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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What's worked for me

eljefe19

Senior Member
Messages
483
My brothers and sisters of PR, I needed to make a treatment plan for my doc, explaining my self medicating, and figured I'd share it with you all. So far, I have made some major improvements in quality of life, and my latest purchase is a possible home run.

It all comes down to the Akt/mTORC1 pathway, as first described by @nandixon. Something is causing Akt/mTORC1 to be underactive, which causes a ton of downstream problems that cause the symptoms of ME/CFS. Just last week a study came out describing that the ratio of Activin B/Follistatin indicated low follistatin in ME/CFS. Turns out, follistatin is a strong inhibitor of Myostatin, a naturally occuring mTORC1 inhibitor.

So now, on top of my regimen of Akt/mTORC1 activators I have added YK-11, an inducer of Follistatin.
The Akt/mTORC1 activation regimen I have been taking now a month has led to less PEM, less fatigue, less pain and improved mood. There are some good threads on here about Akt/mTORC1 activators.

I am too tired to add references or a list of specific mTORC1 activators right now but I will edit them in.

YK-11 can be purchased at nootropicsource.com
 

jpcv

Senior Member
Messages
386
Location
SE coast, Brazil
i'M impressed by the knowledge o of biochemistry/metabolism that people show here in this forum.
My oncologic patients are much more ignorant about their illness.
Right now the new frontier in cancer treatment is imunotherapy, a few years ago it was targeted therapy, meaning that if a specific type of cancer had a mutation in a gene, let's say, mTOR, it was possible to develop a drug that would shut down that abnormal protein expression. It worked, but most of the time the tumor would stop to respond to treatment, because metabolic pathways are so complex ,interconected and redundant that blocking just one point or pathway is not enough.
My question : is it the same with ME? can we expect some kind of objective improvment just by manipulating one target?
Answers, please...
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
My brothers and sisters of PR, I needed to make a treatment plan for my doc, explaining my self medicating, and figured I'd share it with you all. So far, I have made some major improvements in quality of life, and my latest purchase is a possible home run.

It all comes down to the Akt/mTORC1 pathway, as first described by @nandixon. Something is causing Akt/mTORC1 to be underactive, which causes a ton of downstream problems that cause the symptoms of ME/CFS. Just last week a study came out describing that the ratio of Activin B/Follistatin indicated low follistatin in ME/CFS. Turns out, follistatin is a strong inhibitor of Myostatin, a naturally occuring mTORC1 inhibitor.

So now, on top of my regimen of Akt/mTORC1 activators I have added YK-11, an inducer of Follistatin.
The Akt/mTORC1 activation regimen I have been taking now a month has led to less PEM, less fatigue, less pain and improved mood. There are some good threads on here about Akt/mTORC1 activators.

I am too tired to add references or a list of specific mTORC1 activators right now but I will edit them in.

YK-11 can be purchased at nootropicsource.com


Thats good news. Have you looked at the other sarms as well. Theres a couple that work on mitochondria that look interesting, one they say increases the number of mitochondria, i cant recall its name.

I am using ostarine currently which i was hoping it would help my back pain which it has. It's suppose to help with anabolic processes in muscle, bone and ligaments etc. Its convinved me to order more plus try some those other sarms like cardarine or andarine.

Cheers
 

eljefe19

Senior Member
Messages
483
Thats good news. Have you looked at the other sarms as well. Theres a couple that work on mitochondria that look interesting, one they say increases the number of mitochondria, i cant recall its name.

I am using ostarine currently which i was hoping it would help my back pain which it has. It's suppose to help with anabolic processes in muscle, bone and ligaments etc. Its convinved me to order more plus try some those other sarms like cardarine or andarine.

Cheers
Nope I'm just interested in YK-11 for it's unique ability to induce Folllistatin.
 

eljefe19

Senior Member
Messages
483
By the way @A.B. Even in the article you cited, it said that in order to use YK-11 you have to read all available literature which I have done. It is not an anabolic steroid and it doesn't have many of the side effects of anabolic steroids because it's not androgenic and it's MOA is novel. Everything I do is monitored by my doctor. No safety data doesn't equate to not safe. It's not "simply irresponsible " it's a choice and weighing possible safety concerns with possible benefits. We've never been closer to the causative mechanisms of CFS, so this is not some Hail Mary approach.
 
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eljefe19

Senior Member
Messages
483
I'm bumping this thread because I believe treating the Akt/mTOR pathway can help a lot of sick people here.
I and others have had quality of life gains from activating mTOR. Real tangible improvements.

