How Do We Know A Champion?

The email came five years ago from a friend in North Carolina. Teresa Simmons told me about a Duke cancer researcher who had undergone a heart transplant because that vital human organ of his had been destroyed by Lyme disease. Would I help him with publicity?

Teresa is one of many people I have toiled shoulder-to-shoulder with in an effort to address the explosion of tick infections in the United States. Those infections can destroy a person’s health and too often take a life if not treated early and aggressively. But that’s a blog post for a different day.

Neil Spector, MD was that researcher, and today it breaks my heart to have to write the word was to describe a man who was a champion for so many.

The word champion comes from French and Latin and means “one who fights on behalf of another or others, one who undertakes to defend a cause.” Neil Spector was a champion for his breast cancer patients; he was a champion for those locked in the struggle to be rid of their tick infections. At the time of his death, he was the Sandra Coates Associate Professor of Breast Cancer Research,
Department of Medicine as well as the Associate Director of Clinical Breast Cancer Research at the
Duke Cancer Institute.

Neil grew up in Livingston, New Jersey, and after receiving his undergraduate degree, he became a physician at what is now Rutgers-New Jersey Medical School. Neil then matched with the University of Texas-Southwestern Medical Center, Parkland Hospital with the intentions of doing a residency in Neurology. His intentions changed; he finished his residency in Internal Medicine at Parkland in June 1986.  Dr. Spector was then accepted into a medical oncology/hematology fellowship at the Massachusetts General Hospital (1986-1989) before transitioning to the Dana Farber Cancer Institute doing research in the Division of Tumor Immunology and attending on the bone marrow transplant service (1989-1993).

Cancer research was his interest. Breast cancer, his passion.

Neil met the love of his life at Dana Farber, Denise Spector. The two wed and left for Florida where Neil would continue his research at the University of Miami School of Medicine. He would also oversee the bone marrow/stem cell transplant program. Little did he know, however, that after arriving in Florida, he would learn what it was like to be under the stethoscope as opposed to having the stethoscope in his own ears.

One evening while he and Denise were driving home, Neil experienced “every textbook symptom of a heart attack.” He managed to get himself to an ER where doctors found nothing wrong. The physicians attributed the episode to stress. But what Dr. Spector believed to be true, and what he ultimately learned, was his symptoms had nothing to do with stress at all. In fact, they were related to Lyme disease, caused by an undetected tick bite, which went undiagnosed and untreated for four years.

When medical professionals would tell me there’s nothing really wrong with you, it was not a relief. It was actually one of the worst feelings. I was caught in limbo between what I was being told and what I knew in my heart was the truth.

Gone in a Heartbeat: A Physician’s Search for True Healing, p. 57

Neil lived for 12 years with 10% heart function. His cardiac surgeon implanted an AICD (an Automatic Implantable Cardioverter Defibrillator) to protect against potentially fatal arrhythmias. An AICD shocks the heart when it falls out of its natural rhythm. And all the while, Neil continued his research. He developed two cancer drugs; he coached his daughter in sports. But eventually, life came crashing down again in the summer of 2009.

On Friday, July 17, 2009, then 53-year-old Neil Spector was in the ICU at the UNC Medical Center in Chapel Hill. Neil’s attending surgeon walked into the room to deliver a sober message:  “You’ll be dead by Monday unless you have a heart transplant.”

Neil chronicled his medical adventure in a book, Gone in a Heartbeat: A Physician’s Search for True Healing. The book lays bare Neil’s struggles as a Lyme patient leading to the needed heart transplant. His struggle resonated with people not just in the United States, but around the world. He became the Dr. Patient-Professor of tick infections, lecturing widely. He told his story; pushed on his colleagues to do better by patients, and carried the mantle of trying to find cures. He also taught us what it was like to be given the gift of a donated heart from someone who died.

That book connected Neil’s life and mine.

