Something to consider about being unmedded, from a poz unmedded pig..

[Guest PozGoat]

I was pozzed sometime between oct '07 and Oct 2008. I've narrowed it down to that timeframe. I remember having a bad bout of flu-like symptoms during that time and that was likely my conversion.

I've been diagnosed as a non-progresser meaning that my HIV isn't advancing. It's not getting any worse. I have a very strong immune system. My latest(July) labs showed my T-cells at 1380. My viral load came down to 550. Down from 1100 back in Apr(I was then syphillis poz at that time and likely had an upward blip in my HIV viral load due to syph)

We were able to genotype my viral strain and found out if I ever need meds that I'm a-ok and not resistant. Viral load needs to be about 1000+ in order to get an accurate genotype, so I was actually lucky that it went over 1K.

I actually tested poz and was confirmed poz in Aug 2010. Since then my T-cells have stayed above 1000. My viral load usually hovers around 200 but due to syph, it went up. A shot in the ass cured the syph and now my viral load is coming back down to 500 and falling. My % is 46.

My doc and I agree, HIV will likely never progress in me, unless I get extremely sick with something else. Syph did appear to raise it somewhat. While my doc says a non-prog diagnosis is really never certain, i'm likely a non-prog.

I hardly ever get sick. That bout of fuck-flu several years back was my last illness. I never get the flu or colds.

So I think it's safe to say I am lucky to have a strong immune system. I attribute a big part of my immune strength to a very healthy, plant-based diet. I recommend all HIVers eat as healthy as you can. I'd be glad to share eating tips.

Back to the thread title, the 'something to consider'..

I still get pressured somewhat from my doc to consider going on meds. He's not really pushy or anything but he does bring it up during my regular appointments. I love my doc and he is a leading HIV specialist. He has advanced the science of treating HIV and performed 100's of HIV med clinical studies for experimental drugs that eventually have us winning the war against AIDS wiping us all out. He's been at the forefront of advancing the science since the early 90's. He was one of the first to call for lowering dosage to reduce toxicity in HIV meds and meds starting bringing people to undetectable without killing them from poisoning.

I feel lucky to have him as a doc. The best advice that I can give to any fellow pozzer is to find yourself a good, caring, compassionate doc that knows how to treat gay men. My doc is a poz fag and I have a feeling we will be fucking each other silly soon, but in the meantime, he's been a positive life changer for me.

Find yourself a good doctor. If nothing else, ask here. If you have to travel to find a doc, it's worth the trip. If nothing else, you can then have your local doc work with the HIV specialist that's far away.

Now, the bad side of staying unmedded, this may apply to many..

A former partner of mine, we ended our relationship when I moved to another city in 2005, was poz for about 10 years at that time and decided to go off his meds. He was near UD at the time. Upon going off meds his viral load skyrocketed and did so very fast. 4 months later, he was VL 10K. 8 months later he was 200K. His doc was quite angry that my buddy went off meds and actually banned him from being his patient. The doc refused to allow my buddy to schedule appointments with him ever again. The doc told my bud, if you don't take your HIV meds, no more appointments.

......

So, in closing, just to raise a bit of awareness of what to expect if you become poz, be prepared to be hounded by your doc. You'll likely have some serious explaining to do if your HIV is advancing and you decline meds. I don't want this to sound preachy at all. Just raising awareness. Something to be prepared for.

Lastly, guys, please find a good doctor. we've lost too many gay men to this already. I understand being unmedded and I never preach to go on meds. It is your choice and I respect your choice very much. Just please, don't die an early death from HIV. We've lost an entire generation of gay men to this disease. It's treatable nowadays. No more death!

Happy hunting, sexy fuckers!

[fillmyholeftl]

That's a great, informative & compassionate posting. I work in some HIV education & counseling programs here in FT Lauderdale. You touched on a lot of key points !

[Guest PozGoat]

Thanks Fill! There's a special place in my heart for those that work to improve the health and lives of HIVers.

Too bad FTL is so far away from where I'm at in Chicago. I'd fill that hole with evil.

Peace and hugs.

