Re: Jackie . . . tell me more.

[Guest guest]

You CAN find Siliphos bound MT at the HFS or buy it online,, Maximum Milk

Thistle and Unicity's Liver Essentials are two that I know of online to buy but

I know you can find it at the HFS...I'd be careful of any 'tincture' of MT or

anything like that cuz they usually have some kind of alcohol in them and that

is really bad for your liver...

Its really important to help your liver handle all of this and MT is a good

thing to take.

Tell your hubby that YOU ARE fighting for YOUR LIFE,, and to GET OVER IT!... I

am sorry, I just dont have alot of sympathy for spouses that are not

supportive,, Perhaps you should give him ONE shot of Interferon and see just HOW

he likes it and just how fast he feels like doing anything...sheesh,,,,, Stage 2

is moderate damage to your liver, they grade it from 0-4 with 4 being cirrhotic

and bad, Geno 1 anything is harder to treat, and thats what I had but it seems

more of us type 1 ARE reaching SVR with the pegylated drugs.

The nausea is normal and many of us have that on tx,, its just part of it,, Im

sorry, SOME ppl find some relieve with ginger snaps or gingerale or ginger

candies.. they are supposed to be settling on the stomach.

You sound like me before tx with a type A personality,, always doing everything

and doing it the best, etc, That will have to change ,, You need to let that go

and start working on being a type B,, or less stressed person... Your liver will

thank you for it.. just realize that some things you cannot change and just

learn to go more with the flow.. you will feel better doing that too, it will

take a huge weight off your shoulder when you realize and accept that you cannot

CHANGE the world nor can you solve all the problems.. its hard, but the sooner

you understand that,, the better...

I found that this disease has been a blessing in many ways, I have learned to

re-evaluate just what is important in this life,, and I have met some wonderful

friends through these bb's. Remember when God closes a door, there is ALWAYS a

window,, so look for the window and open it to new possibilities!

God Bless ,

jax

Bnhoffer2@... wrote:

My husband did not really now how to be supportive and so sort of shut down. And

he sorta followed me around during the treatment always wondering " when I'd feel

better so I can go back to work. " I guess at the heart of him was just a scared

boy just wanting all the bad to disappear. Unfortunately that left me with no

help (six kids) and a constant nagging guilt that I was the cause of all our

financial woes-he never tried to deny that one.

We're working on things with a counselor.

Back to the curse that is chronic Hep:

I've often wondered what is good Milk Thistle. The only local source is an

organic coop, they carry a liquid milk thistle sort of like a homeopathic

remedy. How can I tell if that's good, or where can I find the type you

described " siliphos bound? "

I did have a biopsy at the Mayo clinic in Jan 03; they said I was the liver

inflammation was stage II. I'm not positive what that means, from what I've read

there are many inconsistencies in the grading scales used.

It didn't seem good anyway. I have genotype 1, I thinks it's 1a but I'd have to

dig into my records. Mayo clinic said it was the hardest one to get rid of.

I, too, was " super mom. " As an adult parent going to college I was routinely on

the Dean's list, even as I was caring for seven kids under the age of 10. That

motivation continued and I was definitely running the household here, working

full time, being everywhere my kids needed me and going to school one evening a

week (with a 4.0 gpa) to obtain a Master's in Education. I started to get

mysteriously sick, but finished the coursework and started the six month process

of writing my thesis in order to finish and receive the degree.

I never wrote it, about six months after suffering, sometimes profound, with an

unknown illness I was diagnosed with HepC and very quickly began Interferon

treatment. I have yet to catch a glimpse of the person I was before Hepatitis.

During and since the interferon I became " stupid. " I have trouble thinking any

complex things, I forget most of what try to learn almost immediately. My speech

is actually slower and occasionally I struggle even getting words out and

sometimes slur the words. I have a horrible time remembering the " right " word.

It seems minor I guess, but it is difficult to think the way I used to and I

teach high school kids and have felt hopelessly inept this past year.

I am very interested in a routine of supplements and diet that could be

beneficial. I've searched a lot on the web but sometimes it can be hard to sort

fact from fiction-as well as bald faced self promotion.

And I am really interested in hearing that I'm not the only one suffering

" silently " with these not so silent symptoms.

A new potential problem has me wondering too. If someone could please advise I'd

be grateful:

Last week I noticed I was getting carsick, to the point of losing my lunch. I've

experienced nausea before-especially during the interferon. By last Friday, and

then Saturday I could hardly be in the car longer than a few minutes and I was

nauseous here and there at home. Monday I had an appt with my GP and he palpated

my abdomen, when he did the right, under the ribcage I almost jumped off the

table! I know that's where the liver is so questioned him. He asked if I'd been

experiencing any nausea. I told him about the last week of it and that was about

all it was addressed. I guess I'd say he didn't seem concerned. Earlier today I

started noticing pain under my right ribcage. It has gotten progessively worse

through the day-to the point of serious discomfort. I can't sit very long in one

position. About an hour ago I said the hell with it and took some pain meds. Now

it's dull but still there.

