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Michael Egan often feels like he has a bad, full-body sunburn. The sensation worsens throughout the day; by 6 p.m., it's so bad that the 55-year-old former artist usually just heads off to bed with sleeping pills. Egan also struggles against a constant, creeping befuddlement. Movies are confusing: "It's as if they're foreign," he says. Reading is difficult, too. And painting and drawing, which he once did professionally, are now out of the question. "That would be a completely frustrating and unrealistic goal," he says grimly. "I don't even think about it."
Egan suffers from an advanced case of Lyme disease, which can cause bizarre symptoms and even death if it progresses without treatment. Hard as it is, Egan's "half-life," as he calls it, is a huge improvement over the more tortured existence he led before he was diagnosed and treated. "Now I can clean myself, go to the post office, drive a car locally," he proudly reports.
In 1995 and 1996, Egan spent most of his time in a dark room wearing a blindfold and earplugs. Light, sound even vibration had become unbearable. His brain felt scrambled. He fell into inexplicable rages and frights that drove him to hide in his bathroom. He got lost in his own kitchen. And his eyes, ears, and skin hurt. Because of his pain and near-constant confusion, he couldn't walk. So, on the rare occasions he felt well enough to leave the room, he crawled.
During this period, Egan's partner, Chris Boslet, cared for him and ran the antiques business they co-own (the store recently hosted a book signing for Starr Ockenga, wife of Voice editor-in-chief Don Forst). It was only after two years of such severe disability and desperate visits to all sorts of doctors that the problem was identified as Lyme disease. (Earlier tests he had taken for the disease had been inaccurate. Like a considerable number of patients, Egan never developed or, perhaps, never noticed the "bull's-eye" rash that sometimes signals the disease.)
While relieving the angst of having his condition misunderstood, the diagnosis brought no easy answers. The severity of chronic Lyme disease is questioned by some in the medical community, and even Lyme experts are not always successful in treating the disease in its advanced stages. Egan began seeing one such specialist, Kenneth Liegner, who started him on high doses of several oral antibiotics. Yet, even after six months, when his gradually increasing intake of pills reached the peak of what his body could tolerate, Egan was still miserable. That's when Liegner suggested he have antibiotics injected intravenously. (This method gets higher levels of antibiotics to the bloodstream by bypassing the sensitive digestive tract.)
Egan was eager to try the treatment, even though it meant being hooked up to an IV for two hours a day. But his insurance company, Blue Shield of Northeastern New York, was not eager to pay for it. In July 1997, Liegner sent a letter to the company requesting authorization for reimbursement for Egan's IV regimen. Without the treatment, Liegner wrote, "Mr. Egan is likely to remain very compromised, may remain unable to earn a living, and runs the risk of pursuing a course of progressive deterioration."
Unmoved, Blue Shield, which declined to comment for this article, denied his request in November. The company sent a letter saying it didn't have evidence that Egan's Lyme disease was severe enough to warrant the treatment. Egan then filed an appeal of that decision, which was again denied, this time, according to the company, because "the requested prolonged IV therapy is not a generally accepted therapy."
Meanwhile, Egan began treatment, paying the more than $200 it cost each day from his own pocket. He took out a second mortgage on his house. But he soon spent all the cash from his mortgage and maxed out all his credit cards.
His financial bind and the urgings of his doctor, many of whose patients have faced similar insurance problems (several of them with the same company) ultimately moved Egan to seek legal help. He signed up with a law firm, Gruen and Farrelly, which at first recommended a nonconfrontational legal strategy. Egan's doctor simply sent the insurance company documentation of Egan's condition and the improvement he was making with the new treatment. "We were hoping to gently coax the company into paying," says Egan.
But that tack failed and soon the company was leading in a cynical legal dance. Sometime this spring, Blue Shield ceased paying for all of Egan's medical expenses, and his lawyers finally took steps to sue the company. Then Blue Shield resumed payment, and, hoping the matter was resolved, Egan's lawyers decided not to move forward with the suit. But once again Blue Shield stopped paying Egan's bills and the company revived its court action, arguing that the case should be dismissed on the grounds that Egan's side took too long with its court proceedings. (The New York supreme court judge who heard the case, James Canfield, rebuked the company for this behavior and, as a slap on the wrist, ordered it to pay $100 to Egan.)
Canfield's preliminary decision in the case, which was delivered in late November, also requires the company to pay for Egan's treatment until the trial and to reimburse him for medical costs that could total some $60,000. Egan's lawyers are delighted, calling the ruling "a complete and total victory."
But so far, Egan hasn't gotten a check. And the insurance company has begun its appeal, which will draw out Egan's legal battle even further. Egan's other battles are also likely to go on indefinitely. He says his legal and medical bills have put him about $125,000 in the hole, a figure he says "goes up all the time, like the national debt."
Egan suspects he will never again be completely well. Though he's made dramatic strides in the past two years, he is still far from the healthy, active artist he once was. But he's come to appreciate the small things he can do. "I can look at picture books and read captions," says Egan, who also reads fiction now, though slowly. A good day involves a stretch of six pain-free hours and a few such activities to fill it. "I just have to keep myself occupied," says Egan, "and keep from going mad."