Last May, the Eagle ran a story on the controversies surrounding Lyme disease and diagnosis and Chronic Lyme Disease (CLD) — the disease caused by infected ticks, largely spread by migratory birds, which is said to turn into CLD when overlooked and misdiagnosed.
The story received tremendous response online and was one of the most-read stories of the year.
On Dec. 12, a third and final reading was given to Bill C-442, the ‘Federal Framework on Lyme Disease’.
It was passed unanimously by the Senate and now awaits Royal Assent to become law; although the bill was introduced as a private members bill — and these often don’t become law.
For the community of Lyme and CLD sufferers and researchers, this seems to be one small victory following years of being overlooked by the medical community — through what is referred to as dated, inaccurate testing (the western blot); the denial of the existence of CLD; and the emphasis that Lyme disease is only caused by one bacteria, Borrelia burgdorferi (the Lyme community maintains there are numerous bacteria species and strains carried on or in ticks that can cause Lyme).
But the battle is only beginning.
Jim Wilson, founder of CanLyme (the Canadian Lyme Disease Foundation), along with Green Party leader Elizabeth May, was instrumental in moving the bill forward; this is the first piece of Green Party legislation in Canadian history.
The bill will establish a framework for federal, provincial and territorial health ministers, members of the medical community, and patients’ groups to collaborate on awareness, diagnosis and treatment and research.
“It’s a foot in the door,” said Wilson, who contracted Lyme in 1991, but went through years of ineffective treatment before rounds of long-term antibiotic treatment earned him his quality of life back.
“A lot of people helped and deserve credit for that bill.”
He relapsed twice in the last decade, which he followed up with long-term antibiotic treatment.
Wilson’s two children contracted Lyme in 2001; his daughter was left with a permanent pacemaker but maintains a good quality of life now (following long-term antibiotic treatment) and his son passed away from health complications stemming from his battle with Lyme.
Wilson said CanLyme would fight hard to ensure that patients and their experts (researchers, professionals from the Lyme community) are at the table with medical professionals to collaborate on a better future for Lyme and CLD sufferers.
Jimmy Richards, 37, of the local bucking stock Richards family and 20-year-old Connor Ware, a former Cochranite who now lives in Three Hills, are two CLD sufferers that the Eagle interviewed last May.
Both live with very different symptoms, something that Wilson said the Lyme community has tried for years to make the medical community — who only recognize a limited list of symptoms as belonging to Lyme — realize.
Richards, who believes he contracted Lyme in 2006, was initially diagnosed with MS.
He was first tested for Lyme in 2007, which produced a negative result.
By 2012, he wasn’t convinced and began seeking naturopathic alternatives. He was advised to send blood samples down to the IGeneX Laboratory in Palo Alta, Calif. (at a cost of more than $1200).
“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.
Between a fundraiser held for Richards in 2010 that raised around $140,000 and some $40,000 of his own money, he has used these funds for naturopathic treatments; when the Eagle caught up with him last May he had just returned from Germany from a round of naturopathic treatments.
Examples of naturopathic treatment include IV vitamins, ozone, hyperbaric oxygen therapy and antimicrobial herbals.
Richards is now six weeks into his first round of long-term antibiotic treatment.
The medical community has historically fervently opposed long-term antibiotic use, but some doctors will treat patients in confidence.
Wilson said doctors who treat patients face very legitimate fears of harassment and even losing their medical licenses.
Richards continues to have severe mobility issues and muscle weakness. He has been on a cane full-time for nearly four years.
“I don’t know how many more options there are after this,” said Richards — who maintains that had the Canadian medical community been more proactive about testing him for Lyme disease through improved methods and an attitude of acceptance, his Lyme Disease would have been caught early on (before turning into CLD) and would have been better treated.
Once Lyme turns into CLD, it is more difficult to treat.
This is the case for Ware, who has been through seven years of every test under the medical sun — including MRIs and CAT scans, treatments and surgeries.
He has even been told that ‘it’s all in his head’ — something Wilson said is a battle for many living with Lyme and CLD.
