Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 Spy!!!!! YEA!!!!! I've been out of town but I just opened your email . . . I'm SO excited for you!! I know what you mean by saying that you are afraid to admit it. I did the same thing and so did my Mom (Sgrkane/Candy). I guess we are going to go out dancing when I get to Dallas after all!! Congrats!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 Spy, this is fantastic! It's so cool that this is actually helping us! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 YEA!!!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Way to go !!!!!!!!!!!!!!! Keep popping that Vitamin C. Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Way to go, . I am happy to hear that you are showing such positive results. Hopefully your results will be a preview of what is to come for all the other ers who are trying the Vit. C regimen. Again congrats on the positivity, hope that it continues for you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi , Do you think you will try the vitamin C in large enough doses to help your CMT? They gave the mice what would be equal to 10,000 miligrams for an adult male. I was just wondering how many of us it may help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 , The article on the Vitmain C research in in the files section of this group says, " The mice received 1.12 mg of ascorbic acid. This is considered a large dose for a mouse; however, this corresponds to a human dose of 4 grams for a 70 kilogram male " . Is there another source which says, as you wrote, that the dosage given to the mice equals 10,000 milligrams rather than 4 grams (4,000 milligrams)for an adult male. Or am I missing something? Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 Matt, I agree with you that proceeding from the numbers given in the French study, the Vitamin C dosages some people in the group report taking seem high. In searching for a dosage for my son (who has CMT 1A), I've gradually increased the dosage but am still nowhere near the levels some people have reported. It bears emphasizing that mice metabolism differs from that of humans (mice can store Vitamin C, I believe) and so effective mice dosages may not correlate well with human dosages. Given the variability of CMT, even within a family, it seems to me that the appropriate dosage may vary widely from one person to the next. I therefore have two hopes for clinical trials: first, that they show efficacy of the treatment, and second, that they produce good guidance on proper dosing for children and adults. Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 > My question is should I use sustained release, buffered > or just regular Vitamin C? > > Ben NYC I use a little of both. I like knowing that the regular release is working right away. I like have the security of the time release too. So I take 1/2 time release and 1/2 regular. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Thanks , It never would have occurred to me to use both. I think it makes alot of sense. Ben Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi , I take 4000 miligrams in the morning 3000 at noon and 3000 at night. I am having good results and so are my children. Adam and both went roller skating on Friday with the school. Adam skated with his AFOs on. used her own roller blades. I worried about them all day but turns out they both had a great time. Adam said they wern't the best skaters but they had a lot of fun. Adam has never been able to skate. He must have enough strength back to at least have fun. He has been asking me to take him skating again. I love these 2 inches on my calves. LOL Oh you know what else I used to be very sensitive when someone touched my legs. It would hurt like they had poked me pretty hard. That is gone now. I know this because my son tried to get me to say ouch today and it didn't hurt. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 How much vit c are you giving to your kids? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Dave, First to answer your question - I have several news info. sites I scan to see if there's anything that might pertain or be of interest or relate for us. Periodically I check on several biotechs doing neuro research too. In other words " I have my sources " lol I can't really recommend a certain type of Vit. C. or even Vitamin C period. But. here's my experience: I didn't start taking C as recently as others. 2 years ago I was prescribed Black Strap Iron tablets, 2 a day, which have 6g of Vitamin C in them. Now I just take 1 a day. Also, remember, I've been taking E for about 7 years or so. Anyway, about a month after I'd been taking the Iron and C 'blend', I checked in with the Internist and I remember saying " I've never felt this good " - it was a general feeling of REAL wellness. (and I had just come out of major back surgery several months prior!) That feeling is lasting too! I bet if you go back and read some of the posts on C, you can get some ideas on how it has affected others. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 Gretchen, thanks for the info - and the hope for a better tomorrow. i even got my brother - " dan the skeptic " to start. he's had cmt for over twenty years and was quite drained in the hope tank. - dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi Gretchen, actually I did read all the posts on vitamin c b4 i posted...Most posts really just describe how it has made them feel. What I was wanting to know was what doctors have told people. ie if safe or not....I only found a couple posts dealing with doctors advice. Jimmy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Hi June: Well I am learning from everyone that they are on much higher dosages of C than me. But I have just started taking it sooooo I am going slow. I am on 3000 mg a day... since it is water soluable..... that is 1000 morning, noon and night. But I plan to increase my intake by 500 more per dose next. Personally I don't believe in a megadose (if one is good 10 are better) but everyone sees things differently. You need to do what makes you comfortable and what works for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Hi Spy, I actually held steady for a while too. But then one day I noticed I was walking a lot better and felt stronger then before.. I even went into the mall with out my husband. I usually take him with me and hold his hand to steady me. I have so much more energy. I can actually shop longer and do not limit myself to 1 store a day or week. I can do 3 stores now in one day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Hi everyone, Happy Friday, I like checking all the email I get from this site and reading it, but I have ask all of you to please let me know how much Vitaman C you take to feel the difference... Please fill me in... Thanks, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi, Thanks for the reply. How do I know if I have a high acid count? Warm Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Hi , thanks so much for answering, how much do you take a day? Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Hi Elaine, I take 10,000 miligrams a day. That's 10 grams. I have a little update I will write about as soon as I get a little time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 , Hi you are so helpful can I please ask you a question? I don't know anything about taking Vit C, where to get it or how much to take. Will you please fill me in? What does it do for you? Thanks so much. Elaine in Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Hi Elaine, I would love to help you. I take 10,000 miligrams a day of time release. The dose is divided morning and night. Most days I take my morning dose at noon. I buy them at drugstore.com. GNC brand has the most in the bottle, 360 tablets 1,000 miligrams pills. In 7 days I could move toes that haven't moved in years. If you get a chance read the archives. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 Thanks for the Welcome, . And the information. Are you giving the Vitamin C to your children as well and if so, what dose are you using? I will definitely say something to the neurologist when we go next week. Does anyone have a list of physicians or know where I can get one who have knowledge and have worked with CMT? Mandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Elaine, I am not but I take 10,000 mgs a day of vitamin C. Quote Link to comment Share on other sites More sharing options...
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