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15 MR. GOTTFRIED: Thank you. We're going

16 to modify our order a little bit again and have

17 several witnesses come as a group.

18 And that will be Robert Clydesdale,

19 Evin White, Lia McCabe and Joanna Amato.


21 MR. GOTTFRIED: Mr. Clydesdale?


23 evening. My name is Robert Clydesdale. Thanks for

24 affording us the time to talk to you today. I'll try

25 to make this brief for you. I know you all want to



1 get home.

2 My story began in May of 1987. While

3 stacking some firewood, I was bitten by a deer tick.

4 It was discovered a number of days later. It was

5 engorged, and removed, and we sort of forgot all

6 about it. Within a week or so, I became acutely

7 sick. I developed severe head and neck pains,

8 stiffness, photosensitivity, and nearly completely

9 neurological shutdown. I was placed in the isolation

10 ward in a local hospital in Newburgh as a precaution.

11 The doctors there originally and initially suspected

12 spinal meningitis or encephalitis of some kind, but

13 testing at that time failed to disclosure the source

14 of the illness, and it seemed to resolve itself

15 within a few weeks.

16 The illness then returned over the

17 following months, causing a severely debilitating

18 medical conditions. By 1994, seven years later, I

19 had missed 345 days of work and had spent nearly 100

20 days in the hospital. Even when not hospitalized, I

21 lived in a constant state of infection. And the

22 doctors were quite puzzled. It was inconceivable

23 that this condition wasn't improving. By 1994, I was

24 blind in the left eye. I couldn't walk without a

25 cane or a walker. The head pain had become so bad I



1 was unable to function for considerable periods of

2 time. I didn't know family members; I didn't know

3 friends. I had a severely debilitating cognitive

4 dysfunction and required in-home nursing several days

5 week.

6 Prior to being sick, I had enjoyed a

7 fulfilling life. I had a very successful career as

8 an executive in the software industry, I had been

9 very athletic, spent a lot of time cycling and

10 swimming and running, and here I was disabled.

11 So, in 1994, I went on disability,

12 resigned my position. And at that time I met a

13 wonderful doctor who decided to really take this

14 thing by the horns and see if he could find what it

15 was. He determined I was suffering from a late-stage

16 neurological manifestation of Lyme. Both blood

17 testing and spinal fluid testing disclosed it.

18 Despite treatment with what was supposedly the

19 standard course of antibiotics, the condition

20 continued to deteriorate. It had gone untreated for

21 eight years, it was deeply entrenched, and it was

22 determined that a more aggressive approach would be

23 necessary.

24 We spent at that time then nearly eight

25 months trying to get approval for intravenous



1 antibiotics, fighting with the insurance companies.

2 The appeal process was daunting. The physician

3 working on behalf of the health insurer placed real

4 unreasonable burden of proof on the doctors. Had it

5 not been for their perseverance, I think at that

6 point my life may have been over, as some of these

7 stories you've heard of. The insurer did eventually

8 agree to the long-term treatment protocol requested

9 by the doctors.

10 I remained on intravenous antibiotics

11 for 20 months, across a three-year period. My health

12 would improve, I would come off intravenous

13 antibiotics, and my health would deteriorate a little

14 bit again. I would relapse after several months.

15 And we continued this pattern over about five cycles.

16 And then all of a sudden, at about the 18th month

17 mark on treatment, I didn't relapse. We continued

18 the treatment for another eight weeks, and I seemed

19 to have recovered from that point forward.

20 Although, I haven't recovered 100

21 percent, the delay in treatment of seven or

22 seven-and-a-half years seems to which caused a

23 seizure disorder - excuse me - and there are some

24 cardiac complications, but other than that my health

25 has been pretty much restored. I feel very lucky for



1 that and for the perseverance of those doctors. Many

2 patients that I've talked to since then are accused

3 of being malingerers and hanging on to this disease.

4 Many of these - excuse me - are educated people, math

5 professors, people like that. As you had heard

6 earlier today, these are not malingerers. I was not

7 a malingerer. Since that time, I went on to find --

8 to be the founder of a patient advocacy group that

9 worked on behalf of all patients and all diseases, in

10 all states, to help them with insurance recovery.

11 You heard earlier testimony today, I

12 think it was from someone from Oxford, who placed a

13 high value on the external review process as

14 definitive in assessing or determining the

15 applicability of long-term treatment for Lyme. A

16 study conducted by the Henry J. Kaiser Foundation and

17 Georgetown University School of Public Health Policy

18 found numerous barriers to the use of such programs.

19 Of those denied care, 96 percent never appealed the

20 denial: Most because it was too confusing; many

21 because they didn't feel it would result in a

22 reversal of the determination; many don't know their

23 rights or that even such a process exists in their

24 respective state.

25 And this can be really illustrated by



1 examining New York State's External Review Program.

2 For the period of July '99 through June of 2000, New

3 York State received 1,400 application for external

4 review; 400 of those applications were rejected, 29

5 percent of them for incompleteness, for failure to

6 provide the required documentation and paperwork.

7 This was why we founded Patients

8 America in 1999. As chairman, our company's mission

9 was to provide support to those patients in proving

10 the medical -- providing the medical research,

11 records management and support for the internal

12 review of external review process. However, just

13 this past year, our medical directors were forced out

14 of Patients America by the State OPMC. These medical

15 directors were doctors who treat Lyme disease

16 aggressively when they see fit. Relative to a Lyme

17 case, they were investigated. It was found out they

18 were the medical directors of an organization that

19 provided support to patients, and they were forced

20 out.

21 I guess we're not to supposed to really

22 talk about that. I don't know why that is. I have

23 no medical license and I guess I can. But at this

24 point there is a bill that's floating around in the

25 Senate, the Kennedy-Daschle Bill. Many of you are



1 familiar with S6. There is even provision in that

2 bill, Section 135, Protection for Patient Advocacy.

3 This section is to protect health care providers for

4 acting as advocates on behalf of the patient. But

5 that seems to not be able to happen in New York

6 State. This process seems unfair and has probably

7 cost many patients a lot of support that our

8 organization could have given them.

9 So, I would hope that you could find

10 today to help us out and to try to do something to

11 stop OPMC from pushing these doctors around. The

12 problem isn't going to get better, it's only going to

13 get worse. And as Dr. Robert Shoan (phonetic

14 spelling) had said in his ABC News interview the

15 problem is moving north in New York State, and

16 eventually it will be in everyone's backyard.

17 MS. O'CONNELL: When you say the

18 problem is moving north, is that because of the tick

19 population --


21 MS. O'CONNELL: -- and the migration?


23 MR. GOTTFRIED: Okay. I think we'll go

24 through the whole panel and then do questions.

25 Mr. Clydesdale, I know you may not be



1 able to stay through the whole thing, but I think

2 that will best.

3 Mr. White?


5 MR. EVIN WHITE: I'd like everyone to

6 realize that today I'm only able to be here because

7 my doctors had the compassion and perseverance to

8 study and understand the confusing and complicated

9 illness that chronic Lyme disease is. Lyme disease

10 is a faceless thief of many lives and has consumed

11 many years of my short life.

12 MS. MAYERSOHN: We're losing part of

13 the testimony. He should lower the mic.

14 MR. GOTTFRIED: If you could point the

15 mic directly towards you.

16 MR. WHITE: Oh, I'm sorry. Do you want

17 me to start over again or --?

18 MR. GOTTFRIED: No, no.

19 MR. WHITE: It's a little finicky.

20 Today you will hear a story that is

21 common to the lives of so many others. The purpose

22 of my story is not for compassion or sympathy, but

23 clearly for a call to action.

24 Eleven years I was diagnosed with Lyme

25 disease. Fortunately, it was recognized early.



1 Unfortunately, I was given the textbook treatment we

2 all know to be one month of antibiotics. As symptoms

3 of headache, fatigue, lack of concentration, and

4 deterioration of muscle strength persisted, after the

5 one-month period my diagnosis was reevaluated and

6 changed to psychologically-induced illness. I

7 initially accepted this on the confidence that these

8 were medically licensed professionals, but the lack

9 of treatment only antagonized my symptoms. And the

10 headaches were chronic; the physical atrophy and

11 minimal mental concentration persisted.

12 This lack of treatment over time left

13 me completely atrophied, with a less than functional

14 brain. It was discovered over two years later that

15 this lack of treatment had allowed the disease to

16 penetrate the blood-brain barrier, causing

17 hypoperfusion in my brain. I have limited motion,

18 less than limited speaking ability, and no competency

19 for school work. At the age of 13, this momentous

20 entrance into teenhood was celebrated bedridden with

21 a misunderstood case of chronic Lyme disease. At

22 this point I was simply a guinea pig, poked this way,

23 prodded that way. I was being studied by doctors and

24 nurses like a bad science experiment, tested and

25 questioned: Why can't you do this? What's wrong



1 with you?

2 While people questioned and criticized,

3 I grew hopeless and depressed. I was simply at my

4 worst, physically depleted and emotionally drained.

5 At the time my weight dropped to 60 pounds, merely a

6 shadow of my former self. The pain throughout my

7 body was unbearable. And with all the confused

8 medical professionals surrounding me, I felt that my

9 fate was very uncertain. Just to give you a clearer

10 image of these, because I can't even describe my

11 condition in words, I have some videotape from that

12 time, actually, that I'd like to show you a short

13 clip of, just for about 20 seconds.

14 (The videotape was played.)

15 MR. WHITE: All right. That's it.

16 After two agonizing years of hospital

17 life, I was sent home. This was where my whole

18 outlook changed. I was introduced to Dr. Buroscano

19 (phonetic spelling), who would inspire my recovery.

20 Escorted into his office in a wheelchair, propped up

21 by a back brace, he began to tell me that there are

22 people out there like me, and it takes a lot of work,

23 but with his assistance I could make great strides.

24 I was able inspired. I was to take all of the anger

25 and hopelessness and focus it on building myself up



1 because a doctor understood and believed in me.

2 With proper rehabilitation, sufficient

3 antibiotic treatment and encouragement from my

4 doctor, I finally, after years of feeling like a

5 medical castoff, began to believe in myself. I had a

6 lot of work to do; focus on relearning, reading and

7 other simple academic concepts, talking again and,

8 most of all, walking. It was the constant

9 encouragement of my visits and the improvements I had

10 seen from the long-term antibiotic treatment that

11 inspired me to push on, exercise more and get my mind

12 back in focus. Over the course of two years, my

13 extra efforts and the support of family and friends,

14 I was beginning to regain my strength and mental

15 ability.

16 At the age of 16, while still hampered

17 with muscle weakness, fatigue, difficulty with

18 educational material, not to mention four years

19 without formal schooling, against the advice of many

20 I reentered school - at my request - the tenth grade.

21 Two years after being bedridden in the hospital, I

22 found myself lingering through the halls of high

23 school. Granted, it was tough bridging the four-year

24 educational gap. I still had the momentum, with

25 fail-safe determination, and I was able to graduate



1 in three years and gain acceptance to a competitive

2 academic college.

3 During my recovery, the doctor's

4 efforts inspired me to let people know about Lyme

5 disease. Between the ages of 14 and 18, I made

6 appearances on news shows, magazines, and even

7 testified in Congress. This gave me a sense of

8 purpose. Whether in a wheelchair or walker, I would

9 like let people know what Lyme disease is.

10 Here I am, at age 23, no symptoms to

11 speak of. I consider myself a living, walking

12 testament to the importance of Dr. Buroscano's

13 significance and necessity to the medical community,

14 as well other Lyme professionals. I may be

15 considered a Lyme success story, but I'm not, and

16 will not feel vindicated until I know that everyone

17 out there suffering from the plight of Lyme disease

18 has the opportunity to receive the proper and

19 necessary treatment as I did.

20 Lyme disease patients and doctors

21 undergo a great deal of scrutiny from a rough

22 opposition of doctors. I may not be able to contest

23 their claims with scientific rebuttal, as I'm not a

24 doctor, but Lyme disease is my life, and for the past

25 11 years it has become my expertise. I can assure



1 you that I have seen an outstanding number of

2 patients out there sick as I was, and who are in

3 desperate need of proper treatment from experienced

4 Lyme doctors. The Lyme community did not choose to

5 fight this battle; this battle chose us. And we're

6 fighting. But in this country, battles can be lost

7 in the midst of red tape and bureaucracy, and yet so

8 many people are sick, without help, just as I was.

9 So, we're here today to extend our hand

10 for assistance. Assemblymen, I humbly beg of you to

11 take our hand and help us by constructing a

12 resolution to stop the OPMC from prosecuting our

13 much-needed Lyme doctors.

14 Thank you.


16 MS. JOANNA AMATO: My name is Joanna

17 Amato, and I was clinically diagnosed with Lyme

18 disease in 1992. I was started on oral antibiotics

19 and moved to IV treatment. During this extended

20 treatment, I never showed any improvement and, in

21 fact, became more and more debilitated. I was

22 clinically diagnosed, I suspect, in part, because I

23 live in an endemic area and had some symptoms that

24 were consistent with Lyme disease, but was perplexed

25 as to why my Lyme test came back negative.



1 I was given countless and unnecessary

2 pills to mask symptoms that had only occurred after

3 antibiotic treatment, even though I thought it was

4 odd that I never had any positive tests that pointed

5 to a Lyme diagnosis. I was told this was common with

6 late-stage Lyme. Whatever suspicions and questions I

7 had, I received answers that seemed reasonable. I

8 believed my doctor when he said, "I have lots of

9 patients like this." Even though I felt this was not

10 normal, and could not be normal, I was assured that

11 it was, and that these were normal symptoms and

12 complications from Lyme disease. I would schedule

13 another appointment for six to eight weeks. This

14 would go on for seven-and-a-half years.

15 As my health spiraled out of control,

16 there seemed to be outrageous tests, diagnoses and

17 therapies that popped up. These new and bizarre

18 tests would unbelievably come back positive and,

19 therefore, confirm the newest and latest suspicion.

20 As my health deteriorated, I developed countless food

21 and medication allergies that I never had before

22 antibiotic treatment. I was told that the allergies

23 were stemming from the Lyme disease, but I could not

24 treat the Lyme disease because of the severe

25 allergies. As the allergies progressed, my health



1 declined even more. It was a vicious cycle that was

2 becoming more and more unbearable, but strangely,

3 there seemed to be no escape.

4 The ultimate horror came on January 26,

5 2000, when my mother, Angela, savagely died from the

6 same complications my sister and I were faced with.

7 We knew it was only a matter of time before we

8 suffered the same fate. Through mere chance, my

9 sister and I found a door to escape from the locked

10 cell. We found a competent, caring and board

11 certified allergist, who, on our first office visit,

12 suspected a severe yeast overgrowth. We thought at

13 first this diagnosis seemed too simple to be the

14 culprit of our mysterious chain of symptoms. But to

15 our surprise, he was exactly on target. Because of

16 this great man, my hero, Dr. Morton Teich, I am

17 standing here today speaking with all of you and,

18 hopefully, educating you on the dangers of long-term

19 antibiotic use. The damage that has been done will

20 take years to reverse, and the needless medications I

21 took in the past had potentially dangerous and

22 possibly lethal side effects. The fact is that

23 antibiotics have serious side effects. And for a

24 physician to give a patient long-term antibiotics, he

25 must be absolutely certain with legitimate laboratory



1 data that the diagnosis was correct. That was the

2 hardest pill for me to swallow.

3 Thank you.

4 MR. GOTTFRIED: Thank you. Lia McCabe?


6 MS. LIA MCCABE: I would like to thank

7 each and every one of you for taking the time to hear

8 my story.

9 Before I got sick, I was working for an

10 investment banking company in New York City. I was

11 taking classes for my MBA, was married, and enjoyed

12 sports. In 1992, I realized something was wrong. I

13 was 25 years old. I was having difficulty with

14 memory, confusion, stumbling, migraines and extreme

15 exhaustion, just to name a few. I saw at least 15

16 doctors and specialists who misdiagnosed me with

17 things such as M.S. and chronic fatigue. Finally, in

18 1993, a doctor tested me for Lyme disease. It was

19 positive. What a relief, a diagnosis. I could get

20 on with my life.

21 Oral antibiotics provided some

22 improvement, but not enough, so my doctor recommend

23 IV antibiotics, which was, unfortunately, denied by

24 my insurance company.

25 My symptoms progressively got worse. I



1 went into work one day and did not know where my desk

2 was and I didn't recognize my co-workers. This was

3 one of the scariest days of my life. I went out on

4 disability. My husband had to carry me up and down

5 the stairs because of my pain and weakness.

6 In 1994, I was hospitalized for a

7 work-up. Lyme disease was the only thing that came

8 up positive. Once again the insurance company denied

9 the IV treatment that might offer me some hope. I

10 had already lost my career, my ability to walk and

11 care for myself. It all seemed unreal. I could not

12 comprehend the hospital administrator's words, "You

13 have to decide what nursing home you want to go to."

14 I was in shock thinking, "I'm only 27 years old, I

15 can't -- this can't be happening to me."

16 My incredible parents moved me home

17 with them. When I was at my worst, my mom came into

18 my room to check on me. I was in pain and wanted to

19 scream out to her for help, but I couldn't physically

20 speak or move. She thought I was only sleeping and

21 left. I was terrified. I felt like I was in a

22 coffin and couldn't get out.

23 My parents started to pay for IV

24 antibiotics. Although still very disabled, I showed

25 much physical and cognitive improvement. I was



1 strong enough to use a wheelchair independently and

2 to participate in physical therapy at Helen Hayes.

3 My need for sleep for sleep had decreased to 15 hours

4 a day.

5 Over the next few years, after the IV

6 was discontinued, I notice my symptoms increasing and

7 my quality of life decreasing. Testing by my doctor

8 confirmed central nervous system Lyme with

9 encephalitis. He recommended another course of IV

10 antibiotics and suggested I see a doctor closer to

11 home.

12 In January of 1999, the new doctor

13 tested me for co-infections and found I was also

14 positive for babesiosis. I cannot express my

15 emotions of surprise, then joy, when I awoke one

16 morning after a month of treatment for Babesia and

17 felt the remote control under my leg. It was the

18 first time I had feeling in my legs in years. My

19 drenching night sweats disappeared, my need for sleep

20 decreased, and my energy level improved.

21 I began IV and oral antibiotics for

22 Lyme. Within the first month, my family, my physical

23 therapist, and I all noticed significant

24 improvements. One day someone parked in the yellow

25 handicap lines next to my car. I needed that space



1 to transfer from my wheelchair into my car and was

2 near tears with frustration. I said to myself, "You

3 can do this." Due to my progress, I was able to

4 stand and manage to put the wheelchair away. That

5 day began the first of many functional milestones.

6 Today I am down to 12 hours of sleep.

7 My strength and energy continue to increase. I can

8 wiggle my toes. My memory and confusion have

9 improved. After six years of being trapped in my

10 wheelchair, I've packed it away and removed the ramp.

11 I'm living a life I didn't think was possible. My

12 medical care prior to my current doctor cost hundreds

13 of thousands of dollars. Can you imagine what it

14 would have cost if I had to spend my life in a

15 nursing home?

16 Most of you probably heard about the

17 NIH so-called long-term antibiotic study reported in

18 June. This study used only three months of

19 antibiotics to treat chronic Lyme patients. If I had

20 participated in that study, I'd still be in a

21 wheelchair today. Instead, I'm here before you,

22 walking. I'm lucky. I had medical benefits from my

23 job, a supportive family and dedicated, compassionate

24 doctors who have risked everything to care for people

25 as ill as I. I'm getting my life back again. What



1 happens to all the people who aren't as fortunate as

2 I am? A friend who was on disability was treated

3 with long-term antibiotics and is now off disability,

4 back at work at her previous positions as an RN and

5 social worker. I've submitted her story for your

6 records. I am terrified that my doctor won't be

7 there to help me and others get to that point. I

8 still have my hopes and dreams to have a family, a

9 house and a career. Please, help us.

10 And I would just like to reiterate that

11 I would like your committee to ask the Assembly to

12 make a resolution that there is a legitimate

13 scientific controversy regarding treatment and

14 diagnosis of Lyme disease, and that the OPMC should

15 not be intervening by targeting doctors who treat

16 chronic Lyme disease.

17 Thank you.

18 MR. GOTTFRIED: Let me just say, from

19 listening to all of you, that it is clear that

20 diagnosis and treatment - which are not the same

21 thing - are both things that require training and

22 skill and judgment. And, you know, none of this is

23 simple or clear.

24 Questions?

25 MS. MAYERSOHN: Except that I would



1 suggest that Lia circulate her resolution among the

2 Lyme community and -- as well the legislators, and

3 then send it to the OPMC.

4 DR. MILLER: I would just like to

5 address this to Joanna. And I'm trying to get the

6 total gist of the testimony. I understand there were

7 two things going on: One was the antibiotic

8 treatment for Lyme; and the second was the fact that

9 you developed a significant -- was it a yeast

10 infection or --?

11 MS. AMATO: I developed a severe

12 systemic yeast infection. I had burning in my brain;

13 I had what I thought was classic Lyme symptoms that

14 never went away with antibiotic treatment, since the

15 first antibiotic pill that I ever swallowed, and I

16 was assured that I had Lyme disease. I never had any

17 positive tests that confirmed the diagnosis, and I

18 was clinically diagnosed -- and I had no idea. I had

19 no idea. And it blew up in my family's face. We

20 didn't know that we had this systemic yeast

21 overgrowth.

22 DR. MILLER: And, again, I think that,

23 clearly, we have to be very careful. The fact that

24 so many people are successfully treated with

25 long-term antibiotics should not be diminished by the



1 fact that you have this --.

2 MS. AMATO: No, and I think that's

3 wonderful. I think if you truly have Lyme disease,

4 with proper data, I think it's wonderful. But I also

5 feel that a doctor should have laboratory data as a

6 backup.

7 DR. MILLER: Well, let me -- since the

8 laboratory data is so difficult to get, I think that

9 what we should be hoping for is that the medical

10 professionals who are treating our patients continue

11 to monitor them carefully enough so that we don't

12 stay single-tracked and overlook something else

13 that's happening. Clearly, in some cases, the

14 treatment may be improper. In some cases, with the

15 best of treatment that is totally proper, there can

16 be other things that happen. And it's simply a

17 matter of being vigilant.

18 I'm glad that you're here. Clearly, we

19 have to keep in mind -- you know, it could be a great

20 idea, but a great idea done improperly doesn't make

21 it a great event. And so I think -- and I'm sure

22 that the medical profession in general would agree

23 that we have to be vigilant. We can't be trying to

24 cure one disease while we're creating another. But,

25 I mean, from my perspective, what happened to you --



1 MS. AMATO: My family.

2 DR. MILLER: -- was a separate problem,

3 and it's not one that should prevent us from

4 considering the appropriate use of antibiotics even

5 in those cases.

6 MS. AMATO: Antibiotics, if used

7 properly and safely, are very effective. But

8 everything that everyone swallows, even a Tylenol,

9 has consequences that have to be weighed.

10 DR. MILLER: Right. And that's why I

11 think that those of us who sit on the Higher

12 Education Committee, with the responsibility of

13 overseeing the scopes of practice, try to be very

14 careful about limiting who can do what, based on

15 their education. So, we try to be very mindful,

16 but -- and, again, I think you make an interesting

17 point. In spite of all of the testimony we've heard

18 today, we have to remember that there is still the

19 potential for misdiagnosis. There's still the

20 potential for the misuse of antibiotics. And I'm not

21 saying that's insignificant. What I'm saying is

22 that, considering the number of people who have been

23 infected with Lyme, or who have recovered adequately

24 or are on their way to recover with the use of

25 long-term antibiotics, we have to consider what



1 happened to you as an important message, to make sure

2 we keep observing everything and we don't become, you

3 know, too lackadaisical or to blase about how we're

4 handing out antibiotics. And so we need people like

5 you to remind us that, you know, once you start the

6 regimen, you still have to follow the patient

7 carefully. So, I'm glad that you were here, but --.

8 MS. AMATO: And a lot of the yeast

9 symptoms overlap Lyme symptoms and other diseases.

10 And a clinician really needs to sort through those

11 issues and find out what is really going on before

12 they cover it up with putting a label on it like Lyme

13 disease. That's what happened to me.

14 MS. MAYERSOHN: That's not always so

15 easy.

16 MS. AMATO: Excuse me?

17 MS. MAYERSOHN: Sometimes you have to

18 weigh the patient's condition and decide whether --

19 and it should be up to the doctor to make the

20 determination, along with the patient, on whether the

21 use of long-term antibiotics is appropriate. Have

22 you had any serious side effects as a result of the

23 antibiotics?

24 MS. AMATO: I almost died numerous

25 times. I had allergic reactions. I couldn't get out



1 bed. I've been homebound for ten years. My brain

2 started to burn. And I started the antifungal

3 treatments. Through a miracle, I found a doctor, Dr.

4 Morton Teich - my sister and I found him - and he

5 said, "I think you have a systemic yeast overgrowth."

6 And he started us on Diflucan, which is an

7 antifungal. And I was very skeptical, but I had

8 nothing else left. My mother had just died at this

9 point from malnutrition. She had been down to three

10 foods. My sister and I were following in the same

11 path. And we tried the antifungals, with a strict

12 sugar-free, yeast-free diet - it sounds crazy - and

13 my allergies started to subside. My immune system is

14 regulating. I was able to sit here all day long and

15 talk to you here today. Without this man, I would

16 not be here.

17 MS. O'CONNELL: Joanna, thank you for

18 your testimony today. You're very brave for coming

19 here today. Not only have you personally been

20 through to hell and back, but to lose your mother as

21 all of this was going on -- it's almost

22 incomprehensible to me.

23 I just wanted to ask you if anyone in

24 your family, you, your sister or your mom -- were any

25 of you ever confirmed to have Lyme disease?



1 MS. AMATO: My sister, I'm not sure. I

2 don't believe she had any positive tests. I never

3 had positive Lyme tests during the antibiotic

4 treatment. My mother, in fact, was bitten by a tick.

5 She did have a positive -- I believe, a Stony Brook

6 Lyme test.

7 What happened was, we all got IV

8 antibiotics at the same time, and we all developed

9 this super yeast infection. My sister and my mother,

10 their tongue started burning, and they thought it was

11 food allergies. And it just snowballed very, very

12 slowly. And knowing too late that tongue burning is

13 a symptom of yeast, they could have got the nutrition

14 that they needed. My sister was -- her diet was

15 severely limited. My mother, for four years, was

16 down to three foods; chicken -- turkey, water and

17 bread. And no one should have to die like that.

18 And, you know, I'm just here to make people aware of

19 what can happen with the yeast and antibiotics.

20 MS. O'CONNELL: Absolutely. Thank you

21 very much for your testimony today, Joanna.

22 DR. MILLER: And I have to tell that we

23 sometimes -- and, again, even in the dental office,

24 with a routine application of antibiotics for a known

25 infection can produce problems with yeast infection.



1 We all have to monitor what's going on. But the rest

2 of you -- especially Lia, who works for me, is -- so,

3 I could attest to the fact that she is really good.

4 I want to thank you for coming, because

5 certainly your testimony goes to the heart of the

6 problem. Which is that, in spite of what some of the

7 physicians or some of the people here said, these

8 diagnoses are not easy make. You can't always depend

9 on being diagnosed quickly enough so that you get the

10 treatment you need quickly enough, nor do we have

11 insurance companies or others so willing to pay for

12 it so that you can get well quickly enough. And so,

13 you know, your stories are ones that we'll certainly

14 keep in mind.

15 And that's the whole thing. Again,

16 it's a matter of proper treatment. You have to make

17 sure -- you just have to monitor patients. Most

18 physicians, most people who do provide care for

19 patients, do, in fact, you know, make sure or watch

20 what's going on. That's why we don't -- fortunately,

21 we don't have more stories like yours.

22 MS. AMATO: I believe there are more

23 stories like mine. And, you know, I just -- I want

24 to make people aware. That's what I want to do. I

25 don't want anyone else to have to die.



1 DR. MILLER: Well, thank you all for

2 your testimony.

3 MR. GOTTFRIED: Thank you.

4 MS. AMATO: Thank you.

5 MR. GOTTFRIED: The next witness is Dr.

6 Howard Hindin of the Foundation for the Advancement

7 of Innovative Medicine.




11 you --.

12 MR. GOTTFRIED: Were you sworn?

13 DR. HINDIN: Yes.

14 I want to thank you all for the

15 opportunity to be here, and commend you all for being

16 here for almost nine hours and being able to have

17 such attention for everything that was said. I don't

18 know how I would have been able to do it.

19 I am the current president of FAIM, the

20 Foundation for the Advancement of Innovative

21 Medicine, and I'm a dentist. I don't treat Lyme

22 disease, and I -- neither me or any members of my

23 family have Lyme disease, but I am very concerned, as

24 our organization is, about patients' rights.

25 FAIM is an organization of patients,



1 practitioners and suppliers working together for

2 the -- on the issue of patients' rights and freedom

3 of choice in health care. And listening to all the

4 testimony today, it's so hard to unravel all the

5 different opinions and different scientific

6 approaches. But the bottom line is, there are

7 thousands of patient who have needs and don't seem to

8 be able to get the treatment they need, and there

9 seems to be a shortage of doctors who are able to

10 provide that treatment. And I think that from --

11 what we as an organization have worked for is to have

12 patients have the freedom of choice and have doctors

13 be available to provide that treatment. I'm not

14 going to go through my whole testimony, I'll just

15 make some points to summarize some points in my

16 testimony.

17 One of our concerns has been the

18 possible relationship between insurance companies and

19 OPMC in the investigation of doctors. There seems to

20 be a lot of the investigations are brought forth not

21 by patient complaints, and it would seem to be

22 brought forth by complaints from insurance companies.

23 FAIM has been very active in trying to

24 get the Medical Necessity Bill passed, and I want to

25 thank all the members of the Committee for being



1 champions of that bill and getting it passed

2 unanimously in the Assembly. During the process of

3 our advocating Medical Necessity Act, our lobbyists

4 had repeated conversations with representatives of

5 managed care lobby, in which they refer to Lyme

6 disease of the great example of how dangerous the

7 Medical Necessity Bill was. Reportedly, they use the

8 Lyme example, even with lawmakers, citing that if our

9 bill passed, insurers would have to cover long,

10 chronic Lyme disease treatment as a medical

11 necessity. They went so far as to put the example

12 into a memo. We find this very astonishing and a

13 concern.

14 It's not only a concern of the doctors

15 who are being investigated now, who treat Lyme

16 disease, but what it does, I think, is it puts -- it

17 limits the potential of other doctors to want to

18 treat these patients. In 1994, we were instrumental

19 in getting the Alternative Necessity Bill passed,

20 which said that doctors should not be persecuted

21 simply because they do alternative therapies. Prior

22 to that, when we would run a symposium to educate

23 doctors on alternative medical therapies, our

24 attendance was very poor. Right after this bill was

25 passed, with the belief that this would provide



1 greater freedom, our attendance doubled and tripled

2 at symposiums after that. Prior to that, we had

3 doctors who attended the symposium, who didn't want

4 to register or have their names seen on a list

5 because they were members of hospitals or other

6 organizations who felt that, should it get back to

7 their peers, they would have a problem.

8 During the day, it was mentioned

9 that -- about the doctors who treat Lyme disease and

10 their passion. Well, I think the doctors who do that

11 have passion and the intelligence and the courage to

12 try new and reasonable treatments. But I think that

13 what goes on in the environment in this state is very

14 discouraging. First of all, they're looked askance

15 by their peers; second, they are threatened by review

16 by insurance companies; and third, by investigation

17 by the OPMC. We know of doctors in our organization

18 who have stopped treating Lyme disease patients for

19 the very fact that they don't want to jeopardize

20 their license by treating Lyme disease patients,

21 after seeing what happens to other doctors.

22 Recently, Dr. Joseph Buroscano -- his

23 hearing was over and was exonerated, and we felt that

24 this was a very good thing, because it -- not only

25 was it good for him and his practice and for the help



1 he provided for his patients, but also it would

2 encouraged more doctors to feel a little bit more

3 comfortable that the OPMC hearing process could be

4 fair. However, we heard -- I just heard today that

5 the Health Department is appealing his case, so he

6 may have to go back and go through the whole process

7 again.

8 So, the one thing that I want to add in

9 my testimony is -- one other thing. I have here --

10 this is a copy of the "New York Consumer Guide to

11 Health Insurers." And just in response to some of

12 the comments that were made by the doctor from Oxford

13 this morning, this is from September 1999, statistics

14 on utilization review appeals. And it talks about

15 two parts of Oxford. One is the Oxford HMO, and it

16 says it was ranked 23rd of 24 companies evaluated for

17 utilization review appeals. Oxford's HMO plan

18 received 3,079 complaints of the total of 14,862

19 filed for the year for all health plans; 36 percent

20 of utilization review complaints were overturned in

21 the patient's favor. So, while the percentage is 36,

22 the total amount was much greater.

23 For the Oxford commercial insurance, it

24 was ranked 20th of 21 companies evaluated for

25 utilization review appeals. And Oxford commercial



1 plan received 2,534 complaints of the total 6,348

2 filed for the year; 57 percent of these complaints

3 were overturned. And their total complaint ranking

4 was ranked 49th of 49 companies evaluated and also

5 had the most complaints of any company in New York

6 State.

7 In the 2001 statistics, Oxford overall

8 was ranked 47th of 52 companies evaluated. Oxford

9 received the most complaints, 4,798, with a complaint

10 ration of 0.677. Oxford's access to care and service

11 for its HMO ranked significantly worse than the New

12 York HMO average.

13 I think that we have to look at the

14 science - and I think you have a very difficult job

15 in making a decision - but I think the bottom line is

16 people need to be served. That's what we as an

17 organization have been doing for 15 years -- not only

18 on the issue of Lyme disease; on other issues. And

19 the problems that Lyme disease patients have other

20 patients have, just like chronic yeast patients have,

21 chronic fatigue patients, where there is no one

22 diagnosis. It's so simple if somebody has a strep

23 throat, you give them an antibiotic, you know in a

24 week they're going to be better. But more and more

25 of our population consists of people who have



1 complaints that don't fall into one easily diagnosed

2 category, where there's not an answer. But these

3 people need the same kind of care and attention, and

4 have the doctors available to provide that, that

5 everybody else has.

6 Thank you.

7 MR. GOTTFRIED: Thank you. As you

8 probably know, in January or February - we haven't

9 set the date yet - we will be holding a hearing on

10 OPMC and its operations, and we'll be looking into a

11 lot of the issues that you and others have raised.

12 Questions?

13 DR. MILLER: I just have one comment.

14 And I think, clearly, that Oxford is just poorly

15 understood. I don't think we could appreciate the

16 efforts that they're making. Those people in the

17 mental health field constantly clamor for parity.

18 They claim tat people with mental health problems do

19 not receive adequate medical care. Oxford is just

20 dedicated to parity; they don't want people with any

21 other illness to receive medical care either. And I

22 think that effort is just not fully appreciated.

23 MR. GOTTFRIED: I think one of the

24 points of this report is how statistics can be

25 misleading. Oxford could say only 37 percent of



1 their decisions were overturned, but when you look at

2 the total number it's huge. And if you listen to

3 anybody presenting facts and you don't hear all the

4 sides, it can be very confusing.

5 Any other questions?

6 Okay. Our next and last witness is

7 Norman Rosenthal.



10 little foggy now. I've gone past that point, so I

11 might stumble over a few words.

12 I'm Norman Rosenthal. I'm a Lyme

13 activist and support group leader from Queens, New

14 York. I reside in the 27th Assembly District.

15 Many of the people in front of you are

16 support group leaders and Lyme activists and, as

17 such, have personally met with or been in contact

18 with hundreds, if not thousands, of Lyme disease

19 patients. While we are not medical professionals, by

20 virtue of our experience with patients and our

21 attendance at medical and scientific conferences, and

22 our own research of the medical and scientific

23 literature, many of us are more comprehensively

24 versed in many aspects of Lyme disease than all but a

25 few dozen physicians worldwide.



1 As I expected to be one of the last

2 speakers here today, while composing this talk, I

3 worked under the assumption that the following points

4 have been demonstrated or touched upon by previous

5 speakers:

6 That there is a significant controversy

7 in the medical community over the appropriate

8 treatment of persistent or chronic Lyme disease;

9 That there is no definitive study that

10 demonstrates what level of dosage or length of

11 antibiotic therapy is necessary to completely

12 eradicate the Borrellia burgdorferi spirochete;

13 That there is no definitive test for

14 the presence of the Borrellia burgdorferi spirochete,

15 therefore, no treatment studies can come to

16 reasonably definitive conclusions;

17 That testing and treatment is

18 complicated by the existence of three major

19 subspecies of Borrellia burgdorferi, and further

20 complicated by the existence of roughly 300 known

21 strains;

22 That even advocates on both sides of

23 the medical controversy are now recognizing that

24 there are pathological co-infections of Lyme disease,

25 whether these co-infections are contacted from the



1 same Ixodes Scapularis tick that transmits Lyme

2 disease, or whether these co-infections originate

3 from other environmental factors;

4 That Lyme disease is often misdiagnosed

5 as chronic fatigue syndrome, fibromyalgia, M.S.,

6 depression, bipolar disorder, Alzheimer's disease,

7 ALS, or any of a number of neurological or

8 psychiatric disorders;

9 That Lyme disease has much in common

10 with syphilis, also a spirochetal disease;

11 That Lyme disease cases are under

12 reported by a factor of ten.

13 We as support group leaders, as well as

14 physicians in our community, have observed that the

15 longer Lyme disease goes undiagnosed or is

16 undertreated, whether by way of dosage or duration of

17 therapy, the greater are the chances that the patient

18 will be sicker and more difficult to treat down the

19 road. Our experience has taught us that for these

20 types of cases, perhaps 50 percent of advanced Lyme

21 patients will be able to return to normal lives after

22 about six months of intensive antibiotic therapy.

23 For about ten percent of us, it takes many years.

24 It is from this ten percent that the

25 support leaders and activists originate. This is



1 natural, since once a patient is cured, such a

2 patient does not know or does not need to know the

3 possible ongoing problems of persistent or chronic

4 Lyme disease. Of course, this remaining ten percent

5 has a motivation to become support group leaders and

6 further explore all aspects of the disease, whether

7 medical, scientific, legal, political or social.

8 The primary role of the support groups

9 has become to refer patients to physicians capable

10 and willing to treat advanced, long-term, persistent

11 and chronic Lyme disease.

12 So, why are we here today? The panel

13 before us does not have the qualifications to rule on

14 the medical and scientific validity of our arguments.

15 The panel cannot cure us of Lyme disease. However,

16 the panel can provide a remedy to the cause of our

17 difficulty in obtaining physicians who are qualified

18 and willing to treat the Lyme disease.

19 The obstruction of our ability to

20 obtain proper medical treatment can be summed up in

21 one acronym - OPMC.

22 The Lyme disease controversy has become

23 so acrimonious that physicians on both sides of the

24 issue have developed personal animosities towards

25 each other. Not only has this hindered the



1 development of more effective treatment, but it has

2 resulted in some physicians instigating OPMC

3 investigations against our physicians and testifying

4 against our physicians.

5 Looming in the background are the

6 managed care and insurance companies, who, as

7 everyone knows, like to minimize their expenses. And

8 Lyme disease is an expensive disease if not caught

9 early. It can cost thousands of dollars a month to

10 treat. However, the point that seems to be lost by

11 many insurance companies is that the longer the

12 treatment is put off, the more expensive it will be.

13 We speculate that the motives of the insurance

14 companies are augmented by the concept that, unlike

15 AIDS patients, we do not have the grace to die.

16 However, there have been deaths from Lyme disease,

17 and we have documentation.

18 Due to the animosity in the medical

19 community and the influence of the insurance

20 companies, Lyme physicians have been targeted for

21 prosecution by the OPMC well out of proportion to

22 their numbers. This has had a chilling effect on the

23 Lyme disease treating doctors who have not yet been

24 under investigation, as well as on other doctors in

25 the greater medical community who are intimated from



1 treating Lyme disease in this climate. While this is

2 happening, more and more people are getting sicker

3 and sicker, and therefore harder to treat.

4 This disproportionate prosecution of

5 Lyme doctors in New York is in an environment in

6 which it is publicly known that doctors guilty of

7 gross malpractice, including maiming patients, are

8 not prosecuted or suffer minimal penalties.

9 Therefore, any OPMC panel seeing a Lyme doctor

10 standing before it will think that this person must

11 really be guilty.

12 What can the legislature do?

13 It is recognized that the medical

14 profession is a licensed profession and that, as

15 such, in order to protect the public good, it is a

16 privilege and not a right to practice medicine.

17 Therefore, all aspects of due process available to

18 the general public are not available to defendants in

19 OPMC investigations and prosecutions. However, even

20 with this in mind, there are certain aspects of due

21 process considerations which are considerably lacking

22 in OPMC investigations and prosecutions.

23 An anonymous complaint, valid or not,

24 can start an investigation of an M.D. which can last

25 for years and be financially ruinous. The original



1 reason for their ability to file anonymous complaints

2 was to protect individuals who could be intimated by

3 physicians. However, a change should be made by

4 which complaints that are initiated or instigated by

5 insurance companies, managed care companies or other

6 institutions be revealed as to source.

7 More ominously, these investigations

8 have become fishing expeditions. Anonymous

9 complaints have lead to repeated pulling of a given

10 doctor's records in order to find anything that may

11 be perceived as wrongdoing. These wrongdoings, real

12 or imagined, may or may not have anything to do with

13 the original complaint. One result of all this is

14 that the doctor is ultimately accused of poor

15 recordkeeping, an accusation easy to make after

16 hundreds of hours of perusing records. A statutory

17 provision for determination of probable cause would

18 counter these abuses.

19 We have had a case where a physician

20 witness who was personally biased against a physician

21 defendant testified that various patients of that

22 physician did not have Lyme disease, although that

23 witness never examined the patients in question.

24 Furthermore, he based his conclusions on what he saw

25 in the patients' charts, while at the same time



1 testifying that the charts were inadequate to draw

2 any conclusions.

3 Physicians are at once accused of

4 overtesting, undertesting, overtreating,

5 undertreating, overdiagnosis, underdiagnosis.

6 Differences in medical opinion are not grounds for

7 discipline under New York State law, nor should they

8 be.

9 Furthermore, patients whose charts are

10 used in the prosecution of a physician should be

11 notified, and they should be allowed to testify at an

12 OPMC hearing at the consent of the patient and the

13 physician.

14 I am not a lawyer, so I am not

15 qualified to submit a codification of the changes

16 that need to be made. Members of the committee are

17 attorneys and have legal staffs.

18 So, why should you listen to us?

19 We vote; insurance companies do not

20 vote. There are tens of thousands of us in New York

21 State who fall in these categories. If you count all

22 the persons in the misdiagnosed categories, including

23 those in nursing homes, at great social cost, the

24 number can exceed 100,000 constituents. In my

25 lobbying activities, I have found that many



1 legislators' lives have in some way been impacted by

2 Lyme disease.

3 Legislation leading to reform of the

4 OPMC is essential to the residents of New York State.

5 I am saying this from the perspective of patients

6 whose physicians practice traditional medicine, not

7 alternative medicine. Many of these physicians have

8 been intimidated by the current climate, making them

9 less enthusiastic about treating Lyme disease. This

10 not only includes physicians specializing in Lyme

11 disease, but general practitioners and practitioners

12 of all types.

13 That's it.

14 MR. GOTTFRIED: By the way, just --

15 well, first to reiterate the point that I made a

16 couple of times today. We're going to be doing

17 hearings on OPMC early next year.

18 Second of all, don't be so apologetic

19 about not being a lawyer. While I am, and am proud

20 of my profession and think that my legal education

21 has served very valuably in my public work, about 70

22 percent of the members of the Assembly are not

23 lawyers; and of the roughly a dozen people on the

24 Assembly staff that in one way or another are

25 involved in the Health Committee's working, I think



1 only one of them besides me is a lawyer. So --.

2 MR. ROSENTHAL: Nettie has two lawyers

3 on her staff, so that should help.

4 MR. GOTTFRIED: Questions?

5 MS. O'CONNELL: Thank you for your

6 testimony.

7 Norman. When you were talking about

8 the physician who was at OPMC and he had another

9 physician --

10 MR. ROSENTHAL: Right.

11 MS. O'CONNELL: -- reviewing his

12 records and drew conclusions --

13 MR. ROSENTHAL: Right.

14 MS. O'CONNELL: -- da-da, da-da, who

15 was this other physician? Is this an expert called

16 in by OPMC or --?

17 MR. ROSENTHAL: A neighbor of yours,

18 Dr. Detweiler.

19 MS. O'CONNELL: Uh-huh. But is that --

20 that's a person who is called in as a separate

21 expert?

22 MR. ROSENTHAL: He was called in as a

23 witness by the prosecuting attorneys for the OPMC, in

24 front of the hearing panel. As a matter of fact, he

25 was the only witness called by the opposing side.



1 And Dr. Ornz (phonetic spelling) -- it was Dr. Ornz's

2 case. Dr. Ornz and Dr. Detweiler had faced each

3 other in court before, and Dr. Ornz had --.

4 MS. O'CONNELL: In court meaning not



7 MS. O'CONNELL: In court --?

8 MR. ROSENTHAL: There was an insurance

9 case, the patient was suing their insurance

10 company -- and I may be a little bit fuzzy on the

11 details, but essentially the patient was suing the

12 insurance company for payment. Dr. Ornz testified in

13 favor of the patient; Dr. Detweiler testified in

14 favor of the insurance company. The patient

15 prevailed, and there has been ongoing animosity --

16 and there is, in general on Long Island, between the

17 academicians at Stony Brook and the actual Lyme

18 doctors who actually treat Lyme disease. I can go

19 into further detail, but you get the idea.

20 MS. O'CONNELL: No, I get the picture.

21 Thank you. Thank you for clarifying

22 that, Norman.

23 DR. MILLER: I just have one comment,

24 Norman.

25 On your last page, it says, "Why should



1 you listen to us?" And it says, "We vote." And then

2 you said you can exceed 100,000 constituents.

3 MR. ROSENTHAL: Yeah, that's why I'm

4 having --.

5 DR. MILLER: Could you give me a list

6 of the constituents in my district? I'd like to

7 personally contact them.

8 MR. ROSENTHAL: I think an Assembly

9 person has maybe between 20 and 30 thousand people

10 who vote for them, so -- they're not all in your

11 district. But Dutchess County does have the highest

12 rate of Lyme disease in New York State. I think

13 maybe Suffolk has the most cases, I'm not sure, but

14 Dutchess has the highest per capita rate.

15 What?

16 MS. O'CONNELL: The highest -- yeah,

17 the highest in the state -- the highest number in

18 Dutchess.

19 MR. ROSENTHAL: Did you want me to

20 elaborate more on that figure or --?

21 DR. MILLER: No, no.

22 MS. MAYERSOHN: Norman, I think you're

23 the only constituent who has approached me, who lives

24 in my district, and has Lyme disease. Other than

25 that, I have never -- in Queens, apparently, it's not



1 the same kind of problem --.

2 MR. ROSENTHAL: Well, there are not as

3 people in Queens --.

4 MR. GOTTFRIED: The appropriate answer

5 is: It's quality that counts.

6 MS. O'CONNELL: Take the advice.

7 MR. GOTTFRIED: It is amazing, though,

8 how you can reduce the volume of a disease in a given

9 area when you have -- when you eliminate the

10 surveillance personnel.

11 Okay. I think we have at long last

12 come to the end of today's hearing. I want to thank

13 the witnesses who testified here today; and my

14 colleagues, who have been here with me today -- which

15 those of you who have not been in a lot of Health

16 Committee hearings -- well, at committee hearings

17 generally in New York, you get the Chair at the

18 hearing, but not often many other members of the

19 committee. So this has been, I think, very

20 significant, the attention you folks have received

21 today. And we will continue to work on

22 recommendations and possible legislation coming out

23 of today's hearing and the OPMC hearing next year.

24 Thank you all. And we're adjourned.




1 I, Kyle Alexy, do hereby certify that the

2 foregoing testimony was taken by me, in the cause, at

3 the time and place, as stated in the caption hereto,

4 at Page 1 hereof; that before giving testimony said

5 witnesses were duly sworn to testify the truth, the

6 whole truth and nothing but the truth; that the

7 foregoing typewritten transcription, consisting of

8 pages number 1 to 367, inclusive, is a true record

9 prepared by me and completed by Associated Reporters

10 Int'l., Inc. from materials provided by me.

11 ________________________________

12 Kyle Alexy, Reporter

13 _________________Date



16 rka/pdml










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