mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

[Mary]

I tried Now Foods Arginine 500mg and Citrulline 250mg, Capsules for at least a week. Actually, it may have made me more tired, if anything. It's always hard to tell whether something is having an effect, or if it's just regular CFS ups and downs, but I did feel more tired on Citruline and Arginine for what that's worth.

Citrulline and arginine can lower cortisol, leading to fatigue. This happened to me when I tried taking arginine in the morning a couple of years ago and within 2 or 3 days was quite tired - I had been expecting (hoping rather) for an energy boost. I had to stop the arginine and increase my adrenal glandular to get back to "normal".

However, I'm currently trying citrulline at night before bed in an attempt to lower possible high nighttime cortisol (which can cause insomnia) and this is not leading - so far - to increased fatigue. So maybe time of day it's taken is important. But I've only taken the citrulline for a couple of days and am watching out for increased fatigue which might still happen. And I've read that citrulline malate especially is supposed to help with workout recovery but have not tried it yet

 

[XenForo]

@Hip Coincidentally, one of the rapamycin responders told me they took high dose NAC daily...
I would extend to say perhaps it would also help during rapamycin withdrawal.
...high dose magnesium might be indicated to provide symptom relief as well as a preventative measure against bad reactions to NAC itself..

I take 600mg NAC every morning, and 120mg magnesium glycinate at night. (I just take them because my Stanford doc tells me to.)

 

[XenForo]

I'm still not experiencing symptoms - day 9 of enjoying having a life.

 

[Jesse2233]

That’s great @XenForo

Thanks for the report @Hip, sorry it had an adverse effect, feel better

 

[Hip]

I'm still not experiencing symptoms - day 9 of enjoying having a life.

@XenForo, are you able to quantify the improvements you experience from rapamycin in terms of the ME/CFS scale of mild, moderate and severe? Where are you on this scale normally (without taking rapamycin), and how much movement up the scale do you achieve on rapamycin?

 

[XenForo]

@XenForo, are you able to quantify the improvements you experience from rapamycin in terms of the ME/CFS scale of mild, moderate and severe? Where are you on this scale normally (without taking rapamycin), and how much movement up the scale do you achieve on rapamycin?

I'd say I'm usually moderate. Recently I'd say I'm mild, but I haven't tried working full time yet, although I've been active at least 8 hours a day for the past week plus, so maybe I'm in the category of healthy for the past week plus.

 

[ScottTriGuy]

My functional medicine doc phoned me this morning to say my HIV doc sent him a note giving thumbs up for me to try Sirolimus off-label, so will start in a couple of weeks and post my experience.

Excited, but tempered with the reality that not all of us seem to respond.

 

[Jesse2233]

@ScottTriGuy any updates on your rapamycin trial?

Scoreboard of our other trail blazers

XenForo - major response
made_lman / Dallas patient #1 - major response
Ken Lassesen blog reader - major response

Dallas patient #2 - positive response of unknown degree
Dallas patient #3 - positive response of unknown degree
Dallas patient #4 - positive response of unknown degree
Dallas patient #5 - positive response of unknown degree

perovyscus - discontinued

@nandixon - pending (any updates?)

eljefe19 - major response stopped responding
Hip - no response
steve4andrea - no response
Montoya Reddit patient - no response
BadPack - no response

so far 7 out of 13 report response

 

[ScottTriGuy]

Only 4 days so far, but yesterday I walked for about 25 minutes (way more than my 10 minute ceiling) but about an hour later my blood seemed to be pooling in my abdomen (as it does from walking, pretty sure its an orthostatic intolerance thing) for a couple of hours - spent 30 minutes of that being horizontal on my office floor to help recovery.

So I'd say no response yet.

 

[nandixon]

@nandixon - pending (any updates?)

I can report a somewhat similar experience to @eljefe19, I think.

I started at 1 mg per day and I initially had about a 30% improvement in energy (within 24 hours of starting it), but this gradually disappeared (beginning after about a week or so) and I was never able to recapture it even with a number of different dosing strategies over several weeks. And when I re-tried it after a break of 2 or 3 weeks it made me feel worse.

It's important to note that, from what Marcia (@made_lman) said on the other forum in her original posts, that the implication is that the other Dallas patients have other comorbid diseases (autoimmune or cancer) as their primary diagnosis, so I would discount those.

