Science Vs - Lyme Disease: How Scary Is It?

Episode Date: June 15, 2018

This week, we’re entering the Lyme Wars. We’re asking: what is Lyme disease? How do you get it? How do you know you have it? And if you get infected, are you stuck with it forever? To find out we talk to neurologist Dr John Halperin, neuropsychology researcher Dr Kathleen Bechtold, and a Lyme patient we’re calling Emily. Check out the full transcript here: http://bit.ly/2DZhQxo Selected readings: About the culprits behind Lyme Disease The best summary on how well the Lyme tests workKathleen's study about patients suffering from Post-Treatment Lyme Disease SyndromeA most helpful primer on Chronic LymeTwo controlled trials showing that long-term antibiotics use doesn’t help zap out lingering Lyme symptoms  Credits:  This episode has been produced by Shruti Ravindran, with help from Wendy Zukerman, along with Rose Rimler and Meryl Horn. Our senior producer is Kaitlyn Sawrey. We’re edited by Blythe Terrell. Additional editing help from Caitlin Kenney. Fact checking by Michelle Harris. Mix and sound design by Emma Munger. Music written by Bobby Lord and Emma Munger. Recording assistance from Daniel Woldorff, Susan Valot, Davis Land and Julian Weller. For this episode, we also spoke to Dr John Aucott, Dr Brian Fallon, Dr Allen Steere, Dr Paul Lantos, Dr Adriana Marques and Dr Alan Barbour. Thank you so much. Thanks to the Zukerman Family and Joseph Lavelle Wilson. And our favorite songstress Rachel Ward. Learn more about your ad choices. Visit podcastchoices.com/adchoices

Hi, I'm Wendy Zuckerman and you're listening to Science Versus from Gimlet Media. This is the show that pits facts against freaky diseases. On today's episode, Lyme disease. People say it's scary, mysterious, and according to the Centers for Disease Control, there have been more and more people getting infected, with roughly 300,000 cases in the U.S. each year. And even around the Gimlet office, so many people seem to have these Lyme horror stories.

I woke up and I could not move half of my face. I can't move this corner of my mouth. I can't flare my nostril over there. I can't move this corner of my mouth. I can't flare my nostril over there. I can't quite blink. It feels like Lyme has all these vague, weird symptoms. Drowsiness, tiredness, achiness. It's almost like modern-day polio, where you had it as a kid,

but then your entire life is affected by it. She started seemingly going kind of insane. It's endless. It's like never really gone, but also never really there. Wait, what? Lyme disease makes you go insane? You're going to have this forever. So there are all these rumors around about this terrible disease.

And part of the reason for this is that when you go online and try to get reliable information about Lyme, you stumble into this big fight where patients say they have this disease and it won't go away. And then doctors say, no, you don't have Lyme. And it's gotten so ugly that it's been called the Lyme Wars, with patients on one side and mainstream medicine on the other. And amidst all this fighting, some people are just really sick. On today's show, we're going to enlist in the Lyme Wars to find out how scary this disease is. And can you really be stuck with it forever? When it comes to Lyme disease,

there are lots of opinions, but then there's science. Science vs Lyme disease is coming up just after the break. Bumble knows it's hard to start conversations. Hey. No, too basic. Hi there. Still no. What about hello, handsome?

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So our first question is just, what is this? And how scared should we be? We sent our reporter, Shruti Ravindran, down the Lyme rabbit hole to see if things would get curiouser and curiouser. And her first stop was interviewing this guy. Tell me your name and what you do. Dr. John Halprin. I'm a neurologist. Oh, can you say, like, my name is?

Pushy. My name is Dr. John Halprin. I'm a neurologist. John is a doctor at Overlook Medical Center in Summit, New Jersey. He's been treating people with Lyme disease for more than 30 years. And he says if you've got Lyme disease, you can blame it on one tiny critter. The only way you can track it is by a bite of an infected specific type of tick. This specific kind of tick hangs out on deer. And when this tick is carrying a bacteria called Borrelia and bites you,

it can infect you with that bug. And it's that bacteria that can give you Lyme. Once you get Lyme, it can give you a fever and some nasty headaches, a bit like having a yucky flu. But it can also give you these three very particular things. One is this big, red, angry rash that's shaped like a bullseye. And what's unique about it is it's this red blob that just grows day by day by day.

