I have been having experiencing encepelathopy the last few months I am currently taking four tablespoons of lacutose and two pills of xifican a day. The xifican has really helped my stomach issues however I still suffer from fogginess and am lathargic in the afternoons. Has anyone had any encepelathopy issues and some stories to share on things that help and don’t?
I've been wondering if my partner is dealing with HE. They have been doing ammonia tests to diagnose but my research tells me that is not very good for diagnosing because the ammonia doesn't show up in the blood until it is Overt HE and you don't want to wait for that to happen for obvious reasons.
How were you diagnosed? Do you have tremors? Tremors seem to be an issue lately for my partner, but it is not asterixis. The tremors are not just in the hands. Ammonia tests come back OK but there is disorientation and brain fog, lack of motivation etc... Lethargy is a constant issue.
In my research I found this iPad app that has been extensively tested and peer reviewed and can be applied for Covert HE testing if you are not color blind. I am adding the links to the app and to the researchers website.
you can download the above in transcript or the podcast with iTunes
above is the link to download the app
It seems there is not easy access to diagnosing Covert HE in the clinical setting and this app is showing good results. Diagnosis is very important as HE really effects the quality of life, can be a danger to someone who is driving with it (along with others on the road) and covert HE is likely to advance to "Overt" , which is serious. So, it is important to treat it, which is totally doable.
Good luck to you and thanks for posting this! I've needed someone to "talk" to concerning this.
I don't have tremors. Most of the day I am pretty good. There will be times in the afternoon when I am fatigued and I feel like it may be more mental than physical however it may be my job as well. Like I said I am taking lactuose and xifican and I feel the xifican has helped my stomach issues more than my mind but atleast something is getting better. I also started experimenting with essential oils. I am trying to Zendocrine (Liver Detox) oil to see if it does anything, but at times I just feel like I am throwing more things into my body that won't be beneficial.
So now, how were you diagnosed? My partner went to a neurologist recently and he did a bunch of cognitive , spacial and movement tests. Also a brain scan, so it seems like they are thorough.
Freddy, am very interested to see if the Zendocrine helped you at all - my father has recently been experiencing high ammonia levels causing HE - he is taking lactulose and they recently added Rifaximin - an antibiotic - which I think is the same as your xifican…did any of that make a difference - I am very into Doterra oils and wanted to see what might help him?
I don’t remember how the xifican made me feel because I was pretty foggy before my transplant two years ago. However I do know the lactulose really saved me mentally for a year before my transplant. I had pretty bad encephalopathy prior to taking it and it saved me until my transplant. In reading my previous posts I guess the xifican helped my stomach but I remember my head issues more than my gut issues. Let me know if you have any other questions. Liver issues are a long hard battle but with good support it can be beaten!
Freddy, thanks for the quick reply - my father is 82 and told he’s not a candidate for a transplant so really just trying to research and figure out what we can do to lessen the symptoms of his PSC - that’s why I was wondering about the Zendocrine …glad to hear lactulose and xifican had a positive impact
They really helped to clear my mind and make things somewhat tolerable. Sorry to hear about this I know the feeling all too well. But again with modern medicine the symptoms can be tolerable. But yes I was very fatigued in afternoons looking back on my posts.
Yes i have liver PBC/PSC and have to watch my ammonia levels. It can really incapacitate you. Stay strong, God bless you.
Hey there, I came across this thread and found it interesting as I am also on xifican for HE that has helped some. At my last appointment they wanted me to add lactulose. I found that drug to really affect me in a weird way. I think it was messing with my colitis and not in a good way. I may have to try it again though. I also have been using an essential oil juvaflex from young living. ( only put the oil on the bottom of the right foot top of the arch). For about 3 1/2 months that completely controlled my edema in my legs and feet. I think the disease has progressed to where that isn’t working though anymore.