long term survivor issues
Nov 4, 2013
diagnosed 1989 full blown, many health issues and many, many meds later dealing with neuropathy, chronic fatigue, loss of strength, energy & stamina among others. Undetectable VL and t-cells over 500 but wondering what effects years of meds and living with virus might do cumulatively and how normal aging (just turned 58) might factor in as well. Generally in decent health now but ability to live "normally" has noticeably diminished especially in last 5 to 10 years. Tire quickly, lack energy and stamina, muscle loss, etc. Am in normal weight range and try to be active, just wear out! How does one know if it's living 26 years with virus, taking meds for over 20 years or just getting old?
Response from Mr. Vergel
I know what you are talking about. Many of us long term survivors who were exposed to mitochondria toxic drugs like Zerit (D4T), DDI, AZT, hydroxyurea show symptoms of diminished stamina and other issues. I have spoken about it and what I do to manage it: Nelson Vergel: Going Beyond Survival
Some studies show that some of our metabolic parameters and functional capacity may be similar to HIV negative people who are 15 years older than us. The challenge for us is to find ways to somehow maximize our quality of life to compensate for that accelerated aging. Health Tips
Some of us have found ways to continue living and making the best of it. But making the best of it can be difficult if we feel tired and worn out: Tired of keeping on fighting
I am finding a lot of active support groups and a movement in which we are starting to support each other through this path. This project is one of the exciting ones taking hold in San Francisco and hopefully spreading around the country:
Hang in there, be kind to yourself and do not accept that your quality of life cannot be improved with or without pharmaceuticals.
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