Recently diagnosed with Hep C

[chonji1226]

Hi all,

My wife and I were recently diagnosed with hep C. The doctor says it's definitive and we are just waiting for a liver specialist to contact us; I was initially confused and shocked and as I came to learn more about hep C, my confusion and frustration grew exponentially!

Hep C is associated with drugs, sex and blood transfusion and we have never done any of those things! We are each other's only sex partners..ever.

People might say it does not matter how and where we got hep C but I think this applies to people who were engaged in some "risky" behaviors but we were never involved in any of them. We go through yearly blood exam and hep C never appeared on the results. My wife found out only because she had to go through some tests due to her pregnancy.

Do you have any crazy speculation how we could have gotten hep C?

I'm already 30 yrs. old...I could only think I could have gotten it from my mother and I must have had it long before in which case my liver would be in a pretty bad shape now??

I hope the liver specialist will call me soon.

[gnatcatcher]

Hi, chonji --

There are some people on these forums who got hep C from mass immunizations where the same "gun" was used without being sterilized between people. This was true in the military, and I think someone here had that experience in a public school.

Very rarely there's been news of a dentist who didn't sterilize properly.

You don't say whether you and/or your wife have any tattoos or received acupuncture where the same needles were reused from person to person, but those have been other routes of transmission.

I finally got treated and cured after I'd had hep C for 44 years, so by then my liver either had or was close to having cirrhosis, but it has already improved noticeably. Because HCV takes quite a long time to damage most livers, even if you've had it for 30 years, your liver could be in fairly good shape still. The specialist will assess the fibrosis level via a FibroScan (a special ultrasound) or a blood test (FibroSure is a common one) or a liver biopsy. What blood tests has your regular doctor already done?

Anyway, nowadays the treatments are easy, and nearly everyone gets cured during their first course of treatment.

If the specialist doesn't contact you, you may have to contact his/her office to book an appointment -- there may be a backlog, in which case you can ask to be put on a list to be called if there are any cancellations, so they can see you sooner. Mentioning that your wife is pregnant may increase the chances that they'll make a special effort to fit the two of you in sooner.

Best wishes to both of you and your future child.

Gnatty

[chonji1226]

Thank you for your reply, no we never had any tattoos.

Now, I'm actually more resigned to let it go and simply accept the fact the we have hepatitis C and move forward....but there's also the other side of me that wants to get a second opinion. I'm thinking that clinic might have tested us wrong. we both tested on the same clinic so I'm thinking what if there's something wrong with their testing??

Mostly, I still think there's no way the 2 of us could have gotten hep C but maybe it is just as you said that some dentist did not sterilize his equipment...

One more question...would you know if they will let my wife go through the treatment, she is 2 months pregnant or will they wait for her to deliver the baby so that there's no risk?

[gnatcatcher]

. . . Now, I'm actually more resigned to let it go and simply accept the fact the we have hepatitis C and move forward....but there's also the other side of me that wants to get a second opinion. I'm thinking that clinic might have tested us wrong. we both tested on the same clinic so I'm thinking what if there's something wrong with their testing? . . .

One more question...would you know if they will let my wife go through the treatment, she is 2 months pregnant or will they wait for her to deliver the baby so that there's no risk?

First, it would help to know what tests have already been done. The very first test is usually the one that determines whether you have antibodies to HCV. If that test is positive, it means you were exposed at some point, but quite a few people get rid of HCV (via their immune systems) without needing treatment. They will still always test positive for the HCV antibodies, but they no longer have HCV.

If you also had the HCV RNA by PCR test, and the result is "detected" (or more likely an actual amount, which is also given in its logarithmic form), then you have HCV unless, as you say, there was a lab error, which does occasionally happen. So, yes, given your background, getting a second opinion can be worth the time and expense. The specialist can offer that second opinion and do whatever tests are needed including any retests that seem appropriate. I trust you will tell the specialist what you have told us and will ask all of the questions you asked us.

As for your question about whether your wife would be treated now or after delivery, I just looked at the prescribing information for one common current treatment, Harvoni, and see that it wasn't tested on pregnant women but only on pregnant lab animals (whose fetuses were fine). My guess is that the same thing is probably true of the other new HCV treatments, so I would guess that a liver specialist would counsel waiting. But I and other people on these forums aren't doctors -- we're just people who have or had HCV, so you'll need to ask your treating doctor that question.

For your peace of mind, many women on this forum didn't know they had HCV at the time they gave birth, and in most cases their children didn't have HCV.

Hope this helps.

Gnatty

[andrew j]

Gee - That does sound like a mixup at the lab, doesn't it?

