Note: the following transcript is a radio script and contains audio cues and other quirks (including imperfect grammar) of the medium. It may contain typos.
Taylor Quimby: By the time I first started working on this series last summer, I had read controversies about the term Chronic Lyme Disease. I had read that doctors had lost their medical licenses for prescribing long-term antibiotics. I had tackled divisive topics before - I thought I could figure it out.
Taylor: Am I right in that… Because I’m just curious from a science…
Voice: No no no no no no
Taylor: But quickly, I found myself in the weeds. Struggling to understand scientific papers...
Voice: Yeah, I mean that is a broad question, and it applies to all of science in a way….
Taylor: Calling experts, and then stumbling through my questions.
Voice: I’m sorry, what was the question?
Taylor: I don’t know. I don’t know. I guess I don’t know what I’m asking.
Taylor: And then I started to wonder… What if the reason it’s so hard to navigate these topics, is because of something you won’t typically find in the scientific literature? What if some of the biggest fights and controversies over Lyme actually have to do with values?
Jeantine Lunshof: Normative ethics is about human actions.
Taylor: This is philosopher and ethicist Jeantine Lunshof.
Lunshof: What is the right thing to do.
Taylor: When you hear the phrase “medical ethics”, you might think of things like consent to treatment, information privacy.. The whole “do no harm” thing. Concepts that start and end with one doctor and one patient..
Lunshof: So you're looking at outcomes, its consequences. And at the same time, you know, you're looking at what what would be your duty, your obligation to do as that as a doctor or as a nurse.
Taylor: But in a world with limited resources and uneven healthcare, what is and isn’t ethical can spill out of the exam room, and into society as a whole.
Lunshof: In classical medical ethics… that is that is a big dilemma. When you when you look at our collective health, say public health, when doing the best for one person may may have consequences for public health, it may also have economic consequences and think after the very difficult dilemmas that arise with expensive treatments.
Taylor: Case in point - Leber's hereditary optic neuropathy, or LHON, a rare hereditary disease that leads to blindness. Lunshof tells me that in 2016 scientists pioneered a breakthrough genetic therapy that could end this disease as we know it.
Lunshof: It seems that it can cure these patients, that it can prevent blindness.
Taylor: there’s a catch.
Lunshof: This therapy crossed eight hundred thousand dollars. So should you give that? Can you give that? Which society can afford it?
Taylor: Eight-hundred thousand dollars per person. That’s enough money, Lunshof says, to perhaps vaccinate hundreds, maybe thousands of children against a disease like malaria.
So ethics question: if it were up to you… What would you do?
Lunshof: Saving, rescuing their vision or performing a large vaccination program. You can spend money only once, so what are you going to spend it on?
Taylor: Whether we’re talking about where to put research dollars, or what treatments should be covered by insurance, personal healthcare decisions are impacted by public consideration. And the reverse is true too - the way healthcare is designed, is influenced by our desires as individual patients.
And this tension between personal and public health, it isn’t just financial. There are actual cases - where to treat one disease increases the risk of another - cases where the treatments that help you - may indirectly wind up hurting someone else.
Lunshof: Is this a good action? As such as something that you do, even regardless of the consequences?
Lunshof: There is nothing that has no price. I think that is very important to be aware of.
[mux]
[Production note - in the following section, lines are tracked using both sides of the slash, and then panned to the left and right - so there’s a split chorus effect for the nut graph]
Taylor: It can seem like there is a gulf between epidemiologists and health care providers and scientists, and the patients they’re trying to help.
Like two people/humans, looking at the same information/statistics from two different perspectives/angles, can walk away with radically different conclusions/interpretations.
I’m Taylor Quimby.
Today we're talking about the central controversy of LymeWorld: Chronic Lyme disease. What is it? Where does it come from? And why is treating it - with long rounds of antibiotics - so controversial?
This is a fight that isn’t what you think it is.
This is a proxy war over the future of medicine as we know it.
Voice: Really it’s not underselling it to say that it is one of the most serious threats to the health and safety of the population not just of the United States, but of the world.
This is Patient Zero.
----
Meghan O’Rourke: The history of medicine has been a history of moving from kind of thinking about temperament and constitution to thinking about actual specifically defined diseases that have specific sets of symptoms, very specific manifestations. And this is where I become a kind of challenge to the medical system because I don't seem to have that.
