My first dose was 6mg. I got a canker sore.
I would be interested to hear what you find too. Were you “officially” diagnosed with CFS? I ask because I finally got to see a CFS specialist at Stanford. After going thru some questioning and testing we concluded that I am suffering from fatigue but not specifically CFS. Earlier I had a bout of Polymyalgia rheumatica (PMR) another autoimmune disease.
Though the doctor didn’t think I had CFS per se, it was clear there was some kind of history now of autoimmune / inflammatory tissue for me. She asked if I wanted to try an “off label” use of a medication that they were finding helped with inflammation of the brain that could cause fatigue. It’s a micro dose of Naltrexone! (She didn’t offer Rapamycin even though I asked).
It turns out that similar to how Rapamycin has an almost exactly opposite impact when done at low dose vs high dose, Naltrexone has a very different effect when used at micro dose levels. At normal levels it binds and blocks opioid receptors. At micro dose levels it has an anti-inflammatory effect and can reduce some chronic pain and fatigue. The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain
I’ve been taking it for about a month now. Fatigue is so subjective. I know when I am having it, but when I’m not so fatigued I can forget what being fatigued is like. That being said. I do feel like my level of fatigue and “brain fog” has been reduced. I am able to do concentrated work at levels I haven’t been able to do for a long time. Is it placebo effect? I can’t be sure. But it does seem like I’m in a much better condition.
I still want to try Rapamycin though if I can ever find the right doctor setup to do it with…
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One thing about the Low Dose Naltrexone that I was warned about and it seems true. Much more intense dreams. I have not found that uncomfortable. I actually been liking that. They have not been disturbing and in general have been positive. People also complain of headaches but I have not had anything bad.
Here’s another interesting article Low-dose naltrexone as a treatment for chronic fatigue syndrome
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Since taking supplements, I have forgotten what being fatigued feels like. It seems like I am either “ON” (full of energy) or “OFF” (time to sleep).
Of course, there is the euphoric fatigue I get from Rapamycin, but at lower doses, that becomes less fatiguing.
Is there data showing Rapa as treatment for CFS?
I think it started to become interesting to people due to this anecdotal account: Chronic Fatigue Syndrome Put Into Remission By Rapamycin
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The article, as mentioned by RapAdmin, first got my interest. A few people with CFS have reported benefits. And Dr Alan Green apparently prescribes for CFS. That’s all I know.
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Just stumbled into this paper - perhaps of interest:
mTOR activation is a biomarker and a central pathway to autoimmune disorders, cancer, obesity, and aging
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Luckily I no longer have PMR after a year of taking Prednisone. If I had a relapse I would try Rapamycin instead of going back on to Prednisone.
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Hello, Alex! I thought I’d share my Fribromyalgia/CFS story with you since I’m also taking Rapamycin. I’ll be 70 in August, and I started 5mg Rapacan by Biocon on March 29, 2023…so a full three months now. I had no issues at 5mg for 8 weeks so then increased it to 7mg. I also take it with a grapefruit supplement, 1 tablespoon of virgin olive oil and have recently added metformin 4 weeks ago. I take it weekly on Thursdays around noon.
Regarding Fibro/CFS, I contracted it in May of 2007 after a Chiari Decompression surgery, which as you know a neurological trauma can cause it’s onset. I struggled with it for many months trying to get it under control for a followup surgery I needed 7 months later. Glutathione IVs got it under control, and I was able to undergo the second unrelated surgery. Since 2007, I’ve continued Glutathione IVs every 1-3 months, then 2 years ago I added NAD+ injections, twice a week. Those injections allowed me to lower the number of IVs without lessening my ATP levels.
Unfortunately, my Internist can no longer get the compounded injections so I have been without; however, the timing aligns with my beginning Rapamycin. To my delight, I have not needed to get a Glutathione IV for 5 months and feel more strength and energy than I have in many years. I attribute it to the Rapamycin because at this point, I normally would’ve needed at least 2 IVs to continue functioning without the weakness which I’m sure you’re quite familiar.
Good luck to you on your Rapa Journey!
If you have any questions, you can email me at saracasper71@gmail.com
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I thought I’d jump in here, since I also have Fibro/CFS, as to why I decided to start on 5mg weekly initially for longevity, but as I related to Alex a few minutes ago, I’ve experienced quite positive results with my Fibro/CFS. After doing a little research and seeing the doses Dr. Matt Kaeberlain and Dr. Alan Green began with, I decided to follow them…as well as my dog.
As an aside, I was first introduced to Rapamycin when I was able to get my Doberman accepted into the REPAIR study at Texas A&M being conducted by their Chief cardiologist Dr. Sonya Gordon. Before applying for the study, I did a little research about Rapamycin being used in conjunction with the DCM medication Vetmedin (pimobendan). That’s how I came to learn of its longevity application, which in fact is also being studied at A&M in their TRIAD study which Dr. Matt Kaeberlein began at several universities.
