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---Hi Pam

I am SPMS for ten years, have been taking LDN for over a year now

with good results! I live in Northern NJ and see a neuro in Clifton

NJ.

Compared with Dr B he is very reasonable! Email me at

tazzertazzer@... and I will send you all the information.

Steve

In low dose naltrexone , ghostkat@a... wrote:

> Hi everyone, not sure it's customary to say hello when joining

this group,

> but here goes anyway. I'm 28 yrs old and I was diagnosed with MS

in Feb

> 2003. I've been taking Avonex since May 2003, and after

apparently having lived

> in a cave all this time, I found you and LDN info online three

weeks ago.

> This was my third weekend that I didn't take Avonex. I have left

a message

> with Dr. Bihari's office over the weekend; I am right outside NYC.

>

> I had optic neuritis at age 21 in 1997 and was fine until Feb 2003

when my

> leg went numb. It went away, but May 2003 I went numb over half

my body.

> Nowadays I get tingles, numbness, cold and weakness, etc. in my

legs and calves.

> I think I suffer from fatigue at times.

>

> At this point I'm starting to feel that I do not want to be on

interferon

> anymore, and I'm ready to jump to LDN. I am also trying to read

more about the

> Swank diet and similar philosophy. I think that type of diet can

only help

> regardless of having MS or not. I am very grateful to a

livejournal.com user

> who posted some of this information, because I fear I may not've

discovered

> any of this.. I guess I was following my neuro's advice --.

Tomorrow I will

> let him know what I wish to do, and I hope to hear some support.

>

> I see my neuro every three or four months routinely. My last

MRI's (brain,

> upper 'n lower spine) was in Feb 2003. My dx was apparently

confirmed with

> spinal tap and bloods (also ruled out Lyme).

>

> Thanks for reading. I look forward to learning more from all of

you.

>

> Pam

> Linden NJ / Staten Island NY

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---Ervin

Send me an email and I will reply with two attachments. I don't know

how to send attachments to the group.

Steve

In low dose naltrexone , " Ervin McCarthy "

<ervinmccarthy@c...> wrote:

> please send information. thank you.

> Ervin McCarthy

> [low dose naltrexone] Re: New Member Introduction

>

>

> >

> >

> > ---Hi Pam

> >

> > I am SPMS for ten years, have been taking LDN for over a year now

> > with good results! I live in Northern NJ and see a neuro in

Clifton

> > NJ.

> > Compared with Dr B he is very reasonable! Email me at

> > tazzertazzer@y... and I will send you all the information.

> >

> > Steve

> >

> >

> >

> >

> >

> > In low dose naltrexone , ghostkat@a... wrote:

> > > Hi everyone, not sure it's customary to say hello when joining

> > this group,

> > > but here goes anyway. I'm 28 yrs old and I was diagnosed with

MS

> > in Feb

> > > 2003. I've been taking Avonex since May 2003, and after

> > apparently having lived

> > > in a cave all this time, I found you and LDN info online three

> > weeks ago.

> > > This was my third weekend that I didn't take Avonex. I have

left

> > a message

> > > with Dr. Bihari's office over the weekend; I am right outside

NYC.

> > >

> > > I had optic neuritis at age 21 in 1997 and was fine until Feb

2003

> > when my

> > > leg went numb. It went away, but May 2003 I went numb over half

> > my body.

> > > Nowadays I get tingles, numbness, cold and weakness, etc. in my

> > legs and calves.

> > > I think I suffer from fatigue at times.

> > >

> > > At this point I'm starting to feel that I do not want to be on

> > interferon

> > > anymore, and I'm ready to jump to LDN. I am also trying to read

> > more about the

> > > Swank diet and similar philosophy. I think that type of diet

can

> > only help

> > > regardless of having MS or not. I am very grateful to a

> > livejournal.com user

> > > who posted some of this information, because I fear I may

not've

> > discovered

> > > any of this.. I guess I was following my neuro's advice --.

> > Tomorrow I will

> > > let him know what I wish to do, and I hope to hear some

support.

> > >

> > > I see my neuro every three or four months routinely. My last

> > MRI's (brain,

> > > upper 'n lower spine) was in Feb 2003. My dx was apparently

> > confirmed with

> > > spinal tap and bloods (also ruled out Lyme).