[Mux]
Taylor: This is Meghan O’Rourke, a poet, the newly appointed editor of the Yale Review, and a contributor to The Atlantic. Her story, I think one of the final case studies we’ll hear - one that touches on just about every idea we’ve covered on the podcast up til now.
Listen in, and see if you can recognize them as we go.
Meghan: Well the mystery of the mystery is that I have no real idea where it really started. But the story I tell myself… [fade under]
Taylor: In the fall of 1997,after a week with her family vacationing on the Connecticut shoreline, Meghan took a job as an editorial assistant with The New Yorker magazine.
Meghan: and I noticed as I was walking to work that I would begin getting these electric shocks, as I called them, all over my body. And they were so violent I would have to stop and rub my legs or else my legs would begin just twitching and spasming and I would almost like fall over.
Taylor: Like a tingling sensation or more painful than that?
Meghan: Much more painful and sharp.
Taylor: There were other unusual symptoms too. Her fingers were turning blue in the cold, she was getting hives every day - and at work, she started taking the elevator.
Meghan: I couldn't really walk up and down the staircase. It may give me so much vertigo because there was something about the open backs and seeing the floor below, which was really strange because I'd been a gymnast
Tayor: Life went on this way for a long time. Strange intermittent symptoms throughout her 20s.. Doctors checked her for lupus, and other issues to no avail.
Meghan: Didn’t test positive for any so I was getting this kind of, you’re fine, you’re just a little bit worried from most of the doctors I saw.
Taylor: But then… In her 30s, Meghan was given a diagnosis. An auto-immune thyroid condition that can cause dry skin and hair, fatigue, and a number of other issues.. For people with chronic illness - putting a name to their symptoms can be a huge relief… And Meghan was prescribed hormone therapy and life-style changes to help reduce her symptoms.
Meghan: So I was like going to sleep at 9 o'clock. I was, you know, squeezing the skins off organic almonds every morning to make my own almond milk. I was doing everything…
Taylor: I didn’t even know that almonds have skin.
Meghan: Almonds do have skin [heaves sigh].
[mux]
Taylor: Relieved as she may have initially been - Hashimoto’s disease didn’t explain everything Meghan had experienced up until this point. And therein lies one of the confounding aspects of health - at any given time, a person’s body may contain a constellation of problems that aren’t easy to unpack. And despite the hormones, the exercise, eating healthy, cutting out on the sorts of activities that could aggravate her thyroid condition - Meghan wasn’t feeling any better. For some reason, she was feeling worse.
Meghan: My doctor said, well, you do feel better. You just don't realize it. And you want to feel 100 percent, but you're going to feel 80 percent for the rest of my life. And I remember, I love this doctor, but I remember looking at her and being like, I am at 10 percent.
[music swell]
Meghan: What’s hard about whatever it is that I have, like many people who have these kinds of chronic illnesses, is that a lot of it was invisible, right? It was I didn't feel very well. It felt like I had the flu every day. I ached...
Taylor: And that’s how Meghan wound up turning towards alternative therapies. Browsing online communities of other chronically ill patients with ill-fitting diagnoses, searching for medical spaghetti to throw at the wall.
She knew that many of the treatments she found there didn’t have a lot of science behind them - but she was desperate.
Meghan: I had more and more neurological symptoms. So I was developing tremors. I had large numb patches on my left hand in particular. I'm left handed. I was losing control of my left hand. Like I couldn't really write with my left hand anymore.
Um, there wasn't a lot of risk to me in trying some stuff out that was not well supported because I thought, I'm not sure I'm going to be alive in a few years.
Taylor: She heard online about a drug that had become popular with chronically ill patients. It’s called Naltrexone - an opioid blocker, prescribed to help people with substance abuse issues.
There are some studies - not a lot, but some - that show it’s helpful to people with conditions like fibromyalgia, Multiple sclerosis, and Crohns Disease. . The drug is considered relatively safe in terms of side effects. So Meghan, thought what the hell - and went to see a doctor to try and see if she could gin up a prescription.
Meghan: And as that was what I was focused on was trying to get her to give me this medication when she took my case history. She said, it really sounds like you have Lyme disease.
[mux]
Taylor: Her doctor sent blood samples to three separate labs, with different interpretative criteria - including ones not approved by the CDC.
