Sure will do. Ill have the appointment tonight and will keep you posted. Thanks a lot!
I just had the appointment with the specialist and he confirmed what you guys already told me. I never had the virus nor do I have it right now. The only thing it indicates is that I’m not vaccinated. So this is what im going to do now. The other doctor read the test incorrectly it seams, which is kind of crazy.
Thank you all so much for your support here.
This forum is amazing.
What labs are done to know one’s genotype?
Although I am “functionally cured”, do I still need to know my genotype?
For the past two years I’ve been on prednisone and so far I haven’t had a reactivation.
Great to hear that you are getting vaccinated, @Bernd, and glad you got clarification on your status.
Unfortunately, knowledge and awareness around hepatitis B is not as high as it should be, even in medical communities (to be fair, some of these doctors will not see many patients with hepatitis B, so it is not on their radar). This is our mission on this forum to fill the gap and support people through providing knowledge.
Hi. I just signed up on this forum. I’m not sure how to create a post on this site. I have done extensive research on HBV. I recently met someone and they disclosed to me their status (I am negative). He has it since birth or a baby. I already read everything about transmission. I spoke to my doctor (multiple doctors: PCP, gyno, hepatologist). None of them could answer my questions. So I am here to do my own research since my doctors are clueless. I had bloodwork done and I have antibodies from the vaccine (tithers were not checked do not sure if i have sufficient protection). My main question that I can’t find any research on is this: once “cleared” can HBV reactivate or is it actually gone? I’ve read that 90% of adults who get infected will clear it. My doctor said it doesn’t get cleared. I also asked a virologist/scientist and he said same. Maybe dormant but not cleared. It’s forever. Why does it say online that 90% of people will “clear” the virus? Does it actually go away? I am falling in love with this man but can’t bring myaelf to do anything physical with him because I am honestly very scared to get infected. He is on daily medication. I already know this lowers the risk even more.
Hello @Cloud9 and welcome to the forum!
I am not a doctor nor a researcher, I’m just a HBV infected person which does a lot of reading on the subject and asks questions as much as possible.
I’ll try to answer your question: those 90% of adults which will clear the virus in 6 months (or less) will suffer what’s called a functional cure, that’s what our bodies are capable of doing. Currently it’s widely accepted that there are four types of possible cures:
Partial cure: the viral load (HB-DNA) goes to undetectable levels and it stays there forever, without the need of taking one pill per day for the rest of the patient’s life. But the cccDNA is still there in the nucleus of the hepatocytes (i.e. liver cells)
Functional cure (what the adult human body does in most of the cases): the viral load goes undetectable, but also the surface antigen (HBsAg) goes to undetectable levels. This is a protein which has some negative influence on the way our immune system can work against the virus, and it’s produced in a different way compared to the replication mechanism of the virus itself (not by cccDNA but by a ‘broken’ form of it, called Integrated DNA).
Complete cure: the viral load and HBsAg go undetectable, but also the cccDNA is eliminated and so unable to produce new viral particles anymore. The only parts remaining is the Integrated DNA which would still reside in some of the infected hepatocytes.
Sterilizing cure: Here is where the viral load, the SVP like HBsAg and all the “factories” that produce them are completely removed and the patient is truly HBV free. As Thomas Tu said in a lecture, it would be as if the patient never contacted the virus in the first place.
Once the functional cure happens, either during the acute phase, or during the chronic HBV (around 0.5% - 1% of the infected world population suffers a sudden HBsAg seroconversion every year, others suffer it after many years of antiviral treatment, but both cases are very rare), or maybe with new medications in the future, if anti-HBs (or HBsAb) gets positive it means that the patient is cured in the way that the HBV will not affect their liver anymore and no medication will be required from that point on.
Now since it’s not cure number 3) nor 4), it means that some “components” of the virus are still present in the patient’s liver (or even external to it), but in a dormant state. Most of the time, it will stay like that forever, but some immunosuppressive therapies could reactive it.
I only found out about my infection this March, and it seems that my wife took the virus from me sometime between 2008 and 2023, but her body was able to get rid of it (i.e. do the functional cure) and now she has anti-HBs antibodies. The doctors said that she doesn’t and will never require any vaccination.
For persons that have the antibodies from vaccine, I read that some prefer to keep the HBsAb levels safe and do a vaccine booster every 10 years or so.
