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).

28 Comments on “Neil Spector, MD

  1. Dr. Spector,

    I am apart of a Lyme Disease community and someone had mentioned your story. I’ve watched your videos and my story is too similar.

    I contracted Lyme Disease in 2005. I was born and raised in New Hampshire for 21 years, now living in Huntington Beach, California.

    5 years symptom free.

    2010- Debilitating headaches begin. Tested positive for Lyme again (we know this testing is garbage). Put on Tetracycline, and things go downhill from here.Heart palpitations, arrythmia’s, tachycardia, begin. I was put on high dose antibiotics for 3.5 years by an LLMD who basically treated me like a lab rat.

    I saw some progress in the first 6 months, and then things plateaued and just got worse. I was urinating blood for 2 years, my heart issues got worse, and things just went down hill. I got off of all antibiotics in March of 2014 and moved out to California in January of 2015, where I have lived ever since.

    Since I’ve been out here, I still have been dealing with my regular symptoms:

    -Heart Arrythmias/Bradycardia
    (episodes of actual pauses between beats. I will attach my halter results from 2 weeks ago). These have continually gotten worse over the last month, and I have another follow up with the cardiologist today.

    -Dizziness/Vertigo
    -Chattering teeth
    -Digestive issues, mainly constipation.
    -Tremors
    -Headaches
    -Numbness/Tingling
    -Muscle Twitches

    The list goes on, but I had to reach out as your story is too similar. This last year, I’ve worked as a professional fitness model featured in magazines all over the country, and now going up a flight of stairs is an issue.

    I am attaching my Holter results from 2 weeks ago. If there is anything you can do whatsoever, I would greatly appreciate any guidance, wisdom, prayers. Cardiologist thinks nothing is wrong with a heartbeat that is getting down to 30 in the night, and resting is 40. I KNOW THIS IS WRONG.

    I am committed to getting my health back and truly appreciate your time.

    Have a blessed day,

    Kyle Willis

    1. Kyle, Thank you for sharing your story and we wish you health and a successful treatment. Again, we would counsel that you try to contact Dr. Spector directly through his office at the Duke University School of Medicine (you can find contact details in the link). Should you wish to consult another physician familiar with Lyme disease, you may want to try the directory provided by the International Lyme and Associated Diseases Society (ILADS). Best wishes.

    2. We have had good results with peptide BPC-157, thymosin beta 4 and umbilical cord stem cell for Lyme related arrhythmias and heart failure. I went into heart failure due to Lyme about seven years ago, along with multi-system dysfunction. My heart is now technically normal but I would say 90% (doesn’t negatively affect my life). Studies show side-effects are essentially non-existent.

      Some peer-reviewed references:
      https://www.ncbi.nlm.nih.gov/pubmed/19465062
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3601487/
      https://www.ncbi.nlm.nih.gov/pubmed/24030419
      https://www.ncbi.nlm.nih.gov/pubmed/26094634
      https://www.ncbi.nlm.nih.gov/pubmed/24552279
      https://www.hindawi.com/journals/bmri/2015/430847/

      Good luck!

      It is a horrible scourge that is exploding. Most doctors are ill-equipped. I am speaking at the upcoming ILADS conference on this therapy.

      Oh, there is almost always an associated immune activation of coagulation, which makes the blood extremely thick and even harder to pump. I would ask your doctor to run a D-dimer (normal is 50), thrombin-anti-thrombin complex, prothrombin fragment 1 &2 and PAI. Low dose heparin can be very helpful along with lumbrokinase and nanokinase, as a start. Lots of other stuff (many many) that can be done, but everyone is different.

      Warmly,
      Kent Holtorf, M.D.

    3. I have a son who is 23, lives in La Jolla, goes to UCSD pre med, and has been sick for 5 years now with Lyme. We got IGenex tests done. He had no rash. Though Mayo Clinic said he didn’t have Lyme and that he had Fibromyalgia. His main symptoms are joint-related — can not use his wrist very much; also affects knees, feet, jaw, etc. Used to have neck and head pain. I personally was diagnosed with Babesia and have many symptoms you speak of. What has worked for me is herbal therapy. I read all of Breuner books on herbal therapy and Dr Rawls’ Unlocking Lyme. If you have not checked these yet I would.

  2. Hi there,

    My name is Kyle Willis and I am 24 years old. Have been fighting chronic Lyme disease since 2011, first diagnosed in 2005.

    I have been experiencing arrhythmia’s for 7 years, with a resting heart rate below 40 and long pauses in between beats (episodic).

    Could you please pass my information on to Dr. Spector. Need his help.

    God bless,

    Kyle Willis

  3. Is it at all possible to schedule an appointment with Dr. Spector? After years of declining health, 20+ doctors visits with countless tests revealing no abnormalities, I was swiftly dismissed. With 6 Lyme tests in which all were negative, I finally had the test performed at IGeneX which was positive. I’ve been under the care of a Lyme Literate Physician (second one) but now have Lyme carditis and have been informed there is nothing we can do but “keep symptoms at bay” with herb treatment. Sadly, the herbs I was prescribed are not providing relief and each day the heart pain increases with shortness of breath. I’m very concerned and at this point wondering if I need to simply plan my funeral as I’ve navigated every course possible. If Dr. Spector has any insight or suggestions, I would be most honored to listen. Having to express to my child, husband and family that we need to plan for death is not comforting but I feel there is no other choice at this juncture.

    1. We are so sorry to hear of your suffering and have great empathy. We hope that you will keep fighting. Unfortunately Dr. Spector’s clinical focus is on cancer treatment, not Lyme disease. But there are other Lyme specialists who may be able to help. You may want to consider reaching out to other LLMDs in your area for more advice. ILADS (International Lyme and Associated Diseases Society) maintains a directory of care providers, searchable by geography and might be a good place to start. There are so many patients who have had to fight through years of difficult struggle with this disease but made it through to the other side eventually, sometimes without ever knowing what led to the eventual breakthrough (some have even shared their stories here). Never give up hope. It is a very frustrating, painful, and debilitating illness.

    2. Look into Dr. Bill Rawls who also had Lyme and beat it. He and Dr. Spector have been interviewed together. Don’t give up!

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

  5. 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.

  6. 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.

  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. 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.

  9. 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!

  10. 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.

  11. 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.

  12. 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.

  13. 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.

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