How It Feels to Have Lyme Disease — and the Bills That Come With It
Key takeaways:
Ed Doyle was already dealing with other health conditions when he was diagnosed with Lyme disease. His medical bills started piling up.
Shortly after being diagnosed, he lost his job. He and his wife ended up selling their house to make ends meet.
Ed says Lyme disease symptoms felt unbearable at times, but antibiotics make him feel like “a new person.”
Ed Doyle knew he wasn’t making his symptoms up. But for a long time, medical experts couldn’t explain them.
He was living in Rhode Island in 2011 and developed insomnia, which was unusual for him. Until then, “I could sleep on top of a picket fence in a thunderstorm,” he says.
His migraines were almost unbearable.
“I can remember one night that I actually seriously considered running my head into the wall to knock myself out,” Ed says. “Nothing, nothing would take care of it.”
Ed’s wife, Sharon, took him to the hospital that night. There, he got intravenous morphine, which finally tamed the excruciating pain. But the migraines kept coming.
Then came joint pain in his knees, hips, elbows, and ankles.
“There would be nights I would be in tears talking to my wife, saying, ‘I am so sorry for putting you through this. I know you can’t see it. I know you can’t feel it. But trust me, it’s real, and I don’t know what to do,’” Ed says.
Nonsensical conversations
Sometimes, Ed would start conversations at the dinner table and nonsensical words would come out of his mouth.
His three boys found that funny, but Ed’s fears were growing that he may have stroke-like symptoms.
At work, he would sometimes freeze in front of his computer and have no idea what he had planned to do.
He got tested for lupus,psoriatic arthritis, syphilis, rheumatoid arthritis, and even Ebola. At one point, a computed tomography (CT) scan showed lesions on his brain.
One doctor said the symptoms sounded like Lyme disease from a tick bite. But insurers didn't want to pay for the expensive tests without more proof of Lyme disease.
Ed’s family doctor finally told him, “I want you to see a mental health professional.”
Ed remembers that comment feeling hurtful.
He told the doctor, “You can see the deformity in my hand because my muscles are cramping so badly. You can see the nerves jumping. That’s not my mind doing that.”
‘The great impersonator’
Ed learned later that Lyme disease is sometimes referred to as “the great impersonator” because its symptoms mimic those of many other diseases.
He decided to do his own research online. Among the symptoms he read about was a rash that looked like a bullseye, which is a telltale sign of Lyme.
But he also read that a bullseye rash is not the only type of rash that Lyme disease can cause. He had other rashes on his arm, but they didn’t itch or sting.
While he was researching, he became aware of medical professionals who specialized in diagnosing and treating Lyme disease.
In Rhode Island at that time, there was only one such doctor anywhere near him. He made an appointment.
He discovered he was co-infected with Lyme disease and babesiosis, a malaria-like disease also carried by ticks. And he and the doctor were able to track both diseases back to a tick bite while hiking.
Every year, 476,000 people in the U.S. are diagnosed and treated for Lyme disease, according to the CDC. That number, however, also includes people treated who did not end up having the disease, the CDC notes.
Though Lyme disease is transferred to humans by ticks, not all ticks carry the disease.
Twice-daily self-injected antibiotics for 8 months
Because Ed had signs of disseminated Lyme disease — the stage at which bacteria can spread throughout the body — he needed intravenous antibiotics. He injected the antibiotics twice a day for 8 months.
“I didn’t feel like I was going to die. I wanted to die,” Ed says. “That’s how bad Lyme disease can get if it’s untreated.”
He paid substantial out-of-pocket expenses beyond what insurance would cover.
He also was taking medications for high blood pressure, diabetes, and acid reflux.
He says his out-of-pocket expenses cost half of what he made as an IT director each month. Paying other bills fell by the wayside, as he describes in a TikTok video he made for GoodRx.
Shortly after being diagnosed with Lyme disease, Ed says he lost his job. “There were all kinds of medicines that I needed. Everything’s so expensive. So, my wife and I had nowhere to turn. We ended up selling our house. It’s like, ‘Now what are we gonna do?’”
Someone told them about GoodRx discounts, and that helped, he says.
Still, the drain of Lyme disease was way beyond anything he had felt before.
“Exhaustion with Lyme disease means you can’t raise your arm off the couch,” Ed says.
‘Don’t feel stupid’
Ed, who’s now 65 and lives north of Tampa, Florida, started to do videos on Lyme disease to help others avoid the heartache he experienced.
His videos contain advice such as, “Don’t feel stupid that you feel this way and nobody thinks that you’re really sick.”
And if you do have Lyme disease, join a support group, because everyone experiences the disease a little differently.
That’s where information and tips on how to manage Lyme disease get passed along. These include trying out Epsom salt baths, dry saunas, and Alka-Seltzer Gold to relieve some symptoms.
He now takes magnesium when joint pain gets bad, and vitamin D3 supplements as Lyme causes those levels to be very low long term.
But he says after treatment, “I’m a new person.”
Compared to the symptoms he’s lived through, he says, “I can live with what’s left over.”
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