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    Old 03-29-2002, 12:20 PM   #1
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    Hepatitis C test

    Hello, I just had a question about a test that I had. I posted another question, but I'm not sure I did it right, so I'm doing it again. I recently went to the dr and found out that my liver enzymes were high, so he went on to do a Hepatitis C test, which came back positive. The doctor was very surprised at this, and I was too, becausse I have no risk factors for this. He said that sometimes tests come back "false positive' and that I need to be re-tested, so I am going to a liver specialist. He said he'll take more sophisticated liver tests, etc. Does anyone know anything about "false positives" in Hepatitis C tests? It seems like if it came out positive, then I probably have it. But I can't imagine from where, I have never done needles, have been married for 20 years with 3 kids, and it seems like it's not that easy to get. Anyway, I am hoping it's a false positive, but with my other enzymes elevated, that seems unlikely. Thanks in advance! Val

     
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    Old 03-29-2002, 08:24 PM   #2
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    Re: Hepatitis C test

    Your body can give a false positive ,But it is best to get the proper testing again to be sure. Have you ever had a blood transfusion?Tattoo?You dont even have to be a IV drug user,If you even snorted drugs & shared straws & there was a little blood in the straw from someone elses nose it can get transferred that way also.Manicures,pedicures(dirty&unsanitar y utensils),Etc.This used to be called the druggie disease,But not anymore!There are so many ways to get it now,It is really on the rise.It is so frightning!Get the proper testing ,I hope for you,that you are o.k.!good luck!
    P.s.If you are positive,Just remember it is not a death sentence! Just really do your research before making a decision on what treatment to do!I am going the alternative route,I am getting healthy with no side effects!And I can still live a normal life!

     
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    Old 03-29-2002, 10:43 PM   #3
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    Re: Hepatitis C test

    Hi, thanks for the reply, I am learning more about this all the time. Does it usually take a couple of tests to get the proper diagnosis? I don't know why the doctor kept mentioning false positive, I guess he was very surprised at the test results since my enzymes are not that badly elevated. Thanks for the advice, I didn't know earlier today if I was given a death sentence or not! Some of the sites on here can be kind of scary reading about it, and how the numbers seem very high of those that go on to have a serious problem with their livers. I have never had a tatoo, I had my ears pierced is all, and there really is nothing else. I have been married for 20 years, have 3 kids, I am 42, and the only thing my husband and I could think of is the dental procedures I have had done, but the doctor seemed to think that was very unlikely. He said the false positive thing can be as high as 50%, but I think he was trying to make me feel better. So, if I have already had it for some years, are you saying that I can still live a long time with this? I have an 8 year old daughter, and am of course so worried about leaving her and my other kids. Sorry to sound depressing, and thanks for the advice!! Val

     
    Old 03-30-2002, 09:39 AM   #4
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    Re: Hepatitis C test

    It sounds to me tht your doctor was really on the ball to give you the test. Good for him on that score! And good on him for the referral to the specialist, too!

    There are many people who would test antibody positive (7 million if the numbers are accurate).

    Hepatitis C is NOT a death sentence, it is more of a life sentence. For those who have it but do not know it, it is far more dangerous because they are not doing the necessary things to avoid liver disease (smoking, drinking alcohol, etc)

    Even then, most people will die with the virus than of it and treatment is an option because it has risks attached to it and doesn't work very often.

    Now, the false positive information is vexing. A false positive can mean the lab made a mistake. If your doctor is using a lab with a 50% error rate, he should switch to another one, or take these folks to task! Otherwise, you are probably dealing with his bias about hepatitis C.

    A first antibody test tells you whether you were ever exposed to the virus and mounted an immune defense (antibodies)

    A PCR test will confirm the presence of the virus itself. Beyond that, depending on the result, there may be more testing. But, for now, read through the boards (even the archive pages) Almost every question has come up at one time or another.

    We don't know all the risk factor for hepatitis C. I would bet that if we identified everyone in the country who would test positive for hepatitis C, over half wouldn't know how they got it.

    Other than a traceable blood transfusion or product, no one can really say how they contracted the disease. It is a guess, at best.

    best wishes to you and to your family,

    thanbey

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    Old 03-30-2002, 10:03 AM   #5
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    Re: Hepatitis C test

    Thank you for the uplifting information, so you mean that you can live with this virus for several years? I am still trying to figure out what this all means, can I expect to live for years without any symptoms, or is it like each day waiting for symptoms to appear? Bad news for a hypochondriac like me!! So, there are no good treatments for this right now? I am just trying to eat really good and drink lots of water. Thanks again, Val

     
    Old 03-30-2002, 04:25 PM   #6
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    Re: Hepatitis C test

    Hello Val--

    Yup, that's what she means. You can live with this virus for the rest of your (very long, we hope) life, and maybe never know you had it if it weren't for the blood tests. This requires you to avoid alcohol, smoking, other obvious liver toxins (if you work in a chemical plant, quit!), and try to eat well and take care of yourself. not much else.

