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Author Topic: Who Qualifies As a Longterm Survivor?  (Read 47371 times)

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Offline Andy Velez

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Who Qualifies As a Longterm Survivor?
« on: April 26, 2008, 11:14:04 PM »
From time to time, as has happened again just recently, the question comes up as to who and what is a longterm survivor. Those who've been around here for a while know the conversation can become a contentious about this subject. People have wondered (and worried) if they qualify. Do you have to be HIV+ for at least 5 years to qualify?Some have resented those who are relative newcomers by the standard solely of length of time they've known themselves to be infected.

Some have learned very soon after becoming infected about their status. For others it has been a longer time and even years during which they either didn't know or sometimes suspected but didn't get tested for various reasons until circumstances such as becoming very ill made their positive status official. 

As you know from reading in the I JUST TESTED POZ, lots of people come here when it's all brand new. Someone just wrote in here to this site the other days only hours after being told. To him someone who's been living with HIV for even a year or two might be considered a longterm survivor.

What I suggest is that more important than the length of time one has been positive is how one feels about it and themself  as a veteran of living with the virus. Further, that's it's more important to continue to share experiences, information and points of view here than it is create any kind of a clique or hierarchy about this. For sure those who have lived through the earlier years of the epidemic  sometimes have memories and insights that are valuable. Some have offered an amazing perspective and knowledge about everything from meds to politics to very personal experiences. And others whose experience has been shorter have been through a lot too as you know if you're a regular reader here.

Overall I would just like to have this forum always be welcoming. Anyone who wants to be here is in as far as I am concerned. And I hope the spirit of inclusion will dominate over anything else.     

 

Andy Velez

Offline J.R.E.

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Re: Who Qualifies As a Longterm Survivor?
« Reply #1 on: April 27, 2008, 06:51:01 AM »
Who Qualifies as a long term survivor

The following article was written in 1992. The author of the article Michael Callen, was born 4/11/1955 and died 12/27/93 of complications due to aids. A lot has changed, since this article was written, the statistics mentioned are obsolete now, but there is still a lot of it , that remains true. How many other Long term survivors, can relate :

http://en.wikipedia.org/wiki/Michael_Callen

 LONG-TERM SURVIVAL
By Michael Callen

Talk Symposium Amsterdam 1992



I want to make one thing clear about what I'm going to say about long-term survivors: I'm not a scientist, I do not represent these to be scientific. You might think as the Monet of AIDS: I will give you impressions. I think they are worth something, but for those you blue-suited people who want to see the data, all I have to offer is what I learned to actual long-term survivors, and I basicly asked them in their own words why they thought they had survived and I covered a broad range of possible reasons and some patterns emerged.

Long term survival: first thing to say is that we exist. You might not know it if you relied for your information on mainstream media. According to the US government statistics - which you can believe or not, they are not very well kept, but they are all we have - at least in the US 9% of people with full blown AIDS live 3 years or more, and 5% live 5 years or more. Unfortunately, there have not been significent improvements in median survival since I was diagnosed in 1982. The life expectancy of a person with AIDS has only been extended by 6 months. I personally believe that that 6 months is attributable to our ability to prevent pneumocystis pneumonia, the number one killer of people with AIDS.

The first thing I want to say about long-term survivors is that there definitely is a survivor personality. But for every pattern I found, I found exceptions. And that actually made me very happy, because it says to me that there is no single way, there is no recipe, no magic way to become a long-term survivor. I personally believe that each person's AIDS is unique, is different. They probably arrived in it in a slightly different way. We are each bio-chemicaly, biologically, gentically unique. And so I never expected that any one approach would work for everybody with AIDS. But I do found the patterns that I found fascinating and I will provide them to you.

If I had to summarize in one word the common characteristic among survivors, it would be 'grit': people are incredibly feisty, incredibly knowledgable, not at all passive, very aggressively involved in the struggle to survive.

They spoke very passionately of what they referred to as 'healing partnerships with their health-care providers', by which they meant that they respected the opinions and expertise of the various health-care providors that they sought out, but they did not do something simply because they were told to do something. In every instance, they wanted to know what their options were, they wanted to know what the possible side-effects were, and they had worked out relationships with their health-care providors that permitted a dialogue to go back and forth. And in fact, one's relationship with one's doctor is probably the most important relationship that you have, with the possible exception of your lover, when you have AIDS. And it is a lot like having a lover: it involves fighting, and being honest about your emotions, and talking. And the long-term survivors that I interviewed were very eloquent about how they had worked over years to achieve a really open wonderful relationship with their health-care providers.

Every long-term survivor mentioned the phrase 'major life-style changes'. That meant the obvious: it meant that they immediately started practicing safe-sex, to avoid exposure to other possible co-infectious factors. Most of them gave up drugs and alcohol, although some of them not entirely.

Also, among lifestyle changes: a lot of people had dabbled with diet changes, but in almost no instance had anyone been able to persist in a radical diet change.

Everybody talked about, among lifestyle changes, what they called 'emotional house cleaning', usually after they had survived their first major opportunistic infection. It represented a crisis to them, and they did some soul searching. They went through their relationships and they either repaired them or they ended them. They spoke generally about needing to get rid of people in their lives who refused to support them in their belief that they could survive well beyond statistical projections.

