This story discusses suicide. If you or someone you know is at risk of suicide please call the U.S. National Suicide Prevention Lifeline at 800-273-8255, text HOME to 741741 or go to SpeakingOfSuicide.com/resources for additional resources.
The family of a 22-year-old woman who had been struggling with Lyme disease is mourning her death after she took her own life this month.
Amelie Champagne had spent years trying to figure out what was wrong before getting a positive test for the condition in June, her father shared in an online post last week.
“Over time and despite the recent treatments, the disease had evolved way beyond the numerous physical symptoms and was now severely impacting her brain,” Alain Champagne, an executive in Montreal, Quebec, wrote on LinkedIn.
“Lyme essentially highjacked her…She was so courageous throughout this ordeal … she decided to free herself from the unbearable pain. We are confident she is now in peace.”
Before her suicide, Amelie’s loved ones witnessed how challenging life had become for her in dealing with the “evolving Lyme disease symptoms,” Champagne wrote.
“Despite the struggles of the past few years she persevered through university, kept working at a respite center for handicapped kids, was starting to volunteer at a homeless shelter near our place,” he noted.
“The resilience and continued optimism she displayed while dealing with the ever increasing symptoms was and remains my main source of inspiration.”
The toll of Lyme disease
Lyme disease, which was recently estimated to have infected more than 14% of the world’s population, is transmitted to humans through the bite of infected ticks. In the U.S., about 30,000 cases are reported to the Centers for Disease Control and Prevention each year.
Most people know it can cause a hallmark bull’s-eye rash, but some patients may have more ambiguous warning signs that could be missed by a doctor, making an infection difficult to diagnose and delay timely antibiotic treatment.
If left untreated, the infection can spread to joints, the heart and the nervous system, producing a wide range of symptoms, the CDC noted. They can include life-disrupting issues such as severe headaches, neck stiffness, arthritis with severe joint pain and swelling, dizziness, shortness of breath, nerve pain and inflammation of the brain and spinal cord.
Lyme disease patients have an increased risk of mental disorders, affective disorders, suicide attempts and suicide, a study published last year in The American Journal of Psychiatry found.
Depressive states among patients with late Lyme disease are “fairly common,” ranging across studies from 26% to 66%, researchers reported in another article published in the same journal.
But there’s no evidence Lyme disease directly causes changes in the brain associated with mental health issues or mental illness, though its effects on the whole body can be difficult for patients to cope with, said Dr. Andrew Nowalk, clinical director of infectious diseases at UPMC Children’s Hospital of Pittsburgh. He didn't treat Amelie Champagne, but commented in general.
“Folks who have a delayed diagnosis — because of the vague nature of some of the symptoms sometimes — can suffer greatly from a lot of chronic symptoms that even the antibiotics don’t seem to do a lot for in individual patients,” Nowalk, who researches Lyme disease, told today.
“So it can be a very trying and at times debilitating disease if the diagnosis is made late.”
Problems can linger after treatment
Some of the frustrating issues can include fatigue, cognitive changes — which a lot of patients refer to as brain fog — and pain, he noted. Since they’re non-specific and could apply to other conditions, such as long COVID-19, they can go undiagnosed for a long time. If a patient seeks help from a primary care doctor, there’s nothing in routine blood work that would point to Lyme disease, Nowalk said.
The test for Lyme disease, when it’s sent, is very reliable, but it requires a practitioner who recognizes the symptoms and submits the test, he added.
Even when a diagnosis is made, problems can linger.
“The first step is to treat the patient with appropriate antibiotics, because you need to get rid of the infection,” Nowalk said.
“But the challenge of late Lyme disease is that those symptoms that the patient had had for a while often don’t respond quickly to the antibiotics.”
Managing those issues can require a team of experts that includes physical medicine and rehabilitation doctors who have expertise in dealing with fatigue and muscle pains, behavioral health specialists and alternative medicine practitioners.
In some cases, that's still not enough. For Amelie Champagne's family, "every breath and every moment is painful," after her death by suicide, her father wrote. "We will love you forever."
