My recent experience

After coming across this forum and learning about the vancomycin, I’ve been talking with my doctors about it with poor results. The last appointment I had was particularly disheartening, to the point of prompting me to write a letter about my experience. I wanted to share that with you all here today. Any thoughts, comments, questions, etc. would be great.

Below is what I wrote and sent to the patient relations office at University Hospital in London Ontario.

I am writing in regards to my recent consultation with Dr. Teriaky of the liver transplant team at the university hospital on Wednesday Feb. 24.

First I would like to present some context regarding my health history.

I received a liver transplant in January 2012 as a result of my Primary Sclerosing Cholangits (PSC) diagnosis 9 years earlier and have been under the guidance of the transplant team at the university hospital in London Ontario. Over the years our interactions have been quite good, with an occasional tendency towards poor communication during some of our different conversations. Some doctors more so than others.

Two years ago in the spring of 2019 my Alk. Phos. liver enzyme number was becoming elevated and the decision to move forward with an ERCP (after an MRI indicating a narrowing of the native bile duct) to investigate a native bile duct narrowing was made. At this point, the attempt to change my Tacrolimus medication to Sirolimus was also made. This procedure led to an allergic reaction to the Sirolimus medication and a bacterial infection of my native bile duct. I was promptly switched back to Tacrolimus with a course of Prednisone to counter the inflammation resulting from the bacterial cholangitis and had a liver biopsy to diagnose the bacterial cholangitis.

From there I had repeating episodes of cholangitis (with antibiotic (Cipro. + Flagyl) treatment) finally leading to a full constricting of my native bile duct which was diagnosed via another ERCP in November 2019. This led to the decision to proceed with a choledochoduodenostomy to remove the blocked bile duct in January 2020. This surgery led to a number of post surgery complications and extended recovery time. Since then my Alk. Phos. blood work numbers have continued to be significantly elevated.

I was placed on the drug Vedolizumab (Entyvio) in an attempt to bring my active Ulcerative Colitis (UC) under control in hopes that this would also reduce the strain on liver. This has had a noticeable effect on my UC, however my other liver enzyme (AST, ALT, Bilirubin) numbers have become elevated with a slow and steady increase in my bilirubin.

After doing some more research in relation to my situation, I came across some clinical case reports of individuals receiving the antibiotic Vancomycin and this resulting in greatly reduced liver enzyme blood work numbers and reduced severity of symptoms (sometimes complete elimination there of) for both PSC as well as UC. Upon further investigation, I found at least one doctor in the USA who is routinely prescribing Vancomycin for PSC with good results. Along with this, I came to find more than a few anecdotal reports from individuals with PSC and UC who have been benefiting greatly from Vancomycin therapy. Naturally I was intrigued by these findings and curious to know why this had not been presented as a potential option for my situation, given the relative severity and poor response I have been having to current therapies.

I presented my findings and voiced my curiosity to both the liver transplant team (Mostly dealing with Dr. Teriaky) as well as my UC specialist. Both replied, basically saying there was no strong evidence to show that this approach worked and at the end of the day, the Vancomycin would not halt the progression of recurrent PSC, but that they would get together and have a discussion on the subject.

Since then, my bilirubin has continued to increase and my other liver enzyme numbers have been consistently elevated. I had an MRI booked for November 2020 to image my liver, however I delayed this procedure do to the current pandemic situation and my uncertainty regarding the benefit of any findings one way or another and the resulting approach to my treatment. It seems that MRI did not actually get rescheduled at the university hospital and there was some miscommunication, thus resulting in my still not having it done as of Feb. 24 2021.

Regarding the MRI procedure, I had asked the transplant team a number of times what the potential options for treatment were after the MRI, depending on what it showed; either constricting bile ducts or bacterial infection were the two potentials being investigated I was told. I did not receive a clear answer and thus was still not convinced this procedure was right for me at this time, given the relative toxicity levels of the contrast injection and my already compromised digestive system.

