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Author Topic: Hello! New member, with a question about whether or not I am infected  (Read 24638 times)

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Offline thecommodore

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Hello, and thank you all for having me in your forum.  I realize this post is long, but I need to get this off my chest, so I thank you all for your indulgence.

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 while it is certainly possible, it just doesn't make sense that I could be infected. 

EDITED TO ADD THE FOLLOWING:

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 needles…none 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 above.  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.

Thank you again for hearing me out.  :)
« Last Edit: May 10, 2014, 03:29:15 pm by thecommodore »

Offline Mike

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Hi TC,

The next step, and it sounds like the doc has taken it, is to check for a viral load. If the virus is present, you have Hep-C.

Here's some basics: The greatest risk for Hep-C infection is being born between 1945-65. This group has the highest infection rate in the general population.

Surgery can be a risk factor as can be unprotected sex.

In analyzing your story, I would say, if you are infected, unprotected sex with a partner menstruating would most likely be the mode of transmission (provided that individual had the virus).

This would make sense, since blood was present, and the piston motion of a penis during intercourse could result in blood being pushed in to the urethra tube, resulting in direct, internal exposure to the virus.

Regardless of the mode of infection, however, the important thing to know is that there are new, very effective treatments available with very high success rates.

Being diagnosed with Hep-C is a bummer, and will certainly churn up some emotions.

The first thing to find out is if you actually have the virus. Once confirmed, there are a lot of treatment options, which depend on the viral genotype, the quantitative viral load, presence of liver damage and so on.

Your doctor will help you through this and determine the best, individualized treatment options for you.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Sorry to have to welcome you here, but glad we have a place where you can discuss this. Mike is right. Your age is risk factor enough. 10% of routes can't be identified, but we suspect unintended medical transmission (dentist, etc.) As for the + Hep C test while attempting to donate plasma in 1993 - the test came out in July 1992 - you likely had hep C for a long time, but they couldn't screen for it effectively until late 1992. Yes, these antibodies (and the virus) could have been with you for decades without you knowing it. Yes, you may have had spontaneous clearance of the virus, but the fact that your bili was up suggests something is up. However, it is possible you cleared it and have a different problem. So, the next step is to find out. Please let us know and we'll walk through this with you. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline thecommodore

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Interestingly enough, my bill was down within the normal range on the screening that found the HCV anti-bodies.  I know it's possible for this to happen even when you are infected, but it's noteworthy all the same.

Hopefully the results telling my one way or another come back soon.  I'm doing my best to stay positive.

Thanks for your replies Mike and Lucinda.  :)
« Last Edit: May 12, 2014, 04:32:48 pm by thecommodore »

Offline thecommodore

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So I met with my doctor today after I picked up a copy of the lab report.  The report was, in fact, a Hep C antibody screening (which was part of a large battery of tests called a Comprehensive Metabolic Panel), with a Signal to cutoff ratio of 7.20 H, when the reference range is <1.0.  But doctor continued to call it a "positive" test for HCV, as she did Friday when she said I had tested positive for Hepatitis C.  I don't mean to parse words, but at this stage, there seems to be a big difference between saying someone has HCV antibodies present in their bloodstream and saying they have tested positive for the virus.  The former does indicate that the virus was at least present in the bloodstream at one time, I get that, but I think I would have been less alarmed (and my gf too when I told her) if she had been more clear about what this lab work said.

In addition, the doctor said that the virus can be transmitted sexually, through semen, and vaginal fluids, and she suggested that this could be done independent of blood,when everything I have read has stated that this is either not common or rare. 

She also seemed to avoid the question of whether HCV can be cleared by the body on it's own.  That's weird, in my view, as that seems to happen in about 15-25% of people who are infected, from what I understand. 

By the way, my bilirubin, which was 1.6 on my first lab report (reference range is 0.2 to 1.2 mg/dL, was 1.0 on this most recent report, which showed HCV antibodies.  Also, my AST was 24 U/L (ref range 10-35), and my ALT was 28 (ref range 9-46 U/L).  They were 21 and 29, respectively, on my first lab report, a LIPID Panel.

