The following report was filed by members of the Texas Lyme Disease Association and the North Texas Lyme Support Group.

By Lisa Todd Reed and Joy Sablatura Rockwell

On Sunday October 23, 2016, Lyme disease patients and advocates gathered at Barnes and Noble in Dallas, Texas for a special talk and a book signing by Dr. Neil Spector in connection with his book called “Gone in a Heartbeat:  A Physician’s Search for True Healing.” In addition, Dr. Spector spoke to over 100 congregants at the Unity Church earlier that morning.

Dr. Neil Spector is one of the nation’s leading oncologists and cancer researchers and has led in the development of FDA-approved targeted cancer therapies. Currently, he teaches medical oncology fellows at Duke University Medical Center and is the Sandra Coates Chair in Breast Cancer Research.

However, for those of us Lyme patients who attended on Sunday, we view him as much more than a cancer expert. We see him as a much-needed window into a new perspective for doctors to better understand how a Lyme disease patient can easily fall through the cracks.

We gathered round and listened intently as Dr. Spector spoke about his inspirational story and brush with death. He told us that a physician informed him on a Friday in July 2009 that he would be dead by Monday if he did not receive a heart transplant. Dr. Spector’s heart had been destroyed by Lyme disease, which had gone undiagnosed for four years, despite his repeated requests for help from his doctors.

As Dr. Spector looked for answers, his physicians repeatedly told him that stress was to blame for his fatigue, muscle aches and erratic heart beats, and that his Lyme test was negative. Some suffer with heart palpitations.  Others have joint pain, migraines, panic attacks, depression or a host of other symptoms. After years of living with diagnoses of fibromyalgia, chronic fatigue, MS, ALS, Bell’s palsy, arthritis and other chronic conditions, some of these frustrated patients finally discover the elusive cause – Lyme and/or other co-infections.

“I’ve always had a fond place in my heart for Texas since my days as a resident at Parkland Hospital/UT Southwestern,” Dr. Spector said. “I hope to raise awareness that there is Lyme in Texas, and it’s a clinical diagnosis, not dependent on a lab test result alone.”

Many doctors won’t treat if the lab test is not positive based on the strict criteria established by the CDC/IDSA guidelines, and an early case of Lyme is more easily treatable with a course of antibiotics.  “When doctors do not treat, and the disease goes undiagnosed, it can lead to persistent chronic infection and debilitating chronic symptoms, or even death,” according to Dr. Spector.

“I hope more physicians will be open minded regarding the deficiencies in current diagnostic testing for Lyme disease,” he said.  He also asserted that patients must “advocate for themselves, instead of giving away control of their health and lives to physicians who may not understand the nuances of Lyme disease.” 

He encourages patients to not be afraid to ask to be tested for Lyme and other co-infections. “Trust your gut instincts.  No one knows your body better than you do,” said Dr. Spector.

From a Lyme patient perspective, we feel as though Dr. Spector’s book could help bridge the gap between patients and doctors all across the country.  Ideally, after reading this book, doctors would be more open-minded and perceptive to their patients’ experiences, while utilizing their clinical skills to make diagnoses rather than be dependent upon unreliable tests.

In summary, we were delighted to meet with such an extraordinary individual. It’s not everyday that we get one of the nation’s leading medical researchers to validate our personal medical journeys by telling us how he understands what we have gone through due to walking in our shoes. 

With such an impactful background in research and development of cancer drugs, we can’t wait to see what Dr. Spector endeavors next in regard to Lyme disease research over the next decade. Based on what he told us about his upcoming research plans, some amazing projects are in the works. We are rooting for you, Dr. Spector!