Posted on May 31, 2011 in Blog |
With a few mentions of me in the story . . . .
More than 225 people gathered in Virginia Beach Saturday donning lime-green ribbons on T-shirts and pins. The cause, to promote awareness and garner support for Lyme disease research, drew many late-stage carriers of the disease as well as their family members and friends.
Marking the beginning of tick season and the end of what several states, including Virginia, have mandated to be Lyme Disease Awareness Month, Saturday’s turnout exceeded organizers expectations and highlighted growing concern in the state. Within the first few months of 2011, according to numbers gathered by the Center for Disease Control and Prevention, more Virginians were reported to have Lyme disease than in the entire previous year. The prevelance of a new tick-borne pathogen, Tidewater spotted fever, is another cause for alarm.
In April, the Institute of Medicine published an article entitled, “Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases,” following a 2010 workshop that brought a variety of health professionals, scientists and patients together in Washington.
Workshop conclusions regarding the threat of Lyme disease generally mirrored reports published by the Center for Disease Control and Prevention: Lyme disease is the most reported vector-borne disease in the United States; the reported incidence rate has grown exponentially since the 1990s; treatment of late-stage Lyme disease is costly and challenging.
As reported cases of Lyme disease continue to rise and look to exceed last year’s numbers in most states, some organizations worry that political and health care support is late in catching up. This year alone, more than 2500 cases of Lyme disease have been reported to the CDC, a number that is looking to surpass last year’s tally of 6143.
“There needs to be a mellowing of the relationship between patients and the health care system,” said Joy Walker, Hampton Roads Chapter of the National Capital Lyme and Tick-Borne Disease Association. “Once the symptoms become persistent, a lot of doctors just don’t want to deal with the issue and just provide symptomatic treatment.”
In 2009, Sharon Rainey, an author, entrepreneur and mother was diagnosed with late-stage Lyme disease at the age of 47. She in fact had a co-infection of Lyme disease and Bartonella, or cat scratch disease, which she believes she contracted in 1981.
“I just kept getting more and more symptoms that were migrating and unexplainable,” Rainey said. “The infection is systemic and there’s just so many ways that a body can produce the bacteria and how the bacteria is manifesting in the body.”
Borrelia Burgdoferi is the bacteria, transmitted primarily through tick bites, that causes Lyme disease. It is one of many tick-borne illnesses that can infect on their own or alongside other pathogens.
“There are six species, but more than 300 different strains of the bacteria,” Walker said.
The variety of those strains and the manner in which they react to infected persons’ immune systems makes the disease particularly challenging to treat in later stages.
If treated within the first few weeks of infection with antibiotics, Lyme disease patients have good odds of a full recovery, but late diagnoses can result in chronic pain and even death.
According to the CDC, “Approximately 10-20 percent of patients with Lyme disease have symptoms that last months to years after treatment with antibiotics.” Other studies have found a high rate of failure in treating late stage Lyme disease with antibiotics.
Diagnoses based on clinical symptoms verses blood tests, which can reveal false positives, are slowly becoming more accepted, but late stage sufferers like Rainey feel as though it will take a grass roots effort to expand treatment resources and awareness.
Working with a Lyme Literate Medical Doctor for treatment and watching her son, also diagnosed with late-stage Lyme disease, heal, has Rainey hopeful that she will one day live a life free of chronic fatigue and pain. But the specialized treatment she receives does not come without cost. Most LLMDs are not covered by insurance.
“It’s a devastating financial impact,” Rainey said. “There are some Lyme literate physicians that require a $25,000 retainer just to see you.”
Rainey is writing her second book, “Living with a Chronic Disease,” to emphasize the struggle of life with late-stage Lyme disease.
“I didn’t want anybody else to go through…what I went through,” she said. “I just felt like there’s a lot of shame associated with this disease because many of the patients are viewed as hypochondriacs or over- sensitive or just complaining. I wanted to give fellow patients a validation and affirmation that this is a real disease that needs long-term treatment.”
Walker recommends regular tick checks, particularly behind the ears, in the belly button and groin area, running clothes through a dryer at a hot setting and documenting the effects of a bite.
“We’ve always said an ounce of prevention is worth tons of cure when it comes to lyme disease,” Walker said.