The Whinypaluza Podcast with With Elizabeth Harris Episode 130 What’s Wrong With My Child?

No need to whine, it's Whiny Palooza! Have some wine and join us on the Whiny Palooza podcast with Rebecca Green.

Welcome to the Whiny Palooza podcast. I'm your host, Rebecca Green. I'm a wife, mother of 3, and licensed clinical social worker. I also have 3 fur babies at home too. My passion has always been to help children and their families. I always dreamed of being a wife and a mother. Parents are always learning through their struggles, failures, and successes and joys. I am no stranger to this wild ride of parenting, and I know behind every great parent lies a team of supportive friends and family. I want to be part of your support system. I want you to know that you are not alone. We are in this parenting world together. Join me every week for insightful discussions with experts on parenting and marriage, as well as other parents who have found the secret to successes in parenthood. You'll learn tips and tricks to make life with your family better than ever. I hope you will follow along with me while we dive into what it takes to achieve a happy family.

Hello everyone, this is Rebecca Green for the Winey Palooza podcast, and I am very excited to have Elizabeth Harris with us today. Elizabeth, thank you so much for spending time with me today.

Absolutely, Lareka. I'm so looking forward to chatting with you about pandas.

I'm so excited. I want to introduce you. She is a very fascinating lady. Um, Elizabeth is the author of What's Wrong with My Child and America Is Infected. Elizabeth Harris is a science-minded business owner with more than 2 decades of experience in the field of wellness. For over 2 decades, Elizabeth has owned La Bella e Famosa Spa. Did I say that right?

You did great.

A highly successful facial and body contouring spa in the Nashville area. She has developed her own skincare line and cellulite reduction device. Sign me up. She, she is currently pursuing a master's degree in molecular medicine and has a degree in biology and chemistry from Murray State University. She also has training in nutrition, physical fitness, and cardiac rehab from American College of Sports Medicine. Elizabeth's education, life experience, drive, and entrepreneurial spirit proved to be the very thing that saved the life of both herself and her son after they were diagnosed with rare and very serious autoimmune diseases. Today, Elizabeth uses her experience and her expert wellness team to help others at What's Wrong Wellness. Well, holy moly, you did it! What a smart, fabulous lady you are. That is one heck of a bio you have. Elizabeth learned that PANDAS, PANS, and so many other of these mystery diseases are so difficult to treat because the organisms that cause them were man-made. There were strains tested in the Texas prison system on death row inmates back in the late '70s and early '80s. Once the organism was released out into the community of Huntsville, Texas, MS, ALS, and rheumatoid arthritis were reported at a 5,000% higher ratio than the rest of the country. Then there was some release in the Gulf War resulting in the Gulf War Syndrome. Those soldiers came home and spread it to their wives who came down with fibromyalgia and chronic fatigue, and their children had extremely high rates of autism. And that is where all her crap started. Started. There is treatment, but it is not easy by any means. She wants to share with you Dr. Nicholson's website. It's immed.org. It took her several years of antibiotics, many kinds, to get better. At What's Wrong Wellness, Elizabeth uses the ZYTO scanner, Z-Y-T-O scanner, to look for stressors and use nutraceuticals to clear them. She does get really good results with her program. But seriously, who knew? If someone would have told her 5 years earlier, she would never have had to live through all that trauma. Thank you.

I mean, and you know, I don't take any credit for it. I guess I was just born with intellect. My dad and mom were, you know. You were born with a good brain and you're using it for good. Yes. Yeah. And I think, you know, just sometimes some— a bug bites you, and mine was education. And I just really wanted to pursue, you know, a degree in biology. And it's— it is funny how life takes you in different places, maybe a couple decades before you know why. But when I originally went to school, it was for political science. I don't know why. I was just wanted to be a stockbroker. And then for some reason in biology class, I was like, whoa, I didn't know there was anything inside of there. You know? Oh my God.

That's awesome. Well, start us out. You wrote a fantastic book or two. You wrote two fantastic books. Can you tell us why you decided to write a book?

Um, full disclosure, I was absolutely furious. I was furious and I was just like, you know, to go through everything we went through and not have this simple answer that could have saved us all of these things. Oh my goodness. And so I thought my whole, I mean, I would never be able to live the rest of my life. It was a moral responsibility to try to tell people while I didn't really have, I didn't, I mean, I market for a small locally, but you know, I mean, this is a different ballgame. And so I just decided writing a book. Even though I'm not a writer at all. And so it was just, again, it was one of those things where I posted it up in a group 10 years ago or 8 years ago, and I said, I'm gonna write a book. And I'd been posting in there, and somebody made a comment, you're no writer, you're a scientist, you need an editor. And I'm like, and what's an editor? You know, I just got through learning 19A, now I can't do all that. So she paired me up with somebody who took it on contingency because I was broke, you know? And so it was just like, she walked me, we did a Google Doc together and, um, yep, it's been quite the journey, but I'm really glad to be at this part of the journey. I've gotta admit.

