Combatting Lyme disease myths and the “chronic Lyme industry”

Re: Combatting Lyme disease myths and the “chronic Lyme industry”

Those increasing number of concerned Canadians who have been bitten by a tick are right in seeking immediate help. Those lucky enough to get the much overemphasized rash, recall a tick bite, seek and receive prompt attention generally do quite well but there is only a brief window of opportunity for treatment before the planktonic Borrelia bacteria burrow into the tissue and this shape-shifting stealth pathogen deploys its many defensive strategies such as producing antibiotic tolerant cells, settling out in immune protected places like our brain, inside cells or form biofilm that is 1,000 times more resistant to antibiotic treatment. Biofilm or plaque is chronic/ persistent disease by definition. [1]

Lyme and tick-borne diseases are now the commonest vector-borne diseases we have in Canada. There is vast under-reporting and we are likely missing 90% of the cases. [2] Serologic testing is terrible and should be scrapped as this has what has gotten us into all this trouble. Delayed treatment for Lyme can lead to severe disease and fatal outcome. [3]

There is a refusal to recognize that untreated/ undertreated Lyme evolves into an entirely different multi-staged, multi-system, life-altering, life-threatening disease misclassified in 1994 as a minor nuisance disease when the insurance industry red-flagged it as being too expensive to treat. [4] It belongs in the same health risk category as Zika, Ebola, AIDS and West Nile. Lyme is the infectious disease equivalent of cancer. [5]

Members of the Association of Medical Microbiologists and Infectious Disease [AMMI] Canada overemphasize the risk of treatment and false-positives when in reality the worst thing you can do for a patient is give them a false-negative test result or diagnosis.

The Centers for Disease Control [CDC] in the United States has downplayed the severity of Lyme disease; essentially classifying this disease as a low and non-urgent health risk. Public health agencies worldwide are blindly following what has been deceitfully established.

Lyme is the 21st Century plague that became too expensive for insurance companies to treat with unacceptable testing, inadequate treatment, lack of medical training and absolutely no disease control; a public health disaster. The lack of accurate disease reporting leads to a reduction in public health awareness and medical education in areas where it’s needed. This then hinders a patient’s access to timely and accurate diagnosis and early treatment—which are absolutely critical to a good prognosis.

References:

1.) Metamorphoses of Lyme disease spirochetes: phenomenon of Borrelia persisters,
Rudenko N, et al. Parasite Vector [12] 237; 19-05-16: https://doi.org/10.1186/s13071-019-3495-7
https://parasitesandvectors.biomedcentral.com/track/pdf/10.1186/s13071-0...
2.) Under-Detection of Lyme Disease in Canada, Lloyd VK, Hawkins R, Healthcare 18-10-02, 6[4], 125; doi:10.3390/healthcare6040125 https://www.mdpi.com/2227-9032/6/4/125/htm
3.) Lyme carditis and atrioventricular block, Wan D, Baranchuk A, CMAJ 190 [20] E6222 18-06-22: DOI: https://doi.org/10.1503/cmaj.171452 https://www.cmaj.ca/content/190/20/E622
4.) Lyme symptoms list: https://canlyme.com/lyme-basics/symptoms/
5.) Lyme: The Infectious Disease Equivalent of Cancer, Says Top Duke Oncologist, Parish D, Huffington Post 17-12-06: https://www.huffpost.com/entry/lyme-the-infectious-disea_b_9243460

LymeNB reacts to CMAJ news article: Combatting Lyme disease myths and the ‘chronic Lyme industry’ by Wendy Glauser, Toronto. September 17, 2019

LymeNB was horrified to read the CMAJ news article published on September 17 that spoke about how the patient-facing toolkit being developed by the Centre for Effective Practice (CEP) in partnership with the Association of Medical Microbiology and Infectious Disease (AMMI) in Canada would serve to combat, as the title suggested, Lyme disease myths and the ‘chronic Lyme industry’. How disrespectful for the patient community!

This article seems to be more about bashing patients in general and, in particular, those suffering from late-stage Lyme disease rather than promoting better understanding of Lyme disease for improved management of early-stage disease (CEP presentation at Public Health Agency of Canada’s multidisciplinary roundtable in May 2019). Chronic Lyme is not a WHO ICD-11 disease classification and we prefer and promote the use of the term Disseminated Lyme Borreliosis (DLB) to refer to diagnoses of patients with long-standing untreated, undertreated, or undiagnosed Lyme infection. Disseminated Lyme Borreliosis and Early Lyme Borreliosis worlds apart in terms of diagnosis and treatment. They cannot be considered as one and the same. To our knowledge the CEP-led project does not address late-stage disease (Disseminated Lyme) but as stated above early-stage disease (Early Lyme).

We question the ethics of dismissing the horror stories of what you refer to as ‘chronic Lyme’ when such stories are the lived experience of real people, too many real people in fact. This is like equating late stage disease to fake news! How insulting for the patient! How harmful to Canadians and the effectiveness of our Canadian healthcare system if we are not properly addressing a very real and debilitating disease!

