The Silent Epidemic: Why We Need to Talk About C. Difficile with Christian John Lillis

Welcome to The Perfect Stool: Understanding, Healing the Gut Microbiome. This is your host, Lindsey Parsons. Today I'll be speaking with Christian John Lilas, the co-founder and CEO of the Peggy Lilas Foundation, or PLF, a nonprofit organization for Clostridioides difficile education and advocacy. Christian John and his brother founded the organization following their mother's death from the infection. PLF works daily to advocate for C. diff patients, finding them resources and treatments to support them through their journey. But before our conversation, if you haven't yet followed or subscribed to the show, be sure to do so. If you want to get transcripts of the podcast, pop over to my website, HighDesertHealthCoaching.com, and sign up for my newsletter. You'll also get my free ebooklet, Finding Your Root Cause Through Stool and Organic Acids Testing, when you sign up. If you haven't yet done my quiz on which stool test would get you to your root cause, you can find a link in the show notes and take that. Now on to the show.

Welcome to the podcast, Thanks for having me.

It's my pleasure. So why don't we start with what C. diff is and how you got involved in advocating for C. diff awareness?

So C. diff, or Clostridioides difficile, which is still difficult to say, so we generally call it C. diff, is a spore-forming bacteria that is found all throughout our environment. When a bacteria is spore-forming, that means that when it's under stress or outside of the body, it moves from its vegetative state to like a seed state or like an acorn state. And when it's in that state, it is really, really difficult to kill. Antibiotics may not kill it. In order to kill it on like surfaces, you have to let it lay in bleach. And so one of the things I recommend for C. diff is not to use hand sanitizer, but to actually wash your hands with soap and water. Not because the soap kills a C. diff, but because the hand washing removes the spores from your hand and they go down the drain. It's also obviously a microorganism. You can't see it. Most people get it through what they call the fecal-oral route, meaning it came out of somebody's butt and you touched it and it ended up in your mouth and you swallowed it. So there's a proportion of us, some say it's 2%, some say it's 10%, that have this bacteria in our body. I'm sure your listeners are very familiar with the gut microbiome. So it's there alongside of all of these other bacterias, viruses, all kinds of microorganisms. And as long as your gut is healthy, it's kept in check. But what happens often when we take antibiotics or take something else that disrupts our microbiome is the C. diff now has all this space to grow because the other bacteria has been washed away or killed off by the antibiotics. And as it reproduces, it gives off a toxin and that toxin is harmful to humans. So in reproducing itself, it gives off a toxin that harms the cells of our colon. This results in what we call a C. diff infection. You have urgent and frequent diarrhea, fever, nausea. Those are the main symptoms. And if it's left untreated, C. diff can severely damage the colon, leading to a condition called toxic megacolon. Which is frequently deadly. So patients who progress to toxic megacolon, or if they have multiple recurrences of C. diff, which I'm sure we'll get into, they're at a very high risk for sepsis and for death. So a feature that distinguishes C. diff from a lot of other opportunistic infections is, is what we call recurrence, meaning you've been treated, it seems like you're clear., but then it comes roaring back. And the reason that happens is because until your microbiome of your gut is healthy again, the C. diff always has an opportunity to regrow, right? So like a recurrence is you have a first infection, typically treated with antibiotics. Most people will experience either a lessening or sensation of symptoms during their course of antibiotics. But then for 30 to 40% of people who have that first treatment, somewhere between 2 weeks to up to 3 months after they finish their course of antibiotics, the C. diff comes roaring back.

Hmm.

