(No subject)

[Guest guest]

Hi Carolee,

Sorry about the relapse. I'm not looking forward to my next viral load test

or liver enzyme tests. I always go to the people who took my tests to get

results. I have them done at a hospital lab, and can get the results very

quickly. Liver Enzyme tests are usually ready the same day and viral load

tests take about 10 days(because they have to be sent to another lab). But

you need to ask about it, and not wait for the doctors. I've found out that

I have to take control of my treatment, tests, and meds, because you can't

count on others to do their best for you. Sometimes you just have to pester

them to death.

I got a test result back once from the hospital that said the interferon I

was taking was causing thyroid problems. I had to call my doctor's office

(long distance) three times before he called back to tell me to get off the

interferon. He hadn't gotten a copy of the test results and I'd had them

for a week.

Is your husband going to go on interferon? That's probably what I'll do if

(or when) I have a relapse. I get an Update newsletter from the Hepatitis

Foundation International, and there are new treatments on the horizon that

are now being tested. They are suppposed to have less side effects and have

a better response rate.

So hang in there, and like you said, just love each other. That's the best

medicine. My husband's love has really gotten me through the hardest times.

Take care,

Marie

At 07:56 PM 12/28/98 -0500, you wrote:

>From: Cherry 2000 <cherry2000@...>

>

>Thanks for the Merry Xmas message. Wish it were. My husband has relapsed

> as I suspected. The thing that's got me seriously upset though is that

>the blood test was done on Sept 24 and we just found out on Dec 18 that he

>had relapsed. The doctor never even looked at the results. Very upsetting

>to both of us.

>We hope you have a HappyNewYear. We are going to take it one day at a time

>and just love each other.

> Carolee

>

>----------

>From: MARIE LEDUC[sMTP:m.j.leduc@...]

>Sent: Thursday, December 24, 1998 4:44 PM

> infoCFS_ME_FMonelist

>Subject: Merry Christmas to all!

>

>From: MARIE LEDUC <m.j.leduc@...>

>

>Hi everyone,

>

>May you have a Merry Christmas! Take it easy so YOU can enjoy the holiday

>too!

>

>I just heard that my nephew will have our computer back and running

>tomorrow for us so I will be osting regularly starting the 26th.

>

>We had over 10 inches of snow over night so we will have a white Christmas

>here in the Vancouver, BC Canada area. It has started to rain now so I hope

>it does not freeze tonight to make the roads very slippery tomorrow for

>those who have to drive to visit family.

>

>Merry Christmas and an enjoyable holiday,

>

>Jeannette Leduc

>

>

>

>

>------------------------------------------------------------------------

>

[Guest guest]

Dear Marie,

Thanks for the kind words. After 20 years of my husband being in the

military and getting the lousiest medical treatment available I truly

believed the civilian doctors would keep us up to date. So did my husband.

Now we know that we have to be at least as vigilant with the care he is

receiving.

We aren't sure if he's going to go back on the interferon. The side

effects were pretty rough for him. The new pill....I forget its

name.....is not an option for Vinny. His doctor says his white blood cell

count was very dangerously low the last time and he is afraid it would

cause a heart attack. God, this disease scares me to pieces.

Have a safe New Year. And keep writing to me?

Carolee

----------

From: Marie Kuhn[sMTP:mariek@...]

Sent: Monday, December 28, 1998 8:42 PM

Hepatitis Conelist

Subject: Re: (no subject)

From: Marie Kuhn <mariek@...>

Hi Carolee,

Sorry about the relapse. I'm not looking forward to my next viral load

test

or liver enzyme tests. I always go to the people who took my tests to get

results. I have them done at a hospital lab, and can get the results very

quickly. Liver Enzyme tests are usually ready the same day and viral load

tests take about 10 days(because they have to be sent to another lab). But

you need to ask about it, and not wait for the doctors. I've found out

that

I have to take control of my treatment, tests, and meds, because you can't

count on others to do their best for you. Sometimes you just have to

pester

them to death.

I got a test result back once from the hospital that said the interferon I

was taking was causing thyroid problems. I had to call my doctor's office

(long distance) three times before he called back to tell me to get off the

interferon. He hadn't gotten a copy of the test results and I'd had them

for a week.

