Lyme Disease

medical myopia and the hidden epidemic

Bernard Raxlen, Allie Cashel

• Publisher: Hammersmith Health Books
• Year: 2019
• Print ISBN: 9781781611302
• eBook ISBN: 9781781611319
• Topic: Medicine
• Subtopic: Diseases & Allergies

Lyme disease is one of the fastest growing vector-borne diseases in the world and urban residents in cities with regularly travelling populations should be considered high risk yet there is a little awareness of the issue among either patients or doctors. Based on years of diagnosing and treating this growing problem in NY City, Dr Raxlen, together with 'expert patient' Allie Cashel and a team of international contributors, provides a road map for individuals who suspect they have been infected and are lost in the 'medical maze' of Lyme and other tick-borne diseases, searching for a diagnosis and appropriate treatment. By highlighting the difficulties sufferers face, Raxlen et al aim to increase understanding of the Lyme epidemic worldwide and how sufferers can obtain reliable and effective diagnosis and treatment.

Part One

Slipping through the cracks

To the naked eye, it is invisible, a nothing. Under the microscope it seems a silvery corkscrew undulating on a dark field. The form has simple elegance, like the whorl of a nautilus shell or the sweep of a dragonfly wing. But that simplicity is an illusion. Through the more powerful electron microscope you see not a featureless wiggle, but a shape-shifter – now a spiral, now a thread, now a rod or a sphere – with two walls, a dozen whiplike appendages and internal structures. And beyond any microscope’s view, revealed only indirectly, by laboratory tests, lies a marvel of complexities. The surface bristles with molecules that sense and respond to the environment, and the interior churns like a chemical factory. Inside, more than a thousand genes flicker on and often changing sequences, to allow survival in places as different as a tick’s gut, a dog’s knee and a human brain.

The Biography of a Germ, Arno Karlen

Introduction

What if, at this very moment, hundreds of thousands of people were unaware that they were living in the midst of an epidemic so large that it dwarfs the AIDS epidemic by sheer numbers in North America?

What if this epidemic cut across all populations: women and men, children and adults, the infirm and the fit, the very poor and the very rich?

What if many of our best doctors in cities like New York, London, Paris, Dublin, Sydney and San Francisco were unaware of this very same problem?

This epidemic is upon us. It lurks in the most seductive of locations outside our cities – sought-after vacation places frequented by urban dwellers. These are the favorite getaway spots for the often millions of people who work in our city centers, many of whom are unaware that they are at risk of infection from this insidious microbe.

I’m talking about a tick-borne disease, namely the spirochete bacterium Borrelia burgdorferi, or Lyme disease, as it is more commonly known. Along with a number of other co-infectious pathogens, including deadly viruses, this bacterium has become the scourge of the Northern Hemisphere and is now reaching across Europe, into Asia and even Australia.1

Though the infection is spreading at unprecedented rates, the disease can be hard to spot. Its tell-tale bullseye rash only appears 25-30 per cent of the time, and sometimes three to six weeks after original exposure.2 Other early signs and symptoms may be attributable to simple ‘flu (fever, sore muscles and joints, fatigue) and often can go unnoticed. Then months, or even years, later persistent, intractable symptoms may appear, including neurological, cognitive, psychiatric, arthritic and/or musculoskeletal problems, or chronic fatigue and exhaustion. According to a study in the American Journal of Medicine, these patients are often as impaired as those in congestive heart failure.3

It should not come as a surprise, therefore, that physicians practicing in cities around the world have missed the diagnosis of an infection so enigmatic. Lyme and other tick-borne diseases have become a global scourge. Yet the medical world has been shockingly slow to react. Why is this?

Size and scale – tick-borne disease myopia

Let’s take a look at New York City as a primary example of those at risk for tick-borne infection. There are 8.5 million people in New York City’s five boroughs. It is estimated that approximately 20-25 per cent of the population may leave the ‘concrete metropolis’ for the pleasures of the natural world each year. More visit nearby parklands within the city. Other people leave the city for vacation areas in New Jersey, Connecticut, Long Island, Cape Cod, the Hudson Valley, Fire Island, Maine, and many more wooded and coastal areas. All of these locations are considered to be highly endemic areas for Lyme and other tick-borne diseases.

The Center for Disease Control in the United States recently stated that the number of individuals infected with Lyme disease is likely to be 10 times higher than has already been reported.4 Already, this suggests that tens of thousands have been infected with Lyme over the last 10 years and have not been diagnosed. If we were to add the number of undiagnosed urban cases to that statistic, how many would we report? If we consider just 1 per cent of the number of New York travelers ‘at risk’, that amounts to a minimum of no less than 20,000 people infected yearly.

These numbers, on first inspection, may appear disproportionately inflated and exaggerated, but simple calculations extending over the past 10 years bring the number of cases of tick-borne disease currently undiagnosed in New York City’s five boroughs to an outrageously high number.

If this is a true estimate of the problem, even by half, I find myself facing two fundamental questions: Why hasn’t the sheer number of cases of tick-borne diseases (TBD) overwhelmed the general medical community here in New York, and in other medical epicenters around the world? And: Why are skilled MDs, with flawless credentials, not aware that there is a microbial complex of almost pandemic proportions affecting hundreds of their patients? No one seems to be asking these questions.

Notes

1. Pfeiffer MB (2018). Lyme: The First Epidemic of Climate Change. Washington DC: Island Press.

2. Asbrink E, Hovmark A. Successful cultivation of spirochetes from skin lesions of patients with erythema chronic migraines, Afzelius acrodermatis chronica atrophicans. Acta Pathol Microbiol Immunol Sect B 1985; 93: 161-163.

