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Author Topic: Early Aging -- New York magazine article  (Read 22756 times)

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Offline Assurbanipal

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Early Aging -- New York magazine article
« on: November 02, 2009, 01:30:21 PM »
Powerful discussion of medical problems affecting people with HIV as they hit their 40's and 50's in the current issue of New York magazine.   The article (but not the picture captions) tries to tease apart the issues related to aging vs. duration on medications and other factors.


Another Kind of AIDS Crisis
A striking number of HIV patients are living longer but getting older faster—showing early signs of dementia and bone weakness usually seen in the elderly.


...

But in the last year or so, doctors have been troubled by the emergence of a new kind of AIDS story. Take the case of James L., 46. After testing positive in 2001, he went on a drug cocktail and life returned to normal with little effort. His exercise regime only intensified. He even went back to school for a master’s degree. At work, he rose to a six-figure position at a telecommunications firm, and his personal life flourished. He was, he told me, “a regular gay male.”

Then, halfway through a screening of the film Syriana in his local cinema, he had a disturbing revelation. “He sat through about half the movie before he realized suddenly that he had seen the same movie two weeks earlier,” says Simpson. Indeed, James ultimately pieced together evidence suggesting he’d seen the film on three separate occasions. The same problem haunted him at work. Where he had once earned praise for his organizational skills, he now drew warnings. He seemed incapable of recalling recent events with any reliability. “It’s an Alzheimer’s-like state,” he explains. Earlier this year, Simpson diagnosed him with HIV-associated cognitive motor disorder.

...

Some fifteen years into the era of protease inhibitors and drug cocktails, doctors are realizing that the miracles the drugs promised are not necessarily a lasting solution to the disease. Most news accounts today call HIV a chronic, manageable disease. But patients who contracted the virus just a few years back are showing signs of what’s being called premature or accelerated aging. Early senility turns out to be an increasingly common problem, though not nearly as extreme as James’s in every case. One large-scale multi-city study released its latest findings this summer that over half of the HIV-positive population is suffering some form of cognitive impairment. Doctors are also reporting a constellation of ailments in middle-aged patients that are more typically seen at geriatric practices, in patients 80 and older. They range from bone loss to organ failure to arthritis. Making matters worse, HIV patients are registering higher rates of insulin resistance and cholesterol imbalances, and they suffer elevated rates of melanoma and kidney cancers and seven times the rate of other non-HIV-related cancers.


http://nymag.com/health/features/61740/
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline GSOgymrat

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Re: Early Aging -- New York magazine article
« Reply #1 on: November 02, 2009, 02:41:24 PM »
Very interesting. Thanks for posting it.

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #2 on: November 02, 2009, 02:49:09 PM »
Oh wow.  One of the guys in those pictures is in my local support group and he'd not mentioned this when I saw him just a few weeks ago.  Interesting.  I'm also skeptical about the age he listed but I'll let that one go.
« Last Edit: November 02, 2009, 02:51:00 PM by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Online mecch

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Re: Early Aging -- New York magazine article
« Reply #3 on: November 02, 2009, 06:05:07 PM »
Yes. And no.
And does the article mention other lifestyle factors in that gay man's life?
This kind of alarmism makes me think of the multi drug-resistant fast progression to AIDS HIV strain a few years back.  Which was all about many things except multi-resistant HIV
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline GNYC09

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Re: Early Aging -- New York magazine article
« Reply #4 on: November 02, 2009, 06:10:14 PM »
I tend to agree with Mecch - this article seems more alarmist than anything else.  It's an interesting article but some of the problems they point out--like lipo--aren't examples of "advanced aging."  Also, just to be superficial for a moment, a lot of the folks pictured look younger than their age. 

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #5 on: November 02, 2009, 06:17:36 PM »
I'll be sure and let my 52 year old LTS friend that just had his second heart attack in 10 months that he's being alarmist about the contribution of 20 years of HIV medication on his body.
"I’ve slept with enough men to know that I’m not gay"

Online mecch

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Re: Early Aging -- New York magazine article
« Reply #6 on: November 02, 2009, 06:30:21 PM »
Noone denies that. But the poster child of the article started HAART in 2001. And no mention of his numbers or time of infection.
My point is that HIV AIDS is incredible diverse so lets just say so, rather than inventing a "New AIDS Crisis".  This article is about LTS.  Just spell it out.  Its not going to help in a push to test all of the Bronx or Washington DC to be fear mongering about a set of the HIV population and its experiences.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #7 on: November 02, 2009, 06:45:32 PM »
Sure, if you don't plan on ever being a long term survivor yourself then I guess you have nothing to worry about as regards the subjects raised in this article. 
"I’ve slept with enough men to know that I’m not gay"

Offline next2u

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Re: Early Aging -- New York magazine article
« Reply #8 on: November 02, 2009, 07:12:00 PM »
dude, my memory is on a fast track down the drain. i try not worry about it but i am reminded on a daily basis that something's not the way it was...
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Ann

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Re: Early Aging -- New York magazine article
« Reply #9 on: November 02, 2009, 07:14:30 PM »
Philly, I was just about to say the same thing in response to Mecch. I have to wonder how he'll be feeling 20 years down the line - or if he's planning on leaving this veil of tears in another year or two. ::) The meds today are better, sure, but we still don't know what their effects will be after years of use. We do know that years of having hiv, medicated or not, plays havoc with the body. Scaremongering? Alarmist? How about realistic?

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

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

Offline next2u

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Re: Early Aging -- New York magazine article
« Reply #10 on: November 02, 2009, 07:18:45 PM »
that video was depressing/disturbing
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline next2u

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Re: Early Aging -- New York magazine article
« Reply #11 on: November 02, 2009, 07:21:50 PM »
realistic?

do all the old schoolers have something else because of the meds? the majority of my old poz queens have gone through some shit but they came out on top. and there is a list of ailments they can run down when required.

fuck, i definitely didn't need to see that today. ignorance im down for some denial/ignorant bliss right about now. 
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Ann

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Re: Early Aging -- New York magazine article
« Reply #12 on: November 02, 2009, 07:50:25 PM »
Next, did you not hear the guy who said (and I'm paraphrasing) that doctors just don't know how much of the ailments and apparently accelerated ageing is down to hiv and how much of it is down to the meds? I'm willing to bet it's a combination of the two. I've been poz for twleve and a half years, no meds, and the longer I'm poz, the more I see changes that can't all be down to the natural ageing process. In fact, I'm going to be talking to my doc about this very thing tomorrow.

We have to remember that the people in this article and video have been poz for twenty-odd years. It's bound to take a toll, regardless of what meds one has taken or not taken. After all, the meds don't totally eliminate the virus, they just keep it down to a dull roar. It's still there though, doing damage. It is what it is, you know? I'm just thankful I'm here now. I try to live in the moment as much as I can and I find it's a great place to be. Why worry about the future when it hasn't happened yet and why worry about the past when it's over and done with?

Be here now. (but look up to the future now and then so you don't stumble into too many potholes!) ;D

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...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 bocker3

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Re: Early Aging -- New York magazine article
« Reply #13 on: November 02, 2009, 08:05:23 PM »
I try to live in the moment as much as I can and I find it's a great place to be. Why worry about the future when it hasn't happened yet and why worry about the past when it's over and done with?

Be here now. (but look up to the future now and then so you don't stumble into too many potholes!) ;D

Ann -

Words to live by and worth repeating.

You know, many years ago, as I started my sobriety, a very wise man told me the following (due to my struggle with guilt over the past and constant worry about the future):

"If you keep one foot planted in yesterday and your other footed planted in tomorrow, you end up pissing all over today."

Not sure why this has stuck so firmly in my head after 20 years, but it has helped me get over so much unnecessary worry and guilt -- including around my HIV.

Of course, this doesn't mean that you stick your head in the sand and ignore things.  Looking ahead is very good, it's projecting the outcome of the future that is wasteful.

Mike
Atripla - Started 12/05
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Offline Assurbanipal

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Re: Early Aging -- New York magazine article
« Reply #14 on: November 02, 2009, 09:38:11 PM »
Noone denies that. But the poster child of the article started HAART in 2001. And no mention of his numbers or time of infection.
My point is that HIV AIDS is incredible diverse so lets just say so, rather than inventing a "New AIDS Crisis".  This article is about LTS.  Just spell it out.  Its not going to help in a push to test all of the Bronx or Washington DC to be fear mongering about a set of the HIV population and its experiences.

Mecch
The article is not solely about LTS but rather about the interaction of HIV, aging and the events that people lived through.  Teasing these issues apart is difficult to do, but likely important to each of us personally, whether or not we are long term survivors.

The first person in the story was diagnosed in 2001, not decades ago. 

And... bringing it to the personal level ... let me say that I identified with aspects of this story directly.  After all, I was diagnosed in 2006, infected for perhaps a decade or so, yet according to my DEXA scan results have the spinal bone density of the average 95 year old woman.  I'm glad I found out by breaking a wrist (like one of the people in the story) instead of my spine, skull or hip.



Lastly, let me say something to those of you who have characterized this article as alarmist.

  Granted the article does not do a perfect job of separating out what is due to age, to duration of HIV infection, to the stress of surviving a plague that killed friends and lovers, to stigma, to early overdosing of AZT, etc.  Much of that is work yet to be done on the scientific front. 

  But if you think that you have no greater risk of death and illness you are living in a dream world.  Things are much better than they were.  People who are diagnosed and treated soon after infection can have near normal life expectancy.

Yet there is NO study that shows a fully normal life expectancy, NO study that shows normal morbidity.

  Zero. 

Doctors who suggest that everything will be normal base that suggestion on hope.  Hope that medicine will continue to improve.  Hope is not science.

Hope is important to all of us.  It certainly not realistic to assume that the life chances of someone diagnosed today are as bad as they were in the past.  But if you want to live a long and healthy life, managing the risks to your health based on a realistic view of the current science is likely to be a better strategy.

A

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Nestor

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Re: Early Aging -- New York magazine article
« Reply #15 on: November 02, 2009, 10:22:51 PM »
The article says:

"In a dramatic move last week, the National Institute of Allergy and Infectious Diseases upped the ante even further by announcing a massive new plan to test virtually every single adult in the Bronx and the District of Columbia—homes to some of the highest rates of infection in the country—and put everybody who tests positive on anti-HIV drugs, whether they have depleted T-cell counts or not."

Are they planning to do this testing and putting people on drugs with or without their consent?  That's sort of what it sounds like.....
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline skeebo1969

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Re: Early Aging -- New York magazine article
« Reply #16 on: November 02, 2009, 10:52:26 PM »


   In my own experience I would have to side with the article.  I'm only 40 years of age and was relatively always in good shape.  Since becoming positive I have seen many changes in myself that can be attributed to the virus and/or medications. 

   Probably the one thing I dread losing is the ability to just enjoy life...  I guess that entails a lot though.
I despise the song Love is in the Air, you should too.

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #17 on: November 02, 2009, 11:50:06 PM »
The article says:

"In a dramatic move last week, the National Institute of Allergy and Infectious Diseases upped the ante even further by announcing a massive new plan to test virtually every single adult in the Bronx and the District of Columbia—homes to some of the highest rates of infection in the country—and put everybody who tests positive on anti-HIV drugs, whether they have depleted T-cell counts or not."

Are they planning to do this testing and putting people on drugs with or without their consent?  That's sort of what it sounds like.....

Oh please -- like they're going to get all those uppity white folks in those pricey Georgetown homes to line up for HIV tests and baggies of Norvir.
"I’ve slept with enough men to know that I’m not gay"

Offline edfu

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Re: Early Aging -- New York magazine article
« Reply #18 on: November 03, 2009, 12:41:38 AM »
If you're a long-term survivor and wish to comment on this article but do not wish to encounter or encourage the negative comments from those who are not experiencing the effects described in the article, I've also posted the article in the "Long-Term Survivors" forum, where only long-term survivors should be posting: 

http://forums.poz.com/index.php?topic=29712.0

I don't know how many of you know of, or know, the indefatigable Jules Levin, but the take-away quote from the article for me is his: 

"Aging is the No. 1 problem in HIV today."
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline elf

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Re: Early Aging -- New York magazine article
« Reply #19 on: November 03, 2009, 01:20:38 AM »
Some things can be prevented: dementia by constant learning, bone density loss by taking calcium supplements...

 :-\ But I'm scared of cancer and heart attack... :-\

Offline MitchMiller

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Re: Early Aging -- New York magazine article
« Reply #20 on: November 03, 2009, 02:31:00 AM »
I didn't read the article, but I do believe the meds have long-term consequences.  For that reason, anyone on meds should be taking steps to minimize their risk to heart attack (diet, exercise), cancer (diet, exercise, sunscreens), bone loss (diet, weight resistance training), dementia (diet, cardio).
I'm a believer that Sustiva is behind some of the memory loss so many complain about.  Nearly half of all HIV'ers in the first world take Sustiva.  Who knows the long term consequences of this drug on the brain.  It's like taking 1/4 hit of LSD every night... can't be good for you.

Online mecch

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Re: Early Aging -- New York magazine article
« Reply #21 on: November 03, 2009, 05:04:36 AM »
The first person in the story was diagnosed in 2001, not decades ago.  

That is exactly the point I raised. Tested positive 2001.  But it is not reported how long he was infected and since he went right on drugs in 2001 we can assume for some time.

The article mentions recently infected people once or twice, but gives NO details about our experiences.

"But patients who contracted the virus just a few years back are showing signs of what's being called premature or accelerated aging."  - No details here.

Its an informative article.  I'm just observing that it is about LTS.  And it tries to cover too much - because it discusses the Bronx and DC plans.  And there are two rationales working on those:  1) treatment is prevention and 2) moving back to direct treatment at any stage of diagnosis.  

So I join with the "retards" commenting in the New York comments section - if you want to make a persuasive case for people to be routinely tested, and indeed for an entire population to be tested and treated, then tell the whole story.  I join the retarded commentor and suggest the "happy outcome" "normal life" narrative would be more productive.

Which is not to say this article lies.  Or that these experiences are not true, for these people.

