memory loss

[Guest guest]

I love water, but I am fluid restricted. I can only have 1500cc of liquid a

day. I am taking diuretics. I had alot of swelling in my legs and feet and

ascites(fluid in abdominal cavity). I am at the end stages of this liver

disease. I hate having this cryptogenic cirrhosis. I am one of those that

they just don't know what caused the liver damage. I am going to be fine.

My children give me lots of strength. My little 11 year old multihandicapped

cerebral palsy is a fighter. If she can be happy and content, then I should

be too. My 8 year old son is always telling me that he prayed and God would

make me a new liver. I thought that was so precious. I thought I let you

know that they both had their birthday today (Jan. 23rd). Hope I didn't

bore you, but I love my little ones. Thank you for you kindness and being

there.

Take care and God bless,

Your in my prayers,

Virginia

Curlykew wrote:

> From: Curlykew <curlykew12@...>

>

> I'm not a doctor, nor do i have good

> communications with my GI, but i did have that

> memory stuff. I called it " swimmy head " . Trouble

> concentrating. But just recently did realize I

> haven'g felt that way in a long time. Not sure

> why but did start drinking lots and lots of water

> and started the combo treatment.

>

> --- isqazi@... wrote:

> > I have been diagnosed with liver disease

> > secondary to cryptogenic cirrhosis. I have had

> > the ascites and hepatic encephalopathy. I have

> > been quite concerned with the confusion,

> > forgetfulness and the memory loss. I take

> > diuretics, lactulose, neomycin, magnesium,

> > multivitamins, folic acid, and a calcium

> > supplement. I had at first thought the

> > lactulose and neomycin would totally take care

> > of all the memory loss and forgetfulness. I

> > have to constantly adjust the lactulose. I

> > worry because of my sweet 8 year old son and 11

> > year old multihandicapped cerebral palsy

> > daughter. Since my daughter is on seizure

> > medications and other medications, they can't

> > be forgotten to give to her. I am thankful for

> > my parents helping me. I just wonder if the

> > forgetfulness, memory loss and confusion ever

> > be totally controlled. I am listed for a

> > transplant and hope that things will be normal

> > again. It just hurts to know that someone now

> > has to take care of my children and me. I want

> > to be my children's Mother again. I sometimes

> > feel like a failure. I read the e-mail sent to

> > me by this group and pray for you daily.

> > God Bless and Take Care,

> > Virginia

> >

>

> =====

> My message to you: Don't worry, be happy!!

> Love to hear from YOU!

> Dawn

> __________________________________________________

>

[Guest guest]

I'm not a doctor, nor do i have good

communications with my GI, but i did have that

memory stuff. I called it " swimmy head " . Trouble

concentrating. But just recently did realize I

haven'g felt that way in a long time. Not sure

why but did start drinking lots and lots of water

and started the combo treatment.

--- isqazi@... wrote:

> I have been diagnosed with liver disease

> secondary to cryptogenic cirrhosis. I have had

> the ascites and hepatic encephalopathy. I have

> been quite concerned with the confusion,

> forgetfulness and the memory loss. I take

> diuretics, lactulose, neomycin, magnesium,

> multivitamins, folic acid, and a calcium

> supplement. I had at first thought the

> lactulose and neomycin would totally take care

> of all the memory loss and forgetfulness. I

> have to constantly adjust the lactulose. I

> worry because of my sweet 8 year old son and 11

> year old multihandicapped cerebral palsy

> daughter. Since my daughter is on seizure

> medications and other medications, they can't

> be forgotten to give to her. I am thankful for

> my parents helping me. I just wonder if the

> forgetfulness, memory loss and confusion ever

> be totally controlled. I am listed for a

> transplant and hope that things will be normal

> again. It just hurts to know that someone now

> has to take care of my children and me. I want

> to be my children's Mother again. I sometimes

> feel like a failure. I read the e-mail sent to

> me by this group and pray for you daily.

> God Bless and Take Care,

> Virginia

>

=====

My message to you: Don't worry, be happy!!

Love to hear from YOU!

