Is Lyme disease underdiagnosed or overestimated?


This article has been closed to comments. 22 comments

  1. Ruedi

    I would be great to compare diagnostic procedures with those in countries where Lyme disease is really frequently diagnosed and treated, including associated tick transmitted diseases. Uncertainty is exploited by quackery and unregulated laboratories.

    • Bob

      Where would that be?

    • Sheri Souch

      It is not necessarily the testing, but the interpretation that causes problems. Here is an example of what Scotland found:

      “It was found that many classic cases of Lyme disease were still seronegative. This raised a number of key questions. Were patients tested too early? Did they receive the proper treatment? Or were they not using the best strain of B. burgdorferi for the preparation of their Western blot? There was concern that they were missing cases of B. afzelii and B. garinii.

      A study was carried out (2007-2009) that investigated the use of B.burgdorferi sensu stricto and B. afzelii isolated from local ticks within the in-house Western blot. The study showed that the use of these local isolates and the revision of interpretation criteria increased Western blot sensitivity and improved patient management.”
      http://www.cihr-irsc.gc.ca/e/49713.html#tc5
      We may be having this problem in Canada, specifically with Borrelia miyamotoi and other local strains. The big challenge for our country is that it has such a vast ecology.
      (Oh . . . and by the way, the US lab referred to in this article is actually regulated.)

  2. Donna Lugar

    Perhaps since this Public Health Canada Adverse Teaction Newsletter was issued, changes have been made, but I don’t believe so. As you can see, there are 3 possible reasons for a false negative. For those people that have been sick for quite some time prior to investigating Lyme, many would have been prescribed antibiotics for any number of things. As well, as more and more ticks arrive via migratory birds, the genetic diversity would no doubt increase – http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php

    I was clinically diagnosed with tick borne diseases in 2011. I had 48 symptoms, affecting all systems, by that time. I had been previously been diagnosed with Hypothyroidism, TMJ, reduced breathing (no name given), the possibility of Irritable Bowel. Symptoms got steadily worse over a period of years! Upon the start of treatment, many of the symptoms resolved. However, the Canadian Doctor that was treating me closed his practice before I was completely well. I have been “managing” symptoms since then.

    We have a huge problem in this country. Please do a bit more research!

  3. Emily

    1 out of 40 testing positive by CDC standards is less then .5% chance of a false positive. Which sounds more reliable then the 70-100% accurate.

    • Wendy Glauser

      Regarding the 70-100%, that is referring to ‘sensitivity’ or how often the tests report false negatives – so that particular stat is not related to false positives. In terms of false negatives, the false negatives get closer to 0% (and accuracy closer to 100%) the longer a person has symptoms.

      • Sheri Souch

        Not really true, Wendy. Have a look at the testing insert. Sensitivity drops off after a year. Beyond that, there have been no studies.

      • Sheri Souch

        Borrelia burgdorferi is only one pathogenic borrelia that is infecting Canadians. Borrelia miyamotoi is one example of another tick-borne illness infecting Canadians. It can cause severe illness in humans but “Lyme” testing will not pick it up. Borrelia miyamotoi (Bm) was found in all but one province in Canada: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4001108/
        If a patient tests negative for “Lyme,” there is still the very real possibility that he/she is infected with Bm or another borrelia strain. http://www.doh.wa.gov/…/4300/ZD-2015WorkshopPres10.pdf
        Unfortunately, as this article plainly demonstrates, thinking is so narrow when it comes to “Lyme” disease, that these infections are being missed.
        Warning Canadians about “Private US Labs” is a red herring. Doctors who understand borrelia infections know that western blot banding information provides them with a more detailed picture of what is going on with his/her patient. It is not the test, but the interpretation of the test that drives diagnosis and treatment. In Canada, if the screening test is negative, there is no western blot performed, and, if a western blot is performed, banding patterns are not reported, only an interpretation. This testing protocol is causing problems, given the strain diversity of borrelia infections.
        Wendy, Maureen and Mike, I hope you can have a look at what was discussed last year at the Canadian Institute of Health Research: http://www.cihr-irsc.gc.ca/e/49713.html
        I will leave you with some quotes from this Canadian think tank:
        “. . . it is possible that a small proportion of patients with late-stage Lyme disease may also test negative. As well, the differences in severity, types of symptoms suffered and length of illness across a broad span of patients are not clearly understood. More research is necessary to improve diagnostic testing sensitivity and to gain a better understanding of how Lyme disease symptoms present across a wide range of patients in order to better diagnose patients.”
        “Although there are data to suggest the performance of the C6 ELISA is affected by genomic variations in the different strains of B. burgdorferi, the performance of Western blots is clearly affected. The impact of biodiversity and the Canadian strains of B. burgdorferi on serologic testing should be further studied.”
        “The publication of defined endemic areas often lags behind the actual number of regions with infected ticks which makes the use of endemic regions to inform treatment decisions difficult. The definition of an endemic region requires refinement (e.g. 16 ticks found vs. 600 ticks found).”
        “There is a need for more comprehensive “active surveillance”. Given the deficit of ticks available for study, continuing solely with a passive surveillance system will limit the ability to determine tick species and the infections they may carry.”
        The bottom line is that, because there are so many holes in knowledge of this disease, in both diagnostics and treatment, patients are left to find what is best for them. I can tell you that, had I listened to the Infectious Disease doctor who told me I did not have a borrelia infection, I would not be typing this. I was severely debilitated with a “text-book” case of “Lyme,” right down to the swollen knees, bull’s-eye rash and “Lyme” carditis, yet tested negative on the screening test. An appropriate diagnosis and long-term antibiotic treatment saved my life.

