Dr. Jill interviews Dr. Kelly McCann on Tips for Mind Body Spirit in Recovering from Environmental Toxicity.
- Mold Toxicity and CIRS
- ISEAI – https://iseai.org
- Low Mold Diet Blog – https://www.jillcarnahan.com/2020/08/24/low-mold-diet/
- Is Toxic Mold Causing Your Symptoms – https://www.jillcarnahan.com/2015/02/08/toxic-mold-exposure-cause-symptoms/
- Mold is a Major Trigger of Mast Cell Activation – https://www.jillcarnahan.com/2018/03/12/mold-is-a-major-trigger-of-mast-activation-cell-syndrome/
- How to Get Rid of Mold – Definitive Guide – https://www.jillcarnahan.com/2018/06/12/your-definitive-mold-clean-up-guide/
Dr. Jill Carnahan is Your Functional Medicine Expert® dually board certified in Family Medicine for ten years and in Integrative Holistic Medicine since 2015. She is the Medical Director of Flatiron Functional Medicine, a widely sought-after practice with a broad range of clinical services including functional medical protocols, nutritional consultations, chiropractic therapy, naturopathic medicine, acupuncture, and massage therapy. As a survivor of breast cancer, Crohn’s disease, and toxic mold illness she brings a unique perspective to treating patients in the midst of complex and chronic illness. Her clinic specializes in searching for the underlying triggers that contribute to illness through cutting-edge lab testing and tailoring the intervention to specific needs.
Featured in Shape Magazine, Parade, Forbes, MindBodyGreen, First for Women, Townsend Newsletter, and The Huffington Post as well as seen on NBC News and Health segments with Joan Lunden, Dr. Jill is a media must-have. Her YouTube channel and podcast features live interviews with the healthcare world’s most respected names.
A popular inspirational speaker and prolific writer, she shares her knowledge of hope, health, and healing live on stage and through newsletters, articles, books, and social media posts! People relate to Dr. Jill’s science-backed opinions delivered with authenticity, love and humor. She is known for inspiring her audience to thrive even in the midst of difficulties.
Dr. Jill 00:12
Hey, Dr. Mary Ackerley, we are live on Facebook. I know we have a lot of our ISEAI friends watching, and we have other people. We’ll repost this on the Facebook page, and then it’ll be on my YouTube page, so I know we’ll get a lot of viewers because everybody wants to hear from you.
Dr. Jill 00:28
I want to introduce you formally, but [first], just a little bit of housekeeping: If you have questions, you can put them in the chat. I will try to keep tabs a little bit as we’re talking on those questions and answer them as we go. We’ve got lots of new and exciting things to talk about today that you may not have heard [about] yet. If you want to watch replays, you can watch them here, or I have a YouTube channel. It’s just under my name, JillCarnahan.com. All free content and interviews. And we’re going to have a lot of the ISEAI board members on those, so be sure to check back there for reruns and other videos if you’re interested.
Dr. Jill 01:04
So I first want to introduce my guest, Dr. Mary Ackerley. I just have such great respect for the hard work and effort that she’s put in. She is the co-founder and former president of ISEAI, [which stands] for International Society for Environmentally Acquired Illness, of which we’ve both been on the board. Of course, she was the former president. [She] has really, really taken on a great leadership role in this group. And today I can’t wait to talk about some of the directions we’re going, some of the new treatments, and some of the new ideas that are coming out of this group.
Dr. Jill 01:38
She’s a classically trained, board-certified psychiatrist. She graduated summa cum laude from Harvard University and studied at NIMH. She finished her residency at Johns Hopkins and was certified in psychiatry and neurology. She holds an active medical license in Arizona and Florida. She’s a gifted speaker on many different avenues and has been on the board of Certified Integrative and Holistic Medicine. As I mentioned, she was co-founder of the ISEAI and just recently retired as president. [She is] still on the board and still incredibly active. Mary, Dr. Ackerley, we are just delighted to have you here. So welcome, first of all.
Mary Ackerley 02:20
Dr. Jill 02:22
And then, second of all, I always like to start with [one’s] story, so I’m going to just be quiet and let you dive in into how you got to where you’re at, especially with interest in mold, Lyme, and some of the more complex chronic diseases that we’re seeing so much of nowadays.
Dr. Mary Ackerley 02:39
That’s a really long story, I think, and it’s a story of a journey. And some of it I’ve talked about before about how I somehow stumbled into mold beginning to treat some of Dr. Gray’s patients, who we all know is a wonderful doctor in Benson for psychiatric illness that wouldn’t get better. And I realized, “Wow, it’s not all psychosomatic” and that “mold is real.” And that began in 2010–2011, when I saw that mold is absolutely affecting their brains, and it’s real and not psychosomatic. So I’ve talked about that.
Dr. Mary Ackerley 03:16
I think my journey begins, like any healer’s, much, much earlier. And as you go and begin your own journeys, these things come, and you do find them. I think, like you, Jill, we’re both curious. The things that get me most curious in life tend to be the things I don’t know—the things I haven’t solved. So if I have people I’m seeing and I can’t get them better, I’d be very focused on: “What don’t I know?” because I really do feel like we can get most people better if we ask the right questions. So that’s an important part, I think, of my journey of just curiosity.
