Unravelling the mystery of Lyme disease: Why Canada needs to do more

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Rian Michelsen is a rising star. Fifteen years ago, he was the toddler who burst out from behind the curtains singing Elvis’ Viva Las Vegas. As a young boy, he played the lead role in Oliver in his birthplace of Bermuda, before moving with his family to Toronto five years ago.

Now, as a 17 year-old high school student, he’s a gifted singer and dancer, and attends the renowned Etobicoke School of the Arts. He works as a professional actor and has appeared in numerous high profile television programs, including Murdoch Mysteries and Flashpoint. In short, Rian is more determined than ever to realize his dreams. But last year those dreams were almost destroyed by a debilitating disease that went undiagnosed for several months.

“He couldn’t get out of bed, he felt his brain shaking at night, had floaters in his eyes, he couldn’t walk and every time he stood up he felt like he was going to fall over,” explains Tanis Michelsen, Rian’s mother.

A series of blood tests revealed that Rian was reactive to the Epstein-Barr virus, had a very low white blood cell count and was low in vitamin B12. His family physician suggested Rian take vitamins and rest. He did that but still didn’t feel well enough to rehearse or perform and came home every day after school exhausted.

“We were frustrated and upset going to many specialists, having blood tests, MRIs and not getting any answers,” says Tanis. She remembers one specialist saying to Rian, “If you don’t want to go to school, you need to have a better reason.” And another specialist who, although extremely kind, professional and caring, chalked Rian’s symptoms up to a “severe case of anxiety.”

“Here is my son who has always been so grounded and active; he had never been run down like this (or anxious for that matter), so to see him not be able to participate in school and have no explanation for it was awful. Trying to find out what was happening was impossible.”

That’s when Tanis Michelsen decided she needed to look beyond the Canadian medical system.

After hearing about Lyme disease, she took the advice of a friend and contacted Dr. Maureen McShane – a family physician and Lyme disease survivor who lives in Montreal and specializes in treating patients with Lyme disease, across the border in New York. Given the prevalence of the disease in Canada and that Dr. McShane has a practice of almost 2000 patients (ninety per cent of whom are Canadians seeking diagnosis and treatment for Lyme), it wasn’t surprising Tanis had to wait a few months to get an appointment.

symptom listIn the meantime, “I was given Dr. McShane’s ‘Lyme disease symptom list’ to compare against what Rian was experiencing. Rian took one look at the list and said ‘Oh my goodness, Mom, this is it; this is exactly what I’m feeling.’ ”

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In December 2014, on her own initiative, Tanis ordered and paid for testing from IGeneX – an immunology laboratory and research facility, specializing in Lyme disease and associated tick-borne illnesses in Palo Alto, California, so she could find out if Rian indeed had the disease.

Three weeks later she received the news that Rian was positive. Although she had to wait for Dr. McShane’s analysis to understand what the ‘positive’ results entailed (which protein bands were positive), the Michelsen’s were relieved they had a diagnosis, and a starting point.

As she was waiting for Rian’s results and the appointment with McShane, Tanis was desperate to get Rian the help he needed before it was too late.

“I found another physician in the U.S. – Dr. Marty Ross – who published his protocol online. He treats Lyme disease with antibiotics and herbal supplements so I convinced a friend who is a pediatrician to put Rian on doxycycline for his acne. I also followed Dr. Ross’s herbal supplement plan. It made a difference. His head cleared enough so he could hang out with his friends.”

While the protocol helped Rian, he still had grave difficulty coping with everyday life.

Tanis was also having difficulty coping. She had a husband, two young daughters – one of whom was so sick that year that she missed close to one hundred days of kindergarten – a new business plan in the works and was experiencing a flare up of her symptoms from her Fibromyalgia that she had struggled with on and off since her teenage years – something that was finally diagnosed in her early twenties, she says.

Tanis says what brought her great comfort was the many other Canadians with Lyme disease, near and far who were willing to listen to her battle and offer advice and support. They too had similar experiences and struggles with obtaining diagnoses and treatment and understanding the complexities and cost of going across the border for help.

