Hello all

[Guest guest]

Hi ,

I find that many of my friends don't or can't deal

with chronic illness, after hanging with you a few

months they tire and think that it must be like the

flu, surely you must be okay. I hate it when people

ask how I am, much of the time they really don't want

to know, there are a few who do. I am so thankful for

our support group where we can be real and be honest

and say how we really are. If you need someone to

talk to, I am here.

God Bless,

Ruth

--- Bell <arthur.bell1@...> wrote:

> REBECCA

> I ALSO HAVE AIH, AND SICCA SYNDROME NEUROPATHY

> NUMBNESS I LIMS - STARTED

> WITH PINS AND NEEDLES THEN PAIN - EXTREME PAIN TILL

> SENSATION WENT - NOW

> HAVE NO FEELING IN RIGHT ARM PARTIAL LEFT AND FEET

> LEGS, BITS AND PIECES

> ELSEWHERE EG. HEAD FACE SIDE - THIS PROGRESSED

> RAPIDLY AND I WISH I HAD

> INSISTED IT BE LOOKED INTO FURTHER SOONER BUT WE

> NEVER WANT TO MAKE A FUSS

> AS DOCTORS ARE BUSY MEN AND WE THINK THERE ARE

> OTHERS WORSE OFF - IF I HAD

> BEEN TREATED SOONER I MAY STILL HAVE BEEN ABLE TO

> WORK, WRITE, DRESS MYSELF

> IN PROPER CLOTHES DO MY HAIR ALL TASKS WHICH ARE NOW

> A STRUGGLE - I AM 34

> WITH 2 YOUNG CHILDREN AND THE FUTURE IS NO LONGER

> SOMETHING TOLOOK FOREWARD

> TO, BUT MUSNT COMPLAIN -NO ONE EVEN THOUGH THEY ASK

> WANTS TO KNOW HOW YOU

> REALLY ARE.

> TAKE CARE

>

> CATHY

>

> [ ] Hello all

>

>

> > Hi everyone,

> >

> > Ok, I admit it...I am a lurker. I was diagnosed

> with AIH almost 1

> > year ago (Dec. 2001). I am currently on 5mg

> prednisone and 75mg

> > Imuran. The last 6 months has been very strange

> and frightening for

> > me. I am having an increasing number of symptoms.

> Joint pain,

> > FATIGUE, peripheral neuropathy (numbness and

> burning in feet, hands

> > and face), back pain... The strange thing is my

> blood tests look

> > great...liver is functioning VERY well, all LFTs

> normal.

> >

> > So, I am worried about connective tissue disease,

> and I really think

> > one is brewing for me. I was wondering if any of

> you have

> > experienced my latest symptom. It sounds strange,

> but my fingernails

> > hurt. Ok, I know it isn't really my fingernails,

> but the tissue

> > underneath them is so very tender. I notice it

> most when I

> > type...ouch. I get the same feeling in my toes.

> Anyone else

> > experienced this?

> >

> > I am going to see a rheumatologist in a couple of

> weeks. Saw one

> > last June and nothing came of it, but I feel I am

> getting worse. My

> > gastro agrees. She has been great about taking me

> seriously...other

> > docs haven't been so great at that!

> >

> > Anyway, thanks for all of your ongoing support

> guys. I know I don't

> > post much (working full time and can't seem to get

> ahead!), but I do

> > check back now and again...lots of new folks

> lately! Welcome to you

> > all. My liver functions became normal very

> quickly, and I wish you

> > all the same rapid response!! It definitely IS

> possible.

> >

> >

> >

> >

> >

> >

[Guest guest]

DEAR REBECCA AND RUTH

THANK YOU FOR YOUR EMAILS IT WAS NICE TO HEAR FROM YOU.

TAKE CARE

LOVE

CATHY

[ ] Hello all

> >

> >

> > > Hi everyone,

> > >

> > > Ok, I admit it...I am a lurker. I was diagnosed with AIH almost 1

> > > year ago (Dec. 2001). I am currently on 5mg prednisone and 75mg

> > > Imuran. The last 6 months has been very strange and frightening

> for

> > > me. I am having an increasing number of symptoms. Joint pain,

> > > FATIGUE, peripheral neuropathy (numbness and burning in feet,

> hands

> > > and face), back pain... The strange thing is my blood tests look

> > > great...liver is functioning VERY well, all LFTs normal.

