Ticked Off

I recently surveyed my partners and learned that over the last 5 years, they have lost only two patients to “chronic Lyme disease.” Considering that we've got droves of ticks, we should be proud of that statistic – but when I say “lost,” I'm not referring to mortality. Although we have seen plenty of Lyme disease and one young man ended up in the ICU with heart block, we haven't had any deaths that could be attributed to the disease. The losses I am referring to are patients who found their ways to other physicians and were diagnosed with chronic Lyme disease.

 I know I may be stepping into a hornet's nest with this observation, but I am not convinced that chronic Lyme disease exists as a diagnosable clinical entity. But I haven't read any credible peer-reviewed articles that make me abandon my adherence to the Centers for Disease Control and Prevention's recommendation against long-term antibiotics when Lyme disease is only suspected. We're dealing with an illness that may or may not have a rash and a collection of vague symptoms including joint swelling, low-grade fever, fatigue, and myalgias, so a diagnosis based on examination alone can be difficult. Compound this with the lack of a black-and-white laboratory test for a patient with early symptoms, and it's a disease that can at times seem to be shrouded in a haze of mystery. Fear often stalks where mystery is deepest. Fifteen years ago, when Lyme disease was all the rage in Connecticut and coastal Massachusetts, I was afraid that we had been missing it. We had all the ingredients. Maybe we were calling it something else. But we didn't seem to be having an unusual number of undiagnosed problems. However, once the disease really showed up, it was clear we hadn't been missing any cases. The presentations were protean but there was always something concrete that set us on the right track. The rash (primary or secondary), a single joint, a Bell's palsy … something. Treatment was effective.

What hasn't been easy is that there continue to be, and always will be, patients with vague symptoms of fatigue, headache, general body aches, and mild depression who never seem to rest comfortably in a diagnostic niche. They have none of the specific signs or symptoms of Lyme disease, nor does their lab work suggest it as a diagnosis, nor does any other diagnosis pop into mind.

Unfortunately, these patients may find physicians who not only feel that chronic Lyme disease exists (I grudgingly agree that a post–Lyme disease symptom complex might exist) but also believe that it should be treated with antibiotics. These practitioners also must believe that it is a very common condition, because an uncomfortably high percentage of their patients receive the diagnosis.

Staying engaged with these enigmatic patients can be difficult. They want a diagnosis as much as we want to provide one, but mostly they want to get better. It is difficult to continue to appear confident with the attitude that no diagnosis is a safer alternative to the wrong diagnosis. Heavy doses of reassurance and frequent brainstorming visits in hopes of finding an answer can weaken over time. It's not surprising that many families grow impatient with our efforts and seek other opinions. And it's only natural to feel devalued when this happens to us. The challenge is to channel this emotion into introspection, and to search for a better way to manage similar situations when they occur.

I recently surveyed my partners and learned that over the last 5 years, they have lost only two patients to “chronic Lyme disease.” Considering that we've got droves of ticks, we should be proud of that statistic – but when I say “lost,” I'm not referring to mortality. Although we have seen plenty of Lyme disease and one young man ended up in the ICU with heart block, we haven't had any deaths that could be attributed to the disease. The losses I am referring to are patients who found their ways to other physicians and were diagnosed with chronic Lyme disease.

 I know I may be stepping into a hornet's nest with this observation, but I am not convinced that chronic Lyme disease exists as a diagnosable clinical entity. But I haven't read any credible peer-reviewed articles that make me abandon my adherence to the Centers for Disease Control and Prevention's recommendation against long-term antibiotics when Lyme disease is only suspected. We're dealing with an illness that may or may not have a rash and a collection of vague symptoms including joint swelling, low-grade fever, fatigue, and myalgias, so a diagnosis based on examination alone can be difficult. Compound this with the lack of a black-and-white laboratory test for a patient with early symptoms, and it's a disease that can at times seem to be shrouded in a haze of mystery. Fear often stalks where mystery is deepest. Fifteen years ago, when Lyme disease was all the rage in Connecticut and coastal Massachusetts, I was afraid that we had been missing it. We had all the ingredients. Maybe we were calling it something else. But we didn't seem to be having an unusual number of undiagnosed problems. However, once the disease really showed up, it was clear we hadn't been missing any cases. The presentations were protean but there was always something concrete that set us on the right track. The rash (primary or secondary), a single joint, a Bell's palsy … something. Treatment was effective.

