What do people think please about the research on PBC as an infectious disease and the potential of antiretroviral drugs? There was a flurry of reports back in 2015/6 identifying persistent betaretrovirus in people with PBC and then some small clinical trials of antiretroviral drugs. It seems that PBC people had quite bad gastric side effects and most left the study.
But there have been more studies appearing in the last year and I understand the drugs have improved over the last 8 years or so. The articles below seem very interesting indeed.
Linking Human Betaretrovirus with Autoimmunity and Liver Disease in Patients with Primary Biliary Cholangitis - pubmed.ncbi.nlm.nih.gov/361...
Is there anyone on here who is taking part in the current clinical trial please or who did the last one and has any comments?
I wonder why we are not hearing more about it in the UK? Sometimes medical progress doesn't happen because there are a few people blocking it. You can have a few key medics / organisations that stop progress happening because it doesn't suit their own interests / prejudices.
If there is any chance that antiretrovirals can help, I for one really want to know more about this. The first article suggesting that the betaretrovirus was responsible for PBC appeared in 2010. If that's right, then that's a dozen more years of so many people suffering and many dead, that could have been avoided, and we should be taking any viable chance to stop another dozen years going by with no progress.
I got sick at 19 after a 'mystery virus' left me permanently wrecked and physically exhausted very easily. Those of us who are floored by fatigue know only too well how we are gaslighted and get no support or help. I have always thought that the way I get bouts of a pack of autoimmune symptoms that don't exactly match any specific autoimmune disease, the way they wax and wane, and the way I first got sick, fit the idea that there's an infectious agent in my system that hit me over 40 years ago and has never gone away. The only thing that doesn't go is the fatigue.
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Wilderswimmer
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If you are a member of the PBC Foundation and listen in on a Thursday Q&A when a specialist is available, not sure when the next one is, this would be a very good question to ask of the specialist for the day.
Apparently there is a lot of research behind the scenes at the moment in many sectors, one can only hope that the very clever people researching the subject will find a key to switch off the PBC before it takes a hold.
Worried-mum1 If you are a member of the PBC Foundation you can access a link which takes you to a click meeting room which is useful if you have a private question to ask, for myself I join the Q&A on their Facebook Page which I find easiest for me. If you are a Facebook user already you can go to the PBC Foundation page follow their page and see presentations from earlier dates. If you are a YouTube user you can search for the PBC Foundation where some of the older presentations are uploaded.
Thank you so much for sharing that info Wilderswimmer. It’s very interesting.
Like you I had a ‘mystery’ virus at age 13. That morphed into fibromyalgia and chronic fatigue.
Many years later in 2016 I was quite ill with intestinal pain. For a long time scans didn’t show anything. Later that year a CT scan suggested I may have had diverticulitis. I was diagnosed with PBC in 2020. Microbiome testing I had last year showed a major overgrowth of Citrobacter freundii. This has been halved through supplements and diet and intestinal permeability has also healed. I’ve wondered if this bacteria has been connected with illness and autoimmunity for some time.
What I wonder about is the possibility of a range of infectious agents potentially having an association with PBC. Perhaps both viral and bacterial agents may play a role? In my case my biomarkers were previously showing I was heading into fibrosis. Now I’m heading out of it. But it had to be approached through the gut to do that where pathogenic bacteria and gut dysbiosis were wreaking havoc.
It seems that current clinical research takes a long time to reach clinical practice. I’ve read quite a bit on epigenetics as well in relation to the way mitochondria maladapt. There’s research on epigenetics and PBC too. I feel like it all connects somehow. It would just be great if the research moved faster and effective treatments could be implemented sooner.
Oh wow. Thanks so much for your post, I wish I had been logging in here more often and seen your earlier ones. Have just been reading up on Pubmed, articles about how bile acids influence several liver diseases and how bile acids in turn are determined by..gut bacteria. Your naturopath seems to be massively better informed than most specialists!
Hi, yes the naturopath is the only person who’s really listened to me and has had a real sense of what’s going on and something we can do about it. The bacterial overgrowth halved between August and November and I’d imagine has reduced further still. I will do further testing at some point to see what’s happening. Prior to making changes I had debilitating fatigue, major brain fog, itching, upper right quadrant pain and increasingly dry, scratchy eyes. All I have left now really is mild fatigue but so much better still than before. I feel like I have a life again.
There seems to be a relationship between gut dysbiosis, intestinal permeability, bile acids and epigenetic changes (changes in gene expression) tied to maladaptations in mitochondrial function. There are a number of recent research studies on the microbiome and PBC. The naturopath’s approach has been to adjust the ecology of the microbiome. So progressively you rebalance the gut overall. No two people will have the same microbiome, so PBC may not be linked to a single pathogenic cause and it might be that each individual needs treatment tailored to their microbiome.
Autonomic nervous system dysfunction seems to be part of the picture too and that directly impacts gut function via the vagus nerve. I have a prior trauma history and I’ve been working with a psychologist who works somatically with the autonomic nervous system. I’m sure this is helping too.
I just thought I’d add that research I’ve looked at shows the relationship between bile acids and gut microbiota is bidirectional. So the progression of PBC can in itself change gut microbiota. So it may not be a simple causative relationship of certain pathogens causing PBC, but a complex interactive process in multiple directions.
This research article on epigenetics and PBC is very technical, but the section on the role of the environment near the end discusses potential roles of microbiota and also mentions the betaretrovirus findings:
I take my hat off to you. All you have said is so true that touched my heart. Never have I came across someone who has said it all like the way you have. I have struggled to say it as it is as things change all the time. Trying to keep up with all the symptoms and I always get it’s your mental health.
Fatigue is my worse nightmare as I have no help my husband passed aged 42 who was fit and healthy I lost 4 more of my immediate family. The support they gave me was most comforting and so much appreciated. The fatigue I suffered was helped in every way.
But to be alone with this nasty disease can be soul destroying. I am 16 years diagnosed but it was always put down to my mental health. Before being diagnosed they didn’t know what else to do with me I was treated like a Guinea pig as they never looked anywhere else. I was put on lithium which made me unpredictable. Eventually it was my GP who found the nasty disease.
Hi Really appreciate your comments. That is a very terrible experience you've had, I don't know how many of us would be able to come through it at all.
Trying to think of ways that we can get our voices heard and it seems like the first thing would be to get it understood that we get physically fatigued very easily, such that it makes life much harder, and that it is real. I know it is not everyone but seems to be at least half of people who have AMA M2 / PBC. We need some effective lobbying, which unfortunately in the UK we just don't have.
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