Well, and you are gonna help people because what you had to go through to figure everything out. Tell us, tell us your story. Tell us what happened to your son. Let's start there. What was wrong with him?

Let's start there. I mean, it was about 2010. I mean, and you know, he'd had a history of, um, I mean, ADHD, you know, some things. He was extroverted like myself, I thought, you know, no questions about that. And then he got a strep throat infection. So that is Group A strep, and I know a lot about it because I had them quite a bit growing up as well. Now, um, a couple weeks after his bout with strep, which did present atypically because normally kids will have like a fever and a sore throat and everybody's like, open your throat, let me see the white, you know, pustules in your throat. No, that is not the way to find strep. Those quick strep tests, not even— I wouldn't even count on them for anything. You know, strep can be skin, it perianal, it can be in the throat, it can be Group B strep, Group C, there's D, E, there's all kinds of streps. And so it's like back to that, he did test positive for Group A. We took the, um, antibiotics for that, which I think was amoxicillin, the pink liquid, you know, but he had stomach, stomach upset. The couple weeks later, so far, um, I mean, so much time had gone by that I didn't even make the connection initially because I'm just sitting there working on something and I look over and he's just out of the blue, buttoning his shirt up and down, up and down. I'll never forget, it was a flat flannel plaid, little cute little long sleeve shirt. And he was just up and down. And I just looked at him and he was fixated on it. Like wouldn't even look up at me. And I was like, what's going on, little guy? He's like, I can't get my buttons right. And I'm like, okay. But then I noticed he starts walking back and forth across the transition strip. Like, you know, and I didn't know at the time he had to get his left foot to set on a certain spot that I don't know, something he had going on back and forth, back and forth. And I'm still just like, hey, what? You know, not really knowing anything's wrong. Well, the second day he's building this massive tent that's the size of Rome. I mean, every blanket, everything in the house. I mean, kids build tents. That's not abnormal, you know, but the way he was building the tent, it was 5 or 6 hours of dragging and tucking. And there didn't seem like any end in sight to this tent was not going to ever be done, if you will. You know, and it was like him. I mean, hindsight, like, of course that day I'm like, wow, that's awesome. Duh. You know, not noticing it's like neurological symptom. And so he went and slept in there and I did, I did call the doctor cuz I did think it was odd about he, he came in there and asked me to boil his toothbrush and to get it up to a certain degrees. I mean, the degree was actually correct. That's when I was like, What? It was like 101 point, because that kills X, Y, and Z. And I'm like, you're 11, you know? And so, and then he wanted me to dry his jeans again because they still felt wet to him, but they were dry. And so I did call a doctor. Of course, his response was, I'll never forget it, he's probably just playing hide and go seek. I'm like, you know, that phrase alone sums up our entire medical care with this guy. Just, just explaining everything away. Just like as a parent, you know something's not right.

Yes.

And then you call someone that you trust and respect and, and they basically just, you know, parent shame you, if you will, and make you feel like you're crazy or it's not happening and you're watching it, you know. And that would just go on to describe the next 4 or 5 years because, um, Finally, on day 3, I called one of my colleagues because by this day my son was crouched behind the chair, scared. I mean, thought bugs were crawling on him. Actually, like, felt things, started hearing like songs, you know?

Oh my gosh.

Yeah. And thinking, think people were looking out the window. Well, you know, I mean, thank goodness I looked back and you try to find those few morsels of sun. And I'm like, if I hadn't got this one doctor that happened to be on call that day on the phone at that time, I probably would have just gone along with their whole psychotic break at 11 years old, which is like, nobody should go along with that, you know, like just out of the gate. So fortunately the doctor on call said, it sounds like an acute onset of PANDAS, an acute onset of PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. And I would just say, don't even worry about learning that because that's not even going to be the end of the story. That's just where my head was for the next couple years. I'm like, Group A strep. Doctors are like, no antibiotics to prevent it. But I know that with rheumatic fever, when you get strep and it affects the heart, you know, then you're put on penicillin prophylactically for life because any subsequent strep infections will cause or can cause valve damage. Hmm. You know, so to me, I've got this thing escalated at that level just because of my grid and my education.

Yeah.

I mean, I've boxed it. It's, this is it. So imagine my surprise when we are discharged 3 days later from the emergency room with a prescription for Zoloft and a referral to cognitive behavioral therapy, you know, and in my head, because my mom has a master's in social work. And so, you know, I think I was raised around the psychiatric world. You know, I understand a lot about it that, you know, probably a lot of people don't. So I had that as well.

Right.

So I'm like, okay, so why are we giving an anti, you know, psychotic or like an antidepressant? I mean, Zoloft is used for a lot of things, but you know, for a, a post-strep infection, like encephalitis of sorts.

Mm-hmm.

