NY– Assembly Health, Education & Codes Committee Lyme Hearing
PAT SMITH’S, PRESIDENT, LYME DISEASE ASSOCIATION, TESTIMONY TO NEW YORK ASSEMBLY HEALTH, EDUCATION & CODES COMMITTEE, JANUARY 31, 2002
PAT SMITH’S, PRESIDENT, LYME DISEASE ASSOCIATION, TESTIMONY TO NEW YORK ASSEMBLY HEALTH, EDUCATION & CODES COMMITTEE, JANUARY 31, 2002
Doctor Greg Bach, Professional Advisory Board Member for the Pennsylvania Chapter, Lyme Disease Association (PCLDA), and Jeri-Lynn Weir, Co-president PCLDA, Edina Gibb, LDA County Coordinator, and Pat Loughran had previously met with Mary to discuss the effects of Lyme disease. After my three days with Mary in California, she agreed to become a spokesperson for the Lyme Disease Association. A few days after I retuned home from California, I attended the Columbia University luncheon honoring the effort of our affiliate, Greenwich Lyme Disease Task Force (GLDTF), and LDA and our initial commitment to the endowed Lyme disease research center. Mary flew to New York to join us for the luncheon and met Dr. Brian Fallon and Dr. Carolyn Briton in person. Dr, Briton, Columbia neurologist, had given the LDA powerful video presentation for the Albany hearings.
On my last day on the southern leg of my trip, Barbara Barsochini arranged for me to be interviewed for a TV program on Lyme disease, which continues to air, for Malibu Public Television. Barbara proved to be a delightful host and knowledgeable interviewer. Before I traveled North, I also received word that the Lyme Association of Greater Kansas was interested in coming on board as an affiliate of the LDA. I had conferenced with them and we had emailed back and forth prior to my trip. This was affiliate number five.
Flying north, I was singled out for a wand and luggage search on my flight to Palo Alto, making me cognizant of the strict procedures put in place to screen for terrorists. There was something about that episode that made me confident the government was doing its job. It also made me continue to wonder why we had not yet developed strict screening procedures for Borellia burgdorferi, a terrorist of another sort, an unseen enemy slowly marching its way across the nation almost unopposed by those who are charged with stopping its carnage.
The Harrises were wonderful, although Dr, Harris may have some observations on the heft of my suitcase he was too polite to mention, and the tour of IGeneX Labs was elucidating, as I was able to actually see firsthand some of the tests being performed and meet those responsible for carrying them out. I was surprised at the amount of interest in the LDA and Lyme disease from IGeneX staff.
Karen Chew was my next host, and her friendliness, not to mention her penchant for fabulous cooking, was not dampened even when my suitcase knocked over her lemon tree. She introduced me to someone whose avocation, I believe, makes her a valuable ally to the Lyme community. Karen drove me to the lovely Sacramento Valley, home to the meeting of the California Lyme Advisory Committee where I was able to finally put faces to the names of many Lyme activists whom I had communicated with over the years and who are doing a great job in California, including Peg Leonard and Nancy Brown. The judge I mentioned earlier showed up to hear me speak, but unfortunately, had to catch a plane before that happened at the end of the day.
I believe what I said was well received, and some health department officials who attend asked for copies of the speech to be disseminated. Unfortunately, I spoke extemporaneously, but the entire event was videoed courtesy of Dr. Lynn Shepler, who agreed I could have a copy of the tape, which I am anxiously awaiting. Dr Shepler has been a continued critic of the Council and was instrumental in helping obtain open forums.
NY– Assembly Health Committee Lyme Hearing
The Lyme Disease Association’s mission is Lyme disease education, prevention, and research funding, so one might automatically assume we’re favorable to a safe and effective vaccine for Lyme disease. That’s certainly a valid assumption. The Association’s board consists of patients and families of patients—all of whose lives have been personally touched by this disease, and all who are dedicated to preventing others from experiencing the physical, mental, and emotional devastation Lyme disease can produce. To that end, we fund research projects, sponsor medical conferences and continue to work with Members of Congress developing federal legislation providing $125 million for Lyme disease research, physician education, and prevention.
Sunbury, PA – Conference Hosted by PA Representative Merle Phillips
(For introduction: Pat Smith, President, Lyme Disease Association; Member, Board of
Directors, ILADS, International Lyme & Associated Diseases Society; Advisor, Greenwich Lyme
Disease Task Force; Former chair, Governor’s Lyme Disease Advisory Council (NJ); Former
President, Wall Township Board of Education)
Lyme Disease Association President Pat Smith’s Remarks in Sunbury, PA Forum
Sponsored by PA House of Representatives Majority Leader, Merle Phillips
The Lyme Disease Association, LDA, is an all-volunteer national organization providing Lyme
disease education and funding for research projects coast to coast, a number of which have been
published in peer reviewed literature. Several past projects LDA has funded in Pennsylvania
were at Fox Chase Cancer Center and at University of Pennsylvania. Additionally, we are
funding a study here looking for the Lyme disease bacteria in semen to take the first step to
determine whether Lyme disease may be sexually transmitted.
The LDA has a Pennsylvania Chapter and has five national affiliates including the Lyme Disease
Association of Southeastern Pennsylvania. Along with its CT affiliate, the Greenwich Lyme
Disease Task Force, LDA has partnered with Columbia University to open an endowed chronic
Lyme disease research center to be housed at Columbia. We are beginning a national
fundraising effort for the center, with LDA and GLDTF already having already contributed $.7
million, leaving $2.3 million remaining to open the center.
Lyme is the most prevalent vector-borne disease in the U.S. and the most prevalent vector-borne
bacterial disease in the world, yet is rarely given the weight it deserves. The situation facing
patients in Pennsylvania is a microcosm of the national scene. Patients frequently cannot obtain
diagnosis, treatment, insurance reimbursement, disability, education or even understanding from
their families and peers because treating physicians have faced a variety of licensure sanctions
including being supervised, fined, not allowed to treat Lyme patients, and license suspension and
This pattern of patient and physician problems appears to be an anomaly when considered in
light of activates at the federal level. Visiting the US Army Centers for Health Promotion and
Preventive Medicine (CHPPM) at Aberdeen Proving Grounds, the LDA was surprised at its
aggressive program, which includes impregnating army uniforms at the time of manufacture with
permethrin for troops going into tick infested areas. CHPPM developed a pocket-sized lab to test
ticks in the field so that soldiers may receive immediate treatment if bitten by ticks that test
Lyme positive. Babesiosis and Ehrlichiosis are also being studied. Tick populations are mapped
with resultant data stored in GPS satellites. This data will soon be beamed to soldiers in the field
wearing special prototype helmets containing heads-up displays, which will show the soldiers
where the heaviest tick concentrations and highest tick infectivity rates are, allowing armies to
maneuver around them.
NASA and the National Institutes of Health, NIH, have a joint 3-dimensional culturing project
for Lyme disease bacteria using microgravity chambers, which mimic conditions in space and in
the human body. The NASA official in charge of the project spoke at the last LDA conference.
As early as 1993, US Senator Edward Kennedy held hearings in Washington, DC focusing on
the problems with the disease and the resultant political problems created for treating physicians.
More recently at the federal level, congressional members commissioned a General Accounting
Office (GAO) investigation of government agency funding of Lyme disease studies. In 2002, the
US Senate passed legislation (S 969) that would provide $50M over five years for research for a
diagnostic test, and for prevention, and education. Pennsylvania Senator Rick Santorum worked
closely with Connecticut Senator Dodd in the passage of this bill, and the LDA was heavily
involved in that process. Unfortunately, the House did not review the bill before the session
ended, so the bill died. It will be reintroduced into congress again this session.
Cases of Lyme disease that are reported from each state to the Centers for Disease Control &
Prevention, CDC, must meet the CDC surveillance criteria. The reporting system itself creates
several problems, the first being the actual number of Lyme cases is estimated to be 10 times
higher than reported cases. In the year 2000, nationally reported case numbers rose 8% with
17,730 cases reported, which equals 177,300 actual new cases for the year 2000. New York,
Connecticut, Pennsylvania and New Jersey, respectively, are the top four states in the country for
Lyme disease. To date, Pennsylvania has reported 2,848 Lyme cases in the year 2002, which is
about 20,848 actual cases. Only four PA counties had no reported cases from 1999-2000, and
Chester and Cameron Counties had the highest incidences. Northumberland County where we
are tonight is endemic for Lyme (two cases acquired or infected vector present) and is in the top
16% of counties in PA for reported Lyme disease cases (11/67).
Another problem occurs despite a CDC warning on its website which states “This surveillance
case definition was developed for national reporting of Lyme disease; it is not appropriate for
clinical diagnosis.” Many physicians still mistakenly diagnose based on the CDC case definition.
The surveillance definition states that one must have either an EM rash or positive serology plus
major system involvement. Studies have shown that the EM rash appears less than 50% of the
time, and that other types of rashes may appear, or there may be no rash at all. Lyme disease tests
!antibody response tests such as ELISA and Western Blot can be negative when!underActivities Regarding Lyme Disease and Other Tick-borne Diseases, US Army
the victim has Lyme disease. Many insurance companies often do not accept doctor-prescribed
testing such as PCR, which actually tests for the Lyme bacteria, although PCR is accepted for
other diseases such as HIV, hepatitis, and TB.
Insurance companies often use the CDC surveillance criteria for reimbursement determination.
They may also limit treatment reimbursement to four weeks and substitute orals for IV.
Therefore, treating physicians have a dilemma: treating sick patients who do not meet the
criteria. Privately, several doctors have revealed that their insurance carriers strongly suggested
they either leave the plan or stop treating Lyme patients long term. A few continue to treat, some
refer their patients to long-term treating physicians, while others, fearing reprisals or facing
economic hardship, stop seeing Lyme patients.
An insurance company letter to a New Jersey patient states: “Unfortunately, a number of
unscrupulous practitioners in this and neighboring states have held themselves out as experts in
the treatment of Lyme disease. These individuals have subjected patients to improper diagnoses,
excessive treatments, inordinately long courses of intravenous therapy, and other activities not
supported by science or generally accepted standards of medical practice. Because our
organization has been appropriately vigilant and aggressive in dealing with certain practitioners,
they have chosen to leave our network.”
At issue nationally to patients and doctors is the volume of complaints by medical boards against
these treating physicians who already constitute a very small number overall. To address the
Lyme disease situation in New Jersey, in 1993, Congressman Christopher Smith, now Veterans’
Committee Chair for the US House of Representatives, held a public Congressional Lyme forum
in New Jersey. At LDAs request two years ago, Congressman Smith’s office met with the NJ
State Board of Medical Examiners, followed by an LDA meeting with the Examiners to discuss
harassment by the licensing board.
State hearings on Lyme disease are increasing. Attorney General Richard Blumenthal held
Connecticut hearings where he concluded that Lyme is a scientific controversy and doctors
should be permitted to treat accordingly. The Texas state senate held hearings on Lyme and
“Direct[ed] the Texas Board of Medical Examiners (BME) to develop review guidelines for
doctors who provide medical care related to tick-borne illnesses.” New York Assembly Health
Care Committee held two hearings on the Lyme disease due to concerns about OPMC
harassment of treating physicians. A letter from Congressman Christopher Smith to the Health
Committee, states: “While it is the job of state boards of medical examiners to review complaints
logged against doctors and to take action when needed, a concern that was expressed in my state
was that some of the complaints were filed not by patients, by but insurance companies (and
entities associated with them) who did not want to pay for the costs associated with treating
Lyme patients under an aggressive antibiotic regimen. Using a state panel that is supposed to
investigate malpractice to help achieve financial gain is simply wrong.” A letter from U.S.
