Re: Hello everybody

[Guest guest]

Welcome back Rose-Marie. I've just rejoined this list after a few months break

and it feel great.

Take care of you and your boys (my two eldest sons also have CMT - fortunately

very mild). Oh and by the way your family has just increased by hundreds.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

----- Original Message -----

From: dhrtlan@...

Sent: Wednesday, August 08, 2001 12:04 AM

Subject: [] Hello everybody

Hej! (=Hello in Swedish)

For a couple of years ago I was a member of this wonderful mailgroup.

For some months now I have read your messages now and then but not

taken me the time to introduce myself, but probably some of you

remember me. Anyway my name is Rose-Marie, I`m 41 years old now and

live in Sweden. I'm a single mother with two boys; 10 and 14 years

old. We all have CMT 1A which partly effects us the same ways (we all

get quite easily tired and need orthotics) but we are also effected

in different ways. My oldest boy Pierre is the only one in our family

whos feet have ben operated (twice), my youngest son Patric must on

the other hand for example take the med. Prepulsid before every meal

because of his stomachproblams. Probably are his intestines effected

by CMT; they work too slow. The med. helps him though very much so he

doesn't suffer from pain and illness so much as he used to.

Since I was on the list last time I have taken contact with different

relatives of mine I didn´t know before who also have CMT, I guess we

are quite a big " CMTfamily " . We are all different effected in many

ways. Some can't work at all and use scooters. Some of us have pain,

others don't. And one old man for example - he is over 80 years -

just have typical CMT feet with high arches but no other symptoms at

all. He is stronger than most men his age and takes care of his sick

wife, the house and everything. And then there are several cousins

who are like me; we walk mostly without sticks or anything (sometimes

when my legs don´t want to move and feels like dead stocks I use a

crutch) even if a little unsteady, we work part-time, experiences

pain and light depressions now and then.

I must congratulate you to this list, it has really developed with

the bookmarks and everything. Grate when you want to search for

specific topics.

Many warm regards to old and new members from Rose-Marie

[Guest guest]

Hello, Rose-. Very good description of " clinical variability " which is

typical of CMT 1A.

You say that your son takes a medication for lazy bowels. It is not frequent

for a 10 year old child. I have started with the same problem at 25 and some

other CMTers told me they have too. I have always thought that it might be

due to the neuropathy, but since it is a frequent problem in the general

population especially if leading a sedentary life, I gave up considering it

as CMT related.

It would be interesting to see how many of us have prolonged digestion and

constipation.

To conclude, I'd like to join Rose- in congratulating Gretchen for this

list, always full of interesting messages.

Ciao.

Paolo - Italy

----- Original Message -----

From: <dhrtlan@...>

< >

Sent: Wednesday, August 08, 2001 1:04 AM

Subject: [] Hello everybody

Hej! (=Hello in Swedish)

For a couple of years ago I was a member of this wonderful mailgroup.

For some months now I have read your messages now and then but not

taken me the time to introduce myself, but probably some of you

remember me. Anyway my name is Rose-Marie, I`m 41 years old now and

live in Sweden. I'm a single mother with two boys; 10 and 14 years

old. We all have CMT 1A which partly effects us the same ways (we all

get quite easily tired and need orthotics) but we are also effected

in different ways. My oldest boy Pierre is the only one in our family

whos feet have ben operated (twice), my youngest son Patric must on

the other hand for example take the med. Prepulsid before every meal

because of his stomachproblams. Probably are his intestines effected

by CMT; they work too slow. The med. helps him though very much so he

doesn't suffer from pain and illness so much as he used to.

Since I was on the list last time I have taken contact with different

relatives of mine I didn´t know before who also have CMT, I guess we

are quite a big " CMTfamily " . We are all different effected in many

ways. Some can't work at all and use scooters. Some of us have pain,

others don't. And one old man for example - he is over 80 years -

just have typical CMT feet with high arches but no other symptoms at

all. He is stronger than most men his age and takes care of his sick

wife, the house and everything. And then there are several cousins

who are like me; we walk mostly without sticks or anything (sometimes

when my legs don´t want to move and feels like dead stocks I use a

crutch) even if a little unsteady, we work part-time, experiences

pain and light depressions now and then.

