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No Warranties or Representations
Lyme Disease symptoms vary from person to person. (lymes disease lyme's disease lime disease limes disease)
The data and information presented in this web site are presented in good faith and believed to be accurate regarding Lyme disease (commonly misspelled lymes disease lyme's disease lime disease limes disease) and other related diseases. Any and all liability for the content or any omissions including any inaccuracies, errors, or misstatements in such data or information is expressly disclaimed. The web site is compiled for the sole purpose of informing community members of resources and information pertaining to Lyme Borreliosis Disease and its coinfections. Lyme disease symptoms may vary from person to person.
The Canadian Lyme Disease Foundation, Directors and members are not liable for any direct or indirect damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action arising out of or in connection with the use or performance of information available from this website.
Consult a qualified Lyme ( Borreliosis ) Disease literate doctor for medical advice if Lyme Disease is suspect to discuss your Lymes Disease Symptoms.
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Canadian Public Health Laboratory Network guidelines for Lyme disease.
In March of 2006 the Public Health Agency of Canada (PHAC) held a conference on Lyme disease. Public health officials and laboratory people from across Canada attended. We at the Canadian Lyme Disease Foundation (CanLyme) were given 10% of the seats. This was to be a consensus conference to attempt to arrive at consensus on the laboratory, clinical and surveillance guidelines for Canada.
"Billions of dollars are spent on health care and research in Canada with amazingly little public oversight, much to the delight of business interests. Very little attention is paid to those who decide where to spend our dollars.
The Canadian Foundation for Innovation set up by the government of Canada, gave 3.8 billion taxpayer dollars out since its inception in 1997, to only 128 institutions. A pretty elite club. No doubt a funnel through which tax dollars flow into hands of business via our colleges and universities. This is not necessarily a bad thing, but research scientists and those who have been mingling for years with the business machine are not those we want reviewing who gets the money. We have to look at publicly electing people to these positions, and restricting terms of service of those allowed to review research proposals.
In just one year, 2005-06, the Canadian Institutes of Health Research spent almost a billion dollars. What have taxpayers seen for all this money? How much research is guided by and for the benefit of business? Victims groups MUST be active participants in deciding where research dollars go. (Not just those from the select few present big dollar charities that have been around for decades)
We have been told that out of both of these mega government institutions' huge budgets there will be NO research dollars available to assist CanLyme in establishing a research centre and treatment clinic in Canada that will truly investigate Lyme disease. These beaurocrats have decided they are going to continue to piecemeal out research dollars rather than confront disease head on. Farming sickness until a profitable way of dealing with it is found seems more appropriate to those who manage our tax dollars allocated for medical research. Brazil, on the other hand identified they had a rapidly growing problem with Lyme-like disease, a possible gene on/off switching change of the same Lyme bacteria as we have. They created such a facility and are taking this very seriously, as are other countries of the world.
Our health care budgets are going through the roof and there is no research money to spend looking for the true impact that the fastest growing zoonotic disease in the world has on the human body today and in the future. We'll spend some token dollars chasing ticks, and some dollars looking for a drug (not enough in that regard)...but to get serious and identify the scope of this disease will not happen from their funds, according to PHAC and CIHR. (Lyme bacteria and other borrelia have been found to play a role in approx. 200 diagnoses of diseases and conditions that collectively will bankrupt our system in coming decades)
CIHR spent 194 million dollars on strategic initiatives in 2005-06 alone. Lyme disease groups have been asking for serious strategic research dollars for going on to 20 years.
Canada no longer has a socialized health care system and hasn't for years, we instead run a social event, a wide-open playground and a "good old boys" club for business. Our government medical directors are globe trotters, associating within the medical business machine which includes the pharmaceuticals, vaccine manufacturers, medical insurers, the World Health Organization and the CDC. Here in Canada the lowly sick are simply an annoyance and the CPHLN guidelines reflect that reality. They complain that we take up too much of their valuable time. Lyme disease has spread un-checked under their watch, is under-diagnosed, and has been shown in research to be present in several disease processes of which Canada has some of the highest rates in the world of, all while making the medical business machine very rich. Canadians are dropping like flies but still no strategic research initiative. Gotta wonder who is in control."
