vitamin C

[Guest guest]

Hi all,

I was just reading articles about benefits of vitamin C for people

with CMT. Is anyone of you awared of this? could you please tell me

brief information? what does exactly mean " high doses of vitamin C " ?

how much per day can I take?

Thank you in advance

[Guest guest]

I suggest you do some research on ascorbic acid / vitamin c and come up with an

educated opinion about high doses of vitamin c. Then if you decide to try

vitamin C it will be up to your body on what dose is good for you.

I can tolerate a lot of vitamin C. I take 8 tablets of timed-release a day.

They are 1,000 milligrams each. Making a total of 8 grams a day.

Good luck

[Guest guest]

Of course we're aware of it. had the first major story on

Ascorbic Acid (Vitamin C) for CMT 1A.

We have an entire section in our Files on this. Articles, research,

etc.,so please spend time pouring over the information. After

reading the research and article, go back in our message Archives to

April 2004 and read forward in the posts to get an idea of the

different high doses our members started on.

A " high dose " is anything over the RDA of Vitamin C. Example, some

of our members were taking 8,000 mg throughout the day. A report

issued in April, 2000 by the Institute of Medicine (National Academy

of Sciences) increased the RDA of vitamin C to:

75 mg per day for women;

90 mg for men.

Smokers should add an additional 35 mg per day because their

metabolic turnover of vitamin C is more rapid, as is their rate of

oxidative stress.

In the first mouse study, 30 generations (of mice) proved that

Ascorbic Acid eliminated (arrested/stopped) CMT 1A.

Human trials throughout the world are ongoing. I believe the USA

trials are set to begin this month. (April)

~ Gretchen

[Guest guest]

Hi ,

Thanks for the email. I can also tolerate same dose, but I afraid there might be

a side effect in long term. As far as I know, there is no special side effect

associated with high doses of vitamin C. Am I right? PS, do you feel better when

you are using it?

[Guest guest]

Hi Gretchen

Thanks for the email. By the way, is there any other possible

therapy which may have positive effects regarding my Charcot Marie

Tooth?

[Guest guest]

,

My hand strength continues to improve. I am going into the doctor again tomorrow

for a strength test I will come back and report.

[Guest guest]

Hi ,

Haven't communicated with you in a long time. Anyway,about the Vitamin-C. Like

you, I have been taking the timed-release.

And now that Dr. Shy is about to ramp-up his Vitamin-C trial up in

Detroit, and I'm one of his patients, I've learned from him about

the " half-life " of Vitamin-C. According to him, Vitamin-C has a half-

life of nearly 2 weeks. That means that half of the Vit-C that is

absorbed into each and every one of our cells, is still there 12 to 14

days later.

Therefore, its not necessary to use the timed-release which is more expensive.

There's no harm in taking the timed-release, he just feels it's not necessary.

For the record, the trial subjects who actually recieve the Vit-C will be taking

8 500mg tablets (4 grams) per day. BTW....I'm NOT taking part in his Trial.

Will (or Bill) in KY

[Guest guest]

Hi Bill,

The kids and I have tried regular release but it made us pee way to much. Time

release works better in that respect.

[Guest guest]

I am not a Dr. but when it comes to vitamins I guess you don't have to be. Of

course this is only my vitamin educated opinion but here goes, four grams

regular release vitamin C won't do a darn thing for CMT. But it will keep a

cold at bay.

Maybe part of the doctors study is to prove that a low dose won't help.

Those of us that had access to the original mouse study all take at least 7

grams of vitamin C time release and are having good results. I am sure the

doctor has read the original study that is why I am assuming he is out to prove

that low dose regular release is not enough.

[Guest guest]

I can't find any long term side effects from vitamin C. I have been on it 3

years and so far so good. I actually feel like I rolled back the CMT time

clock.

My hand strength was at a 2 on the left hand at a 5 on the right after I started

vitamin C. A year or so later I tested a 7 on the right hand and left.

