Kay

[Guest guest]

----------

Kay,

You go for it. Hang in there, you sound like you are doing just great.

Positive is good.

SueB.

[Guest guest]

Dear Kay,

thanks so much for your info. It was very helpful. I'll have to get a copy

of my pathology report this week when I go back to the specialist. I also

tested negative for mitochondrial antibodies but also read that 10% of

people with PBC do. PBC is what I expected the doctor to tell me when I saw

him a few weeks ago. AIH came out of left field for me because I hadn't

heard of it in all of my internet research I had done before I went back to

him. Is AIH all that rare? There doesn't seem to be as much info on the

internet about AIH as PBC....

thanks again,

Beth, AIH 10/00, 33, MI

[ ] Beth

> Beth, dx confusion re PBC vs. AIH is not as rare as we think it should be.

> After blood tests and my first bx in 1995 I was diagnosed with AIH due to

> ANA and ASMA. (I had had elevated liver enzymes since 1990 without dx.)

> Once sentence of my bx results states: " In the presence of a chronic

> hepatitis picture with granulomas, however, the possibility of primary

> biliary cirrhosis must always be considered... " I did test negative for

> autoimmune mitochondrial antibodies, present in 90% of PBC cases. I knew

> none of this until I requested my records in 1999, prior to my first visit

> with a hepatologist.

>

> I had been tormented for months with intractable puritis and increasing

alk

> phos. After my second bx, DONE AT MY REQUEST, still AMA negative in blood

> tests, the hepatologist decided to add Imuran and Actigall to my treatment

> (previously only prednisone). In one month all labs were normal. I began

> the pred wean while continuing the Actigall and Imuran. Nothing but

normal

> labs since. About 2 months ago, out of nowhere, I started to get angry.

> Should I have been treated for AMA-negative PBC all along? How much

> unnecessary damage was done in those 4 years? I still don't know whether

> the improvement is due to Imuran, Actigall, or both. I don't know whether

I

> have PBC, AIH or both. I am not willing to experiment medically to find

> out. My doc just calls it the crossover syndrome.

>

> Long answer to short question. Just my experience. Don't worry, just

never

> stop investigating, asking questions, demanding what you need to know in

> order not to be undertreated.

>

> Blessings,

> KayK in Austin

>

>

>

>

>

[Guest guest]

In a message dated 1/13/01 2:27:59 AM Pacific Standard Time, Kaytarot@... writes:

hankyou for caring. What I found out on my road to healing was that Fear and Guilt causes liver disease. My child got (put it this way) something she didnt deserve, and the guilt ate me up. When I got to the root of the problem and learned self forgiviness, I was on my road to healing (emotionally). So, the desire to drink away the pain isnt there. This disease was also caused from taking too much tylenol also, I would take 6+ a day on an empty stomach.

And I take great pride in killing that demon that tried to kill me.

Alcohol. So, dont worry, I love ice tea too much now

Kay

One thing I kept thinking about last night (didn't sleep much) was that I wished I'd remembered to mention one thing -- that by getting this far you've already done something that takes a lot of strength, you have done something to be very proud of.

I'm sorry about your daughter's problem. That's really hard. I hope she's getting all the help possible. People can get over that, they do get over it, but, as I've seen personally, it goes a lot easier with help.

Harper

[Guest guest]

Christi, It is I (Cheryl), not Kay, who has the addict daughter. Thanks

for the advice. We have kicked my daughter out of the house--finally. In

fact, When she comes over and starts attacking me (verbally) I make her

leave--even though she's here to see her daughter (whom we have temporary

custody of), she has to go. We needed to have her out a long time ago.

I go to a 12-step support group when I'm well enough. It's helped lots.

Addictions are so destructive physically, mentally, and spiritually. The

12-step programs are great and do work. Cheryl ID

christibro33@... wrote:

Dear

Kay, at one time I was in school to be a drug counsler, (short was too

ill

to continue) the main thing with your daughter is a drug addict

blamesEVERYBODY

but themselves. They will even blame intangible things, like

God,

where they live etc. Anything so they don't have to see reality. She has

an

illness too, but hers dosnt show up in labs, so she can't fathom a real

illness.

you have to take care of you, and your other kids. Sometimes

temporarily

cutting strings is someting you must do for your self and the

rest

of the kids. It dosnt mean you love her any less, its that she has to

realize

herself that she needs major help, and can't use others as a

scapegoat.

