PBC Foundation

I found this study interesting. Possible genetic virus/PBC

globalnews.ca/news/1840509/...

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Maur22,

Excellent article. Thank you. I'm going to show my doctor that. Antiviral drugs, hmmmm.

That was written in 2015. Wonder what's going on now if anything? Be interesting to find out.

Years and years ago, I got a super bad sore throat. I thought it was strep but it could have been tonsillitis. I never went to the doctor. I toughed it out. I had a fever and full body aches... I mean every single joint hurt. The throat issue went away in about 8 days but the arthritis like joint aches lasted for about 2 months. Then everything just cleared up. When I went to my doctor for another reason several months later, I told her about the sore throat and hurting joints. She got really mad and said that I should have come in. She said down the road I may experience problems as those germs (strep/tonsillitis) attack and weaken other organs if left untreated. She mentioned the heart.

That was over 20 years ago. I've never had heart issues, and never had arthritis again until just last year when I was diagnosed with seronegative RA and PBC. But I wonder about these viruses. Do they park themselves in our bodies and wreak havoc as time goes on?

Thanks again for the article.

Stella ❤

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There is so much to learn in science, genetics and illnesses. I wish the government spent more money on research.

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I had something similar about 30 years ago.. sore throat, fever of 103 for about 7 days, body aches and bone aches. They did blood work and said I had a virus. That was it! I mentioned in an earlier thread that I firmly believe this is some sort of virus that they are missing, that perhaps settled in our livers. Have you ever had antibiotics while you've had this illness and noticed how much better you feel AND your LFT'S go down? This happened to me recently. I was on Amoxicillin and Clarithromycin FOR H-Pylori (found by mistake actually looking for varices) AND low and behold, my liver enzymes were close to normal while on this medication! Anyways, just wanted to add that. Hope you're all well.

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Actually, I've steered clear of antibiotics because of several years of surgeries. I was on antibiotics over and over again. Intravenous at one point. Who knows? maybe this kept my "undiagnosed" PBC from getting worse 9 years ago. My doctor thinks I've had it awhile. But..... I thought that antibiotics didn't work on viruses. I thought antibiotics only worked on bacteria like an infection. I just don't know about all that. But this sure is making for interesting conversation isn't it? I sure hope that we are close to finding something that can eradicate this from our bodies.

Stella ❤

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Maybe the antibiotics masked your PBC! I was quite shocked when I had my blood work recently after taking the meds for the H-Pylori. I'm willing to get on them again, just as a test dummy; but first need to wait a little bit to see if they go up again.

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Yes....that could be true. I'm interested in antiviral meds now. Maybe even things considered antiviral aids that are from natural sources. I sent that report/article to my doctor via email. We'll see what her take on it is.

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Let us know what the doctor says.

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I will. I hope she's humble enough to read it.

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It is fascinating. Think of this...if this is indeed viral like hep C which is now curable, that means we could be cure from it if they put in the research & development of a viable medicine. It will cost mega bucks, but we can be cured!!!

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I agree. What a wonderful and hopeful thought!!! 🙌🙌🙌

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I will bring this up with my hepatologist when I see him. Giving him a copy of the actual research paper. Will ask him to read it for “fun” & see what his thoughts are.

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Hi again,

I was just thinking... if PBC could be viral, How do you factor in the several women on here that have siblings, or a Mother, Aunt or grandmother who also have PBC. I guess my question is, could PBC be hereditary and also a virus??

Thanks,

Stella ❤

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Yes...that is what the study seems to be pointing to. A genetic virus. Really strange. Men get PBC also. My Dad was just diagnosed.

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Oh my.... I'm so sorry. My baby sister just had her labs done because of me. She's 9 years younger than me. Her Alk-phos is elevated. 😔 We have a younger sister, there are 5 of us (sisters) not to mention my 6 brothers!! I have a few family members to get in contact with.

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Yes, really interesting. Thank you.

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Thank You for posting that. I googled the actual research paper.

ncbi.nlm.nih.gov/pmc/articl...

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interesting article thank you for sharing. I hope some further progress has been made since this article was published.

best wishes

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That's exciting. Thanks for sharing.

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This is my doctor who I see now. A wonderful man who has made it his life mission to cure PBC. He still believes you have to be geniticaly predisposed and then if you are in contact with the virus you will get PBC. I’m very grateful he is my doctor.

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Your Dr. does the research? What does he have you on?

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I am on urso.

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I'm confused... Your doctor is the guy mentioned in the article that Maur22 posted, Andrew Mason?

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Yes he is. I was referred to Dr Mason for clinical trials. I am too healthy to join any clinical trials. He has taken over my care now. See him in 6 months

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That is awesome! Lucky you! He too believes this is a virus ?

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You are very lucky! and thank you for sharing this information, please keep us all updated on your journey

Some day we will all be cured

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Hi all,

I'm taking l-lysine and monolauren, as antivirals. I'm working with my np on a treatment for recurring Epstein-barr virus. Told my GI about it and he's very interested. Apparently Epstein-bar can settle into organs....Don't know when I had it the first time, but had the same symptoms Stella was talking about for several months when I was first diagnosed with PBC. Check out monolauren. It's being touted as as a natural antibaterial and sometimes used for antibiotic -resistant bacteria.

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Anthony William, #1 New York Times best-selling author of Medical Medium, Life-Changing Foods, Thyroid Healing, : Secrets Behind Chronic and Mystery Illness and How to Finally Heal and Liver Rescue believes this is in fact Epstein Barr virus. Here is a link to his page and if any of you are on facebook, He is under "Medical Medium." Check it out :)

medicalmedium.com/

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Thanks :)

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Hi Donna, has Anthony Williams actually discussed PBC? Can you find any direct info from him on it? I have spent months trawling through his info, books, online, blogs and cant find any reference to PBC. however, I'm living in hope for some reference to PBC in his Liver Book due out in Oct 2018 - Fingers crossed

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Not that I have found however he claims all autoimune's are due to the Epstein Barr virus and that the body never really attacks itself like the medical profession believes. He says it is a symptom of the virus. I'm still researching his info as well.

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How is it working Lizzy?

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My np's protocol for epstein-bar is a year long course of homeopathic ebstein-barr virus at varying potencies combined with l-lysene and monolaruin. I'm only in month 3, but my symptoms of inflammation and achiness worsened at first. Now only bad for a day. I guess we'll retest after the program to see if virus still active.

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Please post the results. That is so interesting. Thank you for sharing this also. :-)

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