Chronic Lyme patients on Cape share COVID-19 long-haulers' pain — and hope for cure

When Christine Menard describes a recent health ordeal that shattered her sense of well-being, people suffering from Lyme and other tick-borne diseases recognize the distressing symptoms all too well.

There was the extreme fatigue that had her napping through weekends, the tachycardia that upset her heart rhythms, and the brain fog that challenged her ability to concentrate.

“Total brain fog,” said Menard, who is executive director of the Family Pantry in Harwich.

“I’d be working on a budget and adding up numbers and say, ‘What’s six and four,’ and for a second not know what it was.”

Dr. John Aucott, director of the Johns Hopkins Lyme Disease Clinical Research Center, said fatigue and cognitive problems such as memory issues and loss of focus are hallmarks of chronic Lyme disease.

“By fatigue, I mean severe fatigue, not just the mild fatigue of everyday living but the kind of disabling fatigue.”

Major long-haul COVID research

But in the case of Menard, 61, what sickened her was not the bacteria that transmits Lyme disease but the coronavirus that causes COVID-19.

After suffering for months with symptoms that came after her May 2020 diagnosis with the novel coronavirus, Menard became known as a COVID-19 "long-hauler."

Now, as long-haulers become the subject of major research and treatment efforts, people who remain sick after getting tick-borne diseases hope that emerging science will provide answers for them as well.

“I’m glad COVID is getting so much publicity,” said Lisa Freeman, of Brewster, a nurse and founder of the Cape Lyme Advocacy Support Program.

“So many people are looking into it. There’s so much money being spent on treatment, research," she said. "They’re really looking into what’s causing it. If they can get to the root of why it’s long haul, hopefully Lyme people will be able to get some benefit" from all the investigation.

The National Institutes of Health recently awarded nearly $470 million for a national study involving hospitals and medical centers across the country looking into the long-term effects of COVID-19.

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It’s money Lyme researchers can only dream of, but Freeman, who volunteers to vaccinate people against COVID-19, said she understands many more people have been affected by the pandemic.

Some researchers estimate that 10% of people who had COVID-19 — of whom there are 46.1 million in the U.S. — will have persistent symptoms.

“So many more people have COVID,” Freeman said.

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A double standard?

But not everybody is sympathetic.

“My first reaction was, ‘Oh sure, all this money and time is going to be spent on these long-haulers when no one recognizes there are people with similar symptoms (with Lyme) out of jobs,” said Catherine Morazzi, of Wareham, a volunteer SHINE (Serving the Health Insurance Needs of Everyone) counselor and former medical doctor who said she contracted Lyme disease in 2010.

Morazzi said she has hard feelings for the Centers for Disease Control and Prevention’s neglect of tick-borne disease patients.

The CDC recently estimated that 476,000 Americans are stricken each year with Lyme disease, but it does not say how many go on to develop what the agency calls Post-Lyme Disease Treatment Syndrome, or PLDTS.

The CDC says there is no treatment for PLDTS, but most sufferers get better over time.

Tick-borne disease sufferers see that attitude as cavalier and harmful.

Chronic Lyme sufferers feel 'misunderstood and not heard' 

Freeman said she was co-infected with Lyme and Rocky Mountain spotted fever in 2002 but never completely recovered and has not held a paid job in 20 years.

“I have neurological problems. I have headaches, blurred vision, fatigue and ringing in my ears. I have that most of the time.”

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“It’s frustrating,” said Farrah Monahan, of Pocasset, an occupational therapist who suffered from heart palpitations, anxiety attacks and malaise for years before getting a diagnosis of Babesia duncani from her primary care physician and bartonella from a physician who treats tick-borne disease patients.

“I don’t understand why there isn’t more formal education into all these microorganisms. We know they exist in animals and humans,” Monahan said.

It’s especially important to be aware of the risk here on Cape Cod, she said, calling the area “tick central.”

