Jane Barrows’ troubles with Lyme disease began with a strange mark on her thigh.
In 2008, she was doing some landscaping while wearing a bathing suit at her son’s farm property in Middletown, pulling out roots and reaching into trees to rip down vines.
“The elastic on my bathing suit was irritating,” said Barrows, who is now 86. “There was this mark on the top of my thigh. I thought I was bitten by a spider. I didn’t think anything of it.”
Days later, after traveling to Maine, she started vomiting violently in the middle of the night. Then she was having trouble seeing and was unable to stand up. She spent a week in Maine trying to recover before a dazed ride home that took 12 hours because she had to stop for rest several times.
Barrows said she was initially misdiagnosed with the summer flu but later was told by a specialist that she was afflicted with tick-borne Lyme disease, even though an initial test by her general practitioner was negative.
The experience and the development of long-term symptoms Barrows’ attributes to Lyme, including constant fatigue and bouts of tremors, led her to establish a nonprofit group called Lyme Newport to advocate for people like herself with long-term effects of Lyme disease. The group pushes for better medical treatments and works to raise awareness about early detection.
“The general public just is still very uninformed,” Barrows said recently. “When I got bit, I wasn’t even thinking about ticks. It was not in my brain.”
Now Barrows believes her advocacy work has taken on new importance.
Some public health officials, doctors and advocates have expressed worries that not only has the COVID-19 pandemic overshadowed Lyme disease, but overlapping symptoms can create confusion.
‘[Tick-borne infection] symptoms can overlap and look like COVID.’
DR. JENNIE JOHNSON, Lyme and Tick Borne Infections Center director
“Our real concern was that there would be an anchoring bias,” said Dr. Jennie Johnson, director of Lifespan Corp.’s Lyme Disease and Tick Borne Infections Center at The Miriam Hospital in Providence. “The tick-borne infections we have in Rhode Island can all cause a summer flu, where patients experience chills and fatigue. Those symptoms can overlap and look like COVID. Where patients are being evaluated by telehealth, these symptoms are often assumed to be COVID despite negative testing.”
Part of the challenge is precision in testing for Lyme and other tick-borne illnesses. Lyme disease tests rely on the existence of antibodies in the blood, Johnson said. The development of antibodies can sometimes take weeks after an infection, and the antibodies can stay in the blood for months or even years after the infection has run its course, Johnson said.
That’s why the Lyme disease center at Miriam is taking part in an international study, sponsored by drugmaker Pfizer Inc., which is recruiting newly infected Lyme patients at Miriam, Massachusetts General Hospital and other sites in the U.S., Canada and Europe. Johnson said the study needs 20 adult participants with an active infection and who are willing to provide urine and blood samples, and potentially a tiny skin biopsy.
The hope is to develop a test that detects active illness by looking for a protein found in bacteria spread by deer ticks.
“Finding the bacteria can be hard,” Johnson said. “Instead, we normally rely on detecting the body’s immune response. Even after a patient’s treatment, a Lyme test will remain positive usually for years, and probably for life in some folks. This creates a lot of confusion for patients and providers, especially if a patient is reinfected, which you certainly can be.”
The Lyme disease center is also working on a phase two trial for a Lyme disease vaccine. A previous vaccine was taken off the market in 2002 because it was unprofitable and was dogged by a belief, later disproven, that the vaccine contributed to arthritis, Johnson said.
“Since then, if you look at the [U.S. Centers for Disease Control and Prevention] statistics and also the statistics in Rhode Island, there has been a huge increase in cases of Lyme disease,” Johnson said.
Indeed, Rhode Island is ranked fifth among states in the rate per capita of Lyme disease infection, with 971 cases reported in 2019 – 527 confirmed by testing, the rest considered probable, according to the most recent data available from the CDC.
Johnson said the good news is that Lyme disease is curable, although there’s a small subset of patients with persistent symptoms despite antibiotic treatment. This subset of people has been compared to COVID-19 “long haulers,” and they suffer from fatigue, joint aches, pain and cognitive slowing, which they often describe as “brain fog.” Additional antibiotics don’t help these patients, Johnson said.
Barrows said her struggle has taken her to the Statehouse, where she drew the attention of Sen. Stephen R. Archambault, D-Smithfield, who shepherded a resolution through the Senate requesting that the R.I. Department of Health advise physicians to consider the possibility of tick-borne disease in their patients, noting potential overlap in symptoms with COVID-19. Meanwhile, the DOH said it has already launched its own outreach campaign.
“It’s a very complicated and complex topic,” Barrows said. “This recent Senate bill is a step in the right direction.”
Marc Larocque is a PBN staff writer. Contact him at Larocque@PBN.com.
