(See part one of "Neurological Lyme" here)
(See part two of "Neurological Lyme" here)
(Follow this link to read my personal story)
Robert Bransfield is a psychiatrist with a practice in Red Bank, New Jersey, along the sleepy Navesink River, just inland from the glitz and neon of the Jersey shore. Tall and professorial, with a charm and humility so natural it catches you by surprise, Bransfield seems an unlikely rebel, but experience with patients at the heart of the Lyme epidemic has left him little choice. The first Lyme disease patient he brought back from the brink worked as an assistant to a veterinarian, making her risk for exposure especially high.
Late in the summer of her twenty-second year, she developed the classic symptoms of Lyme disease and was treated with oral antibiotics. When they didn't make a dent in her condition, her doctor placed her on intravenous Rocephin and she appeared to get well. But almost two years later, she came down with a new set of symptoms, this time psychiatric.
Not only was she irritable and anxious, she also began to check things obsessively and eventually descended into a deep depression. Her psychiatric symptoms were so numerous, in fact, it was impossible to label her as having just a single disorder. She developed mania with rapid mood swings, from grandiosity to sudden tearfulness; paranoid delusions; auditory hallucinations; verbal aggressiveness; and violent impulses. She also suffered cognitive dysfunction, including trouble in spelling, writing, and verbal fluency. Despite hospitalization and treatment with "every psychotropic imaginable," says Bransfield, the patient declined, her depression becoming so severe that she tried to kill herself.
"This was very different from run-of-the-mill bipolar disorder," Bransfield said. "She kept getting worse, and she had physical symptoms, too. It forced the question: Could it be a reoccurrence of Lyme disease? She was so depressed I believed suicide was inevitable, so with no other option in sight, I began seeking a physician willing to treat her with antibiotics for Lyme disease. No one was willing to take the responsibility, so I wrote the order for intravenous Rocephin myself. It was a lifesaving decision. The patient responded to the treatment and today remains mentally and physically well."
Bransfield described the case in the medical journal Psychosomatics in 1995, and it didn't take long for other Lyme disease patients to beat a path to his door. As a result of the influx, Bransfield reports he's found a connection between Lyme disease and aggression in a small but significant group. He had one Lyme disease patient who'd become so paranoid that he assaulted five police officers in an episode of rage, and Bransfield admitted him to the hospital's psychiatric unit. During the hospital stay the patient made his way to the river behind the facility to watch fireworks on the Fourth of July and was so startled by the sound that he jumped into the river.
A fourteen-year-old boy in Bransfield's study repeatedly attempted to choke his mother to death, destroy his house, knock over furniture, and kick and punch holes through the walls and doors. A woman, age forty, became so enraged when a garbage truck cut her off on the road that she followed it back to the station, honking her horn and screaming all the way. In fact, she "was so crazed," she reported, that she felt like choking the driver to death. Bransfield says that in each and every case, the aggression resolved when these patients were treated for Lyme disease.
Hoping to spread the word, he's even testified in court when he believes defendants have been adversely influenced by Lyme disease to commit a crime. In 2001, he spoke out on behalf of a young man, age twenty-two, who attacked his neighbor with a medieval ax. It was partially treated, late-stage Lyme disease with brain involvement, including seizures that caused loss of memory and episodes of missing time, which led to the violence, Bransfield said. Despite his testimony, the young man was found guilty.
Bransfield has had more success testifying for a few women arrested for shoplifting. "These cases involved encephalopathy," Bransfield says. "The women were in such a fog they'd be holding something they hadn't paid for, without even realizing it, and would walk right out of the store. When the guards stopped them they were so confused they weren't able to explain what had gone on."
Bransfield has also been following another thread-the theory that Lyme disease and autism are somehow linked. The idea derives in part from observation: Women with Lyme disease seem to be having more than their share of autistic offspring, he reports, and when children with autism get Lyme disease, their autism gets worse. Bransfield says that ten of the fifteen top Lyme states-including Connecticut, Rhode Island, New Jersey, and Pennsylvania-are also most endemic for autism. And he and his colleagues say they've found compelling evidence in studies of blood. In one study he references, 22 percent of autistic subjects tested positive for Lyme disease. In another, it was 20 to 30 percent.
Other infections, especially mycoplasma, he adds, may be involved. As the theory gains traction, families with autistic children have formed organizations and held conferences, testing their children for Lyme disease and seeing if treatment can help. Is Lyme disease causing the autism? "Not exactly," Bransfield believes. Instead, the children are already immunologically vulnerable, and a multitude of triggers, be it Lyme borreliosis or a chemical sensitivity, might set them off. To see if the theory holds, Brian Fallon has launched an epidemiological study comparing the rate of autism in two heavily Lyme-endemic areas in New Jersey and Connecticut to areas where Lyme is rare.
Psychiatrists like Bransfield remain light-years apart from those clasically trained in infectious disease and some other medical specialties, who, by and large, do not see subjective cognitive or psychiatric symptoms as signs of Lyme. But the issue is one of perspective. Those first describing Lyme disease in the early literature were trained in rheumatology and dermatology. The ‘objective signs' they recognized -palpably swollen joints, antibody production, and an erythema migrans rash-derived from the specialty-specific training they had. Later, neurologists added their specialized ‘signs' to the mix: cranial nerve palsy, gross meningitis, and measurably damaged nerves.
By these standards, virtually one hundred percent of those treated for Lyme disease are cured, but that ignores the fact that a huge number of patients still have cognitive problems, fatigue, pain, and mood swings. Because those symptoms weren't objectified early in the history of the disease, by the specific specialties first involved, they were never added into the calculus for dignosing the diease. But psychiatrists --more of them each day-- feel that signs and symptoms of psychiatric disease are highly relevant, even if rheumatologists and neurologists lack of appreciation for these other ways of defining illness and objectifying signs and symptoms of disease.
You don't need to be a scientist or doctor to observe the obvious: If one doctor offers no relief, patients will seek help from someone with a different perspective or point of view. Because patients stay with doctors based on treatment outcome-and because outcome varies so widely depending upon whom you talk to-it is impossible to say that doctors across the specialties are seeing the same kind of patient.
Even if the precipitating infections were once identical, is it now the same disease?
Read more about neurological Lyme disease here
Pamela Weintraub is the author of Cure Unknown: Inside the Lyme Epidemic and senior editor at Discover Magazine.