info

February 12, 2007

I have friends in Hamburg... (neighborhood of Harburg)

~guin

info

Duff or Turk

Do we have anyone in Germany on the list.. I need to find a brother of a lady, who died. Thought they may help me notify him.

Jim

Bored stiff? Loosen up...Download and play hundreds of games for free on Games.

February 26, 2007

they're likely doing the same inf/riba stuff that's done here... do you mean

something original they've come up with to try? let us know if you find

anything!

> info

>

> i have heard that there is a treatment offered in italy for hep

> c. i have searched the web for weeks and have not come up w/

> anything. i am hoping that someone in the chat room might know

> something...

>

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

> Never miss an email again!

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>

April 11, 2007

>

> Hi;, New to the group. Read most of what is going on during the last

three days.

> Need links to read experiences of others with MS and LDN .

>

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

> Sucker-punch spam with award-winning protection.

> Try the free Beta.

>

HI NEW TO GROUP TOO JUST STARTED LDN 4 DAYS AGO I'LL POST NEWS WHEN I

HAVE TO REPORT. I HAVE MS TOO LET ME KNOW HOW OTHERS DO THANKS.

April 11, 2007

Hi Walter,

Casehealth.com.au is an online database of health success stories

searchable by condition, symptom, or treatment. A search for LDN will

reveal all LDN related success stories.

Five MS/LDN health success stories (from the online database) were

collated into a booklet last year as my donation to SammyJo's LDN

fundraiser.

The booklet is in MS Word 2000 format so you'll need MS Word 2000 (or

later version) to be able to open, read, and print.

The booklet is free and available upon request - but if you'd like

one emailed please contact me directly (casehealth@...)

so we don't clog up this forum.

Regards,

Cris

casehealth.com.au

>

> Hi;, New to the group. Read most of what is going on during the

last three days.

> Need links to read experiences of others with MS and LDN .

>

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

> Sucker-punch spam with award-winning protection.

> Try the free Beta.

>

April 12, 2007

Hi Cris: Thanks for the information, appreciate your dilligence. Will go now to the site... T/U WalterCris <casehealth@...> wrote: Hi Walter,Casehealth.com.au is an online database of health success stories searchable by condition, symptom, or treatment. A search for LDN will reveal all LDN related success stories.Five MS/LDN health success stories (from the online database) were collated into a booklet last year

as my donation to SammyJo's LDN fundraiser. The booklet is in MS Word 2000 format so you'll need MS Word 2000 (or later version) to be able to open, read, and print.The booklet is free and available upon request - but if you'd like one emailed please contact me directly (casehealthoptusnet.au) so we don't clog up this forum.Regards,Criscasehealth.com.au>> Hi;, New to the group. Read most of what is going on during the last three days.> Need links to read experiences of others with MS and LDN .> > > > ---------------------------------> Sucker-punch spam with award-winning protection.> Try the free

Beta.>

It's here! Your new message!Get

new email alerts with the free Toolbar.

November 20, 2007

Oh sorry I called you Robin --from the e-mail address

Liz, I highly recommend everyone new to this site to check out the

excellent library files here. It prevents rehashing of the same

information and there is a real wealth of information there. We are

forever in Ken's debt.

I really hope some day we can get a good web site off the ground --

started one but we never finished it.

Lori

>

> I am rarely on this site lately but am always boggled by the

plethora of excellent new information when I check in. Keep talking

folks!! So much easier to research this way than to rely on other

methods (internet, Docs, trial and eror, etc).

> Best to All, especially those who are struggling.

> Liz

>

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

> Be a better pen pal. Text or chat with friends inside .

See how.

>

June 4, 2008

spclady43, welcome to the group. I hope we can help you with questions that

arise.

Neither drinking nor drug use causes autoimmune hepatitis (AIH). You can tell

people that with assurance, if it matters to your situation. It's an

autoimmune disease. Other, better-known autoimmune diseases include lupus and

rheumatoid arthritis; there are many, many other ADs.

No, there isn't a " cure " for AIH, but treatment for it can be very effective.

One study shows that people who respond to conventional therapy have normal

lifespans.

I haven't heard of blisters with AIH. However, there is another AD, called

dermatitis herpetiform (DH), that causes blisters. A doctor can test the

blisters to see if you have DH, and treatment for it probably will be very

effective. Many people with one AD have another, so it's possible that you have

both

AIH and DH.

