INTRODUCTION THREAD: People affected by Hep B

Hi @Bea,
Thanks for your question. I will encourage you to reach out to the Hepatitis Foundation of Ghana and they will be able to help you find a provider in Accra or near Madina. I believe they have a doctor that works at the University hospital in Legon. Let me know if you needed any further assistance. Thanks, bansah1

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@Bansah1 l will check and let you know how it goes.thanks for your time :pray:

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Hello, I started a thread here a year ago. My results have been good for several years: ALT normal between 20 and 30. HBV DNA viral load between 200 and 500IU. You can see them in previous posts. I had a break from research during the pandemic. When I made them again in 2023, it was: ALT was 28 in March and the viral load was 1210 IU. In August 2023: ALT 38 and HBV DNA 1680IU. Now in 2024 I made the results and they look like this: ALT 44, HBV DNA 2320IU.

  1. I’m worried about these results. The trend is upwards. I still have the impression that the Covid vaccination could have influenced this. Do you know such cases?

  2. What about treatment? I’m from Poland, do you know what I can count on in terms of medicines? Is there any hope for life without medicine?

  3. What about planning for children? Can taking medication affect the child’s development and wife’s health?

  4. Is medication safe in long term and gives good results and hope for long healthy active life?

  5. Is there any hope for cure?

I have taken care of myself all my life, I have lived a healthy life, and now I have my wings clipped. I feel like I’ve lost a lot of joy in life :face_with_diagonal_mouth:

Best regards
Bart

Dear @BaRt,

Thanks for your update and great to hear that your results have been good.

Regarding your questions:

  1. The difference between 1000 and 2000IU is not huge as the assay that is use to quantify this has an error of around 2 fold. Yes, it’s important to keep an eye on this, but this is not a significant change.

  2. People live long lives without medication, but having the drugs when they are likely to benefit you can improve your chances of preventing ill health and liver cancer down the line.

  3. There is no evidence that tenofovir will affect a child’s development. Entecavir is contraindicated for people who are likely to become pregnant.

  4. Yes, many people (including myself) have taken antivirals for long term and continue to live long healthy and active lives.

  5. Cures are under current investigation, see here for the current status of these:
    VIDEO: Community Information on the Progress Towards a Hepatitis B Cure

Hope this helps,
Thomas

Hi. Hoping I’m doing this right. I’m a married man who discussed my bi curiosity with my wife, engaged in the receiving end of unprotected sex and got an acute viral attack on my liver. Went through 7months of hell but have just about recovered. The meds caused unbearable itching and my psyche resulted in months of feeling dirty and feeling VERY alone. 9 months later my self esteem has made a decent comeback and so has my body.
Wish I’d found this site earlier as I (still) feel peer group would have been very helpful. Tried counselling but that didn’t work for me, at least, not as intended.

Welcome @Denny

Thanks for sharing your story. It sounds horrible what you have gone through.
Glad you have come out the other side wiser.
It can be quite amazing how our minds work when we do something that’s quite not right for us.
I’m going through something like that myself. Sleepless nights, feeling dirty. I’ve learnt my lesson….I hope😕
You haven’t mentioned HBV .
“Acute viral attack.” Can you go into more detail please? Sorry if I have not understood.
What virus was it?
Happy you have found us. We have a wealth of information, if you are interested.
Any questions someone would be able to help.
So don’t hesitate. We are here for you.

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Hello @BaRt

  1. What about planning for children? Can taking medication affect the child’s development and wife’s health?
  2. Is medication safe in long term and gives good results and hope for long healthy active life?

I agree with Thomas. I have had HBV lived experience since 1980. On medication for about the last 7 years. I’m now 63. I have no side effects. Had good results from medication and hope for long healthy active life.

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Sorry …it was Hep B. My enzymes that are supposed to be between 20-70 I’ve been told, were over 12,000. The liver specialist classified it as an acute attack. He’s treating it as early cirrhosis at this point. Will know more when I return to him on Oct 8 when I’ll have had a couple more tests. I start getting bloodwork done every 3months after the next one which will include a “load test”.
I echo your feelings of feeling dirty and alone…alcoholics have AA meetings but this disease, whether for privacy issues or simple personal choice, isolates us even more.

And that is why we have this group @Denny
There is more to HBV then just having it ., if that makes sense.
There is the whole psychological aspect which can have an effect on our livers. Stress isn’t good, so we need to manage that as well as keeping our bodies healthy.

There’s the stigma too. Unfortunately HBV is known, in Western countries, to be caught in the way we don’t talk about…,Sex and drugs. Which to some is dirty.

Keep us informed with whatever is on your mind.

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Well, I’ve come quite a long way since being diagnosed. I got dragged through hell but finally came through. I was being quite reclusive but am getting out more now. I’ve joined a gym and gained my weight back after just about everything between my skin and skeleton was sucked out of me in less than 2 weeks. My voice is back after it had been turned into a squeak from dehydration. I’ve been able to let some people that are close to me know about my liver being attacked without using the term Hep B or explaining how I got it.
Very disappointed in the medical profession EXCEPT for my liver specialist and his nurse practitioner.
I don’t mean to sound like I’m complaining because I’m not. I took responsibility for what happened right from the start. But it doesn’t make it easier to accept or resign myself to the future of living with this.
So much has changed…I’ve been able to adapt to most things but the inability to kiss or be intimate doesn’t help the feeling of being alone (different than being lonely, which I’m not.
I appreciate your kindness…thank you. And good night…it’s bed time out here in Canada. Hope you sleep well. Look up at the moon sometime and I’ll look at it and think of you.

