Re: (unknown)

[Guest guest]

Thanks for your words! Ive gained 30 lbs and its physically uncomportable as well as being unsightly. I rather be ALIVE!

Christi

[Guest guest]

,

It must be very hard on you to have all these nasty side-effects when

you weren't feeling sick in the first place. I can't stand the side-effects

and I was pretty sick. Besides I'm much older and after four children,

my body wasn't young and firm any more anyway. But I got so sick that I

weighed less than I did at 12 years old. So a little weight gain hasn't

hurt so much. I feel for you though. I would have died (metaphorically)

when I was younger. I guess I've turned philosophical in my middle-age

(42). I am getting this horrible facial hair and acne. My legs and abdomen

are bloating and my face is getting rounder. I still weigh about 115 so

that's not too bad yet. But, get this, I teach high school kids. I tell

them that I am sick with a liver disease and that I will probably get nasty

side-effects. They have been so understanding. Where as an outbreak of

acne would have humiliated me a few years ago, they understand. I guess

I don't much care what other people think. In fact, let them think what

they want whether it's an old acquaintance or someone who's never seen

me before. What can I control? No one but myself. I'm powerless over the

others. You are lucky that you have so many people to support you. You

are going to do great with that kind of support. Be positive--it makes

all the difference in the world. God bless,

Cheryl Id

Wilcher wrote:

Hi everyone. I heard about this group when

reading Colleen's story on her

Autoimmune liver disease. My mom found it for me and suggested

that I

should read it and then try out this group. Well, here goes!!

I was

diagnosed back in March, 2000 with Autoimmune Hepatitis. I had

no idea that

I had this. My family and friends started noticing that my eyes

were a

little yellow. When going to my family doctor they tested me

for every

Hepatitis disease and they all came back negative. They were

baffled. They

then sent me to a liver specialist. After doing some testing

and seeing the

results, he thought that it might be this Autoimmune Hepatitis, but

sent me

down to the University of Pennsylvania to see the head of the department

for

a second opinion. After doing tests he confirmed that it was

Autoimmune

Hepatitis. Then he wanted to perform a liver biopsy to see how

much damage

has been done. His first attempt failed because my liver was

too small and

he didn't want to do any additional damage. He then arranged

to have a

biopsy done where they go in through the neck and down. That

was a painful

process. They gave me some sedation, but I was awake and felt

everything.

I never want to go through another one of those again. After

all was said

and done, he put me on prednisone and Immuran. He started me

off on

20mg/day of prednisone, and 100mg/day of Immuran. Within 3 months

I gained

exactly 30 pounds. The weight has never gone higher than that,

but I'm

still devastated with the weight. I was a petite, 125 pound girl

who never

had a weight problem ever. And I never thought that I would.

Then from all

the sudden weight gain, I got horrible, dark purple strectch marks

on my

waist, hips, thighs and calfs. I was too embarassed all summer

to get into

a bathing suit and short shorts. I hate being like this.

My doctor has

been slowly decreasing my medicine (now 10mg/day of prednisone and

still

100mg/day of Immuran), but the weight just doesn't budge. I don't

over-eat

either. It's driving me crazy!!! I'm even embarassed to

see people that I

haven't seen since before the weight gain for fear they may say something

about my weight. People don't even recognize me. It's so

embarssing.

Then, recently, I went into the hospital with kidney stones.