Should I be concerned? What should/could I do about it? Like I said before I

live in a sort of unsophisticated medical community where anything complex is

referred to the city and hour or so away. I've gotten so many blank looks,

dumbfounded reactions and outright condescending dismissal from the clinic here

I'm afraid to try talking to someone for fear of being humiliated or ignored.

Rjohnson

Re: Okay, here goes . . .

well this is the 2nd attempt to write this, puter went ziipttt,, darn it,,

well first off, welcome, Im glad you found us altho Im sorry you have this

disease!

Docs dont associate a lot of the symptoms you have with hep c,, and they ARE

WRONG! They call this a silent disease but thats cuz THEY dont feel what we

do...

This disease will affect every part of your life and it will not make a

marriage easier, but you can do this ,, Im sorry you were unable to tolerate tx,

there are a lot of others in the same boat, this treatment is not easy.. I was

able to do it only because of the support I had and I was able to spend an

entire year in bed ,, my hubby was so supportive and took me to every doc appt,

and took over absolutely EVERYTHING! had I been married to my former spouse,

there would have been no way I could have finished tx... but dont be hard on

yourself..

Did you have a biopsy? How much damage do you have? stage? what genotype

are you?

There are lots of things you can do to help maintain your health as well

too...

I am becomming an ND with a bachelors in nutrition so that being said,, I also

have to say that there is NO natural treatment that can cure this disease at

this point.. so dont get sucked into any schemes, there ARE however things you

can do and supplements you can take to help your liver maintain as long as

possible,, like Milk Thistle,, siliphos bound milk thistle is the best,

schizzandra is good, green tea is good.. but none of this will cure this

disease..

anyway, welcome,, and please feel free to email me personally if I can help

you in any way. Just remember that I am not a medical doc, but I do have 15

years in emergency medicine as a 911 paramedic and anything I say to you should

be run by your doc before you try anything,,

ok thats my disclaimer, lol,, welcome to the group,,

jackie

Jackie on <redjaxjm@...> wrote:

Im going to answer this but I want to think about it for a min,,, God Bless

you hon, you are not going insane, altho it might feel that way,,

Bnhoffer2@... wrote:I joined this list with the express purpose of getting

some answers and, well much as I'd prefer " lurking " I know my questions won't be

answered if I don't ask them!

Almost three years ago I was diagnosed with Hepatitis C, and that after almost

a year of being sick and not knowing why. I've heard of people being sick with

obscure things and having doctors suggest it was " all in their head, " I never

dreamed it would happen to me . . . it did. That's another story. However, that

early undiagnosis and then bungled diagnosis along with the " all in your head

attitude " seems to have set the tone for my past three years experience with

Hepatitis.

I've done interferon/rebetrol, almost the whole course. I quit month 10,

another story. It wasn't working anyway and my experience with interferon was

horrific, I'm still not sure if it is that medication or the disease itself that

has so radically changed my life.

It has been over a year since I ended the interferon so now I assume I'm

dealing with Hepatitis itself. I really want to know if others have similar

problems or if it's just me.

My biggest problem is fatigue, lack of enthuiasm-depression. It has been

profound during the last year.

Another debilitating issue is aches and pains. Sometimes it's my hands, my

chest, almost every day my back/spine just aches and aches.

The interferon damaged my thyroid-first it was overactive, then

underactive-for a while it didn't appear to be working at all-those days were

tough. Now the thyroid test lean towards the normal range, subsequently the

doctors tell me my thyroid is just fine- " you are probably just depressed. " While

that may be true, the message was very condescending.

I know that I lost most of my strength and body condition through the whole

ordeal-now it feels like a vicious cycle where I don't have the drive to get

back in shape-consequently a feel like a physical sloth and then I ache and just

feel worse and so on . . . I end up hating myself.

Am I a physical mess? or a psychological mess? I'm not sure whether I should

go to the doctor or the shrink.

Things are sort of a mess: I'm married (second marriage) with a blended

family. I feel like my husband has bungled quite a bit through this and while

I'm trying so hard to let it go and not hold it against him I find I have so

much resentment, and I feel very alone with this problem. I have six children

(two step) all of whom are teenagers. I've tried hard not to complain and burden

them and while it's true they don't see me as " sick " necessarily I feel like I

can't confide in them now that I've set the tone that my being sick is not going

to interfere with their adolescence.

I live in a semi rural area, about an hour or so from a " metro " area. The

clinic here has really done more harm then good. From the initial diagnosis I

have experienced dismissal and lack of knowledge about Hepatitis to total

apathy. I finally switched doctors this spring and I think I really got a good

one-this week we TALKED for at least 25 minutes, he was intelligent and

respectful and showed some sincere desire to try and make things better. Now if

my mind can just forget about three years of poor treatment and ignorant

attitudes.

