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1 VERBATIM PROCEEDINGS 
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STATE OF CONNECTICUT 
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DEPARTMENT OF PUBLIC HEALTH 
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PUBLIC HEARING 
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IN RE: 
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LYME DISEASE 
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23 JANUARY 29, 2004 

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1 . . .Verbatim proceedings of a 
2 Public Hearing of the State of Connecticut, 
3 Department of Public Health, In Re: Lyme Disease, 
4 held January 29, 2004 at 9:00 A.M., at the 
5 Legislative Office Building, 300 Capitol Avenue, 
6 Hartford, Connecticut. . . 
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12 ATTORNEY GENERAL RICHARD 
13 BLUMENTHAL: If I could have your attention? If I 
14 could have your attention? Welcome to everyone. 
15 Welcome to everyone in this room and I understand 
16 there are also some participants in other rooms. 
17 We're delighted to have you here, particularly so 
18 many of you. Obviously, your number demonstrates 
19 your interest and concern. And we're very, very 
20 pleased that all of you are here. 
21 Let me begin by thanking Dr. 

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1 Galvin and the Department of Public Health for their 
2 immense help, their energy and hard work in putting 
3 together this very, very significant forum and 
4 hearing. 
5 We are also grateful to the 
6 legislature for giving us this facility and to some 
7 of the legislators who will be joining us. One is 
8 already with us. State Representative Dolly Powers 
9 is here. At least I saw her a little bit earlier. 
10 And others will be joining us. I'll try to 
11 recognize them when they arrive. 
12 I'd also like to say that we 
13 welcome Congressional attendees. Representatives of 
14 our Congressional delegation are here from Senator 
15 Dodd's office, Anthony Householder from Senator 
16 Lieberman's office, Michelle Carpenter. Two of our 
17 other Congressmen are represented. Nancy Johnson is 
18 represented by Paul O'Sullivan and Congressman Shays 
19 by Brenda Kupchick. 
20 And I would like to say I 
21 understand that we have with us the person who was 

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1 first diagnosed with Lyme Disease in the state of 
2 Connecticut, Polly Murray. Welcome to you. And 
3 thank you for being with us. 
4 (APPLAUSE) 
5 ATTORNEY GENERAL BLUMENTHAL: That 
6 certainly is a somewhat dubious distinction. But it 
7 is a mark of courage and conviction for you to be 
8 here. And we welcome you and all of you who have 
9 the courage, bravery, fortitude, perseverance to be 
10 with us and to talk publicly about a disease that is 
11 pernicious, insidious and immensely destructive, 
12 costly to our state, society and particularly to our 
13 children. 
14 I don't have lengthy remarks to 
15 begin this hearing. I'm going to ask Dr. Galvin a 
16 few words, if he'd like to remark. But I just want 
17 to say that we're here because even in the coldest 
18 weather, we simply cannot rest or be complacent. 
19 The ticks that carry this disease may be resting 
20 under the snow. But we have no reason to in any way 
21 rest in our efforts to educate and warn the public 

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1 and to try to improve diagnosis and reporting. 
2 So, in addition to the general 
3 concern about Lyme Disease, about improving 
4 education and awareness throughout the state, I 
5 think there are two specific objectives today. And 
6 they are to eliminate the common use of excessively 
7 restrictive Federal reporting criteria to diagnose 
8 and treat Lyme Disease and, second, to correct the 
9 under-counting of Lyme Disease cases so that we can 
10 understand how widespread and severe this disease 
11 really is. On the one hand -- 
12 (APPLAUSE) 
13 ATTORNEY GENERAL BLUMENTHAL: On 
14 the one hand, under-diagnosis of Lyme Disease 
15 because of excessive reliance on restrictive 
16 criteria and under-reporting of Lyme Disease cases 
17 due to lack of funds or lack of interest on the part 
18 of relevant agencies. 
19 And that will be the focus as we 
20 go through the day, under-diagnosis and 
21 under-counting. And, again, we will have with us 

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1 some extraordinary scientific talent, some people 
2 who have suffered from this disease who have come 
3 forward very bravely and articulately in the past 
4 and now again today, and then some of the government 
5 officials who are responsible for making policy in 
6 these areas. 
7 I want to thank particularly 
8 representatives at the NIH and the CDC for making 
9 the trip here after we very specifically asked them 
10 to do so. Obviously, they come from farther than 
11 many of our other guests. But we thank all of them 
12 for joining us. And I'm very excited and 
13 enthusiastic about the day's activities. 
14 And having said all that, if I can 
15 call on your, Dr. Galvin, to say a few words, if you 
16 have some remarks? 
17 COMMISSIONER J. ROBERT GALVIN: 
18 Thank you, sir. 
19 Just for those of you who don't 
20 know me, I'm Bob Galvin. I'm a newly appointed 
21 Commissioner of Health. I started on the 1st of 

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1 December. I come from a background of almost 40 
2 years in clinical medicine and have been a teacher 
3 of medical students for a good part of those 40 
4 years. I last saw patients on the 26th of November 
5 of this year. And my last patient was a gentleman 
6 who, on the 25th, sent me a small, clear plastic 
7 container with contained a tick, which I would 
8 identify as a Lyme tick, adult female. And sent me 
9 a -- accompanied it with a phone call saying he had 
10 a rash and he'd removed the tick. And, in fact, the 
11 last person I saw in my private practice was an 
12 individual who I believed had Lyme Disease but who 
13 would not be counted because he had not had enough 
14 time to develop markers in his blood for that 
15 particular disease. 
16 I would like to tell you that one 
17 of my real heroes in the medical world is a 
18 gentleman named John Enders, who is a West Hartford 
19 native. As I'm sure many of you know, John Enders 
20 received the Nobel Prize for measles vaccine. It 
21 was -- when I was in school in Boston and later on, 

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1 it was widely known that Enders had given away 
2 probably five or six other projects which resulted 
3 in Nobel Prizes or the equivalent of Nobel Prizes. 
4 And Enders, what always stuck in 
5 my mind was that he said that the really important 
6 thing was to be able to ask the right kind of 
7 questions so that you could get the answers. 
8 I would like to very briefly 
9 introduce Dr. Randy Nelson, who is a veterinarian on 
10 the staff of the Health Department. He also has a 
11 Master's Degree in public health and is an expert on 
12 diseases which are spread by contact with animals to 
13 human beings. 
14 Dr. Nelson and Tom Ryan, Dr. Tom 
15 Ryan, who is a jurist doctor and on the Attorney 
16 General's staff, Randy and Tom did a lot of the 
17 heavy lifting on this project. I'm very pleased to 
18 have a chance to work with the distinguished 
19 Attorney General and to bring these issues to light. 
20 I have no preconceived notion. 
21 There is nothing chiseled in concrete in my 

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1 department. And I have no -- I'm not bound by any 
2 agreements, past or present, which any of my 
3 predecessors have made. 
4 In case you are curious, the 
5 distinguished gentleman to our far right is Sam 
6 Crowley, who runs the Ledge Light Health District 
7 down near the shoreline and has extensive experience 
8 with Lyme surveillance within his -- the Waterford, 
9 Groton and Ledyard areas. And he's here to help me 
10 should I falter. 
11 I am basically here to listen. I 
12 have recruited a panel of physicians. Several of 
13 them told me, "You're not going to -- you might not 
14 like what I have to say. What would you like me to 
15 say?" They're going to say what they think. 
16 Particularly Dr. Sinatra, who is a fascinating 
17 gentleman and a holistic health person and who 
18 suffers from Lyme Disease. 
19 So no one has been coached by me. 
20 And I'm here to learn and to listen. And I have no 
21 pre-formed opinions. 

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1 ATTORNEY GENERAL BLUMENTHAL: 
2 Thank you, Dr. Galvin. 
3 (APPLAUSE) 
4 ATTORNEY GENERAL BLUMENTHAL: 
5 Thank you very much. I might just say people ask me 
6 all the time or say to you me all the time, "You 
7 might not like what I have to say." But they 
8 usually don't say, "What would you like me to say?" 
9 after they tell me that. So I can see the medical 
10 profession is considerably more delicate in its 
11 relationships with appointed or elected officials. 
12 And I want to thank particularly 
13 our medical group for coming today. I know how busy 
14 you are. 
15 Let's begin with the patients 
16 group, if we may. We're going to begin with five of 
17 the ten -- five of the nine patients and their 
18 representatives that we have today. And if I can 
19 call them forward? Josh Athenios, Caroline Baisley, 
20 Mary Anne Foley, Jude Anne Jones and Donna Lake. 
21 COMMISSIONER GALVIN: The 

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1 Reporter, Court Reporter, advises me that if, when 
2 you first speak, if you could identify yourself, 
3 then he'll be able to track the testimony. 
4 ATTORNEY GENERAL BLUMENTHAL: Just 
5 as a matter of the ground rules today, we have a 
6 very, very extensive list of people who are going to 
7 be speaking today. And so we're going to ask each 
8 of the beginning participants on the patients panel 
9 to take about five minutes. And Tom Ryan, who is on 
10 my staff, will be letting you know if you go beyond 
11 that amount of time. And we hope that there will 
12 also be time for questions on the part of Dr. Galvin 
13 and myself. 
14 So if we could ask Josh -- perhaps 
15 you could go first. 
16 MR. JOSHUA ATHENIOS: Hello. My 
17 name is Joshua Athenios and I have had Lyme Disease 
18 since the summer of 2000 when my mother picked off 
19 two ticks from my body, one behind my left knee and 
20 the other behind my right ear. I never got a 
21 bull's-eye rash. I started having joint pain in the 

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1 fall of 2000 and was told by my pediatrician I was 
2 having growing pains and fatigue due to my intense 
3 karate training. I got physically worse and worse 
4 as time progressed. I had extreme fatigue that was 
5 unrelieved by rest and sleep. My joints -- 
6 COMMISSIONER GALVIN: Josh, can 
7 you lean forward a little bit? I think some of the 
8 folks are having problems hearing you. 
9 MR. ATHENIOS: My joints -- 
10 COMMISSIONER GALVIN: Atta boy. 
11 MR. ATHENIOS: -- ached. I lost 
12 small patches of hair the size of quarters all over 
13 my head. I had headaches, could not concentrate in 
14 school, lost my short-term memory, could not play 
15 sports or take karate. I was dizzy, had chest pain 
16 and neck stiffness. For a short time, I could not 
17 walk. 
18 With my mother's persistence, I 
19 had a test for Lyme Disease in the spring of 2000. 
20 I had a positive Lyme ELISA. With my mother's 
21 persistence, I received three weeks of Doxycycline. 

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1 My symptoms improved and I thought I was well. 
2 In October 2001, I had a relapse 
3 of symptoms. I felt like I had the flu. I had 
4 extreme fatigue. I wanted to sleep but had a hard 
5 time doing so. I was weak and my joints, knees, hips 
6 all ached. My joint pain got to the point that I 
7 could not walk. 
8 I came home from school one day 
9 and was in the worst pain of my life. I was unable 
10 to stand on my own two feet. My mom rushed me to 
11 the emergency room. There was no parking close to 
12 the hospital. So my mom had to park and carry me 
13 in. They gave me a wheelchair. 
14 The doctors at the hospital 
15 diagnosed me with joint complications due to the 
16 flu. They fit me for crutches at the hospital and 
17 told me I would be better in about three days. 
18 Three days passed and I was not 
19 better, but worse. My mom sent me to school with my 
20 crutches. I could not finish my school work or play 
21 with my friends. I was in extreme pain day and 

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1 night. I was on several pain pills that did not 
2 relieve my pain but only made me feel worse and gave 
3 me stomachaches. 
4 At this point, I looked as sick as 
5 I felt. Many classmates asked me what was wrong and 
6 if I had cancer. I did not know that Lyme Disease 
7 could lay dormant in the body. At recess, I was on 
8 crutches and a boy asked me what my symptoms were 
9 and I told him. And he gave me a piece of paper 
10 with a number on it and told me it sounded like I 
11 still had Lyme Disease. He told me to call his 
12 father. I went home and gave my mom the number. 
13 The next night, the boy's father ended up calling my 
14 house. 
15 Our pediatrician told my mom that 
16 I could not have Lyme Disease because I was already 
17 treated for it for three or four weeks. I had more 
18 blood tests that came up positive for Lyme. I was 
19 sent to a rheumatologist at the Children's Hospital. 
20 He looked at me for about 60 seconds, sent me for 
21 x-rays. He ignored my positive Lyme test and 

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1 diagnosed me with arthritis. He told my mom it 
2 would be a long time before I would walk without my 
3 crutches. He told my mom to call the office and 
4 schedule an appointment to have an operation in two 
5 weeks to have my hips drained. My mother refused 
6 the rheumatologist's diagnosis to pursue surgery. 
7 I then went to an infectious 
8 disease specialist. He told me that my symptoms 
9 were all in my head. He told me to tell my mom the 
10 truth, that I was making it up so I didn't have to 
11 go to school. I was in the worst physical health I 
12 had ever been in. It hurt for me to talk. And he 
13 told me to stop pretending. He told my mom I did 
14 not have Lyme Disease and that the antibiotics would 
15 not work. I was misdiagnosed again and my positive 
16 Lyme test was overlooked. 
17 My parents could not find a doctor 
18 to treat me for Lyme that the insurance covered. So 
19 they took me to Dr. Charles Ray Jones, a 
20 Lyme-knowledgeable doctor. They paid out of pocket 
21 for my treatment. Dr. Jones took the time to listen 

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1 to me and cared enough to diagnose me properly. I 
2 was given Amoxicillin and Zithromax and was walking 
3 without crutches after three weeks. 
4 I continued my treatment for nine 
5 months and had significant improvement in my health. 
6 I have been off all medication for over a year and 
7 a half. I am taking karate classes again and I'm 
8 studying for my black belt. I am thankful to God 
9 for my health and thankful for the responsible 
10 physicians who take the time to listen to their 
11 patients even if the patient is a kid. 
12 I want to thank Attorney General 
13 Richard Blumenthal and Commissioner of Health Robert 
14 Galvin for this opportunity to tell my story. I 
15 would also like to thank Mr. and Mrs. Randy Sikes, 
16 Mr. Chris Montes and Sam Montes for helping me 
17 during my illness. 
18 I hope this can shed some light on 
19 the disease so other kids and adults don't have to 
20 suffer like I did. 
21 Thank you. 

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1 (APPLAUSE) 
2 ATTORNEY GENERAL BLUMENTHAL: 
3 Thank you very much, Josh. Very well said. 
4 If we could now hear from Caroline 
5 Baisley? 
6 MS. CAROLINE BAISLEY: Good 
7 morning. 
8 ATTORNEY GENERAL BLUMENTHAL: Good 
9 morning. 
10 MS. BAISLEY: My name is Caroline 
11 Baisley. I'm the Director of Health in Greenwich, 
12 Connecticut. I have served the Town of Greenwich as 
13 a key member of the Department of Health for 23 
14 years. Over the past six years, I have held the 
15 title of Director of Health. I'm responsible to 
16 protect the health and well-being of the town's 
17 population. 
18 When I received a call from the 
19 Attorney General's Office inquiring about my 
20 interest in participating today, I was honored. 
21 After agreeing to be a part of the patient panel on 

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1 the agenda, I realized that my role would be quite 
2 different. As a victim of LD, I would be offering 
3 information from a patient's perspective and not 
4 from a Public Health official's point of view. 
5 Although I felt comfortable in sharing my story as 
6 an LD patient, I found it difficult as I began to 
7 assemble my experience. In addition, I found it 
8 equally difficult to separate myself as an ailing 
9 patient with disease and the leading health 
10 authority that strives to protect the public's 
11 health against the disease. 
12 Nevertheless, my story of pain and 
13 suffering is similar to all the other patients that 
14 struggle in their fight against this spirochete 
15 which causes the systemic illness. 
16 As a woman in her early 40's, I 
17 was grateful to have my health, a good job, close 
18 friends and a loving family. In 1999, really 
19 becoming ill, I came down with a bug and was out 
20 sick from work for five days. After receiving 
21 treatment from my primary physician, I returned to 

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1 work and never gave my illness a second thought. 
2 Although everything seemed to be going well, my life 
3 -- my life -- oof. Is this still on? My life was 
4 not free of stress and pressure. 
5 At work, it was the year that an 
6 unknown virus known as West Nile Virus emerged in 
7 the community. And at home, it was my failing 
8 elderly mother. It seemed that I was under much 
9 more stress than usual. 
10 The year 2000 came in with a bang. 
11 My mother passed away in January. And health 
12 officials throughout the state were preparing for 
13 the re-emergence of West Nile Virus. I didn't 
14 notice at the time, but I began to see an array of 
15 physicians for various symptoms. An ophthalmologist 
16 I visited since my eyesight became poor. My OB-GYN 
17 and primary physician were seen for unusual 
18 constipation and severe cramps. After full 
19 examination and no diagnosis, I was sent for the MRI 
20 and a colonoscopy. Both tests proved to be 
21 negative. And in the follow-up visit to my 

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1 physician, I was encouraged to eat more foods with 
2 fiber and to exercise. 
3 In the months to follow, I visited 
4 my dermatologist for skin blotches on my face and 
5 mild hives on my torso. After a battery of negative 
6 test results and unsuccessful attempts of 
7 prescription creams, the dermatologist suggested I 
8 see an allergist. 
9 As I recall, this was the first 
10 time I began to think about what was happening. 
11 Being consumed by work activities, I put off seeing 
12 the allergist. I had no known allergies and the 
13 hives seemed to disappear. 
14 In the mid-90's, I was diagnosed 
15 with a hearing impairment with an unknown cause. 
16 However, my hearing seemed to be getting much worse. 
17 In my daily activities, I was constantly requesting 
18 that a statement be repeated. My trip to the 
19 hearing doctor confirmed my suspicion. And two 
20 small hearing aids were purchased. I reluctantly 
21 wear only one in my left ear. 

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1 Without any warning, I woke up in 
2 the morning with hives from head to toe. I took 
3 over-the-counter antihistamine to get relief. The 
4 allergist conducted a complete review and prescribed 
5 medication for the hives should they return. All 
6 the tests conducted were negative. However, before 
7 long, the hives returned. But this time my face was 
8 swollen beyond belief. 
9 Although the prescribed medication 
10 suppressed the hives, Prednisone was needed to 
11 reduce the swelling in my face. I took this many, 
12 many times. 
13 By the end of this year, I had 
14 fallen ill once again, this time for eight days, not 
15 responding to the course of treatment set by my 
16 primary physician. I was given over-the-counter 
17 medications and was required to stay in bed until I 
18 got well. After two weeks, I returned to work. 
19 The year 2000 seemed no brighter. 
20 I began to see the allergist more frequently. And 
21 episodes of hives and -- the episodes of hives 

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1 increased and I received higher doses of prescribed 
2 medication. 
3 Although it seemed that I visited 
4 my primary physician less, I did begin to see a 
5 chiropractor for neck pain. Having slowed down in 
6 my physical activities, I did not know how I could 
7 have injured my neck. However, a series of x-rays 
8 identified a dislocated disk. Although I didn't 
9 feel like myself, I was much too busy with the 
10 aftermath of September 11 to think about it. I 
11 worked many long hours in the months to follow. So 
12 I became unaware of my declining condition. 
13 In 2002, the hives began appearing 
14 more regularly, until they stayed permanently. My 
15 face would now swell more often, closing my eyes and 
16 prohibiting me from driving. The allergist 
17 continued to conduct tests, but all were coming back 
18 negative. 
19 I began to experience chest pain 
20 and got very concerned. So I visited a 
21 cardiologist. Although not convinced that my signs 

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1 and symptoms were heart-related or that any other 
2 symptoms could be contributory, the cardiologist 
3 agreed to a cardio stress test. The results 
4 indicated that I was healthy but perhaps I was under 
5 too much stress at work. 
6 Continuing to see the chiropractor 
7 for neck pain for a short while longer, it seemed 
8 that the pain subsided. And although the medication 
9 that the allergist prescribed suppressed the hives 
10 daily, I became very concerned about the possible 
11 cause. It wasn't until the morning that my face on 
12 the right side exhibited a droopy look that I 
13 believed that something was seriously wrong with me. 
14 My body was obviously sending signs of its illness. 
15 I returned to my allergist, 
16 requesting that he look deeper into my problem. The 
17 blood work performed isolated a C-4 deficiency that 
18 could be associated with an autoimmune disease. I 
19 visited my primary physician and an infectious 
20 disease specialist. All tests that they conducted 
21 were negative. 

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1 MR. RYAN: Time. 
2 MS. BAISLEY: In closing, I would 
3 like to say -- actually, the most important part of 
4 this is that the hives came back. They stayed. I 
5 did take many medications to get those hives to be 
6 -- suppressed. The most important thin is that my 
7 memory started to be lost. I directed my efforts 
8 towards work. And I could not -- I was 
9 disinterested. My physical -- I was physically 
10 tired. I was depressed. I saw a psychiatrist who 
11 became a very good friend of mine. And luckily, 
12 through his perseverance, he insisted upon that I go 
13 and see a doctor who actually would treat Lyme 
14 Disease patients because he knew of the severity 
15 that -- that came with the spirochetes that -- from 
16 Syphilis. And, therefore, he realized the damage 
17 that would be done to my brain. 
18 The bottom line is this. I would 
19 encourage all Lyme Disease patients to bear 
20 together, to give each one strength, to continue to 
21 support their doctors and their efforts to treat. I 

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1 was very, very supportive -- my family was very, 
2 very supportive. And I'm very thankful for my 
3 doctor, Dr. Katz, who treated me aggressively. Once 
4 I received antibiotic intravenous treatment, which I 
5 am currently on, my fogginess in my brain cleared 
6 up. I became cognitively more alert. And the PhD 
7 candidate that I once was I hope to be once again. 
8 Because this disease -- I'll be honest with you -- 
9 it robs the brain, the brain of a very talented 
10 person, of our children, the biggest assets in our 
11 nation and in our state. 
12 And I think that -- I don't know. 
13 There's nothing more we can say, I can say. It's 
14 that we need your support. 
15 ATTORNEY GENERAL BLUMENTHAL: 
16 Thank you very much. 
17 (APPLAUSE) 
18 COMMISSIONER GALVIN: I must say 
19 that, Caroline, that in my work, for a long time, 
20 nine years, I was the Medical Director for Long-Term 
21 Disability for Aetna Life & Casualty. And I saw a 

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1 considerable number of people who were as bright and 
2 talented as you are who had your type of 
3 symptomatology who never worked again productively. 
4 ATTORNEY GENERAL BLUMENTHAL: But 
5 I'm glad that you are working productively in 
6 Greenwich. Thank you for being here. 
7 (APPLAUSE) 
8 ATTORNEY GENERAL BLUMENTHAL: Mary 
9 Anne Foley? 
10 MS. MARY ANNE FOLEY: My name is 
11 Mary Anne Foley and I'm from Wilton, Connecticut. 
12 My experience with Lyme Disease is both personal and 
13 professional. Personally, every member of my 
14 immediate family has at one time been diagnosed for 
15 Lyme Disease and for three members it has had 
16 devastating impact. Professionally, I am a market 
17 researcher by trade. And colleagues of mine at 
18 Millard Brown in Fairfield conducted a study in 2001 
19 looking at the household and individual incidence of 
20 Lyme in Wilton, Ridgefield and Newtown. 
21 The results, conducted among a 

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1 total of 1200 households, revealed four out of ten 
2 households have a member with 
3 diagnosed-by-a-physician Lyme Disease. Of those, 
4 two-thirds present with a positive blood test, 
5 two-thirds have a rash or bull's eye and virtually 
6 all were treated with antibiotics. 
7 On an individual basis, the study 
8 found that roughly one out of five people in these 
9 areas has been diagnosed by a physician with Lyme 
10 Disease. Of these, almost one quarter saying they 
11 have lingering, persistent health problems. That 
12 equates to about five percent of the total 
13 population in this area suffering from lingering 
14 effects of Lyme Disease. 
15 Is there convergent data? 
16 Anecdotally, my pediatrician in Wilton has told me 
17 that he has about three percent of his practice with 
18 lingering Lyme Disease. At the Cider Mill School in 
19 Wilton, when I was at one of my daughter's 504 
20 meetings, I learned from the senior counselor there 
21 that roughly three percent of that school's study 

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1 body had some accommodation, either in 504 or IEP, 
2 due to lingering effects of Lyme Disease. We have 
3 an out-of-control school budget due to Special 
4 Education needs. I think we need to look at what 
5 Lyme is contributing to that. 
6 On an area-wide basis, it's well 
7 known that Lyme is an issue. A survey in New Canaan 
8 in November of 2000 published that the majority of 
9 residents, 52 percent, feel that Lyme Disease is a 
10 Very Serious problem and another 34 percent 
11 suggesting it is a Somewhat Serious problem. That 
12 actually changes the way these people live. Almost 
13 nine out of ten constantly check themselves for 
14 ticks after being outdoors, 68 percent use insect 
15 repellant and over half avoid wooded or grassy areas 
16 to avoid ticks. 
17 Living in Wilton, I am all too 
18 aware of how big a problem this is, probably more 
19 aware than most. I have three daughters. All have 
20 been diagnosed with Lyme. For my middle daughter, 
21 Kristen, all this has ever involved is a course of 

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1 antibiotics and then she returned to a normal life. 
2 Laureen, my eldest, and Samantha, my youngest, are 
3 not nearly so lucky. 
4 Laureen missed most of high 
5 school. She is currently a freshman at Fairfield 
6 University. While she was not diagnosed with Lyme 
7 until she was 14 years old, her medical records 
8 suggest she actually contracted it the summer she 
9 turned four. While she would be sick on and off for 
10 years -- and much like the other people here, I was 
11 told by varying doctors it was a million different 
12 things. It was not until she reached high school 
13 that she would start missing up to three months of 
14 school at a time. 
15 Similarly, Samantha, my youngest, 
16 missed almost 70 days of sixth grade last year. My 
17 husband was one of the first employees in his 
18 business at General Electric to go out on short-term 
19 disability leave due to Lyme. 
20 Because of my children's 
21 condition, I receive my calls from families who are 

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1 facing the same challenges, particularly for their 
2 children. While the symptoms so often include 
3 headache, fatigue, depression and joint pain, what 
4 most people don't recognize is how alienating and 
5 lonely this disease is. 
6 For too many children, there are 
7 extended absences from school. Having friends is so 
8 often a function of shared experience. And for the 
9 kids with Lyme Disease who are missing school and 
10 are staying home, they are sharing nothing. 
11 Personally, I've seen far too many 
12 heartbreaks. Missing your surprise 16th birthday 
13 party because you spent the day in the emergency 
14 room. Losing positions on teams, in plays, at the 
15 lunch table because you're not able to be there. 
16 Being told by your peers that you must be too stupid 
17 to attend school. 
18 Further, school policy prohibits 
19 participation in extracurricular activity when you 
20 are not in school. For kids with Lyme who have 
21 periods of illness are interspersed with days they 

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1 are relatively well, this policy is devastating. 
2 For us parents, there is the 
3 emotional cost and the real cost. There are 
4 insurance battles, tutors and potential lost income 
5 from either the stigma of Lyme -- and that is real 
6 -- or from not being able to work because you are 
7 home with sick children. 
8 At one point, my pediatrician, a 
9 wonderful man, spent over an hour with my oldest 
10 daughter, comforting her, explaining the illness was 
11 not in her head, that the taunts and the suspicions 
12 of people around her were their problem and asking 
13 her to please recognize that it was their problem 
14 and not hers. And he said to her, "Eventually, 
15 things will improve." 
16 Things have improved because we've 
17 been diligent in getting medical help and emotional 
18 support in as many places as we can find it. This 
19 is a disease where you must be an active participant 
20 in your own health, seeking out various treatments, 
21 weighing your options and understanding how much 

33 
1 trust you can place in each source. 
2 As a family, our health is 
3 improving, largely because we have reached a new 
4 level of treatment. And what I believe is equally, 
5 if not more, important, we purchased a home in 
6 Florida. Why? Sunlight. I had much anecdotal 
7 evidence from fellow Lyme combatants which I added 
8 to Internet and literature searches suggesting 
9 sunlight has a very real impact on health, more than 
10 most people realize. This was encapsulated in a 
11 Readers Digest article in June of 2003. And I quote 
12 a medical professor -- 
13 MR. RYAN: Time. 
14 MS. FOLEY: -- from Boston 
15 University who says "There is an unrecognized 
16 epidemic of Vitamin D deficiency." 
17 My children have improved. And 
18 while we are a small sample, there is clearly 
19 something here. Living half of each year is a 
20 pretty drastic response. But right now this has been 
21 the most lasting solution I have found for a problem 

34 
1 that literally plagues us. We need help on every 
2 level. And the best way to bring that about is to 
3 generate shared learning in a positive, 
4 non-threatening environment. 
5 And I am very grateful to you for 
6 holding this hearing. Thank you. 
7 (APPLAUSE) 
8 ATTORNEY GENERAL BLUMENTHAL: Jude 
9 Anne Jones? 
10 MS. JUDE ANNE JONES: Hello. My 
11 name is Jude Anne Jones. I've come here today in an 
12 attempt to share information that I've experienced 
13 and lived and that might help in the ongoing 
14 questions, research and considerations of Lyme 
15 Disease. 
16 I am a Connecticut native. I was 
17 born and raised in Westport. I come from a large 
18 family. I am the fifth of six children. I 
19 demonstrated from early childhood an extremely 
20 strong constitution. I never got sick and it was I 
21 who always resisted the illnesses some of my 

35 
1 siblings contracted. My mother deliberately exposed 
2 me to sisters who might have had measles or mumps 
3 and to no avail. Although diminutive in stature, I 
4 always possessed remarkable physical strength, as 
5 well as a natural athleticism. That was my greatest 
6 gift, my constitution. 
7 At age 5, 13, 18 or 21, one 
8 doesn't even think about one's constitution. I 
9 remember that adage I'd hear growing up, "With good 
10 health, you can do anything." 
11 After some reflection, I realize 
12 now that I started feeling sick probably around 1979 
13 or '80. I've always assumed that I had Lyme Disease 
14 for 15 years before I was diagnosed. But, in fact, 
15 it started earlier. Because I was treated for 
16 various infections, primarily sinus and skin, much 
17 of the symptoms were masked or tempered by short 
18 courses of Tetracycline. 
19 By the mid-1980's, I was 
20 constantly feeling unwell, flu-ey, arthritic. I had 
21 seen a physician in New York and had shown him this 

36 
1 rash on my chest that looked like a spider web. I 
2 remember his comment. "You just have a case of the 
3 crazies." He gave me an antihistamine. I thought, 
4 "You might be right." I certainly was stressed, as 
5 I was managing and designing for a 
6 multi-million-dollar corporation, trying to care for 
7 a dying aunt and commuting back and forth to 
8 Westport to care for my terminally ill mother. 
9 Adrenal and determination have 
10 been very good friends of mine. I'm not here to 
11 malign an individual or an institution. What's done 
12 is done. And nothing can erase what's happened. 
13 What I can say is that I experienced what is 
14 unfortunately not that uncommon. I was not 
15 diagnosed with Lyme Disease until I went into an 
16 emergency room having a mini-stroke. I had suffered 
17 with an excruciating headache for more than a week. 
18 My blood pressure was 220 over 110. And I was 
19 walking crookedly. 
20 Prior to that trip in November of 
21 '98 to the emergency room, I had been suffering from 

37 
1 some form of meningitis for three years. I was told 
2 it was aseptic. I had constant fever, sore joints, 
3 sore neck and generally was very sick. This had 
4 been preceded by seizures in 1992 and '93 and 
5 abnormal MRI and CAT scans. 
6 I didn't have health insurance in 
7 1992 and '93. So I didn't pursue it. I had 
8 returned to Westport in 1987 to be my mother's 
9 full-time caretaker until she died. After her 
10 death, I remained in Westport. 
11 I had always attended to my own 
12 garden and, in 1998, was asked to oversee and design 
13 other people's properties. I will never forget the 
14 day when a young woman asked me to take care of her 
15 garden, as she had explained to me she had been so 
16 sick with Lyme Disease, the tick-borne disease, that 
17 she never wanted to garden again. And I remember 
18 thinking to myself, "Tick disease, how bad could 
19 that be?" I thought she was a little over the top 
20 in her reaction. How wrong I was. How doubly 
21 ironic, as I was already infected myself. 

38 
1 In 1989, I had a significant 
2 bull's eye in my right forearm, felt horrible, saw 
3 the doctor who dismissed my extremely stiff hand 
4 joints from overworking small muscles by weeding. 
5 It made sense to me. But I shouldn't have accepted 
6 it. 
7 This is the part for which I am 
8 responsible. As sick as I already was, I did not 
9 pursue it, didn't go back to that doctor or seek 
10 other opinions. Had it been someone I cared for, I 
11 would have insisted, pushed them to seek additional 
12 care and viewpoints. 
13 I've always been able to tough it 
14 out. After two operations, bouts of meningitis, 
15 explosive hypertension, fevers, a persistent 
16 infection, irrevocable damage to my central nervous 
17 system, the inability to work -- and I have worked 
18 since I was 14 -- the inability to drive on 
19 high-speed roads -- I cannot synchronize my brain 
20 and body. Problems with -- 
21 MR. RYAN: Time. 

39 
1 MS. JONES: -- cognitive 
2 functions. I am here as a representative of the 
3 extraordinarily profound impact this disease can 
4 have on a human. I am here because I would like to 
5 think that my experience might help prevent it from 
6 being someone else's experience. 
7 I am not in a wheelchair. I am 
8 not in a nursing home. I live by myself. I take 
9 care of myself. I struggle daily. I, frankly, 
10 credit my survival to date to two things; the 
11 physical constitution that I was born with, which 
12 provided me with the basic physical ability to keep 
13 fighting until it no longer could because it had 
14 been so destroyed by the insidious nature of Lyme 
15 Disease, and to one physician, my neurologist, Dr. 
16 Amiram Katz, who, through careful, professional and 
17 dedicated attention to me, diagnosed me with 
18 neurological Lyme Disease and helped champion my 
19 cause so that I could receive correct and 
20 comprehensive treatment in an attempt to get better. 
21 I thank you for the opportunity to 

40 
1 share this. 
2 ATTORNEY GENERAL BLUMENTHAL: 
3 Thank you. 
4 (APPLAUSE) 
5 ATTORNEY GENERAL BLUMENTHAL: 
6 Donna Lake. 
7 MS. DONNA LAKE: Good morning. I 
8 would like to thank Attorney General Richard 
9 Blumenthal and Commissioner Galvin for holding this 
10 hearing on Lyme Disease and giving me this 
11 opportunity. My name is Donna Lake. I was born and 
12 raised in Hartford, Connecticut. I've lived in 
13 Simsbury for 12 years. 
14 On June 6, 2003, I discovered an 
15 engorged deer tick on my abdomen. I was preparing 
16 for a pre-op physical prior to a surgery scheduled 
17 for June 20, 2003. I removed the tick, which I now 
18 know I removed improperly. I did not realize it was 
19 a tick. But I placed it in a Baggie and brought it 
20 to my appointment. 
21 When I was seen for my physical, I 

41 
1 presented my tick and the bite site, which was 
2 raised and inflamed. I expressed my concerns and my 
3 knowledge of Lyme Disease because my young Lab 
4 recently had Lyme. 
5 Living in Simsbury, a heavily 
6 wooded area, deer and bear being common to our 
7 neighborhood, I requested treatment so I could 
8 proceed with the carefully planned surgery, along 
9 with my juggling work schedule, as I am an 
10 independent contractor. 
11 I was given 200 milligrams of 
12 Doxycycline, the standard recommendation of the CDC. 
13 I then dropped my tick off at the Farmington Valley 
14 Health Department for testing. Seven days later, I 
15 developed a slight headache, neck ache and fatigue. 
16 Eleven days later, June 17, 2003, three days prior 
17 to my surgery, I had a severe headache, redness on 
18 my neck, arms and chest, along with fever, chills, 
19 light sensitivity, sore throat, confusion, severe 
20 fatigue and complete numbness on my left side. I 
21 phoned my doctor immediately. 

42 
1 I fully articulated my situation, 
2 although my thought process was slow. His response 
3 was, "Donna, just because Lyme Disease is the 
4 disease of the month, it does not mean you have it." 
5 I was shocked. 
6 I phoned my surgeon and explained 
7 everything to him. His response was, "Donna, you 
8 are in full-blown Lyme Disease. You have an 
9 infection in your system. I cannot perform your 
10 surgery." 
11 I was clinically diagnosed with 
12 Lyme Disease and treated on June 20, 2003. I was 
13 given a blood test. The result, three weeks later, 
14 based on recommendations by the CDC, negative. Six 
15 weeks later, I received a phone call from the 
16 Farmington Valley Health Department. They were 
17 concerned because my tick was positive and they 
18 recommended I seek medical attention immediately. 
19 Two days later, I received documentation on the 
20 tick. 
21 I was treated for two months. I 

43 
1 relapsed two weeks after treatment, experiencing the 
2 same symptoms. I was put back on medication. Each 
3 time starting the medication, I had a Herxheimer 
4 reaction. I had been taking medication for six 
5 months now. I am finally feeling 93 percent better 
6 and I have not had any Herxheimer reaction. My 
7 recovery has been slow, but I am one of the lucky 
8 ones. 
9 Having this complex disease has 
10 been a horrible learning experience at my own health 
11 expense. My treatment proves that in some cases 200 
12 milligrams of Doxycycline as a preventative, 21 days 
13 of antibiotic treatment, along with standard blood 
14 tests, is indeed ineffective. 
15 The disease is spreading rapidly 
16 here in Connecticut. The lack of knowledge, 
17 education, research and understanding of this 
18 disease is comparable to the Dark Ages. The need 
19 for recognition and proper care is severe. To 
20 ignore this, it would be a great travesty. After 
21 all, this disease is in our own back yards. 

44 
1 Thank you. 
2 ATTORNEY GENERAL BLUMENTHAL: 
3 Thank you. 
4 (APPLAUSE) 
5 ATTORNEY GENERAL BLUMENTHAL: I 
6 have just a couple of questions and then Dr. Galvin 
7 may have some. 
8 I want to just introduce again -- 
9 I mentioned earlier that Representative Dolly Powers 
10 is with us. She left the room earlier when I 
11 introduced her. But Representative Googins, Sonny 
12 Googins from the Hartford area, is also with us. 
13 And I don't see any other State Representatives or 
14 State Senators. But if you're here, please come 
15 forward. 
16 You mentioned, Ms. Lake, the CDC 
17 guidelines and that those guidelines did not 
18 indicate -- the application of those guidelines did 
19 not indicate the presence of Lyme Disease. But the 
20 testing of the tick did. 
21 Was anyone else among you told 

45 
1 about the CDC guidelines in the course of the 
2 misdiagnosis or lack of diagnosis of Lyme? 
3 MS. FOLEY: Yes. 
4 COMMISSIONER GALVIN: I see you 
5 nodding, Ms. Foley. 
6 MS. FOLEY: Yeah. In my husband's 
7 case. Peter, like Laureen, it took many years and 
8 many doctors to get diagnosed, like everyone. He's 
9 been through two courses of IV antibiotics. And he 
10 actually applied for Dr. Fallon's potential 
11 research. He still does not meet CDC requirements 
12 for Lyme Disease. This guy would be in a 
13 wheelchair, drooling, if he hadn't been treated. I 
14 am not exaggerating. 
15 ATTORNEY GENERAL BLUMENTHAL: So 
16 you were -- you were told that your husband did not 
17 meet the CDC guidelines. 
18 MS. FOLEY: Absolutely. That's 
19 right. 
20 ATTORNEY GENERAL BLUMENTHAL: I 
21 saw someone else nodding. Maybe Ms. Baisley? 

46 
1 MS. BAISLEY: As a Health 
2 Director, I was well aware of the CDC guideline. I 
3 didn't fully meet the guideline. However, my 
4 physician not only looked at my test results, which 
5 perhaps not enough physicians do, looked just a -- I 
6 mean he looked not just at the test results but he 
7 listened to me as a patient. He listened to what I 
8 was saying, what I was experiencing. And so, you 
9 know, that's very important to diagnose a patient. 
10 ATTORNEY GENERAL BLUMENTHAL: 
11 Anybody else have a comment on that aspect? 
12 A VOICE: There's somebody over 
13 there in that corner. 
14 ATTORNEY GENERAL BLUMENTHAL: 
15 Yeah. You know, we can't recognize members of the 
16 audience, unfortunately. We would welcome your 
17 comments later, either written or -- 
18 A VOICE: Same thing. 
19 ATTORNEY GENERAL BLUMENTHAL: -- 
20 oral. 
21 A VOICE: Six years misdiagnosed. 

47 
1 ATTORNEY GENERAL BLUMENTHAL: 
2 Thank you. And I apologize that we can't just open 
3 it as a kind of public forum. 
4 None of you, if I was listening -- 
5 if I caught everything you said, none of you 
6 mentioned the classic bull's eye rash. Am I -- did 
7 I miss something there? 
8 MS. JONES: No. I -- 
9 ATTORNEY GENERAL BLUMENTHAL: Ms. 
10 Jones? 
11 MS. JONES: I did have it. 
12 ATTORNEY GENERAL BLUMENTHAL: You 
13 had the rash? 
14 MS. JONES: I had the rash in 1979 
15 on my chest and it was not -- 
16 ATTORNEY GENERAL BLUMENTHAL: That 
17 was the -- that was what the doctor said -- how did 
18 he describe it? 
19 MS. JONES: He referred to it as 
20 "a case of the crazies". Now, this was in New York. 
21 And I'm not -- 

48 
1 ATTORNEY GENERAL BLUMENTHAL: The 
2 crazies? 
3 MS. JONES: "A case of the 
4 crazies". Then in 1989, I had it on -- the classic 
5 bull's eye on my arm. But I have to say -- so that 
6 was -- I probably had Lyme in all actuality from 
7 onset to formal diagnosis for 25 years. During that 
8 time, I never had a positive blood test. Never. 
9 And it was theory that when it's -- when one has it 
10 for that long a period of time, it skips over the 
11 spinal/cerebral border and lodges itself in the 
12 central nervous system, the brain. And 
13 spinal/cerebral fluid tests also were not always 
14 100-percent positive. There were other tests, Lyme 
15 antigen capture, which is a more sophisticated test 
16 that I can't really explain to you. PCR tests done 
17 on blood work which detects the actual DNA of the 
18 spirochete. However -- and I'm sure you'll get to 
19 this later. There is inaccuracies from one 
20 laboratory to another. And I actually had blood 
21 work drawn last March as part of the -- perhaps 

49 
1 getting into the National Institute of Health 
2 program. Two weeks later I had it drawn separately. 
3 The one drawn from the National Institutes of 
4 Health came back negative. Two weeks later, drawn 
5 by Dr. Katz's office and sent to a laboratory in New 
6 Jersey, it came back positive. So that's part of 
7 the conundrum. 
8 ATTORNEY GENERAL BLUMENTHAL: 
9 Thank you. And I -- again, I was listening. I may 
10 not have caught it. But I gather none of you 
11 remember actually being bitten by a tick. 
12 Ms. Lake, you found a tick. 
13 MS. LAKE: I didn't -- I found it. 
14 I didn't feel it. I don't remember it. 
15 ATTORNEY GENERAL BLUMENTHAL: 
16 Okay. 
17 MS. BAISLEY: I can't recall 
18 getting bit by a tick. I did not have the red -- 
19 the red bull's eye rash. I had hives instead. I 
20 had all the other classic signs, however, of Lyme 
21 Disease, the memory loss, the confusion, the 

50 
1 positive MRI. And I did see the inequities between 
2 the laboratory analysis. Blood drawn is -- and even 
3 the simple chemistries, by the way, which when I 
4 examined the laboratory reports of my own blood 
5 work, I saw the inequities between one lab and 
6 another. Even the ranges of the simple chemistries. 
7 Let's not even bother to talk about Lyme Disease. 
8 Let's talk about simple chemistries. It really 
9 depends on the lab that you go to. 
10 So that's very -- it's very 
11 important to note that when you're trying to look at 
12 a patient, diagnose a patient for something as 
13 serious as this, you have little inequities and you 
14 have a negative patient. So there's a lot -- 
15 there's a whole slew of other signs and symptoms 
16 that must be taken into account, obviously, other 
17 than a test, a laboratory test. Certainly we want 
18 to say that our laboratory tests play a major role 
19 in surveillance of diseases and diagnosis for 
20 disease. However, in this -- this one's not an easy 
21 one, folks. You really need to look at absolutely 

6 I'd like to welcome those comments. Since we are on 
7 a schedule here, I apologize again that we can't 
8 take comments from the audience, so to speak. But I 
9 want to emphasize to you how important your 
10 experiences would be to us. If you could simply 
11 write them or convey them somehow to us? 
12 The last time we had one of these 
13 hearings, it really made an enormous difference. We 
14 passed legislation as a result. The last hearing 
15 that I conducted with the Department of Public 
16 Health, we succeeded in changing the law to extend 
17 the guarantees for insurance coverage for treatment 
18 of Lyme Disease. Not as far as we sought or would 
19 have liked, but at least we were able to improve 
20 insurance coverage as a result of some of the 
21 testimony that we took at the time. As a matter of 
51 
1 everything. 
2 ATTORNEY GENERAL BLUMENTHAL: I 
3 want to thank you all. 
4 And just to those who may have 
5 additional observations, if we have time at the end, 

52 
1 fact, Tom Ryan, Assistant Attorney General, who is 
2 here today, was present then, too. 
3 And I want to thank you for coming 
4 today, all of you, but particularly the five 
5 patients that we have before us today and the other 
6 five who will be testifying next because your being 
7 here really makes a very powerful statement and your 
8 experience is really tremendously important to us. 
9 So thank you for being here. 
10 Dr. Galvin, did you have any 
11 questions? 
12 COMMISSIONER GALVIN: Just one 
13 comment. Coming from primary care -- and this is 
14 simply a comment and it's not a reflection on 
15 anybody or what I think is the way things should be 
16 done. When you do primary care -- I was in 
17 Glastonbury. And there's a lot of people who have 
18 exposure to Lyme Disease. And I'm out a lot in the 
19 meadows. And I've picked Lyme ticks off myself. 
20 We see large numbers of people 
21 beginning about late March who come in with some 

53 
1 sort of an insect bite. And not many of -- not all 
2 of them have the tick. That makes it easier if the 
3 tick is embedded or they have the tick. Some of 
4 them simply have a circular rash and don't know 
5 where it -- don't quite know where it came from. 
6 Some of these are stinging insects. Some of them 
7 are spider bites. Some of them are Lyme tick bites. 
8 And some of them are other bites. 
9 And the dilemma that a clinician 
10 has is when someone shows up in your office with an 
11 insect bite and a circular rash, what do you do? Do 
12 you begin to treat? Do you wait for some serologic 
13 marker to improve? Or do you try to discern exactly 
14 from looking at the rash what bit this individual? 
15 As one of you folks brought up, 
16 most -- a lot of the bites are where people don't 
17 see them. They're behind the knees, the back part 
18 of the body, the back of the scalp. And so 
19 sometimes the tick gets on, feeds, drops off and 
20 just -- or gets pinched or poked off. And every one 
21 of these patients -- it's a dilemma for people that 

54 
1 do primary care about do you give them three weeks 
2 of antibiotic treatments, particularly with 
3 Doxycycline, which is a sun sensitizer, during the 
4 summer? Do you give them three weeks' worth of 
5 treatment and restrict their activities? Do you 
6 give them Penicillin? Or what do you do? 
7 So that's -- that's what it looks 
8 like when you look way at the end of the funnel 
9 where people come in de novo. And I don't have an 
10 answer for this. But it's a question that myself 
11 and my partners dealt with almost every summer day 
12 from March until November and sometimes during the 
13 winter. As I told you, the last guy I saw was in 
14 the end of November. 
15 ATTORNEY GENERAL BLUMENTHAL: 
16 Thank you. Thank you all. 
17 (APPLAUSE) 
18 ATTORNEY GENERAL BLUMENTHAL: I'd 
19 like to ask Elise Brady-Moe, Jennifer and Katherine 
20 Reid, Tammy Sczepanski and Christopher Montes to 
21 come forward please. 

55 
1 I'd like to say we've been joined by Representative 
2 Spallone, who is here with us, Jamie Spallone, who 
3 many of you may know. 
4 And why don't we begin with Elise 
5 Brady-Moe please? 
6 MS. ELISE BRADY-MOE: My name is 
7 Elise Brady-Moe. I have chronic Lyme Disease. 
8 Three years ago, I was misdiagnosed with rheumatoid 
9 arthritis by my primary care physician because I had 
10 migrating joint pain. I never saw the tick and I 
11 did not have a bull's eye rash. 
12 Luckily, as my own health 
13 advocate, I did more research and I obtained a 
14 second opinion. Two and a half years ago, I was 
15 given a clinical diagnosis of Lyme Disease from a 
16 doctor who understands tick-borne diseases and who 
17 uses a lab that is proficient in identifying the 
18 antibodies created by the Lyme bacteria. 
19 I was treated with seven months of 
20 oral antibiotics before I decided it was safe to try 
21 and conceive a second child. We had intentionally 

56 
1 postponed having a second child until we felt we had 
2 done our best to rid my body of this dangerous 
3 bacteria. 
4 I conceived our second child in 
5 March 2002 and entered the pregnancy feeling 
6 confident that we would have a healthy child. The 
7 15-week ultrasound showed a healthy baby with a 
8 strong heart and all its organs were functioning 
9 normally. At 16 weeks, the remaining test results 
10 were all wonderful. 
11 At 18 weeks, I sensed something 
12 was wrong. My instinct was correct. Our baby boy 
13 was dead. While waiting for surgery the next 
14 morning, I came out of shock and I began wondering 
15 about the Lyme Disease. I had read that Lyme 
16 Disease could cause miscarriage, but there was no 
17 evidence to prove it. 
18 I called my Lyme doctor and a lab 
19 skilled in detecting the bacteria so I could 
20 determine how to test the fetus and the placenta for 
21 the bacteria. I took the information to the 

57 
1 hospital. And just before the surgery, I insisted 
2 that the OB obtain enough tissue for a separate PCR 
3 test for the Lyme bacteria. If I had not requested 
4 a PCR test at a specific lab, I would not know today 
5 what took our baby's life. 
6 Two weeks later, my OB informed us 
7 that the baby boy was chromosomally normal and the 
8 local lab did not find any bacterial or viral 
9 infections that are tested for in a normal 
10 miscarriage. He had no explanation. Only three 
11 percent of miscarriages end at 18 weeks into a 
12 pregnancy. I needed an answer. 
13 I received that answer the next 
14 Monday when the OB called me to report that the 
15 fetus and the placenta were PCR-positive for the 
16 Lyme bacteria. He concluded that the Lyme bacterial 
17 infection had caused the fetal demise. He actually 
18 thanked me for requesting the PCR test. 
19 We grieved all over again. How 
20 had this small bacteria survived seven months of 
21 antibiotics and continued to destroy our lives? 

58 
1 When I purchased a garden stone in memory of our 
2 baby boy, I promised myself that I would do 
3 everything in my power to help others avoid this 
4 tragedy. I am here today as part of that promise. 
5 The story continues. After the 
6 18-week miscarriage, I began another regimen of 
7 antibiotics. I was on three different oral 
8 antibiotics for six months before conceiving our 
9 third child. I stayed on Sephtin during the 
10 pregnancy to protect the fetus. But, unfortunately, 
11 it did not survive past nine weeks due to 
12 chromosomal problems. 
13 I requested a PCR test before the 
14 D&C. And the results were devastating. Again the 
15 placental tissue was PCR-positive for Lyme bacteria. 
16 What next? I did not want this disease to win. So 
17 I began a four-month regimen of IV antibiotics. 
18 After the IV was pulled out, I continued with oral 
19 antibiotics. And, luckily, I conceived a fourth 
20 time in November of 2003. The bad news is I have 
21 another miscarriage this month, unfortunately from 

59 
1 another chromosomal problem. The good news is the 
2 PCR test was negative. 
3 This does not mean I am rid of 
4 this bacteria. But it is a sign there is hope. 
5 Today I stand before you and I hope that there will 
6 be funding for more research into the testing and 
7 treatment of tick-borne diseases. I hope that your 
8 wife, your daughter or your sister do not have to 
9 deal with what we have dealt with during the past 
10 three years. I hope that you will help the future 
11 generations. It is time to help, not just hope. 
12 Thank you very much for your 
13 willingness to listen and your time today. 
14 (APPLAUSE) 
15 ATTORNEY GENERAL BLUMENTHAL: 
16 Thank you. 
17 Jennifer and Katherine Reid 
18 please. 
19 MS. JENNIFER REID: Thank you. My 
20 name is Jennifer Reid. In our house, Lyme Disease 
21 has infected four of five members, my three teenaged 

60 
1 daughters and me. No red circular rashes were ever 
2 present. No case was the same or easily detected. 
3 In each instance, the disease progressed to a high 
4 level of cognitive and neurological damage before a 
5 diagnosis was made. We have spent five years 
6 fighting not only the disease but also our insurance 
7 company. The strength of our family has been tested 
8 to its limits. 
9 Lyme Disease came into our lives 
10 when our eldest daughter, Shannon, left home for 
11 college. She had been on her own just a month when 
12 she began to experience the physical and cognitive 
13 changes that would make school work impossible. She 
14 was tired, foggy, had trouble memorizing and began 
15 suffering headaches. Trips to the infirmary brought 
16 no answers nor did the testing performed when she 
17 returned home for Christmas. Despite her summer job 
18 as a riding instructor, no mention was ever made of 
19 Lyme Disease. Her symptoms were simply dismissed as 
20 those of a college freshman having too good a time. 
21 In fact, we learned later she was 

61 
1 not having a good time. She was terrified. She 
2 describes that year now as watching herself slip 
3 away, becoming a completely different person whose 
4 thoughts and actions she hardly recognized. Our 
5 hard-working, happy daughter was sleeping through 
6 class, suffering from dyslexia, had short-term 
7 memory problems and was feeling angry, frightened 
8 and depressed. 
9 During that year, I, too, did not 
10 feel right. I just wasn't myself. I grew 
11 increasingly fatigued, foggy, impatient and 
12 disoriented. Joints began hurting until I could no 
13 longer move my neck. I felt as though my body had 
14 short-circuited. By day's end, I could barely make 
15 dinner, often too tired to even change clothes 
16 before crawling into bed. 
17 Trips to the doctor brought little 
18 relief, simply the diagnoses of early menopause and 
19 early arthritis, neither of which runs in my family 
20 and no tests were run to confirm either condition. 
21 I was given muscle relaxers for my neck and told to 

62 
1 accept the fact that we're all getting older. I was 
2 45. 
3 Lyme Disease was not considered 
4 for either of us until Shannon returned home from 
5 college and simply couldn't get out of bed. A full 
6 battery of blood tests finally included Lyme and it 
7 was positive. Shannon was put on one month of 
8 Doxycycline and a month of Sephtin. 
9 When I woke a few mornings later 
10 than Shannon's diagnosis and felt my body frozen 
11 stiff, I realized I, too, might have Lyme Disease 
12 and requested testing. Once again the results were 
13 positive. I received four weeks of Doxycycline. 
14 At the end of Shannon's course of 
15 antibiotics, both our primary doctor and a 
16 specialist confirmed that she should now stop taking 
17 antibiotics and see a psychiatrist. A second 
18 opinion -- I'm sorry. And at the end of my four 
19 weeks of oral antibiotics, I was told I had received 
20 all the antibiotics necessary. If I wanted 
21 additional treatment, I should go find a Lyme 

63 
1 doctor. Unbelievably, they could not provide a 
2 referral. 
3 On the advice of a neighbor whose 
4 five family members were all suffering from Lyme, I 
5 took Shannon to see Dr. Jones, a Lyme pediatrician, 
6 and he treated her for two years. Gradually, she 
7 regained her memory, energy and personality and has 
8 now been symptom-free for another two years. She 
9 has suffered no ill effects from her antibiotic 
10 care, only relief from the horror of this disease. 
11 She is one of the fortunate ones completing college 
12 and now on to graduate school. 
13 The search for my own cure was 
14 more daunting because I attempted to stay within the 
15 list of doctors my health care plan allowed. Months 
16 went by before I was able to restart treatment and 
17 even then it was minimal. Although I was so 
18 disoriented I could not drive myself to 
19 appointments, sat crying uncontrollably in the 
20 waiting room and was still plagued by fatigue, no 
21 mention was ever made of neurological testing or IV 

64 
1 antibiotics. There seemed to be no urgency in 
2 dealing with my condition. 
3 When I was told once more to relax 
4 and accept that I was getting older, I chose to 
5 change course and find a Lyme doctor. I was very 
6 relieved to be finally under the care of Dr. Steven 
7 Phillips and Dr. Amiram Katz and have my disease 
8 taken seriously. 
9 When my middle daughter, Katie, 
10 who is with me here today, awoke in August 2002 with 
11 a high fever, stiff neck and facial numbness, we 
12 couldn't believe we might be facing another battle 
13 with Lyme. Despite our recent history, doctors 
14 assured us, based on a negative Lyme test and 
15 negative spinal fluid, that this was a virus. 
16 Through September, as Katie began 
17 her senior year of high school, she developed severe 
18 gastrointestinal and menstrual problems and, for the 
19 first time ever, school work became a struggle. 
20 Fatigue set in with a fogginess she could not shake. 
21 We found ourselves caught up in addressing 

65 
1 individual symptoms, a time-consuming and exhausting 
2 process, that failed to address the cause of these 
3 maladies. 
4 By November, she was close to 
5 failing her classes. We returned to doctor, 
6 convinced it was Lyme, and requested both an ELISA 
7 and a Western Blot. And the results were positive. 
8 The doctor felt it was a false positive, but was 
9 willing to treat her because we felt so strongly 
10 about it. 
11 We sought neurological testing to 
12 help determine the extent of Katie's impairment. 
13 But, by the time our insurer approved, Katie was 
14 hospitalized with depression. In order to complete 
15 her senior year, Katie moved to Ridgefield's 
16 Alternative High School where we once again -- and 
17 we once again turned to Dr. Jones for help. 
18 Katie began a course of IV 
19 Claforan in April 2003. We began to see progress 
20 and felt our daughter was returning to us. Four 
21 weeks later, despite the recommendations of Dr. 

66 
1 Jones, neurologist, Dr. Amiram Katz and 
2 neuropsychologist, Miriam Rizzenburg, who had all 
3 evaluated Katie, United Health Care denied coverage 
4 for continued IV, stating that it is an unproven 
5 treatment. As our health care plan is purchased in 
6 New York from a self-insured company, we 
7 unfortunately had no recourse. And the 
8 responsibility has fallen on us to provide 
9 peer-reviewed medical literature demonstrating the 
10 benefits of long-term antibiotic care which we had 
11 not been able to do. 
12 The insurance company told me that 
13 they are not telling us what course of treatment is 
14 best but simply that they're not going to pay for 
15 it. Based on our doctors' recommendations, we 
16 continued Katie on IV antibiotics, paying ourselves, 
17 until she left for UConn in August 2003. 
18 A tearful phone call home four 
19 weeks later brought the news that we had dreaded. 
20 Her symptoms had returned. And if time permits, 
21 Katie will tell you what it is like to be a college 

67 
1 student trying to do an IV in your dorm room. 
2 A switch to -- 
3 MR. RYAN: Time. 
4 MS. JENNIFER REID: -- 
5 (indiscernible) improved cognitive functions but 
6 gall bladder problems that required surgery. Katie 
7 has since withdrawn from college in the best 
8 interest of her health. We have lost our tuition 
9 and our board monies, as well as now spent 
10 $10,000.00 on IV treatment in 2003. 
11 Gratefully, my husband has 
12 remained healthy, allowing us to pay for the 
13 specialists and medications that best fight this 
14 terrifying disease. We have seen over 20 doctors in 
15 this five-year battle. 
16 I am here today asking that 
17 Connecticut take the lead for this disease is 
18 discovered and lead our nation in eradicating this 
19 nightmare from our lives. 
20 ATTORNEY GENERAL BLUMENTHAL: 
21 Thank you. 

68 
1 (APPLAUSE) 
2 ATTORNEY GENERAL BLUMENTHAL: 
3 Katie, we'd certainly like to hear from you. 
4 MS. JENNIFER REID: Sure. 
5 MS. KATHERINE REID: I don't 
6 really want to be here today. I want to be in 
7 college. I want to be attending lectures, going to 
8 libraries and even eating that notorious dining hall 
9 food. But for the past three years, nothing in my 
10 life has gone how I've planned it, especially when 
11 you think about everything I've had to compromise 
12 for this illness, but even more frustrating to think 
13 that maybe it's not over. 
14 All I want is to wake up one day 
15 feeling like I used to. But it's hard to have hope 
16 as the months go on that that will ever happen. I 
17 don't have the time or energy to go through every 
18 symptom, doctor, medicine and experience that I've 
19 had. But I'd like to point out a few key ones that 
20 show just how devastating this illness can be on a 
21 young person's life. 

69 
1 As my struggle with the illness 
2 really climaxed my senior year, I went from being an 
3 athlete who easily ran six miles at a time to a 
4 person who not only didn't have the energy to 
5 participate in any sports or clubs but who could 
6 barely make it in to school before lunch. But that 
7 only meant physically making it in to the building. 
8 I couldn't handle the work any more. 
9 I couldn't memorize, I had no 
10 concentration and felt so foggy that I often 
11 described it as living in a cloud. I went from 
12 having a 4.0 GPA to barely passing any of my 
13 classes, even the electives. 
14 Feelings of depression mounted as 
15 the months went by. I honestly thought I was going 
16 crazy. I didn't want to be near anyone, my family, 
17 my close friends. I wanted to be alone all the 
18 time. I was paranoid, hostile and making rash, 
19 irresponsible decisions almost every day. 
20 I never did take my mid-terms. A 
21 good thing, because I didn't remember any of the 

70 
1 information. But a bad thing, because I spent that 
2 week in the hospital, the results of a rash decision 
3 I've regretted ever since but honestly thought at 
4 the time was a good solution to my emotional and 
5 physical pain. 
6 When I went back to school, we sat 
7 down with some administrators to discuss my new 
8 educational needs. This was the first time in my 13 
9 years of being in that school system that I ever 
10 needed any assistance. The accommodations they made 
11 were to send me to the Alternative High School. I 
12 didn't get to finish my senior year or participate 
13 in any of the senior activities with my friends. 
14 Instead, I was put into a building, although filled 
15 with kind people, where I was asked to deal with 
16 situations and personalities that I had never been 
17 exposed to before. 
18 When I spoke at that graduation, I 
19 honestly thought I was over the hardest part of my 
20 battle with Lyme Disease. I had only the most minor 
21 setbacks over the summer and began college at UConn 

71 
1 very excited. My IV had just been removed because of 
2 an infection. But, regardless, I was actually 
3 feeling good. 
4 That elation only lasted a few 
5 weeks before I found all of my old symptoms had 
6 returned despite taking my oral antibiotics 
7 religiously. I had a mid-line put in, then a pick 
8 line. I had my semester interrupted as I had to go 
9 home every weekend for various doctor appointments. 
10 Still, I worked so hard in my classes because I 
11 wanted to be there so badly. I studied all the time 
12 and was able to keep myself in the top five percent 
13 of my classes, even in the Honors Program. 
14 The week prior to finals, terrible 
15 chest pains landed me in the hospital where I was 
16 treated with Morphine and dismissed as suffering 
17 from anxiety. It was actually my gall bladder 
18 filled with stones. I didn't get to take those 
19 finals and consequently lost all of my credits from 
20 the semester. I remember thinking to myself that it 
21 just wasn't fair. My school work had been the only 

72 
1 thing that was important to me there. I didn't 
2 party. I didn't drink. I didn't do drugs. I 
3 barely had time to socialize at all. I deserved 
4 those credits. 
5 I also felt terrible that the 
6 money paid for that semester was lost. My parents 
7 have never been anything but supportive of my 
8 treatment. But I have been carrying around my own 
9 burden about the financial stress my being sick has 
10 caused my family. 
11 I could go on forever telling you 
12 about my experience. Sometimes it overloads my own 
13 mind to look back at every area of life this illness 
14 has had an impact on. I mean not one week has gone 
15 by where I haven't been to at least two or three 
16 doctors, had some sort of procedure completed, taken 
17 three medications and been inhibited from physical 
18 and cognitive activities. 
19 And I am only one case. There are 
20 three others in my family, ten in a group Dr. Katz 
21 has organized for teens struggling with this and 

73 
1 thousands more in the state. I know there are so 
2 many people who have it worse than I do. And that 
3 frightens me so much. I'm scared now dealing with 
4 this and scared about being here in the future after 
5 I've recovered. I want to move to somewhere far 
6 away from here where I can get better and never get 
7 this again. I want to move to a place where I can 
8 pet animals, go for a hike, go camping, lay down on 
9 fresh grass and not get sick from it. I want to 
10 swim without a rubber arm for my IV, read books and 
11 remember how the sentences ended and began, take 
12 walks without being instantly winded. I want my 
13 life back. 
14 ATTORNEY GENERAL BLUMENTHAL: 
15 Thank you. 
16 (APPLAUSE) 
17 ATTORNEY GENERAL BLUMENTHAL: 
18 Tammy Szcepanski? 
19 MS. TAMMY SZCEPANSKI: It pains me 
20 today when I think of how I used to be and I think 
21 of how many others really have Lyme Disease but are 

74 
1 being treated for Multiple Sclerosis. Think about 
2 it. No one what MS is caused from. So why treat 
3 with steroids in case it is Lyme? 
4 In 1987, when I was pregnant with 
5 my daughter, I had a rash on my stomach. The doctor 
6 said it looked like some form of shingles. But it 
7 didn't hurt. Jacqueline was born a beautiful, 
8 healthy girl. During the next two and a half 
9 months, we noticed her eyes did not seem to focus. 
10 Her legs would turn purplish in color and one time 
11 her leg swelled three times its normal size. On June 
12 6, 1988, she passed away from Sudden Infant Death 
13 Syndrome. 
14 When I was pregnant with my son, I 
15 started having debilitating fatigue. But I was told 
16 this was because I was pregnant. After he was born, 
17 the fatigue was still there. But now this was due 
18 to depression because of the loss of my daughter. 
19 In 1990, I went to the emergency 
20 room because I was vomiting, lightheaded and had 
21 pains in my stomach. I was told I had a viral 

75 
1 infection. I started having nausea, pain in my left 
2 ear and the fatigue was still present. 
3 On October 31, 1992, I had to 
4 leave work because I was vomiting, had 
5 lightheadedness and I was off-balance with my 
6 walking. My mother brought me to the emergency 
7 room. When we got there, the nurse replied, "She 
8 looks like she's having a stroke." The physicians 
9 did blood work and checked me out. I was lying on a 
10 stretcher when they told me I could go home and 
11 sleep. I had my eyes closed because the light hurt 
12 my eyes. My friend had to help me get dressed 
13 because I was so sick I couldn't do it myself. My 
14 mother replied, "You're still so sick. What did 
15 they say is wrong with you?" An ear infection. I'd 
16 be better in a couple of days. 
17 Over the next few days, my 
18 symptoms would get worse. The room felt like it was 
19 spinning and I was vomiting profusely and half my 
20 face went numb and I could barely walk. I had a CAT 
21 scan and MRI and would see a neurologist. I was 

76 
1 admitted to the hospital on November 4 and had blood 
2 work drawn and was started on steroids. My PCP would 
3 come in and tell me he had bad news for me. He said, 
4 "You had Lyme Disease at one time and that you do 
5 not have it any more." He proceeded to tell me that 
6 I had Multiple Sclerosis and life as I knew it 
7 before would no longer be like that. 
8 One has to remember, I was never 
9 treated for Lyme Disease. So how did it go away? 
10 During my stay in the hospital, I 
11 went down in the wheelchair and my neurologist said, 
12 "This girl has MS" and showed them my MRI so the 
13 class could see what a brain looks like that has MS. 
14 When I got out of the hospital, I 
15 asked my PCP if I could have Lyme and he said no. 
16 Over the next month, I would have profuse vomiting 
17 again. Diarrhea and debilitating fatigue was still 
18 present. I would see my PCP. But I was told I had 
19 the flu now because of my weak immune system from 
20 the MS. 
21 I saw my neurologist and asked 

77 
1 about Lyme and was told that Lyme does not cause 
2 lesions in your brain. It stayed as MS when we did 
3 not know what else it can be. So I believed him. 
4 Over the years, I would question 
5 if Lyme Disease was a possibility because I was 
6 always so sick. In 1998, I started taking the ABC 
7 drugs because I was so bad. I walked like I was 
8 drunk all the time, had muscle spasms, nausea, pain 
9 that would come and go, memory problems, 
10 debilitating fatigue where getting dressed would 
11 take all my energy for the whole day. There were so 
12 many symptoms I had. I was so debilitated that I 
13 could not function. My life was an existence. 
14 Over the years, I have had 
15 steroids intravenously eight times, been on over 50 
16 different medications for my so many different 
17 ailments, took a shot for my secondary progressive 
18 MS, which eventually would turn into primary 
19 progressive MS, and even had Novantrone, which is a 
20 form of chemo, for my MS, just hoping it would help 
21 my symptoms get better. 

78 
1 Once I had the chemo, I started 
2 experiencing pain all my body. My nausea was 24/7. 
3 The light hurt my eyes. If someone hugged me, my 
4 whole body would hurt. Clothes bothered my skin. 
5 My skin felt like I had bugs crawling in it. And I 
6 had to use the walls or someone to hold onto to 
7 walk. I really believed I was dying. 
8 There was no quality to my life at 
9 all. The fatigue was never relieved. My husband 
10 and I went through my medical records from the 
11 hospital I received care at. We found a positive 
12 test for Lyme Disease. I brought it to my PCP. He 
13 said, "Yes. The blood test was positive. And 
14 that's why we did the spinal tap." All those years 
15 I was told nothing showed for Lyme and now he tells 
16 me that something did. 
17 My doctor thought that maybe I 
18 could have fibromyalgia now on top of my primary 
19 progressive MS. I wanted to see an infectious 
20 disease doctor in Bristol, but he said, "No, because 
21 he will say you have Lyme Disease and put you on 

79 
1 medication you do not need." He told me I could see 
2 a good friend of his who was an infectious disease 
3 doctor. 
4 When we were waiting in the room, 
5 he came in and he said that he had just gotten off 
6 the phone with my doctor. I showed him my symptom 
7 list and he said, "That doesn't mean anything." I 
8 told him about all my pain and the rash when I was 
9 pregnant, that I went camping and showed him the 
10 test I found and asked if I could have Lyme Disease. 
11 He said no, that "You might have fibromyalgia on 
12 top of your Multiple Sclerosis." 
13 I was so sick I truly believed I 
14 was dying a slow and painful death. And I was just 
15 getting worse and worse. I looked to a higher power 
16 because I believed no human could help me. Over the 
17 years, I had seen five neurologists and two 
18 infectious disease doctors and they all said it was 
19 MS. 
20 Finally, out of desperation, I 
21 would bring my records to a doctor in New Jersey. I 

80 
1 wanted the pain to go away and someone to just help 
2 me. He looked at my records, did blood work and he 
3 was the first doctor to say, "You have chronic Lyme 
4 Disease". And I was started on antibiotics. "And I 
5 believe you have had it for several years." 
6 My test came back positive by the 
7 CDC criteria. Over the next couple of months, my 
8 family and I would notice improvement. I got a 
9 lawyer and he would subpoena my records from all the 
10 doctors and hospitals I saw over the years. I found 
11 out last year from these records that my lawyer 
12 subpoenaed that my ELISA was weakly positive, 
13 Western Blot was equivocal and I found a Lyme 
14 Disease discharge paper, a paper that says CSF 
15 positive and a paper the nurse wrote indicating that 
16 I had presented with symptoms of Lyme Disease way 
17 back in '92. I never saw any of these papers until 
18 I had a lawyer. 
19 I have improved tremendously from 
20 where I was two years ago. I have been off all my 
21 MS medications for over two years now. My new 

81 
1 doctor in Boston was the first doctor to ever order 
2 a brain spec scan which shows prior focal 
3 encephalitis and lack of profusion -- 
4 MR. RYAN: Time. 
5 MS. SZCEPANSKI: -- in certain 
6 areas of my brain. I just had another brain spec 
7 scan done which shows improvement. 
8 I have started school part-time to 
9 try to find myself. I am angry when I think of what 
10 I have lived through and do not understand why most 
11 doctors in the state do not realize the reality of 
12 Lyme Disease. Lyme Disease can mimic MS and can be 
13 treated more effectively than MS. This is not being 
14 taught in our medical schools. I do not understand 
15 why doctors do not realize that Lyme is a real and 
16 complex disease that can mimic many disorders. 
17 We really have no conception as to 
18 the true magnitude of the Lyme Disease epidemic. 
19 Untold numbers of Lyme patients are being labeled 
20 with other diseases. Why are so many people being 
21 diagnosed with Multiple Sclerosis? My story is not 

82 
1 unique. This is happening everywhere. 
2 So far I've helped several others 
3 who were treated for MS only to find out that they 
4 have had Lyme all along. It appears that our state 
5 is becoming progressively disabled. This puts an 
6 enormous drain on the economy. It would seem that 
7 investigation into an accurate diagnosis and 
8 treatment of Lyme Disease should be one of 
9 Connecticut's top priorities. 
10 (APPLAUSE) 
11 ATTORNEY GENERAL BLUMENTHAL: 
12 Christopher Montes. 
13 MR. CHRISTOPHER MONTES: Attorney 
14 General Blumenthal, Commissioner Galvin and esteemed 
15 elected officials, thank you for the opportunity to 
16 speak at today's hearing. Five years ago, I stood 
17 in this building with an IV shunt in my arm. And 
18 it's my fifth year of treatment for Lyme Disease. 
19 Five years ago, I was still suffering with symptoms 
20 that inundated every day of my life, making even the 
21 simplest of tasks seem insurmountable. 

83 
1 Five years ago, it was uncertain 
2 as to what the prognosis of my illness would be. I 
3 felt I had a death sentence. All I could do was to 
4 continue to hope and pray that one day I would be 
5 well enough to care for my wife and two children. 
6 And, in part as a result of the hearing on Lyme 
7 Disease in 1999, with your help, Mr. Attorney 
8 General, and by the grace of God, I was able to 
9 continue my antibiotic regimen without fear of my 
10 insurance company once again denying payment for 
11 treatment. 
12 Now, two and a half years after my 
13 last antibiotic infusion, I believe I have finally 
14 beaten this disease. I must, therefore, thank my 
15 doctors not only for their willingness to treat me 
16 but for their courage to stand up for what is right 
17 in the face of controversy. 
18 You've heard some very compelling 
19 testimonies and, no doubt, are wondering how our 
20 medical community, touted as the best in the world, 
21 could allow what has happened to occur. Indeed, the 

84 
1 question must be asked, "How is it that patients 
2 could become so ill and be misdiagnosed for so long? 
3 How is it that even after adequate antibiotic 
4 treatment these people can still be infected to the 
5 point that active spirochetes are found in their 
6 bodies?" 
7 "Why are there so few physicians 
8 who know how to properly diagnose this disease? Why 
9 haven't our medical schools taught students that 
10 Lyme Disease can quite often be recalcitrant, 
11 difficult?" 
12 The science is there, as I believe 
13 you will see later on today during the physicians 
14 panel. However, we must depolarize the medical 
15 community regarding Lyme Disease and accept the 
16 truth of the matter. 
17 My hope is that the State of 
18 Connecticut will make Lyme Disease a true priority. 
19 It is, without doubt, a major health threat that has 
20 robbed thousands of individuals of their inherent 
21 right to live a normal life. I believe the time has 

85 
1 come for our State leaders to make serious 
2 commitments to appropriate surveillance, including 
3 laboratory reporting, prevention, teaching its 
4 physicians about diagnosis and treatment and even 
5 additional promising modes of disease intervention. 
6 Last year, in Connecticut alone, 
7 Lyme Disease dwarfed West Nile Virus in terms of 
8 cases by a ratio of 40,000 to 12. Yet, where were 
9 our prevention efforts focused? Of those 40,000 
10 cases, it is estimated that at least ten percent 
11 remain chronic, requiring ongoing or multiple 
12 regiments of antibiotic treatment. 
13 Does it not make sense simply from 
14 an epidemiological viewpoint to focus on preventing 
15 these infections based on the rate of incidence? 
16 True, it may be said that the State of Connecticut 
17 has prevented the spread of West Nile Virus. And 
18 that is admirable. However, we know for certain 
19 that Lyme Disease and other tick-borne illnesses are 
20 pandemic throughout our state. Yet, little has been 
21 done to stem the tide of infection. 

86 
1 Moreover, from an academic 
2 standpoint, the University of Connecticut School of 
3 Medicine has a unique opportunity concerning 
4 diagnosis and treatment of Lyme Disease. Indeed, it 
5 is also -- it also has a responsibility to impart 
6 accurate information to students seeking a degree in 
7 medicine. 
8 The proof of persistent infection 
9 has reached the tipping point in the medical 
10 community. And our state's medical teaching 
11 institution now has a choice before it. The first 
12 choice is to continue with its current methodology 
13 of teaching the diagnosis and treatment of Lyme 
14 Disease. That is using textbooks and other teaching 
15 instruments that still, for example, indicate that 
16 "The disease is, more often than not, present with a 
17 bull's eye rash." It doesn't. "It will usually be 
18 picked up through serologic testing." It isn't. 
19 "It should be diagnosed using the CDC's reporting 
20 criteria." It shouldn't. "It's mainly 
21 rheumatological." It isn't. "And requires, at most, 

87 
1 a three-week course of antibiotics as the cure." It 
2 doesn't, especially when the patient has been 
3 infected long-term. 
4 Conversely, the medical school can 
5 now turn from its now-outdated stance, paying 
6 particular attention to the science of persistence, 
7 co-infections and the required treatment thereof. 
8 We have reached a place where the light has shown on 
9 Lyme Disease and revealed an insidious illness no 
10 longer to be associated with a summer flu-like 
11 benignity but, rather, much more. It is time for the 
12 UConn Medical School to embrace and teach this 
13 reality. 
14 As a municipality official 
15 overseeing a department that provides mental health 
16 services for children and families, as well as case 
17 management and advocacy for persons with 
18 disabilities, I've witnessed patients with Lyme 
19 Disease not being able to access medical treatment. 
20 Many of these individuals often lose their jobs as a 
21 result of their result and must take State 

88 
1 Assistance or Medicare just to survive. 
2 The only problem is there are no 
3 physicians I am aware of who are knowledgeable in 
4 Lyme Disease that take Title XIX or Medicare 
5 assignment. The same can also be said for our 
6 state's children on the HUSKY Program. 
7 Concomitantly, these patients have 
8 been turned away by the mainstream physicians 
9 because Lyme Disease is, quote, too controversial. 
10 This has even happened when patients were referred 
11 to the local hospital's infectious disease 
12 specialists. This is an outrage. 
13 MR. RYAN: Time. 
14 MR. MONTES: Additionally, even 
15 some once-active Lyme-knowledgeable physicians have 
16 now refrained from taking new Lyme Disease patients 
17 for fear of being turned in to the Department of 
18 Public Health for over-diagnosing and over-treating 
19 the disease. However, to date, I am aware of no 
20 medical misdeeds of any physicians treating Lyme 
21 Disease. And those who have been reported as such 

89 
1 have been exonerated by the Department. 
2 Still, patients have very few 
3 choices for diagnosis and treatment of the disease. 
4 All this in the country's most endemic state. There 
5 is certainly something wrong that needs to be 
6 righted. 
7 I am, therefore, asking that a 
8 joint effort between the Office of the Attorney 
9 General and the Department of Public Health, an 
10 officially appointed committee of Lyme-knowledgeable 
11 physicians, State Agricultural Testing Station 
12 representatives, patients, lawmakers and members of 
13 advocacy groups convene to provide recommendations 
14 to the State of Connecticut regarding the status of 
15 Lyme Disease and other tick-borne infections. 
16 Furthermore, I request that these 
17 recommendations be formalized by report and 
18 considered for action by the State of Connecticut. 
19 Moreover, this committee would be 
20 ongoing and, thus, respondent to the changes that 
21 occur in the spread of the disease, its prevention, 

90 
1 diagnosis and treatment. Thereby, true progress can 
2 be made concerning this issue and, as such, 
3 ultimately benefit the citizens of Connecticut. 
4 Thank you again for this 
5 opportunity. 
6 (APPLAUSE) 
7 ATTORNEY GENERAL BLUMENTHAL: 
8 Again, I gather that none of you recalls actually 
9 being bitten by a tick. And you, Ms. Szcepanski, 
10 recall a rash? 
11 MS. SZCEPANSKI: I had a rash. 
12 They said it looked like some form of shingles. But 
13 it didn't hurt. I found out shingles hurts. I 
14 didn't know that. 
15 ATTORNEY GENERAL BLUMENTHAL: So 
16 it was -- was it or was it not a bull's eye -- 
17 MS. SZCEPANSKI: No, it was not a 
18 bull's eye. No. 
19 ATTORNEY GENERAL BLUMENTHAL: 
20 Okay. So none of you had that rash that was 
21 ordinarily -- that is ordinarily associated with 

91 
1 diagnosing the disease. 
2 MS. SZCEPANSKI: No. 
3 ATTORNEY GENERAL BLUMENTHAL: And 
4 as I think was demonstrated pretty dramatically 
5 during what each of you said, you all encountered 
6 misdiagnoses in the course of your complaints and 
7 very radical delays in treatment as a result of that 
8 misdiagnosis. 
9 We're going to move now to the 
10 scientific part of today's program -- 
11 MS. SZCEPANSKI: Okay. 
12 ATTORNEY GENERAL BLUMENTHAL: -- 
13 for today's hearing. But let me just say -- 
14 MR. MONTES: Excuse me. 
15 ATTORNEY GENERAL BLUMENTHAL: Let 
16 me just say, first of all, before Dr. Galvin -- 
17 before you leave and before Dr. Galvin has something 
18 to say, that I again want to thank every one of the 
19 patients, every one of the citizens who are here 
20 today. Mr. Montes mentioned again the hearing that 
21 we had five years ago. Many of you have been 

92 
1 working on this problem for five years or longer, as 
2 I have been. And your perseverance, your thought, I 
3 would say, and your help to others has made an 
4 enormous difference. This fight is a scientific 
5 one, but it's also a human struggle. And so the 
6 work done by the Greater Hartford Lyme Disease 
7 Support and Action Group has been instrumental. And 
8 many of you on an individual basis have helped your 
9 fellow citizens, fellow patients, in ways that I'm 
10 sure are profoundly meaningful. So I want to thank 
11 you for that work as well. 
12 Dr. Galvin? 
13 COMMISSIONER GALVIN: Yeah. I 
14 wanted to ask Mr. Montes a couple of questions. And 
15 then I had a comment. 
16 If I understood your remarks 
17 correctly, you feel that there are a group of people 
18 with Lyme-related diseases who are unable to access 
19 physicians because of payment issues? 
20 MR. MONTES: Yes, sir. 
21 COMMISSIONER GALVIN: Okay. I 

93 
1 would like to more about that. And I would like to 
2 know about that as, specifically in a state of this 
3 affluence, no one should be denied access to medical 
4 care. 
5 I think if I heard you correctly, 
6 you had the opinion that most of the current tests 
7 are not acceptable for diagnosing Lyme and we need 
8 new testing? Is that what you're saying? 
9 MR. MONTES: I don't believe I 
10 said that, sir. 
11 COMMISSIONER GALVIN: Well, I 
12 thought you made remarks that the -- that some of 
13 the blood tests weren't any good and -- I'm not sure 
14 what you meant. So I probably didn't understand 
15 your remarks. And perhaps you can say them again. 
16 MR. MONTES: I think I said that 
17 "It will usually be picked up through serologic 
18 testing." And then said it isn't. Meaning that 
19 more often than not, patients who are -- who do 
20 have, indeed, Lyme Disease upon first being tested 
21 do not test positive. 

94 
1 COMMISSIONER GALVIN: So are you 
2 saying that when they're first tested, the test is 
3 not positive because it isn't for several days or 
4 are you saying that the test is incorrect more often 
5 than not? 
6 MR. MONTES: I can't be sure of 
7 that. But I can tell you from personal experience 
8 that I never tested positive until after I was off 
9 of antibiotics. Now I do show having an old 
10 infection. I never had an active infection show. 
11 COMMISSIONER GALVIN: I understand 
12 that. I believe that you understand that the chap 
13 who came in my office on the 26th of November would 
14 not be -- in all likelihood, not be positive at that 
15 time because the tick hadn't been attached to him 
16 that long. 
17 MR. MONTES: Yes. 
18 COMMISSIONER GALVIN: And so if we 
19 take everybody who comes in with tick attached and 
20 test them at that time, most of them will be 
21 negative because the tick -- they haven't had time 

95 
1 enough to develop lab tests. So I think we need to 
2 be clear about whether we're -- when we say some of 
3 the -- a majority of the tests are negative, are we 
4 talking about first run right after the bite or are 
5 we talking about a long-term thing? 
6 One of my regulators is here, 
7 Wendy Furness, who runs the part of our Department 
8 that investigates complaints. And I want the 
9 audience to know that we are required to investigate 
10 all complaints. Some of the complaints we get are 
11 from the general public and some of them are from 
12 other physicians who object to different types of 
13 treatment. 
14 We have no rule about what 
15 treatment is correct or best in terms of the 
16 complaints we get. I realize that there are a 
17 variety of ways that physicians can look at cases. 
18 So Ms. Furness I think will support me when I say 
19 that we have no rules about how long you can treat 
20 Lyme Disease, which antibiotics, which route or the 
21 like. We -- 

96 
1 But I want you to know, sir, that 
2 we are required, if somebody complains or a group of 
3 physicians complain about another physician, we have 
4 to open the complaint. We're required to do that. 
5 Thank you. 
6 (APPLAUSE) 
7 ATTORNEY GENERAL BLUMENTHAL: 
8 Again, I thank you for being here. 
9 I should mention, if I didn't at 
10 the outset, that we're making a transcript. There 
11 will be a record of this hearing. And it will be 
12 made available to anyone who wants it. 
13 In addition, we hope that perhaps 
14 we can consider the kind of suggestion you've made, 
15 Mr. Montes, about a task force or a committee that 
16 will make specific recommendations. But we'll 
17 certainly want to talk to you some more about that. 
18 MR. MONTES: Thank you. 
19 ATTORNEY GENERAL BLUMENTHAL: 
20 Thank you. 
21 Thank you very much. 

97 
1 I'm going to now ask the 
2 scientific panel to come forward. We're going to 
3 begin with Dr. Tilton, Dr. Kelley, Katherine Kelley, 
4 Richard Tilton. I understand Sam Donta is not here? 
5 He couldn't be here. Dr. Robert Levitz and Dr. 
6 Steven Phillips. 
7 (Off the record) 
8 ATTORNEY GENERAL BLUMENTHAL: If I 
9 could have your attention? If I could ask you to 
10 come to order please? Thank you. Thank you. We're 
11 going to proceed now with the scientific, the 
12 physician and laboratory panel, which consists of 
13 five -- which consists of ten individuals. We're 
14 going to divide them into groups of five. 
15 I want to announce first that we 
16 have been joined by Representative Claire Janowski 
17 of Vernon. She's here. If you could raise your 
18 hand? 
19 And, also, Senator McKinney of 
20 Fairfield. Where is John McKinney? 
21 And, of course, Dolly Powers is 

98 
1 still here. Anyone else from the legislature still 
2 here? Representative Powers. Anyone else? 
3 I also have been asked -- and, 
4 obviously, we have an overflow crowd. So this -- 
5 this question won't necessarily elicit an answer 
6 from everyone. But someone suggested -- I think 
7 it's a good idea -- if we could have a show of hands 
8 from everyone who has been diagnosed with Lyme 
9 Disease but did not have the bull's eye rash? If 
10 you could raise your hand? So I don't know whether 
11 we can get that on CTN or -- so we have it. Hold 
12 your hand up for just a moment. 
13 Maybe you could pan the audience, 
14 whoever is doing CTN. Thank you. 
15 Thank you very much. So that's a 
16 -- for the record, that is a very overwhelming show 
17 of hands, I would say. Probably about as accurate, 
18 more accurate than some of the polls we've been 
19 seeing from the primary states lately. So thank 
20 you. 
21 I would like to introduce the 

99 
1 first panel that is, I believe, seated before me. 
2 And then we're going to have a second panel. And 
3 the objective here as much as anything else is to 
4 have an exchange among the docs and the experts that 
5 we have here this morning. Somebody -- I was asked, 
6 "Are you presenting only one side of this issue?" 
7 And our goal is to present as many sides as possible 
8 and produce a hearing that is truly fair and 
9 balanced. And I want to thank again our expert 
10 panel for being here this morning. 
11 We're going to hear first from 
12 Drs. Zemel, Levitz, Phillips, Fallon and Tilton. 
13 And why don't we go in that order, if that's okay 
14 with all of you? 
15 DR. LAWRENCE ZEMEL: Attorney 
16 General Blumenthal, Dr. Galvin and members of the 
17 audience, I am a professor of pediatrics at the 
18 University of Connecticut School of Medicine and 
19 Chief of the Division of Pediatric Rheumatology at 
20 Connecticut Children's Medical Center. I've been 
21 practicing medicine in Connecticut for nearly 27 

100 
1 years and have had extensive experience in 
2 diagnosing and treating Lyme Disease in children. 
3 I have three points to make today 
4 at this public forum. Firstly, while I applaud 
5 efforts to engage the public in major public health 
6 issues, the medical and scientific aspects of this 
7 complex disorder are best left to those forums which 
8 traditionally discuss science, such as scientific 
9 meetings, collaborative research and peer-reviewed 
10 reputable journals. 
11 My second point addresses the 
12 diagnosis of Lyme Disease. The case definition of 
13 Lyme Disease has been established by the CDC and 
14 Association of State and Territorial Public Health 
15 Laboratory Directors and forms the framework for 
16 diagnosing Lyme Disease. 
17 While I do not always rigidly 
18 adhere to these criteria, I am concerned about gross 
19 deviations which contribute to the over-diagnosis of 
20 Lyme Disease. One of these misconceptions is the 
21 concept of sero-negative Lyme Disease. 

101 
1 Sero-negative Lyme where antibodies are not 
2 detectable may be seen in early Lyme Disease. But 
3 in those patients, clinical features such as the 
4 telltale rash often allow for the diagnosis. 
5 Rarely, patients with later Lyme 
6 Disease who earlier had developed erythema migrans 
7 may be sero-negative. 
8 There is a very slippery slope 
9 when people with non-specific complaints, such as 
10 fatigue and pain, who test negative for Lyme 
11 antibodies are nevertheless diagnosed with Lyme 
12 Disease by a small group of physicians. 
13 I've seen many children and 
14 adolescents who were mistakenly diagnosed as having 
15 Lyme Disease and appropriate therapies for their 
16 true underlying disorder were delayed. One such 
17 child was JD, a seven-year-old who enjoyed soccer 
18 and video games. He started to complain of back 
19 and hip pain. His mother went on one of the popular 
20 Lyme websites and found that these are common Lyme 
21 symptoms. 

6 than arthritis. I repeated the Lyme tests at 
7 mother's request. These again were negative. And 
8 found that he was anemic. I ordered a bone scan, 
9 but the family cancelled that study and sought an 
10 opinion from a physician in New Haven. 
11 He diagnosed sero-negative Lyme 
12 Disease and treated the child for the next three 
13 months with two different antibiotics. When JD 
14 deteriorated, with weight loss, pallor and 
15 increasing pain, he came back to see me. I made sure 
16 a bone scan was performed immediately. Multiple 
17 areas of bone lit up and a bone marrow aspiration 
18 confirmed the diagnosis of acute lymphocytic 
19 leukemia. Fortunately for JD, he is now doing well. 
20 This is but one dramatic example 
102 
1 He went to his pediatrician to be 
2 tested. And the pediatrician ran the standard ELISA 
3 and Western Blot line mass aids, which were 
4 negative, and then referred the child to me. My 
5 exam suggested that there was bone disease rather 

103 
1 Other examples have included rheumatoid arthritis, 
2 fibromyalgia, chronic fatigue syndrome and 
3 ankylosing spondylitis and others. 
4 Even some of the testimony heard 
5 today may be confusing. For example, Josh 
6 courageously described his own Lyme Disease but 
7 failed to mention that he tested positive for 
8 HLIB-27, a marker for reactive arthritis. This is a 
9 form of arthritis that spontaneously remits. 
10 Some of the more popular websites 
11 contribute to this misinformation by including a 
12 long list of symptoms which have nothing to do with 
13 Lyme Disease. For example, the Lyme primer on the 
14 website of the Lyme Disease Association includes 
15 constipation and weight gain as Lyme symptoms. 
16 Diagnosis may not only be missed 
17 clinically, but different lab techniques may 
18 contribute to the confusion. A case in point is a 
19 California lab, Igenex. A few Connecticut 
20 physicians prefer this lab over such referenced labs 
21 as Yale and UConn. Igenex's urine antigen assay has 

104 
1 confirmed the diagnosis of Lyme Disease in a number 
2 of their patients despite negative testing 
3 elsewhere. 
4 A 2001 report in the American 
5 Journal of Medicine concluded that this assay was 
6 useless since samples of urine submitted from 
7 healthy controls were just as likely to be abnormal 
8 as normal. In fact, samples from each control were 
9 split into five aliquots. And even these results 
10 varied. 
11 Another report claimed to culture 
12 Borrelia from patients with chronic Lyme Disease. 
13 These patients were mostly sero-negative or had only 
14 IGM antibodies, not a reliable marker for chronic 
15 Lyme Disease, and their diagnosis was made on 
16 clinical grounds. One of the study patients was a 
17 child who I diagnosed with classic systemic juvenile 
18 rheumatoid arthritis. Needless to say, this data 
19 has never been replicated. 
20 My last point is that as 
21 physicians we took an oath to do no harm. The New 

105 
1 York Times in an Editorial two years ago expressed 
2 concern about the overuse of antibiotics and the 
3 development of resistant organisms. Quote, "Drug 
4 resistance has soared because antibiotics are 
5 over-prescribed", end quote, claimed the Times. 
6 Additionally, antibiotic use has 
7 been associated with low white blood counts, 
8 catheter infections, gall bladder surgery, colitis 
9 and even death. 
10 There are guidelines for the 
11 duration of therapy for established Lyme Disease. 
12 And the same dangers exist for overextending this 
13 treatment. Although, I personally have had to use 
14 several courses of IV antibiotics in a few children 
15 with resistant neurologic disease. 
16 Some of the late symptoms 
17 attributed to Lyme Disease may have immunologic 
18 mechanisms, including resistant arthritis and some 
19 encephalopathic or brain symptoms, and may no longer 
20 require antibiotic therapy. 
21 A 2001 study in the New England 

106 
1 Journal of Medicine concluded that chronic Lyme 
2 symptoms were no more likely to respond to 90 days 
3 of antibiotics than placebo. For those advocating 
4 longer than standard therapy, we need more data. 
5 In response to Mr. Montes' 
6 articulate remarks earlier, there has never been a 
7 child on Title XIX or Medicaid who was denied care 
8 at Connecticut Children's Medical Center. 
9 I conclude with my second and 
10 third points. Let's not ignore the science. And 
11 let us do no harm. 
12 Thank you. 
13 ATTORNEY GENERAL BLUMENTHAL: 
14 Thank you. 
15 (APPLAUSE) 
16 ATTORNEY GENERAL BLUMENTHAL: Dr. 
17 Levitz? 
18 DR. ROBERT LEVITZ: Yes. Hi. I'm 
19 Assistant Director of Infectious Disease at Hartford 
20 Hospital. And I've been in the practice of 
21 infectious disease here in Connecticut for over 20 

107 
1 years. I've seen hundreds of patients with Lyme 
2 Disease. And I do general practice of infectious 
3 disease, which includes AIDS, hospital infections, 
4 surgical infections, et cetera. 
5 Actually, I think my secretary -- 
6 I don't know if we can strike words from the record 
7 after I say them. But I do take Medicaid and 
8 Medicare assignments again for patients with Lyme. 
9 But my secretary is going to kill me for mentioning 
10 that publicly, with all the phones lighting up. So 
11 there are physicians who indeed do see patients on 
12 just Medicaid or Medicare assignment. 
13 I would like to bring up that -- 
14 we only have ten minutes allotted. But, yes, I've 
15 seen a number of patients who have misdiagnosed 
16 Lyme, including with advanced neurologic disease. 
17 I've seen patient's who had Bell's Palsy that wasn't 
18 picked up and later had cardiac arrhythmias. We 
19 haven't heard a lot about the cardiac effects from 
20 Lyme Disease. 
21 But I'd like to talk in this 

108 
1 meeting when we talk about diagnosis and therapy and 
2 symptoms about one of the problems that I see in the 
3 community and the differentiating of the Lyme 
4 specialists, the infectious disease specialists and 
5 actually criticism for a lot of what we all do in 
6 our care. I also would like to bring up a few quick 
7 cases. 
8 TK is a 16-year-old who saw me 
9 almost exactly four years ago in my office. And the 
10 reason she saw me was that in 1998, she had had 
11 difficulty concentrating at school, very similar to 
12 some of the stories you heard, missing lots of time 
13 from school, also general aches and pains in her 
14 joints. 
15 This went on actually for several 
16 years. Finally, a Lyme serology was done which had 
17 a positive ELISA but negative Western Blot. She was 
18 begun on Amoxicillin by her physician, then 
19 Zithromax and then Sephtin, but no improvement in 
20 these symptoms. Still missing a lot of time from 
21 school. The main symptom being cognitive. 

109 
1 She was seen by a physician 
2 specializing in Lyme in Westchester and placed on IV 
3 Septra Zone, two grams a day. She was in her sixth 
4 week of continuing therapy with no improvement in 
5 her cognitive symptoms, still home from high school, 
6 when she was referred to see me because of a rash 
7 that developed on her body actually emanating from 
8 the IV site, most likely an allergic reaction to her 
9 Septra Zone. 
10 When I saw her and took a history, 
11 her mom said, "Actually, she had something similar 
12 to this, difficulties in school, when she was eight 
13 years old, when she was diagnosed with profound 
14 hypothyroidism. In fact, was on Thyroid to that 
15 day. We did a fairly complete work-up. One of the 
16 things it included was a B-12 level, which was low. 
17 In fact, her whole family -- it turned out her 
18 sister and her mom were B-12 deficient. She 
19 received no further antibiotics. She did receive 
20 B-12 supplementation. I spoke to her a week ago and 
21 she's an honor student at the University of 

110 
1 Connecticut, has had no further symptoms, required 
2 no other antibiotics. 
3 My partner, Dr. Brian Cooper, head 
4 of our department, had a patient sero-negative for 
5 Lyme but diffuse severe arthralgia and severe 
6 fatigue going on years, was seen by a physician for 
7 Lyme Disease and was given intramuscular shots of 
8 Penicillin on a weekly basis for treatment of 
9 perhaps sero-negative Lyme. This went on for 
10 several years before seeing my partner in 
11 consultation, who noted some elevation of liver 
12 function tests. 
13 Serologic testing for Hepatitis C 
14 was positive, another unfortunately common disease 
15 in this state. And the antibiotics were 
16 discontinued and treatment for Hepatitis C was 
17 begun, which was does present with fatigue. 
18 And I've had personally numerous 
19 patients who thought they might have Lyme come in 
20 with Hepatitis fatigue, with these joint pains from 
21 antigen antibody complexes. And they do respond 

111 
1 actually to the Interferon and Riboviron treatment. 
2 If this sounds like there are 
3 cases I'm saying that are overdiagnosed as well, I 
4 think there's a lot of fault with the infectious 
5 disease community as well rather than just say 
6 "Well, some people with Lyme Disease -- Lyme 
7 specialists are just treating everybody as Lyme no 
8 matter what they have." 
9 I saw a patient just a few months 
10 ago who was seen by a very prominent infectious 
11 disease physician in the Northeast here for a 
12 question of Lyme Disease, a very active, 66-year-old 
13 man who complained of cognitive deficits and joint 
14 pain, strange pains in his body, and was seen and 
15 evaluated and, as you've heard from the testimony 
16 this morning, told "You don't have anything. You 
17 don't have Lyme Disease. And basically, get out of 
18 my office." And I think this is a major problem 
19 with a lot of my colleagues, actually, in the 
20 community. 
21 He came to see me because he still 

112 
1 had all the symptoms he had when he went to the 
2 other infectious disease physician and was told he 
3 didn't have Lyme Disease, but nothing further was 
4 done. 
5 Again, this 66-year-old had a 
6 Vitamin B-12 level of 120, a normal hematocrit. We 
7 may hear more -- I hate even commenting on this with 
8 the neurologists here. But may talk about this more 
9 in the future. But it's actually underdiagnosed. 
10 It's not my field of specialty. But in my complete 
11 work-up, I look for other diagnoses and things to 
12 treat. 
13 I can't say that he is all better 
14 yet. We've just actually begun him on 
15 supplementation. But we are seeing a lot of people 
16 who I see all the time who come who are incompletely 
17 worked up, not responding to antibiotics and may 
18 have other diseases. 
19 Several other things is what do 
20 you do with these sero-negative patients who have 
21 the symptoms -- and we've heard a lot about Lyme. I 

113 
1 actually just printed out from a website -- chronic, 
2 frequent headaches, numbness and tingling, 
3 dizziness, ringing in the ears, tremors, hands and 
4 feet, lower pain threshold, irritability, 
5 nervousness, shyness, loss of memory, inability to 
6 concentrate, mental confusion, mood changes, lack of 
7 interest, attention deficit syndrome and decline of 
8 intellect. 
9 I printed this off the Web because 
10 a lot of my patients go to all the websites. This 
11 is not from the Lyme Disease Foundation site. This 
12 is from the Mercury Fillings Are Toxic site. The 
13 same exact list you'll find if you want to go to 
14 "The Yeast Connection", Dr. Crook's Website, and 
15 that is that yeast overgrowth in the bowel is 
16 causing these symptoms, you will find that same 
17 list. 
18 That does not mean there isn't 
19 chronic Lyme. And I've treated advanced Lyme 
20 Disease with the mental fogginess, cognitive -- it 
21 really does exist. But you do have to be careful in 

114 
1 saying, "Well, this is unique to this disease" 
2 because everybody is seizing on the same symptoms. 
3 And, in fact, I've had referred to my office 
4 patients seen by physicians claiming to specialize 
5 in Lyme Disease who got no better on their IV 
6 Rocephan and then were told, "You know what? It's 
7 that yeast overgrowth in your bowel. Look at all 
8 the yeast you have in your bowel. If you look at 
9 this site, you'll see that all your continuing 
10 symptoms are from that." And then were on intensive 
11 antifungal therapy. Finally coming to see me 
12 because there hadn't been improvement when they did 
13 that. 
14 And another issue is -- and I 
15 don't know if it's in existence. I haven't called 
16 recently. Is that there are some people who take 
17 advantage of very sick individuals. And that 
18 includes some companies, IV companies. There was a 
19 site, 1-800-TICK-BITE. I don't know if that number 
20 still works. Was for an IV therapy company in New 
21 Jersey. And if you called, you could arrange for IV 

115 
1 treatment for your Lyme. 
2 I had my secretary call a few 
3 years ago and just claim chronic headaches. She was 
4 told to say nothing else. That's all she had was 
5 chronic headaches and that she had tested negative 
6 for Lyme Disease. The woman at the other end of the 
7 phone said, "It sure sounds like Lyme to me. And I 
8 can refer you to a physician for the IV therapy." 
9 Personally -- this is over a 
10 decade ago -- I was offered -- we're in a touchy 
11 area of kickbacks and things these days in this 
12 state. But companies would offer me several hundred 
13 dollars a week per patient I referred for IV 
14 therapy. And the justification was "Well, you're 
15 going to be overseeing toxicity and any problems the 
16 patient has." This is in addition to any office 
17 visits or things of that sort. 
18 So in the midst of all the true 
19 suffering, there are always people who are looking 
20 to profiteer or to do something about it. And, you 
21 know, I really do hope -- and I think one thing 

116 
1 everybody will agree with in here is that the Lyme 
2 testing has never been very good, that we do have to 
3 get better tests. It's very difficult to 
4 distinguish. And while there are false negatives, 
5 as was brought up, if you treat it very early or 
6 have early disease, there are also false positives. 
7 People come in with acute Hepatitis B, endocarditis, 
8 well-documented, who have just positive ELISAs, 
9 negative Western Blot test. It's an antibody like 
10 everything else and it cross-reacts with many 
11 things. 
12 There was also some talk -- I'd 
13 like to point out, as was brought up, about the 
14 young child who had severe disabling disease, that 
15 the Lyme test remained positive. As I think most of 
16 the audience knows, even the most successfully 
17 treated person here were not expecting the serologic 
18 test for Lyme to turn negative. That's a body's 
19 antibody. That's a response. Just as my serologic 
20 test for measles is still positive because I got the 
21 measles antibody when I was a kid. That doesn't