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Hi, Rhonda. My name is Marc. I am very curious about the vitamin therapy you

mention. I'm now 41 and was basically diagnosed more than twenty years ago,

and for a long time I didn't realize there was much I could do besides watch

my weight and exercise (do some of you have problems with weight? Sometimes

it's hard to burn off the calories...). But in the last few years I have

been learning that there are things I can do to help myself in terms of this

disease. I have been learning about which vitamins are helpful and how they

are best taken (with what other vitamins for best absorption, etc). And also

about herbs. There are herbs that it seems will help. Any info in these

areas would be great. Thanks.

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Hi Betty--

You said--Welcome Rhonda, Betty here, where in PA do you live. I am from

the

Lancaster, PA area.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Betty, I live in York. Surely you know where that is, if you're in the

Lancaster area. I'm in East York, close to all the malls (and I'm not

bragging when I say that, I'm complaining) Traffic is horrendous over

weekends and holidays. If you're coming to York sometime, email me, maybe

we can meet.

Later, Theresa

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Rhonda: I can't believe you live in York. I would love to meet with you

sometime, maybe when the weather gets a little warmer. I have always

wondered if anyone else has CMT around this area. Do you know of anybody

else in this neck of the woods with CMT?If you are ever in Lancaster e-mail

me also. My e-mail address is Buchie54@...

Betty

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Dear Rose

I am DIMITRIOS OF GREECE and i send you some information about CMT.

I have found these from the address http://www.cmtint.org and i believe that

there you can find more information about your questions.

<<... Pain from nerve deterioration and weak, tired, overworked muscles is

common and we work with a lot of CMT people who are in pain. A feeling of

nerve or muscle crawling called formication and burning, mainly on the soles

of the feet and palms of the hands and sometimes the behind and back of

thighs as well as tremors can also be part of CMT. Sciatic leg pain and foot

pain are also common. We continue to print a page on a variety of aspects of

pain and pain management in each newsletter and we are actively involved in

pain research.

Some people with CMT experience bouts of unexplained diarrhea or

constipation. Some are extremely sensitive to light and sound, hot or cold

and many are sensitive to stimulants such as caffeine and react badly to

alcohol and tobacco and are sensitive to normal adult doses of many drugs,

instead taking a child's dosage after talking to their physician.

Drugs contraindicated for CMT

Drugs which may aggravate or exacerbate CMT

Adriamycin - for cancer

Alcohol

Amiodarone - for irregular heartbeat

Chloramphenicol - antibiotic

Cis-platinum - for cancer

Dapsone - for chronic and certain rare skin diseases, also for leprosy

Diphenylhydantoin (Dilantin) - for seizures and pain

Disulfiram (Antabuse) - alcoholics

Ethionamide - for tuberculosis

Flagyl (Metronidazole) - for trichomonas infection - read the labels on

prescriptions for vaginal bacterial infections - alert doctor - can be found

in combination with another drug for vaginal yeast infections, also used

topically for acne and orally as an antibiotic by some dentists and doctors

Glutethimide (Doriden) - sleeping pill

Gold - for rheumatoid arthritis

Hydralazine (Apresoline) - high blood pressure

Isoniazid (INH) - for tuberculosis

Lithium - for manic depressive illness or headache prevention

Misomidazole - for cancer

Nitrofurantoin (Furadantin, Macrobid, Macrodantin) - for urinary tract

infection - alert doctor

Nitrous Oxide (chronic repeated inhalation) - an anesthetic

Penicillamine - rheumatiod arthritis

Perhexiline (Pexid) - for angina

Pyridoxine (Vitamin B6) - a vitamin

Suramin, Taxol, Vincristine - for cancer

Tobacco

Zoloft

Megadoses of vitamins A, B6 and D can be harmful. Check carefully with your

doctor and pharmacist before taking any drug. Ask them to look for the words

" could cause peripheral neuropathy " in the drug description. In almost all

the conditions in which these drugs are used an alternative can be found.

If you need lithium, or misomidazole for cancer or other cancer drugs,

discuss possible repercussions with your doctor.

Zoloft can cause increased fatique but is not necessarily dangerous to those

who need it.

Remember that all drugs have side effects. You could be extremely sensitive

to drugs not listed here.

Megadoses of some vitamins can also be toxic.

Our motto is to BE AWARE and BEWARE.........>>

Rose-Marie Isakson wrote:

> From: Rose-Marie.Isakson@... (Rose-Marie Isakson)

>

> Hello everybody!

>

> I´m also interested of hearing what vitamines you think are good for us.

> My doctors have never said someting about this things, only that there is

> nothing to do about CMT, except light excercise.

> And what about alcohol? Does it hurt our nerves in some way? Anybody who

> knowes?

>

> About raising in weight; don´t you think that it is easy for us when we

> are doing everything in more slow tempo than others? Both me and my sons

> are a little to fat.

>

> from Rosis in Sweden

>

> ---------------------------

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