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Reged: 09/05/09
Posts: 23
Loc: Los Angeles
26 years AIDS survior
      #248078 - 10/19/09 10:56 PM

I had AIDS for many years now and was the lucky one's to surive... the clinical studies.... long term side effects... and the worst isolation. I'm 26 years old and i was dianosed in 1988 when i was five years old. My parents didn't know why i had a rash all over my body but after months in the emergency room... filing for medical... filing for other paper works.... waiting... waiting and the endless waiting... till finally someone calls your name... but you think your dilirous from the exhusting experience while in pain. Finally after a month, my parents was able to do all the paperwork needed to be done so i can be seen. After testing everyone noone tested positive. My parents tested negative, my twin sister tested negative...and there ME, a five year old child... asked if i had sex... used IV drugs... or other thing a child shouldn't of know and what it meant. Finally, after the doctor's staff look at years of my paper work, they stumble back, to my birth. I was 3 months premature... i was dying and they need to do something fast, so the doctors injected me unknowning with tainted blood. I was transfused at birth in 1983 and it wasn't a law. The first thing i remember was the medication and what they all did to me. First was the AZT, like Ny-QUil but clear with a pinch of yellow, i had to take three times a day. Everyday before i went to school, ate dinner, and shooked up at 2 am; just so i can take my meds. After a while i complained why do i have to take meds...and my parents explained, if i dont take it i will die and dont tell anyone. Years went by and as a child, I already knew that i might die really soon. AZT stopped working, the virus became resistant, and now there were no meds. I had to wait almost three to four years before, i started taking pills. i dont remember which order i took the meds but i remember taking all these. NRTI :Combivir, epivir, epzicom, retrovir, truvada, videx, viread, zerit, ziagen, sustiva and i dont think i took any off the other of not on the full list of NRTI. PI: Invirase, kaletra, norvir, prezista, reyataz, and vieracept. Integrase inhibitors: Isentress and the Fusion inhibitors is a IV injection 2 times a day leaving the injection site sore for 2-3 weeks. thats 2 times 21 days equaling 42 sores on my body at any giving time. Sadly i am resistant to all these medications. After struggaling to take these meds i had about a ten gallon size bag of pills left over i didn't take over 20 years. In 2006 i was dianosed with hep C with stage 2 liver damage and hopefully will began treatment as soon, as i have enough tcells to survive the hep c medications, which is a self inficted injection every week. Currently i have stabbing pains from my liver and a fatigue that puts me into a REM sleep mode from pure exhustion. Managing my time is like a ritual, thats not on the right time as long as i take 2 doses around the time they should be taken and now Balancing that with school, work and hanging out with friends... just burn me out and I cant do all of them at the same time, so i work around it. School isn't everyday, Work has to have a easy access to restrooms, and my friends can help me. I am not a GAY person.... I am a heterosexual Male that loves to bang hot girls... with perky tits and nice tight pussy... But finding girls is more work because once i explain the story, they just end up in tears. For decades i kept it a secret, and noone knew it, I never told anyone in elementary, middle school, high school, and thru college... untill one day all the faces i knew dissapeared.... and i was in a place where everyone was adults and not adolencent kids. I recently told my friend in middle school that i was HIV positive and told him like this "F YOU if you think i'm gay and it was a total accident at birth." He then started laughing and said "i already knew... i saw stuff lying around in your room." i was like shit i thought i hid all the edvidence...but then he suprized me... by saying "you know what, i'm glad you kept it a secret till recently because if you told me when i was younger, we probally wouldn't be friends now. I'm alot older and mature now and i understand why you did what you had to do, and thanks for telling me." he also stated that he recently went in to get tested for HIV and i was like how did that turn out and he replied, "If i tested positive, i probally would of killed myself" I was like " you know you can live up to my age and more." and the the rest of the evening we just talked about all the girls i turned down...because i couldn't explain it to them... because they were to young to understand what i had already knew at age five.

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Reged: 03/21/06
Posts: 581
Loc: South
Re: 26 years AIDS survior new
      #248099 - 10/20/09 10:02 PM

Hey Aaron, YOU SURVIVED! That's blessing!

Keep posting and keep living.

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Reged: 10/21/09
Posts: 31
Loc: Hawaii
Re: 26 years AIDS survior new
      #248109 - 10/21/09 08:17 PM

I was born in 1988... born HIV+. So we are both strong survivors, thankfully our generation is probably the first to be infected and to continue living strong healthy lives. It's pretty amazing...


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Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: 26 years AIDS survior new
      #248273 - 11/04/09 12:29 AM

Dear Aaron,

I am heartened to meet another long term survivor, I was diagnosed with HIV on Labor Day weekend 1984, so I too have had the virus for 25+ years. As you may know the test for the virus became available about the time I was tested positive by the Red Cross after I gave blood in Atlanta, Georgia.

We long term survivors have had a hard time of it. Until 1995, there were no effective treatments for HIV infection. I started on AZT in April 1994 and I clearly remember the feeling that I was full of ants.

Since 1994, I have been on many HIV drugs and have had many troubling side effects. Most notably anemia, pancreatitis, thrombocytopenia, and hepatic siderosis.

I was hospitalized with PCP in April 2004 at which time I was officially diagnosed with AIDS. My viral load soared to over 500K and remained that high until an effective drug regimen was started in late 2004.

In 2006, I was diagnosed with the initial stages of HIV related dementia, which is now called HIV Associated Neurological Disease ( HAND). My primary symptoms are depression, inapproiate behaviour, mania, anger, cognitive dysfunction and an inability to handle physical or emotional stress without my arms and legs "freeizng up".

From your post, I beleive that you have HAND. You are inappropriately angry and your syntax is confused. I see from your post that you are also depressed. Please do not let a psychologist attribute your problems to your situation. Your problem is chemical and no amount of talk therapy will help.

Once I was diagnosed with HAND, I sought the help of a competent psychiatrist who has helped me with meds to control my behavior, depression, and mania.

There should be no guilt about your condition. The virus, even at undectable levels enters the brain and slowly does its dirty work year on year. An undectable viral load means that there is less than 50 viral units per millileter of blood, not that the virus is gone from your system.

Please stop your sufferring and consult with a neurologist that is experienced with the effects of HIV on the brain. My neurologist, Dr. Elyse Singer, can help in this regard. She is at UCLA and her email is Shshould be able to find a competent AIDS neurologist for you.

Those people who say that HIV/AIDS is a manageble disease are not aware of the new clinical findings that long term HIV infection, even with effective control of the virus by meds, has very serious effects including early onset dementia (HAND), arthritis, and osteoporosis.

Good luck my friend,


My symptoms are so severe that I have had to retire on disability and my psychiatrist has recommended that I enter a home for people with dementia. I disagree with my doctor that I need to enter a "home", but I cannot handle the sensory input of being with groups of people such as at parties or concerts. The sensory input causes my body to shut down rendering me unable to walk. I use a power wheel chair to get around on long outings, such as to a public garden as the stress on my brain of walking long distances causes me to freeze up.

Life is a river.
Carpe diem.

Edited by ScotCharles (01/26/10 04:29 AM)

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