Even after being treated for Lyme, Maine residents still blame their symptoms on tick bites
It started with a tick bite she found on her foot that probably hitched a ride home in May. A week later, Mare Rackliff was at a walk-in clinic and tested positive for Lyme disease.
Rackliff’s symptoms were classic and struck fairly quickly, starting with a rash surrounding the bite site. Then came exhaustion, another common symptom, often accompanied by severe joint pain.
“For three days I was on the couch,” said Rackliff, who is 39 and lives in Sanford. “When I got back to work, my boss looked at me and said, ‘You don’t look good, I’m going to take you home.'”
By the time she entered the clinic, the symptoms had progressed enough for the doctor to make an almost instant diagnosis of Lyme disease and prescribe a 10-day course of antibiotics.
Mare Rackliff suspects it’s the deer tick that infected her with Lyme disease; Rackliff has been suffering from symptoms of Lyme disease for over a month. Among his early symptoms was the telltale red ring rash around the bite site. Courtesy of Mare Rackliff
As the number and range of deer ticks increases in Maine, cases of Lyme disease in the state are on the rise. The most recent data shows 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 growing awareness has left many residents from Maine wondering if their symptoms could be from a long time ago. infections, although chronic Lyme disease is not a recognized illness and there is debate about how to treat it.
Lyme is carried and transmitted to humans by the bite of an infected deer tick, just like the one Rackliff says bit her in May.
This tick carried Borrelia, a bacterium responsible for Lyme disease. Once the bacteria enter the body, they usually cause a localized skin infection that looks like a target and then spreads throughout the body, including the heart, joints, and nervous system.
Rackliff’s initial diagnosis placed her among those suffering from what the medical community calls “acute Lyme disease” – someone who knew she had been bitten by a deer tick, had classic symptoms of Lyme and had been diagnosed and treated.
For a while, the treatment worked, Rackliff said. But the symptoms returned soon after she finished the antibiotics.
“I have good days and bad days,” she said. “Some days I wake up and everything hurts, I cry and it’s just awful. Pain and exhaustion go hand in hand.
She said doctors took her symptoms seriously and referred her to a Lyme disease specialist. Rackliff is still waiting for a date.
His experience is eye-opening and unfortunate, according to Dr. Robert Smith, director of infectious diseases 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 a 50% reliability due to the time it takes for the body to develop antibodies, Smith said. This is something that frustrates him and his colleagues.
“We don’t rely on blood tests early on if we suspect Lyme disease based on symptoms,” Smith said. “If we suspect it, we go ahead and deal with it.”
Equally frustrating for Smith and other doctors is treating people with 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 disease, but then relapse. Sometimes for years.
About 10% of patients with acute Lyme disease continue to experience musculoskeletal pain and cognitive problems after completing antibiotic treatment, according to a 2015 study by the Polish National Institute of Geriatrics, Rheumatology and Rehabilitation. There is some evidence that this is due to an individual’s autoimmune response to treatment.
Victoria, a southern Maine resident diagnosed with Lyme disease in 2007, was unable to fight it off despite years of antibiotic treatments, leaving her with what she calls “chronic Lyme disease,” a non-medical term for people with Lyme-like symptoms without clinical signs 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 is now an advocate for people 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 don’t take her experiences seriously.
Victoria said her symptoms started with what she thought was typical summer flu, but escalated into a decades-long search for a doctor to believe that her symptoms – exhaustion, pain, memory loss, confusion and complete inability to run his business – were the direct result of a single deer tick bite.
Victoria said she went to several doctors before finding one in 2007 who diagnosed her with Lyme disease based on her symptoms and took immediate action to treat it. She spent the next 18 months receiving aggressive intravenous antibiotic therapy in New York.
This treatment helped, but Victoria said she never fully recovered. Because the symptoms lasted so long and because her diagnosis was not confirmed by a blood test, Victoria’s case is considered chronic Lyme disease.
Treatment of symptoms that persist for more than a month with long-term antibiotics is controversial. Smith said guidelines for Lyme disease treatment include a 14-21 day course of antibiotics, although some cases are successfully treated with a 10-14 day course.
None of the research data makes a good case for long-term antibiotics, Smith says. Such treatment can have unwanted side effects, including gastrointestinal and cardiovascular problems.
Smith understands the frustration Lyme disease patients feel when that first antibiotic treatment doesn’t eliminate it. There are some for whom the symptoms of Lyme disease persist, despite treatment.
Victoria said she had regained some of her original health, but was far from cured and was dealing with lingering health issues which she said were triggered by the illness Lyme disease, including migraines, pain, exhaustion and depression for weeks – 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 of the nonprofit and advocacy organization. LymeDisease.org. Doctors and medical researchers have recognized that some people diagnosed and treated for COVID continue to experience symptoms long after treatment has stopped. She said advances that may occur in the treatment of COVID long-term could help advance treatments for chronic Lyme disease, a disease she says is very real.
“We know the symptoms they’re feeling are real,” Smith said. “It can be frustrating for patients and doctors that there is no [United States Food and Drug Administration]-an approved treatment for post-treatment Lyme disease and one of the pitfalls people can fall into is looking for something and doing something that will do more harm than good.