What It’s Like to Have Severe Lyme Disease

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In the ‘70s, a cluster of adults and children in Lyme, Old Lyme, and East Haddam, Connecticut, began to develop fevers, swollen joints, and, most mysterious, an angry rash, especially after playing or hiking near rivers. The cases were most prevalent in deer-heavy areas, and scientists quickly discovered a common link: black-legged ticks that jump from deer to humans. Lyme disease was first identified by a medical entomologist in 1982.

Though recovery is usually speedy if you’re promptly treated with antibiotics, Lyme disease is a notoriously slippery condition to diagnose, especially outside the Midwest or Northeast, where it’s most common. Symptoms can mimic the flu and may not appear until about three weeks after infection, when it’s harder to detect (and, like syphilis in the 19th century, Lyme disease is known as “the great imitator” because its symptoms could be attributed to a number of illnesses). Fewer than 50 percent of Lyme disease patients can even recall a tick bite or a rash, so thorough questioning is vital when a doctor is making a diagnosis. Left untreated, the disease can travel to your heart, joints, and nervous system.  

Now it’s on the rise, possibly as a result of global warming and “suburbanization.” New Hampshire currently has the highest incidence of the disease per 100,000 people, with 1,700 cases last year.

Dr. Neil Spector, a 58-year-old associate professor of medicine at Duke University, spoke with Science of Us about his long-undiagnosed Lyme disease, which resulted in a series of medical scares that culminated in complete heart failure.

Where are you from?
If I had to describe an idyllic childhood, that was mine. I grew up in Maryland and northern New Jersey. My father was a scientist at the National Institutes of Health. We had a very close relationship and I always wanted to be like him. My mom was equally amazing: a psychologist and family therapist and a Mother for Peace during the Vietnam War. She opened the first shelter for battered women in New Jersey. I got both sides from my parents: scientific curiosity and empathy for people.

What were you like when you were a kid?
I loved school and I excelled at it. Everything went smoothly — I played soccer, lacrosse, and tennis. Later, I started running religiously. I got into the college and the medical school I wanted to go to. But at the back of my head, I was always thinking, Things can’t always turn out perfectly.

What was your career like when you first became a doctor?
When I graduated, I did a residency in internal medicine and then I did a fellowship in medical oncology and hematology. Then I became a medical oncologist, where I specialized in bone-marrow transplantation for people with leukemias and lymphomas.

Back when I was a resident, there were no restrictions on the number of hours you spend in the hospital. We used to do 36 to 48 hour shifts. I can remember falling asleep on patients’ beds and waking to see their petrified faces staring back. They didn’t want to move for fear of waking me. You sort of become numb after a while, no matter how compassionate a person you are. I remember one time a woman came in with probable end stage liver disease. I was genuinely upset because I had been awake for 24 hours and I thought I had a chance at getting some sleep. She ruined it. And then I saw her 10-year-old daughter waiting alone for her, since there was no social worker that time of night. I remembered, God, she’s not just an alcoholic disaster with self-inflicted medical problems. She’s a human being. How far have I come from being the compassionate, caring physician I prided myself to be? I just saw somebody who took away my opportunity to get some sleep.

Did you witness many cardiac incidents when you were a young doctor?
There was a 17-year-old girl. She’d been perfectly healthy and then developed what turned out to be fatal arrhythmias. I vividly remember the terror in her eyes as we tried to save her life. When she died, one of the cardiology fellows, that sort of all-knowing strong figure you admire, put his head down and wept because we were completely helpless.

It was my job to tell the family. One minute this teenage girl is completely healthy and the next, she’s dead in a hospital. The scene was horrific: People falling on the floor, hysterical. The mother was wailing uncontrollably saying she had to take her daughter home so she could go to school in the morning.

That must have made a huge impression.
I felt completely helpless, and also guilty because we couldn’t do anything. That girl exemplified the fragility of life and how arrhythmias can strike out of the blue and kill you. Shortly after that, I took care of a writer who had a bad heart who was so fearful. We’d call people like him “cardiac cripples.” They’d figure if they didn’t do anything and just sat in a chair, they’d be safe. The fear of that happening stuck with me.

