It started with a bite from a tick she found on her foot and that likely hitched a ride into her home in May. A week later, Mare Rackliff was at a walk-in clinic testing positive for Lyme disease.
Rackliff’s symptoms were classic and hit fairly quickly, beginning with a rash circling the bite site. Then came the exhaustion, another common symptom, often accompanied by intense joint pain.
“For three days I was on the couch,” said Rackliff, who is 39 and lives in Sanford. “When I went back to work my boss looked at me and said, ‘You don’t look good, I am going to bring you home.’”
By the time she walked into the clinic, the symptoms had progressed far enough that the doctor was able to make a near-instant diagnosis of Lyme disease and prescribed a 10-day course of antibiotics.
Mare Rackliff suspects this is the deer tick that infected her with Lyme disease; Rackliff has been dealing with symptoms of Lyme disease for more than a month. Among her early symptoms was the telltale red circle rash around the bite site. Courtesy Mare Rackliff
As the numbers and range of deer ticks expand in Maine, cases of Lyme disease in the state have been on the rise. The most recent data show 1,118 cases diagnosed in the state in 2020. People recently bitten by ticks can receive prompt diagnoses and antibiotics to cure them of the disease, but the growing awareness has left many Mainers wondering if their symptoms could be from long-ago infections, even though chronic Lyme is not a recognized medical condition and there’s debate over how to treat it.
Lyme is carried and transmitted to humans through a bite from an infected deer tick, just like the one that Rackliff figures bit her in May.
That tick was carrying the Lyme disease-causing bacteria species Borrelia. Once the bacteria get into the body they typically cause a localized skin infection that has a bulls-eye pattern, then spread throughout the body, including the heart, joints and nervous system.
Rackliff’s initial diagnosis placed her among those suffering from what the medical community refers to as “acute Lyme disease” — someone who knew she had been bitten by a deer tick, had classic Lyme symptoms, and was diagnosed and treated.
For a while, the treatment worked, Rackliff said. But the symptoms returned not long after she was done with the antibiotics.
“I have good days and bad days,” she said. “Some days I wake up and everything hurts, I cry and it is just horrible. The pain and exhaustion go hand in hand.”
She said doctors have taken her symptoms seriously and have referred her to a Lyme disease specialist; Rackliff is still waiting for an appointment.
Her experience is telling and unfortunate, according to Dr. Robert Smith, director of infectious disease at Maine Medical Center who has spent 30 years studying Lyme disease. Early detection, he said, is key to treatment, but it can be tricky.
The only blood test for Lyme disease has 50 percent reliability due to the length of time it can take for the body to develop antibodies, Smith said. It’s something that frustrates him and his colleagues.
“We don’t rely on the blood tests early on if we suspect Lyme disease based on symptoms,” Smith said. “If we do suspect it, we go ahead and treat it.”
Equally frustrating for Smith and other doctors, is treating people who suffer from long-term symptoms. Smith refers to patients such as Rackliff as having “post-treatment Lyme disease,” who show initial improvement after treatment for acute Lyme, but then relapse. Sometimes for years.
About 10 percent of acute Lyme disease patients continue to experience musculoskeletal pain and cognitive issues after completing their course of antibiotics, according to a 2015 study by the Polish National Institute of Geriatrics, Rheumatology and Rehabilitation. There is some evidence it is due to an individual’s autoimmune response to the treatment.
Victoria, a southern Maine resident diagnosed with Lyme disease in 2007, has not been able to fight it off despite years of antibiotic treatments, leaving her with what she refers to as “chronic Lyme disease,” a non-medical term for people suffering from Lyme-like symptoms with no clinical evidence of infection.
“It’s been a horrible journey dealing with this disease,” said Victoria, who believes she contracted it from a tick bite in 2000 and now advocates for those with Lyme disease.
Victoria, 58, agreed to speak about her experiences using only her first name to protect her identity. She said she feels stigmatized by people who do not take her experiences seriously.
Victoria said her symptoms began with what she thought was typical summer flu but turned into a decades-long search for a doctor to believe that her symptoms — exhaustion, pain, memory loss, confusion and a complete inability to run her business — were the direct result of a single deer tick bite.
Victoria said she consulted several doctors before she found one in 2007 who diagnosed her with Lyme disease based on her symptoms and took immediate steps to treat it. She spent the next 18 months receiving aggressive intravenous antibiotic therapy in New York.
That treatment helped, but Victoria said she has never fully recovered. Because the symptoms have lasted so long, and because her diagnosis was not confirmed with a blood test, Victoria’s case is considered chronic Lyme disease.
Treating persistent symptoms for more than a month with long-term antibiotics is controversial. Smith said the guidelines for treating Lyme disease include a 14- to 21-day course of antibiotics, though some cases are successfully treated with a 10- to 14-day course.
None of the research data make a good argument for long-term antibiotics, according to Smith. Such treatment can have adverse side effects, including gastrointestinal and cardiovascular problems.
Smith understands the frustration patients with Lyme disease feel when that initial course of antibiotics does not clear it up. There are some for whom the Lyme disease symptoms persist, in spite of treatment.
Victoria said she has regained some of her original health, but is far from cured and is dealing with ongoing health issues she believes were triggered by Lyme disease, including weeks-long migraines, pain, exhaustion and depression — all symptoms of both post-treatment and chronic Lyme disease.
The current COVID-19 pandemic could help change that, according to Lorraine Johnson, chief executive officer at the non-profit and advocacy organization LymeDisease.org. Doctors and medical researchers have acknowledged some people diagnosed and treated for COVID continue to experience symptoms long after the treatments stop. She said advances that may come in treating long-term COVID could help advance treatments for chronic Lyme disease, a condition she believes is very real.
“We know the symptoms they are feeling are real,” Smith said. “It can be frustrating for patients and physicians that there is no [United States Food and Drug Administration]-approved treatment for post-treatment Lyme disease and one of the traps people can fall into is searching for something and doing something that is going to do more harm than good.”
