Ultra low risk and yet positive antibody tests. How??

Question

Hi all,


Firstly, apologies for how long this is. 

Sadly I was a victim of sexual assault in Sept 2018 which led to me having to have a full screening of tests as a precaution at a sexual health clinic and to also put my mind at rest as my mind had gone into overdrive. 3 days later, I had a phone call to say that my Hep c antibody test had come back positive.

The clinician explained it could be a false positive and that I needed a second test (didn't explain which test) but did explain it was unlikely the infection would have come from the assault as test was taken 2 days after the assault and infection period is usually longer. 
I returned to a different (more local) sexual health clinic and advised them I was there for another hep c test and another set of swabs etc due to it now being 2 weeks after the assault. All was clear but the hep c antibody test once again came back positive and stated I needed further testing.

I asked the clinician how this was possible due to never using IV drugs (or any drugs for that matter), I've always been in a same sex (female) relationship, yes I have worked for the ambulance service but never had a needlestick injury.
The only thing I could think of was that I received IV treatment in Egypt whilst on holiday due to dehydration. 
I had a 10-15 minute run of saline. 
I asked what should I do now etc as I had never expected this. He explained that he wasn't a specialist in Hep C as not a usual screening test for sexual health but he would contact his colleague who was more knowledgeable. 

He later contacted me and said he had spoken to his colleague and that the antibody test is extremely sensitive so considering my background, it was highly unlikely to be a true positive and told me to leave it there and that he was sorry they had worried me. 

After a year or so, I started to think more about the Hep C tests and discovered I should have had a Hep C RNA/PCR test to confirm if I had the virus or not. I requested a doctor to contact me from my local GP surgery.

The doctor contacted me to tell me once again, I was extremely low risk and they would do a liver function test to put my mind at rest.... If all okay - move on with your life!

All was fine with my liver function. I moved on until recently when I was concerned about some yellowish appearance in my eyes. 

I've since seen a doctor who explained they will need to re-test me for antibodies before referring me for further tests, as the tests I had at the sexual health clinic don't show up on their system.


I am absolutely terrified right now as the Hep C virus is something I never thought I would have to ever think about. 

And what I forgot to add is that I have pretty bad OCD so I watch everything like a hawk. I was diagnosed with OCD in 2001 (15 years old) , so since then, I couldn't have been safer in my OCD bubble. 
Apart from the IV treatment in Egypt which all looked like single use equipment from what I can remember, I literally have absolutely no clue how I would have been exposed to the virus.

I can't help but think I've been fobbed off by some professionals because they've taken one look at the OCD history and figured I'm just 'over thinking' once again. 

I've also been in touch with the hepatitis c helpline UK, they were very helpful but couldn't believe that I've been left to just accept it's a false positive with no proven results. 

So Monday morning I am being tested at my doctor surgery for the antibody test, which no doubt will be positive again and then wait for a referral to have further testing elsewhere (will probably take forever due to Covid-19 outbreak)

My questions are:

Has anyone else experienced so much fuss and confusion with this virus?

How likely is a false positive twice?

Why is it so difficult to get my GP to refer me for an RNA test?

Has anyone else been in this position of having absolutely no clue where this has come from?

My OCD head has always, in my mind, kept me safe and I've always assured myself it's pretty tricky to get BBV's with the lifestyle I have. Now this has happened, I fear my OCD will go into overdrive as I was extremely cautious and yet  I still managed to potentially catch this.

Some reassurance that everything will be okay would be fab right now. My family and partner keep saying "I'm pretty sure you haven't got it." but I know that science doesn't lie often and they're also probably going down the 'you're over thinking' route. 

Feeling very scared right now.

Any info would be appreciated.

Many thanks, 

K

Xx

flyinlynn · Answer

So happy to see you finally got a definitive answer and the answer was good news. Thanks for the update!

Congrats and have a great life ;-)

flyinlynn · Answer

Well your doctor is correct in that it is highly likely you don’t have hep c but I can certainly  understand a normal desire to make certain you are not infected given your varying results. Glad to hear your finally getting the HCV RNA by PCR testing. My results usually took about a week to 10 days to come back due to the nature of the lab procedure. But anyway you should know for certain your status soon. Best of luck

flyinlynn · Answer

Also

“ uk's top five things an employee should know about their health and the workplace: You are not duty-bound to reveal an illness or health issue to your employer. ... If your contract of employment specifically says you must tell your employer about any condition that affects your ability to do the job, you must tell them.”

https://www.mirror.co.uk/money/jobs/you-tell-your-boss-youre-6666746

flyinlynn · Answer

Found this about UK medical privacy laws equivalent to USA HIPPA laws

“ HIPAA is a US regulation it stands for Health Insurance Portability and Accountability Act (HIPAA). In the UK and the NHS we call it the Data protection act. In data access regulation we often talk about operating on a 'need to know' basis.

https://sdr.co.uk/what-is-hipaa-compliance/

flyinlynn · Answer

Yeah it’s hard for anyone dealing with an unexpected possible diagnosis of something that sounds very scary. From your last sentence it sounds like your coming to terms with your present situation. One way or the other this will be behind you soon. Things are lightyears ahead of what you would be looking at if you were diagnosed with hep c just 6 years ago.

