How I Became a Science Experiment

Trust the science. That was the mantra that many people repeated in the face of the Covid-19 pandemic — an entire worldview condensed into three words, with many implications. Trust Anthony Fauci, not Donald Trump. Trust authoritative medical bodies, not random doctors on the internet. Trust official knowledge, not conspiracy theories.

In some ways this worldview has been vindicated — the work of science brought forth vaccines with startling rapidity, while vaccine resistance has led to many unnecessary deaths. In other ways, the Covid era has offered case studies in why so many people mistrust official science — like the drip-drip-drip of information that has taken the so-called lab-leak theory of Covid’s origins from censored conspiracy theory to plausible and mainstream hypothesis.

But in the early days of the pandemic, the problem was that there was so little official science yet in which to put our trust. Instead, because Covid was a novel pathogen, we lived in a twilight zone for months, dealing with urgent questions to which there was no clear answer: how the disease spread and who was most at risk, whether masking or handwashing mattered most, whether to put patients on ventilators or try to keep them alive without them, what kind and variety of symptoms were associated with the sickness, what kind of therapeutic drugs should be thrown into the fight. We had to act in that twilight — as citizens, as doctors, as patients — without certainty, following supposition, speculation and hypothesis. And to the extent that confident medical pronouncements were issued in those days, they often had to be amended or reversed.

The experience of those chaotic months offers one way for outsiders to understand the world of chronic illness. Because to fall into that strange realm, as I did more than six years ago, is to live in the twilight all the time.

If you haven’t passed into this country, it can seem like a world where science is fundamentally mistrusted or rejected, because the chronically ill end up seeking out so many fringe ideas and treatments, trying out so many strange theories, bending an ear to so many oddballs and cranks.

But the reality is more complex. For chronically ill people trying desperately to get better, actual science — the world of hypothesis, experiment, result — matters in the most urgent way. It’s just that they have entered a territory where there aren’t any clear authorities, any definite consensus. And so a lot of the strange things they end up doing are just a kind of home-brew versions of the scientific method — what it looks like when ordinary people have to effectively become their own doctors and do science on themselves.

That is part of what happened to me, in the months and then years after the sudden summer-of-2015 descent into insomnia, disintegration and blazing pain that I wrote about last weekend. In that summer I experienced a truncated form of what many people with chronic illness experience over many, many years: not a medical system that offers answers that the patients then bullheadedly reject, but a system full of well-meaning doctors who offer you exactly nothing — no diagnosis whatsoever, just a lot of murmurs about stress and mystery when the blood tests come back negative and a suggestion that you simply wait and hope the pain somehow goes away.

In my case, and I was fortunate, this changed when we moved from Washington, D.C., to Connecticut. Soon I began seeing doctors who recognized my strange situation as a likely case of Lyme disease, a tick-borne illness probably acquired as we explored the rural property that we had bought in a flight of fantasy — our dream house then, soon enough our Overlook Hotel.

The path to diagnosis for the chronically afflicted is often much more grueling. Even when they finally find their way to sympathetic doctors who actually help them pursue their case, they still have to contend with wild uncertainty about which leads and possibilities to follow — with broad and contested categories like chronic fatigue syndrome and fibromyalgia down one path, and the search for incredibly rare and obscure syndromes down another. (As a guest-host for my colleague Ezra Klein’s podcast, I interviewed the journalist and poet Meghan O’Rourke, a fellow chronic-illness sufferer whose story is somewhat similar to mine — except that in her case it was more than a decade before she even began to get plausible diagnoses.)

But even having a provisional idea of what was wrong with me, as I did by the autumn of 2015, didn’t mean that I could settle back and trust the science, because in the case of Lyme, the science has spent several decades in a state of civil war.

On one side of these “Lyme wars” is the more established and official perspective, which states that a short course of antibiotics suffices to clear up most Lyme infections. If patients still have symptoms afterward, they should assume that they will eventually resolve and that they have some kind of residual inflammation or autoimmune condition — and they definitely shouldn’t continue taking antibiotics as if the infection is still there.

On the other side you have the outsider faction, the doctors who insist that no, Lyme symptoms persist in so many cases — and everyone concedes that they do often persist — because the infection itself is still in there, still in need of treatment. And the treatments these doctors deliver are incredibly complex: Because every patient is different, and every infection might include not just the Lyme bacteria but other so-called coinfections as well, they devise bespoke combinations of antibiotics, “cocktails” of drugs with different modes of action, while sometimes urging dietary changes and herbal regimens and Epsom salt baths and all kinds of supplements as well.

So the dissenting view is that treatment for chronic Lyme isn’t just a battle but a long and grueling war. Meanwhile, the orthodox view is that this supposed “war” is a high-risk intervention against a disease that may not actually exist, and the dissenting doctors are basically war profiteers, exploiting patients desperate for a cure. And both sides marshal scientific evidence in their favor: The dissidents invoke research showing that Lyme bacteria can, in fact, persist in animal subjects even after they’re dosed with a course of antibiotics; the establishment points to studies showing that treating chronic patients with intravenous antibiotics doesn’t seem to yield much benefit.

