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CHAPTER 1

THE TICK: NATURE'S DIRTY NEEDLE

My naturopathic medical practice is located in southern New Hampshire, one of the most tick-infested areas of the country and one with a high rate of tick-borne disease. About halfway through writing this book, I went to work one day to find that eight follow-up patients had canceled and rescheduled. This number of reschedulings almost never happens in my office, but the coincidence brought in several very ill patients who otherwise would have waited two to three months for an appointment. When we saw the cancellations, my amazing staff got on the phone to call people on the waiting list, and within an hour we had three new patients. They represent the types of new cases we see in a typical day at the clinic.

The first patient was in her thirties, and three years earlier she'd run the Boston Marathon and worked full time in a successful career. She now suffered with chronic complaints, with her main symptoms being chronic joint pain, stabbing nerve pain, and widespread muscle pain. She reported that she had once been a very balanced person but had struggled with obsessive dark thoughts, anxiety, depression, and debilitating fatigue for the past two years. She also suffered from chronic insomnia, brain fog, sweats, rashes, hair loss, lumps under her skin, foot pain, and dizziness.

Her primary care provider (PCP) diagnosed her with anxiety and depression and prescribed medications for mood. When the patient asked her PCP to look further into tick-borne disease, the doctor refused and told her she was depressed due to her inability to have children. She asked several times to be tested for Lyme disease and other tick-borne infections but was denied because the doctor felt she was just depressed. After many visits to the doctor trying to get help with her symptoms, the patient sought a second opinion. Her lab work showed positive for Lyme disease, and we started treatment. By the next visit, approximately eight weeks later, she reported significant improvement in her mood as well as reduced pain, and she was back in the gym running again. She is still undergoing treatment for some lingering symptoms, but her quality of life has improved dramatically.

The second new patient of the day was a nineteen-year-old male who had been an Eagle Scout and straight A student up until the day, two years earlier, he woke up in the middle of the night with intense sweats and fever; he'd been suffering from overwhelming fatigue ever since. He was tested at the time and was positive for Lyme disease, but his doctor was unwilling to test coinfections. He was treated with three weeks of antibiotics at the time of initial symptoms, two years earlier. Any further treatment with antibiotics was denied.

The patient did see several specialists, including an infectious disease doctor who told him and his family that he suffered from post-Lyme syndrome and that he should go home to rest for the several months it would take to recover. No treatment was offered. So, the patient followed that advice. He did not graduate from high school, spent most of his days in bed, and was too fatigued to shower on a regular basis. He made changes to his diet, which helped the symptoms somewhat, but he was still not functional. He was unable to read for long periods of time or retain information. Though this patient has been to see many doctors and has tested positive for Lyme disease more than once, he was never given antibiotics after the initial three weeks. After being tested in my office, he was diagnosed as still having active Lyme disease and was positive for Babesia microti. He is recovering, after starting aggressive treatment, but because of his debilitation due to inactivity, he will have a long road to regaining his strength. Full recovery takes, on average, six months to a year, with each person's path being slightly different.

The third patient was a ten-year-old girl who'd made several visits to her pediatrician and the emergency room over a two-year span. She had several episodes of intense abdominal pain and fevers over 104°F (40°C). She also experienced chronic leg pain, headaches, and repeated sore throats with significantly enlarged tonsils. The girl's mother started to notice hair loss and mood changes in her daughter as well. She had asked to have her daughter tested for Lyme disease, but given the girl's abdominal pain, she was referred for a colonoscopy and ended up having exploratory abdominal surgery. Her appendix was removed during the surgery, even though it was not acutely infected. Though her mother had asked the pediatrician to test for Lyme in the past, she was not tested by the doctor and was never screened during any of her visits to the emergency room for a high fever. She was not tested for Lyme disease until two weeks before presenting to my clinic. Her tests were positive for Lyme disease, and we began treating her immediately.

These are three patients who were denied testing and treatment. Three patients who underwent unnecessary medical procedures or were just abandoned. Three patients who suffered because Lyme disease is not taken more seriously. Each of these patients had been to see specialists, including a neurologist, a gastroenterologist, and infectious disease specialists. I'm sorry to say that this is not an unusual occurrence for those who come to my clinic.

