RE: mito cocktail

January 2, 2003

Hi , Welcome to this list! You will find much support here! I know I

have!

As for the cocktail, that tends to be an individual thing. Although there are

suggested supplements for mito. There is a section at the United

Mitochondrial Disease Foundation website www.umdf.org (sorry-don't know

how to create a link), that has a table of suggested supplements for mito.

Talk with your dr about anything you want to try.

My daughter, Chelsea, is nearly 6 and severely neurologically affected by

mito. She is on a whole list of supplements, some for mito, and some because

she is on a restricted calorie diet. Her neuro put her on Carnitore

(L-carnitine) after he was nearly sure she had mito. Prior labs showed no

deficiency, but her " free " carnitine levels were on the low side. He stated

the benefits of Canitore were " empirical " , meaning in theory it would help,

but it was a toss up if it would cause improvement or not. Chelsea also

started phenobarb shortly after the carnitine and suffered a serious

regression, so no dramatic improvement was seen right away. Instead, we have

observed small improvements with each of the supplements that have been

addded to her diet.

I would suggest you research the supplements you are interested in. There is

great info on the net, your library and elsewhere. I did a lot of researching

on my own and then went to her drs. I had not even heard of CoQ10, until I

started searching the net and found lots of great info. I then talked to her

neuro about it, because he had not brought it up. He approved Chelsea going

on CoQ10, even though he felt no improvement would be seen, he has been this

way with other supplements as well. Most drs are more comfortable with meds

than supplements, so you do have to do youe owm searching.

I hope you find help that you need! Good luck and please feel free to ask

anything!

e, Chelsea's mom(nonspecific mito)

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