In January 2015, Tanis received great news: Dr. McShane had a last minute cancellation and could see Rian the following day. Together, the Michelsen family drove seven hours to get Rian the medical help and support he needed.

But that’s not where this story ends. It was only the beginning for the Michelsen family who’s endured a lifelong struggle with Lyme disease that may not be over anytime soon.

A few days before travelling to Plattsburgh, Tanis connected with a mother in California whose child was diagnosed with Lyme disease. When she mentioned her Fibromyalgia was flaring up because of the stress of Rian’s illness, the mother on the other end of the phone went silent, and a few minutes later, suggested that Tanis may have been misdiagnosed so many years ago. Tanis Michelsen could have Lyme disease too.

“It was like a bomb went off in my head, explains Tanis. “All of a sudden, my mind was going crazy. I was recalling the fractures each year Rian had between ages five and fourteen. I remember saying out loud: Rian has had Lyme disease his whole life and he got it from me.”

The revelations about her children continued. Her youngest daughter, Lyla, 7, has been sick her whole life. Lyla was colicky as a baby, and when she was old enough to communicate, she suffered from daily stomach pain, nausea and chronic diarrhea. She also had constant ear infections – almost one every six to eight weeks from age two to age six. She had pneumonia more than once, and persistent dark circles under her eyes.

And while Tanis, herself, thought she was having heart palpitations from the stress of Rian being so sick, she realized that she too was sick – possibly sicker than anyone in her entire family.

“I’ve had symptoms since I was fourteen that started with headaches and a dreamy, foggy feeling. My headaches were so bad that I sought out cranial therapy which really helped me. Up until this year, I spent a lot of time treating my ‘so called’ Fibromyalgia,” Tanis explains.

According to Dr. McShane – who is caring for the entire Michelsen family (Tanis’ husband Brett and their middle child, Jade 11, also tested positive for Lyme) – studies have shown a possibility that Lyme disease can be transferred from a mother to her children in utero and between spouses through sexual intercourse. However, the U.S. Centers for Disease Control (CDC) says there is no credible scientific evidence that Lyme disease can be spread from person-to-person through sexual contact. Attempts to demonstrate sexual transmission in infected animals have all failed, and there has not been a single, adequately documented case of sexual transmission of Lyme disease reported in the scientific literature. The sources listed on their website are dated from 1989 through to the most recent in 2001.

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While the Public Health authorities don’t agree that science has demonstrated sexual or in-utero transmission, doctors who specialize in Lyme disease, like Dr. McShane are seeing evidence that suggests it is possible.

While the Michelsen’s case is atypical, it’s not as uncommon as one might think and is an excellent example of the struggles Canadians are experiencing trying to get answers, testing, diagnoses and treatment for Lyme disease.

As concern about Lyme disease gains momentum and awareness spreads, experts want the Canadian health care profession to realize that Lyme disease is a serious threat to public health and Canada needs to improve its testing in order to help sufferers.

Health care professionals need to have Lyme disease on their radar, even if they are in urban areas. “It’s not all about ticks, it’s about co-infections like Babesia and Bartonella – and over twenty more strains of bacteria that exist in nature. Mosquitos are carrying Lyme as well,” warns McShane. No matter where you go in Canada, there is a possibility. And if you go to the Dominican Republic, sand fleas are carrying Bartonella.”

The most common tick bites, she says, come from the larval nymphs about the size of a poppy seed. When they hatch they are in dark, shady, damp areas; on squirrels, rabbits, cats that are hiding and on little birds – robins are known to carry Lyme too. These creatures carry a lot of bacteria.

“The underlying problem is that ticks carry many infections (probably because they feed on rodents) and some of these can be deadly. All of nature can be a problem,” says McShane.

Dr. Ben Boucher, a retired general practitioner in Halifax, who practised complementary medicine for over thirty-five years and cared for over two hundred patients with Lyme disease (risking the loss of his medical license in the process) says co-infections and acknowledging that they exist is an extremely important part of the Lyme puzzle that many physicians in Canada are unwilling to accept.

