Doctors Who Treat Chronic Lyme Disease – Maria Alice Lima Freitas is pictured with her husband John Oppenheimer at her home in Middleton, Wisconsin on October 6, 2021.
Mainstream medicine says that the tick-borne infection is a short-term illness. But some patients insist they have Lyme-caused symptoms that last for years.
Doctors Who Treat Chronic Lyme Disease
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 the University of Wisconsin-Madison.
Chronic Lyme Disease
Freitas says her undiagnosed Lyme disease sapped her energy, fogged her thinking and caused pain in her neck, shoulders, hands and right knee. She has postponed her admission to medical school three times while struggling with numerous symptoms she attributes to Lyme.
Most of her doctors say she is wrong, and that her symptoms, which started in 2015, are due to rheumatoid arthritis, or RA.
Freitas is among thousands of Wisconsinites who say they suffer from a chronic or long-term version of the disease. The infection comes from small ticks found primarily in the northeastern United States, including 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 that the state had 3,076 estimated cases of Lyme disease in 2020 — a doubling over the past 15 years. But medical entomologists say Lyme cases in the state could be 10 times higher than reported.
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The medical establishment calls Lyme a short-term illness that usually resolves quickly with antibiotics. Self-described “Lyme-literate” practitioners argue that patients like Freitas are suffering from a long-term version of the disease, often called chronic Lyme disease.
The orthodox position held by most scientific experts and some professional associations – and supported by the US 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 test for Lyme disease, approved by the Food and Drug Administration and supported by insurance companies, has been criticized by patients and practitioners as insufficient 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 disappear after a short course of antibiotics if the infection is recognized and treated early. Another 10 to 20 percent of patients develop more severe cases whose symptoms include debilitating pain, fatigue, brain fog, irritability and sleep disturbances.
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Dark-skinned patients have particular difficulty getting a Lyme diagnosis. Identifying the red target symbol on light skin tone is easy for people with light skin, but not so with dark skin tones. A recent UCLA study found that 34 percent of black patients with Lyme disease had neurological complications compared to only 9 percent of whites, suggesting that the disease may not be recognized for many black patients in earlier stages when it is easier to treat.
Patients with persistent symptoms struggle to get a diagnosis. Wisconsin Watch spoke with five people in addition to Freitas whose persistent, subjective symptoms fall outside the mainstream definition of Lyme as an acute illness. Caught in the middle of the debate, they face emotional, physical, mental and financial exhaustion as they bounce between specialists in search of explanations for their pain.
Xia Lee, a postdoctoral vector biologist in the University of Wisconsin-Madison Department of Entomology, shows an adult black-legged tick, in the Susan Paskewitz Lab in Madison, Wis., on Sept. 21, 2021. Lyme disease in Wisconsin has grown as the black-legged ticks that cause the disease have spread across the state. Coburn Dukehart/Wisconsin Watch Diagnoses: Viral Infection, Arthritis
Freitas’ Lyme journey began in March 2019 when she battled fevers every month. She had trouble going back to sleep at night. Her hair fell out quickly. And her body stiffened as if in the neck. She had severe pain in her joints, bones and chest. She also felt tired. At first, Freitas attributed the exhaustion to the bladder surgery she had in April. Fever struck her in June and again in July.
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The excruciating pain made it difficult for her to work. It felt like someone was scraping the inside of her right knee with a knife. By August of that year, Freitas was on medical leave, unable to work.
She checked into a Madison hospital for a few days. She said the doctor ordered a variety of tests — but not for Lyme. Freitas was diagnosed with a viral infection that she said could not explain her full slate of symptoms, including electrical sensations on her face and arms and forgetfulness.
Four summers ago, Freitas said she felt similar eye pain, knuckle pain, fatigue, forgetfulness and headache. She recalls a rash that remained on her leg for at least three weeks. In early July 2015, Freitas saw a rheumatologist at St.
The doctor noticed a red spot on her leg, but it wasn’t the classic Lyme sign of the “bull’s eye” rash. She recalls being tested for Lyme, but the two-step test came back negative.
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The doctor considered the red spot to be a possible spider bite and diagnosed her with arthritis. After a month of taking pain medication, Freitas began to feel better. As more symptoms took hold in 2019, she felt that the viral infection alone did not explain them. Freitas began reading articles about Lyme disease.
Her husband, John Oppenheimer, recalls his wife devouring medical journal articles. Freitas has a bachelor’s degree in biology from UW-Madison and a master’s degree in marriage and family therapy from Edgewood College. In late 2018, a Florida-based medical school admitted her to a pre-med program, but her declining health disrupted those plans.
Freitas floated the Lyme hypothesis to a rheumatologist, who felt the joint pain and hand swelling were more like RA. Test results also suggested that Freitas may have RA.
Maria Alice Lima Freitas is comforted by group leader Alicia Cashman during a meeting of the Madison Area Lyme Support Group at the East Madison Police Station in Madison, Wis., on February 8, 2020. Freitas believes she suffers from chronic Lyme disease, but struggled to find doctors who agreed. She often cried during the meeting — the first she had attended — as other attendees shared their personal experiences. She later said she became emotional after realizing she was not imagining her symptoms. She attended the meeting with her husband John Oppenheimer, left.
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Freitas was not convinced. “I have other symptoms that cannot be explained by RA,” she said. She had read journal articles about the difficulty in Lyme diagnosis, and found that the recommended tests were “pretty wrong.”
CDC recommends a two-step testing process to determine if a person has Lyme disease. Both blood tests must be positive — or at least inconclusive — to make a Lyme diagnosis, the agency recommends.
Both tests measure antibodies that can stay in a person’s system for months or even years and therefore may not indicate an ongoing infection.
And the test has other disadvantages. “It can’t tell what the severity of the disease (is), and it can’t tell if you’ve responded to treatment,” Theel said. “It’s important to remember that we don’t make a diagnosis based on a test result alone.”
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She went on to say that the test also cannot be used to detect other infections that can cause Lyme-like symptoms. “You have to test for the other infections,” she said.
Freitas tested positive in the first stage of the test but not the second, showing three bands instead of the five that the CDC says are evidence of Lyme disease.
She asked the rheumatologist to order another type of test from IGeneX, a California-based commercial laboratory, hoping that the insurance company would cover at least some of the cost. It didn’t.
The results of that $2,600 test came in December 2019. It indicated she had Lyme disease. However, the IGeneX testing is also not conclusive, Theel said. “Their criteria are less stringent than the CDC’s,” she said, “which leads to a higher number of false positive results.”
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Each point represents one case of Lyme disease and is randomly placed in the patient’s residence. The presence of a point in a state does not necessarily mean that Lyme disease was acquired in that state, since the place of residence is sometimes different from the place where the patient was infected.
Graphic Courtesy Centers for Disease Control and Prevention, National Center for Emerging and Zoonotic Infectious Diseases, Division of Vector-borne Diseases
Oppenheimer said Freitas, once very independent, became increasingly dependent on him as she struggled with her health. The two met when she was a single mother driving a Madison Metro bus and taking juggling classes there
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