The Uncertain World of Chronic Lyme with Ross Douthat
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What is chronic Lyme disease and why is it considered controversial?
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Hi, nocturnous 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.
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 Nocturnous Conversations. I'm Emily Silverman. Today I speak with Ross Douthit 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 Rian Solomon of Grand New Party. He's the 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.
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 in pre-K, my mind and fingers kept circling back to the discomfort on my neck.
I had seen a dermatologist for a wart 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 script 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 doctors' visits had simply vanished, unexplained, but attributed shruggingly to the stress of my new life and the commute.
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Chapters
8 chapters
1
What is chronic Lyme disease and why is it considered controversial?
0:00–5:42
2
How did Ross Douthat first notice his symptoms and what initial medical response did he receive?
5:42–12:17
3
What clues led Ross to suspect Lyme disease as the underlying cause of his illness?
12:17–18:49
4
Which doctors and treatment strategies did Ross try, and how did their approaches differ?
18:49–24:34
5
What is the Herxheimer reaction and why is it important for chronic Lyme patients?
24:34–31:23
6
How does the online Lyme community shape patients’ experiences and treatment choices?
31:23–38:08
7
In what ways does gender bias impact the perception and treatment of chronic Lyme disease?
38:08–44:45
8
What future research and medical strategies does Ross propose to better address chronic Lyme?
44:45–51:04