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Dear Lynn,

That's so neat that you may have a granddaughter named ! It seems the

name is making a comeback..when I was growing up, I never knew anyone else

with my name!!

" EM " :)

>From: Lynn <CEN32195@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Hi

>Date: Fri, 03 Sep 1999 15:57:42 -0700

>

>From: Lynn <CEN32195@...>

>

>My daughter is going to name her baby if it is a girl of course, and

>Luke

>if it is a boy. We will know in October. Just thought i would share this

>with

>you. Lynn aih

>

>emily simpson wrote:

>

> > From: " emily simpson " <esimpson7@...>

> >

> > Dear ,

> >

> > Your doctors have won for saying the stupidest things I've ever heard!

>First

> > off, your symtoms seem to me to be classic AIH. Second of all, who is

>that

> > doctor to ORDER you to take tranquilizers when he doesn't even know what

> > Autoimmune Hepatitis is?! I don't see how he could have you committed

>when

> > it can be proven that you know what you're talking about. You are SO

>not

> > crazy, and I am so sorry you had to endure that. I know a normal

>doctor's

> > appointment can be upsetting to me. Something like what you had to

>endure

> > (even a fraction) would put me over the edge I think! Please just know

> > they're both severely ignorant and unprofessional. Take care, and find

>an

> > outlet to vent all that out!

> >

> >

> >

> > >From: La7de@...

> > >Reply- onelist

> > > onelist

> > >Subject: Re: [ ] Hi

> > >Date: Fri, 3 Sep 1999 07:26:18 EDT

> > >

> > >From: La7de@...

> > >

> > >Hi all,

> > >

> > >Boy do I need a dose of your sanity and support today! I had the most

> > >horrible doctors visits yesterday, I'm still in shock.

> > >

> > >My first visit was for a second opinion, mainly because my first GI

>didn't

> > >seem concerned and getting answers/information from him was like

>pulling

> > >teeth. So this time I tried a woman GI. She was very thourough in her

> > >exam

> > >and with asking me questions. I had also brought her a list of my

> > >symptoms,

> > >like fatigue, muscle/joint pain/constant low grade

>fever/depression/nausea/

> > >dry & sore eyes/ URQ pain etc.... She said they were not symptoms of

>AIH,

> > >and that my numbers AST-147,ALKP-358, ANA-1:80 were not suggestive of

>AIH.

> > >Even with the Mayo clinic biopsy, which said " Chronic active hepatitis

> > >(grade

> > >2 of 4), with periportal fibrosis (stage 2 of 4) " Also,

>portal/periportal

> > >inflammation with piecemeal necrosis.

> > >

> > >She ordered a few more blood tests, but figured they wouldn't convince

>her

> > >any differently. Bottom line, she said all I needed was to " get off my

> > >butt

> > >and start exercising and quit smoking " . She didn't seem to care that I

> > >didn't have the energy to do that after putting all the energy I do

>have

> > >into

> > >working all day. I left there stunned. Then, because she had been

>running

> > >45 min late, I had to rush to my new psychiatrists appointment and got

> > >there

> > >late, but they said it was ok.

> > >

> > >The psych's nurse took down some facts, then I finally got to see the

> > >doctor.

> > > OH MY GOD, I have never run into a man like this before holding a

> > >professional degree. The reason I went to him was because my first GI

> > >wanted

> > >to make sure my depression was stable before they put me on prednisone,

> > >since

> > >it can also cause depression. So like a fool, I showed him my list of

> > >symptoms from AIH. He was furious that I had been in counseling for 18

> > >months (I had been ok before this run around with trying to get my

> > >diagnosis

> > >and I simply couldn't afford it). He said that just because I had a

> " bad

> > >life " didn't mean that there was anything he could do for me. I tried

>to

> > >tell him about the AIH diagnosis from Mayo, and he said is it Hep A, B

>or

> > >C?

> > >I said neither, it was autoimmune hep, and he hollered that there were

>only

> > >three choices A, B or C! I guess I made the mistake of trying to

>explain

> > >that autoimmune hep is none of those, because he got real mad and said

>he

> > >was

> > > " this close to Baker acting me " !!!!!!!! But that if I did what he said

>he

> > >would give me a chance!!!! So I had to make an appt with his

>psychologist

> > >for later today. Can you believe it??? He also gave me a RX for

> > >tranquilizers that I MUST take!

> > >

> > >He scared the H*** out of me, I could just picture the cops coming and

> > >dragging me off to the mental institution! I'm not crazy, really I'm

>not!

> > >Yes, I was still reeling from the GI's visit, and down over that but

>come

> > >on!

> > >

> > >

> > >I don't know what to do next!?!! I don't know what he can do to me,

>can I

> > >fire him without being Baker acted? (Baker acted is being committed

> > >against

> > >my will). I went for the new lab tests, so I'll see what they say, and

>I'm

> > >too scared not to see his psychologist today, but now I'm not only

>lost,

> > >I'm

> > >terrified!

