A doctor in NYC who had 10 patients
2006-11-09 13:26:49A couple of years ago or so, I received a call from a doctor in NYC who had 10 patients, suffering from USPI. Over the course of many months, this wonderful doctor, working in close conjunction with NUSPA. was kind enough to put together a panel of researchers, to try and determine the exact nature of this illness. He totally believed us then and he believes us to this day.
Sadly his hospital superiors stopped his progress and threatened his career if he continued his research. Anyway, here is a transcript of the original interview between that doctor and myself.
***When we last spoke the doctor told me he was convinced this condition is microfilaria (nematodes) but again research was cut short and is still needed. NUSPA is still advocating unbaised research and working toward that end.
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. 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.
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.
I: Exactly. What aboutA… We were talking a little bit today and you were talking about carbon monoxide as an attractant for mosquitoes. Talk about that a little bit, about how things, about we can be an attractant for various things. Everyone is trying to figure out why this is on me and not on the guy next door. We were in the same location at the same time, and I got came back from wherever and I got sick and he didnA’t. Although, You do say it is somewhat contagious. Yet we do have many cases where it doesn't seem to be contagious at the present time.
D: I think this is a big mystery. It may be that some people one may have, one, zero symptoms, even though they've been exposed. Two, Other people may have a very strong immune system and they're able to resolve it, cancel it, eliminate it. And Three, there may just be a little bit of russian roulette in that that person was standing in the right spot and got exposed and the other one wasn't. I think we just don't know. There may be times where it may be more likely or easier to transmit. These are all multiple questions that it's gonna take some time probably to sort out. Hopefully as we build a team, that will be answered quicker.
I: You mention a team. You already have some people pretty much involved. Tell us a little bit aboutA…not necessarily who they are.
D: The reason for the secretism is that only that it's important to strengthen the team so that everyone feels comfortable with the observations that they're making so far. When you go too fast with that, it makes those people that have an interest get uncomfortable. What I've been doing is working slowly with different practitioners and microbiologists and people in various fields of medicine to identify people who show a real interest. With a team might be able to eventually see people who have this and have them go through a process to most precisely diagnose what is going on for them. So, at this point we have a couple of practitioners with real interest. We, as I mentioned, we've had some definite findings. I expect in the next month or so to have some more significant findings that we can start to share. So, I do see this moving forward and not getting hung up.
I: That was my next question. How long do you think it's gonna be until we have some answers for people. They're suffering so badly. So many people are using things that A…maybe taking a bath in bleach. That's an example. And of course, those things are clearly dangerous. Do you want to comment on that a little bit?
D: I think that the thing that speeds up the process are issues of funding. Once we get a sound base, we should probably get some pretty rapid interest from other foundations to fund epidemiology studies or different studies where we can look at the patterns that are coming forward and put the pieces of the puzzle together. And I'm hoping that that will come at a fairly rapid pace once we get a couple of key pieces put together. The difficulty is that a lot of the people who would be interested are only interested if they can stay in the space where their expertise is. And so if they're put on a panel, then I think they'll feel comfortable making statements about their area of expertise.
I: Do you think that this is possibly, that people get it from their environment. At one time when we did our first questionnaire. We thought that everyone had contact with water damaged wood. Now we're seeing in the new questionnaire. That in fact Most people did not have contact with water damaged wood, most people did not have Lice or scabies. And most people used a pesticide for the first time with regard to this. A lot of the early thoughts that many people were thinking and considering now look like that just may not be the case. Do you have any comments on environment? I mean, how did your people get it?
D: I would say that there is some concern about environmental exposure. In the same breath, I would say that people still have to lead their lives in a normal way. Clearly that 's probably is the greatest fear that people have is that can someone catch the same thing that I'm experiencing. And consequently, I answer this in a very cautious way because people have gotta keep their jobs, they've gotta lead their lives, they've functioning and keep it together, if you will, while we're coming forward with some answers with this
I: Can they get it from sitting in a chair or wearing a shirt that they had on the day before?
I: I think that it is reasonable to say if you've got a lot of chairs and stuff that are fabric, that you would look toward using things like steam heat to clean them or definitely be cautious about not wearing the same pair of clothes two days in a row if you're able to do that. Or if you can simply just steam iron them or steaming them in some way, should probably really reduce the likelihood of that staying in the fabric. I think this is the part that we don't know. Just doing reasonable precautions like thatA…
I: I wonder if anyone has thought of sending some fabrics out to be tested. Would that be helpful? Would you consider doing something like that?
D: That's a good question.
I: Everybody complains about their clothes and their furnishing and their car. And that's a real big problem.
D: I think that it's reasonable to take those kind of precautions. At some point it would be nice to have a place that people that who specialize in those types of areas could look at those types of materials. But, at this point, I don't know how long it's gonna take to get that aspect together. So I think that it makes good sense that people take the tips seriously and use them. And with that, from what I'm seeing, I think that people can continue their normal lives.
I: Okay, well, do you have anything that you want to add?
D: All I want to say is I think that one, that I believe that this is a bona fide condition. I believe that it deserves research. And, I would hope that we're able to move in a swift way so that we can put together a structure that can be followed by other practitioners. And for people not to become discouraged that they have not been heard or that here is no hope. I think that unfortunately, sometimes, when new things come forward in medicine, patients are labeled as crazy or something psychological is going on with them and this is a pattern. And, I think that with the volume of people who are having these issues and the histories being so consistent I think that it's real clear that there's something is going on.
I: Well, it's too bad that so many other doctors, most in fact, don't agree with you. And have overlooked this for such a long time.
D: I think part of it is, once we can develop a protocol, they can start to show them ways to look. Then their interest level will increase. And what's most important is developing a network of people who have an interest.
I: A lot of people have found more than one organism in their skin. Like I remember one lady who actually found a worm in her face, a lepidoptera or something like that. Other people have found bits and pieces of maybe an ant, or a beetle, or a tickA….which that could be there. Do you have any thoughts on that as to why?
D: All of these observations are valid. What I would encourage people to do is just if they have they have the opportunity is to it write down. I think by keeping reasonable records about your symptoms, when they occur, what makes them better, what makes them worse, what ii is that you feel and experience. This is very helpful. And so I would suggest if people keep a little diary or and write down what it is they're observing. And honor what it is that you experience as an individual. That information will be very helpful.
I: Doctor, people want to know what this is. Obviously at this point, you don't know, we don't know. But, I want you to assure people that you will be looking at everything whether it's fungal or filarial or whatever. Can you talk a little bit about that?
D: I think that we're doing is we're definitely developing a protocol we that we can be able to be clear that we're not missing anything. We're taking a very serious approach to this. And, we want to make sure that we're not too quick to come to conclusions and can start to look for a good screening test, for example. In addition, make sure that we don't miss anything that we maybe didn't consider. Because I think this is where you can back yourself into a corner and really miss the real cause of the problem. I would just say that I want people to remain hopeful and united and work together. Pay attention to what it is you're observing, experiencing. All of that is helpful. And will accelerate and speed up the rate of coming to some answers.
I: Let me make this clear for everyone who's listening, you absolutely believe this. Is that correct?
D: Oh yeah. Absolutely. There's no question about it. I think that we need to move past the questioning of ourselves. It happens so much that so many people split you, if you will, when you go in and ask for help that you start to question yourself, and that shouldn't be happening anymore. I think people need to just be clear, what they know is what they know. Just, collect your information, your observations. Integrate it into your life and continue to live your life while we're trying to get some answers here
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I: Exactly. What aboutA… We were talking a little bit today and you were talking about carbon monoxide as an attractant for mosquitoes. Talk about that a little bit, about how things, about we can be an attractant for various things. Everyone is trying to figure out why this is on me and not on the guy next door. We were in the same location at the same time, and I got came back from wherever and I got sick and he didnA’t. Although, You do say it is somewhat contagious. Yet we do have many cases where it doesn't seem to be contagious at the present time.
D: I think this is a big mystery. It may be that some people one may have, one, zero symptoms, even though they've been exposed. Two, Other people may have a very strong immune system and they're able to resolve it, cancel it, eliminate it. And Three, there may just be a little bit of russian roulette in that that person was standing in the right spot and got exposed and the other one wasn't. I think we just don't know. There may be times where it may be more likely or easier to transmit. These are all multiple questions that it's gonna take some time probably to sort out. Hopefully as we build a team, that will be answered quicker.
I: You mention a team. You already have some people pretty much involved. Tell us a little bit aboutA…not necessarily who they are.
D: The reason for the secretism is that only that it's important to strengthen the team so that everyone feels comfortable with the observations that they're making so far. When you go too fast with that, it makes those people that have an interest get uncomfortable. What I've been doing is working slowly with different practitioners and microbiologists and people in various fields of medicine to identify people who show a real interest. With a team might be able to eventually see people who have this and have them go through a process to most precisely diagnose what is going on for them. So, at this point we have a couple of practitioners with real interest. We, as I mentioned, we've had some definite findings. I expect in the next month or so to have some more significant findings that we can start to share. So, I do see this moving forward and not getting hung up.
I: That was my next question. How long do you think it's gonna be until we have some answers for people. They're suffering so badly. So many people are using things that A…maybe taking a bath in bleach. That's an example. And of course, those things are clearly dangerous. Do you want to comment on that a little bit?
D: I think that the thing that speeds up the process are issues of funding. Once we get a sound base, we should probably get some pretty rapid interest from other foundations to fund epidemiology studies or different studies where we can look at the patterns that are coming forward and put the pieces of the puzzle together. And I'm hoping that that will come at a fairly rapid pace once we get a couple of key pieces put together. The difficulty is that a lot of the people who would be interested are only interested if they can stay in the space where their expertise is. And so if they're put on a panel, then I think they'll feel comfortable making statements about their area of expertise.
I: Do you think that this is possibly, that people get it from their environment. At one time when we did our first questionnaire. We thought that everyone had contact with water damaged wood. Now we're seeing in the new questionnaire. That in fact Most people did not have contact with water damaged wood, most people did not have Lice or scabies. And most people used a pesticide for the first time with regard to this. A lot of the early thoughts that many people were thinking and considering now look like that just may not be the case. Do you have any comments on environment? I mean, how did your people get it?
D: I would say that there is some concern about environmental exposure. In the same breath, I would say that people still have to lead their lives in a normal way. Clearly that 's probably is the greatest fear that people have is that can someone catch the same thing that I'm experiencing. And consequently, I answer this in a very cautious way because people have gotta keep their jobs, they've gotta lead their lives, they've functioning and keep it together, if you will, while we're coming forward with some answers with this
I: Can they get it from sitting in a chair or wearing a shirt that they had on the day before?
I: I think that it is reasonable to say if you've got a lot of chairs and stuff that are fabric, that you would look toward using things like steam heat to clean them or definitely be cautious about not wearing the same pair of clothes two days in a row if you're able to do that. Or if you can simply just steam iron them or steaming them in some way, should probably really reduce the likelihood of that staying in the fabric. I think this is the part that we don't know. Just doing reasonable precautions like thatA…
I: I wonder if anyone has thought of sending some fabrics out to be tested. Would that be helpful? Would you consider doing something like that?
D: That's a good question.
I: Everybody complains about their clothes and their furnishing and their car. And that's a real big problem.
D: I think that it's reasonable to take those kind of precautions. At some point it would be nice to have a place that people that who specialize in those types of areas could look at those types of materials. But, at this point, I don't know how long it's gonna take to get that aspect together. So I think that it makes good sense that people take the tips seriously and use them. And with that, from what I'm seeing, I think that people can continue their normal lives.
I: Okay, well, do you have anything that you want to add?
D: All I want to say is I think that one, that I believe that this is a bona fide condition. I believe that it deserves research. And, I would hope that we're able to move in a swift way so that we can put together a structure that can be followed by other practitioners. And for people not to become discouraged that they have not been heard or that here is no hope. I think that unfortunately, sometimes, when new things come forward in medicine, patients are labeled as crazy or something psychological is going on with them and this is a pattern. And, I think that with the volume of people who are having these issues and the histories being so consistent I think that it's real clear that there's something is going on.
I: Well, it's too bad that so many other doctors, most in fact, don't agree with you. And have overlooked this for such a long time.
D: I think part of it is, once we can develop a protocol, they can start to show them ways to look. Then their interest level will increase. And what's most important is developing a network of people who have an interest.
I: A lot of people have found more than one organism in their skin. Like I remember one lady who actually found a worm in her face, a lepidoptera or something like that. Other people have found bits and pieces of maybe an ant, or a beetle, or a tickA….which that could be there. Do you have any thoughts on that as to why?
D: All of these observations are valid. What I would encourage people to do is just if they have they have the opportunity is to it write down. I think by keeping reasonable records about your symptoms, when they occur, what makes them better, what makes them worse, what ii is that you feel and experience. This is very helpful. And so I would suggest if people keep a little diary or and write down what it is they're observing. And honor what it is that you experience as an individual. That information will be very helpful.
I: Doctor, people want to know what this is. Obviously at this point, you don't know, we don't know. But, I want you to assure people that you will be looking at everything whether it's fungal or filarial or whatever. Can you talk a little bit about that?
D: I think that we're doing is we're definitely developing a protocol we that we can be able to be clear that we're not missing anything. We're taking a very serious approach to this. And, we want to make sure that we're not too quick to come to conclusions and can start to look for a good screening test, for example. In addition, make sure that we don't miss anything that we maybe didn't consider. Because I think this is where you can back yourself into a corner and really miss the real cause of the problem. I would just say that I want people to remain hopeful and united and work together. Pay attention to what it is you're observing, experiencing. All of that is helpful. And will accelerate and speed up the rate of coming to some answers.
I: Let me make this clear for everyone who's listening, you absolutely believe this. Is that correct?
D: Oh yeah. Absolutely. There's no question about it. I think that we need to move past the questioning of ourselves. It happens so much that so many people split you, if you will, when you go in and ask for help that you start to question yourself, and that shouldn't be happening anymore. I think people need to just be clear, what they know is what they know. Just, collect your information, your observations. Integrate it into your life and continue to live your life while we're trying to get some answers here.
I: A theory is just about what everybody has. And I guess, until you guys figure it out, I guess that's we'll all have to hold on to is our own personal theories.
D: That's where science begins. Everyone is making their observations. This is what's happening is everyone's making their own observations. These are so key. Medicine has never advanced unless the patient, if you will, makes an observation. That's where medicine grows. Because we listen and we're able to learn. What people are doing is they're really pioneering. Maybe they didn't volunteer for the job. But, nevertheless their job really is to document their experiences so that we can be able to rapidly come up with a diagnosis. And this is probably, if you think about a diagnosis that was accelerated because of the internet this has gotta be the one. Because Lyme's disease was before the internet. And here we're, this is an Internet driven diagnosis. Where the diagnosis is being accelerated because of the use the internet.
I: We have so many brilliant people in our group, who've come up all kinds theories and they do not sound half-baked. And only with your research and dedication through scientists will we find out what's really going on out there. Thank you very much.
D: YouA’re welcome. We also depend on their observations to make a full team. Everyone has a role. And what I'll say is that they don't have to feel like they have to go out steering on their own anymore. So that we can all come forward as a team. Everyone can comfortably be in their space and know that the mission is being achieved.
I: Very good, the mission is being achieved. I think we'll close on that. Thank you again. And to everybody who's listening, we need to stay united, stay tight and get there and we will do this. I honestly believe it. Thank you all. Goodnight.
D: Goodnight.
Sadly his hospital superiors stopped his progress and threatened his career if he continued his research. Anyway, here is a transcript of the original interview between that doctor and myself.
***When we last spoke the doctor told me he was convinced this condition is microfilaria (nematodes) but again research was cut short and is still needed. NUSPA is still advocating unbaised research and working toward that end.
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. 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.
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.
I: Exactly. What aboutA… We were talking a little bit today and you were talking about carbon monoxide as an attractant for mosquitoes. Talk about that a little bit, about how things, about we can be an attractant for various things. Everyone is trying to figure out why this is on me and not on the guy next door. We were in the same location at the same time, and I got came back from wherever and I got sick and he didnA’t. Although, You do say it is somewhat contagious. Yet we do have many cases where it doesn't seem to be contagious at the present time.
D: I think this is a big mystery. It may be that some people one may have, one, zero symptoms, even though they've been exposed. Two, Other people may have a very strong immune system and they're able to resolve it, cancel it, eliminate it. And Three, there may just be a little bit of russian roulette in that that person was standing in the right spot and got exposed and the other one wasn't. I think we just don't know. There may be times where it may be more likely or easier to transmit. These are all multiple questions that it's gonna take some time probably to sort out. Hopefully as we build a team, that will be answered quicker.
I: You mention a team. You already have some people pretty much involved. Tell us a little bit aboutA…not necessarily who they are.
D: The reason for the secretism is that only that it's important to strengthen the team so that everyone feels comfortable with the observations that they're making so far. When you go too fast with that, it makes those people that have an interest get uncomfortable. What I've been doing is working slowly with different practitioners and microbiologists and people in various fields of medicine to identify people who show a real interest. With a team might be able to eventually see people who have this and have them go through a process to most precisely diagnose what is going on for them. So, at this point we have a couple of practitioners with real interest. We, as I mentioned, we've had some definite findings. I expect in the next month or so to have some more significant findings that we can start to share. So, I do see this moving forward and not getting hung up.
I: That was my next question. How long do you think it's gonna be until we have some answers for people. They're suffering so badly. So many people are using things that A…maybe taking a bath in bleach. That's an example. And of course, those things are clearly dangerous. Do you want to comment on that a little bit?
D: I think that the thing that speeds up the process are issues of funding. Once we get a sound base, we should probably get some pretty rapid interest from other foundations to fund epidemiology studies or different studies where we can look at the patterns that are coming forward and put the pieces of the puzzle together. And I'm hoping that that will come at a fairly rapid pace once we get a couple of key pieces put together. The difficulty is that a lot of the people who would be interested are only interested if they can stay in the space where their expertise is. And so if they're put on a panel, then I think they'll feel comfortable making statements about their area of expertise.
I: Do you think that this is possibly, that people get it from their environment. At one time when we did our first questionnaire. We thought that everyone had contact with water damaged wood. Now we're seeing in the new questionnaire. That in fact Most people did not have contact with water damaged wood, most people did not have Lice or scabies. And most people used a pesticide for the first time with regard to this. A lot of the early thoughts that many people were thinking and considering now look like that just may not be the case. Do you have any comments on environment? I mean, how did your people get it?
D: I would say that there is some concern about environmental exposure. In the same breath, I would say that people still have to lead their lives in a normal way. Clearly that 's probably is the greatest fear that people have is that can someone catch the same thing that I'm experiencing. And consequently, I answer this in a very cautious way because people have gotta keep their jobs, they've gotta lead their lives, they've functioning and keep it together, if you will, while we're coming forward with some answers with this
I: Can they get it from sitting in a chair or wearing a shirt that they had on the day before?
I: I think that it is reasonable to say if you've got a lot of chairs and stuff that are fabric, that you would look toward using things like steam heat to clean them or definitely be cautious about not wearing the same pair of clothes two days in a row if you're able to do that. Or if you can simply just steam iron them or steaming them in some way, should probably really reduce the likelihood of that staying in the fabric. I think this is the part that we don't know. Just doing reasonable precautions like thatA…
I: I wonder if anyone has thought of sending some fabrics out to be tested. Would that be helpful? Would you consider doing something like that?
D: That's a good question.
I: Everybody complains about their clothes and their furnishing and their car. And that's a real big problem.
D: I think that it's reasonable to take those kind of precautions. At some point it would be nice to have a place that people that who specialize in those types of areas could look at those types of materials. But, at this point, I don't know how long it's gonna take to get that aspect together. So I think that it makes good sense that people take the tips seriously and use them. And with that, from what I'm seeing, I think that people can continue their normal lives.
I: Okay, well, do you have anything that you want to add?
D: All I want to say is I think that one, that I believe that this is a bona fide condition. I believe that it deserves research. And, I would hope that we're able to move in a swift way so that we can put together a structure that can be followed by other practitioners. And for people not to become discouraged that they have not been heard or that here is no hope. I think that unfortunately, sometimes, when new things come forward in medicine, patients are labeled as crazy or something psychological is going on with them and this is a pattern. And, I think that with the volume of people who are having these issues and the histories being so consistent I think that it's real clear that there's something is going on.
I: Well, it's too bad that so many other doctors, most in fact, don't agree with you. And have overlooked this for such a long time.
D: I think part of it is, once we can develop a protocol, they can start to show them ways to look. Then their interest level will increase. And what's most important is developing a network of people who have an interest.
I: A lot of people have found more than one organism in their skin. Like I remember one lady who actually found a worm in her face, a lepidoptera or something like that. Other people have found bits and pieces of maybe an ant, or a beetle, or a tickA….which that could be there. Do you have any thoughts on that as to why?
D: All of these observations are valid. What I would encourage people to do is just if they have they have the opportunity is to it write down. I think by keeping reasonable records about your symptoms, when they occur, what makes them better, what makes them worse, what ii is that you feel and experience. This is very helpful. And so I would suggest if people keep a little diary or and write down what it is they're observing. And honor what it is that you experience as an individual. That information will be very helpful.
I: Doctor, people want to know what this is. Obviously at this point, you don't know, we don't know. But, I want you to assure people that you will be looking at everything whether it's fungal or filarial or whatever. Can you talk a little bit about that?
D: I think that we're doing is we're definitely developing a protocol we that we can be able to be clear that we're not missing anything. We're taking a very serious approach to this. And, we want to make sure that we're not too quick to come to conclusions and can start to look for a good screening test, for example. In addition, make sure that we don't miss anything that we maybe didn't consider. Because I think this is where you can back yourself into a corner and really miss the real cause of the problem. I would just say that I want people to remain hopeful and united and work together. Pay attention to what it is you're observing, experiencing. All of that is helpful. And will accelerate and speed up the rate of coming to some answers.
I: Let me make this clear for everyone who's listening, you absolutely believe this. Is that correct?
D: Oh yeah. Absolutely. There's no question about it. I think that we need to move past the questioning of ourselves. It happens so much that so many people split you, if you will, when you go in and ask for help that you start to question yourself, and that shouldn't be happening anymore. I think people need to just be clear, what they know is what they know. Just, collect your information, your observations. Integrate it into your life and continue to live your life while we're trying to get some answers here
--------------------------------------------------------------------------------
I: Exactly. What aboutA… We were talking a little bit today and you were talking about carbon monoxide as an attractant for mosquitoes. Talk about that a little bit, about how things, about we can be an attractant for various things. Everyone is trying to figure out why this is on me and not on the guy next door. We were in the same location at the same time, and I got came back from wherever and I got sick and he didnA’t. Although, You do say it is somewhat contagious. Yet we do have many cases where it doesn't seem to be contagious at the present time.
D: I think this is a big mystery. It may be that some people one may have, one, zero symptoms, even though they've been exposed. Two, Other people may have a very strong immune system and they're able to resolve it, cancel it, eliminate it. And Three, there may just be a little bit of russian roulette in that that person was standing in the right spot and got exposed and the other one wasn't. I think we just don't know. There may be times where it may be more likely or easier to transmit. These are all multiple questions that it's gonna take some time probably to sort out. Hopefully as we build a team, that will be answered quicker.
I: You mention a team. You already have some people pretty much involved. Tell us a little bit aboutA…not necessarily who they are.
D: The reason for the secretism is that only that it's important to strengthen the team so that everyone feels comfortable with the observations that they're making so far. When you go too fast with that, it makes those people that have an interest get uncomfortable. What I've been doing is working slowly with different practitioners and microbiologists and people in various fields of medicine to identify people who show a real interest. With a team might be able to eventually see people who have this and have them go through a process to most precisely diagnose what is going on for them. So, at this point we have a couple of practitioners with real interest. We, as I mentioned, we've had some definite findings. I expect in the next month or so to have some more significant findings that we can start to share. So, I do see this moving forward and not getting hung up.
I: That was my next question. How long do you think it's gonna be until we have some answers for people. They're suffering so badly. So many people are using things that A…maybe taking a bath in bleach. That's an example. And of course, those things are clearly dangerous. Do you want to comment on that a little bit?
D: I think that the thing that speeds up the process are issues of funding. Once we get a sound base, we should probably get some pretty rapid interest from other foundations to fund epidemiology studies or different studies where we can look at the patterns that are coming forward and put the pieces of the puzzle together. And I'm hoping that that will come at a fairly rapid pace once we get a couple of key pieces put together. The difficulty is that a lot of the people who would be interested are only interested if they can stay in the space where their expertise is. And so if they're put on a panel, then I think they'll feel comfortable making statements about their area of expertise.
I: Do you think that this is possibly, that people get it from their environment. At one time when we did our first questionnaire. We thought that everyone had contact with water damaged wood. Now we're seeing in the new questionnaire. That in fact Most people did not have contact with water damaged wood, most people did not have Lice or scabies. And most people used a pesticide for the first time with regard to this. A lot of the early thoughts that many people were thinking and considering now look like that just may not be the case. Do you have any comments on environment? I mean, how did your people get it?
D: I would say that there is some concern about environmental exposure. In the same breath, I would say that people still have to lead their lives in a normal way. Clearly that 's probably is the greatest fear that people have is that can someone catch the same thing that I'm experiencing. And consequently, I answer this in a very cautious way because people have gotta keep their jobs, they've gotta lead their lives, they've functioning and keep it together, if you will, while we're coming forward with some answers with this
I: Can they get it from sitting in a chair or wearing a shirt that they had on the day before?
I: I think that it is reasonable to say if you've got a lot of chairs and stuff that are fabric, that you would look toward using things like steam heat to clean them or definitely be cautious about not wearing the same pair of clothes two days in a row if you're able to do that. Or if you can simply just steam iron them or steaming them in some way, should probably really reduce the likelihood of that staying in the fabric. I think this is the part that we don't know. Just doing reasonable precautions like thatA…
I: I wonder if anyone has thought of sending some fabrics out to be tested. Would that be helpful? Would you consider doing something like that?
D: That's a good question.
I: Everybody complains about their clothes and their furnishing and their car. And that's a real big problem.
D: I think that it's reasonable to take those kind of precautions. At some point it would be nice to have a place that people that who specialize in those types of areas could look at those types of materials. But, at this point, I don't know how long it's gonna take to get that aspect together. So I think that it makes good sense that people take the tips seriously and use them. And with that, from what I'm seeing, I think that people can continue their normal lives.
I: Okay, well, do you have anything that you want to add?
D: All I want to say is I think that one, that I believe that this is a bona fide condition. I believe that it deserves research. And, I would hope that we're able to move in a swift way so that we can put together a structure that can be followed by other practitioners. And for people not to become discouraged that they have not been heard or that here is no hope. I think that unfortunately, sometimes, when new things come forward in medicine, patients are labeled as crazy or something psychological is going on with them and this is a pattern. And, I think that with the volume of people who are having these issues and the histories being so consistent I think that it's real clear that there's something is going on.
I: Well, it's too bad that so many other doctors, most in fact, don't agree with you. And have overlooked this for such a long time.
D: I think part of it is, once we can develop a protocol, they can start to show them ways to look. Then their interest level will increase. And what's most important is developing a network of people who have an interest.
I: A lot of people have found more than one organism in their skin. Like I remember one lady who actually found a worm in her face, a lepidoptera or something like that. Other people have found bits and pieces of maybe an ant, or a beetle, or a tickA….which that could be there. Do you have any thoughts on that as to why?
D: All of these observations are valid. What I would encourage people to do is just if they have they have the opportunity is to it write down. I think by keeping reasonable records about your symptoms, when they occur, what makes them better, what makes them worse, what ii is that you feel and experience. This is very helpful. And so I would suggest if people keep a little diary or and write down what it is they're observing. And honor what it is that you experience as an individual. That information will be very helpful.
I: Doctor, people want to know what this is. Obviously at this point, you don't know, we don't know. But, I want you to assure people that you will be looking at everything whether it's fungal or filarial or whatever. Can you talk a little bit about that?
D: I think that we're doing is we're definitely developing a protocol we that we can be able to be clear that we're not missing anything. We're taking a very serious approach to this. And, we want to make sure that we're not too quick to come to conclusions and can start to look for a good screening test, for example. In addition, make sure that we don't miss anything that we maybe didn't consider. Because I think this is where you can back yourself into a corner and really miss the real cause of the problem. I would just say that I want people to remain hopeful and united and work together. Pay attention to what it is you're observing, experiencing. All of that is helpful. And will accelerate and speed up the rate of coming to some answers.
I: Let me make this clear for everyone who's listening, you absolutely believe this. Is that correct?
D: Oh yeah. Absolutely. There's no question about it. I think that we need to move past the questioning of ourselves. It happens so much that so many people split you, if you will, when you go in and ask for help that you start to question yourself, and that shouldn't be happening anymore. I think people need to just be clear, what they know is what they know. Just, collect your information, your observations. Integrate it into your life and continue to live your life while we're trying to get some answers here.
I: A theory is just about what everybody has. And I guess, until you guys figure it out, I guess that's we'll all have to hold on to is our own personal theories.
D: That's where science begins. Everyone is making their observations. This is what's happening is everyone's making their own observations. These are so key. Medicine has never advanced unless the patient, if you will, makes an observation. That's where medicine grows. Because we listen and we're able to learn. What people are doing is they're really pioneering. Maybe they didn't volunteer for the job. But, nevertheless their job really is to document their experiences so that we can be able to rapidly come up with a diagnosis. And this is probably, if you think about a diagnosis that was accelerated because of the internet this has gotta be the one. Because Lyme's disease was before the internet. And here we're, this is an Internet driven diagnosis. Where the diagnosis is being accelerated because of the use the internet.
I: We have so many brilliant people in our group, who've come up all kinds theories and they do not sound half-baked. And only with your research and dedication through scientists will we find out what's really going on out there. Thank you very much.
D: YouA’re welcome. We also depend on their observations to make a full team. Everyone has a role. And what I'll say is that they don't have to feel like they have to go out steering on their own anymore. So that we can all come forward as a team. Everyone can comfortably be in their space and know that the mission is being achieved.
I: Very good, the mission is being achieved. I think we'll close on that. Thank you again. And to everybody who's listening, we need to stay united, stay tight and get there and we will do this. I honestly believe it. Thank you all. Goodnight.
D: Goodnight.
