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Re: Medication Honesty
Mar 15, 2006

Ive been visiting The Body for years and have never been moved to post anything, but I have to put my 2 cents in on this issue. I do understand just where the author of this original post is coming from. Ive been HIV+ since 1985, lost my lover of 15 years in 1990 and man was I devastated, scared, angry, and full of misguided ideas about Western medicine. I was terrified by the stories I heard about side effects and I fought my doctor all the way and refused to take any meds. I believed in the conspiracy theories and had very strong beliefs that I was going to beat HIV without any help from doctors and especially pharmaceutical companies. I did everything available in terms of alternative therapies, nutrition, exercise, body-mind connection, etc., but my lab work continued to reflect that HIV was gaining on me rapidly.

I know I was an incredibly challenging patient but my doctor was always kind and supportive even when Id show up with the most outlandish ideas about managing my health. He never pushed me to take meds though he constantly encouraged me to take a realistic look at my declining health. Finally, in 1996 after long periods of feeling terrible, with a CD4 count of less than 50 and an ever increasing viral load, and some much needed encouragement from my very frustrated doc, I decided to give meds a try. I started and stopped a few different combinations but was never able to hang in and make it through the initial side effects. My fears were so great that as soon as Id feel anything foreign Id give up and refuse to continue with the meds.

Then in 1997, with a CD4 count of 12 and a Viral Load of >500,000, following weeks of head and neck aches and fever, I had a grand mal seizure. Talk about an EYE OPENER! Theres nothing like a bit of HIV related encephalitis to turn your thinking around. For the next two years I still struggled with taking meds, still feared the side effects but I knew the alternative was not so hot either. I was very sensitive to side effects and found it very difficult to find meds that agreed with me. I would take them, my labs would improve but Id always find some issue that would cause me to stop the meds. In August of 1999, after a prolonged period without any meds, a CD4 count of 6 and a Viral Load >750,000, I had a second grand mal seizure. I just did not know what I was going to do. I knew that if I did not take meds I would continue to have neurological problems, and most likely die within a year or two but life with meds did not seem very fulfilling either. So once again, I began a new combination of meds that included an experimental protease inhibitor and the rest is history, as they say.

Today I am incredibly healthy, active, enthusiastic and pleased with life. I have been on that same combination of meds for over six years and have had an undetectable Viral Load the entire time and have seen CD4 counts ranging from 275 to 400! The only side effect I experience is some diarrhea which is completely managed with Imodium. I have been with my current partner for 15years and truly feel Ive lived a second life. I cannot tell you how grateful I am to the docs who supported me through this process and yes, to those scientists and researchers to whom I owe my life!

Response from Dr. Young

Thanks for sharing your very personal story-- it's one that spans the many era's of the epidemic-- from the desperate early days to the initial side-effect prone HAART period.

Like many of my patients, I'm very happy to hear that you've been able to find a modern regimen that is well tolerated and can be taken successfully for many years. I'm heartened to learn about the supportive healthcare professionals that have been there for you.

Good luck, best health to you. BY

Not on meds
answers about my mom

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