Hi Rebecca, I’m really glad that you pointed out that hep b is a protected condition under the ADA law. That is a result of the successful advocacy of the Hepatitis B Foundation!! We had 4 different medical students contact us within less than 6 months who had either been asked to leave their programs or had their acceptance into medical school rescinded because they tested positive for hep b. They had all been vaccinated!! But, turns out they were vaccinated as young children and not at birth. Yep, you’re right … it was perinatal transmission. And all 4 were of Asian descent. To make a very long story short, the Hepatitis B Foundation sued the medical school that rescinded the acceptances of two affected students with the help of the U.S. Dept of Justice civil rights attorney. Our case rested, however, on the updating of the CDC guidelines for hep b infected healthcare workers and students (the last were published in 1991 and we lobbied the CDC to update them which were completed in one year in 2013 - a record turn around!). As a result of winning the lawsuit, not only did the students get compensated for their 3 year wait, but the U.S. DOJ added hep b to the ADA law. This means that in the U.S. a person with hep b cannot be discriminated against because of their medical diagnosis - accommodations must be made as needed. So @Neptune, do not fear that you or anyone else with hep b can denied care or services!!! Thanks again Rebecca … always, Joan
Hello Paul, Simone and Thomas, thank you so much for your comments and encouragements. I went to the endoscopy last week, since I figured it is better to find out if there is any abnormalities now then later. The procedure went well and the doctor found a single non bleeding ulcer and mild gastric. The doctor put me on protonix now. We are waiting for the biopsy. If the biopsy confirms the H pylori bacteria then I have to take antibiotics in addition to the vemlidy. That is a lot of drugs to take at once but that is something I have to do to get better. I am glad that I have found the forum for the people to share their experiences and encouragement and I am not alone in this long journey of chronic hepatitis b.
Hi everyone
Shortly after my diagnosis in 2012, I began to notice some intermittent irregular ulcerations in my tongue. They’re not that painful but can be very discomforting especially with spicy foods.
I found out it’s a condition called geographic tongue (benign migratory glossitis).
I googled it’s causes and found out it is not clearly known but liver diseases such as hep b could be a culprit.
I’ve been prescribed folic acid, multivitamins, mouth washes, which usually give some short term relive but not a solution. Other symptoms that sometimes come with it include upper abdominal pain and loss of appetite.
- Does any one have similar experiences?
- If yes, did you find a solution and how?
- Could it actually be related to hep b?
Kind regards!
Listowel
Hi @Listowel,
That’s an interesting one! I’m not sure if there have been any studies on this association (all I could find was a single case report where 1 person was put on tenofovir and developed it). I have not had this experience either, though would be keen to see if there are others who have experienced it.
TT
Hi everyone it’s been a while. I’ve been goin thru a lot lately just wanted to say I’m very thankful for what Thomas had created here an the very good people I have talked too since I’ve been goin on this platform for us to vent are problems an concerns. I have all my test coming up soon in February I’m a bit worried. I just wanted to give love an strength to all goin these tough times🙏
Thanks Eddie for your posting. And please do keep us up to date on your tests, etc. I’m really glad that you’re finding this forum supportive and helpful during this journey. It truly is affirming to have a community that understands what we each are going through or at least understand that living with hep b is a challenge in many different ways. Keeping you my thoughts! Always, Joan
Thanx for that Joan🙏 I’m keeping everybody all around the world goin through this journey in my prayers too.
This is copy paste health status which is not good I’m also not gaining correct weight…
Hi everyone, just want to wish all of you a Happy New Year. How are you all doing? I’m feeling bit down lately, always thinking how is the future going to be? I’m anxious and very scared especially when I need to do blood test and ultrasound, the waiting game for the result is not fun at all. I’m just here to look for comfort and reassurance. Thank you!
I m in the same boat. My blood work at US is due next month. I get scared. Not about HCC but viral level.
Best of luck!
Hi @Olive ,
Hang in there Olive, as long as you are taking your antiviral each day and staying on top of your checkups with the doctor, you should be pretty good on the HBV side of your health. I think most of us don’t change all that much from lab test to lab test although we all worry about, ‘what if…’.
On top of your daily meds, if you take care of your health and maintain a decently healthy lifestyle, then I think you can have confidence going into your labs and checkup. Think of it as anything else in life, you have done the work, the preparation and diligence, so you can go into whatever with confidence that you’ve done all you can. If something is going to happen then it’s out of your control and all you can do is re-assess, make adjustments and keep on fighting the good fight.
I hope that’s not too abrupt, but I don’t think you have too much to worry about unless you are already at a high level of fibrosis or have reached cirrhosis. If you have times of major anxiety where it disrupts the body and makes it too uncomfortable for you, and breathing deeply in and out for a few minutes doesn’t help, try this little trick; get an ice cube and hold it in your hand or place it against a part of your body that can feel cold very easily for a little bit. A little bit would be long enough that your body has the benefit of shock from the cold but not long enough to possibly burn or injure your skin. The point of doing this, is that it’s supposed to reset something in your nervous system based on fight or flight response to the coldness of the ice. That reset should nullify the physical feeling of anxiety in your body… for at least a little while. It probably won’t cure that anxiety but it should give you some relief in the moment.
