Mark Bailey’s Story
Mark Bailey has lived a life of adventure, but considers hiking the Appalachian Trail (AT) the most dangerous and unhealthy thing he’s ever done. That’s saying a lot from a man who has sailed around the world three times as a ship’s engineer and voluntarily spent a night in a Philippines prison to avoid the New People’s Army in 1981. Bailey’s path to the AT began following retirement from a career on the high seas. He first logged some time on roads, spending three years touring North America on a Gold Wing motorcycle, camping on the side of the road and staying in hostels.
Following an accident in Buffalo, New York that wrecked his bike, Bailey decided to leave the roads for a while and take up long distance hiking. He discovered the AT on the internet and, in the spring of 2000, began a thru-hike from the southern terminus on Springer Mountain, Georgia. Months later, Bailey dropped out in Hanover, New Hampshire from chronic fatigue, an unusual circumstance given his familiarity with long hours of hard manual labor in a ship’s engine room. Even more unusual was that Bailey’s life of adventure ground to a halt not from towering waves, bike wrecks, or civil unrest, but from the bite of a tiny tick.
I first met Bailey while thru-hiking the Pacific Crest Trail (PCT) in 2007, where through much of southern California I passed and was passed by him and Billy Goat, his hiking partner. Bailey introduced himself to me by his familiar trail moniker, Captain America (adopted from his years touring on the Gold Wing), keeping his and Billy Goat’s true names a secret like a couple of comic book superheroes. I instantly found Bailey to be likable, captivating those around him with stories of his world adventures and looking a little like Charles Darwin with a long wispy white beard, a ruddy face, bushy brown and gray eyebrows, and a mop of dark hair partly covered by a black stocking cap. In fact, the only recognizable difference between him and Darwin was his GoLite jacket.
The last time I saw Bailey that year was with Billy Goat, camped high on a ridge above Silverwood Lake, California on a very windy evening. The two of them were enjoying the sunset, and Bailey was singing the praises of his Granite Gear pack. Knowing that I’d probably be getting ahead of them for good, I dug out a scrap of paper from my pack and took down Bailey’s phone number and email, tucking the information safely in a Ziploc, but not very confident that I’d ever get any email or a call. Mark Bailey just didn’t seem like the kind of guy who did a lot of that.
I ended up running into Bailey the following year at the Appalachian Long Distance Hiker’s Association annual gathering in West Virginia. I almost didn’t recognize him. Gone was the snowy white beard and the trail clothes. Bailey was short-haired and clean-shaven, dressed in a checked shirt and slacks and looking very much like a businessman on vacation. He gave a presentation that weekend on his trip through Canada along the International AT. Bailey’s trip along the IAT had ended rather suddenly and for reasons that weren’t exactly clear in the presentation. Talking with him afterward, I learned that Bailey had been experiencing bouts of chronic fatigue for years and it was one such bout that forced him to take time off. When I asked him how such an accomplished hiker and adventurer such as himself could struggle with chronic fatigue he looked at me and asked, “Have you ever heard of Lyme disease?”
Falling Through a Black Hole
Bailey doesn’t like to talk about his experience with Lyme, a disease that occupied the center of his life for many years after his initial attempt of the AT. He has, in fact, taken steps to eradicate the memories, disposing of stacks of meticulously-kept journals recording his many visits to doctors, lab results, and treatment regimens. Only when I told him that I was planning to write an article about Lyme disease for a backpacking audience did Bailey agree to tell his entire story, with the hopes of helping others avoid what he went through.
The Bear Mountain Bridge.
Bailey recounts his experience during and after the AT as if he were describing a fall through a black hole. Bailey was bitten in early June of 2000, shortly after reaching Duncannon, Pennsylvania with a hiking partner he’d met along the way. Bailey recalls, that evening, feeling something unusual on the back of his shoulder and when he asked his partner to check it out, she passed it off as a mole. Thinking nothing more of it, Bailey continued northward until, after several weeks, he began experiencing problems with swelling in his left knee. Never having had knee problem in his life, Bailey soon found himself in constant pain.
