Re: Anyone on this usergroup

[Guest guest]

I haven't heard about it for a long time. Back then they would treat it with cidofovir but the best thing to do is to treat with HAART and when they get immune control of HIV and a boost in CD4's the immune system takes control of the JC virus. Unfortunately some of the damage to the white matter of the brain does not resolve. Although I do believe that the brain is amazing, a hundred years ago we thought that damage to the brain from a stroke was permanent, but now many people get full function with therapy. Apparently the JC virus damages the myelin (kind of the skin of nerve cells), I know there is research going on to try and repair this damage because there are other diseases that cause damage to the myelin. I don't know of present therapies, natural or pharmaceutical, but it is something I've never researched (not even an internet search). Hopefully someone on this list of something to help you. I knew someone in the early nineties who had it and died soon after but fortunately now ,apparently, the survival rate is 50%. I've just heard of a friend of a friend who has it so I've become interested in it. I wish you all the best and hope people in this group can help you and I hope you can keep us updated on your condition.

Sousa

---- Original Message ----

From: Waters <timothywaters@...>

< >

Sent: Wed, Jul 25, 2012 10:08 pm

Subject: Anyone on this usergroup

have or hear of PML encephalopathy b/c I was diagnosed w/ that but until very recently was never told what I had, just was told through others that I would never walk or ever live which I have done both. What I question is, is it going to go away or will I have this for the rest of my life b/c have so much nerve pain. Taken medicine to control it but still hurts like hell. One small thing that is good I am prescribed Medical Marijuana which I love to smoke . Still anyone have this or is this a thing of the past b/c of ARV's?

Thank you,

Tim