Conversations: Ross Douthat
SYNOPSIS
Medicine likes certainty—diseases we can see and test for and treat. But what do we do when we can't see? When we can't help? Do we keep searching? Or do we look away?
In this episode, Emily speaks with New York Times columnist Ross Douthat about his book The Deep Places, which tells the harrowing story of his experience with Lyme disease, and what it's like to navigate a chronic illness that mainstream medicine hasn’t yet fully explained.
LISTEN
GUEST
Ross Douthat has been an Op-Ed columnist for The New York Times since 2009. Previously, he was a senior editor at The Atlantic. He is the author of The Deep Places, The Decadent Society, To Change the Church, Bad Religion, and Privilege, and a co-author, with Reihan Salam, of Grand New Party. He is the film critic for National Review. He lives with his wife and four children in New Haven, Connecticut.
RESOURCES
CREDITS
Hosted by Emily Silverman.
Produced by Emily Silverman and Jon Oliver.
Edited and mixed by Jon Oliver.
Original theme music by Yosef Munro. Additional music by Blue Dot Sessions.
The Nocturnists is made possible by the California Medical Association and people like you who have donated through our website and Patreon page.
This episode of The Nocturnists is sponsored by M3 Global Research.
TRANSCRIPT
click to expand
The Nocturnists: Conversations
Emily in Conversation with Ross Douthat
Episode Transcript
Note: The Nocturnists is created primarily as a listening experience. The audio contains emotion, emphasis, and soundscapes that are not easily transcribed. We encourage you to listen to the episode if at all possible. Our transcripts are produced using both speech recognition software and human copy editors, and may not be 100% accurate. Thank you for consulting the audio before quoting in print.
Emily Silverman
Hi, Nocturnists listeners. The conversation you're about to hear is about the very controversial topic of chronic Lyme disease. As a show that focuses on medical narratives, we feel there's value in hearing the stories of patients and clinicians who navigate chronic illnesses that science has not fully explained. We want to be very clear that this episode explores one person's story and does not constitute medical advice. If you have questions about your health, always seek the advice of your doctor. Thanks and enjoy the show.
Emily Silverman
Medicine likes certainty, diseases we can see and test for and treat. But what do we do when we can't see, when we can't help? Do we keep searching, or do we look away? You're listening to The Nocturnists: Conversations. I'm Emily Silverman. Today I speak with Ross Douthat about his new book, The Deep Places: A Memoir of Illness and Discovery. Ross has been an op-ed columnist for the New York Times since 2009, and previously was a senior editor at The Atlantic. He's the author of The Decadent Society, To Change the Church, Bad Religion, and Privilege and a co-author, with Reihan Salam, of Grand New Party. He's a film critic for The National Review and lives with his wife and four children in New Haven, Connecticut. Before I spoke with Ross, I asked him to read an excerpt from his book. Here's Ross.
Ross Douthat
It was another rainy morning. I awoke with a stiff neck and went to the bathroom to find a red swelling, a painful lymph node six inches down from my left ear. I came out and sat on the bed, rubbing my neck and Googling "swollen lymph node" on my phone.
My wife came in behind me, her voice unusual: "Ross." She was holding a pregnancy test, the telltale strip faint but clear. Our third child.
It should have been another signifier that we were on the right path on the upswing—more kids, more life, more abundance. But after I fist-pumped and we embraced, after I said all the right excited things, after I went out into the rain to take our daughters to their nursery school and pre-K, my mind and fingers kept circling back to the discomfort on my neck.
I had seen the dermatologist for award the previous year, but he didn't have an appointment available for a week, and I was impatient. I wanted the problem—however small—explained and resolved so that we could get back to basking in our triumphs. So instead of waiting to see him, I went that day to the urban walk-in clinic in the heart of Capitol Hill, walking through our dense neighborhood with its pocket parks and carefully controlled daubs of natural green, and let a young internist take a look.
"It's just a boil," he said after a cursory inspection. "Nothing to worry about." He gave me a scrip for a few days of a mild antibiotic, and sent me on my way.
Nothing to worry about was exactly what I wanted to hear. The next two weeks were less soothing. While we did paperwork and drove to Connecticut and back again, my neck began to feel intermittently stiff and painful and I developed what felt like a... vibration in my head. Still, the original swelling shrank and disappeared, and I told myself that the strange feelings, the tension and the almost tremor, were probably stress-induced, just all the life changes piling atop one another and giving me the jitters. Something like that had happened six years earlier: When we were first married and I was commuting back and forth from Washington to Baltimore, there had been a period of odd headaches, pain in my neck and back, that after a few inconclusive doctor's visits had simply vanished, unexplained but attributed, shruggingly, to the stress of my new life and the commute.
