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).

48 Comments on “Neil Spector, MD

  1. My whole life has been infected with Lyme. Literally. My mother got bit when she was 5 and it was passed in utero I believe. I am now 28 and after insisting my MD do a more thorough test, results came back and I only have 1 band in IgG and 1band in IgM. I do not “qualify for a Lyme diagnosis. I have 3 young girls, in a divorce and in school so my medical coverage won’t cover testing for co-infections. I have heart palpitations, high ana factor, brain fog, chronic fatigue, ect. I’m comfortable with the idea of death most days. I’ve discovered survival for 28 years though and would like to get better.

  2. As a child, I spent a lot of time outside in central Alabama, where deer ticks are very common. Around age 7, I developed a bullseye-like rash on my armpit, a distinctive red ring with a white center. My mom kept an eye on it, but when it went away after a week or two, she didn’t think about it again. She became a home healthcare worker later in life and had a client who got Lyme disease as a child but wasn’t diagnosed until her 60s, and she had major neurological and joint problems because of it. My mom, thinking back on the various health issues I’ve had (diagnosed with arthrits at 15, a sinus arrhythmia at 26, and problems with nerve pain much like fibromyalgia), recommended I get tested for Lyme disease. My question is this: how do I ago about getting tested? What do I do if my doctor or insurance won’t cooperate since I don’t currently have any Lyme disease-like symptoms? Thanks for the advice!

  3. Hello,

    Thank you for this informative page. I’m a 40-year-old woman from Europe. I was diagnosed with Lyme in 2006. I had a rash and got antibiotics but only after months since I didn’t know what the rash was and was also travelling at that time. I have headaches every now and then. Last year, I had a headache so strong that I had to go to a hospital and they did a lumbar puncture. After that the headache got worse and I couldn’t walk for three weeks.

    I have allergic asthma and get infections (sinusitis, bronchitis) all the time. My stomach does not work and recently I have gained weight in only about 6 months (7kg). The worst, however, is the neurological pain. My feet and hands are tingling all the time and I can’t sleep anymore. Due to this pain, I was sure I had HIV. I’ve been tested for almost every virus and many bacteria since my doctors told me, you got the antibiotics and only the longtime antibodies can be found in your blood. It is not Lyme. I also have brain fog – and it’s only getting worse – when writing something- I suddenly realise that I can’t remember how the word is spelled.

    After 2006 when I got the antibiotics, I was feeling ok and since I got married I also wanted to have children. Now, my health is much worse and I just recently saw a presentation by an American Lyme specialist who said that Lyme can be transmitted to a baby during a pregnancy. I’m so afraid… my children. They are doing well at the moment but my older son also has some weird headaches.

    I’ve been to many, many doctors but at the moment my situation is helpless. As the one woman – I can’t remember her name, in the one story on this page, I have to work. The only specialist I’ve found lives in another country and has not been able to help me with the neurological pain. Not even Lyrica helps. I took a very low dose and had a feeling as if I would be leaving my body and holding my head. I read Dr. Rawls book. It’s a great book. Unfortunately, I couldn’t order his package to Europe but I tried to buy the herbs via Amazon and European pharmacies.

    I won’t give up. I’d like to come to America since I get the impression that American Lyme specialists know more about Lyme. Also already in 2012 my Elisa c6 test was a strong positive and my cd57 count only 26 (the minimum normal level is 100).

    Can you recommend me a doctor? Can someone recommend me something for the neurological pain? I take Pycnogenol, Chlorella, Sarsaparilla, Cats claw…

    Thank you in advance. I wish you all the best.

    Katja

    1. Katja, unfortunately Bay Area Lyme Foundation is not a clinical organization so can not offer you prescriptive advice however we can point you to the International Lyme and Associated Diseases Society provider referral service. Their directory does cover many international locations and may be able to help you find a knowledgeable care provider in your area. You are right to keep fighting for appropriate care. It is frustrating that there still is so little understanding around these tick-borne diseases like Lyme. We wish you the very best.

    2. Check out the St George klinik in Germany, they have been curing Lyme. My sister-in-law just got back from there after having Lyme for 20 years.

  4. I was recently reinfected with Lyme this past July 2018. My doctor started with antibiotics which was a failure in my opinion (28 days) – and I followed that with some of the top herbal protocols. Immediately after the antibiotics treatment – I began working with Kambo on myself ( I have worked with it on others for several years now) – and did several treatments in a row. This made a HUGE change in my fight against this horrible disease – I quickly felt a major improvement. This is an indigenous medicine of the amazon jungle – using a (ethically harvested) secretion that comes off the back of the Kambo frog – also known as the Giant Monkey Tree Frog. I have now been trained as an Advanced Practitioner using Kambo and living and working in and around the Bay area. If you would like to learn more….below is a link to my website – as well as an article/interview with my mentor. This has been the one of the most important parts of my healing journey and I hope to help others in the same way. Please feel free to reach out thru my site with any questions.
    http://www.KamboReset.com
    reset.me/story/kambo-natures-vaccine-for-the-mind-and-body/

  5. As the debate continues about the effects of medical marijuana on multiple sclerosis (MS) and other diseases, cannabis company GB Sciences and Louisiana State University (LSU) have agreed on a cannabinoid research and development project.