But your doctors are correct: unless the scientists are able to find a way to achieve a sterilizing cure, the other cures do no completely eliminate the HBV and there might be risks of reactivation.
Hope this helps!
That was very informative. Thank you.
Hello @Gregory ,
I’m sorry to hear about your HBV infection, I sadly know myself how tough it can be to find you have the virus. I also found out about my infection this year, at the end of March. I hoped for six whole months that it will be cleared out, but with the HB-DNA around a few thousands and normal ALTs, it was pretty clear that it’s not the acute phase and that I’ve been living with it for a longer time.
All the bad things that can happen because of HBV could have a real impact on the mind, I can confirm this. But after the shock phase, I started to document myself more and more on the subject and start to know the enemy, so to speak. It’s true that some of the reading might reveal ugly possibilities that doesn’t make it easier for the mind, but the majority of the information out there is positive and optimistic.
By reading about all the progresses the researchers are doing each year, and watches their annual conferences on YouTube, are really a breath of optimism and hope. A few years ago the cure for HepC was found, and even though the complexity of HBV is higher and the virus is much trickier to deal with, these people are pushing the barriers and I’m sure that soon enough they’ll give us at least a functional cure! In the next few years we might get for example new medication like Bepirovirsen, which has a pretty decent rate of reaching functional cure.
I’m glad to hear that you’re going to a therapist, that’s always helpful. And please stay positive and hopeful, since great people like Thomas Tu, Andrew Vaillant, John Tavis and other hundreds and thousands of scientists and researchers like them are working hard on finding a cure.
All the best!
Thanks you for the positive words. I’m very sorry you are sharing my experiences. It’s a tough reality.
I agree with you, after the initial shock and extensive and almost obsessive research about the virus ( I have been reading every article and videos available about HBV on YT etc) it gets a little better and psychological therapy does help.
I’m very grateful to scientists, doctors like @ThomasTu @john.tavis @availlant that not only work hard in the research but also find the time in their busy schedules to respond to us on this blessed hepbcommunity forum,
My 6 months of acute infection will be over at the end of November ( I’m going for lab work next week) I don’t hope in any good result since so far I haven’t been able to “Clear the virus “.
I’m exhausted and hopeless of month after month of blood work with not positive results.
What I have been finding really hard it’s the adjustment of this new life: diet, social stigma and the fear of infecting people ( I haven’t been able to embrace and kiss my orderly mother which I’m taking care of at the moment or my precious little nephews and nieces since the diagnosis.
I know I’m exaggerating, but I can’t help, I hope time will help.
I still f
I still feel when among people that I have this terrible secret I know some people may find this dramatic but this is how I feel at the moment.
I’m very grateful and thankful for this forum since it’s the only place where I find some solace. Even though I don’t post, I read religiously the latest posts.
Im very hopeful about a functional cure to be developed soon. Although
It’s very disheartening, the media always talks about ending HepC ( there is a cure already) and rarely about HepB probably because there is a vaccine available, but, that won’t help me.
I totally feel you, but stay strong, sooner than later we’ll get the cure, I’m sure of that (even if only a functional one, which after all it’s the one the body does when it can clear the virus by itself).
Now you may disagree, but if there is one positive thing about the HBV infection, I reckon it’s this one: it makes us more aware of our body and our health. We have to improve our lifestyle, diet, how much sport we do etc. So instead of killing us, there is a chance that it might make us live longer and healthier! And thankfully I’m not the only one thinking and saying this.
So let’s try to turn the tide in our favor regarding this
That is true although it’s a bittersweet consolation .
On another note I have a question:
has anybody experienced neuropathy as part of the symptoms?
I have had a numb toe and tingling fingers for about sometimes now wondering if there is anything I could do to address before I ask my doctor on the next visit.
I don’t think your numbness has anything to do with your liver.
It could be your back is out of alignment.
Or anything, I’m going by my lived experience not professional expert.
Mention your symptoms to your GP.
Hopefully you will find a solution.
The experts will be along soon and may help further.
Hi @Caraline thanks you for your response, I asked because I have red that Neuropathy can be a side effect of Hep B ( it doesn’t effect everybody) and wanted to ask if anybody’s experienced it.
Hi @ Gregory,
I hear you, and I do empathize with you. the experience of having a hepatitis B diagnosis follows more of the grief cycle. One day you feel good and the next day you feel bad. It is not a straight line so expect these bumps, but over time one adapts better.
