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Author Topic: My story and some advice from a Chronic Hep B Carrier  (Read 14093 times)

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Offline luckyman316

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My story and some advice from a Chronic Hep B Carrier
« on: July 23, 2016, 10:28:35 pm »
If anyone has any questions after reading my advice and story,please feel free to comment or PM me. I'm always willing to help out!

With World Hepatitis Day right around the corner and my 3 year "anniversary" of when I discovered I had Hepatitis B, I wanted to share my story as well as some advice. I'll actually share my advice first because there is a common misconception among many on here who don't know anything about this disease and I've seen people take the wrong steps, so I figured any help would be a good start. I've been studying this "disease" since I first came to know about it and my story was scary. But first, let's get to some advice. I'll get to my story in other posts separated by months:

Vaccinate yourself and your loved ones:
Chances are, if you are on here, you already have the disease... so a vaccination won't help you. However, it will help to get loved ones (especially those that live with you) vaccinated from this disease so they never get it, especially if they don't have it now and have never gotten the vaccination. If you have not vaccinated yourself from Hep A as well, then I suggest you do so to help protect your liver. If you just happen to stumble upon here in research for someone else, and never got the Hep B vaccination, then please do yourself the favor and get it. You do *NOT* want this virus/disease.

Live a Healthy Lifestyle: If you are drinking, knock it off ASAP. It is only hurting you in the long run. For the most part, I do see people making that right move in cutting out the drinking. But even that "one or two" can set you back. Also, get as much as you can with fruits and vegetables and stay away from fried food and fast food. None of that is good for you. Cook at home if you can! Avoid any unnecessary medications other than your antivirals. They only hurt your liver more.

Make sure to seek a Hepatologist or infectious disease doctor: More than likely, you're regular doctor may not know how to treat this disease right. I was being seen by a GI Doctor who led me astray and it took my own research and thoughts to seek a 2nd opinion by a specialist in this disease to be treated right. If you can't find one, I'd recommend getting on the hepb.org website to see who is closest to you.

Determine if you are in the acute stage or chronic carrier:
If you are in the acute stage, then don't fret. Your symptoms will be bad for a bit but there will be a 95% chance you will clear the virus. This depends on you and the healthy choices you need to make. If you are ruled a chronic carrier (only the Full Hep B panel can determine this with some tests) then you need to figure out with your doctor if you need treatment. Some people do not need treatment, as the virus just stays dormant for years. Others, like myself, may become active.... even the slightest spike in your Hep B DNA will trigger that you require treatment.

Tenofovir (Viread) or Entecavir (Barraclude) should be your only choices: If it is decided that you need antivirals, then these should be your only two choices. Tenofovir is the more potent of the 2 and works best for most. Unfortunately, some people experience side very minor side effects from both so be warned and talk to your doctor about these side effects before and during treatment. If you opt to do treatments and nothing else, with Tenofovir they said it takes 15-17 1/2 years to clear on this alone.

Do NOT get on interferon right when you start regular treatment: For the most part, some people opt to go this way to see if they can clear the virus. This is actually a mistreatment of the way this disease should be treated. The correct procedure is to get on antivirals and be undetected from 3-5 years while on medication and THEN start the combo-therapy. It should be noted that not everyone will clear on combo therapy. It all depends on your Genotype. If you are Genotype A, then you have a GREAT chance of clearing on combo. If you are like me and are Genotype D, you basically don't have a good chance.

Just because you are undetected, it does not mean you cleared the virus:
This is the one thing that separates us from Hep C patients. When I tell people about my Hepatitis, their first reaction is "Oh, don't they have a cure for that?" to which my response is "Yes, for Hep C.. not B". If you are undetected, then great. You got the first step out of the way. However, the virus still lives in your liver and is tougher to clear because of this. You are not clear until you actually develop the antibodies and your HBsAg is negative.

Try to get your HBsAg measured in quantitative: This is a tough one because this measurement is not available in the United States. However, it will give you a clear indication of where your liver is with this disease depending on the numbers. If you can find it anywhere, then get it, it will only help lead you to the next step.

Monitor your liver and kidneys every 6 months: On top of the normal blood tests you are going to have to go through, it's recommended that you take other measurements to monitor your liver. Ideally, you want to get an ultrasound done every 6 months. If your doctor wants to send you for a biopsy, then consider asking them to send you for a Fibroscan instead. It won't hurt and it's been known to be more accurate than a liver biopsy in some cases. If you are on treatment, I'd suggest getting a bone density scan to monitor any bone loss and watching your kidneys as some of the medications are known to harm both.

Make sure to take Vitamin D3: This is a big big big must. Get your Vitamin D levels checked. If you are not between 100-150 ng/ml then start taking 10,000iu daily almost immediately. I know those numbers seem high, but this is how it should go for anyone who is a chronic carrier. If you have severely low levels, then take a high dosage first and then stick with the maintenance of 10,000iu daily. Do not take a pill from the doctor to give you 45,000iu for the week. You need to take the actual gelcap Vitamin D3. You can usually find it on Amazon.com or Puritan's in the 10,000iu per gelcap dose.

Get exercise: It's more than likely you will have to change up your routines with the exercise you normally do. For me, I became more weak from this virus, so I stuck with something simple. My suggestion would be yoga and some good walks for exercise. They are easier to do, less stress on your body and make you feel better overall.

Enjoy Life as much as you can, this is not the "death sentence": Ironically,a lot of people think this is it for them. It's not. Though it makes life a lot more challenging. I took this as a sign that I need to slow my life down and enjoy things more than I ever have before. Funny enough, I think I've done more enjoyable things since I have had this disease than what I did before. I've just been able to enjoy them in a different way.

Well, there you have it, the best piece of advice I can give anyone looking at this board for Hep B. I may edit the post if I remember anything that can stick out and is important, but as of now, this is what I have come up with. I'll try to get to my story about this but it may take a few days to post about it as I'll be doing a month by month breakdown. I sure hope I can help as many people as I can with this post. I'm determined to beat this and not let it beat me!
« Last Edit: July 25, 2016, 02:57:26 pm by luckyman316 »

Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #1 on: July 24, 2016, 04:54:42 pm »
So here is my story. Will be doing approximately a month a day until I feel it is necessary to no longer share or until I bring us closer to today. The goal of this story is to share with others, in case someone is or has experienced the same things and can benefit from my learning experience (or even share some advice). What I won't share are too many specific numbers of where I currently am, because I don't want to bore anyone, but I'll give some a general idea of what went on.

June 2013

I figured this would be the time to start. I remember the time well. Things were pretty decent for me at the time. I was feeling ok, though a little overweight from all the drinking I did the prior 2 months. I had a lot to drink in April for my birthday party and a lot to drink on a trip to NYC which saw me bar hopping from 4pm-2am with a friend of mine. Actually, it happened twice in NYC like this, but the prior time saw me just drinking at only one establishment there instead of many.

On top of this drinking, I'd often drink 3-4 glasses of wine on a weekend when I went out. Knowing that I had a trip coming up with friends who liked to drink, I decided to drink here and there during the week so I can build up my tolerance and keep up with them on the trip. All this, without realizing I actually had Hepatitis B at the time.

The trip was set. We were driving from the east coast and decided to go to Detroit for a Rock and Roll festival there. However, we were making a few stops on the way. Our first stop was going to be in Pittsburgh where we were staying over night. Because we didn't know what was around there, we decided to grab some homemade beer from a friend of mine to bring into the hotel room. While I might have already had one or two on the way there during dinner (I wasn't driving), I decided to try the homemade stuff as well when we arrived. We were so bad that I was even bringing the beer in the shower with me in the morning the next day.

We decided to find a place for lunch and the bartender there kept giving me free shots of Whiskey, which I reluctantly took but drank anyway along with the beers I had earlier. We left Pittsburgh and went over to Cleveland, where one of our visits was the Great Lakes Brewing Company. We initially wanted to get to the Rock and Roll Hall of Fame but it was closed, and it was a Friday night. We decided on the "samplers" so we can try each beer.

We arrived in Detroit a little around 12:30am after sobering up some. We decided to stay in the Motor City Casino and knew we were going to have a fun 2 days ahead of us at the festival. However, I wasn't tired and neither was a friend of mine, so we went to the casino, hit up some slots, listened to live music and visited every bar there to have a "shot". It was not the smartest idea and while my friend didn't want any more, I made him just try that "One more shot". I think we must have tried every type of alcohol they could have made at some point. The night ended, we got to the room, it spun around a bit and I passed out for the night.

The next day, Saturday, was the festival. Surprisingly, I did not feel hung over at all and was feeling somewhat decent. I was ready for a good time though I knew I this wasn't the time to be drinking as much as I did last night. Sadly, we each had a bottle of the homemade beer that we brought in the morning again and then got a cab to take us to the bus stop and eventually the festival.