After hobbling over the Bear Mountain Bridge to the Graymoor Friary in Garrison, New York, Bailey took eight days off, treating his knee with the time-tried formula of rest, ice, compression, and elevation. He also made a trip to the local hardware store to pick up two paint roller extensions, which he fashioned into trekking poles. Never having thought of himself as someone who needed poles, Bailey found that he had little choice but to rely on them if he wanted to continue to hike.
The poles helped a little, but by mid-July, after passing by Kent, Connecticut, Bailey began experiencing chronic fatigue, which caused him to spend an increasing amount of effort to make miles that were, by that stage, routine for other thru-hikers. He remembers how difficult it was to get rid of the fatigue. “Long distance hikers,” Bailey notes, “are used to being tired after a long day of hiking, but chronic fatigue is a special kind of tired. Often, when you’re tired, you take a nap and after the nap you wake up and feel refreshed. With chronic fatigue, you wake up and you’re just as tired as when you went to sleep. Sometimes, you’re even more tired.” Bailey labored into Massachusetts where he tried to stop by a health clinic, but was told it would take three days to see a doctor and five days to get the results of any tests. Not willing to wait, Bailey pushed on, suffering from constant exhaustion and remarkably reaching the fringe of the White Mountains in Hanover, New Hampshire on August 8th. It was here that Bailey finally had to quit. “I was too tired.”
After exiting the trail, Bailey began to feel a little better and made his way to his home in Orlando, Florida, then up to his parent’s home in North Carolina. On the morning of his second day at home, Bailey woke up to find that he could not get out of bed. “I was devastated,” he recalls. A local physician tested his blood for Lyme and mononucleosis, but both tests came back inconclusive. Bailey was nonetheless given a three-week supply of the antibiotic Doxycycline. It worked. Bailey was, for the first time since his struggles on the AT nearly a month ago, relieved of chronic fatigue. “I was cured!” Bailey exclaims.
Revitalized, he traveled to Vermont to visit his girlfriend and three weeks later returned to Orlando, visiting a local physician to get his doxycycline prescription renewed. The Orlando physician, upon hearing Bailey’s story, promptly diagnosed him with depression and instead prescribed Prozac, declining to refill the doxycycline prescription. Bailey’s chronic fatigue had, of course, returned and he again began struggling, many days unable to get out of bed or to muster enough energy to get through the day awake. Bailey describes the experience as “…falling off a deep, dark cliff. I was always in control of my environment, and now this thing was controlling me. It was frightening. I’m a world adventurer and I found myself in bed watching Martha Stewart!” Trusting his doctor’s diagnosis, Bailey took steps to treat his depression, starting an exercise program involving running and pushups. Some days, Bailey recalls being able to run around the block. Other days, he could only manage a few steps. As for the pushups, Bailey soon found himself in an orthopedist’s office with a painful shoulder. The orthopod diagnosed Bailey with a frozen shoulder, a condition that typically affects women over forty.
In November of the same year, Bailey went to see an infectious disease specialist and by December he had received an official diagnosis of Lyme disease. He was restarted on doxycycline, but continued to suffer from chronic fatigue. His doctor eventually doubled the dosage of doxycycline, but to no avail. Over the next four years Bailey would receive a host of powerful antibiotics, some intravenously through a central catheter in his upper arm. He saw multiple specialists and received additional tick-related diagnoses of Rocky Mountain Spotted Fever and Ehrlichiosis, depending on whether his blood was sent to state, federal, or commercial lab facilities. “It was a nightmare,” Bailey recalls.
In early 2005, nearly five years after his tick bite and still suffering from chronic fatigue, Bailey decided to give up on the antibiotics and started taking probiotics on his own. By July, Bailey was feeling better and checked out of his Orlando apartment, destroying the piles of journals and records he kept to detail his years of suffering. He doesn’t regret the loss, and says “Part of casting off this nightmare was to get rid of all Lyme memorabilia.” Lyme disease permanently altered Bailey’s life and today continues to affect both his and the lives of thousands of other Americans.
