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Rye, NY – Lyme Awareness Night

January 31, 2003

Rye, NY – Lyme Awareness Night

Pat Smith’s Remarks in Rye, New York, January 30, 2003

We’re here tonight to talk about a disease that has been described by mainstream medicine as easy to diagnose and easy to cure. Doctors’ response to a patient may range from “the symptoms are all in your head” to “you had Lyme disease, you no longer have it, but I don’t know what you have.”

It is a disease called the great imitator due to its ability to mimic many other conditions. It has been misdiagnosed as MS, lupus, ALS, fibromyalgia, chronic fatigue and even Alzheimer’s. Symptoms can range from fatigue, headache, and joint pains to memory loss, mental confusion, and blindness.

The familiar bull’s-eye rash occurs less than 50% of the time. The tests most often used to diagnose are about 40 % accurate. The diagnosis can be complicated by the presence of other diseases you get at the same time from the bite of the same tick. Diseases with fear-inspiring names like Ehrlichiosis, babseiosis, and Bartonellosis may be relatively easy to conqueror when you get them alone, but when combined with Lyme disease, they ravage the body and overwhelm the immune system.

Research has shown that the spirochete-shaped bacterium that causes Lyme can enter the CNS within a few days after the tickbite, and it loves to hide inside cells and in the joints, the eyes and the brain, all places antibiotics have difficulty penetrating.

Star War fans might remember the cloaking device that shielded Klingon ships from discovery by making them invisible. The Lyme bacterium has its own cloaking device as it goes inside your cells and comes out pulling a piece of cell membrane around it, making it invisible to the body’s immune system.

This bacterium is designed to survive, and when the climate in your body becomes inhospitable for the bacterium and its existence is threatened, it changes form to a cyst shape, which is not recognized by conventional antibiotics.

The genetic material of the bacterium has been found in breast milk, and the bacterium can cross the placenta and cause birth defects or death of the fetus.

Recently, the Red Cross changed its guidelines to say people diagnosed with chronic disease can no longer give blood. Does that mean it can be passed through the blood supply? No one knows for sure. The bacterium that causes Lyme is similar to the one that causes syphilis. Can it be sexually transmitted? No one knows for sure, yet Lyme has been around over 25 years.

17,000 cases are reported each year to the Centers for Disease Control & Prevention, CDC. According to the CDC, 10 times more cases actually occur, 170,000 cases each year. Yet very little government or corporate monies are being invested in battling the disease. The patients and the doctors who are dedicated to treating them have been left out on a limb while the storm which surrounds this disease tosses them about, threatening to break the limb at any moment, hurling its hapless victims into oblivion, which is where it appears, some would like them to be. Out of sight, out of mind.

As with many issues, those affected are left to defend themselves. Our only defense against the disease is research, and the only way to get research is to raise monies to unlock the secrets of this deadly disease.

To that end, the Lyme Disease Association, LDA, has been raising monies for research for many years. Who are we? We are victims and families of victims who get little or no help with our efforts from government agencies, although individual lawmakers at the state and federal levels have begun to recognize our plight.

Funds we raised for Dr Fallon gave him preliminary data he used to receive a $4.7M NIH grant for a very important treatment study. Funds we raised have supported research showing people can experience a drop in IQ of 22 points. Funds we raised are looking at the possibility of sexual transmission. Funds we raised are being used to study and compare different strains of the Lyme bacteria to find out where their weaknesses lie to be able to target those areas with treatment.

Our organization has affiliated with The Greenwich Lyme Disease Task Force. Who are they? Victims and families of victims. Together, we are racing against time to find help for those afflicted and prevent those who aren’t from becoming afflicted. The walkathon that the Voss Family is hosting in the spring to raise money for Lyme disease through the Task Force will help them and ultimately, all of us, do our job.

The LDA and the Task Force have become partners with Columbia University to open an endowed research center for Lyme disease, the first of its kind in the nation. It will be housed in the state with the highest number of cases, New York. An established center can support the best Lyme researchers dedicated solely to unlocking Lyme’s secrets. To establish the center takes hard work and funds. We have already committed to that.

Remember, Lyme is everywhere, and it can strike anyone, at any time. Risky behavior may include petting the dog, jogging past some weeds or low trees, playing in the sandbox, even bringing home a live Christmas tree. We hope you will join us to stop the most prevalent tick-borne disease in this country before it claims another victim who may be you, your spouse, your child, your mother or father. Support the walkathon, support Lyme research, and support the endowed center at Columbia through the Greenwich Lyme Disease Task Force. Thank You.