Connecting the Dots: Palatal Myoclonus, Glossopharyngeal Neuralgia, Eagle Syndrome, Lyme Disease, and Babesia is my second book, and is devoted entirely to documenting the details of my son Jacob’s medical case. It includes the process of identifying relevant symptoms listed year by year, diagnosing my son's disorder, navigating the medical field and different specialties, and exhausting every treatment option we could  find for his palatal myoclonus. His path toward healing included medications, surgeries, and alternative medicine. Dosing, side effects, and all treatments and tests were shared in great detail. I also shared the advocacy efforts that were necessary to educate the teachers, nursing staff, and school administration to ensure a proper education.  

Some of our efforts failed and some succeeded.  The search for a cure revealed he had more than one rare disease. Apparently, there were other factors involved that caused his excruciating pain. After visiting more than thirty doctors over the course of a decade, we diagnosed and cured our son through the help of strangers on social media. Then a nurse with experience and common sense told us to retest Jacob for Lyme disease and co-infections despite a previous negative test. We believe this myriad of rare diseases may all be connected to undiagnosed tick-borne illness, Lyme disease with co-infection of Babesia.  While it sounds simple, I assure you that tick-borne illness is anything but simple.

After years of medical issues, my son, Jacob, was diagnosed with palatal myoclonus, an involuntary tremor disorder. Over time he developed pain that was debilitating. His symptoms continued to progress to other parts of his body. He was homebound and incapable of learning in school. The medical profession had little to offer him, but we chose not to give up.

We tried everything we could find including medication, acupuncture, Ayurveda, changes in diet, Botox, surgeries, hypnotherapy, chiropractic manipulations, plus more. Some of our efforts failed and some succeeded—temporarily. Our search for a cure revealed he had more than one rare disease. There were other factors involved that caused his excruciating pain. With the help of strangers via social media, we diagnosed our son with Eagle’s syndrome. Subsequent events were inconceivable. When we thought we were finished, we started all over again.

This is a true story of perseverance, suffering, love, courage, and a passionate desire to cure an impossible disease. We lived one day at a time, one hour at a time, one moment at a time—until that day when our child was pain-free.

Sherri Jonas, MBA, CPA (on inactive status), is a wife and mother of two. She has a sincere desire to share her son’s story with the intent to help others who are struggling with medical challenges. Navigating the medical profession can be overwhelming, especially when you are dealing with rare disease. Her son’s case has sparked interest in publication in medical journals.