December 17, 2009
This post describes my personal odyssey with the condition known as lipoatrophy. I warn you that the post is long, and I apologize for that. But since my experience is rare, I thought it best to lay it all out in detail. I also think that my story holds a lesson for all medical professionals who deal with HIV, and I'll get to that at the end. I'd also be very interested in hearing from anyone out there who's had a similar experience. Having gotten those preliminary recitals out of the way, here goes:
In 2004, at one of my first appointments after being diagnosed with HIV, I remember telling my doctor that I wanted to make sure my parents didn't find out I was positive. I expressed my fear that taking antiretrovirals would cause me to develop lipodystrophy and give me the gaunt, wasted visage that a friend of mine calls "AIDS face." My doctor told me that my concern was overblown. It was true, he said, that some of the older medications caused lipo, particularly the ones he called the "D drugs." I didn't need to worry myself unduly, though, because he told me that physicians now know which medications tended to cause the condition, and there were now treatment options that would let me avoid those. So I breathed a little easier.
Then he gave me some more reassuring news. My viral load had dropped from its initial reading of 5,282 to 1,059, while my CD4 count had increased from 578 to 699. With my numbers, he said, treatment simply wasn't indicated anyway, so I didn't need to worry about drug side-effects for the time being. For a while, the numbers continued on a path of gradual improvement. By my third round of labs, my VL was down to 291, while my CD4 count was at 675, with a percentage of 41. My VL soon became undetectable, and my CD4 counts rose well above 700.
In mid-2005, though, at the same time I was hearing all this good news on the numbers front, people started asking me whether I had lost weight. I found the question odd, since I hadn't lost so much as a pound, and in fact, I had noticed that my pants were getting a little tight. At first I just brushed off the questions, but then I started to remark on some small changes in my face. For example, my nose looked wider. (I later realized this was because the cheeks on either side of it were receding due to fat loss.) My face also looked a bit more angular than it had before. Initially, I wasn't all that concerned, and I put it down to aging. As the months went on, though, the changes became more noticeable. My then-partner started commenting on them. Once, he went away for ten days, and when he returned, he told me he could tell that my face was thinner than when he'd left.
In November 2005, I saw my doctor for one of my quarterly check-ups. My numbers were really good. My CD4 count was 725, my VL undetectable, and my percentage 41. "That's great," I said, "but I think I'm developing lipodystrophy." My doctor cast a dismissive glance at me and said, "You don't look like a person with lipodystrophy." And that was that. On the next visit, the numbers were good again (CD4: 748, VL: 349; 45%), but the changes in my face had definitely gotten worse. I raised the issue again, and my doctor again dismissed it, telling me I'd lost three pounds, and that was probably the explanation. He told me to eat more. I talked to him about strange sensations in my feet, and he poked and prodded them, looking for evidence of neuropathy, but they were normal on that score.
I took his advice to eat more very seriously, and began eating with a vengeance. Within two weeks, I'd gained eight pounds by increasing my food intake and supplementing my diet with Ensure. But none of the new weight seemed to go to my face, although my pants certainly got tighter. As time went on, the problem worsened, yet my doctor refused to believe I had lipo. Despite the fact that the evidence was -- quite literally -- staring him in the face, he told me I was imagining it. People like me, he said, just "didn't get lipo." Because I had good numbers, in his view, I "couldn't" have lipodystrophy.
My numbers were so good, in fact, that I soon enrolled in a study run by Dr. Jay Levy at UCSF that was investigating people who exhibited the ability to suppress viral replication without meds. It was my introduction to research into people known as "HIV controllers," which is something I'll return to in subsequent posts.
I looked everywhere trying to find information on HIV+ people who developed lipodystrophy without being on meds. I found next to nothing. I went to see an endocrinologist to determine whether my condition could be caused by something else, since I understood that the condition could be associated with diabetes, but all those tests came back normal. On one of my visits to Dr. Levy, I discussed the problem with him, and he used his good offices to get me an appointment with a leading researcher in the field, Dr. Carl Grunfeld. I saw Grunfeld once, and he told me that he thought I had HIV-induced fat loss, but that he didn't think it was lipodystrophy. He allowed, however, that he could be wrong, and told me that he'd like to know if he was. He advised me to contact him again after a few months if the condition got worse.
Months later, the condition was worse, so I e-mailed Dr. Grunfeld to tell him so. He replied that he was overwhelmed with work and couldn't see me. On my next trip to UCSF for Levy's study, Dr. Levy told me that Grunfeld had called to tell him that he'd concluded that my condition wasn't serious enough to merit his attention. I was floored. I mean, the guy hadn't even seen me again, and yet he'd somehow come to a conclusion about my current condition. People correctly ridiculed former Senator Bill Frist when he claimed to be able to diagnose Terri Schiavo after only seeing a video of her, but in a way Grunfeld had gone Frist one better. He'd decided how serious my condition was without bothering to check if it in fact had gotten worse.
At times, I almost felt as if I was losing my mind. I could clearly see that I was suffering from peripheral lipoatrophy, yet no one in the medical profession would believe me, because my numbers were too good. Then I got my "break." The strange pains in my feet were getting worse, so my doctor referred me to a podiatrist. The podiatrist looked at my feet and told me, in his soft, east-Texas drawl, that I'd lost the fat pad on the bottom of my feet. The pain was the result of the fact that I was basically walking on the tendons and nerve endings on the soles of my feet. He said I'd need to be fitted with orthotics that would substitute for the vanished fat. He took casts, and I wear the inserts all the time now.
With that diagnosis, my HIV doctor went from treating my lipoatrophy as a figment of my imagination to seeing it as an actual physical condition. Nothing about my condition had changed, of course, but a person with an "MD" after his name had recognized what was going on, and the podiatrist's recognition transformed my supposed hallucinations into concrete reality.
And therein lies the lesson I mentioned at the beginning of this extended rant. Too often, doctors allow their views to be dictated by what they think they know. My particular condition didn't fit the usual paradigm, but rather than acknowledging the fact of it and then looking at my condition as unusual or unique, the doctors just decided that it couldn't exist. They "knew" that lipo was caused by meds. I hadn't taken meds. Ergo, I couldn't have lipo. So instead of seeing this as a possible opportunity to learn about how HIV itself plays a role in causing lipoatrophy, the doctors I saw mostly chose to blind themselves to it. In this, they were a bit like the Catholic Church's astronomers who refused to look through Galileo's telescope when he offered to prove to them that the earth actually revolved around the sun. The astronomers, schooled in Ptolemy's geocentric view of the universe, didn't want to look at the actual movements of the sun and the earth. They already "knew" the answer, and they refused to be dissuaded by inconvenient facts.
Now that he recognizes that I actually have lipoatrophy, my doctor has theorized that there is a relationship between my unusual ability to control viral replication and my loss of peripheral fat. I won't claim to understand the theory. All I know is that he thinks it has to do with something called "tumor necrosis factor." If he's right, it'd be richly ironic, wouldn't it? The prize my body gets for being able to suppress this virus is a case of lipo. So maybe lipo is what I get for winning the fight with HIV, at least so far. Imagine that. Lipo -- a trophy.
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