[Mugwump]

  I'm thinking that clinic might have tested us wrong. we both tested on the same clinic so I'm thinking what if there's something wrong with their testing??

Most importantly if you are infected become proactive about all the crucial details!

Ask for copies of the test results. If the confirmation was done with testing for the presence of the virus then there will be a viral load count. The next step is to ascertain precisely which strain of HCV you have acquired. This is crucial information. If the viral strain is the same strain in both of you then most likely you were co-infected somehow. However in the highly unlikely event that you have different strains of the disease then you could not have been infected from the same source.

I am beginning to become disheartened by the numbers who post here and their doctors have just left them out in the cold telling them they have HCV and not explaining at all what the next step is. IF YOUR DOCTOR JUST based a diagnosis of HCV on a one time positive antibody test for both of you then FIRE THEM! He or she has no business being in the medical profession IMO.

If this is the case then insist upon an antibody retest for both of you.

ONE STEP AT A TIME the diagnosis of HCV is not something which occurs from a one time antibody test and if your physician did not inform you of this fact then and scared the crap out of both of you then shame on them.

Any physician that knows anything about the treatment process for HCV would have taken the time to tell you about your viral load after a confirmation of the presence of an active infection. Along with this at least set up a simple ultrasound, cbc tests and especially liver enzyme tests with copies to go to a specialist. Anything less is just plain sloppy doctoring and deserves scorn! The first important information is the state of the liver and these are the first tests that should be done to determine the levels of damage being done if any. It is as important to rule out early infection liver damage as it is to discover it!

Here is hoping that all is well for you and if you are infected you obtain treatment in a timely and less stressful way than in the past.

Many here have painfully learned that being proactive with all the details of HCV right from the first antibody test is the best and sometimes only way to effectively deal with the disease and some medical systems which seem to have a less than smooth profile when it comes to dealing with HCV.

All the best to you and your wife.
Eric

[Lynn K]

I agree with gnatty and Eric

Were you tested for only antibodies to hep c or did you have the HCV RNA by PCR test?

The RNA test looks for the presence of the hep c virus in your blood. It would be a second test draw.

Hep c is not usually tested for unless requested or the patient has unexplained elevated liver enzyme test results. Also it has been recommended all "baby boomers" be tested for hep c as there is a higher incidence of hep c in that group.

Hep c is not generally considered to be an STD and the CDC does not recommend that long term monogamous couples use barrier protection. However, for those who have multiple sex partners, engage in rough sex practices or in the presence of coinfection with HIV there is an increased risk of sexual transmission.

Also there are a number of people who do not know how they got hep c so if you do have hep c unfortunate you will probably never know how if you don't know now.

Best to you both

[chonji1226]

Just called by the clinic this morning, they said they made an error and they want us to take the RNA test and Hep C genotyping test. This clinic is killing us! Literally with the frustration and anxiety, they are crushing us!

They would not say what kind of error they just asked me and my wife to take it again but on a different clinic.

But they did not ask us to do the antibodies test again so I guess this means we are still positive. Thank you for all your replies, I don't know anything about Hep C and have no idea what to ask. When I go back I will ask all these questions.

The doctor was like you have hep C period!

[andrew j]

It doesn't necessarily mean you're positive, by the sound of it.

Whatever the case , the whole thing is sounding better ... More 'real' ... More like it should.

'They made an error'.
Really?!!

Hey - Best of luck with the tests, and

Best wishes,
A.

[Lynn K]

If you had a positive antibody test the next step is always to have the HCV RNA by PCR test to confirm if you are currently infected. The antibody test only shows if you MAY have been exposed in the past.

Even if you had hep c previously about 25% of people beat hep c on their own. At this point we don't know if you have or had hep c ever. The HCV RNA test will answer that question.

Good luck

[chonji1226]

So the results came back and we're both NEGATIVE for the viral load. Doctor says that means we don't have the virus. I'm really happy but still puzzled how we have contracted the virus in the first place.

I'm still worried because I read somewhere that it's possible that the viral load testing caught the virus on a downswing so it not detected it but it's still there....but my doctor did not recommend further testing, he said he has had these cases before of "false postives"

[Mugwump]

HAPPY NEW YEAR!!!!
I suspect that at least one of you had a false positive antibody test. All the very best to both of you!
Eric

[Lynn K]

From what you wrote before I was thinking you only had the antibody test and you were waiting on the HCV RNA test results.

The antibody test only indicates a possible exposure while the HCV RNA test will let you know if you are currently truly infected. Basically the antibody test is as screening test for possible infection.

But anyway you are both free of hep c congrats!

So go out and enjoy a happy healthy new year!