I spent 7 days

in the hospital because one was so badly stuck that I ended up becoming

ceptic, and then I got pneumonia too. The urology doctors believe

that the

stones were caused by the prednisone, but they won't know for sure

until the

test results come back. I've asked my doctor countless times

if he could

put me on another drug that is comparable to prednisone that doesn't

have

the awful side affects (weight gain and stretch marks). He keeps

telling me

that this is the best thing for me right now. Does anyone know

of any other

drug? I hope that there is something out there. Also, if

anyone else got

stretch marks from the weight gain, do you know of anything that actually

worked for making them go away? I tried Vitamin E stuff, but

that hasn't

showed any results. I'm very depressed about the whole thing,

especially

because I never felt sick in the first place. I just dream of

the day when

I can fit into my size 6 jeans again. Oh, and to top everything

off, my

doctor told me when I was last there that there is a possibility that

someday I may need a liver transplant anyway. So I got upset

because I feel

like I'm going through all of this for nothing. I'd just rather

have the

transplant then and be done with it. But then again, I heard

that the

anti-rejection drugs you have to take after the transplant cause a

tremendous amount of weight gain. This is all so frustrating.

Does

everyone else feel the way that I do? I'm at least thankful for

my caring

family, friends and boyfriend who are sticking by me through everything.

Please, write back and share your stories and information with me.

I am

really in need of some advice and suggestions. I hope to hear

from you

soon. Thanks.

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[Guest guest]

Amy,

Thanks for sharing your story. Make some minor changes, and it could

be any of our stories. I think that's what binds this group together,

we have all been there.

Best wishs for you and your family, Jana

[Guest guest]

In a message dated 1/12/01 6:23:34 AM Pacific Standard Time, stephwilcher@... writes:

My doctor thinks that it's a possibility that I'll never be able to come off the nasty drug.

My doctor told me, when I was diagnosed, that Prednisone would be a lifetime thing. However, a friend who also must take Prednisone forever for a kidney transplant says he's gotten used to it, no longer has side effects.

Harper

[Guest guest]

Leah,

hehe, nice e-mail about the e-mail that you got from a friend from abotu the

Surviovors family. I enjoyed it, it's kind of funny after I finished

reading it.

>

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[Guest guest]

Mohammed, I don't know enough to give you any suggestions, but welcome to the group.

Harper (AutoImmune Hepatitis 5/00)

[Guest guest]

Thank you, Amy and Mike, for sharing your story with us I hope your

daughter's birthday party is lots of fun. I remember how sad it was for

me when, after just learning how to ride rollerblades really well, my

son's arthritis came on and he wasn't able to hardly walk anymore,

nevermind ride his rollerblades. They were placed on a shelf in the back

of the closet and sat there gathering dust for many, many months. So

long, in fact, that by the time he had had some improvements and was

doing much better, finally felt ready to try them again, they no longer

fit! Needless to say, he got a new pair when his next birthday came

around.

may not rollerblade as well as most of his friends. He may not

ride as fast or be able to do some of the daredevil tricks they like to

do ... but he is able to strap them on and go for a ride when he's in

the mood. I think he gets more enjoyment from rollerblading than many of

the other children do. He remembers when it was a struggle and knows

that it's one that he has overcome

Take care,

Georgina

foxkits3@... wrote:

>

> Hello,

> Thanks for the welcome. We are still so new to this whole thing.

> Our daughter was diagnosed in September, after 1 1/2 yrs. of very

> frustrating Drs. visits. We were at our Childrens Hospital and she

> went undiagnosed. Finally out of sheer desperation, a friend

> recommended a Rhuem. Only problem was that she only handled adults.

> I must have sounded pretty desperate when I called. They agreed to

> see her. As she was 14 1/2, we were just under the line. One of the

> first things that she told our daughter was " your not crazy " , " we

> will find out whats going on and control it " . The change from then

> to now is amazing. Our girl is walking on her own, feeling so good,

> gained some weight back and looks so good. Planning a rollerskating

> party for her b-day! Still have the ups and downs. In the middle of

> good flare right now. Mouth sores from new meds, etc.... At least

> we now know whats happening. I wondered in the beginning if we did

> feel better once we knew. How scary those words sounded. I have

> grandmother who has JRA. Bent hands and feet, constant pain. It was

> a scary picture for us to see. Then we got educated. We all feel

> better and are settling into living with this thing. Some times we

> laugh and sometimes we cry.