Now it was early June, and I was supposed to join a journalists' trip to Rome. On the day before the flight, I went to see a movie and, sitting in the theater, I noticed that the pain was getting worse: There was a stabbing sensation in my mouth, around my teeth, and discomfort sharp enough to call a headache. My mother-in-law arrived that evening, planning to help with the kids while I was gone. She and my wife went out to dinner; I stayed home to put my daughters to bed. I made some pasta for myself and drank two beers. It was my last ordinary meal.
Emily Silverman
Thank you for that reading.
Ross Douthat
You're very welcome. Thank you for having me.
Emily Silverman
I loved this book, I tore through it in a single day. And like most good books, it forced me to question my beliefs. So I'm very excited to share it with The Nocturnists audience. You open the book with this process of moving from DC to Connecticut, and you're ready to live your dream life in New England. But things don't quite go as planned. So tell us what happened?
Ross Douthat
Well, so you got a taste of it in that reading. But basically, my wife and I had been living in Washington, we'd had two daughters, we lived in a very small row house near the Capitol dome. And we were both from Connecticut originally. And we, but especially I, had a kind of fantasy of buying the classic New England farmhouse, and maybe not actually farming but doing it as a hobbyist—having some chickens or something like that. And living there with our kids and raising our family, sort of in the country, far away from the world in which we lived in DC. So we did it. We sold our house, we made a bunch of money off it because the market in DC was terrific. And we bought the farmhouse with stone walls and barns and everything you would imagine. And then while we were in the process of the move, while we were still in Washington, but had been up there and done the inspection and rather fatefully tromped through the overgrown fields, I got sick. And I got sick in a very strange way, with all kinds of weird migratory body pain, insomnia, problems in my gut, diarrhea, eventually, phantom heart attacks... And spent several months in DC before we actually made the move, seeing doctor after doctor after doctor being completely unable to figure out what was actually wrong.
Emily Silverman
We heard a bit about your symptoms in the excerpt that you read. But can you bring us further into the physical experience and talk more about the symptoms and the sensations that came up and also the tempo of the illness? Like, over time? How did it evolve?
Ross Douthat
So basically, at the point where that excerpt broke off, I was about to have this weird evening when it went from being a head-neck problem to being this full body feeling— where there was a baseline feeling of dizziness, quasi-dissociation. It almost felt like half my body wasn't properly connected to the other half. There was tingling in my extremities, weird little muscle twitches. And that was sort of the baseline. And then layered on top of that, there would be these flares of increasingly strong, and always migratory pain that would be in a shoulder one day, your spine the next, your foot the next, and then most frighteningly, at a certain point, in my chest, that sent me to the emergency room thinking that maybe I was having a heart attack. And connected to this then was an inability to sleep at all. If I took a strong dose of sleeping pills, I could fall asleep. But there was very little that actually removed the symptoms. And I took mild painkillers. I tried Xanax and antidepressants, because, not surprisingly, when the doctors were struggling to find anything wrong, they thought, well, this is stress-related. It's a nervous disorder, nervous breakdown of some kind. So I tried things like that with very little effect in those months.
Emily Silverman
I was really struck by your descriptions of the very first encounters with the healthcare system, and how quickly you intuitively felt that you had to "project reasonability," "exaggerate your own self awareness," seem extremely casual. It was like you knew that you had to perform for these doctors. What did that feel like?
Ross Douthat
I felt like very quickly I could put myself in the shoes of the doctors. So, you know, this man shows up who wants to talk to them and has what, to him, is clearly a severe problem. But there isn't any normal, simple diagnosis to be offered. There isn't anything showing up on blood work. And the symptoms are so various that once you get past the initial round of generalists and start getting sent to specialists, the gastroenterologist isn't going to make heads or tails of you saying, "Well, I have pain in my stomach, but also in my toes," right? And the cardiologist is going to test your heart and make sure your heart is functioning. But when you say, "Well, Doc, I have pain in my chest today, but yesterday I had a headache," they're gonna send you to a neurologist who's going to have their own field-specific response. And I don't have a medical background, but I'm a journalist, I'm a member of the professional classes, I feel like I could understand how I would appear to those doctors if I just came in and acted hysterical and desperate. So I tried not to.