And so now you're in a recurrence. We have about, again, 30 to 40% of people, so maybe 180,000 Americans every year will get recurrent C. diff. And once you had a recurrence, if that gets treated and you seem to be out of the woods, your likelihood of a second recurrence goes up to like 50, 60%. If you get a third recurrence, it's now 80%. And also there was a study that came out last year led by Dr. Paul Feuerstat that showed that for every recurrence you have, your chances of sepsis and death increase. Significantly. So it's something we really want to, pardon the pun, sort of nip in the bud and kind of catch it and treat it as early as possible. Yeah. I mean, in terms of why we got involved with this, you know, you, you mentioned the organization I run, the Peggy Dulles Foundation. So Peggy was my mother. She was a 56-year-old kindergarten teacher. She was a single mom for most of our lives. And in April of 2010, she went to the dentist for root canal. The dentist prophylactically gave her clindamycin and a few days later she developed severe diarrhea, fever, nausea. Being a kindergarten teacher, she didn't think anything of it. She was a pretty healthy person, but If you spend 5 days a week around 24 or 5-year-olds, your chances of getting like at least one, you know, she'd get a bad bronchitis or a bad head cold, but again, like just once or twice a year. And she would joke and say the kids slimed me. So she just thought she got something from the kids. It was only when it persisted until like the 4th or 5th day that we became concerned. And I was mostly concerned about dehydration because I'm sure people who listen who have, you know, maybe even IBS, like if you're constantly having diarrhea, like it's really hard to stay hydrated. So we were initially going to take her to a GI appointment, but when I got there, she seemed so fatigued and, you know, her color was off and she was very listless that I said, I think we just need to go to the ER and get you hydrated. And then like, you know, they can test you there. You know, I'd worked in healthcare in other ways before this. And so I kind of knew like, if you show up and they can't help you in the office, they're just going to send you to the ER anyway. We get to the ER. My mother's white blood cell count is over 40,000 and normal is around 10,000. So 4 times normal. This is the indication that you have a severe infection. And about an— when an hour was getting there, the attending ER physician and the attending infectious disease physician asked to speak to me and my aunt who had met me at the hospital. And they basically tell us that my mom has a life-threatening infection. They believe she has toxic megacolon and that it's caused by this, this thing called C. diff. I had never heard of C. diff before. My aunt, who was an oncology nurse, said, How can my sister have C. diff? She hasn't even been hospitalized in like 30 years and she's 56. So it was what it was. She was already going into septic shock. Her kidneys weren't functioning. And, you know, I guess from watching TV or whatever, I thought that if people were in septic shock that they were like in a coma. Like, I, like, I didn't know you could be up and talking and arguing with me that you want a Diet Pepsi and not more ice chips, like, and be in septic shock, right? So they told us at that point that she was the sickest patient in the hospital. And these doctors, they really did everything they could. I mean, I, this was a small hospital in Brooklyn. It was not, you know, it was not a Mount Sinai or NYU. Like it was a small hospital in Brooklyn because we just thought she needed fluids, you know, but they really did everything. They contacted colleagues at like the leading institutions, leading academic medical centers. We talked about moving her, but they were afraid she wouldn't survive the trip. So to sort of shorten the story, that evening, then Candison said, we would, we would perform a colectomy, but we don't know that your mother would survive it right now. So what we want to do is keep her overnight, try to arrest the sepsis, try to reverse the sepsis, and then in the morning, If that hasn't worked, we will do a colectomy in an attempt to save her life. If it has worked, hopefully she'll regain consciousness, but either way we can decide what the next steps are. So we go home, we go to bed. We don't sleep very much, as you can imagine. 6:00 AM, the phone rings. It's the surgeon. He says she has not improved overnight and we have to meet him cuz we have to consent to surgery cuz I'm her next of kin. And this is despite overnight they gave her broad spectrum antibiotics through a central line. They were giving her vancomycin enemas, IV immunoglobulin. And so around 10:00 AM, they perform the surgery. She does much better than anyone expected her to in terms of like her vital signs. And they move her back to ICU. And my mom had 8 siblings. Most of whom still lived in the New York area. So the waiting room by ICU is like 50 people. It's a complete clown show. And, you know, we go in kind of 2 by 2 to sit with her, to talk to her. And I remember telling her like, you're so strong. Like, if anyone can beat this, it's you. Like, you know, like you got through a divorce, you raised me and my brother who are not easy kids. You know, like, you're tough as nails. Then around 4 o'clock, they asked to speak to us and they said that despite everything that they were doing, her brain wasn't getting enough oxygen.

Mm-hmm.

And my mother would've taken a colostomy bag and never— she would've done fine. But brain damage, you know, being in a co— these are things she wouldn't want. So they said they were gonna do their best. People continued to go in and sort of talk to her and try to encourage her.

And then she was awake.

No, no, no. She was unconscious. Oh, okay. Um, no, she wasn't awake. She was, she never was awake again after the surgery. And yeah, so sorry about that. So they asked us to, They asked everyone to step out of the ICU so they could do something for her. And around 30 minutes later, the ER attending came out and told us that our mother had passed, that they had tried 3 times to resuscitate her and that she was gone. We were very, very close to our mother. My mother had 13 godchildren. She was a very beloved person in our community and in our neighborhood. And so the grief was was overwhelming and inescapable and really hard to believe, you know, like— Yeah.

So quickly. So quickly.

And again, like someone who, I mean, she was tough as nails, you know, even when she became a teacher, she still waitressed on the weekends. The woman worked 6 days a week and went to school like almost the entire time, like from the time I was like 10 years old until the day she died, you know? So like, it was crazy. So she, you know, what happened to her is the inspiration, but the secondary inspiration is for us raising CDF awareness is that I was a college-educated person who had already at that time been a fundraiser for NYU Langone. I was, I wasn't working there anymore, but I was a savvy person. And for me not to have heard of CDF, And then to go home and start doing research and find out that it was killing— at that point, they estimated 15,000 people a year. It's now been revised up to 30,000 people a year. And for context, you know, only about 17,000 people die of AIDS every year now, less than 10,000 die of drunk driving. So when you think about all of the attention, deserved attention to those public health crises, for us to have a disease that's killing twice as many people and really nothing was being done about it was unacceptable to us.

Yeah. Wow. That is horrible. So when you, when you now, now with what you know, what should someone do if they have some kind of severe diarrhea like that? How quickly should they see a doctor?

So C. diff diarrhea, it is urgent and it is very frequent. Like you or I might eat something bad. And so maybe the next day we wake up or wake up in the middle of the night and we have to go, you know, like within 6 hours we might feel crappy, but it's gone, you know, like it's out of us.

Right. Maybe throw up too. You're kind of—

Yeah. Like you might feel— it might be loose for another day or two, but like it, you know.

Yeah.

And with norovirus, it might be 2 or 3 days, but it's not that— you're not going 20 times a day with norovirus, you know? Right. So if you have this urgent 10, 20 times within 24 hours, if you have a fever, and especially if you, if you're somebody who's being treated for cancer or any immune suppressant drugs or have recently taken antibiotics, Those are all risk factors for C. diff. So in that case, get to the hospital, get to a doctor as soon as possible, ask to be tested for C. diff. If you're younger, if you're like under 60, most doctors will not think of you having C. diff. So you have to be proactive.

Okay. And better to go to the doctor or straight to the ER?

I mean, I mean, unfortunately in this country, you know, we have this crazy system where people go to the wrong ER and they get a bill for $20,000. So I think you kind of have to, like, I think if you go to urgent care or an ER, if you can get an appointment the next day, but I think, but I wouldn't wait.