For eleven years Neil lived a frenetic life on many fronts. He rarely turned down speaking engagements. He felt driven to find a cure for Lyme disease and the most intractable stealth pathogen a tick bite can deliver, Bartonella. He lectured; he attended galas, and he conducted research. Driven is probably the word I am looking for here. Neil was driven by a love for humanity and health.

On April 18th, during this unrelenting pandemic, Neil was back in the hospital teaching us from his bed.

First, I am blessed to have so much love and support to help me through one of the most challenging times of my life. My physical, emotional and spiritual resilience was tested to its very core over the past eight weeks. There were moments when I cried out in excruciating pain asking God to put an end to the misery. Unable to eat and with 20+ pounds of fluid (1 pound =2 liters) that had accumulated from the top of my abdomen to my toes, with an abdomen so distended it felt like it would burst at any moment, I tried to remain strong day after day enduring unbearable pain and discomfort. This was not from liver, kidney or heart issues but rather blockage of lymphatic drainage. The decision was made to treat very aggressively since I was in so much discomfort. The treatment nearly killed me. I developed bacteremia in the hospital with a compromised ability to fight infections. I was treated with three IV antibiotics. And then one of the low points, was when I was readmitted to the hospital with a fever, low blood counts and spent 10 hours in the COVID isolation unit, waiting for my culture results, which were thankfully negative. What a terrible experience to be that ill, alone, unable to have Denise, the love of my life at my side, seemingly isolated from the world. Anyway, the treatment worked opening the lymphatic block and I lost every drop of extra fluid.

The last twenty years of my life have been marked by life threatening challenges. I feel like a veteran of the physical, emotional and spiritual challenges that we all face (or will face) when confronted with overwhelming obstacles. I understand how there are [no] guarantees in life. Live each day to its fullest since no one is guaranteed a tomorrow. Never think ‘it can’t get any worse than this’ because the minute you do, it will get worse. Don’t pass on telling people who mean the world to you how much you love them. You may never get another chance. Even in the darkest moments, I promise you have something to be grateful for; don’t forget that!

Finally, I have learned an important lesson. I have spent my professional career trying to save and improve the lives of others with cancer, vector borne and other diseases. Pouring my heart and soul into that work came at the price of ignoring the one person crying out for help-me. That will change.

Facebook post, April 18, 2020

Neil again beat death, leaving the hospital and posting a photo of himself outside. He was also a transplant champion as evidenced by one of the many t-shirts he would wear to encourage people to extend someone else’s life through organ donation.

Photo of Neil Spector April 2020.

By June 5, 2020, however, Neil was again writing from a hospital bed. He would impart his last lesson; this one on the Epstein-Barr virus.

Asking for your prayers as I face the greatest challenge of my life. I will receive HLA matched donor T cells to eliminate EBV infected B lymphocytes that are wreaking havoc in my my body. This cell based therapy is still investigational but from what the experts have told me, it is the best chance at moving on my life.. First infusion is today. How ironic that a stranger saved my life through a heart donation nearly 11 years ago and now a second stranger will save my live by donating their healthy T cells activated against EBV.

I’ve still got too much to do in this life!

Facebook post, June 5, 2020

Neil died on Sunday, June 14, 2020.

Displays of the enormous love people feel for Neil, and the grieving of his loss, can be seen in many places, including on the Facebook page I initially created to market his book. That page became a virtual library for the latest research on tick-borne diseases. Neil and I fielded many inquiries on that page from patients near and far. He never shied away from answering. He was generous in donating books to fundraisers. Clearly he realized on April 18th that he was burning himself out, but by then, it was too late.

While Neil Spector embodied the word champion in his fight for others, he also left a legacy–a gift by will, deriving from Latin.

Weeks before he died, Neil submitted a $3.2M grant proposal to the Bay Area Lyme Foundation. The foundation noted Dr. Spector’s “brilliant team at Duke were deep into game-changing research.” Neil saw parallels in how cancer and Lyme impact the body.

Neil will live on in that research. I pray he will continue to guide that research and continue to teach us from where ever he is right now.

Good-bye, Neil, and thank-you.

Photo of Neil Spector, MD

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