> > >

> > > Thanks for reading. I look forward to learning more from all of

> > you.

> > >

> > > Pam

> > > Linden NJ / Staten Island NY

> >

> >

> >

> >

> >

> >

> >

> >

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please send information. thank you.

Ervin McCarthy

[low dose naltrexone] Re: New Member Introduction

>

>

> ---Hi Pam

>

> I am SPMS for ten years, have been taking LDN for over a year now

> with good results! I live in Northern NJ and see a neuro in Clifton

> NJ.

> Compared with Dr B he is very reasonable! Email me at

> tazzertazzer@... and I will send you all the information.

>

> Steve

>

>

>

>

>

> In low dose naltrexone , ghostkat@a... wrote:

> > Hi everyone, not sure it's customary to say hello when joining

> this group,

> > but here goes anyway. I'm 28 yrs old and I was diagnosed with MS

> in Feb

> > 2003. I've been taking Avonex since May 2003, and after

> apparently having lived

> > in a cave all this time, I found you and LDN info online three

> weeks ago.

> > This was my third weekend that I didn't take Avonex. I have left

> a message

> > with Dr. Bihari's office over the weekend; I am right outside NYC.

> >

> > I had optic neuritis at age 21 in 1997 and was fine until Feb 2003

> when my

> > leg went numb. It went away, but May 2003 I went numb over half

> my body.

> > Nowadays I get tingles, numbness, cold and weakness, etc. in my

> legs and calves.

> > I think I suffer from fatigue at times.

> >

> > At this point I'm starting to feel that I do not want to be on

> interferon

> > anymore, and I'm ready to jump to LDN. I am also trying to read

> more about the

> > Swank diet and similar philosophy. I think that type of diet can

> only help

> > regardless of having MS or not. I am very grateful to a

> livejournal.com user

> > who posted some of this information, because I fear I may not've

> discovered

> > any of this.. I guess I was following my neuro's advice --.

> Tomorrow I will

> > let him know what I wish to do, and I hope to hear some support.

> >

> > I see my neuro every three or four months routinely. My last

> MRI's (brain,

> > upper 'n lower spine) was in Feb 2003. My dx was apparently

> confirmed with

> > spinal tap and bloods (also ruled out Lyme).

> >

> > Thanks for reading. I look forward to learning more from all of

> you.

> >

> > Pam

> > Linden NJ / Staten Island NY

>

>

>

>

>

>

>

>

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Guest guest

Christy,

Welcome! Here are some links that were helpful as a new list member.

Read the FAQ section on the A & M site.

Hair test information to assist with determining deranged mineral transport

from mercury.

http://home.earthlink.net/~moriam/HOW_TO_hair_test.html

How to find a doctor:

http://home.earthlink.net/~moriam/HOW_TO_find_doctor.html

Children with Starving Brains- you can get it at amazon, but read more about

it here.

http://www.autism-rxguidebook.com/DesktopDefault.aspx

Jackie---

I have a son with mild ADHD and though I can't prove it, believe it to

be caused or inhanced by vaccinations. I'm hoping I can find some

good information here so I can better myself, and the world around

me. I'd also like to meet some like-minded individuals.

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Welcome Christy, we're glad to have you as you've certainly come to the

right place!!

-- New Member Introduction

Hello everyone! My name is Christy and I am a new member so I thought

I'd introduce myself…

I'm a 33yr old WAHM in Oklahoma and I love to spend time with my

family, learn about new things and get to know new people. I

personally feel that we all have many choices; we just need to educate

ourselves in order to make the right ones for us, individually.

I am always on the look out for natural ways to heal/prevent dis-

ease. I'm hoping I can find some good information here so I can

better myself, and the world around me. I'd also like to meet some

like-minded individuals.

Hope everyone is doing well and I look forward to getting to know you

all!

Christy Putnam

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> Hello everyone! My name is Christy and I am a new member so I

thought

> I'd introduce myself…

>

> I'm a 33yr old WAHM in Oklahoma and I love to spend time with my

> family, learn about new things and get to know new people. I

> personally feel that we all have many choices; we just need to

educate

> ourselves in order to make the right ones for us, individually.

