Mary Dell Harrington, 59, of Larchmont, N.Y., considers herself lucky. In 2009, she caught Lyme disease from a tick bite but recovered after taking antibiotics.
“I never saw the bite or the (hallmark) Lyme bull’s-eye rash,” said Harrington. But her doctor recognized her fatigue, nausea and fever as common symptoms.
Not everyone is as fortunate. Some Lyme victims are diagnosed late. Others are misdiagnosed.
In 2012, the U.S. Centers for Disease Control and Prevention said 30,000 Americans get Lyme each year. In 2013, it moved the comma to 300,000. Oops. Many doctors want the comma moved again.
“I see new Lyme patients ever day. Multiply that by the number of doctors,” said Dr. Richard Horowitz, Hyde Park, N.Y., internist and author of Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease.
Named for a Connecticut burg where cases were identified in the 1970s, Lyme is caused by a bacterium that sounds like something your Italian grandmother makes for Sunday dinner: Borrelia burgdorferi. The name lauds the scientist who identified it, Willy Burgdorfer.
The vector (carrier), the deer tick, bites a Lyme host, usually a rodent. Then the tick bites a human and passes on Lyme.
As Lyme spreads from concentrated areas on the East Coast, it has become a political debate between the ISDAs and the ILADSs.
The IDSAs use the Infectious Diseases Society of America guidelines, which say Lyme is not chronic.
“Most (Lyme patients) respond to antibiotics and get better,” said Dr. Marc Tack, IDSA member and infectious-diseases director at HealthAlliance of the Hudson Valley in Kingston, N.Y. “Chronic symptoms like joint pain or fatigue can mean a lot of things other than Lyme — arthritis, MS, mononucleosis; the list goes on.”
The CDC agrees. Some Lyme patients “may have suffered long-term damage to the nervous system or joints,” says its website. They have “post-Lyme disease syndrome,” not “chronic Lyme disease.”
The ILADSs (International Lyme and Associated Diseases Society), on the other hand, say chronic Lyme is real and its victims need “Lyme-lit(erate)” doctors who employ long-term antibiotics.
Supporting these docs are an army of patient-advocacy groups, patients-turned-spokespeople like Katina Makris of Peterborough, N.H., the Under Our Skin documentary and celebrities who recount their Lyme battles. “Lyme is real,” singer Avril Lavigne told Good Morning America, but her treatment followed months of doctors telling her she was “crazy.”
Despite the polarization, though, the two camps agree on these points: We can’t view Lyme in isolation because Lyme-carrying ticks are cesspools of other bacteria that cause “co-infections.” We need better diagnostic tools and treatment for the whole cesspool. Research is underway, but underfunded.
“Lyme is where AIDS was in the ’80s when people were too busy blaming the victims,” said Holly Ahern, microbiology professor at SUNY Adirondack in Queensbury, N.Y., and vice president of LymeActionNetwork.org. “AIDS moved on, and Lyme needs to move on from the political arguments.”
Diagnosing Lyme is not easy. You may get a rash, headache or fever. But if you aren’t treated soon after your tick bite, all hell breaks lose. Chronic Lyme symptoms vary from “Lyme (brain) fog” to facial paralysis and may be intermittent.
“Lyme mimics diseases including rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia, Alzheimer’s,” Horowitz said. In his book, he offers a diagnostic map to rule them out.
Lyme tests are the enzyme-linked immunosorbent assay (ELISA) and the Western blot. They detect antibodies (the body’s disease fighters), not Borrelia, and not until a few weeks after your tick bite. If your test is negative, your insurance may deny treatment, so your wallet hurts, too.
The two tests often contradict each other, explained Lyme victim Dr. Neil Spector of Chapel Hill, N.C., in his memoir, Gone in a Heartbeat.
“My ELISA was positive, but my Western blot was negative,” he said. The lab that issued his “negative” Lyme diagnosis didn’t consider his symptoms, he said, which included years of heart arrhythmias.
Once you have Lyme, you can test positive for years because your body has antibodies, just as you have measles antibodies decades after you gave measles to your sister.
The antibodies tests are wrong so often, “you might as well flip a coin,” said Dr. John Aucott, who is developing aBorrelia test at the new Lyme Disease Clinical Research Center at Johns Hopkins University School of Medicine’s rheumatology division.
One obstacle is the amount of blood needed to find Borrelia, said Dave Ecker, vice president of research and development for Abbott’s Ibis Biosciences, based in Carlsbad, Calif. “It likes to hang out in tissue, not blood.” So Ibis is using a spectrometer to find it in as little as a tablespoon of blood. The next step is to do clinical trials.
TGen Research Institute in Phoenix is using “next generation sequencing” to identify Borrelia through DNA.
“It’s the same technology used by 23andme.com to find your family history, but we’re looking at Borrelia,” said Paul Keim, director of pathogen genomics. Next, TGen will determine the best test specimen to use: blood, tissue or urine.
The current Lyme treatment is a round of common antibiotics. For chronic Lyme disease, doctors prescribe long-term doses.
Studies by Kim Lewis, at Northeastern University in Boston, show that some Borrelia form persister (dormant) cells evade antibiotics, so the best way to attack them is pulsing (on and off) instead of continuous use of antibiotics.
“The trick is to give the dormant cells time to wake up,” said Lewis. Now that the idea has been proved in animal labs, the next step is to do human trials.
Scientists at Stanford School of Medicine in Palo Alto, Calif., are taking another approach. After testing 2,000 existing, FDA-approved drugs in silico (by computer), they found loratadine (brand name: Claritin) anddesloratadine (Clarinex) starve Borrelia of manganese, which it needs to thrive. The next step is to do clinical trials.
“We want to kill Borrelia before it reaches humans,” said Mason Kauffman, CEO of Memphis-based US Biologic. In field trials, its rodent bait reduced Lyme-carrying ticks by 76 percent. After rodents eat the bait, their bodies create Lyme antibodies. When ticks bite these host rodents, the antibodies kill Borrelia in the tick. The company has applied for a U.S. Department of Agriculture license.
The best Lyme defense is prevention. Use insect repellent. Take a shower after being outside. Tick-check your family and pets daily. Remove ticks carefully, so you don’t behead them, and then swab the bite with rubbing alcohol.
A pest management company can treat your property for tick larvae and nymphs, said Jim Fredericks, chief entomologist at the National Pest Management Association. “Ticks hate well-groomed lawns but love woods and weeds,” he said. “So create a buffer on the perimeter with mulch or gravel.”
“Be your own advocate,” urged Marissa Dursin, 27, of New York, whose Lyme disease reduced her from “a very active person to someone who couldn’t string a sentence together.” Beware the doctor who says, “We don’t see Lyme in this state” because he or she hasn’t read recent CDC maps.
Despite the suffering caused by Lyme, increased public awareness and legislation like the Tick-borne Disease Research Transparency & Accountability Act of 2014 will help scientists get tests and treatments to the market, said the experts.
“We’re almost there,” said an enthusiastic Kauffman. “Every day, I can’t wait to get to work.”