my diagnosis

[Guest guest]

i have tried that--didn't work--thank you though

[Guest guest]

use plain yoguart in the vaginal area...it will clear it up ..use it like

you would a douche plus put it all in like a creame as well..do it for a

week bet ya it gones...

my diagnosis

>From: melnlaney@...

>

>I would be very grateful for any input, advice or just knowing if anyone

else has this problem--I was diagnosed with atrophic erythematous

candidiasis--I basically have a vaginal yeast infection that will not go

away--i guess it is in my tissues and sometimes it can be cultured and other

times it shows negative. I am miserable and have been taking 200 mg of

diflucan for a month and show no change--also following the anti-yeast

diet--Please help!! I am just wondering when I might start to feel a little

relief after 7 mths of suffering and also if maybe the yeast if resistant to

the diflucan--I don't think i have ever had a die-off

>Also might it get worse during the second half of the month?

>

>>_

>

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[Guest guest]

,

The following procedure (in addition to the anti candida diet) alleviated my

persistent vaginal yeast infection:

I douched with Australian Tea Tree Oil ( 7 drops per 2 deciliter water ) every

12 hours for 4 consecutive days.

After this I switched to a 4 day long gapefruit seed extract douching . ( 7

drops / 2 dl water)

I alternated these two things until the symptoms eliminated. (The tea tree oil

was really very soothing)

Then I replaced the normal folic acid flora using a vaginal suppository named

" Ovulobact " for 10 days . (1pcs/day)

Now I do one irrigation every week with thin solution of Acidum Lacticum Dilutum

to maintain the acidity and to prevent the return of yeast.

(Anyhow I shall note, that my symptoms did not lessen while I used of birth

control pills.)

I wish you success !

beth

----------

From: melnlaney@...

I would be very grateful for any input, advice or just knowing if anyone else

has this problem--I was diagnosed with atrophic erythematous candidiasis--I

basically have a vaginal yeast infection that will not go away--i guess it is in

my tissues and sometimes it can be cultured and other times it shows negative.

I am miserable and have been taking 200 mg of diflucan for a month and show no

change--also following the anti-yeast diet--Please help!! I am just wondering

when I might start to feel a little relief after 7 mths of suffering and also if

maybe the yeast if resistant to the diflucan--I don't think i have ever had a

die-off

Also might it get worse during the second half of the month?

_

Subscription URL: /subscribe.cgi/candidiasis

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[Guest guest]

>From: melnlaneyxxx (DOT) xxx>

>I would be very grateful for any input, advice or just knowing if anyone

else has this problem--I was diagnosed with atrophic erythematous

candidiasis--I basically have a vaginal yeast infection that will not go

away--i guess it is in my tissues and sometimes it can be cultured and other

times it shows negative. I am miserable and have been taking 200 mg of

diflucan for a month and show no change--also following the anti-yeast

diet--Please help!! I am just wondering when I might start to feel a little

relief after 7 mths of suffering and also if maybe the yeast if resistant to

the diflucan--I don't think i have ever had a die-off

>Also might it get worse during the second half of the month?>

Definitely worse right before & right after your period! My doctor even told

me that!!! If yogurt didn't work for you, take a garlic pill capsule and prick

a small pinhole in it and insert into the vagina before bed. Next time take an

acidophillus pill and prick a couple of small pinholes in it and insert. (the

yeast gets smart so you have to alternate). It eased my symptoms - I had the

same chronic yeast infections and the diet wasn't totally helping. I was told

that a cider vinegar douche works well, but I didn't try it. I've been symptom

free for a month so far - I did a bowel cleanse (via herbs not fasting), and a

herbal system remedy that includes taking acidophillis. I believe someone else

has also mentioned cleansing - have you tried that?? Even if you have, try a

different one - I did two other cleanses before that didn't completely work, the

one I'm using now is incredible - different strokes for different folks!!

