Lyme disease takes its toll on teacher
Ryan Saulsbury never saw what changed his life.
He likely encountered it years ago, perhaps when he was out hunting small game with his dog. An outdoor enthusiast, who enjoyed hunting and fishing, he was outside much of the time.
Then in August of 2011, his mother died of a massive stroke after surgery on a carotid artery. Saulsbury started to notice symptoms of memory loss and confusion. They were minor if somewhat alarming for the absentmindedness - like leaving his work key in the fridge.
But those moments were attributed to grief in the sudden loss of a loved one.
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Then 37, Saulsbury found his left wrist began to hurt. A week later it was swollen. The diagnosis was tendinitis. A week later the pain and swelling was in his right wrist, his knees, hips, elbows, ankles.
"I could hardly walk," he said.
Saulsbury, a Pillager science teacher, knew joint pain was a Lyme disease symptom. He went back to the doctor and asked for a Lyme test. The test was negative, but Saulsbury said his doctor noted test results are not always accurate.
The American Lyme Disease Foundation said one of the most vexing issues in Lyme disease diagnosis is the debate regarding the reliability of testing. Saulsbury said he can't believe there isn't a more conclusive test available for people.
Chronic Lyme disease
Most Lyme disease cases, as of 2012, are in 13 states including Minnesota. Lyme disease is caused by bacterium and is transmitted through the bite of infected blacklegged ticks, commonly called deer ticks. Not everyone sees the tick or a rash.
Saulsbury said his doctor started him on a short course of antibiotics, the standard treatment for Lyme. He started to improve. But it didn't last. He found himself suffering from a cascade of worsening symptoms.
A rash covered his body from his footbeds to his neck. The joint pain and memory issues continued. He found himself at a loss for words, a difficult position for a school teacher. Saulsbury, a teacher at Pillager for 12 years, has been teaching middle school students. This fall, he'll be at the high school full time, teaching forensics, environmental science, aquatic biology and ecology of Minnesota. Saulsbury was Pillager School's teacher of the year in 2010-2011.
When he went to a doctor versed in Lyme disease treatment, Saulsbury found he was dealing with Lyme and a second tick-borne illness called babesiosis. It began a journey that has taken years of treatment, involved multiple doctors, and created frustration in terms of symptoms and costs.
The Centers for Disease Control and Prevention reports patients treated with "appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely. ... Approximately 10-20 percent of patients (particularly those who were diagnosed later) following appropriate antibiotic treatment, may have persistent or recurrent symptoms and are considered to have post-treatment Lyme disease syndrome."
It is also called chronic Lyme disease.
"It's excruciating," he said, adding his pain level was seven to eight out of 10 every day. "I could hardly function."
Disease takes a toll
He's been taken to the emergency room multiple times, once after suffering stroke-like symptoms at school. Being wheeled past students and seeing the looks on their faces was, he said, the worst day of his teaching career.
Getting a cocktail of medications to work has been a challenge. When Saulsbury was tempted to take a spoon to carve out the skin and muscle in his arm as a way to get rid of the pain, doctors decided his body was reacting adversely to all the medications.
He tried natural remedies, rebuilding his immune system and Essential Oils as a pain reliever to wean off Vicodin. He was taking 37 pills a day two months ago and is now down to 28. Saulsbury said he spends $828 a month on medications, with insurance covering two of them. He estimates he's spent $20,000 out-of-pocket since the start of the disease and taken 350 bottles of pills.
This weekend, family, friends and neighbors are helping Saulsbury with a three-day garage sale at his Baxter home to help him offset out-of-pocket costs.
Saulsbury said asking for help has been hard, but he doesn't know what else to do and can't go back to where he was before some of the treatment began to reduce his daily pain.
"This has been the most humbling experience of my life," he said. "I'm not going to win this without help."
Getting all the help with the garage sale and donations from family who live a distance away has been heart-warming, Saulsbury said.
Saulsbury worries about a Minnesota Board of Medical Practice for a five-year moratorium, enacted in 2010, on investigating or disciplining action based solely on long-term prescribing of antibiotic treatment for chronic Lyme disease.
The science teacher also has concerns about antibiotic prescriptions, wondering if 14 days is as effective as 28. But as with other parts of Lyme disease treatment, there are varying viewpoints.
"There is currently no scientific evidence that any other treatment approaches, such as repeated or prolonged courses of therapy, increasing the dosage or combining or alternating antibiotics are any more effective in curing the disease than the standard regimen of shorter duration," the American Lyme Disease Federation reports.
The majority of Lyme cases occur in June, July and August, but ticks are active again in the fall. Saulsbury said he's given up hoping he'll ever be symptom free and now just hopes to manage the pain and discomfort and raise awareness of the issues.
"It's a real thing and it's a real problem and it's huge," he said.
Garage sale fundraiser
Ryan Saulsbury's fundraising garage sale is 9 a.m. to 4 p.m. Friday and Saturday and noon to 4 p.m. Sunday at 13727 Glenwood Drive in Baxter.
Saulsbury also plans to sell custom-designed T-shirts aimed at raising awareness for Lyme that say "Get Ticked Off."
Other fundraisers are expected to include a brat sale and having glow bracelets available for a $2 donation. People may also make donations to the Ryan B. Saulsbury Benefit Account at Bremer Bank.