He'll probably die of something else and won't have any symptoms. Hep C is
not a death sentence. If he drinks alcohol, though, he should stop as it
accelerates the virus' work. If your doctor told you not to research it on
the Net, perhaps you should consider getting another doctor.

Being asymptomatic is great, but the virus is still working its nasty deeds
on your hubbys body.
TX has been one of the most difficult things I have gone through in my life,
but if it means that I can eliminate the virus its worth it.
Keep a level head,
Julie

Well, reading about what can happen with Hep C can be frightening.
Perhaps unnecessarily so since often people get by ok without
treatment.  I like to know what's going on myself even if it means
reading some scary stuff.  But your doctor is right about wanting you
be calm about this.  You'll need to find out about the health of his
liver.  Whether there is any damage.  They usually do that by biopsy.
Some doctors say you can skip that if you have one of the "highly
curable" genotypes which would mean type 2 or 3 which respond well to
treatment.  But I think it is best to know how your liver is so you
can make an informed decision whether or not to treat.  There are some
risks involved with treatment as well as in not treating.  

People often don't show symptoms until they have advanced liver
disease and many people never progress to that.  So finding out about
the health of his liver may offer some clues.  However, some people
develop symptoms like fatigue and other things not associated with
advanced liver disease.  I don't think that can be predicted.  

It is normal to become upset upon learning you or someone you love
have an illness like this.  But remember that people can have this
disease for 20 - 30 years and have no liver damage.  Find out the lab
results.  An ultrasound and biopsy are done typically to see how the
liver and abdomen are doing.  They will probably measure the viral
load (how many virii per ml of blood) to get a baseline to measure
improvement if treatment is opted for.  And they run blood cell
counts, iron/ferratin, and a host of stuff to access his general
health and see if treatment or biopsy might not be indicated.

Try to take it easy and let everyone know how things go.

Don

With all due respect to your doctor, is he a GP, a gastro, or a hepologist?
Did he tell you which genotype your husband has?  If not, he doesn't know if
it's "highly curable" or not.  Did this doctor immediately take your husband
off the Lipitor (I'm really curious about that one)?

I disagree with not doing research on the Internet.  I think that's kind of
a slap in the face. Yes, there's a lot of misinformation out there, but if
you're intelligent enough to ask here, you're certainly intelligent enough
to find reputable Web sites and evaluate the information there.

What does your doctor consider to be "asymptomatic'?  I've had this disease
since 1974, and I've been fatigued for so long I didn't know I was fatigued.
I thought I was a low-energy type and couldn't understand why everyone ran
circles around me.  I've also been very forgetful for quite a few years and
just labelled myself as scatterbrained.  That pain in my side?  Hmmm, must
have pulled something again.  The effects of the disease can be mild enough
that you can attribute them to any number of things.  I don't feel "sick"
now, I just understand why I feel the way I do.

There's no way of knowing what's really going on without a biopsy.  That
will determine the extent of his liver damage (if any).  I don't think I
like your doctor very much, to tell you the truth.

There's nothing wrong with researching on the net. It's a library. I
never tried an alternative tx based on what I read on the net, but I've
learned a hell of a lot more from my own research than I ever did from a
doctor. When I was first diagnosed with HCV, I knew practically nothing
about the disease. The way a doctor talks to you when he/she knows
this-- compared to the way they talk to you when they realize you have
been researching is like the difference between night and day. brian

When I found out I had Hep C I thought I was going to die.  Turns out I
got it wrong.

I went through 24 weeks of Peg-Interferon and Ribavirin and I was on the
worse range of side-effects but I got through it and it seems to have
worked.

The best use of the internet and this group is (I think) to be able to
have some idea of what the terminology is and what questions to ask.

When I started to do research I learned:
- there's a lot that is supposition, and based on small studies, and
shots-in-the-dark that worked before so have to be considered as "what
works" until there's more refinement
- if anyone says "this is certain" then it's fair to question them what
they're basing it on
- as you would imagine, for a disease that can lay dormant for so many
years, there is a very wide range of how sick you can get.  It's likely
that more people have it with no noticeable symptoms because most people
don't get tested unless there's a problem.

