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Author Topic: WHAT IS A LONG TERM SURVIVOR???  (Read 7772 times)

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Offline MASTERMAT

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WHAT IS A LONG TERM SURVIVOR???
« on: February 02, 2012, 11:08:08 AM »
WHAT IS A LONG TERM SURVIVOR.???. IS IT SOME ONE INFECTED FOR TEN YRS OR TWENTY OR THIRTY YEARS...SINCE HIV TAKE ABOUT 20 YRS TO DO IT THING IN MOST CASSES.... I SUGEST A LONG TERM SURVIVOR IS TWENTY YRS OF HAVING HIV.. AND A VERY LONG TERM SURVIVOR IS THIRTY YRS OR MORE .. LIKE ME SICK IN 79 DIAGNOSED IN 83... WHAT DO U THINK.???... AND WHAT DO U THINK WHEN SOME ONE HAS HAD HIV FOR 6 YRS CLAIMING THEY ARE A LONG TERM SURVIVOR.... ALSO I DISLIKE PEOPLE WHO CLAIM THAT HAVING HIV OR CANCER WAS THE BEST THING THAT HAPPENED TO THEM... IT WAS THE WORST THING THAT HAPPENED TO ME BUT I AM TRYING TO STILL HAVE A GOOD LIFE... WHAT DO U THINK???

Offline denb45

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #1 on: February 02, 2012, 11:12:27 AM »
READ THIS: http://forums.poz.com/index.php?topic=11166.0

and you might wanna turn off your caps before you post  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline leatherman

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #2 on: February 02, 2012, 11:36:06 AM »
Welcome! :D

WHAT IS A LONG TERM SURVIVOR.???. IS IT SOME ONE INFECTED FOR TEN YRS OR TWENTY OR THIRTY YEARS
for definition purposes at this site, a LTS is described as someone diagnosed before the advent of HAART (triple therapy was introduced in 1996)

SINCE HIV TAKE ABOUT 20 YRS TO DO IT THING IN MOST CASSES
rather than 2 decades, usually HIV takes 10 year or less before destroying enough of a person's immune system to result in AIDS or death

I DISLIKE PEOPLE WHO CLAIM THAT HAVING HIV OR CANCER WAS THE BEST THING THAT HAPPENED TO THEM... IT WAS THE WORST THING THAT HAPPENED TO ME
I understand and I have a hard time with that too. However, I think those people actually mean that HIV, rather than another illness, an accident or something else, caused them to re-evaluate their lives, and try to improve themselves and their situation - and that IS a good thing.

However, you wouldn't catch me saying that HIV or the death of my partners has been a good thing, even if those situations have made me appreciate my life and do more with my life. ;)
« Last Edit: February 02, 2012, 11:39:27 AM by leatherman »
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Theyer

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #3 on: February 02, 2012, 03:07:42 PM »
Welcome Mastermat.

What do I think ?-- well I am content with the definition we have here ,to have received a HIV diagnosis before HAART is a differant experience to receiving one Post.

Like you I am not enamoured by the statement that HIV is the best thing to happen , however it does make one think what was there life  like before there diagnosis. From my experience these individuals don,t keep you waiting long there quick to tell you and in a few cases I see why they make the Statement now.Pre 1996 though I thought it was denialist hogwash , mixed in with with hourly joints.

Well I look forward to hearing more about you ,take care
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline wolfter

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #4 on: February 03, 2012, 09:15:32 AM »
Welcome to the forums.  I'm too young to be considered a very long term survivor in a mere 4 years.   ;D  20 years to develop AIDS?  I thought the average was closer to 6 years before treatments became available.  Unless I contracted it in gradeschool.  I knew that little Mfer I played with didn't look clean. :o

Again, welcome. 

Best wishes

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Miss Philicia

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #5 on: February 03, 2012, 10:19:56 AM »
Even if I go by my oldest possible infection I developed AIDS-defining numbers (<200 cd4) within five years.

ps: welcome to the forums, Master!
"Iíve slept with enough men to know that Iím not gay"

Offline denb45

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #6 on: February 03, 2012, 10:27:37 AM »
Even if I go by my oldest possible infection I developed AIDS-defining numbers (<200 cd4) within five years.

ps: welcome to the forums, Master!