  4. Susan F

    So is this over estimation theory wrong when you look at Kris Kristofferson who was diagnosed and treated for Alzheimer’s for years but is now getting better with the diagnosis and treatment for Lyme Disease?

  5. Coelleen

    These “facts” are just not true. Here in America the CDC admits their two-tiered tests are for surveillance purposes only, and doctors SHOULD NOT rely on these tests for diagnostic purposes. There is also a written consent form for anyone being tested by CDC guidelines that says test results can be inaccurate and negative lab results may not be conclusive for the absence of Lyme.

    There are also peer review journal articles that conclude someone with late-stage Lyme will no longer produce antibodies to the bacteria, therefore testing will produce a false-negative. So if the disease is tested BOTH too early or too late a false negative will result. I am proof of both examples. I was definitely bitten, but no rash was found because it was on my scalp under hair. I had the early symptoms and was tested within a week of the bite. Antibodies were not yet present. I kept having symptoms of fatigue, fevers, joint pain, numbness and weakness but doctors refused to retest me for 3 years. Finally, my family doctor tested me. Luckily the CDC surveillance test, which only tests for one species of the borrelia bacteria came back positive. I was treated with a two week course of IV antibiotics but continue to experience all listed symptoms plus new ones including shortness of breath, joint breakdown (have had multiple joint replacements), and neurological symptoms such as racing thoughts and brief altered reality. I have now had Lyme for 7 years and tests sometimes come back positive and sometimes negative. I have never been reinfected.

    Final note: I live in central Ohio which is not yet considered endemic, but it only took one tick one bite to infect me. I’m either highly unlucky, or Ohio is actually endemic for Lyme. Ohio is not far from Canada, and ticks do not respect national borders. Canada, I believe you have a problem with denial.

    • Wendy Glauser

      I am sorry I am not able to respond to all of the references that will be cited in the comments.

      However, since it is a common concern that the CDC said two-tier testing is for surveillance purposes and not diagnostic purposes, I would like to respond to this. The CDC in fact states that two-tier testing IS meant for diagnostic purposes, but that two-tier testing may be used in slightly different ways depending on whether the purpose is diagnostic or surveillance.

      “One misconception is that 2-tiered serologic analysis is intended only for surveillance, rather than patient diagnosis.
      This misconception is inaccurate and is an apparent conflation of clinical serologic testing recommendations for Lyme disease and the surveillance case definition of the Council of State and Territorial Epidemiologists (7) (http://wwwn.cdc.gov/nndss/conditions/lyme-disease/). Recommendations for 2-tiered testing are meant to aid the diagnosis of individual patients in the clinical setting. Serologic test results might be used by public health officials to determine whether a given illness meets the surveillance case definition, but the methods themselves were not developed for this purpose. Furthermore, for practical reasons, serologic results might be used slightly differently in surveillance than is recommended in the clinical setting. For example, although it is not recommended to perform Western immunoblot without a first-tier EIA for laboratory diagnosis, a positive IgG result by Western immunoblot alone is accepted as laboratory evidence of infection for surveillance purposes (http://wwwn.cdc.gov/nndss/conditions/lyme-disease/). This operational definition enables simplification of reporting practices because it can be difficult to track down records of the first-tier test. However, it does not represent best clinical practice.”
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4918152/

  6. Debra Fraleigh (member of Ontario Lyme Alliance)

    This article raises a large number of issues and demonstrates that the people quoted as experts are divided when advising physicians about how to proceed with a patient who could very well be infected with Lyme. Some of the advice given is quite contradictory. On one hand, Dr. Sider acknowledges that, “The longer you wait to be diagnosed, the longer the duration of disease, and the longer the recovery time.” Unfortunately, what he does not also tell readers is that the longer the disease remains untreated, the further it disseminates, the more debilitating it becomes as it invades more diverse tissues causing multi-systemic illness and the harder it becomes to treat.

