POZ Community Forums
Main Forums => Living With HIV => Topic started by: allanq on July 15, 2006, 01:02:41 pm
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I have a friend who has been positive for 18 years. He's an intelligent and successful person, but if you asked him what meds he's taking, he couldn't tell you. He said he just does what his doctor tells him.
About six years ago, I told him that the lipodystrophy that he was starting to experience could be caused, or at least exacerbated, by the d4T (Zerit) he had been taking for so long. He told me that he was afraid to make any changes to a regimen that seemed to be controlling the virus (even though his arms and legs were getting very thin and his neck and buffalo hump were growing). He told me that his doctor, an HIV specialist, hadn't brought up the possibility of changing his meds.
A year or so ago, his buffalo hump got so bad that he required surgery to correct it. The surgery was successful in removing most of the hump. (He still has an oversized neck.) His doctor finally took him off the d4T and substituted Sustiva, which he has been doing well on.
Clearly, his doctor must have noticed that his hump was getting bigger, his neck was getting too big for his shirts, and his arms and legs were turning into toothpicks. I can't for the life of me understand why the doctor kept him on d4T so long, despite all the research indicating its association with lipodystrophy.
I also can't understand why my friend put all his faith in his doctor and refused to even talk to him about getting on a less toxic regimen.
Dealing with HIV is painful, and there is a temptation to just turn over one's health care decisions to a doctor. The reason I'm telling this story is to tell people how important it is to do your own research and question your doctor.
If a new drug has been approved, ask your doctor about its implications for your treatment. This happened to me recently when I heard of an opportunity to get into an expanded access program for TMC114 (now called Previzta). I had been on Tipranavir (Aptivus), but I knew that Previzta required just half the dose of Norvir that Tipranavir did. After some discussion, my doctor agreed that it would be a good idea to switch to Previzta. I have noticed that halving the dose of Norvir has definitely reduced the diarrhea that I had been experiencing. My decision to switch to Prezista was reinforced when reports came out about Tipranavir causing inter-cranial bleeding. If I had not brought up this change, my doctor would have just kept me on Tipranavir.
So the message I'm offering is this: take an active role in your own health care. Don't accept side effects as being inevitable. Sometimes a simple change in your meds can help solve the problem. If your doctor doesn't take well to being questioned, get a new doctor. If you're not comfortable with a decision your doctor has made, get a second opinion. It's your life, and don't turn over responsibility for it to another person, even if they are a doctor.
Allan
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So the message I'm offering is this: take an active role in your own health care. Don't accept side effects as being inevitable. Sometimes a simple change in your meds can help solve the problem. If your doctor doesn't take well to being questioned, get a new doctor. If you're not comfortable with a decision your doctor has made, get a second opinion.
Great reminder Allan! I 'm hapy for you about the Previzta! I would toss in this reminder: Nowhere is it written in stone that a person MUST have ONE doctor and only ONE doctor. For example I have an infectious disease doctor for HIV (he's my allopathic doctor) and a holistic doctor for any side effects HAART might give me. For me, this is a recipe for success!!! Allopathic. Holistic. !! :D
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Dear Allan,
Since I left Los Angeles in July 2000, I spent 4 years in a small community in Northern California with no real medical care for HIV. There was an FNP who was actually quite good but he served 3 clinics in 2 counties and an MD signed off on the medical charts without ever seeing most patients (in 3 years). Because of this lack of care, I have learned it is up to me to be informed of medications and treatment.
For the last year and a half, I have the best doctor in the State of California. I still question everything because proper care is my responsibility. Have the best day
Michael
www.Commission-on-AIDS.org (http://www.Commission-on-AIDS.org)
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A lesson I learned the hard way...Thanks Allan for reminding us of a very important factor in our survival.
David always had a saying about doctors...they're practicioners of medicine....they're still practicing and on us.
Big Hug Buddy :P
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David always had a saying about doctors...they're practicioners of medicine....they're still practicing and on us.
