My Doc Won't Even Discuss It

[hawthorne]

Hey guys, first off I wanna say how cool it is to have a board to bring these issues to and reach out to other guys in similar situations.

I'm a gay guy, 30, 6'2", 210, worked out, and ready to put on some serious size and density. However, I am also hiv+ and on meds. Before I start any regimen or routine, I need to be sure of what to expect.

Unfortunately my doctor, though great with the HIV, won't even discuss testosterone or any other 'male enhancement' therapy (as she calls it.) I think as a woman, she doesn't really understand that part of the male physiololgy. As a result, I'm on my own in making this decision.

I have spoke to a lot of long term survivors of this disease, and the one thing they all have in common is lean body mass, and a hardcore gym routine. Most of the long termers are committed to taking amazing care of their bodies.

I am at the beginning of this. Only infected for three months or so, but my VL is already undetectable. If there are any bodybuilders out there who might be able to offer up some solid advice, or warn me of some pitfulls, I'd be very grateful.

You can post here, or even write me directly at [email protected]

I also work as a DJ so if anybody out there is looking to book a dj, lord knows I could use the business right now. My site is at www.ghettodisco if you want to check it out. I'm not selling anything, just some info there about the music I play and the venues I work at.

Again, Thanks to anyone who can help out.

 

[enlightened]

..im not a bodybuilder, but I am HIV+ and if you dont agree with the opinions of your doctor, you need to switch doctors. The person that treats you will be with you for a while, so you need to find someone that suits your medical needs. If you havent yet started meds, or are in the first year of being HIV+ and you and your doctor already dont see eye-to-eye on certain medical aspecs you feel you may need, theres a problem.

Remember, youre the customer. Youre the one who is ill and youre the one that knows what results you want to receive from medication and diet regimen. Dont allow a difference of opinions to discourage your goals, and if youre going to stick with this doctor, be sure to express how much interest you have in male enhancement therapy.

 

[NorCalBdyBldr]

Hi David,
I sent you a private message that you should check regarding this issue. I came down to San Francisco with Brent and Kent after talking to Carl in New York about your situation and talked with you over dinner about your situation as you will recall. I also expressed my belief in the likelihood that your physician would have a problem with the "male hormone" issue in spite of the fact that she is at the University of California/San Francisco Medical Center which has excellent HIV treatment physicians and staff available. This should not be construed to take anything away from her as a clinical care giver or medical researcher as the two roles are often hard to balance between because of inherant conflicts. I suggested that you may wish to switch your physician or split between having one handle the direct HIV treatment issues and one that would be more amenable to dealing with any relevant hormonal/wasting/lean body mass issues as well as lipid issues, etc. From what I have seen, it all eventually comes with the territory and even if your testosterone levels are normal now, they probably won't remain so with this disease over the long haul. The fact that "recreational" and competitive bodybuilders noticeably did considerably better with this disease than those that did not use steroids got noticed by some members of the medical community, particularly on the West Coast, as early as the 1980's. It was obvious that even without treatment, that guys on steroids were living three to five years longer than those that were not doing them, even back then. There are some things that specific anabolic agents do that actually seem to potentiate the immune system against HIV in some very interesting ways and also counteract some of the nastier side effects (like bone marrow suppression) caused by certain HIV drugs as well. There also gets to be a general "hormonal resistance issue" with many people with HIV as well. This is less well known/understood about HIV disease and can also throw some of the "rules" as to what is "normal" for people with HIV out the window as "normal hormone" levels may not work for you without doing other things, including possibly higher than expected doses, etc. This all needs to be explored by someone knowledgeable, including the appropriate lab testing, to see if there is a problem and what the appropriate way to deal with it is. Also be aware that no physician is legally permitted to prescribe ANY anabolic agents soley for "muscle enhancement" purposes to ANYONE so your discussions need to be reframed in the context of wasting, metabolic issues, lean mass issues, etc. and backed up by appropriate testing. Make this a VERY firm mental note! You need to discuss this with them in these terms as NO ONE has any interest in getting crosswise with the State Medical Board or risk suspension of their DEA scheduled substance prescription license or worse.