And not surprisingly, the results were mixed.
The specialty labs, with their liberal diagnostic criteria, said the results suggested yes.
The conventional laboratory, using the more conservative Dearborn standards, said no.
Meghan: And with those test results, I was introduced to the incredibly confusing world of Lyme testing and the even more confusing and destabilising fact that to some degree I was going to have to. Aside how I wanted to know whose interpretation I wanted to listen to and by choosing an interpretation, I was either going to choose to become a Lyme patient or not.
……...
Taylor: We’ve covered all this in previous episodes of Patient Zero. The dismissal of symptoms that don’t point towards a clear diagnosis. The confusion that stems from alternative interpretations of Lyme tests.
But did Meghan have Lyme disease?
[long pause]
Go ahead. Waddaya think?
[pause]
Just kidding, you don’t have to answer that.
Meghan’s case is ambiguous. Her doctors couldn’t figure it out… so how could you? You can’t prove she has Lyme disease. You can’t prove she doesn’t. Certainly not after a five minute podcast interview, anyway.
Taylor: You didn’t get treated right off the bat?
Meghan: No, because I was like ehhh I don’t think I really have this…
Taylor: When Meghan O’Rourke was first told she might have Lyme disease, she chose not to pursue treatment.
The tests were, at best, inconclusive - and she had heard about the culture of Lyme disease, and the fact that it attracted some dubious healthcare providers.
But her symptoms continued to get worse…
Meghan: most disturbingly as a writer, I was losing cognitive function.
Taylor: So after six months or so, she gave in.
Meghan: And Jim, my partner, who's also sort of a skeptically minded person, is like, you've tried everything else. Really? What are three weeks of antibiotics going to do? Which was true at that point. I had done some pretty wacky things.
Taylor: Was this just like three weeks of Doxy?
Meghan: Yeah. That was the beginning.
[Music]
Taylor: The beginning. After her first round of Doxycycline, a standard oral antibiotic, Meghan was feeling a little bit better, but still had symptoms. So her Lyme literate doctor opted for another, longer round - and this time, he added an anti-malarial drug into the mix.
Meghan: I was like, do I really need another round? Do I really need to be on malaria drugs? Like does a lot of drugs, even though it was so much better right away? I was still you know, I really wanted certainty.
Taylor: According to the experts that help set treatment guidelines, 14 days of doxycycline, a standard oral antibiotic, is supposed to cure most cases of non-complicated Lyme disease. New draft guidelines suggest even less - just 10 days.
This, despite the fact that not everybody who undergoes treatment for Lyme disease will feel all the way better afterwards.
In 10 to 20% of Lyme cases, patients continue to have arthritis, or pain and fatigue, or cognitive problems.
For people who have a clear diagnosis of Lyme in the first place - authorities call these cases Post-Treatment Lyme Disease Syndrome.
For ambiguous cases, with weird symptoms, and shaky lab results, for people like Meghan… there is no CDC- official name for this problem... But many wind up calling it Chronic Lyme Disease.
Doctors don’t know how to best help people with Post-Treatment Lyme Disease syndrome - but they’re even less sure how to help people with Chronic Lyme, because often, they’re not 100% sure that it was Lyme in the first place.
…
Taylor: I’ve been pretty much avoiding this up until now but here goes.
There are a few theories about why people have persistent symptoms after treatment. The bacteria may have caused permanent damage to the joints, or has triggered an auto-immune reaction that lasts even after the infection is treated. In some cases it could be misdiagnosis - s It could even be a combination of these things.
But only one theory would require more antibiotics - and it’s the theory embraced by the chronic lyme community: The spirochete, they say, ain’t actually dead.
Monica Embers: In 2012, we demonstrated that we could recover spirochetes from animals that had been treated with 28 days of doxy.
[Music]
Taylor: This is Monica Embers, Assistant Professor in the Division of Bacteriology and Parasitology at Tulane University. She’s not a chronic lyme advocate per se - but she’s referenced by them frequently, because her work provides the strongest evidence to date that some Borrelia spirochetes can survive courses of antibiotics.
Embers: We did identify spirochetes in multiple tissues, we found it in the brain, we found it in the heart…
Taylor: Dr. Embers co-authored two studies using monkeys, that have shown infected monkeys didn’t fully clear the infection after antibiotics.
