Woman gets Lyme disease diagnosis after 13-year battle, as number of cases rises

Amanda Kenny says she lived a regular life 13 years ago.

Kenny, from the Charlotte County community of Lepreau, was studying esthetics at Majestany Institute and taking care of her daughter.

"Everything was great. I was doing normal 24-year-old things, and then all of a sudden I woke up one morning and that was gone."

Kenny, now 37 and a mother of two, has had more than a decade-long struggle with Lyme disease, a diagnosis she only received last month.

"The doctor … said to me, 'I have never seen anyone or treated anyone with such a severe case of Lyme disease as you have.' He did tell me that he didn't believe he could help me."

CBC News was not able to speak to Kenny's doctor.

Her battle with the disease began after a camping trip in 2007. A week after the trip, she noticed her right knee was swollen. She thought nothing of it, but the next morning she woke up with the worst flu of her life.

Her friend had to carry her into her doctor's office because she was so sick. From there, she had "extensive" testing. 

"Nothing came back from that, so I was put on steroids because they thought I had rheumatoid arthritis. That didn't work,  though testing kept coming back everything was clear, everything was clear."

Half test negative

What Kenny didn't know at the time was that roughly 50 per cent of people tested for Lyme disease test negative the first time.

"That's a pretty pretty big area of people that are not being properly diagnosed because of the testing," Kenny said. 

Dr. Duncan Webster, an infectious diseases consultant and microbiologist at the Saint John Regional Hospital, said the test for Lyme disease is based on serology, which looks for antibodies in the bloodstream. 

"It takes time for the body to develop these antibodies, so pretty much across the board after an immediate exposure to something if you test early the test will be negative," Webster said. 

Lyme disease testing can show up negative in two cases, he said: if you test earlier than six to eight weeks after exposure or if you are on antibiotic medication. 

"If you're treated early on you can blunt that immune response," Webster said. 

"In doing that, you may have false negative serology down the road as well."

Initial screening tests for Lyme disease are done at some hospitals in New Brunswick, but testing to confirm Lyme disease must be completed at a national lab in Winnipeg. 

Labs outside Canada tend to have a lower threshold for what's classified as a positive test for Lyme disease. 

Lyme disease on the rise

The Public Health Agency of Canada reported 2,025 cases of Lyme disease in 2017, up from 992 in 2016 and only 144 in 2009.

In 2019 there were 35 laboratory confirmed cases of Lyme disease in New Brunswick, the Department of Health said in an emailed statement.

"The expanding population of blacklegged ticks in the province has resulted in an increased number of Lyme disease cases in New Brunswick," said the statement from Dr. Jennifer Russell, New Brunswick's chief medical officer of health. 

With shorter winters and warmer temperatures becoming the norm, some doctors are warning Lyme could spread at faster rates in New Brunswick.

"Thirty to 40 years ago you wouldn't find ticks in Millidgeville," Webster said. 

"There are ticks there now." 

The rising number of ticks can be largely attributed to climate change, Webster said. 

'No one should have to go through this'

Kenny went to the emergency room 10 times with heart issues before her diagnosis, she said, but doctors sent her home, telling her she had a mental illness or had irritable bowel syndrome.

Kenny gets migraines and pains in her face causing burning and tingling sensations and numbness. She's also lost 55 pounds over the last three years. 

The disease affected her so severely she became bedridden and had to give up her business, Under the Sea Aquatics in Grand Bay-Westfield.

"I could hardly take care of myself," Kenny said. 

"I had Sobeys bags and Sobeys bags full of medications that I was taking that never worked."

Kenny said she doesn't think doctors are receiving enough education about Lyme disease and the co-infections it can cause. 

"I did all this work on my own to get this help. Nobody helped me get to this place and no one should have to go through this for all this time," Kenny said. 

"I am not the only one out there suffering like this."

Webster agrees there should be more education but said that doctors are slowly becoming more knowledgeable. 

"It's a topic that we need to keep on our radar, to continue to talk about." 

Webster said there are also ways people can protect themselves from ticks, such as keeping livestock around to ward off the pests. 

Doxycycline, an antibiotic, can also be used after exposure to a tick to prevent the onset of Lyme disease. 

Feeling she can't get help in the province, Kenny said she plans to seek treatment at a special clinic in Mexico, called Sanoviv Medical Institute. Treatment costs $22,900 US for the first two weeks and then $9,500 US for each week after. She will be there for four weeks.