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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Parasites revisited

In my humble opinion I think the recent closure of the post about parasites by Clipper was an important discussion. I think sharing knowledge and dialogue helps to push the science forward. Sure, we have to get treated with the procedures and drugs that doctors DO understand and use if we want to feel better, but we can explore new areas of science at the same time. The American Journal of Gastroenterology has podcasts. There is one on the parasite that Clipper mentioned (h pylori). Although the discussion does not relate the parasite to PSC, it is related to liver disease. I think there will be new learning in the days ahead about the myriad of parasites we are susceptible to and we should at least be open to it. I know I am. Wolf mentioned a PowerPoint by the U of Louisville that discusses the many parasites that we can be exposed to. Below is the podcast if you are interested. Listening to it doesn’t mean you have to change course in how you currently treat your PSC. I don’t think however , if you know you have a parasite and you have PSC, you should ignore it. Whether it caused PSC or not could be answered in the years to come if we stay open to the research, just as we are open to current research on drugs and procedures like urso, vancomycin, fibroscans and ERCP’s. https://itunes.apple.com/us/podcast/american-journal-of-gastroenterology-author-podcasts/id511125340?mt=2&i=380983885

I agree we must explore all possibilities, even those we think absurd or even outright crazy. While I don’t condone disrespect I do welcome the many views presented. Some of the most brilliant minds made some of humanities most astounding discoveries on the back of weirdness, strangeness and outright lunacy - or so the critics thought!

Let the readers of these posts decide what value the information is to them. Censor the crass, rude and crude and leave the rest for us to interpret as we will.

Take care and God Bless
Bill

Bile duct parasites do in fact exist and can cause inflammation and dilation of the ducts. We can’t say with medical certainty that these parasites can or cannot subsequently cause PSC, but we also don’t know with medical certainty what causes PSC period. It is not out of line to speculate that a condition that damages the bile ducts may trigger another condition that damages the bile ducts.

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We do our best to moderate the site and we do as moderators consult with one another before such actions are taken. This is not a one person forum here. The decision to close the post was not done without careful discussion and consideration. If this discussion is to continue we need to move it over to the “Complementary Therapies” section of the site. One of the members in the post that was closed clearly stated that these parasites cause PSC which is not medically sound advice. We have many new PSC patients that come to this site looking for good sound information. Any speculation about this topic or others needs to be done in complementary therapies. I am going to move this current discussion over there if you wish to continue. And yes, readers of the posts can decide the value of even this discussion over in complementary therapies if they so desire. This is not a perfect system folks but we are doing our best to provide a balanced discussion about PSC which has affected all of our lives to one degree or the other. Thanks.

Mark

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Point well taken. I respect that. When newly diagnosed and trying to understanding PSC, this could confuse and/or sidetrack. And I thank you and all the other moderators for what you do here. Kind regards, Dolphin5

Mark,

I agree and do believe that misinformation must be managed as well. I have seen times where just the presentation of a differing view has caused a post to be removed in other forums.

Thanks for your clarification and more importantly thanks for your, and the other moderators, diligent contributions to helping shed more light on this mysterious disease.

Thanks,
Bill

Thanks Bill and Dolphin for your support and contribution to this worthy forum.

Mark

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