INTRODUCTION THREAD: People affected by Hep B

2 posts were split to a new topic: Changing doctors

@OlgaP
Оля, привет.
Я Дмитрий, мне 42, хронический гепатит В был с 3 или 4 лет поставлен. 15 лет назад пробовал интерферон-А, безрезультатно (только побочки были). В прошлом году (2022) без всякого лечения сдал маркеры и о чудо, выздоровление, днк вируса нет в ПЦР, и появился анти-HBsAg. Конечно после хрони полного выздоровления не бывает, так как вирусная ДНК остается внутри клеток печени, но зато при этом теперь вирус почти не размножается и наносит вреда печени, и только если иммунитет сильно ослабнет, то он может реактивироваться, но в целом при таком раскладе как у меня прогноз хороший, говорят что после такой редкой конверсии часто антитела ( анти-HBsAg) остаются на всю жизнь.
Что я делал для этого? Ничего почти. Просто спонтанно излечился. Начал пару лет назад делать йогу 1 раз в неделю, и еще иногда зимой раздетым на снег в лесу выбегаю на несколько минут (2-3), типа закаливания только не водой а снегом. Еще несколько лет много зеленого типа рукола, лук, петрушка, авокадо. Вот и всё! Видимо иммунке хватило этого. Еще за последние несколько лет поменялся в психологическом плане, возможно это тоже внесло свой вклад (по крайней мере я думаю, что внесло). Про психологические изменения, если интересно, могу отдельно тебе написать.
Будь здорова , )

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Dear @Eastwood37
I used google translate to understand your message.

We are grateful for your message and for sharing your journey with chronic hepatitis B. Your story is truly inspiring and we believe it will bring hope and comfort to many others who are facing similar situations.

We would like to focus specifically on the mental aspect of your experience and would be grateful if you could share your experience with anxiety and depression and how you were able to overcome these challenges. Additionally, we have a specific topic dedicated to food and activity changes that could help strengthen the immune system or stimulate our sprit.
We believe that your insights and advice different topics would be valuable to others who may be facing similar mental and physical challenges.

Your positive attitude and willingness to share your story is greatly appreciated, and we believe it will have a significant impact on others facing similar challenges.

We wish you all the best in this new stage of your life

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Thanks, am new here and just don’t know what to share and not to share here.or whether am using the right handle to give my story.
I was shocked when I was diagonized with CHBV in March 2022.
It was out of concern when one of my close friend died of HCC ,and through Google I got to know the major causes of it.
My first results showed in March 2022
HBsag 4043 u/ml
Hbe negative
Viral load 54
Liver profile normal
Also showed bit D was deficient at 65 and was given suppliment for that

2nd test in around Sept 2022
HBsag 4369 iu/ml
Hbesag negative
Viral load 60
Vit D tested found to be at 78

Last week I got retest and the results were as follows
HBsag 4693
Viral load 24
Hbesag negative
Anti hbe was also tested and found positive
I also did abnominal scan and the results indicated everything to be normal
I also did alpha veto protein test and this gave a value of 5.1
My vit D is showing a value of 61.1

My wife recieved now the last jab for HBV vaccine coz she tested negative when we went for the first test
I was so scared that my doctor prayed for me. I just don’t understand why this just happened to me .

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Dear @anonymous30,

Thank you for sharing your story. I think it’s good that you discovered your status before much liver damage had occurred, so that you can prevent it in future. Your low viral load is also a good sign with regards to risk of liver damage in the future and also low risk of passing it on to other people. It’s also great that your wife has been vaccinated to protect herself.

It sounds like you’re doing everything right and have got the information you need. Please feel free to explore the other threads and see how others have coped with their condition.

You are not alone,
Thomas

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Hey there, Rob @sloped876
You know what, I had been a chronic HBV carrier from age 11 to 41 (when I got spontaneously cured),
in the past few years I had frequently recurring myalgia fits, not as a diagnosis, but as a symptom that was not attended. It reminded me the drawling muscle pain I had when I was on interferon-A for HBV about 15 ago (like an echo pain from the past). This muscle pain episodes subsided when started to do yoga once a week and long walks and cold exposures. I even think that these pains may have been caused by my body reacting to HBV or trying to fight it (like it was unsuccessfully doing during interferon treatment).
Go ahead and read my story of spontaneous cure A story of achieving spontaneous functional cure after over 30 years of chronic HBV.
I sure hope you be inspired by it, or maybe you will find something useful in it.
Wishing you a long exciting life! :slight_smile:

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Hi there, Shoshana!
My name is Dimitry. I am the same age as you are. I had been a chronic BHV carrier since age 0-11 (exact age unknown). In 2022 I achieved a spontaneous functional cure of HBV. My fibro-scan now and also before the cure and gave reading of fibrosis stage 0 (no fibrosis whatsoever). Such condition can stay with you for life. I am inviting you to read my story of curing HBV without treatment.

