The great Maya Angelou once said “Do the best you can until you know better. Then when you know better, do better.” Or did she? I’ve researched where it has been claimed that Maya actually said, “I did then what I knew how to do. Now that I know better, I do better.”

So, what is the difference? Tone and attitude.

The first quote, while at first glance appears to be a pretty congruent abbreviation of the second, actually conveys a rather self-righteous and condescending tone. In fact, I've noticed that it's often conveniently used as a passive-aggressive dig (and one that I’m guilty of using).

The second quote is completely different. It’s more personal, holding one’s self accountable for one’s own words and actions. Many of us are guilty of doing what we know until we know better but that is where we reach a cross roads ~ once we know better, do we knowingly choose to do better or are we so comfortable in our own ways that we continue down a self-serving path?

This journey that I’ve been on for the past 10 years has taught me a lot about tone and attitude. If you want people to hear you, you need to watch your approach. You need to find middle ground and be willing to sit at the table and listen to one another. It is through those actions, that I have grown both as an individual, an advocate and leader of my nonprofit organization. I understand that at times, we can be angry with what we perceive to be a broken system. We can be outraged at the way we are treated as patients, knowing that other patients with chronically debilitating disease are being treated quite differently. We can feel defeated with every rejection we get whether it comes from a medical provider or the insurance company. We can feel isolated when friends and family walk away from an illness that they just can’t understand.

Lyme and tick-borne disease is not only the most misdiagnosed disease but also the most mis-understood. Heck, most of the time even us patients can’t wrap our heads around what is happening to us even though we are living it every day. And so yes, maybe our outward tones and attitudes are a bit defensive but walk a mile in our shoes before you judge us.

Our attitude is justified when what we’ve been claiming for years is finally revealed. Just this week, in Emerging Infectious Diseases (a peer-reviewed journal tracking and analyzing disease trends) published a report called Seroprevalence of Borrelia burgdorferi, B Miyamotoi and Powassan Virus in Residents Bitten by Ixodes Ticks, Maine, USA (you can read the full report here: https://wwwnc.cdc.gov/eid/article/25/4/18-0202_article)

In a nutshell, the report concluded higher than expected results with Borrelia burgdorferi (Lyme Disease) and that they believe that B. Miyamotoi is not only transmitted by all tick stages but also underdiagnosed here in Maine. The problem that I have with the report is this line “Nonetheless, our findings might represent overestimates or underestimates of actual exposure to these agents because of false-positive or false-negative results.”

So, on one hand, they are saying that they are surprised that the results are higher than they would have expected (per previous reports) and on the other hand, they are wishy-washy on “exposure to these agents.” Why? “because of false-positives or false-negative results.” Ah, so we’re back to that again. We already know that the current testing most labs use is unreliable and that patients can get false-negatives due to their bodies not producing enough antibodies. Per the federal CDC website “laboratory testing is helpful if used correctly and performed with validated methods.” If used correctly?

I feel like we’ve come so far to only acknowledge a fraction of what patients have known and have been claiming all along, that tick-borne diseases are far more prevalent than what is being reported. Ten years ago, the Centers for Disease Control and Prevention (CDC) were reporting 30,000 new cases. That number is now at 300,000 and those are only the cases that meet all their criteria.

On their updated website (Dec 2018), the CDC stated “If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks.” So, are they referring to misdiagnosed cases or to those who were given a shorter treatment dosage and then told their patients to “walk it off” and that “in time they would get better?”

Results of a 2015 CDC study reported as follows: Project 1 (Lyme Disease diagnosed by large commercial labs in the US). Estimated number of people who tested positive based solely on data obtained from a survey of clinical labs (on a range of 240,000-444,000), researchers estimated 288,000 infections occurred among patients in 2008. Project 2 (Clinician diagnosed Lyme Disease) based on medical claims obtain by large insurance database, researchers estimated 329,000 (from a range of 296,000-376,000).

“In conclusion, our findings underscore that Lyme Disease is a considerable public health problem, both in terms of number of cases and overall health care use. Furthermore, as with other conditions, underreporting in the national surveillance system remains a challenge. Continued research and education are necessary to enhance prevention efforts and improve diagnostic accuracy to reduce the effects of this disease.” [https://wwwnc.cdc.gov/eid/article/21/9/15-0417_article]

We know testing is faulty and that insurance companies are constantly denying patients coverage of medical treatments and doctor visits because their qualifications for coverage are restricted by IDSA guidelines (see next week’s article for more about the patient lawsuit filed against the IDSA and eight large insurance companies), so I ask, “Why are we using this information when everything around us screams that it is unreliable, faulty and not working? Why are we dragging our feet and pussy-footing around a subject matter so endemic and so brutally debilitating? Why can’t we stop wasting precious time and money trying to underscore one another when we could work together to solve this worldwide health crisis?”

The moral of this point is to remember that we are all doing the best that we can, in the moment, with what we know and with the tools that we have been given. No matter how you get there, at some point, you come to a new understanding and well, as we know, tone and attitude is everything. So, now that it is public record, now that they “know better”, we are raising the bar and holding those accountable to this new level of understanding to “do better”.

Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org and visit her website www.mldse.org