New to Group

[Guest guest]

Better late than never..welcome to the group Stella,I had steroid shots

in my back 2 weeks ago and havnt been online much hurts to sit here

long.looking forwardd to getting to know you.

-- In neck pain , " Stella " <stella44446@...>

wrote:

>

> hello everyone. I'm new here. Not very good with the computor so

> will see how this goes.

>

> I suffer with chonic neck back arm leg pain and severe headaches like

> many of you. I look forward to being a part of this group and look

> forward to learning about everyone and learning from everyone.

>

[Guest guest]

Better late than never..welcome to the group Stella,I had steroid shots

in my back 2 weeks ago and havnt been online much hurts to sit here

long.looking forwardd to getting to know you.

-- In neck pain , " Stella " <stella44446@...>

wrote:

>

> hello everyone. I'm new here. Not very good with the computor so

> will see how this goes.

>

> I suffer with chonic neck back arm leg pain and severe headaches like

> many of you. I look forward to being a part of this group and look

> forward to learning about everyone and learning from everyone.

>

[Guest guest]

Thank you for your response, I am nervous when I join a new group, I

hope to be of support to all of you.

Right now I have 2 slighty bulging cervical disc's, trauma to the

thoracic area and the lumbar area. I gained possession of these from a

car accident in 1988. As I became more disabled with chronic

conditions, I became unable to exercise due to the inability to sweat,

so naturally I gained weight, anyone who has lower back prob's can

relate to this. I'd had 4 abnomial(sp?) surgeries which trashed

whatever muscles I had, I can't say I was all that physically

fit/active, which of course exacerbates the pain and symtoms. But I'm

very aware that it'll get worse as I get older. I was referred to a

spine institute specialist. Very nice and gentle Dr. 'to gentle' he

wrote in his report that he'd palpated my neck and I had no rash, I

had a turle neck on and he never touched me; plus I've had a skin rash

for over 30 yrs, as if that wasn't enough he took me to another exam

room to show me some xrays of an MRI, I found this amusing since I've

never done the MRI, I was unable to continue the test becuz a full

blown panic attack..............so this Dr said that the only reason

my back had such pain was due to my smoking cigarrette's. In making

every effort to be respectful to my PCP's college buddy, I asked him

what I should do? He was obviously slightly annoyed with my complaint.

I asked point blank 'should I give this Dr another to revise his exam

report? My PCP didn't answer and left the room............huh?

Thankyou for your inquiry, I am glad to be here and look forward to

sharing and discussing ideas, experiances, what works to help relieve

pain. Since I posted my greeting to the group I got up and used my

treadmill and make an effort everyday, I wear a back brace with an ice

pack. The diet is what it is becuz of all the conditions and meds I

actually wouldn't be able to eat anything, not even water, I just eat

what doesn't hurt as much.

So even that the members have posted their stories I'd like to hear

them and any advise on pain control will be greatly appreciated, Trena

>

> Hello Trena. Sounds like you have a lot to deal with. Do you know

what your specific spine concerns are? Have you had an x-ray? Most

chiropractors require you to have standard x-rays (full length from

side and front) for about $165 before they will even touch you, and

that's probably a basic way to start to know if anything obvious is

going on. You are not required to have an adjustment just for

visiting a chiropractor and getting x-rays done. Or you might

consider getting basic x-rays done somewhere else, but usually that

requires a doctor visit/counsultation, which would add to the cost.

The only benefit that I see in getting x-rays done at a chiropractor's

office is that they take them while you are standing up (weight

bearing) and that tends to show more accurately what is happening to

your spine. Most hospitals take them with you laying down and that

does not give a very accurate view, from a positioning standpoint.

>

> From what I've seen in the lay-on-this-and-it-will-fix-your-spine

gadgets, they usually aren't what you want to spend $ on. When

considering a " tool " that is claimed to help spine problems, look for

how long the product has been out on the market (that eliminates about

90% of the get-rich-quick gadgets) and for actual satisfied customers

(not paid commercial kind).

>

> Other problems you have that exacerbate your spine? I have those

too, including hip bursitis on one side and knee problems on the

other. Not fun! But it sure does help when some of the other

problems can be taken care of and provide progress in your overall

general health.

>

> Wow, 7 years going to the same doctor . . . I think my record was 5

and that was in my childhood. <G> Wouldn't hurt to get a different

opinion from somebody else and see what they have to say. Some

clinics will have a discount rate for your first visit - they are hard

to find but out there.

>

> Debbie Dahl

>

>

[Guest guest]

Thank you for your response, I am nervous when I join a new group, I

hope to be of support to all of you.

