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ONE MAN'S BATTLE WITH LYME DISEASE
Text and Photos by Charles J. Alsheimer

I still remember the phone call I received two years ago on a crisp October day. On the other end of the line was a local newspaper reporter who wanted my opinion on the prospects of hunters contracting Lyme disease during the 1993 deer season. I can't remember my exact response, but it went something like this:

"I realize Lyme disease is a problem in many parts of the country, but not here in western New York. My guess is that a hunter has a better chance of being hit by a meteor than contracting Lyme disease around here. So, I'd tell your readers not to worry about it. The whole issue is overblown."

Famous last words. My comments returned to haunt me. I ended up being the guy who got hit by a meteor. Less than eight months after that phone call, I found myself in declining health and didn't know why. As you can imagine, I became deeply concerned. America's woods and waters are my workplace, and all my life I've been involved in athletics as a player and coach. I consider myself to be in good shape, especially for someone who is 47 years old. As a result, I was mystified when my health started to deteriorate last summer.

Overlooked Dangers
In my line of work, I had always viewed biting, buzzing or crawling insects and arachnids as nothing more than a nuisance. Oh, I always used the necessary insect repellants and protective clothing, but biting bugs never caused me to shy away from a woods, swamp or stream when pursuing my work and recreation. As a serious white-tailed deer hunter and photographer, I should have known better.

At this writing, Lyme disease is pretty much diagnosed clinically. As a result, it often becomes a diagnosis of exclusion. In other words, unless a person has the classic Lyme disease rash and tests positive for the disease in a blood sample, the physician will usually attempt to eliminate other ailments before suspecting Lyme disease as the culprit. For that reason, Lyme disease is often called "The Great Imitator." It produces a wide range of symptoms that mimic nearly 200 other illnesses.

Lyme disease is caused by the bacteria Borrelia burgdorferi, and is not difficult to treat if it's diagnosed quickly. Unfortunately, diagnosis remains a big problem and, left untreated, the bacteria multiply and spread quickly, increasing the risk of serious complications. A quote from the book Coping with Lyme Disease, illustrates this point: "The diagnostic problems surrounding Lyme disease are derived primarily from the fact that there have been no tests that could simply and positively detect the Borrelia burgdorferi spirochete, thus confirming Lyme and initiating the traditional therapeutic process."

Vague Beginnings
My bout with Lyme disease had a vague beginning. I had always thought, because of sketchy media reports, that I could only get Lyme disease from certain ticks, specifically the Ixodes, or deer tick. Further, I believed that if I were bitten, I would develop a telltale bull's-eye circle or rash around the bite. Neither was the case with me, and, as you'll see, there might be many other ways to contract the disease.

My encounter with Lyme disease probably began in May 1994. During May and June I was doing a tremendous amount of deer photography on and near our farm. My goal was to capture doe and fawn behavior on film. The photography went well in spite of high populations of mosquitoes, black flies and "punkies." For the most part, I kept these nuisances in check. Still, in spite of wearing lightweight hip boots, protective garments, and insect repellants, I took a few hits. One morning, while photographing a whitetail at a stream crossing, I watched as a black fly chewed and bit my right wrist. I felt a great deal of self-gratification when I squashed it before it could fly away. By the next morning, the bite had swollen a little and turned red, but it didn't concern me.

Within a week, I came down with a sore left elbow (I'm a lefty) while pitching batting practice to my son's high school baseball team. I've been a baseball coach in various leagues for nearly 25 years, and have pitched batting practice at nearly every practice during those years. I seldom got a sore arm, even when I pitched competitively, so I shrugged it off as old age catching up with me.

A week later, with my left arm still sore, my right wrist and the toes on my right foot started becoming sore. Also, I began encountering a wide range of ringing in my ears. That caused a little discomfort, but I still didn't give it much thought. My concern increased a week later when my right hip began hurting. I didn't know it then, but worse symptoms were to come.

Fatigue Reigns
By the first week of June, I found myself getting tired in the middle of the day, so I began taking a ten-minute "power nap" every noon. I awoke from these siestas feeling refreshed and ready to go. Often I would kid with people about these naps, and mention how great they made me feel. As with the sore arm, I just figured Father Time's clock was slowing me down.

Then, one night in mid-June, I pulled up to a traffic light and noticed I had difficulty reading the neon sign on a bank next to the intersection. I don't wear glasses, and figured it was merely eye fatigue. After all, during my annual eye exam the previous February, the doctor told me I would have to start using non-prescription reading glasses because of my age. I figured that might be part of the problem.