Congressman Joseph Pitts’ (PA) office to the same body states in part “We believe that Lyme
disease is a scientific controversy and, consequently, medical boards should not prosecute
physicians based on their treatment of this devastating illness.”
A resolution, which the LDA helped draft, resulted from those hearings and passed the NY State
Assembly last year. It states in part “Resolve That this legislative body pause in its deliberations
to request that insurance companies and the Office of Professional Medical Conduct cease and
desist from targeting physicians who fall on one side or the other of this controversy, until such
time as medical research and the medical community have determined the appropriate
parameters for the diagnosis and treatment of tick-borne illnesses.” A bill which would reform
the Office of Professional Medical Conduct in NY, OPMC, also passed the Assembly last year.
Both measures will probably be reintroduced this year.
The LDA was invited to testify before the Rhode Island Lyme Disease Commission last year.
As a result of the hearing, Rhode Island successfully passed a law which protects physicians
from harassment merely for treating Lyme disease patients. Additionally, the state was able to
negotiate an agreement with Blue Cross that helps patients with the disease receive long term
treatment for Lyme disease. Some bugs remain to be worked out in the agreement, and a Lyme
group in RI is currently working on that issue.
California, Massachusetts, Minnesota, Connecticut, New Jersey, and New York, have enacted or
introduced legislation addressing issues ranging from Lyme Advisory Councils to treatment and
tick control to mandatory teacher in-service for educators in New Jersey. The Connecticut law
(Managed Care Reform Bill #7032) enacted January 1, 2000, appears to be causing problems for
patients with Lyme disease. Getting treatment has become more difficult. The original bill was
crafted to enable patients to receive the appropriate treatment, unfortunately, unacceptable
language changes were inserted before passage.
LDA has advocated a regional approach to the Lyme problem and has met in Connecticut with
State Attorney General Richard Blumenthal and Commissioner of Health Joxel Garcia, in New
Jersey with Senior Assistant Health Commissioner Blumenstock, and in Rhode Island with State
Health Director Pat Nolan. In New York, LDA has met with representatives from the State
Department of Health, Office of Professional Medical Conduct, and Governor Patakai’s office.
Here in Pennsylvania, we spoke to the Pennsylvania House of Representatives majority caucus.
Last year, I traveled throughout California for two weeks speaking about Lyme disease to
doctors, patients, advocates, and officials. I had the opportunity to address the newly created
California Lyme Advisory Council. I told them that the problems I heard in California mimicked
those of the east coast 5-6 years ago: a blindness to the fact that Lyme and other TBD’s exist and
are mentally and physically crippling thousands of people. I suggested that they could learn
from what had happened here in the east. What I did not say was that many in the east need to
open their eyes and their minds to the devastation Lyme produces for patients and families alike.
Last fall, Congressman Christopher Smith hosted a meeting for the LDA in Washington, DC
with the military. There, several doctors presented data to about a dozen military officials
supporting the persistence of the disease. The reason for the meeting is the LDA has received
reports from the military and their families about not being able to receive appropriate treatment
for the disease. The officials did admit they had similar treating problems inside as we were
having out outside. Subsequently, we have had communications with some of the officials.
An issue with TBDs that has come to the forefront is how they affect the blood supply. New Red
Cross blood donor guidelines state “Accept persons with Lyme disease if they were treated, the
disease resolved and at least one year has passed. Those with chronic Lyme disease are not
eligible to donate blood.” Individuals who had babesiosis are also prohibited from giving blood.
The American Society of Clinical Pathologists (ASCP) blood donor guidelines state
“serious illness,” defer indefinitely babesiosis and Lyme disease. In their April 1999 report to
CHPPM expressed its concern about the blood supply and tick-borne illness, mentioning
Ehrlichiosis and possibly Rocky Mountain spotted fever as having been transferred through
blood transfusions. Several studies in peer review discuss the actual transmission of babesiosis
through the blood supply.
Lyme disease is here, there, everywhere, and we had better begin to take responsibility for the
implications of that fact. We have been contacted by Siberian researchers seriously studying the
disease there, South American researchers looking for help, and a neurologist studying the
neurological manifestations of the disease in China. I have heard of people getting the disease
from infected ticks in the desert. This should send alarm bells to the thinking individual that
Lyme disease is a vastly underrated threat to all who inhabit this ever-shrinking planet. By the
time we decide whose backyard this disease is really in and freely allow doctors to practice
medicine without interference, we will have maimed, crippled, and killed tens of thousands
more, many of them our children. Thank you.
This speech is dedicated with love to C.S., 7 weeks from graduation, who has inspired me with her tenacity, positive attitude, and commitment to succeed and live life to the fullest despite all the obstacles thrown in her path.
To: Senator Santorum, Mr. Mayor, other elected officials or their representatives, and especially, the Lyme community
One hundred thirty seven years ago, two conflicting armies met here for a decisive battle considered to be the turning point in the Civil War. Later that same year, Abraham Lincoln dedicated this battlefield to those who sacrificed themselves in that war. That war was about personal freedom.
Today, it is not a coincidence that we have come from across the country and assembled here in Gettysburg. We have fought our own kind of war, many for more than a decade. Like the Civil War, we as a people are divided, state against state, community against community, family member against family member, doctor against doctor. Each carries the banner of righteousness. While the sides battle, the victims drop.
We are the only ones who can uncover this truth, those of us who have lived in its shadow for so long. We must drag it out of the shadows and into the sunlight for all to see. What is this truth? This truth is that Lyme disease is a serious illness, an illness which can be carried by several types of ticks but is predominantly transmitted by an animal the size of a poppy seed. The infected tick is found in great abundance here in Pennsylvania, a fact that has made PA 3rd in the nation in Lyme cases. That little but mighty animal, the tick, has caused us great harm, but it is an animal with no ability to reason. The infected tick bites us to survive, the bacteria enters us to survive. There is no reasoning there, no malice intended.
Fortunately, our officials in NJ and PA have been responsive to our plea for help. Congressman Christopher Smith has written and introduced the Lyme Disease Initiative 1999 in the House, and Senator Santorum in the Senate. The bill will provide $125 million for Lyme disease research. The prioritized goals are a sensitive and specific test, examination of the Centers for Disease Control surveillance criteria for Lyme, physician education, the role of other tick borne diseases, and a reduction of disease in the ten highest states. Monies would go to the CDC, NIH, DoD, DoA, and DoI. You must understand that government money for Lyme has been spent in the past, and without this bill, will continue to be spent without input from the Lyme community. Under this bill, for the first time, the Lyme community will have some influence as to how Lyme money is spent. We can try to get more monies awarded to credible individuals such as Dr. Brian Fallon, Columbia University, who just received a $4.7 million grant from the NIH for a brain imaging treatment study.
With this measure, the United States will be leading the way in this worldwide epidemic. It will provide protection for our doctors who will be able to treat in a friendlier climate. It will give us leverage with insurance companies who have denied us coverage. It will encourage other doctors to come out of the shadows and treat. It will force school districts to recognize that the needs of our children are serious, and most importantly, it may save your life or the lives of your family and friends.
Thank you and may you, find health and peace.
VACCINE POSITION PAPER * (There are currently no human vacciens on the market in the US. This applied to the vaccine LymeRix which was withdrawn by the manufacturer citing poor sales).
The Association recognizes the need for a safe effective vaccine against Lyme Disease. Several pharmaceutical companies have developed vaccines that are going through the FDA’s vaccine approval process. One has been FDA approved.*
The Association does not recommend for or against products, including the vaccine, used for the treatment or prevention of Lyme disease. An individual and his/her doctor need to make the decision whether or not to receive the vaccine.
Several questions about the vaccine:
· Since there is no effective test for active Lyme, what happens to individuals who have active Lyme disease and receive the vaccine?
· Since the vaccine is effective against certain strains of the Lyme bacteria, Borrelia burgdorferi, what happens if someone is infected with a different strain?
· What happens to individuals who receive the vaccine and become vaccine failures and contract Lyme? After receiving the vaccine, they will now have a positive test for Lyme. Will doctors know enough about the vaccine effects on LD testing to diagnose Lyme, and will insurance companies pay for treatment, or will the record of the vaccine and subsequent positive test prevent diagnosis and treatment?
· Since having had Lyme disease itself does not confer immunity, can one conclude that a positive titer means immunity to the disease? Are positive titer and conference of immunity the same thing?
· What tests have been done to determine the length of protection of the vaccine beyond 2 years?
· In the vaccine trials, people were not challenged with the disease; they were just monitored to see if they came down with it. What happens if someone actually is infected?
· Bacteria inside a tick that is feeding on a vaccinated animal are mostly destroyed. Can the remainder enter the human body and produce disease?
· Some researchers have found that OspA may trigger an autoimmune arthritis in certain susceptible people. Since this vaccine is OspA based, will getting the vaccine produce arthritis in some otherwise healthy individuals?
Revised: 5/19/98, 2/16/99
[*Note: This vaccine, LymeRix, was withdrawn from the market by manufacturer on Feb. 25, 2002. Currently, there are no vaccines on the market for humans]
Lyme Disease and the Schools 1998 Howell High School Pat Smith
Between Jan 1, 1996 and December 31, 1997, NJ had almost 4000 newly reported cases of LD. These cases are only the ones that fit the Centers for Disease Control, CDC, criteria for surveillance. Many more people were actually diagnosed by physicians with estimates from some medical professionals indicating that the 4,000 reported cases represent only 1/10 the actual cases in NJ. NJ has traditionally ranked either third or fourth in the nation for reported LD cases, many of which are children.
When children develop chronic Lyme, they are not only fighting disease, but also they and their parents must fight to get a proper education. Numerous school districts are unaware of the problems of LD and its potential psychiatric manifestations. Therefore, instead of getting proper treatment for the disease causing the symptoms, the children are being ignored, punished, or ostracized. Sometimes children are getting improperly classified or not classified at all because some individuals think Lyme is not a serious disease.
In 1992, I prepared and presented to Congressman Smith, the CDC, and the NIH, National Institutes of Health, a 9 district school study showing the impact of Lyme disease on children. As a result of my study, the CDC came to NJ and studied Lyme in 5 of those 9 Monmouth and Ocean districts. This Oct. 1992 CDC study of 64 students showed that the median duration of illness at the time of interview was 363 days, and the mean number of school days missed because the child was too ill to attend was 103 days (with a range of 2 to 548 days). The median duration of home instruction was 98 days, with a range of 5 to 792 days.
For several years, I have been working with districts statewide training teachers and acting as an advocate in IEP meetings for children with Lyme. This is the fifth statewide school conference the LDANJ has hosted in NJ.
Schools usually either classify children with Lyme as chronically ill or they develop 504 plans under federal legislation. Classification costs the district a lot more money, however, they do receive some state aid for that. 504 students do not usually generate additional aid for the district but the identification process is simpler. Districts need to understand that parents/students have similar rights under 504 as they do under the classification with an IEP, Individualized Education Program. Often, children exhibit behavior problems that are associated with Lyme disease and these go unrecognized by districts. At times, children are being improperly classified. For example, they have psychiatric or neurologic manifestations and they are labeled NI (neurologically impaired) or ED (emotionally disturbed) when perhaps a multiply handicapped classification which includes chronically ill might be necessary.
The new special education guidelines being developed could be a problem for children with Lyme whose designation is often neurologically impaired, since the definition of neurological impairment will be more strictly defined to agree with federal guidelines.
Children are identified with ADD, attention deficit disorder, medicated for those symptoms, and no cause is ever sought. Districts need to carefully evaluate any child who has a history of Lyme and is experiencing neurologic, psychiatric, and attention deficit problems to ensure that the problems are not organically produced by Lyme disease.
Fluctuations in symptoms present another problem. Lyme symptoms can vary from day to day and even hour to hour. Children with LD on long term home instruction may need to have a school program which enables them to come to school when feeling well and receive home instruction when they are not. They should not have to wait 10 days or any set number of days to receive the home instruction after each absence. Flexibility must be written into the IEP or 504 plan.
The number of hours of home instruction needs to be adequate to provide a thorough and efficient education. Often, districts only provide 5 hours a week to a child, telling parents this is all they need to provide by law. Classified children may receive 10 hours of home instruction per week. 5 hours is certainly not adequate to provide a thorough and efficient education for children on long term home instruction. Specify the hours in the IEP or 504 plan.
August 6, 1993 Written Statement of Pat Smith, Wall Township, NJ I have two daughters, Michelle and Colleen, who suffer from Lyme disease. Colleen is a fifteen year old honor student who has been out of school for 3 years. She receives home instruction and is currently working feverishly over the summer to try and complete her freshman year. She has been experiencing seizure activity for a year and has abnormal EEG’s consistent with Lyme. During the temporal lobe seizures, which can last for 2-3 days, she initially experiences speech impairment and a paralysis of her legs, and throughout the seizure, she is withdrawn from reality and experiences mental confusion, paranoia, and emotional turmoil. In addition to the seizures, she has had arthritic, opthalmologic, dermatologic, and other neurologic and musculo-skeletal symptoms of Lyme. Colleen has had to give up most of her childhood because of Lyme Disease. She was a very athletic and musical child who has had to forego all her activities and has experienced weight gain and dramatic changes to her fife due to Lyme. In the past 3 years, she has had eye problems which have not allowed her to read for any extended period of time without violent headaches and/or distorted vision. Throughout these ordeals, she has maintained a positive attitude. Over the past 4 years, Colleen has had approximately 5 months of IV antibiotic treatment with several different drugs. For the past 2 years, she has been on oral antibiotics. The antibiotics have helped; when she was removed from them for an Michelle is twenty-four and has had Lyme disease since college. After oral antibiotic treatment, she suffered no symptoms for almost 3 years, then relapsed. She is chronically tired, has headaches and recurrent eye infections. Her current treatment regimen includes oral and opthalmic antibiotics. She continues to work, since Last year while serving on my local board of education, I prepared a preliminary report on how Lyme has affected nine New Jersey school districts. I presented this to the Centers for Disease Control and the National Institute of Health in Washington by invitation of my Congressman. As a result of the report, CDC sent Dr. David Dennis to New Jersey to complete a more in-depth report on the effects of the disease on school children. I worked with him and the New Jersey Department of Health to expedite the data gathering. Although I do not agree with some of the conclusions drawn by the CDC in its follow-up report, I believe the data collected speaks to the seriousness of the disease. There are a number of problems with the State and Federal public health response to Lyme that deserve Congressional scrutiny. The doctors currently underreport the number of Lyme disease cases, primarily because the CDC definition of the disease is an epidemiological one which has been inappropriately applied to diagnosis in clinical situations. Additionally, when these agencies had obtained useful data and case studies on Lyme, they applied the information toward focusing on one treatment complication of a particular antibiotic rather than focusing on the * The National Institute of Health (NIH) also possesses data, including tissue sam- * Jiles exhibiting spirochete survival after long-term antibiotic therapy, which it has * In conclusion, I urge serious consideration be given to the testimony of physicians such as Dr. Burrascano who treat hundreds of chronic Lyme patients and are knowledgeable about the variability of symptoms and the survival of the spirochete even after extensive antibiotic therapy. Lyme has deprived children such as my daughter of their activities, friends, school and of their childhood; for others, it has taken their lives. You have the ability to stop this mmscriminate killer. Dont let our children down. Thank you. * This testimony may contain some missing segments which is beyone our control since it came from the Senate Hearing record with those omissions.
DC – US Senate Lyme Hearing, before Senator Edward Kennedy
extended time period, she relapsed. Her doctors include an internist, rheumatologist, opthalmologist, neurologist, MD nutritionist, and chiropractor.
her symptoms are not as severe as Colleen’s.
ailed to release to extramural researchers.
August 6, 1993
Written Statement of Pat Smith, Wall Township, NJ
I have two daughters, Michelle and Colleen, who suffer from Lyme disease. Colleen is a fifteen year old honor student who has been out of school for 3 years. She receives home instruction and is currently working feverishly over the summer to try and complete her freshman year. She has been experiencing seizure activity for a year and has abnormal EEG’s consistent with Lyme. During the temporal lobe seizures, which can last for 2-3 days, she initially experiences speech impairment and a paralysis of her legs, and throughout the seizure, she is withdrawn from reality and experiences mental confusion, paranoia, and emotional turmoil. In addition to the seizures, she has had arthritic, opthalmologic, dermatologic, and other neurologic and musculo-skeletal symptoms of Lyme.
Colleen has had to give up most of her childhood because of Lyme Disease. She was a very athletic and musical child who has had to forego all her activities and has experienced weight gain and dramatic changes to her fife due to Lyme. In the past 3 years, she has had eye problems which have not allowed her to read for any extended period of time without violent headaches and/or distorted vision. Throughout these ordeals, she has maintained a positive attitude.
Over the past 4 years, Colleen has had approximately 5 months of IV antibiotic treatment with several different drugs. For the past 2 years, she has been on oral antibiotics. The antibiotics have helped; when she was removed from them for an
Michelle is twenty-four and has had Lyme disease since college. After oral antibiotic treatment, she suffered no symptoms for almost 3 years, then relapsed. She is chronically tired, has headaches and recurrent eye infections. Her current treatment regimen includes oral and opthalmic antibiotics. She continues to work, since
Last year while serving on my local board of education, I prepared a preliminary report on how Lyme has affected nine New Jersey school districts. I presented this to the Centers for Disease Control and the National Institute of Health in Washington by invitation of my Congressman. As a result of the report, CDC sent Dr. David Dennis to New Jersey to complete a more in-depth report on the effects of the disease on school children. I worked with him and the New Jersey Department of Health to expedite the data gathering. Although I do not agree with some of the conclusions drawn by the CDC in its follow-up report, I believe the data collected speaks to the seriousness of the disease.
There are a number of problems with the State and Federal public health response to Lyme that deserve Congressional scrutiny. The doctors currently underreport the number of Lyme disease cases, primarily because the CDC definition of the disease is an epidemiological one which has been inappropriately applied to diagnosis in clinical situations. Additionally, when these agencies had obtained useful data and case studies on Lyme, they applied the information toward focusing on one treatment complication of a particular antibiotic rather than focusing on the *
The National Institute of Health (NIH) also possesses data, including tissue sam- *
Jiles exhibiting spirochete survival after long-term antibiotic therapy, which it has *
In conclusion, I urge serious consideration be given to the testimony of physicians such as Dr. Burrascano who treat hundreds of chronic Lyme patients and are knowledgeable about the variability of symptoms and the survival of the spirochete even after extensive antibiotic therapy.
Lyme has deprived children such as my daughter of their activities, friends, school and of their childhood; for others, it has taken their lives. You have the ability to stop this mmscriminate killer. Dont let our children down. Thank you.
* This testimony may contain some missing segments which is beyone our control since it came from the Senate Hearing record with those omissions.