Take a breath this too shall pass. For perspective what were you worried about a year ago? I bet you can’t remember and even if you can I’m willing to bet your worst fears were not realized.

“Worry does not empty tomorrow of its sorrow, it empties today of its strength.“

flyinlynn · Answer

Assuming you have hep c and once you are cured you no longer have hep c do nothing needed to tell your dentist etc. However one would hope health care professionals would be concerned other that to take appropriate precautions if you were currently infected. In fact that is what the should be doing with all patients all the time anyway, taking appropriate care to avoid transmission of blood borne viruses. 

Are you in the US? We have privacy laws here you do NOT ever have to inform your employer why you are seeing a doctor. Only that you have an appointment. 

Assuming you need treatment you don’t necessarily need to see your doctor at all. Possibly a first appointment. But other than that just getting periodic blood tests from a lab somewhere near you and have those results sent to your doctor to track your treatment progress. 

I needed almost no time away from work during this last treatment. During one of the older treatments I got pretty run down so I took 2 weeks off on family medical leave. I was getting one self administered injection of interferon along with a drug called ti I iron which has a side effect of making many people become very anemic. Some of my friends noticed I looked very pale because my hemoglobin was so very low.

The old interferon treatments were 24 weeks with self administered shots once weekly along with other pills. Basically you felt very run down for six months and the odds of success were around 35%

My friends knew I had hep c. I worked as a machinist which is a job where sometimes you can get injured and bleed a lot do I wanted my friends to be safe if I should get injured on the job. I think if you approach with the feeling you will be stigmatized that is what may happen. I never really worried about it and never felt stigmatized. It’s just a health problem like many others.Would you feel stigmatized if you had the measles the flu or cancer? Truthfully even people with cancer find friends pulling away from them because they are sick. I think it’s just a human nature thing.  

And yes hep c is not easily contracted. For one it is blood borne. Hep c infected blood must enter the blood stream of an uninfected person. Also only about 4 percent of the population  in the US even have hep c so the likelihood of encountering someone with hep c is relatively low.

flyinlynn · Answer

Here is an article about false positives

“ Why Hepatitis C Tests May Give False Results

While generally accurate, the standard hepatitis C test is still subject to false negatives and false positives.

In the vast majority of cases, the result of the hepatitis C virus (HCV) test is definitive, accurately stating whether an individual has contracted the virus that can cause serious liver damage over time. However, in more rare cases false positive results occur—when someone tests positive but is not actually infected. Then there are false negatives, in which someone tests negative but actually is carrying hep C. In the event that either scenario applies to you, here is some information to help explain each phenomenon.

First a bit about the two main kinds of hep C tests and how they work. The initial test that is typically used is called an enzyme-linked immunosorbent assay, or ELISA, screen. It looks for the antibodies to hep C that the immune system develops in response to an infection. Second, there is a hep C RNA test, which detects evidence of the actual virus in the bloodstream. The RNA test is more expensive to conduct, so for general screening purposes it is typically only used as a confirmatory test: If an ELISA tests positive, an RNA test is conducted to either confirm or deny the actual presence of an infection.

Natural Clearance:

Approximately one in four people who contract hep C will clear the virus on their own.  When tests are taken after this process is complete, the ELISA will test positive while the RNA test will come up negative.  These contradictory results happen because the antibodies to hep C remain in the body even though the virus itself is gone. Research suggests that someone who spontaneously clears the virus has no greater risk of liver disease or death than someone who never had the virus.  (Hep C raises the risk of both outcomes.)  It is highly unlikely that someone who has cleared the virus will have the capacity to infect others with the virus after doing so.  Spontaneous clearance does not mean someone is immune to reinfection with hep C.

It is very difficult to determine whether someone has spontaneously cleared the virus or is testing false positive for another reason.  

False Positives:

A false positive occurs when the ELISA test comes up positive for hep C antibodies, but the person taking the test was never exposed to hep C virus, which leads the RNA test to read as negative.  