I don't know whether it's true here, but in America Elizabeth Kubler-Ross is very popular and everybody is an instant expert on dying. And there are five stages, and people will constantly treat you as if you are in one of the stages, usually denial. If you talk about maybe sticking around longer than the 18 months allotted to you. People will look at you and say 'yeah, sure !' But long-term survivors were militant about it; they simply wouldn't put up with it. They spoke very movingly about needing to surround themselves with people who would support them in their hope.

Interestingly, another thing that everyone mentioned was that knowledge of another long-term survivor was crucial to maintaining their own belief in long-term survival. And that's really not so mysterious, when you stop to think about it. If you set out to do something that no human has ever done, it's a different experience than if you set out to do something that few humans have done. You know that it can be done.

The most surprising finding among my sample of long-term survivors was a clear rebirth of spirituallity. With two exceptions - me and one other guy - all the long-term survivors talked about taking great comfort from their spiritual beliefs. It split almost in half: half had actually returned to the religions of their childhood, although none in a fundamentalist, judgemental way, and the other half spoke more generally of the sense that there was a meaning to suffering, a life after death. And there was no question that they took great comfort from those beliefs.

The long-term survivors were all passionately committed to life. That may sound pretty obvious, but for those of you who may have been around people with AIDS, this is going to sound simplistic, but I can't think of any other way to put it. When a catastrophic illness lands in your lap, you really have two choices: it's either a challenge to live, or challenge to begin dying, and I have seen people make both choices. I have seen people give up, die on cue, and I have seen people fight.

I want to be really clear here: there is, among people with AIDS, this short-hand notion, that if you want to be in the long-term survivor sweepstakes, you have to have the right attitude. But nobody ever really defines what that means. What is the right attitude? What I concluded from interviewing four dozen long-term survivors, as friends, is that you have to have the right attitude, by which I mean you have to believe in the possibility of survival, and you have to be hopeful and surround yourself with people who love and will support you. That will not, however, guarantee that you are a long-term survivor. The inverse seems to be true, however: I have not yet met a single person, who became a long-term survivor, who did not believe that it was possible.

It is interesting that, at least it was interesting to me, that the profile of extraordinary survivors with AIDS was pretty identical to the profile of extraordinary survivors of other so-called terminal diseases.

Interestingly enough, about half of the long-term survivors were in long-term loving relationships, and those who were spoke about how they could not envision going through AIDS alone. And taking tremendous comfort and support from their loved-ones, and in some cases it was practical support.

All of the long-term survivors had dabbled with non-allopathic medicine. What I would say about the long-term survivors is that most intergrated allopathic and non-allopathic medicine. Out of the 48 people I interviewed intensively, only one survivor had completely turned his back on Western medicine, and refused to take any pharmaceutical. And I have to say that he is still alive and glows with health. He is probably the healthiest among us. He is macrobiotic.

Certainly, no single alternative approach to healing predominated, I mean, there were people who were into Reiki, or massage, or meditation, or diet, or vitamins. And frankly, most people did not stick with anyone approach. There was a lot of walking around.

Virtually every long-term survivor was involved in the political struggle to end AIDS, which is very interesting to me. My theory of why that might be so is that AIDS can very easily consume you - your AIDS. You can close the world around you. When you have AIDS, to know that you are having some effect on other people, some beneficial effect on other people, to get outside your own tragedy and connect with other people, seem to be very important, seem to be healing.

I have been pretty prominent in my opposition to the use of AZT. And I didn't expect to find similar opposition among the long-term survivors, but I did. It was pleasantly surprising. Of the four dozen, only four had ever used it at all, and three are dead and one is dying of AZT-induced lymphoma. The overwhelming majority of long-term survivors had somehow managed to resist the enormous pressure to take AZT. This was very much a distinguishing characteristic of long-term survivors, by which I mean a scepticism about experimental medications. Long-term survivors, for what it's worth, take a very sceptical wait-and-see approach.

Nine out of 10 drugs that ever enter any phase of human testing fail, as either too toxic or non-effective. Well, that to me is quite startling if true: if the odds are stacked against you 9 to 1, then I do not understand the current drugs-into-body frenzy. My AIDS activist friends who are in the forefront of this drugs into-body frenzy, I feel are very misleading to people with AIDS who are frightened and desperate. They only seem to talk about two possible outcomes to taking experimental drugs: one is that it works and one that it doesn't. There is a third, apparently much more common possibility, which is that you will be worse off than if you did nothing at all. And nobody likes to talk about that because it's so unpleasant, but from my reading of the literature, sometimes doing nothing is much better than doing the wrong thing. And it would seem, on the record of government sponsored clinical trials, that most people are actually worse off taking these toxic drugs that if they hadn't started at all.

The above was abstracted from a transcript of a talk Michael Callen gave in May 1992 in Amsterdam at the international symposium 'AIDS; A Different View'.

Michael Callen is the author of 'Surviving AIDS' published by Harper Collins Publishers, New York 1990, (ISBN 0-06-016148-5)



Ray
« Last Edit: April 27, 2008, 10:10:09 AM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
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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


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Ann

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Re: Who Qualifies As a Longterm Survivor?
« Reply #2 on: April 27, 2008, 07:46:55 AM »
To my mind, a LTS is someone who was diagnosed before or during the first year of so of the advent of the PIs.

However, I don't really see the wisdom of making this forum exclusive to LTS using some cut off date. Someone who is more recently diagnosed, but diagnosed with advanced aids, could easily qualify to post here. As could someone who is diagnosed later in life.

