SICK AND TIRED
Sask. Lyme disease patients say they are falling through the cracks
Anika Kosteniuk, 19, who takes an array of drugs to treat Lyme disease, has spent the past seven years in pain after being bitten by a tick. People with Lyme disease can face a long and frustrating ordeal getting a diagnosis and treatment in Saskatchewan.
Anika Kosteniuk was 13 years old when a tick bite changed her life.
She was on vacation in Virginia, on the acreage of her great-aunt and uncle, when she found an eight-legged bug in her armpit.
Around the same time, on another acreage near Indian Head, Danah White also got a life-altering tick bite.
Like most Lyme patients seeking treatment in Saskatchewan, White and Kosteniuk have been through the medical-system ringer.
That may be because Lyme is viewed as an “emerging disease” in Canada and in Saskatchewan.
The Saskatchewan government says there have been three cases of Lyme disease in the province since 2008. White, Kosteniuk, Torsten Hoppe, and Triant and Marcia Steuart beg to differ.
All five have dealt with what they say is inadequate testing for Lyme disease and its co-infections.
The name Lyme was coined in 1976 for a Connecticut area where it was found to be prevalent. It’s caused by a bacteria, Borrelia burgdorferi, commonly carried by the black-legged tick. That tick is not officially recognized in Saskatchewan — American dog ticks and wood ticks are the common species here.
Lyme is treated with antibiotics, but there’s “a very short window to catch it and then treat it,” before long-lasting effects begin to set in.
That’s according to Canadian country music star Shania Twain, who has recently gone public about her own struggle with Lyme disease.
Like Kosteniuk, Twain was bitten by an infected tick in Virginia.
“In my case I was lucky that I saw a tick fall off me. But a lot of people don’t even realize that they got bit,” said Twain. That’s what happened to White. She believes she was bitten in 2010, cleaning up her family’s newly purchased property, where the grass hadn’t been cut in years.
She didn’t immediately get sick. She didn’t get the so-called signature bull’s-eye rash, which the Centers for Disease Control and Prevention (CDC) says occurs after 70 to 80 per cent of Lymeinfected bites — although some studies have found the rash incidence is much less frequent.
Lyme lay dormant in White’s body until December 2012, when her immune system faltered due to bronchitis.
“I never got better after that,” she said.
Kosteniuk’s illness came on much more quickly. The same day she found the tick — she doesn’t know how long it was there — she was hit with chills, nausea, fever and body aches. Her armpit swelled. Soon she was having trouble walking and standing, and her joints hurt.
It was all downhill from there. Now almost 20, Kosteniuk has spent the past seven years in pain.
She made a list of her symptoms: In all, more than 90, although “day to day it’s probably around 40,” said Kosteniuk.
Nerve pain that never goes away, knee pain, joint stiffness, aching skin, nausea, headaches, a sore neck, dizziness, shortness of breath, heart palpitations, extreme fatigue … The list goes on.
When her family returned to Saskatoon, Kosteniuk saw a doctor who prescribed antibiotics, just in case her tick bite meant Lyme disease. But when her blood test came back negative, the doctor stopped her antibiotics.
In the months and years to come, Kosteniuk was misdiagnosed with patellofemoral pain syndrome, Raynaud’s syndrome and chronic pain syndrome.
Her pain was so bad she had to drop out of high school at Aden Bowman.
Hip pain was among White’s first symptoms. In April 2013 a doctor told her she must have rheumatoid arthritis.
Then there were neurological issues, twitching hands and feet. An active 39-year-old, she began falling into grocery carts and walking into walls. By August, she needed a cane to walk and spent a week in hospital.
She assumed she had MS, and so did a neurologist, who was proved wrong after a spinal tap.
To that point, she had been tested twice for Lyme. In all, White tested negative four times per the ELISA test.
The enzyme-linked immunosorbent assay test is the first step to a Lyme diagnosis in Saskatchewan.
If the Saskatchewan Disease Control Laboratory (SDCL) finds a positive ELISA result, it sends the blood to the National Microbiology Laboratory in Winnipeg for the followup Western blot test, which also measures antibodies.