Emily Silverman
You mentioned not having a medical background and cycling through these different hypotheses in your mind. How did you settle on Lyme as the most likely culprit for your symptoms?
Ross Douthat
Well, so there was a phase in this period of mystery when I read a long essay in New York Magazine, that was by someone who had had undiagnosed Lyme disease for many years, who was himself, I believe, a doctor. And it had ended up progressing so disastrously that he had to get a heart transplant. And his description of his illness sounded at least somewhat like what I was going through. And I was from Connecticut. So I had some background knowledge about Lyme disease, not not actually that much as it turned out, but some. And so that opened this brief period of a few weeks where I sort of decided, well, that was a plausible diagnosis. And even though my test for Lyme wasn't positive, you could read and see that Lyme disease testing is not a perfect art by any means. And people often test negative early in the illness. And so I convinced one of the doctors, I was seeing to give me a trial of doxycycline, which is the main antibiotic for treating Lyme. And I took it and pretty quickly felt worse, culminating in one of these hospital visits. And at that point, I sort of discarded the Lyme diagnosis and said, "Alright, it's time to try a new theory." But it was only when we actually moved to Connecticut. And we started seeing doctors who treat a lot of patients with Lyme disease that it moved from being speculative to becoming the primary theory of what was going on.
Emily Silverman
In the book, you give a brief history of Lyme disease, and you talk about how there's these two different camps of Lyme. Tell us about those two camps.
Ross Douthat
So basically, everybody agrees on the basics of Lyme disease. It's a bacterial infection carried by ticks, primarily deer ticks. If you get it, a lot of people present with this kind of bullseye rash around the tick bite, then you get a fever or some kind of immune system reaction. And then if the disease isn't treated, it progresses and concentrates in your joints. And people get presentations of swelling in their knees, what looks like arthritis, that kind of thing. And it has neurological manifestations, too. So that's the consensus. And then the official CDC-approved treatment is, naturally, antibiotics. You're supposed to take them for four to six weeks. And most people who do that get better. But then there are people who don't get better. There's debate about how many, but let's say it's somewhere between five and twenty percent of Lyme patients don't seem to immediately improve on that dose of antibiotics. So then the question is, what do you do next? And the official mainstream consensus is that you don't do anything because the antibiotics you've taken should kill the active infection. If you still have residual symptoms, at that point, they are probably some kind of autoimmune response or inflammation leftover from the infection, not an active infection itself. You're just supposed to wait and expect that, gradually, your body will return to normal.
Then there is—and has been now going back decades since the discovery of Lyme disease—a small, but not that small, group of doctors and researchers who think that, actually, Lyme disease persists in these cases, meaning that the bacteria itself is still very much alive in your bloodstream and more importantly, sort of burrowed deep into your tissue, and that you have to continue treating it until you get better. This has been the multi-generational medical controversy. And the strongest evidence for the doctors who want to continue treating it is that we now have a number of experiments, especially on animal hosts, showing that in fact, Lyme bacteria does persist in a lot of animal hosts after an antibiotic treatment. The best evidence for the consensus view is that when the NIH and other places have run trials where they give people with persistent symptoms, longer doses of antibiotics—meaning in most cases, 12 weeks, let's say rather than six—they show either marginal improvement or none at all. So there is not a sort of double blind controlled trial, showing that six months to a year of antibiotics helps people. And so that's more or less where the debate is.
Emily Silverman
In the book, your illness drags on and on. Ams you said, you had never been sick for longer than a couple of weeks. But you really take us into this place where you're months in, several months in, and you go on this journey where you visit different doctors and you give a few of them nicknames. So tell us about "The Reassurer," "The Maverick," and "The Grinder."
Ross Douthat
So The Reassurer was one of the first doctors I saw. And he was someone who basically occupied a space in between the CDC consensus and the real outsiders, where he said, "Look, I don't think we should treat people for Lyme disease for years and years. But sometimes you need more than four weeks. So you should just continue taking the antibiotic you're taking for a couple months, and then we'll see where you are." And that was probably four or five months into the illness. That was very much what I wanted to hear—that I could just take amoxicillin, one antibiotic, take it 'till Christmas, which was a couple months away, and see tons of improvement.
