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N.Y. — Lyme and other tick-borne diseases can have a horrible impact on the human body, both physically and mentally. Sometimes, it can prevent you from doing the things you love. That’s what happened to Endicott resident Beth Scoville, who continues to battle Lyme today
“I can’t really say exactly where I was bit,” Scoville said. “I had been hiking in Pennsylvania, and then I had gone to a conference in Florida, and gone running before meetings in thick brush, and I noticed it two days later while in Florida. So, whether it was Florida or Pennsylvania, I don’t know, but noticed it, put it in a little baggie, took it back to my doctor here. The diagnoses, though, took quite a long time.”
Scoville said there is a lack of education when it comes to ticks and Lyme disease, even among medical professionals
“My primary care doctor said, ‘Well, you don’t have a bullseye rash, so you don’t have Lyme,’” Scoville said. “From what I understand now over the years, a lot of people don’t get the bullseye rash. I never got it. He said, ‘Well, if you get a rash, come back. Let me know. Any issues, let me know. We might do some blood tests in a few months.’ Time passed. Never got the rash. I started training for a half marathon and became really ill.”
Scoville said she experienced a combination of heart palpitations, sweating, brain fog and nausea. She went to the emergency room, where doctors initially thought she was having a heart attack
“For somebody who was an avid long-distance runner, I could not believe that that would be true. And it wasn’t,” Scoville said. “They kept me overnight, ran a bunch of tests, and said, ‘Okay, you know what? You’re not having a heart attack. But have you ever been bit by a tick?’ And I said, you know, actually, a few months ago I was, but I was never treated. And she said, ‘Okay, I think that that could be it, so we’re going to put you on some antibiotics.’ Of course, now, what I know, the two weeks of antibiotics that they gave me now were never going to be enough because it was now chronic. Anytime that you’ve had Lyme disease and it’s over a week, it becomes chronic. So that worked as like a Band-Aid, but then it came back full force like another month later.”
Scoville said the illness began neurologically affecting her brain, causing her to have trouble remembering where she was going while driving
“It was really scary,” Scoville said. “So, I went back to the emergency room and this time they diagnosed me with MS, which Lyme is known as the great imitator. And anything from MS, Lou Gehrig’s disease, Alzheimer’s, it imitates a lot of those diseases. So, for me, again, I didn’t know any better. And I thought, wow, now they’re telling me I have MS. I had white spots on my brain from an MRI. You know, I left the ER with them saying, you know, we’re going to send you for a spinal tap. It didn’t, I went home thinking that it was it. Super upset. I was a single mom with two kids. I’m like, how, what am I, like, how am I going to do this? How am I going to live this life? I don’t know what the next chapter is going to be.”
A friend in Pennsylvania suggested Scoville get a second opinion, though she said she still did not think it was Lyme disease because she had already been treated for it once
“I went down to a Pennsylvania hospital, got a second opinion, took the MRI disc with me. And that emergency room doctor said, you know, this, this disc is, it is serious, but hearing your whole history, I am going to send you to a Lyme doctor,” Scoville said. “And that was the beginning of my healing journey.”
Scoville said the first step in her healing journey began with that Lyme doctor. She said regular blood tests never showed she had Lyme disease, including a test from an infectious disease specialist in Binghamton
“My Lyme doctor referred me to this place called IGeneX, and they have more specialized sensitive testing that came back like screaming Lyme disease,” Scoville said. “It also tested for co-infections. Ticks carry a multitude of other diseases and I had a few.”
Running has always been a large part of Scoville’s life, and the disease halted that
“When you are a runner and you’re so highly driven and focused, I remember being in the hospital bed and, you know, talking to the doctors and I asked, ‘Can I run this half marathon?’ Well, because they had ruled out the heart attack, they were like, well, yes, of course,” Scoville said. “But you don’t know what you don’t know. There was no way I was going to run that half marathon. And I did not, I ended up giving my bib away to a friend. I didn’t run another race for almost two years.”
Scoville said walking and running were out of the question, and even getting up every day was a chore. She was taken out of work and off driving during that time
Scoville said she is now back to doing what she loves, though the experience left a lasting effect
“It’s been fantastic. I feel like me a lot again, but you almost don’t trust it because it was such a traumatizing thing to go through and you’re sick for so long,” Scoville said. “People would say, ‘You took antibiotics and you look fine. You must be better.’ I think it’s hard for people to understand that you’re still sick, even though you’re not showing it. It’s a mental battle and a physical battle.”
Scoville said the lack of understanding from others created loneliness during her recovery. She found support in the Southern Tier Lyme support group and, as a runner, came up with the idea for a race called the Finish Lyme 5K. Proceeds from the race go toward a medical scholarship
“One of the important pieces of this is there’s a lot of out-of-pocket expenses that are not covered. And it’s super expensive,” Scoville said. “For me, it cost $20,000. But I have met people who have spent $100,000, if not more. Just to get started with proper treatment can sometimes be a thousand dollars or more.”
There are two scholarships through the run, both named for local residents who died from Lyme disease complications, Dylan Dickerson and Keara Mitchell. The scholarship money helps families begin treatment with a Lyme doctor
“It feels fantastic to see this event grow and continue to help survivors in our community,” Scoville said. “I feel like even if you’re not somebody who has gone through it, you know somebody who has Lyme disease to some degree. It just brings everyone together for a wonderful community event. It’s fantastic. I just hope that we keep growing it, so we keep giving out more scholarships to help people.”
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