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CHAPTER 1

The Lyme Trap

When life kicks you, let it kick you forward.

Kay Yow

You're Not Alone in the Lyme Trap

If you've had to manage chronic symptoms of Lyme disease, you understand the title of this chapter perfectly. There are hundreds of thousands of people worldwide stuck in the Lyme Trap — working to get well and trying to live a meaningful life despite having a debilitating disease that robs them of everything they hold dear. For these people, Lyme leads to untold pain, loss, and suffering — with little consensus from the medical community on how best to help. The purpose of this book is to show you how Acceptance and Commitment Therapy (ACT, said as one word) can help you escape the Lyme Trap and lead a richer, more vital, and more meaningful life while you're on your journey to wellness.

Lyme is a tricky disease that's surrounded by controversy in all facets of the illness — transmission, diagnosis, and treatment. You may be all too familiar with these issues already, but it's worth reviewing them for newcomers, professionals, caregivers, and family members. This chapter alone could be an entire book (several books in fact), but I'll do my best to present the most important information in a clear, concise, and unbiased way. I strongly encourage you to educate yourself about this disease as much as possible. I have included a list of excellent resources later in the book to help you do this. However, in the spirit of escaping the Lyme Trap, this chapter will give you a sufficient overview.

Because the medical and political aspects of this illness are incredibly complex, the best way to understand them is often through case examples. The case of Diane illustrates why Lyme can be so difficult to cope with, diagnose, and treat.

The Lyme Trap in Action: Diane

Diane is a 34-year-old woman who has worked in an advertising agency since she graduated from college 12 years ago. She is married and has two children, a 4-year-old daughter and 2-year-old son. Diane was an energetic, intelligent woman who was highly valued for her skills by her employer. She had a wide network of friends and was close to her family. She loved to hike, camp, bike, run, and spend time outdoors. She was fit, healthy, and had no history of any medical or mental health problems. She was, for all intents and purposes, perfectly healthy and quite happy with her life.

Like any mother of two young children, she was often tired by the end of the day. However, she noticed that her fatigue was worsening. She became increasingly tired earlier in the day, often to the point of almost falling asleep at her job. She struggled to maintain her regular exercise routine. Where she used to run 3 miles without a problem, just walking around the block became a painful chore for her. Her thinking was clouded. She had difficulty finding words, couldn't concentrate, and her creativity had all but abandoned her. She was feeling soreness and pain in her joints and often had tingling sensations in her limbs, hands, and feet. She felt irritable, despondent, and anxious, sometimes having full-blown panic attacks that would last for extended periods of time.

Diane finally sought the advice of her primary care physician with whom she had a long and trusting relationship. Her doctor ran all of the usual blood tests, including a Lyme test, all of which came back negative. Her doctor could not seem to find any evidence of a medical cause for her symptoms. She sent Diane to a series of specialists, including an infectious disease doctor, all of whom ran additional tests. None found any medical reason for her symptoms.

Diane grew increasingly frustrated. She was forced to take a medical leave of absence from her job and wasn't sure when — or if — she would return. She was less and less able to be involved in the day-to-day care and activities of her children. These responsibilities fell more and more to her husband who was feeling distressed and overburdened. Diane and her husband began fighting frequently, a dynamic that had never really existed in their relationship before her illness.

Finally, Diane's doctor suggested that some of her symptoms might be psychiatrically based and referred her to a psychiatrist and a therapist, both of whom diagnosed Diane with major depression. The psychiatrist prescribed antidepressant medications and the therapist worked hard with Diane to improve her symptoms, but she did not experience any real progress or feel any better.

She and her husband began researching her symptoms and were coming to believe that, despite her negative lab work, Lyme disease might be at the root of her problems. She raised this issue with her primary care and infectious disease doctors, both of whom informed her that because she tested negative for Lyme, that simply couldn't be the problem. When Diane questioned the accuracy of the tests, she was referred back to her psychiatrist. But Diane felt strongly that her symptoms were not psychiatrically based.

Further research on Diane's part uncovered the existence of a controversy in medicine about the diagnosis and treatment of Lyme disease. Apparently, some doctors believed current testing methods to be inadequate. Moreover, they claimed that some instances of the disease could be chronic in nature, often requiring long-term high doses of antibiotics, sometimes intravenously, for adequate treatment. This was in direct contrast to the established guidelines for the treatment of Lyme, which were being followed by her medical providers.

Diane was at a loss. She was receiving one set of advice from her current doctors that seemed contradictory to what some other doctors would recommend. She wanted to seek advice from some of these other Lyme specialists, but their waiting lists were very long, most of them did not take insurance, and their fees were often very expensive. Money had been tight since her medical leave, and she could not afford to see one of these doctors for a second opinion.

