LIFE WITH LYME DISEASE

[Dan Andrews]

http://www.niagarafallsreview.ca/ArticleDi....aspx?e=1111604

<h2 style="margin-top: 0pt;">LIFE WITH LYME DISEASE</h2>

WHO'LL BE THEIR NEXT MEAL?

<h4 class="grey">Posted By JOHN ROBBINS REVIEW STAFF WRITER</h4>

It has been a long time since Cheryl Booth has felt as good as she does today. Sure, there are times when her memory lets her down. And she doesn't have the stamina she had seven years ago, back before a bug about the size of a sesame seed burrowed into her skin and delivered the tiny dose of bacteria that was to wreak havoc on her body and her life.

But compared to the nightmare the 49- year-old Fort Erie woman is just awakening from, she figures she has it pretty good.

"I've got to ease myself back into life again," says Booth, who is recovering from chronic Lyme disease and the effects of the year-long antibiotic therapy that was needed to rid her body of the invader.

"If I do too much, if I push myself, I'll end up in bed. But it's nothing like it was before. It's controllable and manageable, and as time goes on I anticipate that I'll have it licked."

Lyme is the common

name for an infection caused by the bacteria Borrelia burgdorferi, which is transmitted to humans by the bite of a black-legged tick.

In 50 to 70 per cent of the cases of those who contract Lyme, one of the first symptoms is the development of a painless rash that looks something like a bull's eye.

Other early symptoms include fever, headache, muscle pain, stiffness and a general feeling of being unwell.

If detected and treated early with antibiotics, it's likely the patient will make a full recovery.

Left untreated, it can develop into a chronic condition that can mimic a variety of other illnesses, including lupus and multiple sclerosis.

The longer the bacteria is present in the body, the greater the chance permanent damage will be done.

When Booth first became ill back in the late spring of 2001, the last thing she would have suspected was Lyme disease.

Officially, it's considered a rare illness in Canada.

She remembers having a rash and some flu-like symptoms.

Falling spells and and unrelenting pain in her legs eventually led her to seek medical help.

"They just felt like they were turning to stone," Booth recalls. "There was nothing I could take to do anything about it to make it feel better."

She was given a battery of tests, but nothing definitive turned up.

She switched doctors. She underwent more testing.

One day, while doing her own research into the symptoms she was having, she came across information about Lyme disease.

She asked for and received a test for Lyme from her doctor, but the test came back negative.

Her condition deteriorate and still no one could explain what was happening to her.

"By that time, I couldn't remember how to drive to work," says Booth. "I would have days when I could barely talk. My conversation was really limited and when I was trying to find words, I wouldn't be able to say them."

Booth says when she asked to be retested for Lyme, the doctor told her the first test was accurate and if she persisted in thinking she had the disease then it might be time to see a psychiatrist.

But for the support of her friends and family, Booth says she might have given up hope.

Instead, she persisted and eventually obtained a referral to see an infectious-disease specialist in Toronto.

After reviewing her case history, the doctor sent a blood sample to a laboratory in California for a type of test that's controversial here.

Following the positive diagnosis last summer, Booth began six months of oral antibiotic therapy followed by another six months of antibiotics administered by intravenous injection.

"If I had been diagnosed sooner or, God forbid, someone had listened to me, I wouldn't have had to leave my job. I would have been able to help my family, instead of them helping me."

Not far down the road from where Booth lives is another person who might not have been diagnosed for Lyme disease if he hadn't heard about Booth's illness.

Richard Berry, a former Fort Erie town councilor, was hospitalized in 2004 for what was first thought to be a stroke. Later, doctors suspected multiple sclerosis, but Berry disagreed and refused treatment.

Suffering from severe bouts of dizziness, the self-employed excavation contractor got to the point where he couldn't work any more.

Last fall, he happened across an old acquaintance, a relative of Booth, who told him about her diagnosis and the treatment she was undergoing for Lyme disease.

He too obtained a referral and went to get tested in Toronto. He says the positive result came as a relief, after years of suffering without answers.

He has just begun long-term antibiotic therapy, but it's too early to know how fully he can expect to recuperate.

Both Booth and Berry are convinced they acquired the disease close to home. Both say they believe the problem is more widespread than what government statistics say.

There are areas in Ontario considered high-risk (known as endemic areas) for Lyme disease, because the bacteria has consistently been found in ticks from these areas. These include Long Point, Rondeau provincial park, Turkey Point and, most recently, Thousands Islands park.

Dave Young, Niagara Region Public Health manager of environmental

health, said the black-legged tick that can carry Lyme disease has been found in Niagara in small numbers, but most human cases can be linked to travel outside the region.

In 2007, public health sent 289 ticks away for identification and laboratory testing. Of that number, four turned out to be black-legged ticks. Only one of the four tested positive for the Lyme disease bacteria, and that tick likely hitched a ride into Niagara on an unsuspecting host.

"That tick was found on a dog, and the dog recently visited the Long Point- Turkey Point area," said Young.

A number of black-legged ticks were collected during a study of the Wainfleet Bog, but there's no evidence that Niagara has any hot spots.

More active field surveillance is needed, he said.

"We haven't really determined if there's that big a population of them here yet," said Young.

Lois Lacroix, manager of public health's infectious disease program, works closely with Young.

Her department is responsible for tracking human cases and following up with people who tested positive to try and figure out where they became infected.

In 2006, Niagara had no confirmed cases of Lyme disease. In 2007, there were two confirmed human cases.

Dr. Douglas MacPherson, physician manager of the infection control and infectious diseases branch of Ontario's Ministry of Health and Long-Term Care, says there are likely more cases of Lyme disease each year than are reported to public health officials.

However, he says he has confidence the system in place for surveillance and laboratory testing here is a good one.

He doesn't have the same level of confidence about tests confirmed at some labs outside of Canada.

"You need to have reliable testing and this is perhaps some of the difference between Ontario and some of the providers in the United States," said MacPherson. "We have a highly controlled, quality program for laboratory testing (and) that includes Lyme disease testing.

"I'm not going to comment on the good and bad of the U. S. public health system, but there are differences that are related to non-regulated testing, testing which cannot be confirmed by gold standards, clinical diagnoses which -what can I say to be diplomatic -may not be accurate."

According to Ontario Ministry of Health and Long-Term Care figures, there were 59 human cases of Lyme disease reported in 2007 -17 in which it's likely the victim acquired the disease in Ontario, 21 travel-related cases and another 21 that are classified as "undetermined."

Jim Wilson, president of the Canadian Lyme Disease Foundation, says he believes Canada has a medical system that's in denial.

In his opinion, doctors often overlook Lyme disease when trying to figure out what's wrong with their patients because they have been taught Lyme is rarely found here.

He also says doctors place too much faith in the type of test used in Canada, which he says is "antique."

"When the local (general practitioner) orders a blood test and it comes back negative, he's told it's a good test, therefore your patient doesn't have Lyme disease. End of story," said Wilson.

"That is so far on the wrong side of research, it's amazing."

Article ID# 1111604