Then I realized: Many of the sickest Lyme patients were cognitively impaired. Despite my research, despite my own Lyme disease, I still hadn't gotten it. To this day, popular perception holds that Lyme disease is an affliction of the knees, characterized by swollen joints and an inability to serve in tennis or descend a flight of stairs. Musculoskeletal symptoms can be a hallmark of Lyme, but the early rheumatologists who first defined the disease had recognized just one part of the elephant—it would take more time, and a broad array of specialists, for the widening picture to emerge.
One of the first to realize the psychiatric implications of Lyme was Andrew Pachner, a Yale neurologist who moonlighted at psychiatric hospitals. On one such gig, he was asked to evaluate a 12-year-old boy who, prior to admission, had pedaled his stationary bicycle constantly, barely stopping to sleep or eat. Before the start of this behavior, the boy had been an excellent, hard-working student with a talent for soccer. But his soccer days were disrupted when he developed swollen knees and was diagnosed with Lyme arthritis. The child was treated and seemed to get well. When his obsessive pedaling began years later, his prior Lyme was already a distant memory, and no one saw the relationship between the two.
Except for Pachner. Given what he knew about syphilis—another spirochetal infection that gravitates to the brain and causes neuropsychiatric disease—he wondered whether Lyme disease and the obsessive cycling might be linked. In a leap of insight, he moved the boy to Yale and began infusing him with 20 million units of penicillin for 14 days. It was like a miracle. Within days the child started to improve, interacting with staff and eating food. Two weeks later he returned home and went back to school.
In 1989, writing in the Archives of Neurology, Pachner, by then at Georgetown University School of Medicine, described six cases of central nervous system Lyme disease, of which his bicycle boy was just one. Another patient, a 21-year-old man, had violent outbursts and wild laughing, attributed to herpes virus thought to infect his brain. But he tested positive for Lyme disease and, treated with antibiotics, was finally cured. A 6-year-old girl, so afflicted with vertigo she staggered, tested positive for Lyme and was treated; she, too, got well.
Neuroborreliosis, Lyme disease infecting the central nervous system and brain, appeared almost protean and could be mistaken for a host of other ills. Lyme disease was "the new great imitator," Pachner declared. Reports of bizarre complications now flowed into the medical journals. A group from Stanford described a 25-year-old woman with hallucinations, hypersexuality, nightmares, and a rash. Scientists from Germany found Lyme could cause Tourette's. Researchers even found a link between Lyme and the motor neuron disease amyotrophic lateral sclerosis (ALS).
If one were to describe all the macabre presentations of neuroborreliosis, it would fill a book. But the far more common problem—the confused state known as encephalopathy, or brain fog—was bad enough. Brain fog includes a disorienting lapse of memory, an inability to concentrate, difficulty falling asleep, and profound fatigue.
Though my family and I were more coherent than the sickest patients, we suffered, too. There were so many ordinary things that confounded us, hounded us, in the course of everyday life. Take our taxes, for instance. Every year since 1978 we had done our taxes together, filing receipts in neat manila folders, calculating the deductions, and sending it to our accountant, Irwin. But now we were stymied. Sitting together with hundreds of receipts we had stashed in trash bags, with credit card bills and cancelled checks, we found it impossible to do the sorting. We ignored Irwin's calls and didn't do taxes for years until my brother, a tax attorney, swooped down, demanded our mess, and took care of it for us.
Mark almost burned down our house by tossing ashes from the fireplace atop bags of dried-out leaves he had moved into the garage. The pre-Lyme Mark knew to store dried leaves outside and that hot cinders added to piles of dried leaves meant inferno and possible death; but Mark-on-Lyme did not stop to consider the consequences. Our garage was ablaze while we blithely watched a TV show upstairs. Passers-by called the police. Our family room exuded the stench of burnt wood and plaster for years.
Brain fog was new for us, formerly the family of fast thinkers. Now we were the family of stumblers and bumblers, making conversation and parsing the details of life under the psychic din of an ocean roar. I started to think of us as Dumb and Dumber.
Lyme encephalopathy was hardly undocumented. In one study, the neurologist John Halperin, now at North Shore University Hospital in Manhasset, New York, found white matter lesions, much like those seen in multiple sclerosis, in the brains of 7 out of 17 encephalopathic Lyme disease patients. The lesions represented brain damage. Sure, Lyme patients were not usually as impaired as those with bullets in their brains, but the brain fog, the deficits in language and organization, the psychiatric leftovers of anxiety, depression, and OCD, could still disrupt lives. Adults lost houses, marriages, and jobs and were compromised as parents. Children lost their childhoods when cognitive or emotional disabilities forced them to homeschool. The impact was major, but neurologists often characterized such symptoms as minor, nonspecific, and vague.
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