Hepatitis C test is Reactive... and I am scared!

[Alady1620]

Hey.  Try not to panic.  Even if he does have hep c, it is NOT the end of the world.  He will have to quit drinking and eat healthy.  He may or may not decide to treat.  You can read this forum to find out more about those things.

Everything will be ok.  

Here's my story... My fiance and I were cutting wood and he got cut and at the hospital they sewed him up and the nurse got a blood splash in her eye. They gave my fiance a blood test and a few days later the hospital called and told him something like, "Your test came back reactive to hepatitis C, but don't worry because we get a lot of false positives." How are we not supposed to worry about it when they tell us that? He was in pain and the doctor wouldn't give him any medicine until he had a liver function blood test. So he got the test and they told him everything is ok with his liver. They told him they don't think it is active because of that but they took some more blood and sent it to the lab to run a different test to confirm that it is not active. Well I am scared to death we are going to find out he has it. It's all I think about. I asked him if he knows any way he could have gotten it. He has a tattoo that he got in the 1970's and he snorted cocaine probably 10 years ago and shared the straw but he never shared needles. I asked him if he ever had sex where he was bleeding and he said no. I hope to God he doesn't have it. I don't want to live without him. If he had it, does that mean an automatic death sentence?  He doesn't show any symptoms of the disease, but I know that a lot of people don't. I have read that the test can be a false positive due to medications and he is on 5 medications right now. (Klonopin, Wellbutrin, Gabapentin, Seroquel and Lithium) That is what I am hoping it is. But I can't just not worry about it. I don't understand how they can tell you not to worry about it. How many people have a false positive result? They say they get a lot, well how much is "a lot?" He is 49 years old. Will his life be shortened if he started having symptoms now? Is our future ruined?

[Tombstoner]

If he has it, how can he decide not to treat it if he wants to live?

[Bill1954]

Hi there,

Based on your story in the post above, your BF has received a positive result to the antibody test. About 15 to 20% of people that have been exposed to this virus and test positive for antibodies go on to clear the virus via their own immune system. The other test they took to confirm “active” virus is generically known as a “PCR” test, which is quite conclusive for active infection.

To answer your question “If he has it, how can he decide not to treat it if he wants to live?” Believe it or not, sometimes opting to take a “watch and wait” position is the most responsible position to take. Many people that are HCV positive don’t have progressive liver disease, and will go on to live a long life; most of us will eventually die of something unrelated to Hep C.

The medicines currently used to treat HCV are, well… a little medieval. The treatment involves 6 to 12 months (or more) of weekly injections of Interferon, and daily doses of an antiviral Ribavirin. There are significant side effects associated with these meds, and can take a lot out of a person. The concept of co-existing with this virus sounds strange, but might be realistic.

In the meantime, have him stay away from *any* alcohol, discuss any meds he takes (even over-the-counter) with his doctor, and avoid any exposure to his blood. This will include sharing toothbrushes, floss, nail clippers, etc. By the way, HCV is *rarely* sexually transmitted- the Center for Disease Control does not recommend for or against the use of barrier contraceptives, nor does it consider HCV a sexually transmitted disease.

Try to relax until you guys get the results from the PCR test- this stuff is NOT usually a death sentence. I’ve probably had it for over thirty years, and don’t have any plans to check out in the near future.

Relax, and take good care,

Bill

[Alady1620]

Tombstoner,

It is not a death sentence.  Hep C is a very slow moving illness especially if a person takes care of themself.  The meds are heavy duty and treatment is often difficult.  You need to read the archives in this forum and do more research.  It's going to be ok.

Take care.

[meki]

" (Klonopin, Wellbutrin, Gabapentin, Seroquel and Lithium)"


HOLY TOLEDO!

Wowser - you're talking some serious issues there girl - I do not know if he, having the disabilities that he has may be capable of taking the Interferon treatment, with those medicines.

A lot of people choose to monitor and wait. It is not a death sentence.

It is not a cakewalk - either way --- but he's been alive all of this time -  and obviously has not much damage.

But your future is not ruined... LOL! -- In fact, I'd say it was just begining.

