Should I Keep Testing My T Cells?

Dear Christine,

I’ve been HIV positive since at least 1986 and apart from a case of pneumonia during a really stressful period in my life (I lost my house, my partner and my job all in one week), my health has been better than that of my HIV negative friends. Every winter when people at work come down with the flu and colds, I manage to stay well. Years ago my doctor and I arrived at an agreement that he wouldn’t prescribe the AIDS meds unless I were ill. As a consequence, I’ve never taken antiretrovirals, but I do keep up with regular T cell counts.

My counts have always been on the low side of normal, so I almost feel like I’m waiting for the other shoe to drop when I test. The only time I feel really ill and nervous are the four times a year when they draw my blood for the T cell test.

Am I making myself sick and stressed for no good reason? In your opinion, should I keep doing the labs?

Thanks for any help,

Frank D

Dear Frank,

As HIV positives, we are encouraged to disregard the evidence of our health—how we are actually feeling and performing—and go by tests and numbers that some claim are better indicators of our health than our actual health.

Unfortunately, reliance on T cell counts as indicators or predictors of illness is not well founded. No studies have ever compared T cells in HIV positive and HIV negative matched risk groups. Also, T cell counts are not routinely given to people who don't test HIV positive leaving us with precious little information on what T cells are in the general population.

We also don’t have much information on how T cell counts may fluctuate over long periods of time and in various circumstances such as in states of illness or injury, during periods of stress, as we age, during menstruation, among pre- and post-menopausal women, among various ethnic groups, between the sexes, etc. And we have no studies that reveal the T cell counts of HIV negatives with illnesses that fit into the AIDS category such as lymphoma, cervical cancer, candida, TB, herpes, and other commonly occurring conditions. Further, some mainstream AIDS specialists point out that less than 3% of human T cells are found in the circulating blood where tests can measure them.

In my work, I hear from and meet many people with "low" T cell counts who enjoy normal and even exceptional health. I also know of people with "normal" T cell counts who are ill. Further, I find that T cell counts tend not to correlate with viral load counts. While doctors say viral load is an accurate measure of virus, we see all kinds of situations in which T cells are low despite low viral load and high T cells in people with high viral loads. In my experience both personal and professional, these numbers rarely match up to what we are told to believe about HIV, AIDS and health.

Sometimes, changing the lab that reads the test can change the numbers entirely. You might want to try this to see what happens. Or better still ask your doctor to send your blood work to two different labs for T cell testing. I have not yet heard from anyone whose numbers were the same or even close when they got tests done on the same blood from two different labs.

Ultimately, you need to make a decision about continuing with T cell tests based on your own research, your own understanding and your own experience.

I hope I’ve been able to help some,


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