POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: blk1888 on August 25, 2013, 10:41:23 am
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Hello,
I'm conducting some research concerning HIV, both for personal health and for data to be shared and interpreted by everyone.
Sincerely,
Blk1888
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Hi blk , if your poll is for discussion here on the forum its ok to post it . I assume since the only way to answer your poll is based on opinion that you do not intend on sharing it outside the forum . Poz.com requires prior approval to do research on the forum .
The answer to your question is how long can a long term non progressor maintain a healthy immune system or how long can a slow progressor go without meds ... all of which depends on the individuals responds to the HIV virus and its not a one size fits all kind of answer that you can put a number on accurately .
I have seen statistics that attempt to put a time line on aids progression but in the end it comes down to the individual .
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Hello Jeff,
Thank you for your reply. I guess to need to formerly request permission so that I can do this right. But I am interested in the answers that someone may give. I myself have been positive since '89 without meds, and I'm doing research on this before my clock runs out.
Sincerely,
Blk1888
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Hi Blk ... you will know when its time for treatment when your cd4 counts and viral load reach a certain threshold .
Are you getting regular labs done and what are your numbers ?
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Last checked: 584 cd4, viral no higher than 70 since testing for that factor, currently no viral load.
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Last checked: 584 cd4, viral no higher than 70 since testing for that factor, currently no viral load.
Im totally jealous of that , great work . You shared that you have been poz since 89 so my vote in your poll is over 20 years then . ;)
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I guess.
Five years ago, however, I paid closer attention to how many HIVers were around like myself. I decided that I needed to do real research in the hopes that it could mean something other than a medical anomaly.
I can use some help.
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Last checked: 584 cd4, viral no higher than 70 since testing for that factor, currently no viral load.
It sounds like you're what's known as a long-term non-progressor, or LTNP for short. Consistently having an undetectable viral load may mean you're actually an elite controller, meaning someone who can sustain an UD VL without meds.
Many people like you choose to enrol in studies that look at why some people can control hiv without meds, and others can't. There's hope that what is learned may contribute to an eventual cure.
You can read more about LTNPs and elite controllers at the Zephyr Foundation (http://www.zephyrfoundation.org/) website. It's run by a woman who used to post here and who is an elite controller, but I noticed she hasn't undated it recently. There's still some good information available there.
We have a few members here who are LTNPs and are also enrolled in a study. Unfortunately, we don't hear from them very often because they don't have problems with hiv, so their less likely to post. I think that may be what's happened to the Zephyr Foundation - she's busy living her life rather than worrying about hiv. But that's just a guess.
There are also people like me - I was a long-term slow-progressor. That means I always had a detectable viral load and eventually my CD4s started going down. I've only been on meds for just over a year now, but I went untreated for fifteen years. Because I kept an eye on my labs, I was able to start well before I started having serious issues.
Provided you keep an eye on your labs (which obviously means having them done quarterly or at least every six months), I don't think you should worry too much.
After all, the goal of treatment is to have and sustain an undetectable viral load, and as you're doing that on your own, why factor expensive meds into your life?
Just keep getting regular labs done and there's no reason to think anything untoward will happen to you.
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@Ann
At this point in my life I'm not so worried about my health or death, but about "why". I have a pretty good idea "how" I caught it - through sex. But I think it is just time for me to understand why my immune systems works the way it does, and whether or not the experiments I put myself through 24 years ago has anything to do with my longevity and HIV status.
Which means getting involved with a study, (only that for almost 8 years doctors did not have a study I could go into).
So for better or worse I'm hunting for this particular Holy Grail.
God, I'm thankful for Monty Python....
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@Ann
Took a peek at the Zephyr Foundation site, which last post was sometime between November 2010 and maybe January 2011(?). Will look into it further when I get sometime. At the moment, I have to get to work: those dishes at the restaurant are not going to wash themselves!
Thank you!
Eugene
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@Ann
Took a peek at the Zephyr Foundation site, which last post was sometime between November 2010 and maybe January 2011(?). Will look into it further when I get sometime. At the moment, I have to get to work: those dishes at the restaurant are not going to wash themselves!
Thank you!
Eugene
You're welcome, Eugene!
According to a "news" item posted there on July 11, 2013, they're working on a new site they hope to have up and running "soon", so it's one to watch.
You have to poke around a bit to find the relevant articles (they used to be more directly linked to on the front page), but you can find some here (http://www.zephyrfoundation.org/index.php?option=com_content&view=category&id=17:hiv&Itemid=8&layout=default) and here (http://www.zephyrfoundation.org/index.php?option=com_content&view=category&id=1:zephyr&Itemid=8&layout=default).
You may also have some luck by googling hiv + "elite controllers" for some basic information.
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Just to add my 2¢ worth, I am also a long-term slow progressor, like Ann.
I had the detectable viral load, but went 11 years without meds.
Like Ann said, if you keep on top of your numbers, there is no reason for you to suffer serious complications.
HUGS,
Mark
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blk1888 Eugene It is on time & refreshing to read your post .... especially since I am struggling with starting meds at the moment .... my cd4 as of about 2-3 months ago was about 773 .... and I was seemingly just infected last year I had an acute sero-conversion ---- got sick end of October 2012 they did HIV test while in hospital it came back negative ...I went back in Hospital end of December 2012 and they tested me again this time I tested positive on Jan 1, 2013 ---- my cd4 at that time was 473 ... But exactly a month later it was up to 1050 .... I believe it had dropped so low because they gave me flu shot, pneumonia vac, and tested me for TB a day or so before they did HIV test .... Though I am not undetectable my viral load has come down from 300,000 to 77,000 as of the last time 2-3 months ago -Well I got prescription filled on Thursday but have not began taking them tet .... I will if I have to take them but I am at least gonna be patient and wait my most recent lab results to return this week first and then make my decision as to how I will proceed
I Appreciate all of you who shared with this post and everyone who shared their personal stories here because it did give me some hope -- I may not be a LTNP or a LTSP but neither do I want to assume that I am neither without giving it some time .... One thing for since being diagnosed I am more focused on my HEALTH than ever before in my life ;-) Finally I am concerned about ME
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Hi Realone ... this particular forum is for pre-haart long term survivors that were diagnosed before 1996 . I know you didn't realize and meant the best , so no harm done . Thanks Jeff .