So I'm glad I'm going to be seeing an infectious disease specialist soon, as this is definitely a situation that calls for a second opinion, and I don't think I'm getting accurate info from my doctor.  I understand that there still is a possibility I could be infected, but that remains to be determined, and if so, how badly (i.e. the viral load).  For what it's worth, I'm encouraged that my billy's are down, and that the AST and ALT's remain good.  I've been eating much better over the past two months since I learned I had very high blood pressure (another story, but that's much better too, thanks to a lower sodium diet that includes lots of green leafy veggies, fruits, nuts, and other healthier options).  So we'll see what happens.

Offline Mike

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Hi TC,

I'm not a physician; but I have studied Hep-C for over a decade. It doesn't seem like your GP is up on Hep-C - other then she knows it impacts the liver.

The specialist should  be on the ball and answer your questions.

Liver enzymes can fluctuate a bit and elevated test is not always due to the liver - a bruise, exercise, vigorous activity can elevate ALT and AST levels. However, if the levels are 1-2 times higher then the reference standard - there may be a problem.

You need to have a qualitative or quantitative viral load  test completed. This will confirm if you have a Hep-C infection.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline thecommodore

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  • Posts: 18
I should have mentioned that blood was drawn for the viral load on Friday, and I should have the results by the end of the week. 

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
I am holding vigil with you - hope you don't have it, but the uncertainty is its own burden.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline thecommodore

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  • Posts: 18
Thank you Lucinda.

Offline thecommodore

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I also want to come back to something I mentioned in my first post. And it's a simple question:

Is it possible that the antibodies for the infection I had with my gallbladder before it was removed (which tripped an HIV screening back in 1993 when I was donating plasma) were the antibodies that showed up on this first HCV screening?

Offline lporterrn

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  • LucindaPorterRN
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This isn't enough information to speculate, but if you had said, "Is it possible that the elevated liver enzymes for the infection I had with my gallbladder before it was removed (which tripped an HIV screening back in 1993 when I was donating plasma) were the test that showed up on this first HCV screening?" Then I'd say yes, it is possible, although doing an HIV test for that isn't routine.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline thecommodore

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Another factor to consider: I had a flu shot on December 12, and apparently, antibodies from influenza vaccines can cause false positive antibody screenings for HCV, as well as HIV, and other viruses.

http://cel.webofknowledge.com/InboundService.do?product=CEL&SID=1EfvVGFTcjy1jQPO5uu&UT=A1992JK12900028&SrcApp=Highwire&action=retrieve&Init=Yes&Func=Frame&SrcAuth=Highwire&customersID=Highwire&IsProductCode=Yes&mode=FullRecord

Offline Mike

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Hi TC

You need to wait and see if the viral load test is positive. Hopefully, it is not. If, however, it shows the virus is present, you have an active Hep-C infection; period.

The important thing to remember, is that there are new, highly effective treatments available if the infection is confirmed.

You'll need to wait for the test results to come back to know your status.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Mpetrecz

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  • Posts: 50
Wishing you the best the commodore.  You can make yourself crazy wondering where you could of been exposed.....if you have hep c.....then you have hep c. The important thing is if you have hep c.....there is treatment.  You'll be ok.  My doc told me 3 out of 10 people have it and don't know they are infected.  People of all walks of life can and are infected.  There is a terrible stigma with this disease and it's unfounded.  Most of us becam infected through innocent ways...not drug use or crazy sex. 
Follow up with hep docs and let us know....hoping you are fine....and if you aren't, it's still ok.....it will be ok.

Offline thecommodore

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  • Posts: 18
Thanks for your support.

This is such a mindf*ck...
« Last Edit: May 14, 2014, 07:41:49 pm by thecommodore »

Offline thecommodore

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  • Posts: 18
I forgot to mention some very good news:  my girlfriend,  whom I've been with monogamously for three years, and with whom I've had sex without a condom during most of that time, and who is also in a low risk category,  found out earlier this week that her anti-hcv screen was not reactive.

