Entrenched Dogma Underwrites Sub-Standard of Care

by J. David Kocurek, Ph.D.

The conventional order that has come to be known as the medical establishment was not renewed in the fermenting 1960s that shaped so many changes in long standing institutions. Rather, it has remained a segment of science that has been well entrenched in dogma since the time disease was believed to be caused by the vapors rising from the swamps. Fresh thoughts from the intellectually curious or the deep thinkers within the medical profession have always been met with distrust when such brave explorers, in the fight for progress, have challenged the status of traditions… whether those customs are right or outright dangerous.

That’s not to say that inertia doesn’t play an important role when transitioning new concepts into medical practice. The FDA has given us many recent examples of drugs rushed to market without sufficient scrutiny causing harmful results, even patient deaths. Either could have been mitigated or prevented by stricter adherence to protocol. Even now, the necessity of arterial stints is being questioned in angioplasty after many years of development and “improvement.” Questionable practices and procedures appear to be as difficult to halt, as helpful ones are to introduce. This is where one must distinguish between the habitual dogma of well-conceived best practice, and the restraint to not rush a new, but sound, medical idea into the mainstream.

Most importantly, though, when the keepers of medical knowledge reject change and new understanding, stagnation and dogma follows. When that dogma persists for its own sake (to protect reputation, or worse, only to sustain tradition or financial interests) it then becomes dangerous and sets up the high probability for sub-standard patient care. History abounds with examples.

One of the best-known examples is when Ignatz Semmelweis introduced the idea of surgeon hand washing with a disinfectant. Survival rates from amputations as well as childbirth improved dramatically. Semmelweis was fired and chastised by the medical establishment and ultimately driven from the profession. Now the Doctrine of Semmelweis is unquestioned. Similar accounts can be numerous. We can forward in time, for more examples, to that of Barry Marshall who brilliantly conceived that bacteria caused stomach ulcers and gastritis. Rebuked for years by the practitioners of established dogma, Marshall won the 2005 Nobel Prize along with Robin Warren for discovering the true cause and the cure of these ailments.

A more contemporary example is a recent article from Texas that illustrates the issue of entrenched dogma harming not only the quality of medicine, but also that of patient care. This article frames the persistent problem and clearly demonstrates that education doesn’t necessarily equate to enlightenment. Published in a popular community newspaper serving the greater Austin, Texas area [“An Everyday Struggle,” Amy Fowler, Hill Country News, April 6, 2007], the article described the plight of a young man with chronic Lyme disease and his continuing dilemma in not being able to access competent medical treatment locally, or anywhere in Texas, for that matter.

In the interest of being fair and balanced, the reporter also interviewed an infectious disease doctor affiliated with a clinic that is part of the prestigious Scott &White hospital system based in Central Texas. Scott & White is a “Top 15” teaching hospital in America and one of the top 100 hospitals.

Dr. Lisa Cornelius, M.D., M.P.H., an Assistant Professor of Internal Medicine, makes numerous “party line” statements that one would expect of an Infectious Diseases Society (IDSA) Member. But then she goes on to reveal her lack of independent study on a subject that should be at her command.

For instance, her assertations that, “Chronic Lyme generally doesn’t exist”, and that for those who show symptoms after treatment the preferred term is “late Lyme” are clearly unsubstantiated if one reviews all the current research, not just the research supported by the IDSA. Previously Lyme was staged into three phases: I, II, and III. It was later recognized that the more descriptive terms of acute, disseminated, and chronic Lyme served to better distinguish patient symptoms and presentations.

Even the term “disseminated” is considered too broad by most specialists as the process of disseminating the causative microbe occurs so rapidly that the microbial load is challenging to quantify, yet it is probably the more important measure of disease progression. The IDSA 2006 guidelines [Clinical Infectious Diseases 2006; 43:000–000], downplay the term of “chronic Lyme” to the point of denial, but it is handily used by the guidelines co-author, Raymond J. Dattwyler, and colleagues to justify their recent chimeric Lyme vaccine patent [U.S. Patent Number 7,179,448, February 20, 2007]. It appears that even the most dogmatic can sway from their path when a product marketing opportunity and potential profits present.

Furthermore, the good Texas doctor states that a Lyme diagnosis “can only be made if a patient presents with the “bulls-eye” rash . . . as well as other physical symptoms,” according to the IDSA’s guidelines. The article then goes on to cite Dr. Cornelius’ observation that she sees very few cases of Lyme “because it’s not here.” The reporter explains that this means the causative spirochete has not been isolated in the local ticks of Texas.

