[00:00:02] Dr. Jane Talkington Well, what happens is the botulinum toxin goes to the neuromuscular junction and it prevents the signal from the brain going down the nerve and jumping over a little river to tell the muscle to contract. And so think of this river as having a bridge and when that bridge is blown up, that communication does not transfer. With botulism, you become paralyzed because the muscles are not able to contract and you think about that, that includes your diaphragm muscles, responsible for your breathing. You don’t even realize you use muscles when you take a breath, but you absolutely do. And when those muscles are not available, you find yourself in an air hunger situation where you can’t get your breath. Muscle fatigue happens. So you’ll see people not able to hold a pencil, hold an arm. As it advances, the eyelids become so heavy that they drop. And people look like they’re dead or in a coma, but they’re fully there. They just don’t have the muscles to hold their eyelids open. So it’s a very serious disease, very scary. There’s two ways you die from botulism. One is that you just can’t breathe and you suffocate to death. And the other is a cardiac event. So people are all worried about the breathing part and they’re focused so much on that that they don’t look the other direction down the street. And here comes a Mack truck called Cardiac Death.
[00:01:25] Narrator That’s Dr. Jane Talkington, who calls herself the only living botulism historian in the world. What she just described is one of the most dangerous toxins on Earth, and it’s more common and more misunderstood than almost anyone realizes. Welcome to Countermeasures. This season we are looking back at historic public health outbreaks and bioterrorism events. From the Black Plague to the 2001 anthrax attacks, we’re looking across the span of time to uncover how we have responded to health threats, what we’ve learned, and what we still have to do. Botulism isn’t one disease, it’s several, depending on how the toxin gets into your body.
[00:02:14] Dr. Jane Talkington Well, first, let me explain that botulism also affects animals, so we’re not going to get into that type except to say that it affects the fowls, like a waterfowl; it affects chickens, cattle, horses, and it’s the economic impact of that kind of botulism that generates a lot of research in animal botulism. But for human botulism, we have the two rarest kinds would be intestinal botulism, in the adults and infant botulism. And this is where they would ingest a spore or be contaminated by a spore. And the spore internally creates the toxin inside the body and just perpetually releases the toxins. Infants under 12 months of age do not have a mature flora fauna system in their gut system. So they’re not able to process the spores as an adult would. So that’s why infants cannot eat honey because the spore often lives inside the honey. They just discovered Botulism in babies around 1976. Rapid botulism can take a baby in the first couple of months of life within 12 hours. So the parent puts the child down to sleep for the night and they’re not awake in the morning. 10 to 20 percent of the SIDS deaths are actually botulism deaths. So that’s a revelation. For adults, the most familiar route is food. So, foodborne botulism is what we’re most familiar with. And that comes from eating contaminated foods, improperly canned foods, maybe a beverage that’s not consistently refrigerated, or even food left out on the counter, such as a baked potato wrapped in foil, creating an anaerobic environment where the spore on the outside of the baked potato produces toxin, and then not heated properly the next day and served. That’s caused outbreaks before too. The strange thing about botulism is that the toxin itself has no taste and no smell. So there’s nothing to warn people that the food they’re eating is poisonous, is deadly. And lastly, we have the iatrogenic botulism, and this would be caused from botulinum toxin injection. When the toxin spreads from the injection site, it goes systemic and it can cause either acute deadly botulisim or a non-lethal mild type of botulism that becomes chronic. And mild botulism is a misleading term because mild can run from just annoying and bothersome all the way to completely horrific and life altering. Iatrogenic botulism can happen from an overdose of botulinum toxin, such as an off-label medical use, but it also happens at FDA approved doses, at very low doses. Sometimes you see people buying botulinum toxin off the internet. Or from a shady person that’s created it to look like a real brand name product, so it’s a counterfeit toxin, that also causes iatrogenic botulism.
[00:05:17] Narrator No taste, no smell, nothing to warn you that the food in front of you could kill you, which is exactly what almost happened to the next person you’re going to hear from. Michael Christy grew up in Marin County, California. His brother is a commercial tuna fisherman. And one summer, that connection almost cost Michael his life.
