By Jenna Luche-Thayer
There is compelling evidence that persistent Lyme infection can cause debilitating and disabling symptoms and even death. Despite this evidence, the Infectious Diseases Society of America (IDSA), Centers for Disease Control (CDC) and Prevention and National Institutes of Health (NIH) continue to support policies and practices that deny persistent infection.
Since the late 1990s, research terms have been introduced and disseminated that claim to represent one patient subgroup, be mechanistically neutral and explore possible reasons for persistent Lyme symptoms. These terms include Post Lyme Syndrome (PLS), Post Treatment Lyme Disease Syndrome (PTLDS), Post Treatment Lyme Disease (PTLD), and Post Lyme Disease Syndrome (PLDS) —referred to as ‘post Lyme’.
The objective of this literature review was to determine whether the broadly used and promoted ‘post Lyme’ terminology is neutral or biased regarding the cause of persistent Lyme symptoms. The findings are based on 103* peer-reviewed publications (PubMed.gov) from 1999 to 2020 that include the terminology PLS, PTLDS, PTLD and PLDS.
*There were 104 publications found by ‘key word searches’; one was excluded because its text could not be accessed.
NEUTRAL OR BIASED?
The post Lyme terms are described by the IDSA, CDC and NIH as symptoms that occur after ‘appropriate infection treatment’ —this infers that infection should be excluded as a cause of persistent Lyme symptoms.
These research terms have also morphed into clinical diagnoses, the most common being PTLDS and PLS. These clinical diagnoses are now commonly assigned to patients who suffer persistent symptoms following the IDSA recommended two-to-four week antibiotic treatment.
The CDC website does not refer to PTLDS as a research terminology. The CDC refers to PTLDS as a medical condition and states PTLDS is not treated with antimicrobials/antibiotics. CDC also links PTLDS to reference articles that use the term medically unexplained symptoms (MUS).
MUS is problematic and disputed. The American Psychiatric Association found MUS to be an overly broad and exploited term, e.g. MUS was being wrongly applied to cases of complex multisystem illness instead of seeking biological causes for illness. For these reasons, it was deleted from the Diagnostic and Statistical Manual of Mental Disorders (DSM–5).
The NIH website makes the following statements regarding PTLDS:
· “In patients who have non-specific symptoms after being treated for Lyme disease and who have no evidence of active infection (patients with PTLDS) studies have shown that more antibiotic therapy is not helpful and can be dangerous”
· …”results showed no benefit from prolonged antibiotic therapy when compared with placebo in treating those symptoms.”
· …”study authors concluded that additional antibiotic therapy for PTLDS was not supported by the evidence.”
· “A [PTLDS] positive response to prolonged antibiotic therapy may be due to the placebo effect.”
Both the CDC and NIH appear to promote a ‘no infection present, no antimicrobial/antibiotic treatment agenda’ for PTLDS and other post Lyme terms.
The CDC, NIH and IDSA also define these post Lyme terms as having ‘subjective symptoms’. Objective symptoms are those that can be proven scientifically, e.g. a fever, and may be due to infectious causes. In contrast, subjective symptoms are based on what ‘the patient thinks/believes they suffer’ and lends itself to the diagnoses of somatic/psychological/psychiatric disorders and causes.
Persons suffering any chronic illness, including persistent Lyme infection, may develop secondary psychosomatic and psychiatric disorders. However, a post Lyme diagnosis in clinical settings often results in treatments limited to the secondary psychosomatic and psychiatric disorders and denial of adequate antimicrobials for the underlying infection.
Post Lyme symptoms are described as “pain, fatigue, or difficulty thinking that lasts for more than 6 months after they finish treatment.” This list largely ignores well documented complications —including cardiac, central nervous system, organ, eye, endocrine and immune system— that arise from under-treated infection and can resolve or improve if treated.
There are also prominent Lyme researchers who promote the neutrality of these post Lyme terms. In many public statements and articles, the former Chair of the Federal Tick Borne Diseases Working Group says, “Notably, PTLD is a mechanistically neutral research definition and the term “post-treatment” refers to the patient’s status of having been previously treated with appropriate antibiotics.”
This statement obviously infers the infection has been adequately treated; indicating PTLD does not include infection causation of symptoms and is therefore not mechanistically neutral.
The review of the post Lyme literature showed:
· 70 of the 103 publications note post Lyme symptoms exclude infection causes and/or the need for infection treatment. One assesses antibiotic Lyme treatment trials, makes no recommendation for additional antibiotic Lyme treatment and indicates intravenous antibiotics should not be pursued.
· 20 of 103 publications indicate infection is a possible cause of persistent symptoms (one that includes a review of standard serology tests is in this group).