>

> I have a son with mild ADHD and though I can't prove it, believe it

to

> be caused or inhanced by vaccinations. I'm hoping I can find some

> good information here so I can better myself, and the world around

> me. I'd also like to meet some like-minded individuals.

>

> Hope everyone is doing well and I look forward to getting to know

you

> all!

>

> Christy Putnam

Hi Christy,

I too have a son with ADHD. He's pretty severe and has oppositional

behavior. I certain that his problems stem from vaccinations. We

have chelated about 67 rounds. It has helped but we need much more

improvement. I think early intervention makes a huge difference.

Unfortunately, I didn't learn about this until he was past the prime

time. I am constantly looking for additional therapies that might

benefit him. If you find things that you think help, please post

your successs. Good-luck.

Rae

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Welcome Christy. You will find a wealth of info here and friendly

folks willing to share. All the best to you. cheers,

> Hello everyone! My name is Christy and I am a new member so I thought

> I'd introduce myself…

>

> I'm a 33yr old WAHM in Oklahoma and I love to spend time with my

> family, learn about new things and get to know new people. I

> personally feel that we all have many choices; we just need to educate

> ourselves in order to make the right ones for us, individually.

>

> I am always on the look out for natural ways to heal/prevent dis-

> ease. I'm hoping I can find some good information here so I can

> better myself, and the world around me. I'd also like to meet some

> like-minded individuals.

>

> Hope everyone is doing well and I look forward to getting to know you

> all!

>

> Christy Putnam

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Hi Christy,

Welcome. My name is Haleh and I am pretty new as well.

Congrates for keeping your son Medication free. I heard a recent research on

NPR's Infinite Mind. A program called Mood and Food and there were new studies

on Omega 3 fatty acids and its positive effect on many control groups one of

which were children with ADHD. They found that Omega 3 fatty acid decreases

the if I recall correctly, hyperactivity in ADHD and increases compliance in

children with Dysprexia. Region with High Omega 3 diet have considerable rate

of homicide. You may want to listen to it on line.

Anyway, here, what you'll find is a lot on food absorption, diet, etc. as it

relates to Autism Spectrum but other issues of natural supplement for well

being. A recent exchange has been about Kefir, which you can look up in recent

archives.

Hope all is well.

Haleh

--- Christy <personal_balance@...> wrote:

> Hello everyone! My name is Christy and I am a new member so I thought

> I'd introduce myself…

>

> I'm a 33yr old WAHM in Oklahoma and I love to spend time with my

> family, learn about new things and get to know new people. I

> personally feel that we all have many choices; we just need to educate

> ourselves in order to make the right ones for us, individually.

>

> My son was diagnosed mild ADHD when he was 5 (almost 11 now) and I am

> always loking for alternatives to meds. So far we have been med-

> free ...YAY! I'm hoping I can find some good information here so I

> can better my sons life. I'd also like to meet some like-minded

> individuals.

>

> Hope everyone is doing well and I look forward to getting to know you

> all!

>

> Christy Putnam

>

>

>

>

>

>

>

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My guess would be " work at home mom "

On Jun 11, 2005, at 4:49 PM, vickila1@... wrote:

> what does " WAHM " stand for? vicki

>

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Hi Christy and welcome!

Would you share some of the things you have found successful with your

son? I agree that the name of the game is helping each person find the

best plan for their situation. One eating plan or supplement program

isn't going to be right for everyone. And each of us has different

lifestyle situations we work with.

.

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hi :

Welcome to the group...I am sorry to hear of your

diagnosis but you found the right

place...........everyone here is the best.

I find that swimming in warm water is best for me when

everything is hurting....that is not always possible

tho........nice hot shower sometimes has to take the

place of that. It helps me get going in the AM so I

can move enuf to get to work.

Hopefully we will all get to know more about

you.......again welcome

Pat in So ore.

--- <trickers@...> wrote:

> Hello all -

>

> I just joined the list and thought I'd say hi. My

> name is and I live in Alaska. I was

> diagnosed with RA in February after flaring up in

> January. Luckily (?) I had a good idea of what it

> might be as my Mother also has RA, so I went to the

> doctor and specifically asked for testing for this

> disease and therefore was diagnosed relatively

> quickly.

