Lyme disease on the rise; diagnosis remains medical grey area

Lyme disease.

What was once thought of as a rare disease contracted by hikers in the deep woods in certain regions, has erupted into a controversial health battle throughout Alberta and across North America.

According to CanLyme (the Canadian Lyme Disease Foundation), Lyme is ‘an inflammatory infection that spreads to humans through tick bites'.

Largely spread by migratory birds and often undetected once contracted, the consensus among researchers and health authorities is that Lyme disease is on the rise in Canada.

But diagnosing persons living with Lyme - and what Lyme can become if it goes undetected and untreated for a period of weeks, months or even years, chronic Lyme disease (CLD) - remains a grey area, as does the acknowledgment by the medical community over the existence of CLD.

Sufferers of CLD, such as local Jimmy Richards, 36, of the bucking stock Richards family and Connor Ware, a 19-year-old former Cochranite who now lives in Three Hills, Alta. are left without a formal diagnosis by Alberta Health, left to seek out treatment options on their own, funded by the generosity of their friends and family.

The problem for sufferers of CLD in the province of Alberta is that according to Dr. James Talbot, chief medical officer of health at Alberta Health, “There are no known cases of Lyme contracted in the province of Alberta ”.

While a high percentage of those who contract Lyme disease show signs of a ‘bullseye rash' within the first 30 days of being infected, the symptoms vary and often remain undetected for a lengthy period of time - becoming CLD; caught in the early stages, Lyme is highly treatable (through short-term antibiotic treatment).

The symptoms associated with CLD vary from flu-like symptoms to a debilitating list that ranges from brain fog, light sensitivity, chronic joint pain, loss of balance and mobility and facial paralysis, to severe problems related to every system of the body.

As these symptoms are also associated with other illnesses, such as chronic fatigue syndrome, fibromyalgia and multiple sclerosis (MS), to name a few, official diagnosis remains an issue.

And sufferers such as Richards and Ware have been lost in the cracks of the health care system.

“I know I have chronic Lyme disease, ” said Richards. “You don't care until it happens to you or someone you know. ”

Initially diagnosed with MS in 2006, Richards said he was tested for Lyme in 2007.

“They told me ‘no'. Whatever they told me at that time was gospel to me - I didn't know any better. ”

Richards said by 2012 he began seeking alternative solutions through naturopathy. That was when he was advised to send blood samples down to the IGeneX Laboratory in Palo Alta, Calif. (at a cost of more than $1,200) to test for Lyme.

“They told me it came back so positive and that if I was an American I would have had to report it to the Centre for Disease Control (CDC). ”

The CDC has around 30,000 reported cases of Lyme disease and now estimates that this is only one-tenth of the actual U.S. Lyme sufferers.

Richards reported the findings to his family doctor. He was advised soon afterwards that the test was a ‘false positive', receiving “cryptic calls from Alberta Health Services about where I've been ”.

Since then, he has continued with naturopathic therapy at the Nardella Clinic in Calgary and recently returned from a two-week trip to Germany, where his treatment included antibiotics, sedation and being placed under a heat lamp to kill bacteria.

A fundraiser held in February 2010 raised nearly $140,000 for Richards; he used these funds, as well as in excess of $40,000 additional dollars to fund his treatment so far.

Richards has been on a cane full-time for three years. His mobility has been severely compromised by his illness.

“We've been treating Lyme disease for five years now, ” said Dr. Jennifer Nardella. “At first we diagnosed a few patients using the testing in the States and shortly after, I myself was diagnosed. We quickly learned how many people were suffering from Lyme here in Alberta and were having trouble finding help and treatment. ”

Examples of naturopathic treatment include IV vitamins, ozone, hyperbaric oxygen therapy and antimicrobial herbals.

“The standard in Canada is to test (for Lyme) using the two-tier system, which in CLD can result in false negatives and miss people who actually have the disease but may no longer mount an immune response after years of infection, ” added Dr. Meghan Haggarty, who also practises at the Nardella Clinic.

“Alberta is worse off than provinces such as B.C. and Ontario, as it is not recognized to be a problem in our own backyard. ”

The battle for Ware has consisted of six years of a rigmarole of misdiagnosis, MRIs and CAT scans, resulting in a cannon of treatments and surgeries.

Ware tested positive for Lyme disease in February 2014, after sending a sample of his blood to the IGeniX Lab. Ware said his symptoms have accelerated to the point of intolerability over the last year - including light sensitivity, brain fog, chronic headaches, joint and jaw pain and vertigo.

“The best thing I could see happening is for people to actually know about this disease, ” said Ware, who had to conduct an interview through email, as his jaw pain and swelling was too severe for him to speak.

“Connor should have been diagnosed properly years ago, ” said single mother Jill McAllister-Ware, sharing her family's ongoing battle with the medical community and being repeatedly shrugged off by doctors.

“Although we never saw a tick on him, the method of diagnosis is supposed to be clinical, based on symptoms, not a blood test. ”

A recent fundraiser in Three Hills has topped the Ware's medical fund to around $13,000. This will cover an estimated two weeks of treatment at a clinic in Wichita, Kan.

Ware's family has an online fundraising platform available at gofundme.com/7zrnhk.

Outside of naturopathy, the most common treatment of CLD is long-term (several weeks) of antibiotic treatment, available at a handful of clinics in the U.S. and in Europe.

This is what has fueled Janet Sperling's research at the University of Alberta (U of A).

Sperling is a PhD student in biological sciences, who is studying the community of bacteria in and on ticks.

“Some of the Borrelia species will be detected by the tests used for people at the Alberta provincial lab (Borrelia burgdorferi strain B31) and other Borrelia species won't be detected (Borrelia miyamotoi). My research aims to describe the bacteria in the ticks so that we can better target the tests for the humans. ”

Sperling refers to her colleague Daniel Fitzergerald's 2012 master's thesis in animal science at the U of A's department of agriculture, food and nutritional science.

In a nutshell, his research found that 16 out of 22 ticks that tested positive for Borrelia burgdorferi, the causative agent for Lyme disease, were found on dogs that had not travelled outside of Alberta.

“Dogs are picking up Lyme in Alberta and vets are treating dogs here for Lyme, ” explained Sperling, adding that the notion that Lyme cannot be contracted in Alberta is “just silly ” and is “very much a political issue ”.

Sperling, only one year into her research, aims to prove that provincial testing needs to be vastly improved to test for other forms of Borrelia species that can cause disease in humans.

Sperling's son, now 24, was diagnosed with Lyme in 2004 and seems to have been in recovery since 2007.

Talbot said of the 2500 people tested for Lyme in 2013, 19 tested positive and all of those individuals had travelled outside of the province.

With a focus on awareness and prevention, Talbot said Alberta Health is “considering it a possibility ” that people could contract Lyme within the province.

Alberta had 32 reported cases of Lyme disease between 1998-2012.

Sperling estimates that the actual number of Lyme sufferers in the provincial vastly exceeds this numbers and may include persons diagnosed with other illnesses.

To learn more about Lyme disease, visit canlyme.com.

To learn more about Alberta Health's ‘Tick Surveillance Program' (which has been extended into 2014), visit health.alberta.ca/ticks.

May is ‘Lyme Awareness Month'.