I must congratulate you to this list, it has really developed with

the bookmarks and everything. Grate when you want to search for

specific topics.

Many warm regards to old and new members from Rose-Marie

[Guest guest]

Paolo,

Lamar here,

I have occasional problems with constipation. My mother, grandmother, one

aunt, and two great aunts with CMT appeared to loose all peristalsis in

their colon and required repeated enemas to literally " wash " the stool out,

having frequent fecal impactions. All of them also became unable to urinate

and required indwelling catheters for several years. All of their

physicians said that they felt there was a connection with their CMT. I

will add that the physicians all said that independently of each other and

were located in different areas. I do notice a decrease in tactile

sensation to my genital area and have some urinary urgency.

----- Original Message -----

From: Paolo Vinci

Sent: Wednesday, August 08, 2001 07:35 PM

Subject: Re: [] Hello everybody

Hello, Rose-. Very good description of " clinical variability " which is

typical of CMT 1A.

You say that your son takes a medication for lazy bowels. It is not

frequent

for a 10 year old child. I have started with the same problem at 25 and

some

other CMTers told me they have too. I have always thought that it might be

due to the neuropathy, but since it is a frequent problem in the general

population especially if leading a sedentary life, I gave up considering

it

as CMT related.

It would be interesting to see how many of us have prolonged digestion and

constipation.

To conclude, I'd like to join Rose- in congratulating Gretchen for

this

list, always full of interesting messages.

Ciao.

Paolo - Italy

----- Original Message -----

From: <dhrtlan@...>

< >

Sent: Wednesday, August 08, 2001 1:04 AM

Subject: [] Hello everybody

Hej! (=Hello in Swedish)

For a couple of years ago I was a member of this wonderful mailgroup.

For some months now I have read your messages now and then but not

taken me the time to introduce myself, but probably some of you

remember me. Anyway my name is Rose-Marie, I`m 41 years old now and

live in Sweden. I'm a single mother with two boys; 10 and 14 years

old. We all have CMT 1A which partly effects us the same ways (we all

get quite easily tired and need orthotics) but we are also effected

in different ways. My oldest boy Pierre is the only one in our family

whos feet have ben operated (twice), my youngest son Patric must on

the other hand for example take the med. Prepulsid before every meal

because of his stomachproblams. Probably are his intestines effected

by CMT; they work too slow. The med. helps him though very much so he

doesn't suffer from pain and illness so much as he used to.

Since I was on the list last time I have taken contact with different

relatives of mine I didn´t know before who also have CMT, I guess we

are quite a big " CMTfamily " . We are all different effected in many

ways. Some can't work at all and use scooters. Some of us have pain,

others don't. And one old man for example - he is over 80 years -

just have typical CMT feet with high arches but no other symptoms at

all. He is stronger than most men his age and takes care of his sick

wife, the house and everything. And then there are several cousins

who are like me; we walk mostly without sticks or anything (sometimes

when my legs don´t want to move and feels like dead stocks I use a

crutch) even if a little unsteady, we work part-time, experiences

pain and light depressions now and then.

I must congratulate you to this list, it has really developed with

the bookmarks and everything. Grate when you want to search for

specific topics.

Many warm regards to old and new members from Rose-Marie

[Guest guest]

In a message dated 8/9/01 1:52:07 PM Eastern Daylight Time, p.vinci@...

writes:

> You say that your son takes a medication for lazy bowels

[Guest guest]

In a message dated 8/9/01 1:52:07 PM Eastern Daylight Time, p.vinci@...

writes:

> You say that your son takes a medication for lazy bowels

Hi Rosemary,

What is the medication your son takes?

E

[Guest guest]

In a message dated 8/9/2001 7:46:58 PM Eastern Daylight Time, lls@...

writes:

> Lamar here,

>

> I have occasional problems with constipation. My mother, grandmother, one

> aunt, and two great aunts with CMT appeared to loose all peristalsis in

> their colon and required repeated enemas to literally " wash " the stool out,

> having frequent fecal impactions. All of them also became unable to urinate

> and required indwelling catheters for several years. All of their

> physicians said that they felt there was a connection with their CMT. I

> will add that the physicians all said that independently of each other and

> were located in different areas. I do notice a decrease in tactile

> sensation to my genital area and have some urinary urgency.

