Re: Ascorbic Acid (Vitamin C) update at AAN meeting

[Guest guest]

This surprises me since so many of our group tell a different story

regarding Vit C.

Barb

[Guest guest]

They should have tested me. I can tolerate a large amount of vitamin C without

side effects and so can my children. I also know that Vitamin C has increased my

hand strength. This just gives me another reason not to trust the MDA.

[Guest guest]

Now, I am taking 13000 mg. I think I can have more gradually.

Maybe someday, I can finish a whole bottle of vitamin C everyday.

Does this mean that I have very high potential to be cured? Don't know??????

Caroline

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> They should have tested me. I can tolerate a large amount of

vitamin C without side effects and so can my children. I also know

that Vitamin C has increased my hand strength. This just gives me

another reason not to trust the MDA.

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[Guest guest]

Maybe the study should have used time release tablets. Like I have been saying

for years now.

[Guest guest]

This news seemed odd to me to. Odd is was only a 1 year study, while

all the others are for multi-years; Odd only 12 were the original

participants (unless this is the Belgian study that was in Phase II I think; odd

the drop-out rate was so high (if this was the Belgian study perhaps the drop

out rate was due to the young age). Odd only 5 grams were used (maybe more

needed?). When this report is published, we will know more about this trial. I

am also very interested in the ages of participants in this one.

This has me thinking. To get around the stomach upsets, perhaps

Ascorbic Acid injections could be used. Persons could be easily

trained to give their own injections at home (similiar to insulin

injections or what I had for my allergy injections). Then keep a daily

journal of date/time/amount/effects to take in to researchers for

check-ins and reviews.

~ Gretchen

[Guest guest]

I just chew regular tablets. Granules don't seem bother my stomach lining or

intestine. I do that with Asprin too. Time release tablets are good but

sometimes they don't disolve. I wonder if calcium ascorbate would work?

Ed

[Guest guest]

I wonder if they tested this against a placebo or what they really

did?? Very small sample as well. My husband started alot of AA and

says he feels better than he has in years. It also has helped him lose weight

and it is the first allergy season that he hasnt been in

misery. He has only had to take 2 allergy pills. Also did they

measure peoples strength....I dunno. I'm not throwing out all our vit. c yet.

Amelia

[Guest guest]

Tonya,

What brand vitamins are you buying? Some companies make a smaller vitamin C

pill. Maybe it's the size that bugs you?

For now stay positive about it all and take as many vitamin C's as you can

stand. Even if it's only 2 or 3 pills.

Your not alone it is not uncommon to need a lot of pills when you have a

medical problem. My Father in Law has a heart condition and needs to take 13

pills a day. HIV patients are now down to a few pills a day but when treatment

was first available years ago they had to take as many as 30 pills a day. My

sister has a liver problem, she needs to take 8 pills a day and watch what she

eats.

[Guest guest]

Is there another way to get the needed megadose of vit C other than

choking down 6-8 pills a day (or in some cases 10-13)?? They gave the

mice injections - wonder if that's possible for humans... I started

the vit C, but just can's swallow that many!! (even tried spreading it

out over the day...)

Tonya

[Guest guest]

I don't know what to think about the results from the tests they took and I have

yet to have a personal experience, but I am conducting my own test. Currently I

am taking around 8000 mg I ingest this by mixing powdered Vit C with a product

called Emergen-C (1,000 mg) three times a day. The powdered Vit C is a much

higher dose (5,000 mg per teaspoon). I mix a little over 1/2 teaspoon with the

Vit C 3 times a day.

I have a high tolerence, I guess, because I don't seem to have a ny stomach

problems as long as I eat something before (banana, cereal, yogurt, apple, etc.)

The one thing that I make sure to do after ingestation is rinse my mouth with

water. The reason being that, I understand that powdered vit-C is very tough on

teeth enamel.

[Guest guest]

The full title of this poster session (SCO2.016) at the American

Academy of Neurology meeting is " Tolerability of High Dose Ascorbic

Acid in a Population of Genetically Confirmed Adult CMT 1A Patients " .

(SCO2.016) The researcher is Cory Toth from Alberta, Canada.

I hope to know more soon.

~ Gretchen

[Guest guest]

Hi Gretchen,

That study of Vit-C at AAN meeting only points up the need for a

controlled study of a larger patient population than just the 12

mentioned in that study. A study that employs a double blind approach,

as well as placebos, over a period of time longer than that study of

just one year. With the human trials under way in the Netherlands,

Italy and elsewhere, including here in the USA, there should be more

data available by as early as later this year/early next year. Those

trials were expected to last about 2 years each if I remember

correctly.

Will in KY