After reading at your web site and from other AIDS rethinking resources, Iím starting to question going in for my labs every three months. Between the lack of research on what these numbers mean and the psychological torture of worrying about the results (not to mention the cost), Iím really wondering if itís worth it on any level.
Do you still do your counts?
I quit doing T cell counts back in 1994 after finding a lack of substantive research to support their use as indicators or predictors of health. I based my decision mainly on the fact that there are no published studies comparing T cell counts in HIV positive and HIV negative matched cohorts and seeing that my counts did not reflect my actual state of health.
Another problem with T cell counts is that, according to AIDS experts, less than 3% of T cells are usually found in the peripheral blood where tests can detect them. From what I understand, they tend to reside in the lymph tissue.
I had my highest T cell count (1700) while still recovering from pharmaceutically induced immune suppression (mismedication due to a misdiagnosis having nothing to do with HIV or AIDS before I tested positiveóitís a long story), and as my health returned to normal (I stopped having monthly outbreaks of massive cold sores and swollen glands and other fun symptoms), the numbers got lower.
I still remember the day I made the decision to stop doing T cells. Iíd been weighing the evidence for some time, but as I drove home from my office on a crowded Los Angeles freeway with thousands of commuters whizzing by, it suddenly occurred to me that none of these people knew or cared about their T cell counts. I realized that most everyone in the general population has no clue as to what their T cells are and no one is testing them to find out.
With the research in this area so obviously lacking, and having had the personal experience of counts that do not correlate with wellness or illness, I no longer feel the necessity to participate in these lab rituals. A T cell count can only confirm or contradict my actual state of health.
Fortunately, I donít have to fight my doctor on the T cell issue as he agrees. We judge my health mostly by my health. For example, I got the flu this past winter for the first time in 15 years. It lasted three very long days and I couldnít keep any food down the entire time. Even though my lack of energy had an obvious explanation, I saw the doctor just to be sure. He told me the average HIV negative person will have a flu for a week to two for weeks, not three days, and to return in 10 days if I was still feeling unusually tired. I was back to my normal blazing energy less than a week later, which in his opinion was faster than normal for the majority of HIV negative people considered to be in excellent health.
I would gladly do my T cell counts as part of an experiment in which my blood (and ideally that of many other HIV positives) was drawn and sent monthly to two or three different labs for T cell and viral load testing.
Good luck coming to your own decision,
to T Cells and Viral Load FAQ's - High T Cells, High Viral Load--What's Up?
to Risk Realities