To

[Guest guest]

I am from NC also - where in NCH is your cousin from? - I go to duke university and they seem to be very on top of things there paula aih 4/00

[ ] re: to

Hi I as well am new to the group. My cousin who is basicly like my little brother was just diagnosed and I am trying to find out every little bit of info I can. I do hae a quick question for you : He is on 40 mg of pred. and has been for two weeks now. What were you started out on. Will, my cousin, lies in NC and the doctors here have not seen a case of this personally. So I am a little weary of their knowledge. Thanks, Celia

[Guest guest]

hi there - I just read your post and I am from NC also - I am being treated

at duke - I live in Kinston - paula aih 4/00

P.S. - maybe we can meet sometime

[ ] Re: to

> Hi Celia,

>

> Sounds as if Will is lucky to have a cousin like you! Welcome to the

> group. This is one of the best places to get information on

> Autoimmune Hepatitis, links to other sites, other sources, as well as

> from our own experiences. One of the best introductions to AIH can be

> found in a book by Palmer, " Hepatitis & Liver Disease " ; you

> can purchase that online @ Amazon.

>

> How old is Will? There are people of all ages who post here (or

> whose family members post) so I know if there are concerns or

> questions that might be more age related, someone here will be

> able to help. Where in NC does he live? I live in Greensboro, and

> there are other folks here from NC as well.

>

> I am in my 40's and was diagnosed about 9 mos ago. I was started on

> 60 mg prednisone, and after some ups and downs, am down to 5 mg, along

> with taking another medication. I am feeling much better than I was

> last fall, but still have some not so good days.

>

> I am being treated by a gastroenterologist who has some experience

> with AIH. I was lucky that the family doctor I saw knew about it and

> got me referred to this specialist. I have found that in having to

> seek treatment for other things that other medical people know very

> little about this disease, probably because it is uncommon.

>

> As you learn more about this, you will have more and more

> questions...so just ask away....

>

> Wishing you and Will the best

>

> nne

>

>

> > Hi I as well am new to the group. My cousin who is basicly like my

> little

> > brother was just diagnosed and I am trying to find out every little

> bit of

> > info I can. I do hae a quick question for you :

> > He is on 40 mg of pred. and has been for two weeks now. What were

> you started

> > out on. Will, my cousin, lies in NC and the doctors here have not

> seen a case

> > of this personally. So I am a little weary of their knowledge.

> > Thanks, Celia

>

>

>

>

[Guest guest]

,

You're absolutely right. I apologize. I saw the word " It " not " I. "

Sorry for the confusion.

~

> ,

>

> I said I was harsh, not you. d:-)

>

>

>

>

>

> > > > > In a message dated 8/23/01 11:50:30 AM Eastern

> > > > > Daylight Time,

> > > > > vkyama@y... writes:

> > > > >

> > > > >

> > > > > > Try " The Cure For All Diseases " by Dr. Hulda

> > > >

> > > > >

> > > > > Wow...that's an expensive book. I looked on

> > > > half.com

> > > > > and it isn't cheap, even

> > > > > there!

> > > > > I'll have to put it on my wish list and get it

> > > > > eventually.

> > > > > Thanks for recommending it.

> > > > > ~

>

[Guest guest]

Thanks ...

I think I MIGHT be doing the period thing too! I'm going to watch and see!

BIG HUGS

in ARk

[Guest guest]

In a message dated 9/5/01 9:51:43 AM Pacific Daylight Time,

writes:

> How far away is clinton from Raleigh, I'd be delighted to

> come on over with some food, etc., and hang out. Really, it would be my

> pleasure.

You are a Gem and I cannot wait to meet you.

Joni

>

>

[Guest guest]

Hi : It was real good to hear from you the other night and I was so

happy you were feeling better. I hope that is still the case today. I know

everyone is happy to hear from you since it has been a while.

Tell Danny I'm very glad about his cast coming off and tell a, way to go.

Also tell her I enjoyed the flute performance she gave me. As I told you I

played flute in High School but I forgot to tell you so did my mother.

