Living With Lyme
by Jon Sterngold, M.D.
Note: The following series of articles was written by a medical doctor who was working as an emergency room doctor in Willits, California when he was diagnosed with Lyme disease. It represents the first time a northern California doctor has published any information on Lyme disease or even commented on it publically in a format accessible to the general public. We are grateful to Dr. Sterngold for giving us the perspective of not only an educated Lyme patient, but of a medical doctor with Lyme disease living in our own endemic area. This series was published in the Fall of 2009. We are grateful to The Willits News, Willits CA for permission to reprint this series.
Part 1: AN INTRODUCTION
We live in a Lyme disease endemic hotspot. When Lyme disease exploded in New England over 30 years ago, it was unknown in our neck of the woods. Things have changed. A confluence of climate and land use change with animal and insect migration has produced a tick population in these hills that carries not only the causative, Borrelia bergdorferi, which causes Lyme disease, but also the half dozen or so germs that often co-infect people and which contribute to the extreme difficulty in attempts to cure the disease. If you don’t have the disease and don’t know anyone who does, you will, sooner or later.
In this overview, I will only be referring to late-stage, or chronic Lyme disease complex rather than acute Lyme disease, which can usually be cured with weeks to months of oral antibiotics. When people get the ‘bull’s-eye’ rash following a tick bite, they have a reason to be medically evaluated and treated. Simple. But what happens if someone gets a tick bite and has no initial symptoms? It’s not a pretty picture; life and well-being can be destroyed, effective treatment can be hard or impossible to obtain, treatment and evaluation can be extremely expensive, and sufferers might discover that the medical association that creates guidelines for treatment of infectious diseases denies that they have a treatable infectious disease. They are told that they probably have psychological issues. It’s a real mess out there, and though there are rays of sun peeking through the fog, getting well can be elusive for those who have been ill for years. And there are A LOT of us.
I have a dog in this hunt. I used to be the healthiest guy I knew. I took good care of myself, ate wisely, maintained athletic conditioning all my adult life, and cherished what I thought were longevity genes. In retrospect, I was probably bitten by an infected tick in the late 80s when I lived out Sherwood Road in woods crawling with ticks. I had no rash or other symptoms at the time, but by the beginning of the 90s, developed some ‘weird’ symptoms involving my heart and inner ear function. These seemed to pass with time and some medication, though with no antibiotics and no consideration that I might have Lyme. Then in 2000, I developed severe inner ear symptoms, which ENT specialists could not specifically diagnose. That waned and by the end of 2005, I was back to heavy workouts and jogging, at age 59. By spring of 2006, I was unable to stand for the first several hours of the day without holding on to a walking stick. I’d become totally debilitated with back pain, and hadn’t a clue why. Several months into this misery, I happened upon an old colleague who, when I told him that ‘aging sucks’, suggested that I had Lyme Disease. I replied, ‘no way’! Not me. But it was true. And now, 3 ½ years later, I still struggle with what became far worse than I could ever imagine.
The Lyme disease bacterium loves nerves and cardiac tissue. Brain, nerves, and blood vessels, muscle, and joints become home to this infection. But the symptoms any one person develops are a function of many factors including individual genetics and the role of co-infections. So, late stage Lyme disease can look like anything from nagging aches and pains to devastating brain and life threatening heart syndromes. It’s not only a cause of massive suffering for those with the disease, but it’s virtually impossible for most doctors to diagnose and treat. The reasons for this will be discussed in a future article.
Part 2: THE LYME DISEASE BACTERIUM – NOTHING IS SIMPLE
The bacterial cause of Lyme disease is called Borrelia burgdorferi, named after Willy Burgdorfer PhD, the researcher who first identified this germ in 1982. This spirochete, a corkscrew-shaped bacterium, is unique in the known bacterial realm because of the quantity of extra DNA it carries that enables it to evade detection and attack from our immune systems. It can change its outer protein coat, thus cloaking itself from immune detection. It also can completely change from becoming a treatment resistant cyst or by totally shedding its outer coat and entering our own cells to set up shop.