So, when did your symptoms begin?
1993. My wife and I had just moved to Miami when I started experiencing these episodes of rapid heart rate. It was frightening and I knew they weren’t normal. By the time I’d get to the ER, they were resolved. I’d get the same answer: You’re stressed, and it’s a cultural adjustment moving from Boston to Miami. It must be anxiety.

Then one day I was weaving in and out of traffic on the highway, and I thought I was going to die. I had mounting chest pain, I was sweating, and a sharp sensation radiated through my jaw and down my arms. I felt nauseated and my heart was racing. It just couldn’t be anxiety or stress. I felt like I was having a heart attack. But by the time I pulled into the ER, the pain had resolved, my heart rate had returned to normal, and I got the usual “you’re stressed.”

What other symptoms did you have?
I had this episode of “brain fog.” I was working every day, but I just wasn’t all there cognitively. I gave a lecture and afterwards couldn’t remember anything I’d said. It felt like I’d taken way too many Benadryl. I had extreme fatigue and muscle aches. I went from running 10 to 12 miles a day to being incapacitated — I couldn’t walk around the block.

So, you weren’t tested for Lyme disease right away. What did they think you had, and what did they rule out?
The big ones were rheumatoid arthritis, lupus — all of the autoimmune diseases. But the blood tests were clear. Then they thought about seronegative rheumatoid arthritis. They also thought I had some malignancy that wasn’t manifesting in a normal way.

Did they test you for Lyme disease, or even consider it?
No. Even though they knew I had been living in an endemic area, even though they knew I probably had many of the symptoms.

As someone who has called an ambulance for a panic attack, I know how terrible they feel. Did you think maybe it was just anxiety?
My instincts were always screaming, This is not stress. But after several years, you do start to think, Are they right? I tried alternative therapies, none of which made a difference, and that really heightened my concern. The more I was told that it was stress the more I was convinced that something was wrong. It evolved into a “me against them” mentality — they are telling me this and I trust my instincts more than I trust someone who doesn’t know my body. It felt like people were frustrated and it was more convenient to blame stress than say, “I don’t know what this is, but I’m not feeling very comfortable telling you that it’s stress; we are going to do all we can to figure it out.”

Did anyone ever try to treat you with anti-anxiety medication?
It was suggested, but I knew it would only mask what was going on and I didn’t want to look like some happy zombie wearing a fake smile while my body was deteriorating.

Did you ever consider Lyme disease?
You know, I think within the first year or two of symptoms, it did cross my mind. I went to the internet like anyone else and I started Googling. They call Lyme disease “the great masquerader” because it can present in so many different ways. But when you’re feeling really bad, it’s hard to focus clearly. You’re thinking like a patient rather than a physician.

Was that an uncomfortable role reversal for you?
Very. It was tough going from the caregiver to someone who needed care. My internist was a good friend of mine and I think he was as frustrated as I was. There was clearly no malice. Unfortunately, the “stress” thesis was reinforced by other physicians I saw in emergency rooms. It just became a convenient diagnosis. 

So, what was your quality of life like?
I was becoming one of those cardiac cripples. I wasn’t exercising like I used to because I was so scared I’d precipitate an arrhythmia. We didn’t become hermits, but I didn’t have the stamina to do much aside from work and go to dinner or shows. I was in my mid 30s, the active peak of my life, but it was like I was an old man.

What was it like being in a hospital when you were going through this? Did it make it hard to tune it out?
It was very difficult. For a start, I was incredibly busy. I ran a lab, wrote grants, and took care of really sick patients. And I bring a very personal approach to my practice. I used to make house calls when my patients were dying, sitting by their bedside with their family for 24 hours. I had an untreated raging infection and I had to deliver skillful care with a lot of compassion. It was hard.

