Lyme and Reason: Dr. Neil Spector

My whole life it was either that or a politician. So I decided that I didn't really want to go to law school, so I decided to go to medical school. No, I've always been exposed. My family, my father was in research, my mother was a psychologist. So I've always grown up around research in medicine. Yeah, it's been a long passion of mine.

I think I wanted to really make a difference in people's lives. I wanted to, you know, when I went to college I realized that medicine, this may sound like a cliche, but it really is the most noble profession despite all that's happening in medicine. You know, they're still dealing with the same life and death issues. And so you get to know somebody in a way that you could never get to know them by being a lawyer.

It's all the difference in the world. I mean, the doctor-patient relationship is all important. You know, despite, you know, and I have a laboratory and I'm involved in precision medicine, if a person doesn't buy into their care and doesn't feel like they have an active role and doesn't feel like as a physician I'm listening to them, number one, they're not going to be compliant with any of the treatments, or they're less likely to be compliant, and they're going to have a lousy outcome. So you can't rely on, I think we've become so virtual medicine oriented and test oriented that we've forgotten that basic element of human to human contact is all important. I mean, having a doctor hug you is therapeutic. Yeah, so you know, but we've forgotten that. And so yeah, no, I think that especially for Lyme disease, a disease where people often feel very isolated, isolated from the healthcare community who may not believe that they're sick, often sadly isolated from their own families who believe it's all in their head, you know, I understand from a personal level, so it gives me sort of that street credibility that I understand what people are going through.

So I went from being this incredible model of health. I mean, I ran Boston marathons, I used to run 10 miles a day six days a week. I did everything right. I mean, I didn't smoke, I had my glass of red wine every once in a while, which is good for you. So you know, and I wore the white coat, I figured I was immune to getting sick, right? I mean, I took care of people, not the other way around. So I got bit by a tick and never saw the tick, just to literally within a span of months to barely being able to walk 20 yards without having to stop for extreme fatigue. So I knew something was wrong. And I was having arrhythmia, so my heart would start racing upwards of 100, 200, 180 beats a minute when the normal heart rate is probably 70, for no reason at all. And as a physician, I knew this is not normal, there's something wrong. And yet every time I'd go to the doctor, they would run a slew of tests, never Lyme disease tests, and say we can't find anything wrong with you. The arrhythmias are very transient. I make the analogy, it's like when you bring your car into the mechanic and you say to the mechanic, oh, there's this noise, it's binging over here, and then the mechanic drives it and of course the noise is gone, right? And they look at you like there's nothing wrong with your car.

I was going to the medical school that I was working at. And I had very compassionate physicians, I mean, don't get me wrong. But because they were so focused on the tests, and my blood counts were normal and my chemistries were normal, and again by the time I would be seeing my EKG, the tracing of my heart rhythm would be normal, and they'd say you're stressed, right? You're trying to write a grant, you're writing grants for your lab, you're seeing very sick patients, bone marrow transplant patients at the time, my wife and I were trying to start a family which was very frustrating and challenging. I had never experienced the sorts of symptoms I was experiencing back from 1993 through 1997, so for four years I went misdiagnosed as having a stress disorder. People told me do biofeedback, do meditation. I did all those things, they were great, but it didn't change. I was still incredibly fatigued. I had such strange symptoms that I don't think my doctors knew what to think about it. I had this burning sensation in my feet that was so bad that I had to prop my feet off the bed because otherwise it was like a searing burning sensation. I'd have these night terrors, I mean, not just nightmares, they were just horrendous sweats.

So what happened was after four years, and literally I knew I was dying. I mean, I really knew that I was going to die.

