A little tick can lead to a big problem
Brain fog, mysterious infections, the doubt of others — one little tick can lead to big problems
Donna Lugar had a fantastic vacation to Scotland nearly 20 years ago. Soon after she returned home, though, it began. Lugar felt miserable.
“I came home from my trip to Scotland with a lot of infections,” said the Bedford, N.S. woman. “But (there was) no reason given, other than I had a lot of infections.”
She had strep throat, pneumonia, and a variety of other illnesses for the first time.
At one point, she had up to 45 symptoms.
“The (symptoms) affected every system in my body, pretty much,” said Lugar, who was experiencing vision, hearing, and digestive issues, as well as extreme fatigue and light and sound sensitivity.
“At my worst, I was in bed in a darkened room. At my best, I could function at about 60 per cent.”
Flash forward to 2011. She still had no explanation for her myriad of ailments, and still felt terrible. In desperation, she began googling her symptoms and stumbled upon Canlyme — the Canadian Lyme Disease Foundation — where she began to match up some of her symptoms to Lyme disease
“As a woman, many of my symptoms were considered female stuff due to getting older. At one point, I was sweating so bad, even doing minimal things, that rivulets of sweat were running down my body,” said Lugar.
“I was told it was peri-menopause. However, by the time I was truly in peri-menopause/ menopause, I realized my earlier symptoms were far more extreme.
“Nobody checked to see if I had entered menopause. They just assumed. It was a rollercoaster of emotions and there were times that I wondered if my mind was playing tricks on me.”
She pushed for more tests, and in the fall of 2011, she was officially diagnosed with Lyme disease.
“During this time, I was doing a lot of research and determined that’s what it was, so when he clinically diagnosed me, it was good to have some sort of diagnosis and treatment,” said Lugar.
Lyme disease – an illness caused by a bite from an infected tick — can be one of the hardest diseases to diagnose in Canada.
While she’s not sure where she contracted the disease, in hindsight, she suspects she was bitten by a tick during her Scottish vacation.
Lugar soon became involved with Canlyme and, in 2015, became Nova Scotia’s representative for the organization, which is working to help get Canadians with Lyme disease diagnosed by doctors and the help and treatment they need.
“I discovered very quickly there is a lot of cases of Lyme in Nova Scotia,” said Lugar. “I realized it took me a long time and a lot of work to find out what was wrong with me and that there were a lot of people struggling and they didn’t know why, so we needed someone to be able to speak to.”
‘IT WAS FRIGHTENING’
Musician Jean Hewson has a similar story.
In 2007, Hewson, who is from St. John’s, was working as a teacher at a folk music camp in Massachusetts when she noticed three bite marks on her leg. She started developing a rash that worsened, and she was also experiencing a cold, stiff, and sore neck.
“This is all classic symptoms of early infection,” said Hewson.
At the time, she was told it wasn’t Lyme disease, but still was concerned.
“I came back to Newfoundland, and I was haunted and worried that this could be Lyme disease and maybe this person is wrong,” said Hewson.
“For almost a decade, I had neurological symptoms, neuropathic pain in my feet, brain fog.”
For a musician, this was particularly scary.
“I had trouble with my memory and my ability to focus,” said Hewson. “I’m a singer, and I’ve always found it easy to memorize songs, but when I was sick, I just couldn’t commit the lyrics to memory. Sometimes, I would become disorientated and not know where I was or what I doing. It was frightening.”
She kept coming back to that mysterious rash and kept wondering if that was key to what was happening to her.
“I had so many problems and I kept thinking about Lyme disease because of those bites and how everything had started at that time.”
In 2016, she went looking online for answers. That’s when she, too, discovered Canlyme.
Hewson was finally diagnosed with Lyme disease in 2018, and since Newfoundland and Labrador did not have a Canlyme representative, in 2019, Hewson agreed to take on the role.
EARLY DIAGNOSIS KEY
Dave Reid of Paradise is another Atlantic Canadian who knows all too well the struggle of getting sick while not home and not knowing why.
It started with a trip to Ontario with his wife in September 2018.
“We stopped at a motel, and I took the dog out for a walk, and I was bit by different insects,” said Reid.
They continued on their road trip without a care in the world, but within a week of being bitten, Reid could feel what he thought was a cold coming on.
“We chalked that up to visiting someone who had a cold,” said Reid.
They decided to come back to Newfoundland sooner than planned because Reid continued to feel worse.
By the time they got back, Reid was so sick he could not even turn his neck.
“When driving, if I had to make a right-hand turn and had to look to the left to see if traffic was coming, I had to take my left hand and press on muscles on the right side so that I could turn my head enough to look and see if anybody was coming,” said Reid.
Reid eventually went to his family doctor. After some blood work, he was diagnosed with Lyme disease.
“I was fortunate that my wife had told me about this, and my doctor just willingly went on with it,” said Reid.
“I feel good about that because if he had turned around and said ‘no’ and kept going on, I don’t know what kind of damage could have been done long-term other than what was already done.”
Reid was one of the lucky ones, adds Lugar. While in medical school, doctors are not always trained on how to properly diagnose Lyme disease.
“With our medical professionals, there is a lack of education,” said Lugar. “They don’t receive a lot of training about it in medical school from what I am beginning to understand. They are not overly concerned about it, even in Nova Scotia, where we have so many cases. So, they haven’t gone out of their way to educate themselves more Lyme and tickborne diseases.”
That’s something she would like to see change — and quickly.
“What we really need now is for doctors to understand the three stages, what those symptoms can be, (and) start to acknowledge that some of those people they are seeing may be dealing with tick-borne diseases,” says Lugar.
“Doctors should be thinking if someone comes in with a certain amount of symptoms, that they think Lyme or tickborne diseases and not something else and leave that until the end.”
This is also something Reid thinks the general public is unaware.
“I don’t think people realize it’s here or what the symptoms are,” said Reid.
WHAT ARE THE WARNING SIGNS?
Canlyme recommends people watch for symptoms, such as headache, oversensitivity to light, decreased hearing, upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease), unexpected chills, and phantom smells. For a full list of symptoms, visit the Canlyme website.
Lugar wants people to be more aware of the symptoms and not just look for the wellpublicized bull’s eye rash, which is known as an Erythema migrans (EM) rash, as this can give a false sense of security.
“The bull’s-eye version that most people know is seen in only about 20 per cent of cases, yet it is referred to frequently as the Lyme rash. Other types of rashes are more common,” she explains. “A few years ago, I thought that the EM and bull’seye were one and the same. I now know that is incorrect.”
To prevent a tick bite, Canlyme recommends taking precautions, such as wearing long pants and long-sleeved shirts and ensuring they are lighter colours to make it easier to spot ticks. Walk in the middle of pathways or trails when possible and shower within two hours of returning home.