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Hi Barbara,

Wow, the Netherlands must be real nice:>). I also have severe dysbiosis.

When I had that test done it was off of the graph. I am about to start on

some things also. I believe it is good to move that colon so that the toxins

can come out that you are ridding yourself of with the other products. What

type of product are you on for your colon and how much are you

taking?....Tonya

In a message dated 12/29/00 10:13:54 AM Central Standard Time,

barbinohio@... writes:

<< According to my GSDL stool results, I have severe bacterial dysbolis.

I've been watching my diet and taking digestive enzymes, Dr Schultze's >>

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Maybe someone else can add on to this but we should have lighter stools so to

me that is a good sign. Anyone else has a comment on this for

Barbara?....Tonya

In a message dated 12/29/00 11:50:12 AM Central Standard Time,

barbinohio@... writes:

<< At first dark stuff came out and then it

got lighter and lighter.

Barbara >>

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Yeah, its good to move the colon but my isnt moving so good!!

I read on a previous email here that black stuff coming out is a good

sign? I'm getting lots of black stuff when my bowels DO finally move.

The things I'm taking are Zypan(digestive enzymes), Dr. Schultze's

intestinal formula 1, Garlic capsules, olive leaf extract, Nature's

Way probiotics, and psylluim husks(Colon Cleanse is the name brand).

The doctor in america recommended vitamin C flushes to clean out the

intestines. You buy the powdered ascorbic vitamin C...then take 1

teaspoon in 2 ounces of water every half hour. You continue to do

that until you get loose stools(bowel tolerance). He said not only

does it clean out your bowels but it also tells you how much vitamin C

your body needs. Last time I did it, I felt like I would explode

before I reached tolerance! At first dark stuff came out and then it

got lighter and lighter.

Barbara

> Hi Barbara,

> Wow, the Netherlands must be real nice:>). I also have severe

dysbiosis.

> When I had that test done it was off of the graph. I am about to

start on

> some things also. I believe it is good to move that colon so that

the toxins

> can come out that you are ridding yourself of with the other

products. What

> type of product are you on for your colon and how much are you

> taking?....Tonya

>

> In a message dated 12/29/00 10:13:54 AM Central Standard Time,

> barbinohio@h... writes:

>

> << According to my GSDL stool results, I have severe bacterial

dysbolis.

> I've been watching my diet and taking digestive enzymes, Dr

Schultze's >>

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Hi,

You must have had the stool test. I have severe dysbiosis also and

actually went off of the line. There is someone else here that said they have

it. A lot of us probably do and just may not know. It can take some time

since our bodies have gone through so much. E-mail me personally if you would

like and I can share my little story with you:>) Bob, she mentioned about the

experience. I know that with some products I have tried I have gotten that

terrible pain she has spoken of, those sharp pains and they are nothing nice.

Some products with cascarda(sorry, not sure of the spelling, I should know

how to spell it by now) anyway it gives me those pains. I read or heard that

if that herb does something for a year than it should not cramp. I can't

remember what I read. SYDAUS123 e-mail me if you like.....Tonya

In a message dated 12/31/00 4:27:53 PM Central Standard Time,

SYDAUS123@... writes:

<< I am a new member and i am so glad a came across this. I did not

think there were so many others that had this problem!!! I am not

alone...I need help...I just started with the detox program and I am

in the middle of changing docs...i have been on experience..i dont

think this is what I need though. It cleans me out once a day but i

get sharp pains before i go and no black stuff..my chiro gave my

Ultra Clear SUSTAIN to take but you have to drink it and i threw up

while trying to take it...any suggestions...also kidneys and

intestines very toxic and sever dysbiosis? i think that is what it

is called...any member of this group from MN?? Currently looking for

Naturopath in my area... HELP>>>>>>!!!!!!!! I feel it is hopeless???

Where should I start??????

>>

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At 06:31 PM 12/31/2000 -0500, you wrote:

>Bob, she mentioned about the

>experience. I know that with some products I have tried I have gotten that

>terrible pain she has spoken of, those sharp pains and they are nothing nice.

>Some products with cascarda (sorry, not sure of the spelling, I should know

>how to spell it by now) anyway it gives me those pains.

