Re: European Vitamin C trials

[Guest guest]

Hi Sally,

Remember something, Vitamin C (ascorbic acid) has only proved to

completely arrest CMT 1A in mouse models. And to get this result, 30

generations of mice were studied. This mouse study is the ONLY

conclusive evidence we have about this right now. Do you realize how

long it would take to conduct a C trial in 30 generations of humans?

Remember too, a mouse's body can synthesize Vitamin C. A human's body

cannot. Then 'human' element here, is what I suppose many docs are

leery of.

All of the human trials ongoing or about to start will show us exactly

what Vitamin C will do - depending on age of participants, the nature

of the disease and symptoms within those participants, and more.

I feel NA docs are still skeptical here about the use of 'C' simply

because it is not a new compound, nor is there any big $ profit to be

made. As you know, we all have access to C at our stores, etc. C has

been used for years in different ways to help other illnesses. I have

always wondered why docs have never tried to work with Vitamin therapy

for CMT before. There are only the 2 or 3 Vitamin E studies from years

ago, but they were positive.

As you know, I have been on Vitamin E for 10 years at the suggestion of

my Internist. His background is not only in Internal Medicine, but

neurology and rheumatology. If you remember my teen years, my

neurologist had me on liquid percription Potassium therapy. Also in my

teens I was prescribed two mega-strength Theragran vitamins each day.

So there are 'inklings' that some doctors are award of

itamin/supplementation therapy.

I also feel that Euro-research is intensively progressive, and that

funding and collaboration is more readily facilitated. I feel that US

docs are incredibly egocentric,perhaps they are waiting to

make 'individual' discoveries themselves, within the confines of their

own labs, studies, etc.

I do not know exact protocols of the C trials ongoing, with one

exception. The trial in the Netherlands includes only 6 or 8 young

people, ages 18-25 with CMT 1A. When I spoke with the team leader, he

explained that the study was on young people because he is specifically

looking for a way to slow the disease - even stop it from progressing

as fast for some. But his study includes a specific age group for this

reason.

No doubt each trial has it's own protocols. It will take some time

unitl we all have access to the results.

The entire French study on mice is in our Files section. You might want

to print off a copy and show it to Gavin's neuro, for his information.

I have to admitt that I too, am surprised by his attitude. Yes, I do

suspect North American docs are more wary - even 'skeptical' about the

benefits of C for CMT 1A. I feel docs want 'drugs' developed to help

people - Vitamin C is already available, easily attainable, and takes

away the docs 'contol issues' docs have.

I meant to comment on Gavin's 'airplane exercises' - very cool how your

PT arranged this. I do a similiar hamstring stretch a la 'airplane

position' in the pool.

Hope you, Gavin and Rob are enjoying summer to the max!

~ Gretchen

[Guest guest]

Here in Belgium, they have time till end of this year to go along with a

ascorbic acid study.

Reason they do not is - I heard this directly from a neurologist in Antwerp -

the fact that vitamin C is available over the counter, and that possibly

participants could falsify the results by taking extra vit. C or eating many

oranges and kiwi's themselves, NOT the fact they are sceptical that vit C. could

actually work.

As he says : Swann cells in vitro NEED vit C to make myelin, so he thinks vit C.

could actually help, only results of a study have to be studied with great care.

Lea