A local Lyme awareness advocacy group is calling on the province to do more to educate Nova Scotians about Lyme disease and offer treatment to those suffering from chronic Lyme.
Donna Lugar is with the Nova Scotia Lyme Advocacy Group. In February 2022, the group did a presentation to the PC Caucus about Lyme disease that included three asks: a task force, a clinic, and more education on Lyme disease.
Now a year later, Lugar said the group hasn’t heard anything in response to that presentation, so they wrote an open letter hoping to share more awareness about Lyme.
“The PC government has been vocal about Lyme for years and they said they were going to do something,” Lugar said in an interview. “We’re not totally unrealistic here. We realize with COVID and what they’re doing with health care right now … but I think that if somebody took a cost associated with Lyme and tick-borne diseases that would be a huge help to deal with the health care system as it is.”
Lugar said the open letter also went out to Nova Scotian MLAs, senators, and local news outlets.
The three asks the group mentioned in its 2022 presentation and open letter include:
- Lyme Clinic: There is an urgent need for a clinic in Nova Scotia dedicated to complex Lyme and Tick-borne diseases, similar to the Tick Collaborative Care Service in Manitoba, which Manitoba Health opened to reduce the costs of misdiagnosis and delayed diagnosis.
- Education: Health care providers need accurate, up-to-date, education on TBDs so they can recognize and treat all stages of Lyme (acute, early, and late disseminated) and other TBDs.
- Non-Partisan Lyme Disease Task Force: Nova Scotia needs to form a Non-Partisan Lyme Disease Task Force that includes representation by those with lived experience of TBDs.
Lugar has been in this situation before. She and the NS Lyme Advocacy Group have met with previous premiers, including Darrell Dexter and Stephen McNeil, all before they were elected, and all of whom had Lyme disease on their radars.
“As soon as they become the party in power, it seems like they shut down and they stop doing and talking,” Lugar said.
Lugar said her own MLA, Bedford’s Kelly Regan, was very vocal about trying to get support for Lyme awareness and treatment. Lugar said Regan was even known as “the tick lady” at the legislature.
“She was constantly harping on doing more and then the Liberals got in and that was really the last time she said anything about Lyme and tick-borne diseases,” Lugar said.
As for the clinic, Lugar said Manitoba has established a dedicated Lyme clinic, while Quebec has clinics, as well. Lugar said the models are certainly available to check out.
“We had mentioned the Manitoba clinic as something to look at, but more from the fact that Manitoba opened that clinic after doing a review of the costs associated with undiagnosed and misdiagnosed Lyme disease,” Lugar said. “It was cheaper to deal with more effectively than having [patients] flounder around in the health care system going to multiple specialists for multiple tests. If [the province] actually took a good look at what it’s costing Nova Scotia, it would be a heck of a lot cheaper to open a clinic with people who know what they’re talking about.”
‘I didn’t take Lyme disease seriously at all’
Brian Milligan lives in Greenwood and said he’s suffered from chronic Lyme for years.
“I’ve probably seen 30 doctors and spent hundreds of hours in ERs, thousands of hours travelled, and I’m still as isolated as a boat lost out on the ocean because of this disease,” Milligan said.
Milligan, who was an avid outdoorsman, remembers many times being covered by ticks after being outdoors. He recalled one time in particular about 10 years ago when he discovered what he first thought was a skin tag on the back of his knee caused by a shin guard from playing hockey. One day when he was in the gym, Milligan said he noticed the spot again and pulled on it.
“It was a tick and it had been there for a few days,” Milligan said. “I just flushed it down the toilet and didn’t think about it. I didn’t take Lyme disease seriously at all.”
At the time, Milligan was serving in the Royal Canadian Air Force, and he started experiencing pain in his joints and excessive fatigue. He went to see a doctor, but tests couldn’t find an issue.
Related: A plague of ticks, tick-borne diseases, and poli-ticks. Part 1: Tick populations in Nova Scotia are exploding largely because of climate change and the province is Canada’s “hot spot” for Lyme disease. So, how is the province monitoring and managing tick-borne diseases and health risks?
Related: A plague of ticks, tick-borne diseases, and poli-ticks Part 2: What can be done to better manage and minimize the risks of tick-borne diseases in Nova Scotia?
But in May 2015, Milligan said he had a “seminal moment” when he started experiencing flu-like symptoms.
“I was pushing through it as you do,” he said. “I looked one of the people I worked with and said, ‘I don’t know if I will make it all day.’”
Milligan said he then dropped to the floor and had a seizure. He was taken to the hospital by ambulance and more tests were done but he said nothing was found. Milligan said a doctor suggested it might be stress, but Milligan said he had dealt with more stress than that during his career.
As that 2015 went on, Milligan said his condition continued to deteriorate and he developed more symptoms, including sensitivity to light and poor digestion.
The following year, Milligan said he was discharged from the air force after suffering a heart attack. He was 50. That discharge meant Milligan lost access to a doctor, too.
