, of his eyesight?

Please respond as quickly as possible. The family, which includes those of us trying to help, is about to fall apart due to the stress and not knowing anything for certain, as well as the fact that not only is he sick, his wife also found out she is HIV+ at the same time he did, but is healthy so far, thankfully.

Thank you for any information you can provide.

Response from Dr. Feinberg

Because of the effect of combination HIV drugs on boosting a patient's immune system, some people with PML have been able to improve significantly and to live longer than what was reported in the past. I hope your friend is on such a potent combination (usually with protease inhibitors and/or efavirenz). He is probably getting IV cidofovir as well. He may indeed recover some function, but unfortunately it isn't possible to predict exactly how much or whether his eyesight will improve.

thanks again !!! :)

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