New documentary explores Lyme disease controversies

Every year nearly half a million people in the U.S. get Lyme disease, and most of them face symptoms that last a few weeks after the tick bite that transmitted the disease. But for some patients, the symptoms can last much longer. The medical community has been slow to recognize this form of long-lasting Lyme disease and to find treatments for it. Winslow Crane-Murdoch, the co-director of a new documentary about Lyme disease, joins us to talk about his film “The Quiet Epidemic,” and the history and controversy surrounding the medical treatment of the disease.

The following transcript was created by a computer and edited by a volunteer:

Dave Miller: From the Gert Boyle studio at OPB, this is Think Out Loud. I’m Dave Miller. Nearly half a million people in the US get Lyme disease every year. Most of them will face symptoms that last for a few weeks, say, after they’re bitten by the tick that transmits the disease. But for some people the symptoms can last much longer, as in months or years. And the medical community has been agonizingly slow in recognizing this form of the disease, let alone finding effective treatment for it. The Portland based filmmaker Winslow Crane-Murdoch is a co-director of a new documentary about Lyme disease. He has also lived with chronic Lyme himself.

The documentary is called “The Quiet Epidemic.” It’s being shown tomorrow night at 7:30 at Portland’s Hollywood Theater. Winslow Crane-Murdoch, welcome to Think Out Loud.

Winslow Crane-Murdoch: Thanks for having me.

Miller: The person you focus on throughout the movie is the patient whose story is a prism for a lot of this, a teenager named Julia Bruzzese. Why did you want to focus on her story?

Crane-Murdoch: We met Julia, and her father who is also a big part of the story, her whole family is a big part of the story, at the Lyme disease doctors office that my co-director and I met at in upstate New York. Julia was blessed by Pope Francis when he came to New York City in September of 2015, I think, and she became this sort of viral news sensation. And on that broadcast, she said “I have a clinical diagnosis of Lyme disease, but we don’t know yet what’s wrong with me.” And the doctor that I was seeing in upstate New York actually reached out to her and offered her free treatment. And so she came up there, her father came up with her, and I met them at an appointment that I was at.

I think right away we realized that Julia was a story that we wanted to follow. I think that she showed so much grace in her fight against this disease. And then also her family stood up for her in this way that was really beautiful, and represented I think what it means to have support, and how you heal with that support.

And we were really lucky that early on, I think, they recognized the power of media too. Julia’s family was pretty close to selling their house before this all happened. And then once that story went viral, someone set up a GoFundMe for them, they raised a ton of money and they were able to stay in their home, and they were able to pay for Lyme disease treatment for at least an extended period of time. So when we came to them, they had already been talking to the news, and they knew that this was something that could also help them.

Miller: How representative is Julia’s experience among people who have Lyme disease symptoms that go on and on? And in particular, the way doctors responded to her.

Crane-Murdoch: I think that Julia’s symptoms are definitely at the far end of the spectrum. She’s unable to walk and she’s been unable to walk for a number of years, and she also has all these other sort of multi system problems that affect her. We chose her knowing that this was sort of an extreme example.

I think that what’s not unique about Julia’s story was the way in which her case was written off. She ended up in hospitals in the summer of 2015 unable to walk, unable to feel her legs, unable to feel her arms, she was blue in color, she had a crazy fever, she had so many things that were going wrong. And in the hospitals at first, they realized that this girl is very sick, and they took it quite seriously and they tested her for everything, everything came back negative. And what they turned to was conversion disorder, which is a psychological diagnosis. And they even went as far as saying “you’re a high achieving young woman, this is what happens at that age. Maybe you’re trying to miss school, maybe you’re stressed, go home, this will resolve in two months.”

Miller: In other words, that [it] was sort of psychosomatic.

Crane-Murdoch: Exactly, saying that her symptoms were basically made up. And so they told her to go home and that she would recover, and it’s been eight years and she still can’t walk.

Miller: Let’s take some steps back here, because we jumped right in with this young woman’s story, but without a grounding on what Lyme disease is. Let’s start with the bacteria, it’s this spiral shaped bacteria. What makes it so challenging to treat? What’s special or scary about this bacteria itself?

