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Revising the Lyme Landscape

Ralph Burrillo* *University of Utah Department of Anthropology, ralph.burrillo@anthro.utah.edu

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Abstract

Lyme disease is a worldwide phenomenon and is the most prevalent

vector-borne illness in the United States. Numerous authors contend that Lyme

disease and its associated co-infections occur only in discrete, well-defined areas,

and many health care providers use this as their primary basis of consideration

for or against testing and diagnosis. However, rates of infection in areas

considered to be non-endemic are increasing.Possible reasons for this increase

include lack of consistent testing and reporting methods, unknown and emerging

etiological pathogen strains, ecological changes and/or lack of data regarding

ecological factors, and obstinacy on the part of principal researchers. As the

numbers of both Lyme-generative genospecies and positive human infections

continue to increase throughout the US, it is of considerable value for health care

providers to revise or abandon the prevailing practice of using geography to rule

out possible Lyme infection.

I. Background

Lyme disease is a controversial issue (e.g., Stricker 2007; Stricker and

Johnson 2011). This study is restricted exclusively to the issue of geography

because one of the biggest reasons for delayed diagnosis, delayed treatment,

and subsequent development of disseminated, late-stage, and/or the hotly

contested “chronic” Lyme disease is the widespread and erroneous belief that it

only exists in certain well-defined areas (e.g., Bhate and Schwartz 2011; CDC

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2011c). Addressing and redefining the “Lyme landscape” is at the heart of

ensuring timely and effective testing, treatment and resolution of this condition.

Lyme disease is a complex, multi-systemic disorder that affects tens of

thousands of people each year in the United States and abroad. It is the most

common vector-borne illness in the US (Hildenbrand 2009: 1079), with some

30,000 cases occuring in 2010 (CDC 2010; Bhate and Schwartz 2011: 620). The

most commonly cited vector for transmission is the deer tick (Burgdorfer et al.

1982; Rudenko et al. 2009; CDC 2011c), although the list of potential vectors is

increasing (see Section V). It can lie dormant or attack at once, it is notoriously

difficult to diagnose, and it presents itself in at least three stages: early-acute,

early-disseminated, and late-disseminated, with some researchers also adding a

fourth, “chronic/persistent” stage (Burrascano 2008: 19-21; but see also Feder et

al. 2007).

Lyme disease takes its common name from the area in Connecticut where

it was studied in the mid-1970s by Allen Steere, David Snydman and others, who

originally dubbed it “Lyme arthritis” after the name of a nearby town (Steere et al.

1977). In fact, the physical history of the disease goes somewhat deeper than

that: Ötzi, the famed 5,000 year-old Austrian ice mummy, evidently had it (Hall

2011). In 1982 W. Burgdorfer and others published an article in Science

demonstrating that the disease was caused by a spirochete bacterium,

subsequently named Borrelia burgdorferi in his honor, which was transmitted to

humans by ticks. Since that time, and especially within the past decade, the topic

of Lyme disease has precipitated the creation of at least two opposing camps,

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pitted against each other in almost every regard. On one side is the Infectious

Disease Society of America (IDSA), which contends that Lyme disease is rare,

easy to treat and almost totally restricted to certain discrete regions of the world

(IDSA 2011). On the other side is the International Lyme and Associated

Diseases Society (ILADS), which contends that Lyme is not rare and can be

found in virtually any part of the world, along with a widening cohort of

complicating co-infections (Stricker and Johnson 2011: 1). Protests, lawsuits,

threats of personal violence and other medically unconventional acts have

followed since this rift appeared, leading to its being dubbed the “Lyme War”

(Stricker and Johnson 2010).

Conflict between the two camps came to a head in 2008, when the

Connecticut Attorney General instigated a historic antitrust investigation into the

development of Lyme disease treatment guidelines by IDSA. The investigation

found significant irregularities and a number of conflicts of interest, including key

panel members having financial interests related to Lyme and its

pharmacological profile, overreliance on weak “expert opinion” evidence, lack of

peer review before publication, and failure to include divergent viewpoints or

alternative treatment approaches (Stricker and Johnson 2010; Under Our Skin

2009). Ultimately, IDSA was ordered to create a committee – comprised of its

own members – to review the guidelines.

