immanence

Last updated on November 11, 2018

Immanence sometimes dips into areas of controversial or “boundary” science, which means areas of science whose interpretation is both publicly and scientifically contentious. While I don’t consider climate science to be all that scientifically controversial (though it is certainly politically controversial), and the general topics of “fake news,” “information war,” and the alternative media ecosystem (which are sometimes covered here) are not particularly scientifically contentious, topics such as “the Hum,” to take one example, fall into the area of anomalous phenomena — phenomena whose ontological status is considered unknown, mysterious, or problematic from a scientific perspective. (See note 1 below on the Hum.)

Public health has seen a number of such contentious issues arise, and in recent years the growth in cases of Lyme disease, and more so of “chronic Lyme,” has joined the ranks of other syndromes and conditions — from Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivity to Post-Traumatic Stress Disorder (or specific variants of it, such as Gulf War Syndrome), Recovered Memory Syndrome, Multiple Personality Disorder, and others — which have at various times teetered precipitously at, or over, the edges of what the scientific community considers “real.” There are connections between many of these phenomena and environmental change (on that, see Mary Beth Pfeiffer’s book), but those won’t be the primary focus of this post.

The following bibliography was begun as a link repository for me to make use of, if and when I might decide to do serious research on the topic. I’m posting it in the hopes that it can be a helpful resource for people who are interested in Lyme disease and its associated conditions, including “Chronic Lyme Disease,” Lyme disease co-infections, and the spectrum of conditions characterized by some as related to Lyme or “beyond Lyme” (as at least one popular source calls it).

My study of these has been far from exhaustive—it’s just an effort to make sense of a debate that has grown and shows no signs of abatement, an effort spurred by the growing proximity of the disease to my everyday life here in Vermont. Deer ticks are plentiful near our home—my son has brought them home from school and we’ve had to pay at least one hospital visit as a result. That visit, and earlier encounters, have been eye-opening insofar as they have introduced my family and I to the raging debate that the following sources document.

I take no side in the so-called “Lyme wars” except insofar as my intellectual commitments have made me aware of some important differences between scientific research and other forms of knowledge-production. In particular, the scientific establishment has two strengths that make it distinctive from any extra-scientific efforts to make sense of these phenomena. The first is that scientific research is carried out within a system of institutionalized peer review that is relatively transparent and broadly based across relevant disciplines. This makes it reliable in ways that other methods of knowledge-production are not. The second strength is that scientific research is generally well funded.

Ironically, the latter is also its weakness, insofar as much of the funding for scientific research depends on funders who, in a capitalist economy, may be more interested in business opportunities than in public health and welfare. Ideally, medical research is carried out at the behest of public needs, with a publicly responsive infrastructure for guiding, monitoring, managing, and implementing that research. But in the real world, especially in the United States (as compared to other wealthy, developed countries), that mandate has frequently been compromised, sometimes severely. (See Pamela Weintraub’s book, listed in Section III below, for a more detailed case against the medical establishment in relation to Lyme disease.)

There are other potential weaknesses, including a kind of “groupthink” that one finds anywhere. More importantly, the “unknowns” in the science of Lyme disease are large enough for there to be rival schools of thought, of which one may be better established than another, with no guarantees that the first will ultimately be proven more correct than the other. This means that confusion and contentiousness just might be part of the landscape for some time to come.

Aside from “pure science” (and, in the real world, science is never “pure”), it’s worth mentioning a few related but distinct forms of knowledge-production that are relevant to the context of Lyme disease.

• First, there are the clinical observations of medical practitioners; these have contributed significantly to a school of thought about Lyme that is very different from the mainstream scientific view (but they also contribute to the more accepted and mainstream position, as seen in the Pearson article in section I). While they have often been sidelined within the medical literature on Lyme disease, the recent publication of Fallon and Sotsky’s Conquering Lyme Disease (discussed in parts I and III below) may be changing that.
• Second, there is scholarly research in tangentially related areas, such as the sociology of science (or STS, science and technology studies), medical and health anthropology, cultural studies of science, and others, all of which follow similar standards of rigorous research except that they may be occurring in areas where there may not be enough researchers working on these specific topics (i.e., Lyme) to establish the kind of consensus that may be found in scientific medical research. The focus there is on something other than medicine itself — for instance, on the experience of patients, on cultural perceptions and understandings of medicine, and so on. These provide an important adjunct to understanding how society treats diseases in general and Lyme in particular.
• Third, there is in-depth investigative journalism carried out by science-literate professional journalists. In a few cases (such as Pamela Weintraub’s book, listed in section III), these have contributed significantly to the “alternative” view on Lyme.
• Finally, there is independent research, which often falls somewhere between the categories (especially of medical research, clinical observation, and journalism), and which is by its nature more difficult to judge because it lacks a clear context of institutionalized peer review. The best advice with the latter is “buyer beware,” but it is possible to identify patterns of acceptance or “resonance” across categories that make some of this literature more useful.

