Between daily naps and popping medicine to help with achy muscles and joints, 25-year-old Lyme disease patient Amber Abolafia of Orient has spent the last six months doctor shopping – looking for a physician who’s truly knowledgeable about her disease.
“It’s scary,” she said. “Our doctors are not informed enough and I don’t think they have the tools to be informed enough. There is just so much more to learn about the disease.”
Her struggle with Lyme led her to join more than 50 other area residents many of whom also have issues with tick-borne illness – for an opportunity to hear from health experts at a special East Marion Community Association forum held last Saturday at the East Marion firehouse.
Infectious disease specialist Dr. Rajeev Fernando of Southampton Hospital and Jerry Simons, certified physician’s assistant and expert contributor to the national publication Lyme Times magazine, spoke about illnesses common on the North Fork — and answered questions from anxious audience members.
The two have teamed up with Southampton Hospital to start the Tick Borne Disease Resource Center, which seeks to educate both health care professionals and the public about tick-borne illnesses — and the correct steps to take if one gets bitten.
The experts said differences in the way physicians test and treat patients can play a huge role in whether the patient is cured or left suffering and searching for answers.
“I am trying to just educate the local doctors and say, ‘This is what we should be doing,’ ” Dr. Fernando said.
In August, the Centers for Disease Control and Prevention reported an estimated 300,000 new cases of Lyme annually in the United States – a tenfold increase over the previous year’s estimate. Dr. Fernando said New York State leads the U.S. in reported cases.
“[The East End] is one of the worse tick areas in the country,” Mr. Simons said. “People in the area should be the smartest people on the planet about Lyme disease because it’s so bad out here.”
The experts spent most of their time discussing Lyme, which is caused by a spiral-shaped bacteria called Borrelia burgdorferi. The tick’s bite transfers the bacteria, which can cause fever, headache and fatigue and sometimes — less than half the time, according to Dr. Fernando — leaves a distinguishing bull’s-eye rash at the site of the bite.
If left untreated, the infection can spread to joints, the heart, the nervous system and the brain, Dr. Fernando said.
Like many other diseases, Lyme disease comes in different strains — and experts warned those attending Saturday’s forum that not all tests check for all strains. Where patients get tested can also play a role in whether they are properly diagnosed, Mr. Simons said.
Commercial blood testing labs, such as Quest Diagnostics, test only for strains required by CDC and Food and Drug Administration. Mr. Simons suggested instead that people find a lab that tests for almost all known strains of the bacteria, such as one of the labs run by Stony Brook University.
While being tested for Lyme, they said, patients should also ask to be tested for other tick-borne diseases, because ticks can carry more than one disease, potentially giving people what’s called co-infections.
“It’s not unreasonable to ask your physician for a four-panel tick-borne disease test,” Dr. Fernando said.
The test, known more commonly as a TBD4 test, checks for Lyme, babesiosis, anaplasmosis and ehrlichiosis – the four most common tick-borne illnesses in this area, he said. Three of these will show up in tests almost immediately, but it can take up to four weeks for Lyme to register in any of these tests, Dr. Fernando said.
“Unfortunately a lot of doctors aren’t exposed to this and they do the blood test too soon,” he said. This means that some infected patients may walk away without being diagnosed. Should someone get bitten and see any sort of rash, Dr. Fernando said his suggested protocol would be to start antibiotic treatment and “tell your doctor it’s going to take four weeks to do the test.”
Ms. Abolafia of Orient was one of those Lyme disease patients who was tested the second she walked into a doctor’s office – about six days after she believed she was bitten. Luckily, she tested positive, she said.
But because of her ordeal, she’s now worried that she may be in the category of people who suffer from what’s known as chronic Lyme.
Ms. Abolafi a said she has been tested three times for the disease – and has gotten mixed results. In the past six-plus months, despite consulting several different doctors, she said she’s taken only 10 days’ worth of antibiotics, the minimum standard course of treatment according to CDC guidelines.
“If I could give advice to anyone, keep pushing your doctor until you get the care you need,” she said. “It’s never going to get better unless you become your own advocate.”
Dr. Fernando said there’s controversy regarding the treatment guidelines for patients who test positive for Lyme.
CDC guidelines for treating Lyme disease state that patients should be put on antibiotic such as Doxycycline for 10 to 21 days but Dr. Fernando said the guidelines should not be used as the end-all for all cases.
“The patient in front of you is what matters the most,” he said. “It’s important to think outside the guidelines in some cases.”
He said about 25 percent of patients may come back within six months of treatment, some suffering from chronic Lyme disease.
But experts are still fighting over whether this chronic stage of the disease even exists.
“It’s very political,” the doctor said.