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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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My gigantic story going back to 1996, please read this, treatment plan included!

Messages
44
Just updating this post.

I removed Potassium as mine was high, and increased my Thorne Magnesium CitraMate to two capsules a day. That change seemed to finally get my head twitches under control for the most part.

I've finally reached the point where I can sleep when tired, when I want to. Like today, I still struggle with some gastric discomfort at night, but it's moving, which is good. This means that I often wake up around 8am, and finally evacuate what's left, and then feel great. In the past, going back to sleep at 8am was basically impossible. I'm now finding myself comfortable enough in my own body, pain is low, anxiousness is low, to where I can fall back asleep on demand basically. I haven't experienced that in MANY years. When I'm able to get this extra uninterrupted sleep, I often wake up feeling really great, like my brain will be even sharper due to getting the deep sleep it needed.

There is still a mitochondrial dysfunction going on though, that seems to be resolving with treatment, but still follows a cycle. My body won't absorb water and I think nutrients, when this is going on, so I have to kind of read the cycles. It seems to be getting better, and my gastric stuff is better every night. I think I had massive gut and intestinal dysfunction that is taking a while to fix. Each day it's more and more formed poop, less painful movement through my insides, etc.

Still 100% confident this is the path for me, and likely many of you all.
 

Daffodil

Senior Member
Messages
5,875
Just updating this post.

I removed Potassium as mine was high, and increased my Thorne Magnesium CitraMate to two capsules a day. That change seemed to finally get my head twitches under control for the most part.

I've finally reached the point where I can sleep when tired, when I want to. Like today, I still struggle with some gastric discomfort at night, but it's moving, which is good. This means that I often wake up around 8am, and finally evacuate what's left, and then feel great. In the past, going back to sleep at 8am was basically impossible. I'm now finding myself comfortable enough in my own body, pain is low, anxiousness is low, to where I can fall back asleep on demand basically. I haven't experienced that in MANY years. When I'm able to get this extra uninterrupted sleep, I often wake up feeling really great, like my brain will be even sharper due to getting the deep sleep it needed.

There is still a mitochondrial dysfunction going on though, that seems to be resolving with treatment, but still follows a cycle. My body won't absorb water and I think nutrients, when this is going on, so I have to kind of read the cycles. It seems to be getting better, and my gastric stuff is better every night. I think I had massive gut and intestinal dysfunction that is taking a while to fix. Each day it's more and more formed poop, less painful movement through my insides, etc.

Still 100% confident this is the path for me, and likely many of you all.
since some studies imply that FMT does not work as well if you have fungal overgrowth, and since you were on powerful antibiotics for so long, could it be that you have fungal overgrowth? i have heard some anecdotal reports about kids with autism not improving much with FMT until they first treat fungus. there is a doctor satish rao in georgia who apparently tests the small bowel for fungus via aspirate which i guess is the only reliable way...