> > >

> > >Anyone have any ideas???

> > >

> > > (AIH)

> > >Florida

> > >

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

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I think it is neat too. When we named , that was an uncommon " old " name,

now it is very popular. is such a pretty name. Lynn aih

emily simpson wrote:

> From: " emily simpson " <esimpson7@...>

>

> Dear Lynn,

>

> That's so neat that you may have a granddaughter named ! It seems the

> name is making a comeback..when I was growing up, I never knew anyone else

> with my name!!

>

> " EM " :)

>

> >From: Lynn <CEN32195@...>

> >Reply- onelist

> > onelist

> >Subject: Re: [ ] Hi

> >Date: Fri, 03 Sep 1999 15:57:42 -0700

> >

> >From: Lynn <CEN32195@...>

> >

> >My daughter is going to name her baby if it is a girl of course, and

> >Luke

> >if it is a boy. We will know in October. Just thought i would share this

> >with

> >you. Lynn aih

> >

> >emily simpson wrote:

> >

> > > From: " emily simpson " <esimpson7@...>

> > >

> > > Dear ,

> > >

> > > Your doctors have won for saying the stupidest things I've ever heard!

> >First

> > > off, your symtoms seem to me to be classic AIH. Second of all, who is

> >that

> > > doctor to ORDER you to take tranquilizers when he doesn't even know what

> > > Autoimmune Hepatitis is?! I don't see how he could have you committed

> >when

> > > it can be proven that you know what you're talking about. You are SO

> >not

> > > crazy, and I am so sorry you had to endure that. I know a normal

> >doctor's

> > > appointment can be upsetting to me. Something like what you had to

> >endure

> > > (even a fraction) would put me over the edge I think! Please just know

> > > they're both severely ignorant and unprofessional. Take care, and find

> >an

> > > outlet to vent all that out!

> > >

> > >

> > >

> > > >From: La7de@...

> > > >Reply- onelist

> > > > onelist

> > > >Subject: Re: [ ] Hi

> > > >Date: Fri, 3 Sep 1999 07:26:18 EDT

> > > >

> > > >From: La7de@...

> > > >

> > > >Hi all,

> > > >

> > > >Boy do I need a dose of your sanity and support today! I had the most

> > > >horrible doctors visits yesterday, I'm still in shock.

> > > >

> > > >My first visit was for a second opinion, mainly because my first GI

> >didn't

> > > >seem concerned and getting answers/information from him was like

> >pulling

> > > >teeth. So this time I tried a woman GI. She was very thourough in her

> > > >exam

> > > >and with asking me questions. I had also brought her a list of my

> > > >symptoms,

> > > >like fatigue, muscle/joint pain/constant low grade

> >fever/depression/nausea/

> > > >dry & sore eyes/ URQ pain etc.... She said they were not symptoms of

> >AIH,

> > > >and that my numbers AST-147,ALKP-358, ANA-1:80 were not suggestive of

> >AIH.

> > > >Even with the Mayo clinic biopsy, which said " Chronic active hepatitis

> > > >(grade

> > > >2 of 4), with periportal fibrosis (stage 2 of 4) " Also,

> >portal/periportal

> > > >inflammation with piecemeal necrosis.

> > > >

> > > >She ordered a few more blood tests, but figured they wouldn't convince

> >her

> > > >any differently. Bottom line, she said all I needed was to " get off my

> > > >butt

> > > >and start exercising and quit smoking " . She didn't seem to care that I

> > > >didn't have the energy to do that after putting all the energy I do

> >have

> > > >into

> > > >working all day. I left there stunned. Then, because she had been

> >running

> > > >45 min late, I had to rush to my new psychiatrists appointment and got

> > > >there

> > > >late, but they said it was ok.

> > > >

> > > >The psych's nurse took down some facts, then I finally got to see the

> > > >doctor.

> > > > OH MY GOD, I have never run into a man like this before holding a

> > > >professional degree. The reason I went to him was because my first GI

> > > >wanted

> > > >to make sure my depression was stable before they put me on prednisone,

> > > >since

> > > >it can also cause depression. So like a fool, I showed him my list of

> > > >symptoms from AIH. He was furious that I had been in counseling for 18

> > > >months (I had been ok before this run around with trying to get my

> > > >diagnosis

> > > >and I simply couldn't afford it). He said that just because I had a

> > " bad

> > > >life " didn't mean that there was anything he could do for me. I tried

> >to

> > > >tell him about the AIH diagnosis from Mayo, and he said is it Hep A, B

> >or

> > > >C?