“There is a lot of Bartonella out here in the ticks in Halifax. And with more geese, insects travelling, an increase in temperature, environmental possibilities and climate change, we need more tick studies. We need to do more studying of insects that might be relevant to vector transmitted infections; and even before that, we need to significantly improve human testing.”

In 10 months of searching for answers, Tanis Michelsen was not once offered a Lyme disease test for her son Rian.

According to many experts and Lyme disease advocates, testing for Lyme disease in Canada is unreliable and inadequate.

“The cold hard fact is that in Canada, serology is failing us; showing only 50 per cent positive results in early Lyme disease cases,” says Dr. Ralph Hawkins, General Internal Site Lead at Calgary’s South Health Campus Hospital and a Clinical Associate Professor of Medicine at the University of Calgary. “But, interestingly, says Hawkins, “if we take these tests and interpret them in a different way, I believe that we would be able to identify more Lyme disease cases. I think we can be a lot smarter in Canada.”

Hawkins says he recognized years ago that there is a substantial gap in the care of Lyme disease patients. People are told they don’t have Lyme but are still suffering with symptoms.

Testing for Lyme disease in Canada is a two-tiered approach; a screening test, either an EIA (Enzyme-linked Immuno Assay) or an ELISA (Enzyme-linked Immuno-sorbent Assay) is followed by a confirmatory Western Blot. Though the Western Blot has been shown to be both more sensitive and specific than the ELISA, if you don’t test positive on ELISA, the Western Blot is not performed.

According to the International Lyme and Associated Diseases Society (ILADS), the ELISA screening test is unreliable. The test misses 35 per cent of culture-proven Lyme disease and this amounts to less than 65 per cent sensitivity, as not every Lyme patient is culture-positive. ILADS advocates that a screening test should have a sensitivity of 95 per cent or greater, and therefore the ELISA is unacceptable as the first step of a two-step screening protocol.

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“In Canada, all of our provincial labs have gotten together to agree on how they are going to report the test results. A positive ELISA test will be sent to the national lab and the only report we get in Canada is that it’s negative or positive, nothing else; we are just given the interpretation of the lab according to the CDC criteria, says Hawkins.”

Unlike the Canadian lab that does not report the results, the American lab will provide the results of the ELISA and the Western Blot tests and will communicate which bands are negative and positive so physicians can interpret these studies and determine if this is positive by the CDC standards. Hawkins says it’s important to note that there are bands in a Western Blot test that are “so highly specific in the Lyme disease organism, they are very, very diagnostic.” In other words, some of the bands will only be positive if you have Lyme.

Jim Wilson, President of the Canadian Lyme Disease Foundation (CanLyme), also affected personally by Lyme disease, says testing in Canada “has far too many false negative results,” something that is well established in the medical literature, and acknowledged by Health Canada.

“The protocol is unable to detect all the various genotypes of the Lyme bacteria, limited further because the tests are antibody tests and it takes several weeks for humans to create antibodies at detectable levels,” Wilson adds. “By then the organism will have disseminated out of the blood system making diagnosis and treatment more difficult. Late stage serology is problematic as well.”

Wilson is urging Canadian health care professionals to “recognize that current tests are inadequate, and that a negative test result says very little about whether you have Lyme disease or not. Specialists who refuse to see patients with suspected Lyme disease unless they have a positive two-tier Canadian test for Lyme disease are basically telling patients they do not care what is wrong with them. This ‘we won’t see you because you mentioned Lyme disease and you do not have a positive Canadian test’ is a denial of ethical healthcare. The science is far too clear on the failure of the current testing model for that denial of care to be allowed within our health care system. The specialists must work side-by-side with our experts to explore this rapidly growing health threat.”

Both Boucher and McShane say that part of that working ‘side-by-side’ is looking at the patient as a whole and analyzing the clinical symptoms they’re presenting.

