Sounding the alarm on Lyme Disease
Wendy Aitken is seen here with her
husband Larry at their Kingston home.
After nearly two decades of being told she has chronic fatigue syndrome
and fibromyalgia, in 2010 further tests revealed she has chronic Lyme
disease.
Ian MacAlpine/ The Whig-Standard
KINGSTON - Two decades ago,
Wendy Aitken was told by her doctor that she suffered from chronic
fatigue syndrome and fibromyalgia, which causes pain and tenderness in
one’s joints and body parts.
Since husband Larry was in the military, the couple and their two children grew accustomed to moving from posting to posting, town to town, every two or three years.
“I would get a new MD, and they were perfectly happy with that diagnosis (of fibromyalgia),” Aitken, 52, recalled.
“We landed back in Kingston in 2004, and everything had escalated. I wasn’t able to work at all, I wasn’t able to cook, I wasn’t able to get out of bed for many, many days. And, if I did go out, I would have severe panic attacks where I couldn’t even put money in the parking meter.”
The move back to Kingston, and the stress that goes along with that move, saw her pain grow more acute.
“Given the stress of moving, it’s hard to have a baseline of, ‘Oh, now you’re worse than you were,’” Larry said.
“In 2004, it was evident she was much worse.”
Simple physical activity would exhaust her, leaving her bed-ridden.
“It was getting worse, so I started looking for other things it could be,” she said.
Larry said that, before she became ill, his wife was athletic and outgoing, but that her illness drained her.
“It’s been a long, slow descent,” he said.
“She gradually lost mobility, became more in pain, constant pain. So gradually it started to affect everything we could do as a family.”
When her husband travelled to the Congo in 2006, leaving her at home with their two children, the pain got worse, Aitken said.
And the series of doctors they visited weren’t able to help them, Larry said, and the couple grew increasingly frustrated.
“We see a doctor about the pain and they provide a pain medication to deal with the symptom but not the cause,” she said.
“No one was interested in finding a cause; they would just frown and shake their heads and said, ‘This is too bad, it’s chronic fatigue. It’s something that happens, we’re not sure why.’ ”
Then she saw an ad for Fibromyalgia and Fatigue Centers, based in Atlanta, Ga., and told her husband they should go there to see what can be done to alleviate her pain.
The battery of tests she underwent in January 2010 revealed she wasn’t afflicted with fibromyaglia and chronic fatigue syndrome — she had chronic Lyme disease.
The problem, she said, is that chronic Lyme disease isn’t recognized by Canadian doctors.
“There are no doctors in Canada who can treat Lyme after one month,” Aitken said, saying that she counts a neurologist, a rheumatologist. a psychologist and an infectious disease expert among the medical professionals she has seen.
Lyme disease, which is passed on by black-legged ticks, is hard to diagnose years afterward, she said, because its symptoms mimic other diseases such as multiple sclerosis and Lou Gehrig’s disease.
“The thing about Lyme is you can be bitten and nothing happens for 10 years,” she said, and that stressful situations often awaken the dormant disease.
She showed the results of her Atlanta tests to her family doctor.
“The results were discredited,” said Larry Aitken, a former commander of CFB Kingston.
“They weren’t accepted by either the infectious disease doctor or family physician. They said it’s a ‘boutique’ clinic, they do this thing to make money, and the test facility isn’t approved by the (Centre for Disease Control).”
The illness particularly affected Aitken neurologically, she said, and that she has experienced seizures, is always tired, sometimes feels numb and her balance is affected.
“I have a real neurological case, so I have seizures, I have fatigue, I have numbness in my body, I have bad balance, I have motion sickness. Sometimes I can’t walk without smashing into things,” she said.
And she also feels very disoriented.
“It’s kind of like you’re in a fog and things don’t really have edges,” she said.
“You’re not yourself.”
Some doctors, she said, thought she had bipolar disorder or another mental illness.
While her doctors didn’t believe her, her husband did.
“I was due to go to Ottawa, but Wendy’s health just wouldn’t allow us to do another move, so I retired (in 2009),” he said.
