Hello! This forum has been extremely helpful so far so I thought I would introduce myself.
I’m a 38 year old female, and a bit different than some here as I just started rapamycin as a potential treatment for ME/CFS (previously known as Chronic Fatigue Syndrome). I have been ill for 9 years now. Of course I’m delighted to read about all the longevity benefits! As many potential treatments for ME are anti-inflammatory, they tend to align with anti-aging. I’m currently taking a powerful probiotic, low dose naltroxene, and an omega with fish oil and evening primrose oil. I’ve taken many other supplements, but these are the only ones that have definitively helped.
I’m certainly not trained in medicine but have had to make a lot of inferences over the years, so excuse me if anything i say is completely off the mark scientifically!
There was a study published this summer on how WASF3 affects the endoplasmic reticulum in muscle cells of people with ME. This led me to look at drugs that might affect ER function, and I found an article on a Rapamycin recovery story and Dr. Green in Health Rising, a popular ME/CFS blog.
This led me to contact Dr Green. He was pleased I made the connection with ER function, and said I had a good chance of remission. Of course I take any ideas of recovery with a grain of salt after so long, but any improvement in my quality of life would be highly welcome.
He has me on six mg once a week. I started 6 days ago with the full dose, and have had no side effects.
My biggest concern is my cholesterol as I am genetically predisposed to high cholesterol, and have had it since I was fifteen. I have a low cholestrol diet, with little difference. I have avoided statins because they can reduce coQ10 levels, which is really bad for someone with ME.
However, I also have low blood pressure, and low blood pressure along with high cholesterol can sometimes be due to underlying health issues. ME/CFS can cause high levels of inflammation, and patients are shown to have endothelial damage so it is possible improvement in my overall health would help balance my cholesterol levels.
My other concern is immune issues. I live in a city, and fear catching covid and other bugs because I developed chest pain and cognitive issues after catching covid. I’ve read a lot of contradictory information on the once weekly dose. Does weekly dosing increase susceptibility to airborne viruses?
Anyway, so nice to be on this forum and excited to meet all of you.
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