Right now I have 2 slighty bulging cervical disc's, trauma to the

thoracic area and the lumbar area. I gained possession of these from a

car accident in 1988. As I became more disabled with chronic

conditions, I became unable to exercise due to the inability to sweat,

so naturally I gained weight, anyone who has lower back prob's can

relate to this. I'd had 4 abnomial(sp?) surgeries which trashed

whatever muscles I had, I can't say I was all that physically

fit/active, which of course exacerbates the pain and symtoms. But I'm

very aware that it'll get worse as I get older. I was referred to a

spine institute specialist. Very nice and gentle Dr. 'to gentle' he

wrote in his report that he'd palpated my neck and I had no rash, I

had a turle neck on and he never touched me; plus I've had a skin rash

for over 30 yrs, as if that wasn't enough he took me to another exam

room to show me some xrays of an MRI, I found this amusing since I've

never done the MRI, I was unable to continue the test becuz a full

blown panic attack..............so this Dr said that the only reason

my back had such pain was due to my smoking cigarrette's. In making

every effort to be respectful to my PCP's college buddy, I asked him

what I should do? He was obviously slightly annoyed with my complaint.

I asked point blank 'should I give this Dr another to revise his exam

report? My PCP didn't answer and left the room............huh?

Thankyou for your inquiry, I am glad to be here and look forward to

sharing and discussing ideas, experiances, what works to help relieve

pain. Since I posted my greeting to the group I got up and used my

treadmill and make an effort everyday, I wear a back brace with an ice

pack. The diet is what it is becuz of all the conditions and meds I

actually wouldn't be able to eat anything, not even water, I just eat

what doesn't hurt as much.

So even that the members have posted their stories I'd like to hear

them and any advise on pain control will be greatly appreciated, Trena

>

> Hello Trena. Sounds like you have a lot to deal with. Do you know

what your specific spine concerns are? Have you had an x-ray? Most

chiropractors require you to have standard x-rays (full length from

side and front) for about $165 before they will even touch you, and

that's probably a basic way to start to know if anything obvious is

going on. You are not required to have an adjustment just for

visiting a chiropractor and getting x-rays done. Or you might

consider getting basic x-rays done somewhere else, but usually that

requires a doctor visit/counsultation, which would add to the cost.

The only benefit that I see in getting x-rays done at a chiropractor's

office is that they take them while you are standing up (weight

bearing) and that tends to show more accurately what is happening to

your spine. Most hospitals take them with you laying down and that

does not give a very accurate view, from a positioning standpoint.

>

> From what I've seen in the lay-on-this-and-it-will-fix-your-spine

gadgets, they usually aren't what you want to spend $ on. When

considering a " tool " that is claimed to help spine problems, look for

how long the product has been out on the market (that eliminates about

90% of the get-rich-quick gadgets) and for actual satisfied customers

(not paid commercial kind).

>

> Other problems you have that exacerbate your spine? I have those

too, including hip bursitis on one side and knee problems on the

other. Not fun! But it sure does help when some of the other

problems can be taken care of and provide progress in your overall

general health.

>

> Wow, 7 years going to the same doctor . . . I think my record was 5

and that was in my childhood. <G> Wouldn't hurt to get a different

opinion from somebody else and see what they have to say. Some

clinics will have a discount rate for your first visit - they are hard

to find but out there.

>

> Debbie Dahl

>

>

[Guest guest]

>

> Hello,

> I am new to this group and have been recently diagnosed with Hep

C. I

> just found out today that I had also at one time had Hep B, but my

body

> developed an imunity to this one. My question is can your body

also

> build an immunity to Hep C or once it shows the ALT test that you

have

> it, is that " IT " . Is there any way to tell how long you have had

it?

> I had normal liver tests in 2004-5 and decided to get a total

check up

> since I divorced my husband. This has hit me very hard. I have

had

> trouble sleeping and cry constantly. I had a boy friend that

decided he

> didn't want to deal with this. I didn't find out I had it until

after I

> left my husband, however with tons of reading looks like getting

this

> from having sex is very unusual. Any help regarding any of these

> questions is helpful. I also am very confused with the therapy.

I

> have heard nightmare stories about the antifuren. What kind of

success

> is there from Milk Thistle? Thanks,

>

Treatment for Hep C is different for everyone--- I am 23 been on

interferon for 5 months. Never missed a day of work, no thinning,

maybe just a little more moody then normal.

Do the reaserch yourself, know your body, Hep C is not the end of

the world for most. Others I know struggle daily and I consider

myself blessed.

Good Luck and welcome to the group

[Guest guest]

>

> Hello,

> I am new to this group and have been recently diagnosed with Hep

C. I

> just found out today that I had also at one time had Hep B, but my

body

> developed an imunity to this one. My question is can your body

also

> build an immunity to Hep C or once it shows the ALT test that you

have

> it, is that " IT " . Is there any way to tell how long you have had

it?

> I had normal liver tests in 2004-5 and decided to get a total

check up

> since I divorced my husband. This has hit me very hard. I have

had

> trouble sleeping and cry constantly. I had a boy friend that

decided he

> didn't want to deal with this. I didn't find out I had it until

after I

> left my husband, however with tons of reading looks like getting

this

> from having sex is very unusual. Any help regarding any of these

> questions is helpful. I also am very confused with the therapy.