A positive Western blot result means someone is officially recognized as having Lyme. This testing method is CDC sanctioned.
Getting to that second stage can be tricky, as there can be false negatives in testing. It takes several weeks for antibodies to build up in the blood. If someone is tested right after a tick bite, their test is likely to show up negative.
In 2016, 1,454 ELISA tests were done in Saskatchewan, 38 of which were sent to Winnipeg.
“Occasionally even if the ELISA says indeterminate, we will send it to Winnipeg for a Western blot. There is a small grey zone,” said Dr. Greg Horsman, medical director for the SDCL.
“These are well-established testing algorithms and very sensitive tests that have been developed for the public health lab system, and that’s the algorithm that we’re using now.”
Horsman said federal and provincial partners are currently working to review testing strategies for Lyme, because of “the controversy” around testing methods.
The tests in Canada only consider one strain of Borrelia, when there are many co-infections.
That’s why so many Lyme patients send their blood work out of country, to labs like IGenex Inc. in Palo Alto, Calif.
For about $1,000, it tested White’s blood, which is how she found out she had Lyme disease.
IGenex also diagnosed Saskatoon couple Triant and Marcia Steuart, who, “as far as the government of Saskatchewan is concerned, do not have Lyme disease,” said Triant. “They are using that one particular strain and that one particular test to say, ‘Nope, they don’t fit the box.’ ”
IGenex looks for other strains of borrelia, as well as other tickborne infections, including babesia, bartonella, ehrlichia and rickettsia.
Armin Labs does the same in Augsburg, Germany, which is where Qu’Appelle resident Torsten Hoppe hopes to receive a diagnosis.
He was scheduled for testing on Monday. By now he should know the result.
A German citizen, Hoppe was bitten by a tick at Katepwa three years ago.
If he is positive for Lyme, as he suspects, Hoppe plans to spend the next three months at his parents’ home in Detmold undergoing treatment — specifically, taking antibiotics.
Lyme is known as the great imitator because it imitates hundreds of other illnesses.
In January, Hoppe twice had a 180-beats-per-minute pulse, which he said the Fort Qu’Appelle hospital brushed off as an anxiety attack.
He has vertigo and has gone temporarily blind.
Then there are the “little things” — the taste of metal “like you’re sucking on a nail,” tinnitus and quick-shifting pupils — “which you don’t really notice because you focus on the ones that really hurt or make you feel uncomfortable,” said Hoppe.
“You experience all those things, the doctors say you’re healthy, and then you start thinking ‘wait, am I crazy? Is it me?’”
White was sent to a psychiatrist to prove she wasn’t imagining her symptoms, which, like Hoppe’s, ran the gamut: “(Doctors’) theory … was that I’d woken up one morning with carpal tunnel, chronic fatigue, fibromyalgia, and a seizure disorder,” said White.
“I said, ‘Something is causing all of this. Something is throwing my entire body out of whack.’ ‘No, no, these are different things, it’s not related.’ ”
Triant Steuart experienced cardiac and neurological issues, and memory loss — to the point that he forgot his name and how to handwrite — after a tick bite on a Saskatoon golf course in 2014.
The effects weren’t limited to him: His wife Marcia, who experienced colitis-like gastrointestinal issues, was also diagnosed with Lyme. They believe he transmitted the illness to her.
They only suspected Lyme after Googling their shared symptoms.
White had been blogging about her ordeal, when a friend of a friend suggested she might have Lyme disease.
After receiving her IGenex test results, her rheumatologist didn’t believe it — we don’t have those ticks here, White was told.
“I had a doctor that laughed at me too,” said Hoppe. “He just said, ‘Don’t believe this s--t on the internet. I studied, not you.’ ”
He was assured that there are no Lyme-carrying ticks in Saskatchewan.
Similarly, White’s neurologist’s rule was to only order a Lyme test for patients who had travelled to places like Massachusetts, where Lyme is prevalent.