Well, Hon I better go get some work done before its noon. I have enjoyed

being off for four days but it has gone by to fast.

Take care and God bless you and your family

GOD BLESS AMERICA

Love, Genny

[Guest guest]

,

Not to worry, It'll take more than that ole Vellucci girl to run me

off--Bisexual or not!!

Ha-ha

Chip

Re: Chip

> Be careful Ladies, we scared Steve offline. I would hate to lose another

> male MGB. I miss the humor, so lets keep him. Overman

> 2/5/01 245/143/135?

>

>

>

[Guest guest]

Hi Techie,

The white count increases in a bacterial infection and goes down in a viral infection. And a sore throat can have a viral origin.

[Guest guest]

Thank you, Techie

It all turned out ok in the end. My blood counts were all ok. It took a

week to get the results so it was just as well that they were...

The trouble is dealing with doctors who don't know enough. I was mostly

worried about being taken off the carbimazole unnecessarily. Anyway, that

didn't happen so that's fine.

Happy New Year!

to

> Hi, before my endo put me on ATD, she told me that if ever I get a

> sore throat, go right to the emergency and get a white blood count

> done. If you just ignore this you can become sicker because of the

> infection. Because when you are on atd and an infection occurs, they

> are worried that it is because of a side effect of the atd. If it is

> just a regular sore throat though then your blood count shouldn't be

> critically low so you should still be ok taking the atd. Elaine,

> doesn't the white blood cells normally go up when you have an

> infection? That's why if the counts are low then they would

> attribute that as a side effect of the atd.

>

>

> Hope you feel better . I know it is the holidays but you gotta

> take care of yourself first.

>

> Techie

>

>

>

>

>

>

>

[Guest guest]

Dear Georgina,

Thanks for the reply. Still not sure what's going on with her. She sees

rheaumy this Friday so hopefully will find out something then. I too

wondered if it was some kind of circulatory problem as she does have the

necrosis problem and it's my understanding that it can happen anywhere.

(She's been eating breakfast with her gloves on again---seems to hit

more in the morning) She also has a new complaint--the muscle in her

lower right leg is now sore and tender. There's no bruise or lump or

knot etc... but when you barely touch this one area she pulls away and

tells you not to because it really hurts. (I really pushed it one day to

check for lumps etc.. and almost got kicked across the room! lol!) I'm

hoping maybe its just a pulled muscle thing--but strange how it's only

one spot--about the size of a silver dollar. If it was her left leg I'd

say it was all this hip stuff as though she has it in both hips her left

one is definetly the worse. But the " right leg " thing is throwing me

off. She's been very tired, cranky and has hardly any endurance. She's

also been complaining of more stomach pain--but the Prilosec seems to

take care of that. She goes to swim therapy tomorrow--which she

loves--so looking forward to a " good " session. She sees OT Thursday

morning (not looking forward to that) Last session it looked like they

were going to rip her head off as they worked on her neck and shoulders

and upper back so much. Sorry to go on--I just feel totally lost right

now. Thanks again to you and the group for listening and " being " there

for us!

and Kate--7 severe poly and AVN

[Guest guest]

Hi ,

Thank you for sharing your story with me. Yes...it is helpfull for me, it makes me understand better a lot of things.... you know...those bugging little ideas that keep creeping back .... it helps me to keep them away.

