Identifying Lyme Disease
The History of Medicine:
2000 BCE: Here, eat this root. It will make you strong.
1080 BCE: Throw out that root and drink this potion; it is better for you.
250 AD: Get rid of that potion; it is bad for you. Take this herb instead.
1910: Get rid of this herb and take this potion; it is more effective.
1950: That potion is bad for you; here, take this drug.
2000: That drug is no longer effective; here, eat this root.
How is it possible that an epidemic of tick-borne diseases could be spreading without getting the proper attention? How could patients throughout the United States continue to be desperate for help? To understand the answer to this dilemma, you need to understand the intricacies of Lyme disease and the constructs of the medical paradigm that doctors and health authorities work under.
First of all, we must look at the history of medicine. Medicine is a continuously changing and expanding field, and it is said that almost half of everything that we learn in medical school will usually be proven to be wrong every five to ten years. There are numerous examples of the undeniable blessings of modern medicine: antibiotics and other pharmaceuticals; new high-tech diagnostic machines and tests; groundbreaking surgeries; and public health initiatives have extended human life (most especially in infancy) and increased well-being in the general population. But along the way to modern medicine, some medical pioneers have been dismissed or even attacked for what others believed were their heretical ideas.
For example, consider Dr. Ignaz Philipp Semmelweis, a nineteenth-century Hungarian physician, who is now known as an early pioneer of antiseptic procedures described as the “savior of mothers.” Semmelweis made an important scientific observation: When he washed his hands before delivering babies, the women in his clinic did not die as often from puerperal sepsis (a bacterial infection that kills women shortly after giving birth) as those in another clinic in the same hospital, which had a death rate of 10 percent. When he shared this important observation with his colleagues, he was ridiculed. As patients abandoned his colleagues and begged to deliver in his clinic, he was ostracized by his medical society and driven out of medicine. He was committed to an asylum, where ironically, he died of septicemia only fourteen days later, possibly the result of being severely beaten by his guards.
Dr. Louis Pasteur was another example of a scientist who was ridiculed. It was years before his theory of the germ origins of illness was proven to be correct.
Helicobacter pylori were first discovered in the stomachs of patients with gastritis and stomach ulcers in 1982 by Australian doctors Barry Marshall and Robin Warren. The conventional thinking at the time of their research was that no bacterium could live in the strong acid environment of the human stomach. They also proposed that treatment with antibiotics rather than the practices then in use, which included stomach removal, were best for ulcer patients. Their discovery was ignored for almost twenty years, while patients had their stomachs removed because of bleeding ulcers, or were told to drink large quantities of milk, or were cautioned that their ulcers were due to stress alone.
There is a long list of other examples available for anyone who wants to explore the history of medicine. Many of these pioneers pushed the boundaries until the paradigm of that specific disease process was transformed. Are things different today? Have we learned to listen to those challenging the medical establishment? Certainly not with respect to Lyme disease and associated tick-borne disorders.
To understand Lyme disease, we need to go back to the mid 1970s, when portrait painter Polly Murray first noticed an outbreak of what had been called “juvenile rheumatoid arthritis” in the town of Lyme, Connecticut, that had affected her and her children from decades earlier. Dr. Alan Steere, a rheumatologist at Yale University, was called in to investigate the epidemic, as were researchers from the National Institutes of Health (NIH) and Rocky Mountain Labs. Dr. Willy Burgdorfer, a researcher at Rocky Mountain Labs, identified a microscopic spirochete, a spiral-shaped bacteria that resembles the one that causes syphilis. This was eventually identified as the causative agent of the newly identified disease, and the spirochete was named Borrelia burgdorferi (Bb) after Dr. Burgdofer’s discovery, and the related disease was called Lyme, after its initial outbreak in the town of Lyme, Connecticut.
Although patients may have had other manifestations of the disease, Dr. Allan Steere primarily investigated patients with rashes and rheumatologic manifestations, including hot, swollen joints, for the Connecticut Department of Public Health. He was instrumental in determining that many became ill in summer or early fall and lived in geographic clusters in mostly rural areas. He did recognize that patients were very ill and not just psychologically disturbed. But what caused this mysterious illness?
This mysterious illness was actually not a new discovery at all. Lyme disease had already been reported in Europe in the late 1800s, as a rash of the hands: Dr. Alfred Buchwald described a skin lesion; others in Europe and the United States reported the same lesion as part of a condition called Bannwarth syndrome, a triad of radiculitis (a pain radiating along a nerve), with Bell’s palsy (the sudden onset of facial paralysis), and meningitis (an inflammation occurring in the membranes covering the brain and spinal cord). In 1909, Dr. Arvid Afzelius described an expanding ring-like skin rash, later named erythema chronicum migrans, or ECM (in 1990, dermatologist Dr. Bernard Berger recognized that the rash was not chronic in all cases and renamed it Erythema Migrans or, simply, EM). Ten years later, Afzelius connected the disease with joint problems and speculated that they are somehow related to the bite of a tick. In 1922 the disease was found to be associated with neurological problems, and in 1930 the diagnosis further included psychiatric disturbances. A few years later, arthritic problems were added. In 1965 Dr. Sidney Robbin, a semiretired internist living in Montauk, New York, described expanding circular rashes that responded to penicillin treatment that appeared in conjunction with a peculiar type of arthritis that he named Montauk knee. Five years later, Dr. Rudolph Scrimenti, a Wisconsin dermatologist, published the first report of an ECM rash in the United States. As Dr. Robbin had observed, he too reported that the rash responded to penicillin.
No one, however, had put all the pieces together. And no one yet connected these symptoms to the patients who were so ill in rural Connecticut. Was this a new illness, and, if so, where did it come from and how should we treat it? By 1977, Dr. Steere was reporting a whole host of specific and often bizarre signs of this new disease, including fever, fatigue, headache, migratory joint pains, as well as multiple cardiovascular and neurological abnormalities. As the result of treating patients with antibiotics for (only) seven to ten days, many patients went on to develop other symptoms. It appeared that antibiotics just wouldn’t help Lyme patients. Perhaps Lyme was caused by a virus, or was an autoimmune disorder.
When you have been trained in a particular medical specialty, you see the world through certain lenses and diagnostic paradigms. A gastroenterologist, for example, sees the world through the lens of the gastrointestinal (GI) tract and tries to link up a patient’s symptoms to diseases known in their specialty. This is the same for neurology or infectious disease or, in the case of Dr. Steere, a rheumatologist, for diseases of the joints, which include autoimmune diseases. It is not that the thinking of these doctors and subspecialists is necessarily wrong, but it may be that their worldview only includes part of the whole picture. There is relative truth, and then there is absolute truth. When the three blind men are feeling the elephant, they each describe a different part. One describes the elephant as having a long, movable nose, another tough skin with thick legs and big nails, and the third might just describe a thin, coarse tail. Each has described a certain relative truth, and none is incorrect, but none of them have seen the big picture: It’s an elephant!
So it is with Lyme disease. The initial paradigm created for diagnosis and treatment of these patients was through a rheumatologist’s narrowly focused eyes. Soon the infectious disease doctors claimed Lyme disease as part of their turf.
I was trained as an internist to be a medical detective, with a wide diagnostic perspective: We have to know something about all of the medical subspecialties. The vision of an internist must be broad and inclusive of all possibilities, since his or her job is to diagnose patients to effectively determine who needs to be referred to subspecialists. An internist, therefore, will not necessarily have some of the inherent biases or diagnostic schema associated with subspecialists. As Lyme diagnosis and treatment fell into the domains of the rheumatologists and infectious disease doctors early on, a paradigm was forming based on the way these subspecialists viewed the world. In addition, traditional medical education has always taught doctors to find one cause for all of the patient’s symptoms. This is deeply ingrained in every physician’s education. We generally are not taught to look for multifactorial causes of an illness. Therefore, if a Lyme disease patient presents with thirty-five different symptoms, the established paradigm would be to try and explain these complaints according to the accepted medical model: one primary diagnosis. If the doctor could not find a single etiology, or cause, for your symptoms, it must be because it is psychological in nature, and you are crazy. Or the answer might be elusive because the symptoms can’t be understood in the HMO-dictated fifteen-minute time frame. Or perhaps the physician hasn’t looked hard enough, or just sees the world through one narrow diagnostic lens.