Took me a bout w/ PCP &  AIDS-defining numbers below (<200 cd4) within 8 yrs.
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline wolfter

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #7 on: February 03, 2012, 10:37:52 AM »
I think around 86, that I was told the average was around 6 years and was also told that it could be longer and I could possibly live to be 30.  By the time I turned 27, I had me the AIDS.  But it didn't have me :o  Denialism was an important aspect of my treatment back then.   ;D  I refused to die!

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline denb45

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #8 on: February 03, 2012, 10:44:31 AM »
I think around 86, that I was told the average was around 6 years and was also told that it could be longer and I could possibly live to be 30.  By the time I turned 27, I had me the AIDS.  But it didn't have me :o  Denialism was an important aspect of my treatment back then.   ;D  I refused to die!

Wolfie

That all depends on how healthy you were when you DX'ed back then, most DIED that weren't very healthy, and all the Drugs in the world
didn't help, so it's safe to say, that if you were healthy
back then, you are a LTS, before "96"
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline lforsyth

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #9 on: February 04, 2012, 06:02:50 PM »
I tested positive in 1986 when anonymous testing was available. So many friends were put out on the streets back then.
Tested POZ in 1986, knew there was something wrong in 1985. 04/2010 CD4: 975 Viral Load undetectable. Prezista, Norvir, Truvada, Acyclovir, Plavix, Lisinopril, Metoprolol and a bedtime snack of Lipitor (YUM)

Offline LongTimeSurvivor

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #10 on: February 11, 2012, 08:38:56 PM »
A small feral animal that is hard to kill... ::)

Jus' kiddin'...

Have a strange sense of humor...most of my friends just shake their heads and mumble something.
Of course it's important. It's an email...

Offline leatherman

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #11 on: February 12, 2012, 11:35:23 PM »
I tested positive in 1986 when anonymous testing was available. So many friends were put out on the streets back then.
anonymous testing has always been done and is still is. ;)

if you test negative, no one ever knows your name at the testing location or at the health dpt (there's no need)

however, in most states (if not all) when you test positive, your name is reported to the local health dpt. This name-based tracking helps to notify past partners who might have been exposed so that they can get tested, and allows your state to receive proper health care funding based on how many HIV positive citizens live in that state.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline LiveWithIt

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #12 on: February 14, 2012, 10:23:01 PM »
I've had if for 17 years, but I don't know how long before that I was infected.  I remember telling someone back when I was 13 years poz, he was HIV poz too and told me that it was a long time.
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline hudstar

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #13 on: February 15, 2012, 10:15:59 AM »
I guess anyone that remembers the CD "Red Hot and Blue"
diagnosed 1988
POZ personals - hudster

Offline hudstar

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #14 on: February 15, 2012, 10:33:09 AM »
WHAT IS A LONG TERM SURVIVOR.???. IS IT SOME ONE INFECTED FOR TEN YRS OR TWENTY OR THIRTY .... ALSO I DISLIKE PEOPLE WHO CLAIM THAT HAVING HIV OR CANCER WAS THE BEST THING THAT HAPPENED TO THEM... IT WAS THE WORST THING THAT HAPPENED TO ME BUT I AM TRYING TO STILL HAVE A GOOD LIFE... WHAT DO U THINK???
for some people it made them get more out of life, it motivated them. For me my life was already happening and being diagnosed knocked me for a six. It became a part of me in the end because being poz was what defined my young adulthood and it grew with me as I moved on/around/travelled so i think my life would have gone the same way but without the stress and heartache associated with stigma and some pretty awful social reactions. I think today the only issue I have about the whole thing is the silence associated with a part of history that impacted so many gay peoples life (and family and friends)'. We all still remember those aweful early years.
diagnosed 1988
POZ personals - hudster

Offline leatherman

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #15 on: February 15, 2012, 03:03:37 PM »
I guess anyone that remembers the CD "Red Hot and Blue"
I still have that CD.  ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline jahcureme