Vanishingly scant consensus exists on such topics as Lyme’s microbial

profile (e.g., Owen 2006; Fallon 2004; Rudenko et al. 2011; Bhate and Schwartz

2011: 622), courses of treatment and their efficacy (e.g., IDSA 2011; ILADS 2004;

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and Burrascano 2008), co-infections (covered in the next section), and, most

contentious of all, the real or fictional status of “chronic” Lyme disease (e.g.,

Under Our Skin 2009; Lange 2004: 184-190; ILADS 2004: S6; Feder et al. 2007;

Phillips et al. 2005: 1439-1440). The purpose of this study is not to document the

controversiality of Lyme, but to address the simple and ingratiatingly persistent

notion that Lyme simply does not exist in areas where it very likely does.

II: Current Distribution of Lyme Disease

Given that Lyme disease is usually – if not exclusively – transmitted by

certain species of ticks, namely the Ixodes genus (Burgdorfer et al. 1982), a

reasonable starting point for exploring its regional footprint is by identifying the

areas in which these ticks are indigenous. In the eastern US, the predominant

vector for Lyme is the blacklegged or “deer” tick, Ixodes scapularis, whose

habitat includes the east coast, Great Lakes region, and parts of the Midwest

extending into Texas (see Figure 2).

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Figure 2: Blacklegged Tick Habitat, CDC

In the western US, the predominant vector for Lyme is the western blacklegged

tick, Ixodes pacificus, whose habitat includes the west coast, parts of southern

Nevada and central Oregon, a small portion of northeastern Arizona and a swath

of Utah (see Figure 3).

Figure 3: Western Blacklegged Tick Habitat, CDC

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In addition to the species I. scapularis in the east and I. pacificus in the

west, the possible carrier list now includes the non-Ixodes Lone Star tick,

Amblyomma americanum (see Figure 4), and the American dog tick,

Dermacentor variabilis (Lange 2004: 11-12; range not pictured).

Figure 4: Lone Star Tick Habitat, CDC

Additionally, studies conducted in Poland (Kosik-Bogacka et al. 2007) and

the Czech Republic (Žákovská et al. 2006) demonstrated the presence of

Borrelia burgdorferi in at least a couple different groups of mosquitos, namely

species from the Culex and Aedes genera.

Taken together, these maps (Figures 1-4) demonstrate the areas most

likely to include those species of tick that are known to harbor and spread the

Lyme Borrelia spirochete. The resulting picture is best summarized in the map

presented as Figure 5, prepared and posted on the Department of Labor’s

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Occupational Safety and Health Administration (OSHA) webpage on “Potential

for Occupational Exposure to Lyme Disease.”

Figure 5: Lyme Disease Risk Distribution, OSHA

While these maps indicate the prevailing distribution of risk, Lyme has

been reported throughout the United States and in many places across the world,

and its overall distribution has been rapidly increasing since it was first described

by science in the early 1980s (Fallon and Nields 1994: 1571-72). This is reflected

in the Lyme Disease Association’s map of Lyme cases reported from 1991-2008

(Figure 6), generated by CDC data, which includes the following addendum:

Note: according to CDC only 10% of Lyme disease cases that meet case definition are reported, meaning if 10,000 cases are reported, 100,000 cases have occurred. This data does not include all the cases that fall outside the stringent surveillance case definition.

Thus, rates of Lyme disease do indeed seem to cluster around a select group of

discrete areas, but only in terms of proportion. According to the data presented in

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Figure 6, there is not a single state in the nation that had no cases of reported

Lyme infection in the time 1991-2008.

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Figure 6: Data Courtesy of CDC, Lyme Disease Association

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III: Current Distribution of Common Lyme Co-infections

In addition to Lyme itself, there is also the issue of its nefarious co-

infections. It is beyond dispute that the ticks that carry Lyme disease also carry

numerous other microbes, some of which are no longer considered

“controversial” co-infections: babesiosis, ehrlichiosis and anaplasmosis

(Weintraub 2008: 168-169; Burrascano 2008: 4-5; Stricker and Johnson 2011: 1).

Curiously, it has been noted that anaplasmosis by itself can create a false

positive response for Lyme in serological testing (Steere et al. 2003: 1278).