During this last consultation I was told that in the event of bacterial infection, the likely approach was to cycle antibiotics; in particular Ciprofloxacin and Flagyl, which are broad spectrum antibiotics with many potentially sever side effects. I have been on these before to treat acute bacterial cholangitis and they do work, however the side effects are quite detrimental and once the course is over, there has been a recurrence of infection in the future, thus limiting the effectiveness of this treatment. The overall potential harm these drugs can do is quite high and is a major factor for me when deciding if I want to proceed with their use.

I had a colonoscopy done in January which diagnosed, active mayo score 2 UC. I had a conversation with my UC specialist during that time again about Vancomycin. She, reiterated the lack of strong evidence for its use, and said she would support me in my decisions, but was not willing to prescribe the drug without the support of the liver team. She also agreed to have a discussion with them regarding the use there of. Understandable.

Since my initial curiosity on the Vancomycin subject was raised, I have had 3 – 4 (I forget exactly) consultations with the transplant team, each time they gave me the same basic answers about the evidence not being strong, but that they would discuss it with the team and my UC specialist. As the time went on and my bilirubin continued to elevate and my symptoms continued to worsen, I continued questioning what the harm in trying this approach was, as there was no other viable approach being offered. I was repeatedly told there was no cure for PSC, that there was a 30% chance of re-occurrence post transplant and that the evidence to support the use of Vancomycin was not available. I was also informed that Vancomycin use would not ultimately affect the progression of PSC.

All of this I acknowledge and have understood since the information was first presented to me, but my interest in the use of Vancomycin as a short term approach to potentially alleviate my symptoms of both PSC and UC, thus reducing the current stress on my liver, colon and body in general has not been treated with the level of respect I have come to expect in communicating with physicians regarding my situation. I have been living with these conditions for quite some time, have been through some relatively major events as a result of my conditions and have continued to take an active part in participating in the decisions being made regarding my treatment; all the while increasing my understanding of my situations through self education and communication with the physicians. As a result, I feel as though I should have earned some level of respect regarding my ability to participate in decisions being made about the approaches to my treatment. This level of respect has certainly been afforded me on many occasions throughout my treatment and I am very thankful for it.

In my opinion, this low level of respect was strongly exhibited during my last consultation on February 24th 2021 with Dr. Teriaky. Upon inquiring again as to the position being taken by the transplant team regarding a Vancomycin trial for my case (as the last consultation was again left with them still going to have a team discussion on the subject). I was told, with an air of frustration at being asked again, that they were not going to prescribe the drug for me. I was made to feel as though I did not understand the evidence regarding the use of Vancomycin at all, and that my interest in the potential benefits was completely unfounded. I felt as though it was made to seem as though I were asking for something highly detrimental and that there was a beneficial, alternate approach to my treatment which I was ignoring. There has been no alternate approach presented, other than the reiteration of the statistics that show 30% of post liver transplant PSC patients have a re-occurrence and that this could end up in another liver transplant.

I then felt as though I was being scolded for not going through with the scheduled MRI which I have been hesitant to undergo, given the (in my opinion) limited benefit of the results in determining the next course of treatment (which I had not be presented with) relative to the toxicity of the contrast injection for my body. Upon further inquiry as to the direction that would be taken with the information potentially obtained from the MRI, I was informed that if the diagnosis returned as bacterial cholangitis, a treatment of cyclical courses of antibiotics (cipro and flagyl) would be administered to control the infections. No clear course of action was indicated if the diagnosis was something else, such as bile duct constriction.

I voiced my concern about the potentially damaging effects of these strong, broad spectrum antibiotics and questioned as to why those would be used and not Vancomycin, which appears to have much fewer side effects, have less potential for severe side effects, is easier for the body to eliminate and is not so broad spectrum. I was informed that many of the bacteria responsible for the acute cholangits would only respond to these (cipro and flagyl) type of antibiotics. This may be the case. It may also not be, given the case reports of Vancomycin success with PSC symptom alleviation.

During further inquiry as to why they would not prescribe me a trial of Vancomycin, I was indirectly accused of patient noncompliance for not going though with the MRI, directly accused of “weaning down” (further noncompliance) my anti-rejection medication (which Dr. Teriaky informed me he was told by another member of the transplant team), while reminding me of his high level of experience, but then being told that decisions were ultimately up to me, as it is my body. All this with an affronting air of arrogance, as if I had no experience, was completely new to my situation and making rash decisions, or demanding completely outlandish approaches be taken with my condition.

