Recently I wrote you regarding my other half whom had the pacemaker and PML. I read your response and realized that I perhaps needed to give you a little more info. The drug regimen we are currently is Epivir, Retrovir, Viracept,Zovirax, Mycelex, and Bactrum. The intra theraphy I referred to is Chemo with Cytarabine. Part of my reason for asking the first question was concern about the information I had gotten at this site regarding the Cytarabine. We are currently doing the fourth chemo treatment. They are spaced apprx two to three weeks apart. His CD count when intially diagnosed was 159, and as we started the treatment it was 179. The neuro doctor ordered an addit cat scan, however the primary doctor didn't think it was necessary, the first scan done in early Nov showed the nothing, two wks later another Scan, both enhanced, the second showed the nerve damage. The neuro doc doubled the dose of the AZT. Another scan has not been done since Nov. We have seen marked improve, however it seems to be halted currently. Is that normal? After the second chemo the white blood count dropped and the primary doc cut the AZT by a third of the dosage. And I think I'm noticing in him memory loss, not the kind that you'd say oh yeah he's losing his memory. He just seems to halt and have to think about things he never had to think about before. Is the Cytarabine accepted treatment for PML? We had heard quite a bit about interferon, it was talked about but the primary pyhsician followed what the neuro decided the treatment should be, so we're doing Cytarabine. We have a slight prob with communication between the primary and the neuro, the neuro we understood wanted to add another inhibitor, the primary, because he saw results, as did we, decided he didn't want to that. I asked the primary doctor today about the Cytarabine and I was concerned when I queried him about my concerns about the Cytarabine, and his response was why would the Neuro prescribe treatment that would be dangerous. Yes I know we don't know a lot about HIV....we're learning quickly, as this has all happened in such a short span...the pacemaker in Sept, the Hiv in Oct, and the PML in Nov., and we've been doing Chemo since Dec....so it's a lot to take in. And unfortunately I have an other half whom is a "nice guy", he'll do whatever they say, because he believes they know best, so it makes it difficult to "rock the boat" or raise questions that might shake his faith in his doctor. And because I'd like to keep him around for awhile, I have approached all of this with trust, but skeptism, especially after some of the handling by the various persons involved. Thanks again.

Thanks for filling me in. The antiretroviral combination he's on is a good one, and if he does have PML and is having a good response to the drugs (an undetectable viral load and rise in T-cells), then that probably accounts for most of his improvement. Cytarabine (also known as Ara-C) has been studied for PML, but the results were not very encouraging. The same is true for interferon, though there are still some ancedotal reports of improvement in people who developed PML with relatively high CD4 cells.

I should mention something that I forgot in my first answer. There have been anecdotal reports of improvement in PML in patients treated with the anti-CMV drug, cidofovir, Vistide, and people are starting to study it. From my discussions with HIV-neurologists, Vistide is "in" and Cytarabine is "out," (but then remember that Cytarabine used to be "in," too, so who knows what will happen with the Vistide studies.

Finally, it's important to point out that PML is not always an easy diagnosis to make based on brain scans alone. The only real way to make the diagnosis is by brain biopsy, but we now can also do PCR analysis on spinal fluid for evidence of the JC virus which causes PML, and that strongly suggests the diagnosis. There are other things that could be mistaken for PML, both by symptoms and by radiographic appearance, especially HIV enceophalopathy, or the AIDS dementia complex. If that were the diagnosis, the treatment of choice would be aggressive antiretroviral therapy, possibly with higher-dose AZT (1000-12000 mg per day).

I hope that gives you a little more information to go on. JG