The festival was fun in itself. It was Metallica's Orionfest which included Red Hot Chilli Peppers, Dropkick Murphy's and of course, Metallica itself. We got to see and do a lot during this time. While we didn't drink a lot, we would still have a beer here and there during the festival. The first day ended and we had to walk back to the bus stop and this is when I am pretty sure the first symptom started.

One of the issues with the bus stop to take us back to the main city was that it was very disorganized. Apparently they didn't know how to handle the crowd right. As I was standing around at the bus stop, for about 2 hours with a large crowd, I felt a very sharp pain on the right upper part of my back. Now, I've had this pain here for years and it started around the same time I experienced an injury while playing goalie in roller hockey. The pain was "nagging" since about 2003 but I always sucked through it. However, this time, the pain was VERY severe. I never experienced it like this before.

Despite having pain on my upper right part of my back, we decided to hit up bar for a late night snack and some drinks. I opted to not drink though, because my first thought was that I wanted to get back to the room I was staying in and take a motrin (harmful for the liver by the way). I knew something wasn't right though, especially being up at 4am to go sit on the toilet for an hour. The next morning, I was having some pretty bad pains from my stomach so I decided to not drink at all on a Sunday and take it easy with just water or soda (Soda is also not good for the liver).

Sunday came and went and I had to pop another motrin for the pain I was experiencing later one. Thankfully, it wasn't as bad as Saturday. I knew we were leaving on Monday though so I woke up and we all decided to finish any homemade beer we had left over. I remember sitting in the car on the trip home and something just wasn't right. I was feeling light headed and like my head just wasn't staying still on my neck. We ended up back in Cleveland for the Great Lakes Brewing company and I decided on two more beers to "kill the pain".

I remember we got to the Rock and Roll Hall of Fame in Cleveland and something just wasn't right. I felt much weaker than usual and even at a point where if I was going up some stairs, I felt like I had no balance and was going to fall. We decided that I was going to take the last leg of the drive later on at night when whatever I drank was out of my system. That last leg was brutal. Not only could I not see very well with some distorted vision, but I just felt very unbalanced and weak like I couldn't sit up right. It was not a fun time.

Unfortunately, I had to go back to work the next day but I decided to take it easy on myself for the next few weeks and see how I felt, give my body some time to relax before I decided if I wanted to go see a doctor. I figured it was just an issue with my upper back and it would take about 3 weeks to heal, so I gave it that time (all while still drinking some wine here and there at home).

End of June came around and I still wasn't feeling that great, though a little better than I was in early June. However, I wanted to see if there was anything the doctor could do. I had a little time off of work so I decided to make it into a doctor's appointment during the time off. I asked the doctor about my issue with my back and she took x-rays and ruled me with "Cervical Somatic Dysfunction" and need to do 4-6 weeks of physical therapy about 2-3 times a week.

I was going to start the PT in July right on the 1st but before I did that, I decided to also schedule an allergy test because my right nose was always clogged up or I'd get a lot of mucus coming out of there. Today, I have learned, that this was due to a congested liver as this symptom barely happens any more (and the symptom with the right back pain is gone 90% of the time too since I've been on treatment for my liver disease here). So it was scheduled and they wanted me to get allergy shots but I opted against it for some reason.

Well, there you have it, my story for June 2013 to start this off. Please keep in mind that at that date, I had no idea I had Hep B. The doctor did not order any blood tests but I'd later learn to discover it.. well, I'll get to that story eventually. Stay tuned for July!

Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #2 on: July 25, 2016, 02:44:18 pm »
Moving on to the next month, where things really started to get worse for me overall. While not bad, it was bad enough. So let's go on with it:

July 2013
My July started off with my celebrating a friend's birthday at a local bar. I would typically frequent this place and would stay up pretty late to close it out, but today was different. After dinner and a few drinks, I wasn't feeling right still. I'm a guy who normally stays out past 1am but right around 11pm, I felt extremely tired and decided to go home. I knew I had a long time ahead of me with Physical Therapy and allergy testing (this was done in July).

So I did my allergy testing and found out everything I was allergic to. I then decided against getting allergy testing as I mentioned before. I wanted to focus on my PT for my neck. A few days later, I started my PT for my neck. The first week went pretty well, however something odd happened the last day of my PT on my neck. As I was sitting at home, eating a tootsie roll of all things, a tooth which I had a filling in pretty much crumbled away on me. It was obviously decayed... or was this the reason? I actually think it decayed because my bones were getting weaker (lack of Vitamin D) from this disease that I didn't even know I had.

I decided to hit up the dentist the next day. He drilled out the decayed tooth, told me I was going to need a crown on top of what was left of the tooth and the filling, gave me a temporary crown and I was on my way. I decided to go see a live band that night but did not drink and stuck with a salad for dinner. I felt like I needed to heal after I was give lots of novacane to numb me, since I wasn't getting numb on that tooth (it didn't hurt when it decayed away but the drilling sure did!). I felt pretty good that night to be honest.

It was about a week later and I was into my physical therapy and they decided to throw in a bike exercise for strengthening the neck. I remember getting on this stationary bike and suddenly, I felt weak and like I was going to fall off of it. I decided to hold on to the handle bars and do the exercise. I pushed myself harder than I should have but something was still off. I then ended the PT with a ice/heat compression therapy and even when sitting on the chair, I felt very strange and weak. I never had this before.  My first reaction was that it was the electronic stimulation they were doing on me. I actually asked them to stop this because I was afraid I was not handling it right.

That same week, I remember we lost power. Though I wasn't feeling right, I decided to take a drive to meet some friends to get ice cream one night. I remember eating the ice cream just didn't seem right in itself. I was not actually craving it like I used to and got a smaller portion than usual. I also wasn't feeling right after eating it. I thought maybe the ice cream was bad, but nobody else had this issue. Then the worst happened.....

It was getting closer towards the end of July and I was sitting at my desk at work. All of the sudden, out of the clear blue sky, I felt a sharp pain in my head, got very light headed to the point that even if I did stand up.. I'd feel like I was going to pass out. I actually ended up running to the bathroom only to discover that I somehow developed a bloody nose. The only times I used to get bloody noses is when I was a kid at my family's vacation house. I was highly allergic to the trees there so this was the main cause. But this was different....

Naturally, my first reaction was "I think I have brain cancer, or a tumor, or maybe an aneurysm". My mother died from a brain aneurysm so these thoughts were all scary to me. I decided to go seek my main doctor, though I couldn't get in with him so I saw one of the top Physician's Assistants in their office. He decided to go ahead, take my blood pressure which was normal, monitored my heart with an EKG which was also normal and then drew blood and said I'd have results in two weeks. Knowing I was going through some PT for my neck, he also prescribed me Flexirol for my pain but it wasn't severe enough for me to take it so I skipped out. Today, I truly believe that the bloody nose and the sharp pain in head were a sign of my liver issue and things to come.

End of July came about and I was doing great with my PT, minus the electronic stim. They actually cleared me for a "light workout" at the gym so I decided to go and give it a shot. I did decide to take it easy for myself but for some reason, I was feeling a little weaker than normal. I attributed this due to the fact that I wasn't doing anything during the time for PT so I may have just lost some strength. Little did I know what was about to come for myself the next few months.....

Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #3 on: July 28, 2016, 10:30:08 pm »
Sorry for no recent update, needed a break from the story as I try to recall events. I'm going to try and hammer out August-October the next 4 days since those were my worst months. I may go back and edit things as I recall details. Please bare with me as I try to recall the exact details and order of how everything went down.

August 2013

So it was beginning of August. I just got done getting the crown on my #31 molar (it was a metal crown, I was no comfortable) and I was pretty numb from the novacane that day. I came home and got my results in the mail for my latest blood tests. Of note, my cholesterol was just a tad bit above normal, my triglycerides were not within range and a note that said "liver enzymes slighted elevated... please call office for follow-up appointment". My immediate thought was about my cholesterol. I know my diet and my habits were not right, despite me eating cheerios and other stuff for my heart a few days before my test. I had no idea what was about to come! I called up and I had an appointment with a new doctor 3 days later.

Before I went ahead to the doctors, I decided I would enjoy my weekend again. So I went out with some friends for ice cream and then to the movies. I remember it was the Wolverine movie. I was not right. I sat down and suddenly I felt like I was being pushed forward out of my chair. I was all the way on the top row, where I never had any issues. Something was "off" in me but I had no idea what it was, so I was holding onto the seat handles pretty hard while I enjoyed the movie with some popcorn.

That Monday, I had my doctor's appointment. I recall sitting in the doctor's office and I was just so weak in the chair when I sat down. I was actually leaning forward, because I felt like I could not sit upright. I recall getting in that doctor's office and she met me and immediately said "You're awfully jumpy!". My response to her was "Yes, I'd like to know what is wrong with me?" So she goes over my results and tells me to get in another room so she could have a nurse draw more blood.

