New member

[Guest guest]

Hi Susie: welcome to the group..

hope you will find what yo need here

Sherri

Susie wrote:

Hello All,

I am 25 and I'm from england in Leicester. I am a student studying

admin level one.

My hobbies are reading, sending emails, movies, chatting online and

music. I have 2 brothers and 4 sisters. I have one rabbit. I hopefully

I fit in here. I suffer from stress, depression and Autism.

Susie

http://health.groups.yahoo.com/group/AffirmationstoDe-Stress

A positive thinking, positive affirmations support group, discussing ways to

cope with the stresses of daily life. Come aboard! PJ and Gang

[Guest guest]

> Thanks for the Welcome sherri.

Susie

Hi Susie: welcome to the group..

> hope you will find what yo need here

> Sherri

>

> Susie wrote:

> Hello All,

>

> I am 25 and I'm from england in Leicester. I am a student studying

> admin level one.

>

> My hobbies are reading, sending emails, movies, chatting online and

> music. I have 2 brothers and 4 sisters. I have one rabbit. I hopefully

> I fit in here. I suffer from stress, depression and Autism.

>

> Susie

>

>

>

>

> http://health.groups.yahoo.com/group/AffirmationstoDe-Stress

>

> A positive thinking, positive affirmations support group, discussing ways

> to cope with the stresses of daily life. Come aboard! PJ and Gang

>

>

>

>

>

>

>

>

>

[Guest guest]

you're very welcome..;we have a lot fo the same interests..

hopefully we can become friends..

Sherri

Susie Barratt wrote:

> Thanks for the Welcome sherri.

Susie

Hi Susie: welcome to the group..

> hope you will find what yo need here

> Sherri

>

> Susie wrote:

> Hello All,

>

> I am 25 and I'm from england in Leicester. I am a student studying

> admin level one.

>

> My hobbies are reading, sending emails, movies, chatting online and

> music. I have 2 brothers and 4 sisters. I have one rabbit. I hopefully

> I fit in here. I suffer from stress, depression and Autism.

>

> Susie

>

>

>

>

> http://health.groups.yahoo.com/group/AffirmationstoDe-Stress

>

> A positive thinking, positive affirmations support group, discussing ways

> to cope with the stresses of daily life. Come aboard! PJ and Gang

>

>

>

>

>

>

>

>

>

[Guest guest]

> Thanks Sherri, I think we know each other from depression with hope group

> and depression-anxiety ones.

Susie

you're very welcome..;we have a lot fo the same interests..

> hopefully we can become friends..

> Sherri

>

> Susie Barratt wrote:

> > Thanks for the Welcome sherri.

>

> Susie

>

> Hi Susie: welcome to the group..

> > hope you will find what yo need here

> > Sherri

> >

> > Susie wrote:

> > Hello All,

> >

> > I am 25 and I'm from england in Leicester. I am a student studying

> > admin level one.

> >

> > My hobbies are reading, sending emails, movies, chatting online and

> > music. I have 2 brothers and 4 sisters. I have one rabbit. I hopefully

> > I fit in here. I suffer from stress, depression and Autism.

> >

> > Susie

> >

> >

> >

> >

> > http://health.groups.yahoo.com/group/AffirmationstoDe-Stress

> >

> > A positive thinking, positive affirmations support group, discussing

> ways

> > to cope with the stresses of daily life. Come aboard! PJ and Gang

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Welcome to the group! Anyone who needs help in living

a postive lifestyle fits in! Anytime you want to

talk; we'll be listening!

Barbara

--- Susie wrote:

> Hello All,

>

> I am 25 and I'm from england in Leicester. I am a

> student studying

> admin level one.

>

> My hobbies are reading, sending emails, movies,

> chatting online and

> music. I have 2 brothers and 4 sisters. I have one

> rabbit. I hopefully

> I fit in here. I suffer from stress, depression and

> Autism.

>

> Susie

>

>

>

__________________________________________________

[Guest guest]

Welcome, !

I'm one of the co-moderators here and I've been kinda busy the last

couple of days so I'm sorry I haven't had a chance to respond sooner.

This is a great group of people and a lot of excellent ideas are shared

here so we hope you'll find just what you need. Feel free to share any

ideas of your own as well, as we ALL grow from helping each other.

Cheers!

Jace Carlton

Co-moderator - Affirmations to De-Stress

rene Garza wrote:

> I look forward to reading the posts. Thanks Stephaine

>

>

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

> Yahoo! Photos

> Ring in the New Year with Photo Calendars. Add photos, events,

> holidays, whatever.

