POSITIVE OR NEGATIVE (Hep C)? RNA / Antibody

[oona]

Hello, I'm a 29 year old female who tested positive for Hep C antibodies in 1998 (when I was 17 years old).

In 2008 I was referred to a Liver Specialist / Internists who ran an HCV RNA test which came back as saying: Hep C-Quantitative RNA Not detected.

The Liver Specialist was very strong in stating that I did NOT have Hep C! Imagine my surprise after 10 years of living with the worry.

Now things have started all over again, I recently tested positive on the Hep C antibody test this October 2010, with a new health care practitioner and am going through the whole process of testing HCV RNA all over again.
( actually I have been very ill w/ positive ANA test w/ two patterns 1:160, really high heart rate 160 bpm + other problems that probably don't concern this question)

Does anyone here have experience testing negative on HCV RNA Quantitative and then it coming back a couple of years later? What's happening here with me? Do I have Hep C or not?

I have never had treatment for the virus.

How accurate are these tests?

Thank you so much for your thoughts/ advice / ideas / experience!

FYI: there was also a test done in 2006, before the "Not detected" in 2008 that says Viral RNA is <600 I.U. /ml.

[serchin26]

ANA patterns can indicate Autoimmune hepatitis. Mean your body created antibodies to fight the virus and now your immune system is confused and instead of attacking the hep C cells on your liver it is attacking the liver itself.  I have read up on it considering I had hep C negative RNA but positive speckled pattern of 1:80 ANA.  You should follow up with your doctor because if you have an autoimmune disease due to this it can get back unless treated

[serchin26]

The following is an excerpt from the HCV E-book.



HEPATITIS C AND MILK THISTLE/ SILYMARIN


Milk thistle (Silymarin) is probably the most widely used and popular "liver herb." Milk Thistle is a must have for anyone with any form of hepatitis, including HCV, or any liver disease. Milk Thistle contains some of the most potent liver protecting substances known.

AKA: St. Mary's Thistle
Latin Name: Silybum marianum, Carduus marianus; Compositae

Herbal Properties: antioxidant, hepatoprotective,
bitter tonic, demulcent, antidepressant

[serchin26]

btw I read statistics that most people that fight the virus off on their own are young girls so your immune system fought it off of you.  Don't keep walking around thinking you are infected with this if the RNA test came back not dected.  Your immune system is amazing and it fought this virus but do follow up once a year to get tested to make sure you remain in that status which most likely you will.  Also take good care of yourself to keep from getting hepatitis....inflammation of the liver.  You can get hepatitis just from drinking too much (not hepatitis C but hepatitis, medical term meaning inflammation of the liver)  also excersize and eat healthy you do not need a a fatty liver to duplicate your problems and higher the chances.  You got a second chance is how I see it.  Also I have read about milk thistle being a good supplement for your liver but do ask your doctor before taking any supplement right now, but it is something you could bring up.

[serchin26]

Oona,

I tested positive for Hep C antibodies and took two RNA tests months apart that came back not detected.  Each time the doctor scared me into thinking I had it again just bc I had the antibodies.  The antibodies are created by our body to fight the virus, which your body has seen, but successfully fought off.  You do not have the virus but each doctor will act like the presence of antibodies means you have the virus.  NO.  It means you HAD the virus.  The thing I really wanted to touch up on is the ANA thing.  I have been consistently testing non detectable through RNA quantitative, qualitative, and genotype test.  They couldn't tell what genotype it was because the virus was nondetectable (not there).  The real thing I wanted to bring up is the fact that even though the virus is gone my body produced antinuclear antibodies that adversely are attacking my cells.  I have an ANA speckled pattern of 1:80.  I know this is a low positive but I don't have any symptoms and I do not understand where this came from so I'm thinking that this ANA is related to the Hep C thing.  Lets keep in touch and let me know what you find through your experience.  I am going to see a specialist on my own for this answer and if I find something relative I will let you know.

[Nursemita]

In 1982 I tested positive Hep C and in 2000 tested for Hep C antibody. Now in 2014 I had 4 tests of Hep C antibody and the qualitative whatever that means and now I am Non-reactive.  Confuses me too! How could that be?? I was tested 4 times last week.

[oona]

Thanks Bill, you're just on call to help people, aren't you. So nice of you. I've actually been worried that it might be a spread from my colon. Of course I go to the worst place possible. I have, been having digestive problems for over four years now (among many other issues), but I'm sure there would have been other indications if that was the case. I certainly hope so.

