Re: New to all this

[Guest guest]

Ric

You mention that they can give you something for brain fog. What is it. I

have been off tx for a year and 2 months and the brain farts (fog) still comes

and goes. And for the side effect of the tx some, don't ever go away.

[Guest guest]

Hi Pat and welcome to our group.

Curiously enough, viral load doesn't have anything to do with the

severity of the disease or the speed with which it progresses.

As far as I'm concerned, the only way to treat hep C, at least right

now, is those nasty drugs. Be sure, no, make that damn sure, your

doctor is willing to treat the side effects very aggressively, if

necessary. They suck.

The liver does have the ability to repair itself but, given that you are

at stage 1, you have plenty of liver.

Doug

Pat wrote:

>

> I am 1a, viral load 777,000....grade 2, stage 1.

>

> My questions are...I know this is a weird unpredictable disease but I

> wonder why I am so sick with such low viral load, etc. I have no

> energy, lots of aches and pains, abdominal pain,headaches,

> nausea..... If I do the tx and clear does this mean that damage can

> reverse itself and I can have a healthy liver again?

>

> Not looking forward to putting nasty drugs in my body but this seems

> to be the only way to kill this ?

[Guest guest]

for the record, just what is the specific clinical significance of one's

viral load.?

In a message dated 1/5/2005 7:10:11 A.M. Eastern Standard Time,

djnichol@... writes:

Hi Pat and welcome to our group.

Curiously enough, viral load doesn't have anything to do with the

severity of the disease or the speed with which it progresses.

As far as I'm concerned, the only way to treat hep C, at least right

now, is those nasty drugs. Be sure, no, make that damn sure, your

doctor is willing to treat the side effects very aggressively, if

necessary. They suck.

The liver does have the ability to repair itself but, given that you are

at stage 1, you have plenty of liver.

Doug

Pat wrote:

>

> I am 1a, viral load 777,000....grade 2, stage 1.

>

> My questions are...I know this is a weird unpredictable disease but I

> wonder why I am so sick with such low viral load, etc. I have no

> energy, lots of aches and pains, abdominal pain,headaches,

> nausea..... If I do the tx and clear does this mean that damage can

> reverse itself and I can have a healthy liver again?

>

> Not looking forward to putting nasty drugs in my body but this seems

> to be the only way to kill this ?

[Guest guest]

Hi Pat. Why put nasty drugs, and they are, in your system if you already feel

like crap?.. Your doc should be helping you with the way your feeling now. It's

true the majority of the working on yourself stuff is up to you. Your doctor

can perscribe things for pain, nausea, brain fog. Not that I want you to get on

lots of pills but somrthings can help. We can help you with finding the right

information on diet changes and lifestyle changes that you need to better cope

with symptoms. and don't fret about the ins. co. Their profits are in no

danger..........ric

[Guest guest]

Well Eddie, I kinda like you foggy. Your jokes are the best. If your still

dealing with the dragon, not sure if you cleared. Have your protien and amonia

levels checked. If they are elevated, that could be the problem. Ask for

laculose or enulose---generic version. It will help. It has a down side, the

laxitive effect. so use with caution.... or

take a daily multi vitamin, get plenty of restful sleep, and try not to get

any older. your friend....ric

[Guest guest]

Hey Pat, I'm a Pat too

I'm stage 1 also. I feel like crap too. I have my good days and bad days.

I've learned a lot about hep and health and I think I'm much better able to deal

with it now, knowing how to eat right, pace myself, sleep better and know to ask

my doc for the meds I need if I need them. Sometimes, a good night's sleep

(continuously) can work miracles esp for us heppers. I have sleep meds but

don't take them all the time. I have pain pills, and only take those on my bad

days. I have muscle relaxers, antidepressants (which with the right one, gives

me more energy), and such.

Pacing I think is the most difficult part of having a chronic health condition.

We can't just up and go 90 miles an hour when we want to. We have to think of

later, tomorrow, the next day, when we are going to pay for that spurt of

energy. I can't take off and drive down to Houston (5 hour drive) by myself

anymore because I know I'll get too tired and just poop out. (I like to go see

my relatives) I have to plan things a little better, buy better food, and just

plain, live a better life.

If you can rest as much as you can, de-stress, drink a lot of water, vitamins

with no iron, in a couple of months, you will probably start to feel better.