What I would like to see is people who are more recently diagnosed have a bit more respect when posting here. I don't like to see our veterans being given a hard time. Nobody's virus is better or worse than anyone else's, however the experiences of the virus can be very different indeed. Most of us will never quite know what some of our veterans went through - and we should count our blessings, not give them a hard time when they want to vent about those experiences.

More newly diagnosed people can vent about their own experiences too, and we have not one, but two forums dedicated to this purpose - "Living With" and "I Just Tested Poz".

Having a forum dedicated to LTS makes it easier for them to find each other and therefore relate to each other in their own threads, without having to search through "Living "With". I think they deserve to have this convenience. They've earned it. 

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 Dachshund

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Re: Who Qualifies As a Longterm Survivor?
« Reply #3 on: April 27, 2008, 08:28:24 AM »
To my mind, a LTS is someone who was diagnosed before or during the first year of so of the advent of the PIs.

That's the definition I go by, but I understand the shades of grey ;) associated with HIV and aging. Unfortunately for us LTS we have to deal with both so maybe we do get a bit cranky at times. Though I've never really witnessed a "hey you kids, get off of my lawn" attitude in the LTS forum.

What I do know is that people that have been infected as long as I have share a sorta post traumatic aids/stress syndrome. Along the lines of what soldiers must feel with their brothers and sisters they shared a foxhole with during a time of death and turmoil. Before anyone jumps on me, I'm not equating our struggle to fighting in war, but the LTS know what I mean.  We deal, we manage, but we know that there's only a handful of us left with that shared experience and it gives us comfort. Well it gives me comfort.

So what's the definition of a LTS? Can't really tell you, but I sure as hell know one when I see one.

May I suggest to all the LTS that if you think someone is posting inappropriately in the LTS forum, just hit the mod button. Nine times out of ten the mods will move their thread to the appropriate forum, so we don't have to run them out of the yard with a water hose. ;D
 
Now back to the topic at hand, Dunlap's Disease (my belly done lapped over my pants).
 

Offline Miss Philicia

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Re: Who Qualifies As a Longterm Survivor?
« Reply #4 on: April 27, 2008, 08:38:04 AM »
To my mind, a LTS is someone who was diagnosed before or during the first year of so of the advent of the PIs.


I'd probably add "and was on meds before PIs" but I'd get a bit of crap from people.  Seriously though, I've noticed in my "meat life" long term survivor monthly support group here in Philly that the primary raison d'Ítre seems to be a shared sense of side effects from being on pre-HAART regimens. 

Yes, there are shared accrued mental issues for those of us suffering in excess of a decade of infection (or so...) but what I just described above seems to actually be the primary cause of seeking refuge among like-minded (or rather experienced) sufferers.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #5 on: April 27, 2008, 08:46:37 AM »
I don't agree that "anyone who wants to be here is in," or why have a LTS forum?  I used to think 10+ years, but then, how would some people relate to, as Philly mentioned, being on those god-awful large doses of AZT some of us had to endure? 

People who are recently diagnosed, and who get an AIDS diagnosis may well have some valuable input, but then again, cannot relate to the years of unique struggles a lot of us had to deal with, pre-all the new medications and treatments that are available now.  There are certain things only those of us who have been living with this since the late 80's, very early 90's, can relate to.

I think Dach's suggestion, of hitting the mod button if we (I) do feel offended is probably the best solution at this point.  Otherwise, I can see myself probably catching hell from a mod at some point. 

I'm thankful for a LTS forum, as there's no local support group where I'm at, and would just hate to see it become open to everyone who feels the need to post here about something they really have no idea about.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Dachshund

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Re: Who Qualifies As a Longterm Survivor?
« Reply #6 on: April 27, 2008, 08:49:11 AM »
I'd probably add "and was on meds before PIs" but I'd get a bit of crap from people.

I agree with that, most of the LTS around here were on on some type of meds pre-PI's. We all share the common fond memory of AZT.

Offline Miss Philicia

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Re: Who Qualifies As a Longterm Survivor?
« Reply #7 on: April 27, 2008, 08:55:52 AM »
Furthermore, the point of this forum is NOT to create some sort of social clique based on a fabricated desired VIP status.  There are real reasons behind it, and it's actually quite insulting that others may view that any of us want to be in this god forsaken category.  Seriously.

Any non-LTS'er who wants to trade my situation for theirs I'd gladly trade shoes with you.  Any day, any time.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #8 on: April 27, 2008, 09:09:30 AM »
Any non-LTS'er who wants to trade my situation for theirs I'd gladly trade shoes with you.  Any day, any time.

I second that.  Seriously.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline hartiepie

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Re: Who Qualifies As a Longterm Survivor?
« Reply #9 on: April 27, 2008, 09:19:06 AM »
To my mind, a LTS is someone who was diagnosed before or during the first year of so of the advent of the PIs.   Ann


This has been my yardstick though I can't say where I got it. Don't ever remember seeing anything official about it.


Furthermore, the point of this forum is NOT to create some sort of social clique based on a fabricated desired VIP status.  There are real reasons behind it, and it's actually quite insulting that others may view that any of us want to be in this god forsaken category.  Seriously.
Any non-LTS'er who wants to trade my situation for theirs I'd gladly trade shoes with you.  Any day, any time.

My Mom has cancer and will sometimes bring up the 'it's a gift' routine and I know she is trying to cope with her illness. I sometimes will hear that around HIV/AIDS, but I wanna scream "Show me the Return Counter now!"