Yeah.

And I would say—

because I'm just wondering how quickly the test results come back if you see a doctor, like—

I mean, I would go to the ER if I thought I had C. diff.

Yeah.

I mean, I'm also not the— I've been doing it for 15 years, so I have like a list of doctors of who I would start with and— Yeah.

You've got your preferred doctors. Yeah. Okay.

I would just show up on like one of our board members' doors and be like, Dan, we're going to your hospital's ER.

So how prevalent is C. diff in the US and worldwide?

So the most recent estimates, which are now about 4 or 5 years old, there probably would be more recent estimates, but COVID, the CDC does the estimate and COVID kind of threw everything out of whack. So was back in 2019, around at that time they estimated around half a million infections every year. And about, again, about a third of that people get recurrences, so around 180,000 people that experience recurrence. And about 30,000 deaths. 15,000 of those deaths are directly attributable to C. diff. They're septic. And then the other half are someone has cancer, someone's had surgery, they get C. diff, and C. diff is kind of what pushes them over the edge on something that they might have otherwise survived. So it might be considered like a contributing cause of death as opposed to the primary one. So we say about 30,000 where C. diff is either the direct cause or the indirect cause. Worldwide, unfortunately, it's pretty unclear. Many countries do not publicly report their healthcare-associated infections. There have been efforts in the EU and in Canada, but they're uneven. Back in 20— probably in the last maybe 5 to 10 years ago, pre-COVID, the EU estimated that they had about 80,000 cases throughout the EU every year. I don't in my head know the number, how many people that is, but it's, it's equivalent. But once you get outside of the West, it's pretty difficult. The other thing that I would say is this brings us in that we talk about a lot as patient advocates is like in preparing for this, I, and I knew you wanted to talk about this. I did research on like worldwide estimates, right? And the ones that I could find, they didn't talk about how many people got, but they talked about percentage of 10,000 patient days.

Oh, okay.

And so like, how many, how many hospital days are taken up or? Yeah. Like what?

Okay.

How many, like as an advocate, right? As somebody who's trying to raise awareness, you as a podcast host, like that is useless information to us because it doesn't tell us anything. It's, it's like an insurance measurement, right?

Yeah.

And it also doesn't help us as people who are trying to raise awareness of a disease articulate what that data means to the public. Because the public doesn't care how many days you were in the hospital. The public wants to know how, how likely am I to get C. diff or my loved one or my friend who's in the hospital, right? So 600 out of 10,000 patient days mean, you know, patient hospital days means nothing to us. So I could find some of that for other countries, but I couldn't tell you how many people.

No worries. So I actually just recently heard a podcast and I forget the name because it was really interesting about the fact that many people think that they are allergic to penicillin when in fact they are not. And because of that, these heavier duty antibiotics like clindamycin, vancomycin, et cetera, are used for infections. Unnecessarily, and that something like 97% of the people who think they're allergic to penicillin, it was from something that might've happened. Like you, maybe you had a viral infection that was attributed to the, well, it was coming from a virus. You took an antibiotic and you had a rash, therefore they said you were allergic to it. And it's some sort of thing that your mom told you when you were young. Mm-hmm. And therefore anyway, so that people can get cleared of their allergies to penicillin by going and seeing a doctor, getting a skin test, and then doing like a test, a secondary test.

And if they react to the skin test, if they don't react to the skin test, they're probably fine.

Right. And so I, I wonder, you know, are there particular antibiotics that are associated with C. diff?

So this whole penicillin allergy thing is, is very important. And it's something that people should be aware of because as you said, many people, especially as kids, I'm a Gen Xer, but like millennials and, and Gen Alpha, whatever they're called, people younger than me. Dr. Martin Blaser is a brilliant person in this field. He did a study probably 10, 15 years ago in Nature that estimated that millennials and the generations after them, by the time that they had reached the age of 18, they'd had 20 courses of broad-spectrum antibiotics. And this is an— this is unprecedented in human history to have our— to have— to be— have our bodies shot through with antibiotics so much and often for no reason, for colds.

I just don't get that because like, I've literally never had antibiotics other than my son before I adopted him. They gave him a couple courses, but after that, like neither of them other than— I know, I think my older son, when he got his wisdom teeth out, that was it. 2 days worth.

I mean, I had scarlet fever when I was 6, so I was given, what was it, tetracycline. And you know, before antibiotics, scarlet fever killed half the kids that got it. So like having these things is really incredible, but they're really being overused. And what happens in a case like with penicillin is like somebody was given antibiotics when they were a kid, they got a rash, they got some reaction. The doctor said, your kid's allergic to penicillin. The parent tells the kid, You're allergic to penicillin. That kid then for the rest of their life, or that adult then tells everybody they're allergic to penicillin.

Yeah.

Which is a whole branch of antibiotics. It's not just—

Right. That's amoxicillin.

Amoxicillin. It's—

yeah.

So then what happens, and I've talked to dentists who believe, like right now, if you go to the dentist and you have— they either think you have an infection or want to ward off an infection, they're likely to give you clindamycin. Which is what my mother had. Much more powerful drug than penicillin. Yeah.

And it's, and, or if you have a heart murmur, they'll wanna prophylactically give you that before you have treatment. But I think now that's maybe the, the rules have changed.

They've moved back from that. And so people should, again, my brother has a tricuspid valve prolapse and for years he had to pre-medicate even for a cleaning. And so again, this is how we end up with people having 20 courses of for no reason. But I do think, yeah, if you've been told you have, you have a penicillin allergy, you should investigate that as an adult.