The biggest one I ever saw personally was on a friend of my son's when they were little kids, and it went from his armpit to his hip. Wow. The second sign that you've got Lyme is pain in your joints, particularly in the knee. It can really swell up and get puffy. But the craziest thing that this bacteria can do is paralyze half your face, and it can happen in around 10% of Lyme patients.

If Lyme goes undiagnosed, it can start infecting your brain, giving you these vague but real symptoms like a terrible fatigue and problems with memory or concentration, which some people call brain fog. Light and sound bothers you, your neck can be stiff and you feel pretty sick. So this can be a really nasty disease. But our next question is how do you know if you've got it? Because if you've got those telltale signs, that bullseye rash, the swelling knee, or if half your face freezes, it's pretty easy to spot. But what if your joints are a bit achy and you've got fatigue and brain fog? Could Lyme be to blame?

How could you know? Well, it turns out there's a lot of confusion out there. You never exactly know if you have it or not. I got tested for Lyme disease multiple times and I would get these very ambiguous readings. And then an infectious disease doctor saw me there, and he was like, if the Lyme disease tests come back negative, I'm going to have them do it again. So it was, like, so nebulous. Is it nebulous?

Well, if you've had those vague symptoms, the aches, the fatigue, the brain fog, for months, but you didn't have those other telltale signs, like the bullseye rash, it's unlikely that you have Lyme. But there is also a test you can take. Now, there are some sticking points to the test, and it seems like the internet grabs hold of them to make this more confusing than it needs to be. So we're going to walk you through it.

The Lyme test that you get at the doctor, it's actually two tests. Basically, each test on its own isn't very accurate, but put them together, and it is very good at picking up Lyme disease. It can pick up Lyme in over 95% of the people who have it. 95%! So it's not perfect, but still, it's really good. What you have to know about this test, though, is that it's not trying to detect a nasty live Lyme bacteria kicking around your body. Instead, it's picking up your body's reaction to this infection, which can take a while to build up. And that means that it can take about a month for this test to work well. Before then, it's unreliable.

The other sticking point is that the tests can't tell you when you got sick with Lyme. They can only tell you if you've ever been infected, not if you have Lyme disease right now. Because again, the test is just seeing whether your body had an immune reaction to Lyme at some point. Okay, so what do these sticking points mean? Is this test good or not? Well, if you've been sick for a while and the test is negative, you probably don't have Lyme.

If the test is positive, it's a bit fuzzier. You might be infected with Lyme now, but possibly not. It's a bit hard to say for sure. So, say you've got Lyme. How scared should you be? Can you cure it? Or are you stuck with this disease forever? Well, this takes us to our first

big battle in the Lyme Wars. On one side, there's this story that mainstream science insists on. That is, Lyme is easy to treat with a short course of antibiotics. John, the doctor we've been speaking to, is part of this mainstream thinking. Once it's been treated, you don't get these symptoms. So there's an end in sight? Yes. So doctors like John say you take your meds, you should get better. Every now and then, people might need another round of antibiotics, but not usually. But then there's the other side of this battle.

A group of patients who say they've had Lyme took their antibiotics and are still really sick. So if you go online, you'll find these really tragic stories of people who say they've been sick with Lyme for months or even years. They say they have this condition called chronic Lyme. But the medical establishment doesn't like this idea of chronic Lyme. They say these patients probably have something else. It's just a misdiagnosis that's, you know,

they got swallowed into this vortex of chronic Lyme and they've been so focused on that that they've not found out what's really going on. But for some patients, when they hear this, that their disease is something else, that they've been sucked into a chronic Lyme vortex, it can sound like doctors aren't taking them seriously. Pop singer Avril Lavigne actually went through this experience,

and she talked about it on Good Morning America. And they were just like, why don't you try to get out of bed, Avril, and just go play the piano? It's like, are you depressed? This is what they do to a lot of people that have Lyme disease. They don't have an answer for them, so they tell them, like... They tell them, like, you're crazy. OK, so Avril might sound like a bit of a whinger,

but her story is pretty emblematic of the stuff you'll find online. People are sick, yes, and they are suffering. But is Lyme really to blame? If the doctors say this chronic Lyme isn't a thing, these people probably have something else. But once we started looking into all of these stories, it felt like you couldn't write them all off so easily. Because it seemed like some people's symptoms

had to be connected to their Lyme infection. One person's experience really stood out to me, so I went out to meet her. Hi, how are you? Good, how are you? This is Emily, and that's not her real name, by the way. What happened to her is so contentious, she didn't want to be identified.

