This past Friday, 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 (SRH) traveled to one of the nation’s front lines in the public health battle against Lyme disease to speak to a group of Martha’s Vineyard Hospital physicians. “I wanted to do this presentation by Skype because of all the ticks you have here,” she joked.
Dr. Zubcevik was at Martha’s Vineyard Hospital (MVH) to speak at grand rounds, a weekly meeting of clinicians, which on this day was open to the public, resulting in an overflow crowd at the Community Room just off the hospital lobby.
Over the course of the hour, she shared the most recent findings that she and her colleagues have made on the diagnosis and treatment of Lyme disease, in particular on the 10 to 15 percent of patients who suffer long-term symptoms, defined by Centers for Disease Control (CDC) as post-treatment Lyme disease syndrome (PTLDS). She discussed the protean nature of tick-borne diseases, the importance of public awareness, and the urgent need for the medical community to step up its game.
“Graduating medical students and doctors really aren’t educated about the gravity of this epidemic,” she said. “There’s a gap there that needs to be filled. We’re all responsible to educate our young doctors about what this entails.”
Dr. Zubcevic said the recent revelation that actor, singer, and songwriter Kris Kristofferson was cured of dementia once he was properly diagnosed with Lyme disease should be a lesson for medical professionals on how pervasive the disease is, and how often it is overlooked.
“Sudden-onset dementia should really be a red flag for Lyme [disease], especially in people with compromised immune systems,” she said.
“Everyone over 50 has a compromised immune system.”
Dr. Zubcevik said that doctors and parents should know that Lyme presents differently in children than it does in adults. “71 percent of the time, headache is the most common symptom in children,” she said. “Mood disturbance, fatigue, and irritability are also frequent symptoms in children. If they are acting out in school all of a sudden, get them tested.”
Dr. Zubcevik cited a particularly compelling example of undiagnosed Lyme disease where a 29-year-old male had been institutionalized four times for schizophrenia. After a series of tests, and in concert with a psychiatrist, Dr. Zubcevik began a course of daily antibiotics on him. “The first month he could remember what he had for breakfast,” she said. “The second month he could read a chapter of a book, and after six months he was back to normal. He could tolerate light and sound again, which he couldn’t before.”
Tick truths challenged
Dr. Zubcevik said recent research debunks several commonly held beliefs about the transmission and treatment of tick-borne diseases.
“The conception that the tick has to be attached for 48 hours to inject the bacteria is completely outdated,” she said. “There are studies that show that an attachment of 15 minutes can give you anaplasmosis,10 minutes for the Powassan virus, and for the different strains of Borrelia burgdorferi, we have no idea.”
Dr. Zubcevic said the notion that children, infants, or pregnant women should not be given doxycycline is also outdated. “Dermatologists have prescribed doxycycline to kids for years to treat acne; why not for such a debilitating disease?”
She also said the two-day course of doxycycline, often prescribed for people who find a tick embedded on their body, has little or no prophylactic value. “It should be 100 to 200 milligrams of doxycycline twice a day for 20 days, regardless of the time of engorgement,” she said. “It is not a two-day thing.”
The blood tests currently used to detect the presence of the Borrelia burgdorferi bacterium are the enzyme-linked immunosorbent assay (ELISA) and the Western blot test.
Dr. Zubcevik said research has shown there are 10 different strains of Lyme disease in the United States, and many of them do not test positive on the traditional Western blot or ELISA tests. In a previous email to The Times, she wrote that with current testing, 69 out of 100 patients who have Lyme disease may go untreated.
“The bull’s-eye rash only happens 20 percent of the time,” she said. “It can often look like a spider bite or a bruise. If you get a bull’s-eye it’s like winning the lottery. Borrelia miyamotoi, which we have a lot in Massachusetts, will not test positive on either test. That’s a huge problem, so the CDC is moving toward a different kind of test.”
Borrelia miyamotoi also has the potential to spread rapidly, since it’s transmitted directly from mother to offspring. Nymphal deer ticks need to feed on a mammal, most likely the white-footed mouse, to contract the virulent Borrelia burgdorferi bacterium.
In addition to Lyme disease, Islanders are also vulnerable to coinfections such as babesiosis, anaplasmosis, ehrlichiosis, and tularemia, which can also go undetected. “Babesiosis is a malaria-like disease that can persist for months or even years,” she said. “Patients who can’t catch their breath are a red flag for babesiosis.”.