As shower scenes go, it was right up there with Psycho. And, like poor Janet Leigh, I never saw it coming. My doctor recently told me what might seem like great news—that my CD4-cell count had hit 570, (nearly 400 points above my record low of 180, at the time of my 2000 diagnosis). But it was way too soon to celebrate. A few mornings ago, I slid back the shower curtain, turned on the water, and my skin ignited with a searing, blinding itch—one I hadn’t experienced since starting meds.
The itch, and all the other maddening allergies that come with it, aren’t side effects. They erupt whenever my virus is well “under control”—and they erupted daily for most of my life before I was diagnosed. You see, HIV and I dance a psychotic tango. Because my immune system is, in medical parlance, “overactive” when healthy, it treats the most benign agent as a lethal invader. Cut grass. Pollen. House dust. I’m left wheezing, gasping, swollen and scratching myself raw. The itch once left me so desperately ill that I became almost suicidally depressed. A kindly dermatologist hospitalized me for three days of antihistamines, oatmeal baths and steroid creams.
I have to balance that misery with the far more lethal threat a weakened immune system poses. So far, I have been fortunate—the meds have “worked,” and I have had few HIV-related symptoms of any severity. As I reach for the hairbrush scratcher I keep by my bed, I have begun to wonder whether HIV—at a terrible cost—has actually improved my quality of life.
Just before I learned I had HIV, I remember being thrilled that I could walk through a garden and soak up the scent of roses and tulips without gasping for air. That was eight years ago, and since I was 46 at the time, I just thought I’d outgrown the allergies. I had no idea my immune system was in free-fall.
One of the mysteries in restoring it, my doctor tells me, is that everyone is unique. When I told him the itch had returned with my higher CD4s, he said, “We don’t know what count is ‘normal’ for you, since we don’t have a reading of your CD4s before you were infected.”
I responded, “I have a good idea of what’s normal for me, and I’m pretty certain we’ve reached it.” And normal, I added, just isn’t much fun. “Instead of thinking of HIV as an antagonist,” I said, “why don’t we think of it as a tool that, with the drugs, I can use to regulate my immune system?”
He was actually listening. “Go on,” he said.
“Frankly,” I continued, “I was much happier and infinitely more comfortable when my CD4s were in the 400 range. How about we discontinue my meds until I fall below 400, then resume? That way I can reduce the side effects of the drugs and keep myself in a comfortable range of immunity.”
“If you get blood tests every month, to track where you are, I have no problem with that,” he said. “And you’ll have to pick a fixed count where we’ll agree you restart.”
Our magic number: 350.
I’ve buried enough friends to know that this is serious business; I’m not undertaking it lightly. However, there seems little point in taking toxic drugs to improve my immune function just so I can turn around and use steroid lotions and antihistamines to cut some of that function. After all that this virus has cost me, it owes me something.
Perhaps, balancing on the tightrope between toxic meds and a viral killer, I will finally be able to find that perfect point. Or, at least, a point where I can breathe in peace—and check myself out of the Bates Motel.