Yes, You Should Know About PANDAS Disorder

Welcome to AIM For Health: Root Cause Conversations with Dr. James Biddle. All content from the conversations in this podcast are created and published for informational purposes only. This is not intended to be a substitute for professional medical advice and should not be relied on for personal medical decisions. Always seek the guidance of your doctor with any questions you have regarding a medical condition.

Hi, this is Dr. James Robert Biddle. I’m at Asheville Integrative Medicine. Today is the 16th of July, 2020. We’re doing a little show, a podcast we call ask Dr. Jim Bob.

>>    Hello everyone. This is Joy Lambert, new patient coordinator with you as well.

And, Joy, what we’re going to talk about today?

>>    So today we’re going to talk about PANDAS. That’s right, I said PANDAS, but I’m not talking about the cute black and white teddy bears.

I love the teddy bears!

>>   I do too, but there’s another type of PANDAS that not a lot of people know about, and this is something I don’t know a lot about, so I’m looking forward to learning as well. I’ve got a whole bunch of questions for you… 

It will not give you warm fuzzies…

>>   … No, unfortunately not, but I wanted to talk about PANDAS. We’ve had some inquiries about it, so I thought this would be a good one to jump into.

So what is PANDAS?
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. And what that means is, you get a strep infection and then there’s a protein on the strep that your immune system starts to attack, that happens to look like a protein on your brain.

>>    And when you say strep, you mean strep like we all think of you get strep (throat)?

Yeah. Group A beta hemolytic strep. There’s lots of types of strep. There’s good strep in your gut, there strep that grows in women’s private parts, there’s all kinds of different types of strep. You know, there’s a strep from under-cooked hamburger (which is) a little bit different…

>>   Right, but we’re talking about strep throat.

We’re talking about strep throat, but the funny thing is you don’t have to have an obvious strep throat to get this. And this is actually the classic example used in medical school to teach doctors that infections can precipitate autoimmune disease. Because before 60 years ago in the United States, one of the leading cause of heart problems (and congestive heart failure) was damage to your heart valves from rheumatic fever and rheumatic valvular heart disease. And that was the very same thing, but the target, rather than being on your brain was a protein on the heart called an M protein for myocardium protein.

So you would get a strep infection, it would get untreated or out of control, and you get rheumatic fever, which means you have these really high fevers and skin rashes. Scarlet fever goes with this same…sort of thing, same thing basically. And then you end up with an auto immune disease of your immune system attacking and destroying your heart valves. Now I have never seen a single case of this in my entire career. I’ve seen people who had it when they were kids who are now old people and have pig valves and mechanical valves because their valves were destroyed, but I’ve never seen an actual case. And I assumed it had gone away completely. I just looked it up…it turns out in developed countries, there are still about three cases per a hundred thousand populations. That means, you know, in Asheville, we should have three people who still have this.

Now this is prevalence, not incidence. This is not per year. This is per lifetime. So in Asheville, three people in their lifetime will have rheumatic valvular heart disease stemming from strep, but in non developed countries, especially in Sub-Saharan Africa and parts of Southeast Asia, it can be up to 444 per hundred thousand. Which means if you looked at the city and size of Asheville, then there’d be almost 500 people with this problem during their lifetime, and that is because of lack of medical care, lack of antibiotics, less hygiene, those things. So I didn’t realize that rheumatic valvular heart disease was still around on a worldwide scale, or even still in the United States. But what’s interesting is that it has evolved now into this other thing called PANDAS.

>>    Does it matter if you get strep once or you have strep 10 times? Is there a cutoff point where once you have it this many times, you’re likely to have it turn into something else?

I don’t know. In fact, the majority of kids that I’ve had, you don’t have to be a kid, but the majority of kids I’ve had with this did not actually have obvious clinical strep throat. So you can have this situation without having strep throat. So what does PANDAS look like?

Well, PANDAS looks like inflammation of the brain and it shows up as other diagnoses, including obsessive compulsive disorder or OCD, Tourette’s syndrome, which is ticks and vocalizations that you don’t intend to do, anxiety, depression, and especially separation anxiety…and the kids who weren’t having separation anxiety start having separation anxiety when their parents leave them at school or something like that….and then meltdowns and rages. I know somebody personally who has this and when their strep is activated, they have the volume knob on the radio on increments of five. They have to, has to be a volume of 20 or 25 or 30. It can’t be 22 or 23. That’s the type of OCD. And this can come out of the blue or it can kind of be stuttering for years.

