Arriving for the first time at a gorgeous Australian beach, I was stunned to find nobody in the water and signs explaining that a certain local jellyfish can turn a refreshing swim into a fatal one. Years later, during a trip to South America, the locals warned of a common, biting bug that carries a microscopic pathogen responsible for Chagas disease, an ailment with a years-long incubation that eventually debilitates its victims with extreme fatigue, digestive failure, and heart damage that can be fatal (and may have been one of Charles Darwin’s unintended mementos from his South American travels). Visitors to the Hudson Valley may be surprised to see the warnings of ticks and Lyme disease, even in tiny urban parks; worse off are those who missed the signs and return home to develop a mysterious illness their doctors don’t recognize.
We live in one of the hottest spots for Lyme disease in the nation (Dutchess and Columbia counties were two of the three counties nationwide tallying over 300 cases per 100,000 people for three years running; the other was Dukes County in Massachusetts). Because of that, citizens as well as medical professionals tend to be better informed about tick-borne illnesses, especially Lyme disease, than in many parts of the country. Nearly everybody understands that Lyme disease is a vector-borne illness, meaning that the pathogen that causes it (the spirochete bacteria Borrelia burgdorferi) gets into people through a middleman (rather, middlecritter) that unwittingly shuttles the pathogen around. In our region, the predominant vector that shuttles Borrelia is the deer tick (also called the blacklegged tick, or Ixodes scapularis), though mosquitoes, fleas, and mites are also vectors. Tick eggs are pathogen free, but during the blood meals that fuel its progression from larva to nymph to adult, each tick may acquire the bacteria by feasting on the blood of an animal “reservoir”—one that had previously been bitten by a bacteria-carrying tick and now serves as a bacteria incubator. Borrelia reservoirs include mice, voles, moles, and several kinds of birds. Ticks in our area also may carry pathogens for other illnesses, namely, human granulocytic anaplasmosis (formerly known as human granulocytic ehrlichiosis) and babesiosis.
Ironically, in spite of our tick awareness, many people still don’t get early or sufficient medical care. A number of problems hamper diagnosis and treatment, and fuel controversies over such basics as whether there is such a thing as chronic Lyme. Dr. Steven Bock of the Rhinebeck Health Center and the Center for Progressive Medicine in Albany has been working with Lyme disease for about 25 years now and has seen close to 6,000 cases. He names several key challenges with the illness:
About half of people who come down with Lyme symptoms never find a tick or a bite, or the bull’s-eye rash (erythema migrans, or EM) characteristic of Lyme.
Symptoms of early Lyme disease (headache, fever, fatigue, muscle aches) may be dismissed as other problems, such as flu, joint injury, overwork, or even psychological issues like depression.
Symptoms of long-term infection with the Lyme pathogen may be quite different from the hallmark picture of impaired nervous system function, vision problems, heart dysrhythmia, and/or joint damage.
Lyme-causing bacteria can linger in certain tissues or within cells where the immune system cannot readily detect and destroy them, causing recurrent and varied symptoms, and inconsistent test results.
Patients may have concomitant infections with other bacteria or parasites carried by ticks, each of which requires a different course of treatment.
Diagnosis and treatment decisions are often based on the results of laboratory tests that are not very sensitive, especially in the first few months after a tick bite, and can give false negatives (finding no infection when there is one); people can test negative for years while still having symptoms.
The Great Pretender
Lyme hardly ever looks like the textbook example of a tick bite followed by the EM rash, then neurological symptoms, fatigue, and joint pain, says Bock. “Lyme is like the great pretender, like syphilis used to be. Lyme presents itself in different ways in each individual person. There is a pattern, but that doesn’t mean that every case is the same. It depends on the patient’s history and circumstances. Some of my patients have seen seven or eight specialists trying to diagnose the problem. They may have symptoms that are staggered over time, or one isolated symptom.” He also notes that children’s symptoms can include learning and behavioral problems; often it’s their mothers who recognize that something is just not right.