Let’s embark on a journey together as medical detectives to see how we might diagnose and treat one of the most pressing epidemics facing us in the twenty-first century.
GETTING TO THE SOURCE OF CHRONIC ILLNESS
Although solving such an enormous problem like multiple systemic infectious disease syndrome (MSIDS) might seem a very daunting, or even an unreachable, goal, as a physician I have found that communicating well with my patients is a key ingredient. Searching for clues by listening intently to their symptoms allows even the most seriously ill multisystem-affected patient to achieve greater health and wellness. After accumulating all of the necessary information from the patient, and reviewing the laboratory results, we need to blend medical knowledge with deeper intuitive wisdom.
Tell me again: What do you feel? When did it begin? What makes it better or worse? As I probe each time, their stories prompt me to search for new clues: The mystery unfolds through our dialogue. Of course, this technique doesn’t ensure that we can discover the answers for all the problems of all our patients all the time. Nor does it mean that this strategy will cure illnesses that have plagued patients for years (although this might be possible). But it does allow the medical detective to register some clue that hadn’t seemed important before.
The second piece of the strategy of being an insightful medical detective is attitude. And by this I mean developing a strong desire to benefit the patient who is suffering. We can achieve this by imagining exchanging ourselves with another and doing for them exactly what we would want done for ourselves. Rather than take an all-knowing physician stance, I believe the best medical strategy is developing a strong and unwavering compassion for others. Any success I have had in my practice rests on this guiding principle. Although this might sound like a new credo for modern medicine, it is, in fact, implied in the Hippocratic Oath that all physicians take. It has doctors pledge respect for human life, and to treat patients as fellow human beings, not medical conditions.
Adopting compassion as the foundation of our health-care system challenges the time-efficient models and financial incentive–driven perspectives of modern health care. Yet many patients, physicians, and insurance directors are unhappy with our current health-care system. Even patients with health insurance coverage suffer with chronic undiagnosed illnesses, physicians burn out, and health-care costs continue to soar in this unhealthy atmosphere. It is difficult to find satisfaction as a physician if you are rushing from patient to patient and are unable to find the time to develop a strong, heart-centered healing partnership with those who seek your care. Shifting from the head to the heart, where our compassion lies, can bring patients and physicians greater satisfaction, and it provides the essential motivation to get to the root cause of illness. This ultimately benefits the patient, the health-care system (as unnecessary and expensive tests are not performed), and the physician (as he or she experiences greater satisfaction and improved patient outcomes).
The U.S. Centers for Disease Control and Prevention recognizes that chronic illness may be a complex interplay of genetics, environmental factors, infections, and trauma. But in day-to-day practice, doctors often do not use this broad framework to understand and treat chronic illness. Usually, the HMO model encourages limited time for visits and referring patients to long lists of specialists who, if they get approval, will perform long lists of expensive tests. Yet these same insurance companies often place limits on medically necessary treatment options for economic reasons. Few physicians have the time to uncover the multifactorial causes of chronic illness. Most specialists are trained only to treat one small piece of the puzzle, one body system, or one category of causes.
I believe that the first piece of this paradigm shift must therefore be with primary care physicians. These first-line physicians must use a broader and more inclusive framework to break down chronic illness into layers by examining the mental, emotional, and physical aspects of each illness.
Then we must go even further as detectives and break these physical symptoms down into the anatomy of an illness, the biology of an illness, the biochemistry of an illness, the immunology of an illness, and the genetics behind the illness. Functional medicine and abnormalities in the biochemical pathways that drive chronic illness are a start. These often need to be examined to discover clues as to why the chronically ill patient has persistent symptoms. In medical school, doctors are not taught adequately about environmental medicine nor is the importance of what these toxins may do to the body emphasized, or how detoxification pathways work, how inflammatory cytokines (the protein molecules that are secreted by cells that can communicate with each other) cause sickness behavior, or how mental or emotional stress can negatively affect adrenal function, causing immune system dysfunction.
Physicians are trained to recognize and treat chronic infections, but many believe that the list of chronic diseases is limited to those like tuberculosis, leprosy, syphilis, chronic Q fever, or chronic viral infections, such as hepatitis B, hepatitis C, or HIV. If the medical paradigm that your doctor is working in is that other chronic infectious diseases are rare, then he or she will not look for them, nor will they find them. Yet if a doctor is smart enough to think about searching for them, the other problem he or she will face is that diagnostic tests are not necessarily reliable enough to make an accurate diagnosis.
Think of the chronic illness patient as someone with sixteen nails in his or her foot. Their physician might identify several nails in the workup, and treat those specific causes, but often, if they do not achieve a positive result by pulling out one of the nails, they believe that they have erred in the diagnosis. However, this does not mean they were wrong. If the patient still complains of pain, it means that there are fifteen nails left behind to explain the chronic foot pain. It is therefore essential to look further and find all of the nails causing the pain.
To begin with, each person’s symptoms need to be considered individually, and then collected and put into likely disease categories to try and find the common denominator. This is a process doctors call “the differential diagnosis.” Each chronic illness is complex, and its causes are likely interrelated. For example, a patient complains of night sweats. Let’s say that the patient is a thirty- or forty-year-old female who is not in menopause. After obtaining a history and performing a physical, the medical detective would identify the most common causes of night sweats. Is it tuberculosis or non-Hodgkin’s lymphoma? Is there a cough, hemoptysis (blood in the sputum), or weight loss, or has there been exposure to someone who contracted tuberculosis? A simple chest X-ray and tuberculosis test (PPD) could help rule out these two differential diagnoses while the physician checks the patient for hard, enlarged, nonmobile lymph nodes, which can be seen with a lymphoma. Has she been traveling to countries where she could have been exposed to malaria? Did the patient get a febrile illness while they were there? Examining a blood smear under the microscope (called a Giemsa stain) to rule out malaria could be helpful. Does the patient live in a tick-endemic area or has she traveled to one where she could have contracted babesiosis, which is a malaria-like illness? (Most people these days live in or have traveled to highly tick-endemic areas). Performing a Babesia titer (an antibody test), a Giemsa stain, a polymerase chain reaction (PCR) DNA test, or a fluorescent in situ hybridization (FISH) test of RNA, looking for Babesia would be helpful in this circumstance. Is the patient having hormonal issues even though they are young? Checking an FSH, LH, estradiol, progesterone, testosterone, and free-testosterone levels, as well as sex-hormone binding globulin (SHBG) would help rule out this possibility. Is she hyperthyroid? Is she suffering from weight loss, palpitations, tremors, anxiety, diarrhea, and sweats? Checking a full thyroid panel would be helpful. Has the patient undergone any recent trauma that might be triggering an anxiety disorder? By simply listing these six to seven most common differential diagnoses for night sweats and ruling out each one with a proper history, physical, and laboratory testing, answers can be found.
The three problems that I see most often that interfere with making such a diagnosis are: first, the fifteen-minute HMO model of medicine does not allow the time to think through the complexities of differential diagnoses. Second, while doctors are rushing to get to their next patient, they may not even ask the patient to tell them about all of their symptoms. Third, patients frequently don’t mention symptoms that they don’t think are important, or they forget to mention others. Good communication enables the treating physician to establish the proper diagnosis.
To ensure that I hear the full patient story I have a symptom questionnaire that I use with all of my patients. This questionnaire was developed years ago based on Lyme patients complaining of similar sets of symptoms. Without it I know that many important patient clues would be missing, and these are often the symptoms that are essential for the medical detective to make an accurate diagnosis.
We need to get to the source of the problems in medicine, because the world now more than ever is out of balance. The ancient adage “as above, so below” could now be applied to medicine in terms of “as without, so within.” When does the illness of the world become our own personal illness? When does our own personal illness impact the balance of the world? If we identify the source of illness within us, it also informs us about what is out of balance in the world, and perhaps can teach us how to remedy it.
