New to this group

[Guest guest]

Welcome to the group.

I was dx with AIH in November of 2001. I do not have any

children, but I do have nearly 100 teenagers a day in my

classroom. My days are busy in a different way than yours. At

least when they leave my classroom, most of my responsibility

concerning them is over where yours is on-going.

I have been doing really well on my prednisone treatment, but

lately I do tire more easily. I have my blood drawn for LFT's in two

weeks.

Once more welcome; I hope you will post often and ask as many

questions that you wish.

[Guest guest]

Welcome, me...

this is a great place to come and see what the rest of the world

(literally) is up to. I was dxed in '00. Am in the process of

tapering pred...am currently at 4mg daily...yippee! I'm 44, mom of 2

boys 21 & 18, have the winters " off " for the most part, but have 3

p/t jobs from may to nov. Hope you keep coming back and best wishes.

Laurie

[Guest guest]

Hi,

Welcome to the group. I'm sure you will find many friends here.

This is a great place for support. By the way, what's your name?

Debbie/FL

> Hi everyone!I am a 26 yr old single mom of two beautiful children.

my

> daughter will be 9 in April and my son is 3. Yep, you guessed it; I

> am buisy! I was diagnosed in 97' with chronic active autoimmune

hep.

> I have been having a hard time lately just keeping up with

the " daily

> routine " of things and found this group today. Thought I'd give it

a

> whirl and see if I might find a friend! And hey I'm here for you

too!

> I'm never to buisy to lend an ear or just be there! Hope to hear

from

> someone soon. And hey thanks for taking the time to read my note!!!

[Guest guest]

Wow, bless your heart. Good thing you have your supportive family. Let us know how the transplant goes.

[Guest guest]

Purplegrace,

Where do you live in upstate New York? I live in upstate New York in the southern section near the PA border. I received a liver transplant in 1995 at Pittsburgh and would be willing to correspond with you if I can be of any help.

You can email me directly at: Bonmanpat@...

Bonnie

AIH and post transplant

[Guest guest]

Hi,

I am Lyn and I just wanted to welcome you. This group is a wonderful group of people. So sorry to hear about the PSC. Sounds like you have a good amount of support from your family and that is wonderful. You will find a lot of support on here also. I read here every day, but haven't posted often. I am just beginning to learn this message board and making mistakes learning. LOL

I don't have much input on losing weight. I like to walk , but don't do enough of it. It seems the safest exercise for me to do.

I hope you are having a nice Friday and also wish you a nice Weekend.

Take care now,

Lyn/Ark.

purplegrace12401 <purplegrace@...> wrote: Hi, I'm Purplegrace12401 in upstate NY I have Primary Sclerosing CHOLANGITIS DIAGNOSED in 1994 I continued to work til 1997 but had one infection after another and finaly took my doctor's advice and retired I got SS dissability I'm now awaiting a liver transplant If a doner liver can't be found My son is willing to share his. I recently had a bad bleed from my esophageal varices (needed 5 units of blood) I also had some amonia in my blood (227) and went a little Crazy. But my husband and my 7 kids took turns staying by me until I was myself again. The worst part of that is realizing that I couldn"t read I decided to join a support group because I was very frightened. I had to lose weight but have no engery to excerise, any ideas??? I'll close for now, purplegrace@...

[Guest guest]

Sharon, May I ask you : Were you on prednisone and imuran for treatment? After being off treatment for 7 years, did you have bloodwork done regularly to check the liver enzyme levels? And how frequently was it done? Did you discover your reoccurrence of AIH from abnormal liver enzyme levels? Did you have symptoms? And have you had a biopsy? Sorry to ask so many questions, but I have AIH (Jan 01) and I am also trying to understand what's going on with everyone so that I can understand this disease better. I hope you find a good hepatologist. When my enzymes were first abnormal, I called around to find a hepatologist (just by looking in the yellow pages), turns out there's only a handful who specialise in liver diseases, and out of this handful, only one had a immediate appt available, and as I couldn't wait being in a state of panic, I went to see her, and thankfully she's good. I found thru' experience that a good doctor isn't always one who's hard to get an appt with! Sometimes this is the only way to find your doctor - get the firs available from yellow pages so that you can get on the meds, then if you aren't happy with him/her, you have some time to look for another....But getting treatment immediately is of utmost importance. Good Luck...am rooting for you, aisha [ ] New to this group Hi. I just learned that I have had a reoccurence of my autoimmunehepatitis. I had three previous episodes, but have gone 7-8 years without areoccurence and this is without medication of any sort. I honestly thoughtI was cured. I am so down. I live in the Philadelphia, PA area. At this point I have nohepatologist. Can anyone recommend someone at one of the teaching hospitalsin Philadelphia who knows what he/she is doing when it comes to treatingautoimmune hepatitis. (My previous doctor moved away from the Philadelphiaarea several years ago and since I was in remission and not on anymedication, I have continued to see my internist and have bloodwork every 6months.) Thanks. Sharon_________________________________________________________________MSN Photos is the easiest way to share and print your photos:http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Aisha,