From what I've seen:

The different genotypes (1a, 1b, 2, 3) seem to have different levels of
tenacity with regards to treatment.  That translates to a prediction of
either 24 weeks or 48 weeks of treatment.  Again, that's based on what
has worked in the past.  Studies are ongoing to see if some genotypes
respond to less than 24 weeks.  Are you sure your doctor said 18 months
and not 18 weeks?  

There seems to be a correlation between earlier response to treatment
(as in a certain drop in the viral load, or undetectable viral load) and
a successful outcome but there are people here who have been exceptions
to that rule.  Some doctors (and insurance companies) believe that if
you don't get that drop in the first 12 weeks then the treatment will
not work for you.  The success percentages you hear are the total of
people who try treatment, so if you get that drop in those first 12
weeks then your chances of finishing successfully go up quite a bit.

People's response to treatment varies hugely.  In this group are a
number of people who are on treatment and work out, swim, go to work,
etc.  Other people have developed medical conditions that cause them to
have to stop treatment.  I don't know that there's any way to predict
his response.  It might be difficult to maintain a balanced perspective
but I think that once you know if he's going to go on treatment and for
how long, you should listen to people's experiences and be prepared -
not expect, but be prepared - for what might happen.  In my case I
wasn't able to work much but I didn't have medical symptoms.  I did get
a bit crazy and took things for that but I got through it without too
much effort.

I don't think so.  As other people have said, the main driver seems to
be if there is liver damage.  If there isn't then it's an evaluation of
whether he wants to put off treatment until there are (hopefully) easier
treatments.  I didn't have that option so I can't tell you how you would
decide something like that.

That sounds pretty bogus, I don't think your doc knows what he's talking
about - unless you misunderstood, and he meant weeks. The "highly
curable" genotypes 2 and 3 require 24 weeks of treatment, and some docs
are testing shorter treatments (down to 14 weeks). The hard to cure
types 1 and 4 need 48 weeks. 18 months would be an extended treatment
only for those who have problems clearing.

That's good, you'll probably learn a lot more about his status by then.
Did they schedule a biopsy?

No need to be devastated, it's not a death sentence. But it's not to be
taken lightly, either.

"Asymptomatic" is a rather nonsensical term, since some symptoms are
hard to gauge, and he did have elevated LFTs, apparently. Any idea how
long he's had it (risk factors in the past like blood transfusions or
drug use)? As a rough measure, most people have few, if any, problems in
the first 15-25 years after infection (which, unfortunately, is usually
not the same as after diagnosis). That's not a hard and fast rule, just
an average. After that, things tend to go downhill a bit faster, but
there are several factors, some of them genetic, that influence
progression. Some people never have major symptoms and die from old age
instead of HCV. Some people (especially if they use alcohol) become
cirrhotic relatively quickly. Only a biopsy will tell for sure what the
state of your husband's liver is, the absence of symptoms doesn't tell
you much.

Thomas

Highly curable ...and 18 months???  that can't be right.  There are several
"genotypes"  1, 2, 3 and now I see some sites stating type 4.  Common
belief is that type 1 is more resistant to the treatment than 2 or 3.  Type
1
usually requires 48 weeks of treatment...to start with.  Types 2 and 3
generally are given an initial treatment of 24 weeks (although some are
now suggesting longer for type 3).  I just can't imagine why 18 months
unless it's not the common "combo" therapy.

Well...I guess if the doctor knows you would stress out unneccessarily over
any information you got on the net that makes sense.  When I was first
diagnosed there wasn't a lot of positive info out there.  Seems like all
the cites were talking about people who were already feeling the effects
of liver damage.  I had it for at least 25 years when I was diagnosed and
my biopsy showed no damage.   Now though I think there is a lot more
positive information out there.  More and more people are being
diagnosed before liver damage becomes a real problem so the information
is a little more diverse.

Mine also was found after a routine blood test showed high liver enzymes.
I didn't feel any symptoms that I attributed to the disease.  I waited
another
2 years before doing treatment and never did feel anything that I thought
might be a symptom of Hep C.  Some will say you HAVE to treat it.
Personally I don't think they know how long you can go on with the
disease before it starts doing damage to the liver...and that's where the
real concern lies.  I decided not to be one of the guinea pigs that "prove"
you can have it forever <G>...just in case.  Still...if his biopsy comes
back with no damage he could put off treatment until he feels more
physically, financially and emotionally ready.  My doc just monitored
my liver functions and did a viral load check every 6 months to make
sure it wasn't suddenly progressing.

