Living with Lyme Disease

October 01, 2015 By Alli Armstrong

A number of well-known deer hunters and other outdoorsmen from across North America have contracted Lyme disease. Among those infected, six recently shared their stories with me. Read on, and you might gain some knowledge that will save your life.

About Lyme Disease

The United States first recognized Lyme disease in 1975 near Lyme, Connecticut, after a strange outbreak of arthritis was reported in the area. Reports have increased drastically since then, and now the disease has become a public health problem in many other areas, as well.

According to the U.S. Department of Health and Human Services, Centers for Disease Control and Prevention (CDC), Lyme disease is the most frequently reported tick-related illness in the U.S. It's contracted when a person is bitten by a black-legged or a western black-legged tick infected with the bacterium Borrelia burgdorferi.

When a person is infected, it's usually by an immature tick, called a nymph. The reason for this is that a tick needs to be attached for 36 to 48 hours before it can transmit the bacterium that causes Lyme disease. The nymphs are extremely small, which makes them harder to see and feel, in turn causing them to go undetected longer.

These ticks are most often found in the woods. And thus, we hunters have a greater risk of contracting the disease. We're often in direct contact with tick habitat and are at risk of being bit — especially during the warm days of early deer season.

I tend to worry about picking up stowaway ticks from the ground or low vegetation. However, a human more frequently picks them up from dogs or cats, along with mice inside or around the home. Also, we deer hunters must watch for ticks that might detach themselves from an animal we've just taken.

The classic bullseye rash associated with Lyme disease is an obvious tipoff that you should visit a doctor immediately.

Vicki Cianciarulo, co-owner of Archer's Choice Media, contracted Lyme disease in northern Wisconsin while grouse hunting in 1988. "I had the bull's-eye rash on my shin, cold symptoms, fatigue and my teeth were giving me a bunch of issues," she remembers. "I actually went to a dentist first, because of the aching feeling I was having in my mouth.

"When I got the bull's-eye rash, it was hot to the touch. I showed it to a friend at work, and she told me to go get checked for Lyme disease," Vicki says. "She'd just seen a special on it on the news. I thought she was full of baloney. It was probably a couple weeks after the hunting trip that I was tested and found out I had Lyme. The crazy thing is that the bull's-eye rash appeared on my shin, but the tick was by my ear."

Dr. James Kroll's wife, Susie, has also been infected with Lyme's disease. And she contracted the disease much father south.

"We built our house outside Nacogdoches, Texas, in the fall of 1987," Susie says. "That summer, when school was out, I was spending a lot of time outside, working in the yard. I noticed a rash first covering most of my body but put it off to a reaction to the bleach-water spray I'd used on the dog pens.

"Several days later, I found the telltale bull's-eye mark on my thigh. I was extremely fatigued and ran a low-grade fever. Dr. Kroll was out of town during this time, or we would probably have figured it out earlier. My joints ached like they would if you had the flu. My fingers swelled to the point I could hardly hold my hairbrush.

Areas where Lyme disease is prevalent sometimes have signs of warning.

"Lyme was relatively unheard around here, so our doctor was reluctant to even test for it, although Dr. Kroll was pretty insistent. In the meantime, he had some antibiotics he started me on. This had dragged on a couple of weeks by that time, but it wasn't long before I felt better and the symptoms went away, for the most part. Being used to good health, I recall the fatigue and that low-grade fever."

Pat Reeve, co-owner of Driven TV, was out with his son Cole in Minnesota when both contracted Lyme disease. Their symptoms included joint and body aches, high fever and body chills. Both father and son realized they were infected within three days. They were extremely ill, and their body aches were so bad that they could barely get out of bed. Neither of them had a bite mark or a bull's eye, but they both had positive results on blood tests.

Matt Morrett with Zink Calls also contracted Lyme disease. "The very first symptoms I had were achiness, especially in my knees and shoulders," he points out. "But at the time, I thought I was just getting older. I really knew something wasn't right when I was on a road trip to Oklahoma for a deer hunt. I was on a 20-hour drive, and as I pulled in for the night my ankles and hands were swollen. I didn't feel right, either.

"Two days later, I was at a doctor in Oklahoma City, being diagnosed with severe high blood pressure — high enough for a stroke," he adds. "So I continued the hunt, but was very lethargic as the disease and medicine were taking a toll on my energy levels.

"When I returned home, I scheduled a Lyme test with my family physician. I take the Lyme test every year during regular checkups. The results came back negative. For the next few months, I felt like I had the flu and was achy. I had absolutely no energy, and I just pushed through as much as I could.

"Then a neighbor advised me to go to a Lyme specialist here in central Pennsylvania," Matt says. "They sent a special test to California to measure the bands in my blood. The results came back positive with an advanced case of Lyme disease."

