Area man spreading word about often-misunderstood Lyme disease

By MARK WEBBER, for the Brown County Democrat

COLUMBUS — A disease may have already infected more than 5,600 Hoosiers, according to the Centers for Disease Control.

Until learning that he had contracted Lyme disease, Gary Poland spent six months worrying that he would die every time he fell asleep.

After first experiencing dizziness in 2014, the Columbus resident eventually felt incapable of eating, which caused him to lose 70 pounds in two months, Poland said.

When his family doctor couldn’t find anything wrong with him, Poland, 35, saw more than a dozen other physicians.

The first diagnosis he received was multiple sclerosis, an unpredictable and disabling disease of the central nervous system.

But after a few weeks, MS was ruled out.

Afterward, a different physician told Poland he may have amyotrophic lateral sclerosis, more commonly called Lou Gehrig’s Disease. ALS is a progressive degenerative disease that affects nerve cells in the brain and spinal cord.

New symptoms emerged that included neck and joint pain, as well as severe anxiety, Poland said.

“For months, I was wondering how much time I had left,” he said, as well as what his quality of life would be.

But after ALS was also ruled out, a physician suggested to Poland that his problems were “all in my head,” Poland said.

Refusing to accept his symptoms as psychosomatic, Poland began doing extensive research before he came upon a possible cause that made sense to him.

Lyme disease

In Indiana, the bacterial Lyme disease is spread through inflected black-legged ticks, often called deer ticks, according to the Centers for Disease Control and Prevention.“I live in a heavily-wooded area along the Bartholomew-Brown County line,” Poland said. “I was always hunting and fishing, so I’ve had many tick bites.”

But when Poland suggested Lyme disease to one of his physicians in early 2016, he was told the disease did not exist in Indiana, he said.

While many other physicians believed the same thing not too long ago, the Centers for Disease Control and Prevention now estimates that 5,632 Hoosiers have the disease, although only 704 cases have been confirmed.

There’s no evidence to suggest that more than one recent case originated in the Columbus area, said Link Fulp, the county’s director of environmental health.

“But one problem is that a number of people we’ve seen who have this illness have also been hiking in other areas of the country,” Fulp said. “Making a direct one-on-one connection is very difficult.”

Another reason that more cases have not been confirmed is that the bacteria can live in a body for several years with no symptoms “before it suddenly turns on like a light switch,” Poland said.

Diagnosis confusion

A much larger problem is that Lyme disease — discovered about 40 years ago — all too frequently is mistaken for something else, Poland said.Besides MS and ALS, Lyme disease has also been misdiagnosed as fibromyalgia, chronic fatigue syndrome or Parkinson’s disease, according to the Centers for Disease Control and Prevention.

The variable signs and symptoms of Lyme disease are nonspecific and often are found in other conditions, so diagnosis can be difficult, according to researchers at the Mayo Clinic.

What’s more, the ticks that transmit Lyme disease also can spread other diseases at the same time, the researchers said.

Misdiagnosis has been so common that it became a central theme for the critically acclaimed 2009 documentary film, “Under Our Skin: The Untold Story of Lyme Disease.”

If left untreated, Lyme disease can lead to severe long-term health issues — something Poland learned the hard way after waiting two years to get the right diagnosis, he said.

Poland, who has limited health insurance coverage, has to take 62 pills daily, including antibiotics and herbal supplements. The cost requires him to work two jobs, he said.

He’s also had to adopt a diet without grain or sugar that leaves him few options but to eat only store-bought fruits and vegetables, he said.

Although some friends and co-workers are compassionate and open to learning about his condition, “others act like I’m crazy and don’t know what I’m talking about,” Poland said. “They just don’t want to listen.”

With the encouragement he receives through support meetings held in Bloomington, however, Poland says he tries to remain hopeful that a cure will be discovered in his lifetime.

“Besides my family, that’s the only thing that keeps me going,” Poland said.

About Lyme disease

The bacterial Lyme disease — discovered about 40 years ago — is spread through inflected black-legged ticks, often called deer ticks.

An estimated 5,632 Hoosiers have the disease, although only 704 cases have been confirmed.

Typical symptoms include fever, headache, fatigue and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart and the nervous system.

Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics. Steps to prevent Lyme disease include using insect repellent, removing ticks promptly, applying pesticides and reducing tick habitat.

Source: U.S. Centers for Disease Control and Prevention

More information: indianalymeconnect.org

Watch documentary: http://underourskin.vhx.tv