“They’re being trained that there’s nothing wrong, ‘There’s no Lyme here, don’t worry about it,’ so they’re not even letting it enter their minds,” said White.
She said she “disgusted” an infectious disease doctor in Regina with her test results.
“‘I get these test results across my desk every three weeks,’ he said. ‘They mean nothing. They’re trying to sell you snake oil,’ ” White recalled. “I said, ‘They have me on antibiotics, I’m getting better, how do you explain that?’ He said, ‘Maybe you’re just getting better on your own.’ ”
Dr. Theresa Tam, interim chief public health officer for the Public Health Agency of Canada, and Dr. Denise Werker, deputy medical health officer for Saskatchewan, have called Lyme an “emerging disease.”
“Very few physicians in Canada have experience with (Lyme borreliosis), and a major contributor to the difficulty of making clinical diagnoses is that a wide range of symptoms are associated with (Lyme),” according to an Open Neurology Journal article from 2012.
“Lyme is known as the great imitator,” said Kosteniuk, “because it imitates hundreds of other illnesses like MS, arthritis, fibromyalgia, Parkinson’s, ALS, Lupus, chronic fatigue syndrome, Alzheimer’s, dementia and even mental illnesses like depression, anxiety and schizophrenia. So people may be diagnosed with these other disorders.”
“It’s easy for them to say to me ‘you have Parkinson’s disease, now go away.’ That’s happened to me,” said Triant Steuart.
“You nod your head and you say ‘OK, you went to school, you know, just give me what I need to make this pain stop.’ ”
The Saskatchewan College of Physicians and Surgeons, which could not speak to methods of diagnosis, said it has received no complaints regarding Lyme misdiagnosis.
The College of Family Physicians of Canada, which establishes standards for training and ongoing education of family doctors, does not have any official policies with respect to Lyme disease.
The Royal College of Physicians and Surgeons, which oversees specialists’ education in Canada, says it does not weigh in on clinical procedures.
Werker said physicians are encouraged to test for Lyme.
“There is information that is provided to physicians through news bulletins, and we encourage physicians to use the information on the Public Health Agency of Canada website that provides information on diagnosis and treatment,” she told media in June.
The federal government introduced a “federal framework on Lyme disease” on May 30, along with a $4-million investment to support it.
In consultations with hundreds of patients, caregivers and medical professionals, it’s a plan geared to future prevention and treatment of Lyme disease.
Education is a key component. In the framework, the federal government recognizes the message that “Canada’s medical system has failed Lyme disease patients” and that “many patients feel disrespected and not listened to by the medical community.”
“There is no doubt that we need much more research to better guide diagnoses,” said federal Health Minister Jane Philpott. “We need better surveillance and we need more education and awareness to inform both the public and practitioners about this infectious disease.”
White was prescribed “normal, run-of-the-mill antibiotics” through a Calgary clinic, obtaining the drugs by mail from British Columbia and paying for everything out of pocket.
Within two weeks of her 23 months on antibiotics, she could walk without a cane and never had a full seizure again. A year after finishing treatment, she is back to 90 per cent normal.
Upon testing positive, the Steuarts found a Saskatchewan doctor willing to prescribe them antibiotics, and they began to improve. They have been on them since last fall.
The patients say most doctors are reluctant to prescribe antibiotics for longer than a month, a disadvantage to Lyme patients who require long-term antibiotics to kill the bacteria.
Kosteniuk had a good reason for trying naturopathy, another avenue for Lyme treatment: “We’ve sort of gone through the ringer with Western medicine, so let’s try this out.”
She takes different herbs and supplements to kill the bacteria in her body, per the guidance of Calgary naturopath Rebecca Risk.
Antibiotics can be hard on the digestive system; White counts herself lucky she was able to stomach them.
The Saskatchewan government has officially reported three cases of Lyme disease since 2008, two of which it says were acquired outside of the province.
Also since 2008, it has collected 21,502 ticks. Fifty of those were the black-legged tick, traditionally believed to be the only tick species that can carry Lyme.