>

>

[Guest guest]

Dear Jace, Thanks so much for answering my email. I look forward to reading the

posts.

Jace Carlton wrote: Welcome, !

I'm one of the co-moderators here and I've been kinda busy the last

couple of days so I'm sorry I haven't had a chance to respond sooner.

This is a great group of people and a lot of excellent ideas are shared

here so we hope you'll find just what you need. Feel free to share any

ideas of your own as well, as we ALL grow from helping each other.

Cheers!

Jace Carlton

Co-moderator - Affirmations to De-Stress

rene Garza wrote:

> I look forward to reading the posts. Thanks Stephaine

>

>

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

> Yahoo! Photos

> Ring in the New Year with Photo Calendars. Add photos, events,

> holidays, whatever.

>

>

[Guest guest]

Aloha , I am glad that you found this site. I also lived in Hawai'i and

relocated to Texas 2 years ago. Welcome from one kama'aina to another. Sorry to

hear that you have Stills Disease. I didn't know anyone else that had this

disease when I lived in Hawai'i. Would be nice to talk to you sometime about

home. I sure miss the beaches. The North Shore is probably having some great

waves about now. Did you live in Hale'iwa? Glad to hear that you found a really

good doctor in Austin. One of my best friend lives there in Austin and loves it.

She works at University of Texas. I think it is pretty laid back even if it is a

big city, but not like the North Shore. I am still in culture shock since moving

to Houston. Glad to here that you have a good doctor. Methotrexate worked well

for me. Moving that distance is very stressful too. It sent me into a major

flare-up. I hope you get settled in your new home and get to feeling better

soon. Take care. Mandy

wrote: I have just found your website and am

thrilled to see I am not alone

and not crazy. January of 2004 I was living on the North Shore of

Oahu, closing up my business and preparing for a trip to Uganda to

finish up with a move to Austin, Texas. This is when I woke up one

morning and couldn't move. Stress-related?...pretty clear.

My roomate forced me to see her family doctor (I have no health

insurance-and figured it'd last only a couple of days) who finally

settled on Rheumatic Fever as a diagnose. After 2 months of hobbling

around using only Naproxen for relief and penicillin to prevent any

new infection, I saw an internal medicine doctor that put me

immediatly on Prednisone. I thought life was back....until I began to

see all the side effects and found how tricky it was to ween off of

the steroids. I kept getting better, then falling backwards. My

parents took me (I'm 40 years old....geez) to see a Rheumatologist who

just confirmed I had rheumatic fever but couldn't tell me why I had

the sore throat, dry throat, continuing relapses, all the extra

sysmptoms,etc.. Just looked at me like I was crazy for asking and

coming to him so late (September). He just said, keep doing what

you're doing (even though it wasn't working). All my internet research

said the same thing as I was researching rheumatic fever so there was

no mention of any other therapy other than NSAIDs and steroids.

I decided to move to Austin in December no matter what since I never

know when the next relapse will be. Stress.....yes, it came back like

the first time when I couldn't move or take care of myself. This

actually was a good thing. My friends in Austin took care of me and

found an amazing doctor (incredibly difficult with no insurance and

very limited savings) who diagnosed the Stills Disease. This is my

4th week on Methotrexate and my 2nd week on Kineret.

So I am at the beginning but know I will have many questions and it is

really comforting knowing there are others that have already gone

through a lot of the same experiences (and that I'm not imagining the

other symptoms that 'didn't fit').

Even though it took a year to narrow down what was going on, I have to

say I've been really blessed with friends and parents and this new

doctor. I can't imagine where I'd be if I didn't have all the help.

Well, this post is much to long. Just wanted to say I am here and

thanks for providing a much needed space for support and education.

Take care,

karen

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

Hello

Welcome to our group. It did take a long time for you to get a diagnosis

which isn't at all unusual as you probably gather from other posts. Glad

you are receiving lots of help from docs.friends etc. hope we can be added

to your list.

Take care

Joan UK

new member

I have just found your website and am thrilled to see I am not alone

and not crazy. January of 2004 I was living on the North Shore of

Oahu, closing up my business and preparing for a trip to Uganda to

finish up with a move to Austin, Texas. This is when I woke up one

morning and couldn't move. Stress-related?...pretty clear.