    Not all are so lucky, but the statistics seem to clearly show that most hep c'ers (is that a word?) do NOT develop serious liver disease including cirrhosis or even rarer, liver cancer. Most of us will die of heart disease, or a bus hitting us, or who knows what, long before hep c ever becomes an issue.

    the docs are very upset about hep c 'cause, as they will tell you, for those of us who do get sick, it can prove very serious indeed, and nobody should downplay that. BUT, this does not change the fact that any serious consequences seem to come to fewer than 20 or 30 percent of us. really scary stuff, like liver cancer, happens to only a small fraction of that fraction.

    In my case, I seem to have had this for more than 30 years, and never would have known it if I didn't have a great gp who didn't like my liver enzyme tests and had the curiousity to check further. Not much in the way of symptoms, in other words.

    I've now known for two or three years, and have to inventory all my physical and mental functions to come up with what I THINK might be symptoms. don't have time for it, really.

    So, relax unless and until someone gives you reason not to. just having hep c is NOT such a reason.


    [by the way, three births, some dental procedures, pierced ears, are all possible routes of infection--especially in the old days (pre AIDS) when even med. professionals, took fewer precautions. But, as Thanbey said--really, who knows?]

    Stick around. As thanbey says, read a bunch of the old posts here. You'll be glad you did. And we're glad to have you.


    sean

     
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    Old 03-31-2002, 12:26 AM   #7
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    Re: Hepatitis C test

    Sean, thank you so much for the very uplifting letter!! It made me feel so good. I just got home and it's late and I came on here real quick as I do, to see if there is anything to make me feel better, and there was your response! Yea, it can be quite overwhelming right now, cause I have purchased a few books, looked all over the internet, and there is some good news, but there is also some really scary stuff. My doctor seems to think that if I have it, it would be a mild case because of my enzymes not being super high, but then I read in books, that dosen't seem to matter too much, that you can have near to normal enzymes and a diseased liver. I guess each case is different. He was trying to make me feel better, I'm sure. It's just so scary, cause if the next test does come out positive, then I have to think of my three kids, and could they have it. I guess their chances would increase if I acquired it before I got pregnant with them. And, I breast fed all of them. So much to worry about! So, the way I get it so far, is that there is not much treatment for this, but if you take care of yourself, not drink or smoke, etc. you can slow this down hopefully, right? My brother said he talked to a nurse he knows and she said those that go on to have serious problems usually kept harming their liver by these things either because they didn't know they had it or just couldn't kick those habits. Are you on any treatment, do you do any natural medicines? I got on Naomi Judd's website, and she had some info on there about natural meds. Again, thanks for the info! I appreciate the reply, Val

     
    Old 03-31-2002, 08:55 AM   #8
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    Re: Hepatitis C test

    Val,

    Many people with hepatitis C and even with cirrhosis can lead an entirely normal life.

    The trick is to protect your health from the moment you are diagnosed and to maintain your level of functioning. Manage your energy through rest, exercise
    and proper diet. Stressing yourself over being diagnosed is going to drain you.

    The difference between before dioagnoses and after are the choices available to you and the knowledge you now have.

    Believe me when I tell you this: people die of this disease less than 5% of the time. Those most often are people who have abused their livers because they didn't know any better. Women of normal weight do extremely well overall. There is even research suggesting that the rate of disease in normal weight women is quite low.

    While children do get the virus from their mothers, they usually do not carry the virus past the age of 5 years. Those that do have a very good prognosis if you teach them how to take care of themselves.

    Breastfeeding does not pass the virus to children. A high viral load is associated with greater chance of transmission.

    You can opt for alternative treatments, but at this point I would advise you to simply wait and see what you are dealing with in terms of any liver damage.

    This disease moves so slowly that damage usually does not even show up for more than twenty years. Decisions about treatments are not emergent. You can wait and see, discuss and research all of your options, including the various interferon based treatments (Infergen, Roferon, IntronA, etc) Even the treatments vary a little from one another. You do not need to commit to treatment until you have adjusted to your diagnosis and decided that it is right for you. There are a lot of considerations that go into that decision and there are only a few doctors that take the time to go over every consideration with you.

    Try not to stress too much over this. There is a lot of marketing information that has soaked into the hcv community (including some doctors) and has become part of the information you will see.

