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, that’s aimed at bolstering her immune system, offers small relief.
“I’d like to get better but the way my body feels sometimes I don’t know if it’s possible even if I’ll feel 90 per cent better. 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 post-treatment 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, nor does the department 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 health care system.
“If we didn’t keep on trying to find out what was wrong with me I would never have been diagnosed,” said Shaelene. “There are so many people out there that are sick and are not getting adequate treatment.”
Some are leaving the province and country to find it.
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 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. Dubocq says the majority of his Nova Scotia patients come to him desperate after running out of treatment options.
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 that 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. Shaelene recalls her lowest point came in 2013 after consulting with IWK Health Care infectious disease and pain clinic specialists.
“I was basically told I had fibromyalgia and was told to walk every day and I would be cured.”
Soon after that she ended up at South Shore Regional Hospital’s emergency room in Bridgewater in excruciating pain.
She said the emergency room doctor referred her to a specialist at the Queen Elizabeth II Health Sciences Centre, which unbeknownst to her turned out to be a psychiatrist.
“I remember sitting there crying after she told me she was a psychiatrist. She manipulated me into saying I was angry and that was why I was sick.
“Then I thought, ‘This is it, no one is going to help me any more.’
“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.”