Hello everyone, so happy to have found you.
My name is Scott, and I’m from the USA. In 2013 I was dating online and was not as careful as I should have been with a girl I went out with, taking her at her word that she did not have any STIs. Shortly after we were intimate, we decided it wasn’t going to work out and I started dating my now wife.
A few months into our relationship, I woke up one night covered in hives and went to the ER where they administered steroids and Benadryl. I thought I had acquired a freaky allergic reaction from something and after it passed, I thought nothing more of it.
A month after that, I had a routine physical exam with blood work where my doctor informed me my AST and ALT were both near 1000. I hadn’t experienced many symptoms other than fatigue, which I attributed to work stress. Followup tests revealed I had acquired hepatitis B and did not have immunity. I was told that I would more than likely clear the infection without issue as I was otherwise healthy and young (31 years old at the time).
6 months later, I received word that I had developed surface antibodies and the surface antigen was no longer detected and that according to the doctor, I was cured. My acute infection was relatively uneventful as fatigue was the only symptom I noticed from time to time. My wife was vaccinated, so she never caught it from me, and thankfully, my now 2-year-old son was also spared.
A year after my acute infection cleared, I had a bout of the flu and received a chest X-ray to check for pneumonia, and they found potential plural effusion and sent me for a CT scan. The CT did not find any problem with my lungs, but did find 2 subcentimeter lesions on my liver which they said were probably benign hemangiomas with no followup needed.
3 years later, after an injury to my back, I had an MRI of my spine, which again picked up these liver lesions. This time, they were twice as large (just under 2cm) and accompanied by two more scattered tiny (suspected) cysts.
My paternal grandfather and great grandfather both passed from HCC, so it was recommended I keep an eye on my liver, and I’ve been monitoring these lesions annually ever since. For 3 years there were only very minor changes to them, but this past year, one of the “cysts” grew from about 2mm to almost 2cm. Given this change, my family history, and the fact my father now has stage 4 liver cancer as well, continuing the family trend and making him the third consecutive generation to acquire HCC, I was referred to a hepatologist to review my recent MRI.
The doctor tested me for everything from tumor markers to liver function (all normal), and given my history with Hep B, he tested for HBVsAG, HBVsAB, and HBVcAB as well as HBV DNA. The sAG was not detected and I was reactive for the sAB (maintaining my functional immunity), but I was also reactive for cAB and they found <10 IU/mL of HBV DNA in my blood. I soon learned through my own searches (as the doc wasn’t getting back to me) that this is called occult hepatitis B (OBI), and that the virus was still hiding in my hepatocytes and replicating at low levels. I had not cleared it completely as I was told almost 9 years ago.
When I was finally in touch with a nurse, she confirmed the OBI diagnosis and told me just to keep following up annually and not worry as my risk for HCC or liver disease from this is very low. Yet, that statement seems to be in stark contrast to what I’m finding online in the very limited information on OBI. More recent findings appear to show a huge correlation between OBI and HCC in both the presence of and absence of cirrhosis and even with normal liver counts and low serum DNA like I have. I also see that it holds risk of reactivation.
I have been struggling to find conclusive information on OBI and what it means for most people who have it, because it seems to have a very low detection rate. I’ve been looking for a new doctor who is better informed about OBI and will actually talk to me about my condition, because I feel incredibly isolated and alone being told to just “wait it out and see if things get worse,” and having no one who seems to have info on what I’m going through. For context, my dad had 2 lesions on his liver in 2020, and was told to wait and follow up 6 months later, during which point they grew from just under 2cm to over 5cm and were non-resectable by the time his followup came around. 2 years later, he is stage 4 and it is now in his lymph nodes. So you can imagine my apprehensiveness to just wait and monitor for more growth. My dad, however, drank nearly every day of his adult life whereas I have never had a full alcoholic drink, nor been drunk in my life. I don’t smoke and I otherwise take care of myself. But he also was not exposed to HBV and I still am every day.
So, I’m just hoping to meet people who share my concerns and hoping I can find someone who actually knows something about OBI and what I should be expecting, how I should conduct my day-to-day, if I should be on some kind of treatment, etc. I’m also happy to lend a supportive ear to anyone who needs to vent or share their concerns, fears, hopes, information on this little DNA hijacker that likes to hang out in our livers, or just be here for anyone who wants to talk about anything (even non-hep B related) without worrying about any kind of stigma or judgment.
Here’s hoping they will be able to find a sterilizing cure sooner than later. Hope you are all well!