Bartonella, although not as widely accepted as a primary Lyme co-infection, has

been found in over 20% of the Ixodes ticks known to carry Lyme disease in

California (Weintraub 2008: 172), and some researchers think Bartonella might

be at least partly responsible for many of the particularly neuropsychiatric Lyme

cases (ibid.; Burrascano 2008: 22-27). Other possible co-infection culprits include

Tuleremia and Mycoplasma (Weintraub 2008: 173). In fact, one study reported

that 100% of a sample set of 27 Lyme-infected patients also tested positive for

persistent Mycoplasma fermentans (Owen 2006: 861).

Babesiosis appears to be the most common co-infection in the US (about

28%) with ehrlichiosis (about 26%) coming in second (Bhate and Schwartz 2011:

629; see also Zerbe 2011). And babesiosis is on the rise. So far the increased

incidences of babesiosis seem to be restricted to the northeastern US, where

some areas saw “a 20-fold increase” from 2001 to 2008 (Tarkan 2011).

According to Dr. Peter Krause, a senior research scientist at the Yale School of

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Public Health, there are an estimated 1,000 cases per year “in states that track

the disease,” although he and other experts contend that the actual figure is

much higher (ibid.). Again, that is in states that track the disease; it is crucial to

note that babesiosis wasn’t officially declared a nationally notifiable disease by

the CDC until January 2011 (CDC 2011b), so nation-wide monitoring of babesia

and its associated illness has only just begun. As of this writing the CDC does

not yet have enough data to create a national map of babesiosis incidence rates.

These and other, as-yet undiscovered co-infections all seem to share at

least two things in common: their rates of incidence and their regional footprints,

both of which are expanding in tandem with those of Lyme itself. The first could

be the result of a nationwide increase of awareness over the past decade (Bhate

and Schwartz 2011: 621), which would not indicate an increase in rates of

infection so much as an increase in rates of awareness of infection – although

applying that line of thinking to the phenomena of increasing regional footprints

isn’t so easy. However, regardless of whether it is the number of cases or just the

number of diagnoses that is intensifying, the impact on the Lyme landscape is

the same: the it doesn’t exist here dogma is of waning significance throughout

the US.

IV: Dog Data Discrepancies

According to Bruno Chomel of UC Davis (cited in Weintraub 2008: 172-

173), “Dogs are excellent sentinels for human infections;” they often show up in

canines before being diagnosed in people. This is likely due to the co-evolution of

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dogs and humans as close companions over the last 16,000 years (Schleidt and

Shalter 2003), during which time our diets, social and individual behavioral traits,

and very likely our immune systems became more and more similar. It is

therefore not unreasonable to assume considerable overlap between human and

canine infection trends (Henn et al. 2007).

Of the maps of Lyme disease infection rates among dogs that are

available online, Figure 7, provided by Companion Animal Parasite Council

(CAPC) using data collected by IDEXX Reference Laboratories, proved to be the

most relevant to this study: it does not include the figures for 2010 and is

therefore an adequate map for comparison with the Lyme Disease Association’s

2009 CDC map (Figure 6). It is also pertinent to note that the CDC map

represents total cases over an 18-year period, while the CAPC map represents

just the years 2007-2009; one would expect, therefore, that the CDC map would

represent far more cases of infection. Interestingly, this is not the case, although

probably for a simple reason: American dogs spend a lot more time outside than

do American humans.

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Figure 7: Canine Lyme Disease Case Distribution by State, CAPC

When the CDC and CAPC map data are overlapped, the distribution

trends line up with considerable accuracy (see Figure 8). Thus the CAPC map is

at least a reasonable predictive model for infection in humans.

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Figure 8: Comparison of CAPC and CDC Lyme Distribution by State, States were excluded where CAPC and CDC both agree that Lyme is endemic and their high numbers would make the chart unnecessarily cumbersome.

When dealing with discrepancies between data relating to population

statistics, the raw numbers aren’t as important as the proportions. For example, a

difference of 2,000 cases in a state with 20 million people is of much less

significance than a difference of 2,000 cases in a state with 200,000 people – in

both cases the difference in numbers is the same, but the second represents a

far greater difference of percentage. In comparing the CDC and CAPC maps on

the comparison table above, the biggest discrepancies appear to be between the

data sets reported for California and Illinois. On closer inspection, however, the

proportional difference between the CDC and CAPC data for California and

Illinois represent increases of about 200%, from 2370 to 6249 in California and

from 1003 to 3005 in Illinois. In other words: in both cases,the CDC figure is

about one-third the CAPC figure, a noteworthy gap if not a shocking one.

