I, (Dr. Phillips) came down with my first case of known Lyme while backpacking across Europe between my first and second years of medical school. It should have been a straightforward diagnosis: a history of rashes compatible with EM followed by flu-like symptoms, then cardiac, neurologic, gastrointestinal, and musculoskeletal symptoms. But it was missed by a team of academic doctors in New York City. It wasn’t until six months later, after learning about Lyme in med school, that I demanded a Lyme test, which luckily enough was positive at a local lab.

By then, however, Lyme was entrenched. Although antibiotics helped greatly, I experienced multiple relapses with each attempt to stop them, which prompted even more doctor visits. I ended up seeing about fifteen specialists, about half of whom re-treated me with antibiotics, frequently intravenously as was the preference among infectious disease doctors and rheumatologists in the early 1990s. The other half told me Lyme was gone, and that I was having “after-effects” of the infection (which just happened to get worse not only when antibiotics were discontinued, but also temporarily upon restarting them, consistent with Herxheimers).

Growing up, I had no health problems. I did great in school, was athletic, slept well, and was happy. But then a one-time episode of lightheadedness at age seventeen prompted a cardiologist visit and I was diagnosed with mitral valve prolapse. This is a common, largely innocuous heart condition, but in my case it was associated with advanced degeneration of my heart valve. My cardiologist estimated that I’d need heart valve surgery by the age of fifty. Nothing changed for seven years until I was diagnosed with Lyme and started long-term antibiotics. After that, my mitral valve started gradually healing on its own, which was demonstrated by yearly sonograms of my heart. By the fourth year of treatment, I had no heart valve disease, and at the time of this writing, at age fifty-four, my heart is still normal. What was the Connection?

While I’m certain that I got a new Lyme infection during medical school, it’s also possible that, despite being otherwise healthy, I got a weak strain of Lyme, or Lyme+, early on in life, as several of these infections have been shown to cause heart valve disease. It’s been extensively documented in the medical literature that mild versions of these infections are common. By the end of my medical training, my health was good, despite chronic Lyme. At that point, my goal wasn’t to be a Lyme doctor. That all changed when I realized my father had been suffering with undiagnosed Lyme for twenty years. His Lyme diagnosis was missed by the heads of cardiology in multiple teaching hospitals in New York City, which eventually culminated in life-threatening heart problems. By the mid-1990s, he was given six months to live unless he had a heart transplant, which was the next planned step. Since Lyme is a known cause of dilated cardiomyopathy, my father’s condition, I asked his cardiologist about the possibility that he might have Lyme-induced heart failure, but he wouldn’t even entertain the notion. To make a long story short, I diagnosed and treated my father with Lyme when his cardiologists scoffed, and his heart function began to normalize. About a year later, my father’s heart failure had resolved, and antibiotics were continued for two more years. At the time of this writing, my father is eighty-seven, and not only has he never needed a heart transplant, he still doesn’t have heart failure.

In August 2010 my own story took a darker turn. Over several weeks, I developed excruciating neck, back, and shoulder pain. I have no other way to describe it apart from saying that it was shockingly severe. I’d never experienced anything like this with my prior Lyme and several rounds of oral antibiotics brought only minimal and temporary improvement, leaving me baffled and scared. 

In the weeks that followed, my sternum became visibly swollen, the pain intractable. My Lyme doctor, assuming this was due to Lyme, prescribed the intravenous antibiotic ceftriaxone (Rocephin), which had never cured my Lyme in the past b S ut at least used to help. On a grey day in November 2010, three months after I first woke up with neck pain, I had to leave work because of wrenching sternum pain, canceling a full day of patients. I remember texting my brothers as I got into my car to drive home, barely able to lift my arms to the steering wheel, “I don’t know what’s happening to me. Getting worse every day. Leaving work to go home. I’m so scared.”