So take care of you ok Kay?

Christi

[Guest guest]

Hi Kay, I have been a member of this group for quite a long time and seldom

post but I had to get my 2 cents in on the subject of vicoden and other

drugs. I have had AIH since 1996 and have been treated with pred. and

Imuran. I have been on just 100 mg. of Imuran for the last 4 years. As with

most of us, I have more than one autoimmune condition and have to take drugs

for those problems as well. I have a gallbladder problem and was given

Vicoden for the pain by the hep. doc who treats my AIH. I took it to get

through a tough time. I think Geri also took a vicoden at night to help with

her pain. So you are not the only one who has been prescribed this drug. I

know it can be a drug that causes big problems for some people and you need

to be aware of that. It also makes me have nightmares. It isn't easy being

sick and sometimes we have to do thigs to treat one problem at the risk of

harming another. I just wanted you to know that I have taken this before and

it was prescribed by the chief of hepatology at IU med. Center in

Indianapolis. I hope you feel better soon. Jane Totten

[Guest guest]

Kay,

I wish I could hug you and say there there. You need to be taken care of

without stress.

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

Kay, I am so glad you found support and inspiration through new friends here on the group, and have faith that keeps you strong. You have been through so much...it is sometimes the pain that makes us better, stronger people, isn't it? I appreciate your willingness to take up the torch for spreading the truth about breast implants! We can't stop our efforts to let others know--there is so much that is not being said in those doctors offices.

And like you, I am totally blessed by the faith of the women expressed on this group. I couldn't have asked God to strengthen me any more than by surrounding me with other women who know and understand the comfort that God gives.

Hang in there! When is your explant scheduled?

Patty

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

From: kayvarni

Sent: Monday, August 25, 2003 1:52 PM

Subject: How are you Vicki?

Vicki:I understand How you feel, I feel down the stairs the other night I sat at the bottom and cried, I was so tired no energy. This really urks!!!! Hows the broken bones? I feel for you, It's bad enough trying to heal without added injuries. I just keep thanking God for the miracles in my life and how far I have come in my own strength(faith). I call it a faith of strength. We know alot about the Silicone problems and the struggle, yet, there is still so much more untold in our individual lives that we have already over come. And here we are a bunch of strong and determined women brought together for an awsome awakening. God help those that destroy the moms and the babies. .....we will see Justice, hang in there, try to get some sunshine, when nothing else works I sit outside and look up and smile until I start laughing, then I realize, I am not alone I have ALL you new found friends, a true miracle of God.I was completely alone all day most of the nights(my Husband works long hours)I nolonger visit with friends, no energy, they don't understand, they don't know. Now he brought me here. I talked to two people in 3 weeks that canceled there saline implant surgery appointments. Knowing I helped them is only because of all you.Hugs and InspirationK Varni, CaliforniaP.S. Its all the faith I see in all you that keeps me Sane.

[Guest guest]

Thanks for the thoughts. I am very interested in the antibiotic therapy too. What type of doctor did you go to who would work with you on leaky gut syndrome and antibiotics? I live near a big city (Kansas City) so surely I can find someone here?

Kath

[Guest guest]

Hi Kay,

My right side is affected more than my left side....wonder how many others are like this. It surprised my doc as he said RA was usually a symmetrical illness.

Lynne

[Guest guest]

I believe that, too.

My parents keep trying to get me to try Usana, which helped my sister get her toxins out. She has pcos and got pregnant this year after 8 years of trying, when she used it. I like the vitamins, but am afraid of doing the cleanse because i have a suuuuper slow metabolism and don't want to put on any more weight.

So far it's done wonders for everyone else, though.