Is your husband going to go on interferon? That's probably what I'll do if

(or when) I have a relapse. I get an Update newsletter from the Hepatitis

Foundation International, and there are new treatments on the horizon that

are now being tested. They are suppposed to have less side effects and have

a better response rate.

So hang in there, and like you said, just love each other. That's the best

medicine. My husband's love has really gotten me through the hardest times.

Take care,

Marie

At 07:56 PM 12/28/98 -0500, you wrote:

>From: Cherry 2000 <cherry2000@...>

>

>Thanks for the Merry Xmas message. Wish it were. My husband has relapsed

> as I suspected. The thing that's got me seriously upset though is that

>the blood test was done on Sept 24 and we just found out on Dec 18 that he

>had relapsed. The doctor never even looked at the results. Very

upsetting

>to both of us.

>We hope you have a HappyNewYear. We are going to take it one day at a

time

>and just love each other.

> Carolee

>

>----------

>From: MARIE LEDUC[sMTP:m.j.leduc@...]

>Sent: Thursday, December 24, 1998 4:44 PM

> infoCFS_ME_FMonelist

>Subject: Merry Christmas to all!

>

>From: MARIE LEDUC <m.j.leduc@...>

>

>Hi everyone,

>

>May you have a Merry Christmas! Take it easy so YOU can enjoy the holiday

>too!

>

>I just heard that my nephew will have our computer back and running

>tomorrow for us so I will be osting regularly starting the 26th.

>

>We had over 10 inches of snow over night so we will have a white Christmas

>here in the Vancouver, BC Canada area. It has started to rain now so I

hope

>it does not freeze tonight to make the roads very slippery tomorrow for

>those who have to drive to visit family.

>

>Merry Christmas and an enjoyable holiday,

>

>Jeannette Leduc

>

>

>

>

>------------------------------------------------------------------------

>

[Guest guest]

Hi Carolee,

I thought about going on that new combination treatment, too, the one with

interferon and ribavirin (the pill). But it costs $8,000 for a 6 months

supply and my insurane only pays 75%. We'd have to pay about $350 a month,

which we don't have.

Also, I don't think I'd want to go through the side effects of this new

combination treatment, it is supposed to be worse than the interferon alone.

Like you said, it's not good for the immune system, because it seems to

destroy red blood cells. The interferon alone did that to me, not to

mention causing thyroid problems. What a mess, the medicine is worse than

the disease, it seems.

Sometimes I think I just want to stay off the medication, because I don't

want to feel bad all the time.

I am taking the herb Milk Thistle which is supposed to protect the liver.

You could read up on it and see if your husband wants to take it. I went

into remission faster than normal, and it could be the Milk Thistle. I've

heard of people getting great results from it.

Well, hope you have a good New Year. My children, ages 24 and 27 are coming

to town for the New Years weekend, so I'll probably be busy with them.

Take care of yourselves,

Marie

[Guest guest]

>Marie Kuhn <mariek@...> wrote:

>I've heard of the cornea problem.<

>Well, glad to have someone around to talk to.<

Have you really??? You are the first affirmative answer I've had on

this. I have to have surgery again this coming Monday---there are

several areas of activity again. Rats.

While my husband had his other insurance, the combo therapy was only

costing me the $5 co-pay---and the company that makes the drugs, while

they have programs to help people with low incomes, or no insurance,

to be able to afford the drugs, told me that because I have Medicare

to pay the 80%, they couldn't help me. Of course, that remaining 20%

would've been $900---a little out of my league.

I'll post again next week or so, after my eye heals enough to be able

to stand the light from the monitor---

Pray for me, OK?

Kathi

==

Visit my webpage at:

http://members.tripod.com/~rdhd45vlcek/index.html

and my support group at:

http://clubs./clubs/parentingtroubledteens

ICQ 22539187

[Guest guest]

I hope your surgery goes well next week sweetie.

Sincerely,

Carolee

----------

From: Kathi [sMTP:rdhd45vlcek@...]