Many of us get very itchy, usually before we're diagnosed and begin

treatment, but that itch doesn't cause blisters.

Are you seeing a good doctor? How were you diagnosed? What treatment are

you using?

I'm glad you were able to find our group. Let us hear from you.

Best wishes.

Harper

In a message dated 6/4/08 10:11:47 AM, spclady43@... writes:

>

> I was wanting to know if anyone with Autoimmune Liver Disease Has

> blisters that come up on them?I know that this painful and I guess

> there is no cure for people who have this disease.I have never drake or

> done drugs and I still got this.I wish I knew more.

>

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

Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

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June 4, 2008

spclady43, I forgot to say that it's really important that you talk to your

doctor about these blisters, if you haven't yet. Do it right away.

Because our livers aren't healthy, we are more susceptible to other

illnesses. One of the medications you may have been prescribed by now can make

infections more serious. Also, you could be having an allergic reaction to some

medication. A broken blister could lead to infection, which you can't afford

to

have right now. Be sure to ask about dermatitis herpetiformis (DH), which I

mentioned in my previous post.

If you haven't called your doctor yet, pick up the phone and do it now.

Best wishes.

Harper

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

Get trade secrets for amazing burgers. Watch " Cooking

with Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & amp;NCID=aolfod00030000000002)

June 4, 2008

spclady43, one other thing: You said you wished you knew more. There's a

book that I found helpful when I was first diagnosed. It's Dr. Palmer's

" Guide to Liver Disease " . It's a very sensible, basic book to give you some

background, some guidelines, for your new situation. You can buy it for under

$20 at her website, liverdisease.com, or on Amazon, if you don't find it in

your local bookstore or library. I think the most recent edition was published

in 2002.

I'm very glad to have found this book, which was recommended to me by people

at this site when I was diagnosed in 2000. I was extremely ill then. Now,

eight years later, I'm still here and I'm doing fine, enjoying every day.

Harper

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

Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & amp;

NCID=aolfod00030000000002)

June 4, 2008

spclady43, I wish we knew more about your situation so that we could give you

better help. While this is a very serious disorder, it is extremely

treatable. With proper therapy, we have an excellent chance of living long,

productive, satisfying lives. (Without treatment, the prospect isn't very good.

at

all.)

Is your doctor easy to talk with? Do you have symptoms (other than the

blisters) that are bothering you? Do you have someone to go with you to

appointments, at least occasionally?

I found that it helped a lot to make a computerized list of things I wanted

to ask my doctor, before the appointment. I'd use large font, to make it easy

to read quickly, and I'd leave space to write in the answers I got. I'd leave a

blank so I could check each question off after I asked it. The doctor I

have now likes to have a copy of the questions to read at the beginning of the

appointment, and she puts them in my file. I'm careful (now) to head these

sheets with the date and the doctor's name.

Also, before each appointment list every medication, whether prescription or

over-the-counter (OTC), that you're taking. This list should include

everything taken by mouth -- aspirin, herbal teas (to be avoided, generally

speaking),

everything. Also, any rubs you use that could penetrate the skin.

Save all these lists in your computer or in a separate file. You'll find them

useful or at least interesting to go back to later.

At first, you may have blood tests as often as three times a week. The tests

will become much less frequent as your health improves and you medication

dosages decrease.

Ask for test results. At my previous HMO, the lab results sometimes beat me

home, waiting in my computer the same day. At my current health group, I have

to ask my doctor for each test; it's the lab's policy. At any rate, you're

entitled to see all lab test results, and it's a very good idea to get them and

to file them away. If you don't feel able to make a proper file right now, put

them in a box where you can get to them and file them later.

You may need to be pretty aggressive, as you'll need to ask a lot of

questions along the way -- not all doctors are good about volunteering

information.

The problem is that you may not feel well enough to do so at first. Having

someone with you at some or all medical appointments can be a big help.

You probably should have a bone density scan now, as a baseline comparison

for the future. You almost certainly will be taking Prednisone, which is hard on

the bones. You'll need to take calcium with vitamin D. My doctors strongly

recommend that this be in the form of calcium citrate with D. You should ask

about taking something like Fosamax as well, to keep your bones strong.

