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Sunday, May 08, 2005

One Man's Multitude Of Misery With Lyme Disease

By STEVEN SLOSBERG
Published on 4/21/2005

In this, the 30th year since Lyme disease got its name, Van Brown of Mystic is grateful that he knows, at last, what he has. Or presumes he knows.

The physical and neurological miseries, and the prolonged expedition through medical mazes, and the terror, all that he has down. There was the physician, no longer in practice, who told him he might have pancreatic cancer. The Mayo Clinic, he said, recently concluded that he indeed had degeneration of the brain, but then sent him on his way without any solution.

"Lyme is a very, very ugly disease," said Brown this week from Texas, where, at the Academy of Oriental Medicine at Austin, he is undergoing a regimen of acupuncture, Rolfing and other alternative treatments to relieve some of his discomfort. He said he tries to get to Austin at least once every couple of months.

Brown, who is 52 and a financial strategist, is perhaps best known in the community for his philanthropy, particularly toward the Eastern Connecticut Symphony Orchestra. His wife, Beth Tillman, has been president of the ECSO, and Brown was head of the symphony's Friends group. He's also taught aquaculture at Ledyard High School.

Since the early 1980s, or about a decade after Lyme was identified as the cause of an epidemic of arthritis occurring in and around Lyme and Old Lyme, Brown said he's been trying to find someone to help him. He has experienced loss of taste and loss of smell, loss of memory and vertigo, and chronic knee problems, which he'd always attributed to football during his Texas school days.

He was convinced he had the symptoms of Lyme, but various tests he underwent through the years showed no evidence of it, or so he was told.

In the fall of 2004, seeking a way to reverse some of the brain damage he'd incurred, he visited the Advanced Magnetic Research Institute of North Carolina, in Mocksville, N.C. There, Dr. Larry A. Pearce, a neurologist, suspected Lyme might be at the root of Brown's troubles. Pearce, said Brown, indicated that antibiotics, at such an advanced stage of Lyme, would have little effect and suggested trying to bolster Brown's immune system.

Tillman, an attorney, has heard all the skepticism about quacks and myths and phantom cures for Lyme. But she said she's made a dedicated study of the disease, which, is now considered the most common vector-borne disease in the United States, according to the American College of Physicians. The bite of a tick infected with the bacterium Borrelia burgdorferi is the means of transmission.

"Seven of the standard tests, the Centers for Disease Control standard-type tests, on Van all came back negative," she said. "But those tests are only good for about 30 days after the infection and on out to about 120 days. There is no doubt in my mind that he has been afflicted with something we presume to be Lyme disease, now that he's been fully diagnosed."

A local Lyme expert agreed that antibiotics won't always do much for neurological Lyme disease, the rarest form of the disease. "Those patients are difficult to treat with anything," he said.

Besides his visits to Austin, Brown is regularly seen by a chiropractor in Warwick, R.I., has undergone electro-magnetic treatments, practices Qi Gong, a Chinese meditation, and ingests, in his words, a battery of herbs and supplements, including Samento, a derivative of Cat's Claw, a South American vine that helps relieve arthritis pain.

The level of his infection with Lyme has dropped substantially in the last year, said Brown, but he is hardly free of it. He worries about all the others like him who don't receive the right help.

"The insidious part of the disease," he said, "is that you're told all the time you're imagining it. You can't keep your balance, your memory is affected, and everyone tells you it's all in your mind."

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