But I mean, nobody would give me any other ideas or do anything else. And I, I did call several pediatricians in town. Nobody'd heard of it. I hadn't got the memo that it was super controversial. Fast forward, I'll tell you why, because if strep can cause an onset of OCD, uh, massive, uh, ADHD, anxiety, you know, hallucinations, audio and visual, um, bipolar-looking thing, schizophrenia type.

Oh my gosh.

If, if, if strep can cause all those things, then I think that might mean that I would come to find out that infections in general can probably lead to psychiatric symptoms.

Wow. Yeah, we don't, we don't know this. We do not know this.

No, we don't know this, and we don't know this, or they don't want us to know this. I'm not sure which, and I'm not even like here to talk about that, only that I believe because that was why my journey was so difficult because at every juncture there was naysayers and a reason why it couldn't be. So anyway, I did come to learn that psych meds like Zoloft do suppress the immune system. So it is now explainable why they would work when they put a lid on the symptoms, you know? Um, so we went a year, cognitive behavioral therapy it is for us. And, uh, we went and it was funny cuz I was thinking back to all this time when listening, cuz I had adopted 2 children from the state of Tennessee, from DC like 2 or 3 years prior to this, you know, and of course I'm thinking that that's gonna be my focus. Like, you know, I mean, we're great, we're super healthy, we've been successful. This is like my pay it forward type thing, you know, but it turned out that it was my own biological child that ended up requiring the brunt of my energy. And so it was just a very, you know, trying time to sort all it out and then try to take care of, of the 2 adopted children as well.

I can't imagine. Well, and you also say that you were sick as well, but you didn't know it was all connected. So tell us, tell us about that.

Well, I mean, it, and you know, it's so much going on at one time. It was like the perfect storm. And so I could, I could kind of go along with some of the things people were thinking, but in my heart and my intuition, I knew it wasn't right because we had that big, um, You know, flood of 2010 here in Nashville took my downstairs out, which was where I housed my consulting group company and several devices. Oh no. Yeah. My inventory. So, you know, that was a big loss. Plus mold could have set up. I mean, you know, I didn't have insurance and by this time we were headed downhill. And so, you know, all these things that get thrown in the mix, we'd gone through a, a recent divorce in our family because my husband of almost 20 years, I felt was depressed and, and not able, lacking energy, no motivation. So, you know, we tried all these things, and that's why I come, because I did so— we sent him to this camp, you know. I mean, he tried all these meds, you know. At the end of the day, that was also connected, you know. So it's just like talking about marriages and families and parenting is just like This is the missing link to so many families, you know, and it's just unnecessary to not be able to get the help you need for it. So let's just talk about the year that we did cognitive behavioral therapy because—

Yes. Yes.

I, I was looking back. It's funny. It's not funny at the time, you know, but by now my physical symptoms, I had been getting tingling in my fingers, numbness in my hands, kind of. I had broken a little pinky, my little pinky here. And you know, it hadn't healed right. And it was excruciatingly painful. And the orthopedic surgeon didn't recognize it as complex regional pain syndrome setting up. And so if you don't get the treatment in time, it's incurable and you go on to develop this like chronic pain. It's the highest disease, I mean, highest pain scale of all. I don't know. Anyway, it was, I could have, I was like, oh my God, I can't do this. Why would I have this crazy disease and my son has this crazier— they're equally as crazy extreme diseases. Moon and I own a spa, we've eaten healthy, we have like helped in the community. We've done— I mean, like, what, what have we done, you know?

Yeah, what is going on? Exactly.

And you just question yourself and you're like, well, it's the trauma, but how would the trauma cause my hair to— well, hair falling out. All the symptoms start to like merge. You can't remember what world you're in when you're in the place that I was in because it's like we got neuropsychiatric symptoms from physical, you know, situation or infection apparently, or autoimmune. Like, I— it just all started to become one thing to me because the more I looked in all the worlds, everything was crossover. You know, so you could have this from this, but it could also be from this and it could be, everything's in different questionnaires and different sections and different, you know, practices. And it's just like, are we all looking at the same thing here? But everybody's just looking at it from a different angle. I mean, like, can we say pink elephant?

Like, oh my goodness.

Yeah. So we get through the first year of therapy, but I'm all into that because as you pointed out, I mean, I'm into school and learning and, and, and I'm a 3 on the Enneagram and I'm a AAA personality. On top of that, I was infected with a strain that contained HHV-6, which just sends you through the roof. So I've got all the components.

Oh my goodness.

I, I am just like reading these books of this therapist who's very intelligent, PhD, you know, works with autistic children, and proceeding to tell us that there's a detachment disorders. All of a sudden, all these things in all the kids. Whereas like when we adopted them, they went to therapy, 6 months, they were in the clear. We went to Disneyland, all was well, you know. I mean, there was no, there was no problems really. I mean, like a little, little one didn't want to go to school. I mean, he doesn't want to go to school, but that was just like for a few days, you know. And so I'm sitting here listening to this therapist say, okay, these, all these things have set up in your home, these, um, codependent relationships. I'm like, between a 10 and 11-year-old boy? What? Okay, tell me more. You know? And so I'm listening and I'm open-minded to it because I think that she's gonna help Kody get rid of his panda somehow.

I'm sure.

Been hopeful. So I have 400-page books on attachment disorder and I'm just like doing all these exercises with them. Doesn't matter at all what I do. But that following year in November, it happens again. But this time Cody gets sick and this is a year's past. He gets sick and, and it's really all in his stomach. Like you wouldn't have even known. I mean, he couldn't be touched. His skin was sensitive, auditory, visual hallucinations. I call a therapist and I'm like, you know, we're not gonna make it to the appointment today. I need you to come to our house.

And she's like, um, well, that's a boundary violation.

And I'm like, well, violate your boundaries and get in your car and drive here because it's a boundary violation to make me pay all this money for the wrong treatment. Let's talk about that. Yeah, I mean, let's talk about the real boundary violation in this whole situation. So she comes to the house and she looks at him and she's like, oh, oh, we need further medical rule-outs. And I was like, I could have a VH. Oh my gosh. Hey, who has the money to throw at these wrong treatments? No, like, and, and, and B, I, I see myself cuz I'm not able to focus on work. Things are sliding at the shop. The girls are in disarray. I've got 15 staff members. My GM's not really holding it together and, and she's got some symptoms too. So I'm like getting these, oh my gosh, the lady that cleans our house, breast cancer. It's just all around me and I'm like, okay, ignore it. You just gotta keep, you gotta get your kids sorted.

This is gonna be bad if he becomes a teenager outta control.

You're a single mom now, you know, so she wouldn't see us anymore. And then I went back to her pediatrician and he's like, go see. Anyway, long story short, nothing happened. They didn't help. He got a second onset of stroke in May of 2013 via a housekeeper. Now, you know, overnight, instead of just the symptoms he did have, which I'd kind of gotten a handle on, and we could use that OCD monster talking occasionally, you know, and it would kind of work. But this next level, when he got the second strep infection, was something you— I mean, it was overnight. It was overnight. And he began exhibiting oppositional defiance disorder because up until this point when he had never just looked at me and said no, never. Like he'd be mouthy or like, I don't want to, but it was never just like, no. Right. And the day after he got beat, struck that time, it was just no. Uh, and not just no, like that defiance. Like I see it in that, those Facebook groups, those oppositional defiance disorder children. I'm like, if you're, if you think your child has that, please take them to a neurologist. Please take them to Dr. Rosario Trifiletti. Please bring them to me and let me get you to the right path because this is not normal and it's not anything that you're doing. I spent his whole 8th grade year on total quit my job, basically let it go, quit consulting, stop traveling, stayed home, move the nannies out. I'm here. If it's parenting, let's do this. Implemented that Total Transformation by James Lehman. Are you familiar with that program?

Mm-hmm.

I mean, it's structured. It's good. I do like it. It was similar to how I parented anyway, you know, so it wasn't a whole lot of difference, but I did like, I mean, I had a laminated inventory sheet for our groceries. So it's like, that's how I parented anyway. I mean, I had 2-ply tickets for rewards and consequences. I mean, it's just the way I ran a business. So it was easy to bring it over. So it was So they had structure. So whatever, we added reading books, family game night, didn't do a thing. So it was like a whole year wasted. And I just think of all these wasted years that we could have been doing the correct medical treatment and we could have avoided what comes next because it's almost like at every juncture, it's like, so I'm noticing, okay, this thing happens even without strep. Cause like I'm obsessed with Group A strep. You can't be around it, blah, blah, blah. Teachers are emailing me, but I'm seeing other patterns. Like even when he doesn't exhibit this extreme psyche actor, yeah, I guess you could call it a break. There are these little things in between, like ups and downs, like this way, this way. I would come to learn that like that would be the result of allergies, viruses, a stress response, literally anything. That could cause the immune system to launch. So then we know now that's called Pediatric Acute Neuropsychiatric Syndrome. So basically your kid is just going to have these psych symptoms for any and all reasons because there's no longer the ability for them to have physical symptoms of infection.

My, my mind is like, woo! I mean, this is a lot of good information. I mean, what a journey you took to start figuring this out.

Yeah. And I'm just trying to, I'm kind of trying to skip some of the details because I know we have a time limit here and I wanna make sure that I get to the part where there's the solution and yes. And, and how we talk about like what we do because we are in crisis, our country. Is in crisis. And if it continues on this trajectory, like, I am— I feel very fortunate that I'm the age I am. I'm 49, about to be 50, because I remember the time when it was not anything like this. There was nobody at our school with diagnoses. And if I hear one more time that it's like, oh, they just didn't recognize it or not— I know, I'm sorry, but I would remember those types of behaviors now, especially since I know so much about the symptoms, right? You know, I look back in time, they, they weren't there. I mean, there was bad decisions, but we recognize it as a bad decision, you know. But these days it's just, it's next level. And so my hope is that any little piece of information you can plug in and see if it might be a fit for your family, because it was like after this next strep infection, we'd been to everyone. That pediatrician sent us you know, to a couple different doctors. They didn't know about it or didn't acknowledge it, recognize it, whatever. Um, so I found a test on my own. It had just become available in April, I think, of 2014 from Molecular Labs, and it was called the Cunningham Panel. And they look for 5 antibodies against, I think, basal ganglion cell— I mean, just different tissues in the brain. You know, and then when these levels are high or low, it can let you know that there's something going on. So I send a letter to him, email, can I please have this test? And instead of an order for the test, I get a letter firing us. Now this guy's been our pediatrician for 13 years. I mean, 13 years.

Excuse me, ma'am.

I'm so sorry. It was, it was What do you do? I had, I had nobody, no, nobody that knew anything. So I'm by myself and I'm like, okay, we had a psychiatrist that, that had seen the whole thing play out. I asked her, she did order it. He did come out, he came out with a positive result for that. Now, once it was positive, we were able to go back to that doctor's office, but only for 30 days because we were only allowed to go for acute care. So you kicked us out and we are in literal crisis because my son has now gotten symptoms like OCD is one thing, washing your hands, you know, and when your kid does that, it seems like it's so, so bad and such a huge problem. But the next level, I'm here to tell you, is like you— it goes to like deeper levels. So like the OCD splits off because I watched it happen. I, I know how it happens. So there's no guessing to it because it's almost like the more inflammation that came about, the more infections that were layered on top of each other without medical treatment to clear those organisms, the OCD went to new heights. So then we saw like the compulsions, we saw the subsets of OCD. So now it's like not just the typical what you see and, and you don't recognize it cuz you're not an OCD expert until you're like, doing this, this, and this. What is that? Oh, hoarding. I mean, all these little boxes around the house with— he was hoarding his psych meds because we were still on the psych med train. Nobody— we did get a little bit of amoxicillin at some point, but it was too late, too much inflammation for that to really help immediately. So he would baggie his, his psych meds out and keep them, but it was hoarding. And he had these little panic rooms, and my green beans would be missing. They were in a panic room, and water bottles. It would just And you know, you don't know what that is. Poor kid.

No.

Poor kid.

Poor kid.

Poor kid. And so it's like, because you were living with it and seeing it, but then you take 'em into a therapist or a doctor and there's 15 minutes or 50 minutes and you're telling 'em a little bit and they're, they're already making their own opinion based on their small bit. Not that their education's small, I don't mean that, but like it's just a, you know, a smaller frame of a lens. And so they're formulating, oh, that's OCD, Luvox, and this. I mean, it's like this protocol thing. So anyway, this is the whole gamut. I get him an appointment with a specialist. I learned that at this point in time, IVIG is basically his only hope. Intravenous immunoglobulin, right? Yeah, intravenous immunoglobulin therapy, which is the injection of antibodies from a open quote healthy donor. But when we honestly don't know those donors, you know, and we don't know what that's been screened for, but nevertheless, insurance didn't cover it. So there we are up in Washington, DC getting IVIG for $20,000 thinking that he's gonna be cured. You know, it's like, it's like there you're running a marathon and they continue to move the finish line.

You just, you just keep trying to help him any way you can, anything you can find. Such a good mom.

Everything. I mean, it's like, thank you, but it is first things first, like your priorities. And like, you know, life doesn't matter if, you know, somebody's locked up for their, the rest of their, I mean, it does in a way, but it's like, if you can prevent something really bad from happening and I, as a mother, just felt that something really bad was going down. Oh, that's all I can say. And, you know, and it was what, you know, just watching. And of course, this is what, 2013, '14? I mean, I have had a web designer on staff for as long as I know. I don't physically myself know how to like download apps that watch your kids on phones, and I'm not that good at that stuff, you know. And so, um, I'm— but I'm learning it because I had to cut some staff to move into this new season. So I've got these apps on his phone, I'm just watching everything, and it's like there's this point in time where he crosses over and it's no longer him.

Hmm.

Now I know that's scary. Disassociation, autoimmune encephalitis. Now there's like so many words for it and it's all the same thing.

So you, so you slowly figured it all out.

Slowly figured it all out. And I am just trying at this time to be positive about that because like processing trauma, trying to look at it, but we ended up getting involved with the juvenile detention center. We got in with the most, I don't know, evil person. That was a judge. And I don't understand how that's possible, but I thought juvenile courts were supportive. You know, and helpful and, um, there for parents to access resources that they weren't able to access on their own. You know, like I did need help, um, in terms of like medical help is what I— and so, but no, no. And I just— anybody that thinks, oh, call the cops and file or do anything involving the law enforcement will help your child, no. Just do not try it because once you get in that system, it is like you talk about trying to solve PANDAS or at least get some help for that. Try to solve juvenile, solve juvenile court at the same time. It will—

I can't, I can't imagine. I can't imagine what you went through. Those are two big whammies to deal with.

