Author Topic: Just tested positive: In complete shock and disbelief. How? (Read 19753 times)

David0045 · « **on:** February 21, 2020, 02:14:16 pm »

Hi everyone,

I am very new to this forum and since two days ago, I learned that I tested positive for HCV after an antibody test. I already deal with anxiety so learning this news has really put me over the edge in terms of my anxiety levels; I have been shaking, dealing with insomnia, and have been unable to eat since hearing this news. I am devastated to say the least. Needless to say, the phone call was quite a daunting experience. I never would have thought I would be Hep C positive. All my other test results for other STDs/HIV came back negative.

A little history about me, I am a 24 year old straight male student with zero history of drug use with no tattoos and no blood transfusions. I have had two sexual partners in my life of whom to my knowledge are not Hep C positive. I have read that it's almost impossible (but not entirely) to contract Hep C from sexual intercourse. I've lived with my parents and grandparents in the same household for the entirety of my life...none of them are Hep C positive, as far as I know.

What's really confusing is, I donated blood to the blood bank in June of 2018 and my blood was cleared for donation. No Hep C positive result was shown to me. If I can recall, the standard procedure for blood banks (if anything in the blood was detected) would be to notify the donor via mail. I never received any mail of that sort; in fact they still call me several times a year asking me for blood donations, so I'm only assuming that according to their database, I am Hep C negative. My conclusion is that I probably contracted it some time between June 2018 and Jan 2020.

I am just here to look for emotional support and some advice as to my course of action here. The clinic I got tested at that called me about my positive result ordered a secondary test to confirm the results. What are the chances that the initial result was really a false positive? I put myself in the category of extremely low risk considering my past history. Are false positives a common occurrence?

Thank you very much! This forum seems to be incredibly informative and helpful!

Lynn K · « **Reply #1 on:** February 21, 2020, 03:43:38 pm »

Since the blood bank has not notified you I would consider the possibility of a false positive on this test. Was this one of those kits or did you go to a lab? Why did your doctor order this test?

My suggestion would be to have your doctor order a new HCV antibody test and if still positive have the HCV RNA by PCR test to determine if you are CURRENTLY infected. If you have a good lab test with a positive antibody test and have an HCV RNA test which looks for the presence of the actual virus in your blood and that test is not detected you DO NOT have hepatitis C.

It is possible you had a false positive or that you are not currently infected with the virus and only carry antibodies.

Speak to your doctor about further testing.

David0045 · « **Reply #2 on:** February 21, 2020, 03:55:26 pm »

Hi Lynn K,

Thank you for the detailed and timely response, I greatly appreciate it. My last blood donation from the blood bank was in June of 2018 and they found no traces of HCV antibodies in my blood and my blood was deemed viable for donation. I have not donated blood in a year and a half.

I’ve never been HIV/STD tested so I thought I’d just walk myself into a clinic two days ago to get tested. The nurse at the clinic asked if I wanted to be tested for Hep C as well and I said “sure why not,” confident that nothing would come up. My other test results all came back negative for other STIs and HIV.

Thank you,
David

Lynn K · « **Reply #3 on:** February 21, 2020, 08:43:34 pm »

Ok sounds like should have been a good lab source. So next would be to get the HCV RNA by PCR to determine whether or not you are currently infected and will need treatment to eradicate the virus.

I’m still thinking it could be a false positive. What does your lab report say exactly? Did it say a test result like a number a signal to cut off ratio (s/co) a result more than 1.0 is considered positive

David0045 · « **Reply #4 on:** February 21, 2020, 08:47:49 pm »

Unfortunately I do not have the lab results what so ever with me in a digital or physical form. All the nurse told me over the phone was that I was negative for all other STIs and HIV I tested for, but was positive for Hep C. I’m still wondering how this possibly could have happened in the last year and a half since my last blood result. I’ve been told the test that blood banks run are hyper sensitive to Hep C, so if any antibodies were to be detected, it would’ve been reported back in the summer of 2018.

Lynn K · « **Reply #5 on:** February 21, 2020, 09:00:10 pm »

Yeah I’ve heard the same about blood banks.

Here is some info about hep c testing often when a person has a positive result their sample will automatically be sent in for additional testing for the HCV RNA to check for the presence of the virus.

https://www.aphl.org/aboutAPHL/publications/Documents/ID-2019Jan-HCV-Test-Result-Interpretation-Guide.pdf

At this point if they didn’t automatically send in your sample for the HCV RNA test you will need to have that test done to determine if you are currently infected. Get with your personal physician to discuss what is going on. Your doctor may consider running another hep c antibody test.

