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In this episode, you will learn how to demystify PANS and PANDAS.
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About My Guest
My guest for this episode is Dr. Nancy O'Hara. Nancy O’Hara, MD, MPH, FAAP is a board-certified pediatrician. Prior to her medical career, Dr. O’Hara taught children with autism. She graduated with highest honors from Bryn Mawr College and as a member of the Alpha Omega Alpha Honor Society from the University of Pennsylvania School of Medicine. She earned a Master’s degree in Public Health from the University of Pittsburgh. After residency, chief residency, and general pediatric fellowship at the University of Pittsburgh, Dr. O’ Hara entered general private practice in 1993, and in 1999, began her consultative, integrative practice solely for children with special needs. Since 1999, she has dedicated her functional medicine practice to the integrative and holistic care of children with chronic illness and neurodevelopmental disorders such as ADHD, PANDAS/PANS, OCD, Lyme, and ASD. She is a leader in the training of clinicians, both in the United States and abroad. Dr. O’Hara has written a comprehensive guidebook, “Demystifying PANS/PANDAS: A Functional Medicine Desktop Reference on Basal Ganglia Encephalitis”, which is available on Amazon.
- How is PANS and PANDAS different from Autoimmune Encephalitis and Basal Ganglia Encephalitis?
- Does the onset have to be acute, or can there be a more smoldering presentation?
- How much of the condition is the microbe vs. the host response?
- Can PANS occur in adults?
- What is the role of mitochondrial dysfunction?
- What role do the tonsils play in these conditions?
- Which microbes may be triggers for PANS and PANDAS?
- Are antibiotics required for successful treatment?
- How often do Lyme and coinfections play a role?
- What are some natural interventions for addressing microbial overgrowths?
- Does mold illness contribute to PANS and PANDAS?
- How important is immune modulation reducing inflammation?
- How might helminth therapy be used to modulate the immune response?
- What are some tools for modulating the NLRP3 inflammasome?
- When might antioxidants be necessary?
- How much of the inflammatory burden overlaps with MCAS?
- Might FMT or stem cells play a role in recovery?
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Book: Demystifying PANS/PANDAS: A Functional Medicine Desktop Reference on Basal Ganglia Encephalitis
October 10, 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.
[0:00:01] ANNOUNCER: Welcome to BetterHealthGuy Blogcasts, empowering your better health. Now, here’s Scott, your BetterHealthGuy.
[0:00:14] ANNOUNCER: The content of the 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.
[0:00:35] SCOTT: Hello, everyone. Welcome to episode number 174 of the BetterHealthGuy Blogcasts series. Today's guest is Dr. Nancy O'Hara. The topic of the show is Demystifying PANS and PANDAS. Dr. Nancy O'Hara is a board-certified pediatrician. Prior to her medical career, Dr. O'Hara taught children with autism. She graduated with highest honors from Bryn Mawr College, and as a member of the Alpha Omega Alpha Honor Society from the University of Pennsylvania School of Medicine.
She earned a Master's Degree in Public Health from the University of Pittsburgh. After residency, chief residency, and general pediatric fellowship at the University of Pittsburgh, Dr. O'Hara entered general private practice in 1993. In 1999, began her consultative integrative practice solely for children with special needs. Since 1999, she's dedicated her functional medicine practice to the integrative and holistic care of children with chronic illness and neurodevelopmental disorders, such as ADHD, PANDAS, PANS, OCD, Lyme, and autism spectrum disorder.
She is a leader in the training of clinicians, both in the United States and abroad. Dr. O'Hara has written a comprehensive guide book, Demystifying PANS/PANDAS: A Functional Medicine Desktop Reference on Basal Ganglia Encephalitis, which is available on Amazon. And now, my interview with Dr. Nancy O'Hara.
[0:02:10] SCOTT: I am very excited today to have Dr. Nancy O'Hara with us to talk about demystifying PANS and PANDAS. One of our listeners said, “She has been healing my daughter and now my son. She's amazing in every way.” Thanks for being here with us today, amazing Dr. O'Hara.
[0:02:28] DR. O’HARA: Thanks so much for inviting me, Scott. I'm thrilled to be here.
[0:02:30] SCOTT: What was the personal journey that brought you to working with children with PANS and PANDAS and other neurodevelopmental conditions? What drives your very obvious passion for the work you do today?
[0:02:44] DR. O’HARA: My mentor, Dr. Sidney Baker always said, if you listen, they will come. I have learned more from the families and the patients and the parents in front of me than anything else. My journey is a little bit bifold, but always starts and ends with my own son. I was at first, a teacher of children with autism and I mean this very seriously. I was a lousy teacher. Instead, I took the easier route and went to road and went to medical school. I was a regular pediatrician in a practice and seeing a lot of children with autism, because I had a proclivity toward that.
It was one of those kids who got better with diet. That mom, I actually knew from my hometown in West Virginia, and she came back to me and she said, “You have to learn about this. You have to go meet this guy.” It was Sid. It was Dr. Baker. At the time, I had been going through four years of infertility and Western medicine was really failing me. I thought, well, diet doesn't affect behavior, but maybe it'll help me. I'll go see him as a patient. That changed my life. That was when I first started to learn about natural and functional medicine. I got pregnant several months after seeing Sid. It was amazing.
Then 10, almost 11 years later, my own son devolved into seizure-like tics and got bit by a Lyme positive tick. Had a viral infection all in the same week. Thankfully, at that time, I knew enough that I threw the kitchen sink at him. I've learned a lot since then. That was now 14 years ago. I continue to evolve in my learning, adding more and more about Lyme and mold and everything else. It all starts with the one child in front of us.
[0:04:40] SCOTT: How have the types and severities of illnesses that you've seen over the past 20 years changed? In the book, you mentioned Noah. That was one of the cases where stopping gluten and dairy really did move the needle. Does that move the needle today like it did 20 years ago? Are children becoming more chronically ill? If so, what do you attribute to the increase in severity and prevalence of childhood illness?
[0:05:05] DR. O’HARA: Great questions. I think, first, with regard to gluten and dairy, it still works. The problem is, is that we have gluten sources that are not well identified in so many of our foods now. Genetically modified foods, processed foods, and people aren't seeing that as a gluten containing product. I think, if you haven't seen gluten and dairy-free work in your child with autism, for example, go back. You may have gone through a window and not through the door. You need to reevaluate. You need to be 100%. It doesn't work if it's 99.9%.
Myself, I have celiac. I know, once my stepson served me rice and I said, “Are you sure this is just rice? It looks different.” He goes, “Yeah, yeah, yeah. It's just rice.” I was sick as a dog. It was rice. It said gluten-free, but it wasn't certified gluten-free, and it had natural flavors. Natural flavors, for people that are sensitive. I think that's the gluten casein answer. It can still be very helpful. I do think, back when Defeat Autism Now was around, and I first learned from Sid about 30 years ago, we were a little bit on a whale watch. Meaning, oh, the cure is over here. The problem is over here. No, no, no, let's go to this side of the boat.
It's never, or almost never just one thing. I think our environment and all of the things that we have been exposed to have only continued to get worse. When we've taken for instance, mercury out of vaccines, we've replaced that with aluminum. When we've taken some chemicals out of some products, we've put even worse chemicals in. We've got mold damage, we've got Lyme, we've got all of these things that are part of who they are.
Our kids with autism are just our canaries. I grew up in West Virginia, and we sent canaries into the coal mines. If the canaries died, it meant it was too toxic for the minors. Well, that's what the kids with autism are showing us. Then the kids with PANS and PANDAS are another – in the Venn diagram, overlapping circle to that in some degree.
[0:07:22] SCOTT: Let's talk a little about that Venn diagram. I've done prior interviews on PANS and PANDAS. Listeners have some understanding about the condition. How is PANS and PANDAS different from autism, or regressive autism? How are those conditions different from autoimmune encephalitis, or basal ganglia encephalitis that you mentioned in the book? Is there an overlap between the drivers or triggers of PANS and PANDAS, and those autoimmune encephalitis, or basal ganglia encephalitis type conditions? Do we approach treatment in the same general holistic manner?
[0:08:00] DR. O’HARA: Yes, yes, yes, yes, yes. More in specific, I think, by definition, PANS and PANDAS need to be of an abrupt onset. Yes, there are some subacute presentations, and we can talk about that a little bit later, but by definition, it's an abrupt onset. Regressive autism is not usually as abrupt. With PANS and PANDAS, it's the mother saying they were fine on March 12th. On March 15th, they were a different kid.
Whereas, regressive autism, maybe it seemed like they lost it overnight, but it may have been a little bit more prolonged. Also, regressive autism almost always is in the first few years of life. The child is fine till one or 18 months, sometimes two years and can be later than that. Again, in that overlapping Venn diagram, the PANS/PANDAS kids, almost never start before two. There are some that go lower, but they're usually between three and 13.
