Confused

[Guest guest]

In a message dated 12/17/00 4:37:49 AM Pacific Standard Time, DnA1970@... writes:

He said that if I wanted to feel better in a week I could take steriods and I would be all well in a week.

DnA, I'm not, not, not a medically astute person, and I have no medical training at all, didn't even know where my liver was until May. However, the above sounds frighteningly off. Don't let this situation slide. If you do have a liver problem, you can't waste time. I KNOW you don't get well in a week from AIH. And, if you don't get treatment, you die.

Harper (AIH 5/00)

[Guest guest]

It sure sounds to me like AIH but I am no DR. You should probably stick with one

DR. that you trust so he/she can get you on the right track before it get out of

hand. Are you on Prednisone ? What a fun drug. JUST KIDDING. Hope this helps.

Heidi in PA

> egroups

>From: DnA1970@...

>Date: Sun, 17 Dec 2000 12:37:00 -0000

>Reply- egroups

>Subject: [ ] confused

>

>This is my first time writing or viewing your support group web site.

>I am completely overwhelmed with everything at this point. I have

>been suffering with server fatigue and general unwellness for 3

>months. I have been to several doctors, 1st. one (gastro)unsure if I

>have Autoimmune hep, but thought that I might so he wanted to treat

>me with steriods. 2nd doctor (also gastro)thought yes, AIH at first

>thought, than not sure (my liver blood test are normal at this time).

> He thought possible Lupus or MS. HE sent me to a 3rd doctor. He

>very quickly after no additional test, quick exam, no questions asked

> told me I have AIH. He said to take Celebrex and in 3 months i will

>be fine. (Ok now I have been doing a little reading and that just

>doesn't sound true.) He said that if I wanted to feel better in a

>week I could take steriods and I would be all well in a week.

>The only thing that I know is that sometimes I feel as though I am

>dying, as though I am crazy because there are times I feel like I

>could get up an dance and than I feel like I won't make it though the

>new year. I am so confused I don't know if I should listen to any of

>them are try to find a new doctor.

>First blood work show liver function at sgot 774 and sgpt 680

>bilirubin total 0.9

>after a few weeks liver functions went back down to normal

>I have had a biopsy no evidence of chronic hep. but told that it was

>inconclusive because it showed some undetermined inflamation. Blood

>work ANA is positive. Everything else is Neg.

>The last doctor said that because of the ANA positive (4 x normal

>range) that I have AIH. and because of the high liver functions. He

>added that my I should restrict my intake of red meat, salt, sugar,

>and caffine. He took me off work for 3 months. He said that in 1 to

>2 months if I am not feeling much better that he would start me on

>low

>amounts of steroids, than if that is doesn't help than he would use

>an

>additional med. (don't have the name with me)

>

>Is this illness so confusing, I know I am very confused at this time.

>I am sorry if this is long and wordy. I think it has helped just for

>me to write it out. If some one has the time to read all this and

>give me their view of this, I would be very greatful for the input.

>(Please forgive typo's I am not a typist for sure)

>

>

>

>

[Guest guest]

Sounds like you live somewhere that is populated by those who finished

last in thier class in med school Where do you live? contact ALF for

list of QUALIFIED

hepatolgists in your area or go somewhere that has some. The biopsy

should have given some clue as to what you have if it be liver related.

That 3rd doctor sounds like he got his degree from clown school.

Remember AIH is CHRONIC, has no cure, and left untreated will result in

cirrhosis, eventually to end stage. Celebrex?

why don`t you just take Advil--- cost less.

Not all liver disease is AIH and not all ailments are liver diseases.

Best find out what you have 1st so you can treat it..

A positive ANA is an indication of lupus as well as other types of

autoimmune ailments and not just AIH. I was under the immpression that a

biopsy can be SPECIFIC for whatever liver condition is suspected. You

haven`t mentioned joint pain or any other symptoms you may have-- what

are they? As far as I know no one in this group is a medical doctor and

even if he/she were can`t (shouldn`t) diagnose via cyberspace.That

being said....know that every one here wants to help you..and we hope

you stay around..

I also hope you find a doctor who knows what he`s doing.

What`s your name and where do you live... we have people here from

around the country who can help recommend physicians and specialists in

thier area.

