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Nurse researcher Barbara Cordell discusses her KevinMD article, “My husband’s rare drunken disease made me an international advocate.” She explores the complexities of auto-brewery syndrome, including diagnosis challenges, treatment options, and the importance of advocacy for those affected. Key topics include the role of the gut microbiome, the risks of misdiagnosis, and effective strategies for managing the condition. Barbara shares actionable takeaways for health care providers and individuals dealing with ABS. She highlights the latest trends and solutions to improve support and awareness for this rare syndrome.
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Transcript
Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Barbara Cordell. She’s a nurse researcher, and today’s KevinMD article is “My husband’s rare drunken disease made me an international advocate.” Barbara, welcome to the show.
Barbara Cordell: Thank you for having me.
Kevin Pho: So let’s start by briefly sharing your story and journey.
Barbara Cordell: Well, like most medical journeys, it came to me, and my husband started having rare symptoms, unusual weird symptoms back in 2004. Both of us are nurses, and we’ve been married a long time, so I knew him pretty well. But he would have this brain fog and sort of loss of coordination—stumbling, difficulty speaking—and I, I really thought it might be hypoglycemia or something like that, but the episodes were very few and far between, so I didn’t think a whole lot of it.
Over time, they became more and more frequent and severe. We took him to a neurologist, cardiologist, endocrinologist—everything came back normal. And then eventually, we found out he had alcohol in his system because I took him to the emergency room. So that’s how we first found out about it, and I had to do a lot of digging to even come up with the term autobrewery syndrome.
And then it was pretty much a nightmare to get him diagnosed and treated.
Kevin Pho: Alright, so before we go further into your journey, for those who aren’t familiar, you mentioned autobrewery syndrome. What exactly is that?
Barbara Cordell: Autobrewery syndrome is where the gut microbes get imbalanced, and those fermenters that we all have start growing out of control, and they’re producing too much alcohol for the body to tolerate.
Kevin Pho: And just to, again, give context, how rare is this disease?
Barbara Cordell: We think it’s rare, but underdiagnosed. I’ve been in touch with about a thousand people over the last few years, and that’s worldwide. But we’re constantly finding new people who think they might have it.
Kevin Pho: Alright, and your husband back in 2004 was dealing with brain fog, fatigue, a lot of symptoms that could point to other diseases. And he went to a whole spectrum of physicians. Everything came back negative. I’m sure they checked for a lot of the major things related to your specialty. And it wasn’t until you went to the emergency department and they found alcohol in his system. Right? So what happened next? How did that progress to a diagnosis of autobrewery syndrome?
Barbara Cordell: Well, initially the emergency room doctors told us that he must have alcoholism because they didn’t know of any way possible that the body could make alcohol. And I certainly thought that could be a possibility—you know, I’m not naïve. So I did consider that, and my husband did too, and he said, honestly, I haven’t been drinking on these days when I’ve had episodes.
That’s when we started really digging in the scientific literature and hit on that word autobrewery. But again, most physicians have not heard of it. We went to several doctors and our friends and colleagues that we worked with, and they said, I’ve never heard of such a thing.
So it was really hard to get a diagnosis. We finally found one doctor who would listen to us, who read the literature, and said, Hmm, this is very interesting. I think I’ll pursue it.
Kevin Pho: So tell me more about that visit. How did you find this doctor, and what exactly did the doctor do in terms of next steps to diagnose such a rare condition?
Barbara Cordell: Right. So this doctor was a gastroenterologist, and he was a friend of ours and colleague in the hospital where we both worked. He was a godsend because he actually was interested in solving the puzzle. He read the literature, and back then we didn’t have very many case studies, but he read about them and determined that the best course of action would be to do an inpatient carbohydrate challenge. He and other colleagues could see with their own eyes that Joe was in fact making alcohol in his gut, that he wasn’t drinking it.
So that’s what he did. We did that carb challenge. People were convinced because they saw the evidence. And then he followed the protocol that then was written in the literature. We’ve learned a lot more since then.
Kevin Pho: Alright, so once you have that diagnosis pinned down, what happens next? What are some potential treatment pathways once that diagnosis is made?
Barbara Cordell: Well, at that time, we really thought most cases were caused by a fungal infection. And so my husband was treated with antifungals, but he also went on a very strict low-carbohydrate diet, because we know that all fermenting organisms tend to feed on some substrate—some type of sugar or carbohydrate. So he did a very strict low-carbohydrate diet, and within weeks he was better.
He stopped having these episodes, he really felt better, he lost weight, he did all the right things, and he was one of the lucky ones. We feel like he was cured within a year, and he has not had an episode since.
Kevin Pho: So give us a sense of the time frame. So from the first symptoms, and you mentioned it took about a year before he started having these symptoms under control?
Barbara Cordell: Right. So it took us five years to even figure out that he was making alcohol. Initially, again, we were chasing those hypoglycemic kind of diagnoses or TIAs or something like that. When we found out it was alcohol, it took us about a year to find Dr. McCarthy and have him actually do the test and diagnose him and start the medications.
Joe took about another year to really feel like he was well. And Dr. McCarthy and I then published his case study, and I thought we were done, but people started contacting me from all over.
Kevin Pho: Yeah. Tell us more about that. So you published his case study, and people all over contacted you. So what kind of questions were they asking you?
Barbara Cordell: Well, most of them were desperate, and they really felt like they either had autobrewery or some facsimile of it, and they were just desperate to find a doctor and know what literature was available and how they could get help.
Kevin Pho: So all this happened in the early 2000s, and it’s about 20 years into the future from that now. What kind of advances have been made regarding autobrewery syndrome?
Barbara Cordell: We have learned so much in the past 15 years. It’s really remarkable, and a lot of things are coming together in the scientific literature. I did start this advocacy group, and so we’re collaborating with other people, other doctors around the world, and trying to learn more.
We’ve really discovered that most autobrewery is caused by bacteria rather than yeast. And so more of the treatments are turning toward antibiotics, but we still—that foundation is a better diet. The low-carbohydrate diet is essential whether people take medications or not. But most of our patients now are having to take antibiotics.
Kevin Pho: So tell me what your life is like now as an advocate for this disease. Tell us some of the things that you’re doing.
Barbara Cordell: It’s become almost a full-time job for me. I’m retired from my primary job, which was in health sciences as a dean at a college. And so now I full-time consult with doctors, patients, and caregivers, and try to provide information.
We have a website that has a lot of links. I have written a book called “My Gut Makes Alcohol,” and people buy that book, and all the proceeds go to the nonprofit. We’re really busy. We stay busy.
Kevin Pho: And how’s your husband doing with the treatment? So it’s primarily diet related, and what’s his life like? What’s his quality of living like?
Barbara Cordell: He’s doing great. He feels like he’s back to his—actually better than he was before the autobrewery—because he lost weight, he learned how to eat better, manage stress. He’s really healthier than he’s been prior to the disease.
Kevin Pho: So I’m a primary care physician, as you know, so now that I’m hearing about this, it’s going to be in the back of my mind. Tell us, what are some of the things that I should look out for in the exam room that may point to this rare condition?
Barbara Cordell: Yeah, thank you so much for saying that, because we need everyone to at least know about autobrewery and consider that in a differential diagnosis. Of course, you can’t tell the difference when someone is drunk—you don’t know if it’s endogenous or if they actually were drinking—so it’s hard at that point to differentiate. But when a patient comes into your office and says, I’ve been having these episodes and I really don’t drink, I think it’s so important to listen to the patient.
A lot of times, and I know I’ve done this in the past, we dismiss people and say, Oh, they’re probably secretly drinking and they just aren’t admitting it. And I understand that feeling, and yet if people are insisting that they’re having these multiple episodes and they’re not drinking, I think it’s really important to listen to them and at least search for that possibility. Could they be making more endogenous ethanol that’s causing them to be drunk? I think that’s huge.
Kevin Pho: And of course, the symptoms in these episodes that you’re talking about, they will be similar to alcohol-related symptoms?
Barbara Cordell: They are similar and yet slightly different. We hear reports all the time, and I remember feeling this, that this is not your typical, Oh, I’ve had a few drinks and I’m buzzed and I’m happy to be a little bit drunk. This comes on suddenly. It comes on completely. We see tremendously high BACs—we see them at 0.3 and 0.4, and I’m not saying 0.03 and 0.04, they’re really high—and yet people are still functioning. And so that’s a big difference right there, that they get extremely high numbers, yet they’re still functioning.