As far as autoimmune encephalitis and basal ganglia encephalitis, why I call it basal ganglia encephalitis is that is, by definition really what it is. It's inflammation of the basal ganglia, the caudate, the putamen, the amygdala. Those areas of the brain that get that host response so that molecular mimicry. Rather than attacking the germ that may have triggered the issue of PANS or PANDAS, it's the antibodies, the proteins that are instead attacking the brain. I do believe that much of autism is also autoimmune encephalitis. I do believe that there's a huge inflammatory component to their encephalitis, or encephalopathy.
For example, one of the causes of autism may be a viral encephalitis, okay. That's an autoimmune encephalitis. That child who gets autism for that reason, so very much an overlap. I think, we have to look at each individual. Just because you have autism, regressive or otherwise, doesn't mean you can't get PANS or PANDAS. They're not the same in that way.
[0:10:21] SCOTT: Let's dig in a little bit more to your comments about the bug, as compared to the host response. How much of the illness in PANS and PANDAS, or the symptom presentation is the microbe versus the host response to the microbe? Is it more important to kill a bug, or to modulate the immune system to not be so over reactive, or hypervigilant?
[0:10:45] DR. O’HARA: Both are important. It's always a three-pronged approach. Treating the symptoms, treating the inflammation, or providing immune support and killing the germ, or treating the infection. Of those three, what's often left is treating the inflammation. If that's not done, then they won't get better. Because it's that secondary effect. In my practice, a lot of these kids have seen seven, 13, multiple people, or they've been dealing with this for years before they even realized what it is.
By that point, it usually isn't just about killing the germ. In those cases, we really try to do it herbally. It's about providing the immune support and the anti-inflammatory support while we treat the symptoms and help them to get better. If I had to choose one that was most important, it would be the inflammation.
[0:11:43] SCOTT: Many of our listeners will have heard of the Cunningham Panel, some may know of the Neural Zoomer from Vibrant. Are those key tools in your toolbox when we're looking at the exploration of that autoimmune-type response? Or what are some of the tests that you find most supportive of a diagnosis of PANS or PANDAS?
[0:12:02] DR. O’HARA: I first have to say, and I think why it is still so controversial, is that this is a clinical diagnosis. It's because of the set of symptoms that they have, OCD, tics, anxiety, handwriting deterioration, separation anxiety, behavioral regression, abrupt onset ADHD, and then the somatic symptoms of urinary and sleep disturbances are changes, like the kid that starts wetting the bed overnight. That is what I use.
If a child comes in with that abrupt onset of at least two of those, that's the diagnosis and I don't do anything else. I mean, I will look at their Strep titers, their Mycoplasma titers, their inflammatory markers, but all from a regular lab, because I'm still that girl from West Virginia. Those other tests are very expensive. If I can tell somebody that this is it. You don't need any other tests, then only the parent is driving, “I want the proof to get the data,” or maybe when I first started out, doing this work, the PANS/PANDAS worked 15 years ago. I got more tests.
Now I use either the Neural Zoomer, or the Cunningham Panel when I'm not sure, when it's a sub-acute presentation. They were strapped in the past, and maybe that was more acute and it was just missed, or I definitely think this is an autoimmune encephalitis. What type of antibodies am I going to see? They both are more accurate when a child is in a flare, though. If a child comes to me and they're in a good space, I don't do it, even if I want that information. I want them to come back, or get it drawn at another time when they are in a flare.
The CaM Kinase piece of the Cunningham panel, if that CaM Kinase is elevated at 130 or higher, it's almost pathognomonic for PANDAS. However, because Strep’s only one of them, you can have a normal CaM Kinase and it still be PANS. Mycoplasma is not going to raise your CaM Kinase and your other inflammatory markers, because they're not in a flare, may be fine. I really think about it hard before I do either one. We were part of the initial studies with some of these tests looking at it. We did a lot and it can be very helpful. Just because of the expense, I tried to pull back a bit.
[0:14:41] SCOTT: In my personal health journey, as an adult, I had a Cunningham Panel that did show some positives for this autoimmune type presentation. That leads me to the question, and by the way, in my case, that was when I had a mold exposure. What I'm wondering is, can the Cunningham Panel be useful in adults? Then the broader question, what are your thoughts on the potential for a PANS-like condition to occur in adults as well?
[0:15:07] DR. O’HARA: Right, great question. First of all, with PANDAS, it really should be pediatric, but many of those children with PANDAS also have PANS, because after that first Strep and presentation, they're then sensitive to viruses, or getting their teeth pulled, or a Mycoplasma infection. What really can be missed is Lyme, Lyme co-infections and mold. Especially with Lyme, Lyme co-infections and mold induced autoimmune encephalitis, that definitely occurs in adults. When you talk about what's the acronym, it's pediatric, abrupt onset neuropsychiatric symptoms.
Do I necessarily call it PANS? By the way, I am a pediatrician, because I don't like adults. Sorry. I personally don't see any adults. I have two wonderful naturopaths in my practice, and a wonderful dietician, all of whom do see adults. Absolutely, they're seeing these diseases. Would I call it PANS? No. I'd call it autoimmune encephalitis, due to whatever it may be.
[0:16:19] SCOTT: What portion of PANS would we suggest is genetic versus epigenetic? Is it common to find in the family history, other people with autoimmune conditions?
[0:16:30] DR. O’HARA: Very common to see other autoimmune conditions. It's in at least 64% of first-degree relatives. When you see it more genetically, is when you also go back to the grandparents, or the great grandparents and you hear a history of rheumatic fever, or there's multiple generations of autoimmune disease. The 64% of autoimmune disease is just in first degree relatives. That longer history is very, very common.
I think, it's a little bit hard to ferret out if it's a genetic or epigenetic. I think it's almost always both. Because why do one in 200 children, rather than 200 children who get a Strep infection go on to have PANDAS. Now in my practice, it's one and two, but in the general population, they say one in 200.
[0:17:22] SCOTT: Let's talk a little bit about the role of mitochondrial dysfunction in this population, PANDAS, PANS, autism. Is there a way that you found to assess for the potential of mitochondrial issues? Can we do that through organic acids, or other tools? Do you find that supporting the mitochondria is a needle mover?
[0:17:41] DR. O’HARA: Absolutely. Great questions again. Mitochondrial dysfunction is secondary, often, to many of these conditions. For example, autism. We now know that mitochondrial disease is about 4% to 7%, depending on the study of those children. Mitochondrial dysfunction is as much as 85%. It's because medications, like acetaminophen and Risperidone cause problems, cause dysfunction of the mitochondria. Germs, dysbiosis that may be causal in the autistic diagnosis also caused problems in the mitochondria. Anesthesia, other medications, illicit drugs. So many things can do that. Then of course, Lyme, Lyme co-infections and mold definitely do that.
In almost everybody, we're looking for mitochondrial dysfunction by history. Low tone, constipation, the brain fog one, certainly, and also, any regressive type behaviors, especially in those regressive autistic children. Mitochondrial dysfunction can be any symptom in any organ. Anything you have. I have a lot of kids with PANS that have presented with eye, like esotropia. They have strabismus out of the blue. That is often treated best with mitochondrial support, while you're getting rid of the initial trigger.
The tests I do, so first, history always. Second, physical exam. Do they have low tone? Do they have strabismus? Do they have any other findings? Seizures can be mitochondrial dysfunction. Then I will do regular blood work, regular lab, Quest, LabCorp, local hospital, whatever. For carnitine, acetyl carnitine, acylcarnitine panel, ammonia and lactate, better done fasting, and plasma amino acids, looking at the alanine to lysine ratio. I will do that in the regular labs. Then as you said, the urine organic acid is also a great tool looking at the Krebs cycle and the citric – also called the citric acid cycle, and carnitine function and all of that. I will also often do that test.
[0:20:13] SCOTT: I want to talk a little bit about the tonsils. When I was young, there was no problem finding an ENT that would take out your tonsils. It seems like nowadays, there's some difficulty in getting tonsils removed. Wondering how often does removal of the tonsils lead to symptomatic improvement? Is it a requirement even for some people? Then also, how might the tonsils be a focal driver of autoimmunity associated with Th17?
[0:20:43] DR. O’HARA: Absolutely. Th17 is one of the drivers of the inflammation. In children with PANDAS, you find very high levels of Th17 cytokines within the tonsils, if you culture for it. It's definitely research proven, and definitely can be seen if you can get a pathologist to do it. Going first to your first question, I highly recommend any practitioner that's doing this work, getting to know the people in their area. I have been lucky enough to get to know of several good ENTs, who get this, who will do this, and most importantly, will culture the tonsils and adenoids when they are removed.
I trust them to do the right thing. Because in my work, and in my anecdotal experience, it's a 50/50 proposition. Meaning, 50% of the kids don't get better and may even get worse and 50% do get better. I depend on that ENT to look at the adenoids, to do that good history, to decide for him or herself if they should be removed in that individual case. Now, certainly if a child has recurrent Strep infections, sleep apnea with low adenoids, they have other reasons for the tonsils and adenoids to be removed, those kids are going to get better.
