This week’s article, I’m calling my Lyme Rant, is based on the outcome of my week-long stay at the Union Fair, from all my community interactions with people and from my 3-plus year odyssey as a Lyme advocate warrior. It’s based on firsthand experience as a patient, as an advocate and as someone who is not willing to settle for status quo.

As a society, we’re being fed conflicting information from many sources. One source says Lyme and tick-borne is hard to catch but easy to treat. Another source strongly recommends using repellent and prevention practices as tick-borne disease is on the rise here in Maine, with a heavy concentration in the Midcoast region. Another source (finally) admits that current testing is faulty and that a medical provider must go by clinical symptoms to make a diagnosis and treat, while yet another source states that in order for you to have a positive confirmation, you must meet certain criteria.

I’ve been writing for weeks now about the need for continued use of repellents and prevention practices because I am seeing firsthand that the number of new cases of Lyme, Anaplasmosis and Babesiosis continue to rise. Just last week, a local paper wrote about a man suffering from the devastating effects of Babesia. Early this summer, a 2-year-old, a teenager and a 41-year-old woman (all from out of state) died from complications from misdiagnosed Rocky Mountain Spotted Fever. And just two weeks ago, a Connecticut man died from complications with Babesia.

So on one hand, we’re told that Lyme and tick-borne disease is no big deal and on the other hand, the media is reporting preventable deaths. NO BIG DEAL? Tell that to the families who have lost a loved one due to complications from Lyme and tick-borne disease. With all the up-to-date research, with expert advice and instruction that for endemic regions, by all accounts Lyme and tick-borne disease is to be treated based on clinical symptoms and that testing is not always reliable. And yet, I am still hearing, years after fighting my own battle, that doctors are still relying on unreliable tests and treating with outdated guidelines. People are still walking around sick and there is no excuse for it!

If it walks like a duck and sounds like a duck, most of us would call it a duck, right? But what if, amid all that information, a provider continued to reference an online but outdated source in order to diagnosis you? Or worse yet, rely on information that they knew from years ago but have not gotten any up-to-date training on new guidelines, symptomology of co-infections and treatment options? If you always do what you’ve always done, you’ll always get what you always got, right?

I’m ranting because years after I was misdiagnosed and mistreated by educated medical providers, I am still hearing the same stories from today’s patients. Why? Why are people today still being misdiagnosed? Why, in this endemic region, are people still being mistreated. But more importantly, why are our medical providers in the heart of the endemic region not recognizing this immediately? Why are they not learning from the deaths and severe cases?

Medical providers from Yale, Harvard, John Hopkins and many other educational establishments are on the cutting edge of medical breakthroughs in hopes of making a difference in the lives of patients. With research constantly expanding, these doctors live in the up-to-date moment of testing and treatment options. They are discovering new strains, with new symptoms, resistant to mainstream treatment.

With all the available medical training, there is no excuse for doctors to be so divided where Lyme and tick-borne disease is concerned. The outdated IDSA guidelines that so many providers choose to follow has a single footnote at the bottom that reads as follows:

These guidelines were developed and issued on behalf of the Infectious Diseases Society of America. It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient's individual circumstances.

It ever intended to be mandatory, cannot account for individual variations or supersede a physician’s knowledge in light of each individual’s circumstances.

Rant over!

Paula is the president of the MLDSE, the Maine-partner of the national Lyme Disease Association and a member of Maine’s CDC Vector-borne Workgroup. She is also a survivor in remission from late stage neurological lyme and co-infections