What was the impact on your marriage?
My wife was a pillar of strength. She’s an oncology nurse, so she’s taken care of a lot of sick people. Many marriages fall apart the minute somebody gets unwell — it can expose whatever weakness there is. I’ve seen people walk out on their spouse while they were getting a bone-marrow transplant. I was incredibly lucky. She knew that it wasn’t all in my head. And during those years, my wife and I were dealing with pregnancy and fertility issues, which were emotionally draining. There were moments when I had to be her caregiver and, amazingly, at those times, the arrhythmias seemed to calm down.

Fertility issues? What happened?
My wife had two miscarriages. We were trying to start a family and we were going through the ups and downs of IVF. The first pregnancy in 1994 was difficult from day one. She had pains nobody understood and experienced constant bleeding. Sometimes I had to pick her up off the floor and take her to the emergency room. One day I found her crying on the floor of the bathroom, in a puddle of amniotic fluid. She’d suffered a premature rupture of her membranes. There was a period where the pregnancy was still potentially viable. The heart was still beating. They were going to do this heroic procedure to replace the amniotic fluid that had leaked out, so she spent seven days in the hospital. But they had to terminate the pregnancy by inducing labor. We named her Ilana — the hospital sent us a photo of her in her blue birthing cap. We didn’t even hold her. 

Then it happened again, about 18 months later. This time my wife had a dream that she couldn’t feel the baby’s heartbeat, and she was right. We don’t know what caused it. Those were some really difficult times — they still are, to be honest with you. Many people don’t speak about it and that means that people don’t know how to react. They mean well, but they say the worst things possible: “Well, that will happen — go take a cruise to the Greek islands. Go shopping.” As if that will replace what you’ve lost. Shortly after all that, I was diagnosed with third-degree heart block. That’s heart disease. My heart’s electrical system was shot.

But still no Lyme disease test?
Earlier, I’d had an episode of arthritis in my wrist that was so bad I couldn’t lift utensils. I was put on doxycycline, which is the same antibiotic used to treat Lyme disease. Within 24 hours, my arthritis resolved.

Just after the heart block diagnosis, when they were waiting to install a permanent pacemaker, I said this could be Lyme disease. I requested that the blood test be sent to a lab that I thought might be more thorough than the one in Miami. If it was Lyme disease, I was thinking, Just treat me with heavy-duty antibiotics and maybe this will reverse. I didn’t want the permanent pacemaker if this was all reversible. But I got the phone call from my cardiologist saying “It’s negative — we are scheduling for you to have surgery.”

What happened next?
I didn’t feel better and the arrhythmias didn’t go away. When I told this to my cardiologist, a famous arrhythmia specialist, he said, “Denial is the most common reaction in someone your age who has been told they have heart disease. Go out and live your life.” The implication was that it was all in my head. Despite his stellar reputation, I refused to go and see him again. I was completely disgusted. I knew it wasn’t denial. If I’m open with my doctor and tell him I’m feeling worse I don’t expect that response. I researched the success rate of Lyme disease testing.

When I look back at that time, I was really sick and I didn’t understand the whole controversy over testing. But I looked into what negative tests mean and I saw the results. They were positive — they just weren’t positive according to the CDC’s strict requirements. I called a number of major Lyme disease centers, I told them who I was, my age, that I lived in New England for eight years, and I spent time in the woods. I have had arrhythmias. I had arthritis that resolved itself with antibiotics, and I have unexplained third degree heart block.

Do you think this could be Lyme disease?” I asked. They all said no way. Sight unseen, they didn’t examine me. It was a blanket response. In the context of everything together, that was pretty brash. It was me against the medical Establishment. I called a friend of mine who was a renowned infectious disease expert at Harvard and he said, “If it waddles and quacks and has feathers, it’s a duck. You have Lyme disease.” So I asked for a second test, which was a little more positive but they still didn’t diagnose me, and then the third test came back positive. 

So what was it like when you finally got the diagnosis?
My wife and I were meeting at a Halloween party for patients. When I saw her, I told her that there was good news — “We have a diagnosis. It’s Lyme disease.” Then, I sat up all night, in a rocking chair, waiting to see the sunrise. I remember thinking This is great. I have an infectious disease and there’s an antibiotic to treat it. This could all be completely reversible. There’s a name for it. There’s a treatment for it. I’ll get beyond this.