Desperate, I restarted ceftriaxone that day. Within hours, all my joints were screaming in pain, which never happened in the past on that drug with my prior Lyme. But within a few days, my sternum swelling and pain improved. I stayed on it longer, thinking the joint pain was a Herxheimer that I had to see through, which I did for several months, but despite the improvements to my sternum, everything else continued to worsen. And within two days of stopping it, my sternum pain crept back. 

My symptoms expanded to include a piercing pain in the bones of my sacroiliac (SI) joints, which are the main joints connecting the lower spine to the hips. The pain was so extreme that I couldn’t stand, let alone walk, for more than a few minutes. My doctors couldn’t help The antibiotics that had worked best in the past to buoy me from the depths of Lyme were failing miserably. A functional medicine doctor couldn’t help me either, despite strict adherence to her restrictive diet and faithfully taking all her supplements. Connective tissue throughout my body became so tight and injury-prone that simply straightening my legs was torture, resulting more than once in internal bleeding, with blood pooling in my calves. And like clockwork, all symptoms worsened markedly in the late afternoons, associated with severe flu-like symptoms forcing me horizontal and under blankets. I mentioned this afternoon worsening to every doctor I saw but it rang no bells.

I saw a rheumatologist soon after. The furrowing of her brow while performing a very thorough physical exam spoke volumes. By that time, the areas behind both knees were so contracted that they stayed bent after getting up, forcing me to walk like a crab for a few minutes. During the exam, while lying on my back, I couldn’t raise my legs off the table due to the pain in my knees and SI joints. Unsolicited, she told me that I was fully disabled, incredulous that I was still working. That was January 2011, five months following the first surge of pain.

She was the first doctor to accurately describe what was going on with my back: spondylitis, which means arthritis of the spine, which is not a diagnosis that explains the origin of the problem. It’s descriptive only, a label. She held my hand, looked me in the eyes, and said, “We can cure this,” later recommending Enbrel, a powerful immunosuppressant, which was the “cure” to which she referred. I immediately wondered: To cure something, isn’t it important to know its cause and get to it, rather than mask its symptoms?

I didn’t want palliation. I wanted to get to the root. I refused Enbrel and requested a trial of rifampin, an antibiotic with activity against Bartonella, despite my numerous negative Bartonella tests. One day into rifampin, malaria-like symptoms emerged: chills and malaise so profound that I could do little else other than lie down under covers and suffer. My sternum pain spiked so intensely that I could barely breathe and couldn’t speak in more than a whisper. Without a pain doctor, I had to stop rifampin after only two days. It was then that I woke the beast. Within weeks I became extremely anemic and developed recurrent fevers to 102°F every night. My spleen enlarged, and my C-reactive protein levels (CRP), which measures inflammation, were off-the-charts high. My late-afternoon flares forced me to be horizontal from about 3:00 pm to 9:00 pm, unable to sit up without passing out. Within six months I lost forty-five pounds, down from 180 to 135. A parchment tracing of my former self, I couldn’t believe how broken I’d become.

Over a more than two-year period, I saw about twenty-five doctors and it became painfully clear how little they knew. Autoimmune and chronic illness is a gaping black hole in medical science, and I was sucked in. 

I filed for disability with a target closing date of June 15, 2011, but by June 4, I couldn’t take a single step on my own, and was forced to leave the office. I was taken home to bed, and there I stayed, confined to my memory-foam mattress prison for a full year, ultimately requiring twenty-four-hour care, unable to turn over in bed or sit up on my own, unable to raise my arms against gravity, losing vision from an inflammation of my eyes called uveitis, and indeed coming very close to death. I had failed one and half years of antibiotic treatment prescribed by several leading Lyme doctors, including many months of various intravenous antibiotics — all of which stirred up symptoms but never eased them. These long-term flares were described as Herxheimers by some doctors I saw, but that’s not correct — they weren’t followed by improvements. (This phenomenon is called blebbing, and we’ll elaborate on that in another chapter.) It was only when I took my care into my own hands that I turned around, ultimately saving my own life and bringing myself back to good health and vitality. Many lessons learned, the very hardest of ways.