Crane-Murdoch: The bacteria called Borrelia burgdorferi, and it’s a spirochaete, a spiral shaped bacteria that is a cousin of syphilis. And it has the ability to enter your bloodstream, and then it quickly leaves the bloodstream. It has the ability to drill through cartilage, it can end up in your brain, it can end up in your heart, it can end up in your joints. And so it’s a very hard bacteria to find, and I think that’s one of the things that’s so hard about Lyme disease. The blood tests that we have for Lyme disease right now are antibody tests. If you remember in the beginning of COVID, we were using antibody tests for COVID, and there was all this conversation about how who we are depends on the antibody response that we’ll create. And so it became a pretty unreliable test. That’s the test that we’ve used for Lyme disease forever. The reason we used an antibody test is because we don’t know where to find the bacteria.

It’s really interesting, if you get bit by a tick you can send the tick in and have it tested. And that tick testing is actually much more accurate than human testing because you can grind up the tick and you can look for the bacteria wherever it may be. That’s a test you don’t want to do on humans.

Miller: If you do that, and it comes back that the tick carried the bacteria, can you safely assume that you have the bacteria as well?

Crane-Murdoch: Doctors would say no. What we say is that it’s a really great way to know at least what you’re exposed to, and so that you can monitor your symptoms. There’s some controversy around this as well. But the standard idea is that the tick has to be on for 24-48 hours in order to transmit Lyme disease. There are some things there that could make that timeline shorter. The tick could be partially fed, so it could have started that feeding process and fell off and then bit you. So there needs to be some better research on that as well.

Lyme disease is not the only thing that takes carry, and there’s other things that ticks carry that can be transmitted quicker. So we say if you ever get bit by a tick, and we don’t work with any of these companies, but you can send them to these companies, you can find them online, one is called tickreport.com, and they’ll send you a whole panel of what you could have been exposed to. And so then you at least know what to look out for, and you know to monitor your symptoms.

Miller: One of the scientists you talk to calls Lyme disease, or this bacteria, the new “great imitator.” What does that name mean?

Crane-Murdoch: So the great imitator was a name given to syphilis. And the reason they gave it to syphilis is because it was this disease that could look like so many other things. And so syphilis has these, these really distinct stages, and in each stage, it looks like something else until by the final stage, you’re like “wow, this is a clear hallmark of syphilis.” Lyme disease has a couple of clear hallmarks, those things happen really early on. Those things being a bullseye rash, that’s a really distinct sign of Lyme disease. A swollen knee is a very distinct sign of Lyme disease, an arthritic expression. Also, seeing a tick on you is a way to know.

But ticks can be the size of a poppy seed. The rash doesn’t happen in everyone, it can look like another type of rash. And the swollen knee doesn’t happen in everyone. And so what you have is that people will get bitten by a tick, not realize that they were bitten, and then the disease will progress for months to years. And at that point, it can look like all these different things. We’ve talked to patients who had MS diagnosis, ALS diagnosis, Parkinson’s, dementia, Alzheimer’s, all sorts of really severe diagnoses, a lot of autoimmune illness as well, where once they were finally tested for Lyme disease, it turned out that they had it.

The new great imitator is this idea that it can look like so many other things, which makes it so hard to diagnose. And I think that’s why it’s so often missed.

Miller: In combination with the fact that, as you noted earlier, the tests that are used often are either inconclusive or don’t work for other reasons.

Lyme disease was first discovered in 1975 in a cluster of cases around the Connecticut town that gave it its name. How long was it before the debate that we’re still living with, about chronic lyme, really emerged?

