Just sending you my best wishes.. I hope that you will get some replies from people who have knowledge of this, im sorry that I do not know myself xx take care , luv Kathleen :)

Hi Kathleen and best wishes back to you. I was wishing to IMPART some knowledge :-)

Peace

Thanks ... sorry I misunderstood what you meant x peace ...Kat

thanks pam,information is a good thing....

Goodmorning, I have been taking Xifaxan/refaximin for a number of months now. It is spendy, spendy, spendy, but I do like it. I hate Lactulose/Enulose. My Dr.'s actually have me on 3 meds for the enephalopathy. Lactulose, Xifaxan and Zinc Sulfate. My local GI Dr. pushes the lactulose and gets after me if I don't take it as she wants. But it doesn't agree with me. I experience side effects and feel terrible. My transplant Dr's say that as long as my ammonia level is lowering, I can just take the Xifaxan and Zinc Sulfate. And take the Lactulose every other day or as needed. They stated at my last visit that some people don't tolerate the lactulose as well.

I have been experiencing conflicting veiws in regards to what encephalopathy is. My local GI Dr and my transplant Dr. both state that I have it. I had to see a specialist (Interventional Radiologist) recently for stomach varices and his PA told me I don't have encephalopathy. Of course they made some comment to that effect on my records. I was recently denied SS Disability because they claimed that with medication I have recoverd from encephalopathy and even though I am on the transplant waiting list, I was not eligible for disability. Statements like the specialist (who is outside of the liver area) made, don't help. My transplant Dr's don't want me to drive or work. Catch 22. My ammonia level is still high. I may not be trying to pee under the kitchen sink or see dancing pink pigs on top of the TV anymore, but I'm still not back to normal. Would love to have you share what your Dr's have told you. Suzes.

Hi Suzes. I am so sorry to hear that your docs office isn't helping you with the SSDI process. It is HARD ENOUGH without them really being *in your court* and phrasing things the way they should be phrased so that SSDI doesn't question, question, question. It took me 17 months to complete the process. My first denial came while I was IN intensive care ON life support and it said to *get up and go back to work*. I would highly recommend that you get a lawyer if you don't already have one. Sadly the system seems to be designed to line the pockets of lawyers. The Blue Book can be found at: http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm and you generally need 2 of these symptoms but it sounds like you have them. Cirrhosis by biopsy and elevated ammonia levels SHOULD get you okayed for SSDI. You generally don't have elevated ammonia until you do have cirrhosis. It does help though, as you said, to have the docs office phrase it that way. If you find they aren't cooperative then start to develop your own paperwork ON the doc's chart. Everytime you go into the doc's office take a list of your symptoms and your daily routine and make SURE that it gets placed INTO your chart. Then it becomes a permanent record that SSDI can request copies of. Be sure to put things into it that *they* consider important. The fact that you are fatigued, that you don't shower every day, that you have some mental confusion (because of the ammonia levels), that you can't sit, stand or walk for long periods of time. There are many good articles on the Internet that have TIPS on how to get through the disability process. A couple of good links are: www.helpwithbenefits.com and http://www.hcvadvocate.org/hepatitis/hepC/gettingdb.html If you have other things going on too, like fibromyalgia, depression, diabetes, cryo, RA, hemachromatosis, etc., be sure that this is noted. I do think SSDI likes to label us as *mental* (depression) rather than base it on liver disease. Do whatever needs to be done and learn how to *play their game* It is so sad that most of us have worked all our lives and paid into the system and then they make it so difficult for us to collect when we need it the most. I have many stories about people who got theirs only days before they passed away, but I also have many stories of people who got theirs on the FIRST TRY because they got a lawyer, a doc who phrased things well, and they had good paperwork. Glad to hear the Rifaximin is working for you. I still just swig down the Lactulose and call it day. Even Kristalose is *out of my league* $$ wise. GOOD LUCK with your SSDI. If you want to write me privately at figment@nettally.com I will try to give you some more *tips*

Peace
Pam

Hi Pam, you mentioned in your post that your ammonia levels stay around 137. What is considered good levels? My brother is on lactulose but the hospital doesn't give us this info when we have to take him in. Depending on who's on duty they may or may not allow my sister or I in the room untill they have started the paracentisis and we don't know to ask what his ammonia level is. There is so much to learn, and this is the only place I have found any answers. If he begins to have problems with lactulose, what would his symptoms be? How would we know if he needs to try something else? Thanks again.

Hi Sue. Normal ammonia's are about 0 to 40 depending on the lab but as I mentioned in my previous post.....it is *just a number* and some people do fine with higher ammonia levels while others can go into coma's with lower numbers. It is more important to take into consideration the way a person is behaving, how their memory is, whether their speech is slurred, whether they are confused, falling asleep too easily, etc. than to rely on a number. A lot of *our* labs have numbers that can only be applied on an individual basis. For instance a normal Alpha Feta Protein (liver cancer test) might be normal in one person but have a high reading in another - but if the high reading is on a person who already has cirrhosis than that really is *normal* (but keep an *eye* on it in case it doubles or gets too high!) Some *normals* are just what is normal to the individual person. Hope that made sense.

There is a good article about Hepatic Encephalopathy at: http://www.hcvadvocate.org/hepatitis/hepC/hepatic_encephalopathy.html

Hi again Sue. Has your brother signed a release for you and your sister to receive copies of his medical records and tests? It not, he really should do that so you can ask questions like: *What is his ammonia?* and they would have to let you know. Paracentesis is a procedure to remove fluid that has accumulated in the abdominal cavity (peritoneal fluid), a condition called ascites/edema. It has nothing to do with ammonia. When we have too much ammonia in our livers it can get backed up into the brain and cause us to become confused and possibly go into a coma. Again, you can judge more by his actual behavior than by a number but if you and your sister are helping your brother with his HCV battle then you really should be able to access all the info you need from his Docs, Nurses, and the hospital.

I doubt anyone would ever have any problems arising from taking the Lactulose itself since it is simply a laxative. It binds to the ammonia in our system and is then passed out through our stools. Lactulose *assures us* that we have enough stools each day to rid our bodies of the ammonia (since the liver can no longer filter it out). Hope that helped a bit more. I realized I didn't read your question right the first time. Off to take some more Lactulose myself! LOL

Peace

I ve just be advised to give Xifaxan a try, it must be coded as "medically nessasery" in order to get it paid for. Your right about your interpretation of ammonia levels. There is nothing thats absolute on the subject to give a DX on enchepolophaty. I mean its like you said your levels hit 250 WOW! thats a record never heard them that high before, but then others go comatose at 100.....you know we are the only ones that can truley tell, and it goes by what we tell the Drs. If you dont mention it seems many Drs assume its not bothering you so EVERYBODY if it is a problem SPEAK UP:) at the Drs office.
bryano