Remember, our liver is over burdened and it's not going to bounce back like it

used to. It will take longer and it might not even be able to if we don't let

it. We have to give it the chance. When I was dx'd, I spent 3 months at home at

my doc's orders, " bed rest " , until my liver enzymes went to normal. They've

been normal ever since. I never felt normal since, but I felt better after that

3 months than I did before it. I didn't realize how much aspirin I had been

popping trying to keep going at work and at home, just to put in a " normal " day.

Now, I realize, there's nothing " normal " about a heppers day. We make normal

different every day. We definite it each minute. I can't keep up with my

family and friends, running off to shopping malls, dashing off to early morning

breakfasts with sisters like I used to. In fact, when I'm working (I'm

unemployed right now), work is all I can do. My whole focus of my life is on

what I need to do to rest enough to be able to make it thru one more day of

work. Now I'm job hunting again, and I'm not looking forward to going through

that again, but it's necessary, and like somebody once said, if you wanted fair,

you're on the wrong planet.

Nice to meet you Relax, find your pace, make the world come to you

Alley (as in nickname " alleypat " )

Grand Prairie, Tx

BTW, my opinion, stage 1 shouldn't be doing tx u nless something really special

is going on. But that's just my take on it.

[Guest guest]

> >

> > I am 1a, viral load 777,000....grade 2, stage 1.

> >

> > My questions are...I know this is a weird

> unpredictable disease but I

> > wonder why I am so sick with such low viral

> load, etc. I have no

> > energy, lots of aches and pains, abdominal

> pain,headaches,

> > nausea..... If I do the tx and clear does this

> mean that damage can

> > reverse itself and I can have a healthy liver

> again?

> >

> > Not looking forward to putting nasty drugs in my

> body but this seems

> > to be the only way to kill this ?

>

>

>

[Guest guest]

Thanks for the welcome and all the responses.

I have been wondering how the tx will affect me if I already feel

like CRAP ! But at the same time, isn't this the only way to get rid

of the virus so I don't feel like crap ?? Is this a no win situation

or is there a light at the end of tunnel ??

If I don't do tx then won't the damamge to my liver get worse over

the years ?

Anyone have suggestions of stuff to avoid eating and what really

helps the liver.....and I know NO ALCOHOL which is not a problem for

me unless I go out to eat but I don't have the energy for that

anymore *L*

Pat

> Hey Pat, I'm a Pat too

>

> I'm stage 1 also. I feel like crap too. I have my good days and

bad days. I've learned a lot about hep and health and I think I'm

much better able to deal with it now, knowing how to eat right, pace

myself, sleep better and know to ask my doc for the meds I need if I

need them. Sometimes, a good night's sleep (continuously) can work

miracles esp for us heppers. I have sleep meds but don't take them

all the time. I have pain pills, and only take those on my bad

days. I have muscle relaxers, antidepressants (which with the right

one, gives me more energy), and such.

>

> Pacing I think is the most difficult part of having a chronic

health condition. We can't just up and go 90 miles an hour when we

want to. We have to think of later, tomorrow, the next day, when we

are going to pay for that spurt of energy. I can't take off and

drive down to Houston (5 hour drive) by myself anymore because I know

I'll get too tired and just poop out. (I like to go see my

relatives) I have to plan things a little better, buy better food,

and just plain, live a better life.

>

> If you can rest as much as you can, de-stress, drink a lot of

water, vitamins with no iron, in a couple of months, you will

probably start to feel better.

>

> Remember, our liver is over burdened and it's not going to bounce

back like it used to. It will take longer and it might not even be

able to if we don't let it. We have to give it the chance. When I

was dx'd, I spent 3 months at home at my doc's orders, " bed rest " ,

until my liver enzymes went to normal. They've been normal ever

since. I never felt normal since, but I felt better after that 3

months than I did before it. I didn't realize how much aspirin I had

been popping trying to keep going at work and at home, just to put in

a " normal " day.

>

> Now, I realize, there's nothing " normal " about a heppers day. We

make normal different every day. We definite it each minute. I

can't keep up with my family and friends, running off to shopping

malls, dashing off to early morning breakfasts with sisters like I

used to. In fact, when I'm working (I'm unemployed right now), work

is all I can do. My whole focus of my life is on what I need to do

to rest enough to be able to make it thru one more day of work. Now

I'm job hunting again, and I'm not looking forward to going through

that again, but it's necessary, and like somebody once said, if you

wanted fair, you're on the wrong planet.

