Honest discussion about poz health

[thick]

Im an old survivor. I believe i was infected in 1987. took me 10 years to really start getting full blown AIDS. I finally dragged myself to the doctor who diagnosed that I had zero Tcells and a 6 million viral load. I almost died. They put me on Combivir, and viracept, and I also had to take this shit called myambutol for a bone marrow infection. All I can say is Im alive and Im thankful for that. BUT the AZT in the combivir gave me myopathy in my ankles and lower legs. myopathy=muscle damage. The viracept caused terrible diarrhea. To the point where I would have to take other meds to stop me from shitting my pants.

Anyone recently pozzed has it so much better. The drugs have been refined. They target the virus with less sides. You dont see many guys with the fatty humps, belly fat, bulging eyes.......You dont see men walking with canes at the cinic anymore. Its a better world now.

At this time I am taking Lexiva, norvir, and epzicom. I dont have any pronounced side effects from these.

[HungLatinDom]

My experience has not been bad at all, but my VL is still under 10K and my T cells over 600, after 4 years.

I fuck a lot, still, very few STDs.

[makingwords]

Thanks HungLatinDom. You mention you aren't on meds after 4 years. Have you ever been on meds? If not, have your doctors ever tried to put you on meds? If I test poz I think I would like to avoid meds for as long as possible, but from what I understand the medical policy these days is "hit it early and hit it hard." What do you think about all that?

[bearbandit]

I promised myself I was going to stay out of this one after TigerMilner's excellent answer. Using today's knowledge to apply to then I seroconverted in 1980, was diagnosed poz in 87 and with aids in 91. I'm pretty much on my last round of meds until something new comes along, having been through all the conventional combinations (and a few unconventional ones) that don't include abacavir for which I've got the wrong genes. We're at a point now where I think "hit it early, hit it hard" is a reasonable strategy (though note that I live in the UK where the CD4 threshhold is 350 rather than 500 in the US). The bulk of my medical problems have come from being switched to drugs that were only just out of testing rather than from HIV itself. But that was how you changed drugs then, limping from one to another in the hope of the one that worked properly.

Today's standard combinations amaze me when I look back at the days of AZT monotherapy and there are only two I would be cautious of. The first is efavirenz/Sustiva which can have pretty weird CNS effects like very trippy dreams: as a friend said "it's like free acid". The other is tenofovir/Viread which is one half of the drug used for PEP and PrEP. It can in rare cases affect the kidneys and bone strength considerably. Damn near killed me this summer (literally: if I'd refused to into hospital the police were waiting just round the corner to enforce my being sectioned for my own good - sorry don't know the American term).

If you're thinking of starting medication, it's entirely your choice. I'm an advocate of hit it hard and fast, but 350 is, in my mind, time to start thinking about it. 250 I'd go for meds (I start getting minor opportunistics when I go below 300). This paragraph is not medical advice: in fact the whole message is just my personal opinion and experience. Hope you find it helpful...

[makingwords]

Today's standard combinations amaze me when I look back at the days of AZT monotherapy and there are only two I would be cautious of. The first is efavirenz/Sustiva which can have pretty weird CNS effects like very trippy dreams: as a friend said "it's like free acid". The other is tenofovir/Viread which is one half of the drug used for PEP and PrEP. It can in rare cases affect the kidneys and bone strength considerably.

Thank you bearbandit. I'm sorry to hear of your recent complications. So if not Sustiva or Tenofivir, what would you recommend as a starting point?

When you say you're "on your last round" of meds do you mean you've tried them all and there's only one that still works for you? Is that alarming or pretty routine?

Thanks again for taking the time to share.

[bearbandit]

I'm not a pharmacist, so it's difficult to say what would be a good starting point. I'm not keen on efavirenz because of the CNS effects which can hang on to the next day. Tenofovir is a damn good drug, but you really do need to keep up at least quarterly blood checks: what happened to me was literally one in 100,000. A good sources of information re startup combinations is http://www.aidsmap.com/ . Personally I feel it's time that efavirenz was taken off the market.