Good luck

Jerry

AIH

This is my first time writing or viewing your support group web site.

I am completely overwhelmed with everything at this point. I have

been suffering with server fatigue and general unwellness for 3

months. I have been to several doctors, 1st. one (gastro)unsure if I

have Autoimmune hep, but thought that I might so he wanted to treat

me with steriods. 2nd doctor (also gastro)thought yes, AIH at first

thought, than not sure (my liver blood test are normal at this time).

He thought possible Lupus or MS. HE sent me to a 3rd doctor. He

very quickly after no additional test, quick exam, no questions asked

told me I have AIH. He said to take Celebrex and in 3 months i will

be fine. (Ok now I have been doing a little reading and that just

doesn't sound true.) He said that if I wanted to feel better in a

week I could take steriods and I would be all well in a week.

The only thing that I know is that sometimes I feel as though I am

dying, as though I am crazy because there are times I feel like I

could get up an dance and than I feel like I won't make it though the

new year. I am so confused I don't know if I should listen to any of

them are try to find a new doctor.

First blood work show liver function at sgot 774 and sgpt 680

bilirubin total 0.9

after a few weeks liver functions went back down to normal

I have had a biopsy no evidence of chronic hep. but told that it was

inconclusive because it showed some undetermined inflamation. Blood

work ANA is positive. Everything else is Neg.

The last doctor said that because of the ANA positive (4 x normal

range) that I have AIH. and because of the high liver functions. He

added that my I should restrict my intake of red meat, salt, sugar,

and caffine. He took me off work for 3 months. He said that in 1 to

2 months if I am not feeling much better that he would start me on

low

amounts of steroids, than if that is doesn't help than he would use

an

additional med. (don't have the name with me)

Is this illness so confusing, I know I am very confused at this time.

I am sorry if this is long and wordy. I think it has helped just for

me to write it out. If some one has the time to read all this and

give me their view of this, I would be very greatful for the input.

(Please forgive typo's I am not a typist for sure)

[Guest guest]

Jerry you made some real good points, My first red flag to her clown drs where perscribing celebrex with High liver counts. My doctors stop that med first when my counts go up (i take it for Lupus) because celebrex is harsh on the liver.

Christi

[Guest guest]

> told me I have AIH. He said to take Celebrex and in 3 months i

will

> be fine. (Ok now I have been doing a little reading and that just

> doesn't sound true.) He said that if I wanted to feel better in a

> week I could take steriods and I would be all well in a week.

I am certainly not medically trained either but my doc took me off my

Celebrex when I was diagnosed. It can cause liver damage. All

reading I've done has upheld what my doc said. Hope everything turns

out OK. Yes, AIH is confusing!

Debbie/FL

[Guest guest]

I certainly can see what led to your confusion. Jerry was on the money

about that last doc... if they havent ruled out liver disease and

prescribing Celebrex? (even the TV commercials for Celebrex tell you

its toxic to the liver!) There are so many different autoimmune

disorders and treatment which works for one may be harmful for

another. Get another opinion and get it checked out. Good luck and

let us know how you are doing.

> This is my first time writing or viewing your support group web

site.

> I am completely overwhelmed with everything at this point. I have

> been suffering with server fatigue and general unwellness for 3

> months. I have been to several doctors, 1st. one (gastro)unsure if I

> have Autoimmune hep, but thought that I might so he wanted to treat

> me with steriods. 2nd doctor (also gastro)thought yes, AIH at first

> thought, than not sure (my liver blood test are normal at this

time).

> He thought possible Lupus or MS. HE sent me to a 3rd doctor. He

> very quickly after no additional test, quick exam, no questions

asked

> told me I have AIH. He said to take Celebrex and in 3 months i

will

> be fine. (Ok now I have been doing a little reading and that just

> doesn't sound true.) He said that if I wanted to feel better in a

> week I could take steriods and I would be all well in a week.

> The only thing that I know is that sometimes I feel as though I am

> dying, as though I am crazy because there are times I feel like I

> could get up an dance and than I feel like I won't make it though

the

> new year. I am so confused I don't know if I should listen to any of

> them are try to find a new doctor.

> First blood work show liver function at sgot 774 and sgpt 680

> bilirubin total 0.9

> after a few weeks liver functions went back down to normal

> I have had a biopsy no evidence of chronic hep. but told that it was

> inconclusive because it showed some undetermined inflamation. Blood

> work ANA is positive. Everything else is Neg.