In the midst of all of this, Diane's symptoms continued to get worse, not better, and she was experiencing unpleasant side effects from the psychiatric medications she was taking. She didn't know what to do or where to turn. It seemed as though everyone who was treating her had the best of intentions, but she simply wasn't getting better and couldn't afford the possibility of other treatment.

Diane was stuck in the Lyme Trap.

Lyme Disease: Controversies and Confusion

Diane's case may seem extreme, but unfortunately it is all too common. She is very much caught in the Lyme Trap — unable to get the treatment she may need and feeling unable to live her life until she gets well. The division in medicine regarding this illness is a significant contributing factor to Diane's circumstance. While it's possible that her symptoms are psychiatrically based, there are factors that are inconsistent with this diagnosis (lack of history, no triggering events). Moreover, as any responsible behavioral health professional would tell you, always rule out medical causes for psychological problems first. Diane tested negative for Lyme disease, so why would any reasonable health professional advocate pursuit of further treatment for an illness she did not have? If doctors agreed to every patient request based on what was read online, health care costs would skyrocket even higher than they have already. Yet, there are respected medical professionals who question the accuracy of the testing used and the conclusions Diane's doctors have reached. Who does she believe? What should she do?

There are no easy answers to these questions. Clearly, there are multiple medical, scientific, and political factors that affect the diagnosis and treatment of this illness. It's not the purpose of this chapter to argue one point versus the other, nor is it my intention to convince you of any particular point of view. My goal is to simply put forth factual information to highlight the overall problem. You need to decide what the best course of action is in your particular circumstance. This can be hard, but I'll talk a lot more about how best to make decisions later in the book. For now, let's cover the basics and begin building the foundation for escaping the Lyme Trap.

Transmission of Lyme

People contract Lyme disease when they are bitten by ticks that carry the Lyme bacteria, technically referred to as Borrelia burgdorferi (B. burgdorferi), named after Willy Burgdorfer, who discovered the bacteria in 1982 (Burgdorfer, 1993). Ticks are a type of arachnid, and they feed on the blood of small and large mammals, such as mice, squirrels, other rodents, and of course deer and people. As ticks attach themselves to these animals, they can both pick up and transmit B. burgdorferi through the blood of the host (Embers et al, 2013). There are many types of ticks, but Lyme is mostly associated with the deer tick. There is some debate as to whether or not other types of ticks, such as dog ticks, transmit the infection. But most scientific research indicates that deer ticks are the primary mode of disease transmission (Piesman and Happ, 1997; Magnarelli and Anderson, 1988). There are many questions about whether or not transmission can also occur via other means, such as sexual contact, childbirth, and mosquito bites to name a few, but the scientific studies to support these concerns are limited or non-existent.

Regardless, once the bacteria enter the bloodstream, they start to do considerable biological damage. B. burgdorferi is what's known as a spirochete. The bacteria have a corkscrew shape that allows them to bore into the cells of the body, disrupt the functioning of those cells, and cause the symptoms of Lyme that can be so devastating. B. burgdorferi does not discriminate against what kinds of cells it will invade. It often settles in the joints but can also infect organ tissue, other soft tissue, and the nervous system. This is what accounts for the wide range of symptoms one might experience with this illness, earning Lyme the moniker "The Great Imitator" (Pachner, 1989; Burdash and Fernandes, 1991; Stechenberg, 1988).

The problem does not end with Lyme disease, however. Ticks carry all sorts of nasty bacteria, many of which can cause significant simultaneous difficulties that often get lumped in with Lyme disease. Babesiosis, Ehrlichiosis, Bartonella, and a host of other diseases can be carried and transmitted by ticks. As such, the co-infection rate of Lyme with other bacteria is quite high (Berghoff, 2012). These infectious diseases are often referred to collectively as tick-borne diseases (TBDs). Co-infections are particularly problematic because they may complicate diagnostic and treatment procedures.

How Common Is Lyme?

This question, like most having to do with Lyme, has no clear answer. Based on reports of laboratory testing, the Centers for Disease Control estimates that between 240,000 and 444,000 infections occurred in the United States in 2008. Based on medical claims to insurance companies between 2005 and 2010, the estimated number of people diagnosed with Lyme was between 296,000 and 376,000 per year. This represents approximately a tenfold increase of previous CDC estimates of infection rates. By any measure, this qualifies Lyme as a major public health concern (CDC, 2015).