No, I knew I was dying. I knew if I was a physician taking care of me, someone like me, I would have been preparing the family that this person is, look at them, they've lost weight. And by the way, I was still working every day. I developed what I think that's really when the light bulb went on. I developed arthritis, I mean really severe, like I could barely hold things in my hands, my wrists, my arms, and swollen joints, it wasn't just pain, there were swollen joints. And I was given an antibiotic for a completely independent reason, not for the arthritis. The antibiotic turned out to be doxycycline, which is the antibiotic that's given for people with Lyme disease, and my arthritis within 24 hours completely resolved, I mean went away 100%. And it was around the same time that I developed again a telltale sign of Lyme disease, what they call third degree heart block, which is not an actual blockage in the blood vessels, but it's a blockage in the wiring system. So I had a heart rate of about 40, and I knew that wasn't normal. That might be fine for a marathon runner, but I hadn't run in five years, right? So I went to the doctor, and I'll never forget, I was laying on the table, they were doing the EKG tracing, and as it's coming off, now they have very smart machines that actually give you the diagnosis, you don't even need a cardiologist. So I'm looking over at the tracing and it says complete heart block, third degree heart block. And my first reaction was that can't be me, that must be the person whose tracing was stored on mine, because as sick as I was, I just, you know, that can't be me. But it was me. And that was the moment when I put it all together. I said, look, I've lived in an endemic area, I've had extreme fatigue, I've had and now have third degree heart block, and I've had these arrhythmias for the preceding four years. And those arrhythmias by the way were finally captured on a monitor that I wore for 72 hours, and it turns out that they were a potentially fatal arrhythmia called ventricular tachycardia, which is one of the most common causes of sudden death among young people. So I had had thousands of episodes over the preceding years, any one of which could have easily killed me. I mean, it was amazing that I was still alive. It was a miracle I was still alive. In fact, the tracing, my heart tracings went up in the cardiology fellow's office as a learning example of how someone could be alive. And so I put all of that together and I told my doctors, I have Lyme disease. And even with that, they sort of said, well, I don't know. I was at the University of Miami at the time, and in Florida they didn't, I mean, Lyme disease was like 50 out of 100 on their list of diagnoses. And so we sent the labs off, and a few days later I got a call from my cardiologist saying your test is negative. Now, when most people, when a doctor calls and says your test is negative for Lyme disease, you figure okay, the test is negative, this doctor's educated, the test is negative, right? We'll move on to the next thing. Okay, maybe it wasn't Lyme disease. Maybe I have all the signs and symptoms, but because of the law that we can discuss as to why that's a problem, and why many people are falling through the cracks because of this dogmatic rules that have been established for reasons as a scientist that are beyond me. But anyway, so they put a permanent pacemaker, and then I had an episode of prolonged ventricular tachycardia, so they had to put a defibrillator in. So I essentially had a 911 unit in my chest that would shock me if I had a potentially fatal arrhythmia, which I had several shocks along the way.

So I lived 12 years. So I finally was diagnosed, I forced my doctors to repeat the test, they did, and it came back positive. But by that time, the damage had been done. I had 10% heart function, but living a very active life. And then in June of 2009, there were several episodes and I just went downhill very quickly. I went into florid heart failure over a span of literally 10 days. I looked like I was six months pregnant with all the fluid accumulating in my body. And it became very clear that I wasn't going to live. I was told by a surgeon that I had 72 hours to live on a Friday afternoon, July 17th, that I would be dead by Monday without a heart transplant.

Yes. I don't blame my doctors. People ask me, do you blame your doctors? I don't really blame my doctors. I blame the people that have created a dogmatic approach that influences doctors as to how they treat patients. I mean, we've lost the art of medicine. So I had all the signs and symptoms, and we have a saying in medicine, if it quacks and it waddles, it's a duck, not a zebra. I mean, I was quacking and waddling saying Lyme disease, Lyme disease. And yet because of the way Lyme disease is diagnosed in this country and around the world, I was diagnosed as having a stress disorder. And I think that's happening to millions of people, you know, down and falling through the cracks.

Yeah, I think it's very difficult when you're really sick to, you could say well you're a physician, you're a scientist, why didn't you think about this? But when you're really sick, often it's hard to think clearly. And when you have multiple doctors telling you there's nothing wrong with you, there's nothing wrong with you, it's stress, there is a part of you that starts to wonder, well maybe there isn't really anything wrong with me. I mean, thankfully that was fleeting, but you start to think, you know, these tests, and again no one really looked at Lyme disease early on. But you start to question, well maybe I'm working too much and maybe there's other things going on.

