Patients suffering with Lyme disease and related ailments are frequently discarded and disenfranchised by a medical system which disavows the reality of their illness. Patients so suffering have a myriad of complaints and symptoms which may appear bewildering to the modern doctor allowed 6 minutes by managed care or to the super-subspecialist who views them through a narrow lens. The would be/should be diagnostician comes to the bedside of the sufferer with a suitcase of suppositions and biases. From the start, doctors these days seem possessed by an annoying compulsion to make a diagnosis as quickly as possible and deliver the news to the patient as soon as possible, preferably by the end of an initial 6-minute encounter. Today’s healers, along with their patients, cling to a belief that clinical diagnoses can be supported by technology of one sort or another. To the extent that a patient’s history can provide an underpinning of diagnosis, medical clinicians expect a narrative that makes sense within the context of a particular frame of reference. That frame of reference is largely based on mainstream notions of disease.
Within that culture (mainstream medicine) chronic Lyme disease is nonexistent fiction except in the minds of confused patients of who spend too much time on the internet or in the minds of charlatans (Lyme doctors), poised to take advantage of long-suffering souls or who are at best well-meaning but poor clinicians chasing treatments based on an ill-conceived diagnosis “du jour.” Before the 6-minute doctor walks into the patient exam room the prospect of a diagnosis of chronic Lyme is nil.
The early focus is on the patient history. Patients present with a hodgepodge of incoherent symptoms as perceived by our doctors. Doctors, who are taught to look for patterns seen none at first blush. When a doctor sees a patient the gears in his mind are spinning (if he’s had his coffee), looking for connections with the quick assemblage of possibilities, the differential diagnosis. Of course doctors can only diagnose what they know. And doctors are taught that is much more likely for a common disorder to present in an unexpected way than for a rare disorder to present itself in the context of the same confusing patient presentation.
With this said, most clinicians think about the same diagnostic possibilities: depression, somatization disorders (psychosomatic), fibromyalgia, chronic fatigue syndrome and autoimmune syndromes. Pieces of the story which may not comport with the chosen diagnosis are conveniently excised. The clinician having quickly formed an impression, even within the context of a brief encounter, shares the presumptive diagnosis with the patient and makes a referral or writes a prescription on this basis.
Today, the more enlightened mainstreamers understand the concept of post-Lyme or post treatment Lyme syndrome. Still, this disorder is described within the context of clearly established early Lyme, previously treated with persisting symptoms. The description of the syndrome is fairly limited: fatigue, brain fog, aches and pains, numbness and tingling and perhaps a few other symptoms. But this diagnosis is made reluctantly. The diagnostician, generally a biased infectious disease specialist, demands evidence of a tick bite, perhaps a rash and “dependable” affirming laboratory findings. Should the diagnosis be made – grudgingly, there is no offer of treatment. Instead patients are told they will generally improve over time, or not -- no further thought given as the specialist moves on to the next patient.
Most infectious disease experts spout that Lyme doctors erroneously make the diagnosis, more often than not, in the absence of evidence of a tick bite or a positive blood report. Not only is chronic Lyme the wrong diagnosis, but the patient is said to have never have had Lyme at all.
The process described above occurs with regularity and predictability. Of course patients, the sick and the uninitiated, have no idea what lies in store when they dial the family doctor’s office to schedule an appointment.
The fight over Lyme has been ongoing since the disease was first named in 1977. Polly Murray, the first diagnosed patient, who shared her woes with a famed doctor at Yale was a bit put off when a new disease, “Lyme disease”, was announced to the world, because it was described as a disorder characterized by joint pain. What about all the other symptoms which had been going on and on for years? She was told: No disease causes all of those symptoms. This oft mentioned refrain has been thematic until the present. No disease can cause all of those symptoms. Doctors do look for recognizable patterns of symptoms. This is why chronic Lyme symptoms are easily subsumed by the diagnosis of chronic fatigue syndrome or fibromyalgia. The shoe fits – more or less. In 1977 even these categorizations of illness were decades off in the future.
Previously the best fit was psychosomatic disorder. As I was taught, a positive review of symptoms (positive symptoms in so many, unrelated domains), is itself evidence of a psychiatric basis for all of the complaints. Again, we have to go back to the idea that doctors only diagnose that which they know.
But there are diseases which cause seemingly unusual constellations of symptoms. In her book, Polly Murray somewhat poignantly tells the story of one physician who carefully listed to her and said: He believed there was something physically wrong (validating) but medicine did not yet have the tools to understand, diagnose or treat the disorder and he hoped that at some future date things would change. Why is this poignant? Doctors feel annoyingly compelled to make a call, provide a diagnosis, a label. The “I don’t know” diagnosis is rarely employed. Unfortunately, once a patient is so labeled, the diagnosis, frequently one with negative connotations, becomes indelibly tattooed to the patient’s forehead, prominently displayed when the patients seeks opinions from subsequent medical practitioners.
Doctors have a hard time understanding their world in proper perspective. Like others, they are caught up in the moment. Their professional world occupies a point in space in time. Things are ever changing. Knowledge is ever increasing. The truths of medicine and science are always a moving target, always outside our grasp. The current state of the art will invariably be proved wrong. The current paradigm will be inevitably replaced by a new one as any student of history clearly knows.
This brings us to issues of the Lyme patient and the Lyme doctor. Lyme patients more often than not present with patterns of symptoms that are seen over and over again. The symptoms are neither random nor manifestations of a modern epidemic of madness. Lyme patients may complain of fatigue, disturbances of energy and sleep, pains which move about, strange sensations, numbness and tingling, cognitive changes and others. Those with Babesia may consistently have flulike symptoms, night sweats, air hunger and emotional changes. Those with Bartonella may have certain rashes, heel and shin pain, other sorts of muscle pains and specific psychological symptoms etc.
The Lyme doctor differs from his colleagues because he resides in a world of other possibilities. One in which Lyme is placed highly in the ranks of differential diagnoses. He is someone who knows that the problems of Lyme, diagnosis and treatment are far from worked out. Her certainly understands that current technology does not give us the answers.
But I think the Lyme doctor is one who puts his patients above all else. He tries to cobble together that which is known with that which is suspected and go out on a limb, offering treatments which may help the Lyme sufferer, at the same time avoiding harm, such treatments based on science and various clinical resources, but outside the standards offered by the narrow prescriptions of the accepted paradigm of the day. Speaking for myself, the Lyme doctor is one who uses the tools handed him by the profession but in some unique ways, caring more about his patient’s welfare than his own or what his colleagues may think of him. The Lyme doctors allows himself the luxury of critical thinking in a day when that particular commodity is eschewed, in favor of guidelines, the product of our institutions. The danger of thinking for yourself is that you might get it wrong. Powerful forces say you are. But clinical experience tells us we have it right, so we persevere, and thousands of lives are on the line.