A few years ago, Lia Gaertner and a few of her childhood friends completed the Tough Mudder endurance race, a fundraiser for the Wounded Warrior Project, in California’s Sierra Mountains. The race challenged participants to overcome an 11-mile military-style obstacle course while running at high altitude with a 1500 foot change in elevation. For many competitors, this was just another difficult race, but for Lia this was a milestone in her remission from two Lyme (Borrelia spp.) infections, one contracted from a tiny tick bite in New York and another one, 10 years later, in California. After years of living with undiagnosed Lyme disease, Lia had finally received a diagnosis and proper treatment, and was finally well enough to enjoy the activities that she loved and to work with the Bay Area Lyme Foundation to further tick-borne disease research and education.

In the mid-1990’s, after graduating from the University of California, Berkeley with a bachelor’s of science degree, Lia moved to upstate New York to pursue a graduate degree at Cornell University. Despite the fact that upstate New York had one of the highest rates of Lyme infected ticks in the country, Lia was not told this, nor was she taught about tick bite prevention or how to recognize the symptoms of tick-borne infections. She didn’t know that nymphal ticks can be the size of the period at the end of this sentence or that ticks inject anesthesia so most people don’t feel their tick bite. Eventually, after a year of leading forest field trips with her students and engaging in field research, Lia developed what she thought was the flu. No one realized it at the time, but her symptoms were the result of her first infected tick bite. After noticing several alarming new symptoms, such as heart palpitations, tachycardia, air hunger, and interstitial rib pain, Lia visited the Cornell University Health Center. The resident physician diagnosed a new onset heart murmur and cardiac electrical abnormalities, but could not identify the cause. No test for Lyme disease or co-infections was recommended or performed.

Over the next 10 years, Lia experienced many life changes, but her cardiac symptoms and mysterious illness persisted. She married her college boyfriend, returned to the West Coast for her husband to start medical school, and started a family. After a 2008 family camping trip in Mendocino County, one of the most Lyme endemic areas of California, Lia found a red annular rash on her chest and a few weeks later, her cardiac symptoms worsened, while new symptoms emerged. Over the next few months, Lia developed a stiff neck, migratory joint pain, fevers, night sweats, neurological issues, swollen lymph nodes, and many other confusing symptoms. Her husband suggested that she talk to one of his UCSF Santa Rosa family medicine residency colleagues who was familiar with tick-borne diseases. The doctor and the labs confirmed that Lia was positive for Lyme disease and a co-infection with Babesia and that she had both old and new infections - one from the New York tick bite and one from the recent California tick bite. The doctor explained that because her symptoms mimic a variety of other diseases, misdiagnosis is common. It took over a year of treatment with several different antibiotic combinations, integrative medicine treatments, and nutritional support to return Lia back to health. The mysterious cardiac symptoms of the prior 10 years and all of her new symptoms were eradicated and she was able to run the Tough Mudder race.

Lia Gaertner with her childhood friends at the Tough Mudder endurance race in the Sierra Mountains, California

The fact that Lia was not properly diagnosed and treated until her second tick bite, 10 years after receiving her first infected tick bite, certainly contributed to the magnitude of her illness. Only recently has the CDC put out information warning people about the effects that the Lyme bacteria can have on the heart (e.g. Lyme carditis, heart block, etc).  Lia understands that the more Lyme disease is discussed and researched, the better the outcomes will be for others in the future. Lia sits on the Bay Area Lyme Foundation Advisory Board and has, over the past eight years, served on their Science Team and their Education Team. Lia has twice served as an active consumer advocate peer reviewer for the CDMRP’s Tick-Borne Disease Research Program and is grateful that this research mechanism was established in 2016. She thinks it’s critical that consumer advocates and scientific experts work together to review research proposals and collaboratively decide which projects will have the most relevant impact on the patient population. Lia and the Bay Area Lyme Foundation continue to work towards making Lyme disease easier to diagnose and simple to cure.

Links:

https://www.bayarealyme.org/about/leadership/

https://www.cdc.gov/lyme/signs_symptoms/lymecarditis.html