> > > >I said neither, it was autoimmune hep, and he hollered that there were

> >only

> > > >three choices A, B or C! I guess I made the mistake of trying to

> >explain

> > > >that autoimmune hep is none of those, because he got real mad and said

> >he

> > > >was

> > > > " this close to Baker acting me " !!!!!!!! But that if I did what he said

> >he

> > > >would give me a chance!!!! So I had to make an appt with his

> >psychologist

> > > >for later today. Can you believe it??? He also gave me a RX for

> > > >tranquilizers that I MUST take!

> > > >

> > > >He scared the H*** out of me, I could just picture the cops coming and

> > > >dragging me off to the mental institution! I'm not crazy, really I'm

> >not!

> > > >Yes, I was still reeling from the GI's visit, and down over that but

> >come

> > > >on!

> > > >

> > > >

> > > >I don't know what to do next!?!! I don't know what he can do to me,

> >can I

> > > >fire him without being Baker acted? (Baker acted is being committed

> > > >against

> > > >my will). I went for the new lab tests, so I'll see what they say, and

> >I'm

> > > >too scared not to see his psychologist today, but now I'm not only

> >lost,

> > > >I'm

> > > >terrified!

> > > >

> > > >Anyone have any ideas???

> > > >

> > > > (AIH)

> > > >Florida

> > > >

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

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Hi everyone, I need to unsubscribe for a while, but will be back. Thanks

for your nice welcome and all the great help. Good luck and great health to

everyone. Lynn aih

Elena P wrote:

> From: Elena P <brit71@...>

>

> Thank you sooo much, you guys make me feel so good and

> give me a lot of confidence!

>

> --- La7de@... wrote:

> > From: La7de@...

> >

> > Elena,

> >

> > We all have so much faith in you that you don't need

> > luck! Go get em honey.

> > You do have all our prayers...

> >

> > (AIH)

> >

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

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  • 1 month later...

Actually, I would like to expand on what Charlie wrote;

Elliot dous not know that he has JRA- but he does know that he takes

medication so that he won't have pain in his legs and wrists and fingers. His

ped. rheum. has frequently used the word arthritis with him, although I don't

think he would know to say that he has arthritis. While he used to ask why he

takes all these meds he now asks when it will be finished. I try to deal with

each issue as it comes up. Elliots brother is aware that his brother is

different that he goes for blood tests and to the Dr. and takes meds. but

hasn't questioned us as to why. I imagine he takes his cues from us and does

not make any discussion about it. When Elliot was first diagnosed I spoke to

another mom whose child had JRA and " burned out " 15 months later. She was

the one who advised me not to tell people. She said many are ignorant and

even with explanations kept their child away from her daughter( did they

think it was contagious?) My pediatrician also has advised me to tell only

as the need arises. He feels that subconsciously a teacher may limit his

activity and certainly on the preschool level if a kid wants to sit out of

an activity for a few minutes no one would question him. If there would be a

medical emergency it is on his file and the school would be calling either

myself or the pediatrician anyway.

I actually did tell his teacher this year. At meet the teacher night I

noticed a growth chart on the wall. Elliot is very aware that he is small . I

didnt want that in 6 months he be more aware that he may be the only one

that doesn't grow.

We all hope and pray that the JRA burns out and we can put it behind us ,

but until then I prefer to deal with the issues as thay come up instead of

sitting down and giving a whole explanation and lecture to a 5 yr old

Rena

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When I was first dxed I knew about it also, my mom didn't have much choice on

keeping it from me. But I was also in the hospital for nine months when I was

first dxed. I do have some regrets that kids at school knew about it, but that

was only a small group.

My webpages:

http://fadedjeans.com/jraworld

http://www.bmi.net/acnelson

Reach me by ICQ. ICQ# 34033888

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

Visit my homepage for a list of sites with info on childhood arthritis:

http://www.geocities.com/Heartland/Village/8414/

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

Click Here

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

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My Rheumatoligist wanted me to tell all of Mandy's teachers about her JRA,

so that they would understand what she was going through. You eventually

need to inform them. They have a great pamphlet out called, when your

student has arthritis. When Mandy is having a tough day, and can't move as

fast, if she is late to class, she will not get in trouble. Also, because

she has it in her elbows, she keeps a set of books at home. These things are

important, but it is up to the individual families. It was easier not to

tell her teachers when she was younger, but not anymore. They need to

understand her. Did you know they are passing a law, that allows children

with JRA, to take all of the time they need, on their SATs? It is hard to

sit for a long period of time, so here they can get up and stretch a little

in between. Take care, Janet

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I as well told s teachers all about and that she may have bad

times I chose to go that rout due to the fact that unlike a lot of the kids

in here is inverted she hates to be around any body ,and yes she has

been very pampered so we sent her to school in hopes of braking her of some

of these bad habits we have allowed her to fall into> I also wanted the

teachers to understand that she will not always be able to play on the

swings if she does not feel well and that if she has a hard time getting off

the floor a little nudge will go along way > I as well gave the teacher the

pamphlet about Jra ,and I also printed up some thing from the group that I

thought would be helpful

>From: " Janet & Gilbert Moyer " <gjam@...>

>Reply- onelist

>< onelist>

>Subject: Re: [ ] Hi

>Date: Thu, 28 Oct 1999 07:47:00 -0500

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>From: " Janet & Gilbert Moyer " <gjam@...>