How would you characterize where we are? We're in one of the world's tiniest airports. I like to say that I've had zits bigger than this airport. Emily is an academic. She studies sociology. And a couple of years ago, Emily had finished her PhD and was a bit stressed out looking for her next move. So she headed out for a long hike in the woods in North Carolina.

I remember seeing a lot of deer and thinking, oh, how beautiful. It's like a Disney movie. And in hindsight, maybe not so much. Yes, this fairy tale took a dark turn when Emily noticed a big red rash, the classic lime bullseye rash. And she got this terrible fever. Pretty quickly, I started to feel like I had the flu. Like, hot and cold. My knees started to hurt.

Emily had some of the hallmarks of Lyme. The rash, the sore knee. So her doctor prescribed her the antibiotics that you get for Lyme. And 10 days later, it was the holidays. We're driving down to see my family for Thanksgiving. And I remember taking out the pill. It was a peach color. And I was like, oh, this is my last one.

Thank God. So Emily finished her treatment and was starting to feel better. But a few days later, the symptoms were back. And they started getting worse. She tried another round of antibiotics, but that didn't help. After several months, Emily went from being an athletic, strong woman to someone who was so tired she could barely function. She had what she called a bone-deep fatigue. A nap's not going to fix this. Just, you don't have any energy. To go from feeling very athletic to, at my lowest,

not being able to make the walk from my car to my house after getting groceries. And I would sit in my car and I would see the door and think, okay, you know, how long do I need to sit here before I can get up the energy? And then there was this terrible pain. I mean, it was like a searing hot ice pick stabbing my joints constantly. My knees, my hips were in agony, my spine, my neck was constantly stiff. I couldn't think straight. At this point, her regular doctor didn't know what to do. It seemed like no one did.

Nobody can tell me what's happened to me. Nobody can tell me why. All I know is how I feel. And the people closest to me were really worried. And I got worried. And what was your worry at the time? I guess that I might die. I couldn't imagine feeling that way unless something really horrible was happening. No one could explain to me exactly what was happening.

I was... a mess. So what was happening to Emily? Why was she getting worse after she'd been treated? Maybe this disease is more scary than we've thought. Science is only just catching up to give us some answers. And they are coming up after the break. Welcome back. So we've just heard from Emily who was treated for her Lyme but suddenly her health slid downhill and she got worse and worse, feeling this terrible fatigue.

And because this happened, it landed her in the middle of the Lyme Wars, where doctors didn't know what to do with her or how to help her. Our reporter, Shruti Ravindran, is helping me tell this story. If you look online, some people would describe Emily's illness as chronic Lyme. But remember, the medical community doesn't endorse that condition. So if Emily doesn't have chronic Lyme, then what is going on? Well, scientists are just starting to understand this. Hello, it's Dr Bechtold. Hi, this is Wendy calling.

Hi, Wendy. This is the very upbeat Kate Bechtold from Johns Hopkins School of Medicine. And Kate would have never expected to find herself in the middle of the Lyme Wars. She used to work in rehabilitation as a psychologist, helping people with serious injuries. Traumatic brain injury, spinal cord injuries, burns, amputations. And about a decade ago, Kate started noticing that certain patients were coming in with these terrible symptoms, kind of like Emily's. I would take patients who said, hey, I'm suffering with fatigue and I've got some illness nobody seems to understand, or my thinking, it just seems like I can't think myself out of a box sometimes. Lots of people describe it as brain fog.

And she didn't know what was wrong with them, except that when she looked into their medical records, she saw that they'd all had Lyme disease at some point. And that surprised her. Lyme disease? Well, wait a minute. What's this? What's Lyme disease? Kate thought maybe the Lyme is making these patients sick. But at the same time, these symptoms, fatigue, pains, they're so common.

Maybe the Lyme infection was just a coincidence. Everybody has pain. Everybody is tired. So how is this not the normal hum of what we all have in the general American population? To give you a sense of what Kate is talking about when she says the hum, one in five Americans say they feel pain most days. That's according to the CDC. So are Kate's patients really suffering because of Lyme? Or are they just kind of like everybody else? To start figuring this out, Kate and her colleagues followed about 60 Lyme patients

who had gotten treated for the disease, and then they compared them to people who had never had Lyme. They looked closely at the Lyme group and they tried to find out, did they have more pain? More fatigue? And Kate told us, on average, yes. Lyme patients are at a higher risk for having fatigue, pain and brain fog, even after treatment. There's something different going on here. It's more than the average hum.