Also, if you read just one expert quoted in the article, you'll see what I'm getting at:

"But Morgello is investigating something that's both more surprising and less so: The inflammation might be caused as much by the patient’s emotional and psychiatric burden as the virus’s pathological course. “We have screamingly high rates of major depressive disorders, substance abuse and dependency, and post-traumatic-stress disorder,” she says of the Brain Bank donors. “About 40 percent of our patients have major depressive disorders when they come to the study. Substance abuse and dependency, that’s a continually moving target, but when we run urine toxicologies, about 30 percent contain illicit substances,” she says. These multiple “insults to the brain” are enough to cause the entire upswing in dementias, she says. But she admits she’s only speculating. “I wouldn’t even say we have 50 percent of the answer here,” she says."

I see a continuous and regrettable inconsistency in this forum.  People are told that the prognosis is pretty damn good if an infection is caught early and treated at proper time.  I'm willing to bet most of the countries willing to shell out for the meds will be offerring treatment to everyone regardless of stage of infection. As I have said, in Geneva, ALL diagnosed people are routinely offerred treatment. Doesn't matter if it is 1 month or 10 years.

If you don't want to include all the stories of all the experiences of people living with HIV, fine, but no reason to call some a retard, me or anyone else who has received quite a different prognosis from doctors than the people reported in the New York article.  Their experience is TRUE.  No one denies. But it is not the only experience, and time will tell.


  

« Last Edit: November 03, 2009, 05:08:47 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Assurbanipal

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Re: Early Aging -- New York magazine article
« Reply #22 on: November 03, 2009, 07:01:57 AM »
Some things can be prevented: dementia by constant learning, bone density loss by taking calcium supplements...


It would be interesting to see some studies that show this in HIV-infected individuals. 

For bone loss, everything I have seen fingers HIV, testosterone and vitamin D levels -- you can take all the calcium you like but if you don't have enough vitamin D in your blood you will not absorb it and will merely have increased the amount of calcium in your piss. 

And as far as dementia goes it would appear unlikely that the guy in the article who had a career in scientific research and went back to grad school had given up on continuous learning...

That's not to suggest you give up hope on these issues.  We live in a time of great hope for continually improving treatment.  Instead it is suggesting that instead of self diagnosis and self treatment you monitor these issues with a doctor.



5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Nestor

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Re: Early Aging -- New York magazine article
« Reply #23 on: November 03, 2009, 08:15:30 AM »

"Some things can be prevented: dementia by constant learning..."

I would love to believe that, but to be honest that article terrified me for a very specific reason: the two examples it gave of people who succumbed to severe dementia were mentally active up to the moment of sudden collapse.  James L. had gotten a master's degree some time after 2001 and then a presumably demanding job; Donald was in law school and three weeks away from his degree.  Surely they were "constantly learning"?  And they don't appear to have been abusing drugs, or massively depressed, which are the things to which Dr. Margello attributed a lot of the dementia. 

For me, the most important new information in the whole article is the following: 

"most people who showed signs of dementia while alive do not have evidence of HIV in their autopsied brain. What they do have in common, she says, is evidence of persistent inflammation, which alone could account for the cognitive damage....The inflammation might be caused as much by the patient’s emotional and psychiatric burden as the virus’s pathological course."

In other words, perhaps the single most important thing I or anyone with HIV could be doing right now is reading up on ways to fight "inflammation"?  I also see different foods and supplements praised for "anti-inflammatory" properties, and never really knowing what that meant I ignored it; now I'll pay attention.



Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Online mecch

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Re: Early Aging -- New York magazine article
« Reply #24 on: November 03, 2009, 08:36:26 AM »
The test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function. --F. Scott Fitzgerald

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Early Aging -- New York magazine article
« Reply #25 on: November 03, 2009, 09:01:15 AM »

I see a continuous and regrettable inconsistency in this forum.  People are told that the prognosis is pretty damn good if an infection is caught early and treated at proper time.  I'm willing to bet most of the countries willing to shell out for the meds will be offerring treatment to everyone regardless of stage of infection. As I have said, in Geneva, ALL diagnosed people are routinely offerred treatment. Doesn't matter if it is 1 month or 10 years.


Where's the inconsistency? The prognosis IS pretty damned good when you compare it to 15-20 years ago when people were told they'd better get their affairs in order because they'd be dead within 6-18 months. Just because the prognosis is MUCH better doesn't mean it's perfect.

Here in the UK, treatment is only offered when your numbers indicate a need. At least at my clinic, under my doctor.

And ignorance still isn't bliss. We need to get more people to test more often. It's the only way to slow this juggernaught down.

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

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 mecch

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Re: Early Aging -- New York magazine article
« Reply #26 on: November 03, 2009, 09:18:41 AM »
Where's the inconsistency?

Because many people in this forum know the different prognosis and different experiences. And yet when a person who is not a LTS comments on anything that touches LTS issues and experience, she/he is dumped on for painting too rosey a picture.

It works both ways.  You don't want our two cents, post it in LTS and not here.

Since its all conjecture, entertain in your mind overall good as well as negative outcomes of long-term infection, just as the doctors and researchers are doing now.

Maybe its a relatively rosey picture for some, and not for others.  Many factors involved.

You want this:  "We need to get more people to test more often."

Tell them what my doc says - normal life. Inconvenient and expensive, life-time medical surveillance and treatment.  
Or tell them what this article says:  Come get tested. If you are positive, we will give you drugs that will keep you alive but you'll degenerate long before your "normal" time into an old, incapable, handicapped person. Best we can offer.

Or maybe tell them the truth, which could be either experience. Correct???
« Last Edit: November 03, 2009, 09:25:25 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #27 on: November 03, 2009, 09:24:38 AM »
sigh
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Offline Inchlingblue

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Re: Early Aging -- New York magazine article
« Reply #28 on: November 03, 2009, 10:25:27 AM »

I don't know how many of you know of, or know, the indefatigable Jules Levin, but the take-away quote from the article for me is his:  

"Aging is the No. 1 problem in HIV today."

I appreciate an intelligent account about HIV and aging but I find this article to be alarmist and it contains inaccuracies. This is to be expected from any article about a serious subject covered by a mainstream popular magazine (as opposed to, say, a scientific journal).

If anyone wants a clearer picture of the latest knowledge about HIV and aging, I recommend digging deeper than an article in New York magazine. Not everyone has the inclination to slog through a scientific journal but there are excellent sources online that present the latest research intelligently and cogently. One good place to start would be the website that Jules Levin regularly writes for, the National AIDS Treatment Advocacy Project (www.natap.org).

 I've been poz for twleve and a half years, no meds, and the longer I'm poz, the more I see changes that can't all be down to the natural ageing process. In fact, I'm going to be talking to my doc about this very thing tomorrow.
 

Ann, having been able to thrive as long as you have without meds, I think your experience is so valuable.

One of the biggest challenges in understanding the effects of HIV on our bodies is the lack of information that would help tease out what is attributable to HIV and what is attributable to the meds.

Having said that, I was hoping you could share with the forum what specifically are the changes you're noticing that you can't attribute to natural aging? Inquiring minds want to know! :)

« Last Edit: November 03, 2009, 11:18:27 AM by Inchlingblue »

Offline elf

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Re: Early Aging -- New York magazine article
« Reply #29 on: November 03, 2009, 11:10:39 AM »
Some recent findings:


HIV and antiretroviral therapy: Impact on the central nervous system.
http://www.ncbi.nlm.nih.gov/pubmed/19857545?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1

CNS Inflammation and Macrophage/Microglial Biology Associated with HIV-1 Infection
http://www.ncbi.nlm.nih.gov/pubmed/19768553?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=5

Good Neurocognitive Performance Measured by the International HIV Dementia Scale in Early HIV-1 Infection.
http://www.ncbi.nlm.nih.gov/pubmed/19641870?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=19

Resting cerebral blood flow: a potential biomarker of the effects of HIV in the brain.
http://www.ncbi.nlm.nih.gov/pubmed/19720977?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=9

The role of alcohol on platelets, thymus and cognitive performance among HIV-infected subjects: are they related?
http://www.ncbi.nlm.nih.gov/pubmed/19459132?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=48



4-Aminopyridine improves spatial memory in a murine model of HIV-1 encephalitis.
http://www.ncbi.nlm.nih.gov/pubmed/19462247?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=46


Offline Assurbanipal

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Re: Early Aging -- New York magazine article
« Reply #30 on: November 03, 2009, 11:33:59 AM »
...to be honest that article terrified me for a very specific reason: the two examples it gave of people who succumbed to severe dementia were mentally active up to the moment of sudden collapse.  James L. had gotten a master's degree some time after 2001 and then a presumably demanding job; Donald was in law school and three weeks away from his degree.  Surely they were "constantly learning"?  And they don't appear to have been abusing drugs, or massively depressed, which are the things to which Dr. Margello attributed a lot of the dementia. 

Me too.  This not being a great time to go back into the job market, I've been thinking about returning to grad school and finishing up.  It would be a little awkward being a student again, espeically since the people I would want to work with are colleagues and we have published and even been on various scholarly panels together.  Still I'd been moving that direction, even invested in one of those GRE prep books, since my prior GRE's are almost 30 years ago (aging is good, I guess, but it sure goes fast  ;) )  And after the elections, I figured I would call and set up appointments and do up the app.  But this is pretty scary, both these guys sounded in some ways very similar, but perhaps infected another 5 or 10 years. 

Still, as Ann has pointed out, all we have is now. 





(

The test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function. --F. Scott Fitzgerald



Off topic, but every time I see this quote I wonder why on earth anyone would choose to quote F. Scott Fitzgerald on "the ability to function".  Have they never read his bio?  or Tender is the Night ?  No personal attack intended here Mecch, it's just that some authors as authorities on some topics . . . ??? 

(No doubt the inability to stay on topic reveals something dreadful about my current mental function  ::)






  )

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Joe K

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Re: Early Aging -- New York magazine article
« Reply #31 on: November 03, 2009, 11:35:09 AM »
Interesting article, but it does not mention the fact, that people who tested decades ago, did not have drugs that were reliable for reversing bad numbers.  For most of us, we tried all sorts of drugs to control our infection and it could be years before you saw any real improvement.  Granted, you were still alive, so that was good, however, exactly how much damage was done to our immune systems, while those drugs tried to gain the upper hand, will never be known.

I believe the main issues in regards to aging with HIV are, the effects of the virus itself, effects of medications and the timing of beginning treatment.  Yes natural aging is in there, but I find it hard to differentiate between aging and the virus, when I am falling apart at an accelerating rate.  It seems to me that we need to study the effects of these issues, but for different subsets of the HIV community.  For someone who is 25 years poz, those issues are vastly different from someone who has been poz for 5 or ten years.

I believe that the more accurate we can be, in describing issues that affect us, while keeping them in perspective and recognizing that there will never be "cookie cutter" guides to HIV infection.

One last point.  I know that some of you, think us dinosaurs are too quick to point out that living with HIV can be a real challenge.  Or that we tend to be very skeptical about claims that living with HIV, is now just a chronic illness and you can medicate your way to a bright future.  It is not that we do not share those hopes and dreams, it is because we have lived a very different reality.

I have been HIV poz for 25 years now and I still lose at least one person, each year, to HIV.  At the AMG memorial service I commented that I had lost so many people, that it equated to my losing someone, each and every month, for the past 25 years.  Over 300 people for me and I can assure you the numbers are in the hundreds, for all the other LTSers here.  It is not that we cannot embrace a new future of HIV treatment, it is that we come from a very different time and the only thing that we all share as a constant in our life, is the fact that HIV can and does kill.

So if our responses, seem tempered at times, please remember that we have seen people, who did everything right and yet, they died.  We have watched those who do nothing positive for themselves and yet, they live.  We have stood by those, who chose to forgo treatment and helped to usher them to their final resting.  We have witnessed so much, in regards to the reality of HIV, that, at least for me, I feel I have somewhat a duty to remind folks that HIV is a deadly disease, that if left untreated, will surely kill you.  While I try not to preach, I know the reality of living with HIV for me and if I share that history and it makes a few people uneasy, they need to try and see it, from my perspective.

Just as many of your experiences, will be very different in another 20 years, that is where us LTSers find ourselves today.  Fortunately, most of you will never experience what we did, the carnage and feelings of utter hopelessness.  However, please remember that we did experience what we did and that fact alone is what colors so much, of how we see HIV in context.  We don't begrudge this new era in treating HIV and hopefully it will become a chronic illness some day.  Until then, it is wise to remember that the only real constant with HIV, is the fact that it kills.  All the other stuff, is unique for each of us, however, sometimes you need a cold slap in the face, just to keep you on your toes.

Offline Ann

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Re: Early Aging -- New York magazine article
« Reply #32 on: November 03, 2009, 12:11:02 PM »

Ann, having been able to thrive as long as you have without meds, I think your experience is so valuable.

One of the biggest challenges in understanding the effects of HIV on our bodies is the lack of information that would help tease out what is attributable to HIV and what is attributable to the meds.

Having said that, I was hoping you could share with the forum what specifically are the changes you're noticing that you can't attribute to natural aging? Inquiring minds want to know! :)


I actually planned on doing exactly that, in a new thread. I'm writing this post from Liverpool where earlier today I had a very interesting discussion with The Wizard of Poz. Right now I'm in a cafe waiting for the taxi to take me to the airport and I'm absolutely knackered, so I'll write tomorrow. (I've been up since 4am, it's just gone 5pm now, and I won't be home until nearly 9pm - if the plane lands on time at 8:30pm) ::) :o

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

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

Offline leatherman

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Re: Early Aging -- New York magazine article
« Reply #33 on: November 03, 2009, 12:34:03 PM »
dementia by constant learning
My  grandfather, and many others like him,  who lost their mental facilities to alzheimers would love to believe that; but it's just not true. Sure there are things like diet and mental exercises that can help (my 92 yr old grandmother does the crossword puzzles in the paper every morning under the idea that is why she hasn't developed alzheimers - when actually it's not contagious but genetic); but "learning" or mental exercising, just like physical exercising,  is no guarantee of keeping away all health problems.
Some recent findings:
those reports seem to recommend that HIV does cause negative cognitive effects, and a possible solution could be chemical medication rather that "constant learning".  ::)  ;D


Tell them what my doc says - normal life. Inconvenient and expensive, life-time medical surveillance and treatment.
Without a crystal ball however, the doctor that tells you that quite frankly is lying. There is NO data to tell what the long-term consequences of taking these meds are, because no one has been on the meds long enough to give that data. Doctors are not gods nor do they have the power of foresight. They can only give educated guesses on your possible future. (Thankfully the three doctors that have predicted my death weren't very clairvoyant) However, this article and others are bringing to light the data doctors are still learning, and that seems to be that the consequences aren't always that "normal life" after all.