    On the other hand, Dr. Gregson has said, “Often, if you don’t know what is causing a symptom like a fever, nothing is the right thing to do because it is likely a virus that will get better on its own.” I completely disagree with Dr. Gregson on this. What he has not explained, is that in a person for whom Lyme is plausible, that it is necessary to take a complete history of the patient’s signs, symptoms and exposure to tick habitat and do a proper assessment to determine whether Lyme is likely and not something that should be so quickly or easily dismissed. Each case is different and completely individual. Flu-like symptoms in someone who is active in the outdoors, or likes to walk in park lands, or who has travelled but doesn’t know whether the area they were visiting was littered with infected ticks, or who owns a pet that wanders off into brush areas, etc. might very well be infected. If those flu-like symptoms appear in the warmer months of the year, outside of flu-season, when an actual case of influenza is quite unlikely, then physicians need to weigh their options very carefully, because failing to recognize Lyme disease for what it is can potentially have life-long devastating consequences for their patient.

    Advice provided by the agency that performs the testing in most provinces in Canada, the National Microbiology Lab, in its Guide to Services – Detection of IgG/IgM Antibodies by ELISA website (1) states: “Initiation of antibiotic treatment prior to testing may result in decreased antibody production which will affect the outcome of serological testing. However, if Lyme disease is suspected based on clinical symptoms, treatment should be initiated.” I agree, treatment should be started right away because waiting to perform testing and then for results to be supportive of a diagnosis when testing has so many limitations to its reliability can truly cause patient harm.

    To elaborate on Donna Luger’s comment regarding testing limitations, according to the Health Canada Canadian Adverse Reaction Newsletter, Volume 22 – Issue 4 – October 2012 (2), “Serologic test results should be used to support a clinical diagnosis of Lyme disease and should not be the primary basis for making diagnostic or treatment decisions. Diagnosis should be based on patient history, which includes symptoms and exposure to the tick vector, and physical findings.”
    It needs to be clearly understood and emphasized that the species and the strain of Borrelia infecting a patient need to be a close enough genetic match to the Borrelia burgdorferi B31 strain in order to test positive with Ontario (and other provincial) two-tier testing. It is known that some species and strains that might infect a patient with Lyme disease here, or elsewhere in North America, will not reliably react to our testing.(3, 4, 5, 6) This is also why patients who may have been infected in Europe or Asia and who have positive or equivocal test results with the C6 peptide Elisa, should also be tested in Canada with the “European Lyme Serology” Western blot. Physicians should note that Public Health Ontario Laboratories will forward samples to the National Microbiology Laboratory for this test ONLY if the physician has also written “European Lyme Serology” on the requisition form AND supplied travel information for the patient.

    It is critical that physicians understand that a clinical diagnosis is not a diagnosis made simply on the basis of public health surveillance criteria for human case reporting. A patient may be diagnosed clinically and treated even if they do not fulfill the requirements for case definitions for epidemiology surveillance reporting.(7)

    Statement by Paul Mead M.D., M.P.H., on Hearing: CDC’s Lyme Disease Prevention and Control Activities before the Connecticut Department of Public Health and the Connecticut Attorney General’s Office. Jan 29, 2004.(7)

    “A clinical diagnosis is made for the purpose of treating an individual patient and should consider the many details associated with that patient’s illness. Surveillance case definitions are created for the purpose of standardization, not patient care; they exist so that health officials can reasonably compare the number and distribution of “cases” over space and time. Whereas physicians appropriately err on the side of over-diagnosis, thereby assuring they don’t miss a case, surveillance case definitions appropriately err on the side of specificity, thereby assuring that they do not inadvertently capture illnesses due to other conditions.”(7)

    “No surveillance case definition is 100% accurate. There will always be some patients with Lyme disease whose illness does not meet the national surveillance case definition. For this reason, CDC has stated repeatedly that the surveillance case definition is not a substitute for sound clinical judgment. Given other compelling evidence, a physician may choose to treat a patient for Lyme disease when their condition does not meet the case definition.”(7)

    The statistics and studies quoted in this article that claim a high degree of sensitivity and accuracy for Lyme testing in disseminated disease are quite misleading. Most notably, an analysis of the three studies cited in the CDC review, “Current Guidelines, Common Clinical Pitfalls, and Future Directions for Laboratory Diagnosis of Lyme Disease, United States” (8), which is included in this article, reveals that in the methods sections of all the cited studies (or the underlying studies those were based on) the patients with either disseminated or late-stage Lyme were required to either have been positive by means of culturing or needed to have positive serology to be included in the study. Since culturing is rarely, if ever done, it is likely that almost all of them would have been diagnosed based on positive serology testing.

