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In this episode, you will learn about the various contributors to PANDAS and PANS and about solutions to support kids with these challenging conditions.
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About My Guest
My guest for this episode is Dr. Jill Crista. Jill Crista, ND earned her Naturopathic Doctor Degree with Honors from the National University of Naturopathic Medicine in Portland, Oregon in 2003. In 2012, Dr. Jill completed the Physician Training Program with the International Lyme and Associated Diseases Society. She was the owner, director, and practicing member of two integrative clinics offering naturopathic medicine, integrative medicine, acupuncture, chiropractic, physical therapy, craniosacral therapy, and massage. It was there that she witnessed the efficacy and synergy of a team approach to patient care. As a peer-reviewed published author, Dr. Jill is now focusing on research, teaching, and writing, specializing in neuroinflammatory conditions such as mold sickness, brain injury, and PANDAS and PANS. She serves on the board of the Wisconsin Naturopathic Doctors Association and was President for 6 years. She also worked on the American Association of Naturopathic Physicians committee for licensure where she gained experience in seeking licensure for naturopathic doctors in Wisconsin and increasing access to naturopathic healthcare nationally. Along with Dr. Neil Nathan, Dr. Jill teaches practitioners in an ongoing mentorship with a focus on how to treat complex, chronic illnesses. She is the author of the 2018 book "Break the Mold: 5 Tools to Conquer Mold and Take Back Your Health" and the 2022 book "A Light in the Dark for PANDAS & PANS".
- What are some of the key presentations of PANDAS and PANS?
- What is the overlap of PANDAS and PANS with chronic infections and environmental toxicants?
- How much of these conditions is about the bug as compared to the loss of immune tolerance?
- How key is addressing the gut microbiome in recovering health for these kids?
- What are some tools to support the autonomic nervous system, vagus nerve, and limbic system?
- How commonly does MCAS and histamine intolerance play a role?
- Can these conditions be treated naturally or is there a place for pharmaceuticals?
- What microbes may be triggers for PANS?
- In those with chronic immune deficiency, what tools might be used to fortify the immune system?
- Does the external environment play a role?
- What diagnostic tests can be used to more fully paint the picture of PANDAS and PANS?
- What are the Core 4 in moving from darkness to light in PANDAS and PANS?
- What tools might be used to "tame the flame", "beat the bugs", "regulate immunity", and "guard the gates"?
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November 14, 2022
Transcript Disclaimer: Transcripts are intended to provide optimized access to information contained in the podcast. They are not a full replacement for the discussion. Timestamps are provided to facilitate finding portions of the conversation. Errors and omissions may be present as the transcript is not created by someone familiar with the topics being discussed. Please Contact Me with any corrections.
[00:00:01] ANNOUNCER: Welcome to BetterHealthGuy Blogcasts, empowering your better health. And now here’s Scott, your Better Health Guy.
The content of this show is for informational purposes only and is not intended to diagnose, treat or cure any illness or medical condition. Nothing in today's discussion is meant to serve as medical advice or as information to facilitate self-treatment. As always, please discuss any potential health related decisions with your own personal medical authority.
[00:00:35] SCOTT: Hello, everyone, and welcome to episode number 175 of the BetterHealthGuy Blogcasts series. Today's guest is Dr. Jill Crista. And the topic of the show is PANDAS and PANS.
Dr. Jill Crista earned her naturopathic doctor degree with honors from the National University of Naturopathic Medicine in Portland, Oregon in 2003. In 2012, Dr. Jill completed the physician training program with the International Lyme and Associated Diseases Society. She was the owner director and practicing member of two integrative clinics offering naturopathic medicine, integrative medicine, acupuncture, chiropractic, physical therapy, cranial sacral therapy, and massage. It was there that she witnessed the efficacy and synergy of a team approach to patient care.
As a peer-reviewed published author, Dr. Jill is now focusing on research, teaching, and writing specializing in neuro inflammatory conditions such as mold sickness, brain injury, and PANDAS and PANS. She serves on the board of the Wisconsin Naturopathic Doctors Association and was president for six years. She also worked on the American Association of Naturopathic Physicians Committee for licensure, where she gained experience in seeking licensure for naturopathic doctors in Wisconsin, and increasing access to naturopathic health care nationally.
Along with Dr. Neil Nathan, Dr. Jill teaches practitioners in an ongoing mentorship with a focus on how to treat complex chronic illnesses. She is the author of the 2018 book, Break the Mold: 5 Tools to Conquer Mold and Take Back Your Health and the 2022 book, A Light in the Dark for PANDAS & PANS.
And now my interview with Dr. Jill Crista.
[00:02:21] SCOTT: First, I want to say that Dr. Jill is one of the practitioners that I have the utmost respect for. She's been such a force for good in the chronic illness community, first with her work in the mold arena, and now with her work in PANDAS and PANS. She really is one of the heroes in my book.
We talked about mold in episode 91 of the podcast, if you'd like to listen to that amazing conversation. And it's just such an honor for me to have her here today. So, thanks so much for being here, Dr. Jill.
[00:02:48] DR. JILL: Honor is mine. Absolutely. Thank you so much.
[00:02:51] SCOTT: I know you have a very personal connection with both mold and to PANDAS and PANS. So, talk to our audience about the personal experience that you and your family had with these challenging conditions that led you to really diving deeper into PANDAS and PANS, and now really helping so many other people that are struggling with these conditions.
[00:03:12] DR. JILL: Yes, the mold one came later. The PANDAS and PANS came earlier. I have twins with PANS, who got it from me from a congenital Lyme, Bartonella, Babesia exposure. I had “Fibromyalgia” in air quotes for those that are listening to this and not watching. And you know, it's kind of told that everybody has aches and pains. To pull yourself up by your own bootstraps. That was the family I grew up in. You know, kind of farmers and tough people. And so, I didn't really realize that people didn't feel that bad. That’s what I felt every day.
Until I had some kids that early on had some sensory processing issues and some sleep issues. And again, it was sort of like this – I just needed to up my parenting skills. I loved my pediatrician. But when I'm talking about sleep issues, I'm like, “No, no, no. They’re waking up every 45 minutes.” And it's like there's something else going on here. And of course, now I know a lot more about neuroinflammation.
And then beautiful Dr. Charles Ray Jones diagnosed them. I know. Love, love, love. All the loves. He diagnosed them, both of my boys, with PANS. And then looks at me and says, “How's your Lyme?” I was like, “My what? I don't have Lyme disease. He said, “Well, they got this from you, lady.” That's kind of the story.
And the in between part of that story is that I was at a Lyme conference for a patient, a couple of patients, where I realized I was in Lyme country here in southern Wisconsin. I went to the ILADS conferences. And I'm sitting there and checking all the boxes for the patients, like, “Yep, okay,” and trying to figure out some things for helping them.
And as I learned more, I realized, “Well, I'm missing Lyme a lot.” And I don't really know what I'm doing. I became ILADS physician-trained. And during that training, I saw kids that looked exactly like my kids. And that's when I thought, “Oh, my goodness, I think my kids have Lyme disease.”
We are an outdoor family. There are lots of opportunities to get it. I pulled ticks off my kids all the time and didn't really think about it. Because they already had some of these sensory processing things, nothing really was the moment, which we can talk about that, the acute part of all of this.
I think they have something like PANS, but from Lyme. And then that's when I found mold was later after working with Lyme patients, and then realizing that, “Wow! A lot of the patients were getting better. But then some weren't. What was the magic sauce there?” And it turned out to be mold exposure.
And then we had mold in our own house. It duped us. Duped me. And that's what motivated writing the book. Because once I figured out it was mold, I thought, “I know exactly what to do. I know who to call. I know how to do this. And everybody needs to know this.” That's the story.
[00:06:09] SCOTT: Yeah, and it's funny, because – I mean, I've known you for years now. And I just learned some new things that I didn't know about you. So, thanks for sharing that.
Paint the picture for us around what you see in a child with PANDAS or PANS when they come into your office? What are the symptoms that may be clue you in that you say, “Ah, I think this is the area that we're looking at?” How do kids with PANDAS and PANS maybe differ from kids on the autism spectrum? And then what are some of the key presentations that would really lead you to considering this as a more primary diagnosis?
[00:06:41] DR. JILL: Well, the neuroinflammation can present very differently in each kid. How it's different than autism is they don't necessarily – Well, timing, first of all. Autism will usually show up a little earlier than a PANDAS or PANS. Mostly, it's going to show up earlier, and they tend not to have – kids with PANDAS and PANS tend not to have the distance between humans kind of feel like an autism kid does. They don't regress to wherever they're not interacting.
If anything, PANDAS and PANS parents will say, “It goes the other way.” That they go from kind of being an independent person and doing all the things that they like to do. You know, the three-year-old that's myself, you know? And then four-year-old, they're really engaged. And then, “Boom!” Something happens.
And rather than not making eye contact, a PANDAS or PANS kid is going to get more clingy and more attached, and usually to one parent, or their bedroom, or a pet, or something like that. Or they might fear the pet. They don't necessarily have that thing where they start to lose the sensory engagement in the world. They become almost hypersensitive to the world. You can see repetitive behaviors. Like, within autism, they might do repetitive type behaviors. But they're going to be less like a tic and more like just a repetition, a looping that can happen with autism.
[00:08:06] SCOTT: So, do you find that these conditions are truly always acute onset as the “A” in PANDAS and PANS might suggest? Or can there be a history of insults that leads to kind of that straw that ultimately breaks the camel's back?
[00:08:22] DR. JILL: I think that there are cases. And we need another name. We need a third. Maybe it's going to be TANS. Because in the case, like for my children, they came in with some sensory processing because they were, in utero, exposed to a neurotoxin, which was Lyme, Babesia, Bartonella.
And so, we didn't necessarily have, “Boom! The moment when they went from a perfectly normal kid to a kid with PANS.” There was definitely a weeks’ – over weeks’ time, where things really shifted and went downhill. That also tends to be consistent with PANDAS and PANS, which is teething time, a big growth spurt, a dental trip, a vaccination, an illness, flu, that kind of thing.
But I think that there does need to be one that talks about the – it could be not necessarily acute, but the fast degradation due to pre-existing Lyme disease. PANDAS and PANS – I'm calling my kids PANS because there isn't that other label right now. It's kind of an inappropriate use of it.
In PANS cases, the acute part can be a little dicier. I think we have a lot of kids who are running around with mild PANS that are kind of handling it, but they're suffering on the inside. They know that something's off. And so, they're working through their obsessions, compulsions. They've worked the tics into a behavior that just looks like they were getting up out of a desk, and they jump.
You know? I mean, it can be something where they're working that compulsion into life. And maybe they've become sort of at the obstinate or bully child in the family. And so, the family has molded around the kid’s needs. Until finally, enough things crack.
And when I work with parents, they say – I give the example in the book, because I see it a lot. Parents will high five each other that, “Oh, my gosh. Do you remember? He started lining up shoes. He was washing his hands all the time. He took three showers a day when we couldn't get him to shower before. Started organizing his closet. Keeping his room super clean.” That could have been the moment. Because then we look back and we see handwriting regression. We see home from school a lot. We see social issues. All at that same time, that was a mild moment, but it was acute.
In some kids, they're healthy enough and/or neuro flamed enough that they went into that acute moment, the moment when things change, that when it went from neuroinflammation to autoimmune. And then the behavior start getting so disruptive that they can't – that it's impacting their daily life.
[00:11:09] SCOTT: We're kind of saying the “A” may not apply. And I was going to ask this question later. But let's talk about the “P” in PANDAS and PANS. The pediatric piece. I mean, my observation is that a very similar condition happens in adults as well. So, do we think that the “P” might also be maybe not exactly always a pediatric type presentation?
[00:11:33] DR. JILL: I want to go back and make sure that I didn't make people understand. The “A” is definitely there. It just could be that the severity was so small. All of that happened at once. Lining up shoes, the showers, the hand washing, the da-da-da, the social regression, the handwriting, that was the acute moment, but it was so orderly. And it fit into all of the things, all the boxes that we as parents are trying to do.
I just want to make sure that I'm clear because that I don't want to have people say, “Well, it came on –” Like in my kids’ case, it did come on over a three to four-week period. But then it went severe. That's why I think there's that third need, which is maybe a slower onset, because the kid didn't start from healthy. And that's I think the tick-borne stuff. So, I just want to back up on that one.
“P” versus adult. I think there are lots of adults that had the minor, the very low-grade, what we would say high functioning PANS, who get into adulthood and are still struggling. And then something happens. Either they move into mold. They have an injury, a car accident, a relationship breakup, something like that, that will tip it then into the autoimmune, into more severe autoimmune. I think that the adults that I've seen that have it, we could tie it back to something pre – usually during the puberty time. And they'll carry it forward past when puberty is done.
[00:13:07] SCOTT: We've touched on this a little bit with the tick-borne piece or the vector-borne piece. But let's talk about the overlap in PANDAS and PANS with some of these other conditions with chronic infections, with environmental toxicants, with immune dysregulation.
How similar are conditions like PANDAS and PANS with mold illness, or Lyme disease, or maybe even later life neurological conditions that present? I mean, it seems to me like many of these conditions share a lot of the same underlying root causes and just present differently, largely, depending on the age and the neurological development phase of that person. Are there more similarities or more differences with these different conditions?
[00:13:49] DR. JILL: I think it's more similarities. And I think that what happens in the case of PANDAS or PANS is that it's gone to the level of inflammation, or nutrient depletion, or both, or infection burden that – And, of course, toxicant burden, then now it has shifted into autoimmune. And it's that shift where the immune system starts attacking itself at the brain level.
I do suspect that there's some gut and kidney attack as well that we will discover. But we know for sure that there are changes at the brain level on the basal ganglia that I think that these are all conditions that can lead to autoimmune encephalitis of some kind if left untreated.
[00:14:36] SCOTT: With PANDAS, we know that that's Strep-initiated or Strep-triggered. PANS can be infection-triggered, but there can be other non-infectious contributors or triggers as well. But in these conditions, how much of them are bug-driven or bug-triggered versus more the loss of immune tolerance or the loss of integration within our microbiome? And why do you think that, over time, it seems that we seem to be losing the ability to distinguish foreign bug versus our own self tissue?
[00:15:11] DR. JILL: Right. I mean, that's the thing with autoimmune. We understand pretty well that autoimmune means auto, meaning me. Immune. The immune system. The immune system is attacking yourself. And the one very important part of the immune system is to be able to distinguish between self and other.
And so, that's why we don't attack our own tissues, because we don't – that's not smart. That's not a recipe for survival. The immune system in its wisdom has a way to look at the tags on cells, and particles, and things like that and be able to say, “Oh, no, that's me. And that other thing is other,” which might be a toxicant, might be a virus, a bacteria, some kind of microbe.”
The problem becomes, the more we are poisoning our environment, the more we are poisoning what helps us determine what itself. And the key thing that helps us determine what itself is the microbes in our gut. We are more microbe than man. There are more DNA that belong to the critters in our gut than our own DNA in our cells. There are more cells. Just cell the cell count. There are more actual cells of microbes in our gut than there are cells in our body.
What determines self is highly driven by what's living inside of our gut. And now we've have all these chemicals and things we're electing to put in our environment. And then the things that hit us that we didn't plan on, such as mold, those are all very, very hard on the gut bugs, the actual microbes, which now can create a fostering of non-commensal species. Meaning the guys that aren't in our best interest and a reduction of the guys that are in our best interest. And so, we lose some.
The body's really clear about what is other. And it can still see, “Okay, this is bacteria. This is a Strep. This is Mycoplasma pneumonia. This is Coronavirus. I'm not really sure that what is self. Because I'm looking in the tube of my gut, and I'm seeing all these guys that get along with those microbes. And so, maybe I don't need to attack those guys. No. Wait. That didn't make me feel good. Maybe I need to attack all of them.” And then we get self-attack.
[00:17:40] SCOTT: Mold and mycotoxins, my mentor, Dr. Ann Corson, always said that mycotoxins are like – in terms of what they do to the lining of the gut or like throwing sparks on a silk scarf. We know from Stephanie Seneff’s work that the impact of glyphosate in terms of the shikimate pathway and how that impacts our microbiome, that there's just so many things that we're doing. It's actually amazing that any of us can function in this world that we we've created.
It sounds like gut inflammation, intestinal hyper permeability, the microbiome, leaky gut, leaky brain, all of those things are really critical and at the core of these conditions. What are then some of the things we might do to improve those? Obviously, removing mold and mycotoxin exposures, minimizing glyphosate. But are there some key tools, favorite tools for supporting the gut and the microbiome?
[00:18:32] DR. JILL: Yeah, definitely. My top four bad guys for environmental reasons that one infection can trip a kid into autoimmune PANDAS or PANS is, first of all, weed killer. So, glyphosate, mold, mycotoxins, EMFs, and mercury. And chemicals get a dishonorable mention. And I have more on the list that get a little more controversial. But these are things that we can control.
And so, not only removal of those things. So, avoidance, avoidance, avoidance. Or mitigations, when it comes to EMFs. But then, if we look at what the top two are doing, I love Dr. Corson’s description, because that's exactly it. It just makes those enterocytes, the cells that line our gut, it makes them die an early death, and they fall off. And now we have – where once was a cell, we have a potential area where we have an opening for proteins and things that shouldn't get through there.
The bugs that live in the gut don't like that. They like a beefy – They like to be supported. I mean, that's like all of us, right? We like to know that we have support around us and the things are functioning right. And so, the bug part freaks out a little bit. And they get more inflamed.
And what's so interesting is that the very part of the brain that has the inflammation and the attack is from the same cell lineage, the same gestational source cell as our gut lining. When the gut lining is upset, this area of the brain gets upset, because they are – they're sourced from the same type of tissue. They come from the same lineage.
When we have glyphosate, and we have mycotoxins, so we have both of those on board, we must do something to get those cells to pull back up again. So, we want to replace that next cell very quickly. And we want to keep tight junctions so that we don't have that leaky gut lining. And we want to make sure that we're using something that is the favorite food of those microbes, so that they can calm down. Because everybody feels better when we have a full tummy.
So, that is butyrate for me. Short-chain fatty acids. It’s been just such a wonderful, solid helper. It's a little tough to get into kids. My tip for parents is that ranch dressing is a very, very good way to hide this. I do work with pediatrics. So, I'm always trying to figure out where we can sneak things into food. So, where you're going to fail is if you try to do butyrate with something sweet, because it tastes like dirty, rotten socks, or cabbage, or – And actually, cabbage is one of the best sources of this.
If you can do nothing else, getting your kids to drink a juice in the morning, where you've juiced cabbage and added some other things that you might be able to hide it, it's a nice way to get butyrate in. But these kids are to the level where typically they're going to need butyrate in a supplemented way to get those leaky – the cells to kind of pull back together, those tight junctions to firm up.
So, butyrate is my favorite because it fosters – sometimes we don't even have to use probiotics. It fosters that environment that is pro balance. And then the body can work out the rest. I like Pure Encapsulations on butyrate. Before we ever had that, I would just have parents open it and then mix it into some kind of a fat. And usually, again, there's where ranch dressing helps to –
[00:22:08] SCOTT: That’s actually a good one. I've put that one in my smoothie before. think it's got a little bit of rosemary in it as well, or vanilla, or lemon, or something. Yeah, it's not bad. So, let's –
[00:22:18] DR. JILL: Yeah. And rosmarinic acid, you need for your PANDAS brain, PANDAS, PANS brain. So, yeah.
[00:22:24] SCOTT: So, let's talk a little more about the loss of immune tolerance then. And in the book, it leads to what you call a monkey mind or the microglial cells of the brain that really become angry. So, what irritates the monkeys? And how do we shift their morphology from this M1 pro-inflammatory type to the M2 anti-inflammatory type?
[00:22:47] DR. JILL: Yeah, so I call it monkeys because microglia, which is an immune cell in the brain that mimics our macrophages, which are in our body, this type of immune cell can move around and it does surveying for us. It's looking for garbage. That's one thing I really want people to understand, is that our immune system isn't just about bugs. It's about cleaning up things as well. It's our garbage men.
So, when you have an immune dysregulation, you also get toxin build up. And that's why when I talked about mold, lymphatic massage, and things like that, like the lymph system cannot be ignored. That is a huge important emunctory.
When we get back into the brain with these little microglia, they will literally – I think of them as swinging from neuron to neuron. Our brain has two-thirds immune cells, and only one-third the thinking part, which is amazing if you think about that. Most of our brain is immune, or the majority. And so, they're just swinging around looking for brain garbage. And they're also looking for – there's something called synaptic pruning. They're looking for – it's that old adage, use it or lose it, with your brain. Definitely play Sudoku and all of those things that keep your brain exercised, because those microglia are in there looking around for nerve tracks that aren't necessarily being used as much so that the brain – because only a third of the room in there is for thinking, it will prune off things that you're not using and then it will build other highways for things you are using.
This becomes problematic when you have limbic looping. That can come along with PANDAS and PANS. Because it will prune away the other thoughts. But those microglia, when they get irritated – and one of the best ways to irritate a brain microglia is to have a gut microglia problem or a gut immune problem. Then they will – their little arms come off and they get angry. They start doing what monkeys do. And they scream and holler.
And part of the getting angry, what that means is that it's then seeing a problem that needs to be taken care of, which might be cleaning up garbage. It might be garbage that wasn't really easy for it to eat. It has to inflame a little bit. And it might be that there's a bug. And so, it has to send out inflammatory molecules.
If another monkey goes by and gets caught in that, it will start doing it, that same thing, too. It will lose its appendage and then it starts its inflammatory cycle. The only way out of that inflammatory cycle is for the monkey to die. It's for that cell to be done. It moves into its resolution phase, which is where it is called apoptosis. And so, it will just move out of the way so it's no longer agitating other monkeys. It’s no longer creating a little pocket of inflammation. And then a new healthy, with the arms, non-inflamed microglia comes back in its place. So, that's kind of the how it's happening.
But the way to stop – the way to move it into that calming phase, that resolution phase, is to reduce inflammation in the brain. I call it tame the flame. It's not only stopping sending up those inflammatory molecules from the gut and stopping sending up systemic inflammation, meaning if there's – You can sprain your ankle, and it can set off a PANDAS flare or a PANS flare, because there's that amount of immune activity and inflammation that will make the brain get agitated.
Using things that stop the inflammation, and also that will help it move into that resolution so it can be replaced by a new cell. Those are all things like – And do you want me to talk about specific kinds of things that we do?
[00:26:38] SCOTT: Sure.
[00:26:38] DR. JILL: Okay. Yeah. You're going to hear a lot like mast cell managers. But I take it one step back and make sure that the brain has the kind of fat that it wants. Our nervous system in our brain, our nerves, are coated with fat. And that's what helps conduct a circuit all the way through and we don't have dirty electricity in our brain, so to speak. And we're not losing current. Because we have a nice fatty lining, just like you would look like at an electrical wire. We have coating over that to keep the circuit to go all the way from one – Or the action potential, the nerve signal, to get from one side to the other.
So many of us, because of this gut disruption, don't have the right fats in our brain. And so, I start with something called resolvins, or pro-resolving mediators. These are basically the most anti-inflammatory part of fish oil. And they are just getting enough fat in the brain that is specific to anti-inflammatory. Helps tell that monkey, “Okay, ssh-ssh-ssh.” You know? Like, “It's alright, you did your job. We're good.” Now you have this pillow of fat that you can float off into monkey heaven with. So, that's a big one.
Feverfew is one of my favorite plants for this as well because it has multiple mechanisms of action. And I've seen feverfew be able to stop a flare, boom! It does take a higher dose in a short amount of time than a lot of people think. But it is one of those that I have my parents keep kind of at the bedside, or at least in the kitchen for – Even at that first whisper of maybe a flare is coming, they can get on the feverfew and really pump it. And that could be a way to stop one agitated monkey. I call it monkeys flinging poo. From flinging poo on to the other monkeys. Because then they can fling poo and they can flame poo and it becomes this whole wildfire of inflammation. Feverfew is one of my favorite stoppers there.
We also talked about rosemary a little bit ago. Rosmarinic acid is a wonderful flare stopper as well. Tames the flame. These are all things that are going to be moving that in flame monkey into a quieter monkey in the mind. And then of course, you hear mast cell managers. There's vitamin C, PEA, perilla. These are all things that will help calm the mast cells, reduce the amount of mast cell degranulation.
And vitamin C is one of the best mast cell stabilizers. And so many kids are deficient in it. We actually have – especially with coronavirus, one day have a Coronavirus – this is based on studies from colds. Because colds, the common cold, is a Coronavirus. One day of having a cold eats through 23,000 milligrams of vitamin C. 23,000. And now our kids are in school. They're getting exposed to all of these things. And so, kids that aren't eating a vegetable diet, a vegetable base that has enough bioflavonoids, enough vitamin C, which isn't just oranges, oranges are actually not a great source of vitamin C, they're going to be very C deficient. And let's start with just stabilizing that mess up with the basic nutrients that we all need.
[00:29:50] SCOTT: Rosemary is also one of those things that Dr. Klinghardt talks about to help mitigate the impact of EMF exposures as well. I think it's got lots of cool things that it can do. You mentioned limbic looping. In PANS and PANDAS, talk to us about the role of calming the autonomic nervous system. The limbic system, supporting the vagus nerve, really setting the stage for the body to have the ability to shift into a healing state. And then we know a lot of tools we can use in adults, DNRS, and Gupta program, and so on. But what are some of the tools that we can use in kids to accomplish limbic system retraining as well?
[00:30:33] DR. JILL: Mm-hmm. Limbic retraining – I mean, I kind of – In kids, it gets a little bit lumped into vagal toning, limbic. Because, number one, they're a little more plastic, thankfully. And it is, like you said, like a classic limbic retraining might be a little trickier for a five or six-year-old.
However, if the parents take the training. They can use the languaging, they can use the body, posturing and things like that, that help keep the kid calm. Because so often their behaviors, because of the neuroinflammation, it creates neuro psych problems. And this is the big, big, big point that I think it's creating a paradigm shift in mental health is like, “Oh, a body problem can cause behavior problems?” It's not something we can just give you psych meds, and you're better. No, we have to address the body stuff.
These behaviors can get so scary and disruptive that the parents become traumatized as well. And they come into a limbic looping pattern, because they're waiting for the next shoe to drop in between players. A simple, simple thing, and a lot of kids are self-medicating with this because they have a vocal tic, which is a hum, is nitric oxide. Just humming, “Hmm.” You're getting two things for that. When we hum, we get nitric oxide on the mucosal surface. We like it there. We don't necessarily want it in the cells. But on the mucosal surface, it creates a zone of sterility.
If that kid has a lot of sinus or throat microbial dysbiosis or biofilm, they're self-medicating when they, “Hmm-hmm-hmm-hmm.” They're doing that to get that zone of sterility. But they're also stimulating the vagus nerve. And that can be a very relaxing thing. What do what do parents do when a kid is humming? And try to get them to do something different. And that could be self-medicating for the kid.
There's great research for tic disorders that sweeping helps. With a kid using more kinesthetic things – because their thoughts are so disturbing to them. As much distraction as you can do that doesn't involve more screen. Because EMFs are a problem with these kids. They become very screen addicted. Something where not only are they contributing to the family, because they have a job to do, but that back and forth, repetitive behavior.
Whether that is – if they're more sports minded, maybe they bounce a basketball and you try to have them go from left to right to left to right. Some of these cross-kinesthetic things that can help. I like to use frequency specific microcurrent. There are parents that swear by acupressure and acupuncture, if your kids can do needles. But acupressure can work. And then just simple things like – I'm a big fan of the peloid baths, by detoxifying the body and having them have some kind of routine that helps again as much kinesthetic as you can be with a kid, rather than leaving them to their own intrusive thoughts. I think that's why we see movement disorders. And I think that's why we see them acting through their compulsions to create the order that they're looking for, through lining up shoes, or hand washing, and that kind of thing.
Movement, movement, movement. But back and forth type things that can help. And deep breathing. Kids have a hard time with deep – At least in my experience. But if you ask them to hum on that on the exhale, rather than – I mean, we try to do the counting and stuff. But sometimes that counting can add to the anxiety that they're already dealing with. And so, if you just have them hum and then you have a little game with that. Like, who can hum the longest? And then you'll see them doing – because they're getting ready to be the longer hummer between you and the parent, or them and their sibling, or something like that. And you're training them a really important breathing exercise. Some kids love alternate nostril breathing too. Because again, it's got that kinesthetic, side to side thing.
[00:34:47] SCOTT: Extending more on the inflammation, the immune dysregulation. We talked about the microglia. Is mast cell activation syndrome and histamine intolerance, is that almost universal in PANDAS and PANS where the mast cells themselves are also contributing to the inflammation, to the immune dysregulation?
You've mentioned feverfew, which can also be helpful in that realm. But what are some of the tools that are your go-tos for stabilizing the mast cells for dealing with histamine? And do you, in kids, suggest reducing dietary histamine to minimize some of that mast cell and histamine intolerance?
[00:35:25] DR. JILL: In my experience, it's not always mast cell – to the level of mast cell activation. Mast cell activation syndrome. I think the mast cells are more involved when we have mold. There are kids who don't have a really large mast cell component to their PANDAS or PANS. That can develop, because now we put them on antibiotics. And then they get a fungal infection or fungal overgrowth, and now we have some histamine issues.
Mast cells are part of the picture because they are part of what is responding to the immune insult. They're also part of what’s responding to the toxicant insult. But if the main toxicant is – Let's say they have a lot of pesticides, and they have mercury fillings, and there isn't any mold, and that's the thing that set the stage for them to develop PANDAS or PANS, they're going to need less of the antihistamine, high doses of mast cell stabilizers. Histamine-free diet, if I didn't say that already. I think that it's so individual with that.
I did put mast cell managers as part of my thing, because I use them a lot. But I'm also dealing with the fact that a lot of my patient base is coming from a mold exposure as well. Some of my favorites, I think I rattled off earlier, vitamin C, just to stabilize those darn mast cells. Quercetin and luteolin. If a child has phenol issues, you want to use those low phenols. And credit to my colleague, Dr. Darin Ingels, for helping to create some products for us to use for that.
Anything in that color band, that yellow bioflavonoid color band, which if they don't handle quercetin, or luteolin, or fisetin, or rutin, you can go the beta carotene route, the good old-fashioned beta carotene. And you can get that through topicals as well.
Also, perilla, which is handling a different interleukin than the others. We might be able to move the needle a little bit better by using something like perilla. And I really love PEA. It goes back to the fats. It goes back to – it's a lipid modulator. It's going to help the body move the lipids of the brain. If we put those pro-resolving mediators in there, fish oil in the brain, then PEA is going to help determine which confirmation of that essential fat is going to be best for the brain at that time.
I usually am using many legs of the stool. But kids get pooped out with all the supplements, you know? Thankfully, with kids, we find ways to use powders. And PEA, you can use as a powder, and it absorbs just fine. Sometimes we can get it all in one thing. We can hide some of the things. But it does – if they're really, really inflamed, we need to knock that down with any means possible, even anti-inflammatory or antihistamine pharmaceuticals. I'm a naturopathic doctor, but I'm also a doctor. And so, if the kid is really, really inflamed to the point where they won't eat, an antihistamine pharmaceutical is very, very indicated at that time.
[00:38:34] SCOTT: If we think a little bit about immune dysregulation, about Th1, Th2, Th17, Tregs cells, oftentimes in complex chronic illness, there is a Th2 dominance, more allergy, more mast cell activation. That then is a loss of Th1, which can minimize our microbial surveillance. An increase in Th17 can drive auto immunity. And so, the balance or regulation of our T helper cells and T cells is also really important here. What are some of your favorite interventions to help regain immune regulation?
[00:39:12] DR. JILL: Well, and we know that all intranasal infections of every type, not just Strep, preferentially raise Th17. That's why the nasal gate is a big emphasis for me, because that's stopping the problem.
There's a naive T cell that can either become a T regulator cell or a Th17. This depends on what kind of soup that that T cell is developing inside. If it is an infection soup in the nasal passages, that T regulator cell, that T cell that was sent to the area, that could have been one to calm down the immune system and calm down the mast cells, has now been told, “You need to become an inflammatory one.”
And I actually – I hope that we can start seeing Th17 a little bit differently. I see it as a biofilm agent, an anti-biofilm agent. When we see what Th17 does, it increases MMPs. These are things that chew up extracellular matrices. I feel like it's part of the cleanup crew, and also part of the crew saying, “We're going to digest things through inflammation, unfortunately.”
I joke in my book that Th17 will use a grenade when a butter knife would do. You know what I mean? They're very inflammatory. But I think that the message that they're trying to tell us is that there are – either there's garbage between the cells that the extracellular matrix is needing some cleanup, and/or something is trying to move in that we don't have our normal Th1, Th2 system isn't accomplishing. It gets recruited to do that job.
By reducing intranasal exposures, you can tamp that down. But once you have Th17, often, like I was saying, that's a Th2 dominant, Th1 reduction. So, innate immune system is not holding up. That's a big mold thing, by the way. Also, a big weed killer thing, because who drives that innate immune system are the microbes in our gut.
This is why I love botanical avatars, because all of them that are on my list, modulate that very part of the immune system. So, they're helping to take this grenade throwing, called-in because we're losing the fight kind of inflammatory molecule. And it's replacing it with a more orderly, try not to hurt the host while we take care of the problem immune system. Yeah. Every single one of them on my list does that, which is so cool.
[00:41:52] SCOTT: What are a couple of your favorite botanical avatars for immune regulation?
[00:41:58] DR. JILL: So, Chinese skullcap is first on the list. Scutellaria baicalensis. Scutellaria lateriflora actually has a lot of the same things, but it's not bitter. And so, I think that it's the bitter component as well. We have bitter taste receptors on our innate immune cells. So, when we taste the taste of bitter on our tongue, that actually engages that Th1 side of our immune system, which is so cool. Just by bitter.
It does all the things. The reason I call them avatars is that if I were looking at the mechanisms that we understand today about PANDAS and PANS, which is immune dysregulation to the point of autoimmunity, we have excess inflammation, excess neuroinflammation, gut disruption, structural changes in the brain. I'm trying to think of all the things that they do, do all these things.
When I sat there, and I was like, “Okay, what do I know? Or wouldn't it be amazing if we had a plant that did all of these things?” Boost the secretory IgA in the gut. All of these plants hit all those marks. When I talk about Scutellaria baicalensis, that's what I'm thinking about, is antimicrobial. It does have some antimicrobial activity, which is broad spectrum. A little higher on the bacteria than the others. It's an immune modulator. That means, while it's killing some things, it's also boosting the immune system and giving it specific nourishment to build that part of the immune system we're looking for.
It's anti-inflammatory. Anti-neuroinflammatory. It's going to be helping with neuroplasticity or neuro repair. So, those areas that have been damaged. And the part that not a lot of people are talking about, which I should have put on that list of things, perfect things. Once you get that attack in the brain, the attack is going to the dopamine-rich areas of the brain. I think that because there's part of this that likes that neurotransmitter.
What happens is that the receptors for that neurotransmitter get damaged. And we don't really know – we think it's a molecular bio mimicry. But we know that there's damage happening to the dopamine receptors and also inter cholinergic neurons. So, these are the ones that are between things.
What we're seeing is that, when that happens, the brain starts to get flooded with dopamine and with glutamate, and their acetylcholine is completely disrupted. This puts the child – that's what's causing the behaviors. That's what's causing the obsessions, compulsions, intrusive thoughts, tics. It's because their neuro chemistry, not just the attacking the inflammation, but the neuro chemistry is off.
And what I love about the botanical avatars is each one of them I chose specifically because they're going to be reducing the dopamine, or repairing the receptor, or repairing the interneuron, or have some normalizing activity on acetylcholine. So, yeah, and lots more.
[00:45:09] SCOTT: I love Scutellaria for many reasons too, but it's also helpful for mast cell and histamine-related issues too. It's kind of checks a lot of boxes. I think holy basil is another one that I think ticks a lot of boxes in different arenas maybe. Let's talk a little – I'm going to throw out a bunch of questions about the PANDAS, the Strep piece, and then just kind of let you run with it.
With PANDAS, we know that Strep is present. Where are you normally finding Strep? Is it in specific locations? Like, the throat, the tonsils, the nose, the gut? How common are re-exposures to Strep from other people or from the environment? Do we need to think about the family pets, those types of things? And then when you start thinking about how you're reducing or eliminating Strep from the body, what are some of your favorite tools? Do you think we can do this with herbs and botanical avatars? Do you think we need pharmaceuticals? Talk to us about a lot of those questions.
[00:46:07] DR. JILL: Yeah, those are just a few. Just a few of the questions. We are seeing sometimes, it depends on – If we are doing rapid Strep or cultures. I highly, highly recommend for all pediatricians everywhere to run cultures. You can run the rapid Strep, so you can catch Strep if it's there. But the Strep antibody process is much more complex than we really understand. And the rapid Strep is missing quite a bit. We do see it in the throat adenoids. I'm seeing quite a bit as perianal.
I think that there is a lot that is getting missed to the point where it's a persistent Strep infection enough that it now turns it into that autoimmune problem, because it's perianal or gut-based Strep.
Perianal absolutely needs to be treated topically and systemically. It's very persistent. Very, very, very persistent. And then re-swab with a culture, not with a rapid, to make sure that you got it. Don't just assume because you gave the treatment that you're done. Because it is – from my experience, it's the thing that is continuously reinfecting the child's tonsils. There's a lot of cross – I mean, they’re kids. You wipe a bottom, maybe didn't wash your hands well enough. Maybe it happened when you were sleeping. Because Strep on the bottom can cause a lot of irritation and itchiness, kind of like a Candida would. If they itch, and then they touch their mouth, they've just reinfected themselves.
There is a big problem with family members who are positive. I want to stop normalizing the term Strep carrier. This is a Strep weak responder. Nobody should be carrying pathogenic Strep. Strep is the Streptococcaceae family. That is the majority of our respiratory bacteria. So yes, you heard it here. There are good Strep. And they really help us. But group A Strep, that's our pathogenic Strep. And nobody should be running around with that. That means that's an immune dysregulated person. And that person is like kryptonite to a kid with PANDAS or PANS.
Strep is equally important for a kid with PANS once it's gone autoimmune, because Strep is kind of unique. Because there are so many strains. So, there are strain differences, protein differences. And then each specific strain secretes a different host of exotoxins. Becoming immune to the last step that you are exposed to does not give you immunity to the next Strep.
If you think about – I think it's like 20 different proteins, 300 different other parts of the Strep. And so, you're looking at potentially 60,000 different strains or something like that. That's a lot. That's a lot of Strep that we're not going to necessarily have immunity to.
And so, if a kid already has those microglia monkeys in the brain primed, meaning they're sitting in the tree without any limbs, being upset, flinging poo, and the gut gets a little bit of inflammation, or the – Again, an ankle injury. And so, there's more cytokines. That's going to agitate those monkeys. They're already primed to be upset and to freak out about any excess inflammation. If a kid with PANS gets a Strep infection, that can be the thing that sets up another flare.
Pets – We didn’t talk about pets, because a lot of people worry about this. And they're swabbing their dogs’ noses. Strep is a is a human pathogen. The only way a pet is a threat is if a parent, or a friend, or a sibling has a Strep skin infection, or they let them like kiss their nose or something like that and then that dog licks the child that have PANDAS or PANS. We just generally try not to have a lot of licking going on with a pet, because they can't – dogs can't get Strep. Cats can't get Strep. But they can carry through saliva, a Strep from another human.
[00:50:15] SCOTT: Can we treat Strep herbally or naturally? Or do we need pharmaceuticals?
[00:50:21] DR. JILL: Whether herbs or pharmaceuticals, that's going to depend on the child and the family's opinions too, because we want to do things that our patients are going to believe will work. Because that's medicine, you know? Belief is medicine.
Because I'm integratively trained, I've done everything from an immediate, pharmaceutical, to, “Well, let's start with a really low dose homeopathy and then see how we're doing.” I haven't seen homeopathy, even like a DesBio ramp and reduce kind of thing, I haven't seen that be strong enough to stop the autoimmune process. I have seen that herbs definitely can.
Typically, I will use – I have two categories; botanical avatars, and botanical anti-microbials. Some botanical avatars aren't as strong in the anti category that we might need for that kid. And so, we would add an antimicrobial, like an akinesia, or like a Japanese knotweed, or something like that. Or maybe we know the critter that they're fighting. Let's say we know that it's Bartonella. So, we want to make sure that there's a Cryptolepis in there or something like that.
Can herbs alone work? You betcha. Does it work for every kid? No. And do we combine herbs with drugs? Yes. And with a really sick kid? Often. Often, we will do that. And then what we do is we start pulsing the antimicrobial pharmaceutical. Check and see how they do. Flares tend to go every three months. There's kind of a pattern with this condition. Kind of hold on any change for about three months and see how things go. Try to get through a season change if they live where there's four seasons. Or try to get through the Strep season.
Because we know that strap is higher in the fall and winter, we might have more daily support during that time and then withdraw support during – not withdraw completely, but reduce support during that time. And it's really important. I want everyone to know that I have a medication compatibility chart in the book, because a lot of parents are really scared of what kind of things can you combine with these pharmaceuticals?
And so, I have a chart in there so you can look at which botanical avatar you think is fitting for your kid. If this resonates for you. And if your child also needs to be on azithromycin, or Itraconazole, or something like that, you can go on the chart and see if they get along together. They're safe to do together.
[00:52:49] SCOTT: Do you suggest avoiding probiotics with Strep strains? I've gotten lots of different answers from people on that one.
[00:52:56] DR. JILL: You know why you're getting a lot of different answers? Because it hasn't been studied yet. And until it has been studied, and we know for sure, I take the cautionary principle of it's easier to avoid it than to add it. We don't know the peptide on Strep that is causing the reaction.
Similar with mold, how in the beginning stages of treatment I have people go off anything fungal, including medicinal mushrooms. Even though I use those later for immune resilience in a mold sick patient, and I said in my book, “Don't take them because that's the therapeutic window of time.” I do the same thing with Strep and probiotics. Like, why add it if we have so many other things that could help?
[00:53:39] SCOTT: When we think about using binders to bind mycotoxins produced by molds, is there a place for binders to bind exotoxins produced by Strep and other bacteria?
[00:53:52] DR. JILL: Yes. Quite often, one of the things for regulating immunity that I like to use is colostrum. And that can – I know we want to talk about that, because that can agitate sometimes. But what it’s doing is agitating by nourishing. By giving strength to the immune system. What we see is that colostrum ends up being a very nice binder for exotoxins.
Also, Smilax Glabra, or sarsaparilla, which is a wonderful way to flavor formulas that you're trying to get into your kids. Some of the botanical avatars are very bitter, like Scutellaria baicalensis, or Chinese skullcap. You can mix that with a little Sarsaparilla and then it becomes a treat, you know? You can make and you can find Sarsaparilla syrup. And it's a nice way to add that binder as you're also doing the antimicrobial and the immune modulator.
Also, citrus pectin. But we try to do things that are feeding many birds with one seed. If the colostrum is doing immune modulation, it's feeding them the probiotics. And maybe we don't have to add in any additional strains. And it would be binding exotoxins. It’s like that's done a lot of things at once. And by the way, I should say I like to use the liposomal form of colostrum. That's the only form that I've seen reduce exotoxin load.
[00:55:13] SCOTT: Is that the one from like Sovereign Labs?
[00:55:15] DR. JILL: Mm-hmm.
[00:55:16] SCOTT: Yeah. The Colostrum LD, I think, right?
[00:55:18] DR. JILL: Yeah.
[00:55:18] SCOTT: Yeah, I like that as well. Now let's move a bit from PANDAS and Strep to PANS, where we recognize that while Strep could be a contributor, that there can be lots of other things that are triggering PAN. What other infections or environmental toxicants do you think of as more likely triggers for PANS?
[00:55:41] DR. JILL: So, for PANS, definitely my top four, which would be weed killer, on the environmental side. Weed killer, mold, mycotoxins, EMFs, mercury, chemicals. So, those on the toxin side. On the critter side, I see a lot of tick-borne – undiagnosed tick-borne problems. That could be because we don't really recognize tick-borne relapsing fever. So, Relapsing Fever Borrelia, because it doesn't test well.
I'm seeing a lot of kids are told, “It couldn't be Lyme. We ran a Western blot. It was a standard CDC lab.” That's not going to convert to positive. And I'm hoping we can get the message out, and I know you work on this a lot to, Lyme is a clinical diagnosis. Don't wait for a positive lab test.
And I think there's a lot of undiagnosed Bartonella as well. Bartonella doesn't require a tick bite. Bartonella can be from scratches from any animal. Dogs have it. It’s called cat scratch fever, which is really doing a disservice to the bug and to the awareness about it. Gerbils, hamsters, dogs, all kinds of different critters can pass Bartonella. And flea bites. I mean, if a kid has lice, they could have gotten Bartonella.
We want to expand – everyone's saying, “Well, is Bartonella just the new trendy thing?” No, it's just really highly underdiagnosed. And it's very commonly found with kids with PANS. Very, very commonly found.
Also, the encephalitis type viruses. Anything in the herpes family, that would include Epstein Barr Virus, Coxsackie. I didn't say, but I should have said in the bacteria side, Mycoplasma pneumonia, it does a lot of what Strep does. It does a lot of what would lead to an autoimmune condition, because it's very, very small. It evades detection. And it evades treatment very easily. It can be quite persistent in kids.
Parvovirus, Coronavirus. We're seeing a lot of things. And the biggest one that I see on the viral side that will kick off the first event of PANS is the flu. We hear that a lot with parents. They said they had the flu. They recovered. It was a slow recovery. Got back to school. And a month later, we started with the acute onset of the disruptive behaviors.
[00:58:09] SCOTT: A lot of times, we think when kids go back to school and may flare, I think we think, “Well, maybe they got an exposure to Strep.” And I'm sure that's true. But I also wonder, because we know that Mycoplasmas are higher in water-damaged buildings, we know that many schools are water-damaged, do you think that there's a possibility that it's not just the Strep component of going back into a school environment that then might trigger these kids again, but that it could be that they're also getting exposed to Mycoplasmas from being in a water-damaged building?
[00:58:42] DR. JILL: Yeah, Mycoplasma. The other thing about that guy is that it can take three weeks for a symptom onset. And you can be sick and spreading for another six weeks after your recovery. It's a super spreader. It’s like way more super spreader than Coronaviruses.
I do think Mycoplasma is an underrecognized and really, really common issue. I predict it's going – now that everybody's been closed up and we're just now being exposed to things again, I think a lot of us lost our immunity to mycoplasma. I think we're going to see a big bump in it, like we're seeing with RSV right now.
The other thing about getting back to school is fluorescent lighting. This is one of on my list. If we could change all the lighting in the world, we would get rid of this, because it's very agitating to a nervous system.
[00:59:37] SCOTT: In the Lyme arena, I know several practitioners suggest that Bartonella is a key trigger for PANS. I know you've mentioned it as well. You mentioned Cryptolepis as a potential herbal tool for dealing with Bartonella and even potentially Babesia and Borrelia. I mean, that it can do lots of great things. How often do you feel Bartonella is a contributor in your kids that are dealing with PANS? And then what are a few – besides Cryptolepis, what are a few of the top things you might reach for to support those that are dealing with Bartonella?
[01:00:10] DR. JILL: I think it's very, very common. I think it's – especially if their PANS presentation, PANDAS or PANS presentation, has any kind of aggression, then I definitely am ruling out Bartonella. And not always necessarily with a lab test, because there are more and more species we're discovering all the time. They may have displayed all the Bartonella type symptoms that we have. And in my book, I have the acute and the chronic. And the chronic list is like a page long because it can look so very different.
Bartonella loves collagen. That's one of its favorite munchie foods. And so, that means it can go to these various places. And it also likes the food in our brain. It tends to have that aggression rage. If I see anything like that, the turning on, the cornered animal kind of stuff, I'm starting to treat Bartonella just presumptively. And I also like Japanese knotweed, Cryptolepis and Japanese knotweed, those are often in my formulas. I might put Houttuynia or Isatis. There’s going to be more Buhner herbs. Just playing around. You know, trying to figure out what's going to move the needle for a kid.
They tend to do really well with Albizia as a botanical avatar. It's a very calming, sedating kind of botanical avatar. Don't do it before school. Although some kids with real extreme anxiety before school can handle a little bit of that Albizia. But that tends to be a nice combining – herbal combining of those two plants.
[01:01:39] SCOTT: Let's talk about some of these encephalitis type viruses. If we're looking at Herpes Simplex, or EBV, or Herpes Zoster. I think Herpes Zoster, at least an adult, I think that's a big contributor in the chronic Lyme arena that we don't think about. HHV-6. You mentioned Coxsackie as well.
And I think that the viruses and even some of the endogenous retroviruses, I think those play a larger role than most people really think about. And so, what are some of the things that you might do? And you've mentioned Skullcap. You've mentioned Echinacea. What are some of the things that you might do to support the children with PANS and PANDAS against some of these viral contributors?
[01:02:21] DR. JILL: I want to talk about herbs. But one of the most important things that I've seen is frequency-based medicines. Frequency-Specific Microcurrent, of course. See, viruses – Most of our DNA is a viral and microbial origin. They help us evolve. That's the thing they're helping us with. And why the herpes viruses are so disruptive, is that once you get them, you don't ever get rid of them. It's not like an Adenovirus, where you get it and you get over it, and you're done.
Frequency-based, and that could be lots of different ways. That could be a Biomat. That could be, again, microcurrent. That could be acupressure. That can be a Rife machine. Those are the things that I personally have seen move the needle the most when it comes to chronic and what I might say stuck viruses, because they're intracellular. They're inside of the cell.
And the way that we fight a virus or get rid of a virus is to kill that cell off. And so, if that cell or that virus is inside the cell, it can easily become part of our body. Our body doesn't find it anymore. It doesn't target it anymore. It becomes part of our DNA. That's the gift it's giving, but it's going to take few generations to get there.
But right now, our bodies are like, “What in the world?” It becomes almost like a setup for the autoimmune disease. Because now the cell – the virus is inside the cell. And the cell isn't necessarily tagging it. The immune system says, “Oh, you must be self.” Again, regulating immunity through regulating microbiome, frequency-based things. And my favorite plants are –Licorice is one of my favorite plants. And while you would think Lemon Balm, because that's used for a lot of these Herpes viruses, lemon balm is dopaminergic. Meaning, it can raise dopamine, and it can raise glutamate. I avoid lemon balm with PANDAS and PANS kids, because I've seen it make kids way worse.
I think we have to be careful that it's not like, “Oh, this is good for the brain. It must be good for PANDAS and PANS.” An autoimmune brain is so different than a dementia brain, or an autism brain. The mechanism that is happening is completely different. That's why I don't use turmeric or Boswellia. These are things that are good for the brain, but they also increase dopamine and can agitate and make the problem worse.
[01:04:43] SCOTT: A subset of kids with PANS and PANDAS will have immune deficiency or chronic immune deficiency. Many of them have more hyper vigilant, over-reacting type immune responses where we're kind of calming things down. But then there is a subset that really has a chronic immune deficiency that could be contributed to by some of the things you've mentioned, the weed killers, the mold, the EMFs, the mercury, the chemicals, all of those things. What are some of the things that you're thinking about to support the immune system and those kids that really do have an immune deficiency? Is colostrum one of them? And then how often do we need to be thinking about IVIG potentially?
[01:05:24] DR. JILL: Yeah, the immune deficiency piece gets a little dicey, because you would think, “Oh, immune deficiency. We see low IgG.” Or maybe not even a total low all the time. A lot of these kids have transient low IgG, or a subclass low IgG, or a transient low IgA, or maybe even an increased IgA, which to me tells me we have a parasite problem to take care of. So, it would make sense, “Oh, let's just give them IgG.”
Orally, that tends to work, because it's helping the microbes. We don't see that IgG passes through the gut, or it shouldn't be passing through the gut ball. By nourishing the microbiome, you can help to strengthen the immune system. But giving subQ IG, which is giving immunoglobulin replacement, can actually make the problem worse, because we are helping the body make antibodies to itself. We're giving it more ammunition to fire on itself.
Then you might wonder, “Well, why are we giving it IV?” Well, IVIG, we are giving at such a high dose. It's a suppressive dose. It's so high that it shuts down the bone marrow from making more immunoglobulins. So, that over time – and it usually needs to be repeated. I've rarely – I think I've seen two cases where it was a one and done. And those were really robust kids that went into their PANDAS and PANS because of a dental filling, and then a weed killer, acute weed killer exposure. So, it's just like, “Boom!” All at one time. Those kids can get one IVIG and be done.
Most of the kids are needing multiple rounds of IVIG so that we keep suppressing the bone marrow, and we keep suppressing the bone marrow, we keep suppressing, so that eventually – And we're suppressing by giving more than the body needs. Then the bone marrow says, “Oh, I’ll go on vacation for a little while.” And by doing that, it gets what it was upset about. And it forgets to make auto antibodies. And then it just addresses the things that are present and real today.
That's where supporting the immune system gets a little bit tricky. While a subcutaneous immunoglobulin, which is what we give people for combined variable immunodeficiency syndrome, we give people for low IgG, that's going to make a PANDAS kid works. And that's why then if the oral things don't work, like colostrum, like immunoglobulins orally, like an SBI Protect or something like that. I like that one in particular, because it’s not dairy based. And so, it doesn't kind of flare a lot of kids that can't handle the colostrum.
Then, we tried specific probiotics that we're looking for. I like to use the spore-based probiotics. They do more rebalanced than repopulate. And I really liked their effect that they have. Then that's when I would go into the exosomes. Because what the exosomes are is little messengers from stem cells. And they have a way of educating the immune system without adding to the immunoglobulin piece. Also, peptides can do the same thing. These are fantastic ways to modulate the immune system that don't increase the ammunition to self-attack.
[01:08:48] SCOTT: Cool. Oh, my gosh. Even I'm learning a ton of new stuff. And I already read your book.
In someone with PANDAS or PANS, we've talked about the contribution of mold, of mycotoxins. Just wondering, how often is it the case that you're looking at the external environment to help move these kids forward? Is it almost always something that you're having to do externally as well to be able to then improve their internal health?
[01:09:15] DR. JILL: Absolutely, I think it's almost always. It's so rare when there isn't an environmental component. And that's, I think the big message I'm trying to put out here with my book, is that it's not just the bug. There were a lot of straws put on the camel's back before that one infection. We've got to know what those straws are. And it's not always a SAD diet, or bad sleep, or – It's usually something really profound environmentally, but that we have so much normalized in our society.
You know, like people walking around with Roundup on their lawns and just spraying it and not even thinking about how abnormal that is.
[01:09:56] SCOTT: I know. It’s crazy. It’s crazy.
[01:09:58] DR. JILL: I know. And as you know, mold is such a hidden thing that it can be going on and people don't even know that it's a problem because it doesn't stink. Mycotoxins can move right through building material, and they have no odor. It's not like you get that nose hit or even a visual hit until it could be going on for years before you know it's a problem.
[01:10:22] SCOTT: In the book, you outline a number of specific diagnostic criteria. You highlight that it is a clinical diagnosis. You share an extensive list of tests that you can consider to explore this arena. I'd love to hear your thoughts on the Cunningham Panel and the Neural Zoomer. And what are some of the key tests that you're finding helpful for really assessing the degree of immune dysregulation or the degree of autoimmunity?
[01:10:48] DR. JILL: Usually, the symptoms tell us the degree. It is. That's why it's I think handy to remember it's a clinical diagnosis. Now, sometimes you need something on paper that either convinces one parent or the school system. Or may help us get coverage for the IVIG because it's very expensive and needs to be repeated in most cases.
What I'm running just as a baseline is immunoglobulins total for IgG, A, E and M. So, I think of it as iGAME, or a game, get your game on. And then subclasses for IgG and subclasses for IgA. And I warn parents, don't do all the support for two weeks. Just let nature take its course. Don't do all this stuff that you do. Because parents have kind of – overtime, they started adapting and they start cutting out this dietary thing and supporting them with colostrum and supporting them da-da-da-da. All the things that you do. The circus act to keep your kids seeming normal. Stop all of that before we do the labs so that we can see what is the trough? What's the lowest point that that kid is riding at without all of the magical support that you're doing?
And that includes like, even something as simple as a zinc lozenge. I've seen that turn a Strep culture negative. Take away all your supportive stuff, because it works. That's why you made the Strep culture negative. It works.
An iGAME with a subclass IgG, IGA. If there's mold exposure, I like to run a natural killer cell function test, this is through Quest, that is given in lytic units. If you're looking at a natural killer cell total count, that's not going to give you the information that we're looking for.
Mold and mycotoxins are one of the few things that reduces that function. And if it is, in a kid, below 20. It says below seven is abnormal. But in a kid with PANDAS and PANS, a kid with autoimmune disease, we want to have it be definitely higher than a seven. And if it is lower than a seven, that is putting that human at risk for developing cancer and a secondary autoimmune disease. So, they will be the kid who, once we start IVIG, may get Hashimoto’s during the IVIG treatment.
The lymphocyte map is another way that I like to look. If they have a low IgG or IgA total, or even a subclass, that's going to make our infection labs a little bit unreliable. Then I wouldn't necessarily run IGeneX-based, or Vibrant-based, or anything like that, anything as antibody-based Lyme. Then I run a Lymphocyte Map and we see, “Can we rely on T cells?” And if the T cells are reliable, then we can run an Armin Labs or Infectolab.
We can look at things through different ways. And we have to understand then, “How far along is the immune depletion? And what type of immune depletion do they have?” Because it gives us some clues. If it's antibody-based, we can say, “It's probably going to be mold is part of their picture.” Natural killer cell-based, definitely mold in the picture. If it's just T cells, then I'm like, “Well, we might be looking at more tick-borne problems.” There's going to be the crisscross and trying to kind of get the information. But when we're trying to do infection testing, it's nice to know what your baseline is of all those.
Yeah. I mean, really, we're going with symptoms with the kids. I have seen really, really sick kids have an equivocal Cunningham test. And this can be more PANS. I think Cunningham was really helpful for a PANDAS.
Because what we know, Dr. Patrick Cleary, in his research in Minnesota, is that there were a lot of zero-negative positive PANDAS cases. That means their ASO was normal after a Strep infection, which it shouldn't be. We should all, after a Strep infection, have a positive ASO for a little transient period of time, or Streptolysin, because that's how our body gets rid of it. So, we're seeing that there's some – immune depletion is definitely at the foundation of these conditions.
The lab testing, I think Cunningham was very, very good for a PANDAS. The Neural Zoomer is nice for PANS cases. It's catching more of the PANS. What I like about the Neural Zoomer too, is it gives us a blood brain barrier look. We know if blood brain barrier is a mess, gut needs to be our focus. And I do also do a parasite rollout in those cases.
[01:15:35] SCOTT: We know of the NeuroQuant from Dr. Richie Shoemaker’s work in mold illness, chronic inflammatory response syndrome. Is there a place for the NeuroQuant in exploring PANDAS and PANS? Do we see more hypertrophy, or swelling, or more atrophy? And are there certain brain regions that are impacted more in terms of the pattern or fingerprint in PANDAS and PANS?
[01:16:00] DR. JILL: It's definitely helpful tool. And it is amazing to me how a parent who has seen a kind of not great looking Neuros Zoomer and is like, “Yeah, but maybe –” Especially when we have parents where there's a divorce situation, and the kid flares when they go to the moldy house. And then they're better when they come back to the other house. As the doctor, you're like, “Do we see a pattern here?” It is amazing to me how the NeuroQuant picture. The picture of the brain will be the thing that everybody goes, “Oh, this isn't just bad parenting.”
And so, yes, I do love the NeuroQuant for that very reason. Or even if you're trying to convince a school that you need a 504 plan or something like that. What we're going to see is that there's going to be more inflammation. It's not necessarily going to be like an Alzheimer's before you see the reduction.
[01:16:53] SCOTT: Sea of red. Yeah.
[01:16:54] DR. JILL: Yeah, yeah. You're going to see more of the inflammation, and it's going to be in those dopamine-rich areas. So, the basal ganglia, the limbic system. So, the cingulate. those are areas. Particularly the basal ganglia. And it doesn't have to be the whole caudate it doesn't have to be all three regions. It can be one or the other, depending on how long the kids been at this.
[01:17:17] SCOTT: Now let's talk more about some of the solutions. You talk in the book about the Core Four, which are Tame the Flame, Beat the Bugs, Regulate Immunity and Guard the Gates. You build your protocols around one or more interventions for each of these Core Four.
Let's talk about Tame the Flame. Tame the Flame is about inflammation, inflammation, neuroinflammation, being a driver of many of the symptoms. What are some of the interventions that you might consider in taming the flame?
[01:17:49] DR. JILL: Yeah, taming the flame, the whole concept is the inflammation. That's going to be what I call the flame tamers, the mast cell managers. We also have NSAIDs. Like, good old NSAIDs. I am a big fan. I'm in the Ibuprofen and Naproxen fan club when it comes to these conditions. It is amazing how, if we've done the – we've talked about resolvins, feverfew resveratrol, I think I haven't mentioned yet, rosemary, these are all – pine bark or pine needle extract. These really reduce microglial activation. They've really reduced that neuroinflammation. So, the how much monkey poo these guys are flinging.
Whereas, the NSAIDs will just help mop up. They do a good job mopping. If something has already started, and if a kid is really, really severe, to the point of self-harm, not sleeping, some of these things, that those are really important things to keep a kid safe. And sleep is a really important part of healing. We'll just go right to the NSAIDs. Just go right there.
If that didn't touch it – and we're talking pharmaceutical grade. So, you want to be working with your doctor to make sure that you know what to watch for, such as bleeding problems, stomach irritation, that kind of thing. Work with your doctor when you get to that point.
For some kids, that's not going to even touch it. They're so sick. And they have such an infection and toxin burden that they need steroids. And the Stanford PANS clinic has mentioned, for the patients they're getting referred to their clinic, which are going to be the classic PANS cases, but more on the severe spectrum, they're seeing that oral steroids aren't even hitting it. So, they go to the IV.
And it is life saving for some of these kids. I mean, all of a sudden you have a kid who's isn't harming self, or siblings, or a parent. Or maybe they started eating again. They're really important for just shutting things down so we can get some work done. I hope people are understanding, I'm an herb fan, but I also am going to use whatever tool is indicated for that patient. Yeah.
[01:20:05] SCOTT: The next of the Core Four is Beat the Bugs, which you break down into the botanical avatars and the botanical antimicrobials, potentially pharmaceutical antimicrobials. These also sometimes have to be of long duration. What's the difference between a botanical avatar and a botanical antimicrobial? Are the avatars kind of the superheroes of botanical medicine? As you mentioned, kind of checking a lot of the boxes. And what are some of the key avatars for this core for?
[01:20:35] DR. JILL: Yeah, avatars are a little different than antimicrobial because they have some antimicrobial activity. But that it's not necessarily their strongest thing that they're doing. And that really speaks to what you're talking about with immune modulation of like it's just so important that we're paying attention to whole parts of this spectrum, that there's a reason why the body went autoimmune. It lost its distinction to what is self versus what is other. And that takes a different – quieter hand almost sometimes.
These botanical avatars like we talked about, they're hitting all of those marks. A lot of them are not strong enough on their own if you have a really infection burden child. We will need to add in some antimicrobial. In some cases, we blow right past the botanical antimicrobials and go for pharmaceuticals. I might use a botanical avatar and then pharmaceuticals. What we might do azithromycin at the same time as we do Scutellaria baicalensis or Chinese skullcap. Or as the same time as we're using silk tree, which is Bacopa. I mean, there's just beautiful ways that we can do this with these avatars and mixing and matching what's going to work for the kid.
Other avatars is Oregon grape root or any of the Berberine plants. I had mentioned Albizia easier. Magnolia is another one. You have this whole host. Bupleurum. How could I forget? Bupleurum.
Bupleurum is one of them that it has potential in some kids who have certain genetic snips to increase their dopamine a little bit. That's one of them that, if I have a kid who has a lot of drug reactions, one of my favorite tests actually is to check how their body will process pharmaceutical psychiatric medication.
And then if I'm seeing that they're really high on a lot of those, those snips that's going to affect drug metabolism, I'll skip the Bupleurum for that kid and I'll use one of the other ones just to make sure that we're not tweaking that.
[01:22:39] SCOTT: We have these botanical avatars that have antimicrobial properties that they have lots of other properties that are helping to support the body in these conditions, helping to support inflammation, immune modulation, all of those things. But then you get to bringing specific, more targeted antimicrobials when additional support is needed. You mentioned a couple of those along the way, the Cryptolepis, the Japanese knotweed. What are some of your other go-tos for the botanical antimicrobials?
[01:23:09] DR. JILL: Yeah, I like to know what bug we're killing or what bug we're paying attention to. If I have – and I had mentioned, Strep is a problem for all the kids once the autoimmunity has set off. If I'm using a botanical avatar that doesn't have a strong anti-strep piece, then I will make sure that I add a botanical antimicrobial or pharmaceutical that is Strep-focused. Or if it's Mycoplasma. I mean, Chinese skullcap is great for Mycoplasma. It's a foundational formula in a lot of Chinese formulas where they're actually treating successfully Mycoplasma.
If I'm looking for an additional Strep thing, I might use Echinacea. I mean, it doesn't get a lot of respect, even though it's like, “This is an incredible plant. It's doing so many things.” As we talked about mold is usually in the picture for a lot of these kids. I like to use thyme, oregano. A lot of them have like a kid version of SIBO. So, oregano is really nice to use.
And I forgot, when we're talking about the Lyme ones, one of my favorite is black walnut. I have black walnut trees. I make my own tincture from my own trees. And it's just a really – Black walnuts has got so much going on. Anti-inflammatory, big time.
And so, if I'm thinking, “Well, there might be a parasite piece to this.” I see a positive S100 on the Neural Zoomer, “Yeah, we're going to toss a little black walnut in there as well to make sure we're getting that out.” Yeah.
[01:24:35] SCOTT: When we're working on this beat the bugs phase, how long does the focus on microbial support in PANDAS and PANS generally last? And people ask me this question all the time, “Well, how long is it going to take to get well?” And there are so many variables, right? Probably the biggest is, “Do you still have mold exposure in your environment?” But give us some thoughts on how long is the focus on microbes generally. And then does it end? Or do you go into more of a maintenance mode longer term? Or maybe a pulsing type thing where you're doing a few days a week, or one week a month, or something like that, where you're trying then to prevent future exposures from triggering another flare cycle?
[01:25:16] DR. JILL: Yes, yes. Yes. All the things – The how long question is usually the most depressing answer for parents when we're sitting together. Typically, with an adult, the general rule of thumb is for every year you've had this thing you're dealing with, even if it's a little bit, it's going to take a month to recover. But in the kids, once it's become autoimmune, anything autoimmune, it changes that rule.
What I'm seeing is typically what we need to get through is at least one whole year from whatever Strep season start. If they're coming to see me in July, we need to get through that Strep season to the next July of pretty continuous anti-bug support. That's not always going to be pharmaceutical support. That's not always going to be to the level where we actually need to add an anti-microbial botanical. That might be the avatar that's holding it. But typically, not.
If they're coming to see me mid Strep, we need to get through that Strep season for another year through that Strep season. If they're coming to see me in January, we need to get to the next – not that March or April, but the next March, April, before we start playing around with, “Can we pulse? Can we –” Then we get into maintenance mode. And then we look for flare times, which is going to be Strep season, fall, winter, typically. Yeah, because mycoplasma is kind of on the same timeframe.
[01:26:53] SCOTT: The third core is Regulating Immunity, that immune modulation piece. Personally, in my journey, I think that actually was probably more important than the killing piece of it. I know you have to do both. But that immune dysregulation can just create so much of the inflammation, so many of the symptoms. You've talked about things like butyrate, and peptides, and immunoglobulins, exosomes, IVIG. You mentioned in the book that we don't want to forget things like vitamin D and vitamin A. And one thing that you point out, which was really interesting to me was you say that mold reduces our ability to absorb vitamin D.
[01:27:31] DR. JILL: Mm hmm. We miss the most obvious with D. If we're not maximizing that – it's so important. And now thankfully, COVID, I'm hoping, has had everyone realized how important this nutrient is. And it's not just the supplement, It's the getting outside part as well. As early in the day as possible that you get your eyeballs on that sky, the healthier your kid is going to be. And they become very scared of that. They become very sensory sensitive. They have sleep issues. It can feel like you're being the meanest parent in the world to make them get up if they haven't slept all night. But that sets the circadian rhythm. We are solar-powered human beings. We are not owls. We are human beings. And we need to be outside in the sun. It only takes 10 to 15 minutes in the morning to set that circadian rhythm. And that will help your child sleep at night.
That's all well and good. But if you have a mold exposure, you won't be able to absorb vitamin D. Actually, it down modulates the receptors in our kidneys in our intestines. Typically, my patients are going to need support. They're going to need supplement. And because of the action of mycotoxins on the bile, and gumming it up, I might say, then what we have is a problem with also absorbing the supplement.
I like to use liposomal. I think that's really, really critical. I've had so many times where patients were taking their D, taking their D, and we're like, “Why is this not moving?” For starters, I was not using enough. If you have downregulated receptors, you have to flood those receptors, so that the body will start to make them again to receive vitamin D.
Over time, you don't need as much. But in the beginning, I use liposomal. And I use pretty high doses. I dose it to lab values. I try to get kids between 60 and 90 nanograms per milliliter. And hang there for three months, because we see the flare cycle is about three months. Hang at that level for at least three months, ideally six months, so that we can – before we start talking about reducing the D.
Vitamin A I think is in the same category. There aren't studies that show this, but I think that there will be. If we did one, I think we would find that mycotoxins block vitamin A absorption as well. Anything that helps defend us from mold moving in. And then just basic nutrients. A lot of kids are very nutrient deficient. I have a joke in my book that I have with parents, I call it seasoned chicken. Because then you can remember all the nutrients. It’s basically spelled like seasoned chicken. It's selenium, E, A, zinc. That's the N. Just for people that are like, “Wait, what's the N?” It’s part of the zinc. And vitamin C. These are also important at the very hint of exposure, infection, anything like that, bump it up. And bump it for two to three days. Very high doses. Give your body that nourishment that it needs. And that can be the thing that can keep the child from getting the infection that then starts the whole cycle over again.
[01:30:36] SCOTT: In the past couple of years with immune dysregulation from COVID, low dose naltrexone has really, at least in my mind, reemerged as a top tool for immune modulation. It isn't always super obvious when people take it. Some people do notice a difference. Some people maybe don't notice something super obvious. What do you observe in the PANDAS and PANS population when using low dose naltrexone?
[01:31:00] DR. JILL: What I see is a lot of reduction in pain. And it's this low-grade central mediated pain that they deal with. We see this with other central-mediated pain syndromes, such as from a traumatic brain injury or CTE. That when we give SSRIs, that they can have a reduction in body pain. And this has to do with a central-mediated pain syndrome.
These kids have the same tweaking at the brain level, and they live with a lot of pain. They don't describe it, because it's not one of those things that if you have intrusive thoughts that is going to come – it's not going to hit the threshold of like, “Well, yeah, I also have this.” Because they're so distracted with the thoughts. And working through the parts of that.
They can also get so much swelling with their head. They have chronic low-grade occipital headaches. It's very common. A lot of kids will say I just feel so full in here. And they're kind of pointing at their upper neck and occiput. That's getting a lot of attention, because that's where a lot of the swelling is happening. We talked about a NeuroQuant. There's actual CNS structural inflammation. But they live with so much low-grade – I shouldn't say so much. It's so pervasive. And it's this low-grade body pain. And that's what I'm seeing in naltrexone. Really lift that body pain. It’s not necessarily like the magic for sleep or anything like that, because they have so much dopamine and glutamate going on. But it chills out that pain part. And by reducing that burden of pain, we can see an improvement in the ability to have joyful moments. Because when they're living with so much pain, they just are really beaten down.
[01:32:45] SCOTT: Beautiful. Now we move on to the last of the Core Four, which is Guarding the Gates. Another word for gates might be interfaces, or those areas of the body where there is contact with the external environment. You talk about the nasal, the throat, the dental, and the exposure gates. So, we really want to focus on fortifying these gates so that we're not allowing in more infections that they're toxified or strengthened.
We touched a little bit on the nasal piece earlier. But let's dig into that a little bit more. From you, I think, I actually found out about the NaturaNectar Nasal Guardian. That's one of the ones that I now really love for guarding the nasal gates. What are some of the other tools that you're thinking of for guarding the nasal gates? And the is there anything – anti-microbials, certainly. But are there things that you're doing to also support the microbiome of the sinuses? Meaning, probiotics for the nose essentially?
[01:33:43] DR. JILL: Yeah, yeah. And we do this for mold too. I have a course, mold in kids, that is like, “Okay, you can't just spray stuff up every kid's nose.” Because kids are still developing their sinuses. If they are getting their PANDAS and PANS at like four or five-years-old, a nasal spray may be a little too aggressive for them. There are things that we can do to help.
And I do love the supporting the microbiome of the nose. Start there. Through humming, we talked about, you can get that sterility zone. But Lactobacillus sakei and casei, although I haven't seen any commercial products available with casei. But Lactobacillus sakei is available, Lanto Sinus or Nasobiotex. This can be swabbed in the nostrils. Or if they have a lot of sinus congestion, can be used in a neti. That's just a lovely like first step. Talk about giving more soldiers to a depleted army. That's a really nice way to keep biofilm down and to keep those infections down from respirable infections.
I also love inhalation sticks with essential oils, like Olbas inhalation stick. And you introduce me to a whole new – it's like this plethora. It's like the foodie version of inhalation sticks. And then and steam inhalations. A lot of our anti-microbial herbs that have an aromatic sense to them, such as thyme, such as sage, once they're in the volatilized steam form, not only can it get to every crack and crevice of our breathing passages, and are safe to breathe deeply into our lungs, the antimicrobial part of that gets more active than if you would have drank it as a tea, take it as a capsule, or eat it as food. There's something about the steaming part of it.
And a lot of kids that have separation anxiety and sensory problems with their PANDAS and PANS, especially if they're PANDAS, PANS autistic, they find this very relaxing. Basically, they close out the rest of the world by putting a towel over their head. And they get to just sit in this with a bowl of steaming herbs. And that is incredibly antimicrobial and anti-inflammatory, anti mast cells. I mean, there's lots of things that are good that they're shutting down.
[01:36:06] SCOTT: You mentioned peptides. Thymosin Alpha 1 is one for immune modulation and dealing with auto immunity. And that systemic inflammation can be very helpful. But one thing I didn't realize is that it potentially can help with that physical rebuilding of the nasal gate. So, tell us about how that might work.
[01:36:24] DR. JILL: Yeah, the peptide is helping with the leaky barrier of the sinuses. This is one you want to use carefully. So, your doctor will have to – first of all, it's prescription. But I wouldn't use it with a kid during a flare. This is one that is working kind of like a colostrum might work, but a little more aggressively than colostrum, because we're putting it right in the area near the inflammation and the activation. It’s going to nourish the immune system and might activate it a little bit might. It increases mucus a little bit. We don't necessarily want to use this in the midst of a big flare. And it's lovely to use in between the flares to get the barrier back. And I also like my homeopathic MSH for this — it’s wonderful for them —
[01:37:10] SCOTT: Talking about the throat gate, you talk about herbal gargles, throat sprays, carrot poultices, and reservoirs of infections. You also talked about peloid therapy. Talk to us about the peloid therapy and the carrot poultices relative to how they might be helpful in protecting or tonifying the throat gate.
[01:37:31] DR. JILL: Yeah, so throat gate. A lot of times these kids have a lot of lymph congestion. So, what the peloid is going to be doing is moving lymph. Whereas as a care carrot poultice is going to be contributing bioflavonoid. Carrots, we know, are very high in beta carotene. They’re very high and lots of wonderful aspects of phytonutrients that are going to help basically give a vitamin to the immune system of that area.
One of the things that we know is when a kid gets – people are like, “Why are you worried about the nose? This is Strep throat? This doesn't make any sense. Why are we focusing on the nasal gate when this is a throat problem?”
Well, when you have a throat infection, our immune system will send antibodies to our neck. So, the lymphatic system in our neck. That's why I focus on peloids moving lymph there, carrot poultices there. We have so much lymphatics going on and immune soldiers in our neck. And by giving it topically, we can get both lymph movement and also the bioflavonoids that are going to be helping the immune system. Because once we get antibodies in our neck, they're sent back up to the throat, but also to the nose. And either it's those antibodies, the presence of those, that kicks off the Th17. Th17 can ride a nose elevator up to the brain and that's how we get brain inflammation.
[01:38:53] SCOTT: Next, we think of the dental gate. A significant contributor to poor overall health and adults as well. The oral microbiome. Essentially, some people like to use antimicrobials. Other suggests that we really want to focus on building the microbiome of the oral cavity and not so much creating a desert by killing everything. What are your thoughts and favorite dental gate interventions?
[01:39:17] DR. JILL: I love Dentalcidin as a toothpaste. If the child does have a lot of dental caries, then I'll also have them alternate a myrrh-based toothpaste. Some kids really need the anti. They've gone so long, because they're not eating particularly well. For some of them, they have swallowing issues. They may have salivation issues. They may have dehydration from the mold. Some people do need to go all the way to the kill phase, which would be more like the myrrh toothpaste.
Dentalcidin and I find more as a biofilm busting agent than like a kill agent. I like that one for like a daily use. And then xylitol. Xylitol, even Xylitol gum. There are studies in real human children who do that show that by chewing Xylitol gum after eating for five minutes greatly reduced in – a huge statistically significant way, reduced dental caries and the pathogenic Strep that has to do with that. That's so easy.
You know, what kid are you going to get to say, “Oh, did you chew your gum yet?” We have kids like, “Did you take your tincture yet?” But if you're handing them a gum, “Did you chew your gum yet?” That's just a really easy way to manage the dental gate.
They find that the saltwater gargle doesn't really do a lot to be anti-bug. But it does help, I would say, just with the milieu. I think it's helping with mucus.
[01:40:49] SCOTT: The last gate is the exposure gate. Here, you talk about respiratory infections, tick-borne or vector-borne infections, environmental exposures. You also talked about foot baths and glycine. The importance of minimizing new infections. Minimizing vector exposures for these vector-borne infections. Minimizing environmental toxicants.
There is some debate about foot baths. It's been a very long one. I personally do find them helpful. I think my opinion was largely from my mentor, Dr. Dietrich Klinghardt. It is something that I still continue to use. What is it that you find helpful about foot baths? And what is a channelopathy?
[01:41:29] DR. JILL: Yes. Foot baths, the way that they're working, is through voltage-gated channels on the cell membrane. That's what we understand anyway. Or that's my understanding of it. And I could be made wrong once we do more studies.
So far, this is one of the most reliable things that I can do with a kid that will lower their glyphosate levels. You can test the glyphosate in the urine through Great Plains Lab. And we get a number. And this is based on autism research that I had read and was like, “Well, what's it going to hurt to do a foot bath, as far as the least harm, first thing. It might cost them some foot bath appointments.” But let's test and see.
And so, when we actually act like scientists, and we pre and post-test things, this is something that's really moving. And what we're finding is that from Dr. Stephanie Seneff’s work, and Dr. Greg Nigh. In her work, she's finding that the glycine part of the glyphosate is potentially bumping our natural amino acid glycine out of the way. And this can lodge into the channels. This can create – because it's a larger molecule than glycine. And glycine is a component of our glutathione.
If the cell is saying, I need more glutathione for my natural cell antioxidant, things that I'm trying to just metabolize.” And the glycine goes in, and it's actually glyphosate. Boom! It's now on that cell membrane, and it's creating a channelopathy. So, now things can't get in and things can't get out. And I think that what foot baths are doing is they're bumping glyphosate off the cell membrane, so that the body can then detoxify as best as it can.
[01:43:16] SCOTT: And that's significant, because I think that some people also feel that the fact that glyphosate is being replaced in our tissues might also be one of the reasons why we're seeing more hypermobility, more Ehlers-Danlos, more of those kinds of conditions as well, weakness in our collagen and those types of things. I think there's still a lot to be learned about how widespread the impact of glyphosate is on our health.
In the book, you take all of this amazing information around the Core Four and the gates. And you demonstrate a number of treatment plans for how you might put all of this together for specific scenarios. It's an incredible resource. I urge people to get the book, where we've covered a lot today. But we're not beginning to cover how much great information is in the book. What are some of the supplements or herbs that you might use with caution in the PANS and PANDAS population?
[01:44:07] DR. JILL: Yeah, I talked or alluded to them before, it would be things that are going to be dopaminergic or reduce the body's breaking down of dopamine, glutamate, or acetylcholine. And I just see it used all the time because it's “good for the brain”. And it makes total sense. And I used to use it was turmeric. And then I had kids flare. They taught me this.
That's the thing, is that you make mistakes in practice. And because I work with ultra-sensitive patients, I try to add one thing at a time. And because I'm using herbs instead of like a capsule that has a lot of stuff in it, or even an herbal formula that has a lot of stuff in it, I had the flexibility to start one thing at a time and see what worked. And my patients taught me this. In a flare, adding turmeric flared my patient.
And so, because what I’ve then went to the science and looked at is dopaminergic. So as Boswellia, which is Frankincense. However, Frankincense essential oil seems to reduce it. But Boswellia, taken internally, seems to flare. A flared kid.
Other things that we would say would be the calming things like Lemon balm, Passionflower. Those are things that, again, well-meaning doctors saying, “Oh, this is an agitated kid who's not sleeping, who's having manic episodes. Let's give them Lemon balm or let's give them Passionflower.” Giving them single plants and then seeing it flare and keep a kid up even more hours. And when you look at it, it's dopaminergic.
I'm also very cautious with CBD. Again, an autoimmune inflamed brain is different than an inflamed brain. Once it goes autoimmune, these kids have a very high risk of having depersonalization problems if they have an ecstatic plant of any kind. So, like the ketamines, and CBDs, and THC. We’re just really careful. I wouldn't use either of those, the THC in a child. But I have had CBD cause major depersonalization, and especially PANS teens. I'm careful. I just want to make sure that people are – it's not a no. It's a caution.
And which by the way, if these are all things that lower – or that increase dopamine, when kids are between flares, they may have a dopamine crash, and they can get really depressed. They can get into despair. And this is where we have suicidality. These might be things to use between that we would be looking for dopamine boost.
Another one that's used a lot for histamine is hops. Hops is a wonderful anti histamine, mast cell stabilizer. However, it's also dopaminergic. Again, if you have a real histaminy kid and you see, “Ooh! I read this study and it shows the hops is good for histamine problems.” Maybe not for a PANDAS/PANS kid just while you're getting him into the maintenance mode. Kava Kava, very calming. Very calming plant that you would give for sleep, also dopaminergic. I don't use that with PANDAS/PANS kids.
[01:47:18] SCOTT: Am I remembering correctly that you also have some caution around the use of melatonin?
[01:47:23] DR. JILL: Yes, melatonin can disrupt puberty. So, melatonin in a child. Any kid. This is just any kid. I use melatonin a lot with mold because we see that it helps with ochratoxin, helps with citrinin, zearalenone, anything is really hard on the kidneys. Melatonin is also a brain antioxidant. So, it helps with Chaetomium or Chaetoglobosin, Enniatin. Some of those mycotoxins that can cross the blood brain barrier.
However, I don't use the oncologic doses that I use in adults in children, because I don't want to mess with puberty. And there are plenty of studies on this that show that long term melatonin at too high a dose can affect puberty. I try to keep with kids under three milligrams. Any dosing that I give in my book is based on adult dosing. And then I have in the back, in the references part, or resources, I show you how to adjust that for your child so that you're doing it by weight.
[01:48:17] SCOTT: Melatonin is my personal drug of choice. And I think I've taken it every day since I was about 21 years old.
[01:48:24] DR. JILL: Yeah, fun for an adult. It's very safe. Very, very safe. And you know, in cancer therapy, we're using 20, 50 100 milligrams, because it is such an amazing fat-soluble antioxidant. But in kids, we want to also mind that.
[01:48:38] SCOTT: Yeah, absolutely. You talk about structure. You say it's important to routinize your family, to have a schedule that creates calm for these kids. You also talk about the importance of structural alignment, of breath, work of movement, and even the structure of water. How do we structure our water to optimize hydration and also support detoxification?
[01:49:02] DR. JILL: This is going into kind of more what's considered woo right now. But I think as the science bears out, we realized we are quantum biology. How about that? Structured water is basically naturally derived water in our body by moving, which I think is part of the movement disorder, is this discharge has to happen. There's an electrical discharge. But also, a lot of times, there's pretty complex tics that come with it. And I'm like, “Oh, they're just trying to discharge because they probably don't have enough structured water to take the extra charge.”
I've seen that structured water also helps with pain. It helps with reducing tics, behaviors, sleep. I'm trying to think of all the different things. Gut problems. It's just like all we did was change the water. This is beyond a deuterium-depleted water. However, a deuterium-depleted water does come and just structures a lot easier. But there are little things that can actually structure water. They spin it and things like that. You can put on a water bottle.
I really liked the Spring Aqua system. It’s something that, for a lot of my families, because we're looking at reducing chlorine, we're just looking at reducing things that are in city water, we're looking at re-mineralizing, because a lot of them have mold. And once you have mold, the body doesn't hold on to water very well. And so, adding in those things. And then it structures the water, so that you're getting kind of the four parts of the water that we're looking for.
Just spring water, which is what I talked about in my mold book, is structured water. Water gets structured by bouncing over the rocks. Babbling brooks are structured water. If you just think about that. Like, I have a few patients that are like that, “I'm just going to put rocks in my water.” I'm like, “Try and see. I don't know.”
[01:50:55] SCOTT: Dr. Nathan, our mutual friend and colleague, is super excited about the TTFD form of thymine or B1. Wondering if you've had an opportunity to use TTFD and the PANDAS and PANS population.
[01:51:07] DR. JILL: I've been using Benfotiamine probably more than that, just the fat solubility, and all the B vitamins. I think, as more information in books are going to get published on riboflavin and the magic of that, and B6, a lot of PANDAS/PANS kids need B6 before they need to B1. If there's mold, they need more B1, because we know that the alcohols in the moldy air are depleting B1.
I think that this is probably a multivitamin issue. Because a lot of the mitochondria and a lot of our ATP is run through these cofactors. It's only running because of these coenzymes and cofactors. I think that, for me, I started B2, B6. And if there's mold, then B1.
[01:51:53] SCOTT: I personally am a huge fan of complex homeopathy for drainage remedies, drainage support, things like Pekana, Energetics, DesBio, which you mentioned earlier. Wondering if you find homeopathic drainage support helpful in kids with PANDAS and PANS. And then, while it's technically not homeopathy, low-dose immunotherapy type instance work. Wondering if you've used that in this realm as well.
[01:52:20] DR. JILL: I'm a huge fan of this. It's so important for kids. Typically, it's going to be more than Pekana, just because I cut my teeth with them. And then on the LDI side, I've been using from professional formulas. It’s kind of a sublingual therapy. It's the same kind of an idea. And I was trained in that in naturopathic school over 20 years ago. That part is really important. And it gets missed a lot.
Some of these kids are so toxic, and they're so impaired to do all of the things that would normally be done to help with natural drainage. Either there's diet restriction, or they won't leave their room, or something like that. Using this kind of drainage is quite important. First, make sure they can poop. Because if we're draining cells and extracellular matrix, and it's hitting a wall in the gut, it's going to flare the microglia in the brain.
[01:53:15] SCOTT: How important is it for mom and dad to have a self-care routine to be able to take care of a child that has these complex conditions like PANDAS and PANS? Do you see cases where parents don't do that and then it becomes more difficult for them to take care of their child because their own health is now suffering? And do you find that a lot of the parents of these children also have their own health issues, either vector-borne infections, or environmental toxic and exposure such as mold?
[01:53:47] DR. JILL: Yes, yes, and yes. Absolutely. Parents must be caring for themselves. And it's the first thing to go. Because if you have mold, you have remediation, you have costs. And self-care can be expensive. And so, they put themselves on the backburner. And that can be tragic. And that might actually lead to another diagnosis for a parent that can't then take care of the kid.
That's where I feel like I really hammer on the routine part. Because when a kid converts to the autoimmune part and the behaviors become really disruptive, our world gets small as a parent. Because you're trying to protect your kid from judgment. And what comes with that protection is a false belief that, “Well, now our world is small. And we're trying to protect our kid from judgment of a grandparent, judgment of a teacher, judgment of friends, whatever. And now, that's the only support that's available to me.”
And I want to break that belief. Because you can protect your kid. And that's very normal. And that's very okay. And you can be supported. You might have to look for support through different people, or different facilities, or something like that. But you can be supported and protect your child.
And I think that when the world gets small and they take on that false belief, by protecting the kid, I no longer have support, I have to do it all myself or our ourselves. That's where we get into trouble with parents not taking care of themselves. I encourage every parent to take a look at that. If you're holding that belief, it's a false belief. And to rewrite that belief. We get to choose our beliefs. And then get the support that you need. Because it is out there.
[01:55:32] SCOTT: And do you find that sometimes the child having PANS or PANDAS brings insight or enlightens the potential issues that are happening with mom and dad in terms of their own health? I mean, it sounds like that was your story, right? That was your journey, your experience. Is that common that there is a chronic illness in mom and dad that could then be a contributor to the PANS and PANDAS scenario?
[01:56:01] DR. JILL: There is commonly something going on with parents if there isn't mold in the picture. If there's mold in the picture, they could be completely fine until they got into that moldy environment. And mold is now the thing. So, it's going to be mixed. Kind of a mixed mold decision Tree. Yeah.
[01:56:20] SCOTT: Tell us a little bit about your new book, A Light in the Dark for PANDAS and PANS. We've all been excited about this coming out. How can people learn more? And is there a course that you're planning as well that kind of goes along with the book?
[01:56:35] DR. JILL: Yeah. My book, A Light in the Dark for PANDAS & PANS was named by my boys. They came up with the title. I’m proud of that. And it is in print. It's also eBook. And we're working on an audio for those of you that are in mold and doing the house hopping thing where you can't buy another thing that you have to throw away. Give us some time on that one. And yeah, I would love to do a course that will help parents. And also, a practitioner course is hopefully on the works.
[01:57:07] SCOTT: For some people, it can be somewhat daunting to try and put these different herbs together and so on. As part of this whole process and your new book, have you thought about creating some of your own products?
[01:57:21] DR. JILL: I am actually working with Alight Health Formulas to create blends that are the kind of classic pictures that I see that kind of follow the cases that I gave in the book to make it much easier to administer all of this and get it all done. And I have a formula called Vagus Nirvana. They let me name it. I'm so excited. And that can be used for parents, too. Some of the things that are not good for the kids are really good for the parents, because the parents are running on low dopamine, like schisandra. But in the Vagus Nirvana, this is all things that help to tone and make the vagus nerve very happy, including the lotus leaves. They're just beautiful. I'm getting chills just talking about these amazing leaves that I'm working with them. They're giving me a lot of leeway to choose what goes in there and making fresh plant glycerite so that they have more punch.
[01:58:16] SCOTT: My last question is the same for every guest. And that is what are some of the key things that you're doing on a daily basis in support of your own health?
[01:58:23] DR. JILL: Outside every day, no matter the weather. I get outside. I follow all the things I talk about in the structure part of the book. I get outside early in the day and get my eyes on the sky. If I have my glasses on, they come off so that I get real sunlight right back there. If you have contacts in, don't put them in until you get your sun time. And I know that's tricky at certain times of the year and with certain jobs. Do the best you can. But getting outside is – you must connect with the original charging station, Mother Earth. This is how we're driven. We are from the earth. And we are solar-powered by the sun. So those two things are so, so important. And then movement, and prayer. Those are my big things.
[01:59:09] SCOTT: Such an amazing conversation. If I wasn't afraid that I would fall off my stool here, I'd be standing up and applauding you because you're just – You are such a tremendous human being. You contribute so much to improving people's lives. I absolutely love and respect you. You are a light in the dark for so many people. And it's just an honor for me to not only have you here, but just to know you and for you to have touched my life in such a profound way. So, thank you so much for being here, Dr. Jill.
[01:59:41] DR. JILL: Thank you. Thank you for your profound work. And can I do a plug for some colleagues and their amazing work? Dr. Nancy O'Hara, Demystifying PANS/PANDAS. Amazing book, Dr. Kenneth Bock. You've had him on. I love that interview. Brain Inflamed. And then for kids, Dr. Lindsay Well wrote a great book. This is for siblings to help them understand. So, it's a kid's book. So those are just great resources.
[02:00:09] SCOTT: To learn more about today's guest, visit DrCrista.com. That's DrCrista.com. DrCrista.com.
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