I

> have heard nightmare stories about the antifuren. What kind of

success

> is there from Milk Thistle? Thanks,

>

Treatment for Hep C is different for everyone--- I am 23 been on

interferon for 5 months. Never missed a day of work, no thinning,

maybe just a little more moody then normal.

Do the reaserch yourself, know your body, Hep C is not the end of

the world for most. Others I know struggle daily and I consider

myself blessed.

Good Luck and welcome to the group

[Guest guest]

Well you came to the right place. Everyone HERE is soooo compassionate and

understands first hand how you feel and what you are dealing with. We hold one

another up and it helps to get by one day at a time. I suspect we all have

these down times and someone is always worse off than any of us but we totally

feel the ups and downs and logics of what this disease does to us inside and

out. The focus has to be on a better tomorrow or you will meltdown. When I

look at my life I am grateful and say I have it so good. My family like yours

is totally supportive and cares that I feel GOOD and feel HAPPY and NEVER FEEL

ALONE. So I feel guilty when I feel down and get moody. We are human and with

it comes the HUMAN elements to get by life sometimes grudgingly. Tomorrow will

be better and if you keep that inside your heart of hearts you can get strength.

We always know of someone worse off - if not the suffering Jesus Christ helps

me. I get a SPLINTER in

my finger and cry and can't imagine NAILS through my hands and feet. Why am I

whinning ????? BECAUSE I AM HUMAN and I am one of many who take life for

granted and then I snap out of it and say THANKS GOD !!!

Enjoy your day and stay strong - there's a new tomorrow.

Trust.

Hugs.

[ ] New to group

Hello all,

Was told I had rheumatoid arthritis back in the early 90's and dodged

the bullet without meds until 2 years ago when they finally had to put

me on predisone for a short while and than plaquenil..well stomach

issues and gallbladder removal and liver biopsy to find out that I have

Autoimmune hep---now back on predisone and on imuran and boy now the

flu, so my state of mind is at a low.

That is why I am here, to vent to people who know what I am going

through. I feel so sorry for my family, they are so good to me, they

don't need this. Just tired of being sick, stiff, no energy, and lack

of interest.

So turning to you for a little pick me up.

Thanks in advance.

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Welcome.

I have both vaccinations and I think it's the best thing you can do to protect

your liver.

I am happy your health is taken care of so quickly. This group will be good for

you. You learn alot from others expriences.

Keep coming back.

Hugs.

[ ] New to Group

Hello All Brave Ones,

I am new here. I am 42 and was just diagnosed with AIH. I am thankful

it was caught early (blood test for life insurance). Looking back I had

all the symptoms. My enzymes were not too terribly out of control. Doc

recommended just Imuran and no steriods. It seems to be working and I

am feeling much better. Blood test have been good for two months. I am

hoping this is as worse as it gets!

I have two small children and a wonderful husband. I work full time and

am also an artist. But, like many people, I have quilt about not being

able to do all the things I think I should or that I use to do. I am

trying to live each day in a beautiful way.

I do have a question. My doctor is recommending Hep A and Hep B

vaccines. Does anyone one have experience with why and any dangers

associated with getting these vaccines? I am trying to be very watchful

of everything that goes in me.

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

--- hello thank you for allowing me this opportunity to join i have

pbc and would like to email people with the simular disease,also any

information you can send me on pbc thank you & god bless all of you

jesuschristianlady

>

>

>

> [ ] New to Group

>

> Hello All Brave Ones,

> I am new here. I am 42 and was just diagnosed with AIH. I am

thankful

> it was caught early (blood test for life insurance). Looking back I

had

> all the symptoms. My enzymes were not too terribly out of control.

Doc

> recommended just Imuran and no steriods. It seems to be working and

I

> am feeling much better. test have been good for two months. I

am

> hoping this is as worse as it gets!

> I have two small children and a wonderful husband. I work full time

and

> am also an artist. But, like many people, I have quilt about not

being

> able to do all the things I think I should or that I use to do. I

am

> trying to live each day in a beautiful way.

> I do have a question. My doctor is recommending Hep A and Hep B

> vaccines. Does anyone one have experience with why and any dangers

> associated with getting these vaccines? I am trying to be very

watchful

> of everything that goes in me.

>

>

>

>

>

>

______________________________________________________________________

______________

> Never miss a thing. Make your home page.

> http://www./r/hs

>

>

[Guest guest]

>

> Hello, my name is Lori Cummins. I was diagnosed with Chronic Active

Autoimmune Hepatitis on July 29, 1996. Not before it was too late to

help me in any other way but a Liver transplant. I was transplanted

on 3~11~97 at the Mayo Clinic In Rochester, MN.

> I have been watching the group now for a couple of days trying to

get to know everyone a little before I jump in. Any questions you

have you can direct them to the group or feel free to E~mail me

directly at tlknj@... I read Barbara's post on the thrush. Nystatin

is what I have bben given for the thrush, I have had it 2 times since

transplant. It works very well. Hello everyone!!!