>

> After doing a lot of research, I chose my course of

> action. I know that kind of sounds funny, but I

> learned through my Father's fight with cancer that

> we really have to be proactive in our own treatments

> much of the time. We have no rheumatologists in

> this area and so I was going through my regular

> doctor. She has been very good with me and willing

> to work with the choices I'm making. I started on

> Methotrexate and Plaquenil but told the doctor I

> wanted to try the antibiotic therapy. She looked

> into it, found that patients of hers who had gone

> out to the Mayo Clinic for treatment options had

> been prescribed antibiotics, and so she wrote me a

> prescription and let me go with it.

>

> I've been on Doxycycline since February. Initially

> I was on 100mg twice a day and found that it was too

> much. I went into a Herxheimer reaction and had a

> lot of trouble getting through it. The good thing

> is that I knew it was having some effect or I

> wouldn't be herxing. I also chose to stay on the

> Plaquenil to try to avoid joint damage, but I did

> drop the Methotrexate. I was also on pain meds

> (Indocin and Oxycodone).

>

> Then in April, after having a very rough winter, I

> decided to try Prednisone. It was amazing how

> quickly I had my (almost) normal life back. I

> started at 40mg, but quickly tapered down (dropping

> 10mg every five days until I was at 10mg per day).

> I was able to go off of the Indocin and Oxycodone.

> Now I'm at 10mg Prednisone every other day, and

> still on the Doxycycline and Plaquenil - but I

> rarely have to take any pain meds other than Advil.

>

>

> With the recent rainy weather we've been having, I'm

> flaring up some. My hands get it especially

> (visible swelling in the joints, and a big lump

> swells up on the back of my left hand). My knees

> and feet hurt too, and sometimes shoulders and

> elbows. It's always odd how it can travel around

> from joint to joint - and sometimes be on the right,

> sometimes on the left, sometimes both! Very strange

> disease we have here. I have found that if I can

> avoid sugar (which I admittedly have a hard time

> doing) and drink lots of water (instead of the diet

> pepsi that I love) I do much better. So much of the

> treatment is up to us, if we can get ourselves to

> take care of it. I also admit I don't get enough

> exercise, but when I'm sore it's hard to get up and

> do things at times! I do work daily (at a fishing

> lodge, so right now it's busy) and that's good for

> me physically and mentally.

>

> I'm pretty devoted to the idea of the antibiotic

> protocol. It takes longer to see results, but the

> concept behind it just fits with my thoughts and my

> personality. I'm only 46 and so I'm looking at

> probably 30 years or more on medications. If I can

> deal with this with a low-dose of antibiotics and

> fewer of the more " serious " drugs, I think I'll be

> better off down the years. At least that's my

> reasoning!

>

> Anyway, just wanted to say hello and introduce

> myself. I'm also interested in what people do for

> exercise when they're sore. Do any of you have a

> particular exercise regimen that you can manage to

> do even when your knees and feet are sore?

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

__________________________________________________

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hi :

Welcome to the group...I am sorry to hear of your

diagnosis but you found the right

place...........everyone here is the best.

I find that swimming in warm water is best for me when

everything is hurting....that is not always possible

tho........nice hot shower sometimes has to take the

place of that. It helps me get going in the AM so I

can move enuf to get to work.

Hopefully we will all get to know more about

you.......again welcome

Pat in So ore.

--- <trickers@...> wrote:

> Hello all -

>

> I just joined the list and thought I'd say hi. My

> name is and I live in Alaska. I was

> diagnosed with RA in February after flaring up in

> January. Luckily (?) I had a good idea of what it

> might be as my Mother also has RA, so I went to the

> doctor and specifically asked for testing for this

> disease and therefore was diagnosed relatively

> quickly.

>

> After doing a lot of research, I chose my course of

> action. I know that kind of sounds funny, but I

> learned through my Father's fight with cancer that

> we really have to be proactive in our own treatments

> much of the time. We have no rheumatologists in

> this area and so I was going through my regular

> doctor. She has been very good with me and willing

> to work with the choices I'm making. I started on

> Methotrexate and Plaquenil but told the doctor I

> wanted to try the antibiotic therapy. She looked

> into it, found that patients of hers who had gone

> out to the Mayo Clinic for treatment options had

> been prescribed antibiotics, and so she wrote me a

> prescription and let me go with it.

