Doctors Who Treat Lyme Disease – Maria Alice Lima Freitas is pictured with her husband John Oppenheimer at her home in Middleton, Wis. on Oct. 6, 2021.
Conventional medicine says that a tick-borne illness is a short-term illness. However, some patients report having symptoms caused by Lyme that last for years.
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If life had gone according to plan, Maria Alice Lima Freitas would have attended medical school, inspired by the career of her surgeon father, who practiced in Brazil. But instead of changing careers, the 49-year-old therapist retired from the University of Wisconsin-Madison.
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Freitas says the undiagnosed Lyme disease has sapped his energy, clouded his thinking and caused pain in his neck, shoulders, arms and right knee. He has delayed his admission to medical school three times while battling numerous symptoms he attributes to Lyme.
Most of his doctors say he’s wrong and that his symptoms, which began in 2015, are due to rheumatoid arthritis, or RA.
Freitas is among thousands of Wisconsinites who say they suffer from the chronic or long-term version of the disease. The infection comes from small ticks found primarily in the northeastern United States, including Wisconsin, a hot spot for Lyme, with the 5th highest number of Lyme cases among states in 2019.
In the country, an estimated 476,000 people are infected with borreliosis annually. The Wisconsin Department of Health Services reports that there were an estimated 3,076 cases of Lyme disease in the state in 2020, which has doubled in the past 15 years. Medical entomologists say the number of Lyme cases in the state could be 10 times higher than reported.
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The medical establishment calls Lyme disease a short-term illness that usually resolves quickly with antibiotics. Self-described “Lyme literates” say patients like Freitas are suffering from a long-term version of the disease, often called chronic Lyme disease.
The orthodox view of most scientific experts and some professional associations, 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 assays. Treatment is with short courses of oral antibiotics. And lasting symptoms are rare.
Standard antibody testing for Lyme disease, approved by the Food and Drug Administration and approved by insurance companies, has been criticized by patients and doctors as insufficient to detect all cases. 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 that their symptoms resolve after a short course of antibiotics if the infection is caught and treated early. Another 10 to 20 percent of patients develop more severe cases, with symptoms including debilitating pain, fatigue, brain fog, irritability, and sleep disturbances.
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Dark-skinned patients have particular difficulty getting a Lyme diagnosis. Identifying a red mark symbol over a light skin tone is easy for fair skinned people, but not for dark skin tones. A recent UCLA study found that 34 percent of black patients with Lyme disease had neurological complications, compared with just 9 percent of white patients, suggesting that many black patients may not be recognized at earlier stages when the disease is easier to treat.
Patients with persistent symptoms struggle to obtain a diagnosis. In addition to Freitas, Wisconsin Watch has spoken to five people whose persistent subjective symptoms fall outside the mainstream definition of Lyme as an acute illness. In the middle of the discussion, they face emotional, physical, mental and financial exhaustion as they bounce between specialists in search of explanations for their pain.
Xia Lee, a vector biologist in the Department of Entomology at the University of Wisconsin, shows an adult black-legged tick in Susan Paskewitz’s lab on Sept. 21, 2021, in Madison, Wisconsin. as the black-legged ticks that cause the disease are spread across the state. Coburn Dukehart/Wisconsin Watch Diagnoses: Viral infection, arthritis
Freitas’ Lyme journey began in March 2019 when she battled monthly bouts of fever. He had trouble falling back to sleep late at night. His hair fell out quickly. And his body ached and his neck was stiff. He suffered from severe pain in his joints, bones and chest. He also felt tired. At first, Freitas attributed the exhaustion to bladder surgery in April. A fever struck him in June and again in July.
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Unbearable pain made it difficult for him to work. It felt like someone was scraping the inside of his right knee with a knife. By August of that year, Freitas went on medical leave because he was unable to work.
He checked himself into a hospital in Madison for a couple of days. She said the doctor ordered a variety of tests, but not for Lyme. Freitas was diagnosed with a viral infection, which he said did not explain all of his symptoms, including electrical sensations in his face and hands and forgetfulness.
Four summers earlier, Freitas said he felt the same eye pain, knuckle pain, fatigue, forgetfulness and headaches. He recalled a rash that had persisted on his leg for at least three weeks. In early July 2015, Freitas visited Maarja’s rheumatologist.
The doctor noticed a red spot on her leg, but it wasn’t the classic “bull’s eye” sign of Lyme disease. She recalls being tested for Lyme, but the two-step test came back negative.
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The doctor thought the red spot was a possible spider bite and diagnosed him with arthritis. After taking painkillers for a month, Freitas began to feel better. When more symptoms appeared in 2019, he realized that a viral infection alone could not explain them. Freitas began reading articles about Lyme disease.
Her husband, John Oppenheimer, recalled that his wife devoured medical journal articles. Freita holds 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 medical school in Florida accepted him into a pre-med program, but his declining health derailed those plans.
Freitas floated the Lyme hypothesis to a rheumatologist who felt the joint pain and swelling in the hands were more like RA. The test results also indicated 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 Department in Madison, Feb. 8, 2020. Freitas believes she has chronic Lyme disease, but has. tried to find doctors who would agree. She often cried throughout the meeting – the first meeting she attended – as other participants shared their personal experiences. She later said she became emotional after realizing she had not imagined 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 RA can’t explain,” she said. He had read journal articles about the difficulty of diagnosing Lyme and found the recommended tests to be “quite fallacious.”
The CDC recommends a two-step testing process to determine if a person has Lyme disease. The agency recommends that both blood tests must be positive — or at least indeterminate — to be diagnosed with Lyme.
These two tests measure antibodies that can stay in a person’s system for months or even years, and therefore may not indicate an ongoing infection. “It can’t tell when you were infected,” said Elitza Theel, who directs the Infectious Disease Serology Laboratory at the Mayo Clinic.
And there are other drawbacks to testing. “It can’t tell how severe the disease (is) or whether you responded to treatment or not,” Theel said. “It’s important to remember that we don’t diagnose based on test results alone.”
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The testing also cannot be used to detect other infections that can cause Lyme-like symptoms, he continued. “You should test for these other infections,” he said.
The Freitas test was positive in the first round of testing, but not in the second, showing five instead of three bands, which the CDC says is evidence of Lyme disease.
He asked the rheumatologist to order another type of test from the commercial laboratory IGeneX in California, hoping that the insurance company would cover at least some of the cost. Did not do.
The results of this $2,600 test were received in December 2019. It revealed that he had Lyme disease. But IGeneX’s testing isn’t conclusive either, Theel said. “Their criteria are less stringent than the CDC’s,” he said, “which leads to a higher number of false positives.”
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Each point represents one case of Lyme disease and is randomly placed in the patient’s county of residence. Having a spot in a state does not necessarily mean that Lyme disease was acquired in that state, as sometimes where the patient lives differs from 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 fiercely independent, became increasingly dependent on her as she struggled with her health. They met when she was a single mother riding a Madison Metro bus and juggling
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