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Why Lyme disease can be so hard to diagnose and treat

Lymes Disease
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Written by Paul Taylor

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.

About the author

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Paul Taylor

Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families, relying heavily on medical and health experts. Email your questions to AskPaul@sunnybrook.ca
and follow me on Twitter @epaultaylor

11 Comments

  • Kudos to Paul Taylor for this well written and balanced response to this question about Lyme disease. As one who is still battling the disease, I know firsthand that it’s difficult to treat!

  • Thank you for a thoughtful and comprehensive article on the state of Lyme disease in Canada. The Federal conference inclusive of Lyme patients was a step in the right direction. Hopefully Canada will continue to appeal to international experts who are much farther ahead in terms of research, testing and more importantly…. that there is much more that we need to know to handle this epidemic in a timely and dignified way in Canada. Most notably.. Nobel prize for medicine..Dr Montagnier, from France, Dr. Zhang with John Hopkins and Dr. Eva Sapi from the University of New Haven all present more comprehensive views of persistent infections, immune dysregulation and the variety of coinfections commonly transmitted through to ticks that affect testing and treatment. I truly hope Sunnybrook does not follow the lead of the Complex Chronic Disease Clinic in British Columbia. It is a disgrace to the needs of Lyme patients and has been nothing more than a Public Relations tactic following the forced release of the BC Health Authority Schmidt report. Patients deserve more comprehensive testing, treatments and financial support as they navigate this terrible disease. Paul Taylor is commended for continuing the respectful and needed dialogue on Lyme disease in Canada.

  • Thank you for the well written article. As someone who has been ill for the better part of almost 3 decades. Diagnosed with 23 illnesses, seen over 60 doctors with more than 55 symptoms…i only found out last year that I have ‘chronic’ lyme disease. My GP missed the telltale large EM rash on my legs which was dismissed as black fly bites in the 1980s as i believe many of us were. I have been diagnosed with everything from radiculopathy, to Bells palsy, Guillain Barre, pneumonia, thyroid cancer, relapsing paralysis , every form of arthritis you can have and now Lyme….I am eternally grateful to a wonderful Dr. at your hospital for picking up on this!!! It IS easy to catch, HARD to diagnose and NOT easy to treat….especially 3 decades later. More doctors need to be trained and trained properly, and the testing needs to be updated with the many strains of Borrelia and updated to include bands that have been removed for undisclosed reasons.

  • I also want to thank you for this article – from another “lymie” who went 5 years without diagnosis or treatment. After 5 years of being too sick to work, I was able to return after just over 1 year of treatment with abx (in the U.S.). Thanks again for writing this – we need hope that things are changing, and this is definitely hope worthy!

  • I remember so many years ago when I was a patient, along with my daughters, of Dr. Jozef Krop in Mississauga–for years. The health I have today I can thank him for. He was diagnosing through USA testing and treating lymes disease with intravenous antibiotics. I was in the back room of his office receiving a different treatment but would listen to the lymes patients and what they had been through until they found Dr. Krop. This doctor was exceptional in medicine and with his patients. He wrote a book on lymes disease. Last year I loaned it to a girlfriend who has been suffering for years from chronic lymes disease. I watched as the College of Physicians and Surgeons would sue him over and over for unacceptable practices. So many of us had been 10-15 years with specialists with no results until we were introduced to Dr. Krop. Now I see ‘lymes disease’ education everywhere. Once again, the College of Physicians were wrong and were relentless, going after this man for his medical license. Finally Dr. Krop gave up his MD designation–a great loss to our country. All that mattered to Dr. Krop was that his patients continued to get well. It was sad to watch what that poor man experienced from some of his peers and the College while his patients supported him and other professionals supported him. Kudos to Dr. Krop for being a champion of change for so many years.

    • I’ve only heard positive stories of support, compassion and recovery from Dr. Krop. He should be applauded for his willingness to advocate for patients and for following the Hippocratic oath. It is despicable what he had to endure from the medical establishment and sad he is only one of many who are no longer practicing due to archaic, close-minded mentality.

      It will be very interesting to see how things change in this country (and globally) with respect to education, testing, diagnosis and treatment. It can’t come soon enough.

  • I was bitten by a tick in July of 1989 while in Lawrence, Massachusetts, for less than 24 hours. I was ignored and denied medical help by Ontario doctors for 19 years. It was not until 2008 that a Practitioner of Traditional Chinese Medicine, not an Ontario doctor, figured out it was Lyme. The Ministry of Health and Long-Term Care, the office Ontario Premier Kathleen Wynne, and the College of Physicians and Surgeons of Ontario are all responsible for the fact that Lyme disease continues to be downplayed and ignored by so many Ontario doctors today. When presented with overwhelming evidence 7 years ago, had former Health Minister, Deb Matthews, done her job, thousands of Ontarians would not be chronically ill today. Too many Ontario doctors continue to bury their heads in the sand in order to prevent any disciplinary action from the College of Physicians and Surgeons. We suffer and die as a result an ignorant College. In 2016, the problem with Lyme disease continues to go straight to the office of Premier Kathleen Wynne.

  • Thank you for this timely article on Lyme Disease. However I don’t think the original question was adequately addressed. That is – What should a person do who
    1) HAS been positively diagnosed with Lyme Disease and who
    2) HAS received antibiotic treatment – the treatment protocol of a few weeks as deemed appropriate by the CDC –
    when symptoms re-emerge or never completely go away???

    How can we be sure that 2-3 weeks of antibiotic treatment effectively eradicates Lyme?
    Are there accessible tests for other tick borne coinfections which might accompany Lyme here in Canada and may be causing these longer-lasting symptoms?
    Is there an infectious diseases doctor at Sunnybrook who is accepting referrals from patients who have been diagnosed with Lyme here in Ontario?
    Looking forward to hearing your answers.
    Thanks Paul!

    • I am sorry I can’t provide you with exact answers to your question. As I am sure you are aware, there is a great deal of debate about how best to diagnose and treat this condition. I would be misleading you if i left the impression that I know better than others. So, overall, I attempted to explain what is being done to settle these issues in Canada. And, hopefully, the federal framework on Lyme disease with provide the clarity you are seeking. A report is expected to be delivered to Parliament within a year. In regards to Sunnybrook – Sunnybrook provides specialized care for a number of different medical conditions – but Lyme disease isn’t one of them. You may want to talk to your primary health care provider for guidance.

  • thank you Sunnybrook for communicating more up to date information that we usually see on Lyme Disease. I suffered 6 years before being properly diagnosed and treated, and suffer permanent disability. My 12 year old daughter also has Lyme, as well as my niece and my dog. Disease carrying ticks are spreading very quickly.