I denied any such behaviour and reassured Dr. Teriaky that I greatly appreciate all the expertise, advice, and care that I continually receive from the transplant team and that I have been in full compliance for years.

I informed him that I had had a conversation with the doctor, whom he mentioned told him of the “weaning down” of medications accusation, in the past (over 2 years ago) regarding the potential possibility of “weaning down” the medications at some point in the future, if my enzyme numbers were to stabilize. At that time, I also inquired of that doctor if there were any reported instances of other patients in the past coming off their medications; he said there were a few case reports that he knew of. I never declared my intent to proceed with this action, nor did I act on it. He strongly indicated that this was not a wise approach given my situation and he strongly recommended against it. I acknowledged his points and thanked him for his advice.

From this latest consultation, it seems the decisions which are ultimately up to me in this case are only whether or not I comply with the directive as outlined. My interest in trying an, as of yet unexplored (in my case) avenue of treatment, which has documented clinical reports of success, seems to not be a decision the doctors are willing to “allow” me to make.

I was made to feel as though my inquiries on the subject were completely unfounded, my level of understanding was childish, that I was insulting his intelligence, disregarding his level of education and experience and unappreciative of the service I have received thus far.

I was then made to feel cornered and bullied into agreeing to proceed with an MRI without further serious consideration going to be given to the Vancomycin. I was told once the MRI was complete and if a diagnosis of bacterial cholangitis was reached, a discussion among the transplant team would ensue regarding the administration of cyclical courses of the antibiotics Ciprofloxacin and Flagyl.

That was the end of the consultation and I was left with “a poor taste in my mouth” about how the whole thing had transpired. After giving my self some time to evaluate what had just occurred and to collect me thoughts, I was advised that it might be beneficial to write this letter voicing my disappointment with the way I was treated during this last consultation with Dr. Teriaky. This I have now done.

I wish to suggest that a higher level of decorum be employed in the future when speaking with patients, so as to cultivate the best possible doctor, patient relationships. I feel that this relationship is extremely important in the overall well being of patients and helps to foster a certain level of trust and hope, both of which are invaluable aides to a patient’s mental health and by extension their quality of life.

I also feel strongly that it is important to take into proportional consideration a patients level of engagement with the overseeing of their treatment, that patient’s commitment to educating themselves in relevant areas, as well as the overall experience the patient has with their condition when determining the decisions which ultimately get made regarding the next steps of treatment.

I also feel it would be highly beneficial to the interested and engaged patient to have all avenues of potential treatment openly communicated and discussed, along with the potentials for success, failure and possible side effects, given the available information. My experience has generally been one of having to continually press for more information, which often times is only begrudgingly given, and then more often than not is incomplete, with little to no time for proper discussion there of; even though I have continually exhibited a relatively high level of engagement, education and interest in the workings of my care.

I strongly feel that open, honest, caring communication between a physician and patient is of the utmost importance and in my relatively long relationship with different health care workers, I have experienced the great value this can have to my quality of life. I have also experienced the level of stress and unease poor communication and relations can have.

I once again wish to express my appreciation for all the time and effort which has been afforded me over the years by all the healthcare providers I have had the opportunity to work with. I am deeply grateful for the years of service and the wonderful relationships I have experienced during my time and wish only the best for all those involved in the noble endeavour of seeing to the care of other human beings. May we all grow and learn together from my experience.

Thank you.


Simon Johnson

Thank you for sharing your letter to the hospital patient relations office. I thought it was very well written. You were very detailed and forthright in your experiences yet maintaining the respect due to the physicians. You do deserve to be heard and to be treated with the same respect you give to them. It sounded like one of the doctors was half listening to you and really mixed up the intent of your observations regarding reducing meds in the future. I do encourage you though to do the MRCP’s as needed. Probably once or twice a year depending on progression.
Have they confirmed a recurrence of PSC yet since your transplant?