“You have to be aware that if you get this [Lyme disease], it’s very hard to diagnose,” says McShane. “People think that when they have Lyme that they will have bull’s-eye rash (also called “erythema migrans”). It does not need to be a target lesion. It can be a big circular rash that is expanding. It’s also important to note that less than 50 per cent of people even have the rash.”

That’s why McShane’s symptom list is so long. Boucher has a similar symptom list. Both experts say that many of the symptoms – for lack of being treated – can be categorized as “chronic Lyme symptoms.” In fact, it is chronic Lyme disease and the lack of acceptance of chronic Lyme by the Infectious Diseases Society of America (IDSA) that is at the very heart of the heated Lyme controversy in Canada.

“The IDSA guideline is what Canadian physicians follow,” says Boucher. “They rely on the two-tiered testing system and they don’t want to treat clinically. Those guidelines, drove me into retirement after thirty-five years. The IDSA has denied so much that they’ve backed themselves into a corner. They admit that if they treated more clinically instead of following these antiquated guidelines they could face liability. They also didn’t recognize co-infections.”

“Doctors cannot publish articles in highly reputable journals like The New England Journal of Medicine on chronic Lyme because they aren’t accepted,” adds McShane. The journals can’t publish anything that’s outside the standard of care. The infectious disease doctors are in a bind because the standard of care is to not treat chronic Lyme disease.”

In the United States, state by state, they are passing laws to protect the doctors who are treating chronic Lyme disease, McShane notes. In Canada – there are doctors who, on their own, became aware of the fact that there is such a thing as chronic Lyme, many of whom put their medical licenses in jeopardy to prescribe “much needed” long-term antibiotics to their patients.

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Treatment should be based on the stage of infection. Until recently, many doctors in Canada tended to prescribe only one round of antibiotics, irrespective of the stage of infection. However, current research suggests that a single course of antibiotics is often insufficient for treating Lyme disease, especially if the infection has been untreated for several months.

Chronic Lyme disease causes continuing symptom flare-ups. For many people, symptoms can also be extremely debilitating and may get progressively worse when a patient has been infected for more than a year before seeking treatment. When a patient is diagnosed with Chronic Lyme disease, doctors work to develop an extended treatment plan. Treating Chronic Lyme can last months, years or even longer.

Melanie Wills is all too familiar living with untreated symptoms – for years. Wills was a child when she broke out with an unexplained rash. A couple months later, she became unwell with fevers and fatigue. The disease even made its way into her thyroid. She recalls having to go on a reduced academic schedule and missed many months of school.

“I have had Lyme disease for two decades,” says Wills, a PhD student at the University of Guelph, studying molecular and cellular biology, who also found McShane and only recently began treatment for her disease.   “My disease has been labelled various things along that journey and doctors in Canada didn’t really know what to do with me. I was told I had Chronic Fatigue Syndrome and Fibromyalgia. I couldn’t tell you the number of specialists I saw over the years. Every part of my body has had its own doctor.”

Joanna Johnston, an Occupational Therapist from Toronto, feels Wills’ pain.  Although her journey to diagnosis and treatment was not as long, she experienced similar frustration trying to get answers for her unexplained and prolonged symptoms over a three-year period.  “In 2009, I was bitten while vacationing in the Thousand Islands.  I broke out in a rash and my family doctor actually suspected Lyme disease.  He prescribed one week of antibiotics and did the Lyme test, telling me I would be “covered” either way.”

Johnston tested negative for Lyme and continued to experience symptoms which included intense fatigue and severe gastrointestinal issues.  Then, in 2011 while at a cottage in Georgian Bay, she was bitten again.  The bite was on her finger but she didn’t develop a rash.  Her finger remained stiff and swollen for a few days but then went away.  However, her symptoms intensified. She experienced problems with her vision, suffered from nausea, facial pain, chills, headaches, extensive irritability and increasing pain and stiffness in her neck.  She was off work for almost four months.