[rawTOP]

I still get pressured somewhat from my doc to consider going on meds. He's not really pushy or anything but he does bring it up during my regular appointments. I love my doc and he is a leading HIV specialist. He has advanced the science of treating HIV and performed 100's of HIV med clinical studies for experimental drugs that eventually have us winning the war against AIDS wiping us all out. He's been at the forefront of advancing the science since the early 90's. He was one of the first to call for lowering dosage to reduce toxicity in HIV meds and meds starting bringing people to undetectable without killing them from poisoning.

I used to be in pharmaceutical marketing. We'd look for "thought leaders" who could influence other doctors. We then contacted the thought leaders, took them to very expensive resorts where they had to listen to the pharma guys talk before they could go out and play golf / ski / etc. Unlike educational programs these pitches did not have to be balanced - they were only what the pharma company wanted doctors to hear. The other side-effect was that many of the doctors would feel like they owed the pharma company for a free vacation. Then we'd send those thought leaders out to convince other doctors about how great it was to prescribe the pharma company's drugs.

It doesn't surprise me one bit that your doctor is pushing you to take meds when you don't actually seem to need them. Take a look at his research - I bet it's all paid for by pharma companies, and I bet he goes on those free vacations pretty regularly.

After my lover died in early '95 his social worker and I went out for lunch. She made a comment which I'll never forget - "Dr. G. is great and everyone respects him and he's done all sorts of research, etc. - but it seems like all his patients die." On a more personal level, I've had the chair of neurologyand the chief of neurosurgery at Memorial Sloan Kettering as my doctors before and it was some of the worst care I've ever received - they did a completely unnecessary biopsy of my brain and demanded I stay on meds I didn't need despite the fact that I was having side effects.

I agree - find a good doctor. But personally I think "top doctors" are dangerous. They get ideas in their head and want all their patients to conform to those ideas - they often don't treat the individual or think outside the box. These days I prefer the highly competent, smart guy who toils in obscurity.

[TattPig]

"The doc told my bud, if you don't take your HIV meds, no more appointments."

That makes perfect sense. If he's not going to follow the doctor's advice, why should he bother seeing him? He quits meds (obviously against doctor's orders), VL skyrockets (duh) and we should be surprised that the doctor lays down the law? Nope.

The doctors may not always be right, but they are far more likely to be right than a patient who's just winging it, with no training. And when faced with empirical evidence that your actions are hurting you (spiking VL), the solution is to listen to the doctor. Or find a doctor who doesn't care what you do, and see how well that works out for you.

[rawTOP]

"The doc told my bud, if you don't take your HIV meds, no more appointments."

That makes perfect sense. If he's not going to follow the doctor's advice, why should he bother seeing him? He quits meds (obviously against doctor's orders), VL skyrockets (duh) and we should be surprised that the doctor lays down the law? Nope.

I gotta disagree for several reasons. First the most personal - I had a "top" neurologist (chair of neurology at Memorial Sloan Kettering - one of the top cancer hospitals in the world) tell me that if I wanted to go off Dilantin (an anti-seizure drug) I needed to find another doctor. That was just a dangerous thing to tell me. If you stop taking Dilantin suddenly it can cause a seizure even if you don't have seizures. I'd gone off it previously and took myself off it over a number of months. During that time there were moments where I nearly blacked out. She had a duty of care to me that she failed to act on. She didn't even have the talk with me about how to go off Dilantin safely. And on top of everything else she was wrong. I knew my body better than she did. She had the results of two biopsies and refused to believe the results - she was treating me for something I didn't have. She would have learned something if she hadn't turned me away. But she thought she was better than that. I had insulted her pride simply by asking to go off meds. Her pride shouldn't have been a factor in my care.

In this particular case the question the doctor should have asked is "why?". His patient may need psychological help. Take Spencer Cox. The last thing someone like that needs is "tough love" or "laying down the law". Again, it sounds like an asshole doctor who cares more about his pride than his patients' health. The correct response would have been "I'll continue to see you - but only if you see a shrink." IMHO, he failed in his duty of care to his patient. Patients have the right to refuse treatment - doing so doesn't end the doctor's responsibilities to the patient.

[TattPig]

"Again, it sounds like an asshole doctor who cares more about his pride than his patients' health."

