Hello AgE negative ABe positive?

Living With Hep B Treatment and Monitoring
1

Hello all.
Im not a native english speaker, thanks in advanced for your efforts to understand me.
I enjoyed reading this forum and i lower very much my anxiety and stigmatisation.
I wish all a good health
Im Alex 36 yers old, medical doctor specialist in psychiatrie, i practice in france.

I have bein diagnosticate in 2000 at 14 yers old with hep b chronic carrier whitin 2-3 years of periodical check ups ( i was hospitalised for hep a acute infection ). I dont have the results but i can search for them when i visit my parents.

I live in negation of my ilnes but awareness i can infect others …
It was a very anxiousness subject for me the denial was at a maximum level.
In the med school i somehow past over this subject i did not what to be aware of complications … witch was a very stupid point of view… and very imature …

In 2016 i need to see if i have the immunity to vhb or i need to do the vaccination …
I sort of lie the work doctor and made the blood test hoping i made the ati boodies naturali … but was not the case …

The blood work in 2 years interval
Hbv viral load 3 to 3,5 log or 5000 to 9000 ui/ ml
Atigen hbe negatif et ab positive for hbe

Hepatic markers in the normal range
Fibroscan < 6 kpa
Fibrotest F.0

VHc negative
delta negative

Stil imature and reste without testing until mars 2023
I stop smoking in December 2022 ( nasty grippe) i start smokig at 12 yers i change my whey of living start doing some exercises et eating more natural…drop from 105 kg approximately 220 ponds to 92 kg in 5 months…

Worried about my general health i become very aware of my hep b diagnostic and decided to make something about it …

So y made a self prescribe blood test to see where im standing in Mars( i was very scared to do it, insomnia lot of strees, after i stop smoking isomnia and night sweat was on daily basis)

Hepatic markers in range.
Viral load HBV ADN in march 29000 UI/ml
Alt 47 ( 0-55 normal range )

In june viral load HBV ADN 21500 UI/ml
(Alt 37)

Echographie incipient liver stetosis
Fibro scan 5.7 kpa and slight signes of liver steatosis ( faty liver)

Cholesterol frol 6.5 in march to 5.5 in june … upper limit range
After de first results i had a lot of panic and search of studies for understanding why i believed for many years i stil am a helthy carrier … and why i don’t need traitement.

I believe if the liver ia not affected and the viral load is < 20000 ui/ml i am in the safe zone.

After reading a lot i found litle in this range 20000 et 100000 ui/ml hbv adn.

My conclusion:

Aghbe negatives with positive antibody cand be a good factor if viral load < 2000 ui/ml but i also found some riters seeing it possibele to be cosider helthy carrier if loads of 20000 ui/ml … or maybe more

Or if viral load is very high ( i dont understant in literature very high 2000 + 20000 + ou 100000 + ) with aghbe negative it a pre c mutant ( with alt 2 to 5 Ă— N) with a very bad prognosis and not a good reponse to NAC traitement.

I am im the gray area , i didn’t found alot on this topic …
Many of u how shared your story u have litle hbv load ar extremely high.

I have to appointments with a hepatologue she told me a should start a treitement with out other explaining… on why … and she told me she will live for practice elsewhere very far …

I was 50/50 for traitement but i want a good Dr to be available and walk with me .

I have in October on apoiment with a another GI to asset the issue i hope will be more explicit.

What u guys thing i should start a traitement ?
How to know if is pre c mutant for sure ? Is it necessary?

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Hi Alex,
Welcome to the forum and I’m sorry you couldn’t receive better advice and information from your hepatologist about whether you should start treatment or not. I’m not an expert on lab results but there will be a scientific expert who will be able to answer your questions shortly!

Thanks,
Mylisa

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Hi @Alex1313

First of all–Welcome to the Community!

I am a senior HBV research scientist, not a physician, so I can only give general statements about your lab results. You are HBe negative and anti-HBe positive with a moderate HBV DNA level. That is a good sign because it indicates your immune system is keeping HBV in check at a lower level than is seen in HBe positive people. Overall, this is a good prognostic indicator because disease typically progresses more slowly in HBe negative people. I don’t know if you would fall into the treatment guidelines (many HBV+ people do not), but regardless, routine monitoring is warranted. Some of the clinical members of the community can comment in more detail.

Congrats on your fight with smoking – that is incredibly difficult! Losing weight as you have done is also challenging, so you are clearly working hard to make positive changes in your life. Your emotional reaction to the HBV diagnosis is also normal, as is the uncertainty and stress associated with it. I am not HBV+, so I can only offer you my support. However, there are many HBV+ members of our community who can discuss those pressures with you and help resolve the intense anxiety you are under.