“When I returned to my family doctor, he diagnosed me with Fibromyalgia and recommended I think about taking medication for my “anxiety” and other mental health issues I may be experiencing.  He also recommend a support group so I could talk to other people about my “anxiety.” It was really frustrating.  I am so thankful that I heard about Dr. McShane when I did.  Seeking diagnosis and treatment from her has changed my life and I am feeling much better.”

“I feel sorry for these doctors in Canada,” says McShane. “People are coming to them and are desperate but they can’t do anything. They are stuck in this position and can’t do anything to help these people. But it’s not their fault.”

McShane adds that when a person begins developing chronic symptoms, they are put into a category; they are depressed, have too much stress in their life etc…They end up with “many diagnoses – Chronic Fatigue Syndrome, Fibromyalgia to name a few – and as the symptoms progress they get sent around to different specialists. Many of these chronic infections are associated with bacteria but underlying the diagnoses are infections.”

And just like Tanis Michelsen, who realized her Fibromyalgia wasn’t really Fibromyalgia, McShane says because of chronic Lyme disease, people are starting to realize that diseases like Multiple Sclerosis (MS), ALS and Chronic Fatigue Syndrome – to name a few – need a hard re-examination and people who suffer from these ailments should be tested for Lyme disease.

“You may have other things. MS is more of an autoimmune disease due to underlying bacterial infections. When you start looking at it that way, a twenty-seven thousand dollar a year medicine for MS isn’t really needed,” she says.

McShane says that many people aren’t aware that “Lyme is one of the smartest bacteria ever born.”

Spirochaete bacteria (Lyme) operate differently, she says. They are flagellated and move. They are corkscrew-shaped and have the ability to coil themselves up and lay down a surface protein and then hide in tissues. They are not recognized in your body as foreign. And they are even known to be resistant to antibiotics, that’s why Lyme literate medical doctors (LLMDs) promote an antibiotic regime for longer than the Canadian standards of care permit – over 21 days.

The Lyme disease dilemma in Canada is a complicated debate that seems to be garnering consistent attention, even outside of the spring and summer months. But what research is being done to decipher the Canadian Lyme landscape and what are the most important points for Canadian health care professionals to know right now?

Dr. Vett Lloyd, a Professor of Biology at Mount Allison University in New Brunswick has spent the last four years doing extensive research on ticks and Lyme disease, mostly in New Brunswick, after she herself acquired Lyme disease. Lloyd says that New Brunswick is an area in which ticks are becoming established so it gives researchers an excellent opportunity to study how this happens on a local level, which can complement the national tick surveillance programme.

“We’ve also been looking at Lyme disease in dogs,” adds Lloyd. “Dogs have been used as a sentinel species for Lyme disease because they live in the same communities as people.  So if a dog gets Lyme disease that means that the people in the same household, for example family members who walk the dog, are at risk of contracting Lyme disease. We found that dogs throughout the province had contracted Lyme disease, showing that the risk is everywhere. The rate of Lyme disease in dogs has increased drastically, more than six fold, since it was last monitored seven years ago, which has serious implications for human health.”

Lloyd says dogs are at higher risk of getting ticks on them than people because dogs are hairier, shorter and in most cases are more likely than people to be running through long grass and forest. This means that veterinarians see a lot of ticks on their patients. In the veterinary community, an in-clinic test (that takes 10 minutes) is often used to detect Lyme disease. This means that when a dog is sick, the veterinarian and the client can get the test information very quickly and decide on the spot about how best to treat the dog’s symptoms.

“This is the same general type of test used in human medicine but unlike human medicine a positive result on this ELISA test is considered sufficient evidence to treat the dog, no second tier testing is required. Veterinarians are also often quite open to treating based on clinical symptoms,” says Lloyd.

When it comes to people, Lyme disease seems to be more multilayered and a lot more complex. Nevertheless, Lloyd concludes that her research is proving what she already knew: “Lyme disease is a rapidly emerging and serious problem for all regions of Canada,” says Lloyd.

