Neuro-AIDS

[BigDaneDogs]

I am in my 18th year of this "fun and festive" event in my life.  I t-cells are at 200 something and my vl = 318K.  I have in the past had a vl = "well into the millions" at a time when I was not on meds.  I have HCV as a co-infection.  They are looking at the possibility of Neuro-AIDS as a contributor to my loss of basic functionality.  Has anyone delt with this before.  This is certainly new turf for me and I'm not sure what is going on or what to expect.  Thanks for any help/advice you might be able to give me. 

[bear60]

Hi
I dont know anything about NEURO AIDS.  But I can welcome you and hope you find an answer.
Is this what your doc calls it...NEURO AIDS??


Joel

[leatherman]

I t-cells are at 200 something and my vl = 318K

out of curiosity, are you on any medications right now? You mention having a high VL when "not on meds" but your description still lists a very high VL.

[wolfter]

Nuero AIDS is a single illness or group of illnesses that causes damage to the CNS and/or brain.  I first heard the term 2 years when diagnosed with crytococcal meningitis.  I'd certainly verify with your doctor that they tested for possible nuerological illnesses before just "chalking it up" to Nuero AIDS.  My cognitive decline was gradual and my previous ID doctor assured me this was just the progression of long term HIV.  

Best of luck.
Greg

[aztecan]

I have seen this a lot more frequently recently, but usually among those who are not on ARV therapy.

However, that said, it is certainly an issue and, with CD4s in the range you describe, it certainly can be a possibility.

I am presuming your CD4s are stable, but low, and, if that is the case, has your doctor mentioned whether this is a result of living with a co-infection?

I have seen this happen and I have also seen the mental decline that is often seen in neuro-AIDS.

I have no clue what the prognosis is for these types of things, but I do know that higher CD4s have been beneficial to some I have known.

Have you considered HCV treatment? There is some groundbreaking work being done there that is expected to hit the public this summer, so that may be an option for you.

If you could conquer the co-infection, it may help.

I am, of course, no doctor. But these are among the things I have heard discussed by doctors in cases like this.

Oh, and by the way, welcome. Glad you are here. Please let us hear more from you.

HUGS,

Mark

[BigDaneDogs]

Thanks to those of you who have offered your opinion/suggestions.  I am not currently on meds as I got fired from my job (3 guesses why) and am in the process of getting on the state med plan.  They are going to put me on Truvada, which I have taken before, and Insentress (that's a new one for me).  I chose the Insentress because it has no food constraints and with my declining ability to remeber jack crap, it will be easier to do this combination. 

This all started about the time my t-cell = 100 and my vl = "well into the millions" aka 2007.  It has progressively gotten worse over the years.  My t-cells have ranged from a low of 100 to a high of 1050.My docs order of treatment as of 04/18/2011 is 1 - the brain, 2 - AIDS, 3 - HCV.  My particular doctor is the Chief of Staff at the AIDS clinic I go to so I have confidence in his knowledge.  My last doc I basically told to go jump in a lake because he refused to acknowledge the mental aspects of what was going on in my life.  I have a pending SSD application I hope to have a result from sometime in May.  This is my first run at SSD because it's not been necessary until now.