> > >

> > > So, I am worried about connective tissue disease, and I really

> think

> > > one is brewing for me. I was wondering if any of you have

> > > experienced my latest symptom. It sounds strange, but my

> fingernails

> > > hurt. Ok, I know it isn't really my fingernails, but the tissue

> > > underneath them is so very tender. I notice it most when I

> > > type...ouch. I get the same feeling in my toes. Anyone else

> > > experienced this?

> > >

> > > I am going to see a rheumatologist in a couple of weeks. Saw one

> > > last June and nothing came of it, but I feel I am getting worse.

> My

> > > gastro agrees. She has been great about taking me

> seriously...other

> > > docs haven't been so great at that!

> > >

> > > Anyway, thanks for all of your ongoing support guys. I know I

> don't

> > > post much (working full time and can't seem to get ahead!), but I

> do

> > > check back now and again...lots of new folks lately! Welcome to

> you

> > > all. My liver functions became normal very quickly, and I wish

> you

> > > all the same rapid response!! It definitely IS possible.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hey Sharon,

Glad to have you here in the back row..... How's it going there

girl.... Summer will be here soon Sharon.... When does your gang get out

of school????

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

[Guest guest]

sorry to hear about the 'episode' hope the resolution is quick and successful. You seem to be in good spirits about it now.Optimism is our friend!

Patty

-----Original Message-----From: Weston [mailto:karenw@...] Sent: Monday, May 12, 2003 12:01 AM Subject: [ ] hello all

Hello all,

Well, Mother's Day is almost over and I'm just now wishing that all had a wonderful day. My mother's day was quite nice. I went out to eat with family and had a nice lunch. My daughter was home from college for the weekend so it's been rather busy. We met with the wedding coordinator on Friday. We are fast approaching the one year prior to the wedding mark! (May 29, 2004) If this year til the wedding goes as fast as the 18 months that my daughter and her fiance have been engaged, I'll blink my eyes and it will time for the wedding. So far it has been fun, exciting, and scary all at the same time planning the wedding and even thinking about my daughter being married!

I had the pleasure of going to the ER Saturday morning thanks to a severe episode of RUQ abdominal pain. After two rounds of demerol and phenergan, I was better. My liver enzymes were up even more than the last time with the AST at 404 and the ALT at 215. I have a feeling they probably won't be lowering my prednisone beyond the 10 mg daily I'm taking now. I just hope they don't decide to raise it again. I had labs done at Vanderbilt on Apr 29th when I saw the hepatologist. I haven't gotten those results yet. It will be interesting to see what my liver enzymes were since I wasn't having a lot of pain that day.

Despite the ER visit Saturday, the last few days have been good. I felt great all day Friday and have felt pretty good today.

Hope everyone had a great day!

W

[Guest guest]

Patty,

Thanks. Yeah, I am in good spirits. The episodes of RUQ abdominal pain are just a fact of life. When they get bad enough that the oral pain med won't control them, I get IV or IM pain med and then go on. I've managed to keep from being hospitalized since December, so I feel like I've made progress.

W

[Guest guest]

Oh dear , how sad I am that you had to go to ER! Were you having just liver problem or was it pancreas too? Hopefully, things are settling down. Take it easy this week, OK?

Debby

[ ] hello all

Hello all,

Well, Mother's Day is almost over and I'm just now wishing that all had a wonderful day. My mother's day was quite nice. I went out to eat with family and had a nice lunch. My daughter was home from college for the weekend so it's been rather busy. We met with the wedding coordinator on Friday. We are fast approaching the one year prior to the wedding mark! (May 29, 2004) If this year til the wedding goes as fast as the 18 months that my daughter and her fiance have been engaged, I'll blink my eyes and it will time for the wedding. So far it has been fun, exciting, and scary all at the same time planning the wedding and even thinking about my daughter being married!