I hope this helps and knowing that you are amongst so many people that understand how you are feeling about this and suffer the same thing to one degree or another, hopefully gives you some comfort also. Stay strong Olive, you can handle this!
-Paul
Hey Paul, thank you for your message. It means a lot to me to hear from someone that had experienced. I’m drowning in my guilts, i have a 4 months old baby. His pediatrician referred him to infectious disease because of my hep B status. He got all of the vaccines recommended but the doctor just want to be sure. I’m mad at myself for putting my son at risks. And living with this disease is just hard knowing all the complications and risks. I hope there will be a cure one day for all of us.
Hi @PuallyHBV,
It has been a little more than one year since I started this thread! I’m back now. I just posted an lengthy update under the “Upper right quadrant pain” thread if you want to read it.
But how are you doing? Have you conquered the fatigue? Are you still having the pain below rib cage which I can relate to?
Hi @Olive,
How are you doing? How is your baby doing? You mentioned baby had all the vaccinations recommended which I assume included HepB. I understand your thinking. When I was diagnosed, I read my daughter’s (now almost of legal age) immunization record AND THANK GOD it said that she had the HepB vaccination doses. But I don’t recall if that was just normal (probably so) or if something was triggered during my wife’s pregnancy.
Remain hopeful.
Hi @Joan_Block,
How are you? I hope you’re well. It’s been more than a year since I posted. I just shared an update on my situation under the “Upper right quadrant pain” thread.
Just wanted to let you know that I’m thinking of you. You and @ThomasTu are such a blessing to all of us!
Hi @hopefulone ,
Sorry for the delay in response, I was dealing with some technical issues and am now catching up today. It is really nice to see you back! I just read your update in the other thread. I don’t know what your circumstances were for having to move, but I hope that you can move to a more populated area, so you can receive more optimal healthcare – specifically for Hep B. I totally get you about the word ‘scarring’ for people with CHB. Maybe you can get a fibroscan when you acquire better healthcare options. I have never had one myself. I had biopsies done before fibroscans became on option and then once I was diagnosed with cirrhosis, I was told that fibroscans were not a necessary tool after the diagnosis of cirrhosis.
I concur with you that there must be some association with Hep B sufferers and certain pains, a lot of them being in the upper right quadrant. Many of us experience it but the answer seems all too elusive. I think the problem doctors have is that we can have so many types of pain in our body and in so many areas and there can be multiple explainable reasons for those pains, so they end up being associated to what they know and so the answer to why so many of us experience the pain is not sought out. As you say, hopefully having so many subjects and pool of data that this community provides, will encourage doctors to make a correlation and then an associated cause that pertains specifically to people living with CHB.
I am glad you are gaining some weight back. I lost a lot of weight after starting treatment about 6 years ago. So mine was lost before Covid. Even though I got Covid a minimum of two times, I slowly started gaining weight through Covid and like you have gained about 50% back…
The fatigue is always there. I think that just comes hand in hand with cirrhosis. Some days are better than others. The under the rib pain has subsided mostly. I was prescribed two neurological meds for the constant pain throughout many parts of my body. For the most part, they seem to be working but I can have flare-up days. One of the problems I deal with is a really low immune system. If anyone is remotely sick around me, I end up catching it worse than them and end up suffering through it for 1-3 weeks. In fact, I am just now getting over some cold or flu I caught last week.
Again, it’s really nice to have you back. You always have such encouraging, hopeful(one) and well thought out posts. It’s easy to forget that such positive contributors also need encouragement and understanding. Please don’t disappear for so long. You never know how many people you affect in this community and how important your words might be to even that one person, at that right moment. Thank you for being hopeful but also know that you can cry, scream, shout and be upset… you’ve earned it and you created this thread and that’s sort of what it was for right?
-Paul
Hi @PuallyHBV,
Thank you for your message. I apologize for my delay; I actually thought I responded but see that I did not. I’ve been posting in other areas of the blog and sometimes lose track where I am posting and responding (LOL).
Thank you for your kind words. You are quite positive yourself. I won’t repeat my updates here that I sent today but please look them up when you get a chance any offer any insights you may have. I have really appreciated your candor in your posts.
I just cannot believe that so many human beings on the planet (about 2 billion?!?!) have HBV!! 
I assume that this number includes statistical predictive assumptions and generalizations to the larger population based on some kind of dataset.
Well, take care of yourself. Stay hopeful.
I also miss @Joan_Block . I am getting a little worried because it has been awhile since she has posted in this community. I can only assume that she is dedicating more time with her grandchildren. If anyone has had contact with her, please let us know that she is ok.
If you read this Joan, please don’t be offended, I am not trying to butt into your life. It’s just that you are an icon to so many of us and we can worry about you too. You don’t have to worry about being inundated with too many posts to respond to. We know you have dedicated much of your life to this cause and have more than earned your time away. I have to admit though, that once in a while I wonder how you are doing, as I am sure many others do as well. Maybe just a quick ‘Hey’ … and then back to your lovelies.
Wishing you the best,
-Paul
I think you’re right that @Joan_Block is busy with family duties. Possibly if @chari.cohen bumps into her at the Hepatitis B foundation, she could pass on the forum’s best wishes.