However, after finding out that she had Lyme disease, Wendy and friends took to the Internet to do their own research.
She took solace in the fact that she wasn’t alone in her pain, that others were suffering and frustrated, too.
She couldn’t find any “Lyme-literate” doctors in Canada, with the exception of Hope, B.C.-based Dr. Ernie Murakami, who retired from the medical profession to concentrate solely on Lyme disease.
It was the Aitkens who urged Dr. Murakami to come and speak in Kingston on the subject this Thursday evening.
Her perseverance has also led her to a doctor in the United States who treats those with chronic Lyme disease even though it isn’t recognized by the the Infectious Disease Society of America.
She has been undergoing treatment for the past two and a half years.
While those treatments have seen her pain and fatigue subside — she can now do half a day’s worth of activity before tiring — but the neurological effects linger on.
Still, it has been encouraging for the couple.
Larry said his wife has noticeably improved.
“It has been two and a half years, and Wendy is mostly better, but she’s not 100%,” he said. “I’m not sure she will ever be 100%.”
There are other changes that are also encouraging, Wendy added.
The illness has now entered political discussions as well, as Green Party leader Elizabeth May tabled a private member’s bill in June urging for a national strategy to tackle the tick-borne illness.
“They know a lot more than they did 20 years ago, but what’s happened is… Kingston and the Islands is endemic with ticks because the songbirds are bringing them from the States,” said Aitken, who even has her own website, https://lymezone.info.
While 30,000 cases are diagnosed annually in the U.S., just 150 are diagnosed in Canada, she said.
“It’s like they stop at the border,” she said.
Still, change can’t come soon enough for the Aitkens.
“It comes down to diagnosis and treatment,” Larry said.
“If doctors don’t believe something exists, and there’s no cheap and effective way of testing for it, they’re not going to do it.
“With the growth of ticks and the infections, more and more people are going to get sick, and they’re going to be seeking diagnosis and treatment that in Canada is virtually impossible to get.”
peter.hendra@sunmedia.ca
Sidebar
What: A free lecture by Dr. Ernie Murakami, an expert on Lyme disease, followed by a question-and-answer period.
When: Thursday, Sept. 20, from 6 to 10 p.m.
Where: Ambassador Conference Resort, 1550 Princess St.
Since husband Larry was in the military, the couple and their two children grew accustomed to moving from posting to posting, town to town, every two or three years.
“I would get a new MD, and they were perfectly happy with that diagnosis (of fibromyalgia),” Aitken, 52, recalled.
“We landed back in Kingston in 2004, and everything had escalated. I wasn’t able to work at all, I wasn’t able to cook, I wasn’t able to get out of bed for many, many days. And, if I did go out, I would have severe panic attacks where I couldn’t even put money in the parking meter.”
The move back to Kingston, and the stress that goes along with that move, saw her pain grow more acute.
“Given the stress of moving, it’s hard to have a baseline of, ‘Oh, now you’re worse than you were,’” Larry said.
“In 2004, it was evident she was much worse.”
Simple physical activity would exhaust her, leaving her bed-ridden.
“It was getting worse, so I started looking for other things it could be,” she said.
Larry said that, before she became ill, his wife was athletic and outgoing, but that her illness drained her.
“It’s been a long, slow descent,” he said.
“She gradually lost mobility, became more in pain, constant pain. So gradually it started to affect everything we could do as a family.”
When her husband travelled to the Congo in 2006, leaving her at home with their two children, the pain got worse, Aitken said.
And the series of doctors they visited weren’t able to help them, Larry said, and the couple grew increasingly frustrated.
“We see a doctor about the pain and they provide a pain medication to deal with the symptom but not the cause,” she said.
“No one was interested in finding a cause; they would just frown and shake their heads and said, ‘This is too bad, it’s chronic fatigue. It’s something that happens, we’re not sure why.’ ”
Then she saw an ad for Fibromyalgia and Fatigue Centers, based in Atlanta, Ga., and told her husband they should go there to see what can be done to alleviate her pain.