We don't begrudge this new era in treating HIV and hopefully it will become a chronic illness some day.  Until then, it is wise to remember that the only real constant with HIV, is the fact that it kills.
Goodness, it's either great minds thinking alike or hiv-deranged minds thinking alike. ;D I had written up a similar post in content (and in length ::)); but just hadn't gotten around to posting it as the responses have poured into the recent threads about this topic. However, I'll pull out these couple of paragraphs to add to your response.

All the treatments for this virus are still "new". There are no long term studies of either AZT, Atripla, Norvir or anything, because we are all still the guinea pigs producing the data. (LTSs have just been guinea pigs with a wider variety of meds and for much longer LOL) No doctor ever told me how any of these meds might destroy my life in 10, 15, or 20 yrs, because there was no information on that. They only told me that the meds had been shown to keep me alive "maybe" 5-20 yrs longer. After all the scientific articles I've read about HIV/AIDS and the meds over all these years, I'd be a little distrustful of a doctor that guaranteed me a "normal" life or lifespan. (Cause if they knew those sorts of answers from their crystal ball, they sure could have warned me about what was happening to Jim. I would have never let him stay to go through that hell in the hospital for 60 days before dying anyway - which sure was proof that untreated HIV/AIDS is still a terminal disease :'( ). However, I've often wondered just what shape I'll be in by the time a cure does come. I sure hope it comes before I lose my cognitive skills, my ability to walk, my eyesight, etc. But no doctor has ever guaranteed that either. All my doctors have offered is the hope that these meds will keep me alive long enough, and hopefully well enough, as each day is a day closer to a cure.

(If you'll allow me to paraphrase one line ;) )
living with HIV is now just a chronic illness and you can medicate your way to a bright future.
If your doctor told you that you'll be having a perfect life in 20-30 years from going onto your meds, well, that's excellent and more power to you. ;) (No one has ever yet lived to be 80 on Atripla for 40 yrs so I don't know that I would believe a doctor that suggested that to me.) I've seen enough side effects and death over the years, from people all over the spectrum of being medicated and not medicated, that I chose not to bury my head in the sand. I sure don't hope to have any of the more horrible problems; but I've always expected that in the end something from this terminal disease or the medications will catch up to me someday. So I keep trying to stay well-read on these issues and keep a watchful eye out on myself just in case I see the early signs. Thankfully on my trip down this road, just a step behind those first affected, I haven't had as many of the problems as others have; but I don't ever poo-poo them for their "negatively". For all I know lipo and the cognitive problems are just around the corner for me too. ::)

So far, there's no cure; but there are still side effects from the meds, and side effects that no one even knows about yet. If you don't want to know about what might be ahead on the road for you with HIV, I suggest to not look at the data, not listen to the personal stories, and hope for the best. But I'm still waiting for a cure - and still taking my meds until then. I'll tell you though that "waiting", even with all these problems and potential problems, is much better than the alternative of being dead. I sure wish Jim or Randy was still here waiting with me too. Instead they're dead and I'm enjoying life as best I can - even when it entails barfing, aches, cognitive issues, depression, osteroporsis, etc. and whatever other damage HIV and Reyataz, Norvir, Videc EC, and Viread is doing to me today.

ok, now everybody go take your meds, have happy thoughts, and enjoy the life you have today!  :-* ;D
leatherman (aka mIkIE)


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

Offline skeebo1969

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Re: Early Aging -- New York magazine article
« Reply #34 on: November 03, 2009, 02:59:47 PM »



  I can't believe people are doubting the validity of what the article states.   It's almost like saying, hey seatbelts don't save lives because I've never been in an accident and had one save mine.  I can see applying scenarios to one's personal experiences and saying hey that does not apply to me, but on the other hand I think it's a bit ignorant to dismiss it in it's entirety as not being true or sensationalized even.

  Personal side note:  Damn is it hard to type responses while your computer is being attacked by a virus. These damn security alert windows are driving me crazy!
I despise the song Love is in the Air, you should too.

Offline GNYC09

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Re: Early Aging -- New York magazine article
« Reply #35 on: November 03, 2009, 07:20:03 PM »
I'm sharing an article I just read, which sadly supports the NY Mag article...

Neurocognitive Issues Plague HIV-Infected Patients Taking Antiretroviral Therapy: Presented at IDSA
By Ed Susman

PHILADELPHIA -- November 1, 2009 -- Neurocognitive impairment -- frequently seen among untreated subjects with HIV -- appears to persist among a substantial minority of patients treated with highly active antiretroviral therapy (HAART), according to researchers presenting here at the 47th Annual Meeting of the Infectious Diseases Society of America (IDSA).

"The introduction of HAART reduced the incidence of HIV-associated dementia by about 50%," said Abayomi Agbebi, MD, Washington University School of Medicine, St. Louis, Missouri. "Paradoxically, HAART does not reverse cognitive impairment in all patients."

Dr. Agbebi and colleagues found that 23% of HIV-infected subjects -- 182 of 793 patients -- attending the Washington University HIV clinic in 2008 in this prospective cross-sectional study had neurocognitive impairment, despite being on outpatient treatment with antiretroviral therapy.

"In the era of HAART, the prevalence of HIV-associated neurocognitive impairment remains high," Dr. Agbebi reported in a poster presentation here on October 30.

The research team conducted a multivariate analysis of factors that were associated with persistent neurocognitive impairment and found that older age (40+ years) and lower education (defined as people without a college-level degree) were significantly associated with cognitive impairment (P < .05).

"Persons with a college degree had a lower prevalence of cognitive impairment," Dr. Agbebi said. "Aging is a significant risk factor for cognitive impairment. As the HIV cohort ages, further investigation is needed into the effects of aging on HIV cognitive impairment."

The researchers found no association between neurocognitive impairment and gender, ethnicity, coinfection with hepatitis C, excess alcoholic intake, CD4-positive cell count, type of antiretroviral regimen, or whether a patient was taking an antiretroviral therapy that had central nervous system-penetrating agents.

"Multiple studies have shown certain antiretrovirals achieve a higher concentration in the cerebrospinal fluid," Dr. Agbebi noted. "Based on current evidence, antiretroviral cerebrospinal fluid levels cannot be used to choose a regimen."

The researchers added that the effect of high levels of antiretrovirals in cerebrospinal fluid remains controversial.

Funding for this study was provided by a grant from Bristol-Myers Squibb.

[Presentation title: HIV-Associated Neurocognitive Impairment Remains Prevalent in the Era of HAART. Abstract 351]

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #36 on: November 03, 2009, 07:43:51 PM »
Not sure why everyone is surprised by that considering all the constant whining about "brain fog".  I never get brain fog myself, because I use poppers.
"I’ve slept with enough men to know that I’m not gay"

Offline edfu

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Re: Early Aging -- New York magazine article
« Reply #37 on: November 04, 2009, 02:21:26 AM »
No wonder.... ;D
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Offline elf

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Re: Early Aging -- New York magazine article
« Reply #38 on: November 04, 2009, 03:39:57 AM »
http://www.ncbi.nlm.nih.gov/pubmed/19685437?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2
Neuronal protection by bioactive nutrients.




http://www.ncbi.nlm.nih.gov/pubmed/19523795?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=7
Omega-3 fatty acids and dementia.

Results to-date suggest that DHA may be more effective if it is begun early or used in conjunction with antioxidants.

Offline carousel

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Re: Early Aging -- New York magazine article
« Reply #39 on: November 04, 2009, 04:34:59 AM »
The article raises serious issues and I think it is fair of people to tease out of it what is relevant and true for them and what is unsupported statements.  I think that is different from saying that it is a load of rubbish.

I'm afraid that I am one of those who chooses to put my head in sand when it comes to most of the medical information regarding HIV.  I am not on treatment after being diagnosed 5 years ago.  It is only a matter of time before I will have to face it, but I don't see why I should worry about the what ifs now.

In the same way that I didn't worry about dementia, Alzheimer's or any other degenerative disorder when I was well, I'm not going to worry my pretty little head on it now, I think.

Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #40 on: November 04, 2009, 05:47:14 AM »
http://www.ncbi.nlm.nih.gov/pubmed/19685437?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2
Neuronal protection by bioactive nutrients.
http://www.ncbi.nlm.nih.gov/pubmed/19523795?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=7
Omega-3 fatty acids and dementia.

Results to-date suggest that DHA may be more effective if it is begun early or used in conjunction with antioxidants.

These things don't cure dementia/Alzheimer's however, dear, and it's really not 100% proven that it will stop these or their progression either.  Not saying don't help yourself, just saying.......

A lot of posts in this thread is why, with issues like this, I stick to the LTS'ers forum. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline carousel

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Re: Early Aging -- New York magazine article
« Reply #41 on: November 04, 2009, 06:04:11 AM »

A lot of posts in this thread is why, with issues like this, I stick to the LTS'ers forum. 

But, thanks for popping by.

Offline minismom

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Re: Early Aging -- New York magazine article
« Reply #42 on: November 04, 2009, 07:15:35 AM »
Long-term / short-term memory issues, DEXA scans, heart and liver issues, bowel and bladder issues, vision problems, tracking problems, dizziness, ringing of the ears, stiff joints, sore / weak muscles, avascular necrosis, lypoatrophy, lypodystrophy, wasting, diabetes, cerebral palsy, high cholesterol, high triglycerides - all wrapped up in body of a 9yr old.  I'd say early aging is definately associated with HIV/AIDS.  Is it the virus?  Is it the meds?  Does it really matter?

Mum
« Last Edit: November 04, 2009, 07:24:23 AM by minismom »
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Offline Nestor

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Re: Early Aging -- New York magazine article
« Reply #43 on: November 04, 2009, 10:27:09 AM »
Elf,  thank you so much for these links, and the ones you posted earlier.  This is precisely the sort of thing we should be doing right now.  It's called lighting a candle rather than cursing the darkness.  They give real reason for hope.  And looking into anti-oxidants, omega-3s, turmeric, etc is precisely the kind of thing that would be wise right now, with the warning given in that article.  That, and looking into ways to fight or prevent bone loss, perhaps.

"These things don't cure dementia/Alzheimer's however, dear, and it's really not 100% proven that it will stop these or their progression either.  Not saying don't help yourself, just saying......."

Just saying what?  A lot of things haven't been 100% proven.  In fact very, very few things have.  What is the point?  I would agree with you if your "just saying" that we shouldn't become fanatically attached to things that may not be true, but you run the risk of sounding as if you were "just saying" that nothing works, nothing is proven, therefore we should all just give up hope and stop trying our foolish little attempts to improve our health any natural and sensible way we can.  I'm sure that that isn't what you meant, but in case someone interpreted it that way, I thought I'd ask.  For example, you go on to say:

"A lot of posts in this thread is why, with issues like this, I stick to the LTS'ers forum."  Again, I'm sure you are not referring to Elf's helpful post, but it might sound that way.  

  Minismom asks: "Is it the virus?  Is it the meds?  Does it really matter?"  With all due respect, I would submit that it matters very, very much.  How are we going to devise a strategy for dealing with something if we don't even know the cause?  Plus remember people like me who are dealing with the "when to start meds" question.  If it is the meds causing the dementia, bone loss etc., that means "put off the meds as long as possible."  If it is the HIV itself, then that would mean "start meds as soon as possible to restrict the virus right away.  I would think it matters very, very much.  

Thank you for listening.  

And by the way, I asked some posts back whether the proposal for testing and treating "every single adult in the Bronx and DC" meant forcing people to be tested and treated whether they wanted it or not, or simply making testing and treatment available should they wish it.  The quote in the article suggested the former.  
« Last Edit: November 04, 2009, 11:54:31 AM by Nestor »
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Ann

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Re: Early Aging -- New York magazine article
« Reply #44 on: November 04, 2009, 11:51:47 AM »

And by the way, I asked some posts back whether the proposal for testing and treating "every single adult in the Bronx and DC" meant forcing people to be tested and treated whether they wanted it or not, or simply making testing and treatment available should they wish it.  The quote in the article suggested the former. 


It's not about FORCING people to test and go on treatment, it's about making testing much more available and easily accessed. It's about people being routinely offered testing when they see a doctor for whatever they're seeing the doctor for. It's about no longer keeping hiv in the dark. It's about increasing testing so we no longer have such high numbers of people running around (potentially spreading their virus) with no idea they're positive until they end up in hospital with PCP or worse.

We see it here all the time... "I tested positive when I was deathly ill in hospital with PCP". Or "I decided to have an hiv test and discovered my numbers are 153, 12%, 95,000!" If people are tested regularly as a matter of routine, they can discover they're hiv positive before they've progressed to an aids diagnosis and before they're on a ventilator because their lungs can't cope due to PCP. One of the leading causes in developed countries of aids-related deaths is LATE DIAGNOSIS.

~sigh~

Ann
« Last Edit: November 04, 2009, 11:53:30 AM by Ann »
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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

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #45 on: November 04, 2009, 12:13:50 PM »
Nestor, while I can see how the language was a bit casual as regards the DC/Bronx issue in the article there's simply no legal way that they could do what you are imagining.  Let's be realistic about that.
"I’ve slept with enough men to know that I’m not gay"

Offline Nestor

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Re: Early Aging -- New York magazine article
« Reply #46 on: November 04, 2009, 12:36:47 PM »
Ann, thank you for that clarification.  I'm all for testing and treatment being available.  But the language of the article:

"In a dramatic move last week, the National Institute of Allergy and Infectious Diseases upped the ante even further by announcing a massive new plan to test virtually every single adult in the Bronx and the District of Columbia—homes to some of the highest rates of infection in the country—and put everybody who tests positive on anti-HIV drugs, whether they have depleted T-cell counts or not."

worried me because it didn't contain any reference to the freedom of the individuals involved to choose whether to get tested or not.  "put everybody who tests positive on anti-HIV drugs, whether or not..." sounds as if they don't have a choice in the matter.  That worried me.  It didn't say "give everybody...the option to take the drugs" or even "urge everybody...to take the drugs."  Just "put everybody on the drugs."  Probably it's that word "put" that bothered me most; when you say you're going to put a patient on a drug, it suggests that the patient has no agency in the matter.  Anyway, perhaps it's just me being hypersensitive.  

Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Nestor

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Re: Early Aging -- New York magazine article
« Reply #47 on: November 04, 2009, 12:44:31 PM »
Philicia, thank you too for that.  There's a sort of disease of "fearing that totalitarianism is always around the corner" and I wouldn't want to succumb to it! 

On another matter, I've been thinking a lot about the gulf between people who are criticising this article as "alarmist"and those who are offended by that position.  In a way I have a foot in both camps. Let me explain what I mean by that. 

One of the first comments I read in the comment box in the original New York Magazine site was from someone called Mikey who says:

"I'm 22 and HIV positive for 4 years. I think it's a bit absurd though that every time there is an article in regards to HIV/AIDS, authors and writers always have to put the negative aspects of it and the most advanced and horrible cases of the disease and just scare everybody....I face a lot of rejection in the dating world because of articles like this. People thinking that I take 80 pills a day, that I'm sick, I'm this, I'm that. You should perhaps do an article about people having healthy successful lives as well."

So of course, my first thought was "how selfish and narrow-minded; here are all these people suffering and he's thinking about his dating options."  And it didn't help that he went on to say "I've been in 3 relationships with negative men for long periods of time. They're all still negative and fine." Except that when you're 36, as I am, it sounds a little comical for a twenty-two-year-old to say that he's been in three relationships that each lasted "long periods of time", but then again the very young have a different relationship with time. 

 It may be that for someone like Mikey there are profound reasons why it is a good idea to think this way.  Might it not be that, if he gave serious thought to the implications of living with HIV for twenty years or more, he might go crazy from worry?  I do not have that luxury.  More than my own HIV diagnosis, it was the fact of losing someone very, very, close to me, to cancer, which has forced me to take a long-term view of health.  (As an aside, that person found out she had cancer and died less than two years later.  I got HIV and five and a half years later haven't even had a sniffle.  Which I remind myself of every time I'm tempted to feel sorry for myself or carry on as if having HIV were in itself a big deal.)  But my point is, I've spent a lot of time wondering whether doing this differently or that differently--in terms of everything from nutrition to spiritual development--might not have made things different for that person, and whether anything I can do now can make a difference in terms of my own long-term prospects of living with HIV.  So this article struck me as useful and a good thing to read on many levels.  For one thing, we should not be islands obsessed with our own personal situation; we need to know what our fellow human beings are going through.  For another, again, we need to know what issues we ourselves might face so we can think about dealing with and, one dares to hope, ameliorating them. 

At the same time, being 36 and healthier than most of my HIV-negative friends and having the same energy and desires I had before I tested positive, I want to scream sometimes at the way in which I am sometimes treated as a pariah because of my "condition".  One example: I was at a club about two years ago and I met a man whom I found very attractive and who seemed to like me as well.  After some conversation he invited me to his home--and, he said, not necessarily for sex, just for "conversation and warmth and cuddling" (his words).  That was fine, although to be honest sex was in the air.  At any rate, for some reason, I told him then that I was HIV positive.  Why, I have no idea, but I thought that if I did get to his home, and things got passionate, I would not have the strength to tell him at that point, and I had listened to the rhetoric about the necessity to disclose.  Well, he immediately pulled back and became somewhat frigid and said that in that case it wouldn't be a good idea.  He explained that he was a doctor and "it's just that I'm surrounded by it at work."  It?  Am I an "it" now?  And this is a medical professional, and basically even "conversation and warmth etc. etc." are out of bounds now that I have "it"?  I'm sure many of us have been in this sort of situation and we all know what it does to our minds.  And then there's the sheer hysteria which surrounds so many negative people's fears of getting HIV; and then there were conversations online where HIV- gay men said things so hurtful that I wouldn't dare repeat them here.  (okay, just one example: on gay.com, there's one man who, every single time HIV is the topic of a thread, is sure to pop up and say "Responsible people don't get HIV.")  This is what is meant by "stigma".

So this is why I understand Mikey despite the degree of insensitivity apparent in his reply.  He's twenty-two and he wants to go out and have fun and instead he's got the albatross of this virus around his neck.  And by the way it fills me sadness to hear a 22-year-old blithely telling us that he's had HIV for four years---since he was eighteen?  So, rightly or wrongly, he identifies stigma with this fear of illness, and thinks that if it weren't for articles of this sort in New York magazine, he could succeed in telling the guys he meets on the dance floor that having HIV is no big deal, and that they might believe him, and that then stigma might go away.  Obviously I don't think that the correct way of fighting against stigma is to hide the truth about the current medical situation (magna est veritas et praevalebit) but I can understand the temptation to do so. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #48 on: November 04, 2009, 02:06:53 PM »
Nestor, I'm at work, and for some reason, the quote function won't work right, but I wanted to let you know something.

We, at least a lot of us, back in the stone age, would hold out that "natural" things would "cure" Aids.  It never happened.  And a lot of us spent a lot of money on these things.  Money that we could have better used for whatever, hell, things that really brought us enjoyment.  Like I said, I didn't say don't help yourself.  But, depending on these things, do not wipe out events that will happen due to ongoing HIV. 

I've been positive for 20 fucking years, and used to have a whole shoe box full of supplements, and vitamins.  And it did nothing for my health.  Well, except maybe tax my liver more.  And yes, I do take a multi vitamin, calcium w/ D and occasionally a "C."  I don't overload myself on these things anymore.  You do what you want.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline skeebo1969

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Re: Early Aging -- New York magazine article
« Reply #49 on: November 04, 2009, 03:44:58 PM »


  Which thread is this?  Is this the one on early aging or the progam being offered in DC?

 
I despise the song Love is in the Air, you should too.

Offline Nestor

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Re: Early Aging -- New York magazine article
« Reply #50 on: November 04, 2009, 05:05:08 PM »
Both were discussed in the New York Magazine article, and so I suppose both are being discussed in this thread.  As someone said, perhaps the article tried to discuss too many things at one time. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline max123

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Re: Early Aging -- New York magazine article
« Reply #51 on: November 04, 2009, 05:33:34 PM »
wow, this is a loaded thread  :o

i for one, can appreciate everyone's posted point of view regarding the subject matter. it's a sensitive issue. the media does what the media does...sensationalize. however, the cold hard facts are that science does appear to support the facts that both hiv and the meds designed to control it have the potential to hasten neuro-cognitive disorders. while today's med treatment options are better than in years past, they are not perfect or side effect free, nor are they a cure.  as a newbie to both hiv and the "when to start meds" dilemma, this potential, among others, is a scary thing, but one that i must accept and move past. for me, it's about learning to keep myself as healthy as possible without meds for as long as i can safely do so.

prevention, testing, treatment and the very real consequences of all need to be put out there for all to see, smell, taste, grasp & understand. personally, i would hope that the majority of us newly diagnosed pozzies and veterans alike, would rather take a proactive stance and know the potentials of what we are up against so we can make informed lifestyle choices for ourselves. sticking our heads up our asses & enjoying the view will offer little help for the long haul. it's not about simply popping a pill and everything is going to be fine...in fact, far from it.

as concluded on numerous threads here, no two hiv cases are exactly alike. some people progress faster & some slower. some have low cd4 counts and viral loads versus the typical inverse relationship seen. logically, the potential for developing secondary neuro-cognitive complications would also follow suit in this regard...generally speaking, be unpredictable. genetics, lifestyle and additional risk factors would likely dictate neuro-cognitive complication progression to some degree, as seen in hiv infection itself.

breaking it down:
for neuro-cognitive impairment, we know that the side effects of some hiv meds are hyperlipidemia, hypercholesterolemia and increased insulin resistance. hyperlipidemia and hypercholesterolemia, in turn, can cause reduced micro-vascular blood flow to vital brain tissue with the resulting factor being brain cell death (vascular dementia). insulin resistance can cause an increase in amyloid plaque formation in the brain (as also seen in alzheimer's), causing a tangling of the neuro-transmission pathways in the brain. inflammatory chemicals caused by hiv in brain tissue (a known reservoir) can also interfere with normal neuro-chemical messengers, delaying normal neuro-transmission. putting two & two together, this is pretty compelling logical evidence that meds can inherently carry some degree of provocation.

below are some cool & simple links that may provide some additional scientific data for those interested. while the last three are published on an alzheimer's site, the disease processes noted are universal.

best of neuro-cognitive health to all  ;)

max

http://www.ninds.nih.gov/disorders/dementias/detail_dementia.htm

http://www.hbo.com/alzheimers/science-the-problem-of-cholesterol.html

http://www.hbo.com/alzheimers/science-diabetes-and-insulin-resistance.html

http://www.hbo.com/alzheimers/science-vascular-dementia-and-alzheimers-disease.html


1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #52 on: November 04, 2009, 06:46:38 PM »
Max, is that what you think we do-put our heads up our asses?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online bocker3

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Re: Early Aging -- New York magazine article
« Reply #53 on: November 04, 2009, 07:08:52 PM »
Max, is that what you think we do-put our heads up our asses?

I don't think that was what he was saying - my take was he was pointing out that one has to be aware of risks and issues from HIV and meds as well as things we do to help.  Perhaps you should reread and be a little less defensive --  try to not take things so personally.

Mike
Atripla - Started 12/05
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Offline Nestor

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Re: Early Aging -- New York magazine article
« Reply #54 on: November 04, 2009, 07:55:39 PM »
BT65, Thank you for your advice and perspective; I partly agree.  In fact I don't take any supplements at all, except for cod liver oil and occasionally some brewer's yeast.  For myself, I'm interested mostly in real, whole foods.   Why take garlic pills when real garlic is abundant and good?  Why take fish oil when you can eat lots of fish?  

 If you're warning us against the health results or economic cost of going overboard on supplements, I would agree 100%, and if you're saying not to have unrealistic expectations I would definitely agree with that.  

I also agree, very strongly, with the implication that there are more important things we can be doing with our money and time and energy.  I really have to watch out for that myself.  I'm preparing for grad school and I'm supposed to be reading a heap of books and learning foreign languages and getting student loan applications in order, and instead sometimes I'll spend hours reading about coconut oil or Co-enzyme Q10 or the side effects of various anti-retrovirals and then I'll think "this really is not what I'm supposed to be doing with my energy."

In fact, the message one takes from this article might be the opposite: not "obsess about preventing bone loss" but "live all you can now".  

BUT to leap from "it won't cure AIDS" to "there's no point in even hoping that some of these things will defend us from dementia or bone loss" seems to me rather like throwing the baby out with the bathwater.  For one thing, the articles to which Elf gave us links said things like the following:  

"More than a dozen epidemiological studies have reported that reduced levels or intake of omega-3 fatty acids or fish consumption is associated with increased risk for age-related cognitive decline or dementia such as Alzheimer's disease (AD). Increased dietary consumption or blood levels of docosahexaenoic acid (DHA) appear protective for AD and other dementia in multiple epidemiological studies..."

and:

"Numerous observational studies demonstrate a positive correlation between a high intake of antioxidants and better cognitive function in the elderly"

That these things do not amount to "100% proof" hardly seems to me to justify splashing cold water in the face of someone trying to derive from it reasonable hope and an informed agenda for maintaining his or her own health.  In fact, I think reading such things (in moderation) and adding fish and anti-oxidant containing stuff to one's diet (again, in some moderation) is a highly reasonable thing to be doing.  

If you once believed that natural remedies would 'cure AIDS' you were more optimisitc than I have ever been; if you now believe that none of it is of any use you are more pessimistic than I hope I shall ever be.  

Of the shoe-box full of supplements which you once took, you say that "And it did nothing for my health."  Without having any idea what sort of supplements they were, I of course cannot comment.  But can you even be sure of that?  You mention 20 years with HIV, and you are not only still here but working and writing these messages, which means that you're doing better than some of the people mentioned in that article.  Isn't it even slightly possible that some of those supplements made the tiniest contribuition to that?  

And because some supplements surely don't do much, or even do some harm, does that mean that all of them, and all natural remedies, are equally pointless?  There's another thread in which someone is talking about all-raw veganism and someone else came along and compared it to drinking one's own urine.  I'm no fan of all-raw veganism, but the implication that all non-pharmaceutical remedies are equal, and equally pointless, disturbed me.  

In fact every one of us, pos and neg, should be eating far better than we do.  Anecdotal evidence, common sense, and my own experience suggest to me that people who eat well are likely to be less depressed, more energetic, and healthier than they would be if they had eaten less well.  I'm sometimes amazed at all the HIV-negative people I know who are burdened with depression or cholesterol or blood pressure or diabetes or whatever--as I said, sometimes it seems as if I'm in better health than most of the HIV-negative people I know.  

I think my criterion is this: if it's something that I would not mind doing anyway, or that has broad possible health benefits, then I'll do it.  Does bitter melon, or do shiitake mushrooms, really do anything against HIV?  I don't know, but they're basically healthy anyway, and they're good things to incorporate into a diet, so why not?  Why not eat lots of tuna and salmon?  Does it hurt me to gravitate towards recipes with lots of garlic and ginger and turmeric and?  Even if the studies Elf has linked to turn out to be disappointing, it won't have hurt me to eat those things, and probably it will have been of some use.  Now if, on the other hand, some study suggested something extreme or unpleasant or potentially dangerous or expensive, my criteria would become far more stringent.  

Carousel says:

"In the same way that I didn't worry about dementia, Alzheimer's or any other degenerative disorder when I was well, I'm not going to worry my pretty little head on it now, I think."

My experience has been different.  I sure wish I had never gotten HIV, but I think one of several silver linings is that it's forced me to take nutrition and health seriously while it's still not too late.  In the past few years I've educated myself a lot about health and nutrition and I think I see huge improvements in my life compared to the past--I'm less depressed, have more energy, feel better.  Unlike all my negative friends who never thought about health a day in their lives, blithely eating the Standard American Diet, until suddenly out of the blue they had diabetes or high blood pressure or whatever.  