    Starting with patients that at one time all had positive two-tier testing, and excluding patients that did not, would seem to be instructive of a way to create a statistic that should have actually been 100% instead of the 70 – 100% that was reported. Taking a figure from one study and including it to prove a completely different point in another review, does not constitute solid evidential science, particularly when that figure is the result of selection bias toward reactive samples. Including three such studies that demonstrate this type of circular reasoning only reinforces the point that statistics can be manipulated to fit a particular bias. A similar problem can be found in the article, “Laboratory Diagnostic Testing for Borrelia burgdorferi Infection” by Barbara J.B. Johnson, who tried to defray criticism of this circular thinking by attempting to justify it instead. This circular logic is unjustifiable and just wrong by any sound scientific standards.

    Unfortunately, a number of conclusions drawn from the available research evidence and touted to be ‘peer-reviewed evidence-based science’ are not necessarily supported by the actual findings of the studies themselves. Patients have good reason to question the quality of the evidence that continues to be espoused and relied upon. Patients and patient experts do not accept that the scientific questions have all been answered and can now be simply accepted as being absolute truths. All of us need to understand that science is rarely settled and acknowledge that science is always evolving.

    The entire issue of Lyme disease testing in alternative laboratories needs to be fully examined and could easily be a comment post on its own. Dr. Patel estimates that it would be years before genuinely improved tests become available. Until new diagnostic approaches to optimize the detection of Lyme disease are validated and accepted in Canada, physicians and their patients need to find interim options or solutions. Multiple strains and species of Borrelia are incorporated into standardized testing elsewhere. Along with alternate interpretation criteria (which have been locally validated for use) designed by laboratories in various localities, these changes have improved testing sensitivity in Scotland, China and several European countries. Everyone needs to have access to the most advanced testing currently available, as well as all of the information derived from testing results that can potentially support a clinical diagnosis. I, along with other members of the Ontario Lyme Alliance, would welcome a full and open discussion (and healthy debate) about interim options for testing.

    Patients believe that open and transparent debate and a full examination and proper evaluation of the science and the quality of evidence is essential to finding practicable solutions. Patients also want to make certain that all recent evidence-based scientific findings are included in the deliberations and given proper consideration.

    1. National Microbiology Guide to Services – Detection of IgG/IgM Antibodies by ELISA
    https://www.cnphi-rcrsp.ca/gts/faces/public/rdt.xhtml?lang=en&rdtId=4257&labId=1019

    2. Health Canada. Canadian Adverse Reaction Newsletter. v. 22 no. 4. October 2012.
    Available from: http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php

    3. Wormser GP, Liveris D, et al. Effect of Borrelia burgdorferi Genotype on the
    Sensitivity of C6 and 2-Tier Testing in North American Patients with Culture-Confirmed
    Lyme Disease. Clin Infect Dis. 2008; 47 (7): 910–914.
    Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2773679/

    4. Ivanova L, Christova I, Neves V, et al. Comprehensive Seroprofiling of Sixteen B.
    burgdorferi OspC: Implications for Lyme Disease Diagnostics Design. Clinical
    immunology. 2009;132(3):393-400.
    Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2752154/

    5. Goemes-Solecki MJC, et al. Epitope Length, Genospecies Dependency, and Serum
    Panel Effect in the IR6 Enzyme-Linked Immunosorbent Assay for Detection of
    Antibodies to Borrelia burgdorferi. Clin Vaccine Immunol. Jul 2007; 14 (7): 875–879.
    Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1951069/

    6. Wormser GP, Tang AT, Schimmoeller NT, Bittker S, Cooper D, Visintainer P,
    Aguero-Rosenfeld ME, Ogrinc K, Strle F, and Stanek G. Utility of serodiagnostics
    designed for use in the United States for detection of Lyme borreliosis acquired in
    Europe and vice versa. Medical Microbiology and Immunology. Feb 2014; 203 (1): 65-71.
    Available from: http://link.springer.com/article/10.1007/s00430-013-0315-0

    7. Mead P., Statement by Paul Mead M.D., M.P.H., on Hearing: CDC’s Lyme Disease Prevention and Control Activities before the Connecticut Department of Public Health and the Connecticut Attorney General’s Office. Jan 29, 2004.
    Available from: http://www.hhs.gov/asl/testify/t040129.html

    8. Moore A, Nelson C, Molins C, Mead P, Schriefer M. Current Guidelines, Common Clinical Pitfalls, and Future Directions for Laboratory Diagnosis of Lyme Disease, United States. Emerging Infectious Diseases. 2016;22(7):1169-1177. doi:10.3201/eid2207.151694. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4918152/

  7. Cody

    This isn’t a debate. The system is broken and letting many people down.

    The information Health Canada uses is inaccurate, they don’t seem to understand that the endemic areas easily spread through bird migration. I’ve seen taxidermists in non-endemic areas shaking animal carcasses clean of ticks which were shot and killed in endemic areas.