[Mugwump]

A simple ELISA retest should the next step if there is a one time positive antibody test. It seems that in the USA there is a penchant for dipping into the wallet of the patient more quickly. I see that by 2005 the American cost of HCV RNA testing was finally down to a point where it is done more routinely BUT it still costs over ten times the cost of ELISA.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3571002/

Personally if I had to pay for testing I would have asked for a double or triple antibody confirmation retest first and paid the 300 to 400 hundred bucks instead of two to three thousand to find out that there is no viral load.

I guess here in Canada back in the early days PCR RNA was really expensive, my doctor told me it was about 15,000 per test! So here in Canada the standard is retesting for antibodies to rule out all the false positives.

Either way it is a HAPPY HCV FREE new year indeed!

[Lynn K]

Hi Eric I think they were both negative on the viral load so looks like they don't need any further testing they don't have hep c

[gnatcatcher]

chonji, I'm very glad you and your wife are fine. What troubles me is your doctor's seeming lack of careful wording about the difference between testing positive for the HCV antibody versus testing positive for for the virus itself.

IMO, a wise doctor, when a patient receives a positive result on the antibody test, would explain that the patient was at some point exposed to hepatitis C but might not still have it, so a further blood test would now be done to find out whether the patient's immune system had already gotten rid of the virus, in which case no treatment would be necessary because there would be nothing to treat. The doctor would address any worry by saying that if it turned out that the virus was still present, there are now easy treatments that take care of the problem in a matter of months.

Happy New Year!

Gnatty

[Mugwump]

Lynn my point was that both of them now cannot know for certain whether or not they actually have antibodies for HCV or if they have ever been exposed to HCV.

This is why a future antibody retest makes some sense for their peace of mind at least. I am almost willing to bet that at least one of them had a false positive antibody test and having both of them have a false positive for antibodies is also a distinct possibility.

In Canada if you test positive for antibodies you can no longer be considered for organ donation, or blood donor status and are flagged in the infectious disease registry which has mandatory checks for all our blood and organ donors.

A proven false positive ELISA HCV test can allow you to be removed from the infectious disease registry but you have to insist upon the retesting. An unfortunate state of affairs but this is still the level of stigma that is attached to HCV.

[Lynn K]

Ok good points depending about if they want to donate blood. Just good to know ithey are cured. I am not aware if I am on a registry here in the US. But we actually can donate organs here in the US especially if the recipient also has a hep c history. Also for those who need a life saving transplant a less than optimal organ can be an option if the recipient is willing.

I am not sure if stigma is the correct term really just medically necessary information. Not sure how that equates to a stigma. Is having a history of cancer for example which also likely make you intelligible to be a doner considered to be a stigma?

[Mugwump]

Lynn I was thinking of it from their point of view. There is still the question in their minds whether or not one or both of them were exposed to HCV and cleared the virus which is highly unlikely. A four fold lesser probability because according to their tests both were positive for antibodies and yet if this is the case they both were in the lower probability category of clearing the virus naturally.

I suspect that the ELISA test at the lab that did it in the first place was contaminated by shoddy workmanship brought on perhaps by poor testing sanitation of the lab equipment. It does happen especially in labs that cheap out and pay low wages to slightly less than qualified techs and then work the crap out of the staff to maximize the profits.

It is easy for those of us who have had the virus for years to forget how jarring the first confirmation of either exposure to the disease or confirmation of a viral load really was. The last post made by the OP chonji1226 says a great deal about how the fear of not knowing if you have been exposed can hang over your head like a sword of Damocles!

I just wonder how many people are out there who have a history of these false positive tests thinking wrongly that they have been exposed to HCV in the past.

The fact that those of us who have antibodies in our system cannot donate blood says it all about the stigma still attached to this disease.
 

[Lynn K]

Yes looking back I do remember how surprised I was to hear my liver enzymes were elevated and I was positive for Hep c anti-bodies. Back then there was no test for viral load. For me the only confirmation I had was the elevated liver enzymes.

 I still don't feel that calling in a stigma is really appropriate in that medically speaking they simply want to protect others who do not have hep c from the virus and the only way to do that is to prevent people who test positive for antibodies from donating blood for example. I don't feel stigmatized because I can't donate blood I understand it as a precaution to maintain a safe blood supply. But nonetheless it does leave you feeling like an outsider.

I was not aware there was anyway to prove or disapprove one way or the other if a person has cleared the virus on their own or not but if that is a possibility for them and they want to spend the money to try to find this out. But the good news is bottom line they don't have hep c.

