What was left unsaid in the Douthat/O’Rourke discussion on the "edge of medical knowledge"
Updated: Feb 14
About an hour into a discussion on how the U.S. health system manages (or fails to manage) chronic disease, NY Times op-ed columnist Ross Douthat asks a question: if not this healthcare system, then what?
Douthat was speaking with journalist Meghan O’Rourke in a podcast episode that is worth a listen for anyone grappling with chronic disease. Both Douthat and O’Connell suffered from Chronic Lyme Disease, and both spent years trying to figure out how to treat their symptoms (Both have also written books about their journeys).
As Douthat notes early on, neither he nor O’Rourke are exactly unbiased observers. On the other hand, both have first-hand experience with debilitating symptoms which are a lot like those faced by people suffering from Long COVID.
Douthat and O’Rourke’s discussion touched on many of the themes I have written about in this blog: the problem of incentives in traditional medicine, the lack of time in most traditional care settings to fully investigate a patient's history, and the need for a real, partnership-oriented model to investigate and manage root causes of chronic disease.
Yet one thing Douthat and O’Rourke did not talk about is the integrative medicine model as a potential solution.
Meghan O’Rourke’s Chronic Lyme Story
When she was 21 years old, O’Rourke started having symptoms ranging from strange electric shocks that felt like “tiny needles” pricking her all over body, to intense vertigo, hives, joint pain, night sweats, and more.
Doctors said her lab work was perfect, except for some “random” auto-immune markers. These came and went, but were ultimately inconclusive. She felt like she was “on the edge of medical knowledge.” For the next ten years, O’Rourke came up with various explanations for her range of symptoms, at one point concluding that perhaps she was just a sensitive artist, or overworked, or a hypochondriac.
She says in the podcast:
In that period it was really heartbreaking to see doctors. And it was heartbreaking not because they dismissed me entirely. They were really nice. I had great doctors. But they just weren’t in a system that was set up to help them become the kind of detectives that they were going to need to be to figure out what was wrong with me.
Another problem was that, after a while, O’Rourke herself started withholding the full story of her symptoms because she didn’t want to seem like a “trouble” patient. She wanted specialists to take her seriously, so she would only tell them the one or two most serious symptoms. This meant no specialist ever got the full picture.
Finally, after ruling out many other hypotheses (I am shortening the full story here), O’Rourke took a test to see if she had Lyme Disease. The test has bands on it that activate in the presence of antibodies. O’Rourke’s test came back with three bands activated. But officially, CDC guidelines require five bands to activate for diagnosis. Officially, the test was negative.
That left O’Rourke in a strange position. Was she going to become a Lyme Disease patient? It was the unifying diagnosis that would explain everything. She was presented with uncertainty. Would she put herself on antibiotics, despite the “officially'' negative test?
Ross Douthat’s Chronic Lyme Story
Douthat’s story is different. He contracted Lyme Disease shortly after moving from Washington D.C. into New England. He had phantom heart attacks, lost 40 pounds, couldn’t eat, and was sleeping only one hour a night. Unlike O’Rourke’s ten-year mystery, Douthat’s severe symptoms very quickly led to a Lyme Disease diagnosis by local physicians.
However, the first round of antibiotics stabilized his symptoms, but didn’t end them. For the next three to five years, Douthat experimented with what mix of treatments would bring him from “being stabilized but still suffering tremendously” to actually getting better and back to normal life. In experimenting on himself, Douthat also felt like he was on the edge of medical knowledge.
The Battle Within Medicine Over Chronic Lyme
One of the problems with diagnosing and treating Chronic Lyme is that there is disagreement in medicine over whether it even exists.
In some ways, the story of Lyme is the story of the germ theory of disease—which Douthat calls “the basic foundation of the success of Western medicine.” In germ theory, you find an invading pathogen, you find something that might treat it, and then people either get better or they don’t. Crucially, you can test the treatments using double-blind placebo-controlled studies.
When Lyme was discovered in the 70s it fit into this germ theory box perfectly. You catch Lyme Disease from ticks that embed bacteria in your system, causing a fairly consistent set of symptoms. A lot of people get a bull’s eye rash around the site of the bite. The disease offers a very clear diagnostic criteria and a clear treatment: antibiotics. Most people who receive this treatment get better, although a small minority don’t.
The people who don’t get better have led to a separation in the medical community. The mainstream consensus is that Lyme is a serious disease but also relatively easy to diagnose and treat, but there is another group of people who rely on “a somewhat eccentric set of doctors” (Douthat’s words) to get treatment for Chronic Lyme. For these people there are no studies. Thus there is no “science,” on how to treat it. In fact, the CDC doesn’t even recognize it. Instead, they call it: Post-Treatment Lyme Disease Syndrome, as if it were psychosomatic.
There simply is no definitive scientific guidance for people like Douthat or O’Rourke, who had possibly contracted Lyme 15 years earlier but was never treated. What was she supposed to do? There were no studies, no science. She too had to start experimenting on herself.
Lessons for Chronic Lyme, Long COVID, and chronic disease generally
Unfortunately, the traditional medical system is not set up to study the kinds of regimens that both Douthat and O’Rourke created for themselves. There is no easy way to create a study that takes place over three, or five, or fifteen years, that experiments with the mix of drugs, herbal supplements, and other treatments that the pair tried over that time.
But both of them finally know what works for them.
Still, the question is what can be done to better understand why diseases like Chronic Lyme and Long COVID persist, and how we can better treat chronic disease in this country? O’Rourke suggests two things: one is creating research institutions more willing to take chances, perhaps through federal funding, kind of like seed funding for tech companies. Another is to ensure and facilitate multidisciplinary care teams.
Both of those are good ideas, and many hospitals and health systems are already focused on multidisciplinary care. But neither of them mention integrative medicine, even though integrative medicine addresses many of the problems revealed by their stories.
Integrative medicine is a good model for addressing chronic disease
Integrative medicine provides the space necessary to investigate a patient’s symptoms over a long period of time, so that we can get to their root causes. At Dignity Integrative, we begin with a complete personal and family history, followed by a 90-minute initial consultation. After that, we check-in on a monthly basis to examine progress and adjust as necessary. This is a far cry from the fifteen minutes or half hour you might spend with a primary care physician once a year.
Integrative medicine is also progressive and forward-thinking about treatments and potential pathways for disease. We understand that just because there is not a research study proving the efficacy of a particular course of treatment doesn’t mean it’s not worth pursuing if we think it may address an individual’s needs.
At the same time, we closely follow new science that builds on and goes beyond germ theory to take into account the whole person; body, mind and spirit.
Finally, all medicine should be built on trust and partnership. Integrative medicine places the patient at the center of care, and we build a course of treatment around your specific disease and symptoms. As we are seeing with Long COVID, this will mean continued medical detective work to deliver the best outcome. No patient should feel as if a physician is dismissing their concerns—or their symptoms.