Dawn

__________________________________________________

[Guest guest]

> > From: Curlykew <curlykew12@...>

> >

> > I'm not a doctor, nor do i have good

> > communications with my GI, but i did have that

> > memory stuff. I called it " swimmy head " . Trouble

> > concentrating. But just recently did realize I

> > haven'g felt that way in a long time. Not sure

> > why but did start drinking lots and lots of water

> > and started the combo treatment.

Hi list,

As a 53 year old female who has had HCV for nearly 30 years, I have some

experience with memory loss and " brain fog " . It surprised me to discover

that stress has a great deal to do with how the mind copes & remembers. Once

I was diagnosed in Feb.99 I could take steps to control my health. Reducing

stress as much as possible helps. I take Coenzyme Q10, 60 mg daily. It is

said to enhance tissue oxygenation & counteract immunosuppression.Anything

that you can do to enhance general health & well being will help the body

function as best it can.Consulting with your doctor,naturopath etc. on how

to achieve this is always advisable.Then hopefully the brain & immune system

can do their job & keep us going.

wmm@...

BC. Canada

[Guest guest]

In a message dated 01/24/2000 4:47:02 AM Eastern Standard Time,

curlykew12@... writes:

<< it is our kids that do keep us

going many times...just wish could get dau to

understand how i am feeling...she was kind of

brainwashed by my hus...soon to be ex...that i am

just faking most of this...he believes different

now but damage was done with dau and is at

Dawn,

I have a letter than a dear friend sent me about a year ago that possibly you

could print and give to your daughter and ex and anyone else who thinks you

are faking.

http://www.tiac.net/users/birdlady/let_norm.html

Letter to People Without Hepatitis

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Having Hepatitis means many things change, and a lot of them are invisible.

Unlike having cancer or being hurt in an accident, most people do not

understand even a little about HCV and its effects, and of those that think

they know, many are actually mis-informed. In the spirit of informing those

who wish to understand ... These are the things that I would like you to

understand about me before you judge me... Please understand that being sick

doesn't mean I'm not still a human being. I have to spend most of my day in

considerable pain and exhaustion, and if you visit I probably don't seem

like

much fun to be with, but I'm still me stuck inside this body. I still worry

about life and work and my family and friends, and most of the time I'd

still

like to hear you talk about yours too.

Please understand the difference between " happy " and " healthy " . When

you've got the flu you probably feel miserable with it, but I've been sick

for years. I can't be miserable all the time, in fact I work hard at not

being miserable. So if you're talking to me and I sound happy, it means I'm

happy. That's all. It doesn't mean that I'm not in a lot of pain, or

extremely tired, or that I'm getting better, or any of those things. Please,

don't say, " Oh, you're sounding better! " . I am not sounding better, I am

sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes, doesn't

necessarily mean that I can stand up for twenty minutes, or an hour. And,

just because I managed to stand up for thirty minutes yesterday doesn't mean

that I can do the same today. With a lot of diseases you're either paralyzed,

or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, " sitting " , " walking " ,

" thinking " , " being sociable " and so on ... it applies to everything. That's

what Hepatitis does to you. Please understand that HCV or HBV is variable.

It's quite possible (for me, it's common) that one day I am able to walk to

the park and back, while the

next day I'll have trouble getting to the kitchen. Please don't attack me

when I'm ill by saying, " But you did it before! " , if you want me to do

something then ask if I can. In a similar vein, I may need to cancel an

invitation at the last minute, if this happens please do not take it

personally. Please understand that " getting out and doing things " does not

make me feel better. Telling me that I need a treadmill, or that I just need

to loose (or gain)weight, get this exercise machine, join this gym, try these

classes... may frustrate me to tears, and is not correct... if I was capable

of doing these things, don't you know that I would? I am working with my

doctor and physical therapist and am already doing the excercise and diet

that I am suppose to do. Another statement that hurts is, " You just need to

push yourself more, exercise harder... " Obviously HCV deals directly with

muscles, and because our muscles don't repair themselves the way your muscles

do, this does far more damage than good and could result in recovery time in

days or weeks or months from a single activity. Also, Hepatitis may cause

secondary depression (wouldn't you get depressed if you were hurting and

exhausted for years on end!?) but it is not created by depression. Please

understand that if I say I have to sit down/lie down/take these pills now,

that I do have to do it right now - it can't be put off or forgotten just

because I'm out for the day (or whatever). Hepatitis does not forgive.