I don't have cirrhosis, that would have been obvious at this point (e.g. ultrasound, CT scan, and normal ALT / AST/ GGT), but bilirubin is high, has been for years. I'm young and the chances are slim that my big fears here are true, I've got some things on my side, but it is hard not to worry when you don't know what it is that you're facing and the doctors aren't too sure either. Thanks for writing me back :)  

[Bill1954]

Hi Oona—

Primary liver cancer (hepatocellular carcinoma) outside of cirrhosis is rare; HCV infection itself doesn’t increase this risk; only when accompanied by advanced cirrhosis. It generally takes decades for HCV to progress to cirrhosis.

--Bill

[oona]

I meant to say that they are recommending an MRI, not a CT. I just had one of those :)

[oona]

I'm posting more info, because I got some today. I guess tomorrow I might know a little bit more, but they did call me about the CT (rather quickly, too). From what I was able to understand, the radiologist is recommending a CT scan because of possible fatty infiltration of the liver. This seems strange to me, and there was no mention of hemangioma this time, even though this is what they were testing for. I am very small (104 lbs) and hardly eat any fatty foods at all. I also had an ultrasound in November 2009 which didn't show anything, so I'm starting to get a bit scared about all of this.  I'm not sure where to post for answers now, and am worried that this could be something more serious (like cancer). I guess if they thought it was remotely that, they would probably be saying something about it in one of the two imaging tests that I've had thus far. I have read that, sometimes, exposure to Hep C can make it more likely to develop certain forms of liver cancer. Do you know if this is true? Has anyone here heard of fatty infiltration of the liver or know if it is fairly distinguishable (On CT w/ contrast or US) from other more serious illnesses? Thanks guys.

[amanda60]

it's very good that you see things positively , i am sure that she will be better and better

[jwalia]

Maam,

As we had gone through a lot of expenses due to her BMT we are not in a position to start the therapy right now.  Secondly her LFT counts are getting lower.  We had started her on iron chelation with desferal and she is also having phlebotomy every month.  You know it is a great relief in a way that we don't have to go for  blood transfusions every fortnight.  She is doing very fine, started her school from November 5 and doing exceptionally well in academics.  

LOL

walia

[amanda60]

i red that in few websites , and also my daughter 28 year old has cleared it on her own , i think the cause of liver abnormality of your daughter is iron overload on her liver and not hcv ,
did you start medication yet or will wait?
how is your daughter doing after the BMT?
please keep us updated, and i wish her all the best

[jwalia]

My case is also somewhat same.  You have a happy ending(regarding HCV), but i don't know what the future have for us.My daugher is a 15 year old exthalassemic who underwent BMT in November 2009.  She was found to be HCV positive prior to BMT(bone marrow transplant) and she underwent liver biopsy and HCV RNA Qualitative test.  The result of biopsy was Grade IV iron overload, mild portal and focal periportal fibrosis, and focal mild to moderate portal inflammation.(HCV positive).  The result of RNA qualitative was Not detected.During BMT she had moderate veno occlusive disease and she recovered. She was using Tab cyclosporin as immunosuppresant.  She had some anomalies in her SGOT and SGPT.  Last HCV RNA quantitative was done on March 30 2010 and the result was 12100000IU/ML
HCV quantitative done on 30.9.10 had a value of 1420000 IU/ML.  There was a decrease of 88% of virus load from the previously done report.  There is also marked decrease in SGOT and SGPT levels.  My question is if there is an decrease of this proportion without taking any extra medication, can her body recovers the remaining 12 %?  
I will love to have a happy ending.  yes these tests and physicians are mind boggling lot, you don't know what to do or with whom to share your worries, but i am quite thankful to Trinity,Bill 1954, and Specially Dr. Robert Schiano, MD for their help and suggestions which gave us hope to carry on.  I was so devastated but i know there are people who will be there to help me.  

TO Amanda 60:"young age females have a huge chance of clearing the virus on their own which has happened with you and me."  do you have some scientific data supporting it or some personal experience?  Love to share that.

LOL

walia

LOL

walia

[Bill1954]

Well, how cool is that :o)! It’s nice to know, especially if it turns out that lupus is an issue; I think it might be harder to manage both of them concurrently. Lupus often requires prednisone to reduce inflammation which that can encourage HCV replication.

Have you been referred to a rheumatologist yet?

