When I was a poz newbie back in the 90’s, I remember being much impressed by the launching of POZ magazine. A glossy news magazine for HIVers? It seemed very radical. That was in 1994 and of course it’s being going strong ever since.
One of the features of those early editions which fascinated me was its founder Sean Strub publishing his latest lab results in each issue*. The numbers which he was sharing were not good, I remember, and reflected the kind of downward spiral that many of us were experiencing at the time. Again, this sharing seemed a radical act. To this poz newbie, sharing this kind of data was something new to me; going downhill was hereto something of a private thing. But Sean used each of his lab results as a teachable moment. It seemed a clever thing to do, but brave and courageous too. I’ve admired the guy ever since. (He’s still very much alive and kicking, by the way. Poke around this site and you’ll find a number of video clips with him in them. He looks great.)
All of which brings me to my own recent lab results last week, which made a routine visit somewhat less than routine. Now I think I’ve already confessed in an earlier column that when it comes to tracking my own lab results, we are not talking meticulously prepared graphs. In fact, I used to keep NO records whatsoever. Now I have a tatty piece of paper I’ve scribbled on each quarter since 2007, recording my CD4 and viral load counts. No fancy percentages here, I‘m afraid.
This week I went to the clinic for my usual quarterly check-up with Dr No-Bedside-Manner (to the right, not exactly as illustrated; in fact not even close). Here’s what I wrote afterwards on my tatty little piece of paper: CD4 800. Viral load undetectable.
CD4 800? Now that’s a pretty big leap in the right direction. I was diagnosed way back in 1993 at 240, dipped in the ensuing years to the low 100’s (hello AIDS) and then bounced back to the 400 range after the advent of protease inhibitors. I stayed in that range for some time, kind of giving up on a completely restored immune system but in the last few years my CD4 numbers have steadily climbed, and this week they reached numbers I’d previously have considered stratospheric. 800! Wow!
But here’s the fly in the ointment. I am probably feeling less well, less mobile, less pain-free than I have ever been. The culprit is the peripheral neuropathy in my feet which, if not quite getting out of hand – I can still walk, although not any distance - is certainly making life difficult these days. (I've mentioned this ailment numerous times in my blog here. PositiveLIte also featured an article on this quite common HIVer’s condition here.
Now, the not-so-perfect patient in me seldom gets in to much of a discussion with my doctor. Dr No-Bedside-Manner has a brilliant mind, it’s clear, and knows his stuff backwards, but he is a man of few words. You have to draw him out. Which I decided to do this week. He was surprisingly forthcoming chatty even. It made me realize that the model of care I’d chosen – essentially putting 100% faith in one’s doctor and not really being part of the decision process – may not be the right one for me after all..
In any event, Dr NBM seemed well up on the latest in the treatment of peripheral neuropathy. In the past we’ve relied on nortriptyline to relieve the symptoms (chronic hot 'n stingy feelings in one’s extremities, caused by damaged nerve-endings repeatedly firing, a side effect of HIV meds I took years ago) which frankly hasn’t worked. The now chatty Dr NBM, engaged in the topic, told me about Gabapentin, a drug which sometimes works, sometimes doesn’t, around which there had been some controversy as to whether clinical trials results were valid. His take was that it was worth a try. The downside was minimal.
Next, Dr NBM called in the pharmacist, Now the HIV clinic I go to is a multi-disciplinary one. Doctors there work hand-in-hand with the resident pharmacist, as well as with a social worker, nutritionist and a psychiatrist, if needed. When it works well, it’s a beautiful thing to behold. It worked well with me last week.
Young but knowledgeable pharmacist guy, who gives new meaning to earnest, went through the background and the controversy surrounding Gabapentin (which controversy btw I can’t find much reference to on the internet), which resulted in a joint decision – me, Dr NBM and earnest pharmacist guy - deciding to give it a try. I felt really good about the process.
So I started taking gabapentin this morning. This brings to eight the number of drugs I’m taking – five HIV meds plus three meds which address the side effects of these meds. (For the curious the five HIV meds are norvir, isnetress, truvada, prevista and intelence; the three others I take to control the side effects of these are ramipril, nortriptyline and now gabapentin. Jeez! We're a lonmg way away from one-pill-a-day. Now I know why I rattle when I walk.)
So that’s my sharing for today. I’ll keep readers posted about what results if any I get from the gabapentin.
Don’t by the way, think that I obsess over this stuff. I don’t. I’m one of those who at least likes to give the impression I’m over HIV, that I’ve negotiated a truce with the virus. I don’t talk about it; it doesn’t talk about me. But the virus hasn’t been playing fair lately. It’s been feeding me good numbers while ratcheting up the symptoms.
Given those circumstances, it seems appropriate to re-evaluate my approach to my own heath care once in a while, to see if the old model of leaving it all up to Dr NBM really makes sense. And I don’t think it does.
Maybe it’s time in fact to get serious – to ditch my little scrappy piece of paper and turn to spreadsheets, like the big boys use. And that’s just a start.
* Post-script. After writing this post, I contacted Sean Strub of POZ asking if he would comment on why he posted his lab results way back then. This is what he said . .
"In terms of publishing my labs, it wasn't particularly courageous. I was publishing everything I was curious about and those mysterious lab reports were at the top of the list. It was also cheap editorial content and it gave me a lot of free advice from experts! We consciously sought to find contrary opinions, so the article would have one Dr. saying "Sean needs to do x..." and another Dr. saying "what Sean shouldn't do is x..." to demonstrate how even experts often disagree on the best course of treatment.