Living without HIV drugs

[Guest cumdrainer4u]

Has anyone else seen and read about the people who claim they are better off without drugs. The site and info is very interesting! site is www.livingwithouthivdrugs.com

[HungLatinDom]

People can claim anything.

People claim Obama is a Muslim.

People claim Aliens stick probes up their asses

People claim that vaccines have no benefits and actually hurt people

People claim Jesus talks to them and tells them they should run for president

This deserves exactly the same credibility that those claims. The website is not interesting, it is misleading, dangerous, delusional and self serving.

[bearbandit]

Last time I stopped taking my anti-HIV drugs I dropped, on average 75 CD4 cells per month. I had good reason to stop in that the message from the clinics was that no adherence was better than poor adherency and having just had my partner die I couldn't see myself remembering to take each and every dose as prescribed. Five years later I still haven't recovered even half the "lost" CD4 cells. My "baseline" for this was also my all-time record high of 800+ and even I (with a chain of CD4 counts since the test was made available to the general public) was shocked at how my count plummetted.

[dickluva]

I stopped my HIV Rx September 2007, because i didn't trust my Doc of 18 years who had been a friend and confidant, I do not regret stopping. My health improved= weight stabilized, neuropathy, diarrhea, indigestion, lactose intolerance have all improved or disappeared completely. Check my posts or contact me for more information. I do not miss; waiting in waiting rooms, blood lab tests every 3 months, making co-payments, going to the pharmacy, or waiting for Rx in the mail, worrying that they might be stolen, or trying to remember to take the damn things, I do not miss fear that i wood forget an appointment, or to order Rx on time. Last time I had CD4 & VL checked new Doc agreed i should not be on meds, & we have not bothered to check since 2008. I'm not claiming anything, i 'm just saying American health care system puts profit before patients care. My POZ friends on meds are not nearly as healthy as i am. Med takers have issues that are direct consequences of the drugs.

[mike_thieriot]

I stopped my HIV Rx September 2007, because i didn't trust my Doc of 18 years who had been a friend and confidant, I do not regret stopping. My health improved= weight stabilized, neuropathy, diarrhea, indigestion, lactose intolerance have all improved or disappeared completely. Check my posts or contact me for more information. I do not miss; waiting in waiting rooms, blood lab tests every 3 months, making co-payments, going to the pharmacy, or waiting for Rx in the mail, worrying that they might be stolen, or trying to remember to take the damn things, I do not miss fear that i wood forget an appointment, or to order Rx on time. Last time I had CD4 & VL checked new Doc agreed i should not be on meds, & we have not bothered to check since 2008. I'm not claiming anything, i 'm just saying American health care system puts profit before patients care. My POZ friends on meds are not nearly as healthy as i am. Med takers have issues that are direct consequences of the drugs.

That's all fine and dandy for you, but anecdotes do not equal evidence. The fact of the matter is that anti-RV drugs DO help, otherwise they would never have passed the FDA's scrutiny. There is a vast amount of research and knowledge that explains exactly how and why these drugs work, and the simple fact of the matter is that they DO work. Anyone who tries to belittle their effectiveness obviously knows nothing of the decades of research and development and even more decades of clinical trials that go into each and every drug before it ever makes it into your hands, all so you can behave recklessly and not have to worry so much about the consequences (not that I don't do the same, mind you). To claim these drugs don't work without any proof is quite frankly insulting to the many brilliant minds, far smarter than any of us, who have dedicated and continue to dedicate their lives to searching for treatments and eventually a cure.

Edited April 25, 2012 by mike_thieriot

[cum2me]

the 'anecdote' posted by dickluva IS HIS EVIDEMCE!

IT WORKS.... IT IS HIS LIFE, AND HE IS SHARING HIS EXPERIENCE.

HOW DARE YOU REFUTE WHAT IS HIS TRUTH.

