I am new to the site so maybe many of you are already aware of the research on phage therapy for PSC. I came across a recent (Nov 2019) presentation on bacteriophage therapy targeting the bacteria Klebsiella pneumoniae. The company is Biomx and they are specifically working on PSC. I am hopeful and excited that there may be an effective treatment on the horizon. The presentation on their web site is: Use of a Bacteriophage Cocktail for Eradication of Klebsiella pneumoniae in
Primary Sclerosing Cholangitis. They speak of clinical trials in 2021.
For those that have used Vanco, do you know what bacteria was the target of your antibiotic therapy?
Has anyone had a lab test to determine the make up or overgrowth of bacteria in the GI tract or liver? If so, what is the name of the test?
Interesting find. Will definitely look for that article. As a dentist, I am always suspicious of microbes (bacteria, fungi + their byproducts) as the cause of or trigger for the autoimmune response… Just two weeks after starting oral Vancomycin my son’s liver enzymes came way down. And after being on it for the past two months, with such good test results and a remission of Chron’s, his GI doc is having him completely stop the Vancomycin. She will do another blood test in 6 weeks and see what happens. But I am incredibly happy this seems to have worked for now and that he gets to have a break from it… plus a break from Vanco gives us more of a chance for the VSL #3 probiotics to do their thing. My son has been on a strict Specific Carbohydrate diet for 15 months, since he was initially diagnosed with Chron’s, and he also started remicade infusions two months ago. I know Klebsiella ferments lactose pretty easily, and the SCD is lactose-free. I think I remember there is also a theory that C. Albicans may play a role but perhaps that comes later down the line after the initial tissue injury. He has not had a test for specific microbes in the liver or intestines, and there was no specific type of bacteria that was targeted in his treatment (I asked about this from the get-go.) It’s my understanding it can be challenging to get a complete list of existing microbes. I am excited that more scientists and clinicians are delving into this and, like you, am hopeful that this will lead us closer to better treatment options and even a cure!
Thank you for the information!
What dosage has your son been taking?
What dosage are you going to use for the Visbiome (VSL#3)?
My son was taking: Vanco 500 mg 3x/day & one packet of VSL #3 450 billion bacteria/packet. We also make homemade yogurt, using Nancy’s whole milk probiotic yogurt as a starter, which has a bunch of strains: L. Rhamnosus, L. Casei, Bifidobacterium, etc.
Thank you - I appreciate all the info!
The info gap right now is that we aren’t sure how vancomycin works for our disease. It may very well be that “good” bacteria and a normal gut microbiota contribute to our disease and that this is resolved by vancomycin induced dysbiosis. While the advanced PSC biliary microbiome is significantly different than controls (likely confounded by cirrhosis, cholestasis, etc), the early PSC biliary microbiome is remarkably similar to healthy controls.
Commercial fecal test kits are available for ~$100 USD to test the GI microbiome. I’ve personally used American Gut and found that my vanco treatment results match up well with published studies. It is a weird gut composed of Enterobacteriaceae (mostly Proteus), Akkermansia, Tenericutes, and select Firmicutes. I think this is potentially useful as a snapshot of what is working. If my treatment stops working I can retest and attempt to identify what has changed and work from there. All this with the caveat that we really don’t have any idea how this works.
The only way that I’m aware of to test the biliary microbiome is by endoscope and this is unlikely outside of a trial.
Just FYI on the American Gut Project. I was checking it out last night to get a test kit for my son and they do not have kits available as they have shifted their focus to Covid-19 for the time being. So, I went to Sun Genomics (recommended by a fellow support member) and ordered their test kit at $147. I am anxious to see what they say. If anyone has another company they have had good results with, please let us know:)