So the blood gets drawn and the doctor comes back. I go over how I am feeling and my symptoms and she starts to, get this, put them online into a webmd symtom checker. Final conclusion? She tells me I have anxiety and says "I don't really know you too well or your demeanor, but I can tell by the way you jumped to greet me that you definitely are anxious". Meanwhile, I've had anxiety before, it never felt like this and I've never felt this way. She prescribes me Xanax and then recommends a cardiologist. At the same time, I ask her if she could recommend a good neurologist for me since something was wrong with my head and also prescribe me an MRI for a lump I had on my lower back (turns out it was nothing, she had that right too, just a fatty deposit). She refused to send me to a neurologist.

Lesson learned her by me, regular MDs will be the first to tell you that you have anxiety if there is nothing wrong with you. Especially since they get kickbacks from the drugs they purchase -- I used to work in Pharmaceuticals so I am very aware of this. So i take the prescription of Xanax, get it filled at my local CVS and just stare at the bottle. In the same sense, I made my appointment for the cardiologist in a week to go over my cholesterol issue.

The next day, I decided to get out a bit with a friend of mine. We wanted to hit "Taco Tuesday" at one of the local establishments as Tacos were $2 each and beers were $3 each. We had 4 beers each with 4 tacos each. I wasn't feeling good when I got there, but I definitely felt "Good" after all I had. So good in fact that we went on a drunken adventure and raided the toy section in Walmart. Whatever I had, seemed like it went away.

Then the next day, I got the call. The doctor's office said they wanted me to come in again to have my blood drawn and needed to have it done the next day. I asked them why and they said "Well, there was a mix-up in the lab and your blood got mixed with someone else and they thought they found something but with the mix-up, we don't know". I then ask them what was it was that's when they told me "Hepatitis B".

I remember coming in the next day for the blood work alone. I didn't meet with the prior doctor for more than 5 minutes, that is when she sends in the nurse. I remember looking in the examining room on the posters on the wall. About less than 10 years ago, I had walking pneumonia and this doctor's office gave me a pneumonia shot that pretty much cleared it within 2 days. So I recall seeing the vaccination list and saw Hepatitis B on the wall. My first immediate reaction was "Well, if I have this, no reason why they can't just give me a shot and clear it like my pneumonia". I remember when I had pneumonia, I was told if I waited 2 more days, I'd be lied up in the hospital bed so it's good I got that done before that happened. I figured the same with Hepatitis B.... how wrong I was!

So I went about my way after getting the blood work done and was a couple of days away from my PT for my neck ending. Some funny things happened at this point in time. During my PT, I remember I was doing some exercises with some stretch bands and as I was doing them, I was feeling light headed and a little dizzy. Something was "off" still. I also recall going to a Five Guy's Burger to get some food and as I was in there, the room did not seem right. I felt very off balance and like I was going to topple over. Something, was not right. Are you seeing the picture here?

On top of this, I got the call from my doctor telling me that they need me to come in for more blood work again. I asked her why and she told me "Well, we found Hepatitis B in you but need to see where you are now". I made an appointment for that following week. In the same sense, at the end of the week, my PT was DONE for good. I decided to go hit up my favorite restaurant for dinner. I was not right when I got there and someone noticed it. I was too weak to sit in my chair and one of the ladies there noticed I was PALE. She happened to be a nurse so she asked if I was ok, to which my response was "Yes, I'm fine. I just finished PT for my neck, that's all". But something else was not right and I had no idea what it was.

That same night, I went home and decided to take 2 Sudafeds for my sinuses. I had no idea bout liver conditions at this point and no idea Hepatitis B was a liver issue as well, but I took it anyway and then was asked to come out "for some drinks". I decided to go and had 3 glasses of wine that night. I was feeling great, but also very tired. I know mixing alcohol and OTC drugs was a bad idea so I went home and passed out for the night and decided to "take it easy" that weekend before two doctor's appointments next week.. one for the Hepatitis B and one for the Cardiologist.

I made my regular MD appointment on a Tuesday and discussed my status with Hep B with the doctor and asked her about the results. She basically told me that they were confusing, because at first it showed that I had an active infection but then it showed I was an inactive healthy carrier as she called it. I had no idea what any of this meant but she decided to draw more blood to get a complete Hep B panel, had me make an appointment with their GI Doctor in 2 weeks and then walked out. Before she walked out, I asked her if my symptoms were due to Hep B and she just shrugged her shoulders at me like she didn't even care and told me to discuss with the GI Doctor. She then handed me a pamphlet about Hepatitis B and how you contract it. I asked her what I do from here and she just said "all you can do is wait" in the nastiest of tones.

Later that week, I had an appointment with the Cardiologist to discuss my Cholesterol. I remember talking taking all the tests for my heart that day (EKG, Blood Pressure, etc.) I then talked with him about my results. He looked it over and asked me about my liver. This man was very knowledgeable, I could tell, I should have been more than a cardio doctor. I explained what they found and my current symptoms. He then went on to tell me that my cholesterol wasn't high enough for medication, it's more than likely I had vertigo from anything going on with me right now and said he was reluctant to prescribe me anything strong in case I had liver damage but chanced it with giving me Meclizyne (sp?) for my Vertigo. He also went over other results with me, such as triglycerides and and potassium and told me all the fruits and vegetables I should be eating and also said that I need to stay away from drinking for a bit. The guy was spot on and wanted to see me back in September.

That same weekend, middle of August at this point, I had two things going on. I had a cousin's daughter's birthday party to attend as well as football game to attend. I had season tickets to one of the NFL teams, something I did for years, so I was looking forward to it. Let's talk about the birthday party first. It was up on the mountains so heading up high, seemed to be an issue for me driving as well as walking up steep hills. Again, I was off balance. I recall talking to my cousin's grandmother from the other side who said "It sounds like Vertigo" and told her about the medication I was offered from the cardio doctor as well as regular doctor. I didn't want to take either but she swore up and down my the Meclizyne and said it's harmless. I decided I'd try it on Monday.

Sunday came around for the football game. My season tickets were on the very top section, up high on the stadium and 24 rows up. I got there and felt ok but when I started to climb up the stairs, I felt like I was going to fall backwards. I had a hot dog and a soda with me and we finally got to our seats and as soon as I sat down, I was in a panic and grabbed onto my seat for dear life because I felt like someone was about to just push me forward down the steep incline. I was with my friend and told him about this and he asked if I'd be ok for the game. I told him I did not know, but let me try to finish the hot dog and see how I feel. As I was eating it, I was shakey and almost dropped it. I caught it before it hit the floor. I eventually asked me friend if we could try lower seats, so we tried and same issue. We actually ended up leaving the game because I could not handle being in seats I was sitting in for the past 4 years. Again, something was "off".

That week, I decided enough was enough and since I was feeling this way and I had no answers in sight, I made my own neurologist appointment. I told them all about what was going on. When I walked in there, they said they were shocked I was there because they never get young people come in as it's always older people. They ended up sending me for an MRI of my brain that same week. I went and got results quick, which basically said my brain was completely normal but I had a small cyst in my sinus which just required follow-up. I told the neurologist all my symptoms, he performed some tests on me which were fine and told me I was having an vestibular dysfunction which would go away in two weeks time, so he wanted to follow-up with me then.

During that same week, I also saw the new GI Doctor. He went over my results with me and kept asking me "Do you know how you got this?" He started to tell me the only way I was getting this virus was either through sexual contact (and he proceeded to make hand gestures suggesting sexual stuff), through a blood transfusion or through sharing dirty needles. He then asked "Are you sharing dirty needles with anyone?" insinuating I was on drugs. About me, I a 100% against drugs, used to be against drinking and never had sexual contact with anyone infected with this or had a blood transfusion.

So the results were in and the first blood test for the complete Hep B panel showed my viral load was at "14,000". He suggested that I take more blood and come back to him in 2 weeks (beginning of September) to see how the virus is progressing. When I asked him more questions, he told me I was a chronic carrier and had nothing to worry about. He even said to me "You could have a beer a day and you will be perfectly fine".
Needless to say, I was skeptical about this but went about my way.

Since I had no idea what was going on with me, I decided to seek other alternatives towards the end of April. Explaining to people that I had "vertigo" (by the way,I took the Meclyzine for 3 days and stopped because he had no effect on me) led me into the direction of my first chiropractor. My stepmother felt dizzy one time and this guy basically healed her with some adjustments. I was willing to give it a shot, so the guy adjusted my back and neck after taking my measurements and told me to come back in 2 weeks if I needed it still. I felt great after that. So great that I played an ice hockey game after skipping for two weeks. I also found out that last week in August that I was going to now need a root canal on molar #30. I asked my dentist how long I could wait, since I was going through stuff. He said maybe a few months but not to wait too long.

Then right towards the end of August, the worst happened. I was working the stretch band with my neck exercises at home. I remember I was feeling tired that day (It as a Friday and I had a 3 day weekend coming up with Labor Day, with a cardio follow-up appointment on Tuesday). Since I was feeling tired, I decided to take a 5 hour energy drink. As I was working the band on the door, I suddely felt very dizzy and my heart was racing a mile a minute. I felt like I was having a heart attack but it wasn't hurting me or anything else. The dizziness got me the worst. Instead of calling 9-1-1, I opted to pack a bag and drive myself to my father's house so he could watch me that weekend in case they had to take me to an emergency place if it happened again. As I was driving, I again felt dizzy and almost fainted. Not a good sign.

