Hi friends...I wrote a long post in April explaining my appointment at the National Institute of Health in Bethesda. I have an immune deficiency (called Common Variable Immune Deficiency) and Primary Biliary Cirrhosis. At my first appointment, they explained that they didn't see my PBC as a "slam dunk" despite my very positive AMA M2 (it was 150) and my biopsy, because CVID patients receive immuno globulin infusions and have the antibodies of thousands of people in the bloodstream. My doctor really thought I had Nodular Regenerative Hyperplasia - which is a different liver disease, caused directly by the immune deficiency and the many infections that we have...which leads to Portal Hypertension. I recently had my second visit to NIH, and I'm also being followed by some doctors at John's Hopkins, and it turns out that I have BOTH PBC and Nodular Regenerative Hyperplasia. I was wondering if anyone else on here has both? It was quite a blow...both are early stage, but I'm scared. It's good to have more information, but this wasn't what I wanted...
PBC and Nodular Regenerative Hyperplasia: I... - PBC Foundation
PBC and Nodular Regenerative Hyperplasia: I have 2 liver diseases.
Hi Jenny - So sorry to hear about the double diagnosis. I'm looking up the second disease you have so I can better understand it. It does sound scary but remember the best news you could get after the diagnosis is that it is early stage.
If you get on the URSO it can slow it down for years. I am Stage 4 with PBC and they didn't catch it until it reached the final stage. I understand being scared I think about it every day but I've learned not to think about it all day. I'm religious with the meds and that makes a huge difference.
Other than your GI you should see a heptologist he can better tell you what the treatment of the combination of two auto immune diseases is.
I have met two people in my area in the states that have this and they have had it for10 and 20 yrs. and both work full time jobs, have children and know every day is precious.
Best of luck and hang in there! By the way I go to a heptologist at University of Penn.
Calogia
Calogia...thank you for checking in. I have two GREAT hepatologists - at NIH and John's Hopkins. I am very, very lucky with the care I am receiving. Take care of yourself!!
If these are auto immune conditions, then you should read about Low Dose Naltrexone (LDN) and determine if it is something you should consider. If you Google LDN you will find the LDN REsearch Trust in the UK, and their web site will provide lots of information and useful links. Also try Dudley Delaney's web site, and join the Yahoo LDN Users Group, both of which will provide links to other resources about LDN. Read about Dr. Burton Berkson and his use of LDN with alpha lipoic acid and other supplements and diet to also control auto immune conditions.
My son has PSC (Primary Sclerosing Colangitis), a conditon similar to PBC, and also an auto immune conditon, as well as Ulcerative Colitis, also an auto immune condition, and his use of LDN, diet and various supplements have returned his liver function values to normal.
Sick~That is a great suggestion, and not the first time I've heard it. I will research this! Take care!
Good afternoon, I had to look some of these disorders up for information-- if I'm correct the NRH seems to be related to medication(s) that are necessary perhaps due to CVID issues? I do know that taking urso for PBC will be benificial for liver. Portal Hypertension is a complication for alot of liver disorders at some point unfortunetaly .There are so many advances being made in the diagnostic tools to assess these conditions that I am positive that because you are a patient of NIH & Johns Hopkin, you will probably receive cutting edge treatment(s) & for sure, your doctors are top hepatologists. Is there a support group associated with either of these institutions? I hope you are able to locate a group & meet with them in person. I am sure that there are others with the same health issues & if there weren't all these darn HIPPA rules/laws in the way.........
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