Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 wow Alice, this is great news. I have followed your posts describing your fatigue and on going problems for the last few months, and am so happy to hear that you are finally getting some relief, and have more energy. I have been in a major crash since Oct.2003. Someone might ask How can that be? Well, I have never been in a crash that long, but it is possible, and I did it, and I am still in it. I have been sleeping for 18 to 20 hours a day. Getting up once and trying to eat a little something, and back to bed. Sometimes I can check my email and other times not. I went to my Doctors appts. and nothing they recommended worked or even slighly helped. Some didn't have any recommendations at all. I lost over 20 lbs in 7 months, there was talk about a gtube, but MDA Doctor says lets wait, until when? I am now down to 80lbs I have always been a good eater, and yes it was hard to maintain my weight of 105lbs. but I did so. I remember you sending that post to the list, but really didn't give it much thought and deleted it. Could you please send the list the website or the information you have on it, I would like to review it and decide for myself if it would be a good thing for me. And yes, I understand that we shouldn't be taking things without our docs advice or knowledge, but at times we have to take the *Bull by the Horns* and take care of ourselves when our docs seem to be stuck as to what to do next for us. I can't believe you were able to do that much work today and in that kind of heat. Now when you do this kind of work will you normally go into a crash in a fews days? Have you done this kind of work like you did today since you have been on the NT Factor and crashed a few days later? I know that different products don't work the same for all of us, and I will certainly take that into consideration when I make my decision, and I hope everyone else who decides to try this also realises that it will be different with each and every one of us. Thank you for your very informative post and I am so glad that you have found something that is helping you to enjoy life again.!! :-) Ann-Marie Re: reaction to COQ10 RH brought up NADH. I have not tried this but I am taking NT Factor which was not recommended by any physician but introduced to me thru a private message to me as listowner of Mitoldies. I have been on it 4 weeks now and the results are amazing. I have found that I have more energy and endurance than I have had in a very long time. You all know how sick I was and when I received the owner message about NT Factor, I was very skeptical but out of desperation, I decided to try it. I can't even begin to tell you what a difference it has made for me. I have told others, including family members about this product and they have tried it. Out of 7 people who are now taking it, 5 are all sharing my very surprising results. One of the two who didn't share my results had an increase of Mito symptoms and the other had a problem with heart racing. This just goes to show how we are so different and what one of us can take can work wonders while others have a totally different reaction. I cannot take the CoQ made by Tischon. If it ever gets approved as a drug, I still won't be able to take it. I can't take straight Niacin. It's a very serious problem for me. But I can sure take NT Factor and I intend to continue to do so, even without the doctor's approval. It has made my life much easier to live, given me the ability to cope with what I cannot change and has me out of the recliner and up and about doing things I haven't been able to do for months. Today, I cut shrubs, cleared them and bagged the results of my work to go to the dump. I can't believe I could do this in 90 degree heat but I did, came in and drank water and then came to the computer which is something else I had just about given up. This is not an advertisement for the product. I just felt I needed to share this with the group since we are on the subject of different methods of combating the effects of the disease so that life is more livable. There is no cure so finding something that helps is about all we can do. I am not recommending that anyone else do what I have done. It really isn't a good idea to take something without the doctor's recommendation but for me, I'd gone months to so many appointments and nothing they recommended was helping. Suddenly, after taking a chance, this is making a huge difference in my life and some others that I know and the change is noticeable within 48 hours. Alice > , > I would stop the CoQ10 and ask your doctor about it. Not > everyone can take CoQ10. I have problems with that and Carnitor. > They > seem to make me worse. Yes, both CoQ10 and Carnitor make me worse as well. NADH works well for me. Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 > And yes, I understand that we shouldn't be taking things without > our docs advice or knowledge, but at times we have to take the >*Bull by the Horns* and take care of ourselves when our docs seem to > be stuck as to what to do next for us. NADH is on the mito cocktail list, and my MDA clinic doctor, who knows a good bit about mito disorders, says " try things on the mito cocktail list, if it works, use it. If it doesn't, try something else. " So NADH was something I wanted to try, after taking CoQ10 and carnitine (and Carnitor), and not having any luck. So I did have clearance to try anything on the mito cocktail list. BUT, the big problem is that the supplement industry is not standardized, so as you can see on our discussions about CoQ10, QGel, Carnitor, carnitine, etc., what you see may not be what you get, or if I try NADH, and it works, it may not work for you if, say, you run and get the CVS brand of NADH. So, although I hate mentioning brand names, it seems that often it is necessary to be clear and consistent. Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Yes.. I asked Dr Cohen about NAHD and he said that Dr Shoffner is recommending it but Dr Cohen admitted that he didn't know anything about it. He said to go ahead and try it if I wanted to. I looked it up and what I found was a high concentration of Niacin which is a huge No No for me so I turned away from trying it. NT has niacin too but not much and it hasn't seemed to bother me - at least not yet. I am sure that what will work for some won't work for others. I'm glad that some are finding that NAHD is helpful to them. Alice Re: Alice's Results with NT Factor > And yes, I understand that we shouldn't be taking things without > our docs advice or knowledge, but at times we have to take the >*Bull by the Horns* and take care of ourselves when our docs seem to > be stuck as to what to do next for us. NADH is on the mito cocktail list, and my MDA clinic doctor, who knows a good bit about mito disorders, says " try things on the mito cocktail list, if it works, use it. If it doesn't, try something else. " So NADH was something I wanted to try, after taking CoQ10 and carnitine (and Carnitor), and not having any luck. So I did have clearance to try anything on the mito cocktail list. BUT, the big problem is that the supplement industry is not standardized, so as you can see on our discussions about CoQ10, QGel, Carnitor, carnitine, etc., what you see may not be what you get, or if I try NADH, and it works, it may not work for you if, say, you run and get the CVS brand of NADH. So, although I hate mentioning brand names, it seems that often it is necessary to be clear and consistent. Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 I'm pretty sure it is not the same as niacin, but related. It is only one compound: nicotinamide adenine dinucleotide Niacin is Vitamin B3, nicotinic acid. Although the names sound similar, they are different enough that the body handles them differently. I know that ENADAlert NADH only has NADH in it, no niacin. Perhaps you were looking at a different NADH formulation that has niacin in it? This link discusses NADH and CFS: http://64.233.161.104/search?q=cache:- yyUHBqsqpQJ:www.vorsoft.com/medical/niacin/cfs.htm+niacin+nadh&hl=en&c lient=REAL-tb What it seems is that niacin *should* go towards making NADH, but some people can't take niacin. So taking NADH should " cut out the middle man " . Niacin gives me side effects too, and gave my dad really bad skin. My understanding of one of the NT factor cons is that it is contained in a " package " - with other compounds. Do you know the NT factor is the key nutrient, or are the other things helping you? Maybe I'm confused, is it available as a separate nutrient? Take care, RH > Yes.. I asked Dr Cohen about NAHD and he said that Dr Shoffner is recommending it but Dr Cohen admitted that he didn't know anything about it. He said to go ahead and try it if I wanted to. I looked it up and what I found was a high concentration of Niacin which is a huge No No for me so I turned away from trying it. NT has niacin too but not much and it hasn't seemed to bother me - at least not yet. > > I am sure that what will work for some won't work for others. I'm glad that some are finding that NAHD is helpful to them. > > Alice > Re: Alice's Results with NT Factor > > > > And yes, I understand that we shouldn't be taking things without > > our docs advice or knowledge, but at times we have to take the > >*Bull by the Horns* and take care of ourselves when our docs seem to > > be stuck as to what to do next for us. > > NADH is on the mito cocktail list, and my MDA clinic doctor, who > knows a good bit about mito disorders, says " try things on the mito > cocktail list, if it works, use it. If it doesn't, try something > else. " So NADH was something I wanted to try, after taking CoQ10 and > carnitine (and Carnitor), and not having any luck. > > So I did have clearance to try anything on the mito cocktail list. > > BUT, the big problem is that the supplement industry is not > standardized, so as you can see on our discussions about CoQ10, QGel, > Carnitor, carnitine, etc., what you see may not be what you get, or > if I try NADH, and it works, it may not work for you if, say, you run > and get the CVS brand of NADH. So, although I hate mentioning brand > names, it seems that often it is necessary to be clear and consistent. > > Take care, > RH > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 This was my question exactly, but we did find that NT factor is available as a separate product, though the products that are most readily available on the web are combos--vitamin supplements that use NT factor as a base. If you go to www.ntfactor.com, there are links to other sites or a company number to call. Retail is listed as $48 for 90 tablets. It is my understanding that the " key " ingredient is phosphoglycolipids. Most other ingredients (present in small to tiny amounts) are co-factors necessary for uptake and metabolism of the phosphoglycolipids. For more, see http://www.drhoffman.com/page.cfm/332 Barbara > My understanding of one of the NT factor cons is that it is contained > in a " package " - with other compounds. Do you know the NT factor is > the key nutrient, or are the other things helping you? Maybe I'm > confused, is it available as a separate nutrient? > > Take care, > RH > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Congratulations Alice.... I am so happy for you' Quote Link to comment Share on other sites More sharing options...
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