In this Episode of Love your Diagnosis, I talk with Elizabeth Harris about her diagnosis of CRPS. and her son's diagnosis of PANDAS.
Elizabeth was diagnosed with complex regional pain syndrome, experienced hair loss, limb numbness and more. Elizabeth decided to take matters into her own hands, quit her job and dedicated her life to finding the real root of her son’s health issues. She discovered that both herself and her son were infected by a bacteria called Mycoplasma Pneumonia and was able to follow a treatment plan to finally solve their health issues which includes antibiotic treatment and some interesting facts about antibiotics and gut flora. They aren't all bad - who knew!
Today, Elizabeth uses her experience and her expert wellness team to help others at What’s Wrong Wellness and is also the author of What’s Wrong with My Child and America is Infected, which became an Amazon bestseller.
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A little side note:
These shows are meant to create food for thought for people going through similar situations. Planting seeds of information about things that perhaps you never knew could and might assist in treating and managing the symptoms associated with your diagnosis.
Alternative treatments are out there to be used, alongside allopathic medicine, or instead of.
That part is completely up to you, but gaining knowledge is the first part in empowering yourself back to health.
We have Elizabeth Harris on the call with us. Hi, Elizabeth.
Hi, Lainie. How are you doing today?
I am spectacular. I've been so interested to meet with you. We've had a little bit of email conversation, but so interested to hear your story and go deeper into what actually it is that you're dealing with and for your son, long, long journey. So I'm going to get you to just frame it out by basically saying, what were you diagnosed? We'll talk about you first, and then we'll get to your son after that. Is that okay?
Absolutely. And you know, it's so interesting when I got the invitation, because I'm working with a researcher over in Australia now. You know, and he's very brilliant. And I really appreciated the, you know, information that he's been getting over that country because we've been comparing notes, but I was diagnosed with something called Complex Regional Pain Syndrome, formerly known as RSD. Reflex Sympathetic Dystrophy, and then it morphed into this CRPS and I'm not sure if you're familiar with that diagnosis or not.
I'm not but how long ago was that?
elizabeth 1:10gnosed, I think it was around:
And where did it come from? Did it just pop up overnight? Or was it a series of things that were starting to happen? what was your life like before and after that diagnosis,
elizabeth 2:06hat was going on. But then in:
like when you say table it, you just mean you just kind of put it to the side?
Yeah, I put it to the side while I was on the medications, doing the nerve blocks, and so I just didn't allow myself to obsess over it just because it could have been so scary, to the point where it would have distracted me from everything else. Because I mean I was like 36 or 39. It's like I'm gonna be in a wheelchair and commit suicide. And I'm like, Okay, this not look good. And honestly, it didn't make any sense.
So I'll just take you back. Sorry, Elizabeth, but from a pinky that's pusy and infected to a wheelchair. There's a lot of story in between there. How did you get from a passive finger and tabling it to, you know, the symptoms of needing to be in a wheelchair and wanting to top yourself?
Yeah, that's the progression. So like when you get to stage four, so this thing spreads. I noticed it because all my hand so my muscle is just like kind of wasting. I'm noticing that and it's something on my wrist and then it's like I'm noticing me over like see to nine months, it's like it's going up my right arm. I like literally like something spreading in me, you know. And the reason it hasn't progressed is because I figured out what was spreading and we got the treatment, and I no longer concerned about being in a wheelchair
Well, you actually, you kind of mentioned there was quite a bit of stress you were travelling around, or, you know, you were kind of living a life that was maybe quite active. Were you eating well.? Was there anything else that would have been adding to the spread of this infection?
No, . Absolutely not. Because I was like, in health and fitness, I was a spa owner. And so like we do body contouring, you know, weight loss for years. That was my career personal trainer. But it was very interesting what I ended up figuring out because I did go through that season. You know, where I stopped this and change this and added this and documented at all, you know, I'm not saying it really made that much of a difference, which makes sense. At the end of the day, what I figured out what the route was, there's really nothing I could have done, you know, and that's just the reason that I do do these shows is because I think I spent way too much time as the chiropractor, at the dentist, I spent like all these years at the wrong place. And even when I got to the right place, they wouldn't give me the right treatment.