  6. Why don’t we align ourselves with the major health insurance companies? Sounds a bit ludicrous, but my insurance company has spent hundreds of thousands of dollars over my 18 years of trying to figure out this whole mess of Lyme and 2 co-infections. It would seem the insurance companies would save billions by quality testing at the first hint of Lyme symptoms. How great would that be? Rule it out in the beginning. Win/Win for patient and the major insurers. The reality is that the insurance companies, in their efforts to not treat Lyme based upon CDC and IDSA, have been hoodwinked into buying into other diagnoses that drain their reserves. Is anyone able to get to these insurance executives to save them a lot of money and pain and suffering for thousands? I know this is out of the box but I believe this is the reality of the situation.

    1. At Bay Area Lyme, we always recommend you speak with your clinician or care provider to determine a course of action but IGeneX is one of the most reputable and publicly accessible labs in the nation testing for Lyme and tick-borne illnesses. Best wishes.

  7. Hi. My name is Cindy. I was bit by a tick when I was 14 years old. I am now 29 years old and barely got diagnosed 7 months ago. I’ve been having heart arrhythmias for years and last week I went to the hospital for a heart rate of 225 and was given results of a possible septal infarct. This happened two years ago as well. I need help finding a cardiologist that deals with Lyme disease. If able to help let me know. Thanks!

  8. 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.

  9. 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

  10. 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!

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

  12. 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.

    1. Jennifer, I know this thread is older, but I ran across your post in my infinite search to “get back my life”. I am a pharmacist also, have been very sick after a bite I could not view well on back of neck. Total immune system breakdown. Completely “lost in the system” attempting to “get well” or “not die” — depending on the day. Integrative care and now just “holding on”. The parallel in our Lyme journeys and our professions made me want to reach out to you. I hope this finds you — and finds you better than when you posted.God Bless us all!

  13. 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.

  14. 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.

    1. You have to send your bloodwork to a clinic in California or Germany. They are the only two clinics that truly check to see if you have Lyme or any co infections. Find a Lyme literate doctor through ILADS, and they will send your blood test to the right place. Just make sure they send it to California or Germany. It’s not covered by insurance, and my test in Germany cost $600. But it was worth it to know the truth.

      Unfortunately I have yet to find a doctor that actually has a cure. I’m meeting with a chiropractor that had Lyme for 12 years and treated himself. He is now Lyme free. I live in Minnesota. So try to find someone who had Lyme and figured out how to treat it to the point of complete healing. Good luck. I know that lyme has ruined my life. I had it 5 years ago and was finally correctly diagnosed 4 months ago. Antibiotics are useless this late in the game. They only work if you caught the disease right away. So don’t waste your time or money on them. I’m not sure where you live, but if you contact Dr. Irestone in MN, he may be able to tell you what his treatments are. After so many “fakers,” claiming they know how to cure Lyme, I’m skeptical but after 5 years I’m also desperate to get my life back. So I just pray that this doctor truly knows what it takes to kill all of this off.

  15. 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.

    2. Any type of antibiotics are pointless this late in the game. They only work if you catch Lyme immediately. I’ve contacted a chiropractor that had Lyme for 12 years and found a way to rid himself of Lyme and co infections for good. Make sure you are meeting with a doctor that is recommended by ILADS. I’m in MN, and am skeptical after all of the doctors out there pretending to know how to kill all of this off. But I’m also hopeful with this new doctor as he has suffered through Lyme and found a way to beat it. Read the book from Bill Rawls. It’s encouraging and had Lyme himself. I bought his slew of vitamins and herbs. I haven’t noticed a change yet, which is why I’m moving on to a doctor for a new type of treatment that isn’t well known.

  16. 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!

  17. 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.

  18. 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.

  19. 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.

    1. That’s such a dangerous misconception of how Lyme affects people! I personally have Lyme/ Bartonella which presents with many neurological symptoms. Lyme is reaching epidemic levels and way too many people are suffering due to bad testing and plain old ignorance! The conspiracist in me says more money can be made on the backs of these suffering people. Shameful. Signed, Mad in Maine

  20. 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. I have Lyme and currently getting much worse. What started out as swollen left knee in Aug. of this year has now progressed to numbness and tingling in my legs, dull pain in lower back. Any help you can provide in form of good literate doctors, I would be most thankful.

    3. I think my husband has it. He has been like this for a couple of years. All he wants to do when he’s home is sleep. He goes to work but when he comes home, he sleeps. All his joints hurt, he walks really stiff-like and he is hoarse and he has a very low voice. Does this sound like Lyme disease to you?

Leave a Comment

Your email address will not be published. Required fields are marked *