>

>My Rheumatoligist wanted me to tell all of Mandy's teachers about her JRA,

>so that they would understand what she was going through. You eventually

>need to inform them. They have a great pamphlet out called, when your

>student has arthritis. When Mandy is having a tough day, and can't move as

>fast, if she is late to class, she will not get in trouble. Also, because

>she has it in her elbows, she keeps a set of books at home. These things

>are

>important, but it is up to the individual families. It was easier not to

>tell her teachers when she was younger, but not anymore. They need to

>understand her. Did you know they are passing a law, that allows children

>with JRA, to take all of the time they need, on their SATs? It is hard to

>sit for a long period of time, so here they can get up and stretch a little

>in between. Take care, Janet

>

>>Visit my homepage for a list of sites with info on childhood arthritis:

>http://www.geocities.com/Heartland/Village/8414/

>

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wrote: When I was first dxed I knew about it also, my mom didn't

have much choice on keeping it from me. But I was also in the hospital

for nine months when I was first dxed. I do have some regrets that kids

at school knew about it, but that was only a small group.

Hi ,

I don't mean to get too personal so if you'd rather not get into it,

I'll understand ... but I was wondering if maybe you could expand a

little on what your feelings were about the kids at school knowing about

your JRA? There may be new issues for us next year, as Josh enters

middle school. I'd like to be well prepared for them, as much as that's

possible. You didn't mind about your close friends knowing though,

right?

Take care,

Georgina

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Hi,

I told Josh's school about the JRA, too. And brought in brochures from

the Arthritis Foundation and info from the rheumatologists. Even

arranged for them to write up an individualized educational plan, after

he had had JRA for 2 years. I thought, in the beginning, well ... it

might just burn itself out so there's no need to make a big deal about

it but realized later that it was in his best interests that the school

be fully informed. Nurse, teachers and principal/v.p. At the beginning

of the year, they usually do a few assignments to get to know one

another, telling a bit about themselves. Since first grade, Josh has

always mentioned things like sometimes he doesn't feel good in the

morning becuase of his arthritis, or that his one wish would be for his

JRA to go away. So even his classmates have always known about it. Their

school is really good about integrating children with special health

needs, so he's had deaf classmates, an autistic classmate, two

classmates with downs syndrome, and a couple kids with ADDH. There's

also a few students there who are wheelchair bound, due to their

disabilities. It's pretty much accepted that people have different types

of health concerns and yet are still accepted as being 'normal' kids.

Last weekend I got a phone call at home from his home room teacher. She

was calling to tell me about a little surprise. Josh was picked to be

the Surfer of the Month. And every month, the child picked in the 5th

grade has a little write up in the school newsletter. His teacher wanted

to read to me what she had written and ask my permission to mention

Josh's JRA. She didn't want him to be embarrassed. She also didn't want

to tell Josh about the award yet. Most times I'd just go and ask him.

This time, I had to make the judgement call myself. I told her to go

ahead with what she'd written. The only thing she said about JRA was

that despite sometimes being sore or stiff, or not feeling well, he

doesn't let anything interfere with his being a great kid who excels in

his school work... not even his JRA.

Josh is not ashamed or embarrassed about his illness but he is very

proud to have gotten on the Honor Roll again and to be known as a good

student who is a positive role model for others! He was really happy to

read the story about him, when the newsletter came out.

Take care,

Georgina

SHANNON MARTINO wrote:

>

> From: " SHANNON MARTINO " <shancna@...>

>

> I as well told s teachers all about and that she may have bad

> times I chose to go that rout due to the fact that unlike a lot of the kids

> in here is inverted she hates to be around any body ,and yes she has

> been very pampered so we sent her to school in hopes of braking her of some

> of these bad habits we have allowed her to fall into> I also wanted the

> teachers to understand that she will not always be able to play on the

> swings if she does not feel well and that if she has a hard time getting off

> the floor a little nudge will go along way > I as well gave the teacher the

> pamphlet about Jra ,and I also printed up some thing from the group that I

> thought would be helpful

>

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Georgina

Hello, I didn't have any trouble with my close friends they understood what I

was going through. And they were there for me when I needed someone. Middle

school and Jr. High were my toughest years in school. At this time in my life I

was in a wheel chair for most of the time. There is always a group of kids in a

school that thinks they are better then anyone. I got picked on alot during

these years. There were times that I didn't even want to go to school because

of the kids always picking on me. I had no real way of defending myself since I

was in a wheel chair. There was times that I felt I didn't belong there. Most

of the time I would just go and sit somewhere away from everyone like out in the

field. I feel that my depression was partly brought on by the kids picking on

me in school. These years we also hard on me due to that we had to move from

walla walla to Oak Harbor so that we could closer to my doctors in Seattle. So

it was a whole group of new kids. I feel if we had stayed in walla walla I

wouldn't of gone through half the problems I did in Oak Harbor. But I can

happily say that last part of my freshmen year the kids that were picking on me

stopped right after I had both of my knees replaced and relizedd that I could

walk. Alot of my problems at school could of been stopped but I kept them to

myself and didn't let anyone know about them.