>

> I've been on Doxycycline since February. Initially

> I was on 100mg twice a day and found that it was too

> much. I went into a Herxheimer reaction and had a

> lot of trouble getting through it. The good thing

> is that I knew it was having some effect or I

> wouldn't be herxing. I also chose to stay on the

> Plaquenil to try to avoid joint damage, but I did

> drop the Methotrexate. I was also on pain meds

> (Indocin and Oxycodone).

>

> Then in April, after having a very rough winter, I

> decided to try Prednisone. It was amazing how

> quickly I had my (almost) normal life back. I

> started at 40mg, but quickly tapered down (dropping

> 10mg every five days until I was at 10mg per day).

> I was able to go off of the Indocin and Oxycodone.

> Now I'm at 10mg Prednisone every other day, and

> still on the Doxycycline and Plaquenil - but I

> rarely have to take any pain meds other than Advil.

>

>

> With the recent rainy weather we've been having, I'm

> flaring up some. My hands get it especially

> (visible swelling in the joints, and a big lump

> swells up on the back of my left hand). My knees

> and feet hurt too, and sometimes shoulders and

> elbows. It's always odd how it can travel around

> from joint to joint - and sometimes be on the right,

> sometimes on the left, sometimes both! Very strange

> disease we have here. I have found that if I can

> avoid sugar (which I admittedly have a hard time

> doing) and drink lots of water (instead of the diet

> pepsi that I love) I do much better. So much of the

> treatment is up to us, if we can get ourselves to

> take care of it. I also admit I don't get enough

> exercise, but when I'm sore it's hard to get up and

> do things at times! I do work daily (at a fishing

> lodge, so right now it's busy) and that's good for

> me physically and mentally.

>

> I'm pretty devoted to the idea of the antibiotic

> protocol. It takes longer to see results, but the

> concept behind it just fits with my thoughts and my

> personality. I'm only 46 and so I'm looking at

> probably 30 years or more on medications. If I can

> deal with this with a low-dose of antibiotics and

> fewer of the more " serious " drugs, I think I'll be

> better off down the years. At least that's my

> reasoning!

>

> Anyway, just wanted to say hello and introduce

> myself. I'm also interested in what people do for

> exercise when they're sore. Do any of you have a

> particular exercise regimen that you can manage to

> do even when your knees and feet are sore?

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

__________________________________________________

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Hi ,

I'm new to the group too, and also live in Alaska. How the heck did

you get diagnosed so quickly? You must have all the right lab work

etc. I'm having quite the struggle myself. Nothing shows up on lab

work. Sigh. Where in AK are you? My doc says I'm going to have to go

outside for help. Its very depressing. I am also 46. My brother has

RA of some sort, though he has no positive lab work either.

I'm on 10 mg Prednisone a day, but I am not finding it very helpful.

I wonder if it is just too little. If I take higher doses, I get a

real angry rage thing going on.

Well, its late and I need to sleep. Just wanted to say hi.

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Hi ,

I'm new to the group too, and also live in Alaska. How the heck did

you get diagnosed so quickly? You must have all the right lab work

etc. I'm having quite the struggle myself. Nothing shows up on lab

work. Sigh. Where in AK are you? My doc says I'm going to have to go

outside for help. Its very depressing. I am also 46. My brother has

RA of some sort, though he has no positive lab work either.

I'm on 10 mg Prednisone a day, but I am not finding it very helpful.

I wonder if it is just too little. If I take higher doses, I get a

real angry rage thing going on.

Well, its late and I need to sleep. Just wanted to say hi.

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Hi Pat, and thank you for the welcome.

I know well those long hot showers and how good they feel when you're in pain!

I don't have a lot of options for swimming here but the hot showers (sometimes

in the middle of the night) kept me going throughout the winter. I got to the

point that I couldn't stand for long though, so I got a stool for the shower so

I could sit and let the water beat down on my shoulders.

