Sept. 29, 2010, 6:43 a.m.
By Erin Ellis, Vancouver Sun August 16, 2010
Click to watch this story's video: Treating Lyme disease.
What if you picked up a crippling bacterial disease, but your doctor says it's virtually impossible you have it? Or the doctor agrees you're sick, but won't treat you for fear of being drummed out of the profession?
Lyme disease patients in British Columbia say that's what's happening to them, and they're being forced to look outside the mainstream medical system for help.
While health officials say a few hundred Canadians contract Lyme disease each year, patient advocates claim that's a drastic underestimate.
They say they're given inadequate tests, denied medical treatment or told something else is causing the muscle and joint pain that leaves them unable to walk. And the few doctors willing to treat them with long-term antibiotics -- sometimes administered for months intravenously -- fear repercussions from their licensing bodies.
On the other side, public health officials say the risk of picking up Lyme disease here is minuscule, testing methods are accurate and there is no evidence that long courses of antibiotics are helpful. They blame questionable blood tests from private U.S. laboratories for convincing people they have Lyme disease when they're really suffering from another mysterious condition.
Robbin Lindsay, a research scientist with the Public Health Agency of Canada, says he deals with a number of infectious diseases, including the potentially fatal mosquito-borne West Nile virus, and nothing else stirs up the same level of passion.
"I don't understand the level of emotion that's involved there," he said in a telephone interview from the national microbiology laboratory in Winnipeg.
"I suppose it's the belief from the advocates that they are right and the medical community and the public health people are wrong. And that they are ill and they're not getting any help. I can certainly appreciate the frustration they would feel, but I think what they really need to do is to work within the medical system."
Easier said than done, according to Mary de Lisser of Abbotsford, who became ill in 2002 after being bitten by an insect while camping near Courtenay on Vancouver Island. She developed a distinctive bull's-eye-shaped rash that often -- but not always -- follows a bite by an infected tick. She went to a walk-in clinic, but no one recognized the signs. She saw 32 different doctors over the next 10 months as her pain and fatigue increased, landing her in a wheelchair, before finding a photo of the rash online and deciding to pursue Lyme disease as the possible cause. The screening test for Lyme disease used in B.C. came back negative so no infectious disease specialist would see her.
"The tests in Canada are garbage. Getting a positive is like winning the lottery. If they put a poor test in place they keep the numbers down to rare, as they like them to be," said de Lisser, 58.
The BC Centre for Disease Control recorded 10 cases of Lyme disease in 2009 and six in 2008. The Washington State Department of Health recorded 16 cases in 2009 and says 13 of those were contracted in other states.
The Public Health Agency of Canada says there are 120 to 150 laboratory-confirmed cases in the country each year and about half of those were picked up outside Canada. It adds that this is likely an underestimate because it doesn't include clinical diagnoses reached by doctors who treat patients without testing -- particularly in the early stages -- after seeing the distinctive rash and hearing that they have been in areas where the infected ticks are known to live.
This is changing, however, as Lyme disease is now a reportable disease in Canada with data now being collected for 2010.
What will never be known is how much money Canadians are spending either in the U.S. or for alternative therapy in Canada that's not covered under medicare.
Shannon Goertzen of Richmond is being treated by Dr. Steven Harris of Redwood City, Calif., who specializes in Lyme disease, and an unnamed local doctor who writes the prescriptions for her antibiotics. She has administered an IV drip to herself each day at home for two years.
She says she's spending up to $20,000 a year for her treatment, but is now able to enjoy life again after being bed-ridden for months at a time during two years of seeking help.
Goertzen believes she was bitten in Whistler, as were her two sons, who are also ill.
Heat from colleagues
Before Goertzen travelled to the U.S., a Richmond-based infectious disease doctor agreed to treat her because she tested positive for another tick-borne disease, but not Lyme. The doctor refused to treat her over the long term, however.
"He kept saying you don't have Lyme disease ... then he said he'd give me 30 days of IV treatment," said Goertzen. "He told us point-blank: 'You don't know how much heat I'm taking from my colleagues for treating you.'"
Jessica Rain, 41, of Vancouver, has had a variety of health problems -- from fever and chills to vertigo and headaches -- for the last seven years after being bitten by ticks in the U.S. and B.C. Interior while working on film locations.
She's spent about $10,000 on homeopathic therapy over those years -- which she said had limited results -- and is now launching into another alternative therapy of low-dose antibiotics at a private clinic here which she expects will cost her thousands of dollars a year. That's still a promising alternative, in her opinion, to travelling to the States for consultations costing $500 a visit. "You're looking at blowing $50,000 for treatment over a few years."
"It's a scary society out there when our governments can choose what they want to treat and what they don't want to treat. It's not up to the governments, it's up to the doctors and the doctors' hands are tied," she says.
"The fact that the denial here is so massive, it boggles the mind."
De Lisser, Goertzen and Rain, like many other Lyme disease activists, did not have a positive result for the disease using the ELISA blood test -- short for enzyme-linked immunosorbent assay, which measures antibodies to Lyme disease in the blood. They say it should be replaced with the Western blot blood test that Canadian doctors also use, but only after a positive ELISA screening test.