Also, once I found out about the IGNORE option on these boards, it's much easier for me to read them because certain posters have a way of getting to me (and undoubtedly, I do for them).

Offline Andy Velez

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Re: Who Qualifies As a Longterm Survivor?
« Reply #10 on: April 27, 2008, 09:41:31 AM »
Ann's comment about wanting those who've been living much longer with the virus to be treated with respect here is something I strongly concur with. They've lived through a lot. They have experience and knowledge worth passing on -- and have earned a special respect for having lived through some tough times that others may hardly be able to imagine today.

Andy Velez

Offline bear60

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Re: Who Qualifies As a Longterm Survivor?
« Reply #11 on: April 27, 2008, 12:06:30 PM »
"I'd probably add "and was on meds before PIs" but I'd get a bit of crap from people.  Seriously though, I've noticed in my "meat life" long term survivor monthly support group here in Philly that the primary raison d'Ítre seems to be a shared sense of side effects from being on pre-HAART regimens. 

Yes, there are shared accrued mental issues for those of us suffering in excess of a decade of infection (or so...) but what I just described above seems to actually be the primary cause of seeking refuge among like-minded (or rather experienced) sufferers." quote Philly
..........................................
Well, this brings up, in my mind anyway, (or whats left of it), the question about LTNPs who, like myself, were diagnosed before PI's but have never been on any meds.  Do we have to go to our own forum to post about depression from dealing with HIV for so long?
Poz Bear Type in Philadelphia

Offline ademas

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Re: Who Qualifies As a Longterm Survivor?
« Reply #12 on: April 27, 2008, 01:24:45 PM »
There's also those of us who were infected early on (the winter of '82 here), and didn't test because we just didn't care to know, or because our heads were partially buried in the sand, or because there was nothing we could do.

I remember my sero-conversion well, and I feared it at the time, and I remembered it all those years.  I watched men I had been intimate with get sick and die.   Others took the high doses of AZT and became dreadfully ill, and most of them died.  No...actually...all of them died.  I was there with them, and the writing was on the wall, but I still didn't test.  I didn't see a good reason to do so at the time, and I was terrified.

When I finally did test it was early '94.  CD4's 79 and a 4% ratio.  Weird, because in the end, it was my decision not to test that spared me from monotherapy, and that qualified me for the Crixivan/AZT clinical trial (you had to be treatment naive).  Sometimes I wonder if that decision not to test--based mostly on fear--is what saved my life.  That might sound overly dramatic...but I had several good friends who were not AZT naive (and did not qualify for the early clinical trials) pass away before the trials were complete.

Anywho...I guess I don't have a strong opinion about who qualifies as a LTS and who does not. 

I do know that I sure feel like one.


Offline aztecan

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Re: Who Qualifies As a Longterm Survivor?
« Reply #13 on: April 27, 2008, 02:14:40 PM »
I never did monotherapy. I tested positive in 1985, but maintained adequate T cells until 96 and didn't need meds till then.

I was lucky.

But I can identify completely with the post traumatic stress Doxie mentioned because I lived through years when no meds were available. They weren't even sure what to treat the OIs with, including PCP, MAC, CMV, etc.

AZT wasn't the only experimental therapy being espoused. I remember the blood draining and heating theory, the Interferon theory, the macrobiotic theory, the Chinese herbal medicine theory, etc. I didn't try any of those either.

But had the need arisen, I would have. Hell, I would've gargled with Drano had I thought it would help.

The real terrors for me came when there was no treatment.

People were dropping like flies, or just disappearing because their families whisked them away before anyone could find out what had happened.

I remember the absolute fear of not knowing what was coming next, or when it would come.

I remember being told the only thing I could do was "pack on those pounds" so I would have something to fight with when the time came, which one artless, cadaver of a doctor told me would be two years or less.

At the time, I was a tad thin and, for the life of me, literally, couldn't gain weight.

I remember seriously considering ending my life rather than waiting for the end to find me. It wasn't that I was weak. I was scared out of my wits because I was seeing the end stages of AIDS every day and I was terrified that my turn was next and what that would entail.

This wasn't a fear that lasted a day or two, or a month or two. We are talking years of living in fear that left me numb and in a state equivalent to limbo - not quite heaven, not quite hell, not quite alive.

That is why, even though I didn't take AZT monotherapy, I consider myself an LTS.

HUGS,

Mark
« Last Edit: April 27, 2008, 02:19:50 PM by aztecan »
"May your life preach more loudly than your lips."
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Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #14 on: April 27, 2008, 02:20:58 PM »
Mother Mark, I can identify with every word you said.  I remember a friend of mine who passed from toxoplasmosis in the early 90's also (remember that one).  For years, I didn't clean the cat's litter or dig in the soil without two pairs of latex gloves on.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

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Re: Who Qualifies As a Longterm Survivor?
« Reply #15 on: April 27, 2008, 02:33:58 PM »
Yes, toxo. I remember that well. I didn't play in the dirt or clean the cat box for years either.

Now, of course, I garden with wild abandon!  ;)

The article Ray posted by Michael Callen hit a few cords with me as well. Funny he should mention the spirituality issue, considering the banter now ongoing in another forum here.

I think he hit it on the head though when he said LTS's have grit. That is probably the best description I have heard of it thus far.

Grit.

HUGS,

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

Offline OzPaul

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Re: Who Qualifies As a Longterm Survivor?
« Reply #16 on: April 27, 2008, 03:31:35 PM »
I would like to comment on Bear 60's remark of where do us LTNP's fit in. (sorry I don't know how  to use the quote function).

