POZ Community Forums
Main Forums => Living With HIV => Topic started by: Ihavehope on February 22, 2007, 01:55:05 pm
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My new doctor is a sweatheart. He looks at me straight in the eye and tells it to me like it is.
He said HIV is chronic disease but that doesn't mean it is an easy disease to deal with. He also said it is possible to comapre it HIV ONLY in the sense that you need to constantly keep thinking of it on a daily basis due to the meds. And most importantly he reminded me that just like diabetes everyone experiences HIV differently.
I also asked him the dreaded question of
me: " Do i Have Aids?"
His answer: " Yes, you do, at 200 CD4 cells you are considered a person living with AIDS from now on but that is just for paperwork issues, and it helps us get more funding from the government as well"
Me: "How effective is Kaletra and Truvada? and will I get lipo/facial wasting from these drugs"
His answer:" Kaletra is actually the most recommended drug in the US for HIV at the moment regardless of the once a day pill regimen that came out recently because it is not very easy to become resistant to Kaletra. Sustiva is a whole class of drug that if you happen to miss doses and are not faithful to adherence you will be resistant to all the class very quickly. Lipo, is known to be cause by most drugs but more linked to Zerit and other older drugs, I don't prescribe them anymore unless you become resistant to all other drugs and there are not choices. Genetics plays an important role in lipo as well but it is also a matter of luck, I am not telling you you are going to get lipo or you will not get lipo the only thing I can tell you it is very rare to see people on Kaletra suffer from lipo but that is just based on what I have seen not on scientific facts."
Me: " Do drugs contribute to CD4 counts"
His answer: " Yes"
Me: " But I been told many times by people who are living with HIV that they do drugs and are doing well and there is no proof of this"
His answer: " He starts to laugh and says I've seen it with my own eyes in my 20 years of profession all the proof I need. Those who choose to do crystal meth or many heavy drugs while on HAART don't develop the amount of CD4 cells your body should. Those who do heavy drugs don't see a big increase in CD4 cells as much as someone who doesn't do drugs. If it doesnt' screw up your counts it will certainly screw up your face and skin, trust me I see 1-3 patients a day removing warts from people's faces and bodies because they don't want to leave drugs. Those who are doing well and are still getting high on heavy drugs would have better counts if they stopped. I've seen it happen, people who could never reach undetectable VL or no big increase in CD4 counts and resistance to numerous drugs once they stop have a tremendous improvement."
Me: "So those already infected, are we destined to die of AIDS"
His answer: "Let me clarify this to you, people are still dying of AIDS and will continue to die of it. It is a serious disease and you should treat it like a serious disease and the best way to do it is by coming here and keeping track of your VL and CD4 counts every 3 months or less. The medication available right now is effective to most people but not to all, resistance is still a big problem but if you you adhere to your drugs you will contributing to living a longer healthier life. Reaserch says that people recently infected HIV should expect to live a normal life expectancy minus 6 months or a year."
Me: " I don't buy it, but thanks for trying to cheer me up"
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Hey Al,
These are all excellent questions and sound responses. I'm glad you posted this because it will help me focus more on the questions I have as well next Wednesday.
I disagree that we are now living with AIDS from one lab test, but I do agree with his reasoning for it. That makes sense to me so now I want to ask my doctor if my own "AIDS" diagnosis helps to contribute to funding. Is that something reported in addition to the HIV+ status?
The interesting part was his take on meds. Something I will consider as well now.
I forget, but did they have you on Bactrim or any other drugs prior to the meds?
I would also agree that meth is a huge cause of all of these skin issues etc. regardless of HIV status.
Great questions and interesting answers. Thank you for sharing that.
Wesley
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Thanks for posting this Al. I think you're doc was being pretty straight forward with you. I'm glad you found a great new Doc!
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Al.....I agree that this sounds pretty straight forward. I am glad that you have found a doctor you like. I am happy for you. If you have confidence in your doctor and trust him/her to tell you the truth, I think it helps A LOT.
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Me: " I don't buy it, but thanks for trying to cheer me up.
I can't see how you can like this doctor any more than the other, if you think he is just trying to cheer you up?
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Hey I have hope,
Why don't you buy it if I may ask?
