Rapamycin (an immuno-modulator / immunosuppresant) cured my POIS!!!! Wow!! =)

[cyberguy137]

I just wanted to share rapamycin...

I am a 36 year old male who has had POIS since 2015. My main symptom is brain fog and cognitive dysfunction. It would last throughout the next day and was very intense. Sometimes it would linger for 2-3 days. I generally was unable to work much on the 2nd day.

So , I had this brain fog once every week or every 10 days or so for years.

I went to a neurologist and multiple doctors. I tried NSAIDs, antihistamines, wellbutrin, and a few other things.

The only thing that helped a bit was niacin, taken beforehand. I read that niacin reduces brain inflammation. SO, I started to think it was an inflammatory condition.

I was reading about rapamycin, which is used as an anti-aging drug. Turns out it reduces inflammation and many people with autoimmune conditions have reported it helps them.

So I gave it a try. First time took 1mg before and 2mg afterwards, and it cured the condition! I repeated a week later, same result. Plus it seems to have boosted my overall energy level slightly.

I'm studying the mechanism now -- pretty complicated stuff.

I got mine here (I explained the POIS to them and they gave me a prescription) :
https://gethealthspan.com/

They also included some blood testing.

You can also buy it cheaper from overseas pharmacy if you want to save money, but there's a chance it might get siezed by customs.

Anyway, I hope this helps some of you!!!

As an awesome "side effect" rapamycin has been shown to increase lifepsan by 20%+ in animals. They are studying it in dogs right now (https://dogagingproject.org/)

Here are some good podcasts on it:
https://www.youtube.com/watch?v=O67pvKxio10&ab_channel=PeterAttiaMD
https://podcasts.apple.com/us/podcast/exploring-rapamycin-longevity-and-healthspan-with-dr/id1646922196?i=1000644763436

[Muon]

Rapamycin is a mTOR inhibitor. mTOR is already on the list of POIS theories.

https://x.com/scubatropin/status/1797735765142855785

Dr. Curley:

RAPAMYCIN is how we discovered mTOR, it was discovered on Easter Island, I am very familiar with it. Unfortunately, it is VERY difficult to get someone to prescribe it for you and second, it drastically reduces the immune system. Its essentially the pill version of HIV.

Muon:

Yes, according to your profile you are studying mTOR, which is the reason I tagged you. I have seen a paper from dr. Theoharides which mentioned that mTOR inhibition can stabilize mast cells, is that correct?

Dr. Curley:

I do believe that it would be very effective for POIS, but its a hell of a risk compared to abstinence. I mean, they give it to prevent organ rejection.

[cyberguy137]

Interesting.

mTOR has many effects.

If you listen to that second podcast (between Joe Cohen and Kaberlein), you'll find out that it doesn't drastically reduce immune system function, especially at the dose I'm taking (3mg / week).

Dr. Curley is mistaken. One weekly dosing doesn't lead to the plasma levels that are obtained through the daily dosing that organ transplant recipients use. Furthermore, it is better understood as an immunomodulator, not an immunosuppresant, but unfortunately it was given that label by the FDA early on and it's stuck.

A lot of people in the longevity community take rapamycin weekly in doses ranging from 2 - 20 mg a week. According to Kaberlein, a population study on people who take it weekly don't show any higher incidence of infection.

People who take it do not report getting colds or flu more frequently.

It's also quite easy to get through Healthspan and many longevity and wellness doctors prescribe it now.

[cyberguy137]

I replied to his tweet, by the way:
https://x.com/moreisdifferent/status/1797782249318007032

[Enix]

 Be careful the side effects, particularly skin cancers...

[freddie]

this seems promising. thanks for sharing!
How long have you used Rapamycin, is it only a couple of weeks?
did you get advice to take regularly or to take it only before and after ejaculation?

[cyberguy137]

Here's a quick update

The first 2 times it seemed to help a lot, but then the 3rd time it really didn't. So I increased the dose to 6 mg. 6 mg is what is needed to get up to the concentration that is used for kidney transplant. So far I've tested 6 mg once, and while it seemed to work there were a bunch of confounds. It is helping but I'm still evaluating because it's not perfect.

I'm attaching a plot I made of concentration on once a week 6mg vs 2 mg every day (what is prescribed for organ transplant patients).

The cool thing about ~once a week dosing (standard in the longevity community) is it doesn't continually suppress your immune function all the time. However, Kaberlein showed a slight increase in infection risk in weekly dosers. Interstingly, kaberlein himself got an infection while taking it. So it is not without risks. I believe the risks are low overall and outweight the benefits. I just got follow-up bloodwork done soon from http://gethealthspan.com to see if it has effected my cholesterol, triglycerides (which were high) , a1c, and CRP. I'll share those results when I have them - they may be of interest.

[freddie]

I tryed one dose rapamycine, approx. 6 mg. It was amazing. It damped my prostatitis to almost zero.
My prostatitis started as pois, i.e. it was temporary at first, but with time it became more persistent and lately it was practically chronic (still strongly correlated to ejaculation, though), very frustrating. I would have never hoped to get such a result.
I have not tried again because of a temporary non-health-related issue. I will try it again later, but at a lower dose. Not that I have experienced any side-effects, but I have a feeling that the dose was rather strong, so I will test to take less. I almost feel that I do not need it. So good I have been feeling. I took it about two weeks ago. I understand that it is very early to draw conclusions, but this was so great I wanted to share it with you all anyway.

I should even mention that I have started a chelation protocol based on Andy Cutlers protocol. I started it about 3 weeks ago. This was also very successful. I felt my energy level skyrocketing, which cannot be due to the chelator, so I am guessing that it is the supplements that I am taking that are making me feel full of energy.

I can't believe that both these therapies are working so well. what's the odds of starting two therapies in two weeks and both are giving me results far beyond what I was expecting. In a way it is a pity that the effect of the two therapies may be mixed up, but my feeling is rather clear regarding which is which. Anyway I am not complaining here, I am totally happy!!!

[Mr Raba]

In this post a medical Dr. who put himself in remission from  CFS with Rapamycin.  Very informative.   I think this is key.  Since I have both CFS and POIs.   

https://www.healthrising.org/blog/2022/07/06/apamycin-resurgence-doctor-chronic-fatigue-syndrome/