That being said, it is FAR better to be proactive than reactive in this regard. You will find that as time progresses with HIV, lean mass lost becomes increasingly difficult to replace, let alone put on, if it isn't handled VERY well. And you will find that it is ALWAYS easier for lean mass to come right back off then it is to put it on in the first place with HIV due to the underlying metabolic complications involved. So there still is a VERY valid argument for putting a little extra "money" in the bank so to speak and there are some physicians that are amenable to this train of thought but few that would outright volunteer it to a patient considering the whole stigma and legality of the anobolic substances issue. There is a serious and significant wasting issue that starts working from the time of the initial infection and tends to worsen with time. This must be carefully monitored with this disease and the conditions under which it sets up will not become obvious for a couple of years if all your doctor does is weigh you on a scale. Most of the changes are rather subtle and happen over time so are easily missed if not being watched for specifically. If your doc is uncomfortable with the issue, she is obviously not knowledgeable in all of the intricacies involved either and therefore you should deal with a doc that is much better versed, and qualified, to address these issues. DO NOT believe for a minute, that you will CHANGE her because you like her as your primary HIV physician. People's biases are complex and somewhat built in. It is a complex enough issue that you need to find someone that is already on board with all of this AND knowledgeable. Even if she were to change her attitudes, she will not learn all of this over night either.

Anyway, the issues surrounding HIV treatment are sufficiently complex that in order to get CUTTING EDGE care (and you are SERIOUSLY mistaken if you don't get the absolute BEST care that money can buy with this disease) your choices of the really TOP professionals throughout the U.S. are small or you may have to put together your own "team" of specialists in order to deal with different aspects that each is more knowledgeable with. This approach will REQUIRE that you become quite knowledgeable as well. The truth is that being located in San Francisco affords you access to some of the best HIV practitioners and support teams in the world at a level that is available to few others in other parts of the U.S. It is well known that the first crack at certain trials are offered through ward 86 of San Francisco General Hospital long before ANYONE else gets a chance and there are some treatments offered there that are not offered anywhere else at all. The clinical trial that you yourself are involved in should tell you this. You should also be aware that the American Medical Association (AMA) came out with the results of a very recent and sobering study that found that fully 25% of so called HIV practitioners do not even meet the most MINIMAL AMA published standards of basic care for people with HIV disease. They also found that this was particularly true of nearly ALL HMO's and MOST practioners that saw, on average, less than 100 HIV + patients on a regular basis. And those are the ones not meeting the MOST BASIC published guidelines, let alone anything "cutting edge." So something to think about.

You also have to consider the difference between physicians that have the attitude that the meds are "good enough" versus the ones that believe that quality of life is at least as important as viral load, etc. There is a BIG difference in these two schools of thought! I chewed out one HIV physcian for telling a patient that he "was doing fine" as his viral load was non detect and he didn't see any need to change out his HIV regimine even after the patient had been complaining repeatedly that he couldn't even hold the meds down and was vomitting every day and couldn't work out and had trouble even eating. I told the physician "throwing up EVERY DAY is NOT DOING FINE!" Some do not see that quality of life matters because they are keeping you alive and that is good enough. All they see are CD4 counts, viral loads and maybe liver enzyme levels and as long as the rest of the CBC is close enough to normal that is ok. See the difference?

The truth is that it is better that you do the research and develop a "game plan" of what you feel you need and why you think it is justified and have the appropriate testing done to help support the arguments. It wouldn't hurt to bring in some relevant published studies or references either as your physcian may not have been aware of these. It is even more important to find a physician that is amenable to doing the testing and understands the issues. In addition to lab tests, physicians will be looking for sympoms of low testosterone for example such as fatigue, lethargy, depression, low to nonexistent labido, etc. to help evaluate the lab test results. Some HIV patients present with symptoms of low testosterone even though their levels may actually test inside of the "normal range." This could be due to a number of factors like "hormonal resistance"--the body's failure to completely "recognize its own hormones, etc. Remember, physicians have to have a clinical observation or laboratory basis to make a diagnosis and prescribe scheduled substances to help remedy a medical "need." They CAN, however, prescribe some things "off label" in certain cases so it doesn't have to be specifically approved for HIV wasting as in the case of Anadrol 50 and Oxandrin (Anavar) which have this specific "labeled use."

Anyway, hope that helps. You have LOTS of work to do!! I'll be happy to help you out if you have any questions or need any referrals or need to be pointed in the right direction for locating some of the research. Good luck!

 

[Tyger]

Hey, I sent you an e-mail about this, but then I thought this info could be useful for others as well...
I'm a Norwegian poz gay guy, and I heard about this type of treatment when I was in the US earlier this year. I recently did some 'research' on the web about anabolics/testosterone treatment and HIV, and I found a couple of good resources. - I must say you're lucky to live in the US - in this country I doubt I'll find one doctor that would even begin to listen if I should mention this.
The following links may be useful to you: http://www.medibolics.com http://medibolics.com/nelson/index.htm
Open the second link and scroll down to go to a list of US physicians that are positive to this type of treatment.

I see you are in one of my favourite US cities - great website! - - You are bound to find a physician there that can help you.

Good luck!