My story and complications

Hello Friends

Myself Gourav Rana. You all can call me Rana. I live in Switzerland but was born in India. Is m 28 years old. I am living in Switzerland since late 2016. Got married and been settled here since.

So long story short. In august 2015 while I was applying to go abroad on a study visa. I found out that I am Hep B positive i was not aware of the disease and severity of it. Though doctor told me to give up the idea of going and study abroad and fix my Hep B first but dir to lack of knowledge and just a few consultations of a couple of uninformed doctors. I end up having some medical treatment for hardly a month and also some herbal medications (Ayurveda). I took my life journey forward and came to Switzerland in late 2016.

And as you all might be wondering in fear now that is exactly what happened.
I let it go for years and years. As I was busy in carrying my life forward. Working studying and being busy in whole life flow and specially having no proper information about the disease. I let it be for too long until now in 2023 I had few stomach issues and my wife insisted me to have a few blood test as she was going to do her yearly blood work as well. I did it and found out my liver enzymes were solid elevated.

That was the day and today is the day I have researched way too much and armed myself with the every bit of knowledge I can get. I am so well informed at this point the even my hepatologist suggested me to do some further study and be one myself haha. Well being aware of your disease is never too bad.

So right now I am on TAF (Vemlidy).
A funny story about this too. So as I found out my initial numbers were ALT was around 160 and AST was 80 something viral load was extremely high at 18900000.
As soon as I started anti vitals I had to stop it after 21 days just coz I was feeling some side effects including Tinnitus, feeling tired anxiety, felt like I can’t see properly, fade kind of vision. So doctor told me to stop it for a couple of weeks and let’s see if the symptoms go away.
As an Indian and our ancient beliefs in ayurvedic meditation so I consulted to a reputable Ayurvedic Doctor which has some experience in case of hepatitis B with Ayurvedic medicines.
I consulted him and he send me the medications.
After 9 days of total just Ayurvedic medication and total of around 30-31 days of total antiviral and Ayurvedic medication I did my blood work and I was shocked to see that my enzymes almost settling down and viral load left at 480 in/ml something.

Only then the debates started that which medication did this so what I did is that I went on with my Ayurvedic medicine and did the whole month course (just to let you know this course comes with a lot of precautions regarding food, I was eating a special diet with these medications but not something too special basically all butter fruits, milk, oil, sugar, extra salt, white rice and some other food were not recommended to consume). So anyway after that I went to the doctor for the ultrasound there was no complications just he said that my KPA was 7.4 which he said that will settle down as my enzymes completely settle. In that meeting my doctor told me and kind of we debated what exactly helped. So he recommended to start Vemlidy again. So being kind of scared with what we discussed as the consequences of having the disease spread on. So I started the antiviral but after 3 days and having a conversation with my wife we decided to stop antiviral again and let the Ayurvedic medication do the complete course of that month and let’s test if it’s just this helping or not. So after one month we tested and my viral load (260 iu/ml) came down again and my enzymes completely settled.
After all this I had a telephonic chat with my doctor and we decided that as my ayurvedic medicines ran out I needed to order them again from india. Doctor insisted me and put me back on Vemlidy saying that let’s do it for a month and see the tests. I was feeling super weak because of my special diet so I asked doctor can I eat everything now? He said yes in Allopathy we never ask for any kind of food precautions just alcohol and basically that’s it. Just try and live normal life and you’re normal he added. I said ok let’s give it a go as I was almost craving to go back to my old diet and also feeling that I need to start to live a normal life and eat normal.
I started doing that and stated Vemlidy but what I did was that also I kept taking my Ayurvedic medication but without all the precautions regarding my diet. Now as we recently did the routine check up in my ultrasound everything was normal just my KPA went from 7 to 10 and my liver enzymes were elevated ALT 60 and AST higher normal. Which is <50 here in my lab. I am still waiting on my viral load but I guess it could well be elevated as well.

Questions

My query now is that though I know that with Vemlidy you might get higher ALT time to time. But is it ok to keep taking it when my Ayurvedic medicine were working and I have proof of it. I took Vemlidy just for 3 days during whole 1 month course of my Ayurvedic medications with all proper diet. But as now I did not follow the diet and used both medications at the same time (with the recommendation of my doctor).

Is it not ideal for me to keep going with the Ayurvedic treatment?
I am still taking Vemlidy but if it will boost my KPA from 7 to 10 with in a month or so then how far will it be that i might get cirrhosis soon.