For example, we have an epidemic of hypertension. Is that so-called normal aging, or is it a problem with hardening of the arteries from an improper diet and exercise program, or from chronic inflammation from an imbalanced orthosympathetic and parasympathetic nervous system affected by a lifetime of stress, with elevated levels of cortisol and epinephrine, and/or from elevated levels of lead getting into our bodies from the environment? I have tested several thousand people in my medical practice with chronic illness for heavy metals, and I have found that the majority have elevated levels of lead. Most doctors do not look for elevated levels of lead in their patients, since it is not part of the standard medical screen and laboratory testing and physical and wellness exam. Yet lead is getting into people’s bodies from multiple sources. We now find lead in the drinking water, there is lead glazing on plates, and there are elevated levels in seafood, and especially in shellfish. Lead is deposited in our bones during our lives and subsequently released back into the body as the bones break down with aging, osteopenia (lower bone mineral density), or osteoporosis. Lead has been linked to hypertension. So is hypertension a disease of normal aging? Or is hypertension perhaps due to a multiplicity of the above factors? If we properly diagnose and treat it, perhaps millions of people would not need blood pressure medication or suffer chronic kidney disease or kidney failure, strokes, heart attacks, or congestive heart failure. These chronic illnesses alone cost the health-care system billions of dollars and cause untold suffering for patients and their families.
Let us take another example. Is it normal to be losing your memory as you get older? Is it normal to have an Alzheimer’s epidemic affecting not only the United States but also the rest of the world? Or is it possible that there are multiple etiologies at the root of these conditions? We find that the majority of our Lyme disease patients with co-infections have severe memory and concentration problems. A beginning hint of the connection between infection and dementia can be found in a report from pathologist Dr. Alan B. MacDonald, who examined brain biopsies from the McLean Hospital (an affiliate of Harvard University) data bank from patients with confirmed Alzheimer’s disease (AD). His PCR analysis showed that seven out of ten of these patients had the DNA of Borrelia burgdorferi in their brain, the etiologic agent of Lyme disease. We also find that the majority of our chronically ill patients with Lyme disease and co-infections have been exposed to high levels of heavy metals, such as mercury and lead, and occasionally to aluminum. These also can cause memory and concentration problems, and can cause the production of elevated levels of free radicals, which can increase inflammation. Similarly, we are exposed to hundreds of environmental chemicals every day that are fat soluble and, therefore, are deposited in the brain. These can and do affect cognitive processing. We know that an inflammatory process is at work in Alzheimer’s disease that helps to drive the production of amyloid (an insoluble fibrous protein that in excess can lead to neurodegenerative diseases). Are Lyme disease, co-infections, environmental toxins, and heavy metals some of the agents causing the severe memory and concentration problems currently being diagnosed as Alzheimer’s disease? If we include patients who have undiagnosed B12 deficiency, which would be picked up by doing blood tests for B12 and methylmalonic acid levels, and/or patients who suffer from undiagnosed hypothyroidism, we have enough causes for an epidemic of dementia in the general population.
I have seen elderly patients with a diagnosis of dementia, with cognitive deficits, given drugs prescribed for Alzheimer’s, such as Aricept and Namenda, which slow down (but do not reverse) their cognitive decline. But I have seen improvements in their cognitive functioning after treating them for chronic tick-borne infections, by detoxifying them of fat-soluble toxins with glutathione, by using oral chelating agents to remove mercury, lead, and aluminum, and by identifying and treating B12 deficiencies and/or hypothyroidism.
Identifying the multifactorial causes of chronic illness is the next most important paradigm shift in medicine. We cannot simply name an illness without looking into its multifactorial causes, or we will be leaving a legacy of chronic illnesses for future generations. Epidemics of autism, cancer, strokes, heart attacks, hypertension, diabetes, obesity, autoimmune diseases, mental illness, chronic fatigue syndrome, fibromyalgia, and Lyme disease with co-infections are just some of the ongoing epidemics. This should not be the normal fabric of illnesses woven through our society. We can do better.
THE ESSENTIAL TOOLS OF THE MEDICAL DETECTIVE
A wise man once said: “There are two mistakes that one can make on the road to truth: not going all the way, and not starting.” When I was finishing my medical training at the Free University of Brussels medical school, I asked my spiritual teacher to tell me what he believed was the most important component for the practice of medicine. He said: “It is the quality of compassion.”
When I asked what he meant, he said: “When you are building a house, you must have a proper foundation. Without a proper foundation, that house will not stand. The foundation which ensures that you will benefit yourself and others is loving kindness and compassion. Love is wanting other people to be happy. Compassion is the wish that other people be free from suffering. If you exchange yourself with others and do for them exactly that which you would want done for yourself, everything will go well.”
The first most essential tool for the medical detective is therefore compassion and proper motivation. How does one develop those qualities? Most health-care providers have the wish to help others, of course. However, for many of us, on some days, we approach illness as a bother, a challenge, a duty to heal rather than as a loving, caring parent would, who does everything to relieve the pain of their suffering child. I have personally witnessed parents who have taken their children from doctor to doctor, desperate to find help for their children. A primary care doctor who approaches each patient as a parent would their own sick child will surely be more successful than one who is not as strongly invested in the outcome, or who feels that their job is as a gatekeeper for a referral to a more experienced subspecialist. Patients can feel when doctors truly care. That in itself is a healing experience.
To develop these qualities of loving kindness and compassion, we need to take some time every day to reflect upon them, so that we can integrate them into our lives. One basic skill taught in different meditative traditions is the technique of taking and sending. In this visualization one imagines that he or she breathes in the suffering and ills of others, which comes into our body through the nose as a black smoke. It goes directly into the heart and is transformed there, with love, into a white light. This then leaves through our nose and heals others, relieving them of their suffering and bringing them happiness and joy. I have been assured by those diligently practicing the technique over the years, and from my own spiritual teachers, that no harm actually comes to our bodies by doing such a visualization, and that the benefits are immense. It would appear that taking several minutes a day to meditate in this way and develop these qualities creates a strong foundation for us to help others. Wanting to be of service and help others is not only a noble philosophy but elevates us while simultaneously benefiting our patients. Compassionate self-sacrifice and putting others above ourselves allows the practice of medicine to become a spiritual path to the divine.
This technique of taking and sending is a way to exchange yourself with others and develop the important qualities of loving kindness and compassion that are necessary not only to be a healer but also to be healed.
Those of us who work with the sick have also been wounded. This practice of taking and sending can connect us with that quality of a soft open heart that joins us to our own humanity. And to the humanity of others. This moves us to practice medicine not only from the head but also from the heart, from a deep place of caring where we want the best for others. And when we do this, often the best outcomes result. Caring about others and wanting to relieve their suffering are the essential keys. According to my teachers, all the benefits seen in the practice of medicine emanate from this one source.
The next most important tool for the medical detective, which naturally follows from deep caring, is the giving of full, undivided attention to the patient. We must take the time to listen fully with empathy, or we cannot possibly discover the clues to the patient’s illness. Full, undivided attention is also experienced as an act of love, and love heals. To give full attention means that we must be able to stop our own busy minds for an instant. This is not easy for most of us. We are running on the treadmill of life, with barely enough time to catch our breaths. This practice of giving full, undivided attention without letting our minds wander is one of the first foundation practices of meditation, “calm abiding.” We must train our minds to stay in one place and not follow thoughts of the past, or thoughts of the present, or thoughts of the future. If we can train our minds in this way, we have the possibility of developing an inner calm. We will not be swayed by strong mental currents that frequently lead us to obsess about past failures or difficulties, nor live in fear about a future that has not yet happened. We can learn to stay in the present moment and simply be in peace. The practice is to simply listen, with full, undivided attention, to our patients’ stories. This is a very challenging task for most medical providers, yet the answers to the patient’s illness often emerge while sitting in a space of deep listening and deep caring. Once in this stance, the medical detective collects details of patients’ illnesses and processes those facts using left-brain logical reasoning. Next he or she can calm their mind and rest in an open, undistracted meditative space, where right-brain intuitive knowledge can be accessed. I have found that combining left-brain logic with right-brain intuition can lead to better patient outcomes.