Zeb
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In terms of your question about recreational drug use, the key to the question should have been FREQUENCY. Doing something once every 3 months is VERY VERY different from partying every weekend (or more!) which is, I'm quite sure, what he was referring to.
I have no problem, nor do my t-cells, dabbling in something as infrequently as what I described, and that includes alcohol. I get drunk maybe twice/year and if I snort coke once a year these days that is a lot.
It's like a political poll, the results can be skewed easily by the language used.
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Ivahope,
I am so glad you found a doctor your like. The "not buying' it part is a normal feeling at this early stage of your diagnosis.
I agree with your doc regarding the drugs. The less you do of them the better off you or anyone will be. It strikes me as absurd how emotionally invested some people are in defending drug, use. I don't think anyone can honestly say that drug use has no consequences on the body. I know from experience how drinking "recreationally" lowers cd4 cells. This is not even getting plastered every week-end. HIV drugs are already fucking up your liver. Don't burdon it with more crap that it needs to metabolize. It's that simple. Add to to drinking, stress levels, drugs, environmental pollution, and you have a recipe for trouble ahead.
But hey if you are doing great with drug use and are truly feeling great, more power to you. However we cannot deny that drug use is tied to drug resistance, and complications in the treatment of HIV/AIDS.
rob
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Me: " I don't buy it, but thanks for trying to cheer me up"
Later on you'll find out that he wasn't attempting to patronize. Quite possible to live a long life. My doc keeps telling me I'll live to a reasonable old age. I thought about it one day and realized in another decade I'll be 66 years old. Good grief! It's going to happen.
Yes, I understand you are much younger than I. Keep in mind I started this HIV scenario way back in the early 80's. I was young as you are today. (ballpark--since I don't know your exact age and we're not going to split hairs here.)
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It strikes me as absurd how emotionally invested some people are in defending drug, use.
Rob, if you're going to reference me, address me directly. I'm not "defending" drug use, just pointing out a more realistic viewpoint.
I suppose I could say you're "emotionally invested" with slamming drug use. Such talk like that really serves no purpose but to flame bait, but it won't be the first or last time you chose such a tactic on a web board.
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Me: "How effective is Kaletra and Truvada? and will I get lipo/facial wasting from these drugs"
His answer:" Kaletra is actually the most recommended drug in the US for HIV at the moment regardless of the once a day pill regimen that came out recently because it is not very easy to become resistant to Kaletra.
Ihavehope.... That is a very similar response I received from Dr. Ben... That is reashuring and thank your for posting your questions... Its always nice to see similar perspectives from ID docs although thats not always the norm. I have an active intrest in the above since I am currently on that K stuff.... Thanks Again...
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I would be curious to see the first-tiered peer reviewed scientific data that concludes that recreational drug and/or alcohol use poses a threat to HIV progression. It seems rather judgmental to lump all drug use into a single category, with associated judgment.
However, this seems to be hijacking this thread, so I would be happy to see a new thread with this subject.
*edited for source material:
http://www.ingentaconnect.com/content/els/10472797/1996/00000006/00000004/art00022
The Lack of Association of Marijuana and Other Recreational Drugs with Progression to AIDS in the San Francisco Men's Health Study
Colfax G et al. Club drugs and HIV infection: a review. Clin Infect Dis 42: 1463-1469, 2006.
More in a new thread.
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The doctor was referring to heavy drug use and to be more specific "crystal meth".It depends what the meaning of the word "heavy" means to you. It can mean doing a large amount of recreational drugs in a short period of time or it can mean doing small amounts of drugs on a daily or weekly basis. But we all know anything in excess is harmful. I really don't care to talk much about this topic because I don't do recreational drugs, at least not anymore and plan not to just because there is a such thing as "addiction" and I do not want to be another Ana Nicole Smith or Courtney Love or even Britney Spears. HIV involves enough drama of its own, drugs have only caused me physical and emotional trauma. For those who want evidence of my doctor's statement I don't have it.
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Thanks for the clarification, and it's in line with what I posted earlier.
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I do not want to be another Ana Nicole Smith or Courtney Love or even Britney Spears.
