Fibromyalgia

[Guest guest]

Talked to his office this morning. His phone # is 818 344-6111. I have an

appointment to see him in early August for treatment of my fibro. Will

write back and let all know how it goes. Penny J

Re: fibromyalgia

> Not sure, but do know he treats CFS. Does anyone have his ph number?

>

> > Tina,

> > Does Dr. Galpin treat fibromyalgia or only CFS?

> >

>

>

> Tina M. Hendrix

> Cure2000@...

> Vice-President, California Coalition

> Neuro-Immune Dysfunction Syndromes

> Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity,

CFS,

> etc.

>

>

>

[Guest guest]

Way to go Penny J!!!!! thanks!

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

I don't know about Dr G's.... BUT I was bedridden for years.....

fresh food carefully prepared, forget the white stuff.....sugar, flour,

potatoes and rice. Forget the animal fats.... they increase the pain.

SAM-e, magnesium and some herbal tonics have gone a long way to helping me

reach the point of recovery where I have regained enough cognitive function

to write this.

The many drugs did little or caused only more problems.

There truly is hope

mjh

In a message dated 6/4/02 2:12:41 PM Eastern Daylight Time, pappadia@...

writes:

> Does anyone know if Dr. Goldberg's protocol helps with this? How about

> any special diets that help?

> I have a friend who was diagnosed with this and is having a hard time

> finding information about how diet plays a role.

> Thanks!

>

>

[Guest guest]

,

i have CFS which is a close cousin of FM. (I had some FM syptoms before Dr.

g's protocol) and it has been successful in providing relief for me. have

her read the ZONE and read Dr. g's article on diet on his website. she can

also contact me for a more indepth explanation.

> Does anyone know if Dr. Goldberg's protocol helps with this? How about

> any special diets that help?

> I have a friend who was diagnosed with this and is having a hard time

> finding information about how diet plays a role.

> Thanks!

>

>

>

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

What's a GFCF diet?

In a message dated 6/5/02 7:19:40 AM Eastern Daylight Time,

dmccreary@... writes:

> Hi ,

> A good friend of mine has FM and she has noticed a huge difference being on

> a GFCF diet.

>

[Guest guest]

Hi ,

A good friend of mine has FM and she has noticed a huge difference being on

a GFCF diet.

Re: Fibromyalgia

> ,

> i have CFS which is a close cousin of FM. (I had some FM syptoms before

Dr.

> g's protocol) and it has been successful in providing relief for me. have

> her read the ZONE and read Dr. g's article on diet on his website. she

can

> also contact me for a more indepth explanation.

> > Does anyone know if Dr. Goldberg's protocol helps with this? How about

> > any special diets that help?

> > I have a friend who was diagnosed with this and is having a hard time

> > finding information about how diet plays a role.

> > Thanks!

> >

> >

> >

>

>

> Tina M. Hendrix

> Cure2000@...

> Vice-President, California Coalition

> Neuro-Immune Dysfunction Syndromes

> Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity,

CFS,

> etc.

>

>

>

[Guest guest]

Gluten free Casein Free

Re: Fibromyalgia

> What's a GFCF diet?

>

>

> In a message dated 6/5/02 7:19:40 AM Eastern Daylight Time,

> dmccreary@... writes:

>

>

> > Hi ,

> > A good friend of mine has FM and she has noticed a huge difference being

on

> > a GFCF diet.

> >

>

>

>

>

>

[Guest guest]

,

I should have added that in addition to a gluten free casein free diet my

friend moved from the east coast to the mid-west, this could explain

possible issues of pollen and mold.

Fibromyalgia

> I have had it for years and pollen and mold makes a huge negative impact

on

> me. Diet has a smaller effect. Kathy -NNY

>

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

>

[Guest guest]

Thanks for the reply to my post!

I've looked over the information about starting a chapter and am

completely overwhelmed. I will pull that stuff out again in the fall

when all three of my kids will be in school (hopefully preschool will go

well for my 2 year old). In the meantime, I am at Marcia's disposal, but

we had chatted about me helping you with the Parent Handbook and that you

would have it after the 27th of May when you went in to work (I hope I

have that right...my senior moments are coming more often). Anyway, I

didn't want to leave you hanging if there is something that I can help

you with, let me know. I've been doing some fundraising within my

family, and the latest tally is $1000+ for the independent company to

come in and review the records. I am still completely ignorant about the

profit/nonprofit thing, and when Mark posted about the study needing

funding I thought I'd make that my pet project.

That's about it from my end. Please let me know when you will be in MD -

I would love to meet you.

________________________________________________________________

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[Guest guest]

Thank you all for responding to my post. I have forwarded them all to my

friend.

Thank you again!

________________________________________________________________

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[Guest guest]

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

From: M Pappadia

I've been doing some fundraising within my

family, and the latest tally is $1000+ for the independent company to

come in and review the records. I am still completely ignorant about the

profit/nonprofit thing, and when Mark posted about the study needing

funding I thought I'd make that my pet project.

Is this study to show the effectiveness of the protocol or is it limited to

one medication? I don't remember reading about a study like this. I think it's

a good idea since there won't be any credibility to this cause without this kind

of study to publish.

