ME/CFS

[Blue Jefe]

Hey all,
First post. Tagging @haidut
I would have made this a PM but the forum was denying me saying it was spam. So here I am.
I have ME/CFS which the latest research is showing to be a hypometabolically driven autoimmune condition. I'm trying Mitolipin and plan on buying Gonadin soon. So thanks so much for providing these unique products @haidut!

Here is a great paper from last year that breaks down the specific hypometabolic features of ME/CFS.
Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome

tldr; ME/CFS is characterized by upregulated PPAR delta, SIRT4, PDK1,2,4 and inhibited Pyruvate Dehydrogenase Enzyme Complex. Also we have CD8+ T cell clonal expansion and B cell driven autoantibody production (as you pointed out 95% of CFS patients have anti-cardiolipin antibodies).
Personally I have anti Ganglioside, Acetylcholine Muscarinic and alpha Adrenergic antibodies. I take Rapamycin, the quintessential mTorC1 inhibitor (I had a theory that overactive mTorC1 was involved and Rapamycin has improved my condition probably by 33% and therefore a relative major success).

My personal theory is the Liver X Receptor (of which Squalene is essentially the endogenous ligand) is being suppressed in ME/CFS and we have some sort of hypercholesteremia and liver/bile acid dysfunction. The Liver X Receptor has recently been elucidated to be suppressed during a viral infection and then reactivated to commence resolution of the immune response. My understanding is that if LXR does not resolve the immune response a state of hypometabolically driven autoimmunity can occur. No one has been able to connect this to ME/CFS yet but I'm trying to bring this to researchers attention.

Anyways, I believe @haidut is in a much better position to research/develop/market a product for ME/CFS (I know you cannot claim it's specifically for ME/CFS) than researchers who are strapped for cash and have to rely on patient donations. It's a horrible system that probably won't produce any treatments for us for many years.

Thanks for taking the time to consider this @haidut or anyone else who has any insight here. I'd love to discuss with anyone with a better understanding of metabolism (Econ major here before getting sick).

 

[energyandstruct]

any luck so far?

 

[energyandstruct]

@haidut some thoughts in addition to what's already here... I would love to see an NAD+ product (not niacinamide, not niagen, just NAD+), as it has been shown to bring worms out of Dauer, which Naviaux says is analogous to CFS. I would also be curious about an anti-lactate product, like what peat suggests for replacing DCA ... alpha-lipoic acid, biotin, palmitic acid, etc..., B6

 

[haidut]

@haidut some thoughts in addition to what's already here... I would love to see an NAD+ product (not niacinamide, not niagen, just NAD+), as it has been shown to bring worms out of Dauer, which Naviaux says is analogous to CFS. I would also be curious about an anti-lactate product, like what peat suggests for replacing DCA ... alpha-lipoic acid, biotin, palmitic acid, etc..., B6

The NAD that was given to those worms was injected or supplied in a medium so that it goes directly in their circulation. In humans, consuming NAD is not very effective as it gets hydrolyzed in the stomach. I don't see what is wrong with niacinamide, given that it really cannot really get converted to anything else but NAD.
As far as lactate, B1, B3, and biotin all lower it pretty effectively, and if you need something even more potent then try methylene blue as it is probably more effective than even DCA in lowering lactate. A combination of the B vitamins and MB likely has no current match by another chemical/drug in terms of lowering lactate.

 

[energyandstruct]

The NAD that was given to those worms was injected or supplied in a medium so that it goes directly in their circulation. In humans, consuming NAD is not very effective as it gets hydrolyzed in the stomach. I don't see what is wrong with niacinamide, given that it really cannot really get converted to anything else but NAD.
As far as lactate, B1, B3, and biotin all lower it pretty effectively, and if you need something even more potent then try methylene blue as it is probably more effective than even DCA in lowering lactate. A combination of the B vitamins and MB likely has no current match by another chemical/drug in terms of lowering lactate.

Interesting, I guess I've heard of IV NAD+ working but hadn't thought about delivery method. thanks for the info

my cfs is severe enough that b vitamins haven't really come close to curing it, niacinamide sometimes provides temporarily relief but that's all. thinking that the metabolic problem goes deeper than any of us know, and hoping that the research that naviaux etc are doing continues

 

[haidut]

Interesting, I guess I've heard of IV NAD+ working but hadn't thought about delivery method. thanks for the info

my cfs is severe enough that b vitamins haven't really come close to curing it, niacinamide sometimes provides temporarily relief but that's all. thinking that the metabolic problem goes deeper than any of us know, and hoping that the research that naviaux etc are doing continues

Have you tried methylene blue? Have you been tested for chronic bacterial or viral infections?

