What we now know as Lyme disease started as a medical mystery.
An August 1976 circular letter from the Connecticut Department of Health alerted the medical community that several cases of arthritis had been reported among children around the town of Lyme during the previous November.
The letter describes the symptoms common among the 51 residents of the area who had similar experiences with arthritis. The arthritis was described as “usually short and mild but often recurrent attacks of pain and swelling in a few large joints, with longer intervening periods of no symptoms at all.”
About half of the patients also reported fever, headaches, weakness and a skin rash. About a quarter of them also had “an unusual skin lesion” before they started to experience joint pain, according to the letter.
That the cases centered in one geographic area, and that the symptoms started in the summer and early fall led researchers to believe early on that the disease was caused by an insect. By 1977, the black-legged, or deer, tick was linked to the transmission of the disease though it took another five years for the specific bacteria that causes Lyme disease to be discovered.
Lyme disease has spread since those first 51 cases were documented. Ninety-five percent of the nation’s reported 30,000 cases of Lyme disease were found in 14 states, located primarily in the northeast, according to the Centers for Disease Control and Prevention.
Pennsylvania has been the leader in reported Lyme disease cases for the past six years, nearly tripling the number of cases reported in neighboring New York, which was second on the list of states with reported instances of Lyme disease.
Based on the stories they hear, representatives from the Pennsylvania Lyme Resource Network believe the actual number of cases of Lyme disease is much higher.
“We say multiply that by 20, 30, 40. It’s a lot worse than the government is saying,” said Eric Huck, co-founder of the advocacy group. “I know hundreds of people who do not have a CDC-positive test.”
Data from the state Department of Health show increasing numbers of Lyme disease cases reported in the state. In 2016, there were 89.4 cases of Lyme disease per 100,000 people. That represents an increase from 73.6 cases per 100,000 in 2015, which was an increase from the 58.6 cases per 100,000 people in 2014.
That statistic has to be taken in context. The count for Pennsylvania may look higher compared to others states, but many high-incidence states no longer attempt to count all of their cases, said Nate Wardle, emergency preparedness public information officer at the state Department of Health.
The reason behind the increase in the incidence of Lyme disease is more difficult to pinpoint. Wardle said it is difficult to know whether there are more actual cases of Lyme, or how much of the increase is due to additional surveillance efforts in jurisdictions and greater awareness, testing and reporting of Lyme disease on the part of health care providers.
The CDC separates the symptoms for Lyme disease into two stages: early signs and symptoms, which occur three to 30 days after a tick bit and later signs and symptoms, which occur days to months after a tick bite.
Early symptoms include fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes.
The most visible of the early symptoms is a rash at the site of a tick bite which appears an average of about seven days after the bite. The rash expands gradually and may grow to 12 inches or more across. It may clear as it enlarges, which gives the rash its distinctive bull’s-eye appearance.
There is, however, some disagreement as to how common the rash is among Lyme patients. The CDC says the rash occurs in 70 to 80 percent of infected people. Organizations like the Lyme Resource Network say up to 50 percent of the patients never see a bull’s-eye rash.
That could be because the rash may not appear as the classic bull's-eye. Dr. Timothy Stonesifer of Cumberland Valley Parochial Medical Clinic in Shippensburg said there may be people who had a small rash but thought it was a different type of bug bite.
“We’ve been fooled over the years by thinking it has a ring,” he said.
Later signs and symptoms listed by the CDC include severe headaches and neck stiffness, additional rashes, arthritis with severe joint pain and swelling, particularly in the knees and other large joints, facial palsy, intermittent pain in tendons, muscles, joints and bones, heart palpitations or an irregular heartbeat, episodes of dizziness or shortness of breath, inflammation of the brain and spinal cord, nerve pain, shooting pains, numbness or tingling in the hands or feet, and problems with short-term memory.
In addition to the symptoms outlined by the CDC, the Pennsylvania Lyme Resource Network also lists the following symptoms: extreme/persistent fatigue, insomnia, sleep disorders, speech disorders, nightmares, suicidal thoughts, TMJ, dry eyes, GI problems, newly developed allergies, hormonal fluctuations or changes, depression, anxiety, exercise or alcohol intolerance, night sweats, swollen glands and low body temperature, among others.
Diagnosing Lyme disease can be a challenge.
The CDC says three factors should be considered in determining whether a patient has Lyme. The first is the potential for the patient to have been exposed to ticks in areas prone to Lyme disease. Signs and symptoms of illness and results of blood tests are also factored into a diagnosis.
A two-stage testing process is used. Both tests measure antibodies that the body makes to combat the bacteria that causes Lyme disease. If the first test returns a negative result, no further testing is done. If that first test returns as positive or uncertain, a second test is ordered.
The test, however, has come under fire for being inaccurate. Huck said as many as 50 percent of those with Lyme disease had a negative test result.
In its September 2015 report, the Task Force on Lyme Disease and Related Tick-Borne Diseases wrote, "The most critical research gap is the lack of a gold-standard test for Lyme and for other tick-borne infections; a test that can quickly and accurately diagnose the disease, and prove or disprove ongoing persistence."
The task force had been created by Act 83 of 2014 and charged with improving the state's response to tick-borne illnesses.
Stonesifer said there is increasing pressure on both the Centers for Disease Control and the FDA to create a more accurate test, possibly within the next year.
Stonesifer’s practice is one of 15 test sites across the East Coast conducting a borella culture study that could pave the way for a more accurate test that could eventually be developed into a urine test.
“If we get new testing, it will be a game changer,” he said.