Reading, PA – Pennsylvania Chapter Fundraiser

Reading, PA – Pennsylvania Chapter Fundraiser

Reading, PA – Pennsylvania Chapter Fundraiser

I welcome you all here tonight. On behalf of LDA, I thank program sponsors Leslie and Lauren Giardiello for the tremendous amount of work they have done putting this benefit together in such a short period of time. The cooperation from local businesses, especially the sponsors and donors, has been fantastic, and I want to thank them all. It is a tribute to the Giardiellos, and it also demonstrates the vast thirst for Lyme disease knowledge.

Lyme, the most prevalent vector-borne disease in the US and the most prevalent vector-borne bacterial disease in the world, is present in the most unlikely places from Siberia to CA deserts. Caused by different strains of bacteria and carried by different kinds of ticks, including the Lone star tick, Lyme or Lyme-like disease has spread everywhere.

2002 saw a 40% increase in nationwide LD reported cases, almost 24,000. According to the Centers for Disease Control & Prevention (CDC), that reported number is about 10% of actual cases that met its criteria, meaning 240,000 new cases of Lyme disease in 2002. In 2003, Pennsylvania moved to number one in the nation in reported Lyme disease cases followed by NY & then NJ.

You can be bitten by one tick and contract many diseases caused by different organisms, causing similar symptoms, sometimes requiring different treatments and some of which have a high fatality rate if left untreated or are improperly treated. New diseases with frightening names like Ehrlichiosis, anaplasmosis, babesiosis, bartonella, tick paralysis, and the old standbys of RMSF and tularemia are here.

Only half of people with Lyme remember a tick bite. Remember, the tick which produces most of the disease, a nymph stage deer tick, is the size of a poppyseed, although sesame seed-sized and larger ticks also transmit disease.

Research has shown the bacteria can enter the CNS in less than a day’s time after a tick bite, a problem because many antibiotics cannot penetrate and kill the bacteria there. Here is a picture taken by National Institutes of Health (NIH) researcher Dr. David Dorward, Rocky Mountain Labs, MT. It shows the bacterium entering a cell and killing the cell, a cell which was supposed to kill the bacterium. Additional research by Dr. Dorward has shown something I call the Star Wars cloaking device, the bacteria has the ability to enter a cell and come out of the cell cloaking itself in the cell’s own membrane, thus the body’s immune system does not attack the bacteria because it does not seem to be an enemy.

Therefore, it’s not surprising that 10-15% of Lyme patients go on to develop chronic Lyme disease─a category including those patients who fail treatment, have recurrent disease, or prolonged symptoms and long-term disability.

Early detection and early appropriate treatment help prevent chronic disease. Unfortunately, many doctors are still diagnosing based upon the CDC surveillance criteria, which the CDC clearly states are NOT for diagnosis, because they are very restrictive. The CDC says Lyme disease should be a clinical diagnosis, which is a diagnosis based on symptoms, history, exclusion of other illnesses, with testing used as an adjunct.

Despite that warning, doctors are relying on highly inaccurate tests, especially ELISA’s, for diagnosis. You need to know that you CAN test negative and still have Lyme disease, because your doctor may not know that.

Some doctors diagnose based solely on the presence of the EM, or bull’s-eye rash, which occurs less than half the time. You can have Lyme disease without any rash at all, or with some other type of rash that is not a bull’s-eye. Early symptoms can include a flu-like illness, possibly a low grade fever, muscle aches and pains, lethargy, headaches. The bacteria can remain dormant for months or longer before causing symptoms and can attack all systems in the body, producing skin, eye, musculo-skeletal, cardiac, and psychiatric manifestations. The disease can be misdiagnosed as MS, ALS, Alzheimer’s, lupus, fibromyalgia, chronic fatigue, and even autism.

Unfortunately, some of those at the greatest risk of acquiring Lyme disease are our children, who not only face a high risk of infection through tick bites, but who also may acquire the disease transplacentally at birth from pregnant women who have active disease.

When children develop chronic Lyme, they are not only fighting disease, but they and their parents must also fight to get a proper education. School districts are unaware of Lyme disease problems including its potential psychiatric manifestations. Therefore, instead of getting proper treatment for the disease causing the symptoms, the children are being ignored, punished, or ostracized or they may be improperly classified or not classified at all because some individuals don’t think Lyme is serious.

LDA and a dozen other organizations it is working with nationwide as affiliates, chapters and partners from RI, MA, CT, NY, NJ, DE, PA, KS/MO, and TX to CA are focusing on school issues, and are also educating officials & doctors, providing patient support, and raising funds. These partnerships are necessary because the government has spent little monies on Lyme disease despite the rapid spread of the tick vectors and the disease itself.

Columbia University’s partnership with the Lyme Disease Association & Time for Lyme, LDA’s CT affiliate, to open an endowed research center for chronic Lyme disease at Columbia is moving forward. Proceeds from tonight’s benefit for LDA will go to that center. By spring, we anticipate that about half of the necessary $3M will be raised for the center, the first of its kind in the world for chronic Lyme disease. It will house dedicated researchers to study the enigma we call Lyme disease. Actress Mary McDonnell, LDA’s national spokesperson, is helping support fundraising for the Columbia Center.

Ms. McDonnell is joined on the new LDA honorary board by internationally acclaimed author, Amy Tan, activist Sarah Brady whose husband Jim Brady was Pres. Regan’s press secretary, and Pat Slaughter, appointment’s secretary for the Carter White House. We hope that their spheres of influence will combine to help Lyme patients everywhere.

LDA is also funding other research projects such as mapping the genome of different strains of the bacteria that cause Lyme disease. The first part of the study was already published in the prestigious journal Proceedings of the National Academy of Science It showed that different strains have the ability to freely exchange genetic material among themselves, a finding potentially significant to diagnosis, treatment, and vaccines.

The Lyme Disease Association is a unique nationwide organization, because it is run entirely by volunteers, including me. 98% of monies go directly to programs. It has raised over $2M to date. Besides research, LDA hosts medical conferences for physicians─the 5th national in 2004 Rye NY, jointly sponsored by Columbia University, had almost 300 registrants, many health care providers.

Lyme Disease Update: Science Policy & Law presents the peer-reviewed science behind chronic Lyme disease in a concise format, along with the steps that have been taken by activists and governments across the country. A 2004 LDA published resource book , the Update is written by science writer Marcus Cohen, with the forward by Dr. Brian Fallon and the Preface by author Amy Tan.

Ms. Tan is also supporting LymeAid 4 Kids, a newly created LDA fund which makes monies available to families who have no insurance coverage for children with Lyme disease. Lyme Disease Is No Fun, Let’s Get Well!, a book written for 8-12 year olds with Lyme disease, is now being published by LDA.

One issue LDA has been concerned with is the blood supply. The Army in their 1999 report to congress, expressed concerns about the blood supply and tick-borne diseases. Also in 1999, the CDC with FDA, NIH, DoD held a workshop to discuss tick-borne diseases and the blood supply. The Red Cross (RC) was a major participant. According to a RC memo, the participants concluded that there appeared to be little evidence for transmission of Ehrlichia, RMSF or LD, and they anticipated that the FDA would use that information as a basis for future policies on TBD. Nowhere have I seen mention of the fact that research has demonstrated that Bb has been shown to survive in routine blood banking conditions, i.e., it can survive the blood processing procedures normally applied to transfused blood.

A year or two after the meeting, the RC changed its blood donor policies which now say those with chronic Lyme disease are not eligible to donate blood. If person with Lyme disease was treated with antibiotics and completely recovered, s/he can donate 12 months after last antibiotic dose. Individuals with babesiosis are prohibited from giving blood. The American Society of Clinical Pathologists (ASCP) has similar guidelines. In 2003, the LDA took a nationwide team of 14 and presented this and other issues to the office of Health & Human Services Commissioner in DC. Most of the major CDC & NIH health officials were teleconferenced into the meeting.

Sadly but necessarily, we are growing in numbers and in strength. When I began about 18 years ago, few knew what Lyme disease was. Today, almost everyone knows someone severely afflicted with the disease, someone whose life and whose family suffered immeasurably. For me, that family was mine and that someone two of my daughters, one whose experience was life altering. She spent four years out of school, two more in a few hours a day. She could not read for 4 years and seized for 3, sometimes 15 hours day/ 6-7days/week lost in a world of temporal lobe seizure activity where I could not reach her, since temporal lobe seizures can be like altered state of consciousness. Childhood passed her by as she struggled to learn medical terminology and procedures (her own IVs and IM shots) and while former friends dated and played in band and in sports, she fought migraines, panic attacks, horrendous nightmares, cardiac episodes, G-I disturbances, tremendous pain and worries about ever having children to whom she might pass this dreadful disease.

Today after 16 years of treatment, she is production editor for a prestigious medical journal in Manhattan after graduating with honors from Johns Hopkins University. She still suffers from Lyme disease.

Government and academia may have turned a blind eye to this disease, but we cannot. It is our lives and the lives of our friends and families, particularly our children that we must protect. I will close with a teen’s perspective on Lyme disease:

The Eternal Nightmare

We stand here…and wonder
why it is dark,
A haze covers our lives,
severing us from the world.
We search, grasp-there’s nothing
to support us.
No longer do we laugh;
we cry only grown-up tears.
Our childhood is shattered, our
souls stung and wounded.
Will sun rays ever reach
the children with Lyme?