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #16 on: February 29, 2012, 01:09:36 PM »
poz since 89..i would call that long term..in denial the first 5yrs and the disease told me too cd4 got to 10..well we all know what that means ..I hated the thought of what was happening..but then I decided to live..And refused to believe that this was my death sentence.Im living with HIV it is not living in me I've been undetected for 6 yrs now. I guess once you face it..you live life as if everyday is your last. So you take care of yourself..physically and mentally and most important ENJOY!!! I have faith that I am a survivor...And today I'm thankful for what I call my gift and curse. I know it changed me !!
ONLY GOD CAN JUDGE ME ! So don't waste ya time!

Offline pointer165

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #17 on: March 15, 2012, 09:50:33 PM »
I am a LTS , was diagnosed in 1988.I was a Pharmacist and decided by myself to hold off on any meds until the look in the doctor's faces would be grueling.I never looked at any blood counts because I knew if I felt OK I was OK.Now I do it for the doctors basically, my Tcell count has never changed and stayed at 300 for all that time and non detectable viral counts. I did hold off on meds until about 1994 and my body is one unusual being.It does not take well to most meds and I went though many till I got the right ones.My regimen now is Travuda,DDI & Viramune.Have been on this regimen for about 10 years .I do take a "drug holiday" every year during a Summer month and do it just to give my body a rest from all these chemicals....been reading on here about Osteoporosis from Truvada, which my oncologist diagnosed me on my last clean Pet Scan several months ago but he said it was very mild and not to worry. Now having heart problems and had a ablatia..so going through that now..that's what it means to be a LTS! fighting each and every battle that comes along.

Cheers...
Tony(NYC)
Guamanian

Offline Miss Philicia

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #18 on: March 18, 2012, 07:33:04 PM »
that's very odd that you're doctor has you on three NRTI's and a NNRTI instead of just two NRTI's -- do you know why he's doing this? Specifically the Videx (ddi) which is an old 90's-era medication and can commonly cause peripheral neuropathy, among other things.
"Iíve slept with enough men to know that Iím not gay"

Offline deibster

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #19 on: March 19, 2012, 01:51:18 PM »
Hi, it's been about 3 years now that the Feds require the states to keep hiv statistics by name, not just by id-number, in orer to receive federal health care funds (medicare, medicaid). My state, MA insists that this list with names is kept on a PC, in a locked room, with no internet connection so it is impossible for someone to hack into the data.

Part of the reason for the name list was so that people weren't counted twice in different states. We have a lot of people here who winter in warm states & obviously they are only supposed to be receiving 'public benefits,' ADAP etc. in one state. I don't know how they check on this double-dipping if they don't give the names to the feds. I assume they use a code with my initials & date of birth. I know our code numbers at my ASO start with the first 3 letters of my mom's first name, and then my date of birth. The needle exchange office in town uses this same code, so I guess it is statewide. Maybe it's nationwide. Has anyone else had to give their mom's first name when registering at their ASO?

I don't think the health department can notify past partners that you have hiv; that's still confidential. They can notify them that they should see their doctor, that a past partner has reported a disease. Hugs from Provincetown, deibster ;)
« Last Edit: March 19, 2012, 02:02:12 PM by deibster »
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline leatherman

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #20 on: March 19, 2012, 04:26:50 PM »
**moved my reply to Deibster to a more appropriate thread  ;)
« Last Edit: March 19, 2012, 04:31:16 PM by leatherman »
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline hudstar

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #21 on: May 19, 2012, 06:15:55 AM »
Anyone that purchased the RED HOT AND BLUE CD..........LOL  :)  Here in Australia we term anyone long term as those of us diagnosed or seroconverted pre HAART
diagnosed 1988
POZ personals - hudster

Offline Miss Philicia

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #22 on: May 19, 2012, 09:31:03 AM »
Here in Australia we term anyone long term as those of us diagnosed or seroconverted pre HAART

That's the policy we agreed to when this portion of the forums was first set up.
"Iíve slept with enough men to know that Iím not gay"