David0045 · « **Reply #6 on:** February 21, 2020, 09:22:34 pm »

Thank you for all the info Lynn!

Midnightbanana · « **Reply #7 on:** February 21, 2020, 10:51:34 pm »

The first Hep C test usually is for antibodies. The real determining test is the RNA Quant test. You may have been exposed somehow and cleared the virus.

Having said that, if I were you, make sure they do an RNA test. In my case, they used the same sample and this might be what will happen in your case too. If they find that you have a verifiable quantity of the virus in your blood, then they will determine the genome through a 2nd test and then recommend treatment.

The treatments available now are in the upper 90% effective and some genomes are 99% cleared by meds that are available now.

I thought by being careful over the years that Hep C wasn't something to worry about. To my extreme dismay, it was found in my test. I then found out my viral load was 3,521,606. I was floored to say the least. A further test determined I had genome 1b. Like you, everything seemed turned upside down for me. I couldn't sleep and was obsessed over the news.

BUT...I'm now on generic Epclusa and it is paid for by a grant. After 4 weeks, my count was 20. Quite a change from the 3 million plus and very encouraging for me. I'm now in week 7 and hopeful that there will be a successful outcome.

Try not to be overwhelmed and I know that it is easy to say. Stay positive and be assured that even if you are carrying the active virus, you are almost certain to be cured.

Good Luck!

David0045 · « **Reply #8 on:** February 21, 2020, 11:01:10 pm »

Thank you Midnightbanana for the information and support. World turned upside down sounds about right as to how I am feeling right now. I am very glad your treatment is working and I hope when you're finished your course of medication that the virus will be undetectable. I am crossing my fingers that it really is a false positive test. I just cannot wrap my head around how this could have happened to me; I'm usually a very scrupulous and safe person when it comes to sex, especially drugs, which I've never used in the first place.

Lynn K · « **Reply #9 on:** February 21, 2020, 11:27:16 pm »

Hep c isn’t really considered to be an std however for those who have multiple partners or engage in rough sexual practices like BSDM there is an increased risk as well as in the presence of co-infection with HIV.

There is a small number of people who have no idea how they contracted hep c. But as you have no risk factors, and were fine when you donated blood a couple of years back, I’m still suspicious of the validity of that hep c antibody test

Best of luck

David0045 · « **Reply #10 on:** February 21, 2020, 11:47:49 pm »

I’m really hoping that it is a case of a false positive. However I won’t know until I get an RNA test which I will be doing tomorrow and won’t know the results until next week possibly.

Lynn K · « **Reply #11 on:** February 21, 2020, 11:57:46 pm »

Good luck, fingers crossed for you

Midnightbanana · « **Reply #12 on:** February 22, 2020, 09:12:30 am »

Yes, David, absolutely good luck! Count me with you as not having a clue how I got the virus.

Lucky they found it actually because my liver had developed fibrosis (F2) from the disease. I'm much older than you and it is probable I carried the virus for a much longer time. While I don't know this as a fact, I would guess you are too young to have developed any liver damage yet. Nevertheless, if you do have a count with your 2nd test, please don't balk on treatment. I've found the side effects of Epclusa to be generally minimal, especially after about a week.

Slightly off topic - I'm new here and after reading Lynn K.'s battles with treatment and eventual cure, I am awed by your persistence to working towards a cure. Those early treatment fails must have been really hard. I'm very happy for you that you are finally free!

Lynn K · « **Reply #13 on:** February 22, 2020, 11:35:23 pm »

Quote from: Midnightbanana on February 22, 2020, 09:12:30 am

Slightly off topic - I'm new here and after reading Lynn K.'s battles with treatment and eventual cure, I am awed by your persistence to working towards a cure. Those early treatment fails must have been really hard. I'm very happy for you that you are finally free!

Actually after the initial shock of diagnosis wore off it wasn’t so bad. The old treatments of self administered injections were really tough and while failing treatment three times was disappointing At that time I have little to no liver damage. But after being infected for thirty years when I had my 4th liver biopsy I learned I had liver cirrhosis with no new treatments on the horizon.

