Guest guest Posted January 2, 2003 Report Share Posted 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) Quote Link to comment Share on other sites More sharing options...
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