1

Rehoboth Beach, DE – Delaware Chapter Fundraiser

Lyme, the most prevalent vector-borne disease in this country and the most prevalent vector-borne bacterial disease in the world is on the upsurge. It is present in the most unlikely places, I have heard from researchers in Siberia studying the disease and from a state health worker who contracted the disease in the CA desert. Different kinds of ticks such as the lone star are carrying Lyme or the Lyme-like disease the Centers for Disease Control (CDC) calls STARI, Southern Tick Associated Rash Illness. Different strains of the bacteria seem to be causing the disease.


Different types of ticks can carry and transmit many tick-borne diseases. Ticks are now carrying many other new diseases with frightening sounding names such as Ehrlichiosis (HME), Anaplasmosis (HGE) babesiosis, bartonella, tick paralysis, and the old standbys of Rocky Mountain spotted fever and tularemia, which are on the rise. That means you can be bitten by one tick and contract a whole host of diseases caused by different organisms, causing similar symptoms, sometimes requiring different treatments and some of which have a high fatality rate if untreated or improperly treated.


2002 saw a 40% increase in case numbers of Lyme disease nationwide with reported new cases at almost 24,000. According to the CDC, that reported number is about 1/10th of the actual new cases that met its criteria, so that means about 240,000 new cases of Lyme disease occurred in 2002. 2004 saw a decrease in case numbers nationwide but again in 2005, they are on the rise. Delaware moved up to # 9 in the nation in reported cases in 2004, with neighbors Maryland at # 8, New Jersey # 3 Pennsylvania # 2.


Early detection and early appropriate treatment help prevent chronic disease. Unfortunately, many doctors are still diagnosing based upon the CDC surveillance criteria, which the CDC has clearly stated are NOT for diagnosis. Because the criteria are very restrictive, many patients with Lyme disease are not being diagnosed. The CDC says Lyme disease is meant to be a clinical diagnosis, which is a diagnosis based on symptoms, history, exclusion of other illnesses, with testing an adjunct.


Insurance companies often use the CDC surveillance criteria for reimbursement determination. They may also limit treatment reimbursement to four weeks and substitute orals for IV. Therefore, treating physicians have a dilemma: treating sick patients who do not meet the criteria. Privately, several doctors have revealed that their insurance carriers strongly suggested they either leave the plan or stop treating Lyme patients long-term. A few continue to treat, some refer their patients to long-term treating physicians, while others, fearing reprisals or facing economic hardship, stop seeing Lyme patients.


To address Lyme issues, LDA is funding many research projects, with two having been published over the past year in peer-reviewed medical journals. One mapped the genome
of different strains of the Borrelia bacteria and found that the strains have the ability to rapidly exchange their genetic material amongst themselves. Another one showed the presence of Borrelia in mouse tissue along with autoimmune reactions, a double whammy for those infected.


LDA, working with 15 organizations nationwide as affiliates, Chapters and partners from RI, MA, CT, NY, NJ, DE, PA, VA, KS/MO, TX, OR to CA on other Lyme-related problems. Together with its Connecticut affiliate, Time for Lyme, LDA is partnering with Columbia University to open an endowed research center for chronic Lyme disease at Columbia. We have raised about 75% of the funds toward the center which will be the first of its kind dedicated to chronic Lyme disease. LDA has also helped to educate physicians with annual medical conferences, jointly sponsored the past three years with Columbia University, the 6th conference scheduled for October 28 in Philadelphia.


In May, we hoisted Literati with Lyme in Manhattan. Several prominent authors including Amy Tan (Joy Luck Club), Meg Cabot (Princess Diaries), E. Jean Carroll (Elle Magazine, Saturday night live writer), and Jordan Fisher Smith (Nature Noir) worked with LDA and spoke publicly about their experiences with Lyme disease and how it has affected their writing ability in a segment called Writers Block of the Worst Kind. They were joined onstage at New York University by Drs. Joseph Burrascano and Dr Brian Fallon, Columbia University, and Amy Tan held a fundraising event at her Manhattan home.
These partnerships are necessary because the government has spent little monies on Lyme disease despite the rapid spread of the tick vectors and the disease itself.


This pattern of lack of government focus and monies appears to be an anomaly when considered in light of Lyme disease activates at the federal level. Visiting the US Army Centers for Health Promotion and Preventive Medicine (CHPPM) at Aberdeen Proving Grounds, the LDA was surprised at its aggressive program, which includes impregnating army uniforms at the time of manufacture with permethrin for troops going into tick infested areas. CHPPM developed a pocket-sized lab to test ticks in the field so that soldiers may receive immediate treatment if bitten by ticks that test Lyme positive. Babesiosis and ehrlichiosis are also being studied. Tick populations are mapped with resultant data stored in GPS satellites. This data will soon be beamed to soldiers in the field wearing special prototype helmets containing heads-up displays, which will show the soldiers where the heaviest tick concentrations and highest tick infectivity rates are, allowing armies to maneuver around them.

Two weeks ago we were successful in having identical bills introduced into the US House (HR 3427) and US Senate (S 1479) providing for $100 million over five years for Lyme disease research and education. When they are passed, they will formulate a task force including public members who will advise the secretary of health about the areas that need to be addresses such as testing, surveillance, treatment studies, and prevention and education.
The government is finally beginning to listen to its citizens about Lyme disease. Sadly but necessarily, we are growing in numbers and in strength. When I began about 18 years ago, few knew what Lyme disease was. Today, almost everyone knows someone severely afflicted with the disease, someone whose life and whose family suffered immeasurably from the disease. For me, that family was mine and that someone two of my daughters, one whose experience was life altering. She spent four years out of school, two more in a few hours a day. She could not read for years due to intense headaches from reading a sentence or two. She seized for years, sometimes 15 hours day of temporal lobe seizures which are like an altered state of consciousness, lost in a world where I could not reach her. Childhood passed her by as she struggled to learn medical terminology and procedures (her own IVs and IM shots) and while former friends dated, she fought panic attacks, horrendous nightmares and cardiac episodes of various kinds and worried about the morality of ever having children to whom she might pass this dreadful disease.