[Guest guest]

In a message dated 10/29/99 2:38:50 AM Central Daylight Time,

kathlyc@... writes:

<< From: melnlaneyxxx (DOT) xxx>

>I would be very grateful for any input, advice or just knowing if anyone

else has this problem--I was diagnosed with atrophic erythematous

candidiasis--I basically have a vaginal yeast infection that will not go

away--i guess it is in my tissues and sometimes it can be cultured and other

times it shows negative. I am miserable and have been taking 200 mg of

diflucan for a month and show no change--also following the anti-yeast

diet--Please help!! I am just wondering when I might start to feel a little

relief after 7 mths of suffering and also if maybe the yeast if resistant to

the diflucan--I don't think i have ever had a die-off

>Also might it get worse during the second half of the month?>

Definitely worse right before & right after your period! My doctor even told

me that!!! If yogurt didn't work for you, take a garlic pill capsule and

prick a small pinhole in it and insert into the vagina before bed. Next time

take an

acidophillus pill and prick a couple of small pinholes in it and insert. (the

yeast gets smart so you have to alternate). It eased my symptoms - I had the

same chronic yeast infections and the diet wasn't totally helping. I was

told that a cider vinegar douche works well, but I didn't try it. I've been

symptom

free for a month so far - I did a bowel cleanse (via herbs not fasting),

and a

herbal system remedy that includes taking acidophillis. I believe someone

else

has also mentioned cleansing - have you tried that?? Even if you have, try a

different one - I did two other cleanses before that didn't completely work,

the

one I'm using now is incredible - different strokes for different folks!!

Sir Winter speales highly of tea tree oil in his book on how he over

came

terminal cancer. He says 4 drops tea tree oil to 1,000 parts water used as

a douche.

Edith

[Guest guest]

In a message dated 11/10/99 10:02:58 AM Central Standard Time,

healthynut@... writes:

<< The one product that I know about is from East Park Research Inc. You

should

be able to find a distributor in England for this. I get mine from

www.otrecure.com They have a link at their site to the manufacturer's web

site.

Hope this helps,

>>

,

I've ordered this from another place but haven't received it yet. Have tried

another

brand but did not see any thing positive. Did you stay on the very

restrictive diet?

Edith

[Guest guest]

Dear ,

Are you out there still? I checked my e-mail (I don't have

it at home so can't look that often) and saw your e-mail in Oct about

atrophic erythematous candidiasis. How did you get your diagnosis? I

have exactly the same problem as you and believe me I understand how

miserable you are feeling. I have had a sore, swollen, burning itching

vagina for three years non-stop now. My doctor doesn't believe in

candidiasis and I've had swabs which show no traces of thrush so I think

she thinks it's psychosomatic! But I think it's in the tissues. My

doctor won't even order a cell test because she doesn't believe it's

possible to have cancida/thrush in this way. I've got an appt to see a

gynecologist but don't hold out much hope. All you people in the States

seem to have access to much more enlightened medical practitioners than

we do here in Britain. I too took Diflucan 150mg a day for 14 days with

no result. I have tried douching with live yoghurt, iodine solution, tea

tree oil, vinegar. I have been taking nystatin powder orally for a year

and a half. I am on a strict anti-candida diet (although I confess to a

lapse every six months or so which definitely sets everything back and I

know I have to find the will power not to lapse at any time for any

reason). I have tried nystatin cream and nystatin pessaries as well.

NOTHING will restore my vagina to normal. I'm 30 now and I just can't

bear the idea of never being able to enjoy having sex again for the rest

of my life. I have a lovely and understanding partner but I would like

to feel like a sexual whole person again. This thing affects your self

esteem and is so depressing. I live in the U.K so find it hard to get

hold of some of the products other people on this list are recommending

- like the Ambrotose. It is also a question of money. I am a student and

it seems that to have any hope of relief you have to pay thousands or at

least hundreds of pounds/ dollars. I have enough trouble paying the

bills and putting food on te table! Anyway - things which have helped

(it's all been a question of controlling the thing and getting some

relief) are sitting in basins of Dead Sea bath salts (seems to reduce

the swelling), some wierd herbs prescribed by a Chinese herbal medicine

practitioner (which you have to boil up and then douche with the

liquid). I know all about treating your sexual partner (mostly I'm too

sore to have sex anyway) and know I don't have any other condition which

could be responsible. This stuff is quite personal isn't it - I don't

think people without this problem understand sometimes just what

absolute hell it is to live with. Good luck with your search for a cure.

