Hep C Discussion Forum

Cinnamon Girl · Guru

RE: Hello! Not sure if I am infected or not? (kind of long)

Tig · Admin

Hey Commodore,

Congratulations! That's the kind of test results we love to hear about! Good luck...

Tig

Crossfitgirl · Member

Congrats. I understand the stress...I'm on day 13 of waiting. i should know by the end of this week.

thecommodore · Member

Well I got my tests result back today, finally, and my long nine day nightmare is over. I am negative.

biggrin

thecommodore · Member

longld wrote:
found this but much smarter people than I on this forum will comment:
Reactive hepatitis C virus (HCV) antibody screening results with signal-to-cutoff (S/CO) ratios of <8.0 are not predicative of the true HCV antibody status, and additional testing is recommended to confirm anti-HCV status. Reactive results with S/CO ratios of > or =8.0 are highly predictive (> or =95% probability) of the true anti-HCV status, but additional testing is needed to differentiate between past (resolved) and chronic hepatitis C.
Best to patiently (not sure what this word means!) wait for follow up testing.

That looks similar to something I read on the CDC website, and I think that particular standard depends on the equipment (or "kit") that was used. The graph used by the lab I was sent to suggests that it is borderline - 50/50 either way.

Huey · Guru

Hi,, and Best of luck,,, I was able to find out more about ware i got it from by research, You see, I have an older sister , "x- M.A.S.H. nurse" Vary older sister who told me that our mother had this when I was just 12. It was called Hep non a or non b. but now we know what it is and also that it has different Geno types. Well it turns out the geno- type I have has a unique characteristic and so by experience I know my mother had this characteristic . Also one study done on German woman shows how long it takes to show up with clinical shins. 35 years . and my mother got her virus from a blood transfusion done around 35 years ago. So this circumstantial evidence is not proof but a vary good clue.

-- Edited by Huey on Sunday 18th of May 2014 01:25:54 AM

thecommodore · Member

Thank you!

longld · Senior Member

your obsession in finding out the reason/source of the virus is common with HepC patients - I have often just wished I had Cancer instead....it is much easier to explain to everybody because we all know it just happens! While smoking and a few other things elevate cancer risk, innocent people get it. It just seems that Hep C people are never innocent to the uninformed. Hang in there - you have gained a lot of immediate friends who really understand everything you are going through!

longld · Senior Member

found this but much smarter people than I on this forum will comment:

Reactive hepatitis C virus (HCV) antibody screening results with signal-to-cutoff (S/CO) ratios of <8.0 are not predicative of the true HCV antibody status, and additional testing is recommended to confirm anti-HCV status. Reactive results with S/CO ratios of > or =8.0 are highly predictive (> or =95% probability) of the true anti-HCV status, but additional testing is needed to differentiate between past (resolved) and chronic hepatitis C.

Best to patiently (not sure what this word means!) wait for follow up testing.

thecommodore · Member

While I'm here and waiting, I do have another question: I was able to access records from my previous labs online, and I was curious about the graph I've attached below. It's my signal to cutoff ratio from my anti-hcv screening (7.20), and its placed halfway between the red area, which is labeled "high" (which I'm guessing means a high probability that this anti-hcv is accurate, and the white area, which is not labeled, but I'm guessing means "normal," or some such thing.

Any thoughts?

thecommodore · Member

Some good news: My girlfriend of the past three years, with whom I have had a monogamous relationship where we have not used condoms, had an anti-hcv screening come back not reactive.

From what I've read, there seems to be some disagreement over whether ordinary sexual activity (not involving blood) can transmit the hcv virus. If it does, then I haven't made good use of my numerous opportunities to infect my girlfriend if I am, in fact, infected myself.

Blood was drawn on May 9th to determine if I am infected, and if so, what the genotype is as well as the viral load. Still no answers. My guess is that I will find out either way sometime next week.

In the meantime, I was able to access my previous records from the lab online, and this image is curious to me. It's a graph of my signal to cutoff ratio (7.20), and it's plotted right on the border between the red area, which is labeled as "high," and the white area, which has no label, and I assume means normal. Does anyone have any idea how I should interpret this?

I am proceeding now as if I am infected, reading about different medication options that may be available to me, and I have an appointment with an infectious disease specialist on Monday (even though I may not have my test results yet), because I have a **** ton of questions for him. If there is a blessing to any of this, I guess it's that I picked a good time to find out I was infected, because since a breakthrough in treating hcv has taken place within the last year or so - particularly with the FDA's approval of Solvaldi - I might just be able to be free of this bastard in as little as 12 weeks! So while the past week has been an ordeal I wouldn't wish on anyone, I do feel blessed by the timing, if that makes any sense.

I hope you're all having a great weekend! smile

-- Edited by thecommodore on Saturday 17th of May 2014 09:45:49 PM

thecommodore · Member

Thanks! smile

Isiscat2011 · Guru

thecommodore wrote:
I also understand that in up to about a quarter of Hep C cases, the body can clear the virus out on it's own, and if that was the case, the aforementioned antibodies would still show up on the first screening, but that brings me back to my initial question of how this could be since I do seem to be low on the risk scale.