> The last doctor said that because of the ANA positive (4 x normal

> range) that I have AIH. and because of the high liver functions. He

> added that my I should restrict my intake of red meat, salt, sugar,

> and caffine. He took me off work for 3 months. He said that in 1

to

> 2 months if I am not feeling much better that he would start me on

> low

> amounts of steroids, than if that is doesn't help than he would use

> an

> additional med. (don't have the name with me)

>

> Is this illness so confusing, I know I am very confused at this

time.

> I am sorry if this is long and wordy. I think it has helped just

for

> me to write it out. If some one has the time to read all this and

> give me their view of this, I would be very greatful for the input.

> (Please forgive typo's I am not a typist for sure)

[Guest guest]

It can certainly be confusing. One of the problems is that for most autoimmune diseases, there are no tests that are 100% conclusive. Most diagnoses come from looking at a combination of results and symptoms that "suggest" a probable diagnosis. Blood tests are helpful in identifying which, if any, autoantibodies you might have. Auto, or self-antibodies, are those cells that attack certain parts of our bodies. For many, a 3-4x ANA, positive anti-smooth muscle, and a positive biopsy are evidence of AIH. But, not all with AIH have that combination. Some have a negative ANA. Others have a different antibody. Biopsies show damage and inflammation and patterns of cell damage that is indicative of AIH. But, biopsies show damage, and are really not very good at determining what is causing the damage. For one thing, the liver is very large and the biopsy is very small. It's not uncommon for biopsies taken from different areas to show a different degree and pattern of damage. Two different pathologists may "read" the slides differently, depending on their experiences.

So...the most important thing is to be seen by a Hepatologist, a gastroenterologist with a further specialty in liver diseases. Make sure he/she sees a lot of AIH. AIH is a relatively new disease and is still poorly understood. Only someone who sees a lot of it will be able to make a good diagnosis. Others will just be guessing.

It, or any of the other illnesses that may be causing your symptoms are very treatable. But non treatment or the wrong treatment can cause irreparable harm. I know many people who travel very long distances to make sure their doctor is familiar with AIH. It's your life, you owe it to yourself to make sure you get the best treatment.

I'm speaking from experience. I spent 3 years with improper treatment before I finally went to the Mayo in Minnesota. Those 3 years saw me go from bad to worse. I could barely walk 50 yards with being exhausted when I went to Mayo. Today, I'm feeling much, much better. Though, we're still not 100% sure whether it's AIH or something else causing the liver damage....

Don

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

-----Original Message-----From: DnA1970@... [mailto:DnA1970@...]Sent: Sunday, December 17, 2000 6:37 AM egroupsSubject: [ ] confusedThis is my first time writing or viewing your support group web site. I am completely overwhelmed with everything at this point. I have been suffering with server fatigue and general unwellness for 3 months. I have been to several doctors, 1st. one (gastro)unsure if I have Autoimmune hep, but thought that I might so he wanted to treatme with steriods. 2nd doctor (also gastro)thought yes, AIH at first thought, than not sure (my liver blood test are normal at this time). He thought possible Lupus or MS. HE sent me to a 3rd doctor. He very quickly after no additional test, quick exam, no questions asked told me I have AIH. He said to take Celebrex and in 3 months i will be fine. (Ok now I have been doing a little reading and that just doesn't sound true.) He said that if I wanted to feel better in a week I could take steriods and I would be all well in a week.The only thing that I know is that sometimes I feel as though I am dying, as though I am crazy because there are times I feel like I could get up an dance and than I feel like I won't make it though the new year. I am so confused I don't know if I should listen to any of them are try to find a new doctor. First blood work show liver function at sgot 774 and sgpt 680 bilirubin total 0.9 after a few weeks liver functions went back down to normalI have had a biopsy no evidence of chronic hep. but told that it was inconclusive because it showed some undetermined inflamation. Blood work ANA is positive. Everything else is Neg.The last doctor said that because of the ANA positive (4 x normal range) that I have AIH. and because of the high liver functions. He added that my I should restrict my intake of red meat, salt, sugar, and caffine. He took me off work for 3 months. He said that in 1 to 2 months if I am not feeling much better that he would start me onlow amounts of steroids, than if that is doesn't help than he would usean additional med. (don't have the name with me) Is this illness so confusing, I know I am very confused at this time. I am sorry if this is long and wordy. I think it has helped just for me to write it out. If some one has the time to read all this and give me their view of this, I would be very greatful for the input. (Please forgive typo's I am not a typist for sure)