The battery of tests she underwent in January 2010 revealed she wasn’t afflicted with fibromyaglia and chronic fatigue syndrome — she had chronic Lyme disease.
The problem, she said, is that chronic Lyme disease isn’t recognized by Canadian doctors.
“There are no doctors in Canada who can treat Lyme after one month,” Aitken said, saying that she counts a neurologist, a rheumatologist. a psychologist and an infectious disease expert among the medical professionals she has seen.
Lyme disease, which is passed on by black-legged ticks, is hard to diagnose years afterward, she said, because its symptoms mimic other diseases such as multiple sclerosis and Lou Gehrig’s disease.
“The thing about Lyme is you can be bitten and nothing happens for 10 years,” she said, and that stressful situations often awaken the dormant disease.
She showed the results of her Atlanta tests to her family doctor.
“The results were discredited,” said Larry Aitken, a former commander of CFB Kingston.
“They weren’t accepted by either the infectious disease doctor or family physician. They said it’s a ‘boutique’ clinic, they do this thing to make money, and the test facility isn’t approved by the (Centre for Disease Control).”
The illness particularly affected Aitken neurologically, she said, and that she has experienced seizures, is always tired, sometimes feels numb and her balance is affected.
“I have a real neurological case, so I have seizures, I have fatigue, I have numbness in my body, I have bad balance, I have motion sickness. Sometimes I can’t walk without smashing into things,” she said.
And she also feels very disoriented.
“It’s kind of like you’re in a fog and things don’t really have edges,” she said.
“You’re not yourself.”
Some doctors, she said, thought she had bipolar disorder or another mental illness.
While her doctors didn’t believe her, her husband did.
“I was due to go to Ottawa, but Wendy’s health just wouldn’t allow us to do another move, so I retired (in 2009),” he said.
However, after finding out that she had Lyme disease, Wendy and friends took to the Internet to do their own research.
She took solace in the fact that she wasn’t alone in her pain, that others were suffering and frustrated, too.
She couldn’t find any “Lyme-literate” doctors in Canada, with the exception of Hope, B.C.-based Dr. Ernie Murakami, who retired from the medical profession to concentrate solely on Lyme disease.
It was the Aitkens who urged Dr. Murakami to come and speak in Kingston on the subject this Thursday evening.
Her perseverance has also led her to a doctor in the United States who treats those with chronic Lyme disease even though it isn’t recognized by the the Infectious Disease Society of America.
She has been undergoing treatment for the past two and a half years.
While those treatments have seen her pain and fatigue subside — she can now do half a day’s worth of activity before tiring — but the neurological effects linger on.
Still, it has been encouraging for the couple.
Larry said his wife has noticeably improved.
“It has been two and a half years, and Wendy is mostly better, but she’s not 100%,” he said. “I’m not sure she will ever be 100%.”
There are other changes that are also encouraging, Wendy added.
The illness has now entered political discussions as well, as Green Party leader Elizabeth May tabled a private member’s bill in June urging for a national strategy to tackle the tick-borne illness.
“They know a lot more than they did 20 years ago, but what’s happened is… Kingston and the Islands is endemic with ticks because the songbirds are bringing them from the States,” said Aitken, who even has her own website, https://lymezone.info.
While 30,000 cases are diagnosed annually in the U.S., just 150 are diagnosed in Canada, she said.
“It’s like they stop at the border,” she said.
Still, change can’t come soon enough for the Aitkens.
“It comes down to diagnosis and treatment,” Larry said.
“If doctors don’t believe something exists, and there’s no cheap and effective way of testing for it, they’re not going to do it.
“With the growth of ticks and the infections, more and more people are going to get sick, and they’re going to be seeking diagnosis and treatment that in Canada is virtually impossible to get.”
peter.hendra@sunmedia.ca
Sidebar
What: A free lecture by Dr. Ernie Murakami, an expert on Lyme disease, followed by a question-and-answer period.
When: Thursday, Sept. 20, from 6 to 10 p.m.
Where: Ambassador Conference Resort, 1550 Princess St.
