Research aimed at answering questions that loom
“To get forward motion on improving these people’s lives we do need to get patients together, we do need to get treatments for them that might work and look at them in a rational fashion so that 10 years from now we’re not sitting where we are right now,” Gregson said. “We can’t do it without the patients.
“What do we do about patients who have persistent symptoms and we don’t have good treatments for? One of the things we’re advocating for is the establishment of clinics that can look at these suffering people in a scientifically valid format and try to identify what’s going on, why they’re having ongoing symptoms and what we can do to make them feel better.”
Last month, the Canadian Institutes of Health Research issued a call for research on Lyme, part of the federal government’s newly announced $4-million strategy.
Research is aimed at answering the questions that still loom, such as why some infected people don’t get sick while others develop agonizing and hard-to-treat symptoms and whether lab tests can be developed to detect the earliest stages of Lyme infection when current tests may only work weeks later.
Ontario’s health minister, Dr. Eric Hoskins, for example, pointed to that diagnostic gap when he wrote to the province’s doctors last year, stressing that they should use their “clinical judgment” to diagnose and treat Lyme based on a patient’s symptoms instead of waiting for lab tests. Those symptoms, he noted, include fever, chills, headache, rash, fatigue, muscle and joint aches and problems with heartbeat, breathing, balance and shortterm memory.
One of those suffering patients is Kristy Giles, a former triathlete whose health is finally starting to improve four years after she found ticks latched to her back during a solo 300-kilometre hike along the Rideau Trail. The 43-year-old Almonte woman soon had “textbook” Lyme symptoms but was assured she didn’t have the disease because tests were negative.
Over months, the symptoms began to mount — she’d feel like she was having a heart attack, and suffered exhaustion and memory loss. Soon she was unable to work. Yet doctors blamed stress or overtraining, even though Giles could no longer even run. One accused her of wanting to have Lyme.
“I got to the point where I could barely walk when I got out of bed in the morning,” she said. “My legs just wouldn’t support me.”
With time and treatment she’s had to seek out on her own, Giles’s health is slowly improving. As an advocate, she’s been fielding a handful of calls a week from people who find ticks on themselves but are confused by advice from doctors that can vary widely.