“To solve the problems associated with preventing as many new cases as possible, diagnosing those who have already contracted the disease, and then effectively treating those with the infection, be it recent infections or long standing infections, we need the medical community, the biomedical research community, the veterinary community and the patient groups all working together. This sort of concerted and cooperative approach has resulted in tremendous progress in dealing with other diseases such as HIV/AIDS, breast cancer, prostate cancer etc.”

Jim Wilson is also advocating for people to work together to achieve goals when it comes to fighting this rapidly emerging phenomenon. “We have no infrastructure to deal with [Lyme disease]. Education of medical professionals is limited, and reflects very controlled messaging from those responsible for disseminating educational material for the past decades. Patients, and their experts must be involved in the medical educational material output.”

“In fact, there’s a lot more Canada needs to do and important information that health care professionals in Canada should be aware of,” adds McShane.

Years ago, doctors learned about medicine by studying syphilis and how it affected the heart, brain (to name a few systems). In medical school, adds McShane, they need to look at resident bacteria.

She warns that medical professionals shouldn’t always trust what’s in their journals; that there is more to the story about chronic Lyme disease than what doctors are getting from their journals. “There is most certainly a way to treat for chronic Lyme disease and other neurological disorders,” McShane adds. “And once doctors learn how to do it is not difficult to follow patients.”

McShane says she is the “last stop” for many Canadian patients – many of whom have seen at least three specialists by the time they come to see her. She had one man who had seen twelve neurologists and had over five MRIs before he found McShane.

“In Canada, the cost of these patients is astronomical,” adds McShane. “And the best example I have of that is my own experience. When I got sick, I got a great response. I went to many Canadian hospitals and clinics. I didn’t get a diagnosis of Lyme disease and overall, I must have cost the Canadian health care system approximately thirty thousand dollars,” she explains. “People wanted to help me but the problem was they weren’t looking for Lyme. There’s a controversy because of Lyme disease and the standard of care that’s allowed in Canada – my symptoms didn’t fit the guidelines that were out there about Lyme. I was told, I was probably just in early menopause. This is what happens to people all the time.”

While Canada waits for the implementation of leading Lyme disease innovation and research; revised infectious disease guidelines and the fearless leadership in the Green Party of Canada’s Elizabeth May – as she continues to fight for a better framework for Lyme disease in Canada through Bill C-442 – McShane says she advises Canadians suffering with Lyme disease to “follow your heart.”

“Know that you don’t trust anybody, you go along with what you feel and you just keep going. Trust yourself. Know that even if you’re living in a city doesn’t mean that you can’t get a tick bite.”

Tanis Michelsen is following her heart every day. With all five members of her family, including herself, on various medications for chronic Lyme disease, every day presents a new challenge. Every day is an opportunity to learn something new about her family.

Her daughter, Lyla, had food sensitivity testing a couple of years ago and tested positive to fifty foods. Now that she’s being treated for Lyme disease, almost all of those food sensitivities have disappeared, along with the constant stomach pain, nausea and diarrhea.

“Dr. McShane explains that Lyme literate doctors and paediatricans believe Lyme bacteria gets into the stomach lining of the little ones and causes all of those issues.  It’s amazing how it has manifested differently in every one of my kids,” says Tanis.

Despite the tremendous ordeal the Michelsen family has faced, and continues to battle, Tanis says there’s a ‘one-of-a-kind’ gift that’s comes from this terrible situation.

“We all know how to deal with each other’s challenges and we are going through it together. Yes, it’s extremely unfair that all five of us are ill, and it’s also frustrating that doctors don’t understand bacteria. But I take so much comfort in knowing that the five of us know how each other feels and we support each other – each other is all we have.”

As for Rian Michelsen, he’s back at school and poised on centre stage, pursuing his acting dream every chance he gets, with more determination than ever.

“The silver lining for Rian is that he now has his own barometer,” says Tanis. “His strength and persistence after what he’s experienced will no doubt provide him with more depth as a performer. I am so excited for his future.”