New member

[Inge153]

Hi everybody,

I was diagnosed Hep C antibodies positive a short while ago and  have been trying to accept and come to terms with the diagnosis.  I have an appointment with a gastroentorologist next month, and  I've read loads about all the practical things I  can - and must -  do. I think I can handle the practical lifestyle side of it fairly OK. But mentally I am all over the place. Any advice?   Inge153

[Inge153]

I so absolutely agree with your attitude - accept facts and move on with as much positivity as possible. I have been v e r y tempted by quite a few of the supplements on offer ove rthe internet, but I've decided to just live healthily - cut right back on alcohol (which is quite easy) until I get a definite diagnosis, But with two positive antibodies tests, I think have to face the fact that I've most likely lived with Hep C for may years - without any symptoms so far.  As you say - its lucky to find out something's wrong,  before it is too late to prevent further damage.

Thank you for your advice - I am going to be one of the most prepared people for a diagnosis!  And yes, I am gradually getting far better mentally prepared. Especially after being able to discuss it so openly here.  By the way - did your enzyme level go down just by healthy eating and moderate or no alcohol? And how long did that take you? Have a wonderful weekend!         Inge  

[miracle05]

WELCOME TO THIS FORM --I HAVENT POSTED ALOT BUT THE PEOPLE HERE GOT ME THROUGH THE TOUGHEST TIME OF MY LIFE--- THEY ARE UNBELIEVABLE --THEY HELPED ME SO MUCH --IM OFF OF TREATMENT NOW AND HAVE COME BACK HERE TO HELP OTHERS AS THEY HELPED ME --WE ALL CARE !!!

[sunkitty]

Hey girl,

Hope your hanging in there.  First, let me say welcome from across the pond!  I live in Kansas (USA) and want to tell you that my family hails from England. I still have an uncle, aunt, cousins, and nephews who live in London and a great friend who lives in Ashford, Kent England.  I understand your medical coverage over there is different from mine.  I was in England three years ago to bury my mother (who died in Ashford Kent) and the healthcare was not the best.

I also want to tell you something VERY important.  Hopefully this will be one big SCARE for you.  I also tested positive for the Anti-HCV test.  I then went to a gastroenterologist and had the additional testing done as FLguy stated.  I want you to know that after waiting two weeks for the HCV Riba and HCV RNA I tested completely negative for the disease.  I am one of those people that tested a false positive because of my other auto immune diseases.  There is hope, no matter what happens, and you will make it through it.  I wish you were able to get to the doctor earlier because I know how hard it is to NOT know.  I had my mind made up that either way I was going to be ok, but I just needed to know what the results really were.  I understand completely what you are feeling, and so does everyone else here on the board.  

Please hang in there, try to keep your routine as normal as possible, I know with me I lost almost 15 pounds because of the worry and stress to have another auto immune disease.  I also know what it is like to not to be able to talk with your family regarding this issue.  That was one of the hardest things for me to do.  I finally told my family last night after getting the news that I was never positive for the disease and they didn't seem to care one way or another.  This board was the most helpful and supportive that I've ever seen.  

So continue to post!!  We care.

Hugs,

Sunshine (aka Karen)

[nygirl7]

It sounds from reading this thread that you are getting a bit more acclimated to the idea that you might actually have HCV.  That is something we all had to go through but we got there.  Doing what you are doing right now is the exact perfect thing you should be doing while you are forced to wait - learn what you can so that you don't feel powerless against the disease.  I think that is what freaks us all out the most, it's like wow now what do I do to beat this and it seems so daunting!

But, it's really not.  The first step learning all you can makes you powerful again.  Meeting people who have walked in your shoes makes you powerful again.  Then you start to realize - ok a lot of other people have done this and beaten it.  I can too. (If you even have it which is not determined yet).

I tried to realize how lucky I was that I found out I had the disease.  People are not diagnosed until they are completely symptomatic and then it's too late to do anything about it.  If you are dx'd as having the virus there are things you still can do to get rid of it.  There you go...power goes back to you again.

That's a good thing.  Try to be optimistic but realize if you are positive it's not the end of the world and you can beat this just like many of us have.  It's not easy but in the end it's all worth it.

PS Stay away from ALL cures on line.  The ONLY cure is the current combo treatment and nothing else will do anything except take your money.  Believe me, if there was an easy way to get rid of it that didn't include treatment the folks in here and other real medical forums would know it. Heck it'd be on the front page of every newscast and paper in the world!  Continue to live as healthy a liver lifesytle as you can, get copies of ALL of your test results as soon as they come in and put them in a folder so you can learn how to read them yourself.  Power back to you yet again.  It's nice not having to wait for the doctor to transcribe a report or call...you can just look and go yay my enzymes are down to 20 all by yourself!  :)

Best of luck Inge.

[Inge153]

I suppose everybody's first reaction is ''oh my god - how awful" -  but then a gradual awareness and understanding what it means takes over, and life goes on. There is so much to take on board - and as far as I can see, the best self help remedy is to adopt a really healthy style of living!  I've always been interested in alternative remedies and have started taking milk thistle - but other than that nothing.. There's so many remedies and even so-called 'cures' on offer online!  

I had a couple of  routine blood tests which showed slightly elevated enzyme levels. I then  had a liver scan which showed nothing abnormal - but the enzyme level was still too high. The following  two blood tests showed positive for Hep. C antibodies,  and my GP referred me to a specialist who cannot see me until 20th October. All I know about the condition has come from the internet and from this forum. Nothing else at all. I am not keen to go back to my GP - she's all right - but I find it difficult to speak to her. And until I've seen the GI there's nothing much to discuss...    