After 7 years of living with liver cirrhosis the new generation DAA’s began to be approved. I took one of the first of the new treatments and for the first time in 37 years my liver enzymes were in normal range and my viral load was undetected. Unfortunately, 12 weeks after finishing the new meds I was found to have relapsed with my viral load higher than my pre treatment levels. That was the treatment failure that was the hardest to bear. Fortunately the next month Harvoni was approved and because of my prior history we went with 24 weeks of Harvoni instead of the normal 12 and added ribavirin one of the old meds to my treatment to hopefully improve my chances of being cured. I beyond thankful that last treatment finally worked and I am now 5 years post treatment and remain cured of hepatitis c although I’ve now been living with liver cirrhosis for 12 years.

Best of luck

David0045 · « **Reply #14 on:** March 03, 2020, 04:29:45 pm »

After waiting anxiously for a week and a half...my results finally came back in. The nurse failed to mention to me a week and a half ago after telling me about my initial positive antibody test that the test was actually equivocal...meaning it was neither positive or negative. Apparently the antibody test was done twice: the first result yielded a positive result while the second result yielded a negative result, hence they cancelled each other out and was 'equivocal.' According to the nurse over the phone, the antibody test is done twice in order to confirm the initial result. Because the second confirmatory test came back negative and was unable to confirm the initial positive result, the test is equivocal. RNA test was ordered last week and today I was told the results are equivocal again...I'm extremely confused and would hate to go for another blood test...so far...two equivocal results for antibody and RNA antigen.

*After speaking to the doctor, he ordered me another HCV RNA test in a month's time. His speculation so far is that if the test comes back indeterminate or equivocal again, it means I do not have HCV...but going from the current tests and history of those who test equivocal, he's quite confident that it is truly just a false positive and that I do not have HCV.

Summary:

Feb 20th Hep C Antibody: Positive
Feb 20th Hep C Antibody Second confirmatory test: Negative

(the two results combined above are classified as an equivocal)

Mar 3rd Hep C RNA: Indeterminate/Equivocal

Apr 3rd Hep C RNA Retest: N/A

Lynn K · « **Reply #15 on:** March 03, 2020, 05:54:25 pm »

Yeah absolutely zero reason to have repeated antibody tests the only test you should have is the HCV RNA by PCR test if that is no detected after a period of time you don’t have hep c

Best of luck

David0045 · « **Reply #16 on:** March 03, 2020, 06:08:45 pm »

Thanks Lynn, totally agree and the doctor seems to agree as well. The initial antibody test was done twice; I was not aware of this. The lab according to the nurse ran it through two rounds of tests initially and one came up positive and another came up negative. No reason to repeat the antibody test as it seems less reliable than the RNA test. I’m just frustrated the nurse never mentioned that to me a couple weeks back. She only mentioned the reactive antibody test and not the secondary confirmatory antibody non-reactive test.

Frustrating that I’ll have to wait another month and a half to finally see what is going on. This indeterminate RNA result isn’t helping much at all; I thought they were supposed to be nearly 100% accurate.

Lynn K · « **Reply #17 on:** March 04, 2020, 12:24:08 am »

In general the RNA test is very reliable but it’s possible if someone is recently infected and the body is fighting off the infection I guess it could cause different results. But certainly if one waits several months and no viral load develops one would expect that person was one of the fortunate 25% who beat the virus on their own without treatment. You may be seeing ringside seats for the battle. But even if it does end up that you are infected the new treatments are very effective in curing hep c.

Things are much better today than what I was facing back in 1990 when I learned I was infected with hep c. Back then the only treatments were less than 25% possibility of being cured. Had to live knowing I had hep c for 25 years before I finally was cured on my 5th treatment.

Good luck you will have some answers soon

David0045 · « **Reply #18 on:** March 30, 2020, 08:14:46 pm »

Hi everyone,

So here’s an update after 6 weeks of confusion and 3 tests. The first initial antibody test that was run showed an equivocal result which meant the initial results were positive, but another antibody test (which from what the nurse told me is sort of a ‘control’ mechanism to affirm the initial result) resulted in negative response.

So essentially they use two separate antibody tests. The two tests are supposed to show the same result when there is a definitive infection or definitive non-infection. My first antibody test came back reactive, and then non-reactive for the control test, therefore, not confirming the reactive result and causing the test to be “indeterminate” or “equivocal”

The second test that was run a week later was another double antibody test along with an RNA test because the doctor thought maybe if I gave it some time, my body would produce more antibodies and it could be detected easier; however not the case. The results were the exact same as the first test. It showed a reactive and a non-reactive result in the antibody tests. From what the doctor is telling me, it’s perhaps that a certain antibody in my blood is reacting to the first test which may have a lower signal to cut off ratio and showing that I have Hep C antibodies while the control antibody test to confirm the initial results is saying I don’t have Hep C antibodies because it’s NOT reacting to it with a less sensitive signal to cut off ratio. The unfortunate part is, the lab is unable to run the RNA test because of a low serology signal; meaning they are not even running the RNA test because my antibody levels are so low that they didn’t want to use up resources in testing for RNA due to the unfortunate circumstances of Covid-19, the lab has been overworked.