Why should he care more about his patient's health than the patient does? I don't think that an asshole attitude at all. It would be the same for insulin or any other drug, or not obeying dietary restrictions, etc. If the patient's not going to take advice from the doctor, why bother giving it?

The corollary to "...if you don't take your HIV meds, no more appointments." is "...if you take your HIV meds, I'll be glad to keep seeing you." Perfectly reasonable.

[rawTOP]

"Again, it sounds like an asshole doctor who cares more about his pride than his patients' health."

Why should he care more about his patient's health than the patient does? I don't think that an asshole attitude at all. It would be the same for insulin or any other drug, or not obeying dietary restrictions, etc. If the patient's not going to take advice from the doctor, why bother giving it?

When I wanted to go off Dilantin I cared more about my health than my doctor did. When Spencer Cox went off his meds he probably needed to talk to a shrink - pushing someone like that out of the medical care system can kill them.

I had an NP tell me "well, if you don't care about your health, why should I?" simply because I liked to be a bareback top and I'm neg. It was a considered, well-researched decision on my part. There's more to my life than my health. I made a decision and it wasn't very professional of her to pass judgement once I made it clear it was a conscious choice on my part that had a lot of thought go into it.

So I reject the argument that the patient cares less about themselves than the doctor - at least in most cases.

[bearbandit]

Difference between the US and UK health care systems... I can feel fairly sure that if I went to the clinic tomorrow and said that I wanted to stop all HIV meds they'd first try to argue me out of the decision, but then acquiesce asking me to keep up quarterly appointment so my CD4 and VL could be monitored. I've taken an HIV meds holiday before, after the death of my partner (I didn't think I was up to maintaining the adherence to meds that's required for successful treatment). During that holiday I lost about 70 CD4 per month and only went back onto meds when my CD4 hit >200. The clinic weren't happy about what I did, but short of having me committed to a mental ward, they had no choice, either about accepting my decision or their part in what was a potentially life-threatening situation for me.

Run forwards a few years and I've just moved to a new town and am suffering from Fanconi's syndrome (tenofovir poisoning). This time when they wanted me in hospital, there was a police car around the corner just in case: the committal papers had already been drawn up. A reasonable response as they didn't know me, the mineral depletion was such that I lost over a quarter of my body weight and was only occasionally lucid in between the hallucinations.

There's a much more "partnership" relationship with UK doctors, though you have to push for it to come through. My consultant likes grandstanding, and as I'm "unusual" I often have students sitting in on consultation (well they gotta learn somewhere, and if I get the chance the first thing I tell them is my doctor's an asshole).

When I was in hospital last year I was prepped six times for a gastroscopy (a procedure that terrifies me: I have the gag reflex from hell and have disappointed many well hung men). Turned out that the reason for the gastroscopy was my inflamed liver... "I've known about that since 2004 and it's made no difference, why worry now" - I wasn't put on the list again.

If a doctor isn't a partner in your healthcare, then they're no doctor.

[TattPig]

"So I reject the argument that the patient cares less about themselves than the doctor - at least in most cases."

You're arguing against something that I didn't say. I wasn't speaking in generally. I was speaking about a specific patient in the OP's first post, whose VL was skyrocketing. That's very different than a theoretical risk of barebacking. One has a minor risk (as a neg top) about which you made a decision; his was clearly a life-threatening choice that he could see the direct evidence of at 4 and 8 months.

When he went on the drug holiday he entered unknown territory with risk. At 4 and 8 months he was no longer in unknown territory and it was time for a smackdown. What was the doctor to do when the patient rejected treatment? Give him aspirin? Antacids? Vitamins? Snake oil? The doctor has no other option besides ARVs. If the patient won't take them, the doctors can serve no role in maintaining his health. That patient put the doctor in an untenable position.

[rawTOP]

When he went on the drug holiday he entered unknown territory with risk. At 4 and 8 months he was no longer in unknown territory and it was time for a smackdown. What was the doctor to do when the patient rejected treatment? Give him aspirin? Antacids? Vitamins? Snake oil? The doctor has no other option besides ARVs. If the patient won't take them, the doctors can serve no role in maintaining his health. That patient put the doctor in an untenable position.

