@techi @chrissey @peder417 @kanaazpereira
Hi all, somehow when these were originally posted they got by me without my noticing. I apologize for that.
Have any of you actually been diagnosed as having liver problems? I had non-alcoholic cirrhosis which is a cause of ammonia, and HE (hepatic encephalopathy) episodes and was on lactulose for them. My high ammonia levels were discovered and that led to tests which diagnosed cirrhosis. After cirrhosis was diagnosed I went to a hepatologist. She then prescribed xifaxan for the HE episodes, and to discontinue lactulose. The xifaxan warded off the HE episodes for almost a year. When they resumed I had to start taking lactulose again along with the xifaxan.
If you have not been diagnosed with liver problems, to what are your doctors attributing the confusion/dizziness/falling?

I don't know if high ammonia problems can be caused by conditions other than liver problems, but if not I think you should definitely be seeing a hepatologist. Lisa, when I was seeing the hepatologist my appointments were every three months. If I recall correctly, as my condition worsened I did see her more frequently. Of course if I had a problem I could call and speak to her or her NP and see one of them.

Chrissey, I presume that xifaxan is the drug you referred to as being expensive but helpful. It is both of those but I have heard that the drug company has a program to help patients who do not have the means to afford the drug. Your hepatologist should know more about that and may even be able to give you a form to submit to the company.

Kanaaz, I didn't know that "Lactulose is prescribed to push food through the bowels more quickly", I thought it helped to dissipate the ammonia but those two things are probably not mutually exclusive and I find your explanation to be more understandable, knowing personally the effect of lactulose.

If I can answer any questions I would be happy to help. Again, I apologize for jumping in here so late. I know the agony you all must be going through. I went a very long time with no diagnosis and that too was agonizing, not knowing. Since the ammonia affects your brain I was sent to a neurologist because my doctor thought my problem was neurological. The neurologist was the one who actually first suggested liver problems and had them do an ammonia test on me, leading to a diagnosis that was metabolic, not neurologic.
JK