Lyme disease wars

Warm weather is finally here and so begins the season for summer barbeques, long days on the beach, warm evening strolls — and Lyme disease. When it comes to the seasonal tick-borne disease first identified in Lyme, Connecticut, in the mid-1970s, Massachusetts remains one of the most heavily impacted states. An estimated 15,000 to 30,000 people will develop Lyme disease in Massachusetts this year.

The disease can cause a raft of symptoms, including flu-like feelings and fatigue and, if untreated, everything from arthritis symptoms to cardiac problems. But the battle to identify and treat Lyme has turned into an all-out war among those who deal with the disease, pitting many of the leading nation’s Lyme researchers against a renegade group of vocal patients — joined by some doctors — who claim the disease is more prevalent than official numbers suggest and that conventional treatment is far too limited. The Globe’s Beth Daley gave a thorough overview of the Lyme disease wars yesterday, the first in an occasional series the paper has planned on the illness.

Most physicians treating the disease — including Mass. General Hospital’s Allen Steere, the country’s foremost Lyme researcher and the man who first identified its cause nearly 40 years ago — believe it can be diagnosed with a blood test and that a one-month course of antibiotics almost always rids the body of the Lyme infection. Steere and others say that Lyme has become a catchall diagnosis for what Daley describes as “vague and wide-ranging health complaints” — some of which are better dealt with by psychiatrists than rheumatologists.

Doctors on the other side have gone so far as to found a rebel organization, the International Lyme and Associated Diseases Society, to combat the prevailing views put forward by Steere and the long-established Infectious Disease Society of America.  The breakaway group says patients often need chronic antibiotic treatment — for a year or longer. As CommonWealth reported earlier this year, those fighting against the standard treatment regimen for Lyme have taken the battle to the state Legislature, where they pushed for creation of a Lyme disease commission.  A bill is now pending that would mandate insurance coverage of long-term antibiotic treatment for Lyme.  

While lawmakers have the power to direct insurers to cover extended Lyme treatment, that’s not the same as answering the question of whether there is actually a medical rationale for longer-term treatment. Some Lyme organizations are taking up this challenge. Daley writes that the Connecticut-based Lyme Research Alliance, for example, has raised $6 million over the last decade and is the primary funder of a new research center on Lyme and other tick-borne diseases at Columbia University Medical Center.

“It’s a very confusing illness for physicians and patients,’’ Dr. Laurel Miller, infectious disease medical director of Cape Cod Healthcare, which runs Cape Cod and Falmouth hospitals, told the Globe.

                                                                                                                                                        –MICHAEL JONAS


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