This WILL get easier. When your medication kicks in, you'll feel much

better, and much more capable of handling appointments, lab tests, medication

schedules, etc. In the meantime, get all the help you can scrape up. Don't be

embarrassed to ask for help. Later, you'll feel better; then you'll have an

opportunity to help that person or someone else just as much.

Harper

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

Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & amp;

NCID=aolfod00030000000002)

June 4, 2008

Have you talked with your doctor about dermatitis herpetiformis as a

possibility? It's another AD. It's diagnosable by a lab test, and it's treated

by

avoiding contact with gluten and/or using a certain medication.

Harper

In a message dated 6/4/08 2:00:14 PM, dunsterl@... writes:

>

> I also get blisters mainly on my hands and they are very itchy and I tend to

> scratch till they pop, very naughty. Sound familiar? I find that they come

> and go and are usualy worse when stress is an issue. Not a lot that can be

> done about them except keeping stress free. I did find that once my meds

kicked

> in and my numbers came down the frequency of the blisters was a lot less.

> Hope this helps.

>

> Lindy

>

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

Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & amp;

NCID=aolfod00030000000002)

June 4, 2008

I also get blisters mainly on my hands and they are very itchy and I tend to

scratch till they pop, very naughty. Sound familiar? I find that they come and

go and are usualy worse when stress is an issue. Not a lot that can be done

about them except keeping stress free. I did find that once my meds kicked in

and my numbers came down the frequency of the blisters was a lot less. Hope

this helps.

Lindy

---- spclady43 <spclady43@...> wrote:

> I was wanting to know if anyone with Autoimmune Liver Disease Has

> blisters that come up on them?I know that this painful and I guess

> there is no cure for people who have this disease.I have never drake or

> done drugs and I still got this.I wish I knew more.

>

June 5, 2008

Dear Harper

I was told in Uk hospital about 2 months ago.When they took me there they did

not know what was wrong with me.They just knew I was really sick and they didnt

think I was goingo make it.But Im here thanks to the good lord above,My dr has

seen the blisters and he sad it is apart of this diease.My skin is also turning

a bronze color.Yes I itch alot.The only meds Im on is water pills,phenergain to

keep me from being so sick to my stomach and demral for pain.

I just moved to Ky 1 tear ago.Before I lived in Ohio and they said at the

hospital I have had liver problems fo 2 years.I told my family dr in ohio tht I

was sick but didnt know why.I ask him to do blood work several times and he said

there was no need to.So they are telling me if he would have done blood work he

would have found thia along time ago and I wouldnt have gotten as bad as I

did,Im doing better but I can have bad days.I really enjoyed talking to everyone

yesterday.

I dont know what chat room you was in but I would like to talk to you

again.You all seem good to me.I love life and I have 3 kids and 14 grandkids so

I want to be around along time.And I dont really under stand what cirrhosis is.I

take one day at a time and Im not going to let this beat me.I might be gone tomm

but I can say I am happy and I have alot of people who love me and stand behine

me.Thank you so much much for taking the time to write to me.Hope to talk to you

again soon your friend Daphne

flatcat9@... wrote:

spclady43, welcome to the group. I hope we can help you with questions

that

arise.

Neither drinking nor drug use causes autoimmune hepatitis (AIH). You can tell

people that with assurance, if it matters to your situation. It's an

autoimmune disease. Other, better-known autoimmune diseases include lupus and

rheumatoid arthritis; there are many, many other ADs.

No, there isn't a " cure " for AIH, but treatment for it can be very effective.

One study shows that people who respond to conventional therapy have normal

lifespans.

I haven't heard of blisters with AIH. However, there is another AD, called

dermatitis herpetiform (DH), that causes blisters. A doctor can test the

blisters to see if you have DH, and treatment for it probably will be very

effective. Many people with one AD have another, so it's possible that you have

both

AIH and DH.

Many of us get very itchy, usually before we're diagnosed and begin

treatment, but that itch doesn't cause blisters.

Are you seeing a good doctor? How were you diagnosed? What treatment are

you using?

I'm glad you were able to find our group. Let us hear from you.

Best wishes.