Okay, that's enough about me, I realize that I could go on and on. I guess the

main point here is that I know with my " head " that mistakes were made and

ignorance about Hepatitis is very real-I should be able to let that go . . . but

I haven't I feel condemned and broken and quite ready to go live alone with

cats.

I just want to know if it's me.

[Guest guest]

You are not the only one with these side effects

I am always losing train of though

I stumble over my words I slur them, and I stutter

i almost cried at Jack In The Box today

the cashier asked me if I wanted a small medium or large drink with my combo

meal

I could not comprehend that. My husband and her explained again

I had no clue It was sad. Then I forgot what I was saying right after that. I

had to fight back tears

All three of my drs want me on multiple vitamins without iron

This treatment is very hard at times

Messes with your mind badly

hope things get better for

you

Annita

Bnhoffer2@... wrote:

My husband did not really now how to be supportive and so sort of shut down. And

he sorta followed me around during the treatment always wondering " when I'd feel

better so I can go back to work. " I guess at the heart of him was just a scared

boy just wanting all the bad to disappear. Unfortunately that left me with no

help (six kids) and a constant nagging guilt that I was the cause of all our

financial woes-he never tried to deny that one.

We're working on things with a counselor.

Back to the curse that is chronic Hep:

I've often wondered what is good Milk Thistle. The only local source is an

organic coop, they carry a liquid milk thistle sort of like a homeopathic

remedy. How can I tell if that's good, or where can I find the type you

described " siliphos bound? "

I did have a biopsy at the Mayo clinic in Jan 03; they said I was the liver

inflammation was stage II. I'm not positive what that means, from what I've read

there are many inconsistencies in the grading scales used.

It didn't seem good anyway. I have genotype 1, I thinks it's 1a but I'd have to

dig into my records. Mayo clinic said it was the hardest one to get rid of.

I, too, was " super mom. " As an adult parent going to college I was routinely on

the Dean's list, even as I was caring for seven kids under the age of 10. That

motivation continued and I was definitely running the household here, working

full time, being everywhere my kids needed me and going to school one evening a

week (with a 4.0 gpa) to obtain a Master's in Education. I started to get

mysteriously sick, but finished the coursework and started the six month process

of writing my thesis in order to finish and receive the degree.

I never wrote it, about six months after suffering, sometimes profound, with an

unknown illness I was diagnosed with HepC and very quickly began Interferon

treatment. I have yet to catch a glimpse of the person I was before Hepatitis.

During and since the interferon I became " stupid. " I have trouble thinking any

complex things, I forget most of what try to learn almost immediately. My speech

is actually slower and occasionally I struggle even getting words out and

sometimes slur the words. I have a horrible time remembering the " right " word.

It seems minor I guess, but it is difficult to think the way I used to and I

teach high school kids and have felt hopelessly inept this past year.

I am very interested in a routine of supplements and diet that could be

beneficial. I've searched a lot on the web but sometimes it can be hard to sort

fact from fiction-as well as bald faced self promotion.

And I am really interested in hearing that I'm not the only one suffering

" silently " with these not so silent symptoms.

A new potential problem has me wondering too. If someone could please advise I'd

be grateful:

Last week I noticed I was getting carsick, to the point of losing my lunch. I've

experienced nausea before-especially during the interferon. By last Friday, and

then Saturday I could hardly be in the car longer than a few minutes and I was

nauseous here and there at home. Monday I had an appt with my GP and he palpated

my abdomen, when he did the right, under the ribcage I almost jumped off the

table! I know that's where the liver is so questioned him. He asked if I'd been

experiencing any nausea. I told him about the last week of it and that was about

all it was addressed. I guess I'd say he didn't seem concerned. Earlier today I

started noticing pain under my right ribcage. It has gotten progessively worse

through the day-to the point of serious discomfort. I can't sit very long in one

position. About an hour ago I said the hell with it and took some pain meds. Now

it's dull but still there.

Should I be concerned? What should/could I do about it? Like I said before I

live in a sort of unsophisticated medical community where anything complex is

referred to the city and hour or so away. I've gotten so many blank looks,

dumbfounded reactions and outright condescending dismissal from the clinic here

I'm afraid to try talking to someone for fear of being humiliated or ignored.

Rjohnson

Re: Okay, here goes . . .

well this is the 2nd attempt to write this, puter went ziipttt,, darn it,,

well first off, welcome, Im glad you found us altho Im sorry you have this

disease!

Docs dont associate a lot of the symptoms you have with hep c,, and they ARE

WRONG! They call this a silent disease but thats cuz THEY dont feel what we

do...

This disease will affect every part of your life and it will not make a

marriage easier, but you can do this ,, Im sorry you were unable to tolerate tx,

there are a lot of others in the same boat, this treatment is not easy.. I was

able to do it only because of the support I had and I was able to spend an

entire year in bed ,, my hubby was so supportive and took me to every doc appt,

and took over absolutely EVERYTHING! had I been married to my former spouse,

there would have been no way I could have finished tx... but dont be hard on

yourself..