So, while ordinary, non-blood inducing sexual activity is believed by many to be a low risk for transmitting hcv, there are those who say otherwise,  and if that is the case, if I were infected,  I had plenty of opportunity to infect my gf, but to no avail.

Just some insomniac ramblings you can take as you wish while I wait for my RNA lab (blood taken 5-9) which will determine if I am indeed infected,  and how badly.  Take it as you will...

Have a great weekend everyone!  :)

Offline Mike

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Hi TC,

I'm sorry you're losing sleep over this. I'm remember when I was diagnosed and waiting for the RNA confirmation test. I was scared, lacked knowledge about Hep-C and thought I was dying. These are normal reactions.

You should get your test results next week and my hope is that you're negative and can immediately put this behind you.

Please understand, however, that if the test results confirm an infection, you have some great, short treatments and should be able to clear the infection in 12 weeks.

I know this will be hard to understand; but this is the golden age to have Hep-C. The treatments are so, so effective and very tolerable.

When I was diagnosed, the best treatment available was a clinical trial for PEG Interferon and Ribvirin x 48 weeks, which gave me about a 30% chance for clearance. The treatment was horrible and I failed. I had to wait another 15 years for what is available now. And what's available now is Solvadi - a miracle drug!

My hope for you is that you don't have Hep-C - you're hope is that, if you do have it, the treatments to clear this virus are so effective you'll be cured!

Best wishes TC and I'll say a prayer for you, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline thecommodore

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Thanks Mike, and thanks everyone for putting up with me as I try to make sense out of something I may not be able to make sense of.  I have been thinking about it, and you're right, this is sort of a "golden age" in hcv.  Perhaps I should consider myself "lucky" if - God forbid 1000 times - I turn out to be infected, because the recent breakthroughs in treatments available mean I could very well be free of this thing in as little as 12 weeks, as you say. 

Not being infected at all would be a better blessing, of course, but I guess that's in God's hands now.

Offline thecommodore

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While I'm waiting, I was able to access my previous lab work online, including the anti-hcv which came back as "reactive."  It included the following graph, where my signal to cutoff ratio (7.2) was plotted, and it is right on the border between the red area labeled as "high," and the white area, which I assume means "normal."  Does anyone know how I should interpret this?

Thanks!


Offline Mpetrecz

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Nope, I don't know waht that means,  with me, I had regular blood work and the liver enzyme came back slightly elevated.....and my mammo back with breast cancer. She checked further and found I had hep, but cancer is scarier....so I had surgery and am cancer free for 8 years and will soon be hep free.  That was a scary time.  Now the entire thing is almost over,
Hang tight TC......m husband doesn't have hep c and his mom and I both have it.....the hep I have is obviously harder to get then a lot of people think it is, my husband and kids don't have hep....what can I say?  We've lived as a family does sharing food and drinks....my husband and I share a whole lot more.....and I'm the only one with hep.

Offline lporterrn

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  • LucindaPorterRN
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Your antibody results are borderline and hep C can't be interpreted without further testing. When will you be getting the confirmatory results?
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline thecommodore

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Your antibody results are borderline and hep C can't be interpreted without further testing. When will you be getting the confirmatory results?

I live in California, and apparently state law says that test results like these are not released until 14 days after the "date of collection," so the doctor can review them.  So since my blood was drawn on May 9th, I guess that means I'll be getting them on Friday the 23rd.
« Last Edit: May 19, 2014, 05:08:53 am by thecommodore »

Offline thecommodore

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I.
Am.

NEGATIVE!!!!!!!!!!!!!!


Offline Mike

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That'a great TC! Now quit worrying and get some sleep!

Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline thecommodore

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I plan to Mike.  :)

Thank you everyone for your patience, insights, and supports.  I will be praying for all of you so that can all be rid of this awful disease.

:)

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Congratulations! Enjoy your precious health.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Mpetrecz

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Yeah!  Great news!  Enjoy!

 


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