Accepting New Patients Today, Call (202) 955-0003
The vigorous and sometimes vicious debate drones on among medical professionals and their patients over whether or not persistent or chronic LD exists, and if so, to what extent it is accurately diagnosed and how it should be treated. The debate lies with whether a number of chronic symptoms can be ascribed to LD. The argument is confounded significantly by the fact that we can not easily identify Bb in tissue or blood and that serologic studies are poorly standardized and considered generally insensitive, particularly if one has received antimicrobial therapy over a length of time (134). The traditionalists have the proverbial ear of today’s medical publishers and, at least in some of the literature we have reviewed, consistently downplay the possible role of persistent LD, often in a condescending, haughty manner, as if one were trying to discipline a willful child who had opinions of their own (135,136). Through self-fulfilling and circular logic, and through repetitive and boorish arguments they consistently attempt to point out the lack of proof for persistent infection and the lack of evidence for prolonged use of antimicrobials in this setting. On the other hand, their explanations used to dismiss persistent or relapsing Bb disease as the etiology for many patients with ongoing unexplained, disabling symptoms, is hardly scientific or convincing. Generally, they simply refer to this group as having “some sort of prolonged immune abnormality” or “depression”(136), as if these explanations provided a satisfying resolution to our understanding of these issues, much less a template for further study and change. This is hardly a gratifying explanation, particularly if you happen to be a neuroborreliosis patient with major cognitive loss, in association with racking pain, polyneuropathy and fatigue so severe you don’t consider life worth living.
In essence, the idealogues in question are calling for evidence-based medicine and by definition this assumes we know everything that is important to know about neuroborreliosis. We all agree that evidence-based platforms are preferable when possible. The problem, of course, is that we have only scratched the surface where scientific and clinical information on LD is concerned, much less other major areas in the life sciences. We therefore believe that it is unconscionable and wrong to “close the door” on new ideas when it is obvious that our patients’ conditions remain unremitted and unresolved, and most continue to suffer. The New England Journal Medicine is acknowledged as a bastion of science, but they and other medical journals are failing both physicians and patients concerned with the spectrum of Bb associated disease. When they rush to print articles on LD, as occurred with the early release of Klempner’s article in 2001, claiming the premise that great science has been gifted to us, we are offended (137). We hold these medical editors accountable for their permissive propagation of one dimensional and highly restrictive views on Bb infection, and, furthermore, indict them as guilty of being ‘keepers of the dogma’ for not publishing letters of dissent sent to the editor in reference to the articles.
In making the case for persistent infection with Bb, we start by drawing on our clinical experience with over 2000 patients. The validation provided by the Herxheimer effect (see below) and the clinical gains made by our patients on therapy are irrefutable and well documented in Jemsek Specialty Clinic records. As discussed above, through careful recording of patient history, we believe we have made a strong clinical case for Bb persistence, whether it is in the form of ongoing symptoms or a reactivation event. Through all of this, our learning experience has been intense and quite enlightening. The clinical improvement in many of our patients with previously disabling conditions has been at the same time remarkable and gratifying. For this, we are truly humble and thankful.
We believe that the clinical and immunologic considerations discussed heretofore are as compelling and valid as anything published by those with opposing views. Valid immunologic information in persistent LD is scarce and we must emphasize the fact that the complex interaction between Bb and the human host is just now beginning to be appreciated.
What is known about the biology of Bb leads one to certain conclusions. As discussed earlier, some confounding elements of Bb infection include the existence of Bb as multiply poorly characterized strains with variable and inconsistent antimicrobial sensitivity patterns. Bb replicate very slowly in comparison to other bacterial species (138) and this has significant implications for treatment guidelines. These same organisms demonstrate requirements for a microaerophilic environment (68,69), and manifest a documented pleomorphism, possessing the ability to transform from one state to another under various conditions (86). Bb may exist in the host in various antigentically diverse states (spirochete, cell wall free or L form, or a cystic form) (87). In our opinion, these characteristics have a profound effect on the choice and length of antimicrobial therapy (see treatment section). Bb has already been recognized to persist in human cerebrospinal fluid for weeks to months (139) and in human tissue for years (140). Failure of antibiotic therapy, particularly monotherapy such as doxycycline or ceftriaxone (Rocephin) when administered for short periods, should then come as no surprise. Furthermore, all seem in agreement that laboratory detection and monitoring of Bb is grossly inadequate as it exists today. Logically, it follows that some patients with Bb infection will remain undetected for extended or indefinite periods of time if we insist on current methods of laboratory confirmation of Bb infection to make a diagnosis.
Lyme literate MDs who base their treatment on history and physical findings, rather than relying on laboratory testing as it exists today, can easily overlook the inadequacies of our current serologic screening methods. Nonetheless, it is a major psychological hurdle for most of us to overcome when we have a situation in which we don’t have that laboratory confirmation for Borrelia infection tucked away somewhere in the record. This is a curse of modern medicine – a paradox that says that a man-made and therefore inherently imperfect evidenced-based entity such as laboratory medicine may prevail over the opinion of the experienced physician.
A major problem caused by the current laboratory criteria for LD confirmation is that physicians and other providers unaware of testing shortcomings will unintentionally mislead their patients. This practice is so common in the southeast US that patients presenting to our clinic have generally already been to a large number of physicians, including many who consult specialists at academic centers. These patients typically undergo extensive and oftentimes unnecessary testing and/or procedures without reaching a consensus diagnosis and, of course, without adequate therapy. On the other hand, we find that these patients frequently get the proverbial “cold shoulder”, usually from the academic consultant who “tunes out” once the possibility of Lyme disease is broached. We have interviewed countless LD patients who have gone through the academic referral process and who were humiliated at their interview on campus. Certainly in the Carolinas, at this particular time, this is most definitely the case.
Finally, the testing conundrum seems to play directly into the hands of unsympathetic (the kindest word I could conjure) insurers and disability managers who selectively cling to the archaic diagnostic laboratory criteria listed in their respective cookbook manuals that suit their purpose for denying medical coverage for diagnosis and treatment
When laboratory criteria for Bb infection are not fulfilled, we have sometimes experienced that the insurer finds it an easy matter to deny benefits for our patients. On these occasions, we believe we are witnessing a situation in which businessmen and physician administrators practice medicine from afar and without valid license. Furthermore, they dictate conditions of medical care and outcome without fear of any immediate and personal consequences for their actions. They forget, as many have, that medicine cannot be scripted or practiced through algorithms. As clinicians, we are constantly humbled by our shortcomings in knowledge and understanding of the practice of medicine. We are constantly learning. It is said “half of what we revere as the truth in medicine will be proven wrong in the next 30 years” (141). The standard joke is that we don’t know which half. We physicians are constantly reminded that the wonderful practice of medicine has always been about both science and art. Both are of critical importance, no doubt, as no one wants a fool for a physician. However, in my lifetime, I believe that the “art” will always outweigh the science. It means one has a gift for insight and knowledge of human behavior and the wisdom to know how to integrate the discoveries of modern science with the care of your patient. Above all, this implies caring and a will to grow from your experiences. The practice of medicine doesn’t have to be impossibly complicated. “Just listen to the patient and they will tell you what is wrong with them”, as Osler so aptly stated years ago (142).