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thanks so much for all the helpful tips. i have been using a soft

toothbrush along with the alcohol for nicolas' DOC band and quite

honestly, it doesn't smell as bad after i clean it.

i will give the l'oreal kids shampoo a try though. i just hope that

it won't give him any trouble since he has eczema.

we really try to keep the DOC band off no more than 1 hour each day.

his plagiocephaly isn't so bad so we're hoping that he won't have to

wear it longer than 10 weeks as the ortho is predicting.

also, i was reading some of the exchanges about insurance coverage. i

guess we are very lucky because we got our baby's DOC band just in

time before we switched insurance companies and oxford health plan

(our previous insurance) covered all expenses completely. i believe

CT has a good relationship with oxford health plan. right now we have

healthnet and we were advised to wait until our casting is done before

switching because apparently, healthnet gives CT a hard time with

coverage.

jeanette

mom of nicolas - DOC band since 3/27

> >

> > Hello everyone! I'm very pleased that there is an egroup for

> mothers

> > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> > months old and he started wearing the DOC band on Monday - March

> 27.

> > Unfortunately we had to bring him back 2 days later to adjust the

> band

> > since he had 3 pressure points that were just getting too pink.

> >

> > My question for everyone is this: Is it normal for his head and

> the

> > DOC band to have this somewhat " foul " odor when I take it off?

> I've

> > been following the specific instructions that they said. I use 91%

> > alcohol to clean the inside of the band and I even take it off and

> > clean it twice a day instead of once a day because I couldn't stand

> > the smell. I did notice that his head especially the back is very

> > sweaty when I take the band off. My husband mentioned that maybe

> his

> > sweat is affected by the fact that I use Dove soap for his head

> > instead of a baby shampoo.

> >

> > I would appreciate your input.

> >

> >

> > Thanks,

> > Jeanette

> > (Huntington, CT)

> >

>

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thanks so much for all the helpful tips. i have been using a soft

toothbrush along with the alcohol for nicolas' DOC band and quite

honestly, it doesn't smell as bad after i clean it.

i will give the l'oreal kids shampoo a try though. i just hope that

it won't give him any trouble since he has eczema.

we really try to keep the DOC band off no more than 1 hour each day.

his plagiocephaly isn't so bad so we're hoping that he won't have to

wear it longer than 10 weeks as the ortho is predicting.

also, i was reading some of the exchanges about insurance coverage. i

guess we are very lucky because we got our baby's DOC band just in

time before we switched insurance companies and oxford health plan

(our previous insurance) covered all expenses completely. i believe

CT has a good relationship with oxford health plan. right now we have

healthnet and we were advised to wait until our casting is done before

switching because apparently, healthnet gives CT a hard time with

coverage.

jeanette

mom of nicolas - DOC band since 3/27

> >

> > Hello everyone! I'm very pleased that there is an egroup for

> mothers

> > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> > months old and he started wearing the DOC band on Monday - March

> 27.

> > Unfortunately we had to bring him back 2 days later to adjust the

> band

> > since he had 3 pressure points that were just getting too pink.

> >

> > My question for everyone is this: Is it normal for his head and

> the

> > DOC band to have this somewhat " foul " odor when I take it off?

> I've

> > been following the specific instructions that they said. I use 91%

> > alcohol to clean the inside of the band and I even take it off and

> > clean it twice a day instead of once a day because I couldn't stand

> > the smell. I did notice that his head especially the back is very

> > sweaty when I take the band off. My husband mentioned that maybe

> his

> > sweat is affected by the fact that I use Dove soap for his head

> > instead of a baby shampoo.

> >

> > I would appreciate your input.

> >

> >

> > Thanks,

> > Jeanette

> > (Huntington, CT)

> >

>

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Hello Jeanette

If Nicolas has eczema, you can also try an aveeno product. We used

to take that stuff for my daughter Willow and it did great with the

eczema. Also use the high % alcohol. The pharmacies usually have

that behind the counter.

Good luck to you

Sandy Willow's Mom

Torticollis resolved

Cranio Grad (Germany)

>

> Hello everyone! I'm very pleased that there is an egroup for

mothers

> of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> months old and he started wearing the DOC band on Monday - March

27.

> Unfortunately we had to bring him back 2 days later to adjust the

band

> since he had 3 pressure points that were just getting too pink.

