“It is just mentally a very challenging disease because it consumes every moment of your life.”
Those with Lyme disease, like Beth Lindorf, often suffer in silence because diagnosis and treatment can be complicated. Lindorf says other members of her family have Lyme disease and it’s a cause close to their hearts.
”I wish that people would just acknowledge that this disease exists here in Utah.”
Lyme disease is the result of a tick bite. It’s more common in eastern states but still a problem here.
Registered nurse and mother Deborah Painter also has Lyme disease. She's taking action to fight the disease and educate others.
”We do have the exodus pacificus tick that can carry the LYME disease here in Utah,” said Painter.
Discovering a tick bite within the first few days is important. Early treatment could cost about $300. But if left undetected....
“If that Lyme disease does not get treated within the first 72 hours and goes into more of a chronic form or goes years later, the average person has to go 2 to 4 years before they get diagnosed. If they don't get diagnosed with that bull’s eye rash it goes to $61,000 per year.
Painter says the cost can escalate: medical bills, lost time at work and in some cases, children with Lyme disease are unable to attend school so tutors are needed.
Painter says active kids who play outdoors a lot are most likely to be infected.
Boys 8 to 15 are the most common to get it because those are the boys that are running around with the dog, rolling in the grass.
Early signs of Lyme disease include a skin rash called erythema migrans, fatigue, chills and fever, headache, muscle and joint pain, swollen lymph nodes.
Many suffers share their Lyme disease stories on the internet. Several we saw tell stories of severe medical challenges.
Proper diagnosis can be difficult and for some people it has taken years to find out they have Lyme disease.
“So I went for about 15 years before I finally really did get a diagnosis for Lyme Disease,” said Steven Baugh.
And for others it means large amounts of medications to treat the different symptoms.
“I take about 80 pills a day and that's a mix of prescriptions and herbal supplements. People don't see those kinds of things. I don't appear to be sick.”
And not knowing why they are sick is frustrating.
“For awhile I thought I was like dying or something and it's scary for six months when your twelve years old you don't know what going on with your body,” said Alyssa Holt.
Once properly diagnosed each person responds differently to treatment.
“A lot of people struggle with that because there's no end in sight there's no time frame for treatment”
But those living with Lyme disease say there is hope
“I got my life back I'm doing all kinds of fun things now”
The Utah Lyme disease Alliance is making a difference.
“I hope that nobody else has it and I hope that people who have it can get feeling better,” said Trakker Danjanovick.