I do agree it is decidedly odd two people without risk tested at the same time showed up as positive testing at the same time and processed at the same lab and the lab even apparently admitted to an error. That is the worst part of this story to me a lab telling people who are not infected they are then admitting it was an error of some kind.

[dragonslayer]

>> That is the worst part of this story to me a lab telling people who are not infected they are then admitting it was an error of some kind<<

To me, the really worst part of the story is a lab telling people who are not infected that they are and then NOT admitting it was an error of some kind!!

[andrew j]

The Dr.'s practice has admitted that there was an error of some kind, but the exact nature of that error hasn't been properly explained.

Given that there are now question-marks over whether these folks - you guys - tested positive for antibodies at all - or whether one or other of you may have tested positive - or returned a 'false-positive' test - the only way to really put your minds at ease is for you both to get another antibody test done (which, as Mugwump says, should have been offered to you as a matter of course!).

[chonji1226]

Just would like to provide an update:

1st week: HCV Anti-body test and HCV Viral load and genotyping (my doctor ordered both already since my wife was already diagnosed positive for HCV antibodies test)

2nd week: All results came back as positive, doctor referred us to Liver specialist

3rd week: Clinic called to say there was an error in the HCV Viral load testing

4th week: Took second test HCV Viral load and genotyping

5th week: Went to another doctor to get a second opinion, and he asked me to get another HCV antibody test

6th week: HCV Viral load came back as "undetected", HCV Antibodies test came back as postive

So...it seems I was exposed to HCV at some point in my life but the HCV viral load test came back as "undetected". Both doctors sounded quite optimistic and said nothing needs to be done at this point because I don't have the virus. But shouldn't they ask me to get tested again after 6 months to be sure?

I'm still shocked as to how I was exposed to the virus in the first place. Never got any blood transfusion, I donated blood a few times...never did drugs...my wife and I we are each other's only sex partner.

By the way, I'm a foreign worker in Canada.

[Lynn K]

For the record Hep c is generally not considered to be a sexually transmitted virus although for those who have multiple sex partners, engage in rough sexual practices or in the presence of HIV there is an increased risk.

Also you cannot become infected with hep c by donating blood. They do test for hep c antibodies among other blood borne illnesses so surprised they didn't pick up your positive antibody test when you donated blood. That was how I learned I had hep c by donating blood.

There are those who have no idea how they were exposed to hep c even those with confirmed infection. I suppose there is a possibility of a false positive antibody test as well. But in any event the HCV RNA test is conclusive you don't have hep c congrats

[Mugwump]

I am just beginning to wonder if more than 25% of people who are somehow exposed to this virus go on to naturally clear the disease. Or if there are other mechanisms at work here. 

Very puzzling. The only other answer I can think of is indeed there are reports that some individuals may have been exposed at birth and have a parent that never shows clinical signs of an HCV infection or clears the virus naturally. 

chonji1226, it may be prudent to retest for the presence of the virus in future to rule out an early infection, but it is highly unlikely that your exposure was recent.

There is still a great deal of uncertainty about how many people have been exposed to this virus somehow or exactly how many go on to clear the virus on their own. The probability of having had a false positive antibody test 10-13% so if the test was repeated the order of uncertainty of being positive for antibodies is much less. So in my way of thinking it is prudent for you to rule out being in the early stages of infection.

Here is hoping that somehow early stage pcr testing and more accurate antibody quantification evaluation becomes less expensive and soon. It would make this disease much easier for all of us to deal with: the companies currently making the kits are raking in obscene gobs of cash and deserve some serious competition. 

All the best
Eric

[andrew j]

You were exposed to Hep C at some stage (for whatever reason), and your body mobilised an immune response to attack [and in your case, destroy] the virus.

That immune response / antibodies remain measurable for the rest of of your life (for reasons I don't really understand) - but again (as Lynn says) - you don't have Hep C; your immune system destroyed it.
(That's why your VL came back 'undetected' - and why yr. Drs are 'optimistic'.
You don't need re-testing. You are no more likely than anyone else to get Hep C now).

(I guess there is a remote possibility that you were infected close to the time your VL test was conducted - but given that the antibody test was positive, and given that the positive antibody test came up unexpectedly (rather than in response to a 
perceived / tangible risk), the likelihood of that is, IMO, extremely remote).

Having said that - it is certainly strange that both you and your wife should unexpectedly test positive for Hep C antibodies - and that the lab should then make some sort of error.
Maybe another blood test in 6 months would dispel that strangeness, if nothing else?
..............

The only limitation you will face is that you can't donate blood.
... and, I guess - you want to know how you were exposed.

... Medical procedure? Dentistry? You worked in a hospital or medical facility at some time?
I don't know, of course.