Hi Simon. My response turned out to be longer than your post! I recognized the parallels in our struggles and once I started a memory dump I couldn’t stop. Well here it is, hope it helps you and others. And I share your gratitude for what my Doctors and all the health care infrastructure in Canada has given me (my life, my kids Dad).
I don’t have UC, but otherwise we have had similar paths and frustrations. I had my transplant from PSC in 2012. I was diagnosed with rPSC in 2014. Currently on Vanco since 2014 with apparent success (all normal LFTs and I hypothesise that I seem to have stopped progression at its very early stages). I cannot absolutely say the Vanco has caused this, nor can I say the sun will rise tomorrow - but I’m pretty sure. You can find a few postings on this forum from me.
As we’ve both seen, Doctors don’t respond well to ‘patient provided cures’ of this internet age, but in our case its deeper than ego. With all well-meaning institutions in the world, there are politics, conficting interests, the “needs of many over the few”, pharmaceutical industry business models, which sometimes frustrate what we see as the ideal solution for us individually. Stay with me here, I’m totally on your side, just giving what I’ve learned as to why the pushback on Vanco. Why aren’t the Doctors so excited to present this new treatment to suffering PSC’ers? (and there is suffering).
These days, all transplant clinics see a lot of PSC patients who ask about Vancomycin. My experience, and my belief generally, is they are having to tow the line on refusal because it presents institutional risk to their hospital. For me, my transplant specialists hepatologists etc, wouldn’t prescribe Vanco (same reasons given to you). However I think my Tx clinic Doctors had to be a bit more disclosive to me since the “ its not proven, papers may be misleading’ account became less potent after I returned at next appointment with LFT’s normalized in correspondence to use Vanco obtained elsewhere. So some of the following is from research and interpretation pieced with what I was told by my TxClinic.
Not giving Vanco for PSC is hospital policy after a board discussion on the prospect (I was told). Not enough scientific evidence at this time I was told. Biggest risk, I have surmised is that this is a ‘controlled ‘ and ‘protected’ antibiotic (through WHO and others) and is the biggest gun against C Difficile infections which can ravage hospitals. Prescribing an important antibiotic chronically for non-proven effect is to flirt with Vanco resistant bacteria evolution. (Note, although this has been observed with IV use, it has never been seen before in gastrointestinal use. But it is a chance, and no hospital wants that on their record or worse an outbreak. Note also, as a further argument its ok to go ahead and prescribe Vanco for PSC, is new alternative antibiotics are now available for C Dif). Second, its expensive and in Canada, the point was made to me that a large demand for it from the PSC population for a not-proven drug would be an unsaleable ask to the insurers and liver treatment funding departments/orgs that are challenged already to pay for transplant medications. Third, it is not known if it really is doing any good or if its just like URSO and does’nt stop disease progression, or if its doing unknown harm, or if you the patient ever gets untreatable C Dif due to resistant bacteria. So those are likely your hospitals reasons too. Vanco simply presents a lot of risks for hospitals particularly if its an off-label (non sanctioned) use.
So, given that off label prescriptions for drugs are routinely and legally prescribed by Doctors given reasonable accounts of efficacy, I have no doubt that if the drug you and I were soliciting from our Tx clinics were not in the categories a) Antibiotic (and a protected/controlled one at that) and/or b) Expensive , there would not be the ensuing institutional risks and it would have been tried immediately without controversy.
Like you I assumed that such a prescription would have to come from the PSC specialists . However, my GP (my family doctor) justified it as adequately science based medicine and provided me a script. As JTB has said on this forum, collect the papers that are on line, understand them and be prepared to sell it (as sufficiently science based), and then talk to your GP, ask for a 3 month trial, or a referral to some specialist to talk Vanco specifically. It also helped when I explained to my GP why the hospital transplant clinic (the PSC experts) could not give it to me – he seemed to understand those reasons for them – and understanding it is therefore not innappropriate for the GP to prescribe ( and he was not stepping on toes or conflicting in any way with my post transplant treatment) and he saw that he did not have the same constraints as the hospital/TxClinic in his private practice. It has been great for my GP to see my success with the treatment (he may well have saved my life). I also hope that I am changing perception at my hospital transplant clinic and PSC specialists who get the opportunity, to observe the vanco cause and effect for one of their own patients without the hospital assuming risk.