Crane-Murdoch: There’s some debate over that. You ask some of these doctors that have been in the field forever and they would say it’s, it’s been the whole time. I think the nastiness of the debate really emerged in the 90s, but even then it was controversial from the beginning. And I think what happened was when it was first discovered there was this desire, a desire that I understand, to really define what it was from an epidemiological standpoint. So how do you know what this is versus what something else it could be? And in that first rush to define, I think that the circle that was drawn around Lyme was drawn too tightly. It got drawn even tighter in the 90s. And that was, as we get into in the film, there was this push for a Lyme disease vaccine. In order to study a vaccine, you have to have a really good understanding of what a disease does. And so that’s when the definition of Lyme disease became solidified as a bull’s eye rash and as arthritis, and not much more than that. And that’s when the test became standardized as well. And that test and that definition, I think are what have caused the situation, where patients who exist outside of that can’t get treated, and where doctors who want to treat patients for longer are not allowed to within the system that we have. And that debate got very, very nasty in the 90s, and has remained nasty up until today.

Miller: What role have insurance companies played in this?

Crane-Murdoch: Insurance companies play the role that they play in a lot of things which is insurance companies are very present in diagnostics, in the way in which doctors diagnose. Everything has a code now. And we get into this in the film, the idea of managed care and the implementation of managed care, which was voted on in the 70s, but really came to the fore in the 90s. This was the idea that the insurance companies were trying to manage their costs. One doctor in the film called managed care “managed costs,” which is how [are] we efficient about the way that we are diagnosing and treating patients? And so what we saw is that when that definition of Lyme disease became so small and so rigid, the insurance companies jumped on that. And you’re not allowed, as a doctor, to treat outside of those guidelines.

And in fact, doctors who have tried to treat patients for longer, tried to give them antibiotics for longer than the 2 to 4 weeks that are recommended, have had their licenses removed. Insurance companies have gone after them for spending too much of their money on the disease that they don’t think is as serious as these doctors believe it to be. And these were small family practice doctors who were seeing all of these patients show up in their office saying “hey, I got treated with 2 to 4 weeks of antibiotics and I’m still sick.” And they weren’t Lyme disease specialists, but they ended up becoming Lyme disease specialists because so many people were coming in with the same exact complaint.

Miller: For decades, what was the official guidance or official line from National Institutes of Health or the CDC or an official body of infectious disease experts? If somebody had said “I have chronic Lyme disease,” what was the official line?

Crane-Murdoch: The official line is that chronic Lyme disease does not exist.

Miller: In other words, what you’re saying you have, it does not exist.

Crane-Murdoch: We could nuance that, but I think from the patient’s side, that was the message that was received. And this has started to change recently and I think that’s great. But a number of years ago, the CDC started referring to it as “Post-treatment Lyme Disease Syndrome.” We actually don’t even really get into this in the film because, in my mind, that was a semantic move to sort of say “okay, we recognize that there is something going on with these patients, but it is post treatment,” which is to suggest that you do not need more treatment. The crux of the issue has always been, if you come in and you say that you have chronic Lyme disease, does that mean that the bacteria is still there and that you still need to be treating patients with antibiotics? What Lyme disease doctors have done is they have treated patients longer than the 2 to 4 weeks standard protocol. What mainstream medicine has said is that after 2 to 4 weeks that bacteria is gone and you do not need further treatment. And so the debate is whether the bacteria is there, and if it is there, what do we do about it?

Miller: But you point out in the film that 15 years ago, scientists found that mice and monkeys that had been treated with antibiotics were still found to have the bacteria that cause Lyme disease in various organs. And that two years ago, the bacteria was found in the brain of a woman who had aggressive antibiotic therapy. Have these findings changed this longstanding debate? Has the medical establishment said “okay, we were wrong about the ability of this bacteria to hide and to still affect bodies?”

Crane-Murdoch: No, not really at all. I think that that science has been controversial, as everything in Lyme disease has been. A lot of that science was funded privately. And so doctors who receive NIH funding, (the core group of people who have received all of the federal funding for a very long time, that’s also starting to change,) they have said that this science doesn’t prove anything yet.

And so the question is whether these, these spirochaetes that people have found in monkeys, in mice, in dogs and now in a human brain, whether they’re still viable and whether they’re still causing disease-

Miller: As opposed to some artifact?

Crane-Murdoch: As opposed to some sort of leftover artifact, a bit of DNA left over, but that’s not actually causing any sort of disease process.