Embers: ...in and around peripheral nerves we found it in the joints.
Taylor: But these studies also have limits. The bacteria Dr. Embers did find were not clearly capable of causing disease…
Embers: Are these spirochetes dormant. Are they continuing to cause disease? Are they attenuated and they will eventually just go away?
Taylor: And more importantly - monkeys are not humans.
Mark Klempner is a professor at UMASS medical school, and a longtime lyme researcher. He says, if the infection really persisted in people - why can’t we find the spirochetes?
Mark Klempner: If it is caused by an ongoing infection, we should be able to isolate it. And we've looked on in an awful lot of places for that, you know, spinal fluid and blood and skin and all those. And you just don't find it in in the vast, vast, vast, vast, vast majority of persisting symptoms people. So it's led me to believe that these people have definitely ongoing symptoms and we need a better approach to them. But it's not to try and kill persisting microorganisms.
[mux]
Taylor: And yet, more antibiotics - drugs designed to kill or stop microorganisms - are often what chronic lyme patients wind up getting.
According to mainstream medical guidelines on Lyme, the toughest cases - hospitalized patient with lyme carditis, or cases of lyme-related meningitis - might require up to 28 days of Intravenous antibiotics.
Occasionally, if clear signs of infection re-emerge, another round might be warranted.
By contrast, Meghan wound up taking oral antibiotics for about eight months straight. That’s about eight times longer than the longest recommended prescription.
Meghan: You know... I'm sitting here reading these studies, and thinking… I”m turning myself into a guinea pig. And I just don’t know. I don’t know.
Taylor: Guinea pig or not - Meghan says the antibiotics helped. Her energy was back. She and her husband got pregnant.
But the question of whether she is quote unquote better has remained.
During her pregnancy, Meghan’s Lyme literate doctor recommended more antibiotics, just to be sure. And twice since her recovery , the shocks have returned, and each time - she winds up having to make the same decision: should I take more?
Meghan: I'm really reluctant to take more antibiotics, I’m really reluctant to go down this path because who knows where it ends? Like, how do you decide it's ended?
Taylor: Like you don't actually get answers on the other side.
Meghan: No, you never get answers, right. You have to become like, the Sherlock Holmes of your own body, which is a dangerous position to be on, even though also you're the only one who can do it.
[mux]
Taylor: Lyme experts are sometimes quoted as saying that there’s no benefit to longer rounds of antibiotics.
But in person, many of these same experts will offer a slightly more nuanced statement.
For example, I asked Paul Auwaerter, the former president of the Infectious Diseases Society of America, if the case on long-term antibiotics was open, or closed.
Paul Auwaerter: So as a scientist I think it’s an open question… 25 - But as a physician I also look at the studies that say 6 to 7 well performed trials have not suggested durable or significant benefit from additional antibiotics … so why would I say that that should be the right course of action for my patients?
Taylor: “No significant benefits.” To most of us “significant” means “substantial” but in science this has a very precise statistical meaning.
Brian Fallon: It was a strong indicator, but not a statistically significant finding...
Taylor: This is Dr. Brian Fallon - director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center.
He co-authored one of four studies, funded by the National Institutes of Health, that have looked at long-term antibiotic therapy for Lyme disease.
His was focused on cognition - would patients with post-treatment lyme disease syndrome, who were still dealing with bad memory and slow thinking after treatment, benefit from an additional 10 week course of IV antibiotics?
Fallon: Even though they did make cognitive gains by the end of the three months of the study, they lost all of their cognitive gains by the end of the six months of the study.
Taylor: In other words, there was a benefit - it just didn’t last.
But even in the case of these two studies, where a small benefit was observed, the authors concluded that the increased risk associated with taking IV drugs outweighed the rewards. In Fallon’s research, 20% of the participants had to either go to the hospital or dropout of the study because of infections, blood clots, allergic reactions or other complications.
Fallon: I think the international community has summarized all of the treatment studies, including mine, as failures.
Taylor: For Fallon, the takeaway is slightly different: if we could figure out a way to reduce these risks but keep the benefits… the treatment might be worth it.
Fallon: Many researchers disagree.
[Music]
Klempner: It's not to say that people don't sometimes feel better after they take antibiotics.
