INTRODUCTION THREAD: People affected by Hep B

Introduction/Orientation
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Hi @hopefulone,

Welcome to the community and thank you for sharing your story. That sounds like a really tough way of finding out you have Hep B; you couldn’t even enjoy having your second COVID vaccine. It’s great that you have booked a meeting with your health provider, I get that it is pretty hard and confronting to do alone. I hope you will be able to find the support you need from others around you.

I’ll try to answer your queries as best as I can:

  • What theories are there for getting the virus if I do not fit the risk factors? I am busting my brains theorizing what could have been such as an accident I don’t remember, allowing my barber to use razors on my skin against my better judgment, allowing my barber to use clippers on my scalp that already has problems with skin cracking and crusting over, premarital sexual relations (more than 30 years ago?!), or the 1-2 times I used my friend’s shaving equipment (I recently did a search for him and discovered he died at 69 so now I am really freaking our even more!).
  • Is there a way to know how long I have been positive?

This may be an impossible question to answer as it is not really possible to know how long you’ve been positive. You can get a test to see if you have been exposed in the last 6 months, but past that there is no way to know.

There are many possible ways you could have been exposed, but the majority of chronic infections come from mother-to-child transmission during birth. Otherwise it could have been any number of ways that exposed you to a little bit of blood since then, e.g. scraping yourself when you were a toddler or indeed any of the possibilities you have mentioned.

They may be no real way to find out, but in a way it doesn’t matter now. It’s probably more important and more useful to think about the actions you can do now to prevent any potential liver damage.

  • Can all of this just be a terrible nightmare and my results could reasonably be false positives?

You could possibly have one false positive test, but having all three as a false positive is pretty unlikely. If you are unsure however, I would raise it with your healthcare provider.

  • Given my results, it seems like I am “chronic” and “contagious,” but is that definite?

You will not know this until you get a HBV DNA PCR test, which will tell you how much virus is in your blood. This will give you an indication of how likely you are to pass on the virus to others.
With regards to whether you are chronic or not, the best way is to get a test 6 months later to see if you still have it.

  • If my wife turns out to be positive also, did she give it to me or did I give it to her?

I’m not sure you would be able to ever tell.

  • Is hep b virus even hereditary, staying dormant until some moment in the future?

It is not really hereditary, because it isn’t in the DNA. Just because your parents have it doesn’t necessarily mean you get it (there are prevention methods if we find out that a mother is pregnant).

The infection can however stay dormant for decades without any sign that you are infected. In a way, it is fortunate you were diagnosed now; many don’t know they have it until their liver is very damaged and failing. Now at least you have the knowledge and opportunity to act - get a liver specialist to monitor your condition, find out if your liver is damaged, consider treatment if your doctor indicates that it would help, and otherwise eat right/be active/sleep well to help your liver stay healthy.

Hope this helps.

Cheers,
Thomas

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Thank you Thomas.

I have a report. I visited my doctor filled with distress and higher than normal blood pressure results. I left feeling so much better. I would, however, appreciate your (and anyone’s) feedback on my experience so I can keep my mood in check so to speak.

  1. I gave my doctor the Blood Blank results which showed positive/reactive to (1) Anti-HBc, (2) HBsAg, and (3) MPX NAT-HBV.

  2. My doctor looked at the results and did not show any sign of worry or concern but NOT in a dismissive or disrespectful way (trust me, I would have another doctor if I questioned his commitment to my care). He looked at me and said, “I don’t see anything to worry about here. All it means is that you have had hep b in past 10 days, 10 weeks, 10 years, or at birth if your mother had it.”

  3. He added, “These results are so common. The bottom line is that your body has built of the antibodies so you kind of have an army inside you doing what they’re supposed to do.”

  4. He reaffirmed what I learned on web and on this blog about risk factors and spread. I explained that I did not fit the risk factors. He then replied, “You could have gotten infected by almost anything at anytime like a scrape, a scratch, using somebody else’s toothbrush…”

He also said that I very well could have had hep B when I was treated in the past for what was interpreted as a flu or cold or other viral infection (which I tend to get every 1-2 years). He said the virus may have just past through my body when I was ever exposed.

  1. I asked directly, “Am I contagious.” He replied directly, “No, you’re not contagious.” He also looked at my comprehensive blood work results from last visit around November 2020 and he said everything looks good including the results related to liver. Then he added, “My lack of worry on my face is because medically speaking, you’re boring. You’re doing all the things you’re supposed to be doing to take care of yourself.”

  2. HE ASKED ME if I wanted some more blood work done and he would do it to make me feel better. OF COURSE I SAID YES! He ordered the following tests: (1) Hep, diagnostic (Prof I); (2) Hep Panel (4); (3) Hep B Surf Ab Quant; and (4) Hep B Core Ab W/Reflex.

  3. My doctor also offered to give me the vaccine for hep B once I have completed the time frame for Moderna Covid-19 Vaccine in a week. I agreed to get it.

  4. He then gave me a “Patient Education: Hep B (The Basics” document from “UpToDate”.

So, should I be concerned? Sorry to be long-winded, but I think the detail helps with getting the best possible feedback from you and the group.