>

> My question for everyone is this: Is it normal for his head and

the

> DOC band to have this somewhat " foul " odor when I take it off?

I've

> been following the specific instructions that they said. I use 91%

> alcohol to clean the inside of the band and I even take it off and

> clean it twice a day instead of once a day because I couldn't stand

> the smell. I did notice that his head especially the back is very

> sweaty when I take the band off. My husband mentioned that maybe

his

> sweat is affected by the fact that I use Dove soap for his head

> instead of a baby shampoo.

>

> I would appreciate your input.

>

>

> Thanks,

> Jeanette

> (Huntington, CT)

>

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Hello Jeanette

If Nicolas has eczema, you can also try an aveeno product. We used

to take that stuff for my daughter Willow and it did great with the

eczema. Also use the high % alcohol. The pharmacies usually have

that behind the counter.

Good luck to you

Sandy Willow's Mom

Torticollis resolved

Cranio Grad (Germany)

>

> Hello everyone! I'm very pleased that there is an egroup for

mothers

> of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> months old and he started wearing the DOC band on Monday - March

27.

> Unfortunately we had to bring him back 2 days later to adjust the

band

> since he had 3 pressure points that were just getting too pink.

>

> My question for everyone is this: Is it normal for his head and

the

> DOC band to have this somewhat " foul " odor when I take it off?

I've

> been following the specific instructions that they said. I use 91%

> alcohol to clean the inside of the band and I even take it off and

> clean it twice a day instead of once a day because I couldn't stand

> the smell. I did notice that his head especially the back is very

> sweaty when I take the band off. My husband mentioned that maybe

his

> sweat is affected by the fact that I use Dove soap for his head

> instead of a baby shampoo.

>

> I would appreciate your input.

>

>

> Thanks,

> Jeanette

> (Huntington, CT)

>

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-J- I had the same questions my son sweats like a pig and what i do,

is take off the band every 4 hours wipe down his head and the band

with a cloth, during bath time, I take off the band clean it with

alcohol and put it outside to air out for 1 hour. Eventually his

body will regulate. also I stopped over dressing my son.

-- In Plagiocephaly , " Jeanette Galvez-Piscioniere "

<jsgalvez@...> wrote:

>

> Hello everyone! I'm very pleased that there is an egroup for

mothers

> of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> months old and he started wearing the DOC band on Monday - March

27.

> Unfortunately we had to bring him back 2 days later to adjust the

band

> since he had 3 pressure points that were just getting too pink.

>

> My question for everyone is this: Is it normal for his head and the

> DOC band to have this somewhat " foul " odor when I take it off? I've

> been following the specific instructions that they said. I use 91%

> alcohol to clean the inside of the band and I even take it off and

> clean it twice a day instead of once a day because I couldn't stand

> the smell. I did notice that his head especially the back is very

> sweaty when I take the band off. My husband mentioned that maybe

his

> sweat is affected by the fact that I use Dove soap for his head

> instead of a baby shampoo.

>

> I would appreciate your input.

>

>

> Thanks,

> Jeanette

> (Huntington, CT)

>

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-J- I had the same questions my son sweats like a pig and what i do,

is take off the band every 4 hours wipe down his head and the band

with a cloth, during bath time, I take off the band clean it with

alcohol and put it outside to air out for 1 hour. Eventually his

body will regulate. also I stopped over dressing my son.

-- In Plagiocephaly , " Jeanette Galvez-Piscioniere "

<jsgalvez@...> wrote:

>

> Hello everyone! I'm very pleased that there is an egroup for

mothers

> of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> months old and he started wearing the DOC band on Monday - March

27.

> Unfortunately we had to bring him back 2 days later to adjust the

band

> since he had 3 pressure points that were just getting too pink.

>

> My question for everyone is this: Is it normal for his head and the

> DOC band to have this somewhat " foul " odor when I take it off? I've

> been following the specific instructions that they said. I use 91%

> alcohol to clean the inside of the band and I even take it off and

> clean it twice a day instead of once a day because I couldn't stand

> the smell. I did notice that his head especially the back is very

> sweaty when I take the band off. My husband mentioned that maybe

his

> sweat is affected by the fact that I use Dove soap for his head

> instead of a baby shampoo.

>

> I would appreciate your input.

>

>

> Thanks,

> Jeanette

> (Huntington, CT)

>

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Hi ! Thanks for the link to that website. You saved me a lot of

trouble looking for 99% alcohol in local pharmacies.