It took me about a day to recover from things and thankfully, I had a cardio appointment on Tuesday so it was perfect timing for this to happen though I wish it did not. What I later learned was that your liver, controls a lot of your body's functions (including the heart). Amazing what this organ can do.

Anyway, sorry for the long blog post. I hope someone finds it helpful and I'll continue with September tomorrow, where things really got worse for me in an unbelievable way!



Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #4 on: July 30, 2016, 07:58:03 pm »
September 2013

We now approach September 2013 and this is when things were really bad for me. The progressively got worst. So I wanted to share what I went through. So right after labor day, I had two important appointments. The first one with the GI doctor and the next one with the heart doctor. The GI doctor was doing the usual follow-ups and confirmed that it looked like I was an ACTIVE chronic carrier. But to be sure, he needed to draw more blood to see where my levels were at. He again insisted that I was either sharing during needles or had sex with a prostitute and that was the only way I got this. I again told him no and no, I was against drugs and prostitution. He didn't believe me.

I got the results almost 2 days later and my Hep B Viral Load spiked up from 14,000 to 176,000. I was to see the GI Doctor again in October for a follow-up, he didn't want to see me until then. I asked him what I need to do now, and he basically said wait it out and live your life like your normally do. Don't change anything, you can even drink a beer a day and be fine (second time he said this). Meanwhile, my ALT was spiking up from the high 70s to start into about 140 at this point and my AST was also going up a little as well.

I took his advice, at least with trying to live my life normally, and called my job and told them I was not coming in for a bit until I figured out what was causing all these symptoms and I'd be working from home more. They were understanding about it but were NOT happy about it. My next stop was my heart doctor and I told him about my little episode. He decided to schedule a stress test for me as well as have me wear a heart monitor for 24 hours before the stress test to see what was wrong.

While I was searching for answers, I tried to live my life. Got to my favorite restaurant and sat around with some friends drinking some wine. I loved red wine and if I was having a heart issue, I heard this was the best thing for it. I was also still searching for answers so I decided to try a NEW chiropractor (Chiropractor #2) who my friend swore by. In the same sense, since I didn't know what was going on, I made the appointment with an ENT and also had a follow-up with the neurologist in a week.

Meanwhile, something odd was happening. I was feeling worse and weaker. I was sitting at home and I legit was dead tired almost at 7:30pm. The issue with this was that not only was I tired at 7:30pm and going to sleep early, but now I was up at 2-3am and could not go back to sleep. I remember one night I woke up at 2:30am and I was on my couch and all I saw was this huge bug next to my head. I immediately freaked out as it was dead and grabbed a napkin and threw it in the toilet. I started to think it came from inside my head and that was what was causing my issues, but unfortunately they didn't go away.

The first stop was the Neurologist, who told me it was going to now take another 6-8 weeks for me to fight off what I have with the Vestibular Dysfunction and in the meantime, he decided to send me for physical therapy for Vestibular Retraining Therapy. Next up was the ENT. I told him what I was going through and he said it sounded like a form of Meniere's disease. He was going to test me for that and opted to prescribe me some crazy medication (which I didn't take) that "may or may not clear it, but it's off lable".

I decided to schedule the test within 2 days to see what was going on with me. I don't recall what the test was called but I never want to go through it again. Essentially they blow hot and cold air in both your ears for a minute each. Then they put these crazy goggles on you and have you try to follow this red dot. That ends up all you see, since it's pitch black. Conclusion? Not menieres and nothing wrong with me.

Middle of September came and things were not looking any better for me. Not only was I super tired but now I was not hungry at all. I had friends come over to keep me company two weekends in a row, but unfortunately I had to kick them out of the house. I had some friends show up later as a matter of fact and they were there for 5 minutes before I asked them to leave. The one night, I decided to order us 2 pizzas from the local establishment. I love pizza and have often been able to eat an entire pie. However, I was barely able to eat 2 slices. My appetite was slowly diminishing.

It was getting close to the time for me to start the VRT training for 3 weeks. The VRT training was really nothing. It was more or less a training to regain your balance and give you some tests for BPPV. A lot of people suggested I get this checked out, because it sounded like I had this. To fast forward a bit, I went through 3 weeks of this without any real result and just felt the same.

Let's get back to the appetite issue though, shall we? I decided to stay at my father's house while I was doing the stress test for the heart. They started on Wednesday, had me wear a heart monitor for 24 hours and then do the stress test and ultrasound the next day. My heart was perfectly normal but what I did notice that in a month's time, I lost 18lbs. Right around this same time in August I was 215lbs (the heaviest I ever was in my life). 2 weeks later, I was 207lbs. I joked with the doctor's office that I guess I was losing weight since I was done exercising in PT. Not even a month later and I'm down to 197lbs.

I figured this was due to my lack of appetite (by the way, lack of appetite and weight loss and fatigue, all symptoms of the liver issue and Hep B). I tried to get some food in me while at my father's house but just could not eat. He suggested I try my favorite, a burger from my favorite restaurant. I decided to place a to go order for it. Picked it up, decided to have a glass of wine while there too since some friends were there, hoping this would help. I told people about my Hep B (not really making anything of it) and they commented that I looked great, and could tell I lost weight. I went home and tried to eat the burger but I was able to take 2 bites and that was that.

The next day, we had family come over and were having a home cooked meal. I recall I just could not eat it. I was also VERY tired again and ended up taking a nap while company was there. I recall us taking a family picture together and not only could you tell that I was in pain with something, but you could see that I was starting to get sick.

I decided to head back home after this, thinking that being around people was not the best idea. While home, I was in a panic. Why was I not hungry? Why am I feeling off balanced? (It was actually weakness) Why was I losing weight? Where can I go next for answers? In the same sense, I was constantly weighing myself and was losing the weight rapidly. From 197lbs, to 195lbs, to 193lbs to 187lbs to eventually 183lbs. All in a week. This wasn't normal! I've never had this happen before.

I figured maybe I needed to try and force myself to eat. I opted to go out to the food store and buy myself some food and what a disaster of a trip this turned out to me. I recall walking down the aisle and everything seemed like it was crocked and I was very weak and off balance when pushing the cart. I somehow made it through the store but it was brutal. I got home and had no energy to cook for myself or clean for myself (even today, I still lack some energy for these things). I ended up calling my father and my stepmother over to cook for me. They were going to make me some steak and some eggs as well as chicken so I had it for the next day. I recall trying to eat these things and just couldn't do it. The tastes were not right for me.

Since I was working from home the entire time (now sometimes starting at 4am), I decided to take advantage of it by going for walks more. I heard walks were good for people with Hep B and liver issues. I wasn't feeling right for the walks. I had the same feeling during my walks as I did in the food store. I also tried to get out to some local parks for the walk, in case it was just the area messing with me. It was of no use. I decided to try my hand in some yoga instructional video which I have done in the past, and I noticed I was weaker.

All the same while, my hockey teammates (yes, I play hockey) were wondering if we were going to have a season since I felt like I could not play and I was running the show for them. I decided to hand it off to my two alternates, and told them why I was missing (my Hep B) and asked they keep it hush from other teammates since I trusted them the most. Until this day, they have no mentioned a word to anyone.

End of September was rolling around and nothing was getting better. As a matter of fact, it was only going to get worse in October. Right now I had no appetite, extreme fatigue, weight loss, weakness, etc. All signs of liver issues with Hep B. What was to come in October was even worse, and I almost died.

Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #5 on: August 01, 2016, 12:34:40 am »
October 2013

Let us move on to October 2013, the last month where I experienced the worst of the worst. It was beginning of October and I was scared. I had no idea what was causing these symptoms but I had another doctor's appointment coming up to follow-up with the GI Doctor right in the beginning of October.

I talked with him again and he assured me I was fine as a chronic carrier. I told him about my symptoms, the weight loss, the fatigue, the off balance feeling, etc. He assured me these symptoms were not from the virus and told me this was all due to stress. He went on to tell me I was worrying about this too much and then went on to prescribe me Paxil (I never took it by the way, I refused because deep down inside, I knew this was not the issue). He told me to come see him next year, in January. In the meantime, he drew more blood to see where I was. I got the results back quickly within a few days and my Viral Load Spiked up big time to 4,000,000 (Yes, 4 million - huge jump from last month).

I went on and went home but new I wasn't right still. Being home was the worst for me, and not knowing what was causing my symptoms was a mission. I was finishing the VRT Physical Therapy and had no luck with this. I sort of gave up on here. It's now beginning of October, I'm home all the time, feeling weak and off balance and even afraid of heights now due to what has happened to me (I used to never be afraid by the way -- I've even stood at the edge of the Grand Canyon 10 years ago!)

