Memories of illness and discovery
Author: Ross Douthat
The early chapters of “The Deep Places” take place as the first act of a horror film. Ross Douthat (a New York Times columnist) and his wife, who feel an attraction at home and burned out from life on Capitol Hill, buy a 1790s farmhouse on three acres of pasture in Connecticut. He feels optimistic, maybe a little smug. In the afternoon, when their last inspection was at home, he walks back to the meadow, observes the deer having fun, and thinks that the purchase “seemed like confirmation that we were on the right track, that I had planned and worked and conquered things that I wanted them and I deserved them. “
But the scene is colored with horror: something is hiding in these forests. Back in DC, Douthat has a swollen lymph node, a stiff neck, and strange vibrations in his head and mouth. The emergency physician, to whom he first reports, diagnoses him with harmless boiling. A few weeks later, at dawn, he was in the emergency room with the worrying shutdown of his entire body, “as if someone had accidentally turned the dials in all my systems.” The emergency room doctor suggests stress as the culprit – also at the next visits the internist, neurologist, rheumatologist and gastroenterologist. The psychiatrist, his 11th doctor in 10 weeks, disagrees.
It is only after Douthat ends up moving north to Connecticut, the namesake of Lyme disease, that local doctors find it obvious that he is suffering from something that is transmitted from ticks. Tests eventually reveal Lyme antibodies (though not enough for a definitive diagnosis) and a concomitant infection, Bartonella.
The course of treatment is less obvious than will be predicted by anyone familiar with the so-called Lyme Wars. Long-term use of antibiotics for permanent symptoms has known risks and hitherto unproven benefits. So the official advice is basically to wait. Many patients and another group of physicians have waived this advice with different regimens and outcomes.
When Douthat’s health declines in horrific ways, a darkness sets in over his “terrible” house, which turns out to be a fixer who doesn’t have the energy to fix it. He thinks of fairy tales and dreams of wandering around a gothic mansion haunted by vampires. His wife, who works on her own book and is pregnant with the couple’s third child, describes their situation as “just like ‘Shine’ – only we’re both writers.”
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Dout who sees symbols everywhere; it tells a story not only of its own illness, but also of the stories we tell each other, secular and religious, in order to give meaning to the disease. Because of this, he is a confident narrator. She knows she has remedies that many suffering patients do not – including the benefit of doubt not afforded by older women who often report chronic Lyme symptoms.
Douthat also knows that he is a frustrating patient, “a careless experimenter over whom doctors despair, and that pharmaceutical regulations exist to protect and deter.” He rides around the doctors and ignores their advice. He buys antibiotics at an online pet store and combines them with a handful of herbs and enzymes he reads about on online forums.
Douthat writhes in pain on the bathroom floor, breaks in half a speech, or stumbles into empty churches to pray for help, Douthat reveals himself in ways that could make an impact. Nothing is braver to share his story than the women who wrote Lyme Memoirs before him, including Pamela Weintraub (“Cure Unknown”) and Porochisto Khakpour (“Sick”). Nevertheless, in today’s hyper-male conservative culture – where illness is a sign of weakness – this book is an almost radical act of humility. He argues that the tick-borne disease needs more research and that sufferers deserve more respect.
The problem is that Douthat also wants to present his reckless journey as a map. His revelation: “Given the stock of antibiotics, the range of over-the-counter medications available on Amazon, and the massive data of hundreds and thousands of Lyme patients sharing their experiences online, they could actually become their own doctor, mix and coordinate with a gauge the reaction of my body to different combinations, like researcher Lyme working on a study with a sample size, ‘N’, only 1. “
This self-medication, he adds, “was in its own way strongly empirically and materially grounded – in fact the most empirical work I have ever tried in my life.” (When I compared this approach to Khakpour’s introspective memories, I kept thinking about couples therapy so that women would rather talk about their problems while men would jump in to solve them.)
Venn’s diagram of anti-establishment overlaps more and more left and right, and Douthat’s experiments bring him right to its center. One chapter talks about the conspiracy theory that the Lyme bacterium escaped from a military biological weapons laboratory on Plum Island, New York. The other somewhat justifiably follows its embrace of intravenous vitamins, salt in capsules, magnetotherapy, and the Rife apparatus, which is supposed to use sound frequencies to break down pathogens in the body.
The next attack of undiagnosed Covid-19 and the stumbling blocks of scientists as they struggled to understand the new virus only solidified Douthat’s distrust of institutions such as the Centers for Disease Control and Prevention and the Food and Drug Administration. “From the beginning of the pandemic to its unfinished end,” he writes, “there have been freaks on the Internet who have been more reliable guides to what’s going on, what’s possible, and what should actually be done like Anthony Fauci or any other official source of information. “
Just because this feeling of “I’m going to do my own research” at the moment doesn’t mean it’s less harmful. On the contrary, a pandemic is the least useful time to defend the primacy of patient-designed protocols and Internet anecdotes against actual science – imperfect, slow, and insensitive. Even in 2021, not all epidemiologists.