[00:05:39] Michael Christy So my brother is a commercial fisherman. He fishes for albacore tuna. I had eaten some home canned albacore tuna that we had gotten from a friend and it had been in our camping box for a couple of months. But that summer I had been growing tomatoes and I did some canning. And when my brother brought me the fish, there was a lot of it. And so I’m like, oh, I’ll can some of this fish. I know how to can now. And so, I bought the jars and kind of did the process the same way that I did the tomatoes. And it was a big mistake because I should have been using a pressure cooker and I didn’t know that. Basically, I poisoned myself. During the canning process, I took the jars out of the boiling water. And put them on the counter and they were cooling down and a couple of lids popped. And I’m like, ah, darn. And so I screwed those lids down and put those ones into the refrigerator and said, okay, eat those ones first. And I put the rest in the cover. A week later, I had given some to my mom. A week later, I ate it. And it tasted fine and it was good, it was delicious. I had smoked it, smoked the fish ahead of time.
[00:07:18] Narrator It tasted fine. It smelled fine. Two days later after he ate it, everything changed.
[00:07:25] Michael Christy Boil, you know, did it in the hot water bath treatment. And then ate it a week later. And then two days after that, I woke up with slurred speech and I didn’t know what was wrong. I thought I had a stroke and I was scared. Didn’t know what to do so I called my mom first and she’s like, call an ambulance, get to the hospital right away. I went to the the hospital and my condition was deteriorating all day long. It just got worse and worse and my throat was starting to close up on me and I started gagging on my own saliva. You know, like I couldn’t swallow. One of the last things I remember doing was kind of being on all fours in the hospital, you know, kind of on my hands and knees, trying to use gravity to clear my throat so I could breathe. And that’s when I lost consciousness. The next thing I know is in a dark place. And I saw the light and a voice came to me and said, this is it, Mike. Do you want to live or die? And I said, No way, I’m not gonna effing die. And then I opened up my eyes and I was in the operating room with doctors and nurses frankly running around me. And I just closed my eyes again and I guess. Like four or five hours elapsed, and I had been airlifted to a different hospital. I was intubated and paralyzed. My eyes was shut. Everything or nothing worked in my body. I was paralyzed and I couldn’t move or anything.
[00:09:19] Narrator Even once Michael was in the hospital, doctors didn’t know what they were looking at.
[00:09:24] Michael Christy I was just stuck in my own body. The next day, I started being able to move my finger a little bit. And so I started trying to communicate. My family was there, and I started trying to communicate by tracing letters with my finger. And I could move my right foot a little bit. I could moved from side to side, which was a no, and then up and down was a yes. They didn’t know what was wrong with me. I didn’t even know what’s wrong with me. I had one doctor that said he thought it was Guillain-Barre. It just didn’t make sense to me. This other second doctor came in and said, is there any way it could be botulism? Oh, by the way, the only thing that didn’t work on me was my brain and my ears. I could hear and my brain functioned. And when I heard the word botulism, the light bulb went off for me and I knew it was the tuna that I’d eaten a few days earlier. And I had taken some cooking classes 30 years earlier and I had taken a food safety class and learned about different food borne illnesses. So that was a great thing that I knew what botulism was. Because I knew right then that that’s what it was. It was tuna. But that doctor, because my brother was with me, with the doctor there, and he was there on the day that I was canning, he mentioned, he’s like, is there any way it could be that tuna, Mike? And my foot was just shaking, you know? Like, yes, yes yes, that’s it was, it’s the tuna. And he pointed out to the doctor, like, look at his foot, his foot is shaking, you know, it’s going up and down. So they sent the CDC to my house to go get the tuna. Even prior to them figuring it out for sure that it was botulism, he ordered the anti-toxin for me, which was a pretty, you now, put himself out on a limb because like, it was, I think at that time, it was like 35 or 40,000 bucks to put that in me, but he did it and ordered it. And even before they got the diagnosis that it was botulism, I had had that spinal tap into me, which saved my life. I stayed in the hospital in the ICU for about 15 days. Wasn’t a pleasant experience.