> Thank you for being someplace where we can connect with those that we

> a sharing this experience with.

> Amy & Mike Fox

[Guest guest]

I don't have much of a history with colds... is 7 months old and

other then a few stuffy nose days, she hasn't really had a cold and we live

in pa where it has been pretty cold out lately... though breastfeeding her

may have helped in that area...

ann

[Guest guest]

Blood tests usually show lead, also hair, the later being scoffed about, but

I believe in it personally.

Kathy

[ ] (unknown)

>Hi Group,

>

>Does anyone know of a medically-recognised test for stored

>lead that can be done on a living person? I am asking this question

>for a friend on another list whose son had a hair analysis done that

>showed lead. A later test showed it to be within the normal range but

>she is concerned that it may be stored in his bones.

>

>Thanks,

>

>

>

>

>

>_

>

>

[Guest guest]

(27, DS) used to have colds and sinus infections all the time. When

we moved out of a heavy industrial area to our Island, they went away.

Whenever we go back to visit, they return. Needless to say, we don't visit

often. Those polluting industries should be charged with child abuse!

Industrial pollution may not be your problem, but thought you'd be

interested in our experience.

granny

---

" Beautiful that war and all its deeds of carnage must

in time be utterly lost. " -- Walt Whitman

http://home.earthlink.net/~bspyle

(unknown)

> Hi. I was wondering if they were any members that live close or in

> Alabama. If you do please let me know. I would also like to know if

> their is anyone with a baby or toddler who has problems with colds.

> My daughter is 4 months old and has had a head cold most of her life.

> It clears up for a little while and then comes back. I was just

> wondering how common this is.

> Shelby

>

>

>

[Guest guest]

In a message dated 1/16/2001 3:26:38 AM Pacific Standard Time,

bspyle@... writes:

<< ndustrial pollution may not be your problem, but thought you'd be

interested in our experience.

granny

--- >>

Industrial polution has never been 's problem, (only air pollution

around here is the dairyaire a few times a year, hehe) actually as a

infant/toddler she was bascially pretty healthy, but when she entered school

started to have problems.

while you have linked s problems to polutants in the air, s' most

likely were caused by plant pollen. Rag weeds a big one. something in the air

in kansas and iowa in July was a biggy to, evidently it's notaround here

cause she didn't have the hayfever when we left home, and also there was

those flowers that she touched while walking to DL in California, that plant

was an instant eye waterer for her when she touched it. LOL once we

controled the 'rag weed' /pollen allergies , espeiically in the fall when she

was around lots of kids and all the germs associated with being in school

:-), in the fall she hasn't had many problems. Amazing really.

Tho if we don't keep her sinuses fairly clear during allergy time she usually

does end up with some type of infection that's hard to getrid of. So I say

keep plant/pollen/animal allergies in mind to. :-)

Joy

[Guest guest]

Can someone tell me how you go about obtaining a " hair analysis " . I would like

my son who has seizures to have it done. Is it done at a doctor's office. I

know someone who said they had it done at a hair care salon? Different thing I

guess.

[Guest guest]

This message was posted on another list. It sounds like the information

will answer your question though.

~Karma

You can get a hair test from Body Balance for $60.

See www.bodybalance.com. The info there includes a

list of the elements they test. I think it includes

both toxics and nutritional minerals. I have the

paperwork, but it is probably better if you go read it

from them than if I pick some subset of the info to

tell you.

It is $60 plus postage, and you get a " kit " in the mail.

I think the directions are clear in the package, they

answered all my questions.

The kit comes with a legal form you must sign that says

you will not use the info for diagnosis, and that if you

want any interpretation of it you will seek a licensed

medical person.

Body Balance is a subsidiary (or something) of Great Smokies

lab. If you call Great Smokies and ask about a hair test,

they will tell you that you need a doctor to order it.

Body Balance has several " consumer " tests that they offer

as " health screening " tests. The other ones may be of

interest to look at to. I think there is a hormone test.