Miller: Do you think that there’s reason to mistrust those scientific findings in and of themselves, separate from the fact that private foundations or people who the NIH might see as activists funded that research?

Crane-Murdoch: I don’t think there’s any reason not to trust it. I think that it’s early on, that’s the thing. I think what these research studies have showed us is that Lyme disease is more complicated than we’ve allowed it to be. And what we need to do is to do more research. And I think what’s happened, because the fight has been so nasty, there has been this sort of how do we prove each other wrong rather than how do we further the field? And so what I would say is that those research studies should be replicated, and we should look at them again and again, and we should use them as sort of the precursors to the questions that we’re asking. That has not been the case.

I think slowly, now, things are starting to shift. There are some good folks at the CDC who are starting to try to take a different tune.

Miller: People who weren’t there who weren’t there during the sort of Lyme wars, and the positions got hardened and the personalities were in intense conflict.

Crane-Murdoch: Right, exactly. But a lot of those people who are around in the Lyme war still sort of exist in the hierarchy of how we decide what to do with this disease. And so as new people come in, things are starting to shift. And there has been some more money allocated to new research. What we always advocate for is, we need new research from new scientists. And that’s why in the film there’s a doctor, Doctor Neal Specter, who’s at Duke University. To me, he was the epitome of what a scientist should be, because he stepped in from outside of the Lyme disease field. He had his own experience with Lyme, but he said “I want to bring people to this who know nothing about it, but they’re good researchers and they asked good questions.” And so he brought in all of these cancer researchers to look at Lyme disease. And in a period of three years, he made amazing strides because he was willing to actually ask the questions of how do we further the field, regardless of what’s going on? New blood is going to be the way in which we make progress on this disease, and a new understanding of what these patients are going through and how we actually try to help them.

Miller: How has COVID broadly, but Long COVID in particular, changed the way chronic Lyme, we can call it Long Lyme, I suppose, is thought of or talked about or treated?

Crane-Murdoch: I think the short answer is that it hasn’t yet but my hope is that it will. I think that Long COVID is a really interesting case study. I think if you actually look at what happened with COVID, early on there was some pushback that Long COVID was even a thing. And some of the same language that’s used with Long Lyme disease was used with Long COVID, saying that this is something else, that these patients are just stressed, “these are the aches and pains of daily living” was what someone wrote about chronic Lyme disease once. And that language was pushed for Long COVID for a while.

I think that so many people got Long COVID at once that it couldn’t be ignored. With Lyme disease, I would argue that a lot of people have it, but it’s been a slow trickle year after year after year, it’s something that’s easily missed, so we don’t have the same numbers that we have with Long COVID. But the fact that Long COVID is recognized now I think is a bit of a paradigm shift in medicine. It is a recognition that what we show up with and who we are can change the course of a single disease, and that it might not be treatable in the exact same way for every single person. And so my hope is that that unlocks things for chronic illness in general. Chronic illnesses in this country are exploding across the board, autoimmune illness, and I would argue that Lyme disease is sort of part of that picture even though it’s bacterial. And so my hope is that this unlocks the way in which we talk about chronic illness, and the way in which we do research on what chronic illness is.

And I think also there’s gonna be big questions about how the insurance industry then handles something that can be long lasting long term, and that doesn’t have obvious easy answers.

Miller: My understanding is that you actually met the co-director of this film at a medical clinic where you were both seeking treatment for chronic Lyme. You don’t mention that you have this disease yourself in the movie. How did you approach your own experiences as you both were making this film?

Crane-Murdoch: Her name is Lindsay Keys, she’s my co-director on this film, we met back in September of 2015 and set off on this crazy process. We were both so sick at the time, and I think that this felt like in many ways the only thing we could do in that moment. We both left our jobs to move home because our symptoms were so bad that we couldn’t work anymore.

