TRANSCRIPTION from Terri Reiser (6-13-01):
``NYS LYME DISEASE CONTROVERSY
"DIRECT LINE" MODERATED BY TERANCE MICHOS
Good evening and welcome once again to "Direct Line." I am your host, Terance Michos.
There is a battle going on in Dutchess County that has reached to the highest levels of government in Albany and will affect thousands of people right here in the Hudson Valley.
That battle is over how to treat Lyme Disease and it is getting intense, with rumors of conspiracy, malpractice, intimidation being thrown around.
Dutchess County is one of the counties in the nation being used as a test site for the Federally approved Lyme vaccine.
Dutchess and the Hudson Valley ranks in the top nationally in reported Lyme Disease cases, and Dutchess County is also the home of Dr. Richard Horowitz, who has treated Lyme Disease non-traditionally for thousands of people.
People swear his methods help cure them. Now the State Medical Board, with the encouragement of some area doctors, is working to suspend Dr. Horowitz's license which has caused his patients to mobilize.
Tonight will be your direct line into that saga as we talk to New York State Assemblyman Joel Miller (who is leading the fight to help Dr. Horowitz), Doctors Richard Horowitz and Kenneth Liegner who have been treating Lyme Disease non-traditionally, and patient Lia McCabe, who says she would have been crippled without non-conventional treatment. We will talk about that now.
Terance MICHOS: First, Lia thank you for coming.
Lia MCCABE: Thank you.
Terance MICHOS: I know it has been a long process for you and I know it is hard to always tell your story. You have spoken up in the State to legislators. Basically you look well. You look healthy, but you have had a long history and many doctors have said to you in the past that you did not really have Lyme Disease. How do you respond to those types of things?
Lia MCCABE: I respond by saying, they were wrong. Every cell in my body knows I have Lyme Disease and knows that the treatment that Dr. Liegner and Dr. Horowitz gave me worked. Both times. I was in a wheel chair for many years. You don't just pop up out of a wheelchair and be able to walk again.
Terance MICHOS: And Lia, before I get into it, I do want to say to our audience, that we called the New York State Department of Health and they didn't return our calls.
We called many doctors in the area that believe in the traditional treatment, they don't believe that there is chronic long term Lyme Disease and we didn't get anyone at this point to come on the show, so just so you know that we want to do the best we can showing both sides.
People don't realize though that your story is long. You have had Lyme Disease for..(how long?)
Lia MCCABE: Eight years.
Terance MICHOS: And you were in a wheelchair for six of those years, right?
Lia MCCABE: And in bed for two of them.
Terance MICHOS: And people never thought you would be taken care of. How did you get better. Tell us the story.
Lia MCCABE: Well, I was really one of the few very lucky ones that managed to escape the whole thing because I have an incredible family that could take me in and take care of me. I couldn't walk, I couldn't do anything. I was working for a portfolio manager in New York City doing all sorts of financial stuff, I forgot how to add. I didn't know how to add four plus three.
Terance MICHOS: What did the doctors day was the problem? Did they say is was psychosomatic?
Lia MCCABE: They said that. They said it could be MS, it could be Lupus, there was a variety of things.
Terance MICHOS: But you are sitting here now without MS
Lia MCCABE: Exactly!
Terance MICHOS: And they still don't want to give credence that it might, I am just saying might, have been Lyme Disease?
Lia MCCABE: That is why I am here tonight. (Laughter from Lia and Terance)
Terance MICHOS: OK, I got the point. Tell us how you went through the six years, to the two years bed ridden, to being relatively well, though you are still taking IV, right?
Lia MCCABE: Yes, I am still taking the treatment and I still do very aggressive physical therapy. Really learning how to walk again is just emotional, just the whole thinking process, it is very difficult.
Terance MICHOS: Really?
Lia MCCABE: But at least I have a chance because the medicine gave me that whole "connection to my feet again" to my legs again.
Terance MICHOS: You couldn't even connect your head to your feet?
Lia MCCABE: NO.