My final take on the article: I'm sure glad I didn't see it shortly after being diagnosed poz!  It would have terrified me.  
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline MitchMiller

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Re: Early Aging -- New York magazine article
« Reply #55 on: November 04, 2009, 11:44:57 PM »
I finally read the article.  There was another very similar article written about a year ago with less emphasis on the neurological symptoms of AIDs.  Sounds like the meds if your fully virally suppressed; and the virus otherwise.  Can't seem to win

From the fourth section of the article:

But in many cases of dementia, there are no signs of viral activity around the brain, suggesting other factors may be at play. At the Manhattan HIV Brain Bank at Mount Sinai, researchers have dissected the skull contents of 250 volunteers who agreed to a series of psychological interviews and neurological exams, then promised to hand over their brains at death. (One is the gift of Fred Gormley, a felicitous writer who toiled with me years ago at the now-defunct New York Native; he wrote about his life as a brain donor before his death from AIDS complications in 2002.) According to Dr. Susan Morgello, who directs the lab, most people who showed signs of dementia while alive do not have evidence of HIV in their autopsied brain. What they do have in common, she says, is evidence of persistent inflammation, which alone could account for the cognitive damage.

I still reiterate my own experience is that the meds cause my brain to experience inflammation.  Anti-inflammatory drugs make a definite difference, aspirin more so than ibupropen. 

Before I was on meds, I really had bad tinnitus and brain inflammation.  I was also rapidly experiencing onset of dementia (had trouble verbalizing and expressing my thoughts, a lot of trouble concentrating)... occurring just nine months after infection.  Meds helped a lot, but over time meds have increasingly been causing inflammation.  What's really strange is that the inflammation seems worse if I take aspirin for a couple days, then go off it.   Maybe we should all be on that one aspirin a day routine???  We should definitely be pushing it on the cardio workouts since vigorous exercise has been shown to reduce immunological inflammatory responses.

I now have bouts of mental "white outs." akin to the feeling one gets when their making a public speech and suddenly seize up... where their mind goes blank.  When I'm ask questions in public where I have to give personal info, sometimes my brain just seizes up and I can't remember my phone number.  I pause, relax, then it all comes flowing through and I'm fine.

My latest new thing is tincture of the green hulls of black walnuts. The active ingredient has been shown to "arouse" latent virus in the lab.  What I've noticed after taking it for nearly a week is that I am able to think more clearly.  This could be the placebo effect or simple coincidence... maybe just the ethyl alcohol in it??   However, it also seems to make my head ring louder, although I take it w/my meds.

Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #56 on: November 05, 2009, 05:55:55 AM »
Nestor, it's been said by nutritionists, and I agree that we should get most of our healthy vitamins from food.  So, I totally agree with the eating fish, garlic etc. thing.  It may appear that I'm as healthy as a horse, but that's not necessarily the case.  I have severe neuropathy in my feet, lipodystrophy, avascular necrosis in both knees, Insulin-dependent diabetes that happened just 10 years ago,  have had to get dentures, and have osteoporosis.  And sometimes, I'll read an article all the way through, and someone asks me what I'm reading about, and I can't tell them, because I just don't know.  The supplements I was taking I can't even remember the names of, it's been that long ago.  And back in those days, my friends and I were trying everything we could to hang onto life.  I went through a horrible period of wasting with constant diarrhea and got down to 80 lbs (and I'm 5'9").  So, my conclusion about taking supplements/whatever is, talk to your doctor first to make sure they aren't interfering with any other part of one's regimen.  I do not spend copious amounts of money on those things anymore.  They may "help" in some things, but they do not "cure" things, nor really totally prevent things from happening.   

Mitch, I'm glad you said what you did. I'm on Ibuprofen, and was just wondering last night about aspirin. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline David_CA

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Re: Early Aging -- New York magazine article
« Reply #57 on: November 05, 2009, 08:48:01 AM »
All this talk about (brain) inflammation has got me wondering.  How would somebody know if they were suffering from it?  It seems like aspirin or ibuprofen somewhat alleviate the symptoms, but aren't they contraindicated with most HIV meds and hard on ones liver (especially ibuprofen)?
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
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Offline Inchlingblue

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Re: Early Aging -- New York magazine article
« Reply #58 on: November 05, 2009, 09:18:14 AM »
All this talk about (brain) inflammation has got me wondering.  How would somebody know if they were suffering from it?  It seems like aspirin or ibuprofen somewhat alleviate the symptoms, but aren't they contraindicated with most HIV meds and hard on ones liver (especially ibuprofen)?

aspirin, ibuprofen, Motrin, Aleve (naproxen), Advil are hard on the kidneys and not recommended when taking Truvada. I suppose it's OK to take once in a while if one has to but best not to make a habit of it.

Acetaminophen (Tylenol) is hard on the liver. Again, probably OK once in a while but not on a regular basis.

There is a new version of acetaminophen being studied that is meant to be easier on the liver but it is not approved yet.

Offline max123

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Re: Early Aging -- New York magazine article
« Reply #59 on: November 05, 2009, 10:08:20 AM »
hi bt65,

i'm unclear of your reply and it appears that you misinterpreted what i was saying. as bocker suggested, perhaps you should reread my post. his interpretation of what i was saying is exactly on point. as a 20 year survivor yourself who has made a positive correlation between your current maladies and hiv/meds, i'm confident that you would agree with the importance of us pozzies timely knowing what pitfalls we are potentially up against resultant of the disease itself and meds.
 
I have dentures, osteoporosis, and avascular necrosis in both my knees, which has resulted in total loss of cartilage in both, and diabetes.  I feel pretty old every time I stand up.  I've been + for 20 years, diagnosed with Aids for 15, and on meds for like 15 or 16.  So I'm assuming the maladies are a combination of both (being + and long term use of meds).

for clarification, my take on the issue is that far too many people among the general population today seem to minimize the potentially serious complications that come with hiv and, or its treatments. modern hiv meds, although truly a blessing, have seemingly created kind of a false sense of security; that being "don't worry...if you contract hiv, there are meds you can take to control it and live a normal life happily ever after, without consequence." perhaps that is one reason why hiv is on the rise again. as brought up by miss p, you, ann & others, there are potentially some very real consequences to long term arv use. i take the word of those who arrived 'here' before me very seriously. unfortunately, we simply don't know what the long term effects are with modern meds are just yet. as you already know, hiv meds are not a panacea, they're simply the best mode of treatment currently available.

so, my tongue in cheek comment:

prevention, testing, treatment and the very real consequences of all need to be put out there for all to see, smell, taste, grasp & understand. personally, i would hope that the majority of us newly diagnosed pozzies and veterans alike, would rather take a proactive stance and know the potentials of what we are up against so we can make informed lifestyle choices for ourselves. sticking our heads up our asses & enjoying the view will offer little help for the long haul. it's not about simply popping a pill and everything is going to be fine...in fact, far from it.

was geared at supporting the dissemination of important info (such as the article, albeit yes, over-sensationalized, that prompted this thread) to all of us pozzies & visitors here, and to help provoke some active thought in those newly diagnosed, or those who maybe think that all they have to do is blindly take a pill and life will be grand (eg those thread responders that literally acknowledged their "sticking their heads in the sand" and, or 'bliss' positions). remember, knowledge =power!

wishing you a great day  :)

max
« Last Edit: November 05, 2009, 11:51:26 AM by max123 »
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline TimmyT

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Re: Early Aging -- New York magazine article
« Reply #60 on: November 05, 2009, 08:04:04 PM »
I agree sometimes there can be too much hysteria in our sensational media of today, but in the case of the NY Mag article about the "The New AIDS crisis" I have to say a little sensationalism might go a long way. If this topic is discussed more in the media, HIV communities, and medical communities, then maybe our legislators and government might throw a little more money in the studying of LTS'ers and the side effects of living longer with HIV. How effective are our anti-retrovirals in crossing the blood/brain barrier? There are large questions that need more answers. Answers come from more funding of studies. I for one want to see these topics dealt with on a larger scale.

Offline max123

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Re: Early Aging -- New York magazine article
« Reply #61 on: November 06, 2009, 06:23:51 AM »
Hi Tim,

most definitely agreed!

max
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline clsoca

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Re: Early Aging -- New York magazine article
« Reply #62 on: November 06, 2009, 11:58:57 AM »
I do not buy the early aging argument. I know lots of people in the LA area who have lived with hiv for up to two decades and they all look great. I also know a few who look like shit.

The ones who look like shit never took care of themselves. They consumed too much alcohol, maintained unhealthy diets and were always obese.

Just take a look at Magic Johnson as a case in point. You be the judge.

As Magic says, you have to exercise more than regularly and maintain a perfect diet....bottom line. And Magic is still undetectable.



 
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #63 on: November 06, 2009, 12:29:09 PM »
Yes, I'm sure it's all that simple.
"I’ve slept with enough men to know that I’m not gay"

Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #64 on: November 06, 2009, 02:03:22 PM »
Magic is also a fucking millionare, who can afford a personal trainer, the best foods, and a chef to prepare them.  Puh-leeze. ::)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline skeebo1969

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Re: Early Aging -- New York magazine article
« Reply #65 on: November 06, 2009, 02:22:28 PM »
Just take a look at Magic Johnson as a case in point. You be the judge.


 

EXACTLY!!  Have you seen him lately?  He looks like he suffers from side effects caused from longterm antiviral use.
I despise the song Love is in the Air, you should too.

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #66 on: November 06, 2009, 02:24:48 PM »
The more I read that post the more offended I become.
"I’ve slept with enough men to know that I’m not gay"

Offline skeebo1969

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Re: Early Aging -- New York magazine article
« Reply #67 on: November 06, 2009, 02:30:49 PM »
The more I read that post the more offended I become.

The guys probably a Lakers fan... ;)
I despise the song Love is in the Air, you should too.

Offline bear60

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Re: Early Aging -- New York magazine article
« Reply #68 on: November 06, 2009, 02:33:00 PM »
I have been trying to decide where to put this post, so this spot won the contest.  If you think that HIV is a death sentence, of course you are wrong, especially today. But there are multiple problems with treatment and aging and ultimately death.  So here you go: right out of AIDMEDS itself:

  
July 28, 2008

Life Expectancy With HIV Increases Dramatically



A 20-year-old HIV-positive person starting antiretroviral (ARV) therapy today can expect to live, on average, to the age of 69, according to new calculations published July 26 in The Lancet. The study authors say this is a life expectancy increase of 37 percent over projections for 20-year-olds starting ARVs during the early years of combination treatment.
 
HIV-positive people have frequently asked their health care providers how long they will live with the virus, especially with so many effective ARV options to choose from. Few studies have attempted to answer this question-until now.

To determine life expectancy among HIV-positive patients, an international roster of researchers joined forces and reviewed the medical records of more than 43,000 people living with the virus in the United States, Canada and several European countries. The study participants were split into three groups: 18,587 people who started ARV treatment between 1996 and 1999, 13,914 who started treatment between 2000 and 2002, and 10,854 people who started treatment between 2003 and 2005.

The researchers predicted that a 20-year-old person starting ARV treatment between 1996 and 1999, the early years of combination ARV therapy, could be expected to live an additional 36 years, to the age of 56. This increased significantly, however, as time passed. A 20-year-old who started treatment between 2003 and 2005 was expected to live an additional 49 years, to the age of 69.

The average life expectancy for a 20-year-old who remains HIV negative, at least in industrialized nations, is an additional 60 years—with death occurring, on average, at the age of 80.

HIV-positive people who didn't start ARV treatment until their CD4s dropped to 100 were expected to live 10 fewer years than people who started therapy when their CD4s were above 200. The authors also determined that HIV-positive people with a history of injection drug use were expected to live 10 fewer years than those who never used injection drugs.

In a letter in The Lancet commenting on the study, David Cooper, MD, from the University of New South Wales in Sydney, questions whether starting ARV treatment even earlier, at a CD4 count above 500 for instance, may bring life expectancy even closer to normal. Dr. Cooper hopes that the international Strategic Timing of Anti-Retroviral Treatment (START) clinical trial, which is investigating earlier initiation of ARV treatment, will provide the answer.



Search: survival, life expectancy, long-term, antiretroviral, antiretrovirals, ARV, treatment, medications


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Offline skeebo1969

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Re: Early Aging -- New York magazine article
« Reply #69 on: November 06, 2009, 02:50:46 PM »


  Interesting, so Magic had atleast another 10 years of ball left in him when he retired!  Damn this pisses me off, we were robbed!!
I despise the song Love is in the Air, you should too.

Online Jeff G

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Re: Early Aging -- New York magazine article
« Reply #70 on: November 06, 2009, 03:02:31 PM »
I see poop heading towards a fan  . Jeff , who is running back to the safety of the LTS forum .

Offline skeebo1969

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Re: Early Aging -- New York magazine article
« Reply #71 on: November 06, 2009, 03:47:54 PM »
I see poop heading towards a fan  . Jeff , who is running back to the safety of the LTS forum .

 I better run too...  I'm going to the safety of... um..  where am I suppose to go?  I guess the Nutrition & HIV forum is my only option!
I despise the song Love is in the Air, you should too.

Online mecch

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Re: Early Aging -- New York magazine article
« Reply #72 on: November 06, 2009, 03:53:12 PM »
1)  Nobody said the article was nonsense. You LTS are misrepresenting what the criticism has been in this thread.

2)  Did it ever occur to those LTS who are recounting their personal HIV war stories and the "how many I have lost" stories that some recently infected people lived through the same damn times as you, and lost people as well?  Geez. 


“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline skeebo1969

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Re: Early Aging -- New York magazine article
« Reply #73 on: November 06, 2009, 04:00:42 PM »
1)  Nobody said the article was nonsense. You LTS are misrepresenting what the criticism has been in this thread.

2)  Did it ever occur to those LTS who are recounting their personal HIV war stories and the "how many I have lost" stories that some recently infected people lived through the same damn times as you, and lost people as well?  Geez. 

On second thought I'll be hiding in the Research News forum.....
I despise the song Love is in the Air, you should too.

Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #74 on: November 06, 2009, 10:04:17 PM »
2)  Did it ever occur to those LTS who are recounting their personal HIV war stories and the "how many I have lost" stories that some recently infected people lived through the same damn times as you, and lost people as well?  Geez. 

But, they personally, in their own bodies, haven't gone through the same things, have they.   So, unless ya been there, ya ain't really got the same experience now, do ya.