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While the datasets from California and Illinois may represent significant

discrepancies, they are nothing compared to the proportional difference between

the CDC and CAPC data for the state of Colorado: from 9 to 998 cases,

respectively, or a difference of about 11,000%. This implies one of two scenarios:

either infected ticks in Colorado restrict their feeding habits exclusively to wild

animals and dogs, or something is amiss in the data on either the CDC or CAPC

side of the discrepancy.

Hinting toward a possible cause for this discrepancy is the following

statement on the CDC’s Case Definitions for Infectious Conditions under Public

Health Surveillance webpage (CDC 2011a): “In the United States, requirements

for reporting diseases are mandated by state or local laws or regulations, and the

list of reportable diseases in each state differs.” By contrast, the following

statement appears on the bottom of the tick-borne disease distribution map

provided by IDEXX Reference Laboratories (IDEXX 2009), the primary source for

CAPC’s data: “These maps indicate reported… positives from more than 10,000

veterinary clinics, telephone surveys and IDEXX Reference Laboratories’

results.”

Armed with this, it’s a reasonable assumption that the data reported in the

IDEXX-based CAPC distribution maps were generated via consistent standards;

not, as in the CDC maps, generated via standards determined by individual

states. It should of course be noted that the inclusion of a statement about state-

If Lyme disease among dogs in Colorado (at 998) is considered “endemic,” then ehrlichiosis among dogs in Arizona (at 15,277, according to the same source) is positively rampant. However, unlike Lyme disease, “ehrlichia” can refer to a broad array of infecting agents, and I have been unable to ascertain whether the particular strain of ehrlichia reported on the CAPC map is capable of infecting humans or not.

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specified data does not necessarily mean the CDC’s numbers are flawed. After

investigating the reporting criteria for over a dozen states, it appears that most of

them adhere strictly to the two-tier criteria endorsed by the CDC (for example,

see WSDOH 2011: 3-4), although the veracity of the criteria itself is up for

constant debate (e.g., Stricker and Johnson 2007). Regardless, it is still a

reasonable conclusion that the problem is not with the CAPC data. Recall the

aforementioned quote by Chomel about dogs as “sentinels” for infections in

humans. As there is no known form of canine-specific Lyme disease, it is likely

that the CDC does not have an accurate account of Lyme infection rates in the

state of Colorado.

Based on the research and data presented in this section, it is evident

that the actual distributions of Lyme and its co-infections differ considerably from

their commonly ascribed distribution, and the majority of relevant evidence

seems to indicate that this lacuna will only continue to widen. Yet the “commonly

ascribed distribution” is still the unquestioned baseline for suspicion and testing

of Lyme and its co-infections for a tremendous number of health care providers.

The following section explores some of the reasons for this.

V: The Problem in a Handful of Nutshells

There is always a gap between scientific research and public information,

and rightly so. If every hypothesis-in-working was instantly disseminated to the

public before being submitted to adequate testing and scrutiny, then our

everyday knowledge about the world would be even more convoluted and self-

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contradictory than it already is. Every issue of Discover magazine would be a

medley of paradoxes, and archaeologists would come off like schizophrenics.

This is especially true in the medical sciences, where the stakes are higher and

the gap between research and the public is concomitantly wider. When the topic

is as contentious as Lyme disease, the gap has also to accommodate both sides

of a war.

So what does the public “know” about Lyme? Without interviewing 300

million individuals, probably the best way to measure public knowledge, or at

least the extent to which public knowledge is possible, is by investigating sources

of data that are public-oriented, easily accessible and not geographically specific.

A bookseller in Denver recommended what she considers three of the most

popular consumer-oriented books about general health: The Mayo Clinic Family

Health Book (Litin 2009), The Merck Manual Home Health Handbook (Porter

2009), and the amusingly titled Pathophysiology: An Incredibly Easy! Pocket

Guide (Buss and Lubus 2010). The results of this ad hoc local research project

were encouragingly positive: the Mayo Clinic’s book notes that Lyme is

transmitted by deer ticks “throughout the US” (Litin 2009: 465) and that tests

“aren’t always conclusive” (466). The Merck manual notes that Lyme is “usually

transmitted by ticks” (Porter 2009: 1165, my italics), attests that Lyme occurs “in

49 states” (ibid.), and does an excellent job of describing the three primary

stages of infection (1166-1167). And the Incredibly Easy! Pocket Guide

described Lyme disease as a “multi-systemic disorder” that “typically manifests in

three stages” (Buss and Lubus 2010: 116) and, unlike the other two, doesn’t

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even bother making statements about geography. So the public, in sum, has

access to a surprising amount of information on Lyme disease. Popular websites

also abound, but, as both logic and at least one study (Cooper and Feder 2004)

indicate, a lot of online sources are suspect.

