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A Hundred Indecisions: A Tale of Starting Meds

By fogcityjohn

March 17, 2010

"Dis moi
Dans ces vents contraires comment s'y prendre?
Plus rien n'a de sens, plus rien ne va."

Mylène Farmer, Désenchantée

I tend to be somewhat indecisive by nature. When making any kind of important decision, I try my best to gather all of the relevant facts so that the final decision I make will be a well-informed one. I seek to exhaust all avenues of inquiry that may bear on the decision before I make it. As you can imagine, this often leads to a long, drawn-out process in which I will go back and forth several times before making up my mind and settling on what I should do.

My professional training probably hasn't helped in this regard. As a lawyer, I can usually see -- and argue -- all sides of an issue. In my work life, this isn't a bad thing. In fact, it's a necessary skill. I have to be able to see not only the strengths of my own case but also the strengths of my opponent's. To fully understand and present my side, I must be able to place myself in the adverse party's position and argue his.

Given my personality and professional background, it probably won't surprise you that I had a very tough time deciding whether or not I should start antiretroviral medication. My decision was made even more difficult because no one seems to agree on exactly when a person in my situation should start meds. I've written previously about my body's ability to maintain a low viral load in the absence of medication (Control Queen). I also noted that despite this ability, my CD4 count was gradually drifting downward. Recently, I reached the point where two successive counts were below 500. On top of that, in January I traveled to Bethesda, Maryland to donate blood plasma for the NIH [U.S. National Institute of Health]'s LTNP [Long-Term Nonprogressor] study, and NIH's testing put my CD4 count below 400 for the first time. My viral load, though, remained stubbornly low at 1,816. And putting all the test results aside, lately I just haven't been feeling so hot.

What to do? I know that the current guidelines call for beginning antiretroviral medication when one's CD4 count drops below 350. On the other hand, many HIV researchers are now arguing that treatment should be initiated earlier, usually once a patient's CD4 count drops below 500. Being the kind of person I am, I sought the opinions of experts. Surely, I thought, they will be able to provide me with the kind of advice I need to make the "right" decision.

So I did some research and looked to see what the finest minds in this field were saying. Instead of a consensus of opinion pointing me in a certain direction, I discovered something of a disagreement about how best to proceed. On one end of the spectrum were luminaries such as UCSF's Dr. Steven Deeks. Dr. Deeks thinks "essentially -- everyone with HIV needs to be on meds unless there's a reason not to be."

Somewhere in the middle is another eminent researcher, Dr. Peter Hunt. Back in October 2009, at the HIV Controller Symposium sponsored by the Zephyr Foundation and Shanti, Dr. Hunt gave a very informative presentation on the adverse effects HIV appears to have even on people who maintain good viral suppression. So I asked Dr. Hunt directly whether he would recommend treatment for someone with my then-current numbers (CD4 a bit above 500 and viral load below 2,000). He hedged, calling it an individual decision.

While at NIH in January, I asked Dr. Stephen Migueles, another prominent researcher, whether he would advise starting meds. He, too, gave guarded counsel. He told me that my CD4 count should "concern" me, but did not say that I should begin treatment.

Finally, I turned to a researcher with whom I have had a long relationship and who is truly a legend in the field of HIV -- Dr. Jay Levy. During one of my regular visits to his laboratory to donate blood, I asked Dr. Levy for his view. He was emphatic. He was unconvinced by the studies that seemed to show some benefit to beginning antiretroviral treatment once CD4 counts dropped below 500, as opposed to waiting until they were below 350. He went on to describe what he saw as the defects in those studies and to try to explain why they did not necessarily support the conclusion that starting at 500 was better than starting at 350. (To be honest, since I lack any medical background, I couldn't really understand his explanation.) He did allow, however, that my case was at least "arguable."

Thus, I found myself faced with somewhat conflicting advice. All of my efforts to gather facts and to make an "informed" decision had only led me to an unhappy place where I had plenty of information but no clear right answer. I asked myself, how is a layman like me to make a decision on something about which the most knowledgeable doctors disagree?

In the end, I based my decision not on all of my research, not on the opinions of experts, and not on any guidelines. As your mother always told you, it's better to be safe than sorry, and I chose to apply that bit of folk wisdom to my situation. Since the medications now available are a lot better tolerated than earlier ones, it seemed preferable to begin treatment and prevent any further decline in my immune system. Therefore, on my last visit to my doctor, I got prescriptions for Truvada and Isentress. I went straight to the pharmacy and filled them. The following Friday evening, I swallowed my first antiretroviral medications.

And you know what? It's only been two weeks at this writing, and I already feel better. No, I don't think the medications are already having a physical effect. Instead, I think the best explanation for my improved sense of well being comes from the medieval Jewish philosopher Maimonides (1137-1204) who said, "The risk of a wrong decision is preferable to the terror of indecision." I realize that a large part of what was bothering me was simply the anguish of worrying about whether I was doing the right thing. Just putting the decision behind me has been a tremendous relief. I guess the lesson is that sometimes just making a decision is the right decision.

Send fogcityjohn an e-mail.

Read more of Outlier: My Unusual Journey With HIV, fogcityjohn's blog, at TheBody.com.




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