Dr. Mary Ackerley 03:58
But I think another part of my journey has been this part I don’t talk about that much: My father died when I was seven. It was very sudden. I was the oldest of four children—the oldest of what was going to become 26 grandchildren. I was actually the second. It’s Irish Catholic, and it’s a very big, loving family. My father died of melanoma, and he worked for two years in Korea in a metal van. He probably did the X-rays without shielding, so it’s no surprise that he developed melanoma. And in thinking about that one day, I realized, “Well, I think I had a very early interest in the environmental impact of toxins on people.” So it was a very big shock. It was sudden. He was evidently in an experimental trial. And the shock of learning this—I was really Daddy’s girl—has been with me for a long time, as have my mother’s shock and trauma. I learned hypervigilance at a very early age by learning to expect only bad news. I kind of stumbled through childhood and adolescence, trying to figure out what happened. Why did this happen? And also trying to deal with my own anxiety. I was looking for what we now call vagal balance—maybe in some of the wrong ways and some of the right ways—and learning too that there must be some way to kind of feel whole again, the way I know I used to feel and the way I knew my family was.
Dr. Mary Ackerley 05:55
So I think that brought me through a lot of journeys in college. I worked with Danny Goleman and Richie Davidson. It was a course on consciousness, and as a sophomore in college, it was the most exciting thing I’d ever heard. It’s like they were talking [about] things I wanted to know about—about God, spirit, consciousness, and how our brains worked. And this was very early; it was in the 70s. So Danny Goleman went on to write emotional IQ books and get everyone interested in emotional as well as intellectual IQ. And Richie Davidson, who is my thesis advisor, is really well-known for EEGs on monks and mindfulness. In fact, I actually studied mindfulness. In 1976, I was in one of the first mindfulness retreats.
Dr. Mary Ackerley 06:47
I can’t say I fully appreciated where it would go. But I’ve been doing mind-body balance forever, not understanding the words but just knowing that it wasn’t normal to always go like this whenever you drove a car or the bell rang unexpectedly. Fast forward to medical school and residency. Getting board certified—the journey has been spiritual for me. I have done a lot of spiritual teachings in Tibet, and they were pretty special and have come back.
Dr. Mary Ackerley 07:27
And then my own illnesses, not surprisingly… When you look back with autoimmunity and thyroid [disease], feeling tired and depressed, people are sometimes surprised and say: “You don’t have mold. Why are you interested in treating it?” It is because I just saw that it was real. As I look back on my residency, I was kind of tired and depressed, but I was living in a hundred-year-old home that we were renovating at the same time. It had a basement—four stories. There was dust all over. I found out later that I probably had high lead from that renovation. It is very reasonable to think I was living in mold for a few years, and that was part of my being tired and feeling depressed. I grew up at a time when there weren’t manuals for [things] like: How do you tell your daughter her father just died? There were manuals like: “You’re depressed in residency; suck it up and get through,” not “Go look at your basement and do a dust test and send off a sample.” [laughter] This was not the approach.
Dr. Jill 08:33
No, that wasn’t talked about.
Dr. Mary Ackerley 08:35
And I think you’ve gone through that too. What we now take for common was not even thought of at this time yet. You’re experiencing things that you’re trying to fix. So there have certainly been attempts, and that’s how I learned from Hashimoto’s lots of stuff about diet, gluten, functional medicine, and homeopathy. I wanted to talk about something, really, my story, which I find interesting. Last year or so, I started something called vision therapy. My eyes are really bad, and I just assumed: “You have bad eyesight. It’s what you’re born with. You have bad eyesight, and it goes with big hands and big feet and marfanoid and stuff.” I just assumed that’s who I am. My progressives weren’t working, and some of my patients have done really well in vision therapy with Amy Thomas, who is a member of ISEAI. If she’s listening, I give her a big shout-out. And they healed in ways I didn’t understand. Their anxiety was getting better with the new glasses.
Dr. Mary Ackerley 09:43
So that really interested me. But mostly, I was hoping my glasses would work better. And I went to see her, and she does some very unusual testing. She explains it as basically having a visual map of the world in our brain and an auditory map of the world, and they’re supposed to line up. And when they line up, your eyes work together, and both eyes are sending the same image to the brain, and everything’s fine. And then, not surprisingly, in my case, she found… And she has you close your eyes, and she rings little bells, and you’re touching… Anyone’s going to laugh because it is so weird. But you can just hear something, you can’t touch it, and you know it’s real. And then she puts on glasses, and all of a sudden, with your eyes closed and hearing it, you can touch it. But the glasses… And my eyes are closed.
Dr. Mary Ackerley 10:35
It’s this whole idea of mapping and things working together. She said, “Whatever is there, there’s some sort of trauma there.” And I got the glasses, and I was on the way home wearing them, and all of a sudden the whole trauma came, and I remembered the story of, of course, my father’s casket and the death. And it was just vivid. And then I remembered that I was diagnosed as being really myopic after my father’s death.
Dr. Mary Ackerley 11:09
I want to put this in perspective, not to shock people or whatever, but it was really a pretty bad year. It was two months before my father died. Kennedy had been assassinated, and I got off a bus, and my mother and all the mothers were in a bus stop looking really scared, looking around for something that was going to happen, hustling us home, and kind of telling us Kennedy had been shot. There was no drone following Kennedy. Nobody knew what had happened. It was just incredibly frightening. Then, two months later, my own father died very suddenly. And then, a couple of months later, my second-grade teacher evidently went home from school and hung herself. So it was a significantly worse year for me than 2020 was, to be honest. Anyone who’s been through this [knows that] it was traumatic. And it was a great shock to my nervous system.
Dr. Mary Ackerley 12:04
I remember the school nurse called after all this happened and said: “Your daughter’s black and blue”—we didn’t talk about abuse or something in these days—”and she’s kind of stumbling around and falling off things. You should get her eyes checked.” My mother was another one of those calls. Something’s wrong. With great anxiety, I was taken to the doctor, who found I needed glasses, and they were like Coke bottles. But when all this happened—with vision therapy, you wear glasses, you go to the doctor, and you fix it—I realized my eyes weren’t working. And she has one pair of glasses, and all of a sudden this whole trauma, the whole memories are coming back. I had some enormous trauma to my nervous system because I was not nearsighted before all this happened. And to realize that you’ve affected your brain like this by trauma and that you can actually start to work with it has been very profound for me—to realize: “Me? I had that much trauma?”
Dr. Jill 13:08
Dr. Ackerley, I love that you’re saying this because just recently I’ve done some work with brain integration therapists, which is kind of in this strange realm of not allopathic medicine. She recommended the exact same thing. And I have an appointment in Chicago with another expert who did the exact same thing in January, and I’m going to have the exact same experience as what you’re talking about. And I know intuitively that it’s going to help. I didn’t understand. I didn’t know your story. And I’m so glad. What you just shared is beyond profound because we’re going to have people listening and realizing these things that happened to us in childhood. We’re tough; we kind of push them off, but they affect the lifelong trajectory of our career, our passion for life, and our illnesses. And I love that you’re bringing that to our attention and sharing your heart. Like you said, this year pales in comparison to that year for you.
Dr. Mary Ackerley 14:00
It doesn’t register, really. But people ask: “How can you treat mold? You didn’t have mold.” And what I say is, “I’ve had illness.”
Dr. Jill 14:10
Yes. And honestly, I love that you’re talking about that because it’s trauma. Mold is trauma in another way—the same thing.
Dr. Mary Ackerley 14:18
It is. And that is one of the things we’ll talk about because it is a trauma, and I do have suggestions. I’ve been through about four different lenses, and I think I may have to get another one. But I think during lockdown in May, I had just gotten another pair. And again, I’m having this strange feeling of warmth right here between my eyes and stuff. And all of a sudden, with these glasses, I just had this memory of telling my father: “There’s something wrong. See a doctor.” I was six [years old]. He’s laughing at me, saying, “Oh, don’t worry. There’s nothing wrong, dear. I’m fine. It’s totally well.” I knew there was something wrong. And the experience of being laughed at and not taken seriously had just really shut me down in sort of my own intuition in that area. And it certainly has been coming much more forward since I recognized it. So I wanted to say: Yes, do the vision therapy.
Dr. Jill 15:24
I love what you’re saying here. I literally wrote an article recently about physicians and training and how it’s so brutal. We almost have to shut down that part of our intuitive, sensitive selves. You know how it is—the work hours, the abuse that happens. It is literally an abusive situation. I think it’s gotten better since we trained. And I blocked out some of those memories. But all that to say, we love science. You and I, ISEAI, the group that we’re in, we are all… And we’ve got some exciting news to share about science and research. So I am a scientist first. But the truth is, we are also intuitive spiritual souls on a journey. And when I’ve tapped into that part of myself, I get profound insight and wisdom from my patients and direction for my life, just like you’re saying.
Dr. Jill 16:10
But we were told and taught from a very early age that that’s not valuable, that’s not okay, and that’s not legitimate. We were made ashamed of that part of ourselves. And what’s happening is that you and I and many other doctors are starting to rise up and say: “No, guess what? This intuition that we have guides us, and we use great science too.” We’re not saying one is better than the other. But I find that as I embrace that intuitive side, I get these brilliant insights that only come from that place. And the same with you.
Dr. Mary Ackerley 16:41
Completely, completely. The intuition never got fully shut off. But I’ve since managed to shut off both my normal and psychic eyesight pretty effectively at an early age. The thing is that the intuition for me has always kind of been there, but I feel my life is… I use the word stumbling. I’m stumbling through. There’s an intuition that guides me.
Dr. Mary Ackerley 17:10
And it’s something that I tell patients: We’re going to talk about the science and getting people better. But it’s bad. Last week, I had, like, three people discover—who are old timers—another leak. The first one is really bad, but in the second or third, it starts to really pile up, and [there are] lots of stresses we talk about.
Dr. Mary Ackerley 17:36
And someone said to me, “I can’t do this.” She had at least decided to go to therapy. And I said: “That’s really, really good because I’ve found in my own life and the lives of people that I watch go through these journeys that if you can just find some way to listen, there’s always a small voice that is guiding you to better health, is looking out for you in some ways, and has an idea of why this is an experience that you’re learning something here that you need to learn.” And she was very open. I don’t say it to everyone, but she was someone who was open and just started crying, like: “The possessions—it’s so heartbreaking to give away my children’s toys at Christmas and stuff.” And she said, “But I know we are not material things.” I said: “Yes, I’ve said that to a lot of people. I don’t remember any religion ever saying that you take your Christmas tree with you. And if it’s something you’re learning, experiencing, and can let go of, that’s a profound gift.”
Dr. Mary Ackerley 18:54
But that is the gift, I think, that you or I are people who are letting ourselves say: “Yes, we have intuition; we have psychic gifts. How do you think mold is important? Or keep going, because of the research? No, the research isn’t there.” And I’ll tell you that. It’s because we have actually felt and seen that this is important. This one is common and real. It’s really getting a lot of people—and probably got me, and I know, Jill, you said it did get you—and it really knocks you because you’re not looking for mold when you’re depressed and tired. So that is one of the gifts, I think, that when you ask, “How do people get through this?” and only we can show this, there’s a little bit more than we think we know that goes on. And if you can just kind of listen to the part that’s guiding you, working with you, and hoping you see a more spiritual approach, you’re going to make it. You’ll make it through this, and you’ll be in better shape.
Dr. Jill 19:54
Exactly. And you’ll learn some important lessons. Well, let’s talk a little. ISEAI, you’ve been, like I said, the co-founder. Since the very beginning, you’ve been president. You’ve really shaped this great organization that’s now starting to shift and change. I want to talk a little bit about what’s happening—the exciting Giving Tuesday. Share a little bit about what’s happening and the research that you do.
Dr. Mary Ackerley 20:15
We’ve said a couple of times that yes, intuition is important, but so is science. And I’ve shifted to [being] chairman of the research department, which is something I really wanted to do. At first, my thought would be more the grandiose brain. You know, I love the neuroquantum brain, and that’s been my interest for a long time. And there have been some started along those lines. But a couple of weeks ago—really, it’s been very fast—we were having yet another long discussion on our forum about urinary mycotoxin testing and protocols for it, what it meant, how you would use these results, and then which one was the best one.
Dr. Mary Ackerley 20:58
And I just looked at it, and I thought in a freer position because I’m not doing all the president duties, and I just thought: “I’m so tired of everyone guessing at this. And listening—we have to listen to how people feel about these things. I just would like to know myself personally—are any of these tests reliable? Has anyone done split samples of any of these tests?”—which is totally common in medicine; you have to be reliable. And I have no idea, if we send off split samples, whether they’re reliable at a very basic level. And I started thinking: “What do I want to know?”—on what I call a consumer report approach, just sort of an independent verification. By the way, we are in a professional society. We are a nonprofit, and we are in the best position to independently assess a test. I’ve never seen more controversy over a test by various parties involved. Pretty nasty things were said and done. It’s like: Wow, in the absence of data and information, there’s a lot of emotion.
Dr. Jill 22:09
And, Mary, just to clarify really quickly for you listeners, especially if you’re laypersons, the bottom line here is that we rely on tests in our clinical practice and base our decisions on results. So if our assumption that a test is valid is not valid, it changes everything. So I just want to frame that and then let you talk about it because it really matters. And we’ve had labs before where all of a sudden we found out they were totally bogus, and it changes everything. And it’s really difficult to tell the patient, “This lab said they were legit, and there’s something that came out that it’s not legit.” So back to you, but I just wanted to share that the results that we rely on do make a difference in our practice, and we’re talking about a test that is controversial, even though we think that they’re legit.
Dr. Mary Ackerley 22:55
It looks so legitimate. It looks so real, and we base so many assumptions on it: “Well, if you show this, then this has happened, and this is in your environment.” And then you’re hearing now, “This is the binder you should use.” It’s assumptions on assumptions. And I am, despite my intuition, very practical. I know that it’s very murky at the bottom.
Dr. Mary Ackerley 23:17
So the test that we’ve devised… And we’re working with the University of Arizona School of Public Health there and have been working with them for a year with the NeuroQuants to devise a well-designed study that essentially is just going to send off what we call split samples from all the major labs. And we’re going to be doing more. We’re going to be sending off essentially the same urine sample to all the different labs from our subjects, meaning it’ll probably be Great Plains, RealTime, maybe [inaudible] labs—we have the money—and the Vibrant one too. And we’re going to, with the same people, show what the results are.
Dr. Mary Ackerley 24:02
To me, that’s another really important part of what I’m proposing: Really open and transparent research. All the data will be available. When we get it, we’ll make correlations ourselves and make it available as graphs. But we want to make it available to everybody because one of the things that’s bugged me for a long time is that you hear studies referred to all the time: “This is clinically shown to do this” or “In my study, I found this” and “this is true.” When you actually go looking for the data, you may never find it. Or evidently, it exists, but you’re not going to be given it, or somebody did it. There are just all these reasons you don’t get to see the data, and that’s not great research. So we want it to be open. We want it to be transparent, and that’s really important. What ISEAI is really about is just transparency—not pretending we know more than we know and trying to get people to think critically.
Dr. Mary Ackerley 24:59
So essentially, we’re going to have five or six subjects, not necessarily ill but mostly reliable, who will follow whatever protocol our membership votes on. If they want to provoke with glutathione and sauna, that’s what we’re going to do. We’re going to vote on what’s the most popular and most common. And we’re also just going to add the diet piece because that is always why they’re… “Well, it was food.” Well, how much food? Or how long did it stay?” So there’ll be the food component. Everyone’s going to do exactly the same, but we’re going to add at the same time for all these people that we’re going to collect dust samples correctly with the garbage bags for 30 days and send those off to the two labs that do it. At the same time we’re sending off the urine, we send off the dust samples, and we get those back and check.
Dr. Mary Ackerley 25:53
Do these labs even agree? We really think these must be cleaned. It’s dust, right? Check those, and then see: Is there any agreement at all between what’s in their environment and what’s coming out in their urine? And that’s the study. It’s a pretty simple one. It’s really an observational study. And we just want to do it cleanly and correctly, be open and transparent, and let people see for themselves: Are these things really reliable? Should we make all these conclusions? Is there only one that works here? Is it totally random? [We want] to just give some factual basis for an area in which we kind of freely spend our patients money all the time.
Dr. Jill 26:34
I just want to shout out that if you’re a listener or a practitioner and you want to know more, you can donate. I, as a board member, donated just because I believe in this. So you can go to ISEAI.org. And I’m assuming you can donate right from the website, right, Mary? Is that correct?
Dr. Mary Ackerley 26:49
Yes, you can. And I want to say, though, that I was overwhelmed by the response. What we’ve described is what I’d like ISEAI to be—just transparent, open, and giving information the best we can. Last year we collected $450, which we’re excited about. This year, we’ve actually collected so far—and donations are still coming in—$27,400. It’s like, ISEAI is here. The need for this kind of information about the environment is overwhelming. What we were once saying in small corners, “Yes, I think you might have mold,” was kind of a woo-woo thing—
Dr. Jill 27:39
I know. Now we’re like, “No, this is… ” And I see so many colleagues now jumping on the train and talking about it. And then they’ll reference you or me. When you’re [among] the first few talking about it, you risk sounding pretty crazy, but it’s valid and what’s happening. I don’t know if you’ve seen this, but I’m sure you have: Now that people are sequestered in their homes, there are epidemics. I don’t know if it’s just the isolation and the stress as well, but I’m seeing more and more and more cases—even more than last year; it’s just becoming bigger.
Dr. Mary Ackerley 28:13
I’m seeing it both ways. For some people, it’s been really, really nice. It’s been a COVID blessing in that their homes were clean, and they had made them clean. And the problem was work, and they’re getting so much better in a clean environment where they have the time to devote. So I want to point out that I have a number of patients—this has been a complete gift—able to live in their homes. Others who have been on the fence—because we both know that the idea that your home is going to require a ton of money for something that you’re not sure is real is not really popular—are now forced to spend much more time in it. And [for those] who are getting sicker and sicker, it’s not the way anyone really wants to learn about this. But it’s become very clear that it was real. So yes, I have seen it both ways. And a shout out to everybody, just realizing that the people who got better [said], “My clean environment has been so important.” Unfortunately, for the people who got worse, there’s really a problem.
Dr. Jill 29:17
[inaudible] to do more. Well, that’s one of the things I wanted to talk about: Some of the new cutting-edge things that you’ve really read up on and shared with all of us. So I want to talk about VIP, and then we will dive into cranial cervical instability, which you definitely, really, really understand, probably more than most clinicians.
Dr. Jill 29:39
Let’s talk first about VIP. So this is way back in the Shoemaker days, when we all learned about VIP and its value. I’m just going to say that my clinical experience has been mixed. When it works, it works, but it doesn’t always work. I would love to hear everything you have to say about VIP. And then I definitely want to talk about—we both saw this recent study, [and] you’ve been following it longer than me—[how] there’s drug status from Israel on a VIP that is being used for COVID. So let’s talk about that, Dr. Ackerley.
Dr. Mary Ackerley 30:07
Right. I’ve been using VIP since, I think, 2013. I’ve actually had pretty good experiences with a lot of people, and I’m going to say that if you choose them correctly… First of all, the lung issue is very real. And VIP has been known to help with that since the ’70s, where when you relax the smooth muscle in the lung, people can take deeper breaths. POTS-like blood pressure will go down, but mostly more oxygen is going to get through the lungs and into the brain, and it’s very noticeable. I’ve used it for a long time to help people who we think they’ve had subclinical pulmonary fibrosis or, unfortunately, clinical pulmonary fibrosis.
Dr. Mary Ackerley 30:51
I’ve had one person waiting for a lung transplant and a couple more with very severe fibrosis who’ve all been helped tremendously by VIP. The cognitive part can be a little more iffy. What I found are two things, one of which someone who I was talking to today who’s been a long-term patient said: “When I took it, it’s like a window opened up and suddenly my brain was working again. I could feel and see everything that had gone on. But then, you remember, I really got pretty rageful. I sort of hit the wall, which was surprising, and I had this kind of weird gut issue that nobody could quite figure out. So I stopped it.” I said, “Yes, let’s get you back on because I think I know some of it now.”
Dr. Mary Ackerley 31:35
So I was the person who, despite it always being said there were no side effects, would say: “I certainly have a population of people who get suicidal, irritated, dizzy, and nauseous with it with even one or two dosages.” It was right around that time that I started finding out, in 2016, about mast cells and VIP. And it was very clear that VIP could make mast cells [inaudible] worse. And the people who were getting worse tended to be mast cell, Ehlers-Danlos, hypermobility, or POTS patients. There’s a whole group of people who—
Dr. Jill 32:09
My experience years ago was more histamine. Again, years ago, when I was still very reactive, my experience was that I had more histamine issues with it. And I bet now that if I tried it, it wouldn’t be the same. But thanks for clarifying, because there is someone just asking in the chat: “Are there any side effects?” And just like anything, there are two edges, even though it has great potential.
Dr. Mary Ackerley 32:32
So I told this woman: “Oh, yes, I used to talk about this—sensitive people. And I haven’t seen these issues in a long time.” Why? Because I’m treating mast cells much faster and putting people on ketotifen, NeuroProtek, or recognizing diets—all the things we do for mast cells for histamine issues—when we do VIP, they’re not having this. And I think in my mind, I’ve proved it; it was a histamine issue, mostly in the brain. And I wouldn’t put people who have mast cell issues on it until they’re feeling stable, in which case they tend to benefit the most because of the POTS-like dysautonomia issues. It can tremendously help. So I wouldn’t be afraid of it.
Dr. Mary Ackerley 33:13
I would just be working with somebody who doesn’t go, “Oh my God!” because it’s not an “Oh my God!” situation at all. It usually stops within an hour or two, especially if you know it could happen. And you can basically pretreat. And I have followed it because I’ve had so many people on it through the FDA suddenly deciding they didn’t have enough data to work with it. And it’s very insulting. So one of the reasons I can get cynical is that I have a patient who’s waiting for a lung transplant—[after] three years [of being] off of VIP—and went to the White House. She really made a fuss, as did the petitions and everything else. The FDA didn’t care about what all these thousands of patients with mold said. The same thing.
Dr. Mary Ackerley 34:04
But an Israeli drug company—and I think we recognize them as being very smart—[inaudible] VIP started using it right away for COVID, which was a smarter response, I think; IV. And they were getting people off the respirators right away with it. So they got VIP fast track in about March. I call it another COVID blessing, where all of a sudden VIP went from almost the do not compound list, where I had stopped recommending it because we always knew it was going to be taken off too. Fast track, like overnight, it’s the same drug. And that’s not rational. That’s drug money. And it’s very insulting to all Americans who poured their hearts out on all the research, which wasn’t quite perfect. I’ll get off my soapbox, but it makes me angry that it happened. So I’ve kept the number of people on it through this knowing the research was going on. The [inaudible] research just came out. It is still quite available as VIP. What’s being studied is a synthetic compound, which, of course, you can do and make money off of. You can’t make money off [inaudible] hormones.
Dr. Jill 35:14
Exactly. So just to clarify, because we have a few people asking questions, you mentioned pretreatment. I’m assuming NeuroProtek, quercetin, or ketotifen. You would either get them stabilized or pretreat [them] before you [inaudible].
Dr. Mary Ackerley 35:24
H1, H2, yes. And they’re the people who probably have to be out of mold. It’s always said that if you’re in mold, you can’t do it. It’s not really true. And the whole thing about MARCoNS, “If you still have MARCoNS, you can’t do it,” well, we’ll be waiting forever for some people for that.
Dr. Jill 35:41
Right. And like you said, it’s kind of just the criteria that kept the people who had the mast cell activation, which makes perfect sense. Now, I have not seen lipase or amylase be a big issue either, which was originally the thing we were told. Do you check pancreatic enzymes?
Dr. Mary Ackerley 35:56
Yes, I do. I’m not going to miss it. And mostly, I think every time I’ve caught it before we went on it, it’s been a diet issue, an alcohol issue, or usually a cleaning issue. I’ve never had to do some sort of workup for cancer or anything. So that’s the VIP story, but it’s a big one. It is available. And for mold patients, I’m sorry it’s gone through more drama than almost urinary mycotoxins. And I sometimes wonder: “Where did I find myself in this land where crazy things”—crazy in a rational sense—”happen to treatments?”
Dr. Jill 36:34
We’ve got about 15 minutes left, and I definitely want to talk about cranial cervical instability. I’ve had a few patients. You are definitely more of an expert in this than I am or probably anyone else on the ISEAI group. But let’s talk a little bit about: What is it? What do you see with that? How would you treat it? How would you recognize it? Let’s dive a little bit into that issue.
Dr. Mary Ackerley 36:55
Yes. And again, that’s kind of when you say, “Why are you interested?” It’s like: “Well, that’s really interesting, isn’t it? Have you thought about that before?” I think I’ve always been interested in hypermobility, and it came from the early VIP days. I definitely had the most patients of the group of Shoemaker, I was working closely with Shoemaker. I had the most patients by far who were “having bad reactions.”
Dr. Mary Ackerley 37:23
I could not get away with saying my patients didn’t have side effects. And why was that? For whatever reason, and I think it’s because I’m a psychiatrist, perhaps because from my own history of trauma, I’m okay with people not being totally rational. It’s not something that floors me at all. People would be attracted, and that’s why they’ve been coming from Michael Gray and would continue to come as they figured I was sympathetic, which I am. So the people that tend to have more of what we’re going to call in the neuropsychiatric realm were also going to have hypervigilance from their own Ehlers-Danlos soft collagen issues. And you begin to see, as I did in others, how often that’s connected to mast cells, to POTS, and to dysautonomia—how incredibly common dysautonomia is when you start to recognize it. So I’ve been following that for a long time.
Dr. Mary Ackerley 38:21
I’ve had a couple of patients before it was known who did get cervical instability operations. You basically get steel put back here. And I wasn’t incredibly impressed with the results. It’s a very scary thing to have a big piece of metal put there. Essentially, if you don’t understand, our brain and our skull end right on top of our cervical spinal cord, but our brain stem runs right through. And that’s what carries the messages—our brain stem—from the brain to the rest of the body.
Dr. Mary Ackerley 38:58
And that’s where the vagal nerve is, which we all talk about, but that’s only one of 12 cranial nerves. And they all have to do with survival, [such as] breathing—things you don’t think about—and sweating. [These are] very affected in dysautonomias. And all of us think about mitochondria; nobody’s thinking, “Hey, there’s a structural issue here too.” It’s really a very narrow passageway here that’s coming from the brain to the spinal cord.
Dr. Mary Ackerley 39:26
And you have a lot of impingement, if I could show you, of the spinal cord—the little [inaudible] sticking out. You have blood vessels running, you have the vagal nerve coming out, and you have a bunch of other cranial nerves. And a lot of people, not just people with EDS but people who’ve had whiplash, have a tendency to get a displacement of what we call C1 and C2, which are supposed to be really nice and straight. They tend to slide, and they slide into the nerves and into the blood supply.
Dr. Mary Ackerley 39:59
So, as a doctor, who is thinking about that? We don’t think like that, and I think we should. But I think I saw a couple of videos of people with dystonia who are pretty normal-looking, like you or me. Then they’re asked to just turn their heads, and their blood flow is being measured. And as they turn their heads, you stop hearing the sound of the blood flowing—it’s getting fainter and fainter—and then all of a sudden they start their shaking, and the dystonia is like this. And then they’re asked to put their heads up, and it stops.
Dr. Mary Ackerley 40:35
And it really pulls one off for me because the first thing was: “Of course. Of course that would happen!” And then I thought, “I’ve seen this a number of times.” It’s a pseudoseizure. It ends up in a psychiatric basket. There’s nothing known in neurology that goes like that and then stops like that just by turning the head, although if they thought [about it], they would realize it.
Dr. Mary Ackerley 40:59
That is the essence of what CCI is. It’s a weakness in some ways in the human body [because] of this junction here between the brain, the brain stem, and the spinal cord. A lot of, like, data wires are being transported here through a narrow area, and a lot can go wrong with the neck. And mold seems to contribute to ligament laxity. Trauma certainly contributes to it. With Ehler’s-Danlos, people are born with softer collagen. It’s being more recognized. And I’ve been trying to teach people, like on the ISEAI list, not to call functional neurological stuff basically the new word for psychosomatic. Neurologists know that they’re not supposed to call people histrionic, meaning just all in the brain. So they call them functional, and they treat them kindly. And people get better, and it doesn’t seem as bad as saying it’s all histrionic. But you have to remember that MS was considered histrionic for many, many years.
Dr. Jill 42:07
The psych stuff that you have dealt with as a psychiatrist, now that we know mold and the effect on the brain, and chemicals, mold, environmental toxins, how much of this is really… I don’t know that there’s any true depression without some trigger to brain inflammation and dysfunction of neurotransmitters.
Dr. Mary Ackerley 42:25
I think that a couple of other psychiatrists who work the way I do have the same impression. The more you do this, the more you test, and the more you work with patients, [the more] you wonder what is true psychiatrics anymore. I watch NeuroQuants; they’re so inflamed, or we see the atrophies. You see how common Lyme and infections are and how they cause psychiatric illnesses, and you really wonder: Is there a “true psychiatric illness”?
Dr. Jill 42:55
I have a story about that. We have a colleague we both know—I won’t mention any names—who lived in a home with massive mold. She and her daughter got sick and came to me to get better. Later, they found out that in that home that had Stachybotrys—there were two parts, a newer part and an older part—there had been two homicides and a suicide separately in that home. And they wondered like I did—we don’t know, but we were thinking—there has to be some correlation between this behavior and the mold in that house. Now, certainly, they could have been predisposed, but that many in that type of framework… And they found this later, this history of this older home.
Dr. Jill 43:31
And then we think about our government buildings, our prisons, and our schools, and how many of these flat roofs are affected by mold. And you think about some of society. Again, I think about prisons, especially because they already have hits against them from trauma and difficult childhoods. I have a lot of compassion because they’re probably in moldy buildings too.
Dr. Mary Ackerley 43:51
Actually, I have a few prisoners who I’ve treated as paranoid “schizophrenics,” who turned out to be mold and are now maintained really nicely. I wrote “Brain on Fire” in like 2014. And probably twice a year, some mother calls about their kid being hauled off for some sort of murder, a really violent crime, and says there was mold involved. That would be on my more advanced research list. With the NeuroQuants, the inflammation, I see that when I say there’s limbic dysregulation, that’s a nice word for sort of the nervous Nellie and “things are bad all the time” to feeling rage—real rage. And rage can be homicidal. Certainly, we see it in marriages and people interacting. So that’s there. It’s real, and the fact that you can quiet it down by quieting down inflammation is definitely another treatment approach. I mean, my vision has always been that I’d like other psychiatrists to just know this is common knowledge and stop getting people on five psychiatric medications before the age of 20, treating something that should have been fixing the roof in the bedroom.
Dr. Jill 45:07
Right, at least looking at the option, right? You and I use medication, and we use psychiatric medications; there’s no problem there. But we have to educate our colleagues to look for the root cause because sometimes it’s not a medication deficiency. Actually, most of the time, right? Well, we just have a few minutes.
Dr. Mary Ackerley 45:25
No, and they’re like, “That medicine made them worse.” It’s like a paradoxical effect. It’s like a hallmark of neuroinflammation. It went down the wrong pathway because of the massive inflammation. And we can explain it to you. So, that is eventually where I think I’d like to be going with ISEAI. And I probably do have some good news to announce here that is a little bit new, but ISEAI, it’s kind of obvious this year we arrived. I’m taking some pride here, and all of us on the board should have a nice Christmas party here. This is so far from where we started, and it is so heartwarming to know that our vision has been shared by so many people now.
Dr. Mary Ackerley 46:11
I think we are already working with the School of Public Health at the University of Arizona, and that’s who’s been working with the NeuroQuants. We have one of the professors there who is also a member of ISEAI and who’s going to be supervising what we do here. I’ve been told recently that there is probably a big donor or push to put a full center for environmental illness at the University of Arizona, which would be a center of excellence. So, ISEAI, as a nonprofit, would be working very closely there to really train professionals, including psychiatrists and neurologists. And that would just give me a real twinkle in my eye here, like, “Yes, we can just kind of get people… “
Dr. Mary Ackerley 47:01
And it’s not just mold. It is, really, the metal band with no shielding and X-rays. It is the fire and the smoke. You and I were both affected by smoke this summer. And smoke and how much that affects the brain, all the toxins, and the superfund sites—it’s just so overwhelmingly enormous how we expect people to be normal and function when their bodies, their DNA, and their brains have been so affected by toxins without them knowing. Nobody ever really knows that they’re being hit by a toxin, which is why you don’t even know what to do about it except, “Well, we’ll call the psychiatrist, and they’ll give us something to quiet her down.”
Dr. Jill 47:43
Oh, this is such a great discussion. We just have two or three minutes left, but what are some things on the horizon? I know we talked a little bit before we got on here about peptides. Anything else you see, like pending things that could be instrumental in our practices in changing patients’ lives, that you’re seeing coming up for us to watch and look at on the horizon?
Dr. Mary Ackerley 48:08
I think there are a lot of things. I think peptides certainly have a ton of potential, and people are using them, which is very helpful. I think BPC—we can talk about its effect on collagen—is really something to think about with ligament laxity, working to strengthen the immune system; peptides. I tend to like biohacking tools. I think methylene blue is a really, really interesting medicine that is being used by some of our colleagues to help with Alzheimer’s and is seeing improvement. Now, I think everything that we can talk about with what I call structural integration bodywork has the potential. We’ve talked about visual therapy, lymphatics, and manipulation, which is what osteopathic manipulation, craniosacral… I think you’re going to see a huge growth as people realize that feeling good is really a good thing for the body. But there was much more going on. So the fascia and how it’s affected by toxins are important.
Dr. Mary Ackerley 49:14
In some ways, almost everything we look at can probably be helpful because toxins just go everywhere in the body, like mold. And like you, I’m very interested in trying to figure out: What’s the best thing we can do?—the most efficient, the most helpful. But I have to say that in some ways, some of the most helpful things that I can do for patients and probably you are to just help them understand: Many, many people have been on this journey, and it is a journey, and people have different journeys. And there are support groups.
Dr. Mary Ackerley 49:51
Tucson has the longest-running support group. And I make jokes because the founders, who have been really faithful and have really, really helped in the beginning—there were some of my newest patients there—had a lot of what we call marital discord, which set the stage for me understanding this was totally common. Ten years later, they’re incredibly successful, running a company. I like to tell people: “This is not permanent what you’re going through.” And that’s probably the point of all of this: If you’re getting appropriate help and you can get an attitude of—more than an attitude of gratitude, but gratitude doesn’t hurt—”What am I learning? What am I doing?” and not feeling, “How horrible, how victimized am I by this happening!” You’re probably going to successfully navigate it because so many other people have. This, I think, is really the take-home here. And there are going to be many things—and many things we haven’t even talked about—that continue to really help.
Dr. Jill 50:57
We’re going to have to do part two because we just started scratching the surface. This has been fantastic. And first of all, I want to thank you for sharing your heart and your story. And that really touched me, Mary, just for what you’ve been through. And it doesn’t matter if it’s mold or not; the suffering is common to all humanity. And when we bring that vulnerability to our practice and say: “You know what? We may not have exactly what you have, but we are here to love, support, and give you hope because we’ve been there and we know what it’s like to suffer.” And you and I are on the journey too. So we’re just doing our own thing and seeking healing. So thank you.
Dr. Jill 51:31
Thank you for all your insights. Thank you for your leadership with ISEAI. It would not be where it’s at without you, and it’s only going to continue. Thank you for taking on the role of research director. I am just honored to have had this time with you. And thank you, thank you, for all that you’ve done!
Dr. Mary Ackerley 51:48
Thank you, Jill, for helping get the word out, because publicity and getting the word out to people are everything; just making it aware. Again, “Hey, there really is a group here where we’re trying to do things in a really respectful, transparent way.” We know this is real. We’re trying to give you the best information, give our clinicians the best information, and teach people to distinguish between good information, okay information that might work, and really poor information, all of which exist at the same time.
Dr. Mary Ackerley 52:29
And for that, that is a journey, and you’ve certainly been on it. You were on the board for a very long time. We are here, and this is a glorious moment to just say that I’m filled with gratitude—[not just] from me to you but to everybody listening and who will listen for having the faith in us to donate like this and to keep going. In the last meeting, someone said, “Oh, do we have the money to have our staff do this?” or something. And I just looked at them and said, “Do you realize we put out a whole conference and announced it with no money?” So really, yes, we can take this risk with donations, and here’s where our risk with donations…
Dr. Jill 53:14
Aw, I love it. Thank you.
Dr. Mary Ackerley 53:16
It was a lot more risk then. So thank you.
Dr. Jill 53:22
You’re welcome. And again, we will post links to the things we mentioned. You can find us on YouTube. And thanks again, Dr. Ackerley. I will sign off for now.
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