I have a feeling that’s not the end of it, right?
Just after I was diagnosed, I went to New Jersey to see a Lyme disease physician to recommend treatment. I figured nobody in Miami would know what to do other than read a book, or maybe find an episode of Grey’s Anatomy. I had the pacemaker, but I was having heart irregularities and not feeling well. On the way home, we were running late and I was getting anxious. The more anxious I got, the more skipped beats I was having. I finally get there and attempted to run through the airport, and I become lightheaded and dizzy. Then there was what felt like a massive explosion — someone punched me from inside my chest. I fell to the floor. A woman came running out from an Au Bon Pain. Turned out she was an ICU nurse and she explained that I’d been shocked by the pacemaker.

That was the first time it had ever happened. She helped me up and they put me on a little trolley. They wanted to call 911 but I insisted on getting on the plane. I thought: I’m going to die on this flight. When we landed, I walked off the plane onto the jet bridge and my heart started to race. It happened again. Two shocks in one day — that was pretty bad.

Were you treated for Lyme disease? Did you make a recovery?
I had three months of daily IV antibiotics. I would sit there in the chemotherapy room next to my patients, but we didn’t talk. Some of my symptoms got better, but the cardiac problems didn’t resolve because of the scarring that had occurred.  

About a year after I had the pacemaker put in, we had my daughter, Celeste. The joy was short-lived because when she was probably 6 weeks old I was told that I had 10 percent heart function. It went from joy and elation — I finally had a family — to being smacked in the face with the news I needed a transplant.

Oh God, how did you discover that?
I realized I couldn’t be working seven days a week, 24 hours a day, being emotionally distraught every time a patient died. I got a new job in North Carolina, which was more focused on drug development. I went to see a cardiologist so he could check my heart function to see if I could exercise. Twenty-four hours later, I got the phone call: “Is there a chair nearby? I’ve got some bad news.” I remember driving home from my new job in tears. I went home and thought, My life is over. It was that day that I realized I didn’t have a choice about my heart function, but I had a choice about how I was going to live my life.

Did you go on to have more of those awful shocks?
I probably had eight or ten. Once I was throwing my daughter around in the pool and I had that sick feeling. I knew I’d drown if I got shocked in the pool. I yelled to my wife, who came with another woman to pull me out and they both got shocked, too. After they managed to get me up to the deck, I was on all fours and it went off twice more. My daughter was huddled looking at me, and again I thought, This is it. I’m going to die.

You experienced that so often, is it possible to describe what it feels like?
There’s nothing that I can think of that compares. You realize it’s the closest thing to death. You have the best device inside of you — if that doesn’t work, what will? It happens in slow motion and you hear the battery revving up and then you brace, you know what’s coming. Then there’s a release of adrenaline and you shake for an hour, purple lips, teeth chattering 

It’s amazing you managed to continue, that the fear of the shocks didn’t paralyze you …
I lived a pretty normal life, except getting shocked periodically. With the exception of my wife and my cardiologist, nobody knew how sick I was. I could have died at any given moment. In late 2008, things really started to deteriorate. I noticed I had to stop to catch my breath when I went up hills that I didn’t have trouble with before. Then I had what I call six weeks of living hell when I had a complication following surgery to replace the pacemaker battery. That set off a chain of events. I started having 20 episodes of arrhythmia a day. Then one day I took a shower and I thought, Wow, I can’t see my feet below my belly, like I had drunk a six-pack of beer.

And then my stomach just got bigger and bigger until I looked like I was six months pregnant. My feet were so swollen I couldn’t even fit them into my largest pair of slippers. It was the scenario I’d always feared. My kidneys started to fail. I was in and out of the hospital. I developed restless body syndrome. I couldn’t sit. I couldn’t lie down. We sent my daughter to be with a cousin and I wrote a letter to her because I really wasn’t sure I would survive. I hadn’t been able to eat in a month without getting sick. I couldn’t sleep. If there had been a gun in the house, I would have put it to my head.  That night, I said to my wife, You have to load me up on morphine and put me out of my misery. She had no words. I ended up back in the hospital and a surgeon came in on a Friday afternoon. I’d never met him before.