When taking Experience cramping can be reduced by drinking more water (8-10

glasses per day). Also be sure to drink 1-2 glasses (8-16 oz.) when taking

it. Avoid carbonated beverages and exercise regularly. Rest when needed,

reduce stress.

Instructions for taking Experience -

http://www.north-land.com/discovery/experience_facts.htm

Bob

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i also have just been lurking for some time. but since the subject of

severe dysbiosis came up! I also am off the scale for severe dysbiosis. I

had a CDSA done, because My Dr's think I have Candida, but the test did not

show up any Candida, just dysbiosis. Any comments or suggestions.

thanks

gail

>From: DWigg54545@...

>Reply-bowel cleanseegroups

>bowel cleanseegroups

>CC: DWigg54545@...

>Subject: Re: NEW MEMBER

>Date: Sun, 31 Dec 2000 18:31:23 EST

>

>Hi,

> You must have had the stool test. I have severe dysbiosis also and

>actually went off of the line. There is someone else here that said they

>have

>it. A lot of us probably do and just may not know. It can take some time

>since our bodies have gone through so much. E-mail me personally if you

>would

>like and I can share my little story with you:>) Bob, she mentioned about

>the

>experience. I know that with some products I have tried I have gotten that

>terrible pain she has spoken of, those sharp pains and they are nothing

>nice.

>Some products with cascarda(sorry, not sure of the spelling, I should know

>how to spell it by now) anyway it gives me those pains. I read or heard

>that

>if that herb does something for a year than it should not cramp. I can't

>remember what I read. SYDAUS123 e-mail me if you like.....Tonya

>

>In a message dated 12/31/00 4:27:53 PM Central Standard Time,

>SYDAUS123@... writes:

>

><< I am a new member and i am so glad a came across this. I did not

> think there were so many others that had this problem!!! I am not

> alone...I need help...I just started with the detox program and I am

> in the middle of changing docs...i have been on experience..i dont

> think this is what I need though. It cleans me out once a day but i

> get sharp pains before i go and no black stuff..my chiro gave my

> Ultra Clear SUSTAIN to take but you have to drink it and i threw up

> while trying to take it...any suggestions...also kidneys and

> intestines very toxic and sever dysbiosis? i think that is what it

> is called...any member of this group from MN?? Currently looking for

> Naturopath in my area... HELP>>>>>>!!!!!!!! I feel it is hopeless???

> Where should I start??????

>

> >>

_________________________________________________________________

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  • 3 weeks later...

In a message dated 1/22/01 9:45:43 AM Pacific Standard Time, suzannewest47@... writes:

My name is Suzanne, I am 53 years old and live in Ontario, Canada.

Suzanne, I'm sorry you're having these difficulties. Let us know how things go.

Harper (AIH 5/00, 53)

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Suzanne West wrote:

My name is Suzanne, I am 53 years old and live in

Ontario, Canada.I am married (35 years) and have three grown sons ages

34, 31, and 30. One is married but I have no grandchilren yet.I have been

having problems with pain and extreme fatique for YEARS, but about 13 years

ago during an insurance physical, it was found I had elevated Liver readings.I

saw the first specialist who felt my liver, said it wasn't enlarged so

he didn't feel there was a problem. My regular doctor sent me for

regular blood tests for another 5 years - they were always elevated.I had

to change doctors and my new family doctor also had regular blood tests

done and felt because they were still elevated I should see another specialist.

I had no tests other than blood tests and after talking to the specialist

she felt I had "Fatty Liver" and that it was not a problem and would never

get worse.I had to have a hysterectomy and on the operating table the surgeon

could not get the bleeding under control. I was finally backed with

gauze and had drainage tubes left in to drain the blood. After this

operation I started having severe problems with my bowels. Saw another

Gastro. specialist who did a partial colonoscopy and agreed with the previous

specialist that I probably had "Fatty Liver" and to come back to see him

if my bowel problems did not go away within a year.Changed family doctors

again and I had to convince this new doctor that I was having more serious

problems with my liver. He said there is no pain with liver disease

(I have heard this from almost every doctor), he felt I was probably

suffering from depression or stress. I insisted on having blood tests

done and they were still elevated and also showed I had a problem with

blood clotting. I also had suddenly developed high blood pressure.