In my mind as someone who has been positive since 1981, I have no doubt that LTS's is absolutely where I belong, despite not having been on meds,  27 years is a long time to live with the bug. I have had and still have ongoing anxiety and depression involving my positive status, my LTNP status not withstanding. The fact that I am an LTNP today does not mean I will always be an LTNP.

just saying
Paul

Offline J.R.E.

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Re: Who Qualifies As a Longterm Survivor?
« Reply #17 on: April 27, 2008, 07:58:56 PM »

In my mind as someone who has been positive since 1981, I have no doubt that LTS's is absolutely where I belong, despite not having been on meds,  27 years is a long time to live with the bug.
just saying
Paul


Absolutely Paul. You do belong here !! After my diagnosis in 1985, I didn't start meds until 2003. So, while I don't have some of the experiences that others speak about, as far as the early meds (AZT), I have known many throughout the late 80's and 90's,( as you have also, I am sure) and know very well their experiences with the drugs.


Take care of yourself----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg 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


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline OzPaul

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Re: Who Qualifies As a Longterm Survivor?
« Reply #18 on: April 27, 2008, 08:21:14 PM »
Thanks Ray  :D

I've always felt very welcomed by you here at the Forums. Truth be told, I've never felt excluded at the Forums at large nor here at LTS's.

Cheers
Paul

Offline sharkdiver

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Re: Who Qualifies As a Longterm Survivor?
« Reply #19 on: April 27, 2008, 11:00:17 PM »
I
 There are certain things only those of us who have been living with this since the late 80's, very early 90's, can relate to.


This is something I completely agree with. I originally joined AIDSmeds because of the Longterm Survivor forum. For the first time I felt as if I wasn't alone in this world. There were others like me that survived... maybe a bit bruised and battered but we survived. Those who remember what it was like before any meds... only a prognosis of death. Those who saw their friends die a horrible death and wondered and waited ..."Will I be next?" (and sometimes coming close) Those of us that learned to be tough and somehow find the strength within ourselves to carry on.

There are something to those experiences that separate me and my thoughts, my emotions and outlook on life, etc. from the posters in the other forums. I have found community here. I have found people that I don't have to explain what I went through over and over again. I found people here that check in with me every once in awhile to make sure I'm okay. I found people here in LTS that say "yeah, I remember" and that is just enough to give me comfort.

Offline bear60

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Re: Who Qualifies As a Longterm Survivor?
« Reply #20 on: April 28, 2008, 11:15:50 AM »
Its nice to be recognized as a part of the Long Time Survivors forum....I always felt welcome.....I just never was sure how a LTS is defined.
I have a comment about the Michael Callen post:
If you notice, Michael immediately starts talking about people with AIDS as being long time survivors.  In those early years HIV almost always meant an AIDS diagnosis and 6 months seemed like a long time (as he makes note of life span increasing by 6 months).  How far have we come since then!
quote Michael:" Long term survival: first thing to say is that we exist. You might not know it if you relied for your information on mainstream media. According to the US government statistics - which you can believe or not, they are not very well kept, but they are all we have - at least in the US 9% of people with full blown AIDS live 3 years or more, and 5% live 5 years or more. Unfortunately, there have not been significent improvements in median survival since I was diagnosed in 1982. The life expectancy of a person with AIDS has only been extended by 6 months. I personally believe that that 6 months is attributable to our ability to prevent pneumocystis pneumonia, the number one killer of people with AIDS."

I remember meeting Michael here in Philadelphia.  He had an infectious laugh, a good singing voice  and a great sense of humor.  Its too bad he didnt survive to be a part of whats happening today. Remember the CD he put out?
Poz Bear Type in Philadelphia

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #21 on: April 28, 2008, 02:23:28 PM »
Furthermore, the point of this forum is NOT to create some sort of social clique based on a fabricated desired VIP status.  There are real reasons behind it, and it's actually quite insulting that others may view that any of us want to be in this god forsaken category.  Seriously.

Exactly!  I think Philly and I pretty much agree on our "definitions".
And thanks Ann for your comments, regarding a little respect.   It's not as if we are demanding to be recognized in some special way, but it just seems to me that common sense and a little courtesy go a long long way.

I don't think any of us have ever 'pounced' on someone who posted here that we feel "didn't belong", at least I hope we haven't.

hugs,
Alan
"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 AndyArrow

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Re: Who Qualifies As a Longterm Survivor?
« Reply #22 on: April 29, 2008, 04:18:11 AM »
I have always felt reluctant to post in here.  Although Philly, told me since I had been diagnosed many moons ago and am currently on Fuzeon (how I hate needles) I qualify.  Everyone here has been very kind to me.

The thing that strikes me the most is how much healthcare workers have changed.  I remember before being in the hospital with people wearing gowns over their scrubs, face masks, rubber gloves and head coverings.  They looked more like astronauts than nurses.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline MarcoPoz

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Re: Who Qualifies As a Longterm Survivor?
« Reply #23 on: April 29, 2008, 10:50:51 AM »
Hmmm...great question.  I too remember taking handfulls of those nasty blue and white stomach razors called AZT.  Could be the burn also came from the Scotch I chased them with back then  ;)

I'm not sure if I 'qualify', but I look at it this way.  I began volunteering then working in HIV about 3 years after my diagnosis.  I took pictures of everyone and everything and built up quite a 'rogues gallery' of other pozzies.  I began placing these pictures on my office wall.

