#22

Is itt possible that in this case (or in the case of autoimmune disease prevention) that Rapamycin is simply doing its approved indicative effect: reducing immune response? And this is why it is helping people who’s immune system is attacking their own bodies? And this is also why there may be a dose response for you? If this is the case, rapamycin wont “cure” anything but will need to be taken forever to correct this “symptom”. (Still could be amazing for you)

Or is there evidence that raamycin actually changes the autoimmune response and “cures” it? That would be amazing.I have a daughter with (fairly recent) TiD and id love to find a way back for her.

I know keto/carnivore isn’t popular on this forum, but many of the people who come to it have been very sick — many with autoimmune diseases — and whatever aspect of this diet (elimination diet, nervous system quelling) seems to work for many of them (not a clinical research trial). And there is some ancillary evidence that if youve been on the diet for some time that you can ease your way off it without losing the effects. There is some speculation that all this diet really does is get you metabolically heathy but not much else. Not suggesting anyone try this. Also i have vitiligo (a minor autoimmune) and i still have it after three-ish years of mostly low carb so it did nothing in this respect for me. (By the way: “keto/carnivore” has been mentioned as terrific for many people with crohns disease, and nervous system disorders — first medically used for epilepsy — but not sure there’s much mention outside of this in autoimmune.)

#23

have you considered daily dosing instead of weekly?

#24

No, one purpose to take high dose is to expect the rapamycin can pass blood brain barrier to reach my brain…

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#25

My father used to have “back stiffness”, a chronicle spine inflammation caused by autoimmune attack. I am willing to take rapamycin for the rest of my life in exchange of free movement…:slight_smile:

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#26

Absolutely with you.

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#27

Yes, I tried LDN. It didn’t seem to help much… but I’ve considered giving it another go. Never tried TA1, maybe I’ll put it on my todo list… but I didin’t see any compelling research.

#28

There is actually evidence supporting low carbs helping many AI diseases. I’ve been doing a very strict diet called, Specific Carbohydrate Diet (SCD): How It Works & Benefits , and it does seem to help; and there is evidence to support it for crohn’s.

As far as Rapa helping with A.I. diseases because it is immunosuppressant, there is no question that immunosuppressant doses of prednisone (or other corticosteroids) help me feel 10x better. But Kaeberlein always insists that Rapa is mis-categorized, and that it doesn’t suppress the immune systerm, but it modulates it. I’m not an expert in this, so I can’t really comment here.

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#29

This video is set to private now, but can be listened to here:

I plan to start rapamycin when it arrives. I will read this excellent forum more before starting, but is there any updated info on what the optimal dose is if the purpose is to reduce fatigue and reduce inflammation (in my case PET-scan confirmed mild aortitis that I suspect is causing my fatigue)?
My plan is to start with 1 mg/day or once weekly 6 mg/week.

And what blood tests to take before starting and during to monitor?
I plan to do the recommended blood tests right before starting and perhaps monitor daily or weekly some markers, especially serum angiotensin converting enzyme (ACE) which in my case is at or above reference range and I suspect a form of sarcoidosis is causing my aortitis and elevated ACE.

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#30

I don’t remember how high the “ultra high” dose was. My recent dose was 16mg with a grapefruit (perhaps equivalent to 48mg). I have had two blood tests since the dose and am having another blood draw tomorrow.

As it stands I think it is possible that it has had some particularly good effects, but also it may have caused a growth in infection as a result of holding back the immune system. Neither of these would be inherently surprising, but I will have to review the overall position in a couple more weeks.

What I would say is that even less frequent dosing means less of an issue with lipids/glucose.

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#31

1 mg/day is too high, 1 mg EOD (Every Other Day) is safer, but the weekly dosing is probably a better idea, usually people start at 1 mg/week and work their way up to around 5 mg/week.

That case was between 500 mg and 1000 mg.

Around 10 mg/day can cause sepsis and death.

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#32

I would tend to agree that 10mg a day would be risky. However, I am talking about 50mg every n weeks (where n>3).

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#33

@John_Hemming beside higher infection risk and sleep disturbances which youve mentioned, has this dosing resulted in any other effect? Good ones in particular?

How does it make you feel? Tired or euphoric? I would fear such a dose.

#34

I am neither tired nor euphoric. I would like some more test results before saying anything else.

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#35

I have read (here somewhere I think) that daily dosing (unless at a high dose) doesn’t get across the blood/brain barrier as well as higher doses do. I am currently trying 6mg/GFJ (about 18mg) every 2wks. I was dosing 6mg a week before. w/o actual blood tests though I don’t really know if either is better and i feel no different bewtween the two.

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#36

If you don’t feel any difference between 6 mg and 6 mg + GFJ, you may not be using real Rapamycin! For me the difference is night and day.

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#37

Then that would mean all my Biocon is fake. or GFJ doesn’t do anything for me. and it was 5mg before not 6mg but that’s not a huge difference.

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#38

Oddly enough i dont feel a difference from my various doses, but my biomarkers notice.

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#39

There is another very real possibility, the GFJ you are consuming is very low in inhibitory factors. There is GFJ that has little to none and there is some that works (Simply brand?).

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#40

I use Simply brand from my local wallyworld.

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#41

No that doesn’t necessarily indicate that your Biocon is fake. You’re not necessarily supposed to feel anything subjective when taking rapamycin. Some people get noticeable side effects with relatively high doses whiile others don’t. Also you can’t conclude that the GFJ doesn’t do anything for you just because you don’t subjectively feel a difference. GFJ very likely increases the dose you absorb, but it’s possible you’re not taking enough GFJ or that even with the incresased absorption you still don’t notice any subjective effects.

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