    It’s crazy what’s happening, my advice; put your money where your mouth is, allow ticks to bite you, get the bullseye and leave it untreated for a year… then, go try and get a positive test result thru the Elisa.

    If the thought of that scares you, which it damn well should, you know there’s likely a fault in the system.

    • Dawn

      Exactly. All you nay sayers… Let some ticks bite you. Wait a year or two… Then try to get a doctor, any doctor, to take you seriously. You’ll be rethinking your dismissive, there’s no problem, it’s all good replies then.

  8. Janet Laidlaw

    Media articles feature Canadians who have been treated outside Canada (not necessarily diagnosed by US labs, often by clinical diagnosis), not because Canadians don’t trust the standard process, but because the standard process in Canada doesn’t diagnose them or treat them effectively.

    The “experts” on Lyme risk are, in my opinion, those who acknowledge and effectively treat chronic Lyme. In Canada, that is rare. Focus on labs diverts from the main issue; chronic Lyme, or more specifically MSIDS (Multiple Systemic Infectious Disease Syndrome as described by Dr. Richard Horowitz – https://youtu.be/SXxWxMuUh8w ) Dr. Horowitz says MSIDS is a world wide epidemic.

    When people use the word Lyme they aren’t always meaning the same thing. Lyme to some means a specific strain Borrelia Burgdorferi, to others it means many strains, other forms of Borrelia and co-infections. According to the International Lyme and Associated Diseases Society (ILADS) there are 5 subspecies of Borrelia Burgdorferi, over 100 strains in the USA, and 300 strains worldwide. Our testing doesn’t measure each strain nor does it look for co-infections like Babesia or Bartonella.

    Delayed antibiotic treatment for Lyme (or MSIDS) can result in a lifetime of severe, debilitating ill health.
    If most Lyme sufferers had other conditions, there would be no debate about Lyme. The truth is many Lyme sufferers have lived for decades with no diagnosis.

    According to Dr. Richard Horowitz, the CDC surveillance case definition was developed for national reporting of Lyme disease and the CDC said that it was never intended to be used for a clinical diagnosis. He says that in a serology for early Lyme disease you will only get a positive blood test in 20 – 50% of cases and may remain negative if antibiotics have been administered early in the course. Dr. Robert Bransfield calls the 2 tiered Lyme testing a complete disaster. “If you look at the bottom, and this is on the CDC website, it says surveillance case definition is for disease reporting and should not be used as sole criteria for establishing clinical diagnoses”. ( https://youtu.be/7BbEBb-SzIE ) This is what the International Lyme and Associated Diseases Society says about our testing: “The elisa screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.” “Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial western blot sampling. Antibody titers also appear to decline over time; thus while the western blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For “epidemiological purposes” the CDC eliminated from the western blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia Burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia Burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.”
    ( http://www.ilads.org/lyme/about-lyme.php )

    Who would spend thousands on out of country testing if our so called “state of the art” testing was working? No-one.

    As your article suggests, the studies quoted regarding the erythema migrans rash do not reflect real world situations. Many diagnosed with chronic Lyme never have a rash.

    My niece has chronic Lyme disease. She did not have a rash. She got very sick when she was just 4 years old. She was labeled in Canada with untreatable “Childhood Disintegrative Disorder”. What continues to shock me is the complete lack of interest by her infectious disease doctors when she was treated by Lyme literate doctors and made dramatic improvements. Her case was extreme – it affected her brain – and her improvements were undeniable. She would have been profoundly disabled without the US treatment. Why on earth were our Canadian ID doctors not the least curious to find out what made her so dramatically better and why did they have no interest in speaking to those who successfully treated her?

    MSIDS Patients need individualized treatment and our system is not set up for this. There is no one “magic pill” treatment for Lyme.

    Long term antibiotic treatment is used for tuberculosis, HIV, hepatitis. Without the antibiotics my niece would likely be dead but most certainly profoundly disabled. Of course we wish for improved treatment, but the approach by our Canadian medical system – to just let her disintegrate – was unacceptable in comparison to the treatment from the US that gave her back her life.

    The last thing Canada needs is more complex chronic disease clinics like the one at BC Women’s hospital where they treat what they call “Lyme-Like” syndrome with Tai Chi, meditation, pain killers and psychiatric drugs. The CCDP is, in my opinion, an insulting waste of taxpayer dollars and shows a total disregard to those researchers who are already treating MSIDS/ chronic Lyme with success. Focus on Somatoform disorders is not going to help patients with a persistent infection.
    Definitely more needs to be done for Lyme patients, first by acknowledging chronic Lyme and co-infections, and learning from the Lyme literate doctors who are the real pioneers of treatment. That is not happening at the CCDP. We need to be more aware of new borrelia strains, co-infections, and how to administer individualized diagnoses and treatment. We need to be paying attention to the research of people like Dr. Alan MacDonald ( https://youtu.be/7ZnY871HZhM ) and listening to the stories of doctors turned patients ( Dr. Neil Spector – https://youtu.be/PTkT4QMG8Hc ).