Taylor: This again, is Dr. Mark Klempner - He authored the first two NIH studies on long-term antibiotics back in 2001.
Klempner: But I don't think that there is a link between feeling better and the reason that they think they're taking that antibiotic. There are other things that antibiotics do, like decrease inflammation, for example.
Taylor: So what Dr. Klempner is saying is he believes these post-treatment patients feel better when they take antibiotics because they reduce lingering inflammation, which might be there for any number of reasons.- that we could be using less powerful, less dangerous drugs to do the same thing.
Klempner: you are giving them an anti inflammatory agents, something like a Motrin or you know, or, you know, ibuprofen.
Taylor: Ultimately, it circles back to the problem we had before. If you can’t be sure what’s causing the problem in Post-Treatment Lyme patients, then success is hard to measure…
Long-term antibiotics have helped some patients, in some studies, with some symptoms. But for doctors like Mark Klempner, that’s not enough to justify their use. Antibiotics aren’t meant to be a bandaid. They’re supposed to cure or prevent infections.
This is John Aucott, director of the Johns Hopkins Lyme Disease Clinical Research Center.
John Aucott: There’s some controversy about whether they helped improve some symptoms, especially fatigue. But I have to say, they weren’t curative.
Taylor: Even the woman whose work is often used as justification for long-term antibiotic therapy, Dr. Monica Embers says… it’s probably not the right approach.
Embers: If it doesn’t work in 28 days, I don’t think it’s going to work in 90 or 120.
[mux]
Taylor: It should be noted that there is such thing as clinical judgement. The guidelines are only guidelines, and on a case by case basis, lots of reasonable doctors like Brian Fallon may look at the muddy details of these studies and choose to pursue a few extra weeks of antibiotics.
Fallon: I would definitely recommend that they consider a course of intravenous antibiotic therapy, usually I recommend 4 to 6 weeks.
Taylor: But that’s only a few weeks of extra antibiotics. Longer than that, and that reasonable level of experimentation crosses further and further over into a sort of medical twilight zone. 12 months... 24 months… I’ve heard stories of people on antibiotics for 5 or more years, in different combinations, with batches of other prescriptions and herbal remedies thrown in…
At these lengths, the effects of antibiotics for lyme disease are completely unstudied.. And based off what we know, it might be unethical to even try.
The evidence up until now has shown that the risks are high, and the benefits - from a research standpoint - are low or non-existent.
[Music]
Taylor: But I say all of this in a somewhat tortured state. It’s literally kept me up nights. BecauseThere is so much we don’t know, and we could be wrong.
So, should researchers close the door? Or continue studying long-term antibiotic treatment? That’s not a question that can be answered by science. Society has to decide.
Mark Klempner: How much uncertainty can you live with in order to conduct the business of your day? In biologic systems… we always talk about a 95 confidence interval… what that means is that you are unsure of that 5%. Close to proof, right? We should never be overselling our data, we should never be saying I’m 100% sure, because intrinsically to biology we’re not 100% sure. But I need to convince you that there is that uncertainty in everything we do, and we behave with the 95% rule.
Taylor: But for people like Meghan O’Rourke who are sick, and who nothing seems to help, they’ll do whatever it takes. And then they’ll judge the treatments, not by a series of studies conducted by the NIH, but by their own experience. By a study of one.
Meghan: And, you know, it's the weirdest thing, right? I don't know if I had Lyme disease. I don't know if I had babesia.
I went from thinking that if I didn't start to feel better, I would maybe have to end my life.
I was suffering so intensely.
I went from feeling like that to basically feeling better than I've ever felt before. Over the course of a few months of antibiotics.
Am I just a Lyme patients who for some reason had a slightly funny test? Or do I have something… we’ll never know what I have, but it’s sort of like lyme disease. I don’t know.
Taylor: Yeah. And maybe never will.
Meghan: I don’t think I ever will. Yeah.
But for lots of people, knowing… having a diagnosis, is really important. And having that diagnosis dismissed, is deeply, and personally offensive.
Taylor: When you’re covering Lyme disease, you’ll often hear people say something like:
When will people realize that Chronic Lyme Disease is a real disease? Fake disease?
But what is it that makes a disease “real”?
Meghan’s symptoms are real…
But how epidemiologists name and define those symptoms as a disease is a moving target.
