Hi Fawole, I am from Ghana and I agree with you. The discrimination in Nigeria and Ghana is extremely terrible. It’s nice to e-meet you, Fawole. I am optimistic that there will be a day that a cure will be found. It’s actually awesome that there is a community like this for us to share our experiences with CHB.
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Dear @kimbopumpkin,
Thank you for joining the community and for sharing your story. I am sure it was a shock for you finding out in this way, it sounds like you (and your mother) got diagnosed before much of the liver disease occurred, so that may be a good thing to have come out of the experience.
I personally am not sure about how to talk to insurance companies about this. Perhaps @Joan_Block might have more to say, I know she had to talk to US health insurers about plans. Someone in Hepatitis NSW might also be able to help: @stao, any thoughts?
I am glad you found us (I saw that you said The Pulse article had led you here, so I’m really thankful that they ran it!) and hope we can support you through this time.
Cheers,
Thomas
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Hi Kimbopumpkin,
I’m a senior HBV researcher and can answer a few of your questions about the virus that were in your post.
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Most places do not allow blood or organ donation from HBV+ patients due to the risk of transmission to the recipient of the donation. There have been some cases of donation from HBV+ donor to HBV+ recipient, but I don’t know how common that is.
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You are correct that there has been relatively little improvement in HBV therapy recently compared to the remarkable results obtained with HCV. Rest assured that the research community is working as hard as possible to improve therapies, and there are a large number of promising, creative new approaches in preclincial and clinical studies. The HBV research community is optimistic that improvements are on the way, but predicting how soon is impossible due to the uncertainties inherent in scientific and medical research.
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Terminology. Your condition is a chronic HBV infection. You are also an HBV carrier because there are infectious HBV viruses in your bloodstream, although they may be at very low levels depending on your viral titers and treatment regimen. “Hepatitis B Virus” is the name of the virus, and it causes a disease called “Hepatitis B”.
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Variable pathology like you describe is fairly common for people chronically infected with HBV. The virus can replicate in the liver for long times (even at very high levels) with the person feeling no symptoms at all. At other times, patients have symptoms continuously. In either case, “flares” can occur when viral levels suddenly increase to high levels, and this is usually associated with an exacerbation of disease. This may be what you are experiencing.
I hope this information helps you. I wish you the very best, and I encourage you to seek routine medical care for your infection. Your physician will have the detailed information about your case and will be able to help you choose the best care for you. Fortunately, the existing drugs control hepatitis well and are quite safe when used as directed.
John Tavis, PhD
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Hi Kim, so glad that you’re proactively reaching out to learn more about hep b and how to live successfully with it. Unfortunately, so many people find out when in school or during employee health physicals (which is how I was diagnosed 30 years ago!). But it sounds like at least you’re able to continue your medical studies? And you live in Australia so your health insurance is probably much better than here in the U.S.
In regards to life insurance here in the U.S., we have to be honest about having hep b because the companies will find out anyway since they require blood tests and physicals. Fortunately, the companies seem to be more progressive than 30 years ago when I couldn’t get life insurance because of my hep b. Last year, I qualified but had to pay double the premium than my husband paid who does not have hep b. But at least now I and other folks with hep b can at least get life insurance! If an person’s employer provides life insurance then it’s not a problem since a group life insurance policy provided to employers does not (usually) require individual medical exams or disclosures.
For health insurance, as long as a person is employed then health insurance is available to anyone. The problem is when a person doesn’t have health insurance through work or is self-employed. Although these folks can get health insurance, they may have to pay higher premiums because of their hep b. When President Obama was in office, his Affordable Care Act allowed people with known preexisting conditions like hep b to obtain health insurance - a real breakthrough for these folks!
For you Kim, however, if you’re training to be a medical doctor then I assume you be will be employed and have ready access to both health insurance and life insurance. But please let us know if you have other experiences or questions. Always, Joan
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Hello Everyone
I am from Greece and I am new member in this community, you are really doing a great job in this forum . I have already started reading and getting information.
I would like to share with you my case . A few days ago I diagnosed positive to Hep B with an RNA test , 40 days after a sexual incident.
In my case the virus attacked to me immediately from the second day of the incident with flu symptoms like stomach pain, bowel problems and feeling a little dizzy . Three weeks later I started also feeling a light pain to my liver. Now 40 days after I have this pain to my liver, feel dizzy and strange taste to my mouth . I suppose that the inflammation to my liver has started rising .
My doctor initially couldn’t believe that HBV stroked me so fast. My AST/ALT are still low but I consider that they will possibly increase , I will start regularly checking them in the next weeks.
My doctor keep saying that in 80-90 % of people their liver will handle the virus and will be immuned . Do you believe that these statistics are true ? is there the same possibility for people of my age (47 years old) the body to react well to the virus ? or this normally happens to young people ?
Also I was informed that in the Acute period it is good to have strong symptoms like pain, dizzy , fever , but in my case the only symptoms are the ones that I described and I can consider them as mild . Should I except in the next months to have more symptoms?
Currently I am trying to find the way to share my problem with my family, really I dont know the way.
Even if I am at the early stage of HBV I will appreciate any information you may give me.
God bless you all
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Dear Panos, thanks so much for sharing your experience and asking such good questions. Since you’re 47 years you have a very good chance of getting rid of the virus and recovering successfully from this hep b virus exposure (meaning you will NOT have a chronic hep b infection). It can take up to 6 months for your immune system to successfully get rid of the virus so you should be checked then. Since you’re only at day 40 after the exposure, you may want to get wait to get retested no earlier than 2 months. But hopefully one of the scientists and/or physicians on this forum (calling Dr. Thomas Tu!) can clarify the time period. I just know that it can take up to 6 months to clear the virus, so one has to be patience. As far as the severity of your symptoms after being exposed, I’ve heard that the more severe the symptoms, the more likely your immune system is putting up a good fight. Again, one of the scientists and/or physicians will have to confirm if that’s true or not?
In regards to telling your family, it depends on how comfortable you are sharing private medical information? if you’re comfortable, then this is a great teaching opportunity for you to strongly recommend that they get the hepatitis B vaccine! And since there’s a vaccine called Twinrix that provides both the hepatitis A and hepatitis B shots in one syringe, that’s even better. The important thing to know is that you should be extra careful in not exposing your friends and family to your blood - don’t share razors, toothbrushes, earrings or body piercing rings, etc. You can definitely eat meals, share food, and hug/socially kiss them. But if you’re to have sexual relationships, then you must wear a condom to protect your partner.
Ok, I hope others weigh in to either support or correct what I’ve just written above. But most importantly Panos, we’re so glad that you found us and are seeking accurate information! Always, Joan
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Dear Joan
Thank you for your reply. I would be happy if Dr Tu reply to my message .
I am surprised that you mentioned to check also Hepatitis A , something which nobody (doctor) asked me to do, I will follow your advice.
As I understand at this stage there are two major issues. The one is to handle the inflammation , the pain and my symptoms and the second is to handle the psychological pressure until these 5-6 months pass .
The only information that I can share for other people that are reading my case is that for these first 40 days I still feel that I have the virus inside me , a little dizzy , a little diarrhea and light pain to my liver (bearable pain) that increase during the day from the pressure of the work or when I pick up weights . On the contrary it really helps me to run (jogging) and to make stomach exercises , it strengthen the area and possibly decrease the inflammation. And off course I stopped eating fat and drinking .
The only that I don’t know is how long these symptoms will last.
P.
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Dear @Panos,
Welcome to this community and thanks for sharing your story and experiences.
I’m a little confused about your mention of an RNA test to diagnose Hep B. Generally the first test for suspecting Hep B is a panel of tests which includes HBsAg, HBcAb (total and IgM), and anti-HBs. Did you get this done? It’s from these tests that you know that it comes from this recent incident. A HBV DNA test is done afterwards to confirm and is used (in combination with other tests) to judge if you need further treatment. Hep C (a different disease) is confirmed with an RNA test, so that is why it’s important to confirm which one you have tested positive for.
If you were recently exposed to Hep B, then your chances of clearing the virus are very high (80-90% as your doctor has said). The immune cells of adults can respond much better than babies and children (who clear the virus only 5-10%). The clearance can take months to happen as @Joan_Block mentions.
Different people will experience the clearance differently. Strong symptoms can indicate a good immune response, but it is not necessary when clearing the virus.
We have a thread talking about people trying to tell their families here - How do i talk to my family about hepb. It may be helpful to read this and maybe contribute to the conversation there.
I would recommend staying under clinical monitoring during this time and trying to see a liver specialist, preferably one that specialises in Hep B. There can be complications during this time that a GP may not necessarily know about.
Hope this advice helps.
Thomas
Dear Thomas
Thank you really for your answers, they are encouraging for me.
About the tests , the doctor informed me that it is early the virus to be detected with antibodies . So I did RNA test for HCV and HBV DNA for the existence of the virus . The information I had from the medical centre was that the virus HIV & HCV can be detected 15 days after somebody be exposed and for HBV 20- 30 days after somebody be exposed, with a 95% success to the results . The doctor suggested this method because he said that it is really important to find early the possible existence of HCV . The next step for me is to make examinations for antibodies for all the viruses , 8-10 weeks after the incident .
In the beginning ( two weeks after) I did some blood examination (Anti-HBc IgM , Anti-HBs , Anti-HBc IgG), I think these exams are about if I had HBV in the past , but they were negative.
P.
My name is Sulaimon, I am Hep B, I was diagnosed 2016 as carrier. This forum is a great idea to learn more about Hep B.
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Dear @saadepoju, it’s great that you could join our community and hope you find the support you need here.
Cheers,
Thomas
Hi @Panos, this seems like a reasonable course of action and looks to be consistent with an acute infection.
I agree with what @Joan_Block has mentioned in trying to limit any potential spread by not sharing any razors, toothbrushes, etc. during this time, use appropriate protection with any sexual contact, and make sure that any blood spills from cuts are disinfected appropriately.
You are not alone during this time, many of us understand what you might be feeling with the anxiety of test results. I hope you can find the support you need here to get you through this tough time.
Cheers,
Thomas
Dear Thomas and Everyone,
I’ve been silent until I had more to share. In short, I reviewed new test results with my doctor and he is a lot less sure of his earlier explanations as I shared in my earlier post. Of course, his change in attitude causes more stress and disappointment. Here is what I have now learned:
- Hep A Ab, Igm: Negative.
- HBsAg Screen: Confirmed “positive abnormal” from the blood bank results.
- Hep B Core Ab, Igm: Negative
- Hep C Virus Ab: <0.1 (I am not really sure what this means but doctor said I do not have help C.)
- Hep B Surf Ab Quant: <3.1. (Low). Not sure what this means but it seems like it is “inconsistent with immunity” – again, not sure what this means.
- Hep B Core Ab, Tot: Positive Abnormal (reference range: negative)
My doctor started out saying that I was infected in past 3-4 months which really freaked me out but I could at least pinpoint possible sources. But as we kept talking, he apologized and said that I am actually “Chronic” which is consistent with the blood bank results.
But my doctor explained that “chronic” could be any time period of more than 4 months or so to possibly more than 20 years ago. I am so angry right now that I am in that “unlucky” small percentage that ends up being “chronic.”
Last doctor’s visit, I asked if was was contagious and he said “no.” Now, he is saying that he is “unsure” because I need to now get tested for viral load (HBV DNA QNT – QHBV).
On the upside, my doctor reviewed previous results of blood work: liver enzymes looked good in past two test (2020, 2019). No red flags in any previous blood tests. Also, he was pleased that I’ve had no symptoms in past three years since being under his care. Of course, I can be asymptomatic.
Lastly, my doctor offered me the option (not required) of seeing the gastroenterologist who recently conducted my colonoscopy. I plan to wait for the viral load results first.
So now, I feel like my prayers are not working. I feel unlucky. I feel targeted by “the universe.” I feel like I am being punished. So, of course, I am stressed all over again while I wait for yet another test. (I am disappointed my doctor did not think of viral load test before now.)
At this point, I have decided not to share my story with anyone until I learn more. But I am thinking about asking my daughter to get vaccinated before stating college in the fall.
At some point, I will need to tell my wife for her safety. If she is positive, then we both will be stressed and confused. But if she is not positive, then she can get vaccinated.
Any thoughts or feedback on my latest story?
Any thing I should be asking my doctor?
Should I meet with gastroenterologist?
Thank you everyone for listening, responding, and sharing.
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Dear @hopefulone, thanks for updating us all on your most recent results. Sorry to hear about your experiences, it must be such a shock to you.
Just to give you a bit more background on your lab results:
Hep C Virus Ab: this tells you if you have been exposed to Hep C before, it is negative so your body has not encountered Hep C
Hep B Surf Ab : measures your protection against Hep B. It is high when you have been successfully vaccinated, and low when you have a Hep B infection.
Hep B Core Ab, Igm: This is only high if you have been exposed recently to Hep B, so this is the reason why your doctor said that you have been exposed a while ago (could be even just after you were born).
For this reason, there is no good reason to think that you are being targeted or punished. About 300 million other people around the world have chronic Hep B; it’s hard to say that all of them are deserving to be punished, particularly those that have been exposed at birth as newborn children. Some events just happen and we are no more targeted by Hep B than we are the rain when it falls.
You should remember that you are not alone in this, even if you don’t share your story with anyone around you. Many of us here are here to support you and know how you feel (including the anxiety of waiting for test results).
It might be helpful to read some of the other stories people have shared on this board, and know that in many instances your family can be the best support during this time and will not think worse of you because of your hep B:
- Dealing with the diagnosis in a relationship
- How have you dealt with discrimination because of your HBV status?
- How do i talk to my family about hepb
For the future, I think it would be good to see the gastroenterologist, particularly if they have good experience in Hep B. Otherwise you can see a hepatologist (liver specialist) which might be more specific. It is also advisable to get a fibroscan or ultrasound to see if your liver is damaged.
Take your time during this period. It can be very overwhelming and it’s important to be kind to yourself.
All the best,
Thomas
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Thank you Thomas for the feedback. Really appreciated. I am curious about something: How can so much previous medical blood work and urine tests and colonoscopies not reveal any indication of potential foreign virus like hep b in my system? Might this suggest a possible low viral load (I’m afraid to ask because I may get more disappointing news)?
Thank you.
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Thomas,
Do you recommend I get vaccinated for hep A and C?
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No problem, @hopefulone. We are all in this together!
You won’t see a lot of things in the blood unless you actually try to look for it. We didn’t know the Hep B virus even existed until about 60 years ago, even though people have had it for >80 million years (pretty much the whole of human pre/history).
The other thing is that hep b can be very sneaky and not cause any disease in a person for a long time. People may not feel any symptoms for 50 years after getting infected. So other tests may not be affected or changed by Hep B infection.
Yes, I think you should consider Hep A vaccination because you don’t want to risk the additional stress on your liver from a severe Hep A infection. This is something to discuss with your health provider if it is recommended for your specific situation. There is unfortunately no vaccine for Hep C at the moment.
Thomas
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To Thomas and hopefulone, this topic is of high interest to me. I’m still researching my results have also engaged the hep org in this country and more. Not since my tiny childhood has anyone ever taken time to discuss the results, I found out by the insulting nature my haematologist spoke and less treated me.
Greetings
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