Sheri and Rory Mahood know well the hell that can follow a tick bite.
Both are suffering the debilitating effects of Lyme disease from tick bites they received on their own Sunnybrae property in the fall of 2009.
And, while their health is slowly improving, the couple still agonizes over what they say is a refusal by doctors to accept that Lyme disease is present, and a downright dismissal by ER doctors across the country who tell patients their symptoms are a product of their imagination.
The couple has formed the Lyme Disease Association of B.C., a group with board members from across the province, to advocate for fellow “Lymers” with a collectively louder voice.
But this attitude could be changing as a public health doctor is currently working with Interior Health on the issue of Lyme disease.
Through a freedom of information request, the Mahoods got a copy of a 2010 report, Chronic Lyme Disease in British Columbia – a Review of Strategic and Policy Issues, commissioned by the Provincial Health Services Authority and clearly marked, “Not for distribution.”
Prepared by Brian T. Schmidt, retired senior vice-president of the provincial health authority, the report laid out the nature of the disease and offered several recommendations.
Chief among them is improving diagnostic methods for chronic Lyme.
“Urgent attention should be given to ensuring B.C. patients receive the best possible diagnosis through adoption of more advanced technologies… This is the first and highest priority for B.C.”
Schmidt also calls for B.C. to continue national and local efforts to improve diagnosis and treatment of acute and chronic Lyme, and for doctors to develop a realistic and flexible course of treatment for individual patients.
“The province of B.C. should satisfy itself that a doctor may prescribe therapy to a patient that departs from prevailing medical practice unless it can be demonstrated that the therapy poses a greater risk to patient care or safety than does prevailing medical practice,” writes Schmidt, who notes that in the face of global warming and likely increase of tick-borne diseases in B.C., “improvements are needed in public education and support for active surveillance and precautions.”
This is welcome news to the Mahoods, who say doctors who agree to treat Lyme disease patients often run afoul of other doctors and their colleges of physicians and surgeons.
Schmidt also emphasizes the need for better education of doctors and calls for national mandatory reporting of Lyme disease.
Dr. Karin Goodison, the public health physician working with IH, says the health authority had three cases of Lyme disease in 2011 and four in 2012. By the end of June, there had been one case reported in IH in 2013.
While diagnosis is difficult, Goodison says 70 to 80 per cent of people with Lyme disease exhibit migrans erythema.
“This is the name of the rash that can start and extend out and have a clearing in the middle, and often comes with flu-like symptoms,” she says. “And this is where we want to pick it up, because this is where treatment is most effective.”
Goodison says Canada uses a two-tiered testing system approved by the US Centre For Disease Control, but adds, there is variability in the test depending on where it is done.
As well, Goodison notes diagnosis is challenging, testing can provide false positives and treatment carries its own serious risks that cannot be taken lightly.
“From the IH perspective, we do want our doctors to know the possibility of being bitten by a tick is present in IH, and if clinical symptoms that are consistent with Lyme disease are present they should be treated,” she says. “The key is to find it very early and treat while it’s amenable to treatment. The challenge lies in once the disease is chronic, months to years down the road, it is harder to diagnose and harder to treat.”
Goodison recommends an online visit to the BC Centre For Disease Control website – www.bccdc.ca, which provides a wealth of information about ticks.
If people are not satisfied with treatment they are receiving from regarding Lyme disease, Goodison suggests they request a referral to an internist who may be more knowledgeable about the disease. As well, she says doctors are welcome to use the health region’s medical health officers as a resource.