Remember how Lyme disease used to be called Lyme arthritis? Names change the more we learn.
Take for example, the disease once called “non A non B” hepatitis - Doctors didn’t know how to find it, how to treat it, or what exactly it was. Sometimes they even referred to it as “Chronic Hepatitis”.
Aucott: And we would have long arguments on how to treat it, should we give the patients steroids or what we should do…
This again, is John Aucot:
Aucot: and now it’s no longer non A non B hepatitis, it’s hepatitis C… We know it’s genome, we know everything about it...And now it’s curable!
Taylor: Was Non-A Non-B hepatitis real? Of course it was - but eventually, the name was replaced with something more accurate.
Aucott: Or the people who didn’t have Hepatitis C may have fatty liver disease, or auto-immune hepatitis, or drug-related hepatitis, and they’re all treated differently!
Taylor: So let’s transer the lesson: Is Chronic Lyme Disease real?
From a patient perspective, yes… but from an epidemiological perspective, it might not be the best way to describe what people are going through.
Scientists,and researchers, are wary of the term because with ambiguous or negative diagnostics , and symptoms that are all over the place… it might turn out that chronic lyme patients have a mixture of different diseases and conditions that have accidentally been lumped into one.
Aucott: And I think that’s eventually hopefully what’s going to happen with Chronic Lyme Disease , it’s going to be found with a mixture of specific disease, one of which is probably Post-Treatment Lyme Disease Syndrome … but there will probably be other ones, and once they’re defined molecularly we’ll recognize that treating Chronic Lyme Disease like it’s one disease is as wrong as it was to treat chronic hepatitis like it was one disease.
Taylor: Someday, this equation will evolve. We’ll learn more, and the names will change. And hopefully, there will be real answers for people like Meghan. But for now, it’s limbo.
So let’s go back to the question I asked you earlier: Does Meghan have Lyme disease?
Perhaps, one might answer: Does it matter?
Meghan: What I don't understand is the sort of dismissal I see of patients both from the medical establishment and in the mainstream media. You know, these are people who are suffering and these are people who are making really challenging decisions. There’s so much focus on these kinds of shady characters giving questionable treatments to people, and there’s portrayals of credulous patients going to reiki masters and asking for every last thing as if they’re just foolish, and I don’t think most people are foolish. I think most people are really in need of answers that have not been forthcoming. And I think it’s sort of a double wound that we’re painted as foolish people. When actually I think most of us, if we had clearer answers would probably be very happy to have them.
Taylor: This debate - over long-term antibiotics - hasn’t just been taking place in academic papers. Medical organizations have actively tried to prevent doctors from prescribing people like Meghan with long-term courses of antibiotics.
If medicine is all about calculating the risks and rewards, why not let her - and other patients like her - make those decisions for themselves?
You ever listen to an argument, and slowly start to realize that the thing that everybody says they’re arguing about is actually code for something else? I think this is one of those cases.
Because to understand this conflict, you have to understand: it’s not just about Lyme disease.
Aucott: people talk all the time, say, oh, someday we're going to encounter this big problem, we're going to run out of antibiotics. And, you know, this was in the early 2000s. I was like, someday, someday is here.
[mux]
Taylor: That’s when Patient Zero returns.
[BREAK]
Taylor: So why don't I have you start by just introducing yourself.
MaryCurtin Pierce: Okay. My name is Mary Curtin Pierce. So...
Taylor: What do I want to know?
Taylor: Mary was a critical care nurse working at Alice Peck Day Memorial hospital in Lebanon, New Hampshire. It’s a job she cared deeply about. But like all jobs, there are good days, and bad days. And on Valentine’s Day, in 2016, Mary was having a bad day. She was trying to draw blood from a non-verbal kid, and it wasn’t going well.
Pierce: It's easy to forget the impact you have on the people around you. And I I have talked about in the past, you know, a situation where I can remember this mom standing sort of over my shoulder and directing my actions as a nurse and I. Remember thinking that ...I remember thinking she didn't trust me, right?
Didn't she know who I was all these years that I've studied, all these years that I've done this job, you know, and I can remember kind of thinking like rolling my eyes a little bit at her.
Taylor: Trust is a big part of healthcare - not just for patients, but for providers too. It’s hard to do your job when someone else is trying to do it for you.
