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Author Topic: Long term Survivors  (Read 4392 times)

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Offline RWR

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Long term Survivors
« on: June 27, 2012, 10:25:33 AM »
I found this article that stated back in the 90s that most long term people didnt take the azt that Doctors wanted us to. I did not take or my Buddy.  I was wondering if any of the long termers did on here? Also I would like to know where i fit in here age wise in the long term section.Thanks 


edited by Ann to remove a forbidden link
« Last Edit: June 27, 2012, 10:39:02 AM by Ann »
Hiv+ 1986
Isentress
Truvada

Bobby

Offline Ann

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Re: Long term Survivors
« Reply #1 on: June 27, 2012, 10:41:43 AM »
RWR, I removed from your post the rest of the link that included a blocked URL.

The website you linked to is a denialist website and we do not permit denialist links here, nor do we permit them any type of platform for their dangerous propaganda. These forums are a denialist-free zone and we enforce that rule without exception.

Posting denialist propaganda or links is a bannable offense on this website, so please do not do it again.

Thank you for your cooperation.

Ann
Condoms are a girl's best friend

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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

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

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

Online Miss Philicia

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Re: Long term Survivors
« Reply #2 on: June 27, 2012, 10:49:35 AM »
I took AZT a handful of years when I was first diagnosed. I am 47.
"Iíve slept with enough men to know that Iím not gay"

Offline RWR

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Re: Long term Survivors
« Reply #3 on: June 27, 2012, 11:09:43 AM »
Thanks Miss Philicia,I am 56 and 26 yearsAids/hiv I guess i do not know what a denialist site it. It was a survey of 8 Long term surviors and what they did to make it. I would like to'knoe why some of us have wasting some has lipo while others are fine after 25 Plus years.
Hiv+ 1986
Isentress
Truvada

Bobby

Offline leatherman

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Re: Long term Survivors
« Reply #4 on: June 27, 2012, 11:37:54 AM »
I took AZT for 9 months back in the very early 90s. Although it made me puke constantly, very anemic, and afraid I might die before my partner (who was much sicker at that time and in a clinical trial), I credit AZT with keeping me alive until better drugs (like ddI, zerit, kaletra, sustiva) came along.

I'm 50 now, been poz 27 years, and lived with AIDS for 20+ yrs.

this is the description from LTS section
Quote
This forum is a safe place for long-term survivors (LTS), defined as people living with HIV who tested positive for the virus before the advent of highly active antiretroviral therapy (HAART) in 1996.
being a LTS is not so much about chronological age; but about when you lived and when you were diagnosed (and what treatment you might or might not have had). Most people who post in this section range from their 40s to their 70s. Although HIV itself can cause lipo and wasting, often those problems are side effects of some of the earliest meds (like zerit for one) that LTSs might have taken.

oh, and AIDS denialists are those who either claim that HIV does not lead to/cause AIDS and/or that don't believe that HAART is the only thing that stops HIV.
leatherman (aka mIkIE)


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

Offline RWR

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Re: Long term Survivors
« Reply #5 on: June 27, 2012, 11:42:42 AM »
Thanks Mikie :D
Hiv+ 1986
Isentress
Truvada

Bobby

Offline Buckmark

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Re: Long term Survivors
« Reply #6 on: June 27, 2012, 05:27:58 PM »
I took AZT for a few months, back in the day... 1991 or 1992, I think.  Horrible drug.  What I remember most is (1) the fatigue, and (2) the smell -- my body actual smelled differently when I was taking AZT.  Kinda hard to describe.

RWR, regarding this question of yours:  "I would like to'knoe why some of us have wasting some has lipo while others are fine after 25 Plus years. " ?

I think the answer is:
  • Everyone reacts differently to different medications.  Not everyone encounters the side-effects listed for every medication, even non-HIV medications.
  • Earlier medications like AZT had some nasty side-effects, like lipo, or kidney stones.
  • Everyone reacts differently to the HIV virus, in that some people's immune systems react better to control HIV for longer than others.

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Online Miss Philicia

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Re: Long term Survivors
« Reply #7 on: June 27, 2012, 07:09:42 PM »
I really didn't have any side effects from AZT, excepting for sporadic headaches (which I've often gotten from other HIV meds too), at least nothing memorable after the first month.

RWR, I also have lipoatrophy from years of Zerit (ddi) and it was diagnosed as "stage 3" I think 4 is the most severe. I've had Sculptra injections in my face, but my arms and legs are still very noticeably veiny.