Hi @ Denny,
Welcome to the community. I empathize with you regarding what you have been through. Please do not be hard on yourself. I had always believed that there are just certain things that no matter what our best efforts we just can’t control the outcome. I am glad to hear that you are coping much better now. Many of us continue to struggle after many years of being diagnosed. Don’t feel alone.

You and @Caraline are both right about the lack of conversation about this disease. At least we are trying through education and raising awareness to normalize conversation about this. Misconceptions and lack of knowledge about this virus lead some folks to make the wrong associations/connections. Anyway, I hope you continue to improve by each day. Let us know if you need us. Thanks, Bansah1

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Thanks for taking the time to write. “Years of struggles”…what unforeseen adventures should I be watching for or expecting?
I was misdiagnosed with some side-effects by our family gp, given faulty dietary info by an on call doctor at one hospital. My liver specialist is excellent and between him and his nurse practitioner, I learned what limits I should set on daily sodium intake, etc. you have to ASK questions because there is little volunteered. It’s been quite frustrating.
I hope Caroline gets to read this, too, as I find it hard to sit and text so please be patient as I will ALWAYS take the time to respond to anything I recieved…

Hi @Denny,
Thanks for your message and I understand the text or messaging problem, it might be tasking at times. Don’t overwhelm yourself with it, take your time.

For struggles, each patient is different. In your case because you got infected as an adult, you do have a higher chance (90%) of clearing the virus. So with this in mind your path might be very different. Once you clear it you will develop natural immunity against hepatitis B. These protection are as great as vaccination. Usually it takes up to 6 months to clear it (acute) and if it doesn’t clear after this time, then it becomes a chronic infection. I don’t know where you are in your journey. Hopefully, you are almost done clearing the virus.

Thanks, Bansah1

Yes…just about cleared…took 8mos. Getting a load test in 3wks. Unfortunately, the possibility of being infectious for the rest of my life will be my cross to bear…

It can be a slow process, but as long as you see changes in your numbers that is great.

I empathize with you but I don’t think it should be your cross to bear alone. You can’t live like that blaming yourself. Its not healthy for your system. Stuff do happen, we learn and become better/wiser hopefully. Keep up with your visits and let’s remain hopeful that you clear it completely in your next test.

Note: I hope you have shared this with the other person. The reason why we ask people to get tested is because many people with the virus are not aware and therefore can easily transmit it to others. We will keep raising awareness.
Thanks, Bansah1.

The other person? If you mean my wife, she’d been vaccinated because of her work so as soon as I got diagnosed (about 10 days after being hospitalized for 5 days) she got tested because we’d had intimate relations after I was released and at my most contagious. She’s gotten boosters to up the immunity but doesn’t trust the science so we do the cheek kisses which serves to remind me that I’m dirty. I know I need to reframe this.
As for the person that gave it to me…he remains an anonymous “donor”.

That is tough, but I can understand her side as well. It is an unfortunate situation all around, one time and then this happens. That really sucks. I am not sure what I would have done if I were in your shoes. I bet you probably hated yourself for a while. You are not dirty, she will come around when things settle and maybe she understands this virus a bit more. With her being fully vaccinated and boosted, she should be fine concerning getting infected. It is mostly transmitted through contacts with infected bodily fluid. There is no evidence of someone getting it through kissing. I wish there is a way to share this with the “anonymous donor” (I borrowed your words) so they can get checked and end the chain of transmissions. It is likely that this person does not even know they have this virus. If they do, then that becomes evil and criminal.
On the sunny side you do have a better chance of clearing it as an adult than I will ever dream of or even come close to winning the powerball in the US lol. Hang in there and let’s hope you are able to get over this health hump. Let’s remain hopeful and positive. Best, Bansah1

And how did dirty become dirtier? I noticed little globules on my arm hair. GP said it was folliculitis. Nurse practitioner rolled her eyeballs and said it was just another symptom caused by my liver shutting down.
Med combo caused itching to the point my wife would get up at night and find me in tears on the couch trying to claw out of my skin. Left some scars. Was given meds to calm the itching and told to try to avoid scratching to prevent the spread of this going to other parts of my body. I lasted about 3hrs and the overwhelming need to scratch got sated.
And it spread. From my arms, to knees, thighs, stomach, chest, heard and moustache. Never to my private parts or my head. And then hair started to disappear from these areas. And after a month I noticed little scabs had formed at the root of the hair follicles. Went to my GP who examined them and said yes, they’re little scabs. I spent about 5 weeks picking them off me, sometimes 2 or 3 times a day . Sometimes my wife would do it for me where I couldn’t see or reach. And I’d scratch at night, sometimes waking up to find I’d left stains on the pillow and bedsheet. And then it happened. After 6weeks of this torture, my wife was picking them out of my beard over the bathroom sink and one of the scabs had legs. I was infested with lice. Not nits but the adult, blood sucking lice. And after 6 weeks of sharing the same bed, they stayed on me…never found a single one on her as we returned from the emerge to de-louse.
I’ve been fine for the past 3months but occasionally scratch just thinking about it.

Oh wow, you have been through a lot. I am glad to hear that things are improving. I am grateful that your wife was there for you through it all. Please forgive yourself and don’t blame yourself too much for what happened. You didn’t know and no one knew this would have happened either. After happenings like this as humans it’s easier to be hard on ourselves and blame everything on us. Take it one day at a time and let’s hope for better days ahead. We are all rooting for you, Denny. Thanks, Bansah1.

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Thank YOU, Bansah…I feel like I maybe should be counting my blessings after reading the long term hardships many are experiencing.

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