Cautionary Tale of Lyme Disease Dangers
By Susan Thompson
It’s tick season in Iowa. In recent years, Iowa has seen a surge in tick-borne illnesses, with Lyme disease topping the list. The Iowa Department of Public Health is warning residents to take preventive measures now, since most cases in Iowa occur in June and July.
In 2017, 254 cases of Lyme disease were reported to Iowa public health officials.
That’s up from the 232 confirmed cases reported in 2016 and nearly triples the 87 cases reported in 2010.
The disease is found throughout the United States, plus more than 60 other countries. The Centers for Disease Control and Prevention estimate 300,000 people are diagnosed with Lyme disease in the United States every year, 1.5 times the number of women diagnosed with breast cancer.
Most people get Lyme from the bite of the nymphal, or immature, form of a deer tick. Nymphs are about the size of a poppy seed. Because they are so tiny and their bite is painless, many people do not realize they have been bitten.
Once a tick has attached, it may feed for several days. Lyme disease is caused by a corkscrew-shaped bacterium called Borrelia burgdorferi. If not diagnosed and treated early, the bacterium can spread and may go into hiding in different parts of the body.
At first, Lyme disease results in a rash, fevers and chills. If treated early with antibiotics, most people recover without further treatment.
Lyme becomes more debilitating and harder to treat the longer a person has been infected. Weeks, months or even years later, patients may develop problems with the brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and skin. This condition is referred to as Chronic Lyme disease.
Dee Eckley and her husband Doug have lived full-time at Lake Panorama since 2013. Dee, a registered nurse, knows all too well about Chronic Lyme disease. She watched as her sister battled the disease for nearly three years before her death in February 2017.
In an effort to help others who might be infected with Lyme disease, Eckley agreed to help tell her sister’s story by providing the following timeline.
Elise Huffman and her husband Dave lived in Boone. They often spent their summer weekends camping, both near their home in central Iowa, and also in northeast Iowa.
In October 2014, Elise was visiting another sister in Chicago, who noticed Elise had a bit of a foot drop while walking. This was the beginning of her journey through a fragmented Iowa medical community on the diagnosis and treatment for Lyme disease.
Her first stop was a local physician, who set her up with some physical therapy. Next she saw a doctor in Ames who referred her to a Des Moines neurologist. She was diagnosed with a peroneal nerve problem, and encouraged to continue with physical therapy.
Elise’s symptoms progressed up her leg with increasing dysfunction and pain. She also described an intermittent rash and hip pain, which no medical professional seemed interested in hearing about and did not consider to be of any consequence.
One day, while walking to her car at work, a woman stopped and asked about her condition. As Elise described her lower leg situation, rash, hip pain and general fatigue, the woman said she had the same symptoms and had been diagnosed with Lyme disease.
Elise and her husband began to investigate this possibility. Because of her insurance, her next stop was Iowa City. An extensive workup was completed with no answers. After much pleading, an infectious disease physician in Ames consented to prescribe three weeks of the appropriate antibiotic, as more testing and consulting could be done.
By May 2015, Elise had little stamina, required a cane for walking, had increasing pain, and progressive loss of function of both lower extremities. When there were long distances, she used a wheelchair.
Next was Mayo Clinic. Her insurance had to approve the visit, which caused a month’s delay. By now she required a wheelchair full-time. On their departure, they were told it was probably ALS. She was to come back in six months and if it had moved into her upper extremities, they would diagnose her with ALS.
Elise and her family left discouraged, hopeless, and disappointed. No one would listen to their interest in pursuing the idea of Lyme disease.
There are tests that can diagnose Lyme, some of which have false results. After much research, the family decided the Western Blot test would be the most conclusive. They independently obtained and completed the test through a lab in California, which cost $1,000 out-of-pocket. After weeks of waiting due to the lab’s backlog of such testing, Elise’s Western Blot came back positive for Lyme disease.
The family started a new journey to seek physicians out-of-state who specialized in treating Lyme. With the Western Blot results, they chose a physician in Wisconsin, and Elise was diagnosed with Lyme disease.
She began a large regimen of antibiotics and natural products to combat the Borrelia burgdorferi organism. All of this needed to be paid out-of-pocket as insurance denied all claims. Elise was forced to go on sick leave, as she was no longer physically able to work.
Surprisingly, the family located a physician in Iowa who would be a two-hour drive rather than a six-hour drive away, plus maybe insurance would pay claims. So they transferred her care.
On Elise’s 59th birthday, she received a letter from this Iowa doctor, who said the Iowa Board of Medicine had banned her from treating patients with Lyme disease. She had two weeks left of her medications. Back to the drawing board to find a physician to care for her and treat her disease.
Next was a trip to Missouri to meet with a physician who only treated patients with Lyme disease. It took six weeks to get in, was another six-hour drive, and all costs were out-of-pocket again.
At that visit, it was learned Elise had very high levels of metals in her system, which coat the Borrelia burgdorferi organism, making antibiotic therapy ineffective. She would need IV Celation therapy that would remove the metals, then she would be able to start IV antibiotic therapy.
No one in Iowa performs Celation therapy. The next choices were Omaha or Minnesota, rather than a six-hour weekly trip to Missouri. Minnesota was the choice and insurance covered part of the bills. The couple, plus a helper, made weekly trips to Minnesota, leaving early morning and getting home at dusk. For nine months, these weekly trips continued. Elise was totally dependent for all her activities of daily living, with her only motor skills coming from her shoulders.
In February 2017, Dee and her mother went to spend four hours with Elise on her 60th birthday. That evening, Elise was quite ill, admitted to their local hospital, and diagnosed with influenza A. The next day she was transferred to a Des Moines hospital, and the diagnosis of pneumonia was added. On February 17, 2017, Elise ended her battle with Chronic Lyme disease and was now free from pain.
Lyme Disease Symptoms
Those who are bitten by a tick and infected with Lyme disease sometimes see a rash appear around the site of the bite within a few days to a month. The rash will first look like a small, red bump, then expand until it begins to look like a bull’s-eye, with a red center and a red ring surrounding a clear area.
Individuals with that kind of rash, or with any flu-like symptoms within a month of having a tick bite, should contact their health care provider immediately.
However, many people with Lyme never knew they were bitten and never developed a rash. Dee Eckley says that was the case with Elise. Once her symptoms started to worsen, she tried to think about possible tick bites, and did remember an undetected tick bite on her leg behind her knee after a camping trip.
Because she couldn’t see the area, she never knew if she had the type of rash some people get. But she did have other rashes later, which is one of many symptoms of Lyme disease. Her other early symptoms included fatigue, joint aches, pain and insomnia.
Additional symptoms to watch for are fevers, headaches, dizziness, light sensitivity, facial palsy, heart palpitations, inflammation of the brain and spinal cord, problems with short term memory, numbness or tingling, and night sweats.
Iowa Law Change
In March 2017, then Iowa Governor Terry Branstad signed into law a bill to permit more aggressive treatment of Lyme disease than previously allowed by the Iowa Board of Medicine. The bill passed both houses of the Iowa Legislature unanimously.
During debate several lawmakers told personal stories of family members and others who had been unable to obtain adequate treatment for Lyme disease in Iowa, which forced Iowans to travel to doctors in Minnesota and Missouri. Earlier, the state Board of Medicine had disciplined at least two doctors for prescribing antibiotics for more than 30 days as treatment for Lyme disease.
During House debate on the bill, Representative Sandy Salmon of Janesville said these disciplinary actions “had the effect of quashing the willingness of Iowa medical providers to treat and even diagnose Lyme disease.”
This action was too late to help Elise Huffman.