Over the last several years, Milligan said he’s gone to emergency departments and specialists trying to get help. He’s experienced more seizures, convulsions, and at one point a loss of neurological function. He said he spent several days at the QEII hospital to rule out multiple sclerosis. He’s been told he had reactive arthritis and psychological issues.
“I never get to choose my day. I can’t get up and make plans because I’ll be too disappointed,” Milligan said. “On a good day I might ride my bike a couple of kilometres. I used to tour most of Canada or a good chunk of it. Even after I contracted Lyme, after my heart attack, I cycled across Newfoundland. It hurt like crazy and I didn’t know what was wrong with me. I didn’t know I had Lyme disease. I just wanted to feel like I had control again. I did it but it hurt way too much. I couldn’t attempt that now.”
In January 2020, he went to see Dr. Richard Dubocq, a family physician in Maine, who was once treating people in New Brunswick with Lyme disease. Milligan said Dubocq told him that based on his medical records, he had Lyme.
Milligan eventually connected with Lugar and the NS Lyme Advocacy Group. He was part of the group when they met with Houston before he was elected to talk about Lyme.
“We didn’t expect him to fix it in one fell swoop, but we didn’t expect to be let down like we were either,” Milligan said of the meeting with Houston.
Milligan said he’d like the province to make some moves on the three asks from the NS Lyme Advocacy Group.
“Those have been the same asks we’ve had all along,” Milligan said. “Those are the same things we all wanted. We cannot get traction with the health care system. That’s the big problem.
Milligan said he also discovered a passion for songwriting and has used that to write songs about the health care system and living with Lyme disease.
“It was cathartic, really,” Milligan said. “That’s why I write; to get the thoughts out. It’s very liberating.”
He’s also working on his own activism to raise awareness about Lyme disease.
Still, Milligan said he’s suffering. Last year, he applied for the Medical Assistance in Dying Program and was accepted, not because he has Lyme, but because he has chronic fatigue.
“I couldn’t scream any louder for help,” Milligan said. “I’ve said to every doctor, ‘Do you think I want to die?’ I said no, but this is me saying I don’t want to live like this anymore. All I’m asking is to try to see if you can help instead of turning us away.”
In an update Milligan sent in March, he wrote that the decision regarding his application for MAID was reversed.
‘Chronic Lyme is real’
Vett Lloyd is a researcher and professor of biology at Mount Allison University in Sackville, NB. She’s also the founder of the Lloyd Tick Lab where people can submit ticks for testing. The lab also does research on ticks, tick-vectored diseases in wildlife, and Lyme disease in humans.
Lloyd said the response to Lyme disease and treatment is “complex,” and adds the health care system is much better at treating acute Lyme, when disease is diagnosed early.
“I think that there’s starting to be a better response to acute Lyme, so the early stages of when someone finds a tick or sees the diagnostic [bull’s eye] rash, there is a response to that. Is it adequate? It’s not perfect, certainly not, but there’s starting to be awareness that it’s an issue. As it should be because Nova Scotia has the highest per capita of Lyme disease because there are a lot of ticks and not quite as many people. Ontario probably wins for more ticks, but they have more people, too.”
But, she said, the situation is much different for those people like Milligan who have chronic Lyme.
“Chronic Lyme is real, it’s a thing, and people with chronic Lyme disease are very ill and certainly deserving of treatment and I’m sure would prefer to be treated without seeing so many physicians,” Lloyd said. “Given the pressures on our health care system, that isn’t efficient use of our medical time either.”
Lloyd said given how long ticks have been around and how diagnosing cases in the early stages has lagged, there’s a “backlog of people” who have developed late-stage Lyme.
“So, it would be a great idea if there were a response to that,” Lloyd said.
Lloyd said the problem is that the health care system is set up to deal with acute issues. People with chronic conditions are left behind or cycle through systems.
“If you think about the ER, they’re really good at gushing blood, broken bones, major things, but managing chronic disease, whether it’s arthritis, heart disease, aging-related diseases, infectious diseases, things that require lifelong medical attention, possibly not at the acute level, but will still require a lot of physician and health care time are a challenge for the health care system,” she said.
“The treatment is traditional and focused on early Lyme. Other than that, it tends to be difficult to pick up with a standard test. Whenever you don’t have a handy test that goes, ‘Bing, this is what you’ve got,’ that will slow people’s progression through the health care system. In general, people with complex, serious and chronic diseases are a challenge for the health care system even when it’s running well.”
Lloyd said the three asks by the NS Lyme Advocacy Group are good suggestions.
“Other provinces seemed to have managed, so I would say they are reasonable,” Lloyd said. “Education is very much appropriate and that would be lovely if that came from inside the health medical as opposed to volunteer advocates beating their heads against brick walls.”
As for the clinics, like Lugar, Lloyd pointed to clinics in Quebec that have been successful in treating Lyme. She said while there is a clinic in Fall River that treats chronic illness, Lloyd said she’d like to see a clinic that specifically deals with patients who have Lyme and other tick-vectored diseases.
“They’re starting to see a turnaround,” Lloyd said of the Quebec clinics. “These are people who have much the same horrible journey through the health care system, seeing doctor after doctor, and getting sicker and not being believed. Being seen and the treatment is starting to produce positive health care changes. It’s also good for health care system because they’re not continuing to see other physicians. They are getting better, which is kind of the point.”
