Tick Bite Ignored: Woman's Harrowing Lyme Journey

In June 2021, Diana Cust discovered a tick bite on her knee while living in Portland, Maine. Despite contacting her OB/GYN's office, she was reassured that the bite, not attached for over 24 hours, posed little risk. Cust did not develop a bull's-eye rash or flu-like symptoms, leading her to believe all was well during her pregnancy.

Months after giving birth, Cust experienced unusual symptoms like nausea, fatigue, night sweats, and jaw pain, initially attributed to postpartum exhaustion. By spring 2022, her health declined dramatically, manifesting as neurological issues including POTS, severe OCD, and uncontrollable crying spells.

Cust also developed mast cell activation syndrome (MCAS), causing severe digestive issues and extreme food restrictions. Neurological symptoms such as brain fog, vertigo, confusion, tremors, and sensory overload further complicated her life. Despite seeking help from over 20 doctors, many suggested anxiety, leaving her feeling dismissed and invalidated.

One terrifying incident involved losing feeling in her limbs while driving, necessitating a 911 call. After a two-year ordeal with numerous potential diagnoses, Cust finally received a stage four neurological Lyme disease diagnosis in March 2024, nearly three years after the initial tick bite.

This diagnosis brought relief but also financial and emotional strain, as treatments were not covered by insurance. Cust credits her support system for helping with childcare, transportation, and fundraising for treatment. She deeply regrets the loss of precious motherhood moments during her illness.

Cust has since seen remarkable improvement, with her symptoms reduced by 80%. She now advocates for others to trust their bodies and seek accurate diagnoses, urging for increased Lyme-literacy among medical professionals and emphasizing the importance of taking every tick bite seriously, disregarding outdated assumptions.