Family separated by expensive battle against Lyme disease
'When your two-year-old says, "I miss mommy," you can only explain so much to them'
Lindsay Boychuk lived for the outdoors and her family, enjoying life on their two-acre property outside Oakbank, Man., but for months, she's been at a clinic in Florida as her husband prepares to sell their home to pay her medical bills.
Lyme disease has separated her for months from her three children and her husband, Mark Boychuk.
"It's been tough," Mark Boychuk said. "When your two-year-old says, 'I miss mommy,' you can only explain so much to them."
Boychuk's husband started to notice something was off just a few months after their daughter, Laurel, was born in March 2017.
"I began to feel pain in my leg and my shoulders, and then four months later, I developed an extreme amount of anxiety, almost overnight," she said.
For 14 months, doctors treated her for postpartum depression, hospitalizing her and even giving her 20 rounds of electroconvulsive therapy treatments. Her mental health continued to decline, and family and friends watched over her nearly 24 hours a day as she became suicidal.
A call to a doctor in New York, who specializes in treating patients with severe depression and anxiety, made her start to question her diagnosis and treatment.
"In less than five minutes, they said, 'I'm going to ask you a few questions,' and I answered yes to them all, and they said 'I strongly feel you have neurological Lyme disease,'" she said.
When her tests in Manitoba for Lyme disease came back negative, the family paid for tests at four independent labs in Germany, California and Colorado. They all came back positive for Lyme disease, which is transmitted through bites from black-legged ticks, also known as deer ticks.
There are three reportable tick-borne diseases found in Manitoba:
Health Manitoba says in 2018, there were 28 confirmed cases of Lyme disease, 26 probable cases and another 16 cases that were reported by a physician or lab report, but did not meet the national surveillance definitions for a confirmed or probable case of Lyme disease.
Boychuk's independent tests said she had more than one strain of Lyme disease in her system, as well as babesiosis.
She took her results to a naturopathic doctor and medical doctor in Manitoba and they developed a treatment plan.
But the family's hopes were quickly doused. Due to the extreme progression of the disease, Boychuk's body would not accept the medication she was given, which instead caused convulsions and seizures.
"When your wife is having seizures, it's tough, but the biggest thing is we didn't give up," Mark Boychuk said.
Not giving up meant leaving Manitoba and finding help elsewhere.
Leapfrogged waiting list
The Sponaugle Wellness Institute in Florida, which treats chronic Lyme disease, accepted her as a patient. Documents provided by Boychuk say doctors there were so concerned about her worsening condition, they leapfrogged her over their waiting list.
Since mid-June 2019, Boychuk has been away from her family, receiving treatment that's adding layers to the blanket of debt the family is already under.
Treatment, living and travel costs, coupled with the U.S. exchange rate, make the cost of her treatment approximately $10,000 Cdn per week. By the end of her 20-week treatment plan, the family's bills could top $250,000 Cdn.
That doesn't include the $250,000 Cdn already spent going to other clinics in the U.S, trying to diagnose her sickness.
"We've sold boats, quads, snowmobiles and our assets, and the house is about to go up for sale. You do whatever you've got to do," Mark Boychuk said.
A GoFundMe page called Help Lindsay beat Neurologic Lyme Disease was set up to help cover costs.
Boychuk's medical team in Manitoba — an internal medicine doctor specializing in Lyme disease at Victoria General Hospital, her psychiatrist, naturopath and clinical psychologist have all submitted letters to Manitoba Health, saying she should be eligible to receive out-of-country support.
A decision is still pending and the family remains hopeful they will get covered.
However, they're frustrated and concerned that current testing in Manitoba couldn't detect Lindsay's strain of Lyme disease.
Manitoba Health says it trying to streamline, co-ordinate and improve patient care for people with late Lyme disease and other emerging tick-borne diseases.
A provincial spokesperson said a collaborative care service centre announced in spring has already hired a doctor and a primary care nurse will start shortly. It's expected to launch in late fall or early 2020.
While that may come too late for the Boychuk family, Lindsay said she is feeling better and looking forward to being with her family again.
A plan is now underway to put together a charity concert with Mark's tribute band and other bands to raise more money, and Mark is grateful for all the support he's received while Lindsay is in treatment.
"I've got my parents, lots of friends, lots of family helping out. The community support has been unbelievable as far as support."
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