Loose Leaf Notes

– The following first appeared in the summer issue of About HER, a regional magazine insert.

Margie Scott grew up about 40 miles north of Lyme Connecticut, the namesake and epicenter of Lyme Disease (LD), a borrelia bacteria infection transmitted to humans by the bite of infected deer ticks. Like most children growing in the 1970s, when LD was first being reported, Scott remembers pulling ticks off her body, but she doesn’t recall ever seeing the circular rash ( often in the shape of a bulls-eye) that is associated with LD.

She was sickly as a child, suffering with migraine headaches and allergies, which she suspects was a result of mold exposure. In later years, other symptoms appeared and included fatigue, body pain and some cognitive impairments. Over the years, she was diagnosed with Epstein Barr, Chronic Fatigue Syndrome and Fibromyalgia. In spite of her diagnoses and symptoms, she managed to develop her potential and help others along the way.

In the late 1980’s, Scott began a self-help journey, living a clean lifestyle, using supplements, good nutrition and treatment therapies in an effort to manage her health challenges. She quit her job as a patient accounts manager in an OBGYN office that she felt was contributing to her chemical and environmental sensitivities. Moving to the woods of Massachusetts, she reduced her stress level, living off the grid and working at Earthlands, an environmental education and retreat center where she worked as executive administrator of programs.

After two years organizing and facilitating events at Earthlands, Scott embarked on a two-year RV road trip and then moved to Arizona, where she lived for 12 years, believing the dry climate there would improve her condition. In Arizona, she had her own business, doing yard care and home care. Later, after hours of onsite training, internet class work and practice hours, she became a certified Life Coach through Mountain Coaching in Colorado. Describing her work as a Life Coach, which she still does today, she said, “I guide individuals, couples and families through life transitions and support them in making healthy choices for happier lives.”

Building on skills that she developed running events at Earthlands, Scott also earned master certification as a Retreat Leader from Mountain Coaching. “I’ve facilitated, lead or organized over 200 events,” Scott recalled. Some of those events were self-care workshops, women’s weekends, art camps, outdoor camping weekends, a clutter clearing workshop and laughter yoga, which she is also certified to teach” she said.

More recently, Scott headed-up the first Lyme Symposium in Floyd County, where she has lived for the past four years with her partner Jay-El Fogo. The Symposium, held in May in honor of National Lyme Month, took place where Scott and Fogo live at the Floyd EcoVillage. The EcoVillage is a multi-generational intentional community focused on energy efficiency and sustainable agriculture. It is home to an event center, a lodge, campground and the Springhouse Community High School.

The Lyme Symposium, titled “Tick Talks,” featured a total of 12 presenters who shared information on the history of LD and other tick borne diseases, LD prevention guidelines, resources, techniques for emotional healing, integrative treatment approaches and more. The event drew over 100 people from the region and beyond. Many of the symposium attendees were LD patients or survivors who shared their personal stories, and some were doctors.

“What motivated me to do it was that we’re in a Lyme epidemic area here in Floyd County and when I looked around I saw that there was no support around for individuals, families or caregivers and nowhere to go to get resources beyond the doctors office,” Scott said, adding that the majority of doctors are under-trained about LD or unaware of its epidemic proportions, but that they are getting better.

A couple of years ago, the CDC (Center for Disease Control) jumped the rate of LD up from 30,000 cases a year to 300,000, a figure that doesn’t take in account how many cases go undiagnosed. “LD compromises the immune system. It’s a whole system issue. It’s not just physical or emotional but affects everything,” Scott said. She cited a Virginia Tech study of deer ticks in Giles County that found that 30% of the ticks there carry the bacteria that leads to LD.

Scott’s ability to function has fluctuated in past decades. Within a month of moving to Floyd, in the spring of 2012, she had a tick attachment. When her symptoms became intense and her knee swelled up in 2013, a Lyme literate doctor from a local clinic tested the fluid using a PCR (Polymerase Chain Reaction) test. It came back positive for LD, which Scott believes probably goes back decades and could be an indication of re-infection and co-infections.

The arthritic swelling and pain that Scott had in her knee and in other parts of her body is a typical symptom of untreated LD. The earliest cases of LD were mistaken for Juvenile Arthritis. Other LD symptoms listed by the CDC include a red circular or bullseye rash, fever and chills, neck stiffness, Bells palsy, swollen lymph nodes, fatigue, sleep disturbances, heart palpitations and neurological problems. The CDC states that approximately 10 – 20% of patients with LD have symptoms that last months to years (Post-treatment Lyme Disease Syndrome), even with antibiotic treatment.

During the time when Scott’s symptoms were at there worst, she was unable to work much, which caused her to question her identity and purpose. That’s when she decided to use her experience and skills and start The Floyd Lyme Disease Support Network. “At last count, over 100 people have come through our doors and we have 5 to 15 regulars,” Scott said. The group meets two times a month at the EcoVillage. The 2nd Wednesday of the month is an educational and awareness meeting with videos to watch or presenters, while the 4th Wednesday is a support group. Along with the Floyd group, there’s a group that recently started up in Christiansburg and one in Roanoke. One of the pluses of support groups is that members can provide recommendations for Lyme literate doctors.

Current tests to determine if you have LD are unreliable and take time, Scott stated. “If you’ve been bitten, don’t wait and see. Seek help from a Lyme literate doctor and get treatment.” A round of antibiotics can provide a cure if you catch it early. The bacteria quickly moves out of the bloodstream and into the collagenous material in the body – the muscles, tendons, joints, connective tissue – and passes the blood brain barrier.

“The best thing to do is practice prevention. It’s better to look a little nerdy than to get Lyme,” said Scott as she described wearing pants tucked into socks when in the woods and overgrown fields. Some people use essential oil spray to repel ticks, and insect repellent (permefrin) can be sprayed on clothing, which is effective through several washes. Scott recently read about a Virginia military base that was getting high rates of LD in their soldiers, and when they began imbuing the fibers of uniforms and fatigues with the insecticide rates went down to almost zero. Tick checks are also a crucial part of LD prevention. Family members can do it for each other or a mirror can be used for self-examination.

“My work is about educating people about the realities. It’s important that people understand what a serious issue this is,” said Scott, pointing out that there is a lot of misinformation out there, such as many people not realizing that 30 or 40% of LD patients never get a bullesye rash. She summed up the seriousness of LD, saying, “Southwest Virginia is becoming a hotspot for Lyme. If you’re not paying attention, it’s not a matter of if you get LD but a matter of when.”

Post Notes and Photos:  1. Scott and her partner tend to approximately 50 chickens and have a small egg production. 2. Scott, pictured in her home at the Floyd EcoVillage, is currently coaching two blended families seeking more harmonious relationships.  3. Scott introduces Steve Webber who facilitated questions for a panel of experts at the May Symposium. 4. A scene from Floyd’s first Lyme Disease Symposium at the EcoVillage. 5. Symposium panelists pictured are Jerusalem Walker, a Family Nurse Practioner at the Tri-Area Health Center in Floyd, Dr. Janine Talty (center) who has been treating Lyme patients in Roanoke for a decade, and Dr. Collins, Floyd chiropractor and author of REGENISIS: Recover Your Health.  – Go to floydcountylymesupport.org for more information or visit them on Facebook.  Read about the Tick Talk Symposium HERE.