Hi friends. I haven't been on these boards for awhile because I've been dealing with other health issues, but I thought I'd check back in and report on my progress and new developments. I was diagnosed in January as a stage 2 PBC. I have an immune deficiency called Common Variable Immune Deficiency due to a terrible bout with E-Coli in 2011 that wiped my immune system. Because I have both of these rare diseases, I was accepted at the National Institute of Health (NIH) in Maryland in April. It was there they discovered that I have PBC and also Nodular Regenerative Hyperplasia, a second liver disease. For about 18 months I have been having chronic UTI's and they felt that the constant infections and medications led to the NRH. I threw myself into research, and found a local practitioner who was successfully treating women with Interstitial Cystitis (Chronic UTI's and bladder pain). And what she found is so incredible - 98% of her patients test positive for Lyme disease. As did I - including a lyme co-infection due to mycoplasma. This week I found several medical studies that prove both mycoplasma AND E coli can lead to Primary Biliary Cirrhosis. I feel like I am unravelling a puzzle from an enigma. In my case, the mycoplasma "set up camp" in my bladder wall, embedding infections that went undetected due to biofilms. I am on long term antibiotic therapy, and my NIH team is on board with it, in the hope that if we halt these infections, perhaps we can reverse some of the NRH. I am blogging about my journey at embracingplanb.org.
In the meantime, I am on URSO for the PBC and my liver labs are in the normal range now. I cannot tell you how happy this makes me. 6 months on URSO got me into the normal zone. I have zero side effects from the URSO. I do, however, have pretty constant pain in the liver, under the right side of my rib cage. The whole area is really sensitive, and I can't even touch that side -if I am sitting I have to have a pillow at my side. Does anyone else deal with this type of pain? They did an MRI/MRCP to make sure I didn't have any lingering gallstones from my gallbladder removal in January, and it was clear. Glad to reconnect with you all. Praying you are doing well!
Be positive
Does taking Urso cause some liver pain?
Pbc trigger and possible treatment
Am an oldie on here by sounds of things in relation to how long have had pbc!
Pbc? Or not?
