No easy matter treating Lyme disease

Editor’s note: Last in a three-part series on Lyme disease.

FAIRMONT – Concerns about long-term antibiotic use range from digestive issues, to organ failure, to superbugs – bacteria that develop resistance to antibiotics. Which is why treatment of chronic Lyme disease is at the heart of the controversy behind the tick-borne illness.

Dr. Elizabeth Maloney, who specializes in tick-borne diseases as president of Partnership for Healing and Health, concurs that these are valid concerns that should be carefully weighed by Lyme patients and their physicians before treatment begins.

“Unfortunately, the only tool we have is antibiotics,” she said.

Maloney recommends, at minimum, four weeks of antibiotics as appropriate for early-onset Lyme disease, the reason being the evasive and adaptive capabilities of the bacteria that causes the disease.

Two weeks, however, is the starting point Jessica Sheehy goes by. Sheehy is a physician assistant and Mayo Clinic Health System infectious diseases specialist in Mankato. The longest antibiotic use she has seen is three months for severe Lyme disease.

“Data I’ve seen has not shown any resistance to it,” she said.

While patients using high doses of antibiotics over long periods of time sometimes suffer severe side effects, their physicians are also under fire. In Minnesota, Maloney successfully worked on pushing through a moratorium that stipulates the Board of Health cannot take punitive action against physicians who prescribe long-term antibiotics for Lyme disease. The moratorium sunsets in 2015.

The same is not true in Iowa.

“My first doctor was released by the Iowa Board of Health for treating Lyme,” said Sue Hauskins of Blue Earth. She has been on antibiotics since she was first diagnosed with Lyme disease in 2010.

Before she contracted Lyme, she was an active person, spending time with her family and friends, and volunteering in the community, even helping organize Blue Earth’s sesquicentennial celebration. But then she started getting sick, and the woman who successfully managed as Blue Earth’s city clerk for years found she could no longer balance her own checkbook.

Various medical exams and tests gave no answers to the symptoms she suffered, until her Lyme diagnosis, which she says explained both her physical and mental ailments.

“I was so relieved,” she said. “At least I knew what was going on – I wasn’t going crazy.”

But in retrospect, looking back on the treatment she’s undergone, she now knows: “I had no idea what the journey was before me.”

The high doses of antibiotics have come with their own troubles, from digestive issues to a reaction know in the Lyme disease community as “herxing.” The Jarisch-Herxheimer reaction is allegedly caused when endotoxins are released by the death of harmful organisms within the body – or bacterial die-off.

“I got so sick. I was paralyzed in my arms,” said Hauskins.

What actually causes the herxing reaction is unknown, according to Maloney. It’s sometimes said that herxing is indicative that the Lyme diagnosis is correct – a common idea voiced on unofficial Lyme disease forums – but Maloney denounced this theory. She makes it her business to be aware of some of what she labels as “hype” behind Lyme disease.

Some of the other myths she denounced include the possibility that Lyme can be sexually transmitted, and that insects like fleas and mosquitos are now carrying it. Maloney discourages her patients from using most online forums, which she says tend to dramatize Lyme disease.

Though the data varies and the experts’ opinions often diverge, patient accounts by sources interviewed by the Sentinel were consistent: Long-term antibiotic use has been worth the physical and fiscal costs.

Samantha Wendt of Sherburn was diagnosed this past summer with Lyme disease, and she said there is a strong possibility she’ll be taking antibiotics for about a year.

“The doctor has me on two different antibiotics and other medications for other medical reasons. I start my meds at 4 a.m. and take meds on and off throughout the day ’til about 10:30 p.m. currently,” she said, describing her regimen.

While she acknowledged the treatment is slow, after six-plus months on antibiotics, life has gotten better for her, and the effects of Lyme on her brain, lymph and immune systems have diminished.

Hauskins too has recovered from the severe herxing reaction and considers her current condition a 90 percent improvement over her sickest days with Lyme disease.

“I am so happy to be where I’m at,” she said. “… It was a risk, but it’s worked.”