YellowKay Simpson <Siwelyak@...> wrote:

Rie, No, I did not see a dietitian per say but this guy who works with my dochelped me get on the correct road with my food and gave me charts withalkaline foods and acidic foods. Basically, folks today are eating too muchacidic food when our bodies need more alkaline. I found a website withwheat-free stuff at glutensolutions.com too. I could still improve onthings much more by eating more green stuff...kale, bok choy, spinach. Ican now cheat a little and get away with it cause I think my intestines arein a bit better shape staying away from sugar, milk, and wheat. The bodycan sort of heal itself if we help put the right things in it I believe. Kay----- Original Message ----- From: "Rie" <ravencache@...>To:

<Rheumatoid Arthritis >Sent: Friday, September 10, 2004 10:44 PMSubject: Re: Kay> Kay,> I've been interested to read about all the variations> in diet people have been discussing, but I find myself> wondering what do you eat??? Seriously, I've thought> about trying to change my diet, but I read that I> would have to cut out all the foods I love and exist> on...potato, pasta, many veggies I love, cheese, ice> cream? Also, my jaw is a major trouble, and I usually> try to keep my foods semi-soft...not chewy/hard. Lots> of soups.>> Did you see a dietitian?> Rie> ~~~~~~~~~~~~~~> Message: 4> Date: Thu, 9 Sep 2004 22:25:25 -0500> From: "Kay Simpson" <Siwelyak@...>> Subject: Re: Hello>> Wally,> I take a lot of vitamin C and omega-3

fish oil. I> still take> anti-inflammatory but also use a potent berry juice> full of antioxidants.> I am careful with diet - no milk, no sugar, no wheat,> no caffeine, no> soft drinks.> Good luck finding some help,> Kay>>>>>> __________________________________> Do you ?> New and Improved - 100MB free storage!> http://promotions./new_mail>>>>>

[Guest guest]

I have not heard about Usana. I tried some cleanse stuff and got diararrhea bigtime. My system is SO sensitive.

Kay

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

From: yellow dancer

Rheumatoid Arthritis

Sent: Saturday, September 11, 2004 12:12 AM

Subject: Re: Re: Kay

I believe that, too.

My parents keep trying to get me to try Usana, which helped my sister get her toxins out. She has pcos and got pregnant this year after 8 years of trying, when she used it. I like the vitamins, but am afraid of doing the cleanse because i have a suuuuper slow metabolism and don't want to put on any more weight.

So far it's done wonders for everyone else, though.

YellowKay Simpson <Siwelyak@...> wrote:

Rie, No, I did not see a dietitian per say but this guy who works with my dochelped me get on the correct road with my food and gave me charts withalkaline foods and acidic foods. Basically, folks today are eating too muchacidic food when our bodies need more alkaline. I found a website withwheat-free stuff at glutensolutions.com too. I could still improve onthings much more by eating more green stuff...kale, bok choy, spinach. Ican now cheat a little and get away with it cause I think my intestines arein a bit better shape staying away from sugar, milk, and wheat. The bodycan sort of heal itself if we help put the right things in it I believe. Kay----- Original Message ----- From: "Rie" <ravencache@...><Rheumatoid Arthritis >Sent: Friday, September 10, 2004 10:44 PMSubject: Re: Kay> Kay,> I've been interested to read about all the variations> in diet people have been discussing, but I find myself> wondering what do you eat??? Seriously, I've thought> about trying to change my diet, but I read that I> would have to cut out all the foods I love and exist> on...potato, pasta, many veggies I love, cheese, ice> cream? Also, my jaw is a major trouble, and I usually> try to keep my foods semi-soft...not chewy/hard. Lots> of soups.>> Did you see a dietitian?> Rie> ~~~~~~~~~~~~~~> Message: 4> Date: Thu, 9 Sep 2004 22:25:25 -0500> From: "Kay Simpson" <Siwelyak@...>> Subject: Re: Hello>> Wally,> I take a lot of vitamin C and omega-3 fish oil. I> still take> anti-inflammatory but also use a potent berry juice> full of antioxidants.> I am careful with diet - no milk, no sugar, no wheat,> no caffeine, no> soft drinks.> Good luck finding some help,> Kay>>>>>> __________________________________> Do you ?> New and Improved - 100MB free storage!> http://promotions./new_mail>>>>>

[Guest guest]

> Kay,

> I've been interested to read about all the variations

> in diet people have been discussing, but I find myself

> wondering what do you eat??? Seriously, I've thought

> about trying to change my diet, but I read that I

> would have to cut out all the foods I love

I'm not Kay, but I've been eating low carb for six years now. I am hypoglycemic

and my husband is an insulin dependent type 2 diabetic.

I eat some carbs every day, about 80 to 100 grams. I do not do Atkins, and I do

not go into ketosis. I use a diet called Carbohydrate Addicts (google it).

