I started this blog because Lyme disease, at the time of this post and at the time of my diagnosis, is not acknowledged in the state of Montana. A reasonable amount of research shows reason for doubt, and just a tad more proves otherwise. But the claim of it’s absence kept me misdiagnosed for 3 extra years, eventually leading to the loss of my career. Had a I not believed state health department and CDC websites, and had my doctor not believed what she read, I would most certainly have looked harder at Lyme disease sooner.
Montana patients (and citizens) are far from alone in this dangerous loophole. So, much of what I write (and much of what I push for behind the scenes in working with larger organizations) hopefully applies to other under-protected, under-informed, and under-recognized states as well. There are many pitfalls and obstacles to proper Lyme disease diagnosis and care globally, so this blog by no means sticks to the state of Montana, nor even to under-represented states.
But, this post will stick to Montana from here forward (though you’ll see plenty of overlap if you live in a state not represented on CDC’s ‘distribution’ maps) and will be added to over time. It has been fascinating to watch each t.v. news story I can recall conclude with the same statement that Lyme disease has not yet reached the Rockies (in the rare instance that Lyme disease is covered, other than to state that we don’t have to worry about Lyme, but there are other tick born disease to be wary of–a few examples will be given at the end of this post).
Fascinating is not a strong enough word for what I’ve read on agency websites and in agency publications. The most frustrating is an NIH document titled, “Looking for Lyme in all the wrong places” and I can’t help but wonder each time it comes up in search result what we might know if time and money were spent on research instead of propaganda. You will find my language and word choices have gotten stronger and stronger as the time since my proper diagnosis increases, and this an unavoidable consequence of an education in this illness and it’s politics.
Important Points for Montana:
- Standard tests are inaccurate and in Montana, they are often applied improperly, ineffectively, or not at all.
- The CDC and state health agencies state that no cases have been contracted in Montana, but this has not been appropriately investigated or tracked, and there are numerous (CDC positive) patients that contracted Lyme in Montana.
- Most patients have to travel out of state for proper diagnosis and care, regardless of where they contracted Lyme disease.
- Most Montana doctors are not familiar with Lyme disease. Lyme is a clinical diagnosis; laboratory tests can be useful confirmation but many patients with Lyme disease may test negative, especially on standard tests. Most doctors in Montana are not aware that Lyme is a clinical diagnosis, nor that tests are outdated and inaccurate, so that misdiagnosis, delayed care, and prolonged treatment are the most likely scenario for patients in Montana.
- Although the lack of deer ticks is stated to be the reason why Lyme cannot be contracted in Montana, we are not currently surveying tick distributions, so we don’t know whether deer ticks are present or not. North Dakota stated the same thing until they surveyed for deer ticks—not only were they present at most sites, they were also carrying Lyme disease. Migratory birds carrying ticks enter the state from Lyme endemic areas every year and ticks are documented to be increasing their ranges.
- Deer ticks are not the only ticks that carry and transmit Lyme disease, and the list of non-tick vectors is growing.
- States not considered endemic are less likely to properly diagnose patients and the public is less likely to apply needed prevention measures, based on a study that found Montana least likely to identify Lyme disease of the states compared (Harrington et.al, 1997).
- The only study to investigate Lyme prevalence in Montana looked at Bitterroot County and recently found more cases than expected and cases that were likely contracted in Montana.
There’s no end to the stories of loss and pain brought about by misdiagnosis. It may sound dramatic, but it’s not an overstatement, so please help in way you can—by learning, sharing your story, joining causes shared here that need help, or being ready to cast an informed vote.
There is better science available and using it will help more Montanans receive answers and care. Although you will often hear and read that there is “no evidence” of various aspects of Lyme disease, you will quickly find that a) that is not the case, and b) if it were the case, that would not be a proper rationale for drawing and defending unsupported conclusions. If you are new to Lyme, you will have to see and learn for yourself over time that the basic tenets of science and logic fly out the window with the current CDC and IDSA (Infectious Disease Society of America) handling of Lyme (you find several articles on this blog giving background on the role the two have played in Lyme policy and the mishandling of Lyme disease in the U.S. so far).