But it might not have just been the difficult situation that was stressing her out. Because all day, Mary wasn’t feeling too hot.
Pierce: Yeah, like I thought maybe I had appendicitis or…
Taylor: Like really bad cramping?
Pierce: Like pain. I had a really bad fever...
Taylor: Mary had been hoping to avoid the emergency room, which she knew from personal experience could be a zoo. But the doctors at the clinic sent her anyway - and eventually, she was diagnosed with something called diverticulitis.
Pierce: It's pretty normal. Most people will live with it their whole life. It's just like it out poaching, sort of like a little envelope that forms on intestinal tract and that little pouch will get infected sometimes. What that meant was I needed to stay in the hospital for a few days and have I.V. antibiotics.
[mux]
Pierce: After a week or so, I still wasn't feeling well. And you know, what they prescribed is more antibiotics. So, well, perhaps it's just sort of lingering and you need more antibiotics. So I took more antibiotics. And then I really started to feel not well again in a different kind of way.
[mux]
Taylor: Mary, ever the nurse, followed protocol - she called her doctor, who told her to go to the emergency room. At the emergency room, they looked her over and sent her home - it was probably just the diverticulitis they said.
Pierce: I got sicker and sicker and sicker through the night.
Taylor: Is this like throwing up, diarrhea? Yes.
Pierce: at that point, early the next morning, I said, you know, it started out with just abdominal pain, cramping, low grade fever and early in the morning. Then I started to have G.I. symptoms like diarrhea. And it was. I was intensely sick and I felt myself getting more and more weak.
[music swell]
I had this overwhelming feeling that I needed to go to the hospital or I was going to die. And so I went into the living room and I found one of my children. And I told them to get daddy, you know, that I was going to die. And that is the last thing I remember.
Taylor: And then… she came to.
Pierce: some of the surgeons had come into my room and they were changing out the dressing that was packed into my abdomen. Yeah.
Taylor: Mary was in the ICU. Several months had passed. It was spring. And the body she remembered, was not the same body that was lying on the hospital bed in front of her.
Pierce: The I had an ostomy, which means they had taken my intestines out. You know, they were connected to the outside of my body and my abdomen. So, you know, I really… I looked a lot different.
Taylor: Here’s what happened. Mary did have diverticulitis. But the antibiotics she had taken had cleared all of the healthy bacteria in her gut, and paved the way for another, more sinister variety: antibiotic resistant Clostridium difficile... Or C.diff.
The C.diff colonized her gut. Her colon became so inflamed that it eventually perforated - it burst open, spilling its contents into her abdomen.
Suddenly, her insides were bathed in human waste. One by one, her organs began to shut down. In order to save her, surgeons had to slice open her midsection and remove each one of those organs, and literally wash them clean. They cut out the infected bowel, and rerouted what remained into a colostomy: a makeshift opening in the belly.
And because of the nature of this type of infection, the incision had to heal from the inside out. No stitches, no staples. Just an open wound, closing one cell at a time for months.
Pierce: And I remember thinking, did my body save me or did my body fail me? And what became evident to me was that it wasn't any of those things. It was actually my own profession, my own field had failed me. And it’s not nursing, it’s not medicine. It’s the whole system.
Taylor: It might not be obvious, but Mary’s battle against Clostridium difficile, the battle that very nearly killed her, is directly tied to why doctors do not endorse long-term antibiotic use for Lyme disease.
Arjun Srinivasan: We estimate that there are about a half million patients every year in the United States who will develop a clostridium difficile infection, it kills about 15000 people every year in the United States.
And the number one risk for developing Clostridium difficile, or C. diff, is getting an antibiotic.
Taylor: This by the way, is Arjun Srinivasan. He works for the CDC, and is focused a very important issue with a boring, euphemistic name: Antibiotic Stewardship.
Arjun: antibiotics, like any other drug, they have side effects. Right. So they can cause rashes. They can make your tendons rupture. They can damage your or your heart… [fades down]
Taylor: Antibiotics are serious drugs. And what’s worse - many of the people who are prescribed antibiotics won’t benefit at all.
Arjun:Somewhere between 20 and 40 percent of all the antibiotics that we use in the United States are either completely unnecessary. We're prescribing an antibiotic when an antibiotic is not needed or prescribing it incorrectly.