Most patients with chronic complex illnesses come into my office with a stack of medical records and a long list of complaints. By meticulously reviewing their records and using the questionnaire that I describe later to further delineate the full extent of their symptoms, I am ensuring that I am complete in obtaining a proper history. This questionnaire also provides me an opportunity to formulate the most probable differential diagnoses while interviewing the patient. Taking a proper history from patients, with these highly complex conditions, who may have been to ten to twenty doctors in the past several years, usually will take me at least one hour. It usually takes between two and three hours with each new patient to complete a social history, family history, and environmental exposure history, and to review their symptoms, conduct a complete physical examination and assessment, and devise a treatment plan. It is obvious that the HMO model of medicine (approximately one patient every fifteen minutes) is not well-suited for patients with complex chronic illnesses.
When I arrive at the final assessment and plan, I try to make sure that every symptom on the questionnaire that the patient circled has one or several potential differential diagnoses. This ensures that each symptom receives the appropriate testing, and has an appropriate plan. Often patterns emerge while I am reviewing the symptoms. Often a gestalt appears suggesting the most probable diagnoses for the patient and the most probable direction in which healing will be found.
These tools for the MD (medical detective) may seem simple, but they work. As we try and construct a new paradigm to deal with chronic illness we will see that there are several distinct advantages to this model. My health-care colleagues are experiencing burnout at high rates. I believe that the motivations and tools I review in this book can help us rediscover greater joy in helping others and in striving to help those who have not been helped in the past. Cultivating the qualities of loving kindness and compassion are not just paths using the head but also paths of the heart. The balancing of the masculine and feminine energies of both head and heart can lead us to greater joy and satisfaction in the practice of medicine, emotions so often lacking in our fast-paced medical environment. Patients seem to like this approach, too!
Finally, it turns out that this model is quite comprehensive in its scope, and it has the potential to lead to diagnosis and treatment in the shortest period of time while costing the health-care system the least amount of precious resources. Using four tools—proper motivation; listening fully with empathy; using the questionnaire to evaluate patients’ complaints; and then developing differential diagnoses using the Horowitz sixteen-point chronic disease map—has the potential to offer hope to those who have suffered for a long time, and to offer them a chance for healing. I believe that these are the tools vital for every medical detective who is seeking the road to truth.
THE HOROWITZ LYME-MSIDS QUESTIONNAIRE
An Essential Tool in Determining the Probability of Lyme Disease and MSIDS
My patients typically fill out the following symptom questionnaire while in the waiting room. I then use the document to go through the thirty-eight items in Section 1 in great detail and get expanded information on each of the symptoms to develop a comprehensive set of differential diagnoses. This essential questionnaire is based on one developed by Dr. Joseph Burrascano when he started treating Lyme disease patients. He found, and other physicians have verified, that there were a number of common patient symptoms, and these complaints make up the items of the questionnaire.
You can use the following questionnaire to determine the probability of a Lyme-MSIDS diagnosis for yourself. I also highly recommend that new and experienced physicians use this as a screening tool to determine if their patients might have Lyme disease. This process ensures that no symptoms are left out and gives the provider an initial opportunity to develop a broad range of differential diagnoses while reviewing the symptom list early on in the patient visit. It provides the health-care provider with clues that point to whether the patient has a high probability of having Lyme disease, a possible case of Lyme disease, or is unlikely to have Lyme disease. It also reassures the patient that the provider will pay close attention to all of their complaints.
All of the points on the list in Section 1 are symptoms that can be seen with Lyme disease. They are not specific to Lyme disease in and of themselves, and can be found in many other illnesses. However, the gestalt that can be perceived by looking at all of the symptoms simultaneously helps the clinician reach a probability as to whether the patient may suffer from Lyme disease and associated tick-borne disorders. At the same time this list can also be used to identify simultaneous overlapping disease states, so that the true source of the patient’s suffering is discovered. These multifactorial causes of illness are often at the heart of most chronic disease states, and this led me to create the MSIDS model. It can be immensely helpful in ruling out other disease processes on the MSIDS map while looking for specific symptom complexes that are frequently seen in Lyme disease (such as symptoms coming and going with good and bad days, migratory joint and muscle pain, neuralgia that comes and goes and migrates, headaches, and sleep disorders, with associated cognitive deficits).
Sections 2 and 3 of the questionnaire represent those signs and symptom complexes most associated with Lyme and MSIDS, which I have compiled after examining hundreds of our patients’ charts over the last decade. Section 4 is based on two of the four questions in the Healthy Days Core Module used by the CDC to track population trends nationally and identify health-care disparities, and it helps us identify the frequency of physical and mental health problems in the preceding month.
Talk to your doctor about the results of this questionnaire. Depending on your score, you may want to follow up with blood tests for Lyme disease IFA (immunofluorescent assay), ELISA (enzyme-linked immunosorbent assay, and a Western blot, through a reliable laboratory), with confirmatory evidence of other tick-borne diseases as well. Do not just rely on the CDC criteria of using an ELISA in a two-tiered testing protocol, as this is not sensitive enough to confirm the diagnosis. You can use this questionnaire as the starting point of the decision-making detective work that will lead you to the proper diagnosis. Remember, Lyme disease is a clinical diagnosis, and blood tests only help to confirm your clinical suspicion.
Answer the following questions as honestly as possible. Think about how you have been feeling over the previous month and how often you have been bothered by any of the following problems. Score the occurrence of each symptom on the following scale: none, mild, moderate, severe.
SECTION 1: SYMPTOM FREQUENCY SCORE
0 None 1 Mild 2 Moderate 3 Severe
1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change; loss or gain
3. Fatigue, tiredness
4. Unexplained hair loss
5. Swollen glands
6. Sore throat
7. Testicular or pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained breast milk production; breast pain
10. Irritable bladder or bladder dysfunction
11. Sexual dysfunction or loss of libido
12. Upset stomach
13. Change in bowel function (constipation or diarrhea)
14. Chest pain or rib soreness
15. Shortness of breath or cough
16. Heart palpitations, pulse skips, heart block
17. History of a heart murmur or valve prolapse
18. Joint pain or swelling
19. Stiffness of the neck or back
20. Muscle pain or cramps
21. Twitching of the face or other muscles
23. Neck cracks or neck stiffness
24. Tingling, numbness, burning, or stabbing sensations
25. Facial paralysis (Bell’s palsy)
26. Eyes/vision: double, blurry
27. Ears/hearing: buzzing, ringing, ear pain
28. Increased motion sickness, vertigo
29. Light-headedness, poor balance, difficulty walking
31. Confusion, difficulty thinking
32. Difficulty with concentration or reading
33. Forgetfulness, poor short-term memory
34. Disorientation: getting lost; going to wrong places
35. Difficulty with speech or writing
36. Mood swings, irritability, depression
37. Disturbed sleep: too much, too little, early awakening
38. Exaggerated symptoms or worse hangover from alcohol
Add up your totals from each of the four columns. This is your first score.
SECTION 2: MOST COMMON LYME SYMPTOMS SCORE
If you rated a 3 for each of the following in section 1, give yourself 5 additional points:
• Forgetfulness, poor short-term memory
• Joint pain or swelling
• Tingling, numbness, burning, or stabbing sensations
• Disturbed sleep: too much, too little, early awakening
SECTION 3: LYME INCIDENCE SCORE
Now please circle the points for each of the following statements you can agree with:
1. You have had a tick bite with no rash or flulike symptoms. 3 points
2. You have had a tick bite, an erythema migrans, or an undefined rash, followed by flulike symptoms. 5 points
3. You live in what is considered a Lyme-endemic area. 2 points
4. You have a family member who has been diagnosed with Lyme and/or other tick-borne infections. 1 point
5. You experience migratory muscle pain. 4 points
6. You experience migratory joint pain. 4 points
7. You experience tingling/burning/numbness that migrates and/or comes and goes. 4 points
8. You have received a prior diagnosis of chronic fatigue syndrome or fibromyalgia. 3 points
9. You have received a prior diagnosis of a specific autoimmune disorder (lupus, MS, or rheumatoid arthritis), or of a nonspecific autoimmune disorder. 3 points
10. You have had a positive Lyme test (IFA, ELISA, Western blot, PCR, and/or borrelia culture). 5 points
SECTION 4: OVERALL HEALTH SCORE
1. Thinking about your overall physical health, for how many of the past thirty days was your physical health not good?________ days
Award yourself the following points based on the total number of days:
0–5 days = 1 point
6–12 days = 2 points
13–20 days = 3 points
21–30 days = 4 points
2. Thinking about your overall mental health, for how many days during the past thirty days was your mental health not good?________ days
Award yourself the following points based on the total number of days:
0–5 days = 1 point
6–12 days = 2 points
13–20 days = 3 points
21–30 days = 4 points
Record your total scores for each section below and add them together to achieve your final score:
Section 1 Total: ________
Section 2 total: ________
Section 3 total: ________
Section 4 total: ________
Final Score: ________
If you scored 46 or more, you have a high probability of a tick-borne disorder and should see a health-care provider for further evaluation.
