It was years before the 38-year-old mother from New Hampshire realized she was infected with the very spirochete she dealt with every day. Andrea Caesar worked in a naturopath’s office that commonly dealt with Lyme disease, but it was only when symptoms she had dealt with became debilitating that she realized she couldn’t keep silencing her pain. Andrea Caesar was not diagnosed with Lyme disease, an infection caused by a tick-borne bacteria called Borrelia burgdorferi, until 2012. It had been a long journey since her symptoms began in 1986, as a young girl. She had been suffering with arthritis, chronic fatigue and a variety of mood issues she called “Lyme rage.”
Sometimes, it feels like it’s mono,” Caesar said, but the symptoms also came in the form of migraines and even seizures. She kept her sanity by chronicling her story via blog, now a book, A Twist of Lyme.
A coast away, Jenny Bilodeau, a flight attendant in Los Angeles, suffered a similar fate. She spent more than six months in 2012 “completely drained” and shuttled from doctor to doctor before she was diagnosed with Lyme. “I didn’t fit into the box of this or that illness with my symptoms,” she said.
Today, the problem of diagnosing Lyme can be summed up in a phrase: we caught it too early, or we caught it too late. Because of the complexity of diagnosing Lyme disease, many people like Caesar and Bilodeau suffer infections for months or years before being diagnosed, and progress to late-stage Lyme symptoms, including debilitating fatigue and neurological symptoms. Often times, they are not fully cured even after a two- to four-week dose of antibiotics. And their stories ring with the same emotion:I was suffering, and I was ignored.
“I’m not completely how I used to be.”
It was March 2012 when Bilodeau ate a bowl of pasta for dinner. Soon after, she experienced a hypoglycemic episode: a sugar “high” and a subsequent crash.
She was no stranger to these hypoglycemic episodes, but they only happened very infrequently. Bilodeau usually ate something to perk up her blood sugar and her body would immediately recover. She’d always been able to bounce back.
After a long day of caring for her young baby, she went to sleep and knew she’d feel like herself in the morning.
Except she didn’t. And that was when she knew something was really wrong.
“I couldn’t get up out of bed. It was the kind of exhaustion you have when you have the flu – but it didn’t go away,” Bilodeau said. She remained bedridden with limited mobility for a month and had to abandon normalcy. When she finally had enough energy to get up and out of her house, Bilodeau ran to the doctor. And for more than a month, she ferried back and forth from home to his office. He would run a test each week and she would wait for the results. When the results return negative, they moved on to another diagnosis. Each test came back negative, and Bilodeau was still dragging at her low energy levels. Her doctor didn’t know what was wrong with her, and referred her to an endocrinologist.
The medical shuffle over to the endocrinologist meant more tests – could it be her thyroid? Or diabetes? Or insulin resistance, perhaps — but there were no answers.
All of her stats were within a normal range, so the endocrinologist proclaimed her healthy. She said she felt far from normal and knew if she examined her life hard enough, there had to be a reason for her bizarre symptoms.
Bilodeau had lived in Plainsboro, New Jersey, for more than ten years before her move back to Los Angeles. She frequently went hiking in the Plainsboro Nature Preserve – her own mother-in-law contracted Lyme disease after hiking in a park the family frequented near their home. Once Bilodeau connected the dots, she requested a blood test for Lyme and received a positive diagnosis.
But while an oral regimen of antibiotics helped, it wasn’t enough to cure all of her symptoms.
She still felt only a shred of the energy she used to have. Her most prominent symptoms were her sugar highs and subsequent crashes, a sign that she thought meant that something was wrong with her adrenal glands.
“I’d have a bite of toast, or a spoonful of rice, and I’d immediately experience a sugar rush,” Bilodeau said. The subsequent crash each time was more intense than any hypoglycemic episode she had before, leaving her shaky and weak. The only way she could prevent fatigue, she had read, was to severely limit carbohydrates.
The difficult dietary regimen was not a miracle fix for Bilodeau. For up to four months after she began her dietary changes, her body had trouble processing the energy food gave her. “I only had energy while the food was actually in my stomach,” Bilodeau said. She would eat before bed and wake every two hours, weak and ravenous.
Two years later, she is still not at 100 percent, she says. She avoids long excursions and continues to be easily fatigued. “I’m working again, but I’m not completely how I used to be,” Bilodeau said.
“I felt like I was going crazy.”
Writer Hannah Moskowitz remembers falling asleep in class. At the time, she was a high school student with a love of A.P. biology and a reluctant spot on the lacrosse team. As an “A” student, she found her grades plummeting, even in her favorite classes, because she struggled to get out of bed in the morning.
It was only later that she realized the extreme fatigue was a classic Lyme disease symptom. The forgetfulness came soon after.
“I would find out that there was a test that day and it would feel like the first I’d heard of it, and I’d have papers due I’d just forget to write,” Moskowitz said.
Moskowitz’s mother suggested they test for Lyme disease on the advice of a friend. It was a last-ditch effort to figure out what was wrong. Although there must have been a tick bite, she doesn’t remember one. Nor had she experienced the “bull’s eye” rash.
No one suspected the blood test would return positive. At the time, in her hometown of Silver Spring, Maryland, Lyme disease was an unusual diagnosis.
“I really thought they were never going to figure out what was wrong,” Moskowitz said. “I was embarrassed going to doctors all the time because I felt like I was wasting their time – It felt like I was going crazy.”
The infection itself can cause neurological symptoms “weeks, months, or years after the initial diagnosis,” according to The National Institute of Health. It’s even possible patients with such complications may experience forgetfulness, or have trouble with other neurological tasks that were once simple, according to The National Institute of Neurological Diseases and Stroke.
In a July 1993 study, Lyme infections were shown to present with psychiatric manifestations, including signs of depression and mania similar to those characterized by bipolar disorder.
More recent studies have also suggested negative cognitive aftermath of the spirochete disease. A 2002 study suggested that symptoms of cognitive dysfunction (either in the form of episodes of depression or even dementia) might be linked with Lyme infection up to six months after the initial infection.
Additionally, diseases that are resistant to treatment, such as Lyme disease and other illnesses such as chronic obstructive pulmonary disease (COPD) can lead to chronic depression. In 2006, a study found incidences of depression in 40 percent of people with COPD. The long search for diagnoses can take a toll, too. According to a University of South Florida study, up to 50 percent of patients who turn to their doctors fail to receive a diagnosis. The symptoms of Lyme disease may also look to some physicians like what used to be called “psychosomatic” illness, that is psychiatric disorders that cause physical symptoms.
In fact, according to a presentation by Columbia University psychiatrist Brian Fallon, such disorders—now called “somatoform” illnesses—are rare, striking less than 2 percent of women and 0.2 percent of men. For undiagnosed Lyme patients, such a label may feel a lot like “medical shaming,” a subset of shaming, such as this fat shaming incidence shared in the online feminist publication XO Jane, which is becoming more and more prevalent in the healthcare setting.
“I knew it wasn’t in my head,” Caesar said. “There was something more to this, but it took me a long time to find someone who would keep investigating.”
But when she finally found out she had Lyme disease, she had mixed feelings. While she was relieved for an answer and a plan, she knew recovery would be a difficult and expensive process.
“I knew it would cost the amount of a house to treat it,” Caesar said. “I feared for my health and for the health of my daughter.” After 10 months of intravenous antibiotics and more than a year of oral antibiotics, which she still takes, she has seen some improvement, but she’s not cured. She now considers herself about 80 percent better than the darkest times of the disease.
On rough evenings, she relies on her parents to help her care for her young daughter.
“Some days, though, I feel like a person,” Caesar said.