Otherwise, I really work together with my ENT to make that decision. I think there are some physicians and other doctors who say, “I won't treat this, unless you get your tonsils and adenoids removed.” There are even others that say, “Don't ever get your tonsils and adenoids removed.” For my whole life, I've had a foot in both worlds, functional medicine and allopathic. I look at the child in front of me. I'd say, in our practice, a little bit less than 40% of the children have had a T&A. Of that 40%, because we're not getting in on all of them, of that 40%, at least three quarters do see improvement. We're making a very strategic decision of whether to do it or not.
[0:22:54] SCOTT: Your treatment approach and you mentioned this a bit earlier, consists of removing the inflammatory triggers, which includes microbes, decreasing inflammation to really support and restore the immune competence, or immune response, and also addressing symptoms with supportive therapy. Let's dig into some of those. Let's start with the microbes. You've mentioned a few of these Lyme co-infections, Mycoplasma, and Strep, obviously, but what are the primary infectious agents that you find as triggers for PANS and PANDAS?
[0:23:23] DR. O’HARA: I think it is regional. In our area, we see a lot of Strep. We see as much if not more Mycoplasma. We've got a lot of Mycoplasma in our area and then viruses. Of the Lyme co-infections, the most common is Bartonella, by far, with neuropsychiatric. Then we're always asking about mold. Once a child has PANDAS Strep-induced neuropsychiatric issues, as I said earlier, they are very likely to have one of these other issues, like viruses. When they get braces on, teeth pulled, when somebody else in the family gets sick with a Strep infection, and is – they may just have behavioral symptoms. Those are the most common microbes, but I will put all viruses, including COVID in there.
[0:24:17] SCOTT: That was actually my next question, which is, are we seeing an increase in PANS in the COVID era? Do we think that it's a common trigger for PANS?
[0:24:26] DR. O’HARA: Yes. We know that COVID causes a post-infectious inflammatory response. There have been several articles now published on PANS that is COVID triggered. We have seen this in many children, especially those who have been vaccinated and get COVID within a short time, especially in the two weeks after the vaccine. They, I think, have a double whammy. Unfortunately, as we are just learning about COVID, we don't have a lot of allopathic medications that are either safe or work. We use a lot of our antiviral interventions in general, herbally, antioxidants, etc., that tend to work well.
I think, I'm hoping that COVID will bring more light to this disease, because people are really seeing this. If we can get them to understand, yeah, but there are all these other microbes and issues that have been causing this for years. Let's look at all of them. It may move the needle a little bit.
[0:25:43] SCOTT: Given that some of these infections that you mentioned, Lyme co-infections, potentially others can be passed from mom to child during pregnancy, how often does congenital transfer set the stage for PANS and PANDAS? We know it needs to be an acute presentation, but can we have some smoldering predisposing factors that are already filling the bucket, so to speak, and then a final contributor that triggers that more abrupt onset?
[0:26:12] DR. O’HARA: No question and great way to put it, especially in the children with autism, that then go on to have an abrupt onset later, they may well have gestational Lyme, or Lyme co-infections. They may also have mold disease that nobody ever realized was a problem. Again, as I said, some of these kids that don't have an acute presentation when I see them, if you really dig deeper in the history, there may be an acute presentation then. Life starts before a child is even conceived. Whatever mom and to some extent, dad is dealing with in that first 1,000 years of life, which really begins three months before conception, and goes for the first couple of years. Anything that mom while she's breastfeeding, while she's pregnant in those first few months before is exposed to, inflamed by, can set the stage for later issues with any of these disorders.
[0:27:17] SCOTT: How do you balance the use of pharmaceutical antibiotics with natural interventions, like you mentioned, herbs? Can a child recover without antibiotics at all? What are some of your top natural anti-microbial interventions?
[0:27:31] DR. O’HARA: Right. The naturopaths in my office, because the state of Connecticut hasn't gotten smart enough to change their minds yet, cannot prescribe antibiotics. Certainly, whenever they see a child without me, they are not using antibiotics at all, and most of the kids get better. If I'm seeing a child in the very acute phase, I may well start with an antibiotic, like azithromycin. The main reason is azithromycin has less ability to worsen dysbiosis of other causes. We have a lot of Mycoplasma and treats Mycoplasma. In our area, the Strep is sensitive to azithromycin. I may start with that while I'm waiting for some labs to get back to figure out what the underlying cause is.
Then very soon after that, we will often switch to herbals. We will usually do an antimicrobial rotation, so that we're using several different herbs each for one to two weeks and switching to the next. We may start out with four of them. We may get down to two or three, because those work the best. Those are when the child really continued to improve. Especially when we're dealing with Lyme disease and Lyme co-infections, I almost always moved to herbals and often try to start with herbals, rather than antibiotics, because we're often dealing with more than one co-infection and multiple antibiotics is certainly not the way I want to go if I don't have to.
The last piece of it is the cost of all of this to families is very difficult. Sometimes because I can, I will start with an antibiotic to see a more abrupt change, to get the family onboard with understanding this, to show them the research. Because with PANS and PANDAS, there's a lot more very specific research for that disease in the literature than there is for anti-microbials. The anti-microbials have great research, but not specifically for PANS and PANDAS yet, at least as much as the antibiotics. I have many different reasons for often starting with it, but my bent is much more toward a functional medicine approach.
[0:29:57] SCOTT: Things like you talk about in the book: berberine, neem, usnea. Actually love; it's a great resource in the book when people get it that by different type of microbe, you'll have different herbs that have been most helpful. I think that's just gold. I want to talk a little bit about your thoughts about the percentage of children, or approximate number of children with PANS that you think do have a vector-borne illness contribution, Lyme co-infections. You already mentioned Bartonella. That's been my observation as well, that that maybe is probably the biggest player in vector-borne contribution to PANS. What are your thoughts about how common this is part of the puzzle?
[0:30:37] DR. O’HARA: Well, again, we live in Connecticut. This is where as Lyme originated. We've got a plethora of Lyme here. I would say, after Strep and Mycoplasma viruses, Bartonella’s next, most common. Then Borrelia and Babesia, and you got to throw mold in there. We are always looking for, we're always asking about it. With Bartonella specifically, the symptoms can be sore soles of the feet, or kids bunching up their socks to support their feet. That's something that happens.
The striae, the stretch marks that blanch, the neuropsychiatric symptoms, the anxiety, OCD can just be Bartonella, but particularly rage. Then of course, with any of them, there can be the joint pains, the muscle aches, the fatigue, the mood swings, all of that. With Babesia, we're also looking for air hunger. Some people come in with a tic. That really is the air hunger, and those are often Babesia, or night sweats. Between mold and Babesia, when we hear night sweats, we're looking for one or the other of those. Then with mold, the ice pick sensations. We hear that a lot in kids, as well as again, the brain fog and all the other symptoms.
We're looking for all of them. I would say, 90% of the children in our practice were at least looking for Bartonella. I'd say, in 60%, we're looking for all Lyme disease and Lyme co-infections, as well as mold. Then we always look for Strep, Mycoplasma and consider viruses.
[0:32:18] SCOTT: In that percentage where you're looking for Bartonella, how often are you able to confirm Bartonella is part of the picture?
[0:32:26] DR. O’HARA: At least 70% of those.
[0:32:28] SCOTT: Wow.
[0:32:28] DR. O’HARA: Yeah. It's very common, and very often missed.
[0:32:33] SCOTT: In the book, you talk about the fact that conventional medicine does not have a lot of options for treating viruses. You do mention amantadine, which was one of the medications years ago that I took, that lead to some serious depression for a few days. I really ended up having to stop. My thought process was maybe, it was really hitting some deeper viruses. I mean, I don't know exactly why. Wondering how commonly do use amantadine and does it commonly lead a child to higher ground?
[0:33:01] DR. O’HARA: Yeah. It is by no means a first line. Although, some of my COVID-induced PANS teenagers do very well with it. I think, there are two reasons for the reaction that you had, for example, and I have seen that. Seen it three times in my practice. There is documentation of almost a psychosis, or psychotic depression from amantadine. If I get something that bad, I automatically tell them to stop it. I will tell them that when they're starting it.
In some of them, it may be a milder form of a Herxheimer reaction. That's not what I think you were describing. That's a bad reaction that you have to come off up. If it's a milder, “I'm feeling more anxious. My symptoms seem a little bit worse.” I try to get them through the Herxheimers with ibuprofen, antihistamines, maybe a little charcoal. The amantadine is a medication that's been around for decades in the treatment of Parkinson's. I call it the treating, the getting stuckness. It really can help with the OCD. The kids that are really triggered, where OCD is their biggest symptoms and it's virally triggered, those kids may well get better with it, because it's also wonderful antiviral and a wonderful anti-inflammatory. For the large majority of viral-induced, I'm using antioxidants, herbals and then treating the inflammation.