Chill - HCV is a very slow acting disease in most people --- some have more damage quicker... depending on health, age, etc. But generally - most people are asymptomatic until everything starts to break down.

It took them 1 full year of looking for something wrong with me before they came across the HCV diagnosis.

My suggestion to you, is to read through this forum... Read all the way back --- find out what you can... And be supportive.

Also - just on a whim - go get yourself tested.

Good luck - and welcome to the forum.

Meki

[Tombstoner]

Thanks for your replies. They make me feel a little better, but still the idea of dying a slow death (if it turns out to be he is progressing, if he has it) scares me. I always imagined him growing old with me. Well, he is 21 years older than me so I always figured I would outlive him but I don't want him to die any sooner than he has to.

In my mind, it's like if you just monitor the disease, it's like allowing it to multiply and make you sick faster.

You're right, he's been alive all this time, so he must not have much damage (if he has it). Since it is a slow moving disease, if he has it, will he be in his 70's or 80's before it would kill him, if it would?

Considering he takes all that medication listed above, could that have given him a false positive? I saw on a post on Yahoo Answers that somebody wrote that medications are usually the culprit in causing false positives. I hope that is the case. He got his blood drawn for the second test last Friday morning. How long does it take to get the results back?

Can he and I still have a baby together? I will go get tested if it comes back that he really has it.

If he has it, I will take care of him as best as I can.

[Alady1620]

"In my mind, it's like if you just monitor the disease, it's like allowing it to multiply and make you sick faster. "

I felt the same way and that is one of the many reasons I decided to treat.  Studies show that treatment is more successful the younger people are when they undergo it.  That was a major factor for me.

Most likely, he will die of something else before he dies of hep c unless he doesn't take care of himself.  The medicines he is on are a concern because many medicines are VERY hard on the liver.  Some more than others.  IF his tests come back positive, you guys need to do some research on how the meds he is taking could effect his liver.  

That is what hepatitis is, ya know?  It is LIVER DISEASE.

The other concern with his meds is that, if he should decide to treat, how would that effect his other afflictions?  Standard treatment is equated to low dose chemotherapy for 24, 48 or more weeks.  My guess is that he is on Lithium for some type of mental disorder.  The treatment drugs can cause serious issues on top of the problems he already has so treatment is something you guys are going to have to look at very closely and determine if it's even worth it for him.  

As to having kids, I had twins while I had hep c, both of which were not infected.  Do NOT even consider getting pregnant when he is on treatment because of the birth defect risks but, there is no reason why you can't have children as long as you are aware of the 5 percent chance that your children may be infected.  Heck, if YOU are not infected, I am sure the risk is even less.  

You should hear back about the tests next week.  I hope that your husband had a false positive but you should prepare yourself for the worst just in case.  You need to support him right now.  As bad as you feel, I guarantee that he feels worse whether he shows it or not.  

[Tombstoner]

Thanks for posting. I remember the doctor asking us if his liver was all right, when she prescribed one of those medications. He takes Lithium because he is bi-polar and he is hard to live with if he doesn't take it.

I try not to think about all this but I feel guilty if I don't think about it. I don't want to convince myself he doesn't have it because then if they say he has it, it's going to be even worse of a shock.

I didn't know that if he is on treatment for it, that there could be birth defects for a baby. What about after a treatment? Would there still be a risk of birth defects after you take it and aren't taking it anymore?

He says he isn't worried, but how could he not be? I am more worried about him than myself. I just wish I knew the answer I didn't have to wait around worrying about it.

The hospital makes it sound like the test he took is just unreliable. Why else would they say not to worry about it? They make it sound like they use that test to basically verify that somebody doesn't have it, rather than verify that they do. Then at the doctor's office the nurse told him she doesn't think it's active because of his liver-fuction blood test but they are going to send the blood away to get it tested just to confirm it. I hope they know what they are talking about. I read on the Internet that 40% of the people who have the disease don't have anything wrong with their liver function. So why would the nurse tell him that? I sure hope she's right.

[Kalio1]

The first test is an antibody test and not as in depth as the second test.If you come up pos. on that test, then they do a more elaborate ( and expensive) test  called a PCR DNA, he needs one done, that will determine for sure if he has it, what his GENOTYPE of HCV is and what the VIRAL LOAD is if he does have it. First find that out then go from there.