I hope it inspires you.
Wishing you a long exciting life! :slight_smile:

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Hi everyone. My name is Williette and I was just diagnosed with Chronic Hepatitis B a little over two weeks ago and it has turned my world upside down.I was born in West Africa and am unsure how I got HBV. My mom and siblings are going to get tested. My liver enzymes have always been normal during my annual blood tests so we never tested for HBV.

This diagnosis has been really challenging to accept and has come with a roller coaster of fear, anxiety, and questions. Do I have cancer/cirrhosis? Will my life be cut short? What adjustments do I need to make and can I make them? My creatinine levels are a bit elevated, are my kidneys failing?

I am 33 years old and knowing that I have been living with the virus possibly my whole life and not making the best health decisions (drinking, not always working out, eating unhealthily) has me really thinking the worst about the condition of my liver. I am scheduled to see a gastroenterologist at the end of next month to get more blood tests, but that seems so far away and the emotions that I’m currently dealing with are so strong and isolating. I know that these emotions will likely continue for some time so I am allowing them to be while also speaking with my therapist. I appreciate this forum and the others who have shared their stories. It gives me some hope.

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Welcome to the forum, @Willienillie.

Thanks for sharing your story and sorry to hear about the stress you’ve been under. I hope you can see from all the others’ experiences described on this forum that you are not alone in feeling this way.

It sounds like you’re doing all the right things in getting your family tested and scheduling a specialist appointment. Please keep us all updated on your journey!

Cheers,
Thomas

Thank you very much Thomas ,I feel much encouraged as I come to terms with the situation and accept it as the new normal.
It’s good to have this group to learn and lean on coz no one can really understand this unless they are affected.
I am in kenya and ready to connect and going forward share my experiences.
Is HBV like HIV the way doctor described it to me is scaring she said it’s worse and more deadly.
My only solace and surprising is my wife plays it down and is the only person aware of my status.

Hi Williette!
I hope you did read my story of spontaneous cure of hbv. I had hbv from 0-11 to 41 and all my life (now and before) my fibroscan showed fibrosis 0 (no fibrosis at all). So don’t be frightened.
You said your liver enzymes were normal before. This means that your liver is ok, liver cells are not getting damaged. Such states may come and go from low to high and then low again and still after so many years i don’t have any fibrosis. Often in chronic hbv liver condition remains fine your entire life. You seem to be in good shape. I hope this will cheer you up.
Please feel free to ask any questions or just to talk about anything.

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HELLO All, @ThomasTu

Thanks for creating this forum, i am grateful to share my story with alot of people in same boat as me so it’s kind of encouraging, i had first diagnosed with help b in 2012 where i was going through routine check for some other issue , i tracked ot back from where i got it seems to be from a blood transfusion in 1991 at my birth when I had a life saving surgery, since 2012 I have gone through ultra sound scan , fibroscan, LFT’s and DNA for viral load and got to know from a liver specialist that my lft is fine and fibroscan score is also normal and my DNA load is negligible, I get paranoid episode in between and sometimes i just go in with life as it is , it is with me for more than 30 years now still wondering if it can suddenly harm me where my doctor says the virus is highly unlikely to harm you as it’s with you since birth , but due to anxiety i get my self in this continues loops sometimes back in 2018 i had this health anxiety and rushed to doctor again for all the test at that point also my viral load was not present and my LFT was just fine my doctor writes on prescription that no treatment required that does not give me solace and i am always go on web to search for answers where they write so many terrible things that can happen , i have never taken any medication for same and according to my doctor the virus was never active inside me but still I feel sad and sorry and ask sometime why me ?

I will be going for another LFT this year to check for my liver health as planned to be scheduled in next couple of months , just glad to be here and looking forward for any upcoming research that gets this virus totally out of my body once it for all.

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Dear @Pranay_Bahl,

Welcome to the forum and thank you for sharing your story. I am sorry that your hepatitis B has caused you such stress, but your doctor appears to be following the international guidelines correctly and liver disease progression is generally low in people with your blood results.