Yesterday I was a 10 on the left hand, unfortunately I squeezed the wrong way a

few times wore my right hand out and couldn't get an accurate reading.

Sorry, but I will try again in a few months. But a 10 on the left when I

started at a 2 is pretty good news.

[Guest guest]

,

Thank you for sharing us your experience I think based on emails posted, I

should take 7-8 gram per day to see possible effects. I will let you know as

soon as I feel better.

[Guest guest]

Hi

Are you aware of any benefit of vitamin C for other types of CMT

(like CMT4C, axonal)? I know that at present efforts mainly focus on

CMT1A, is there anyone here having other types of CMT and still

benefiting from ascorbic acid ?

PS, I read articles e.t.c but at last I could not figure out what

dose I should start with. you know, different papers, different

claims, ... I want to take 8 grams per day, I personally do not have

any problem with such a dose, I just afraid a little bit that it may

have a side effect (I am 25 male). My physicians seem to be

conservative, they do not have any idea about ascorbic acide,

because no result has been stated officially yet.

>

> Of course we're aware of it. had the first major story on

> Ascorbic Acid (Vitamin C) for CMT 1A.

>

> We have an entire section in our Files on this. Articles,

research,

> etc.,so please spend time pouring over the information. After

> reading the research and article, go back in our message Archives

to

> April 2004 and read forward in the posts to get an idea of the

> different high doses our members started on.

>

> A " high dose " is anything over the RDA of Vitamin C. Example, some

> of our members were taking 8,000 mg throughout the day. A report

> issued in April, 2000 by the Institute of Medicine (National

Academy

> of Sciences) increased the RDA of vitamin C to:

>

> 75 mg per day for women;

> 90 mg for men.

> Smokers should add an additional 35 mg per day because their

> metabolic turnover of vitamin C is more rapid, as is their rate of

> oxidative stress.

>

> In the first mouse study, 30 generations (of mice) proved that

> Ascorbic Acid eliminated (arrested/stopped) CMT 1A.

>

> Human trials throughout the world are ongoing. I believe the USA

> trials are set to begin this month. (April)

>

> ~ Gretchen

>

[Guest guest]

Hello,

If you are taking 7 grams of Vitamen C would that be 14 of the 500mg

tablets?

Does timed release have different strengths?

Thanks

Tammy

[Guest guest]

Time release comes in 1,000 milligrams tablets.

[Guest guest]

Thought I'd chime in on this one.

I am not sure yet if I am actually seeing any changes. I think I am regaining

some hand strength, but it may be psycosymatic at this point. I have only been

doing this for a month and sometimes I forget the regimen, so....

Anyway, one way that I have been trying is this: I buy my vitamin C in powder

form. 1 teaspoon is 4700 mg. I also buy this stuff called " Emergen-C " it comes

in a flavored powder form and also contains 1000 mg vitamin C as well as an

asortment of other vitamins and minerals. I mix 1/2 teaspoon in 1 packet, 3

times a day. Morning noon and around 7 pm (the emergen-C contains a good dose of

b-12, so I try not to take it too late and not sleep well).

I think this is a good way to go, because the powder form will absorb into the

body better (so I am told).

[Guest guest]

Please realize this is only my educated opinion based on the research I have

done and read.

If you read what Linus ing has written he suggests 1 gram as a daily

supplement. More vitamin C is needed for optimal health and again more for a

therapeutic dose.

This is all just a matter of time, in three years or so the USA trial

results will be released. For now personally, my daughter and I don't mind

taking a therapeutic dose because we see the benefits.

As far as where the original article is I am sure it is in the CMT files.

[Guest guest]

Regular vitamin C will work for mice because they synthesize vitamin C. Human

bodies do not make vitamin C; it has to be ingested.

We don't know until the trials are done if the ability to synthesize makes a

difference in treating CMT with Vitamin C.

[Guest guest]

& Gretchen,

When you stated " 1 gram regular release (Vitamin C) won't do anything for CMT "

was is due to it being just 1 GRAM, or was it due to the Vitamin C being REGULAR

RELEASE?