I wish you the very best!

John.

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4

Dear @Alex1313,

Welcome to the forum and thanks for sharing your story. We do have some French speakers on the forum (@mariondelphin, @e.verrier, @julie.lucifora, @Gilbert), so feel free to chat with some of them. Perhaps if you feel there is a need, please start up a French speaking thread (we can also set up a sub-forum if it becomes popular).

It’s good that your liver seems to be healthy with a low fibroscan score and great that you are taking measures to improve your health generally by quitting smoking. Sorry to hear that you have been under so much stress regarding your condition, but I hope you can see from this forum, there are many people living close to normal lives with Hep B.

Regarding “grey zone” patients as you have mentioned, this is still under investigation in the field. Some studies have come out recently showing that in some of these grey zone patients, liver inflammation is occurring. This is not settled yet, and it depends on your choice whether you want to start treatment or not. It is worthwhile taking some time to talk to your doctor about this choice with the most up to date evidence.

It’s great that you already have an appointment lined up with a GI to discuss this.

Hope this helps,
Thomas

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Thx all for the prompt responses.

Honestly, the emotions i feel are hard to explain. I guess is not knowing what will happen and why …?

I saw the GI 2 days a go and it was wierd … first time when saw the 29000 ui ml adn … was is not that much and make another blood test in 3 months …
I was ok with the next result in my mind … and he told we need ttt not teling me what ttt … and not any other explaining.

For me le fallows up on the blood test was a litle traumatic at 14 yers old when i go at 6 in the morning 5 km in the bus … and i think thas why i block until 5 months ago … when i thought i had some spiders web on the lower ribs side. Actuly i thinks now is some kind of telegectasis from weight fluctuation…

I kind of lost my mind about the veins, and i promted to make a blood test. Very hard and scared but kind of proud of my courage.

In that periode i try to find more info that i alredy knew … ( in 2016 i also make some reserch but only to see if i can practice … with my load) i dit serch for what could happen because i alredy knew the chances i got developing something bad and the limitation of the traitement. I was anxious about my practice more that the outcome of the results…

After many studies and literature and guidlinnes with a lot of questions i make atay with out answer ( but my brain did not serching for answer at 3 o clock in the morning) hoping the fiind testimony of people with this illnes and conecting with them, ( and mostly to learn from others because statistics are juat numbers on the papers without feelings and the methods are not complet) but i did not found … i dont know how i fund u guys but im very happy i dit.

I am always scared of something :slight_smile: i am kind of used with the feeling but i always find hope and move on.

I have a lot more to share and to read on this forum.

A très bientôt.

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6

Welcome to the forum and thanks for sharing your story. We do have some French speakers on the forum (@mariondelphin, @e.verrier, @julie.lucifora, @Gilbert), so feel free to chat with some of them. Perhaps if you feel there is a need, please start up a French speaking thread (we can also set up a sub-forum if it becomes popular).

Thx for the recomandation, i will gladly try to speek with them and see if we can make a french topic.

I like to practice my English:)

And to any on feel free to mesage me to share your story or day to day strugles maybe i can give some psychological suport.

I wish u all a good day !

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Hi Alex,

Merci d’avoir partage ton histoire, j’ai vraiment ete touchee par tes mots. Je suis chercheuse travaillant sur HBV, je travaille beaucoup avec des echantillons de patients, donc ait une certaine comprehension du diagnostique et des different marqueurs de la maladie, mais ne suit pas medecin donc mes connaissances sont tout de meme limitee. Etant fumeuse moi meme, je suis fiere de tes efforts!! Continue sur cette voie, c’est important. Au niveau du traitement, en effet les guidelines sont parfois un peu complexes, mais l’OMS est censee les etendre tres prochainement afin de traiter plus de patients. N’hesite pas a poser des questions a ton medecin, il/elle devrait etre en mesure de te repondre et de t’apporter toutes les informations necessaire afin que tu prennes une decision, bien evidemment, la communaute presente ici est aussi la pour aider.

Si jamais tu ne connais pas deja, il y a des podcasts de patients qui temoignent de leur experience:

N’hesite pas a demander si il y a un programme de peer support pour HBV dans ta region ou ville, ils sont souvent assez rare mais ca vaut le coup de demander!

(je suis francaise mais je vis au UK depuis un an et demi, donc n’hesite pas a repondre en francais ou en anglais si tu veux pratiquer ton anglais).

Bonne journee,
Marion

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