If you have anymore question or if anyone else do just feel free to ask. I am

here to help you guys out.

My webpages:

http://fadedjeans.com/jraworld

http://www.bmi.net/acnelson

Reach me by ICQ. ICQ# 34033888

Re: [ ] Hi

wrote: When I was first dxed I knew about it also, my mom didn't

have much choice on keeping it from me. But I was also in the hospital

for nine months when I was first dxed. I do have some regrets that kids

at school knew about it, but that was only a small group.

Hi ,

I don't mean to get too personal so if you'd rather not get into it,

I'll understand ... but I was wondering if maybe you could expand a

little on what your feelings were about the kids at school knowing about

your JRA? There may be new issues for us next year, as Josh enters

middle school. I'd like to be well prepared for them, as much as that's

possible. You didn't mind about your close friends knowing though,

right?

Take care,

Georgina

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

Visit my homepage for a list of sites with info on childhood arthritis:

http://www.geocities.com/Heartland/Village/8414/

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

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

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Hi ,

Thanks! I guess having a chronic illness coupled with the regular

stressors of being a teenager can make for some difficult times. The

teasing must have been hard to deal with but you proved you were a

better person than them, by not fighting back. Even if the only reason

you didn't fight back was because you were in a wheel chair at the time

:-)

I guess moving can be hard, when you have a group of people you feel

connected to and then have to leave and start over again, getting to

know new people.

I guess only time will tell, but I'm sure we'll have some new issues to

deal with as Josh starts middle school next year. A new, larger campus.

Stairs and lockers. Changing rooms for classes. He is happy about one

thing in particular. Most of the neighborhood children here where we

live go to Kahului School. He and his sister go to Lihikai. So he's had

friends from school, and a seperate group of friends from our

neighborhood, close to home. Next year all of the kids go to the same

school, so he'll be seeing lots of friends at school each day. I sure

hope we can get through the transition well.

Thanks for explaining things. I do appreciate all your help and input!

Take care,

Georgina

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  • 1 month later...

Hello and welcome to the list. We discussed parasights and worms not long

ago. Several books state that you can not get rid of candidasis unless you

get rid of the parasights and worms. I've read Hulda s book on getting

rid of the polutants in our lives besides, parasights and worms. Check it

out of the liabrary. Myra

Hi

From: KITA@...

Hi Guys: Let me introduce myself by saying: I'am a regular, aver-

age person. I'am not famous, nor am I a great speller. I'am not

here to talk about religion, music, sex (unless it pertains to my health)

But I would like very much to benefit from you guys, whoever you are..

If your successfull or not. If you know how to improve health then I

would imagine you belong on this forum. As for me I'am learning, and

eager to do so. So I would like to ask a question. How can someone

remain a vegetarian and still get enough protein? I have read alot

of contraversy on this subject. Do you need to take supplements?

Also does anybody know if tapeworms really do grow in the human body

I mean, maybe I'am ignorant, but please tell me is this really true..

Anybody know of any related websites on tapeworm? Thanx, Georgie

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In a message dated 12/11/99 9:35:33 AM Central Standard Time, KITA@...

writes:

<< Hi Guys: Let me introduce myself by saying: I'am a regular, aver-

age person. I'am not famous, nor am I a great speller. I'am not

here to talk about religion, music, sex (unless it pertains to my health)

But I would like very much to benefit from you guys, whoever you are.

If your successfull or not. If you know how to improve health then I

would imagine you belong on this forum. As for me I'am learning, and

eager to do so. So I would like to ask a question. How can someone

remain a vegetarian and still get enough protein? I have read alot

of contraversy on this subject. Do you need to take supplements?

Also does anybody know if tapeworms really do grow in the human body

I mean, maybe I'am ignorant, but please tell me is this really true.