Many patients pay about $500 for their own Western blot tests from private U.S. labs, but find those results are often ignored here. (De Lisser had an equivocal result on a Western blot; Goertzen and Rain's test came up positive.) They say the current system drastically limits both the reported number of cases and any medicare-funded treatment.
But Lindsay says the two-step Canadian system is superior to any single test.
"I worry that when people get tests outside the country that a greater percentage of those may be false positives," he said. "Either our tests on this side of the border don't work or these people are getting false positive results from south of the border."
Doctors reluctant to treat
Dr. Muhammad Morshed of the BC Centre for Disease Control says the reason rates are low is that far fewer ticks in B.C. are carrying Lyme disease, compared to the eastern U.S.
And doctors here are knowledgeable about the disease, Morshed says, adding that many will treat early-stage cases with a short course of antibiotics. Those patients will not test positive -- if they are tested at all -- because it takes 10 to 14 days after infection for it to be detectable in a blood test.
Dr. Ernie Murakami disagrees that doctors in Canada have an up-to-date understanding of Lyme disease. The retired physician from Hope now volunteers his time to help Lyme disease patients through a not-for-profit society.
Murakami, 79, says he was forced to give up his medical licence two years ago after the B.C. College of Physicians and Surgeons repeatedly questioned him about his treatment of Lyme disease patients.
"The doctors have a big apology to give the general public," he says. "Infectious disease doctors don't even believe that chronic Lyme disease exists. Their knowledge is way, way behind."
Even if doctors are convinced a patient has Lyme disease, they are reluctant to treat it if it has advanced beyond the initial stage that requires only a few weeks of antibiotics, says Murakami.
"Doctors in Canada are petrified to talk about Lyme disease," he says.
The College of Physicians and Surgeons refuses to comment on Murakami, but says it recognizes that some cases of Lyme disease require lengthy use of antibiotics.
Murakami says the college began investigating him after a young woman in Kelowna died in hospital while receiving intravenous antibiotics. Her doctor had spoken to Murakami on the telephone for advice, but Murakami says he was not actively treating the patient. She died after having an allergic reaction to the antibiotic and a nurse accidentally administered adrenalin intravenously, he said.
The Infectious Diseases Society of America says most cases of Lyme disease can be cured with less than a month of antibiotics and calls longterm treatment "unwarranted and potentially dangerous." It also questions the existence of chronic Lyme disease. The society, which represents infectious disease specialists, stuck with that opinion in April after it asked a special panel to look into conflict-of-interest allegations from the State of Connecticut.
Connecticut Attorney-General Richard Blumenthal said in a 2008 news release that he wanted the investigation because insurance companies in the U.S. were denying longterm treatment to Lyme disease patients based on the society's guidelines. "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."
Eight states on board
Eight U.S. states -- Connecticut, Maryland, Massachusetts, Minnesota, New Jersey, New Hampshire, Pennsylvania and Rhode Island -- have passed laws to allow doctors to prescribe long-term antibiotics for the treatment of Lyme disease.
Dr. Maureen McShane, a Montreal resident who practises in Plattsburgh, N.Y., contracted Lyme disease in the Laurentian Mountains in 2002 and has now treated about 300 patients -- many of them Canadians -- with antibiotics. U.S. physicians have been hit with massive legal bills in the fight to keep their licences after doing the same, she said in a telephone interview from her home.
Lyme disease and other tick-borne illnesses are poorly understood, she believes, and need more research before ruling out antibiotics which she says work in 80 to 90 per cent of cases.
But Lindsay, of the Public Health Agency of Canada, disagrees that the benefits outweigh the risks.
"Antibiotic therapy in the long-term -- especially intravenously -- is not without its risks," he said.
"There have been no clinical trials to my knowledge that suggest that more than the standard duration of treatment provides any additional benefit, so again you're into an area that's very controversial."
He also noted a case in which the Minnesota Department of Health investigated the death of a 52-year-old woman who was being treated with oral antibiotics for Lyme disease. She developed a so-called superbug, C. difficile, after 2½ months of taking the drugs and died of heart failure in hospital.
Some new players will be added to the mix next month when naturopathic doctors in B.C. who have passed a qualifying exam will be allowed to prescribe antibiotics for the first time.
Murakami says they might be the next hope for Lyme disease patients.
- - -
The latest on the Lyme disease file
2010 -- Lyme disease becomes reportable in Canada alongside diseases such as tuberculosis and AIDS.
April -- The Infectious Diseases Society of America reissues treatment guidelines saying lengthy antibiotic treatment of Lyme disease is potentially dangerous.
May -- The State of Massachusetts becomes the eighth U.S. jurisdiction to pass a law giving protection to doctors who prescribe long-term antibiotic treatment to Lyme disease patients.
July -- Public health officials in Manitoba issue a letter to doctors saying ticks carrying Lyme disease can be found anywhere in the province. It advises doctors to treat patients displaying a circular rash with antibiotics to prevent advanced symptoms of Lyme disease that include neurological or arthritic conditions.
September -- Naturopathic doctors in B.C. who pass a certification exam will be allowed to prescribe oral antibiotics following a change to the Health Professionals Act.