Yeah.

Because if you don't have it, there is a lot less risk.

Yeah. But in terms of C. diff, are the broad spectrum antibiotics like Cipro or vancomycin, clindamycin, are these more dangerous?

Fluoroquinolones are are correlated.

Yeah.

And in the UK, the NHS, they did an antibiotic stewardship program where they restricted fluoroquinolones only for certain very severe infections, and they saw their C. diff rates drop 80% throughout the system.

Okay. What are the, which ones are the fluoroquinolones?

Is it like Cipro? No, Cipro's a different class. Okay. But Cipro is really indicated, clindamycin. You think I would know? Oh, Cipro is a fluoroquinolone. I'm sorry. So, Moxifloxacin, basically anything that ends in O, Oaxin.

Okay.

Like Cipro is Ciprofloxacin, right?

Is it?

Flox, yeah. So all the floxins are fluoroquinolones.

Okay.

So, okay. The ones to avoid, but I mean, you know, I think it's just generally, if you don't need an antibiotic, don't take an antibiotic.

Right. Of course. Yeah.

I, you do really need it, but there is just such overuse, particularly in this country.

Yeah. And one of my mentors and people I follow in the gut health world, Lucy Meiling, she put out a recent article and she said, if you're going on antibiotics, my recommendation is taking butyrate, usually in the form of either like pro, probutyrate or tributyrin. Daily. I, I can't remember the dosage, but it was probably, it would, for me it would depend on whether you had loose stool or if you had, or if you were constipated to begin with, I would probably suggest different dosages. But, and then to take Saccharomyces boulardii, 2 pills, which is 500 milligrams, 3 times a day as preventatives. And that those can help you to avoid these kind of opportunistic infections while you're on antibiotics.

Yeah.

I don't know if you have, you have suggestions in those areas based on, on your work or—

We have, so the challenge with, with supplements is that it's very hard to know the quality of them. And so we kind of steer away from suggesting things. What we actually tend to suggest is that people try to get more probiotics from through food. So like drinking kefir, without sugar, low or no sugar yogurts, fermented foods. If you like that, you know, could be adding sauerkraut. So things that are gonna give your body the building blocks and the good probiotics. Of course you can always supplement them, but actually one of our most popular articles on our website is like, how do you choose a good probiotic?

Oh, okay.

And I think that's like a very American thing where we want like, oh, well give me a pill that will solve my, my, it'll fix my stomach. And it's like actually the best thing you can do is eat whole foods and things that give you that. So, so on our website, we do have a, we do have a lifestyle and nutrition guide for people that, that have had C. diff, have C. diff. Like you can imagine it's difficult to eat when you're that sick, but it's really more about like once you're past the acute stage, like how do you make yourself less likely to get it again?

Yeah. Hey, this is Lindsey here. Just letting you know that if you're tired of dealing with digestive issues, like bloating, indigestion, soft stool, diarrhea, constipation, reflux, IBS, IBD, or the numerous health conditions that come about when your gut is off, like brain fog, weight gain, UTIs, fatigue, mental health issues, or complex conditions like fibromyalgia and ME/CFS. That's my specialty. With my 3 or 5 session gut health coaching packages, we'll discuss different stool and functional medicine tests to find out the root cause of your symptoms. I'll interpret the results and provide clear explanations, empowering you to make informed choices for your gut and overall health. And together we'll develop a customized action plan based on your test results so you can find relief and regain your health and vitality. I come from a functional medicine perspective, trying to incorporate the latest peer-reviewed research and educating you on protocols used by functional medicine practitioners, but devoting lots of time and support to my clients the way a doctor simply can't. If you're interested in a 3 or 5 session coaching package, you can sign up for complimentary 30-minute breakthrough session. Or if you can only afford one appointment at a time, you can book an initial 60-minute consultation. Links for those are in the show notes. Now back to the show. So one of the, one of the cycles that happens, you know, like when you have a gram-negative bacteria, which C. diff is, is that you start to get, it pulls oxygen into the colon and then it promotes the growth of these facultative anaerobes that can live in the presence of oxygen. And then you get more and more of them. So the butyrate turns that process around by feeding the cells lying in the colon, therefore creating a hypoxic or oxygen-free environment in which those bacteria don't thrive. So that's one of the reasons that butyrate's protective in that, in that scenario. I, I incidentally have a butyrate product called Trippin.

I'm like, I'm like, I, this sounds good. I want some. I've never heard of it before. Yeah.

I mean, it's good for it on a daily basis. It's good for loose stool or people who tend towards, you know, if you have like IBS-D, that kind of thing. So, so that was one of the things that anybody who I—

where were you when I was in college, Lindsey? I could have used the, all the butyrate I could get when I was in college. Knew where every bathroom was between my house and the college and everyone near my classrooms.

Well, yeah, so I, so that would, because I gave it to everybody, I, I ended up making a product called Tributrin Max that, oh, nice. Is, is a, a reasonably high dose butyrate so you don't have to take so many pills. So anyway, so you mentioned that people wouldn't suspect that C. diff was in a younger person. So is it primarily in older people then, like who are hospitalized or what's the typical?

