Lyme Disease Is Spreading at an Alarming Rate—and This Is Why

MAY 16, 2018

Photographed by Arthur Elgort, Vogue, November 2001

Nine years ago, when Deanna Needell was in grad school at UC Davis, she was beset by stomach pain after a bull’s-eye rash swelled around a bug bite—a telltale sign of Lyme disease. “Because I live in California, where Lyme is less common, none of the doctors I saw early on even mentioned it,” she says. The lapse was costly: Needell developed migraines so impervious to medication that she often wound up in the ER; years later, when she started having muscle spasms, her doctor was concerned she might have ALS. (Left untreated, Lyme bacteria can spread to the muscles, nerves, brain, and heart, triggering debilitating complications.) A friend finally floated the possibility of Lyme, and Needell got tested. After a diagnosis and intermittent courses of antibiotics, most of her symptoms have abated.

Now a mathematician at UCLA with a Ph.D., Needell, 37, is seeking answers in big data. Since receiving a National Science Foundation grant in 2017, she and her colleagues have come up with new ways to comb through’s registry, which houses more than two million data points from 9,000 patient surveys. The ambitious effort aims to uncover patterns of symptoms that could inform testing procedures and lead to more effective, personalized treatments for a disease that presents differently from patient to patient. Already Needell has noticed more women than men in the survey. “Maybe that has to do with gender bias in medicine, or maybe women’s immune systems respond differently to the bacteria. That’s one of many complex issues we’d like to illuminate.”

Transmitted by the black-legged tick (also known as the deer tick), native to a swath of the U.S. that spans the Northeast into the Midwest, Lyme is caused by a spiral-shaped bacterium, Borrelia burgdorferi—a wily foe that, instead of circulating in the blood, hides in body tissue, where it’s far harder to detect. Traditional blood tests won’t find the bacteria, so labs look for the next best thing: antibodies that show you’ve been exposed. But the approach is hit or miss. According to Brian Fallon, M.D., director of the Lyme and Tick-borne Diseases Research Center at Columbia University, the current two-step diagnostic process is only 35 to 50 percent accurate early on, when treatment is most successful.

That ambiguity only compounds the suffering, as Porochista Khakpour writes in Sick, a new memoir charting her labyrinthine ordeal with Lyme. “To pinpoint this disease, to define it, in and of itself is something of a labor already,” she says in a fact-filled author’s note, which includes the startling statistic that the “number of outbreaks each year has more than tripled since 1980″—a rate that stands to grow as black-legged ticks continue their alarming territorial expansion. “They’re in at least 30 countries and nearly half of all counties in the U.S.—twice as many as 20 years ago—and there’s compelling evidence that their spread is due, in part, to a warming climate that’s more accommodating to ticks,” says Mary Beth Pfeiffer, author of Lyme: The First Epidemic of Climate Change.

As the illness reaches pandemic proportions—with hundreds of thousands of cases in the U.S. annually—innovative efforts are under way to confront and contain it. Fallon’s colleagues at Columbia are homing in on a more sophisticated antibody test to identify eight common tick-borne pathogens; potentially transmitted in a single bite, these other strains can cause additional diseases (like Rocky Mountain spotted fever or Heartland virus, for example) that often confound doctors and complicate treatment of Lyme. Meanwhile, researchers at the Cary Institute of Ecosystem Studies in Dutchess County, New York, are trying to stop the spread of Lyme at its source. The Tick Project—their five-year trial involving nearly 1,000 high-risk households—is testing two interventions: a fungal yard spray as well as a tiny bait box that brushes curious rodents with a tick-killing product. Though deer are often associated with the spread of Lyme, “most ticks pick up the bacteria after feeding on white-footed mice,” explains disease ecologist Richard Ostfeld, Ph.D.

MIT scientists have an even more radical proposal: They want to edit the DNA of white-footed mice so they and their offspring are immune to the bacteria—or, better yet, repellent to the bugs themselves. “Either way, it means far fewer infected ticks,” says Kevin Esvelt, Ph.D., an evolutionary engineer, who conceived the initiative. He has approached the island community on Nantucket, where 40 percent of households have been affected by Lyme, about potentially releasing thousands of genetically modified mice there. Implementation would be years into the future—much like the Lyme vaccine, recently granted a fast-track designation by the Food and Drug Administration—but Esvelt is thinking big. “If it’s effective, we might be able to create a modified version that would work for the mainland as well.”



Quit saying Lyme is less common in California.  It’s not:

Regarding gender and Lyme/MSIDS:

Regarding what ticks carry what – seriously unbiased research needs to be done.  If you ask those doing this work about this issue they refer you to ancient studies done 30 years ago.  From what I read, Bb is incredibly tough to study in the lab.  We need new techniques and open minds.  We also need straight answers on other modes of possible transmission (sexual, congenital, via breast milk, other insects and ticks).  Little work has been done in this area and the work that has been done has largely been ignored.

Again, this spreading plague has ZIPPO to do with the climate.  Ticks are marvelous ecoadaptors and will be the last living thing on planet earth.  Focus on the REAL issues, please!

The coinfection issue is paramount & requires serious research and consideration – which isn’t being done.  Mainstream medicine still considers this a Mono illness.  (The actual number is 16 and counting)

There’s a whole lot more involved than the white-footed mouse.  And GMO mice open up a Pandora’s Box of possible unimaginable consequences: as well as other another bio-control currently being used:

What I want to know is why nobody’s talking about controlled burns which are 98% effective!