[Guest guest]

I get red flags right away when ANYONE says " their way is the only way " -

and the other 'typical' line " herbs and naturopaths don't work " .... there is

lots of info on line regarding prescription meds AND natural meds. On one

site - there is a comparison list - of every single med used with patients

and the long-term results. This is a very very interesting

comparison/analysis. Why don't you check it out? Its at

www.wholeapproach.com and when you are on the home page click on " comparison

of Candida treatment " ...

wendy

[Guest guest]

Hi Stacey,

> candida is gone. A guy from another candida forum told me that I am

> wasting my money by going to a naturopath and says that herbs are not

> strong enough to kill yeast

I don't agree with this - I'm taking herbal antifungals (grapefruit seed

extract and caprylic acid) and having phenomenal results from

them, and I know many people who've rid themselves of candida

entirely without ever taking prescription antifungals.

> and that I need to seek the help of his MD

His MD specifically? This sounds dubious to me. Maybe this

person has had brilliant results and is on a 'this way is the only

way' trip as a result - this is all well and good, but we're all different,

and not all of us respond well to prescription AFs. Personally, I've

only ever had two brief attempts at treatign my candida with

diflucan, and neither made a blind bit of difference. With

prescription AFs you also get the problem of resistance - how

many GPs/MDs will write out four differnt prescriptions so you can

rotate them? I prefer the herbal route because I'm on control of it,

and I know I'm not going to get walloped by weird side-effects.

> Someone, please help. I am very confused, yet

> desperate to get well.

I sympathise - I guess all of us here do. I really don't think you're

wasting your money on homeopathy - I don't know where I'd be

without my homeopath, because he chooses treatments that are

right for ME, not for the general population, and looks at how they

interact with my own personal body chemistry, personality,

immune system, even childhood factors.

How stric is your diet? Are yo utakign digestive enzymes with each

meal? This one simple thing made all the difference to me - before,

I wasn't digesting my food, it was fermenting, I was swimming in

alcohols and acetaldehydes, and I felt like death on legs. A month

on high-quality enzymes did wonders for me. On a related note,

we're all currently going molybdenum crazy - it's a mineral

supplement which helps rid your body of the by-products of

candida. Drink as much water as you can as well.

You don't mention probiotics - I can't emphasise enough how vital

they are. Killing the yeast is no good if it has room to grow back -

you MUST take a really good quality probiotic supplement with a

variety of strains of good bacteria, to rebalance your intestinal

ecosystem.

Herbs DO work for many, many people, so you're not wasting

money on them. I'd be inclined to stick wth your current approach

for a while longer, brace yourself for die-off, and see how you get

on. This treatment is always a bit disheartening to start with - no

instant results, and then along comes the die-of and you feel worse

than ever! It's worth persevering with, though. Stick with us,

whatever you decide to do, and we'll all cheer you on!!

Ann

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

http://www.willow-web.net Quality Web Design

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

[Guest guest]

, I was helped by a homeopathic

doctor that used many approaches to

ridding candida. He picked out the

medicine that responded to my system.

He did not chose to give me these herbs

to treat them. Thats why I am surprised

to see many people on this board responding

to herbs that did not help me.

The medicine of choice was Nystatin, it's

an antifungal and doesn't have unsafe side

effects. It works fast. I would put my money

in this treatment first because I responded

so well on it, just my opinion. I see

treating the system with herbs on the side

of maintenance. It's really important to get

the body as a whole adjusted to the proper

PH, adding enzymes......

I am sure our members will post their fantastic

results to you on herbs, But I would go through

both medical approaches to get well. Medicine

alone will not correct the bodies physical and

nutritional imbalance.

LIZ

Confused

Hello all. My name is Stacey and this is my first time here. I

recently went to a homeopath who told me that I have Candiasis. She

prescribled A special remedy, Candistatin and Oil of Oregano. She put

me on a yeast-free diet and told me to come back in a month after the

candida is gone. A guy from another candida forum told me that I am

wasting my money by going to a naturopath and says that herbs are not

strong enough to kill yeast and that I need to seek the help of his

MD in Washington (I'm in Michigan) so that I can be prescribed some

prescription antifungals. I realize that it is going to take longer

than a month to get well but do herbs really help? Do prescription

antifungals work faster? I have been utterly miserable and

considered "crazy" for years because of my numerous debilitating

symptoms. If I need prescription medications, I don't have the money

to waste going to the homeopath. Great Smokies Laboratory sent me a

list of doctors in my area who treat candida and one on the list

accepts the medical insurance that I have. Someone, please help. I am

very confused, yet desperate to get well. I have been suffering for

12 years and would finally like to enjoy my family and life in

general. Thank you.

[Guest guest]

Hi Liz,

I have to disagree about Nystatin not having any side affects, everything

I have read about Nystatin is that it is really bad for the liver and kidneys!

Rabbitbrain@... wrote:

, I was helped

by a homeopathicdoctor that used many approaches

toridding candida. He picked out

themedicine that responded to my system.He

did not chose to give me these herbsto

treat them. Thats why I am surprisedto

see many people on this board respondingto

herbs that did not help me. The medicine

of choice was Nystatin, it'san antifungal

and doesn't have unsafe sideeffects. It

works fast. I would put my moneyin this

treatment first because I respondedso well

on it, just my opinion. I seetreating

the system with herbs on the sideof maintenance.

It's really important to getthe body as

a whole adjusted to the properPH, adding

enzymes...... I am sure our members

will post their fantasticresults to you

on herbs, But I would go throughboth medical

approaches to get well. Medicinealone

will not correct the bodies physical andnutritional

imbalance. LIZ

Confused

Hello all. My name is Stacey and this is my first time

here. Irecently went to a homeopath who told me that

I have Candiasis. Sheprescribled A special remedy,

Candistatin and Oil of Oregano. She putme on a yeast-free

diet and told me to come back in a month after thecandida

is gone. A guy from another candida forum told me that I amwasting

my money by going to a naturopath and says that herbs are notstrong

enough to kill yeast and that I need to seek the help of hisMD

in Washington (I'm in Michigan) so that I can be prescribed someprescription

antifungals. I realize that it is going to take longerthan

a month to get well but do herbs really help? Do prescriptionantifungals

work faster? I have been utterly miserable andconsidered

"crazy" for years because of my numerous debilitatingsymptoms.

If I need prescription medications, I don't have the moneyto

waste going to the homeopath. Great Smokies Laboratory sent me alist

of doctors in my area who treat candida and one on the listaccepts

the medical insurance that I have. Someone, please help. I amvery

confused, yet desperate to get well. I have been suffering for12

years and would finally like to enjoy my family and life ingeneral.

Thank you.

[Guest guest]

Read your information very closely. Nystatin is very safe, I am posting a

site that has some message board questions and answers regarding Nystatin.

It is Nizoral that can cause liver and kidney damage. This is why you need

blood test for liver enzymes before and during the first week on this medicine.

http://www.bcn.net/~stoll/archives/liver/4408.html

I have been on a few natural health sites that bash any kind of drug therapy.

They seem to want us to pay $40.00 a bottle for their concoctions. I have

to respond to how well Nystatin powder has been with my treatment. If I come

across some natural product that works just as well, or even half as well

as Nystatin did, I will post it. But don't just kick this product to the curb.

I would like to say that I took this in powder form. It really grabbed the

yeast in my stomach as well as my intestines. It can be used as a small

enema overnight and a douche, and I even rubbed some in my itchy ears.

The powder works better than the tablets.

http://www.coem.com/connectv1n2antifungal.htm

http://www.nutritioninstitute.com/1.html This site was interesting, posted

this:

Why take Nystatin? This is a prescription medication that is not absorbed and kills the yeast living in the intestinal tract. Then the yeast can no longer make the toxic chemical compounds.

Fortunately, because nystatin is not absorbed, nystatin causes no side effects except for a little nausea. No harmful side effects have ever been caused by the use of nystatin.

The only risk of this therapy is a little initial nausea, in some people, and some inconvenience.

I hope this information is more informative.

LIZ

***************

Hi Liz, I have to disagree about Nystatin not having any side affects, everything I have read about Nystatin is that it is really bad for the liver and kidneys!

[Guest guest]

stacey - go to www.wholeapproach.com and go to the comparison page of

different methods of dealing with candida. prescription meds have a higher

'return' rate of candida - and 'generally speaking' people have not found a

real answer until they start to clean out the colon. The colon is the

'breeding grounds' for the candida... so though your Nizoral may 'knock off'

some buds and some candida in different areas - it will not get at the

source. If you follow a program such as candida busters or the

www.wholeapproach.com program it will work from the root cause. You may

also be interested in getting colonic hydrotherapy done - or other ways to

flush your colon.

Drinking 1/2 your body weight a day in ounces of pure water and eating a

LIVE food diet - no sugar/white flour products, etc. will be absolutely

VITAL if you want to get well.

Unfortunately there is a 'view' out there that you can just 'pop a pill' and

get better... .and it is not the case.

sincerely

wendy

Confused

Hi, all. I am new to the group and I have a question. I have been

taking Nizoral for 5 weeks and have been on the diet ( really strict

version) for the past 3 weeks. The first few days after beginning the

diet, I experienced what I believed to be die-off (aching in legs,

headache, stuffiness, etc.). After a couple days, the die-off stopped

and my allergies and sensitivities improved about 80 %. I'm really

confused because I thought I was getting better but now I'm feeling

extra sensitive to chemicals and strong fragrances again. I've been

sticking to the diet faithfully so I don't know what's going on.

Anyone have any possible answers? Oh, yeah, last week, my doctor

decreased my Nizoral from 200mg one a day to 100mg one a day. Could

this be the cause?

Stacey

Send blank message to candidiasis-unsubscribeonelist if you want to

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[Guest guest]

I was told that you will go for a while and feel well, have die off;

go for a longer period of time feeling well, have die off again...

That chain continues until you feel better all the time. You are

probably experiencing more die off. It's all hard and confusing to

understand, but I think I'm finally getting it. We have good days and

bad days, but more good days are ahead of us!

Kim

> Hi, all. I am new to the group and I have a question. I have been

> taking Nizoral for 5 weeks and have been on the diet ( really strict

> version) for the past 3 weeks. The first few days after beginning

the

> diet, I experienced what I believed to be die-off (aching in legs,

> headache, stuffiness, etc.). After a couple days, the die-off

stopped

> and my allergies and sensitivities improved about 80 %. I'm really

> confused because I thought I was getting better but now I'm feeling

> extra sensitive to chemicals and strong fragrances again. I've been

> sticking to the diet faithfully so I don't know what's going on.

> Anyone have any possible answers? Oh, yeah, last week, my doctor

> decreased my Nizoral from 200mg one a day to 100mg one a day. Could

> this be the cause?

>

>

>

> Stacey

[Guest guest]

I think I have to agree with Kim. I keep hearing about the one-week die-off

thing, but I think it varies for everyone in duration and length. I am now

taking GSE, and it's really strong for me. I get little episodes of syptoms I've

had for 10 years when I have a dose of it. Sometimes heartburn,

indigestion, headaches (I don't normally have) and strong chest pains.

They are becoming less frequent, though.

I should state that I started treating myself in January and only started GSE a

week back.

Jonah

proulxk@... wrote:

> I was told that you will go for a while and feel well, have die off;

> go for a longer period of time feeling well, have die off again...

> That chain continues until you feel better all the time. You are

> probably experiencing more die off. It's all hard and confusing to

> understand, but I think I'm finally getting it. We have good days and

> bad days, but more good days are ahead of us!

>

> Kim

>

>

> > Hi, all. I am new to the group and I have a question. I have been

> > taking Nizoral for 5 weeks and have been on the diet ( really strict

> > version) for the past 3 weeks. The first few days after beginning

> the

> > diet, I experienced what I believed to be die-off (aching in legs,

> > headache, stuffiness, etc.). After a couple days, the die-off

> stopped

> > and my allergies and sensitivities improved about 80 %. I'm really

> > confused because I thought I was getting better but now I'm feeling

> > extra sensitive to chemicals and strong fragrances again. I've been

> > sticking to the diet faithfully so I don't know what's going on.

