There’s been a small boom of stories lately about what it’s like to live with chronic Lyme, the baffling disease that “has no consistent symptoms, no fixed criteria, and no accurate test.” That’s how Molly Fischer describes it in a feature that appeared in New York magazine in July, which was followed by Meghan O’Rourke’s reported first person story in the Atlantic’s September issue. That piece detailed her own long struggle to understand what was plaguing her, and her admission that, though she was ultimately helped by a chronic Lyme diagnosis and treatment, she’s still not quite convinced. These come after a memoir last year, Sick, by Porochista Khakpour, that was met with both strong praise and criticism from people who think chronic Lyme does not exist at all, a controversy that Slate covered by arguing that it is possible modern medicine is still figuring this disease out.
Since chronic Lyme has long been a fringe diagnosis, and one that, as Fischer’s New York piece shows, makes patients susceptible to the advice of unscrupulous “Lyme literate” doctors, I was curious: What do physicians think of these accounts, and the seeming mainstreaming of the disease? Both acute Lyme (because of climate change) and awareness of chronic Lyme (because of these stories) are on the rise. That makes it likely that more people living with tough sets of undiagnosed symptoms might start asking about chronic Lyme. So, I spoke to three doctors to understand how physicians think about it. (Two have not—yet—had patients who claim to have chronic Lyme.)
All agreed that something is going on with the patients in these stories, but, predictably, no one had a firm answer on whether a tick bite was responsible, the cause was something else, or there were several things causing distinct illnesses that are all being placed under the “chronic Lyme” banner. “I don’t think that they are loonies,” said Sterling Ransone, a family physician in Deltavilla, Virginia.
“I wish I could be the one to say, ‘Oh, yes, I have the answer for you,’ “ said Reid Blackwelder, a family physician in Kingsport, Tennessee. “But the reality is there’s not one.” He has a couple patients who think the diagnosis might apply to them. He’s been unable to provide a clearer diagnosis.
Even with an understanding doctor, things aren’t straightforward. But there are pitfalls of medicine and health care that make getting to the bottom of strange symptoms additionally difficult and make running into the office of a doctor who is overly happy to apply a chronic Lyme label all too appealing. “When I see a patient who’s dealing with something like this, I’m going to be open to exploring it as best as I can,” Blackwelder said. But doctors simply do not get much time with patients with which to do a deep dive into symptoms. “Office visits are what, 15 minutes?” said Ransone. Citing pressure from employers to get patients in and out quickly, Ransone said he can easily imagine the kinds of brisk conversations that lead to suffering: “ ‘Oh you had a tick bite three months ago, you’re aching, that’s not an emergency, off you go.’ We, from a physician standpoint, are encouraged by employers to get people through quickly.”
He pushed back on the idea that physicians who dismiss patients who think they have chronic Lyme are doing so with any kind of purposeful disbelief. “They see it as the physician doesn’t care,” Ransone said of folks who go to expert after expert who can’t make them better. In his view, most physicians are really trying their best, but “what the patient hears is ‘I can’t help you, this doesn’t exist.’ ” He added, “It’s a communication problem.”
Blackwelder advises that a solution to this problem could be that doctors can actively share “the frustration of not being able to come up with an answer. The hard part is how comfortable physicians are saying, ‘I don’t know what this is either.’ ” And it can stall communication if patients are strong-headed about what they think they have, a tendency that can be bolstered by articles linking mysterious symptoms to a particular answer. “Physicians don’t like it when patients come in and say, ‘I think I have x,’ ” said Kate Tulenko, a pediatrician and the founder of Corvus Health, which, among other services, provides physicians and patients with second opinions.
But brisk visits and egos are just small parts of the overall structure that makes figuring out a tough case difficult. “Our medical system is just not set up for diagnostic dilemmas,” said Tulenko. She notes that physicians who order tons of tests, on balance, might be penalized for it. They might not be up on the latest reading or have time to do a literature deep-dive on behalf of a patient. Care tends to be siloed—if you go see a string of specialists, they won’t all then sit down in a room together and compare notes to crack the case.
The fact that there is no clear-cut proven treatment for chronic Lyme is another problem. Patients are essentially left to do experiments on themselves. But doctors have to sit with the directive to “do no harm,” and they have to think about not just whether a treatment will solve problems but whether it will create new ones. “Physicians are uncomfortable treating for a vague issue for concerns of side effects,” said Tulenko. The main treatment used for chronic Lyme at the moment seems to be antibiotics. These are not neutral drugs. In the Atlantic, O’Rourke describes feeling terrible after taking them (before, eventually, feeling much better). Physicians are hesitant to give out antibiotics without a very definitive reason to, both because they can contribute to the overall problem of antibiotic resistance and they can be bad for the good bacteria that live inside each of us (according to the Centers for Disease Control and Prevention, severe diarrhea and colon damage are some of the more worrisome side effects). “Sometimes the patients don’t understand that I’ve seen people who have been harmed by antibiotics,” said Ransone.
So what can patients do? “My hope is that most people will try to include a trusted primary care physician who can help them navigate the process and interpret what’s going on,” said Blackwelder. “That’s what comes across when I read all these articles.” Finding a doctor who is compassionate, listens, and is willing to give a patient the option of a risky treatment after laying out all the options and side effects isn’t easy. But until there’s a clearer-cut answer on chronic Lyme, it may be the best one can hope for.