Lyme disease tricky to diagnose
Number of cases may be under-reported because blood-testing not always foolproof
By Florence Loyie, Edmonton Journal May 23, 2010 10:00 PM
The number of Albertans with Lyme disease may be under-reported because the illness is often misdiagnosed, says an Edmonton board member of the Canadian Lyme disease Foundation.
Part of the problem is infectious disease specialists won't treat for suspected Lyme disease unless they have a positive blood test from an approved laboratory, said Janet Sperling, who is also a University of Alberta entomologist, and co-author of a submission to The Canadian Entomologist on the presence of Lyme disease ticks in Alberta.
Sperling said many local cases go undiagnosed partly because she believes local labs give out too many false negatives.
In 2005, her oldest son, Ed, then 15, contracted Lyme disease, likely on a family vacation in California. He was tested for a number of diseases ranging from Parkinson's to epilepsy by local doctors. Three tests done in Alberta for Lyme disease came back negative.
When Sperling and her husband sent Ed's blood to a California lab, it came back positive for Lyme disease. But local doctors remained skeptical even though Ed's condition continued to deteriorate, she said.
It was not until late 2005 that a doctor reluctantly put Ed on three months of intravenous antibiotics, followed by six months of oral medication. Ed has since made a full recovery.
Between 1992 and 2006, 19 cases of Lyme disease were reported in Albertans, all who had travelled to eastern Europe or the east coasts of Canada and the United States, where ticks carrying the bacteria are common.
Sperling said her son is not listed among the Alberta statistics even though the California lab gave him a positive result and the antibiotic regime cured him. That's because the provincial health office insists a blood test to come back from the laboratory with five positive indicators to define Lyme disease. The European standard requires three.
The disease is rarely fatal in humans but can cause fatigue, fevers, headaches, severe arthritis, abnormal heart beats and other symptoms if left untreated with antibiotics.
The first sign is often a circular rash, called a bull's-eye rash, where the tick has bitten and burrowed. The ticks start out the size of a freckle, but can balloon up to the size of a grape after a bloody meal.
In 2007, provincial health officials confirmed the western blacklegged arachnid had been found in Alberta. Unlike Alberta's moose tick and other local varieties, the western blacklegged arachnid is known to carry the bacteria that causes Lyme disease.
Last week, Alberta's chief veterinarian, Dr. Gerald Hauer, said he was informed that three ticks found by a provincial surveillance project were positive for the bacteria. One tick was found in the Ardrossan area, just east of Edmonton. The other two were found near Calgary and High River. All were collected in the last three weeks. They were tested at the Public Health Agency of Canada's Winnipeg lab.
Sperling said she disagrees with the government's finding that Alberta's first identified Lyme disease carrying tick was found in 2007. "There had been a positive (Lyme disease) tick found in Grande Prairie in 1994," she said, adding she has supporting documentation. Sperling said the foundation has waged an awareness campaign for years to get the message out that you can contract Lyme disease anywhere in Canada, including Alberta. "Alberta has been a particularly tough spot to get the diagnosis for humans," Sperling said. "This is really strange because the vets don't seem to have a problem with saying we recognize we have Lyme disease in Alberta."
Linda Laidlaw's oldest daughter, Xian, contracted Lyme disease as a four-year-old, but was never diagnosed in Canada. "We had to travel to the U.S. for diagnosis and treatment ... and spent over $50,000 to help her recover, none of which has ever been reimbursed," Laidlaw said in an e-mail. "At the height of her illness, I was told that she had an incurable degenerative neurological illness that was likely a rare form of late onset autism or an unknown genetic illness and that there was nothing more her doctors could do.
"By then she'd been ill for about six months. She had lost her ability to communicate and her cognitive skills as well as suffering from myriad physical problems," she said.
Her daughter spent a month in the Stollery Children's Hospital being tested, although never for Lyme disease, and was seen by over 20 pediatric specialists. She also spent three weeks as an in-patient in the Royal Alexandra's secured child psychiatric unit.
Laidlaw said she was sitting in the hospital reading The Journal when she read a story about Ed Sperling and decided to contact the family.
Once Xian began receiving antibiotic treatment for Lyme disease and tick-borne co-infections, her daughter began to get better and continues to improve daily. Xian is now six years old. "If only one of the many doctors who had seen her had known to diagnose Lyme or even just suggested it to me as a possibility, my daughter and our family would have been spared from the ensuing years of pain and difficulty, from which we are still trying to recover," she said.
Laidlaw said she is not sure where Xian contracted the disease but it was either in Alberta or British Columbia because she has never travelled to any U.S. areas where the ticks are found. "The irony of this story is if I had a dog with Lyme disease, I would be more likely to get treatment for it in Alberta than for my child," Laidlaw said.
Sperling said the foundation's goal is to convince the infectious disease medical community that even if a blood test comes back negative for Lyme disease, the patient should begin an antibiotic regime based on their symptoms and history.
Dr. Gerald Evans, president of the Association of Medical Microbiology and Infectious Disease Canada, said in a November 2009 news release that the organization's doctors are at the forefront of antibiotic resistance issues and are confronting the overuse and misuse of antibiotics.
"We must consider the potential serious side-effects of inappropriate antibiotic use for unproven (Lyme disease) including: Clostridiumdifficile-associated disease, life-threatening drug interactions and antibiotic resistance," Evans said in the statement, released in response to a CTV W5 investigation into diagnosis of Lyme disease in Canada.
Evans added that in 2005, the U.S. Centres for Disease Control and Prevention questioned the validity of some American laboratory tests for Lyme disease that use a diffe-ent standard for interpretation. The tests costs hundreds of dollars and are billed directly to the patient.
"This is cause for skepticism," Evans said. "Furthermore, some American doctors who claim to be (Lyme disease) specialists do so without any requirement or regulatory authority to verify their credentials or any established standards for claiming such a title."
Dr. Andre Corriveau, Alberta's chief medical officer of health, said last week he was alerting the medical officers of health throughout the province of the three ticks recently found. Corriveau said anyone spending time outdoors should wear insect repellent, long pants and enclosed shoes when walking in tall grass, woods or bush.
It is time there was more awareness in our National Press here in the UK too.
An earlier post click here
gives a link into a W5 program
Also an earlier post Research by the Sperlings click here
Abstract: Lyme borreliosis (LB), also known as Lyme disease, is emerging as a serious tickborne illness across Canada. More than three decades of research on LB in North America and Europe have provided a large, complex body of research involving well-documented difficulties at several levels. However, entomologists are well situated to contribute to resolving some of these challenges. The central pathogen in LB, the spirochete Borrelia burgdorferi Johnson et al., includes numerous genospecies and strains that are associated with different disease symptoms and distributions. The primary vectors of LB are ticks of various Ixodes Latreille species (Acari: Ixodida: Ixodidae), but questions linger concerning the status of a number of other arthropods that may be infected with B. burgdorferi but do not transmit it biologically. A variety of vertebrates may serve as reservoirs for LB, but differences in their ability to transmit LB are not well understood at the community level. Persistent cystic forms of and immune system evasion by B. burgdorferi contribute to extraordinary challenges in diagnosing LB. Multiple trade-offs constrain the effectiveness of assays like ELISA, Western blot, polymerase chain reaction, and microscopic visualization of the spirochetes. Consequently, opportunities abound for entomologists to contribute to documenting the diversity of the players and their interactions in this devilishly complex disease.