Thus the gap between scientific research and the public; what about the

gap between scientific research and the people tasked with being the public’s

front-line in addressing medical issues: what about doctors? I have personally

interviewed about 30 current Lyme disease patients who were initially denied

Lyme tests by their doctors on the basis of geographic distribution. In Cure

Unknown, Pamela Weintraub (2008: 193; see also 194-212) recounts a number

of harrowing tales of sick patients being misdiagnosed, denied testing, and/or

outright turned away as the number of Lyme cases outside of the “so-called

Lyme zone” caused officials everywhere to tighten the reigns. The award-winning

2009 documentary film Under Our Skin presents its own handful of chilling

examples, including that of a California park ranger who demonstrated a Lyme-

diagnostic rash and classic neuroborreliosis symptoms, brought the infected tick

into the doctor’s office with him, and still wasn’t properly diagnosed until four

doctors later (min. 04:02-04:30). Denise Lange (2004: 18) also reports that

patients see an average of five doctors prior to diagnosis, although nothing is

said about distribution; the assumption is that it’s a nation-wide average,

including areas designated endemic and non-endemic. Therein lies the problem:

which areas are designated endemic and non-endemic for Lyme, and how true

are the designations?

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An inherent problem in mapping anything, from species ranges to climates

to coastlines, is a dilemma known to every cartographer in history: maps are

static; the world is not. Take, for example, the basic issue of the bacterium itself.

Transmission of Lyme disease is attributed to a bacterial spirochete of the genus

Borrelia, namely B. burgdorferi sensu stricto (s.s.); specific genospecies known

to cause Lyme disease are part of the Borrelia burgdoferi sensu lato (s.l.)

complex (Niścigorska-Olsen et al. 2008). There are 18 spirochete genospecies in

the bacteria group Bb.s.l., including the newly-described B. californiensis (Postic

et al. 2007) and B. carolinensis (Rudenko et al. 2009), and new variants continue

to be recognized and described (Rudenko et al. 2011; Bhate and Schwartz 2011:

622). These different genospecies cluster around discrete regions across the

world, but the exact borders of their ranges can be fuzzy (Rudenko et al. 2009).

In Montana, scientists are exploring the possibility of yet another unique Borrelia

genospecies that has adapted to local fauna (Weintraub 2008: 189).

Because of the strict insistence by the CDC that, in the United States,

Bb.s.s. is the only strain that causes Lyme disease (Bhate and Schwartz 2011:

622), infections that act like Lyme in every conceivable way, but from which

Bb.s.s. fails to be cultured, are relegated to the lesser title of “Lyme-like”

diseases (Hildenbrand et al. 2009: 1081). A favorite example is Southern Tick-

Associated Rash Illness, or STARI, which is associated with B. lonestari (ibid.;

Moore et al. 2003). The disease was originally called Master’s disease after its

discoverer, Ed Masters, who went to his deathbed insisting that it was nothing

more or less than Lyme disease (Weintraub 2008: 189-192). The question of just

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what is and is not Lyme disease, and just what is and is not a bacterial cause

thereof, is a quagmire – hence Dr. Joseph Burrascano’s piquantly vague

aphorism, “I think of Lyme as the illness that results from the bite of an infected

tick.” (Burrascano 2008: 3, my italics) The list of genospecies continues to

increase, having gone from 13 in 2008 (Niścigorska-Olsen et al. 2008: abstract;

Rudenko et al. 2008: 134) to 18-and-growing today (Rudenko et al. 2011:

abstract). In the face of this, researchers are seemingly limited to just two options:

continue to add ever more novel Lyme-like diseases to the medical canon, or

redistrict the Lyme landscape. At stake is nothing less than the health and

treatment options of tens of thousands of patients, so scientists are

understandably predisposed toward discretion. Yet the fact remains: recent and

continuing studies point toward “Lyme-like” conditions resulting from a

broadening spectrum of Borrelia strains.