>

I have had bowel problems for many years. Until I read that CMTers can have

problems with constipation, I had no idea what caused it. Sometimes I have to

rely on enemas to clean my bowels.

[Guest guest]

Welcome Heleen

If you want to know more about NOurishing traditions try looking at the site

below, or just www.westonaprice.org. There's lots to learn!

Peace,

Kris , gardening in harmony with nature in northwest Ohio

If you want to hear the good news about butter check out this website:

http://www.westonaprice.org/know_your_fats/know_your_fats.html

----- Original Message -----

From: " niek_lotte " <post@...>

< >

Sent: Sunday, September 08, 2002 5:49 PM

Subject: hello everybody

Hello everybody,

I'm new here. To be honest, I don't know anything about

the " Nourishing Traditions " . I was on the internet searching for

sourdough starters and fjil mölk and the search machine showd me this

place. I've read a few messages and I found it very intersting here.

For a short time I'm experimenting with Kombucha, waterkefir and

milkkefir and I'm going to become very healthy-food-minded. Sorry for

my uncorrect english. I'll do my best to make myself clear.

Hi Kat. I saw you here to. Nice site you have b.t.w. That fjill mjölk

I can't get here. I've tried everywhere but no luck so far.

Hope to learn a lot here.

Greetings from Holland,

Heleen

[Guest guest]

Heleen,

As an introduction to Nourishing Traditions, you should check out the Weston

A. Price Foundation website (www.westonaprice.org). A gentleman from the

Netherlands has been kind enough to translate several articles into Dutch,

which might make it easier for you to read.

The translations are listed on this page:

http://www.westonaprice.org/translations.html#nl

This particular article is a good introduction:

http://www.westonaprice.org/membership/wapfbrochure_dutch.html

Hope these help!

To French, German, and Spanish speakers on the list, the translation page

also has links to articles in these languages.

To other talented translators, we are always happy to have articles

translated into various languages!

Thanks,

Jill Nienhiser

Webweaver

www.westonaprice.org

www.realmilk.com

-----Original Message-----

From: niek_lotte [mailto:post@...]

Sent: Sunday, September 08, 2002 5:49 PM

Subject: hello everybody

Hello everybody,

I'm new here. To be honest, I don't know anything about

the " Nourishing Traditions " . I was on the internet searching for

sourdough starters and fjil mölk and the search machine showd me this

place. I've read a few messages and I found it very intersting here.

For a short time I'm experimenting with Kombucha, waterkefir and

milkkefir and I'm going to become very healthy-food-minded. Sorry for

my uncorrect english. I'll do my best to make myself clear.

Hi Kat. I saw you here to. Nice site you have b.t.w. That fjill mjölk

I can't get here. I've tried everywhere but no luck so far.

Hope to learn a lot here.

Greetings from Holland,

Heleen

[Guest guest]

Hi : To get some on-the-job training or at least a visual--most

pharmacies would allow you to volunteer a few hours to see how things

actually work. It's a great way to network and a great way to see what you

have been studying. Just an idea-Char. PS--good luck on your test comming

up!! Char

Charleen A. CphT

Technician Representative

Spokane Pharmacy Association

&

Pharmacy Technician/Trainer

Sixth Avenue Pharmacy

W. 508 6th Avenue

Spokane, WA 99204

(509) 455-9345 wk.

(509) 953-9308 cell.

[Guest guest]

Welcome Michele,

Congratulations in joining this study group. I know you will do well

on your exam. Take soem time to study all of the material in your

welcome letters and in the files section Tutorials. Then when ready

ask away!

Here to help...

Jeanetta

> Hello my name is Michele and I live in land. I hope to take

the

> National test in November. Right now I'm not working so it's hard

> to get experience. I really need some help. Hope to talk to

> everyone soon.

>

> Thanks a bunch

> Michele

[Guest guest]

Hi Hannah.... Hang in there hon.... I went thru the same thing here....

