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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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The role of IP-10 in Chronic Fatigue Syndrome

eljefe19

Senior Member
Messages
483
Wow @eljefe19 I am glad you are doing so well :)

Thank you for sharing your experiences and keep us updated please !!!!
Hey, thank you internet friend, that's kind of you to say. I'm only saying Ron Davis should know since I'm now the 7th person I know to have benefit such as me from this drug. I figured it's time he hear that unlike what he said in his last video, Rapamycin actually appears to counterintuitively work, and by at least 3 possible mechanisms!
Cheers!
 

eljefe19

Senior Member
Messages
483
Thanks for being n = 1 and for sharing your great response, gives us all hope.

Are you taking 1mg each day? Do you anticipate taking it every day, or will you stop and see what happens?

A quick search says I can buy it (in Canada) for $900 US per 1mg pill. Did you find a cheaper source?

Thanks.
Ay Scott, buddy, no worries.
I got the hook up on the 1 mg tabs, and they are just under $200 for 30, and something like $550 for 90.
PM me.
I'm thinking I'm going to do a 3-4 month course and then stop and see.
 

AdamS

Senior Member
Messages
339
@adreno VSL#3 passed by the looks of the article, but yeah, I doubt any of those yoghurt drinks would help a disease as complex as ME/CFS to any great degree. Sounds like Rapamune is the front runner currently :D
 
Messages
19
Hey, thank you internet friend, that's kind of you to say. I'm only saying Ron Davis should know since I'm now the 7th person I know to have benefit such as me from this drug. I figured it's time he hear that unlike what he said in his last video, Rapamycin actually appears to counterintuitively work, and by at least 3 possible mechanisms!
Cheers!
Not surprised since Rapamycin is an immune suppressant like Rituximab, so by tamping down the immune response the CFS/ME sufferer feels better. I'm reluctant to try it as it may be that the immune response is a reaction to a pathogen. What if Dr. Pridgen is right and it's caused by a herpes infection in the CNS? He will be doing anti-viral phase III trials later this year, so maybe it would be better to wait and see, otherwise one could be exposed to unwanted complications from a weakened immune system.
 

necessary8

Senior Member
Messages
134
Hi Jaime,
I am now three days into starting 1 mg Rapamycin, so take with a grain of salt, but I feel basically cured.

Okay what the actual hell? We had decent arguments that mTORC1 inhibition is an important part of the mechanism. And now taking the main mTORC1 inhibitor makes people cured? What?

I'm sure there is some way to make sense of this, but it's beyond me. Would someone try to hypothesize how this is possible? @nandixon? @JamieS?

Also, @eljefe19, are you one of the people who took acne antibiotics right before their illness started? Or are any of the people who improved with rapamycin in that group?
 

eljefe19

Senior Member
Messages
483
I wouldn't get too excited over a week of modest improvement. Maybe in 3-6+ months when the person in question is working full time and exercising regularly, I might get excited.
Agreed, that's why I said take with a grain of salt. However, @Tunguska has described in great lengths how Rapamycin could be causing immediate relief. Inhibition of mTorC1.

Oddly, Rapamycin reliably activates Akt and Akt dependent pathways upstream of mTOR, which likely outweighs the mTorC1 inhibition.

Next to add to Rapamycin will be NA-R-ALA, following @Tunguska, I have faith in you, @nandixon , @Hip , @adreno and all the others too. Does any of you know of any other mTor-/Akt+ agents? Or just simply Akt activators??
 

cigana

Senior Member
Messages
1,095
Location
UK
Does any of you know of any other mTor-/Akt+ agents? Or just simply Akt activators??
Possibly resveratrol:

"This investigation demonstrates that PI3-K/Akt activation is an important signaling in resveratrol-mediated activation of AMPK phosphorylation..., and inhibition of...cytokines production in response to LPS"
 

dreampop

Senior Member
Messages
296
Agreed, that's why I said take with a grain of salt. However, @Tunguska has described in great lengths how Rapamycin could be causing immediate relief. Inhibition of mTorC1.

Oddly, Rapamycin reliably activates Akt and Akt dependent pathways upstream of mTOR, which likely outweighs the mTorC1 inhibition.

Next to add to Rapamycin will be NA-R-ALA, following @Tunguska, I have faith in you, @nandixon , @Hip , @adreno and all the others too. Does any of you know of any other mTor-/Akt+ agents? Or just simply Akt activators??
I'm happy your feeling better, but can you be more clear about your me/cfs symptoms and the response to Rapamune? You said you felt almost cured but only specify brain fog as having improved. Things like pre-treatment and post-treatment fatigue score, activity levels, neuro-muscular or allergy symptoms, pain levels, orthostatic intolerance severity would help us all understand how significant the Rapamune treatment has been.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Okay what the actual hell? We had decent arguments that mTORC1 inhibition is an important part of the mechanism. And now taking the main mTORC1 inhibitor makes people cured? What?

Just stumbled across another thread where I explained why a blocker can help as well as harm.

Many blockers fit into the receptor (others change the shape of the receptor so docking can't occur). If they do, they may have a low-grade effect that could help a deficient patient. If they do, they would also prevent the more active compound from fitting into the receptor, helping a patient with the compound in excess.

Not sure how rapamune works, though, so I can't verify this is the mechanism in this particular case, just that this can be the case. :)
 

necessary8

Senior Member
Messages
134
Many blockers fit into the receptor (others change the shape of the receptor so docking can't occur). If they do, they may have a low-grade effect that could help a deficient patient. If they do, they would also prevent the more active compound from fitting into the receptor, helping a patient with the compound in excess.

Oooh, that is an excellent point. Thank you.
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
Having specifically tried VSL-3 and had a terrible neurological response, I would NOT recommend

It was terrible for me too and having had my microbiome analysed by American Gut I think I know why. If I remember correctly it contains high amounts of L Acidopholus which can feed pathogenic bacteria. i try and avoid any probiotic that contains this because it irritate the SIBO I very easily experience whereas the Bifido type probiotics don't. Prescript Assist is one of the best ones for me at the moment.

Pam