If you want to suggest a cure to me, don't. It's not because I don't

appreciate the thought, and it's not because I don't want to get well. It's

because I have had almost every single one of my friends suggest one at one

point or another. At first I tried them all, but then I realized that I was

using up so much energy trying things that I was making myself sicker, not

better. If there was something that cured, or even helped, all people with

Hepaititis then we'd know about it. This is

not a drug-company conspiracy, there is worldwide networking (both on and

off the Internet) between people with Hepatitis if something worked we would

KNOW.

If after reading that, you still want to suggest a cure, then do it, but

don't expect me to rush out and try it. I'll take what you said and discuss

it with my doctor.

In many ways I depend on you - people who are not sick - I need you to visit

me when I am too sick to go out... Sometimes I need you help me with the

shopping, cooking or cleaning. I may need you to take me to the doctor, or to

the physical therapist. I need you on a different level too ... you're my

link to the outsideworld... if you don't come to visit me, then I

might not get to see you... and, as much as it's possible, I need you to

understand me.

Authored by Bek Oberin

Hope this helps.

Love,

Peggy

[Guest guest]

Shoot!! I think i am getting more and more

frustrated...i have been drinking water

...alot...but i have the swelling in feet and legs

and of late i suspect in abdomen and liver side

feeling pain where didnt before. Maybe i am doing

things all wrong...i think i am going to give

someone a call here on Monday ...doctor/nurse

whoever will answer my call and set up

appointment to discuss all questions i have...i

have one set up already but isnt til end of feb

to ck on progress of the combo...started it in

November and then not sceduled for a follow upp

with GI til end of Feb...more i think about it i

may have to find anohter doctor even is from out

of town..thanks for listening to my ranting

....and virginia...it is our kids that do keep us

going many times...just wish could get dau to

understand how i am feeling...she was kind of

brainwashed by my hus...soon to be ex...that i am

just faking most of this...he believes different

now but damage was done with dau and is at

difficult age...12..and think she may just be in

denial too...anyway ...i have had trouble keeping

up with all the email but it is great infoo from

people that count...those fellow survivors...yes,

survivors ....LOL

Dawn

--- Imtiaz Qazi <isqazi@...> wrote:

> I love water, but I am fluid restricted. I can

> only have 1500cc of liquid a

> day. I am taking diuretics. I had alot of

> swelling in my legs and feet and

> ascites(fluid in abdominal cavity). I am at the

> end stages of this liver

> disease. I hate having this cryptogenic

> cirrhosis. I am one of those that

> they just don't know what caused the liver

> damage. I am going to be fine.

> My children give me lots of strength. My little

> 11 year old multihandicapped

> cerebral palsy is a fighter. If she can be

> happy and content, then I should

> be too. My 8 year old son is always telling me

> that he prayed and God would

> make me a new liver. I thought that was so

> precious. I thought I let you

> know that they both had their birthday today

> (Jan. 23rd). Hope I didn't

> bore you, but I love my little ones. Thank you

> for you kindness and being

> there.

>

> Take care and God bless,

> Your in my prayers,

> Virginia

>

> Curlykew wrote:

>

> > From: Curlykew <curlykew12@...>

> >

> > I'm not a doctor, nor do i have good

> > communications with my GI, but i did have

> that

> > memory stuff. I called it " swimmy head " .

> Trouble

> > concentrating. But just recently did realize

> I

> > haven'g felt that way in a long time. Not

> sure

> > why but did start drinking lots and lots of

> water

> > and started the combo treatment.

> >>

=====

My message to you: Don't worry, be happy!!

Love to hear from YOU!

Dawn

__________________________________________________

[Guest guest]

Dear Peggy,

I read that letter once before and forwarded it to all my friends and

family. I think it was very well stated. Thank you for sharing it again.

Love,

Bren

[Guest guest]

Dear Peggy,

I read that letter once before and forwarded it to all my friends and

family. I think it was very well stated. Thank you for sharing it again.