And my, my situation's flared up. I have to drop my nerve blocks, Cymbalta, Lyrica, Flexeril. I have to drop all my meds because my money's You know, funding's gone down. I gotta pay this IVIG. I gotta pay these lawyers because this lady is shady and there's something going on. I gotta get a business lawyer that, I mean, anyway, all that to say is that when they, when she put my child who had just had IVIG in solitary confinement for 5 weeks in a cell. 7 by 5 feet.

Oh my God, I can't imagine. I can't imagine. That's horrible. Oh, I'm so sorry. Oh my goodness. No, that's horrible. Yeah, that doesn't sound too helpful to him.

I mean, I usually can talk about it. I'm sorry, it's just—

no, you're allowed to have a moment. This is emotional.

Yeah, you can't get to him, you can't get him out. Like, this child has never missed Thanksgiving with his family. This child has never even kissed a girl to this point in time. This is an innocent child with a horrible syndrome that nobody understands, and it's just like— so anyway, Of course I'm furious. I'm, I'm furious because he had an ankle monitor, which was my idea. It didn't work. You know, I, you know, I think it was some kind of thing where they were covering everything up. I don't know. But basically at the end of the day, I was like, if I don't keep custody of my child, he's not, he's not gonna make it because this woman wants him to go to some psychiatric facility forever because he has insurance. My ex doesn't understand how really this— what's going on. And so I just went into full mode and I drove to a different PANDAS conference to get him a different PANDAS doctor. I found out one about one in Atlanta. He went to stay with his dad for a few months and, um, I refused to sign that petition. About dependent neglect, never ever sign anything in juvenile court. And I cannot emphasize that enough, but of course I didn't sign it because I'm a business owner. I don't sign things. And then I read it and I'm like, inaccurate anyway. She's furious. It's personal, you know? So I went, I had to go incognito. I had to get a whole new group of people, you know, it was like, I gotta cut everybody. That knows what's going on here and get a whole new group. And so I went to Atlanta and fortunately Dr. Trifiletti agreed to help. Um, got a new lawyer that wasn't involved with all this. And so she had sued this judge. She was able to get rid of the judge. I issued 27 subpoenas to people that were involved. The case was dismissed. I had him back and I've got blood work. By the time I get it back, I was so motivated to figure out exactly what was causing this thing because the IVIG— the IVIG was wearing off. You know, it wears off. Now we know that they've got to have multiple IVIG sessions.

Hmm.

I guess looking back, I'm kind of glad that's how it happened because this, uh, doctor had said that he knew how to treat it without IVIG and that to treat pain, this, you had to treat the infection. So I had to find the infection, but the only problem was I didn't have a lab or, you know, any place to like test anything. I didn't even have any way to do it. And so I decided to get all of my son's records since he was born. I got them from the vault and I pulled the full legal medical record, the new labs that were coming in. And I just started like putting the whole story together. When he was born, he was born jaundiced and he had a lot of issues. Even though I worked out every day, didn't drink, didn't smoke, ate like perfectly, was happy as a lark in our marriage at that time, still born with jaundice. I always thought that was, you know, confusing. And then ear infections, pneumonia, double pneumonia. And as I read it, you know, the older they get, you forget about these things.

Yeah.

Read it again and you're like, oh my gosh, I forgot that. I forgot that. And as I'm starting to read the words, because I've heard enough medical now that I'm like, okay, I'm reading and I'm like, okay, well, this note, it was like from 10 years earlier, said did not respond to Zithromax. Well, by this time in life, I know what Zithromax is. And now I'm starting to think that did not respond means resistant because I'm like, okay. So I keep reading and reading. It took 3 days. That's probably part of my OCD at the time, but compulsion. But 3 days I sat there in that couch, and by the end of the 3rd day, I just had this awakening. Everything assimilated because what I was doing was reading a story of a child that had contracted something very young, maybe was born already somewhat immunocompromised. We don't know, because how do you get ear infections at such a young age when I breastfed and I kept him with me? So I started like asking myself those questions, like, how do you just get an ear infection? I'm like, what, where did it come from? You know?

Right.

And your breast, he breastfed until he was 2. So it's like, oh, it's doing all the right things, you know?

Sure.

Healthy. I was eating right. It was no problems in marriage. So, but fast forward at 2, he got really, really sick and he started having like a lot of really high fevers, like 105, 100, 100, 105 years, and pneumonias and stuff. And then as he aged, those fever numbers— because I ran this gargantuan spreadsheet with all these, I just was looking for any pattern. And so the fevers, as the fevers fell numerically, there was notes on behavior changes.

So interesting.

I was like, bam, because I'd heard misdirected immune response, but I didn't grasp that until I saw that in front of me. And I was like, wait a minute. So this immune system, fevers are supposed to kill the infection. If it didn't kill the infection, it What, what happens next? Look what happens next. Does anybody know this answer?

I certainly do not.

Well, I don't think any— no, I, I really don't think anybody knows this answer because, you know, the thing is, it's like, well, you would think death, but he's not dead. So how do you explain that? Like, this infection that can cause this aggressive of a response, yet now he's not dead, but he's acting crazy anyway. It starts to connect for me because in the third grade he, it was, and the notes were so awesome because they were like jumping around in school a lot. I mean, cuz you can watch the evolution cuz in the second grade notes you saw he was raising his hands, wasn't listening. So it wasn't just that it happened overnight. It wasn't this onset. It was like this gradual sequela. So by the third grade he's diagnosed with ADHD. 4th grade, I'm taking him in because it's 4:00 AM and he's waking up not being able to catch his breath, diagnosed with anxiety. And I'm like, I remember with the doc, but you know, you just leave the doctor's office and you're like, okay, he's got anxiety, this is what we do. And you move on. You don't ever like ask for the note and read it. So anyway, this is what happened. So as the physical symptoms left him, he no longer got sore throats, ear, anything, even when he was The last time he had physical symptoms was when he couldn't catch his breath in the 4th grade. So he's never had a fever, never had anything from then on. It's been just straight psych. Yep. And so ours were very extreme cases. So I put all this together and as I'm doing this research, my adoptive daughter, who is sweet as pie. So this is summer 2014, comes downstairs and She has been acting horrible, slamming doors. I hate you. And I'm like, do you have PANDAS too? Because I'm like getting it all confused. It's too much.

Sure, sure.

She's like, I don't have it. I mean, and I'm like, oh my God.

Okay.

You know, but couple that with her higher heart rate. So she'd been in for anxiety. She'd been worn a heart monitor, was staying up at night, had lost a lot of weight. Anyway, she comes in and leans down and she's like, my ear hurts. There's a boil behind her ear. So I'm like, what do we have? Because this is not my genetic— this is not my genetic child, right? So I take her to the doctor and I'm starting to learn the ropes, and I'm like, yeah, can we get some antibiotics for that boil behind her ear? And can you culture it, send it to the lab, find out what it is and see what it's susceptible to? Because I'm like, no, we're not going to do all that, but I will give her some antibiotics.

And I'm like, you're like, I want to know what this is.

I like, you could— all you have to do is take it. It's just like, yeah, most people probably wouldn't even ask that question. So he probably thought, thanks, I'm nuts. But he did give her antibiotics and within 4 days her boil went down and so did that oppositional defiance disorder. So I was just like, okay, I'm starting to believe this thing, so I gotta find out what it is. The only thing he has at the time in all these new labs is Mycoplasma pneumoniae, high strep pneumotiters, which is Group B strep in the nasopharyngeal flora, which did make sense because he, he did get some redness there even though he didn't have any runny nose with sinuses, nowhere he knows of nothing, but he'd get red there. Um, and then he also had high thyroid antibodies. So I'm like trying to put all this together, but of course I'm fixated on this, the nose, because of the sinus history of his dad. And come to find out there's one strain, 19A, that is resistant to all antibiotics appropriate for children. So of course I'm like, well, this is it, it's got to be this 19A. Because so I get in the levofloxacin, which is Cipro, which is like everybody thinks that's Awful. And within 2 weeks, it was really hard to get it to you. So I tell this story like I just walked in and got it somewhere. That's not— it took much, much strategy to get that. But it was 2 weeks. I had never seen him so calm. So I knew I was onto something, but then the 2 weeks was over and it came back. So we went to an ENT and we got 2 more weeks and it happened again. So it wasn't a fluke. So I'm like, okay, so what's going on? And so I'm out of options to research with this 19A. It's like, we can't leave them on Levaquin forever. And what are we going to do? Where— what happened to the kids that didn't get treatment for 19A? And I go over and I look and I find that this researcher was studying PANDAS. And I was like, just my, my brain was just, you know, making— and I was like, got it. Okay, so what do we do? You guys don't know. We are in trouble.

I don't know.