[00:12:18] Narrator That’s not a rare situation. Jane Talkington has been over a decade studying exactly why botulism is so often missed, even now.
[00:12:27] Dr. Jane Talkington Botulism is a diagnosis of exclusion. It always has been. You have to look at the symptoms that present and make a decision based on that. So now, when people go in with this crazy list of neurological issues that really can’t be tested very well, doctors have to make this differential diagnosis like House MD, like, oh, it could be 20 different things and let’s just go through and start eliminating these. There’s really not a reliable blood test, certainly not in the hospital because It requires taking a sample of the blood, sending it to the CDC using white mice in a controlled setting and using an antitoxin to test to see if your blood is carrying the toxin or not. And people that have done that, the blood is taken so much later than the illness that it’s no longer circulating at a level in the blood that shows up on the mouse bioassay. So for foodborne, they can take a stool sample and more likely to find it in there. But testing is very hard and not obvious. I talked to one botulism patient that was forcibly escorted out of the ER because they thought she was faking. And on the drive home, half of her face fell. It was paralyzed on one side. So they whipped around and went back to the ER. That time they looked at her and they said, oh, you’re having a stroke. So it’s just so hard to know what you’re looking at. I think the doctors are trained to look at the top four symptoms of botulisim and it is more like 60, 70, 80. And strange is that when we would, 10 people would go to dinner and all eat the same food. One person would be sick the next day. Another person would be sick on day 10. So the onset of the illness varies greatly. And the symptoms change. So that one person that has immediate symptoms, they may be suffering diarrhea and the other person suffering constipation. Well, that’s just a snapshot. So if you flip it, 12 hours later, the constipation is now diarrhea, the diarrhea is now constipation. There’s vision problems that come and go that resolve, like why would it be there at two o’clock and not there at six o’ clock? Sometimes these patients are considered having psychosis, and they’re put in a mental institution because every time you walk into the examination room, there’s a different set of symptoms, right? And this drives doctors crazy. If you have those 10 people at dinner go to 10 different ERs, they will absolutely not get diagnosed. They’re too different. If they all present together in the ER, it creates a very strange picture, and obvious enough that they can diagnose botulism.
[00:15:03] Narrator In one 1985 outbreak in Vancouver, the first wave of patients went misdiagnosed for months. It only became clear once a mother and daughter showed up together with the same symptoms. One personal loan doesn’t looks like an outbreak. It just looks strange. The same instinct that makes people distrust store-bought food and try to prepare things themselves, canning, home formula, home remedies, is often exactly what puts people in this position in the first place. Doing it yourself is often the more dangerous choice.
[00:15:37] Steve Abrams Just be very careful of people who are so concerned about things like food safety, government regulations, that they give advice that’s actually more dangerous. And I’ll give you this best example of that, is people are concerned about the safety of infant formula who say to make your formula at home. Formula made at home is much, much less safe than any infant formula that’s manufactured in a rich facility up to eight and everly by orders of magnitude. And we have real examples of people making homemade formula or cause severe harm to their babies. So don’t let concerns which are legitimate and families have make one take an alternative that might be advocated by some that really is much less safe than the one is. It’s better to advocate for improved safety standards as to go away from the existing safety standards and kind of create your own pathway, which is often much worse.
[00:16:29] Narrator Steve Abrams is a pediatrician who spent decades studying infant nutrition and food regulation. As he points out, botulism in infant formula has been an issue. But creating your own is far more dangerous. Despite this danger, there is a cure for botulisim today. A century ago, there was no antitoxin and no real understanding of what botulism even was.
[00:16:55] Dr. Jane Talkington In the early 1900s, botulism diagnosis was a death sentence. It carried a 60 to 70 percent fatality rate. Some of those who lived wished they hadn’t. The recovery was long and torturous. Others would walk away completely unscathed. In some outbreaks, every single person died. Complete tragedy, an entire family wiped out. 10, 15 people just gone within a week. In other outbreaks, you might see one person out of 24 become a fatal case and the others recover, it just depends on the dose of toxin. It’s not unusual to see an entire family wiped out from nursing babies who would chew a green bean at grandma’s dinner table all the way to the oldest grandparent. Albany, Oregon in 1924, all the whole family had died from grandma’s green beans.