Terance MICHOS: This is not something here that, you know, (you would be here) to be an advocate for Dr. Horowitz or Dr. Liegner, but your story is that they helped you. How?
Lia MCCABE: They helped me because they took me in and they gave me a treatment that was beyond the standard protocol.
Terance MICHOS: And what was it?
Lia MCCABE: It was IV antibiotic treatment for Lyme Disease and they both treated me for an extended period of time.
Terance MICHOS: Long time?
Lia MCCABE: Long time.
Terance MICHOS: We are going to get into that, just so our audience knows, we are going to be talking to doctors later in the show. What is it they say it does, the Lyme Disease gets deep into the muscles and into the bones and it has to be long term to get to it?
Lia MCCABE: I get a little confused with the science of it.
Terance MICHOS: All I care is that you're better.
Lia MCCABE: (Laughter) All I know is that what they did worked, and if I was on 21 days (of antibiotic treatment) only, I would be in a wheelchair.
Terance MICHOS: Now your story is compelling, not just on this show, but you just did an interview with Nightline, correct? And they are going to be airing that sometime in the future about your whole story so this story is growing beyond just the Hudson Valley, and Lyme is very prevalent here. Do you feel you are going to get totally healed?
What do you feel about the fact that Dr. Horowitz's license could be revoked?
Lia MCCABE: I am infuriated. They should not be doing this. Obviously we don't have enough answers right now. Obviously, something worked on me and it needs to be available to other patients and if Dr. Horowitz loses his license he is not going to be able to help me or other patients.
Terance MICHOS: OK, you have gone Albany and talked to certain officials, one of them of course is Assemblyman Joel Miller, there are others. He is going to come on the show later.
Do you feel, I mean, have you heard anything from other patients that you know? Are they panicked, are they feeling upset that he is going to lose his license? Have they gone through traditional treatment?
Lia MCCABE: They are all horrified. We don't know where we are going to go. Most of us have already seen 20 to 30 doctors. We have already been told there is no hope, there is no cure. It is not Lyme Disease.
Terance MICHOS: They are saying it is too expensive, right?
Lia MCCABE: It is too expensive, and actually that was one of the reasons I did get as bad as I did because IV antibiotic therapy was recommended in the beginning, but my insurance company denied it.
Terance MICHOS: They did?
Lia MCCABE: They did.
Terance MICHOS: And what did it cost you? How much money was spent on you before you got well?
Lia MCCABE: Well this is the whole key. Over, probably close to $700,000 (seven hundred thousand dollars) was spent on hospitalizations, wheel chairs, all sort of...(interruption)
Terance MICHOS: When you were crippled?
Lia MCCABE: When I was crippled and in bed, and the treatment is far less than that, and when I was in one hospital in New Jersey, and they did not want me to go back to my apartment by myself, they wanted me to go into a nursing home. But fortunately I have an incredible family and they took me in. But what would have been the cost of a nursing home? I was 25-years- old.
Terance MICHOS: But see, the insurance company is not paying for that, that is State tax dollars that people pay, and you feel, and you are not trying to get political, but you feel basically that it is a little political.
Lia MCCABE: I think that there is a lot of politics going on in here and I don't think the politics make sense.
Terance MICHOS: OK. We are going to take a break, and we are going to follow the case, and we will certainly watch the Nightline show, and we just wanted to set the stage for one person that has been dealing with this.
We are going to take a break and when we get back, we are going to talk to Drs. Horowitz and Liegner and Assemblyman Joel Miller. We are going to tell you where it is at. The fight is going on right now. Stay with us.
Terance MICHOS: Welcome back to "Direct Line." I am your host Terance Michos.
We are talking about Lyme Disease. We are talking about the treatment of Lyme Disease, we are talking about the fight over Lyme Disease and how to treat it.
We have with us tonight Dr. Richard Horowitz and Dr. Kenneth Liegner, two doctors who both treat Lyme Disease non-traditionally and Dr. Horowitz, of course is in the process of the NY State Department of Health trying to revoke his license as a doctor and of course Assemblyman Joel Miller has gotten involved in this and so many of his constituents live in the Hudson Valley.
And we are just going to talk to our audience about where the process is at and our audience needs to know we called the Department of Health and we called other doctors that treat traditionally and could not get them on this show as of yet.
How did you get involved in this?
Joel MILLER: Well it could have been the three thousand letters that I got from different patients with Lyme Disease that prompted me.
Terance MICHOS: Three thousand patients?
Joel MILLER: We had letters that were coming in, we had e-mails, oh yes. Thousands of people contacted us. Now it is true that many of them were Dr. Horowitz's patients but it certainly brought this to a head, and it is a very important issue and let me --(pause) when you talk about non- traditional and traditional treatment, people get nervous.
We have certainly a split here, probably 95% of the medical community believes in the traditional treatment which is short-term antibiotic treatment.
And non-traditional isn't using apricot pits or ....(unintelligible) this is simply the use of long- term antibiotics, and done in a way that we are basically getting at the spirochetal infection.
Terance MICHOS: I am going to let the doctors talk about that. I want to just ask you what the Department of Health...(pause) what is going on.
Joel MILLER: Well you heard what Lia said, her treatment is very expensive. Now to compare that with the nursing home. Of course the nursing home is much more expensive.
We believe that the insurance companies and the other people in the community tied to the insurance companies or to laboratories, or to people that have a vested interest, have used the State Office of Medical Professional Conduct to get at the doctors who are doing these long- term treatments.
Terance MICHOS: Are you saying the word "conspiracy?"
Joel MILLER: I believe that the Office of Medical Professional Conduct is innocently being duped into doing this. They have a trip wire, they get a certain number of complaints, by law they must do an investigation.
And I think that they were unwitting allies in a conspiracy, and yes I believe the insurance companies do not want to pay the bill for this.
You have to understand that this is not a matter of other doctors will treat these people. As Lia pointed out, many doctors, either misdiagnosed or wouldn't treat at all and that is the key to this.
Terance MICHOS: Alright, I want to put up a quote from a Newsweek article as soon as we can get that up, to set the stage for our audience so they can see that this is going on far beyond this area. (Of New York)
Joel MILLER: That is right, it is a nation-wide problem.
Terance MICHOS: A nation-wide problem, that is why Nightline came on to talk to Lia, they know the story. As soon as that comes up I am going to look at that. Let me just ask you, this is up to the Pataki administration, isn't it?
Joel MILLER: We have had a number meetings now with the very top people in the Health Department. They handle the Office of Medical Professional Conduct.
It is now in the Health Department, as well as the Governors key people on health related issues, and clearly as we have had these meetings week after week.
And I have to give credit to Nettie Mayersohn who is the Assemblywoman from New York who is in fact was the leader in the battle for the Baby AIDS Bill and(unintelligible), she and I are working very closely together. She has been an incredible asset in this. A Democrat but a good friend of the Governor and a good person.
Terance MICHOS:. (laughter) What do you mean, " a Democrat but ..." (pause)
Joel MILLER: Well many Democrats don't want to admit that, but she does. The problem clearly is that without the doctors treating for chronic Lyme or post-Lyme syndrome, whatever you want to call it, the patients have no where else to turn. It is not as if there is a body of physicians out there who say "Sure we know what is wrong with you, we will treat you." They don't do that, so these patients are left without treatment.
Terance MICHOS: Alright, let's look at this quote, as soon as we get that up. This is about a Dr. Burrascano. Basically he is being, just like Dr. Horowitz, who we are going to talk to, getting his medical license revoked because he has been treating the way you are saying it.
This is the Newsweek article. One side which includes academics and insurance companies, says Lyme can be cured with just four weeks of antibiotics. Much more than that is unwarranted...hard on gallbladders and costly besides.
The other side, mostly doctors and their patients say that in rare, intractable cases, the infection will require or prolonged courses of antibiotics costing up to about $20,000.
Both sides have won huge research grants, and have published their studies in medical journals.
Burrascano is convinced that his prosecution is entirely political, about differences in opinion about treatment. As a published Lyme expert who has testified before Congress, Burrascano says he has treated some 7,000 people from 42 states and 11 countries. He says "I am no country doc. It is not like I am doing hocus-pocus." And that's the Newsweek article, November 13, 2000.
Dr. Richard Horowitz, Dr. Kenneth Liegner. (Introduction) Let me talk to you, Dr. Horowitz:, first. Has been this your experience, the same as his (Dr. Burrascano's) pretty much?
Dr. HOROWITZ: Yes, Dr. Burrascano and I have been undergoing the same problems, at this point in time. And it is a scary situation for the United States, because we have a spreading epidemic. Our children are playing on the lawns, they are getting tick bites. The tests are unreliable.
Terance MICHOS: The other night, just to let you know, my kid was playing on the lawn, and we were giving him a bath, and we pulled a tick off of him, and we just look... and we think.... blonde hair, he is as fair as can be and so we were able to see it. But go ahead.
Dr. HOROWITZ: So you can get a tick bite on a child playing on the lawn, the organisms cannot always be detected by blood tests, they get up into the brain.
Their memory doesn't work, they get tired, they get achy. And then they go to the doctor's and they tell them they have Fibromyalgia or Chronic Fatigue, and we are taking about an epidemic across the United States of people becoming disabled, as Lia was.
Where what I have been discovering, is it is not all Lyme, it is also other bugs in the ticks. And we really need the CDC and the government to take these ticks, examine them and tell us what is in these ticks that is making these people sick.
Terance MICHOS: Do you feel, and if you don't want to answer it, someone (please answer it) do you feel that there are doctors in this area of Dutchess County that are out to get you?
Dr. HOROWITZ: I think that would be very difficult (to say.) Let's simply say that there are doctors that do not agree with my treatment. I am aware of differences of opinion. I really could not say if there are people that out to get me.
Terance MICHOS: Dr. Liegner, I have read some of your research. You have been doing this for a long, long time. One of the things that I found interesting is you related this a lot to syphilis .
Dr. LIEGNER: Yes.
Terance MICHOS: And you said, you know back in the turn of the century, everyone was saying syphilis, that it was not a long-term (infection) and it couldn't affect all these things, and they were mocking doctors that were trying to treat it long term. Can you pick up on that?
Dr. LIEGNER: Yes, around the turn of the century there was tremendous controversy about the nature of syphilis , how it ought to be treated, how long it should be treated in definitions of cure.
I want to point out that it took medical science about 400 or 500 years to fully understand that syphilis is a chronic infection , that is multi-system, that can evolve over time.
We are just 25 years into the Lyme Disease epidemic, and both illnesses are spirochetal infections.
Terance MICHOS: What do you mean by that when you say that?
Dr. LIEGNER: Spirochetes are a particular, quite complex kind of infectious bacterium are known to have long-term consequences and there is a great deal of evidence both for syphilis as well as Lyme Disease that despite application of antibiotic therapy that these organisms can persist in human hosts.
Terance MICHOS: Do you believe that there are a lot of people out there that have Fibromyalgia or have that diagnosis that really have Lyme.
Dr. LIEGNER: I think that is probably true.
Terance MICHOS: You do, and you too Dr. Horowitz?
Dr. HOROWITZ: Yes. I think it would be interesting for someone to do a retrospective study for the last ten years in Dutchess County ....(interruption)
Terance MICHOS: Why is it that people don't want... has the other side been able to qualify all their research? I mean, have the traditional (believers in) four weeks of antibiotics (for treatment), have they been able to prove that what they are saying is correct?
Dr. HOROWITZ: Actually, there is wide agreement that a fraction of patients who get traditional four weeks of antibiotic therapy are not cured. I mean pretty much everybody agrees on that, that there is a fraction of patients who remain ill despite application of standard therapy.
So then, what is the outcome for these patients? What are we supposed to do with these patients?
Terance MICHOS: They are just left out there?
Dr. HOROWITZ: The conventional wisdom is that you don't do anything. You have got no treatment.
Terance MICHOS: Alright, (turning to Joel Miller) I know you'll tell me, why is it that the doctors, the doctors who are probably in your area, why are they fighting so hard?
Joel MILLER: Well, if we think back 50 years ago, when the community standard for the treatment of a premature baby was to place them in an oxygen rich incubator environment, now the doctors who did that did not do the original research.
The standard for malpractice was to practice the community standards, so by listening to what some of the experts said, they all did this. They placed the babies in the oxygen rich environment.
Many of these babies, as you know, lost their eyesight. And they went back, when they reached their majority, when the patient reached their majority, went and sued those physicians, basically for the type of treatment that caused this problem.
Overwhelmingly, the physicians don't do the research so they follow certain guides that come out of government institutions, whether it is the Departments of Health in Washington or New York, or what have you. It is safer to do that.
But in this case there is no way to answer this question, what happens when you treat the patient and sometime after that they demonstrate all of these symptoms? You can't possibly say they are well, and yet these doctors say they are well.
Terance MICHOS: Yet you believe the insurance companies are basically fighting this.
Joel MILLER: We know they are fighting it.
Terance MICHOS: But it is easy for them to say because in one way they can say, look nobody has proven anything. We are not going to give out all of this money.
Joel MILLER: Clearly, now, gentlemen (turning to Drs. Horowitz and Liegner) how many patients do you treat?
Dr. HOROWITZ: I have over 3,000 Lyme patients at this point in my practice and every week they are coming in from Maryland, from Pennsylvania, they are coming in (interruption)
Terance MICHOS: And every time we air a show about it, people call like crazy, right?
Joel MILLER: And they come in. Because why? They have been abandoned by the rest of the medical community, which tells them they don't have Lyme Disease.
Terance MICHOS: But wait, aren't there other doctors too that want to treat but they are afraid because they are going to get their licenses taken away too?
Joel MILLER: Well, right now they are, but what is important to know is that medicine is still an art, and with this particular disease entity there is no test that is specific and accurate enough to tell you whether you have this disease or you don't.
Terance MICHOS: But there are some very fine doctors who disagree with this? Why is this? They are good people, they don't ....(pause)
Joel MILLER: We have one who works at Stoneybrook who is tied to one of the laboratories, who has been the State's key witness against the physicians who in fact treat chronic Lyme.
Terance MICHOS: Who get paid by the insurance companies?
Joel MILLER: We believe there is a conflict of interest. We believe the entire thing has been slanted. What the State will say is that this is not about Lyme. That is their excuse.
Terance MICHOS: And they say that Lia McCabe got healed not by antibiotic (Lyme treatment)
Joel MILLER: Their attacks on the physicians who treat chronic Lyme has nothing to do with Lyme. They say someone complained, and then what do they do? They go into that physician's office, they pull charts.
The law allows them to take any medical record they want, with or without the patient's consent. And they look through these records trying to find anything that wasn't perfect medicine or could be interpreted that way, and they come back after the doctors saying, not that you treated Lyme, this isn't about Lyme, it is about record keeping. It is about something else like that and it really is a sick play on their power.
Terance MICHOS: Okay, we are going to take a break, and when we get back we are going to talk more with Dr. Liegner and Dr. Horowitz. Where are they at right now and where they stand up on the State Capitol with this whole issue.
Terance MICHOS: Welcome back to "Direct Line." We are talking about Lyme Disease and its treatment and the battle that is going on. Dr. Horowitz, where are you emotionally right now? Do you feel like you are about to lose your license? Are you beaten down?
Dr. HOROWITZ: I am not beaten down. It has really been an honor for me to stand up for the community and to help people. I have a good feeling inside of myself knowing that I have helped thousands of people.
Terance MICHOS: Even if you get your license taken away?
Dr. HOROWITZ: I am sad about the system, and I am sad about what is happening. But I can only feel good about having helped many people.
Terance MICHOS: Many doctors are going to be looking at me now and saying "Why are you doing a show like that?" We asked the other people to come on this day. We are going to make you out to a martyr, you know, but they didn't come on the show.
There is an experiment years ago with the African Americans, you have said that experiment certainly was not halted by anbody that was a physician, it was halted by people with moral character. What did you mean by that, Dr. Liegner?
Dr. LIEGNER: Well, I had given some information about it. The Tuskeegee Experiment was not stopped by the medical profession, it was not stopped by the public health community, it was stopped with persons of conscience, who said that this is wrong.
And just as it was wrong to allow, when treatment was available, to allow people with evidence of an active spirochetal infection to go untreated, we have the same situation occurring with patients with chronic Lyme Disease who continue to harbor persistent spirochetal infections and they are not being treated.
Terance MICHOS: Are you going to take this fight all the way up?
Where is the Governors' Office, where are they at? (in terms of this issue)
Joel MILLER: So far the Governor's Office has been very supportive. And I think that this is all part of.... (Interruption)
Terance MICHOS: Is the Department of Health worried about that? They haven't returned my calls.
Joel MILLER: I think they are getting a little nervous because of each of the "quote/unquote" answers that they throw up to defend themselves have holes in them so that they are not holding water anymore.
And the reality is that we have to stop the complacency which allows management of money to supersede management of health and disease.
Terance MICHOS: And the reason, the same reason you got into this as a doctor, you are a dentist, but you are a doctor, is that you felt that the non-traditional treatment was being misunderstood. You were saying that it is scientific, it is not just this kind of strange treatment... (interruption)
Joel MILLER: Well, that is right. When we say non-traditional it is simply an extension of the traditional treatment and that is more of the same rather than doing something totally strange.
Terance MICHOS: Give this to me in layman's terms, doctor.
Dr. HOROWITZ: Well, for example, we sent out ticks from Dutchess County in Millbrook and we found out that they contained Babesia, another tick borne organism.
And I have treated now hundreds and hundreds of patients in the Hudson Valley for Babesiosis. It was not known to exist here. These people have gotten significantly better. Now Babesia can be in the blood supply. So this organism, theoretically, in the Hudson Valley, people don't know about.
Terance MICHOS: Why don't good doctors that disagree with you, why don't they want to help people? Why are they not getting that?
Dr. HOROWITZ: The problem is that their surveillance criteria for these organisms, and if you don't see it under the microscope, they are saying it doesn't exist. I have used DNA technology to prove it.
Terance MICHOS: Dr. Liegner, same situation with you?
Dr. LIEGNER: In what sense?
Terance MICHOS: In terms of this kind of discrepancy? They don't trust how you are doing your treatment? Are they coming after you next?
Dr. LIEGNER: Not as far as I know.
Joel MILLER: That has made Dr. Liegner a strong ally because he steps forward on the basis of science and good medicine. His curriculum vitae is as long as this room, so these are not physicians who are slouches in the profession of medicine.
These are not quacks. These are true academicians and medical people, and clearly what is being lost in this entire argument is that medicine is still an art and it is the diagnosis that and that depends on the ability to diagnose, not just depending on a test, and that is what these people are doing and they are being challenged for it.
Terance MICHOS: And in 10 seconds, if you can give it to me, and you said not yet, but this thing goes on it could come to you, correct?
Dr. LIEGNER: Well, I think what is happening is having a very chilling effect, and it is making it very difficult for people who have Lyme Disease, and other tick borne diseases to get treatment.
Terance MICHOS: The patients are starting to panic as they have no place to go.
Dr. LIEGNER: I think the message is not being lost on physicians that physicians who treat Lyme Disease are being targeted.
Terance MICHOS: In 2 seconds, as we have to go, do you still have your license? (Dr. Horowitz)
Dr. HOROWITZ: I do at this point, but something could happen in the next several weeks.
Terance MICHOS: Are you going to fight this to the end?
Joel MILLER: Absolutely. And don't forget, in the national news, 150 physicians who treat Lyme Disease are all being targeted in all states, so it is obviously a major problem.
Terance MICHOS: Thank you all for joining us. There is a lot more to this, I am Terance Michos from "Direct Line." Goodnight. ''