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1738923 tn?1327326669

This disease is starting to consume me...

Hello everyone

I am quite active on the boards lately and trying to make a contribution by answering here and sharing my bloodwork and stats. Even sharing the drug costs of meds and tests here in my country (Philippines) But I think Im starting to get consumed by this disease and it's affecting my life, my mental health, and my relationship with my GF.

Now that based on some online materials, I am what they call HBEAG-negative high-replicative meaning I am what they call "immune escape" phase. Everyday I'm having a hard time sleeping thinking of what the future may hold for me, I am scared that anytime my GF may get infected too (she's under the vaccine series), I also am scared that she'd leave me anytime... I'm scared that I may die soon... I'm scared to even go to the doctor, what if the doctor says for me to get into antivirals? I know they're expensive, where will I get the money? I'm starting to get scared that I may die alone with no one beside my side... That I may die w/o even having started a family.

I'm starting to take pity on myself, thinking that I am very unlucky and the world is cruel.Thinking what did I do to deserve all this? I'm starting to lose it. I am losing sleep already and I'm starting to hallucinate and hear things.

My GF is currently out of the country and I dont know if I should tell her what im going through or just endure this.

I know I have a valid reason to be scared but my mental health is deteriorating thanks to my anxieties and worrying of my disease. And I can't disclose this to my closest friends because they may distance themselves from me.

to me fellow HEPB carriers

1. How do you keep positive?
2. How do you keep a healthy mental state?
3. Are my worries valid? Or exaggerated?
4. What are my next course(s) of action?
5. How can I lower my HBVDNA count?
6. How can I "prolong" my life?

Thanks in advance

Special mention to Stefano and Enolia. You guys are great and very helpful and your presence in the boards are very encouraging :)

24 Responses
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Avatar universal
i strongly recommend you tell your family about this and ask all of them to do a blood test, the early the better.
Helpful - 0
Avatar universal
if your gf leaves you, she doesn't love you.  when most girls fall in in love with her man, she usually doesn't care about a thing.
if someone doesn't want you anymore; you don't want her too.
wish you the best.
do some yoga, go to church.
Helpful - 0
Avatar universal
I am new to this blog and i am also a medical doctor .I moved to the United States from my country in Africa. I was diagnosed with Hep B here in America. The most depressing thing is that im worried whther i ould be able to go in for residency here. My doctors assure me that wont be a problem but i dont know what to do.
I have a girl i think i love and i told her yday that i have hep B shes s nurse so shes immune. I worry that i shudnt have even though she doesnt seem to have changed to me. Im worried i can \t tell my parents(they have their own health issues and my mum would just breakdown), my sister is preparing for her marriage and my other brothers arent just mature enough to deal with this.
My best friend, i often have heard her express apathy towards HIV pateints i worry if she would still love me the way she does. The girl i like is a phd student and is busy ,i worry if i souldnt have told her.
I feel alone, even though i have friends, i feel weak evn though i know im strong, the words i used to say to comfort my patienys cannot comfort me. I ask God, ''i know i havent been perfect, i have drank alcohol, i have had girlfriends, not more than most, so why me?''I will tell my parents to get tested and siblings , though i dont know how.
Some days are good, some are bad...some i just want to lie down all day and do nothing.I feel like all the hope i have has been snuffed out.
My doctors dont seem to care, i wonder if i showed my patients the same attention when they were sick ''did they feel i cared...did they feel i did not treat their condition with the seriousness it deserves''
There is a saying where i come from,'' it is to him that has misfortune that feels it the most'' .That statement is true.
Helpful - 0
1738923 tn?1327326669
Thank you JT (ill be calling you JT from now on :D )

Yes, I will try to think positive now and try to accept it. Though it is very challenging to think positive when you have a big mountain of a problem in front of you. It is easy spiral down into depression and self-pity but like you said there is no one to help me but only myself... If I lose to depression and anxiety then the battle is over and I will be just plain alive than living. I will just be a shell of my former self that is empty to my core.

I am just scared and anxious of this disease. I also dont want to be a burden to her in the future and I don't want to make her life miserable when the time comes. If she leaves me because of this disease then that is something that I will simply have to accept. Her happiness is also important to me and it will be unfair if I force her to stay with me and the trade-off is her happiness and fulfillment in life. I will leave the decision to her if she wants to stay. I hope that I find a way to survive and keep on living if that happens.

