Benefit aims to help Grandin, N.D., family battling Lyme disease
GRANDIN, N.D. -- Liz Thorsrud has not felt well for most of her life and now she's afraid that what has been ailing her has spread to her husband and their four children.
After decades of feeling sick, Thorsrud said she can now put a name to her affliction -- Lyme disease.
"I believe I've had it for 30 years. I believe I gave it to my husband and children," said Thorsrud, acknowledging her theory doesn't jibe with the mainstream medical view that the bacteria that causes Lyme disease is transmitted exclusively by bites from ticks.
After battling health issues off and on for much of her life, Thorsrud, who lives in rural Grandin with her family, said she began searching in earnest early last year for the source for her problems when the symptoms worsened.
The answer began forming after a friend asked whether Lyme disease had ever been explored, she said.
Thorsrud said she was tested, but it came back negative.
On a hunch something might have been missed, she was tested again and it came back positive.
Since then, Thorsrud said her husband, Nolan, as well as their daughter and three sons, ages 4 to 10, have all tested positive for Lyme disease.
"None of us look healthy," Thorsrud said. While her husband has symptoms that are not as pronounced as her own, he still has joint pain and often feels tired.
Lyme disease is typically treated with a two- to four-week course of antibiotics.
Thorsrud, however, is convinced that such a regimen may not be enough to eradicate the infection in some cases. She believes that once a chronic condition sets in, long-term antibiotic treatment may be necessary.
That view, which is shared by some around the country, including some physicians treating patients with chronic symptoms, is contrary with the view of the mainstream medical community, including the national Centers for Disease Control and Prevention.
The CDC states on its website that studies show patients who receive prolonged treatment with antibiotics fare no better than those treated with a placebo.
The CDC also warns that long-term antibiotic treatment for Lyme disease has been associated with serious complications.
In the case of her family, Thorsrud said they have so far refrained from antibiotics altogether. Instead, they are pursuing a course of alternative treatments aimed at boosting their immune systems, including herbal remedies and a diet focused on healthy, nonprocessed foods.
Thorsrud said one reason she is staying away from antibiotics is she has experienced severe complications after taking them in the past.
"It (the antibiotic route) might happen, but I just don't want to do it right now," Thorsrud said.
She said many people are struggling with the same Lyme disease issues as she and her family.
"It's getting to be a larger problem that no one is really shedding a light on," said Thorsrud, who helped organize a Lyme disease support group that meets from 7 to 8:30 p.m. the second Thursday of each month at the Comfort Suites, 1415 35th St. S. in Fargo.
Timothy Bischof, an infectious disease physician with Sanford Health, said Lyme disease is spread by the bite of deer ticks and causes flu-like symptoms such as fevers and chills, as well headaches and joint and muscle aches and pains.
In 60 to 70 percent of cases, there is a telltale "bulls-eye" rash at the site of the tick bite.
Bischof said anytime someone experiences flu-like symptoms during the warm months of May through September or October, it might be wise for them to get checked out by a doctor.
To avoid tick bites altogether, he said it's a good idea for people to check themselves closely after outdoor activities in the spring and summer, and advises using insect repellent containing DEET.
Bischof said a tick must be attached to someone for at least 36 hours for the bacteria that causes Lyme disease to be transmitted.
"If you take the tick off right away, the chance of getting Lyme disease is essentially nil," he said.
The Thorsruds are members of Riverside Evangelical Church in Mayville, which is hosting a benefit for the family from noon to 2 p.m. Sunday.
The event will include a taco bar and silent auction.
A benefit fund for the Thorsruds has been set up at the Goose River Bank, 515 W. Caledonia Ave., Hillsboro.
If you go
What: Benefit event for the Thorsrud family of Grandin, N.D.
When: noon to 2 p.m. Sunday
Where: Riverside Evangelical Church, Highway 200, Mayville, N.D.
Long-term Lyme disease information
It is not uncommon for patients treated for Lyme disease with a recommended two- to four-week course of antibiotics to have lingering symptoms of fatigue, pain, or joint and muscle aches, according to the Centers for Disease Control and Prevention.
In a small percentage of cases, such symptoms can last for more than six months, the agency said on its website.
Sometimes called "chronic Lyme disease," the CDC said the condition is also called "Post-Treatment Lyme Disease Syndrome."
The exact cause of PTLDS is not known, the CDC says, but most medical experts feel the lingering symptoms are caused by residual damage to tissues and the immune system that occurred during the infection. Some health care providers also tell patients the symptoms are caused by persistent infection by bacteria. Clinical studies are ongoing to determine the cause of PTLDS, the CDC said.