And at the same time that I saw him, I saw a doctor who was more on the fringe, who is the one I call The Maverick, who was much scarier. Right? He was someone who said, "Chronic Lyme disease is totally real, it's wildly under diagnosed, the medical establishment doesn't understand it at all, and you're really sick, Ross, and I treat people for months and even years. And you might have to try a lot of different things over a long period of time to get better. And that was not what I wanted to hear. So I did not go to that doctor, initially. I followed the more reassuring course. And, unfortunately, the more reassuring course, didn't get me better. I took one antibiotic, I didn't get worse, but I definitely didn't get better. And so at a certain point, I switched to The Maverick and started taking his combinations of antibiotics. Did that for four to six months, maybe saw a tiny bit of improvement, but not much. And so by this point, I've been sick for a year—more than a year—we've just had our third child. We're living in this rural splendor that had become this essentially nightmarish existence, where we felt like we were characters in some sort of Stephen King novel.
And so I basically said, "Well, I, I need to try... What's the most extreme thing you've got?" Right? Like, and the most extreme thing used to treat chronic Lyme is intravenous antibiotics. And the doctor I saw didn't recommend IV antibiotics. He thought oral antibiotics work just as well and we're safer. But he let me go to this third doctor, who I called The Grinder, who basically just would give you intravenous antibiotics every day for as long as you are willing to pay. So I did that for several months. Through all this, the pattern that was established in that first experiment with doxycycline repeated itself, which is that when I would try a new antibiotic, or try a stronger dose, I would have an intensification of symptoms. And in the theories of chronic Lyme, this is called the "Herxheimer Effect," which is named for these 19th century Austrian doctors who observed it in patients treated with penicillin for syphilis, where the theory is that if your body is full of bacteria, and you kill a bunch of them, your immune system goes nuts for a little while and then calms down once they're flushed out of your system. So like everything with chronic Lyme, this is highly contested. But this was certainly the experience I had. I had it very strongly, seemingly, with the IV drug. But I didn't actually make progress. And eventually I went back to The Maverick—back to the doctor with his combinations—and found a combination that actually seemed to give me some control over my symptoms. They became more predictable, they seemed to respond more directly to the drugs I was taking. And at that point, almost two years in, was when I actually started to very slowly get better.
Emily Silverman
These doctors outside the mainstream are really interesting to me as characters. One of the lines that stood out in the book is when you're describing The Grinder, the one who gives IV antibiotics, and you're talking about how he wears Hawaiian shirts, and you say, "He let me rant and rave without venturing strong opinions of his own, didn't try to cheer me up, when I slumped in his chair and gave vent to my despair, 'feels like you just want to crawl into the woods and die, huh?' he would say cheerfully checking the antibiotic drip." You also say that he declined to make predictions about how long you would need treatment. He would say, "It takes how long it takes."
Ross Douthat
Yeah, he was quite a character. And the reality is that, as you would expect, in order to become the kind of doctor who exists in this strange twilight world where you're operating somewhat outside official consensus—sometimes getting in trouble with state medical boards, and so on, putting yourself at a sort of distinctive kind of risk for lawsuits, I'm sure—you have to be a certain kind of character or personality. And often these doctors are people who have had personal experiences themselves. And this was true again, and again, for people I would meet. But that also means that you have a field that's populated with eccentric characters, which to an outsider, anyone inclined to be skeptical of this kind of treatment. It just sort of ratifies the skepticism.
Emily Silverman
You talk about how a lot of the Lyme literate doctors have personal stories, either with chronic Lyme or with other mysterious medical conditions. But you also talk about how after you move to Connecticut, you started just to kind of ask around. And it was like the stories would burst forth. It seemed everybody in the region either had an experience or knew someone who had an experience. And as I was reading this, I was thinking about a friend of mine who lives in Connecticut, so I decided to run an experiment of my own. So I texted her, and I said, "I'm reading a book about chronic Lyme do you encounter this?" Her response was, "Oh, my God, it is like an ever-present fear. What's the book? I'm terrified just talking about this. I basically, I basically just put it out of my mind all the time." And I was just so struck by the intensity and the emotionality of her response. So tell us a bit about this underground secret in New England, or the ways that people would kind of pull you aside and confess and share their own secrets.
