Posted by Librarian on 4/2/2002, 1:23 pm

I: Exactly. What about 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 didn’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 about 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 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 that 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 tick .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