In the end, all that can be said conclusively is that the reality — or realities — of Lyme and its relatives are controversial, somewhat elusive, and marked by disagreements. The articles below provide a starting point for reading on these topics. The selection is not intended to be authoritative — it’s really pretty scattershot — and I welcome comments on things that are missing or over- or underemphasized. I will likely be updating it periodically and indicating any updates at the top of the post.

The following is divided into three sections:

• I. “Lay of the Land,” which lists brief articles providing useful introductory overviews to the Lyme disease “landscape”;
• II. “Medical Science Literature,” which is in turn divided into (a) research literature on Lyme disease sensu strictu, i.e. as defined by strict medical definitions, and (b) research literature on the broader landscape of Lyme, “chronic Lyme,” et al.; and
• III. “Other,” or “beyond Medical Science literature.” The latter covers all four of the knowledge-production categories listed above, which frequently overlap.

I. LAY OF THE LAND

I start with the fact that there are “Lyme wars” going on, in the sense that Lyme disease and things associated with it—particularly “chronic Lyme”—is a contentious and contested area drawing in the medical and scientific establishment, alternative health practitioners of various stripes, issues of public health, and specific communities within the broader public, with at least two distinct and active “sides” having formed over the years and little evidence of common ground between them.

The mainstream medical “consensus” on Lyme can easily be found on a variety of web sites: for instance, on that of the Centers for Disease Control (https://www.cdc.gov/lyme/index.html), NCBI’s PubMed (https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0025348/), the U.S. National Institute of Health’s Lyme Disease web page, Johns Hopkins University’s Lyme Disease Research Center (see, e.g., https://www.hopkinsarthritis.org/arthritis-info/lyme-disease/lyme-disease-treatment/), and the like. The articles below help to contextualize this consensus in relation to its critics, of which one group is particularly notable in the United States—a non-profit public advocacy group called the International Lyme and Associated Disease Society (ILADS; see https://en.wikipedia.org/wiki/International_Lyme_and_Associated_Diseases_Society and their own web site: http://www.ilads.org/). ILADS is in turn associated with other groups, including the alternative diagnostic tool developed by IgeneX, which is being used increasingly by some to test against Lyme and “associated” diseases.

The following articles provide the best overviews I have seen of this contested terrain, and are therefore good places to start.

The Lyme Wars, by Michael Specter, The New Yorker July 1, 2013 https://www.newyorker.com/magazine/2013/07/01/the-lyme-wars and its follow-up, A New Frontier in the Lyme Wars, The New Yorker January 15, 2015 https://www.newyorker.com/news/daily-comment/new-front-lyme-wars. These together may be the most informative single, brief introduction to the landscape of Lyme.

The science isn’t settled on chronic Lyme, by Maya Dusenbery and Julie Rehmeyer, Slate, June 27, 2018, https://slate.com/technology/2018/06/the-science-isnt-settled-on-chronic-lyme.html

Ticks rising, by Mary Beth Pfeiffer (excerpted from her book Lyme: The First Epidemic of Climate Change), https://aeon.co/essays/how-lyme-disease-became-the-first-epidemic-of-climate-change. Good overview of the environmental dimensions of Lyme.

How Celebrities are Changing the Way We See Chronic Lyme, by Stessa Edwards, Jezebel 3.29.2016. https://jezebel.com/how-celebrities-are-changing-the-way-we-see-chronic-lym-1764109037. Edwards’ bias is evident, but the article remains informative.

Tick Talk, a SUNY New Paltz student investigative journalism series, which includes some admirably good writing by students (such as Annie Courtens’ piece “No silver bullet”: https://sites.newpaltz.edu/ticktalk/ottaway-2014-lyme-disease-investigation/story-by-annemarie-courtens-2/)

Chronic Lyme disease, Wikipedia, https://en.wikipedia.org/wiki/Chronic_Lyme_disease.

Lyme Disease series, by Lisa Klimas, Mast Attack. This series of informative and critical blog posts from 2015 provides an overview of some of the problems of the field. It begins here and ends with its conclusions here.

The Challenge of ‘Chronic Lyme,’ by Rachael Pearson. New York Review of Books NYR Daily, https://www.nybooks.com/daily/2018/07/25/the-challenge-of-chronic-lyme/. I include this here not because it’s a detailed overview, but because it provides a reasoned perspective of someone involved in the debate who is well informed about the main challenge of “chronic Lyme”: that it doesn’t have a clear biological explanation. In its absence, there is a lot of poking about in the dark. Pearson’s conclusion is wise: “As it stands,” she writes, “allopathic medicine and biomedical research are ill­-equipped to develop effective therapies for conditions whose manifestations are as variegated and as particular to each patient as chronic Lyme, and which so far lack a clear biological aberration—an infection, a protein, an imbalance of electrolytes, a change in the structure of nerves—for our therapies to target. Such things fall into the category of suffering we cannot explain. The danger of proceeding with therapeutic attempts in the absence of a biological understanding of disease is illustrated precisely by chronic Lyme: unscrupulous providers seem to just be making stuff up, and the longer and riskier their treatments are, the more they profit. As things stand, listening—and frequent follow­-up with a good primary­-care physician—may be the best we can offer.” (Whether or not they are “making stuff up” is a whole ‘nother debate, but this at least is the perception from inside the world of scientific medical research and clinical practice.)

