Lyme Disease Halifax

Lyme Disease – Information on Lyme Disease- Life stories of Lyme disease

Browsing Posts tagged Jim Wilson

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

Page 1 of 3
November 28th, 2012
Dear Nova Scotia MLA/MP:
RE: Lyme Disease in Nova Scotia
Lyme Disease (LD) is an emerging disease in Nova Scotia and Canada that is generating considerable attention from the media, advocacy groups and communities. Given this situation, I felt it important that you had accurate and up-to-date information on LD in Nova Scotia and the provincial response plan.
LD is a bacterial illness that can be transmitted to humans through the bite of a blacklegged tick (deer tick). There are a number of tick species in Nova Scotia, but only the blacklegged tick can carry the bacteria that can cause LD. Not all blacklegged ticks carry the bacteria and the risk of acquiring LD remains low in the province. LD is readily treatable with appropriate antibiotics.
The Department of Health and Wellness (DHW) has an active LD response plan which includes an interdisciplinary committee (public health, veterinary medicine, wildlife biology) that provides evidence-based advice and guidance to the provincial government on the control of LD. Nova Scotia has multiple infectious disease and medical microbiologist experts in the province who deal with treatment and diagnosis of LD. DHW has a close working relationship with these clinical experts through an Infectious Disease Expert Group, which meets regularly to advise DHW on public health and infection control issues. We also work closely with our partners at the Public Health Agency of Canada and the National Microbiology Laboratory who provide evidence based recommendations for the prevention and surveillance of LD and ticks.
Tick and Lyme Disease Surveillance
Lyme disease is a notifiable disease under the National Microbiology Laboratory. Health care professionals are required to report cases of Lyme disease to Public Health when they diagnose clients clinically or with laboratory confirmation. In 2011, there were 54 confirmed cases of LD reported to Public Health, corresponding to an incidence rate of 5.8 cases per 100,000 population. Surveillance of both human cases and blacklegged ticks in the province enables DHW to keep abreast of the current state of Lyme disease in Nova Scotia.
Over the past few years, DHW together with the Department of Natural Resources and the Public Health Agency of Canada have been identifying and testing ticks collected in Nova Scotia. Analysis of this data has identified six areas where blacklegged ticks carrying the bacteria that can cause LD are known to be endemic (i.e. have become established as part of the local ecology). These endemic locations are areas in Yarmouth County, Shelburne County, Lunenburg County, Halifax County, Pictou County and most recently Queens County. These known endemic areas can be found on the Department of Health and Wellness website at http://www.gov.ns.ca/hpp/cdpc/lyme.asp
DHW has had a tick surveillance program in place since 2002, which included both passive (ticks being submitted by the public) and active plans. In the fall of 2011, DHW restructured its tick surveillance program to place an emphasis on active surveillance. Active surveillance involves ‘in the field’ work including small mammal testing and dragging vegetation to collect
Page 2 of 3
ticks. We will continue with focused active surveillance to determine additional areas where ticks may be establishing.
It is expected the number of LD cases will increase over time as ticks become more densely populated and expand their geographical range when conditions permit. Climate change related to global warming is expected to contribute to the increase of LD in Nova Scotia and Canada.
Public Information
DHW regularly provides consistent, evidence based information about LD and its prevention to the public. Strategies are implemented each year to provide Nova Scotians with information about the prevention of tick bites and to ensure health care providers have the most up to date clinical information. The DHW website is regularly updated plus we work closely with partners to disseminate information regarding LD to the public and stakeholders via various methods (letters via schools, residential letters, media releases, websites, signs in parks/campgrounds). DHW has also provided an advertorial for newspapers as well as news release each year. DHW regularly responds to multiple media requests and letters to government regarding LD.
Nova Scotians and visitors to the province can help prevent exposure to blacklegged ticks and LD by taking some simple precautions. This is especially important when in areas where there may be increased risk. Prevention messages can be found on the DHW website at: http://www.gov.ns.ca/hpp/cdpc/lyme.asp
Information to Clinicians
Webinars have been provided to health care providers in the last few years, addressing prevention, surveillance, diagnosis and treatment of LD. In addition, the DHW provides updates to physicians in the province via Doctors Nova Scotia. The Infectious Disease Expert Group has developed a document entitled “Statement for Managing Lyme Disease in Nova Scotia” which has been widely circulated to physicians in the province. This document is based on current evidence and follows the guidelines endorsed by the Infectious Disease Society of America.
Testing
Laboratory testing for LD in Nova Scotia follows the guidelines established by the Public Health Agency of Canada and the Centre for Disease Control and Prevention in the United States. These guidelines have been endorsed by the Canadian Public Health Laboratories Network and the Infectious Diseases Society of America.
We are aware of the Canadian Lyme disease advocacy group, Can Lyme, who claim that the testing and treatment of LD is inadequate. However, the testing methods they promote, and the ones used by many private labs in the US, are not endorsed by infectious disease and laboratory experts.
Research
DHW supports and partners with many researchers in the field of LD and tick surveillance. Research that DHW is aware of and supports includes the Public Health Agency of Canada’s study on identification of emerging endemic areas for the blacklegged tick and prediction of the further spread of LD. Two other research initiatives that DHW supports include the human seroprevalence study on LD and the Deer Treatment Study. We are aware that other
Page 3 of 3
researchers initiate studies within the province with or without consultation or consideration of experts on the interdisciplinary committee.
If you have additional questions regarding LD, or if you would like to involve a regional Medical Officer of Health in any meetings with community or advocacy groups, please contact your local Public Health office which can be found through the following website: http://novascotia.ca/DHW/about/phs-offices.asp
We appreciate your ongoing support and cooperation to help ensure Nova Scotians receive evidence-based information on LD.
Sincerely,
Robert Strang MD, MHSc., FRCPC
Chief Medical Officer of Health
c. Dr. Frank Atherton – Deputy Chief Medical Officer of Health, Health and Wellness
Elaine Holmes, Director – Communicable Disease Prevention and Control, Health and Wellness
Regional Medical Officers of Health

 March 2010

Critics and Lyme disease sufferers say their illness isn’t taken seriously enough and the ‘ignorance’ and ‘arrogance’ of Canadian health agencies has driven them to desperation.

http://www.ctv.ca/CTVNews/WFive/20091113/w5_lyme_091114/