I insisted on seeing a Gastro. specialist but could not get an appointment

for 5 months (Aug. 2000). I ended up in emergency department the

beginning of July and the doctor on duty consulted with the Gastro. specialist

on call and after blood tests and noting my blood pressure and bright red

palms, I was told to see my specialist immediately.I managed to get a cancellation

and saw my specialist in July (she was the one who told me I had fatty

liver). She felt I probably now had NASH but ordered tests before

she went on holidays. The end of July I was told I probably had autoimmune

disease that had damaged my liver. MRI and CATscans, blood tests

were booked and nothing was confirmed. I then had to have a transjugular

biopsy (because of the bleeding problem) but all they got with the 7 samples

was scar tissue. The pathologist sent a sample and a smear to a liver

transplant centre and I was given a diagnosis of cryptogenic cirrhosis.

After another ultrasound and a heart stress test I saw my specialist on

January 16, 2001 and was then told the pathologist felt (after re-examining

the smear) I had "burnt-out" autoimmune cirrhosis. It is also felt

that I now also have PSC (which they say would account for the pain).I

now have to have more tests done and then I will be sent to a transplant

centre for evaluation.I also have an enlarged spleen, and suffer from nosebleeds

and bleeding from the bowel.Does anyone in this group have a problem with

pain?One of the tests I have to have is called a ERCP - has anyone else

had this test? If so please tell me what to expect.Thanks for any

help you can give. Suzanne

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

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  • 2 weeks later...

Helen,

do you mind me asking how long you have had AIH? I am just curious. I

have had it for over three years and so far it is being controlled by

medication. I just don't know if it will eventually get worse, or if

medication will stop working.

Thanks, Mari

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In a message dated 2/3/01 9:12:24 AM Pacific Standard Time, helenehli@... writes:

HI, MY NAME IS HELEN. I HAVE AUTOIMMUNE HEPATITIS WHICH MY LIVER IS NOW

CIRHOSIS. I WAS JUST HOSPITALIZED FOR A WEEK WITH UPPER GI BLEEDING DUE

TO ESOPHUGUAL AND GASTRIC VARICES, PNEUMONIA. THE DOCTORS TRIED TO PUT

IN A TIPS SHUNT BUT WERE UNSUCCESSFUL DUE TO MY PORTAL VEIN BEING

TOTALLY CLOGGED. I'M NOW WAITING TO HEAR FROM THE LIVER TRANSPLANT

SPECIALIST ON MY OPTIONS. I FOUND YOUR GROUP AND THOUGHT IT WOULD HELP

SOME WITH MY FEARS AND QUESTIONS. I WOULD LOVE TO HEAR FROM ANY AND ALL

OF YOU ON THIS SUPPORT GROUP. HELEN

We're glad to hear from you, Helen. Harper

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MARI, I'VE HAD THIS FOR A LITTLE OVER TEN YEARS, I JUST HAD SOME TEST

AND THE DOCTORS THOUGTH I WAS DOING FINE UNTIL THIS HAPPENED. I DON'T

KNOW MUCH ABOUT THIS...BUT I'M LEARNING MORE AND MORE EVERY DAY. LETS

KEEP IN TOUCH. ANYTHING I LEARN I'LL LET YOU KNOW....HANG IN THERE

HELEN

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Welcome Helen. I hope you get good news.

Debbie (Tommy's Mom)

> [Original Message]

> From: <helenehli@...>

> < >

> Date: 2/3/01 12:05:50 PM

> Subject: [ ] NEW MEMBER

>

> HI, MY NAME IS HELEN. I HAVE AUTOIMMUNE HEPATITIS WHICH MY LIVER

> IS NOW

> CIRHOSIS. I WAS JUST HOSPITALIZED FOR A WEEK WITH UPPER GI BLEEDING

> DUE

> TO ESOPHUGUAL AND GASTRIC VARICES, PNEUMONIA. THE DOCTORS TRIED TO

> PUT

> IN A TIPS SHUNT BUT WERE UNSUCCESSFUL DUE TO MY PORTAL VEIN BEING

> TOTALLY CLOGGED. I'M NOW WAITING TO HEAR FROM THE LIVER TRANSPLANT

> SPECIALIST ON MY OPTIONS. I FOUND YOUR GROUP AND THOUGHT IT WOULD

> HELP

> SOME WITH MY FEARS AND QUESTIONS. I WOULD LOVE TO HEAR FROM ANY AND

> ALL

> OF YOU ON THIS SUPPORT GROUP. HELEN

>

>

>

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helenehli@... wrote:

> HI, MY NAME IS HELEN. I HAVE AUTOIMMUNE HEPATITIS WHICH MY LIVER IS NOW

> CIRHOSIS. I WAS JUST HOSPITALIZED FOR A WEEK WITH UPPER GI BLEEDING DUE

> TO ESOPHUGUAL AND GASTRIC VARICES, PNEUMONIA. THE DOCTORS TRIED TO PUT

> IN A TIPS SHUNT BUT WERE UNSUCCESSFUL DUE TO MY PORTAL VEIN BEING

> TOTALLY CLOGGED. I'M NOW WAITING TO HEAR FROM THE LIVER TRANSPLANT

> SPECIALIST ON MY OPTIONS. I FOUND YOUR GROUP AND THOUGHT IT WOULD HELP

> SOME WITH MY FEARS AND QUESTIONS. I WOULD LOVE TO HEAR FROM ANY AND ALL

> OF YOU ON THIS SUPPORT GROUP. HELEN

>

>

>

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  • 3 weeks later...

shelbyncus@... wrote:

> Hello group, I am new to this group. I was diagnosis with Auntoimune

> Hepatitis about 4 months ago. I take prednisone 20 mg (I am stepping

> down) and take Imuran, I take a water pill for swelling, wellbutrin,

> folic acid, and several other pills to combact waht the steriods are

> doing to me. My counter looks like a small medicine shop. I am 29 and

> dealing with this is very hard for me. I was not a light weight when

> I started the steriods and I sure am not now. I have gained 30lbs in

> 4 months. Could someone tell me if there is any hope of losing this

> weight? I heard that a low-carb diet will help but I am not sure

> what is right now. Could someone tell me if they have any success

> with weight loss? Thank you

>

> Shelby

>

>

>

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Good Morning,

I am a new member to the group. The reason I have joined is that one

of my room mates is in the hospital for cirrhosis of the liver (CL).

She and her boyfriend moved in last month and we have become the best

of friends.

This past Friday we had to call the paramedics because she was

vomiting blood. Upon admission to the hospital it was found that

her ammonia level was at 166 and her blood pressure was very low.

They have her on lactalose (spelling?), four times a day; have

administer blood plattlets and paxcells since admission. They are

also giving her morphine twice a day. She also suffers from Hepititus

C and bipoloar depression and a heart murmur.

Knowing very little about her medical problems, her boyfriend and I

hope to be able to get a crash course from our new friends on this

list. Before I forget it, my name is , the patient's name is

and her boyfriend's name is Gregg. I will be showing Gregg how

to use my PC so he can contact you directly when he has questions, but

more important, when looking for moral support like right now.

The bleeding from the esophagus has stopped as of Sunday, and the

main concern right now from the hospital is the ammonia level. Her

blood pressure has returned to nomal.

Some of the questions Gregg and I have right now is alternative

treatments for ammonia, suggested foods to eat, vitamins, minerals,

herbs and supplements.

If any of you belong to or know of prayer chains, we ask that you

place and Gregg on them.

Thanks for your time, take care and God Bless,

Gregg

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......Excess ammonia can lead to a dangerous condition Known as

encephalopathy. It is rthe result of the liver`s inability to metabolize

proteins.

The bleeding can raise the levels of unprocessed proteins as the blood

in her stomach contains such. Why is she being given morphine? That

would seem to be dangerous to one with encephalopathy.

Encephalopathy`s end result is coma.

The treatment for this condition is Lactulose and eliminating most

`proteins from the diet. The bleeding varices should be treated also by

endoscopic procedures

such as sclerotherapy or banding or even the placement of a shunt and

perhaps blood pressure meds. and some vitamin K. These 2 conditions are

indicative of advanced liver disease..cirrhosis. I`m not

a doctor but I really question the morphine. bleeding varices and

enephalopathy aren`t associated wih pain

and morphine sounds couterindicative and dangerous to me.