· Only 13 of 103 publications focus on antimicrobial/antibiotic treatment for infection causing persistent ‘post Lyme’ symptoms.
· There are very few researchers investigating treatments to address persistent Lyme infection.
· Only 3 of 103 publications broaden the persistent symptoms to include severe complications, e.g. cardiac and neurological.
· Among the 70 that exclude infection, there is a focus on psychological/psychiatric disorders and/or post infectious autoimmunity and/or neuroborreliosis that excludes post Lyme.
· US government funders of post Lyme studies largely ignore infectious causes of persistent symptoms. These funders include: National Institutes of Health, National Institute of Allergy and Infectious Diseases, National Institute on Drug Abuse, National Institute of Neurological Disorders and Stroke, National Institute of Mental Health, National Center for Research Resources and Department of Energy.
· The numbers of post Lyme publications began to increase rapidly in 2013 and gained more government funding. Prior to 2013, there were only 17 publications; whereas 86 articles were published on PubMed.gov between 2013 and August 13, 2020. Of these 86 publications, 59 excluded infection.
Of note: Seven of the 13 articles focused on infection causality were authored by Professor Ying Zhang of Johns Hopkins Bloomberg School of Public Health. In contrast, 15 of the 70 publications that excluded infection were authored by researcher John Aucott of John Hopkins Lyme Disease Research Center.
Of note: Nine of the post Lyme studies that ignore infectious causes of persistent symptoms were funded by Lyme nonprofits that advocate on behalf of patients.
It appears the US government has actively denied persistent Lyme infection for decades while spending millions of tax dollars studying this stealth pathogen that can evade the immune system and resist antimicrobials (research funding readily available on https://grantome.com/).
What could be driving this contradictory behavior?
A 1998 Congressional Record on Amendment No. 3020 Sec.708 provides some clues.
The Congressional Record states ”long term treatment expenses can exceed $100,000 per person [approximately $158,950 in 2020] —a phenomenal cost to society”. It was then recommended to expand DOD’s research into preventing and treating Lyme Disease and other tick-borne illnesses as these infections are recognized as a threat to our military readiness. (See records below.)
Cost containment and liability may be a forceful reason behind the government downplay of persistent infection that requires ongoing care. There are many hundreds of thousands of military personnel and other government employees who are at risk for Lyme infection as a result of their employment requirements.
These government employees include all military/United States Department of Defense, Department of Homeland Security, Department of Energy, Department of the Interior, Department of State, Department of Transportation, Department of Health and Human Services/CDC/NIH, Department of Agriculture, Indian Health Service, Appalachian Regional Commission, Delaware River Basin Commission, United States Environmental Protection Agency, Animal and Plant Health Inspection Service, Agricultural Research Service, Foreign Agricultural Service, Forest Service, Farm Service Agency, National Institute of Food and Agriculture, Natural Resources Conservation Service, Rural Utilities Service, Bureau of Indian Affairs, Bureau of Land Management, Bureau of Safety and Environmental Enforcement, Fish and Wildlife Service, National Park Service, Office of Surface Mining Reclamation and Enforcement, Bureau of Reclamation, and United States Geological Survey.
This may explain why government funds flow towards those post Lyme studies that focus on psychosomatic/psychiatric disorders and can be contained within inexpensive palliative care models. The powerful insurance industry also show quarterly profits when persons suffering from persistent infection are shunted into palliative care.
It is obvious that post Lyme terms are not neutral and that they have a strong ‘anti-infection causality bias’. The IDSA, CDC, NIH and other government entities actively promote a ‘no infection present, no antimicrobial/antibiotic treatment agenda’ through post Lyme research terms and clinical diagnoses.
The clear majority of post Lyme publications:
· have not advanced treatments for a persistent infection that debilitates, disables and kills
· encourages symptom management or palliative care, as opposed to infection treatment
· promotes treatment limited to psychological/psychiatric disorders
Post Lyme research has not served the patient community well and should be abandoned by all those committed to the welfare of this vulnerable, marginalized and rapidly increasing patient population.
© Copyright 2020. Global Network on Institutional Discrimination, Inc. All rights reserved.
Jenna Luché-Thayer. 35+ years working globally on the rights of the marginalized. Former Senior Advisor to the United Nations and the US Government. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination, Inc. —Holding institutions accountable for political and scientific solutions.
And this, right here, is why the Lyme community is similar to Alice in Wonderland –complete with the Queen of Hearts, the Mad Hatter, the Cheshire Cat, and the March Hare.
We find ourselves in an alternate reality with people who are quite content to keep us there and will lie, cheat, and steal to make it happen.
And, similarly to Alice, all the Lyme community has to do to get out of Wonderland is to WAKE UP and stand up to the figures in authority.