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
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.
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.....
The first person in the story was diagnosed in 2001, not decades ago.
Some things can be prevented: dementia by constant learning, bone density loss by taking calcium supplements...
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?
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'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.
...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.
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
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! :)
dementia by constant learningMy 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.
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. ::)
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.
A lot of posts in this thread is why, with issues like this, I stick to the LTS'ers forum.
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.
Max, is that what you think we do-put our heads up our asses?
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)?
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).
Just take a look at Magic Johnson as a case in point. You be the judge.
The more I read that post the more offended I become.
I see poop heading towards a fan . Jeff , who is running back to the safety of the LTS forum .
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.
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.
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.
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.
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.
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
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
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 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.
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.
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.
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
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 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.
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.
Well said..
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.
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
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.
and to compare Aids to buying shoes is insane, at least to me.It is a rhetorical device called metaphor. You take it literally.
;) 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!
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
<embed src="http://media.mtvnservices.com/mgid:uma:video:cmt.com:454665" width="416" height="343" type="application/x-shockwave-flash" FlashVars="configParams=&vid=454665&%26startUri=mgid:uma:video:cmt.com:454665" allowFullScreen="true" AllowScriptAccess="always" base="."></embed> <div style="margin:0;text-align:center;width:416px;font-family:Verdana,sans-serif;font-size:12px;"> <a href="http://www.cmt.com/shows/" style="color:#EC660C;" target="_blank">More CMT Shows</a> <a href="http://www.cmt.com/video/" style="color:#EC660C;" target="_blank">More CMT Videos</a> </div>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.
Edmund White and many others.Edmund is a long-term non-progressor.
Edmund is a long-term non-progressor.
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 (http://en.wikinews.org/wiki/Edmund_White_on_writing,_incest,_life_and_Larry_Kramer)
That's an amazing run for someone infected in the early 80's.
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 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.