I am also thinking of creating a local support group here in the Philippines that can give personal heart-to-heart talks with fellow HEPB people, to talk abt the latest developments,discuss about hoax-cures, and talk about how to take care of yourself but utmost privacy and secrecy will be required so people wont disclose their identities and personal info.
Helpful - 0
1772456 tn?1314123096
This is almost similar to my brother and his wife then. Obviously it is because mis-understanding of the infections of HBV. They are married now, his wife is still immune and the 2 kids have been vaccinated within 24 hours after birth and they are immune now.

Try to sell the idea / educate about the transmission of HBV.
Because if the (future) parent is ignorant about HBV, there is bigger chance that the kids will be infected with HBV at later stage in life.

My opinion is that there is now way to avoid HBV, the options is either to get vaccinated or to treat it under control.

One thing that usually help me in any depressing situation is the following principle:
Whatever the situation / event, it will only have a meaning only if we have given it a meaning.
Therefore we always have a choice of what meaning we are going to give to any situation.

For example: situation - infected by HBV
you can either :
a. Take it as a punishment from God for your acts. Why me ?
b. A good reminder to better treat your body so you can live a better life in the future.

When we are in a breakup or someone left us. It is easy to feel victimized. DONT. It is normal to get sad every once and a while. We all are human. But at some point we have to get up and stand tall.

One thing I have learnt, is that any girl (or any person) will not be attracted to someone that is depressing. We human tend to look for positive energy and attracted to happy people. That is why we find smiling people more attractive.
When we are in emotional state, we tend to make unwise decision.

We'll never know whether current girlfriend is the best for us, or the next one could be even better. Whatever that we want to achive/win back, try to do our best. If we fail, at least we tried rather than just giving up. Rather than looking back and regret that we should have done something to get it.

If i recall correctly, there was a show in National Geographic that studies human behaviour of mating. The studies illustrate something like this:
Man seek for women that have fertile characteristics such as big breasts, hour-glass shape body. It is primitive instinct of the men to seek women that has better chance to carry his offspring.
Women, during fertile period instinctively look for men that have strong survival gene as characterize by strong body and muscle and strong jaw line. However women when are not mating-mode, are seeking men who are likely to support her offsprings. This could explain why women prefer financially stable man.

My point is that do not blame our girlfriends personally for not taking us having HBV so well. It is normal and probably part of women survival insting.

Whenever you feel sad or down: run or sing, it'll help.
Please dont sing broken heart song. It does not help =). I tried it before, and it makes me feel victimized. The second time I was broken hearted, i tried different kind of songs and it helps.
Depression is worse than HBV as it can lead to several critical physical illness.

I wish you all the best pinoyHBVDNA.

If you have time reading, I would recommend this book. It helped me:
How to Get Your Lover Back
http://www.******.***/How-Get-Your-Lover-Back/dp/0440500893/ref=sr_1_1?ie=UTF8&qid=1318771654&sr=8-1
Helpful - 0
1738923 tn?1327326669
@spike
honestly, all i want is my GF to stay with and marry me and have a family and be with me till my end of days. I know the meds are expensive so I dont know how will she react to the cost of meds... I dont even know if I should tell her or not regarding the cost of medicine. If I tell her and if she leaves me because of a financial-uncertain future and will opt for another man where she will have a "brighter" one then I guess I will just have to accept that... I guess she doesnt really love me that much if that happens...

Sometimes I wish that I didnt know that I have this disease so I dont have to undergo such tremendous levels of anxiety, depression, and self-pity... I guess it's better for me to simply die getting surprised that I have this disease rather than constantly monitoring it and getting worried each and everytime the values gets worse. Not a day passes that I do not think about of this disease.

sorry for being negative and pessimistic, but it's just a burden having this disease... I know life is what you make out of it and we should be living life to the fullest but how will you do that I the most important person(s) in your life is in the brink of leaving you because of this disease? Having this disease is tough, being dumped because of this will be hell...

I hope my GF is as stupid as your GF and decides to stay with me.

I guess I will just have to trust her and just pray for the best...

Helpful - 0
Avatar universal
Hey PinoyHBVDNA  I'm about to cry with your post maybe because i feel what you feel. For me that feeling is the worst symptom or maybe effect of having hepaB.

Its freaking the hell out of me! its easy to say that be positive, but that unexplainable feeling is always there (self pity, lost of confidence, undesirable thoughts).