But why do some have some issues and others don't is simple. Every person's body is different, all of us with are on various drugs at different times for different periods in various combinations. Genetics come into play at least partially with something like lipo, etc.
"Iíve slept with enough men to know that Iím not gay"

Offline RWR

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Re: Long term Survivors
« Reply #8 on: June 27, 2012, 07:43:49 PM »
Thanks Buckmark.
Hiv+ 1986
Isentress
Truvada

Bobby

Offline RWR

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Re: Long term Survivors
« Reply #9 on: June 27, 2012, 08:01:51 PM »
I like seeing Your faces.  You have been in My room with Me alot.I am trying to put mine on.Got it to photobucket but when i try to put it on just a question mark.Im trying Mikie. ;D
Hiv+ 1986
Isentress
Truvada

Bobby

Offline denb45

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Re: Long term Survivors
« Reply #10 on: June 27, 2012, 08:22:39 PM »
RWR, I will echo what some of the other LTS have said about being on AZT  :)


headaches, smells, lipo, fatigue, sore joints and most of my body hair fell out, and never came back  ???

 was on AZT from AUG 87 to about 91 or 92 when zerit came out was put on DDI..

all  3 of them very awful stuff, made me PUKE a lotta, and as a result of this, I wasn't very adherent to any of those...

I don't look back on any of those DARK days of AIDS and some of the older Meds..

it was HOLLY HELL back then  for a lotta of us :-[
"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: Long term Survivors
« Reply #11 on: June 27, 2012, 08:48:45 PM »
was put on DDI.
I actually liked those big ol' chalky ddI tablets. ;D I used to crush them up, with a mortar and pestle, for Randy and mix them with various liquid to "cover" the taste. By the time I took them, I just put them in my mouth and crunched them up. Interestingly enough, I actually continued to take ddI until two yrs ago, although somewhere through the yrs it changed into a regular capsule called videx ec

It was the liquid Kaletra that I hated that made me not be adherent; however, what I really, really hated was that liquid norvir - ethanol-based it was truly vile medication that tasted like gasoline.

there are times thinking about the "old" medications, that I'm really amazed at how much they changed. Lower doses, easier to take. The changes in ddI and Norvir have been really astounding - not to mention that dosage of AZT being so radically changed.

Im trying Mikie. ;D
if you hover over the picture there at photobucket, a menu will show up. click where it says direct link, and it'll copy the URL to the pix.

then here at AM, click on USER over there on the left, then click on FORUM Profile. Click "Specify avatar by URL".  right click in the URL box, paste that URL. then click "change profile" at the bottom and your pix should show up.
leatherman (aka mIkIE)


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

Offline Dachshund

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Re: Long term Survivors
« Reply #12 on: June 27, 2012, 10:53:38 PM »
I took AZT for 9 months back in the very early 90s. Although it made me puke constantly, very anemic, and afraid I might die before my partner (who was much sicker at that time and in a clinical trial), I credit AZT with keeping me alive until better drugs (like ddI, zerit, kaletra, sustiva) came along.

I'm 50 now, been poz 27 years, and lived with AIDS for 20+ yrs.

this is the description from LTS sectionbeing a LTS is not so much about chronological age; but about when you lived and when you were diagnosed (and what treatment you might or might not have had). Most people who post in this section range from their 40s to their 70s. Although HIV itself can cause lipo and wasting, often those problems are side effects of some of the earliest meds (like zerit for one) that LTSs might have taken.

oh, and AIDS denialists are those who either claim that HIV does not lead to/cause AIDS and/or that don't believe that HAART is the only thing that stops HIV.

You tested poz in 85?

Offline Dachshund

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Re: Long term Survivors
« Reply #13 on: June 27, 2012, 11:02:42 PM »
I gave AZT a go in 90's and told my doctor I would rather die than continue taking it. Coincidentally I almost did die, twice. I've been infected so long I think I might be the real patient zero.
« Last Edit: June 27, 2012, 11:05:15 PM by Dachshund »

Offline Dachshund

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Re: Long term Survivors
« Reply #14 on: June 27, 2012, 11:03:41 PM »
*
« Last Edit: June 27, 2012, 11:06:30 PM by Dachshund »

Online Miss Philicia

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Re: Long term Survivors
« Reply #15 on: June 27, 2012, 11:41:40 PM »
ddi = videx, not zerit (approved late '91)

zerit wasn't approved until mid-1994
"Iíve slept with enough men to know that Iím not gay"

Offline aztecan

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Re: Long term Survivors
« Reply #16 on: June 28, 2012, 12:54:48 AM »
I took AZT for 13 years, along with 3TC (Epivir), first as two seperate meds and then as Combivir.

I have some of the lipoatrophy and lipohypertrophy, but it could have just as well come from the 11 years on Crixivan.

Back in the day, I would have swallowed battery acid if they said it would help.

I am now coming up on my anniversay of testing positive, more than 25 years.

HUGS,

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

Offline denb45

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Re: Long term Survivors
« Reply #17 on: June 28, 2012, 10:11:56 AM »
These are all of the HIV-Meds that I've been on since 87 all the way up to 2012
not sure if some of them are in chronological order, but, my guess is this is close enough....

25 years of treatment, 19 different medications.