II. MEDICAL SCIENCE LITERATURE

II-A. RESEARCH ON LYME DISEASE SENSU STRICTU

As mentioned above, scientific medical research deserves to be the starting point on what is more or less known about a disease, its causes and effects, and its treatment options.  The following articles are useful in getting a handle on Lyme disease in its conventional form, that is, as a tick-borne bacterium that can result in a condition which affects people in more or less recognizable ways. The articles below document the scientific research on this form of Lyme disease and its treatment. I have sometimes provided abstracts or summaries either because these seem particularly useful or just because it’s been convenient for me to do that. Some of these articles may be available only behind pay-walls, but most should be available for free. They are listed in (more or less) reverse chronological order.

Lyme disease: A rigorous review of diagnostic criteria and treatment AT Borchers, CL Keen, AC Huntley, ME Gershwin Journal of Autoimmunity Vol 57, Feb 2015, Pages 82-115 https://www.sciencedirect.com/science/article/pii/S0896841114001334 https://doi.org/10.1016/j.jaut.2014.09.004

Lyme Disease (Clinical Practice) Eugene Shapiro, New England Journal of Medicine 2014; 370: 1724-1731. DOI: 10.1056/NEJMcp1314325 https://www-nejm-org.ezproxy.uvm.edu/doi/full/10.1056/NEJMcp1314325

Review: Unraveling Lyme Disease L K Bockenstedt, G P Wormser Arthritis & Theumatology 66.9 (2014): 2313-2323.

Diagnosis and Management of Lyme Disease. Wright, WF, DJ REidel, R Talwani, and BL Gilliam. American Family Physician (2012), http://my.ilstu.edu/~ddwilso2/nur475/Diagnostis%20and%20Management%20of%20Lyme%20Disease.pdf

Lyme borreliosis, Stanek, G, GP Wormser, J Gray, F Strle The Lancet Volume 379, Issue 9814, 4–10 February 2012, Pages 461-473. Abstract: Lyme borreliosis (Lyme disease) is caused by spirochaetes of the Borrelia burgdorferi sensu lato species complex, which are transmitted by ticks. The most common clinical manifestation is erythema migrans, which eventually resolves, even without antibiotic treatment. However, the infecting pathogen can spread to other tissues and organs, causing more severe manifestations that can involve a patient’s skin, nervous system, joints, or heart. The incidence of this disease is increasing in many countries. Laboratory evidence of infection, mainly serology, is essential for diagnosis, except in the case of typical erythema migrans. Diagnosed cases are usually treated with antibiotics for 2–4 weeks and most patients make an uneventful recovery. No convincing evidence exists to support the use of antibiotics for longer than 4 weeks, or for the persistence of spirochaetes in adequately treated patients. Prevention is mainly accomplished by protecting against tick bites. There is no vaccine available for human beings.

Lyme disease: the next decade Raphael B Stricker and Lorraine Johnson Infect Drug Resist 2011; 4: 1–9. doi:  10.2147/IDR.S15653 Interesting article that goes into the two “camps” around Lyme disease (IDSA and ILADS) and the controversy around “chronic Lyme” diagnosis. Abstract: Although Lyme disease remains a controversial illness, recent events have created an unprecedented opportunity to make progress against this serious tick-borne infection. Evidence presented during the legally mandated review of the restrictive Lyme guidelines of the Infectious Diseases Society of America (IDSA) has confirmed the potential for persistent infection with the Lyme spirochete, Borrelia burgdorferi, as well as the complicating role of tick-borne coinfections such as Babesia, Anaplasma, Ehrlichia, and Bartonella species associated with failure of short-course antibiotic therapy. Furthermore, renewed interest in the role of cell wall-deficient (CWD) forms in chronic bacterial infection and progress in understanding the molecular mechanisms of biofilms has focused attention on these processes in chronic Lyme disease. Recognition of the importance of CWD forms and biofilms in persistent B. burgdorferi infection should stimulate pharmaceutical research into new antimicrobial agents that target these mechanisms of chronic infection with the Lyme spirochete. Concurrent clinical implementation of proteomic screening offers a chance to correct significant deficiencies in Lyme testing. Advances in these areas have the potential to revolutionize the diagnosis and treatment of Lyme disease in the coming decade.

