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Philadelphia, PA – Walnut Lane Golf Outing

October 3, 2004

Philadelphia, PA – Walnut Lane Golf Outing

LDA President Pat Smith

I am glad to be back here today in the city of my birth, Philadelphia, and I want to thank all of you for participating today, and especially I want to thank Kevin Magda for all his work putting this event together and for supporting the work of the Lyme Disease Association.
Lyme is the most prevalent vector-borne disease in the US and the most prevalent vector-borne bacterial disease in the world. Different ticks are now carrying the disease, their range is spreading, and with one bite, you may contract not only Lyme but diseases such as babesiosis, Ehrlichiosis, bartonella, tick paralysis, and tularemia, complicating an already difficult diagnosis and treatment regimen.
From poppy-seed to sesame seed size, deer ticks, the main tick vector, can transmit a bacteria that can wreak untold havoc on the infected individual and family. Dozens of doctors, years of treatment, lost income, and piles of unpaid medical bills are only part of the scenario; the lack of emphasis placed on Lyme disease by many in the medical and governmental communities is another. To help address that issue, LDA and Columbia University will jointly present Lyme & Other Tick-borne Diseases: Technology Leading the Way Medical Conference in the Hilton, Rye Brook, NY on Oct 22, 2004, for physicians and health care providers and the public.
Lyme disease is serious. It can enter the central nervous system within hours of a tick bite. It can hide in your cells: a Sept 2004 article in The American Journal of Pathology presents research that confirms that the bacteria are able to hide in certain places in the body (skin & Joints) and evade the immune system. Also, it can mutate, change into forms unrecognizable to conventional antibiotics, and (picture, credit David Dorward, NIH Rocky Mt. Labs) it can go in and kill cells it is supposed to be killed by. It can 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.
Tuesday, the LDA was please when research from a leading team of genomic researchers was published in the Proceedings of the National Academy of Science showing that the bacteria is able to exchange genetic material, that is, it can rapidly mutate to make it better able to disseminate and perhaps even better able to maintain itself in the body. This research could lead to better diagnostic tests and perhaps better treatments. LDA initiated the funding for this research, and was later joined by NIH and other private funding.
The Lyme bacteria can survive in blood under blood banking conditions, and the Red Cross has changed blood donor guidelines now prohibiting those diagnosed with chronic Lyme disease from giving blood.
Our children are at the greatest risk of acquiring the disease, and they may spend years out of school due to effects of the disease. Columbia University research has demonstrated a 22 pt. IQ drop in a Lyme patient, reversed with treatment.
Besides its other past research funding including some projects right here in Philadelphia, LDA and its CT affiliate Time for Lyme are partnering with Columbia University to open an endowed research center there for studying chronic Lyme disease. Unfortunately, the monies our organizations can provide are relatively small, but research requires a concrete monetary commitment commensurate with Lyme’s status. Between 220-240,000 new cases of Lyme disease develop each year, and 10-15% of Lyme patients go on to develop chronic disease. Pennsylvania now ranks 2nd nationwide in Lyme cases.
Research and education are the main strategies to combat this disease. People need to understand that the symptoms of Lyme can vary. They may include a flu-like illness, with muscle aches & pains, joint pains, low grade fever, fatigue and sometimes a rash. Less than 50% of rashes are the classic bullyseye rash, some rashes may be all over the body, at other than the bite site, other shapes, or there may be no rash at all.
Lyme can attack every system in the body and may include cardiac, ophthalmologic, musculo-skeletal, neurologic, and even psychiatric manifestations. It is called the great imitator and can mimic many other conditions including MS, ALS, CFS, FM, Parkinson’s, Alzheimer’s, and even autism. Testing is not accurate and you can test negative and still have the disease.
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 new monies to unlock the secrets of Borrelia burgdorferi, a bacteria causing Lyme disease.