If you scored between 21 and 45, you possibly have a tick-borne disorder and should see a health-care provider for further evaluation.
If you scored under 21, you are not likely to have a tick-borne disorder.
Interpreting the Results
We see a high frequency of Section 1 symptoms in our patients, including fatigue, joint and muscle pain that often migrates, sleep disorders, as well as memory and concentration problems, and a high frequency of Section 3 symptoms, especially neuropathic pain that comes and goes and migrates (tingling, numbness, burning, etc.). These form a cluster of presenting symptoms that are characteristic of those with a high probability of having Lyme-MSIDS.
In one recent study conducted in our office of 100 consecutive patients, we found that more than 25 percent reported that the following symptoms were present most or all of the time in the month preceding their office visit. Many of these patients reported that these symptoms affected their quality of life: 71 percent reported that their physical health was not good and 47 percent reported that their mental health was not good on at least fifteen days in the previous month. The most common symptoms related to Lyme and MSIDS are:
• Fatigue, tiredness
• Stiffness of the neck or back
• Joint pain or swelling
• Tingling, numbness, and/or burning of the extremities
• Confusion, difficulty thinking
• Difficulty with concentration or reading
• Forgetfulness, poor short-term memory
• Disturbed sleep: too much, too little, early awakening
• Difficulty with speech or writing
I believe it is prudent that patients with these presenting symptoms be tested for tick-borne disorders. The list of most common symptoms we found in our one hundred patients also corresponds to the symptom cluster identified in Nancy Shadick’s work on Lyme disease, which was published in the medical literature years ago. She examined 186 patients, each with a history of Lyme disease, and used Centers for Disease Control and Prevention (CDC) case status and 167 controls (no history of Lyme disease) in a population-based, retrospective cohort design. We have therefore identified a symptom complex that health-care providers can refer to when patients come to their offices, and if that symptom cluster is positive, they can be tested and considered for a diagnosis of Lyme disease. Using the questionnaire in that manner will help to identify chronically ill patients with undiagnosed tick-borne diseases, improving the diagnosis and treatment of these patients.
A Sample Consultation Using the Horowitz Lyme–MSIDS Questionnaire
The following is a typical initial consultation in my office. Mrs. Q is a fifty-nine-year-old white female who has suffered for the last eighteen years with a multitude of symptoms. She has been to over twenty physicians looking for answers, including visiting prestigious medical centers in the Midwest and Northeast. She has received numerous diagnoses, including chronic fatigue syndrome, fibromyalgia, and depression, labels that attempt to explain her complaints of being chronically tired, multiple musculoskeletal aches and pains, inability to get a full night’s sleep, and feeling depressed over her poor, seemingly intractable state of health. She has brought medical records from the last ten years, all neatly bound in a large ring binder.
As I look through her records I note that she has had the standard battery of tests most board-certified internists and specialists would order. All of her test results are negative except for a low-level autoimmune marker (Anti-Nuclear Antibody 1:80 speckled), which is positive but not high enough to give her the diagnosis of a nonspecific autoimmune disorder. She clearly is tired of being told that it is all in her head. She looks at me with a faint smile of hope.
“Why are you here Mrs. Q? Did someone refer you to me?”
“Many friends of mine have come to you and told me that they got help.”
“You know that I pay people to say that. Are you sure that these people like you and are really your friends?”
She smirks. I see that my bad medical humor is having its therapeutic effect.
“Actually, it was my specialist at the Mayo Clinic who suggested I see you. He had nothing left to offer me and thought that I might have ongoing Lyme disease.”
“Well Mrs. Q, let’s go over the questionnaire that you filled out in the waiting room. Let’s see if we can determine your probability of having Lyme disease from a clinical standpoint.”
The first thing that I notice is that she has circled almost every symptom on the list. The only one not circled is “testicular pain.” I turn to Mrs. Q.
“I noticed that you have every symptom on the list except testicular pain.”
“That’s right Dr. H. That symptom I reserve for my husband when he doesn’t give me what I want.”
Uh, oh, I think, she dishes it back. I feel my legs come together ever so slightly.
“Okay, let’s start at the top of the list. Fevers, day sweats, night sweats, and chills. Which of these do you have, and for how long?”
“I have had day sweats and night sweats for the last eighteen years.”
“Is it primarily day sweats or night sweats?”
“Night sweats. They can be drenching.”
“Did you have an early menopause? Your answer implies that the sweats started when you were forty-one years old.”
“No, Dr. Horowitz. My periods had become irregular in my midforties, but all my hormonal studies were normal with my OB/GYN. She couldn’t figure out why I had them. When I went through menopause at age fifty, I had hot flashes, but these feel different.”
“Any travel to foreign countries? Any possibility you may have been exposed to malaria?”
“Has there been any chronic coughing, shortness of breath, or blood in the phlegm?”
“Well, I would occasionally have a cough and feel like I couldn’t get enough air, but I went to see the pulmonary doctor, and he said the chest X-ray was normal and my pulmonary function tests were normal. He suspected allergies with a postnasal drip were the culprit.”
“What about chills?”
“I do get chills on and off, where I feel very cold.”
“And do the symptoms come and go?”
“They do, Dr. H. In fact, I just had some drenching sweats a few nights ago.”
I sit up in my chair as I pose the million-dollar question. “Has anyone ever tested you for Babesia? It is a malaria-like organism that causes these same symptoms.”
“No, Dr. Horowitz, I don’t believe they have.”
Actually, I see while reviewing her records that there was one physician who ordered a Babesia titer from one of the local laboratories, and it was negative. “Any swollen lymph nodes or weight loss?”
“I wish, Dr. H. I’ve gained thirty pounds over the last eight years and can’t get it off. I do occasionally have a sore throat and swollen glands, but the ENT doctor told me I probably am picking up frequent viral infections.”
OK, so let’s stop here. How often do patients get sore throats and swollen glands one time per month for several years? She had drenching night sweats for the past eighteen years on and off, and nine years before menopause set in. There are no clinical signs of tuberculosis or lymphoma, and the chest X-rays have been negative. There’s been no foreign travel, although that doesn’t necessarily rule out a diagnosis of malaria. The hormonal studies ruled out hyperthyroidism, and there were no significant clinical signs of anxiety and panic attacks. I begin to think her diagnosis may include Babesia. Also, what is the likelihood of getting cyclical sore throats and swollen glands almost every month for the past several years? You don’t usually see that with mononucleosis/Epstein-Barr Virus (EBV) or other viral infections, but Lyme disease with co-infections (Babesia/Bartonella) certainly can present in a cyclical manner, when symptoms come and go. In fact, it is a hallmark of Lyme-MSIDS that symptoms come and go in this fashion.
The next symptom she had circled was fatigue.
“Mrs. Q, how bad is your fatigue? Is it mild, moderate, or severe? Does it come and go? Are there good days and bad days? Do you notice if there are certain times of the day when it gets better or worse? Does food affect it at all?”
“Well, Dr. H, I have noticed that it does tend to come and go with good and bad days. In fact, some days are so bad that I can barely get out of bed, while other days I can make it out to shop.”
“Okay, so the fatigue varies between moderate and severe?”
“And it is affected by food? Can you tell me if it is better or worse at any particular time of the day?”
“Well, I have noticed that it is especially bad at around three o’clock in the afternoon, when I feel like I could take a nap.”
“Do you ever have a snack to see if it gets better?”
“Of course. I’m a nosher; I love to snack. Maybe sometimes it seems to help.”
