LOOKING FOR HELP
Family can’t find treatment for their ailing daughter
Nova Scotia family seeks treatment for daughter with Lyme disease
“I still feel like I’m 13 sometimes because in many ways my life kind of ended then. Since I got sick, I haven’t gone to high school, I haven’t gotten my drivers’ license, I haven’t been able to work. Because I never got those experiences in life, I don’t feel like I’m 23.” Shaelene Robar
Shaelene Robar can remember the exact date, Dec 1, 2008, when her life came to a halt.
She was 13 years old, a member of her school’s track and field team, an above average student with dreams of becoming a marine biologist.
She woke up that December morning almost a decade ago with a debilitating combination of extreme nausea, fever and fatigue and believed she was suffering from a bad case of the flu.
She’s never gotten better. “I still feel like I’m 13 sometimes because in many ways my life kind of ended then,” said Robar, who lives at home with her family in New Ross. “Since I got sick, I haven’t gone to high school, I haven’t gotten my drivers’ license, I haven’t been able to work. Because I never got those experiences in life, I don’t feel like I’m 23.”
It would take two years and many demoralizing visits to her family physician and hospital emergency rooms in Lunenburg and Bridgewater before Robar found a doctor in Cape Breton who connected the dots and diagnosed her with Lyme disease.
But the standard antibiotic treatment she was prescribed offered no help and made her symptoms even worse.
Provided no other treatment options, she’s left to contend with the disease on her own. To manage her chronic pain, she relies on a concoction of powerful painkillers, including the opiate codeine. The naturopathic treatment she takes, which is aimed at bolstering her immune system, offers small relief.
“There’s a big part of me that thinks I’m going to be like this for the rest of my life – disabled and not able to live a normal life.”
She’s now labelled with posttreatment Lyme disease syndrome.
The condition is listed in the Department of Health’s communicable diseases manual and encompasses a broad range of patients who continue to show symptoms of Lyme disease after undergoing standard two- to three-week antibiotic treatment.
But the Department of Health does not keep a record of such patients or offer guidelines on how the syndrome should be treated.
“That’s between the clinician and the patient,” said department spokeswoman Tracy Barron.
It’s an unacceptable response, says Gail Robar, Shaelene’s mother.
For the past decade, she has travelled from one end of the province to the other with her daughter consulting with countless specialists, hoping in vain
for a breakthrough treatment.
“It would be nice if some doctor, some hospital, could take Shaelene in and find out what’s wrong with her and maybe give her her health back,” said Gail.
Both are convinced they represent a large and growing number of Nova Scotians with Lyme disease who have been abandoned by the province’s healthcare system.
Some are leaving the province and country to find help.
Last month, The Chronicle Herald spoke to Dr. Richard Dubocq, a Maine-based doctor specializing in Lyme disease treatment, who said he’s currently treating 50 Nova Scotians with the disease and has a success rate of 75 per cent. He offers long-term antibiotics therapy that runs anywhere from six weeks to four years, following International Lyme and Associated Diseases Society’s treatment guidelines.
But Robert Strang, Nova Scotia’s chief medical officer of health, rejects Dubocq’s approach, labelling long-term antibiotic therapy as “alternative treatment” and potentially dangerous.
Meanwhile, the number of reported cases of Lyme disease in the province nearly doubled in 2017, jumping to 586 from 325 in 2016.
Strang admits he sees no end to the spread of the tick-borne illness in the Nova Scotia but says the province’s health-care system has a handle on the disease and the resources to appropriately diagnose and treat it.
But the Robars say they’ve experienced the opposite and no longer have faith in the system.
“I’ve seen a gastroenterologist, rheumatologist, pediatrician and I was tested for every autoimmune disease that you can think of, every cancer, and nothing came back.
“When nothing comes back they basically tell you that it’s all in your head and that you have nothing wrong with you and you’re making this stuff up.”
For eight years she endured chronic and debilitating pain, regularly bed-ridden and requiring a wheelchair to get around, before being taken on at a pain clinic in Kentville two years ago. She says her physician there, Dr. Daniel Lazaric, is one of the few doctors who believe she has Lyme disease and encouraged her decision to seek naturopathic treatment about a year ago.
She has made small gains with the naturopathic treatment but recovery isn’t an option right now.
“Where do you go to find this help we need?” said Gail. “Unless you have your own money and if you can spend thousands of dollars, then maybe you can figure it all out.”