image_pdfimage_print

Long Branch, NJ – Rally Outside Congressman Pallone’s Office

I welcome you here to the County where I have lived for 37 years. Monmouth County is usually known for its part in the Civil War! The Battle of Monmouth was fought not too many miles from here, in 1778. That battle was declared a draw. In 1978, 200 years after that battle, Lyme got its start here in NJ in Monmouth County! that was 30 years ago. 49% of NJ cases at that time were in Monmouth County. Today, the County ranks 2nd out of 21 NJ counties in case numbers. Monmouth has a long history of Lyme-related events, from the disease springing up here first, to the first at large Congressional meeting in 1992 in my hometown about 15 miles from here. Wall Township was a relatively undeveloped 32 square miles, when Congressman Chris Smith, now sponsor of the Lyme bill, brought together public officials, doctors, patients and advocates to explore the problems of Lyme disease. There was a packed house with patients from all over the Northeast. That was my first experience as a speaker on a government panel for Lyme disease, but unfortunately, not my last. A 14 year old girl sat on that panel, one who had already been out of school for several years at that time. She addressed the crowd and she ended in an emotional voice with “My whole life has been consumed with Lyme disease. I used to be a normal teenager talking about soccer, music and boys. Now my vocabulary consists of Herxheimer, IV claroran, Ixodes ticks, spirochetes, and MRIs. Before, I worried about how my hair looked, now I worry about blood test results, passing Lyme onto my children and dying. After this meeting, don’t think you know all there is to know about Lyme disease. Believe me, you don’t know anything about Lyme until you have it.” That girl received a standing ovation.

What the panel and audience did not know was that child was having frequent seizures at that time, seizure states that progressed to 15 hrs day, 6-7 days/week. She could not talk about her seizures then. Doctors told her mother that the authorities would come in and take her daughter away if she talked about what was happening. So that mother dealt with it herself, an experience that is burned into her very soul, an experience which passing time and becoming a grandmother 3 times cannot erase! A life altering experience.

That mother stands before you today to say that Lyme patients have come a long way. Last week they celebrated a great victory with the settlement announced by Attorney General Richard Blumenthal which forces IDSA to re-examine its Lyme treatment guidelines in a more public and less biased and less vested manner. That settlement came about because Lyme groups went to the Attorney General and told him their concerns, and he listened. He heard them. He acted responsibly. Today we are here to make Congress listen. When they hear us, they will act. Then we will finally be on the road to helping patients and curing this disease. The shame, stigma, and dangers of having Lyme disease will eventually be in the past, and no adult, and no child will ever again be ridiculed. No mother will be made to feel she needs to lock her child’s disease away to protect her child. The first battle of Monmouth lasted a day and had 650 casualties. It was considered a draw. This 2nd battle of Monmouth played out nationwide, the Lyme disease one, has lasted for 30 years. There have been hundreds of thousands of casualties with no end in sight. Many of those casualties are our children. This battle will not end in a draw but will end with victory for patients, whether today or in the future, but at what cost? We must hold our government accountable or all Lyme patients, especially our children. We can and we must make them listen, now, today, before we have even one more casualty from Lyme disease. Thank you all for coming today.