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.