Thanks for your response. I was originally diagnosed about 15 years

ago. I have never had symptoms. The abnormal liver was discovered by

routine bloodwork. Unfortunately, the first gastroenterologist I saw

watched the lab results for 6 months constantly becoming worse, not doing

any treatment. At that point a friend who was a doctor suggested that I

really should be going to a liver specialist and he refered me to someone

with whom he had trained. I had the biopsy, treatment was begun. Each time

I was treated with Imuran and Prednisone, and each time my liver values

became normal in about 1-1/2 to 2 years. Then I would be off all meds for

about 2 years, until the situation would reoccur. The doctor told me that

the medication would " trick " the liver so that eventually I would go into

remission permanently.

Since my last problem, I have had bloodwork every 6 months and I have

been followed by my internist, after the liver specialist moved away. I

truly thought I was " cured. " Wednesday I had bloodwork and I got a call the

next day saying that the liver results were 150. I guess I should be happy

they weren't any higher.

I hope someone out there can give me a name of someone in the

Philadelphia area at a major teaching hospital (we have several) who has

expertise in autoimmune hepatitis. Yesterday I attempted to call my

previous hepatologist in Florida to get a name from him, but he never called

back. I don't want to repeat my bad experience of having a doctor " watch "

my liver worsen for 6 months.

Good luck to you in your treatment. I think this disease is very

unpredictable. I guess I should be happy that I was able to go so many

years without medication.

Sharon

>From: " aisha yeoh " <aishayeoh@...>

>Reply-

>< >

>Subject: Re: [ ] New to this group

>Date: Sat, 3 Aug 2002 07:13:45 -0700

>

>Sharon,

>

>May I ask you : Were you on prednisone and imuran for treatment? After

>being off treatment for 7 years, did you have bloodwork done regularly to

>check the liver enzyme levels? And how frequently was it done?

>

>Did you discover your reoccurrence of AIH from abnormal liver enzyme

>levels? Did you have symptoms? And have you had a biopsy?

>

>Sorry to ask so many questions, but I have AIH (Jan 01) and I am also

>trying to understand what's going on with everyone so that I can understand

>this disease better.

>

>I hope you find a good hepatologist. When my enzymes were first abnormal,

>I called around to find a hepatologist (just by looking in the yellow

>pages), turns out there's only a handful who specialise in liver diseases,

>and out of this handful, only one had a immediate appt available, and as I

>couldn't wait being in a state of panic, I went to see her, and thankfully

>she's good. I found thru' experience that a good doctor isn't always one

>who's hard to get an appt with! Sometimes this is the only way to find

>your doctor - get the firs available from yellow pages so that you can get

>on the meds, then if you aren't happy with him/her, you have some time to

>look for another....But getting treatment immediately is of utmost

>importance.

>

>Good Luck...am rooting for you,

>aisha

> [ ] New to this group

>

>

>

> Hi. I just learned that I have had a reoccurence of my autoimmune

>hepatitis. I had three previous episodes, but have gone 7-8 years without

>a

>reoccurence and this is without medication of any sort. I honestly thought

>I was cured. I am so down.

>

> I live in the Philadelphia, PA area. At this point I have no

>hepatologist. Can anyone recommend someone at one of the teaching

>hospitals

>in Philadelphia who knows what he/she is doing when it comes to treating

>autoimmune hepatitis. (My previous doctor moved away from the Philadelphia

>area several years ago and since I was in remission and not on any

>medication, I have continued to see my internist and have bloodwork every 6

>months.) Thanks.

>

> Sharon

>

>

>

>

>

>

>

>_________________________________________________________________

>MSN Photos is the easiest way to share and print your photos:

>http://photos.msn.com/support/worldwide.aspx

>

>

>

>

[Guest guest]

Hi Debbie, I am from PA too. burg.

I wasn't given a diagnosis. I was having chronic fatigue

and later a bunch of muscle pain that felt like fibro.

Thankfully I didn't have migraines but did have headaches

equal to it.

Your body is probably really out of balance like mine.