"last round of meds" - Not the first time I've been here, and I doubt it'll be the last. Of what's currently available I'm making the best of a bad lot. They don't fit together well and I've got a greater chance of (yet more!) side effects, yet I've been lucky enough that I have had few combinations disrupt my life so little. After all this time it's got to be routine: I just have to keep going until something new comes along.

Again, hope this helps...

[makingwords]

Thank you bearbandit. It does indeed help. Good luck with sorting out your meds situation.

[Bbikercub]

"last round of meds" - Not the first time I've been here' date=' and I doubt it'll be the last. Of what's currently available I'm making the best of a bad lot. They don't fit together well and I've got a greater chance of (yet more!) side effects, yet I've been lucky enough that I have had few combinations disrupt my life so little. After all this time it's got to be routine: I just have to keep going until something new comes along.

[/quote']

I'm not sure I understand. When you say last round again, I'm guessing you've changed meds lots? Why do you need to change?

Is it not a case of you find some that work and stick with them? Or does virus actually fight the meds?

I know that if guys aren't strict in following their regime the virus can adapt, but over a long time on one group of ARVs can the virus also adapt?

(Not including co-infection here though I know that can also lead to meds no longer being effective).

[bearbandit]

It's more a case that some meds are contraindicated with others: For a long time high dose ritonavir was going to be the ONE until people noticed that people realised that it was causing high cholesterol and diabetes. Then someone noticed that at a much lower dose it actually help other drugs of its class stay in the body longer, meaning these drugs could be prescribed at a lower dose.

I've had to change drugs so frequently because of the side effects I've had from them. If one drug has already caused diabetes, it's a nonsense to take another drugs that causes further pancreatic damage. Even with good adherence it's possible for the virus to mutate; often the first realisation of this is that the viral load goes up high enough for a resistance test (resistance tests only work above 1000 or so VL). Sometimes it's the case if you become resistant to drugs from one family than you'll probably be resistant to other members of that drug family without having taken them.

Sometimes it's changes within your own body that stop a drug working. At the same time tenofovir was doing a number on me atazanavir/Reyataz decided to join in and have a go at my liver. Why? I don't know, but they have plenty of my blood to play with. Don't forget that the study of HIV is a developing science: for example, no-one thought to study HIV gerontology because it was though that there'd be no need. Now a bunch of us are in our fifties , sixties and seventies wondering if that pain is caused by an HIV-related illness or "just" an illness of old age.

[Bbikercub]

Thanks bearbandit, that helped my understanding a lot.

[AgentColby]

Hey guys

Neg bottom here. Really actively started taking loads this past year and am totally honest with myself that I may test poz at some point in the future. I know it's a typical consequence of fucking raw.

My question for the poz guys here is: how has being poz affected your health since you seroconverted? I know it's different for everyone but I'm curious. Is it just the nuisance of the daily pill? Do you find yourself getting sick more often? Picking up more STDs than usual? Have you noticed the typical physical symptoms of wasting, redepositing of fat, etc. that we hear about?

What about is the best and worst thing about being poz?

Would love to hear the honest truth of what life is like with a poz diagnosis.

Thanks guys. And Merry Christmas.

You sound like me. I became exclusive barebacker at about age 20. I tested poz at the age of 29, 9yrs later. When I decided to become active BB'er, I made the decision knowing full well the consequences and all the risks involved. Please, I was NOT a bug chaser and in no way seeking to become poz.

When I converted, I knew immediately. I got the "fuck flu" and I had enough poz friends to know the signs. Four of my poz friends recommended the same doctor to me and he immediately placed me on meds. Within few weeks I became undetectable.

I have not had any problems whatsoever with side effects. Keep in mind that a lot of the side effts of HIV, especially lypodystrophy (sp) are quite uncommon these days. The new meds we have drastically lower such occurance. It is mostly associated with long term poz people who were on the old HIV meds.

As for STDs. Although I am having more sex than before, I have not experienced any STDs. From time to time I involve myself in play parties or multiple fucking but for most part, I fuck with guys I know and have known.