Yes, no, it would be. So I think the problem, I think there are areas in the country that are more aware now. I think one of the problems, to be honest with you, is if you live, and it's bad enough in the Northeast and in the metropolitan area in the places where we know that Lyme disease and the co-infections, so remember it's not just Lyme disease, it's the other five things you get from a tick bite where we know they're more endemic, so there is I think more awareness, although it's not where it needs to be. The problem, and I think my situation exemplifies that, is when you're outside that area and develop symptoms, so again I was in Florida, and I don't even think it crossed anyone's mind about Lyme disease. Or if you're in North Carolina, you know, it should be. Look, if you're in the metropolitan area and you go to the Hamptons and you come back and all of a sudden you're incredibly fatigued and having headaches and arrhythmia, I mean Lyme disease should be right there. Or if you're in Cape Cod, it should be. One of the problems is that physicians often have been indoctrinated by, I'll just put it in quotes, the existing science around Lyme disease, which gives them a false sense of security in often misdiagnosing this.

I think one reason is there's this perception that's been communicated to the highest levels in Washington and to the funding agencies that this is a disease that's easy to diagnose and easy to treat. And so if you're making decisions about priorities, if that's the perception given to you by some of the top academic infectious disease people, you know, from the CDC, then you're not going to put money into it. There's really lack of good effective therapies and funding. Breast cancer, where there are strong advocates, and you know, do breast cancer research, there needs to be more money in it, right? But those are diseases that we recognize are problematic and need to be addressed with funding. There's no sense of urgency because the message coming up is this isn't a problem. And unfortunately, the voices of advocates and real world people and physicians who are out in the community treating folks is being dismissed as crazy lunatics, people who are just complaining. That's sort of this fringe of people who are suffering, you know, everyone else is fine.

Yeah, no, I'm not saying that. No, but I'm still saying like, and you're one person who chronicled your journey in a book, right? It nearly killed you. I wonder how many other people it has nearly killed, or how many people it has physically killed, and how many families it's ruined, and how many lives it's destroyed just based on the fact that it has been misdiagnosed when there is a treatment available, right? So we know that people have died even officially. The Centers for Disease Control put out a report of three young people who died of sudden death probably from cardiac arrhythmias who had undiagnosed Lyme disease. And one of the individuals, I mean, she had symptoms, she went to the doctor, the doctor's reaction is well you're stressed, you're anxious, whatever. And then she ended up dying, and they found the Lyme disease, the bacteria causing Lyme disease, when they were inspecting the hearts to donate for transplant. So we know even the government has documentation that people have died. Now that is really the tip of the tip of the iceberg. If you ask anyone who has connections with people in the Lyme disease world, we know that people are dying all the time. We know that people are committing suicide. There's a very high rate of suicide among people suffering from chronic Lyme disease. So this is a devastating illness, but it's not perceived that way. I mean, so one of my missions that I feel through the book is to say, look, I'm not on the lunatic fringe. I'm not a quack. I've been in academics all my life, I've developed two cancer drugs, I published in the best journals. And so if this is happening to me, I feel obligated, I need to be out there saying we need more research, we need more awareness. The state of care for people right now is woefully in big need. It's bad. I mean, I'll be honest, it's bad. The testing is lousy, the treatments, in cancer we are light years ahead of where we are in Lyme disease. That's largely thanks to funding for cancer research.

So I'd say one, if you specifically for Lyme disease or if you suspect you have Lyme disease, I would ask your doctor what that test result means. So if your doctor says well your test is negative, don't accept that at face value because again negative doesn't mean negative in the terms that lay people think. So I would say what does that mean? I want to see the test. And what do I have then? I mean, so what is going on with me? Don't accept just a blanket statement. Physicians are human like everybody else. You have to be your own advocate for your healthcare. And I think when it comes to your gut instincts, look, I've lived in an area where Lyme disease is prevalent, I have the signs and symptoms, I can overlay them with the classic Lyme disease symptoms. I'm not going to stop until I find this answer. Be tenacious. And if you don't like what you're hearing, go to another doctor. Don't worry about insulting your doctor. Go to another doctor, get the answers. It's your life and your life is potentially at risk.