Offline hudstar

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #23 on: May 19, 2012, 11:43:30 AM »
good, I think that was a fair level to identify what long term is. I just joined my first group of pre HAART poz guys and the dynamics is far different from the group I joined a few years back that was for all poz guys. Not that any one group is worse off than the other but the dynamics and experiences are very different. Actually it took me 24 years to reach the stage I felt that I needed to go to such a specific group. Even after one session with this group so many things seem to be more in perspective - I never achieved any of that with the other group so it is a definate that long term is kind of a specialty area so to speak.
diagnosed 1988
POZ personals - hudster

Offline Miss Philicia

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #24 on: May 19, 2012, 11:51:32 AM »
good, I think that was a fair level to identify what long term is. I just joined my first group of pre HAART poz guys and the dynamics is far different from the group I joined a few years back that was for all poz guys. Not that any one group is worse off than the other but the dynamics and experiences are very different. Actually it took me 24 years to reach the stage I felt that I needed to go to such a specific group. Even after one session with this group so many things seem to be more in perspective - I never achieved any of that with the other group so it is a definate that long term is kind of a specialty area so to speak.

Interesting you should say this. I've been a member of a local LTS-only support group for the past six years, and I agree that they dynamics are more useful to me than previous groups. Our group is small though, and during a 12-month period we had three members pass away, which is obviously distressing. Two were from suicides and this is an issue that does not get addressed enough in official AIDS death stats IMO.
"Iíve slept with enough men to know that Iím not gay"

Offline amaphot

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #25 on: May 31, 2012, 08:33:40 PM »
I tested HIV+ in 1988 after my partner died.  I had no symptoms but felt the need to get some since of bearing.  Although I began AZT therapy in 1989, I was asymptomatic with a 400+ CD4 count until 1995.  At that time I began to experience a CD4 drop and the only HIV possible illness was Thrush.  I did not begin medications until then when PI's first became available.  My whole rational was not to begin medcations until I absolutely needed them for fear of developing resistance until it was absolutely necessary.  I think the pre 1996 era probably accurately reflects a whole generation of patients who gradually were able to adapt to emerging therapies and benefit from them.

We often are those lucky enough to have the chance to either have been asymptomatic or else survived earlier episodes.

Offline mlumpkins

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #26 on: June 09, 2012, 12:02:15 PM »
God willing I will b 36 in september I been poz for 18 years wit no meds..my dr tells me im wat u might call an elite controller/ non progressor ..i feel truly blessed to have been afforded the opportunity to raise my 3 sons all neg 18,17,14.. I  havent always lived life as I should but I do my best...my viral load is under 20 undetectable cd4 961 my dr sayd I got a better chance of getting shot by a stray bullet than dying from this disease anytime soon..
        i am a long term survivor..             I am blessed n highly favored

Offline bear60

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #27 on: June 13, 2012, 01:12:37 PM »
Hi Lumpy
Being a long time survivor isnt always a bed of roses.  Most have been thru hell to get to where they are today.
 Elite controllers can loose cd4 count just like any other pozzie.  I am an elite controller and after 23 years of testing, my CD4 counts are starting to slip. Down to 350 from 800 plus.
added: Oh, did I say I am 68 years old....and feeling pretty good.
« Last Edit: June 14, 2012, 01:08:51 PM by bear60 »
Poz Bear Type in Philadelphia

Offline Bemysnugglemate

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #28 on: June 14, 2012, 02:26:42 PM »
I just found this website...   
I guess I would be considered a long term survivor.   I tested positive on 8-2-96. But at NO time have I ever had a viral load.  Not even today....  I was told I was a non progress-or.  I do have neuropathy (spelled incorrectly for sure lol).  I have Never been on any HIV medications nor do I plan on ever going on any. 
I do feel blessed that one of the many doctors I have seen has stated that I am a very rare case.
   I was curious and was searching on this site but could not find anyone else like myself here.  I would like to see if anyone else is like I am.  15+ yrs. No viral load and never have been put of any hiv medications. :)

Offline Ann

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #29 on: June 15, 2012, 10:44:03 AM »
Hi Snuggle, welcome to the forum.