>>    Does it seem to matter or have more prevalence between boys or girls?

It’s actually thought to be more common in boys, but in my practice I’ve seen it be about even, So I’m not really sure, but it can be either. It does seem to run in families. And I don’t know if that’s genetic or if it’s environmental….

>>    Well, because of all these symptoms you’re talking about, and it seems like it can be manifesting in different ways, is it possible for it to be confused with other disorders and be missed altogether? 

Well, I think the disorders get diagnosed. Their anxiety gets diagnosed, their OCD gets diagnosed…it can show up as ADD –  attention deficit disorder….those things can get diagnosed, but then the cause for it is what’s getting missed, because like I said, you don’t have to have obvious strep and you’re not going to do a blood strep test for a more chronic strep unless you think of it. And it’s just a matter of thinking about it. And this is not necessarily alternative medicine. This comes straight out of university professors in pediatric neurology figuring this out, but it takes usually 20 to 30 years between the time that people, meaning scientists and researchers, discover stuff like this to the time it actually becomes medical practice in the hands of primary care physicians.

And that is usually only sped up if there’s some brand new drug with a huge profit margin, that Big Pharma is detailing doctors on. And that’s not the case here because all you do is give antibiotics for this. So when these kids are diagnosed, the usual treatment is to give the 10 days of antibiotics and the types of antibiotics are usually the penicillin antibiotics, like a amoxicillin, Augmentin is the best medication for this…Zithromax, which is also called a Zithromycin works and Cefdinir, which is called Omnicef, works for this. And if all else fails, I’ve seen penicillin shots work. Now, literally they are a pain in the ass and moderately expensive, but that was the treatment for rheumatic valvular heart disease…is that you would get penicillin shots starting twice a week, and then once a week, and then once every two weeks, and then once a month for years or decades, because if you didn’t people would recur.

Now, what I see is that these kids tend to fall into three different categories.

>>   What are those?

One is you find it, you treat it and it’s gone. And you never have to worry about it again. That’s optimal. It unfortunately is a minority. The other end of the spectrum is I have kids who are still on antibiotics years later, like more than two years later. And this is kind of like the rheumatic valvular heart disease, where you got to stay on antibiotics. Every time I try to take them off, they relapse. And I’ve got a couple of great examples of kids who are actually in special ed classes because they had to have an IEP, an Individualized Educational Program, because they had such challenges in their behavior and learning deficits. But within a couple of weeks of getting on antibiotics, they were mainstream, they were at the top of their class, their social abilities dramatically improve. But then every time I try to take them off of antibiotics, they relapse.

>>   That sounds really challenging.

Yeah. So nobody wants to keep kids on antibiotics long term, but we’d much rather have them on antibiotics and be normal functioning kids than to be relapsing. And then we, I get kids who get better and then we can take them off the antibiotics…and what happens is they go back to school and there’ll be a strep outbreak and they’ll get exposed and then they’ll relapse. And they might need a round of antibiotics once, twice, three times a year, but they don’t have to be on it continuously.

>>    Now, before we get into some of the other options that we may have besides antibiotics, I wanted to backtrack a little bit and talk about diagnosing it. How do we look for it?

There’s a couple of simple blood tests. One is called an ASO titer or “Antistreptolysin O”. It’s the antibody that we make to a particular protein on the strep. And if that’s elevated, then you can be sure that somebody has had an active strep infection recently, if it’s negative or borderline, there’s a secondary test called anti-dnase-B test, which is an enzyme that the strep makes. So it’s a bit more direct test. And sometimes that’s positive, even when the ASO titer is not positive and those are pretty definitive for it. Then every once in a while I get somebody who’s kind of a borderline case that we’ll just give a trial of antibiotics. So you can always do a clinical trial and see if they respond.

>>    So it sounds like casting a little bit of a broader net here than there just being a PANDAS test that you either are positive or negative for?

Well, you got to think about it. You got to take these kids who, especially if they have a sudden onset of obsessive compulsive disorder, anxiety, ADD, Tourette’s, seizures…..I had one patient who had trichotillomania, which means that her symptom was, she pulled her hair out and ate it. And that was her form of OCD. So this can show up in different ways. I have another patient who had narcolepsy, which means they fall asleep suddenly during the day and we’re on medications for that. And this turned out to be what it was, it was the brain inflammation from PANDAS. So this can show up in different ways….you just have to be suspicious. But these aren’t expensive tests. These tests are like $20, $30 each to do. You just have to think about doing them.