There are many people who will never know how they contracted the disease and initially we all go through the same mental processes of trying to figure out how it could have happened. The day I was diagnosed (and actually for a few weeks following that day) I mentally ran through every possible risk situation. The first thing that came to mind was my sexual history. I wondered if I would have to call everyone I had ever had sex with to find out if they had it and advise them to get tested. I began to make a mental list of my previous partners and quickly discovered I would need to count on my fingers. When I ran out of fingers and started counting on my toes I realized two things: 1) I was quite the tart in my younger years, and 2) this was an exercise in futility.

Then I thought about the cute little tattoo I had placed on my ass back in the 80s. Had it come back to haunt me? How about all those manicures? Was I paying for them with my health? I'd never used IV drugs but I had snorted cocaine a couple of times. And, on and on.

The only person I know in my life who has HepC is my brother and he probably contracted it during his military service back in the early 70s. We share the same genotype as well as HepB antibodies, and he has liberally used my razors to my chagrin (before he was diagnosed) so that is a possibility. I figured he is going to owe me big time for this one! This is far worse than the time he pulled out my favorite teddy bear's tongue (just to torture me) when I was 6. It is possible we could have gotten it at birth but that seems unlikely and, in any event, we aren't about to put my near 80 year old mom through the ordeal to find out if she is a carrier.

You get the point. I think there are stages that people go through when diagnosed with a serious illness and the first one is probably shock. Eventually, we get to acceptance and then the only thing to do is to deal with it as best we can. I already said this, but we really are fortunate to have such promising treatment options in our near future.

I have only been living with this diagnosis for 3 years, but many have lived most of their lives knowing not only that they have the virus, but also that there was very little they could do about it. I can't even imagine how difficult this must have been for them.

Hang in there! Everything will be ok.

thecommodore · Member

Thank you both for your replies. I have been reading up on the medication regimens available, particularly Sovaldi, and it does put my mind at ease should my tests come back positive. I'm curious how many of the drugs out that can "cure" you of Hep C, yet there is still no vaccination for it, as there is for Hep A & B.

Be that as it may, I thought of another situation that may or may not apply to me as it pertains to Hep C screening.

In 1993, I was donating plasma for extra money, and had been doing so for about two years. Each time I went in to donate, they screened you for a variety of different diseases, including Hep C and HIV. Well one day, the initial screening - which at that time at least was much like the initial screening for Hep C, where they look to see if antibodies are present - showed that I had antibodies in my system for HIV, and they told me I could not donate plasma ever again, and they urged me to get tested. Now this shocked me as much as my screening yesterday for Hep C, as I was definitely not in any risk category - I had never had sex with a man after 1977, I had never traveled to sub-Saharan Africa, never shared needlesnone of the risk categories. Not even close. I went and got an HIV screening, and thankfully, and predictably, it was negative.

But how the heck did those antibodies show up on the initial screening??? Well it turns out that about four months earlier, I had the gall bladder surgery I mentioned in my first post. It was quite an ordeal. My gallbladder had become gangrenous and I needed emergency surgery to have it taken out - and they had to open me up to do it - the old fashioned way. The technology (robotics?) existed and was in place where they could have made a couple of small incisions and removed the sick gall bladder, which would have involved much less pain and a much shorter recovery period. Anyway, a nurse acquaintance of mine told me that what probably happened is that the antibodies that my body created to fight the disease that was attacking my gall bladder were what probably tripped the HIV screening, as they are the same kind of antibodies the body will produce to fight the onset of many different viruses, including HIV. Now I haven't had any major surgery since then, but could these antibodies still be in my body more than 20 years later? Or the fact that they were once there?

I also understand that in up to about a quarter of Hep C cases, the body can clear the virus out on it's own, and if that was the case, the aforementioned antibodies would still show up on the first screening, but that brings me back to my initial question of how this could be since I do seem to be low on the risk scale.

Isiscat2011 · Guru

thecommodore wrote:
But what bugs me about this is I don't seem to fit the profile of someone likely to be infected. Of all the risky behaviors I've engaged in, my risk factors seem to be near or at the bottom of the list. The most recent risky sexual relationship I can think of was 13 years ago when I was with someone who had one or two fairly modest tattoos. Of course you can never really know, which is why my doctor and I are taking care of this, and it is possible, but it just doesn't make sense that I could be infected.
Am I wrong? If I am, what else could be going on here?

-- Edited by thecommodore on Saturday 10th of May 2014 09:29:53 AM

Welcome, Commodore:

This was my initial reaction too. I eventually came to the conclusion that it doesn't matter how you get it; the important thing is how you get rid of it.

I personally think that far more people who do not have the listed high risk factors have HepC and we will be hearing more about this in the near future. More people will be tested and more who do not have high risk factors will test positive. It makes sense to me that blood to blood contact during sex (without rough sex) happens with some frequency. All it would take is an open cut anywhere on the body touching the infected blood.