I gave Nicolas a bath tonight and decided to try the Mustela shampoo.

I figured I'd start with something hypoallergenic and see how it goes

from there.

Appreciate your input.

Thanks,

Jeanette - mom of Nicolas (DOC band since 3/27)

> >

> > Hello everyone! I'm very pleased that there is an egroup for mothers

> > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> > months old and he started wearing the DOC band on Monday - March 27.

> > Unfortunately we had to bring him back 2 days later to adjust the band

> > since he had 3 pressure points that were just getting too pink.

> >

> > My question for everyone is this: Is it normal for his head and the

> > DOC band to have this somewhat " foul " odor when I take it off? I've

> > been following the specific instructions that they said. I use 91%

> > alcohol to clean the inside of the band and I even take it off and

> > clean it twice a day instead of once a day because I couldn't stand

> > the smell. I did notice that his head especially the back is very

> > sweaty when I take the band off. My husband mentioned that maybe his

> > sweat is affected by the fact that I use Dove soap for his head

> > instead of a baby shampoo.

> >

> > I would appreciate your input.

> >

> >

> > Thanks,

> > Jeanette

> > (Huntington, CT)

> >

>

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Hi ! Thanks for the link to that website. You saved me a lot of

trouble looking for 99% alcohol in local pharmacies.

I gave Nicolas a bath tonight and decided to try the Mustela shampoo.

I figured I'd start with something hypoallergenic and see how it goes

from there.

Appreciate your input.

Thanks,

Jeanette - mom of Nicolas (DOC band since 3/27)

> >

> > Hello everyone! I'm very pleased that there is an egroup for mothers

> > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> > months old and he started wearing the DOC band on Monday - March 27.

> > Unfortunately we had to bring him back 2 days later to adjust the band

> > since he had 3 pressure points that were just getting too pink.

> >

> > My question for everyone is this: Is it normal for his head and the

> > DOC band to have this somewhat " foul " odor when I take it off? I've

> > been following the specific instructions that they said. I use 91%

> > alcohol to clean the inside of the band and I even take it off and

> > clean it twice a day instead of once a day because I couldn't stand

> > the smell. I did notice that his head especially the back is very

> > sweaty when I take the band off. My husband mentioned that maybe his

> > sweat is affected by the fact that I use Dove soap for his head

> > instead of a baby shampoo.

> >

> > I would appreciate your input.

> >

> >

> > Thanks,

> > Jeanette

> > (Huntington, CT)

> >

>

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Thank you, Sandy! I tried the Mustela hypoallergenic shampoo tonight.

If that doesn't work, I will take you up and try an Aveeno product.

I just ordered 99% alcohol tonight. Will keep you guys posted.

Jeanette - mom of Nicolas (DOC band since 3/27)

> >

> > Hello everyone! I'm very pleased that there is an egroup for

> mothers

> > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> > months old and he started wearing the DOC band on Monday - March

> 27.

> > Unfortunately we had to bring him back 2 days later to adjust the

> band

> > since he had 3 pressure points that were just getting too pink.

> >

> > My question for everyone is this: Is it normal for his head and

> the

> > DOC band to have this somewhat " foul " odor when I take it off?

> I've

> > been following the specific instructions that they said. I use 91%

> > alcohol to clean the inside of the band and I even take it off and

> > clean it twice a day instead of once a day because I couldn't stand

> > the smell. I did notice that his head especially the back is very

> > sweaty when I take the band off. My husband mentioned that maybe

> his

> > sweat is affected by the fact that I use Dove soap for his head

> > instead of a baby shampoo.

> >

> > I would appreciate your input.

> >

> >

> > Thanks,

> > Jeanette

> > (Huntington, CT)

> >

>

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Thank you, Sandy! I tried the Mustela hypoallergenic shampoo tonight.

If that doesn't work, I will take you up and try an Aveeno product.

I just ordered 99% alcohol tonight. Will keep you guys posted.

Jeanette - mom of Nicolas (DOC band since 3/27)

> >

> > Hello everyone! I'm very pleased that there is an egroup for

> mothers

> > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> > months old and he started wearing the DOC band on Monday - March

> 27.

> > Unfortunately we had to bring him back 2 days later to adjust the

> band

> > since he had 3 pressure points that were just getting too pink.