As a suffering person, then, you have to choose which form of science to believe.

In my case, that meant choosing between two doctors whom I saw early in my odyssey.

The first, an infectious disease specialist in New York City, had an avuncular, reassuring manner. Yes, he said, I probably had Lyme — my symptoms fit, the blood tests missed lots of cases, he saw people like me all the time. But no, I didn’t need to worry that much about the disastrous chronic cases I was now reading about on the internet. Yes, some Lyme cases took more than a few weeks to clear, and he usually prescribed antibiotics for a little longer than the official guidelines. But that would be enough, he promised: I would be much, much better by the holidays, and well within a year.

The second doctor had a wood-paneled office one town over from our new Connecticut house, more like a den than a clinic, and books and pamphlets littering the waiting room, each seeming to offer a different theory on how one might treat an entrenched case of Lyme. He talked to me for 90 minutes, took copious notes, asked a thousand questions, and informed me that chronic Lyme was an epidemic, wildly underdiagnosed and totally mistreated. Could he get me better? Probably, but I was obviously very sick, and it would take a while. Most of his patients took high doses of antibiotics for around a year; I might need more; some needed years and years of treatment.

The first doctor reassured me; the second doctor frightened me. So I chose to believe the first one, to trust his version of the science, and for months I followed his prescriptions — while also seeing doctors who told me that even his approach was too aggressive, that if I had Lyme disease at one point I no longer did, and that I should stop the antibiotics altogether and wait for my body to recover on its own.

But the body’s experiences are their own form of empirical reality, and as a patient you can’t follow a scientific theory that doesn’t succeed in practice. And in the end the reassuring doctor’s theories didn’t work — I didn’t get better on his steady dose of antibiotics, the constant pain didn’t go away — while the advice to go off antibiotics entirely led to disasters, where I stopped the drugs and disintegrated quickly.

So I went back to the doctor who frightened me, feeling that otherwise I could be sick forever, sick until I died. And the rest of the story unfolded, over a very long period of time, roughly as the dissenting faction of Lyme doctors would have predicted.

There were many false starts and blind alleys, including a brutal summer when I took intravenous antibiotics for three months without improvement, and a long winter of rural imprisonment for my family with a father whose health was gone and whose sanity seemed doubtful.

But after about a year of trying different combinations of antibiotics and extremely high doses, I finally found a cocktail that first made my symptoms more predictable, and then enabled me to begin slowly gaining ground, month upon month and year upon year — in a process that has taken me from almost-constant pain to something approaching normal life and health.

So that dissenting doctor — and others like him, and many researchers doing work on Lyme disease treatments outside the official line — saved my life. But I also saved my own life, because I was the only one who could actually tell what treatments made a difference. So I had to act like a doctor or researcher myself, reading online for ideas and theories about drugs and supplements, mixing and matching to gauge my body’s reaction to different combinations — like a scientist working on a study with a sample size, an “n,” of only one.

The experience was extraordinarily grueling — a stripping and peeling feeling, with each regimen creating a feeling of purgation, followed by temporary relief, followed by doing it all over again. But it always felt intensely empirical and materially grounded — the most empirical work that I have ever attempted in my life.

At times I can feel enraged by the contrast between this grueling and (to me) clearly necessary work, the years of treatment and slow recovery, and the do-nothingism that much of the medical establishment prescribed — especially since there are so many people without the resources to keep searching for doctors, to keep trying new treatments, for whom medical do-nothingism is just a push away into the dark.

But at the same time the extremity of the experience also made it clear why the official, establishment view persists. Because modern medicine demands replicability and prefers simplicity in treatment, plus a strong dose of “first, do no harm” caution in dosages and duration — and what I ended up doing was way outside those bounds. And it was hard to imagine how my experience, the years of personalized and sometimes reckless experiments borne of urgency and desperation, could be translated into a chronic-Lyme prescription that was testable and replicable along the lines that official medicine requires.

Meanwhile, it was also easy to see another way that the establishment-outsider divide sustained itself, because the deeper I went into the world of chronic sickness, the more I could feel the tug of paranoia, the sense that the world is not as I had imagined and who knows what else might be true.

I could feel the experience of illness and bafflement remaking me, in other words, and I could see in other people in the chronic-illness world how far this remaking could go — beyond just taking extra antibiotics and doubting the wisdom of the Centers for Disease Control and Prevention, into a more comprehensive rejection of any establishment wisdom, any mainstream authority.

Whether it’s possible to resist this pull, or to integrate fringe experiences with a recognition that the center also gets things right, is a central question for our society these days — in politics as well as medicine. It will be the subject of the final essay in this chronic-illness trilogy next week.

This essay is adapted from the new book “The Deep Places: A Memoir of Illness and Discovery.”

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