Hopewell resident Patty Phillips has endured not one but two bouts of Lyme disease in the past 30 years — though she wonders if perhaps her more current symptoms are related to her original case in 1984, which she says was misdiagnosed and mistreated. While she had a high fever and flu-like symptoms years ago, recently, she said she had an ache in her shoulder, and felt as though she was experiencing memory loss. The 63-year-old chef attributes her decades of ongoing health problems to the late diagnosis of the condition.
Treated with a course of antibiotics delivered intravenously this past winter, however, Phillips said she was feeling better and that she remained hopeful.
Over the many years of her illness, Phillips said some people thought she was imagining her symptoms because she looked normal.
“The important thing is to look for the physical signs and to catch it early — when it piles up, it’s much more difficult to deal with,” she added.
For Phillips and tens of thousands of others, timing has remained an ongoing issue in the diagnosis of Lyme disease, as it can take four to six weeks for a person’s blood to show the antibodies that signal someone may have Lyme disease using current testing methods. A new test currently in trials, however, has shown success in identifying the presence of Lyme disease in the body much earlier — though local experts suggest that the extra time it buys may have limited value for the vast majority of those who contract and are treated for Lyme disease in its early stages.
Ever since Lyme disease was first “discovered” among a group of children with an especially high diagnosis of rheumatoid arthritis in Old Lyme, Conn., in the late 1970s, the condition has been surrounded by misconception all while increasing in prevalence.
“As of 2014, the CDC reported over 25,000 confirmed cases and at least 8,000 probable cases of Lyme disease nationwide, though these numbers could be as much as 10 times higher because not all cases get reported,” according to physician David Herman, a partner at New Jersey’s ID Care and an epidemiologist at University Medical Center of Princeton at Plainsboro.
N.J.’s a hot spot
Most commonly experienced throughout New England and the mid-Atlantic states, the upper north central states, and in several counties in northern California, Herman said that New Jersey is a hot spot for the disease, which is transmitted to humans by infected deer ticks largely residing in areas of grass and bushes inhabited by deer and mice.
Typically seeking out warm, moist areas of the human body such as the groin, the backs of the knees, or the underarms, ticks will feed on you and then fall off and crawl away, but they must feed on a person for at least 36-48 hours in order to infect them, said Herman, who said that it takes this long for infected bacteria in the tick’s gut to be regurgitated back into the host.
When this happens, however, the first symptom for 80 percent of victims is the development of a rash within a week or so that starts as a small red circle and enlarges, also known as erythema migrans, he said. “While it’s not always the characteristic bull’s-eye shape we’ve been sensitized to watch for, it usually continues to grow. If untreated, it may go away but can later develop into secondary symptoms involving the joints and nervous system, such as arthritis or a build-up of fluid in the joints, headaches, facial paralysis, and meningitis. Much later on it can even develop into encephalopathy, or inflammation of the brain, which triggers memory loss and trouble concentrating,” he said.
While its broad symptoms often lead many conditions to get blamed on Lyme that aren’t related, causing it to become a ‘wastebasket disease,’ “most victims see a physician at the point of the growing rash,” Herman said. Once they do, “Lyme is easily treatable with a 14-day course of antibiotics, which will cure 90 percent of patients, while 10 percent may require a second course.”
Telltale New Test?
The most widely used tests for Lyme disease — the most common of which is the “Antibody Test,” followed up by a “Western Blot” to confirm the diagnosis — can often turn up negative in the earliest stages of the disease, even when the characteristic rash is present, adding a frustrating element to the process for both doctors and patients alike.
However, a new test undergoing trial by researchers from the National Institute of Standards and Technology, Institute for Bioscience and Biotechnology Research, and Johns Hopkins School of Medicine may be able to detect the illness at the earliest time of infection, when currently available tests are often still negative.
“The complexity of Lyme disease, combined with lack of biomarkers to measure infection, has slowed progress” in diagnosing the condition, said study collaborator John Aucott, head of the Johns Hopkins Lyme Disease Clinical Research Center. “Now, thanks to recent advances in technology, the tiniest concentration of blood molecules can now be detected, molecules that were previously ‘invisible’ to scientists.”
But will this new method represent a breakthrough in the diagnosis and treatment of Lyme disease?
“This technique might be useful for detecting other tick-borne bacterial infections such as babesiosis and anaplasmosis, but in truth our current tests for Lyme disease are fairly effective,” Herman said. “If you have the characteristic rash during tick season (spring through fall), doctors will often just treat the patient with antibiotics — an approach that’s supported by the CDC. While this new method might be helpful for confirming early-stage cases of Lyme, that’s not really where the difficulty lies — it’s more with later-stage cases and chronic symptoms,” he said.
Dr. Phillip Baker, executive director of the American Lyme Disease Foundation in Lyme, Conn., agreed.
“While there’s much misinformation being disseminated on the reliability of currently used diagnostic tests, they’re not as bad as some people claim and are certainly much better than ‘a coin toss,’ ” Baker said. “Although it would be useful to have a test that diagnoses Lyme disease earlier, there are limitations on the practicality of such an objective when applied to an infectious disease that isn’t lethal or life-threatening,” he said.
To reduce the likelihood of contracting Lyme disease, Herman recommends showering after spending time outdoors to prevent a tick from firmly attaching itself and simply to remove any tick found with a tweezer rather than with potentially dangerous means such as hot oil or a match. “Though deer ticks are so small that they’re easily missed, especially for those with darker skin, freckles or a lot of body hair, routine tick checks after you’ve been outside in the grass are quite valuable,” Herman said.
For those who do contract Lyme disease, however, “if you catch it early, it’s completely curable the vast majority of the time.”