> Remember " No one should go throught his alone " TTFN

>

hello lori my name is becky i am 51 years old, i have been diagnosed

with primary billiary cirrhosis about 2 years ago ,i go to a very

good dr, in jackson tn .i have a husband and 3 children 2 which are

married 2 s, 1 boy, my son and oldest daughter are married and

have children i have 5 grandchildren and 2 which i claim but are not

my own so i guess that makes me having 7 gradchildren my youngest

daughter is 15 and still lives at home ,i am a member of a great

pentecostal church nearby my strength comes from my jesus my best

friend thank you becky

[Guest guest]

>

>

> I am in a totally new world when talking about liver disease. I'm

not

> certain if I'm in the right group, but after reading your posts I

know you

> can help me find the one I should be in. Right now I can't sit at

the

> computer very long because I'm recovering from surgery. I'll make

my story

> as short as possible, or really it's my husbands story.

>

> About a year ago my husband knew he was sick. He has never been to

drs. or

> needed to go. His right leg was very swollen. He went to a round

of

> specialists. One would tell him one thing & then refer him to the

next. He

> saw several drs and each one would refute what the other said. Out

of

> disgust, he quit going to all drs.

>

> This year he went to my general phy. He had a scan done on him.

At this

> time he had quit eating but was gaining weight. He was put into the

hospital

> and immediately learned he had cirrhosis of the liver and needed a

> transplant. My daughter has had complete care of him and I'm not

sure of all

> that transpired in the hosp. They drained 80 lbs of fluid from him

and said

> that he was malnourished. He was sent home on a salt free diet and

still

> doesn't want to eat. He was told he had to have a transplant.

Ironically,

> both of his doctors are on vacation until August 9. Any advice

could help me

> to help him.

>

> Janice in Ark

>

> hi janice i an new to the group also but this may help you i go to

a great doctor in jackson tn i have primary biliary cirrhosis was

first diagnosed 2 years ago i was shocked to find out this i had

never heard of this disease, reply if interested in info on dr at

jackson or just want to would like to hear from you concern and

prayers jesuschristianlady

>

> _________________________________________________________________

> Join the world's largest e-mail service with MSN Hotmail.

> http://www.hotmail.com

>

[Guest guest]

>

> hi there, i have a natrualpathic doctor. what kind of test can he do

to

> know if i have a candida problem?

> i am dealing with bladder issues (i think intersticial cystitis) &

have

> been eating mostly raw for breakfast & lunch & then a cooked supper.

> i would like to know if candida is exacerbating the bladder problem.

> i see the natrualpathic dr at the end of april & he mentioned that he

> may do a vaginal ph swab. is that for candida?

==>Hi Tami. Welcome to our group. When you joined you were sent

emails that all new members are required to read. One was " Candida

Basics by Bee " which explains why no candida tests are conclusive, and

it provides you with a test you can take yourself.

To become a fully functioning member you need to read and understand

the basis of this group. After you've read please get back to us with

questions and concerns and we will support and help you.

If you did not keep the articles please see my article " How to

Successfully Overcome Candida " found in our Group's Files (see the left-

hand menu) - it is in the 2nd Folder.

The best in health, Bee

[Guest guest]

Hello Grace - welcome and good luck and health to you in this eye opening

disease we have fallen into in this wonderful support group. As I read your

email I felt compelled to write just to say how amazed I get every single time I

read a new entry about how we all start out. We are overwhelmed and a bit

confused and the best part extremely open to suggestions and advice and well

wishers. It seems the tone for this whole site is of acknowledgment and

gratitude for the support we have been given and learn from. I never saw such

people with the same tone as we all seem to consistently posess. I can't put a

finger on it - - maybe it's overwhelming questions and struggles for answers to

exact-ness of what we are experiencing -maybe it's nothing more than being drawn

in to people just like ourselves if even for the short time we share our

stories. One thing I know for sure - this site was put here for a gifted

purpose and I feel so very grateful that I

found it and that I am a part of it and that I am not alone in this whole

scenario we all are going through at our own pace - our own experiences and our

own grief (and loss for what our bodies have become and we will go through or

have GONE through). When I read these posts for the day I never hesitate to

feel " connected " to each and every entry in some way. I really feel like if I

had to turn to any of the people in this site they would be my friend through

any burden - happiness - loss - growth - and mostly do whatever it took to

educate and help me through. I see it and I feel it and I thank you all for the

comrodarie I feel and share it in return. We are all from different parts of

this world and yet we are connected like we are all neighbors and friends and it

feels great. Nothing stays the same but I hope and pray this site never goes

away and we never forget our first entries and how it feels to have one another

here at this time in our

lives.

Thanks one and all.

