Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 What does your doc recommend for your son, may I ask? is doing better on coenzyme q10, biotin, b1, b2, c, e, and creatine. Carnitine seems to make her too tremory, so I don't have success with that, and lipoic acid can burn her throat if I crush it - so I tried gel caps, but stopped because she has reflux. I'm just looking for anything else that may help... , , 7 's story http://expage.com/page/rettbook ---------- > >To: Mitoonelist >Subject: Re: NADH >Date: Mon, Jan 24, 2000, 5:50 PM > > > > , > > We never tried it but I did ask my son's metabolic doc about it. His > comment was that it probably wouldn't hurt but that it wouldn't get to where > it needs to go on a cellular level so wouldn't actually do anything to bring > up complex I function. I also emailed the manufacturer (Enada) about his > comment and they agreed that there was no evidence to suggest that it would > be helpful in mitochondrial disorders where there is a complex I deficiency. > But - that may be only because it was never actually studied. > > Terri > > >> >>Reply-To: Mitoonelist >>To: Mitoonelist, Mitoonelist >>Subject: NADH >>Date: Mon, 24 Jan 2000 17:12:52 -0500 >> >>Has anyone tried/had succes with NADH for mito issues? >> >>mary > > ______________________________________________________ > Get Your Private, Free Email at http://www.hotmail.com > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 I don't know if anybody is using it but I'll share with you what my son's metabolic doctor said about it. Basically what he said is that if the NADH would get to where it needed to go (the mitochondria), then it would probably be beneficial. However, the extra NADH doesn't necessarily get it into the mitochondrion, just the body. Those with a Complex I deficiency don't need more Complex I for the sake of having more Complex I in the body - they need it so that it can be utilized in the mitochondrial respiratory chain to actually produce ATP. So, if it doesn't get to the mitochondria so that it can be utilized in the respiratory chain, it *shouldn't* necessarily help those with a Complex I deficiency. But he also said that it probably wouldn't hurt either. I did also contact the company (about a year ago) who is producing NADH (Enada) and they said that they have done no studies and that there is no proof that it would be beneficial to those with mitochondrial disorders, but they still thought it might help. Now that said, who knows! We never tried it, but it would definitely be interesting to hear if anybody actually tried and saw any benefits. Terri > >Reply-To: Mitoegroups >To: Mitoegroups, Mitoegroups >Subject: nadh >Date: Tue, 04 Apr 2000 12:49:31 -0400 > >Is anyone on this list using NADH for mitochondrial conditions? > >Thanks, > > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 In a message dated 4/4/00 9:53:29 AM Pacific Daylight Time, ceid@... writes: << Is anyone on this list using NADH for mitochondrial conditions? >> gee I don't even know what it is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 Is anyone on this list using NADH for mitochondrial conditions? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 My daughter has rett, and mitochondrial implications in her blood/urine, and the NADH definitely helped with fatigue and breathing.... There is some literature out on Parkison use, and chronic fatigue use - showing improvement in some cases, above placebo levels. Well, I'm using it for now. We are in contact with a mito specialist who knows of isolated reports that it helps some with mito probs, but nothing in publication (that I can find). Still, I will keep amanda on it for now. Join the Rett Syndrome email list in your state and meet the locals! http://expage.com/page/rettemailstates ---------- > >To: Mitoegroups >Subject: Re: nadh >Date: Tue, Apr 4, 2000, 1:02 PM > > I don't know if anybody is using it but I'll share with you what my son's > metabolic doctor said about it. Basically what he said is that if the NADH > would get to where it needed to go (the mitochondria), then it would > probably be beneficial. However, the extra NADH doesn't necessarily get it > into the mitochondrion, just the body. Those with a Complex I deficiency > don't need more Complex I for the sake of having more Complex I in the body > - they need it so that it can be utilized in the mitochondrial respiratory > chain to actually produce ATP. So, if it doesn't get to the mitochondria so > that it can be utilized in the respiratory chain, it *shouldn't* necessarily > help those with a Complex I deficiency. But he also said that it probably > wouldn't hurt either. > > I did also contact the company (about a year ago) who is producing NADH > (Enada) and they said that they have done no studies and that there is no > proof that it would be beneficial to those with mitochondrial disorders, but > they still thought it might help. > > Now that said, who knows! We never tried it, but it would definitely be > interesting to hear if anybody actually tried and saw any benefits. > > Terri > > >> >>Reply-To: Mitoegroups >>To: Mitoegroups, Mitoegroups >>Subject: nadh >>Date: Tue, 04 Apr 2000 12:49:31 -0400 >> >>Is anyone on this list using NADH for mitochondrial conditions? >> >>Thanks, >> >> >> > > ______________________________________________________ > Get Your Private, Free Email at http://www.hotmail.com > > > ------------------------------------------------------------------------ > LOW RATE, NO WAIT! > Get a NextCard Visa, in 30 seconds! Get rates > as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2122/1/_/368657/_/954867729/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those > affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 In a message dated 04/04/2000 6:14:14 PM Eastern Daylight Time, ceid@... writes: > There is some literature out on Parkison use, and chronic fatigue use - > showing improvement in some cases, above placebo levels. > Interesting . . . I read an article on Parkinson's recently and it said that Complex I deficiencies (acquired, I assume) are associated with Parkinson's. Very interesting . . . Might have to give it a try. Kathy C. mom to , and Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 We tried on it for about 5 months. We had some problems with the shipment when we reordered (they did not include the NADH), so we ran out. We could not tell any difference so have not retried it at this time. We might at some point but since we did not see a change when discontinued it, have decided for now not to use it. (, 12, Complex I) In a message dated Tue, 4 Apr 2000 12:53:41 PM Eastern Daylight Time, " mary potter " writes: > Is anyone on this list using NADH for mitochondrial conditions? > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Could you tell me dosage and where you were buying it? Seems to help amanda, and frankly, I find it is very expensive. ---------- >From: KnoxVolNut@... >To: Mitoegroups >Subject: Re: nadh >Date: Thu, Apr 6, 2000, 11:34 AM > > We tried on it for about 5 months. We had some problems with the > shipment when we reordered (they did not include the NADH), so we ran out. > We could not tell any difference so have not retried it at this time. We > might at some point but since we did not see a change when > discontinued it, have decided for now not to use it. > > > (, 12, Complex I) > > > In a message dated Tue, 4 Apr 2000 12:53:41 PM Eastern Daylight Time, " mary > potter " writes: > >> Is anyone on this list using NADH for mitochondrial conditions? >> >> Thanks, >> >> > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/1/_/368657/_/955035273/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those > affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Could someone tell me how NADH helps their child? What improvements can you say you saw since you started NADH? Thank you Quote Link to comment Share on other sites More sharing options...
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