Thanks again... Take care HUGS from Canada

MKANTZLE@... wrote: ,Diagnosed with AIH in July of 2000. Cirrhosis was not definitely diagnosed until liver biopsy was done in September of 2000. They did not do a liver biopsy right away as my LFT's were 1800 to 2000 and Protime was way out. They though it to dangerous in July and I had a quick response to Prednisone which made them feel very confident that diagnosis was AIH. Platelett count did not start to drop drastically until December of 2000, at that time I was diagnosed with portal hypertention. Esophageal bleed did not happen until December of 2001. My list of meds started on Prednisone not sure if it was 80 or 60 mg's. They then dropped down 20 mg's at a time as LFT's decreased until they maintained me on 20 mg's for about 6 months. Then 10 mg's for 1 month and then they tried 5 mg's 1 day and then 2.5 the next. Quickly my LFT's went up again. They then kept me on 7.5 for 6 months until now they have dropped to 5 daily for 1 month after GI Bleed. They started me on Imuran about 3 months after prednisone and I had a lot of nausea and difficulty taking this. They then switched me to Cellcept 500mg tablets 2 twice a day and I have done well. List of meds now is:Vitamin E 800 I.U. daily, Floic Acid 2 mg's daily, Prednisone 5 mg's daily, Vitamin K 20 mg's 3 times a week. Furosemide 40 mg's daily, Cellcept 500mg's 2 tablets in AM and 2 at night, Spironolactone 25 mg's 2 tablets in AM and Propranalol 20 mg's daily with Generlac 2 tables spoons up to three times a day. I still work a full time job but this is a struggle. I'm a single MOM and don't have a lot of choice. I'm not on the transplant list and hope to stay off. I have had 1 visit with transplant surgeon RE: Spleenectomy which we are holding off on as long as my platelett count stays where it is. (It has improved over the last month). A lot hinges on recurrent bleeds. Hopefully the Beta Blockers will do their job. They want to hold off doing another liver biopsy until they get prednisone stopped or to the lowest dose possible. Hopefully we can stop it and only stay on Cellcept. That's the plan. Enough about me. Hope this is helpful.

[Guest guest]

Hi ...

I truly think that one of the toughest things is waiting to get results...your mind can just run away with all kinds of thoughts...

That is another good thing about this group....everyone knows how hard it is to wait ...and really know what you are going thru...

Thanks for thinking of us...

Luanne Ty's mom

[Guest guest]

....Well, , I am very happy for you. I hope you continue to have a good

treatment experience. I, for one, was glad I had read about the sides with

old combo..it made me know that I wasn't crazy when they began happening to

me. Altho my first couple of weeks were fine, the rest of the 13 months

were not, but I knew if others had been able to perservere, then I might too.

Treatment sides are, unfortunately, a fact of life for many of us. You may

in the minority. Rejoice! We ARE happy for you. Like I said, I hope it

continues throughout, if not, we are here. mzgee

[Guest guest]

....Well, , I am very happy for you. I hope you continue to have a good

treatment experience. I, for one, was glad I had read about the sides with

old combo..it made me know that I wasn't crazy when they began happening to

me. Altho my first couple of weeks were fine, the rest of the 13 months

were not, but I knew if others had been able to perservere, then I might too.

Treatment sides are, unfortunately, a fact of life for many of us. You may

in the minority. Rejoice! We ARE happy for you. Like I said, I hope it

continues throughout, if not, we are here. mzgee

[Guest guest]

,

I would love to know all the details involved in having the TT. Please e-mail

me at jlrudden1@....

Thanks,

Janet

land 12/14/00

[Guest guest]

> I apologize if I sounded hostile. Just questioning for information

to

> understand. I have not had access to the internet for two years. A

lot

> to catch up on and most of it seems to be happening here. I am

sincere

> in my questioning and will have to wait about 1 year and watch and

> listen to the parents posting.

The HNI enzymes have been available for more than a year, so you can

read messages here and see how we all learned about them. You can

also continue to read our information in the future.

My son is age 6, he does not tolerate basically any foods, he is very

highly metal toxic, and he has a genetic dx. Unfortunately I don't

have the luxury to wait around for people to compile statistics from

studies, especially because the medical people don't want to touch him

because he never regressed. I do my research, but I can't wait

forever. It is different for you because you know what works for your

daughter and she is recovered [so far as I know].

> As I posted asking about statistics it does not appear that there is

a

> sincere effort to obtain overall statistics for this product as is

> common for most products.