Sent: Friday, January 15, 1999 6:36 AM

Hepatitis Conelist

Subject: Re: (no subject)

From: Kathi <rdhd45vlcek@...>

>Marie Kuhn <mariek@...> wrote:

>I've heard of the cornea problem.<

>Well, glad to have someone around to talk to.<

Have you really??? You are the first affirmative answer I've had on

this. I have to have surgery again this coming Monday---there are

several areas of activity again. Rats.

While my husband had his other insurance, the combo therapy was only

costing me the $5 co-pay---and the company that makes the drugs, while

they have programs to help people with low incomes, or no insurance,

to be able to afford the drugs, told me that because I have Medicare

to pay the 80%, they couldn't help me. Of course, that remaining 20%

would've been $900---a little out of my league.

I'll post again next week or so, after my eye heals enough to be able

to stand the light from the monitor---

Pray for me, OK?

Kathi

==

Visit my webpage at:

http://members.tripod.com/~rdhd45vlcek/index.html

and my support group at:

http://clubs./clubs/parentingtroubledteens

ICQ 22539187

------------------------------------------------------------------------

[Guest guest]

---Cherry 2000 <cherry2000@...> wrote:

Are there that many of us

> that are willing to be activists? Or is there shame?

Cherry--

I decided to make the most of my own condition, and use it to warn

friends' children, people on the 'Net, and strangers in dr's offices,

etc, of the ramifications of not only the hep c, but the drug use that

got me here in the first place. I was told by one lady that she had

never had anyone admit that they had gotten it from using

needles--well, I did, when a hippie in the '60's. As I go through the

various treatments, side effects, etc, like the condition in my eye, I

broadcast it---I want this to become known, to prevent as many as I

can from going through this as I can. I KNOW it's made an impact on

my children, and they spread the word, as well--

All the small voices form a roar--

Kathi

==

Visit my webpage at:

http://members.tripod.com/~rdhd45vlcek/index.html

and my support group at:

http://clubs./clubs/parentingtroubledteens

ICQ 22539187

[Guest guest]

I really don't know that much about the " levels " in the liver

panels---where does 52,000 fall?

Kathi

==

Visit my webpage for parents of troubled teens at:

http://members.tripod.com/~rdhd45vlcek/index.html

and my support group for those parents at:

http://clubs./clubs/parentingtroubledteens

ICQ 22539187

[Guest guest]

Well my husband and I are married 25 yrs. I have been tested 3 times with no

sign of hep c. We tried the condoms but busted out laughing.

Lawrence Lemer wrote:

> From: Lawrence Lemer <ljlemer@...>

>

> This is a serious and troubling question: I have a new girlfriend and I

> told her I'm HCV+. We haven't been intimate yet and she's obviously

> concerned about contagion. What would you advise?

> >

> > From: Kathi <rdhd45vlcek@...>

> >

> > I really don't know that much about the " levels " in the liver

> > panels---where does 52,000 fall?

> > Kathi

> > ==

> > Visit my webpage for parents of troubled teens at:

> > http://members.tripod.com/~rdhd45vlcek/index.html

> > and my support group for those parents at:

> > http://clubs./clubs/parentingtroubledteens

> > ICQ 22539187

> >

> > ------------------------------------------------------------------------

> > Ta Da! Come see our new web site!

> >

> > Onelist: A free email community service

>

> ------------------------------------------------------------------------

> Is ONElist important to you? Has it changed your life?

>

> Come visit our new web site and share with us your stories

[Guest guest]

This is a serious and troubling question: I have a new girlfriend and I

told her I'm HCV+. We haven't been intimate yet and she's obviously

concerned about contagion. What would you advise?

>

> From: Kathi <rdhd45vlcek@...>

>

> I really don't know that much about the " levels " in the liver

> panels---where does 52,000 fall?

> Kathi

> ==

> Visit my webpage for parents of troubled teens at:

> http://members.tripod.com/~rdhd45vlcek/index.html

> and my support group for those parents at:

> http://clubs./clubs/parentingtroubledteens

> ICQ 22539187

>

> ------------------------------------------------------------------------

> Ta Da! Come see our new web site!

