Vitamin C

[Guest guest]

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!!!

[Guest guest]

Spy, this is fantastic! It's so cool that this is actually helping us!

[Guest guest]

YEA!!!!!!!!!!!!!

[Guest guest]

Way to go !!!!!!!!!!!!!!! Keep popping that Vitamin C.

Candy

[Guest guest]

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,

[Guest guest]

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.

[Guest guest]

,

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

[Guest guest]

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

[Guest guest]

> 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.

[Guest guest]

Thanks ,

It never would have occurred to me to use both. I think it makes alot of

sense.

Ben

[Guest guest]

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.

[Guest guest]

How much vit c are you giving to your kids?

Mike

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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.

[Guest guest]

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

[Guest guest]

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

[Guest guest]

Hi,

Thanks for the reply. How do I know if I have a high acid count?

Warm Regards,

[Guest guest]

Hi ,

thanks so much for answering, how much do you take a day?

Elaine

[Guest guest]

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.

[Guest guest]

,

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

[Guest guest]

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.

[Guest guest]

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

[Guest guest]

Elaine,

I am not but I take 10,000 mgs a day of vitamin C.