If I do everything right (right diet, right meds, right exercise and proper use

of hot showers, etc.) I can generally maintain these days. But that hot water

is really important to me. I just got a little used motorhome (to go to dog

shows) and I'm going to make sure that the water heater and shower work before I

camp in it. I'm willing to give up phone and computer, but I'm NOT going to

give up my hot showers!

in Alaska

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

From: Alvarez

hi :

Welcome to the group...I am sorry to hear of your

diagnosis but you found the right

place...........everyone here is the best.

I find that swimming in warm water is best for me when

everything is hurting....that is not always possible

tho........nice hot shower sometimes has to take the

place of that. It helps me get going in the AM so I

can move enuf to get to work.

Hopefully we will all get to know more about

you.......again welcome

Pat in So ore.

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Hi Pat, and thank you for the welcome.

I know well those long hot showers and how good they feel when you're in pain!

I don't have a lot of options for swimming here but the hot showers (sometimes

in the middle of the night) kept me going throughout the winter. I got to the

point that I couldn't stand for long though, so I got a stool for the shower so

I could sit and let the water beat down on my shoulders.

If I do everything right (right diet, right meds, right exercise and proper use

of hot showers, etc.) I can generally maintain these days. But that hot water

is really important to me. I just got a little used motorhome (to go to dog

shows) and I'm going to make sure that the water heater and shower work before I

camp in it. I'm willing to give up phone and computer, but I'm NOT going to

give up my hot showers!

in Alaska

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

From: Alvarez

hi :

Welcome to the group...I am sorry to hear of your

diagnosis but you found the right

place...........everyone here is the best.

I find that swimming in warm water is best for me when

everything is hurting....that is not always possible

tho........nice hot shower sometimes has to take the

place of that. It helps me get going in the AM so I

can move enuf to get to work.

Hopefully we will all get to know more about

you.......again welcome

Pat in So ore.

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Hi , and thanks for the welcome!

I had been going to the doctor because I had tendonitis in one ankle. It was

really bad and limiting my life (I have a stick shift van and using the clutch

just to go into town would make it swell up badly). My hands were getting sore

too, especially when I woke up, and then one morning I woke up with bad pain in

one shoulder. Over a couple of days it moved into the other shoulder too. I

was talking with my Mom (who was diagnosed with RA a couple of years ago) and

she told me it sounded just like her initial symptoms. So when I went back into

the doctor I told her I wanted tested for RA. She did the physical exam, noted

the swelling in the joints of my hands (it's really obvious), noted the family

history, did the bloodwork and agreed that I had RA.

So I was able to start on treatment immediately, and chose a course of treatment

that she hadn't used but was willing to research. It's hard at times, but I am

really comfortable with the thought that I'm on the right road. I refuse to let

this disease ruin my life. I went through three months of nearly unable to

move, in constant pain and on high doses of pain meds, and I'm glad to say that

I'm able to function these days (daily pain, but I handle it).

My doctor also told me that I might have to go outside (for you who don't

understand the terminology, " outside " means to the lower 48 states) to see a

rheumatologist, but at this point we're both okay with how things are going. I

have given her written updates on what I'm doing and that I fully accept the

course of treatment as my choice. She initially put me on methotrexate and

plaquenil, but I really don't want to look at decades on toxic drugs.

I'm in the Kenai/Soldotna area - where are you?

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

From:

Hi ,

I'm new to the group too, and also live in Alaska. How the heck did

you get diagnosed so quickly? You must have all the right lab work

etc. I'm having quite the struggle myself. Nothing shows up on lab

work. Sigh. Where in AK are you? My doc says I'm going to have to go

outside for help. Its very depressing. I am also 46. My brother has

RA of some sort, though he has no positive lab work either.

I'm on 10 mg Prednisone a day, but I am not finding it very helpful.

I wonder if it is just too little. If I take higher doses, I get a

real angry rage thing going on.

Well, its late and I need to sleep. Just wanted to say hi.

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Hi , and thanks for the welcome!

