The Chronicle Herald (Provincial)
Woman questions options
Madison Sagle couldn't get up off her bedroom floor.
Her legs buckled as she stepped out of bed. Pinned by some invisible force, she could barely move her left arm and leg. The entire left side of her body went numb.
“I didn't know if I was having a stroke; or if I was going to pass out,” recalled Sagle.
For more than a month the Lawrencetown mother of two had been in and out of two different hospitals trying to find out what ailed her. Her debilitating neurological symptoms included bouts of vertigo that kept her bedridden for days at a time.
It would take another month of more hospital visits and a trip to a neurologist before she started to get to the root of her illness.
She was diagnosed with Lyme disease and multiple sclerosis in June.
But her path to reclaiming her health is by no means clear. Late-stage Lyme disease symptoms like hers can often mimic multiple sclerosis.
MS is a mysterious autoimmune disease in which the immune system attacks the body. There is no test that can diagnose the condition and its cause is not precisely known. Diagnoses are based on wideranging symptoms including weakness, blurred vision, dizziness and numbness.
Untreated Lyme disease can manifest itself similarily. A person can become infected with the Lyme-causing Borrelia bacteria after being fed on by an infected tick. Left untreated, the bacteria can wreak havoc on the central nervous system.
Sagle's case shines a light on the limitations of Lyme testing and treatment options in this province. In Nova Scotia, doctors are essentially given one option in treating Lyme disease, regardless of how advanced the case may be — 10 to 28 days of antibiotic treatment.
Nor is there testing available that can definitively determine whether Lyme is the cause of her symptoms and not MS.
Those gaps in testing and treatment could be significant in a province that has the highest rates of Lyme and MS in the country, says Donna Lugar, founder of Nova Scotia Lyme Disease Support Group.
"Without 100 per cent accurate testing for either Lyme or MS how are we determining what it is?"
Once Sagle finishes her antibiotic treatment next week she'll be considered all but cured of Lyme, regardless of whether her symptoms improve or if she tests positive for the disease.
It says so in the Guidance for Primary Care and Emergency Medicine Providers in the Management of Lyme Disease in Nova Scotia. The province's public health infectious diseases expert group authored the guidelines saying treatment cures 95 per cent of Lyme cases. It also says those who have lingering symptoms after the standard recommended treatment should be "re-evaluated to determine if the diagnosis of Lyme disease was accurate or if they may have a different or new illness.”
“Doctors were telling me that what I have isn’t that serious. Well, I couldn’t walk, and I still can’t drive. I have young children at home, so yeah, this is serious.”
The only other option seemingly available to Sagle is treatment for multiple sclerosis.
She finds herself among a growing list of Lyme sufferers in Nova Scotia feeling abandoned by the province's health-care system.
Sagle says the province's “cookie-cutter” approach to treating Lyme is failing her and others with the disease. Her symptoms have improved little by little on antibiotics but she insists that four weeks of treatment isn't sufficient to kill off the Borrelia bacteria that causes Lyme disease.
She's worried that she'll be effectively forced into MS treatment prematurely. As of yet, she has not been referred to an infectious disease physician.
“I don't want to take this MS medication until I know the Lyme is gone and I know I've healed from Lyme," said Sagle.
“Then I want to be reevaluated for multiple sclerosis and get a second opinion. I just really feel like Lyme needs to be gone before we can say it's anything else."
Dr. Elena Frid, a neurologist based in New York City, agrees. Frid, who specializes in treating Lyme disease and autoimmune disorders, says Lyme can present like MS clinically and radiologically but the treatment for MS versus Lyme is vastly different.
She points out that MS is treated by lowering one's immune system but with Lyme that may be detrimental and instead antibiotics are appropriate.
“I would recommend continuing treating for Lyme, especially if she is continuing to see gains from treatment," said Frid. "MS treatment is largely to prevent future flairs and so treating for Lyme, if that is the trigger in this case, would help to do the same.”
In this particular case she said it's important to test for other possible causes, including tick-borne infections besides Lyme, such as Bartonella and Babesia.
Frid calls the Lyme treatment regimen in Nova Scotia a "one-size-fits-all approach" that is no longer valid "as we understand how complex this disease process can be for many."
"Lyme disease is a difficult disease to diagnose and treat," she said. "Patients present with different degrees of impairment and disability and so different treatment protocols and options need to be in place."
MS Society of Canada also acknowledges that Lyme disease can share symptoms with the autoimmune disease and in such cases should be ruled out in diagnosing MS.
BREAKING DOWN THE NUMBERS
Nova Scotia has one of the highest prevalence rates of MS in Canada and the world. A 2013 study published in the peer-reviewed Canadian Journal of Neurological Sciences estimated the proportion of MS cases in the province to be 267 per 100,000 of the population.
Similarly, Nova Scotia has by far the highest proportion of Lyme disease cases in the country. In 2018 the rate of Lyme disease in Nova Scotia was reported at 47.3 per 100,000 of the population, 15 times higher than the national rate. Those cases represent only a portion of actual Lyme cases because many go undetected.
Still, the number of confirmed and probable Lyme disease cases reported in Nova Scotia nearly doubled between 2018 and 2019, jumping to 830 cases from 454. Numbers for 2020 have yet to be reported this year by the province.