[00:17:45] Narrator An entire family gone from a single meal. And even after an antitoxin existed, getting doctors to trust it and use it in time was its own battle.
[00:17:56] Dr. Jane Talkington The most shocking case to me was in 1931. The antitoxin had already been used on humans. It was no longer experimental. And there was an outbreak in Grafton, North Dakota, population 3,000. And there was a party at a farm, and everyone drank and ate the pea salad. And a young man named Winfield Ware was a little sick, but not very sick. He watched 12 of his friends die, attended funerals, gave interviews to the epidemiologist, talked to the doctors, did all the investigations with the authorities, but towards the end of the week he was feeling very poor and people said, well, it’s just Winfield Ware. You know, he’s kind of a blowhard. He’s 23 years old. He likes attention. Everyone else has died and he’s just faking this to get attention. So they called him windy. And that day, Windy met somebody who told exaggerated stories, spoke too long, made up things to just get attention. So they called him Windy Ware. And they had the antitoxin within a week of the outbreak. They wouldn’t give it to him. They put him in the hospital for observation just because he was so insistent that something was wrong. He visited with his dad all day on Saturday and he just seemed to be puny, a little sick, but certainly not with severe botulism. So they withheld the antitoxin and he died.
[00:19:21] Narrator Back to Michael. One year after nearly dying from a jar of tuna, he ran up a mountain.
[00:19:27] Michael Christy And I go home like, like, you know what, I’m gonna, I’m going to go, I gonna go home. So I ended up going home. They pulled the trach out, they pulled the feeding tube out and off I was. And I made it a thing, a goal of mine to walk out of the hospital on my own power. And I did, they tried to give me the walker and they tried give me crutches. They tried to get me a cane and I refused all of it. I’m gonna walk out on my own power. A week or so later, I had to meet with a doctor from the disability department or something so I could get benefits. And he was interviewing me and and and most of the doctors that I talked to said the reason that I lived was because I was in good shape when I got sick. It was in October. And that’s usually the end of summer. I’ve been running a lot. I always consider myself an athlete. They say, well, that’s great that you were in good shape. It probably saved your life, but you have to come to grips with the fact and accept the fact that you’re never gonna run again. And I nodded my head, ended the session with him, walked out of that place and said, like, you don’t know me. You don’t me, I’m going to run again! I ended up on my year anniversary of being in the hospital, I ended up the local mountain here that’s closest to San Francisco and Marin County is called Mount Tamalpais. Pretty big, 2,300 feet. It’s not a huge mountain, but it’s a pretty steep climb. And I ran to the top of that thing without stopping and touched the tower that’s on the very top of it and kind of raised my hand like rocky. And felt like I conquered it.
[00:21:29] Narrator Michael has made a full recovery, but not everyone gets Michael’s ending. For some survivors, botulism never fully lets go.
[00:21:38] Dr. Jane Talkington I think what surprised me most about botulism is the long-term impacts of it. Even people that got the antitoxin will report there are some symptoms of botulisim that permanently damaged them. They didn’t resolve after 30 or 40 years even. There’ll be vision problems that linger. They have to wear dark glasses inside. There’ll be a hoarse voice. One lady I said, is your voice always been that deep voice? And she said, oh no, this happened the week of botulism and it never resolved. And this is my new voice for the second half of my life. I think that surprises people. She introduced me to this word called botchy. She said, there’s days where I feel like I am botchy, I can’t get out of bed, I feel horrible, I feel I’m going to die. I said really, like 40 years later, that’s terrible that you experience botulism day one again. How often does that happen? She said about once a month. Like if I play too much golf, if I exert myself, if I don’t sleep right, that perfect storm of weakening your system, she’ll be down for two or three days and then she’ll pop right back up. But imagine 10 times a year having the symptoms of botulism and thinking, oh my gosh, is this going to be another trip to the ER? Am I going to be on the ventilator? She’s just gotten used to it. It’s a way of life now. And that’s not documented in the literature because I haven’t written it up.
