Hide and seek

Record Eagle - Traverse City MI
Janice Ensfield and Michael Survilla started their crusade to educate people about Lyme disease in an unlikely place.

The friends met in a local chronic fatigue syndrome support group after struggling for years to pinpoint the cause of their life-altering symptoms. Both of them have since been diagnosed with Lyme disease, whose wide-ranging signals often masquerade as other conditions like chronic fatigue.

"At some point in time we've probably been diagnosed with just about everything," said Survilla, who estimates he saw at least 25 medical specialists before testing positive for Lyme.

Infected deer ticks transmit Lyme disease, which can affect every organ and aspect of everyday life. Early stage signs include flu-like illness, extreme fatigue and joint aches, and later stages can spur neurological problems. Common misdiagnoses include fibromyalgia, multiple sclerosis and a host of psychiatric disorders.

Ensfield and Survilla hope telling their stories will help other people who are unknowingly living with Lyme.

Ensfield first became seriously ill in 1990, but looking back she believes she contracted Lyme disease in 1987 when a deer tick bit her in her yard. A second tick bite in 2001, also at her home in Traverse City, transmitted a co-infection.

Even when her debilitating symptoms brought her "near death" in November 2001, Ensfield had still not heard of Lyme disease. Her turning point came in 2002 when her husband was at the doctor's office and encountered a Lyme patient, who recounted similar symptoms.

"I got tested the very next day," Ensfield said.
Survilla doesn't know where and when the infected tick bit him, but he knew something was wrong the day in 1989 when sudden exhaustion and shakes forced him to pause his round of golf.

"From then on it was never the same," he remembered.
Survilla, who lived in Kalamazoo when his illness emerged, was just recently diagnosed with Lyme but like Ensfield had gone years without hearing about the disease. Both take antibiotics - the typical treatment - and see a Saginaw doctor who specializes in Lyme.

Linda Lobes, president of the Michigan Lyme Disease Association, said diligent awareness is the best defense. That means knowing how to detect and properly remove ticks no larger than the period at the end of this sentence and looking out for symptoms, which include but are not limited to the distinctive "bull's-eye" rash.

"The only way to remove a tick is with tweezers, getting as close to the skin as possible," Lobes said, noting that using a lit match or other methods can agitate the tick and exacerbate the problem.

Not all ticks are infected with Lyme disease, but experts recommend erring on the side of caution. Other preventative measures include wearing light-colored clothing so ticks are easier to see, covering skin with long sleeves and pants, wearing closed-toe shoes and applying insect repellents such as DEET.

The Grand Traverse County Health Department logged no local reports of Lyme disease this year or in 2004, said medical director Michael Collins. Lyme is among the conditions doctors are required by state law to report, but Lobes said varying criteria for tracking Lyme cases make reliable statistics hard to find.

Ensfield and Survilla hope heightened awareness means doctors will look for the disease in patients and patients will be more proactive in recognizing potential symptoms.

"It should be one of the first things doctors look for if someone has any of the symptoms at all," Ensfield said.