By Chris Jones/Active Senior’s Digest
With Lyme Disease Awareness Month now in the past, Linda Lowery hopes awareness regarding the disease will spread.
Lyme disease is a bacterial illness that affects people and animals. It spreads by the bite of an infected tick.
However, according to Lowery there is so much more to it than that.
A survivor of the debilitating disease herself, Lowery is now trying to help people be more informed about what will happen if they contract it, what they can do to prevent it, and what she says health providers aren’t telling people.
An Oshawa resident, Lowery says she doesn’t know how or when she contracted the disease as while she enjoys being outside, she has never considered herself an “outdoorsy” person.
“A lot of people have to learn… people are really vulnerable right now,” says Lowery.
She says the important thing to remember about Lyme disease is there are also numerous co-infections which can come from the bite of the tick, such as Bartonella disease.
She explains the condition was named after the town of Lyme, Connecticut.
“It’s been around for quite a while, but it’s becoming a real health threat, and that’s where I get concerned because people don’t know enough about it to keep themselves safe,” she explains.
She says how it manifests will vary depending on where the bacteria has “lodged” in the body.
“So there’s an arthritic line, there’s a neurological line, Lyme carditis when it affects your heart, so it can really have a devastating impact – it does have a devastating impact on your body,” she says.
Lowery notes there is a divide on the issue of Lyme disease, with one side falling in line with the Infectious Disease Society of America, which she says “our public health agency follows.”
The other side is where Lowery falls, and that is with the International Lyme and Associated Diseases Society.
Around the time she became infected, Lowery says her son suffered a “catastrophic brain injury” in the autumn of 2008.
“It was a very stressful journey helping him,” she says. “As he started to get better, I noticed I wasn’t. I was starting to get sicker and sicker, and at first, I thought it was due to just the severe stress I was under with my son, but then I started to get increasing numbers of symptoms.”
She began to have crushing fatigue to the point it was everything she could do to get out of a chair and function at all.
“To get up to bed at night, I had to pull myself on the railing, and sometimes my husband had to come and help me go step-by-step to get upstairs,” Lowery recalls. She also started having issues with her vision and her memory.
“My memory, especially in that period, it’s just like a black pit. I don’t remember anything,” she says. “I used to be able to do presentations and just talk off the cuff. Now when I do a presentation, I need the PowerPoints and I need my notes to refer to.”
She says due to her experiences with Lyme disease, she still has extensive memory problems.
Next, she began experiencing numbness and tingling in her hands and feet.
“I would wake up at night – it still happens on occasion – and I would have no feeling, for example, in my hand. I could bite it and would not feel anything,” she says. “Then it started moving up my arm and I got really scared to go to bed at night because I was thinking ‘this is paralysis’…[and] it was going to creep up even further.”
Lowery also experienced severe insomnia, as she went several months only getting two to three hours of sleep every night, and couldn’t get any rest at all.
“During this period, when all these things were happening, I did not think at all of Lyme disease, even though my sister-in-law in British Columbia has Lyme and I was somewhat familiar with it,” she says.
According to Lowery, she saw five neurologists, a couple of cardiologists, “you name the specialist, I went.”
Every test she underwent showed there was nothing wrong.
“It was to the point where the last neurologist I saw sat there looking at me, and I’m sitting there feeling brain fog, I’m feeling dizzy, no feeling in my feet, and he says, ‘There’s nothing wrong with you, you look fine,’” Lowery explains.
Lowery explains it was very tough to hear because she’s a “bright, capable, productive woman.”
“It was very difficult to have these specialists sit there and tell me I was fine and there was nothing wrong with me,” she says.
In January 2015, Lowery says she had begun to use a walker. She needed help getting up and to go to the bathroom.
“My husband couldn’t leave me alone,” she says. “I had to have babysitters with me all the time. I couldn’t raise my eyes off the floor, I would feel terribly nauseated and incredibly dizzy.
It was really, really scary and I was getting sicker.”
She says at that point she was afraid she was going to die.
“I really, really felt that was the course I was on,” she says.
She says a connection she had within a hospital in Toronto asked her for all of her records and gave them to another neurosurgeon.
“The neurosurgeon took all of my records home, and said to me after reviewing them all, ‘I don’t understand what’s happening to you Linda, the only thing I can suggest to you is that you see a naturopath,’ and that’s what I did,’” explains Lowery.