[0:34:35] SCOTT: Let's talk then about some of the natural antiviral interventions that you use in your practice. One that I learned from your book and I've had lots of conversation now with the company and was excited to learn about was AquaLaurin. I'd love to hear a little bit about how you're approaching this with natural tools.
[0:34:51] DR. O’HARA: Yes. Well to talk to the rep about that, you do need a good hour, because they will talk your ear off. Monolaurin, or Lauricidin is a wonderful antiviral that has been around for many, many, many, many years. This particular form combines that with a biofilm buster that helps to break up. It was developed first as a biofilm treatment in large industrial tanks. One of the gentlemen in the company thought, well, maybe this will work for one of my friends and started studying it and testing it more against Lyme.
We have now found it to be a wonderfully antiviral, a wonderful antifungal, and antimicrobial overall. One quick story. I had a little girl with autism that definitely had yeast for years, definitely had viral mediation. She was much better. They were about to institute a new plan at school and she had to get some neuropsych testing. Well, it takes about three months to get that planned. When I saw her, I said, “Could you please just start this? Just use it for the next three months. I've just learned a lot about it. I think it may help her.” That's all they changed. Three months later when they finally did the neuropsych, she had lost her diagnosis.
Yeah. I mean, we all have stories like that. There are a lot of anecdotal things, but I think it is safe. Now one thing, don't ever show it to a patient like this over your computer, because it is a gel. I dropped one drop on my hard drive and lost my laptop.
[0:36:27] SCOTT: Oh, my God.
[0:36:27] SCOTT: Anyway, just a little caveat.
[0:36:29] SCOTT: Yeah, it is interesting. I actually got a bottle of it. It is interesting when you first see the consistency of it for sure. In the book, you talk about lots of things. Vitamin A, lysine, Astragalus, Andrographis, many others. I mean, again, this is such a great resource. I urge people to go and check that out. You also talk about lemon balm, transfer factor, some of the SPMs as well, or the pro resolving mediators. Let's talk a little about yeast and fungus. You do talk about fluconazole and terbinafine. Wondering if you use itraconazole at all, and do you find that there's overlap with yeast treatment and fungal colonization from water damage building exposures?
[0:37:11] DR. O’HARA: Absolutely. First of all, I think those that have water damage building exposure, mold mycotoxins may well do better with itraconazole, and I absolutely use it. The only reason I didn't mention it in the book is because most insurance companies do not cover it in the dosages that you need to get to. To offer that up in the first edition, at least, I didn't. The other thing is all of the Azole antifungals can interact with a lot of the medications that these kids get put on. Terbinafine may be the only one that doesn't interact in much the same way.
My favorite is still herbals though, and an herbal rotation. Sometimes with a biofilm buster, an enzyme 15 to 20 minutes before and then the herbal and rotating the herbals. I find that works really well. If that that fungus is also associated with water damage buildings, itraconazole is my first stop. Definitely have to consider both in treating it.
[0:38:22] SCOTT: Some of the natural interventions that you're drawn to for fungal and yeast support, what might those include?
[0:38:29] DR. O’HARA: Oil of oregano, grapefruit seed extract, caprylic acid, Pau D’Arco. This is also regional. For instance, my patients in Africa do much better with Pau D’Arco than oil of oregano. You got to know the region, too. Then enzymes to break it up. There are several different companies that make excellent enzymes. Then also removing it from the diet. A lot of these kids are craving sugar and carbs. I always talk about it as the enemy army. If you keep feeding the army what it wants, it's not going to die. You have to starve out the army, as well as putting the herbals which are your hand guns and things like that. Sometimes you need the heavy artillery, or the big tanks, especially if a child comes to you after being on antibiotics for years for PANDAS, or Lyme, or whatever, they may first needed an antifungal medication before moving on to herbals.
[0:39:27] SCOTT: We have talked about the contribution of mold illness, or biotoxin illness, chronic inflammatory response syndrome from water damage building exposures. The source community has suggested that Mycoplasma is higher in water-damaged buildings. I'm wondering, do you think that ongoing Mycoplasma exposure could be an association in part with exposure to water-damaged buildings at home, or at school?
[0:39:53] DR. O’HARA: Yes, definitely. I think in part, that is why we have more Mycoplasma illness in our area, because we have a lot – we're a shore community, or state. There's a lot of water damage in the buildings in this area. It's a pretty moldy environment with all the trees, and especially at this time of year. That may be one of the reasons we're seeing more Mycoplasma here than some of my colleagues in other areas of the country. There's definitely an association.
[0:40:25] SCOTT: I've mentioned that in the book, for each of the different types of microbes that play a role in PANS, you have a number of pharmaceutical and herbal options. I'm personally a huge fan of herbs as well. You mentioned colloidal silver in the book, and one of the things I wanted to get your thoughts on was, I tend to think of herbs as being somewhat intelligent, affecting more of the pathogenic organisms than the health promoting microbiome organisms. I'm wondering, do you think that colloidal silver is also selective in that way? Or do we need to use it shorter-term, because of any potential negative implication on the microbiome?
[0:41:02] DR. O’HARA: Excellent question again. I think, that is the one that we do need to watch, because it can be more like antibiotics in depleting the microbiome. Yes. When I use it, I only use it for a week, maximum two weeks, and then move on to other herbals. If it were the best player, because it does get Mycoplasma as well as Strep, I may come back to it in rotation, but I'm always watching the microbiome very carefully.
I come from two physician parents. My whole life was allopathic medicine, until I went through infertility. What I have learned over the last 30 years, I wish I had become a naturopath, because it is so much more healing and there's so much more potential out of herbs than out of antibiotics, for example, just because of the anti-inflammatory components. Then what you say and not depleting the beneficial flora within the gut, and just the overall better scope. Because so many of these children have more than one microbe that caused it. Just treating one microbe, you're usually missing a lot.
[0:42:19] SCOTT: In PANDAS, where we know that Strep is the trigger, what are some of the hidden reservoirs that you find for Strep? Can other family members play a role? How about pets and how common is it that you need to look outside of the patient to have a more comprehensive treatment response?
[0:42:36] DR. O’HARA: We always look outside the patient. First, there are many reservoirs, not just the throat, the tonsils and the adenoids. Think about the sinuses. I often see cryptic sinus infections as being mold, or yeast, but it can be Strep. Think about not just the gut, but the anus. In the literature, it's 7%. In our population, it's 20% of kids have rectal, or perianal Strep. Make sure you're looking for that. The red anal ring is a classic sign.
Then sometimes the urinary tract. Sometimes the skin. All of those areas. It is very common for a sibling more than parents or dogs, for a sibling to have a Strep infection and the index case, only the child in front of me only get neurobehavioral symptoms. I always encourage parents to look at the anus, to look for other signs of infection and to do a Strep culture if anybody else in the family does it.
Then I also encourage families to get everybody checked if the child is not getting better, to get Strep titers, ASO and anti-DNase B, to get Mycoplasma titers, IgM and IgG, and get inflammatory markers and make sure there aren't other carriers, as those blood tests, as well as the Strep culture. Then finally, close contacts. The best friend at school and other things that are going on. A child that gets braces placed and isn't brushing their teeth as well, may well be housing Strep within their mouth. We have to remember that the gut starts in the nose and mouth. We've got to treat the nose and mouth, whether it be with Xylitol, nasal sprays in the mouth around those braces, or oral probiotics to clean out that area.
[0:44:35] SCOTT: In the book, you say that while inflammation is the result of autoimmunity and these conditions, we have to address the inflammation. What are some of the top tools for putting out the “brain on fire”, as Dr. Mary Ackerley often refers to it? Then several listeners asked, what works best as a rescue for flares? I know you mentioned ibuprofen already, anti-histamines already. Interested in your thoughts on anti-inflammatory interventions.
[0:45:01] DR. O’HARA: Right. I will look at the child in front of me first. For example, if it's COVID-induced, if it's allergy induced, I may start with quercetin. If there are some lovely curcumin products that are very effective, the thing with curcumin is it you need to make sure that it's the most bioavailable form. I have been known as a brand stomp, because brand does matter.
[0:45:27] SCOTT: Feel free. You can mention any brands if you like.
[0:45:32] DR. O’HARA: NutaMedix makes a very good product called Avea, which is a well-researched bioavailable form of curcumin. It's very good for anxiety and as an anti-inflammatory, and can be used 10 drops every hour in those acute situations. That's one I love. There are many forms of quercetin that are very good and several in combination products. As antihistamines, I like D-Hist and Hista-Eze. Then, also resveratrol. Resveratrol is naturally occurring in Japanese knotweed, which is by far my favorite for Bartonella and Borrelia. Also having the resveratrol makes it very effective. That AquaLaurin we talked about has one form that has resveratrol in it. That's another one that's got anti-inflammatories in it. Those are my top ones.
