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New Center Opens in Canada to Treat Chronic Lyme Disease, but CanLyme Withdraws Support.

complex chronic disease clinic in vancouver - dr alison bested

Dr. Alison Bested, head of the new Complex Chronic Disease Clinic in Vancouver.

More than 650 patients have already been referred to a new center in Vancouver, BC, Canada, that opened this week with the aim of treating complex cases involving suspected Chronic Lyme disease, fibromyalgia, chronic fatigue syndrome, and/or other issues. In a province where many doctors still mistakenly believe Lyme disease doesn’t exist, Alison Bested, the new head of the Complex Chronic Disease clinic, located in BC Women’s Hospital, aims to help those patients who have been given the run-around by a whole range of specialists unable to diagnosed the cause of their symptoms.

A soft opening of the clinic in March has resulted in around sixteen patients having already been seen at the clinic. This week, the clinic is officially open for business, with doctors across Canada able to refer patients there, whatever their gender. Patients with suspected or confirmed cases of fibromyalgia, chronic fatigue syndrome and Lyme disease will be form the major caseload for the clinic’s physicians.

Many patients with Lyme disease are initially misdiagnosed with conditions such as

  • Lupus
  • Chronic fatigue syndrome
  • Fibromyalgia
  • Multiple sclerosis
  • Depression

Patients with symptoms of heart palpitations, mental confusion, headaches, vertigo, chest pains, fatigue, muscle pains and tenderness, dizziness, nausea, and vision issues are often sent to cardiologists, neurologists, gastroenterologists, rheumatologists, orthopedic specialists, and infectious disease specialists for test after test. This process can, in itself, become a source of stress that exacerbates existing symptoms and even gives rise to new symptoms that further confuse diagnosis.

The Perils of a Lengthy Wait for Diagnosis

Chasing a Lyme disease diagnosis can, unfortunately, become an obsession that is fuelled by physician resistance to diagnose or even test. Ruling out Lyme disease may not be at the forefront of many doctors’ thinking when faced with a patient displaying symptoms of diseases thought more common and with which they have much more experience. Additionally, tests for Lyme disease are notoriously unreliable, and many patients have either not experienced or not noticed the Lyme disease rash that is clinically diagnostic for infection. Delays in diagnosing Lyme disease can leave patients vulnerable to permanent tissue damage and impairment as well as running the risk of being given treatments for suspected illnesses, such as steroids for MS that actually worsen the infection.

A Holistic Approach to Lyme Disease

Patients may take matters into their own hands and have blood drawn to send for testing at a lab such as IGeneX, despite concerns over false positives at many private laboratories that could be said to have a vested interest in ‘confirming’ patients’ suspicions of their struggle with Lyme disease. The hope is that this clinic can deal with complex cases that have thwarted the best efforts of overworked and underresourced physicians in specific fields of medicine. By approaching every patient holistically and working consistently to try to root out the cause of their symptoms, the clinic run by Dr. Alison Bested is still working on triaging those patients already referred.

Building a Sustainable Model for Lyme Disease Treatment

Over 100 patients of the 650 have been triaged at this point, but there is likely to be a long wait for other patients just being referred as it takes time to build a sustainable health model for this new kind of complex chronic disease clinic. Patients will be able to see a nurse practitioner, psychologist, physiotherapist, social worker and other medical experts as part of their assessment and treatment. Access to mental health experts is clearly indicated for patients who are often told that symptoms are all in their head, which, in itself, can cause emotional and psychological distress. Those with chronic illness are also better able to help themselves when they are given the opportunity to work with professionals to devise coping strategies for chronic pain and disability.

Support Withdrawn by CanLyme

Simply providing some validation for the pain and suffering these patients have endured and continue to endure is likely to benefit those who have spent years fighting a lonely battle against health professionals bereft of new information or the time to engage in current medical debate about Lyme disease. Despite these best efforts to care for patients who have fallen through the cracks in the healthcare system, the BC-based Canadian Lyme Disease Foundation (CanLyme) is no longer endorsing the clinic, citing “inadequate diagnostics and treatment for Lyme disease patients.” This is based on patients’ reports that standard antibiotic treatment models for Lyme disease are still being used at the clinic, although patients do also have access to naturopaths who may prescribe long-term antibiotic therapy if they hold a special licence.

Funding to Evaluate Lyme Tests

With the estimated number of cases of Lyme disease in the US having been revised ten-fold recently by the CDC, it doesn’t appear that the new clinic will be short on patients needing help. Bested, meanwhile, is looking into increased funding opportunities so that the new Vancouver-based Complex Chronic Disease Clinic is better able to meet patients needs by evaluating available Lyme disease tests.

{ 1 comment… add one }
  • Roma Slobodian-Odulak January 17, 2014, 4:00 pm

    Dear Dr. Bested,
    I was thrilled to see the focus you are putting on Lyme disease. After seeking out top pediatric rheumatologist here in NYC, my daughter Ruta who is 15, was misdiagnosed for 2 years, with fibromyalgia, by three top doctors.
    Ruta never thought this was right, I went on a hunt for a primary care physician who had experience with Lyme, he did not buy the fibro diagnosis and requested bloods be sent to IGenex.
    TOTAL positive panel for Lyme. He treated her with Doxy and two other antibiotics, no change.
    He arranged for an appointment with Dr. Richard Horowitz (who you probably know of) and we are now under his care. We have not seen great improvement yet, but are finally hopeful.
    Poor girl, her life went from being completely active, ballet 4 times a week and other such activities, to not even being able to handle walking up a flight of stairs without pain.
    We are hopeful though. Thanks to the knowledge and Dr. Horowitz resolute personality.
    Just a sharing that may perhaps help with other kids you are treating.


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