Wilson said this mentality that dominates the medical community is directly related to the leading cause of death among those battling the terrible illness: suicide.
Ware tested positive for Lyme disease in February 2014, after sending a sample of his blood to the IGeniX Lab.
Ware told the Eagle in May that 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.
According to his mother, Jill McAllister-Ware, little has changed.
“Connor's condition remains basically unchanged. Sadly, this is par for the course, as he was misdiagnosed for over seven years and the road back to recovery without proper treatment provided will be a long and arduous one...if at all,” she explained.
“He is currently receiving limited treatment through a Lyme-literate doctor/naturopath and we pray for some improvement.”
McAllister-Ware acknowledged the passing of Bill C-442 as a small victory for Lyme sufferers across Canada; the hard work of May and Wilson; and a hope that Canada will become a ‘leader in education, research and successful treatment of vector-borne diseases’.
She did, however, reiterate the same sentiment expressed by every Lyme sufferer the Eagle has contacted to date: that the medical community has failed those who live with Lyme and CLD.
“I do not understand their (Alberta government) thinking, but then again, our Health Minister, Stephen Mandel stated, with a giggle, that there are only a handful of people in Alberta with Lyme and 'they didn't get it in our province’ — yet, I have a government lab report on a tick that was found here in Three Hills in July 2014, that tested positive for carrying Lyme. When will the ignorance stop?”
Janet Sperling is a PhD student at the University of Alberta researching the community of bacteria in and on ticks.
To date, Sperling has hundreds of ticks from across Canada. She is now interpreting all the DNA data, filtering out machine error and ‘detectability’.
“All of the ticks are carrying a multitude of bacteria,” she said, adding that this phase of her research would go on for another 18 months.
Her goal is to prove that provincial testing needs to be vastly improved to test for other forms of Borrelia species and strains that can cause disease in humans.
Sperling refers to her colleague Daniel Fitzgerald's 2012 master's thesis in animal science at the U of A's department of agriculture, food and nutritional science.
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.
“Enough of this writing off Lyme as not being able to be contracted in the province of Alberta.”
Alberta’s chief medical officer, Dr. James Talbot, told the Eagle in May that Alberta Health is ‘considering it a possibility’ that people could contract Lyme in the province.
The Eagle reconnected with Talbot, who said that Alberta Health Services followed up with every reported case of Lyme disease this year and that each of these individuals had travelled outside of the province to areas where Lyme is prevalent, leaving the province with no ‘smoking gun’ to provide evidence that any of these individuals had contracted the disease in Alberta.
He did say that as part of their provincial tick surveillance program, ticks have been found in the province containing the Borrelia burgdorferi strain.
Alberta had 32 reported cases of Lyme disease between 1998-2012. Members of the Lyme community, including Sperling and Wilson, feel these numbers are totally unreflective of the actual number of people living with Lyme and CLD in Alberta, in Canada.
Wilson said according to Health Canada, around two million people in Canada are living with ‘chronic illnesses of no known origin’ — including chronic fatigue syndrome, Parkinson’s disease, Lupus, fibromyalgia, Lou Gehrig’s, MS and Alzheimer’s.
“We know a percentage of these people are in fact misdiagnosed and are living with Lyme (or CLD),” said Wilson, referring to the medical community’s denial of the multitude of Lyme symptoms, refusal to accept the ineffectiveness of the western blot (which overlooks many different strains); and general attitude toward CLD as ‘absurd’ and an ‘almost childlike rationality’.
Wilson said a portion of the Humber River Hospital, slated to open in Toronto in the fall of 2015, would be dedicated to Lyme research, with a focus on ‘next generation’ (DNA) sequencing, which has ‘the ability to identify the entire micro biome from a single tissue sample’.
Wilson said to contact canlyme.com if you think you have Lyme disease.
He also said people can contact your local physician for western blot testing, in the event that you have contracted the strain the test is designed to catch — as early detection results in more effective treatment (through short-term antibiotic use).
