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Taking Control

Summer 2003

I was diagnosed HIV-positive on October 14, 1999, with T-cells around 170 and a viral load around 70,000. About ten weeks later, my Dad was diagnosed with pancreatic cancer. Although he never knew it, he and I began our experiences with meds at about the same time. Since he never knew I was HIV-positive, he never knew the lessons he taught me about facing illness.

After my initial diagnosis, I was pretty much on autopilot. I just did as I was told. The clinic guy told me to see my doctor; my doctor told me to see a specialist; and within about a month, the specialist was telling me to take these pills -- a four-pill protease inhibitor cocktail. I never could remember the names of the drugs, but one had to be refrigerated. Anyway, I took the pills; I threw up. A lot. Six weeks later, the specialist switched me to different pills -- Sustiva, Zerit and Epivir. I didn't throw up anymore, but I had outrageous nightmares. Everyone said I had to be on the meds, and I had to take them everyday or I would become resistant to drugs and that would be very, very bad. So I took the pills.

During the thirteen months that my Dad fought his battle, I had little energy to focus on my HIV. My viral load became undetectable within six months, and my T-cells climbed to above 800 after a year. I left well enough alone.

That being said, watching my Dad deal with his terminal illness deeply influenced my feelings and attitudes about being positive -- and about treatment. Most importantly, I saw that the chemotherapy weakened my Dad so much that he had little quality of life. It also weakened him so much that, by the end, he was too sick for additional chemotherapy. Equally important to my Dad was the feeling that he was no longer in control of his life, even the end of it.

After my Dad passed, I had time to pay attention to what was happening to my body. My cholesterol had gone from about 180 to over 300. My body fat had started to migrate from everywhere to my gut. My bowels had a mind of their own. So I started to research the drugs I was on. Some great research resources I can recommend are the web sites maintained by The Body, Project Inform and the New Mexico AIDS InfoNet. Body Positive's telephone hotline was a lifesaver.

I found out that Sustiva could be raising my cholesterol and Zerit could be moving my fat around. Then I started to become afraid. What price was I paying to keep my virus in check? What was I doing to my heart, my arteries, my liver, my kidneys?

I was hearing a lot about structured treatment interruptions, and I decided it was something I wanted to explore, just for a while. To give my body a break. All I really hoped for was a couple of months, and maybe a piece of cheesecake without suffering cholesterol guilt, a bigger paunch the next day and a weekend of quality time with my commode. Because, after all, everyone said I had to be on meds.

I'll never forget how brief the conversation with my specialist was. I said I was thinking about going off meds. He said "Okay." And that was that. No discussion of the risks, no explanation as to why he hadn't suggested it before. Just, "Okay". I figured one of us had to be an idiot.

I knew I needed to have a more informed discussion with someone. So I called around to a few friends and a few hotlines, checked a few web sites. I wanted to know about the risk of becoming drug resistant and if there were other risks I didn't know about. After talking to a bunch of people and reading a lot of articles, none of which had any definite answers, I believed that nothing terrible would happen if I stopped taking my meds. It was kind of a research-based leap of faith. So I stopped my meds. I didn't stop panicking until a few months went by, but eventually I did unclench.

Twenty-one months later, I'm still off meds and my specialist says I will be for a while yet. My viral load is around 80,000 and rising, but my T-cells are steady at around 300. The specialist is basing his prognosis in part on the ratio between my T-cells and my viral load. Since my T-cells are 300 and my viral load 80,000, the ratio of T-cells to viral load is about .00375. My understanding is that as that ratio gets close to .001 (in other words, as my viral load increases and my T-cells decrease), the likelihood that I'll have to re-start meds becomes greater. Which, when you think about it, is just common sense.

Being off meds has made me feel more in control of my illness. I have found other ways to improve my immune system, including a vegetarian diet, yoga, meditation, and nutritional supplements. I have also become much more educated about the disease and the meds being used to fight it. The web resources I found help keep me up-to-date.

There are some compromises I've had to make -- I've developed a skin condition called psoriasis, and I frequently experience fatigue. But it's worth it to me. I think I'm preserving my body's ability to fight the virus in the future.

I know that I'll be back on meds one day. Some people have said that I should go back on if my T-cells stay below 300 for two months, or stay below 250 for two months. No one has really come up with an upper limit for my viral load. In fact, no one has come up with any hard and fast rules at all.

Me, I'm not buying into any pre-set numbers. I think my body will tell me when it's time. The fatigue will become unmanageable, or the psoriasis will advance, or I just won't feel right. These days, I trust myself to know, at least better than someone who does not have the disease.

But it won't be like before. I'll be an educated consumer. Before a drug goes into my body, I'll know its toxicity profile and its side effects. I already know there are some meds I want to avoid, based on their toxicity profile. And I already know of some new drugs that I believe will be more tolerable both in the short run and the long run.

And I know that I won't be relying solely on the meds to fight the disease -- I'll have all the resources I've developed over the past twenty-one months to support me. Including the knowledge that my treatment is my choice.

Eric Goldman is an entertainment attorney practicing in New York City and living in Nutley, New Jersey. He is also a member of the Transitional Steering Committee for the AIDS Treatment Activists Coalition (ATAC).

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This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.
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