Things were getting worse for me without answers and the rest that is about to come was just scary. I went from being extremely tired to suddenly not being able to sleep at all. Then, every single noise that I was hearing around my area, wasn't actually being AMPLIFIED for me and I was able to hear them to the point where I felt like things where right next to me. Trains 2-3 miles away, construction on the highway, neighbors leaving for work at 5am, etc. Everything just felt like it was right there. I had no idea what was going on, so my next order of business was a root canal on a tooth I considered getting a few months ago. I've been holding it off and I thought "I bet this symptom is being caused by the tooth"

So there I was, schedule to have a procedure to have the tooth looked at. In the same sense, I could not sleep for 2 days for the life of me. Not even a 1 minute nap. I don't want to get into to many details either, but I'll leave it at this. I also noticed I was unable to get an erection for the past month. Something was definitely "off" inside of me causing a lot of these symptoms. After not being able to sleep for days because I felt my area was too noisy, I called my father and asked if I could sleep at his house for a little bit until whatever this was passes. I also mentioned I had a root canal procedure being ready to get done so I was gonna need help.

That week was hell for me. The first day I ended up going to my father's house, I actually got very pale, felt very cold and weak and then started to shiver and convulse on his couch while my stepmother was there. She was afraid and was yelling for me to stop it, because I was scaring her. I couldn't stop though for almost an hour. I remember all of this very well though. She eventually had me go outside with her and take a walk to clear my head, which actually helped a lot. However, it only helped for that day. I ended up talking to one of the bosses at work and told them I was missing some time and was battling through Hep B. He went on to tell me he knew someone else with it and they lived a normal life. I explained the symptoms I was going through and he asked if he could help admit me to a top notch hospital to see if they can figure out why I was going through this. I said no, but I did not know when I'd be back (I was only planning a few days missed work but he took it as me saying I was going to take a leave of abscense)

I ended up going to the endodontist to get a root canal done. The first portion was for her to drill to verify I had deep decay. She could not find it, not even on the x-ray, so she sent me back to my dentist to get my tooth filled again. I go back to my regular dentist and he takes and x-ray and points out the decay he found on it and sends me back to her with the x-ray he had. So I ended up going back to the endodontist and she looks at it again and tells me she'll have to perform the procedure.

Anyway, she had me nice and numb from the novacane but I was kind of shaky. I explained to her what I was going through and how I have not slept in 3 days now and she send me home. She mentioned that she could not work on me in that condition, said I had anxiety and asked me to take xanax the night before my procedure and morning of and come back in 2 days. So, since I felt weak and could not sleep, I was working from home still and during this time, I was trying to work out a little bit on my stepmother's gym set she had downstairs. I was definitely weaker than I ever have been before, but my GI doctor recommended I try it to get my strength back.

2 days later came and I have not slept for 5 days at this point. No matter what I did, I could not sleep. Every noise still bothered me (even planes) as they sounded like they were right next to me when I heard them. The day came for my root canal and I went through with the procedure but it took the lady 4 good shots of novacane to get me back to being numb. She drilled and she found the decay and even said I had an extra root that she was not expecting there, so the procedure was more than she expected. She filled me up with a temporary filling and went ahead and asked me to get to me dentist for a permanent filling and a crown.

That same night, was horrendous. I was laying in med doing everything I could to just sleep. Praying to God I could sleep, counting sheep, listening to sounds on my laptop designed to help you beat insomnia, etc. Then one of the 2 worst things happened. I felt like my brain got a major "zap", there was a flash of light, my jaw clenched real hard and next thing I knew my ears were "ringing". I never experienced this before in my life but I told my father that I almost had them admit me to the hospital last night because I was afraid I was having a seizure or stroke. They told me I was crazy and I was just imagining things and that I needed to get some sleep. I kept telling them I was trying to sleep but no matter what I did, I just COULDN'T.

I ended up also having a dentist's appointment to get fitted for my second crown on my tooth. The minute I got there, I told my dentist I did not get any sleep and he just looks at me and goes "Dude, no. Go home. I'm not working on you with the condition you are in. Come back in 2 weeks or when you are better." The dentist was a family friend and I told him what I was going through and how they found Hep B in me. He then proceeded to tell me that his office had 2 other Hep B patients they work on. Part of me started to wonder if somehow they didn't clean their tools after one of them was in there, and I got infected from work they did on me at some point in time.

I decided to leave that day and headed to a friends house after 6 days of no sleep now. I mentioned to him that I needed a change of scenery and even a small nap if I could. He was fine with it. His wife even made me breakfast the next morning. One of the things we did was play fantasy sports together, so we sat there for our live drafts in leagues we were a part of. I recall being there and trying to not have issues but no matter what I was doing, I felt like any moment I was going to convulse and have a seizure or stroke or something was going to attack my brain. It was bad, really bad!

I ended up leaving the next day and went back to my dad's to get the remainder of my clothes and stuff I had there. I told them I did not know if I was coming back, but I was going home for a bit and if I needed to come back then I'd gather clothing and come back. When I got home, I was beat. So beat that I ended up crashing on my bed and I just could not take it any more as I had no sleep for 7 days and whatever was happening, just was making me worse.

As I lay there in bed, I begged and pleaded with God to please take me because I could not live like this any longer. I closed my eyes and asked they he take my soul up to Heaven. For a brief moment, I actually felt the soul being sucked out of my body and being sent up! It didn't though and went right back into me and I ended up...FALLING ASLEEP! I took a nice 3 hour nap at this point and I woke up and was THRILLED I was able to finally fall asleep. I called my stepmom, excited that I just fell asleep for 3 hours, and told her I was staying home since I was able to fall asleep.

However, I was still having a slight issue of being tired a little earlier than usual and now came the habit of falling asleep early again for a few days. End of October came and I finally said "Enough is enough! I'm forcing myself to stay up to the hour I usually stay up until and getting my sleeping patterns back to my normal routine". The best way for me to do so though, was for me to get out with friends.

So my first order of business was to attempt a movie with a friend and his girlfriend. We decided on a late 11pm showing of Metallica's new movie called "Through the Never". I purposely chose this time so I could stay up. Despite it being a smaller theater, I was having issues. Any scene with heights or spinning were just messing with my head, my brain still felt like it was being "zapped". I tried to have buttered popcorn as well as soda to distract myself away from it but in the same sense, I was holding onto my chair for dear life during the movie since I was getting some weird panic thing going on, something that has continued to happen during this but never happened prior to this.

Work ended up calling me at the end of October and asked me when I was coming back in. I told them I didn't know but I wanted to aim for November if I was feeling right. They then suggested that since I've been out of the office and working from home for 2 months, that I come in. They were looking at hiring "someone else" in the meantime since they needed a person in the office to do the work (FYI almost all of my work can be done remotely now). It was basically their way of saying they may fire me for not being in the office. I told them I'd do my best to be in there starting in November but I was really not in good shape and warned them I was battling through the illness.

End of October was fastly approaching and I got invited to my friend's annual Halloween party. Before I went there, I decided to go out to dinner on Halloween night to my favorite place which I have not been to for over a month now. Eating wasn't an issue for me anymore, my appetite was back. However, sitting there, I had a root beer and some fried shrimp and recall my brain again felt like I was being "zapped" and it was getting very foggy. I almost fell out of my bar stool a few times when there. I did end up getting to the party and had one or two beers there and walked home.

Well, there you have it for October. The worst of my story and symptoms were over at this point, so I may group up some months going forward to complete the story faster. I think I'll end up doing Nov-Dec 2013 next. I hope that someone on here finds this story useful in one way or another!

Offline morab

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #6 on: August 01, 2016, 07:42:10 pm »
I look forward to the next chapter!
Morab
3/2016 G 1a
Alt 84
Ast 62
Fibrosis score lab 0.66
quantitation 894,670
4/23/16 day 6, naive Harvoni 12 week treatment
5/27/16 week 4 lab results UNDETECTED AST 23 ALT17

Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #7 on: August 03, 2016, 07:59:26 pm »
I look forward to the next chapter!
Morab

Thanks, I am hoping I can at least help someone out with the advice and the story

Offline luckyman316

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  • Posts: 13
Re: My story and some advice from a Chronic Hep B Carrier
« Reply #8 on: August 03, 2016, 08:59:16 pm »
November 2013 - December 2013

It's now time to move on to the next two months. I grouped them up and will be doing that a lot going forward since the worst of it was pretty much over. November came back and I decided to get back to work. People were surprised to see me come in and commented on how much weight I lost but kept saying "No, you look good" when I was ashamed (yes ashamed) about it. I told them the weight loss was due to illness, not due to me working it off like I have in the past. I ended up seeing my boss who was surprised to see me, because he thought I was taking a leave of abscense and he told me they hired someone who was basically going to help out while I was gone (3 years later, both of us are still there and she has been a HUGE help).

