This is a topic I return to over and over.
Every patient I know of who was tested and/or treated for mitochondrial disorders (I was treated), had a negative test, and little or no result from treatment.
Are there any exceptions out there? I can't be the only one who is looking for people who HAVE responded...
It makes sense to me, not just the science, but how it translates to how we FEEL. Especially when we hit that "wall", usually mid-afternoon for me, when I can't even think. Exhaustion takes over. I can have caffeine, sugar and even Provigil -- no effect.
Cece, you mentioned how the article said not to 'fast'. I agree, and I've been hesitant to say this for a long time, because it flies in the face of most everything we are working on with our diets. But here it is --
I do better (and I know others like me), who do better on a HIGH FAT diet. I know, sounds crazy. I'm not sure if it keeps the blood sugar steadier, or if it is more involved than that. Our brains are 60% fat (and fast is a big part of myelin), and we treat epilepsy with a VERY high fat diet ("ketogenic diets"). It is extremely effective.
I went on Axona to try to mimic the ketogenic diet, but within 12 hours, I was too acidic for my Diamox (takes pressure off of my brain) to work. But it gives the brain an alternative source of fuel (ketones) if we are unable to utilize glucose as well.
If someone is not taking Diamox, I'd highly recommend trying high fat (I stayed with the "healthier" fats, usually), and some Axona (my neurologist gave me samples). Axona is currently being tried for early Alzheimer's. Of course, you want to bring your doctor in on this with you, <disclaimer> as I can't practice medicine without a license over the internet without having seen you. But in the interest in sharing ideas that may or may not be helpful, I wanted you all to know...
OH-- this is also a HUGE reason why I have TONS of Fish Oil capsules (the fancy-pants ones that doctors take. ha). Lots of good fat there. BTY, my cholesterol is fine, and I'm a bit thin (no worries on those aspects).
If you try this, would you kindly let me know? I'm in a mood to do some more studies.
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea