VALPARAISO – An avid angler who frequents Trail Creek is fighting for his life – and financial future – after contracting a debilitating disease while fishing in Michigan City.
On March 8, Donnie Moore of Valparaiso started to experience "feelings of hot flames shooting through his body, unexplained fatigue, numbness, tingling, weakened eyesight, and loss of use of his arms or legs at differing times," according to his cousin, Karen Houghtaling of Chicago.The 37-year-old was seen by five doctors and even a neurologist in Chicago, but they could not figure out the problem. It was a specialist who finally diagnosed late-stage Lyme disease in April, she said.
And although "some studies suggest there are 1 million cases of Lyme disease each year, insurance hardly provides coverage for even the most basic treatments," Houghtaling said. "My cousin is currently looking at thousands of dollars in medical bills."
To help, she started a GoFund Me page at gofundme.com/help-donnie-fight-latestage-lyme-disease?u=21 to help offset some of the costs.
The disease, transmitted through the bite of a black-legged tick, causes chronic pain and makes it difficult to work, Moore said.
"To be honest, I feel like s***," he said. "Seriously, I feel like I have the flu. My whole body aches; my joints feel like they have sandpaper in them. I have a burning sensation that runs from my head to my abdomen. It goes from annoying to unbearable."
He said medications help with the nerve pain and burning feeling, but "it’s more of a Band-Aid. They just cover it for a little bit, but none of them make it go away. It just makes it bearable for a while."
Moore said losing the ability to do everyday things has been the toughest – he's only recently been able to return to work.
"Losing your everyday life and your ability to wake up and feel optimistic," he said. "You don’t sleep for a few days. You can’t go to work or do the things you used to love. You’re not interested in the things you used to care about.
"It drains you … I was telling the doctor about stuff like going to work and being stuck in traffic, you know, I would love to have those little annoying things in my life."
Doctors are not certain when he contracted the disease.
"The doctors think maybe last summer at the very least is when I got bit for it to progress into the nervous system. I had no idea how complex and how difficult it is to treat ... I thought you go to the doctor and get antibiotics and you’re good in a few weeks.
"I didn’t know that you could get bit by a tick and your immune system can suppress it for months or even years ... Then all of a sudden, something triggers it and the next thing you know, you’re in the ER."
And that's the problem with insurance, he said.
"Insurance will pay for some prescriptions, but other than that, all visits to the doctor I have to cover. Any blood work I need done, I have to pay for. My MRIs before I was diagnosed, I have to pay for that ...
"The issue is that with basic Lyme disease, when you first get it, most doctors will put you on a CDC-recommended 21-day course of antibiotics. That’s if you have it for a few weeks and it clears it up. But once it gets into your nervous system, the CDC guidelines don’t account for that.
"So the insurance is only going to cover the 21-day antibiotics. After that, you’re on your own. However, the tricky thing is that it’s very common for it to take months for you to even test positive. Plus, getting a diagnosis can be complicated. Many doctors aren’t familiar with Lyme and rely on blood tests and these are not accurate."
He said the CDC understands that after treating Lyme disease, patients can continue to have symptoms, but doesn’t know why.
"This is called Lyme disease syndrome or post-Lyme disease syndrome. ... The CDC doesn’t recommend lifelong antibiotics. So you have the option of switching to supplements so the immune system can battle it. The supplements are like $300 a month. How do you afford them on top of everything else?"
There are advanced treatment centers that focus on Lyme disease, but the cost is high.
"There’s one in Arizona (and Switzerland), but those are about $40,000. ... Once I finish my antibiotics, I would like to look at other holistic ways of treating it. ... That’s all stuff that costs a fortune and insurance doesn’t cover any of it."
Houghtaling said for her cousin, the fight is just starting.
"Late-stage Lyme disease is extremely difficult to treat and specialists do not accept insurance. This is just the beginning of the battle and from the research that has been done, Donnie has a long road ahead of him."Between hospital bills, doctor's appointments, labs, testing, ongoing treatment ... the estimated cost for treatment ranges from $10,000-$80,000..."
The GoFund Me page, which has raised almost $4,000 and has a goal of $20,000, is strictly for medical bills, Moore said. "That’s the most important is to pay off the medical bills and go from there."
He wants people to know how bad the disease can be.
"What I tell people is how debilitating it can be. You hear in the media about it being tick season, but there needs to be more awareness about how terrible this disease is ... and if you get bit by a tick, you might get sick for more than just a month."
He said support from friends and others has helped a lot.
"I would like to say thank you. The messages have been amazing. From the financial aspect, I am not one to ask for it, but it’s extremely needed. Honestly, when you’re suffering from Lyme disease, you’re not even in a place to figure things out.
"Lyme disease affects your brain. You can’t think straight. Even the most basic things like brushing your teeth in the morning and taking a shower become overwhelming. So getting those messages from people and seeing those donations from people that you haven’t had contact with in years, knowing that people do care, that really makes a big difference and helps when you’re depressed and don’t see light at the end of the tunnel," Moore said.
People need to learn more, Houghtaling agrees.
"Scientists predict Lyme disease could affect 2 million Americans by 2020, turning it into a nationwide epidemic. And Trail Creek is used recreationally by thousands of people every year who fish, kayak, boat and hike."
Moore said he's fished in Michigan City since he was a teenager. He shore fishes, and said he only started seeing ticks there in the last five years.
In 2016, according to CDC data, there were seven cases of Lyme disease diagnosed in La Porte County. Porter County had 18, St. Joseph County 21, and Berrien County, Michigan, 23.
And that number is growing. Just 10 years ago, La Porte County had only three cases, Porter County one, and St. Joseph and Berrien counties two each. Fifteen years ago there were no cases in La Porte or Porter counties, and two each in St. Joseph and Berrien.
The CDC estimates 300,000 people in the United States are diagnosed each year, but many cases may go unreported. Other studies suggest the incidence of Lyme may be as high as 1 million cases per year.
"With summer rapidly approaching, there needs to be more awareness around the real threat ... Raising awareness can make such an impact in people being more vigilant in taking steps to prevent tick bites," Houghtaling said.
She's hoping Moore's story raises awareness – and inspires kindness.
"For those of you who know and love Donnie, you know he has a huge heart and will do anything he can to help those around him. So now it is time for us all to rally around him."
She said there are four ways to help. "Pray – pray for complete healing. Donate – any amount helps. Share the GoFund Me page on Facebook – sharing helps raise 300 percent more funds.
"And reach out to Donnie – your support is extremely encouraging to him. It means more than you will ever know to Donnie and his family."
Her cousin "has slowly returned back to work after being on medication since April. Even though he has some really bad days, he's feeling positive, even though he's not feeling great."
"Knowing that people care about you is huge," Moore said. "I am having days now that are a lot better than they were before."
Protecting yourself from Lyme disease
• Avoid high risk locations such as wooded areas, heavy brush and tall grass
• Remove leaves or brush from lawns and keep grass cut short
• Use chemicals toxic to ticks around home or work areas
PROTECTION (in areas where ticks may be present)
• Wear light-colored clothes to better see ticks
• Wear long-sleeve shirts and tuck pant legs into shoes or socks.
• Use appropriate insect repellant
• Wear a hat
• Shower, and wash and dry clothes immediately after potential exposure
• Do a careful body search for ticks
• Remove ticks with tweezers
• 80 percent of people who contract Lyme disease develop a bull's-eye rash in the area where bitten
• Patients suffer flu-like symptoms that include fever, lymph node swelling, neck stiffness, generalized fatigue, headaches, migrating joint aches and muscle aches
– Source: The Centers for Disease Control and Prevention