Good luck with the ct scan; hopefully the hemangioma can be left as is, sometimes they don’t require intervention. Thanks for checking back in, and if you get more info, be sure to post, okay?

Take care,

Bill

[oona]

Hello everyone,

As has been suggested, I found out definitively yesterday that I do NOT have Hepatitis C. There was no viral load detected. This closes the door on a saga that has persisted for over twelve years of my life. Although I am somewhat resentful toward the multiple doctors that mismanaged my diagnosis, I am thankful for what has been an educational / life changing / eye opening experience. I'm also pushing for everyone here that has or is close to someone who is infected with Hep C.  

My journey to get a proper diagnosis continues. Things are now pointing toward an autoimmune disease (possibly Lupus). I have an abdominal CT scan tomorrow to make sure that this liver hemangioma is just that, so may still be lurking around liver forums in the future.

Best to all and thanks for the input, I really appreciate it!

[oona]

Thank you everyone for all of your responses. I will send an update when I get my results (probably not for a few weeks). I'm more confident now that they will come back negative, but I'd like to post a response with evidence in case someone else is looking for information in the future.

Hope everyone is doing well! I'm off to bed before bloodwork in the morning.

[SusieS2010]

Your question about <600 IU's vs. undetected on another test, can be explained like this. Various tests have different lower limits of undetected. For example if you have a test that tests down to 600 IU's, and you come up undetected or less than <600, there is always a very very very small chance that if they were able to test down to <25, you might show a viral load. But, please don't worry about that. As Bill told you, 600 virons is very low and if you truly had chronic hep C you likely would have a much higher viral load. I agree with Amanda, put this behind you. You are fine.

[SusieS2010]

The latest studies (especially a retrospective one looking at 26 studies in the USA), found as low as 55% becoming chronic to as high as 85%. Doctors from NIH (Dr Ghany/Dr Seef) pass on our educastion program and that is what they have asked me to use. And I do use their stats when we present to clinicians. But you can see I say 60-80% because patients are so used to hearing 75-75% that someone always says something. Bottom line is it is 0% or 100% for each patient, right?

Have a great weekend.

[amanda60]

i am sorry , it's my daughter who are SVR now just like you

[amanda60]

i had the same experience you are having now , you had two PCR tests which were undetectable , you absolutely don't have the virus but you will always test positive for  HCV antibodies which is not harmful at all , your immune system has created it , young age females have a huge chance of clearing the virus on their own which has happened with you and me , close this page forever and go on with your life

[oona]

Thank you so much for your informative response, Bill! I am still waiting for a referral to a rheumatologist, which will hopefully happen soon (I've been pushing for it)!

As far as the new testing goes, I will send an update to this list, just so the outcome is tracked. I'm not expecting the results to all of a sudden come up positive this time (I have read before that it is unlikely), but the world is a mysterious place sometimes (so is the body), you know.

I'm also interested in what IS happening with me, if not the Hep C, something else. Once I am able to get a diagnosis (I feel this may happen soon), it might be interesting to pursue some research on the topic of Hep C / autoimmune trigger.

I've read that people with autoimmune diseases are more prone to hemangiomas (in some newer Lupus studies). Interestingly, I had one appear during a "flare" this year and it just happens to be on my liver. Make me question the exposure in 1998...etc

[oona]

Thank you all so much for your comments, I really appreciate it! I feel like I've been going nuts with this question swirling around for 12 years!

Bill1954, I have a question:

The test collected 2006/10/26 and reported 2007/04/05 says under "interpreted":
Viral RNA is <600 I.U. /ml.

The 2008 test type: HepC-Quantitive RNA resulted as: Not Detected.

a) Does that mean that I did have it detectable in 2006?

b)  Does anyone know that if once it's gone it stays gone for good? i.e. what is the likely hood of my testing positive on the HCV RNA / Genotype testing that I will do tomorrow after having a "Not Detected" result in 2008?

c) Finally, does anyone know (this part probably sounds tricky and a little crazy) of early exposure to Hep C causing an autoimmune disorder?

I'm still a little bit confused.  

[Trinity4]

"The most probable scenario is that you were exposed to hepatitis C at one time and your body fought it off and you did not become chronic. That happens about 60-70% of the time."

I believe that is incorrect.  About 75 to 80 percent of those exposed to hepc will become chronic.  Percentages vary according to statistics but the average is 20 precent will fight the virus off.

Trinity