There are about 6 different ones (www.bodybalance.com)

IMPORTANT: the amount of mercury in your hair can be VERY

different than the amount in your body. (I know I already

said this, but I want to say it again because I don't want

anyone to do the test and then think " oh I'm fine " . I've

heard that doctors make this mistake as well: do a urine

test and then think things are okay if not much mercury.

NO NO NO, that is NOT how it works!!)

As far as I know the other toxic metals on the hair test

should reflect properly whether you are toxic. I don't

really know a lot about that though. There are several

other toxic metals. Aluminum, copper, etc. People write

in about those as well on the autism treatment list.

----- Original Message -----

> Can someone tell me how you go about obtaining a " hair analysis " . I would

like my son who has seizures to have it done. Is it done at a doctor's

office. I know someone who said they had it done at a hair care salon?

Different thing I guess.

[Guest guest]

Hi Dawn,

I have an article by Dr. Rose citing iodine as a trigger of autoimmune

thyroid disease. Furthermore, allergic reactions are known to stimulate the

immune system and trigger GD. So I definitely think you're right about the

iodine contrast dyes. Elaine

[Guest guest]

Hello all,

From what I have read it's the lack of iodine that causes graves

Raven

daisyelaine@... wrote:

> Hi Dawn,

> I have an article by Dr. Rose citing iodine as a trigger of autoimmune

> thyroid disease. Furthermore, allergic reactions are known to stimulate the

> immune system and trigger GD. So I definitely think you're right about the

> iodine contrast dyes. Elaine

[Guest guest]

Your attachment is infected with the

W95.MTX.dr virus.

Glenda

(unknown)

[Guest guest]

In a message dated 1/19/01 1:24:04 PM Eastern Standard Time,

brink_00@... writes:

<< >Donna,

Thanks for explaning it. So a pediatric gastroenteroligist looks at all

children, or children with GERD? How come the child has GERD, I mean what

makes a child have GERD? Is is curable, so medicane is the only thing that

can controll it?

>>

,

A pediatric gastro doc looks at all children with GERD, as well as other

intestinal, stomach, esophagus problems, bowel problems, food allergies.

GERD is what they call a motility problem (which means to be able to move

spontaneously). The acids in the stomach keep coming back up into the

esophagus and this causes the esophagus to become enflamed (esophagitis).

It's very painful and needs to be controlled, because left untreated, can

lead to cancer of the esophagus. Sometimes, when it is severe and children

are failure to thrive or keep getting fluid in their lungs (a very bad

condition), docs will do surgery called fundoplication. This procedure

involves wrapping the esophagus around the stomach. Children with DS are

more susceptible to having GERD, probably because of their low muscle tone.

Donna

[Guest guest]

In a message dated 1/19/01 1:29:42 PM Eastern Standard Time,

brink_00@... writes:

<< Sorry if I'm writting this late. I had to think of what to write and I

was

in a car accident Tuesday evening. Y'all keep the sence of humor going,

ya'll really make me laugh. 4 o clock am! What are you doing still up. At

least I wake up at 6 35 am every weekday for class, but I have an excuss.

Hehe >>

YIKES !!! That sure wasn't ME up at 4 am. I think it is Gail you

are talking about. Seth was up and adam and poor Gail was too. Are you

feeling ok since your accident ?

Donna

[Guest guest]

Donna,

ok, thanks for explaining that Gail was up at 4 am. Yeah, I'm ok. . it will

take like a month or 2 months to get the accident off my mind. At least I'm

telling all my friends, so that's good.

>

>

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[Guest guest]

Go to e-groups web site and check out post # 9308. We never did figure

out why my buttermilk soap turns black when I make it in the winter and

a beautiful buff color when I make it in the summer.

I don't heat the oils... everything is at room temp. Nothing gets " burnt " .

I even cure the soap in the refrigerator!

I make the soap in a glass bowl using a stick blender and wooden spoon.