I'm not going to give up. I just don't know what to do next. Best wishes

to you and everyone out there wrestling with candida. P.S - any

suggestions?

.

[Guest guest]

Hi ,

I would like to start a recipe sharing on this list. If we had more things

to eat it would be nice. I will send some latter.

Myra

Re: my diagnosis

> From: J.C.G.@... ( )

>

> Dear ,

> Are you out there still? I checked my e-mail (I don't have

> it at home so can't look that often) and saw your e-mail in Oct about

> atrophic erythematous candidiasis. How did you get your diagnosis? I

> have exactly the same problem as you and believe me I understand how

> miserable you are feeling. I have had a sore, swollen, burning itching

> vagina for three years non-stop now. My doctor doesn't believe in

> candidiasis and I've had swabs which show no traces of thrush so I think

> she thinks it's psychosomatic! But I think it's in the tissues. My

> doctor won't even order a cell test because she doesn't believe it's

> possible to have cancida/thrush in this way. I've got an appt to see a

> gynecologist but don't hold out much hope. All you people in the States

> seem to have access to much more enlightened medical practitioners than

> we do here in Britain. I too took Diflucan 150mg a day for 14 days with

> no result. I have tried douching with live yoghurt, iodine solution, tea

> tree oil, vinegar. I have been taking nystatin powder orally for a year

> and a half. I am on a strict anti-candida diet (although I confess to a

> lapse every six months or so which definitely sets everything back and I

> know I have to find the will power not to lapse at any time for any

> reason). I have tried nystatin cream and nystatin pessaries as well..

> NOTHING will restore my vagina to normal. I'm 30 now and I just can't

> bear the idea of never being able to enjoy having sex again for the rest

> of my life. I have a lovely and understanding partner but I would like

> to feel like a sexual whole person again. This thing affects your self

> esteem and is so depressing. I live in the U.K so find it hard to get

> hold of some of the products other people on this list are recommending

> - like the Ambrotose. It is also a question of money. I am a student and

> it seems that to have any hope of relief you have to pay thousands or at

> least hundreds of pounds/ dollars. I have enough trouble paying the

> bills and putting food on te table! Anyway - things which have helped

> (it's all been a question of controlling the thing and getting some

> relief) are sitting in basins of Dead Sea bath salts (seems to reduce

> the swelling), some wierd herbs prescribed by a Chinese herbal medicine

> practitioner (which you have to boil up and then douche with the

> liquid). I know all about treating your sexual partner (mostly I'm too

> sore to have sex anyway) and know I don't have any other condition which

> could be responsible. This stuff is quite personal isn't it - I don't

> think people without this problem understand sometimes just what

> absolute hell it is to live with. Good luck with your search for a cure..

> I'm not going to give up. I just don't know what to do next. Best wishes

> to you and everyone out there wrestling with candida. P.S - any

> suggestions?

> .

>

> > _

>

> Subscription URL: /subscribe.cgi/candidiasis

>

>

> Send blank message to this e-mail address if you want to:

>

> TO UNSUBSCRIBE !!!!!!!!! :

>

> candidiasis-unsubscribeonelist

>

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> candidiasis-digestonelist

>

> To change status from digest to normal:

> candidiasis-normalonelist

>

> To subscribe:

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>

[Guest guest]

Dear ,

I have lived with candidia for many years. Although I didn't suffer from the

same symptoms as you, I sympathize with your situation. A friend of mine

introduced me to olive leaf extract. I am very pleased with the results I

have experienced. From what I have read it should work for you. It is

important to get a product that has a concentration R-calcium elenolate,the

effective ingredient in the olive leaf. It is stated as (R-Olea europaea)

The one product that I know about is from East Park Research Inc. You should

be able to find a distributor in England for this. I get mine from

www.otrecure.com They have a link at their site to the manufacturer's web

site.