Lyme by the Numbers
Of all the diseases spread by ticks in the United States, Lyme is the most prevalent and has been growing at a steady clip. According to a 2008 surveillance study by the Centers for Disease Control (CDC), there were 19,931 reported cases of Lyme disease in the United States in 2006, an increase of 101% over the fifteen-year study period. While Lyme disease has been reported in nearly every state, it is a highly regional problem, and 93% of all cases in the CDC study were concentrated in ten states: Connecticut, New York, Maryland, Delaware, Minnesota, Wisconsin, Massachusetts, Pennsylvania, New Jersey, and Rhode Island.
Where Lyme disease is… and where it isn’t.
|District of Columbia||2.9||1.7||10.7||19.7||12||North Dakota||0||0.5||1.1||1.9||1.2|
The bacterial spirochete that causes Lyme, image courtesy of the CDC.
Lyme disease was first identified in 1977 from a mysterious outbreak of arthritis among children living near Lyme, Connecticut. By 1981, a bacterial spirochete named Borrelia burgdorferi had been identified as the causative agent. B. burgdorferi naturally occurs in a number of small mammals and is transmitted to other mammals, including humans, by the bite of Ixodes scapularis or Ixodes pacificus, known as the black legged or deer tick. The tick acquires the bacteria through feeding on an infected host’s blood and subsequently transmits the bacteria to another host during its next meal. (Deer themselves are not amongst the mammals that naturally carry the bacteria in their blood, but are partly responsible for transporting the tick.) For a human to be infected with B. burgdorferi, a tick must be attached for no less than than twenty-four hours. The CDC reports that Lyme has its highest incidence in children aged five to nine years and adults aged fifty-five to fifty-nine years, with lowest incidences reported amongst adults aged twenty to twenty-four years. Lyme tends to be found in men more than women by a slight margin.
Lyme disease in humans has several stages. In its early stage, Lyme is often characterized by a mix of flu-like symptoms which can include headache, fever, chills, muscle ache, joint pain, stiff neck, fatigue, and a curious skin rash called “erythema migrans” (EM). These symptoms can begin to occur from as few as three to as many as thirty days following a bite from an infected tick. In rare cases of early Lyme disease, the heart and brain can be affected, causing arrhythmia, meningitis, or nerve paralysis.
Black legged tick, image courtesy of the CDC.
Most early-stage Lyme disease can be completely cured through use of appropriate antibiotics. Lyme disease that is ineffectively treated in the early stage can progress to a late stage, causing potentially disabling neurological and cardiac problems. A third stage of Lyme disease, called “post-Lyme syndrome” or “chronic Lyme disease,” is a condition involving persistent Lyme symptoms despite initial treatment with appropriate antibiotics. Published estimates place the incidence of the syndrome at 5-15% of people who have received treatment for Lyme. Post-Lyme syndrome/chronic Lyme disease is a subject of significant and heated controversy. There is vast disagreement in both the medical and non-medical community as to the cause, nature, and appropriate course of care for individuals who suffer from post-Lyme syndrome, a discussion of which is beyond the scope of this article. For readers interested in learning more about the controversy surrounding post-Lyme syndrome, this author recommends the June 17, 2001 New York Times Magazine article titled: “Stalking Dr. Steere Over Lyme Disease.”
For the majority of Lyme disease cases, prompt diagnosis and treatment in the early stage is of utmost importance for preventing disability and suffering. Unfortunately, accurate diagnosis has proven to be a hurdle for community physicians nationwide. One reason is that the most common and highly diagnostic sign of early Lyme disease, the EM rash, often goes undetected. The CDC’s 2008 surveillance study found that EM was present in 69.2% of Lyme cases. These cases were provided to the CDC by state and local health departments as a part of a nationwide surveillance program. In contrast, a June 2009 study out of The Johns Hopkins University in Baltimore reported that EM was present in a much higher 87% of its Lyme cases, selected from nearby community clinics. The Hopkins researchers were Lyme specialists looking specifically for EM and other signs and symptoms of the disease. The discrepancy in EM numbers between the CDC and the Hopkins studies suggests that community physicians around the country are often missing EM. A missed EM rash will significantly reduce the likelihood of making an accurate Lyme diagnosis.
Identifying the EM Rash
Example of Erythema Migrans (EM), the most common initial symptom of Lyme Disease. Image courtesy of Dr. John Aucott.