Antibiotic Treatment Duration and Long-Term Outcomes of Patients with Early Lyme Disease from a Lyme Disease–Hyperendemic Area Todd J. Kowalski Sujatha Tata Wendy Berth Michelle A. Mathiason William A. Agger Clinical Infectious Diseases, Volume 50, Issue 4, 15 February 2010, Pages 512–520, https://doi.org/10.1086/649920   Abstract Background. The length of antibiotic therapy and long-term outcomes in patients with early Lyme disease are incompletely described. We report the long-term clinical outcomes of patients with early localized and early disseminated Lyme disease based on the duration of antibiotic therapy prescribed. Methods. A retrospective cohort study and follow-up survey of patients diagnosed as having early localized and early disseminated Lyme disease from 1 January 2000 through 31 December 2004 was conducted in a Lyme disease–hyperendemic area. Results. Six hundred seven patients met the study inclusion criteria. Most patients (93%) were treated with doxycycline for treatment durations of ⩽10 days, 11–15 days, or ⩾16 days in 17%, 33%, and 47% of doxycycline-treated patients, respectively. Treatment failure criteria, defined before performing the study, were met in only 6 patients (1%). Although these 6 patients met a priori treatment failure criteria, 4 of these patients’ clinical details suggested reinfection, 1 was treated with an inappropriate antibiotic, and 1 developed facial palsy early in therapy. Reinfection developed in 4% of patients. The 2-year treatment failure–free survival rates of patients treated with antibiotics for ⩽10 days, 11–15 days, or ⩾16 days were 99.0%, 98.9%, and 99.2%, respectively. Patients treated with antibiotics for ⩾16 days had lower 36-item Short-Form Health Survey social functioning scores on the follow-up survey. No other differences were found in follow-up clinical status or 36-item Short-Form Health Survey scores by duration of antibiotic treatment. Conclusions. Patients treated for ⩽10 days with antibiotic therapy for early Lyme disease have long-term outcomes similar to those of patients treated with longer courses. Treatment failure after appropriately targeted short-course therapy, if it occurs, is exceedingly rare.

Lyme Disease: A Review   Current Allergy and Asthma Reports Jan 2010, Volume 10, Issue 1, pp 13–20 https://link.springer.com/article/10.1007/s11882-009-0077-3

Lyme Disease—Current State of Knowledge  R Nau, H-J Christen, & H Eiffert.Deutsches Arzteblatt International2009 Jan; 106(5): 72–82. Abstract: Background: Lyme disease is the most frequent tick-borne infectious disease in Europe. The discovery of the causative pathogen Borrelia burgdorferi in 1982 opened the way for the firm diagnosis of diseases in several clinical disciplines and for causal antibiotic therapy. At the same time, speculation regarding links between Borrelia infection and a variety of nonspecific symptoms and disorders resulted in overdiagnosis and overtreatment of suspected Lyme disease. Method: The authors conducted a selective review of the literature, including various national and international guidelines. Results: The spirochete Borrelia burgdorferi sensu lato is present in approximately 5% to 35% of sheep ticks (Ixodes ricinus) in Germany, depending on the region. In contrast to North America, different genospecies are found in Europe. The most frequent clinical manifestation of Borrelia infection is erythema migrans, followed by neuroborreliosis, arthritis, acrodermatitis chronica atrophicans, and lymphocytosis benigna cutis. Diagnosis is made on the basis of the clinical symptoms, and in stages II and III by detection of Borrelia-specific antibodies. In adults erythema migrans is treated with doxycycline, in children with amoxicillin. The standard treatment of neuroborreliosis is third-generation cephalosporins. Conclusions: After appropriate antibiotic therapy, the outcome is favorable. In approximately 95% of cases neuroborreliosis is cured without long-term sequelae. When chronic borreliosis is suspected, other potential causes of the clinical syndrome must be painstakingly excluded.

The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of American. G P Wormser, et al Clinical Infectious Diseases 2006:43 (1 November):1089-1134. This appears to be a fairly complete, for its time (2006), analysis by the Infectious Diseases Society of America.

II-B. MEDICAL SCIENCE LITERATURE ON “CHRONIC LYME” & ALTERNATIVE TREATMENT APPROACHES

Note that this list includes some examples of social science (not medical science), which I referred to in my introductory comments as a second form of research. These are also all listed in reverse chronological order.

Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease — United States N.S. Marzec, C. Nelson, et al. Morbidity and Mortality Weekly Report / June 16, 2017 / 66(23);607–609   https://www.cdc.gov/mmwr/volumes/66/wr/mm6623a3.htm

Unorthodox Alternative Therapies Marketed to Treat Lyme Disease Paul M. Lantos Eugene D. Shapiro Paul G. Auwaerter Phillip J. BakerJohn J. Halperin Edward McSweegan Gary P. Wormser. Clinical Infectious Diseases, Volume 60, Issue 12, 15 June 2015, Pages 1776–1782, https://doi.org/10.1093/cid/civ186   Abstract Background. Some patients with medically unexplained symptoms or alternative medical diagnoses suspect that they chronically suffer from the tick-borne infection Lyme disease. These patients are commonly targeted by providers of alternative therapies. This study was designed to identify and characterize the range of unorthodox alternative therapies advertised to patients with a diagnosis of Lyme disease. Methods. Internet searches using the Google search engine were performed to identify the websites of clinics and services that marketed nonantimicrobial therapies for Lyme disease. We subsequently used the PubMed search engine to identify any scientific studies evaluating such treatments for Lyme disease. Websites were included in our review so long as they advertised a commercial, nonantimicrobial product or service that specifically mentioned utility for Lyme disease. Websites with patient testimonials (such as discussion groups) were excluded unless the testimonial appeared as marketing on a commercial site. Results. More than 30 alternative treatments were identified, which fell into several broad categories: these included oxygen and reactive oxygen therapy; energy and radiation-based therapies; nutritional therapy; chelation and heavy metal therapy; and biological and pharmacological therapies ranging from certain medications without recognized therapeutic effects on Borrelia burgdorgeri to stem cell transplantation. Review of the medical literature did not substantiate efficacy or, in most cases, any rationale for the advertised treatments. Conclusions. Providers of alternative therapies commonly target patients who believe they have Lyme disease. The efficacy of these unconventional treatments for Lyme disease is not supported by scientific evidence, and in many cases they are potentially harmful.

Lyme Disease Diagnosed by Alternative Methods: A Phenotype Similar to That of Chronic Fatigue Syndrome  David M. Patrick Ruth R. Miller Jennifer L. Gardy Shoshana M. ParkerMuhammad G. Morshed Theodore S. Steiner Joel Singer Kam ShojaniaPatrick Tang  Complex Chronic Disease Study Group. Clinical Infectious Diseases, Volume 61, Issue 7, 1 October 2015, Pages 1084–1091, https://doi.org/10.1093/cid/civ470 Abstract Background A subset of patients reporting a diagnosis of Lyme disease can be described as having alternatively diagnosed chronic Lyme syndrome (ADCLS), in which diagnosis is based on laboratory results from a nonreference Lyme specialty laboratory using in-house criteria. Patients with ADCLS report symptoms similar to those reported by patients with chronic fatigue syndrome (CFS). Methods. We performed a case-control study comparing patients with ADCLS and CFS to each other and to both healthy controls and controls with systemic lupus erythematosus (SLE). Subjects completed a history, physical exam, screening laboratory tests, 7 functional scales, reference serology for Lyme disease using Centers for Disease Control and Prevention criteria, reference serology for other tick-associated pathogens, and cytokine expression studies. Results. The study enrolled 13 patients with ADCLS (12 of whom were diagnosed by 1 alternative US laboratory), 25 patients with CFS, 25 matched healthy controls, and 11 SLE controls. Baseline clinical data and functional scales indicate significant disability among ADCLS and CFS patients and many important differences between these groups and controls, but no significant differences between each other. No ADCLS patient was confirmed as having positive Lyme serology by reference laboratory testing, and there was no difference in distribution of positive serology for other tick-transmitted pathogens or cytokine expression across the groups. Conclusions. In British Columbia, a setting with low Lyme disease incidence, ADCLS patients have a similar phenotype to that of CFS patients. Disagreement between alternative and reference laboratory Lyme testing results in this setting is most likely explained by false-positive results from the alternative laboratory.

Chronic Lyme Disease Paul Lantos, Infectious Disease Clinics June 2015 vol 29, issue 2, pp 325-340 (follow-up to preceding article)

Lyme disease: Time for a new approach? L Borgermans, C Perronne, R Balicer, O Polasek, V Obsomer. British Medical Journal 2015; 351:h6520 https://www.bmj.com/content/351/bmj.h6520  While not a research publication, this brief article in a respected medical journal argues that a new approach to the topic is needed. “Recently,” the authors write, “the medical community has been collectively forced out of its comfort zone on Lyme disease by increasing evidence of the complexity of this multisystem disease.8 To further complicate matters, some patients develop long term symptoms. The complexities are essentially related to either a lack of understanding of the disease or conflicting evidence. Many questions await full answers…  Recent evidence shedding light on how spirochaetes of the Borrelia genus evade host immune defences and survive antibiotic challenge10 11 12 13 14 15 threaten current beliefs about the persistence of infection, one of the largest points of contention in the medical community. The possibility of persistent infection has important implications for diagnosis, treatment, and doctor-patient interactions.16 We need more national and international debates on Lyme disease, complemented by a solid research agenda and a focus on cutting edge biological technologies… Discussions should include national medical societies, doctors, patient advocacy groups, international health institutions, insurance companies, lawyers, governments, the private health medical sector, and scientific journals. It needs representatives of many different viewpoints who are prepared to remain open minded.”