Jerry

Transplanted 1995

due to end stage cirrhosis

Good Morning,

I am a new member to the group. The reason I have joined is that one

of my room mates is in the hospital for cirrhosis of the liver (CL).

She and her boyfriend moved in last month and we have become the best

of friends.

This past Friday we had to call the paramedics because she was

vomiting blood. Upon admission to the hospital it was found that

her ammonia level was at 166 and her blood pressure was very low.

They have her on lactalose (spelling?), four times a day; have

administer blood plattlets and paxcells since admission. They are

also giving her morphine twice a day. She also suffers from Hepititus

C and bipoloar depression and a heart murmur.

Knowing very little about her medical problems, her boyfriend and I

hope to be able to get a crash course from our new friends on this

list. Before I forget it, my name is , the patient's name is

and her boyfriend's name is Gregg. I will be showing Gregg how

to use my PC so he can contact you directly when he has questions, but

more important, when looking for moral support like right now.

The bleeding from the esophagus has stopped as of Sunday, and the

main concern right now from the hospital is the ammonia level. Her

blood pressure has returned to nomal.

Some of the questions Gregg and I have right now is alternative

treatments for ammonia, suggested foods to eat, vitamins, minerals,

herbs and supplements.

If any of you belong to or know of prayer chains, we ask that you

place and Gregg on them.

Thanks for your time, take care and God Bless,

Gregg

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Hi and Gregg,

I feel for your friend this is a new way of life for her. It also

affects everyone around her. Takes more understanding and strength because

this can be very frustrating. I take it is very confused with her

ammonia level so high. It will be very important to follow what her doctor

tells her to do. She should ask lots of questions from her doctors and

nurses. I am not in favor what so ever of using herbs of any kind. There is

no proven evidence that herbs do anything to help. Liver disease is personal

and unique. There are ways she needs to learn and follow to begin to feel

better.

gayle trans/6-99 ^oo^

galye@...

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Hi and Gregg,

I feel for your friend this is a new way of life for her. It also

affects everyone around her. Takes more understanding and strength because

this can be very frustrating. I take it is very confused with her

ammonia level so high. It will be very important to follow what her doctor

tells her to do. She should ask lots of questions from her doctors and

nurses. I am not in favor what so ever of using herbs of any kind. There is

no proven evidence that herbs do anything to help. Liver disease is personal

and unique. There are ways she needs to learn and follow to begin to feel

better.

gayle trans/6-99 ^oo^

galye@...

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wrote:

> Good Morning,

>

> I am a new member to the group. The reason I have joined is that one

> of my room mates is in the hospital for cirrhosis of the liver (CL).

> She and her boyfriend moved in last month and we have become the best

> of friends.

>

> This past Friday we had to call the paramedics because she was

> vomiting blood. Upon admission to the hospital it was found that

> her ammonia level was at 166 and her blood pressure was very low.

> They have her on lactalose (spelling?), four times a day; have

> administer blood plattlets and paxcells since admission. They are

> also giving her morphine twice a day. She also suffers from Hepititus

> C and bipoloar depression and a heart murmur.

>

> Knowing very little about her medical problems, her boyfriend and I

> hope to be able to get a crash course from our new friends on this

> list. Before I forget it, my name is , the patient's name is

> and her boyfriend's name is Gregg. I will be showing Gregg how

> to use my PC so he can contact you directly when he has questions, but

> more important, when looking for moral support like right now.

>

> The bleeding from the esophagus has stopped as of Sunday, and the

> main concern right now from the hospital is the ammonia level. Her

> blood pressure has returned to nomal.

>

> Some of the questions Gregg and I have right now is alternative

> treatments for ammonia, suggested foods to eat, vitamins, minerals,

> herbs and supplements.

>

> If any of you belong to or know of prayer chains, we ask that you

> place and Gregg on them.