If you do test poz, my advice is to ensure you have a good doctor. I would get one that specializes in HIV and even better if they are gay. My doctor is gay and specializes in HIV and gay men's health. This helps a great deal b/c I am able to be VERY honest with him. He knows I actively BB and have an active sex life. I do not hide my sexual activity from him b/c he knows that when I come to his office, he automatically includes STD testing as part of my blood work. My last visit with him was few weeks ago and I fully revealed to him that a month before I went to Florida and had 5 sexual partners while there. He knew the drill to order STD testing.

Edited December 28, 2012 by AgentColby

[HungLatinDom]

Thanks HungLatinDom. You mention you aren't on meds after 4 years. Have you ever been on meds? If not, have your doctors ever tried to put you on meds? If I test poz I think I would like to avoid meds for as long as possible, but from what I understand the medical policy these days is "hit it early and hit it hard." What do you think about all that?

I would love to be on meds, but my life is very, very, very weird. Next year I could be homeless. In two years, I could become a millionaire. None of those outcomes are likely, but both are indeed possible. I am an expat, I am not in my native country anymore, I might be in the US by 2014, but I also could stay here where I am for the rest of my life. So, my life is changing and not stable at all. Now I have a bit of stability, but it's only since this month. So, I have decided that I won't start treatment until I really need it or until I have true stability in my life. It's much worse to start and then stop than to begin a bit late, that I know. That, in short, is why I am not on meds yet.

[makingwords]

I would love to be on meds, but my life is very, very, very weird. Next year I could be homeless. In two years, I could become a millionaire. None of those outcomes are likely, but both are indeed possible. I am an expat, I am not in my native country anymore, I might be in the US by 2014, but I also could stay here where I am for the rest of my life. So, my life is changing and not stable at all. Now I have a bit of stability, but it's only since this month. So, I have decided that I won't start treatment until I really need it or until I have true stability in my life. It's much worse to start and then stop than to begin a bit late, that I know. That, in short, is why I am not on meds yet.

I understand and that makes sense. So I assume you have a doctor you see regularly (how often?) to keep track of your viral load and CD4? And as long as those numbers look good you don't NEED to be on meds right?

[HungLatinDom]

I understand and that makes sense. So I assume you have a doctor you see regularly (how often?) to keep track of your viral load and CD4? And as long as those numbers look good you don't NEED to be on meds right?

I have no doctor, will start seeing one here in January, but I do keep track of my CD4 and VL count. I used to go back home to get tested and study my results, I am biologist, so I understand what's going on when I see the data. Had I seen my CD4 count drop under 500, I would have gotten a doctor, but that has not happened (yet), and honestly, I am bit concerned about the virus free on my bloodstream, infecting, but not killing yet my T cells.

One of the reasons I have been able to get out of my homeland is because I work for RawTop, and I got this job because I started barebacking after I serconverted and got into reading his blog. So, HIV has given me a better life, beyond sexuality. When I first got infected I started working out, but then I had to move away from my bf and dropped it, but I do need to get in shape again.

[Hornyone]

I found out I was positive two years ago now, I am still not on meds. I get blood test every four months and I am being followed by an infectious disease DR. So far my numbers are really good and only getting better every time I see the DR. I just saw him two weeks ago, and again my numbers were better then the last time my cd4 is up and my viral load is down. He is not recommending meds for me yet, because like I said for the last two years every time I get my results they are better then the previous time and this is with out being on meds.

When I was first diagnosed my viral load was 5647 and my cd4 was 794 two years later and no meds and my viral load was at 500 and my cd4 was at 1381. I am wondering has anyone else experienced this? My Dr tells me I am his best patient (number wise) and he does seem a little surprised by my results. He has mentioned to me about the " hit hard and hit early" theory but with my numbers he is still not recommending meds.

Physically I do not feel any different, I do not get sick very often or it is not like I am getting sick more often now. I do keep wondering wether I should go on meds to become undetectable and just get it over with. I have insurance so the meds will hardly cost me anything so it is not a financial issue, but then I keep getting these good results and I end up saying fuck it no meds for now.