Ross Douthat
Yeah, it's this incredibly curious thing, because Connecticut is one of the wealthiest states in the country. And the parts of it that are most in contact with nature—the suburbs, and rural areas—are often the wealthiest parts. And you would sort of expect that if there was a disease, this sort of hidden disease, shadowing a community of privilege, it would get outsized publicity. And people would be talking about it all the time. And maybe it would get unfair levels of medical attention relative to other problems. But instead, it's more like this dark secret. And that reflects this medical divide, where to believe in chronic Lyme disease, to believe in its reality, is to put yourself sort of outside the consensus in some way. But once you're there, and once you're sick, and once you talk to people about your sickness, it's exactly a version of what the reaction from your friend was like, where it's the thing where everyone takes it for granted that someone in their social circle has lost a year or two of their life to this.
Most of the chronic cases do eventually get better as I have gotten a lot better. And that's part of it too, right? It's not for the most part, a disease that kills people, so there's less urgency around it. But yeah, the whole thing has this horror movie feel—"the nice young couple moves to the beautiful small town and oops, it turns out that every year they sacrifice one person to the tick gods"—right? Like it's, it's that kind of vibe. And it's a very strange thing to come into. And it has definitely gotten worse. Lyme was a bit of a shadow over the state in the '80s and 1990s. But the number of cases has just gone way, way up. And that, I think, explains why my wife and I were less aware of it than we should have been like, I remember my mother when we bought this house being like, "Ah, Ross, you got a lot of deer here. You got kids, are you sure about this?" And I was sort of dismissive. And I think had we grown up in Connecticut now, instead of in the '80s and early '90s, we would have been less naive about the possibility that something could go quite wrong.
Emily Silverman
And in the book, you talk about how some of the hypotheses around the rising numbers of cases are that it's related to climate change and deforestation. Is that right?
Ross Douthat
Yeah, suburbanization is the key force. So basically, you have a disease that's in the deep woods. And then the suburbs divide up deer habitat. They bring not just deer but other woodland creatures that carry these ticks into contact with human beings on a much larger scale than you would have had in like 1920. And so, boom, you've got an actual epidemic. And then climate change, in theory widens the terrain for ticks, but also reduces winter, which means you have more ticks, because fewer ticks die in a warmer winter. And so you get larger numbers of ticks in places where it's already endemic. If you look at a map of Lyme in the US, there's the northeastern hotspot, there's another hotspot in the Minnesota-Wisconsin part of the Midwest, then it sort of skips over Ohio and Michigan, interestingly. You've got a lot of cases in Virginia and then tapers out as you go south. But it's spreading everywhere. Even places like Texas and California that have very few cases have had more cases over the last 10 or 15 years.
Emily Silverman
I want to spend some time on the weird stuff. You talked a little bit about the Jarisch-Herxheimer reaction, which I think probably a lot of our listeners are familiar with, as you said, from syphilis. You also talk in the book about how both syphilis and Lyme are spirochete bacteria—so this corkscrew, really highly invasive bacteria. And so in the book, you experienced the Herxheimer reaction, or what the Lyme community calls "herxing" after taking certain antibiotics. But you also experience it after trying some more fringe treatment options. So for example, the Rife machine, which maybe you can explain to the listeners what that is, you acknowledge that this sounds bizarre. Where are you personally landing on that? And how are you integrating those parts of your experience into your story?
Ross Douthat
When I set out to write the book, I felt like there was a version of the book that I thought would be maximally persuasive to someone disinclined to believe in chronic Lyme disease. And that would be a book that just focused on the core treatment, which really is the main way that I think I got better, which is taking mixtures of antibiotics over a long period of time, following the general protocols that these outsider doctors lay out. I want to convince the skeptical that that part of it is real, and the medical system should take this seriously. But I also wanted to tell a story that was true, not only to my own experience, but I think the general experience of a lot of people who have these kinds of chronic illnesses, which is that when you're this sick—meaning that you feel like your life has just been stolen from you, and there's no way to get it back—your cost-benefit, risk-reward calculus changes dramatically. And you basically become willing to try anything.
