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Dutchess County, NY – Senator Schumer Press Conference

August 12, 2004

Remarks of Pat Smith, President, Lyme Disease Association, Inc. (LDA) Senator Schumer’s Press Conference, New York, August 12, 2004 [email protected] 888 366 6611

www.LymeDiseaseAssociation.com

Thank you to Senator Schumer for hosting this press conference and asking me to speak here today.

Lyme disease is the most prevalent vector-borne disease in this country today and the most prevalent vector-borne bacterial disease in the world. Different types of ticks are now carrying the disease, their range is spreading, and with one bite, you may contract not only Lyme disease but also diseases with ominous sounding names like babesiosis, Ehrlichiosis, bartonella, tick paralysis, and tularemia. Each has its own symptoms, each has its own treatment, and unfortunately, each may complicate an already difficult diagnosis and treatment regimen.

Ranging in size from poppy-seed to sesame seed, deer ticks, the main tick vector for Lyme disease, can transmit a bacteria that can wreak untold havoc on the infected individual and his/her family. Dozens of doctors, years of treatment, lost income, and 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 by many in the medical and governmental communities. To help address that issue, LDA will present its 5th national Lyme & Other Tick-borne Diseases Conference in Rye NY on Oct 22, 2004 for physicians and health care providers. Columbia University is the co-sponsor.

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 into forms unrecognizable to conventional antibiotics, and even perform a Star Wars maneuver: it can enter your cells and come out cloaked in the body’s own membrane, unrecognized as the enemy it is. It can cross the placenta, it can cause birth defects and death of the fetus, and it can kill those infected. After all, it is a bacterial infection.

The bacteria causing Lyme has been shown to be able to survive in blood under blood banking conditions, although transmission has not been proven. However, the Red Cross has changed blood donor guidelines which still permit those who have been symptom free for one year after antibiotic treatment for Lyme disease to donate blood but now prohibit those diagnosed with chronic Lyme disease from giving blood.

Those individuals at some of the greatest risk of acquiring Lyme disease are our children who often spend years out of school due to effects of the disease. Research at Columbia has established that Lyme patients have experienced a drop in IQ up to 22 points, which has been reversed with treatment.

2002 saw almost 24,000 reported cases nationwide, with the CDC admitting those numbers represent only 10% of cases that actually meet their CDC surveillance criteria. That means about 240,000 new cases of Lyme disease in 2002 alone, staggering numbers especially when you consider 10-15% of Lyme patients go on to develop chronic disease.

Lyme can attack every system in the body and produce cardiac, musculo¬skeletal, ophthalmologic, neurological and psychiatric manifestations. It can mimic many other conditions including MS, ALS, CFS, FM, Parkinson’s, Alzheimer’s, and even in a few misdiagnosed cases to date, autism.

The answers to this enigma lie in research. To date, the LDA has been funding projects coast to coast, some here in NYS that help to determine what happens in the brain with CNS Lyme disease. Specifically, Time for Lyme in CT, our affiliate, and LDA are partnering with Columbia University to open an endowed research center there for studying chronic Lyme disease. LDA is also supporting genomic research related to Lyme disease, even that pertaining to the bacteria in the lonestar tick which produces Lyme or a Lyme-like illness called STARI or Master’s disease.

Unfortunately, the monies our organizations can provide are relatively small, but fortunately, the technology is available to pull this bug apart. Patient organizations are doing their part, but research requires a concrete monetary commitment commensurate with Lyme’s status as the most prevalent vector-borne disease. We owe Senator Schumer a thank you for initiating the process which can obtain that commitment from the government. Lyme patients need an infusion of government monies dedicated to the lack of a gold standard test, to evaluating the CDC criteria which is being used improperly for diagnosing, to performing treatment studies, and even to providing physician education.

Lyme disease funding increases for CDC & NIH are essential to Lyme patients not only across the country, but right here in New York State, a state that gives a new slant to the phrase “we are #1”, and also to patients in Dutchess County, with one of the highest incidences of Lyme disease in America.

Remember, Lyme disease does not discriminate, nor does it confer immunity. It does not require any risky behavior beyond walking the dog, jogging, or playing in the backyard sandbox. The only thing standing between you, your family, and Lyme disease may be the power of these new monies to unlock the secrets of Borrelia burgdorferi, a bacteria causing Lyme disease.

Thank you.