Of those 50, only four were infected with Borrelia burgdorferi.
But, Kosteniuk posited, “How many of the thousands or millions of other ticks that haven’t been tested are black-legged and carrying Lyme?”
Almost three decades ago, the Canadian Medical Association Journal published that dog ticks in southeastern Saskatchewan are “known to be capable of transmitting Borrelia burgdorferi.”
“If they knew that back then, what changed to make them now say dog ticks can’t carry it?” Kosteniuk wondered.
“I don’t know what the point is of not acknowledging (Lyme) here in this province,” said Hoppe.
The government is adamant that black-legged ticks are coming into the province on migrating animals — birds and deer — and are not breeding in Saskatchewan.
Horsman said it takes two years for the tick population to become established and breed.
“They have to live two years, and we have cold winters that get in the way of that,” said Horsman.
“If they don’t want to talk about Lyme disease because of this scientific way to get around it,” said Triant Steuart, “let’s talk about vectorborne diseases. Let’s talk about the ticks that are biting us every day and what they’re carrying.”
In addition to Lyme, he has tularemia from a tick bite.
While Werker admitted ticks carry other diseases in the province — including tularemia, Rocky Mountain spotted fever, anaplasmosis and babesiosis — she said they were “very rare.”
But research by University of Saskatchewan tick expert Neil Chilton proves otherwise.
In a 2012 Applied and Environmental Microbiology journal article he co-authored, 93 per cent of Saskatchewan ticks he tested were positive for francisella, the bacteria that causes tularemia.
Of 813 ticks collected in the provincial parks of Saskatchewan Landing, Buffalo Pound, Douglas, Danielson and Blackstrap, as well as in Outlook, Harris, Wakaw and at Grasslands National Park, 754 were positive for francisella.
Neither the ELISA nor the Western blot tests look for co-infections like tularemia.
As it is, the patients have been their own advocates.
The Lyme Disease Saskatchewan Facebook group has helped.
From Prince Albert, Carrot River, Oxbow, Wadena, Viscount, Rosetown, Broadview, Weyburn, Assiniboia, Estevan and beyond, group members discuss symptoms and treatment options, and generally try to elevate each other’s spirits.
“Most days I can’t leave my house. I’ve lost friends because people don’t understand why you have to cancel plans or why you’re too sick to see them,” said Kosteniuk.
In White’s experience, friends “no longer want to really be around you when you look like you’re having a seizure all the time.”
Marcia Steuart said it has been a “blessing and a curse, but mostly a blessing ” that she and her husband both have Lyme, because they can understand what each other is going through.
White said Lyme disease cost her her marriage, and put a huge financial strain on her family.
Part of the federal framework involves analyzing the costs associated with Lyme disease.
White estimates she lost $60,000 in wages, being unable to work as an insurance broker and realestate agent. Over the next three months, Hoppe expects to be out $36,000 from his work as a metal artist.
Triant Steuart had to sell his part of a business, O’Brien’s Automotive. Marcia has been on leave from her job as an advocate for children and youth.
Kosteniuk, who is thinking of becoming a veterinarian one day, will first have to complete high school.
In treatment, they have all paid for their own medications.
On the broader spectrum, there is a financial cost to the health-care system.
Each have had unnecessary X-rays, MRIs and CT scans. There have been hospital stays, tying up specialists who couldn’t diagnose them and trying medications that didn’t work.
“It cost us $50,000 a head, call us $100,000, to find no results,” said Triant. “Multiply that by the number of people that are currently unfortunately misdiagnosed.”
Kosteniuk advised sick people to do their own research.
“If you have chronic unexplainable symptoms and your doctor can’t give you any answers, or if you’ve been diagnosed with MS or another disorder but the treatment isn’t working, and you have symptoms coming and going — especially migrating joint, muscle or nerve pain, fatigue, trouble sleeping, poor memory and brain fog with good days and bad days — then those are all signs that you could have Lyme,” she said.
“I really just want people to research on their own and be their own advocates, because that’s the only way that you’ll really get help for it.”