Posted by Librarian on 4/2/2002, 1:20 pm

Doctor Interview Transcript Interviewer: Hello and welcome to this broadcast this evening with our doctor who is looking into this condition and investigating it. He is the lead investigator. I can't release his name. That's a request by the doctor that's working on this. So, we will just go right ahead and go right into the interview. Good Evening, Doctor. Doctor: Good Evening I: Thank you so much for being with us and thank you so much for your interest. I guess the first question that we would have is what got you interested in this disorder? D: Well, I saw originally a couple who had had these symptoms for four years. And, they had gone to many different doctors and told me their experience with it. And, I've seen this several times in other areas where people have the conditions which may be hard to diagnose. And it was clear that they were experiencing something that was clearly different and needed to be looked into. And so, I started to work with them and over time we've begun to find some things that we think can be the potential reason for their suffering. I: Well, I think that you told me at one point that you had about several patients after that that had this as well. That they're not the only patients. D: So far I've seen or been in contact with approximately ten people so far. And so I would say of these ten people, nine of them I have personally seen. And the tenth person I've been working with from a distance. And so, all of these symptoms are pretty consistent. I: And of course, you've seen a couple people from our group as well. D: Yes. I: I guess the biggest question on everybody's mind, which I know you can't answer but I'm gonna ask it anyway. What is it? D: That's a good question. I think that it could be several things. But I think that the symptoms are pretty .First of all, I think that it is something real. Meaning that I think that as time goes on we're gonna be able to say very clearly what it is. And whether it's the same thing that everyone is experiencing or not. It's probably the same thing that many are experiencing. And I think we want to try to maintain an open stance and not miss the mark. I: Exactly. D: in the sense that we want make sure that we to take a broad based approach to it. And, my efforts have been to look at hand picking other scientists, researchers; people who are in various fields that bring different expertise to the table. So that we can make sure that we can clearly say what it isn't and clearly say what it is simultaneously. So with that roundabout statement, I think, you know, that the bottom line is that I think it is real and I feel that we are developing an approach to being able to say exactly what it is. I: Do you think that it is alive in the sense that we think of something being alive? D: Yes, I think it is alive. I think that the difficulty for the people that are listening is that it is hard to know is it on the skin, is it under the skin. Exactly where is it. And whatever it is it behaves parasitically, meaning that it lives on the host, which are humans, at least some part of its life cycle and seems to reside there. So, be it fungus or a nematode, or something else. I think that we need to keep a broadbased approach to it. The interesting thing is that there are more bacteria, more organisms that have not been identified than have been identified and so when we approach this, we need to stay open to not miss the mark. I: Exactly. D: So, that's basically what we've been doing. But it's very clear to me that this is a definite real condition. If you look at what we knew about Lyme's disease. We first discovered that Lyme's disease existed based on the pattern that we saw come forward and then five years later we identified the organism. I hope that we won't have that same lag time here, in fact I believe we won't. But, nevertheless, first people see patterns and then they can say exactly what it is. My hope is that we get people really interested in the pattern and then start looking in a broad way of ways being able to pin in it down. And, the things that we've been thinking about are very difficult to diagnose. Obviously because many people have gone to different doctors and some of them have definitely tried some things and have not yielded anything. So, that indicates that it is outside the standard approach to things. I: You had mentioned to me once that you thought the testing was flawed in regard to trying to identify some specimens, you had some ideas on that. D: This seems to really fall between the cracks. If you go to an entomologist who studies bugs, he has his space that he's in and he's very well versed in that. If you go to a dermatologist or infectious disease person, they seem to have their space. But this seems to fall between the cracks. If you do a biopsy on the skin, I suspect that what's happening in many cases, the staining techniques that we use, that this falls outside the visible light spectrum. Which means that we're just missing it. Our techniques are so routine that we don't think outside the normal space and are therefore not able to see what is in front of us. I: You had mentioned something to me about a biopsy that we're looking at under a dissecting microscope. Do you want to tell people about that, because I find that fascinating? D: I was looking at a biopsy specimen. And I was actually looking at the material that's in the surface of the skin. I thought something was imbedded in it. And then on my forceps, in the skin itself this sticky filamentous stuff came forward. It was clear. Actually later, when I was videoing in under a microscope, this stuff comes rising up out of the dermis of the skin and this time it was black. I suspected that the heat had actually caused it to uncoil and change color and I have that on video. It looks like basically filament. It did not look like anything that was alive. But since I know where it was located and saw it in those two phases, I suspect that it must be the thing that we are dealing with. We've also done some additional studies with different kinds of staining techniques and have found on biopsy on another person that something showed up. That same specimen was sent to Pathology and they did not see anything with the routine staining. So this confirms the fact that what is present needs to be looked at from a different angle in order to see it. I: You're saying that you think that what you found was a filament and it was not alive that uncoiled, is that what you're saying? D: I suspect what we're seeing is the causative agent, meaning the thing that's causing the problem. Where it was located, all of these samples that we've gotten so far have been in the skin, deep under the skin in what's called the dermis. Which it couldn't have gotten there unless it was residing there. And so I don't believe it was contamination. And so that leaves me to say that this is probably the thing that's been causing peoples' symptoms. I: Do you have any thoughts as to what that could be? That thing that you saw rise up out of the biopsy. D: I think that I do have some definite thoughts about what it is, but part of what we want to do is stay open and not want to corral it in too much. My belief is we should be able to have some answers, hopefully, in the next couple of months with that we're doing now. So I rather be able to do another broadcast with more information at that time. I believe that we need to be able to say definitely what it is. But I believe that it is the thing that is causing peoples' problems and I believe we should be able to see it in other people as well. I: Okay, all right. Is it contagious? Is this problem contagious? D: It seems, from the people I've talked with and the way that they have seemingly gotten it, it seems to be transmissible, yes. But the question is how much so? Many people have talked about getting it from their house, from areas in their house or from exposure to other people. I think that we just don't know exactly how it's being transmitted but it seems to follow a pattern of transmission. And, so, what is my concern is that, I don't want to have people locked up in their houses. They need to be able to live their lives and there may be some really good some precautions that they can take to make sure that that they lower the risk for other people's exposure. I think the pattern of exposure may be more home based. But, I think we still don't know right now, is it transmitted by a vector, meaning does something bite you and then transmit this to another person. Exactly how it gets from person to person is really still unknown. And this may take some time to figure that out. The first point would be, one, what is it and secondly what can we do about it to treat the people that have symptoms. And then over time we can get more information about how it seems to be transmitted. I: Okay, a lot of people are saying, "What are the threads. They see these black threads, white threads, whatever. Do you have any thoughts on that? D: I think the threads probably may be a real clue here. I would encourage people to make their own observations about it. And hopefully in the near future we'll have a way that people can send samples of threads and things of that nature and for it to be reviewed by someone that maybe specializes in things like nematology or fungal disorders and things of that nature. The beauty of having a group is that we can each take a different role and be able to work together in coming up with answers for those that are having problems.