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genotype1b and encephalopathy

Hi - I am new to this site   I am geno1b and have had this since the 70's from car accident tranfusions but only in 2001 was I dx'd. I suffer from constant enceph and even though my ammonia levels are ok the docs say I probably have developed some amt of damage due to tx's ( 2X non responder) and meds.  I take xifaxin every night and doesn't help.  Have any of you expierenced this problem?  I am stage 4 cirrohosis.  By the time I was dx'd, I was already at stage 3.  It's been a hard row to hoe here as well.  I've been on Procrit, Neupogena, etc etc   thank you ahead of time for your response   lpw
4 Responses
Avatar universal
Hi,,,Sorry to hear that you have been a nonresponder so far and yes with your stage,,,you definitely need to clear the virus.  Since we are all just patients here and no drs,,,,we are just swapping stories and our own doctors advice,,,,Has your dr considered putting you on low maintenace on the tx.  There is others that are in your shoes also and hopefully they will be checking in with their answers.  Hang in there,,,lots have beat this at that stage!  Best Wishes to you!
91778 tn?1252558770
Hi there, I am a stage 4 also. I am female 42, geno 2, viral load 4 mil. I did combo and relapsed. I am going to see a new doctor on the 3rd. To see if I can treat again for a longer amount of time. If not I would think I need to be on maintance therapy. We don't have much choice at our stage. If you are not far enough along you can't get on the transplant list. But like honey11 said you should talk to your dr about maintance. You never know, the new drugs coming out might be the ticket for all of us. We just need to keep the damage at a minimum until then. Just never give up the hope.  
God Bless
Avatar universal
I'm @ end stage liver disease-same story as yours except my transfusion was in the 60's.  I was dx w/hep c 2b after my liver failed and I had a massive esphageal varicies rupture.

I was so sick for so long I don't know what is normal.  I do know that I can control the encephalopathy thru diet and cleansing teas.  A real Zen diet-whole and organic, very low protein,salt, fat and dairy.

I also control stress thru yoga and meditation.  walking the dogs.

Unlike you, I am a medical marijana user and do not use any other drugs.

I don't know how much damage is permanent.  I just try to avoid all high prion foods-I also have 'gout'-also caused by prions (mis shaped proteins).

I cl'd the virus in 2 wks, so I've had 4 years to improve my liver health and my general health.

It seems that the only thing to do @ this stage is to not stress the liver, be more mindful of diet and eliminate inflamation.

I also recognize that I have encephalopathy-clinical or sub clinical-and make detailed lists and remind my family that my 'scatter brain' is no act.

Try melotonin for sleep-see health food section.
Avatar universal
  What foods are high in prions??  I would really like to know because I want to avoid them!
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