Bart Fenolio still tires easily, needs a walker to get around and has occasional memory lapses. He knows it could take years for him to overcome the devastating effects of chronic Lyme disease.
But for a 70-year-old guy who had been told he was dying of Lou Gehrig's disease and couldn't breathe on his own or pick up a cell phone when I saw him six months ago, Fenolio looks pretty darn good. And he is counting his blessings.
"I'm just so lucky to have a family and so many friends who could advocate for me," he told me Thursday as he prepared to leave the San Jose nursing home where he has been recovering since December. "I've lost a lot of muscle mass — I've got no buns — but I'm finally on the road to recovery."
In January, I told the story of the former San Jose State track star, classic-car nut and golfer who contracted Lyme disease from a tick bite but was misdiagnosed with amyotrophic lateral sclerosis, an incurable illness. The longtime owner of a Campbell tropical fish store was bitten by the tick while walking his dog in Morgan Hill seven years ago and began to develop symptoms two years ago.
Only through the persistence of Heidi, his wife of 46 years, and their scientist son and social-worker daughter was Bart given a series of Lyme tests that came back positive. He says his doctors at Kaiser Permanente insisted he had ALS even though he began to improve with antibiotics, and he left Kaiser to get the treatment he needed.
Fast-growing disease Lyme disease, a bacterial illness spread by ticks, is the fastest-growing infectious disease in the country, with 28,921 confirmed cases and 6,277 probable cases reported in 2008.
First identified in Connecticut in the 1970s, it still is not understood. Tests for Lyme are notoriously unreliable,and it can masquerade as Parkinson's disease or arthritis.
After I wrote about Fenolio's case, I was inundated with inquiries from people with similar stories and those who suspected they might have the disease. I have been referring them to the California Lyme Disease Association at http://www.lymedisease.org/ .
Since then the Fenolios, who retired to San Diego four years ago but came back to the Bay Area to find a Lyme specialist, have been living here, Bart in a nursing home and Heidi with friends in Saratoga. They have become strong advocates for Lyme education.
"We have met so many people who were misdiagnosed," Heidi said.
"There's so much of it out there," Bart added, "but people don't realize it."
Legislation that would provide more money for research and testing for Lyme is inching its way through Congress. But advocates for patients with chronic Lyme suffered a blow in April when a federal review panel refused to endorse the use of long-term antibiotics, saying that treatment posed too great a risk of side effects.
The panel's decision infuriated Bart and Heidi because they are convinced that the antibiotics he has been taking since October saved his life.
"Why withhold treatment when you've already got a death sentence?" Heidi asked. She is confident that some day Lyme will get the attention it deserves. But for now, patients have to fight for treatment.
"I always say we're just five years too early," she said.
The disease has taken its toll on the family financially as well as physically. Medicare has picked up much of the cost of Bart's treatment, but the Fenolios have spent about $100,000 of their savings.
"It's been a real journey," Heidi said, shaking her head. "I don't even know how to describe it. This week especially has been just horrible for him because he can't wait to get home."
At last, Bart's wait is over. This morning, he and Heidi are scheduled to fly to San Diego, where their daughter will meet them in Bart's 1939 Ford woodie wagon. A procession of woodies driven by members of the San Diego Woodie club will escort them home. Then Bart will be able to sit in his backyard by his koi pond, feel the ocean breezes, enjoy Heidi's veal scallopini and sleep in his own bed for the first time in a year.
"It will be so good to get him home," Heidi said. "Just to be able to hold his hand during the night, I can't even tell you."