My roomate forced me to see her family doctor (I have no health

insurance-and figured it'd last only a couple of days) who finally

settled on Rheumatic Fever as a diagnose. After 2 months of hobbling

around using only Naproxen for relief and penicillin to prevent any

new infection, I saw an internal medicine doctor that put me

immediatly on Prednisone. I thought life was back....until I began to

see all the side effects and found how tricky it was to ween off of

the steroids. I kept getting better, then falling backwards. My

parents took me (I'm 40 years old....geez) to see a Rheumatologist who

just confirmed I had rheumatic fever but couldn't tell me why I had

the sore throat, dry throat, continuing relapses, all the extra

sysmptoms,etc.. Just looked at me like I was crazy for asking and

coming to him so late (September). He just said, keep doing what

you're doing (even though it wasn't working). All my internet research

said the same thing as I was researching rheumatic fever so there was

no mention of any other therapy other than NSAIDs and steroids.

I decided to move to Austin in December no matter what since I never

know when the next relapse will be. Stress.....yes, it came back like

the first time when I couldn't move or take care of myself. This

actually was a good thing. My friends in Austin took care of me and

found an amazing doctor (incredibly difficult with no insurance and

very limited savings) who diagnosed the Stills Disease. This is my

4th week on Methotrexate and my 2nd week on Kineret.

So I am at the beginning but know I will have many questions and it is

really comforting knowing there are others that have already gone

through a lot of the same experiences (and that I'm not imagining the

other symptoms that 'didn't fit').

Even though it took a year to narrow down what was going on, I have to

say I've been really blessed with friends and parents and this new

doctor. I can't imagine where I'd be if I didn't have all the help.

Well, this post is much to long. Just wanted to say I am here and

thanks for providing a much needed space for support and education.

Take care,

karen

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended

to replace the services of a trained health professional or to be a

substitute for medical advice of physicians and/or other health care

professionals. The International Still's Disease Foundation is not engaged

in rendering medical or professional medical services. You should consult

your physician on specific medical questions, particularly in matters

requiring diagnosis or medical attention. The International Still's Disease

Foundation makes no representations or warranties with respect to any

treatment, action, application, medication or preparation by any person

following the information offered or provided within this support form.

ion by any person following the information offered or provided within

this support form.

[Guest guest]

Welcome ,

This is a wonderful group and you will find much support here. I too am in the

beginning stages of Stills and have found it very helpful and comforting to know

that all these wonderful people are here for whatever you may be going through.

Take care and here's wishing a pain free day for all.

Love, Sherry (Toledo, OH)

-------------- Original message from " " :

--------------

I have just found your website and am thrilled to see I am not alone

and not crazy. January of 2004 I was living on the North Shore of

Oahu, closing up my business and preparing for a trip to Uganda to

finish up with a move to Austin, Texas. This is when I woke up one

morning and couldn't move. Stress-related?...pretty clear.

My roomate forced me to see her family doctor (I have no health

insurance-and figured it'd last only a couple of days) who finally

settled on Rheumatic Fever as a diagnose. After 2 months of hobbling

around using only Naproxen for relief and penicillin to prevent any

new infection, I saw an internal medicine doctor that put me

immediatly on Prednisone. I thought life was back....until I began to

see all the side effects and found how tricky it was to ween off of

the steroids. I kept getting better, then falling backwards. My

parents took me (I'm 40 years old....geez) to see a Rheumatologist who

just confirmed I had rheumatic fever but couldn't tell me why I had

the sore throat, dry throat, continuing relapses, all the extra

sysmptoms,etc.. Just looked at me like I was crazy for asking and

coming to him so late (September). He just said, keep doing what

you're doing (even though it wasn't working). All my internet research

said the same thing as I was researching rheumatic fever so there was

no mention of any other therapy other than NSAIDs and steroids.

I decided to move to Austin in December no matter what since I never

know when the next relapse will be. Stress.....yes, it came back like

the first time when I couldn't move or take care of myself. This

actually was a good thing. My friends in Austin took care of me and

found an amazing doctor (incredibly difficult with no insurance and

very limited savings) who diagnosed the Stills Disease. This is my

4th week on Methotrexate and my 2nd week on Kineret.

So I am at the beginning but know I will have many questions and it is

really comforting knowing there are others that have already gone

through a lot of the same experiences (and that I'm not imagining the

other symptoms that 'didn't fit').

Even though it took a year to narrow down what was going on, I have to

say I've been really blessed with friends and parents and this new

doctor. I can't imagine where I'd be if I didn't have all the help.

Well, this post is much to long. Just wanted to say I am here and

thanks for providing a much needed space for support and education.

Take care,

karen

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

Welcome ;

My nickname is Melt here at the group and I have been diagnosed almost 30 years

ago now. I do have damaged joints but am overall in remission with medications.

Hope you find lots of friends here.

Good day, Melt

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

From:

I have just found your website and am thrilled to see I am not alone

and not crazy.

[Guest guest]

Hi Doc,

Welcome.

I will try to answer some of your questions. There are many kinds

of frequency generators. It depends what you want, what you need it

for and what you want to spend. There are so called " Rife " machines

but also look at Lakhovsky and the Multiple Wave Oscillator(MWO).

Check out e-Bay under Rife. Examples:Try the GB4000 (with amp?) and

accessories. This unit is considered one of the best and easiest to

use. There are others from Crane, Bare and more. Also Look at

vibemachine.com website for MWOinfo. Costs run from $500. on up. The

Vibe machine is $17000.

As for uses, Bob Beck's Silver Pulser will cure Hep C, AIDS and

Epstein Barr and so will any more expensive frequency generator. They

also do well with Cancer, Lyme Disease, etc. Look at the frequency

lists and see all that is done with these machines.

There are many other healing modalities that can be used or you can

just do the frequencies.

Send me an e-Mail and I will send you more info on the machines,

how to make one, useful web sites, the Beck Protocol, and more.

Go back and read the posts from the past month or two to learn more.

Namaste,

Sarasota, Fl.

>

> Dear All,

>

> I'd like to introduce myself, and then ask some questions of a

research nature.

>

> My name is Ian Shillington, a Naturopathic Doctor who specializes in

Herbal Remedies (everyone just calls me " Doc " for short . I own a

Herbal Manufacturing Company called Organic Solutions that

manufactures over 30 different Herbal Remedies and ship these world

wide. I also own the largest Herbal Remedies Yahoo site at:

> http://health.groups.yahoo.com/group/Herbal_Remedies/ with almost

5,000 members.

>

> Now, enough about me and blowing my own horn. LOL :-)

>

> I am a total newbie to Rife Technology but have heard some

tremendous stories about it and I'm here to learn all I can about this

amazing science. Please bear with my questions as I am very ignorant

in this area but am looking to learn all I can in order to add

something new and effective to my repertoire.

>

> These are my questions:

>

> 1. To date, I've only heard of two machines that are supposedly

very good = A. The BioSolutions Plus and; B. The Pro Wave by

Natural Energies.

> a. Which of these two are the best from the viewpoint of

efficacy, ease of use, durability, and cost???

> b. Is there another model (make) that is better than either of

these two, where can it be found, and at what cost???

>

> 2. Has anyone ever terminatedly handled Hep C; AIDS; Epstein Barr;

CMV; or Muscular Dystrophy using a Rife Machine???

>

> 3. Is there any other healing modality that works well and in

conjunction with Rife Tech???

>

> Many thanks in advance for those of you who take the time to answer

the above. It is appreciated.

>

> In Health and Love,

>

> Doc

>

> Doc Shillington

>

> Doc@...

>

>

[Guest guest]

Hi ufc;

I wanted to share my history a bit. At onset mine was very severe and was so

about the first three years and then gradually got better. Not well but better.

I'm now going on thirty years and yes, have had a few working but mostly not and

it hasn't been all bad. I love my crafts, sewing and artwork. Also reading.

Mostly I miss people every day but share a lot with the group here.

One of my doctors just recommended the gastric bypass this last month and told

me to research it but I haven't liked what I see so far. For me the risks seem

far too common and it is still a lifetime of radical changes and doctor

appointments. So I figure I'll try first making the radical changes myself.

What I'm feeling is if I'm not disciplined enough to do so myself, then I

wouldn't be very good at it with the surgery. These are just my opinions. Good

luck with your decisions and web MD has many good articles on it.

Hope your day is better, Melt

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

From: ufc_lovah

I am fat, and getting fatter. I can't seem to get off this pred no matter what

I do.

I've very slowly tapered down to around 2 mg and no matter what, I always

get hit with a huge flare. How do you all have jobs? I can't handle two

afternoons a week of school.

What kind of future is this? Is there any hope at all? because I can't see

it....

Has anyone had weightloss surgery? The LapBand in particular?

[Guest guest]

ufc-lovah,

Prednisone and lack of activity will make you fat, most of us are due to

that. I know one person in the group had a gastric bypass and had

complications. My doctors said there is no way in hell they would allow

that with this disease and the risk of complications and infection.

I am also not working and on disability,there are several in the group that

are, and some that work part-time, and some that struggle to work full-time,

and others who are well enough just to work. How long have you been on your

meds?? Maybe you need a different cocktail? Some of us however do get a

more chronic form of the disease and that is much harder to manage. WE are

all different and respond differently to different treatments. I highly

recommend getting into therapy as dealing with a chronic illness is very

draining and most suffer depression as well.

Good luck and feel free to ask more questions

Lynn

-- New Member

What's up yall? I'm 26, diagnosed w/ AOSD a year ago last december. I got

sick two years ago this month though.

Meds:

MTX

Kineret

Prednisone

Protonix

Vicoprophen

Welbutrin XL

Phenergan

I am fat, and getting fatter. I can't seem to get off this pred no matter

what I do.

I've very slowly tapered down to around 2 mg and no matter what, I always

get hit with a huge flare. I've been having my latest flare now that started

the

second week of December. I can't work, I had to drop out of school. I was

always still able to handle school. But I've been so sick everyday and I

just

couldn't force myself to be sick only on certain days.

How do you all have jobs? I can't handle two afternoons a week of school.

What kind of future is this? Is there any hope at all? because I can't see

it....

Has anyone had weightloss surgery? The LapBand in particular?

Thanks for any help....

xoxo

ufc_lovah

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

I would also check out my site www.fmswellness.com

click Icon Energy Wellness.com I have used this

machine along with herbal remedies and found it to be

very effective.

Good Luck

Love and Light

Ron NO. D. M. H.

Re: New Member

Hi Doc,

Welcome.

I will try to answer some of your questions. There are many kinds

of frequency generators. It depends what you want, what you need it

for and what you want to spend. There are so called " Rife " machines

but also look at Lakhovsky and the Multiple Wave Oscillator(MWO).

Check out e-Bay under Rife. Examples:Try the GB4000 (with amp?) and

accessories. This unit is considered one of the best and easiest to

use. There are others from Crane, Bare and more. Also Look at

vibemachine.com website for MWOinfo. Costs run from $500. on up. The

Vibe machine is $17000.

As for uses, Bob Beck's Silver Pulser will cure Hep C, AIDS and

Epstein Barr and so will any more expensive frequency generator. They

also do well with Cancer, Lyme Disease, etc. Look at the frequency

lists and see all that is done with these machines.

There are many other healing modalities that can be used or you can

just do the frequencies.

Send me an e-Mail and I will send you more info on the machines,

how to make one, useful web sites, the Beck Protocol, and more.

Go back and read the posts from the past month or two to learn more.

Namaste,

Sarasota, Fl.

>

> Dear All,

>

> I'd like to introduce myself, and then ask some questions of a

research nature.

>

> My name is Ian Shillington, a Naturopathic Doctor who specializes in

Herbal Remedies (everyone just calls me " Doc " for short . I own a

Herbal Manufacturing Company called Organic Solutions that

manufactures over 30 different Herbal Remedies and ship these world

wide. I also own the largest Herbal Remedies Yahoo site at:

> http://health.groups.yahoo.com/group/Herbal_Remedies/ with almost

5,000 members.

>

> Now, enough about me and blowing my own horn. LOL :-)

>

> I am a total newbie to Rife Technology but have heard some

tremendous stories about it and I'm here to learn all I can about this

amazing science. Please bear with my questions as I am very ignorant

in this area but am looking to learn all I can in order to add

something new and effective to my repertoire.

>

> These are my questions:

>

> 1. To date, I've only heard of two machines that are supposedly

very good = A. The BioSolutions Plus and; B. The Pro Wave by

Natural Energies.

> a. Which of these two are the best from the viewpoint of

efficacy, ease of use, durability, and cost???

> b. Is there another model (make) that is better than either of

these two, where can it be found, and at what cost???

>

> 2. Has anyone ever terminatedly handled Hep C; AIDS; Epstein Barr;

CMV; or Muscular Dystrophy using a Rife Machine???

>

> 3. Is there any other healing modality that works well and in

conjunction with Rife Tech???

>

> Many thanks in advance for those of you who take the time to answer

the above. It is appreciated.

>

> In Health and Love,

>

> Doc

>

> Doc Shillington

>

> Doc@...

