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Our last hope to treat PML
Feb 4, 1998

Dear Sirs,

You are our last hope.

I am writing for my best friend who has aids. On the 11th of september 1997 my friend went to a hospital with the symptomes of forgetfullness on the short term, difficulty putting words together and bad function of his right foot and right arm. After the doctors found out that he had aids they did a MRI scan of his head. The directly diagnose was that he was infected by the PML virus.

For 2 month (oktober and november)he get the following medicins: Indinavir(crixvan) 3x per day (800mg)

Epivir 2x per day (150mg)

AZT(Petrovir) 2x per day (300mg)

The doctors gave up after 2 month with these medicines as he did not want to swallow the tablets and he became very sick of them. Finally he went from the beginning from december to a clinic for terminal patients.

To our big suprise after a week he start to be very clear in his head and now he almost can follow normal conversations. Furthermore his function in his foot and arms improves a little bit.

We heard that it is normal that after stopping with the medicines there can be a short improvement before he will die. But already for two month he is getting better and better although the docters in the hospitals gave him only 1 or 2 months.

As the hospital does not want to help us anymore we would like to ask you if you could help us further.

Our questions are the following:

1. Is it possible to start again with a new medicine after you already have used a medicine coctail before ??

2. Could you suggest a new medicine for us ??

3. Do you know cases like ours or do you know about people with PML who had a succesfull treatment.

We would like to thank you in advance for your help and if you are not able to inform us please give us other adresses were we can go to.

(Sorry for our bad english)


Response from Dr. Gallant


The best hope for people with PML is to treat their HIV infection very aggressively with antiretroviral therapy. The combination he was on before was a good one but not the only one. If he couldn't tolerate it, it might be worth trying some others if he's still capable of taking a lot of medicaitons.

It's not clear from the story you told me that he's actually resistant to the medications he was on before, so it leaves him with a number of options. I'll list a few combinations that could be considered:

1. Either nelfinavir (Viracept) or ritonavir/saquinavir (Norvir/Fortovase) PLUS. . .

2. d4T (Zerit) and either ddI (Videx) or nevirapine (Viramune)

There's little else we know to do for PML. Some have reported success with a CMV medication called cidofovir (Vistide), but that hasn't been well-studied.

I hope your friend does well.


Need a Change
Acetyl-carnitine and neuropathy

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