Life with Lyme disease has been nothing short of an uphill battle for Cochranite Nancy Doyle.
Life with Lyme disease has been nothing short of an uphill battle for Cochranite Nancy Doyle.
Given that May is Lyme Awareness Month, she wanted to share her story with the Eagle, as she is committed to spreading awareness about the disease caused by the bacteria Borrelia burgdorferi and largely spread by blacklegged ticks.
“I just want parents and the community to be aware of how unprepared we are to deal with this, ” said Nancy, who is unable to use her hands, is confined to a wheelchair and has not been able to stand for four years.
Commonly spread by migratory birds, Lyme disease has been dubbed as “the great imitator ” and symptoms mimic such illnesses as multiple sclerosis (MS), Parkinson's disease, fibromyalgia and chronic fatigue syndrome.
While early diagnosis of Lyme is usually effective when treated short-term with antibiotics, diagnoses and treatment of Lyme once the disease has set in and becomes chronic remains a grey area and sufferers are often left paying out-of-pocket for naturopathic and alternate therapies.
Often tick bites go undetected and the Lyme community maintains it is actually a minority of those bitten who have visible signs such as the “bullseye rash. ”
All Lyme community member supporters and sufferers interviewed by the Eagle for this article and previous articles maintain that Lyme disease is underfunded, misdiagnosed and that sufferers are left to fall through the health system cracks due to a refusal by the medical community to treat and test properly.
Nancy, 55, and husband John, who is also her fulltime caregiver, told the Eagle that they have been battling the medical community since 2001 - when numbness in Nancy's fingertips led to a misdiagnosis of multiple sclerosis (MS), which segued to years of debilitating treatments, a significant deterioration in quality of life and a frustrating absence of support from the medical community.
After years of “slight decline, ” the couple said Nancy's condition took a sharp turn some 10 years ago - which they feel was propelled by stress.
“She literally went from driving and doing everything herself to the next day - she was in a wheelchair and couldn't do anything for herself, ” said John, who went through a series of home care support workers until he was able to work entirely from his home office several years ago, and provide round-the-clock care to his wife.
It wasn't until 2012 that the couple, who have been married for 33 years, even thought about Lyme. Online research caused Nancy to stumble across a headline that said, “MS is Lyme. ”
Nancy inquired about whether she should rule out the possibility of Lyme with her doctor, who directed the Doyles to a Calgary naturopath who in turn ordered a Lyme test kit from the IGeneX Laboratory in Palo Alta, Calif.
Six weeks later, the Doyles learned that Nancy tested positive for Lyme.
“I didn't even know what Lyme was … I only took the test to rule it out, ” said Nancy, adding that following the diagnosis she and John “delved into researching Lyme. ”
Further investigation through a provocation test revealed that not only was Nancy carrying Lyme, but that she was also testing high for several metals in her system - including lead and mercury - which was “candy for Lyme. ”
Over the last five years, Nancy has been working with naturopathic doctor, Dr. Aparna Taylor with the Provital Health and Wellness Centre in Calgary where treatments include a combination of herbs, Chinese medicine and a strict diet.
'She also takes medical cannabis and CBD oils. The Doyles' research indicates that medical cannabis is combative to Lyme'
Nancy no longer takes any of the pharmaceuticals that had been prescribed to her for MS. According to the Doyles, the only successful MS treatments Nancy has undergone are the two controversial chronic cerebrospinal venous insufficiency (CCSVI) treatments that she received in the U.S. in 2010 and 2011.
She is currently undergoing physiotherapy and massage therapy, which she has been getting positive results from and is hopeful that she will walk again.
“I think that's what keeps us going - is walking into that neurologist's office and saying ‘you tried to kill me', ” said Nancy, who has been “so disheartened ” by the medical community and feels she has been shunned - like many other sufferers.
Out of pocket expenses for the Doyles are in excess of $100,000 - not an uncommon figure for Lyme sufferers whose treatments are not covered by the health care system.
Connor Ware, 22, currently lives in Three Hills, Alta., but used to live in Cochrane.
His first major symptoms of Lyme disease have been ongoing for 10 years and now include painful mobility issues, organ dysfunction, brain fog, light sensitivity, constant and debilitating pain and neurological issues such as memory impairment.
Ware has also battled the medical community and seeks naturopathic treatments - all out-of-pocket.
“There are many things in life that I can no longer trust myself to do, because I cannot remember what or how to do them, ” said Connor, adding that community support is critical.
Along with his mother and vocal Lyme advocate, Jill McAllister, the pair have started attending a support group in Red Deer, which has over 80 members and is hosting a free fundraiser and info night with guest lecturers on May 25 at the Red Deer Museum and Art Gallery beginning at 6:30 p.m.
Provincial testing and tracking of ticks has only begun to gain traction in recent years.
The Alberta tick surveillance program, which is primarily fueled by voluntary submission of ticks by veterinarians, began in 2007.
According to Alberta Health, ticks that tested positive for the Lyme-causing bacteria only began to show up through the passive surveillance program since 2013, all of which were found on animals.
All known cases of persons living in Alberta with Lyme disease were determined to have contracted the disease while “travelling outside of the province ”, as established by the province.
It is this logic that angers the growing Lyme disease community.
According to the Canadian Lyme Disease Foundation (CanLyme), a large percentage of persons living with Lyme are being misdiagnosed with other illnesses, often due to what is referred to as “archaic testing ” and a “severe lack of funding ”.
Jim Wilson is the president of CanLyme and together with Green Party leader Elizabeth May, was instrumental at getting the private member's bill on developing a Federal Framework for Lyme disease, Bill 442, moved to royal assent in the fall of 2014.
The draft framework has received considerable backlash from the Lyme community. According to Wilson, Lyme sufferers and their care providers were not brought to the table and the draft is a result of input from “doctors behind closed doors ”.
“We are proceeding on the basis that the federal government has no true interest in putting a mechanism in place to protect people from Lyme disease, ” said Wilson, who implores the public to “demand of your MPs and MLAs that the research dollars have got to start focusing on the human condition of Lyme disease ”.
According to Health Canada, 3,853 cases of Lyme disease were reported between 2009-2016. The Lyme community maintains that Lyme is vastly under-reported.
The Centre for Disease Control in the U.S. estimates there are at least 300,000 cases of Lyme in the U.S. and that these numbers are also under-reported. All sources indicate Lyme is on the rise in North America.
