Re: mito cocktail - (reply)

[Guest guest]

Honestly, I just don't know. I just took Dr. Cohens word for it that she was deficient in both CoQ10 and Carnitine. I'm sure I have the levels somewhere in a file somewhere, we are in such close contact with her doctors that it is very easy for them to retrieve them when needed. He did say that she was very low for Carnitine. Actually she had a temporary diagnosis of primary carnitine defficency, until the muscle biopsy confirmed mito. I don't think she is as severely low in Co Q10, but Dr. Cohen did say she was lower than he would of expected. We do not ever try stopping the medicine for new levels, but check them every 6 months to check if the dosages are correct. We will never take her off the Carnitor, even to try, since she had severe liver disease wich cleared up within 1 year of starting the Carnitor. Dr. Cohen strongly believes the Carnitor is helping her liver, so it is just not worth the risk. Her liver has been permanatly damaged from before so we cannot let the cycle begin again.

FWIW her current doses are 700mg daily of Carnitor and 200mg daily of CoQ10. She is 2 years old and about 30 pounds.

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[Guest guest]

Honestly, I just don't know. I just took Dr. Cohens word for it that she was deficient in both CoQ10 and Carnitine. I'm sure I have the levels somewhere in a file somewhere, we are in such close contact with her doctors that it is very easy for them to retrieve them when needed. He did say that she was very low for Carnitine. Actually she had a temporary diagnosis of primary carnitine defficency, until the muscle biopsy confirmed mito. I don't think she is as severely low in Co Q10, but Dr. Cohen did say she was lower than he would of expected. We do not ever try stopping the medicine for new levels, but check them every 6 months to check if the dosages are correct. We will never take her off the Carnitor, even to try, since she had severe liver disease wich cleared up within 1 year of starting the Carnitor. Dr. Cohen strongly believes the Carnitor is helping her liver, so it is just not worth the risk. Her liver has been permanatly damaged from before so we cannot let the cycle begin again.

FWIW her current doses are 700mg daily of Carnitor and 200mg daily of CoQ10. She is 2 years old and about 30 pounds.

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[Guest guest]

> Thank you for the info. If you get an opportunity to get the

readings I would be interested in what they were before treatment and

what they were at various doses. I am interested in the response

level and how low they were initially.

Thank you and the best to you.

[Guest guest]

> Thank you for the info. If you get an opportunity to get the

readings I would be interested in what they were before treatment and

what they were at various doses. I am interested in the response

level and how low they were initially.

Thank you and the best to you.