Mount Allison researchers want to hear from Lyme disease patients

Mount Allison researchers are reaching out to Lyme disease patients, their families and their caregivers as they set their research priorities.

A discussion about the disease will be held Wednesday afternoon, said biologist and Lyme disease researcher, Dr. Vett Lloyd.

"Asking patients to assess research directions seems like an obvious way to ensure that the research is relevant and addresses patient, rather than researcher, needs," Lloyd said in a news release.

"But this obvious step of community engagement is rare in medical research and is a first for Lyme disease research in Canada."

• More national round tables planned for Lyme disease awareness

• Lyme disease under-reported in New Brunswick say advocates for better care

Lloyd said Lyme is a rapidly expanding disease in Canada caused by the bite of an infected tick.

Mount Allison recently established a Lyme disease research centre with the support of the Canadian Lyme Disease Foundation. The virtual roundtable discussion on Wednesday is the centre's first initiative.

Moncton woman fighting for treatment

Natasha Joy Snowdon, age 30, of Moncton believes she has been suffering from Lyme disease for the past 11 years.

In 2005 she went to the hospital with an insect bite and rash on her upper back. Snowdon says she didn't give it another thought until she started having pain and swelling in her joints, migraine headaches and significant weight loss.

"I've seen hundreds of doctors and had so many tests and they kept saying, 'All of your tests are coming back normal.' I was even diagnosed at one point with an eating disorder," Snowdon told Information Morning Moncton. 

A blood test in 2012 came back negative for Lyme disease but Snowdon believes that test was inaccurate because of the length of time between her infection and the test.

Meanwhile she estimates she's been in hospital at least 50 times in the past 11 years, and seen dozens of doctors and specialists.

Earlier this year a blood test at a California lab came back positive for Lyme disease, which was a relief for Snowdon and her family.

"Getting this diagnosis I think helped them to be able to process, 'Ok, there's something we can try to fight, there's something maybe we can work towards to help her.'"

Snowdon has been unable to find a doctor in New Brunswick who can confirm her diagnosis so she can receive the high dose antibiotics she believes will help her.

Now her family is trying to raise $40,000 so she can travel to the United States for long–term antibiotic treatment.

Dr. Ed Schollenberg, the registrar of the College of Physicians and Surgeons of New Brunswick, said he is unaware of any confirmed cases of Lyme disease in the province that have gone untreated.