[Guest guest]

Oops! This was supposed to go directly to Kathy on. Sorry!

________________________________________________________________

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Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

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[Guest guest]

-

Sorry about the confusion. Marc Share posted a while back that they need

to raise something like $12,000 for an independent company to come in and

review and write a study about the medical records that Dr. G has. I

agree that this would be a great boost for , so I'm doing what I can

to help. I'll try to find Marc's original post and repost it.

On Wed, 5 Jun 2002 19:46:45 -0700 " The Jueschkes "

<meand.mygirls4@...> writes:

>

> ----- Original Message -----

> From: M Pappadia

> I've been doing some fundraising within my

> family, and the latest tally is $1000+ for the independent company

> to

> come in and review the records. I am still completely ignorant

> about the

> profit/nonprofit thing, and when Mark posted about the study

> needing

> funding I thought I'd make that my pet project.

>

> Is this study to show the effectiveness of the protocol or is it

> limited to one medication? I don't remember reading about a study

> like this. I think it's a good idea since there won't be any

> credibility to this cause without this kind of study to publish.

>

>

>

>

>

>

[Guest guest]

Actually it is more like 145,000. 15 was to just get it started. Kathy

[Guest guest]

This sounds like a reason and a specific amount for us to go after corporate

America. is there a business plan or something tangible that we can have for

the grant writing committee?

> Actually it is more like 145,000. 15 was to just get it started. Kathy

>

>

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

,

thank you for this inquiry. we are wnating to know that as well for the

fundraising committee.

> ,

>

> Kathy has indicated to me that we need a study that looks at patients prior

> to beginning treatment with standardized assessment and then follow them

> through the protocol. She's starting this type of study at the end of the

> month. Wouldn't it be better to put all our fundraising efforts to this

> cause? It should also be independently done to avoid prejudice. What's

> the word on that?

>

>

>

>

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

,

Kathy has indicated to me that we need a study that looks at patients prior to

beginning treatment with standardized assessment and then follow them through

the protocol. She's starting this type of study at the end of the month.

Wouldn't it be better to put all our fundraising efforts to this cause? It

should also be independently done to avoid prejudice. What's the word on that?

Re: Fibromyalgia

-

Sorry about the confusion. Marc Share posted a while back that they need

to raise something like $12,000 for an independent company to come in and

review and write a study about the medical records that Dr. G has. I

agree that this would be a great boost for , so I'm doing what I can

to help. I'll try to find Marc's original post and repost it.

On Wed, 5 Jun 2002 19:46:45 -0700 " The Jueschkes "

<meand.mygirls4@...> writes:

>

> ----- Original Message -----

> From: M Pappadia

> I've been doing some fundraising within my

> family, and the latest tally is $1000+ for the independent company

> to

> come in and review the records. I am still completely ignorant

> about the

> profit/nonprofit thing, and when Mark posted about the study

> needing

> funding I thought I'd make that my pet project.

>

> Is this study to show the effectiveness of the protocol or is it

> limited to one medication? I don't remember reading about a study

> like this. I think it's a good idea since there won't be any

> credibility to this cause without this kind of study to publish.

>

>

>

>

>

>

[Guest guest]

-

Apparently I had some misinformation. I was going with the information

that Marc Share, president of the coalition, sent out in December.

I was continuing to fundraise for that effort and this is the first I've

heard that it is impracticle. Thanks to Kathy for clearing that up. I

also was unaware of her study and the need for funds. I'm waiting to

hear back about some questions I've posted to one of the board members,

so I'm on hold for now. I completely agree with Kathy about the validity

of a study that starts at the beginning of treatment with standardized

testing across the board. I guess I'm a bit disappointed that their

wasn't a post about the other study being invalid. I wouldn't have had

my family send checks earmarked for that project.

On Thu, 6 Jun 2002 12:16:23 -0700 " The Jueschkes "

<meand.mygirls4@...> writes:

> ,

>

> Kathy has indicated to me that we need a study that looks at

> patients prior to beginning treatment with standardized assessment

> and then follow them through the protocol. She's starting this type

> of study at the end of the month. Wouldn't it be better to put all

> our fundraising efforts to this cause? It should also be

> independently done to avoid prejudice. What's the word on that?

>

>

>

> Re: Fibromyalgia

>

>

> -

> Sorry about the confusion. Marc Share posted a while back that

> they need

> to raise something like $12,000 for an independent company to come

> in and

> review and write a study about the medical records that Dr. G

> has. I

> agree that this would be a great boost for , so I'm doing what

> I can

> to help. I'll try to find Marc's original post and repost it.

>

>

> On Wed, 5 Jun 2002 19:46:45 -0700 " The Jueschkes "

> <meand.mygirls4@...> writes:

> >

> > ----- Original Message -----

> > From: M Pappadia

> > I've been doing some fundraising within my

> > family, and the latest tally is $1000+ for the independent

> company

> > to

> > come in and review the records. I am still completely

> ignorant

> > about the

> > profit/nonprofit thing, and when Mark posted about the study

> > needing

> > funding I thought I'd make that my pet project.