My 88-pound male Doberman takes 9.6mg of Rapamycin every Friday at 7:00 at which time we also take his respiration. The study is a 6-month pre-clinical one so all participants are getting the study drug which will also be provided to them for their lifetimes. He completes it in 2 weeks and has done wonderfully. Every 2 months, I take him in for a full work up, which includes an echocardiogram, EKG, full panels of lab work, urinalysis, and a 24-hour holter monitoring which I do from home. His cholesterol and triglycerides have remained in the normal range.
The instructions were explicit about taking the full dose on the same day and at the same time. I randomly decided that if my 88-pound dog can take 9.6mg weekly with absolutely nothing but positive results, I could begin with 5mg weekly and now 7mg weekly, which is in alignment with Dr. Kaeberlein’s and Dr. Alan Green’s initial dosages. I know they’ve both changed their dosing schedules, but for now, I’ll just keep following in my dog’s 
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Thanks for sharing! Above you mentioned about grapefruit juice and virgine olive oil. Do I understand that you take it with 7mg Rapamycin? Because that can increase the effective dose a lot. It could land on 21 mg weekly which is very high weekly dose.
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Yes, you’re correct; however, the grapefruit juice is actually a supplement capsule containing the equivalent of 25 drops of NutriBiotic grapefruit seed extract liquid concentrate (250mg). It’s my understanding that Sirolimus in tablet form is difficult to absorb, and the addition of grapefruit, in my case GSE, and 1 tablespoon EVOO helps with absorption. My assumption is that my body will hopefully absorb more of the 7mg that I take, not amplify 7mg to 21mg.
Since I have had no negative side effects whatsoever that so many other respondents have mentioned, I believe I’ll stay the course and continue to closely monitor my quarterly lab tests.
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The rapamycin levels can also accumulate over time if they are not cleared out after each dose and this can postpone side effects later on. One way to check this is to take blood tests on the Rapamycin levels to check if they are cleared out in the end. I have not done it yet but my plan is to do it now in the autumn.
By the way, what brand of Rapamycin are you using?
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Have you thought about supplementing with Glycine and NAC instead of getting glutathione (GSH) injections? Both of those amino acids are GSH precursors and allow your body to produce more GSH and reduce methionine and glutamine.
I think that you may not be getting the enzyme nullification effect from a grapefruit seed extract supplement which is why people usually use grapefruit juice. If the supplement is as effective as grapefruit juice, Krister is correct in that it should be acting like a 21 mg effective dosage. That’s pretty high for a weekly dose! However, I think you are probably getting a 7 mg dose equivalent. The best way to check would be to do a blood test to find out.
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what was the dose you were on for PMR? My mum also had them. I wonder if relapse is a probability. and how were you diagnosed? My mum had a very high ESR at the time and had a biopsy after that.
what a story, thanks for sharing!
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a study by Dr. Sonya Gordon: introduction Geroscience studies of low-dose rapamycin in laboratory species have identified numerous benefits, including reversing age-related cardiac dysfunction. Cardiovascular benefits have been observed in dogs with 10 weeks of treatment, raising questions about the possible benefits and adverse effects of long-term use of low-dose rapamycin. The objectives of this study were to assess the impact of 6 months of low-dose rapamycin on echocardiographic indices of cardiac function in healthy dogs and to document the occurrence of adverse events. Methods Seventeen client-owned dogs aged 6–10 years, weighing 18–36 kg, and without significant systemic disease were included in a prospective, randomized, placebo-controlled, masked clinical trial. Low-dose rapamycin (0.025 mg/kg) or placebo was administered three times per week for 6 months. Baseline, 6-month, and 12-month evaluation included physical examination, cardiology examination, and clinicopathology. Three-month evaluation included a physical examination and clinicopathology. Owners completed online questionnaires every 2 weeks. Results There were no statistically significant differences in echocardiographic parameters between rapamycin and placebo groups at 6 or 12 months. No clinically significant adverse events occurred. In 26.8% of the bi-weekly surveys owners whose dogs received rapamycin reported perceived positive changes in behavior or health, compared to 8.1% in the placebo group ( p = 0.04). Discussion While no clinically significant change in cardiac function was observed in dogs treated with low-dose rapamycin, the drug was well-tolerated with no significant adverse events.
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So no measurable changes in the parameters they tested except that the Rapamycin dogs exhibited positive changes in behavior and health. I guess that means the researchers were measuring the wrong parameters!
However, it is hard to quantitatively measure changes in behavior and observational ‘health’. But it does speak to the potency of Rapamycin. It’s doing something positive that affects lifespan.
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