Love,

Bren

[Guest guest]

Dear Peggy,

I read that letter once before and forwarded it to all my friends and

family. I think it was very well stated. Thank you for sharing it again.

Love,

Bren

[Guest guest]

Dear Peggy,

I read that letter once before and forwarded it to all my friends and

family. I think it was very well stated. Thank you for sharing it again.

Love,

Bren

[Guest guest]

That is an excellent letter and I found one just like it (or the same one

forgot hey I'm a hepper! haha) and sent it to family and friends. Slowly my

sisters are learning about hep. I don't send them a lot of technical stuff.

But a letter like that... or something with a real personal or personable

story I do send them to read. My sis had a hard time understanding why I

didn't just " pop " over to her house (an hour and a half drive one way, lotsa

Dallas traffic between us) and visit on the weekends. Now she understands a

bit more. It takes time. Be patient with family and friends

alley/

ICQ 12631861

alleypat@... <mailto:alleypat@...>

http://micromagic.net/~alleypat/liver

[Guest guest]

That is an excellent letter and I found one just like it (or the same one

forgot hey I'm a hepper! haha) and sent it to family and friends. Slowly my

sisters are learning about hep. I don't send them a lot of technical stuff.

But a letter like that... or something with a real personal or personable

story I do send them to read. My sis had a hard time understanding why I

didn't just " pop " over to her house (an hour and a half drive one way, lotsa

Dallas traffic between us) and visit on the weekends. Now she understands a

bit more. It takes time. Be patient with family and friends

alley/

ICQ 12631861

alleypat@... <mailto:alleypat@...>

http://micromagic.net/~alleypat/liver

[Guest guest]

You know..........your note really touched me. I have rec'd in my email the

most beautiful message about 'mothers'. I would LOve to send it to you. My

email is mzgee1@... if you want u can send me yours and I will get

it out to you. Sending a pray heavenward for you and your children. much

love, gail

[Guest guest]

Hi ,

After reading so much about memory loss here I'm wondering if my memory-loss

and swimmy-headedness isn't a symptom of HCV. I've been having alot of it

lately. Are you on any treatment for your HCV or are you just treating it

yourself and through a naturopath? I havn't started treatment yet. I also

assume I contracted some 30yrs. ago. Dee Dee

>From: " " <wmm@...>

>Reply-Hepatitis Conelist

><Hepatitis Conelist>

>Subject: Re: Memory loss

>Date: Sun, 23 Jan 2000 16:42:17 -0800

>

>

> > > From: Curlykew <curlykew12@...>

> > >

> > > I'm not a doctor, nor do i have good

> > > communications with my GI, but i did have that

> > > memory stuff. I called it " swimmy head " . Trouble

> > > concentrating. But just recently did realize I

> > > haven'g felt that way in a long time. Not sure

> > > why but did start drinking lots and lots of water

> > > and started the combo treatment.

>

>Hi list,

> As a 53 year old female who has had HCV for nearly 30 years, I have some

>experience with memory loss and " brain fog " . It surprised me to discover

>that stress has a great deal to do with how the mind copes & remembers.

>Once

>I was diagnosed in Feb.99 I could take steps to control my health. Reducing

>stress as much as possible helps. I take Coenzyme Q10, 60 mg daily. It is

>said to enhance tissue oxygenation & counteract immunosuppression.Anything

>that you can do to enhance general health & well being will help the body

>function as best it can.Consulting with your doctor,naturopath etc. on how

>to achieve this is always advisable.Then hopefully the brain & immune

>system

>can do their job & keep us going.

>

>wmm@...

>BC. Canada

>

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Dear Dee Dee,

Brain fog is synonymous with HCV. Whether on treatment or not. Although I

did find it worse while I was on the Intron A.

Love,

Bren

[Guest guest]

Dear Florence,

Brain fog exists in EVERYONE I know who has HCV. And trust me, only 1 is at

end stage liver disease out of the over 100 I know, both off and on line.

Again, on treatment it's worse but alot of it clears after treatment stops.