There is something here. And, you know, that was a name of one of our papers. Is there something here? And at the end of the paper, we said yes. And Kate says it took a while for the scientific community to get on board. We had a hard time getting our research to be accepted, it just was, well, is this really science? Is this really a disease? It was challenging. Part of the reason that this was challenging was because Kate's team didn't study that many patients.

Plus, other researchers were finding results that were different from Kate's. But still, a paper from Nature Reviews published just a few years ago said that when you look at all the evidence, there does seem to be something off with this group of people and that some symptoms of Lyme disease can stick around even after you've been treated. In fact, scientists have now given this condition a catchy name. It's so catchy

that we can't wait to hear Avril Lavigne's new hit single about it. It's called Post-Treatment Lyme Disease Syndrome. Post-Treatment Lyme Disease Syndrome. Not common, not that widely known. Post-treatment Lyme disease syndrome. I know, right? Why meds, but my symptoms are not a thing. Anyway, the Centers for Disease Control acknowledges that this syndrome is real, and it's when you have really bad symptoms for at least six months after you've been treated for Lyme. And Kate says that this is what her patients had, post-treatment Lyme disease syndrome. The acronym is PTLDS, which doesn't come easily off the tongue.

No, it doesn't. So instead, we're going to call it Schlemazel syndrome, what you've got when you're still very sick after a while, after you've been treated for Lyme. You got it, Shruti? Uh, OK. It's Yiddish for unlucky. OK, but here's what's weird.

This syndrome sounds pretty much like chronic Lyme, the thing that the medical community doesn't like. The big difference is that the internet has co-opted the term chronic Lyme to mean a gazillion different things. It's become a catch-all for anyone who's tired, has aches and pains, or brain fog, even when there's no evidence that they ever had a Lyme infection. Okay, so bottom line? For a small subset of people, after treatment, the symptoms persist despite getting the treatment course

with antibiotics that is recommended. Here's what's important though. Although Schlemazel syndrome is scary and does exist, it's not common. The estimates vary depending on which doctor you talk to and which studies you read, but most clinical trials find that between 1% to 10% of people who get Lyme disease still have symptoms months after getting treated. 1% to 10%. So it's rare, but it's not unheard of. That's why it's a schlamazel. And this brings us back to our patient Emily. She probably falls into this schlamazel. And this brings us back to our patient Emily.

She probably falls into this schlamazel syndrome bucket. The stamp of approval from the CDC was great for Emily. Because when patients don't have labels, this is the message they can feel like they get from doctors. Well, then you just must be crazy. And that's, nobody wants that. That's humiliating. It's dehumanizing.

And while a label was nice, Emily just wanted to feel better and get some real treatment. And that takes us to our final question for today. What can doctors do for patients like Emily? Can you treat Schlemazel syndrome? Well, there is a controversial treatment that a few doctors prescribe, and it's this. Taking a ton of antibiotics over months and sometimes even years. Some patients are prescribed pills, others hook themselves up to machines that deliver antibiotics straight into their veins through an IV drip.

And when Emily went searching for help, she came across this doctor online who believed in this treatment. Emily says the doctor prescribed her buckets of pills. Basically, what she did was bombard me with antibiotics. For Emily, all these drugs didn't help. In fact, she got worse. She started feeling nauseous and could barely keep her food down. So during this period of my life, all I could eat were these frozen buckwheat waffles. And if I never see a toaster waffle again in my life, I mean, just because I'm like vomiting up toaster waffles multiple times a day.

After a while, her never-ending illness almost became a joke. Emily would talk with her best friend about it. It was funny. At one one point she was pregnant when I was really sick, and we talked about our parasites and how hers was going to grow up to be a really good person, and hopefully all mine would die. That's dark. That's kind of my sense of humor, though. Sorry. Jokes aside, though, is taking a lot of antibiotics over a long period something that can help? Our Johns Hopkins researcher Kate Bechtold has looked into the studies on this and she says, right, well, mainlining all these antibiotics is a really bad idea. There's not solid evidence that long-term, month-after-month treatment with antibiotics is effective for the general population exposed to Lyme disease. Long-term antibiotic treatment does not, on the whole, fix this problem. Is that fair? Yeah, I think that's fair.