If he takes lithium, he has regular checks of his liver doesn't he? I have had friends on it and they were required to check the serum lithium levels and have hepatic panels done regularly while on the drug. I don't know about the others he is on, but if it turns out he has it, his drugs will have to be carefully considered (or reconsidered) because HCV will put him in the "liver problem" category and careful attention needs to be paid to any regular medications he takes.
Medications and alcohol both can promote progression of HCV so he will want to take "liver friendly" medications as much as possible..

If he has it, it's a good idea to see a liver specialist who has a lot of experience working with HCV and is up on all the latest developments. It's a slow moving disease, so there is no rush. You can take all the time you need to learn all about it and about his condition before he has to decide what he will do.

As to the false positive, Im sure they happen but I don't find it credible that it happens "a lot" he needs a PCR DNA to know for sure.

As to birth defects, after the treatment, after a period of time has passed, the risk period is over and you can have a baby just like any other couple.

I sure hope she's right about the false positive too but if not, start right at the beginning and get copies of ALL his test results. As you amd he learn about the disease and he learns to manage it, through treatment or "watching and waiting" you will have the information you need to monitor his situation and make decisions. You will learn to ook at the numbers yourself and as you go along you will learn what all of them mean.
He is lucky to have your caring and concern!

[Tombstoner]

Well he goes to get blood tests every 6 months to check his Lithium levels. I don't know what all they test when they do that. He just had one of those tests done about a month or so ago in fact. Do you think they would have noticed he had Hepatitis C from all those blood tests he gets there? I know he even got tested for cholesterol when he got a test about a year ago, during the same test for the Lithium level.

[applez]

"Do you think they would have noticed he had Hepatitis C from all those blood tests he gets there?"


The short answer is no they wouldn't have noticed. The only sure way of knowing if you have Hep C is to have a PCR DNA test. As others have said here this is NOT a death sentence and you should try not to obsess over the chance he has it. Even if he does have Hep C it doesn't mean he is going anywhere soon.  I have had Hep C for over 30 years (SINCE 1976) and I am OK. As far as the Interferon being hard to take, well, everyone is different. I had virtually no side effects other than being tired and being depressed. Being tired went away for the most part and the depression was successfully treated in my case with Celexa. Unfortunately treatment didn't work for me but I know of 3 others it worked for (my pharmacist and I discussed how others had been successful and I wasn't) Others I know say they had a pretty bad time on treatment but here's the thing to keep in mind: many side effects seem to get better as you progress in treatment and everyone's reaction to side effects are different too.
Yes, I would not plan on kids right away if he decides on treatment. I think you have to wait 6 months after treatment ends before you can have unprotected sex just in case you get pregnant.

I hope this helps you and ask away about any other concerns you have. This forum is a great resource and you will get straight talk here. LOL Also, if you want very technical talk on this subject that too can be found here. Just point out what you think you prefer. I guess what I am saying is: this forum has been a Godsend for me. When I was at my low point (the depression) I came here and this place helped me to get through the time I needed until the Celexa worked.

Good luck !

[jmjm530]

I think you are worrying needlessly, and your mind is racing (in a bad way) much too far ahead of the facts.

Many people test positive on the Hepatitis C antibody test but they do not have Hepatitis C. That sounds like what is happening with your husband.

Why don't you just wait until the final blood test results come in. In all probability they will be negative, meaning he does not have Hepatitis C. If for some reason you don't have confidence in his medical team, go see another doctor and ask them to run a Hepatitis C PCR (viral load) test. If it's negative, your husband does not have Hepatitis C, regardless of what his antibody test says.

-- Jim

[jmjm530]

I guess I didn't read your question very well -- early morning excuse :) -- sorry.

If he tested positive on the antibody test, then yes, he does have a chance of having hepatitis C, but like the doctors said, he might not have it.  Given the possiblity, it's normal for you to be worried, but I'd still try not to think too far ahead until the viral load test results come in.