For a while we considered putting ourselves in it. There were a number of considerations when going into making this film. I think first and foremost was the way in which Lyme patients have been perceived. There’s been this idea that patients who believe that they have chronic Lyme disease are crazy, and that idea has been pushed by a large portion of the medical community who doesn’t want to deal with these chronically ill patients. Granted, a lot of these patients are very angry and there’s been a lot of nastiness back and forth, so in some ways that narrative has been fed by patients and by the patients’ experience. But certainly not in enough of a way to be dismissed in the way that they’ve been dismissed. We were thinking about, how do we make a film that feels bulletproof and who do we choose? And we decided to keep ourselves out of it because we didn’t want it to feel just like an activist film. Although of course, we had goals with how this film would be received and what we would say.

Julie and her family, immediately we realized that they were just such incredible people and that they could carry this film. And then we found Dr Neil Specter at Duke University, he had to get a heart transplant because of Lyme disease. He was a pretty world renowned cancer researcher, and he transferred his research from cancer to Lyme to try to find better treatments and diagnostics. And there was so many other people that we filmed with as well. We realized that our stories sort of paled in comparison to theirs. They were just such amazing characters, and we felt people could really resonate with their journey and with their stories and with who they were and how they were fighting.

And then the last thing I’ll say is that we didn’t want to choose people who were just victims. We wanted to choose people who were finding their own ways to fight back, and who were showing up for each other, showing up for their communities, and trying to do something that made it so that other people didn’t have to go through what they went through.

Miller: I want to turn to geography before we’re done here. Obviously, Oregon is not the epicenter of Lyme, that’s in the northeast, in Westchester County, in Southern Connecticut, the east coast has way more cases. But cases are increasing in Oregon as well, right?

Crane-Murdoch: Cases are increasing in Oregon. All across the west coast. They’re increasing all across the country.

Miller: What advice do you have for people listening, maybe who have spent their whole lives on the west coast and have never done tick checks or never really thought about Lyme disease as something that you can get just by going for a walk near your house?

Crane-Murdoch: Well, one is even people who have spent most of their lives on the west coast, I imagine that they’ve traveled. California has areas that are as endemic as the east coast for Lyme disease. That’s not very far away.

Miller: Northwestern California. Or Southwestern Oregon.

Crane-Murdoch: Or Southwestern Oregon, even up in Hood River. I got bit by a tick in Hood River last spring. The percentage of ticks that have Lyme disease is a lot lower than those on the east coast, but it’s still very much out here.

Things that you can do: you can spray your shoes and your socks with permethrin, which is a chemical that is used in the army to keep ticks and other bugs away, and it’s pretty safe. You can tuck your pants into your socks and look like a nerd out on your hikes. And then do tick checks. Always check when you come in from the woods. You can also put your clothes in the dryer for 15 minutes, that will kill ticks. You can take a shower after a tick check. But I think the main thing to do is to check yourself and your loved ones.

If you do get bit by a tick, I do recommend sending it off. You can send the tick off to these various labs. You can just Google “tick testing labs” and they will run panels on what the tick’s carrying, and then at least you know what you were potentially exposed to. It does not mean that you have it, but it is information for you moving down the line.

Miller: What’s the connection between the spread of ticks and climate change?

Crane-Murdoch: I think it’s a big connection. One of the main journalists in our film wrote a book called the “Lyme: The First Epidemic of Climate Change.” There were so many things to get into the film that we didn’t cover it all that much, and that’s honestly one of the things that I wish we could have. Ticks are spreading in all directions in the United States, they’re spreading across the world. Canada has been considered the new frontier. There’s a lot of really interesting data. Our testing is better on dogs actually, and our surveillance can be better on dogs. And so there’s areas in Southern Canada now where they’re testing dogs, and they’re coming up with so many of them are testing positive for Lyme disease. That’s a signal that it’s moving north, and climate change is a big driver of disease in general, but Lyme disease as well.

Miller: Winslow Crane-Murdoch, thanks very much.

Crane-Murdoch: Thanks for having me.

Miller: Winslow Crane-Murdoch is the co-director of “The Quiet Epidemic.” It is being screened tomorrow night at 7:30 at Portland’s Hollywood Theater.

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