Jim Wilson, president CanLyme
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CanLyme used 4 of 7 seats to bring experts in from the United States. Our experts came with extensive backgrounds in laboratory, clinical, and legal matters of Lyme disease.
Although we were out-numbered 10 to 1 at the conference, our experts' presentations were strong enough so that when it came time to vote on consensus, no consensus was arrived at in accepting either the clinical or the laboratory recommendations being put forward. This lack of consensus occurred for for many reasons. It was resolved that committees were to be formed to create made in Canada guidelines (including laboratory guidelines) and that we at the Canadian Lyme Disease Foundation would have representation on the committees.
At the conference, in the laboratory plenary break away discussion group it was very clear early on that there would be no consensus. Committees were to be struck to set made in Canada criteria, and we were to be a part of the committees. Instead, those government laboratory leaders who pushed only the U.S. CDC criteria went home and promptly wrote and published the below guidelines side-stepping any input from us and our experts. They did this under another federally funded body called the Canadian Public Health Laboratory Network (CPHLN). The committee co-chairs from the CPHLN for the newly published guidelines were Dr. Harvey Artsob of the Public Health Agency of Canada and Dr. Kevin Forward of the province of Nova Scotia both of whom sat in at the laboratory plenary discussion group at the conference.
Outer surface protein A (OspA) is a very significant and recognized confirmatory indicator of b. burgdorferi (the bacteria that causes lyme disease) exposure. OspA has been used in research for many years in this capacity and is so specific to B.burgdorferi (along with outer surface protein B (OspB)) that OspA was the foundation of the vaccine introduced in the late 1990's. Here is a quote that sums up the position of scientists from around the world, [re: Bands 31 OspA and 34 OspB] "However, while the absence of either of these bands from a patient's immunoblot result does not rule out Lyme disease, their presence is hardly meaningless. Thus, many Lyme disease experts believe it is a serious mistake to exclude these two antibody proteins from the list of significant bands. The CDC's decision to do so seems particularly strange in light of the fact that it is the OspA component of Bb that is being used as the stimulating antigen in the ongoing experimental Lyme disease vaccine trials. As one immunologist remarked shortly after the 1994 CDC conference, "If OspA is so unimportant, then why the heck are we vaccinating people with it?"" (taken from this document)
Neither our provincial, nor our federal labs bother to report on antibodies to these highly specific proteins. We want these included in Western Blot criteria, and we do not recommend having to have a positive screening test before running a Western Blot test. Neither test is fool-proof therefore you increase the risk of compounding the number of true positive tests missed by requiring both to be positive. The screening test has been shown time and time again to lack sensitivity. In 2005 John Hopkins researchers published the findings of their two year study1. Serology alone did not do well.
However, the CDC/CPHLN logic is that because the literature is inconclusive, err on the side of harm. Here is a quote from Barbara Johnson of the CDC in which she acknowledges the confusion over sensitivity / seronegative tests, "The recent literature ranges widely in conclusions about test sensitivity, which is not surprising since sensitivity varies depending on the proportions of people in the study with early and late disease."2. What is surprising is that they still recommend the two-tier approach for testing despite all recent literature in the past decade that indicates a much more aggressive, mult-test approach is needed. The many infected people that the two-tier method misses are simply collateral damage, we suppose.
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"The failure to provide objective and unbiased health care information violates the right of the
individual to make autonomous decisions. Misleading information erodes public confidence in
the government, forecloses democratic debate about health care values, suppresses market place
autonomy and research, and may empower some stakeholders at the expense of others. When
health care issues stir heated public debate, as Lyme disease does, health care communications
create ethical dilemmas. Misleading information can constitute a form of coercion when the
distortion provokes fear or anxiety." Lorraine Johnson, JD, MBA Executive Director, CALDA
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We expected to be able to have open and honest discussion in committees.
There are extremely important matters that need to be discussed, and should be looked at in great detail.
Here are just a few questions that come to mind: What is the cost in terms of human suffering of following a poor testing algorithm such as that outlined below in the CPHLN guidelines? What is the cost effectiveness of the two-tier testing when costs are factored in to account for the long-term health care of all those missed following the CPHLN algorithm? As the disease spreads, which it is now and will continue to do so in the foreseeable future, what will following the CPHLN guidelines cost businesses who are already struggling with a reduction in available manpower? What is the cost in terms of lost income tax on those chronicly ill victims? Then, on the flip side, what are the long term cost benefits to running the more aggressive testing methods up front? We want serious answers to those serious questions.