Anybody know of any related websites on tapeworm? Thanx, Georgie

>>

~~~~~~~~~~~~

Hi Georgie,

We vegetarians get our protein the same way a horse, mule or cow gets theirs

from

the greens in the field. Ever wander why animals have the scoures in the

spring?

the greens are cleaning them out from all the stuff they ate all winter.(mega

grains

and dead hay)

The amino acids are the block builders in proteins so eat lots of greens and

take green drinks such as barley green, best of greens. or your choice.

Edith

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Also Georgie, every food has a bit of protein in it, yes even celery! Protein

defeciency should not be a problem.

Es9525@... wrote:

In a message dated 12/11/99 9:35:33 AM Central Standard Time, KITA@...

writes:

<< Hi Guys: Let me introduce myself by saying: I'am a regular, aver-

age person. I'am not famous, nor am I a great speller. I'am not

here to talk about religion, music, sex (unless it pertains to my health)

But I would like very much to benefit from you guys, whoever you are.

If your successfull or not. If you know how to improve health then I

would imagine you belong on this forum. As for me I'am learning, and

eager to do so. So I would like to ask a question. How can someone

remain a vegetarian and still get enough protein? I have read alot

of contraversy on this subject. Do you need to take supplements?

Also does anybody know if tapeworms really do grow in the human body

I mean, maybe I'am ignorant, but please tell me is this really true.

Anybody know of any related websites on tapeworm? Thanx, Georgie

>>

~~~~~~~~~~~~

Hi Georgie,

We vegetarians get our protein the same way a horse, mule or cow gets theirs

from

the greens in the field. Ever wander why animals have the scoures in the

spring?

the greens are cleaning them out from all the stuff they ate all winter.(mega

grains

and dead hay)

The amino acids are the block builders in proteins so eat lots of greens and

take green drinks such as barley green, best of greens. or your choice.

Edith

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

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  • 3 months later...
Guest guest

I don't know enough to answer your question. My doctor/nutritionist has me on acidopholis, both internal (vanginally) and in pill form, plus diflucan, plus vitamin c & has taken me off all estrogen and given me only natural progsterone. I'm also on the modified elimination diet and have had some success and a few failures. I miss milk products and think soy milk tastes like Kaopectate, which I never really liked.

It sounds to me like you're on an awful lot of medication. How can they know what's working for you and what's not?

One thing I'm NOT doing, is taking matters into my own hands. I've found a physician who treats individuals with regular medicine and mixes it with homeopathic medicine (it's time has come). I'm doing exactly what he says and look forward to my next meeting with him. So far, I've made it through and I'm feeling a l-i-t-t-l-e better.

Good luck

Hi

From: AineGo@... I have been getting so much information from this web site and I am particularly grateful for Margaret and Cliff's contributions...and for me it is encouraging when they do not agree on everything because there is no "one'" remedy for anything. I have a doctors aptt. today and I really would like feedback/suggestions to my queryI was two weeks on Nizoral, two weeks off and then two weeks on Sporanox.I finish the Sporanox tomorrow and I am definitely NOT going on anymore medicationMeanwhile I have also, under the direction of a nutritionist working with my doctor, been on a lot of supplements such as Glutamine powder 1 tsp first thing in am and before bedtimeUva Ursi 1x before mealSupergarlic 2000 1x before mealUltra Clear Sustain(powder)-during mealThisilyn one during mealLiquid Zinc -during mealMetagest (3 plus after every meal)I was on Probiotics-Probioplex Intensive care and Ultra Flora for two weeks and had such intestinal discomfort and bloating that it was ascertained I was sensitive ti the grain in these so I no longet take theseI know I have to take some supportive supplements. I will take responsibility for that and for respecting an alternative food program from what I had been used toI have not had dairy, fruit, alcohol, sugar,pasta,grains,bread,and some vegetables since Jan 2nd.I am sick to death of salads and I am not a creative cook- however if I have to I will continue with certain diet modifications.I use nuts-particularly walnuts- to fill the void of chewing something for satisfaction and to "feel" full. Now my brother tells me that since I had my gall bladder removed I should not eat nuts??!!!MyQuestion. What are the MOST essential and LEAST amount of supplements one needs to take when gifted with candidiasis?. The supplements are frightfully expensive, particularly the metagenics brand which one is led to believe is "the purest" and sold in doctor's offices.I would appreciate any suggestions...and I do feel this cond has been a real gift to me-it has forced an awareness of what I put in my body first time in my life...and I thought I had been an aware healthy consumer!!!Thanks and blessings to all of us on our challenging journeysAine

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Guest guest

Hi my daughter was diagnosed with Jra when she was 2 she is 5 now and the

only problem she has had so far is with her eyes. She was diagnosed with

glacoma 2 weeks ago. She is going for surgery on April the 12th. Doctors

tell me she will most likely grow out of it. Could you let me know some

things about this.

>From: brandy_erin@...

