Maria Alice Lima Freitas
Maria Alice Lima Freitas is pictured at her home in Middleton, Wis., on Oct. 6, 2021. Freitas believes she has been suffering from Lyme disease since 2015. She has seen a large number of doctors, who she says have varying degrees of belief in her diagnosis. She is among thousands of patients in Wisconsin who believe they have a long-term version of the disease called chronic Lyme. Mainstream medicine considers Lyme a short-term illness that generally resolves quickly with antibiotics. (Coburn Dukehart / Wisconsin Watch)
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If life had gone as planned, Maria Alice Lima Freitas would be in medical school, inspired by the career of her father, a surgeon who practiced in Brazil. But instead of changing careers, the 49-year-old therapist retired from University of Wisconsin-Madison.

Freitas says her undiagnosed Lyme disease has sapped her energy, fogged her thinking and caused pain in her neck, shoulders, hands and right knee. She has three times deferred her entrance into medical school while struggling with myriad symptoms that she attributes to Lyme.

Most of her doctors say she is mistaken, and that her symptoms, which began in 2015, are due to rheumatoid arthritis.

Maria Alice Lima Freitas is pictured at her home in Middleton, Wis., on Oct. 6, 2021, with her husband John Oppenheimer. Freitas’ life and career have been upended by a series of symptoms — including joint pain and brain fog — that she blames on chronic Lyme disease. (Coburn Dukehart / Wisconsin Watch)

Freitas is among thousands of Wisconsinites who say they are suffering from a chronic or long-term version of the disease. The infection comes from tiny ticks primarily found in the northeastern United States, including in Wisconsin — which is a hot spot for Lyme, ranking No. 5 among states for Lyme cases in 2019.

Nationally, Lyme disease infects an estimated 476,000 people a year. The Wisconsin Department of Health Services reports the state had 3,076 estimated cases of Lyme disease in 2020 — a doubling in the past 15 years. But medical entomologists say Lyme cases in the state could be 10 times higher than reported.

The medical establishment calls Lyme a short-term disease that usually quickly resolves with antibiotics. Self-described “Lyme-literate” practitioners argue patients like Freitas suffer from a long-haul version of the disease, often called chronic Lyme disease.

The orthodox position held by most scientific experts and some professional associations — and endorsed by U.S. Centers for Disease Control and Prevention — is that Lyme disease is an acute infectious disease. Clinical diagnosis is based on a “bull’s-eye” rash, other specific symptoms and two-tiered antibody tests. Treatment is by short courses of oral antibiotics. And persistent symptoms rarely occur.

The standard antibody testing for Lyme disease, cleared by the Food and Drug Administration and endorsed by insurance companies, has been criticized by patients and practitioners as inadequate to detect all cases of the disease. Some practitioners offer alternative tests and treatments, but insurance does not cover the cost of their care. And in extreme situations, such doctors risk disciplinary action.

For most people, Lyme disease is treatable and curable. Most patients report their symptoms cleared after a short course of antibiotics if the infection is recognized and treated early. Another 10-20% of patients develop more severe cases whose symptoms include debilitating pain, fatigue, brain fog, irritability and sleep disorders.