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Nov 24, 2002

i just read the article by dr nelson on treatment interuptions. i was undiagnosed for 8-10 yrs. then when i found out, in 94, i still avoided meds. i finally started them in 96. but i went off again in april 2000 and am still off. of course ur gonna lose cd's in the first 3 months off meds.. also ur VL goes up. so what? ur immune system will catch up. if not, then the patient will know they are not candidates for sti. my t's stablized and so did my VL. i'm doin fine.. i think sti are a very good tool for treatment. i know i'd be dead if i was still on meds. the side effects are horrendous for me. i think u doctors are really scaring patients way too much. u do that to scare them into adherence but in the long run, i think it's has negative results. i hope, when i ever go back on meds, to do the pulse treatment. how r u ever gonna get good research results when u scare most patients away from any form of sti's? over 2 1/2 yrs aprx i have gone from 900 t's to 340, and my VL from UND to 200,000. that's not all of that bad. but i can hear patients intake of breathes. that's b-cuz they have been terrorized into thinking that they will die if their VL goes that high. i'm no where near death. u docs have got to shape ur patients treatment to them. not ur case books. i bet my life that their are tons of people on meds that would do very well on some kind of sti. save their organs big time. why do u insist on terrorizing us?

Response from Dr. Boyle

I don't think anyone is out to terrorize you or anyone else. Clinicians treating HIV patients want them to do well, and that means helping them in every way they can, including the appropriate use of antiretrovirals. Admittedly, we don't have all the answers but, at the same time, we are actively trying to find out what works and what doesn't. The data to date indicate relatively strongly that for some people (generally those who have never had a T cell count below 200), interrupting therapy with careful monitoring is probably OK. On the other hand, however, for patients who have had T cells less than 200, at any time, interrupting therapy may entail some risk, including a risk of new or recurrent opportunistic infections. So, while I am happy that you have done relatively well, we have to base treatment decisions on more that the results of just one patient. I think most patients understand, expect and appreciate that and I hope that after thinking about it you do too.

Time to start again!

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