Did you have a biopsy? How much damage do you have? stage? what genotype

are you?

There are lots of things you can do to help maintain your health as well

too...

I am becomming an ND with a bachelors in nutrition so that being said,, I also

have to say that there is NO natural treatment that can cure this disease at

this point.. so dont get sucked into any schemes, there ARE however things you

can do and supplements you can take to help your liver maintain as long as

possible,, like Milk Thistle,, siliphos bound milk thistle is the best,

schizzandra is good, green tea is good.. but none of this will cure this

disease..

anyway, welcome,, and please feel free to email me personally if I can help

you in any way. Just remember that I am not a medical doc, but I do have 15

years in emergency medicine as a 911 paramedic and anything I say to you should

be run by your doc before you try anything,,

ok thats my disclaimer, lol,, welcome to the group,,

jackie

Jackie on <redjaxjm@...> wrote:

Im going to answer this but I want to think about it for a min,,, God Bless

you hon, you are not going insane, altho it might feel that way,,

Bnhoffer2@... wrote:I joined this list with the express purpose of getting

some answers and, well much as I'd prefer " lurking " I know my questions won't be

answered if I don't ask them!

Almost three years ago I was diagnosed with Hepatitis C, and that after almost

a year of being sick and not knowing why. I've heard of people being sick with

obscure things and having doctors suggest it was " all in their head, " I never

dreamed it would happen to me . . . it did. That's another story. However, that

early undiagnosis and then bungled diagnosis along with the " all in your head

attitude " seems to have set the tone for my past three years experience with

Hepatitis.

I've done interferon/rebetrol, almost the whole course. I quit month 10,

another story. It wasn't working anyway and my experience with interferon was

horrific, I'm still not sure if it is that medication or the disease itself that

has so radically changed my life.

It has been over a year since I ended the interferon so now I assume I'm

dealing with Hepatitis itself. I really want to know if others have similar

problems or if it's just me.

My biggest problem is fatigue, lack of enthuiasm-depression. It has been

profound during the last year.

Another debilitating issue is aches and pains. Sometimes it's my hands, my

chest, almost every day my back/spine just aches and aches.

The interferon damaged my thyroid-first it was overactive, then

underactive-for a while it didn't appear to be working at all-those days were

tough. Now the thyroid test lean towards the normal range, subsequently the

doctors tell me my thyroid is just fine- " you are probably just depressed. " While

that may be true, the message was very condescending.

I know that I lost most of my strength and body condition through the whole

ordeal-now it feels like a vicious cycle where I don't have the drive to get

back in shape-consequently a feel like a physical sloth and then I ache and just

feel worse and so on . . . I end up hating myself.

Am I a physical mess? or a psychological mess? I'm not sure whether I should

go to the doctor or the shrink.

Things are sort of a mess: I'm married (second marriage) with a blended

family. I feel like my husband has bungled quite a bit through this and while

I'm trying so hard to let it go and not hold it against him I find I have so

much resentment, and I feel very alone with this problem. I have six children

(two step) all of whom are teenagers. I've tried hard not to complain and burden

them and while it's true they don't see me as " sick " necessarily I feel like I

can't confide in them now that I've set the tone that my being sick is not going

to interfere with their adolescence.

I live in a semi rural area, about an hour or so from a " metro " area. The

clinic here has really done more harm then good. From the initial diagnosis I

have experienced dismissal and lack of knowledge about Hepatitis to total

apathy. I finally switched doctors this spring and I think I really got a good

one-this week we TALKED for at least 25 minutes, he was intelligent and

respectful and showed some sincere desire to try and make things better. Now if

my mind can just forget about three years of poor treatment and ignorant

attitudes.

Okay, that's enough about me, I realize that I could go on and on. I guess the

main point here is that I know with my " head " that mistakes were made and

ignorance about Hepatitis is very real-I should be able to let that go . . . but

I haven't I feel condemned and broken and quite ready to go live alone with

cats.

I just want to know if it's me.

[Guest guest]

Re: Car sickness.

When my middle son was just a baby, he began to suffer from motion sickness (it

has to do with the middle ear somehow). A wise old friend told me to go to a

car-care store and buy a length of rubber strapping. You affix it to the

underside of the back bumper and it hangs just long enough to touch the ground.

Now I don't know if there is any medical basis for it or whether it's just an

old-wives tale but it somehow grounds the car and we had no more car sickness

after that. It was an inexpensive fix and worked for us.

Love

anne

A new potential problem has me wondering too. If someone could please advise I'd

be grateful:

Last week I noticed I was getting carsick, to the point of losing my lunch. I've

experienced nausea before-especially during the interferon. By last Friday, and

then Saturday I could hardly be in the car longer than a few minutes and I was

nauseous here and there at home.

