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Starstruck: NEPA residents brush with stars

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Some of NEPA’s finest body art

This Wednesday, Bambi Albert will set off from her home in Plainfield Township, making the four-hour drive to Arlington, Va., in a 2011 Jeep Compass packed with several days of clothing and a tote bag full of pamphlets and placards about Lyme disease.There, she will join people from around the country, perhaps hundreds, converging in a protest against what might seem an unlikely target: the Infectious Diseases Society of America.&#8220;It always feels good to take action, for sure,&#8221; said Albert, 56, who contracted Lyme, a tick-borne disease, in 2005. &#8220;We&#8217;re actually standing up against the agency that&#8217;s causing all the problems.&#8221;The IDSA, a nonprofit with a stated mission &#8220;to improve the health of individuals, communities and society,&#8221; represents physicians, scientists and other health care professionals who specialize in infectious diseases. It is responsible for establishing the diagnosis and treatment guidelines for Lyme, which are widely followed by the medical community, from doctors to insurance companies.Protesting at the IDSA&#8217;s headquarters, across the Potomac River from Washington, D.C., will be grass-roots group the Mayday Project, which argues the Lyme guidelines are deeply flawed and do more harm than good, primarily by downplaying the disease&#8217;s chronic nature and dismissing alternative treatments. As a result, many Lyme patients languish without access to necessary medical care and other support, according to Mayday.The conflict underscores the contentious state of affairs in Lyme science. Lyme activists accuse the IDSA of being a puppet of the insurance industry &#8212; a perception that both helped to spur and was reinforced by the Connecticut attorney general&#8217;s investigation into the society&#8217;s handling of Lyme nearly a decade ago.That case was settled in 2008 after the IDSA agreed to a special review of its guidelines by an independent panel. Concluding its review two years later, the panel recommended no changes to the Lyme guidelines.Dr. Paul Auwaerter, a Johns Hopkins Hospital infectious disease specialist who volunteers on the IDSA&#8217;s Lyme advisory panel, likens Lyme disease to other issues, such as the John F. Kennedy assassination and global warming, that lend themselves to conspiracy theories.&#8220;When you don&#8217;t understand something, you try to insert a framework that makes sense to you,&#8221; he said.And yet, he continued, he sympathizes with the people who will be gathered outside IDSA this week.&#8220;It&#8217;s extremely frustrating to have problems your doctor cannot solve,&#8221; he said. &#8220;People are looking for answers. People don&#8217;t like unknowns.&#8221;Lyme disease is caused by the borrelia burgdorferi bacteria, which is transmitted through the bite of infected blacklegged ticks commonly called deer ticks. The disease is named after the town of Lyme, Conn., where it was discovered in 1975.The prevalence of deer ticks &#8212; and Lyme &#8212; has continued to spread since then. Last week, the Pennsylvania Department of Environmental Protection announced that deer ticks had been observed for the first time in all of the state&#8217;s 67 counties. Similar studies conducted in the mid-1960s found no specimens.Each year, more than 300,000 Americans, mostly in the Northeast and upper Midwest, are diagnosed with Lyme, making it the most common vector-borne illness in the United States, according to the Centers for Disease Control and Prevention in Atlanta.Initially, Lyme symptoms include headaches, fatigue, joint swelling, muscle pain and gastrointestinal distress. If left untreated, infections can spread to joints, the heart and the nervous system and are often misdiagnosed as other serious ailments, including fibromyalgia, chronic fatigue syndrome and multiple sclerosis.&#8220;The problem with this disease is that it affects everyone so differently,&#8221; said Albert, who is quite aware of the irony in the name she &#8212; someone whose life has been so altered by Lyme &#8212; shares with the animated deer of Disney fame.She has heard all the jokes before, and she still good-naturedly chuckles at them.Albert&#8217;s travails, however, are no laughing matter. After contracting Lyme and receiving treatment for the disease, the former property manager suffered a stroke. She has been out of work ever since, contending with a range of debilitating ailments &#8212; arthritis, swollen lymph nodes, &#8220;brain fog.&#8221;And therein lies the crux of the problem: IDSA guidelines call for treating Lyme with a round of antibiotics 10 to 21 days long, but, said Auwaerter, &#8220;A very small number of people don&#8217;t improve after treatment.&#8221;Such people, according to the IDSA, suffer from &#8220;post-treatment Lyme disease syndrome.&#8221;&#8220;Syndrome&#8221; is a term many Lyme activists find objectionable. To them, it seems to suggest something mental, as opposed to physical. And they believe they are, simply, still infected &#8212; that the spiral-shaped borrelia burgdorferi bacteria has drilled into their flesh and internal organs, including their brains, where it is beyond the healing powers of antibiotics.&#8220;There is no cure,&#8221; Albert said, her voice rising in frustration. &#8220;How can they say you are cured when it never leaves your body?&#8221;Distrust of the medical establishment has given rise to a cottage industry of alternative Lyme treatments, from herbal therapies to prolonged prescriptions of multiple antibiotics. Auwaerter said none has been proven in clinical trials to be more effective than placebos, and some pose serious health risks.Josh Cutler, founder of the Mayday Project, said he is expecting 300 to 500 people to join the protest against the IDSA. The three-day event will commence Wednesday with a candlelight vigil, followed Thursday and Friday by speeches and demonstrations. A memorial quilt will be on display.Cutler, who is 35, contracted Lyme eight years ago. For a time, the former network engineer who lives an hour west of Washington in Winchester, Va., was too sick to get out of bed without the assistance of a wheelchair.Though his condition has improved, the father of two children, ages 10 and 2, said he is still unable to work. He suffers from &#8220;a laundry list of symptoms,&#8221; including fatigue, heart palpitations and issues with concentration and memory, he said.Over the years, Cutler has been tested repeatedly for Lyme. Some results have been positive, others negative. The tests are notoriously unreliable shortly after infection. They are more accurate, though far from 100 percent, in the disease&#8217;s later stages.One of the Mayday Project&#8217;s chief goals is IDSA acknowledgment of the existence of chronic Lyme disease.&#8220;How do I know I still have Lyme disease?&#8221; Cutler said. &#8220;I was healthy before I got bit by a tick, and I&#8217;m still sick.&#8221;On one point, at least, the Lyme activists and many IDSA members are in agreement: the need for more funding for Lyme research. To start with, everyone would like new, more effective tests.Last year, the National Institutes of Health allocated $23 million to Lyme research, or about the same as for tuberous sclerosis, a rare genetic disorder that causes non-malignant tumors, and &#8220;unintended childhood injury.&#8221; Nearly $3 billion went to AIDS, and $1 billion to diabetes.Dr. Jeffrey Jahre, St. Luke&#8217;s University Health Network&#8217;s chief of infectious diseases and a member of the IDSA, said doctors will &#8212; when new findings call for it &#8212; change their practice.&#8220;As of right now,&#8221; he said, &#8220;all you can say is you have an opinion based on what you know now.&#8221;<a href="mailto:skennedy@mcall.com"></a>

Lyme disease activists take fight to D.C