> >

> > Is this study to show the effectiveness of the protocol or is

> it

> > limited to one medication? I don't remember reading about a

> study

> > like this. I think it's a good idea since there won't be any

> > credibility to this cause without this kind of study to

> publish.

> >

> >

> >

> >

> >

> >

[Guest guest]

I don't know that such a study would be invalid. Maybe it could propel other

study efforts. For one thing, it could be done immediately (if the funds were

there) as where the other study will need at least a year to produce it's first

report. We have to start somewhere.

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

From: M Pappadia

Apparently I had some misinformation. I was going with the information

that Marc Share, president of the coalition, sent out in December.

[Guest guest]

I have charted my son since the beginning (only in Excel mind you) - all

bloodwork 23 tests! - fascinating stuff emerging

Kathy R has a copy of this - as does Dr G. With a big enough sample, there

is validity in running all Dr G's patients, past and present into a

database - there are specific statistical analysis packages that can cater

for differing time points and unique issues about each sample member to

produce usable information. The big issue I think is relating the

measurables like blood work to cognitive functioning......hmmmmm!

RW

Re: Fibromyalgia

,

thank you for this inquiry. we are wnating to know that as well for the

fundraising committee.

> ,

>

> Kathy has indicated to me that we need a study that looks at patients

prior

> to beginning treatment with standardized assessment and then follow them

> through the protocol. She's starting this type of study at the end of the

> month. Wouldn't it be better to put all our fundraising efforts to this

> cause? It should also be independently done to avoid prejudice. What's

> the word on that?

>

>

>

>

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

HI Luann,I used to work second shift and third shift long time ago. I loved

it before I had kids and I was younger then. I also went to school parttime

in the day while I worked nights.

When I had my daughter (she's 21 now) everything changed ...I tried to stay

working third shift still...but she kept getting ear infections cos I was

moving her around at night, so I switched back to 2nd shift ...I worked in

banks and when the work was done we left and got paid for 8 hrs even if we

worked only 5 or 6. BUt she kept getting sick so eventually I moved to days

and she got better .....but I hated days.....and eventually left that job and

moved on to another bank and around that time got pregnant with my son.My dtr

was 4 by then.

So I went back to 2nd shift ...again in a bank and again worked till work

was done ...seldom worked over 30 hrs a week and got paid for 40 but I

ended up leaving that job on WC when I got carpal tunnel in both

wrists.....but I loved second shift when the kids were young....I was a

single parent , still am, and I used to have a sitter who took my kids in as

like part of their family.I could get things done before I went to work(take

kids to drs, laundry, car maintainence,etc).Anyway, I used to sleep when I

could all week and on Sat try to sleep later and on Sunday even later...and

yes it does screw up your clock....but if you have to work you have to work.

Anyway, then I did 24 hour daycare for 5 yrs and about drove myself

mad...went back to school and while going fulltime discvered I was ill with

RA and FM...and soon I gave up school and now am on SS .....and Thank God

......I sleep when I need a nap, I sleep most nights fairly well, if not, I

take something to help....it is very hard on the body tween the meds and

trying to stay " normal " for your kids (well, somewhat normal)....Good luck

........Judy in AZ

[Guest guest]

Hi Luann,

Welcome to our little family. Your reason for finding us is sad, although I

hope that you will enjoy being with us as much as we enjoy getting to know

you.

I worked shift hours for several years when my children were young, however,

I never had the firm diagnosis of fibromyalgia or RA. I was seeing a variety

of doctors for all the problems, but no one could put all the pieces to the

puzzle together. It was great for my kids as they didn't even think that Mom

worked. I worked 10:00 pm to 6:30 am. So I was able to put them to bed and

was home when they got up. All I remember is that I never got enough sleep

just a series of naps throughout the day. The only one who said that I

really had to get off third shift was my GYN doctor. He was beginning to see

a pattern develop. Then I fell and my knee blew out and that is when the

puzzle started to come together. I worked for American Express and they

changed our shifts all the time, so by the time I was officially diagnosed, I

had been put on day shift and then after a few short years, had to leave my

job due to my illness.

Shift work definitely does make the fatigue much more unbearable. You feel

that you NEVER get enough sleep. I would think that with a doctor's note,

that the company would have to make every attempt to accommodate your needs.

Gentle, tender, 9-5 working girl angel hugs,

Debs in FL

[Guest guest]

This question is in regard to the post from Aimee...

how did they make the diagnosis of Fibromyalgia AND

CMT? What are your symptoms? What meds have been

prescribed? Have you had genetic testing to narrow

down the type of CMT you have?

I have a distant cousin who was diagnosed with Chronic

Fatigue Syndrome, and his mother (my mom's first

cousin) wonders if it is all CMT--I was just wondering

how they make a dual diagnosis when symptoms can be

similar?

Thanks!

Joyce S.

[Guest guest]

I just read it is being used for fibromyalgia. It's on the ldn website.

[Guest guest]

Yes, LDN is use for fibromyalgia....there used to be several people

with fibro, posting here. I don't know where they are now, but I

think that there is a Fibro forum somewhere.

Good luck to you.

SallyC.

> I just read it is being used for fibromyalgia. It's on the ldn

website.