One day I began feeling even more stressed than normal.  Had one of those panic attacks that people talk about--I just couldn't figure out why--then I looked up.  The wall had become a memorial.  A 8 foot by 8 foot memorial of dead people...my friends, collegues and clients.  When I started working in HIV I did it like so many others--to give back to those who had helped me in my early confused days.  Now it seems that I was serving more ghosts than live beings.

So...........

I took down all my pictures of all my sweetly loved friends and was lucky enough to be able to travel to the AIDS Memorial Grove in San Francisco. 

I piled up the pictures in the middle of the circle--lit a candle..said a prayer...meditated then touched fire to the snapshots.  As they burned--I prayed for my friends...and then traveled home in peace.

-Marco

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #24 on: April 29, 2008, 07:11:34 PM »
What a great story Marco!

A group of us from AIDSmeds visited the Grove last summer; we held a very moving memorial service there, using flowers in much the same way you used the photos.

I have very few photos of my "sick years".   I wouldn't let anyone come around with a camera.   I did dig out a few recently, one of me taking a home pentamidine treatment.   Ahh, those were the days......NOT!    ;D
"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 aztecan

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Re: Who Qualifies As a Longterm Survivor?
« Reply #25 on: April 29, 2008, 07:22:13 PM »
Hey Marco,

Welcome to the forums and what a great story!

I was with Alan at that ceremony last year. It was very moving for me and your rendition of your experience helped bring that back to me.

HUGS,

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

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #26 on: April 29, 2008, 09:01:28 PM »
That's a really good story, Marco.  I used to have pictures of friends who visited an unveiling of the Quilt when it was in Washington, back in, was it 1991 I think?

I have a picture of myself (only one) when I had started to recover from wasting, but I think I only weighed like 95 in the picture (I had gotten down to 80 lbs).  All other pictures are gone, lost when a house I was living in had the main pipe break in the basement.  But, I do have my memories.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #27 on: April 29, 2008, 09:40:47 PM »
It was a delight to have a big red sign posted on my hospital room door cautioning those who entered to wear mask, gloves, gown, eye protection and face shield. Take percaution against blood borne pathogen exposure.

This was after delivering my baby...

Offline redhotmuslbear

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Re: Who Qualifies As a Longterm Survivor?
« Reply #28 on: April 29, 2008, 10:12:00 PM »
It was a delight to have a big red sign posted on my hospital room door cautioning those who entered to wear mask, gloves, gown, eye protection and face shield. Take percaution against blood borne pathogen exposure.
This was after delivering my baby...


Sounds like the big biohazard symbol that was posted outside my hospital room in December 1994 during a stay for brain surgery.  I never saw it.  My partner and family thought nothing of it after visiting a number of friends with AIDS over the years.  And the doctors never told me that I had tested positive after the surgeon cut himself while operating.  They were more civilised than to resort to masks and face shields, though, and latex gloves were already required.

Bastards.


Namaste,
David
"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 netta

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Re: Who Qualifies As a Longterm Survivor?
« Reply #29 on: April 30, 2008, 12:31:25 PM »
I remember back around 1984 when my boyfriend was in the hospital sick, the docs and nurses suited up with mask and all and caution signs all over the door,but no one made me suit up when I came to visit him , I always asked what was his daignosis, and no one told me he had Aids, not even him, I guess they thought I was going to die next anyway. He took the secret to his grave. I also remember AZT and how I could never tolerate it, so I stop taken it. I use to save my friends obituaries, many of my friends died because of aids and then I had to stop, it got too depressing. Betty, I also have a picture of myself I keep, when I weight only 95 lbs. People don't recognize me in the picture.Hell I don"t recognize me!!! Through it all, I am thankful I am still here and able to share with other LTS after 20+ years.
« Last Edit: April 30, 2008, 12:41:19 PM by netta »
"to thine own self be true"

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #30 on: April 30, 2008, 05:15:21 PM »
Yep that would be the sign David.

I recall my husband blocking the sign with his body when my family visited. We hadn't told anyone we where HIV positive yet.

Offline heartforyou

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Re: Who Qualifies As a Longterm Survivor?
« Reply #31 on: May 02, 2008, 06:52:23 PM »
Quote
The overwhelming majority of long-term survivors had somehow managed to resist the enormous pressure to take AZT.

That is exactly what my best friend and medical doctor told me in 1987: do not take any medication yet. Although my HIV doctors did everything to have me started on AZT,  I did not start to take any meds until I got PCP until 1995.

I took AZT for one year and it was the cruelest, most nauseated time of my life... but... it just kept my head above water until the PI's came in....

So, I do agree with that quote...

love

Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #32 on: May 02, 2008, 07:00:57 PM »
 Being a long term survivor and the effects its had on me is better shared with others that have also been there . There is many things I would never share if I thought people newly diagnosed
with HIV may read . Some things we longtimers endured would only add to the anxiety that newly diagnosed people already feel .

I have never been to war but I do have battle scars from  26 years of living with aids .

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #33 on: May 02, 2008, 07:25:23 PM »
The overwhelming majority of long-term survivors had somehow managed to resist the enormous pressure to take AZT.

That is exactly what my best friend and medical doctor told me in 1987: do not take any medication yet. Although my HIV doctors did everything to have me started on AZT,  I did not start to take any meds until I got PCP until 1995.