Anyway - thanks for your response - I hope you're getting on all right!  The time will pass, and I'll keep logging on here - it seems a very friendly  site.

[justjess530]

I have been diagnosed for 6 years, went throught tratement, to no avail.  My boyfriend does not have it after being together for over 8 years, my children do not have it from cross contamination exposure prior to diagnosis.  Is it is terrifying thing to hear that you may or may not be chronically ill with something that you may or may not be able to get rid of  (depending on type'genotype)?    Hell yes, but is it a death sentance, no more than being born is.  If you do have this, it is going to be ok, there are hurdles yes, there are hard times, yes, but it is managable, and you can live a normal life, you just sometimes have to make sacrifices you didnt plan for.  DONT WORRY, STRESS will kill you faster than anything else.  Get all the info you can, ask as many questions as you can think of, accept all the hugs you can get, laugh and smile and know you are not alone.

[Inge153]

Thanks for your encouraging words - I suppose I've just gotta be patient till October when I'll know for certain whats what. I think I'll be OK about dealing with whatever that is. It's the uncertainty that is really unsettling. Meanwhile I'll try to learn as many facts as possible, and this is seems a great forum for suport in many ways...  

[mirceani]

Even if you have the virus, treatment may not be necessary for you
Depending on your age, and assuming your liver biopsy shows minimum or no damage to your liver, you may even forget that you have this and live a normal life.

[Inge153]

You know,  it has already helped tremendously to talk to - and hear from you all. I have not spoken to anybody else about testing positive for antibodies yet. And until I have seen the gastroentoroligist, I suppose I won't know for certain exactly what's going on. And it is such a long wait.20th October's my appointment. But that's England for you!
I am still trying to get familiar with  this site - and indeed getting to know as much as possible about Hepatitis C. Both Bill and FIGuy gave good advice.  How're you getting on yourself?  When will your tests come back?  I hope it's good news when they do.
I think it's the uncertainty that's so difficult to accept - it keeps you on edge.

[sunkitty]

Hi, welcome to the board.  I'm also a new member so I know exactly what you are feeling.  I've been waiting thirteen days for my HCV test to come back.  I tested positive for the antibody test and went and saw the gatroenterologist.  I know your emotional right now, because I am too, but want  you to know that this is a great site.  Bill and FIG guy have been very helpful for me!  Keep talking and discussing because this is a hard subject.  We are all here for you!

[FlGuy]

Not necessarily knowledgeable.  Just 'been there, done that, got the t-shirt'

[Inge153]

Will do - you certainly seem extremely knowledgeable on the subject. Thanks for your advice!

[FlGuy]

My last post comes from:

labtestsonline.org

which is a handy website to save in your favorites.

[Inge153]

Thanks FiGuy, I'll do that - it's reassuring to hear from somebody who is in the know!  And doing something is better than just wait - and wait!

[FlGuy]

Anti-HCV tests detect the presence of antibodies to the virus, indicating exposure to HCV. These tests cannot tell if you still have an active viral infection, only that you were exposed to the virus in the past. Usually, the test is reported as “positive” or “negative.” There is some evidence that, if your test is “weakly positive,” it may not mean that you have been exposed to the HCV virus. The Centers for Disease Control and Prevention (CDC) revised its guidelines in 2003 and suggests that weakly positive tests be confirmed with the next test before being reported.  


HCV RIBA test is an additional test to confirm the presence of antibodies to the virus. In most cases, it can tell if the positive anti-HCV test was due to exposure to HCV (positive RIBA) or represents a false signal (negative RIBA). In a few cases, the results cannot answer this question (indeterminate RIBA). Like the anti-HCV test, the RIBA test cannot tell if you are currently infected, only that you have been exposed to the virus.


HCV-RNA test identifies whether the virus is in your blood, indicating that you have an active infection with HCV. In the past, it was usually performed by a test called a qualitative HCV. Qualitative HCV RNA is reported as a “positive” or “detected” if any HCV viral RNA is found; otherwise, the report will be “negative” or “not detected”. The test may also be used after treatment to see if the virus has been eliminated from the body.  

[FlGuy]

If there were antibody tests they indicate that you were, at least, exposed to HCV at one point.  About 20-25% pf people so exposed fight off the infection by virture of their own immune system.  The GI will prescribe a couple of more tests.  If it was me, I'd call the office in advance of the office visit and the the prescription for the tests now.  That way, you'll have the results back in order to have a more complete conversation with the GI.

[Inge153]

I had two seperate blood tests - both antibody positive. Until I see the specialist next moth I don't know how to get info about genotype and viral load etc. How can I not have Hepatitis C if both blood tests were positive for antibodies? Inge153

[FlGuy]

The positive anitibodies does not necessarily mean you have hepatitis c.  The first on your list of questions should be to learn the testing that is required to make an accurate diagnosis.

[Inge153]

Thanks, I'll bear that in mind. There's so much to take on board still. Inge153

[newleaf09]

If your screening workup indicates that you need to treat the disease, you are already aware that interferon can cause emotional disturbance.  Many patients begin taking an SSRI antidepressant before they begin the drug therapy, just as a preventive measure.  Talk to your doctor about it before you start the treatment.