And then within the communities of the chronically ill, you have these anecdotal testimonies around things that are much more fringe than taking three antibiotics instead of one for nine months instead of two months. Ozone therapy and just a whole range of things, and I didn't try all of them. But the two I tried that did seem to have reactions that were a lot like the reactions when I took antibiotics were this therapy where a Chiropractor put magnets on the affected areas of my body while I lay on her table—you do sort of a 45-minute session. And this machine named for a very quackish sounding doctor named Royal Raymond Rife from the 1940s that is supposed to generate audio waves that shatter bacteria at certain frequencies, much the way a opera singer's voice can shatter a champagne glass at the right frequency. And this machine is basically a weird box looks like a 80s computer from, like, War Games or some 1980s sci-fi movie. And it has metal things that you grip that transmit the waves through your body, and you type in the frequency into the box and the box generates this frequency and, you know, by God, it really seemed to work. I don't know what else to say, right? And in saying that I am from a skeptic's point of view, I am undercutting somewhat what I think of as the core medical testimony of the book. But I'm also, 1) saying what actually happened, and, 2) I think being true to just the really complex reality of what it's like to try and treat yourself for an illness that the medical system doesn't have a simple way of treating.
Emily Silverman
You mention the complex reality of Lyme and how you spent a lot of time on Lyme message boards on the internet, reading anecdotes, reading testimony. What are those online spaces like in the book? You describe a questing spirit and an openness, but also an inevitable, conspiratorial side. Tell us about the lime internet community.
Ross Douthat
I think at its best, it is just people sharing experiences with varying treatments, and doctors too. But there's just a crowd-sourced anecdata about, "Oh, did you try this combination?" "How did you feel when you took this drug?" "Oh, man, I herxed for a week after I went on that combination," this kind of thing. I said, but I would have tried anything. But when I tried things, I didn't actually try anything. I tried things that other people were trying and talking about. In experimenting, I was following along with other people who were conducting their own experiments, which, again, falls way short of the evidentiary standards demanded for medical treatment, and for good reason, in this country, but also is not a simply random way to treat persistent chronic illness.
So that's that world at its best. And then the problem with that world is the obvious problem, which is that once you fall off the map, as it were, of official medicine, it becomes easy to believe that all truth lies off the map. And everything that official medicine says can't be trusted, and either is a lie or is corrupted, in some sense. I think there's a strong sense in the chronic Lyme world that the doctors who are refusing to treat this aren't just wrong, but are somehow in the pocket of big pharma, some group. I think, fundamentally, to the extent that the consensus is getting things wrong, it's getting it wrong, for reasons of groupthink that are pretty common.
The challenge, least the challenge that I tried to set myself in living through an experience like this is you have to be able to find a balance where you're able to say, look, I feel like I know a lot more about what the establishment can get wrong. But that doesn't mean that the establishment is wrong about everything, or we wouldn't have had, you know, hundreds of years of amazing medical progress. But keeping that balanced view, I think is really, really challenging. And especially when you're in the throes of suffering. There's a reason I didn't write about it then, because I don't think I would have been a reliable narrator of the overall situation.
Emily Silverman
There's a turning point in the narrative where you've been subjected to these symptoms, and they've been migrating and they've been so out of control. And then this moment where you take an antibiotic called Tindamax. And then suddenly, you have this sense that you're reclaiming control. And you say, you became your own doctor, trying the different combinations of antibiotics. And like you said, this wasn't random. You say, "This work was intensely empirical and materially grounded, the most empirical work, in fact, that I have ever attempted in my life." Tell us about that. Because it sounds like that was a really big turning point that enabled you to start on the path to getting better.
Ross Douthat
Right, so to go a little deeper into the theory of chronic Lyme, a core part of the theory is that the Lyme bacteria is just really good at self-defense in various ways. One way is that it burrows deep into tissue, so it's harder for antibiotics to penetrate in large quantities. And the other theory is that it changes its shape, it takes on cyst-like forms. It forms biofilms with other bacteria that enable it to evade or resist antibiotic treatment. These are all the theories. And the theorized solution to that is that you need to find things—drugs, or herbs, or enzymes—that expose the bacteria in various ways. And these get called cyst-busters. The idea is that the bacteria changes its shape, maybe in the presence of certain things, and then the antibiotic can kill it. And that was basically my experience, where starting with Tindamax, and continuing with a bunch of over-the-counter things, I found things that I could take that it literally felt like I was releasing more stuff into my bloodstream, it wasn't like a Herxheimer reaction, I would just feel sort of more dissociated and weird, after I had taken them. And then I would take a traditional antibiotic like doxycycline. And I would get some kind of initially very strong Herxheimer-style reaction, which in my case—which is not always the normal case—involved, rubbing at the areas of my body that hurt, moving them, you know, needing to like move around, stomp my feet, all this extremely strange stuff.
