WHAT IS A LYME DISEASE LITERATE DOCTOR?
By Alain Mass, M.D.
A lot has been said and written about Lyme disease literate doctors who dare to go astray from the standard of care to diagnose and treat Lyme disease according to their own criteria. Blamed to over diagnose Lyme disease at the risk of missing the right diagnosis, doctors and media raise the concern of useless and potentially dangerous antibiotic treatments. Who are these Lyme literate doctors? Are they pioneers, advanced-guard doctors or marginal, opportunistic, unreliable and potentially dangerous physicians?
There is no specialty for Lyme disease other than that of Infectious disease. In the absence of board certification, none is allowed to be called a specialist in Lyme disease. Hence, the vague term of Lyme literate doctor which literally means, according to the dictionary, able to read and write about Lyme disease. Who is a Lyme disease literate doctor? Whoever reads the medical literature on Lyme disease and gets educated about the disease and treatment can be called Lyme disease literate doctor. The International Lyme and Associated Diseases Society (ILADS), however, educates and trains physicians.
When I was 3 years ago at the ILADS annual conference, a lecturer asked the audience full of hundreds of physicians: “ Who had personally Lyme disease or a family member with Lyme disease; raise the hand”. All the audience rose the hand. Where Lyme disease literate doctors come from is unfortunately an easy question. Physicians who have been directly involved in one disease, Lyme disease or not, tend to go straight to the source of knowledge, meaning the medical literature to get a better understanding but also to know all options of diagnosis and treatment. The main motivation, here, however, comes from a break in the trust in medical authorities because of treatment failure, disagreement with the diagnosis, especially when it involves a life-long psychiatric condition and treatment or a sentence of hopeless condition, often made of pain, handicap and medications for a family member, oneself or patients we really care for.
The standard of care defines the proper method of diagnosis and treatment as it is established by the medical leading authorities and accepted by all. The Standard of Medicine, in turn, represents the professional medical conduct as transmitted by medical schools over the generations. The standard of Medicine does not require good results but thoroughness, rigorous methodology, devotion, care, and compassion. The standard of Medicine will stay forever. The standard of care changes as science progresses.
Lyme literate doctors approach the diagnosis of Lyme disease by history as described in the medical literature and with the basic medical methodology where each symptom is characterized according to its intensity, time, location, progression, response to food, medications or environment. A systematic review of all the organ-systems finds many symptoms that are also characteristic of Lyme disease, even though not spontaneously disclosed by the patients, maybe for the simple reason that they do not relate all of them to the same problem. Quite often Lyme disease patients approach a doctor with one, two or three symptoms. The review of systems most of the time reveals 10 or more other symptoms. Cognitive and psychological disorders like brain fog, memory impairment, new onset of difficulty focusing, anxiety, new onset of OCD, irritability, depressed mood, etc… are rarely disclosed by patients. Not one symptom, aside from the bull’s eye rash (erythema migrans), is diagnostic of Lyme disease. The medical literature, however, does confer a strong correlation between certain symptoms like facial paralysis, headaches, migratory joint pain and Lyme disease. The pattern of symptoms is even more suggestive of the disease. Typical Lyme disease symptoms are unpredictable, intermittent, fluctuating, not affected by time, location or exertion and may improve with antibiotics. It is the association of different organ-systems of such symptoms and the exclusion of all other possible medical conditions that, ultimately, allow Lyme doctors to consider Lyme disease despite the absence of a positive Lyme disease blood test.
Since the early description of Lyme disease by Allen Steere, the triad of neurologic manifestations of Lyme disease, which combines meningitis, cranial neuritis, and radiculoneuritis, was already remarked as a clinical hallmark of this disease. I saw patients who were diagnosed with migraine by neurologists. I verified the Allen Steere’s triad if they had meningism (tension-type of headache with light sensitivity), cranial neuritis (facial numbness or paralysis, dizziness, hearing or visual disturbances), or radiculoneuritis (pins and needles feeling, numbness, muscular weakness, shooting pain..) None of the neurologists asked all of these questions. The patients admitted having some of these associated symptoms. The blood test confirmed Lyme disease. It is very common for physicians to order a Lyme disease blood test for joint pain and to rule it out based on a negative blood test. Maybe because physicians rely so much on the blood test that the need to ask whether the joint pain is migratory or not is felt not so necessary. Most of the Lyme disease patients I saw, if not all of them, did not have a complete review of systems performed by their physicians. The reason is understandable. A thorough review of systems takes at least 45 to 60 minutes. Unfortunately, the health insurance-based medicine does not allow physicians to take time with chronic sick patients. How to connect the dots if there are no dots? The dots, however, exist but not sought.
