Story so far

[aberdeen577]

Hello Everyone,
Right now my stats are :
E antigen negarive
S antigen positive
qHBsAg 16.40 IU/ML
anti HBs <10.00 IU/ML
ALT 29
AST 24
GGT 21
ALP 37
Calcium 2.27 mmol/L
adjusted calcium 2.27 mmol/L

I am currently taking
TDF 1x245mg tablet/day (since September 2011)
Simvastatin 1x20mg tablet per day
Vitamin D3 1x5000IU tablet per day
Blueberry extract 3x60mg tablets per day
Selenium tablet (1) per day

I met with my consultant today and I am so depressed now and disappointed. He will not put me on peginf.because:
-my age
-I have severe fibrosis saying inf can cause liver damage and decompensation
-caucasion
-he has no clinical evidence that it will work with someone so low as 16IU. Says surface antigen needs to be around 500IU/ML for it to work
-it is dangerous to take
-my ALT and AST are too normal; would prefer them elevated
I feel very low now and cannot understand why he cant at least try it for a few months at least.

My question to my learned friends is what can I do now?  I would like to self medicate other oral drugs as a first line to seroconversion before inf. Stef, can you suggest a drug regime that I could look at taking? Inf looks to be a little way off for me right now. I am in N Ireland and I do not have any choice of where to go next.
Thank you.

[stef2011]

the doses are very different person to person according to vitamin d receptors genetics and probably the state of disease or interference from hbv

for example my vit d dose to get pth less than 20pg/ml is 150.000iu daily but to reach 150ng/ml, which is not enough to lower my pth, 50.000iu is enough

my sister's can get vitd25oh 150ng/ml by 20.000iu daily but also for her pth stays at about 40pg/ml, if she takes less vit d3 pth goes out of normal range to more than 72pg/ml (pth range 10-72pg/ml)

so anyone needs to try different doses and check

[The_PS]

Yes, only 1.000 iu/ml.

I usually go outside to soak up the sunlight at least 20 minutes a day as well.

[melcul]

with just 1.000 IU ? not 10.000 ? that's a preety good response on such a low dose

[The_PS]

I am taking just 1000 IU, bought it from Superdrug. My vitD3 increased from 29.3 to 99 ng/ml within 2 months.

HBV DNA went down from 4000 iu/ml to 1600 iu/ml.

[stef2011]

it i different person to person, you have to slowly increase until u get it

[aberdeen577]

Thanks, will do. To hit 150ng/ml how much D3 in IU do I need to take do you think?

[stef2011]

So first thing increase vitd25oh, this will bring down pth and maybe this will be enough to increase hbsab.follow the no dairies diet, no nuts, 2.5l of water daily and keep goleic gcmaf possibly nebulized weekly

[stef2011]

This is what you might do:
hbv vaccine plus aldara on the area of injection plus zadaxin this may help rise hbsab

As regards pth if correct it is out of range, max norm range is about 72pg/ml, this suppresses immune system, all pth values more than 20pg/ml might not be able to suppress th17 which is correlated to weaker hbv responses and autoimmunity.try to rise vitd25oh to 150ng/ml and see if pth goes down

For example when my vitd25oh is less than 100ng/ml i have pth over 106pg/ml and no response on hbsag.

[aberdeen577]

Nagalase not checked yet because there in no one now in N Ireland who can do this. I think Dublin is a possibility but I am going to have to go there to get it done. Will organise soon.

[aberdeen577]

I got my results in the post yesterday. My fibroscan was 10.5, up from 6.5 the previous year. I asked them to do it again and they did a few days later, it was 7.2 the second time. The prof told me that the nurse was probably hitting a bad localised piece of liver hence the different readings. But I am not sure on this.
Surface antigen NOT detected
Surface antibody <10IU therefore non immune
PTH 4.0 pmol/L equal to 84 pg/mL ( if I worked it out correctly)
Vit D3 is 293 equal to 117 ng/ml
AST is 25
ALP is 47
ALT is 24 Bilruben is 16.8
GGT is 18
Calcium is 2.40
Creatinine is 84

[sundaram340]

what is ur present status?

[aberdeen577]

Thanks Stef, yes I need to get nagalase checked again. It was originally 2.2 before I started stabilised vit D.