I would say listen to the patient. Your job as a doctor is not just to interpret tests from some lab. You're supposed to understand that person. You're supposed to be able to think out of the box. And so be open-minded, don't be dogmatic. Question, question, question. If we all just made diagnosis based on some recommendation perhaps from an agency that doesn't even see patients, then healthcare would be in a pretty bad state. So as a physician, if you suspect and if your patient comes to you and is telling you I think I have Lyme disease, doesn't mean everyone who comes in has Lyme disease. I'm not somebody who sees Lyme disease everywhere in the world. But I think you have to have it on your radar. And you have to get rid of the myths. You know, the classic teaching is you're looking for the target rash. It doesn't happen that way all the time. In fact, it happens more that you don't see a rash, or you see a rash that doesn't even look like that. Or what if you have a rash in your scalp? Who's going to see that? Most people don't even remember getting bitten by a tick. So you have to put these myths out of your mind that this is what Lyme disease is, all the little bullet points: nice rash, got bit by a tick, flu-like illness at the wrong time of the year. Those things don't happen that way in the real world. So I tell physicians, think out of the box, use your skills, use your judgment, and use the test to hopefully confirm what you think is going on, but don't use them as the ultimate Holy Grail.

Well, I think the time is changing now, to be honest with you. I think there is a tide that is coming in that's going to be hard to reverse. So I think what's going to lead to that, so look at what's happened in cancer. A high percentage of people with metastatic lung cancer used to be a death sentence, 6-9 months. Now there are people years out who I'd like to think are potentially cured. Metastatic melanoma, get your affairs in order, 5-10 years ago. Now there are people being cured. If we could cure those diseases, we can cure Lyme disease. I mean, I refuse to believe that we have to allow people to suffer. So what we need, and what is happening, is we're going to bring people who are not necessarily Lyme disease researchers, but bring people in from immunology, bring people in from cancer research where the technology is much more advanced. That's going to change. There will be better diagnostics. People who were never involved in Lyme disease research are now seeing there's a huge need and are developing diagnostics that are better than the current diagnostics. So things are going to change. We may have to drag some people kicking and screaming, and we may just have to leave a generation of physicians out of the loop. But things will change. I feel fairly confident that I can almost promise you that.

I feel very confident that things will be changing.

So I'll tell you one story, it's in the book. After the transplant, my daughter decided we needed to name the heart. I mean, we couldn't just say your new heart. So she decided to name the heart Heavenly Precious. And so I wrote that in the letter to the family. The letter was heavily censored, you couldn't say who you are. Sadly, there's been some incidences where people have said I didn't want that person getting my loved one's heart, so there has to be this exchange before you can openly contact the family. So I wrote that in the letter, that this was so meaningful and such an amazing gift of life that we named the heart Heavenly Precious. And so when I finally met the family, the husband told me that he had put that letter in a frame by his bedside, and he felt that that was his wife's way of communicating to him that everything was okay.

No, well, I don't think so. Look, I'm a scientist, I believe in rigorous, prove it to me. But I also believe that we don't know a lot of things in this universe, and that's one of them. And I'll tell you another story just about the heart, because people ask me about this, what's changed in my life and how I'm doing today. So it's changes that when I finally was discharged from the hospital, I started watching House Hunters International. And I used to be an avid basketball fan, I gave up basketball tickets to watch House Hunters International shows on HGTV. So I don't know whether that was Vicki or the fact that I love dark chocolate now, which I never loved before. That's Vicky. But I'm doing great today. I am back to running. I'm not running full marathons, but I ran three half marathons last year. I run pretty avidly. So I feel fantastic.

Well, I'm older than I was when I was last 100%. And I still take medications to prevent organ rejection. But thankfully, I feel wonderful.

Thank you.