Now, my transplant clinic could have got upset about me taking Vanco but they stated to me that because of peculiarities of my case that prevent me from getting another transplant, the ‘risk’ to me associated with Vanco may be justified so they allow it and observe. If I had not gotten the script from my GP, the debates/arguments that I had at my Tx clinic (and there were a couple) would have eroded my dealings with my specialists. But I got lucky with obtaining Vanco elsewhere before I managed to piss them off.
A suggestion is to keep your search out of the hospital and shop the idea with GP’s. Also, check That is an avenue. My transplant clinic did agree to support me on any Vanco PSC clinical trial. This should be agreeable as it is without risk to your hospital, maybe quite expensive for you though. There was a clinical study solicitation a couple of years ago looking for recurrent PSC patients on Vanco. Dr. Shah at Oschner in New Orleans. I tried to get on it but my rPSC was too nacent, not sick enough to qualify. You can go to such a US institute – trial or even just as a walk in patient, and likely even in pandemic – but expect to pay$. Some internationals on this forum go to the US for script. A side note from my foray to that clinical trial, I learned that the PSC research doctors peg the success rate with Vanco on PSC at 2 out of 3 patients respond well. So it doesn’t always work.
I’ve learned a lot from Vanco takers on this forum as you will. And there are (I estimate) about a dozen solid scientific papers concluding Vancomycin efficacy, a couple of case studies, and some low population clinical trials – best you can get for an orphan disease. One editorial out there that says it best . The writing on the wall for Vanco and PSC is getting more and more compelling with each paper. The problem with this body of literature is that by medical standards it is small, not a strong scientific case even though it sure seems so to read them. What I have learned is that – for a few reasons, one I guess being Thelidimide legacy, and one being scientific bias and spin I am told exists where science is commercially driven (sale of pharmaceuticals, sale of health care), and variability in human response - Many many more peer reviewed papers and thousands of subjects are therefore required to ‘prove’ cause and effect and safety of a medical treatment. And PSC’s dozen or so papers, and a hundred subjects doesn’t get there.
Vanco suffers from Orpan drug challenges and its patent is long expired, so it falls between the cracks of the normal profit driven model by which a drug gets approved for patient use for a disease. Theres no money in it. The only reason it gets any research attention at all is private funding, and (I read somewhere) that researchers are interested because its all that’s left after all the other gastro diseases have been solved. So waiting for it to get on label approval could be decades off or displaced if some non antibiotic/ cheaper treatment is found (which would be good). But people like you and me can’t wait around. Its so frustrating that a possibly effective treatment is so available, but so unaccessible.
My transplant clinic has twice diagnosed me rPSC. Note I was diagnosed only from LFT’s and exclusion of other possibilities – imagery and biopsy revealed nothing as it was so early. And full disclosure, one of the alternative explanations for my remission is that it was never rPSC, that the diagnoisis was really a best guess (because it was the only remaining and fundamentally most likely explanation ) and should prove itself fully with further liver deterioration (which I didn’t wait around for). The second ‘diagnosis’ was after I stopped Vanco to see if rPSC would return (my proposal to garner clinic acknowledgement of cause and effect, which they still didn’t really do). The hospital clinic has recently conceded that I should stay on the Vancomycin that I was getting from the outside (from my GP). But I sense these good doctors – who did save my life - struggle with the ‘policy’ on Vanco leaving them to deal with/explain to me my remission ( normalized LFT’s) in an environment where they appear not be able to recognize off label Vanco for such treatment.
I really wish you luck with this… perservere, and remember knowledge is power