What hasn't been easy is that there continue to be, and always will be, patients with vague symptoms of fatigue, headache, general body aches, and mild depression who never seem to rest comfortably in a diagnostic niche. They have none of the specific signs or symptoms of Lyme disease, nor does their lab work suggest it as a diagnosis, nor does any other diagnosis pop into mind.

Unfortunately, these patients may find physicians who not only feel that chronic Lyme disease exists (I grudgingly agree that a post–Lyme disease symptom complex might exist) but also believe that it should be treated with antibiotics. These practitioners also must believe that it is a very common condition, because an uncomfortably high percentage of their patients receive the diagnosis.

Staying engaged with these enigmatic patients can be difficult. They want a diagnosis as much as we want to provide one, but mostly they want to get better. It is difficult to continue to appear confident with the attitude that no diagnosis is a safer alternative to the wrong diagnosis. Heavy doses of reassurance and frequent brainstorming visits in hopes of finding an answer can weaken over time. It's not surprising that many families grow impatient with our efforts and seek other opinions. And it's only natural to feel devalued when this happens to us. The challenge is to channel this emotion into introspection, and to search for a better way to manage similar situations when they occur.

I recently surveyed my partners and learned that over the last 5 years, they have lost only two patients to “chronic Lyme disease.” Considering that we've got droves of ticks, we should be proud of that statistic – but when I say “lost,” I'm not referring to mortality. Although we have seen plenty of Lyme disease and one young man ended up in the ICU with heart block, we haven't had any deaths that could be attributed to the disease. The losses I am referring to are patients who found their ways to other physicians and were diagnosed with chronic Lyme disease.

 I know I may be stepping into a hornet's nest with this observation, but I am not convinced that chronic Lyme disease exists as a diagnosable clinical entity. But I haven't read any credible peer-reviewed articles that make me abandon my adherence to the Centers for Disease Control and Prevention's recommendation against long-term antibiotics when Lyme disease is only suspected. We're dealing with an illness that may or may not have a rash and a collection of vague symptoms including joint swelling, low-grade fever, fatigue, and myalgias, so a diagnosis based on examination alone can be difficult. Compound this with the lack of a black-and-white laboratory test for a patient with early symptoms, and it's a disease that can at times seem to be shrouded in a haze of mystery. Fear often stalks where mystery is deepest. Fifteen years ago, when Lyme disease was all the rage in Connecticut and coastal Massachusetts, I was afraid that we had been missing it. We had all the ingredients. Maybe we were calling it something else. But we didn't seem to be having an unusual number of undiagnosed problems. However, once the disease really showed up, it was clear we hadn't been missing any cases. The presentations were protean but there was always something concrete that set us on the right track. The rash (primary or secondary), a single joint, a Bell's palsy … something. Treatment was effective.

What hasn't been easy is that there continue to be, and always will be, patients with vague symptoms of fatigue, headache, general body aches, and mild depression who never seem to rest comfortably in a diagnostic niche. They have none of the specific signs or symptoms of Lyme disease, nor does their lab work suggest it as a diagnosis, nor does any other diagnosis pop into mind.

Unfortunately, these patients may find physicians who not only feel that chronic Lyme disease exists (I grudgingly agree that a post–Lyme disease symptom complex might exist) but also believe that it should be treated with antibiotics. These practitioners also must believe that it is a very common condition, because an uncomfortably high percentage of their patients receive the diagnosis.

Staying engaged with these enigmatic patients can be difficult. They want a diagnosis as much as we want to provide one, but mostly they want to get better. It is difficult to continue to appear confident with the attitude that no diagnosis is a safer alternative to the wrong diagnosis. Heavy doses of reassurance and frequent brainstorming visits in hopes of finding an answer can weaken over time. It's not surprising that many families grow impatient with our efforts and seek other opinions. And it's only natural to feel devalued when this happens to us. The challenge is to channel this emotion into introspection, and to search for a better way to manage similar situations when they occur.