Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease

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9781250054470: Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease

From one of the country's foremost doctors comes a ground-breaking book about diagnosing, treating and healing Lyme, and peeling away the layers that lead to chronic disease.

You may not know that you have Lyme. It can mimic every disease process including Chronic Fatigue Syndrome, Fibromyalgia, autoimmune conditions like MS, psychiatric conditions like depression and anxiety, and cause significant memory and concentration problems, mimicking early dementia. It is called the "Great Imitator," and inaccurate testing-combined with a fierce, ongoing debate that questions chronic infection-makes it difficult for sufferers to find effective care.

When Dr. Richard Horowitz moved to the Hudson Valley over two decades ago to start his own medical practice, he had no idea that he was jumping into a hotbed of Lyme disease. He would soon realize that many of the chronic disease diagnoses people were receiving were also the result of Lyme-and he would discover how once-treatable infections, in the absence of timely intervention, could cause disabling conditions. In a field where the number of cases is growing exponentially around the world and answers remain elusive, Dr. Horowitz has treated over 12,000 patients and made extraordinary progress. His plan represents a crucial paradigm shift, without which the suffering will continue.

In this book, Dr. Horowitz:

- Breaks new ground with a 16 Point Differential Diagnostic Map, the basis for his revolutionary Lyme treatment plan, and an overarching approach to treating all chronic illness.

- Introduces MSIDS, or Multiple Systemic Infectious Disease Syndrome, a new lens on chronic illness that may prove to be an important missing link.

- Covers in detail Lyme's leading symptoms and co-infections, including immune dysfunction, sleep disorders, chronic pain and neurodegenerative disorders - providing a unique functional and integrative health care model, based on the most up-to-date scientific research, for physicians and health care providers to effectively treat Lyme and other chronic illnesses.

Cutting through the frustration, misinformation and endless questions, Dr. Horowitz's enlightening story of medical discovery, science and politics is an all-in-one source for patients of chronic illness to identify their own symptoms and work with their doctors for the best possible treatment outcome.

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About the Author:

RICHARD HOROWITZ is a board-certified MD specializing in Internal Medicine. He and his wife, Lee, founded the Hudson Valley Healing Arts Center in Hyde Park, New York, which has treated over 12,000 patients for tick-borne diseases over the past twenty-six years. Dr. Horowitz is known for his pioneering work with Lyme disease and is recognized to be one of the country's foremost experts on chronic illness.

Excerpt. © Reprinted by permission. All rights reserved.:

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.
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...

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