Bitten: Stories of Diseases From Ticks

As a mom of four very young children, I was used to being tired, but this was something different. I woke up exhausted, achy and feverish. I also noticed swollen lymph nodes under my left arm. I assumed I had the flu, but while showering later that morning, I noticed a rash on my left side — the same side I'd removed a tick from a few days before. I'd read enough about tick-borne diseases to know I needed to get to a doctor right away. Sure enough, my doctor said I was likely infected with Rocky Mountain spotted fever. He prescribed a round of doxycycline antibiotics, which quickly cleared my symptoms up. I was fortunate to have caught it early, but not everyone does. Tick-borne diseases can be hard to diagnose and, left untreated, can cause long-term debilitating symptoms and even death.

A Near Death Experience

Jason Anthony, a hunting guide living in Iowa, has had three separate bouts of Lyme disease, but it was Rocky Mountain spotted fever that almost killed him.

I was bear hunting in Montana and there were wood ticks everywhere, Anthony said. Several days after his hunt, he stopped at a Burger King to get some food. After he ate, he began feeling very sick.

I made it to my friend Sam's house, and by then I had a 104-degree fever. I was also having convulsions. I told him I thought I got food poisoning. I took some ibuprofen, which knocked the fever down, but the next day the fever came back.

"My doctor said had I waited much longer, I would have likely ended up brain dead.

Anthony says he tried to sleep but was having more convulsions. His friend knew he was very sick and tried to take him to the emergency room, but Anthony refused because he was worried his health insurance wouldn't cover the visit since he wasn't in his home state.

The next day, I flew to Wisconsin, where I lived at the time, and went straight to the emergency room. I told them about the wood ticks. They tested me and discovered I had Rocky Mountain spotted fever. They gave me IVs for dehydration and a high dose of antibiotics to fight the disease. My doctor said had I waited much longer, I would have likely ended up brain dead.

Fortunately, the antibiotics worked and Anthony recovered fully from the ordeal. Unfortunately, stories like Anthony's are becoming more common.

According to the Centers for Disease Control, tick-borne diseases are on the rise, with more than 50,000 cases reported in 2019 (the latest data recorded). In fact, tick-borne illnesses doubled in the United States between 2014 and 2016. Lyme disease, Rocky Mountain spotted fever, human monocytotropic ehrlichiosis, human granulocytic anaplasmosis, babesiosis, and alpha-gal syndrome are just a few of the most common diseases spread by ticks.

One Tick = Multiple Infections

As if contracting one tick-borne disease isn't bad enough, ticks can carry multiple pathogens, which means one tick can infect a person with several diseases at once. In fact, there are 16 known tick-borne diseases in the United States.

That's what happened to Tron Peterson, director of Peterson Outdoors Ministries, which provides outdoor therapy for veterans, youth, and adults with disabilities or serious illnesses.

A singular tick infected me with Lyme disease, Coxiella burnetii, and mononucleosis, Peterson said.

Peterson was bitten by a tick in March 2007 while filming an outdoor TV show, and within three days he was unable to move his arms and legs. He also discovered a large bull's-eye rash on his back, which is indicative of a Lyme disease infection.

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My identical twin brother, Troy, had been suffering from Lyme disease for years, so I was familiar with the symptoms and knew I needed to get help.

Peterson made an appointment with a disease specialist who prescribed a high dose of doxycycline, tetracycline, and prednisone. He was told to take the antibiotics twice a day for four and a half months.

In four and a half months I returned to the specialist who did some tests. It looked like everything was pretty much gone, so I stopped taking the antibiotics, Peterson said. Within a month, my throat began swelling shut and I was experiencing a lot of pain in the muscles around my throat and neck. I went to the hospital, where they ran tests and discovered I was still infected with the bacterium Borrelia burgdorferi, which causes Lyme disease, and it was attacking the muscles in my throat. They put me back on the antibiotics. I tried getting off of them again, and the same thing happened with another trip to the hospital. I ended up staying on the antibiotics from 2007 to 2020.

Peterson says he decided he needed to improve his overall health in order to fight the effects of Lyme disease.

In 2020 I started working with a nutritionist in California. I changed my diet and started taking vitamins. I got much healthier overall and was able to stop taking the antibiotics. I've been in remission since then.

Difficult to Diagnose

Tick-borne diseases can be tough to diagnose, and many people infected suffer for years before they receive a conclusive diagnosis and begin treatment.

Peterson's twin brother, Troy, is still suffering the effects of five diseases he caught from a tick in 1993.

He has undergone constant treatment since then, and he even still gets the bull's-eye rashes, Peterson said. He went undiagnosed for 10 years. Doctors did some remedial testing, but the tick-borne diseases never showed up. Finally, a physician did a Western blot test and five tick-borne diseases, including Lyme disease, were discovered.

Vaden Lackey of Nashville, Tennessee, almost died from the lesser-known tick-borne disease ehrlichiosis before receiving the correct diagnosis and treatment.

That summer 21 people in my area contracted ehrlichiosis, and I believe three died from it."

Lackey, a landscape architect, had spent the day touring the grounds of The Governors Club in Brentwood, Tennessee. A few days later, he started running a fever and feeling badly. Not knowing he'd been bitten by an infected tick, Lackey visited his doctor, who prescribed him antibiotics and sent him home.

