Mt. Equinox, VT – 2005 Gear Up For Lyme Rotary Bike Climb

August 7, 2005

Mt. Equinox, VT – Gear Up For Lyme Rotary Bike Climb

Pat Smith, President, Lyme Disease Association, Inc.

I want to thank the Holzmans and the Rotary for organizing the second annual bike climb for Lyme disease research. For many of you, today is a way to contribute to a worthy cause, enjoy yourselves, and also to maintain your health.
And health is what this is all about. Lyme disease is adversely impacting the health of a quarter of a million new people each year, the estimated number of new cases that meet the Centers for Disease Control and Prevention surveillance criteria. Lyme is the most prevalent vector-borne disease in this country today, and unfortunately, case numbers all over seem to be generally on the rise. The past several months, I have meet with health officials in NJ, PA, MD, NY, and DC, and everywhere, the burgeoning Lyme story is the same.
Just in the past few weeks, here in Vermont, several lectures on Lyme disease have been featured, which is good considering Vermont had 50 reported cases in 2004, 22 of them considered to be indigenous (acquired within the state). That means that Vermont probably had 220 new cases of Lyme disease that met the CDC criteria and were indigenous to Vermont in 2004. Last fall, tick testing for the bacterium causing Lyme disease in Vermont at three sites in Bennington Co. showed no ticks + at one site, 9% in another, and 21% in a third. On Butler Island (NW Vermont), ticks showed a 49% positivity rate for the bacterium causing Lyme disease.
Elsewhere in New England, in May, I was invited to New Hampshire by the Governor to speak at a press conference at the Capitol on Lyme disease. In June, I was invited by the Massachusetts legislative joint health committee to sit on a hearing panel on Lyme disease. Patients told the panel the typical horror stories of visiting dozens of doctors before they found one to make a diagnosis, then spoke about the difficulties of getting treatment and reimbursement for treatment.
Lyme disease is serious. It can enter the central nervous system within hours of a tick bite. It can hide in your cells, mutate, change forms unrecognizable to conventional antibiotics, and it can even perform a star wars maneuver: it can enter your cells and come out cloaked in the body’s own membrane, thus evading the immune system. It can cross the placenta, causing birth defects and death of the fetus, and it can kill those infected.
In most of the country, the bacteria are primarily transmitted by the bite of the deer tick, ranging in size from a poppyseed to a large sesame seed. With one tick bite, you may contract not only Lyme disease but also diseases with ominous sounding names like babesiosis, Ehrlichiosis, anaplasmosis, bartonellosis, tick paralysis, and tularemia. Each has its own symptoms, each has its own treatment, and unfortunately, each may complicate an already difficult diagnostic and treatment regimen.
Besides the ravages of the disease itself, Lyme can wreak untold havoc on the infected individual and his/her family. Dozens of doctors, years of treatment, piles of unpaid medical bills are only part of the scenario. The other part can be equally devastating, the lack of emphasis placed on Lyme disease. Many think Lyme disease is not serious, it is easy to diagnose and easy to cure. The facts do not bear that out.
I know someone who has battled the disease almost 2/3 of her life. Every day is a struggle, but if you looked at her, you would say, there is a beautiful young woman of 27, a Johns Hopkins honor graduate, with a good job in the medical publishing field, with everything going for her, and she looks fine. You would not know that she missed four full years of school and two partial years, spent most of three years in temporal lobe seizure activity 15 hour s a day, 6 and 7 days a week. You would not know she had hallucinations, psychotic episodes, sometimes was in the fetal position. You wouldn’t know she spent a semester at Hopkins having grand mal type seizures on the floor of her dorm room, refusing to go home because that would be giving in to Lyme disease. You wouldn’t know that while living and working in Manhattan she has had blackouts, seizures, and now developed heart block and low heart rate due to Lyme disease. You wouldn’t know she is in tremendous pain every day of her life and that her muscles get so tight sometimes she can barely move. No, you wouldn’t know, because she smiles her way though never-ending pain. She is truly an inspiration, one that has impressed upon me the need to end this disease and the profound suffering it has caused so many people, especially our children, and she is my child. When she went into the fetal position many years ago and I thought I would never have my daughter back again, I vowed if she recovered, I would never let another family go through the horror we had gone through alone, and I am here today to keep that promise.
The answers to this disease lie in research, and the Lyme Disease Association has been funding research for more than a dozen years now, and we are currently working with our Time for Lyme affiliate in CT to open an endowed research center for chronic Lyme disease, the first of its kind in the world, at Columbia University. Dr Fallon and his team are looking at the brain affected by Lyme disease with state of the art imaging to unlock the secrets of this complex organism. Research requires a monetary commitment. Participation in this race today will certainly help us to move the Lyme disease field forward through increased research.
Two weeks ago we were successful in having identical bills introduced into the US House (HR 3427) and US Senate (S 1479) for $100 million over five years for Lyme disease research and education. When the bills pass congress and when the Columbia center opens, we will be able to battle the disease in the public and private sector, a battle necessary to keep our children, grandchildren, spouses, mothers, fathers, sisters and brothers, safe from the ravages of this disease, a disease whose risks include jogging, walking the dog, and playing on the swingset. LDA is supporting these bills in Congress and hopes you will join us in the commitment to stopping the scourge of Lyme disease.