I had the pleasure of going to the ER Saturday morning thanks to a severe episode of RUQ abdominal pain. After two rounds of demerol and phenergan, I was better. My liver enzymes were up even more than the last time with the AST at 404 and the ALT at 215. I have a feeling they probably won't be lowering my prednisone beyond the 10 mg daily I'm taking now. I just hope they don't decide to raise it again. I had labs done at Vanderbilt on Apr 29th when I saw the hepatologist. I haven't gotten those results yet. It will be interesting to see what my liver enzymes were since I wasn't having a lot of pain that day.

Despite the ER visit Saturday, the last few days have been good. I felt great all day Friday and have felt pretty good today.

Hope everyone had a great day!

W

[Guest guest]

, Scary how our perspective changes...feeling like you've made progress to be out of the hospital since Dec. However, that is worth congrats for. Sorry you have that intensity of pain though.

Our spirits are one of the few things we do have control over.

Patty

-----Original Message-----From: Weston [mailto:karenw@...] Sent: Monday, May 12, 2003 3:52 AM Subject: Re: [ ] hello all

Patty,

Thanks. Yeah, I am in good spirits. The episodes of RUQ abdominal pain are just a fact of life. When they get bad enough that the oral pain med won't control them, I get IV or IM pain med and then go on. I've managed to keep from being hospitalized since December, so I feel like I've made progress.

W

[Guest guest]

Are you happy with your doctor and therapies. I think mine is the greatest and he is in Atlanta not that far. Let me know and I will send you his name. I have been through the route where I have been dubious about my healthcare, so Imay be projecting a bit. I just hate to see you visiting ER or watching levels rise

Your bud

[Guest guest]

just wanted to let you all know that i love the files that i have been

reading...i have been researching this for over 3 years and have written an

e-book on a disease i have called hidrenditis supperitivia...i am a co-owner of

a support group on natural healing for HS on ...i also follow the diet

pretty much all the time..and to date have lost 138 lbs...i can put a copy of my

e-book in the files section if it is needed...please let me know?....this is the

book that is given out to all newbies that join HS-USA throughout the

world....it is not complete ..but i needed to have it ready for the yearly conf

we had in june...all in all i have about 3500 pages of research...my name is bb

and i live in tn...single and 48 years old with 3 grown girls..and 9

grandkids...i have been dealing with alot of medical problems my whole

life...and i still work...i wanted to thank you bee for all the great

information you have given us...and i hope to continue to be a part of this

great

group...hope all have a great day!

LOVE AND HUGS FROM BB

THE PAST IS GONE, THE FUTURE HOLDS NO PROMISE, THE PRESENT YOU CAN MAKE YOUR

OWN! LIVE IN THE PRESENT!

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

Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

BRENDA BOWERS wrote:

>

> just wanted to let you all know that i love the files that i have

been reading...i have been researching this for over 3 years and have

written an e-book on a disease i have called hidrenditis

supperitivia...i am a co-owner of a support group on natural healing

for HS on ...i also follow the diet pretty much all the

time..and to date have lost 138 lbs...i can put a copy of my e-book

in the files section if it is needed...please let me know?

==>Please send me your e-book directly since members cannot download

anything into our files. What is hidrenditis supperitivia?

> THE PAST IS GONE, THE FUTURE HOLDS NO PROMISE, THE PRESENT YOU CAN

MAKE YOUR OWN! LIVE IN THE PRESENT!

==>Interesting, but my favorite quote by L. Ron Hubbard is: Do not

regret yesterday, life is in you today and you make your tomorrow.

Bee

[Guest guest]

Do some colon cleansing....

http://curezone.com/forums/f.asp?f=329

If you can't afford a colon hydrotherapist or a colema board..

http://www.amenhealth.com/whatiscolema.html

you can do enemas.......

http://www.sawilsons.com/

>

> also i have gas 24 7 i cant control my colon muscles and i have a wet

> rectum what else hair less weight gain etc ........ what should i do i

> have battled for 2 years now .. i did rice brown rice but i took it

> out cuz in my case i need to kill the yeast!