Canida overgrowth, low progesterone, low thyroid although it

tested in the normal range. Mineral deficiency is another

culprit. Food sensitivities. Amino deficiencies. Found

last but not least that the mercury filling in my teeth

were causing many of my problems, probably triggered this

whole imbalance, so I had them out. Enzyme supplementing

is a must if you test that your not digesting your food

properly. Consider fatty acid supplementing.

The best I found to be helpful for IBS is to take calcium

and magnesium tablets. Then add MSM along with vitamin C.

This I took twice a day for 4 months and I don't need to

take it anymore. I believe our cells get low in its nutrients

and we have to supplement and rebuild. MSM is great for Fibro

and inflammatory bowel disease. It is a natural pain reliever.

The condition of the bowel is very important too. If clogged

up then nutrient absorption suffers. Also oxygen to body is

low. It is never one thing with a problem like this.

Like candida, other parasites and bacteria can cause big problems

with pain, fatigue and more symptoms. One of my first suggestions

is to get a stool analysis done and have it checked for yeast,

bacteria, and digestive status. I found out I had pneumonia with

the test that I had. No wonder I was feeling fatigued and not

able to get a full breath. Still struggling but I am out of bed.

Hope this information can send you to search what might work.

Liz D.

> Hello im debbie from pa and I have it all fibro ibs migrains no drs

> will do anything for me what can I do they dont do any test HMO

> stuff please help all they give me is pills pills pills AND THATS Y

> MY STOMACH IS A MESS IN THE FIRST PLACE ANDIVE HAD LOTS OF

ACCIDENTS

> THANKS ALOT

[Guest guest]

> Hello im debbie from pa and I have it all fibro ibs migrains no drs

> will do anything for me what can I do they dont do any test HMO

> stuff please help all they give me is pills pills pills AND THATS Y

> MY STOMACH IS A MESS IN THE FIRST PLACE ANDIVE HAD LOTS OF

ACCIDENTS

> THANKS ALOT

If you would like to get yourself tested for mercury

poisoning, here is how:

/files/HOW_TO_hair_test

If you don't have a doctor to sign, you can do it for $80

(see info in file). The test just uses hair, so it is

not too painful See the info at URL for how to

interpret the test results.

best wishes,

Moria

[Guest guest]

To help with the gas and bloating I have found that psyllum doesn't

agree with me. Instead, I have been taking Super Seed, made by the same

people that make primal defense, as well as a good digestive enzyme,

which I think helps the best with the gas. I love the OmegaZyme, I have

compared the ingredients to many other digestive enzymes and they appear

to be the best in my book. Also by Garden of Life.

new to this group

I am new to this group after discovering I have had candidiasis for

years and am riddled with it. I am on a yeast free sugar free diet

and initially had a good response. But of course there is still some

latent infection there and when I slipped last night and drank half a

glass of iced tea boom it was back. I am now going to try to go for

a die off and cleanse my colon. I am one of those people who have

been seriously constipated all my life. On the program I have put

together I have been taking acidopholous and psyllum but I try to

take it around my social schedule as the gas is quite anti social.

I am planning to do a colon cleanse this weekend and work on doing

some stuff on the oral stuff - I have geographic tongue. I have been

using a rinse more regularly but maybe I should get an anti-candida

rinse. My appetite seems to be going down and I actually crave

vegetables now rather than sugar.

I am also still on caffeine as I am heavily addicted to it and

experience real withdrawal when I try to stop. I am willing now to

drink more water in order to try to get this stuff outta my body but

I don't know a good way to get caffeine free without doing it slowly.

maresie

[Guest guest]

Welcome to the banded world. Have you got your first fill yet?

Are you losing 1-2 lbs a week?

I've been banded for a bit over a year and I've losdt 70 lbs. I

love my band but yes, the band is finiky. Some times we can eat at

meal time and other times, the band is clearly saying no.

The band clearly has days when it doesn't want you to eat much and

other days when it's wide open.

Make wise choices when you eat and you'll be happier for it. I say

after having 2 months of holidays and poor eating choices. The

difference is that while I didn't do myself any favors in November

and December- I didn't gain weight either. No loss, no gain. I

never could have done that before the band.

>

>

> Hi,,I just joined this group today

> I was banded Oct 7th and my weightloss seems to be quite

> slow,,

>

[Guest guest]

doc,

Ive had three dills so far and go for my 4th this coming

thursday. I do not have family here nor did I go to any holiday

parties so my eating habits have not changed. I am careful on what I

eat and usually careful on how much,I do alot of protein drinks for

meals and water,propel and fruit2-0...my weight seems to be stagnant.

