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Old 01-26-2009, 04:57 PM
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olsen olsen is offline
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Join Date: Aug 2006
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15 yr Member
olsen olsen is offline
Senior Member
olsen's Avatar
 
Join Date: Aug 2006
Posts: 1,860
15 yr Member
Default coq10 clinical trials

there probably is no way now to effectively obtain the info re:use of coq10 without benefit of clinical trials . Too much reliance on memory (ie what were the symptoms before starting the supplement? how were these affected? what are they now? etc.) coupled with the polypharmacy most PD patients are on--how to separate out what is responsible for what. I remember when my husband first began taking 1200 mg coQ10/day, he spoke with Clifford Shults MD (who is now deceased), the first author of the original study on mega dose CoQ10 in PD patients and asked about dosage, preparation and lab testing to determine efficacy. Shults was furious that my husband was taking the supplement on his own--ie without aegis of a clinical trial. commented that if all PD patients did that there would not be enough for a clinical trial. I do understand this concept, though, that conversation took place in Aug, 2004. It is now Jan, 2009, and the trial has not even recruited participants. Thus far seems there are no adverse effects from taking coq10--and we are hopeful at least some of the muscle tissue,plasma and platelet CoQ10 levels depleted by statins have been normalized after 4 1/2 yrs. of suupplement therapy.
We were told by an acquaintance who is a pharmacist that Sam's coQ10 preparation was "soluble enough". I do know the preparation used in the original study was developed by "vitaline formulary" (they had a booth at the world parkinson's conference in wash a couple yrs ago and advertised that fact). Individuals who belong to the one of the mitochondrial dysfunction groups, I think it is the United Mitochondrial Disease Foundation, have a "group buying rate", thus receiving a discount from Vitaline Forumlary, negotiated by several members of this group. No reason we could not band together as the "neurotalk communitites Parkinson's Group" and negotiate our own group rate. Or one could join UMDF--mitochondrial dysfunction is thought to be an underlying cause in Parkinson's disease--thus would qualify for the discount.
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