Antibiotics generally depend on the activity level of a bacterium; how fast it grows and how often it reproduces. Most of the common bacterial diseases we encounter in medicine are from bugs that reproduce in less than 24 hours. When antibiotics ‘hit’ the reproductive or active metabolic machinery of these germs, they die. This is why when we treat common illnesses such as pneumonia or urinary infections, people usually get better in a few days. The Lyme bacterium, however, has a reproduction cycle as short as a day but as long as about nine months. During a phase of prolonged inactivity, it is very hard to kill. These are some of the reasons that an established Lyme infection can be hard to eliminate.
Additionally it is thought, and there is real data to support this, that the Lyme bacterium eventually takes up residence, almost certainly with other co-infecting bacteria, in what is called a biofilm community. On a microscopic level, the bacteria clump together in a gel-like secretion where they are insulated from our immune system and circulating antibiotics or antibodies. This is their bunker from which they can still wreak havoc by releasing the neurotoxic products of their metabolic life. It’s an evolutionary match – they thrive in a body that they modify to suit their needs. They can suppress our immune systems and alter other vital processes, making us ill, helping them to thrive. They don’t tend to kill us, though they sometimes do. It is a parasitic existence.
In addition to symptoms that stem from inflammation of the brain, nerves, heart, blood vessels, joints, and connective tissue, which the Lyme bacteria cause through multiple mechanisms, we also know that the disease can induce another class of illness called autoimmune disease. Maladies such lupus, multiple sclerosis, and Lou Gehrig’s disease (ALS) can actually be caused by Lyme disease. These diseases are not considered to be curable, but there are many cases in which the autoimmune disease resolves completely when the Lyme disease has been treated – always with long term, high dose antibiotics.
Tests to determine whether someone has Lyme disease are very problematic. The common tests measure levels of antibodies we make that are specific to the Lyme bacteria. But, if the bacteria can hide, change form, immunologically ‘cloak’ itself, and can suppress our ability to make antibodies, a person quite ill with Lyme can have totally negative tests. What commonly occurs though is that after a year or so of antibiotic use, which can render some of the bacteria into fragments that the immune system can recognize, the tests turn positive. The dilemma is that when someone is looking for a diagnosis, an answer to profound suffering, a physician who relies on initial test results might call it wrong and the patient will have no answer and no effective treatment. This is part of what defines the difference between ‘Lyme literate’ MDs who understand the problems with testing and treatment challenges verses non-Lyme literate physicians who, for some very compelling reasons, can’t or won’t manage this disease. The range and depth of this problem is immense and will be discussed in the next article to follow.
Part 3: PROBLEMS WITH TREATMENT OF LYME DISEASE
It is difficult enough for someone suffering debilitating symptoms due to late stage Lyme disease to get well with the judicious but adequate use of long term antibiotics. And, almost no one gets better without these. But to deny patients access to this care is a travesty. But this happens all the time and patients often travel hundreds to thousands of miles to see one of the small numbers of Lyme experts in this country. How can that be?
Doctors are taught to practice medicine that conforms to ‘guidelines’ thought to be consistent with the best approaches to disease, based on what is known about the disease and effects of treatment. These guidelines are usually produced by the professional and academic organizations that represent specialty knowledge in medicine. Guidelines for evaluation and treatment of Lyme disease are issued by the Infectious Disease Society of America, or IDSA. Actually, the guidelines have been created by a small number of ‘experts’ in the IDSA. There are a few punch lines to their conclusions. One is that the disease is hard to catch and easy to treat. Another is that anyone with Lyme disease who has persistent symptoms after a several week course of treatment with antibiotics no longer has Lyme disease and should not be treated with more antibiotics as this just increases risk of untoward side effects and produces no clinical improvement. They conclude that many sufferers of neurologic and psychological symptoms from late stage Lyme disease are simply deluded or depressed and should be referred for psychiatric evaluation.
