mitochondrial disease

[Guest guest]

Jim,

Thanks for responding to my mito diagnosis. Since I'll be leaving the

list in about a week please feel free to e-mail me directly. I'd like to

keep in touch with other CFS/mito people.

Are you taking perscription Carnitine/Carnitor? Did it help??? I am

about to start it.

I consider myself as having both diagnosises: CFS & mito. My case of CFS

obviously involves metabolic problems in the mitochondria. It doesn't

fit into one of the well-known Mito disease classifications though so my

guess is for now I have CFS with a mito involvement which, down the

road, will be a new named mito disease....though of course that assumes

there is no active virus going on...if there is then it would eventually

be named for the virus and mito involvement would be secondary. It's

still all a great mystery.

What was important to me about going through the mito testing was that

now I have a doctor who 1) knows specificaly wants wrong in the

metabolic pathways and can treat accordingly (instead of the russian

roulette of trying things) 2) can tell me what to NOT take (Xanax and

Klonopin made me very very very severely sick and bedridden, standard

CFS drugs for sleep). Many drugs are very contraindicated with mito

problems and now I have someone who knows exactly which ones. 3) I can

follow the specific research in my metabolic situation which again is

more specific than some of the CFS treatments.

Also research on Mito is about to increase dramatically....for instance

your muscle biopsy of 10 years ago would now have told them much much

much more if it was redone now. They are using incredibily high-tech

procedures now to look at each part of the metabolic process. In about a

year there is supposed to be a blood test available for diagnosis and

then it should get really interesting as many more people will be able

to get tested....the more mito diagnosis that start happening the more

research will increase.

When I get a full written diagnosis treatment plan I will post that. It

may be another month or so before I have this. best, Beth