Disease expert dismisses Lyme diagnosis

 

Goertzens are suffering from something else, top doc says

 
 
 

The sick Richmond family featured in a News' series and dozens of letter writers from around B.C. and across Canada do not have Lyme disease.

That's the professional opinion of the province's top disease expert, Dr. Bonnie Henry.

Three members of the Goertzen family -- mom Shannon and sons Taylor, 17, and Parker, 10, have all been diagnosed in the U.S. with Lyme or Lyme-related diseases.

The Goertzens, and almost everyone else who felt compelled to write to the News after the family's struggle was featured last month, have had to travel to the U.S. to be diagnosed and treated for Lyme disease, accusing the B.C. and Canadian medical profession of being unable or unwilling to deal with the condition.

While Henry -- director of Public Health Emergency Services at the BC Centre for Disease Control (BCCDC) and assistant professor, School of Population & Public Health at UBC -- acknowledged that the Goertzens and the people who contacted the News are suffering from some kind of condition, she's adamant it's not Lyme.

"I think it's the view of a small number of people that are particularly unhappy with their relationship with their physicians here," Henry said, referring to the Goertzens and the people who contacted the News about their experiences with Lyme, a tick-borne disease that can, over time, ravage both body and mind if left untreated.

"When people don't hear what they want from their physician, they get frustrated and go looking for the answer they want to hear. It's also very frustrating for our physicians. But I think it's because of a dysfunctional relationship with their healthcare provider.

"There are lots of pain and fatigue issues that we simply don't have the answers to."

"People are looking for something that's going to be the magic answer and we do still need to find out what's affecting these people. But I'm convinced it's not Lyme."

Henry suggested that the volume of emails and letters that poured into the News from Lyme disease sufferers was probably due to a "well organized" effort from Canlyme, a B.C.-based support network for Lyme disease.

The Goertzens and many of the fellow Lyme sufferers who contacted the News have shown significant improvement since heading south of the border to get tested, diagnosed and treated.

But Henry said that does not prove that they have Lyme disease and claimed for every case of "improvement" there is at least one example where treatment is not working.

"You have (U.S. doctors) saying to them 'you have a treatable condition and we can help you,'" Henry said.

"Perhaps it's a placebo effect, I'm not sure. The medicine they're getting may have an anti-inflammatory effect on some of their symptoms and they're getting told by people down there 'we can treat you,' which can be making people feel better.

"Then we have a group of people with a variety of debilitating conditions and who don't have a positive test for Lyme and for some reason, most of the time they're getting prescribed long-term antibiotics.

"I don't agree with this, we need a more holistic approach.

"What we don't hear is the stories about people whose treatments in the U.S. haven't worked. For that reason, I firmly believe the statistics are skewed in the U.S."

The statistics Henry refers to are the comparison in reports and subsequent confirmed cases of Lyme disease between Canada and the U.S.

In the northern U.S. states, thousands of cases of Lyme disease are logged every year, compared to a few hundred in Canada, mostly in Ontario.

But Henry heavily criticized the hundreds of licensed laboratories over the border, which have been delivering positive interpretations of test results for people suspected of having Lyme disease.

And she claimed the push in the U.S. to have the Western Blot test as the first and only test for Lyme -- in Canada you have to test positive in a broad spectrum Elisa test first, before moving onto the more specific Western Blot -- is nothing more than one big marketing ploy.

"We need to be very careful about the tests carried out by the labs in the States. Most of these lab results are wrong," she said.

"They're not using the standardized methods for interpreting the tests and that's why there are so many positive test results down there. The Elisa looks for anything remotely like the antibody, whereas the Western Blot will just look specifically for Lyme and HIV.

"The push to have the Western Blot as the only test is a marketing ploy in the U.S., which is preying on people that are looking for answers."

The parents of young Parker Goertzen -- who is sometimes in so much pain he has to crawl to the washroom or use a wheelchair -- are among the hundreds of people who didn't get any answers in B.C.

On one occasion, Parker's parents, Shannon and Graeme, were told by a doctor at Children's Hospital that they would, in light of being unable to diagnose Parker with anything, refer him to a pain management specialist.

"There are lots of things that we've had trouble explaining, such as autism and chronic fatigue syndrome," Henry said.

"With such things, we've found ways to minimize and manage their pain."

During the News' Lyme disease series, the Public Health Agency of Canada warned that Lyme could, in 10 or 20 years' time, become a major burden on the Canadian healthcare system.

Henry assured that, should the disease become more prevalent in the province, the BCCDC is ready to handle it.

"It is something we're concerned about and we've been doing research as to the tick population's growth," she said.

"But on this side (West Coast), there are not a whole lot of areas where the tick can expand to and therefore not too many more people will be exposed to Lyme. Whereas in Ontario, the tick is getting closer and closer to areas of population.

"Our job, in that context, is to increase people's awareness."

And in a yet-to-be published survey, Henry said the BCCDC recently canvassed around 2,000 B.C. physicians.

"We have put out the messages to physicians here in B.C. and we've carried out a recent survey of those physicians and it seems to me that they have a good knowledge of Lyme," Henry claimed.

"Two thousand physicians have told us that they have a high level of Lyme awareness and feel they're very able to diagnose and treat Lyme disease in their practices."

Asked why it is then that people like the Goertzens are still suffering and have to spend their life savings traveling back and forth to California for treatment, Henry conceded the Canadian medical profession doesn't always have a solution.

"We're not very good at helping people when we don't know what it is they have."

 
 
 
 
 
 
 

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