One of the problems in identifying EM is the long-held stereotype about what EM looks like. The EM rash associated with Lyme disease has traditionally been described as a bulls eye, with a red center point, a clear space around it, and an outer circular red ring. However, according to Dr. John Aucott, MD, primary author of the Johns Hopkins study and president of the Lyme Disease Research Foundation of Maryland, bulls eye rashes are found in a significant minority of EM cases. EM rashes can most certainly be bulls eye-shaped, but they can also appear circular, triangular, rectangular, or amorphous. In fact, EM sometimes might not even look like a rash at all. The Hopkins study cited EM rashes that looked blueish or resembled shingles lesions. Consequently, twenty out of eighty-eight subjects with EM were initially misdiagnosed by their local physicians. In the majority of these cases, a rash was observed, but wrongly identified. Aucott says that the most common misdiagnosis was a spider bite and that 41% of misdiagnosed cases were treated with antibiotics that are ineffective for treating Lyme. (Doxycycline is the antibiotic of choice in treating early Lyme disease. For children, amoxycillin is used instead of doxycycline due the effect doxycycline can have on non-mature teeth.) Ineffective antibiotics, besides not having a significant impact on Lyme, can also have the unintended effect of reducing traces of Lyme in the blood, making future attempts at diagnosis by serology more difficult.
Example of Erythema Migrans (EM), the most common initial symptom of Lyme Disease. Image courtesy of Dr. John Aucott.
Incomplete skin exams by medical professionals are a second reason that EM rashes are missed. EM rashes can be found all over the body, sometimes in hard-to-see places on the trunk, back, and groin. If a person is not afforded a thorough skin exam, the opportunity to identify an EM rash may be missed entirely. Aucott remarks, “It’s hard to make a good diagnosis if a physician doesn’t know what the [EM] rash looks like, doesn’t undress the patient, or if the patient doesn’t have a rash.” Regarding this third point, the Hopkins study reported that of the 101 subjects found to have Lyme disease, thirteen did not have an EM rash and approximately half of these cases were misdiagnosed by their physicians.
Example of Erythema Migrans (EM), the most common initial symptom of Lyme Disease. Image courtesy of Dr. John Aucott.
Complete absence of an EM rash can make diagnosing Lyme especially difficult. Aucott says that in these cases, it is important to pay attention to a person’s symptoms. Lyme disease can present with flu-like symptoms and people with early Lyme disease will often complain of muscle aches. The important difference between actual flu symptoms and Lyme, says Aucott, is that Lyme symptoms are non-respiratory. A person with early Lyme disease might have aches, fevers, chills and be fatigued, but will not have any respiratory symptoms (sore throat, coughing, etc.) Still, many physicians are unaware of this distinction, says Aucott, who remarks that the risk of misdiagnosing Lyme disease often increases during a bad flu season.
Unclear Diagnosing Guidelines
Not only have Lyme symptoms been elusive for community physicians to identify, but the very guidelines by which Lyme is diagnosed are tenuous. The standards used for diagnosing Lyme disease are derived, in part, from a set of standards published by the CDC in 2008. However, the CDC is explicit in noting that their standards are to be used only for research surveillance purposes, not as medical diagnosis guidelines for physicians. There are currently no published set of standards for use in medical diagnosis. As a result, says Aucott, the CDC standards are “the only thing physicians have to use,” leaving them with little alternative but to rely on the CDC standards in addition to their own professional judgment when it comes to diagnosing Lyme.
Treatment of early Lyme disease involves significantly fewer variables than diagnosis, although the subject isn’t entirely without debate. In most cases, when a diagnosis is made within thirty days of being bit by an infected tick, early Lyme disease can be definitively treated with antibiotics; doxycycline being the most commonly used antibiotic. Recently, however, some discussion has ensued on the use of antibiotics used prophylactically. In these cases, a person receives a dose of antibiotic following a tick bite, but before Lyme symptoms have manifested. The dose is intended to pre-empt an EM rash or other Lyme symptoms and prevent the disease from ever taking hold. In the medical literature, there is disagreement on whether or not this is an effective practice. From a patient’s perspective, though, the benefit of potentially preventing a disabling condition like Lyme disease might seem to outweigh the harm in suffering side effects from an antibiotic like doxycycline, which are usually mild and most commonly include nausea, vomiting, and photosensitivity.
The scrutiny has to do with the fact that only a very small percentage of people who are bit by ticks actually contract Lyme disease. According to Aucott, the overall risk of developing Lyme disease from a tick attached for more than twenty-four hours is only 2%. Additionally, he notes, “only 30% of people who develop Lyme disease even recall being bit by a tick. It’s the person who never saw the tick who is most likely to get the disease.” Besides the side effects, notes Aucott, the risks of prescribing an antibiotic like doxycycline without going through the diagnostic process are that physicians are treating a wrong or absent disease and are increasing human resistance to an antibiotic that is highly effective in treating people who really do have Lyme.
The Infectious Diseases Society of America (IDSA) has also considered the subject of antibiotic prophylaxis and states in its 2006 guidelines for treating Lyme: “For the prevention of Lyme disease following a recognized tick bite, routine use of antimicrobial prophylaxis or serologic testing is not recommended.” The IDSA only recognizes prophylactic antibiotic use with a single 200mg dose of doxycycline when ALL of the following four conditions are met:
- The tick must have been attached for over thirty-six hours and be reliably identified as an Ioxides scapularis tick.
- Doxycycline must be administered within seventy-two hours following tick removal.
- The local infection rate of Borrelia burgdorferi must be equal to or greater than 20%.
- Doxycycline is not contraindicated.*
*Regarding the first condition, the IDSA notes that B. burgdorferi is normally found in I. scapularis ticks. If the infection rate of B. burgdorferi is found to be >20% in I. pacificus ticks in a region, then the first condition may also apply to I. pacificus ticks.
These four conditions are highly specific and mean that a person bitten by a tick who goes to see the doctor must have saved the tick, have a fairly certain idea of how long the tick was attached, and get to a physician’s office promptly. The physician, in turn, must have the ability to reliably identify an I. scapularis tick and must know the local infection rate of B. burgdorferi. These would seem to be difficult standards to meet in the setting of a local physician’s office with a frightened patient who, unaware of the IDSA’s publication, might have not saved the tick or doesn’t remember for how long the tick remained attached.
Tick size, maturity comparison. Image courtesy of the CDC.
Somewhere between the IDSA’s guidelines and liberal, routine use of antibiotics for all tick bites lies a middle ground, where the quantity and quality of available scientific evidence is balanced with the very legitimate worries and fears of patients. Dr. Mark Worthing, MD, a family physician based in Brunswick, Maine, seems to have found his middle ground. In his practice, Worthing considers prescribing a single dose of antibiotic if a tick has been engorged for at least twenty-four hours and a patient has been traveling in an area known to be populated with ticks carrying Lyme disease. Care is taken to properly identify the tick as one of the carriers of B. burgdorferi. Maine has a lot of dog ticks, says Worthing, which are not known to carry B. burgdorferi. Additionally, when deciding on whether to use preventive doxycycline, Worthing considers the level of anxiety and fear a patient might express.
Fear of contracting Lyme disease in the state of Maine, it would seem, is not unwarranted. In nearly twenty-two years of practice, Worthing has seen Lyme disease in Maine, particularly in its southern counties, grow rapidly. According to the CDC’s most recently published figures, Maine’s confirmed Lyme disease incidence rate between 2004 and 2008 more than tripled from 17.1 to 59.2 cases per 100,000 people. In 2008, Maine’s confirmed Lyme disease incidence rate was fifth in the nation, behind New Hampshire, Delaware, Connecticut, and Massachusetts.
Tick life cycle. Image courtesy of the CDC.
An Ounce of Prevention
Despite difference in opinion regarding treatment, what all medical professionals agree on is that the best way to prevent Lyme disease is to avoid being bitten by a tick in the first place. The documented difficulties in diagnosis and the disabling potential of Lyme put more responsibility on backpackers to increase their awareness of tick-borne diseases. Understanding tick behavior is the first step in good prevention. Contrary to what some may believe, ticks do not jump or fly. Rather, ticks attach to their hosts when the host brushes by whatever object the tick may be resting on. For backpackers, this means the risk of a tick bite increases when hiking along overgrown trails or through grassy areas where vegetation brushes up against the body. Beaches are also areas where ticks can frequently be found. If hiking through these areas, especially in May, June, and July when ticks are most active, the best way to keep ticks off the body is to wear long sleeved clothing, tuck pants into socks, and apply insect repellant. Light colored clothing will increase the likelihood of spotting a tick. For clothing, Permethrin has been found to be highly effective in killing ticks on contact and should be applied not only to clothing, but also to packs and tents. According to the website of Permethrin’s manufacturer, Sawyer Products, Permethrin does not damage clothes or equipment. Even clothing made from silks, synthetic, and waterproof membrane fabrics are unharmed.
For remaining exposed skin and for backpackers who find long-sleeved clothing uncomfortable or just can’t bear the fashion impact of tucking pants into socks, an insect repellant designed for skin application can be used. Many popular insect repellants for skin contain the chemical DEET (N, N-diethyl-m-toluamide.) If using a repellant with DEET, the repellant should contain at least 20% DEET and be applied regularly as instructed by the manufacturer. Can’t decide on which type of repellant to use? Looking for non-DEET alternatives? The Environmental Protection Agency maintains a online database of registered repellants. Each repellant’s protection times for mosquitoes and ticks, company name, active ingredients, and EPA registration number is listed. The database can be found here.
Most authorities on tick bite prevention also recommend conducting regular skin inspections when hiking through areas where ticks may be, promptly removing any ticks seen. Ticks that are attached should be removed using fine tweezers, if available, and the site of the bite should be thoroughly cleaned. Contrary to popular belief, it is not necessary to worry about leaving the mouth parts of the tick in the skin. The immediacy with which the tick is removed is more important than whether or not pieces of the tick are left behind. Lyme disease is not transmitted if a tick is attached for less than twenty-four hours. If you need to go to see a doctor, keep the tick and bring it for identification. Record the location where you were traveling, the date and time the tick was removed, and the length of time you believe it might have been attached. A rash that appears before three days following a tick bite is not EM, as EM needs at least three days to develop.
The recommendation for tick self-inspection has recently come under scientific scrutiny. A February 2009 study conducted jointly by Yale University, the Connecticut Department of Public Health, and the CDC found that routine skin inspection was not effective in preventing Lyme disease. However, the authors noted that they did not collect data regarding the type and thoroughness of skin inspections used by the study subjects, and that their findings were not intended to put a stop to public health practices.
Regardless of whether or not scientific evaluation ultimately finds self-inspection to be effective, the fact remains that the majority cases of Lyme each year occur in people who are not aware of being bitten by a tick. Backpackers traveling through overgrown, brushy, grassy, or beach areas in regions known to be populated with B. burgdorferi-infected ticks need to understand how to recognize early Lyme symptoms and know what to do should they begin to experience them. Unusual or unexplained rashes, muscle and joint aches, headaches, fatigue, and other non-respiratory flu symptoms should all be taken seriously, and backpackers experiencing some or all of these symptoms during or within thirty days following a hike should immediately go to a physician for evaluation. Ignoring these symptoms can increase the chances of suffering the serious health consequences associated with tick-borne diseases. Mark Bailey would be one of the first people to agree.
Fortunately, Bailey has made enough of a recovery to permit him to continue his passion for long distance hiking. Since his initial experience on the AT and his fight with Lyme, Bailey has covered nearly 9,000 miles of trail in the United States and Canada along the Appalachian, International Appalachian, Pacific Crest, Florida, and Benton MacKaye Trails. Reflecting back on his experience, he suspects that many backpackers today are unknowingly experiencing Lyme symptoms as he did. “I’ll bet there are a lot of hikers sitting at home who don’t feel so good,” he surmises.
Bailey recently purchased a new Gold Wing bike and is getting ready to get back on the road and tour the U.S., this time in the form of an “Iron Butt” National Parks Tour, visiting fifty national parks in at least twenty-five states in one year. His life of adventure has been restored, perhaps not to its original flavor, but to a point where Bailey seems satisfied with its direction. As Lyme disease continues to spread in the United States, it is Bailey’s hope that backpackers will increase their awareness of Lyme and infection rates will eventually begin to decline. Hopefully Bailey’s experience will not fall on deaf ears.