The diagnosis of Lyme disease, according to the standard of care, without a positive blood test, cannot be made. Patients see multiple physicians, leaders in their field and are left without diagnosis other than psychosomatic disorder or fibromyalgia. One patient saw eight infectious disease doctors. None of them thought of Lyme disease. A ninth one made the diagnosis of Lyme disease. No one thought of co-infections. She was also positive for Brucella and Rocky Mountain Spotted Fever. She was, however, already emotionally broken. She was sobbing trying to convince me that she was not psychiatric what many other doctors tried to convince her.
Is it unreasonable to diagnose based on clinical grounds because of the risk of overdiagnosing? The current standard of care that follows the IDSA guidelines, endorsed by the CDC, that mandates a positive blood test result to authorize the diagnosis of Lyme disease is based on a study that was published in 1993 by Dressler and colleagues. (Western blotting in the serodiagnosis of Lyme disease. Dressler F, Whalen JA, Reinhardt BN, Steere AC., J Infect Dis. 1993 Feb;167(2):392-400). It is interesting to note that Dressler tried to prove the accuracy of the Lyme disease blood test by matching positive blood test with patients that he diagnosed based on symptoms.
It is also interesting to see the source of the rule of a minimum of bands to diagnose or to exclude Lyme disease. Dressler’s study, at the source of the current IDSA guidelines, writes: “we selected the minimum number of IgM or IgG bands needed to obtain 99% specificity”. Dressler’s study concludes: “ We conclude that the western blot can be used to increase the specificity of serology testing in Lyme disease”. Higher is the specificity of a test, higher is the chance to have only true positive but also the risk of having false-negative test results. In plain English, it means that not being able to confirm a disease does not mean that the disease does not exist. The IgM ratios of 2 out 3 and IgG ratio of 5 out of 10 are not relevant to the sensitivity but to the specificity of the tests and, therefore, cannot be used to rule out Lyme disease but only to determine who unquestionably has Lyme disease. The distinction is important because it authorizes the benefit of the doubt.
In times of controversy or when the treatment fails to relieve the patient, or when the clinical judgment conflicts with the conclusion of studies, there is an ethical duty not to rely only on the position or titles of authors but on a critical reading of the full study. What were the criteria of inclusion, and of exclusion? and so forth. The groups chosen by Dressler’s study to represent the individuals free of Lyme disease came from random patients who visited a clinic for vaccination and from a group of chronic fatigue syndrome patients. No Lyme disease screening questionnaire was used to verify the absence of symptoms compatible with Lyme disease. Chronic fatigue is, however, a common symptom of Lyme disease and chronic fatigue syndrome is still an ill-defined disease.
Over-diagnosing is a real concern but under-diagnosing is a concern, as well. What is more concerning is a question. The morbidity of a life-long psychiatric treatment, or pain-killers or anti-inflammatory drugs and the degradation of quality of life due to chronic pain and/or disability in long term may definitely be more concerning than a few months of antibiotics. The exclusion of all other medical conditions is an essential part of the diagnostic approach of Lyme doctors. In fact, a classic Lyme disease patient is a patient who saw 10 to 15 doctors with normal workup but without satisfying diagnosis or treatment.
Some raise the concern that Lyme disease literate doctors, by overdiagnosing, may give unnecessary antibiotic treatment. While according to the CDC and IDSA, a positive Lyme disease blood test, in the presence of a few clinical manifestations suggestive of Lyme disease, is diagnostic of Lyme disease and justifies an antibiotic treatment, Lyme literate doctors will consider the diagnosis of Lyme disease only after a strong clinical correlation. A positive serological Lyme disease test only testifies of an immune response to the exposure of the Lyme bacteria that may have happened in the past. Lyme disease doctors have brought to clinical practice from medical research new knowledge of conditions that may imitate Lyme disease that are even not known to all infectious disease doctors like mold and heavy metal toxicities, environmental illnesses, porphyria, genetic-induced detoxification pathway blockages, electro-magnetic frequency hypersensitivity, PANDAS and PANS, mast cell activation disorder, limbic system dysfunction etc…. We arrive at the paradox where about 50% of individuals who truly suffer from Lyme disease have a false negative serological blood test for Lyme disease while some others have positive Lyme disease test but remain without symptoms or suffer from other conditions in combination or not with Lyme disease. Only a clinical correlation can make sense of a positive test.
Relying solely on blood test may lead either to deny an existing Lyme disease or to treat with antibiotics conditions that could have been treated otherwise.