I was supposed to return to the doctor a few days later for a follow-up. In the meantime, despite the antibiotics, my fever spiked and I became delirious. I felt awful. I returned to the doctor, who said, 'We have to get you to the hospital immediately.' I went to Vanderbilt hospital where I ended up spending four days. My fever spiked to 104 degrees and I began hallucinating. At the hospital, they ran a blood test and discovered I had ehrlichiosis.

Ehrlichiosis is caused by bacteria often spread by lone star ticks. It can cause fever, muscle aches, and other symptoms; if not treated with the correct antibiotics, it can cause severe illness and even lead to death.

Fortunately, Lackey recovered well after receiving the proper antibiotics, but he said he did suffer from some memory problems afterward that he believes were likely caused by the bacteria.

That summer 21 people in my area contracted ehrlichiosis, and I believe three died from it. One guy was just 21 years old, Lackey said.

That's the problem with tick-borne diseases. They often get misdiagnosed because they mimic more common diseases, such as the flu, with symptoms like fever and/or chills, muscle aches, headache, and fatigue. So how can you tell if you have the flu or a tick-borne disease?

The CDC says to look for additional symptoms, especially a rash near the bite or somewhere else on the body. A bull's-eye-shaped rash is a recognizable sign of Lyme disease, but fewer than half of those diagnosed with Lyme disease recall seeing a rash.

No More Red Meat

One of the most unusual tick-borne illnesses is also one of the most difficult to diagnose. Alpha-gal syndrome is a type of food allergy to red meat and other products made from mammals, and in the U.S., the condition most often begins with a bite from a lone star tick.

According to the Mayo Clinic, the tick bite transmits a sugar molecule called alpha-gal into the person's body, which can sometimes trigger an immune system reaction that eventually produces mild to severe allergic reactions to red meat, such as beef, pork, or lamb, or other mammalian products.

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Summer Carroll, an outdoor enthusiast from Alabama, suffered from alpha-gal syndrome, as well as several other tick-borne illnesses, for years before she received a correct diagnosis.

Because alpha-gal syndrome can present itself differently in each person, diagnosing can be difficult, Carroll said. Symptoms can range from joint pain and migraines all the way to complete anaphylaxis any time a patient comes in contact with mammalian meats or byproducts. When I'm exposed to mammalian products, I experience anaphylactic symptoms, like someone with a peanut or shellfish allergy.

Carroll doesn't recall being bitten by the tick that caused her illnesses.

The only time I remember actually removing a tick from my body was as a small child, she said. I never experienced symptoms of alpha-gal syndrome until I was in my mid 20s. But it's very possible I was bitten later in life when I developed symptoms because ticks can be as small as a piece of sand.

After suffering for years, Carroll said, she found an allergist who ran an alpha-gal panel test on her that came back positive.

Carroll said she's frustrated with the medical community's lack of knowledge about the syndrome. She said there should also be warning labels on food products just like there is for peanut and shellfish allergies.

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There are mammalian products in packaged food that can cause a reaction to alpha-gal patients simply listed as 'natural flavorings' and other names you would not expect to be animal-based.

She said the same goes for medications. For example, the most common type of gelatin used in the medical field is made from mammalian sources. In fact, the allergist who discovered her alpha-gal syndrome prescribed her medications that contained mammalian byproducts in the ingredients, which caused her to experience another allergic reaction.

Carroll now works to educate others on the dangers of tick-borne diseases.

I put together an information website called TickedOffMastCells.Org to provide information and resources on tick-borne illnesses, as well as mast cell activation syndrome, which I developed after contracting Rocky Mountain spotted fever, Lyme disease, and alpha-gal syndrome due to my tick-borne illnesses going undiagnosed and untreated.

She's also in the final stages of publishing a book on the topic.

Prevention Is Key

Of course, the best way to prevent tick-borne illnesses is prevent tick bites. The Johns Hopkins Lyme Disease Research Center suggests wearing protective clothing with long sleeves and long pants that are tucked into socks and shoes. Use insect repellent, such as DEET, on the body and permethrin on clothing (review safety info before using on children). When you come inside, shower and wash your clothes. And check your body and head for ticks.

So, what do you do if you discover a tick on you? If a tick is only on you for two or three hours, it probably won't have a chance to attach and start feeding.

According to Yale Medicine, once a tick does start feeding, it will stay on for approximately 12 to 18 hours and then will fall off once it's full. The tick must be attached more than 10 hours to transmit bacteria. The quicker you can find and remove a tick, the less likely you'll catch a disease from it. Common sites of attachment include behind knees, the underarms, scalp, navel, groin, buttocks, and back.

To remove an attached tick, grasp the tick between its head and your skin and pull firmly and gently away. If small black mouthparts are left behind, don't worry as they do not transmit disease and will work their way out on their own. Wash the area well with soap and water.

If the tick has infected you with a disease, symptoms will usually start appearing just a few days after the tick bite. Always let your doctor know if you experience any type of illness after being bitten by a tick or after spending time in a tick-infested area. The earlier you seek treatment, the better your prognosis.