I'm with Ms. P.  I'm insulted by the same post, and Mecch's post.  It's like some of the people responding here totally disregard things that us LTS'ers have experienced.  And it's also like we're being chastized, like some people think we should have had some magical power over the virus in our bodies, so we shouldn't be experiencing many of the things we are.
« Last Edit: November 06, 2009, 10:06:50 PM by BT65 »
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #75 on: November 07, 2009, 03:16:41 AM »

I'm with Ms. P.  I'm insulted by the same post, and Mecch's post.  It's like some of the people responding here totally disregard things that us LTS'ers have experienced.  And it's also like we're being chastized, like some people think we should have had some magical power over the virus in our bodies, so we shouldn't be experiencing many of the things we are.

Ah, you know the routine darling -- the LTS'ers will now be the guinea pigs for all new "HIV & Aging" special treatment protocols for the next decade, and then the n00bz won't have to deal with anything more than popping a once-a-day pill.  Of course, they'll mutter some thanks to us for our help as they go along their business.

But hey, what do I know?  I just look like shit because I never take care of myself.  It's really my fault.  So sorry to bother everyone with it.
"I’ve slept with enough men to know that I’m not gay"

Online mecch

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Re: Early Aging -- New York magazine article
« Reply #76 on: November 07, 2009, 04:47:06 AM »
I'm with Ms. P.  I'm insulted by the same post, and Mecch's post.  It's like some of the people responding here totally disregard things that us LTS'ers have experienced.  And it's also like we're being chastized, like some people think we should have had some magical power over the virus in our bodies, so we shouldn't be experiencing many of the things we are.

"like we we're being chastized"

No one is chastising LTS or anyone else.  No one disregards anything about a LTS experience.  Well at least I am not.

Some LTS's chastised posters who found the New York article wanting. Referring to pain and sufferring doesn't make an argument better but it certainly makes it personal.  

I tend to agree with Miss P that people now living with HIV for 10, 20, 30 years are of course going to be the test subjects for how to age with the disease.  Them's the breaks.  And of course we appreciate LTS and their experiences.  

When I was growing up, my Mom and Dad would take us kids downtown in August and get us new shoes, a first day of school outfit, and some other new clothes. We had to go to the sensible shoe store - it was expensive and the shoes were well made but not fashionable.  My sisters eventually wanted more fashionable shoes and my father would say "you know, when I was growing up, we had to walk to school barefoot" sounding angry and bitter.  This was always a disagreeable moment because no one was talking about the real issue on the table.

(He suffered and was poor as a kid. He made good and was working everyday to make our lives comfortable and secure. He had the money to buy whatever shoes we might want. She was a girl in school and wanted fashionable things just like all her friends.  and so on and so on, ...  He could have just bought her the fashionable shoes. And she could have cared a bit about his hardships and his current efforts for her. But that's not what happened and everyone was stressed out and disappointed in the result.)



« Last Edit: November 07, 2009, 04:53:37 AM by mecch »
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Re: Early Aging -- New York magazine article
« Reply #77 on: November 07, 2009, 06:40:22 AM »
1)  Nobody said the article was nonsense. You LTS are misrepresenting what the criticism has been in this thread.

2)  Did it ever occur to those LTS who are recounting their personal HIV war stories and the "how many I have lost" stories that some recently infected people lived through the same damn times as you, and lost people as well?  Geez. 




Thank goodness you're not allowed to post in LTS. Don't you get tired carrying such a big chip on your shoulder?

Online mecch

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Re: Early Aging -- New York magazine article
« Reply #78 on: November 07, 2009, 06:56:33 AM »
That's right, get personal, just like Miss P.  If you all have such insights into my personality why don't you PM me with your analysis, and stick to the topic in this thread.
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Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #79 on: November 07, 2009, 07:08:19 AM »
Mecch, buying shoes, and living with Aids, are two totally different subjects.  I'm a bit surprised that you're comparing the two.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline edfu

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Re: Early Aging -- New York magazine article
« Reply #80 on: November 07, 2009, 07:11:32 AM »
What to do...what to do?  Do I buy the Thom McAnn loafers or should I go for Gucci?   ::)
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

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Offline skeebo1969

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Re: Early Aging -- New York magazine article
« Reply #81 on: November 07, 2009, 08:27:43 AM »


  I want a pair of Air Jordans...

  I think we should all focus on the fact that Magic Johnson never had a shoe named after him and Michael Jordan did...  Do you guys think it was because he had the AIDS?
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Re: Early Aging -- New York magazine article
« Reply #82 on: November 07, 2009, 08:40:04 AM »
Ah come on guys be fair . If you read what clsoca said its all about how you look . Forget about what going on inside the body and mind of LTS . Its just so ... LA 

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Re: Early Aging -- New York magazine article
« Reply #83 on: November 07, 2009, 08:41:23 AM »
hi bt65,

i'm unclear of your reply and it appears that you misinterpreted what i was saying. as bocker suggested, perhaps you should reread my post. his interpretation of what i was saying is exactly on point. as a 20 year survivor yourself who has made a positive correlation between your current maladies and hiv/meds, i'm confident that you would agree with the importance of us pozzies timely knowing what pitfalls we are potentially up against resultant of the disease itself and meds.
 
for clarification, my take on the issue is that far too many people among the general population today seem to minimize the potentially serious complications that come with hiv and, or its treatments. modern hiv meds, although truly a blessing, have seemingly created kind of a false sense of security; that being "don't worry...if you contract hiv, there are meds you can take to control it and live a normal life happily ever after, without consequence." perhaps that is one reason why hiv is on the rise again. as brought up by miss p, you, ann & others, there are potentially some very real consequences to long term arv use. i take the word of those who arrived 'here' before me very seriously. unfortunately, we simply don't know what the long term effects are with modern meds are just yet. as you already know, hiv meds are not a panacea, they're simply the best mode of treatment currently available.

so, my tongue in cheek comment:

prevention, testing, treatment and the very real consequences of all need to be put out there for all to see, smell, taste, grasp & understand. personally, i would hope that the majority of us newly diagnosed pozzies and veterans alike, would rather take a proactive stance and know the potentials of what we are up against so we can make informed lifestyle choices for ourselves. sticking our heads up our asses & enjoying the view will offer little help for the long haul. it's not about simply popping a pill and everything is going to be fine...in fact, far from it.

was geared at supporting the dissemination of important info (such as the article, albeit yes, over-sensationalized, that prompted this thread) to all of us pozzies & visitors here, and to help provoke some active thought in those newly diagnosed, or those who maybe think that all they have to do is blindly take a pill and life will be grand (eg those thread responders that literally acknowledged their "sticking their heads in the sand" and, or 'bliss' positions). remember, knowledge =power!

wishing you a great day  :)

max
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
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I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Offline mewithu

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Re: Early Aging -- New York magazine article
« Reply #84 on: November 07, 2009, 08:51:11 AM »
Why are we all seemingly fighting the subjects with each other. There are many of us that made it through fine years ago and some of us didn't do so well so lets try to get together with these posts and try not to let them tear us apart and not be friends. There certainly has been a lot of deaths and many lifes havve been ruined by this disease. There is no doubt it ages us and some age with it better than others. Let the point be taken in and dwell on it use it and try not to let it tear us down even further than we are. Thanks and Love to all, Jerry :)
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Offline Ann

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Re: Early Aging -- New York magazine article
« Reply #85 on: November 07, 2009, 09:01:28 AM »
Ah come on guys be fair . If you read what clsoca said its all about how you look . Forget about what going on inside the body and mind of LTS . Its just so ... LA  

You know, that post irked me too. It's perfectly possible to look "great" but feel like absolute shit. I really hated it when I was on the hep C treatment and felt like death warmed up, but constantly had people telling me how good I looked. (probably because I'd lost weight) Never mind the fact that I had to use a walking stick to get around because my hips were in such terrible shape. ::)

And even now, people tell me how good I look - but they don't know about my constant battle with chronic hiv-related diarrhea. They don't know CAN'T SEE how many times a week I end up crapping my pants because I couldn't make it to the toilet on time. They don't know CAN'T SEE how much my joints ache. They don't know CAN'T SEE how low my energy levels are.

Looks ain't everything.

Ann
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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

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Re: Early Aging -- New York magazine article
« Reply #86 on: November 07, 2009, 09:25:51 AM »
 I had a fill in rent a ID doc some months ago at the clinic I go to give me a long condescending speech about how " good" I looked . Told me he was dismayed that I was on disability , all this from just reading the last 6 months of my history . I am a very even tempered fellow so instead of getting mad I had the clinic director fill in the blanks for him .

The director called me later and told me he was sorry that I had been treated that way in his clinic . He had to explain to the doctor in training that some of us older guys have been through hell and back , years of toxic drugs and in my case more chemo therapy than recommended in two lifetimes .

My point is if you can have this happen at a major university hospital its not surprising to me at all we are having this conversation here .
« Last Edit: November 07, 2009, 12:24:18 PM by jg1962 »

Offline sharkdiver

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Re: Early Aging -- New York magazine article
« Reply #87 on: November 07, 2009, 11:56:14 AM »
I do not buy the early aging argument. I know lots of people in the LA area who have lived with hiv for up to two decades and they all look great. I also know a few who look like shit.

The ones who look like shit never took care of themselves. They consumed too much alcohol, maintained unhealthy diets and were always obese.

Just take a look at Magic Johnson as a case in point. You be the judge.

As Magic says, you have to exercise more than regularly and maintain a perfect diet....bottom line. And Magic is still undetectable.



 

I just don't know what to say about this....

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Re: Early Aging -- New York magazine article
« Reply #88 on: November 07, 2009, 01:17:19 PM »

  I want a pair of Air Jordans...

  I think we should all focus on the fact that Magic Johnson never had a shoe named after him and Michael Jordan did...  Do you guys think it was because he had the AIDS?

No I think it's because he has PN.

Offline Ann

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Re: Early Aging -- New York magazine article
« Reply #89 on: November 07, 2009, 01:51:24 PM »
No I think it's because he has PN.

Yeah, but he LOOKS  fab, so who cares about a little PN?
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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

Offline MitchMiller

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Re: Early Aging -- New York magazine article
« Reply #90 on: November 07, 2009, 03:22:04 PM »
Wow... "beauty" is truly in the eye of the beholder.

Magic looks incredibly bloated.  He has a small tree trunk for a neck and an elephant gut.  IMHO, that's body sculpting by his friend Kaletra.

Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #91 on: November 07, 2009, 03:57:09 PM »
Wow... "beauty" is truly in the eye of the beholder.

Magic looks incredibly bloated.  He has a small tree trunk for a neck and an elephant gut.  IMHO, that's body sculpting by his friend Kaletra.

Someone with similar lipo issues isn't going to feel that comfy reading this post.
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Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #92 on: November 07, 2009, 05:38:04 PM »
Someone with similar lipo issues isn't going to feel that comfy reading this post.

Especially someone who has a "you LST'ers should look great!  It's all in the way you take care of yourself" opinion.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Joe K

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Re: Early Aging -- New York magazine article
« Reply #93 on: November 07, 2009, 06:29:08 PM »
The ones who look like shit never took care of themselves. They consumed too much alcohol, maintained unhealthy diets and were always obese.
Fortunately, beauty is both in the eyes of the beholder and only skin deep.  You however, based on your insulting comments, prove that ugly, goes to the bone.

Offline David_CA

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Re: Early Aging -- New York magazine article
« Reply #94 on: November 07, 2009, 06:43:45 PM »
All this bickering back and forth and snide, bitchy comments really isn't necessary, folks.  I still don't know why it's so hard for people to move past somebody's unenlightened posts.  It seems like it'd be a whole lot more productive (and on topic) to focus on the points in the article.  I'm (still) curious what's being done to prevent, or at least study, the alleged cause of so many of these neurological problems - brain inflammation.

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Offline Assurbanipal

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Re: Early Aging -- New York magazine article
« Reply #95 on: November 07, 2009, 06:56:51 PM »
Ah come on guys be fair . If you read what clsoca said its all about how you look . Forget about what going on inside the body and mind of LTS . Its just so ... LA 

Yeah, I had the same reaction.  LA  --  so image focused.  He has a really nice avatar pic though   ;D

Course, without a cast on my wrist it's really hard to see the osteoporosis.
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Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #96 on: November 07, 2009, 09:46:36 PM »
I still don't know why it's so hard for people to move past somebody's unenlightened posts. 

Because it personally insults me and all the other LTS'ers.  The posts aren't fair, and some cut to the core.  When we get disregarded for our experiences, and are told we should look fantastic, and if not it's our fault, well, that's something that just can't pass. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline David_CA

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Re: Early Aging -- New York magazine article
« Reply #97 on: November 07, 2009, 10:17:46 PM »
Because it personally insults me and all the other LTS'ers.  The posts aren't fair, and some cut to the core.  When we get disregarded for our experiences, and are told we should look fantastic, and if not it's our fault, well, that's something that just can't pass. 
I know exactly what you mean.  Anybody with a bit of sense would realize a disease like HIV (or cancer or Hep. C or any of a number of others) takes its toll on the one with it.  If not the disease, the meds or treatments are hell on a body.  It's an argument that can't be won; some just won't face the facts that some folks, especially those who were infected since the AZT years and before, are simply not in the same boat as some of the newly diagnosed. 

On the other hand, I know people who were infected around 20 years ago, suffered through AZT, then Combivir and Crixivan, and now are on the beginner's drug - Atripla.  Some of these people look better and have better lab numbers than most HIV- individuals their age. 

I'm not criticizing the thoughts of anybody who's bothered by some of the comments posted, only the way that some have expressed their opinions.  Some of these are obviously intended to start a pissing match, which is unproductive to anybody and doesn't really address the issues in the link that the OP posted.

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Offline Robert

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Re: Early Aging -- New York magazine article
« Reply #98 on: November 08, 2009, 12:20:06 AM »
Because it personally insults me and all the other LTS'ers.  The posts aren't fair, and some cut to the core.  When we get disregarded for our experiences, and are told we should look fantastic, and if not it's our fault, well, that's something that just can't pass. 

speak for yourself.  I'm a LTS and it doesn't insult me.  Like David said, it's an argument that can't be won so why dwell on it?  If I let shit like this bother me I would have been dead a long time ago from all the stress.

Let it pass and get on with your life.   If you want to dwell on something, think of the beautiful fall colors, the holidays,  Thanksgiving, family, friends.  The list goes on and on and on.

robert
..........