So historically that's true. Historically C. diff was almost what they would, what they used to call it a nuisance disease, meaning that it wasn't terribly fatal, but you know, you're in the hospital, you've had surgery, now you have diarrhea all the time. Like, you know, it, it, it was just, made life difficult. And so, and it did primarily affect elderly people and people with immune, with compromised immune systems. However, that changed in the early aughts. It was first detected in Canada. So it's called the North American Pulse 1 strain or the NAP1 strain. And that started showing up in Canadian hospitals in 2004, 2005. And it was far more virulent, meaning that it was much more toxic. It caused many more deaths, especially among the elderly, but it was also then increasingly seen in younger and younger people. So it's con— it's thought now that the NA.1 strain is the primary strain that we see in the West. So that's why you see so many more people getting it and getting sick. Over the past 10 or 15 years, we have also seen and it's hard to know, is this the disease or is this changing medical practice? But I think as more and more people are having outpatient surgeries, we are seeing much more C. diff that is community onset where like women who give birth and they're released out within 36 hours and then 2 weeks later, cuz they had a C-section, they were shot through antibiotics, they now have C. diff. That's not— we hear that story a lot. So really doesn't discriminate. Like they've even done studies looking at Black Americans versus white Americans and white Americans have a slightly higher rate of C. diff and then Black Americans have a slightly higher rate of poor outcomes. And I think in both ways, that's sort of institutionalized racial capitalism, you know, which is like Black people don't get healthcare as often as white people do. So we're going to have slightly more chance of a healthcare-associated infection. Once we get it, they could then get a poor outcome because again, they don't have access the way that we do. So it's nothing to do with our race. It's everything to do with like the society, right? But one of the things that has been concerning is that we are seeing it more and more in the community and we're seeing it among younger people, even children. And they haven't necessarily taken an antibiotic or been in the hospital recently. And so there's a big, in my brain, there's just a big question of like, what is this change? Why are we seeing this? Has the bug changed? Is it that those people that had 10 to 20 courses of antibiotics as kids are now adults, young adults, you know what I'm saying? So, so being older is a risk factor, taking antibiotics is a risk factor, but it can happen to anybody.

Yeah. Yeah. And I'm sure that the compromised microbiome that is coming from, because I do see so many people with their comprehensive stool tests and I see, you know, they have no Faecalibacterium prausnitzii, which is one of your primary butyrate producers that sits in the colon. They don't have any Akkermansia muciniphila, which eats that mucin layer and helps regenerate it and keep it healthy. So those two are like working together there in the colon and they don't have any of those. So obviously getting rid of the bad stuff, but then eventually you gotta rebuild the good stuff with prebiotics. Things like, well, they love all the polyphenols, pomegranate and cranberry and matcha and things like that. So getting people on gut shakes and, and getting them eating beans and lentils so that they can build up those bacteria again. And, and now of course you can even get the Akkermansia probiotics. So I see that a lot with, with people who've been through a lot of antibiotics. Yeah.

And I think, you know, we also have a ton of processed food that is impacting our guts and is calorically dense and nutrient light. And so I think when you and, you know, when you and I were growing up, a lot of our meals were cooked at home and you're using more or less whole ingredients. I mean, I know that that's the way I cook, but I'm very lucky and privileged in that way because I work from home. You know?

Right. Right. No, I, the biggest problem, I think, I mean, obviously there are bad things in processed food and just sort of poor quality food, but it's just that there's not nutrients. That's the thing is they're not right. They're all, if you look at it, if you look at say the typical school cafeteria, right? Like the vast majority of the calories are coming from gluten and dairy.

Yeah, exactly.

It's not, they're not getting a lot of vegetables and fruits and, or if they're offering them, they're poor quality and students don't eat them. So at the end of the day, these processed food diets are just simply lacking in the things that make you healthy and they build up a microbiome.

The kids are shot, also shot full of sugar, and then they're like, sit still for 8 hours. Good luck.

So what is the standard of care currently for C. diff?

So when I first heard this question, I was like, well, the standard of care is bad. But what I mean by that is, you know, based on the clinical guidelines, most doctors will prescribe either vancomycin, which as we talked about earlier, has a 30 to 40% failure rate, meaning people get a recurrence, or fidaxomycin, which has a lower failure rate, but is not as widely used. Vancomycin is completely generic now. It's, it's, it's not— no one has the patent. Fidaxomycin is still branded and it costs a lot more money, but it has a— the lower rate of failure of having like maybe 10% of people have a recurrence to me is worth it. A, yeah, as a patient, but it'll also be worth it in terms of our healthcare system because if we have fewer people with recurrences, fewer people are spreading C. diff, et cetera, et cetera. But yeah, insurance doesn't wanna pay for it. And then besides that, you know, cause I know we're gonna talk about FMT, but like, there's a lot of doctors out there who, and it's not just doctors, I don't wanna drag doctors. My father-in-law's a doctor. People get used to how they practice something. And so, you know, even before the FMT craze, like a lot of doctors like, oh, you got a recurrent C. diff, I'm gonna give you, oh, I gave you 10 days of vancomycin, I'm gonna give you 14 days of vancomycin. Oh, that didn't work. I'm going to give you 30 days and then a 60-day taper where you take vancomycin every day, every other day for 60 days. And, you know, there are doctors out there, that's what they do. And the thing of it is, is like the whole time that that's happening, the person is suffering. You know, the person is worried about the C. diff coming back or the C. diff is back or, you know, they, they took their last vancomycin pill last night and they know in the next 3 or 4 days it's going to come right back again. And, you know, by the time you get diagnosed with C. diff, particularly if you're a younger person, like you might've been sick for weeks, you know, and now you're going to spend the next 3 months being put on and off of antibiotics. And, you know, if you think you're going to have diarrhea, it's like, you don't want to leave the house because you want to be near a toilet. And obviously there are many people whose job involves them having to be outdoors, having to work someplace. I talked to a young man. A few months ago who lives in Wisconsin. And he, he is an engineer who works on like cell phone towers. Now imagine being worried you're going to poop your pants and you have to be outside in the cold. There's no bathroom. So it, it's a very torturous disease in that sense. And the guidelines don't even suggest any sort of microbiome restoration until at least the second recurrence. So we've also had people ask me like, well, why don't we just give everybody an FMT that's ever had C. diff? And, and there are reasons why we don't do that either. So I think it's a combination of, of what the insurance doesn't wanna pay for, and then plus doctors' sort of clinical, habitual clinical practice. So it is something where people have to really advocate for themselves because generally you're gonna be given 10 days of vancomycin or fidaxomycin, and for 60% of people that's gonna resolve it. It's the other 30 to 40% of people who that's gonna be the beginning of a journey.

Yeah. So, so if people can do anything for themselves, the first thing would be advocating to get the, what's it called? Fidacomycin.

Fidacomycin.

Fidacomycin. Okay. So advi—

Dificid is the brand name in the US.

Dificid?

Dificid.

Dificid. Okay. So advocating for that as your first-line treatment because it has a lower recurrence rate, and then if it comes back. What do you think is the best thing from your research compared to what might be the standard of care of going back onto another antibiotic?

So when it's an acute infection, right? Mm-hmm. So like when you're having the chronic diarrhea, like you probably will need to go back on an antibiotic once you have a recurrence, but what you want is that antibiotic and then what is going to follow that, that's going to help restore your microbiome.

Mm-hmm.

Right. So over the past, maybe 15 years or so, there's been a, a growth in the use of fecal microbiota transplant. This is essentially taking highly tested for pathogens, for transmissible diseases, but minimally processed stool, like literally put in a blender with saline and then via colonoscopy or enema, or God forbid nasal gastric tube, putting it back into your colon. And this is not a new idea. As far back as 4th century China, they were using some form of fecal microbiota transplant. It's also used widely in veterinary medicine. So basically we're giving you the stool of a healthy person to sort of kickstart your own gut microbiome. So, but it was also hard to get because it's considered experimental, you know, for a whole host of reasons. Thankfully, in the past couple of years, we've had two FDA-approved— they're, they're called live biotherapeutics, LBP, live biotherapeutic products. And one of them is basically a more refined version of the typical FMT. So it's, you know, they're, they're getting donor stool. They're testing it highly, they're processing it, making sure that it doesn't have anything transmissible. And they're sort of standardizing the dosing and stuff. So we know what we're getting. That's one option.

Um, is it, is it the Delivered via enema, or is this now a pill, or?

So this one is the first one that I'm talking about is delivered by enema. They are now, there are some doctors who are doing it via colonoscopy. Technically it's off-label, but there are some that are, they're studying it. There's a paper out there that shows it's actually even more effective when it's done by colonoscopy, just because it gets where it needs to go better than enema.

And what's that one called?

So technical name is almost— is unpronounceable. So the brand name is Rebiota.

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We try to stick to like technical names, so we're not promoting products, but oh, I, the name, the names of these things are bizarre. Like it's not like fidaxomycin versus Difucid. It's like LGS-JISIM. Oh yeah. It's like terribly, it sounds like you're speaking a different language. Like I'm an alien. And then as you, as you were starting to say, after Ribota was approved. They approved another drug called Voust, and Voust is pill— is a pill form. And Voust is also where Rebiota is sort of the whole, you know, again, more processed, more tested version of a standard FMT. Voust is actually selected, like they're using specific firmicutes. And so when you take it orally, it's designed in such a way that by the time it gets to your colon, and the capsules release, it then sort of seeds your gut and helps your gut to restore itself. Neither I nor Peggy Lewis Foundation have any opinion on which of those is better for you, or if you need a standard FMT, which for people with severe and fulminant disease, they may need a standard FMT because if you're that sick, you can't wait for the pill. If you know that you take the pills like over 3 or 4 days. So you need something more immediate. So, but what we do think, what we are happy about is that there are now options, but like any new drug, they are more expensive. You are going to have to fight with your insurer to get it covered. We are advocating for greater access to the extent that we can, but it's the kind of thing where like you're going to have to go in there and, but if I had C. diff and I've had a recurrence, I would, I would go to my doctor and I'd say, okay, so I want fidaxomycin and then I want either Rebiota or Voust, you know, depending on what we think is best. Cuz I don't want a third recurrence.

Okay. So the, what was the success rate with FMT prior to these, these other options?

So NIH does a prospective study in 2021. Of 229 patients who are part of the National Fecal Transplant Registry, which is run by the American Gastro Association. And they found that about 86% of people had a sustained cure of between 1 to 6 months. Some of them missed the 1-month visit. So, so the, the, the data's just a little skewed there. I do think, I hesitate to directly compare like antibiotic treatment versus FMT, because when we're getting down to people getting FMTs, and some of these were in pill form, some of them were enemas, and most of them were colonoscopies. You know, we don't really know the exact mechanism of why an FMT works, right? Like, I mean, we, we know that it's that we're replacing bacteria, but not exactly which bacteria, you know, and so it's going to be different because it's coming from a different donor. Yeah. And what we do know is that, and something that, you know, you've sort of been talking about from your own perspective is a healthy microbiome that is a diverse one, you know, that has a lot of different ones. And oftentimes when you see people who are very susceptible, they have low species variation, you know, they're missing something. So, and then of course, if you look at different cultures in Asia, their microbiomes look different than Western microbiomes, but they're both healthy microbiomes. I'm talking about a healthy microbiome, not one that's degraded, right? Correct. So, so we're not giving FMT to two-thirds of patients who've responded to the antibiotics to begin with. So the 86% rate, it's great for people that have FMT, that have recurrence, but it, it's just hard to directly compare the two. And especially because you're gonna get antibiotics before you get either of them.