> >

> > My question for everyone is this: Is it normal for his head and

> the

> > DOC band to have this somewhat " foul " odor when I take it off?

> I've

> > been following the specific instructions that they said. I use 91%

> > alcohol to clean the inside of the band and I even take it off and

> > clean it twice a day instead of once a day because I couldn't stand

> > the smell. I did notice that his head especially the back is very

> > sweaty when I take the band off. My husband mentioned that maybe

> his

> > sweat is affected by the fact that I use Dove soap for his head

> > instead of a baby shampoo.

> >

> > I would appreciate your input.

> >

> >

> > Thanks,

> > Jeanette

> > (Huntington, CT)

> >

>

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I was able to find 91% alcohol at the store on the shelf; how does that

compare to 99%? Does it work just as well? Thanks!

Molly

California

Nicolas, 5.5 months, tort & plagio, getting STARband in April

, 3

, 6

Re: New member

Hi ! Thanks for the link to that website. You saved me a lot of

trouble looking for 99% alcohol in local pharmacies.

I gave Nicolas a bath tonight and decided to try the Mustela shampoo. I

figured I'd start with something hypoallergenic and see how it goes from

there.

Appreciate your input.

Thanks,

Jeanette - mom of Nicolas (DOC band since 3/27)

> >

> > Hello everyone! I'm very pleased that there is an egroup for

> > mothers of babies with plagiocephaly like me. My son, Nicolas, is 5

> > 1/2 months old and he started wearing the DOC band on Monday - March

> > 27. Unfortunately we had to bring him back 2 days later to adjust

> > the band since he had 3 pressure points that were just getting too

> > pink.

> >

> > My question for everyone is this: Is it normal for his head and the

> > DOC band to have this somewhat " foul " odor when I take it off? I've

> > been following the specific instructions that they said. I use 91%

> > alcohol to clean the inside of the band and I even take it off and

> > clean it twice a day instead of once a day because I couldn't stand

> > the smell. I did notice that his head especially the back is very

> > sweaty when I take the band off. My husband mentioned that maybe

> > his sweat is affected by the fact that I use Dove soap for his head

> > instead of a baby shampoo.

> >

> > I would appreciate your input.

> >

> >

> > Thanks,

> > Jeanette

> > (Huntington, CT)

> >

>

For more plagio info

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I was able to find 91% alcohol at the store on the shelf; how does that

compare to 99%? Does it work just as well? Thanks!

Molly

California

Nicolas, 5.5 months, tort & plagio, getting STARband in April

, 3

, 6

Re: New member

Hi ! Thanks for the link to that website. You saved me a lot of

trouble looking for 99% alcohol in local pharmacies.

I gave Nicolas a bath tonight and decided to try the Mustela shampoo. I

figured I'd start with something hypoallergenic and see how it goes from

there.

Appreciate your input.

Thanks,

Jeanette - mom of Nicolas (DOC band since 3/27)

> >

> > Hello everyone! I'm very pleased that there is an egroup for

> > mothers of babies with plagiocephaly like me. My son, Nicolas, is 5

> > 1/2 months old and he started wearing the DOC band on Monday - March

> > 27. Unfortunately we had to bring him back 2 days later to adjust

> > the band since he had 3 pressure points that were just getting too

> > pink.

> >

> > My question for everyone is this: Is it normal for his head and the

> > DOC band to have this somewhat " foul " odor when I take it off? I've

> > been following the specific instructions that they said. I use 91%

> > alcohol to clean the inside of the band and I even take it off and

> > clean it twice a day instead of once a day because I couldn't stand

> > the smell. I did notice that his head especially the back is very

> > sweaty when I take the band off. My husband mentioned that maybe

> > his sweat is affected by the fact that I use Dove soap for his head

> > instead of a baby shampoo.

> >

> > I would appreciate your input.

> >

> >

> > Thanks,

> > Jeanette

> > (Huntington, CT)

> >

>

For more plagio info

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Jeanette,

You're welcome! Let us know how hte Mustela shampoo works for you.

> > >

> > > Hello everyone! I'm very pleased that there is an egroup for

mothers

> > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> > > months old and he started wearing the DOC band on Monday - March

27.

> > > Unfortunately we had to bring him back 2 days later to adjust

the band

> > > since he had 3 pressure points that were just getting too pink.