    There is no reason to avoid any particular foods or to certain way (other than healthy, well balanced foods)Just don't smoke or drink alcohol.

    Breathe deep and enjoy your life, your children and your husband.

    Enjoy your day!

    Teresa Hanbey


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    Old 03-31-2002, 01:29 PM   #9
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    Re: Hepatitis C test

    Hi all and Teresa, thanks for the great, informative letter! I am feeling better about this all the time. It's really scary to go through the books, but you're right, I need time to let this settle in. I hope I can get to the point someday when I don't think about it every minute. So, is it stupid of me to be hoping for a 'false positive'? I don't want to set myself up for a big fall, but the doc who originally took the test, said that now I have about a 50-50 shot of the next one coming out positive, and that since I'm such a low risk, it could be false positive, he said he was shocked when it came back positive since my enzymes were not too high. The test I took says HCV-RNA By PCR, and I am trying to understand this, I think that is the initial screening, but the definite diagnosis comes with the next test, is that right? A book I read said there are some false positives, and that the second test has less than a 10 percent false positive rate. I hate to think about this too much, cause I don't want to mentally count on that so much. It just is so weird, cause I'm so low risk, and feel great. Anyway, I have to keep reminding myself of what you guys are telling me on here, that it is not a death sentence. The thing that is hard is learning to take care of myself, cause with the three kids, I have never taken time for myself, cause I just enjoy taking care of them. The adjustment for me will be to be selfish, so I can be here for them. But, another question is, if I have already had this for 20 years, I am 42, and didn't know it, couldn't that mean that I am further into the disease, and my liver could be alot worse? One thing that made me feel better, is that other things on the blood test were normal, like my Albumin and my Globulin, and my Bilirubin, but I don't know how much those things matter. Thanks again all of you for the great advice, I knew this site would make me feel better! And, it's really life changing! Thanks again!! Val

     
    Old 03-31-2002, 02:10 PM   #10
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    Re: Hepatitis C test

    Val,

    The chances of a PCR being a false positive are almost zero. An antibody test- maybe, but not the PCR.

    The positive PCR and normal enzymes are very common in patients who have HCV. Likewise the other test results. All normal and common.

    Sounds to me as though you have chronic hepatitis C and will require a biopsy of your liver to determine what, if any damage exists.

    Your doctor has biases probably born of misinformation. He needs to do some research. Please direct him to hcop.org for the reference article page. Let's hope the specialist is better informed.

    Take a deep breath and remember that HCV is NOT a death sentence and it is a slow progression, when or if, it ever does. You are likely to live a long and healthy life and enjoy beng a grandma as much as you do being a mom.

    Please enjoy your day.


    thanbey


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    Old 03-31-2002, 07:57 PM   #11
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    Re: Hepatitis C test

    I just thought I would check back for your response & I think you need to not stress so hard until you find out for sure .And if you are positive,You just need to know that you can still lead a normal life.I wasnt sick either ,Mine came up because I was going through infertility .There are so many ways to contract this,It is to hard to figure out how we got it in the first place.I have to beg to differ with thanbey that you just need not to smoke or drink.There are so many things you should cut back on with hep c,Because ther are so many things that ARE VERY TOXIC for a hep C liver.I posted health tips for hep C ,Please take a look at it & in addition to taking all of my herbs& antioxidents every day ,I also take a hot bath with 3 cups of epsom salt once a week for no longer than 8 minutes ,This helps pull toxins out of your body also!It is also very important to excercise & sweat your tushy off for at least one hour a day,This also helps get toxins out of your body.There are people in here that are knowledgable about what we have all learned from our doctors,But they very much lack knowledge on how to heal your self naturally with herbs,What you should & shouldnt eat,drink ,or just stay away from with a hep c liver .There are so many things that make our liver work to hard,Therefor we need to stay away from these things.Also drink lots & lots of water !I mean divide your body weight in half & that is how many ounces you should drink in a day!Please,Please,Please do your research!There is so much information how to get healthy&stay healthy!Please take care of yourself !You will be just fine!