But once that happened, once I figured that out, in the long run, it helped me actually get better. But in the short run, just the feeling of being able to predict what would happen when you took certain substances was really, really psychologically important. Because prior to that, you're just throwing things into your body and have no sense of like, what is helping what is not. No sense of predictability about what your symptoms are from day to day. So having that predictability was itself a breakthrough, even before I started to really improve. It's important to stress because in these interviews, as in my initial consultations with doctors, you want to stress your own reasonability. And as a reasonable person, I can see that all of this is very, very strange to describe, and I can only say that it was even stranger to experience.
Emily Silverman
In the book, you talk about gender bias and how medicine often ignores and dismisses the symptoms of women. And we actually had on an author Eleanor Clegghorn to talk about her book Unwell Women, which is about just that and the history of that. Have others told you that they've responded differently to your testimony because of your gender? How have women with chronic Lyme responded? Are they glad to have a male voice in the mix to help legitimize their narratives, which are so often blown off? What has the response to your story been having to do with being a man?
Ross Douthat
It's been interesting. The review in Slate of the book made a version of that sort of positive argument, saying that it's good to have Ross Douthat, not only a man but a conservative newspaper columnist, offering this account as a kind of legitimizing force for an illness that is easy to discount for reasons of sexism. I've had women say to me, "What does it feel like to have written a very female book, Ross?" I've gotten that reaction. A friend who has written her own book about chronic illness, Meghan O'Rourke, who I did a conversation with for the New York Times, she said, it was actually a relief to read about me hitting the wall with so many doctors, because she felt like they treated me the way they treated her. And maybe it wasn't just sexism, maybe there's something you know, sort of more universal about the experience that a man can have this kind of experience too.
Sexism, obviously plays an important role. Given the fact that most of the doctors I saw were men, the medical profession is not male-dominated anymore, but it still is male tilting. But I also think there's a sense, this is one of the theories for why women are more likely to present with chronic illness, that women are more likely to ask for help. And I've definitely met more men who have what they believe to be chronic Lyme symptoms who just say, "Yeah, I'm toughing it out. You know, I want to get off the medical carousel, I got sick of talking to doctors, I'm done." Women are more likely to sort of go on asking for help, which, in a way undercuts them because it means the doctors see more women asking for help and say this is a female problem. But then it's also the women who in the end are maybe more likely to get help. And asking for help is good. These kinds of conditions are not things that you should just have to simply live with.
Emily Silverman
Earlier, you were talking about what it means to get sick and to fail to get better, and how friends and family may be willing to rise to the occasion when their loved one is experiencing a brief illness, something that's time-bound, but how it's less clear how to support someone whose disease grinds on and on, especially if that disease is mysterious as this. So what kinds of actions or gestures did you find most helpful from those around you? You give one anecdote in the book about the friend who visited. How do we support our brothers and sisters on this earth who are dealing with things like this?
Ross Douthat
The heart of the challenge is that really, in a lot of these instances, all that you can offer is your presence. Most of the time, what the sick person needs is someone to vent to, someone to talk to, someone to be there. But in offering that presence, you often are going to feel like you aren't offering anything, because there's no immediate improvement. It's not like the sick person seems much happier when you're there. They're not happy, but you are still helping them. From the friend's perspective, that's an important thing to keep in mind—that just because it doesn't seem like you're immediately helping someone with your presence, or you're listening, doesn't mean that you aren't helping them. And especially in one particular way, which is that quite often the sick person has people around them, who are trapped with them. In my case, that meant my wife. In other cases, it might be a caregiver or a parent, someone who is immediately there all the time, and can't get away from the sick person. And that person is a big victim of the illness too, in the sense that they are constantly absorbing the really toxic energy that an unhappy sick person generates. And so when you're one degree removed, offering yourself in that person's place for an hour here or an afternoon there. It was really important, for instance, to the health of my marriage, that I could go vent to my father instead of to my wife sometimes. So that I think is a useful way for people who are not the spouse, not the person in intimate contact. They're not just helping the sick person, they're trying to sort of spell the person who is suffering in their own way from the illness profoundly.
Emily Silverman
At the end of the book, you address the medical world. And you say, we're not asking for a new certainty to replace the old one nor the endorsement of a single protocol or theory. All we're asking for is for doctors not to simply wash their hands of us, but to instead embrace the experimental spirit that chronic sickness seems to obviously require. And I read that a few times, and I was trying to think about how the medical community can do better. One way would be to do more research. And you mentioned earlier that it's such a difficult disease to study because it's so heterogeneous, the treatment is so varied and can be so prolonged. But is there a study that you could envision running that would shed light on how to treat chronic Lyme?