One of my friends from work has had 4 fills,,had surgery the

day before me,,can eat pizza and burgers,,and still has lost 36

lbs,,she said she cant figure it out cause she seems me eating soup

and jello,,I was reatining water and the nutritionsit told me it was

ok to use a water pill,,and lost that 10 lbs of waterweight in 3 days

so I dont feel bloated anymore,,thank God,,the fickle band has me

confused. I just woke up and I know I cannot have anything more than

a protein drink,,scared to try anything till noontime thats more than

liquid

, " dochinkabands " <dochinka99-

misc@y...> wrote:

>

>

> Welcome to the banded world. Have you got your first fill yet?

> Are you losing 1-2 lbs a week?

>

> I've been banded for a bit over a year and I've losdt 70 lbs. I

> love my band but yes, the band is finiky. Some times we can eat at

> meal time and other times, the band is clearly saying no.

>

> The band clearly has days when it doesn't want you to eat much and

> other days when it's wide open.

>

> Make wise choices when you eat and you'll be happier for it. I say

> after having 2 months of holidays and poor eating choices. The

> difference is that while I didn't do myself any favors in November

> and December- I didn't gain weight either. No loss, no gain. I

> never could have done that before the band.

>

>

>

>

> >

> >

> > Hi,,I just joined this group today

> > I was banded Oct 7th and my weightloss seems to be quite

> > slow,,

> >

[Guest guest]

Hi there - welcome!! -

Yup, the band has a mind of it's own and will remind you regulary who

is in charge - and it isn't you!! :-)

Please tell us more about you so we can offer suggestions. What

exactly has your loss been? Starting weight? prsent weight?

Lots of us think that the average 1-2# a week is below normal, when

it's not. Or we really " know " that, but then still worry that 4-8 #

a month is too slow (when it's the same!)

Have you had fills? they are what make the band work, and it often

takes 3-5 fills over several months to get to " good " when your weight

loss will take off if you're doing the othere stuff reasonably well.

WE'll be happy to offer ideas . sandy RN

-- In , " luvinkiss " <luvinkiss@y...>

wrote:

>

>

> Hi,,I just joined this group today

> I was banded Oct 7th and my weightloss seems to be quite

> slow,,

> Has anyone has problems retaining water?

> Also,,does your band seem to have a mind of its

own,,letting

> you eat one meal and the next not letting you have anything but

> liquids?

[Guest guest]

I neglected to mention the water retention. If you are dehydrated,

you'll often have water retention, as your body is holding onto every

drop. be sure to get in the 8-10 glasses of fluid we need a day,

mostly non-clorie fluids.

If you still have water retention, or if it is severe, (puffy hands,

ankles, feet, shortness of breath, etc) you need to see your family

doc for some kidney and cardiac tests, to be safe. sandy RN

>

>

> Hi,,I just joined this group today

> I was banded Oct 7th and my weightloss seems to be quite

> slow,,

> Has anyone has problems retaining water?

> Also,,does your band seem to have a mind of its

own,,letting

> you eat one meal and the next not letting you have anything but

> liquids?

[Guest guest]

Why can't you have more than liquid before lunch? Have you actually

PB'ed while trying to eat a breakfast of solid protein. If so have

you tried a warm drink before trying to eat. A lot of bandsters

accept the liquid only because of fear and we need to get beyond

this. Some just cant do breakfast but we need to try because it is

healthier. Breakfast is a great time of day to get lots of fiber in

our bodies.

Charlie

[Guest guest]

Thursday, January 13, 2005, 9:56:23 AM, you wrote:

CC> Why can't you have more than liquid before lunch? Have you actually

CC> PB'ed while trying to eat a breakfast of solid protein. If so have

CC> you tried a warm drink before trying to eat. A lot of bandsters

CC> accept the liquid only because of fear and we need to get beyond

CC> this. Some just cant do breakfast but we need to try because it is

CC> healthier. Breakfast is a great time of day to get lots of fiber in

CC> our bodies.

Not sure if you were responding to me or someone else. All I can get

down in the morning is a warm drink, specifically a sugar free hot

chocolate or two. I have that between five and six while reading the

paper, watching the news on the tube, getting shower and dressed.

About ten or so I'll have a protein drink. I can usually eat

something solid by one or so. Not much, but enough. In the evening

I'm certainly not wide open, but can have enough to get me the

nutrition I need. I don't eat the last two hours before bed (i.e.

after 800pm). Works for me. Some would say I'm too tight, but I live

with the pattern that the band provides. Sure, I wish it would be

open in the morning and tight at night, but....no such luck.

dan

Dan Lester, Boise, ID honu@... www.mylapband.tk

Dr. Ortiz, Tijuana, 4/28/03

323/209/199 Age 61 Fair is whatever God decides to do.