> > Anyone have any possible answers? Oh, yeah, last week, my doctor

> > decreased my Nizoral from 200mg one a day to 100mg one a day. Could

> > this be the cause?

> >

> >

> >

> > Stacey

>

>

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In a message dated 12/15/01 6:25:03 PM Pacific Standard Time, bamrand@... writes:

Hi Everyone!! I have a question, but I'm not sure how to even word it so I'll try my best. My doctor has been reducing my prednisone over the past couple of months, however, he has not been checking my enzymes with each reduction. (Is this how it is usually done?) Over the past two weeks I have been extremely exhausted forcing myself to do everything so I called him. He ran bloodwork again and my numbers came back higher than normal.. Not much, but I had gotten them back into the normal range within the first two weeks of diagnosis (9/01). Does this mean my body can't tolerate reducing the prednisone? I'm asking because my doc is doing nothing different and continueing to lower the prednisone. ( I am currently on 5 mg and will be completely off in 4 weeks). This is really my first dealing with this and I'm unsure of what to question and insist on. He isn't running my bloodwork again for another month. I am meeting with a new doctor on January 3rd and this info will also help me in "interviewing" him. Any info would be greatly appreciated. Thanks in advance. I'm also on 100mgs of Imuran.

Bethanne AIH 9/01

Bethanne, all I can tell you is how my doctor has handled my case for the past year and a half. I have blood work done at intervals, decreasing from twice a week at first to every two months now. I always, always had a lab test just before decreasing Prednisone to make sure the numbers were stable. My doctor strongly discourages AIH people from going off Prednisone entirely, saying every AIH patient he's had who has dropped Prednisone has had a relapse, and it's sometimes difficult or impossible to get "the numbers" back in control. He has about a dozen AIH patients. However, different doctors have different strategies, and you have the final decision, anyway.

Incidentally, I'm taking 100 mg Imuran. My GP attributes the esophageal fungus I have to the Imuran. I'll talk to my liver doc next week and see where things stand with the fungus/Imuran trade-off.

Harper

[Guest guest]

Get thee to a NEW DOCTOR FAST! My doctor reduced my prednisone to 5 mg, and my LFT's were up, so she upped my dose to 10 and they still were up. Then, since I could not tolerate the IMuran, she increased the pred to 15 and the labs were within normal range. She told me that 15 was the lowest I could go on for now, that I had to maintain 15 to keep my AIH at bay.

From everything (little as it has been, but as much as I can find and digest), doctors MUST follow the LFT's to see if your numbers are going up or down in order to find the correct dosage. I do hope you find someone else who can help.

Also, I read that when you decrease the pred to nothing, only a small percentage will go into remission, and that it means you need to go back....but that is just what I think it says....but I too am just learning!

debby

[ ] Confused

Hi Everyone!! I have a question, but I'm not sure how to even word it so I'll try my best. My doctor has been reducing my prednisone over the past couple of months, however, he has not been checking my enzymes with each reduction. (Is this how it is usually done?) Over the past two weeks I have been extremely exhausted forcing myself to do everything so I called him. He ran bloodwork again and my numbers came back higher than normal.. Not much, but I had gotten them back into the normal range within the first two weeks of diagnosis (9/01). Does this mean my body can't tolerate reducing the prednisone? I'm asking because my doc is doing nothing different and continueing to lower the prednisone. ( I am currently on 5 mg and will be completely off in 4 weeks). This is really my first dealing with this and I'm unsure of what to question and insist on. He isn't running my bloodwork again for another month. I am meeting with a new doctor on January 3rd and this info will also help me in "interviewing" him. Any info would be greatly appreciated. Thanks in advance. I'm also on 100mgs of Imuran.

Bethanne AIH 9/01

[Guest guest]

Harper,

Did the doc say how long it would take to clear up the fungus? OR do you think you will have to get off the Imuran to clear it up? I hope not. I know you don't want to have to play the numbers game again. Keep us updated. By the way, I did by Palmer's book per your advice. Thank you very much. It is a wealth of info. Thanks again,

Bethanne

[Guest guest]

Dear Bethanne,

Everytime they decreased my prednisone they always check LFT's. If they go

up they have either maintained the current dose of prednisone or increased it

depending on how high the LFT's were. I would check into why they are

continuing to decrease if LFT's are elevated. Always good to have more than

one opinion.

