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Revising the Lyme Landscape Ralph Burrillo Graduate Student, University of Utah Department of Anthropology Contact: ralph.burrillo@utah.edu 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. How
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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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