What did he say?
“You need a heart transplant or you’re going to be dead by Monday. You need to stop trying to control the situation. You have to give up the power. You have to let us take over.”

How did you feel when he said that?
I put my head back and thought, That’s it. This is all I can do. I’m not an organized religious person, I’m more spiritual, but it really was like, Let’s just let higher powers take over. Thirty-six hours later, I was in surgery. Because I only had 72 hours to live and I was on life support, I immediately shot to the top of the list. I also had AB blood type, which is very rare, but it’s the universal recipient for heart transplants. 

Do you know who you got your heart from?
Yes, but I almost got a different one. Pretty soon after the diagnosis, my surgeon came in and said, “I have to get your permission to accept a high-risk heart.”

What’s that?
Well, they said, “This heart comes from a pedophile who abused drugs and died in prison. You have to agree to receive such a heart.”

Did you accept the pedophile heart?
When I tell that story, people always assume I said yes. I was dying. Of course I’d take the first heart. But I actually didn’t know what to say. I immediately thought of this movie where some guy gets a hand grafted and it’s from a criminal and then he starts to kill people. It was like this psychotic hand on this normal person.

Were you scared of having a pedophile’s heart?
Yeah. But, luckily, I didn’t have to make that decision. When I got the call saying they had a heart and could do the transplant, it wasn’t the high-risk one. It was such a blessing. I really don’t know what I would have said.

Whose heart was it?
I got my heart from someone called Vicki. Because of regulations, I don’t know much about her except that she was very healthy — I don’t even know how old she was when she died. She worked in the restaurant business. I wrote to her family and told them how she would live on in the work that I do. I told them it’s ironic: I used to help give the gift of life through bone-marrow transplants, and here I was, the recipient of a transplant. I told them that the greatest act of kindness and love that a stranger could do for another is save a life. 

What’s your life like now?
About 18 months after the transplant, I realized I felt great for the first time in nearly 20 years. I can run again, even marathons. It’s nice to be able to go out and do things and not worry about this pacemaker defibrillator in your chest or having arrhythmias. I wish I could say I don’t worry about every little thing the way I used to, but I have sort of fallen back somewhat into this trap of getting wrapped up in things I shouldn’t be concerned about.

Did you ever beat yourself up for not thinking of Lyme disease earlier?
I feel like it would be wasted energy, but I do go back and wonder if I missed anything: I don’t think I have ever told anyone this, but if I recall — and it was a long time ago — there may have been a very atypical looking rash. I remember thinking maybe it was just a belt-line irritation and it came and went. However, in a strange way, this whole ordeal had a positive outcome. I don’t think I would have switched careers without this illness, and I developed important cancer drugs, one for pediatric leukemia and the other a targeted therapy for breast cancer. Maybe the lesson for me was not to worry, “Oh no, did I miss something?” but how I managed the challenge.

How often do you think this happens to people who don’t have the resources or knowledge to question doctors, and how different would your experience have been if you didn’t have connections and confidence to challenge the medical system?
I think it happens more often than we’d like to admit. If you don’t know how to research your problem and you don’t know how to figure out the lingo, then you probably get into this trap of feeling intimidated by the medical profession. I hear it all the time. Patients assume doctors are omnipotent and they know everything there is to know about the universe. And I think that’s a dangerous thing for people who are uninformed. It’s a terrible indictment of the patient-physician relationship. Obviously, that’s a generalization; there are some great physicians out there, but there’s less and less time to spend with your patient.

And doctors are human, too. They have the same problems as everyone else, but with an extra burden that most people never experience of having the responsibility over someone’s life. I know when I was sick, I didn’t tell my patients. If I had not been an insider and if I had not been able to push for the information I needed, there’s no question I’d be dead.