But there are ways to lessen this sadness. Before i know that i have hepaB i have friends, And now i know that i have hepaB i have now my true friends! True Friends that always there to cheer me up! That when they having a drinking session they want you there even though that you can't drink like the old days,they want you there they want your presence. The feeling that you are important to them and they care about you.

And also maybe I'm so lucky of having a stupid girlfriend. Stupid because when i told her that i want to break up with her because i have this hepaB and i don't want to transmit the virus to her she said without thinking that she don't care and its better to her to have the virus than loosing me (what a stupid girl) and instead of breaking up with me she search for a cure and she's the one who introduce me in this website. Shes very supportive a big thank you to her for also cheering me up!

And of course your family you can find strength on them!

I hope my story can help you a bit to lessen what are you feeling right now. GO TO CHURCH there you can find the answer to most of your questions! "life is what you make it" :)
Helpful - 0
1738923 tn?1327326669
immobilus

im assuming unprotected sex means "unprotected penetrative sex" am i correct??
Helpful - 0
Avatar universal
P.S. I don't have a recent hepatitis panel, but when I first had a PCR done my viral load was 10,000,000 back in 2007. I had the PCR test done again last year and it was down to 6,000,000. I wonder why mine is so much higher than everyone else's.
Helpful - 0
Avatar universal
Pinoy, I contracted the virus through having unprotected sex ... But I also found out I had it while trying to donate blood. Interesting...
Helpful - 0
1738923 tn?1327326669
i guess she's now starting to doubt if i am "WORTH" it...
Helpful - 0
1738923 tn?1327326669
hello everyone

my GF and I just had a talk and now she's having thoughts of breaking up with me... She's currently in SG and she doesnt know if she still wants me. She said that Ive put her in a dangerous situation. She doesnt know if she still wants to stay.

I know she and her ex are still talking... Maybe she's thinking of choosing a "healthier" man...

Haiz... Life is funny...
Helpful - 0
Avatar universal
JoieTan pretty much summed it up. don't give up ... there is hope :)

personally i just pray a lot, i'm in the same boat as you are. i'm worried for myself, my family & my future. this disease is very expensive but i pray that most of us will get well from this.

i've been tying cheaper alternatives like coconut oil, but i don't know if they would work. sana :P
Helpful - 0
Avatar universal
you can get alinia from India - Nizonide (Lupin) and Nitarid (Cipla, i guess).  Please find genuine online pharmacies to order the same.
Helpful - 0
1738923 tn?1327326669
@April

Thank you for your words of encouragement. Yes, I think I should start to be more religious now to ease my anxieties.And based on your results it seems that naturally you have "high" HBVDNA count like I am though my HBSAG QUANT value is much, much higher than yours. Mine s 6000 IU/ml.

@Stefano
Are high doses of D3 beneficial? :) ANd there's no Alinia here in the Philippines, i dont know where to get one.

@all
A personal question if you guys dont mind. Do you have family? Children? Etc? A partner in life? Are they supportive?
Helpful - 0
Avatar universal

by the way my sister gave up alinia, no response and increased vit d3 like you...she has decreased hbvdna to 88000iu/ml from millions in a couple of months

before this flare of hbvdna she had hbvdna stable for years at about 300000iu/ml, so both vit d and low choles might be helping on this
Helpful - 0
Avatar universal
I am hbeag- but my viral loads are always very high. I am 42 years old now. I have never been on tx until now. I know exactly how you feel. There's never a day passed by that I didn't think about this disease. Please see my results.

Results on 11.3.09

HBV DNA  446,574  copies/ml
Fibroscan -- 5.2 KPa
---------------------------------------------------------------------------------------------------
Results on 01.06.09

Alt  62 ( Ref. 9-52 u/l ) ---- High
Ast  43 ( Ref. 14-36 u/l ) ---- High
HBeAg  -------------------------Negative
Anti-HBe  0.77 ( Ref. < 1.2 )----Negative
-------------------------------------------------------------------------------------------------------
Results on 26.10.09

SGOT/AST-----53 u/l---- high-----15 - 41
SGPT/ALT-----54 u/l-----high-------0 - 44

HBV DNA   977,760  copies/ml

-------------------------------------------------------------------------------------------------------
Results on 4.1.2010

fibroscan ----- 3.7Kpa  

----------------------------------------------------------------------------------------------------
Results on (02-05-2011)


AFP 4.2 ng/ml------------ normal--- ( Ref. 0.0 - 9.0 )
ultrasound----normal
fibroscan----- 4.2 kpa