Because the IDSA guidelines have been embraced by medical boards in most states, physicians risk losing their licenses to practice if they do not follow these guidelines. This is a primary reason why effective care is limited. The few physicians who have braved threats to their licenses and actually taken on the challenge of getting Lyme sufferers well have found that most patients can be helped, if not made well, by the careful use of long-term antibiotics. Many have found that it often takes one to three years of antibiotics for these patients to turn the corner. It is now understood why that is, but this has not yet changed the position of the IDSA guideline creators.
We also know that the same folks who issue these guidelines have HUGE conflicts of interests in this realm. One has ownership of the Lyme bacterial DNA, several have financial relationships with insurance companies who do not want to foot the bill for this expensive care, one or more have a stake in a new Lyme vaccine, and all of them have professional and economic liability if and when proven wrong. It is the experience of scores of physicians treating many tens of thousands of Lyme sufferers over the last 25 years that they are, indeed, dead wrong. There is an increasingly massive pile of literature that supports the science and clinical management of late Lyme, flying in the face of the ‘guidelines’. And, in the past year, the IDSA has been legally challenged by the Connecticut Attorney General for creating guidelines in a manner that was both ethically and scientifically flawed. This affords some hope for the future.
Another pressing reason why most doctors do not want to treat late Lyme disease is that it is a phenomenally difficult thing to do. Testing is deeply flawed and expensive. Response to treatment is slow and peppered with setbacks. Treatment is expensive and patients often suffer with horrendous debilitating symptoms. As a prior ER doctor who liked to sew up wounds and send repaired folks home, I know it would take a very special demeanor to rise to this challenge. I don’t think I’d want to manage a case as complicated as my own!
In these recent columns, I’ve shared a minuscule and space limited fraction of what I learned during the past three and a half years of living with late Lyme disease, as a patient and as a physician. There is so much more. Stay tuned.
Part 4: PHENOMENAL COMPLEXITY
What are the symptoms of late-stage Lyme disease complex? I use the term ‘complex’ because the spectrum of symptoms are most often caused by the Lyme germ, Borrelia burgdorferi, AND other co-infecting pathogenic organisms that the ticks carry and transmit. With names such as Babesia, Bartonella, Mycoplasma, and Anaplasma, these pathogens can dramatically contribute to the degree of disease and complexity of diagnosis and treatment in infected individuals. So, as the immune system loses control of these bugs, they spread and cause inflammation, as well as release toxic molecules that cause symptoms and injury to cells and organs.
With so many different possible combinations of infecting organisms and degrees of immune system compromise, the list of potential symptoms is very long. While one person might just have waxing and waning joint pains, another could be totally disabled with neuropathies that interfere with the ability to walk or even to stand. Some become blind from blood clots in the eyes and some are so fatigued that getting out of bed each day might not be possible. Many are plagued with the dreaded ‘brain fog’ and some develop what appear to be well-known psychiatric diseases such as bipolar disorder and severe depression. But, these patients need antibiotic treatment as much or more than anti-depressants and other psych meds. Many patients develop severe pain syndromes involving the back and legs, though involvement can be anywhere in the body. Some patients lose intellectual ability, hearing, the ability to sense heat from cold, and coordinated movements. Most develop insomnia, and many get disabling pain in their feet. Fevers, chills, sweats, dry cough, and body aches can make it seem that some sort of ‘chronic flu’ is going on. Lyme disease can cause life threatening cardiac abnormalities. And the list goes on.
Some patients have only several symptoms and some have scores. It is no wonder that non-Lyme literate physicians either roll their eyes at the prospect of taking care of a Lyme patient or they simply refuse to believe that this constellation of symptoms is an active and treatable infectious disease. It is so much easier to believe that these patients have psychiatric disease (‘it’s all in your head’ type illness) or suffer the aches and pains of aging and a low pain threshold (whiners). It makes the doctor’s life so much easier. Just say no. And believe me, as I said before, I would not relish the notion of taking care of a patient with as complex a disease as my own.
And it’s not even that simple! We now know that in addition to the major germ types listed above, there are dozens to hundreds of genetic variations of these organisms. This introduces a level of diagnostic complexity that is mind-boggling. Physicians faced with a bad disease and complex long-term, sometimes dangerous treatment need as much diagnostic data as possible to justify a treatment plan. But testing for these pathogens is almost a lost cause to date. There are only a few tests for these bugs, and they miss most of the genetic variants. The tests are very meaningful and helpful when positive, but meaningless when negative. We simply cannot ‘rule out’ an infection with a negative test. Physicians who believe otherwise are wrong, if not downright negligent. But wait, there’s more!
