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P M L


For a well written article on PML in general click on:

SF AIDS Fdn: BETA 9/97 -- Progressive Multifocal Leukoencephalopathy


Another article with a bit more scientific detail:

PML in Patients with HIV Infection


For more information on AIDS treatment in general visit the BETA website:

SF AIDS Fdn: Bulletin of Experimental Treatments for AIDS

This is where I got the first article.



This one was sort of general, but it did point out that a Herpes infection of the brain, which James doctor had said was a
possibility, is treatable.  I have to discuss this with his new doctor.  It also mentions Topotecan.
POZ: Brain Drain



This one mentions a French study where a significant number of people had survived at least two years with just aggressive aids
treatment (and also some about other possible treatments, cidofovir I think)
(might be a dead link?)
 Project Inform's PML Quick Sheet ( HIV / AIDS Treatment Information )



I found these last two on:
 The Body: An AIDS and HIV Information Resource
by doing a search on "pml".  Check them out if you haven't already.


James has had PML (presumably - he hasn't had a brain biopsy) since early May of 1998.  He lost his speech at first.  It
was so quick and dramatic we thought it was a stroke at first.  For the next few months he would alternate between getting
worse to holding his own.  He got bad enough he was put on Hospice (he was until early 1999) and it really looked like he wouldn't last much longer.  We decided that there was no point in keeping him on his AIDS medicines (Nelfinivir, Stavudine, &
Lamivudine).  He was really bad, not in his right mind, acting like a small child, trying to excape from the yard, falling like 10
times a day, couldn't swallow well, going through about a dozen diapers a day.  Then, within the space of two days he
improved dramatically.

His former doctor and nurses warned that the improvement probably wouldn't last long, but this was, but that was more than a year ago, and since then he has at least been slowly improving.  I had him put back on his AIDS drugs, and also antidepressants (he looked depressed).  He acts like an intelligent adult human again, but still can't talk or write.  Diapers are a thing of the past.  But the improvement is slow.  He is still struggling, doing a little more each week.

James has never taken any specific treatment for PML.  Early on I asked him if he wanted to try any experimental treatments,
and he said no.  I would have if I had been in his place, but we are very different people.  Like I said, he has never had a brain
biopsy (the neurosurgeons wouldn't do one) or any other test specific for PML, just a series of MRIs and the process of
elimination ( they thought it was toxoplasmosis at first).  I credit his longevity and his improvement to pure stubbornness.  He
was just here "talking" about this letter (he can usually do yes and no pretty well, and I have gotten good at questioning him),
and agreed with that statement, but probably also credits God/Jesus, something like that.  He is very religious (I am not).  But faith can be a powerful thing I guess.

James' T cell counts have been going up from somewhere around 150 when this started to somewhere in the mid 200's last time
I updated this page.  His viral load bounced from some unknown number at first (someone didn't do the test the first time around), to undetectable (>500/ml), to 13,000-ish when he was off his medications, to undetectable (>50/ml) last I updated this page (9/4/99).  He wasn't on any medications at all when this started.  He had known that he was HIV positive for a couple/three years, but had not been sick, and had only started going to see the doctors at the VA hospital about a week before this all started.  He is one of those people who hates doctors and pills.
 



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e-mail Chris Johnson (j.charles@lycos.com)