We do have a few LTNPs around here, but I can't think of any names off the top of my head aside from Bear60 (aka Joel, who also posts here in the LTS forum).

There's a LTNP website you may be interested in - the Zephyr Foundation. It was started by a LTNP woman who used to post here, but she hasn't been around here in ages. Her website also has forums.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Bemysnugglemate

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #30 on: June 15, 2012, 01:45:10 PM »
Thank you Ann and Leatherman for responding,

     I actually have many unanswered questions from the dr's that have treated me.  I have always been borderlined diabetic.  I was testing daily and it was always high. Yet when I would go and have that test that gives you an average over 3 months it always came back low.  At this point they (Dr's) believe that they can not use that test to see if I am a diabetic being that my blood does not react how it should to the test.
  I am also a Medical Marijuana Patient and use it to help control many other issues.  I was on Marinol for about 3 yrs in the very beginning but it just didn't offer the relief I needed.  I have learned a lot over the years and firmly believe that Tinctures can actually help many.
  I will check out the other site as well and see if I can find anyone else like myself. I want to see if what the doctor said (I was 1 of only 5 in the world like myself. and only 1 Dr in SF treated patients like me).

   I always knew I was unique.    ;)

Happy June Everyone.

Offline Bemysnugglemate

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #31 on: June 15, 2012, 02:43:17 PM »
Hi Ann,
   I seemed to not be able yet to figure out how to pm.   but I wrote to the zephyr foundation.  I saw that as of june 2010 there were 1725 identified like myself.  I wonder if I was one of those...lol..  TY.

Online Jeff G

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #32 on: June 15, 2012, 02:56:49 PM »
Hi Bemy , welcome to the forums ! . Now that you have posted 3 times you will be able to send and receive Pm's . Three post is the magic number for PM privileges and you may now grow a unicorn horn as a side effect  ;) .

Offline lforsyth

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #33 on: July 21, 2012, 05:59:23 PM »
I really don't know when I was infected. It was in the early 1980's. Anonymous testing wasn't available until 1986 after the Surgeon Generals report was posted in the Sunday Paper that summer.

All my friends tested positive like me. We all knew we were probably positive. They are all gone now and I think it was the policy of being under 300 ppm T-Cells. It was too late for them.

I lucked out that I when until 1997 before I was put on meds. I live with survivor guilt every day. That's why I'm not active at all.

But I try to support AIDS Walk and other activities at work, with little success. I'm Sorry.
Tested POZ in 1986, knew there was something wrong in 1985. 04/2010 CD4: 975 Viral Load undetectable. Prezista, Norvir, Truvada, Acyclovir, Plavix, Lisinopril, Metoprolol and a bedtime snack of Lipitor (YUM)

Offline justlooking5000

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #34 on: August 07, 2012, 06:15:46 PM »
I was diagnosed HIV in 1985,active duty Army, AIDS in 1995 and made a complete turn-around in 1998; no VL and CD4 at 700.  Not so good these days, but still kicking.

Don
Still Kicking

Offline konkrypton

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Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #35 on: August 13, 2012, 02:18:09 AM »
I guess anyone that remembers the CD "Red Hot and Blue"
OMG! I had that CD! I still have the songs since I ripped the CD in iTunes, but the CD is long deceased.
KK
--
I distrust morning people. I suspect they setup the rules of life while the rest of us slept.

Offline konkrypton

  • Member
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  • Everything works...in theory.
    • Nite Ramblings
Re: WHAT IS A LONG TERM SURVIVOR???
« Reply #36 on: August 13, 2012, 02:22:29 AM »
{snipped}
 My state, MA insists that this list with names is kept on a PC, in a locked room, with no internet connection so it is impossible for someone to hack into the data.
{snipped}
Am I the only one who pictured Tom Cruise hanging from a wire trying to get those names copied off to a disk?
KK
--
I distrust morning people. I suspect they setup the rules of life while the rest of us slept.

 


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