ME/CFS

Evgenius

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Joined
Sep 27, 2016
Messages
119
Yeah this Sarno thing sounds and looks like BS to me. Another it's all in your head cure.
 

LLight

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Joined
May 30, 2018
Messages
1,411
Bacteria in blood from fibromyalgia patients include the Aquabacterium genus, producing metabolites with inflammatory properties in vitro. Results from a pilot study

"Our findings support the hypothesis that FMS represents a condition of chronic systemic inflammation and suggest that the underlying etiology may involve intraerythrocytic bacteria, present at a higher load than what can be seen in some healthy individuals. In addition, the level of secreted bacterial metabolites appears to differ between FMS and healthy individuals. Microbial presence is not equivocal to illness, but the number of bacteria, combined with their metabolic activity, may be so. Further work is necessary to compare the blood microbiome of FMS patients and healthy controls to monitor fluctuations in bacterial presence and load over time. The observation that the metabolites produced during ex vivo culturing differ between FMS and healthy controls suggest that this may be a useful tool for monitoring bacterial contribution to host inflammatory status, and may also open new avenues to test pharmaceutical and non-pharmaceutical methods to control the bacterial metabolic activity, thus helping to reduce the inflammatory state of the human host."
 

Zan92

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Joined
Jan 15, 2020
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1
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.

Interesting about vitamin A. Eating liver after what i suspect was years of vitamin A deficiency gave me a complete remission of CFS on the next day. Unfortunately it only lasted for one day. Same thing happenend when i tried pregnenolone for the first time, only with vitamin a it was much more dramatic. They both still give me a little more energy, better temps and mood and improved vision. Only i can't tolerate doses as high as 10.000 iu of A, because the sensory heightening it gives me seems to be somehow overstimulating to my brain, which is sad, because besides that everything gets better on this higher dose. Vitamin d in higher doses, besides feeling like pregnenolone and removing depression, was frying my brain the same way, although it seems better now (have low levels and need to get them up).

When i stop taking A, D and pregnenolone, i feel calmer and less tense, but also get colder and depressed, my vision is less clear, much worse brain fog, less energy,worse PEM. But my body feels somehow much "easier to move", on first high doses of vit D i felt like my body was almost paralyzed, despite feeling more energetic on "the inside", if that makes sense. Pregnenelone also does that to a degree, and vitamin A, and i think they may worsen sensory overload, for ex. from being in crowded, noisy places. It's like normalcy is too much for my body, and it somehow feels more relaxed when hypo, brain fogged and depressed .
But the first time i ate liver, and took pregnenolone, everything ran smoothly and i didn't feel this overload and tension, had tons of energy which felt inexhaustible, and great mood.

Codeine painkillers can also make me more or less normal, interestingly. So maybe it's glutamate? But l-theanine did't give me my energy back, despite the relaxation, so it can't be the whole story...

And oh, I'm a normal-temperature cfs-er (36,9 to 37,2 C, sometimes a little higher), temp gets higher after eating so not stress hormones. I've been lurking the forum for some years and seen disscussions that cfs is just hypothyroidsm, not in my case (unfortunately).
 
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freyasam

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Joined
Mar 21, 2014
Messages
619
Eating liver after what i suspect was years of vitamin A deficiency gave me a complete remission of CFS on the next day. Unfortunately it only lasted for one day. Same thing happenend when i tried pregnenolone for the first time, only with vitamin a it was much more dramatic. They both still give me a little more energy, better temps and mood and improved vision. Only i can't tolerate doses as high as 10.000 iu of A, because the sensory heightening it gives me seems to be somehow overstimulating to my brain, which is sad, because besides that everything gets better on this higher dose. Vitamin d in higher doses, besides feeling like pregnenolone and removing depression, was frying my brain the same way, although it seems better now (have low levels and need to get them up).
Hi, are you still around? Would love to hear an update. I have ME/CFS 14 years now. I notice pregnenolone helps depression and eyesight, maybe high D is not helping. Not sure about A; the anti-A theory has me scared to try. But I used to eat liver 2x month or more and never helped. Please update if u can.
 

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