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.
Though their stance is controversial, it has resonated on Beacon Hill. In addition to a bill recently passed in the House of Representatives that would require health insurance providers to cover the cost of long-term antibiotics, Massachusetts was one of the first states to enact a bill protecting doctors who prescribed long-term antibiotics, when Governor Deval Patrick signed it into law in June 2011. The state of Maine, also a Lyme disease hotbed, enacted a similar law only last year.
The blood tests currently used to detect the presence of Borrelia burgdorferi bacteria are the enzyme-linked immunosorbent assay (ELISA), and the Western blot test, which can confirm the results of an ELISA test.
Dr. Nevena Zubcevik, attending physician at Harvard Medical School and co-director of Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital in Charlestown, believes the current testing methods are inadequate.
Backing up her case in an email to The Times, she cited information from a researcher at the CDC: “Barbara Johnson, an expert with the CDC Lyme program, reveals that the current two-tier method is positive in only 31 percent of those with erythema migrans (the bull’s-eye rash associated with Lyme disease) and in only 63 percent of those with acute neuroborreliosis or carditis due to Lyme disease. This means that out of 100 patients who have Lyme disease, we might misdiagnose 69 of them, leaving their infections untreated … Given the current urgent state of affairs, we should be racing to find better testing strategies that will identify all of the Borrelia species and associated co-infections, and to find better antibiotic regimens that will cure our patients.”
Sam Telford, an expert on tick-borne diseases and professor of infectious disease and global health at Tufts University, believes that the current tests are accurate. “There is true chronic Lyme disease, which has arthritic and neurologic symptoms, and sometimes heart issues, and it’s always confirmed with a blood test,” he said. “We’ve known about it for 30 years, and there’s no controversy about that.
“Then there’s post-treatment Lyme disease syndrome. Some people bounce back up in a few days, some take a few weeks, and some feel like crap forever. People can have a positive test after the bacteria is long gone and their body is fighting a phantom. But they test positive. The third is chronic Lyme disease, where people have a range of symptoms and they don’t test positive, and instead of saying, ‘We don’t test positive; it’s not Lyme disease,’ they say, ‘The tests are no good.’ Well, the tests are actually pretty good.”
“You may have heard that the blood test for Lyme disease is correctly positive only 65 percent of the time or less — this is misleading information,” the CDC website states. “As with serologic tests for other infectious diseases, the accuracy of the test depends upon the stage of disease. During the first few weeks of infection, the test is expected to be negative. Several weeks after infection, currently available ELISA, EIA and IFA tests and two-tier testing have very good sensitivity.”
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 support groups at the Dean Lyme Center and at 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).
Dr. Zubcevik suggests that the correct antibiotics aren’t being used to treat the long-term symptoms of Lyme disease. She diagnoses this condition as “persistent symptoms related to Lyme disease,” not chronic Lyme disease. “The drugs we are using might be contributing to persistent bacteria and may not be fully clearing infections,” she wrote in an email. “We need to find these infections early — before life-altering manifestations of cranial nerve palsy, meningitis, myocarditis, arthritis, permanent disability, and death.”
To Dr. Zubcevik’s point, Dr. Ying Zhang, from the department of molecular microbiology and immunology at Johns Hopkins University, has worked on an effective PTLDS treatment for six years. Dr. Zhang told The Times that “current Lyme disease treatments may not clear bacterial debris or ‘persisters,’ which may be one of the possible causes of PTLDS.”
Dr. Zhang said that his work on tuberculosis (TB) is his primary focus; however, advances in fighting TB, e.g. using new combinations of drugs already approved by the Food and Drug Administration (FDA), have yielded promising results in the fight against “persisters.”
A 2014 study he co-authored in the Journal of Emerging Microbes and Infections, states, “We identified 165 [drugs] approved for use in other disease conditions that had more activity than doxycycline and amoxicillin against B. burgdorferi persisters.”
The study pointed out that clofazimine, originally developed for the treatment of tuberculosis, and commonly used for treating leprosy, was one of the most effective agents against the Borrelia burgdorferi bacterium, when used in combination with currently prescribed drugs like doxycycline.
Dr. Zhang said that although his work has shown promise, it has mostly been done in test tubes. Animal testing has only just begun, then human testing will need to be done, which will take three to four years to complete.
“There’s also a need to develop a more sensitive test,” he said. “Lyme disease is different from most other bacterial infections. For most infections, if there’s a relapse, you can see it, the bacteria will grow in a culture. But for relapsed Lyme disease, you can’t culture it. That’s the biggest challenge with Lyme diagnosis. That’s what feeds this [CLD] controversy.”
Prevention the key
Irrespective of advances in laboratories across the world and in the State House in Boston, prevention is paramount when it comes to fighting the spread of Lyme disease.
People can vastly reduce their risk of contracting Lyme disease, and other tick-borne diseases — babesiosis, spotted fever, and ehrlichiosis — by wearing permethrin-treated clothes when working or playing outdoors, and making daily tick checks.
This is especially crucial in the coming two months, when the vast majority of infections will take place.
“Ticks are in the nymphal, or teenager, stage from April through the end of June,” Mr. Telford said. “They’re the ones we’re concerned about. April through July is the riskiest time for Lyme disease. There was already a case of babesiosis diagnosed on Nantucket three weeks ago. People need to be vigilant.”
More information on tick-borne disease prevention can be found on the Martha’s Vineyard Boards of Health Tick-Borne Disease webpage.