Ramara Woman's Decade-Long Lyme Disease Struggle Exposes Gaps in Persistent-Symptom Care

Jen Fisher can name the day her life changed: May 22, 2016. She had a rash on her hip, small enough that it hardly seemed to matter, and she went to the emergency room the same day. It was the classic bullseye, the one reliable marker of Lyme disease. She was treated promptly. She says she knew little about the illness then and trusted what the doctor prescribed. "If I had known more I would have advocated harder for myself at the time," she says.

The treatment was three days of antibiotics, partly because doctors were waiting on blood work results. Fisher thought it was over. It wasn't. She had not considered Ramara a risk area for ticks and had not thought about them when she waded through tall grass. Lyme disease is the most common tick-borne disease in Canada, carried by the blacklegged tick, also called the deer tick. Diagnosis rests on signs, symptoms, exposure and blood tests, and the symptoms vary from person to person and can mimic other illnesses.

Her own situation was more complicated. Fisher also has ankylosing spondylitis, a chronic autoimmune and inflammatory arthritis that targets the spine. It complicates other diagnoses and adds risk. Over the following months and years she experienced weakness, brain fog, and a body that would not retain food. She lost her vision at one point and endured severe pain. "My nerve endings were on fire ... it felt like I was being held in a vat of acid at one point," she says.

Because she believed the Lyme infection had been dealt with, the progression of her symptoms went unchecked. She felt generally unwell and found herself needing naps to get through the day. She raised the symptoms with her family doctor and her rheumatologist at regular visits. It wasn't until 2018 that Lyme disease came back into the conversation. While going over her whole medical history, a doctor arrived at the May 2016 episode and told her: "Jen, you never had Lyme disease. You have Lyme disease."

Fisher believes she should have been given weeks or months of antibiotics at the start, while acknowledging her case is unusual. The International Lyme and Associated Diseases Society set guidelines in 2014 recommending a minimum of 21 days, and longer for someone immunocompromised. The Simcoe Muskoka District Health Unit says an untreated initial infection may become hard to treat and can lead to joint, heart and neurological symptoms. A 2022 Johns Hopkins study found that 14 per cent of patients treated promptly for 21 days developed post-treatment Lyme disease syndrome, or PTLDS, diagnosed when symptoms last more than six months after treatment. The Johns Hopkins centre also recognizes that about 20 per cent of diagnosed patients are burdened by it. Research points to several coexisting causes, but the condition is not fully understood.

In Canada, Health Canada recognizes PTLDS as something to manage symptomatically, not as a chronic illness, and there is no continuous antibiotic treatment. Fisher understands why: long-term antibiotics carry real dangers, including disruption of the gut microbiome, permanent digestive problems, and bacteria adapting until the drugs stop working. Still, she argues, "If you're not treating the disease and you're only treating symptoms, the disease remains." She expects to live with symptoms for the rest of her life and thinks much of what she deals with today is still Lyme related. After years of specialists, tests and blood work sent to other countries, she has turned to advocacy.

In September, while serving as Ramara's Ward 2 councillor, she brought a motion asking Ontario and the federal government to work together to expand research, education and access to care, and to review funding policies for Lyme diagnostics and treatment. Council supported it unanimously.

Fisher credits real progress. Canada and Public Health Ontario have strengthened recognition, surveillance, prevention, diagnosis and treatment of acute Lyme. Pharmacists can now help with tick bites, a pathway she says creates another point of access for timely care, though with limits. Clinical guidance now says a typical rash needs no blood test confirmation, and blood tests no longer take precedence. "The current approach is more deeply developed than it was 10 years ago," she concedes. She wants the small window for testing addressed and, above all, a fuller framework of support for patients who do not recover as expected and live with persistent symptoms.