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Seffernsville resident goes undiagnosed for two years

by Paula Levy

After two years of being ill, Shaelene Robar, Seffernsville, has been diagnosed with Lyme disease. The 15 year old's mother, Gail, has been advocating on her daughter's behalf.

It took two years for 15-year-old Shaelene Robar of Seffernsville to get a diagnosis and begin treatment for Lyme disease. The girl’s mother, Gail Robar, would not give up advocating for her daughter until she received answers and treatment.

 In December of 2008, Shaelene suddenly became ill. She and her family thought her illness was simply the flu. But the body aches and fever continued long after a normal flu illness would have cleared.

 ”The doctor kept saying that she would just be better, that it was a virus and it would just go away,” said Gail.

 But the symptoms would not go away and Shaelene began to become more and more ill. Over the coming months her fatigue, nausea, dizziness and now stomach pain intensified. Her mother took her to see doctors and specialists but no one could pinpoint the cause of Shaelene’s illness.

 Gail said during that time Shaelene was misdiagnosed with multiple sclerosis, chronic fatigue syndrome, Crohn’s disease, figbromyalagia and a mental illness. No treatments for these diseases helped and over the course of nearly two years, Shaelene kept getting sicker and sicker. She was also once thought to have anorexia because the teenager had lost over 30 pounds.

Shaelene said she had to drop out of school in Grade 8 because she was unable to cope with the extreme fatigue, dizziness and pain. This year she is supposed to be attending Grade 10 but she was only able to go to school for five days at the beginning of the year.

 ”I’m nauseous and I’m too weak to even move half the time,” said Shaelene.

 Gail said she realized that Shaelene had been bitten by ticks the summer before she became mysteriously ill. Her mother noted since the Robars do not live in an area that has the type of ticks – deer or blacklegged ticks – which are known to carry Lyme disease, at first Lyme didn’t seem possible. Gail said the ticks in their area are dog ticks, but now she is convinced that they too can transmit the bacterium that causes Lyme disease.

 The Public Health Agency of Canada maintains that blacklegged ticks are the only carriers that can transmit the bacterium that causes Lyme disease.

 Research scientist Dr. Robbin Lindsay said in Canada, the blacklegged tick and the western blacklegged tick are the types of ticks known to transmit Lyme disease to humans.

 ”While there have been several scientific research studies demonstrating that on rare occasions other types of ticks including the dog tick and insects like mosquitoes, fleas and certain biting flies can be infected with the bacterium that causes Lyme disease, they are not infectious and cannot transmit the bacteria to humans,” said Dr. Lindsay.

 Despite not having the well-known carriers of Lyme disease in her backyard, Shaelene was clearly ill. And Gail maintained that her daughter had contracted the disease. Her physician screened the young woman for Lyme disease. But that test proved negative. Lyme disease tests are first screened in Nova Scotia. Only those who screen positive are sent for further testing to the national lab in Winnipeg. Gail said the screening test is not reliable.

 ”The test is not reliable whatsoever. Those people that don’t test positive are out of luck,” she said.

The unreliability of the test is also maintained by Jim Wilson, president of the Canadian Lyme Disease Foundation.

 ”The present testing methods used were shown to be faulty,” said Mr. Wilson, quoting a January 2011 study. “It has been misdiagnosed as everything from multiple sclerosis, to chronic fatigue, Parkinsonism, irritable bowel syndrome, various forms of arthritis, psychiatric issues, heart conditions, and on and on. Canada just happens to have the highest rates in the world of these diagnoses but very little Lyme.” The foundation believes that Public Health is underestimating the burden of Lyme disease in Canada.

 Still convinced that Lyme disease was the culprit for her daughter’s illness, Gail continued to advocate on her daughter’s behalf. She took Shaelene to Port Hawkesbury to see a family physician who is known to treat patients suspected of having Lyme disease. He was contacted but did not return calls. However, through this physician, Gail paid $500 to have her daughter’s blood work sent to American laboratory IGene-X Inc.

 That test came back positive. But even though Shaelene has a positive diagnosis, it is not accepted in Canada because the laboratory is not a government-run lab.

 Gail said now that Shaelene finally has a diagnosis after two years, she is currently being treated with antibiotics by the physician in Port Hawkesbury. Shaelene said this course of antibiotics began in December and she has some improvement.

 ”I’ve been able to eat a lot more,” said Shaelene. But the teenager is still weak. Her mother expects it will take some time before Shaelene is able to return to a normal life.

