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Support withdrawn for Lyme clinic
High hopes have turned to frustration and disappointment for B.C. “Lymies.”
B.C. residents who suffer from Lyme disease were thrilled when the province announced funding for a complex chronic disease clinic in 2010.
But the Canadian Lyme Disease Foundation (CanLyme) has withdrawn their support for the clinic that is operated by the BC Centre for Disease Control (BCCDC) – something clinic officials dispute.
CanLyme president Jim Wilson says foundation members were shocked to discover that rather than following recommendations made in a 2009 provincially commissioned report on the disease, treatment at the clinic would be restricted to the same “inadequate guideline” that prompted its establishment in the first place.
The report prepared by Brian T. Schmidt, retired senior vice-president of the provincial health authority, posted an urgent call for improved diagnostic methods for chronic Lyme. In the report never released to the public, Schmidt also calls for B.C. to continue 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.
But Wilson questions the province’s move to give the BCCDC funding and control of the clinic when, he says, the doctor in charge is trying to reduce the use of antibiotics, given the only known cure for Lyme disease is through an intensive course of antibiotics.
As well, Wilson charges that the BCCDC tests for only one strain of one species.
“Lyme Borreliosis is an infection caused by bacteria acquired from the bite of various species of ticks,” he says. “In B.C., there are several strains and species of the genus Borrelia, however, only the Borrelia Burgdorferi, strain 831, is used as the foundation of the current government Lyme disease test for humans.”
Wilson says the clinic offers exercise pacing, mindful meditation and cognitive behavioural therapy, none of which has been shown to be effective in treating chronic Lyme disease.
“I absolutely agree with CanLyme’s decision to withdraw their endorsement. I do not need a clinic to offer me tips on how to meditate or how to implement cognitive behavioural therapy – I can do this on my own,” says local resident Sheri Mahood. “What us Lyme patients need is the right to long-term antibiotics… chemotherapy is dangerous too, as is most medical treatment, so why not let us decide if we want to take the risk?”
Mahood says she rarely took any drug before contracting Lyme disease but would rather deal with the side effects of antibiotics than be completely incapacitated by Lyme disease.
Dr. Bonnie Henry, medical director of communicable disease control and acting provincial health officer, says officials are very disappointed by CanLyme’s pull-out.
“The clinic has spent a lot of time engaging with stakeholders to make sure protocols meet the needs of these people suffering from debilitating illness,” she says.
“We’re seeing a mix of patients and I think it’s a bit shortsighted for them to focus only on antibiotics.”
Henry says one of the features of the clinic is being open to the fact there may be underlying issues such as why some people’s immune systems are more sensitive, or whether there is some new infection that has yet to be found.
“Unfortunately, there is misinformation,” she says. “We’ve done a lot of work in B.C. about what species actually cause Borreliosis and testing is broad and covers all the ones that can cause Lyme.”
She notes the centre can test people who might come in contact with other species in Europe or wherever.
While she believes the risk for getting Borreliosis-infected ticks in B.C. is a lot lower than on the East Coast, Henry “absolutely believes” Lyme disease is a very real risk here. But, she points out, Lyme is preventable and the key is to prevent the bites or at least get them in the early stages.
“Treatment is really important, get a referral (to the clinic) from your doctor,” she says. “Catch it early and most people do extremely well. Late manifestations – that’s where there is a lot of problems.”
Henry refutes Wilson’s claim, noting research is ongoing and a lot of time is spent looking at what evidence there is around a variety of different treatments – and it’s individualized according to each patient. Henry denies antibiotics are never used but cautions there can be serious side effects. The number-one trigger for C-difficile is antibiotic use, she says.