Lyme Time with Paula Jackson Jones

Marred expectations

Posted:  Saturday, December 16, 2017 - 8:00am

There are times in our lives when our expectations are marred by the reality of the situation. Take the holidays for example. Children behave as best they can, sit on Santa’s lap and leave milk and cookies, in hopes of finding a new bike, Xbox, pony or puppy under the tree Christmas morning. For some, those expectations are met. For others, the expectation is marred by circumstances whether it be due to financial issues or some other issue beyond the comprehension of the youngster.

Beyond comprehension is where Lyme patients reside. They don’t feel well so they go to their medical provider with the expectation that they will be treated and returned to good health in a quick fashion. Back in 2009, I had the expectation at that initial visit with my medical provider that I would find answers and get better and when that didn’t happen, visit after visit, provider after provider, I began to lose hope of ever feeling better again. Each day, I woke with the sunken expectation that someone would ever figure out what was wrong with me and help me to get better. I just couldn’t understand how all these doctors that I saw were unable to get me better and once diagnosed in 2011, I couldn’t understand how all those doctors missed what was wrong with me. Now it’s 2017 and patients with tick-borne disease are still facing that same marred expectation.

Getting to the Why a patient remains symptomatic is the biggest hurdle a medical provider faces and using fallible diagnostic tools and following outdated guidelines and antiquated protocols, they might as well have one arm tied behind their back.

World re-known Lyme and tick-borne disease expert, Dr Richard Horowitz writes, in his 2013 book, “Why Can’t I Get Better?” about diagnosing, treating and healing Lyme, and peeling away the layers that lead to chronic disease. Practicing in Hudson Valley NY, a hotbed of Lyme Disease, he quickly realized that many of the chronic disease diagnoses people were receiving were also the result of Lyme and, in the absence of timely intervention, could cause disabling conditions. In a field where the number of cases is growing exponentially around the world and answers remain elusive, Dr. Horowitz created a 16 Point Differential Diagnostic Map, the basis for his revolutionary Lyme treatment plan and an overarching approach to treating all chronic illness. He introduces Multiple Systemic Infectious Disease Syndrome (MSIDS), a new lens on chronic illness that may prove to be an important missing link. He covers in detail Lyme's leading symptoms and co-infections, including immune dysfunction, sleep disorders, chronic pain and neurodegenerative disorders - providing a unique functional and integrative health care model, based on the most up-to-date scientific research, for physicians and health care providers to effectively treat Lyme and other chronic illnesses. In 2017, he published “How Can I Get Better?” a follow up book outlining and mapping out well established and effective treatment protocols. Having treated over 12,000 patients with extraordinary progress, his outline represents a crucial paradigm shift, without which the suffering and marred expectations will continue.

There is medical misunderstanding that Lyme is hard to get but easy to treat and that we can apply acute protocols to chronic diagnoses and patients will just naturally get better. What other disease would be treated is such a negligent manner? Would a cancer patient be allowed only one round of treatment and denied further treatment? Would an MS patient be shut off from their meds after 30days? As a society, we know that is an unrealistic expectation. As a Lyme community, we know from experience that there is no one-size-fits-all approach to treating a patient afflicted with Lyme and/or tick-borne disease and, yet many providers are doing just that.

So where do these marred expectations come from? Patients have the understanding that their primary doctor can solve many, if not all, of their medical issues however, unless they are personally trained in the complexity of tick-borne disease, that is a marred expectation. Another misconception that mars our expectations is the notion that “broadly accessible” and “widely available” means “patient affordable”. Many find their insurance company denying their medical visits or necessary treatment coverage and out of pocket expenses leads to an incomprehensible desolation. I talk to people daily on the phone and via email, sobbing and expressing a desire to regain health and their fears of it never happening. As I wrote about several weeks ago, who you see determines the outcome of your diagnosis and recovery.

I believe opening our hearts and minds to changing the status quo and increasing education by integrating experts knowledgeable on Lyme and tick-born disease will greatly reduce marred expectations and produce a more healthy and abundant community.

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