 

[energyandstruct]

Have you tried methylene blue? Have you been tested for chronic bacterial or viral infections?

yes, I have been tested, I'll post my labs

 

[energyandstruct]

Here we go, here are the labs thus far. The biggest thing out of the ordinary is all the immune stuff I think, and high IgE. some other labs also showed high eosinophil count, all which seems to point to histamine/mast cell issues

 

[energyandstruct]

Here we go, here are the labs thus far. The biggest thing out of the ordinary is all the immune stuff I think, and high IgE. some other labs also showed high eosinophil count, all which seems to point to histamine/mast cell issues

doctor was talking about doing IVIG but apparently I'd need to do a pneumovax vaccine per insurance rules, to test if i was ****88 up enough, and that might be risky with cfs, so we're trying to figure out treatment still

 

[freyasam]

@debored13 @Blue Jefe --

Any progress treating your CFS/ME? I'm desperate as I've gotten so weak lately. Haven't worked all year. Any idealabs' supplements you found to help? thanks

 

[allblues]

I'm not sure I ever did have full-blown CFS the way others have it, but I've struggled with many of the core symptoms for about two years, trying loads of different things.
Things got sort of better this summer, but especially after finally starting thyroid I've been seeing improvements in basically everything, brain fog has lifted, I can exercise normally, gain muscle instead of just breaking it down. I'm using Tyromix, 1 drop with breakfast. (This small dose is within the range of traditional diet-related daily thyroid intake, if you take Ray's word for it)

If you haven't given thyroid a shot, and don't mind the experimentation, I can definitely recommend it. It really seems to be the essential Peat One Weird Trick for a reason.

 

[energyandstruct]

@debored13 @Blue Jefe --

Any progress treating your CFS/ME? I'm desperate as I've gotten so weak lately. Haven't worked all year. Any idealabs' supplements you found to help? thanks

I'm also getting weaker and weaker.

ProgestE has helped some with pain--muscle pain, being short of breath. Good for coping.

VERY strong chaga tea from chaga mountain has helped me. Haidut's tocovit and lapodin supplements helped some, but this was when I was less sick. It's apparently common for things to just stop helping in ME/CFS but I don't know why. Bag breathing and coffee (but with some source of sugars/glucose/milk like ray recommends) are probably teh only two things that help consistently. Not curative but it helps with pain and air hunger when I really need help coping.

I wish I had more answers, but believe me--if I cure this disease, I'll figure out why and come back here to help those who are still sick.

IV saline helps but the effect is so short lived idk if worth mentioning. I feel pretty good during the infusion itself

 

[energyandstruct]

High dose thiamine might be worth a try. I'm trying thyroid atm and trying to be patient and stick it out even if I get moderate negative side effects. will report when done.

 

[freyasam]

@debored13 please keep us updated; I'll do the same

I can't take over 40 mg thiamin (fat or water soluble) w/o anxiety.

 

[energyandstruct]

 

[brainfog]

Chronic Fatigue Syndrome Cured! Plus many equivalents, alive again!
Sick and Tired of Being Sick and Tired?
I cured my RSI / Fibromyalgia / Chronic Fatigue with Jedi Mind tricks! – John Braine
Chronic Fatigue Syndrome is Autonomic Nervous System Dysfunction

If that got your attention google Dr. Sarno and read more. Im new to it. Dont know much but i think is huge. His cure rate for diffrent illnes was like 85-95%. No drugs.

A Tribute To Dr. Sarno - Steve Ozanich

 

[postman]

In my experience an extremely low intake of vitamin A, and keeping PUFAs below 4-5 grams per day and not eating any other krebs cycle disturbing fats to be very helpful. At least for the cognition/brainfog side of this disease. It did help somewhat with energy levels too but not a whole lot. It makes sense if ME/CFS is considered to be an autoimmune disease.

 

[SB4]

In my experience an extremely low intake of vitamin A, and keeping PUFAs below 4-5 grams per day and not eating any other krebs cycle disturbing fats to be very helpful. At least for the cognition/brainfog side of this disease. It did help somewhat with energy levels too but not a whole lot. It makes sense if ME/CFS is considered to be an autoimmune disease.

Did you or do you experience post carb symptoms? For example my heart pounding and POTS is significantly worse after carbs.

 

[postman]

Did you or do you experience post carb symptoms? For example my heart pounding and POTS is significantly worse after carbs.

No, carbs work fine for me, as long as I keep PUFA intake very low. I also don't eat any other overt fat other than MCT, because it doesn't mess with glucose oxidation, other fats make my brainfog worse but MCT doesn't have that negative effect. I don't have POTS but I used to feel dizzy for a while after standing up and once I fainted from this. But this doesn't really happen to me anymore, I can't quite remember what made it stop. Maybe the things I already mentioned and also making sure to get enough protein.

 

[energyandstruct]

Chronic Fatigue Syndrome Cured! Plus many equivalents, alive again!
Sick and Tired of Being Sick and Tired?
I cured my RSI / Fibromyalgia / Chronic Fatigue with Jedi Mind tricks! – John Braine
Chronic Fatigue Syndrome is Autonomic Nervous System Dysfunction

If that got your attention google Dr. Sarno and read more. Im new to it. Dont know much but i think is huge. His cure rate for diffrent illnes was like 85-95%. No drugs.

A Tribute To Dr. Sarno - Steve Ozanich

Dr Sarno is a quack... Sorry citations for the cure claims would be nice