Other important considerations include the harm done by applying the need for a patient to have been in a known endemic area in order to even be considered for testing. Many Canadians are now being denied testing thanks to the CPHLN's poorly thought out guidelines, so the costs we questioned above are beginning to escalate. Statements in the guidelines such as "When patients have a credible possibility of exposure to ticks and..." make us wonder what book it is the CPHLN is reading from. Do they not know that years of well published research clearly show that ticks are spread at random by migratory birds? What the heck is "credible exposure" to a randomly spread disease? What level of expertise was required to incorporate that into the guidelines that would have been too perplexing to us simpletons?
These issues are not up for open discussion with the likes of the CPHLN apparently. We disagree. The Public Health Agency of Canada has as a part of its mandate to work and consult with stakeholders (we can think of no more ultimate stakeholder than the victim). It should not, by the formation of a secretariat such as the CPHLN, be allowed to sidestep its responsibility to taxpayers. That may be a legal matter for someone else to decide.
The CPHLN guidelines are poorly researched, poorly referenced, and impinge on clinical diagnostic criteria yet the authors are not practicing clinicians and have very little if any clinical history with Lyme patients. Another example of just how poorly written the Canadian guidelines are is this outrageous statement, "For example, a patient residing in an area where blacklegged ticks are established who presents with a typical bull's eye rash in July should be considered to have Lyme disease until proven otherwise." July is only one of the months to have the rash and the fact that these authors narrow this speaks volumes as to their expertise, or intent. The guidelines are a case of the blind leading the blind. Here is another outlandish quote, "Lyme disease incidence is...very low or zero in most parts of central Canada..." In reality ticks that carry Lyme disease are spread at random everywhere in Canada up to at least the 55th parallel by migratory birds. With a randomly spread disease there can be no areas of zero risk. Stating an area is even low risk is dangerous as it clearly sends the doctor the wrong signal. Ones own backyard garden may become high risk overnight if birds have deposited infected ticks that have now infected the rodent population on the property. The above quotes are consistent with the pattern of trivialization of Lyme disease in Canada that victims groups have been trying to overcome for 2 decades.
For a very pertinent read, read this journal paper,
"Guidelines have done more harm than good".
One really must ask...why? Why are tax payer funded employees setting health policy for which they have no particular expertise in and more importantly why did they rush to do this in defiance of the mandate of the Public Health Agency of Canada which is to include the stakeholders in matters of health? Why is the Public health Agency of Canada funding an organization that ignores their mandate? Why is an author of these guidelines also on the ad-hoc committee and contributor to the Infectious Disease Society of America guidelines that are now under investigation by the Attorney General for the state of Connecticut (the town of Lyme, Connecticut is where the name came from)? To understand this bizarre and controversial situation please read this and give it some thought.
The victims of Lyme disease in Canada include lawyers, doctors, engineers, government employees, labourers, conservatives, liberals, socialists, catholics, protestants, muslims, agnostics, athiests, etc.. We are the ultimate stakeholder and because we have the expertise to understand how poor the CPHLN science is, we were removed from the equation. What influence can taint medicine so far? Who stands to lose (money) or perhaps in Canada, respect?
An August 8, 2007 press release indicates President George Bush was treated for Lyme disease based solely on the rash, but had this been Canada, and it was not someone with clout, would the person be treated?
The new Canadian laboratory guidelines make this very unlikely in 99.99% of the country.
| "Scientific evidence can be valuable if it is used—along with information on best practices, outcomes research, and clinical experience—to inform physicians about treatment options. But cost considerations must be carefully separated from a review of scientific data to protect the reliability of the research. If not, “evidence-based medicine” is likely to become not a guideline but rather a straight-jacket and an excuse for denying care that is medically necessary and appropriate." Laura Remson Mitchell
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According to the CPHLN guidelines, a doctor must first recognize symptoms of a disease they have been told for years does not exist in Canada (except in the rarest of circumstances). Doctors (far too many) are still telling patients there is no Lyme disease in their area. According to these guidelines the doctor has to ask the patient whether they may have been to an area that the doctor has no knowledge of as to whether ticks are present there or not.
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