Beginning of month, we decided to get me back to a movie mode so my friends came over and we went to Stewart's Root Beer as well as watch the 3 Lord of the Ring Movies in a day. Needless to say, I was still feeling messed up even sitting on my couch but I was sucking through it as best as I could. I recall that same week my friend's wanted to go "bar hopping" as well and invited me. The better of me told them "no", I knew any booze I would have was going to be a disaster for me so I slowed down at this point.. or so I thought.

I got together with friends at a bar for our yearly Call of Duty hangout the night the game was released. Decided to have two beers and then head to Game Stop. I wasn't feeling "bad" but I definitely was a little more buzzed than usual. The next 2 days were rough on me. One thing that I noticed was that the buzz/ringing in my ears was starting to intensify a little more each day. I had no idea what it was but I was trying not to let it bother me. The good news is that my sleeping habits were back to normal (I was up until 2am playing video games, but this time on my own free will).

Since I was feeling better than I was last month, I was getting out some more with friends every weekend... and drinking. Not a lot, it was usually one or two beers but after all, my GI Doctor told me a beer a day was not going to kill me and I'd be fine with it. So I listened to him.

Thanksgiving was fastly approaching. One thing I forgot to mention in all of this was that I have up my football season tickets to my friend so he could take whoever he wanted. There was no way I was handling our "seats" the way I was and where they were. Right around Thanksgiving, my friend asked me to go see a comedian with him and his father. I knew I could not go because it was inside of a steep theater and that was just going to mess with me. So I opted out.

Thanksgiving was a BLUR to me. I went to 3 or 4 different places and at so much turkey and drank a few glasses of wine in a few places. I ended Thanksgiving night at my father's house and had a good night's sleep there. Things were starting to get back to normal, or so I felt, but I was still having issues.

December came and one thing which I wanted to do, which I did not do for 2 years now, was put up my Christmas Tree. It was perfect timing because I had just reconnected with a girl I was interested in at some point in time and she offered to come over and help. She came over and was definitely expecting something that night, because she dressed in a nice sexy outfit and put on some good perform. When she asked me what my issue was with my illness, I ended up telling her about my Hep B. Her jaw just dropped, she didn't know what to say and we continued decorating.

I also started to get out to the casino a little bit. This was a mistake on my part, as the smoke in the casino that was being inhaled, was very harmful to my liver. I got there one weekend with some friends and I opted to drive them. I recall the drive was pretty brutal that night for me, because I was still getting those "zaps" which made me feel like I was going to pass out at some times. But I still somehow sucked through it and drove them there (and had a few drinks and dinner, I definitely was drinking a lot that night). One of the casino nights included a fancy dinner, that was fully paid for by someone who belongs to the high rollers club. The dinner was on the bay too. That entire night was just not right for me and I felt like I was going to throw up on the car ride home, thankfully I was not driving but my guess is that the steak and wine just did not sit.

I decided to see if I could give the movie theater another shot. I was feeling better than I was a few months ago and while not perfect, it was worth it. My friend, of course, picked the latest Hobbit movie and also picked one of those fancy theaters where there was stadium type seating and a fancy screen. Where did we sit? Close to the top. Brain zaps and feelings like I was going to pass out were had for 3 hours almost. It was the worst and I knew I was never going to be the same in a movie theater again.

Christmas was fastly approaching for me and I decided to splurge on gifts. I recall my Christmas tree being FULL of presents. I think this was due to a combination of me being bored, trying to stay active as much as I could and being thankful for everyone's support during these past few months. I can honestly say that I spent close to 2 grand on presents alone for EVERYONE. This was definitely too much for me to spend and was going to start a bad trend for me over the next year or so.

After Christmas, I recall one day where I decided to get buffalo wings from one of the local restaurants. I always liked their wings there, they had a spicy flavor to them. I took them "To go" but waited at the bar. Sitting at the bar, I was a disaster again. Feeling like I was going to fall off my bar stool, off balance, etc. I could not wait to eat though. I got home and scarfed down the wings, which were very spicy due to the amount of salt in them (if you have liver issues, cut out salt!) I recall the next day, my ears were started to ring even more intense than they previously were.

Ear ringing is called Tinnitus by the way. It can also be a buzzing and is usually only able to be heard by the person who is experiencing it. The cause, is typically hearing loss of some sort of from loud noises... neither of which I have or have been exposed to. Mine was different and I had no idea what was causing it but it was happening 24/7 for me. It wasn't just a slight ring or buzz here and there. It got so bad at some point that I decided to get myself an air purifier/filter/cleaner from Honeywell. This was also going to help mask the sound.

I decided that in order for me to try and beat it, I needed to go back to the gym and "work it out". So I did this and the minute I walked back into the gym, I was much weaker than I ever used to be. I was a guy who could easily leg press around 300lbs because of my strength and now I was struggling to do 150lbs. Basically, half of my strength was GONE. I was determined to gain it back though and ended up going for the next couple of months (with no luck) to get back to normal.

The New Year was approaching fast and as I came home after a New Year's Eve celebration where I drank a few beers and my friend's house almost burnt down, I pondered about what my New Year's Resolution was going to be. I'll talk more about this in my January 2014 story!



« Last Edit: August 03, 2016, 09:03:39 pm by luckyman316 »

Offline KimInTheForest

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #9 on: August 03, 2016, 09:41:50 pm »
Thanks, I am hoping I can at least help someone out with the advice and the story

I think you are doing a real service to the Hep B people visiting these forums, luckyman. There is not nearly as much first-hand Hep B experience posted here as there is for Hep C. Good work. And good luck to you! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline morab

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #10 on: August 04, 2016, 07:03:02 pm »
Luckyman
Yes keep us going with your life story, I know a person who has hep b so this is very interesting for me to read. Thanks so much for sharing!
Morab
3/2016 G 1a
Alt 84
Ast 62
Fibrosis score lab 0.66
quantitation 894,670
4/23/16 day 6, naive Harvoni 12 week treatment
5/27/16 week 4 lab results UNDETECTED AST 23 ALT17

Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #11 on: August 04, 2016, 09:03:31 pm »
I think you are doing a real service to the Hep B people visiting these forums, luckyman. There is not nearly as much first-hand Hep B experience posted here as there is for Hep C. Good work. And good luck to you! :)

kim

Thanks, yes that is my goal. To try and help as much as I can anywhere I can. I only know of one other forum that helps tremendously with Hep B. I won't list it here since I am not sure what the rules are but if you search my username in google, it may link to it and you can pretty much see all advice on there.

Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #12 on: August 04, 2016, 09:03:57 pm »
Luckyman
Yes keep us going with your life story, I know a person who has hep b so this is very interesting for me to read. Thanks so much for sharing!
Morab

Thanks, and I would be curious to know if they went through anything similar.

Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #13 on: August 04, 2016, 10:35:10 pm »
January 2014

It was the new year and as I rolled it in, I decided "Ok, enough is enough and l need to figure out what is causing these issues". I decided to write down the steps I was going to take to try and solve the problems:

-Chiropractor for the neck to see if it reduces symptoms
-ENT for the ears to determine what causes the rining
-Dentist for the crowns to see if they need to be redone
-Doctor for Hepatitis B

The Hep B doctor was my last resort. New Years Day, I also called a friend of mine and told her what I was going through and about my Hep B. She is a nutritionist so she went on to tell me that I needed to start on at least 2,000iu of Vitamin D, start taking milk thistle daily and also suggested a bunch of other Vitamins I should consider to help me clear Hep B and my other symptoms. So that same week, I ran to my local CVS almost daily and was spending easily $50 a day on all these random Vitamins. She also suggested that I get my blood test done for Vitamin D levels, Testosterone and not to rule out Lyme's Disease.

Thankfully, my next follow-up was with the GI doctor that same week. So when I went, I told him about all my symptoms to which his response was "Hepatitis would not cause any of these symptoms". I told him about how much weaker I was, and his response was "exercise more". I explained the tinnitus and he looked in my ears and goes "Nothing I can see causing that, might just be hearing loss". I also came in with a list of questions which he answered. He informed me that "You are going to live well into your 70s before you die of something else other than this. I have never had anyone die on me because of this and you won't on my watch either."

I went on to tell him about the Vitamin D I was taking and how I was taking 2,000iu daily and his response was "That's too much, reduce it to 1,000iu daily". I then asked him if he can draw more blood on top of my Hep B panel. He was reluctant but took it for my Vitamin D levels as well as Lyme's Disease. I then asked if there was a full Vitamin Panel I could take and he explained he could only draw so much blood from me (it was 4-5 vials total btw the way, which is absolutely nothing to me now). Before he sent me on my way, he mentioned that I would clear this virus in a year's time and if I did not clear it by the 1 year mark, then he was going to send me to an infectious disease specialist. He actually gave me the name of one, and this was very important for me later on.