Unfortunately, within a week of the neon-sign episode, I was having trouble focusing my eyes during the day. This condition was especially disturbing because it was affecting my photography. I wondered what on earth was going on. More than once I worried about my future in photography if I couldn't see well enough to use my cameras. Of course, those thoughts were premature, but I had serious concerns.

Slowly, I began to feel like an old man. From mid-June to mid-July, more unfamiliar symptoms began plaguing me. At the end of June, while bush-hogging some of our hayfields, my heart began to race and palpitate for no apparent reason. I quickly turned off the tractor's power take-off unit, cut back the engine's throttle, and stopped the tractor.

I put my hand on my chest, wondering if my heart was going to jump through my shirt. I was scared, but within a couple of minutes the palpitations stopped. Little did I realize that was only the beginning of more episodes.

Bow Practice Becomes Painful
On July Fourth, I dusted off the bow and began shooting in preparation for the fall. I was scheduled to go on a bow-hunt for whitetails with the Realtree Camouflage folks in October, and I wanted to be ready. My practice sessions didn't go well. After about three shots each day, my left "pitcher's elbow" began aching. That coupled with the sore joints, fatigue, blurred vision, ringing ears, and a second bout with irregular heartbeats greatly increased my concerns.

By mid-July, I was battling yet another problem. Without warning, pain began shooting through my thigh and arm muscles. Though these pains lasted only a couple of seconds, I felt as if I was being stabbed with an ice pick. Despite all the discomfort, I was able to function, though I was becoming greatly concerned.

Around the end of July, another new twist developed. I felt quite good for a few days. I still had the joint soreness, but my stamina and steady eyesight were returning. I began to think I might be getting over whatever had plagued me.

Unfortunately, the recovery lasted only a few days. I later found out that this short "recovery" was a trait of Lyme disease. Slowly, all of the problems returned except the heart palpitations. In addition, another new problem surfaced: brief bouts ofnausea. The episodes never lasted more than five to ten seconds, but they hit once or twice a day.

Fate Intervenes
As August arrived, I got lucky. One afternoon, I was on the phone with Dave Buckley, a fellow outdoor writer from West Valley, New York. With our conversation nearly complete, I asked about his wife, Beth. Dave responded, "Oh, much better."

"Better? What's wrong?" I asked.

Dave told me Beth had contracted Lyme disease and was in the final stages of treatment. When he told me about it, I asked to speak with her. After asking many questions about her symptoms and how she was being treated, I said goodbye and hung up. For the next hour, my mind was racing at warp speed. Many of Beth's symptoms resembled mine. She never got a rash from being bit, and neither had I. All I had was a slight scar, still visible, from the black fly's bite. Nor had Beth tested positive for Lyme disease on her first test.

After doing a little more self-diagnosis, I called Dave and Beth again. I told them of my symptoms and the lack of any Lyme disease rash. Beth was involved in a Lyme disease support group and urged me to see a specialist. She gave me the address and phone number of Dr. Joseph Joseph, a Lyme disease specialist in Hermitage, Pennsylvania, which is 250 miles from my home.

After I hung up, I began doubting my self-diagnosis and basically convinced myself that I couldn't possibly have Lyme disease. In all honesty, contemplating the long drives between our farm and Dr. Joseph's office had a lot to do with my attitude. The next day, however, with all the symptoms still with me, I called a friend who is a general practitioner. He said he was not an expert on Lyme disease or its treatment, and that if I knew a specialist, I should go to him. He also said he could give me the blood test for Lyme disease if I wanted.

Seeking Treatment
With reservation, I called Dr. Joseph and made an appointment. On August 16, 1994, I made the 250-mile drive to his office. The crazy thing was, I had felt fine the previous 36 hours, and nearly all the soreness had gone away.

Meeting Dr. Joseph was a breath of fresh air. He was personable and, like me, an outdoorsman. He put me through a battery of tests before we sat down to talk. During our conversation, he grilled me about my symptoms, my line of work, and how much time I spent in the outdoors. About fifteen minutes into our conversation he said, "I don't know what your blood test will reveal, but I've seen enough cases to tell you that you probably have Lyme disease. I'm not going to wait for the test results to start you on medication."

I drove home with a sense of relief. Within a day, I began my oral medication, and felt a major improvement within a week. The soreness started going away and I could see better. But I had a major setback two weeks into the treatment. One morning, while photographing wildflowers, my left knee began to hurt. Soon after, I bent over to photograph a low-growing flower and was unable to get up. I rolled over in the dew-laden grass and tried to straighten out my leg. The pain was incredible, but I eventually made it home. For the next two days the knee was tender. I later learned that this pain was nothing more than a "Herxheimer reaction." Herxheimer occurs when the Lyme disease spirochete, while being attacked by the antibiotics, gives off toxins and causes the immune system to react. Not being versed in this aspect of the treatment, I thought the Lyme disease had returned.