[Guest guest]

WOW anne,,,

That is one strange answer but hey if it works,, it works,, I havent ever heard

of that before, but just maybe what happened, and this is only my opinion, so no

one jump on me here,, lol,, maybe becasue he did get car sick and so every time

you got in the car, you were expecting him to get car sick, it made YOU on edge

and babys are like little sponges and they soak up our emotions,, and maybe your

son was feeling your stress about whether or not he was gonna get car sick or

not and that made him get sick, and so when you attached the hose to the bumper,

you expected it to work and so you were not putting out stress and so the baby

relaxed... Hell, I dont know, just a guess, but whatever, it worked and thats

what counts,, its sad that some docs can see that just because they cannot

explain something that doesnt make it not worthy ,,, Im glad that worked and I

will add that to my info for car sickness,,

hugs maryanne, and thanks for sharing that one,

love

jax

anne <kanga2@...> wrote:

Re: Car sickness.

When my middle son was just a baby, he began to suffer from motion sickness (it

has to do with the middle ear somehow). A wise old friend told me to go to a

car-care store and buy a length of rubber strapping. You affix it to the

underside of the back bumper and it hangs just long enough to touch the ground.

Now I don't know if there is any medical basis for it or whether it's just an

old-wives tale but it somehow grounds the car and we had no more car sickness

after that. It was an inexpensive fix and worked for us.

Love

anne

A new potential problem has me wondering too. If someone could please advise I'd

be grateful:

Last week I noticed I was getting carsick, to the point of losing my lunch. I've

experienced nausea before-especially during the interferon. By last Friday, and

then Saturday I could hardly be in the car longer than a few minutes and I was

nauseous here and there at home.

[Guest guest]

WOW anne,,,

That is one strange answer but hey if it works,, it works,, I havent ever heard

of that before, but just maybe what happened, and this is only my opinion, so no

one jump on me here,, lol,, maybe becasue he did get car sick and so every time

you got in the car, you were expecting him to get car sick, it made YOU on edge

and babys are like little sponges and they soak up our emotions,, and maybe your

son was feeling your stress about whether or not he was gonna get car sick or

not and that made him get sick, and so when you attached the hose to the bumper,

you expected it to work and so you were not putting out stress and so the baby

relaxed... Hell, I dont know, just a guess, but whatever, it worked and thats

what counts,, its sad that some docs can see that just because they cannot

explain something that doesnt make it not worthy ,,, Im glad that worked and I

will add that to my info for car sickness,,

hugs maryanne, and thanks for sharing that one,

love

jax

anne <kanga2@...> wrote:

Re: Car sickness.

When my middle son was just a baby, he began to suffer from motion sickness (it

has to do with the middle ear somehow). A wise old friend told me to go to a

car-care store and buy a length of rubber strapping. You affix it to the

underside of the back bumper and it hangs just long enough to touch the ground.

Now I don't know if there is any medical basis for it or whether it's just an

old-wives tale but it somehow grounds the car and we had no more car sickness

after that. It was an inexpensive fix and worked for us.

Love

anne

A new potential problem has me wondering too. If someone could please advise I'd

be grateful:

Last week I noticed I was getting carsick, to the point of losing my lunch. I've

experienced nausea before-especially during the interferon. By last Friday, and

then Saturday I could hardly be in the car longer than a few minutes and I was

nauseous here and there at home.

[Guest guest]

No problem Jackie,

Like you said if it works it works and it worked for us. It was sooooo nice not

having to constantly clean up baby sick let me tell ya! <grin>

Love

anne

Re: Jackie . . . tell me more.

WOW anne,,,

That is one strange answer but hey if it works,, it works,, I havent ever

heard of that before, but just maybe what happened, and this is only my opinion,

so no one jump on me here,, lol,, maybe becasue he did get car sick and so every

time you got in the car, you were expecting him to get car sick, it made YOU on

edge and babys are like little sponges and they soak up our emotions,, and maybe

your son was feeling your stress about whether or not he was gonna get car sick

or not and that made him get sick, and so when you attached the hose to the

bumper, you expected it to work and so you were not putting out stress and so

the baby relaxed... Hell, I dont know, just a guess, but whatever, it worked and

thats what counts,, its sad that some docs can see that just because they cannot

explain something that doesnt make it not worthy ,,, Im glad that worked and I

will add that to my info for car sickness,,

hugs maryanne, and thanks for sharing that one,

love

jax

anne <kanga2@...> wrote:

Re: Car sickness.

When my middle son was just a baby, he began to suffer from motion sickness

(it has to do with the middle ear somehow). A wise old friend told me to go to

a car-care store and buy a length of rubber strapping. You affix it to the

underside of the back bumper and it hangs just long enough to touch the ground.

Now I don't know if there is any medical basis for it or whether it's just an

old-wives tale but it somehow grounds the car and we had no more car sickness

after that. It was an inexpensive fix and worked for us.

Love

anne

A new potential problem has me wondering too. If someone could please advise

I'd be grateful:

Last week I noticed I was getting carsick, to the point of losing my lunch.

