I ordered your book after reading an article about you in Mothering magazine. Thank you for not taking the party line with this baffling disease.
I tested HIV positive 15 years ago, two years after a bout of hepatitis and endocarditis. I was an intravenous drug user at the time, but through 12 Step Fellowships, I have been drug free ever since.
Over the years, I’ve been on every AIDS med and cocktail out there. Though I have experienced only minor side effects, I constantly feel fatigued and depressed which makes it very hard for me to keep up with my job which requires lots of energy and focus. I also suffer from high cholesterol and blood pressure, problems I never had before taking the cocktails.
I’ve been seeing the same doctor since getting my diagnosis. He is a kind and caring person, but when I recently asked him about taking a holiday from the drugs, his response was "Absolutely not!" He said my T cell count, which was 350, was too low. But my T cell count has always fluctuated from 350 to 480 over the past 15 years and I have never had an opportunistic infection.
I want to stop taking the drugs but my biggest fear is what if he’s right about my T cell count. What if I'm wrong? At the same time, I'm sure these drugs will eventually destroy my liver. Any advice you can give me would be greatly appreciated.
I can only imagine how difficult it must be to maintain the level of energy and focus needed for work while on drugs that make you tired and depressed. I know how distracted, easily frustrated and unmotivated feeling lousy can make you feel. When my children were younger they would wake up hungry six or eight times a night. The next day was always very hard to manage, especially when trying to be a thoughtful and patient mother to energetic kids.
With regard to your fears about T cells, I used to live in terror of my counts to the degree that I would get in car accidents after almost every lab test. I would be driving back from the doctor worrying about whether the numbers would reveal I were living or dying. Eventually, I would quit paying attention to what was in front of me and crash. After four fender benders, I started looking into the subject of T cells and found there is very little data to support the notion that T cell counts are accurate predictors or reliable indicators of health.
For example, there are no studies comparing T cells in HIV positive and HIV negative matched cohorts such as positive and negative hemophiliacs, positive and negative IV drug users, positive and negative gay men with a history of STDs and/or drug use, etc. There are also no studies that my critics could offer—after weeks of promises to the contrary—showing T cells counts in the general population over long periods of time and in varying circumstances.
The few writings I've found on T cells in athletes suggest that counts may be below "normal" in very healthy people who exercise intensely. I personally know of several athletes whose own experiences confirm this. One is a yoga instructor who rides his bike around San Francisco and rock climbs for a hobby. He’s had a diagnosis of AIDS based on his T cells for several years without ever being sick, and actually being incredibly healthy and active. Another close friend had a T cell AIDS diagnosis for seven years with no illness beyond the usual cold. Sadly, he began taking the drugs while in normal health based on his T cell count and a viral load of 20,000. He died a few months later.
I urge you to read up on T cell, viral load and HIV tests at our web site and at other sites offering alternative data, especially if these labs are the sole or primary basis for your decision to take the drugs. Also, you may want to read "Molecular Miscarriage" again from the Mothering magazine with me on the cover. It's one of the best summaries on the lack of sufficient evidence for the HIV = AIDS paradigm.
You might also try turning around your question from "What if I'm wrong?" to "What if they're wrong?" and see where this may lead you in your thinking. Since you must live with the consequences of the choices you make, it’s important you feel comfortable with what you decide.
Take care, stay calm and have confidence!
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