Rhonda Buker of Newry and Diane Farnum of Roxbury call themselves “partners in Lyme.”
That’s because, they said, they both had Lyme disease over the same period of years, without knowing it. After finally getting diagnosed and treated, they have dedicated much of their time to educating others about the disease.
As part of that effort, they have organized a Lyme Disease Awareness Conference in Mexico on May 5, which will feature two doctors, a nonprofit organization dedicated to education about Lyme, and several panelists.
The two women have known each other for 15 years. Beginning in 2000, they said, they shared the same disease, though Farnum would not be diagnosed until 2005 and Buker until 2008.
Buker says in hindsight, she knows when she was bitten by a black-legged tick, also known as a deer tick, which can carry the infectious bacteria. but she believed at the time that the swelling and red ring on her ankle had been caused by a spider bite, and she thought little of it.
She said she then developed symptoms that included knee problems, fluid buildup, and flu-like symptoms.
As time progressed, more symptoms developed, including fatigue, migraines, memory problems, heart palpitations, numbness in her feet, and a long list of other ailments. She passed out several times, twice while driving.
“I felt like I was in a downward spiral,” Buker said.
As she sought a diagnosis, she said, “I was in treatment for eight or 10 different things. I was told I had stress, that I had depression, that I was a hypochondriac.”
In 2008, now unable to work, she was tested for Lyme. It came back negative.
After a long search for another doctor, she went to what is referred to as a “Lyme literate” doctor, who diagnosed her based on her symptoms. She also had a second test for Lyme, a different type (Igenex Western blot) than the first. It came back positive.
She began treatment with oral antibiotics in June of that year. “I was told I may get sicker before I get better,” she said.
Initially her symptoms improved, but she said she then had a Herxheimer reaction (an increase in symptoms when a treatment is started), “which seemed to cycle almost monthly. I was steadily improving, but in the fall of 2008, I began to have more several neurological symptoms, and unexplained eye symptoms.”
Buker continued to see doctors, including an opthamologist, a neurologist, and an ear, nose and throat specialist, all of whom were skeptical either of the initial Lyme diagnosis, or that she might have chronic Lyme (persistent symptoms and a persistent infection by the bacteria, a condition whose existence is up for debate in the medical community).
“I just could not believe it. Once again I was devastated,” she said.
Her Lyme doctor and an optometrist recommended intravenous antibiotics, she said.
After a fundraiser to help her with expenses, in June 2010 Buker went to Washington, D.C., to see Lyme specialist Dr. Joseph Jemsek.
She said she came home with instructions for 10 months of IV treatment, which was supervised by a doctor in Rumford.
Buker started her IV treatments at home in October of 2010, then after being approved for disability status and going on Medicare, went to Rumford Hospital for treatments, she said.
“I had adverse reactions to some of the medications and was hospitalized on several occasions,” she said.
She had treatments five days a week from February to August of 2011.
“I had to stop in August because the side effects were too much,” she said. “I did it for 10 months and it was worth it. It turned around most of my symptoms, including neurological and eye symptoms. although I finished IV therapy in August, it wasn’t until October that I felt alive again.”
But symptoms began coming back over Christmas, and in January she went back on oral antibiotics. “Now I am facing IV therapy again,” said Buker.
She hopes this time she won’t get as sick, reasoning that the bacteria have had only 10 months to reinfect her, rather than 10 years.
“there is no known cure for chronic Lyme Disease,” she said. “I don’t think I will ever get my old life back. My hope is to restore my health back to a place where I can function. Treatment has shown me that I can get better.”
Note: Longterm antibiotics such as Buker had are questioned by some in the medical establishment. They cite several concerns, among them: that the antibiotics have no effect on symptoms that linger (referred to by the Centers for Disease Control as Post-Treatment Lyme Disease Syndrome, rather than chronic Lyme) after initial treatment; that patients may develop allergies to the medication; and that longtime use can promote the development of antibiotic-resistant bacteria.
Farnum
When Buker was first diagnosed with Lyme, Farnum had been under treatment for three years. unlike Buker, she can’t trace her symptoms back to a bite.
“I lived on Main Street in Mexico,” she said. “I’m not an outdoor person.”
After experiencing a progression of symptoms similar to Buker’s that began in 2000, Farnum was finally tested with the Western blot blood test and found positive. “I’ve been on and off antibiotics and herbals since 2005,” she said.
With the initial treatment, she said, “I had an immediate improvement in the amnesia, within the first few weeks.”
But, she said, “It was over a year into the treatment before I actually felt good. I still have days when I am totally disabled and in bed. Those days are few and between, and they are not as long or as intense as they used to be.”
Farnum formerly worked full-time, but now works part-time.
Tips to avoid infection
Both women have also had recent encounters with ticks. for Farnum, it was a telltale red ring on her scalp that was found by her hairdresser, resulting in another round of antibiotics.
For Buker, it was a deer tick she found on the back of her head during last month’s warm spell, also prompting more antibiotics.
Both said they know numerous other local people who have had Lyme Disease.
The women have some suggestions for preventing infection.
People going outside during tick season – anytime other than the frozen parts of the year – should wear strong tick repellent and check themselves and their family members. Because the ticks and their nymphs (young stage) are so tiny, the women said, they personally find it easier to feel them than see them.
“When my grandchildren come inside, we do ‘tick checks,’” said Farnum. “We’ve done it since they were babies.”
But it’s still not foolproof – her grandson was bitten, got a rash and had a course of antibiotics.
They are also wary of the general rule that ticks that are on the body less than 24 hours rarely transmit Lyme. “I think any attached tick puts you at risk,” said Buker, suggesting people still watch for symptoms or see a doctor.
The women keep their yards clear of leaf and grass litter, places that ticks and nymphs love to hide while they wait for a warm body to come along.
Buker and Farnum have also been working to educate others about the prevention, diagnosis and treatment by making brochures available at many locations. Information sources that the women cite include organizations such as Maine Lyme, the Lyme Disease Association of Southeastern Pennsylvania, and Lyme Disease Association, inc.
They also attend conferences, and it was a conference in New Hampshire a year ago that prompted them to organize one here.
“When we came out, we said ‘we’re going to do this next year,’” said Farnum.
Conference
Their conference, the first annual Western Maine Lyme Disease Awareness Conference, will take place May 5 from 8 a.m. to 5 p.m. at Mountain Valley Middle School in Mexico. It is free to the public.
The women have arranged for Dr. mark Weatherbee, an optometrist, and Dr. Bea Szantyr, a pediatrician, to speak. Szantyr is a member of an online support group in which Buker and Farnum are active, said Buker, and she does voluntary Lyme Disease presentations throughout Maine. Weatherbee, Szantyr’s husband, also does such presentations, Buker said, and he was the optometrist who evaluated her.
A representative of Maine Lyme will also participate. Panelists will include an adult and a child patient, as well as relatives of Lyme patients.
For more information contact Buker at 824-3076 or ; or Farnum at 357-1926 or .
Following is information on Lyme Disease taken from the websites of the Maine Center for Disease Control and the Federal Centers for Disease Control:
Maine Center for Disease Control
Removing ticks: Using tweezers, grab the tick at its mouth, and using firm, steady pressure pull the tick out. if a tick is known to have been attached to the skin for less than 24 hours, the chance of getting Lyme disease is very small. in general, ticks need to be attached for 24 to 48 hours before they can give someone Lyme disease. but to be safe, people bitten should monitor their health closely for one month after a bite, and call a doctor with any early signs of the disease.
Symptoms: Early signs usually occur within the first month after the tick bite. Later symptoms would occur several weeks to several months later. Symptoms may include: a ring-like rash around the area of the tick bite — the rash could resemble a bull’s eye with a clearing center and a distinct ring around it; Flu-like symptoms (fatigue, headache, fever, muscle or joint soreness). Stage signs of Lyme disease include: arthritis, neurological (nerves) problems, cardiovascular (heart) problems.
Federal Centers for Disease Control
Accuracy of testing: the accuracy of the test depends upon the stage of disease. During the first few weeks of infection, such as when a patient has an erythema migrans rash, the test is expected to be negative. several weeks after infection, currently available ELISA, EIA and IFA tests and two-tier testing have very good sensitivity. It is possible for someone who was infected with Lyme disease to test negative because: Some people who receive antibiotics (e.g., doxycycline) early in disease (within the first few weeks after tick bite) may not develop antibodies or may only develop them at levels too low to be detected by the test. Antibodies against Lyme disease bacteria usually take a few weeks to develop, so tests performed before this time may be negative even if the person is infected. in this case, if the person is retested a few weeks later, they should have a positive test if they have Lyme disease. It is not until 4-6 weeks have passed that the test is likely to be positive.
Testing positive after treatment: the tests for Lyme disease detect antibodies made by the immune system to fight off the bacteria, Borrelia burgdorferi. Your immune system continues to make the antibodies for months or years after the infection is gone. this means that once your blood tests positive, it will continue to test positive for months to years, even though the bacteria are no longer present. unfortunately, in the case of bacterial infections, these antibodies don’ t prevent someone from getting Lyme disease again if they are bitten by another infected tick.
Recovery after treatment: Patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely. most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints. Approximately 10-20 percent of patients experience fatigue, muscle aches, sleep disturbance, or difficulty thinking even after completing a recommended course of antibiotic treatment. These symptoms cannot be cured by longer courses of antibiotics, but they generally improve on their own, over time.