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Author Topic: Long term Poz people  (Read 3416 times)

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Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Long term Poz people
« on: January 21, 2007, 11:24:24 PM »
Hey Everybody

I thought it might be good to get an idea of how many of us here have been poz for a long time. I know that many members here have been poz for 15 years or longer. I know that there are quite a few among us here at the Forums. It might give insight to some of our junior HIVers as to how we have lived (and who) with the virus a long time.

Me first. I was tested poz in 1985 though was likely infected in 1981 while living in NYC. Those were scary first days of the virus when we did't know what was happening but it was spreading quickly and destructively. I've also somehow been blessed to have never been ill and am termed a Long Term Non Progressor (LTNP).

Who's next ?

Cheers
Paul

Offline GSOgymrat

  • Member
  • Posts: 5,047
  • HIV+ since 1993. INTJ
Re: Long term Poz people
« Reply #1 on: January 22, 2007, 12:42:41 AM »
I was infected 14 years ago. Unfortunately I am not a LTNP.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Long term Poz people
« Reply #2 on: January 22, 2007, 12:52:21 AM »
I was infected at least 15 years ago, perhaps more.  Unfortunately I am not a LTNP, but I have progressed over the long term!
"Iíve slept with enough men to know that Iím not gay"

Offline Seven

  • Member
  • Posts: 108
Re: Long term Poz people
« Reply #3 on: January 22, 2007, 12:57:53 AM »
I was infected 12 years ago, and well shall I say it...yes I have you know what  ;D

Offline Seven

  • Member
  • Posts: 108
Re: Long term Poz people
« Reply #4 on: January 22, 2007, 12:59:04 AM »
I was actually start this post this morning, but when I got up and read the post from lastnight...  :-\ I changed my mind.

Offline siongi

  • Member
  • Posts: 42
Re: Long term Poz people
« Reply #5 on: January 22, 2007, 01:08:25 AM »
I was diagonised with HIV three years ago. By that time i had been taken ill of TB twice in about a year.Then my Doctor and i decided to have a test which turned out to be positive. My CD4 Cells were only 7.  I cant tell when i got infected for sure but i think it must have been around the year 2000.

Offline J.R.E.

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  • Posts: 7,259
  • Joined Dec-2003 Living positive, since 1985.
Re: Long term Poz people
« Reply #6 on: January 22, 2007, 02:56:14 AM »
Hello Paul,

Became infected around the 4th Of July weekend in 1985. tested positive in October. Did not begin meds until until October of 2003. But should have begun probably by late 2001.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline RapidRod

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  • Posts: 15,288
Re: Long term Poz people
« Reply #7 on: January 22, 2007, 05:48:21 AM »
Was diagnosed positive April 1984. Was a LTNP until 2005.

Offline poet

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  • Poet living and working in Central Maine
Re: Long term Poz people
« Reply #8 on: January 22, 2007, 06:26:16 AM »
Infected, the Summer of 1984.  Lab work shows hiv exposure in 1986.  Meds?  Can't remember when I started.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline dtwpuck

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  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: Long term Poz people
« Reply #9 on: January 22, 2007, 06:37:12 AM »
been poz since 1996... diagnosed on jan 29 1997 .... whew the ten year anniversary is coming
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline bear60

  • Member
  • Posts: 4,104
Re: Long term Poz people
« Reply #10 on: January 22, 2007, 08:53:02 AM »
Tested HIV positive in 1989 but was probably infected a few years earlier. I am a LTNP... still.  Update on that: I am waiting for my doctors office to coordinate the blood drawing to participate in the study going on in Boston.
« Last Edit: January 22, 2007, 11:50:08 AM by bear60 »
Poz Bear Type in Philadelphia

Offline aztecan

  • Member
  • Posts: 5,414
  • 29 years positive, 57 years a pain in the butt
Re: Long term Poz people
« Reply #11 on: January 22, 2007, 09:01:13 AM »
I tested positive in 1985 - July I think.

Probably infected in early summer of 1980.

Thought I was a LTNP until January 1996, when things started going down the toilet.

This May, I will have been on the same regimen 11 years. Cross your fingers and hope things don't go south before then.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Amosboy

  • Member
  • Posts: 156
  • Music is the panacea.
Re: Long term Poz people
« Reply #12 on: January 22, 2007, 09:31:39 AM »
A proud member of the long-term poz club:  Initial diagnosis came on January 6, 1986 but I was infected in September 1985.  I didn't see a doctor for 10 years:  major denial.  First CD4 count was 242 and VL was 17,000.  I've seen a moderate increase in CD4 counts (usually it's around 450-600) and my VL has remained undectectable since starting meds in 1996.  Want to know more?  Read my bio and PM me to ask any questions.  I'm not the shy and bashful type  ;)

Brooks
"Love isn't love unless it's not painfully absurb."