[HungLatinDom]

That's all fine and dandy for you, but anecdotes do not equal evidence. The fact of the matter is that anti-RV drugs DO help, otherwise they would never have passed the FDA's scrutiny. There is a vast amount of research and knowledge that explains exactly how and why these drugs work, and the simple fact of the matter is that they DO work. Anyone who tries to belittle their effectiveness obviously knows nothing of the decades of research and development and even more decades of clinical trials that go into each and every drug before it ever makes it into your hands, all so you can behave recklessly and not have to worry so much about the consequences (not that I don't do the same, mind you). To claim these drugs don't work without any proof is quite frankly insulting to the many brilliant minds, far smarter than any of us, who have dedicated and continue to dedicate their lives to searching for treatments and eventually a cure.

Not only FDA scrutiny, but just look around you. In the eighties gay men were dying by dozens, whole generation was almost wiped. In Africa, mortality rates were sky high. If ARVs are so dangerous and unhealthy, how come we do not see any of that anymore? Common sense. Some people do not develop AIDS over time, they might not need HIV drugs, but for the vast majority of infected people, the drugs are the only thing so far that will keep them alive, despite the side effects.

Cum2me: No need to write everything in Caps.

[GermanFucker]

the 'anecdote' posted by dickluva IS HIS EVIDEMCE!

That's why it's called ANECDOTAL EVIDENCE. The problem with anecdotal evidence is that because of the small sample (usually just one person) the data has little or no statistical relevance to the rest. One example: Let's say I won the lottery last week. That doesn't mean you will next week or that buying a lottery ticket is a good investment FOR YOU.

Only if you take a large enough sample group you can get to generalized conclusions. And even that doesn't allow to predict the exact outcome in one specific case. It only gives you a guideline as to what course of action might be sensible.

In the case of HIV the question is always: What is more doing more harm right now: The side effects of the medications or the constant damage the virus does to the body. The answer isn't necessarily the same for everyone:

On the one hand there are maybe 0.5% "elite controllers" whose bodies keep the virus in check by themselves plus another few percent of viremic controllers / slow progressors, who show very little progression towards AIDS. On the other side of the spectrum there are a few percent fast progressors who will progress towards AIDS within months and need to get on meds ASAP. The fact that elite controllers exist doesn't negate the truth that the vast majority fall somewhere in between.

Another problem with anecdotal evidence is the question of measuring success. There are quite a few "miracle healers" who tell cancer patients to go off chemo. Of course the side effects of the treatment stop, they look better and get paraded around, all while the cancer continues to grow. When the patients die a few months later, the charlatan has already moved on to his next victim. Just because someone looks or feels healthier doesn't necessarily mean he really is.

That's why anecdotal evidence can always be interesting, but one should take it with a grain of salt and draw one's own conclusions.

IT WORKS.... IT IS HIS LIFE, AND HE IS SHARING HIS EXPERIENCE.

HOW DARE YOU REFUTE WHAT IS HIS TRUTH.

Exactly: It works for HIM. And there is nothing wrong with sharing experiences. One just sholdn't mistake personal experiences for general truths or blindly imitate them. And one shouldn't advertise bullshit like the website does.

[marcsoton]

HOW DARE YOU REFUTE WHAT IS HIS TRUTH.

Presumably you also get overly excited by people who dare to criticise the religious nutjobs who think we should be physically exterminated. After all, that we should be exterminated for the good of society is their truth.

[PhoenixGeoff]

I stopped my HIV Rx September 2007, because i didn't trust my Doc of 18 years who had been a friend and confidant, I do not regret stopping. My health improved= weight stabilized, neuropathy, diarrhea, indigestion, lactose intolerance have all improved or disappeared completely.

No-one is suggesting that ARV drugs don't have side effects or that those side effects aren't often severe and difficult to manage. Of course those side effects would go away if you went off them. The general consensus is that the benefits of treatment (longer lifespan, basically) outweigh its costs, both financial and in terms of quality of life. And, of course, one reason we have such a wide range of different ARVs is to have the ability to tailor your treatment program to minimize those side effects.