If I may ask, why are you not able to embrace and kiss your mother or be around your nephews and nieces? Is this because you have hepatitis B? If so, you don’t have to worry about that. Hepatitis B virus is a blood borne virus that is transmitted when one comes into contact with an infected blood or other body fluids such as semen. It is not airborne or contagious, and if there is no blood or other bodily fluids present that even makes transmission impossible. Embracing someone or playing with your nephews and nieces should not be a problem. Kissing, hugging, sharing utensils or eating together or even sharing a bed with someone is not a way to get infected with hepatitis B. Remember, aside from getting infected through the birthing process/blood transfusion; for all the other ways there has to be an infected blood, a cut, wound or sore or some skin opening on the other person for a transmission to be possible.
Reading around is good, but it can also be overwhelming. It is fair to say that about 50% of what we read on the internet are not correct information and another 50% is true. Consume these information with caution, some might scare you for no good reason. Don’t overburden yourself with that, take it easy.
Do not give up because you still have a 90% chance if you got this as an adult. I understand the frustration with the monthly blood work. Remain hopeful and don’t throw in the towel yet. Remain positive. Best, Bansah1
The way to check if this is from a previous infection is having a test for anti-HBc antibodies. If this is positive, then it is a result from a cleared acute infection.
It is true that some HBV DNA can remain in the liver after clearance of the infection (defined by a HBsAg-negative result). However, the risk that it can reactivate is extremely low in most circumstances. It is only something that you need to worry about if you are undergoing very harsh immunosuppression (e.g., getting an organ transplant). In normal instances, there is little risk of transmission.
Hope this helps,
Hello @Bansah1 I appreciate your encouragement.
About embracing my loved ones, I know that unless there is direct contact with blood or body fluids its hard to get infected with the virus, ( and I do hug my mother) but I can’t help thinking deep in my mind " I’m infectious",
especially, while I’ m cooking or doing anything that may create a cut or a scrap on my skin, its a psychological state I can’t get rid of, hopefully time will help.
Reading around I agree is overwhelming, but I must say it’s the only font of information, doctors are very short and dismissive like " take the antivirals and ill see you in six months for check-ups, very little empathy or warmth, I understand they are busy and see people every day with even worst diagnosis but I’m a human being after all… thanks god for this forum and people like you…
Hi @ Gregory,
I might not understand what you are going through, but I see and hear you. It’s something some patients go through. I didn’t experience that probably because I don’t have my family living with me. Here is something you could maybe try, just my silly thoughts. Since you feel that way even in the kitchen maybe try using disposable gloves at least you get a barrier between your skin and any sharp object when you are doing work in the kitchen or use those handy gloves when working with sharp tools. I also believe that as humans the more we think many times about something the likelihood that we make a mistake goes up.
Try this" tell yourself I am infected with hepatitis B, but I am not contagious " such positive affirmation or thoughts could help calm your system down. By repeating it to yourself the brain will pick it up and it will work on your body and help calm your thoughts.
I bet you are frustrated about all this, but don’t over stress yourself. Remain positive and take it one day at a time.
I also agree with you about reading or researching online. It has improved a little at least since 2014 when I was diagnosed. There wasn’t much materials or information and I didn’t know who to call or email. I survived by reading about the disease. As long as we are able to decipher between what is correct and incorrect information, I think we should be fine. Sometimes people struggle to make this distinction and they end up overworking themselves emotionally and psychologically; and later realize that the information they got was not correct. I try to encourage people to read about the disease but to do so slowly to avoid being overwhelmed or stressed out even more.
I hope you get some positive news this time round. I am cheering for you. Keep us posted. Best, Bansah1.
Hi, I’m Danny from Malaysia and glad joining the community. I got effected positive HBV chronic since 2017 after I done my blood screening. Currently I m doing blood test, liver ultrasound test and rest of test twice a year recommended by my doctor. Pray one day we will have cure drug for HBV.
I was the same…I never hugged or kissed anyone, fearing I would somehow pass this dreadful disease onto them. Which I now realise is ridiculous but that’s the truth.
I also wouldn’t work in certain jobs, just in case. Like, cooking for people, cut myself blood somehow gets into their blood. Or a child care centre. I would have been great at that job.
Oh the mind can be our worst enemy.
Thankfully, years later and much research , I’m not like that now. But it is still there…the fear of passing it on.
So, you are not alone.
Ps the chances of passing it on are very low. Too low to worry about with the knowledge we have. Xo