Devon Holstad
Guest Contributor

Every day millions of Minnesotans venture outdoors, whether it be to hunt, work in the garden, or simply lounge in the summer sun.

Unbeknownst to most, however, is the danger that even just a stroll through the yard possesses.

Hiding among the grass and trees is the tiniest of threats.

The deer tick, which can be smaller than a pinhead, can carry many detrimental diseases, the most notable being Lyme Disease.

While not all victims suffer the wide-ranging physical effects of Lyme Disease, the bacterial infection resulting from a tick bite can be long lasting and sometimes disabling.

Two local women, Cindy Malone of Columbus and Nancy Nelson of Forest Lake, have experienced life-changing journeys with Lyme Disease that highlight the controversy involved with the diagnosis and treatment of the disease.

The diagnosis

It took eight years and numerous visits to the doctor and different specialists for Cindy Malone to receive a Lyme Disease diagnosis.

Many different doctors and specialists missed the Lyme diagnosis, including two ELISA tests (the standard Lyme test) which came out negative.

And if it hadn’t been for a letter in the newspaper pointing out the problems in the Lyme diagnosis process from Dr. Betty Maloney, who herself has Lyme Disease, it may have taken longer.

“When it goes undetected, undiagnosed, and untreated that long it really makes a mess,” said Malone’s husband, Paul.

For Malone, who saw the first signs of trouble when she started to limp in 1998, life has changed dramatically.

“I didn’t want to quit,” she said, explaining that she continued to work until July of 2006 even though she had to crawl to her car because she could no longer walk.

“I can’t do very many normal things,” she said. Malone is confident she will one day walk again, but admits, “it won’t be overnight.”

Said her husband, “The disheartening thing about all of this is the controversy. The diagnosis is controversial, the tests are controversial, the treatment is controversial; there’s not enough information about Lyme, people just don’t know about it.”

The story is similar for Nelson, who had Lyme Disease for 24 years before finally being diagnosed last February.

She recalls the summer when she got a rash from a tick bite, but due to the lack of information on Lyme, no one knew what to look for.

Nelson went through years of symptoms, including a constant numbness of her feet and sometimes going two to three weeks without sleep. “I just tried to function,” she said.

After about 15 years of no improvement, Nelson started to do her own research and came to the conclusion that she had Lyme Disease.

No one believed her and she was told she had things such as depression, chronic fatigue, and fibromyalgia, which shares common symptoms with Lyme Disease.

Malone wouldn’t give up, however, and went to great lengths to convince doctors she was right, including having MRIs of the brain and even a spinal tap. With no results, Nelson admits that she was getting worn out. “It’s a terrible disease. I was prepared to die.”

After taking the Western Blot test, which came up negative, Nelson decided to try one last resort. She found a company in California, iGenics, which specializes in Lyme Disease, and ordered a test kit.

The tests came back positive.

Had it not been for that test kit, Nelson doesn’t know how long she would have gone without a diagnosis.

“The testing that clinics use are like trying to catch minnows with chicken wire,” she said. For Nelson, who used to jog 8 miles a day, dealing with Lyme Disease has been tough, adding that she has lost numerous friends throughout the process.

Understanding the disease

Neither Malone or Nelson feel any resentment toward any of the doctors or specialists who missed the Lyme Disease diagnosis, but instead point to a broad lack of understanding when it comes to Lyme Disease.

This sentiment is echoed by Dr. Maloney, who has been trying to help others understand what Lyme Disease is and how to deal with it.

After spending over 2 and a half years before being diagnosed, Maloney had one question. “How did so many good physicians who had the best intentions miss this diagnosis?”

She points out that there are many misunderstandings about Lyme Disease, such as the bulls eye rash.

While the bulls eye is a tell-tale sign of a tick bite, it is not the most common rash. Furthermore, one third of Lyme patients won’t ever have a rash.

She continued, “(Doctors) are going to miss a lot of Lyme because it can look like so many other things. It is an excellent imitator.”

Maloney mentions the excepted standard testing of potential Lyme patients as one of the problem areas.

One issue is that the ELISA test detects antibiotics, not bacteria, so if the patient is tested too early or too late the test will come back negative.

Also, “all antibody tests assume the patient’s immune system is working normally,” said Maloney. Another large issue with Lyme Disease is that there is no test or cure, so doctors are wary of treating everyone who may or may not have the disease but are feeling well.

The biggest issue, however, is simply a lack of knowledge.

“Most physicians want to help people but they have inadequate knowledge,” said Maloney. She added, “Rather than beat up those who missed (the diagnoses), we need to find out how to fix it.”

The debate about Lyme Disease is far from over, and Maloney admits that “it’s not such a cut and dry problem,” and that “no one person can do everything.”

Unfortunately, Malone, Nelson, and Maloney’s stories are not unique.

According to the Center for Disease Control, there were an average of 17.9 cases of Lyme Disease for every 100,000 Minnesotans from 1993-2005.

And in a state like Minnesota, where seemingly everyone is introduced to the great outdoors once they learn to walk, there are many avenues for one to bitten by a tick without even the slightest knowledge.

And while strides are being made in the medical field to deepen the understanding of how to treat Lyme Disease, the easiest way to prevent it is to be aware of the risk when the public is outside and take the necessary precautions.

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