QUESTION: After feeling really miserable for many months, my doctor finally concluded I had Lyme disease. He put me on antibiotics for a month and my symptoms went away. But now that I’ve stopped taking the antibiotics, I’m feeling horrible again. Is this typical for Lyme disease?
ANSWER: Lyme disease can be difficult to treat – especially when it is not identified right away.
It is caused by a bacterium called Borrelia burgdorferi, which is spread through the bites of tiny blood-sucking ticks that hide out in grassy meadows and wooded areas. The ticks originally pick up the bacteria from infected mice and deer.
Before the 1980s, Lyme disease was unknown in Canada and very few physicians have actually seen a case first-hand, says Dr. Gregory Taylor, Canada’s Chief Public Health Officer.
The early symptoms are flu-like and can include fatigue, fever, chills, headaches and muscle pain. “That could be virtually anything,” says Dr. Taylor.
Some patients will get a distinctive “bull’s-eye” rash around the site of the bite, but others do not.
The rather vague and varied symptoms add to the difficulty of making an accurate diagnosis. To make matters worse, the laboratory tests that check for the body’s production of antibodies to the infection can be difficult to interpret.
In 2009, 128 cases of Lyme disease were reported to the Public Health Agency of Canada. In 2015, cases rose to over 700. But Dr. Taylor readily acknowledges that “the real number is much higher” because many cases go undiagnosed and unreported.
That means a lot of patients aren’t getting timely treatment. They might suffer from debilitating pain and neurological disturbances that can be devastating, says Jim Wilson, a recovered patient and founder of the Canadian Lyme Disease Foundation, a non-profit group dedicated to improving the diagnosis and treatment of the ailment.
“They are losing their jobs, their homes, their life savings – everything,” says Mr. Wilson, who was sick for three years before a doctor identified his symptoms as Lyme disease.
Mr. Wilson says many of these patients feel abandoned by the Canadian health-care system. Some of them have sent their blood samples to U.S. labs that offer a broader range of Lyme disease tests than are currently available in Canada. The results of those tests have added more fuel to the burning controversy over how best to diagnose and treat the condition.
When the illness is detected early, most patients get better with a relatively short course of antibiotics, although some have lingering symptoms after their treatment.
The biggest problems seem to involve cases where the infection goes undiagnosed for a long time.
The delay in getting prompt treatment gives the organism time to infiltrate nerve cells, the brain, other organs, collagen and connective tissue, making it hard to purge from the body, according to Mr. Wilson. He says the organism is extremely tenacious and develops defence mechanisms that can make it hard to kill with antibiotics.
Mr. Wilson says he went through a series of antibiotic treatments over a period of three years before he finally recovered his health.
The medical community, however, has expressed concern about the lengthy antibiotic treatments that some patients are getting. “You want to be absolutely certain you have an accurate diagnosis because long-term antibiotic therapy can lead to severe diarrhea, Clostridium difficile (a gut infection) and it increases antimicrobial resistance” to antibiotic medications, says Dr. Taylor.
There is even a dispute over what to call some of the difficult-to-treat cases. Doctors will use the term “Post-Treatment Lyme Disease Syndrome” to describe patients who are fairly quickly diagnosed and treated, but still have lingering symptoms after an initial course of antibiotics.
Patient groups, on the other hand, use the term “chronic Lyme disease” to describe people who are sick for a long time before finally being diagnosed. Some in the medical community question whether these patients’ symptoms really result from Lyme disease or perhaps some other undiagnosed condition.
Despite the ongoing controversies, there are now plans to produce a unified approach to fight Lyme disease in Canada. This effort was set in motion by the passage of a private member’s bill introduced into Parliament by Green Party Leader Elizabeth May.
The Act calls for the development of a Federal Framework on Lyme Disease, with an emphasis on better surveillance of the disease, the creation of best-practice guidelines for diagnosis and treatment, as well as more public and physician education about the illness.
To get the ball rolling, federal health officials, patient groups and medical experts came together at a conference held in Ottawa a few weeks ago. The outcome of that conference showed there is a general agreement that the status quo is not good enough.
“There is a clear consensus that our diagnostics (lab tests) need to be improved,” says Dr. Taylor, who was one of the co-chairs of the conference. But what is a better option is far from clear. “The science is still evolving,” he adds.
He also noted that the conference was presented with some “credible” research suggesting that separate courses of antibiotics – rather than giving the drugs continuously over an extended period – could help beat back the illness in some patients. “Repeated antibiotics may be effective, but we just don’t know yet.”
Mr. Wilson, another conference co-chair, says “it may end up that a combination of tests is the best scenario” for diagnosing the condition. And he thinks that the appropriate treatment may vary from one patient to the next, with some requiring more antibiotic therapy than others.
Although a lot more work lies ahead, Mr. Wilson says “this is the beginning of some much needed dialogue between the patients, their experts and the government.”
And Dr. Taylor agrees “we need to do more to sort this out.”
After all, the number of Lyme disease cases is expected to grow significantly in coming years, in part, because climate change will likely increase the geographic range of the infection-spreading ticks in Canada.