In addition to the ongoing discoveries associated with Lyme and its co-

infections, it also appears that ecology plays at least some role in their ever-

expanding rates and distributions. In his 2003 book Six Modern Plagues and

How We Are Causing Them, Mark Jerome Walters makes the case for a direct

causal relationship between the health of forests and the proliferation of Lyme

disease. Based on various sources of investigative research – including a

computerized virtual forest (110) – an inverse correlation between diversity of

species in a given forest and the density of Lyme disease-infected ticks is

demonstrated, i.e., the greater the diversity, the lower the amount of Lyme

disease. This makes sense for at least one basic reason: rodents transmit Lyme

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disease to more than 90 percent of the ticks that carry them, at least in the

Atlantic coast region, while other, less common forest dwellers infect just 10

percent or less of their ticks (109), and reduced species diversity means better

circumstances for opportune scavengers like rodents. More specifically,

ecologists like Ostfeld and Keesing (2000) have demonstrated that small,

fragmented patches of forest contain three times as many ticks – and seven

times as many infected ticks – as larger, healthier tracts of forest (see also NSF

2011). These ecologists further contend that these species could be infected with

other emerging diseases, including some of the well-known Lyme co-infections.

So biodiversity is an effective agent at limiting what Pamela Weintraub

calls the “Lyme diaspora” in places rife with mice and chipmunks; what about

places that don’t have as many of those? It is now recognized that the Borrelia

burgdorferi sensu lato complex, as well as its vectors and hosts, have evolved

systems specific to different regions (Bhate and Schwartz 2011: 621). In

Weintraub’s book (2008: 188), University of North Forida epidemiologist Kerry

Clark is quoted as saying, “When you move from North to South, the diversity in

the natural ecology drives diversity in the Lyme Borrelia strains.” More recent

research by Clark has matched Florida strains of Borrelia – which, it should be

noted, vary tremendously from typical northern strains – with human patient

samples from Maryland, New York, New Jersey, Pennsylvania, Missouri,

Oklahoma, Arizona, New Mexico, Oregon and the state of Washington (189).

Finally, climate change – that perennially hot topic – appears to be having

other, similarly significant impacts on the geographic distribution of vector-borne

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zoonotic diseases like Lyme and its co-infections (Hildenbrand et al. 2009: 1079).

A recent study by researchers at the National Center for Emerging and Zoonotic

Infectious Diseases (NCEZID) cited four mechanisms by which climate change

can, and apparently does affect extant populations of both vertebrate hosts and

arthropod vectors: range shift, changes in host or vector population density,

changes in pathogen prevalence that would impact the frequency of contact

between hosts and vectors, and changes in pathogen load as a result of rates of

change in pathogen reproduction (Mills et al. 2010: 1507-1508). While range shift

is difficult to quantify given limitations in historic data trends, northerly range

shifts have nonetheless been observed for I. scapulus ticks, the most common

vector for Lyme borreliosis, babesiosis and human ehrlichiosis (1508). Changes

in population density have been observed among prairie dogs in Colorado and

deer mice in the greater Southwest – neither of which are known to harbor Lyme

or its co-infections, but whose changes in distribution may signal similar changes

in other known or unknown vertebrate hosts – following El Niño weather events

(1506). Changes of prevalence of pathogen load in host and vector populations

followed the same trends. And lastly, on the topic of increased interaction

between humans and hosts/vectors, the NCEZID study echoed the conclusions

of the studies by the NSF and Ostfeld and Keesing (1510):

Anthropogenic habitat fragmentation as a result of deforestation, agriculture, road building, construction of towns and cities, and other land use changes will impede migration, jeopardizing the existence of some populations. It seems intuitive that extinctions resulting in fewer species of host animals should decrease the number of potential zoonotic pathogens.

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[However] decreases in the species diversity of potential host assemblages have been associated with increased prevalence of infection by zoonotic pathogens in host populations… for vector-borne diseases.

Reasons for the counterintuitive increase of pathogens in ecological zones

with overall decreasing animal populations include, but are not limited to,

increased access to food by opportunistic little mammals – such as Lyme-bearing

mice – and increased interaction between them and the encroaching human

populations that precipitate habitat reduction and fragmentation in the first place

(see Ostfeld and Keesing 2000; NSF 2011; etc.).

