Lyme Events Offer Healing in Solidarity
by Anne Pyburn Craig
With the weather finally breaking, it’s time to get outdoors—but with that welcome thought comes the unwelcome realization that the mid-Hudson and neighboring regions remain the infamous epicenter of Lyme disease. This spring, two smart local organizations are hosting educational events to get you up to speed on the latest information.
On Sunday April 27, Mohonk Consultations is hosting “Lyme Aid and Tick Talk—Seeking Solutions” in the Mountain House parlor from 3-6 pm. Congressman Chris Gibson will discuss Lyme from a federal perspective; Dr. Kenneth Liegner of Pawling will share what he has learned about Lyme management and treatment since 1988; Mason Kaufman, the CEO of US Biologic, will explain the science behind the promising LymeShield technology, and Jill Auerbach, chair of the Hudson Valley Lyme Disease Association and Meredith Johnson, a mental health counselor and wellness consultant, will talk about support groups, prevention tips, and how participants can join their social action networks. Your $25 admission also gets you a tick removal kit.
The following weekend, on Sunday May 4, New Paltz-based nature education not-for-profit Wild Earth will be hosting a family-centered program, “Light on Lyme,” at the Rosendale Recreation Center from 11-5. That event, says program coordinator Esperanza Gonsalez, will bring together eight lecturers, free healing treatments, cooking demonstrations, nutritional education, live music, and nature-based kids’ activities.
Nearly everyone in the area has tangled with the nasty tick-borne bacteria Borellia burgdorfieri by now or knows someone who has, making the red “bulls-eye” rash and the flulike hit-by-an-Amtrak feeling common knowledge. But despite being a widely shared experience, Lyme remains mired in misunderstanding. For one thing, there’s a dramatic conspiracy theory: Lyme disease originated as a Cold War bio-weapon on Plum Island and wafted across the Long Island Sound to Old Lyme, Connecticut in the 1970s, from whence it proceeded to rob us all of much of the innocent bliss brought forth by romping carefree through the fields and woodlands.
Temptingly juicy. But, Dr. Rick Ostfeld of the Cary Institute of Ecosystem Studies, a disease ecologist with a specialty in Lyme research, says the truth is less dramatic. “No one really knows the whole story—reconstituting biological history takes some detective work, and confirmation of theories can be hard to find,” he says. “But it’s safe to ignore the conspiracy theory. The best evidence we have suggests that Lyme bacteria existed in the Northeast and Midwest in pre-Columbian times. Following the European occupation, there was massive clearing of forests—New York and New England went from 90% to 10% forested, which left ticks and other hosts with small pockets of habitation. As agriculture moved west, farms were abandoned and forests re-grew, which set the stage for re-colonization. But the level of hosts, ticks, and bacteria didn’t really become uncomfortable until those habitats became increasingly fragmented due to development. Fragmented forests drive out foxes and owls and allow for exploding populations of white-footed mice, which are the major carriers.”
Uncomfortable is the perfect word for Lyme awareness. The idea of becoming ill through being the host of a black-legged tick’s “blood meal” may just be the only thing out there that can outdo the transmission of STDs in the Gross-Out Olympics. “The ick factor is pretty high in this field, but my fascination with how various creatures ‘make a living’ makes up for a lot of it,” says Ostfeld. “But I do get nervous during the nymph season, May through mid-July. And both of my kids have had tick-borne diseases.”
Ostfeld sees promise in the use of oral bait vaccine—the same US Biologic product being discussed at the Mohonk event—being spread for the enjoyment of the white-footed mice that are the primary carriers of the bacteria. A recently completed Cary Institute study shows that distribution of the bait vaccine in the eastern US by the USDA National Wildlife Research Center was “highly successful” in reducing the infection level. (White-footed mice, by the way, although they can host as many as 200 larval ticks, do not become ill with Lyme.)