I will use ibuprofen, because I haven't found any herb, antioxidant and natural anti-inflammatory that can work in a flare, as well as ibuprofen. I will use that and then try to move on to all the others. SPM active, or SPM supreme are also wonderful, specialized pro resolving mediators. I very rarely use steroids. I can count on two hands and 25 years however many times I've used it. I think there usually is the worsening, because these kids have multiple dysbiosis. It especially feeds the yeast dysbiosis, but also clostridia.
I think roid rage is a real thing. Again, I think that's because of dysbiosis. Only when none of these other things have worked, or I have a family that's so allopathically minded, that's the only thing that they'll do, will I do that. It is helpful in saying the child gets better with steroids may well be the child that needs to move on to IVIG.
[0:47:27] SCOTT: Are these conditions more Th2, Th17-dominant conditions? Do we generally see a lack of Th1 and Treg presence, or activity? What are some of the tools that you found most helpful for immune modulation?
[0:47:42] DR. O’HARA: Yes, that's absolutely true. Again, another great marker. I do find that they are Th2 and Th17 dominant. I can't say that I feel that any specific herb, and I'm happy to be educated, or nutraceutical has been better than another in those cases. It's more the history of the child that has driven me. I think all of these kids are Th2 – not all. A large majority are Th2 and Th17 dominant. In the pharmaceutical industry, I have found cromolyn sodium to be very helpful. Hydroxyzine, cyproheptadine and ketotifen specifically in those kids. Then when I look at antihistamines, I'm also looking at those combination products in the quercetin in those kids.
[0:48:35] SCOTT: Yeah, it's interesting. In the immune modulation realm, I've been really interested in this, in the COVID era. I would say, black seed oil has been one that's come up a lot for me is very interesting. Then a lot of people seem to, and maybe in kids this may not be as appropriate, but a lot of adults, low-dose naltrexone seems to be really helping with some of that immune modulation.
[0:48:56] DR. O’HARA: Very good point. we do use a lot of low-dose naltrexone. We will often start with a cream, again, because the kids come in with a lot of gut problems. We're trying to avoid the gut initially, until we get it a little bit better healed, but we will also do it in very low dose. Yeah, low-dose naltrexone. I'm only becoming familiar in using more than black seed oil, and it's a great one. I think that's a wonderful point. I'll take that one home.
[0:49:25] SCOTT: I know so many people over the years that have talked about Th1, Th2, Th17, Treg. The challenge as I've understood it has been that there weren't really any fantastic ways to look at this. I know the Cyrex Lymphocyte MAP is a newer tool in this realm and wondering if that's something that you've explored in your patient population.
[0:49:44] DR. O’HARA: Certainly, in in the same way I use the Neural Zoomer and the Cunningham Panel, if I'm not sure and I want more information. About 30% in this group will have immune deficiency. Those are kids specifically that do better with a specialized pro-resolving mediators. I think there is good research that the Th17 is high in these kids. You're right. I haven't quite found a test that I believe in enough, though I love Cyrex and we'll use them. Again, it's only when things aren't getting better that I turn to it.
[0:50:25] SCOTT: You are a leading expert on the use of Helminth therapy for immune modulation, which really came out of your work with your mentor, Dr. Sid Baker that you mentioned. These HDCs are, as I understand them, a type of tapeworm that are found on grain beetles, that used to – this was very interesting to me, used to be part of our diet over a 100 years ago. Maybe another reason that we're seeing so much immune dysregulation. Wondering if you can talk to us about how Helminths can balance, or modulate the immune response, and what's the general response to this HDC therapy in your patients? Are there any potential side effects we need to think about?
[0:51:04] DR. O’HARA: Yup, great question. I am a believer in it, in that I think it induces immune tolerance. The idea is that evolutionarily, we all used to dry our grains and large fats. When we dry them without processing them, there were grain beetles there and green beetle worm eggs. We always ate that. When you look at the rate of autoimmune disease, you have to get over the ick factor, Scott. When you look at auto immune disease, it is much more prevalent in industrialized societies than in pre-industrial societies. This is one of the factors that is considered important in why that may be.
In industrialized society, it's not just about antibacterial soaps and antibiotics, it's about wearing shoes, using toilets, not living in the dirt as we all should all the time. This brings back in that grain beetle worm egg that doesn't cause an infection ever in anyone, and should not cause an infestation, especially in adults. An infestation is where the egg hatches and becomes a worm before it's excreted out. What instead happens is the immune system sees it, says, “Aha. I know this.” Induces that immune tolerance.
Quick little story. William Parker is a wonderful researcher at Duke. He used to catch wild rats as a little kid behind restaurants to make money. When he was a PhD, when he was first trying to get started, didn't want to use all his money for lab rats, so went and caught wild rats. He found that his wild rats were smarter, learned the mazes faster, were healthier, and had less rat OCD and anxiety. That's how he first started studying this.
It's used in inflammatory bowel disease. It's used in other autoimmune diseases. Is very safe in adults. In children, there's a one in a 1,000 risk of the egg hatching before it's excreted. I am very careful for who I use it in. I do not use it, although it is a mutualist and not a parasite, I do not use it in children that I think have parasites, that have worsening of behaviors around the full moon, or have actually grown a parasite in the stool, until I fully treated that. I will not use it in children that are constipated. Because if you're constipated, you're less likely to excrete it before it hatches.
I will not use it in any children that are on any immunosuppressive drugs, including IVIG. Unless their IVIG is so spread out that we can do it in between. I will no longer use it on nonverbal children that already have gut problems, because they can't tell us. The infestation is very easy to treat. It's one day of Biltricide that will never change. These guys don't develop sensitivity, like bacteria and other things do. It's really easy to treat. But a nonverbal autistic child, for instance, who already has gut problems, that causes me pause.
If a family can't get IVIG, if they can't afford it, they can't get their insurance to cover it, this is something I will consider after, and this is where for instance, that Cyrex test may come in, after I prove they're not Th2 dominant to too much of a degree. Because that can make it also not work as well.
[0:54:38] SCOTT: That was going to be my next question. In the book, you mentioned that these HDC stimulate Th2. It sounds like, in those children that you already think are Th2-dominant, that there's some things you're doing first to do the immune modulation, so they then can better tolerate this type of an intervention.
[0:54:55] DR. O’HARA: Right, right. It also is an intervention that definitely causes a Herxheimer reaction. I urge people to, if they're going to consider it, to do it with a practitioner. With everything we do, I urge people to start low, increase slowly and get to the full dose after you've done it in that way. A lot of people want to jump in with two feet, and they'll get a bad reaction. Part of that is, is because you need to build up to that.
[0:55:27] SCOTT: Aside from these parasites, or HDCs that we're intentionally ingesting for purposes of immune modulation, might it be the case that other parasites that we get exposed to also have some immunomodulating properties? Should we always be trying to kill every other parasite that might be in our bodies?
[0:55:47] DR. O’HARA: No. Not at all. We should not be trying to kill them. There are some that are definitely problematic. Certainly, if they're causing diarrhea, they're problematic. What I first look at is, is this child having symptoms that are related to parasites? If they’re teeth grinding, butt grinding, and having bizarre, out of control behaviors around the new and full moons, those are kids that I think need to be treated, even if it's Blastocystis hominis, which in most of us, shouldn't be treated. We're fine.
Again, it's our individual ecosystems that are so depleted. If we try to kill every bug in our guts, we're doing the absolute opposite of what we should be doing. It's fertilizing. We need to promote all types of germs, including yeast, parasites and clostridia, but in balance with the beneficial microbes, too.
[0:56:50] SCOTT: These SPMs are pro-resolving mediators that you've talked about, they're shown to inhibit the NLRP3 inflammasome. Melatonin also does this as I understand. I'm wondering if you find in some of these kids that melatonin can also be helpful with modulating the inflammation?
[0:57:08] DR. O’HARA: Yes, absolutely. We saw that with COVID. There's good research that melatonin helped to decrease the inflammation with COVID. Melatonin is often one of our first line interventions, especially if a child has sleep problems, but has multiple benefits as an anti-inflammatory, as well as a calming agent.
[0:57:28] SCOTT: Sounds like, you've come across some of Doris Loh’s research, I'm guessing, because that's where I read about it, too.
[0:57:33] DR. O’HARA: Yeah, definitely.
[0:57:34] SCOTT: Is there a place for peptides in immune modulation in PANS and PANDAS, things like Thymosin Alpha 1, Thymosin Beta 4, BPC157, KPV? Any of those that are helpful in this population?
[0:57:48] DR. O’HARA: It's a great question. I think, in all honesty, I think I'm a little bit more of an outlier there than most of my colleagues that treat these kids, because I have yet to see a real remarkable improvement. But many of my very bright colleagues, Scott Antoine in the Midwest, Tom Moorcroft here in Connecticut, have had very good success with these peptides. I've tried many, and I'm learning more and more, and that's my big plan over the next six months is to give it another really good trial. Because the first time I did it, mainly with a thymosin alpha, I didn't have the effects that I wanted to in many of those kids. I'm reinvigorating myself. I do think it could be very helpful.
[0:58:42] SCOTT: How about low-dose immunotherapy? I know Dr. Amy Derksen, for example, has found that helpful, as have others in Strep and dealing with some of the contributors to PANS as well. Is that something that you've used in your patients?
[0:58:56] DR. O’HARA: We don't do it in our practice, only because Darin Ingels used to be right down the street and his practice is now Jaquel Patterson's. He's out in California. We refer to them quite frequently. We do find it helpful. Again, I get a population that is dipping their toe into functional medicine and I bring them in, but they come to me, because I have those other initials behind my name. I have to urge them to do LDI, rather than start with that because of what they're coming to see. That's part of the listing and treating the individual child.
A lot of times, I will tell other allopathic physicians, neurologists, psychiatrists that say, “Why are you doing this? This is ridiculous. Functional medicine never works.” I'm like, “Let me develop a relationship with this family.” If they really need what you're offering, they'll come back. Let's just give it a try. I say to the families in the same way, LDI can be very effective. Let's give it a try.
[1:00:04] SCOTT: I was just having a conversation with Dr. Ingels right before we started our conversation. He's somebody I definitely respect a lot as well. Oxidation is part of the body's response to infections. In the book, you talk about the importance of antioxidants, like vitamin A, and C, D, zinc, resveratrol, melatonin, glutathione. Do you think that these have to be minimized early on when we're doing the microbial management stage of recovery? Can we have too many antioxidants and essentially, negate the body's own oxidative response to some of these pathogens and lead to other problems, maybe even cancer, in some cases?
[1:00:44] DR. O’HARA: Great questions. Again, I think it's very individualized. If a child comes in with very low vitamin D levels, and I will check that at the initial visit every time, or very low vitamin A levels, then they need it. I will follow those levels. NAC, for example, which is one of the building blocks of glutathione has 17 studies behind it in the treatment of OCD. What's the problem with NAC is that when you open it and expose it to the air, it oxidizes. That oxidation absolutely can negatively impact them. I do believe that as long as it's individualized, antioxidants are necessary. You're absolutely right. We need to make sure it's only as necessary, and that we're treating the microbes and the immune support first, in almost all cases.
[1:01:38] SCOTT: Do you find that the majority of children that you work with tolerate glutathione? I know in the Lyme and mold illness population, some people can be sensitive to it if they're dealing with sulfur pathway issues. Wondering in those children that maybe don't tolerate it initially, does adding molybdenum increase glutathione tolerance?
[1:01:58] DR. O’HARA: It does increase glutathione tolerance. Absolutely. Occasionally, I will give IV glutathione at their initial visit when I'm drawing their blood, if I really think that they are impacted in that way, either because of their DNA methylation, or something else from their history. If they then go on to have a negative reaction, I will always find their molybdenum low in their RBC minerals. That is very true. I think that we have to again, look at those children and not do it for everybody, because certainly the kids where their mycotoxin may be more ochratoxin-driven, as opposed to gliotoxins. Those kids won't tolerate glutathione as well. We need to look at that in their tests. Sometimes NAC is a first line, but glutathione is not usually a first line in our practice till we get more studies and understand this kid better.
[1:03:03] SCOTT: You've mentioned using antihistamines earlier in the conversation. How much of the inflammatory burden, do you think overlaps with Mast Cell Activation Syndrome? Maybe even glial activation? Sounds like, antihistamines do provide some benefits in some cases. Do you find that early on, that maybe we have to withhold some things like bone broth, or fermented foods until that mast cell component has been addressed?
[1:03:31] DR. O’HARA: Look, mast cell activation is part of our inflammatory response. We've seen that especially with COVID. We will see mast cell activation and most of these kids. I have a section in the inflammatory chapter all on mast cell activation. Do they actually have mast cell mediated disease? Those are the kids that really have the flushing and more symptoms. I think, if they have mold disease, then they usually have mast cell mediated disease.
I do feel that in that anti-inflammatory realm, we need to use those antihistamines more, because the mast cells are a bigger factor. I think, it's almost become sort of, “I have mast cell activation syndrome.” Well, let's back up. You have mast cell activation. You just had your PANS induced by COVID, or allergies, or whatever. That's one thing, and let's treat that in this way, but let's reserve judgment that this is really a mast cell mediated disorder that's going to be long lasting. It's like that mitochondrial dysfunction. It's not all disease. There is that that issue, but we have to ferret out which is which.
[1:04:47] SCOTT: I a 100% agree. I tend to think of mast cell activation as a symptom of the underlying problem, or trigger, or as Dr. Richard Horowitz would say, the nail in the foot, but not in and of itself, the underlying trigger. I love how you said that.
I want to talk a little bit about diet. In the book, you talk about low histamine, low glutamate, low phenol, low salicylate, oxalate, the simple carbohydrate diet, the GAPS diet, low FODMAP. I know that everyone is going to be very individual when it comes to diet. In all of the people that you've worked with, are there a couple of diets that are standouts, or not?
[1:05:28] DR. O’HARA: Yes. First of all, 20% of children with PANS and PANDAS will present with restrictive eating disorder. We have to be careful about what we're changing in the diet very early on, especially in those teenage kids. In those kids, I will really try to just push an anti-inflammatory diet, which in me, we should all be eating more, more vegetables, some fruits, less carbs, more good proteins, and more oils, and eating in that way. That's my go-to overall.
I think, every child that comes into our practice with autism should at least on a trial of gluten-free and casein-free for three months 100%. A doctor once said to me, do whatever you need to do, so that you have no regrets five years from now. I say to parents all the time, as a practitioner and as a mom, if I didn't do it, I would regret it. That is universal. In the child with dysbiosis, particularly yeast dysbiosis, or even mold mediated disease, I will talk about gaps and specific carbohydrate diet if they're not getting better, and really try to focus on removing all of those things that may induce that in their gut. Those aren't long-term diets in my opinion. Those are nine-month diets.
I do think we have to watch, especially because of the histamines and all of that in our inflamed kids, really pushing bone broths and fermented foods early on in these children. I might add that later, once their guts are in a little bit better shape, but I will almost always encourage parents to make their own bone broth, because I think some of the MSG and some of the problems with the bone broth comes from the commercial branding. We have a dietitian in our practice, and we try to get so many of our children.
I have two new patients I'm seeing tomorrow. One of who I think needs to be on a failsafe diet, which is the free of amines, low salicylate, flavor enhancers, all of that. The other of whom I think needs to go on a ketogenic diet. It is individualized, but those are my overall parameters.
[1:07:48] SCOTT: In our last section of our conversation, we're going to talk a little about some of the symptom management pieces. Interested in what tools you find most helpful for OCD, for anxiety, and are these potentially also the result of neuro-inflammation?
[1:08:04] DR. O’HARA: Absolutely a result of neuro-inflammation, particularly the tics in the OCD and the anxiety. No question. And the brain fog. I mean, all of them are neuro-inflammation. Again, three-pronged approach, and treat the inflammation has to be part of it. As I said earlier, NAC has the most studies with treating OCD, skin picking, gambling, trichotillomania, all of those OCD types of things.
I use a lot of herbals, a lot of adaptogens in these kids with anxiety and tics and OCD. Things like ashwagandha, rhodiola. I'll use lemon balm, passionflower, nervine tinctures, as well as adaptogens. If a child doesn't come to me on SSRIs, we do use 5HTP, because it can be very calming for all of those symptoms. When it comes to the brain fog, which is as you and I both know, a grab bag symptom, that is almost always mitochondrial dysfunction, inflammation, and a lot of those kids have mold or Lyme, and we will definitely look for that in those.
[1:09:18] SCOTT: As someone who myself has a history of a little bit of OCD, it's funny, I was sitting here picking my fingers, as you said skin picking.
[1:09:26] DR. O’HARA: It is.
[1:09:27] SCOTT: Oh, well.
[1:09:28] DR. O’HARA: My son was 18-months-old and he was afraid of mascots. I left him with my sister for a weekend and her husband worked for a local hockey team. He was the general manager. It happened to be the hockey team’s mascot’s birthday. Because my son was with her, he was surrounded for a weekend by 18 mascots. He had no skin left on his fingers. That goes back to that epigenetics, genetics. I have a little OCD. My son probably had a little anxiety early on. He got this disease. It's all part of it.
There are many, many different nutraceuticals I'm not mentioning, that are also very, very helpful. B vitamins, great for brain fog. Inositol, which is called a B vitamin, but really isn't. The biggest problem with that is the high dosages that are really needed up to 18 grams to make that effective. Yeah. There are some products that are now on backorder that can be really helpful. GABA, anti-glutamates, can be really helpful for OCD. There are a lot of them. I rarely use medications, because most of these kids can get better with a combination of nutraceuticals.
[1:10:51] SCOTT: I use my OCD to my advantage.