If the viral load test results are negative, then he doesn't have Hepatitis C and all you've had is a big scare. If the tests show he does have Hepatitis C, there are drugs now available that can cure it and drugs now in trial that may cure it even faster. It's also possible that he may not even need to treat right away, depending on the amount of liver damage.

All the best,

-- Jim

[Tombstoner]

Applez, when you say it worked for the other people, do you mean they got cured of the disease? What are you going to do since it did not work for you? You are one of the people who have to live with it the rest of your life? What about medicine that reduces the amount of the virus in your blood? Is that a different medicine or is that the one that didn't help you?

jmjm530, in your first post, you said that many people test positive on the hepatitis C test that don't have it. How many is "many?" How unreliable is that antibody test? You said in all probability the results will be negative. Why is that? Waiting for the test results to come back seems like it is taking forever and it is very stressful. He called the doctor's office today and they said the test results aren't back yet and hopefully they will be in tomorrow because he has a doctor's appointment tomorrow anyway, and we can talk to the doctor about it. They said it usually takes about 5 days. I don't know if that is counting weekends or not.

You know something weird, at first when we went to the doctor's for a follow-up on his injury, they told us all his bloodwork that he had done at the hospital turned out to be ok, then then we get the call from the hospital saying he is reactive to Hepatitis C. So why would the doctor say they came back ok? I don't understand that. Also, the test says "Reactive H." Does anybody know what the H means?

He told me yesterday that if he has this disease and there's ANY chance he could give it to a baby, that he won't have a baby at all.

[jmjm530]

Please read both of my posts, as the second post corrected some comments I made in the first. In answer to your question, "many" probably means from 15-40% depending on what stats/studies you read. That would be the percent of people who test positive on the antibody test but negative on the viral load test. This population does not have hepatitis c, just the antibodies. I'm still a little confused on how many tests he has been given and why your doctor said "they came back ok". What tests came back "ok"? Always a good idea to get your own hard copies of every test you are given.

-- Jim

-- Jim

[Tombstoner]

Well apparently the hospital sent the doctor the results and then the doctor told him the blood tests came back OK. No HIV or any form of Hepatitis. Then the hospital called and told us it was reactive to Hep. C. So they sent us the report. Why would the doctor say that if the tests didn't come back OK? The doctor then gave him a liver function test which did turn out ok. As of right now, his blood is in the lab for that confirmation test. So he is Reactive on the EIA but liver tests are ok. I pray to God that he is negative on the PCR DNA test.

If it is really 15-40% false negative on that test, then that's a pretty lousy test.

[Tombstoner]

I meant to say "If it is really 15-40% false positive on that test, then that's a pretty lousy test." (not false-negative)

[Kalio1]

I have read it is 15 to 20% have what is known as "spontaneous clearing" of this virus. I've never seen the 40% figure before.


I agree with you, if their tests are wrong that often, time to find a new testing facility!
Try not to worry too much, even if he IS positive. If his liver enzyme tests ( ALT/ AST readings) are within normal range, that's a good thing. Another good thing is that he DOES do his lithium level tests. Good for him, I had a friend that didn't do it as he was instructed and ended up with more health issues simply because he failed to do his tests regularly!
The DNA test will tell the tale. They take longer to process than the antibody test so try not to let that stress you out too much. I know how all the waiting and wondering can drive you bonkers.
You seem like an avid learner, you will gather the knowledge you need should it turn out he has it, I can tell you are going to be very pro active and that is great.
Liver enzymes only tell part of the story of the condition of our liver, it is good that his enzymes are OK, do you happen to know what the numbers are? They also checked my platelet count and a number of other things that help to get a clearer picture but a biopsy is the true measure of liver status, usually doctors recommend them for HCV patients, but not always.

Let us know what you find out and try not to worry too much! It's scary I know, but you are strong and you will get through this either way. Keep positive, like my Grandma used to say "worry is worthless!"

