Preventing infection involves information. First, use of DEET-based repellants have been found effective, although like any repellant, they depend on proper use.
Checking for ticks after being in any tick-prone area becomes crucial, but ticks, besides being extremely small, can be found not just in wooded areas but also in backyards, and they can be brought indoors in the coats of family pets. There is no place that a tick cannot potentially linger, having hitched a ride on another animal, from a deer to a mouse.
Another product, Permethrin, can be used on clothing, but must not touch skin. Once applied, the fabric can touch skin, and some promethrin-impregnated clothing can be purchased.
Although the standard literature says ticks must be on the body for a significant period of time, a two-day timeframe is not universally recognized. Some believe a few hours is enough to transmit infection.
Also, standard showering may not remove all ticks.
Clothing, where they could hide, should be checked, and washed. But washing does not kill the ticks; at least 15 minutes in a dryer, however, has been shown effective, so tossing clothing into a dryer after a walk in the woods, for instance, could at least kill any ticks that hitched a ride home, but haven't yet attached to the skin.
Tom Valerio is still fighting Lyme disease, years after he was bitten by a tick.
But the Clinton resident and former teacher is concerned for many who may needlessly contract the disease, especially children.
“If you're not living with it, you don't understand how bad it is,” his wife, Evelyn, said.
“It's the most psychologically isolating disease,” Tom Valerio said. “That's what makes it most difficult for kids.”
The Centers for Disease Control and Prevention (CDC) recently stated Lyme disease was more prevalent than previously thought.
“Preliminary estimates released by the Centers for Disease Control and Prevention indicate that the number of Americans diagnosed with Lyme disease each year is around 300,000,” according to the new report, released in August.
“The new estimate suggests that the total number of people diagnosed with Lyme disease is roughly 10 times higher than the yearly reported number. This new estimate supports studies published in the 1990s indicating that the true number of cases is between 3- and 12-fold higher than the number of reported cases.”
Massachusetts had the fourth highest incidence.
Valerio said it is difficult for friends, neighbors and sometimes even family to understand the disease and its impact.
That becomes even more difficult for those who do not test positive for the disease, or one of the co-infections ticks can transmit along with Lyme disease, yet live with the disease and its many and varied symptoms.
Standard medical practice, such as that outlined in the state Department of Health and Human Services fact sheets, assumes a positive test result and then a three-week antibiotic regimen.
Many people, however, don't even get tested for Lyme as doctors chase symptoms expecting a variety of other causes.
Some, like Valerio, are tested for many things, and the symptoms may suggest a variety of diseases, but Lyme is not necessarily one of those.
But Valerio's mission is not just to see more research into the disease, but to prevent it.
He stresses the full name for the CDC includes the words “and prevention,” and he does not see much emphasis on that aspect.
Valerio is urging more education, including in schools, and said insurance companies could benefit financially if they funded such education efforts.
A prevented infection can translate into savings as numerous tests are run on a sick patient to try to determine the cause.
Valerio said ticks can easily be missed. A thorough examination is needed when in tick country, which includes wooded areas.
But ticks can just as easily be picked up in a backyard area, brought close to homes by animals from mice to pets.
Pets provide a nice fur coat in which ticks can hide until they find a human host, perhaps cuddled up next to the pet.
Complicating the issue for people like Valerio are the treatments, and tests that he said are not necessarily thorough enough to determine that Lyme disease is the culprit. He said he has been treated for other problems that doctors first thought were the cause of his symptoms, a scenario that others have repeated.
Lyme disease, he said, is not the first test doctors go to.
But more doctors are aware of the prevalence of the disease, even if they are limited in their ability to treat it with methods other than those in accepted medical practice.
Valerio said there are “Lyme literate medical doctors” who have a greater familiarity with the disease and treatment options.
According to the Massachusetts Department of Health and Human Services, “Lyme disease is the most commonly reported tickborne disease in the United States, accounting for more than 95 percent of all cases of reported tickborne disease.”
There are support groups to help those living with the disease, including groups in Groton, Sutton and Concord. But the network of people spreading information tends to grow as those who contract the disease grow.
Other support and information resources include LymeDiseaseAssociation.org.
Better treatment options may be coming for those who do test positive.
Legislation before the Massachusetts legislature would require that insurance companies cover Lyme disease.
Like any legislation, it draws many special interest groups, from insurance companies to doctors to the drug industry, as well as input from those living with Lyme Disease.
In 2010, legislation passed protecting doctors who prescribe long-term care based on clinical evidence a patient has Lyme Disease, protecting those who treat outside the standard used by most doctors, including use of long-term antibiotics.