The doctor's job is to be there for him. Period. It's not about the doctor, it's about the patient. The doctor can be unequivocal in his assessment, but cutting off care is a step too far.

[Guest PozGoat]

I used to be in pharmaceutical marketing. We'd look for "thought leaders" who could influence other doctors. We then contacted the thought leaders, took them to very expensive resorts where they had to listen to the pharma guys talk before they could go out and play golf / ski / etc. Unlike educational programs these pitches did not have to be balanced - they were only what the pharma company wanted doctors to hear. The other side-effect was that many of the doctors would feel like they owed the pharma company for a free vacation. Then we'd send those thought leaders out to convince other doctors about how great it was to prescribe the pharma company's drugs.

Rawtop, thanks for that informed perspective. You're correct too. Doc's are the final step in big pharma sales. They are the real saleman for big pharma. W/O that doc's prescription, there would be no drug sales. About every other appointment, there is a rep/salesman sitting in a suit in the doc office waiting room. Waiting for a 'consultation' (sales pitch) with my doc. My doc owns his small practice/clinic. My doc does all of the pharma sales consultations whenever a new drug hits the market, there's sure to be a salesman forcing their way into the doc's office, forcing a sales pitch..

Doc's aren't innocent in this scam. Most get nice kickbacks and commissions for prescribing these insanely expensive and usually toxic meds. Modern meds are getting better but are still toxic in many cases. The scam is the insane cost/price. For instance, patents ran out on insulin decades ago, so big pharma developed these new fancy 'flex-pens' and patented them to deliver an individual dose of insulin, in doing so, they secured the right to charge about $500 a month for insulin that costs a few bucks if you were to just go get an actual vial and draw up your own injections with a regular syringe.

Big pharma is a disgusting scam. It's why I say capitalism can fuck off and go die. If this is what capitalism is, profit over people, then I hope it dies. Until then, we're thrown to the wolves to try our best to fend for ourselves. But that's a whole other debate.

I talk about some of this stuff with my doc. I get a heavy sense from him that he is fed up with drug companies and sick of being hounded by them. Sick of saleman consultations, sick of their sales pitches. He talks quite freely with me about healthy living to avoid toxic prescription meds but won't hesitate to prescribe if warranted. He even recently told me that he thinks that I may never need meds to survive, but that I may need them if I ever want to truly go to undetectable. My VL usually hovers around 200. Very low but not quite undetectable.

He made a deal with me. That he'd ask me at each appointment if I want meds, I am free to decline them, but in doing so, at least he feels he has asked me mostly in the sense of covering himself. He asked, I declined, that kind of thing. I don't have RX coverage atm, so he learned long ago that if he is going to prescribe me anything, it's got to be generic LOL. He gave up long ago on trying to prescribe me anything expensive LOL!

I'm a $4 generic patient or nothing!

But you're still correct to say that docs are basically the last part of the chain of drug salesman. Its a corrupt scheme, no doubt about that.

If docs refuse to be salesman for big pharma, if they refuse to overprescribe then big pharma has said docs blasted in medical journals like the AMA etc.

So, even the honest docs are held hostage by this Fascist corporate conformity. Sell their drugs or they'll make life a living hell for said docs.

I still love my doc. I dont fault him for being held hostage. He still rebels against their game when he can, but being a prescriber of HIV meds can force him into a level of adherence to big pharma's game that is even worse than what most docs deal with. An HIV doc's office will usually see a string of various big pharma drug salesman walking in and out of said office. Like you said, I'm sure he gets invited to exclusive resorts by big pharma for a big sales pitch.

[Guest PozGoat]

"So I reject the argument that the patient cares less about themselves than the doctor - at least in most cases."

You're arguing against something that I didn't say. I wasn't speaking in generally. I was speaking about a specific patient in the OP's first post, whose VL was skyrocketing. That's very different than a theoretical risk of barebacking. One has a minor risk (as a neg top) about which you made a decision; his was clearly a life-threatening choice that he could see the direct evidence of at 4 and 8 months.

