Wednesday morning, May 18th, and Thursday evening, May 19th, the Lyme Disease Association (LDA) sponsored two events to heighten public awareness of the disease and help raise funds for a Lyme Disease Research Center at the Columbia University Medical Center in New York.
Both events featured Literati with Lyme, an ad hoc group of best-selling authors who've had Lyme disease for years. On Wednesday, this group included Amy Tan (The Joy Luck Club and movie), Meg Cabot (The Princess Diaries and movies), and Jordan Fisher Smith (Nature Noir: A Park Ranger's Patrol in the Sierra). On Thursday, E. Jean Carroll (advice columnist for Elle Magazine and author), and Jennifer Weis (executive editor, St. Martin's Press,) joined the literati panel.
Pat Smith, president of LDA, presided over both events. On the 18th, she noted in her introductory remarks that the Centers for Disease Control & Prevention (CDC) accepted 24,000 reports of Lyme infections in 2002. This represented a 40% spike in Lyme cases nationwide in one year. According to the CDC itself, she continued, nine out of ten cases are not reported to this agency, so it's quite possible that 240,000 Americans came down with Lyme in 2002.
I'll add to Ms. Smith's statistics that the Introduction to the LDA's Lyme Disease Update: Science, Policy & Law (July, 2004) concludes with a startling fact: Lyme disease has become the most prevalent vector-borne disease in the US. "Of the total number of vector-borne diseases now reported to the CDC, 95% are new Lyme cases."
The media were invited to the breakfast event at the Columbia University Club, a posh facility in midtown Manhattan. The featured medical speaker was Brian Fallon, MD, MPH. Dr. Fallon holds two positions at the Columbia University Medical Center; associate professor of clinical psychiatry, and director of the neuropsychiatric and tick borne disease evaluation service. Dr. Fallon also holds two positions at the New York State Psychiatric Institute; director of the Lyme disease research program, and director of the somatic disorders research program. He has received over $8 million in National Institutes of Health (NIH) and private grants, and has served on grant review committees for the National Institute of Allergy and Infectious Diseases and for the National Institute of Mental Health.
Dr. Fallon made a power point presentation on an NIH-funded $4.7 million study of chronic Lyme encephalopathy, which he and his Columbia colleagues have recently completed. Fallon knows the results. (He didn't reveal them because the article is not yet in press.) He believes the findings in the study will modify or revise treatment guidelines for Lyme, especially chronic Lyme disease. He showed slides of SPECT scans of the brains of patients with active Lyme, which gave objective evidence of improvement after treatment with Intravenous (IV) antibiotics. He touched on similarities in magnetic resonance imagings (MRIs) between patients with Lyme and Multiple Sclerosis (MS). He likened the pain felt by some chronic Lyme sufferers in his study to the pain of people coming out of surgery, the fatigue in Lyme to that observed in patients with the severe neurological disease MS, and the physical disability in Lyme patients to the disability people experience in congestive heart failure.
Reporters for The New York Times and People Magazine attended the breakfast program Wednesday, so Thursday morning I bought the Times and skimmed the first section, where science articles are sometimes carried in the national news. Nothing there. I next skimmed the Metro section, where establishment of a research center at a major New York medical facility might rate news coverage. Again nothing.
In the Arts section, under the column "Arts, Briefly," at the bottom, I spotted a squib headed "Writers and Lyme Disease" with a headshot of Amy Tan. Literati with Lyme and the members of the group were named. The coverage included the event on the evening of the 19th as well. Not a word about the Columbia University Center on Chronic Lyme.
On Thursday evening, the panel discussion, titled, "Writer's Block of the Worst Kind: An Open Book on Lyme," was open to the public, with questions invited from the audience after the panelists' presentations. A ticket cost $20, with the proceeds going to the LDA to support its public education and research efforts on causes and cures of Lyme disease, including the proposed Lyme disease research center at the Columbia University Medical Center.
Joseph Burrascano, MD, joined Thursday's panel. A New York internist who has treated thousands of Lyme patients from around the world, Dr. Burrascano has authored numerous papers and textbook chapters on this infection. His Managing Lyme Disease (now in its 14th edition), has been distributed internationally. He's addressed many government bodies on Lyme, particularly in Washington, DC. He's a founding board member of the International Lyme & Associated Diseases Society (ILADS), a professional medical society. (Last year, ILADS published guidelines for the management of Lyme disease in the peer-review literature. The ILADS guidelines address all patients with Lyme, including those with persistent, recurrent, or refractory disease.) In effect, Dr. Burrascano served as the clinical counterpart to Dr. Fallon on Thursday's program.
