Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Yes, interesting, Jim. Interesting observations you made Barbara. Jim, in the link you provided there is another link where Idebenone can be purchased. I don't know if you saw that. If not, I will find it again. Looked at it very briefly this morning. I have been interested in Idebenone. Keep us posted, please. > > 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...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 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 > > 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...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 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 > > > > > 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...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Sunny I will have to go look in my materials to be sure, but I thought the Idebenone was to be a prescription drug. I'll see if I can find time tomorrow to look in my " stuff " . I may end up sleeping most of the day, since I didn't get to sleep extra over the holidays and have had my wheelchair only at school, since my van is back in for repairs. I haven't slept much as I have had a massive number of cramps and muscle spasms. laurie > From: z39z@... > Reply-To: > Date: Fri, 3 Dec 2004 19:34:33 -0500 > To: > Subject: Re: Re: Idebenone > > > 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 >> >>> >>> 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...
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