Where is the Mold Hiding?

Mary Ackerley, MD, MD(H), ABIHM

International Society of Environmentally Acquired Illness. There’s a lot of ground there, but the idea is putting the stuff we’re always talking about: mold, lyme, borne illnesses, heavy metals, all the chemicals that have been dumped on the planet since World War II, et cetera, into the soup of like, hey, we’ve got a lot of chronic complex illness patients who are really ill, and doctors really need to be able to think in multiple ways to get them better.

Eric Gordon, M.D.

And that is, really, the whole point of this summit has been to present people who think in multiple ways. Unfortunately, I think, I think Mary’s, unfortunately, still one of the few who really does think in multiple ways, but what we’ve been presenting is many doctors who have different points of view, but Mary is one of them that carries all of those points of view and tries to remember that as a patient, one of those points of view might really illuminate your situation and help you, and what we’re gonna do today is go through some of the assumptions that many patients have, and unfortunately, many doctors have about what’s going on with them, you know, and you know, it’s, just to start, we’ll talk a little bit about the difference between colonization with mold and just allergy with mold and, Mary, what’s your thoughts on that?

Mary Ackerley, MD, MD(H), ABIHM

So, I think mostly I’ve trained with Richard Shoemaker and Michael Gray, and Benson was where I learned from in like 2009/2010, and so inhalational toxicity is really what I would call it is it’s been inhaled, the toxins that are in a water damaged building, when they’re inhaled, create an inflammatory storm cascade throughout the body, creating illness, and that’s mostly what I think of with mold, but certainly there’s colonization. I mean, we know fungi live in the body, and some of them probably are supposed to be there. That’s the part that’s really interesting is this, hey, we have a myobiome as well as a microbiome, and so we can’t kill all of them. 

They actually seem to be helpful in some way, but they’re not helpful if they get their way into the brain or the sinuses particularly, or in the gut, they can certainly overrun things, so they both exist, and that’s one of the problems, because I think we’ve been talking here back and forth is, is if you’re gonna think in black and white, you’re gonna get, really have a hard time with all of this here, because it’s not black and white, there are lots of grays. 

Mostly, I think patients I see mostly have more inhalational toxicity and can have some colonization. I think that’s where most doctors fall. It’s a mixture with more of the inhalational issue, but again, it’s like data and it’s very hard to biopsy brains while people are still living, so we don’t know that much about it. It’s hard to even get really good biopsies of the sinuses and fungi, and we’re still looking at the gut and wondering what is supposed to be there, not supposed to be there going on, so that’s the state of all of that.

Eric Gordon, M.D.

Yeah, and this has been, you know, a question for all of us, and again, it is what we’re gonna come to, I think, over and over again is it’s listening to the patient’s experience and seeing how they respond to therapies and weighing what’s more important. You know, if somebody goes to the coast and feels fine when they’re, you know, right on the ocean, you know, colonization might not be that important, but if they stay sick, no matter where they go, then maybe they are carrying it, I mean.

Mary Ackerley, MD, MD(H), ABIHM

I mean, it would be obvious, yes. So, right, and that’s how you have to think. You’re always thinking like, so what explains this patient’s experience?

Eric Gordon, M.D.

Exactly, exactly, exactly, and I mean, we’ll come to this over and over. I just so applaud your willingness to look at the data and the patient, and we’ll come back to that as we go along, you know, and then the other big issue that you have, and I really respect your experience with is looking at the different laboratory values that have been espoused over the last years.

Mary Ackerley, MD, MD(H), ABIHM

Last year, right. I mean, I’ve been doing this long enough to see things come and go. Maybe nothing’s gone, but a lot of things have come, and so when I see people using only one type of testing, I’d like them to be able to use all types of testing, because as far as I’m aware, there is not one test out here, one biomarker, that’s going to nail it for anybody. We’ve talked about this too. It’s the sort of biomarkers, if you want to call them that, it’s the hormones, it’s the cytokines that seem to be elevated or depressed with mold illness. I find them really useful for a couple of reasons. 

One, you learn a lot about a person, how inflamed they are, that these things like TGF beta actually have a lot of valid meaning about TH2 balance versus TH1 if you just look at it as that, and the lack of hormones or the excessive hormones, like estrogen, it’s just really helpful in treating, so I find it hard to not understand why people don’t want to measure that, especially since most Americans have insurance and would like to use their insurance, and I just make the point it’s, you know, if someone asks me to look at the lips and say, do you have mold or not mold? I might say, well, looks like you do. I’m never gonna say yes. I’m like, but if we go down a year and we’re treating mold and they all are getting better, going the right way, it’s like, yeah, this looks like we’ve got the right treatment, and it was mold. 

So I really liked to look at serial movement and like to see improvement. And then along came mycotoxin testing, which makes sense, sort of, except I think more mold is excreted through the feces than the urine is what I understand. But urinary testing, it’s not as regulated. People can do it without a doctor’s order. It’s easier, it’s just easier for a lot of people to give urine. So you have to understand all of that. It might not be the best place to be looking at mold to begin with, but that’s where we are. And so you have to decide, is it showing what your body’s capable of excreting or is it showing what’s actually in you, and that’s a really important question.

Eric Gordon, M.D.

Yeah.

Mary Ackerley, MD, MD(H), ABIHM

Right? Some of the healthiest people I’d say seem to have the highest numbers, you know, and you see someone else in their family who’s really sick, who’s not showing much, and it’s hard to not get to the conclusion that that sicker person can’t get it out. So, I think we were also discussing before there are different companies who do it in different ways, and they really are measuring different things. I mean, it’s the same urine, but the tests they’re using is what the result you’re gonna get, so if you’re looking at just free and bound versus the whole total, you’re going to get very different numbers, and when I look at them, I’ve seen all the time patients who’ve gotten both tests and they don’t make much sense in terms of you’re looking for like a legal case like this, you know, mold that grew in this house is in this person’s urine. 

But I think it shows, it will often show, hey, it looks like there’s a mold problem. Both labs are showing that you have some problem with mold here, just not the same one, and your history is consistent, and I think that’s the point I always make when even learning is just please, don’t just tell me you have a positive mycotoxin test is what are your symptoms, you know? What’s your history? If you’re a doctor, you’re a clinician, you cannot just diagnose somebody, you know, from a urine test or from the labs without histories. Why did this person go and get this stuff? It’s because history tells you so much. I was well, we moved into this home and three people became sick, my kid’s failing out, my husband can’t work and, you know, has asthma, and I can barely get out of bed myself. 