Thank you.

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How is it possible not to be contagious?

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Hi @hopefulone,

That’s great that you got to discuss this with your doctor so quickly and feel much better about the news.

To my understanding, if you were positive for all of the tests (that is, (1) Anti-HBc, (2) HBsAg, and (3) MPX NAT-HBV), then it isn’t possible at the moment to know if you are able to pass it on to others or not. I would wait for the results of your other tests to be sure first. A HBV DNA quantification test would probably be the right test to know for sure.

If you have already been exposed to HBV, there’s no real advantage of getting a Hep B vaccine. That said, it won’t hurt you, it just won’t do anything.

Also, if you are positive for HBsAg, I would definitely recommend you get a liver specialist (hepatologist) to just make sure that you are getting the best available monitoring. A liver specialist can order more tests that can give you a better indication of your liver health (e.g. a fibro-scan or ultrasound of your liver), so you know exactly how well you’re doing.

Cheers,
Thomas

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Hi guys, I am from Nigeria. I was diagnosed with HBV in 2011 after my secondary education. I’m healthy, Liver is fine and HBV quantification from last month says my Viral load is 111 IU/ml. I always find talking to health professionals here difficult as most (I’ve encountered) know little about the virus and the conversation is always depressing. I couldn’t talk about it for years and the only place I found solace and encouragement was the HepB mailing list but it wasn’t enough for me(I feel the platform is too formal). I started talking more about the virus about a year ago when I found a WhatsApp group (a group of Nigerians) where we share our stories, diet plans and protect ourselves from herbalist and the likes who claimed to have the cure. The virus have cost me 3 good jobs, I passed all the recruitment test except medical. Apart from my job struggle, finding a partner is another dilemma. I’m scared of starting a relationship that will end the moment I reveal my condition. The fact there is vaccine wouldn’t deterred people from discriminating. I’m glad to be here, I pray and hope a cure is found soon.

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Hi @Ridohllah,

Thanks for sharing your experiences. I would like to welcome to this community and hope you can find the support you need in here. I am sorry that you have found it such a struggle to get a job, but know that there are many here that have felt the same. It’s great that you have formed your own community where you support each other and can talk openly about it with some people you can trust to not be judgemental.

There is a thread here about how to approach dating and new relationships: Dealing with the diagnosis in a relationship. Perhaps this might be useful for you.

Thank you again for sharing your story,
Thomas

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Hi all,
My name is Fawole Abdulrasheed from Nigeria. I discovered I’m hep B positive in 2017 since then I’ve not disclose my positivity to anybody except (family members, my friend and medical experts).
I always feel depressed whenever I see people expressing the discrimination they have for hep B patient just like they do for HIV patients too.
But I’m happy that I’m here to see people like me coming together as a community.

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Hi Kim, it’s nice to hear from a fellow adoptee! I found out that I had hep b when I was 31 during a routine employee health physical when changing jobs (I’m a retired nurse now). The employee health doc called me down to her office during one of my shifts and dropped the bomb that I tested positive for hep b. Needless to say I was shocked, devastated and really afraid. During the late 1980’s we were treating hep b patients like they had HIV. They were kept in isolation rooms and we had to wear gowns, masks, eyewear and gloves. Yes, really!! So I thought for sure the diagnosis was a death sentence since that’s all I knew of hep B - people dying of liver cancer in the hospital. And at that time there was no internet and no organization to turn to for help or support. So my husband and I started the Hepatitis B Foundation to find a cure and help those affected (he’s a virologist and changed his area of research to hep b). To make a very long story short, the Hepatitis B Foundation is celebrating its 30th anniversary this year. And I continue to be in good health due to regular medical appointments and drug treatment for the past 15 years. Although I’ve switched to 3 different drugs over the years, I’ve been fortunate to maintain undetectable viral loads and normal liver enzymes. It would be wonderful, though, to have a cure like those living with hep C in 8 weeks. I’m really jealous! Seeing those TV ads with happy people makes me kind of sad, but I really can’t complain. Anyhow, thanks again for sharing your story and contributing to the community. Always, Joan

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Hi Ridohllah, I completely agree with what Thomas wrote to you already. I would add that when you have a chance to read the thread about dating and relationships while living with hep b, the thing to remember is that if someone can’t accept your hep b, then they’re not worth YOUR time either. Over the years, I’ve heard many single people come to the realization that it’s best to share your condition early on in the dating because you don’t want to waste YOUR time pursuing a relationship that will end. Believe, there will be a person who will love you and accept your condition, and that’s the relationship worth pursuing. So, the best advice is to try to avoid “hiding” your hep b, but rather, use it as a litmus test as to whether someone is worth YOUR time!!! Thanks for sharing your story and please come back!! Always, Joan

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Hi Fawole, welcome to the hepbcommunity.org. Really so glad that you found us and please know we are here to be a safe, open and supportive community. Most of live with hep b - some of us longer than others. Already, I’m 62 years and have known for the past 30 years. So even though I definitely experienced discrimination and rejection (was suspended from my job for 3 months until the hospital could decide whether I was “safe enough” to work as a nurse, and lost playdates for my child), I can definitely say that overall the climate is much more understanding 30 years later - at least here in the U.S. The biggest difference is that those of living with hep b are starting to feel more empowered to speak up (again, from my perspective here in the U.S.), to accept their hep b status and not let it become a barrier. Hopefully by building this hepbcommunity.org we can increase everyone’s self-confidence to overcome stigma and discrimination from a position of strength and support from one another. Thanks so much for sharing your story and please continue to share your thoughts on this forum! Always, Joan

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Wow! It’s disheartening to hear about the treatment back then!