>

>

[Guest guest]

welcome !!!!I have had this since 1972 and have had lots of remision

days weeks/years then there are the flarisions..not too bad but annoying...the

real flares really (rhymes with duck )....I grew up in NYC (hear my accent?

ha ha ha ) live near Philadelphia now but spent about 15 summers in

Maine...Mostly Moosehead lake area fishing for brown trout and hiking White Cap

Mountain. Love that beee uuuuuu teee ful state alot. Miss it!!! Simply,

miss it.............Feel well...you will meet a lot of nice people here Liz

from stown New Jersey 7 miles from Phillie. PS .. I like your diet

ideas...have recently tried to go on a diet similar for those with

gout...low purines..as my hands hurt these days and once in a while a finger

will feel

like someone took a hammer to it..a big hammer ...

[Guest guest]

Hi and welcome to this group. Seems like a lot of

people are in a flare right now (so am I), so don't

feel alone. I understand your frustration and I feel

the same way. Luckily, I am a stay at home mom and

don't have to work right now. I am 34, from Germany,

and I can't even keep up with my housework, college

and my 3 year old. So don't feel alone.

Hope you are better soon.

I have gained weight too from the steroids, just had

to take 30 mg again today (was down to 20) because I

was full of the rash this morning. I just eat

moderately so it doesn't get out of control.

Good luck

tatjana

--- ufc_lovah wrote:

> What's up yall? I'm 26, diagnosed w/ AOSD a year ago

> last december. I got

> sick two years ago this month though.

>

> Meds:

> MTX

> Kineret

> Prednisone

> Protonix

> Vicoprophen

> Welbutrin XL

> Phenergan

>

> I am fat, and getting fatter. I can't seem to get

> off this pred no matter what I do.

> I've very slowly tapered down to around 2 mg and no

> matter what, I always

> get hit with a huge flare. I've been having my

> latest flare now that started the

> second week of December. I can't work, I had to drop

> out of school. I was

> always still able to handle school. But I've been so

> sick everyday and I just

> couldn't force myself to be sick only on certain

> days.

>

> How do you all have jobs? I can't handle two

> afternoons a week of school.

> What kind of future is this? Is there any hope at

> all? because I can't see it....

>

> Has anyone had weightloss surgery? The LapBand in

> particular?

>

> Thanks for any help....

>

> xoxo

> ufc_lovah

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi UFC,

Welcome to the group. I work full time (actually more like 50-60

hours/week) now but for the first six months took a lot of sick

time. Like Barb, by the end of the week I'm beat and often find

myself wondering why I even try to do it... but I LOVE my job and it

truly changes people's lives. What's working for me is grabbing a

nap whenever and whereever I can.

I've found, but haven't had the will power or self discipline to try

it for more than a week or two at a time, that a low-carb, no red

meat diet works really well at alleviating some of the inflammation

and fatigue and also lets you lose weight even when on prednisone.

in Maine

>

> What's up yall? I'm 26, diagnosed w/ AOSD a year ago last

december. I got

> sick two years ago this month though.

>

> Meds:

> MTX

> Kineret

> Prednisone

> Protonix

> Vicoprophen

> Welbutrin XL

> Phenergan

>

> I am fat, and getting fatter. I can't seem to get off this pred no

matter what I do.

> I've very slowly tapered down to around 2 mg and no matter what,

I always

> get hit with a huge flare. I've been having my latest flare now

that started the

> second week of December. I can't work, I had to drop out of

school. I was

> always still able to handle school. But I've been so sick everyday

and I just

> couldn't force myself to be sick only on certain days.

>

> How do you all have jobs? I can't handle two afternoons a week of

school.

> What kind of future is this? Is there any hope at all? because I

can't see it....

>

> Has anyone had weightloss surgery? The LapBand in particular?

>

> Thanks for any help....

>

> xoxo

> ufc_lovah

>

[Guest guest]

;

Just wanted to chime in that my rheumatologist said to avoid red meat when I

asked about dieting. Melt

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

, that a low-carb, no red

meat diet works really well at alleviating some of the inflammation

and fatigue and also lets you lose weight even when on prednisone.

in Maine

[Guest guest]

Hello ufc_lovah;

A hearty welcome to our new member! This is a wonderful group of people

you've joined. Everyone is very resourceful, and while we cannot claim to have

all the answers, we have quite a few. The members on this site are very warm

and friendly. I'm sorry to hear you've been diagnosed, but very glad you found

our site.

My name is Barbara, and I've had Stills Disease for over 17 years. The first

10 were misdiagnosed and treated as though I had Lupus. I was (mis)diagnosed

two months prior to my 30th birthday. Various things had been thought about my

30th birthday at the onset of my disease. When I arrived at my 30th it was with

joy at having the privilege of being able to see another birthday. I'm 47 now,

and a Granny 6 x over (with a 7th on the way) and never again has a birthday

been thought of with anything with joy.