There are at least a hundred reasons why patients present with fatigue; the list is quite extensive: low blood pressure/autonomic nervous system dysfunction; sleep deprivation; reactive hypoglycemia; adrenal fatigue with abnormally low cortisol levels; or other hormonal problems, such as low thyroid hormone, low growth hormone, or low sex hormones. The list also includes: viral; parasitic; yeast; and bacterial infections, including Lyme disease and co-infections; mitochondrial dysfunction; detoxification problems, with chemical sensitivity, autoimmune issues, with elevated cytokine levels; gastrointestinal issues, including food allergies; inflammatory bowel disorders and hepatitis; functional medicine abnormalities; cardiac issues, including congestive heart failure and cardiomyopathy; and depression. The problem is that all of these etiologies also can be associated with Lyme-MSIDS and are some of the reasons that these patients continue with chronic, persistent symptomatology despite having an antibiotic treatment history. As you’ll learn in the next chapter, these are some of the sixteen nails in the foot of the Lyme patient that must be removed before they can say that they no longer have pain in their foot.
Are there any clues in Mrs. Q’s history to imply Lyme disease? Yes, certainly. Her fatigue comes and goes in a cyclical fashion, which is the hallmark of Lyme disease. She is also overweight and probably has metabolic syndrome, like at least half of Americans over sixty (and one third of the total population). Reviewing her laboratory results from her binder, I see an elevated triglyceride level and low HDL in a woman with central obesity and an elevated blood pressure. Her insulin resistance, with abnormally high levels of insulin, might be contributing to reactive hypoglycemia, since her fatigue is exacerbated in the midafternoon. So Lyme disease and reactive hypoglycemia are certainly some of the possible candidates we could consider so far. Babesia is not far behind and could be responsible for her intermittent drenching night sweats with the associated cough, shortness of breath, and air hunger that are classic symptoms seen in babesiosis.
The next symptom she circled is, loss of libido. Although Mrs. Q was fifty-nine years old and postmenopausal, I still needed to ask when it began, since 99.9 percent of all Lyme disease patients who come to my office have lost their sex drive. Even twenty-year-old men come to my office complaining of low libido, and often they have testosterone levels in the 200 to 300 range (a normal testosterone level for a twenty-year-old man is at least 700 to 800, i.e., two to three times higher).
“When did you lose your sex drive, Mrs. Q?”
“Well, Dr. H. I can’t remember the last time I had sex. Of course, my memory has gotten worse over the last few years, but I’m pretty sure it’s been at least in the last fifteen years.”
“Does your husband still have an interest?”
“Oh, he would if I let him, but let’s just say that my days of being fruitful and multiplying are done.”
“Okay, you already told me about the symptoms of sore throat and swollen glands coming and going. What about the chest pain and shortness of breath that are circled on the questionnaire? Did you ever have it evaluated?”
“Oh sure, Dr. H. I’ve seen two cardiologists over the last eighteen years. They ran echocardiograms, EKGs, stress tests, and Holter monitors but couldn’t find anything. They told me it probably was due to reflux and esophageal spasm, since the gastroenterologist found a hiatal hernia on my endoscopy.”
“Does it hurt when you press on the chest wall? Does that reproduce the pain?”
I press on her sternum and both sides of her ribs laterally to see if I can elicit a response.
“It does sometimes, just not all the time,” she says.
Lyme disease frequently causes costochondritis, which is inflammation in the chest wall, ribs, and intercostal muscles. Many Lyme patients complain of chest pain, shortness of breath, and palpitations and have negative cardiac workups, except for the occasional twenty-four-hour Holter monitor that shows frequent PVCs (premature ventricular contractions, or extra heartbeats). Rarely do we see first- and second-degree heart blocks, and in the last twenty-six years I’ve seen a patient with a third-degree heart block perhaps only three times. Fortunately, antibiotics cured the problem without the need for a permanent pacemaker.
Doctors are taught that 90 percent of all diagnoses come from listening to the patient and taking a detailed history. Internists are trained to ask patients to describe each symptom in detail. For example, with a report of pain, we ask: “Is it dull, sharp, pressure-like, or burning?” “Does it radiate anywhere, and does anything make it better or worse?” Since Mrs. Q is presenting with metabolic syndrome, she would have a higher than normal cardiovascular risk for a stroke or heart attack.
“Have you ever had a cardiac catheterization?”
“No, Dr. H.”
“How about any noninvasive tests of the coronary arteries, such as a rapid CT angiogram of the heart, or CTA?”
“No, I’ve never had those tests.”
OK, so we will store away in the memory banks consideration of a CT angiogram of the heart with a coronary calcium score at some point in the future, although she has no chest pain on exertion, and the chest pain does not radiate up into her neck or down her arms. However, her elevated cardiovascular risks bother me. Certainly, two negative cardiac evaluations make costochondritis and GERD with esophageal spasm the most likely candidates, and Lyme disease frequently causes chest pain with costochondritis, with associated palpitations and shortness of breath (which is often made worse with Babesia). The notes in her binder show that reactive airways disease was already ruled out by a pulmonologist who had seen her for her shortness of breath, so asthma was not high on the differential list. She had not had provoked pulmonary function testing with a methylcholine challenge, and GERD can be responsible for asthma symptoms.
“OK, how about the joint aches and muscle pains that you circled on the list. Tell me about them, Mrs. Q.”
“Well, Dr. H, I hurt all over. Every joint and muscle in my body hurts.”
“Do the joints ever get red and swollen or hot?”
“No, but my neck cracks a lot, and I do have a lot of neck pain and stiffness in my neck and upper back.”
“Does anything make it better or worse?”
“Well, I pop a few Tylenol or Advil from time to time and that seems to help.”
“Have you seen any doctors regarding these symptoms?”
“I’ve seen two rheumatologists and an orthopedic doctor. They took X-rays and told me for my age I had some normal osteoarthritis, but they couldn’t find any other reason for the pain.”
Cracking in the neck is one of those unusual symptoms that most Lyme disease patients complain of. Many doctors and integrated health practitioners, such as chiropractors, would be able to pick up on the possible diagnosis of Lyme disease simply by asking about stiffness, cracking in the neck, and migratory muscle and joint pain in their patients who also have multiple systemic symptoms. When a patient has seen several rheumatologists, I know that he or she has already been ruled out for the most common causes of arthritis, such as osteoarthritis, and has been checked for autoimmune diseases, such as lupus and rheumatoid arthritis. This is usually accomplished by taking X-rays of the affected joints and analyzing blood for an ANA and rheumatoid factor (RF). Unfortunately, Lyme disease can cause false positive ANAs and rheumatoid factors due to a patient’s overstimulated immune system. This can lead to a mistaken diagnosis of lupus or rheumatoid arthritis. This is why drawing a CCP (cyclic citrullinated peptide) is so important. It is a specific marker for rheumatoid arthritis and will help determine whether the patient has true rheumatoid arthritis or not. Patients with a positive ANA or RF often are prescribed immunosuppressive drugs, such as steroids or immunomodulatory drugs, like Enbrel or Arava. These treatments can have dire consequences for the Lyme disease patient who is co-infected, since they are already immune-suppressed, and steroids can cause their underlying infections and subsequent manifestations to get much worse. These patients also usually have been checked for elevated levels of creatine phosphokinase (CPK) to rule out a myositis (inflammation and breakdown of the muscles), high uric acid levels, to rule out gout, and often they have had inflammatory markers drawn, to evaluate the amount of inflammation in their body. This is usually accomplished using the erythrocyte sedimentation rate (ESR) and C reactive protein (CRP), while checking their human leukocyte antigen status (HLA) to determine the likelihood that they have an associated autoimmune disease. On a physical examination, the rheumatologist will typically check the range of motion of the joints and press on specific areas of the body to check for areas of tenderness.
“Does it hurt when I press over these particular areas at the back of your head, neck, shoulders, spine, hips, and knees?”
All the classic fibromyalgia trigger points are tender; that is how she got the diagnosis of fibromyalgia.
“By the way, Mrs. Q, I have one important question: Does the muscle pain and joint pain migrate? Does it move around the body, so that one day it hurts in one place and two days later it hurts somewhere else? Does it tend to keep moving around, with occasional sharp, shooting pains that also come and go?”
“Yes, Dr. H. That is exactly what happens. The pain travels all over my body without rhyme or reason. They told me that I must be crazy, because of the way I keep reporting these symptoms to them.”