The presence of Lyme disease in states that are considered non-endemic

or low-risk is commonly addressed in an evasive manner. In addition to the it

doesn’t exist here dogma, another favorite line is often trotted out alongside or in

place of it: it doesn’t originate here. In Montana, for example, a 2009 article in

the Billings-Gazette bears the headline, “Out-of-state bites boost Lyme disease

cases.” (Brown 2009) A fact sheet published by Colorado State University boasts

that “no human cases of Lyme disease have originated in Colorado.” (Cranshaw

and Peairs 2011) A similar bulletin published by the University of Arizona College

of Agriculture and Life Sciences states that, as of 2007, “no one has contracted

Lyme disease as the result of a tick bite in Arizona.” (UofA 2008) A publication

by the Utah Department of Health’s Bureau of Epidemiology, although eventually

noting that “a small number of individuals… may have acquired the disease in

Utah,” opens with this somewhat more commanding pronouncement: “Most

This despite an early-90s study that found B. burgdorferi present in at least 4% of ticks collected and sampled in Arizona’s Hualapai Mountains (Olson et al. 1992).

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people who have Lyme disease in Utah were actually bitten by a tick from

another state.” (UDOH 2010). And the CDC provides its own expansive

statement to account for all such issues on its Lyme FAQ webpage, noting that

“cases are sometimes diagnosed and reported from an area where Lyme

disease is not expected, but they are almost always travel-related” (CDC 2011c;

see also Boal 2012).

While statements such as these might be true, there appears to be no

uncontestable corroborative evidence supplied by the claimants outside of

mentioning a lack of known Lyme-bearing ticks in their respective regions. Given

the expanding list of Lyme vectors mentioned above, it is likely this line of

reasoning will not be able to sustain itself indefinitely. Furthermore, traveling

between states has never been easier or more common than it is today. Given

the unpredictability of incidence rates and locations that is developing around

Lyme disease, an assertion that travel is the culprit of its spread across the

landscape is essentially moot.

Tracking, studying and understanding the role of ecological impacts on the

distribution and prevalence of vector-borne infections such as Lyme and its co-

infections is tricky business – as mentioned, a lack of sufficient historic and

current distribution data about many animal species is, and will probably always

be, a hindrance. Thus it is very likely that ecological impacts are significant, but,

due to their complicated and poorly-documented nature, it is unlikely for medical

researchers to accurately predict how the geographic distribution of Lyme looks

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from one year to the next. Thus, it again seems prudent to abandon the it doesn’t

exist here dogma and grant Lyme serious consideration throughout the US.

VI: Discussion

In his final book, Dr. Stephen Jay Gould (2011: 34) made the following

observation about bias and obduracy among scientists:

The peculiar notion that science utilizes pure and unbiased observation as the only and ultimate method for discovering nature’s truth, operates as the foundational (and, I would argue, rather pernicious) myth of my profession… Bias cannot be equated with the existence of a preference; rather, bias should be defined as our unwillingness to abandon these preferences (or at least to challenge them further and rigorously) when nature seems to say “no” to our explicit searches and tests.

Given the controversial nature of the topic of Lyme disease, it is not

unreasonable to expect researchers, medical professionals and proactive

patients on either side of the so-called Lyme War to be obstinate. Discrepancies

are legion, and the bulk of these discrepancies result in both research scientists

and medical professionals falling back on either the it doesn’t exist here or it

doesn’t originate here rationale – demonstrating, in effect, Gould’s “unwillingness

to abandon preferences.”

Curiously, and heartwarmingly, not all discrepancies having to do with

Lyme and its distribution are inherently negative. Nevada, for example, is not

known as a Lyme hot-spot, yet the Nevada Department of Health and Human

Services provides a brochure on Lyme disease (NDHHS 2011) that is

27

surprisingly informative, mentions nothing about its lack of prevalence in the state,

and includes statements such as this:

Lyme disease is still mistaken for other ailments, and it continues to pose many other challenges: it can be difficult to diagnose because of the inadequacies of today's laboratory tests; it can be troublesome to treat in its later phases; and its prevention through the development of an effective vaccine is hampered by the elusive nature of the bacterium.

And this:

Although Lyme disease poses many challenges, they are challenges the medical research community is well equipped to meet. New information on Lyme disease is accumulating at a rapid pace, thanks to the scientific research being conducted around the world.