The dose of mtx and Kineret should help you ease off the prednisone. Perhaps

you can speak with your Rheumatologist about giving you a higher dose of

methotrexate. Are you taking Folic Acid with the mtx? If blood test results

show the mtx and Kineret are not working, then perhaps you need to try a new

medication.

Most of us have been the fat route. Some are still there, some of us drift in

and out. I went from being a workout nut, raising kids, and going to college to

being bedridden, fat, and having my husband come home to take care of the kids

and his own dinner. After a couple years, even though misdiagnosed, they found

a drug that kept my symptoms in check. I did go back to college (took my fat

with me), graduated, and worked as a RN for several years. I didn't choose to

retire. A flare put me on permanent disability. But, not a thing would have

been changed.

Through this group I learned stress is a big factor, in fact, a trigger when

it comes to having flares. You have to remember it isn't just negative stress

that can cause a flare. Our body responds to positive stress, too.

The way we cope is different with most members. I think most will agree that

the number one thing to do when feeling unwell or stressed, is to rest, rest,

rest. Getting good sleep at night is important. Waking up frequently isn't

good. You need a full night's sleep and a nap during the day doesn't hurt,

either!

I never would have considered surgery for weight reduction, even though my

weight caused so much grief. I opted to do something else. My goal was to eat

to improve the way I feel, not so much the way I look. I'd wanted to become a

Vegan for years (okay Stilligan carnivores, patience, please ...lol!). I don't

have anything against those who eat meat. But, for years the idea of eating

meat had become a personal, increasing problem. In my family, high cholesterol

comes from our parents and grandparents. It has little to do with weight or

exercise. I thought it could be improved by diet changes, and it did improve,

but I'm still on medication for high cholesterol. If you want info. on how I

lost 70 pounds, let me know. The gang has heard it enough! I wouldn't think

less of a person who had surgery for weight loss. But, I'd want them to be sure

their health could withstand the surgery.

YES, there is hope! We learn about this disease, my goodness, we teach many

medical professionals about this disease. There is a wealth of information on

our site! We become our best advocates. I know the future doesn't look rosy

right now, but take time to appreciate the little things in life. We learn to

count the Blessings we do have, and lean on this group when we need help. Good

times and fun does come around. Some people just go into remission. We have

many members who have gone into a very long, or permanent remission.

For now, ask a lot of questions of the group and study this disease!

Gentle hugs,

Barbara Gardner

Ventura, CA

What's up yall? I'm 26, diagnosed w/ AOSD a year ago last december. I got

sick two years ago this month though.

Meds:

MTX

Kineret

Prednisone

Protonix

Vicoprophen

Welbutrin XL

Phenergan

I am fat, and getting fatter. I can't seem to get off this pred no matter what I

do.

I've very slowly tapered down to around 2 mg and no matter what, I always

get hit with a huge flare. I've been having my latest flare now that started the

second week of December. I can't work, I had to drop out of school. I was

always still able to handle school. But I've been so sick everyday and I just

couldn't force myself to be sick only on certain days.

How do you all have jobs? I can't handle two afternoons a week of school.

What kind of future is this? Is there any hope at all? because I can't see

it....

Has anyone had weightloss surgery? The LapBand in particular?

Thanks for any help....

xoxo

ufc_lovah

[Guest guest]

Dear and All who answered up,

I was a little overwhelmed with both list and private comms on this, so it'll

take a bit to look at it all and answer up.

This is just a quick note to thank all of you for your time and consideration.

I appreciate the responses, input and all your knowledge. What a great group!!!

I'll answer more detailed letters later.

All the best,

Doc

Doc Shillington

Doc@...

Re: New Member

Hi Doc,

Welcome.

I will try to answer some of your questions. There are many kinds

of frequency generators. It depends what you want, what you need it

for and what you want to spend. There are so called " Rife " machines

but also look at Lakhovsky and the Multiple Wave Oscillator(MWO).

Check out e-Bay under Rife. Examples:Try the GB4000 (with amp?) and

accessories. This unit is considered one of the best and easiest to

use. There are others from Crane, Bare and more. Also Look at

vibemachine.com website for MWOinfo. Costs run from $500. on up. The

Vibe machine is $17000.

As for uses, Bob Beck's Silver Pulser will cure Hep C, AIDS and

Epstein Barr and so will any more expensive frequency generator. They

also do well with Cancer, Lyme Disease, etc. Look at the frequency

lists and see all that is done with these machines.

There are many other healing modalities that can be used or you can

just do the frequencies.