I would therefore think in terms of a possible success rate for rapamycin in ME/CFS at more like 3 out of 10, at best, so far. And both Marcia and @XenForo may have unusual relapsing-remitting forms of this disease.

 

[XenForo]

I'm still doing really well, although I still lose a day here and there, spending that "lost" day in bed.

 

[nandixon]

I meant to report back that my 1/2 of 1 mg rapamune from Goldpharma seems to work much better than this new 1mg rapamune I bought from buy-pharma.co. The buy-pharma stuff is from singapore, goldpharma was from germany. Both said Pfizer on the packaging. I might try cutting the 1mg tabs in half and see if it makes a difference.

Were you able to get the Buy-Pharma product to work as well as the Goldpharma?

 

[XenForo]

Were you able to get the Buy-Pharma product to work as well as the Goldpharma?

It's subtle, but I'd still say it doesn't work as well. It's hard to tell, since I've been doing so well. I think I might be biased because the Buy-Pharma stuff tastes sweet like sugar, which makes me feel like it's fake (so it's hard to be objective about it.)

 

[JaimeS]

I haven't had time to read them (to see if they're relevant,) but these might be Rapamune / Lupus relevant papers:
1. http://twin.sci-hub.cc/5fb0b89abf4342895143b57957ac729f/oaks2016.pdf
2. http://moscow.sci-hub.cc/c10cbc4a4fb80a2992fba8426d2e3721/fernandez2006.pdf
3. http://www.indianjrheumatol.com/temp/IndianJRheumatol12148-5534497_152224.pdf
4. http://twin.sci-hub.cc/b88754aa32d18e79f1afe1de8b70c849/morel2017.pdf
5. http://www.jimmunol.org/content/191/5/2236

Lots of these links dead, now, so:

1) is probably https://www.ncbi.nlm.nih.gov/pubmed/27332042 or maybe https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5314949/

2) is probably: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034146/

3) ... can't tell, sorry Not enough to know it was a paper from that journal.

4) https://www.nature.com/articles/nrrheum.2017.43 probably

5) still works

 

[JaimeS]

Here's a 2010 article in Immunological Reviews that details some of the many effects of rapamycin on the immune system: https://moscow.sci-hub.cc/b1b737c7ceecc0a74e88f854ba87cecb/araki2010.pdf Gosh, it sure effects quite a lot.

Probably this link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760155/

 

[used_to_race]

It's subtle, but I'd still say it doesn't work as well. It's hard to tell, since I've been doing so well. I think I might be biased because the Buy-Pharma stuff tastes sweet like sugar, which makes me feel like it's fake (so it's hard to be objective about it.)

Thinking of trying this myself. Was wondering about a couple things. First of all, are you still responding?

The other thing is this: I had a few months of illness back in 2015 that I believe were an earlier manifestation of my current CFS. During that time I took several antibiotics, under the doctor's assumption that I had chronic strep (what a moron). The only one I responded to was azithromycin, which has a lot of similar properties to rapamycin. I want to compare the prospect of taking each azithromycin and rapamycin. Would one be a lot more risky than the other? Is either a particularly risky thing to try? My inclination is to say not really, but what do you all think? @Hip @nandixon

 

[XenForo]

Thinking of trying this myself. Was wondering about a couple things. First of all, are you still responding?

Yup, still responding.

 

[ScottTriGuy]

I've been on Rapamune for 7 weeks and have had improvement:
- greatly decreased seborrheic dermatitis on my face and head
- can walk twice previous distance on flat ground (now 30 minutes)
- can walk up 2 flights of stairs in a row (only 1 previously)
- sleeping better
- less night time urinating
- better toleration of the cold

I also previously responded to azithromycin during my second bout of ME.

 

[JAH]

I’ve been on rapamune for 5-6 weeks, 1 mg. First week was half dose.

I could tell that I was taking something for the first few days, but since then I’ve noticed no change- good or bad. I could be taking a sugar pill. Weird for me because I’m usually very sensitive to medication. Honestly, my assumption was that I’d feel worse. (I have the negative placebo effect working)

My case is severe.

 

[JAH]

P.S. just an addendum to say that my appetite has increased, dont know if it has anything to do with rapamycin, but my stomach has been s@#t, so happy with any improvement, coincidental or not.