Right. So the, so the standard of care is, is how many courses of antibiotics do you have to try before you can access FMT or one of these other pills?

Yeah.

Or other treatments. And so typically your second recurrence, so you have to have 2 courses of antibiotics before you can get ahold of these other treatments.

Well, 3, cuz you would've been in the man house twice and then before they give you One of these, they give you antibiotics to reduce the acute infection and then—

Then they give you that. Okay. But you've had failed antibiotics.

Yeah. The, the FDA actually lists them as preventatives, not treatments.

Hmm. Okay. So in theory you could get 'em sooner?

No.

No. Okay.

It's for the prevention of recurrence. It's like do.

Oh, prevention of recurrence rate. Yeah.

It's just a, it's such a weird thing.

Okay. And what, what about the success rate with, with Ribbiota and Voust? Are, do they have any data yet?

They both do. I don't work for either company, so I tend to stay away from, from those things. They are both, they both do have good efficacy and they both have very minimal side effects.

So, and are they pretty accessible? Like, whereas it used to be I mean, you've gotta find somebody who does fecal transplants and all that. Like I, people have trouble sometimes finding that. Is it, does every hospital do that at this point?

Yes and no. So they are, so in my world, in my, the way that I always saw this from the time that like we started really hearing about FMT in 2011 and 2012, sadly too late for my mom, but I always imagined it as like an interim step, right? Like there was a period and there are places now where like you'll just get a whole blood transfusion, right? But there are also things where like you need platelets, you need volume, you know, like, so I kind of imagined it was like eventually they would figure out and they would have different options for like whatever was going wrong with you. Like not just for C. diff, but then like what are the other applications, right? So both Rebiota and Voust are out there. They can be prescribed. There's no, they're easy to order. Typically a gastroenterologist would, would perform it, especially if it's enema, or if you can get them to do it in a colonoscopy when it's with Rebiota. And then with Voust, because it is pills, it's even, it's easier cuz you just take them while you're home, you know?

Right, right.

So in terms of like the patient. The difficulty is getting them covered, right?

Yeah. And if they're not covered, how expensive is, is something like Voust?

So the list price for Voust is $17,500.

Oh my Lord.

And for Reboot, it's just under $10,000.

Mm-hmm.

That said, both companies have really good patient assistance programs, and we've worked with a lot of people where if you're uninsured, they've given it for free, they've waived the copay. So they've really been trying to work with people cuz they also understand that a lot of times if you've had recurrent C. diff, like you might not have been able to work, like people lose their jobs with this disease. You know, and then I think some of it is like you have to fight with your insurance company a little bit. Like you have to be willing, and if you are not well enough, then have somebody who can do that for you.

Yeah.

The other thing—

time is of the essence. So a lot of times insurance companies sit on these decisions for a while. So it's like you get it and then you fight or what?

Sometimes that happens.

Yeah.

Sometimes that happens. And then, you know, you might get a bill for it and you have to fight because it should be covered. I mean, this is again, something that we're also working on as an organization in terms of advocating, because like I said to you, $17,500 and you're like, whoa, right? That sounds like a lot of money in terms of our healthcare system, which is like $3 trillion a year. It's actually not a lot of money. It's a drop in the bucket.

A day, a day in the hospital is what, at least $10,000, I would think.

Right. But if you end up hospitalized with C. diff, the average hospital stay for C. diff is going to be $70,000.

Okay, exactly. So, so it's in their interest to some extent to make sure you get better.

Exactly. And my mother who died, like the cost of her being hospitalized and having surgery and those treatments for 36 hours was over $70,000. And she died. So this may be for a separate conversation, but one of the things that I feel like in this country in particular, but in the West more generally, is that we think we've conquered infectious disease. And we think that everything related to it should be cheap. I think HIV might be the exception, right? But like, we want a free flu shot. We want a this, you know, like ever since they stopped giving away the COVID vaccines for free, uptake has dropped precipitously, right? And my feeling is like, if this was cancer, if it was heart disease, if it was a joint replacement, nobody would— $5 figures, nobody would even blink their eyes, but an acute infectious disease, people are like, well, $10,000. It's like, you're saving somebody's life. Like it is literally a life-saving treatment. Do you know how much money I would've paid to have my mother live?

Of course. You know, I know that in the early days, people were just getting fecal transplants from a family member, you know, but they were doing it in the hospital. Are they still doing that?

Or That is still an option. There are still some doctors who offer that. That is probably going to be an option for people who have severe and fulminant disease. Also perhaps will be an option for kids because unfortunately neither of these products is approved for pediatrics. Mm-hmm. And so that's something that we have been, and we're continuing to advocate at FDA to figure out, like, can we carve out an exception where FMT could be used more broadly in kids because they're not— these drugs are not approved for them. But you know, it, it's a sticky widget because the FDA, yes, they take public commentary. Yes, they use this or that, but like, they're kind of oblique in terms of like why they've decided what they've decided.

Right.

I don't think that they take into account the sort of public health impacts and population health impacts of their decisions.

Yeah.

Like if you even mention cost to them, they won't talk to you about it anymore.

Wow.

But it's like, we live in a for-profit healthcare system. Cost is gonna matter.

