Suffering From Confounding Symptoms, a Patient Treats Himself

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By Sara Austin

THE DEEP PLACES
A Memoir of Illness and Discovery
By Ross Douthat

The early chapters of “The Deep Places” unfold like the first act of a horror movie. Feeling the pull of home and burned out by life on Capitol Hill, Ross Douthat (a New York Times columnist) and his wife buy a 1790s farmhouse on three acres of Connecticut pasture. He’s feeling optimistic, maybe a little self-satisfied. On the afternoon of their final home inspection, he wanders into the meadow out back, watches the deer frolic and reflects that the purchase “felt like confirmation that we were on the right path, that I had planned and worked and won the things I wanted and that I deserved them.”

But the scene is tinged with dread: Something is lurking in those woods. Back in D.C., Douthat has a swollen lymph node, a stiff neck and strange vibrations in his head and mouth. The urgent care doctor he sees first diagnoses him with a harmless boil. A few weeks later, he is in an emergency room at dawn with an alarming full-body shutdown, “as if someone had twisted dials randomly in all my systems.” The E.R. doctor suggests stress as the culprit — as do, in subsequent visits, an internist, neurologist, rheumatologist and gastroenterologist. A psychiatrist, his 11th doctor in 10 weeks, disagrees.

Only after Douthat completes his move north to Connecticut, namesake of Lyme disease, does it seem obvious to local doctors that he is suffering from something tick-borne. Tests eventually reveal Lyme antibodies (though not enough for a definitive diagnosis) and a co-infection, Bartonella.

The course of treatment is less obvious, as anyone familiar with the so-called Lyme Wars will anticipate. Long-term antibiotic use for persistent symptoms has known risks and, thus far, unproven benefits. So the official advice is, essentially, to wait it out. Many patients and a dissenting faction of doctors have bucked this advice, with varying regimens and results.

As Douthat’s health declines in harrowing ways, a darkness settles over his “haunted” house, which turns out to be a fixer-upper he has no energy to fix. He ruminates on fairy tales and dreams of wandering a gothic mansion, chased by vampires. His wife, working on a book of her own and pregnant with the couple’s third child, describes their situation as “just like ‘The Shining’ — except we’re both writers.”

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    Douthat sees symbols everywhere; he is telling a story not only of his own illness, but also about the stories we tell ourselves, secular and religious, to make sense of illness. This makes him a self-aware narrator. He knows he has resources many suffering patients don’t — including the benefit of the doubt not afforded the older women who tend to report chronic Lyme symptoms.

    Douthat also knows he is a frustrating patient, “the kind of heedless experimenter that doctors despair over, and that pharmaceutical regulations exist to protect and deter.” He cycles through physicians and ignores their advice. He shops for antibiotics from an online pet store and combines them with fistfuls of herbs and enzymes he reads about in online forums.

    Writhing in pain on the bathroom floor, breaking down halfway through a speech or stumbling into empty churches to pray for relief, Douthat lays himself bare in ways that can be affecting. He is no braver for sharing his story than the women who have written Lyme memoirs before him, including Pamela Weintraub (“Cure Unknown”) and Porochista Khakpour (“Sick”). Still, in today’s hypermasculine conservative culture — where illness is a sign of weakness — this book is a near-radical act of humility. He makes his case that tick-borne disease needs more research and its sufferers deserve more respect.

    The trouble is that Douthat also wants to present his reckless journey as a road map. His revelation: “Given a stockpile of antibiotics, the array of over-the-counter medications available on Amazon and crowdsourced data from hundreds and thousands of Lyme sufferers sharing their experiences online, I could effectively become my own doctor, mixing and matching to gauge my body’s reaction to different combinations, like a Lyme researcher working on a study with a sample size, an ‘N,’ of only 1.”

    This self-doctoring, he adds, “was in its own way intensely empirical and materially grounded — the most empirical work, in fact, that I have ever attempted in my life.” (Comparing this approach to Khakpour’s introspective memoir, I kept thinking of the couples-therapy trope that women prefer to talk through their problems while men leap to solve them.)

    There is an increasingly overlapping Venn diagram of the anti-establishment left and right, and Douthat’s experiments land him squarely in its center. One chapter floats the conspiracy theory that Lyme bacteria leaked from a military bioweapons laboratory on New York’s Plum Island. Another somewhat apologetically traces his embrace of intravenous vitamins, capsuled salt, magnet therapy and the Rife machine, which is said to use sound frequencies to break up pathogens in the body.

    A subsequent bout of undiagnosed Covid-19, and scientists’ stumbles as they’ve worked to understand the new virus, have only hardened Douthat’s distrust of institutions like the Centers for Disease Control and Prevention and the Food and Drug Administration. “From the beginning of the pandemic to its still unfinished end,” he writes, “there were weirdos on the internet who were more reliable guides to what was happening, what was possible, and what should actually be done than Anthony Fauci or any other official information source.”

    That this “I’ll do my own research” sentiment is of the moment does not make it less damaging. On the contrary, a pandemic is the least helpful time to argue for the primacy of patient-designed protocols and internet anecdotes over actual science — imperfect, slow and unfeeling as it may be. Even in 2021, not everyone is an epidemiologist.

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