-Charlotte Martin

Offline redhotmuslbear

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  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Long term Poz people
« Reply #13 on: January 22, 2007, 09:52:44 AM »
Based on medical and sexual history, I got my bugs around 1983-84.  Lots of MDMA and unprotected sex among a circle of friends in Houston who were dwindling before me.  "Denial is a treatment option," I have often said.  Had a positive ELISA test in 1994 that I didn't find out about til 1999 and was formally diagnosed 5/98 when I contracted Hep A.  Had a miraculous response to Crix+AZT+3tc then:  VL from 680K to <400 in four weeks.  

My primary doctor back then suggested my going off meds a couple times, but I balked at a complete cutoff, opting instead for "crazy" approaches like Ziagen monotherapy for two years til the bugs barely broke through.  I finally took the leap in October 2005 in order to scrren into a meds study at NIH.  Wound up on the placebo arm, and after six months my CD4s remained strong (800s, high-30s%) while my VL had gone to 4,000 then dropped back to 76.  Turned out I have an HLA epitope [genetic mutation affecting the immune system] "of interest," and I agreed to stay off meds indefinitely.  When my 52 weeks numbers continued in the fierce and fabulous range (VL 436), I was eager to enroll in the Elite Controllers study -- it's kinda hot having whole teams of people in another city after my body!  Just got 67 week numbers back; and while they're great (VL 556, CD4 666/37%), I feel 'disconnected' from others HIVers somehow.... thoughts of Charlton Heston in "The Omega Man" or being left in The End with Cher and the cockroaches!  I also can't help but wonder how many friends I may have lost to the meds and mutating virus who might have had a genetic leg up unknown to them.

For having something like my genetic freak status to be happy about (my Xmen name is "The Funk"), it sure feels lonely.

David near DC
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline AlanBama

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  • Posts: 3,644
  • Alabama: the 'other' 3rd World Country!
Re: Long term Poz people
« Reply #14 on: January 22, 2007, 10:28:19 AM »
I was probably infected in 1986, my first poz test was March 1987.   I went on AZT monotherapy in 1988...and downhill from there.    The protease drugs saved my life in 1996.

I've had just about every O.I. there is, and a few you never heard of!   My "full blown AIDS" diagnosis (as they called it then) occurred in Feb 1991 with MAC of the liver.   I was given a prognosis of 6 months.

It's been a long six months........
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline ademas

  • Member
  • Posts: 1,151
Re: Long term Poz people
« Reply #15 on: January 22, 2007, 10:52:28 AM »
Diagnosed with AIDS right off the bat in early '94, and most likely infected in late '82 early '83 by my first boyfriend. 
I long-suspected I was positive, so it was no surprise.  Both my exes passed in '93.
I started on the Crixivan trials in '94, and was one of the fortunate ones who received the actual meds (no placebos).
Officially, it's only been 13 years--but it sure feels like 25.

Offline Christine

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  • Posts: 1,069
Re: Long term Poz people
« Reply #16 on: January 22, 2007, 10:59:59 AM »
Infected late '91 or early '92, diagnosed in '93. T-cells dropped down below 200 the first few months after diagnosis, and have been below 200 since. Pretty healthy until 2001 when I was hospitalized for a bacterial infection for one month, two weeks in the ICU which I don't remember.

Since then, pretty good until Oct '05, when it has been one OI after another.

Never been undetectable, and resistant to everything except Viread all with strict adherence, eating well, exercise, no alcohol, no recreational drugs. Participated in four clinical trials- crixivan, t-20 (fuzeon), tmc-114, and presently GS-9137.

Still hanging on though...

Christine

edited for typo
« Last Edit: January 22, 2007, 11:03:11 AM by Christine »
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline purpledragonfly

  • Member
  • Posts: 149
Re: Long term Poz people
« Reply #17 on: January 22, 2007, 11:08:36 AM »
I found out i was poz in 1988, i am sure i was infected in the fall of 87. Was fine till the winter of 96, had to come home to Indiana to get sick lol. My cd4 count was 29 in March of 97. I am happy to say i am doing very good with the hiv, now if i could get the COPD to settle down. My new couts are cd4 743 and vload undetectible.
 To the ones that are just finding out they are poz. I can tell you that a positive attitude will take you a long way in life, that and to find and listen to a good Dr.

I plan to be around for another 19 or 20 yrs. I have 9 grandkids i want to watch grow up.
 

Wendy

Dan J.

  • Guest
Re: Long term Poz people
« Reply #18 on: January 22, 2007, 11:17:27 AM »
I was diagnosed HIV+ in May 1986.

Dan J.

Offline Miss Philicia

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  • Posts: 24,424
  • celebrity poster, faker & poser
Re: Long term Poz people
« Reply #19 on: January 22, 2007, 11:35:38 AM »
.
"Iíve slept with enough men to know that Iím not gay"

Offline Alain

  • Member
  • Posts: 680
  • I am.
Re: Long term Poz people
« Reply #20 on: January 22, 2007, 11:45:54 AM »
Diagnosed July 13, 1987. I am not a LTNP. 

Offline bravebuddharich

  • Member
  • Posts: 179
Re: Long term Poz people
« Reply #21 on: January 22, 2007, 11:50:30 AM »
I've been poz for 20 years. I was basically fine until 5 years ago, then I started having problems, especially last year at this time, when I almost died. BUT I've made a remarkable comeback, finally found the right regimen, which is working for now.

I've noticed, could be wrong, but many longterm survivors went into denial, which I think saved our lives. I remember that the poz men who I knew in the late 80's, early 90's, who have died, were all the ones who took the medications that were available then. The ones who have survived didn't. Nobody's "fault", IMO, it just took awhile before they could develop better medications, with less toxicity. It's also possible that some got a more virulent strain than others...

Offline marco23

  • Member
  • Posts: 392
Re: Long term Poz people
« Reply #22 on: January 22, 2007, 11:52:08 AM »
I was diagnosed in 93, was diagnosed as having AIDS in 2003 and have been on meds since!
Cheers to everyone on this Forum!!  :) Here's to a long, happy and beautiful life we have ahead of us!!   :-*
Don't hide your hurt, pain and feelings inside..for they will harden your heart.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Long term Poz people
« Reply #23 on: January 22, 2007, 11:59:10 AM »
Quote from: bravebuddharich
I've noticed, could be wrong, but many longterm survivors went into denial, which I think saved our lives. I remember that the poz men who I knew in the late 80's, early 90's, who have died, were all the ones who took the medications that were available then. The ones who have survived didn't. Nobody's "fault", IMO, it just took awhile before they could develop better medications, with less toxicity. It's also possible that some got a more virulent strain than others...

Is that the case, or did this certain group stay in denial simply because their HIV didn't progress to where they could no longer be in denial.  I think that's more the case, though I'd need to see from this group how regular their medical care was while NOT on HIV medication.  Certainly there's a balanced group that WERE on HIV meds the entire time, like myself, that are still here today and in fact may have done remarkable better than those that were in denial.

I'm not sure that your comment is that spot on.
"Iíve slept with enough men to know that Iím not gay"

Offline ademas

  • Member
  • Posts: 1,151
Re: Long term Poz people
« Reply #24 on: January 22, 2007, 12:23:21 PM »

I've noticed, could be wrong, but many longterm survivors went into denial, which I think saved our lives. I remember that the poz men who I knew in the late 80's, early 90's, who have died, were all the ones who took the medications that were available then. The ones who have survived didn't. Nobody's "fault", IMO, it just took awhile before they could develop better medications, with less toxicity. It's also possible that some got a more virulent strain than others...

You nailed my story. 
As I said, I long-suspected I was positive, but I just didn't want to take the test.  I figured as long as I felt good and was taking care of myself, why would I want to know?  In retrospect, it was definitely denial.
And...as it turned out...the fact that I was AZT-naive qualified me for the Crixivan trial that I started immediately after diagnosis in '94.  I wouldn't have qualified for the trial had I not been AZT-naive.

Offline jack

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  • fomerly the loser known as Jake
Re: Long term Poz people
« Reply #25 on: January 22, 2007, 12:28:35 PM »
18 years.

Offline redhotmuslbear

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  • A genuine certified freak of nature, and a hot one
Re: Long term Poz people
« Reply #26 on: January 22, 2007, 12:38:54 PM »
Is that the case, or did this certain group stay in denial simply because their HIV didn't progress to where they could no longer be in denial.  I think that's more the case, though I'd need to see from this group how regular their medical care was while NOT on HIV medication.  Certainly there's a balanced group that WERE on HIV meds the entire time, like myself, that are still here today and in fact may have done remarkable better than those that were in denial.  I'm not sure that your comment is that spot on.

