Pennsylvania DO’s new book delves into Lyme disease, tick-borne illnesses
Roughly 300,000 Americans are diagnosed with Lyme disease each year, announced the Centers for Disease Control and Prevention this month—an incidence 10 times greater than the agency previously estimated.
The author of a just-published book on tick-borne illness, Kathleen A. Spreen, DO, MPH, believes that the new estimate still falls short because Lyme disease and related tick-borne diseases are often misdiagnosed.
Lyme disease doesn’t always present in the same way and co-infections with other tick-borne illnesses frequently occur, complicating the diagnosis, says Dr. Spreen, a Lyme disease survivor. Her college-age son nearly died from a combination of Lyme disease and three other tick-borne infections, including babesiosis, a severe parasitic infection that can cause high fevers, respiratory problems, rigorous chills and anemia.
“If you get one tick-borne disease, it’s difficult enough to diagnose it,” Dr. Spreen says. “If you are infected by two or more pathogens, those pathogens affect each other and the immune system in ways that make it much more difficult to diagnose the disease.”
Dr. Spreen, who lives in southeastern Pennsylvania’s Chester County, which has one of the highest rates of Lyme disease in the country, spent several years researching and writing the more than 830-page Compendium of Tick-Borne Disease—A Thousand Pearls. Designed to be comprehensive, the textbook provides detailed descriptions of more than a dozen tick-borne diseases and the various types of ticks that can cause disease. The compendium covers diagnostic approaches, treatment options, disease management plans and preventive measures.
“My target audience is primarily family physicians, emergency physicians and other health professionals on the front lines of seeing patients,” Dr. Spreen says. “When a patient comes in and says, ‘I have a tick bite, and I’m feeling sick,’ a physician can use my book to go step-by-step through a differential diagnosis and then diagnose the disease and plan the course of treatment. The book does not prescribe how to practice medicine but just outlines the various options.”
The book is also aimed at people who have been diagnosed with or suspect they may have a tick-borne illness. “Dr. Spreen’s book is the greatest amount of information on tick-borne disease in one source that you could ever find,” says Douglas W. Fearn, the chairman of the Lyme Disease Association of Southeastern Pennsylvania, who has been infected twice with Lyme disease. “She did a tremendous amount of work gathering all of the data, talking to a lot of people, reading all of the literature and synthesizing the information into something very readable that can go on a physician’s desk.”
First recognized in the 1970s, Lyme disease, or borreliosis, is a multi-system infectious disease generally caused by the pathogen Borrelia burgdorferi. Over the years, physicians have adopted excessively simplistic guidelines for diagnosing and treating Lyme disease, while new variations of borreliosis and other tick-borne diseases have emerged, according to Dr. Spreen.
Misconceptions abound over Lyme disease, she maintains. The first is that Borrelia can only be transmitted by a deer tick. “We know very clearly that other ticks transmit the disease, including the Lone Star tick. Even the dog tick is now a suspect,” Dr. Spreen says.
A second misconception is that a tick must be attached to someone for at least 24 hours to cause infection. “That’s just silly,” she insists. “In all the confirmed cases of Lyme disease that I know of, I don’t know a single person who had a tick in place for 24 hours because nobody would knowingly leave a tick in place for that long. If you discover a tick on your body, you’re going to remove it right away.”
Studies performed on mice have shown that after 72 hours, an infected tick will transmit pathogens in 100% of cases. “That transmission rate goes down as the attachment time goes down. But it doesn’t go down to zero,” Dr. Spreen says. “We have many cases in which Lyme disease was transmitted in one or two hours, and certain other tick-borne diseases can be transmitted in less than 15 minutes.”
A third common misconception is that everyone who has Lyme disease develops a bull’s-eye rash, considered one of the telltale signs of the disease. “Probably fewer than 50% of people with Lyme disease have a skin rash,” Dr. Spreen says. “Of these individuals, most have a solid maroon oval rash, while maybe 10% to 20% have a bull’s-eye or target lesion.”
Dr. Spreen’s book also discusses in detail the problem of false negative tests for Lyme and other tick-borne diseases because, she says, laboratories don’t have sufficient understanding of the pathogens involved.
In addition, even when Lyme disease and other tick-borne diseases are correctly diagnosed, they are often ineffectively treated. Too often patients are prescribed doxycyline for less than a month and that’s it, Dr. Spreen says, noting that this antibiotic is not the best solo first-line treatment for all tick-borne infections and it should not be used to treat children.
“Although the majority of people who get Lyme disease do get well on a short course of antibiotics, never to be troubled by the disease again, there is a significant subpopulation of patients—perhaps 20% to 40%—who have ongoing persistent symptoms that can be debilitating,” Dr. Spreen says. “Some physicians say you never need treatment beyond a month. My opinion is that you treat people until they’re better or until they’re functioning well. Sometimes that can take years.
“The earlier that people are diagnosed and treated, the better chance of a successful outcome.”
Nan Crews, DO, of Lebanon, Pa., is one of those Lyme disease sufferers who never had an identifiable rash and suffered for years from fatigue, severe joint pain and brain fog before figuring out that she had the disease.
“It wasn’t until I took some penicillin for an unrelated dental abscess and all of my joint pain went away, that it finally dawned on me that I might have Lyme disease,” says Dr. Crews, who left a busy family medicine practice for a less-stressful career in osteopathic manipulative medicine.
Dr. Crews, who treats Amish families via house calls, frequently urges patients who have Lyme disease symptoms to get tested for the disease.
“Lyme disease is subtle and variable,” Dr. Crews says. “And when people have co-infections, they get very sick. Many people are being diagnosed with Parkinson’s disease, multiple sclerosis and Alzheimer’s disease when they really have tick-borne illness.
“Kathy Spreen’s book is desperately needed.”