Madison Area Lyme Support Group

Dr. John Aucott, Director of the Johns Hopkins Lyme Disease Research Center, recently delivered an overview of Lyme and other tick-borne disease research. You can watch a replay of his presentation below.

What follows is the introduction to Dr. Aucott by Shireen Rusby, one of the founders of Maryland’s Lyme Care Resource Center.

May is Lyme disease awareness month. Like any “awareness” effort, the intent is to increase the attention to and appreciation for the subject. In the case of Lyme disease there is a particularly powerful irony to the concept of awareness. Lyme disease is an illness that is often hidden and its symptoms unrecognized, yet the patient can be so overwhelmed that there is little reprieve from the self-awareness that dominates each day.

Those of us living with Lyme disease, as well as those living with many other long-term, hidden health conditions, have experienced very similar scenarios – the body’s natural inclination toward homeostasis is challenged.

Balance becomes harder to achieve and maintain. Lyme has imbalanced us, COVID has imbalanced us, ME/CFS has imbalanced us, dysautonomia and POTS have imbalanced us. So while our bodies, minds and spirits are making constant efforts to balance and rebalance physically, mentally and emotionally, what is the impact of stressors on a system that is already experiencing overload?

Well, that’s a whole thesis in and of itself and we’re not going to cover it tonight. But there is one stressor that we can increase “awareness” of this evening. For members of the Lyme community and those of other hidden illnesses, the challenges of dysfunctional homeostasis are compounded by the emotional strain of invalidation.

What interferes with healing

When we then begin to doubt our own reality, we make efforts to normalize the abnormal state of our being and that in turn leads to an even greater maladaptive response and further interferes with healing.

In his book, Conquering Lyme Disease, Dr. Brian Fallon states: “The experience of being disbelieved and misrepresented over and over is inherently traumatizing. Some patients…have identified this atmosphere of disbelief (and the resulting social isolation and self-doubt) as the single most stressful aspect of their illness experience.”

Some of you may have seen the movie Avatar. It is a futuristic story of human beings landing on another planet and attempting to conquer the native people of that land. When greeting each other, these natives to whom we are supposedly superior, look each other in the eye and say, “I see you.”

This simple phrase encapsulates much of our ongoing struggle in the medical world. It speaks to a fundamentally necessary component of the practitioner-patient relationship that is at times absent in this journey with invisible illness.

Many medical professionals may not know where to turn when blood work looks normal and verifiable analytical tools fail to provide objective evidence. The simple truth, however, is that an absence of evidence is not evidence of absence. That quote, often attributed to the astrophysicist Carl Sagan, can serve as an incredibly powerful guiding principle when it comes to illnesses like Lyme disease.

The art of inquiry

Our lack of comprehensive and neatly packaged scientific proof need not preclude our awareness and acknowledgement of the situation. Rather, this is an opportunity for us to practice the art of inquiry as the necessary first step on the path of healing.

And certainly, there is no one path of healing in illnesses as complex as Lyme disease, and that adds to the challenge for both the patient and the practitioner. The fractured Western paradigm of medicine, in its tendency to compartmentalize and classify health as black or white, present or absent, positive or negative often fails to recognize the holistic nature of human suffering.

But the path of healing is first paved with recognition of and respect for the imbalanced body, mind and spirit.

Our journey to regain and retain balance begins again each day. In paving this path let us remember to turn toward the light especially when it seems dark, and let us use the tools of compassion and understanding to help one another.

Fostering awareness of this hidden yet ever-growing health pandemic will increase the opportunities for healing, and will turn the tide against the history of glaring invisibility and deafening silence.

We have as our guest speaker tonight someone who has made it his mission to foster the awareness of Lyme disease. He has paved the path of healing for countless Lyme warriors with sound practices and with stellar science.

John Aucott and his amazing team at the Lyme Disease Research Center, have partnered with many, first and foremost with the patients they serve, to produce the scientific evidence necessary to authenticate many of our struggles – struggles which we have experienced for months, years or even decades, while seeking out the rare practitioner like him who looks at us and says “I see you.”

For your endless support, for your validation of what we endure, and for your ongoing efforts to find the evidence that may have once seemed absent –we offer our endless gratitude.

http://  Approx. 2 hours

LCRC May 2023: Advances in Lyme Disease and Tickborne Disease Research

Dr. Aucott will be discussing research advances in Lyme Disease and Tickborne Diseases, including an update on diagnostics, potential biomarkers, advanced neuroimaging, and future treatments.