Lyme disease patients frustrated but hopeful by the attention of long-distance drivers

When Christine Menard describes a recent health mess that has ruined their wellbeing, people suffering from Lyme disease and other tick-borne diseases recognize the excruciating symptoms all too well.

There was the extreme tiredness she napped on the weekend, the tachycardia that upset her heart rhythm, and the brain fog that challenged her ability to concentrate.

“Total brain fog,” said Menard, the manager of the Family Pantry in Harwich.

“I was working on a budget, adding up numbers and saying ‘what’s six and four’ and for a second I didn’t 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 problems and loss of concentration are hallmarks of chronic Lyme disease.

“By exhaustion I mean severe exhaustion, not just the slight exhaustion of everyday life, but the kind of disabling exhaustion.”

Great long-term COVID research

But in the case of Menard, 61, it wasn’t the bacteria that transmit Lyme disease, it was the coronavirus that causes COVID-19 that made her sick.

After suffering for months with symptoms that appeared with the novel coronavirus after she was diagnosed in May 2020, Menard became known as a COVID-19 “long-distance runner”.

Now that long-haul vehicles are the subject of an extensive research and treatment effort, people who remain ill after a tick-borne disease hope that emerging science will provide answers for them too.

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

“So many people watch this. There is so much money being spent on treatment and research, ”she said. “You’re really investigating what is causing it. Hopefully, if they can get to the root of the long haul, the Lyme people can benefit from all of the investigation.

The National Institutes of Health recently awarded nearly $ 470 million to a national study involving hospitals and medical centers across the country to examine 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 understood that many more people are affected by the pandemic.

Some researchers estimate that 10% of people with COVID-19 – of which there are 46.1 million in the US – will have persistent symptoms.

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

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A double standard?

But not everyone is personable.

“My initial reaction was, ‘Oh sure, all this money and this time is being spent on these long-haul fliers when no one realizes that there are people with similar symptoms (with Lyme) who are unemployed,” said Catherine Morazzi of Wareham, one Serving the Health Insurance Needs of Everyone (SHINE) volunteer counselor and former health care professional who said she contracted Lyme disease in 2010.

Morazzi said she had grave feelings about the neglect of patients with tick-borne diseases by the Centers for Disease Control and Prevention.

The CDC recently estimated that 476,000 Americans get Lyme disease each year, but it doesn’t say how many later develop what the agency calls Post-Lyme Disease Treatment Syndrome, or PLDTS.

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

Tick ​​sufferers find this attitude insignificant and harmful.

Chronic Lyme disease sufferers feel “misunderstood and not heard”

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

“I have neurological problems. I have a headache, impaired vision, tiredness and ringing in my ears. I have most of the time. “

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“It’s frustrating,” said Farrah Monahan of Pocasset, an occupational therapist who suffered from palpitations, anxiety attacks and malaise for years before being diagnosed with Babesia duncani by her GP and Bartonella by a doctor treating tick-borne diseases.

“I don’t understand why there is no more formal training in all of these microorganisms. We know they are found in animals and humans, ”said Monahan.

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

Dr.  John Aucott

Aucott said that one of the lessons learned from Lyme disease patients is, “These patients are often misunderstood and not heard. It adds an insult to the injury. We hope the same doesn’t happen with COVID long-haul vehicles. “

Similarities: Severe fatigue, cognitive problems, pain

He said people with ongoing Lyme disease and people with long-term COVID-19, chronic fatigue syndrome, and fibromyalgia share a trio of symptoms: fatigue, cognitive problems, 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-range COVID to what he calls long-range Lyme.

The autonomic nervous system appears to be involved in many cases as well as a possible inflammatory response, he said.

Differences: breathing problems

One difference between long-distance COVID drivers and people with persistent Lyme disease is that long-distance COVID drivers often have persistent lung problems as the disease-causing coronavirus attacks the airways.

Getting to grips with her long-standing asthma has been a problem for Menard in the months following her diagnosis with COVID-19.

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

She said she didn’t even have COVID-19 symptoms when she tested positive.

When she got her diagnosis on the job, “I literally picked up a laptop, left the building, and didn’t come back for three to four weeks,” Menard said.

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

“I could speak and breathe when I sat, but I couldn’t stand and speak. It would be like driving a race. I would talk to someone and just slide down the wall. That went on for months. “

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

Menard was one of the early long-haul patients treated in the hospital. She had her breathing tested and an MRI which she said showed she had a minor stroke.

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

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

Menard said she was feeling better in June 2021, more than a year after contracting COVID-19.

“Then it finally started to relax.”

Treatment of COVID long-haul vehicles

“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-distance patients at the ReCover Clinic.

DR. Jai Marathe

The clinic, one of several federal government-sponsored hospitals in the Boston area, has treated 50 patients and has 10-15 on a waiting list.

“We emphasize individualized therapies,” said Marathe.

“The most common symptoms are typically fatigue and respiratory problems. Many people struggle with mental disorders, ”said Marathe.

A team of clinicians, including specialists, occupational therapists and physiotherapists, works with patients on specific symptoms. For example, if the patient has insomnia, doctors see if they are breathing properly, if their muscles have changed, if they need a sleep test or physical therapy, Marathe said.

“We learn a lot from our patients. What do our patients describe? Why do some people seem more affected? It’s more of a give and take. “

For Lyme disease patients, such investments and the commitment of medical teams in large treatment centers are a miracle that borders on a miracle.

Even Morazzi admits that gives her hope, especially since a recent study showed vaccination against COVID-19 relieved long-range symptoms.

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

“There’s a little bit of hope that it would help us get rid of our symptoms,” Morazzi said.

Freeman said the attention paid to long-haul COVID vehicles was a lively topic of conversation during the Cape Lyme Advocacy Support Program Zoom video conference meetings.

“We look at the research and hope that something good comes out of it.”

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