Coburn Dukehart / Wisconsin Watc
Maria Alice Lima Freitas, left, with husband John Oppenheimer. Freitas takes 30 pills a day to deal with symptoms she says are related to 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 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 2019, are due to rheumatoid arthritis.
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 U.S. 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 percent of patients develop more severe cases whose symptoms include debilitating pain, fatigue, brain fog, irritability and sleep disorders.
Wisconsin Watch has spoken with five people in addition to Freitas whose persistent, subjective symptoms fall outside of the mainstream definition of Lyme as an acute disease. 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.
Dr. Elizabeth Maloney, a family physician from Minnesota who leads the Partnership for Tick-Borne Diseases Education, says the latest guidelines on Lyme disease treatment leave such patients out.
“They do not really talk about what to do with patients who do not fully recover,” says Maloney, who helped write the guidelines. “It’s kind of a black box.”
Dark-skinned patients face particular difficulties in getting a Lyme diagnosis. Identifying the red target symbol over light skin tone is easy for light-skinned people, 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 just 9 percent of whites, suggesting the disease may not have been recognized for many Black patients in earlier stages when it’s easier to treat.
Lyme’s Wisconsin roots
In 1970, a Wisconsin dermatologist first documented what would soon be called Lyme disease across the country. Dr. Rudolph J. Scrimenti, a dermatologist in Milwaukee, reported the first case in the United States of the signature rash of early Lyme disease.
The patient had removed a tick from his skin three months earlier in north-central Wisconsin. Scrimenti treated the patient with penicillin based on medical literature he had read out of Europe. In a 1970 journal article, he called the cause of the disease “uncertain.” A few years later, the disease was tied to ticks and named after the town in Connecticut with a cluster of cases.
Researchers in Wisconsin continue to study the spread of black-legged “deer” ticks and the long-term impact of Lyme disease. In a recent presentation, Susan Paskewitz, a medical entomologist at University of Wisconsin-Madison, said ticks have “invaded our state entirely” and, as the climate warms, are marching into Canada.
Xia Lee, a tick biologist in Paskewitz’s lab, has studied the insects for more than a decade. Lee says Lyme-bearing ticks “are always born uninfected,” but they pick up infections as they feed on animal hosts.
Lee notes that Wisconsin never got the proper recognition as the site of the first case of the disease.
“We like to joke about it and say that Wisconsin was actually the first state where Lyme disease was detected,” he says, “but we never got the glory for naming (it).”
Diagnoses: Viral infection, arthritis
Freitas’ Lyme journey began in March 2019 as she battled monthly bouts of fever. She had trouble falling back to sleep late at night. Her hair rapidly fell out. And her body ached and her neck was stiff. She suffered from severe pain in her joints, bones and chest. She also felt tired. Fevers hit her in June and again in July.
By August of that year, Freitas took a medical leave, unable to work.
She checked into St. Mary’s Hospital in Madison for a couple of days. She says the doctor ordered a variety of tests — but not for Lyme. Freitas was diagnosed with a viral infection, which she said failed to explain her full slate of symptoms, including electric sensations on her face and arms and forgetfulness.
Four summers earlier, Freitas says she similarly felt eye pain, knuckle pain, fatigue, forgetfulness and headaches. She recalls a rash that had stayed on her leg for at least three weeks. Freitas saw a rheumatologist at St. Mary’s in early July 2015.
The doctor noticed a red spot on her leg, but it was not the classic Lyme sign of “bull’s-eye” rash. She recalls being tested for Lyme, but the two-step testing came back negative.
The doctor deemed the red spot a likely spider bite and diagnosed her with arthritis. After taking pain medication for a month, Freitas began to feel better. When more symptoms took hold in 2019, Freitas started reading articles about Lyme disease.
Freitas floated the Lyme hypothesis to a rheumatologist, who felt the joint pain and hand swelling looked more like rheumatoid arthritis (RA). Test results also suggested Freitas may have RA.
CDC recommends a two-step testing process for determining whether a person has Lyme disease. Both blood tests must come out positive — or at least indeterminate — for a Lyme diagnosis to be made, the agency recommends.
Freitas tested positive in the first stage of testing but not the second, showing three bands instead of the five that the CDC says are proof of Lyme disease.
She took a different type of test from IGeneX. It indicated she did have Lyme disease. However, IGeneX testing is not conclusive, says Elitza Theel, who directs Mayo Clinic’s Infectious Diseases Serology Laboratory.
“Their criteria are less stringent than the CDC,” Theel says, “which will lead to a higher number of false positive results.”
Even friends and family members question whether the symptoms Freitas describes are real.
“When everybody is saying that it is not Lyme,” Freitas says, “you start to question yourself.”
Coburn Dukehart/Wisconsin Watch
UW-Madison biologist Xia Lee has studied ticks for more than a decade.
Two camps, two approaches
A survey of more than 2,400 U.S. patients found that 50 percent of the respondents reported seeing at least seven physicians before a Lyme diagnosis, and more than half continued to suffer symptoms for at least six months after the recommended short course of antibiotics.
Freitas saw a long string of mainstream physicians for a diagnosis. Then, in the spring of 2020, she began seeing out-of-network doctors in and outside of Wisconsin, and many of them didn’t take insurance.
She tried an intravenous antibiotic therapy but it didn’t work, and she rapidly dropped 30 pounds. She continued to search for doctors.
Freitas began seeing Dr. Samuel Shor, a Virginia-based internist who works for the Tick-Borne Illness Center of Excellence in Woodruff, Wisconsin. Shor, who also is a clinical associate professor at George Washington University, sees patients in Wisconsin via telemedicine, charging $490 for an initial consultation.
Dean Nardelli is an associate professor who studies later-stage Lyme disease at the UW-Milwaukee’s Biomedical Sciences Lab Programs. Nardelli says Lyme disease patients exhibit a variety of symptoms and severity, sometimes caused by the inflammatory responses against the microbes.
Nardelli is investigating Lyme-related arthritis that persists after treatment with antibiotics. He says science can be a slow process of acquiring new knowledge, and it’s “tough” for patients who are suffering with no clear answers.
That can lead them to seek out untrustworthy practitioners or fall for costly treatments that don’t work. “You go out and find doctors that diagnose everything as Lyme disease,” Nardelli says.
Freitas says she trusts Shor, who has embraced her IGeneX test results for Lyme and has also diagnosed her as having several afflictions: babesiosis, which has some of the same symptoms as Lyme and can come from the same ticks; bartonella, also known as cat scratch fever; and chronic fatigue syndrome.
Freitas now takes Epsom salt baths and uses an infrared sauna for “detoxification.” And she takes 30 pills each day, interspersing antibiotics with herbs and dietary supplements, which cost upwards of $1,200 a month.
She also meets with Shor monthly online from her house at a charge of $250 per visit, which insurance does not cover. She says it is money well spent.
“I’m having peace of mind,” Freitas says. “I feel like I’m getting better.”
Freitas says she started regaining weight and her mind is a bit clearer. “I’m getting out of the graveyard,” she says.
But her husband, John Oppenheimer is more cautious, saying to Freitas: “What I’m seeing is you’re better relative to the beginning of (2021), because you’re still not good.”
Former WPR/Wisconsin Watch reporter Bram Sable-Smith contributed to this story. Wisconsin Watch is the news arm of the Wisconsin Center for Investigative Journalism.