Thanks for the responses folks!

I really appreciate your thoughtful reply RJM. Most interesting.

So I am scheduled to have the MRCP coming up here, which I will go through with. I suspect they will then want to put me on the Cipro / Flagyl antibiotic cycles, which I am going to refuse.

I like your idea of getting some papers together in print and bringing them to my GP. It seems unlikely that she will prescribe me, as my GP is in a very small town clinic which “fears the wrath” of “experts”, if you will. I may have to go on a mission and seek out someone who will do as I request.

I am unsure as to how I am going to proceed with my Tx specialists. I will attempt at communicating with one of the other guys on the team to try and get a straight answer, but if they outright refuse to do what I ask, I may have to divorce my self. There are a number of other transplant clinics in the province, which I could in theory go see, but I am finding it difficult to come up with reasons why I continue to see them. They ultimately have no answer for me, other than possible re-transplant, which if it comes down to it is another matter all together really.

It is quite the dilemma, this world we find our selves in.

Aside from the Tx team guys and conventional treatment, I am diving deeper down alternative approaches and coming to understand the bacterial nature of this whole thing I find happening to me. From my mouth all the way through. I will outline of some this in a separate post at a future time.

I am feeling called to really share my journey now with folks of all walks who may be interested and this forum might just be the perfect place for me to get started.

Thanks again for the input and I appreciate all thoughts, advice, comments, etc. It’s great to have discussions from all sides.

I will be around :slight_smile:

Hi Mark,

They have not confirmed the recurrence of PSC. Late summer / fall 2019 I had biopsy which showed no recurrence. It seems to be a chronic bacterial infection, which has been greatly exacerbated with the original ERCP and especially after the bile duct removal surgery. Now there is no sphincter stopping things from “getting up in there” from the duodenum, undoubtedly making this way worse.

To all following this thread; as patients we shouldn’t have to suffer like this.

A couple of comments on vancomycin—there are a number of published papers on the efficacy of Oral Vancomycin vancomycin (OV). OV has resulted in therapeutic benefit for both liver and gut related symptoms and biochemistries of PSC patients as described in a number of published case studies and small clinical trials (I am a co-author of 5 such papers). However it is important to understand that there are many variables that affect efficacy i.e. dose, brand of generic (that may affect bioavailability of the drug), stage of disease when therapy begins, and concurrent meds. That said, without a larger randomized controlled trial ‘RCT,” many clinicians have been reluctant to consider OV as a therapy, leaving their patients with no therapeutic options. RCTs are especially expensive particularly with a rare disease a generic drug that doesn’t have pharma funding. On the positive side, there is a growing number of docs who are now prescribing OV. Also there is a clinical trial enrolling at all 3 Mayo sites.

Regarding the safety of OV, it is a glycopeptide antibiotic with bactericidal activity against gram positive bacteria. When orally administered, unlike other antibiotics, it has minimal systemic absorption; therefore, its effect is confined to the intestinal lumen and perhaps mucosa.

I am happy to provide papers and additional information.

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Thanks for that information.

I think it would be super to have a compiled list somewhere here of the top papers / trials / relevant information regarding vanco and psc (+uc).

Then anyone could take the say top 5 things, print them off and bring them to their doctor to say “look!”. That type of an idea anyway.

I know I would appreciate such a resource which I can bring with me. I would also benefit from the other good information on vanco for personal reference and as “extra ammo” for those doctors who need more information.

I will need to email the papers to you – I am now sure of the rules for giving you my email or vice versa. Let me know.

I’m happy to email you information on vancomycin. I don’t want to break any rules of this site. Email me if you want them.

ModSupport note- You can private message each other through the site by clicking on the person’s avatar with their picture or initial. A box will pop up with a blue message envelope on the top right. We don’t want you sharing your email in the forum because it is visible to ANYONE on the internet, but your private messages are private. I think you may have applied to this through email, but it’s still public.

Great! Thank you. You don’t have these published online somewhere? Is there any good / easy way of going about that so others could read these as well and use the information.

Hi Cactusgirl, I’m glad you tipped your hand that you were involved in some of these papers! Gives me the chance to insert a thank you, to you and to your colleagues, for the work you’ve done in this area. I have a dossier full of the existing body of literature that has accompanied me to many appointments. So they have been highly consequential to me in my campaign (often just as a prop!) and I’m sure many others. Cheers.

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I will just add that my 5-year old son has done so well since getting on Vanco. I have separate posts on this and his lab results, etc. And I have had many communications and calls with Cactusgirl who has been nothing short of awesome, including helping me get a referral in my area to a physician willing to prescribe it (in consultation with Dr. Cox of Stanford).

Cactusgirl rocks.