I’m sick, so this is an ongoing project, but I hope to cover or at least link to the following:
- Relevant Questions for Montana (most won’t be associated with links in the near future because links are largely or entirely unavailable)
- Montana Ticks
- Distributions and Related Information
- Evidence that Additional Tick Species Transmit Lyme to Humans
- Survey Data If Any Becomes Available (see North Dakota’s Recent Results)
- Montanans With Lyme
- Related Illness from a Related Tick?
- Related Media Coverage
- Government Information To Date
- Diagnosis and Treatment Guidelines To Date
Relevant Questions for Montana
These aren’t conclusively answerable at the present time, but should be on the radar of state health agencies. These would be applicable even if their current position on Lyme disease were partly or entirely correct, as these would still be critical to know in discerning that to be the case and in formulating effective surveillance and mitigation strategies moving forward.
- Which tick species are present in Montana?
- Are there seasonal distribution changes based on migratory species or other factors?
- How many of Montana’s tick species transmit Lyme disease to humans?
- Based on high profile peer reviewed research demonstrating the expansion of black legged ticks species continent wide, what new species should we expect are now present in Montana?
- How soon can we expect tick survey efforts to occur, similar to those that found black legged ticks carrying Lyme in North Dakota during the winter of 2014/2015?
- How can we educate doctors to diagnose and treat Lyme disease here in the state of Montana?
- Why does our geography preclude proper testing for Lyme disease, and proper application of current diagnostic knowledge?
- How many Lyme patients live in Montana?
- How many Lyme patients are able to get Lyme literate care from an MD within the state of Montana?
- How many patients have to travel out of state for care?
- How many patients were told they did not have Lyme disease in Montana but were properly diagnosed out of state?
- How many patients have contracted Lyme disease in the state of Montana?
- If Lyme disease or black legged ticks were truly absent in Montana presently or in recent history, what is the mechanism by which you would become aware of their arrival?
- How will your state publications and websites be updated to reflect uncertainties based on past and present research, particularly the recent study that confirmed Lyme disease has been contracted in Montana?
- Why is there no record of the 1988 CDC confirmed case of Lyme contracted in Montana in state surveillance records?
- Why are so many CDC positive Lyme patients not showing up on surveillance maps?
- What were the results of research efforts investigating a potential Borellia species being transmitted via wood ticks?
Preliminary list of links
Lyme in Montana
- CDC Lyme statistics (all Montana cases are stated to have been ‘contracted elsewhere’, but keep in mind that cases contracted here are excluded from consideration as lyme until a ‘first case’ is documented) http://www.cdc.gov/lyme/stats/chartstables/reportedcases_statelocality.html
- Highly upsetting Op Ed piece form Montana Infectious Disease Doctors http://missoulian.com/news/opinion/mailbag/lyme-disease-not-endemic-to-montana/article_e2fd6136-068d-11e3-8c8a-0019bb2963f4.html
- http://montana.providence.org/health-resources/health-library/content/?contentTypeID=85&contentID=P00849 (need to update tick information)
- Ravalli County Lyme Disease Study
- Patient stories and links
- Ravalli Republic, April 2013, Story of the Bitterroot founder of Twyst of Lyme: Raising awareness: Victor woman discusses her battle with Lyme disease
- My story in Hungry Horse News spring 2015–Ticks: One Woman’s Warning
- Great Falls Tribune Article from 2013
- Patient Contact Bios on Northern Rockies Lyme Disease Coalition website
Public Health Information To Date
- http://nwda.orbiscascade.org/ark:/80444/xv09239 montana entomology board records
Entities to Contact?
- http://www.mtpca.org/contact.htm Montana Primary Care Association