Offline leese43

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Re: Early Aging -- New York magazine article
« Reply #99 on: November 08, 2009, 12:23:00 AM »

I'm not criticizing the thoughts of anybody who's bothered by some of the comments posted, only the way that some have expressed their opinions.  Some of these are obviously intended to start a pissing match, which is unproductive to anybody and doesn't really address the issues in the link that the OP posted.


Well said..

I've sat back and read the posts over the last couple of days and have been sickened by some of the personal attacks that have gone on. I know that LTS have been through a hell of a lot and I admire your strength but from an outsiders point of view you are not coming across in a good light, it's not what you're saying but how you're saying it. I understand that you may feel insulted by some peoples naivity but does that mean it gives you the right to consciously insult them back?

Funny, I was so happy i'd finally been able to register and participate on the forums but now i'm not so sure...
« Last Edit: November 08, 2009, 12:50:48 AM by leese43 »
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Offline Miss Philicia

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Re: Early Aging -- New York magazine article
« Reply #100 on: November 08, 2009, 12:23:22 AM »
C'mon Betty.  Keep it zen baby.
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Offline skeebo1969

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Re: Early Aging -- New York magazine article
« Reply #101 on: November 08, 2009, 04:41:23 AM »

  While I am definitely not a long term survivor, I am someone who has lost people close to me because of this virus.  I watched friends and family hanging on for dear life in the mid 90's for something new to come through.  I helped bury my ex-wife's sister two weeks before I was diagnosed (while waiting for my results) after she had a stroke.  When I visited Elaine in the hospital I remembered she told me, "They say when you have a stroke the end is near"..  I didn't have HIV and I was clueless about it.  I told her whoever told her this was wrong.  She came home the next day and her husband was taking care of her.  Elaine asked for something to drink and when he left the room she slipped away.  She was the second sister in law I lost due to HIV.

  When I came into the forums back in 2005 I was a mess .  In the mist of a divorce, fresh off burying Elaine, a new diagnosis, and no idea how I was going to get treatment.  LTSer's along with newly diagnosed people guided me with their own experience and knowledge, and for that I was grateful.

  I witnessed in these forums the very beginning of this whole LTS and everyone else division.  I've accepted many times without a word, being lumped in with everyone else that the LTSer's feel are disrespecting them, whether it be their views or experiences.  You guys generalize all of us newly diagnosed as not respecting those that have walked this path far before it was paved.  While I understand your anger regarding a few in this thread, it's not fair to lump all of us as feeling the same.

  Many of the people who have gone against the grain in this very thread, if you notice, have not been on meds for a year even if at all.  Your (public enemy #1) has disrespected your forum on occasion, so why does his view even hold weight with you guys?  It should be of no surprise.

  Back in the day, well maybe a couple of years ago, we had something called HIV lite come into lingo for a day or two in the forums.  The timing of the new medicines and those newly diagnosed around the same time made us out as pariahs to those living with this disease for some time, and while a few individuals may have blatantly disrespected the LTSer's at the time there were still those of us that never did so.

  When I first came here I just wanted to know one thing from you guys, and that was if I would get to see my then 3 year old graduate high school.  You guys said I would as long as some bus didn't hit me.....  remember I was also the guy who called the CDC at 3:30 am because I had no one to talk to....  and also sadly the same guy who was Baker Acted because once again, I had no one to talk to...lol.

  So with that I have lost my train of thought and have no clue where I was going with this... Some of the comments in this thread about Magic are the exact reason I always said he was a poor model regarding those of us living with this disease.  I could be wrong, but if the guy would just come forward and share what it's like for him, I think a lot of the negative population would be surprised.  Who knows though, I could very well be mistaken.

  Ummm.. don't worry be happy! ::)
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Re: Early Aging -- New York magazine article
« Reply #102 on: November 08, 2009, 06:38:29 AM »
speak for yourself.  I'm a LTS and it doesn't insult me.  Like David said, it's an argument that can't be won so why dwell on it?  If I let shit like this bother me I would have been dead a long time ago from all the stress.

Let it pass and get on with your life.   If you want to dwell on something, think of the beautiful fall colors, the holidays,  Thanksgiving, family, friends.  The list goes on and on and on.

robert

She is speaking for herself and it's condescending to suggest otherwise. Maybe you should follow your own advice and not dwell on it. Let her comment pass and get on with your beautiful life. That's YOUR advice. Just what the doctor ordered.

Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #103 on: November 08, 2009, 08:44:29 AM »
Thomas, I'm not saying that all newer diagnosed people disrespect LTS'ers.  But, for someone to suggest that how we look and feel is totally due to how we take care of ourselves, and to compare Aids to buying shoes is insane, at least to me.  I did the same things as my friends I've lost, yet they died and I'm still here.  Everyone's body is dfferent.  Some people are LTNP'ers, and live on without having to have meds, and doing very well.  Others have been on meds for years, and are having problems such as those described in the article.  And some have died, no matter what they did to try to survive. 

I'm not generalizing all newer diagnosed people.  And LTS'ers should not all be generalized either. 

Let it pass and get on with your life.   If you want to dwell on something, think of the beautiful fall colors, the holidays,  Thanksgiving, family, friends.  The list goes on and on and on.

You don't even know me, so don't think I "dwell" on this forum all day.  Far from it.  Yesterday I took two of my grandkids to the movies and out to eat.  I have quite a life outside of here, which obviously you didn't even think of when you posted, and made an "ass"umption about me. 

Don't tell me how to think, Robert.  You told me to speak for myself, so you do the same. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online bocker3

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Re: Early Aging -- New York magazine article
« Reply #104 on: November 08, 2009, 10:07:16 AM »
Maybe it's time for this train-wreck to be ended????  It's going no where fast.

Moderators????

Mike
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Current Labs
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Online mecch

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Re: Early Aging -- New York magazine article
« Reply #105 on: November 08, 2009, 11:49:44 AM »
and to compare Aids to buying shoes is insane, at least to me. 
It is a rhetorical device called metaphor.  You take it literally.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline max123

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Re: Early Aging -- New York magazine article
« Reply #106 on: November 08, 2009, 04:52:47 PM »
the evolution of this otherwise intriguing/eyeopening/thought provoking thread appears to have really gone south...

many of you lts folks here have:

• lived with hiv since its birth twenty-somewhat years ago.
• experienced extreme devastation, isolation, loss and endured a unique set of hardships different from those diagnosed in today’s world, but nonetheless resultant of the same horrible disease that we all share.
• experienced significant secondary side effects from earlier generation hiv meds that you took to stay alive.

i admire your bravery and fervor. my heart also goes out to all of you hiv pioneers...those of you who are still here today, and the ones that unfortunately, are not.

Many newbies here look up to all of you to share your experiences, knowledge and wisdom. in whatever way you lts folks feel is analogous, you are like teachers, leaders and mentors on these forums, putting you all in a unique position. i realize that most of you likely didn't have that kind of rock to lean against when you all were where we are currently at; which yes, is unfortunate but as timing had it, many of you headed this epic disease. while i can understand that some of the newbie forum comments spurn frustration for some of you, many of you do have twenty somewhat years experience in this, and that experiential learning affords most of you a significant edge over most of us.

at the end of the day and irrespective our our particular walk of life, color, sex, orientation or occupation, we're all here with one commonality: hiv. we come here for information, support and understanding. with all due respect to all forum members, my two cents is let's all make a better attempt to make that happen and agree to disagree on certain issues. we already have enough division & hairsplitting between poz vs. neg in the world; do we really need it here too? just a thought...

peace out

max

1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline Assurbanipal

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Re: Early Aging -- New York magazine article
« Reply #107 on: November 08, 2009, 05:00:26 PM »
It's interesting to see how people focus on the different risks.  Some are focused primarily on fat redistribution, others on inflammation and dementia, others on bone health. Has anyone focused on the heart attack risks?  Or the diabetes?


As the OP I would, however, like to request that people focus on the article rather than on the forums structure or generalizing based on people's experience as being or not being a "long term survivor" (a term that people use to mean different things, viz several inconclusive threads in these forums).  

Like David NC I'm interested in the inflammation issues.  In part, that's because I know that my own physical exam showed really high (30 times the upper limit of normal) on one inflammation marker a couple of years before the AIDS diagnosis.  My heart checked out fine, so it was just unexplored. But now I wonder what the long term effects of up to a decade of unchecked inflammation have done.  And how effective was that daily aspirin that I started around 15 years ago?    

Rereading the article and the thread one starts to wonder if HIV is perhaps misnamed.  While it certainly does cause immunodeficiency is that just by rapidly aging the immune system, i.e. a subset of its effects?  Maybe this should be human early aging virus.




5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline MWCLTonline

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Re: Early Aging -- New York magazine article
« Reply #108 on: November 08, 2009, 05:39:41 PM »
;) I agree with Ann and have discussed same w/ my local HIV/AIDS Care Coordinators & prevention & education folks.  I also think that we as a CommUNITY should talk about, be unified & identified by the whole HIVe rather than a NAPWA...  After all; we all have one but not necessarily the other!

I want to agree with max123 as well and offer these 2cents:
" What the public really loathes in homosexuality

is not the thing itself but having to think about it" -E. M. Forster

This is equally, if not more, true in regards to the current status of HIV/AIDS in America.  I am speaking as one who has been a participant in and experienced the full history of the disease.  I also speak as a pre-Stonewall baby boomer (born 1955) that has experienced the whole gamut of anti-gay sentiments; from discrimination, verbal assaults, harassment and a gay-bashing to discrimination and familial indifference and abandonment.  One of my mentors, Oprah Winfrey, espouses that "Forgiveness is giving up the hope that the past can be different".  A concept that I've tried to embrace as a way of healing my anger and self. However, I find that I can not embrace "Forgive and Forget" and I refuse to yield to the outside forces that expect it of me.  Likewise, I refuse to abandon my mission to keep reminding us of these past mistakes in order to keep them from being repeated in the future.

Eleanor Roosevelt is attributed to saying:

  You gain strength, courage, and confidence by every
     experience in which you really stop to look fear in the
     face...The danger lies in refusing to face the fear, in not
     daring to come to grips with it...You must make yourself
     succeed every time. You must do the thing you think you
     cannot do."

and

Beautiful young people are accidents of nature,
But beautiful old people are works of art.
Learn from the mistakes of others.
You can't live long enough to make them all yourself.
 
One of the bones that this old dog can't let go of is the way gays have been regarded, treated and raised in America.  While I can acknowledge that folks may have done the best they could or knew how to do; I can no longer restrain myself from saying that while that may have been true, it just wasn't good enough.
 
I was reminded of this after reading part 3 of a series about the local appearance of Judy Shepard in the Greater Cincinnati GLBT News, where she talked about her sons coming out:
 
"Matt was 18 when he came out to me, over the phone...  And my reply was, Oh what took you so long to tell me?  And there was this pause on the other end and he said, Oh well, how did you know before I knew? and my reply to that was, Oh well, they tell me it is a mom thing.
Thank God I questioned, because it gave me time, about 10 years, to educate myself about what his life could be like should he be Gay.  At that period of time there was not much positive literature...  I knew that should he be gay his potential for becoming a victim would grow expediently.  I educated myself as much as I could...  So, I was preparing myself for Matt to come out to me and was not surprised when he did but was surprised it took so long for him to come out to himself...
Make A Difference, Be Involved!
I'm glad for PFLAG, Parents and Friends of Lesbians and Gays, a gift from God to the community, a counseling group, a support group, a wonderful collection of people with warm, loving arms for parents who are trying to understand their children, for children who no longer have the loving arms of their parents..."

This in turn reminded me of the words written by a dear friend in an article in her church's newsletter for World AIDS Day 1994:
 
"...Both families have been touched by the same devastating disease - AIDS.  The families and churches have handled it very differently.  The prejudice which has torn Mike's family in two has been based on his sexual orientation and not his soul or heart.  Mike is just as valuable to God as Susan was but the people to which God entrusted their lives have treated them very differently..."

Matthew Shepard was lucky enough to have been born in (1976) the post-Stonewall enlightened era,  21 years after I.  His parents didn't buy into all the crap, but instead prepared and educated themselves with the aim of being unconditionally supportive and loving.  What a difference an era makes!!! 

"What are you doing the rest of your Life...?" I've always felt, especially since being diagnosed in '91, that the least I can or should do would be to share my experiences in such a way that having done so would make it easier, better, less scary for those who may follow me...

 Hhmm...  What a difference these last 18 years have made!  I may have made my peace, arrangements, payments and directives for my departure but I have long passed the span of time in which it was thought to have occurred!  WTF: Now it appears that I have options to consider other than HIV/AIDS and a longer term to plan for.

Y'All take Good Care...,
Michael
http://mwcltonline.spaces.live.com
"HIV is something you live with every day for the rest of your life. You may never die of It, but you will always die with it..."

Offline BT65

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Re: Early Aging -- New York magazine article
« Reply #109 on: November 08, 2009, 07:52:15 PM »
Assurbanipal, you brought up two things that interest me.  One is, of course, the diabetes.  Mine developed when I was in a coma.  I guess the feeding they were giving me through a tube had an extremely high sugar content, and apparently, from what I've been told, that's when it was diagnosed.  But, I wonder what led up to my pancreas not being able to handle that sugar?  I know when I was on Kaletra, my sugar ran higher than it does now (I just got switched to Isentress/Truvada).  I don't know if some of the meds I was on in the past had anything to do with it; but, quite frankly, I haven't researched it either.

The other thing you mentioned is the brain inflammation, and you mentioned having a higher than normal level of inflammation.  Were you talking about the brain?  And how did they measure it?  I'm very curious about that.  Thanks.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Assurbanipal

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Re: Early Aging -- New York magazine article
« Reply #110 on: November 09, 2009, 07:42:20 AM »
Kaletra / Truvada pushed my blood sugar levels (and cholesterols) up too, although not all the way to diabetes.  I moved off and am waiting for results.

The inflammation marker I had on my physical was a blood test result from cardioreactive protein for how the liver reacts to infection, inflammation or injury. 


5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline wow1969

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Re: Early Aging -- New York magazine article
« Reply #111 on: November 09, 2009, 08:08:48 AM »
You know, I hate HIV. I FUCKING HATE IT .....  I HATE MY EX FOR LYING AND GIVING ME THIS SHIT ...