There have been several trials now where patients were still sick after getting treated for Lyme and then they got put on antibiotics for at least a couple of months. And on average, they did no better than those on a placebo. With researchers ultimately concluding that this idea of taking antibiotics for months and months, this is bunk. And you might say, well, let people do whatever they want,

if it makes them feel better. But there are risks here. Being on antibiotics in the long term can have nasty side effects like nausea and diarrhoea. And in hindsight, Emily thinks that the pills made her feel much, much worse. And she realizes that the doctor who prescribed them to her

was in a fringe group. I trusted her. And you would think that I might know better because I'm a healthcare researcher, but what you don't see in the journal articles is that when you are incredibly sick and no one else is handing you answers, you get really desperate. I was so desperate. I would have tried anything. If she had handed me a live insect, I would have been like, where's the ketchup? You know, like, hand me some ranch dressing. I'm going to eat that insect. And the thing is, this idea of mainlining antibiotics isn't thought to work because

these drugs kill bacteria. And Kate told us that the best evidence we have says that these patients are not still infected with Lyme. That is, it's not the bug that's making them sick. The research to date does not suggest that there's a bacteria living inside the person and still wreaking havoc. We don't actually know what is causing this syndrome. But one of the front-running ideas is that the Lyme bacteria triggered some kind of messed-up immune reaction, which might lead to ongoing inflammation, causing these vague but serious symptoms in people like Emily. And basically, at the moment, there's no cure, no quick fix. So when these patients come to Kate, all she can do is give them tools to cope with their symptoms. What kind of things are we talking about here to help with the fatigue?

Like coffee? Cups of coffee. Unfortunately, no, no, that's not it. It's more like typical rehab stuff. Exercises and cognitive behavioural therapy, a slow and steady approach, which Kate says can help ease people's symptoms. So when it comes to science versus Lyme disease,

does it stack up? There is a disease called Lyme, and you can get it when you're bit by a tick carrying the Lyme bacteria. Now, for the most part, it's hardly the world's scariest disease. It can give you this weird rash, and over a few weeks, half your face can freeze up.

But if you take a short course of antibiotics, the majority of people can beat this infection. For some, though, a small group of people, they may still have problems after they've been treated. We don't know why this happens, but there is one thing we do know. There is no good evidence that taking antibiotics for months and months on end helps. And these drugs can have some nasty side effects. Emily eventually stopped taking those antibiotics, and after a while, the worst of her symptoms went away.

She's not sure why, and neither is science. Do you recognize the moment when you look back, like when you felt like a person again? This is very silly. There was, like, this friend of ours who was a photographer and he was like, I think it'd be fun to do a photo shoot. He was doing this with all of his friends. And I remember looking at the photos that he took and thinking, oh, the pain is not in my eyes anymore. I can look at those photos and I can tell that I feel good again.

That's science versus Lyme disease. And this parody of It's Complicated is written and performed by the very amazing Rachel Ward. She hosts the podcast Chompers. You've got to check it out. Chill out. You've had fatigue before. Vague aches and creaking in your joints. But now it probably isn't. Probably not. But could it be? Post-treatment Lyme disease syndrome Not common, not that widely known And you're probably not gonna find yourself Coming down with it

But there is a chance that your luck is bad You're the poor schmuck, the one that gets stuck With lingering pain and symptoms remain for weeks Or years I'm the rare case where my symptoms aren't terminated This episode has been produced by Shruti Ravindran with help from me, Wendy Zuckerman, along with Rose Rimler and Meryl Horn. Our senior producer is Caitlin Sori.

We're edited by Blythe Terrell. Additional editing help from Caitlin Kenny. Fact-checking by Michelle Harris. Mix and sound design by Emma Munger. Music written by Bobby Lord and Emma Munger. Recording assistance from Daniel Waldorf, Susan Vallott, Davis Land and Julian Weller. For this episode, we also spoke to... Thank you so much.

And thanks to the Zuckerman family and Joseph Lavelle-Wilson. And if you're in New York this weekend, you should come and see us performing live at Gimlet Fest. Yes, we're going to be performing at 12.30pm June 17th. Get tickets at gimletfest.com. Next week, we're looking at UFOs. Could aliens really be out there? And it's this sort of classic,

oh my goodness, you do see that light, but the controller says there's nothing on the radar. I'm Wendy Zuckerman. Back to you next time.