     
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    Old 03-31-2002, 10:47 PM   #12
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    Re: Hepatitis C test

    Hi all, I just want to tell you that I can't thank you enough for all the info, it has helped me to relax a lot. I hope someday I can be of help to others like that, once I learn all about it. A couple of questions, if you don't mind. The doc said that I could have had this for 20 years and not know it, so does that mean, if that were true, that I could be closer to serious liver damage at this point? I hear what all of you are saying about living a long, healthy life, but what if I have already had it for 20 years? In that 20 years, I never smoked, drank very rarely, but I am overweight. So, I guess I didn't damage my liver too much in those years with drinking or smoking, but how long can you go with HepC before it turns into something serious? And, I heard therapy can be terrible, do you just do therapy to slow it down, or do you do it at the point where you are losing options? So many questions I have, you're right, I do need to first find out a definite diagnosis, I haven't even been to my liver specialist yet. I do feel fine, but I hear that's normal also, even if you're liver is bad. So, I guess I could have a really bad liver right now, and not know it, right? Thanks again for all the answers, and tell me, does it get to the point where it dosen't take over you're whole life? I have so many other things to think about with the kids, and their lives, I don't want to think about this all the time. Thanks again!! Val

     
    Old 04-01-2002, 08:40 AM   #13
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    Re: Hepatitis C test

    Hi Val--

    Boy, I wish I had had the good sense to ask so many good questions right at first. I spent months getting the barest info. Too nervous to ask everything at once.

    A couple of things: I apparently had the virus for 30 plus years before diagnosis, smoked most of that time, and drank occassionally (but to excess, I'm sure, too often to brag about), and still only am at stage 1 of fibrosis. Stage one is not as good as zero, but it isn't much, either.
    On the other hand, yes, having it a long time can mean EITHER that it must move very slowly in your case (the great majority of us), OR that you are one of the unlucky ones in whom the liver damage is silent until very serous, and over the years bad things have been progressing inside. ONLY a biopsy will tell you this.
    Assuming you get past the issue of whether your result is false or not, you will simply not know much about your individual case until you have the biopsy. It is not a big deal, although no medical procedure is a treat, and it may--it will probably--give reassuring results.

    As to weight, I am always sorry to report this, cause I know people struggle with weight more than almost anything, but the research does indeed seem to show that being overweight increases the likelihood of liver damage in hep c (or any other liver condition from what I've read), and losing weight can have a direct, healthful effect on the liver's condition even if the person does not treat the underlying virus.
    Further, if you DO have hcv, and DO choose treatment, the reserach also seems consistent that losing weight increases the odds of successful outcome of treatment.

    Fat is stored in the liver, more or less in direct proportion to the amount of fat (especially abdominal fat) in the person's body, and the liver is stressed by, even eventually damaged by this fatty tissue load.

    I have noticed that the steps we take for heart health--slimming down, eating lots of fresh fruits and veggies, exercising, and so on, all also seem linked to liver health as well. Again this is my conclusion from the reading i've done, and this may be incomplete, or i may be over-interpreting. It seems like these steps would surely improve general health for most of us, so it can't hurt to begin with these while learning more about what does or doesn't hurt your liver.

    I don't mean to ignore Shyan's suggestions--I follow a few alternative thingies myself--but I believe in studying things VERY carefully before diving in, and would start with steps we are pretty darn sure cannot hurt us any. The overall fitness recomendations fit that description, and the weight piece especially seems to have a lot of research backing up its importance for hep c and other liver conditions.

    The HCOP site has a good intro to nutritional issues and hep c. After that, things get pretty technical, but I am confident what I've said here is safe and correct.

    Hope this helps.

    sean

     
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    Old 04-01-2002, 10:54 AM   #14
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    Re: Hepatitis C test

    Thanks Sean, yea it did help, I know, though, maybe I am getting ahead of myself a little bit here, cause it's all so overwhelming. Sometimes when I go on different informational sites on the internet, those are really scary, and before I log off, I come on here and read all of your letters again. The diagnosis seems much worse on those other sites. You guys say that most people live normal, long lives with this, but then on those different sites it says that its fatal, and no cure, and it just generally says nothing good. So, to get by each day, I am still reading the letters here. I have my appointment tomorrow with the specialist, and I am just anxious to find out what's going on, so I can deal with it. I am so nervous that the kids could have it. I told a close friend of mine, and she said that her husband was not even allowed to give blood for a year because his son's tutor had HepC, and they consider that to be exposure. That's really scary I think, that you could get it with such casual contact, if any contact at all. My eight year old daughter and I have shared drinks, kissed all the time, etc. Well, thanks again!! Val

     
    Old 04-01-2002, 12:03 PM   #15
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    Re: Hepatitis C test

    Rest assured of this: you cannot contract hepatitis C from hugging, kissing or any household contact. A sexual transmission from a woman to a man has never been documented, either. More on this in past posts.

    Do not share manicure tools, toothbrushes,razors etc just to be on the very safe side.

    This disease CAN be fatal and it is for a very few. But that is the exception and not the rule. Please believe me on this one.

    As for your children, it is unlikely that they have it, but you might want to test them for your own peace of mind.

    I'm am glad this has been a haven of sanity for you. Makes my day!

    thanbey

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