The 50-year-old physician dropped into the leather chair in her psychiatrist’s Manhattan office. Her new normal, she announced to Dr. Deborah Cabaniss, was constant fatigue. Cabaniss noted that although her patient looked put together as usual, she could see the exhaustion in her eyes. “You don’t look like yourself,” the therapist agreed.
The patient had seen Cabaniss for more than a decade. She valued the sessions as a chance to talk about the stresses of balancing a medical practice with the demands of family, but since a few months earlier, all the patient could talk about was how awful she felt.
Her summer had gotten off to a great start. She spent Memorial Day weekend in 2019 with her children at her family’s beach house in the Hamptons on Long Island. Then she traveled with friends to Tanzania and Uganda. She saw all kinds of wildlife and even swam in Lake Tanganyika. But not long after she returned home, she started to feel sick. She had gone with her family to the beach house for the Fourth of July weekend. While she was there, she spiked a fever of 102. She spent most of the holiday in bed with chills and drenching sweats interrupted by occasional bouts of diarrhea.
A Prolonged Illness
After that weekend, she never felt well. Every two weeks, her fever came back for a couple of days. It didn’t make her sick enough to stay in bed, but she had to drag herself to meet her obligations to her patients and her family. Between these fevers, she was constantly exhausted. Every joint ached. The diarrhea persisted.
She went to see her primary-care doctor, who immediately sent off a series of blood tests to look for Lyme disease and a couple of other common tick-borne infections endemic to the region. The doctor also sent a blood smear to look for malaria. Although the patient had taken the recommended medicine to prevent infection in East Africa, some types of malaria are resistant. All the test results were negative.
The patient called one of her teachers from medical school, a specialist in infectious diseases, who recommended testing for other diseases she might have been exposed to in East Africa, including schistosomiasis — an infection transmitted by the snails in Lake Tanganyika — and other diseases carried by mosquitoes, like chikungunya fever. Again, all the tests were negative. By September the fevers abated, but she still had the full-body joint pain, the devastating fatigue and the occasional cramps and diarrhea.
The Fatigue Continues
She saw a gastroenterologist. When he couldn’t find anything, he prescribed a two-week course of an antibiotic called rifaximin for a suspected intestinal infection. Her diarrhea improved. But nothing else did.
Cabaniss had been reluctant to offer her patient any nonpsychiatric advice. But that day, seeing her so sick and still without a diagnosis, the therapist decided to speak up. A colleague of hers ran a center specializing in tick-borne diseases at Columbia University, she told her patient. If her illness wasn’t something she picked up in Africa, maybe it was something she brought home from the Hamptons.
The next day the patient made an appointment to see Dr. Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center. Fallon trained as a psychiatrist, but early in his career, in the 1990s, his interest in neuropsychiatric conditions led him to focus on a multisystem infectious disease caused by a bacterium known as Borrelia burgdorferi — Lyme disease.
Going Beyond the Usual
Fallon is a slender man with a tidy salt-and-pepper beard and a soft-spoken manner. The patient briskly outlined the events of the past few months, then described her current symptoms. She had no energy for anything and went to bed right after dinner most nights. She slept but never felt rested. And once she got out of bed, every joint in her body ached; it was the worst in her hands. Both hands? Fallon asked. Yes. And it was a different kind of pain from the many sports injuries she’d had. All she wanted was to feel herself again.
Fallon spent nearly an hour getting the rest of her medical history. But by the end of the visit, he wasn’t at all certain this was Lyme or any tick-borne infection. They can all cause fever and fatigue, but the joint pain in Lyme, the most common of these diseases, was usually limited to one side. Two other common tick-borne infections, ehrlichiosis and anaplasmosis, can produce similar syndromes of fever, fatigue and body pain but are usually far more severe. Babesia, a parasite transmitted by the tick that carries both ehrlichiosis and Lyme disease, was possible, but that infection destroys red blood cells, causing severe anemia along with fever and malaise. Fallon ordered the extensive panel of tests used in his center to look for other infections that ticks can cause.
An Insidious Bite
Because her symptoms weren’t typical, Fallon also ordered tests to investigate other possibilities. Rheumatoid arthritis (R.A.) often causes joint pain that can be worse in the hands. Celiac disease, an autoimmune disorder, can cause this combination of gastrointestinal distress and joint pain. He also checked her thyroid hormones, her red-blood-cell count and calcium level. The results came back over the next couple of weeks: She wasn’t anemic. Her calcium was normal. It wasn’t her thyroid. She didn’t have celiac disease or R.A. She didn’t have Lyme disease either. Nor did she have babesiosis or ehrlichiosis.
Only one result was positive — the test for a distant cousin of Borrelia burgdorferi, the bacterium that causes Lyme. It’s called Borrelia miyamotoi, and it causes one of the newest tick-borne diseases. The first cases, in Russia, were reported in 2011. Cases were reported in the U.S. two years later. B. miyamotoi, like Lyme, is carried by the black-legged deer tick, but it’s a much easier infection to get. With Lyme, the tick has to be attached to a body for two to three days before the bug can be transmitted. That’s because B. burgdorferi lives deep in the tick’s gut. But B. miyamotoi lives in the tick’s mouth and can invade the body almost immediately.
When untreated, B. miyamotoi can cause recurrent episodes of illness because of an unusual ability to fool the immune system by changing its outer layer. Once it has eluded our disease-fighting antibodies by the equivalent of changing clothes, it can reproduce again and produce a new round of fever, headache, fatigue and body pain that characterize this as well as most other tick-borne infections.
Fallon was a little surprised by the unusual result, but it made sense. The patient had been on Long Island where there are many ticks. And she reported this unusual relapsing fever. He called her with the news. She was ecstatic to finally have an answer. The recommended treatment is two weeks of an antibiotic called doxycycline.
Rare or Not Rare
Fallon had seen only a handful of cases of B. miyamotoi. And yet, based on research done by another scientist at the center, he knew that up to a quarter of the people who came for testing there had antibodies to B. miyamotoi, suggesting they had been infected with it previously. The only way he could explain this discrepancy was that sometime earlier, these patients had gone to their doctors with a febrile illness and a possible tick exposure and were treated for a presumed Lyme infection before the test results came back. Most tick-borne infections are treated with doxycycline. It was possible that the doctors and patients may have assumed the patients had Lyme disease, even after the test came back negative — when actually they had B. miyamotoi. Moreover, specific testing for B. miyamotoi is not available at most labs at this point. The disease is just too new.
The patient started feeling like herself again early this spring. Because of Covid-19, they’ve had to skip their usual trips to the beach house for both Memorial Day and Fourth of July weekends. Although the patient loves the tradition and the beach, she was happy to forgo it this year.