LOL! :D :D TRUE! (and sad/twisted)
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Thanks allopathicholistic for bringing me to this post, It is an important one. If anyone is unhappy with their DR FIRE their ass. That's what makes this site so awesome! KNOWLEGDE=POWER...We all need to be our own best heathcare provider.
I think we all forget that Dr's are human, and there are good ones and bad ones.Thank you Allan for this very important reminder. No one should ever settle for less then the best. sometimes that takes persistence, but it's well worth it in the long run. I'm sorry it took so long for your friend to realize this. What the hell was his DR thinking.?? Now that's one bad DR. Nice post Allan, thanks.
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I completely agree. That's why I'm on here is to keep up to speed on what is going on with HIV treatment. Whenever my doctor prescribes anything new I check it out on AIDSmeds or other sites before I take it. I've call my doctor back, pointed out drug interactions or other problems and he works with me. I actually went to him and told him I wanted to switch my meds to try to reduce my triglycerides. I told him what meds I wanted to be on and printed out articles in case he had questions.
My partner, on the other hand, couldn't be bothered. He takes whatever his doctor recommends without question. I know in his case he takes his meds regularly but he doesn't want to think about it.
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I like my doctor, he has used AIDSmeds.com since it started. I have also been here for 22 years because I was not like Allan's friend. He tells one very important story above, and each one of you who is new to this disease can learn a bundle from this story.
In Love.
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I have been luckier than most as I never had an oi, or anything else worse than foot warts and swollen glands. I have been trying to tweak my diet to keep it that way. My lowest count for t cells since on meds was 446-, last Jan when I had a sinus infection. The next results went to 831- my highest in April. Since getting on meds in may 2003 I have been undetectable.
My question is this, for those who have other related problems, cold sore , shingles etc., what if anything do you take diet or supplemental-wise? I also have finally begun dialogues with nutritionists, and doing my own research.
I wonder since starting bee pollen which is said to prevent many of the problems people post here, I wonder how true it is. I have to say since adding the bee pollen to a better diet, I feel like I did way before I got the bug! Not say the other things I take aren't helping. I been taking omega 3 capsules and find my skin looks better. As well as yogurt with no corn syrup ( avoid corn syrup at all costs), and wheat germ.
Cheers
John- health goes beyond the medicine cabinet!
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i read the proactive link and I was very please. one must take an active part in their health and not just let the doctor led them by the nose. That is what i do. i ask questions, i research medication, i want the doctor to know this is a partnership and i am the one who is in charge. he is of course a highly trained advisor which his opinions are very valuable to me.
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Good point made, Allan, and a valuable lesson to many. I have a friend who is much like the one you speak of, who has been on drugs for almost as many years as I have, yet has no idea of the names of them or what they are for. He just blindly accepts whatever his doctor says....right or wrong.
In this day and age, you have to be proactive, ESPECIALLY if you go into the hospital. They can kill you if you're not careful, and keep a close eye on what they are doing to you. It almost happened to me in 1999.
Alan
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Hey Allan,
Thank you for bringing this point up for discussion. It is our responsibility to take action with our own health. There are a number of choices that are available to us in this life.
Make the BEST of each Day!
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Good point made. When my triglycerides shot up on Kaletra my doc wanted to give me another pill to lower them. Upon researching, I discovered that Reyetaz may allow me to not have to take another pill. Low and behold my doc agreed to the switch and a year later my tri's are completely normal. Power to the people!
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Good thread! I have already posted that I, too, have gone from doctor to doctor when needed, because I would have to do this, take that or whatever it was. I will add to this discussion, however, that this can become a problem with a friend or even partner. WE may 'understand' that you 'have' to be agressive, ask questions, become involved, become a partner, etc., etc. But I have had more than one friend who chose to simply show up as required, nod his head and leave. No clue. No questioning. No urge to research things. And to stay a friend, we need, I think, to allow someone to handle things as he or she does until such a time that he or she 'gets' what we knew the whole time. It can be a test of a friendship or even a condition of how the friendship stays a friendship. Win