Not supported by science? Many reputable research studies and many quality medical practices outside of Canada provide irrefutable evidence of the existence of successful treatment approaches for Disseminated Lyme Borreliosis. Yet, these studies also show that delays in access to treatment and under treatment (i.e., following restrictive mainstream guidelines) will result in persistent symptoms for 5 to 30% of patients (https://www.hopkinsmedicine.org/news/newsroom/news-releases/study-shows-...).(1-6)

As to whether physicians are up-to-date on the range of Lyme disease and co-infections, we seriously question this. Physician surveys to which we have access do not support a high level of knowledge. Patients themselves have been confronted with this lack of awareness on the part of their own physicians.

Moreover, there is always a lag between what surveillance data shows and the on-the-ground reality. Risk maps are based on surveillance data and are therefore never fully up-to-date. Furthermore, to intimate that infected tick-bites cannot happen anywhere is misleading. Ticks travel wherever birds, pets and humans travel. It is scientifically incorrect to argue otherwise.

Patients are well aware of the limitations of the current two-tiered testing system. What they want is for physicians to listen to them, to acknowledge their symptoms and to be able to diagnose and treat them appropriately. Of course, patients want to be diagnosed and treated early; they are not ready to take any chances with their health. For this reason, they do not want to take a ‘wait and see’ approach which they know can have devastating results in some cases.

In summary, we understood from presentations we have heard about this project given by CEP representatives that the tool kits are designed to improve constructive and informed communications between patients and physicians. This article suggests that the tool kits are needed to course-correct the crazy thinking of persons out there who seem to have unfounded concerns about ticks, Lyme disease and their welfare and who are contributing to what the article refers to as the ‘chronic Lyme industry’, as though it was some form of a cottage industry. This article also suggests that the tool kits are designed to alleviate the burden felt by physicians of having to explain to patients the ecology and biology of ticks, the shortcomings of testing, and the likelihood of tick bites where they live. We feel that it is part of physicians’ role to promote and protect patient health by appropriately advising on Lyme-related prevention, testing, and treatment. However, our evidence shows that physicians continue to be equipped with the type of misinformation reflected in your article and consequently, great harm is being inflicted on many Canadians.

The messaging and tone of this article are not aligned with science and patient evidence and are at cross purposes with the intent of this project, which is to help, not denigrate.

Janet Higgins, Founding President, LymeNB

References

1. Berndston, Keith R. (2013) Review of evidence for immune evasion and persistent infection in Lyme disease. In International Journal of General Medicine. Retrieved from: https://www.ncbi.nlm.nih.gov › pmc › articles › PMC3636972

2. Bransfield, R. Peer-reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick Borne Diseases. Retrieved from: https://www.ilads.org › wp-content › uploads › 2018/07 › CLDList-ILADS

3. Delong, Allison, Mayla Hsu and Harriet Kotsoris (2019). In BMC Health. Retrieved from: https://doi.org/10.1186/s12889-019-6681-9

4. Johnson, Lorraine, Mira Shapiro and Jennifer Mankoff. (2018). Removing the Mask of Average Treatment Effects in Chronic Lyme disease Research Using Big Data and Subgroup Analysis. In Healthcare. Retrieved from: https://www.ncbi.nlm.nih.gov › pubmed

5. Philips, S., R. Bransfield et al. Evaluation of antibiotic Treatment in Patients with persistent symptoms of Lyme disease : An ILADS position paper. Retrieved from: citeseerx.ist.psu.edu › viewdoc › download

6. Rebman. Alsion W., Kathleen Bechtold et al. (2017). The Clinical, Symptom and Quality-of- Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. In Frontiers in Medicine. Retrieved from: https://www.ncbi.nlm.nih.gov › pubmed

Picture a two year old child running through the beautiful fields and forests of Connecticut. Then picture two weeks down the line the child presents with a febrile illness in the middle of July. The parents are informed by the pediatrician that the child has a "summer flu". The parents were not warned sufficiently by the Connecticut Department of Public Health back in 1994 to adhere to personal protection measures so no tick check was performed. The little child goes on to develop rashes that would come and go, crying spells that would last for hours, limping, inability to interact with peers. As the child grows up and starts complaining of headaches, neck pain, joint pain along with frequent infections etc. the mother is diagnosed with Lyme and tick-borne diseases. The mother is immediately aware that her child has been suffering along side her. Who would have thought and infectious tick-borne disease or disease? Both have Lyme disease, babesiosis and bartonellosis. This is what is happening everyday in the United States and Canada. It is not as simple as the author portrays. People are not simple minded enough that they want to make an industry of Lyme disease, they are sick, very sick. So are their children and their communities. I invite the author to come out in the field. The field of homes and neighborhoods in Connecticut. It would be a real eye opener. The physicians who do not want to acknowledge these diseases due to the fact of investigation by state boards and the fact that insurance companies do not want to pay for the costly visits or medication.
There are other diseases that come in to play, the co-infections. In a town near by we had a death from Powassun virus, the person was suffering for months the obituary alleges. What about Borrelia myamotoi? Less than 24 hours tick attachment and the larval ticks can transmit. Ticks so small they are almost microscopic. Not so simple these tick-borne diseases but if articles like this continue to disseminate it is with willful negligence. Downplaying ticks and the diseases they carry and the necessity to treat is causing suffering, morbidity and death.