The disease is not specific to the United States, however. Infection rates from various sources indicate the presence of TBDs in over 80 countries (Companion Vector Borne Diseases, 2013; Lyme Disease Association, 2013). According to the World Health Organization and the European Centre for Disease Control, the number of Lyme cases has been increasing steadily across Europe, with approximately 360,000 cases reported in the last two decades (WHO, ECDC, 2014).

This seems straightforward enough, but assessing the number of people infected with Lyme is complicated by the controversy over the guidelines that should be used for diagnosis. Many physicians reject the CDC diagnostic guidelines on the grounds that they are too stringent, thus underestimating the total number of actual cases. Additionally, there is controversy regarding the accuracy of the routine blood work to determine a diagnosis of Lyme disease, further clouding the diagnostic process and the calculations of Lyme's actual prevalence (Columbia University Medical Center, 2014). If any of these factors are at all relevant, the number of people infected with Lyme could be considerably higher than the CDC or WHO/ECDC statistics suggest.

What is clear is that the incidence of Lyme has increased considerably over the years. This is due to multiple factors. As additional lands become developed and people live and are active in more rural areas surrounded by woods and the creatures that live in them, the risk of exposure and infection increases. Lyme has been receiving considerable attention in the media of late for all of these reasons and others, fueling greater emphasis and attention on the disease. In short, Lyme disease is the fastest-growing infectious disease in the country, and many physicians and public health officials consider it to be nothing short of an epidemic (Horowitz, 2013).

Symptom Presentation

Once the Lyme bacteria enter the bloodstream and infiltrate cells of the various bodily systems, symptoms will begin to appear. Often infection is accompanied by a rash at the site of the tick bite called the erythema migrans (EM) or "bull's eye" rash, so named because it can look like a red bull's eye on the skin. The EM rash is used as criteria for a Lyme diagnosis, but it's not always present or it can be located in an undetectable area, such as under hair. While there are blood tests to determine the presence of Lyme, many physicians estimate that these routine blood tests can miss 35–50 percent of positive cases (Horowitz, 2013). The controversy regarding the accuracy of these tests means that a Lyme diagnosis is often made clinically, based predominantly on symptom presentation. Conversely, many physicians de-emphasize the clinical presentation and rely more heavily on the lab test results. This split in diagnostic criteria further adds to the confusion regarding the incidence of Lyme.

As you saw in Diane's case, the symptoms can be multi-systemic, quite varied in their presentation, and can be easily mistaken for a host of other problems. Symptoms of Lyme can include extreme fatigue, joint swelling/stiffness/pain, persistent headaches, sleep disturbance, mood disturbance (depression, mania), poor attention and/or concentration, cognitive impairment (difficulty thinking), sexual dysfunction, urinary symptoms, gastrointestinal problems, visual disturbances, irritability (sometimes leading to outbursts of rage), skin rashes, numbness or tingling sensations, Bell's palsy (facial drooping), anxiety or panic attacks, neurological impairment, swollen glands, fever, sore throat, unexplained back pain, muscle weakness, forgetfulness, speech errors or word-finding problems, psychosis, and light or sound sensitivity (Horowitz, 2013). Most people experience some cluster of these symptoms. As you can see, the potential disability caused by this illness is staggering.

Lyme Disease and Psychiatric Symptoms

The psychiatric implications of Lyme disease are poorly understood and not extensively researched. It is without question that Lyme disease can infiltrate and affect the body's nervous system, both central (brain and spinal cord) and peripheral (all other nerves in the body), meaning that Lyme can affect any of the body's voluntary or involuntary functions. The impacts of Lyme on various areas of functioning in the nervous system are well documented. There are extensive case examples of neuroborreliosis, the technical name for a Lyme infection of the nervous system, that illustrate the devastating impact of this condition.

What's less understood are the relationships among Lyme disease, depression, anxiety, mood swings, rage, and psychosis (Bransfield, 2012; Fallon et al, 1993; Fallon et al, 1995). This is an important topic that is worth some exploration because there's a powerful difference between being depressed or anxious because you have a disease versus being depressed or anxious as a result of the disease. There are many case examples to support the existence of mental illnesses as a symptom of Lyme rather than a consequence of it. However, differentiating between these possible causes of psychiatric symptoms can be very difficult, if not impossible. This is particularly important for mental and behavioral health professionals who work in tick-endemic areas and may encounter symptom presentations that look like psychiatric conditions but may actually be medically driven by the Lyme (or other TBDs) bacteria in the nervous system. It is also important if you're suffering from the illness to know and understand the difference to the best of your ability so you can make the best possible decisions regarding your care.

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Excerpted from "Living Beyond Lyme"
by .
Copyright © 2017 Joseph J. Trunzo.
Excerpted by permission of John Hunt Publishing Ltd..
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