Sorry, I read this thread last night and have had night mares all evening. I have two primary fears in life 1.) that i won't be able to take care of myself and 2.) that i would lose my mind. HIV looks like it will fulfill both my fears. I woke up crying and have been all morning. This article is the most terrifying thing I've seen in the last two years.

I know that other things can also contribute to memory loss. Stress has been shown to affect our memories and let's face it, having HIV is stressful. Not saying that aging, drugs and the disease aren't all contributing. I am saying that it might not just be one single thing but a combination of things. I didn't get out of the article that they had isolated exactly what was causing memory loss.

I didn't need to see this article. Hopefully, I will forget it LOL

Offline cityboy

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Re: Early Aging -- New York magazine article
« Reply #112 on: November 21, 2009, 10:00:14 AM »
I am positive since 2007.  I have always keep a good attitude.  After reading this article, I felt like someone knocked all the wind out of me.  I read all the comments and feel like I have just lost any reason for living.  I have just been crying all morning and cant stop
« Last Edit: November 21, 2009, 10:30:12 AM by cityboy »

Offline Inchlingblue

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Re: Early Aging -- New York magazine article
« Reply #113 on: November 21, 2009, 10:17:31 AM »
You know, there are also a lot of LTS who have very successful careers and are still productive, etc. I know some personally and as far as well-known ones that come to mind: Bill T. Jones, Magic Johnson, Regan Hofmann, Edmund White and many others. These people are still using their minds and bodies quite impressively.

Just saying, there are many faces to HIV/AIDS in general and to long-term survivors of HIV/AIDS, most of them not dire.

Offline bear60

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Re: Early Aging -- New York magazine article
« Reply #114 on: November 21, 2009, 10:27:52 AM »
Dear City Boy
If you are healthy and have had no HIV related illnesses, you are worrying about 'WHAT MIGHT HAPPEN".  This is where all of us get caught up in a trap (mind games) in which we worry about things that have not happened.  As a LTSer I can tell you that  enjoying living is a goal to reach for regardless of your HIV situation.  Count your blessings today...do you have a job? or are you in school ?  Do you have a boyfriend and are you two enjoying being together?  Hows the pet dog or cat?  What wonderful movie did you see this week? Just to name a few.

So...get busy with living.  Take care of your health and see you in a few years.

Joel
Poz Bear Type in Philadelphia

Offline cityboy

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Re: Early Aging -- New York magazine article
« Reply #115 on: November 21, 2009, 10:39:40 AM »
Dear City Boy
If you are healthy and have had no HIV related illnesses, you are worrying about 'WHAT MIGHT HAPPEN".  This is where all of us get caught up in a trap (mind games) in which we worry about things that have not happened.  As a LTSer I can tell you that  enjoying living is a goal to reach for regardless of your HIV situation.  Count your blessings today...do you have a job? or are you in school ?  Do you have a boyfriend and are you two enjoying being together?  Hows the pet dog or cat?  What wonderful movie did you see this week? Just to name a few.

So...get busy with living.  Take care of your health and see you in a few years.

Joel


The article scared me so much.  That's why I keep crying. My health was always great, this just always scares me that my mind will slow up and I will be retarded or I will break bones.  I just want to live and do the things that make life worth living. 
 I work.  I do not have a bf.  I do not have a pet.  I saw a Christmas Carol with my buddy who is a great guy.  I like him very much. 

Offline MWCLTonline

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Re: Early Aging -- New York magazine article
« Reply #116 on: November 21, 2009, 04:19:26 PM »
Code: [Select]
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http://www.cmt.com/videos/misc/454665/cmt-invitation-only-tim-mcgraw-6-live-like-you-were-dying.jhtml

He said I was in my early forties, with a lot of life before me
And one moment came that stopped me on a dime
I spent most of the next days, looking at the x-rays
Talking bout' the options and talking bout' sweet times.
I asked him when it sank in, that this might really be the real end
How's it hit 'cha when you get that kind of news?
Man what did ya do?
He said

I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'
And he said some day I hope you get the chance
To live like you were dyin'
]


Well, it's Sunday morning (11/15)  and here I am pondering why...  After I've survived and lived thru all the other stuff I have, it comes down to me & these damn critters
 
Pisces:  You need to figure out what's important to you and what's not. It's time to take stock of what's going on in your life. The good news is that your significant other, trusted friend or mentor is more than willing to talk about it, and they'll have just the perspective you need. All you have to do is call that all-important meeting. Don't be afraid to put your heart and soul on the line.
 
Think of today as a time of restoration for yourself, dear Pisces, in which you can come to a point of great ease and comfort. Trust yourself and the people around you. Open your eyes to the reality of the situation at hand. If you are currently working through some major changes in your life, make sure you have faith that whatever happens will work out to your benefit.
 
Just when you thought you had everything planned out and working smoothly, dear Pisces, (love) LIFE!  comes in and clogs up the works. Suddenly your attention is diverted and your concentration flies out the window as that dazzling being A BedBUG!  catches your eye. This could be a good thing or a bad thing,  depending on how you view the situation. Remember that both aspects of your life are important, and the key now is to find a healthy balance between the two.
 
Hhmm...   "WTF: Now!  I'm gonna Live...!?"  For this ...  I need a 'cookie'...
 
OK! So now its Monday, at least its not rainy! LOL...
 
"Freedom means the opportunity to be what we never thought we would be." -Daniel J. Boorstin  and   "We wander but in the end there is always a certain peace in being what one is, in being that completely. The condemned man has that joy." Ugo Betti


 ::) Kids!, I just passed my 18th milestone on My Journey and at this mile marker I have to pause to fight the "Battle of the BedBugs"!  :-[ I was in my late 30's when I stopped on that dime, but for me, as y'all, it was HIV  :-\  At that point in time, I had come to be a long time employee of Cincy's hottest gay dance/video bar, even had my test done in the parking lot when the mobile testing van made one of it's regular stops... ;)  There's a big, big difference between "what we know, what we think & what we can prove..." then and now!!! :o  ;D

Based on what I knew then and the resources I had available, I made sure that whatever was gonna happen, I had to have a home, health care and support.  After that it was makin' sure that my final arrangements were taken care of; so I wrote a Requiem and took out burial insurance which is now paid off and has increased in value!  ;)

At 54, I'm Living with AIDS -600+ TCells, Undetectable Viral Load; lymphadnopathy, hypertension, lipidemia, depression, 12 scripts, Living Trust, Will, Living Will, a planned Memorial service and paid-up Burial insurance.  My ID Doc says I'm not gonna die from it anytime soon, am fairly certain I couldn't get a job in this market if I had to and it works for me -Livin Like I was Dyin' in Freedom with a certain peace and Joy in being what one is  :-* 8)
Michael
www.mwcltonline.spaces.live.com, W 


 ??? :-\
The article scared me so much.  That's why I keep crying. My health was always great, this just always scares me that my mind will slow up and I will be retarded or I will break bones.  I just want to live and do the things that make life worth living. 
 I work.  I do not have a bf.  I do not have a pet.  I saw a Christmas Carol with my buddy who is a great guy.  I like him very much.

 ;) Well sd blue!...  You know, there are also a lot of LTS who have very successful careers and are still productive, etc. I know some personally and as far as well-known ones that come to mind: Bill T. Jones, Magic Johnson, Regan Hofmann, Edmund White and many others. These people are still using their minds and bodies quite impressively.

Just saying, there are many faces to HIV/AIDS in general and to long-term survivors of HIV/AIDS, most of them not dire. 

"HIV is something you live with every day for the rest of your life. You may never die of It, but you will always die with it..."

Online mecch

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Re: Early Aging -- New York magazine article
« Reply #117 on: November 21, 2009, 09:03:15 PM »
Edmund White and many others.
Edmund is a long-term non-progressor.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Inchlingblue

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Re: Early Aging -- New York magazine article
« Reply #118 on: November 21, 2009, 09:53:57 PM »
Edmund is a long-term non-progressor.

I've read he's a slow progressor, that's how he described himself in an interview, saying he expects to have to go on meds at some point.

But if EW doesn't count since, after all, he's been poz since the early 80s and has not started meds, I'll switch Edmund White with Tom Duane. ;)
« Last Edit: November 21, 2009, 10:30:49 PM by Inchlingblue »

Offline edfu

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Re: Early Aging -- New York magazine article
« Reply #119 on: November 21, 2009, 10:37:47 PM »
after all, he's been poz since the early 80s and has not started meds

Edmund White stated in a 2007 interview that he had started meds a few years previously:

http://en.wikinews.org/wiki/Edmund_White_on_writing,_incest,_life_and_Larry_Kramer

"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Inchlingblue

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Re: Early Aging -- New York magazine article
« Reply #120 on: November 21, 2009, 11:02:52 PM »
Edmund White stated in a 2007 interview that he had started meds a few years previously:

http://en.wikinews.org/wiki/Edmund_White_on_writing,_incest,_life_and_Larry_Kramer


Thanks for the update.

The interview I had read where he said he had not started was in 2005 so he must have started b/w 2005-2007 at some point. That's an amazing run for someone infected in the early 80's.

LINK:

http://img.thebody.com/legacyAssets/23/51/aug05.pdf
« Last Edit: November 21, 2009, 11:11:46 PM by Inchlingblue »

Offline edfu

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Re: Early Aging -- New York magazine article
« Reply #121 on: November 21, 2009, 11:14:00 PM »
It's in the section subtitled "On His Intimate Relationships."

 
That's an amazing run for someone infected in the early 80's.

Quite so.  I was also infected in the early 80s and didn't start meds until 2001; unfortunately, my counts crashed quite suddenly. 

"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Nestor

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Re: Early Aging -- New York magazine article
« Reply #122 on: November 21, 2009, 11:17:15 PM »
Quote
What difficulties have you encountered physically from being HIV positive? Has it been a difficult row to hoe?

EW: No. I found out I was positive in 1985, and I was probably positive already for five or six years at that point because I was very active sexually in the late seventies, early eighties. I would go to the St. Mark’s baths, which was very close to where I lived, and get fucked 20 times in an evening, so why would I have not been positive then? The first test became available in 1984, but I moved to Paris in late 1982 and I wasn’t really living near any place. So when I had the test done in 1985 in Zurich, the results had to be sent to America to be analyzed; we had to wait three months to get the results. That’s when I found out I was positive. I only started taking meds a few years ago.
DS: Why did you start?

EW: My doctor advised me to because my counts had dropped below 500, or something. They had always been around 700 for years and years. Suddenly it seemed like they were drifting faster and faster down. I thought if I took meds I would have more energy, and I did. I used to take two naps a day.

I'm a little bit surprised that he is so casual about it.  I understand HIV was not the theme of the interview and he wouldn't want to get too detailed, but saying "My doctor advised me to because my counts had dropped below 500, or something" makes it sound as if he barely pays attention to his own situation.  Then again, if he was not progressing for so many years, perhaps it was natural to lose interest in the question.  
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline edfu

  • Member
  • Posts: 1,084
Re: Early Aging -- New York magazine article
« Reply #123 on: November 21, 2009, 11:58:45 PM »
I'm a little bit surprised that he is so casual about it.   

Those who know Ed White have frequently debated whether this is just the way he wishes to come across in interviews or whether it's a coping mechanism.  In point of fact, there are those who believe he expatriated himself to Paris in 1982 because, among other reasons, he foresaw the horror that would befall the gay population of NYC at that time.  When he received his HIV-positive diagnosis in 1985, he has admitted, in other interviews, that he suffered a nervous breakdown and stayed in bed for almost a year.  This was at a time, of course, when the diagnosis was literally a death sentence.   
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline AlanBama

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  • Posts: 3,642
  • Alabama: the 'other' 3rd World Country!
Re: Early Aging -- New York magazine article
« Reply #124 on: December 16, 2009, 06:39:22 PM »
I've had a similar experience to jg.....I really do like my ID doc now, but he has tended to judge my health strictly "by the numbers".  BTW, I can put my numbers up against anyone's here, and come out looking fantastic.  T's in the 800s and VL undetectable.

However, I take a LOT of meds.  Three heart meds, due to congestive heart failure caused by bacterial endocarditis when I didn't have an immune system....I take a pretty good dose of anti-depression meds too, as well as BP, Cholesterol, etc.   Works out to about 24-25 pills a day.

My left diaphragm is paralyzed, which makes me wheeze a bit sometimes, and difficult to "catch my breath".  So yes, my numbers look fantastic.   But there's more to my total health picture than just the numbers.

The article is very disturbing to me.

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 minismom

  • Member
  • Posts: 2,608
  • Quocumque jeceris stabit
Re: Early Aging -- New York magazine article
« Reply #125 on: December 17, 2009, 05:42:47 PM »
Alan, this is exactly how our ex-PID treated Mim.  We were led to believe that, once her numbers improved and she became undetectable, she would suddenly be "fine".  So, when other things went south (her memory, vision, learning, muscles, etc.), we were sent to endless other specialist being told that it had NOTHING to do with her HIV because, after all, she's "better now".  We (she) was done a horrible disservice by not being given information about the other issues that arise simply by being Poz - regardless of what the numbers look like.

Perfect numbers do not always equal perfect health.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline blondbeauty

  • Member
  • Posts: 1,784
Re: Early Aging -- New York magazine article
« Reply #126 on: December 18, 2009, 08:13:27 PM »
I tested positive in 2005 but I probably contracted HIV in 2002. I have not seen any changes in me and I am 41 y/o. In fact most people think I am in my early 30´s, I am taking piano lessons and learning faster than most other pupils of my teacher...I don´t feel different in anything but I realize my experience for now does not mean the article in "wrong". Maybe I am being lucky.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Early Aging -- New York magazine article
« Reply #127 on: December 19, 2009, 06:21:43 AM »
I tested positive in 2005 but I probably contracted HIV in 2002. I have not seen any changes in me and I am 41 y/o. In fact most people think I am in my early 30´s . . .. Maybe I am being lucky.

Yes, Juan, you are lucky.

I have nearly a quarter century of living with HIV under my belt, and the misshapen body that goes along with having taken the early regimens that were dynamite in fighting the virus, but came with a price.

I now face the ravages of age, and the rapid aging brought on by living so long with the inflammatory effects of the virus combined with the toxicities of the meds, despite my best efforts at forestalling them with diet, exercise and clean living.

But, in my own way, I am lucky too. I am still here to talk about it.

HUGS,

Mark

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

 


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