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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.
FAQ's
References
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