But they all turned out so well! ;)
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Sorry, but I disagree with your Doc on two counts. First, I am someone that's lived with HIV/AIDS for 20 years and have never done any drugs. My T-Cells have for the past 12 years have been in the 200-300 range and have never "improved" beyond that regardless of never doing drugs. Just because you don't do drugs doesn't mean you'll see a big improvement in CD4 counts while on meds - it's on an individual basis. Second, While the 'older' drugs might account for some lipoatrophy problems, ALL or most AIDS Drugs now carry a warning that they might induce the condition. Therefore, the lipo problems are also on an individual basis and how the body reacts to the meds over time. But the doctor is right in that he can not guarantee that you won't develop lipo because there is no hard evidence proving that one drug indeed is more responsible than another - and if that was proven, there would be lawsuits demanding restitution for not warning earlier than what is being done now.
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We're all just guinea pigs and our doctors all make educated guesses. Really. You're so right it's individual. Every story someone comes up there will be one directly opposite, all we can go by is the average.
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Good questions all. I didn't know that about Sustiva. I was lead to believe there is a small window, that you don't have to take it at the exact same time every day. I will have to follow up on that with my doctor. And now I have to go take my meds ;D
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Sorry, but I disagree with your Doc on two counts. First, I am someone that's lived with HIV/AIDS for 20 years and have never done any drugs. My T-Cells have for the past 12 years have been in the 200-300 range and have never "improved" beyond that regardless of never doing drugs. Just because you don't do drugs doesn't mean you'll see a big improvement in CD4 counts while on meds - it's on an individual basis. Second, While the 'older' drugs might account for some lipoatrophy problems, ALL or most AIDS Drugs now carry a warning that they might induce the condition. Therefore, the lipo problems are also on an individual basis and how the body reacts to the meds over time. But the doctor is right in that he can not guarantee that you won't develop lipo because there is no hard evidence proving that one drug indeed is more responsible than another - and if that was proven, there would be lawsuits demanding restitution for not warning earlier than what is being done now.
Hey David
My doctor was not comparing people who do drugs and people who don't do drugs lab results but instead people who have been doing drugs compared to when they stop doing drugs. About the lipo he didn't say I was or wasnt' he just stated that lipo was more commonly seen with Zerit and other older drugs like AZT. He based his analysis of Kaletra on what he has seen with his own patients not scientific data. There is not enough evidence to prove that Kaletra or other drugs do not cause lipo. He actually said most drugs are known to cause lipo and genetics play are big role.
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Kaletra's only been out what -- six years? I guess we'd have started to see by now, maybe not. It took me exactly six years of being on the other HIV meds before I noticed any lipo. I really think they should not make premature comments like that, personally. Maybe in a couple more years can they say that.
I'd be interested in what other lipo-ees "lead time" was from when they started HIV meds until they noticed significant lipo.
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yeap,,, i am alreadying beginning to see some signs of lipo, and i have only been on hiv meds for a month.
there are tons of papers out there regarind how every usuage of x, meth or whatever, can damage your immune system and cause temporary massive drlop on your t cells.
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yeap,,, i am alreadying beginning to see some signs of lipo, and i have only been on hiv meds for a month.
there are tons of papers out there regarind how every usuage of x, meth or whatever, can damage your immune system and cause temporary massive drlop on your t cells.
Have you been diagnosed with Lipo? You mentioned in the Lipo forum that you had put the weight back on, and that your face was filling out.
Also, could you post links to the papers which specify which drugs cause a temporary massive drop in T Cells? I can wrap my head around meth doing this, but G and X? What what, exactly IS included in "whatever?"
You know me by now. I gotta know the science.
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I'm getting "Am I Infected" forum vibes from egello. Where's RapidRod?
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yeah, i think i am sort of going crazy,,,
well, my face was filling out, yet, they aren't full like they used to be,,,, there is still that shadow....
regarding the papers, i will try to find it, but i remember reading it in pubmed.com
they did study on people who do 1 dosage of X vs. 2 dosage and the amount of drop was HUGE!
however, as philly said, its one thing if you do it like once or twice a year, but doing it consistently is probalby really really bad...
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If you read this overview of lipo on The Body (http://www.thebody.com/lipo/overview.html#is) you will see them warn of confusing weight loss from wasting versus lipo. It's two different animals, but the end result can often be quite similar.