Often the caregivers will say, You know, I’ve seen my loved one have a few drinks, and they’re happy, and they’re having a good time, they’re talking to people. And yet this is different. This particular intoxication is angry and sort of not their normal personality. So I think that’s one of the things to really listen to from the caregivers and the family members.
Kevin Pho: And if one suspects autobrewery syndrome, what are the next steps in terms of the diagnosis? You mentioned your husband’s case—he had to have an inpatient diet challenge, a carbohydrate restriction. What kind of diagnostic steps are taken normally as the next step?
Barbara Cordell: So that’s still the published protocol, to put the patient into a controlled setting. We are doing outpatient now because so many hospitals can’t really handle the inpatient time; they don’t have the space and the staff. So we are doing that carb challenge on an outpatient basis. But we’re really working toward—and when I say we, I’m working with a bunch of researchers and doctors—so it’s not just our nonprofit organization. We’re really trying to publish new guidelines for diagnosis that would include doing EGD, colonoscopy, and taking samples and looking at the fermenting organisms rather than forcing someone to get intoxicated.
Kevin Pho: And then it could be diagnosed with these endoscopic techniques?
Barbara Cordell: It can. It’s a little bit more challenging, and most of our labs aren’t quite up to the metagenomic sequencing that we’re looking for. But I don’t think it’s going to be far off that we’ll be able to do that.
Kevin Pho: And in terms of risk factors for contracting this condition, is it genetic? Do we have any known risk factors that would make one more prone to being diagnosed with this?
Barbara Cordell: There have been some small studies that we’ve conducted that look at risk factors, and the most significant one was long-term antibiotic use. For example, if someone took antibiotics for acne and they were on tetracycline for ten years, that’s a huge risk factor. But we also know that we have antibiotics in our meat and in our foods, and so many other sources, and that many of us have taken a lot of antibiotics over our years. And so that’s a big risk factor because that’s what disturbs the microbiome.
Kevin Pho: And demographically, are there specific groups that are more prone to be diagnosed with this?
Barbara Cordell: We haven’t really done the demographics, but I can tell you just from personal experience and anecdotal experience, most of our clients are white males—the vast majority. And most of them eat that Western diet. You talk about risk factors—that’s another huge risk factor: the ultra-processed foods, the Western diet, high-carbs, high-sugar diets.
Kevin Pho: And again, in terms of treatment, it’s really carbohydrate restriction. There’s no medicine—oh, I guess you did mention antibiotics—but long term, would it be primarily diet related?
Barbara Cordell: Long term, it is diet related, and it’s more lifestyle also. It really does involve stress. When you think about what the gut microbiome does, it regulates our mood, our immunity, our digestion—so many things. And so it’s not just one thing fits all, and we’ve even had people who just do the diet and supplements, stress reduction, lifestyle modification, and they get well. Other people are so sick that they really do need to take that antibiotic, sometimes an antifungal, but always the lifestyle changes are important.
Kevin Pho: And what do we have to look forward to in the coming years when it comes to things down the pipeline for autobrewery syndrome?
Barbara Cordell: We’re very excited to be involved in some research right now. We have one study that’s already been accepted for publication, and we’ll be looking toward really sharing that information. And we’re involved in a fecal microbiotic transplant study right now. We’ve accepted some subjects into that study, and it’s an NIH-funded study that’s being done to see if these fecal transplants will help people with autobrewery syndrome.
Kevin Pho: We’re talking to Barbara Cordell. She’s a nurse researcher. Today’s KevinMD article is “My husband’s rare drunken disease made me an international advocate.” Barbara, let’s end with some take-home messages that you want to leave with the KevinMD audience.
Barbara Cordell: I think the big thing I’ve already mentioned before is listening to our patients and really attending to those people who say, But I haven’t been drinking. And the other thing I would say—and we hear this all the time—is that as health care providers, we get compassion fatigue, and I would really encourage people to do their own self-care so that they can continue to be compassionate. Because I hear stories every day where people were dismissed and even called names, and that’s not compassionate.
So we really would encourage everyone to be compassionate with yourself so you can rebuild your own compassion with these patients.
Kevin Pho: Barbara, thank you so much for sharing your perspective and insight, and thanks again for coming on the show.