There is an extremely high incidence of HepC in the veterans population because of the careless inoculations programs the military has utilized. I also think the disease spread easily via medical and dental procedures before we all became more careful.

Through the media governments tend to marginalize people who carry infectious diseases, when there is no good way of treating it, for the very practical reason that they don't want to panic the general population.

In any event, effective and safe drugs are arriving on the market to treat HepC. If you do have it it isn't the end of the world. Hang in there and let us know how you are doing.

-- Edited by Isiscat2011 on Sunday 11th of May 2014 01:17:29 AM

Cinnamon Girl · Guru

Hello, and welcome to the forum!

Yes, you`re right, the first screening test would be to test for the presence of Hep C antibodies and as that came back positive you`re having further screening tests to find out whether in fact you have an active infection. Having a positive result to the antibodies doesn`t necessarily mean you have an active infection so please don`t get too alarmed. It does indicate that you`ve probably have been infected with Hep C at some point although your immune system could have cleared it spontaneously, and sometimes it`s possible to have a false positive result too.

If you do in fact have an active infection then it`s really not as scary as it first seems as this is a very treatable disease nowadays with very effective treatment options available. I can understand your confusion about the risk factors and although Hep C isn`t easy to catch it can be transmitted via any activity that involves `blood to blood` contact, which can include getting a tattoo, dental work or surgery if the instruments used have any traces of infected blood left on them. Catching Hep C through sex is extremely rare and almost non-existent, although as you said there is some degree of risk if blood is involved. Some people never know how they caught the virus.

Try not to be too alarmed at this stage, wait for your results and then take it from there. Do keep in touch and let us know how it turns out. Best of luck! smile

thecommodore · Member

Hello, and thank you all for having me in your forum.

Here is my situation:

I am a 51 year old male, and today I learned that I may have Hep C. I am otherwise in good health, but blood work done after a routine checkup in March showed me with slightly elevated bilirubin - 1.6 when the "reference range" is between 0.2-1.2 mg/dL. So my PCP set up a screening for a Hep C test, that she told me today was "positive." Now this freaked me out just a bit, and I was overwhelmed and confused, and I didn't know what questions to ask. Some more blood was drawn, and my doctor told me she would refer me to an infectious disease specialist.

When I got home, I took to the net. I first looked to see if I was in a high risk group for Hep C. I looked at several sources, mainly the CDC and NIH, as well as a few other articles, and I don't fall into any of the main risk groups, as listed here by the CDC:

Current or former injection drug users, including those who injected only once many years ago
Recipients of clotting factor concentrates made before 1987, when more advanced methods for manufacturing those products were developed
Recipients of blood transfusions or solid organ transplants before July 1992, when better testing of blood donors became available
Chronic hemodialysis patients
Persons with known exposures to HCV, such as
- health care workers after needlesticks involving HCV-positive blood
- recipients of blood or organs from a donor who tested HCV-positive
Persons with HIV infection
Children born to HCV-positive mothers

I have seen engaging in "rough sex" or anal sex listed in some places, with the former seeming to be defined as any sexual activity that could lead to bleeding. For me, neither one fits. There was one time, however, in 1985 (29 years ago) when I had sex with a girlfriend who was on her period, and that did get pretty bloody (sorry if I grossed anyone out, but it may be relevant). On a small handful of other occasions, I had sex with women who were nearing the end of their period, and not much, if any blood resulted.

I have also seen having unprotected sex with someone who is infected listed in some places, though the consensus seems to be that while it is possible you could be infected that way, it wasn't likely. I have been in a monogamous relationship for almost three years now, and we stopped using condoms about just over two years ago. We're both in our early 50's, the chances of conceiving are pretty remote, and neither one of us had really been sexually active before we got together for the previous several years.

I was quite sexually active when I was a young man for about two or three years when I was in my late 20's, and most of the time I used protection, but I will admit not every time. My current gf was nowhere near as prolific as I was.

I did have a major operation when I was 31 (20 years ago) when I had my gall bladder taken out. I also donated plasma for a time in the early 90's.

Finally, my blood pressure was very high earlier this year. But thanks to meds, more vigorous exercise, and healthier eating, I have it down to a safer level (still a tad higher than I would like, but I'm not in the danger zone).

Now from what I've read, it sounds like that first Hep C screening revealed HCV antibodies, and that I was further given a screening to see if I do, in fact, have the HCV virus. That seems to fit.

But what bugs me about this is I don't seem to fit the profile of someone likely to be infected. Of all the risky behaviors I've engaged in, my risk factors seem to be near or at the bottom of the list. The most recent risky sexual relationship I can think of was 13 years ago when I was with someone who had one or two fairly modest tattoos. Of course you can never really know, which is why my doctor and I are taking care of this, and it is possible, but it just doesn't make sense that I could be infected.

Am I wrong? If I am, what else could be going on here?

confuse confuse confuse

-- Edited by thecommodore on Saturday 10th of May 2014 09:29:53 AM

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