Experiences w. neurodegenerative diseases (Charcot Marie Tooth or others) & rapamycin?

I have a disease called CMT1A where bad protein accumulates which affects the production of the myelin sheath.

I’ve previously done a 14 day water fast to increase autophagy, and am considering getting on rapamycin to see if it can help get rid of some of that bad protein.

I was wondering if anyone has had any similar experiences with neurodegenerative diseases (MS, CMT, or others), or any wise thoughts they’d like to share.

I’d appreciate any and all feedback. I do vitamin K2 with MK7, lecithin, and a couple of others but would love to connect with anyone in the same, or a similar boat.

2 Likes

Hello Thomas… I am not sure if this is in the same ball park… but I was experiencing progressive dysphagia and eating and swallowing became very difficult and even fearful. At age 63 years, 1 year into rapamycin - 6mg once per week, it is gone. Can eat anything… dry with no liquid. My son had similar issues at age 30. He started rapamycin… 3 months later…his swallowing and my swallowing issues completely gone… seemed to be neurological. Pretty sure it was the rapamycin

Good luck.

2 Likes

Glad to hear it fixed it for you. How long have you been on it?

Could doctors see any neurological reasons why it happened or was that just speculation?

1 Like

On it 2 years this August. Unfortunately it is speculative. It had reached the point I knew something needed to be done… see an ENT… getting medication… even surgery.

Glad it is gone.

I can imagine it must be scary to feel you’re becoming unable to swallow food. I appreciate you sharing! I’ve been on the fence regarding starting… Generally pretty skeptical when it comes to medicine, but rapamycin also just seems to do wonders for a bunch of folks.

1 Like

Having protein glycans of a 37 year old I am 64… Methylation of 51 years… it’s doing good.

1 Like

Most people here experience few and only mild side effects and neutral to positive effects of rapamycin.

I never heard of CMT only of Charcot’s foot (unrelated to cmt, just discovered by Charcot too), so it’s probably pretty rare.

Rapamycin probably won’t do you harm and might help but I don’t think anyone here knows. Since you look very lean and were already willing to do 2 week water fasts I think there’s not much harm in trying rapamycin instead…

2 Likes

Hi Thomas
Actually there was this study that came out in 2020 showing a benefit in MS from rapamycin.

This study in 2018 also showed benefits from rapamycin on the myelin sheath

Regulating PMP22 expression is a potential option of a “cure” - I suppose increasing autophagy could potentially work to bandaid it but nothing definitively afaik. This is something you need to talk to an expert researcher in CMT.

Thanks for sending over the MS stuff, rivasp12. MS is, unfortunately, (because mine is not) autoimmune, so I’d suspect greater effects because of it.

I’m also just curious about anecdotal stories because most of the studies I’ve found that support my taking rapamycin are based on mice models. For the longest time, the scientific community didn’t even think the myelin sheath could be regrown.

I’m pretty sure it depends on who you ask in terms of what can be definitively not regrown. I know a few folks in the scientific community that think entire limbs can possibly be regrown almost 2 decades ago. I wouldn’t say they’re “wrong” in terms of the possibility.

CMT overall is pretty rare anyways but I hope you are able to find an anecdote. I’ll also point out most people tend to be taking many different things.

1 Like

Understood. From my research, rapamycin is just what seems to likely be the highest probability. I think it’s a mental hurdle for me to get over to just push forward with starting the treatment.

1 Like