Bancroft council has joined a growing list of municipalities that are petitioning the province to improve awareness, detection and treatment of Lyme disease in Ontario.

Lyme Disease Association of Ontario (LDAO) member Eleanor Cox, who has suffered chronically from the illness since 1989, shared her story during Bancroft's Nov. 8 council meeting, and asked the town to petition the province. Cox is one of 2.5 million people in Ontario who have put pressure on the provincial government to update its Lyme disease protocols.

"I wouldn't want anyone to go through what I have," she said, adding, "It's almost like a recurring malaria type illness."

Cox talked about her own experiences and educated those present about how easy it can be to contract the disease, and how hard it can be to be diagnosed and treated.

According to the LDAO, lack of awareness and misdiagnosis of the disease is a major problem, and Ontario doctors have shockingly limited knowledge about chronic Lyme disease.

"I had to go to the U.S. to find a doctor who knew something about it," Cox told council. "I hope I can get your support to get the government on track."

Representatives from the association say chronic Lyme disease is regularly misdiagnosed because it mimics a variety of other diseases and neurological disorders including autism, arrhythmia, arthralgias, arthritis, attention deficit disorder, autoimmune diseases, chronic fatigue syndrome, fibromyalgia, depression, multiple sclerosis, Parkinson's, schizophrenia, sleeping disorders, Alzheimer's, Lou Gehrig's disease, irritable bowel syndrome, scleroderma, peripheral neuropathy, lupus, and more.

Case in point, Cox's doctors were advising her to undergo heart surgery before her mother happened to see a notice about Lyme on the back of a magazine and recognized the symptoms. Cox says she knows other people who actually underwent such surgeries completely unnecessarily because they had also been misdiagnosed. Others have been treated for diseases they don't have, sometimes for decades.

"In the end we are not being healed, we're just being medicated," said Cox.

"The Ministry of Health is down-playing it," she added.

Lyme disease is an infection caused by the bacterium Borrelia burgdorferi, which is spread by blacklegged ticks, also known as deer ticks. When an infected tick feeds on a host it regurgitates fluid containing the bacterium. According to Public Health Ontario, a tick must be attached for at least 24 hours for transmission of the bacterium to occur.

The Public Health Agency of Canada says people can't spread Lyme disease to each other, however the LDAO disagrees. The association says Borrelia burgdorferi can cross the placenta during pregnancy, may be transmitted from an infected mother to an infant during breastfeeding, and can be transmitted through a blood transfusion. Additionally, sexual transmission is probable, according to the LDAO, as Borrelia burgdorferi has been identified in human semen.

Certain areas of the province are considered high risk with an established tick population, but there is still the potential to be bitten by a tick outside of these high risk areas. The LDAO reports that, of those tested, about 12 per cent of Black-legged ticks showed positive results for Borrelia burgdorferi.

"We are not aware of any studies of ticks conducted in North Hastings," said Dave Dodgson, Manager of the Environmental Health Department at the Hastings and Prince Edward Counties Health Unit.

"As part of our passive surveillance program, ticks removed from a human host may be submitted to the health unit for identification and testing," Dodgson said, adding, "We have not received any Black-legged ticks from the North Hastings area."

According to Public Health Ontario, Lyme disease cases are typically reported from April to October, with an average of about 38 confirmed cases in the province each year. However, it is impossible to know how many unreported or undiagnosed cases there are at this time. This is partially because the window of opportunity for detection is small: it takes up to six weeks for antibodies to develop against Borrelia burgdorferi in detectable numbers, and after 8 weeks the antibodies subside.

Ontario currently follows the diagnostic and treatment guidelines provided by the Infectious Disease Society of America, but according to the LDAO, the tests used to detect Lyme disease in Ontario result in false negatives 45 - 95 per cent of the time. The association says there are specific tests, including the Western blot test, that are more reliable, but they are not routinely used in Ontario, and they are not covered by the Ontario Health Insurance Plan (OHIP).

An unfed adult tick is roughly the size of a sesame seed, and will increase to the size of a pumpkin seed when fully engorged with blood. Because they attach themselves in discreet places, including the hairline, armpits, navel, groin, and behind the knees, they often go unnoticed by their hosts. 85 per cent of people do not remember being bitten, according to LDAO.

"They're so tiny that you don't even know you've been bitten," said Cox.

Public Health Ontario recommends wearing light-coloured clothing to increase visibility of ticks, as well as avoiding shrubs or grassy areas, wearing long sleeves and pants, tucking pants into socks and using a bug repellent containing DEET during peak months to avoid tick bites, and checking for ticks after potential exposure.

Tick removal is best performed by a physician because inexperienced removal can cause the tick to regurgitate more fluids into the host.

Contrary to popular belief, ticks do not burrow into their hosts. They do, however attach themselves with backward facing barbs in their mouths, and must be pulled straight out with steady pressure. LDAO recommends using fine-pointed tweezers or a sterilized needle. It is important to remove the entire tick, including the piercing mouthpart and to apply an antiseptic to the bite. LDAO recommends submitting removed ticks to a lab, health department, or veterinarian for identification and testing.

Early symptoms of Lyme disease usually appear from 3 to 30 days from infection, and can include fever, headache, muscle and joint pain, fatigue and a tell tale red skin rash that looks like a bull's eye. If caught early, Lyme disease can be successfully treated with antibiotics.

"You have certainly given us pause for thought," said Mayor Bernice Jenkins after hearing Cox's presentation. "Thank you for your courage in sharing your story with us."

Council agreed to petition the Premier that he request the minister of health to direct the Ontario public health system to make all available Lyme disease tests covered under OHIP, increase public awareness about Lyme disease in Ontario, and improve Lyme disease diagnosis and treatment protocols.