Love,

Bren

[Guest guest]

Dear Florence,

Brain fog exists in EVERYONE I know who has HCV. And trust me, only 1 is at

end stage liver disease out of the over 100 I know, both off and on line.

Again, on treatment it's worse but alot of it clears after treatment stops.

Love,

Bren

[Guest guest]

> From: " Dee Dee " <deetaylor76@...>

>

> Hi ,

> After reading so much about memory loss here I'm wondering if my

memory-loss

> and swimmy-headedness isn't a symptom of HCV. I've been having alot of it

> lately. Are you on any treatment for your HCV or are you just treating it

> yourself and through a naturopath? I havn't started treatment yet. I

also

> assume I contracted some 30yrs. ago. Dee Dee

> Hi Dee Dee,

I hardly have any memory loss symptoms now. I stopped work last March &

devoted full time to my health. As time went by stress lessened and my mind

cleared. I think many factors come into memory loss..fluctuating hormones,

chronic illness & the fear that comes when we first are diagnosed. If I were

to try & work at the level I was before, the stress & brain fog symptoms

would return and my system would break down. As time goes on I hope to be

able to be more active., although it will be within the parameters that the

body can handle & still leave energy to deal with the virus.

I am not on any treatment for HCV. Have seen a hepatologist,naturopath & had

ultrasound. Significant changes to my health began when I began following

the ER4YT food guidelines recommended by my naturopath.There is info on that

at www.dadamo.com. For now I am going for liver enzyme tests once every 6

months for a year then a follow up visit to hepatologist. Had enzyme tests

once a month for 6 months before seeing hepatologist.AST/ALT slightly

elevated but not flutuating.

How are you feeling generally Dee? Are you considering treatment?

Is there anyone else on the list that has had HCV for many years and not

proceded with combo treatments?

B.C. Canada

icq41748034(Mollie)

[Guest guest]

I get it too and no way am I anywhere near end stage. I am only Stage

2......Perhaps the medical field needs to re-acess our symptoms. If more

than two people share the same symptoms ?!?!?!?!

Florence

> Dee Dee.. they say brain fog is only for those with end stage liver

disease,

> but I swear, I got it too. I lose concentration easily, and have very

little

> ability to stay focused. Maybe it's just the overall lack of energy that

> causes this. dunno.

>

> alley/

[Guest guest]

I get it too and no way am I anywhere near end stage. I am only Stage

2......Perhaps the medical field needs to re-acess our symptoms. If more

than two people share the same symptoms ?!?!?!?!

Florence

> Dee Dee.. they say brain fog is only for those with end stage liver

disease,

> but I swear, I got it too. I lose concentration easily, and have very

little

> ability to stay focused. Maybe it's just the overall lack of energy that

> causes this. dunno.

>

> alley/

[Guest guest]

Bren,

I totally agree with you. I hope it does clear up after treatment, Bren,

as I have been blaming it on my thyroid for years.

Florence

Dear Florence,

> Brain fog exists in EVERYONE I know who has HCV. And trust me, only 1 is

at

> end stage liver disease out of the over 100 I know, both off and on line.

> Again, on treatment it's worse but alot of it clears after treatment

stops.

> Love,

> Bren

>

[Guest guest]

Bren,

I totally agree with you. I hope it does clear up after treatment, Bren,

as I have been blaming it on my thyroid for years.

Florence

Dear Florence,

> Brain fog exists in EVERYONE I know who has HCV. And trust me, only 1 is

at

> end stage liver disease out of the over 100 I know, both off and on line.

> Again, on treatment it's worse but alot of it clears after treatment

stops.

> Love,

> Bren

>

[Guest guest]

Dee Dee.. they say brain fog is only for those with end stage liver disease,

but I swear, I got it too. I lose concentration easily, and have very little

ability to stay focused. Maybe it's just the overall lack of energy that

causes this. dunno.

alley/

ICQ 12631861

alleypat@... <mailto:alleypat@...>

http://www.mailbonus.com/index.cfm?ref=alleypatflash (DOT) net

[Guest guest]

Wendi said <<Is there anyone else on the list that has had HCV for many

years and notproceded with combo treatments?>>

Yep. I have known about my hep C for about 10 years. Diagnosed in 89 when

donating blood. Confirmed at doctors office. Nothing has been done since.