Hope this helps,

Re: my diagnosis

> From: J.C.G.@... ( )

>

> Dear ,

> Are you out there still? I checked my e-mail (I don't have

> it at home so can't look that often) and saw your e-mail in Oct about

> atrophic erythematous candidiasis. How did you get your diagnosis? I

> have exactly the same problem as you and believe me I understand how

> miserable you are feeling. I have had a sore, swollen, burning itching

> vagina for three years non-stop now. My doctor doesn't believe in

> candidiasis and I've had swabs which show no traces of thrush so I think

> she thinks it's psychosomatic! But I think it's in the tissues. My

> doctor won't even order a cell test because she doesn't believe it's

> possible to have cancida/thrush in this way. I've got an appt to see a

> gynecologist but don't hold out much hope. All you people in the States

> seem to have access to much more enlightened medical practitioners than

> we do here in Britain. I too took Diflucan 150mg a day for 14 days with

> no result. I have tried douching with live yoghurt, iodine solution, tea

> tree oil, vinegar. I have been taking nystatin powder orally for a year

> and a half. I am on a strict anti-candida diet (although I confess to a

> lapse every six months or so which definitely sets everything back and I

> know I have to find the will power not to lapse at any time for any

> reason). I have tried nystatin cream and nystatin pessaries as well.

> NOTHING will restore my vagina to normal. I'm 30 now and I just can't

> bear the idea of never being able to enjoy having sex again for the rest

> of my life. I have a lovely and understanding partner but I would like

> to feel like a sexual whole person again. This thing affects your self

> esteem and is so depressing. I live in the U.K so find it hard to get

> hold of some of the products other people on this list are recommending

> - like the Ambrotose. It is also a question of money. I am a student and

> it seems that to have any hope of relief you have to pay thousands or at

> least hundreds of pounds/ dollars. I have enough trouble paying the

> bills and putting food on te table! Anyway - things which have helped

> (it's all been a question of controlling the thing and getting some

> relief) are sitting in basins of Dead Sea bath salts (seems to reduce

> the swelling), some wierd herbs prescribed by a Chinese herbal medicine

> practitioner (which you have to boil up and then douche with the

> liquid). I know all about treating your sexual partner (mostly I'm too

> sore to have sex anyway) and know I don't have any other condition which

> could be responsible. This stuff is quite personal isn't it - I don't

> think people without this problem understand sometimes just what

> absolute hell it is to live with. Good luck with your search for a cure.

> I'm not going to give up. I just don't know what to do next. Best wishes

> to you and everyone out there wrestling with candida. P.S - any

> suggestions?

> .

>

> > _

>

> Subscription URL: /subscribe.cgi/candidiasis

>

>

> Send blank message to this e-mail address if you want to:

>

> TO UNSUBSCRIBE !!!!!!!!! :

>

> candidiasis-unsubscribeonelist

>

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> candidiasis-digestonelist

>

> To change status from digest to normal:

> candidiasis-normalonelist

>

> To subscribe:

> candidiasis-subscribeonelist

>

>

[Guest guest]

Edith,

I think the diet depends on the individual. Shortly after taking the olive

leaf I was able to eat all sorts of things that were taboo before. I think

perhaps I overdid it at first as the candida could still be around. As I

understand it the extract kills the microbes as it comes in contact with

them and is used up.It also does not discriminate between the microbes, and

just kills them all. This is why it can take longer with each individual

befroe seeing the desired results. If you are more toxic than the next

person you may not have the same results. I have seen many improvements in

my health that were not candida related. I also had HSV 1 & 2 and that has

cleared up as well. Not to mention my chronic Athlete's Foot problem which

is gone. I do know one thing, there is a patent that East Park has that

makes their product much more effective than other olive leaf extracts. I

hope you receive the East Park product shortly, I am sure you will find it

will help. Keep in touch.

