A Minnesota family physician addressed a packed crowd in Canandaigua about a complicated and often hidden illness spread by infected deer ticks

CANANDAIGUA — More than 300,000 new cases of Lyme disease occur each year, but only a fraction of those get reported to health officials.

“Most cases of Lyme are out of sight,” said Dr. Elizabeth Maloney, a Minnesota family physician who addressed more than 200 people Thursday at The Inn on the Lake in Canandaigua. The Finger Lakes region is prime for tick-borne diseases — the region glowed along with other sections of the country on a map Maloney showed identifying hot spots.

Many in the crowd had been directly affected by tick-borne illnesses, which come from the bite of an infected blacklegged (deer) tick. Bill Wheeler of South Bristol, who shared his experience along with others during a question-answer session, is a victim of Lyme, as are family members. A number of people from the Canandaigua area recently formed a support group to help cope with the illnesses.

Maloney encouraged such support groups. The infection and disease are often hard to identify and treat and support groups can offer some relief in dealing with all that, she said.

“Lyme disease is a complicated illness caused by a complex bacterium; it is not the black-and-white illness portrayed in simplistic review articles and lectures,” said Maloney, who turned her focus to Lyme more than a decade ago. That is when she noticed her patients’ symptoms and response to treatment didn’t fit what she had learned about Lyme. In 2015, she founded Partnership for Tick-Borne Diseases Education. The nonprofit educates the public and medical providers based on the latest scientific research — its materials being continually updated because “scientific understanding of Lyme and other tick-borne diseases continues to evolve,” she said.

The event, “What Everyone Should Know About Lyme Disease,” was a program of The Wellness Hub offered by UR Medicine Thompson Health.

Take-aways

Tick-bite infections can come from several different species and strains of bacteria. Some people develop substantial short- and long-term disabilities. Lyme disease occurs in stages, but not everyone experiences each stage — and symptoms and patterns differ from patient to patient. Symptoms may come and go, vary in intensity, disappear entirely or progress.

Early Lyme disease occurs within two to 30 days of a bite; 70 percent of cases reported to the U.S. Centers for Disease Control and Prevention develop a rash at the site of the bite. “Thirty-percent of people have no identifying rash,” said Maloney. The rash is most often oval-shaped and solid-colored — less than 20 percent are the bull’s-eye shape.

If you develop a rash and flu-like symptoms, you are lucky because that makes it easier to identify Lyme. “If you have a summertime flu, see your doctor,” Maloney said.

Beware of blood tests in the early stage. “It could confuse the picture,” she said.

For that matter, blood tests are also difficult at any stage: “A negative test cannot rule out Lyme disease,” the doctor said.

While blood tests can confuse diagnosis, “it is no badge of honor to have Lyme. So be open, let your doctor explore all the possibilities because you want to get it right,” she said.

Lyme in later stages can develop over weeks to years after a bite. Fatigue, muscle and joint pain, severe headaches, stiff necks, weakness or paralysis of facial muscles, and trouble sleeping and concentrating are some of many possible symptoms. Lyme can look like a lot of other diseases, including multiple sclerosis, Parkinson’s, ALS (Lou Gehrig’s disease) and Alzheimer's.

Prevention

The best means of prevention, according to Maloney: Avoiding ticks. They don’t jump, fly or fall from trees. They hang out on the edge of vegetation and latch on from where they are. Avoid areas where ticks thrive — in long grass, brush or leaf litter. Stay in the center of hiking and biking trails, keep your lawn grass short and have playgrounds, lawn furniture and other places you go in sunny areas. Bird feeders and wood piles attract tick-carrying mice, so keep them far from the house. Don’t feed deer or use plants that attract them.

“Never sit on a fallen log!” Maloney said. Ticks love it there.

Odds are good that if you remove a tick from your skin within 24 hours you will not become infected.

Certain antibiotics may reduce the risk of Lyme if taken within two days of a bite. Contact your doctor immediately after a bite to discuss strategy. Don’t wait, because there is 30 percent chance you will not develop a rash and a blood test shortly after a bite is especially unreliable.

If you have pets, be sure to check them for ticks and keep them away, if possible, from tick-infested areas. Consult your veterinarian about prevention and treatment. Know that ticks on pets raise your risk of being bitten.

Dress for success

Cover yourself as much as possible, and tuck pants legs into socks. Ticks won’t bite through clothing. When you come inside, strip off all your clothes and check your entire body for ticks. Put dry clothes in a hot dryer for 15 minutes. Dry wet clothing for one hour on the hottest setting.

Maloney spoke highly of using insecticides and repellents. She said the insecticide Permethrin is essential to prevention and can be applied to clothing and gear.

For those wanting a natural repellent to use on unbroken skin, she said Oil of Lemon Eucalyptus, unlike other herbal repellents, has been shown in trails to be effective.

How do you remove an imbedded tick?

She said you don’t need special tools and there is no need to panic. With tweezers or even your fingernails if you don’t have tweezers, grasp the tick as close to your skin as possible (the tick’s head if you can) and pull straight up with steady pressure until the tick is out. Then wash the bite area with soap and water. Save the tick if possible in a resealable container so it can be examined or tested.

Find local support

The Ontario County Lyme Support Group meets the third Wednesday of every month, from 6:30 p.m. to 8 p.m. at the Canandaigua Fire Hall, 335 S. Main St. Learn more on the Facebook page or contact OntCtyLyme@gmail.com.