>>    Which leads me into the next question: Are there specific characteristics that might make some people more susceptible to having or developing PANDAS?

Yeah. What I’ve seen is if you’re low in iron. We’ve got to have iron to make our blood cells, obviously. But we also have to have iron to run our immune cells. So our white blood cells basically take iron and vitamin C and make hydrogen peroxide. And that’s how we kill off infections. So if you’re chronically low in iron and you don’t even have to be low enough to have anemia, you can have a normal blood count, you don’t get anemia until there’s one lab test called a ferritin is less than about eight, but anything less than 50 can actually inhibit your immune system and your energy and your thyroid and how your brain works. But especially your white blood cells use the iron environments to make hydrogen peroxide. And if you’re low in iron you’re shooting blanks, so you can’t suppress these infections. So we got to get that up. And the other thing that I’ve seen is kids who are growing up in restored or not restored Victorian homes with a lot of lead dust and mold, because all these old 1920 bungalows and Victorian homes in Asheville have these basements that are unfinished or crawl spaces that are moldy and they’ve got lead. And a that’s a common thing I’ve seen is kids living in old houses that have mold or lead exposures.

>>    And of course, if a parent is suspicious and they’re thinking about, “well, I don’t know if my child has low iron levels or not…” talk about an iron supplement because you don’t just want to start doing that, right? Just on your own, taking an iron supplement?

Well, there’s problems with iron overload too. About 10% of the population has genes for hanging onto too much iron. So you want to measure iron directly. And this is one of those things that doctors just don’t do routinely. They’d measure your blood count and chemistry profile, maybe they measure your thyroid, but they don’t think to measure your iron. And I think iron is essential. It has a very narrow therapeutic window, meaning it’s easy to be too low. It’s easy to be too high. Too much iron is really toxic to us. And especially with the COVID-19 too much iron is very toxic to us. People who have high iron have been shown to have the worst outcomes from that pandemic.

>>    So in this case, it would be worth having a child’s iron checked before deciding whether or not to give them supplements?

Right. And I like to check two tests. One is a direct iron that has the percent saturation, and the other is a test called a ferritin, which is a carrier protein for iron in our bloodstream.

>>    Okay. Now, it’s a pediatric disorder, but can adults develop pandas as well?

Yeah. I’ve diagnosed several adults with PANDAS, then it’s called PANS.

>>    Do the symptoms vary at all? Or is it about the same? 

It’s about the same. Yup, about the same. But especially….may be more sensitive to just the emotional dysregulation. Like you’ve been pretty good, but all of a sudden, for some reason you’re having rages or anxiety or panic attacks and you never did before, certainly tics and OCD, you know, is a big red flag for that.

>>    Now what’s the likelihood that if someone has had strep before at all that they could develop PANDAS?

I don’t really know the likelihood, but again, it’s not so much about whether they had strep, but whether they have symptoms of brain inflammation. And then whether they’ve had step or not, you go looking for it and that’s why people aren’t catching it, because they’ve just not thought to think about it yet. The primary care physicians and pediatricians, and unfortunately, like we talk about a lot in our podcast is, why is that? Well it’s because doctors are in a paradigm box that is basically defined by what makes Big Pharma a bunch of money. So if there’s not some new wonder drug out with a huge profit margin, then doctors aren’t taught to look for the problem.

>>    And now we can loop back around, I think, to what else do we, Asheville Integrative Medicine, what else can we do to help with PANDAS that’s outside of the (paradigm) box?

What I’ve noticed is that most family practice and pediatricians are extremely reluctant to give more than 10 days of antibiotics. Even if they diagnose PANDAS, the kid get 10 days of antibiotics, and I found that you got to start with 6 to 12 weeks of antibiotics to get this under control. You’re talking about a much longer course, and you’ve got to think like doctors thought back 50 – 60 years ago with the rheumatic valvular heart disease. They did not give just 10 days of antibiotics for that. They would give penicillin shots for months or years for that. And that’s the way we’ve got to think about it. Because there’s a reason that these people were not suppressing their strep…whether that’s nutritional deficiency or lead toxicity or mold exposure or genetics, and we do go looking for the mold exposure and the lead toxicity and the nutritional deficiencies in our clinic. So that’s the other thing is that we do the other doctors don’t do, but just being willing to give longer courses of antibiotics and educate parents about that.

There’s some wonderful books out there. The best one I know of is written by a mother who’s 12 year old, you know…suddenly his life turned upside down and this book is called “Childhood Interrupted” and the author is, Beth Alison Maloney. And I always respect research done by parents because nobody is more motivated to get a kid well then than a parent, especially a mother who sees their normal, healthy kid suddenly take a regression.

>>    You don’t want to see them struggle.

You don’t want to see that. One time I was at an autism conference and a lady stood up to speak and she goes, “you know, you don’t have to be (and she was a parent of two autistic children) …don’t have to be a rocket scientist to learn and educate about this stuff, but I happen to be a rocket scientist (and she was!), and she was teaching about the biochemistry of autism, and this is one of those things that can kind of show up as a mild autism…what used to be called Asperger’s…is another way it can actually show up.

Okay. Some other books. There’s one called, “PANDAS and PANS In The School Setting.”

And then that author is, Patricia Rice Doran. I haven’t read that book, but it looks good. And then there’s one written for the kids themselves, for younger kids to understand what may be happening. It’s called “In A Pickle Over PANDAS.” And of course, PANDAS is hard to research because when you type it in, all you see as the pictures of the black and white bears, you have to type out the whole thing. You can’t just type in “pandas” when you want to research it. So other things that we can do is either IV vitamin C or hyperbaric oxygen therapy. And we found the hyperbaric oxygen…I don’t like to do IV vitamin C in kids….

>>   Right, for obvious reasons!

Yeah. So the hyperbarics is good. You can put them into a chamber, and we have a chamber (in the clinic). Actually, we have three chambers. One stays here, it’s called “The Pod”, and you can get in there with your kid. Of course you have to come here to do that. So it makes it a little bit more expensive and a little bit less convenient. And then we have two different chambers that go home. And one of them is big enough that a parent can get in with their child.

>>    Of course. We always want to make sure that children can communicate well and express themselves. And if not, if that’s a struggle, we need the parents to get in with them. It’s very important. 

Right. And then with the take home chamber, you do one treatment here and then you take it home, it’s portable, and you set up a home and usually do it an hour, twice a day. We usually do that for two or three weeks. And so in two weeks you can get 28 treatments in which is a great start. And you can see how much of a difference that makes.

>>    How does the hyperbarics actually affect the PANDAS or the brain inflammation?

The “hyper” means that you’re increasing the pressure, and we’re going up to 1.3 atmospheres of pressure, which means it feels like you’re under about 10 feet of water, the amount of pressure your ears feel under 10 feet of water. And that’s called a dive, because this was originally used to treat the bends from deep sea divers coming up too fast. And that pressure then pushes the oxygen into our bloodstream, not just onto the red blood cells, cause just breathing oxygen puts oxygen onto your red blood cell, but that doesn’t work. That doesn’t do anything for the immune system. Because the red blood cells don’t leave the bloodstream. But your plasma of your bloodstream does exchange with the interstitial fluid around your cells of your brain, and so that actually delivers more oxygen to the cells and especially the sub cellular energy generators called mitochondria in your brain and your immune cells. And our cells love that oxygen, but infections don’t, They don’t like that oxygen a bit. So it both improves our immune system and suppresses the infection and we see it can be wonders, and I’ve got some kids who have done well, and as a way to not be on chronic antibiotics, they actually end up with a hyperbaric chamber of their own in their own home and do that maybe three times a week…an hour three times a week for long-term maintenance to keep their infection suppressed.

>>    I have to say nothing makes me smile bigger and sometimes tear up a little bit then to have parents of a child we’re treating, calling me up (because usually I talk to people about hyperbarics anyway) to say, “Oh my goodness, my child’s been using it for a week and we’re already seeing this happening!” 

Right. And we’ve had that just this week!

>>   It’s amazing. Absolutely amazing. Now, aside from these things, are there any type of anti-inflammatory nutritional recommendations we might be likely to make for this?

Well, you know, that’s part of what we’re doing in the clinic anyway, is doing kind of a full workup for people. A part of that would be if, if they have signs of allergies or gut disruption or rashes, we might test for food allergies, and we can either do avoidance or we can do oral drop desensitization for food allergies. I know this was a big deal on my own daughter, who’s almost five years old now, and she had pretty bad eczema and turned out to be very sensitive to eggs, wheat and dairy. And we had her off of those for a while and gave her the oral drop therapy. And now she’s back on all those and no rashes and tolerating fine, but anything like that can cause more inflammation throughout the entire body, including the brain. So that’s what we might look at it. We might look for other infections too like mono. Strep and mono tend to go together and really support each other. So we’ll test for reactivated Epstein BARR virus, which even little kids can have, even though they haven’t been dating, but you know, aunt Mary or grandma Elizabeth come in and give big smooches, “gimme a big smooch here, baby!”. So you know, little kids can definitely get mono.