I took AZT for one year and it was the cruelest, most nauseated time of my life... but... it just kept my head above water until the PI's came in....

So, I do agree with that quote...

love

Hermie

I was never able to tollerate AZT so being pig headed me I wouldn't take it reguardless of what the doctors told me.

Years later when they where looking to change my meds they tried me out on Trizivir. (AZT/3TC/Abacavir)
I got super sick. My hemoglobin was down to 7. Normal is something like 12 to 18.

So no more AZT for me. No sir, no how, no way.

Offline Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #34 on: May 02, 2008, 07:35:12 PM »
I tried AZT in the early 80's . Some one correct me or refresh my memory but I was supposed to take hand fulls of it at a time  I think .I remember freaking out and thinking that I was going to die just from the side affects . I quit taking it after 2 weeks and tried to come to terms with the fact that I was going to be sick with no options for treatment . I was lucky to live long enough until better treatments were available . 

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #35 on: May 02, 2008, 07:43:03 PM »
I cant recall the exact number but it was alot. I hate taking pills but I've gotten better at it and I'm more mature than I was then.

slightly LOL

Offline OneTampa

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Re: Who Qualifies As a Longterm Survivor?
« Reply #36 on: May 03, 2008, 06:45:11 PM »
I came to this site after Googling "long term HIV survivors".  I was curious about how others managed their lives being HIV+ for many years. I must say I am so glad I found this site.  I've learned a lot from others and about myself these past 22 years HIV+.

And yes, I took AZT (originally a cancer drug that had been around for years) as  it was the only medical regimen available to treat HIV at the time in the 80s. So I guess I join others at he extreme end of the definition of long term survivors although there are others who have survived much longer.  I guess we all have heaping portions of "grit" and "luck" to still be here.

"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Offline Dachshund

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Re: Who Qualifies As a Longterm Survivor?
« Reply #37 on: May 03, 2008, 07:33:37 PM »
I tried AZT in the early 80's . Some one correct me or refresh my memory but I was supposed to take hand fulls of it at a time  I think .I remember freaking out and thinking that I was going to die just from the side affects . I quit taking it after 2 weeks and tried to come to terms with the fact that I was going to be sick with no options for treatment . I was lucky to live long enough until better treatments were available . 

For the life of me I can't remember how many pills it was either. I do remember that after two weeks I stopped the AZT and told my doctor I would rather be dead. Stopped seeing my doctor and went on a multi-year bender, the coke and beer seemed to work rather well until Viracept came along right in the nick of time because I was dead man walking.

Offline J.R.E.

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Re: Who Qualifies As a Longterm Survivor?
« Reply #38 on: May 03, 2008, 07:37:32 PM »
I tried AZT in the early 80's . Some one correct me or refresh my memory but I was supposed to take hand fulls of it at a time  I think .

Having never taken AZT, I can't remember how much AZT was taken. If I can remember correctly, The dose was 1200mgs, A friend of ours ( that has since passed on) was taking it ( I believe ) Five times a day back in the late 80's.

EDITED: I did take AZT in Trizivir, back in early 2004, but was only on it a month. Couldn't handle it, and work at the same time.

Ray
« Last Edit: May 03, 2008, 08:14:37 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg 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


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #39 on: May 03, 2008, 08:17:33 PM »
 I was just reading over these post and had an AZT flash back ....I could almost taste that awful metallic taste that never went away until I was off that stuff for weeks .

Offline Catman

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Re: Who Qualifies As a Longterm Survivor?
« Reply #40 on: May 03, 2008, 10:20:03 PM »
 This topic has brought back memories that I had long ago thrown in the basement of my memory. I almost had totally eliminated each detail of my beginnings with hiv and that dreadful AZT. Yep, I took it, too. Back in 1986 I think it was, maybe a little later. AZT really made me feel so terrible that after a few months on it I quit it on my own will, stopped going to doctors for treatments and just waited to die. I didn't. I got a job and literally dived into it and almost forgot I had hiv until 1993 when I got pneumonia and did have to go see a doctor again. He is still my doctor today. By then new medications were out and I started with Zerit and something else like Crixivan or Viracept. I don't even remember because I've been through all the meds until none worked. Now I'm on Fuzeon, Aptivus and Norvir. Everything is fine and normal and my life and health is as normal as any hiv-negative person. I've become "undetectable" only with my actual combination of meds. I consider myself to be a long term survivor because being hiv positive and still kicking has not been a walk in the park especially when many of us suspected or knew we were positive even when no meds were available back in the 80's. I'm really at awe today at those cases that have been + since the 80's and are not sick nor taking meds! Do I wish I was one of them... :-*
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #41 on: May 05, 2008, 11:54:54 AM »
I don't remember the exact dosing....but what I DO remember is that damn pill box alarm going off ALL the time, because you were 'supposed' to take it every 4 hours.

I was one of the ones who took that awful, toxic drug (as prescribed!) and lived to tell about it.   I hate AZT.  It made me so sick.   I remember sitting at work, sweating and extremely nauseated..yet having to put on that "nothing's the matter" face, because (1) no one knew (2) we were afraid of losing our jobs/insurance if someone found out.

1988-96 were some really tough years for me, and AZT was a major factor in that.
"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 heartforyou

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Re: Who Qualifies As a Longterm Survivor?
« Reply #42 on: May 05, 2008, 02:30:00 PM »
Quote
1988-96 were some really tough years for me, and AZT was a major factor in that.

Sweet classmate of 1987.