>

[Guest guest]

Have you been thoroughly checked by your doctor for other causes to

your muscle problems?

I thought that my son had trouble with muscle control due to candida,

he was in fact allergic to wheat husks, so check everything for

possible allergy.

>

> also i have gas 24 7 i cant control my colon muscles and i have a

wet

> rectum what else hair less weight gain etc ........ what should i do

i

> have battled for 2 years now .. i did rice brown rice but i took it

> out cuz in my case i need to kill the yeast!

>

[Guest guest]

Lilly

Cascara Sagrada can become a major problem if overused. You may want to

google this one as a controversial tea to see more on its side effects

depending on how long you've used it.

Dark roast coffea has a similar effect on the bowels as a laxative

tea. The ash in the dark roast helps stimulate the bowels. Try

getting some hot teas in you especially in the morning and a little salt

to help rehydrate your tubes helping to move things along.

Willem

LILLY wrote:

> i have suffered with candida for a while i eat basically just protien

> fromaniamals flaxseed oil some vegies ,and veggies soups i make myself

> i take an antifugal and probiotics and enzymes ...r enzymes bad i take

> twinlabs can anyone find out if thats ok ? thanks also i dont take

> cascada sagada anymore havent been to the bathtroom in a week how can

> i get regular if i take them they are dependant if i dont take them i

> hear my candida will get worse what should i do?

>

>

[Guest guest]

Psyllium powder, seeds, or capsules will help you offset the effects of your

enzymes.

SG

>also i dont take cascada sagada anymore havent been to the bathtroom in a

>week how can

>i get regular if i take them they are dependant if i dont take them i

>hear my candida will get worse what should i do?

>

>

>

[Guest guest]

On Wed, 14 Dec 2005 01:54:53 -0000, you wrote:

>i have suffered with candida for a while i eat basically just protien

>fromaniamals flaxseed oil some vegies ,and veggies soups i make myself

>i take an antifugal and probiotics and enzymes ...r enzymes bad i take

>twinlabs can anyone find out if thats ok ? thanks also i dont take

>cascada sagada anymore havent been to the bathtroom in a week how can

>i get regular if i take them they are dependant if i dont take them i

>hear my candida will get worse what should i do?

>

Have you tried Linseeds? Magnesium oxide powder is good.

[Guest guest]

> >

> > also i have gas 24 7 i cant control my colon muscles and i have

a

> wet

> > rectum what else hair less weight gain etc ........ what should

i do

> i

> > have battled for 2 years now .. i did rice brown rice but i took

it

> > out cuz in my case i need to kill the yeast!

> >

>

[Guest guest]

> >

> > also i have gas 24 7 i cant control my colon muscles and i have

a wet

> > rectum what else hair less weight gain etc ........ what should

i do i

> > have battled for 2 years now .. i did rice brown rice but i took

it

> > out cuz in my case i need to kill the yeast!

> >

>

[Guest guest]

>

> I HAVE A BUMP ON MY GUM DOES ANYONE KNOW IF ITS RELATED TO YEAST?

ALSO > GET GAS 24-7 LIKE USUAL AND HARD TO HAVE NORMAL BOWELS BUT IAM

BACK ON > THE ANIMAL PROTIEN AND SOME GREENS AND ASPARGUS AND FATS AND

OILS =)

==>Dearest Lilly. May I please ask that you not write in all capital

letters? On the internet it means you are shouting/yelling.

==>The bump could be related to candida - keep an eye on it to see if

it gets larger or develops into an abcess. There are many mouth

symptoms in candida sufferers.

> XOXO LILLY ..MERRY CHRISTMAS ALL AND HAPPY NEW YEAR AND HOLIDAYS=)

> WHATS A GOOD PROBIOTIC? 3 LAC DIDNT WORK FOR ME BESIDES THERES SUGAR

> IN IT!!

==>Trophic Non-Dairy Acidophilus Plus, or cabbage rejuvelac (in my

article) is excellent! Merry Christmas and a Happy New Year to you too

my friend!

Bee

[Guest guest]

How did you find out there's sugar in it, Lily. I'm suspicious about it,

for it sure tastes sweet, and I don't think it should.