Lyme Disease Diagnosis

Advanced Lyme disease symptoms include arthritis in joints, nervous system issues such as pain, numbness, nerve paralysis, meningitis, fatigue, headache, memory problems, irregular heart rhythm and the inability to sleep. Some people exhibit all or none of these symptoms. The disease affects everyone differently, depending upon how the body reacts to it. Some people never develop the bull's-eye rash, which makes Lyme disease even more difficult to diagnose, since that's the biggest clue.

Since Lyme disease has so many symptoms that are similar to those of other diseases, it's often misdiagnosed and the person begins treatment for something else. Influenza, infectious mononucleosis, arthritis, juvenile rheumatoid arthritis, and multiple sclerosis are a few diseases that Lyme disease patients are commonly misdiagnosed with.

Chad Davis shares how he was tested, "I went in to the walk in clinic to be tested for the flu. It came back negative. I honestly told them about me being in the woods a lot and that I had been bitten several times already in the year. They didn't run a Lyme test. They actually thought I had a prostate infection, even though not a lot pointed to that diagnosis."

Many ticks, including the black-legged tick mainly responsible for Lyme disease, "hunt" by crawling onto the edges of grass stems or leaves on the ground.

"They put me on a 14-day round of antibiotics for the supposed prostate infection," Chad says. "At 14 days, I was even worse. After the 14th day, I went to my family doctor and asked them to run a basic blood test and to run a Lyme test. By that time, I had remembered the tick that had been on me for about 48 hours from my Kentucky hunt. I actually work for BioRad Laboratories, and believe it or not, BioRad makes one of the most popular test assays for Lyme.

"The kit is very sensitive and specific to detect the IgG and IgM antibodies to Lyme," Chad explains.

"IgM antibodies are produced rapidly by our bodies to attack the presence of Lyme or other diseases. That is usually when one has the fever and chill symptoms. Those antibodies will drop in number and the body will the produce IgM antibodies. These can simply cause one to feel weak and lethargic.

"Most labs check to see if someone had contracted a particular disease a long while ago, by checking/testing for IgM antibodies. For early, more immediate detection, IgG antibody assays (tests) are used. The BioRad test actually will test for both antibody types, IgG and IgM, for early or late detection that other tests may miss.

"Luckily, this is the assay/test kit used to detect and diagnose my contraction of the disease. I was glad that I knew where my testing was going to be conducted! Two days later I got the call that I was tested positive for Lyme."

When doctors diagnose Lyme disease, they consider the following factors: exposure to ticks in places where Lyme disease is known to occur; the signs and symptoms of Lyme; and the results of blood tests used to find whether or not the patient has antibodies to the Lyme disease bacterium.

A two-stage testing process measures a patient's production of these antibodies. The first stage consists of an enzyme-linked immunosorbent assay or indirect immunofluorescence assay. The second stage includes a Western immunoblot of samples that tested positive or equivocal by previously mentioned assays.

While it's important to get to a doctor if Lyme disease is suspected, it can take four to six weeks after an infection for the body to produce measurable levels of antibodies. That's why recently infected patients can test negative even though they're actually infected.

It's possible to be infected multiple times. Bobby Hart, of Hart Rifles, has had Lyme disease three times. The first time was in Maryland, the second in Nebraska and the third in Pennsylvania. The first time he was infected, it was nearly two years before he realized what was going on. The two more recent times, he realized and was treated quicker.

If Lyme disease is at all suspected, it should be seen about by a doctor, and treatment should begin immediately. Vicki Cianciarulo recalls her testing and treatment. "The doctor didn't think it was the Lyme bull's eye on my leg but ran blood tests for Lyme anyway," she says.

"The blood test came back positive! At my first visit to my doctor, when he took the blood for the testing, he put me on a heavy antibiotic, as a 'just in case' treatment. When the results came back, the doctor wanted to see me again. He told me that he wished he would have taken pictures of my 'bull's eye,' as it didn't look like what he had seen in the journals.

"By the time I got back into the doctor's office, after just a few days on the medication, my rash was already disappearing," Vicki recalls. "I continued to get blood work done about every six months, just to keep checking to make sure that the spirochetes didn't show back up in my blood."

Ticks continue to infect great numbers of outdoorsmen with Lyme disease. But despite media coverage, the malady still often goes undiagnosed and untreated.

Lyme Disease Treatment

Various antibiotics are effective in treating Lyme disease. These are usually taken by mouth. When a patient is treated in the early stages of Lyme, they are often able to recover quickly.

"I was treated with a 10-day round of the antibiotic Doxycycline," Chad Davis says. "I felt like a new man after day 10! I was told Doxycycline is the only antibiotic

that will treat Lyme effectively. That must be true, because the other antibiotic I had taken for 14 days didn't do a thing for me — and it was a very strong one!"