    There are over 700 studies proving the persistence of Lyme. ( http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf ) Until chronic Lyme is acknowledged by Canadian Health authorities, none of the studies and programs are going to actually significantly improve the health of chronic Lyme patients.
    Many Lyme sufferers are called psychosomatic, or otherwise blamed for their symptoms. It is a hopeless feeling to have Lyme and know that your medical system will not help you. Many doctors do not want to be associated with Lyme. ( https://youtu.be/_wkC5yjsdm0 )

    One day, the denial of chronic Lyme will be seen as a shameful time in history. In the meantime, MSIDS (Lyme and company) is rapidly on the rise.

  9. Rob Murray

    Healthy Debate.ca, Reply: 16:07:13

    “Is Lyme disease under-diagnosed or overestimated?”

    From: Rob Murray -DDS (retired)
    Canadian Lyme Disease Foundation Board member (CanLyme.com)

    The focus should be on the Center for Disease Control’s own figures that point out we are missing 90% of the cases of Lyme disease in the U.S. and something similar might be expected here in Canada(1,2). Surveillance never catches all the cases since some are treated without testing and others are misdiagnosed. If we multiply the probable number of confirmed cases from across Canada in 2015 by 10 we come up with a much more realistic figure of 7,070 for year 2015. 20% are given the initial misdiagnosis of M.S.(3). In these kinds of complex political, medical, scientific situations it is wise to follow the money to see where powerful vested interests in maintaining the status quo are located and how they manage this disease by using disinformation. They keep our attention on the flawed serological tests rather than teaching doctors how to recognize the whole host of symptoms and presentations that this clinical disease can have depending on the stage of the disease and the species involved.

    Training doctors to be able to interpret test results and returning copies of these test results to the patient are a must. At the moment physicians, nurses and nurse practitioners don’t have sufficient training to have the confidence they need to diagnose and then treat these multi system complex diseases. Many physicians still think they must first have a positive confirmatory test whereas this is incorrect (4,5,6). The Lab and Infectious Disease people step in just where they shouldn’t be, between the patient and the treating physician and without knowing any of the history call all the shots. The discussion of whether to treat or not along with the advantages disadvantages and hazards should be left up to the patient and doctor to decide as a shared decision (7).

    The AMMI want a clear diagnosis before anyone is allowed to be treated and this process is used as a way to deny patient claims and benefits in the U.S. and treatment in Canada. We want a made in Canada solution since we are the ones funding the medical schools and system here along with the doctors salaries. So far we can’t even agree on the definition of Lyme disease. Infectious disease and the AMMI refer to LB as an infection of B. burgdorferi based on strain B-31 whereas we refer to it as a borreliosis caused by any number of pathogenic Borrelia species and strains. We do agree with a few things given in a November 2015 CME refresher course on Lyme disease put on at Dalhousie by Dr. Lynn Johnston. She says that:
    -Diagnosis is a clinical one
    -Serology is used to “support diagnosis” not used to make the diagnosis.
    -Clinical information is very helpful when interpreting and ordering tests (7)

  10. Rob Murray

    Perhaps what the N.S. College of Physicians and Surgeons said is part of the problem. Dr. Gus Grant said that he couldn’t possibly allow his doctors to diagnose Lyme disease with its 145 symptoms that seem to move around by the hour and mimic so many other serious diseases. What are front line health care providers supposed to be doing then? Are they merely rubber stamps pushing sick people out the back door. It perhaps isn’t as complicated as Dr. Grant implied because Lyme disease is the only one of these where the symptoms do appear to move around over days and weeks but not hours. His attitude takes us 180 degrees from where we have to go if we are to deal with the staggering numbers of cases. It helps to account for the under-reporting of the disease.

    Very sick patients don’t care about a textbook perfect description of Lyme disease which we prefer to refer to as a Borreliosis that can be caused by a variety of species and strains. For us it is Lyme borreliosis (LB) and other tick-borne diseases or co-infections.

    There is a reason why strict control is kept over lab records now. Physicians think the test results are binary when they are in reality open to interpretation. When they eventually learn how to interpret the results themselves they will become acutely aware of the significant limitations serological testing can have on a tissue borne infection of Borrelia Sp. Borrelia can dampen our immune system response and hide within our own cells (9). Borrelia hate our fluids and escape and change their shape and outer coat.

