Dr. Neil Spector, MD, one of the country’s top oncologists and a cancer researcher at Duke University School of Medicine, describes his painful near-death experience with Lyme disease in the recently published memoir Gone in A Heartbeat: A Physician’s Search for True Healing (2015). He speaks with candor and a unique perspective as a medical professional struggling to be heard by his own doctors. Uncertain when he was infected, Dr. Spector first began having health issues, including arrhythmia and arthritis pain, in the early 1990s, but despite being native to a highly endemic area for Lyme, it took many more years to have a positive diagnosis for the disease. The diagnosis was confirmed in 1997 and Dr. Spector received three months of intravenous antibiotics but was left with a severely weakened heart.  It took almost 12 more years until he received a life-saving heart transplant for Dr. Spector to begin restoring his health and the damage done to his body by the parasite.

Check out this interview on the Duke University School of Medicine blog where he describes his experience and some words of wisdom acquired along the way.

You can find Dr. Spector’s book, Gone in a Heartbeat here. In this July 2015 interview with Diane Rehm (and Bay Area Lyme Foundation researcher Dr. John Aucott) on The Diane Rehm Show, he explains his motives for writing the book:

“I wanted to write my book, one, because I realized that there were other people out there who are suffering, and there’s a lot more that we don’t know than we know about this disease and that there are people who don’t fit the classic mold of a bull’s-eye rash and a tick bite and that I’m an example of somebody who is a physician scientist who was dismissed as being stressed when in fact I had a serious, life-threatening infection that almost took my life.”

Listen here for the full discussion with Drs. Aucott, Spector, Sunil Sood (Southside Hospital North Shore LI Pediatrics), and Paul Roepe (co-director for the Center for Infectious Disease at Georgetown University).

17 Comments on “Neil Spector, MD

  1. God bless you. Thank you for sharing your story,. I just got diagnosed with Lyme disease myself and it’s just awful. I am searching for others who have gone through and are going through it. Thank you again for sharing. I am going to listen to your story too.

    1. Facebook is very helpful. There is a group of about 1,000 savvy Lyme and mold disease solutions called: Redox: biotoxins, cellular toxicity, and impaired immune function. Feel free to Facebook friend me. Also, I used to work with a big Lyme doctor and am a survivor.

  2. Thank you for helping spread the word. I just got a response from Senator Feinstein’s office describing severe cases of Lyme disease as being “like arthritis with severe joint pain.” I’m sending this link back to their office. They just don’t get it.

  3. Everything makes sense. Most of my family is in some aspect of medicine but know little of chronic Lyme. I’ve suffered for many years and wanted to disbelieve myself until Western Blot test proved true. Unfortunately, I’m still too broke to effectively treat. Yes… I’m one without insurance. Your story on NPR inspired new found hope for me though.

    1. Even if you had insurance, very little of the expense, if any, is covered. The few MDs who understand this disease are in Integrative Medicine which insurance does not cover.

      Believe me, I am paying out-of-pocket for my son, a 28-year-old with a degree in Physics (Math minor) who is substantially in debt, having seen many MDs over the course of the last seven (7) years trying to figure this out. He was finally diagnosed in October 2015 by an Integrative Medicine MD. Watching an educated, athletic kid, especially your own, who competed nationally in IronMan races and held employment as an engineer transition to a sedentary lifestyle and unemployment is very hard.

      And, the illogical side of this story is that my son visited the Duke Medical Center approximately September 2015 (multi-disciplinary clinic, I believe) given guidance from my cousin, a retired cardiologist. My son was sent away with the diagnosis that “nothing is wrong with you!” With the publicity surrounding Dr. Spector’s experience, I would think that the Duke physician community would be more in tune with Lyme disease.

  4. Please help! I am in medical school, and I think I’ve had this since 2011. I am currently in my 3rd year…I should have graduated by now, but I’ve had to take medical leave on multiple occasions. Been on multiple courses of steroids and on TNF alpha drugs since 2012. I understand that this has made things worse. Would love to speak to Dr. Spector for help and guidance. Thank you.

    1. We are sorry to hear about your difficulties. We would recommend that you contact a physician familiar with Lyme disease to discuss your case. You can find your way to local physician referrals here. And you may want to prepare for your visit with some of the tips on this page about talking with your doctor.