[jmjm530]

"... However, more than a third of the cohort were HCV RNA negative at seroconversion, and estimates of clearance were higher (~40%) where both HCV RNA-positive and -negative cases at seroconversion were included..."

http://www.medscape.com/viewarticle/521187_4

----------------------------------------------------------------------

[jmjm530]

The test is not "lousy", it's just that the purpose of the test is not to determine if someone has hepatitis C, but to determine if someone has the antibodies for hepatitis c. Those can be two different things. So the 15-40% figure I gave you are not false positives for the test but the per cent of people who are antibody positive but viral load negative. Two different things. Let's just hope that your husband isn't viral load positive, which the PCR test should determine.

-- Jim

[Tombstoner]

I have heard that 20% of the people who are exposed to it get rid of it on their own. I have heard that 50% can get rid of Genotype 1 and 80% can get rid of Genotypes 2 & 3 but Genotype 1 is the most common in the US.

I kind of "watch over" my fiance, to make sure he does what the doctor tells him to do, as far as his pills and other things. I try to keep him on the straight and narrow. Before he met me, he had a ***** of a girlfriend. He is worried that he might have caught something off of her.

I don't know the numbers from the liver function test.

You know, I read a thing on the Internet where they were talking about how the first generation of EIA tests were bad because they had a lot of false positives. The hospital had to pay for his test because he was not responsible for the nurse getting blood in her eye. Maybe they gave him one of these (unreliable) tests since they had to pay for it. I mean, it's inexpensive and you never know when you get a reactive result whether it is really positive or a false-positive. If get a positive result then YOU have to go get tested and pay for it out of YOUR pocket. Why doesn't the hospital just give everybody a PCR test rather than scaring everybody to death? They shouldn't even bother with finding out if they have the antibodies, but just get down to whether they are viral load positive or not. I mean, if you are antibody positive and viral load negative, what does it matter?

I can't get in the medscape site as it wants a password.

[Alady1620]

The chances are that your husband did NOT get hep c from his former girlfriend unless they were shooting up with the same needles.  It is possible but not very likely.  And that's presuming he even has hep c.  The easiest way to find out is to tell her when your husband has conclusive tests back and have her get tested.  Does it really matter where or how he got it IF he even has it?

[Tombstoner]

No, they did not use needles together. He told me he never shared needles with anyone. It doesn't matter where he got it if he has it, we were just trying to understand where he could have gotten it, to decide if it is possible or not that he has it. We don't talk to that woman. She hates us both.

Here's a question for everyone... does everyone at this board who has Hep. C know where they got it, or have a good idea as to where they got it?

My fiance said he shared rolled bills to snort cocaine in the past. He said the last time was probably 10 years ago. He has good liver function. If he got infected then, I wonder if he would have had a bad liver function test by now? He told me that he did not get a bloody nose when snorting and nobody else had a bloody nose. What are the chances of blood being on the bill and getting infected that way? Wouldn't both people have to have a bloody nose?

[bobbyullc]

sorry for your fear, but, even if he does have hepc he would probably have many years before he need to make a decision. in a year or two the drugs to knock this on it's a++ will be approved and it will be a thing of the past like polio.

one of every 50 people in the usa have it now and live normal lives many not even knowing it. the new drugs get better every year. do not let it ruin your life worrying about something that most likely will never happen.

i had it 37 years and did not even know.
bobby

[bobbyullc]

i would like to add one more thought i have on odds of svr.

i keep hearing the odds are better if you tx while "younger". it has been shown  the odds do go up several percent if you tx "younger".

BUT i believe that younger means 40 y/o as opposed to  60 y/o and not 40 y/o to 42 y/o. 1 or 2 years will not make a bit of difference in odds.

i feel this also means IF you tx with the same drugs, peg/riba, at these ages.

BUT, if in 2 years the new drugs ares on line and prove to be 100% more effective one has 100% more chance of reaching svr even if 2 years older.

in the 9 years i waited the svr rate went from 9% to 50%. i believe in the next few years that rate wil skyrocket even higher.  

therefore one is not comparing apples to apples.

i do not mean to argue,just express my feelings.

[Tombstoner]

We haven't heard anything yet but we are going to the doctor this afternoon. We called his mental health facility and asked them if it was possible he got tested for HCV. They said no, but they said everything else he was tested for is good. They said they thought that if he had HCV that his white blood cell levels would be up, but they are not. They don't even know that he did a liver function test and it came back ok.