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I'm still confused as to the poll. Are you trying to garner how long it took each of us personally to need meds or our beliefs on that issue? Even if 50 people took the poll, what conclusions would that help you achieve?
The data could also be skewed as some of us can never truly now the date of infection prior to readily available testing. I had AIDS within 3 years of probable infection, or could it have been that I actually got infected years earlier? There's data on LTNP but it might not be relevant unless you're truly lucky enough to be in that category.
Not a criticism, just not understanding what you hope to answer.
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Hello Wolfter,
Understood.
I'm looking for timelines as far as the personal know a respondent has, including their subjective observations.
I have some theories concerning my own status.
It is hard for me to explain, but I think subjectively and objectively knowing when one is infected gives the patient a greater chance of survival.
The question isn't about meds, but how long a patient believes or know about initial infection and symptoms.
I hope this helps you understand where I'm coming from.
- Eugene
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how many HIVers were around like myself.
see the newest Sept 2013 POZ magazine article "older and wiser" page 28 and learn there's only about 50k people infected in the 80s who are still around.
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see the newest Sept 2013 POZ magazine article "older and wiser" page 28 and learn there's only about 50k people infected in the 80s who are still around.
I haven't read the article yet. Thanks for the heads up.
50K? Really? I never thought about an actual number. It gives me pause (poz) for thought.
I've been wrapped up in my own world about it so long, it's refreshing -- if that's the right word -- to tap into these forums for perspective on being a LTS.
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I haven't read the article yet. Thanks for the heads up.
50K? Really? I never thought about an actual number. It gives me pause (poz) for thought.
I've been wrapped up in my own world about it so long, it's refreshing -- if that's the right word -- to tap into these forums for perspective on being a LTS.
Ya. I always suspected that I am one of about 2000-4000 on the planet alive living today for so long. (assuming the estimate is about right.)
(infected in Oct. 1982)
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Just read the article. Great stuff and very validating. Thanks for pointing me to it!
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I'll have to go read the article. I usually wait til my doctor's appointments as I enjoy reading it in his lobby that is shared by the infusion clinic. It stops all those old smelly people from wanting to talk to me.... lol
That just seems awfully low but is probably so as I don't know another person from my younger days who is still around. We never had a gay per se, but we had a common bar in a neighboring town that we all hung out in. It was super crowded as it was the only place for miles around.
It got too depressing to continue to hang out there after being diagnosed as it was even tough to hear that acquaintances were passing. It seemed nightly, we heard of another one. OH, and it eventually became a lesbian club. :o
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Ya. I always suspected that I am one of about 2000-4000 on the planet alive living today for so long.
I always thought it was a smaller number too. I think that is probably because, as we see here, LTSes are kinda spread thin. 50k isn't a very big number when you think that is only 1000 per state. (oh, I know that number is make believe and doesn't work out right when you think about how the amount of LTS pozzie in Cali and in say Idaho are distributed; but it is a way of looking at the number)
i do have some questions about Dr Perry Halkitis' work that my friend google isn't answering. Is that 50k based on the criteria that he used in his book? Meaning are those remaining 50k the people who were infected in the decade of 1983 to 1994? If so that makes this number even crazier to imagine. Think about it. Out of a decade's worth of infections during the peak of the epidemic there are only 50,000 left scattered about America. that's incredible and it's no wonder many of us LTSes deal with loneliness, depression and other issues.
and finally, there's one other bit of craziness to point out about this number. While there may only be 50k people still alive from the decade of 83 to 94, for the last decade of 2004 to 2014, the infection rate has plateaued at 50K. ---- Cue the Twilight Zone music.
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and to break it down even further, that equates to an average of only 16 pozzies per county. :(
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Well, I always wanted to be a rare breed. :-)
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Well, I always wanted to be a rare breed. :-)
I have succeeded in being rarely bred .
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I have succeeded in being rarely bred .
Zing! Ba-dum-bum.
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@aztecan
Thanks!
BTW your "2 cents" has great worth.
I have a question for everyone, if your among that special 50k from the 80's, and you haven't taken any meds to the present moment, wouldn't you be curious as to how?
My first five years POZ I was totally focused on survival.
It's my 24th year and I'd like to answer that question.
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And to everyone, thank you, because it's serious.
I do not know how to put in words what's going on with from my prospective, and from my questions and observations from doctors to other POZ, I found driven to speak out, and listen.
Question: Of the 50,000 infected from '83 to '94, how many of them survived without any medications?
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Question: Of the 50,000 infected from '83 to '94, how many of them survived without any medications?
interesting question. what's 1% of this 1%? LOL
As a guess, knowing a couple two or three handfuls of peeps** in that 50k and none of them who isn't on meds, I'm going to say >150.
(hey! there's another poll question LOL)
** holler out to all my peeps at the AU Convening and/or US AIDS Conference in New Orleans this week. My plane heads down in an hour. Us SC Boys are all going try to meet up in the Quarter tonight. FB me! LOL
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@leatherman
Thanks man, but you see why I'd need a survey. Can't post it here, but I'll figure it out.