Forum raises Lyme disease awareness

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Katrina Moyna (left) and Larry Gibbs share their Lyme disease experiences at a recent awareness forum held at the Driftless Area Wetlands Centre in Marquette. A multisystem inflammatory disease, Lyme disease can be transmitted to humans by deer ticks that carry the bacterium Borrelia burgdorferi. (Photos by Audrey Posten)

Moyna shows some of the medications she's taken to help combat Lyme disease.

By Audrey Posten, North Iowa Times Editor

Orangish-brown in color, a female deer tick is no bigger than a sesame seed. Her male counterpart is even smaller. But don’t let this insect’s diminutive size fool you. Their bite can pack a mighty punch. Carriers of the bacterium Borrelia burgdorferi, infected deer ticks, sometimes referred to as blacklegged ticks, can transmit Lyme disease.

A multisystem inflammatory disease, Lyme disease was identified in the late 1970s in Lyme, Conn., after an unusual amount of people developed unexplainable arthritis-like symptoms in a tick-infested area.

While still most common on the east coast, the disease has spread throughout the country, including the Midwest. In 2013, the Centers for Disease Control reported over 36,000 cases nationwide. However, researchers believe the number of infections could be 10 times that amount—over 360,000 cases.

Yet, despite the disease’s growing prevalence, many doctors have been reluctant to diagnose Lyme disease. As a result, for those suffering, finding a helpful treatment can be a physically and mentally painful and, oftentimes, lengthy process.

Clayton County Supervisor Larry Gibbs contracted Lyme disease in 2007, at which time he was a wrestling coach.

“I was feeling rundown,” Gibbs explained, speaking at a Lyme disease forum held recently at the Driftless Area Wetlands Centre in Marquette. “One morning, my right knee was puffed up. It coincided with wrestling, so I just thought I was getting too old.”

At the doctor, Gibbs said his knee was drained and he was given a cortisone shot. However, a month later, his knee was bigger. He returned to the doctor and once again had it drained and received another cortisone shot.

“I did this three times,” he said. The cortisone shot wasn’t helping, though. Rather, Gibbs said, it created a super bug. “It really hit me. I became very sick.”

From there, Gibbs was sent to a knee specialist, who was almost ready to replace Gibbs’ knee before passing him on to a rheumatologist.

Wetlands Centre Director Katrina Moyna, who also spoke at the forum, experienced a similar run-around. Moyna said she was bit several years ago, unbeknownst to her. She never found the tick and there was no red bullseye rash, one of the most common Lyme disease indicators. Other common symptoms include brain fog, joint pain (especially in the knees), a stiff neck, muscle pain, fever and extreme tiredness.

It wasn’t until last spring that the disease, which can burrow into a person’s tissue and remain dormant until triggered by stress or other issues, manifested.

“I was worn down and got tired really fast,” she explained. “I lost 15 pounds because I couldn’t eat. Noise really affected me, and, if I moved, I had extreme pain. My joints hurt. I couldn’t walk and had to use a wheelchair. I thought, ‘I’m 25, not 75. What the heck?’”

Moyna said she went to the chiropractor, back doctors and a rheumatologist. She even had several MRIs, all revealing no answers.

“The ER said it was all in my head. They said I wanted attention, that I didn’t want to get better,” she said. “It was a huge strain on my family because they didn’t know what to do. It was the scariest moment of my life.”

Gibbs recalled seeing Moyna at this stage.

“I told her family they had to get her help or she wouldn’t be with us much longer,” he said.

There are two Lyme disease tests, Gibbs said. One is the initial ELISA test, while the other is called the western blot. However, the more commonly-used ELISA test is not as sensitive, and many positives slip through the cracks. Moyna was tested five different times, with all coming back negative. Gibbs said he, too, tested negative.

“I’d had a tick bite, but, when I went to the doctor and they did a blood test, it showed nothing. The doctor said it was probably just a spider bite,” he said, adding, “the western test will probably find it if you have it.”

Moyna said, once she began sharing her symptoms with other individuals, the pieces began falling into place. Although one doctor said “off the record” that she had Lyme disease, Moyna said it wasn’t until she connected with a doctor in Sumner that she was officially diagnosed, not based on a test, but on the symptoms she displayed.

At that point, she was put on antibiotics. A picc line was also inserted, sending medication to her heart, for four months. Although the first several weeks of treatment were rough, and she actually felt worse, Moyna said it got better.

Gibbs agreed. Once he was finally diagnosed, he was put on amoxicillin and doxycycline, then, eventually, a picc line. Those suffering from Lyme disease may need a cycle of antibiotics in order to kill off different strains.

“It made me foggy, but I recovered,” he said, noting that he took antibiotics for a couple years, but has not done so for a year and a half.

Moyna said the picc line and herbal supplements have really helped her. She’s back to work at the Wetlands Centre and she’s able to run again. For others, cutting out junk food, eating more fruits and vegetables or going dairy- or gluten-free helps, as well.

“I asked the doctor,” said Moyna, “how will I know when I’m better? She said to put an ‘X’ on the calendar for each good day. When the calendar is full of good days, then you’re cured.”

The purpose of the recent forum, said Moyna, is to raise awareness about Lyme disease, especially since so many in the medical community are quick to discount it.

“Some people don’t believe it until they see it on a piece of paper,” she said, admitting the possibility she had Lyme disease never crossed her mind. “I was never taught about it growing up.”

“Mayo doesn’t accept Lyme as a disease,” added Gibbs. “But I’m proof, Katrina’s proof and hundreds of others are proof.

“There are many who’ve had it and don’t know it. They’re getting treated for something else.”

Lyme disease can resemble other diseases, such as fibromyalgia, chronic fatigue syndrome, multiple sclerosis and rheumatoid arthritis. If it’s prevented or caught early, said Gibbs, a lot of trouble can be saved.

Deer ticks are most active from spring to fall. While it’s best to avoid areas where ticks live, if you venture out, use insect repellant with DEET. Cover yourself thoroughly with long sleeves, pants and socks. Tuck pants into your socks. Also frequently check for ticks.

Ticks can commonly be found on the back of the knee, under the arm, in the groin area or on the ears, scalp or back of the neck. If one is detected, carefully remove it as soon as possible, using a tweezers to grab the deer tick by the head.

Although not all deer ticks carry the bacteria that causes Lyme disease, Gibbs said some studies have shown 70 percent do. He advocated going to the doctor immediately if a bite is sustained. Even if there is no rash, he said one should ask for at least 30 days of an antibiotic, which should be enough to head off further complications. If a doctor will not prescribe an antibiotic, or only a few days’ worth, Gibbs said to demand more or “go to someone who will.”

“Why take that chance?” he asked.

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