>

> Nice to meet you Relax, find your pace, make the world come to

you

>

> Alley (as in nickname " alleypat " )

> Grand Prairie, Tx

>

> BTW, my opinion, stage 1 shouldn't be doing tx u nless something

really special is going on. But that's just my take on it.

>

>

[Guest guest]

Thanks Ric...

Pat

> Pat, these two sites should help a little toward your

education......your friend.......ric

> http://www.hepcbc.ca/FAQv5.htm

> http://www.hcvadvocate.org/hepatitis/factsheets.asp

>

>

>

>

>

[Guest guest]

you have answered my question. thanks.

Bob Drury

[Guest guest]

Also remember thay HCV is an infection that your immune system is attacking. I

would think that the higher the PCR, the harder your little body defenders are

working. which means your immune system is becomming more and more compromised

making you more susceptible to a host of other yuccky things...........ric

[Guest guest]

WOW, thanks Alley for explaining things so well. I am still trying to

decide whether to do tx. I am 1a with " only " stage 1 damage. If I

felt ok I would NOT do tx but the fact that I am so sick is making me

think I should do tx. Then again I don't want nasty drugs in my

system if there isn't much chance they will help.

Does everyone go thru all this confusion ?? Somes days it is just too

much to try to figure out what to do. My appnt with the gastro to

talk to her about tx and my test results is Jan 19th.

Are there certain foods that should be avoided ? My appetite has gone

out the window but when I do eat I want to eat stuff that will not

stress out my liver.

Thanks for the support...........we all need it !

Pat

> Pat said <<isn't this the only way to get rid

> of the virus so I don't feel like crap ?? Is this a no win

situation

> or is there a light at the end of tunnel ?? >>

>

> OK who told you you'd feel better when you get rid of the virus?

LOL The goal is to feel better, and the hope is, and most people do.

Just don't expect too much. Some don't feel better. Some feel worse

after treatment.

>

> What genotype are you? If you're a 1, then you still have less than

a 50% chance at sustaining a nondetected pcr. For many, that's worth

it.

>

> <<If I don't do tx then won't the damamge to my liver get worse

over

> the years ? >>

>

> Yes. Over time. New therapies also will be developed. They are

working on a once a month interferon shot, instead of once a week.

Etc.

>

> Each stage takes decades, give or take, to reach the next stage. If

you are stage one, then figure 20 years maybe till stage 2, ten to

twenty years till stage 3, etc.

>

> In 20 years, I can promise you, treatment will be much improved and

the odds will be much more in your favor with fewer permanent side

effects.

>

> I'm not saying don't ever do treatment. I'm saying weigh your

position of where you are now.

>

> People lose their jobs, homes, families, even their lives, doing

treatment. This is not like pantyhose where one size fits all.

You have to decide when it's right for you, if it's right for you,

etc.

>

> Personally, I won't have to do treatment again (and I won't do it

again). Treatment triggered fibromyalgia and chronic fatigue, turned

my immune system inside out, and I'm still recovering 4 years later.

I felt worse after treatment than before. I cleared fast and while I

was on treatment, but relapsed. I had an easy time on treatment. I

had all the factors going for me. What was different? I am geno 1b,

a very stubborn genotype, and my liver was in great shape. My gastro

advised against doing treatment at this time. He said treatment could

be worse than the hep at this point. I didn't listen. I wanted to

get rid of the virus.

>

> Now, I still have the virus, and I have more chronic health

problems.

>

> Take your situation, evaluate it. We can tell you what to do or

not to do. We can try to show some alternative things, what happened

to us, and maybe give you a balanced look at the whole picture.

>

> If you don't clear the first time, your viral load will skyrocket.

If you don't clear a second time, the virus will probably become

treatment resistant. Some treat and clear 3 or more times later.

I'm not poisoning my body that much at this point.

>

> I figure it this way. I'm 50 with stage 1. In 30 years, I'll be

80 with stage 2 or stage 3. In 40 years, I *might* be at stage 4.

I'll be 90 years old.

>

> I think I'll be dead of something else by then, and I don't plan on

it being treatment related

>

> Well, that's my take on it.

>

> Alley

>

>