hepatic encephalopathy?

Is that the same as brain fog? If so, it's the worst part of having this dreadful disease.

pronounced
n -cef-a -LOP-athy lol hard to say!! terrible to have !!

Here ya go, Kathy:

http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm

I posted this yesterday on one of TH's threads (Kicking Dust in AZ or something). Her doc says no to treating it (high ammonia = HE) until her Harvoni tx is over.

That was my PCP, he always tests ammonia..well today went to NP at gastro...she said stop with the ammonia it isnt of any value..(most docs don't test it) .it has been tested with or without cirohsis and it isn't consistent to prove anything with HCV or other diseases...She said YOU DO NOT HAVE HE...I said how do you know ...She said i treat the patient not the disaese..and by looiking at you , you do not have HE...????OK?? what da...so I said then explain me coming to my apt one hour late and getting dressed at 9pm at night to go to my Dr appt....she said I had sleep apnea sp? OH I tell ya I really need a good DOC...she said all her hep patients come in with ALL these symptoms and one girl was so dizzy she stumbles and fell in hall..NP said what happen she said it is my hep c and NP said It is not the Hep C...she needs to go to emergency room...WHAT DA...she said everything that happens my patients blame it on hepc...ahhhh yeah...cause I have hep C ...she said you can't have HE , then she showed my my labs and said .LOOK all your levels are normal how can you have HE when your liver is working fine...well, she does have a point there ..but HE is about the ammonia in blood and body but if liver IS working right , then there should be no ammonia but there are toxins with HEPC...oh now I am really confused...on top of HE...lol...I just know WE ALL or most of us have brain fog....these docs just don't know about this diseae yet...it may take years for them to catch on ...they need to catch it alright..then I said- my PCP called Dr Boyer (the real gastro Dr we never see in office ) and asked him about ammonia levels and Hepc for me and he said NOT TO TREAT ammonia yet as it is not Harvoni friendly and meds cause vomiting nausea etc..wait till after TX..my NP said YOUR PCP did not call Dr Boyer I can guarantee that...OMG whos on first... she said WE DO NOT TREAT AMMONIA OR EVEN GET TESTS FOR IT IT IS NOT A TRUE READING which I have heard you have to take it arterial not intrevenious...but the fact that mine by IV went from 11 to 260 whether accuate or not shows it goes up alllll the time...I give up I am UNDIE and will wait till after TX to deal...hopefully, I have heard that the fog lifts and clarity comes...OH i pray so

There are 2 types of medicine that are used most often to treat hepatic encephalopathy: Lactulose and Xifaxan.

Lactulose being an older drug it is a dirt cheap laxative.
Strapping yourself to the crapper for 2 or 3 days remains the most cost effective way of seeing if your ammonia levels have anything at all to do with perceived brain fog.

If you are losing whole blocks of time, or have the sensation of waking from a dream state while trying to perform a task that makes no sense, or if those close to you watch you trying to clean drapes with say...a carrot, that is HE.

To many stressors to blame for brain fog or cognitive liability.

Likewise, testing for accurate ammonia levels as they effect the brain is a gamble. It's a individual metabolism/ timing issue.

Most pro's wont want to test you unless it is obvious. And then the results are moot anyway.
After a weekend on the toilet, if you feel smarter and acutely aware of your surroundings, you should get a refill on the lactulose or xifaxan and watch your protein intake.

I know this sounds like a rednecks guide to surviving HE...
I changed some words, but the pertinents came from the state university liver transplant people here in WA.

Observation: Those who can function in a near comatose state or have past experience in that area,
rarely discern the very gentle descent into a HE madness episode.

thanks Lev for that confirmation...doc said you don't have it...I am looking at you and YOU DONT HAVE IT...
hoping this too shall pass with Harvoni's battle

Actually, there's three types with the third one called Rifaximin.
Other than that, Levicah is spot on with everything else posted. And when the doctors say they can't treat while on treatment, they're referring to using xifaxan or Rifaximin. You can treat HE otherwise known as "Portosystemic Encephalopathy" with Lactulose but do you really wnat to go through it for any long period of time? Take it from me who used to guzzle gallons a week of the stuff. Levicah is absolutely correct and the only thing that saved me during that period of time was the4 depends I wore in order to prevent accidental staining of my clothes that had the misfortune of going through that awful period of time with me too.

It is only if the patient slips into hepatic coma when the choice has to be made whether or not to stop the Harvoni instead in order to save the patient's life but, if you're just going through minimal hepatic encephalopathy there's really not a problem to avoid treating it especially when on Harvoni tx also. Finally, when I was on Interferon/riba combo prior to my transplant, there wasn't an issue in treating the HE because at that time the only treatment available was lactulose. so, If anyone feels that they have lousy luck while being treated for HE and they have to stop while on Harvoni, just remember this. Treatment for HE was so much worse years ago. Hang in there and enjoy the show *{] ;>)~

Hey! Who took off my hat? Must have been the wind. *{] ;>)~

I almost forgot! The most important thing to avoid if you have HE is any protein rich foods especially meats and if I remember correctly, some legumes that are really high in protein because during the digestive process that's not working correctly, the amount of residual ammonia that tends to stay in your intestines and then migrates back into your blood stream will increase with a protein rich diet.

So avoid any type of protein in your diet in order to minimize the amount of ammonia building up in your system. I know this from first hand experience.

So how do you live without protein...don't eat protein you are saying ? wow that is it I eat blk bean and brown rice almost every day in burrito or just a bowl for protein... I don't eat meat and have stopped eating seeds , nuts, and cranberrie mix...

Xifaxin is the same drug as .rifaximin.

Xifaxan 550 mg (Rifaximin) | Overt Hepatic Encephalopathy Treatment
www.xifaxan550.com/
Xifaxan 550 mg (rifaximin) can help improve the lives of hepatic encephalopathy patients. Learn how Xifaxan 550 mg can help.

Avoid animal protein.

You're right Tulsa about the 2 drugs that I meant to say have two different names instead of types. I guess I was getting really tired when I posted that so good catch. Btw, how are you these days?

I hope things are getting better for you dear. oh I almost forgot, you did go through that NIH trial for NASH didn't you? How did that turn out?

Here's an interesting study on the treatment of HE by comparing various forms of treatment including Xifaxin and Lactulose as well as other types of treatments including neomycin and various pre and probiotics too,

In this link located on the right side of the page are more articles covering many different aspects in the treatment of HE as well as discussing how to treat the various types of HE from a variety of studies since 1998 and earlier to 2013 which is not too long ago.
Enjoy the reading.