Treating Lyme Disease can be far more complicated than you might imagine

(York) — When you hear about Lyme Disease, you might think standard, straightforward treatment, maybe, a couple weeks of prescription drugs.

For some, that’s the case. But others say the disease can be far more complicated than they ever imagined.

“Lots of anxiety. I’d be lucky to sleep two hours a night. Couldn’t concentrate, little everyday problems that would come up would be monumental,” says Tom Nickell, who lives in West York

Both he and his wife, Zelda, have been dealing with Lyme Disease.

His story starts in 2011, when he started having serious cardiac issues: his beats per minute got up to 163 at one point.

Then, he was depressed and anxious.

And so some friends mentioned Lyme disease, and in July 2012, he was diagnosed with it.

“I can see that I’ve had it for quite some time,” says Nickell, who now thinks Lyme was in his system for at least 20 years. “Biking, hiking, running. I was definitely exposed. I’m just very thankful that my wife kept after me and I finally relented to get tested.”

Ticks transmit Lyme disease by biting humans, and a bull’s eye rash can appear. But it doesn’t always show up, and some people may not even feel the bite.

After about a year of intensive prescription drug treatments, Nickell finally started to feel better, and now says he’s at his best in decades, riding up to 50 miles a day on his bike.

Antibiotics can treat the disease like they did for him, but reactions can vary widely among patients.

 

Not all cases are straightforward

Take his wife Zelda. Diagnosed a year before Tom, she’s still dealing with Lyme’s effects.

“He’d be ‘Well just get up and exercise, you’ll feel better. I’m like, you don’t understand, it takes everything in me to breathe.’ And people don’t understand, they think you’re lazy or you’re just nuts, or you’re a hypochondriac and it’s very frustrating.”

Zelda says she’s gone on and off prescription drugs since 2011, and yet, the disease affects her life every day. There’s no predicting when the fatigue will come, and she’ll often end up with what she calls – brain fog. When I asked her a simple question, she struggled.

“What’s it called?”

Pause.

“This is Lyme”, she motions to me, to explain the delay.

A statewide survey this year, the first one since 1998, found black-legged ticks in all 67 counties. That was up from 48 counties in the last survey.

Meanwhile, an increasing number of people are getting diagnosed with Lyme.

In the midstate between 2010 and 2012, state Health Department statistics show Lyme Disease cases nearly doubled.

Juniata, Mifflin and York counties had the highest rates of cases in 2012.

What can be done?

“You can landscape your yard all you want, but you’re still going to get those exposures that happen. And it’s easy to check yourself after you’ve been out in the yard and look for the ticks on your body, remove them,” says Matt Hellwig at the state Department of Environmental Protection. He says trying to get rid of the arachnids wouldn’t make sense.

Hellwig works in Pennsylvania’s forests almost every day, and says almost every day, he’s pulling a tick off himself.

But, for the rest of us, 80 percent of tick exposures happen where you might least expect it – at the edge of a backyard, not in the deep woods.

Chris Moulton has been hiking since he was a kid. During a trek on Blue Mountain, which straddles Cumberland and Perry counties, he talks about how he deals with Lyme Disease.

“The impression I get is it really doesn’t go away, it still kinda lurks somewhere in my body. So you always think, anytime you get some kind of ailment, you’ll think oh maybe it’s that darn Lyme Disease,” Moulton says.

Moulton says he’ll spray DEET on himself – experts recommend putting it on your clothes too. And of course, he’ll check himself every time he comes out of the woods.

“I definitely think there’s more awareness of it now. There’s more reports of it, the media talks about it, there’s more and more articles coming out about it. So I think people are generally more aware of it, but then I think there’s also a lot of people that don’t really think about it too much.”

Two groups feud over treatment

But there is a bundle of controversy over Lyme. Two groups are locked in a battle over whether long-term Lyme even exists, and what the appropriate treatments might be.

The International Lyme and Associated Diseases Society argues the Infectious Diseases Society of America isn’t including a wide range of experts in its discussions about the disease, while IDSA says it’s simply following established science.

The controversy was even a topic of discussion with Tom and Zelda Nickell. Living with the disease for years, they’ve both done their research, chased down theories and more. But for now, Zelda is looking forward.

Says Zelda: “I’m hopeful. God, seeing other people get better. My husband’s recovery, his recovery is remarkable.”

As the debate about Lyme goes on, in West York, Zelda Nickell will continue to take a batch of prescriptions and supplements and try to push through what is proving to be a more mysterious disease than one might think.