Harper

In a message dated 6/4/08 10:11:47 AM, spclady43@... writes:

>

> I was wanting to know if anyone with Autoimmune Liver Disease Has

> blisters that come up on them?I know that this painful and I guess

> there is no cure for people who have this disease.I have never drake or

> done drugs and I still got this.I wish I knew more.

>

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

Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & amp;

NCID=aolfod00030000000002)

June 6, 2008

I don't have the screen name available, but for the person who's having

jaundice and blisters, I have a question.

Have you and your doctor discussed transplant options? It's always good to

know where you stand in terms of a transplant. Eight years ago, a friend

with AIH was mis-diagnosed and therefore she didn't receive standard treatment

(usually prednisone and something like azathioprine) until she was so ill she no

longer could recognize her children. She was able to get a liver transplant,

and now she's leading a healthy, productive life, enjoying herself and her

family and her work.

Harper

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

Get trade secrets for amazing burgers. Watch " Cooking

with Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & amp;NCID=aolfod00030000000002)

June 6, 2008

Hi,

Daphne Hair kirjoitti 5.6.2008 19:37:

> The only meds Im on is water pills,phenergain to keep me

> from being so sick to my stomach and demral for pain.

I haven't been active on the list for a while, but your

message made me write again, as I'm wondering if they've

given any reason why the AIH treatment hasn't been started

yet? I mean, usually we take something like prednisone

and/or an immunosuppressive such as Azamun.

Like Harper said, the itching and your skin turning

bronze/yellow are typical signs of liver disease and not

necessarily related to the blisters.

A little update on my situation: my labs continue to be

fine, both liver and other tests are normal, and are now

checked only every three months, unless something unexpected

turns up. I'm still on 200 mg of Azamun per day, and shall

be for the rest of my life, I'm told. Apparently with the

type of AIH that I have (the kind which hits out of the blue

and hard) it's not worth the risk to try and get me off the

stuff, since a relapse would probably be even worse than

what it was the first time round. They said only about a

fourth of those who try to leave all medication can actually

stay off them indefinitely, so they dont want to risk it.

Still, I don't mind; if four little pills per day is enough

to keep me well (fingers crossed), that's fine by me! :-)

Wishing everyone a wonderful, healthy summer,

Jaana

Helsinki, Finland

where it's been a bit too hot for my taste - nearly 30

degrees Celsius (80+ F) today

June 9, 2008

Daphene, there is a disease called Dermatitis Herpitiformus (DH)....which is a

reaction to gluten. It causes little itchy, watery blisters which, when they

pop, they hurt. I had most of mine on my knees and elbows, but later developed

around my scalp, then they just came wherever they felt like it....on my hands

or knuckels....It is not very common, but if one has an intolerance to gluten

(wheat, oats, barley, or rye) it can be pretty annoying. I had it for 21 years

before being dx with AIH. There is medication for the treatment of it, but

after I went gluten free, I have not had any problems and stopped the medication

withing a few months. One less pill to take!

One year before being dx with AIH, I was dx with Celiac Sprue. Actually, I was

the one who found out I had Celiac and told my dermatologist who had been

treating me for the DH realized I had CD too, and sent me to a GI who did the

blood work. The one problem was.....at that time, I was VERY overweight and the

doctor ACTUALLY laughed at me saying I could not have CD because I was too fat.

Well.....he was shocked when the labs came back positive! So, he " conceded "

that perhaps if I wanted to have the endoscopy, he would " do " it, but he still

didn't think I had CD.

I had to scope, and woke up during the procedure. I started to fight the tube,

and the nurse hauled off and hit me 3 times telling me to be still. The doctor

refused to give me any more sedation because my oxygen level was too low.

(Later, I was told, when you hyperventilate, the O2 level goes down...). The

doctor was frustrated, but managed to get 5 samples, and told me that he wanted

8 and was sure none of the samples would be positive. The whole thing was a

total nightmare!

Well, ALL of the samples came back positive. I taught this doctor a lesson

because he thought that since I was fat, I could NOT have CD. I found a

wonderful doctor who truly does understand all aspects of CD...one of which is

that when the body is deprived of food, one eats to try to make up the

difference. That causes one to gain weight.

ANwyay, you really might want to ask the doctor to do a biopsy on the blisters

and see if it is realated to gluten....Celiac and DH are autoimmune diseases,

and often go along with AIH.

Debby

Re: [ ] info