| by Krista Madsen |
These things are certain: death, taxes…and, here in the Northeast add to this dreadful list: ticks.
Judging from the fast and abundant feedback I got when I started asking who’s out there in our midst suffering from Lyme Disease, these tiny critters have had a huge impact on the lives of so many here, and in many of these cases, for years on end.
“Ticks love me, I’m a magnet,” said Michael Shanker, who had stage-three Lyme for years in the late ‘80s/early ‘90s only to get bitten recently and treated again.
Tori Weisel got bitten in 2005, but was not diagnosed properly for nine months. “Ultimately,” she said, “I found a Lyme-literate doctor and went on IV drugs for four months. I then began the odyssey of oral antibiotics for three-and-a-half years.” She still feels the “residuals of long-term Lyme.”
On Track Sport Center owner and Greater Sleepy Hollow Tarrytown Chamber of Commerce Board of Directors Co-President Kevin Kaye’s history with Lyme also goes back about 15 years, when he – never knowing he had been bitten – “developed Bell’s Palsy and had to endure a spinal tap to finally confirm that it was Lyme,” he said. “I had two weeks of daily treatment and finally recovered. These days, I’m not quite sure if some of the cramping in my hands and back might be related residual effects of the condition.”
Then there are the newish implants – from the city, from the West Coast – who never knew getting a yard or enjoying a hike in Rockefeller territory came with the real threat of ticks, until they got sick.
Then there are the children.
Heather Johnson Dyer has learned fast how to navigate this world, as she manages care for her family: she, her husband, and her three-year-old boy all have a Lyme diagnosis after a year of uncertainty and suffering. “Our silver lining is we know about it now, so we won’t get it again.”
Treating a toddler posed particular challenges as he couldn’t express what was ailing him. He had tantrums that were beyond the usual tantrums, fatigue beyond the need for naps. Now he suffers a very significant speech delay.
“The double antibiotic doses for five months sounds barbaric for a small child and I had issues with it of course, but it helped,” Dyer said.
Christine Good, whose daughter Barbara, 21, now studying nursing, was diagnosed in the fourth grade and endured four years of treatment. If she went off her meds, said her mother, “she couldn’t lift her head off the table. Her headaches were worse than migraines.”
Good voiced a similar, I did-what-I-had-to-do sentiment as Dyer. “It wasn’t an option to me that she would keep feeling that way,” Good said. “It stunk to give her those antibiotics for four years. I’m sure it had some effect; she was in fourth grade taking horse pills; they were huge.”
Despite the decades of research on Lyme and the growing awareness both in the public and the medical sector, most of the folks I talked to reported, even in more recent cases, that they went through an overly long – often grueling – period of misdiagnosis. This, and the accompanying ineffectiveness of a whole host of doctors and tests, was the main theme they have in common with a disease as varied as it is pervasive.
One doctor suggested Good’s young daughter was suffering from adolescent depression, until they finally they found their way to a legally-beleaguered but beloved specialist in New Haven, Dr. Charles Ray Jones – to the tune of $750 per visit.
Liz Karkoff rattled off the exhausting list of her misdiagnoses in her years’ long battle. “I continued getting misdiagnosed with everything from MS, Lupus, SNSA (an arthritic condition), anxiety (boy, do doctors love that diagnosis), fibromyalgia, hypothyroidism and adrenal fatigue, and mono.”
Dawn Carney, 54, has been in a wheelchair for about seven years from a whole slew of “so many crazy symptoms” that started in her 20s. “I flailed around for a while,” she said, until she found her way to a support group in Irvington lead by Betty Gross, who has since passed away. She finally got a clinical diagnosis from a renowned Lyme specialist in Hyde Park, Dr. Richard Horowitz, and an IV, which slowed the progression down. “It’s been so long of a journey.”
There’s this in-joke for the Lyme community: “once they suggest you need therapy, you’ve got Lyme,” Carney said.
Mt. Kisco’s Dr. David Cameron, another among the few specialists who patients consider “Lyme-literate,” talked to me at length in what must be his busiest season about the trickiness of Lyme.
“There is more to worry about in a tick than Lyme,” said Cameron, listing three other infections, including a new one that’s emerged that can’t be measured with a routine test. “These three infections in a tick are more common than everyone had anticipated. So, a doctor’s job becomes even more challenging, determining who gets treated and what to treat them with.”
Lyme has become more of a convenient catchall than an accurate label. “We use the word ‘Lyme’ because people recognize it but really it means you got bitten by a tick that carries various infections and bacteria,” Cameron said. “When doctors treat they often approach Lyme as a rash and treat just Lyme for such a short period that they miss the opportunity to treat all the other infections in someone and miss the chance to help them get better.”
“More doctors are doing what they can and have an interest. I’m encouraged by the movement,” Cameron said. “Doctors just have to be aware that the tests aren’t that good and two trials of antibiotics aren’t effective.”
The consensus, both scientifically and anecdotally, seems to be that we’re in for a heavy tick-infested summer and that the tick population is growing in general, and spreading further across the country to places that previously never knew Lyme. “It certainly seems as if the tick population is growing in the Northeast,” Cameron said, citing tick specialists with boots on the ground counting specimens, as well as increasing incidents of chronic conditions.
Cameron attributes the rise of ticks to the growing population not of deer, but of people, moving to the suburbs and generating more of the trash that helps the mice population flourish.
“The deer don’t carry the disease, they give a meal to a tick,” Cameron said. “The mice carry the disease and they live happily ever after. They live for a tick to get a meal. The mice get infected by the tick and then live to infect more ticks who get a meal. The real disease is from all the ticks biting the mice.” The birds have a role in this too, transporting the ticks from yard to yard.
Cameron understands why the Lyme community needs to be loud and opinionated. “If you’ve suffered for a decade you don’t want anyone else to have to go through that,” he said.
As for precautions, “we don’t know how effective they are,” he said. Taking a bath or using an insecticide is reportedly found to decrease the risk of infection by a mere eight percent. “We’ll take what we can, but it’s not good enough because people are still getting Lyme,” Cameron said.
There’s a movement afoot in the Lyme community to bring awareness and funding to the disease in the way that the ice bucket challenge did for ALS. To “Take a Bite Out of Lyme” and learn more visit: http://lymediseasechallenge.org/
U.S. Center For Disease Control makes these recommendations regarding the prevention of tick bites:
While it is a good idea to take preventive measures against ticks year-round, be extra vigilant in warmer months (April-September) when ticks are most active.
Avoid Direct Contact with Ticks
- Avoid wooded and bushy areas with high grass and leaf litter.
- Walk in the center of trails.
Repel Ticks with DEET or Permethrin
- Use repellents that contain 20 to 30% DEET (N, N-diethyl-m-toluamide) on exposed skin and clothing for protection that lasts up to several hours. Always follow product instructions. Parents should apply this product to their children, avoiding hands, eyes, and mouth.
- Use products that contain permethrin on clothing. Treat clothing and gear, such as boots, pants, socks and tents with products containing 0.5% permethrin. It remains protective through several washings. Pre-treated clothing is available and may be protective longer.
- Other repellents registered by the Environmental Protection Agency (EPA) may be found at http://cfpub.epa.gov/oppref/insect/.
Find and Remove Ticks from Your Body
- Bathe or shower as soon as possible after coming indoors (preferably within two hours) to wash off and more easily find ticks that are crawling on you.
- Conduct a full-body tick check using a hand-held or full-length mirror to view all parts of your body upon return from tick-infested areas. Parents should check their children for ticks under the arms, in and around the ears, inside the belly button, behind the knees, between the legs, around the waist, and especially in their hair.
- Examine gear and pets. Ticks can ride into the home on clothing and pets, then attach to a person later, so carefully examine pets, coats, and day packs.
- Tumble clothes in a dryer on high heat for an hour to kill remaining ticks. (Some research suggests that shorter drying times may also be effective, particularly if the clothing is not wet.)