BETHEL — The Mountain Valley Lyme Disease Awareness Coalition held its fourth annual informational conference at Telstar High School on Sept. 12.
Most of the nearly 100 people in attendance had been affected by Lyme disease, battling it themselves or supporting a friend or family member suffering from the disease’s chronic form.
Presenters and vendors at the conference provided information about Lyme disease prevention, pain management, and complementary approaches to treatment, including chiropractic and massage therapy, probiotics, and nutrition management.
Following a welcome by conference organizers Rhonda Buker and Diane Farnum, Rep. Deb Sanderson of Maine House District 88 addressed attendees.
Sanderson successfully sponsored a bill in the legislature that will allow Maine doctors to treat chronic Lyme disease with long-term antibiotic therapy without risking censure or license revocation from the Board of Licensure in Medicine. Much of the mainstream medical community does not recognize a diagnosis of chronic Lyme disease.
“I’m fortunate enough not to have Lyme disease—yet,” Sanderson said, adding that the spread of the disease throughout Maine means that “every one of us in this state is apt to get it.”
“None of us likes the idea of long-term antibiotic therapy, but right now there are few other options” for those suffering from chronic Lyme, she said.
Dr. Bea Szantyr of Lincoln, a member of the Maine CDC’s Vector-borne Disease Workgroup, said that over the past decade, Maine has seen a steady rise in cases of Lyme disease, from 245 cases in 2005 to 1,399 cases in 2014.
Szantyr and other health professionals believe that as many as nine out of 10 cases of Lyme go unreported, meaning the actual rate of infection in Maine is probably closer to 14,000 cases annually.
Her “Tick Talk” covered the basics of tick identification, the history and microbiology of Lyme disease, and its prevention, symptoms, and treatment.
She discussed the value of long-term antibiotic treatment, as well as complementary and alternative treatments for chronic and latestage Lyme disease like acupuncture, biofeedback, cognitive remediation, diet, and exercise.
“For folks who have been sick a long time,” she said, “I have never seen them recover without antibiotics, but I have never seen them recover with only antibiotics.”
Speaking to conference-goers via satellite, pathologist Dr. Alan MacDonald, who conducts extensive Lyme disease research on a voluntary basis, discussed the latest research on Borrelia burgdorferi, the bacterial spirochete that is the predominant causative agent of Lyme disease.
In the afternoon, popular Maine actress and humorist Birdie Googins provided some welcome comic relief with her program “Laughter is the Best Medicine.”
Pediatric Lyme specialist Dr. Charles Ray Jones spoke about “Lyme Disease and Kids.” Based in Connecticut, the epicenter of the first identified outbreak of the disease in the 1970s, Jones has treated more than 15,000 children and adolescents with Lyme and other tick-borne diseases.
Awards
Among the annual awards presented by the coalition was the Dr. Teresa Royer MacKnight Memorial Award. Buker and Farnum were joined for the presentation by former Maine House Representative Sheryl Briggs of Mexico, who in 2013 sponsored a bill to include information about alternative treatments for Lyme disease on the Maine CDC’s website.
Dr. Szantyr received this year’s award for “outstanding dedication to and support of the Lyme community of Maine.”
MacKnight, for whom the award is named, was a founder of the International Lyme and Associated Diseases Society in 1999. She was a physician, lecturer, and author who resided in Andover and practiced medicine in Rumford until becoming disabled by neurologic Lyme disease. She died in 2010 at the age of 57 after 14 years of treatment. A personal connection to Lyme The coalition’s co-founders are all too familiar with the suffering experienced by those with Lyme disease, as well as with the difficulties they may face in both obtaining a diagnosis and receiving effective treatment.
Both Buker and Farnum became ill with the disease in 2000, but it took several years before either of them received an accurate diagnosis, they said.
From the outset, Farnum exhibited many of the most common symptoms: intense joint pain, headaches, and debilitating fatigue. But because she did not remember being bitten by a tick and did not develop the classic bull’seye rash, Lyme disease was never considered.
She was treated instead for chronic fatigue, fibromyalgia, atypical migraines, and Ménière’s disease, an innerear disorder that causes episodes of vertigo. After taking six months of short-term disability from her job in 2005, she became totally disabled. Shortly thereafter, a friend with Lyme disease connected her with a naturopath in Kennebunk, whom Farnum credits with saving her life.
Although her treatment has been largely successful, she has suffered several relapses and is currently in aggressive treatment for chronic Lyme and two of its co-infections.
In Buker’s case, even though she did present with the bull’s-eye rash that has become known as a primary indicator of a bite from a Lyme-infected tick, it was misdiagnosed as a spider bite by her primary care doctor, she said.
Over the next eight years, her health spiraled downward. She exhibited clinical symptoms of many illnesses, she said, including multiple sclerosis, Epstein-Barr virus, and benign intracranial hypertension, and was treated for all of them, with little improvement.
In 2008 Buker’s vision began to deteriorate. Suspecting Lyme disease, and at the urging of Farnum, she traveled to Washington, DC to consult a Lyme disease specialist, Dr. Joseph Jemsek. He confirmed the diagnosis of Lyme and recommended intravenous antibiotics to treat it.
Because treatment of the disease with the aggressive long-term use of antibiotics was outside of conventional medical protocol, it took Buker nearly six months to find a doctor in Maine who was willing to treat her according to the plan Jemsek recommended.
After 18 months of intravenous antibiotic treatment, her sight was restored and the other symptoms of the disease were under control, although she has since suffered a relapse and is currently continuing treatment for Lyme, as well as the coinfections Bartonella and Babesia.
According to the website lymedisease.org, more than half of those with a diagnosis of chronic Lyme also carry co-infections, the most prevalent of which are those caused by the Bartonella and Babesia bacteria, Co-infections complicate the treatment of Lyme by increasing the severity of symptoms and extending recovery time.
After attending the LYME 411 Conference in Laconia, N.H. several years ago, Buker and Farnum co-founded the Mountain Valley Lyme Disease Awareness Coalition and held their first local conference in 2012.
Buker said planning has already begun for next year’s conference. She added that the group’s Bethel area Lyme support group meetings have been on hiatus for the summer, but should resume next month.
“We hope to meet via Skype due to the nature of the illness, which prevents many people from getting out to meetings,” she said.
For more information, search for “Mt Valley Lyme Disease Awareness Coalition” on Facebook, email mtvalleyldac@ yahoo.com, or contact Buker at 824-3076 or Farnum at 357-1926.
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