Memorial Day signals the start of the summer season, but it also signals the re-emergence of ticks. To educate people about the dangers of tickborne Lyme disease and empower them to do something about it, LymeDisease.org—a patient advocacy group—has created a number of resources, including a symptom checklist.

“There are some symptoms of Lyme disease that not everyone has, but if you have them, they’re highly suggestive you have Lyme disease,” said CEO Lorraine Johnson.

The online symptom checklist asks users a series of questions about exposure, risk, and symptoms and then provides information about each. “When the person is done filling out the symptom checklist, they can print out a PDF of the questions, their answers, and our information and take that with them when they visit their physician to seek medical care if that’s necessary,” Johnson said.

In this way, the organization is educating both patients and physicians. And catching Lyme disease early “is critical because that’s the time when you can really nip this in the bud,” Johnson said. “The treatment cure rates are relatively high for early Lyme disease, but once you get past two or three months, you’re dealing with a disease that’s disseminated through the body.”

At this point, 70 percent of people with Lyme disease are diagnosed late when it’s much harder to treat, Johnson said, and it has “this profound impact on people’s lives in terms of productivity, quality of life, and the ability to be present with the family and to participate in the things that make life worth living.”

In addition to an informative website and the symptom checklist, LymeDisease.org has launched a patient registry, which it will use to collect data that will hopefully help find a cure for the tickborne illness.

Similar to the Framingham Heart Study, in which Boston University followed people with heart disease for decades “to identify common factors or characteristics that contribute to cardiovascular disease,” LymeDisease.org sees its role as trying to gather a lot of data on a disease where very little has been studied. “It was just considered to be a rare disease until 2013 when the CDC said it’s not really 30,000 cases a year, it’s 300,000 cases a year,” Johnson said. “So it’s not a little problem; it’s a big problem.”

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