Former Lunenburg councillor misdiagnosed with Lyme disease now told he has ALS

One year ago Brian Davis resigned from Lunenburg town council after being diagnosed with Lyme disease. But after four months of unsuccessful treatment, he was diagnosed instead with ALS.

Neurologist says ALS symptoms often confused with other illnesses, including Lyme disease or arthritis

Brian Davis resigned a town councillor in Lunenburg, N.S., after he was diagnosed with Lyme disease in May 2017. (CBC)

A former town councillor on Nova Scotia's South Shore says he was mistakenly diagnosed with Lyme disease.

Brian Davis, who stepped down from Lunenburg town council last May, has since been diagnosed with ALS, a progressive neurodegenerative disease.

Davis said his symptoms first showed up a few years ago while he was training for a marathon. 

"I had some problems with my right foot, where it lost a lot of muscle," he said.

"The [doctors] said, without another diagnosis, there's a good possibility it might be Lyme disease."

Davis went on a round of antibiotics for four months.

"Absolutely nothing was happening to correct it and it was still progressing," he said.

A trip to a neurologist in Halifax led to a new diagnosis in October.

ALS, Lyme disease have similar symptoms

Amyotrophic lateral sclerosis is difficult to diagnose, especially at the onset, because symptoms can be so similar to other illnesses, according to Dr. Timothy Benstead, the neurologist who correctly diagnosed Davis with ALS.

"The big problem is that ALS does not present with all of the manifestations right away," Benstead said.

"It often presents with weakness in a foot, or an ankle, or a hand, or another part of the body. It always starts small and then builds over time. When it starts in a particular region, it can often look like something else."

Dr. Timothy Benstead says ALS is difficult to diagnosis. He says patients are often diagnosed with another illness or disease at the onset of symptoms. He's had several patients that were told they had Lyme disease, but eventually were diagnosed with ALS. (Pat Callaghan/CBC)

Benstead said he's had other patients that were also initially diagnosed with Lyme disease, before their symptoms progressed to show they clearly had ALS.

"The confusion with Lyme disease has happened before, certainly. I've had patients who are diagnosed with arthritis in an area, or a disc problem in their back."

Benstead said adding to the difficulty of diagnosis is that ALS is very rare, with only about 20 new cases in the province each year.

Despite his ALS diagnosis, Lunenburg's Brian Davis managed to walk all five kilometres at the town's recent ALS walk. (Submitted by Peggy Falkenham)

"Because it's a relatively uncommon disease, there aren't that many people around that have very much experience with ALS," he said.

"The diagnosis is almost never made by a family physician. There are many family physicians who would never have had a patient with ALS in their practice."

As for Davis, he said he's happy to know what disease he has, so he can focus on fighting it.

"That's a big part of the battle. Once you find out what it is, then you can start concentrating on that."

Brian Davis and other participants in the Lunenburg walk for ALS. (Submitted by Brian Davis)

Just last weekend, Davis hit the pavement again, for a slightly shorter distance, this time as part of the Lunenburg ALS walk, where he did all five kilometres with the help of a walker.

"For me, it's just a challenge. I ran the Boston Marathon," he said.

"Training for marathons — there's a challenge for you."

About the Author

Marina von Stackelberg

Journalist

Marina von Stackelberg is a CBC journalist based in Winnipeg. She previously worked for CBC in Halifax and Sudbury. Connect with her @CBCMarina or marina.von.stackelberg@cbc.ca