There's no room here to detail the personal ordeal with chronic Lyme described by each of the members of the literary panels. There were similarities, but how each panelist expressed themselves differed as widely as their personalities and writing styles differ. I taped both programs and the experiences the literati with Lyme recalled may fit in a column I plan to write on how serious Lyme disease affects individual patients.
Perhaps the editor(s) at The New York Times didn't regard the chronic Lyme Center at the Columbia University Medical Center as newsworthy because, technically speaking, the center will remain in a proposal stage until a $3 million endowment is raised. But during Thursday evening's program, Pat Smith announced that the LDA and a CT group, Time For Lyme, had already raised $2.2 million, and that another $200,000 had just been pledged by a donor who wished to remain anonymous.
If People Magazine published a news story on Literati with Lyme, which didn't include mention of the proposed Lyme Center at Columbia University, my column here may well be the only report about the center to reach a sizeable number of Americans. Let me, then, summarize the rationale for the Columbia center and the research areas it will cover.
While a good deal is known about early Lyme disease, not much is known with certainty about chronic Lyme infection, despite its rising prevalence. The disabling effects of persistent or recurrent Lyme may include arthritis, cognitive loss, intensely debilitating fatigue, and peripheral neuropathies. In rare instances, Lyme disease may cause blindness, MS-like illnesses, and severe psychiatric disorders. Children with persistent Lyme may be forced to stay home for months or years, missing out on academic and social influences critical to healthy childhood development.
The clinical and research mission of the new chronic Lyme center will encompass studies of new diagnostic tests, clinical phenomenology, studies on co-infections of Lyme, immunopathogenesis, genetic markers of vulnerability to Lyme infection, structural and functional brain imaging, and well-controlled studies of new treatments. As the first medical facility in the world devoted to chronic Lyme, the Columbia Center will serve, too, as a national resource on the disease, giving pilot grants to researchers around the US and focusing state-of-the-art scientific technology on resolving the problems of persistent Lyme infection.
Summing up Thursday, Dr. Fallon said that physicians across the country were calling his office for guidance on treating Lyme. They were calling not just from small centers, but from major academic medical centers. These were doctors who were listening to their patients and seeing that if they re-treat patients, some get better. And even if it goes against the conventional wisdom of those major academic medical centers, they're willing now to stand up and say, "Yes! What you're doing at Columbia is really exciting."
Interviewing Dr. Fallon at the intermission on Thursday, I picked up on a tip for avoiding Lyme disease dropped by E. Jean Carroll. Eat raw garlic, she had advised; it was ancient folk wisdom that garlic contains healing power. I informed Dr. Fallon that the National Cancer Institute (NCI) had a phytochemical section in its cancer chemoprevention division back in 1990, and the chief of the section had thoroughly analyzed all the compounds in garlic that offered health benefits. He was far from the first in the medical world to have done so, but his work at the NCI confirmed that one garlic compound and its derivatives, allicin, was an extremely potent wide-spectrum anti-bacterial. I asked Dr. Fallon if the new Columbia center might one day consider combining a garlic derivative with IV antibiotics to see if the combination might possibly shorten the duration of IV antibiotic therapy while increasing the efficacy of the therapy. That, he answered, would make an interesting integrative medicine study.
Some providers and users of CAM might push farther: Why not conduct a study with a control arm giving the herb cat's claw, claimed to be effective against Lyme? Or identify nutritional compounds beside allicin that might be effective without causing the harmful side effects seen in the cumulative administration of IV antibiotics?
Pragmatically, that's not on the near horizon. Mainstream medicine views short-term antibiotics as the treatment for Lyme, and mainstream MDs who treat persistent Lyme disease with long-term IV antibiotics are a distinct minority. Like CAM doctors, they've already been targeted by insurers willing to reimburse only for therapy accepted by the majority of mainstream physicians. Like CAM doctors, state medical boards have investigated or prosecuted them for professional misconduct. Hopefully, the Columbia Lyme center will produce a positive integrative study; one that might "beget" additional academic studies elsewhere of herbal or nutritional therapies as a cheaper, safer alternative to antibiotic drugs.
by Marcus A. Cohen
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