>

> Thanks for your time, take care and God Bless,

>

>

> Gregg

>

>

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Guest guest

I'm no expert, like you, just learning. I have read on numerous sites,

however, that most doctors might be a little underinformed when it comes ot

parasites. Ihave read that we probably have many more kinds of parasites

than most doctors realize, and that psyllium and flax seed oil might be

helpful in getting rid of some, those kinds of things don't get rid of most

kinds. Not to burst your bubble, and not to directly dispute your doctor,

only passing on what I have learned on various sites about bowel cleansing in

general, and about parasites. I believe for MOST, one will have success

using (in the correct manner and in the correct dosage and in the correct

time) Wormwood, Black Walnut, and Cloves. Cayenne and cascara sagrada are

also thought to be helpful with parasites. Good luck.

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Guest guest

<< Cayenne and cascara sagrada are

also thought to be helpful with parasites. Good luck. >>

, I read somewhere that Senna Tea also has an effect on them.

Christel

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Guest guest

Thank you for your post. I feel you're right about the information

and I will look into the other remedies, they seem familiar, I've read

of them too. I'm seriously considering your suggestion. Thank you

very much for your advice.

Sincerely,

Feather

> I'm no expert, like you, just learning. I have read on numerous

sites,

> however, that most doctors might be a little underinformed when it

comes ot

> parasites. Ihave read that we probably have many more kinds of

parasites

> than most doctors realize, and that psyllium and flax seed oil

might be

> helpful in getting rid of some, those kinds of things don't get rid

of most

> kinds. Not to burst your bubble, and not to directly dispute your

doctor,

> only passing on what I have learned on various sites about bowel

cleansing in

> general, and about parasites. I believe for MOST, one will have

success

> using (in the correct manner and in the correct dosage and in the

correct

> time) Wormwood, Black Walnut, and Cloves. Cayenne and cascara

sagrada are

> also thought to be helpful with parasites. Good luck.

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Guest guest

Dear pjbignose (do you have another name you'd like us to use?), welcome to the group.

No, AIH isn't fun. And, yes, there are many worse things to have. You're on what seems to me to be a relatively low dosage, which may mean your disease isn't severe, and it may mean that the side effects won't be bad. Or, it may just reflect your doctor's approach!

Apparently you've done research, have resources, but, in addition, Palmer's and Gorman's liver disease books are good to have on hand.

Best wishes.

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Guest guest

Hi. What is your name? My son was just diagnosed with AIH this past

January. I'm still getting over the emotional side effects. It is very

hard. There are lots of great people here who help. They help with info,

venting, joy. It must be hard working on your nursing degree with a child

to take care of. Nurses are in great demand. UNC was just complaining that

they have beds available but not enough nurses to staff them. They are even

bringing down Canadian nurses. Again welcome. Are you having any problems

with side effects of the AIH right now?

Debbie (Tommy's Mom)

> [Original Message]

> From: <Pjbignose2@...>

> < >

> Date: 3/13/01 10:27:11 AM

> Subject: [ ] New Member

>

> Hi Everyone!

>

> I am so glad that I found your support group! I am 33 years old

and

> have been recently diagnosed with Autoimmune Hepatitis as of two weeks

ago.

> My doctor told me that I could be diagnosed with worse conditions, but

that

> does not alleviate the intense fear that I have been feeling. As of

> yesterday, I began treatment by taking Imuran 50mg, and Prednisone 10mg,

> twice a day .

> On top of being diagnosed with this, I am also in my last semester

of

> Nursing School. While searching through all of my nursing books, I could

not

> believe that they had absolutely no information regarding AIH. I was

able to

> find out the majority of info from the internet (luckily) and from my GI

> doctor. I am so scared! I am not sure if it is because I do not know

what

> the future holds for me as far as it getting better or worse, or if I am

> afraid of what the medication side effects can potentially do. I have

been

> working towards earning my degree in Nursing for the past six years, and

> quite frankly, I don't want to be a patient, I want to " take care " of

> patients! I've been having quite the pity party for the past couple

weeks.

> I am so lucky that I have amazing support from my husband, family,

> friends, and most of all, the joy that my 9 year old daughter gives to

me.

> She knows how to brighten my day, even when I am at my lowest point. Now

I

> have found this support group. As I read the e-mails that have been sent

to

> me I know that I am not alone. Without everyone I would be lost! If

anyone

> would like to shed a little more light on this subject as far as the side

> effects, emotions, fear, and experiences, please share them with me. I

would

> be sincerely grateful.

> Thanks for letting me share!

>

--- Have a fun day!

--- debbiehenry@...

---

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