Learn more about a KTA member's personal experience with Lyme Disease, and find out more information about prevention and treatment of this complex disease.
I am a Pennsylvania hiker, and I have Lyme disease. For various personal reasons, I do not wish to reveal my name, and I hope you will understand. By writing my story, I hope to give some guidelines that will help others avoid or minimize this potentially debilitating disease, which is becoming ever more widespread among those who love and spend time in the outdoors.
As a child, I practically lived outside, making forts and houses in the tall grasses, climbing trees, and exploring the woods behind my house. As an adult, I have hiked trails everywhere, roamed the forests and fields, and gathered wild plants and flowers fearlessly.
No more.
Until 2009, I never knew what a tick looked like. But that summer, while showering one morning, I discovered an arachnid (later identified as a tick) imbedded in my armpit and engorged with blood. I pulled it out (head included), the bite went away, and I thought no more of it. Some time later, a faint red ring about the size of a golf ball appeared on my shoulder. Alarmed, I looked at all of the pictures on the internet of “bull’s-eye” rings around tick bites, but my ring was not around the bite area, and did not look like any of the ones in the photos. Nonetheless, I took a picture of it.
In March of 2010, I got another tick bite, and then another, and another. Each time, I pulled the tick off of me. The bites were received during both hiking and yard work. Instead of fading, the bites began remaining as hard, red, itchy lumps.
In June, I went to my family doctor, who ordered the ELISA test (it came back negative) and a round of Doxycycline. The bites remained. My doctor then ordered the Western Blot, but insurance and the Center for Disease Control overrode the order since the ELISA had been negative. My family doctor referred me to a dermatologist who ordered another ELISA (it came back negative) and another round of Doxycycline. I also developed an accompanying pimply and crusty rash in various locations. The dermatologist prescribed all sorts of ointments and creams that would tame the rash, but had no effect on the tick bites. The dermatologist recommended Deep Woods Off any time I went outside. This, unfortunately, was ineffective.
Between March and December, 2010, I had discovered eight tick bites, and I decided to pay for the Western Blot ($200) myself. It came back negative. Concurrently, all eight bites and the rash were active and itching in full force.
In January, 2011, the dermatologist recommended a prominent hospital dermatological team. Several of the team doctors questioned that the bites were really from ticks (since they had not encountered this reaction before), and suggested that perhaps I had bedbugs instead. Even though I knew better, I went home and tore the bed, bureau, and suitcases apart – no bedbugs. The doctors recommended stronger creams, which had no effect on the bites. They ordered another ELISA test (it came back negative) and another round of Doxycycline, with no change in my symptoms.
Their final solution was to inject the bites with cortisone. The cortisone worked for a few weeks, but then the bites would come roaring back, and, with them, the crusty rash. Through 2011, I had the bites injected numerous times with cortisone, and in the meantime, received four additional tick bites. The fourteen total locations were all over my body, ranging from my neck to the back of my knee.
On one occasion, I took the tick to the team office to show them that I really did know what a tick looked like. Their consensus was that I did not have Lyme because I had none of the typical symptoms: my “bulls eye” ring was not at the bite location, I did not have any of the other common Lyme symptoms, bites that won’t go away is not listed as a symptom, the ELISA and Western Blot were negative, and the Doxycycline (typically given to treat Lyme) seemed to have no effect.
I became concerned about the possible effects of so much cortisone and decided to see a Lyme specialist. The Lyme specialist ordered multiple blood and other tests (including another Western Blot, which came back negative). He also, however, ordered an MRI of the brain. The MRI is where the Lyme showed up.
Lyme is a sneaky, insidious disease that morphs and hides in cysts and other places in the human body. It can lie dormant for years before manifesting itself in ways that are symptomatic of other diseases. It is often misdiagnosed for something else, and therefore goes untreated. I am now under treatment. The Lyme doctor told me that as long as I was receiving cortisone injections, I would not get rid of the Lyme.
If you have been bitten -- or suspect that you have bitten -- by ticks (the nymphs are as small as no-see-ums), I strongly recommend that you get tested for Lyme. The longer it goes untreated, the more difficult it is to treat. It can affect your muscular and neurological systems. It can change your life. But it doesn’t have to. If you are like me, one might just as well tell a bird not to fly in the air, or a fish not to swim in the water, as tell me to stop hiking on the trail.