And the Southern Nevada Health District provides a similar, if somewhat less

comprehensive version of the same (SNHD 2011). This despite the CDC’s

reported tally of about 80 cases of Lyme infection in Nevada from 1990-2008

(see Figure 6) or roughly 28 percent the amount of cases reported from Kansas,

for which state no comparable publication seems to exist. An extensive study of

such pamphlets and publications, and the extents to which they are considered

helpful in their respective communities, would be of enormous value.

Another potential avenue of research involves studying Lyme distribution

with regard to lifestyle and local culture. In California, for example, current CDC

figures reflect about 6,000 cases of Lyme across the state. Although the figure

seems high, it is not nearly enough to qualify the state as Lyme-endemic.

However, because of its size and ecological diversity, California includes regions

28

of very low risk and regions that are highly endemic – in Mendocino County, for

instance, the average rate of infection among sampled ticks is 15%, and the

“outdoor lifestyle” popular in that area increases the risk of being bitten (MBC

2001). Moreover, a study in the Ukiah area revealed positive Lyme tests in about

24 percent of the residents and definite or probable Lyme infection in up to 37

percent (CDHS 2001). Ukiah is in the seat of Mendocino County and is

surrounded by popular hiking, camping and backpacking locations (BLM 2007).

All of this underscores a logical, if not scientifically validated correlation between

rates of Lyme infection and lifestyle. Most books, articles and brochures about

Lyme disease mention an increased risk among hikers and other outdoor

enthusiasts, but what about farmers? Park rangers? Land managers? Fruit

pickers? Archaeologists? In one personally reported case, an archaeologist who

works in western Utah reported having recently been denied Lyme testing by a

doctor in Salt Lake City on the grounds that “Lyme doesn’t exist in Utah,” despite

ample evidence to the contrary presented in this study (see Figures 3 and 5) and

elsewhere (Boal 2012). Verifiable research in such directions would thus be

extremely helpful for testing and diagnosis issues such as these.

Along a similar line, yet another possible avenue of further research is

investigating to what extent country-, state- and community-wide distributions of

infection are representative of people unable to afford or even find access to

accurate testing. Lab Corp reports that a Western blot, the standard second tier

test for Lyme disease, can run up over $900 by itself (personal communication).

Poor or underinsured patients might be able to get such tests ordered as

29

emergent care, but only in certified Lyme-endemic areas. What about poor or

underinsured people in areas where Lyme is present but poorly understood (i.e.,

just about everywhere)? What about places like the Navajo Nation, where state-

sponsored medical facilities are notoriously abysmal, and where both

domesticated sheep (a well-documented vertebrate host of Lyme in Scotland;

see BBC 2010) and free-range domestic dogs are profuse; where are the figures

for them? According to state-wide figures in Arizona, such data would probably

show very few, if any, cases of Lyme Borrelia infection, but “state-wide figures”

across the US are universally questionable and climbing. There is, therefore, an

increasing need for such data, no matter which side of the Lyme debate it

supports.

VII: Conclusion Having amassed and analyzed the material presented in this study, it is

evident that the currently-accepted geographic distribution of Lyme disease and

its co-infections is either incomplete or outright flawed. This does not, however,

necessarily call into question the ethics or integrity of the medical professionals

working on either side of the so-called Lyme War. Instead, in investigating the

Lyme landscape, it is evident that such hindrances as lack of data, discrepancies

in the available data, and continuing discoveries and alterations in the broader

Lyme complex will continue to contribute to lacks of consensus in the Lyme

landscape for some time to come. More importantly, both sides do seem to agree

Not to mention economic and political pressure, excluded from this study for the dual purposes of brevity and clarity; see Under Our Skin 2009, Weintraub 2008, and/or Lange 2004.

30

on at least the following: no matter what testing or treatment protocol one prefers

to support, Lyme cases are both increasing and spreading throughout the US.

In sum, given warm bodies to inhabit and no actual, physical barriers, a

complex and elusive bugbear like Lyme can – and, as most current studies

indicate, will – make its way across virtually any landscape. The dogmatic

presupposition that Lyme does not exist in broad geographic regions by medical

professionals is both erroneous and dangerous in an increasing range of areas,

and, considering the research and data presented in this study, it is advisable to

presume that it exists everywhere.

31

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