Aucott said that one of the lessons learned from Lyme disease sufferers is “these patients are often misunderstood and not heard. It adds insult to injury. We’re hoping the same thing doesn’t happen with COVID long-haulers.”

Similarities: Severe fatigue, cognitive problems, pain

He said people with persisting sickness from Lyme and people with long-haul COVID-19, chronic fatigue syndrome and fibromyalgia share a trio of symptoms: fatigue, cognitive issues and pain, including musculoskeletal pain. 

They also report insomnia, anxiety and depression, Aucott said.

Their symptoms “are remarkably similar,” Aucott said in a seven-minute video comparing long-haul COVID with what he is calling long-haul Lyme.

The autonomic nervous system seems to be involved in a lot of cases as well as a possible inflammatory response, he said.

Differences: Respiratory issues

One difference between COVID long-haulers and people with persistent Lyme is that COVID long-haulers often have lingering lung problems, since the coronavirus that causes illness attacks the respiratory system.

For Menard, getting her long-time asthma under control was an issue in the months following her diagnosis with COVID-19.

She said she had climbed Mount Kilimanjaro in Tanzania the year before her positive test and remained fit.

She said she didn’t even have any COVID-19 symptoms when she tested positive, having gone for a test to inspire fellow employees to also take advantage of a free testing site in Foxboro set up by the Greater Boston Food Bank for food pantry associates.

When she got her diagnosis while at work, “I literally picked up a laptop and walked out of the building and didn’t return for three to four weeks,” Menard said.

She said she never had a cough or fever, but she developed breathing problems.

“I could speak and breathe if I was sitting, but I couldn’t stand and speak. It would be like I had run a race. I’d be talking to somebody and I’d just slide down the wall. That went on for months and months.”

Relief came from a pulmonologist at Boston Medical Center who increased her asthma medication by 10 times.

Menard was one of the early long-haul patients to be seen at the hospital. She had her breathing tested and an MRI, which she said revealed she’d had a small stroke. 

She also had cardiac tests, including a Holter monitor test and an echocardiogram. 

“The cardiologist said something happened, but it probably won’t kill you.”

Menard said she started feeling better in June 2021, more than one year after she contracted COVID-19.

“That’s when it finally started to ease up.”

Treating COVID long-haulers

“Usually time will tell how much recovery there will be,” said Dr. Jai Marathe, an infectious disease doctor at Boston Medical Center, where she works with long-haul patients in the ReCOVer clinic.

The clinic, one of several at Boston area hospitals sponsored by the federal government, has seen 50 patients and has 10 to 15 on a waiting list.

“We are stressing individualized therapies,” Marathe said. 

“The most common symptoms are typically fatigue and respiratory complaints. A lot of people struggle with mental health disorders,” including depression, anxiety and PTSD, Marathe said.

A team of clinicians, including specialist physicians and occupational and physical therapists, work with patients on specific symptoms. If the patient has insomnia, for instance, clinicians see if they are breathing properly, if there have been changes to their musculature, if they need a sleep test or physical therapy, Marathe said.

“We are learning a lot from our patients. What are our patients describing? Why do some people seem to be more affected? It’s more like a give and take.”

For Lyme disease patients, such investment and involvement from medical teams at major treatment centers is a marvel bordering on the near miraculous.

Even Morazzi acknowledges it gives her hope, especially since a recent study showed that vaccination for COVID-19 cuts long-haul symptoms.

She wonders if an anti-Lyme antibody shot currently in the works would have similar beneficial effects on Lyme disease patients in addition to preventing the tick-borne disease from developing in the first place.

“It does give a little hope that it would help us get rid of our symptoms,” Morazzi said. 

Freeman said the attention being paid to COVID long-haulers has been a lively topic of conversation during Zoom videoconferencing meetings of the Cape Lyme Advocacy Support Program.

“We’re looking at the research and hoping something good is going to come out of it.”

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