[stef2011]

i would also double check for tumors and other possible chronic infections, just to stay on the very safe side since nagalase 1.8 is quite high and also common to cancers

my last nagalase test in august 2013 was 1.3nmol/min/mg (down from 6.7 aprl 2011)

[stef2011]

as i thought nagalase is still detectable probably produced by cccdna in infected cells, this may also be the reason some are still exposed to liver cancer after hbv clearance.the remaining cccdna probably keeps producing nagalase which keeps macrophages inactivated

anyway if we see you develop hbsab with nagalase normal, which is less than 0.6, we have a point to support this guess

they have just developed a suppository formulation for goleic gcmaf to reach the liver or you may also try the nebuliser, i think the drops are too weak to lower nagalase
another option is hbv vaccine

[aberdeen577]

Dear Friends,
I had my bloods done just a few weeks back and here are the results..
FIBROSCAN    E   (kPa) 11.70 8.70 -- -- 6.50 -- --
HBsAg  (IU/ml) (cccDNA)-- 12.80 16.40 -- 3.10 -- 0.47-- UND
HBsAb  (mIU/ml) -- <10 <10 -- <10 <10 <10
HBV DNA -- UND --UND--UND -- --
Alpha-feto Protein (0 - 6 KIU/L) -- -- -- 1.50 -- -- --
NAGALASE (0.32-0.95U) -- -- -- 2.20 -- 1.80 --
My surface antigen is not detected now but my antibody is still not registering. I continue to take 10,000 D3 per day with a current reading of 83.3ng/l for vitD.I also take 4 drops sublingually of goleic gcmaf two times per week. I hope now to see my antibodies begin to rise and hopefully I will finally win the fight.

[Jeff912000]

Do what you can.  Yes. stress also causes high BP but it still should not be so high.

Do what you can.  

I meant to say all these things lower BP in an additive fashion not addictive.  What ever these things you can do will help lower bp.

[aberdeen577]

Thank you, I will do this for sure. Right now my Mam is very ill and is going to leave us soon. This is not helping I am sure.

[Jeff912000]

You must lower blood pressure.  Otherwise you will get a stroke before you died of cirrhosis or liver cancer.
monitor BP daily.

Stop all supplements except for TNF.  TNF could also cause high BP  but you need it.  

sleep 8 hours a day.
execrcise everday to lower bp. run 5km a day if needed.  
eat whole grain brown rice.  The red coat is antihypertensive.  i take it every day.  
Eat very very little meat.  Eat only fish and a little chicken.
eat less salt.
lose more weight.  

do not drink alcohol
All these things lower BP in an addictive fashion.



LAstly take ACE receptor blocker only if these steps fail.    

[stef2011]

Try naturzl ways to lower bp first, im not expert on it but it should be due to inflammed and hardened veins but who knows.gcmaf should not be the cause of it at all nor vit d

changes of nagalase are slow, from 6 to 12 months to make it normal when low, years when high like mine that was around 7
lowering also depends on the source of it and immune system able to suppress that

[joc2011]

Your increase might be the result of all the immune reactivation and clearance. I had that too, had very high BP in the past but mines down to normal again. Liquid COQ-10 and Hybiscus tea definitely did the magic. You should try this.

[aberdeen577]

Just got nagalase test result. It has gone down from 2.2 to 1.8 from beginning november to end january.Unfortunately I vouldnt change last order to stab vit D, goliec had been sent but I will go back to stab vit D next time. i guess I will have to continue for longer than I thought. Downward movement has been relatively small.

Also, i had been with my GP to get prescription for more simvastatin and on checking my bp he found it to be 174 over 101. Now my bp was always pretty normal up to this so I am wondering would the gcmaf be causing this. I am not on any meds yet for hypertension, is this classed as high?

[aberdeen577]

Thank you, I am praying that it will come to zero and then the anti body will begin to go up.

[aberdeen577]

Agreed Stef. However my inf 6 month treatment was in 2000. They stopped it because they told me it was not going got work. When I think back about this how could they say that? They never did a surface antigen test so how could they know if it was working or not. In any case I did not start TDF until 11 years later. I am really hoping that my nagalase will be well reduced now and, if it is, then we can say that my immune response must be stronger.

[stef2011]

I did have 6 months of alpha interferon ( 3 injections per week) back in 2000 and this may have helped lower sag in the first place?

probable, most of hbsag decrease is in the first 6 months if any response is achieved and the lowering goes on after pegintf stop especially if you started tdf after that