Inaccurate Blood Test
I returned to Dr. Joseph on September 17 and, as we talked, he said my first blood test had been negative. Still, he was so certain I had Lyme disease that he conducted more blood tests. The second test was different, and proved to me what many medical experts were learning about Lyme disease: Just because the first test is negative doesn't mean the second test will also be negative. Fortunately, Dr. Joseph had begun my treatment a month before the disease was confirmed.

By November, I began feeling like my old self. I felt I had received a new lease on life. I finished my medication on Christmas Eve and haven't looked back. Not a week goes by that I don't think of the saying, "If you have your health you have everything." No truer words were ever spoken.

I've also thought a lot about the mystery of Lyme disease and the difficulty of getting the right treatment. I was fortunate to find a competent doctor who specialized in Lyme disease. I was also thankful a socialistic system of national health care was not in place when I got the disease. If I had been forced to stay within my own HMO for treatment, I wouldn't have been able to see Dr. Joseph. Who knows, maybe a local doctor would still be trying to treat me for arthritis or one of the many other symptoms I had. I say that because I've since talked to a couple of local doctors who have doubts Lyme disease exists in western New York. That's sad, because Dr. Joseph is treating other patients from my area.

Conclusion
You'll see from the accompanying interview I did with Dr. Joseph that Lyme disease can probably be contracted from several types of insects and arachnids. Though he didn't mention it, I have also read where in theory Lyme disease could be passed on through blood, milk and other body fluids, or in meat that hasn't been thoroughly cooked.

To recap, I urge you to be more alert to the symptoms of Lyme disease than I was. I've learned there are about 70 symptoms of Lyme disease that are similar to other illnesses. I had nearly 20 of the symptoms, and through self-diagnosis, I became fairly certain I had the disease when local doctors weren't so sure. Of course, I didn't have the classic symptoms. I believe I contracted the disease from a black fly's bite, not a deer tick's; I never had the bull's-eye rash; and I tested negative for Lyme disease the first time.

I've deeply pondered my disease, its treatment, and the role that luck and fate played in my diagnosis and recovery. I'm just thankful that I found the right doctor at the right time.

INTERVIEW WITH DR. JOSEPH JOSEPH
Dr. Joseph Joseph practices internal medicine in Hermitage, Pennsylvania, and became interested in Lyme disease in the mid-1980s. Today, he's recognized as a leader in treating Lyme disease, and he sees about 200 Lyme disease patients from throughout the United States each month. What follows is an interview I conducted with him while preparing this article.

Alsheimer: How widespread is Lyme disease?

Dr. Joseph: Lyme is a lot bigger than it is credited for at this time. I think the reason is that physicians are not educated on Lyme disease and often think it's a fad illness. Also, Lyme disease is difficult to diagnose because not everything is clear-cut. A good number of physicians find it difficult to practice the art of medicine if everything is not black and white. That is how we end up with the problems of Lyme disease.

Alsheimer: Is there more than one strain of Lyme disease?

Dr. Joseph: There are numerous strains of Lyme disease. The Center for Disease Control thinks there are probably 70 different strains. I believe that's why Lyme disease is so difficult to treat, and why it's so hard to diagnose with just one simple test.

Alsheimer: How can people contract Lyme disease?

Dr. Joseph: A tick bite is the classic way to get Lyme disease. However, I believe other insects also carry it. I believe any blood-sucking insect could infect a person. Actually, any secretion from an infected animal or person could transmit Lyme disease. I've had patients get Lyme disease after cutting themselves while cutting up deer. So there are other vectors.

Alsheimer: why do some people test negative for Lyme, even though they have the disease?

Dr. Joseph: The problem is that, with our conventional tests, we're looking for an antibody. Antibodies are formed by a person's body in an immune process as its defense against the infection. Most people with Lyme disease don't test positive for at least six to eight weeks. If the patients are tested before that time, they might not have enough antibodies built up to test positive. Also, in many patients, Lyme has been able to fool the test and hide from the conventional blood test. But there are newer tests. PCR (Polymerase Chain Reaction) and new capture assays better diagnose Lyme. Unfortunately, physicians seldom use these tests.

Alsheimer: How can Lyme disease be prevented?

Dr. Joseph: Prevention is simple. Watch yourself for ticks when you're in areas that hold ticks. Have someone check you for ticks after an exposure in the field. Also, repellants are excellent for keeping ticks and insects away from you. Permanone is one of the best, and it has been used by the military for several years.

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