Then I had insurance, now I don't. Now that I know that there are things I

need like PCR, genotype and biopsy. But one step at a time. I am unemployed,

no insurance etc. Interviewed Friday so wish me luck! And then still, I am

not sure I'll do treatment. A lot will depend on the outcome of the biopsy.

alley/

ICQ 12631861

alleypat@... <mailto:alleypat@...>

[Guest guest]

Wendi said <<Is there anyone else on the list that has had HCV for many

years and notproceded with combo treatments?>>

Yep. I have known about my hep C for about 10 years. Diagnosed in 89 when

donating blood. Confirmed at doctors office. Nothing has been done since.

Then I had insurance, now I don't. Now that I know that there are things I

need like PCR, genotype and biopsy. But one step at a time. I am unemployed,

no insurance etc. Interviewed Friday so wish me luck! And then still, I am

not sure I'll do treatment. A lot will depend on the outcome of the biopsy.

alley/

ICQ 12631861

alleypat@... <mailto:alleypat@...>

[Guest guest]

Hi ,

I'm surprised to hear you havn't sought out a second opinion. Do you feel

you are getting the right treatment? Idle time.....scary. Has your Dr.

suggested a biposy? I'm having a hard time waiting. My appt. is Feb. 11th.

with my PCP who suggested me to wait till March to have more blood work

done. I'm going in early to get Hep A & B vaccines and see about getting on

estrogen therpy. The article on postmenapausal sounds like it might help to

have successful results with HCV treatment. I really want to know what is

going on with my liver so maybe I can speed up the second blood work and go

on to having the biopsy. I've been feeling good. Only syptoms are the

swimmy head..confusion....dizziness....I'm not tired or have any of the

other symptons I've read about. I work full time and have two highschool

children. Yes I suppose I'll go on treatment if the Hepatoligist beleives

it to be the best thing for me. My work isn't physically demanding which I

am thankful for. Treatment won't be an easy thing to go through but if

everyone else can do it .....I can. My thoughts and prayers are with

everyone now on treatment and thanks for sharing and letting me voice my

concerns.....Dee Dee

>From: " " <wmm@...>

>Reply-Hepatitis Conelist

><Hepatitis Conelist>

>Subject: Re: Memory loss

>Date: Sat, 29 Jan 2000 15:31:30 -0800

>

>

>

>

>

> > From: " Dee Dee " <deetaylor76@...>

> >

> > Hi ,

> > After reading so much about memory loss here I'm wondering if my

>memory-loss

> > and swimmy-headedness isn't a symptom of HCV. I've been having alot of

>it

> > lately. Are you on any treatment for your HCV or are you just treating

>it

> > yourself and through a naturopath? I havn't started treatment yet. I

>also

> > assume I contracted some 30yrs. ago. Dee Dee

>

>

> > Hi Dee Dee,

> I hardly have any memory loss symptoms now. I stopped work last March &

>devoted full time to my health. As time went by stress lessened and my mind

>cleared. I think many factors come into memory loss..fluctuating hormones,

>chronic illness & the fear that comes when we first are diagnosed. If I

>were

>to try & work at the level I was before, the stress & brain fog symptoms

>would return and my system would break down. As time goes on I hope to be

>able to be more active., although it will be within the parameters that the

>body can handle & still leave energy to deal with the virus.

>I am not on any treatment for HCV. Have seen a hepatologist,naturopath &

>had

>ultrasound. Significant changes to my health began when I began following

>the ER4YT food guidelines recommended by my naturopath.There is info on

>that

>at www.dadamo.com. For now I am going for liver enzyme tests once every 6

>months for a year then a follow up visit to hepatologist. Had enzyme tests

>once a month for 6 months before seeing hepatologist.AST/ALT slightly

>elevated but not flutuating.

>

>How are you feeling generally Dee? Are you considering treatment?

>

>Is there anyone else on the list that has had HCV for many years and not

>proceded with combo treatments?

>

>

>B.C. Canada

>icq41748034(Mollie)

>

>

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com