No metals (not aluminum, not even stainless steel.)

My latest theory is EO's vs FO's. I scented my summer batch with lavender

EO. This winter, I scented it vanilla and sugar plum. Both batches

turned black. (When I say " black " , I mean, people who come into my house

mistake it for dark chocolate bars!)

Hence, my latest EO vs FO theory. I still don't know how it turned black.

But, someone else online took my recipe and is going to see if she can

duplicate it. I am waiting with bated breath for the results! She actually

LIKES the black soap!

Any ideas????

--

Marcelle Karustis

mkarustis@... - email

(973) 776-3900 x7867 - voicemail/fax

-

> marcelle i would love to hear more about your black soap! dolores

>

>

>

[Guest guest]

Now, on this message, I clicked the private " reply " button and it went

out to the list. I thought you guys said the change wouldn't affect

the way I do things through the list!

It did! I just sent something inadvertently to the listserv that I thought

I was sending to the private person.

Just for test purposes, I am clicking " Reply " only again instead of " Reply

All " to test this theory. If this goes out to the list, then you DID

change the way my buttons perform in my email software!!!!

--

Marcelle Karustis

mkarustis@... - email

(973) 776-3900 x7867 - voicemail/fax

---- " Marcelle " <MKarustis@...> wrote:

> Go to e-groups web site and check out post # 9308. We never did figure

> out why my buttermilk soap turns black when I make it in the winter

> and

> a beautiful buff color when I make it in the summer.

> I don't heat the oils... everything is at room temp. Nothing gets

> " burnt " .

> I even cure the soap in the refrigerator!

> I make the soap in a glass bowl using a stick blender and wooden spoon.

> No metals (not aluminum, not even stainless steel.)

> My latest theory is EO's vs FO's. I scented my summer batch with lavender

> EO. This winter, I scented it vanilla and sugar plum. Both batches

> turned black. (When I say " black " , I mean, people who come into my

> house

> mistake it for dark chocolate bars!)

> Hence, my latest EO vs FO theory. I still don't know how it turned

> black.

> But, someone else online took my recipe and is going to see if she

> can

> duplicate it. I am waiting with bated breath for the results! She

> actually

> LIKES the black soap!

> Any ideas????

> --

> Marcelle Karustis

> mkarustis@... - email

> (973) 776-3900 x7867 - voicemail/fax

>

>

>

> -

> > marcelle i would love to hear more about your black soap! dolores

> >

> >

> >

[Guest guest]

Marcelle,

Vanilla will always change the color to buff, brown or darker. This has

been my experience I believe it has to do with oxidation and temps. I had

some green/yellowish soap that was buff/tan. I found a bar that I had put

in a drawer in a room I don't use so I don't heat that room. It has turned

the color of melted dark chocolate.

Renie

We never did figure out why my buttermilk soap turns black when I make it

in the winter and a beautiful buff color when I make it in the summer.

[Guest guest]

My sugar plum scented soap turned black, too.

--

Marcelle Karustis

mkarustis@... - email

(973) 776-3900 x7867 - voicemail/fax

---- " Spellworks, Inc " <spellworks@...> wrote:

> Marcelle,

>

> Vanilla will always change the color to buff, brown or darker. This

> has

> been my experience I believe it has to do with oxidation and temps.

> I had

> some green/yellowish soap that was buff/tan. I found a bar that I

> had put

> in a drawer in a room I don't use so I don't heat that room. It has

> turned

> the color of melted dark chocolate.

> Renie

>

> We never did figure out why my buttermilk soap turns black when I

> make it

> in the winter and a beautiful buff color when I make it in the summer.

>

>

>

>

>

>

[Guest guest]

> LIKES the black soap!

> Any ideas????

a lot of great recipes have come about by accident. You may be a great

inventor barbW

[Guest guest]

Donna,

okay I think I understand what a pediatric gastro doctor is. Thanks for

expaining it thouh.

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