I've experienced nausea before-especially during the interferon. By last Friday,

and then Saturday I could hardly be in the car longer than a few minutes and I

was nauseous here and there at home.

[Guest guest]

Hmmmmmmmmmmmmmmmmm(heavy sigh). I realize how hungry I am for support from

others going through this. I can't wait to get a chance to check messages and

I'm reading things over and over, sort of like I can't believe it's true that

there are others and I'm not alone. Whether it's me or it's really happening I

can't say, but I have felt very avoided at the church we were going to, I felt

like I didn't have a " politically correct " disease and I very quickly stopped

sharing. Especially after the fifth or sixth person first response was, (in a

loud voice) " Oh wow, how'd you get THAT? " At that time I also noticed that no

one asked cancer victims or other debilitating disease victims that question. I

took the hint, I don't really socialize any more and I never, ever tell people

what I'm sick with.

Jax, what is " HFS? " . . . is it Health Food store? And, I finished the

interferon treatment about 13 months or so ago. The symptoms I'm experiencing

must be the Hepatitis, or . . . could I still be suffering some after affects

from the tx?

Another question for all: Is there any definitive answers on what the progress

will be? That is, will I continue to get sicker and have my liver fail? How long

is the average progression? All the Mayo clinic told me was a few vague remarks

about susceptibility to liver cancer. Granted I had to leave Mayo 3/4 of the way

into tx-my insurance changed and I would have had to pay up to 60% out of

pocket.

Re: Okay, here goes . . .

well this is the 2nd attempt to write this, puter went ziipttt,, darn it,,

well first off, welcome, Im glad you found us altho Im sorry you have this

disease!

Docs dont associate a lot of the symptoms you have with hep c,, and they ARE

WRONG! They call this a silent disease but thats cuz THEY dont feel what we

do...

This disease will affect every part of your life and it will not make a

marriage easier, but you can do this ,, Im sorry you were unable to tolerate tx,

there are a lot of others in the same boat, this treatment is not easy.. I was

able to do it only because of the support I had and I was able to spend an

entire year in bed ,, my hubby was so supportive and took me to every doc appt,

and took over absolutely EVERYTHING! had I been married to my former spouse,

there would have been no way I could have finished tx... but dont be hard on

yourself..

Did you have a biopsy? How much damage do you have? stage? what genotype

are you?

There are lots of things you can do to help maintain your health as well

too...

I am becomming an ND with a bachelors in nutrition so that being said,, I

also have to say that there is NO natural treatment that can cure this disease

at this point.. so dont get sucked into any schemes, there ARE however things

you can do and supplements you can take to help your liver maintain as long as

possible,, like Milk Thistle,, siliphos bound milk thistle is the best,

schizzandra is good, green tea is good.. but none of this will cure this

disease..

anyway, welcome,, and please feel free to email me personally if I can help

you in any way. Just remember that I am not a medical doc, but I do have 15

years in emergency medicine as a 911 paramedic and anything I say to you should

be run by your doc before you try anything,,

ok thats my disclaimer, lol,, welcome to the group,,

jackie

Jackie on <redjaxjm@...> wrote:

Im going to answer this but I want to think about it for a min,,, God Bless

you hon, you are not going insane, altho it might feel that way,,

Bnhoffer2@... wrote:I joined this list with the express purpose of

getting some answers and, well much as I'd prefer " lurking " I know my questions

won't be answered if I don't ask them!

Almost three years ago I was diagnosed with Hepatitis C, and that after

almost a year of being sick and not knowing why. I've heard of people being sick

with obscure things and having doctors suggest it was " all in their head, " I

never dreamed it would happen to me . . . it did. That's another story. However,

that early undiagnosis and then bungled diagnosis along with the " all in your

head attitude " seems to have set the tone for my past three years experience

with Hepatitis.

I've done interferon/rebetrol, almost the whole course. I quit month 10,

another story. It wasn't working anyway and my experience with interferon was

horrific, I'm still not sure if it is that medication or the disease itself that

has so radically changed my life.

It has been over a year since I ended the interferon so now I assume I'm

dealing with Hepatitis itself. I really want to know if others have similar

problems or if it's just me.

My biggest problem is fatigue, lack of enthuiasm-depression. It has been

profound during the last year.

Another debilitating issue is aches and pains. Sometimes it's my hands, my

chest, almost every day my back/spine just aches and aches.

The interferon damaged my thyroid-first it was overactive, then

underactive-for a while it didn't appear to be working at all-those days were

tough. Now the thyroid test lean towards the normal range, subsequently the

doctors tell me my thyroid is just fine- " you are probably just depressed. " While

that may be true, the message was very condescending.

I know that I lost most of my strength and body condition through the whole

ordeal-now it feels like a vicious cycle where I don't have the drive to get

back in shape-consequently a feel like a physical sloth and then I ache and just

feel worse and so on . . . I end up hating myself.

Am I a physical mess? or a psychological mess? I'm not sure whether I should

go to the doctor or the shrink.