Taylor: infectious disease experts are so alarmed by unnecessary or ambiguous antibiotic therapy...…. Because thousands may die every year from infections acquired during treatments that aren’t actually helping.
But even more frightening is point number two - the possibility that hundreds of thousands will die because antibiotics just won’t work anymore.
Arjun: Antibiotics are the only class of drugs that lose their effectiveness over time. Gonorrhea, very common infection could treat it with a pill. Now, there are places where the pills don't work. They're completely ineffective. So there are patients in the United States who have entered what we call the post antibiotic era. So it's literally like they have been put in a time machine and taken back into the 1930s because they are dying of infections that a decade ago I could have treated with an antibiotic, that now I can't.
Taylor: In other words, patients who gamble on antibiotics, when there is unclear evidence that they need them, aren’t just risking their own necks… they are, in a small indirect way, contributing to antibiotic resistance. Creating deadlier pathogens… and less effective medicines.
Lunshof: Is this a good action, as such? As something that you do, even regardless of the consequences?
Taylor: This again is ethicist Jeantine Lunshof.
Lunshof: Even if it in the short term, it might have been good for that one patient then is then going to contributing to the emergence of antibiotic resistant strains is, is, is… being involved in creating a very serious problem for many people, for health care, for humanity.
Taylor: There’s something I want to make absolutely clear. This is not a straightforward causal relationship. Taking long-term antibiotics does not mean ten people will die from C.diff or something.
But these problems share a universe, and if you want to understand why mainstream researchers are skepticism of chronic Lyme - this is the context you have to keep in mind.
And to be clear - the fight has gotten personal. There are patients out there who are convinced they need long-term antibiotics.
There’s actually class action lawsuit by chronic lyme patients being litigated right now in Texas - one that accuses a group of infectious disease experts of conspiring with insurance companies to deny long-term treatment.
This is Mary Beth Pfeiffer, a journalist and author of Lyme: The First Epidemic of Climate Change.
Mary Beth Pfeiffer: They give just one example in the lawsuit of that actually happening, in which an IDSA physician says he was paid $560 a hour to basically review claims in almost all cases deny them.
Taylor: That may sound nefarious - getting paid to review claims. But in itself, it’s normal for insurance companies to pay experts to review hard-to assess cases.
Mary: So that’s not that unusual. The contention here is that there’s this quid pro quo. Is this about money, is that what is driving this whole problem that we have? I can’t say that.
Taylor: Of course, the doctors being sued wouldn’t say they it was a quid-pro-quo. They’re likely to talk about the issues in this episode - including this one: the overuse of antibiotics.
Mary thinks that argument is thin.
Mary: Lyme disease is the poster child for the overuse of antibiotics and it’s based on very little evidence.
Taylor: From a numbers perspective, she’s right. Colds, bronchitis, urinary tract infections - these are responsible for unneeded antibiotic use at orders of magnitude much greater than Lyme disease.
But from a symbolic point of view, long-term antibiotic therapy for chronic lyme does present a particular problem - because the treatments are being used despite minimal evidence of benefit, with no clear sense that the therapy will cure patients, for lengths of time that are otherwise unheard of in medicine.
Is that an ethically defensible choice? I can’t tell you that. And unfortunately, neither can the ethicists.
Lunshof: Ethicists will not take away the burden of choosing from you. There'd people often hope that, like when. And as an ethicist talking, no one asked me to give talk, to think, oh, so I'm going to present some really morally sound solutions. And that's you know, that's that's that is exactly what what is not going to happen.
Taylor: So this is where we are. Patients and advocates fight for the right to treat with long-term antibiotics. The medical establishment fight to stop the trend from going too far.
The answers aren’t easy. But you do have to hope that everybody is asking the important questions.
Because either way … the stakes are very, very, high.
Mary: Because we let people down. We don't just let that patient down. You know, we let children down, we let of those patients, the spouses, their partners, their, you know, whoever it is that's important to those people.
We leave them.
We you know, we strand them. And then we wash our hands of it. You know, it’s they have to go on living with the condition we’ve created, and then we just move on to the next.
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Editing help for this episode came from Justine Paradis, Jimmy Gutierrez, Annie Ropeik,
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Fact-checking for this episode by Amy Tardiff.
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