>

> Onelist: A free email community service

[Guest guest]

Lawrence,

My Doc told me there are no documented cases of normal sex

transmission. She advised against anal sex but I think that's gross anyway.

Jul

ie

[Guest guest]

We are convinced 210 mg of Milk Thistle/day and artichokes weekly were

responsible for a nice year-long respite from the symptoms my husband

enjoyed-- AND tests showed his liver functions improved dramatically.

[Guest guest]

Put in the perspective that the chances of dying from Hep C versus getting

in a fatal car accident or just getting out of bed in the morning I know I

will die of something else.

It is more a quality of life issue. I choose to live life not remain in fear

about living it.

If Hep C and the related issues influence a persons life to such an extent

that they are at least partially immobilized then there are far more

personal issues really going on than any virus.

Everything in my life that is based on fear I rethink it. I look closely at

why I'm feeling it and like FDR said " The only thing to fear is Fear

itself. "

(no subject)

>From: Smuglee@...

>

>hello all

> I have been reading about all the comments about the sex issues. My

>husband and I too are very careful because he does not want me to contract

>the virus. Somewhere in the back of my mind I am scared that i might

somehow

>wind up with contracting it. However I think my biggest fear is one day

this

>awful desease will take him away from me and that scares me the most. I

hate

>seeing him sick all the time and I know he is worried on how I will be

>without him. I really tried to understand what he is going though and I

dont

>get mad when he starts to lash out because I know he has to be tired of

being

>sick. Well I just wanted to talk this out. Thanks for listening.

>

>

>

[Guest guest]

Anytime . That's why a lot of us are here, to

learn and share our common problems. I sure can't

speak for anyone else, but it sure helps me to know

that others are confronting and dealing with the same

problems that we are (lack of sexual desire, bleeding,

extreme fatigue, moodiness, fear, etc.)

Jeanie

--- Smuglee@... wrote:

> hello all

> I have been reading about all the comments about

> the sex issues. My

> husband and I too are very careful because he does

> not want me to contract

> the virus. Somewhere in the back of my mind I am

> scared that i might somehow

> wind up with contracting it. However I think my

> biggest fear is one day this

> awful desease will take him away from me and that

> scares me the most. I hate

> seeing him sick all the time and I know he is

> worried on how I will be

> without him. I really tried to understand what he

> is going though and I dont

> get mad when he starts to lash out because I know he

> has to be tired of being

> sick. Well I just wanted to talk this out. Thanks

> for listening.

>

>

<HR>

<html>

>

=====

[Guest guest]

I disagree, . You have to take this disease seriously enough to try

to prevent its progression and transmission. Arlene

[Guest guest]

Give us a break, . The plain truth is that this disease is one to be

feared, although not to the extent that life itself is ruined. As for your

previous long dissertation on ine's avoidance of her husband, I think

this is very unfair for you to presuppose what is in her heart and in a sense

dispute what she is saying. This kind of thing is considered mind rape. As

a therapist, I find it very destructive. My 2 cents. Arlene

[Guest guest]

yeah like the next breath we take is to be feared. Give Me a break and

understand what fear is about!!!!

Fear is the idea of not knowing, Fear is justified by ignorance.

If you and others think that all there is to experience is fear I leave you

to your thoughts. Have fun with Fear. Hope you get lots of stuff out of it.

There is Fear and Knowing. I choose Knowing.

With Love,

There is fear or there is understanding. There is being cautious with

information and there being without.

Re: (no subject)

>From: Arlbrus@...

>

>Give us a break, . The plain truth is that this disease is one to

be

>feared, although not to the extent that life itself is ruined. As for your

>previous long dissertation on ine's avoidance of her husband, I think

>this is very unfair for you to presuppose what is in her heart and in a

sense

>dispute what she is saying. This kind of thing is considered mind rape.

As

>a therapist, I find it very destructive. My 2 cents. Arlene

>

>

[Guest guest]

I am not sure this went through the first time, or to the other group I am

on...lol.. because I am yet to see it, so I sent it again, sorry if it is a

double.

ine

> well I am sorry, I didn't mean to make everyone upset with what

> I was feeling, I posted to the group, to get everyones thoughts on the

> matter.. not to make everyone argue.