Things are sort of a mess: I'm married (second marriage) with a blended

family. I feel like my husband has bungled quite a bit through this and while

I'm trying so hard to let it go and not hold it against him I find I have so

much resentment, and I feel very alone with this problem. I have six children

(two step) all of whom are teenagers. I've tried hard not to complain and burden

them and while it's true they don't see me as " sick " necessarily I feel like I

can't confide in them now that I've set the tone that my being sick is not going

to interfere with their adolescence.

I live in a semi rural area, about an hour or so from a " metro " area. The

clinic here has really done more harm then good. From the initial diagnosis I

have experienced dismissal and lack of knowledge about Hepatitis to total

apathy. I finally switched doctors this spring and I think I really got a good

one-this week we TALKED for at least 25 minutes, he was intelligent and

respectful and showed some sincere desire to try and make things better. Now if

my mind can just forget about three years of poor treatment and ignorant

attitudes.

Okay, that's enough about me, I realize that I could go on and on. I guess

the main point here is that I know with my " head " that mistakes were made and

ignorance about Hepatitis is very real-I should be able to let that go . . . but

I haven't I feel condemned and broken and quite ready to go live alone with

cats.

I just want to know if it's me.

[Guest guest]

Yep, its Health food store.

You know you will feel better when you do realize that there are 4 mil of us out

there and you are NOT alone!!! We are here and can help you for sure,, or at

least give you comfort!

There are no definitive answers to how this disease progresses.. but I can tell

you its usually in decades ( 10 years) or longer, not in months or years.. IF

you take good care of yourself, you can give your liver a chance to maintain..

LEARN ALL you can about hep, knowledge is power and it will help you to know

how to proceed.

There is not way to make excuse for others behavior other than to say they are

ignorant, thats all one can say to that..

stay in touch with me k

jax

Bnhoffer2@... wrote:

Hmmmmmmmmmmmmmmmmm(heavy sigh). I realize how hungry I am for support from

others going through this. I can't wait to get a chance to check messages and

I'm reading things over and over, sort of like I can't believe it's true that

there are others and I'm not alone. Whether it's me or it's really happening I

can't say, but I have felt very avoided at the church we were going to, I felt

like I didn't have a " politically correct " disease and I very quickly stopped

sharing. Especially after the fifth or sixth person first response was, (in a

loud voice) " Oh wow, how'd you get THAT? " At that time I also noticed that no

one asked cancer victims or other debilitating disease victims that question. I

took the hint, I don't really socialize any more and I never, ever tell people

what I'm sick with.

Jax, what is " HFS? " . . . is it Health Food store? And, I finished the

interferon treatment about 13 months or so ago. The symptoms I'm experiencing

must be the Hepatitis, or . . . could I still be suffering some after affects

from the tx?

Another question for all: Is there any definitive answers on what the progress

will be? That is, will I continue to get sicker and have my liver fail? How long

is the average progression? All the Mayo clinic told me was a few vague remarks

about susceptibility to liver cancer. Granted I had to leave Mayo 3/4 of the way

into tx-my insurance changed and I would have had to pay up to 60% out of

pocket.

Re: Okay, here goes . . .

well this is the 2nd attempt to write this, puter went ziipttt,, darn it,,

well first off, welcome, Im glad you found us altho Im sorry you have this

disease!

Docs dont associate a lot of the symptoms you have with hep c,, and they ARE

WRONG! They call this a silent disease but thats cuz THEY dont feel what we

do...

This disease will affect every part of your life and it will not make a

marriage easier, but you can do this ,, Im sorry you were unable to tolerate tx,

there are a lot of others in the same boat, this treatment is not easy.. I was

able to do it only because of the support I had and I was able to spend an

entire year in bed ,, my hubby was so supportive and took me to every doc appt,

and took over absolutely EVERYTHING! had I been married to my former spouse,

there would have been no way I could have finished tx... but dont be hard on

yourself..

Did you have a biopsy? How much damage do you have? stage? what genotype

are you?

There are lots of things you can do to help maintain your health as well

too...

I am becomming an ND with a bachelors in nutrition so that being said,, I

also have to say that there is NO natural treatment that can cure this disease

at this point.. so dont get sucked into any schemes, there ARE however things

you can do and supplements you can take to help your liver maintain as long as

possible,, like Milk Thistle,, siliphos bound milk thistle is the best,

schizzandra is good, green tea is good.. but none of this will cure this

disease..

anyway, welcome,, and please feel free to email me personally if I can help

you in any way. Just remember that I am not a medical doc, but I do have 15

years in emergency medicine as a 911 paramedic and anything I say to you should

be run by your doc before you try anything,,

ok thats my disclaimer, lol,, welcome to the group,,

jackie

Jackie on <redjaxjm@...> wrote:

Im going to answer this but I want to think about it for a min,,, God Bless

you hon, you are not going insane, altho it might feel that way,,

Bnhoffer2@... wrote:I joined this list with the express purpose of

getting some answers and, well much as I'd prefer " lurking " I know my questions

won't be answered if I don't ask them!

