Lyme Time with Paula Jackson Jones

Advocate Don't Aggravate

Wed, 08/07/2019 - 10:00am

What an odd title for a column about ticks and tick-borne disease. Or is it? It’s a part of my daily existence. As an advocate, I am always supporting people who have been affected by a tick bite or whose lives have been negatively altered by tick-borne disease. And one would think, that after years of public awareness about the growing tick population, that medically speaking, we as patients, would all be on the same page, getting the best possible care, with resources supporting us as we journey towards health and wellness. But sadly, I am still exposed to stories by patients who are up against the same medical push back that I personally faced ten years ago.

So, have we, as a society, evolved at all where ticks and tick-borne diseases are concerned? From where I am sitting, that is a resounding Yes! People are talking more and more about ticks and prevention than ever before. People are getting connected to resources and getting on track to take back their health. Even bad information is being called out when people hear it and Yes, there is bad information floating around with good information which can be very confusing and aggravating, not only to patients but to medical providers.

Let me put it bluntly. Things have evolved since Lyme disease was first identified and the initial protocol was established. Just like with any other disease, knowledge and experiences have changed and evolved. We now have more species of ticks carrying more than one strain of tick-borne disease. In the last ten years, since my tick bite, people have died from tick-borne infections that were not treated properly or fast enough before it spread to other organs and caused chaos. With other diseases, many medical providers do what is called informed consent. They discuss all options with the patient and allow the patient to make the ultimate decision regarding their care. So why are we still arguing over proper diagnosis and adequate treatment protocols when we know that testing is unreliable and treatment is not a one size fits all?

I like to use definitions when I write my column. It helps define the underlying content that I am trying to get across to the reader. By definition, “advocate”: a person who publicly supports or recommends a particular cause or policy. As an advocate, whether you're a medical provider or patient, you can voice your support or recommendation. Some medical providers share what has worked with other patients and some patients bring to the table something that they heard, read or received from someone that worked for them.

By that same token, the definition of “aggravate”: to make a problem or injury worse. Sometimes this is intentional, sometimes not. Sometimes, it’s as simple as lack of knowledge or fear-based management. I know of medical providers who want to work with the patient and consider alternative treatments but they were told not. A patient shared with me that their primary care provider told them that they received an email from “upper management” stating that at their practice, they do not believe that chronic Lyme disease exists and therefore, they do not treat it. Ok, let’s do one more. Definition of “chronic”: an illness or condition persisting for a long time or constantly reoccurring.

Take a deep breath and let it out. Welcome to my world as an advocate. I am constantly faced with patients whose medical providers deny them treatment or dismiss their symptoms all because they 1) do not believe that the patient could possibly be that sick from a tick bite, 2) because they do not believe in chronic tick-borne disease or 3) they do not have the knowledge or training to properly diagnose and treat chronic tick-borne disease. Now, why would this even be an issue, you ask? Because back when Lyme disease was first discovered, they only identified it as an acute condition. They created a “pre-requisite”, if you would, for all patients in order to be considered “positive and if you do not meet “all” those requirements then you do not have it. We know that symptoms vary patient to patient, as does the severity. We know this for a fact and yet, if you can only check off three out of five boxes, it’s a NO for you. Medical providers who do not fully understand tick-borne disease are using this methodology to diagnose their patients. With antiquated methodologies and unreliable testing, some patients just don’t stand a chance of getting a proper diagnosis.

So much has changed in the forty plus years since the initial protocols for diagnosing and treating “acute” Lyme Disease were established. For example, we now have several species of ticks, multiple strains of tick-borne diseases (two of Borrelia (Lyme disease)) and each require their own testing, each have their own symptoms, as well as common symptoms, and each have their own treatment. Now, if you are the unfortunate recipient of co-infections (definition: having two or more infections simultaneously), diagnosing and treatment can be challenging even to the most knowledgeable tick-borne disease provider. Knowing how to properly diagnosis and having enough resources to treat, knowing that all patients are not created equal, is vital to a patient’s recovery.

The upsurge of interest in reporting new tick species, migration patterns and increased tick-borne diseases at state and federal levels has taken on a life of its own. However, getting a clear and concise uniformed message out to the public is still a work in progress. Stop promoting outdated propaganda. Start promoting the need for year-round prevention, along with proper usage of repellent for skin and clothing. This could potentially reduce the growing number of new tick-borne disease cases. Getting medical providers all on the same page with diagnosis and treatment can and will reduce the growing number of misdiagnosed acute cases that become chronic. Those patients are the ones that fall between the crack, who are prone to living out their lives with debilitating symptoms that greatly affects their job and their family.

Advocate don’t aggravate. Let’s update and change the antiquated status quo. It’s time for us all get on the same page and be part of the solution, not the problem.

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 or visit