As is often the case with Lyme-related questions in this region, this question has two important parts. One being which are we contracting within this geographic area, and the other being which are we contracting anywhere else that we travel to?
It’s challenging, but important, to distinguish the relative importance of each part of the question. As a patient in a time-sensitive quandary, it doesn’t matter where we contracted the illness as much as it matters that we can get timely and adequate diagnosis and care. But a current obstacle to both in this region, unfortunately, is the assumption that contracting it here is not possible, because it serves as a very large distraction and obstacle, regardless of where the exposure occurred.
The fact that you ‘can’t get it here’ is, sadly, often the only answer the patient receives–an untimely and unjustified end to what should be a lengthy discussion including a number of important questions.
This is a problem, of course, because we need medical care either way, and it needs to occur quickly to avoid the risk of permanent harm to the patient.
So the importance of proving we can contract Lyme in the Rockies is partly to overcome the wrong assumption that it is not a risk here, but also to overcome the biases among doctors that lessen the chances of due consideration of the likely cause of symptoms that present ‘just like Lyme disease’ but ‘can’t be Lyme disease’ (in most cases until the patient is able to travel out of state for a more informed opinion*, which is usually not happening fast enough to avoid long term consequences).
*Unfortunately, looking further into this issue, you will see the very quick dismissal of the informed opinions noted above as ‘quacks’ or alternative doctors. But please note, these authors don’t waste much time clarifying who they mean or how they so quickly reach this conclusion. I wish it had occurred to me early on as a patient (and as a biologist) that although these authors sounded credible at first, they would need to know hundreds of hypothetical patients and the identity of their doctors, and be privy to an awful lot of unavailable information to support this quite biased assumption. Information that would also warrant looking into why so many people were afflicted with similar symptoms in certain areas, yet not getting diagnosed or treated in-state.
When I first constructed this post, I began with a list of the Borrelia species and strains that quickly began to grow from the time of the discovery of Borrelia burgdorfori forward. There were multiple species emerging in Europe, Asia, and North America, some considered to infect animals only, some known to infect humans. I was initially enthralled as the list grew and grew in the years following, because the Lyme disease tests current guidelines allow for (meaning that insurance companies are not required to pay for others, despite inadequacies and inaccuracies of the current two-tiered testing strategy, which will be discussed in future articles) only test for one strain.
However, I have since found that even this growing list of species and strains I was finding was only a fraction of the currently identified species and strains in North America alone. There are over a hundred strains in North America and over 300 world-wide. So it is worth stating again that we are only testing for one strain of Borrelia, despite there being over 100 identified strains in the U.S. alone.
Per the International Lyme and Associated Diseases Society’s (ILADS) website:
THERE ARE 5 SUBSPECIES OF BORRELIA BURGDORFERI, OVER 100 STRAINS IN THE US, AND 300 STRAINS WORLDWIDEThis diversity is thought to contribute to its ability to evade the immune system and antibiotic therapy, leading to chronic infection
The narrow definition of vectors and strains responsible for human infection has been refuted, but please note that this definition also bore considerable uncertainty prior to that. This means that brief statements about the presence of Lyme in a given area without any supporting evidence or disclosure of uncertainties should be a red flag. If made very recently, the statements may be made by someone not in possession of recent science, but made at any time, may be made someone not entirely aware of the preliminary assumptions and questions that should be addressed to validate the statement.
I generated an initial list (already missing recently discovered strains) in trying to decide what strains would be meaningful on a sign at the 2015 Mayday Arlington rally, following some helpful map/Borrelia suggestions from a knowledgeable source and the suggestion to visit this page regarding Borrelia species. The following depicts the types of biases that seem far too prevalent in North America, and the tendency to down-play or omit relevant areas of uncertainty.
Most of the species on my initial list (from the link above) were not yet recognized in North America as infecting humans, even when recognized as infecting humans on other continents and present here as well (in other words, it was believed that these subspecies and/or strains infected people on other continents but left them alone here).
This largely depicts the dangers of assumption-based mapping and the role of detection effort. Take the following statements from the link above, regarding the first three species that were found to diverge from B.burdorferi after it’s discovery in the early 1980’s:
These species have been identified as: Borrelia afzelii, B. burgdorferi sensu stricto, and Borrelia garinii.
All of these three species are causative agents of Lyme disease in Europe, whereas B. burgdorferi is the only human pathogen in North America.
The assumption that B. burgdorferi is “the only human pathogen in North America” is not unique to this author. But is this reasonable to state when it is the only pathogen routinely (though poorly and inconsistently) tested for in North America?
Why is it not standard practice for the Infectious Disease Society of America (IDSA, the non-government entity that writes the guidelines for diagnosis and treatment referenced by the CDC and utilized by insurance companies to determine covered care) and CDC to clearly and repeatedly state this distinction wherever information is published about Borrelia distribution? If effort is being made to detect these other species, why is this not noted as well, clearly and repeatedly?
We should expect a hypothetical statement such as the following to be proven true, if thousands of patients’ health, quality of life, livelihood, and potentially their survival depends on these current assumptions: “Despite extensive testing, screening and surveys of symptomatic patients and potential tick and insect vectors, B. borgdorferi has so far been reliably demonstrated to be the only human pathogen in N. America (ref. to published data) and Ixodes spp. have so far been reliably demonstrated to be the only human vectors (ref. to published data).
We essentially state the above, though, conclusively and repeatedly on major medical sites and agency health sites, but without the elements that would make this a sound basis for determining what is or is not allowable medical testing and care.
We are currently in a dangerous predicament because we conclusively state Lyme is absent, even though:
- We are only testing for one strain
- We don’t know what strains may be present
- We are not consistently testing symptomatic patients based on the belief that Lyme is not present, and
- We are precluding the presence of Lyme disease because a specific vector is assumed to be absent (while failing to consider potential additional vectors)
Are there reasons to believe that Lyme is present here?
There are many reasons, anecdotal and not anecdotal, to believe that Lyme disease is present and reasons to believe that more than one strain is likely present as well.
Tenets of Science/Basic Scientific Inquiry
Patterns have emerged in the Rockies that have attracted attention.
- When these patterns have been dismissed, the rationale has been the same assumptions listed above rather than independent or specific review of evidence
- When patterns have been more closely reviewed, meaningful similarities have led to important questions warranting further and continued investigation
- When appropriate questions have been asked and answered, evidence has become available in those areas
Stay tuned for detailed illustrations of each of the above, as they have all occurred and been reported on, with information ready and waiting to be found and compiled.