    Patients require a copy of their lab results signed by the doctor that states that false negative test results are possible and that if symptoms worsen they are to return to their health care provider for further testing or treatment.

    Equally important are the co-infections. Borrelia never travel alone and we are finding these are almost always mixed infections but taught as if it were a single one (8). Birds fly everywhere around the world dropping off their cargo of infected ticks. These diseases don’t respect borders yet the definition of LB is so totally restricted that it fails to account for the other known species of pathogenic Borrelia that we have here in North America. In Nova Scotia besides B. burgdorferi we have B. garinii,, B. sinica, B. valaisiana, B. Miyamotoi along with co-infections of Babesia, Bartonella, Anaplasma, along with 3 species of pathogenic Rickettsia (10).

    A lot of us read the information that comes from the IDSA and AMMI, evaluate the quality of the evidence and then vote with are feet and pocket books to cross the border to the south in order to get better. These are cases of LB not currently counted or tracked in Canada. There are whole families with Lyme that can’t afford to travel to find help. A lot of nonsense and hot air comes from the AMMI about false positive test results from private accredited U.S. Labs. My physician, who has been doing this for many years didn’t want to look at the lab results at all. He said it was first up to me to convince him that I had Lyme disease. That takes time and knowledge and at each subsequent appointment there was another questionnaire

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    diagnose and treat Babesia which are found in 32% of the cases as a co-infection (11). Babesia are a separate phylum and don’t respond to the normal antibiotics used for LB. The diagnosis is simpler than most because of the day/ night sweats, air-hunger and sore and itchy feet. Babesia make all symptoms of LB far worse. In June 2016 a Nova Scotia patient wasn’t convinced that her I.V. antibiotic therapy had worked requested a Babesia test. The infectious disease doctor refused because “we don’t have Babesia in Nova Scotia” even though it is listed in our 2016 Tick Borne Disease Response Plan (12) as having been found in small mammals and as a reportable disease. This is a disgrace and the doctor will not return calls. The patient is rapidly relapsing with no one to turn to. This is prescribed U.S. style factory medicine and is not acceptable in Canada.

    The answer to the question of whether or not Lyme disease in Canada is under or over diagnosed is that it is under reported and confused with other diseases (often psychiatric e.g. fibromyalgia) to take the pressure off infectious disease experts and the health care industry that would prefer that the truth not come out. If more about the prevalence and morbidity of the disease were understood then they would be expected to pour more resources into research, on vaccines and treatment. The problem that Lyme disease has is that it doesn’t kill enough people outright at a rate sufficient to bring about a public outcry. Shareholders of these large for-profit industries are not interested in vaccines because they take too long to come to market and if effective there is no long-term future demand. The antibiotics that work on these diseases are older and out of patent so there isn’t much business potential there. Insurance companies are happy with profits they can accumulate by having a disease like Lyme so strictly defined that few can ever cross the bar.

    What is interesting is the total number of lab tests requested for Lyme compared to the number of confirmed positive cases. Most patients walk away never obtaining a satisfactory explanation or diagnosis for their symptoms. The only rare thing about Lyme disease in Canada is a diagnosis. Why does Canada have the highest rate of M.S. in the world and yet the lowest rate of Lyme disease? The two can look identical on MRI brain scans and have many other similarities.

    Debra Fraleigh’s comment on Dr. Gregson’s point that “it is better to do nothing” is valid. A proper history taking would help in reducing these errors. Frequently those struck down with Lyme disease are previously some of the most active individuals in the community. When we see doctors coming up with diagnoses of chronic fatigue, depression, early alzheimer’s and fibromyalgia on previously active healthy teens and young people it stretches credulity to the breaking point. These are not patient centered practices.

    Physicians and infectious disease doctors in Canada don’t realize that the IDSA guidelines with their rigid protocols have been delisted from the National Guidelines Clearinghouse (NGC) in December of 2015(13). This is a federal database that provides treatment information to health care professionals and

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    insurance companies. This is good news for the Lyme community because it means the only approved guidelines are the ones from ILADS in 2014. This should have had an effect in how LB and associated diseases are taught and managed in Canada but it hasn’t. The IDSA guidelines are still to be found on the CDC website and the information of their removal is being ignored. We have been told it may take 2 – 5 years before new IDSA guidelines are approved when the IDSA and AMMI can once again claim ownership of these diseases and all the processes around them. Their approach is not tailored to the individual case but rather to the dictates of the private, for-profit health insurance companies and is unlikely to be tailored to the individual or needs of the patients. We can’t help our sick patients as long as the IDSA guidelines that are written in stone have been kicked out of Canada as they have had to do in Great Britain.