> > >

> > > My question for everyone is this: Is it normal for his head and the

> > > DOC band to have this somewhat " foul " odor when I take it off? I've

> > > been following the specific instructions that they said. I use 91%

> > > alcohol to clean the inside of the band and I even take it off and

> > > clean it twice a day instead of once a day because I couldn't stand

> > > the smell. I did notice that his head especially the back is very

> > > sweaty when I take the band off. My husband mentioned that

maybe his

> > > sweat is affected by the fact that I use Dove soap for his head

> > > instead of a baby shampoo.

> > >

> > > I would appreciate your input.

> > >

> > >

> > > Thanks,

> > > Jeanette

> > > (Huntington, CT)

> > >

> >

>

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Jeanette,

You're welcome! Let us know how hte Mustela shampoo works for you.

> > >

> > > Hello everyone! I'm very pleased that there is an egroup for

mothers

> > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> > > months old and he started wearing the DOC band on Monday - March

27.

> > > Unfortunately we had to bring him back 2 days later to adjust

the band

> > > since he had 3 pressure points that were just getting too pink.

> > >

> > > My question for everyone is this: Is it normal for his head and the

> > > DOC band to have this somewhat " foul " odor when I take it off? I've

> > > been following the specific instructions that they said. I use 91%

> > > alcohol to clean the inside of the band and I even take it off and

> > > clean it twice a day instead of once a day because I couldn't stand

> > > the smell. I did notice that his head especially the back is very

> > > sweaty when I take the band off. My husband mentioned that

maybe his

> > > sweat is affected by the fact that I use Dove soap for his head

> > > instead of a baby shampoo.

> > >

> > > I would appreciate your input.

> > >

> > >

> > > Thanks,

> > > Jeanette

> > > (Huntington, CT)

> > >

> >

>

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Hi Jeanette,

Welcome to the group.

na, DOC Grad X2 Feb 04

Kiersten, DOC Grad 4/4/06, Tort Resolved

www.thefilyaws.com/plagio/plagio.html

>

> Hello everyone! I'm very pleased that there is an egroup for

mothers

> of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> months old and he started wearing the DOC band on Monday - March

27.

> Unfortunately we had to bring him back 2 days later to adjust the

band

> since he had 3 pressure points that were just getting too pink.

>

> My question for everyone is this: Is it normal for his head and the

> DOC band to have this somewhat " foul " odor when I take it off? I've

> been following the specific instructions that they said. I use 91%

> alcohol to clean the inside of the band and I even take it off and

> clean it twice a day instead of once a day because I couldn't stand

> the smell. I did notice that his head especially the back is very

> sweaty when I take the band off. My husband mentioned that maybe

his

> sweat is affected by the fact that I use Dove soap for his head

> instead of a baby shampoo.

>

> I would appreciate your input.

>

>

> Thanks,

> Jeanette

> (Huntington, CT)

>

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Thanks, !

Jeanette - mom of Nicolas (DOC band since 3/27)

> >

> > Hello everyone! I'm very pleased that there is an egroup for

> mothers

> > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2

> > months old and he started wearing the DOC band on Monday - March

> 27.

> > Unfortunately we had to bring him back 2 days later to adjust the

> band

> > since he had 3 pressure points that were just getting too pink.

> >

> > My question for everyone is this: Is it normal for his head and the

> > DOC band to have this somewhat " foul " odor when I take it off? I've

> > been following the specific instructions that they said. I use 91%

> > alcohol to clean the inside of the band and I even take it off and

> > clean it twice a day instead of once a day because I couldn't stand

> > the smell. I did notice that his head especially the back is very

> > sweaty when I take the band off. My husband mentioned that maybe

> his

> > sweat is affected by the fact that I use Dove soap for his head

> > instead of a baby shampoo.

> >

> > I would appreciate your input.

> >

> >

> > Thanks,

> > Jeanette

> > (Huntington, CT)

> >

>

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Hi Joyce,

My name is Pam and I am from NC. I have been on LDN a couple of weeks or so. I have what looks and acts like secondary progressive MS. God Bless my neuro for refusing to label it as such. He doesn't want it to influence my thinking or that of insurance, Medicare or others. They may use nomenclature/diagnosis to refuse services and/or money. He says just call it MS. However, the relapses I have had never go all the way back to "better." I was diagnosed at age 52 in 01. Never before had any symptoms to give me any idea I would even have MS. I did have back pain and brain fog after a car accident 4 years before, but I thought it was from the crash. Guess not.