Lainie 6:27d what what year was that? So:
I was doing physical therapy three times a day. I mean, I was doing my own physical therapy. I was I mean I had it from the therapist and I just continued on that path. But honestly, my risk just would have been I didn't actually go to a professional that figured it out for me. I was going to a great pain management doctor I really liked him. You know Gallagher he gave me a little bit he knew I was scared of getting addicted but it looked like I was going to get addicted anyway because it's going to have to become on horse tranquilliser ketamine eventually. So I was like, it was prolonged the addiction, you know, it's because pain pills just made me feel, I don't know, angry and flat and all that. And so the way that I found out what was causing my disease was when I came to realise what was causing my son's disease. When I found out for him, I thought just for a fleeting moment, because his symptoms were so different. Could that be causing mine? And it made total sense, because if there's an infection in the bloodstream that hadn't been found, and then I broke my pinkie, and then it like, entered, you know, into my nervous system, which is very, I mean, seems obvious to me, I can't believe I went to so many doctors and that wasn't like his but. And I was just, I mean, I think that's the shock of the whole thing is realising you've gone to so many doctors, and it was this easy. Once I tried some antibiotics, like on day three of zithromax, I could bend my wrist, day three,
the drug is designed what to just kill off the bacteria in the blood system that was causing the infection?
Yeah, well, actually, yeah, the organism gets in the tissues. And that's why people with complex regional pain syndrome actually do have that particular syndrome spread to like the other leg or the shoulder anywhere, there's an injury and they don't know why. But Fibromyalgia they usually have that depression, chronic fatigue, all those things that come along with this syndrome, or this organism. Fortunately, I wasn't getting those but the treatment is not just short term, it's very long term. I knew it was really, you know, a lot for me to try to understand how this thing worked after we were taught so opposite for our whole lives.
Did you have to be on antibiotics for quite a while then? Years years? Oh, god, that's a whole story about your gut flora as well anyway, but we won't go into that at this stage. How did they test that the bacteria and actual the organism had actually died? Did they have to keep testing if it was still there to know to keep you on the antibiotics or was it all just a bit preventative and guesswork?
Well, you know, I just because I'm a scientist, I did want the positive diagnosis, but you know, you can Get it in tissue, and it's a polymerase chain reaction tests like serology results aren't really gonna always be accurate, especially if it's chronic, or if the physician is not looking at the IgG. And so I read all the information research, and I went into the end, and I said, Hey, got this black spot in my throat that came up the other day. And I think, you know, what, if it's cancer, I think we need a biopsy, and can you check this box on this paper and use this test you were brought in, because it had been overnighted. To this lab, please? Well, we have a lab that we use for this. And I'm like, harsh, because I knew that. I don't know. I didn't trust him in the lab based on everything I'm reading. So I'm at the grocery store an hour later. And he calls me and I'm like, This is my last shot at getting a positive test. He calls me he's like, Hey, what was the name of that lab again, that turns out the lab we use isn't out, you know, that's on their formulary. And that's what I came to learn is like this test for this organism is not on any formularies it's not anything that they look to as causational for these things that it causes. And so that's where the conundrum is, and the confusion.Lainie:
So what's the organism called?elizabeth:
Well, this particular organism is called mycoplasma pneumoniae. Now mycoplasma pneumoniae is like walking pneumonia. But this particular organism has been genetically altered or modified. And so basically, there's parts of a virus in it, which is why there are some groups of people that believe HHV6 causes chronic fatigue, some people think it's the EBV. But in fact that EBV and HHV6 is actually spliced into the genome, along with the transposon, that prevents this organism from being killed by a fever, because there's bacteria that lives in a volcano, and it can survive really high heats. And all this was done back in the 80s. And tested in one of our prison systems over here, and also in the Gulf War. And so the Gulf War Syndrome, the fibromyalgia, chronic fatigue, that children with autism, and it's just spread pretty much everywhere.Lainie:
So if if people you're saying the test isn't prevalent, if people listening to this, are feeling that this might be the cause for them, can they go to a doctor and ask to be tested for this?elizabeth:
Yes, it's not an easy path. And that's where I felt like before I did this tour, that I needed to have a solution to provide people hope, you know, because it is so daunting to try to fight everyone and explain and educate with your your your education might be in music, you know, it's not fair. So that's why we set up the wellness company. So anybody that thinks they might, should reach out, and I'll try to walk them through the process. But we can also scan, we have a scanner, and so yeah, but I mean, it ends up that most the time, it's multiple organisms.Lainie:
So your clinics called What's wrong wellness? We'll talk about that at the end, though. What's wrongwellness.com? And you you take people from all over the world? Or is it just local?elizabeth:
all over the world?Lainie:
Fantastic. I looked at the website, it's amazing, amazing the research that you've put into this living, if anyone's going to have a calling, it's when you're sick? And you come through it and go, Ah, I've got to tell people about this. Yeah. So. So I want to get onto your son, but but like, are you free of your diagnosis now? Or is it still being managed every day?elizabeth:
Well, here's the thing is like, in my free from the RSD syndrome, I don't know. Because come to find out that is like an autoimmune disease, which everyone's is. And what we do is we develop these confused antibodies to these organisms, but also to our own cells, so you can't get rid of an antibody. So it's important to find out, you know, kind of what organisms are involved in the disease process. Because if you're exposed to those particular organisms later in life, you can get a flare up, you know, hopefully, you would know quickly what's going on and be able to, you know, squash it. So, for me, especially when my son lives here, he's 22. You know, he's out and about with people. And so I try to, I mean, I stay on prophylactically. Just to make sure I don't contract something, but I mean, I own a spa. So I'm with public all the time. I don't bring something out yet.Lainie:
Okay. So when you say organisms, it could be anything, it doesn't matter. It's like, it's like anything that's potentially out there that could cause your immune system to flare up is an organism. Is that what you're saying?elizabeth:
Well, and here's the thing too, is like it's it's a misdirected immune response. So basically, it's an organism that you've been carrying in your tissues inside of yourselves. Chlamydia, pneumonia and mycoplasma pneumonia, I mean, like really a Bergdorf Yeah, and I mean, there's several there's about 10 that we see most of the time. You know? And then it's teasing that out and a group A strep and group B strep, you know, are key players, but they're not necessarily typically the root, it's that when you can track those two, and you have the underlying, there's like exotoxins, in this big war. It's just like, you know, it's just like layers and layers. Yeah, to your point, I don't, I don't feel like I haven't received but I know I can't get infected with those organisms. Now. If I caught Corona, for instance, I would have regular symptoms, fever and all that because my body has never been exposed to that organism and I cleared the other route. So that I would have I can have a normal immune response to that.Lainie:
Okay, that's incredible. So many people are going to be interested in this. There's a lot of autoimmune issues out there. So does it have to be a specific autoimmune disease that your clinic is helping or it's it's just autoimmune diseases in general?elizabeth:
anything. We usually get the really tough cases like post COVID neurological stuttering to numbness, double vision, you know, because it's an underlying something that was there. And so I get Yeah, so Parkinson, I mean, pandas, any really anything, any psych, psychiatric, because that's all infection too, I would say, maybe there's 20%, it's not, but you know, this like symptoms, that that's just like in inflammation, or encephalitis in the front part of the brain, as opposed to the back part of the brain where you're going to see more like feeling neurological symptoms. So I mean, it's just it honestly, the day I put it all together, I feel like oh, my gosh, of course, what else would cause disease, other than infection?Lainie:
Well, inflammation, trauma, you know, the list goes on of what other people researching stuff. It's this symbiotic relationship of. Infection, that causes the inflammation, right? So your that's where your stance is the infection comes from inflammation.elizabeth:
And also my other stance is that it's opportunistic infection. And so we do have trauma centres, you know, in our brain, and my son ended up with PTSD, I was able to watch all this, you know, and so these organisms, like kind of sit settle in to the weak parts. So if you've been through traumatic experience, you know, that it's got a lot of energy around it. And so, I mean, I've noticed a lot of that, you know, combination, even Dr. Garth Nicholson did recommend back in the 90s or early 2000s, that the gulf war vets with PTSD be treated with doxycycline, which is what an antibiotic,Lainie:
Because of the infection, why, because they're infected by trauma?elizabeth:
They're infected by the micro plasma, which it paid with me here. So when you have an overactive immune system, so for instance, my immune system never shuts off because it's trying to kill something that it can't get to because it's inside of myself. So I've got this just onslaught of antibodies just like hammering my own tissues. Now if I had like, I don't know some strep pneumo that was up behind my ethmoid sinus because I used to have sinus infections as a kid, or I have it still in my eustachian tubes and it's gone dormant, you know, it will activate any of this. We don't really know where it's gonna colonise, so it could colonise in the kneee, and the disease can be rheumatoid arthritis, you can colonise in the kidneys. Now with the trauma 100% agree because cortisol and that's the very important that you brought that up because chemotaxis is the scientific process of an organism fleeing from something that is stronger than it, for instance, a chemical in the bloodstream. So we're looking at the bloodstream, and then we've got the tissue. So if we've got an increase in cortisol, which is the stress hormone, just chemical, then what does these organisms do burrows away from it. flaring up the symptoms.Lainie:
So interesting. Okay, well, let's go to your son then. So he has or he had pans or pandas. And they acronyms and I'll let you explain that. And how old was he when, when he developed symptoms and what were they?elizabeth:
Well, he was 10 just turned 11 And he had a case of strep throat group A strep. You know, at this point in time, I was not in a deep and doctors I was knee deep it cellulite. That's where my brain was, but, but I did remember a little bit about rheumatic fever from school. And so when a couple weeks after he got strep, and it was interesting because it was in his stomach, his stomach really hurt. And so he took the treatment for that physical symptoms went away . BUt then within three days. He just literally went, I mean, even he knew the words psychotic. It started with buttoning a shirt up and down, which I now know was like acute OCD, like an acute onset. You know, walking back and forth against L over the transition strip. 27 times had to leave with right foot build This huge tent, like not just A TENT. And then by day three, and I'm calling the doctor, like, I think something's wrong. And he's like blowing me off. But that By day three he is crouched by the Christmas tree. You know, he can't, he thinks somebody from the outside is looking in. He had anything like this before you did have ADHD, and some tactile sensitivities and night terrors, you know, as a little child. So like, after the third day, he thought bugs were crawling on him. I called one of my colleagues, and he was like, yeah, there's something really wrong. It's gonna call the doctor and I explained it. He said, This sounds like an acute onset of pandas, which I didn't know what it was at the time. So I Google it, scroll down and learn that it's an acronym for paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. And there's only one link on it because it just been identified 2010 In June, so I'm flicking through it. And I'm like, okay, common denominators, they all have high a DNA speak titers, which is odd, because that's Group B strep. But okay, noted. And the other thing is just that, you know, really, there was not anything known about it, I'm thinking that it's like, My child has cancer, or the oncologist say, didn't even know, existed, unbelieving, so they brought in a psychiatrist, you know, and it wouldn't be till three years later. And I just want to encourage your listeners, it wouldn't be till three or four years later, when honestly, I threw caution the way to win on my own. Because I've been to one of doctors between two of us, like 50, or 60, we had one that helped us the most. And then I put it all together, but I'm just gonna tell you when I ordered that full legal medical record, from since he was born, from his birth hospital, every appointment, I put them in a three ring binder and the information that I gleaned from reading that so slowly, I was shocked. It was shocking, because not only did he have group A strep, when he went to the hospital, he also had pneumonia.Lainie:
So you kept all this medical information from the doctors. And you put all the pieces together from that.elizabeth:
I didn't keep it all. I obtained it all. Because when I was just like, there's something missing. Like there's a pattern here, I'm starting to see this happen. So I learned how to just call medical records. And I checked the box for full legal medical record. And as they all came in the mail, and on the email electronically, I printed them out, put them in binders in order.Lainie:
Did they not tell you we had an pneumonia?elizabeth:
They did not tell meLainie:
Oh, I see what you're getting at. So. So there's all this hidden information that was going on behind the scenes that they weren't explaining, which is great and adding it together. Alright. So we'll get to the crux of it. You have then gone. Okay, I'm going to take this on. I'm going to work out what it is. And then that's led you to finding about infection for both of you.elizabeth:
Yeah. Because like we didn't, I said, I just need labs. He'd been 27 psych meds, Psych hospitals, detention centres. I mean, it's brutal, solitary confinement for five weeks. Thank you Judge share Guffey for the PTSD on top of the pandas. I mean, it is just unbelievable the way that the system handled it and the lack of support. And so when we got finally got a doctor that would run enough lab work, the only thing he had was a mycoplasma infection, which I mean, it was just walking pneumonia, and it's not really a serious thing. And so I kind of blew it off because he also had high strep pneumo titers. So 2 things, high thyroid antibodies, none of that makes it for these level of symptoms. Ultimately, I did get his genetics testing done $10,000 test did not have the gene for any of his diagnoses.Lainie:
That's really fascinating. What was involved in, when you found all that out? What action did you take to actually then start to either get him off all the meds that he was on and treat the infection, and treat yourself so that the symptoms disappeared?elizabeth:
It was brutal, because I just didn't have any guidance. You know, I gotten to this one point, when you read the book, I think you'll think it's really great because I found this 19 a superbug and I thought that was the answer. And I found this article from this doctor peeker. I said, the only antibiotic that can be used for this organism is level one, in and it's like a Chloroquine alone, and it's like really considered kind of dangerous, I guess, because of the, I don't know, ankles and tendons popping. And so I was like, I gotta have this because he's like running cars through buildings downtown. And I'll take the ruptured tendon over this. So I go into the area and tried to go to like a different hospital. They don't have records. So it tells the story and he gives it to us and within a week or two, I'm like, I couldn't believe it. My son was like as normal as I've ever seen him that he stopped it and OCD start coming back. Immediately.Lainie:
Right? So he's he's still on antibiotics now as a treatment prophylactically. Now, we will touch on a little bit about how I mean, there's so much scientific research and information out there about how antibiotics actually completely fucks with your gut flora. And all the the microbiome, how is that? Have you found with you and your son that you know that that you've had to restore that? Or has it affected you in other ways? Because it sounds like it's quite potent antibiotics that you're on, and you've both been on it for years.elizabeth:
No, and when I came to believe, with all my heart and watch over and over again, is that the diarrhoea and the abdominal bloating you get from the antibiotics is a result of the Herxheimer response, not the antibiotics, like wrecking your gut. Because if you look at it logically 74 trillion cells in our body 100 100, how many bacteria viruses, millions, millions of millions. So every antibiotic does not. It's not just antibiotic, which is what I used to think I need to know there's penicillin, there's tetracycline, and there's all kinds of classes, and they don't just blank it leave murder every single pathogen. They're targeted, the mechanisms different. And so it's like, you know, and even at that, it's like, you don't have to go and do all of the antibiotics at once and completely flush your gut flora, you know, he just, it's low dose, you know, and it's slow, and it's monitored, and the activated charcoal actually, like mitigated all that. Now, I mean, we were really infected. I think every cell in our body was infected, because we've had it for since 2003. And so it was just for us, there was so much herx response, and that was the science fiction of the whole thing.Lainie:
Now I know what hook thing is, but can you just briefly explain what hooking is in this example,elizabeth:
it is the fact that when you intentionally target an organism that you believe you have, if you knew, and that organism begins to die, then it releases, basically, we call it poop and pee. It's actually just like little baby cell parts of dead cells. But that sounds too gross. And so that's a foreign invader to your body, because your body's almost become immune to the fact that that organism is in there. Because it's been there so long, it's kind of adapted, but once it breaks apart, then it recognise it as foreign, launches a huge immune response. And believe it or not, practically, the longer you stay on, every symptom we've ever had of this organism unwinds backwards, it is uncanny.Lainie:
It's good for people to understand her thing, because when they're trying to put something back into alignment, there's all these other side effects and they get a bit nervous. I've seen it with friends of mine, and myself, you know, things have to get worse to get better, I guess, if you're going to explain it in layman's terms. So that's kind of what herxing is about is, you've got to go through that detox that dying of whatever this organism is causing, in order to for you for your body to go, Ah, this is what it's supposed to feel like without that.elizabeth:
It's insane. Yeah, it is. It is just amazing. And that's why I coach people because, like, to your point, it's very, I mean, you can like skip days, you know, you can lower the dose(in regards to antibiotics), you can use charcoal, you can use Benadryl, you can use all kinds of things to mitigate those symptoms. So you don't have to be like miserable.Lainie:
Now, there's a little bit more I want to get through, did you have to make lifestyle changes while you were going through the antibiotics in order to sort of manage that it doesn't come back? Or really is just the medicine does the work? And it has nothing to do with other parts of your life.elizabeth:
I mean, just to be perfectly blunt. I've been doing this for a long time now. And I have just completely 100% Let go. Because it was always always a personal trainer. I was the turn your calories in girl, I was the you're losing two pounds, let's get you gain one. I mean, that was me for 10 years. And now I just stepped back and I'm like, Oh my gosh, like this isn't that wasn't it at all. That was not the right approach at all. And as I watch people get better, honestly, they start making choices, their own choices better on their own, and it's just like this waiting game.Lainie:
Have you still got this diagnosis? Or you are you're free of it. You're just managing stuff now like, do you still have CRPS and as your son still technically have pandas? I don't know.elizabeth:
Because like, I didn't go back to the doctor since 2012. You know, and so it's like, do I have the symptoms that I had? No, but I will tell you this much. I think he and I got a little too high on our horses because I was good for eight years. And so I kind of stopped taking the antibiotics. And I thought I'm good, you know, so did he he actually started stopped taking for me because he was like 21 He was like, I'm cured. I got this and I was like well okay, you know You scared me when he caught strep brown gave it to me. Boom. So we've cleared it again. So it's like, I think it was a reminder of how bad this thinners and how awful pandas is.Lainie:
And also, potentially, that your immune systems are quite sensitive as well, like not everyone goes out and catches strep.elizabeth:
No, well, that's true. I mean, some people don't catch it.Lainie:
Look, it's just amazing. You've written a book called What's wrong with your child, which is a best seller, I believe. And why wouldn't it be you've done the race that you've done the work, Elizabeth Oh, my God, a very good read. I cannot wait to read it actually. Because all this is very fascinating to me, if anyone listening is feeling like they want to reach out to Elizabeth absolutely do it. One last final question for you, though, is, would you say that having this even that was extremely trying, and it took ages and, and it was pretty much nearly pushed you over the edge? Would you say this is the best thing that's happened to you? Because of your life's purpose now?elizabeth:
Yes, I mean, absolutely makes me tear up a little bit, because it was such a hard road. And I don't know if like if I hadn't had every one of those trials, if I would have been able to keep going, but I'm a fighter. And so it just, you know, I mean, it's not fair. This is such an injustice to people that are sitting there having to live their lives, chronically sick thinking, it's something they've done wrong, maybe they have played a role in it, you know, when it when there's this whole other world of information, you know, I mean, that you get better. And so yes, absolutely. I am very excited about this next season of life. I do want to remind everyone that we have a doctor over there, Dr. Ivan Hooper, and he also can scan in Australia, that side of the world. So yeah, we just got his computer set and we've got everything set up for him so he can scan over there and we collaborate on the results. SoLainie:
incredible, incredible. Generally, if you're feeling off and you can't find an answer, hit you up.. Love it. Love the fact that it's so broad that and that doesn't scare you off just like Yeah, bring it on. Love it. Love it love it because so many people out there just feeling a little bit defeated by the fact that they cannot find answers. And yeah, after the last few years with with this SARS, whatever the fuck it is, excuse me, very un ladylike,, but yeah, people are gonna find that there's probably even more that they can't find answers to after these vaccinations and things like that. So, bless you, Elizabeth Harris, for bringing this work and all the pain and beliefs that you've brought to your work and joy and frustration into our worlds. I honour you for that. Thank you so much for taking the time to be on the podcast.elizabeth:
Thank you so much for allowing me to share this extreme story. Hopefully you can help so many. I really appreciate it.Lainie:
Take care. Great to talk to you. Thank you. Bye bye bye
Transcribed by https://otter.ai