A comparison of lyme disease serologic test results from 4 laboratories in patients with persistent symptoms after antibiotic treatment. Fallon BA, M Pavlicova, SW Coffino, C Brenner.  Clinical Infectious Diseases 2014 Dec 15;59(12):1705-10. doi: 10.1093/cid/ciu703. Epub 2014 Sep 2. This article has been used by critics to argue that IgeneX, the leading laboratory drawn on by ILADS supporters, has an overall poor record full of “false positives.” See for instance the discussion here.

Experiences of patients identifying with chronic Lyme disease in the healthcare system: a qualitative study Vitulano, L, R Lee, TR Weiss, and ER Colson, BMC Family Practice 2014 (15):79. https://bmcfampract.biomedcentral.com/articles/10.1186/1471-2296-15-79   

Common Misconceptions About Lyme Disease J J Halperin, P Baker, G P Wormser. American Journal of Medicine March 2013 v 126 no 3, pp 264.e1-264.e7. DOI: https://doi.org/10.1016/j.amjmed.2012.10.008   Abstract: Lyme disease, infection with Borrelia burgdorferi, is a focally endemic tick-transmitted zoonosis. During the 3 decades since the responsible spirochete was identified, a series of misconceptions and misunderstandings have become widely prevalent, leading to frequent misdiagnosis and inappropriate treatment. Persistent misconceptions concern the reliability of available diagnostic tools, the signs and symptoms of nervous system involvement, the appropriate choice and duration of antimicrobial therapy, the curability of the infection, and the cause of symptoms that may persist in some patients after treatment. Concern about disparate perspectives led the Institute of Medicine to review the subject. In this article we review the principal misconceptions, discussing their origins and the best currently available scientific evidence related to each one. Conclusion: Lyme disease has been the source of considerable controversy, with the debate spilling over into political and other arenas. It is regrettable that this has detracted from a reasoned approach to the scientific evidence. The latter has advanced sufficiently over the past 2 decades that diagnosis and treatment of this infection are now generally quite straightforward. Legitimate biologic questions remain to be studied, with answers that may well be relevant in the study of other disorders. However, the existence of these remaining biologic questions does not negate the fact that the approach to diagnosis and treatment is now well defined, and that there is no reasonable basis for the broad range of unconventional and potentially dangerous therapeutic approaches that continue to be recommended by some.

Antiscience and ethical concerns associated with advocacy of Lyme disease PG Auwaerter, The Lancet Volume 11, Issue 9, September 2011, Pages 713-719. Summary: Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.

Chronic Lyme disease: the controversies and the science Paul M Lantos   Expert Review of Anti-infective Therapy  Volume 9, 2011 – Issue 7 Abstract: The diagnosis of chronic Lyme disease has been embroiled in controversy for many years. This is exacerbated by the lack of a clinical or microbiologic definition, and the commonality of chronic symptoms in the general population. An accumulating body of evidence suggests that Lyme disease is the appropriate diagnosis for only a minority of patients in whom it is suspected. In prospective studies of Lyme disease, very few patients go on to have a chronic syndrome dominated by subjective complaints. There is no systematic evidence that Borrelia burgdorferi, the etiology of Lyme disease, can be identified in patients with chronic symptoms following treated Lyme disease. Multiple prospective trials have revealed that prolonged courses of antibiotics neither prevent nor alleviate such post-Lyme syndromes. Extended courses of intravenous antibiotics have resulted in severe adverse events, which in light of their lack of efficacy, make them contraindicated.

Psychiatric Comorbidity and Other Psychological Factors in Patients with “Chronic Lyme Disease” Afton L. Hassett, PsyD, Diane C. Radvanski, MS, Steven Buyske, PhD, Shantal V. Savage, BA, Leonard H. Sigal. The American Journal of Medicine September 2009 Vol 122, Issue 9, Pages 843–850 https://doi.org/10.1016/j.amjmed.2009.02.022

Implications of Gender in Chronic Lyme Disease, Wormser and Shapiro. Journal of Women’s Health 2009 Jun; 18(6): 831–834. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2913779/  Conclusions Patients with chronic Lyme disease differ with regard to gender from those with either B. burgdorferi infection or post-Lyme disease syndrome. This finding suggests that illnesses with a female preponderance, such as fibromyalgia, chronic fatigue syndrome, or depression, may be misdiagnosed as chronic Lyme disease.

A Critical Appraisal of “Chronic Lyme Disease” HM Feder, et al, The New England Journal of Medicine 2007; 357: 1422-30.  Conclusions: Chronic Lyme disease is the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections. Other examples that have now lost credibility are “chronic candida syndrome” and “chronic Epstein–Barr virus infection.” The assumption that chronic, subjective symptoms are caused by persistent infection with B. burgdorferi is not supported by carefully conducted laboratory studies or by controlled treatment trials. Chronic Lyme disease, which is equated with chronic B. burgdorferi infection, is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments for it is not warranted.