Zidovudine (AZT)
Videx (ddI)
Epivir (3TC)
Zerit (d4T)
Viread
Hydrozyurea
Ziagen
Hivid (ddC)
Crixivan    
Sustiva
Viramune
Kaletra
Norvir
Viracept
Reyataz
Fuzeon
Isentress
APTIVUS
TRUVADA
"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: Long term Survivors
« Reply #18 on: June 28, 2012, 10:51:18 AM »
46 years old, living with this virus for 25 years and survived the AZT years.  I think it was the late 80's and I debated with each dose whether to stop taking it or not.  My ubber best childhood friend also was having issues with quality and quantity issues and he decided to stop taking it. 

Of all my AIDS deaths, his was the most horrifying for me and I continue to think of him daily.  I somehow managed the terrible issues of this treatment convinced something better was coming. 

OK, gotta stop thinking and typing or the funk will return. 

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

Offline LongTimeSurvivor

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Re: Long term Survivors
« Reply #19 on: June 29, 2012, 08:13:50 PM »
denb45...with that list you'd be killer at Scrabble...

Can't say anything about AZT or other early drugs. I was one of the ones who didn't seem to progress...even though mine is mixed since I am classified as having AIDS since I did develop Thrush around the time I tested positive. But it disappeared and nothing else happened.

I do know how sick my friends got who did take those meds. Losing weight, no energy, etc., was always afraid of when I'd have to go on them.

Of course it's important. It's an email...

Offline denb45

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Re: Long term Survivors
« Reply #20 on: June 29, 2012, 08:23:33 PM »
denb45...with that list you'd be killer at Scrabble...

Can't say anything about AZT or other early drugs. I was one of the ones who didn't seem to progress...even though mine is mixed since I am classified as having AIDS since I did develop Thrush around the time I tested positive. But it disappeared and nothing else happened.

I do know how sick my friends got who did take those meds. Losing weight, no energy, etc., was always afraid of when I'd have to go on them.

Dean.....lol  I didn't come down with full blown aids until 1997, that was when I had to stop working, then in FEB 1998 I got my ICD9 AIDS diagnosis, and then got my Teamsters Pension shortly after that date  ;)

so form 87 it took about 10  yrs before it turned into AIDS, around 97 or 98 .......

all of those early meds really did nothing to stop it, but only slowed it down.....
I was very lucky to have good Ins. and a very decent Job back then  :)
« Last Edit: June 29, 2012, 08:27:11 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline harleymc

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Re: Long term Survivors
« Reply #21 on: August 12, 2012, 03:19:46 AM »
My drugs list is almost as long as Denb's but he definitely wins.

When we look at the early use of AZT we do need to remember a few things that are never mentioned in  the "AZT = poison" meme.

  • The initial trials used much higher doses than later became standard prescription levels.

  • Early access to AZT was often for people who had multiple AIDS defining conditions in an era when treatment of opportunistic infections (OIs) and opportunistic cancers was very experimental and often ineffective.

  • AZT was introduced as a monotherapy (there was nothing else around) therefore its effectiveness was always going to be short-term.


I was one of the second wave to take AZT. My t-cells (CD4s) were a bit higher when I started and I had only minor OIs. It gave me a huge boost for about 8 or 9 months. I continued taking it for several years adding in ddI and ddc.

I really don't think I would have made it through without the extra time AZT bought for me.



Offline konkrypton

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Re: Long term Survivors
« Reply #22 on: August 13, 2012, 02:07:41 AM »
I not only took AZT, it prevented our apartment from getting burgled. Seriously. Back then they had us taking it around the clock, and I remember one night our alarm went off about 3am to take a dose. I think I heard a sound or something, anyway I stumbled, half asleep out into our living room and found the door wide open, the cats gone and the only thing missing was a cheap plastic wrist watch that was laying out on a table.

Whoever it was must have thought he'd been caught! I wish I could have seen his face! We found the cats cowering outside and brought them home and got a new lock put on the door by the landlord the next morning.

I'd forgotten that story. The things you remember...
KK
--
I distrust morning people. I suspect they setup the rules of life while the rest of us slept.

Offline Theyer

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Re: Long term Survivors
« Reply #23 on: August 14, 2012, 12:47:07 PM »
Yes I took it for awhile as a mono therapy way back when , only started having lypo problems when DDI was added to it.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Kris country

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Re: Long term Survivors
« Reply #24 on: August 17, 2012, 05:35:38 PM »
HI this is my first post
I am from New Zealand
I have been hiv+ since 1987 I was diagnosed april..
Dunno how many drugs or wot they were.. most are horrible..
I DO have nerve damage n my feet and hands now..makes it painful to walk and do stuff.....
I lasted 10 yrs til meds well 5 months off ten years....
I have had body fat displacement and the thickening back of the head but not too bad
my weight ballooned as well up to 100 kilos
ive never felt so crap as then,.... i jus wanted to die..
Im still here lost the weight...89 kilos now,, took a few yrs to get it off..
I never thought 25 yrs later Id still be here
all my friends have gone

I salute fellow long term survivors :)

 


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