If doctors help patients to heal, to take away the pain, handicap or any lingering mental suffering there is no place for controversy and for Lyme disease doctors. When, however, patients do not get better despite diagnosis and treatment given by expert physicians, when physicians admit not to understand, when patients get referred from specialist to specialist without resolution, when patients or parents refuse the diagnosis of anxiety, depression, psychosomatic or psychiatric disorder or of fibromyalgia, patients may then consider that other opinions exist. The use of antibiotics beyond a period of one month, strongly not recommended by the CDC, has to be weighed against the chronic use, sometimes for life, of painkillers, anti-inflammatory drugs or psychiatric medications and the emotional burden of an ill-defined chronic disease in the absence of any satisfying diagnosis.
How to define a quack doctor? As long as the standard of Medicine is not respected, whoever may be the doctor, Lyme disease literate doctor or not, the question may be raised. Respecting the standard of care does not mean that the necessary time, thoroughness, and interest were given to the patient. Dismissing a chronic sick patient to his or her despair because of a negative blood test without a thorough review of systems is not in respect with the standard of Medicine. Clinical judgment based on a rigorous methodology and peer-reviewed medical literature may conflict with guidelines and did it in the past numerous times enabling Medicine to progress. Disdain and prejudice vis-a-vis healthcare practitioners may not ultimately help patients. Dr. Alexander Fleming wrote,
“Penicillin sat on my shelf for twelve years while I was called a quack. I can only think of the thousands who died needlessly because my peers would not use my discovery”.
The message of the Lyme disease literate doctors goes way beyond Lyme disease. In times of controversy or when the treatment fails to relieve the patient, or when the clinical judgment conflicts with guidelines, algorithm-based recommendations or the mere conclusion of studies do not suffice. Ideally, denying Lyme disease or criticizing Lyme disease literate doctors should be based on the same level of precise clinical description. The best criticism against Lyme disease literate doctors would be to answer their questions other than by Lyme disease. For example, what other than Lyme disease may cause tension-type of headache with light sensitivity with intermittent pins and needles, numbness, weakness, poor balance, back pain along with migratory joint pain with intermittent mood and cognitive disorder that improve with antibiotics in a patient with a negative Lyme disease blood test but living in an endemic zone after exclusion of all other possible medical conditions?
Bertrand Russell wrote that evidence-based Medicine should remain our slave and not our master. In a similar vein, opposing a number of bands as sole criteria to diagnose or not Lyme disease to a well constructed clinical case strong of the exclusion of all other possible medical conditions buries clinical judgment, the art and spirit of Medicine. Underlying the Lyme disease controversy is the conflict between science and clinical skills. What should prevail? Do physicians have the legitimate right based on medical literature of otherwise to discuss the science of medical leaders without being pointed out as quack or dangerous? Maybe the principal message of Lyme disease literate doctors is not specific to Lyme disease but is to say that the clinical diagnosis of Lyme disease is underestimated if not ignored because the clinical evaluation, in general, has been neglected in Medicine due to the constraint of time and has been supplanted by testing. A reliable clinical diagnosis takes time. Health insurance-based system does not allow physicians to practice Medicine as taught in medical schools with chronic or complex patients. There is no more time to spend with the patient, to listen, to go methodically through a review of systems that may take one hour. In these conditions, there is no time to research the medical literature for all cases and the blind trust in guidelines is a necessity until the patient becomes our spouse or ourselves, our child or a patient we really care for.
Alain Mass, M.D. Board Certified in Family Medicine Montebello, NY Tel: (845) 623-0047 firstname.lastname@example.org
Wonderful article by Dr. Mass which points out the limitations of the health-insurance based system (managed care) which is not giving doctors the proper time required to make thorough and accurate diagnosis of chronic illnesses – which includes Lyme/MSIDS. Due to this, doctors are relying on inaccurate testing which is missing many patients who are infected but test negative.
The health-insurance based system, which normally allows 10-15 minutes with each patient is not going to begin to have the time required by infectious disease doctors to delve into some of the issues Dr. Mass presents that imitate Lyme disease including: “mold and heavy metal toxicities, environmental illnesses, porphyria, genetic-induced detoxification pathway blockages, electro-magnetic frequency hypersensitivity, PANDAS and PANS, mast cell activation disorder, limbic and system dysfunction etc….”
Favorite quote by Dr. Mass:
“We arrive at the paradox where about 50% of individuals who truly suffer from Lyme disease have a false negative serological blood test for Lyme disease while some others have positive Lyme disease test but remain without symptoms or suffer from other conditions in combination or not with Lyme disease. Only a clinical correlation can make sense of a positive test.”
Welcome to the topsy-turvy world of Lyme/MSIDS.