You know? So I'm like, okay, well anything that they've looked and done. So I reviewed every, all the angles that they were headed in and I was like, okay, they're not really getting that far with all this. And the kids don't seem to be like getting and staying better. I, I'm gonna go on my own. So I'm like, what about this mycoplasma? I don't know much about it. That, that was a positive in him. I'm looking at mycoplasma. There's really no research on it here in the States, very little, which is odd because there's some over from India and other countries. And so I'm, I'm like calling the one guy that wrote the paper, but before I called him, I read this 60-page paper and it was called, um, Mycoplasma: The Emerging Pathogen in Autoimmune, something like that. I don't know. I read that whole thing and it was really hard for me because I'd been reading about adipocytes and fibroblasts and cellulite, and now I'm switching to like all the immune cells again, which I hadn't had forever. So I get my genetics book, my old, old immunology book, and I'm like, I get through it. And I, for some reason, for some miracle, I understood it. And it was a miracle because I don't— I understood it because it made perfect sense. If there is a bacteria that has a protein that can adhere to our cellular membrane and then penetrate our cells. That's a whole new day because that means that antibiotics can't get to it. That means that antibodies can't get to it. And then furthermore, I learned that the antibodies that are created while it's trying to attack this organism as it infects the cell, those antibodies become confused because they are creating— they are looking at the proteins on the mycoplasma and our cells. So they create this— this antibody is formed against our own tissues and also the mycoplasma. So it's like, that's where these confused antibodies are coming from. That's why our own body is attacking ourselves. And that is like probably causing a lot more diseases than just the pandas. So could it be causing my complex regional pain syndrome? So I start to get like this, wait a minute. I mean, it's far-fetched that this one thing would be causing all of these things, right? So it's like, but this glimmer of hope, what if it is? What if it is this one thing? Sure, you know, I gotta learn more about it. So I reach out to this guy and he's like, I no longer research this organism. If you want to get tested for that, reach out. And I'm like, oh, they, they won't talk to me anymore. I think I'm crazy by now. So at Vanderbilt, because of all those doctor's notes, so I call the research department again. I don't know what triggered me to do that, but I call and I talk to a researcher there who is studying Chlamydia pneumoniae, which is also an intracellular organism. And I'm like, there's more than one of these things? So the light bulbs just start coming on for me, and I'm like, so if they all get it, that— are they all doing this?

Is it this—

these things that's causing all these problems today? He says to me, there's really nobody in this country that's studying Mycoplasma pneumoniae that I know of, either than Dr. Garth Nicholson. And I'm like, dum-da-dum. You're like, here I come. I'm like, why is there only one doctor? Like, I mean, that's weird, right?

It's like, for sure, for sure.

This organization is research. I mean, how many things, you know, anyway. So I get on his website. It's not owned by— I mean, it's owned by him. He started and funded his own institution called imed.org. And I honestly did recognize his name. You can call me a nerd if you want, but I remember back in college he was the one that actually wrote the paper describing the phospholipid nature of the cell membrane.

Oh my gosh, sorry. No, no, you know what, you were, you were the right mother for your child to figure this out. That is all I can say because all these science terms are like twirling in my brain right now. Well, it's like he made it into the textbooks, this guy.

And so, you know, I didn't realize this at the time, he's the most cited scientist in the world. He was like over Anyway, long story short, I get on his website and I'm like clicking and reading and I'm clicking and reading and I'm starting to cry because I'm like not believing what I'm reading, but also believing it because it's such a perfect fit. And what I learned that day was that I, we, our family had been exposed to a pathogen when my son was 2, um, that had been created, created in a lab. Now, now today that's not so far-fetched, but 3 or 4 years ago when I started saying this, people did look at me like I had 3 heads. But of course I pulled the patent and read it. Um, I mean, this is pathogenic Mycoplasma pneumoniae. Pathogenic mycoplasma, and it was genetically engineered back in like the late '70s, early '80s. And, uh, DOJ, Baylor, Texas prison systems, Army pathology lab, they teamed up and they were testing this genetically. And maybe it was a gain-of-function research thing, maybe it was that too, because, you know, if you could make something heat resistant antibiotic resistant. You know, if you can splice— and what I mean by splice, cut out a section of one virus and put it into the genome of a bacteria— then those viral proteins can express and cause a physician or anyone to think that it's this virus that is the root, which has happened because you see all these societies— because HHV-6, EBV, and even some of the proteins of the HIV envelope were genetically spliced into these powers of mycoplasma strains. So 10 to the 6th, 10 to the 7th, and 10 to the 10th. And so 10 to the 6th is the one that we had. I recognized it right away.

So tell us how everyone is doing today and where you guys are at now.

We're doing phenomenally well. I don't struggle with complex regional pain syndrome anymore. I'm not in a wheelchair. I'm not on any pain meds. My son is halfway through college. He has got a brown belt. He does guitar and he's doing great.

Oh my gosh. And what a journey you took to get there.

What a journey. Yes. Yes. Oh my goodness.

So tell everyone listening what your advice would be to figure out what is going on with their child.

Um, I would just reach out and contact me at Elizabeth@WhatsWrongWellness.com because I've got over 400 research articles and we can kind of prepare something for you to take to your doctor and maybe discuss it. But yeah, just listen to yourself, trust yourself, you know, advocate for yourself and your child. If you think something's going on, there's something going on.

Mm. Well, and I love that you just kept going until you found answers. I find that so remarkable and I want you to know that. Thank you.

Yes, absolutely. There's no giving up on our kids, is there?

No way. No way. Um, before we wrap up, is there anything else that you think is super important to share?

I think it's really just really important to understand that like this is, um, our, our current, you know, situation, and that the more we can educate ourselves and educate others, you know, The better we will be as a country.

Oh my goodness. Well, I appreciate you sharing your story and your time with me today.

Thank you so much for having me.

It's been so nice talking to you.

Absolutely. Bye-bye.

This is Rebecca Green reminding everyone to spend every day laughing, learning, and loving.

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