Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Please no emiaL UNTIL MY COMPUTER IS FIXED. THANKSsUSAN z39z@... wrote: Laurie, Was there talk of clinical trials for Idebenone? I just thought it was in the category of a supplement. Sunny > Barbara > > At the last conference there was mention of Idebenone as the > preferred way > of getting the CoQ10. I didn't know it was out of clinical trials and > FDA > approved. If this is the case, then I will check with Dr. Cohen next > time I > see him and ask my MDA neuro about it. > > laurie > > > From: " wheatchild2 " > > Reply-To: > > Date: Fri, 03 Dec 2004 19:40:49 -0000 > > To: > > Subject: Re: Idebenone > > > > > > Jim, > > > > Interesting post. I understand that Idebenone has been used much > > more in Europe than in the US. European physicians who treat mito > > certainly have more clinical experience with Idebenone than US mito > > experts. A few years ago Idebenone was not even available in the US > > and I found no US based internet outlets selling it. Apparently this > > has changed. > > > > Interesting, too, that all but one of the references cited on the > > link you provided are based on studies outside the US, which again > > is consistent with the lack of clinical use and availability of > > Idebenone in the US. I'm not sure what the leading mito experts in > > the US currently think of Idebenone, but I do know that Dr. Naviaux > > included it in his list of possible treatments for mito. Maybe those > > who see Drs Cohen, Shoffner, Haas, Korson, etc can tell us more > > about how the US mito experts currently view Idebenone. Laurie, > > , RH, , , Malissa? > > > > Take care, > > Barbara > > > > > >> > >> Hello all: > >> > >> I havn't posted in awhile. I was just wondering if anyone is aware > > or > >> if they take Idebenon. It's a CoQ10 analog - a synthetic version > > of > >> CoQ10. My 18 year old son, who has mitochondrial disorder, has > > been > >> taking 400mg daily of Sam's Club brand CoQ10 and he has always had > >> difficulty sleeping - chronic fatigue. Usually he stays up all > > night > >> and goes to sleep during the day. His doctor, Dr Ambrus, said > > that > >> some of his patients tolerate this Idebenon better and allows them > > to > >> sleep. My son is to take 2 doses at 45mg per day. > >> > >> Any feedback is appreciated - also if you can recommend a place to > >> buy on line or in the Western New York area. Here is a link to > > some > >> information on Idebenon: > >> > >> http://www.smart-drugs.net/South-idebenone.htm > >> > >> Thanks > >> jim > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained herein > > are not necessarily those of the list moderators. The author of > this e mail is > > entirely responsible for its content. List members are reminded of > their > > responsibility to evaluate the content of the postings and consult > with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends > one is > > automatically moderated or removed depending on the severity of the > attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.