III. OTHER (or BEYOND MEDICAL SCIENCE LITERATURE) 

Unlike the medical research literature, which has obvious go-to places for basic information (see Section I above), there is no clear obvious starting point for the “alternative” or “complementary” approaches to Lyme and related diseases. (This has been called the “alt.Lyme” community. Weintraub describes it as “the topsy-turvy, ragtag, hardscrabble underground of Lyme.”) This is in part because these approaches lack a clear institutional structure or a publicly accountable infrastructure for supporting its research functions, credentialing its practitioners, sifting and reviewing what gets disseminated, and building on its research base. The sources listed here should therefore be considered more variable in their reliability. That is not to say that they do not include competent, caring, and passionate people with a clear interest in addressing public needs. It is just to say that one must exercise one’s own critical capacities when reading some of them (“buyer beware”).

That said, ILADS is attempting to be something like an official organizational spokesperson for the alternative view on Lyme disease. Among its claims is that the disease is much more widespread and is spreading much faster than the medical establishment makes out; that there are forms of it (such as “chronic Lyme disease”) that do not follow the regular pattern — which begins with a tick bite, follows on with a “bull’s eye” rash, and usually is treatable with antibiotics; that there are multiple modes of transmission of Lyme (including mother to fetus); and that it is altogether more mysterious than the establishment pretends. Lyme, according to this community, is the “Great Imitator,” a disease that mimics a range of conditions, from Chronic Fatigue Syndrome and Fibromyalgia to Alzheimer’s and all manner of autoimmune diseases. Those who treat this ambiguous array of conditions and syndromes with an (often broader) array of treatment methodologies often fashion themselves as “Lyme-literate MDs” (or LLMDs).

Some of the authors listed below, such as Buhner, Horowitz, and Klinghardt, present work that appears very conversant with scientific research, but I find them difficult to evaluate because their work is carried out outside the context of a recognizable peer-review system, and because I am frankly unqualified to judge its medical or scientific validity. (And I’m not sure who is, which is part of the difficulty.) This can be considered “maverick science” or “wild science,” in the sense of its being “untamed” by peer review protocols and an international, easily identifiable professional community that understands, support, and disseminates the research. Its status may be changing, however, so it will be interesting to see where things will go in the coming years.

I begin by listing a couple of books that provide excellent overviews of the Lyme landscape, but which are too long for Section I above. The first is written by two practicing medical scientists, the second by a science journalist; together they may make up the best in-depth, book-length treatments of the topic.

Conquering Lyme Disease: Science Bridges the Great Divide, by Brian A. Fallon and Jennifer Sotsky, Columbia University Press, 2017. This is, by my estimation, the single best attempt at an “objective” account of Lyme science and its multiple sides. The book skillfully and fairly attempts not only to reconcile the two sides of the “Lyme wars,” but also to show that current science both supports such a reconciliation and is contributing to it. As such, it is an optimistic contribution to the state of knowledge on Lyme disease and its relations. I recommend it as the best starting point for an understanding of the debates documented in the remainder of this article.

Cure Unknown: Inside the Lyme Epidemic, Pamela Weintraub (Rev. & updated, St. Martin’s/Griffin, 2013). Weintraub is a veteran science journalist, and this book provides a sharply written, passionate, and detailed account of the many complexities and controversies surrounding the identification and treatment of Lyme disease and its many variations. More than any other single book, reading this one has convinced me that the “medical establishment view” on Lyme disease has been either flawed or at least limited. The book’s original publication date was 2008 and its 2013 update was minimal (just an additional final chapter), so in some ways it is being overtaken by recent research (which is better documented in the Fallon & Sotsky book).

Lyme: The First Epidemic of Climate Change Mary Beth Pfeiffer. Island Press, 2018. An intriguing look at the connections between global climate change and the spread of Lyme.

A Grounded Theory Exploration of Knowing: Beginning with the Reality of the Lyme Body. Anna Frost. Ph.D. dissertation, Doctoral Program in Leadership Studies, School of Professional Studies, Gonzaga University, Spokane, WA, 2016. http://drannafrost.com/post/153480544630/a-grounded-theory-exploration-of-knowing  This doctoral dissertation presents an excellent ethnographic study of the experience of living with Lyme. One could argue that the author’s focus relies too much on patients’ claims of living with Lyme rather than with the clear diagnostic criteria preferred by the medical establishment, but it nonetheless contributes a very helpful perspective on the “lyme body” (a term that Frost argues should not be capitalized).