Lyme Disease: You Don't Get It until You Get It

You probably bought this book because you or someone you love has been diagnosed with a tick-borne disease. Arriving at an accurate diagnosis may have been a difficult journey. Perhaps you saw several doctors, chasing symptoms, and were given several diagnoses; meanwhile, you collected a binder full of lab reports and just wanted someone to listen to your story and put the pieces together. Your story might involve symptoms that come and go on a day-to-day basis, or even minute to minute. You might be fine in the morning and bedbound with pain by lunchtime. You might need people to understand that the light shines too brightly in a room or a sound is too loud, making it impossible to complete a trip to the grocery store. You may go to work every day, wondering if brain fog will cause you to make a mistake. Or you hand your young child the iPad more often than you like because you are too sick to be the active parent you envisioned.

For most people, the symptoms of tick-borne infections don't end up on the radar until the complaints are persistent and undeniable. The most poignant statement I hear is, "You don't get it until you get it." So, how do we "get" it? Learning how to advocate for yourself is important. You'll need to know how to weed through the polarized views around Lyme disease and be at peace with the process of healing. My goals with this book are twofold: to address prevention of acute Lyme disease and to focus on the physical, mental, emotional, and spiritual aspects of chronic tick-borne disease.

Chronic Lyme disease can mean big changes in daily life, affecting family structure and your ability to work. It can significantly decrease quality of life by compromising your ability to care for yourself, and it can manifest emotional trauma. Lyme disease is a unique illness that is present in broad daylight; we all know it's there and represents a problem, yet those who are sick may feel the need to hide their experiences. Most of the fear and shame patients feel, sadly, comes from their interactions with the medical profession. Healing happens when patient-doctor relationships are healthy and when patients feel supported, believed, and safe in being honest about their health concerns.

The doctor may not even be aware that a breakdown in communication is causing harm, but politics can take over, especially if the patient happens to live in an endemic area such as the Midwest and northeastern United States. The Centers for Disease Control acknowledge that Lyme disease exists, that we all need to take preventive measures to avoid tick bites, and that treatment should follow if a patient walks into a medical office with a bull's-eye rash. Far too often, however, patients are sent away having been told that the tick was not attached long enough to cause a problem or that they should wait to see whether symptoms develop. If conventional treatment is administered, it's rarely adequate, in my professional opinion. Typical treatment time for a bite or suspected bite is ten to twenty-one days of an antibiotic (and sometimes only one dose of doxycycline is given), with patients being refused treatment for longer even if they are symptomatic.

I belong to a group called the International Lyme and Associated Disease Society, affectionately referred to as ILADS. It is a collection of practitioners from around the world who believe that Lyme disease can persist and requires longer treatment time in cases where symptoms continue. Treatments are usually a combination of antibiotics to combat infection and natural medications to enhance quality of life. My practice involves both forms of treatment, and the plan is individualized based on what is best for the patient. The approach used in conventional medicine must change — and it will — but it will take time to dismantle the current belief system that chronic Lyme disease is not treatable. In the meantime, doctors who acknowledge the complexity and individual needs of healing from tick-borne disease are here to help.

One of the biggest risk factors for developing chronic tick-borne disease is a delay in treating the acute infection. Chronic Lyme disease is a complex infection that is treatable, but mainstream medicine has put forth a belief that patients must just live with "post-Lyme syndrome" with no solution.

I see the Lyme disease crisis as man-made, caused largely by the medical community's refusal to treat acute Lyme disease effectively and its denial that chronic Lyme disease exists at all. In addition, human interaction with the environment is creating widespread changes in the climate and ecology that are favorable to tick propagation. Tick-borne diseases are treatable if caught early and treated adequately — and by "adequately," I mean until the infection is resolved. Not when we say it should be resolved, but when the person has recovered in his own unique time. Specific medications and modalities may change throughout the treatment process, but it is critical to stick with a process until the infection resolves. Don't give up! The longer treatment is put off, the more difficult it is to regain optimum health.

When you discover a tick bite, take action and find a practitioner to treat it. You need to treat every tick bite as if the tick was infected. In geographic areas with high tick infestation, patients should be tested yearly for Lyme disease as part of their regular health screening. After all, if you were walking on the beach and stepped on a hypodermic needle, you would be treated with antiviral and antibacterial medications for at least thirty to sixty days to combat the worst-case scenario. A tick, attached for several hours or days, is a nature-made hypodermic needle.

