March 27, 2013 - 2:22 PM
By Shannon Quesnel
Suicide is the most common cause of death for those with Lyme disease.
Deborah Hart and Lance Tycholaz know this. Both of them have been living with it. After years of being misdiagnosed and suffering with symptoms some Lyme disease sufferers opt to kill themselves.
Hart and Tycholaz were at a Lyme disease presentation at the Penticton Public Library and on Tuesday put on by Jim Wilson, the founder of the Canadian Lyme Disease Foundation.
Wilson said there are two big problems with Lyme disease with the first being the disease itself. The second is the Canadian medical community. Half of Wilson's presentation was about the latter.
For years Lyme disease in Canada has been ignored at worst or misdiagnosed at best. Some Lyme disease patients have been treated as having multiple sclerosis or fibromyalgia.
He said there's evidence Lyme disease was detected as early as 1911 but in this country the condition is still difficult to recognize.
Another problem is how easy it is to get infected. A victim might never know they have it.
Lyme disease comes from bacteria carried in the stomachs of certain ticks. These tiny bugs are found on deer, birds and rodents. Ticks also wait in bushes. They'll crawl on and cling to fur or clothing and search for exposed skin to sink their teeth into. Once attached they'll live off the host's blood.
Wilson said this doesn't mean a person has immediately contracted Lyme disease. If a person finds a tick on themselves they can use tweezers to pinch the skin around the head of the tick and pull up. But don't squeeze the body. This might inject the bug's guts into its host. The tick should be put into a plastic bag with a wet piece of tissue and saved. It can help with a diagnosis if the victim develops symptoms.
Tycholaz and Hart said getting correctly diagnosed was difficult. It took 20 years for Hart. It took a couple of years for Tycholaz. They dealt with doctors who treated it as another disease or declared their symptoms a psychological problem.
The 59-year-old Penticton woman used to work before she came down with problems. She lost her job and went on long-term disability. She had no energy, was in pain and her limbs stiff and heavy. Doctors either didn't know what to do with her or refused to investigate. She thought about killing herself multiple times.
Things turned around when she sent a blood sample to IGeneX, a lab in northern California which specializes in Lyme and tick-related disease testing. She tested positive.
“I was over the moon,” she said. “I had hope.”
Since then she has been taking antibiotics and other treatments to suppress the disease.
Tycholaz, 39, has not been so lucky. The Summerland resident was diagnosed with having a strong strain of Lyme disease in 2012.
He figured he was bit and infected at his work in 2009. One of the first signs something was wrong was a hard film growing over his fingertips. Then his skin started to flake. He had pain in his feet and legs. His hands were affected. Sunlight began to hurt.
At Tuesday's presentation his left foot was wrapped in three socks and a liner and was stuffed into a down-filled boot. He's trying to make his body think his leg is warm. He wore a thin red cloth around his head and neck. He sprays water on the material to keep it moist, which prevents his skin from flaking. Lately, he developed fibrous lesions.
He has struggled to find doctors who can help him. He was once diagnosed by a dermatologist with having a mental problem. After months of taking a double dose of anti-psychotic pills he almost lost his mind. He said if wasn't for his parents he would have killed himself.
Wilson knows many like Hart and Tycholaz. Wilson and his daughter both contracted the disease. He got it in 1991 in Dartmouth, N.S., and she was infected in 2001 in the Okanagan Valley. He was treated for it. His then-20-year-old daughter had to have a pacemaker surgically installed.
Wilson said after suicide, heart disease is the second most common cause of death.
Tycholaz asked what Wilson would tell the federal minister of health. Wilson said adopt the European method. Lyme disease is diagnosed and treated much more rapidly and aggressively in other countries.
Wilson said Canadian medical doctors need to think like detectives when patients complain about unusual symptoms.
“Don't automatically think it's the flu and send your patient home.”
He said the best prevention is avoiding getting bit in the first place. Deer ticks and their cousins live in bushes. Hikers are advised to avoid walking through or close to bushes.
Ticks that carry the Lyme disease bacteria are very hardy and can survive for 10 years even in tough conditions. One tick survived several trips through a clothes dryer in one test.
For more information on ticks, Lyme disease and safe tick removal go to www.canlyme.com.
To contact a reporter for this story, email Shannon Quesnel at firstname.lastname@example.org or call 250-488-3065.
News from © InfoTel News Ltd, 2013