I have taken Copaxone and the others, but they didn't help. Too many bad side effects as well. Steroids helped when I had exacerbation's, but I can no longer take them. I have become type II Diabetic. Maybe even from the steroids. I am so glad to be on LDN. It has given me so much more energy. Right now I have Candida so that kinda cancels out the full benefits of LDN, but soon as I get rid of that I'll be improving. Keep reading what others have to say about this stuff. It has really helped them. I am hopeful. I have been bedridden for over a year. What have I got to lose? I'm going for it! Hope you do too.

Best to you,

Pam

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Hi Joyce,

Everyone seems to experience different levels of help with LDN and different

areas of help. I will send you a copy of the welcome e-mail in just a

moment. I hope you will find some help in answering your questions.

It has been fantastic for my husband. We know of 2 people personally that

have been lucky enough to get out the wheel chair. Of course not everyone

experiences such a great relief, but most people get a significant degree of

help from LDN. I always tell everyone that you won't know what it will do

for you unless you try it. But you should stay on it for at least 6 months

to really see if it will help as a few have found it has taken that long to

see the full spectrum of new relief. Many also take supplements and change

their diets along with taking LDN. These things seem to work well with LDN

as they further help the immune system.

Best of luck

Aletha

[low dose naltrexone] New Member

> Hi, I have been lurking for the past couple of weeks. I was diagnosed

> about 2 years ago at age 55 with secondary progressive MS. Seems I

> missed the relapse-remission phase of the disease except for one optic

> neuritis about 6 years ago.

>

> I would be interested in knowing if any members have secondary

> progressive MS and how the LDN helped or didn't help. Right now I am

> on methotrexate but the MS is progressing and my doctor here in NYC

> would like me to try Copaxon. However, he is willing to let me go on

> LDN also and says he has a few patients taking it and that the primary

> improvement seems to be with fatigue issues. My main problem is with

> balance and leg weakness.

>

> Thanks for the help,

> Joyce

>

>

>

>

>

>

>

>

>

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Thank you for all of the information Aletha.

Have any of you continued on other medications while you take the

LDN? I am nervous about discontinuing other meds until I see if the

LDN helps me.

Joyce

>

> Hi Joyce,

>

> Everyone seems to experience different levels of help with LDN and

different

> areas of help. I will send you a copy of the welcome e-mail in

just a

> moment. I hope you will find some help in answering your questions.

>

> It has been fantastic for my husband. We know of 2 people

personally that

> have been lucky enough to get out the wheel chair. Of course not

everyone

> experiences such a great relief, but most people get a significant

degree of

> help from LDN. I always tell everyone that you won't know what it

will do

> for you unless you try it. But you should stay on it for at least

6 months

> to really see if it will help as a few have found it has taken that

long to

> see the full spectrum of new relief. Many also take supplements

and change

> their diets along with taking LDN. These things seem to work well

with LDN

> as they further help the immune system.

>

> Best of luck

> Aletha

> [low dose naltrexone] New Member

>

>

> > Hi, I have been lurking for the past couple of weeks. I was

diagnosed

> > about 2 years ago at age 55 with secondary progressive MS. Seems

I

> > missed the relapse-remission phase of the disease except for one

optic

> > neuritis about 6 years ago.

> >

> > I would be interested in knowing if any members have secondary

> > progressive MS and how the LDN helped or didn't help. Right now

I am

> > on methotrexate but the MS is progressing and my doctor here in

NYC

> > would like me to try Copaxon. However, he is willing to let me

go on

> > LDN also and says he has a few patients taking it and that the

primary

> > improvement seems to be with fatigue issues. My main problem is

with

> > balance and leg weakness.

> >

> > Thanks for the help,

> > Joyce

> >

> >

> >

> >

> >

> >

> >

> >

> >

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Guest guest

Thank you Pam, it certainly is wonderful to have support from a group

like this. I hope the LDN helps both of us and we can report the

improvement here!

I am currently taking celebrex for arthritis due to changes in gait

from the MS. Does anyone here know if that medication would cause a

problem with the LDN?

Have you all discontinued the baclafen also?

Joyce

>

> Hi Joyce,

> My name is Pam and I am from NC. I have been on LDN a couple of

weeks or so.

