January 19, 2010
If you've read the title of this blog, you might wonder why I picked a term like "outlier" to describe myself. If you've read one of my prior posts ("Lipo: A Trophy?"), you know that I'm an unusual guy in that I suffer from lipoatrophy despite never having been on antiretrovirals. Obviously, my having lipo kind of upends the conventional medical wisdom that lipoatrophy is a side-effect of antiretroviral therapy. So that part of my HIV experience clearly places me outside of the norm.
In this post, I wanted to talk a little bit about another unusual aspect of my personal HIV experience -- my apparent ability to control the virus naturally. Last time I mentioned how my doctor couldn't believe that someone with such good numbers could have lipo. This time, I'll focus on the numbers themselves and what they might mean for me and for HIV research.
When first diagnosed in 2004, my viral load (VL) was 5,282, and that's the highest it's ever been. In my quarterly labs since then, it's bounced around a bit. The second draw showed a VL of 1,059, the next 291, after which it hit 412 and then 563. In late 2005, it became undetectable for the first time. It blipped back up to 349 in February 2006, then headed back to undetectable, where it remained until February 2007, when it rose to 515. Later that year it was undetectable again. My recent tests have all shown a detectable viral load, but for the most part it's stayed under 2,000 copies. In fact, I was a little disappointed with my most recent labs, since I had an infection when they were drawn and my VL went to 2,650, the first time it's been over 2,000 in a good while.
For a long time, I was just thankful that my body had this weird ability to keep HIV at manageable levels. I didn't stop to think about how unusual this was or whether there were other people who had the same ability. Somehow it just didn't occur to me. Then one day while I was surfing the forums over at aidsmeds.com, I read a post by a woman who called herself "Zephyr." She was writing about her own ability to completely suppress the virus, and she introduced me to a term I'd never heard before -- "HIV controller." She said that she'd been positive since the early 90s, and she'd never registered a viral load. I was stunned. I'd had no idea that there were people who could completely suppress the virus on their own. Zephyr also informed me that there were categories of HIV controllers. There were those like her, who can keep the virus at undetectable levels. They're called "elite controllers." Then there were the folks like me, who have low but detectable VLs. We're called "viremic controllers." This was the first inkling I had that I might be part of some identifiable group.
Those of you who are faithful readers of the blogs here on TheBody.com will recognize Zephyr as our very own Loreen Willenberg. Loreen introduced me not only to the term HIV controller but also to the whole field of HIV controller research. I'd already been to referred to Dr. Jay Levy at UCSF, but I really hadn't bothered to investigate what his research was all about. Prompted by Loreen's posts, I started to become a more active participant in controller research. I've twice contributed blood to Dr. Bruce Walker's international HIV controller study. Just last month, I flew to Bethesda, Maryland to be screened for the long-term nonprogressor (LTNP) study at the National Institutes of Health (NIH).
I can't claim that I understand the science behind all of this stuff. I can barely keep up with what I need to know to do my own job as a lawyer, much less follow cutting-edge medical research. All I know, and all I feel I need to know, is that the research I'm part of may one day result in some kind of treatment or vaccine for HIV. That's what Dr. Levy's looking for. To quote the good doctor himself, his study is "examining the host immunologic response to HIV, such as the evaluation of antibodies produced against the virus and cellular anti-HIV immune activities. The ability of CD8+ lymphocytes to suppress HIV replication through production of a novel antiviral factor, CAF, is particularly emphasized in our laboratory."
He hopes that this "factor" can one day be used as a therapy for all HIV-infected people. For my part, I hope Jay Levy succeeds. That's why once a month on my lunch hour I take the train (San Francisco Muni's N Judah line) out to UCSF's Parnassus campus to meet Dr. Levy in his lab. He draws about a dozen vials of my blood, we have a nice chat, and then I'm on my way. He tells me I'm a "good producer," i.e., that my body produces a lot of the factor he's looking for. I'm happy to donate, and I'm glad if my small contribution helps him reach his ultimate goal. I wish Dr. Levy well in his search. And I wish the same for all of other the doctors who have dedicated themselves to this research -- Bruce Walker, Steve Migueles, Steve Deeks, to name just a few.
Beyond the research, for me personally, being a viremic controller (or "VC" as we call ourselves) has meant that so far I haven't needed medication. That may change. While my VL has remained low, my CD4 count is drifting ever so gradually down. I'm also suffering from some mild symptoms that may be related to HIV -- fatigue, cognitive impairment, loss of libido, etc. Would these get better if I started treatment? No one knows. Those of you on treatment all know that the meds bring their own problems. For now, I'm staying away from the pills, but if things continue on their present course, I may have to take the plunge. If so, I'll let you know. I'm sure you'll all have some good advice for me.
I hope you won't mind if I end on a lighter, and somewhat Andy-Rooney-esque, note. I guess I shouldn't complain since I've got this natural ability to control HIV, even if I can't control it completely. I do have one little gripe, though. I have a bone to pick with whoever came up with the names of these HIV controller categories. Don't get me wrong. I think "elite controller" is fine. I mean, who wouldn't want to be called "elite"? It sounds kind of like John Calvin's "elect" -- the people who were predestined for heaven. Or like the members of those frequent flyer plans who get to board the plane before you do. But really, "viremic controller"? Who wants to be described that way? It sounds kinda gross, if you ask me. It's the adjectival form of "viremia." And, as one web site helpfully informs us, "Viremia, bacteremia and parasitemia are all forms of sepsis (bloodstream infection)." A form of sepsis. Great. What does that make me? Septic? Like one of those smelly tanks?
Oh well, I suppose there are worse things in life than being stuck with one bad adjective. And really, what can I possibly do about it? It's out of my hands, isn't it? But boy, I'd change it if I could. Guess that just shows that I'm a control queen in more ways than one.
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Outlier: My Unusual Journey With HIV
My name's John. I'm 49 years old. I'm a lawyer by profession. I now live in beautiful San Francisco, California, after spending a long time on the east coast. I was diagnosed in 2004, so I've been positive for something like five years.
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