Good history, you know? You know, why did you bother with the mycotoxin testing, you know, if they don’t have much money left? And that’s another thing to just consider is they’re all expensive illnesses we’re talking about, and most insurance doesn’t cover it, so the more you can do with your ears and listen, and the more you can do with doing physical exams or getting bunches of symptoms is, you know, the better doctor I think you are and the more helpful you’re gonna be.

Eric Gordon, M.D.

Yeah, absolutely. You know, this goes back to the issue of testing is that testing is nice and works great when something is broken. You know, broken leg, bullet wound, pneumonia, hey, the tests are great, but when people don’t feel well, the tests all become so-so, and you know, and they teach you that in medical school history is 90%, but we forget that when I think the world has gone to the seven minute exams, to be fair, but you know, and just the idea that question of does my high mycotoxin test mean I have, you know, a real big problem? 

And yet you’re so right, because it depends on the person, ’cause I mean, we saw this back in, I mean, I doing, I mean, mercury testing, I started doing that in the early 90s, and we’d see that really healthy people who would happen to eat a lot of fish could have mercury levels on provoked urines of 130. They were fine, and some of my sickest patients had provoked urines of 14 and would never change, because they couldn’t, they were sick because they couldn’t get rid of it and they couldn’t move it, and they couldn’t store the probe. I mean, and yeah, we just have to remember this is an organism where we live in a sea of mycotoxins and most of us do just fine.

Mary Ackerley, MD, MD(H), ABIHM

I was gonna actually, someone who came running up to me today, it’s just like, you know, so-and-so is just, you know, upset. She still has, you know, this high mold, you know, in her, you know, GPL toxin, it’s above 100. I said, well, she’s always upset. You realize this is her fifth test. She always says, I just don’t know where it’s coming from. And she goes on, she’s living fine, so. You know, it’s, I can’t move this person. I do think it’s her home as far as we’ve tested, but no one’s been able to quite find it, and you know, and she is, you know, really pretty okay, so we have to pay attention to the test too.

Eric Gordon, M.D.

Yeah, that old story, you know, the history trumps. You know, they, I mean, that’s why, you know, the rank, I mean, you know, the people who probably upset me most in medicine are infectious disease doctors, but to give them credit, one of their big points is you don’t order, you don’t look for a disease. I mean, all the doctors, but the infectious disease doctors, I have to say this especially, don’t do the test if you have a low probability of the person having a disease, because we have so many false positives just by the nature of randomness and the fact that the body is more complicated than we have any idea.

Mary Ackerley, MD, MD(H), ABIHM

That actually would probably sum up everything, that the body is more complicated than you or I will ever really understand, as hard as we try, and most people who are just looking in small boxes are never going to appreciate how incredibly complex it is.

Eric Gordon, M.D.

Yeah, I agree, and it’s very hard for patients to understand this, because I don’t, I won’t, I want people to know that he shouldn’t go and give up hope, because the doctor’s not gonna understand. The good part about being a human being is that you heal, you know, we just have to get close. If you take your car in, I have to fix it right, but with people, I’ve just got to get close, and with a little luck, or you just have to get close and make a few changes in life and sometimes you get better.

Mary Ackerley, MD, MD(H), ABIHM

It’s true, it’s true.

Eric Gordon, M.D.

But, just going on, but we have to be careful. We both love to wax philosophical.

Mary Ackerley, MD, MD(H), ABIHM

I think the point here is if you’re seeing doctors is please make sure someone has listened to your history or read that history from birth of your illnesses, because that’s actually really important, and someone took a review of symptoms and went through your brain symptoms and your heart symptoms and your pulmonary, and they’re not missing your shortness of breath or immediately assumed it was the BZ, I never thought of any other possibility at all, is that that’s really, really important.

Eric Gordon, M.D.

And on that note, let’s talk a little bit about the diagnostic quandaries between, is it mold? Is it tick-borne disease? You know, do we do a test or do we think, and.

Mary Ackerley, MD, MD(H), ABIHM

And then I think you and I were just talking earlier in this clinic, what we want to keep making to people is mold is a brand name. There is not one mold. There’s like 200 molds that we’ve identified, but they grow in water damaged buildings, there are at least 30, you know, toxic species of Sampson Pam’s, you know, that have been identified that grow. Mycoplasma is just an interest of mine, because you can measure it easily, and you find a lot of people with really high, positive IgM, IgG mycoplasmas who have asthma bronchitis, and no one has ever looked at their mycoplasma. Maybe tick-borne. I tend to think it’s more communicated in homes and living in water damaged buildings, but it’s, I’m just saying there’s, there is a lot of stuff when you’re talking about mold, and the same thing with lyme is it’s a brand name for whatever the tick is carrying, and the ticks carry a lot of things, and then we talk about spiders and fleas and it gets pretty complicated. 

It’s very clear insects give us a lot of things that then live in us and cause damage, and you want to try and figure out what’s going on and try and change things to do it without doing more damage in the meantime, and I think that’s important also is, you know, not really hurting people with the lyme, because I think by now many, many people know that. I’ve just seen a steady trail of people from California, mostly coming here, who’ve been treated for lyme or, you know, for four years or so, and never got better for the first four months and then plateaued and just kept going and going, and have spent a lot of money, and really, when you look at their functionality, how much can they actually do in the day, how much time out of bed, how much can they be with their families? Can they still work? They’re not much better than they were when they started, where mold was missed. 

So those, you know, I’m not sure I see that as many anymore, ’cause a lot of people now have caught on to the fact that mold is probably the more important problem to catch and the one that if you don’t treat it, your directed, targeted killing of infectious organisms is not gonna work very well when you have high TGF betas, which is TH2, which is inflammation, and just that one simple point is just really useful to understand is they, people can have lyme and all sorts of stuff when they have high inflammation from living in a water damaged building. The antibiotics don’t kill enough, the body just continues, you know, making more and breeding more. So, those are the big ones I think, in terms of why, you know, what sends people into the sick category, but then there’s a whole bunch of other things that are found that evolve in there, leaving little brush fires that now become much bigger as you try and get people whole again.

Eric Gordon, M.D.

Yeah, well, I mean, I thought that, you know, in the early days I thought you really needed a lyme infection before people generally got into trouble with mold exposures. I mean, again, that was just a story. I don’t know if that’s true, but it’s something we saw. Again, you know, but the problem in clinical medicine is that we don’t have any really good denominators. You know, this is what we see, but how many people out there, you know, don’t, this doesn’t happen to, but you know, the immune system shifts, something changes how your body deals with the inflammation and the mycotoxin response, and having infection or toxin load. 

I think that’s, I mean, you see this too, is that the toxin load and whether it’s emotional, and I think that’s something we’ll talk about later is huge, but, you know, and then each one of these things somehow upsets the balance of the immune system. I mean, ’cause really, the serious markers in my mind, I mean, at least the inflammatory markers, the MSH, the VIP, the TGF beta. I mean, yeah, we started chasing them early because we were always looking to explain why our patients weren’t getting better, ’cause we were doing a lot of lyme in the early 2000s, and we had just what you were seeing: people, we were treating them and they didn’t get better. In fact, some of them got worse until we kind of figured out who not to do this to, you know, but so those markers were helpful, because they were still elevated, ’cause basically your innate immune system was doing a tap dance and it wasn’t listening. There was no self-regulation, so anyway, long and.

Mary Ackerley, MD, MD(H), ABIHM

I think one got measured more early than mold, so it was easier to see lyme mold, even when you knew mold might exist, ’cause it’s only now that we have the IEP is we have people who are really saying what, you know, someone like a Michael Graham saying, you know, 2000s, tons of mold in Arizona, well, we know that, is that well, yeah, if you start looking for it and use moisture meters and so, yeah, behind the walls and in the roots and stuff, we have tons of mold, so it was kind of ignored. Nobody believed that that was a problem, and so now we have maybe the oversight that everyone is scared of a speck of mold, which is probably not helpful either.

Eric Gordon, M.D.

Yeah, because we’re designed to live with it. It’s fine, it’s not gonna kill you except for a handful, but it usually takes a lot, but you know, but this is the history of medicine, ’cause you know, even the alternate, what I still call alternative medicine, I guess now we call it integrative medicine, whatever the name du jour.

Mary Ackerley, MD, MD(H), ABIHM

Functional integrated, there’s always, you know.

Eric Gordon, M.D.

But you know, we forget, I said that, you know, Dr. Crook, and I forget the other gentleman’s name, you know, this is in the 70s, they were talking about, they just, they focused on candida as the mold, but when I look back, you know, we were treating candida and parasites, and especially when I started doing this in the 80s and 70s and 90s, you know, and you know, it’s just like, you know, and that’s where, you know, Richie, Dr. Shoemaker was helpful is that he kind of slapped us awake and it realized it was more, in the early days, it was more than the candida, you know? And you know, and as we’ve learned, we can just see that when the body is overwhelmed, and I think that’s what’s been happening, that’s why you’ve seen so many people who are, who don’t get better like they should is because we’re, you know, well, you know the story, we’ve just totally polluted this wonderful planet.

Mary Ackerley, MD, MD(H), ABIHM

I think that’s one of the reasons ICI exists is, you know, clean air, clean food, clean water, that’s what you need to be healthy. It’s really not that hard. And where do you even find that? It is really, really hard, so I’ll get asked, so where do I live now if I could live anywhere? Well, I don’t know, figure out a place where not only do you not have mold, where it might be dryer, but it isn’t gonna have fires. Okay, and then make sure that, right?

Eric Gordon, M.D.

Right, and it’s, yeah, where I’m living now, a lot of people have to leave during fire season, ’cause once the fire starts, it’s untenable for people with any kind of inflammatory issues, our patients, I mean, it’s you, can’t, it’s terrible.

Mary Ackerley, MD, MD(H), ABIHM

Smoke is really bad. I think the worse than mold, in some ways, and the TGF betas, I began to see that when Tucson got it, and the TGFs just kept going up, and it’s like, I finally looked it up and yeah, people have done the research, small particles, you know, causing inflammation of everything of TGF betas too. Yeah, and it’s pretty bad. And actually, you can’t really escape smoke, which is hard to even kind of escape, mold’s a little easier, so.

Eric Gordon, M.D.

Oh yeah, no, no, it’s, we’ll talk more about that, but let me just go back to, you know, where do you, ’cause you’re someone who I look to to help understand NeuroQuants, ’cause like all of us, we, yeah, I’ll say this again. You know, I love the tests because I keep hoping that I’m gonna get the equivalent of the x-ray.

Mary Ackerley, MD, MD(H), ABIHM

It’s really rare. It’s hey, this person has mold, and there’s a touch of lyme right here, but you know?

Eric Gordon, M.D.

That’s what I’m looking for, that’s what I’m looking for, and so are my patients, but we haven’t found it yet, and I’m talking about looking for lyme.

Mary Ackerley, MD, MD(H), ABIHM

I love NeuroQuants just ’cause I love the brain. It’s, you know, we all have areas of interest, and to me, how does the brain function is, you know, really mysterious, still, it’s so grand and amazing, and the fact that you can actually measure the size, the volume metric size of these really important regions. We know they’re important, we know what they do that you can get here in Arizona for like $320. You know, we can get an MRI plus the interpretation. It’s like, you know, why wouldn’t you? That’s cheaper than the mycotoxin test, you know? And so, and you know, Bredesen makes the point, and I think it’s true. 

It’s, you know, people should be getting those maybe when they’re 50, especially if there’s a family history of Alzheimer’s, because you begin to get an idea of maybe you should eat a little better, et cetera, so it’s, there’s a real, just on a very basic level. I encourage them, before you’re even sick, it is like, you know, don’t get caught by surprise, getting older, that the brain’s not there, you might, it’s a slow progressive illness, so NeuroQuants are great for looking at Alzheimer’s. That is definitely there. They might help in MS some, because you can look at lesions. 

Again, it’s not particularly changed them, but look at them. So, you know, there are some things that are definitive about, but in the land, you know, I started with thinking that, again, it would show you who had mold versus lyme, which I think that I’ve decided is a false dichotomy. It’s like, it’s a fight that’s been going on between different doctors. Patients don’t really have, you know, they don’t come to mold versus lyme. So many have both that it’s scary. It’s like, which one is predominating, which one should we need to fix first might be the better question. 

So it can show inflammation essentially or microvascular cerebral edema is that there are regions of the brain that are inflamed compared to other age match controls, and I really like the fact that there’s a big database of age match controls, sex and age match controls that, again, takes it out of the realm of subjectivity that the individual researcher is, we all know that there’s a bias when people are doing research, that they are always going to, you know, somehow inflate their numbers. That’s why we have, you know, double blind placebo controlled studies because it happens. And so, so NeuroQuants do show, you know, the very abnormal ones I’ve seen. It can’t be that, you know, the whole population is abnormal, but my interest has been really, since they came out with the triaged brain atrophy that measures like, 50 regions is, wow, you can see the whole limbic system. Oh my goodness, how could it be that like 50% of my patients are in the 99th percentile?

Eric Gordon, M.D.

They’re very special.

Mary Ackerley, MD, MD(H), ABIHM

Okay? Mathematically, I think we understand that that’s not really possible if there wasn’t some, you know, predilection between mold and inflational toxicity and the amygdala, and at this point, if you know anything about the way, you know, human psychology or brain or neuroscience, the amygdala plays in a tremendous role in fear, in setting off the whole fear system, the autonomic nervous system in the brain, in the body, and to be able to see the size is really pretty interesting, and then see the pieces, the amygdala usually talks to the hippocampus, which is, you know, the amygdala triggers the hippocampus. The hippocampus has the emotional memories that come up, and for many people that I see, I think many people see with mold. 

We see a lot of, you know, sort of panic driven dysregulation where small things become very inflamed and very overstated, and people are usually in a state of high anxiety or what we call somatic hypervigilance or looking for the worst all the time. They don’t feel safe in the sympathetic overdrive and you don’t heal in this state. It’s a state of panic. It’s not a good place to be for the patient or for the people around them, because it’s hard to be, you know, a partnership with somebody who is, you know, always looking for the worst, and always finding the worst sometimes. So to see it actually, and how it can relate to inhalational toxicity is interesting. 

Then you look at the thalamus. The thalamus is the place in our brain that is like the great receiver. All sensations channeled through the thalamus, you know, so touch, taste, smell, odors, although the thalamus, my God, the thalamus is like a 99th percentile in so many people as how’s that going on, and we find out the thalamus is a site of mast cells in the brain, and so is the amygdala, actually, but the thalamus is really well known is like, could mast cells be turned down? Well, that makes a tremendous amount of sense that mast cells in the brain would be contributing to kind of inflammation we see, but then you, so you see the thalamus, you see the amygdala, you see the hippocampus, you usually often see the cerebellums as being bigger too, and that leads to problems, and you begin to understand the person sitting in front of you who’s so anxious, who is having a hard time sleeping, who’s having a hard time really following directions or wants to do everything and, you know, do it all at once, and you know, is having a hard time taking a deep breath and said, hey, this is where I’m looking at. I can see that the way to treat it is probably not selected, so. 

I can tell you, it’s going to backfire on patients like that. It’s going, they’re the ones who become suicidal who are up all night when you give them a benzo. It’s because it’s a paradoxical inflammation, but you can see it in their NeuroQuant, and for a lot of people, that’s really reaffirming to get this test, I find, because they’ve had the experiences, they’ve been told they’re psychiatric. I mean, almost everybody who’s gone through this journey has been told by somebody that, you know, they really should see a psychiatrist. 

They may have taken some of the psychiatric meds and had bad experiences, and to see that their brain is abnormal is very affirming in a lot of ways, because there’s such a kind of traumatic aspect to just the whole journey of chronic illness. So, that would be the limbic system, and sometimes you’ll see again with the swelling of the cerebellum is everyone thinks of this pain back here, this pressure, it’s just so common, and that’s where the cerebellum is, it’s 80% of the neurons, and it’s like, you know, 90th percentile or more in the white matter, and so many people it’s like, oh, does that explain why we can’t seem to, you know, do a suboccipital release, you know, which really can be helpful, and that’s where I got into my interest in the neck and the brain, and which we’ll talk about, yeah.

Eric Gordon, M.D.

Well, you know, why don’t you do the case?

Mary Ackerley, MD, MD(H), ABIHM

Okay, it’s definitely.

Eric Gordon, M.D.

It’s beautiful, I don’t want to stop you.

Mary Ackerley, MD, MD(H), ABIHM

Right, is I look at the NeuroQuants and I can see that, and so you see the cerebellum so big, and I did that a long time ago. It’s before we even had the triaged brain atrophy, really, is I just took a list of like 150 patients and their cerebellar size and just whether they were hypermobile or not, and guess what? Guess where all the hypermobile patients were clustered? With the biggest cerebellums, and you know, I can’t show you a picture, I don’t have it right here, but the cerebellum at the back of the brain, that’s your balance center, we all know that much, so there’s a clumsiness when it’s not working, but it’s also a center of learning and motivation and has lot to do with trauma too, and so that seems to be very effected, and also, my sense is I think it has something to do with EDS. It’s just, it’s more enlarged, and actually amygdalas are. 

There is real research in Ehlers-Danlos that the right amygdala, which is the one that’s most caring, so life or death signals to the brain are elevated and enlarged in Ehlers-Danlos, which means that I’ve gotten to see and more and more, like 60% of my population is hypermobile with large cerebellums and large amygdalas, and they also can cluster together, and I think, you know, for me, I have a real interest in and I’m okay with it because I don’t find very anxious people to be that hard to be around and sensitive people, I understand. I’m pretty sensitive myself, so I don’t think that it’s a totally weird thing that, you know, small amounts of medicines don’t feel good and you’d rather do natural stuff. 

So, that’s probably why my interest had been, hey, you know, this is interesting to me and also interesting because I’ve always loved craniosacral myself. I know you studied osteopathic medicine at one point, because you loved it so much. I just had it done as body work through the years, and it’s like, wow, that feels so good. Yeah, it’s so, it’s, and so, you know, referring people like that to just cranio work and, you know, it’s really weird. Sometimes people that have never heard of craniosacral work, like they don’t know what it is, are a craniosacral therapist or a DEO, and if you have to explain it, is that actually the way your body sits, its integrity is actually really important too. It’s, so that’s been a real interest. 

And the other thing we see and I might take it a little bit more in line is kind of cortical atrophy is you’ll see with lyme, I think, less gray matter in the frontal lobes, and I don’t see it in mold as much and pans sometimes, but not the beginning part of pans, but in lyme and people, you’ll see like their cortical weighs, like, the 20th, 30th percentile, and you’ll see that like the inferior and medial frontal, which is the tracks that are supposed to inhibit your limbic system, they’re supposed to be like, a pair of brakes, you know, in a car, you have a brake and accelerator, right? People with the cortical gray networking as well do not have those, the breaks, they have an accelerator, and you know those patients, because they have a hard time planning, making decisions, executing, using the executive part of their brain. That is just an observation, it’s not something, but when I see somebody who has no swelling, no blue, it’s like not sure, but I don’t think mold or mast cells are the major issue.

Eric Gordon, M.D.

Yeah, well, I think that is the kind of, yeah, in my much more limited experience, and I’m often, you know, looking at those reports and that’s been my gut feeling is that when I don’t see lots of swelling, it really lowers the mast cell probability quite a bit, but, and you have given me so many questions, but we don’t have time for all of them right now, and one thing you’d have to tell me if you can’t do it in a minute now at length is the paradoxical reaction to benzos is a subject that some day I need to hear a lot about, ’cause I’ve been fascinated by that my whole life, and I’ve never quite understood it.

Mary Ackerley, MD, MD(H), ABIHM

The easiest way I can understand it, ’cause you certainly see it, and it’s like, you know, and these people are always told, well, A, it didn’t happen. The gaslighting in the medical profession is really well and alive. It didn’t happen, you are wrong. You must not have taken it, you did something else.

Eric Gordon, M.D.

Because of the value, yeah.

Mary Ackerley, MD, MD(H), ABIHM

This doesn’t happen to anybody else is, I think it goes down the wrong pathways to tryptophan is this goes down the quinolinic pathways or quirorinic instead of just going on, say, to melatonin to somehow the inflammatory pathways are more pronounced in a brain and that, you’re gonna see that inflammatory response again in the swelling, so I, that’s my best explanation. It’s probably more than that. Pathways, again, we barely understand the brain and the pathways and then how the pathways all regulate each other, so that would be my sense with, but it’s, you definitely hear it, and you should respect it and, and say, well, that’s real, and probably we should be working on inflammation would be the best response to it, and let’s just stay away from these. CBD really gives me that response, which is one reason I love CBD, and it’s been really, really well-researched and the government owns the patent on CBD and did a lot of research. They own it, and I think that’s one of the best winners I’ve found, the best, you know, what things really work is CBDs and low dose naltrexone are sort of my favorite recommendations for inflating brains that work consistently without doing harm.

Eric Gordon, M.D.

Yeah, I think that’s, yeah, very true, and as you say, without doing harm, because that, that is always the problem of using medicines. It’s why I love them, but they all have downsides, and then yeah, and sometimes not very nice ones. So just, we gotta wrap up, but I’ve got a few other things I’d just love to hear your opinions on, okay? I mean, These are straightforward. These are big philosophical pictures. These are simple, straightforward ones. You know, I, one of the things that really intrigued me was that the first ICI meeting you gave, I thought was the best talk ever on like treating MARCoNS. It works sometimes. I don’t know why, maybe I’m paraphrasing, but sort of, and I just love that, because that had been my experience, and people didn’t talk like that. Everybody acted like he was, you know, the mother’s milk, you know?

Mary Ackerley, MD, MD(H), ABIHM

It did work, and you were talking about how Kita Khan saw in the early 2000s when they started out using BEG sprays, like, people got better, and I got a lot of Shoemaker’s patients when I started, because I was like the second person certified and he wasn’t seeing people anymore, and they had all been tested for MARCoNS and treated but never retested, so I made maybe the mistakes.

Eric Gordon, M.D.

Oops, you just froze for a second. Okay, let’s see. Are you gonna come back?

Mary Ackerley, MD, MD(H), ABIHM

Yeah, it’s showing me I do have the internet now, so.

Eric Gordon, M.D.

Yeah, we just had a momentary pause, so will you just tell me about your experience with retesting people who had already been treated with BEG spray for MARCoNS and you’re retesting and.

Mary Ackerley, MD, MD(H), ABIHM

Then they still had MARCoNS. No, that’s not true. I mean, there was a time when maybe 50% cleared and they felt better and it was good and I was optimistic and I’d do it again, and then maybe I get another 25 or 30%, but I think the slideshow I showed was by, you know, 2017 or so it was getting harder and harder to clear people, and I showed a couple who were sharing a lot of the same organisms who went from like six resistant to nine resistant, up to 12 resistant, including vancomycin resistant and MRSA resistant on BEG, at which point I just sort of stopped and said, I am not making these people better, and left it, but I’ve showed what a lot of us had been looking at was the increasing use of an antibiotic, and the nose was just breeding out more antibiotic resistant, and I have tried with people for years with, okay, so I talked about cavitations and we showed that in the cavitations and hey, that’s exciting, and you know, we’ve got cavitations done and people, some people feel better. 

It’s like that whole treatment thing is this might be something that helps, and we might clear the mark on it or not. I’ve had people go and get tonsillectomies because they’re so, they really want it and they have MARCoNS, and adenoidectomies and medications, and we still have MARCoNS and they refuse to give up, and I just said, look, I’ll write you what you want and you can keep going at it, but Willie, we’re four years in, you’ve taken everything out. It’s your immune system, okay? It’s your immune system. The other thing is that people can carry MARCoNS and still get better, and I like to make that point because I have a number of people who, if you’re honest about measuring and you wait a few weeks or wait a month and retest, you’ll find a lot of people never got rid of it or just, you know, came back the minute you let it sort of grow again from tiny little regions you couldn’t quite catch with your, you know, swab, it’s back, and so.

Eric Gordon, M.D.

It’s a colonizer. It’s hard to get rid of things that like to live with us. It’s really not trying to hurt you.

Mary Ackerley, MD, MD(H), ABIHM

No, and I finally settled on, you know, Xlear if you have sinus issues, works really well, especially in a dry climate like Tucson, it’s a miracle. Learning to fill NeilMed bottles with various, you know, you can use different herbs and stuff, but if you have allergies or mold problems, you know, it’s just learning to wash your nose the same way you brush your teeth. That type of hygiene really helps a lot of people. They really, really like it and feel good. So, I’ve kind of left it there is I’ll try things when people want to, but I’ve kind of lost. I mean, I’ve just chased it for so many years and not seen it go, and also know it’s not maybe the real cause. The real cause may be sinus issues, maybe other things, definitely. 

There’s a lot of research on sinuses, depression and anxiety, and to me, it’s very clear what’s in your sinuses and your nose, it’s gonna get in your brain, and we know that from COVID even more is the practice of, that keeping your nose clean is just like, a really good idea, washing it, keeping your sinuses flowing, going to the ENT. Their scraping does more than BEG spray’s ever done has been my conclusion on it. And if you want to try some antifungal beyond silver, and I’m not even sure I like silver anymore, but if you want to try that, you know, I may try that with people, but again, I just don’t see miracles that I don’t see immediately with sorta Xlear and getting people out of bad environments really helps people.

Eric Gordon, M.D.

Yeah, number one, number one, yeah.

Mary Ackerley, MD, MD(H), ABIHM

And getting good dental work, because you can’t walk around with old root canals and expect to get better. That’s really important. So again the seasoned clinician isn’t going to insist you have to get better on something. They’re going to just find the active infections we can treat that are not colonizations, like a root canal, a root canal done bad, and get them fixed, and that’s how you proceed, I think, is just, okay, gave it a good try. Let’s, you know, not try a way.

Eric Gordon, M.D.

Yeah, because sometimes VIPs will work even with or without it. It’s not that, is that I think a thing, is that it has to be this way. Yeah, yeah.

Mary Ackerley, MD, MD(H), ABIHM

The number of patients I had who had MARCoNS who were on VIP when I kept testing for MARCoNS was very high, okay, so.

Eric Gordon, M.D.

Because some MARCoNS, you know, do break down MSH or do other things, ’cause God knows what else they do, and some don’t. Life is not as straightforward as we would like. So we have to, I think we have to wrap up, but I just see, I think there’s, let’s see, we talked about the hypermobile patient, because that is, I mean, the biggest thing I have found over the last years is just that I realized that probably the last six, eight years, everybody, I mean, my patients, literally 80% are hypermobile. I mean, like they’re 60s years old,

Mary Ackerley, MD, MD(H), ABIHM

I would say it’s at 60%, but I like to cut off at four, yes.

Eric Gordon, M.D.

No, I mean, I’m not, I usually don’t use percentages, because I generally have no memory, you know, for that kind of detail, but this is so prevalent. I mean, almost, it’s rare to find a patient that I, ’cause I, you know, like the, what is it, the Bedworth Scale or the Bed is, it’s kind of a, I mean, it’s, that’s positive, it’s interesting, but I look elsewhere because it doesn’t matter where in the body, wherever you are, if you’re hypermobile in a joint, you’ve got an issue, and if you get inflamed, it’s gonna get worse, I mean.

Mary Ackerley, MD, MD(H), ABIHM

Well, that’s really important for people to understand is, you know, I have people who can put both hips behind their head and were told they don’t have Ehlers-Danlos, because their hypermobility is in the wrong place. It’s very, they were totally they were very hypermobile and flexible in their spine, but, and I said, please, I think you understand the fact you didn’t make Beighton’s score of eight does is, you know, clearly you have positive symptoms, you have mast cells, you have blood parasites, you have somatic hypervigilance, and you’ve had trauma in your life and PTSD from being in the army, and you could, or like a circus act is, you know, I think you get that we’re gonna be treating you like a hypermobile patient, and I should point out to me, it’s interesting because it, it’s so, you can see in these patients, really, the intersection of the autonomic nervous system, the brain and the body, and that’s at the neck, it is where the vagal nerve is gonna come from the brainstem and how much that’s gonna be intersected by compression of the vagal nerve, and again, how much trauma plays into this, and I think that’s kind of where I’m ending up at the moment, and especially after watching the last year with COVID is that if you can’t address trauma, and the only way you can really address trauma is the body, is working with the autonomic nervous system. Talk therapy is meaningless. You know, it’s enough to know, as someone said, you talk long enough to find out you had trauma and then that’s it. Okay, you’re not gonna get anything out of it.

Eric Gordon, M.D.

Yeah, excellent. No, I’m 100% with you. I’ve always found, and it’s sometimes the hardest thing to do is convince people that what they need is I, you know, body, I call it body work. I mean, they just need to have somebody touch their body and feel, I mean, it’s just, but we live in a world where they think it’s give me a pill or send me to the psychiatrist, which is another pill me phase, yeah.

Mary Ackerley, MD, MD(H), ABIHM

Well, I have a lot of authority there, because I’m a psychiatrist.

Eric Gordon, M.D.

Right, you’re allowed.

Mary Ackerley, MD, MD(H), ABIHM

Forget the pills. They don’t work any better than diet or, and exercise, but I can tell you, it’s very meaningful if we can get you to actually get more into vagal tone, and that is not gonna be one eyeroll exercise done once a day. It’s going to be mindfulness of like, when you’re in hypervigilance where you can at least laugh about it and maybe do some things that calm it down, which you can certainly do, and take deep breaths. Breathing is really important. Or when you’re frozen, because that’s the part that I think we see even more than chronic illness too is the freeze of, I can’t make a decision. If I do something, it’s gonna be bad. There’s shame and trauma really locked up there and those cells, those mitochondria are locked, and you’re trying to teach people to breathe, open up their shoulders, touch themselves, you know. I mean, in COVID everyone had to learn to do a lot of things that bodyworkers can’t, which is to do cheek holds, touch, do. I use vibration plates a lot, which are really good.

Eric Gordon, M.D.

Very excellent, yeah.

Mary Ackerley, MD, MD(H), ABIHM

To just get people feeling your bodies. The more you can embody your body and feel it without panic and terror, the healthier you’re gonna get, and the more you mitochondria are gonna respond, and I think that’s where I am now is how do I get people better is to kind of call it when I see them dissociating, when I see them like this is like, hey, let’s get you up, you’re overwhelmed here. Let’s do breathing. What else are you doing for vagal tone? And, you know, and working from there, or I can see you’re hurting your neck is, you know, what are you doing to release back here? You know, do you even realize, you know, your ears shouldn’t be lining up with your shoulders down and, you know, is, I don’t even call it body work.

We call it somatic therapy. Somehow it sounds better than massage parlors, but you can, you know, you get people working on the fact, you know, that we, if you have all these pills and you’re not better, then the pills are not working, okay? The supplements are kindly helping you, but you’re not digesting them, you’re not resting, you’re not in a vagal tone, you clearly are not enjoying life and making decisions are hard, and you know, and it’s sort of getting people beyond too. One thing the DNRS is not gonna do. 

Helpful, but again, it’s not a course that ends. It’s a life that has to go on, and everybody’s on that same journey. We used to call it the path to enlightenment as I now think we call it the path to embodiment in your body, so everybody’s on that journey in healing their own trauma, I think, in terms of getting happier and healthier. None of us want to end up with Alzheimer’s particularly or whatever chronic illness, so, but it is that idea is that it didn’t end when you took your DNRS course and you’re finished and now you don’t do it again is every day is an opportunity to practice, so where you’re mindful and you know, where did your thoughts just go with that? So, I think that’s where I’m at, which is being somewhat like a psychiatrist again.

Eric Gordon, M.D.

Yeah.

Mary Ackerley, MD, MD(H), ABIHM

If you can’t get mindful about the trauma, about the reaction your body is having, if you’re not in your body at all, we’re not gonna heal, whether it’s mold, lyme, whatever the tests show, and I can just tell you that from patient after patient, that the people who get better, and it is slow, but people really do get better from all these diagnoses are the ones that just start, okay, I’m standing up, oh, I’m gonna get some prolotherapy here. Oh my God, I love physical therapy. Thanks for telling me about physical therapy, you know? It’s like I’m willing to do that, plus the peptides, which I love, plus low dose naltrexone and CBDs, is working with an ongoing thing. It’s just well beyond just sort of getting out of mold or killing some lyme, it’s.

Eric Gordon, M.D.

Well, because you know, as, stealing Dr. Navio’s story, it’s, you know, we, it’s the black, the problem with chronic illness is that thing that we, he calls, you know, the black box of healing, which is what medicine depends on, meaning like, you know, you heal, we operate and we take the lyme out, but then we need your body to heal, and if your body isn’t in a relaxed or a proper, it’s not gonna heal. And what your, you know, all these things are things that invite the body to return to a more balanced relationship in itself, and.

Mary Ackerley, MD, MD(H), ABIHM

You know what I always show people? It’s a picture of my cat, you know, on our vibration plate, and we have a bengal and she just started on it by herself and she does it like four or five times, take it, turn it off. Like, look at the cat. The cat is rubbing her neck this way and that way, going back and forth, loves it, begs for it. If she hears that little bell, wherever she is. Just please understand, animals don’t do things that don’t work for their bodies, ’cause this cat knows how to feel good and she wants to feel good and just like, let’s try and imitate that is just doing things that feel good. She’s not healing, okay? She’s just enjoying herself.

Eric Gordon, M.D.

She’s living, she’s. And what I said, I’m living in Bob’s world at the moment, but you know, the difference between the healing is when it’s really broken. The health cycle is when you just touch these places every day in order to recover and rebuild in a positive way.

Mary Ackerley, MD, MD(H), ABIHM

You know, if something bad happens to her, she shakes. She does exactly what you suppose. She finishes the trauma cycle, shakes it off there, boom, she’s ready again. That’s what you’re supposed to do.

Eric Gordon, M.D.

We’re better at remembering that, so it gets us into trouble.

Mary Ackerley, MD, MD(H), ABIHM

They have like three days’ memory or something.

Eric Gordon, M.D.

Too much memory, yeah. So, and but my last question, ’cause I want to get this in because this is, again, this for me. What are your favorite binders? I mean, do you have any, do you think they matter? Do you just use?

Mary Ackerley, MD, MD(H), ABIHM

No, I do think they matter. I wish we had precision with them. I don’t, I think that’s another setup I.

Eric Gordon, M.D.

I’m just curious ’cause I don’t either, and okay, I thought.

Mary Ackerley, MD, MD(H), ABIHM

Okay, because it depends on what you excrete and what you excrete may not be what you actually have to bind. It might be what your body gets rid of the easiest, you know? So, forgetting that is I tend to look at what can your GI tract handle, and cholestyramine, pure cholestyramine, I mean, if people have sturdy, people who just swear by it, they love it, they feel good on it, fine, and WelChol probably is my favorite because insurance covers it. It’s a white pill, so we don’t get mast cell issues with it. You can take it with food and it’s convenient, and what people will do regularly is probably the best. So, they’re very consistent with WelChol. And then, you know, I’ve been doing plain charcoal for so many years. 

Michael Gray, that’s all he needs, and it uses the old fashioned Costco, like Indian Hill clay and powdered charcoal, which makes an enormous mess. The whole thing costs like $10 a month, and it works because I’ve seen people drinking mold shakes for a long time and they get better, so I kind of laugh sometimes at like, how many brands of charcoal there are, and you know, I don’t want metals in the clays. I think that’s important. And then the other binders that’s interesting, okra, are, you know, people who will eat the food they can eat. I like, you know, Glucomannan or Optifiber, ’cause it doesn’t seem to cause problems with constipation, and that’s your enormous issue. I like acacia fiber right now, because it’s so well tolerated for so many people. 

So, I don’t really have a favorite binder. It’s really what the person is, what their GI system will do, and you know, how much money do they want to spend and also how compliant are they? If they’re people who are working, work with WelChol, it’s like, keep them on WelChol, ’cause that will get it. If you want to add some plain charcoal, see if something else happens, fine. You know, lots of times I think plain charcoal people will get to the same place as the WelChol and cholestyramine people. You just have to do it over time and still get out of exposure and keep the GI tract moving and healing. So, I don’t have a favorite, certainly not a brand.

Eric Gordon, M.D.

Yeah, no, I mean, I love what you’re saying, ’cause once again, you’re just, you know, it’s when you, there’s a circle of thinking that’s around, okay, I have X, I need to do Y, and then you’re just stepping back and asking the most obvious question. Do we really know that X is the problem? We let you say, we know it’s the brand mold. We don’t know that it’s okra toxin or the apricot, you know? I mean, and that is, so thank you once again. I’m always impressed by people who remember to think, you know, and ask the question behind the question or behind the answer.

Mary Ackerley, MD, MD(H), ABIHM

Right, and also, if you’ve made some people constipated, they’ve ended up in the hospital, if they’re slightly demented, you don’t do that again.Always ask.

Eric Gordon, M.D.

You do learn, you do learn.

Mary Ackerley, MD, MD(H), ABIHM

Right, and if they, you know, if they have mast cells and they’re on cholestyramine, you finally figured out mast cells exist in the gut, and that’s why they’ve had diarrhea for two years, you’ve stopped doing that, you know? And if you’ve seen people spend tons of money on binders that have the best advertising and oh, I have to take this and that, it’s like fine, you know, it doesn’t look, they’re not bad, you know?

Eric Gordon, M.D.

God bless, yeah.

Mary Ackerley, MD, MD(H), ABIHM

If your insurance would pay for WelChol, we might want to try that too.

Eric Gordon, M.D.

Yeah, yeah, no, that has always been an old favorite. Well, we have to wrap up, but thank you. I mean, this has been a delight for me. I always love, I always love learning and sharing.

Mary Ackerley, MD, MD(H), ABIHM

I think I love history. It’s kind of more fun, ’cause there’s such a history with lyme and mold and chronic disease and doctors and what was thought to be and what the testing was five years ago, 10 years ago, 15 years ago, and the doctors who predominated this, that people who are still standing after all of this, treating people, those are the people I think you want to see or hear from is.

Eric Gordon, M.D.

You know, ’cause we went through, you know, we go through stuff, I call it the flavor of the month, and, but you know, I remember I didn’t want to treat lyme in the 90s because I was still under the, you know, oh my God, I’m gonna put people on antibiotics based on a clinical diagnosis? I mean, you know.

Mary Ackerley, MD, MD(H), ABIHM

I got there in about 2015 or 2016, ’cause I started doing igenixes and said, my whole mold population has relapsing fever and aphasia when we do igenix, so let’s pause this idea that, ’cause I lived in Tucson, I only had mold patients.

Eric Gordon, M.D.

Right, right. I mean, cause we, you know, I was doing a lot of chronic pain and Wayne Anderson joined my practice like 2001, and he had been doing lyme since like 1990 and his patient, his bizarre patients looked like my bizarre pain pattern patients, the ones that didn’t make any physiologic sense, and, but then it was, you know, it was lyme and then it became the aphasia, everybody, you know, and then we found Bartonella and then along the way, we’ve always had chlamydia and mycoplasma, you know, jockeying, but they never quite made the, and the point is there’s a problem, and it’s called the environment and your immune system, and what we find may or may not be your biggest problem, and that’s where it goes back to what you were saying in the beginning. It’s listening to the history and trying and seeing response and don’t stay treating what’s not helping.

Mary Ackerley, MD, MD(H), ABIHM

Right, and if someone’s not getting well do not stand on your laurels and insist, oh, well you’re not following my program, doing things right is your next step, and I think both you and I are similar in this way. It’s like, so what don’t I know that this person might have? That is really the more interesting question, and that’s what kind of keeps me interested in seeing, you know, it’s like, what didn’t I know, I certainly didn’t know about CCI or Ehlers-Danlos or mast cells or lyme, you know, it’s, you know, so, you know, what don’t I know that could help this person, and that’s why I’m sort of going back to trauma and freeze and pause. It’s like, I sorta know it, but now I see it so much with COVID. It’s like I’m back there again saying people’s like, don’t you see what the cell danger response is? Like, you have to get these things to signal. You cannot jack them into working. You actually have to get them to want to work again, because it’s a very different approach.

Eric Gordon, M.D.

Yeah, I think, ’cause I mean, just to end, I mean, my favorite thing is that what this will be learned from the story, remember the cell dangerous, it’s a story, it’s just a way to hold together.

Mary Ackerley, MD, MD(H), ABIHM

A good one, though.

Eric Gordon, M.D.

You know, I mean, like it’s not a thing.

Mary Ackerley, MD, MD(H), ABIHM

I know, but it’s a paradigm shift to realize you can’t force the body to move out of it.

Eric Gordon, M.D.

This is, right, this is your body’s response to a situation that it’s reading as dangerous, and it has this response until you can convince it that it’s safe on some level, and that’s what I love about what you’re saying is that, you know, we always think it has to be biochemical, but my God, the most powerful medicine still is love and.

Mary Ackerley, MD, MD(H), ABIHM

And safety, which is somewhat, yeah. That picture of my cat on the vibrating plate. She’s happy. She’s keeping her body shaking it off and not thinking about it, not getting treated. It’s kind of, whoa, that’s different. There’s a signaling that’s going on there that is very different than a biochemistry, so that’s the paradigm shift a lot of doctors and patients have not made and, but will eventually.

Eric Gordon, M.D.

Yeah, they will, but you know, I think it’s a dance, and you embody that dance of like, thinking, feeling and putting them together.

Mary Ackerley, MD, MD(H), ABIHM

Yeah, it is. It’s like, well, why aren’t you better instead of like, what is going on that, you know? So yeah, no, so I enjoyed talking to you, ’cause you certainly have done it, seen them and kind of kept standing and laughing.

Eric Gordon, M.D.

Yeah, well, ’cause I mean, you know, because we’re all just working at it, you know? It’s just amazing, I mean, and the patients are good enough. I mean, I, you know, my heart goes out to the people who, you know, I don’t help, because you know, there’s a bunch of them, and you know, and I see, and that’s why I keep looking, because I don’t help, we send them, they go see somebody, you know what I mean? And sometimes that person has the answer, but unfortunately, lots of times they don’t, so I have to keep looking, ’cause eventually, I keep hoping.

Mary Ackerley, MD, MD(H), ABIHM

No, but those are the most interesting patients too. It’s like, so what did get you better? That’s what I wanna know. That’s why when I first found out about mold, I’m like, what got you better? Was it the antidepressant, yeah.

Eric Gordon, M.D.

Yeah, and I like to try to follow up on people who don’t come back, because that’s where you learn the things that you are missing, you know? Like people are often sheepish, you know, they don’t want to like, disappoint, you know, the ones who aren’t angry, but many people are nervous, you know? They don’t want to tell you ’cause they liked you, you know, they don’t want to hurt your feelings, but we want to know if you found something that helped you. That’s a lot, because especially if I spent a few years working, I think I might know something about you and you did something that works, I want to know.

Mary Ackerley, MD, MD(H), ABIHM

That’s the most, absolutely. That’s the most interesting information.

Eric Gordon, M.D.

And then that’s the teaching, yeah, and that’s better than all the courses I go to.

Mary Ackerley, MD, MD(H), ABIHM

Great, totally.

Eric Gordon, M.D.

Thank you, thank you so much for your time.

Mary Ackerley, MD, MD(H), ABIHM

Yeah, and I’m glad the internet cooperated and.

Eric Gordon, M.D.

Yeah, the rain didn’t knock us out. Well, blessings and we’ll talk to you soon.