Please all let me know of any suggestions
And by the way I will not disclose the name of that Ayurvedic doctor but he is a renowned doctor in India and have even cured a lot of Hep B patient with clinical results and curing I mean S antigen negative.

I am super super scared at this point and waking up everyday looking at my eyes if they are already yellow or whatnot and I lost a lot of weight half of it because of the diet and halb because of anxiety and depression.

I have no idea how I got it but I tested my parents they are negative but then when in india I found I have Hep B we tested my older brother and he was positive too. Then I came abroad and he took some herbal treatment there in india. He is a stubborn man now he do not want to test himself say I am fine I don’t have it no more. I am worried about him too but no idea where we both got it from. I had just one girlfriend at that time of me find out about it and she came out tested negative for Hep B. According to my brother he says I got it from him and possibly he got it from somewhere. He started using razor and blades to chop off his beards early in life as he got beard quite in an early age so he used to go to some friends who might do his beards just as favour. Could be possible that he got it from there and then passed it on me because of the hygienic condition at those barber shops were never up to date.
Well at the end of it I have it and possibly my brother too as he was tested positive exactly at the same time as me. But don’t want to test no more.

Please do let me know of any recommendations suggestions anytime at all.
I feel like so so so super alone right now though I am surrounded with people.

And please excuse me if there are anything I wrote wrongly or anything coz I have no experience in writing stories online and in general.

Please reach out to me whoever wants.

Thank you :pray:t4:

Hello @Gourav_Rana
Welcome and thank you for your story.
I may be able to assist you in some of your questions but not all.
We have medical experts who will be able to answer your questions soon.
I Totally understand your anxiety and depression. I think it comes with the disease I go through anxiety and depression every time I take my six monthly blood tests and ultrasound. Nobody seems to understand, except this group.
Try not to dwell on where you got the disease, lots of us will never know where we got it from. I know it’s a mystery we love to solve but it’s just one of those things!
This disease makes us feel alone. Please don’t feel alone. We are in this together. I’m so grateful to have found this community, where I can speak my questions, anxiety,. that sometimes you never know where you got it from… I have a suspicion of where I got my Hep B from but really it can’t be confirmed. I’m 62 and I know I was diagnosed with it when I was around 20 years old.
I understand your worry of your brother, my sister has the disease she’s actually got Hep C as well as Hep B. She does not take care of herself or her diseases and I do worry about her as well, but all I can do is encourage her then it is up to her. There is no medical or geographical reason for her, not to be monitored.
Anyway, thanks again for sharing, keep reading all the other stories, and lots of information here for you.

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Thanks a ton Caraline,

As we all I don’t know how I got it best part that none of my parents have it. But yeah this community makes feel like someone is listening and we are not alone. Will do try and persuade my brother for the test and hopefully agree him to start the treat if necessary. Right now things are slowly getting back to normal after months of anxiety and trauma prior to my diagnosis and sure this group helps and while reading all the discussions I get most the answers I always was seeking for.

Thanks for the lovely message and let’s keep in touch.

Warm regards
Rana

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Dear @Gourav_Rana,

As mentioned in other threads, there is no conclusive medical or scientific evidence that shows Ayurvedic medicine works any better than placebo in trials (and in some cases they can be dangerous to liver health) Alternative medicines and "cures" for Hepatitis B - #4 by ThomasTu. There is no law guaranteeing what is included in these medicines, so you are never sure you are getting what is labelled on the bottle (even if you trust the person who is selling it, there is no guarantee from anyone along the whole supply chain).

Even things that are safe for many people can affect you in unknown ways. As mentioned in other threads, something as innocuous as a grapefruit can cause severe cross-reactions with many drugs. It is best to talk to your doctor about this.

It is unlikely that Vemlidy will cause your fibroscan to permanently be elevated. Indeed, trials show antiviral treatments will reverse liver damage in the long term (as it allows the liver to heal itself by preventing additional damage).

Thomas

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Dear @ThomasTu

Thank you so much for enlightenment. For sure I am on Vemlidy right now and have no plans looking out for anything else as it has dropped my viral load from 19 millions to 56 in/ml. But yeah the fibrosis I didn’t understand that how could it be so fast become 7 to 10 KPA.
I guess I’ll have a discussion with my hepatologist again. Though he said do not worry all is in order just keep taking Vemlidy.

Cheers
Rana

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