>Reply- onelist

> onelist

>Subject: hi

>Date: Thu, 23 Mar 2000 06:31:13 -0000

>

>i am turning 23 in 2 months, but i have have had systemic rheumatoid

>arthritis since i was 5. if there are any parents out there who are

>interested in this disease from a child who grew up with this disease

>i'd love hear from you. first, i have had both hips and knees

>replaced. last month i had my left shoulder replaced. that started

>when i was 18, i read one of your posts where someone stated that

>hips wre being done on children as early as 9, i cannot believe that

>from my personal experince. i was 18 and still had to have my dr

>fight for it. doing that to a 9 year old would cause some serious

>maintenance surgery and possibly have to be redone before they turned

>18. also, i choose not to see and never have seen a rheumatologist

>more than twice. i don't take any medication you can't buy in the

>local drug store. the only meds strong enough will prevent my

>ability to have a baby, and also, i'm afraid that if i did take those

>meds i would never be able to handle life without them again. i can

>walk and climb stairs unassisted, drive, cook, have sex, clean the

>house, and most everything. you just have to have an imagination to

>figure out to do things. for example, i own an automatic, i use a

>straightened wire hanger(hold the stick and use the hook) to pick

>things up from the floor, pull things out of cabinets, and pull

>clothes out of the dryer. i use a stick with a razor taped to the

>end to shave the bottom of my legs where i can't reach. i keep the

>things i need the most often in the middle zone, not too high or too

>low. some of the things i can't do are reaching my feet or the

>floor, putting my hair up because i can't touch the back of my head(i

>use a bath brush to wash my hair and stuff), but I DO have ways to

>brush my own hair, get dressed by myself(the exception being socks),

>bathing myself, cooking for myself, i have been pretty independent

>since i got back on my feet. don't get me wrong, i had some tough

>times, had to learn to walk 4 more times than God intended, i just

>wanted to let you know life with this can be DONE WELL. GOODLUCK AND

>TALK TO YA LATER. BRANDY HENDRICKS

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

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Guest guest

Hi , Just out of curiosty, did you ever take prednisone?? How or did

the jra affect your growth (height)? Thanks for writing and sharing your

story.. Jane

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hi laura, i am very sorry, but i have never had any trouble with my eyes.

the only thing wrong with my eyes is that i now, since last year, have to

wear reading glasses. i am very sorry i couldn't be of more help. goodluck

to you both. brandy

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Guest guest

hi, i did try prednisone once. a rheumatologist named joanne jordan put me

on a 10 day trial of it. i will never try it again. when i was on it, i

didn't notice any difference except for having a little more energy. but,

when the 10 days was over, i was crippled for 3. when i asked the doc why

she would even think about doing something like that, she said she just

wanted to see what it would do. i was furuous and have only seen 2 rheumys

since, i have never seen one that did not experiment on me or try to do some

excrutiating thing to me. please be careful, they do not always treat the

child as well as the disease. goodluck, brandy

______________________________________________________

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Guest guest

In a message dated 3/23/00 7:41:06 PM Pacific Standard Time,

brandy_erin@... writes:

<< when i asked the doc why

she would even think about doing something like that, she said she just

wanted to see what it would do. i was furuous and have only seen 2 rheumys

since, i have never seen one that did not experiment on me or try to do some

excrutiating thing to me. please be careful, they do not always treat the

child as well as the disease. >>

I felt like adding my two cents to this one. This has been my experience as

well. I'm never sure if it's my doctor specifically, as I've heard other

people have had similar problems with him, or if it's a general

rheumatologist thing. The vast majority of nasty drugs I've taken over the

past ten years I have felt pushed into, experimented on, and pretty much used

as a guinea pig " to see what would happen " . I'd just like to remind everyone

that you can always say no. The doctor isn't always right about the latest

new treatments or even some of the tried and true ones. When it's your

child's health on the line (or your own) it's important to keep in mind that

YOU are the one in charge and letting yourself be bossed around by someone in

a white lab coat isn't going to be the miracle cure.

cheers

Jenni

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Guest guest

Hi ,

My son hasn't had any eye involvement due directly to his JRA. I

guess it is somewhat less common in children with the systemic type. I

hope someone here who knows more about this aspect will step in and be

able to share their experience. You and your daughter will be in my

thoughts, as the surgery date approaches. What type of surgery is it,

exactly?

Aloha,

Georgina

laura ziegler wrote:

> Hi my daughter was diagnosed with Jra when she was 2 she is 5 now and the

> only problem she has had so far is with her eyes. She was diagnosed with

> glacoma 2 weeks ago. She is going for surgery on April the 12th. Doctors

> tell me she will most likely grow out of it. Could you let me know some

> things about this.

>

> >From: brandy_erin@...

