By Tom Collins
AMHERST ISLAND — An Ontario sheep farmer is warning other farmers about Lyme disease after a 20-year battle has left her unable to eat without a feeding tube.
Sally Bowen, of Topsy Farms on Amherst Island, believes she was bitten by a tick while bucket feeding more than 100 lambs back in 1996. But it took years to find a physician who even thought of testing for Lyme disease.
Bowen became bed-ridden with a severe flu within a month. The toes on her left foot became numb — 20 years later, both feet are numb. She had muscle spasms and stomach pain. In four years, her weight dropped from 125 lb. to 84 lb. Her diaphragm spasmed so tightly that her lungs weren’t able to get enough oxygen.
She went to Kingston hospital emergency where doctors couldn’t find anything wrong and sent her back home even though she was unable to digest food without being in excruciating pain.
“I was dying of starvation,” she said. “They sent me home to Amherst Island essentially to die.”
Lyme is a disease transferred by blacklegged ticks (commonly called deer ticks) that hide in long grass and shrubs and will hop aboard almost any animal. The tick latches on with a bite and can spend days gorging on blood from the host. A tick’s bite can numb the host’s skin so many times the animal won’t know the tick is there. The tick is also a carrier of the bacteria that causes Lyme disease and farmers are at higher risk to infection because they work where ticks hang out.
There’s plenty of debate about the prevalence of Lyme disease. Even five years ago some physicians didn’t believe the disease even existed in Ontario. In 2014, there were only 149 confirmed cases of Lyme disease in Ontario and 71 probable cases. New York state averaged 3,886 cases of Lyme disease per year from 2005-2014. Canada has averaged 340 from 2009 to 2014.
While the disease was still undiagnosed, Bowen went back to the hospital for one more test when she fainted. Hospital staff inserted a feeding tube into her nostril and down her nasal canal to help her regain strength. Bowen has been dependent on a feeding tube ever since.
She tried everything to get answers. Some physicians told her the problem was all in her head. So she went to a psychiatrist who said there was nothing wrong with her brain. Another doctor told her “it’s too bad western medicine can do nothing for you.” So Bowen tried natural remedies and acupuncture.
She saw 24 doctors in seven years before an Ottawa doctor suggested testing for Lyme, a disease Bowen had never heard of. The test came back positive.
“That was bizarre, to be so happy to be diagnosed with something that is pretty drastic,” she said. “So many of my neighbours and my relatives were like, ‘Get it together. What the hell’s wrong with you?’ It was really nice to be able to put a label on it. And that sounds bizarre, but it was a relief, emotionally.”
Bowen said no infamous bull’s-eye rash, often a tell-tale sign of the disease, had ever appeared on her body. Some U.S. state health departments say the rash appears in only 35 to 59 per cent of Lyme cases.
Now after about 12 years of treatment, she is free of Lyme disease. But it ravaged so much of her body she still has a feeding tube that protrudes from her nose 24 hours a day. The tube feeds her 17 hour a day — a big improvement from when it was 23 hours a day. Bowen’s solar plexus, diaphragm and valves in and out of her stomach are in a painful, constant spasm.
She misses food but every morsel makes it difficult to breathe. She sits down for dinner but doesn’t eat. She has an impulse to lick her fingers when handling homemade apple sauce but doesn’t. “I’m way better than I was,” she said. “But I can’t eat. Yet.”
While many doctors wouldn’t believe Lyme was in Ontario for years, veterinarians were a different story. Vets were warning pet owners to watch out for ticks on their animals as the cases of Lyme were increasing every year.
“What I’ve learned is the vets were far more knowledgeable about Lyme than the doctors,” said Bowen, recalling that when she got the disease “virtually all Canadian doctors were certain it was not in Canada.”
She said one medical officer of health told her that there is no Lyme disease in Ontario as it would be bad for tourism. “It’s just the level of societal lack of awareness and it almost seems to be a determined, stubborn lack of awareness that horrifies me.”
The disease prevented her from working on the farm for many years and she missed much of her two sons’ teenage years. “It’s an ongoing grief that it robbed me of that part of my life with my kids.”
Lyme disease can be cured if discovered quickly. Someone bitten by a tick can take one oral dose of medication within a couple of days. But the longer the disease is in the body, the harder it is to prevent long-term damage.
“If you or a loved one do detect a tick, it doesn’t matter what you’re doing,” said the 69-year-old Bowen. “Take this shit seriously.”