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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
September 28, 2025
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Answer Summary

Members widely confirmed experiencing brain fog, lack of coordination, and memory struggles during flares, with many finding comfort in... Read more

Members widely confirmed experiencing brain fog, lack of coordination, and memory struggles during flares, with many finding comfort in knowing they are not alone. A key theme was elevated ammonia levels linked to liver disease, with several members sharing that their doctors prescribed Xifaxan, which helped reduce symptoms over a couple of months. Many members also shared coping strategies like writing things down, daily walks, word puzzles, gardening, staying active outdoors, and being patient with themselves.

A myPBCteam Member

I too have brain fog. But too hard to pin points since a have several ailments that cause it. I been hearing a lot about the good honey does for many things. Me I’m so seriously allergic to honey it’s included with my drug akkergies. Apparently some drugs have honey in them. I pray for all of you suffering with brain fog. It’s not fun.

January 21
A myPBCteam Member

My brain fog is sooo bad. I am uncoordinated at times as well, I'll be walking and just go sideways, or get up from sitting and stumble like I'm drunk. It's awful. I thought I was the only one, happy to hear I'm not alone. But sorry you are experiencing this too. It's not fun.

October 1, 2025
A myPBCteam Member

JimS, thanks for sharing your day! I enjoy walking in the evening and enjoying the beautiful sunsets.
Lately sleeping has gotten awful..true insominia. I can'teven take an afternoon nap like I used to! I wake up at 4 or 5 in the morning and can't get to sleep, probably sleeping 5 hrs most nights.
I tried melatonin and wake up about 4 hours later. I am on Livdelzi now, starting my 2nd month so wondering if that is it. Dr. did put me on 2mil B12 for anemia. I have a Dr appt in 2 weeks so will address it then.

November 2, 2025
A myPBCteam Member

Brain fog has been difficult to explain to family and friends, and quite frustrating when having a conversation. Driving somewhere and not realizing how you got to a certain location because you can’t remember anything you saw or passed. My Doctor explained about ammonia levels and found it to be elevated but not extremely. I’ve been on xifaxan for a month now so we’ll see.

October 31, 2025
A myPBCteam Member

Hey Denise, hopefully you can gain some solace from this. Do not fret! You are Not alone! I experience exactly what you mention. I also need to write most everything down. I frequently find myself in a room, forgetting why I'm actually there. I call it 'my wanderings'. What I find most troublesome (and embarrassing), however, is being in a discussion with someone and completely losing my train of thought. You are definitely not alone!

Make you an offer ...especially since I am now rarely able to either fall asleep, or if so, sleep for very long, ... if you ever need to share, drop me a note at anytime! Might actually be able to guarantee for an instant reply!

Take things as they present themselves. Please do not overthink or overworry yourself! Be kind to yourself!
Njoy your day!

September 29, 2025 (edited)

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