> I have what looks and acts like secondary progressive MS. God Bless

my neuro

> for refusing to label it as such. He doesn't want it to influence

my thinking

> or that of insurance, Medicare or others. They may use

> nomenclature/diagnosis to refuse services and/or money. He says

just call it MS. However, the

> relapses I have had never go all the way back to " better. " I was

diagnosed at age

> 52 in 01. Never before had any symptoms to give me any idea I

would even

> have MS. I did have back pain and brain fog after a car accident 4

years

> before, but I thought it was from the crash. Guess not.

> I have taken Copaxone and the others, but they didn't help. Too

many bad

> side effects as well. Steroids helped when I had exacerbation's,

but I can no

> longer take them. I have become type II Diabetic. Maybe even from

the steroids.

> I am so glad to be on LDN. It has given me so much more energy.

Right now I

> have Candida so that kinda cancels out the full benefits of LDN,

but soon as

> I get rid of that I'll be improving. Keep reading what others have

to say

> about this stuff. It has really helped them. I am hopeful. I have

been bedridden

> for over a year. What have I got to lose? I'm going for it! Hope

you do too.

> Best to you,

> Pam

>

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Guest guest

The methotrexate is very toxic. Try to read Dr. Neiper's thoughts on that

drug by contacting the library in Wisconsin. Their number is 608-647-6513.

There are many other things. Why not try Procarin with the LDN or get the

Calcium EAP packet from the library. Best Wishes, Kathy

[low dose naltrexone] New Member

> Hi, I have been lurking for the past couple of weeks. I was diagnosed

> about 2 years ago at age 55 with secondary progressive MS. Seems I

> missed the relapse-remission phase of the disease except for one optic

> neuritis about 6 years ago.

>

> I would be interested in knowing if any members have secondary

> progressive MS and how the LDN helped or didn't help. Right now I am

> on methotrexate but the MS is progressing and my doctor here in NYC

> would like me to try Copaxon. However, he is willing to let me go on

> LDN also and says he has a few patients taking it and that the primary

> improvement seems to be with fatigue issues. My main problem is with

> balance and leg weakness.

>

> Thanks for the help,

> Joyce

>

>

>

>

>

>

>

>

>

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Guest guest

I know it is toxic Kathy, but I have an excellent neurologist and we

are trying different treatments for me. He had suggested

methotrexate and if it had stopped the progression I would have been

very happy. I have no adverse side effects but the MS is progressing

and that is why I am trying the LDN, and if that does not work I will

try Copaxon. In short, I am open to many things, but I do trust my

doctor, so for now I will go along with his advice.

I start the LDN tomorrow I hope, and I will keep you all posted on my

experiences with it. Very exciting!!

Joyce

>

> The methotrexate is very toxic. Try to read Dr. Neiper's thoughts

on that

> drug by contacting the library in Wisconsin. Their number is 608-

647-6513.

> There are many other things. Why not try Procarin with the LDN or

get the

> Calcium EAP packet from the library. Best Wishes, Kathy

> [low dose naltrexone] New Member

>

>

> > Hi, I have been lurking for the past couple of weeks. I was

diagnosed

> > about 2 years ago at age 55 with secondary progressive MS. Seems

I

> > missed the relapse-remission phase of the disease except for one

optic

> > neuritis about 6 years ago.

> >

> > I would be interested in knowing if any members have secondary

> > progressive MS and how the LDN helped or didn't help. Right now

I am

> > on methotrexate but the MS is progressing and my doctor here in

NYC

> > would like me to try Copaxon. However, he is willing to let me

go on

> > LDN also and says he has a few patients taking it and that the

primary

> > improvement seems to be with fatigue issues. My main problem is

with

> > balance and leg weakness.

> >

> > Thanks for the help,

> > Joyce

> >

> >

> >

> >

> >

> >

> >

> >

> >

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Guest guest

I know it is toxic Kathy, but I have an excellent neurologist and we

are trying different treatments for me. He had suggested

methotrexate and if it had stopped the progression I would have been

very happy. I have no adverse side effects but the MS is progressing

and that is why I am trying the LDN, and if that does not work I will

try Copaxon. In short, I am open to many things, but I do trust my

doctor, so for now I will go along with his advice.

I start the LDN tomorrow I hope, and I will keep you all posted on my

experiences with it. Very exciting!!