[1:10:53] DR. O’HARA: Exactly. So do I. It’s why I get so much done.
[1:10:57] SCOTT: You talk about tics, and here we're talking about T-I-C-S, for people listening, not ticks as in vector-borne conditions. The potential for microbes to be a contributor to, or trigger for tics, pesticides, you mentioned in the book as well, wondering if you've seen toxoplasma playing a role in some children that are dealing with tics.
[1:11:19] DR. O’HARA: It's very interesting. I think, I probably don't test for it enough, but I have seen it. Again, I'm not treating it with medication. I think I need to look for it more, because it is definitely there. Microbes in general, can be a cause of tics, and the gut has to be healed first in addition to all the other things I talk about in treating tics. With that gut goes lifestyle. It's not just about the diet. It's about the yoga, or the meditation, or the mantras, or all of those things that that calm the nervous system.
[1:11:58] SCOTT: I guess, my mentor, Dr. Dietrich Klinghardt, probably would not be happy with me if I didn't ask how important is reduction of EMFs in dealing with some of these symptoms in these children?
[1:12:09] DR. O’HARA: No question. That, especially during COVID was a big driver in a lot of our anxiety, OCD and tics. We spend a lot of time talking to parents about decreasing screen time, about decreasing EMF exposure, particularly in the bedroom. These kids are going to bed with their iPhones. They're using digital devices in their bedrooms, and I'm like, “Okay, even if you're using something like that to get to sleep, because you got to do this app to get them to sleep or whatever it is, turn it off when you go to bed.” Put it on a grounding – use earthing mats. Think about what's on the other side of the wall of your child's bed. Is it the refrigerator? Is it the TV? Move it. So much of that is important in our children's lives. Going back to one of your first questions, one of the drivers for why so many more of our kids are sick, because the exposure, we're now in 5G. When I started, we were at 3G.
[1:13:13] SCOTT: I was recently surprised that I bought a ceiling fan for my bedroom and didn't think much of it and noticed on my cellphone that the ceiling fan was broadcasting Wi-Fi. Not just trying to connect to Wi-Fi. It was actually broadcasting its own Wi-Fi network. I very quickly took care of that, because why would I want to sleep under that? It just doesn't make sense.
[1:13:32] DR. O’HARA: Exactly, exactly.
[1:13:34] SCOTT: Constipation in my mind is so critical for detoxification. The vagus nerve can play a role in constipation. What do you find are some of the more common causes of constipation and tools to get with the flow?
[1:13:48] DR. O’HARA: Yup. Oh, nice. I like that. Polyvagal theory, by the way, is very important in these kids with anxiety, OCD and tics. I really like the work of Stephen Porges and others that have looked at that, so that's another topic. But constipation has to be treated first. Sometimes it's the germs that don't want to get out. They’re loving the warm, moist environment where they're living, so they induce constipation. Others, like clostridia want to smear all over the place and you get stool smearing, because as Derek McFabe said, you want that microbe all out there.
Constipation can be driven by forced potty training. Can be driven by mold, definitely. Can be driven by mitochondrial dysfunction by the microbes and many different things, but it has to be treated especially before antimicrobial treatment. Because otherwise, you'll just get a more significant dye up. We use a lot of aloe in the treatment of constipation. A lot of magnesium. Magnesium is another one I didn't mention, especially for tics, but also anxiety and OCD. We use a lot of fluids and fibers. Sometimes vitamin C, although vitamin C can be activating to some of our kids.
Then good physical manipulation This is where the best form of parenting bribery can come in. Sitting with the school to be in the best position. Because what do we do to a lot of these little kids? We put them on the toilet with their feet dangling. They're going to get constipated just by sitting there.
[1:15:26] SCOTT: I love you mentioned the magnesium, but you also mentioned in the book that even Epsom salt baths, which are magnesium sulfate, that those can be helpful in dealing with constipation as well. My mentor, Dr. Neil Nathan, recently turned me on to the TTFD form of thymine for dysautonomia as mitochondrial support. Many other conditions, the work of Dr. Derrick Lonsdale and Dr. Chandler Mars. Wondering if that's something that you've explored in this population.
[1:15:54] DR. O’HARA: Absolutely. Thiamine is one of our treatments of mitochondrial dysfunction. I think the TTFD formulation is much more bioavailable. Neil is right, as usual.
[1:16:07] SCOTT: I love it. Just this whole conversation, I'm having so much fun. I just love you. In adults with Lyme disease and mold illness, limbic system impairment can play a major role in many symptoms, including some of the dysautonomias. Wondering if you do any interventions in the limbic system realm in children, and what are some tools that maybe can be used in this younger population?
[1:16:31] DR. O’HARA: Yeah. It's an interesting question, because I think a lot of, especially the adults who may have been dealing with it for much longer have a lot of adrenal insufficiency and limbic issues. The kids, not quite as much, although the teenagers much more. I think, the even more natural interventions, the going back to doing the yoga, to doing the polyvagal theory treatments, the listening therapies, the meditation. Kids can do that. I also am a big believer in treating dysautonomia in general with fluids, salt, which is often missing, and physical manipulation. I think, the limbic system in particular does very well with chiropractic manipulation, with cranial sacral manipulation. Even with some of the isometric, isotonic type of exercising. I think those are all really important.
[1:17:35] SCOTT: The listening therapy, since you mentioned Stephen Porges’s work with polyvagal therapy, I'm guessing that's the safe und protocol that can be helpful for some of these kids.
[1:17:42] DR. O’HARA: Yes.
[1:17:44] SCOTT: Beautiful, beautiful. Wondering if you found any role for FMT, or Fecal Microbiota Transplantation. We talked a bit about the microbiome and how the HDCs potentially help with modulating the immune system. I've been on the fence about FMT, personally. I know there can be some pluses and also some potential side effects. What are your thoughts on that?
[1:18:08] DR. O’HARA: First of all, in my opinion, the best FMT is a relative that has similar genetics, but has never had antibiotics, has never been vaccinated and lives a healthy lifestyle. Pretty hard to find.
[1:18:22] SCOTT: Good luck.
[1:18:23] DR. O’HARA: Yeah. The second thing is fecal transplant in this country, at least, really just hasn't happened since COVID. It really is only available in good places for clostridia. Then it's one and done. If you have clostridia-resistant, or clostridia that is resistant to other treatment, FMT can be life-changing. It's one and done.
For other gut problems, particularly autism, remember that just like our stem cells rejuvenate every 120 days, our stool rejuvenates every three days. You do a fecal transplant, you may make some changes. But three days later, you may be back in the same spot. Most of my families that have had success with it, have had to repeat it many times. Then, are you really doing the right thing? Can we not go back and do this with diet and lifestyle changes?
Sometimes I'll have families use it and they'll see a benefit. They'll say, “Okay. That means we got to work on the gut.” Let's go back and do all these other things again. All of us in our world today are looking for quick fixes. In the world that I live in, it's always a marathon, not a sprint.
[1:19:50] SCOTT: Totally agree. Yeah.
[1:19:52] DR. O’HARA: If you treat it as a sprint, they're not going to get better.
[1:19:55] SCOTT: Yeah, I totally agree. Even you mentioned stem cells. That's been my personal experience if we're looking – I did stem cells many, many years ago in Panama. I didn't personally find it to be helpful at the time. I think a lot of times, people that are interested in stem cell therapy for systemic healing. Now if you have a bad knee, or bad hip or something like that it maybe makes more sense. I think when we're thinking about stem cells, a lot of times we're thinking, okay, well, if we just do the next expensive thing, it's a get out of jail free card, and I don't have to do a lot of these foundational things, like you're talking about. In my experience, stem cells haven't been a huge winner in adults with Lyme and mold and those types of things, but wondering if that's similar in your patient population?
[1:20:41] DR. O’HARA: Absolutely. Exactly what you said. I think there is that placebo effect, that the more money you spend, the more you want something to work. The more invested you are in it. I think that when you look for that quick fix, I have yet to see a patient that has had a long-term marked improvement, except for a couple that did an autologous transplants at Duke, etc., under research studies. I've seen several with transient improvements. Then, they go back and spend another 10,000, to do it a second time and a third time and a fourth time, until they're either out of money or out of patients. I urge any of my patients, or anybody else that has had that remarkable turnaround to let me know, because I haven't seen it.
[1:21:34] SCOTT: Given the impact that PANS and PANDAS have on siblings and parents, what do you recommend to support the health of the entire family unit?
[1:21:43] DR. O’HARA: Yeah. Well, my colleague, Dr. Wells, wrote the children's book behind me, which is really, it's Super Sam, and then the fight against PAN and PANDAS. It's really for the siblings. Because we have to keep in mind that all the children in the family need to be treated. Number one, this is genetic and epigenetic. Keep that other child in mind, because we have several families, where there's an index case, but then the other sibling and the other sibling also develop not the anxiety of looking for it every moment of every day. But, also very important to carve out time with each child as a parent, and to have special time with the non-index child.