Send me an e-Mail and I will send you more info on the machines,

how to make one, useful web sites, the Beck Protocol, and more.

Go back and read the posts from the past month or two to learn more.

Namaste,

Sarasota, Fl.

>

> Dear All,

>

> I'd like to introduce myself, and then ask some questions of a

research nature.

>

> My name is Ian Shillington, a Naturopathic Doctor who specializes in

Herbal Remedies (everyone just calls me " Doc " for short . I own a

Herbal Manufacturing Company called Organic Solutions that

manufactures over 30 different Herbal Remedies and ship these world

wide. I also own the largest Herbal Remedies Yahoo site at:

> http://health.groups.yahoo.com/group/Herbal_Remedies/ with almost

5,000 members.

>

> Now, enough about me and blowing my own horn. LOL :-)

>

> I am a total newbie to Rife Technology but have heard some

tremendous stories about it and I'm here to learn all I can about this

amazing science. Please bear with my questions as I am very ignorant

in this area but am looking to learn all I can in order to add

something new and effective to my repertoire.

>

> These are my questions:

>

> 1. To date, I've only heard of two machines that are supposedly

very good = A. The BioSolutions Plus and; B. The Pro Wave by

Natural Energies.

> a. Which of these two are the best from the viewpoint of

efficacy, ease of use, durability, and cost???

> b. Is there another model (make) that is better than either of

these two, where can it be found, and at what cost???

>

> 2. Has anyone ever terminatedly handled Hep C; AIDS; Epstein Barr;

CMV; or Muscular Dystrophy using a Rife Machine???

>

> 3. Is there any other healing modality that works well and in

conjunction with Rife Tech???

>

> Many thanks in advance for those of you who take the time to answer

the above. It is appreciated.

>

> In Health and Love,

>

> Doc

>

> Doc Shillington

>

> Doc@...

>

>

[Guest guest]

Hi Beth

Could you keep me informed about your plans for an AOSD discussion board.

Ta

Roy from Rugby (England)

[Guest guest]

Beth;

for all real propeses I treat this place like a family and say whats on my

mind and yes I forget to place the ot in my post or remove the old post but

the main parts i am dealing with . we all make mistakes I know I am the king

of them . now i am no one here but a member and this is how I deal with it .

yes I have steped out of line even and self band my self but this was at a

time in life i was also dealing with way to much for any one at one time .

so post as we are your freinds as that is what we all are and when you have

information to pass on pass it on but this is a safe zone fore us here a

place were understanding is king for the most part I belive

hugs all and lets kick some dragon butt okay!

Marty

[Guest guest]

*Hi Beth and Welcome to the Group,*

*It is all confusing at first. Just give yourself some time and things will

fall into place. I am fairly new here myself and it is a learning

experience.*

*I am sorry you are dealing with so much pain. It's a key factor in our

lives I'm afraid. I hope that you will find the right mix of meds.*

*to bring you some relief.*

*We all strive to do what the rules say but with this dragon and the mix of

drugs we take sometimes we forget to follow it to the letter. I guess we can

say it's us being human.*

*Please feel free to jump in and post as often as you can. I personally post

when I am having a OK day. Some days I don't at all--depends on how rotten

I'm feeling.*

*Welcome again and don't worry. You'll get the hang of the digest thing real

soon.*

**

*, Oregon USA*

>

> I am 43, in England near Birmingham. My name is Beth I am married no kids.

> Just diagnosed with AOSD.

> The worst part for me is the unremitting pleuritic pain, for which

> nothing has been helpful. I am at my wits end with this and really am

> not coping at all.

> This has been going on since January.

>

**

--

> SPEEDY :-)

>

>

> " Love endures all things. "

>

[Guest guest]

Beth,

I'm one of the guilty party's regarding the recent rash of non-

sanctioned OFF TOPIC posts - specifically the ones regarding high

pitched shrill sounds in the ears. My original post was very much ON

TOPIC, however I didn't realize exactly how I worded something and it

was taken in a very amusing way by some. When I looked back at my

original post, actually, I thought it was hilarious (still do

*lol*). I can only speak for myself here, but any bit of amusement I

can partake of these days is more than welcome. So....oops, my

bad.... *must make mental note to watch those subject lines*

Barbara in Houston

>

> I am 43, in England near Birmingham. My name is Beth I am married

no kids.

> One query tho- in reading the digests, it seems there is a lot of

OT

> stuff without OT in the subject, and there are a lot of posts that

are

> repeated over and over in replies-