Healing Lyme: Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsiosis,Stephen Harrod Buhner (2nd Edition, Raven Press, 2015). Buhner is a leading name within the alt-Lyme community. An interview with him found here is a good introduction to his thinking and approach. His starting point and key message is that “everything that most people hear [about Lyme] is wrong.” If that is true, then the only place to learn what’s right is probably from his own books, which also include Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma (2013), Herbal Antibiotics: Natural Alternatives for Healing Drug-Resistant Bacteria (2nd ed., 2012), The Secret Teachings of Plants: The Intelligence of the Heart in the Direct Perception of Nature (2004), Sacred and Herbal Healing Beers: The Secrets of Ancient Fermentation (1998), and Plant Intelligence and the Imaginal Realm: Beyond the Doors of Perception into the Dreaming of Earth (2014). That said, the first few chapters are excellent (and perhaps mandatory) reading from the “alt-Lyme” perspective.

Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease, Richard Horowitz (St. Martin’s Press, 2013). https://www.amazon.com/Better-Solving-Mystery-Chronic-Disease/dp/1250019400  Horowitz is another leading figure in the alt-Lyme community. This interview is a useful place to start with him.

New Paradigms in Lyme Disease Treatment, Connie Strasheim (BioMed Publishing Group, 2016).  http://lymebook.com/new-paradigms-connie-strasheim-book/ A good overview of the approaches of Klinghardt (see below) and nine other “Lyme-literate” physicians.

Lyme disease: A Look Beyond Antibiotics, Dietrich K.Klinghardt, MD, PhD,  www.klinghardtacademy.com/images/stories/Lyme_Disease/Lyme_protocol_Jan06.pdf

Lyme Disease–Holistic Protocol to Completely Rebuild the Immune System, Michael Edwards,  http://www.organiclifestylemagazine.com/issue/15-lyme-disease-holistic-protocol-to-completely-rebuild-the-immune-system

Andrew Weil, who along with Dr. Oz seems to be everyone’s favorite complementary physician, recommends antibiotic treatment, but also says that if Lyme is not caught early enough, it may be worth looking into traditional Chinese medicine. He mentions a Chinese doctor in NYC, QingCai Zhang, who wrote a book on the topic several years ago, but which I haven’t seen reviewed in medical literature. See https://www.drweil.com/health-wellness/body-mind-spirit/insects-parasites/lyme-disease/

Views against the “alt-Lyme” perspective are also not too difficult to find; see, for instance, the skeptical science blog Science-Based Medicine’s case against “Chronic Lyme”: Does Everybody Have Chronic Lyme Disease? Does Anyone?

The popular press, meanwhile, includes occasional summaries of medical findings that may or may not be up-to-date and fair, but which are useful for getting a sense of the debates they generate in their comments (another form of “wild science culture”). E.g., the Washington Post article by Lena Sun (which characterizes the “alternatives” very negatively): https://www.washingtonpost.com/news/to-your-health/wp/2017/06/15/dangerous-unproven-treatments-for-chronic-lyme-disease-cause-are-on-the-rise/?utm_term=.f7c27b675e4f  On the other hand, philosopher Kwame Anthony Appiah’s “Ethicist” column responding to someone’s query about a Lyme disease “physician who may be a quack” (the letter-writer’s term, not Appiah’s) elicited an informative response by Richard Horowitz, but reading the comments on Horowitz’s Facebook page shows how easily Horowitz’s fans can turn against someone (Appiah, or the New York Times as an institution) who says almost nothing about the disease and doesn’t claim to.

CONCLUSIONS

The big question, for me (and others who, like myself, do not carry out medical research but who are interested in the social and cultural meanings, implications, and politics of medical research), is how the “Lyme wars” are playing out, what new alliances may be forming between the various constituencies — doctors, patients and advocacy groups, medical societies, insurance companies, governments, media outlets, and so on — and how people navigate between the different perspectives and approaches to these diseases, conditions, and syndromes. All these things remain in flux, as far as I can tell.

In other words, in answer to the question “What are your conclusions?” I can only say: None. Yet. Ask an expert. But I sure hope that the more hopeful voices of the broadly Lyme-literate research community (such as Columbia University’s Dr. Brian Fallon) are correct that we are moving toward a more balanced understanding of what Lyme is and how to live with it.

NOTES

1. On “the Hum”: I have come to believe that the humming sound that I hear, which I described in some detail in earlier posts on the topic, and which sounds very much like it comes from the environment, is a largely “otoacoustic” production — that is, that it is generated from within my own hearing, neural-brain, and/or body system in interaction with specific (and always quiet) environments. This may come as a disappointment to those who believe that the Hum is something global in scope, or connected to military installations or other secret technological systems. I make no claims that my hum is the same as yours, so I’m no longer willing to refer to mine as a manifestation of the “global Hum” (with a capital-H). At the same time, I have no doubt that industrially sourced hums in general have increased and multiplied over the last century or two, that that is a global phenomenon, that there are likely to be unusual acoustic phenomena derivable from them, and that these are likely to interact with any otoacoustic propensities that some (or all) of us might have. So if I were asked “do you believe in the global Hum?” I would vacillate between “Yes, sort of,” “It depends what you mean,” “Not if you mean that there is only one ‘global hum’,” and “I’m not sure.” Go back to top