3. Stricker RB, Johnson L. Chronic Lyme Disease: Liberation from Lyme Denialism. American Journal of Medicine 2013; 126(8): e13 – e14.

4. CDC provides estimate of Americans diagnosed with Lyme disease each year. (2018, August 19). Retrieved from https://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html

Chapter 1

Why is a psychiatrist treating Lyme disease?

Physicians located in urban centers tend to be highly respected leaders in their specialties. Like most specialists, they are trained to concentrate specifically on one part of the body. In order to operate in this ‘reductionist specialist system of thought’, organ systems become separated. Thus, the more specialized the physician, the more difficulty he may have recognizing a puzzling group of transient, and seemingly unrelated, symptoms.

I was trained as a psychiatrist, one of a breed of specialists often known as the ‘Don Quixotes of medicine’. In spite of my specialty training, I have devoted the last 30 years of my medical practice to the treatment of tick-borne disease. An obvious question presents itself here: ‘What are you doing in another specialty, namely “infectious disease”?’ Let me try to answer this legitimate question as best I can.

I was rigorously trained in the scientific, evidence-based practice of diagnosis and treatment. I was taught to divide patient problems into body (physical), brain (neurological), and mind (consciousness, thoughts, emotion). This prevailing thought process is known as dualism, and is the reductionist, deductive method taught in medical schools. It is also the scientific method taught and employed by most modern medical practitioners around the world.

When the body is theoretically divided into boundaries and systems, different symptoms become assigned to specific specialties. The brain is the province of neurologists, neurosurgeons and neuroscientists. These specialists employ impressive technology to explore the architecture, inner metabolic workings and pathology of the brain, using tools such as MRIs, CAT scans, SPECT scans, PET scans, etc.

In a somewhat different world, the psychiatrist deals with the non-physical realm of the brain, the ephemeral reality of ghosts, hallucinatory daemons, manic-depressive exaggerations, paranoid delusions, ADHD, PANDAS and neurotic Oedipal obsessions. However, the specialties of psychiatry and psychology, almost by default, also investigate spheres of cognition, consciousness, sexuality, memory, learning, creativity and emotions. In short, the specialty encompasses all that makes us distinctly human.

I consider myself, first, a medical doctor and, second, by specialty, a psychiatrist. This specialty training, and my first 10 years of active practice in psychiatry, have placed me in a unique situation when dealing with tick-borne disease.

Finding my way to tick-borne disease

I spent my first 10 years in my specialty practicing and teaching ‘family systems’ psychiatry, an approach that studies the family as a unit, rather than singling out a single individual. During this time, I developed a special interest in environmental medicine. I started to see, and to treat, children and adults for the effects of nutritional imbalances. These included food allergies, gluten sensitivity, hypoglycemia, mold toxicity, candida yeast, undiagnosed hypothyroid states, heavy metals and life stresses, all of which had contributed to, and provoked, mental illnesses such as anxiety, depression, ADD or ADHD, and bipolar disorders.

I sometimes referred to these troubled patients as ‘dropped through the cracks patients’. These were people who had been seen by multiple specialists, but had not been helped by the orthodox medical community, and were designated ‘all-in-your-head’ type patients. I found I could often help these patients by treating what had been defined as psychiatric problems with functional or integrated medical techniques. The medical orthodoxy had labeled many of these symptoms as ‘medically unexplained physical symptoms’, or MUPS.5 These were conditions that appeared on the surface to have no direct cause, even after extensive, sophisticated work-ups (patient assessments) using state of the art medical diagnostic techniques.

I, as a specialist in psychiatric medicine, chose to explore and practice in this medical wasteland of MUPS, along with a new group of forward-thinking doctors. In those years, ‘orthomolecular psychiatry’ and ‘holistic medicine’ were names given to medical societies that sponsored this type of thinking. In just a few years, we had been able to successfully treat many patients with new techniques adapted from pioneer medical organizations. This included using nutritional supplements, hypoglycemic diets, intravenous vitamin C/glutathione infusions, food allergy avoidance and treatment with rotation and paleo diets, and more.

Unfortunately, there remained a group of patients who continued to have many residual symptoms, and whose health did not improve significantly. And it was this group of patients that ultimately brought me face to face with the bizarre world of Lyme disease. I have adventured in this controversial, insane, but intensely rewarding, world for the past 30 years

Around 1985, the full extent of the ‘Borrelia plague’ was just beginning to be investigated by a number of physicians across specialties. Physicians were witnessing a strange medical phenomenon: incapacitated patients with an unusual array of multi-systemic problems and multiple symptoms. I also witnessed the same puzzling phenomenon in my practice.

Physician-psychiatrist thinking

For those already familiar with tick-borne disease, it’s common knowledge that the illness knows no well-defined boundaries. The infection can enter into every system of the body and mimic other medical conditions. Though the 11th International Classification of Diseases from the World Health Organization expands the definition of Lyme disease, in practice definitions used by phyicians from the Infectious Diseases Society of America (IDSA) and the Centers for Disease Control and Prevention (CDC) are far too narrow to be clinically useful. These definitions do not acknowledge the scope and strength of the infection and the way it can move from system to system with ease. We need to think outside the box when it comes to this condition, and my particular specialty helps me to do just that.

As a physician-psychiatrist, when I see significant changes in the cognitive and emotional health of my patients (when they have been previously well adjusted), I assess them not just for psychiatric issues, but also for conditions that ...

Table of contents

• Cover
• Title Page
• Contents
• About the Authors
• Part One: Slipping through the cracks
• Part Two: The intuitive clinical case narratives
• Part Three: Gregory Bateson, spirochetes and general systems linkages
• Part Four: A global epidemic
• Part Five: Patient healing
• Appendices
• Abbreviations explained
• Index
• Copyright