Doctor Cornelius, Lyme is here. The Texas Department of Health (now the Texas Department of State Health Services) identified Lyme disease in Texas in 1984. Even by federal CDC standards, most of Texas is Lyme endemic. In fact, Lyme has been reported in all of the state’s eleven public health regions. This writer and many patients he knows are painfully aware that Lyme and other tick-borne diseases were in Texas long before 1984.

The writer is also personally aware of two families in the Hill Country that are each four generations deep with Lyme diagnosed by knowledgeable clinical specialists. They were infected on their rural agricultural properties, and there is strong suspicion that the youngest patients have congenital infection. Other Texans, including this author, experienced symptom onset at an early point in their lives, long before ever leaving the state. Yet, diagnosis and treatment resources within the state grow ever more elusive to the point that they are now virtually nonexistent because so many frontline physicians succumb to the propaganda that there is no Lyme in Texas.

Patients in Texas, including the region you serve, succumb principally to Lyme borreliosis infection due to two sub-species of the Borrelia bacterium: Borrelia burgdorferi and Borrelia lonestari. Infection caused by burgdorferi can often be supported with positive serology. Diagnosing infection with lonestari, which causes Southern Tick-Associated Rash Illness (STARI), is problematic, as no specific serology exists. The bacterium may be detectable through DNA testing of tissue samples, but this kind of testing can also be elusive due to the inability to test tissues and organs where the pathogen resides.

In either case, diagnosis is always made on a clinical basis although testing can support a diagnosis of infection from burgdorferi when evaluated by a knowledgeable practitioner. Knowledgeable practitioners also know to ignore negative tests when symptoms and history dictate a probable cause. In either case, burgdorferi or lonestari, the diseases are reportable to the state which classifies both as Lyme disease. Fortunately, both illnesses usually respond to antibiotic protocols, which are adapted to each individual patient’s needs and sustained until symptoms are in remission.

Dr. Cornelius, the university where you completed your undergraduate studies, and the one at which you now teach, have a number of very knowledgeable faculty researchers who study ticks and tickborne microbes. Unfortunately, there continues to be no apparent communication among most clinicians and these expert researchers.

Experienced treating clinicians are very familiar with actual statistics from the literature that indicate that only 35% to at most 50% of patients experience an erythema migrans (EM) rash. Among those that do, approximately only 10% show the “bulls-eye” characteristic so often erroneously claimed to be required for diagnosis. The false belief of requiring that the diagnosing physician must witness the EM rash to make a valid diagnosis is not unique to Texas. In making your dismissive comments, you rely on and quote “the textbook” for infectious disease, Mandell’s (et al) Principal and Practice of Infectious Disease(s). You read that Lyme is primarily in the Northeast, Midwest, and Western regions of the U.S. You then conclude that Texans with the disease most likely contracted it in one of those regions.

Again, Dr. Cornelius, those regions have been known to be highly endemic for Lyme and other tickborne diseases for at least 30 years. The first U.S. case documented in the medical literature was in Wisconsin in 1970, not in Connecticut where late arriving investigators from Yale claimed the discovery prize. Borrelial infection has now been documented in all 50 states. The information you quote is trite, made even more so by the fact that the world body of medical literature has recorded for 125 years various manifestations and technical details of Borrelial infection, now on six continents. If you are going to speak as a medical expert on Lyme disease, then at least be personally familiar with its history and range.

As to where Texas patients were infected, I have already addressed the existence of in-state exposure. Surely, some patients were infected by traveling to more endemic regions, and others infected elsewhere have chosen Texas as their home. Still others have indeed been infected in Texas. Ticks do not recognize political boundaries, nor do the migrating birds and animals on which they travel and from which they fall en route.

The issue is of interest if ever the data could be assembled for epidemiological study. However, it really bears no weight in the argument for experienced and accessible healthcare for the patients that are here, regardless of where they were infected. It is your challenge, indeed more particularly your obligation, to provide that healthcare. Your oath commands you not to blindly follow the entrenched dogma of an organization that has been shown to cull the literature which supports their point of view and ignores those whose research and clinical experience have given thousands of Lyme patients their lives back.

Dr. Cornelius, you and Scott & White have the opportunity, and the responsibility, to provide a much needed and important resource to Texas, and the greater patient community, by becoming a leader in the diagnosis, treatment and clinical research of Lyme borreliosis and related coinfections. The organizational components and facilities exist at Scott & White. The Scott & White leadership and its capable physicians have only to open their eyes to the need, and open their hearts and minds to the great benefits and possibilities that would further the institution’s national reputation for excellence reached through commitment to patient care. Texans deserve the best standard of care. Will you take the challenge?