By chance, have you had a test for anti-HBs antibodies? If these are positive, then you would be considered to have successfully controlled the virus.

Yours sincerely,
Thomas

Hello @ThomasTu @availlant

what is termed as inactive carrier? and can there be any chance of reactivation? Never taken any medication for same always termed as no treatment required for it. Just paranoid on certain days and specifically very scared to take the test again and again please help

Hi, my name is Daniel. I practice physical therapy and enjoy outdoor things like rock climbing. I recently started dating a climbing partner, who has chronic HEP B. I was vaccinated years ago, and recent antibody tests confirm “immunity”. I hope to ask several questions about her health, my health and intimacy. I am truly grateful for this community, and wish everyone well.

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Welcome to the forum, @DBuddha! Great that you have come here to help support your partner and learn more about their condition.

Hope this community will help you both!
Thomas

I newly joined this community. I’ve read through a number of the postings and I’m glad that I came across this, the exchanges among members are valuable.

A background on my HepB case. (This post ended up long as I wanted to document as much as I can, please bear with it).

  • I am female, 49 years old. Asian (Filipina), currently based in the US.

  • I was not sure if I got diagnosed in 2003 or 2005. I was remembering 2003 but when I searched for old records the earliest I can find is from a 2005 paperwork where there is an HBsAg reactive. In any case, I was 29-31 years old when I got diagnosed. It was during a routine job health clearance. The hepatitis B positive result was a surprise, I didn’t know how I got it. The usual questions- did I get it from health clinics(dentist… Etc…), from sexual partners? from when I was a kid? (I remember that I got sick(flu-like) a lot of times when I was a kid, I was also anemic have joint pains), or did I get it from birth? I don’t know.

  • Family health history
    ○ Mother at 57 years old died of cancer. Diagnosed at a late stage. The cancer spreads to the stomach, kidney, and liver. We never knew where it started. We don’t know what type of cancer she died from. We don’t know if she even had HepB. What we know is before the cancer she had hypertension.
    ○ I have 2 siblings and both told me they don’t have HepB
    ○ Father died of complications from Type2 Diabetes at 65 years old. I don’t know if he had Hepatitis B.

  • When I was first diagnosed, I didn’t get to talk about this to anybody. I didn’t understand the full implication of this virus. I never had a regular, primary care doctor or annual checkups when I was growing up in the Philippines. At 21 years old after graduating from University, I got a job and got busy during my early career, at 25 years old I began to travel outside the Philippines for work. So when I was diagnosed at 30, I was busy with these that I didn’t give Hepatitis B much thought in terms of following up on it. Although, of course, I did feel guilt, shame, and fear that goes with first learning about it. The doctor who told me about my result, when I asked what it means told me that later on, it can develop into liver Cirrhosis. After I got the job clearance, I started a new job, traveled again, and didn’t look into Hepatitis B. It’s just at the back of my mind, it gives me a little nag from time to time but I don’t remember myself being too worried about it. I guess because I didn’t have a doctor, I didn’t educate myself at that time on this disease and also didn’t talk about it with anyone. My health in general I would say is average if not below average, or I’d say not optimal, I get sick with colds easily. I get fatigued easily. I feel sick, especially during my monthly period. I’m also susceptible to feeling low during my period. I also have migraine (left-sided migraine) a few times a month. I also have gastro issues for example bloating and gas. All these symptoms still happen today.

  • Fast forward to 2010 (5 years passed after my initial diagnosis)- I got married in 2007(my husband is vaccinated). I gave birth to my first (and only) child in 2010. I made sure during the time I was pregnant that proper measures are taken to avoid giving hepatitis to my child. Also, at this time I am already living in the US and more routine tests are being made especially during pregnancy. I started to adopt a healthier diet after I gave birth- I removed soda, dairy, and sugar. I educated myself on nutrition and tried various cleanses and diets. I also started to have doctors look into my hepatitis b although I was not regular in monitoring at least twice a year as suggested.

  • Only in 2015 that I started to be followed by a gastroenterologist. I get my regular bloodwork- liver and hepatic panel, as well as abdominal ultrasound every 6 mos. There are times when I can do it only once a year, and during the pandemic in 2020, I am not able to do a checkup.

  • Here are numbers that I could find from some years of previous bloodwork.
    ○ 2006
    HBsAg 3.027 positive (cut-off .039)

    ○ 2008
    ALT 18 (0-45 u/l)
    AST 19 (0-41 u/l)

    ○ 2009
    ALT 13 (6-40 u/l)
    AST 15 (10-30 u/l)

    ○ 2013
    ALT 17 (6-29 u/l)
    AST 17 (1-30 u/l)

    ○ 2014
    HBsAg- positive
    HBcAb- positive
    HBsAb quant 0.11 miU/ml (-<=999.99)
    HB DNA quantification 600 iU/ml (0-19)
    HB DNA quant Log 2.78 LogIU/ml (0.00-1.29)
    HBeAg- negative
    HBeAb- positive
    ALT 24 (-<=33 u/L)
    AST 26 (15-41 u/L)

    ○ 2015
    ALT 11 (6-29 u/l)
    AST 14 (10-30 u/l)

    ○ 2017
    ALT 13 (6-29 u/l)
    AST 14 (10-30 u/l)

    ○ 2018
    ALT 16 ((6-29 U/L)
    AST 16 (10-30 U/L)

    ○ 2019
    ALT 15
    AST 16

    ○ 2021
    Feb 1, 2021
    HBsAb - <5L (>OR =10 mIU/ml)
    HBsAg reactive
    HB virus DNA 2370
    HB virus DNA 3.37 logiU/ml real-time PCR
    HBeAg non-reactive
    AFT 3.5 ng/ml (>6.1)

    ○ 2022
    July 2022
    ALT SGPT 12 (7-52)
    AST SGOT 15 (13-39)
    HB DNA 3970 iu/ml
    HB DNA 3.60 log iu/ml
    HBSag reactive
    HBeAg non-reactive
    HBsAb <5 L (>OR = 10mIU/mL)

    ○ Nov. 2022
    Vit. D 18 (insufficient <20 ng/ml, optimal 30-100 ng/ml,)
    ALT 14 (5-40 )
    AST 20 (9-40 )
    dsDNA antibody 16 iu/ml (positive >= 10.0)

    ○ 2023
    Jan. 2023
    ALT 52 (6-29 u/l)
    AST 193 (10-35 u/l)
    HB DNA 1330 iu/ml
    HB DNA 3.12 log iu/ml real-time PCR
    HBsAg quant >25,000 (<0.05 iu/ml)
    AFT ng/ml 3.4 (<6.1)
    Fibroscan

  • Present time, from recent results above- I’ve got elevated AST/ALT (esp. AST) from the test last month. Last year’s test shows 3970 HB DNA, down to 1330 last month. HBsAg quantification is >25,000 from last month’s test. These numbers, plus the 20 years that passed since my initial diagnosis, and my age at 49 years old, are all the reasons for my doctor to begin treatment. He believes that my chronic hepatitis b is active and that my immune system is continuously fighting this cycle of keeping the viral load low, thus an up and down on my HB DNA numbers which he thinks is only damaging my liver. I don’t have a comparison of my HBsAG quant from the current >25,000 to previous years. I am waiting for the result of my abdominal ultrasound. My recent fibro scan result though is normal (161 cap dB/m, 3.7 E kPa)

  • For the start of the treatment, my doctor prescribed Vemlidy. I just received the 30-day supply by mail after going through the process of requesting co-pay assistance. The cost of the 30-day supply is 1088 USD. With the co-pay assistance, I was told that I can get a maximum of 5,000 USD per year to assist with the total annual cost. I plan to start taking Vemlidy in the next coming days.

  • On a different but maybe correlated note, is a marker that I was recently diagnosed on from Nov. last year test that is dsDNA antibody positive. This marker was ordered as part of a comprehensive bloodwork by a neurologist due to my migraine. The result of my neurologist appointment showed a deficiency in Vitamin D and this positive dsDNA. Also, I found out that I have high blood pressure. It was the first time that I get to have a high bp. My primary care physician prescribed Lisinopril 5 mg. I’ve been taking it for the past 2 months. Back to the positive dsDNA, I was told by the neurologist to make an appointment with a rheumatologist to further look at this for a possible auto-immune disease that may not be related to hepatitis B (e.g. lupus SLE, although my ANA result is negative). My hepatologist does not correlate the dsDNA positive with my chronic hepatitis. My rheumatologist appointment is next week.

I hope to give an update to the community from time to time on how the treatment goes and how is overall health in general as I live with CHB. Sending positive notes to everyone.

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Hi, nice to meet you guys, thats great to have a forum where also scientists participate. Thanks Stef for the link :wink:

Dear @crifid2023 and @sorte,

Great to hear from you and welcome to the community. Hope you find the support you need here.

Cheers,
Thomas

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