Re: my diagnosis

> From: Es9525@...

>

> In a message dated 11/10/99 10:02:58 AM Central Standard Time,

> healthynut@... writes:

>

> << The one product that I know about is from East Park Research Inc. You

> should

> be able to find a distributor in England for this. I get mine from

> www.otrecure.com They have a link at their site to the manufacturer's

web

> site.

>

> Hope this helps,

> >>

>

> ,

>

> I've ordered this from another place but haven't received it yet. Have

tried

> another

>

> brand but did not see any thing positive. Did you stay on the very

> restrictive diet?

>

> Edith

>

> > _

>

> Subscription URL: /subscribe.cgi/candidiasis

>

>

> Send blank message to this e-mail address if you want to:

>

> TO UNSUBSCRIBE !!!!!!!!! :

>

> candidiasis-unsubscribeonelist

>

> To change status from normal to digest:

> candidiasis-digestonelist

>

> To change status from digest to normal:

> candidiasis-normalonelist

>

> To subscribe:

> candidiasis-subscribeonelist

>

>

[Guest guest]

Dear :

There are a lot of determining factors in all of these autoimmune illnesses.

He must have reason for suspecting PBC. It could be a combination of both.

My biopsies showed that the there were problems with the bile ducts, yet PBC

was never even considered as a diagnosis for me. It depends of the

interpretation of all of the info and the opinions of all the doctors

involved. The fact that he is 'hobnobbing with is fellow wizards' about it

tells me that he is considering their opinions as well. Be patient that they

will come up with the right diagnosis for you and will get you on the proper

treatment soon.

Also, the information on the Internet tends to deal with the textbook

definitions and not with the varying possibilities that all patients bring.

Just because you don't match the textbook profile for PBC doesn't mean that

you don't have it. I don't match the textbook profile for AIH either, yet I

have it. It did take me longer to get diagnosed because of that, though.

Hang in there!

Take care!

Kathy (AIH)

Seattle area

[Guest guest]

Kathy,

Thanks, I will do that! I'm also thrilled that the whole team will be in on

the diagnosis!

Hugs,

[Guest guest]

,

My original diagnosis was also PBC. I have no idea why that conclusion was

reached but it was revised to AIH as soon as a Hepatologist looked at the

actual biopsy. I've gotten the impression that all of the autoimmune liver

diseases are difficult to diagnose at best and then there's always the

possibility of having multiple conditions. I can see why you feel like

you're in the twilight zone, but at least now you have someone who is

actually taking a look at things.

I've also always wondered if my diagnosis was correct. I have no idea how

they concluded it's AIH, not PBC. Too technical for my limited knowledge

to speculate on. I just learned that our insurance company no longer

covers Green Hospital at Scripps in La Jolla as one of it's Institutes of

Quality. Not for medical reasons but some kind of administrative

problem. Today they gave me a list of some of my other options and they're

great. They include Mayo Clinic (but not the satellite office in Arizona,

as I'd hoped), Baylor and Cedars-Sinai in Los Angeles. The IQ (Institutes

of Quality) coverage pays 100% of all medical bills without a deductible or

co-payment and it also pays our travel expenses, including hotels and meals

and even parking. For that reason, I'd be a fool to go to anything but an

IQ facility. After the holidays I'm going to try to set up an appointment

with Cedars for re-evaluation of my status for transplant. Hopefully I

won't have to have all of the tests all over again though I wouldn't be

surprised if they want to do another liver biopsy. Not happy about that

possibility. The insurance company told me that Cedars is a real " deluxe "

facility and also has top-notch doctors. I'd want to double check that for

my own satisfaction. I've got to say that for an insurance company that

nit picks on the nickels and dimes, they pull out all the stops when it

comes to IQ.

Just hang in there, , though I know that you need to start at least

taking some meds soon, and you're not feeling well. I'd like to be a fly

on the wall when your doctors who were treating you before you went to

Miami learn that they were totally off base. Those idiots. Now don't let

yourself become too anxious. Better they take their time to reach an

educated conclusion than run off on a tangent based on incomplete

information.