[Guest guest]

Harper,

I too had thrush when I was on Imuran. They put me on Diflucan. Had to take

the normal dose 3 times longer than most but did get rid of it. I am now on

Ceptcell because I had such major GI upsets on Imuran and am doing much

better in regard to GI problem. Cellcept seems to maintain LFT's as well as

Imuran. Neither have worked great. GI doc is upset that I'm not on Imuran

as this is the drug of choice, but Hepatologist says they use Cellcept a lot

for those of us who can not tolerate the Imuran with results that are just as

good for most people. Ask your MD about the Diflucan. It's in a pill form

and they also have a liguid if you have difficulty swallowing. It worked for

me.

[Guest guest]

In a message dated 12/16/01 12:47:58 PM Pacific Standard Time, MKANTZLE@... writes:

Harper,

I too had thrush when I was on Imuran. They put me on Diflucan. Had to take the normal dose 3 times longer than most but did get rid of it. I am now on Ceptcell because I had such major GI upsets on Imuran and am doing much better in regard to GI problem. Cellcept seems to maintain LFT's as well as Imuran. Neither have worked great. GI doc is upset that I'm not on Imuran as this is the drug of choice, but Hepatologist says they use Cellcept a lot for those of us who can not tolerate the Imuran with results that are just as good for most people. Ask your MD about the Diflucan. It's in a pill form and they also have a liguid if you have difficulty swallowing. It worked for me.

Yes, I'm on Diflucan. The GP had suggested something else until she learned it was in my esophagus as well as my throat. She's spoken of the problem as "fungus", but from reading, I know it must be thrush that's spread to the esophagus or candida esophageatis. I think I spelled that right.

My gastro-enterologist told me, when I was first diagnosed and not in good shape, that if Imuran with Prednisone didn't bring it under control he'd switch to CellCept, which I understood to be more powerful -- and more expensive. However, so far, so good with Imuran.

Harper

[Guest guest]

In a message dated 12/16/01 12:28:42 PM Pacific Standard Time, wafdaf@... writes:

From Bethanne:

I have a question, but I'm not sure > how to even word it so I'll try my best. My doctor has been reducing my prednisone over the past couple

> of months, however, he has not been checking my > enzymes with each reduction.

Bethanne, I keep thinking about your message. I've made one response, which I tried to keep non-judgmental. However, the more I think about it, you must insist on having a blood test before reducing dosage.

I remember one person wrote last year whose doctor simply set up a schedule many months in advance for dosages and reductions -- without, as I understood it, supporting lab tests. That horrified me then, and it does even more now that I know a little more.

Dosages are tricky and have to be tailored to your body as it changes.

Harper

[Guest guest]

Harper,

Yes Cellcept is about 3 times what Imuran is. I'm very lucky to have health

insurance which picks up cost except $30.00 Co-pay for this drug. I seem to

have tolerated the Cellcept much better than the Imuran. Hope all clears up

with the thrush as this can be quite uncomfortable.

[Guest guest]

In a message dated 12/16/01 1:11:44 PM Pacific Standard Time, MKANTZLE@... writes:

Yes Cellcept is about 3 times what Imuran is. I'm very lucky to have health insurance which picks up cost except $30.00 Co-pay for this drug. I seem to have tolerated the Cellcept much better than the Imuran. Hope all clears up with the thrush as this can be quite uncomfortable.

My HMO covers all but $5 for each prescription. This means that they are especially eager to use the most cost-effective drug. So far, for me, they've done pretty well in terms of not putting cost above good treatment. E.g., I get regular blood tests to monitor my situation, plus extra ones as needed. Bethanne, I hope you're reading this!

Harper

[Guest guest]

In a message dated 12/16/01 1:11:46 PM Pacific Standard Time, MKANTZLE@... writes:

.. I seem to have tolerated the Cellcept much better than the Imuran.

Dear :

Have you been on the Cellcept for very long? My doctor is thinking of trying me on Cellcept in the new year. I couldn't tolerate Imuran and have been on just prednisone for 7 years. They want to get me off of the prednisone because it's had devastating effects on my body over the years.

Do you have any negative side effects from the Cellcept? I've heard good and bad things about it. Any info would be appreciated. Thanks.

Kathy (AIH)

Seattle area