I had been going to the doctor because I had tendonitis in one ankle. It was

really bad and limiting my life (I have a stick shift van and using the clutch

just to go into town would make it swell up badly). My hands were getting sore

too, especially when I woke up, and then one morning I woke up with bad pain in

one shoulder. Over a couple of days it moved into the other shoulder too. I

was talking with my Mom (who was diagnosed with RA a couple of years ago) and

she told me it sounded just like her initial symptoms. So when I went back into

the doctor I told her I wanted tested for RA. She did the physical exam, noted

the swelling in the joints of my hands (it's really obvious), noted the family

history, did the bloodwork and agreed that I had RA.

So I was able to start on treatment immediately, and chose a course of treatment

that she hadn't used but was willing to research. It's hard at times, but I am

really comfortable with the thought that I'm on the right road. I refuse to let

this disease ruin my life. I went through three months of nearly unable to

move, in constant pain and on high doses of pain meds, and I'm glad to say that

I'm able to function these days (daily pain, but I handle it).

My doctor also told me that I might have to go outside (for you who don't

understand the terminology, " outside " means to the lower 48 states) to see a

rheumatologist, but at this point we're both okay with how things are going. I

have given her written updates on what I'm doing and that I fully accept the

course of treatment as my choice. She initially put me on methotrexate and

plaquenil, but I really don't want to look at decades on toxic drugs.

I'm in the Kenai/Soldotna area - where are you?

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

From:

Hi ,

I'm new to the group too, and also live in Alaska. How the heck did

you get diagnosed so quickly? You must have all the right lab work

etc. I'm having quite the struggle myself. Nothing shows up on lab

work. Sigh. Where in AK are you? My doc says I'm going to have to go

outside for help. Its very depressing. I am also 46. My brother has

RA of some sort, though he has no positive lab work either.

I'm on 10 mg Prednisone a day, but I am not finding it very helpful.

I wonder if it is just too little. If I take higher doses, I get a

real angry rage thing going on.

Well, its late and I need to sleep. Just wanted to say hi.

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,

You are lucky your case is so straightforward. I've been dealing with

severe fatigue and increasing pain over the last year, and keep getting

told its " stress " . My doc is listening to me now, but all my bloodwork

is negative so there is no clear answer. I live in the Palmer area and

work out of Anchorage.

My brother has something very similar to what I have, and he also has

all negative bloodwork. As far as I know, they are calling him RA and

have him on prednisone with excellent relief for him. I don't think

they have him on anything else. I need to talk to him again as I'm

finding more out about treatment for RA.

I'm glad things are going well for you. What kind of dogs do you

have? I have 4 crazy mutts, 3 aussies and 1 lab mix.

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,

You are lucky your case is so straightforward. I've been dealing with

severe fatigue and increasing pain over the last year, and keep getting

told its " stress " . My doc is listening to me now, but all my bloodwork

is negative so there is no clear answer. I live in the Palmer area and

work out of Anchorage.

My brother has something very similar to what I have, and he also has

all negative bloodwork. As far as I know, they are calling him RA and

have him on prednisone with excellent relief for him. I don't think

they have him on anything else. I need to talk to him again as I'm

finding more out about treatment for RA.

I'm glad things are going well for you. What kind of dogs do you

have? I have 4 crazy mutts, 3 aussies and 1 lab mix.

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--- In low dose naltrexone , " telephonics " <tele.phonics@v...>

wrote:

> I recently was exposed to some information about LDN in its various

> applications to a variety of medical conditions. I am trying to seek

> some evidence that it might be helpful in my wife's case. She has a

> number of major medical problems. Chronic Ligneous Leukemia,A staph

> infection in a knee as a result of total knee replacement,Anemia,

> failing memory and chronic fatigue. The CML is controlled by the use

> of the miracle drug gleevec but it leaves her with low red cell counts

> and low hemoglobin which leads to her fatigue. The bi-monthly Procrit

> shots do not seem to increase her energy level but at least they

> prevent it getting worse. To eliminate her knee infection two

> additional major surgeries would be required and the risk of

> reinfection is very high due to her damaged immune system as a result

> of her CML.CML is basically a cancer in the bone marrow.

> Any response greatly appreciated.

=========

In your wife's situation she would be best off by actually seeing Dr. Bernard

Bihari personally or if you can afford a credit card payment of $500.00 for a

phone consultation with Dr. Bihari that would be great. All your wife's

problems that are listed on the LDN website can be helped with LDN but she would

need to get off ALL her immune system suppressant medications for LDN to work.