Dee

[ ] new to group

I am going in for a liver biopsy tomorrow AM at a hosp here in Santa

Barbara, Calif. My Liver enzymes have been climbing higher and higher

over the last 6 years and are now between 600 - 700 - and my last

Mitochondrial AB Titer is high. They say my tests allude to Primary

Bilary Cirrohois = PBS. The other tests they did - ie: smooth Muscle

Titer and Ferriton are still negative. So we will see.

I have a Kinesiolologist who I am & will be continue to see along with

my Primary Care MD (Internist) & Gastroenterology MD Specialist, and

of course the Physician upstairs :-)

At first I was so scared - and then along with the help of my Higher

Power, the book I am reading called - A New Earth by Eckhart Tolle, and

a lot of loving friends who are praying for me - I am now standing in

the Center of Grace and Peace.

I am glad I found you, it will be good to have a support system of

people who understand.

Grace

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals./tc/blockbuster/text5.com

[Guest guest]

Grace,

For two months my liver enzymes kept climbing to 1300. Every test was

negative, including the smooth muscle. My liver biopsy was read by two

different labs without a dx. Finally I was sent to the Center for Liver

Disease in Pittsburgh, PA. The hepatologist there examined the biopsy

himself and said there were markers for AIH. I had 80 tubes of blood taken

in a two month period. The hardest part was trying to find out what was

wrong. Finally I was put on prednisone and imuran. My liver count in now

normal. It did take almost a year for me to feel good and have energy.

Our prayers are with you.

PA

_____

From: [mailto: ]

On Behalf Of amazing53

Sent: Tuesday, April 01, 2008 3:13 PM

Subject: [ ] new to group

I am going in for a liver biopsy tomorrow AM at a hosp here in Santa

Barbara, Calif. My Liver enzymes have been climbing higher and higher

over the last 6 years and are now between 600 - 700 - and my last

Mitochondrial AB Titer is high. They say my tests allude to Primary

Bilary Cirrohois = PBS. The other tests they did - ie: smooth Muscle

Titer and Ferriton are still negative. So we will see.

I have a Kinesiolologist who I am & will be continue to see along with

my Primary Care MD (Internist) & Gastroenterology MD Specialist, and

of course the Physician upstairs :-)

At first I was so scared - and then along with the help of my Higher

Power, the book I am reading called - A New Earth by Eckhart Tolle, and

a lot of loving friends who are praying for me - I am now standing in

the Center of Grace and Peace.

I am glad I found you, it will be good to have a support system of

people who understand.

Grace

[Guest guest]

Hello Grace,

I hope your liver biopsy went well. I found out last month that it

isn't as bad as my imagination led me to believe.

There's always an element of uncertainty about what our future holds

with PBC, AIH, or any other illness for that matter. Try and remember

that, no matter how your medical tests look today, they can improve.

Take your time to make choices that may affect your health. It's your

body and the decisions along the way are yours.

I found that the initial 'fear of the unknown' became less and less

over time and I realised that lifestyle and stress have a direct

impact on how well I am. Also, it's very important to keep yourself

informed.

I hope all goes well for you.

Regards

Sue

Australia

>

> I am going in for a liver biopsy tomorrow AM at a hosp here in

Santa

> Barbara, Calif. My Liver enzymes have been climbing higher and

higher

> over the last 6 years and are now between 600 - 700 - and my last

> Mitochondrial AB Titer is high. They say my tests allude to

Primary

> Bilary Cirrohois = PBS. The other tests they did - ie: smooth

Muscle

> Titer and Ferriton are still negative. So we will see.

>

> I have a Kinesiolologist who I am & will be continue to see along

with

> my Primary Care MD (Internist) & Gastroenterology MD Specialist,

and

> of course the Physician upstairs :-)

>

> At first I was so scared - and then along with the help of my

Higher

> Power, the book I am reading called - A New Earth by Eckhart Tolle,

and

> a lot of loving friends who are praying for me - I am now standing

in

> the Center of Grace and Peace.

>

> I am glad I found you, it will be good to have a support system of

> people who understand.

>

> Grace

>

[Guest guest]

Well Glenn,

Welcome to the Rebetrol rage boat lol. I started April 7th and twice already I

told my husband I think I would rather just die lol. But I am usually a whimp

always chose in my life what feels good instead of the right thing. So lets hang

on for the long haul together and cry if you have to hell scream I do lol. I am

not taking any antidepressants yet. I cry like crazy way to much and all I seem

to want is just to sleep. Today mother gives me the second Peg shot and oh I am

not looking forward to shaking all night and freezing. I just cant seem to get

warm enough after this and the night sweats suck. I do take ibuprofen before I

take this shot and usually every evening I have to because my temp goes up. I am

forcing my poor husband to make me eggplant with tahini to try to keep a little

healthy food in my tummy. He is so good to me I could not do this without him

and being able to vent here. The people at work nurses no less dont understand.

