Meds, Mind, Body & Benefits > Mental Health & HIV

Neurocognitive Issies Anyone?

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I've been positive for 22 years, 12 years ago I was diagnosed as a "paranoid schizophrinic".  The diagnosis should have been AIDS related dementia and I ended up in a phyciatric care center.  My t-cells at the time where below 50.  I was hearing voices, seeing things, and just plan "out of it".  Thanks to the cocktails my health has greatly improved.  I decided to go to college and I got my AA, then I got my BA, then a MSW (graduated with a 4.0), and am now working on a MPH.  My advisor tells me I have to get my PhD next.  I have to work hard to stay on top if my classes, but I am driven to not give up on life.  Sometimes I wonder if HIV has affected my capacitiy to learn and retain information, and then I wonder if all the pot I have smoked has affected me, then I think, hell I'm getting older it just an aging thing.  I have been very blessed and I wish you the best.

I first experienced dementia back in 1988. Noticeable lapses in memory, spelling...leaving out letters...some speech gaps...stuff I was aware of capacitywise.  Very depressing. My doc ordered a brain scan. They saw something ...but mostly just noticed it.  I took AZT for 2 weeks and symptoms went away. We never did another brain scan follow up  I was an AZT refusnik because of intolerable side effects but thought something was happening brainwise so it was an available option.  In 1995 I had stopped many of the available drugs because of side effects and I was experiencing mental capacity problems...again.   I had run my business for 18 years so some routine tasks were like autopilot...but I was having lapses, problems, etc...very depressing. I applied to get in a dementia clinical trial using ziagen...which was surfacing as a new drug but untested in people.  It was supposed to have good brain penetration...whatever that might  I took a series of screening tests and "the good news is you don't qualify" "the bad news is you are borderline".   I petitioned Burroughs Welcome to let me in the trial because I had limited treatment options... They wanted to assess the drug in people so they let me in...  Within 3 days of taking drug...I could feel my old cerebral self...a wonderful feeling.  AIDS dementia exists and it is reversible.  That is good news.     

Its so depressing to be notice the clues....those subtle capacity changes...which are only noticeable to us.  I remember some dismissive reactions..."its the stress of being infected"  "the stress of seeing so much death and friends declining" "you're getting older"  NOT... of course I was but these experiences were distressing and noticeable...mostly to myself.    ziagen has been good for me on the mental capacity salvage and then stabilization.  I am still on it over 10 years later ...with viracept and far no resistance.    A relatively side effect free combo....lipowise, Peripheral neuropathywise,....

I've taken multiple treatment interruptions....experimented on myself over the years...and several times I restarted because I could feel "something mental" happening.  Getting back on meds knocked out whatever was evolving cerebrally.   That's my story....a great feeling to have a mental comeback....

I think docs dont understand the cerebral problem like they eventually will. Similar to some of them not being sensitive to our peripheral neuropathy feedback....they haven't experienced it....

Dementia is treatable.  Good luck.   

Thank you, everyone for all the feed back. I can't begin to tell you how much it helps!

The Nuero cognitive challenges are not clearly understood, even by the so called best of the best doctors...........looking at this together and sharing our experiences really gives great insight and helps with my understanding.

Going back to school is exactly what I've done as the next step to my rehab program. It's been challenging at times but overall extremely positive for me!
I recommend it to everyone! Keeping our minds sharp with learning challenges is one of the best ways to fight!

I have also be on a new cocktail since the 1st of this year, the new TMC125 expanded access drug, the results have been amazing! This combined with the ritalin and I feel like I am really moving forward again!
Thanks again!


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