Still do at times. I truthfully think our other half just don't now how

to deal with our sickness so they lash out at us. I think that they are

upset that this has happeed to us and to them..... I hear a lot of this

type of think from heppers and that is how I feel on the subject... Just

don't forget that we are here for you any time at all and if you just

want to unload and vent, you go for it... We all do it..... That's why

we are here Hannah....... Don't you ever feel alone. I have been there

where you are many times and I know ow you feel..... Don't let it get

you down.... ;o Sending A BIG HUG to YOU!!!!!! ((((((((Hannah)))))

Feel better yet??????? I do...

Hi Mike. I have heard of the first 3 but the last expensive one I

haven't heard of. I have been taking milk thistle for a while. It is

supposed to help protect the liver. My Gastro told me to take it, but I

was one step ahead of him... ;o I have heard nothing but good things on

the milk thistle. A lot of us take it for the Hep c.... Let us know how

you make out with the herbs Mike!!!! I also take Vitamin C every day...

It is supposed to help with colds and I think it does for me. I take

1000 mg. a day.... Nice to hear from you Mike...

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

[Guest guest]

>

>

> hello there,

>

> my name is linda a dutch woman of 34 with MS

>

> and I have just find out about naltrexone.

>

> could you please gife me some story's(about the jusing of naltrexone)

> if you have MS yourself.

Hi !

I've had RR MS for about 28 years, and I've been taking LDN since July

28th - in that short time, it's improved my balance a lot, the

spasticity in my legs that has been _really bad_ for the last two

years is gone (came back one day last week that I remember, but then

went away again), and I have more energy.. I've stopped taking

Amantadine for fatigue, and I've stopped taking Zanaflex for the

spasticity.. that in itself was great, because the Zanaflex made me

feel very weird mentally...

I had been taking Imuran as an immune supressant for about 20 years,

and in the last 5 years or so, it seemed to stop helping me at all..

my doctor had no idea why.. anyway, I'm off that now as well, and am

glad to be done with that because of the nausea it caused..

I hope you will give Naltrexone a try, and I hope it helps you

Take care,

Janis

[Guest guest]

Hi Emma & welcome to our group!

Good luck getting Eloi's band next week. I've heard good things

about Dr. Pinyot in the Spain center. Keep plugging away at getting

signatures to bring awareness to plagio - good job mom.

Let us know how Eloi likes his band when he receives it. I'm sure

he'll do great!!!

Debbie Abby's mom

MI USA

> Hello to all

>

> My name is Emma and I am from Barcelona (Spain) my small son Eloi

> that has 7 months has plagiocefalia posicional. The Dr.Pinyot

treats

> him in the center that has Cranial Tecnologies in Spain. Next

Sunday

> they will place him the band, I hope everything goes well and that

> the problem is solved in little time.

> Alone he/she wanted to make you know that you are not alone in this

> problem of our children, we are from all over the world people and

> here neither pay us a lot of attention the pediatricians, for that

> reason there am me solidary with you and I have signed in the

> petition that you make to the authorities of your country. We have

> also made a letter to request to our authorities that make us a

> little but of case, and we are picking up signatures.

> Sorry, but I don't speak English very well

>

> many kisses

> Emma

> Mom of Eloi

[Guest guest]

Welcome to the group! You will find great support here. I'm glad

you were able to find treatment over there!

Kim--Gus' mom

DOC Band 8/21/03

> Hello to all

>

> My name is Emma and I am from Barcelona (Spain) my small son Eloi

> that has 7 months has plagiocefalia posicional. The Dr.Pinyot

treats

> him in the center that has Cranial Tecnologies in Spain. Next

Sunday

> they will place him the band, I hope everything goes well and that

> the problem is solved in little time.

> Alone he/she wanted to make you know that you are not alone in this

> problem of our children, we are from all over the world people and

> here neither pay us a lot of attention the pediatricians, for that

> reason there am me solidary with you and I have signed in the

> petition that you make to the authorities of your country. We have

> also made a letter to request to our authorities that make us a

> little but of case, and we are picking up signatures.

> Sorry, but I don't speak English very well

>

> many kisses

> Emma

> Mom of Eloi

[Guest guest]

Emma, Welcome! Hope all goes well with Eloi! I think you speak very

good English, much better English that many of us speak Spanish! Let

us know how things go!