OK, stop here! How many diseases actually cause migratory muscle and joint pain? Although it might be found in the medical literature that gonorrhea or Mycoplasma can cause it, there is generally only one disease that has this as one of its hallmark clinical symptoms. Yes, you guessed it. It is Lyme disease.
“Mrs. Q, did you ever notice: When you got sick with an upper respiratory infection, sore throat, or a sinus infection, and the doctor put you on antibiotics, did it make your pain better or worse?”
“It could be better or worse. Dr. H, you must be a psychic. How did you know?”
This is an easy magic trick that anyone can learn. Patients with Lyme-MSIDS often have been put on tetracyclines, quinolones, penicillins, or cephalosporin antibiotics for a variety of non-Lyme-related infections, and the patients often notice a decrease in their overall pain. Or, when they are taking these medicines for other infections, they may notice a worsening of their pain, which is caused by the release of inflammatory molecules killing off Borrelia, which is called a Jarisch-Herxheimer reaction.
“I also noticed that, on the questionnaire, you circled that you are having tingling, numbness, and burning sensations. Let me guess. Does that migrate around your body also, and tend to come and go?”
“That is absolutely right, Dr. Horowitz. Is that common in Lyme disease?”
“Well, Mrs. Q, one of the hallmarks of Lyme disease is migratory joint and muscle pain and neuralgia with a tingling, numbness, and/or burning that tends to come and go that we call ‘migratory paresthesias.’ Did they do an EMG (electromyogram, a nerve conduction test) or nerve biopsy to rule out neuropathy or diseases like carpal tunnel syndrome?”
“Yes, they did. They performed an EMG.”
“Did they find anything?”
“No, they told me that it was all normal.”
I notice, however, that they did not do a biopsy of the nerves to rule out a small fiber neuropathy, which is not uncommon in persistent Lyme disease.
The majority of Lyme patients I see in my practice have peripheral neuropathy. It presents as burning sensations in different parts of the body, or tingling and numbness that often comes and goes. Patients usually describe this in the upper and lower extremities, and often on their face and scalp. Many patients have gone to the emergency room for a CAT scan of the head or an MRI of the brain to rule out a transient ischemic attack (TIA) or stroke/cerebrovascular accident (CVA), since they had numbness, which was new or increased, in one part of their body. The doctors would rule out a TIA or stroke and send them home without a diagnosis, often telling them to follow up with their primary care physician and a neurologist. Since Lyme disease can present with symptoms primarily affecting only one side of the body, it has even stymied a few neurologists along the way. They perform an ultrasound or magnetic resonance angiography (MRA) of the carotid arteries, looking for plaque that could have caused a TIA or a stroke, and come up empty-handed. They will occasionally find some unidentified bright objects (UBOs) on an MRI of the brain, but these are nonspecific and can be seen in a variety of conditions, including Lyme disease. If there are a significant amount of white spots on an MRI, the diagnosis of multiple sclerosis will usually be entertained.
“Did the neurologist ever tell you that he suspected MS?”
“Yes, he did. He said that there weren’t enough white spots on the MRI, however, to make the diagnosis.”
I ask her to bend her head forward and try to touch her chin to her chest. “Do you notice any increase in numbness of the extremities?”
“No, I don’t feel any different.”
I asked her to do this maneuver because people with MS often experience a tingling or electrical sensation in their extremities and down their spine when they touch their chin to their chest, which is known as a Lhermitte’s sign.
Of course, Lyme can mimic MS. Any patient who is diagnosed with multiple sclerosis needs to rule out Lyme disease, co-infections such as chlamydia pneumonia and Mycoplasma, and heavy metals as possible causes for their illness. The problem is that patients with an MS presentation often try to rule out Lyme disease using an insensitive ELISA test or a Western blot conducted by local laboratories that often will not pick up Lyme disease.
“I also noticed that you circled headaches on the questionnaire. How bad are they? On a scale of zero to ten, zero being no pain and ten being the worst pain that you can imagine, how would you describe the headache?”
“It usually is a four or five on scale of one to ten, but occasionally, Dr. H, I can get to an eight or nine, when I get nauseous, vomit, and have light sensitivity.”
These are classic symptoms of a migraine.
“Did the doctors ever diagnose you with migraines? Did your mother have migraines? Migraines can often be familial in nature.”
“Yes, I was told that I suffer from migraines, and do have a family history. I take Imitrex from time to time, when the headaches are bad, and occasionally I also need to take a Fioricet.”
Certain migraines, such as basilar ones, can increase the risk of a stroke, and she already had multiple cardiovascular risk factors. We would need to address this carefully in the future.
“Were they generally worse around your periods?”
“Oh, definitely, Dr. H. They tried me on all types of medications to try and stop them—beta-blockers, calcium channel blockers, Topamax, Depakote, Elavil—but I couldn’t tolerate some of the side effects of the medications, so I didn’t stay on them.”
“What about the other low-level headaches that you frequently complain of. Do you ever notice that, if you don’t eat, that you get a headache?”
“Yes, as a matter of fact, that does happen.”
This strengthens the probable diagnosis of reactive hypoglycemia, or blood sugar swings, as one cause for her headaches. Midday fatigue accompanied by headaches, either from eating too many carbohydrates at lunch or not eating for long periods of time, are common symptoms of hypoglycemia. This is also seen in patients with metabolic syndrome and insulin resistance, which Mrs. Q complained of earlier. Another cause of hypoglycemia with associated fatigue is low adrenal function, which is commonly seen in Lyme disease and many other chronic illnesses, so that also would need to be considered in the differential diagnosis. Finally, headaches can have other causative factors, including sleep deprivation and food allergies, as well as Lyme and multiple co-infections. It is important to identify all the factors causing each symptom if the patient is to attain their greatest sense of well-being.
“I also noticed, Mrs. Q, that you circled light-headedness and vertigo on your symptom list. How often does this happen? Do you notice any light-headedness when you change positions, such as going from sitting to standing?”
As I ask this question I fit her with a blood pressure monitor. Mrs. Q’s baseline blood pressure in the exam room was 90/60, which is on the low side of normal.
“Yes, I usually get light-headed standing up, and then it seems to come and go for no reason.”
“Have you ever seen a doctor to get it evaluated?”
“Oh sure. The neurologist sent me to an ear, nose, and throat doctor when he couldn’t find the cause. They did some tests in which they squirted water in my ears and watched my eyes move, and then they moved my head into different positions, and made me stand up and close my eyes. They told me that all the tests were negative.”
OK, so they tested her inner ear and cerebellum to rule out common causes for her dizziness, and all the tests were negative. No one, however, had ever conducted a tilt-table test.
“Did they ever turn you upside down in the hospital and follow your blood pressure?”
“No, Doc. It’s probably the only test they didn’t do.”
I have Mrs. Q stand up from her chair in the examining room. The cuff showed that her blood pressure dropped to the low eighties over fifties, with an increase in her pulse rate, which means her heart rate went up in an effort to bring up the blood pressure. She probably had Lyme disease with associated autonomic nervous system dysfunction. I slowly turn to her and say:
“You probably have POTS syndrome.”
She smiles. She looks at me straight in the eyes and says:
“I never did that stuff in college, Doc.”
“No, no Mrs. Q. POTS (Postural orthostatic tachycardia syndrome) is a form of autonomic nervous system dysfunction. It means that you are chronically running a low blood pressure, and that is why you get dizzy when you stand up. It may be responsible in part for some of your fatigue, dizziness, and concentration problems. Did any of the other doctors ever try you on a drug like Florinef or ProAmatine, which can raise your blood pressure?”
“No, Dr. H. Those don’t sound familiar.”
“Moving on down the list, I noticed that you also circled light sensitivity and sound sensitivity. Do you have it all the time, occasionally, or are you getting it just when you get your migraines?”
“No, Dr. Horowitz. I have it most of the time. I have to wear sunglasses outside, and I really have a difficult time being around loud noises. That’s why I tell my husband all the time to shut up. You know he’s deaf as a doorknob and likes to keep the volume on the TV up, or is yelling when I can hear him perfectly.”
Mrs. Q’s husband was sitting in the exam room the entire time during our interview. He rolled his eyes.
“OK, and what about the symptoms of memory and concentration problems that you circled on the questionnaire? How long have you complained of this? Is it mild, moderate, or severe? Does it come and go? Are you taking any medications for it?”
