When the new year started, she went to training camp and her symptoms began to worsen. “I started getting more and more sore. A lot more sore than usual. I chalked it up to getting older I guess … and I still didn’t think much of it,” says Naeth, who’s now 37 and lives in Boulder, Colorado. But when the pain got progressively worse for Naeth, it began to interfere with her training and she couldn’t ignore it any longer. She began to experience depression and anxiety along with her physical symptoms. “My legs would start to burn,” she says. “Every time I would go out to run or ride, I had no muscle power or strength. My muscles would spasm and I would feel like a cripple,” she says. “I actually thought I was coming down with multiple sclerosis or something of that nature because it just took my body away,” says Naeth. She soon realized that what she felt wasn’t the sort of normal soreness or hurt she was used to.
Searching for Answers and Getting a Diagnosis
Although Naeth had enlarged lymph nodes and symptoms, her doctor declared her healthy after her yearly sports physical. “He thought I was fighting something off, and neither of us thought anything of it,” she says. After her symptoms didn’t improve, Naeth decided to order blood tests online. She was tested for Lyme disease, and that test came back negative. Her results showed she was in good health, except for a marker that indicated the presence of a high level of inflammation in her body. She shared her results with a world-class doctor in Boston. “She told me that I had a virus and to take time off,” says Naeth. It was a good friend of Naeth’s, who had performed her foot surgery earlier in her career, who brought up the idea of Lyme again, even though she had previously tested negative. Naeth made an appointment with a Lyme specialist. This time, a physical examination and a Lyme disease DNA blood test revealed that she not only had the disease but two co-infections, Babesia and Bartonella. The diagnosis came at the end of April 2018, nearly five months after her symptoms began. Lyme disease can be difficult to diagnose, says Frank Esper, MD, a physician at the Center for Pediatric Infectious Diseases at Cleveland Clinic in Ohio. “Blood tests can be difficult to interpret, especially if not performed at a validated laboratory or if done incorrectly. Both false positives (a positive test when you don’t have disease) as well as false negatives (a negative test when you do have disease) occur,” says Dr. Esper. While the rash is very typical and is the best clinical sign to diagnose Lyme infection, it is not always present, he says. The other symptoms, like fever, chills, headache, fatigue, muscle and joint aches, are nonspecific and could signal many illnesses other than Lyme, such as a cold or the flu, says Esper.
On the Path to Recovery, Followed by Setbacks
As soon she was diagnosed, Naeth began taking multiple antibiotics. “I was really sick for a while. I had days when I couldn’t get out of bed,” she says. Even though she didn’t feel at her best, she began to return to training in the ways that she could. “I just kept climbing the staircase back to health, and it didn’t take long until I felt about 80 percent of myself,” says Naeth. With multiple antibiotics in her system, she finished sixth at the Ironman Boulder just a month after her diagnosis. Because she was feeling so much better, she decided to go off the antibiotics and see if her immune system could take over. Naeth continued to improve and race, qualifying for the world Ironman championship in Kailua-Kona, Hawaii. “At that time, I had been off antibiotics for about three months and I felt really good,” says Naeth. She had an amazing race and finished in eighth place, exceeding all expectations. After some much-needed time off at Christmas, she began to feel aches and pains again. “It was déjà vu, and things started to go downhill. “When I first started feeling the symptoms, I told my boyfriend that I thought the Lyme was coming back,” she says. Within a few weeks, all her symptoms had returned. “At that point, I just knew,” she says. In late March 2019, Naeth went back to her doctor and restarted the whole process of treatment. “I’ve learned a lot more. I wasn’t on the antibiotics long enough to kill all the bacteria load. Now I’m taking a variety of antibiotics because Lyme disease can change form,” she says. Naeth plans to continue taking the medications until she’s symptom free for two months. The typical period recommended for recovery depends on the severity of symptoms and whether there were complications, says Esper. “Treatment is 14 to 21 days with simple Lyme, and longer if there are complications. Most people are diagnosed and treated in the early stages,” he says. People can usually resume normal activity when they feel well enough and their symptoms are substantially improved, says Esper. “They can return to work and normal activity even if they are still on antibiotics,” he says. People with complications like arthritis, carditis, or meningitis should consult with their physician team before returning to full activity, he says.
A New Outlook: Focusing on the Moment
Naeth’s battle with Lyme disease has made her extremely grateful for health. “When things are amazing in life and you’re healthy, you don’t really realize how important feeling good is, in terms of vitality,” she says. After getting through the pain, negative thoughts, and anxiety that came from Lyme disease, she has a renewed appreciation for the days when she feels strong. The process of dealing with and recovering from Lyme has made Naeth view life differently. Rather than always looking ahead to the next race or goal, she’s appreciating being in the moment more. “Really focusing on the present rather than always looking forward has changed the way I race. My experience has given me more joy in life because I appreciate all the little things a little bit more,” she says.
Listed to Your Body and Be Your Own Advocate
You have to be intuitive and in tune with your body, says Naeth. When I was searching for a diagnosis, I knew something was wrong. It wasn’t just a virus, she says. Seek out second opinions and doctors with whom you have a natural rapport, she says. “It’s important to continue pushing until you find answers that will help you with your health.” If you’re having odd symptoms that don’t add up, Naeth recommends getting tested, with the awareness that the tests are not always correct. Find a Lyme-literate doctor who really understands the disease, says Naeth. To look for a doctor in your area, visit LymeDisease.org.