Caro, Mom to Baby Mo, 1 year old, DocBanded 5/23/03 then again

7/30/03, Dallas TX area

> Hello to all

>

> My name is Emma and I am from Barcelona (Spain) my small son Eloi

> that has 7 months has plagiocefalia posicional. The Dr.Pinyot

treats

> him in the center that has Cranial Tecnologies in Spain. Next

Sunday

> they will place him the band, I hope everything goes well and that

> the problem is solved in little time.

> Alone he/she wanted to make you know that you are not alone in this

> problem of our children, we are from all over the world people and

> here neither pay us a lot of attention the pediatricians, for that

> reason there am me solidary with you and I have signed in the

> petition that you make to the authorities of your country. We have

> also made a letter to request to our authorities that make us a

> little but of case, and we are picking up signatures.

> Sorry, but I don't speak English very well

>

> many kisses

> Emma

> Mom of Eloi

[Guest guest]

Hi Emma,

Welcome to the group! Please let us know how Eloi adjusts to his band

when he gets it.

Your English is just fine!

-- In Plagiocephaly , " Emma Mongay Herreros "

<luis_emma1@h...> wrote:

> Hello to all

>

> My name is Emma and I am from Barcelona (Spain) my small son Eloi

> that has 7 months has plagiocefalia posicional. The Dr.Pinyot

treats

> him in the center that has Cranial Tecnologies in Spain. Next

Sunday

> they will place him the band, I hope everything goes well and that

> the problem is solved in little time.

> Alone he/she wanted to make you know that you are not alone in this

> problem of our children, we are from all over the world people and

> here neither pay us a lot of attention the pediatricians, for that

> reason there am me solidary with you and I have signed in the

> petition that you make to the authorities of your country. We have

> also made a letter to request to our authorities that make us a

> little but of case, and we are picking up signatures.

> Sorry, but I don't speak English very well

>

> many kisses

> Emma

> Mom of Eloi

[Guest guest]

Francisco, will you please let us know what you'd like to know about

scoliosis?

> Hi this is Francisco, 47 years old, from Mexico City. I have

scoliosis

> problem and I would like to know more about it, and more.

>

> Thank you, best regards

>

> Francisco

[Guest guest]

, I am sorry to hear this news about your husband. Please be strong and take

care of yourself too. I know is hard when you have someone sick in the house. My

prayer with you. GOD BLESS

T

dxd 1/2003

CCR 7/03

[ ] Hello Everybody

I haven't; posted too much in the past few weeks because I have been dealing

with some serious medical concerns my husband has.

He was recently dx'd with pulmonary hypertension and the feed back that we

are getting is that it has already affected the heart and the liver pretty

drastically.

I really don't know what to do to be honest but be strong and care for

myself so that I don't get sick. The good news is my mother in-law has come

to stay with us for as long as necessary so that I feel better about leaving

the house to go to work without wondering if he's ok at home.

I have my annual bmb & bma on the 22nd.

Does anyone have any feedback on pulmonary hypertension? Zavie didn't you

have CHF and can you point me somewhere for support like we have here?

Suzie I am excited to see you sharing your BMS info with us.

You are the first one that I ma getting to follow on this as I do not have

as much time to keep up with all of the different list. What's going to be

more interesting is to see how your country works with the new BMS and then

see what ours does for comparison.

My prayers are with you as you begin this new journey and again thank you

for sharing it with us.

So much is changing in our CML world and I feel such good things coming for

us and many other people who suffer from many other cancers because of all

this.

Martínez

Tampa FL

Dx 5-2000

[Guest guest]

, I hope all went well today for you. I have been thinking about

you. I hope this also finds your husband feeling much better soon.

Love,

Joan P.

dxd 8/03

Gleevec 800 mg

pcr 6.9%

Zavie #662

[Guest guest]

>You need to read Bruce Fife's books on coconut oil.

> Also if you have high blood pressure, look into seasalt. I gave a

link about celtic seasalt a few posts ago to someone. It goes into

the myth that salt cause high blood pressure, you actually need it to

regulate your blood pressure. It makes interesting reading.

>

> i am a dutch woman.

>

> and i have just started with coconut oil

> i have heard that it can do something against m.s.

>

> does anybody know something about coconut oil and m.s. ?

>

> and i have another question,maybe you will help me with it?

>

> is coconut oil good for high blood pressure?