The problem is that antibodies that the immune system has produced to combat infections other than hep C can be what’s known as “cross-reactive”: The ELISA winds up picking up on these antibodies’ presence and incorrectly coming up positive. Research has shown, for example, that people are much more likely to test false positive if they’re living in areas of Africa where exposure to infectious diseases such as worms is more common. “There are a myriad of things than can infect you, particularly in areas where you don’t have a lot of sanitation and clean water,” says Oliver Laeyendecker, PhD, an infectious disease researcher at the National Institute of Allergy and Infectious Diseases.

Those who test false positive, regardless of the reason, will likely continue to do so for the duration of their lives. So in the event of future hep C exposure, an RNA test will be needed to accurately diagnose an infection. Major risk factors for contracting hep C include: injection drug use, including steroids; the sharing of needles, syringes or other injection materials; needlestick injuries in a health care setting; tattoos or piercings performed with non-sterilized equipment; and condomless sex among HIV-positive men who have sex with men (MSM).

There is also always the rare possibility of lab error leading to a false positive or a false negative test result. 

False Negatives:

Just as with testing for HIV, a false negative occurs during what’s known as the “window period”—the time after infection but before the immune system has developed antibodies. For hep C this is about four to six weeks. During this period, because there is no antibody to detect, the ELISA will come up negative. However, an RNA test will identify the presence of the virus, especially considering how highly sensitive that test is and how quickly the virus multiplies to high levels in the body.

Those with suppressed immune systems, including those with HIV, may be more likely to test false negative because of their diminished capacity for developing antibodies.

The crux of a false negative scenario is that in most cases only an ELISA test will be conducted, thus missing the chance to diagnose the virus accurately. Considering that medical guidelines recommend only a one-time test for many demographics, this could be the difference between identifying the virus early and waiting until decades have passed and liver disease prompts another test.

So if you have had any potential recent exposure to hep C, it is a good idea to get retested for hep C with an ELISA test after three months have passed or to obtain an RNA screen. Hep C risk factors are listed in bold above.

Another test that may indicate a new, also known as acute, infection with hep C is the alanine aminotransferase, or ALT, liver test. An irregular result, which is likely to occur before the development of hep C antibodies, may indicate an infection with the virus. This is hardly a foolproof method of detection, however, since ALTs can elevate for all sorts of reasons and because perhaps more than half of those with hep C will have a normal read.”

flyinlynn · Answer

You will likely test positive for hep c antibodies for the rest of your life. Whether your positive antibody test is a result of actual infection, a previously resolved on its own infection, or some other benign factor in your blood causing the positive antibody result. About 25% of people beat hep c on their own any may not even know they were infected. There is a percentage of patients who aren’t sure how they contracted hep c even those who test positive for the virus.

The standard testing protocol is to wait 12 weeks after a possible exposure and have the hep c antibody test, if the antibody test is positive next thing would be to automatically have a blood draw for the HCV RNA by PCR that tests for the actual virus in the blood which will confirm current actual infection or that no infection exists. 

General practitioners may not be totally up to speed on hep c testing protocols.

Also, I’ve heard that often only one blood draw is required. If the sample tests positive for hep c antibodies the remaining sample is then tested for the hep c virus.

I don’t see any dates for those tests you’ve had in the past. I don’t recall exactly but I believe there was no HCV RNA testing until the maybe mid 90’s or possible early 2000’s. Back when my hep c was diagnosed in 1990 it was only in the basis of a positive hep c antibody and elevated liver enzyme tests.

Bear in mind however, that the meds approved since 2014 are very effective at treating hep c. Treatments are much better tolerated than the previous treatments which I underwent in the 90’s with no success. The new treatments are also very effective at curing hep c in about 98% or better for those who are relatively recently infected, who have not previously treated, and have less liver damage.

In my case, I was infected for 37 years before I was finally successfully cured of hep c. Unfortunately, I was diagnosed with liver cirrhosis after being infected for 30 years.

So if someone like me, having undergone 4 previous treatments, having serious liver disease both of which put me in the category of most difficult to treat, with all that I was able to be cured.

Bottom line, you will know soon if you are currently infected or only have antibodies. If you are currently infected you can take one of the new meds that will very likely cure your hep c. Treatment can be as simple as one pill a day for 12 or possibly as few as 8 weeks and you will be able to put this in the rear view mirror. 

So either you don’t have hep c at all and just antibodies or if you are currently infected with hep c you will be able to treat and cure your hep c. But either way you don’t have anything to worry about.

Best of luck

Ultra low risk and yet positive antibody tests. How??

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