AG

On Thu, 10 Feb 2005 16:25:40 GMT, "Betsy Ross"
<betsyross2004@earthlink.net>, in message ID
<8WLOd.4935$mG6.4099@newsread1.news.pas.earthlink.net>, in the
newsgroup alt.support.hepatitis-c wrote:

Well he's a prat then.  Some of us need the internet to check that the
less competent doctors are not f.cking with our lives.  I had to
change a few things because of what I learned on the net.  Nothing
life threatening but the system (not the doctor personally) was making
a bit of a mess of things for me.  Because of what I learned here, I
was able to prevent them putting me to additional inconvenience.

I have had mine since 1978 and didn't find out until 2000 accidentially
with a yearly physcial

I went to right to the internet, there are many heapful site. wedmd.com
was the most reiable.

18 months of treatment. I don't know.  I had one Dr. first that didn't
bother to determine what geno type I was and I went on treatment after 7
months took me off. Didn't bother even to do a liver bio to see what the
damage was.  He said that my viral count was low so I had a 75% chance of
being cured.  My geno type was 1b the most resistance. Get a second
opinion. and Surf the net.   Knowledge is the key here

This doesn't make sense. The (geno)types of hep c that have the best chance
(hard to believe a doctor would say "highly curable") of being beaten are 2
and 3. Normally treatment for genotypes 2 and 3 is six months. Genotypes 1
and 4, which aren't as responsive to treatment, generally are treated for a
year.

Additional tests are being

Find another doctor, one who doesn't encourage ignorance.

He knows I have

But I would appreciate some sympathetic,

By all means, do some research on the internet, and ask questions here.
You'll get some silliness, and some stupidity, but most folks here are very
knowledgeable and very supportive. All the best,

Waterspider

Sounds like your husbands doc. is not a specialist in liver disease and he
is referring your husband to a liver specialist.  Therefore, he might not
really know a lot about liver disease.  Family docs can't know about
everything, and liver disease is a specialist area.  Therefore, the referral
to a clinic that can do more for your husband and have all the latest
information.   People that are more knowledgeable about their disease are
more proactive in their own care.  This does disconcert some doctors and
gives them added headaches in trying to deal with someone that is panicking
over having just part of the picture.

This is a good site.  Caring people that have researched the information,
and/or gone thru the treatment, or are going thru the treatment.....or
thinking about going thru the treatment.   Some have decided to put
treatment off until something easier comes across.  You and your husband
need as much information about his condition as you can get.  Your
hepatologist at the liver clinic will order these test, if present doc.
already hasn't.    Viral type, that is whether it is genotype 1, 2, 3, etc.,
viral load, that is how much virus per ml of blood.
A biopsy will indicate how much, if any damage, has already occured with the
liver.

Don't get panicky.  someone already said most people die of other things.
The fact that he isn't having any identified symptoms at this time is good.
Some of us opt for treatment because of symptoms.  I did....and
I'm glad I went thru it.  It was tough, but this group was a
great help in keeping me focused and making me feel like
I wasn't alone in this.

It is great for your husband to have someone so devoted to him like you are.
That makes treatment more bareable, I think, for those that have a good
mate.
Keep coming back.  If you do get panicky, this group is great for putting
things in to perspective.
Susie

On Thu, 10 Feb 2005 16:25:40 GMT in
<8WLOd.4935$mG6.4099@newsread1.news.pas.earthlink.net>
"Betsy Ross" <betsyross2004@earthlink.net> said this:

I'm reminded od Clatoo in "The Day the Earth Stood Still" where he
said that life could be sustained "for a time".  My mother in law has
HCV and does not plan treatment; however, she's 88 years old and
probably contracted it towards the end of her nursing career.

WRT the treatment, I'm just wrapping up a 48 week ride in which I have
seen relatively light side effects.  It's not thus for all.

In general, the idea is: don't jump to conclusions.  Wait for the
biopsy.  If I'm going to go into panic mode, at least I want some
accurate information about which to panic.

While I acknowledge that the false positive rate is quite low on
modern tests, any doctor who says that you should *not* educate
yourselves on and take responsibility for your own medical decisions
may very well have been reading your postal code instead of the lab
results.

Good luck with the specialist.

Waldron