In 1992 a 38 year-old landscape gardener who spent his time on a Montauk golf course came to my office. We’ll call him John. John presented with acute jaw pain, limited jaw opening (at times) and an inability to bring his teeth together in consistent a way. For several months his teeth would hit on the right only, then in an even fashion for a short while, but ultimately contact could only be achieved on the left.
At first glance this looked like a common jaw problem and, therefore, common therapies were offered. Over several months, however, it became clear that treatment was not helping and John stopped coming for care. One year later I heard from another patient that he was ultimately diagnosed with Lyme disease.
With a little bit of research, my eyes were opened to how Lyme disease can give rise to facial pain and TMJ symptoms.
Lyme Disease, which is caused by bacteria of the Borrelia type, infects over 300,00 people in the United States every year. Making a diagnosis is extremely difficult as results of blood tests are unpredictable. A history of a rash after a tick bite can help make a diagnosis but 25-50% of infected people do not develop a rash at all. If left untreated, symptoms in the head, neck and jaw region can include facial tics (contraction and twitching of muscles), TM joint pain, swelling of the TM joints leading to bite changes, headaches in the temples, neck stiffness, and ongoing pain in the muscles of facial expression – making talking and smiling painful.
Most recently two patients were seen in my office with what appears to be symptoms associated with Lyme disease, as well. One, a 52-year old female, described her symptoms this way:
“Pain in my face that can be so intense that I have thought about going out on disability.”
Her pain was triggered by speaking and her jaw muscles felt as if they were pulling all the time. At times her teeth would ache, and when the frames of her glasses pressed on her temples the pain would escalate. Her facial and jaw symptoms had been present for seven months and were accompanied by exhaustion, “bizarre sensations in my body”, and disabling headaches.
Multiple medical evaluations and tests were unremarkable but her frequent walks in the Connecticut woods and recollections of insect bites without rashes had led one infectious disease doctor to be on the verge of starting her on a regimen of antibiotics. My exam did not in any way suggest a common TMD problem was the reason for her suffering.
A second patient, a 45-year old female, related a history of Lyme disease seven years prior that was “successfully treated with alternative remedies.” Upon presentation, she reported “raging pain in her face and jaw “, tight jaw muscles, intense pain when she put her face on the pillow, and fragile emotions prompting daily burst of crying. Although her Lyme disease had “been cured”, she continued to experience episodes of intense back pain that had a nerve-like character that would come on spontaneously and then pass.
Again my examination provided no evidence of a true TMD problem and full medical testing was unremarkable. Though reluctant to try antibiotic therapy, she was about to move in that direction, as she believed that Lyme disease can lead to “neural scars” that lead to the emergence of pain symptoms throughout the entire nervous system.
Although the outcome of these two cases remains to be determined, they are very similar to many other confirmed cases I have seen since 1992 when I first began to think of Lyme when patients presented with severe pain in their face and jaw that had a neural character and was described as debilitating. In just about all of these confirmed Lyme patients, there was also no historical or physical evidence to suggest a common TMD problem.
It is now my sense that the impact of Lyme disease on both the peripheral and central nervous system has the ability to produce orofacial nerve and muscle pain and at least one feature of facial allodynia (when normal activities of life such as speaking, wearing glasses, smiling, or putting one’s face on a pillow prompts pain).
Though these scenarios remain a small proportion of patients who pass through my doors, they do represent an interesting subset of patients that need care beyond our expertise. With these gained insights, it is likely that if another John came for consultation that I would be thinking of Lyme almost from the outset.
I welcome your thoughts.