Apart from the lack of Lyme treatment options in Nova Scotia, testing options that can identify late-stage or advanced cases of the tickborne infection are also limited.
Sagle's neurologist wants to test her cerebrospinal fluid for the presence of Borrelia bacteria antibodies in her brain and nervous system.
But the test cannot 100 per cent determine whether the disease has spread to her central nervous system. Depending on the antibody count cerebrospinal fluid testing can identify whether the person has or has had neurologic Lyme, according to Columbia University Lyme and Tick-borne Diseases Research Centre. The centre's resource website also states that patients may still have neurologic Lyme disease even with a negative test result.
Cerebrospinal fluid testing can also help diagnose MS and rule out Lyme. But again some markers that can aid in identifying the presence of MS can also be found in cerebrospinal fluid of Lyme patients, including a specific group of proteins called oligoclonal bands. The 2019 second edition of Accurate Results in the Clinical Laboratory: A Guide to Error Detection and Correction states, "Oligoclonal bands may be found in 95 percent or more of patients with clinically definite MS. However, they may also be seen in central nervous infections (e.g., Lyme disease)."
A COMPLEX DISEASE
Vett Lloyd, a professor of biology at Mount Allison University who studies ticks and zoonotic diseases, says Sagle's case illustrates the complexity of Lyme disease and its impact on the body.
“The problem is once the bacteria goes through the body and the inflammation follows you can have almost anything happening,” said Lloyd. “That's part of the problem for people trying to diagnose it. You can't just say, ‘Aha, your big toe turned purple, clearly it's Lyme disease.'
“In Nova Scotia, particularly southern Nova Scotia, there should be a fairly high index of suspicion for Lyme disease.”
Lyme is also known to mimic symptoms in other autoimmune conditions including chronic fatigue syndrome and fibromyalgia.
Sagle's case also raises questions about whether doctors are adequately educated in recognizing the wide-ranging symptoms of the disease. Her diagnosis came after multiple visits to her family doctor and physicians at the Halifax Infirmary and Twin Oaks Memorial Hospital in Musquodoboit Harbour. None of them mentioned the possibility she had Lyme, said Sagle.
She did not have the stereotypical expanding rash symptom of the disease. Sagle says she was tested for Lyme only after her neurologist was convinced she had MS. He based his diagnosis on an MRI of her brain. In particular, the presence of white matter lesions, which is symptomatic of MS.
But similar brain lesions can also be a symptom of late-stage Lyme disease. Columbia University's Lyme resource website states that "MRI images in Lyme disease may appear similar to the demyelinated areas seen in the 'white matter' of the brain MRI of patients with multiple sclerosis."
But the neurologist didn't appear to consider other causes at the time, she said.
"He said I need to get on a disease modification therapy for MS as soon as possible."
‘YEAH, THIS IS SERIOUS’
She said the neurologist sent her for standard pre-treatment bloodwork, which includes testing for other potential causes of her symptoms. Testing at Queen Elizabeth II Health Sciences Centre microbiology laboratory confirmed she had Lyme.
Arriving at the diagnosis was an uphill battle.
It came after she was misdiagnosed with benign paroxysmal positional vertigo (BPPV). Her symptoms persisted and a subsequent appointment with an ear, nose and throat (ENT) specialist ruled out BPPV. She had a CAT scan that showed no abnormalities. She was put on a four-month waiting list for an MRI in New Glasgow because the waitlist in Halifax was a year and a half.
Sagle's break came in June when the ENT doctor followed up, letting her know there was a resident neurologist working at the Halifax Infirmary emergency department. She took his advice to go to the ER and see if she could be examined by the specialist in training.
Sagle ended up waiting 12 hours to see the resident neurologist who was also perplexed by her symptoms, she said. She pushed to get a second opinion from the senior neurologist on duty at the hospital that day. He also couldn't figure out what was wrong with her. Sagle also convinced the neurologist to expedite her MRI test to two weeks instead of four months.
“I am that person that fights for myself,” she said. “There are a lot of people who don't. Doctors were telling me that what I have isn't that serious. Well, I couldn't walk, and I still can't drive. I have young children at home, so yeah, this is serious."
She's frightened and frustrated by the uncertainty that comes with her double diagnosis. But Sagle's not frustrated with front-line health care workers. Rather, her concern is with those at the top of the province's health-care system who she says continue to subscribe to outdated methods of diagnosing and treating Lyme. As a consequence many Lyme sufferers are left behind.
She pointed to an incident in January 2019 when
Dr. Robert Strang, the province's chief medical officer of health, used his Twitter account in an attempt to debunk chronic Lyme disease. The condition describes cases of Lyme that remain after short-term antibiotic treatment.
Strang shared a tweet dismissing chronic Lyme disease as a pseudoscience supported by a cult following.
"When you have the doctor in charge of public health being so dismissive of people who are suffering from Lyme symptoms and aren't getting better, how can you expect the system to be any better?" she said.
After drawing public criticism, Strang responded saying he was not being dismissive of people "suffering with real and debilitating symptoms.” He maintained that chronic Lyme is not evidence-based and promotes potentially harmful treatment.
He never did delete the tweet.
The Chronicle Herald sent a list of questions to the health authority but got no response.