Also, has anyone heard of 'nanoized' Vitamin C?

Also, maybe it's all the dust, but where does it say how much Vitamin C was

given in the MICE studies, AND how much is being given in the current HUMAN

studies, AND whether the Vitamin C was/is REGULAR, or TIME-RELEASED, or ...??

[Guest guest]

If you want to know the dose and amount the mice got in the first

study, you need to go to our Files and read the paper on it. The mice

were given regular C.

You may also want to go back into our Archives to April 2004 and read

the posts forward for awhile.

~ Gretchen

[Guest guest]

The mice used in the original study of Vitamin-C to treat CMT1A were

injected with 1.4mg I think, the equivalent of 4 grams to a 165lb

human, (4,000mg) once per week. Because their body can synthesize

the Vitamin-C (that is, they keep making more of it once it was

injected, while humans cannot), once a week was enough.

The trials

of Vitamin-C in humans is at least to try to find a dose level that

approximates that which worked for the mice. And how to keep it

working in our bodies, 24/7 like those mice did.

Dr. Shy, who is

heading up the studies at Wayne State seems to believe the natural

half-life of Vitamin-C will take care of that.

But our posted reports that showed a very short half-life of only some 15

minutes. That only tells me there is still much to be learned about Vitamin-C

and our CMT.

Like , I'm still taking the timed-release, hoping

that it will stay in my system most of the 24 hours each day. The

half-life feature will help fill in any gaps between doses is how I

will look at it.

Bill

[Guest guest]

Vitamin C/Ascorbic acid is not going to have any detrimental side effects long

term. In powdered or liquid form it can, however, erode

your tooth enamel. If you take it in this way (helpful for high doses), make

sure it is buffered.

Sudarsky, MD

[Guest guest]

Hi,

I've been watching this discussion with interest, as I am a solid believer in

vitamin c and

also an equally big believer in NT and a traditional diet. I almost felt like a

heretic! It

warms my heart that there are others like me!

I thought I'd share my uses of vitamin c -- I have used it extensively on my 4

year old

daughter, who has never been really sick because I give it to her aggressively

at the first

sign of cold or flu. Before I started with ascorbic acid she had a cough 3-4

times a year,

and now maybe a short cough that lasts one or two days. My 8 week old infant

recently

caught a cold with a fever, I gave him liquid c and he was completely better in

a day. I

followed the Klenner protocol for my second pregnancy (along with a strict NT

diet) and

had a fast and easy delivery and not a single stretch mark. (Beautiful,

round-headed baby,

btw, thanks to CLO, liver, and raw milk.) My husband, who's suffered with asthma

for years

has been able to get off his inhaler and hasn't suffered a single attack since

he's been

taking 4-5 grams of vitamin c a day. (I started NT after this protocol, so I can

say for sure

it was the c that has really helped him -- I also use an essential oil blend on

his chest

during allergy season and that helps tremendously, as well).

I would love to take an acerola type vitamin c, but it just doesn't come in

large enough

doses. The one danger with vitamin c is a copper deficiency, so I make sure that

we all eat

enough liver a few times a month. Also, my husband, who has had heart issues in

the past,

takes a copper supplement.

[Guest guest]

Great to hear that your family is doing so well on high-dose vitamin

C, ! Thanks for the reminder about copper deficiency.

Tom

[Guest guest]

enjoyed your narrative, . When available, I peel and eat rose hips.

Sometimes also red or orange bellpeppers, though the peppers " give me gas " in

any

quantity. Good suggestion about high C precipitating a Copper deficiency.

.. </HTML>

[Guest guest]

What is the " Klenner protocol? " I want to have that kind of pregnancy and

birth-sounds like it was wonderful!

amanda

>followed the Klenner protocol for my second pregnancy (along with a strict

NT diet) and

had a fast and easy delivery and not a single stretch mark. (Beautiful,

round-headed baby,

btw, thanks to CLO, liver, and raw milk.)