From Alive & Well Emailer, January 16, 2004
Questions About T Cells? Join the Club!
By Christine Maggiore
 
“The notion that T cell counts tell all prevails despite the fact that no studies have ever compared these numbers in HIV positive and HIV negative matched risk groups, or tracked counts among HIV negatives with illnesses that fit the AIDS category.”
 
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A big question on a lot of minds is the meaning of T cell counts. As HIV positives, we’re encouraged to believe the counts provide absolute information on the state of our health. At the same time, we are discouraged from considering the evidence of our actual health which often contradicts what the numbers say.
 
The notion that T cell counts tell all prevails despite the fact that no studies have ever compared these numbers in HIV positive and HIV negative matched risk groups, or tracked counts among HIV negatives with illnesses that fit the AIDS category.
 
Because T cell tests are not routinely given to people without positive HIV status, we have precious little data on what the numbers are in the general population or how 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, among various ethnic groups, between sexes, etc.
 
While most doctors believe HIV positives live and die by the numbers, others acknowledge that less than 3% of human T cells are found in the peripheral blood where tests can measure them. Given this fact, some practitioners prefer to judge health based on other data--like health.
 
Since 1993, most Americans diagnosed with AIDS (between 50% and 85% depending on the year) are clinically healthy, illness-free HIV positives who are told they have AIDS based on T cell counts alone.
 
At Alive & Well, we hear from many people with "low" T cell counts who enjoy normal and even exceptional health. We also meet many people with T cells in the "normal" range who are ill. Further, we find that T cell numbers rarely correlate with viral load counts.
 
Although AIDS experts claim viral load accurately measures the amount of virus and that HIV destroys T cells, we see many situations that contradict this popular position: People whose T cells are low despite low viral loads and those with high T cells who also have high viral loads. Sometimes, changing the lab that reads the tests can change the numbers completely along with a prognosis, a decision about medical intervention, or an outlook on life.
 
In one week, we heard from two different individuals with high viral loads and low T cells who turned out to be HIV negative!
 
In my experience, both personally and professionally, T cell counts, viral load numbers and wellness or illness rarely follow what we are told to believe about HIV, AIDS and health.
 
With all this in mind, Alive & Well started the 200 Club, a peer support contact list of people with T cell counts of 200 or less who are willing to discuss their health experiences and treatment decisions with others.
 
Please let us know if you’d like to increase the numbers of our 200 Club by joining the list. To join, send a message with "200 Club" in the subject heading that includes a brief description of your particular situation and how others may contact you.
 
Given the lack of comprehensive data on T cells and clinical health, our experiences provide invaluable insight and inspiration to others.

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