Joyce

>

> The methotrexate is very toxic. Try to read Dr. Neiper's thoughts

on that

> drug by contacting the library in Wisconsin. Their number is 608-

647-6513.

> There are many other things. Why not try Procarin with the LDN or

get the

> Calcium EAP packet from the library. Best Wishes, Kathy

> [low dose naltrexone] New Member

>

>

> > Hi, I have been lurking for the past couple of weeks. I was

diagnosed

> > about 2 years ago at age 55 with secondary progressive MS. Seems

I

> > missed the relapse-remission phase of the disease except for one

optic

> > neuritis about 6 years ago.

> >

> > I would be interested in knowing if any members have secondary

> > progressive MS and how the LDN helped or didn't help. Right now

I am

> > on methotrexate but the MS is progressing and my doctor here in

NYC

> > would like me to try Copaxon. However, he is willing to let me

go on

> > LDN also and says he has a few patients taking it and that the

primary

> > improvement seems to be with fatigue issues. My main problem is

with

> > balance and leg weakness.

> >

> > Thanks for the help,

> > Joyce

> >

> >

> >

> >

> >

> >

> >

> >

> >

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Guest guest

I am on copaxone and LDN, that is the only abc drug thats ok with

ldn. Give it a try and see if it helps. I feel about the same as I

did before LDn with a few less naps, but I have only been on LDn a

few months.

-- In low dose naltrexone , " dollsesq " <DollsEsq@...>

wrote:

>

> Thank you for all of the information Aletha.

>

> Have any of you continued on other medications while you take the

> LDN? I am nervous about discontinuing other meds until I see if

the

> LDN helps me.

>

> Joyce

>

>

> >

> > Hi Joyce,

> >

> > Everyone seems to experience different levels of help with LDN

and

> different

> > areas of help. I will send you a copy of the welcome e-mail in

> just a

> > moment. I hope you will find some help in answering your

questions.

> >

> > It has been fantastic for my husband. We know of 2 people

> personally that

> > have been lucky enough to get out the wheel chair. Of course not

> everyone

> > experiences such a great relief, but most people get a

significant

> degree of

> > help from LDN. I always tell everyone that you won't know what

it

> will do

> > for you unless you try it. But you should stay on it for at

least

> 6 months

> > to really see if it will help as a few have found it has taken

that

> long to

> > see the full spectrum of new relief. Many also take supplements

> and change

> > their diets along with taking LDN. These things seem to work

well

> with LDN

> > as they further help the immune system.

> >

> > Best of luck

> > Aletha

> > [low dose naltrexone] New Member

> >

> >

> > > Hi, I have been lurking for the past couple of weeks. I was

> diagnosed

> > > about 2 years ago at age 55 with secondary progressive MS.

Seems

> I

> > > missed the relapse-remission phase of the disease except for

one

> optic

> > > neuritis about 6 years ago.

> > >

> > > I would be interested in knowing if any members have secondary

> > > progressive MS and how the LDN helped or didn't help. Right

now

> I am

> > > on methotrexate but the MS is progressing and my doctor here in

> NYC

> > > would like me to try Copaxon. However, he is willing to let me

> go on

> > > LDN also and says he has a few patients taking it and that the

> primary

> > > improvement seems to be with fatigue issues. My main problem

is

> with

> > > balance and leg weakness.

> > >

> > > Thanks for the help,

> > > Joyce

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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Guest guest

Dear Michele,

I asked Dr. herself about the frequency keys and program drivers for the

zappers marketed under her name by Amrein and the " Dr. " Research

Association [which has NO relation to Dr. herself]. She said she has no

faith in any of those as an improvement on simple zapping. Hope this helps.

Blessings!

Arthur

888-533-7007

www.BestZapper.com

www.BestWithoutDrugs.com

New Member

Hi All,

I'm Michele from NY. I've been lurking for a few days now & thought it

was about time I wrote in.

A little about myself... I work professionally in the alternative

health field & also own a health food business. I'm well versed in the

field of herbs & classify myself as a self taught herbologist!

I started using Dr. s Zapper to treat IBS a few years ago. It has

helped me tremendously. I love it & would never be w/o it!

I just purchased a few of the program keys. Today I used the Blood

Pressure key & experienced shocks when the unit finishes its cycles.

Has anyone experienced these small shocks or have any thoughts about

it?

I look forward to being an active contributor to the group. Thanks

Michele

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