There is a file section on this site, you can read there the parent

statistics. I don't know about any other efforts to compile

statistics, but I am grateful these products are released when they

are determined safe and effective for many children, without waiting

forever for the " official blessing " . Many people want to know the

official blessing, or the statistics, etc, and that is okay. But I

cannot afford to wait for my son.

> I am bland, questioning and not a very

> social person.

LOL! The people here who know me, can attest that I am exactly this

description also!

>> I am not interested in friends or followers. If I am to

> learn about this product with some new ingredients not usually

> provided in enzyme supplements then I have to ask questions.

I would suggest that you might obtain much more information, of the

type which is relevant to you, if you contact the suppliers directly,

rather than asking parents who are not scientists nor are we the

developers of the products.

Dana

[Guest guest]

kathy,

hi, I live in the Raleigh area and went home the day I was released from

the hospital (the 23rd) It weird, sometimes, now I cant believe how much I am

able to eat at times...I am going to try and not worry, let me know how your

progress is going

[Guest guest]

,

I feel like I missed out on the litter mate thing sometimes. Oh well, nice for

you that you were able to go home. They were all very nice at the hotel and I

was even able to bring my dog. But, there's no place like home!

I know what you mean about eating so much! I feel like I eat all the time. My

desires have changed. I used to eat a lot of breads, now I really don't enjoy

bread. I seldom eat bread. If I go to Subway or anyplace like that, I will

have a salad of some kind. It feels like bread gets inside me and expands.

Feels like a rock in there. Whatever, I'm glad. I used to eat way too much

bread. So it's a good thing now that I don't. I also don't enjoy eggs anymore

either. Once in awhile, I think I want some and I will fix them but I end up

throwing them away. Throwing food away, now that's a first for me! I wish I

didn't enjoy chocolate!

Well, let me know how the not worrying is going. It's usually easier said that

done!

Kathy in Indiana

3/25/02

235/169

kathy,

hi, I live in the Raleigh area and went home the day I was released from

the hospital (the 23rd) It weird, sometimes, now I cant believe how much I am

able to eat at times...I am going to try and not worry, let me know how your

progress is going

[Guest guest]

Hi , I live in the Raleigh area too, and would

love to chat re. mgb experiences, foods, vits etc.

Mine was in Jan. Bye for now jmanickam2000@...

--- kathy hamalian <1nhamalian@...> wrote:

> ,

> I feel like I missed out on the litter mate thing

> sometimes. Oh well, nice for you that you were able

> to go home. They were all very nice at the hotel

> and I was even able to bring my dog. But, there's

> no place like home!

>

> I know what you mean about eating so much! I feel

> like I eat all the time. My desires have changed.

> I used to eat a lot of breads, now I really don't

> enjoy bread. I seldom eat bread. If I go to Subway

> or anyplace like that, I will have a salad of some

> kind. It feels like bread gets inside me and

> expands. Feels like a rock in there. Whatever, I'm

> glad. I used to eat way too much bread. So it's a

> good thing now that I don't. I also don't enjoy

> eggs anymore either. Once in awhile, I think I want

> some and I will fix them but I end up throwing them

> away. Throwing food away, now that's a first for

> me! I wish I didn't enjoy chocolate!

>

> Well, let me know how the not worrying is going.

> It's usually easier said that done!

> Kathy in Indiana

> 3/25/02

> 235/169

>

>

> kathy,

> hi, I live in the Raleigh area and went home the

> day I was released from

> the hospital (the 23rd) It weird, sometimes, now I

> cant believe how much I am

> able to eat at times...I am going to try and not

> worry, let me know how your

> progress is going

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hello ,

that is so crazy!! I just saw an infomercial for the TEMPER-PEDIC

mattress this morning on tv, and was wondering if they really are as

good as they claim. The infomercial said they have a 5 or 6 month

money back gaurantee also!!! So, how much is expensive?? What do

you think a twin size would run. I wonder if they are more through

tv or the same price as tones. We don't live near one, but my

mother lives in Chicago area near one.

thank for your info and let me know if you have the price of the twin

size.

