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(Section Removed.)

25 MR. GOTTFRIED: Okay. No other



1 questions?

2 Okay. Thank you very much.

3 Okay. The next witness is Jill

4 Auerbach.




8 is Jill Auerbach. Before I get into my speech, I've

9 been asked to make a few corrections. And one is

10 that this was 23,000, not 2,300 signatures. And the

11 other is that Alan Muney from Oxford brought up the

12 CDC guidelines. Well, according to a letter that Pat

13 Smith has, the CDC does not have guidelines on Lyme

14 disease. So, if you're interested in that, Pat has

15 the letter.

16 Additionally, I'd like to make a few

17 things -- that I think that are of interest. In

18 Dutchess County, where Assemblyman Miller and I live,

19 this is the monthly morbidity report. More cases of

20 Lyme disease than there were strep throat. And when

21 we talked about the CDC criteria being underreported

22 by -- that it's tenfold more than what is reported,

23 that is the CDC criteria that is underreported.

24 There are also those patients that do not meet the

25 CDC criteria. And New York State, there was an



1 article in our local paper that questioned the amount

2 of money that was being spent on Lyme disease versus

3 West Nile virus, since West Nile got $31 million last

4 year and again this year. And the Department of

5 Health spokesman said that $241 per person that has

6 Lyme disease in New York State is what was spent.

7 Now, if you divide that by ten, that makes it $24.

8 And now if you divide that again by the number of

9 people that really have Lyme disease, I ask you, how

10 much money are we spending on Lyme disease? And the

11 fact that the Tick-Borne Institute gets $150,000 a

12 year is a travesty, in my opinion.

13 One other quick comment that I'd like

14 to make is in relationship to the NIH study about the

15 doxycycline, the 200 milligrams. First of all, most

16 people don't know the tick that bit them, that causes

17 the infection. When people find the tick, it's

18 usually found earlier in the infection and it's

19 removed, and in -- often cases that prevents them

20 from developing Lyme. But the other thing that's

21 really important is the fact that those people were

22 only followed for six weeks. And when I was at a CDC

23 conference with Dr. Fish, I questioned him about

24 that, "Is that right? That's all you followed them,

25 was for six weeks?" He said, "Yes." I said, "Well,



1 how did you know that you just didn't lower the

2 bacterial load? Did you call them after three months

3 or six months or a year?" He said, "No." I said,

4 "Well, don't you think that would be interesting to

5 find out how their health was after that period of

6 time?"

7 I think the other issue on that study

8 was that all that data that was completed in December

9 of 1996, yet it was so important that it had to be

10 published a month early in the New_England_Journal_of

___ _______ _______ __

11 Medicine. I asked him why didn't it -- why wasn't it


12 published four years earlier, when that data was

13 available, if it was so vital to Lyme disease

14 treatment? So, he didn't really have an answer for

15 that, but I thought it was very interesting.

16 Sorry to take up so much time with

17 that, but I'll get on to my speech.

18 I am a member of the Dutchess County

19 Legislative Task Force to study deer tick control,

20 coordinator of a community advisory board as part of

21 a CDC community grant on Lyme disease reduction in

22 the county, and also coordinator of the Hudson Valley

23 Committee for Lyme Disease Patient Advocacy. We

24 promote the need for tick reduction, research,

25 education and patient support. And I hope what I'm



1 about to tell you is going to leave your skin

2 crawling.

3 These blood-sucking arthropods are our

4 enemies. They have three blood meals. The first one

5 is usually on a rodent or some other small animal.

6 The mouse has been responsible for diseases such as

7 the Hantaan virus, and the rat for bubonic plague.

8 So, consider what we could be infected with when this

9 tick has its second or third blood meal on us. We

10 already know that ticks carry Lyme, babesiosis,

11 ehrlichiosis, Rocky Mountain spotted fever, viral

12 encephalitis, and I could go on and on to name the

13 other very serious diseases that they carry. And

14 some of them are still being discovered, just as the

15 new one that was discovered at Yale this year. And

16 the interesting thing about that is that organism is

17 found to be carried in the salivary gland, so it

18 really takes no time at all for that to transmit as

19 compared with Lyme.

20 This is a deer with adult female ticks

21 on its ears. Each tick will lay over 3,000 eggs

22 apiece when it finishes its meal and falls off to the

23 ground. As part of the CDC reduction project, I

24 assisted with measuring the number of ticks before we

25 began. Dragging a three-foot by three-foot piece of



1 white corduroy across the ground for a distance of

2 about 65 feet, between 500 and 800 larval ticks were

3 recovered in a number of the swipes. They were so

4 tiny that, to be certain they were ticks rather than

5 a speck of dirt, I had to move them with a tweezer to

6 make sure that they would move. Afterwards, I used

7 all precautions to prevent a tick attachment. And in

8 spite that, I found a tick here and one right here.

9 In a separate incident, a three-year-old child in our

10 county had 23 nymphal ticks removed from her body

11 during a bath the night after she visited one of our

12 local parks.

13 This published study by the Institute

14 of Ecosystem Studies in Dutchess County of 188 deer

15 tick, 66 percent were infected with the Lyme disease

16 organism, 42 percent with ehrlichiosis and 28 percent

17 with both. More recent measurements by the Institute

18 have found some higher Lyme disease rates and have

19 confirmed babesiosis in the ticks. And Dr. Osveld

20 (phonetic spelling) gave me permission to use that

21 here today. Because we had been working for several

22 years trying to get a definition of whether the ticks

23 carry babesiosis, because it was denied that it was

24 inland.

25 The inland existence of babesiosis had



1 been denied until about two months ago. However,

2 Drs. Anderson and Magnerelli reported it in West

3 Hartford, Connecticut in 1991, in the Journal_of_

_______ __

4 Clinical_Microbiology, finding, like I said, inland

________ ____________

5 in West Hartford, Connecticut, contracted in North

6 Westchester, and this year in Dutchess County. The

7 Department of Health sent a health bulletin

8 confirming babesiosis in patients that originated in

9 Dutchess County.

10 We need studies of the effects of

11 multiple tick-borne organisms in patients. What

12 happens when they suppress the immune system? Are

13 they responsible for chronic symptoms and persistent

14 infections? How should they be treated? These

15 doctors are seeing real, live patients that represent

16 that spectrum, not those in the very narrowly-defined

17 NIH Lyme disease study which in June reported that 90

18 days of - excuse me - so-called long-term antibiotics

19 failed to improve patients with chronic Lyme. No one

20 in that study was treated for co-infection.

21 I have several documents here you saw

22 before about Dr. Straubinger's research. His

23 research at Cornell with dogs demonstrated that four

24 weeks of the so-called standard antibiotic treatment

25 protocol failed to eradicate the Lyme disease



1 spirochete; they were still present in dog tissues.

2 Dr. Straubinger specifically spent a letter to me via

3 e-mail to be used for this hearing reiterating some

4 of this information that he has. And I hope you'll

5 take the time to read it. It's very interesting, but

6 I don't want to take the time right now. But please

7 do take that time.

8 Given his research, although I'm not a

9 doctor and not a scientist, I personally believe that

10 the two- to four-week so-called standard protocol

11 allows survival of the Lyme organism in many

12 patients. Could this lead to chronic Lyme disease

13 or, worse yet, could it actually cause

14 antibiotic-resistant organisms in those patients?

15 Dr. Dennis Parenti (phonetic spelling), Lymerix's

16 lead investigator for SmithKline-Beecham, addressed

17 clinicians in this video at a 1998 satellite medical

18 conference about the lack of reliability of testing

19 with patients who had ECM rashes, et cetera. Fully

20 one-third with the ECM rash are seronegative, he

21 found, and only two-thirds -- you'll see.

22 (The videotape was played.)

23 "SmithKline's blind vaccine trial was a

24 multi-center, randomized, double-blind placebo

25 control trial that involved almost 11,000 subjects.



1 Subjects are randomized one to one, that is, that

2 half of the subjects received the placebo and half

3 received the vaccine. It was conducted in 31 sites

4 in endemic areas in the U.S., mainly along the

5 Northeastern corridor, but also included sites in the

6 Midwest. It was conducted from January of 1995 until

7 November of --.

8 "Let me talk a little bit about classic

9 erythema migrans. Erythema migrans has been reported

10 to be the initial sign of Lyme disease in 50 to 80

11 percent of cases. However, recently in the past

12 couple years there have been a couple of publications

13 from endemic centers that have suggested that, in

14 fact, erythema migrans is now the presenting symptom

15 in over 90 percent of the cases; and that as doctors

16 and patients become more aware of what the rash looks

17 like, that this is more common for them to pick up.

18 However, I should mention that in our study erythema

19 migrans accounted for only 60 to 70 percent of the

20 cases of Lyme disease. So, clearly only about

21 two-third's of cases presented as EM.

22 "In conclusion, I'd like to emphasize

23 three take-home points:

24 "Number one, if you're performing

25 academic studies and you plan to diagnose Lyme



1 disease based on serologic testing, clearly one-third

2 of the cases will be missed, and that skin biopsies

3 and skin cultures are really necessary;

4 "Number two, serologic testing in the

5 setting of erythema migrans is frequently negative,

6 and in clinical practice I'm sure it's even lower

7 than what we experienced in our study. So that

8 negative serologic testing, negative blood testing in

9 erythema migrans should not deter you from making a

10 diagnosis. Erythema migrans remains a clinical

11 diagnosis;

12 "Number three, although the classic

13 bull's-eye rash is thought to be the main presenting

14 sign of erythema migrans, in fact, the bull's-eye may

15 not be the most common morphologic appearance. Other

16 appearances, such as vesicles, linear lesions and

17 petechial lesions have also been well-documented.

18 "Thank you very much."

19 (The videotape was stopped.)

20 MS. AUERBACH: So, you can see that

21 only two-thirds of those with Lyme disease presented

22 with any rash at all, and many of them were not the

23 classic bull's-eye, which is why it is often so very

24 difficult for physicians to diagnose this disease.

25 It would be nice if everybody got the class



1 bull's-eye. I, for one, did not.

2 Dr. Krause (phonetic spelling) of

3 University of Connecticut School of Medicine reported

4 on the increased severity and duration of illness

5 caused by a co-infection of Lyme disease and Babesia.

6 Concern was expressed that these chronic infections

7 may threaten the blood supply. My doctor had been

8 dropped by insurance companies as a participating

9 physician, he had been investigated by the OPMC, and

10 he had been ridiculed by his peers for his treatment

11 of Lyme and babesiosis. And might I add that, time

12 after time, I speak to his patients and when they

13 were treated for babesiosis there was a dramatic

14 turnaround, as you heard with Sarah Rude and you will

15 be hearing from another of his patients.

16 Now, several years after he began

17 reporting it, the New York State Department of Health

18 finally agrees that babesiosis occurs inland. Almost

19 all of the documents I referred to come from a binder

20 identical to this one, which I gave to Commissioner

21 Novello's representatives for her, in a meeting in

22 September of 2000. So, this information was in the

23 possession of the Department of Health before many of

24 these physicians were even investigated by the OPMC.

25 In this climate, physicians fear investigation and



1 that their insurance companies will drop them as

2 providers. This causes doctors to limit or close

3 their practice to Lyme patients, to rely solely on

4 tests for diagnosis, and to treat by a one-fits-all

5 cookbook approach rather than on an individual basis.

6 This results in an increase in chronic illness,

7 misdiagnosis, suffering, increased costs to society,

8 and threatens our blood supply. And, by the way,

9 this isn't going to be away by our sticking our heads

10 in the sand, it's going to get worse. I hope this

11 demonstrates to you what tying the hands of our

12 doctors means. These are the brave physicians who

13 have given me and so many others our lives back

14 again. Money spent on tick reduction to drastically

15 reduce the source of all of these diseases.

16 And before I conclude, I was asked to

17 present -- submit data compiled by one of our patient

18 advocacy groups Action Lyme. Members asked me to

19 cite the following quote from Eugene Shapiro, a

20 witness who was supposed to be here today -- or speak

21 today. Quote, "Some people would have you believe

22 that there are two different diseases: Somehow, for

23 one form of the disease, antibiotics are effective;

24 but then there's some other form of the disease in

25 which you don't have objective findings of



1 inflammation, which is the way bacteria cause

2 disease."

3 Action Lyme's data PAC focuses on this

4 issue, with significant evidence for just what Dr.

5 Shapiro doubts: Two types of Lyme disease. The

6 first form of Lyme disease is infectious arthritis in

7 the joint, according to documentation; and the second

8 is infection in the brain. This documentation

9 includes also a background on the phylum of the

10 spirochetes itself.

11 Thank you very much.

12 MS. O'CONNELL: Thank you very much,

13 Jill. I have a question that's sort of related to

14 some of the things you were talking about just now.

15 The tick reduction aspect of this -- for me, that's

16 something very interesting, and I think as

17 policymakers that might be an area where we may have

18 an impact on the incidence of this disease. You

19 know, as a nurse, years and years ago when we used to

20 spray with what we consider now all kinds of horrible

21 chemicals that we've now phased out, we never saw

22 Rocky Mountain spotted fever. Now we're seeing it

23 again. While we need to eliminate some of these

24 pesticides and harmful chemicals in the environment,

25 is any recommendation you can make or anything you



1 know about? Having learned of your experience in

2 dealing with this horrible disease and the issue of

3 tick reduction, are there any comments you can make

4 to us that might be relevant, that we might consider

5 or research in our roles as legislators, that might

6 address that? Right from, you know, soup to nuts,

7 whatever you can mention to us that we might

8 consider.

9 MS. AUERBACH: Well, about a year ago,

10 a little more than a year ago, I presented this to

11 our legislature in Dutchess County, and they asked me

12 kind of the same question. And I suggested that they

13 fund studies at our local institute, the Institute of

14 Ecosystem Studies, to study deer tick reduction and

15 methodologies. I suggested that we bring in the

16 researchers from all over the country that have been

17 doing work on different methodologies of tick

18 reduction -- and there's some fantastically that's

19 been going on, but there is no funding for it. So,

20 therefore, it falls by the wayside. And we did do

21 that in May. We brought all of these researchers

22 together and they tossed around a lot of ideas. And

23 there is some, as I said, fascinating research,

24 things like pheromones. There are desiccants that

25 kill the ticks; there are nematodes; there are fungus



1 that kill the ticks. In fact, there is actually a

2 fungus product on the market that they were supposed

3 to be going back and asking the company to go after

4 the EPA for licensing, so that they could use it for

5 tick control. There's deer feeder stations. There

6 are bait boxes that are very, very exciting. That's

7 supposed to be commercially available. I would love

8 to talk to you at some time; it will take up too much

9 time right now.

10 But the county also formed the Task

11 Force on Tick Control; and then, in the meantime, the

12 CDC has funded a grant in Dutchess County to reduce

13 Lyme disease. And there are two pieces to that; one

14 is education and the other one is intervention

15 methodology. And what we're doing -- the

16 intervention methodology is going to be with the deer

17 feeder stations. And I do pray that we will have,

18 from somewhere, enough money, because the CDC project

19 did not give us enough money to use these bait boxes

20 for rodents when they're available. Because it's the

21 rodents that are the biggest reservoirs for the

22 disease. They're the ones that actually spread it.

23 The deer are responsible in that the adult female --

24 that's the preferred host. She goes on, she has her

25 blood meal, and then she's able to lay her 3,000 or



1 more eggs. So, those are the two animals that are

2 probably the most implicated in it. And there has

3 been really virtually no funding spent on this field

4 of research, and it's really very promising. And

5 that's what we need --

6 MS. O'CONNELL: And interesting --

7 MS. AUERBACH: -- in my opinion.

8 MS. O'CONNELL: -- just as a short

9 follow-up -- thank you for that response. And we

10 will meet and talk about some of these ideas that are

11 out there. But we've spent quite a bit of money and

12 gone to great lengths, perhaps taking risks we may

13 not have needed to take with control of West Nile,

14 including aerial spraying, and yet we have not been

15 as aggressive in terms of, you know, addressing the

16 tick population and the control of this -- you know,

17 this disease. So, I think it's something that we may

18 want to look at, and perhaps we could work with --.

19 MS. AUERBACH: And, truthfully,

20 spraying for ticks versus spraying for mosquitoes --

21 mosquitoes, it's aerial spraying.

22 MS. O'CONNELL: Right.

23 MS. AUERBACH: Ticks are close to the

24 ground, so you're doing a ground-level spraying. And

25 there are acaricides that are targeted towards ticks



1 and that have a very low danger -- there are, I

2 think, three different levels of warnings. And

3 there's one that's very, very effective, that has a

4 very low level of danger. And if you just -- for

5 instance, in Dutchess, we're looking doing -- using

6 this just in recreational areas, where the children

7 go out to play baseball or soccer or whatever and

8 there's a lot of brushy area around -- spraying these

9 areas so that when the families come with their young

10 children, they're not going out and playing in this

11 brushy area while their siblings are playing baseball

12 or such and picking up ticks and getting sick.

13 MS. O'CONNELL: Thank you very much.

14 MS. AUERBACH: Thank you.