 The Public Health Agency’s website states there are several antibiotics which can treat the illness but the sooner treatment starts, the better. In addition, it states that people with certain neurological or cardiac problems may require intravenous treatment and patients diagnosed in the later stages of the disease can have persistent or recurrent symptoms requiring a longer course of antibiotic treatment

The symptoms of Lyme disease usually happen in three stages. The first sign of infection is usually a circular rash which occurs in about 70 to 80 per cent of infected people. It begins at the site of the tick bite after a delay of three days to one month.

 Other common symptoms include

 * fatigue

 * chills

 * fever

 * headache

 * muscle and joint pain

 * swollen lymph nodes

 If untreated, the second stage of the disease can last up to several months and include

 * central and peripheral nervous system disorders

 * multiple skin rashes

 * arthritis and arthritic symptoms

 * heart palpitations

 * extreme fatigue and general weakness

If the disease remains untreated, the third stage can last months to years with symptoms that can include recurring arthritis and neurological problems.

 -The Public Health Agency of Canada

 

posted on 03/15/11

Elizabeth May calls for Lyme disease strategy
Green Party leader says Lyme disease is no longer rare
CBC News Posted: Jul 9, 2012 8:00 AM ET Last Updated: Jul 9, 2012 10:46 AM ET

Federal Green Party Leader Elizabeth May says the federal government needs to come up with a national strategy to deal with Lyme disease. (Sean Kilpatrick/Canadian Press)

Federal Green Party Leader Elizabeth May says the federal government needs to develop a national strategy to combat Lyme disease that includes ways to improve prevention and diagnosis of the disease.

The British Columbia MP’s comments come on the heels of several people speaking out about the presence of Lyme disease in the Fredericton area.

May introduced a private member’s bill in June that calls on federal Health Minister Leona Aglukkaq to hold a conference to draft a national plan for dealing with Lyme disease.

May said the disease is becoming more common in Canada and the federal government needs to craft a cohesive strategy to address it.

“The scope of the problem is number one, that more people are getting Lyme disease than the medical community has expected,” May said.

“A lot of doctors still operate under the assumption that this disease is very, very rare — that’s no longer the case. And we also have the problem that it’s hard to diagnose.”

May said the national strategy would help various health districts across the country share their experiences on dealing with the disease.

“We’re looking at putting together a strategy to deal with the need for better awareness, for prevention, the need for better tools for diagnosis and of course, the need for better tools for treatment,” she said.

The state of Maine recently issued warnings for residents there to take precautions because of an increase in ticks carrying Lyme disease.

Lyme disease is caused by the bite of two species of ticks: blacklegged ticks, which are also called deer ticks, and western blacklegged ticks.

The first sign a person who has contracted Lyme disease may have is a circular rash surrounding the spot where the bite happened.

The rash normally appears between three and 30 days after the bite. The rash may be followed by symptoms like fatigue, chills, fever, headache, muscle and joint pain and swollen lymph nodes.

If left untreated, the disease can progress to a second phase, which can last several months. Symptoms in the second phase include migraines, weakness, multiple skin rashes, painful or stiff joints, abnormal heartbeat and extreme fatigue.

FREDERICTON RESIDENTS SPEAK OUT

Another Fredericton-area resident has come forward to talk about Lyme disease being in the area.

Brian McEwing told CBC News he was bitten by an infected tick last fall at the University of New Brunswick’s woodlot.

McEwing said he was wearing a wool sweater and a fleece jacket while geocaching, but a tick still managed to burrow into his arm.

He removed the tick and it tested positive for Lyme disease.

“I did have some anxiety for a while, but I knew I’d caught it early,” said McEwing, whose doctor gave him antibiotics.

“I was comfortable with the treatment I received and, like I say, so far, everything’s fine.”

McEwing said there have been at least four cases among members of the congregation at his church.

Public health officials say they have been no confirmed cases of Lyme disease in the Fredericton area in the past five years.

A Fredericton-area woman said in an interview on Friday that it’s time for the New Brunswick government to take Lyme disease more seriously.

Lorraine Bird, a resident of Charters Settlement, said she spent six years trying to get a proper diagnosis of why she was suffering numbness in her face and constant fatigue.

She said doctors kept telling her she was sick but they didn’t know how to treat her.

“So it’s very complex and it mimics a lot of other diseases and it’s very frustrating for people,” she said.

“We need to have that reviewed. That’s the bottom line. If our testing was more intricate or different, it would certainly help more people.”

Bird eventually had her blood sent to California for testing and a doctor in Maine began treating her with antibiotics.

Article link here:
http://www.cbc.ca/news/technology/story/2012/07/09/nb-elizabeth-may-lyme-disease-731.html