Music is my “raison d’etre.” And boy, does Lyme get in the way.
By Dan Flanagan
I’ve been a violinist for 40 years and I have made a living from it since completing school 20 years ago. I’ve also been afflicted with chronic neurological Lyme disease and co-infections for 33 years, and boy oh boy, does it get in the way.
I started learning the violin just before my fifth birthday through a Suzuki program in New Jersey. Playing the violin was fun and easy for me in those days.
My teacher kept jumping me up to the next class, like skipping grades, and she eventually encouraged me to audition for the pre-college division at the prestigious Juilliard School. I refused. Saturdays were for baseball, skateboarding, and general mischief. However, I continued to study with many excellent teachers.
The difficulties began
When I was about 12, the difficulties began. First it was insomnia and depression. Pain showed up in my left shoulder when I was 14, obviously from playing the violin so much. At 15, while the depression and insomnia intensified, the pain migrated to my neck and then down my spine.
My parents brought me to every doctor and practitioner they could find: chiropractic, physical therapy, acupuncture, Feldenkrais, Alexander Technique, and countless orthopedists, one of whom wanted to operate on disks L1 and L2, because they appeared to be deteriorated. It wasn’t a sure thing, so we chose not to.
At 16, I was wearing a giant hard plastic brace that strapped around my abdomen from armpits to waist and had a team of shrinks prescribing pills. Playing the violin was no longer fun or easy. I started to feel like I could never get warmed up, stiff muscles got in the way of accuracy, and playing became laborious. When I’d perform, I’d shake all over, which my peers and teachers attributed to being nervous. The violin had long since become my raison d’être, so I forged ahead.
The “all in my head” diagnosis
We found a notable doctor in New York City who’d written several best-selling books about how back pain was usually psychogenic — meaning it was caused by psychological factors. I had a few meetings with him, and he said I fit the bill; I had Tension Myositis Syndrome. I’d received a PTSD diagnosis a few months earlier because of an accident my brother had, so this made sense. He said deteriorated disks are common and usually not painful.
The protocol? Acknowledge that the pain was created by the unconscious mind to distract the conscious mind from the bad things that are too painful to face and do it regularly enough that the concept becomes fixed in your unconscious. We believed him.
Over the next decade or so, my back pain got worse and worse, as did the other symptoms. In my 20s, I developed tendinitis in my left wrist, as so many violinists do. I saw several doctors and was told to stop playing for two weeks, which was heartbreaking. After two weeks off, not only did the pain not subside, but it then showed up in the right wrist.
At this time, I was living in Sacramento, playing concertmaster of the Sacramento Philharmonic and California Musical Theater, teaching at UC Davis, and running the Sacramento School of Music, which I’d founded. I saw lots of doctors at this point: spine centers, sports medicine, pain management, hand surgeons, among others. Many didn’t know what to tell me and passed me off to somebody else. Others blamed it on stress.
By this point, from age 15 to 29, I’d probably seen over 30 practitioners for these chronic ailments that never seemed to heal. Most of them mentioned stress or other psychological conditions as the culprit and/or excessive violin playing. A few of them threw around the term “fibromyalgia.”
Stopping the violin
Bewildered and scared, I decided to stop playing the violin until I healed. I found a body worker in California who was popular with musicians. His diagnosis was the same, so I started weekly sessions with him, combining massage with his arm-chair psychology. Whenever I was in pain, I was instructed to identify what my headspace was at the time, acknowledging that I’d created it myself.
During this time off from playing, I continued to teach. But after 20 months of not playing the violin and experiencing no improvement of my pain, I needed to go back to work.
As I continued to play throughout my 30s, all the symptoms increased. I developed tendinitis in my elbows and my knees. The pain and muscle spasms from those injuries increased and migrated, eventually meeting up with the pain and muscle-spasms in my back and neck. I developed vertigo, brain fog, and tinnitus.
One day, when I was 37, I was standing in the bathroom, too exhausted and dizzy to get in the shower. I started thinking about how easily I’d been injuring myself and how nothing ever seemed to heal. That’s when it hit me—I must have a systemic disease and this psychogenic diagnosis was bullshit.
I went to my doctors and exhausted all the available options. They tested me for every auto-immune disease they could. There was one day that they took out 18 tubes of blood. The result was always, “good news, you’re perfectly healthy!”