> >i am turning 23 in 2 months, but i have have had systemic rheumatoid

> >arthritis since i was 5. if there are any parents out there who are

> >interested in this disease from a child who grew up with this disease

> >i'd love hear from you. first, i have had both hips and knees

> >replaced. last month i had my left shoulder replaced. that started

> >when i was 18, i read one of your posts where someone stated that

> >hips wre being done on children as early as 9, i cannot believe that

> >from my personal experince. i was 18 and still had to have my dr

> >fight for it. doing that to a 9 year old would cause some serious

> >maintenance surgery and possibly have to be redone before they turned

> >18. also, i choose not to see and never have seen a rheumatologist

> >more than twice. i don't take any medication you can't buy in the

> >local drug store. the only meds strong enough will prevent my

> >ability to have a baby, and also, i'm afraid that if i did take those

> >meds i would never be able to handle life without them again. i can

> >walk and climb stairs unassisted, drive, cook, have sex, clean the

> >house, and most everything. you just have to have an imagination to

> >figure out to do things. for example, i own an automatic, i use a

> >straightened wire hanger(hold the stick and use the hook) to pick

> >things up from the floor, pull things out of cabinets, and pull

> >clothes out of the dryer. i use a stick with a razor taped to the

> >end to shave the bottom of my legs where i can't reach. i keep the

> >things i need the most often in the middle zone, not too high or too

> >low. some of the things i can't do are reaching my feet or the

> >floor, putting my hair up because i can't touch the back of my head(i

> >use a bath brush to wash my hair and stuff), but I DO have ways to

> >brush my own hair, get dressed by myself(the exception being socks),

> >bathing myself, cooking for myself, i have been pretty independent

> >since i got back on my feet. don't get me wrong, i had some tough

> >times, had to learn to walk 4 more times than God intended, i just

> >wanted to let you know life with this can be DONE WELL. GOODLUCK AND

> >TALK TO YA LATER. BRANDY HENDRICKS

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Guest guest

i am also an adult with child onset ra, since i was 5. i am glad you had

good rheumys, but i never even had one, they were all secretive and always

left me worse than when they found me. plus, the only drugs that could've

even been strong enough to work, they wouldn't give me. they said i was too

young. now that i'm 23, all the docs ask me why i was never on those same

meds and its very frustrating. i am doing well but i wonder a lot about the

meds i see these parents putting their kids on, NOT A CRITICISM, just

concern. their bodies will adapt these meds eventually and then they won't

work, what will happen when the day comes and they have to deal with this

disease with nothing more than courage and determination. that's what i do,

i'm afraid to find a med that works, get used to feeling wonderful all the

time and then have to hit rock bottom when it stops working. do you know

what i mean? looking for your input, brandy

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Guest guest

Hello

for those you that don't know me. My name is . I have had Systemic

onset JRA since I was 8 I am now 25. right hip replaced 13 and both knee's

replaced at 16. With many smallier surgeries also. I currently live

somewhere in MT, I can't remember where.

Yes growing up I was a gina pig also. But I was willing to try these meds

hopping that it would make me feel better. Some did some didn't. Those are

the chances you take. Not all rheumys are bad. I have had some great

Rheumys in my life time. I have had very caring rheumys in my life time.

If I hadn't been on some of the meds that I have been on over there years I

would probably still be in a wheel chair to this day. I have had a very

server case also. You do need to have the finnaly decision to what meds

your kids go on. I had to make some tough decisions just a couple of weeks

ago, but I deicied if it will make me feel better I will give it a chance.

I have been off mtx for 12 years due to I was having problems with my liver

and it really wasn't working anymore. But since the enbrel isant' working

for it's self I was willing to give the mtx another chance. Plus now

instead of takeing it pill form I will be injecting it instead, that way it

only goes through the liver once. Medications have changed alot over the

last 17 years. There is alot more meds out there now to treat J.A. then

there was when I was first dxed. I wouldn't take back any of the med trials

I went on over the years. I look at it like this. when I was in a trial

for a different medications. I wasn't just helping myself but I was helping

other kids as well. If it works good on the kids in the trail then it has a

good chance of working on other kids. If there was never in trials for new

meds there wouldn't be any new meds. But that is how I feel. I will go for

now. Talk to you all Later.

JRA World

http://www.jraworld.com

Re: hi

> From: chaospearl@...

>

> In a message dated 3/23/00 7:41:06 PM Pacific Standard Time,

> brandy_erin@... writes:

>

> << when i asked the doc why

> she would even think about doing something like that, she said she just

> wanted to see what it would do. i was furuous and have only seen 2

rheumys

> since, i have never seen one that did not experiment on me or try to do

some

> excrutiating thing to me. please be careful, they do not always treat

the

> child as well as the disease. >>

>

> I felt like adding my two cents to this one. This has been my experience

as

> well. I'm never sure if it's my doctor specifically, as I've heard other

> people have had similar problems with him, or if it's a general

> rheumatologist thing. The vast majority of nasty drugs I've taken over

the

> past ten years I have felt pushed into, experimented on, and pretty much

used

> as a guinea pig " to see what would happen " . I'd just like to remind

everyone

> that you can always say no. The doctor isn't always right about the

latest

> new treatments or even some of the tried and true ones. When it's your

> child's health on the line (or your own) it's important to keep in mind

that

> YOU are the one in charge and letting yourself be bossed around by someone

in

> a white lab coat isn't going to be the miracle cure.

>

> cheers

> Jenni

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates

> as low as 0.0% Intro APR and no hidden fees.

> Apply NOW!

> 1/975/1/_/524922/_/953888131/

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

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

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