Blessings and prayers,

Tina ( 7 systemic)

> Hi gang...I do not post a lot but I read.....

>

> We have the TEMPER-PEDIC mattress from tone's...it was

designed by NASA

> for the astronauts, and the material is now used in mattresses..it

molds to

> your body, with the heat of your body to comform to your skeletal

> structure....its expensive but extremely comfortable....my son is 2

with

> pauci and he loves our bed, he sleeps there, with the least amount

of

> restlessness than anywhere else....we are looking at getting him

his own

> now.....cause his crib mattress in his infant bed is just not

> comfortable....its just thought....if you need info, if you do not

have a

> brookstones near you, etc...let me know........they have a FREE 90

day

> TRIAL...no questions asked if you are not satisfied, & 20 or 25 yr

guarantee.

> I think its worth the money.

>

> (Mom to Will, Pauci, 2yrs. old, almost 2 1/2!)

[Guest guest]

-

I read a little further and saw that you haven't made a decision yet, and that the alternative remedy was borage(?) oil. It is hard making those decisions. Good luck with whatever you decide.

Diane (, 3, pauci)

[Guest guest]

In a message dated 11/6/02 7:47:31 AM Pacific Standard Time, writes:

Message: 8

Date: Wed, 6 Nov 2002 06:40:28 EST

From: LDS143@...

Subject: Randy 11/06/02

The first doctor's report last night was encouraging. Another doctor came in several hours later and his was not. The second doctor said it will take a miracle, but it can happen. Please continue to pray.

, all of you will be in my thoughts. Best wishes.

Harper

[Guest guest]

Thanks Merribeth. I have received responses to so many and it's been both

spirit lifting and educational. My husband's PA has brought about so many

highs and lows in our family and sometimes it's too much and I have to cry

and then I read a post from someone who is out there and totally

understanding what I'm going through and my kids and mostly my wonderful

husband. He took his MTX Friday night (had to decrease dosage because liver

enzymes were up a bit). He is still sick feeling today and we've noticed

that when he takes it he hurts worse for two or three days after than

before. This is only his fourth week on it and there doesn't seem to be any

relief as of yet if anything, he's worse. He can barely walk yesterday and

today. He's so cold today too, (currently it's a bright, sunny 38 degrees F

here). I'm so full of hope that this is going to work but the more I read

the more I'm seeing from the rest of the group that it's other drugs that

seem to be doing the trick. Leads me to believe this isn't going to be over

with by any means at the end of his six weeks on MTX. Also, his rheumy said

nothing about protecting his stomach from his meds he's on and I'm also

concerned that his stomach lining is being harmed. We don't go back to see

him until Dec. 22nd and my list of questions has grown and grown!

Again, thank you for the encouragement to you and all. I really get a lot

out of this group! God Bless You!

[ ] To

I'm sorry for the delay in my responce, this week has been crazy!! I

was very touched by your post and I know what you mean about hearing

good news,it raises the spirit and gives encouragement. I myself was

recently diagnosed with PA, and it feels like it just leveled my

life. I have 3 girls ages 7, 8, & 11 and 2 step sons 19 & 14 it has

been hard on them too. Normally we go places and I play as hard as

they do and for a while now I've been watching from the side lines,

if I even go. The younger ones are too little to really understand

why I haven't been my normal self, and I know that the older ones

are disappointed, even thou they don't complain. And my poor husband

just wants his cheerful wife back! The pregnacy seems to have

improved the PA. I hope things get better for your family soon! If

you ever need someone to talk to feel free to e-mail me.

Take Care & God bless,

Merribeth

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

and many others who help moderate (thank you!)

[Guest guest]

shauna,

I have migraines and mine seemed to get better on the celexa. Im a lexapro girl in training. Im waiting for my appointment in January to switch. Im hoping that they stay away with the lexapro. I cannot take aspirin so excedrin migraine is out for me. I only take tylenol. Suz

[Guest guest]

My message was supposed to say " I have NOT been able to find them "

Thanks.