    Epidemiologic reports of Lyme disease in Canada like Dr. David Patrick’s and Dr. Morshed (14) only refer to numbers of B. burgdorferi bacteria found and use calming diminutive terms throughout like rare, mild, low etc. to make it seem like getting LB is rare and a remote possibility while the diagnosis and treatment are easy, short and predictably successful. The tick collecting was done from May until August; ticks are at their lowest numbers right across Canada in July and August. In fact the article uses the word low 10 times. So if you collect in the same areas that ticks don’t frequent in their off season (they are bimodal) you can use the word low quite frequently to describe various things in your paper . Why weren’t the other pathogenic Borrelia counted? There is a similar paper by Dr. Todd Hatchette and B. Lynn Johnston on LB in Nova Scotia from 2002 until 2013 that only counts cases involving B. burgdorferi (15). This would appear to help keep the number of Lyme disease cases in Canada down by playing down the risks and limiting the definition to just B. burgdorferi. Front line health care workers aren’t suspecting LB unless someone has stepped over one of those artificial lines on a map into a circle that shows where the ticks are endemic which further lowers the number of reported cases.

    Because Infectious Disease Doctors and Provincial Public Health officials have been able to so effectively control the messaging around these vector borne diseases they will remain as our most serious and most under-reported and under-diagnosed illnesses in Canada. They have effectively hidden a pandemic. They can ignore the input from other scientists and biologists and stick to their message. The IDSA for example have rejected all 700 peer reviewed scientific papers that show that viable Borrelia bacteria can survive brief rounds of antibiotic therapy (16). The numbers of sick just keep growing (prevalence) because those from previous years are not being treated and they are not getting better on their own.

    It will take a major push and injection of cash from government to turn things around. Much more research is needed. Industry just isn’t interested . They can make more money by having the disease continue to go under-reported and under- recognized. As long as the true number of cases in this pandemic remain hidden it

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    would be hard for public officials to justify spending large amounts of money on research.

    So what happened to the missing 90% and what are we going to do about the situation?

    References:

    1. CDC revised estimate of 300,000 new cases of Lyme disease a year available here:
    http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html
    2. Canada estimates 10,000 to 20,000 new cases a year (Dr. Greg Taylor)
    available here: http://www.nationalobserver.com/2016/05/16/news/lyme-disease-cases-rising-canada-climate-change-cited-probable-factor
    3. 20% initial misdiagnosis: https://www.lymedisease.org/lymepolicywonk- lyme-neurologic-misdiagnosis/
    4. Lyme and associated tick-borne diseases: Global challenges in the context of a public health threat. Christian Perronne, 03 June 2014 available here: http://journal.frontiersin.org/article/10.3389/fcimb.2014.00074/full
    5. Emergence of Lyme disease in Canada: epidemiology, prevention, disgnosis & treatment, Lynn Johnston, M.D., 28 Nov 2015, Course Notes, Fall Refresher, http://medicine.dal.ca/content/dam/dalhousie/pdf/faculty/medicine/departments/core-units/cpd/Fall_Refresher/1.%20Johnston_Lynn_Lyme_Refresher%202015%20for%20web.pdf
    6. Canadian Adverse Reaction Newsletter, Vol. 22 –Issue 4, Oct. 2012: http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php
    7. The Need for Clinical Judgement in the Diagnosis and Treatment of Lyme disease, Elizabeth L. Maloney, M.D. , J. American Physicians and Surgeons, Vol. 14, #3, Fall 2009 : available here: http://www.jpands.org/vol14no3/maloney.pdf
    8. Human Pathogens associated with the blacklegged ticks, a systematic review, Nelder et. al., 2016-05-05 http://www.ncbi.nlm.nih.gov/pubmed/27151067
    9. Review of evidence of immune evasion and persistent infection in Lyme disease. , Berndtson, K, 2013, Apr 23, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3636972/
    10. From unpublished data, Janet Sperling (R.M.)
    11. About Lyme disease co-infections, Lyme Disease.org, https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/
    12. Nova Scotia Tick Borne Diseases Response Plan 2016: http://novascotia.ca/dhw/cdpc/documents/100623_CDPC_Tick-Response-Plan.pdf
    13. https://www.lymedisease.org/idsa-guidelines-removed-ngc/

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    14. Surveillance for Borrelia burgdorferi in Ixodes ticks and Small Rodents in British Columbia, Morshed M and David Patrick, Nov. 2015 available here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4652138/
    15. Epidemiology of LB in N.S., Canada, 2002 – 2013 available here: http://wwwnc.cdc.gov/eid/article/21/10/14-1640_article
    16. Peer Reviewed Evidence of Persistence of Lyme disease Spirochete B. burgdorferi and Tick-Borne Diseases: http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf

    Robert Murray -DDS (retired)
    Board member, Canadian Lyme disease Foundation (CanLyme.com)

    Tel.: 902-634-8542
    Email: murrayr@eastlink.ca

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