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Learning about Lyme disease the hard way
Thursday January 28, 2010
MercuryNews.com - A month ago, Bart Fenolio was told he had Lou Gehrig's disease and had two months to live. Doctors advised his wife, Heidi, to take him home and call a hospice.
But Fenolio is proving the doctors wrong. Instead of getting worse, he's growing stronger each day, thanks to antibiotics. That's because he doesn't have Lou Gehrig's disease, which isn't curable. He has Lyme disease, which is.
Lyme disease, a bacterial illness spread by ticks, is a poorly understood and strangely controversial illness that has been sweeping the country since it was discovered in Connecticut in the 1970s. While still rare in California, there were 28,921 confirmed cases and 6,277 probable cases in the United States in 2008, nearly twice as many as in 1994.
But Lyme experts suspect there could be 10 times that many. That's because when not treated immediately, Lyme can hide in the body for years and then attack, masquerading as anything from heart disease to arthritis to lupus. Folks might not even know they'd been bitten. And the tests for Lyme disease are notoriously unreliable.
Dr. Raphael Stricker, a Lyme disease expert in San Francisco, regularly sees patients who have been misdiagnosed with chronic fatigue syndrome or Parkinson's disease.
"I saw a new patient the other day who had weird symptoms and had gone to the Mayo Clinic for a complete work-up," Stricker told me. "All they could come up with was fibromyalgia," a syndrome characterized by chronic pain, fatigue and depression. Stricker learned that the woman had grown up on Cape Cod, where Lyme-carrying ticks are common.
"How could you miss that little tidbit of her history?" he wondered.
Bitten in Morgan Hill
Fenolio, 69, knows just how he contracted the disease. Six years ago a healthy and hearty Fenolio was playing with his dog Cody near a percolation pond in Morgan Hill and was bitten by a tick. When a circular rash appeared around the bite, he went to the doctor. A Lyme test came back negative, and he forgot all about it.
Three years later he retired from the tropical fish store —Dolphin Pet Village — he and his sister owned in Campbell. He and his wife moved to San Diego to be near their grandchildren and to enjoy playing lots of golf.
But his golf game slowly deteriorated. He couldn't seem to grip the club. Then, during a vacation in Hawaii, he was too weak to climb out of the pool. His doctor told him he was just getting old. His wife wasn't buying it.
"I said, 'This is not old age. My husband is disintegrating before my eyes, and something's going on.' "
Their Kaiser Permanente internist referred them to a neurologist, who diagnosed Lou Gehrig's disease. Then Fenolio's son remembered the tick bite.
Fighting for treatment
A laboratory that specializes in Lyme tests confirmed his suspicion, and a Lyme specialist in Redwood City prescribed a long-term course of antibiotics. But the ordeal wasn't over. Although Fenolio began to improve on antibiotics, his wife told me, Kaiser doctors wanted to discontinue them.
That's because the Infectious Disease Society of America still recommends against extended treatment using antibiotics, and it casts doubt on whether chronic Lyme disease exists at all, despite thousands of documented cases. Because of the IDSA's position, health insurers generally refuse to cover long-term antibiotics. In most states, though not in California, doctors can lose their licenses just for treating chronic Lyme.
Dr. Sara Cody of the Santa Clara County Health Department cautioned that Lyme disease is rare here, and Fenolio's case doesn't prove that there's rampant misdiagnosis going on.
"What he is experiencing is tragic but not common," she said.
Dr. Jonathan Blum, an infectious disease specialist at Kaiser Permanente Santa Clara, wouldn't discuss Fenolio's case. He confirmed that Kaiser follows the IDSA protocols.
"Long-term antibiotics can cause significant side effects," he said, "and should be used only if they are going to help the patient."
Fenolio's family is convinced that the antibiotics are helping. Today he is in a San Jose nursing home, improving each day. He knows there will be setbacks, but his wife hopes he'll be strong enough to go home in a couple of months.
"I just wouldn't want anyone else to go through this nightmare," she said. "If I had one of those diseases and was told there was no cure, I would definitely want to be tested for Lyme."
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