HbeAg Negative

hbv dan 1,775,100  copies/ml  (Test methodology by COBAS Ampliprep/COBAS TaqMan HBV Test)
Log equivalence 6.25 log
Viral Load (HBV DNA) =  305,000 iu/ml , Log equivalence = 5.48
----------------------------------------------------------------------------------------------------------
Results on (26-09-2011) are as follows:

Fibroscan -- 4.6 kpa
HBV DNA --  55,814 copies/ml
HBsAg (Quantitative) --  2906.99 IU/ml (cut off= 0.05 IU/ml)
25OH Vitamin D3 --  40.8 ug/l

Mostly because of this I become more religious, I am a buddhist. Whatever your religion is, have faith and have hope. When I am scared I say some prayers. It helps me. May be you should try.
You should make necessary blood works and tests to watch yourself.
The most important thing is your lifestyle.
No alcohol at all, no fried food, eat lots of veggies including steam cabbage, onion, Avocado, fruit juices. Do some exercise like Joie Tan said.
My viral count was low in my last result. I think it's because of vit d3 and heptec that I am taking

Don't worry about your GF, once she is vaccinated she will not be infected with hep b anymore.












Helpful - 0
1738923 tn?1327326669
vertical transmission = getting it from birth :)

Joie
Thanks for the insight. I am just so scared and anxious of this disease. You words have a strengthening effect on me :)
Helpful - 0
1772456 tn?1314123096
1. One thing that helps is that people are more likely to die from fatty liver than hepatitis B.
2. To keep mental health, i would suggest to keep your body fit. Try exercise, that helps. After exercise i usually feel good. Probably its because of the hormon released during exercise. Remember that minds affect the body and vice versa.
3. It is better to be cautious than ignorant.
4. I would focus on improving my diet. Improving on what you eat for a year would improve your health.
5. So far I know to suppress HBV DNA is via antiviral or interferon
6. May be a better way is to not to think of "how long" of our life but "how useful" is our life going to be.

I know it sounds cliche. We all have a choice. We can either spend one day trying to be happy or trying to be miserable. Focus on the good thing.

I am thankful to have hepatitis B, because it reminds me to take care of my body, my diet and my health. Probably I will live longer compared to anyone that is ignorant.

Stay away from fried food.
Old people that I know (80+) have very little appetite for fried food

cheers !
joie
Helpful - 0
Avatar universal
What does it mean when you say vertical transmission?

I take Ginseng, essentiale forte before, about 7, 6 years ago, but since it did not change anything I stopped, then just recently about 6 months ago I tried Ginseng again not because I believed it can cure me but because I know ginseng is an important ingredients of many food supplement, and might help boosting my immune system.
Helpful - 0
1738923 tn?1327326669
And to add, if i dont take meds/ antivirals/ nucs I may die soon because of this disease, so Im stuck between a rock and a hard place.
Helpful - 0
1738923 tn?1327326669
Nakakabaliw itong sakit na ito

(let's talk in English kabayan)

I got it via vertical transmission and around a decade ago, I tried donating blood and was screened. After that our whole family got tested and my mom has it and all my siblings too.

My last HBVDNA count was 180000 iu/ ml / 1000000 copies/ml, which is clinicially significant.

What meds did u take? And when did you stop? I'm afraid of taking NUCS/ antivirals because they say you have to take it for a lifetime which I dont have the luxury to do because I dont have the money to sustain a long treatment.

I'm also worried about my GF. Im also scared that she may leave me once shet gets to know my bloodwork and the cost of medicine(s).

Haiz...
Helpful - 0
Avatar universal
Hi PinoyHBVDNA,

Kabayan, Since when did you learned about your hepa? Kasi ganyan din ako 7 years ago, nung una kong nalaman na may hepa ako, paalis na sana ako non papuntang Taiwan, mahirap kasi buong asa ko makaka alis na ko, lahat ng advise sa kin ginawa ko, kung ano ano sinubukan ko pero hanggang ngayon may hepa ako.

Mahal ang mga gamot kaya hininto ko rin, sa ngayon lagi ko na lang pinapa check up yung HBsAg count ko kasi nga mahal pag complete profile. Nung una ko nalaman to 3500+ ang count ko pero ngayon 200+ na lang.

Di ako nawawalan ng pag-asa.
Helpful - 0
1738923 tn?1327326669
Any member here who is also HBEAG- NEG with "HIGH" HBVDNA count?

How are you and what are you doing?
Helpful - 0
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