>

> Micheal- I am a simply person I read and reread you post to me..I totally

> accept what you had to say, they were your thoughts and ideas just like I

> have mine, Yes they may work for you that way, but for me and my family,

> this disease is a BIG part of our life, whether we like it or not, it is

> there day in day out... it affects us in many ways emotionally and

> physically. Yes I do have a lack of sexually desire which I believe stems

> from not just one area of my life, but many..as I said before and Yes hepC

> is the formost in my mind...I can't not change this, Yes I can try to

> change the way I think by gaining more and more knowledge, but honestly

the

> more I read the more I am afraid, " there are so many different and

> conflicting ideas of what this disease is about and what it can and can

not

> do, how it can and cannot be spread that frankly I don't think anyone

knows

> really...it is like picking the short straw. I know the medical profession

> are doing their best to work this disease out, and Thank God we have them

to

> do that...

> =======================

> Micheal wrote:

> If you truly love your husband and would save his life in a second look at

> what your fear based attitude is doing. Its killing him slowly. I say this

> from a male perspective. He needs to know your there for him in all ways.

> ========================

> This comment Micheal did upset me... I do truly love my husband, it isn't

my

> fear that is killing him Micheal, it is this damn disease that is killing

us

> both...you may now say that this is fear based, but in my mind this is the

> fact....it might take years, it might not happen in your situation...but

my

> husband has extremely low immunity because of the immunosuppressants he

> takes for his transplant, so this allows this virus to work some over-time

> on his liver, so instead of doing its job slowly but surely, it does it at

d

> ouble speed..

> He can't not have the therapy that is currently available because of the

> risk of losing his kidney among other reasons...

> ine.

> ================

> Micheal wrote:

> Please understand this is not written in judgment it is written as more an

> observation and from a caring view.For God's sake is there no joy in

> Mudville?

> From the way you describe you concern of his every small ache and pain it

> feels like there is a lot of enabling going on here. The focus on the

> perceived external needs can be an easy out to looking at the real issues

> going on.

>

> =============================

> Micheal, we have lived in Mudville all our lives, and we LOVE IT..... )

> as for the worry about his every pain...Micheal our entire life together

so

> far has had many emergencies in it that just pop up out of the no where..

it

> can happen to anyone,I agree but it isn't likely to be a life time thing

> that happens regularily...YES I do worry to much, YES I catastrophize I am

> expecting somthing to happen all the time,

> I have to say one thing though, I live on my fear I know this, I try not

to

> but after 20 years of doing it, it is very had to change.

> ==================

> Micheal wrote:

> Take the fear and concern for the future a way and your lives would be far

> different than they are now.

> ==================================

> Take the disease away from the 'Present' and the 'Future', yes our lives

> now would be different...

> ine

>

> Micheal you probably are alot older and wiser then I.. )

> but I am young and was very young when I met my husband, he has constantly

> been sick all those years, I have constantly lived in fear of losing

him...

> I would like you to read our story

> if I may send it to the group, I would like you all to read it...

>

> Thanks

> ine..

>

>

>

>

> Re: (no subject)

> >

> >

> > >From: Arlbrus@...

> > >

> > >I disagree, . You have to take this disease seriously enough to

> try

> > >to prevent its progression and transmission. Arlene

> > >

> > >

> >

> > >

[Guest guest]

I respectfully disagree also .

----------

From: Arlbrus@...[sMTP:Arlbrus@...]

Sent: Sunday, October 31, 1999 7:51 AM

Hepatitis Conelist

Subject: Re: (no subject)

From: Arlbrus@...

I disagree, . You have to take this disease seriously enough to try

to prevent its progression and transmission. Arlene

[Guest guest]

If anyone disagrees with not only me but anyone else saying specifically why

they disagree can lead to further discussion.

I've received some flack for what appears to be my current feelings about

the Hep C issue and not taking this condition seriously. Well then tell me

why I should view it in the ways some of you feel is right. Don't just tell

me you think I'm wrong tell me why!!!