Take care,

Geri

[Guest guest]

In a message dated 11/16/1999 6:22:36 PM Eastern Standard Time,

spangs@... writes:

<< Better they take their time to reach an

educated conclusion than run off on a tangent based on incomplete

information. >>

Geri,

Boy I sure agree with that! It's hard to keep a leash on my impatience, but

I'm sure trying! I would much rather have them be sure.

I am so happy to hear about you getting to go to Mayo or Cedars! I don't

know much about Cedars liver dept. but I'm sure someone here does. Maybe you

could ask the ALF which one they recommend? This is great news, I've wanted

you to have a second opinion. Ya know, we have all bonded so much that when

something good happens to one of you, I feel like it happened to me...

Hugs,

(whatever)

[Guest guest]

Geri,

I am confused. No transplant, but anti-rejection drugs. Or did I get

something missed up?

J

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] My diagnosis

>Date: Wed, 17 Nov 1999 14:00:25 -0800

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>,

>It will be interesting to get a new perspective on whatever I have. In a

>way, it's kind of exciting. Of course, I'll bring all of my records from

>the past two years and they'll influence whatever conclusions are reached

>at a new medical facility.

>

>Over and over for the past two years (2nd. anniversary of my

>hospitalization and diagnosis is today!) I've talked myself into thinking

>that all that happened was a one-time " incident " and that if treated that

>one time then left alone, I would now be back to normal. I've blamed

>everything on the medications, argued and rationalized with myself, and it

>all comes back to inescapable facts. They did find cirrhosis and it even

>seems to show up as recently as last month on diagnostic x-rays, though I

>didn't know cirrhosis could show on an x-ray. (Maybe I'm thinking of

>ultrasounds or CT scans since I've had all three of them in the past couple

>of months).

>

>The question is, what is it? And, just how serious is it really? Another

>opinion is going to be very interesting.

>

>I don't think I'll go to Mayo. It's too far and we can drive to and from

>Los Angeles in a long day if we have to. I did get a private e-mail from

>someone who doesn't post here but who has been treated at Cedars. I hope

>to learn more from her (or him? Chris?)

>Take care,

>Geri

>

>

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

>Please support the American Liver Foundation!

>

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[Guest guest]

Dear J:

What Geri is referring to is the fact that a lot of the drugs that are used

for AIH are also used for anti-rejection after transplant. Imuran, 6MP are

sometimes used, but especially Cyclosporin and Prograf. Cyclosporine is used

by some people with AIH, but Prograf hasn't been approved for pre-tranplant

treatment yet. There is another drug related to Cyclosporine called

Tachralemus (sp). Many of these drugs, including prednisone are often

included in the chemotherapy 'cocktails' for several cancers, too.

Kathy (AIH)

Seattle area

[Guest guest]

Yes, Geri, it does make sense. Thank you.

J

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] My diagnosis

>Date: Wed, 17 Nov 1999 16:40:51 -0800

>MIME-Version: 1.0

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>,

>When you have an autoimmune disease, your body is no longer recognizing an

>organ or some body component as belonging to itself. Autoimmune means,

>literally, " against self " .

>

>When we have an infection, for example, a healthy immune system will fight

>the infection and try to destroy it. In AIH, our immune system believes

>that our livers are foreign, or " infections " , and begins to aggressively

>try to destroy them. This, of course, results in organ rejection unless

>the immune system is disabled.

>

>Thus, Imuran, Prednisone and other drugs that suppress the immune system

>result in (hopefully) stopping the rejection. So, even if those of us with

>autoimmune liver diseases haven't had transplants, our bodies are still

>trying to reject our livers. Transplants hopefully will halt this

>process. However, the problem isn't really a diseased liver, it's a faulty

>immune system. Which is why some people who've had transplants develop AIH

>again.

