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Perpetual med failure yet healthy
#156770 - 07/03/05 01:15 AM
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I am a 37 y/o male who has lived with HIV for 12 years and AIDS for 9 of them. Last year I got my frst opportunistic infection, cryptosporidium. Othehrwise I have been pretty healthy.
I have taken all kinds of meds from AZT to T-20 to various study meds including Tipranavir and a CCR5 inhibitor. I have never been on a regimen that has raised my CD4 count nor lowered my viral load. At the present I have a CD4 of 3 and a VL of 150,000.
Meds have never done in my blood what they are reported to do for so many. I rarely, if ever, hear of people like myself who never achieve the coveted status of "undetectable", yet remain mostly healthy, active, and determined to live on.
Speak up if you are out there. Say hi!
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debtex
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Legend
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Reged: 03/21/05
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Posts: 846
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Hey hr, how are you??
so, sounds like you've been all over the place with medication, and its not taking you to where you and everyone else are trying to get it to. Have you had a genotype, or phenotype drawn?? Is sounds as though you may have some resistance to "something".
Sometimes, people are given a combination and one or two will work, but then #3 your resistant to, so it won't do what its supposed to do to your body. (I work in an hiv outpatient clinic). I see very mixed up geno/and pheno tests.
but it sounds in other words, before this infection, you have been doing farely well. and yes, I see this (and are very close with....I don't want to say my patients, because they are now my friends) all the time. You will probably bounce back every time. but you should first get a genotype done to see if you have "any" resistance. and it also shows what "strand" of hiv you have. (which detects complications with meds) although, I don't think i will ever understand "that"!!
Maybe you know this stuff, who knows, but I too have been poz for 12 yrs, and just learned this stuff when I began in the hospital 4 yrs ago. (although I didn't learn about it enough until maybe 2 yrs ago).
Please get back soon, hope all is well.
love and prayers,
deb
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spiritzone2
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Grand Master
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Reged: 06/24/05
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Posts: 166
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Loc: PORTLAND ROCKS !!
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HOWDY. I was sort of where you are. i had ZERO t-cells for 4 1/2 years. i started out with 400 in 1987 and they seemed to go down at a steady rate. My VL has bounced around and only in the past 2 years has been undetectable. i currently have 184 tcells and have been infected for 17 years. That just goes to show you how individual the virus is with people. there are so many factors. I used to use meth and smoke cigars. i don't do anything like that anymore. i use visualizations and psychodrama now and didn't even know what that was. i didn't used to be able to even say the word: dementia out loud without provoking the most intense terror. I now joke about it. There certainly has been a learning curve. I will say that i am glad i have AIDS because it's allowed me to change and be a better person. i would still be self-destructive and hurtful without it, i'm sad to say. i am grateful for my tribulations and i almost feel like i've been healed. Yes i've gone thru liver failure and had the pcp pneunominia 4 times and all that. Can't tell you how many pills i've swallowed in this 17 years, don't think i can count that high. Been clean & sobor for almost 3 years. I have fixed myself, finally and enjoy life and reaching out and helping others. I meditate, attend church, hike, bike, bungie-jump, FireWalk, Drum & drum circles, and many other things that i never did before. I have FUN. I live in poverty and have more FUN than i ever thought possible: i am content. i live simply--not into material things. About the med failure: yes i am on salvage therapy, i have taken everything except the T-20 and been involved in many medication studies. I HAVE NO REGRETS. I turn 50 this year, still don't act my age, and can run circles around most 30 year olds. Certainly blessed. You are a long-term surviror too, and the determination you speak of to live on says something about your drive and attitude. Would you not agree that ATTITUDE IS EVERYTHING ?? I think perhaps i will live forever. What is your thinking on that ?
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OUR FOCUS DETERMINES OUR REALITY.
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