My dad said he thought I might have Lyme disease. When I mentioned it to the doctors, they refused to test me for it because I’d never found a tick on myself. I kept insisting, so they finally tested me. Negative. More “good news.”
The symptoms continue to pile up
As a couple more years wore on, I continued to be riddled with fatigue, depression, pain in every inch of my body, vertigo, headaches, brain fog, rashes, testicle pain, tinnitus, gut issues, metabolism issues, diarrhea, light sensitivity, sun intolerance, allergies, nerve pain, numbness, etc. Some days I could barely move.
One day, when I was 39, my friend Robin said she’d mentioned me to her nutritionist. The nutritionist suspected that I had Lyme disease and encouraged me to call her. This practitioner explained that the mainstream Lyme test, which I had been given, often shows a false negative. She administered newer tests and—Eureka! I was positive for several infections.
To be sure, I confirmed this diagnosis with Lyme experts up and down the West Coast. They all agreed it dated back to when I was about 12 years old.
It was amazing to know that all along, my collection of ailments was caused by this disease. I’d previously been trained to believe that I’d caused all this myself. For decades, whenever I felt pain or other symptoms, it was accompanied by guilt and self-loathing, and it wasn’t easy to undo this.
For five years, I tried everything my Lyme doctors wanted me to do, none of which was covered by insurance. Some days, I took up to 80 pills. Eventually, I developed “pill fatigue,” which caused me to gag the instant a pill touched my mouth. I also tried various elimination diets. Towards the end of these efforts, I was on three intense antibiotics simultaneously for about nine months.
An interesting thing happens when you attack Lyme with antibiotics. The Lyme actually fights back, causing the patient’s symptoms to grow exponentially worse. It’s called “herxing,” coined by Dr. Herxheimer. For most patients, this lasts a few weeks, but for a few of us, it lasts indefinitely.
I did four different stints of antibiotics. Each time, the “herxing” never subsided and we had to abandon the treatment because it became dangerous. I did all the standard treatments over the course of five years, then a little over a year ago, I gave up. I decided to live my life the best I could with the diseases until a better treatment or cure is discovered.
How does the disease specifically affect my violin playing, you ask? Well, the muscle stiffness keeps me from playing as accurately as I know I can and there’s always pain. There were a few days here and there when a Lyme treatment gave me relief for a few hours, and I experienced what health feels like.
A brief respite
Once in Seattle, after cleaning out my blood with ozone, I felt all my muscles and joints relax, the oppressive fatigue lifted, and I ended up running down the street with tears of joy, like I was in a corny movie. A second ozone treatment did the opposite, so I’ve been afraid to try it again. A couple of times, while taking antibiotics, the symptoms dissipated briefly and I could get around the violin accurately with ease. That feeling never lasted, though.
What the audience hears from me is not Dan on a good day, by the way. There aren’t any good days. The audience hears Dan struggle through each note, trying to create beauty through pain, pretending that it’s okay. Symphony and opera concerts are often excruciating for me due to the constant playing, particularly in restrictive tuxedos under hot lights.
A few of the Lyme doctors, when reviewing my test results, couldn’t believe that I still played the violin. But I remain obsessed with music and the violin is still my raison d’être. I’m fortunate and grateful to have had so much support from my family, friends, colleagues, and a few good doctors.
Rhapsody in Discomfort
My composition, “Ehrlichia,” Rhapsody in Discomfort #6, came about when Paul and Vicky Ehrlich, my compatriots in Trio Solano, asked me to write a piece for us to play. As close friends, we’d discussed Lyme often, amused by the coincidence that Ehrlichia, one of the diseases under the Lyme umbrella, was named after the Nobel Prize-winning physician, Dr. Paul Ehrlich (of no relation to my friends).
Composing a piece on this topic, with the title Ehrlichia, was originally supposed to be funny. But it morphed into something that people took seriously, including me. I composed Ehrlichia during the pandemic shutdown.
Funded by a grant from InterMusic SF, we made a video of Ehrlichia and shared it on YouTube. We’ve since received hundreds of comments from people with tick-borne diseases, who thanked us for creating this. Many said that it sounds the way they feel. It’s also brought catharsis for me. I know it’s a cliché, but I expressed the pain, and I felt better; and the audience responded.
Below is the YouTube video of Trio Solano playing “Ehrlichia,” Rhapsody in Discomfort #6.