I see so many threads on methylation. Methylation is downstream of mTOR and is regulated by mTOR.
mTOR is absolutely crucial to the pathogenesis of this disease and we have in vivo results that validate the theory.

People, becuase of @A.B I have to put a a disclaimer on everything I say.
So understand that YK-11 has no safety data.
However it is not supposed to act like an anabolic steroid
@A.B. If you read a little more you would have discovered that it doesn't cause androgenic side effects. It's mostly a Follistatin inducer.

I'm not saying that everyone should go try YK-11. I'm simply informing people of it's existence.
Even simply taking Leucine and Glutamine will improve Akt/mTOR function.
There is a range from low risk to high risk and people on here are free to choose their approach.
Who here is tired of being sick and wants a damn treatment already??
I'm not selling snake oil here, I have no vested interest other than to share knowledge with my fellow patients.
If YK-11 isn't your thing, I recommend trying Tramadol. Tramadol upregulates Akt/mTOR and improves pain, fatigue and PEM. It's a really good drug for ME/CFS.

I've attached my complete list of medications. Be safe people and have a doctor supervise your self medicating.
@A.B. I'm being supervised by Dr. Kaufman at the OMI. I don't need your interjections on my posts because you are simply wrong. It's not irresponsible to take a chance at remission. It's a personal choice.

Anyways, if anyone wants to talk about mTOR in more detail feel free to PM me.
Peace and love.
 
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Skippa

Anti-BS
Messages
841
I couldn't care less what you think.
It's also not similar to anabolic steroids, it's not very androgenic.

I think you mean: "thanks, its important that folks stumbling across this page are properly informed, always weigh up the pros and cons folks, just sayin' it worked for me".

There, isn't that nicer? You still get to "reveal your cure" whilst also remaining somewhat responsible.

(Personally, I'm glad for human guinea pigs such as yourself, and folks like @Hip . But if you read a lot of hip's posts, s/he's always careful to mention any *potential* risks too).

:hug:
 

eljefe19

Senior Member
Messages
483
Sadly good intentions don't guarantee good outcomes. It's your body and life, but other members here on the forum should at least be made aware of the lack of safety data.

I was too fatigued to give references on mechanisms and safety or lack thereof etc.

There are lots of people on here interested in the type of experiments I'm doing. You don't need to judge me for that. I'm trying to help people and I'm willing to guinea pig. I think that's a pretty noble approach...
 
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Thinktank

Senior Member
Messages
1,640
Location
Europe
@eljefe19 , thanks for sharing your experience and i'm glad to hear it's helping you.
I too like to experiment and the mTOR theory sounds interesting, it's certainly something i will read upon.
Don't mind the naysayers, just try to ignore overly negative comments and report the people who keep bugging you to the admin.
 
Messages
10,157
Our forums exist so members can have conversations/debates about various different topics. A member is free to say whatever they want as long as the comments are on-topic to the thread and they don't fall under a rule breach.

It's entirely valid to post about potential risks of any therapy. It adds balance to any conversation and is also helpful to members who don't know anything about a particular therapy.

When you start a thread, the thread does not belong to you. This is a public forum. You can't control who posts what. We are a diverse group with many different opinions and points of view.

Posting a different opinion or disagreeing with another member is not 'derailing' a thread.

Once you focus on the personality of a member rather than the content of a post, that is wandering into the territory of a personal attack.

If you feel a member is consistently derailing threads, report them. We will investigate but I can say right now that this thread was not derailed by a member having an opinion. It was derailed by personal attacks and demanding members 'get off the thread'.

Please avoid any further personal attacks. If this thread gets derailed again by rule breaches, those engaging in the rule breaches will be banned from the thread.

Thank you.
 

eljefe19

Senior Member
Messages
483
So how does this translate to CFS/me in terms of how it works?

I get upregulation of mTor, what I don't understand is the scale of impact of different drugs/supplements and why some would be better than others?
We don't know which supplements or medications activate mTOR the most, which is why I'm trying everything. So far Tramadol has been extremely helpful and Leucine/Glutamine are essential for mTOR activation. The latest research indicates low Follistatin, which is supposed to keep Myostatin (an mTOR inhibitor) in check. So that's my latest angle and I'm trying YK-11 and MYO-X to inhibit Myostatin and induce Follistatin which should result in more mTOR activation. I'll report back but until then make sure you're taking your aminos!!