> will your blood pressure go down from this oil?

>

> love to your all,

> linda

>

[Guest guest]

thank you !

but do you know if it is allright to take coconut oil

when you you have high blood pressure?

the girl from my dad has high blood pressure

and i would love to help her on that.

love,

linda

>

> >You need to read Bruce Fife's books on coconut oil.

> > Also if you have high blood pressure, look into seasalt. I gave

a

> link about celtic seasalt a few posts ago to someone. It goes

into

> the myth that salt cause high blood pressure, you actually need it

to

> regulate your blood pressure. It makes interesting reading.

>

>

>

> >

> > i am a dutch woman.

> >

> > and i have just started with coconut oil

> > i have heard that it can do something against m.s.

> >

> > does anybody know something about coconut oil and m.s. ?

> >

> > and i have another question,maybe you will help me with it?

> >

> > is coconut oil good for high blood pressure?

> > will your blood pressure go down from this oil?

> >

> > love to your all,

> > linda

> >

>

[Guest guest]

> >

> > >You need to read Bruce Fife's books on coconut oil.

> > > Also if you have high blood pressure, look into seasalt. I

gave

> a

> > link about celtic seasalt a few posts ago to someone. It goes

> into

> > the myth that salt cause high blood pressure, you actually need

it

> to

> > regulate your blood pressure. It makes interesting reading.

> >

> >

> >

> > >

> > > i am a dutch woman.

> > >

> > > and i have just started with coconut oil

> > > i have heard that it can do something against m.s.

> > >

> > > does anybody know something about coconut oil and m.s. ?

> > >

> > > and i have another question,maybe you will help me with it?

> > >

> > > is coconut oil good for high blood pressure?

> > > will your blood pressure go down from this oil?

> > >

> > > love to your all,

> > > linda

> > >

> >

>

[Guest guest]

> >

> > >You need to read Bruce Fife's books on coconut oil.

> > > Also if you have high blood pressure, look into seasalt. I

gave

> a

> > link about celtic seasalt a few posts ago to someone. It goes

> into

> > the myth that salt cause high blood pressure, you actually need

it

> to

> > regulate your blood pressure. It makes interesting reading.

> >

> >

> >

> > >

> > > i am a dutch woman.

> > >

> > > and i have just started with coconut oil

> > > i have heard that it can do something against m.s.

> > >

> > > does anybody know something about coconut oil and m.s. ?

> > >

> > > and i have another question,maybe you will help me with it?

> > >

> > > is coconut oil good for high blood pressure?

> > > will your blood pressure go down from this oil?

> > >

> > > love to your all,

> > > linda

> > >

> >

>

[Guest guest]

http://www.virgincoconutoil.ca/virgin_coconut_oil_liver_disease.htm

go here amd read . it says helps against degenerative diseases.

-------------- Original message --------------

From: " l49i49n49 " <hansveerman@...>

i am a dutch woman.

and i have just started with coconut oil

i have heard that it can do something against m.s.

does anybody know something about coconut oil and m.s. ?

and i have another question,maybe you will help me with it?

is coconut oil good for high blood pressure?

will your blood pressure go down from this oil?

love to your all,

linda

[Guest guest]

thank again !

you are great { :

i will ask the book:coconit cures by bruce Five for my birthday

it would be wonderful to read[i can`t wait{ ; ]

love ya,

linda

> > >

> > > >You need to read Bruce Fife's books on coconut oil.

> > > > Also if you have high blood pressure, look into seasalt. I

> gave

> > a

> > > link about celtic seasalt a few posts ago to someone. It goes

> > into

> > > the myth that salt cause high blood pressure, you actually

need

> it

> > to

> > > regulate your blood pressure. It makes interesting reading.

> > >

> > >

> > >

> > > >

> > > > i am a dutch woman.

> > > >

> > > > and i have just started with coconut oil

> > > > i have heard that it can do something against m.s.

> > > >

> > > > does anybody know something about coconut oil and m.s. ?

> > > >

> > > > and i have another question,maybe you will help me with it?

> > > >

> > > > is coconut oil good for high blood pressure?

> > > > will your blood pressure go down from this oil?

> > > >

> > > > love to your all,

> > > > linda

> > > >

> > >

> >

>