[Tombstoner]

We went to the doctor today and the results weren't in yet. I told him that we are both worried about Hep. C and he told us we might as well not worry because there's no treatment for it anyway!!!!!! Why would he say that? Then he said that most people who have chronic hep. c. have elevated liver enzyme levels. He said to him, "You must have been exposed to it before but you don't have it now." I said, "Are you sure?" Then he said, "Well we won't be SURE until the tests come back."

[Tombstoner]

Got the results back. He's positive, and it's active.

[meki]

Oh babe --- OK - hang in there.

Get educated - check out all the posts... Start asking questions that you can't find the answers to here and and Janis - We'll do the best that we can with you!

Hugs,

Meki

[Alady1620]

It will be ok.  I suggest you get another doctor ASAP bc there IS treatment for it.

[Tombstoner]

Thanks for your support. We have been talking with another doctor and he told us that there is treatment. I don't know why that other doctor told us that.

[molls]

Alady,

I read your answer to my post, and mean to ask you then- did you get the twins vaccinated for hep within the first 12hrs of life? Was it done as standard and did you know you had hep when you were pregnant?

As you know im from the UK where they do nothing for you, or youre newborn really and no hep vaccine is given routinely from birth.. I get my hep A,B,C results tomorrow..My ALT, AST has came back down, is that a good sign?

Daughters still high(er) ALT 59. They say they arent doing more blood tests on her, does anyone think i should push for more . She is 8 weeks old tommorrow


JJ

[surgerystudent]

I was recently splashed in the eye with a small amount of blood that was dilluted with saline irrigation. The source patient is HCV Positive. What are the chances that I will seroconvert?
I scrubed out of the surgery immediately and washed my eye out (though I am sure I did not wash it out as much as I should have...)
I am very concerned because I don't want my wife to get HCV if I get it. I was trying to find info on the % of people that convert with a single splash in the eye but everything has a different figure.
Can you please help me!?!? Thanks!!!

[Jakied]

I have a feeling your risk level is for this is low.  Go on 'the body- complete hiv/aidsresource' and send an email to Dr Barb McGovern, on the co-infection with Hcv/Hiv forum.  She is really great.

[Alady1620]

Moll - Yes,  my twins were vaccinated for hep b immediately and then they had follow up booster shots with their other vaccinations.  I found out I had hep c when I was preggers and my babies do not have it.  Transmission of hep b is different tho and I'm not sure what the odds are on that.  My twins were not tested for hep c until they were 6 months old bc that test is not reliable until children reach that age.  I was so relieved when I got their results and I pray that you will be as fortunate.

I am sorry your daughters ALT is still high.  I really  hope they find out what the problem is soon and the doctors can treat whatever it is.  Did your daughters hep tests come back yet?  I know you must be worried sick.  Hang in there.

surgerystudent- I don't know what the percentage is but you should definitely get tested.  Even if you did contract Hcv, the chances that your wife will catch it from you are very low.  Hope this helps.

[molls]

Hi

the doc never tested her for hep they said it was too early and they would just keep doing LFT's and monitoring her health. I got mines back and were all neg but it may be a false neg as it was only done 6 wks afer possible exposure and it could be not detectable yet?

Although my ALT was 1078 last time, surley if it that high there woulbe detectable antibodies by the 6wk mark?I could have been exposed before 6 weeks, its hard to say..

Had fluish symptoms, liver pain , dark urine but very dark stools. Daughter was jaundiced first day of life and carried on til 6 wks after but its gone now and her bili levels are norm.

Doc says her ALT is norm for a newborn, says they can fluctuate like that..

god knows

J

[pauljorofino]

How did you determine that you had the virus for 37 years before you knew that you had it?  I was just told that my viral load tested positive and am scheduled to see a liver specialist next week.  I am trying to figure out when I might have gotten the virus.  Is there any way of knowing how long a person has had the virus?  Thanks.

[hrsepwrguy]

Go to the top of the page and use the orange post a question button it will start a new thread and you will get many more responses to your question. Most don't know exactly when they got it the important thing is to follow up with the specialist and determine how much if any damage has been done to your liver and to determine your genotype, from there you can discuss treatment options