They think I have taken a leave of absense because I can not pass a drug screen

lol. I told them let me pee for any of you stupid people. I do have chemicals

in my body but not the illegal type nor any mind altering rx. I have been clean

for 5 years and I guess people are always going to be idiots lol. The hardest

part is the awesome worry I feel. I have to just get out of the house my husband

takes me for a drive (not to far lol cause the gas is to high) but we go just

get an 'icecreeze " as my little one calls it. My little one tells me I need to

have a h appy face. So I do try to put on the happy face for the babies even

though I think boy I must have really been a bad girl when I was out there using

lol to deserve all this. Seriously I am just kidding and know God does not work

that way. My mother even being so sweet to me never could really show she loved

me but she sure has helped with the babies and washed up all our clothes

yesterday cause she saw how dang tired I was. So I think for now I am good ask

me tomorrow after shot 2 lol.

New To Group

Hello Group , I have had 1ab Hep C for 25 years,I just Started, 3weeks

ago ,Pegasus Int.Ribivarin treatment ,my biopsy results were Scarring

1/4,Inflamation 3/4 ,Fat 3/4 ,super fatty liver,additionlly perscribed

ursodiol 500mg x 3 daily,I have already caused an infection in my

gums ,by routing around in my teeth with a screwdriver,no kidding,and

was subsequently perscribed Amoxicillin 500mg x 3 daily, I'm about to

bump my Celexa to 40mgfrom 20mg a day cause I can feel the weight of

all this starting to press down on me,oh ya I forgot the Ramapril 10mg

a day for my high blood presure,finally I am on methadone maitnence

195mg a day . I have suddenly realized that I'm in for a long haul and

have begun to search out support cause I think I'm going to need it !

b Glenn

[Guest guest]

>

Hi , Thanks for your response,I'm almost envious of

your response to your shots,My nurse happened to mention the worse

the reaction seems to be to the shots, the more effective the

treatment ,so now I get happy the sicker I am , Hows that for an

opptomist!A little support and understanding can go a long way so

thank you ,I have a feeling this won't be last time we speak. Till

then, hang in there !!

Glenn

> Well Glenn,

>

> Welcome to the Rebetrol rage boat lol. I started April 7th and

twice already I told my husband I think I would rather just die lol.

But I am usually a whimp always chose in my life what feels good

instead of the right thing. So lets hang on for the long haul

together and cry if you have to hell scream I do lol. I am not taking

any antidepressants yet. I cry like crazy way to much and all I seem

to want is just to sleep. Today mother gives me the second Peg shot

and oh I am not looking forward to shaking all night and freezing. I

just cant seem to get warm enough after this and the night sweats

suck. I do take ibuprofen before I take this shot and usually every

evening I have to because my temp goes up. I am forcing my poor

husband to make me eggplant with tahini to try to keep a little

healthy food in my tummy. He is so good to me I could not do this

without him and being able to vent here. The people at work nurses no

less dont understand. They think I have taken a leave of absense

because I can not pass a drug screen lol. I told them let me pee for

any of you stupid people. I do have chemicals in my body but not the

illegal type nor any mind altering rx. I have been clean for 5 years

and I guess people are always going to be idiots lol. The hardest

part is the awesome worry I feel. I have to just get out of the house

my husband takes me for a drive (not to far lol cause the gas is to

high) but we go just get an 'icecreeze " as my little one calls it. My

little one tells me I need to have a h appy face. So I do try to put

on the happy face for the babies even though I think boy I must have

really been a bad girl when I was out there using lol to deserve all

this. Seriously I am just kidding and know God does not work that

way. My mother even being so sweet to me never could really show she

loved me but she sure has helped with the babies and washed up all

our clothes yesterday cause she saw how dang tired I was. So I think

for now I am good ask me tomorrow after shot 2 lol.

>

> New To Group

>

>

> Hello Group , I have had 1ab Hep C for 25 years,I just Started,

3weeks

> ago ,Pegasus Int.Ribivarin treatment ,my biopsy results were

Scarring

> 1/4,Inflamation 3/4 ,Fat 3/4 ,super fatty liver,additionlly

perscribed

> ursodiol 500mg x 3 daily,I have already caused an infection in my

> gums ,by routing around in my teeth with a screwdriver,no

kidding,and

> was subsequently perscribed Amoxicillin 500mg x 3 daily, I'm

about to

> bump my Celexa to 40mgfrom 20mg a day cause I can feel the weight

of

> all this starting to press down on me,oh ya I forgot the Ramapril

10mg

> a day for my high blood presure,finally I am on methadone

maitnence

> 195mg a day . I have suddenly realized that I'm in for a long

haul and

> have begun to search out support cause I think I'm going to need

it !

> b Glenn

>

>

>

>

>

>

[Guest guest]

Well Glen,

I am I guess happy to report my temp is 103.6 my head is spliting open and I

cant leave the house far from the toilet. So I guess I got a good reaction to

the peg yesterday. This week was worse than last but I am crying a lot more too.

