GENTLEMAN IN STAGE 4, LITTLE SCARED, ASKING FOR IDEAS/INPUT

[kehello]

Hi, I was the one who offered the PBCers Organization also in addition to HealthUnlocked. I write to a PBCer in Kentucky, 80 year old female, great, great shape for not even ever using Urso/Ursodiol! She is a "naturalist" (I call her that/might be a wrong term) so to speak, and offered me this to pass on to you ..... (she also belongs also to HealthUnlocked in the U.K.):

Try to avoid red meat, all alcohol, Tylenol. Try to eat things that will help like spinach, broccoli, cauliflower, beets, yogurt and avocados (only from California, she indicates). Drink lots of water. She reads you can survive on only 1/5 of a working liver (my comment in addition - it is the only organ we have that regenerates itself! I have read this many times, and some give part of it away to a loved one or other needy patient.) Milk Thistle (my comment in addition to hers, is that I am going to get it at Walmart Tues, tomorrow) heals the liver. She indicates it is the Silymarin in Milk Thistle that does the job (my comment added you can find reference to it all over Internet, and it is even on Wikipedia online)!

Kathleen in Ohio (73 year old female dx'd 1 in 2001/biopsy, 2 in 2011/biopsy, 3 in 2017/oh-so-comfortable-and-trusted now, but new Elastography). Many accompanying autoimmune disorders, greater fatigue now in late 2017, but basically other than the autoimmune disorders am greatly asymptomatic/no right upper quadrant pain since being dx'd and medicated with Ursodiol; no esophageal varices) PS: Also I am the one who suggested trying to contact the gentleman in CA who has been in Stage 4 for 10 years now - he's on the PBCers Organization Digest from time to time, and you can address him there. There is so much hope! Great lives ahead with this silly disease we have! I notice many, many more are being diagnosed. Our doctors and researchers are learning much more. There is usually good information on research (specially-raised mice/going off memory only right now!) being done through a Dr. Gershwin, I believe, on the Digest belonging to the PBCers Organization. ........ I have two e-mail addresses now - get HealthUnlocked through AOL/: [e-mail] and [e-mail]

[Ballymahon2]

Thanks for sharing with us

[Hidden]

Thank you for this. Wow...very impressed with 80 year old, not on urso.

[Yankeerose3]

What can be taken for pain? Dr says take Tylenol.

[Hidden in reply to Yankeerose3]

I consulted with my Hepatologist & he told me taking a few ibuprofen every now & then was okay.

But every person is different, I would go with what your Hepatologist says. Hepatologist is the only doctor I trust completely about meds. I run everything by him.

[Yankeerose3]

Thanks

[Sona_akb]

Thank you for sharing. I was searching for milk thistle effect and found your post. Impressed by the 80 yo lady and wondered how long has she been diagnosed?? Please let me know if you have any information