It only says yeast, to feed the good bacteria..

The bump on your gum, could it be an infected tooth? See your dentist

about it! I just had a terrible abcess. It was awful.

Good luck, a

-----Oorspronkelijk bericht-----

Van:

[mailto: ] Namens LILLY

Verzonden: donderdag 22 december 2005 20:37

Aan:

Onderwerp: [ ] HELLO ALL

I HAVE A BUMP ON MY GUM DOES ANYONE KNOW IF ITS RELATED TO YEAST? ALSO

GET GAS 24-7 LIKE USUAL AND HARD TO HAVE NORMAL BOWELS BUT IAM BACK ON

THE ANIMAL PROTIEN AND SOME GREENS AND ASPARGUS AND FATS AND OILS =)

XOXO LILLY ..MERRY CHRISTMAS ALL AND HAPPY NEW YEAR AND HOLIDAYS=)

WHATS A GOOD PROBIOTIC? 3 LAC DIDNT WORK FOR ME BESIDES THERES SUGAR

IN IT!!

[Guest guest]

-thankyou Bee sorry for all caps =) xoxo-- In

, " Bee Wilder " <beeisbuzzing2003@y...>

wrote:

>

>

> >

> > I HAVE A BUMP ON MY GUM DOES ANYONE KNOW IF ITS RELATED TO

YEAST?

> ALSO > GET GAS 24-7 LIKE USUAL AND HARD TO HAVE NORMAL BOWELS BUT

IAM

> BACK ON > THE ANIMAL PROTIEN AND SOME GREENS AND ASPARGUS AND

FATS AND

> OILS =)

>

> ==>Dearest Lilly. May I please ask that you not write in all

capital

> letters? On the internet it means you are shouting/yelling.

>

> ==>The bump could be related to candida - keep an eye on it to see

if

> it gets larger or develops into an abcess. There are many mouth

> symptoms in candida sufferers.

>

> > XOXO LILLY ..MERRY CHRISTMAS ALL AND HAPPY NEW YEAR AND

HOLIDAYS=)

> > WHATS A GOOD PROBIOTIC? 3 LAC DIDNT WORK FOR ME BESIDES THERES

SUGAR

> > IN IT!!

>

> ==>Trophic Non-Dairy Acidophilus Plus, or cabbage rejuvelac (in my

> article) is excellent! Merry Christmas and a Happy New Year to

you too

> my friend!

>

> Bee

>

[Guest guest]

--hi martina i dont mean sugar as in real sugar i just mean it didnt

help me does it have dairy in it i took three lac soo long ago iam

just paranoid these days i do non dairy probiotics is it dairy

free? - In , a van Campen

<martinavancampen@p...> wrote:

>

> How did you find out there's sugar in it, Lily. I'm suspicious

about it,

> for it sure tastes sweet, and I don't think it should.

> It only says yeast, to feed the good bacteria..

>

> The bump on your gum, could it be an infected tooth? See your

dentist

> about it! I just had a terrible abcess. It was awful.

>

> Good luck, a

>

> -----Oorspronkelijk bericht-----

> Van:

> [mailto: ] Namens LILLY

> Verzonden: donderdag 22 december 2005 20:37

> Aan:

> Onderwerp: [ ] HELLO ALL

>

> I HAVE A BUMP ON MY GUM DOES ANYONE KNOW IF ITS RELATED TO YEAST?

ALSO

> GET GAS 24-7 LIKE USUAL AND HARD TO HAVE NORMAL BOWELS BUT IAM

BACK ON

> THE ANIMAL PROTIEN AND SOME GREENS AND ASPARGUS AND FATS AND OILS

=)

> XOXO LILLY ..MERRY CHRISTMAS ALL AND HAPPY NEW YEAR AND HOLIDAYS=)

> WHATS A GOOD PROBIOTIC? 3 LAC DIDNT WORK FOR ME BESIDES THERES

SUGAR

> IN IT!!

>

>

>

>

>

>

[Guest guest]

This is in this groups " files " section.....

candidiasis/files/Success/

>

> hello all has anyone cured ther leaky gut or candida if so how ?