You're right on about being able to stay in denial because the infection had not reached a state of crisis.

Up until December 1994 I had a spinal fluid shunt for allowing excess fluid from inside my brain to run off to my abdomen.  Having an HIV diagnosis would have truly complicated any needed surgery.  During 1983 and 1984 while in college, doing drugs with an abusive cokehead lover and having sex with countless men in a weekend, I had inexplicable bouts with swollen lymph nodes and night sweats--well, the college docs didn't have a clue, but I remembered similar experiences among friends who quickly developed OIs and died.  In November 1984 I required surgery, and when the ELISA test came out soon after I dreaded the thought of taking it -- like some a$$hole neurosurgeon is going to want to cut my head open again if I've got HIV!  I came out as a Gay man shortly after that surgery, but I was not out to my physicians until 1990 when I got my first Gay doc.  Still, that doctor never asked about my HIV status or suggested testing, as I was in a year-old drippy-sweet, sexually-exclusive relationship at the time.  I saw dozens of friends test positive, pop the pills, and die anyway during that time.  However, when I presented with Hep A in May 1998 (the first of five co-workers made ill by a food handler) he said that he would be 'irresponsible' to not test me for exposure to HIV... and I was resigned to what the result would be as soon as he drew the blood.  In fact, when his associate called me sobbing with the results I was prepared to face the news head-on and deal with HIV, at last.

I mentioned a positive ELISA test in 1994, too.  Between August and December 1994 I required five additional brain surgeries, and during the last one the surgeon cut himself.  An HIV test was ordered on me by the surgeon whom I despised and had no contact with for five years, yet the results never got to my primary doc.  Had I known four years earlier, it's difficult to say what I would have done or how my life would be different.  Surely, I would have grasped for what meds were available at the time and my relationship would have crumbled sooner.  Still, I don't regret any step along the way, as I am at peace with where I am now.
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline SirPrize

  • Member
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  • SirPrize!
Re: Long term Poz people
« Reply #27 on: January 22, 2007, 02:24:14 PM »
Probable infection sometime between '81 and '83.  Didn't get tested until early '91 and was told at that time to "Get your affairs in order" and was started on AZT monotherapy.  Thank God that I was not able to tolerate it, so went meds free until '94 and began Videx monotherapy.  Again, problems with the Pancreas and kidney stones that resulted in a meds free life until late '96 when I began the regimen of Zerit and Epivir.  Added Sustiva in 2000 and officially began the "cocktail."

Last med change was mid 2006 where I dropped the d4t and 3tc and added Truvada.  I've never had any of the OI's that accompany the disease and the T-Cells have been between 200 and 350 except for a blip in '99 to 189.  Not among those fortunate to wear the label of LTNP.
Due to current economic conditions, the light at the end of the tunnel has been temporarily turned off!

Offline gemini20

  • Member
  • Posts: 262
Re: Long term Poz people
« Reply #28 on: January 22, 2007, 02:36:55 PM »
I was infected in June 1991 (27th to be specifc!) and tested positive three months later in September so am now into year 16 of living with HIV.

Don't qualify as a LTNP but have only been on meds for a total of 22 months in these past sixteen years. Currently into month 15 of a treatment break, stopped all medications due to lack of compliance - I still can't get my head around taking pills when I'm feeling well!

Due back at doctors on 5th Feb for latest numbers, hopefully I can continue to remain off meds.

Emma



Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: Long term Poz people
« Reply #29 on: January 22, 2007, 04:43:54 PM »
Good morning from Australia

It's great to read so many stories of survival from our Forums family. Stories of longevity and triumph over this dreaded virus. Medications have been a life saver, literally, for many. With the advent of new, more effective and lower cost medications hopefully millions more people around the globe will also have a better outcome. One day we will also, I hope and pray have a vaccine or cure for HIV/AIDS.

Thanks everyone for sharing your stories !
Paul

Offline Nico

  • Member
  • Posts: 262
Re: Long term Poz people
« Reply #30 on: January 22, 2007, 08:38:00 PM »
Got the virus 12/16/89 converted 1/25/90.  I stayed off meds until PCP hit me in 2001.  Just thankful to be alive and have people like you to share my life with.

Cheers.
Roger 
Poz since 1990.

 


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