Andréa Dykstra wouldn’t wish Lyme disease on anyone.
But even after suffering through its symptoms for nearly a decade before her own diagnosis, she says, given the option, she also wouldn’t change one step of her own journey.
“I realized everything I’ve been through has made me the person I am today, and I love that person,” the White Rock woman told Peace Arch News. “I have Lyme disease to thank for that; it’s been 10 years of introspection.”
Dykstra, 41, was infected with the tick-born disease in 2005, when she was bitten during a search-and-rescue training weekend in Logan Lake.
Though she’d had training in what a tick looks like and what to do if one attaches itself, this particular tick was a blood-engorged adult – something she had not seen before – and Dykstra thought it was simply a black beetle. So, she flicked at it.
Eventually, the “beetle” detached itself, and Dykstra continued on without a second thought.
It wasn’t until six months later that symptoms of something amiss began to plague her body: exhaustion, insomnia, aches and feeling generally “out of sorts.”
Ten years later, Dykstra is living with “agonizing” tension headaches, nerve and muscle pain, “brain fog” and dehydration. She’s also acutely anemic, and describes her senses as “basically on steroids.”
She wasn’t diagnosed – at least not with Lyme disease – until last July.
Until that point, her diagnoses ran the gamut, including depression, cancer, fibromyalgia, multiple sclerosis and osteoarthritis.
“It just kept getting dismissed and dismissed,” she said, of the true root cause of her problems.
Dykstra’s story is not unique. In recent years, Peace Arch News has told the experiences of other readers who have also suffered with the debilitating effects of Lyme and endured the long, difficult road to a diagnosis.
Each told of countless doctors’ visits, misdiagnoses and expensive treatments. Each also hoped that sharing their story might make things easier for the next person.
Dykstra said she shares the same goal, and she’s hopeful the recent passing of Bill C-442 – the Federal Framework on Lyme Disease Act, which became law in December – is a step in the right direction.
Introduced by Green Party leader Elizabeth May, Bill C-442 requires the Minister of Health, within 12 months, to “convene a conference with the provincial and territorial ministers and stakeholders, including representatives of the medical community and patients’ groups, for the purpose of developing a comprehensive federal framework” to address the challenges of the recognition, timely diagnosis and treatment of Lyme disease.
“Doctors will actually now be forced to recognize that Lyme exists,” Dykstra said.
According to the federal government, the incidence of Lyme disease is on the rise in Canada. Between 2009 and 2013, the number of reported cases more than quadrupled, to 682 from 144, and officials believe the actual number of infections is even greater.
As Lyme is most treatable when caught early, by the time Dykstra had the right diagnosis, it was years too late for antibiotics. She was late-stage chronic and the disease had thoroughly infiltrated her body’s systems – and drained her financially.
“One thousand (dollars) a week was an easy spend for me,” she explained, “just getting all the stuff our government doesn’t cover.”
“A lot of money on things that didn’t work, but when you’re not healthy, you’re basically willing to try anything.”
In February, facing homelessness, Dykstra reached out to friends and was connected with a couple in Colorado who offered to take her in. At the same time, she created a GoFundMe page in an effort to raise enough money to afford treatment at a specialized clinic in Washington, along with travel costs, natural supplements and the expense of Gerson Therapy – an organic diet touted to heal a variety of degenerative diseases by boosting the body’s immune system.
She’s confident that if she can get her immune system and her adrenals back on track, “that will make a world of difference.”
She admits it wasn’t easy to ask for help.
“I don’t like being vulnerable,” she said. “When I first asked it was really, really tough. (Then), people were so happy that I actually asked, because they could finally do something for me.”
She encouraged people not to live in fear of Lyme, but to be aware of it, and aware of what to do if they think they have it – do not try to pull a tick off, it must be carefully extracted; and if bitten, get the tick tested.
“If you can catch it early, it does not impact your life,” Dykstra said. “You don’t have to go through 10 years of suffering, or a few years of suffering.
“If you think you have the symptoms, if there’s stuff that’s just weird for you, get that checked out and just be adamant that they do the Lyme testing. It’s all about standing up for your rights.”