The persistent problem of Long Lyme disease
There’s a stubborn lack of significant change in Canada regarding the diagnosis and treatment of Lyme disease.
Recently we came across two Lyme disease (LD) stories occurring six years apart to two women in Kelowna B.C. They experienced similar difficulties getting a diagnosis and treatment for disseminated or persistent Lyme disease (PLD).1 2 Both had to take matters into their own hands. CanLyme’s founding President, Mr. Jim Wilson, also from Kelowna would agree,“The more I looked into it, what I found was that it was not the disease that was rare in Canada, it was the diagnosis that was rare.” LD is Canada’s most common vector-borne disease so why don’t doctors know more about diagnosing and treating it, especially since it has been here for at least 50 years -or likely far longer? We need to investigate why there haven’t been any significant changes in Canada and why, with our universal health care coverage, these suffering patients aren’t receiving the care they need in Canada.
The official number of B.C. LD cases since 2006 is 241. Officials only track a few cases that they are absolutely sure of. If we use the multiplier of 13.7 to account for under-detection provided by Dr. Nick Ogden, (PHAC’s chief research scientist), the estimated number of B.C. cases climbs to 3,302 over that time period. There is consensus that 10%-20% or more (about 660) of these patients have become debilitated, suffer a declining quality of life and been forced to leave school, work, or reduce employment and rely on social assistance.
There are some naturopaths and a handful of trained clinicians who can diagnose and treat cases of PLD in Canada but many patients have had to travel out of the country for treatment and eventually returned to health, all at their own expense. Many others were likely misdiagnosed with diseases such as MS, ALS, Lupus, Alzheimer’s, fibromyalgia/chronic fatigue (ME/CFS), rheumatoid arthritis, depression or medically unexplained symptoms. Less than half of patients recall a tick bite or get an identifiable rash of any kind. Not everyone gets a summertime flu-like illness. This is a hidden, ignored epidemic and the numbers just keep escalating. Canada has a big problem of under diagnosis, detection along with undertreatment of LD resulting in increasing numbers of cases of persistent LD (PLD), a condition that isn’t recognized in Canada. This is because the insurance industry red-flagged this condition as being too expensive to treat and the long-term disability insurance industry doesn’t want to underwrite the costs of treating PLD.
Canadians have made it very clear that we want our own made-in-Canada set of LD guidelines. Sadly most infectious disease and public health doctors promote the narrow, acute only (the rash) perspective of LD favoured by the long-term disability insurance industry which relies on narrow case definitions, flawed guidelines and tests that miss a third of Canadians that truly do have the disease.
Long-COVID has shaken doctors out of their comfort zone. All pandemics from polio on down have their chronic forms. Government and medicine have failed us; we are all being gaslit.
LD is the only infectious disease that comes with time limits. Sadly the Association of Medical Microbiologists and Infectious Diseases (AMMI) Canada and provincial regulators have been successful in investigating most practitioners who treat their patients beyond what is suggested in the International Infectious Diseases Society of America (IDSA) Guidelines favoured by industry. These physicians are faced with loss of licensure or signing silencing agreements. Now most Canadian physicians are too afraid to treat. PHAC has prioritized the preservation of the antibiotic supply over returning Canadians to health. The insurance industry has long understood it can control medicine if it can control the guidelines. Guidelines are meant to help patients and assist physicians; they should be free of industry influence.
Now that the American medical system is becoming unglued, it is hard to tell what the future will hold. It is unlikely that PHAC will step up to fill the void and agree to have its mandate expanded. PHAC will continue to ignore the evolving science around LD and stick to their role of promoting healthy living and prevention while continuing to do modelling and surveillance but not engage with researchers and members of the Lyme community in any meaningful manner.
Many holding prominent roles in provincial health departments and PHAC are highly conflicted, taking their direction from American IDSA.
This is a quandary for our elected representatives who have been forced to look the other way. It makes no sense to keep handing the problem back to those causing it as happened following the 2016 Conference to Develop a Federal Framework on Lyme Disease. The final status quo Framework is a travesty, was completed without consultation or transparency, didn’t follow the Summary Report and could have been written a decade earlier. It was designed to convince the politicians that they were in good hands.
No new made-in-Canada guidelines were produced and the Framework is not in compliance with the Act. The $4 million arising from the conference was granted to a single research team after the Canadian Institutes of Health Research (CIHR) decided that a competition wasn’t needed. The Canadian Lyme Disease Research Network (CLyDRN) is made up of paid employees of PHAC, provincial public health officials and status quo researchers. This group has used the money to do additional tick surveillance, control the agenda and cement old ideas. They haven’t conducted any research on problems that patients and clinicians consider important. Patients just want to be returned to health. So far the ticks are winning.
We are all paying for medical services, salaries and medical education through our taxes. Medicine is self-regulating but that only works if everyone is behaving ethically and altruistically. Certainly some degree of self-regulation will always be required but it’s time for our elected representatives to lead because that is why we elected them. Family doctors are not responsible for this situation and would like to help their suffering patients but are prevented from doing so by powerful forces at the top with their close ties to industry.
There are no simple cookbook answers. Cases vary and are often complicated by the presence of co-infections such as Anaplasma and Babesia.
“In medicine nothing is absolute, the science is never settled and patient care needs to be as individualized as the individual.”
L. Marcum
Our public health agencies should attract and encourage people with diverse opinions on the subject of Lyme and be encouraged to express their views and explore new areas of research on Lyme and tick-borne diseases.
The Trump regime recently announced it will no longer fund research into infection-associated chronic diseases such as Lyme and ME/CFS and long-COVID. We need Canadian politicians who are willing to step up to the plate and take on the recalcitrant PHAC bureaucracy that has proven refractory to change. Likely a search will be required to find a public health doctor who doesn’t owe their loyalty to industry and the IDSA, someone who follows all the science, not just the edited bits that AMMI/IDSA present. AMMI/IDSA have demonstrated they can do a lot of harm in medicine if they prune the evidence they promote from all available science.
“In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”
Dr. Ken Liegner
Related
Why Canadian healthcare fails Lyme patients and why they seek healthcare elsewhere, CanLyme Team 2024 May 07: https://canlyme.com/2024/05/public-healthcare-fails-lyme-patients-seek-treatment-elsewhere/