MONTICELLO, Minn. - Joan Schuster and her two teenage children swallow a cocktail of medications along with their family dinner. The dozens of pills have become part of their daily routine.
“No appetite lately,” said Schuster, 54, a Monticello mother of four, pushing away her meal.
If only there were a magic pill to bring joy back to the family’s days, long ravaged by Lyme disease.
Schuster said she and her two children, Alyssa, 14, and Jack, 13, were all diagnosed with Lyme disease in 2015. Her husband, Dave, is the only member of the family to escape the diagnosis.
“I don’t wish this upon my worst enemy," Schuster said. "It’s one of the cruelest diseases out there. It has no mercy on you."
BLACKLEGGED TICK EXPANDS, BRINGING DISEASE
Lyme disease is an infection spread through the bite of a blacklegged tick, caused by the bacterium Borrelia burgdorferi.
An estimated 329,000 people are diagnosed with Lyme disease each year in the United States. Typical symptoms include fever, headache, fatigue and a bullseye rash at the site of a tick bite.
People call Lyme disease “The Great Imitator” because it mimics a number of other chronic diseases. The disease can also come with many co-infections.
The Minnesota Department of Health has documented an increasing trend in Lyme disease and other tickborne diseases as the blacklegged tick has expanded its territory, moving more north and west across Minnesota in areas that were formerly considered to be lower risk with no prior detectable populations of ticks before.
The agency says the number of Lyme cases has jumped 142 percent in the past two decades in Minnesota.
Last year, researchers at Mayo Clinic discovered a new species of bacteria (Borrelia mayonii) that causes Lyme disease in people. Until then, Borrelia burgdorferi was the only species believed to cause Lyme disease in North America.
“I’LL DO ANYTHING TO FEEL BETTER”
Schuster said how her family contracted the disease is still unknown, but the family long lived in the deep woods near Becker, Minnesota.
“Ticks were very prevalent where we lived, we were constantly pulling ticks off of us, whether we had a bullseye rash, I can’t really recall,” said Schuster.
The CDC reports that between 70 to 80 percent of those included in its surveillance system report a bullseye rash. Some tickborne disease researchers estimate a lower number, anywhere from 25 to 50 percent of people who don’t get the rash.
The International Lyme and Associated Disease Society’s research cites 50-60 percent of patients recall a tick bite, and the organization reports a rash is reported in 35-60 percent of patients.
Schuster said after years of symptoms – endless fatigue, weight loss, excruciating pain, headaches, numbness, joint pain - she sought help from more than 20 doctors, including six trips to Mayo Clinic.
Schuster said multiple blood tests for Lyme disease brought negative results, until 2015, when a test from a California specialty lab brought a positive diagnosis.
“I am very ill, nobody recognizes it, doctors don’t even, so it’s a tough to be in the middle of that controversy, it’s disheartening, it hurts, because you don’t know which way to go,” said Schuster.
Schuster said she and her children are being treated for chronic Lyme disease, which has lasting symptoms that didn’t respond to initial antibiotic treatment.
The CDC and medical community remain divided over the accuracy of Lyme disease tests. The CDC doesn’t recognize the chronic form of the disease, and says the accuracy of the Lyme disease testing depends upon the stage of disease.
Schuster said as a result, her medical insurance no longer covers their medications for chronic treatment.
The family spends $2,500 on prescriptions every month, a cost that forced the family to downsize to a smaller home in Monticello just to afford the medications.
“I’ll do anything to feel better," Schuster said. "Years ago, you told me I was going to put a pill down my throat, I never was a pill taker, but we have to if we want a life, and that is what we are looking for, is our future. Someday, it will come back."
TRACKING THE TICK
At the Minnesota Department of Health, epidemiologist David Neitzel is tracking the expansion of the blacklegged tick across the state, trying to pinpoint the high-risk areas for tickborne disease transmission across the state.
At a site in Anoka County, he dragged a cloth across thick underbrush in a forested floor, and found the first clue Minnesota has entered the height of tick season.
“Bingo,” said Neitzel, a supervisor with the Vectorborne Diseases Unit. “Got one, here is a nymph, first nymph of the year.”
He unzipped a fanny pack, embroidered with the words, “Tick Boss," and put a tick nymph into a vial to bring back to his lab for disease testing.
“What this is an indication of is the highest risk time of year, because it’s these nymphs that do most of the disease transmission, look how little this thing is,” said Neitzel.
Neitzel said one in five of these poppy seed-sized ticks carry Lyme disease. They're small they can stay attached for several days, transmitting disease.
Neitzel leads the agency’s research, documenting the 142-percent jump in Lyme disease cases over the past two decades. From 1996-2005, MDH tracked a median number of 464 cases per year, compared to range 2006-2015, with a median of 1,121 cases per year.
“We usually have 1,000-1,400 confirmed cases reported every year and several hundred probable cases on top of that,” said Neitzel.