Some people are cavalier about tick bites, just pulling ticks off and discarding them without a second thought. This is most common among people who have been exposed to ticks throughout their lives without perceived consequence. However, the number of infected ticks has exploded in recent decades, and we cannot count on a tick bite being harmless. Given the microbial diversity in the environment, I assume that every tick is infected. Unfortunately, many patients with new bites are turned away from medical clinics and come to see me months later, sick and angry that action was not taken sooner. They wish they had known how to better advocate for themselves.

One problem is that a large percentage of patients don't remember getting a tick bite; finding a tick on their body might have spurred them to go to the doctor right away. I have never seen a tick on my skin, but I have had two confirmed infections. If a patient is lucky enough to notice the bite and find the tick that bit him, he may not have immediate symptoms that prompt him to seek medical care. Whether tick-borne disease is acute or chronic, treating it is critical. Every day, I see patients regain a better quality of life with treatment. In some cases, the road can be long and bumpy, but it's important to be open to all treatment options, be patient with the process, and be willing to make changes in your life that align with healing mind, body, and soul.

The Life and Times of a Tick

When I give lectures describing what happens when a tick bites a human, people start to itch and squirm. It is not pleasant thinking about insects on your body, but if it makes you feel better, ticks are not considered insects. They are arachnids, in the same family as spiders, though more closely related to mites.

Growing up in Portland, Oregon, I didn't have much exposure to bugs. There were some spiders, potato bugs, worms, and the hugest slugs you can imagine. Compared with New Hampshire, Oregon was a cakewalk. I was the typical city girl who was schooled quickly when I moved to the New England countryside, with its ticks, mosquitos, black flies, fire ants, and the green horseflies that literally take a chunk out of your skin. When I first moved to the Northeast, I was even scared of dragonflies, though now they are one of my favorites.

Although people know ticks carry Lyme disease, they typically don't know ticks can also transmit other diseases. And most don't know much about the life of a tick. Understanding the life cycle and tendencies of ticks can help you protect yourself. Ticks live all over the world, with different species having evolved to survive in their particular environment. The most common tick-transmitted infections in the United States are from Ixodes scapularis, also known as the black-legged tick or the deer tick. It lives one to two years and has three physical stages of maturation: larval stage (newly hatched); nymph stage, which is the tick's adolescence period; and adult stage. Ticks rely on blood meals to grow into a new stage of development.

Ticks have been feeding from hosts for more than 300 million years. The species vary depending on location, with Ixodes scapularis most commonly found in the northeastern and north-central areas of the United States and up into Canada; Ixodes pacificus is typically found on the West Coast in the United States as well in British Columbia; Ixodes ricinus occurs in Europe; Ixodes persulcatus is found in Europe and Asia; and other species of Ixodes are found throughout Asia.

Ixodes scapularis is referred to as a hard-bodied tick because of the presence of a hardened cuticle that covers the entire body of a male tick and one-third of the body of a female, giving it the common two-toned elliptical shape on the back. Female ticks, larvae, and nymphs have the ability to grow tenfold in size, in both length and width, with each feeding. The male tick stays fairly small as it feeds because of its denser outer covering. One of the most interesting facts about Ixodes is the minimal time the tick spends feeding in its lifetime. Only two to three weeks of a tick's typically 108-week life is spent actively feeding. Compared with other parasites, ticks spend little time attached to their hosts, feeding only during yearly growth phases and the active reproduction phase in the female.

Newly hatched ticks are barely visible to the naked eye; they have a shape similar to that of an adult tick, with two fewer legs. These are usually free of infection but acquire infections from feeding on small rodents. However, the newly discovered strain of the bacteria Borrelia miyamotoi can be passed from a female tick directly to her larvae, in a process known as vertical transmission. This is the first time vertical transmission has been seen with tick-borne pathogens; this type of transmission will make controlling infection rates within the tick population more difficult, and the infection is likely to spread more aggressively among the population. Tests available from IGeneX and other specialty labs can now identify this strain.

The nymph stage is the most difficult to identify because the ticks are small enough that they are indistinguishable from specks of dirt. You wouldn't feel them walking on you and brush them off, and this stealth means they are also the most dangerous. They are the reason most people have no idea they have been bitten. An adult tick can be the size of a poppy seed. The strain of Lyme or other tick-borne disease a tick carries will depend on the species of tick and its geographic location. Certain strains of Borrelia (the genus of bacteria that includes the species that causes Lyme disease) are more apt to present with neuromuscular symptoms, while others are more likely to have relapsing fever as a symptom.

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Excerpted from "Rising Above Lyme Disease"
by .
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