Re: New here, scared, and can't stop crying my eyes out. :(

February 25, 2007

First off, relax, most people die with hep C not because of it. It

usually takes 20 or 30 years to develop serious damage. The

antibodies are not part of a CBC so you will not see them there. An

antibody test is separate and usually must be requested.

The tests you will get next are the RNA by PCR (viral load) to find

out if you have an active infection. About 15% of patients with

antibodies will be undetectable or have no active infection. The

result will come back as 'copies per IU (International Unit). This

number can be anywhere from a few thousand up into the millions. A

high number does not mean you are more infected or that there is

more liver damage. A genotype will be done at the same time as the

viral load to help determine the effectiviness of treatment should

you decide to follow that route....it's YOUR decision. Genotypes 1a

and 1b are more common in the US and are harder to treat. Genotypes

2 and 3, and all their subgroups, are easier to treat but much less

common. No genotype has proven to cause more damage any quicker

than the others. The specilist may want to do a liver biopsy. This

is the Gold Standard for determining liver damage. The biopsy is

performed as an out-patient and is usually fairly quick with a

minimal amount of discomfort. You will be asked not to lift

anything heavy for a few days afterward.

A diet low in red meats, fats and sugar will help the liver. If you

have an active infection and/or liver damage...NO alcohol!!!

If you need some good sites try:

LeighAnn's at: http://www.geocities.com/1Leighann/

or www.hcvadvocate.org

Glenn

>

> Hello everybody. I just joined this group in hopes of getting

some

> support and information. Please bear with me since I'm sure this

> will be long and rambling.

>

> Today is Sunday. On Friday, my PCP doc

> called to tell me that after having " elevated liver enzymes " that

> they ran a Hep C test for antibodies and it came back " positive "

> or " elevated " or....I was so shocked that I literally couldn't

hear

> much more after this. I am scared and confused and I guess my

> tomorrow since I " ve heard this can take weeks to get back. They

> also want me to have a liver ultrasound. My doctor ran this by

all

> so fast that I couldn't even think of what to ask her. I never

> thought hep c would come out of her mouth, I know absolutely

nothing

> about this disease, and she rushed me off the phone saying " don't

> panic until we do further testing " , " the results could take weeks "

> and other things about seeing a specialist and great treatments

> being available. She even said something about not calling her

> office everyday and that we could sit down in a " few weeks " to

> discuss the outcome....which really made me angry!! Nothing like

> getting brushed off after this kind of news.

>

> A little background: I am a 40 year old woman and feel like I'm

in

> a very low risk group (no IV drugs, no blood transfusions, etc.),

> but I do have a tattoo and have had several body piercings (all

were

> done in the late 90's by what I think were reputable/clean

> parlors). I am a lesbian, although from what I understand, sex is

> not one of the risk factors for hep c. For the life of me, I

can't

> figure out how this could have happened. I guess anything is

> possible and I have read that 30% of people with hep c have no

> clue. I even read on some website that something as innocent as

> handling money that has been contaminated with blood that contains

> hcv and then picking your nose (and breaking blood vessels?) could

> be the culprit. This seems rare, but again, I guess anything is

> possible? When I was younger, I have shared razors with friends

and

> even a toothbrush with an ex-partner! It's just driving me mad

> thinking how this is even possible.

>

> I have spent the entire weekend crying and I feel like it's a

death

> sentence. For days I have been surfing the net and trying to

> educate myself on this

> disease and feel like I have pretty much read all the " basics " .

I'm

> just terrified. I have young children and a loving partner and I

> am just worried and sick to death for their safety. I even

removed

> my toothbrush from our " family toothbrush holder " and just looking

> at my stupid toothbrush singled out made me fall to my knees in

> tears.

>

> The reason for seeing my PCP doctor is because after 2 weeks of

flu-

> like symptoms that weren't going away, my patner finally talked me

> into seeing the doc. I didn't have a sore throat, stuffy/runny

> nose, and a few other symptoms that are flu-like, so I decided to

go

> and get this checked out. I have had a very slight fever for 2

> weeks off and on (it just comes and goes!), feeling

> dizzy/lightheaded, cold/clamy sweating, etc. No pain what-so-ever

> in my right abdomen area either. So, imagine to my surprise when

> the doc phoned me (at 5:30pm no less!) and sprung this news on

me.

> Today is the first day in two weeks that I haven't felt sick, so I

> wonder if these symptoms have simply run their course?

>

> Everything I read about " elevated liver enzymes " PLUS hep C

> antibody " reactions " = CHRONIC HEP C. My doc told me to not panic

> until further testing, but I find it rather odd that I have these

> flu-like symptoms, elevated liver enzymes, AND some sort of

positive

> test to hcv antibodies all in the same week. I'm just terrified

> and was

> hoping to come here for a little reassurance that it's all going

to

> be ok. My partner is wonderful and I know we can get through

this,

> but I just can't continue crying 24/7 and upsetting her and my

> children. I have had recent CBC blood work run (about 5 different

> times over the last 3 or 4 years) and have never had antibodies to

> hcv. Is this something that can lay dormant for that long? Could

I

> have been exposed 20 years ago and recent CBC tests come back non-

> reactive? Or does this mean that I have been recently exposed? I

> honestly think my last CBC blood work was done less than 6 months

> ago and the only thing that showed up was my TSH level being low

and

> I was diagnosed with hypothyroidism. Oddly enough, with my last

CBC

> my TSH level was normal (and I haven't been taking my meds!), but

> now I have elevated liver enzymes. I have also been taking Advil

> like it's candy (800 mg every 6 to 8 hours) because of these flu-

> like symptoms. I was wondering if THAT might be the cause of my

> elevated liver enzymes and it's just a fluke about the hcv

> antibodies? I'm just praying this is a mistake and they were

> looking at the wrong chart or something....but these flu-like

> symptoms have me convinced that I am on a long, hard, rough

journey

> for the rest of my life. I'm preparing to find out the worst news

> possible - that I have some sort of advanced liver damage. I just

> have a hard time believing that this all manifested because I

> thought I had the flu! I also can't believe this is something

that

> has never shown any symptoms until now (unless I was just infected

> recently).

>

> Thanks for listening.

>

February 25, 2007

Oh, I also meant to say that I guess it wasn't the CBC random tests

that have been run. I went through 5 years of IVF (invitro

fertilization) and my reproductive endocrinologist, as part of their

protocol, ran hep tests on me.....all came back negative (I'm

assuming this is just the ELISA antibody test). I have heard that

if you test positive for any hep, some RE's won't do IVF with you

for fear of cross contamination in their embryo cryo-tanks. So, I

know I have had hep tests run on me within the last couple of

years. So, would that mean that I've just recently been exposed?

Wouldn't a hep test have shown SOMETHING if I had the antibodies?

Can it truly just lay dormant and not show up?? I'm so confused.....