Lets get on with the discussion and help everyone heal.

As you can see Cyn offered me an option with a different site. His idea also

is to put a little humor in all this and start taking out all this

preoccupation with the serious possibilities.

There can be humor here as well as the other. Its called balance. With

balance to me there is health.

Re: (no subject)

>

>From: Arlbrus@...

>

>I disagree, . You have to take this disease seriously enough to try

>to prevent its progression and transmission. Arlene

>

>

[Guest guest]

I am very sorry to hear of your loss. Take care of yourself in every way.

When my mother died, I learned something surprising about grief: that it is

a time to deeply appreciate the dear one who has died. Please get in touch

again when you return.

Aikya

(no subject)

> From: " <Klara Jori-Neil + Philip Neil> " <jorineil@...>

>

> I have to unsubscribe this for at least a month. I have to fly to

> Switzerland, my mother has passed away. I dont know when I will be back,

> but I will rejoin you than again, and will let you know how I managed to

> keep the diet under this circumstances.

>

> I wish all of you a happy Christmas and a successful New Year.

>

> All the best

> Klara

> Thansk again for your support.

>

> >

[Guest guest]

> From: Smuglee@...

>

> HI SHIRLEY,

> WELCOME TO TO GROUP. YOU HAVE COME TO THE RIGHT PLACE FOR

> SUPPORT AND THIS IS A VERY INFORMATIVE GROUP.

> LINDA

Thanks . I feel better already. Happy Thanksgiving!

Shirley

[Guest guest]

HELLO MICHAEL,

JOE IS DONE ALL HIS TREATMENTS AND WILL NOT HAVE ANYMORE. HE

WAS ON RIBAFIN AND INTERFERON AND HIS LAST TREATMENT DID NOTHING FOR HIM. HE

ALSO FEELS A WEIGH AT HIS SIDE BUT HAS VERY UNCOMFORTABLE PAIN. HE HAS HAD

THREE BIOPSIES. HE IS SO TIRED ALL THE TIME. BUT HE IS IN GOOD SPIRITS MOST

TIMES HE DONT COMPLAIN BUT I SEE IN HIS FACE.

TAKE CARE

LINDA

[Guest guest]

In a message dated 1/12/00 4:58:57 AM Pacific Standard Time, Smuglee@...

writes:

HE IS SO TIRED ALL THE TIME. BUT HE IS IN GOOD SPIRITS MOST

TIMES HE DONT COMPLAIN BUT I SEE IN HIS FACE.

Joe`s lucky to have you there to help him through these trials..............

Give him my love, and well-wishes......we`ll pulling for him!

((((((((((((((((((((((((((((JOE)))))))))))))))))))))))))))))

and for you,

too....(((((((((((((((((((((((((((((((LINDA)))))))))))))))))))))))))))

Please keep us updated.

good luck,

good loving,

good health,

good life,

~good-bye~

debmc

[Guest guest]

Dear ,

Personally I have the sense of feeling almost a weight where my liver is

but no pain. What kind of treatment has he gone through? Does he look

forward to or need additional therapy?

Yesterday I found after 48 weeks of combo therapy my viral load

increased by nearly 45%. Oh joy!! As presently my doctor feels there is

nothing he can offer to me I have decided to begin to rely less on

medication and look to self healing. Conventional therapy primarily focuses

on the external and does not take in nor accept what power the individual

really has.

I remind myself each day that to me everything is really neutral until

and unless I make it something else. I accept and know I am the creator of

all of it.

With Love,

(no subject)

>From: Smuglee@...

>

>HELLO EVERYONE,

>

>

> I HAVE BEEN OFF LINE FOR AWHILE AND MISSED YOU ALL. MY

HUSBAND

>HAS BEEN REALLY HAVING ALOT OF PAIN IN HIS SIDE IS THIS NORMAL, HE IS DONE

>ALL THE TREATMENTS AND IS NOT ON ANY KIND OF MEDS. IF ANYONE KNOWS ANY

INFO

>I WOULD APPRECIATE IT

>TALK TO U SOON

>LINDA

>

>---------------------------

[Guest guest]

Have you tried Reiki??

Merril