In the 2018 Report to Maine Legislature – Lyme and other Tick-borne Illnesses (dated January 31, 2019), which happens to be the tenth annual report and includes updates on activities conducted during 2017, the Executive Summary is outlined with information about the number of confirmed and probable cases, most common symptoms and a map of the state with a color coded chart showing the most endemic regions. This is valuable information for those studying the tick population and migration patterns.

What stood out to me, as the elephant in the room, was the comment made in under Section II of “The Diagnosis and Treatment Guidelines for Lyme disease recommended by Maine Center for Disease Control and Prevention and the US Dept of Health and Human Services, Centers for Disease Control,” paragraph two, third sentence that reads as follows: “Patients should be treated on the basis of clinical findings.”

There it is. The elephant in the room. Lyme disease has always been toted as a clinical diagnosis. The Maine CDC’s stance on Lyme and other tick-borne diseases is one of surveillance, not clinical diagnosis. For that, they defer to the Infectious Disease Society of America’s outdated guidelines for diagnosis and treatment. The Maine CDC does not give any direction whatsoever where clinical diagnosis steps are concerned. What they do agree on is prevention. That is something that we all agree on.

However, without adequate funding from the federal government or grants, statewide saturation of prevention is limited at best. Which is why I was so excited to see in the Portland Press Herald (May 7), an article from the Maine CDC warning residents to use repellent, protective clothing and to do daily tick checks as the warm season starts. To say that we’re finally on the same page would be a stretch but at least we’re starting to share the same message.

It is important to study our tick population and to report on new cases of tick-borne disease, but it is equally important to get our medical providers on the same page with updated information to benefit the patient. However, the controversy continues with ‘how do we treat the patient’ and I can’t help but wonder what are the roadblocks that we are not seeing that is preventing our doctors from getting on the same page.

The Maine CDC states that they only report evidence based findings and yet in that 2018 legislature report, the same information that has been circulated and purported for the last ten years about 2006 meeting between the IDSA and ILADS is once again mentioned with the IDSA’s ruling deemed as the standard for all basis of diagnosis and treatment.

Again the elephant in the room. Where is the updated evidence based science? There are two evidence-based proven guidelines and yet the Maine CDC only shares and promotes one. Where is the federal CDC’s mention of how fallible the current testing is? Where is the mention of Dr Ying Zhang’s study (of John Hopkins University) of persister cells being eradicated by a three drug protocol? Sadly, it is no where to be found in a report that is distributed to the very governing body that produces bills and makes laws here in our state. So the very people who are tasked with addressing the elephant in the room and making life better for patients afflicted with tick-borne disease are spoon-fed outdated and jaded information. And for what reason?

The message being pushed and promoted is about the rise of the tick infestation given the warmer weather and the need for more prevention. Who’s looking out for the patient? Where is the group that is standing up and pushing and promoting the wellbeing for the patient? There are groups standing and pushing and promoting but they are fighting with one another, doctors are being disciplined by medical licensing boards and patients are once again caught in the cross fires.

The outcome of the IDSA’s outdated diagnostic and treatment guidelines included a footnote that states that “guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgement with respect to particular patients or special client situation. The IDSA considers adherence to these guidelines to be voluntary, with ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”

There it is. Permission from the powers that be for medical providers to knowingly and willing act accordingly with each individual patient based on individual circumstances. And yet when they do, when they dare step outside the box of outdated guidelines or over the line to follow a protocol that they patient is responding to, they risk coming under medical discipline. All because the governing bodies tasked with disseminating information to the public and to medical providers, knowingly and willingly chooses to propagate outdated information.

If the Lyme community has to keep circling the drain and wasting precious time and energy constantly combatting old fire storms that refuse to get put out, then drastic measures must be taken. The tick problem is not going away, it is reportedly only getting worse. New tick species are being reported and with that, new tick-borne diseases. If we have the power and resources to address that, then surely we can allocate some power and some resources to helping the patients. That means better testing, better treatment, better insurance coverage.

In 1546, John Heywood English proverb stated, “You can lead a horse to water but you cannot make him drink.” Modern meaning, you can show someone something that will benefit them, but you can’t force them to accept it. People, like horses, will do as they will. So where is the safety net for those who exposure to a tick bite or worse, a tick-borne disease? Where can they go to get reliable and effective diagnostic and treatment measures?

Several weeks ago, I was honored to be a part of several meetings and phone calls that took place with members of Sen Collins’s staff and from that, was advised that she has taken a strong interest in this problem that the people of Maine are facing and she is prepared to do something about it.

Tune in next week and I’ll fill you in on the battle plan!

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 or visit www.mldse.org