You are one of the very few to have taken the drug and still be able to talk about it.
I am pretty sure AZT killed most of our friends back then.

Do you also remember the anemia??? not being able to walk... or even worse, climb stairs.
I worked in a fitness club back then... Imagine putting up a "hi, how are you today -smile " and pretending you were in the best of health.
While every 5 minutes the content of your stomach desperately wanted to come out.....

Oh honey.....

I am so glad you are still amongst us. You understand.

love
Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline leatherman

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Re: Who Qualifies As a Longterm Survivor?
« Reply #43 on: May 05, 2008, 04:12:09 PM »
I remember setting an alarm for every four hrs day AND night to swallow azt capsules (4 at a time I think it was) back in 92-94. It kept me so sick (though it did cut the viral load some) that it was killing me faster than my partner was actually dying from "wasting syndrome", so I quit taking it so one of us would be alive to bury the other one.

Ever since then, I've been on some type of "salvage routine", usually with no other meds available. But I survived PCP and pnuemonia along with side effects from nearly every med I've taken. Luckily, my latest regimen has worked for several years (only makes me puke 4 times a month), and I have at least 4 options if my recent non-compliance has made resisitance build up again.

However, I can't comment on PTSS. I lost a partner after 10 yrs in 1994 to AIDS, and I just lost my partner of 7 yrs (20 yrs as friends) at the start of this month to AIDS. I'm still living the "stress syndrome" and not to the "post traumatic" part yet.  ;)

mikie
leatherman (aka mIkIE)


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

Offline draco

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Re: Who Qualifies As a Longterm Survivor?
« Reply #44 on: May 05, 2008, 04:59:17 PM »
I'd probably add "and was on meds before PIs" but I'd get a bit of crap from people.  Seriously though, I've noticed in my "meat life" long term survivor monthly support group here in Philly that the primary raison d'Ítre seems to be a shared sense of side effects from being on pre-HAART regimens. 

Yes, there are shared accrued mental issues for those of us suffering in excess of a decade of infection (or so...) but what I just described above seems to actually be the primary cause of seeking refuge among like-minded (or rather experienced) sufferers.

In the 1990s I attended a support group for HIV infected men and was the only drug-naive man there, ever, in over 3 years.  I concur with your assessment and won't give you any crap.  Everyone accepted me but I could only empathize with many who were going through hell while I was waltzing along.   I stopped attending in part to feeling "unqualified" to be in the group.  I was an AIDS dilettante.

Now that I am in the select HAART group my life is still a relative breeze.  The first regimen I tried has worked since 2004 and the side effects lasted a couple of weeks.  I am almost a year overdue for blood work but remain optimistic my viral load is undetectable and my CD4s high enough to keep me well.  I'm cockeyed too.

Drac

Offline Peter Staley

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Re: Who Qualifies As a Longterm Survivor?
« Reply #45 on: May 05, 2008, 05:38:25 PM »
I am pretty sure AZT killed most of our friends back then.

Hermie -- I respectfully disagree.  All the experts I've talked to over the years claim AZT never killed anyone.  Yes, at its original dose (or OVER-dose!) of 1,200mg/day, it frequently caused anemia, and for many people, ongoing GI issues, including nausea, and fatigue.  It also became a political football, and ended up with a bad rap.  When it didn't save lives as a monotherapy like everyone had hoped, some activists and fringe doctors started saying "AZT kills," even though there is nothing in the literature about AZT causing deaths.

The good news is that at its current recommended dose, 600mg/day, it's a much more tolerable drug, and rarely causes anemia.  Even so, there are better nukes now, and I wouldn't recommend it as a first-line therapy.

Peter

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #46 on: May 05, 2008, 06:47:58 PM »
Oh, I remember taking those god-awful AZT pills in 1990 and having my hemoglobin drop to 2.  That was awful, but I agree with Peter.  I don't believe AZT "killed" anyone.  I'm just really grateful treatment has improved.  Otherwise, I'm sure most of us wouldn't be here to reminisce.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline MarcoPoz

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Re: Who Qualifies As a Longterm Survivor?
« Reply #47 on: May 08, 2008, 10:52:01 AM »
Yikes!!!!  Is it cool to admit that I'm STILL on my FIRST regimine that I started in in '95 and it STILL includes AZT? (I waited a few years because I was smart--or in denial--or drunk--or something)

Cd4's--790  39%
VL Undectable since 96

non-protease combo of combivir (AZT & 3TC) and viramune.

Offline Peter Staley

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Re: Who Qualifies As a Longterm Survivor?
« Reply #48 on: May 08, 2008, 10:58:13 AM »
Congrats, Marco!

Just more evidence that AZT always had a bad rap.  Isn't it interesting that no one ever said "Combivir kills"?  It was the number one selling AIDS med for many years after the HAART era started, and no one ever said Combivir was killing thousands of people (except HIV denialists).  Combivir contains AZT.

Peter

Offline J.R.E.

  • Member
  • Posts: 7,113
  • Joined Dec-2003 Living positive, since 1985.
Re: Who Qualifies As a Longterm Survivor?
« Reply #49 on: May 08, 2008, 06:19:27 PM »
Yikes!!!!  Is it cool to admit that I'm STILL on my FIRST regimine that I started in in '95 and it STILL includes AZT? Cd4's--790  39%
VL Undectable since 96



Yes it is !!! Great numbers, and on the same regimen !! Continued success!


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg 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


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

 


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