When he went on the drug holiday he entered unknown territory with risk. At 4 and 8 months he was no longer in unknown territory and it was time for a smackdown. What was the doctor to do when the patient rejected treatment? Give him aspirin? Antacids? Vitamins? Snake oil? The doctor has no other option besides ARVs. If the patient won't take them, the doctors can serve no role in maintaining his health. That patient put the doctor in an untenable position.

Tattpig, there is much truth to what you say. Docs are as unique as the rest of us. They are individuals that can vary greatly in the way they treat patients, they way they handle patients, they way they handle a patient they see as difficult, or a patient that doesn't adhere very well to docs advice etc.

When my former partner was going through his ordeal years back(the guy who went off his meds), I got the sense that his doc wasn't a very compassionate doc, and that he wasn't very compassionate toward treating gay men, just the vibes that I felt when we would talk about his doc appointments. And I had felt this vibe long before said doc refused to schedule appointments, long before he went off meds. I'd even encouraged my partner to find another doc long before going off meds and before that whole nasty thing went down about his doc refusing future appointments.

The unique nature of docs means that some will stop seeing patients that refuse to adhere to a docs advice, some docs will continue to see said patient. IMO the more compassionate docs will never refuse to continue giving care to a patient. My doc has many patients that refuse HIV meds and he still continues to give them care. But he is somewhat unique in that regard.

That's part of why I recommend that gay men seek out a compassionate doc that is gay-friendly etc. My advice to anyone, ask local gay org's for a good doc recommendation, or just ask gay friends who they'd recommend.

[TattPig]

"The doctor can be unequivocal in his assessment, but cutting off care is a step too far."

The doctor didn't cut off care--the patient did! The doctor can give NO care to a patient who won't take the only meds that can save him. To continue to see a patient and take money for those services borders on fraud.

This isn't about big nasty big Pharma and the grandiose conspiracy theories of pharmaceutical marketing.

Maybe he was a crappy doctor, as Rotten later explains. But laying down the law to a noncompliant patient doesn't make him wrong, or evil, or complicit with big Pharma. He was forced into a corner by a patient who ignored all the evidence. He could do absolutely nothing for that patient to prolong his life; the ball was entirely in the patient's court. All he had to do was to start taking the meds. That's it--nothing more.

Whether or not you like the doctor, he was right--the only way to live was to take the damned meds. And if he wanted to kill himself--as he could see he was doing--I think the doctor was within his rights in not wanting any part of it. Was that the only way the doctor could have handled it? Nope. Was it valid? Yup. It's called Tough Love.

And yes, as you can probably tell, I'm a bit of a hard-ass. There are only 2 choices in life--Do or Don't Do. Every decision can be broken down into that, as computer programming has shown us. I don't let people (especially students) think that they can wallow in a gray area and succeed.

Edited August 2, 2013 by TattPig

[pisstopper]

As a gay physician and a barebacker I can't resist adding my two cents here. Although HIV related care is not a significant part of my practice, I have absolutely kicked patients out of my practice for refusing recommended treatment and will continue to do so. While the idea of the selfless, endlessly compassionate MD is alluring it's a seriously outdated notion in the reality of today's medical care system in the US. It's about as outdated as the idea of patients who trustingly follow everything their docs recommend without question. It just doesn't exist any longer and hasn't for a long time.

While big pharma is certainly an issue there are many, many others. Insurance is one. Unless your endlessly wealthy, someone is paying for your care and in the end that's really all of us through higher premiums and public funded care. Insurance isn't very interested in paying for recommended care that the patient is refusing and endless appointments to have the same conversation costs everyone. Another issue is the reality of getting sued. No good deed goes unpunished, and let me tell you I know more than a couple of docs in my time who were compassionate towards patients that had no interest in taking the treatment that was recommended to them only to later go after the doc when the patient discovered that the negative consequences of their informed decisions were a little bit more unpleasant in reality than they imagined. (e.g. sure you warned me I could die, but you never said anything about the possibility of going blind from the same action so even tho i made the choice to go off meds now is the time for a lawsuit)

The doctor-patient relationship is exactly that - a relationship. There are two sides to it and in the modern world its something that we all have to live with.