I think it is just the tiredness and the kids crying blah blah. I just started

crying with them lol. All I want to do is sleep. Yesterday or last night rather

I woke up with this overwhelming paranoia I could not lay down. I am getting

bruises all over my legs not sure why that is maybe cause my 3 year old jumps

all over me not sure. My husband tried to tell him mommy is sick but he wants me

to play with him so I play I dont want them to suffer because of this crappin

Hep C. I have had mom give me the shots but next week I have to go out of town

so I have to give it to myself. Not looking forward to having a needle in my

hand but I will do it. Well I better go my stomach hurts like hell. Have a good

one and keep that open mind.

New To Group

>

>

> Hello Group , I have had 1ab Hep C for 25 years,I just Started,

3weeks

> ago ,Pegasus Int.Ribivarin treatment ,my biopsy results were

Scarring

> 1/4,Inflamation 3/4 ,Fat 3/4 ,super fatty liver,additionlly

perscribed

> ursodiol 500mg x 3 daily,I have already caused an infection in my

> gums ,by routing around in my teeth with a screwdriver,no

kidding,and

> was subsequently perscribed Amoxicillin 500mg x 3 daily, I'm

about to

> bump my Celexa to 40mgfrom 20mg a day cause I can feel the weight

of

> all this starting to press down on me,oh ya I forgot the Ramapril

10mg

> a day for my high blood presure,finally I am on methadone

maitnence

> 195mg a day . I have suddenly realized that I'm in for a long

haul and

> have begun to search out support cause I think I'm going to need

it !

> b Glenn

>

>

>

>

>

>

[Guest guest]

,

Wow. Sounds sooo exciting. I can't wait until it's my turn. : )

Hang in there!

Remember, think negative. HCV negative that is. : )

New To Group

>

>

> Hello Group , I have had 1ab Hep C for 25 years,I just Started,

3weeks

> ago ,Pegasus Int.Ribivarin treatment ,my biopsy results were

Scarring

> 1/4,Inflamation 3/4 ,Fat 3/4 ,super fatty liver,additionlly

perscribed

> ursodiol 500mg x 3 daily,I have already caused an infection in my

> gums ,by routing around in my teeth with a screwdriver, no

kidding,and

> was subsequently perscribed Amoxicillin 500mg x 3 daily, I'm

about to

> bump my Celexa to 40mgfrom 20mg a day cause I can feel the weight

of

> all this starting to press down on me,oh ya I forgot the Ramapril

10mg

> a day for my high blood presure,finally I am on methadone

maitnence

> 195mg a day . I have suddenly realized that I'm in for a long

haul and

> have begun to search out support cause I think I'm going to need

it !

> b Glenn

>

>

>

>

>

>

[Guest guest]

Kendra, welcome to the group, but so sorry to hear about your dear son.

My son has juvenile ankylosing spondylitis, but there are many moms here who have children with systemic JRA (now known as JIA).

I know that they will chime in. Ask any questions, they are a very knowledgeable, and I might add, incredible and supportive group of people! and Rob 18 JAS New to group > Hi I'm Kendra. We where told recently that our 5 year old son > has > Systemic Jra. We have no clue how bad this could get for him. > Just > wanted to talk to other with children with JRA. > >

[Guest guest]

Hi Kendra,

My name is Diane and my daughter Maggie who is 10

was diagnosed recently with Systemic JIA. She has had

symptoms on and off since about age 8 but finally last

spring everything decided to flare up at once. Even

though this was terrible for her, blood transfusions,

kidney, liver, heart and lungs along with joint

swelling and rashes, she decided to throw them a curve

with Uveitis which is rare for Systemic kids but

apparently it can happen. This huge flare is what

helped her doctors to finally diagnose her with

Systemic.(still took one year from that time to

diagnose)

To us it was almost a relief to finally have an

answer to some of her health issues which some doctors

repeatedly told us were from her other health

conditions which we knew they were totally unrelated.

She continues to be on massive doses of steroids

even one year later. She also is on 25mg of

Methotrexate weekly, 200mgs of Celebrex daily and

51grams of IVIg every 4weeks.

Her Pediatric Rheumatologist is trying hard to add

Kineret now since her Systemic diagnosis, but she has

had other health issues due to an immunodeficiency

that keep preventing this from happening.

Like everyone else here seems to have going on, she

has good days and bad.

Last Monday she was diagnosed with Vasculitis after

a biopsy taken from a non-healing ulcer on her skin

(one of many). I am not sure what that all means,

other than another increase in her steroids at the

moment. Because of this they have decided to try

putting her in a Hyperbaric Oxygen Chamber for around

30 sessions at two hours a day to see if there is any

help in healing these so they can start on her next

med.

When Maggie has a flare up, it seems to make her

sick all over sometimes. Almost always it is at least

two big joints and sometimes EVERY joint in her toes

or fingers. The last three times her liver enzymes

went up as well. After an increase in steroids for a

few days, everythings settles back down most of the

time.

The MTX doesn't seem to do much for her flare ups,

but it has made it possible to go from steroid eye

drops every 4 hours to just one drop in each eye every

other day.