Lloyd said she’d also like to see better testing for non-acute responses. She said the tests currently offered don’t detect bacterial infection, but rather test the body’s immune response.
“Some people don’t make a good immune response because they are old, because they’re sick, because of their genetics, because they’ve been sick too long, or they’ve been taking medications that suppress their immune systems.
“There are other tests that will pick those people up and give them and their health care provider better information about what’s going on with them. It would be really wonderful to see more modern diagnostic approaches being taken up and adopted, so physicians and patients would have more to go on other than, ‘Yeah, you feel horrible and you’re sick, but all the tests are normal.’”
She’d also like to see improvements in treatment, but also that patients just be treated better.
“Finally, a bit of compassion wouldn’t go amiss,” Lloyd said.
‘There’s no point in being a patient patient’
Lloyd has had Lyme disease herself. She contracted the disease about 10 years ago, not long after she finished treatment for cancer.
“I must say the experience between the response to the two different diseases was night and day,” Lloyd said “With cancer you’re believed, and there are strains on the [health care] system, but you’re generally treated with compassion. With Lyme disease, I had to fight for access and treatment, and frustrations with not being believed and treated badly. I was one of the lucky ones because I have resources because I am a scientist and I’m well connected with other scientists who know about Lyme disease and were able to give me good advice.”
“Then I had the financial resources to be able to obtain treatment. But yes, it’s really, really rough. That was 10 years ago. I’d like to think it’s improved. I tend to get the stories where it hasn’t improved, but it’s certainly not universally improved.”
Now that we’re in warmer weather and more people are outdoors, Lloyd recommends people do their tick checks. For those who suffer from chronic Lyme, she said “don’t give up hope.”
“It’s tough, but if people don’t speak up and demand that they get illnesses treated, it’s not going to change. There’s no point in being a patient patient.”
Response from the Department of Health and Wellness
The Halifax Examiner contacted the premier’s office, but hasn’t heard back. We will update this story if we do. We received a response from Khalehla Perrault, a spokesperson with the Department of Health and Wellness. She sent along details on the province’s Tick-Borne Disease Response Plan that includes:
- Surveillance for tick borne illnesses in humans
- Environmental surveillance to determine the distribution of vectors for tick borne diseases and the prevalence of disease-causing pathogens
- Prevention and control of human infection with tick borne diseases
- Communication to public, media and health care professionals
It’s important that people take precautions to prevent tick exposure when outdoors. Tick-borne illnesses such as Lyme, Anaplasmosis and Powassan are preventable by taking some simple precautions. Some precautions include tucking in shirts, pulling socks over pant legs, and keeping the grass cut. There is a lot of great information on our webpage.
We are looking how to best ensure those who need treatment after a tick bite can get it — without having to wait in the emergency department. While Lyme disease is certainly one of the more well-known tick-borne diseases, there are others that if left untreated, can become troublesome and have long term consequences.
It’s important to remember that pharmacists can now diagnose and prescribe a preventative antibiotic for tick bites that can lead to Lyme disease. For more information, visit https://novascotia.ca/dhw/pharmacare/healthcare-services.asp. The assessment would include whether the tick bite was from a blacklegged tick, if the tick was removed in the previous 72 hours and whether the tick was attached for at least 36 hours. The cost of this assessment is covered by the provincial government. If the antibiotic treatment — a single dose of doxycycline — is prescribed, the patient would pay for the dedication with their usual method.
Lyme Disease Awareness Month
Lugar is getting ready for Lyme Disease Awareness Month in May. She said she’s reached out to municipalities across the province asking them to spread the word about Lyme disease, educate their constituents, and perhaps light up municipal facilities in lime green. So far, Halifax City Hall will be lit up in lime green on May 1 and 2. There will also be a flag raising at City Hall the morning of May 2. Lugar did the same flag raising last May, which she said may have been the first flag raising for Lyme Disease Awareness Month in the world.
Province House, meanwhile, will light up the outside of the legislature from May 15 to 19.
“I think it gets the point across,” Lugar said. “Trying to get that out to an audience so people start taking this seriously.”
Lugar would like to see more brochures and posters in at visitor information centres across the province. Those centres will open soon for tourist season. In past years, Lugar has dropped off Lyme-related brochures, maps, and posters to visitor information centres herself. Still, she said those efforts don’t cover the entire province.
Lugar said a contact in Cape Breton told her they saw posters about Lyme disease in the public washrooms at the Cape Breton Highlands National Park.
The Examiner reached out to Parks Canada, and spokesperson Adam Young got back to us with this response:
We do have a couple of posters in the national park — they’re posted at the Ingonish and Cheticamp visitor centres, as well as at our trailhead displays. There is a poster specifically about Lyme disease, as well as a poster about ticks and Lyme disease.
Lugar said she’ll continue to share the information herself and dropping off more brochures and posters.
“We absolutely need increased awareness and prevention now. The biggest thing now is helping the people who are already sick and struggling. There are so many.”