It’s not just the bugs that determine our illness. Our unique immune system genetics and dysfunction play a large part creating the spectrum of symptoms we develop. It has been found that some genetic types tend to develop more severe disease than others, including subtypes that cannot get well. Some are more prone to creating antibodies that make us ill by attacking our own tissue and some have impaired ability to break down and excrete bacterial toxins. These are some of the reasons that one person’s Lyme disease doesn’t look like another’s and why we need Lyme experts to manage sick patients. Lyme expertise will be discussed in a subsequent article.
Part 5: EXPERTISE
I am not a Lyme Disease expert. I am a physician with Lyme for many years, though I didn’t know I had it until 2006. As a problem solver by training, profession, and natural bent, I’ve tried to learn everything I could about this realm so that I might get well. After thousands of hours of reading, speaking with true Lyme experts, speaking with fellow sufferers, poring over books, studying treatment protocols, listening to Lyme advocates, exposure to ‘alternative’ treatment approaches, and attending Lyme meetings at the local and national levels, I’m still not an expert. Not even close.
The real experts are the men and women who devote their medical practices to caring for Lyme patients day in and day out. These are the doctors and other trained and skilled practitioners who witness the myriad presentations, profound suffering, and diagnostic and treatment challenges of Lyme patients and for whom continuing education is an hourly event. They have spent years with hundreds to thousands of patients apiece for the sort of on-the-job training required to hone the diagnostic and therapeutic skills needed to give Lyme patients the best shot at recovery. They must nourish the personality traits that foster sanity and wellness of the healer in the face of devastating and tormenting illness in their patients. Open mindedness, critical thinking, as well as creative thinking are facets of their intelligence. And ideally, they cannot allow the morbid state of their patients to harden their hearts to the human condition. So, they’re good people who know a phenomenal amount and have a depth of experience with the disease that is earned over years and decades.
Of course, the same could be said of any physician who has devoted himself or herself to caring for the sick with other diseases, but in this case, Lyme practitioners generally don’t have non-Lyme patients. There simply is no time. Each patient is very time consuming. If time is not spent listening, really tuning in to what patients are saying, they cannot be adequately or competently cared for. And, we have A LOT to say. Most of us have multiple symptoms that change over time and with responses to treatment that are another story to be heard and dissected to fully understand what’s going on. More time must be spent carefully weighing treatment options. There is no one way or right way to treat Lyme disease yet.
That makes the treating doctor’s job even more difficult. Add back into the mix the problems with testing limitations, and you have a challenge that only a rare physician would want to embrace. Some Lyme doctors have Lyme disease themselves, or in family members. And lastly, these healers must labor under the potential threats from state medical boards that have signed on to the story, promulgated by the Infectious Disease Society of America, as well as the CDC, that this disease is hard to catch, easy to treat, and that patients who have symptoms after a brief course of antibiotics are whiners, fakers, whackos, or have other relatively simple diseases. The doctor might lose their license for taking care of some of the sickest patients anyone has ever seen.
I must share another perspective on the stance that the IDSA and its followers have taken on late stage Lyme disease. This is a purely logical analysis revealing a huge flaw in reasoning, the consequence of which is a tragic increase of suffering in our world. It comes down to this – there is nothing in the published literature on Lyme that eliminates the possibility that a single individual might have persistent active infection after a brief (up to several months) course of antibiotics. In fact, there is considerable research to support this conclusion, including papers published by the IDSA guideline creators themselves. Lyme experts know that years of antibiotic treatment helps many late Lyme sufferers to get well. If this can be the case for a single individual, there is no reason it cannot be true for two people. Or two hundred, or two thousand. And how can a doctor who has never treated that patient know that this cannot be the case? You see where I’m going with this? The IDSA guidelines are invalid from this purely logical reasoning.