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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Night 15

Slept a lot better last night. Sore throats much better but still a tad hoarse. Fatigue is much better as well. No night sweats apart from very briefly which may have been me over heating. Still taking melatonin and 1000mg 5-htp before bed. This really calms me down so I can sleep.

Even though I do feel pretty wired. Would like to know if anyone else feels wired on this protocol. I think if I can sleep enough every night then maybe I might see some long term improvements.

Still waiting to see how I feel once I hit Thursday.

Interestingly if I don't have any success with this considering how sound the science is. I wonder if I might have some other disease entirely. That or PEM is just caused by a pathway other than gdh in my case. I'll see how the next week or so goes.

Possible things to note (changes over the last few days directly related to egcg dosing):
  1. More energy in the mornings to get up and go (assuming no PEM/fatigue)
  2. Mental clarity on Day 14 was excellent, I got loads done at work and was able to keep up all day long, it was a very very productive day and I retained most of the information.
  3. No exertion or exercise yesterday (I may start graded exercise to see if I can tolerate it)
  4. Mood is really good at the moment, feel rather upbeat. But this might just be because I am a bit hyper from the whey protein and b vitamins.
  5. Sweat glands producing more under arm sweat (I smell like I used to pre-ME).
  6. Feel more get up and go in the morning (This is more of a psychological thing but I was always able to get up in the mornings pre-ME and get "on" so to speak). This could also be due to the protein increase overall.
But as I still crash and still suffer from PEM, plus I am still mildly dizzy with balance issues when I stand sometimes (Not OI just feel dizzy but effects balance) I would want these symptoms all be gone before declaring this a success in terms of a cure/treatment. It would also be nice if my body calmed down a bit, as it does feel over strung slightly, although might be able to accomplish this at a future date by lowering the egcg slightly or the protein dose.

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godlovesatrier
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