>

>The plus side is that with a transplant, we have a new start with a healthy

>liver and our doctors know about the possibility that our immune systems

>will try to reject the new livers. Thus, they can hopefully stop the

>rejection before too much harm is done - and better yet, before ANY harm is

>done. Also, people with autoimmune diseases probably had them for years

>before they were recognized and diagnosed, so it's reassuring to bear in

>mind that nothing extreme is apt to happen overnight.

>

>Incidentally, one of the reasons that some people have more than one

>autoimmune disease (Lupus, PBC, PSC, diabetes, RA, etc.) is because the

>problem is in the immune system, not in the organs, etc.

>

>Hope this makes some sense.

>

>Take care,

>Geri

>

>

>

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

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><< text3.html >>

[Guest guest]

,

It will be interesting to get a new perspective on whatever I have. In a

way, it's kind of exciting. Of course, I'll bring all of my records from

the past two years and they'll influence whatever conclusions are reached

at a new medical facility.

Over and over for the past two years (2nd. anniversary of my

hospitalization and diagnosis is today!) I've talked myself into thinking

that all that happened was a one-time " incident " and that if treated that

one time then left alone, I would now be back to normal. I've blamed

everything on the medications, argued and rationalized with myself, and it

all comes back to inescapable facts. They did find cirrhosis and it even

seems to show up as recently as last month on diagnostic x-rays, though I

didn't know cirrhosis could show on an x-ray. (Maybe I'm thinking of

ultrasounds or CT scans since I've had all three of them in the past couple

of months).

The question is, what is it? And, just how serious is it really? Another

opinion is going to be very interesting.

I don't think I'll go to Mayo. It's too far and we can drive to and from

Los Angeles in a long day if we have to. I did get a private e-mail from

someone who doesn't post here but who has been treated at Cedars. I hope

to learn more from her (or him? Chris?)

Take care,

Geri

[Guest guest]

,

When you have an autoimmune disease, your body is no longer recognizing an

organ or some body component as belonging to itself. Autoimmune means,

literally, " against self " .

When we have an infection, for example, a healthy immune system will fight

the infection and try to destroy it. In AIH, our immune system believes

that our livers are foreign, or " infections " , and begins to aggressively

try to destroy them. This, of course, results in organ rejection unless

the immune system is disabled.

Thus, Imuran, Prednisone and other drugs that suppress the immune system

result in (hopefully) stopping the rejection. So, even if those of us with

autoimmune liver diseases haven't had transplants, our bodies are still

trying to reject our livers. Transplants hopefully will halt this

process. However, the problem isn't really a diseased liver, it's a faulty

immune system. Which is why some people who've had transplants develop AIH

again.

The plus side is that with a transplant, we have a new start with a healthy

liver and our doctors know about the possibility that our immune systems

will try to reject the new livers. Thus, they can hopefully stop the

rejection before too much harm is done - and better yet, before ANY harm is

done. Also, people with autoimmune diseases probably had them for years

before they were recognized and diagnosed, so it's reassuring to bear in

mind that nothing extreme is apt to happen overnight.

Incidentally, one of the reasons that some people have more than one

autoimmune disease (Lupus, PBC, PSC, diabetes, RA, etc.) is because the

problem is in the immune system, not in the organs, etc.

Hope this makes some sense.

Take care,

Geri

[Guest guest]

Kathy,

My doctors have always referred to Prednisone and Imuran as anti-organ

rejection drugs! Which makes sense, since my immune system is trying to

reject my liver, just as my son's immune system destroyed his nervous

system, resulting in paralysis and ultimately death (from ALS). However,

neither Prednisone nor Imuran would have been effective for him and I have

no idea why, Since he took experimental drugs (through the Muscular

Dystrophy Association) I would think they considered them but determined

they were not the right drugs for that particular autoimmune condition.

Take care,

Geri

[Guest guest]

,

When you have an autoimmune disease, your body is no longer recognizing an

organ or some body component as belonging to itself. Autoimmune means,

literally, " against self " .

