by Heather Reinhart
When Kristi (Modrow) Hellen was growing up in Zimmerman, she played in her family’s wooded lot and often spent time at a cabin in Wisconsin. She was outdoors and in wooded areas all the time, and to her, getting bitten by ticks was just something that happened. The 1997 graduate of Elk River High School was a dancer and continued dancing through college. It was a passion of hers that ended too soon.
“It was one of the first things I had to let go in life,” she said.
Hellen suffered from occasional migraines growing up but they went away when she got older. In college, the migraines came back and were so severe that she sought medical help and nothing was found.
Over the past 19 years, Hellen’s symptoms have slowly worsened. She has been diagnosed with chronic fatigue syndrome, depression and fibromyalgia. It wasn’t until November 2016 that Hellen was finally accurately diagnosed with chronic Lyme disease and two co-infections of Babesia and Mycoplasma. Previously, none of Hellen’s other doctors had even mentioned the possibility of Lyme disease, but she now knows it has been the cause of all her other illnesses.
One nasty bite
Lyme disease is spread through tick bites and is an infection that can involve all organs of the human body, the brain, the central nervous system and the musculoskeletal system. Minnesota is a high-risk state for Lyme disease and consistently ranks among the top 10 states for reported cases. In 2015, the Centers for Disease Control and Prevention reported that 95 percent of confirmed Lyme disease cases came from just 14 states. Minnesota was sixth on the list. Ticks can survive Minnesota winters and are active whenever temperatures reach 38 degrees.
Elk River’s Rick Dahlman, a former forester and currently a member of the Minnesota Lyme Association Speakers Bureau, was infected with Lyme disease in 1987 during a bad fire year. He spent 4 1/2 years taking aggressive antibiotics with no luck. Dahlman suffers from chronic fatigue at times and has had occasions of severe shoulder pain requiring physical therapy. Three of the vertebra in his neck have been fused together, and when he was first diagnosed with Lyme, he suffered from a severe headache that lasted for two years. He said that of the 30 years he has been infected, 12 were just miserable.
“There’s a lack of good information for what to do,” he said, adding that it’s very difficult to find a doctor who specializes in Lyme disease and there is a lot of skepticism in the medical community.
One of the biggest obstacles is that the two main associations for Lyme disease – the International Lyme and Associated Diseases Society and the Infectious Diseases Society of America – disagree on treatment guidelines for Lyme, which Dahlman said has impacted the ability for Lyme research to move forward.
“Where is the reliable information?” Dahlman said. “When you have people that can’t take care of their families because of this, they get desperate.”
Heather Farrier, a former Big Lake resident now living in Minnetonka, also contracted Lyme disease as a child and knows all
too well how desperate one can get when Lyme hits hard. At age 12, she became one of the youngest people to be diagnosed with fibromyalgia. A random acne medication she used as a teenager temporarily brought a halt to her symptoms, but any trauma to her body has brought it back.
Farrier, who will turn 40 this August, woke up in September 2011 with incredible spine pain. She has since had three major spine surgeries and has gotten sicker and sicker every time. She suffers from memory loss and forgets simple things. She’s left the bathtub running and the stove on. In May 2014, her legs just stopped working and she had to start using a walker.
“It affected every one of my senses,” she said, adding that the bacteria had gotten into her brain. “I didn’t want to live. I was in so much pain, I couldn’t function.”
Farrier, who is married and has a child, has tried many different treatments, including bee venom therapy, and recently took a trip to Mexico to see if doctors there could help.
“I really was at the end of my rope,” she said.
Farrier spent three weeks at Clinica De La Luz, which is located four hours south of El Passo, Texas. There, she immersed herself into holistic therapy that detoxified her body and restored her immune system.
“I was skeptical going in, but I didn’t have much to lose,” Farrier said.
She said her spine pain was in the 7-10 range (on a 1-10 scale) when she left for the treatment, and when she returned it was at a 4.
“It was the best decision of my life,” she said. “This is the best I’ve felt in five years. I’m doing good. Not great, but I’m getting there, and I have a plan. I feel like I have the tools now to heal my body.”
The treatment was done in Mexico because it is not approved by the FDA. The treatment included sea water, vitamins and minerals. She is now on less medication and has less pain.
Farrier hopes to continue to get better and would like to lead a slow and peaceful life where she can function and be a mom and a wife.
“This disease has taken everything from me,” she said. “It’s a lonely and isolating disease.”
Hope on the horizon
Hellen has also experienced everything the debilitating disease has to offer. Her condition grew worse during her years at Winona State University. She started getting easily fatigued and went through a three-month period of pain in her hands that was so bad she was unable to hold a pencil. She struggled with chronic fatigue and pain all through college, but pushed herself to become a teacher and mentor.
“Everything just got worse every year in college,” she said. “It’s a miracle I graduated.”
Hellen’s medical issues eventually left her unable to care for herself and she had to move in with her parents 12 years ago. After seven years, she was able to slowly start a dyslexia tutoring business and met her now-husband Matt. But her symptoms have come back and worsened and she is now 95 percent bedridden.
Hellen has been researching treatments and doctors for years and has decided to give stem cell therapy a try. She will be going to the Infusio Clinic in California on Aug. 26 where stem cells will be taken from her adipose tissue by a chronic Lyme disease expert with over 20 years of experience. The stem cells are able to turn into any other type of cell and will allow the body to fight infection, heal damaged cells, tissues, organs and more. Hellen is optimistic about the treatment as 80 percent of this doctor’s patients become 70-100 percent symptom-free and return to living a normal, energetic life.
“I’m excited because it’s very promising,” she said. “By the one-year mark most people are back to living a normal life.”