The third test was done a month later... exact same results. A reactive and non-reactive result for the antibody and a low serology signal (meaning low antiibody signal in the serum), which is protocol for “no need to run the RNA test.”

The doctor has given me some reassurance that because nothing has changed in my antibody test signals and that the indeterminate or equivocal results have been the same, that it’s most likely a false positive and that my blood is reacting to that one antibody test while the confirmatory antibody test is showing non-reactive.

So in conclusion.... he wants a 3 month follow up of another antibody test and hopes that in that time, my body may have cleared any antibodies that are giving off a reactive signal for that lone antibody test. However, if the results are the same, they may run another test that specifically looks for the virus or viral load.. He reassured me that there is nothing to be urgent about and that it’s most likely a false positive as they would expect some change or a higher serology signal in my antibody tests if it was an acute infection.

Lynn K · « **Reply #19 on:** March 30, 2020, 08:46:46 pm »

Well whatever the outcome in this situation, hepatitis c is no a medical emergency. Only about 20% of people infected for 20 years will develop liver damage. Hep c is a very slowly acting illness needing decades to cause serious liver damage if it ever does. Also hep c is now very treatable today. The treatments approved beginning in 2014 are much better tolerated and much more effective than what was previously available. Treatment can be as simple as 1 pill a day for possibly as few as 8 weeks and cure rates are around 98% or better. So even if you do end up learning you are infected with hep c you can be treated and cured.

I’m sure this is very frustrating but hang in there. If I were to bet I’m reasonable confident you do not have hep c.

Best of luck

David0045 · « **Reply #20 on:** March 31, 2020, 02:30:25 am »

Hi Lynn,

Thank you for the encouraging words. It’s been quite a stressful couple of months in addition to this covid-19 crisis that is really exasperating my anxiety and stress.

I hope things are going good for you.

Lynn K · « **Reply #21 on:** March 31, 2020, 02:55:42 am »

Thanks for asking we’re doing fine at home on staycation lol. Governor issued a stay at home order last week.

David0045 · « **Reply #22 on:** April 07, 2020, 07:48:50 am »

After a 2 months headache and 3 antibody tests and having to draw blood 3 separate times(1 of them supposedly for an RNA test), I finally received my RNA results which the doctor originally told me the lab didn’t run... and that I would have to do another antibody test in 3 months... well, it turns out the lab did run an RNA test, but it was just very late due to the overwhelming testing carried out with covid-19.

I am Negative for Hep C according to the RNA results!

I feel absolutely relieved considering the current global crisis has added some extra stress in my life.

However, the doctor still wants to re-run an antibody test in 3 months to confirm that whatever antibody in my system that is cross reacting with that Hep C antibody test will pass or go away with time.

Unfortunately I do not think I am able to donate blood anymore due to the fact that I come up positive on antibody tests and will probably have that on my medical records. which is a huge shame. Odd thing is, the doctor believes it might just be that specific antibody test at the CDC lab that comes up positive for me considering just last year I’ve donated blood and the blood bank never mentioned to me anything about testing positive for Hep C Antibodies. Blood donation places are usually extremely stringent and run very sensitive tests before officially accepting your blood.

The doctor thinks I’ve never had Hep C at all and something in my system is just triggering the antibody test to register as weakly positive or having a very low signal to cut-off ratio. I was told my serology levels were so weak that it definitely looks like a false positive (hence why the lab was hesitant to even run an RNA test considering it takes quite a bit more resources).

Anyways, I hope everyone is doing great and healthy. Be safe out there! Thanks for everyone’s help on this forum, I greatly appreciate the advice and support!

Lynn K · « **Reply #23 on:** April 12, 2020, 08:05:21 pm »

Hard to say what is causing the positive hep c antibody result. Personally I’m not optimistic that result will ever change. For us who were infected with hep c but either cleared on our own or cured by treatment although we test negative for the virus the expectation is we will likely test positive for hep c antibodies for the rest of our lives.

Congrats on your negative HCV RNA test results

Stay safe in this difficult time

Forums Index

Welcome

Author Topic: Just tested positive: In complete shock and disbelief. How? (Read 19753 times)