Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 --- Hi Anita, Thank you. So nice to " meet " you also. My biobsy was muscle and although there are aggregates suggesting a muscular disease the mito testing came back negative. It was sent mostly for respitory chain diagnosis since that is what my daughter has. It was dissapointing. Dr. Enns at Stanford had said he will treat me weather it is positive or negative before I had it done since he is so sure I have mito. On to PDH, I have always been very athletic and even now when I cannot play sports I have more muscle than many. I do not look sick except when I really crash, my strength is good but endurance is very low and my heart races at the drop of a hat, literally if I am tired, I have developed a startle response that sends me into tachecardia. My B-12 and B-2 levels are the only ones we have tested and they are low despite supplimentation, down to B-12 injections with a very pure form of B-12 we ordered from a pharmecy in Georgia, I developed huge welts when trying to take the injections. This week we are testing levels of all the B vitamins. My co-Q 10 levels are at the low end of normal even with supplimentation so am increasing this. I have not had orotic acid drawn. I do have constipation with intermittent diahrrea. The big one is the complete intolerance of carbs, I have not been able to figure this out until reading your post. I have been on a gluten free diet for many years but now it seems all carbs and anything with additives will do this to me. I swell up , especially my hands and feet, which also turn red and become hot,Iget clumsy, extremely tired (better than any sleeping pill), groggy, brain fog, constipation and neuropathy worsens, bladder control problems, myocolonus worsens. I would love the protocol you have if you get permission, my neuro does confir with many mito specialist so would give him a call also I would think. She often call Dr Enns at Stanford, Dr. Shoffner in Georgia, Dr Haas in San Diego and Dr. DiMauro in NY so I think she would check things out with him, it would be another place for us to look into that we have been unaware of. How much success have you had in trying the protocol. Any symptoms alleviated? I really appreciate your time. Hope you are feeling well. Anne Quote Link to comment Share on other sites More sharing options...
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