The cost of this Stem Cell Therapy in California is $25,000 and Kristi and Matt have been fundraising to try to cover the cost, as well as travel expenses and two weeks of lodging, plus a follow-up trip and testing for Matt as well, because Lyme disease can be sexually transmitted. Their goal is to raise $35,350. To learn more about her story, visit https://www.youcaring.com/kristihellen-759085.
“I can’t wait to feel healthy again,” said Hellen, who has battled chronic pain and fatigue for 19 years. “I honestly can’t remember what it feels like.”
Hellen said that if the treatment is a success, she wants to be able to help other people with chronic Lyme disease, as her experience isn’t all that rare.
Lyme everywhere, poor testing
The Minnesota Department of Health shares the number of reported cases of Lyme disease in the state around 1,200. But this number is based on the epidemiologic definition for a “reportable” case, which is designed to assure accurate statistical tracking of disease trends and not actual treated cases. The CDC has said that the new estimates suggest that the total number of people diagnosed with Lyme disease is roughly 10 times higher than the reported number. This means that there could be roughly 12,000 actual cases of Lyme disease in Minnesota each year and 300,000 in the United States.
Like Farrier, Hellen also wants to be able to enjoy the simple things in life again. She wants to be able to go on dates with her husband and they would love to start a family. Her advice to others is that if you have any symptoms at all, get tested, and know that your test results might come up negative even if you do have the disease, which is what happened to Farrier.
Hellen and Dahlman both said there are a lot of Lyme disease organizations working to promote better testing, as basic testing has been proven to be less than 60 percent accurate.
“Current testing is abysmally bad,” Dahlman said. “It’s terrible.”
Dahlman said that many in the medical field are not aware of the inaccuracy in Lyme testing and do not have proper knowledge about the disease to be able to diagnose it. The Minnesota Lyme Association is working for fix that by offering classes for continuing education credits for doctors who want more in-depth training about Lyme. They even offer scholarships to help pay for the classes.
Lyme disease in general remains a bit of an unknown and scientists and researchers are still working to figure it out.
“The biggest misconception is that Lyme disease is a single disease,” said Thomas Grier, a researcher and director of pathology studies at the Dr. Paul H. Duray Pathology Research Fellowship. “For decades, we were told only (the bacterium) Borrelia burgdorferi causes Lyme disease, but actually 12 species cause Lyme, and more species are being put in the Lyme family every year.”
Grier also suffers from Lyme disease and has been researching it for years. He is currently studying the brains of people who have died from chronic illnesses to try and learn more about it. Through brain autopsies, the goal is to determine the true involvement of certain bacteria in the pathogenisis of Alzheimer’s, multiple sclerosis, Lewy body dementia, and other undefined neurological brain disorders.
Unfortunately, Lyme disease isn’t the only disease that ticks can carry. Others include human anaplasmosis, Babesiosis, Rocky Mountain spotted fever, ehrlichiosis, Powassan virus, southern tick-associated rash illness, and tularemia.
Dahlman said that those who spend time in areas that are prone to ticks should use sprays that contain at least 30 percent DEET on your skin and use a chemical called permethrin on their clothing. Permethrin is an insecticide that bonds to fabric and once dry, won’t transfer onto skin. It is recommended that clothing, sleeping bags, tents and other gear be sprayed with permethrin before entering a tick habitat. Depending on the product, it lasts two to six weeks and through multiple washings.
Lyme disease has been found throughout the world and often has similar symptoms as other diseases, meaning it is often misdiagnosed and not properly treated, which was the case with Hellen and Farrier. Early Lyme disease can be treated with antibiotics and the overall cure rate is high. Late Lyme disease is much more difficult to treat, and while most patients improve with antibiotic therapy, cure rates are much lower.
Grier said that new evidence from John’s Hopkins University confirms what Lyme doctors already knew: Lyme might be incurable, and powerful antibiotic combinations are needed to keep it in check.
Dahlman, a member of the Minnesota Lyme Association Speakers Bureau, often gives presentations about Lyme disease to groups and organizations. If you’d like to have him speak to your group, call him at 763-274-9820 or email [email protected]
More information can also be found online at mnlyme.org.
•Perform frequent, thorough tick checks on both yourself and your clothing and outdoor gear before bringing items into the house.
•Wear light-colored clothes.
•Tuck pants into socks.
•Put clothes in dryer for 30 minutes to kill ticks.
•Use DEET-containing products (30 percent or higher) for skin.
•Use permethrin-containing products for clothing.
•Consider buying clothing that protects against ticks.
If you are bitten
•Do not put anything on the tick, as it may make it harder to grasp.
•Remove the tick by grabbing it with tweezers as close to the skin as possible and pulling it straight out. Do not twist or pull at an angle.
•Wash the wound with soap and water immediately.
•Save the tick in a resealable container with a moist cotton ball or paper towel so they can be identified and examined by your doctor if needed.
•If you begin to experience symptoms of Lyme disease, see your doctor.
•Some suggest seeing a doctor right away after a tick bite, as early antibiotics may reduce the risk of Lyme. Contact your doctor to discuss this strategy.
Symptoms of Lyme disease
•Rash (less than 70 percent of cases)
•Stiff, aching neck
•Headache, new onset migraine
•Joint pain or swelling
•Muscle pain or twitching
•Dizziness, ringing in ears, light or sound sensitivity
•Palpitations, chest pain
•Cognitive problems, difficulty concentrating
•Depression, mood swings
•Poor short-term memory
•Abdominal pain, nausea, diarrhea
•Shortness of breath
•Tingling, burning, shooting pains, numbness