COVID Long Haulers Help People With Lyme Disease Get the Compassion They Deserve

Ask Rebecca Niziol, 34, about life before Lyme, and she remembers bouncing around with endless energy. A life coach and yoga instructor, she loaded her schedule with hikes, Pilates workouts, client calls, socializing with friends, and weekend getaways. Then, in July 2020, she felt something change.

It started with neck pain and headaches. At first, she dismissed them as side effects of sitting in a car for hours on a road trip from Chicago to Colorado to visit family. Over the following weeks, however, she continued to develop flu-like symptoms. It was the early months of the pandemic, so his immediate thought was COVID. But the tests always came back negative.

She couldn’t practice yoga for a month. “I was in bed 20 hours a day,” she says. Her doctor suspected pandemic-related loneliness and anxiety, but her instincts told her it was different. Something more physical, endless. She wouldn’t learn that she had been battling Lyme disease for over a year, when she got in touch with a “Lyme-knowing” doctor and her labs confirmed it.

Brittany Barry of Utah faced an equally confusing crisis last summer. Given that she described herself as a ‘healthy and fit 32-year-old woman’ at the time, doctors attributed the muscle aches, fatigue and shortness of breath to the long COVID – a term for the phenomenon. health problems that persist long after someone has tested positive for the virus. (She had COVID in February 2021.) One doctor blamed the changes after pregnancy, while another told her to see a counselor.

Fast forward to January 2022, when she found a doctor who did blood tests that indicated Lyme which had likely gone undetected for years.

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Parallel experiences

Any coincidence that these women’s diagnoses came when they did? Maybe. But much like Niziol and Barry, many who have been affected by the long COVID, Lyme, or even both over the past few years are finding they are telling a similar story. There’s been a shift in empathy for patients with chronic and autoimmune conditions who are stuck in a cycle of nonspecific symptoms that medical experts don’t fully know what to do with, says Niziol, who still manages Lyme today. today.

Despite many mysteries still to be solved (we’ll get to that!), doctors and patients can agree that the suffering is real, as is the serious shift in perspective, says Robert Kalish, MD, rheumatologist and director of the disease clinic of Lyme at Tufts Medical Center. “The pandemic has helped people grasp the idea that you can get an infection, kill the original cause, and suffer lasting consequences from the damage that’s been done, even if it’s hard to detect or understand,” he said.

Up to 20% of Lyme patients report that their symptoms come back or never really go away.

When you are sick, you crave validation. Recognition gives you a better chance of getting care, not to mention the dignity of your reality. “There are a lot of similarities in the experience between long-haulers and people with chronic conditions like mine that are misunderstood or misdiagnosed,” says Niziol. “I may not have what you have, but I relate and deeply sympathize.”

Diagnostic Dilemma

More compassion is huge. But that doesn’t erase the fact that Lyme is the most common tick-borne infection in the United States, with about 476,000 new cases each year (although only about 35,000 are reported each year due to the difficulty to diagnose). Since 1991, the prevalence of Lyme has almost doubled as deer ticks, the main vectors of the disease, have expanded their territory. Additionally, rising temperatures are expected to increase Lyme cases by more than 20% between 2036 and 2065, according to a recent study.

So yes, a very real and growing threat, but Lyme has been steeped in controversy since its discovery in the 70s. For one thing, there is no perfect test: false negatives and false positives happen often, making it difficult to get a correct diagnosis. Nor do all positive people experience the only telltale symptom – a target-shaped rash. (Niziol and Barry have no recollection of this.)

To further complicate the path to an accurate diagnosis, Lyme, dubbed “the great imitator,” can resemble a host of other conditions, such as multiple sclerosis, depression, fibromyalgia, or a general viral infection. Niziol faced multiple misdiagnoses as his symptoms progressed to brain fog, blurred vision, bouts of numbness in his limbs and memory lapses, as months passed without answers. “I felt like a human shell,” she says. “My drive was gone; the joy left my body.

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Long life expectancy

If and when do you get a definitive reading? The fight does not necessarily end there. With prompt detection and treatment (usually four weeks or more of antibiotic treatment), the infection is usually easy to resolve at first. But for many, including Niziol, the symptoms persist.

In August 2021, just over a year after her first symptoms appeared, and still desperate to find a doctor who truly understood, she searched online for specialists in her area. This time, she visited Casey Kelley, MD, a family and integrative medicine physician. Dr. Kelley performed a series of tests and diagnosed Niziol with chronic Lyme disease. (Just when you thought things couldn’t get any more complicated!)

The most common diagnosis is post-treatment Lyme disease syndrome, or PTLDS. But some doctors go so far as to use the term “chronic Lyme disease,” although it’s not a diagnosis recognized by the National Institutes of Health. That’s because in one camp you have pros who question the legitimacy of that term indicating an ongoing infection, citing human studies that show the drugs are effective in killing the bacteria that cause Lyme disease. . On the other side, there are doctors like Dr. Kelley who believe chronic Lyme disease is real even though it’s not known why it happens. (She points to studies that suggest long-term infection remains.)

Whatever you call it, “it’s not controversial: there is no proven effective treatment for persistent Lyme disease,” says Linden Hu, MD, professor of immunology at Tufts University School of Medical. Depending on your doctor, the solutions could involve medications, supplements, and/or an anti-inflammatory diet. “A situation two steps forward, a step back,” explains Niziol.

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Health on the horizon

The reassuring news is that real progress is being made. Over the past few years, tens of millions of dollars have been spent fighting Lyme. Columbia University researchers are working on brain imaging studies to better understand symptoms like chronic fatigue and pain that accompany the infection.

Breakthrough innovations to beat the disease are also in the pipeline. A vaccine tested in guinea pigs (thanks, Yale researchers) triggers an immune reaction to a tick bite that helps detach the insect, inhibits its ability to feed on you, and reduces transmission of the pathogen. Another candidate, from Valneva and Pfizer, works by killing bacteria in bloodsuckers. Early studies indicate the shot is safe and you may be able to get it as early as 2025.

Researchers at Tufts University have also set themselves the lofty goal of eradicating Lyme by 2030. “The best chance of making sure no one gets Lyme is to hit it where it lives – in mice, birds and ticks in the wild,” says Dr. Hu, who is co-director of the initiative. His team is testing a bait-delivered drug that targets Lyme in wild mice in Massachusetts, followed by sites in other states, to cover all key target areas over the next five years.

      And progress for one chronic disease means progress for others. Longtime COVID patients are being treated with many of the same interventions that have worked for persistent Lyme symptoms. The similarities in how these diseases affect the immune system are becoming apparent, says Dr. Kelley. “Awareness and patient advocacy will continue to grow from here,” she says. “We’re going to see new preventative measures to help people get their lives back faster.” Individual contacts with people with persistent disease (Lyme, long COVID, MS, etc.) adds Niziol. She exchanged DMs via Instagram with people who helped her find podcasts and advocacy groups. After months of treatment, Niziol is trying to stay active again and remains optimistic. “I’m not going to ignore the tough parts or downplay them,” she says. “But with more understanding, more empathy, there is hope.” Right on.

          This article originally appeared in the July/August 2022 issue of Women’s health.

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