By Lisa Brown
Lyme disease has fought as big a battle in achieving awareness and understanding as those who suffer from it have found in obtaining treatment. Mired in controversy, the disease has been difficult to talk about and finding adequate, affordable treatment even more so.
Rolesville’s Mayor Frank Eagles understands the struggle with Lyme disease personally. As an avid outdoorsman, he’s well aware of the risk. “I love the woods. I spend a lot of time outside and have had many tick bites that I’ve had to deal with,” he says.
Having been diagnosed with Rocky Mountain spotted fever, another tick-borne disease, he knows the seriousness of tick bite prevention and the need to receive treatment early and correctly.
When he was approached a few years ago to declare June Lyme Disease Awareness Month, he was happy to make it a proclamation, and he hopes in doing so it will “educate and make more people aware of the seriousness of it.”
Lyme disease is caused by the bacteria “spirochete” and affects the central nervous system, joints, heart, skin and more. It is known as the “great imitator” and, according to the International Lyme and Associated Disease Society, Lyme disease causes symptoms also seen with rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia, amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), Parkinson’s disease, multiple sclerosis (MS), Alzheimer’s disease, autism and any difficult-to-diagnose, multi-symptom disorder.
When treating Lyme disease, it is important to treat for co-infections that respond to different antibiotics and present differing symptoms.
Testing and diagnosis can be difficult in the traditional sense and most people who have Lyme disease test “CDC negative,” which means standard lab tests will likely come back negative even though the patient is symptomatic.
It takes, then, a good doctor to diagnose Lyme disease clinically and symptomatically, and to treat it according to ILADS standards. Most people who have Lyme disease have never seen a bull’s-eye rash that it is so well known for.
Seeking help of a “Lyme Literate Doctor” is the most important first step if one suspects Lyme disease. For residents of North Carolina, there are just a few to choose from. Their names are kept confidential since many have undergone unnecessary and unfair scrutiny (see below for links for referrals). They also risk professional retribution and loss of their medical license if they use protocols that go against the Infectious Disease Society’s regulations.
According to the Infectious Disease Society and until recently the Center for Disease Control and Prevention, Lyme disease is anything other than a brief nuisance, and “chronic Lyme” does not exist. Those who believe otherwise say a 30-day course of antibiotics is enough to eradicate the disease. But chronic Lyme is now being acknowledged and has been renamed “Post treatment Lyme Disease Syndrome” and protocols are being updated.
New evidence shows that Lyme disease is carried in ways other than by means of a deer tick, including mosquitoes, through intercourse, in utero, and through blood transfusion. It is now considered an epidemic, and the ILADS and the CDC have called it “the fastest growing vector-borne illness in the United States.” The organizations cite 300,000 new cases a year, making Lyme disease almost twice as common as breast cancer and six times more common that HIV/AIDS.
ILADS believes in educating the public to better understand what Lyme looks like and offers these suggestions to combat chronic Lyme:
• Know Lyme disease can be found nationwide
• Avoid grassy areas
• Spray clothing with DEET-containing insecticide
• Wear long sleeves and pants, or long white socks
• Do a thorough tick check after being outside (keeping in mind a poppy seed-sized tick can wreak havoc)
• Show your doctor every rash, not just the bullseye, but don’t assume you can’t have Lyme if you don’t have a rash
• Do not rely on test results
• Do not use a “wait and see” approach. Lyme is much harder to cure in later stages
• Get a second or third opinion
• Know your treatment options
• Expect success.
Eagles hopes that the Town proclamation will help people understand Lyme disease and others like it. “We’re concerned about our residents’ health and are glad to bring awareness to the issue,” he says.
For more information on Lyme disease and to find a Lyme-literate doctor, or LLMD, go to: http://www.ilads.org/
Another resource to find LLMDs: http://www.lymediseaseassociation.org/index.php/doctors