Unlike other low carb diets, you can eat carbs once a day. That means you don't

have to totally give up your favorite foods, but you can't gorge yourself on

them. I lost about a pound a week on the diet, and have kept it off for six

years, (with a few cheats, that cruise put me back up ten pounds, but I took it

back off again easily).

For breakfast I eat eggs with bacon, or ham or cheese, usually in an omelette

with diced peppers etc. I also eat low carb pancakes (2 grams each) or low carb

muffins (two grams each). I try to keep my breakfast under five grams or so.

There are so many low carb products out there now that you can eat.

For lunch it is usually a salad with grilled chicken or tuna, or a cold cut

plate with meat and cheese and veggies and maybe a dip for the veggies.

Dreamfield's pasta is delicious and only has five grams in a HUGE serving. It

makes an awesome pasta salad with chicken or tuna or hard boiled eggs.

Most of the fast food chains now have low carb salads available. There are

also low carb tortillas but they are a little high for my lunch except on an

occasional basis. Again, I try to stay under five or six grams.

For dinner I eat a basically ordinary meal, keeping my carbs at around 70 to 90

grams. That means I can have a small potato, roll, corn on the cob, peas,

beans, pasta (I don't eat any pasta except the Dreamfield's though. It tastes

better than regular pasta!) I usually have a fruit salad with dinner to get in

my fruit for the day. I don't eat sugar, though. I have been sugar-free for

about fifteen years, ever since I was diagnosed with hypoglycemia. There are

some wonderful sugar-free, low carb desserts out there, though.

Check out the group low-carb-recipe-exchange for some great recipes. Most

of the people there are on Atkins or South Beach.

Sharon

[Guest guest]

http://unitoday.net/hard_body4life

yeah, usana works. sorry not writing much now. it's worth checking it out, anyway.

yellowKay Simpson <Siwelyak@...> wrote:

I have not heard about Usana. I tried some cleanse stuff and got diararrhea bigtime. My system is SO sensitive.

Kay

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

From: yellow dancer

Rheumatoid Arthritis

Sent: Saturday, September 11, 2004 12:12 AM

Subject: Re: Re: Kay

I believe that, too.

My parents keep trying to get me to try Usana, which helped my sister get her toxins out. She has pcos and got pregnant this year after 8 years of trying, when she used it. I like the vitamins, but am afraid of doing the cleanse because i have a suuuuper slow metabolism and don't want to put on any more weight.

So far it's done wonders for everyone else, though.

YellowKay Simpson <Siwelyak@...> wrote:

Rie, No, I did not see a dietitian per say but this guy who works with my dochelped me get on the correct road with my food and gave me charts withalkaline foods and acidic foods. Basically, folks today are eating too muchacidic food when our bodies need more alkaline. I found a website withwheat-free stuff at glutensolutions.com too. I could still improve onthings much more by eating more green stuff...kale, bok choy, spinach. Ican now cheat a little and get away with it cause I think my intestines arein a bit better shape staying away from sugar, milk, and wheat. The bodycan sort of heal itself if we help put the right things in it I believe. Kay----- Original Message ----- From: "Rie" <ravencache@...>To:

<Rheumatoid Arthritis >Sent: Friday, September 10, 2004 10:44 PMSubject: Re: Kay> Kay,> I've been interested to read about all the variations> in diet people have been discussing, but I find myself> wondering what do you eat??? Seriously, I've thought> about trying to change my diet, but I read that I> would have to cut out all the foods I love and exist> on...potato, pasta, many veggies I love, cheese, ice> cream? Also, my jaw is a major trouble, and I usually> try to keep my foods semi-soft...not chewy/hard. Lots> of soups.>> Did you see a dietitian?> Rie> ~~~~~~~~~~~~~~> Message: 4> Date: Thu, 9 Sep 2004 22:25:25 -0500> From: "Kay Simpson" <Siwelyak@...>> Subject: Re: Hello>> Wally,> I take a lot of vitamin C and omega-3

fish oil. I> still take> anti-inflammatory but also use a potent berry juice> full of antioxidants.> I am careful with diet - no milk, no sugar, no wheat,> no caffeine, no> soft drinks.> Good luck finding some help,> Kay>>>>>> __________________________________> Do you ?> New and Improved - 100MB free storage!> http://promotions./new_mail>>>>>