[Guest guest]

I have tried warm liquid and i cant eat or i throw up, I can usually eat about

10 a.m. what kind of things do you have for breakfast, that are high fiber?

looking for ideas, Jena

Re: New to this group

Why can't you have more than liquid before lunch? Have you actually

PB'ed while trying to eat a breakfast of solid protein. If so have

you tried a warm drink before trying to eat. A lot of bandsters

accept the liquid only because of fear and we need to get beyond

this. Some just cant do breakfast but we need to try because it is

healthier. Breakfast is a great time of day to get lots of fiber in

our bodies.

Charlie

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

[Guest guest]

Dan,

Not to you. LOL

It was for Luvnkiss who I assumed was a newbie from her post. After a

while we learn what works for us but the newbies need to evaluate

that ability to take in solid prptein in the morning.

Charlie

[Guest guest]

Jena,

On mornings that the warm liquid works we have a bowl of Kashi Go

Lean cereal with skim milk or a serving of oatmeal. I just can't do

eggs or meat until lunch or later. Kashi Go Lean is great because you

can take it to work as a snack. I don't really like dry oatmeal. LOL

Charlie

[Guest guest]

Well, welcome to our group! We started out as outcasts from another

group, and have been moving along for, I think over 3 years now. The

group we were from was more focused on alternative treatments. We decided

we would not recommend or discourage any choice of treatment or the

choice not to treat. We are here to support each other, share information

and experience, and try to have a little fun along the way. I think

you'll find the people here very friendly and supportive as I have.

Again, welcome. -dz-

At 11:31 PM 1/19/2005, you wrote:

Hello everyone:

I am new to this group. I was diagnosed with Hep C in 2001.

Been in

treatment for it twice. I strated looking for online support

groups

and came accross a nice group that was just starting. It was just

me

and the group administrator. We communicated online for a while,

keeping each other posted on everything. The administrator was

very

supportive, but also had some other issues. I haven't heard from

the

group administrator for a while. I hope everything is OK, but now

I

am alone as I was the only member of that group. So here I

am.

[Guest guest]

Welcome to thegroup. Terryumusseb <myhuevo@...> wrote:

Hello everyone:I am new to this group. I was diagnosed with Hep C in 2001. Been intreatment for it twice. I strated looking for online support groupsand came accross a nice group that was just starting. It was just meand the group administrator. We communicated online for a while,keeping each other posted on everything. The administrator was verysupportive, but also had some other issues. I haven't heard from thegroup administrator for a while. I hope everything is OK, but now Iam alone as I was the only member of that group. So here I am.__________________________________________________

[Guest guest]

Welcome! It is nice to know there are others out there with the same

thing, huh? you were really teased and bullied? wow, that is

terrible! my little girl is only 4, so we havne't had any teasing

yet.

>

> Hello everyone

>

> For almost 49 years I have wonder why I had different coloured

eyes,

> my right eye is blue, my left brown. I didn't even know it had a

> name until today!! By sheer chance I found this group, and

realise

> I am not alone. I would love to hear from anyone with the same

> condition, if that is what you can call it.

>

> As a child I was teased, and at times bullied. Now as an adult I

> find people notice, you can see them looking from one eye to the

> other, but they don't always say anything. I really want to know

> about other peoples experiences etc. Even help with finding out

> more about it would be good.

>

> looking forward to hearing from anyone, Lesley

[Guest guest]

4-6 volts is the range. Any multi-stranded wire is ok, example:

spearker wire, lampcord, appliance cord. The cord should be

flexible.

b

>

> Hi,

>

> I am just thinking about building the apprentice device. Will any

electric wire do?

>

> I want to start very slow. Any reason not to try a 4.5 volt

battery?

>

> I am also considering to try this device with my 9 year old

daughter. Any advice?

>

> We have no really serious viral issues, just verucas and swollen

lymph nodes.

>

> Thank you for any answer.

>

> Dagmar.

>

>

[Guest guest]

Thank you!

Dagmar.

Re: new to this group

4-6 volts is the range. Any multi-stranded wire is ok, example:

spearker wire, lampcord, appliance cord. The cord should be

flexible.

b

>

> Hi,

>

> I am just thinking about building the apprentice device. Will any

electric wire do?

>

> I want to start very slow. Any reason not to try a 4.5 volt

battery?

>

> I am also considering to try this device with my 9 year old

daughter. Any advice?

>

> We have no really serious viral issues, just verucas and swollen

lymph nodes.

>

> Thank you for any answer.

>

> Dagmar.

>

>