>>    And then for ongoing, more lifelong care perspective, what are some ways to hopefully manage PANDAS? 

Well, I think you want to decrease re-exposure. I think re-exposure is huge. And I have seen that both in kids going back to school and then there’s strep moving around and may get a relapse or even within a family. I have several families where there’s two kids in the family with PANDAS and they both always relapse at the same time. So I’ve got to imagine they’re exposing each other. And then avoiding the stressors that caused the relapse, and that’s a lot about air quality. I’m really convinced that the air you’re breathing, you know, it needs to, it needs to be good quality air and you can’t have a bunch of mold toxins in it. And that seems to be the big challenge. How good is your house? How well is your house built? How well do you keep it dry during the summer? All the way down to getting your ductwork cleaned out every five to seven years, if you have forced air.

>>    So what can someone do if they might suspect that they do have poor air quality that’s contributing? Are there things you can do to help clean up your air?

Well, you can use your nose and if you don’t have a good nose, you can get a friend with a good nose and just use your sniffer and sniff around. I mean, if you’ve got poor air quality, if you open a basement door and you get hit in the face by dank, musty smell, you got a problem and you’ve got to get that remediated. Otherwise there are professionals out there. I don’t have one to say on air right now, but there’s professionals who do evaluations of air quality.

>>    Would air filters help at all? 

Air filters can help. Yeah. Especially in the bedroom. Now in order to filter the air or dehumidify the air, you have to have a house closed up. I had a patient yesterday who had their windows open and doesn’t have air conditioning in their house, but they were trying to filter their air and dehumidify. And it’s like, well, you’re just running electricity. You’re not really doing anything. You have to be able to close the windows to filter the air, unfortunately.

>>    And the last question I have for today since PANDAS is an autoimmune issue, does having that make one more likely to develop other autoimmune issues going through life?

Well, I have two answers for that. One is, I don’t know. And I doubt it’s actually been studied because PANDAS hasn’t been around long enough for somebody to run that study. The second answer is yes, because every autoimmune disease ever studied pretty much triples the risk of you getting another autoimmune disease. So if you’re tending towards autoimmune disease, you’re tending towards auto immune disease and you want to reverse the causes of that. You know, one of the big things we do besides looking at food allergies specifically is just have people go on a gluten free diet. Because gluten is such a big deal has been so closely tied to, for example, thyroid autoimmune disease of Hashimoto’s that it’s a worth a gluten free lifestyle when people are trending towards autoimmune.

>>    I can testify to that from personal experience.

Give us your testimony!

>>    Well, I was diagnosed with Hashimoto’s about 14 months ago here at the clinic. And the first suggestion given to me was to go gluten, dairy, and soy free. And of course that’s big, that’s a big deal to just radically change your diet like that. But I did do it and I committed to it. Because I’m here, I really believe in what we do and I want to walk the walk and talk the talk. So I eliminated all those things from my diet. Six months later, my antibodies were down significantly and now it’s been 14 months and my auto-immune indicating antibodies are now down 50% from when I was first diagnosed. So in just over a year, I’m halfway back to normal just from changing my diet, which is unbelievable. I couldn’t be happier.

Right. So your immune system is calming down. And I mean, that’s the whole strategy, is figuring out why are people getting autoimmune disease!?… and then reverse that. And our general list includes food allergies, in particular gluten sensitivity, toxicities, especially heavy metals and molds, but they can be other chemical toxicities…nutritional deficiencies, hormonal imbalances, sources of stress, etc. We’re always looking at those fundamentals and trying to clean them up  

>>    And it’s worth doing, it really is!

That’s right. But if you have a child or even an adult family member, who’s got ADD, OCD, Tourette’s, anxiety, separation anxiety, trichotillomania, narcolepsy…all these different things, then definitely get your iron levels tested and get your strep blood levels tested your antibody reactions to strep tested with the ASO titer.

So that’s this week’s, ask Dr. Jim Bob! Thank you very much for helping out, Joy.

>>   Thanks, Dr. Jim Bob. I learned a lot. I hope you all did too. And please send me emails at info@docbiddle.com because we want to know what you want to know for upcoming podcasts.

All right. Take care of yourself and each other.

 

 

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