Living with Lyme

Fall 2019

By Meredith Haas
Photographs by Stephanie Craig

Exposed wires and floor joists loom above Cyndi Murray’s dining room table as part of ongoing renovations to remove black mold from her Cape Cod-style home in Middletown.

“Part of our kitchen had to be torn out because of the mold,” she adds. “It was plumbing leaks…the mold had grown inside the walls.”

According to Murray, she’s part of a small fraction of the population that suffers from chronic inflammatory response syndrome as a result of exposure to biotoxins. In her case, it’s a certain species of mold usually found in water-damaged buildings.

While the presence of mold in a home is always a cause for concern, most people don’t suffer the symptoms it triggered for Murray, who in addition to mold sensitivity, also has Lyme disease. “You need to have this genetic disposition to be sensitive to mold as well as Lyme or another disease affecting your immune system,” she says.

Her sensitivity to mold often exacerbates the Lyme symptoms of confusion or short-term memory loss. She also has some pain in her hands.

“I’m not sure what is from the Lyme or what is from the mold. It’s hard to tell where one begins and one ends,” she says.

Lyme disease is one of the more well-known tick-borne bacterial diseases that’s rapidly spreading across the Northeast and elsewhere because warmer temperatures and milder winters mean an uptick in deer and mice host populations and therefore increasing tick populations.

The Northeast is particularly vulnerable because temperatures are rising faster here than anywhere else in the lower 48 U.S. states, according to the National Climate Assessment. Rhode Island alone saw a 22% increase in Lyme cases between 2016 and 2017, according to the Rhode Island Department of Health.

“WE CALLED IT MY SLEEPING SICKNESS BECAUSE NO ONE COULD FIGURE OUT WHAT WAS WRONG …”

But many cases don’t get reported, if at all, until well after the infection occurs because the tests still aren’t reliable, even after 40 years since the disease was first discovered. Lyme is also known as the “great imitator” because it mimics a whole host of other illnesses from Parkinson’s disease and schizophrenia to multiple sclerosis and chronic fatigue syndrome, making it that much more difficult to diagnose.

“We called it my sleeping sickness because no one could figure out what was wrong with me,” Murray says, describing the dizziness and extreme fatigue she felt during one summer growing up in Connecticut when she was around 14 years old. “They ruled out mono … but I slept the entire summer.”

Now 62, she says she also remembers having concentration problems back in high school and college but seemed to recover and didn’t think much about it until she had children.

“Right after I had my second child, I started to notice the symptoms that I couldn’t explain. Maybe it was the hormones that reactivated it,” she says, describing similar fatigue but also muscle twitches, heart palpitations, and traveling pain throughout her body.

She was diagnosed with Lyme five years after her younger son was born. As Murray read more about the disease and its symptoms, she became more observant of her children.

“[My younger son] had some strange pains in his head. He would scream and hold his head, and then run off and play,” she recalls, adding that he also seemed to have attention problems in school.

She originally thought he might have attention deficit disorder (add), but suspected Lyme the more she read about how the disease can imitate other illnesses.

“I had read an article that if you live in a Lyme-endemic area, and your child has been diagnosed with add, you should have them tested. That’s partly why I thought maybe [he might have it],” she says.

Although his initial test came back negative, Murray says she noticed on the results several bands, or lines, representing different antibodies present in response to a bacterium.

To be diagnosed with Lyme disease, five specific bands need to be detected. She wasn’t convinced the testing was adequate and brought her son to a specialist in Connecticut who ran a Western blot test, which not only measures antibodies, it also tests them against 10 different proteins found on the Lyme bacteria.

The specialist confirmed that Murray’s younger son had Lyme, as well as two common co-infections (Babesiosis and Bartonella) that can accompany Lyme and produce symptoms such as fevers, fatigue, and headaches.

“You’ve got to find things that give you joy.”

Soon after her son was diagnosed, Murray testified before the Rhode Island General Assembly in 2003 to advocate for insurance coverage for treatment of chronic disease.

The assembly passed legislation, the first in the nation, that required that all insurance plans cover diagnostic testing and long-term treatment of Lyme in recognition that when treated early, most patients recover, but when treatment is delayed the bacterium enters the nervous system and can lead to chronic illness.

Murray and her family spent the next 14 years driving from Middletown to New Haven several times a year for treatments with a Lyme disease specialist. 

On one of the visits, her younger son described having vibrations in his fingers. Her older son, who accompanied his brother to the appointment, revealed that he also experienced those same vibrations.

“I have to bite my finger to stop it,” he said, Murray recalls.

He, too, tested positive for Lyme disease with the same co-infections. Murray later tested positive for both infections as well, which is why she believes she must have passed on the disease while pregnant.

“There was no doubt in the doctor’s mind because they were the same diseases and similar protein patterns on the Western blot,” she says.

During that time, her sons were prescribed many different combinations of antibiotics with noticeable improvement, says Murray.  “I would see the big difference in their school work and handwriting. Their work improved considerably when they were on antibiotics and deteriorated when they went off of them. It was amazing.”

As for Murray herself, her ongoing health struggles have meant she has had to take a leave from work, and she relies on her husband or sons to drive her to appointments because of a few occasions where she’s momentarily lost consciousness. “I passed out for a few seconds going over the Jamestown bridge to work one day … That freaked me out.”

Still, between the mold removal and treatments, she was doing well until April.

“My body is rejecting the medication, and I’m feeling worse than ever … so now they’re changing my medicine, and I feel like I’m back to square one after six months,” she says with slight exasperation.

And while Murray will continue to test new treatments to help manage her mold sensitivity and reduce her Lyme symptoms, she is adamant about maintaining an active life.

“I’ve lived with this for so long, and I’m tired of going to doctors,” she says. “But I love to garden, and I know I risk exposure [to ticks] every time I go out, but it gives me joy. You’ve got to find things that give you joy.”

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