[Lynn K]

Just as if we were immunized against a virus say for example the measles or were infected at some point with the measles virus we will always test positive for measles antibodies just as we will for hep c antibodies. Antibodies are not the virus they are a part of our bodies own immune system that are created by our bodies in response to a viral attack. The difference between measles and hep c antibodies is that while our immune system is able to protect itself from infection from the measles with antibodies unfortunately our antibodies are not effective against the hep c virus otherwise we would have been able to develop a immunization shot for hep c which at this point we have been unable to do.

That is why we have antibodies to protect against infection and that is why we carry them for life our bodies keep making them.

There are a number of people who don't know and wonder how they encountered hep c but unless you can point to a specific incident you will likely never know.

[Mugwump]

There is one other distinct possibility. You may very well have been exposed to a disease that creates antibodies that trick ELISA (the hcv antibody test). Especially if you have traveled and spent time in Africa and been exposed to some mild tropical diseases that are suspected of creating antibodies that trick HCV antibody tests. Who knows just maybe some other unknown agents predispose people to false positive testing for HCV antibodies.

If it is the case that you have been exposed to some other agent it is important that you relay this information to your new doctor. I am sure that they will want to know why you tested positive twice with no history of the known HCV risk factors.
 
Here is hoping that a standard hcv antibody test becomes better refined in the near future. And doctors will learn to stop scaring the crap out of people who may not have HCV by explaining the details of the diagnosis of HCV before a positive antibody test is encountered.

My doctor put me at ease about the testing procedure and this was in 1993. Unfortunately it seems that some physicians have lost their bedside manors when it comes to dealing with this disease and become complacent.

I sincerely wish all the best for you and your new family.

Eric 

[Lynn K]

Hi Eric

Re: "Especially if you have traveled and spent time in Africa and been exposed to some mild tropical diseases that are suspected of creating antibodies that trick HCV antibody tests." do you have a link for that this is the first time I have heard anything about other conditions causing false positive for hep c antibodies. I would like to read more about this topic.

Thanks

[chonji1226]

Never been to Africa. I have been to Israel, Egypt, US and Canada

So my wife's result also came back positive for antibodies but undetected for the viral load...so we have both have been exposed...how weird is that.

Anyway...clinic called 2 days ago to schedule me for an appointment with a liver specialist. Now I'm nervous again. Why would a liver specialist want to see me if my viral load is undetected  My appointment is on Jan. 26, I will let you know how it goes.

[Mugwump]

Interesting it seems that the prevalence of HCV in Egypt turns out to be much higher than elsewhere on the African continent.

"The prevalence range from 2%
in the developed countries through 6.5% in the parts
of equatorial Africa to as high as
20% in Egypt"

http://ayubmed.edu.pk/JAMC/PAST/22-2/Anwar.pdf
Lynn from what I can find there is only speculation about this possibility again there have been no studies to verify why this seems to occur frequently.

chonji1226
If you did not go there with your wife then both of your false positive tests are a complete mystery. I will tell you that the transmission of HCV in monogamous relationships is not common and not considered a risk factor. I hope your clinicians have already told you and your wife this.

As for them sending you to a specialist; It sounds as if they are as puzzled as we are and are just covering all the bases. If you have no other symptoms from a CBC and enzyme tests then they are counting on the specialist to recommend the next course of action, which is sensible. The specialist may do different immune assay tests or wind up being puzzled. Chances are the recommendation will be to repeat the HCV RNA test in a few months just to completely rule out early stage infections.

Please try to take it one step at a time and take joy in the most important part of the journey you are currently going through. HCV has interrupted many relationships please do not let it effect yours.

In good health for both of you and the child to come!
Eric
 

[Lynn K]

Thanks Eric

I was not aware of the frequency of false positives listed on the article of 16.92% involving 254 patients in Pakistan. That is much higher than I thought.

But this just reinforces the reasoning why antibody testing is only basically for screening and that the test for the actual virus HCV RNA by PCR must be done to confirm actual current infection.

I am surprised by the 17% false positives from whatever the cause but antibody test results don't matter. They only determine a possible exposure not a current infection. The only test that matters is the HCV RNA test.

I guess I will need to revise my thinking about having a positive antibody but no infection means the person was exposed and was able to beat the virus on their own. That false positives are apparently more frequent than I had realized.

I don't know if anyone can determine if a antibody test was a false positive or the result of an infection successfully fought off. But really in the big picture the end result is a negative HCV RNA test and a person who does not have hep c and therefore does not need treatment.

The reason for the positive antibody test to me it seems will remain a mystery.