Patient advocate says more awareness needed for Lyme disease

Lyme disease patient advocate dedicated to raising awareness

Donna Lugar has a growing list of testimonials from Nova Scotians deeply impacted by Lyme disease.

There are commonalities in many of the heartbreaking stories that are shared with Lugar, the Nova Scotia representative for the Canadian Lyme Disease Foundation (CanLyme).

“A lot of the people that contact me have a number of symptoms and they’ve never really received a diagnosis – nothing that covered all of their symptoms,” she said in a recent phone interview.

Lugar frequently hears from individuals struggling to find a Nova Scotia-based practicing physician prepared to provide long-term treatment for persistent symptoms believed to be linked to Lyme.

“When you have to tell people to go to the United States for treatment, that’s pretty sad. We need doctors that understand and can diagnose - and treat - all stages of Lyme disease, not just the first stage,” she said, adding that she has noted an increased awareness of the signs and symptoms in the early stages of an infection.

“Over the last couple of years there have been improvements. There are more doctors that certainly know the basics.”

Too many unknowns

The Bedford resident fears there are some misconceptions that have led to a general lack of awareness regarding Lyme disease and other tick-borne infections.

“They are not rare, hard to get, and easy to diagnose, as some would have you believe,” she said.

Lugar’s own battle with Lyme disease is not unlike many of the tales she’s heard from fellow Lyme patients she’s met through support groups, seminars and at advocacy events.

After more than 10 years of being misdiagnosed and experiencing a wide array of symptoms, Lugar said she followed through on a recommendation from CanLyme and reached out to Dr. Ben Boucher in Port Hawkesbury.

She started receiving treatments consisting of an herbal protocol and antibiotics following a clinical diagnosis from Boucher in late 2011.

“He gave me time,” she said, noting that policies stating that patients must choose only one to two symptoms to discuss with a doctor per visit make it harder to detect ailments related to multi-systemic illnesses.

“We need to look at the way doctors are being paid in this province because… some patients need longer than five minutes.”

Lugar said her general practitioner acknowledged that there were noteworthy improvements by 2012, but she was unable to pick up where Boucher left off once he closed his practice in 2013.

“When he closed his practice… she couldn’t continue on with the treatment because it wasn’t a valid diagnosis because I didn’t have a positive ELISA and Western blot,” said Lugar, who added that it’s documented that this method of testing can yield false results.

‘Controversial issue’

The medical community in Canada is divided on the subject of late-stage Lyme. There are two main camps: those endorsing guidelines supporting long-term antibiotic use and those opposing this approach on the basis that there is not enough evidence to support that form of treatment.

“It’s a controversial issue,” said Lugar.

She believes doctors in Nova Scotia should be encouraged to review both the Infectious Disease Society of America (IDSA) and International Lyme & Associated Diseases Society (ILADS) guidelines – not just the IDSA standards - and use their own judgment to make a clinical call based on what will work best for each patient.

“Treat until the symptoms are gone, rather than just follow a certain standard,” she said.

A Government of Canada document entitled “Lyme Disease in Canada – A Federal Framework” notes that the Association of Medical Microbiology and Infectious Diseases Canada (AMMI Canada) has endorsed the use of IDSA guidelines to date.

“The treatment recommendations in the ILADS guideline are different from those in the IDSA, particularly with regards to antibiotic use. There remain evidence gaps, which can be informed through further research on treatment options. Emerging evidence will be closely monitored and shared with patients, front-line health professionals, and other relevant stakeholders,” the document reads.

The federal framework acknowledges that Lyme disease is “an emerging infectious disease in many parts of Canada” that requires further research.

In the spring, $4 million in federal funding was announced for the establishment of a Lyme disease research network.

In the Lymelight

Lugar continues to publically voice her concerns in hopes that ongoing advocacy efforts will eventually inspire action that will result in a widespread awareness of Lyme disease and other tick-borne illnesses.

“Are we losing people to some of these things that could actually have been treated with a short course of antibiotics if caught early?”

Lugar does not claim to know all of the answers but she knows what’s not working for her – and others like her.

“I’ve been treating symptoms rather than treating the actual illness,” she said, noting that she can no longer work as a result of her deteriorating health.

She urges Nova Scotians to educate themselves on the best ways to prevent tick bites and the steps to take if a bite occurs.

The Nova Scotia Tick Borne Diseases Response Plan lists Human Granulocytic Anaplamosis (HGA), Human Babesiosis, Borrelia miyamotoi and Powassan virus as examples of other illnesses that can be transmitted through a blacklegged tick.

Lugar wouldn’t wish Lyme disease on her worst enemy.

“It’s such a crazy, crazy illness.”

For more information regarding Lyme disease and ticks, visit Lugar’s blog at https:// shiningthelymelight. com/ or https://canlyme.com/.