Treatment for long-term Lyme disease sparks long-running debate

Treatment for long-term Lyme disease sparks long-running debate” | The Martha’s Vineyard Times | by Barry Stringfellow | June 1, 2016

While doubts persist about chronic Lyme disease, there’s no doubt that people are suffering lingering, sometimes debilitating symptoms.

Most people infected with Lyme disease are cured with a two- to four-week regimen of strong antibiotics, most often doxycycline. However, roughly 10 percent of those infected will complain of long-term symptoms that include muscle ache, joint pain, fevers, cognitive impairment, and extreme fatigue.

The Centers for Disease Control (CDC) calls this condition post-treatment Lyme disease syndrome (PTLDS). A blood test confirms the presence of the Borrelia burgdorferi bacterium.

“The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well,” the CDC website states. The CDC does not recommend use of long-term antibiotics for PTLDS. “Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications.”

However, there is a growing faction that believes this PTLDS is chronic Lyme disease (CLD). Chronic Lyme advocates maintain that diagnostic tests for Lyme disease are unreliable, and that people presenting with persistent Lyme disease symptoms should be treated with long-term antibiotics, regardless of those test outcomes.

Enid Haller, founder and executive director of the the Lyme Center of Martha’s Vineyard, located in West Tisbury, is a CLD advocate. She tells a different story.

“I never tested positive on the Martha’s Vineyard Hospital’s Elizas [sic] or Western blots,” she wrote in an email to The Times. “I came back negative three times. I finally tried the Igenex [test] — a better-implemented Western blot test — and came back very positive.” Ms Haller believes the Igenex test should be the standard test for the Cape and Islands, including Martha’s Vineyard Hospital. “The Dean Lyme Center at Spaulding Hospital in Charlestown does use the Igenex test, and now has convinced Mass. General to adopt it,” she said.

Ms. Haller told The Times that she suffered the long-term effects of Lyme disease for more than 10 years, and her treatment at the Dean Lyme Center was the breakthrough she’d sought for over a decade. She said getting the antibiotics intravenously, through a PICC line (peripherally inserted central catheter) was the key. The surgically inserted PICC line injects ceftriaxone, a powerful antibiotic, directly into the bloodstream. “Oral antibiotics don’t work as well because they can’t break the blood-brain barrier,” Ms. Haller said. “In November, I could see brain damage from my Lyme disease on a PET scan. I got my PICC line in December, and I felt better immediately. The good news is the damage is reversible.” Ms. Haller said a growing number of Islanders have PICC lines implanted. “The ones who have them for over a year are the ones who don’t relapse,” she said. “This new legislation means people won’t have to fight for PICC lines anymore, which was often the case before.”

Ms. Haller works as a patient advocate at the Dean Lyme Center. “There’s a lot of people coming from the Vineyard and from all over the country,” she said. “Many people are too sick to maneuver once they get here.”

Ms. Haller also runs the support group on Martha’s Vineyard, and runs the Lyme Center of Martha’s Vineyard, described on her website as a walk-in information service for Lyme and tick-borne diseases, from a home on Panhandle Road in West Tisbury. She is certified in New York as a Licensed Clinical Social Worker (LCSW).

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