She notes it was the naturopath who sent her blood to a lab in California, and it came back positive for Lyme disease, and she was diagnosed with two co-infections.
“Meanwhile, I had, just because I was curious and I knew my sister-in-law had Lyme disease, had asked for the Canadian test for Lyme disease in 2012, and it came back negative, so being naïve I took that at face value and thought okay it isn’t Lyme disease,” she explains.
It was very shocking for her when she found out she had Lyme disease, and she had no idea at that point what the diagnosis meant until the naturopath said to her, “I’m really, really sorry, Linda.”
After being diagnosed, Lowery says she had to travel to the United States and see two specialists in New York.
She still sees the one specialist every three months, and she also sees naturopaths and others in Canada.
“It’s been quite a journey to begin to recover my life from Lyme disease,” she says.
Today her symptoms come and go, but she also suffers from anxiety and depression, which she says is common for those who suffer from Lyme disease.
While she was shocked with her diagnosis, at least she knew “who the enemy was” and could now fight back.
Today, Lowery is trying to fight back against the misconceptions surrounding Lyme disease.
She claims one such misconception is the idea one has to have a rash which is often circular or in the shape of a bulls-eye.
Lowery says she never had that rash and believes this is part of the reason it took her so long to be diagnosed.
“It’s usually 50 per cent or under – as low as 30 per cent of people might get a bulls-eye rash,” she explains. “So as long as they’re giving that information to people to ‘You’re going to get a bulls-eye rash’ and all this sort of stuff, people are going to be really at risk.”
She says ever since being diagnosed, she has had to make massive changes to the way she handles her health, such as blocking inflammation to her body through diet and nutrition.
She notes she was on various medications for two-and-a-half years, ranging from antibiotics to anti-malarial drugs before she was finally able to move forward.
According to Lowery she still takes a number of supplements each and every day.
“The cost of this has been phenomenal, and I’m not alone in this,” she says. “I stopped adding up my out-of-pocket expenses at $75,000.”
She notes they’ve had to re-mortgage their house in order to continue living there.
“I know families in Durham Region that have had to travel out of the country for extended periods of time,” she says.
Two of the families she knows had to travel to India, with another woman recently going to Mexico for eight weeks.
She says these families are looking at roughly $100,000 for each of those trips, and that won’t be the end of their treatment.
“People are losing their careers, they’re losing their homes, they’re losing their independence,” she says.
For Lowery, since her background was in project management and educating people about various topics, she decided to take Lyme disease on.
In addition to trying to get well, she has been trying to shed a light on
the disease, as she believes there is a lot of misinformation leaving people vulnerable.
“There definitely isn’t enough coming from health departments, from the public health agency of Canada, from the media,” she explains.
She explains partly due to climate change, ticks are coming further north and are extremely prevalent in the northeast United States.
Looking at a map from Public Health Ontario, Lowery notes the map says the probability of encountering a tick with Lyme disease is low, but she believes otherwise.
“Durham Region is in a hotbed – up into Ottawa we’re in a hotbed,” she says. “Nova Scotia is one of the worst areas in Canada for ticks and Lyme disease. So, the message is still getting out there that your risk is low, and it’s not low.”
Since she is not a big outdoors person and she contracted Lyme disease, it should tell people that anybody is at risk, Lowery says.
“I have no idea where I was infected,” she says. “Whether it was here in Durham Region – we had a cottage up north – I have no idea where I was infected. I never saw a rash, I never saw a tick.”
She notes ticks are tiny, going so far as to say they are the size of a poppy seed, and she wonders what the chances are someone will actually find a tick on their body, especially since they like to crawl to dark, moist areas on the body.
“What’s the chance of you finding one, and being able to remove it? Very, very rare,” she says. “What’s the chance of you seeing a bulls-eye rash on your body? It could be on your back. You live alone? Who’s going to see it? It could be in your hair.”
For those who wish to avoid getting Lyme disease, Lowery says there is a lot they can do.
Lowery notes she often gets one to three calls every week regarding Lyme disease where people ask for advice.
She says while she doesn’t give people medical advice as she isn’t a medical professional, Lowery is happy to give people advice based on her personal journey.
She notes while not everyone may be willing to do this, people can wear pants during the summer, even going so far to close off the bottom of their pant legs, and people should also wear closed-toe shoes.
Lowery notes there is so much more people can do, and they can find more at websites such as https://canLyme.com/Lyme-prevention/