      Dr. Spector is a cancer specialist and does not regularly treat patients with Lyme though he has suffered personally as he shares in his book, Gone in a Heartbeat (2015), and has become an important advocate for the Lyme community.

    2. Jeffrey, Facebook groups on Lyme help a lot. I am involved with Redox: biotoxins, cellular toxicity, and impaired immune function. I am a member there. Redox signaling molecules drink is a major help as it repairs the cellular damage from the bugs, it also signals to kill the bugs, signals to detox. The main help for me has been the repair. I have my brain again, better than it has been in over 2 decades. Also feel free to Facebook Friend me [Janette Warren]. I used to work with Dr Klinghardt, a big Lyme doctor, so I have a lot of info, and I too, was very ill and am not in the “dis-ease” … but have to stay with it, especially using the redox.

  5. I also ‘had Lyme,’ plus Babesiosis – at the time (1997) living in East Haddam, CT (5 mins from Lyme, CT!). Went for years before being Dxd then moved to SF area. New doctor but from E Coast. Dx then with Encephalopathy +DSD; put on IV for 1 month short of a year + 1/2 (Biaxin). Nothing covered at the time by Med Insurance. Age 65 think remission – while at the same time all-encompassing trauma — total loss of all financial stability and suddenly on Medical and SS Disability. [Trying to keep this short isn’t easy!] Ten years now since so I am now 75 and three years ago Dxd with RA! But ‘it’ felt like LYME D all over again.. However, was put on steroids, then Methotrexate, and felt surely I would die — just got worse and worse and could do nothing + wanted to do nothing but sleep! Nine months ago I decided I’d had enuf as the next step was to put me on IV biologic. I stopped all of the RXs and switched to almost Vegan Diet. I take Tumeric/Curcumin and eat lots of potatoes in my salads, no dairy, no fish, no meat no sugar. I’m doing just ‘great’ now… Have had to have one injection cortisone for left hand swelling + pain, but that was nearly six months ago. Meditation + Classical Music + Painting is my homegrown RX and how thrilled I am to be able to share this happy story!

  6. My 36-year-old daughter was just diagnosed after years living with Lyme and negative tests. She has been on the IV antibiotic but it does not seem to be working – what do you do??? She is a young mom and unable to participate in life! She goes from dr to dr and they pay thousands out of pocket expenses. This is one of the worse insidious conditions that I have ever seen. Is there a doctor that knows anything ????? We are in NJ.

    1. Hi Sandra, So sorry to hear about your daughter and the frustrating experience she’s been having. Sounds like the best course might be to get her to see a doctor well versed with Lyme disease. ILADS has a national directory of physicians familiar with Lyme that is searchable by region and would be the first place we would recommend you start (follow the link provided here). We also recommend that you try to document all symptoms (when occurred, severity, duration, etc.) to share with your doctor(s) as this will help them diagnose. Will hope you find successful treatment soon. Best wishes.

  7. I am pretty sure I have Lyme disease as well. I have all the symptoms other than the rash. I just had blood work done for Lyme disease but they say it is negative. I just want my life back as its been almost 8 years now since I became sick.

  8. Dr Specter in his book speaks fondly of the of his old precious heart…..

    “And I grieved for the loss of my old precious heart,”

    And later,

    “As my old heart, and the treasure chest of emotional experiences it contained, was carried away, so went the source for my poetry.”

    BUT, is there any cite or comments as to pathological analysis, etc. of the “OLD HEART” that could/might have helped later medical research?

    1. Will, Thank you for your thoughtful comment. We appreciate your interest and concern. Of course, however, Dr. Spector’s health and heart are personal and private issues.

  9. Hi, I have been diagnosed with multiple sclerosis for 10 years, only to be told in the past three years, it is probably not MS, though they are not sure where the abnormalities on my MRI are from. My key issue is trigeminal neuralgia it controls much of my life. I owned a pharmacy and loved being a pharmacist but due to cognitive issues have had to stop. I want my life back. I have had blood work done that was negative for Lyme. I also had two months of doxy anyway. I now have had bloodwork in a lab in California that seems questionably positive. I am very skeptical as my family physician believes Lyme does not exist. So I want to choose an ID doctor carefully. I would greatly appreciate if Dr Spector could recommend a physician in the Raleigh area that would be open minded and trustworthy. Thank you.

  10. I have Lyme Carditis and am very scared. I am currently under Dr. Harris’s care via his practitioner. Can I participate in research?

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