“I think there’s promise there,” says Ostfeld. “The mouse population needs to be given several doses a year for several years in a row to maximize the effect, but if you can deliver to enough mice for long enough, it’s effective. It’s not a silver bullet, but it can help—especially combined with other control methods. Bio-pesticides look promising. Some types of soil fungi are lethal to ticks; people are trying to breed strains that kill ticks but not honeybees, spiders, or ladybugs. I’m bullish on developing as an alternative to chemical pesticides.”
Ostfeld acknowledges that the standard advice about keeping every inch of skin tightly covered outdoors is tough to follow. “Who’s really going to wear long pants tucked into socks when it’s 90 degrees out? Nobody. I wear shorts. But one thing you can do that’s easy is to drench your socks and footwear with serious pesticide. The nymphs are the primary threat, and they’re at ground level.”
Ticks are as tough as they are tiny, and Ostfeld says that not even the kind of winter we’ve just survived will reliably reduce their numbers. “The effect of the weather is very hard to study because there are so many different variables that it’s hard to pick out the biggest impact factors,” he says. “The data goes back to 1991, and things you might expect to effect the tick population doesn’t seem to do much. Severe cold snaps with no snow on the ground and hot, dry springs seem to be bad for ticks, but even there there’s no certainty. We could have a drought in August and not see any ticks, and then have a massive thunderstorm and they come out with a vengeance. They weren’t dead, just lying in wait.”
Lying in wait. Lovely. And the real fun starts if, once bitten by an infected tick, you either don’t realize it—which is entirely possible given the tiny size of your assailant and the fact that the bulls-eye rash doesn’t always appear—or aren’t cured by the three-week course of doxycycline that kills the spirochetes in most instances. “Although LD is now the most common arthropod-borne illness in the U.S. (more than 150,000 cases have been reported to the Centers for Disease Control and Prevention [CDC] since 1982), its diagnosis and treatment can be challenging for clinicians due to its diverse manifestations and the limitations of currently available serological (blood) tests,” admits the American Lyme Disease Foundation on its website.
“Challenging” is a kind word for a controversial situation that has some doctors swimming against the mainstream to offer long-term antibiotic therapy for chronic Lyme. One such doctor, Daniel Cameron of Mount Kisco, says he’s been doing battle since 1990 with the medical establishment to gain recognition for and properly treat an illness that—even several decades into a severe crisis—some deny even exists.
“It’s frustrating because patients are used to being able to rely on their primary care doctor for everything, but a lot of the skeptics are waiting on a green light from the medical boards, the Infectious Disease Society of America. They might send you to a neurologist or a rheumatologist, but those specialists don’t have the answer either.”
Lyme disease guidelines set forth by that body in 2006 and confirmed in 2010 state definitively that chronic Lyme does not exist, and that long-term antibiotic therapy prescribed by doctors who believe it does is useless or worse—an attitude that conflicts with the lived experience of a great number of patients and an increasing number of physicians. “Anyone sick can find plenty of evidence-based resources to get to know the disease and treatment,” says Cameron. “It’s just a group of doctors resisting. There is getting to be a body of evidence but it’s still hard to find a doctor who fully understands and treats this. Since it often presents as an overall malaise, exhaustion, achiness and general ‘not feeling good’ condition, some doctors think they’re seeing depression and prescribe antidepressants, which are useless—and once that diagnosis is on paper, it gets very hard for patients to be taken seriously.” Cameron will be presenting his wisdom at the Wild Earth event.
Untreated, Lyme can result in serious neurological damage and enormous misery. The good news is how much is being learned, and the fact that sufferers no longer need to accept being called crazy. “A lot of teachers come with Lyme, and a big one is that we need to stick together,” says Gonsalez. “So we had this vision of creating a big splash of community empowerment and education around it; hence, ‘Light on Lyme.’”
“Since we’re always encouraging people to get outside into the woods, recall their connection to the Earth and nature, and explore, we feel some responsibility to empower and inform them on this issue and help people to discern the most accurate information,” says Wild Earth director David Brownstein. Indeed. Few are willing to forego the outdoors, for ourselves or our families, and we face the risk of becoming a “blood meal” for an infected nymph with considerable courage. But that’s no reason to face it with blinders on. Come out on the 27th, the 4th, or both, and let’s talk about what to do.