Hi, I’m female, 70 with long time CFS, and follow Cort Johnson’s blog Health Rising. A retired doc in 70’s said he was virtually cured of his fatigue taking rapamycin so I’m trying it. Started at just 1mg, then 3, 4 and now 5 last 3 weeks. Lately I’ve been slightly nauseas, has anyone else had this? No other side effects. I got mine from a place listed in a book I read by Ross Pelton - the anti aging store in the UK but when I received said it came from China and says Profound products on package. Does anyone else get it from them? I’m just finding this site and haven’t done what is says here, to read up etc, just read his book and started taking, and did hear of it from Peter Attia. Thanks for any advice.
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Hi and welcome to the site.
Please post your result with rapamycin and CFS as things progress. We have a number of people here trying it for that. You can see these past discussions on this topic by using the search button at the top of the screen or by clicking on this link
https://www.rapamycin.news/search?q=Cfs
Regarding your question about a nausea side effect, its something some relatively small percent of people report on rapamycin. its more common as you go higher in dosing, and some people also see diarrhea. Perhaps a slower approach to increasing dose, or going back to a lower dose, may be of help? Many women here take a slightly lower dose than men, in part because their weight is lower. You can see the discussion on rapamycin side effects here: Side Effects of Rapamycin (part 2)
Some people use that source you mentioned but people use many different rapamycin sources here. You can look at the top of our home page (from a computer or laptop, but not a phone), there is a link that says “buy rapamycin” which is a list of all the most common sources of rapamycin, price comparisons, etc…
Hope that helps.
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Thanks so much for the info. I had seen those other sources that I’ll try but good to know what I’m taking now is at least known to others. Will definitely check out the chronic fatigue link - I saw that one person here had it as a side effect! Puzzled nausea isn’t more prevalent I’ll get blood work to see if it’s something else if not will go down to 4, but I’m 140 pds so not small. Thanks again. Betsy
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HI Candle
I’m a smaller woman and I have taken 6mg 3 times, and while I’m tired the first couple of days, I seem to be doing better than I usually do later on in the week. Less foggy and more focused with a little more energy. I might just have more energy from being more focused, I’m not sure. But, in general, I can already tell I feel better on rapa.
No one has said I have chronic fatigue, but I’ve had energy issues all my life. I am also mild ADD (untreated) and hypothyroid, so it’s hard to know what causes what with me.
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I’ve had CFS for 20 years, but mine is likely due to Crohn’s disease. I believe I noticed improvements at higher doses, like 14mg/week, for several months, but I’ve had a little bit of a relapse over the last week… but this could be related to a bit of a flareup.
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Hi, I’m 65 with long-term CFS. Have you had any success feeling better with the rapamycin? Thanks, Alex
Hi Alex so sorry you have to put up with this dreadful condition too. I’ve had no improvement at all. Started late April got to 6mg over a month but went down to 4 the last month as thought it might be making me worse. Some folks here say they take a months break after a few months so I just started that. Not sure I’ll reorder after it’s gone.
How about you?
I really want to try it, but am hoping to hear of other people’s experiences first. Sorry to hear that it hasn’t worked for you. xx
You might as well try it Alex, can’t hurt. Are you here because of the retired doc on Cort’s blog who it helped so much?
IMO: I think it is often the case that people have depression without realizing it and it frequently manifests itself as chronic fatigue syndrome.
Of course one of the treatments for CFR is cognitive behavior therapy which I am not a big fan of for several reasons; it is expensive, and insurance is unlikely to pay for it.t
“The effectiveness of CBT for chronic fatigue syndrome (CFS/ME) is still under investigation, with mixed results.”
I think many people with CFS are depressed without really knowing it. Because depression often is a gradual thing, people believe that how they feel is normal.
I would look for treatment for depression. It would likely not harm and have a positive effect on your CFS.
I have personally noticed how much my mood affects my energy level.
Best wishes on your quest to conquer CFS.
Yes I am. My hesitation is that I had a small basal call carcinoma on my face though and one expert has said not to take it for that reason. But I’m still trying to find a good reason to take it and another expert to say go ahead.
Trying 2 mg rapamycin + a tea glass of grapefruit juice per week may yield better results. The risk of side effects from high dose rapamycin is higher in older ages.
I’ve had one too on forehead - never heard not to take rapo because of that. Hummmm….
Alex, have you read up on the literature on this issue. I’ve not read extensively, so don’t quote me, but I believe sirolimus may be helpful for this issue:
Transplant recipients who develop cutaneous squamous cell carcinomas are at high risk for multiple subsequent skin cancers. Sirolimus has been shown to reduce the occurrence of secondary skin cancers
Use of sirolimus was associated with a 56% decreased risk of non-melanoma skin cancer
Topical rapamycin cream to reduce facial skin cancers in organ transplant recipients
I am a cfs patient who first earned of rapamycin through that same article. It didn’t work for me and the consensus that I see from reading several CFS and long covid forums is that very few of us are helped by it. Given the low risk and cost it is worth a try.
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