So good to hear from you. And I’m incredibly grateful for your efforts and turning your experience into a positive one for countless numbers of folks. I was so afraid as well and thought that I’d surely be alone since some people did treat me like a leper and it was the 2000’s! However, more often than not, I encountered kind and curious people. I’ve been on Viread then changed to entecavir and then back to Viread since my count isn’t going down to undetectable yet. My insurance won’t cover Vemlidy so I’m staying positive that this second round of Viread will work. I have excellent care as well with consistent bloodwork and MRIs being done throughout the year. And my miracle teen daughter ended up getting it via birth even though she was vaccinated at birth, but then cleared it! So she won’t have to deal with the possible stigma of it in her life. I’m most thankful for that blessing.

I wait eagerly for a cure as well and keep thinking that it’ll be done during my time and yours!

Warmly,
Kim

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I forgot to ask! Where were you adopted from? I love hearing about those stories :grinning_face_with_smiling_eyes:

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Thanks very much @Joan_Block

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Hi,
Its quite comforting reading experiences, sufferings, tips and advice from individuals going through a similar issue as I’ve been going through. Its remarkable how relatable all of it is.

I got diagnosed with a chronic HBV infection back in 2008 when I was about 18 years old. I never had any issues until last year when I got myself tested, and discovered my ALT/AST levels were elevated, viral load was >5000 IU/ml and I had an F3-F4 fibrosis of liver. ((Fibroscan) kpa : 16))

My doctor attributed these issues to me being morbidly obese(BMI 36 kg/m^2) and an irresponsible lifestyle(No exercise, smoking etc) along with the obvious infection.

6 months later, I’m kind of doing well after loosing ~35 kg with a considerably low viral count and ALT/AST level and to everyone’s surprise, my Fibroscan kpa was 5.1 this time.

This event gave me a clear perspective about my life and taught me to be responsible about my health.

Also,
I’m a software engineer by profession and recently found myself interested in AI & Machine learning. In last 6 month, I taught myself and the topic and I feel there exists a lot of potential for its application in different areas of HBV research like diagnostics, treatments or may be a potential cure as well.

I would be thrilled If I get an opportunity to work on this field and use my recently acquired skillset to put into good use.
I would be humbled to get ideas from experts and fellow community members.

Regards,

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Hi @wyvern,

Thanks for sharing your experiences and you’re right that it is amazing how all these strangers across the world can be linked so closely with this shared experience and feelings.

I’m glad you caught your liver disease early enough that you could reverse them and it stresses the importance of ongoing frequent monitoring. The change you been able to achieve in just 6 months is remarkable indeed. Well done and congratulations!

Definitely in research (particularly biologists like myself) are always looking to partner with people who know the “dark arts” of bioinformatics, machine learning, and computer modelling :smiley:.

I have collaborated with bioinformaticians and computational biologists in my research career and it has always been quite productive. I am sure you will have no troubles finding partners in the field if you’re really interested in doing this sort of research.

Cheers,
Thomas

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Hi Thomas,
Really appreciate you for reading my little tale :smiley: and replying back.

Since I’m quite new to Machine learning and a tourist at best, in the field of Biology, I found myself, both overwhelmed and excited by the possibilities.

So, after going through heaps of academic research, I’ve turned my focus to diagnostics, specifically for early detection of NAFLD. I’ve got limited success (attributed to my limited experience and perhaps the very limited data I managed to gather over a week from local contacts and online sources) after trying few already researched topics like Logistic Regression and ANNs.

I’m thriving to get more exposure in the subject by talking to experts, finding more data, continuing my meta analysis of the algorithms etc. before eventually moving to collaborating with experts like you for a solid research, which I’m very much looking forward to.

Meanwhile any suggestions/inputs/ideas would be invaluable from you as well as fellow community members.

Regards,

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Hi Everyone! Congratuations @Joan_Block and to all those who made this possible. Hep B Foundation and Yellow Warriors Society Philippines have gone a long way and hoping to meet other organizations as well. Btw, am Chris current advisor of Yellow Warriors Society Philippines! Nice to see a converge of people here! Do visit us in our FB Page.

I hope everybody has doing well during these trying times.

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Hi @wyvern,

If you think you have some new knowledge to share, look for the senior authors on papers that you find interesting and perhaps just Email them. Couldn’t hurt. That’s pretty much how a lot of new projects or ideas get started. Good luck on this academic journey!

Cheers,
Thomas

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Hi @YellowWarriorsPH,

Welcome to this community! Great to see you hear and hope you can provide your expertise in the area to this forum!

Cheers,
Thomas

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Hi Thomas. Whatever I can do to help. :slight_smile: