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One man’s tick-bourne Lyme Disease fears date back more than 40 years, long before he contracted his own case in 2012. Here are his views on risks, prevalence and the inevitably mixed information that comes from the medical community.
i trace my irrational fear of ticks to the summer of 1975 when I was a proctor in charge of a cabin at Camp Easter Seal in Craig County. When I was checking in a 10-year-old camper, his mother explained that his intelligence had been normal until the year before when he had been bitten by a tick carrying Rocky Mountain Spotted Fever. Sobbing, the mom told me that her hesitation in taking her son, who had developed a high fever, to the doctor had resulted in him becoming permanently mentally disabled.
Ever since, whenever I have witnessed a tick on me or anyone else, I have “freaked out” as my students at Lord Botetourt High School (where I’m an English teacher) would say. This is rather an unseemly reaction for someone whose other career is as an outdoor writer/photographer. While on various assignments, I have survived close encounters with black bears, wild boar, timber rattlers, copperheads, buffalo, bobcats and various rabid animals, as well as being hurled from capsized boats while coursing through Class IV rapids—and had a grand time all the while.
Unfortunately, as events of recent years have proved, my irrational fear of ticks has proven to be, well, all too rational. On April 10, 2012, I was on assignment, covering an Augusta County cattle grower whose methods of raising bovines are very environmentally friendly. Even though the wind chill that day had been in the upper 30s and my long pants had been tucked inside knee-high boots, when my wife Elaine and I returned to the car, we found a half dozen or so blacklegged ticks (a carrier of Lyme Disease, the nymphs are about the size of tomato seeds, the adults the size of apple seeds) on me. Some had embedded themselves.
By late May, I was experiencing fatigue which I blamed on the stress of finishing the school year. By late June, my left toes were constantly having tingling sensations (known as neuropathy) and by early July the right ones became similarly affected. It was then that I feared that I had contracted Lyme Disease (LD) and contacted my personal physician.
A dozen or more years ago that same doctor (who asked that his name not be mentioned in any story involving LD), had warned me that my outdoor lifestyle made me a prime candidate to develop Lyme. As a precaution, he had also given me an experimental vaccine against LD, which according to the Center for Disease Control (CDC) is no longer available because of low demand and which would no longer protect humans even if they had taken it. Oddly enough, however, vaccines exist for dogs but not for cats.
Before I even went to the doctor, I felt sure that I had LD, for I knew the symptoms. Besides fatigue and neuropathy, other early indicators include fever, chills, headaches, body aches, swollen lymph nodes, and perhaps the most common one—an expanding bulls-eye rash. Months later, other signs could include enlarged lymph glands, joint pain (particularly in the knees), meningitis, and Bell’s palsy, which is a loss of muscle tone on one or both sides of the face.
Many months later, even after folks feel that they have overcome the disease, these symptoms can appear: arthritis, severe fatigue, eye inflammation, liver inflammation, and heart problems such as an irregular beat. The American Lyme Disease Foundation (ALDF) says the following symptoms could also materialize: “Disabling neurological disorders (disorientation; confusion; dizziness; short-term memory loss; inability to concentrate, finish sentences or follow conversations; mental ‘fog’.”
So on July 13, 2012 I went to my doctor, told him I feared that I had LD and asked him to conduct tests. A week later, the blood work came back and confirmed those fears. Thus began the worst period of my battle with Lyme. My doctor prescribed doxycycline, which is also used to treat the most deadly disease ever known to humankind—the Black Death or Bubonic Plague. And almost immediately after beginning the doses, I began to experience nausea, often severe especially when in a vehicle, as well as fatigue.
But far worse were the alternating attacks of diarrhea and constipation. During one particularly bad dark night of the soul, I arose out of bed around 11:00 P.M. in agony because of constipation. I scarfed down about 20 prunes and began walking the rural Botetourt road that we live on in hopes of relief which finally did occur after midnight.
That temporary respite was followed by three days of diarrhea, which was followed by the constipation returning. My doctor also had forbidden me to go outside because of the fact that patients taking doxycycline can become sunburned more easily, which meant no more fishing, birding or gardening that summer.
I took the doxycycline for 30 days but continued to endure intermittent fatigue—and the occasional mouth ulcer—for three more months. In March, I underwent another round of blood work and antibiotics, and my physician also gave me the names of a neurologist and an immunologist so that they too could help treat me.
It was then that I first encountered one of the most frustrating aspects of LD that some doctors—in this case the immunologist—decline to see people with Lyme. The neurologist did agree to treat me and explained why some doctors won’t, stating that many physicians frequently—and understandably—misdiagnose LD because its symptoms are like so many other afflictions.
I greatly admired the neurologist’s admission, which was followed by his confession that although he was reasonably sure that I had LD, I also might have Multiple Sclerosis, diabetes, or one of “about 50 other diseases.” I then asked for worst and best case scenarios.
“Worst case is MS, best case is you’ve worn down your footpads from too much exercise over the years, but what I feel that you’ve really got is Lyme,” he said. “But, again, it is hard to make definite statements about Lyme.”
Deciding to make it a personal quest to warn others about the dangers of LD, I contacted the editor of Wildlife in North Carolina, who immediately assigned me a story on the topic. When the article appeared in the July/August 2013 issue, I was overwhelmed with the responses from readers.
One lady wrote about numerous doctors misdiagnosing her LD, with one physician even telling her that all that was wrong was a localized skin irritation and that Lyme is rare in this area—which is not true. Because of the misdiagnosis and resultant time lapse, the infection penetrated her central nervous system. Another individual told me that she had become bed-ridden and suffered intense joint pain much of the day.
I then wrote another Lyme related story, this one for an online deer-hunting magazine. Once again, I heard tales of woe. One man told me he was misdiagnosed for 10 years and became debilitated before a doctor finally correctly found that the gentleman had LD. Another individual suffering from tick bites and misdiagnosis begged me to “continue to tell your story.”
So how bad is Lyme Disease in the Roanoke area? To find out, I contacted David N. Gaines, Ph.D., State Public Health Entomologist for the Virginia Department of Health, Division of Environmental Epidemiology.
“The greater Roanoke area has seen a progressively greater incidence of Lyme over the past 10 years, but this increase was not nearly as much as was seen in nearby higher elevation locations like the New River Valley,” says Gaines.
“One thing that is certain is that the incidence of Lyme Disease has been increasing in a south-westward direction, and places like the New River Valley, which hardly had any Lyme Disease 10 years ago, have now become highly Lyme endemic. I would attribute this increase to a progressive south-westward advance, expansion and establishment of ‘northern variant’ blacklegged tick (Ixodes scapularis) populations through the upper piedmont and mountainous regions of Virginia.”
Gaines also explained why diagnosing this plague is so frustrating for both doctors and patients.
“The diagnosis of Lyme Disease is not easy because many of its symptoms are characteristic of, or can be caused by other diseases, and there are relatively few Lyme Disease symptoms that are specific to Lyme,” he says. “One of the most Lyme-specific symptoms is the EM rash, [the infamous bulls-eye rash] but in fact even the EM rash may be caused by things other than Lyme.”
For example, continues Gaines, an as-of-yet explained syndrome called Southern Tick Associated Rash Illness (STARI) is related to bites of lone star ticks. And lone star ticks, and their bites are, by far, much more common in Virginia than are blacklegged ticks or their bites. Furthermore, two of the most frequently used diagnostic tests for Lyme Disease can yield a relatively high proportion of false positive test results. Therefore, there may be many patients who are diagnosed with LD because they had a tick bite, fever, body aches, joint pain or fatigue, and even tested positive for Lyme, but these individuals do not have actual cases of Lyme.
One important bit of good news is that Gaines says that among all of the Lyme patients the state has documented in Virginia each year, very few folks suffer from long term after-effects. Annually, although thousands of people are diagnosed and treated for this affliction in the Old Dominion, the VDH officially counted only 1,539 cases in 2015. And the department was only able to investigate a small proportion of the patients that tested positive.
“We and the physicians who practice ‘evidence based’ medicine refer to those suffering from long-term Lyme symptoms as having ‘post treatment Lyme disease syndrome,’ or PTLDS,” he says.
“I am pretty sure I would be deluged with calls about PTLDS if a large proportion of the thousands of patients we have counted over the years had it. Published medical research has shown that a relatively small proportion of Lyme patients suffer from PTLDS and most persons tend to get over their symptoms within about two years of their illness.”
One thing that I want to make clear is that I have the greatest empathy for both the people struggling with LD and the doctors struggling to understand this modern-day plague. The rules and conventions about what Lyme is, where it exists, and how to treat it seem to be constantly changing. To compare this situation with my English classes and the rules of grammar, it would be as if one week sentences end with periods, the next week only with brackets and parentheses.
The American Lyme Disease Foundation warns of “any contact with vegetation” in tick-infested areas. But any kind of vegetation in the Roanoke area—from the Appalachian Trail to our backyards—offers the potential to harbor blacklegged ticks. Indeed, the most recent time I found one of these blood suckers on me was when I walked through our backyard to feed the chickens. I saw a black speck of what looked like dirt on my leg.
Even before I contracted LD, Elaine and I were extremely diligent during our outdoor pursuits, typically wearing knee-high boots with pants tucked inside, long-sleeve shirts, and spraying ourselves with various tick repellants. And after outdoor excursions we also always remove our clothes and minutely check each other for ticks, then shower. All those precautions—and my paranoia about ticks—didn’t keep me from contracting LD.
And now, after a little more than four years since the blacklegged ticks bit me, I still have toe tingling in both feet, though the sensations have subsided somewhat. Both my family doctor and neurologist, whom I have nothing but praise for, have told me that my neuropathy might never disappear as damage to nerve endings sometimes can be permanent.
If the damage is permanent, I can live with it and still enjoy the Roanoke area’s wonderful outdoors. Many Lyme sufferers have been nowhere near as fortunate. Please be careful out there.