Help for Lyme disease not good enough, says County sufferer
The warm sun beckons skin that has been too long tucked inside coats, behind gloves and boots. Spring is in full swing now, with temperatures in the double digits, and—especially in the County, where people work and play outdoors—that means many are spending as much time as possible soaking in the good weather.
But as folks appreciate the outdoors, so too should they be aware.
On tiny tips of grass, clinging to lime green leaf buds or even birds as they complete their migratory route north over Lake Ontario, tiny, black insects are waiting to release their grip and find a new host.
Ticks start out small. A young tick is no bigger than a sesame seed, and is hardly noticeable.
They live by finding a soft, warm part of a host body—any larger mammal, like deer, foxes and human beings will do. Their bites have a natural analgesic quality, and hosts often don’t notice their presence. Once they’ve bitten a host, they latch on with a pair of pincers and slowly burrow into the skin, engorging themselves on their host’s blood for about a week, growing about as large as a pumpkin seed, before detaching themselves to digest their meal. Then the cycle is repeated.
Ticks carry a variety of bacteria in their gut that cause their hosts problems when, during their week-long feast, the bacteria infect the host. One such infection is known as borrelia burgdorferi, commonly known as Lyme disease.
It’s a difficult disease to diagnose. If noticed early, some symptoms, such as a bull’s eye shaped rash surrounding the bite area, make the disease an easy one to spot. But if a person doesn’t notice a bite, the infection can insinuate itself in the blood and immune system, causing longterm problems. The symptoms can be misdiagnosed as fibromyalgia, chronic fatigue syndrome, arthritis or multiple sclerosis.
Sufferers report pain in their extremities, numbness, muscle weakness, stiff joints and difficulty thinking, or a ‘fuzzy’ mind.
Sheila Stene has always loved the outdoors. She had once owned a log cabin, and now lives near Consecon, a view of Weller’s Bay from her kitchen window.
But lately, Stene has been wary of the outdoors. She hesitates to work in the garden, lie in the grass, for fear of ticks.
Stene has Lyme disease.
Although she has had many encounters with ticks, she recalls, one evening in 2013, feeling something on her shoulder blade. At first she ignored it, but when it seemed to get larger, she examined it in a mirror. A swiftly growing tick had attached itself to her shoulder.
She removed it and brought it to her doctor for testing.
It was three months before she got the test back, positive for Lyme. By then, the symptoms had already begun.
“I went online and looked up the symptoms, and I was just checking off all these things and went, ‘oh, great,’” says Stene. “I started getting stabbing pains in my heart.”
Although Stene went on a dose of antibiotics, the symptoms persisted.
“A lot of things got a lot better,” says Stene. “But then my teeth started turning blue, and I was putting on more weight.”
She stopped after four months, and for a while was fine. But then she got another bite. Her symptoms returned. Now she’s using an alternative approach, a homeopathic treatment involving vibration. It requires the retiree to take a part-time job just to pay: the treatments cost her about $10,000. But she wouldn’t trade them in. They are making her feel better.
Aptie Sookoo, an investigator specializing in tick bites for the Hastings Prince Edward Public Health unit, says that while diagnoses of Lyme disease are not very common in the region, they are far more common in the County. In 2016, there were 23 confirmed cases, with 14 in the County.
Sookoo says the health unit’s function is to educate the public and to monitor areas for ticks. Part of that is to actively collect ticks for study, and part is to take ticks from the public as they are found.
The program to monitor ticks in Prince Edward County ended in 2015.
“For three consecutive years, we have had more than 20 per cent of the ticks that were collected there tested positive for Lyme,” says Sookoo. He says that because the program is to monitor, rather than diagnose, the commonality of Lyme in County ticks meant the health unit was not getting any new data from collection there.
Sookoo will be at Quinte Conservation’s head office on May 30 at 6:30 p.m., providing the public with an informational talk about ticks and tick bite prevention. He also discusses the disease with doctors.
Sookoo says the most common course of action is to give potential sufferers of Lyme a blood test to diagnose the infection, followed by a course of treatment with doxycycline, a strong antibiotic, over several months. This, he says, is the “silver bullet” for most patients.
However, he understands Stene’s struggles.
“There is a small percentage of people who suffer from post-Lyme syndrome,” says Sookoo. “The patients actually suffer from bloodstream infection. There was very little self-reporting with respect to increase in cognitive function and very little to deal with fatigue.”
Studies involving these patients shows that stronger, intravenous antibiotics nevertheless retain neurological symptoms, often for their entire lives.
“Lyme, what it does is it destroys the immune system and body tissue. There’s a biomarker that it makes in the immune system that causes the body to continue to believe that it still is infected by Lyme and continues to produce antibodies,” he says.