Within the week, I got my results back. My viral load has now spiked up to 21 million. Yes, that number is correct. Things were clearly not getting any better for me at this point. On top of this, my Lyme's disease test was negative, my testosterone was low and my Vitamin D Levels were at 12 ng/mL when the range was supposed to be between 20-100 ng/mL. There was also a little note on there that said "Take 2,000iu Vitamin D Daily to fix deficiency". Jeez, thanks Doc! I told my friend about all of this and she said she would recommend at least 5,000iu daily and maybe even more depending on my situation. After looking around and finding an online forum for help on Hep B, everyone suggested 10,000iu daily to fix this and to take it with Vitamin K2 w/ MK7.

January was a tough month. My cousin came over with her daughter and they spent the night at my place. I recall her daughter banging away at my drum set and it only amplified my ear ringing that same night. I was in no mood for this but I sucked it up because it was family. After struggling some more and finding no answers yet, I decided to take my next step....

I reached out to an ex-gf. I almost asked her if she ever had or currently has Hepatitis B, because I was racking my brains trying to figure out how I got this. However, I refrained as I didn't want to raise any alarms. I told her I was having issues and thought it was maybe from my neck. I then explained that I recalled she saw a good chiropractor so I wanted the guy's name so I could seek his help.

So she gave me his name and off I go. He looked at my back and my neck. Confirmed that my neck did not have it's normal curve to it and also that I had scoliosis. He adjusted me once and told me to come back in a week. It was about a total of 3 times when I went to him for adjustments, mostly on Saturdays, before he didn't want to work on me again. Told him what I was going through and he honestly looked at me and said "I don't think I can physically help you but I know the best person in town that could as they are great specialists in these type of cases".

At first, I thought he was recommending me to a neurologist or a neurosurgeon so I took the card and went home and was about to call. But when I looked at the car, it was a doctor in psychology. The chiropractor (as I call them now, quack-o-practor) reccommended me to a psychologist! Part of me wondered if it was my ex-gf putting him up to this but whatever it was, I opted to never see the guy again. Until this day, I still get e-mails and texts from the list he prescribed me to!

There were two events this month that pretty much triggered my cycle in trying to get better. The first was getting back with my hockey team. While I was not on the ice with them, I was going to come and see all the games as well as coach when I could. I wanted to target a comeback sooner rather than later. Even sitting in the stands or in the locker room, triggered some of those passing out spells and brain zaps and in the stands, I was getting afraid of the heights as I was off balance in just the little height there was.

The next was the death of my aunt. She had suffered from a form of incurable brain cancer for 10+ years (she was told she had 6 months to live when they first discovered it and since then, she went through 2 rounds of chemo and went into remission twice). Sitting in the church, looking at my 70 year old aunt in the casket and not being able to sit still was brutal as I kept getting my "brain zaps". I was even apologizing to my dead aunt for being in this shape. Until this day, I had no idea how I made the drive to her funeral.. to which I was informed 5 minutes before burial that I was a Paul Bearer too.. but something needed to change for me to get me better!

Well, that pretty much covers January for me. I'll be writing more about the next few months this weekend, as they start to dwindle things down and become important steps in my findings!


Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #14 on: August 10, 2016, 09:54:30 pm »
February 2014-March 2014

Sorry for not updating the story this past weekend. Life has pretty much been moving fast for me, but that's a good thing as I'm enjoying the pace to help keep my mind off things. February rolled around and I recall the first major event that occurred was a blizzard at the beginning of the month. The reason why I recall it is because I was driving home from work that night and it was dark.... REAL DARK. I've never felt or seen so much darkness in my life. I basically couldn't see and my first reaction was that I was having issues with my eyes. So I made an appointment to an eye doctor to get things checked out, only to find out my eyesight was pretty much the same as it's always been. Then why did it look so dark to me?

Moving on about a week into February, I decided to see where I was at with being able to sit in theaters again in just a slight elevation. A bunch of friends and myself decided to go see a small play in NYC and it was just very difficult for me. I was clench the armrests the entire time while in the seats. But the weird part was that it was a "tad" better than I've been so something was happening for me. Looking back at one of the pictures from this gathering that I took with one of the actors, I can just tell that I was sick. Heck, I looked YELLOW in the picture. A few months later, someone actually pointed out to me that I looked better than I did in February when I looked "yellow" to them and was like that for a while. Meanwhile, here are all the other people in my life telling me I look great because I lost weight? I knew I was sick and that confirmed it.

But I still dwelled on that fact that my GI Doctor told me all the symptoms I was having, where not caused from Hep B. So, naturally, I continued to look for answers and was backtracking as to what I did prior to these symptoms. I kept pointing back at my physical therapy for my neck so after consulting with some friends, one of them gave me a chiropractor which they SWORE by and he has worked miracles. My main focus though was me thinking that the top cervical disc, C1, was out of whack and this is what was throwing me off. I decided to see this chiropractor 2 times a week, mainly on Saturdays and at times he would make emergency appointments for me. What I did know was that I'd feel great that same day but a day or two later, I was always in major pain.

Meanwhile, my tinnitus was getting worse. It was getting so bad at work that at times, I felt a huge spike sometimes and it would make me "jump". I was also getting different reactions, such as shakiness which made me think I had Parkinson's and muscle spasms on the top of my hands and also on my thighs. The tinnitus alone was the worst though, because my ears were getting severely itchy now and when the spikes happened, I just felt like the tinnitus was sounding more "metallic" and my brain was being zapped again. I can recall a few times when I was at work and just standing around talking to co-workers, I felt off balance and like I had to hold onto something.

Something needed to be done about this. So I decided to take two steps at the end of February. The first, was to get back on the ice with my hockey team and see if this solved any of my problems with exercise. The next, was to see an Ear Nose and Throat (ENT) specialist again. I decided to try a new one so I made an appoint but could not get in until 2nd week in March, which ended up being perfect timing for me. I recall getting back on the ice and the exercise did seem to help me a lot. But there were times, while in the locker room, where I just kept getting those zaps a lot. It happened a few times during the game as well but I was able to skate through them. One thing was for certain, I lost some serious weight so my equipment was loose on me but I was faster on the ice!

March came around and I continued to play ice hockey. I also stopped going to this new chiropractor since it was not helping me and I was feeling worse than before with my neck. I was still getting the 24/7 major tinnitus and since I didn't have my ENT appointment until later in the month, I looked online for sounds to help my tinnitus after much research about it. I finally found one that was sort of a mask that basically made your tinnitus sound the same way you hear it now. While I could not get the exact frequency, I came close and I noticed it helped me a bit. Meanwhile, I kept searching for other answers and had questions such as "Do I have lymes even though the test was negative?" or "Is this Parkinsons?" or even "Maybe it really is my neck!"

What I did know was that I had some tests coming up for myself as I was going places. To test myself again, in a different theater, I decided to go to a movie but this time in an area that was more flat with seating. While this seemed to help adjust things a lot and made me more comfortable, I was still having the same issues. It was as if I could not keep my head up and needed something to support holding my neck in place. However, I survived and it went better than any of the other past attempts.

I had a trip to Boston coming up for, you guessed it, St. Patrick's Day! I decided to tell my friends that while I did not mind drinking, I only wanted one or two drinks the entire weekend I was going to be there. My drink of choice was blueberry ale, which was always my favorite. Thankfully, I stuck with that "1 or 2 drinks" theory. The weekend was rough though for me, as we went to a concert at the House of Blues and while we were in the general admission standing room only, it was difficult for me to be in this area as I got the same sensations as I did in the movie theater. On top of this, I also got into a hotel room next to the Charles River and ended up having the get a room on the top floor. I wasn't too happy about this either, since heights were an issue, so I never looked out the window or got out on the balcony... something I would always do prior to this! Of course, one of the mistakes I made was having shots and beers on actual St. Patrick's Day when we returned home.

My ENT appointment was coming up and I explained to the new doctor, who happened to be good friends with my cousin, about my ear situation. He did some tests, looked inside of there, checked my hearing and ruled everything out but said I had high frequency hearing loss. He asked me a bunch of questions about my tinnitus and when it started to happen and was going to refer me for a brain MRI but I showed him I already had one and after review, he said my brain looked perfectly fine and the report showed nothing wrong that would cause the issue. I then told him about my Hepatitis B and he asked me if I was on any medication for it, as medication can cause tinnitus sometimes too. I told him I was not as my doctor didn't want me to start treatment for at least one year into my Hepatitis B. This doctor gave me the best advice I got, and told me to consider going for the treatment earlier and switch my doctor. He said he'd also be curious to see how I was doing and what happens to the tinnitus once I start treatment.

I still wasn't convinced though and since I was not properly healed, I decided to continue searching for other options. My next search led me to a wellness center that did the Atlas Orthogonal Technique. If you don't know what it is, I suggest looking it up, but it's basically a machine that supposedly aligns your neck and your head properly on your atlas bone. So I went for the first appointment and did a consultation, and explained to this new wellness doctor my Vitamin D deficiency. I told him I was taking 10,000iu daily and he told me "I'd up that to 20,000iu daily for now". He then proceeded to give me all these tests, telling me my one leg was shorter than the other, my feet were sideways and this was a clear sign of neck issues.