When we have an infection, for example, a healthy immune system will fight

the infection and try to destroy it. In AIH, our immune system believes

that our livers are foreign, or " infections " , and begins to aggressively

try to destroy them. This, of course, results in organ rejection unless

the immune system is disabled.

Thus, Imuran, Prednisone and other drugs that suppress the immune system

result in (hopefully) stopping the rejection. So, even if those of us with

autoimmune liver diseases haven't had transplants, our bodies are still

trying to reject our livers. Transplants hopefully will halt this

process. However, the problem isn't really a diseased liver, it's a faulty

immune system. Which is why some people who've had transplants develop AIH

again.

The plus side is that with a transplant, we have a new start with a healthy

liver and our doctors know about the possibility that our immune systems

will try to reject the new livers. Thus, they can hopefully stop the

rejection before too much harm is done - and better yet, before ANY harm is

done. Also, people with autoimmune diseases probably had them for years

before they were recognized and diagnosed, so it's reassuring to bear in

mind that nothing extreme is apt to happen overnight.

Incidentally, one of the reasons that some people have more than one

autoimmune disease (Lupus, PBC, PSC, diabetes, RA, etc.) is because the

problem is in the immune system, not in the organs, etc.

Hope this makes some sense.

Take care,

Geri

[Guest guest]

I so understand your frustration with doctors. I

feel the very same. My doctor has refused to give me a

referral to see an endocrinologist because she feels she

is handling my case just fine. I mean she outright

refused, I was so shocked. She doesn't take into account

that it's been a year this month that my levels have

not reached " normal " limits. Every six weeks my

medicine has been adjusted. Now I don't even see her

anymore, I just come in, pay my $10, get my blood drawn

and then the nurse calls me with my results and tells

me what Dr. Noble wants to do. I know I need to find

a new doctor but I just haven't taken the

time.<br><br>I am a stay at home mom of 3 children so I need my

health and energy and I haven't felt good is so long. I

never had any trouble conceiving. I even conceived my

last child while my levels were wrong and I wasn't

having a normal period, go figure.<br><br>Anyway, maybe

I will switch doctors and quit fooling around with

this.<br><br><br>Tyra

[Guest guest]

Wow!! I can't believe how similar your story is

to mine--Went to a new gynecologist and while going

over old records she found where the last gynecologist

had diagnosed low thyroid in 1997 and NEVER said a

word to me!! I really know what you mean about

frustration with doctors--but thank goodness I have found a

couple of good ones recently that have helped me out a

great deal!<br>Hope that you can find the

same!!<br><br>Becky

[Guest guest]

Becky, Do you live in MD too? lol....only

kidding. Sounds like we had the same doctors, and my new

GYN is a she also. What I DON'T like is that she

recently put me on the Pill to shrink the cyst that I

have. I understand that it is the routine way of trying

to make it go away, but I still don't like taking

it. The bright side to that is I'll only take it for

3 months. Then I'll get another sonogram to see

what is going on. <br><br>After lots of reading....I

find they are not unusual to hypothyroid women. So I

really want to be treated as a WHOLE....not the for

little bits of this and that. I really think for most of

it much of our symptoms are all tied together to a

root cause. THAT is what I want my doctor to do, help

find the CAUSE and quite treating everything

individually. <br><br>I take Daypro for carpal tunnel. <br>I

take the Pill for ovarian cysts.<br>I take Bentyl for

IBS.<br>I take Synthyroid for the thyroid.<br>I take

Claritin for allergies.<br><br>All that and I still feel

crappy most of the time!! I could sleep

forever!<br><br>Thank goodness I don't take anything for my MOOD

lol...but that might not be a bad idea!!<br><br>Thanks for

listening!

[Guest guest]

Tyra,<br><br>I am also a stay at home mother and

I know that it is very difficult to find the time

to get things done (especially when it is for

yourself!), but I strongly urge you to change doctors!!! You

do not deserve to be treated that way and since you

have a disease that will affect you the rest of your

life, you should have confidence in your doctor's

ability to treat the disease.<br><br>