Your wife's problems are complicated and needs the head man(Dr. Bihari) to guide

you.

LDN website

http://www.low dose naltrexone.org

For contact with Dr. Bihari click Contact Us on the LDN website.

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Welcome to te list. How many mercury amalgam dental fillings do your kids have?

Did they have all the recommended vaccines? Did any of the boys develop

normally and then regress? Did they appear to react to the vaccines? Did you

have Rhogam with any of them?

S S

<tt>

Hello,  <BR>

My name is Sue. Thank you for allowing me to join this group! I  am married <BR>

stay at home mom who lives in central Virginia. I am married for  the second

<BR>

time (and hopefully the last time) to Jim. We have been married for 8  years,

<BR>

and together for 11. I have 4 children. My oldest is ,  who is 17 and has

<BR>

severe nonverbal autism, and adhd. My second is ,  who is 12 (13 in <BR>

February), who has early onset bipolar disorder, and adhd.  and

<BR>

are not my husband's biological children but he did adopt  them after we got

<BR>

married. My third son is , who is 5, and has a  developmental delay and

<BR>

adhd. My fourth is my only daughter and last child. She  is na, 3, and so

<BR>

far has no disabilities or disorders, and we pray she  stays that way.

<BR>

and na are Jim's only biological children. They  are our children together.

<BR>

All about me. My interests include but are not  limited to: spending time <BR>

with my family and friends, cooking/baking (I love to  watch the FoodNetwork on

<BR>

cable), reading/journaling, watching tv/dvd's,  weightloss management, <BR>

religion, listening to music, sightseeing, bowling,  shopping, dates with my

husband, <BR>

dealing with my children's disorders and  disabilities and trying to get them

<BR>

to be as independent average adults as  possible and just about anything that

<BR>

seems interesting to me! I love  chatting/writing to people. Now that I have

<BR>

written a book about myself, I will  let everyone go back to reading other <BR>

posts to other members.<BR>

<BR>

Hugs and Blessings,<BR>

Sue<BR>

'Wife to: Jim<BR>

Mom to: <BR>

  17 (severe nonverbal autism, developmental delays and adhd--current

<BR>

medicines:  AdderallXR 20mg., Zoloft 50mg., Abilify 10mg., Cod Liver Oil and a

<BR>

daily  multivitamin )<BR>

12 (early onset bipolar disorder, adhd, and possible  ODD--current <BR>

medicines: WellbutrinSR 150 mg., AdderallXR 15 mg, AdderallXR 10  mg., <BR>

DepakoteER 750mg., Abilify 10mg., and daily vitamin)<BR>

5  (developmental delay and adhd,--current medicine: AdderallXR 10mg.,

<BR>

and daily  vitamin)<BR>

na 3 (totally average girl with no disabilities, delays or  disorders so

<BR>

far)<BR>

We live smack tab in the middle of the state of  Virginia....<BR>

<BR>

<BR>

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You did not say if you were on Minocin. I used to have terrible stomach

trouble until I tried the antibiotic protocol. I was able to get off all meds

except a very small maintanance dose of Minocin. Get Henry Scammells book

" ...The Arthritis Breakthrough " if you have not already read it. Many of the

diseases you have can be treated effectively on this protocol. Martha

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Kerry, you should be concerned! There is no reason for ANY

discharge! Is it like pus or what? Or is it just sweat maybe?

Natasha

>

> Hi,

>

> My name is Kerry and my son Tyler is 9 months old as of 9/6/06.

He

> has had the STARband since 8/8/06. We live in Bloomsbury, New

Jersey

> and travel to Sewell New Jersey for our fittings (about 2 hours

> away). My son has been having problems with heat rash and

irritation

> from the helmet. He sometimes gets a discharge from the helmet

when he

> wears it for a long time. My orthotist is not concerned - but I

am.

> Any suggestions would be welcome!

>

> Thanks,

>

> Kerry

>

> Tyler, 9mos STARband since 8/8/06. Other children, , 6yrs,

> , 14 yrs and 17 yrs.

>

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