Re: Thoughts on Ascorbic Acid Trials

[Guest guest]

Start taking it and stopped when I got mouthful of cancre sores.

Vitamin C or too much ascorbic acid from any citric fruit does that to

me.

Crabtree

[Guest guest]

Good question Gretchen!

After hearing about the tests but not enrolling ourselves, and after

encouragement from my local neurologist, my son and I tried elevated vitamin C

daily. For me, it gave me stomach issues (remember, it is an acid). For my son,

well, he was a typical young teen and remembering the extra daily doses were

just not high on his list. We will try to take daily vitamin C, but not really

in any extra dosage. It has far more benefits to you, and if by chance it helps

do something for our CMT, then all the better.

Mark, 48, NJ

>

> For anyone who has been here since 1994 when the first pre-clinical trials

were done on mice using Ascorbic Acid:

>

>

> How do you feel now that all of the results thus far (around the world) show

Ascorbic Acid (Vitamin C) has no benefit in slowing or stopping the progression

of CMT? I know we have still one last piece of USA research that ends this

month, but I'm curious as to your thoughts on all results so far.

>

>

> If you don't know what I am talking about go to our Files and read through the

folder on Ascorbic Acid.

>

>

> Is anyone who has been taking Vit. C in large doses still doing so and what

has your experience been? Or did you start taking it and stopped, if so what is

your experience?

>

>

> Gretchen

>

[Guest guest]

Gretchen,

I have been on high dose Vit C for at least 10 years. I was told, by Dr

Mendel at OSU, that I have Type 2 CMT. Originally I worked up to 9000 mg of Vit

C. I had to get timed release Vit C and split the dose to bid due to gastric

upset. I have seen a gradual increase in muscle mass and strength, especially

in my hands, since starting the Vit C. I have bilateral foot drop which has not

changed, but I've gained much muscle mass in my feet and legs. My calf muscles

look normal now. I'm currently taking 6000mg per day. The progress has been

slow, but it is positive rather than the slow negative I was experiencing before

starting the Vit C. I have been very pleased with the results!

Sue

[Guest guest]

Well, you did ask ...

I think the studies done so far have been worthless because they started at too

low of a dosage. I know there are multiple dozens of studies to be done between

0-10 g, and jobs to be maintained in the publishing world, but some brave

researcher should just start at 10+g and snatch all the glory while it can be

had.

[Guest guest]

Hi

doses are not high enough, according to me. I've been taking 6 gm daily at one

dose for last two years. I feel tiredness within 36 hours -- markedly

increased, when I skip more than a day. It is really quite noticeable. I have

CMT 1A confirmed. Am also in the health care field and BS in biochemistry

prior, so am very attuned to effects. I suspect there is a metabolic type effect

in some fashion at the higher doses -- that is perhaps not fully understood yet,

but perhaps affects transmission speeds, etc. Who knows... but until high gm

trials are done, I stay with my dose for now. I am also super active, walking

and on my feet for hours -- so also for this reason I notice the effects. Thank

you, by the way for this list serve, as I heard about Vit C here from all of

you. Thanks Gretchen for your continued support and coordination of this group,

with others.

Hope this helps.

Sam

>

> For anyone who has been here since 1994 when the first pre-clinical trials

were done on mice using Ascorbic Acid:

>

>

> How do you feel now that all of the results thus far (around the world) show

Ascorbic Acid (Vitamin C) has no benefit in slowing or stopping the progression

of CMT? I know we have still one last piece of USA research that ends this

month, but I'm curious as to your thoughts on all results so far.

>

>

> If you don't know what I am talking about go to our Files and read through the

folder on Ascorbic Acid.

>

>

> Is anyone who has been taking Vit. C in large doses still doing so and what

has your experience been? Or did you start taking it and stopped, if so what is

your experience?

>

>

> Gretchen

>

[Guest guest]

In 2007 under supervision of a nutritionist I took large dose vitamin C. I

stopped large dosage vitamin C in 2009 due to my ability to participate in CMT

research experiments (which do not allow participants to take supplementation

which may be an influence on findings).

To be honest, I feel stronger now than in 2009 - but this is due to a consistent

regular routine of exercise and endurance activity. My road to strength has

been long and building strength take a very long time and very steady patience.

To me, supplements seem to just working on symptoms. I'd rather focus on the

cure. The experiments about Vitamin C seem to be about whether or not a

substance will stimulate repair of nerve damage - I would rather researchers

focus on substances that will supress the production of the proteins or elements

which are leading to the damage to begin with, not seeking to repair after it

has been done.

Donna in London

CMT1A

[Guest guest]

Thank you Sue!

A little encouragement always helps and if it doesn't really harm us plus is

immune support, I say why not? when I can afford it. Anyway, those of us with

CMT NEED encouragement. I'm seeing these huge articles in the paper about

dinners and fundraisers for MS and I think " Boy that would be nice! Maybe

someday we will get the recognition too! " I know Gretchen will say it's up to me

but that only makes me wish I had something more " popular " that the general

community already had some sympathy for.

Dawn from Buffalo

[Guest guest]

Why not do both types of research?

As for me, if I had to take 20g of AA/day for the rest of my life just to

'repair' the nerves and be able to walk, or hold a glass, I would do it. In

large part this is due to AA not having any realistic serious side effects.

>

> In 2007 under supervision of a nutritionist I took large dose vitamin C. I

stopped large dosage vitamin C in 2009 due to my ability to participate in CMT

research experiments (which do not allow participants to take supplementation

which may be an influence on findings).

>

> To be honest, I feel stronger now than in 2009 - but this is due to a

consistent regular routine of exercise and endurance activity. My road to

strength has been long and building strength take a very long time and very

steady patience.

>

> To me, supplements seem to just working on symptoms. I'd rather focus on the

cure. The experiments about Vitamin C seem to be about whether or not a

substance will stimulate repair of nerve damage - I would rather researchers

focus on substances that will supress the production of the proteins or elements

which are leading to the damage to begin with, not seeking to repair after it

has been done.

>

> Donna in London

> CMT1A

>

[Guest guest]

Why not? Simple answer: because resources are limited.

The sad reality of a collection of genetic anomolies that are misdiagnosed, not

widely understood, or simply " out of mind " for most of the population.

Which is why I actively support both fundraising for a cure, as well as

awareness building initiatives.

What about you?

Donna from London

CMT1A

>

> Why not do both types of research?

>

[Guest guest]

You're right - it costs a lot of money to give someone a vitamin C pill each

day.

What about me? What about ME?! The fact that I am even able to type this

message, and live independently (to a point) is a testament to my active will to

live. And at this point, that's plenty 'awareness building initiative' for me.

That said, I do sincerely appreciate efforts by people like you to find cures,

etc.

I wasn't attacking you previously.

> >

> > Why not do both types of research?

> >

>