> thanks Lilly =) xoxoxo happy holidays !!!!

>

[Guest guest]

>

> Does anyone know a great book on candida rhwy can suggest that would

> be great xoxo Lilly =)

==>There is no book on candida which provides the correct diet like my

article and other references in our files. Print out the information

from the files and you have a wealth of information about candida.

Bee

[Guest guest]

Wow! I have an appointment with Dr. Rand on the 22nd as well. Mine is at 2 PM, as I recall.

Kim

In a message dated 2/16/06 6:42:18 PM, misgrrl@... writes:

i just wanted to pop in and say hello and let you know that i have

been reading what i can fom the group via my email delivery.

some people had posted to me, one who has an appointment with Dr Rand

on Feb. 22, like I do, and I wanted to find out who so maybe we could

have coffee or something.  Please feel free to email me with specifics.

I am also on here as spunkyone_66 so that is me as well.  So, wow,

there are many issues that are brought forth here and that is amazing

to me.  I was told five years ago that I would need this surgery, and

was told by a Dr in Tampa that well, basically he painted a bleak

picture.  Dr Rand has helped with that but his notes said that it is

pretty much the same.  I will be fused via two or three surgeries to

the sacrum, and etc...  One thing I find interesting is that he doesnt

want to traumatize patients by them wearing 'another' brace.  I am all

for it if it will help.  He said it will be tough, and from what I get

from you all, he is correct.  Again, I only want it to

somewhat 'work'. 

I do have a question.  Since I will be primarily 'alone' during this,

does anyone have any information on advocates or how NEBH deals with

pain issues post op?  Does anyone know what this 'rehab' place is?  I

am really in the dark and appreciate you all so very much.

Please know that every night before sleep, I mentally 'fly' around,

and put protective bubbles around all of us that have been touched by

this tremendously difficult issue.  Thanks!

scoliosis veterans * flatback sufferers * revision candidates

[Guest guest]

>Hey Kim~!!

There you are. I see him at 10 for x rays and so on. Kim, I will

have my partner with me who would love to chat, as do I, more about

your situation and questions for Dr Rand.

Kim, you can email me at:

lisa_dube@...

if you would like to have a coffee/support/a ride/ whatever you may

need. Hope to hear from you soon.

> Wow! I have an appointment with Dr. Rand on the 22nd as well.

Mine is at

> 2 PM, as I recall.

>

> Kim

>

> In a message dated 2/16/06 6:42:18 PM, misgrrl@... writes:

>

>

> > i just wanted to pop in and say hello and let you know that i

have

> > been reading what i can fom the group via my email delivery.

> >

> > some people had posted to me, one who has an appointment with Dr

Rand

> > on Feb. 22, like I do, and I wanted to find out who so maybe we

could

> > have coffee or something.  Please feel free to email me with

specifics.

> >

> > I am also on here as spunkyone_66 so that is me as well.  So,

wow,

> > there are many issues that are brought forth here and that is

amazing

> > to me.  I was told five years ago that I would need this

surgery, and

> > was told by a Dr in Tampa that well, basically he painted a bleak

> > picture.  Dr Rand has helped with that but his notes said that

it is

> > pretty much the same.  I will be fused via two or three

surgeries to

> > the sacrum, and etc...  One thing I find interesting is that he

doesnt

> > want to traumatize patients by them wearing 'another' brace.  I

am all

> > for it if it will help.  He said it will be tough, and from what

I get

> > from you all, he is correct.  Again, I only want it to

> > somewhat 'work'. 

> >

> > I do have a question.  Since I will be primarily 'alone' during

this,

> > does anyone have any information on advocates or how NEBH deals

with

> > pain issues post op?  Does anyone know what this 'rehab' place

is?  I

> > am really in the dark and appreciate you all so very much.

> >

> > Please know that every night before sleep, I mentally 'fly'

around,

> > and put protective bubbles around all of us that have been

touched by

> > this tremendously difficult issue.  Thanks!

> >

> >

> >

> >

> >

> >

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >