Picking up Lyme disease from a tick can lead to pain and disability.
by Lisa James
Andrea Caesar’s miseries began when, at age 11, she suddenly found it difficult to run. After a while, “I was the kid who was always missing school.” Years passed; her condition, which now included seizures and severe pain, continued to worsen.
Shelley White’s odyssey began when, as a 14-year-old in Texas, she pulled a tick from behind her ear. At first she developed a bruise-like rash and flu symptoms, followed by neurological problems. Then, at age 21, she stood up and “collapsed to the floor. I would have 10 seizures a day and amnesia. I was debilitated; I had to relearn how to read, write, walk and talk.”
Eventually, both Caesar and White were diagnosed with Lyme disease.
Named for the Connecticut town where it was first identified in the mid-1970s, Lyme disease is caused by a coil-shaped bacterium, Borrelia burgdorferi, which is carried by small mammals before being passed to people by the Ixodes scapularis tick. (Deer have long been seen as carriers but now scientists dispute the role deer play in Lyme transmission.)
After confirmed cases fluctuated in the 20,000-to-30,000 range for years, the Centers for Disease Control announced last summer that, based on newer studies, about 300,000 people develop Lyme yearly. However, this reflects “a revision in the way the numbers are reported, rather than a jump in the actual numbers,” says Gary Wormser, MD, chief of the Division of Infectious Diseases at New York Medical College in Valhalla, New York.
A unique marker for Lyme is erythema migrans (EM), a rash that spreads and partially clears to leave a characteristic “bull’s-eye” pattern. “About 90% of the Lyme cases we see have a rash but some don’t see it until we examine them,” says Wormser. (The ticks, which can be as small as poppy seeds in the nymph stage, are easy to miss.)
Other symptoms include chills, fatigue, fever, headache, joint and muscle aches and swollen lymph nodes. Lyme can progress to include neurological and cardiac difficulties, skin problems and arthritis.
Lyme disease has been called “the great imitator” for good reason. “It mimics all the autoimmune diseases, such as MS and fibromyalgia,” says Daniel J. Cameron, MD, of the Lyme Disease Project in Mt. Kisco, New York.
The slippery nature of B. burgdorferi also makes it difficult to pin down. Alexis Chesney, MS, ND, LAc, of Sojourns Community Health Clinic in Westminster, Vermont, says that in addition to the symptomatic free form, B. burgdorferi can develop into cysts and hide in biofilms, forms the body can’t easily defend against. She says this helps explain Lyme disease’s intermittent nature: “It could be pain in a shoulder one day and in a knee the next.”
Some people experience symptoms after treatment, and that’s where the heart of an ongoing argument lies.
Guidelines from the Infectious Diseases Society of America (IDSA, idsociety.org)—the group whose recommendations are followed by most doctors—state that “a minority of patients continue to report symptoms or signs” after treatment with the usual 14 days of antibiotics. Wormser, who helped develop the guidelines, says, “About 10% of people who had the skin rash continue to experience usually mild non-specific symptoms such as fatigue and joint pain without any objective findings on examination.”
Another group, the International Lyme and Associated Diseases Society (ILADS, ilads.org), says many people who suffer from continued symptoms have chronic Lyme disease, in which the infection itself persists. “There’s evidence that it exists, it’s severe and it’s chronic,” Cameron says.
Lyme blood tests are an additional source of contention. According to a CDC study in Clinical Infectious Diseases (5/30/14) of tests done in 2008 by large commercial labs, only 12% came back positive. ILADS believes one of those tests, the Western blot, isn’t precise enough and that cases are undercounted. “If we had an excellent test we could rely on, that would dispel all of the controversy,” says Chesney.
The dispute affects what treatments are recommended. Under the IDSA guidelines, for example, Wormser says people who come in with Lyme arthritis—a later stage—would be treated with 28 days of antibiotics; in cases of continued joint swelling after treatment, “an additional short course of antibiotics may be beneficial.”
On the other hand, doctors who practice under ILADS guidelines will use longer courses of antibiotics. Probiotics are used to protect against the drugs’ harmful effects on the gastrointestinal tract; other supportive treatments, such as herbs, may also be employed. “Lyme diagnosis sometimes requires more critical thinking in terms of symptomology,” says Chesney. “There is too much reliance on blood testing without thinking about the clinical symptoms.”
White and Caesar, neither of whom was treated for Lyme when they fell ill, believe chronic Lyme explains their problems. “It took them seven years to diagnose me,” says White, 24, who lives in Bergheim, Texas, and publishes a medical newspaper. “It destroyed relationships. I had to quit college. I can’t drive.” She first suspected she had Lyme after watching an ILADS video called “Under Our Skin.”
It took Caesar several decades to get a definitive Lyme diagnosis. Now 39, a sales consultant living in Wolfeboro, New Hampshire, and author of A Twist of Lyme: Battling a Disease That “Doesn’t Exist” (Archway), Caesar has been undergoing intensive treatment for almost three years. “I’m about 80% better,” she says. However, “I still have some seizure activity. I have stiff man syndrome, in which the muscles are very tight. I have arthritis in my spine.”
One thing everyone agrees on is that reducing tick exposure is the best defense against Lyme.
Ticks thrive in brushy, overgrown areas. The CDC recommends clearing tall grasses and trash from around the house; stacking wood neatly; placing three feet of wood chips or gravel between lawns and wooded areas, and around patios; mowing and raking frequently; keeping play equipment in sunny locations; and applying tick pesticide (diatomaceous earth is a less-toxic alternative).
To avoid picking up a tick, don’t walk in high grass and stay in the center of trails. Wear long-sleeved shirts and tuck pant legs into socks. DEET or cedar oil-based repellants can be used on the skin, while permethrin kills ticks on clothing. Try to bathe or shower within two hours of coming indoors. Use a mirror to do a full-body tick check, including under the arms, in and around the ears and in the hair. Also check pets and gear such as packs; ticks may hitch a ride on them.
Remove a tick with fine-tipped tweezers; grasp it close to the skin and pull upwards without twisting. The tick can be tested for the presence of not only B. burgdorferi but other microbes, such as bartonella and babesisia. See a healthcare professional promptly, especially if the erythema migrans rash or other symptoms develop.
Another point of agreement is the need to learn more about Lyme. “We definitely need more research,” says Wormser. “I would like to see more comprehensive studies on what does work,” adds Chesney.
White says, “I would like to see chronic Lyme viewed as a real illness.”