Then lastly, to not feed the beast. That is really important. That child with PANS is still a child in your family and needs to have chores, and needs to have responsibilities and does not need to be coddled. My son may say, I push that too hard. That's okay. He's getting his PhD right now, so maybe it worked. Anyway, it is one of those things that I'm very passionate about, good parenting as well. I actually sent my son a text the other day to thank him for teaching me how to be a good parent in these circumstances. Because I was realizing several of the portal messages, the EMR messages I was getting from parents had nothing to do with medicine. I had just given them a parent technique to help their kids get better.
I always say, the greatest instrument we have in our office is a tissue box, really, because it's about listening and hearing what the parents and the child are struggling with. Being a resource. I have lots of kids with autism, I haven't helped. I said to one the other day, “Why do you keep coming?” She said, “You're the only one that listens. I come to just talk for an hour.” It’s so good.
[1:23:48] SCOTT: I think it's so important, having myself dealt with chronic Lyme starting, gosh, 20-plus years ago, I finally was diagnosed 17 years ago. Just that invalidation that you go through, having so many people in the medical profession tell you that you need to go to a psychiatrist and all of those things. Then I think, just in some ways, I think that PANS and PANDAS are where chronic Lyme was 15 years ago in terms of not a lot of people really understanding it, accepting it, believing in it. There's so much invalidation of parents and children.
I think in the Lyme community, it's not perfect, but it's advanced quite a lot. I mean, anyone you talk to now knows someone that had Lyme disease. I think that PANS, PANDAS and Morgellons is another condition that's similar where there's just a lot of invalidation. It's wonderful that people like you and many other amazing people are moving PANS and PANDAS forward, so that people can get that validation and get past that and get to finding the solutions that are going to help heal their children. Once a child has recovered, what does maintenance look like? How do we address potential exposures in school environments, like a Strep exposure, or a mold exposure that could retrigger that immune dysregulation? Are some kids on prophylactic antibiotics, or herbs? Then do many of these children go on to lead completely normal, healthy lives? Or do they have to be like I do? Do they have to be careful about their external environment, about mold exposures, about chronic infections, those kinds of things?
[1:25:28] DR. O’HARA: All great questions. I think, first of all, we all should be vigilant, and these children are susceptible. I think the earlier we treat them, the better the outcome. A lot of the kids that have PANDAS and are treated early and get better quickly may not have that lifelong issue. Those that don't get treated quickly, or certainly those with Lyme, and co-infections and mold, we always have to be alert to that.
I think, one of the things is once a child gets better, what's most important is not just to stop everything like that. A lot of allopathic physicians, even the ones that get it will put kids on antibiotics, they get better, and then they'll just stop. That's it. Goodbye. If you're on antibiotics, you need to wean them, particularly the azithromycin. You can go from one per day to one per week. Several kids will do that. That's when we're adding the herbals to get them off the antibiotics at all.
Where if we started with herbals, we may try to wean down the dose. We will often do this for at least a year, sometimes two years after the symptoms have resolved. The literature shows that we should continue prophylaxis in children that get this disease in early in life till puberty, and those who get it around puberty, or after puberty till age 21. Because that's when the blood brain barrier closes. They need to have some support during that period of time.
Many parents stop it, because of either the expense, or the kid won't take it anymore. Then they'll get a recurrence, and the second. third recurrence can be much worse than the first. Especially if that happens in the teen years and they're less likely to be on target with what they're doing, those kids will linger well into adulthood and are much more susceptible later. It's about weaning the interventions and it's about figuring out what the trigger is, and letting the parents know what the other triggers may be. You get bit by a Lyme tick, contact us immediately, so we can tell you what to do. Homeopathically, naturally, or if you have to an antibiotic.
If you get a viral infection, or get exposed to somebody with a virus, we have an acute viral protocol that we give people at their first visit to start as soon as they get a virus. We talked to them about when they get braces on, we talked to them about mold, all of those things so that they may be prepared. I think we have to do a better job of providing that in writing too, because most people in that first visit, which for us are two or three hours long. They're overwhelmed by the end. They're trying to get at, what do I need to do now? Not, what if later on. We need to keep getting that information out there, so that people do remember what to do if something else triggers it later.
[1:28:26] SCOTT: Let's talk about some resources that parents and even practitioners can find to really help them understand this condition, to really support their recovery journey. Where can they find more information? I understand you also are putting together a number of resources besides your amazing new book, Demystifying PANS/PANDAS, which I really encourage everyone to read. Tell us a little bit about some of the resources that are available and those that you're creating.
[1:28:52] DR. O’HARA: The ones that I'm creating in addition to the book are a mentorship program, where I will mentor practitioners of any ilk. I learn from them, too. Certainly, naturopaths, DOs and MDs, but chiropractors, therapists, teachers, nurses, nurse practitioners, physician's assistants, anybody that can care for and wants to learn more about this disease. That's one-on-one, or in a group setting. I also have live Q&As going on. Come to wonderful podcasts like this one to spread the word. Then I have a membership program, which is something that you do on your own time, which has 30 different videos. Every year, we'll have 30 new ones about how to do the exam, different products that I use in nutraceuticals and herbals, different medications and includes the dosages and things like that.
Parents can certainly sign up for that, too. Although, I encourage parents to really work with a practitioner. There are many wonderful practitioners across. They may not all be MDs, but again, I am in love with naturopathy, and really feel there's a tremendous amount that people can do working with other practitioners and working in nutraceuticals and herbals and not medications. There's a lot.
You can go to my website, which is just drohara.com, and find out all of that. On my website is also other wonderful books. There's a wonderful one coming out by Joe Krista, who we both know. There is also children's books, like Dr. Wells, books for teens on my website. There's one about climate change, where one of the central characters has Lyme, and he's just being treated with psychiatric medications, until somebody realizes that this is Lyme disease, and let's do something different to help this kid be able to do all the other projects that they're trying to do for climate change.
There are a lot of those resources on my website. There are also a lot of different groups, for autism, certainly TACA and NAA for practitioners learning about autism. Med MAPS, which is Medical Academy of Pediatrics Special Needs. Certainly, ILADS for Lyme, certainly Neil Nathan's book, Toxic, for mold disease, and using all of those different resources. Then parent groups. I do think the chat rooms in the parent groups have a lot of validity, and a lot of purpose. I caution somebody in using something they've heard about in a chat room, without talking to a practitioner. I think, you need to give it the sniff test with somebody qualified to know more about it and to be a little bit more removed, even though most of us in the field have dealt with it personally, either ourselves, or in our own children.
[1:31:49] SCOTT: My last question is the same for every guest. That is, what are some of the key things that you do on a daily basis in support of your own health?
[1:31:56] DR. O’HARA: Well, I live by the water. The water is healing for me, it's calming, and it's also empowering. I go for a walk on the beach every day. I do yoga every day, including planks and savasana. I try to end with meditation, but I think, I do the mantras really well. For me, it is always, “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” Particularly, the serenity piece and breathing.
I can't tell you how many times I need to take a deep breath, whether it be alternate nasal breathing, or just, 7-1, whatever it is. I used to be a runner, but my knees and my back, don't let me do that. Now, I've given myself more time to walk and to meditate, and sometimes to think sometimes to loop in my brain. Some of that also is just forgiving myself, knowing myself, not cutting myself down every day. We can do this, but it takes a village, and I can't do it all myself, nor should I.
Then finally, I do have celiac, so I have a very healthy diet, much healthier than my husband would ever want. But do allow myself a glass of wine. I don't beat myself up for the indulgences I have every now and then. Though if they're not – they’re never have the gluten variety, or the dairy variety at this point, but a dark chocolate every now and then. One of Dr. Wells’ chocolate avocado puddings, amazing.
[1:33:37] SCOTT: Oh, I'm going to have to learn about that.
[1:33:38] DR. O’HARA: You will.
[1:33:40] SCOTT: This was such a fantastic conversation. This was the first time that you and I have had the opportunity to speak. I was so touched by the pureness of your intention, the purity of your heart. I was touched by your spirit, everything that you're doing to help these kids. I just want to honor you, not for just being here and sharing your wisdom and your time and all of that. Really, for the work that you do, the amazing work you do for these children and for everything that you do to help minimize the struggle and suffering of these kids. Thank you so much.
[1:34:14] DR. O’HARA: Well, thank you, Scott. I really appreciate it. As I said to you offline and your questions were amazing. Obviously, you know this world personally and professionally and in so many ways. I don't ever give false hope. There is almost always hope. Don't give up. Find someone, or someone's in the village that you connect with and can provide that support. I am so blessed to live and work my passions. It makes every day worth getting up for. Find your passion, whatever it is and go for it.
[1:35:01] SCOTT: To learn more about today's guest, visit DrOHara.com. That's DrOHara.com. DrOHara.com.
[END OF INTERVIEW]
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