Through it all, she has come to accept the things

that she cannot change. Some things did have to be

modified.

She walks with Forearm crutches on good days and

uses a wheelchair on others. She plays " Challenger "

Baseball. She always has a smile.

She has home instruction and is three grade levels

ahead of her peers. She plays the violin and both

acoustic and electric guitar. What God has taken away,

he has given back in other area's. It is just a matter

of finding them it seems.

Maggie's diagnosis was a bittersweet one for our

family. I would guess finding the right combo of meds

will be a welcomed answered prayer for all of us.

For now though, it is one day at a time!

Not sure if this helps. I know there are a lot of

simular traits in this disease, but I also know there

are a lot of individuale ones. But so far this is

where we are with her care.

I hope this helps a little. I know when we first

came here we learned a lot from just reading. It is

such a comforting feeling to know that you are not

alone!

Diane and Maggie age 10 (OI,CP, Systemic JIA,

Uveitis)

--- kendrakrusmark <kendrakrusmark@...> wrote:

> Hi I'm Kendra. We where told recently that our 5

> year old son has

> Systemic Jra. We have no clue how bad this could get

> for him. Just

> wanted to talk to other with children with JRA.

>

>

Diane and Maggie age 10 (OI,CP,POLY JIA,UVEITIS)

________________________________________________________________________________\

____

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[Guest guest]

Hi Kendra, I am leslie and my daughter is 4 years old with systemic JRA. She had rashes, fever as the day progressed, swelling of her liver and spleen and limited joint involvement in her wrists when she was 9 months old and we spent about a year working on a diagnosis. She takes enbrel injections 2 times per week, thalamid nightly and arava in the morning. this combination has kept her symptoms pretty minimal, however her labs are not normal and they increase or add something every 2-3 months. She has been weaned off of prednisilone and methotrexate injections. What kind of questions did you have? Jana is pretty normal, although seems to catch every virus and infection that comes down the road. she is tired alot and still naps about 2 hours a day. I have noticed on this list that fatigue seems to be a pretty common symptom. we plan our day in spurts with time for resting or else she gets pretty

tearful. welcome to the group, sorry to hear that your son is dealing with JRA. and Jana 4 yo systemic JRAkendrakrusmark <kendrakrusmark@...> wrote: Hi I'm Kendra. We where told recently that our 5 year old son has Systemic Jra. We have no clue how bad this could get for him. Just wanted to talk to other with children with JRA.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

well 1st of all those lortabs are killing your liver.you can work on treatment i

did.i found out i had it with those symptoms as well.

 

Tim Parsons

knoxville,tn 37931

865-588-2465 x107 work

 

 

www.DrHepper.com

 

new to group

hi i have been reading emails for sometime now and have tried to get

info on how people deal with HepC .It really sucks because i have 3

kids and have to work to support my family. Always tired but i keep on

going ,dont have any idea how long until my liver explodes it feels

swollen and causes stomach and chest pain. I have back problems so i

take lortabs and feel ok until they wear off than im really out of

it.this is my first time to email to anyone so not sure who's getting

this .well i guess i'll find out soon enough.

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

well 1st of all those lortabs are killing your liver.you can work on treatment i

did.i found out i had it with those symptoms as well.

 

Tim Parsons

knoxville,tn 37931

865-588-2465 x107 work

 

 

www.DrHepper.com

 

new to group

hi i have been reading emails for sometime now and have tried to get

info on how people deal with HepC .It really sucks because i have 3

kids and have to work to support my family. Always tired but i keep on

going ,dont have any idea how long until my liver explodes it feels

swollen and causes stomach and chest pain. I have back problems so i

take lortabs and feel ok until they wear off than im really out of

it.this is my first time to email to anyone so not sure who's getting

this .well i guess i'll find out soon enough.

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

is, seems to me you need to see a doctor for a full work up. You don't

mention any medical care.

HCV can be very tiring and I'm sure it does suck trying to care for your

family when you're ill. Additionally, the pain meds are dragging you

down..I've been down that road.

Please see a doctor and get checked out if you haven't already done so. See

what genotype you are and what treatment they recommend. It may not be as

bad as you think and you may end up feeling a whole lot better in 6 to 12

months. I finished treatment in February and despite other medical issues,

the tiredness disappeared very quickly.

Hope you'll keep reading and take some positive steps to improve your health

for yourself and your family.

_____

From: Hepatitis C

[mailto:Hepatitis C ] On Behalf Of alexis0819

Sent: Thursday, April 24, 2008 11:01 PM

Hepatitis C

Subject: new to group

hi i have been reading emails for sometime now and have tried to get

info on how people deal with HepC .It really sucks because i have 3

kids and have to work to support my family. Always tired but i keep on

going ,dont have any idea how long until my liver explodes it feels

swollen and causes stomach and chest pain. I have back problems so i

take lortabs and feel ok until they wear off than im really out of

it.this is my first time to email to anyone so not sure who's getting

this .well i guess i'll find out soon enough.