Almost three years ago I was diagnosed with Hepatitis C, and that after

almost a year of being sick and not knowing why. I've heard of people being sick

with obscure things and having doctors suggest it was " all in their head, " I

never dreamed it would happen to me . . . it did. That's another story. However,

that early undiagnosis and then bungled diagnosis along with the " all in your

head attitude " seems to have set the tone for my past three years experience

with Hepatitis.

I've done interferon/rebetrol, almost the whole course. I quit month 10,

another story. It wasn't working anyway and my experience with interferon was

horrific, I'm still not sure if it is that medication or the disease itself that

has so radically changed my life.

It has been over a year since I ended the interferon so now I assume I'm

dealing with Hepatitis itself. I really want to know if others have similar

problems or if it's just me.

My biggest problem is fatigue, lack of enthuiasm-depression. It has been

profound during the last year.

Another debilitating issue is aches and pains. Sometimes it's my hands, my

chest, almost every day my back/spine just aches and aches.

The interferon damaged my thyroid-first it was overactive, then

underactive-for a while it didn't appear to be working at all-those days were

tough. Now the thyroid test lean towards the normal range, subsequently the

doctors tell me my thyroid is just fine- " you are probably just depressed. " While

that may be true, the message was very condescending.

I know that I lost most of my strength and body condition through the whole

ordeal-now it feels like a vicious cycle where I don't have the drive to get

back in shape-consequently a feel like a physical sloth and then I ache and just

feel worse and so on . . . I end up hating myself.

Am I a physical mess? or a psychological mess? I'm not sure whether I should

go to the doctor or the shrink.

Things are sort of a mess: I'm married (second marriage) with a blended

family. I feel like my husband has bungled quite a bit through this and while

I'm trying so hard to let it go and not hold it against him I find I have so

much resentment, and I feel very alone with this problem. I have six children

(two step) all of whom are teenagers. I've tried hard not to complain and burden

them and while it's true they don't see me as " sick " necessarily I feel like I

can't confide in them now that I've set the tone that my being sick is not going

to interfere with their adolescence.

I live in a semi rural area, about an hour or so from a " metro " area. The

clinic here has really done more harm then good. From the initial diagnosis I

have experienced dismissal and lack of knowledge about Hepatitis to total

apathy. I finally switched doctors this spring and I think I really got a good

one-this week we TALKED for at least 25 minutes, he was intelligent and

respectful and showed some sincere desire to try and make things better. Now if

my mind can just forget about three years of poor treatment and ignorant

attitudes.

Okay, that's enough about me, I realize that I could go on and on. I guess

the main point here is that I know with my " head " that mistakes were made and

ignorance about Hepatitis is very real-I should be able to let that go . . . but

I haven't I feel condemned and broken and quite ready to go live alone with

cats.

I just want to know if it's me.

[Guest guest]

No kidding, urped sour milk, ugh,, hahahaha,, so does he get car sick now?

anne <kanga2@...> wrote:No problem Jackie,

Like you said if it works it works and it worked for us. It was sooooo nice not

having to constantly clean up baby sick let me tell ya! <grin>

Love

anne

Re: Jackie . . . tell me more.

WOW anne,,,

That is one strange answer but hey if it works,, it works,, I havent ever

heard of that before, but just maybe what happened, and this is only my opinion,

so no one jump on me here,, lol,, maybe becasue he did get car sick and so every

time you got in the car, you were expecting him to get car sick, it made YOU on

edge and babys are like little sponges and they soak up our emotions,, and maybe

your son was feeling your stress about whether or not he was gonna get car sick

or not and that made him get sick, and so when you attached the hose to the

bumper, you expected it to work and so you were not putting out stress and so

the baby relaxed... Hell, I dont know, just a guess, but whatever, it worked and

thats what counts,, its sad that some docs can see that just because they cannot

explain something that doesnt make it not worthy ,,, Im glad that worked and I

will add that to my info for car sickness,,

hugs maryanne, and thanks for sharing that one,

love

jax

anne <kanga2@...> wrote:

Re: Car sickness.

When my middle son was just a baby, he began to suffer from motion sickness

(it has to do with the middle ear somehow). A wise old friend told me to go to

a car-care store and buy a length of rubber strapping. You affix it to the

underside of the back bumper and it hangs just long enough to touch the ground.

Now I don't know if there is any medical basis for it or whether it's just an

old-wives tale but it somehow grounds the car and we had no more car sickness

after that. It was an inexpensive fix and worked for us.

Love

anne

A new potential problem has me wondering too. If someone could please advise

I'd be grateful:

Last week I noticed I was getting carsick, to the point of losing my lunch.

I've experienced nausea before-especially during the interferon. By last Friday,

and then Saturday I could hardly be in the car longer than a few minutes and I

was nauseous here and there at home.