Post-Tribune |

Valparaiso woman with Lyme disease warns others about the illness: ‘I just want my life back’

Emily Bohne began feeling constant back pain, unexplainable dizziness, and odd sensitivities to certain foods this time last year. She had no idea what hit her.

It wasn’t merely a cold. It wasn’t influenza. It wasn’t anything she could find online.

“Then my teeth started breaking off, to the point where I had to get six pulled,” said Bohne, 30, of Valparaiso. “They wanted to pull eight more. The dentist asked if I did methamphetamine.”

Bohne returned home and cried.

In May, she had an allergic reaction that sent her into an emergency room with a panic attack. She was told to see a therapist for anxiety issues.

“Every day since then has been a nightmare of symptoms,” Bohne said.

Fatigue. Nausea. Racing heartbeat. Shortness of breath. Feelings of choking. Parts of her body would go numb. And pain all over for no apparent reason, she said.

“It’s absolutely terrifying,” Bohne told me.

Multiple visits to a hospital ER didn’t lead to a definitive diagnosis of her mysterious ailment. Visits to different physicians resulted in conflicting theories of a cause.

“Half of them thought I have Lyme disease, and half of them didn’t,” she said.

One doctor, Dr. Jeffery Smith, who practices in Valparaiso, confirmed to me that Bohne indeed has Lyme disease, an illness caused by a bacterium, Borrelia burgdorferi, and transmitted to humans through the bite of infected ticks.

“Think of it as the size of a poppy seed, which explains why the majority of patients don’t remember being bitten,” said Smith, a 1980 graduate of Indiana University School of Medicine who routinely treats patients with Lyme disease.

Typical symptoms include fever, headache, fatigue and possibly a “bull’s eye” skin rash. But that rash appears in only a minority of cases. In some patients, the disease affects their nervous system, joints or heart, according to the Centers for Disease Control and Prevention.

Each year, roughly 30,000 cases of Lyme disease are reported by state health departments to the CDC. However, this number does not reflect every diagnosed case. Recent estimates using other methods suggest that up to 300,000 Americans may get Lyme disease each year, the CDC reports.

Indiana is classified as a low incidence state, with only 143 reported cases in 2017, according to Indiana State Department of Health.

“Lyme disease waits until your immune system is down or vulnerable,” Smith said. “It could be even a year after the bite that symptoms begin to appear.”

Women are more prone than men to contract it, and even more so if they’re red-haired, like Bohne, according to Smith. Also, people with weak immune systems, trouble detoxifying their body, or genetic problems to perspire properly.

More ticks in Indiana are now carrying the bacterium for Lyme disease, up from previous years, Smith said. And although most people associate Lyme disease with strictly a tick bite, Smith says there are other modes of transmission, including from other infected biting insects.

To this day, Bohne still has no idea what bit her, or when.

“That’s what is so scary,” she said.

Anyone can be infected, if bitten, but not everyone develops symptoms. Lyme disease also can mimic other chronic illnesses such as lupus and fibromyalgia, meaning it’s often misdiagnosed by physicians.

“Patients typically see at least four different health providers before getting the correct diagnosis,” Smith said. “This causes millions of dollars with wrong and costly medical testing in our country.”

If untreated, the disease can spread to other parts of the body for several months or even years after the initial infection, wreaking havoc long after the tick bite.

“It is the most horrendous disease that too many people know nothing about,” said Bohne, who contacted me to share her painful story. “I’ve learned so much since I became ill. I haven’t been able to work, drive or even really function since July.”

“I am finally starting to see some small progress, though I feel trapped in my body,” she said.

A test called the enzyme-linked immunosorbent assay, or ELISA, is often used to detect antibodies to B. burgdorferi. Sometimes, however, it can provide false-positive results.If that test is positive, another one is often given, the Western blot test, to confirm the diagnosis.

“Patients who are unsure can ask for this blot test,” Smith said.

According to the website for the Healing Arts Center in Valparaiso, where Smith is on staff, “Very slowly, the medical community is taking notice – not only of the existence and prevalence of Lyme disease in our area, but of the effects chronic Lyme can wreak on our health. It is going to be a long process, however, in getting people to recognize the scope of this ever-increasing problem.”

Patients who wind up there, like Bohne, often do so after struggling for months or years with an illness they can’t quite pinpoint. The center offers free consultations and, if needed, antibiotic regimens for Lyme treatment, guided by Smith, who first took a focused interest in this disease about five years ago.

“A longtime patient told me there was a serious need in this region,” Smith said.

The diagnosis, treatment, and even the mere existence of chronic Lyme disease is a very controversial topic in the medical community. It’s been this way since I first wrote about it more than 15 years ago.

I’ve written about this disease three other times that I can recall, each time telling readers that my intent is not to over-exaggerate the seriousness of the disease. Instead, if Bohne’s case helps other potential patients to get properly diagnosed, I’d be content. And so would she.

“Some people have no idea if they have it, or if they’ve had it for years,” she said. “And too many doctors don’t even recognize it. It’s the most frustrating feeling.”

“I just want my life back.”