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.
I have looked into this quite a bit and there are certainly conditions where glycine might become quite rate limiting, maybe even more than NAC, such as in very old people. But this appears to be the exception rather than the rule. Cysteine is generally well recognized as being usually rate limiting for glutathione synthesis. In support of that, there is a wealth of evidence for NAC increasing glutathione levels when given in isolation while evidence that glycine does the same without NAC is scarce.
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Yes, most glycine and cysteine deficiencies are in older people. Could you share the information that shows cysteine is rate limiting in younger people? I always want to expand my knowledge base.
Any study that shows that cysteine or NAC given alone (without glycine) is proof that cysteine is rate-limiting for glutathione synthesis. Such studies are easy to find on PubMed. Here is one example that was done on young adults: Modulatory effect of N-acetylcysteine on pro-antioxidant status and haematological response in healthy men - PubMed
Here is more evidence from cell cultures in animals:
“In cultured neurons, the availability of cysteine limited the cellular level of glutathione.”
This is from this study: Synthesis of the antioxidant glutathione in neurons: supply by astrocytes of CysGly as precursor for neuronal glutathione - PubMed
Hi,
I recently started taking Rapamycin for CFS too. Started 1, then 3,4, and 5 on 4th week and have taken that 2, maybe 3 times. Will let you know if it helps in the months to come. I’m having occasional slight nausea so if regular blood work shows no other reason may go down to 4. Good luck!
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Maxi
#45
Hello Alex,
How are you doing since July 23 ?
I have ME/CFS, just joined this group and started Rapamycin:
Rapamycin dose regime for ME/CFS? - General - Rapamycin Longevity News
Best, Maxi
Hi Maxi,
I got a Basel Cell Carcinoma removed from my face in January 2024. I gave up on rapamycin after about 6 weeks because Adam Bataineh said to me, on an exploratory phone call, that I shouldn’t be taking rapamycin if I have a history of skin cancer. So I was very disappointed, but stopped. However, I already recovered from M.E. for 19 years on a ketogenic diet. My husband died in 2020 and I lost the plot and went back to what most people eat. Within a year my ME returned after a bout with covid. On 11th September 2024, 5 months ago, I’d had enough of ‘enjoying’ what everyone else eats and went back to what worked before. I restarted the ketogenic diet, and within a week I started picking up. I’m really good now and went travelling around Albania in December and am about to go to Morocco. For me, the ketogenic diet worked the first time - and the second time. After a month of keto, I learned about the carnivore diet, a stricter form of keto (but easier to do) and I feel completely amazing on it. So I would love to go back on rapamycin, or use rapamycin cream, but I am too nervous of it given what Adam Bataineh said.
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scta123
#47
Did he explain why? I thought rapamycin showed a decrease in non melanoma skin cancers in transplant patients. What is the rationale behind not using it. @desertshores fights his precancerous AK quite well on his rapamycin regimen and his skin toner with rapamycin.
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I thought the same as you but he said the research isn’t there and until it is he wouldn’t recommend it. I was very disappointed.
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