Sunday, August 26, 2007

What to do? What to do?

This weekend, I received my latest series of AIM injections. My butt is on fire (literally hot to the touch) and I've had flu-like symptoms, as well. I also received my latest labs, this week, which have set of a bit of a firestorm with my primary care and ID doctors. If I was at a decision point, last month, the current situation is really starting to call my bluff.

Here are my latest stats:

Viral Load: 249,000
CD-4: 122

In purely clinical terms, I guess this means that I've pretty much made the transition into AIDS territory. Even so, I've been bombarded with opposing opinions about what these figures really mean. On the one hand, my primary care doctor has effectively handed me off to the ID doc, ceasing oversight of my AIM experiment. My ID doc, however, has been opposed to this trial from the beginning, and states that anti-retroviral treatment is indicated well before one reaches these levels. I was able to convince him to wait one more month before forcing a decision about anti-retroviral meds, but he insisted that I at least get started on Bactrim (an anti-biotic) to protect me from PCP (pneumocystis pneumonia). I really hate taking anti-biotics, but due to my diminished confidence in the AIM treatment protocol, I consented.

On the other hand, I have the AIM folks telling me that this is all to be expected. They say that my body is actually rebuilding non-infected t-cells, and that the t-cells I do have are healthier and more responsive than someone with a higher CD-4 count but where those cells are infected. Further, they point out that I haven't been sick (other than the prostate infection) during my year on AIM, and they also mention that my strong injection site reactions indicate a very good immune response. What troubles me, though, is that every time I report my general condition and symptoms, the AIM folks get defensive and try to shift blame to other factors. In my opinion, researchers conducting a clinical trial should approach my condition-related reports without bias or a ready rebuttal. The AIM folks have even gone so far as to call into question the efficacy of the labs that I use (per insurance guidelines), requesting that I only use one of the two major labs here.

One other thing that's causing me to have doubt is this. I was originally told that I'd reach undetectable levels after six months, with the subsequent six months of maintenance treatments designed to leech out any latent or hidden virus. Here we are, a year later, and my counts are worse than they've ever been. I'm no clinician, but even I have enough sense to realize that I'm literally betting my life on this regimen. I realize that they've switched me back to the original AIDS formulation, but is it too little too late?

The thing that really troubles me is that my memory, concentration and focus have really diminished over the summer. I am having a difficult time composing this post, in fact, something that used to come very naturally to me. I am further concerned that these symptoms, coupled with fatigue, will start to have a noticeably negative impact on my work performance. It's a catch-22, really. I have got to keep the job in order to maintain health coverage, and despite my doubts, AIM could still come through for me. However, if I lose my job because of a stubborn insistence that an experimental treatment will result in a cure, I am risking everything. If I were to become unemployed with full-blown AIDS, what then? Institutionalized health care? Bureaucratic case workers? Partial or full disability?

What would you do?

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