Yeah. So yeah, I guess that, that leads me to the final question, which is what are the current obstacles in the world of C. diff advocacy and how could my listeners be of help?

So I would say we have two primary obstacles. The first is low public awareness. You know, I talked to you earlier. I said HIV, there have been studies, 85% of Americans know what HIV is. Only 30% have heard of C. diff. Oddly, 95% have heard of Ebola because there was a movie about it with Dustin Hoffman in the '90s, right? And everyone's seen that movie. So, but you know, there are many other things that people are much more aware of. Including Zika, which yes, I don't want a malformed baby, but like, it's not killing people. You know what I'm saying? Like it's a lot of it has to do with the press. And I think because this was historically a disease of old people, we're not great to elderly people in this country. Like we should just be really clear about that. So I think if you've had C. diff or a loved one has had C. diff, like getting them to talk about it, being open about it, sort of forgive the sort of the language, but like coming out about it. And I think because the primary symptom is diarrhea, people are embarrassed, but it's like, if you needed blood transfusions, would you be embarrassed? If you, you know, like it's, you're just sick. Like us having a poop thing is like, that's just us being weird. You know, you said you have kids. I have a, I'm the oldest of 19 first cousins. I have a 6-year-old nephew. I've changed many, many diapers in my day. You know, like there are lots worse things than poop happening in the world. So awareness. And then the secondary thing is that I think this is applicable to a lot of infectious diseases is that people get treated for it and then they forget about it. And they don't think about all the other people who weren't as lucky as they were. And so what we notice is that people who have had recurrences that have lasted for months or years, they're the ones who join us, become volunteers, stay in the fight. But if more people, people listening to you who've had C. diff, maybe, maybe it was cured in a couple of weeks. Like if they signed up for our mailing list, wrote their congressperson, shared stuff on social media, though I'm not crazy about social media lately, but if they were just more open about it and talked about it, that would be very helpful because I understand like who wants to think about the last time they were sick. But like, yeah, this is a disease that we're increasingly building the tools for it and getting more tools for it, but no one knows the tools because they don't know the disease exists.

Is there a, uh, C. diff Awareness Day?

November is C. diff Awareness Month.

Okay.

And we're going to hold one for our See C. diff campaign the entire month of November.

Okay. Well, you remind me, uh, in November and I can, uh, relink to the episode. It'll probably be published some somewhere in the May, June range, I'm guessing.

But, um, yeah.

Okay.

Yeah. Those are the two biggest ones. And then there are things that are downstream from that, you know, like there's not adequate public health funding anywhere in this country. So any communicable disease. We struggle with. I think, you know, asking your hospital or the place that you get healthcare, like what their infection rates are, just to keep them thinking about it. You know, because I work in this world and I'm sure you have something corollary, but like there was just pre-COVID, like in 2018 and 2019, they were finding people were getting CRE, which is a very antibiotic-resistant, dangerous infection. And they were getting it from colonoscopy and endoscopy scopes that weren't properly cleaned. And so I had to have a colonoscopy endoscopy. I called the doctor's office like 3 times and I was like, and how are they cleaned and who cleans them and how are they packaged and who opens the package? And I mean, I went, but the point is like more people have to, have to question, do I need this antibiotic? What is it for? You know, have you isolated the infection? Like, what do you think I have? You know what I'm saying? Like, Rather than— and worst of all, if you're sneezing and you're coughing or whatever, and it's cold and flu season, like, do not go and ask for an antibiotic.

Yeah. That's viral. It's not bacterial. Will not help.

I mean, you know, if it persists for more than a week, then go to the doctor and say like, test, you know, you can, they can test you, but have them test you.

Yeah.

You know, exactly.

Right.

Don't assume it's strep throat because you woke up with a sore throat one morning. Maybe the heat was on too high the night before you slept with your mouth open. I don't know.

Postnasal drip and it made your throat sore. You have acid reflux or a lot of other reasons, right?

Okay.

So where can people find Peggy Lewis Foundation?

So we make it really easy for you. You can obviously Google Peggy Lewis Foundation. We're pretty easy to find. It's very uncommon last name. But you can find us at cdif.org.

Oh, okay, great.

And we are, so that's C-D-I-F-F.org. So just like the disease, we were very happy when we scooped up that URL. Well done. And then on most social media, if you look up Peggy Fund or just look at Peggy Dolos, we'll come right up.

Okay, great. Well, we will link to that in the show notes. Thank you so much for sharing about this. This is a topic that's long overdue for this podcast.

I know it's interesting that you guys hadn't tackled it yet, but you've been tackling a lot of stuff that other people are not talking about. So good, good for you. I've been listening and I'm going to go back and listen more because obviously we both care a lot about gut health.

Yeah. Well, thanks.

Thank you for having me, Lindsey Parsons.

My pleasure. I love talking to advocates because of their sense of justice and passion and also my history, of course, in advocacy work on healthy school food. Anyway, you can support the podcast by buying supplements at a discount from my Fullscript dispensary, ordering tests at a discount from my Rupa Health Labs store, or using my affiliate links to iHerb, which is available worldwide, or Amazon. And just a note that you can use my Amazon link to buy anything, not just supplements, and support the podcast. So I'd love it and really appreciate it if you'd bookmark my link and use it for regular Amazon purchases. If you'd like to connect with me online, you can follow my High Desert Health Facebook page, join my Gut Healing Facebook group, or join my newsletter list at HighDesertHealthCoaching.com, as well as follow me on X, Instagram, TikTok, and Pinterest. Links for those are in the show notes. Thanks for joining me today, and here's wishing you all the perfect stool.