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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Jonas
#26
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.
Jonas
#27
what a story, thanks for sharing!
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Jonas
#28
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.
https://www.researchgate.net/publication/370885355_A_masked_placebo-controlled_randomized_clinical_trial_evaluating_safety_and_the_effect_on_cardiac_function_of_low-dose_rapamycin_in_17_healthy_client-owned_dogs
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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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I’ll be talking with Dr. Gordon next week, on July 18, and will ask if the study is providing the amount of data that they need in order for the manufacturer to warrant a longer 3-year double blind study. I’ve known her since 2006 when my current dog’s great grand sire Poseidon participated in the Pimobendan double blind study that lasted about 3-1/2 years. He had occult DCM at the age of 5 which was also a requirement back then to be a participant. Poseidon was the last surviving dog in that study and went on to live another 3 years, never becoming symptomatic for DCM…the Pimo being provided for his lifetime. His death in 2012 was unrelated to DCM, but he was one of the few, if not the only one, that didn’t fatally succumb to the disease. It wasn’t too long after that Vetmedin came on the market and helped so many Dobermans and other breeds but didn’t receive full FDA approval for several more years.
I’m hoping the REPAIR study information you quoted has been updated and there is more positive information since it was written. My boy Jackson’s 6-month participation ends next Tuesday, but I know for a fact that without Rapamycin, DCM can rapidly worsen. Two months ago at our last visit, there was another male participant whose condition was quite similar to Jackson’s, though 3 years older, that unfortunately rapidly declined within 2 weeks after stopping the Rapamycin. Unfortunately, at the end of her boy’s 6-month participation visit this past January, the owner was not given the study drug, and she was unaware that it was to be provided by the university for the duration of his lifetime…a truly unfortunate incident of miscommunication. She and I talked at length, and she described his decline from an asymptomatic occult stage to developing arrhythmias, other DCM symptoms, and an even more enlarged left ventricle…all occurring just 2 weeks post cessation of the Rapamycin. I was there when Dr. Gordon was speaking with her, assuring her that they would treat his worsening conditions to the best of their ability, giving her Rapamycin to take home and then scheduling refills. I hope he survived, not only because he’s beloved family member, but in particular because his owner is a very experienced scent work trainer and her dog an SAR (search and rescue dog).
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Thank you for your suggestion. I’ve taken NAC for at least 3-4 years but not Glycine. I’ve just read some of its benefits, which include aid in sleeping, production of collagen, providing cellular energy, and anti-inflammatory benefits…all of which I need. I take many, many supplements now but will certainly consider adding Glycine.
Unfortunately, none of them have increased my ATP levels which I have had checked quarterly for many years. The glutathione IVs and an occasional Meyers Cocktail and vitamin C IVs seem to be the combo that maintains a low but functioning amount of ATP. The addition of NAD+ injections twice a week lengthened the amount of time between the IVs, but now they are no longer available to me. Without my “Glut Juice” and as Fibro/CFS patients can attest, fatigue in the form of “weak as a noodle” insidiously sets in. One day, you realize that all Fibro trigger points are tender and BOOM you’re at the point of being laid up in bed due to weakness with every muscle on fire.
However, I’m very hopeful that the 3 months of non-stop energy since beginning Rapamycin will be at least a tool in my kit to treat this 16-year bout of Fibro/CFS/ME which seems to be my “forever” constant, though not welcomed, companion.
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I believe you only get the glutathione boost if you take glycine and NAC together since both are limiters in GSH production.
This is the seminal piece.
And
For the PMR, I started out on 30mg of Prednisone and then over a year it got tampered down to zero. Initially in steps of 5mg and then 1mg steps. I understand that relapse does happen to a lot of people. So far it hasn’t for me and I hope it doesn’t! The Prednisone is almost as bad as the disease. I also hate that the way they diagnose PMR is if you are in pain, have high ESR and Prednisone makes the pain go away, then you have PMR. I felt like since Prednisone makes it better, there is little interest in the medical industry to look for something better.
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Hi, I was diagnosed with CFS in the UK in 1985. So I’ve been struggling with it a long time. I had two severe bouts of 5 years and 7 years and in between I managed to feel pretty normal so long as I didn’t do too much exercise. I relapsed after covid last year. After 3 weeks of rapamycin I feel more energetic (1mg, then 2mg then 3mg) and was planning to continue taking it weekly at 3mg, but this week I am craving carbs and putting on weight and my blood sugar is raised. So I am now wondering what to do next.
Hi, Thank you so much for your response. It’s great to hear of someone with CFS taking rapamycin. After 3 weeks I’m feeling more energy (I think) but I am also craving carbs and I have put on weight this week and my blood sugar is raised. I already take Berberine/Metformin so adding them won’t make any difference. So I’m now wondering what to do next. I want to take rapamycin because I’m pretty sure that I’m already feeling a bit better, but I also don’t want to continue to put on weight and have higher blood sugar which makes my brain feel groggy. So now I need to look into whether I can still get the benefits of rapamycin ie helping my CFS, if I take a lower dosage, or take it less often. Hmmmm. Don’t know and I’m due to take 3mg again tomorrow …
I can certainly understand your concern. My glucose levels tend to run on the low side, and in fact I was diagnosed as being hypoglycemic decades ago so my lab work from a week ago reported my glucose and insulin levels at normal levels. Like you, I also CRAVE sugar, mainly in the form of fruit, but also starch, and colas. What I’ve done recently to combat that and hopefully help lose weight is to Fast. I started about 4 weeks ago, mainly to spur on autophagy, but also to lose weight. I fast on my Rapamycin day, and am also intermittently fasting the other days of the week. It’s strange, but I look forward to that Fasting day, knowing that I don’t have to think about food. I do not crave sugar or starch at all; however, once I eat a sugary piece of fruit or a tiny crouton, the craving for more sugar become quite noticeable. Apples seem to be my fruit of necessity now…not a fan, and I don’t eat any starch or processed sugar at all.
I don’t know if you’ve ever been prescribed the host of awful drugs for fibromyalgia, but I’ve was prescribed 5 different drugs back during 2007 and 2008. Cymbalta, Nuerontin, Flexeril, Zoloft, and the worst of the bunch…Lyrica. None worked for the pain, but they were terrific at adding 50 pounds of stubborn, want to stay with me forever and forever, FAT. As I’m sure you can relate, finding something that seems to be helping me on all fronts is something I will try my very best to continue.
Best of luck with your RAPA decision tomorrow!
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Thank you! And maybe I’ll try a fast tomorrow 
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Berberine gave me food kravings. N(1)
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That’s not the case. NAC is well known to increase glutathione when given alone. Although glycine can be rate limiting at times, NAC is more likely to be rate limiting under most conditions.
After reading the Baylor study, it was my impression that glycine was more limiting than cysteine. However to see any real benefits, both glycine and cysteine needed to be taken in almost equal amounts. Higher levels of glycine were used in relation to cysteine.