Ross Douthat
So right now, the sort of gold standard, NIH studies are ones that have taken the official four to six week protocol of antibiotic treatment, and just sort of extended it for in most of them like six to eight more weeks. I think one of them did go almost to three months. Based on both my experience, my reading, everything else, I would say that a trial that was really testing, the chronic Lyme theory would would need to run for six months or nine months to be really responsive to what patients are experiencing and what doctors are doing. And there are I think some trials that have worked with some of the weird things that chronic Lyme doctors do like "pulsing," where you give people antibiotics for two weeks or three weeks, and then you stop for two weeks and then you go back again. This is another way of getting at that idea that you need the bacteria to come out, but I think they've been in test tubes, not in human subjects. I'm not as up on the literature as I was three or four years ago, when I was reading it all the time. But I think that's the combination of what you would want from a trial—you would want the trial to run longer, and you would want it to try out one or two of the things that the chronic Lyme docs are trying, whether it's pulsing, whether it's multiple antibiotics, something along those lines. I think there are real rewards in this, you get to help people who are in incredibly bad shape get better, which is obviously a nice thing. And there is an element of the experimental that I would think would be quite interesting. It was interesting to me to experiment on myself. So I think it would be more interesting to do it if you didn't have to, you know, if you weren't the one suffering yourself. So I feel like if I were running a medical school, I would say I'm going to set up a special program to train people who will be long term chronic illness doctors, if I were a donor to a medical school, that might be what I would endow.
Emily Silverman
Yeah, it's clear that more needs to be done in terms of research around chronic Lyme, different studies, longer studies, perhaps randomized control trials. But that could take years to do. It could take a really long time for the paradigm to shift. So what do you see happening now? How can the medical community support chronic lyme patients today?
Ross Douthat
I think the simplest thing would be to say that we should normalize something that's in between the extremity of IV antibiotics, the five antibiotic cocktail, and so on, and the four weeks of doxycycline, and we're done. There are a number of people who get a chronic form of Lyme disease, who are not as sick as I was, and who need an extra six weeks of doxycycline, and then they're better. I've met and talked to a lot of people for whom the experience was like that. Or once they went just a little bit beyond the official protocols, they started to improve. So I think there's room for the kind of doctors who would be naturally skeptical of the more extreme things that I did to become one standard deviation more flexible in the treatments that they try. And I think you would still be having patients who felt abandoned by that, who would end up where I ended up. But you'd also have a group of patients who would be helped and who also wouldn't get worse. The key problem with chronic Lyme is that if you miss the diagnosis, tics are tiny, they're really tiny. You can get bitten by a tick and really not know it for a long period of time. And people do get worse, they degenerate, they deteriorate. I've been lucky, there are people who have neurological damage that does not repair itself easily. And so if you catch even some percentage of those people before they deteriorate, just by giving them an extra month of treatment at the start, I think you could do a lot of good just there.
Emily Silverman
Well, I think this is a good place to end. Any final messages you'd like to share with our community of healthcare workers?
Ross Douthat
People always ask what do you think of the medical establishment. And when all that is said and done, and I obviously carry now a ton of skepticism and a ton of baggage about official medicine that I didn't carry before. But at the same time, the reality is that the core thing that got me better was antibiotics, the central weapon in the modern medical arsenal, the people who got me better were people who were really on the fringe, but most of them were prominent medical school trained doctors. And just in recounting the strangeness of the story, I can see why there is so much skepticism about this kind of illness in the medical community. So all of which is to say, the book is written as a critique and as a plea for help. But it's also written with serious respect for everything that modern medicine gets right in all the ways in which, even though I had to go somewhat outside the mainstream to get it, it was forms of modern medicine that did help me.
Emily Silverman
I have been talking to Ross Douthat about his book, The Deep Places: A Memoir of Illness and Discovery. I highly recommend it, especially if you find yourself wanting to look away from narratives about chronic Lyme, all the more important to look at them squarely, because you'll almost certainly learn something. I know I did. So check it out. And Ross, thank you so much for coming on to the show to talk about your book and your story.
Ross Douthat
Thank you so much for having me. It was a pleasure.