I do not miss; waiting in waiting rooms, blood lab tests every 3 months, making co-payments [...] I do not miss fear that i wood forget an appointment, or to order Rx on time. Last time I had CD4 & VL checked new Doc agreed i should not be on meds, & we have not bothered to check since 2008.

I can understand your new doctor agreeing to let you remain off medication based on your numbers. What I cannot believe is that he or she would agree not to have your CD4 and VL counts checked at all. Not watching them is basically like sticking your head in the sand.

We all know the progression of HIV infection: an initial bout of flu like symptoms that goes away on its own, followed by years where there are no outward symptoms as the virus slowly multiplies and destroys the immune system, followed by the immune system reaching a point of catastrophic failure where opportunistic infections occur and eventually kill you. This has been well understood for decades, and is really only challenged by denialists.

It's also well understood that the whole point of ARVs is to keep you in that second phase, where there are no outward symptoms.

It's also well understood that ceasing ARV treatment does not result in instant AIDS, but merely allows the virus to resume its slow progression. That was established by the experiments with medication vacations (which are now generally discouraged because of problems with resistance that can show up and because the virus seems to rebound very quickly).

In other words, your experience is not surprising in the least. It does not mean that you can live indefinitely without treatment however.

i 'm just saying American health care system puts profit before patients care.

In which case, I'd advise you to see how HIV patients are treated in other countries with either government-run health insurance (e.g. Canada) or health care systems (e.g. the UK). These non-profit systems, all of which have much greater incentives to hold down costs than the US system does, all treat HIV in pretty much the same way.

[Guest cumdrainer4u]

Ihave been pozzed and will not go on meds ever wonder how long I have!

[youngcumdumpboi]

fuck hiv meds. never getting tested here and would never use the pieces of shit. i intend to enjoy my life and let nature take it course

[Guest cumdrainer4u]

sounds like we think the same

[HungLatinDom]

Guys, while it's your body, and you have right to do whatever you want, you might want to give more thoughts to these issues. Meds are not "pieces of shit", they keep many of us alive and well, and allowed the emergence of our bareback brotherhood. If AIDS would still be a death sentence, many of us would not be barebacking, we'd be too terrified to have condom sex.

I did not live those years of The Plague (yes, capitals), but since I am into older men, and many of them are positive, we speak about the subject and they tell me horror stories, when they were going to funerals about one a month because of dead friends. One of my friends went Vegan in the very early years, before we knew a lot about HIV and it was thought to be some kind of weird disorder. Another swore off sex for years, he was scared to infect others.

Here's a clip that shows a bit, exaggerated, but essentially true, what life was for many. The first three minutes nail it:

http://www.youtube.com/watch?v=eIgqtGFx_Ec

http://www.youtube.com/watch?v=eIgqtGFx_Ec

The wife (yes, wife) of a friend of mine decided to stop therapy, she died last week of AIDS related pneumonia. Not pretty. So, think carefully, ask guys who are already positive and on meds.Letting "nature takes its course" might sound poetic, but it's not, painful, messy, slow, full of issues and lectures from your doctors and close ones. If you want to commit suicide, there are less painful and emotional ways.

And, I suggest you show more respect for HIV meds. You might not be interested in them, but they are what keep many of us alive and able to keep breeding and being bred. We try to keep a civil conversation here, and people can get offended by statements as yours, this could become a flame war of nasty comments. So, let's try to chill out a bit.

Again, I am not an authority (I'm not speaking as a moderator here), and your body is yours, but as the disease wrecks you, you might change your mind. Enjoying your life and not taking meds once you get a low CD4 count are mutually exclusive goals.

[Hotload84]

I have only known one individual who took the 'no meds' approach, and opted for his own treatment regimen. He lived about ten years and then died in 2004 of the maladies that today are generally held in abeyance by the antiviral medications. He apparently had a change of mind about the antiviral medications, but by the time he broached the subject with his doctors, his system was too badly damaged to recover. Presumably he would still be around had he opted for conventional treatment sooner, rather than later. He was a neat guy - I miss him.

Edited May 28, 2012 by Hotload84