He then went on to give me an x-ray of both my back, not even my neck. He confirmed my scoliosis and then told me I might have a lower disc herniated in my back and wanted to send me for a stand-up MRI. I agreed to do it and he said their MRI place was going to call me to set up the appointment. He also said they wanted to take blood tests, to rule anything else out, but I refused with them as I did not want them to know I had Hepatitis B. The big issue with this was because I was from out of town but was just starting to see an ex-gf so I did not want her to know I had this in case it got around in her small town of my condition. She knew I was going through some health issues, but did not know the extend of it.. at least not yet!

Before I left the Wellness place, they asked for payment. Apparently my insurance from work did not cover Wellness centers and next thing I knew, I was paying $575 out of pocket just for a test and some x-rays. The next 2 weeks at the end of March, their MRI place kept calling me. When I answered once, I was told that they didn't take insurance and I'd be paying something like $4,500 for the MRI which would in turn be charged to me by the Wellness Center. I told them not to do anything.

Unfortunately, I still go hit. When I went back to the Wellness center a second time for a free evaluation by the actual owner, I was asked to sign up for CareCredit in case I could not pay some fees. So I did so, got a $5,000 line of credit and before I knew it, I was charged a full 5K on the care credit card by this place for the MRI I never went to as well as some "package" for wellness I never signed up for. I ended up paying for a while before I fought it and actually got the credit back, but money still got out of my pocket/bank because of it.

Well, there you have February/March. Sorry if some of this doesn't seem related to Hep B, but it's what I went through when I was battling it through my worst. April was going to become a VERY important month for me in this battle.... where I made the best decision of my life!

Offline luckyman316

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #15 on: August 30, 2016, 01:10:09 am »
Sorry for the delay in my story here. I've been just living life and dealing with some other situations in it. But I still want to share as much as I could. As I said before, April 2014 was a very important month for me. So let's start:

April 2014

I wasn't sure where to go or what to do at this point. My birthday was fastly approaching but I was still feeling the tinnitus and "brain zaps". I had planned to do a joint birthday with my cousin's daughter since we were 1 day apart and despite not feeling well, I still went.

After talking with my aunt and uncle, telling them everything that was going on, they convinced me o try two things: One more chiropractor and get on meds for my Hepatitis B. The weekend of my birthday, I went out and talked to someone I was friendly with and he swore up and down by a chiropractor who helped his neck. This guy was my last straw with the chiropractors so I gave him a shot.

That same weekend, I spent some time with the girl I was seeing a bit. She decided to go out with me and my friends and spend the night at my place (no sex was had, I was very reluctant due to my condition and her not knowing about it yet). We ended up taking a nice walk around a local park and some issues that I was having an issue with, seemed to slow be diminishing.

On top of chiropractor work, I also decided it was necessary to see a new dentist so I made an appointment to see one as well at the end of the month. The chiropractor work that I had done was by a guy famous in town with his own TV spot on a local channel. First thing he did was take an x-ray and go over all my issues with me on them. He swore he could fix me (They all do, by the way) but when I explained the tinnitus to him.. he said he could try some things, including accupuncture, but it's only a 50% chance to help.

The chiropractic work lasted for about 3 weeks before I decided to end it. To be honest, it felt great but it wasn't curing me of what I had going on for myself. The traction on my neck and back felt the best and I think if I ever go back, I'd ask them to go ahead and keep me on there for an hour. Lots of neck cracking though but this guy was careful with me and had his ways. Unfortunately, my insurance ran out with his office and it was either pay for it 2-3 times a week or not go. I decided it was time to "Not go" and explore the other option.

The next option was the biological dentist. The guy seemed to know that I had an issue with an internal organ. Whether or not he looked up my medical record or not, is beyond me, but I explained to him about my liver condition and hepatitis B. Naturally, I recall right before the new teeth cleaning, they had to put on a huge sticker on my records in red "Hepatitis B Patient". Wonderful.... not thrilled. I explained to him that I was clenching my teeth at night, had tinnitus and was not happy with my dental crowns as I felt like my bite was uneven. So he went ahead, made a night guard for me, cut down my gold crowns some and then suggested that I get new ones if that didn't help.

After this was done, I gave it a few days but there was no improvement. I decided it was time to make a change. Earlier in the month, I had an appointment with my GI Doctor and since I felt this guy was not treating me right, I cancelled it. I decided to take this Hep B thing more seriously and searched for a doctor in my state on the Hepb.org site. Low and behold, there was one right down the street.. an infectious disease doctor specializing in this! After looking up the office, I realized it was the same one my GI doctor suggested. I made an appointment for the end of the month.

Before I went for this appointment, I took some desperate measures. This time around, I turned to the power of prayer. Back in December, I was reading the bible more and begging God to heal me. I decided to look up miracle healing stuff and came across this miracle healing holy water. It came to me withing 2 days, after a small donation, with a little letter from the priest saying he put it in a basket for him to pray over as well as a pray card to St. Raphael, the patron saint of healing. I read this every day and applied the oil in my ears and my liver and my neck. I basically begged and pleaded for me not to have to go on medication and to clear the virus and my symptoms. Needless to say, it didn't work and the priest died a year later before ever getting a chance to pray or read my desired miracle.

My appointment came along with my new doctor. At first, I was skeptical of him because he wasn't getting the greatest reviews and my prior GI doctor did not give me a good feeling about doctors to begin with. Naturally, I came to him with all my lab reports and a list of questions. I remember the look on his face when I showed him this. He told me "You're not going to die from this, I can shake your hand and never get this from you and you'll be perfectly fine under my care".

Before he drew blood, he looked at my report and asked how long I've had this. I told him I knew about this since August 2013, 8 months now, and I came her on my own since my GI Doctor wanted to wait a year and I felt like he should have sent me right away. He said he was not wrong in waiting it out 6 months because typically 90% of adults clear this virus. But when he saw you were chronic, he should have sent you here. He probably didn't realize I was chronic. I asked him how I got this virus and he said "Typically, chronic carriers get this from birth or from the first 5 years of their live through some kind of contact when their immune system is at it's weakest." I don't think my mother had it, so suspect it was through other means. She's been passed away for 10 years at that point so I could not ask her.

He then peaked his eyebrows and mentioned my Vitamin D and said "That is way too low. You are below the lowest normal range. I'm surprised you're even standing right now. 2 more points lower and you would be in a hospital bed looking at death!"  Oh really?! Wow! I explained to him how my GI Doctor told me 2,000iu and he explained that for a normal person, yes. But for a chronic Hep B carrier, 10,000iu is the norm. I told him I was doing this since that last test and since I did not know where my numbers were, I asked him to draw it.

So, the blood was drawn and I came back in a few days. He laid it out for me as best as he could:

Chronic Hep B carrier confirmed
Never vaccinated for Hep A (I started this on this next appointment and now am fully vaccinated against it)
Genotype D
Tumor Markers (AFP) not a concern
ALT - 197
AST -96
Viral Load - 23 million (and change)
Vitamin D - 56 (back in range but still not high enough for me)

These were the main focuses on my test. I didn't have Hep C or HIV or Hep A or anything else. Just Hep B, thankfully! I was thrilled to see I was clear of everything but disappointed that I had Hep B still and the viral load was going up. I asked him what my options where and he explained the following:

1.) I could go on Viread (Tenofovir)
2.) Take entecavir (Barraclude)
3.) Participate in a clinical trial to test the new Tenofovir TAF forumala vs. The Tenofovir TDF formula

I asked him in his professional opinion, what did he think I should do. He said while he would typically prescribe Barraclude to his Hep B patients, he would suggest that I partake in the clinical trial through his office as it's free treatment and would not cost me a dime. As a matter of fact, I'd get paid for it! I told him I needed 2 days to think about it and I'd call him then.

After discussing with family, friends and my boss about this option, they all agreed that it would be the right move for me to make. So, I made the call and asked the doctor to schedule an appointment for me. He said there was some paperwork I needed to sign first though, basically a waiver form and disclaimer, for this clinical trial and all the agreements for it. So I looked it over, signed on the dotted line and made the appointment to see the doctor and the study doctor first thing in May (which I will discuss at a later date). Since then, this has been the best decision of my life and this doctor has practically saved my life!


Offline KeepingitPositive

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #16 on: July 09, 2020, 10:26:03 pm »
Does anyone know what happened to lucky man . His last live live logged in is 4 years ago . I been reading his story and help me out a lot ....  any update in regards about him ?

Offline KimInTheForest

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Re: My story and some advice from a Chronic Hep B Carrier
« Reply #17 on: July 10, 2020, 12:24:43 am »
Does anyone know what happened to lucky man . His last live live logged in is 4 years ago . I been reading his story and help me out a lot ....  any update in regards about him ?

I don't know. But you could try to send him a private message. You Click his name to get to his profile. And then there's a short menu, you click "Send PM" and that puts you into message mode.

There's not a lot of activity on the Hep B board. Most of us on this forum are (or were) Hep C. But I hope someone comes on!

Good luck to you! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

 


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