Hepatitis Forums
Hepatitis B Main Forums => Hepatitis B => Topic started by: wohnny on December 06, 2016, 10:19:59 am
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My Story:
A bit about me: I was born in the US to Taiwanese parents who immigrated here in the 70's. Hepatitis B and Liver problems are very common amongst the Asian population though, largely undiagnosed. I didn't even know I had it until I tried to donate blood as a senior in high school and was rejected. I didn't think anything of it until I was about 23 years old (2006) and decided to see a Hepatologist here in Austin, TX. I had the option to wait and watch or get on therapy (.5MG Baraclude). I was eager to do treatment even though I knew I'd have to take the pill the rest of my life. During the first year, I will admit - I was not compliant with my medications. I'd say I took the medication 90% of the time but with Baraclude, 100% compliance is necessary as the effect of the drug only lasts 24 hours. Consequently, during that first year, my viral count would fluctuate. This would be caused by either non-compliance with the protocol or the fact that I was becoming resistant. Either way, my Doctor decided to double my dose to 1MG of Baraclude. My virus at that point went to undetectable and I have been undetectable for over 10 years now. Whether that is due to doubling the dose strength or maintaining 99% compliance, I am not sure.
The last 2 years - A new view on health
For the first 30 years of my life, I'd say I drank moderately, ate OK, lived an average stressed out lifestyle.
In the last 2 years, however, I have become extremely interested in health/wellness. I guess you could call me a biohacker, but I've delved into Ketosis / Paleo ways of eating, Functional Medicine, Adrenal Health - Stage 3 Adrenal dysfunction (6-9 months of DHEA / Pregnenalone Supplementation), Digestive Health through DRG Stool Analysis confirming I have 2 gut bugs - E-Coli, Entomoeba Hystolica and borderline H-Pylori (Gut killing herbs regimen for 2 months, Probiotics), and Organic Acid Testing. All this sounds scary but Gut Bugs and Adrenal dysfunction are extremely common nowadays. This is part of the Functional Medicine cure which aims to get at the root cause of issues. Starting with Adrenals, Gut/Digestion, and then to Detox.
My current supplement regimen includes:
2 Multivitamin packs with Magnesium, Calcium, Broad Spectrum Omega 3-6-7-9 and a multivitamin.
L-Tyrosine 1200 MG 2X/day (Low Tyrosine is very common amongst men)
Probiotics
Adrenal Fatigue Complex to help deal with stress and to help Adrenals to heal
I am in the Detox phase so yesterday I just started on Detoxifications Aminos and Liver Support "Meds". These are things like MSM, Cysteine, N-Acetyl Cysteine, Milk Thistle. They help Phase 1 and Phase 2 Detoxification pathways.
Licorice Root to help boost cortisol - confirmed by Dutch Adrenal Test
Pregnenalone to help body create Cortisol - Confirmed by Dutch Adrenal Test
DHEA to help sex hormone production. - Confirmed by Dutch Adrenal Test
If anyone wants specific links to the supplements I take, let me know.
My diet is extremely clean now with lots of good healthy fats, fermented foods, low carb and if they are carbs, they're typically not from grains or processed variety. I follow what's commonly known as a Paleo Diet. I was even Ketogenic for 1 month but found it a bit taxing. (Certainly a good choice if you need to lose weight though.) All foods I eat are Organic for the most part. All meats I eat are organic. Beef is grass fed/pasture raised. Eggs are pastured eggs. I eat only wild caught fish. I get sunshine in the morning, play Ultimate Frisbee 2-3X a week, weight train 3X/week, do Yoga and breathing exercises to boost my nervous system, installed a reverse osmosis water filtration system to ensure I don't drink Fluoride, Chlorine, switched to all organic, chemical free cleaners, toothpaste, shampoo, etc. I take collagen to help with gut healing, start everyday with Warm Water with SuperGreens powder, lemon and Apple Cider Vinegar. Suffice it to say, I think I'm doing my best to lead a healthy lifestyle. And given the enormous amount of research I've done over the last 2 years into health/wellness, I'm aware that it's not as simple as coming off the drugs, stop drinking and take some milk thistle. There's a lot of work and thought that has gone into this decision.
Could it be possible to stop treatment???
When I first started my Functional Medicine treatment, they ask you about your goals. My #1 goal was to get off treatment. Baraclude to my knowledge has not caused me any side effects. The operative phrase there is "to my knowledge". Every synthetic drug has some type of side effect downstream. There are obvious drugs like Statins (Lipitor) and Blood pressure drugs (Calcium/Beta Blockers) that wreak havoc on your body but Baraclude has never let to any obvious symptoms. However I still think that life without Baraclude is a better choice. I just don't like the thought of taking drugs for ANYTHING anymore. I'm not dogmatic about being anti-drugs but my thinking is that if I can support my liver function/health along with my overall body health, why can't I come off the drug? Getting your body's detoxification pathways working right (as measured by an Organic Acids Test) removes a TON of the burden on your liver as it is. If I can either slowly wean off or stop treatment and continue to support my liver, isn't there a possibility that I can successfully stop treatment? Now whether the virus comes back or comes back with a vengeance, I can't predict. But theoretically, even if the virus comes back, if I am truly maintaining good liver health as measured by the typical liver tests and even more in depth markers like Organic Acids, and I FEEL good wouldn't that be considered a success too?
Beyond the current Detoxification regimen, my Functional Doctor believes using Reishi Mushrooms and Cordyceps in the future can greatly help my liver support detoxification, liver and overall bodily health. I haven't gotten to that point in the regimen though. Functional Medicine is very thoughtful in its approach. You treat Adrenals over the long term, helping the body get back to a normal state of Cortisol rythym/production. Support/Heal Digestion before you go to Detoxification, etc.
What my Hepatologist says:
I have asked the Doctor if I could go back down to .5MG but he will not let me stating that the virus could come back even worse. In all my research, including the literature directly from Gilead, they all warn against coming off the drug. I have not come across anyone online that has stated that they want to or have already come off the drugs (with positive or negative results). I might seem crazy - Why would you come off a drug that has no side effects and keeps the virus at undetectable. AND to top it off is FREE - I get prescription assistance from Gilead. Some of it's principal. Maybe I'm naive and I truly think the body can take care of itself, if we just get out of the way. Maybe part of it's being tired of being prescribed drugs. Maybe part of it's wanting to stick it to big pharma for wanting to get us hooked on drugs. (yeah, I know that's silly). Maybe it's being tired of having to take a pill every night. Probably most of all, I think Baraclude DOES have side effects that I just am not aware of. How much better could my life be WITHOUT Baraclude?
What to do now?
Perhaps the best choice in the beginning might've been to not take Baraclude at all and "wait and watch". This is what my sister did and she "seems" fine. On the flip side though, My Uncle was just diagnosed with a liver Tumor. It's stage 1 but a big enough scare of the reminders of Hepatitis B gone untreated. My Mom also had cirrhosis in her Mid-40's. I"m not quite at the point where I'm going to stop taking Baraclude but my preparation over the last 2 years is leading me to that point, perhaps sometime in 2017. I will speak frankly with my Hepatologist and also seek 2nd opinions. I'm eager to talk to others who have done this and what their experience has been. Also, if you have gone through this, if you have a Hepatologist recommendation that would support me through this journey, or any advice it is greatly appreciated. I haven't brought it up with my Doctor yet but I get the feeling that he will not support this decision. I live in Austin, TX, USA.