GREENWOOD TWP- A tiny tick, a bulls-eye rash or maybe not, a bewildering web of symptoms— the story of Lyme disease, and a growing list of other tick-borne illnesses was a topic that attracted a crowd of well over 50 area residents to the Greenwood Town Hall last Thursday.
A talk and panel discussion, sponsored by the Lake Vermilion Cultural Center, featured Scenic Rivers’ Dr. Josie Norberg-Lopez, along with a panel of three adults who have all struggled with complications from the syndrome.
Norberg-Lopez gave a basic introduction to the symptoms and treatment options for Lyme disease. While the disease is not carried by our common wood tick, about 20 percent of smaller black-legged or “deer” ticks are infected with the parasite that causes Lyme disease.
“Lyme disease is caused by an actual parasite,” she said, “and it does require antibiotics.”
“The illness is very interesting,” she said. “It is not a straightforward infection.”
The illness can present itself in different phases. Only three-quarters of infected people (though some literature pegs this fraction much lower) develop the tell-tale bulls-eye rash. Early symptoms include fever, chills, headache, muscle and joint pain, and swollen lymph nodes. The rash can take a few different forms, but usually includes a red middle with a red ring around it. The rash can be as large as a foot in diameter, and is not painful or itchy.
“If we catch Lyme at this phase it is easy to treat,” she said. “It can be confused with cellulitis, but both respond to antibiotics.”
But some people do not develop the rash, or the rash develops on their scalp or back and is not noticed.
Left untreated, the Lyme spirochete (type of bacteria) can cause a large number of symptoms, often confused with other serious illnesses. The symptoms can include severe headaches, neck stiffness, infection of the brain or spinal cord tissue, swollen joints, Bell’s palsy, muscle and tendon pain, heart issues, dizziness, shortness of breath, and issues that mimic meningitis and affect brain and memory functions.
Diagnosis can be complicated by the fact that the most common blood test used is not always accurate, and there are a number of other tick-borne illnesses that can coincide with Lyme, not all of which are easily detected.
There is also a small segment of Lyme patients who get treated promptly, but go on to develop additional and severe symptoms, which are thought to be auto-immune related.
“The infection can trigger an immune response that attacks joints and other parts of your body,” she said.
While conventional medical advice has been that a tick must be attached for 36 hours to transmit the Lyme spirochete, other tick-borne illnesses can be transmitted more quickly. In addition, if the tick in question has recently fed on an infected host, transmission can be within hours of attachment, according to Gina Empey, of Cambridge, who was instrumental in forming the Minnesota Lyme Association and served as a panelist at last week’s presentation.
Norberg-Lopez said that diagnosis and treatment of Lyme is often done after a clinical analysis (that is, examination of the patient and symptoms), rather than simply on blood testing results. She noted that follow-up was essential, in case longer-term problems emerge. She said that in her experience in this area, patients treated promptly have not gone on to experience long-term effects.
“It is better to be safe than sorry,” she said. “Even if we don’t give you antibiotics right away, we will be watching you very closely for a few months.”
“The cases we worry about,” she added, “are where it has been going on for months without antibiotics.”
Three panelists talked about their own personal experiences with Lyme disease.
Empey said she was bitten by a deer tick in 2009, but didn’t go in to get treatment right away because she didn’t develop a rash. But ten days later, the rash appeared. It turned out she had Lyme disease, plus three other tick-borne illnesses– bartonella, babesia, and mycoplasma. She said her first three blood tests (Elisa) were negative, but a fourth, more accurate, Western Blot test was positive.
“This can ruin your life,” she said. “My wait-and-see approach did not work.”
Empey has been treated for the past eight years, and while currently doing fine, still has recurring symptoms and requires frequent courses of antibiotics and other medications. After she was diagnosed, she realized that her husband, who the doctors had diagnosed with fibromyalgia, also had Lyme disease, and he also is doing better after treatment.
Terese Elhard, who now works part-time at Vermilion Park Inn, also ended up infected with multiple tick-borne diseases, which had a lasting impact on her life. She said the network of other patients she connected with through the Minnesota Lyme Association has been crucial for her ongoing recovery.
Mike Keenan, who grew up in Tower-Soudan, and recently moved back north, was treated two weeks after a tick bite (after a rash developed), but kept having symptoms after his initial treatment. He ended up with Bell’s palsy, heart issues, and an infection that moved into his brain that was similar to Mad Hatter’s Disease, which is caused by mercury poisoning.
“They thought I had MS (multiple sclerosis), not Lyme,” he said.
“The Lyme disease bug can hide from antibiotics,” he said.
With chronic Lyme disease, it’s not uncommon for sufferers to experience problems that re-occur monthly, or at regular intervals. The spirochete can hide in the body, and protect itself by forming cysts or films that protect it from the antibiotic treatments. The bacteria replicates itself on a predictable basis, and symptoms flare up when the numbers of bacteria in the body increase.
The take-away from the talk was two-fold.
First, the importance of prevention. Norberg-Lopez stressed being vigilant about tick checks, especially for children. “Check your body every day,” she said, “and the scalp is a common place for tick bites.” She said it is also important to keep pets tick-free, since they can bring infected ticks into the house.
“Fall is a high season for ticks,” she noted.
The importance of early treatment is the other key message, and follow-through, from a practitioner who is familiar with Lyme disease and other tick-borne illnesses and will take a clinical approach to the problem.
The LVCC plans a second discussion on the issue of Lyme disease next spring. There were a handful of participants at the session who had been treated for Lyme disease, including a Greenwood resident who was treated just this summer. If enough interest is shown, a local Lyme disease support group may form.
For more information and resources, visit the website http://mnlyme.org/.