The reason behind the spread of the blacklegged tick across Minnesota and the US is still unclear, but Neitzel said factors like warmer winters, which bring a longer season for ticks, are being considered, along with populations of animals ticks feed on, like white tailed deer and white footed mice.
“White footed mice and chipmunks are what the immature ticks feed on, and that is where they pick up the Lyme disease bacteria and other disease organisms,” said Neitzel.
“It’s also called the reservoir for the disease agent – without the white footed mouse around, tickborne diseases would be a lot less common. There is not good monitoring of white footed mice across the nation. It’s hard to predict tick populations based on mouse population but in general where you have a lot of mice, it makes it easier for the ticks to survive, more likely to find something to feed on,” Neitzel added.
At the University of Minnesota, Dr. Jon Oliver, a public health entomologist and assistant professor at the School of Public Health Division of Environmental Health Sciences specializing in tickborne diseases, said the expansion of the blacklegged tick is a nationwide trend.
“Probably it’s a combination of factors including warming winters, changing host animal distribution, changing land use. It’s a multi-factorial issue. Like colony collapse disorder with the bees, with so many factors part of the problem, it’s hard to separate out a single factor,” said Oliver.
Oliver focuses on the interaction of tickborne bacteria within the tick, and said more funding is needed to research the diseases, many newly emerging.
“Lyme is the real giant amongst tickborne diseases in the US," Oliver said. "It’s by far more common than all the other tickborne diseases put together. It is a very common disease, especially when you consider there are at least 300,000 cases per year. That puts it up into the top five reportable communicable diseases in the US."
MINNESOTA IS ON THE MAP
The Schuster family knows they do not walk alone in their battle with Lyme disease. They joined hundreds of Minnesotans impacted by Lyme disease in the state’s first Lyme Awareness Minnesota weekend at the Mall of America in early May, which through a gala and walk, raised more than $130,000 to fund research into the disease.
The event drew Ally Hilfiger, daughter of fashion designer Tommy Hilfiger, who wrote a book called "Bite Me," documenting her struggle with Lyme disease.
“Minnesota is finally on the map for Lyme disease,” said Schuster.
Dr. Elizabeth Maloney of Wyoming, Minnesota, attended, calling for more evidence-based research and accurate testing for her patients. She spends time educating fellow physicians about Lyme disease, a disease she says is in the “gray zone."
“Right now most physicians don’t understand how complex the bacteria are that we are fighting and they don’t understand how it integrates in our bodies in a way that makes it difficult to cure," Maloney said. "The currently available testing is a real disservice to patients and their physicians because they are so often inaccurate."
Dr. Maloney leads the Partnership for Tick-Borne Diseases Education.
Dr. Elena Frid, a New York-based autoimmune neurologist specializing in Lyme, also attended the Lyme Awareness Minnesota event and said her patients taught her about Lyme disease when she started seeing an odd presentation of neurologic patients with Lyme.
“You have inflammation, infection, and an autoimmune process in the brain. It can cause psychiatric symptoms, it can cause neurodegenerative symptoms like MS, Alzheimer’s, Parkinson’s type symptoms, ALS and beyond,” said Dr. Frid.
“It’s not just one infection, that’s the takeaway point,” she added. “It’s a very complex organism that continues changing in your body and changing our body and so we are kind of playing catch up with it, and of course we need more research and funding from the government and privately so we can move this disease forward and cure it.”
ONE DAY AT A TIME
After prolonged treatment, Schuster said her son Jack is greatly improving, while she and her daughter still face many setbacks.
Schuster said another challenge lies in her daughter Alyssa, who has the most severe Lyme disease complications and also has autism, which exacerbates some of her symptoms.
“It makes it hard for me to cope with it and I complain a lot more than I really should, but when I see my Mom go through it, it’s a lot harder than when I see myself go through it,” said Alyssa Schuster. “If any one of us three were to have it still, I would want it to be me, and I wouldn’t want them do deal with their suffering anymore.”
The Schuster family is speaking out to not only put their disease in the limelight, but to provide hope to others currently seeking diagnosis or treatment.
For Joan, days still bring insurmountable pain, but tomorrow is a battle her family can't afford to lose.
“When are we going to be able to be the family we used to be?” said Schuster. “I always say, we just take one day at a time. One day. We just live in the moment.”
Project Lyme offers “4 Steps in the Fight Against Ticks”
Dress Appropriately. Wear light-colored clothing, long-sleeved shirt and pants. Tuck shirt into pants, pant legs into socks or wear tall boots with pants tucked in.
Spray it. Spray DEET (at least 20 percent DEET) repellent on skin; Spray permethrin on clothing.
Watch it. Know your surroundings. Avoid tall grasses and humid, wooded, leaf-littered areas. Stay on trails. Do not sit on logs. Ticks are not only in the woods, they are in your backyard and in parks.
Tick check it. Check for ticks after being outdoors, preferably in the shower. Check side of body, groin area, around headband, back of neck, tight places (like belt area, watch strap, underneath hairline).