“Well, Dr. Horowitz, they ran all the tests and just told me it was normal aging. It wasn’t bad enough to be called Alzheimer’s, but my doctor did suggest some drugs that might make it better.”
No doubt those medications would’ve been an Aricept-Namenda combo, or something similar. In reviewing the records I noticed that they tested for B12 and folic acid with the routine bloods, but I did not see a methylmalonic acid (MMA) level, which is a marker for possible B12 deficiency. We see a small number of patients who have elevated MMA levels, and their memories improve with B12 supplementation. I also noticed that Mrs. Q’s B12 level was 340. This was not below the critical level of 200, which would imply pernicious anemia, but it was still low. In fact, it was low enough that the laboratory had printed on the report that neuropsychiatric abnormalities can be seen in 5 percent to 10 percent of the population with B12 levels between 200 and 400. Her value at 340, therefore, put her in range for possible B12 deficiency.
“Have you ever taken vitamin B12?”
“No. I was told my levels were normal.”
OK, I make a mental note. We will be running other tests for vitamin B12 deficiencies and methylation defects (enzymatic reactions, where a methyl group is added to a protein, DNA, or heavy metal to modify its structure and function), specifically the MMA and methylenetetrahydrofolate reductase (MTHFR) tests, and for homocysteine levels. I would also consider a trial of methyl B12 shots, as they can be very helpful in a subset of Lyme disease patients, whether their B12 levels are abnormally low or not. This is probably due to a block in their methylation and detoxification pathways, and the extra methyl groups help them to more effectively detoxify certain chemicals and heavy metals from their bodies.
In reviewing her laboratory results from her big ring binder, I also see that her thyroid function tests, to evaluate her fatigue and memory loss, were incomplete. She was missing the tests for T3, free T3, and reverse T3. All of these tests are important markers of proper thyroid function. OK, I make a mental note to expand out the thyroid testing with the upcoming blood tests I will order. Many Lyme disease patients don’t have adequate levels of active thyroid hormones and may have elevated levels of reverse T3. This can contribute to their ongoing fatigue and memory loss.
Unfortunately, the established range for low normal thyroid functions were established in healthy populations, not in a population of individuals with chronic illnesses, such as tick-borne infections. These patients also often have elevated cortisol levels due to the stress of their illness. Cortisol is a hormone that is normally produced in higher amounts by the adrenal gland during periods of stress. Elevated levels of cortisol can interfere with thyroid hormone levels and cause a sick “euthyroid” syndrome. This is a syndrome seen in patients whose thyroid does not appear to be dysfunctional, who are severely ill or malnourished, and have very low T3 and T4 levels, possibly contributing to their fatigue. Also, some of these patients have associated pituitary dysfunction, or even pituitary failure. The pituitary gland is located in the brain, and it is the master regulator of the hormones of the body. It produces hormones like thyroid stimulating hormone (TSH), which travels through the blood and goes to the thyroid, stimulating the production of thyroid hormones. If Lyme disease has affected the pituitary gland, it may not make TSH properly, lowering thyroid production. In that circumstance, a physician cannot rely on the TSH level, a test result that we learn in medical school is one of the most reliable markers for thyroid function.
“Tell me about your sleep Mrs. Q. I noticed that you circled on the questionnaire that you suffer from insomnia. Is it a problem falling asleep, frequent awakening, or both? Do you snore or have restless legs that don’t allow you to sleep? Do you have to go to the toilet in the middle of the night? Do you take any medication for sleep?”
“Well, Dr. H, I have problems falling asleep, and I do frequently wake up. I went for a sleep study at the hospital a few years ago, and they told me that I only have mild sleep apnea. They said it wasn’t severe enough to cause me to have this level of insomnia. They told me to take some Ambien for sleep, but the effect doesn’t seem to last. I’ve tried several other sleeping pills, and none of them seem to work.”
“Have you ever tried Benadryl, or any herbal remedies? Some patients find that melatonin, valerian root, and green tea extracts like L-theanine will sometimes help.”
“No, no one ever suggested those to me.”
“How many hours do you actually sleep per night?”
“Oh, I maybe get four to five hours, tops.”
Now with “normal” aging, sleep patterns do change. Lyme disease, however, can cause a severe, resistant sleep disorder in at least 80 percent to 90 percent of the patients who I see, and that includes young patients in their twenties. Without a good night’s sleep it is almost impossible to reverse some of the resistant symptoms in these patients. This is because sleep deprivation leads to the production of cell-signaling molecules called cytokines, some of which are inflammatory, such as interleukin-6 (IL-6), which contribute to the symptoms of fatigue, joint and muscle pain, and memory/concentration problems in these patients. It is, therefore, essential to get to the underlying source of the patient’s problem and not to just give a medication for the symptom. Patients should be evaluated for the most common causes of insomnia, such as sleep apnea, hormonal issues, restless leg syndrome, medication side effects, bladder problems, and psychiatric issues, such as depression and anxiety. MSIDS and Lyme disease can cause insomnia, but there are often overlapping factors that must be ruled out to significantly improve the quality of the patient’s sleep.
“Finally Mrs. Q, I see that you circled on the questionnaire that your symptoms are worse after drinking alcohol.”
“Yes, Dr. H. I never really drank a lot, but if I have a glass of red wine, I definitely feel worse.”
It is very common that patients with Lyme disease report intolerance to alcohol. Red wine can exacerbate headaches as a migraine trigger, and some patients are sensitive to the sulfites in it. Beer and wine can also trigger hypoglycemic events in susceptible individuals (I always wondered why everyone in medical school could drink several Belgian beers and my head was on the table after the first one! Then I found out I had hypoglycemia).
After reviewing all of Mrs. Q’s symptoms by using the questionnaire, my clinical impression was the following: There was a very strong likelihood that she suffered from Lyme disease, babesiosis, POTS with autonomic nervous system dysfunction, reactive hypoglycemia, with metabolic syndrome, and possible adrenal dysfunction, a Lyme-induced costochondritis and fibromyalgia, and a possible B12 deficiency. That was simply determined from taking the time to take a detailed history, reviewing the medical records and laboratory results that she had brought with her, and formulating differential diagnoses to explain her symptoms.
We can accumulate a tremendous amount of information by taking a careful history, meticulously evaluating all prior medical records and testing, and using the questionnaire. This questionnaire is an essential tool for guiding the provider in evaluating chronically ill patients and formulating differential diagnoses that were not considered in any past medical workups. Mrs. Q had seen approximately twenty physicians over the previous eighteen years who were unable to help her. Knowing that, I already knew that I needed to consider diseases and conditions that might have been missed or overlooked by my colleagues. These include: Lyme disease; babesiosis and co-infections; heavy metal burden; mitochondrial dysfunction; functional medicine abnormalities in the biochemistry of the body; certain vitamin and mineral deficiencies; environmental illness, with chemical sensitivity and associated detoxification problems; hormonal abnormalities, such as adrenal dysfunction and growth hormone deficiency; and reactive hypoglycemia, with or without Candida and food allergies.
In the following chapters we will be looking at a list of sixteen differential diagnoses that I have found to be essential in the evaluation of patients with chronic persistent illness. This list can be of immense value in understanding previously unexplained symptoms and in helping you get to the source of your illness.
Lyme disease is a complex illness. In the next chapter we’ll begin to look at the first point on the sixteen-point MSIDS map as we explore the science behind Lyme disease and associated co-infections found in ticks. We will then explore treatment options that are based on the results of taking a history using the questionnaire and performing a complete physical examination. We will also learn how to order targeted laboratory testing based on the history and physical, and then how to apply the Horowitz sixteen-point differential diagnostic map to determine if there are overlapping etiologies responsible for the present illness.
This model is not just theoretical; it works in clinical practice. This model has been meticulously developed after personally seeing and treating over twelve thousand chronically ill individuals. These patients had remained ill despite the best efforts of our present-day medical system, yet when the MSIDS model was applied to them, it helped solve their medical mysteries, and they often achieved greater health than they had thought possible. The MSIDS model offers hope to those with chronic diseases who have been unable to find answers for their symptoms.
Copyright © 2013 by Richard Horowitz