[00:23:08] Narrator Two people can eat the same meal and end up with completely different lives afterward. And when something this rare and this poorly understood happens to you, it turns out the official channels aren’t always where people find answers.
[00:23:22] Steve Abrams You get a proliferation of sites and influencers and the like that make claims about these types of things, but often based on no data, or very minimal data, and it becomes hard for parents and others to really sort that information out. We have what I call reliable places, reliable sites. I think the best one for children is the American Academy of Pediatric Advice. I admit to a bias there. I’m the co-author of the AAP textbook on pediatric nutrition. And also help them edit their healthychildren.org website, which provides advice, but this advice doesn’t come from me. This advice comes from the 60,000 or so odd members that provide that type of advice. So I hope that people can trust their pediatric caregivers or pediatricians and other groups, the knowledge, the dieticians, the pharmacists and the like to give them good advice, but it can be extraordinarily hard for families to sort that information out right now.
[00:24:21] Narrator Steve Abrams was talking about nutrition advice broadly, but this same instinct to go looking for someone who actually understands your situation is exactly what built the community Jane Talkington now runs.
[00:24:33] Dr. Jane Talkington There was a woman by her husband’s bedside in ICU last year, and they didn’t know what he had, and she kept saying, I think it might be botulism. They said, oh, no, it’s not possible. And so they just went round and round, and he was just, he was circling the drain, getting sicker and sicker by the minute. And she bought my book on Amazon. She read it, and then she said, I am positive this sounds just like my husband. And she went to the governor of the state. She got him transferred to a different, different hospital, and those doctors didn’t make fun of her for doing her own research. And they understood, yeah, we agree with you, we think he’s got botulism. They secured the antitoxin, he’s alive today. Because she didn’t have medical training, but she could read stories. So she read my stories, I’ve got 120 cases. She saw botulisms across the spectrum of possibilities, where sometimes it looks like this, and sometimes it look like that. And to her, she said, I see my husband in these stories. This matches. And that’s why she was able to get him the antitoxin and save his life. They’re now part of the botulism support network too. So they don’t feel all alone. My question to her was, what could I have done to make this information more readily available to you? You had to find it on Amazon at three in the morning and order the book and wait for it. What could I have done? And so that’s why we have this botulism Facebook page.
[00:25:59] Narrator Steve Abrams calls for more structure and stronger safeguards for consumers, especially parents.
[00:26:05] Steve Abrams I think we need clear guidelines. What is safe, what isn’t safe? What’s the maximum amount of heavy metals that can be [00:26:11]in infant formula? [0.1s] How often are companies required to test it? How should families look at things in terms of the whole diet? We need a real effort and also an approach to what is ethical marketing, what’s non-ethical marketing in terms of making statements that are not factual. I think, we need the government to take a stronger regulatory role. I wish that the free market could just handle everything, but it doesn’t.
[00:26:37] Narrator Until that changes, the most reliable safeguard is still the simplest one. The food that got Michael Christy sick didn’t look dangerous, didn’t smell dangerous, and didn’t taste dangerous. His advice all these years later is simple.
[00:26:53] Michael Christy I would say check all your canned goods. I went through my cupboard and almost every can that I had was expired. Taking a chance with food, it’s not worth it. I’m very lucky to be alive. Not only did I get pneumonia once, but I had it like three other times in the hospital. You don’t want to mess around with food and I barbecue fish, I will eat it raw. I will not can it. You know, if you have any questions about any kind of food, it’s just not worth taking the risk of eating it. How much are you? You know what, I don’t wanna throw this out yet. I’m gonna eat it, it smells okay. This tuna didn’t smell bad. It didn’t taste bad, it was tasted good. And I didn’t know that I was poisoning myself and giving myself botulism. I’m just really lucky that I’m still alive.
[00:28:03] Narrator Thank you for listening to Countermeasures. If you enjoy the show, please consider leaving us a rating or review. Thank you to our guests for taking the time to share their insights. If you found this episode insightful, please share it with colleagues and friends. And don’t forget to subscribe so you don’t miss future conversations.