Lyme Time with Paula Jackson Jones

No matter what, you matter

Posted:  Wednesday, February 21, 2018 - 1:00pm

Back in November, I wrote a column titled Who You See Matters and I wrote about the variances in care (re: tick-borne disease) that a patient gets depending on how much knowledge the provider they go to has. I went on write how even specialists can specialize on a wide range of illnesses/disorders that fall under their scope of training or on a specific illness/disorder. This normally occurs when a provider takes a special interest or has a vested interest in learning more about a particular illness. Many times, it’s because it hits close to home.

Nothing in Maine hits closer to home than tick-borne disease. It affects our families, our neighbors, even our pets and all too many times, it is initially misdiagnosed. If you happen to be one of the lucky ones that presents with a classic bulls-eye rash, then you will most likely get treated. Did you know that not all tick-borne diseases cause a bulls-eye rash and less than 50 percent will at all? Will you get the proper treatment, is the question at hand, when there are multiple treatment options? How do you know if you’ve been properly diagnosed and treated? In a state where tick-borne disease is on the rise and co-infections are the norm, has that provider ruled in or out any other co-infections that would hinder your recovery and if left untreated, would cause further damage from untreated infection.

Who you see about a potential tick-borne disease infection does matter ~ because you matter. If you are the main provider for your family ~ what is your plan should you become disabled from misdiagnosis and untreated tick-borne infection? Who will provide for your family as the mounting medical grow and your strength and resolve weaken? Or perhaps you’re the stay at home mom who takes cares of the home, the shopping, the cooking and the needs of your children. What is your plan when you can no longer get out of bed? When shopping is impossible because your cognitive issues impair you from even driving. Take it from someone who has been through it and who talks to thousands of people around the state of Maine who live with this every day ~ even the best laid plans will fail you.

But you matter and this never should have gotten this far. But it did and for several reasons. We may adore our primary care providers but many are just not trained enough to treat chronic Lyme Disease, let alone Lyme complicated by co-infections. This is one of the missions of my organization is to continue to foster education where needed. Because you matter. You deserve to go to someone that you trust, who knows you and get the best possible treatment for the most accurate diagnosis. In the four years of my doing advocacy, a shift has occurred where we are seeing providers reach out to consult with providers who are more knowledgeable on tick-borne disease. We are seeing co-care between multiple providers with a patient. This is a huge step in the right direction ~ because you matter. You deserve the best clinical assessment by a provider who not only understands the complexity of tick-borne disease but has the best diagnostic tools and a full range of treatment options to walk you back into full health. There is no one size fits all approach to treating tick-borne disease.

Recently, a young woman diagnosed with chronic Lyme had undergone a psychiatric evaluation and was accused of “faking it,” with the attending psychiatrist telling her “no one scores that badly.” Timely enough, I had received via email, a copy the current American Psychiatric Association Practice Guidelines for the Psychiatric Evaluation of Adults (Third Edition 2016), with a note drawing my attention to page 11 Medical History. It was a list of Medical History and second to the bottom it read: Past or current infectious disease, including sexually transmitted diseases, HIV, tuberculosis, hepatitis C, and locally endemic infectious diseases such as Lyme disease.

Dr Robert Bransfield, MD, DLFAPA, clinical assoc. professor of psychiatry at Rutgers, has accumulated over 700 articles citing chronic infection associated with tick-borne disease and has presented countless talks and presentations on the psychiatric manifestations and impairments caused by tick-borne disease. And yet, we have adults, being treated like the woman previously mentioned, and children being institutionalized and given psychiatric, behavior-modifying drugs all because who they see doesn’t understand the psychiatric manifestations a tick-borne disease can cause.

What’s worse? Being misdiagnosed and allowing an infectious disease to spread, systemically wrecking havoc on your mind and body or being told that your faking it or worse, crazy, and being hospitalized? If you have the time, I highly recommend that you read Ally Hilfiger’s book “Bite Me” and then you will have your answer. Ally went through both and came out on the other side with a telling tale.

As much as I share with you about prevention, I would not be doing this cause justice if I didn’t share the controversy and the struggles that come with having a tick-borne disease infection. And if that isn’t enough to scare you into having a prevention plan, I don’t know what will. I want to prevent you from this horrific disease by educating you on prevention. I want your eyes wide open to what happens if misdiagnosed or mistreated.

Will you remain chronically ill and symptomatic because you were misdiagnosed, undertreated and told it will go away in time? Or will you reach out and get the help that you need and deserve? Because you matter and who you see matters and will determine how your story will read out.

Paula is the president of the MLDSE, the Maine-partner of the national Lyme Disease Association, a member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at