Getting back to a normal life took a combination of luck, skill, hard work, and logic. First, the luck part: I got a chance email from an old patient, asking if I knew anything about brucellosis, as her friend’s daughter was critically ill in the hospital and she had tested positive for Although I’d heard the name in med school, I wasn’t familiar with it either, so as sick as I was, I looked it up, hoping to help if I could. As I read down the list of clinical features, my heart dropped: arthritis of the spine and elsewhere, fevers that are worse in the late afternoons to evenings, anemia, enlarged spleen, high C-reactive protein, weight loss, uveitis, and profound disability — all of my own symptoms. I started to cry as I dared to hope again.

“I relax by exercising at the gym, and going for long walks. I see as many sci-fi movies as possible, even the embarrassingly bad ones. In the summer, I paint pictures outside with the sun on my face and go out on the deck at night and feel small beneath the stars. And when I can get away, I like to go far away, forgetting my worries for a bit. And most importantly, I feel a sense of connectedness when I’m with interesting, good people, especially the ones I love.”

Then came the skill and hard work. Thankfully, I already had the expertise to understand the published medical data on brucellosis. After scouring the literature and writing to Brucella researchers around the globe, I formulated a plan. Despite my repeatedly negative brucellosis testing at U.S. labs, I shared with my Lyme doctor my ideas for an aggressive combination antibiotic treatment against this infection. Nothing else was working, so my doctor agreed to the plan, and by the second month of treatment I started to improve. 

Lastly, the logic part. If there are two lessons I’ve learned from my experience, the first is to give each treatment both “the fair shake” and “the expiration date.” The fair shake is the minimum time period an antibiotic treatment regimen should be used to begin to see benefits, and it varies by treatment. The expiration date is the maximum time period a treatment should be used without success, after which it can be considered a failure and it’s time to move on, which also varies per regimen. A big part of the reason I was sick for so long is that I stayed on ineffective medications far longer than I should have, on the advice of my doctors.

And the second lessons is that if it walks and quacks like a duck, it’s probably either a species of duck or at least another water bird. My Brucella tests ultimately came back negative even from an esteemed university-based research center in Europe. I received the email congratulating me on my lack of brucellosis after I was already starting to improve on its specific treatment. Either my tests were falsely negative, or I had a new species of Brucella, or I had a species of Bartonella, Brucella’s very close cousin, or I had some other closely related bacterial infection. These are the choices that most logically explained my symptoms, my resistance to many aggressive antibiotics, and my ultimate improvements with directed therapies against these classes of organisms. An eye-opening article in the Proceedings of the National Academy of Sciences in 2016 estimated that 99.999 percent of microbes on our planet are yet to be discovered. It’s a humbling reminder of how little is known about the microbial world.

After months of effective treatment and considerable improvements, I revisited two of the three rheumatologists I’d seen before, to update them, thinking they’d change how they view their other patients with rheumatologic diagnoses. To my surprise, the first one said she was very familiar with brucellosis, that she actually trained under an expert in the field. And then she congratulated me for figuring it out, saying, “You did it!” But it would have saved me two years of pain and suffering if she’d pointed me down the right path when I’d first seen her. I told her that maybe her rheumatology patients had something similar and that maybe they could get better too, but was met with a blank expression. When I updated the second rheumatologist, she just looked at me in disbelief, finally admitting that both my exam and my blood tests were immeasurably better, but then tried to attribute these benefits to the anti-inflammatory effect of antibiotics. Good grief, not that tired old line again. (Some antibiotics have anti-inflammatory effects and some don’t, but even in the ones that have them, it’s weak compared even to ibuprofen.) She then said, half-jokingly, that she could change my diagnosis to rheumatoid arthritis. No, thank you. I had been labeled enough, and it nearly cost me my life.

Purchase the accompanying Chronic book by Dr. Steven Phillips and Dana Parish, out now!