Patients with later stages of Lyme disease also respond. However, some might have repeated symptoms. If that's the case, they require a second course of antibiotic treatment. The longer a victim waits to go to the doctor, the more permanent damage is done to the joints and nervous system. A vaccine for Lyme disease is not available yet.

Matt Morrett recalls what happens when he got his diagnosis. "My treatment was through a specialist who bombarded me with antibiotics three different types to combat every angle of the disease, as well as an IV treatment every two weeks. It was over a year before we were finally getting this under control.

Along with this, were a lot of natural supplements and probiotics to keep my digestive tract in line. There was a strict regimen to fight the bacteria.

"As a victim of Lyme disease, Chad Davis has some advice to share. "If you've been bitten by any tick or have been outdoors in an area known for ticks, and you begin to feel weak, tired, lethargic, out of breath and have a fever, get checked," he says. "My dad was actually one of the very first cases of Lyme in Tennessee and almost died from it. He was hospitalized for a few weeks. And he also didn't have the rash symptom.

"It was a few months after he contracted Lyme that it was diagnosed. Unfortunately, a lot of physicians don't even think of Lyme as a possibility and they test for many other things associated with the symptoms. That in turn can be very detrimental to a patient.

"One other thing my dad and I both have noticed is that we get out of breath easily now," Chad says. "He and I never had heart problems pre-Lyme. We both are now on heart medication. Lyme can and will attack the heart, joints and brain.

"Finally, please keep an eye on your kids. They too can get it, and you'd never know. I was told a young boy recently passed away from Lyme that was detected too late. If you think you or you kids might have it, with some of the associated symptoms, ask for a Lyme test — even if your physician says it's not likely."

Lyme Disease Prevention

There are several ways to reduce your chances of contracting Lyme disease. One, obviously, is to stay away from areas favored by ticks. But as hunters, that's hard to do. So let's look at some more practical solutions.

"Before going out into the woods, spray down with tick repellent all over your clothes, hat, boots, etc.," Pat Reeve advises. "I also wear tall rubber boots with pant legs tucked into them whenever possible. Have someone check you over very well when you get in from being in the outdoors. Try to avoid very grassy areas, as this is where ticks like to live."

As a Lyme disease victim, Chad Davis is now extra-cautious in heading afield any time ticks might be active. Several products now on the market discourage ticks from hopping aboard as you pass.

We're constantly in contact with trees, leaves, bushes, tall grass, trails, and even tick-infested animals. Since these pests are unavoidable, we have to use insect repellent. The best kind for preventing ticks is a repellent with a 20 percent concentration of DEET.

It can be sprayed on clothing and exposed skin. Clothes, backpacks and other gear can be treated with permethrin, but never spray it directly on the skin. Be sure to read the label of any repellent.

Vicki Cianciarulo echoes the call for caution. "We spray our clothing down with permethrin!" she says. "When we're out where the ticks are bad, we wear long pants. Tall socks help, too. If you use the spray ahead of time, the smell will dissipate and still be effective. Don't spray yourself with it, though. It's not good for the human body!"

Once indoors, check yourself thoroughly. It's also a good idea to shower within two hours of leaving the field, to wash off any unattached ticks. If clothing is washed thoroughly and then dried at high temperature, it will kill any ticks that might be lurking on it.

Susie Kroll notes, "We use sulfur powder on our pants and boots and look ourselves over when we've been out in the woods. It's also a good idea to be aware of Lyme disease cases that might have popped up in your area."

Susie goes on to offer advice from her husband, Dr. Kroll. "James suggests anyone who spends a lot of time in the outdoors find themselves a medical practitioner who's knowledgable about Lyme and other related diseases, accepts that they do exist and has protocols for dealing with them if and when they show up," she says. "He cautions that the test for Lyme's takes considerable time and is notorious for false negatives.

"So if you have a relationship with a practitioner who is familiar with Lyme, he can start treating you without having the test results," Susie continues. "In my case, we never took a test, but having someone recognize the symptoms and starting treatment immediately saved my life then, and hopefully prevented any secondary conditions that might reoccur."

Other Considerations

Another important thing to recognize is the possibility of contracting Lyme disease around deer dead deer or other game animals. You can't get it from venison, but from a tick on the deer. When the host dies, the tick detaches itself and goes in search of a new one.

There have been ticks on every game animal I've taken, including squirrels, coyotes, elk, deer and even turkeys. While we might not be around a dead animal longer than it takes to snap photos, field-dress and skin it, watch that your dogs don't linger, either. They also can get Lyme disease and suffer the symptoms.

I hope looking at the Lyme disease issue through the eyes of some hunting personalities who live with it will open your own eyes to the severity of the problem. Not only is it widespread, for the most part it's preventable. As hunters, we want to enjoy our time in the outdoors, but we also need to be aware of possible dangers in every location we hunt.