Promising treatment brings new hope for patients with chronic Lyme disease

W5: Bitten, part one W5's Molly Thomas speaks to a Canadian Lyme disease patient who had to struggle for years just to get a diagnosis.

KENDAL, Ont. — Kevin Matthews was a healthy 58 year old trying to ease into a slower lifestyle, but things took a turn on a trip in 2017.

That was the year he was hunting near Kingston, Ont. and was bitten by a tick. He recalls extracting the arthropod from his stomach, but wasn’t alarmed.

"I definitely had a bite on my stomach, it seemed infected for a while, it festered, but no bullseye rash," he says.

The thought of Lyme disease didn’t even cross Matthews' mind, so he didn’t seek immediate treatment, a decision he now regrets.

About three months after that trip, he started noticing severe pain in his joints, especially his hands, wrists and elbows. He went to his family doctor and suggested it could be Lyme disease.

He was prescribed the standard antibiotic Doxycycline, but it was too late and it didn’t work. Weeks went on, as did the pain.

"You can’t pick up a cup of coffee, the pain is so excruciating. My life wasn’t the same," he says.

Still seeking answers, Matthews opted to see a naturopath who submitted his blood work for an international test that confirmed he was positive for Lyme.

Lyme disease is a bacterial infection that invades the human body when someone is bitten by a black-legged tick. They live in wooded, grassy areas and survive nearly year-round.

The population of black-legged ticks is on the rise in Canada, with millions of them in almost every region of the country.

When black-legged ticks bite, they extract blood and leave behind bacteria that can wreak havoc in the body. They can cause Lyme disease and many other co-infections.

Just a short dose of an antibiotic usually shuts down the disease if treatment is quickly sought. If someone goes undiagnosed for months or years, the symptoms can be debilitating, life altering and chronic.

Until now, treatments for chronic Lyme disease have varied as patients experience a wide range of symptoms. Often they include multiple antibiotics for longer amounts of time and infusions of nutrients designed to boost the immune system.

Dr. Tim Cook is an internal medicine specialist who retired after 20 years in the Canadian Forces Medical Service as a lieutenant-colonel. He has also served as the personal physician to two Governors General. He runs a busy integrative medicine practice in Toronto, called P3 Health.

Matthews was referred to Dr. Cook in 2019 and began treatment with a regime of antibiotics and supplements. He recalls what it was like seeing so many bottles of pills on his kitchen counter.

"At one point I was taking 20-25 pills a day. Never before had I taken more than a vitamin or two. I was taking things like Rifampin, Cholestyramine, Leucovorin, Dapsone and a bunch of probiotics."

I visited Dr. Cook to gather information about how he treats patients with chronic Lyme disease patients, and was surprised when he pushed a bottle of red and blue pills across his desk.

"OK, now this is exciting," he said. "Disulfram (DSF) is a breakthrough because it is one of only two or three medications that are known to specifically target the slow-growth phase of Lyme that regular antibiotics do not eradicate."

DSF also goes by the name "Antabuse" and it assists alcoholics who are trying to quit drinking. If you drink, even a little alcohol, while on it, you get sick.

"What has surprised me is how patients improve with very little of it. Prior to DSF, the conventional combinations of antibiotics would make most patients feel quite a bit better, but they would often say that their 'brain fog' and fatigue never quite went away. These two symptoms are often completely and rapidly resolved with DSF," Dr. Cook said.

Matthews started taking the drug this summer and while the early results were positive, getting the dosage perfect is critical to long-term relief.

"When I started it, the pain went away immediately … it was a miracle. But, a couple of months in as I increased the dose, I started having mild headaches and odd night dreams. So, I stopped."

Matthews hopes he can get back to that pain-free zone with DSF, just on a lower dose. Dr. Cook acknowledged it might not be for everyone, but for the growing list of Canadians suffering from chronic Lyme disease, it might be a game changer.

“Patients with more severe symptoms, those with long-standing symptoms and those who have failed courses of conventional antibiotics are good candidates," said Dr. Cook.

Matthews is hopeful the treatment will get him back to who he was before that hunting trip.

"I would do anything to make the pain stop."