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In this episode of Patient Journey’s we’re joined by Amie Skilton, a long-time Sydney resident who found herself having to navigate this frustrating and perplexing syndrome to ultimately find a path back to wellness. Throughout her story you’ll also hear commentary from a range of relevant experts to provide important insights along the way. Amie first went on to describe her life before getting sick.
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Danny Urbinder: When we think of the underlying causes of chronic illness, we tend to think of factors such as diet, stress and lack of exercise. We generally don’t consider how our homes might be affecting our wellbeing. Yet, it turns out that the homes we live in have an enormous impact on our health. Everything from our carpets to our computers contain toxic chemicals that could cause a raft of illnesses but, among the most harmful, are the toxins produced as a result of water damaged buildings. In Australia, one in three homes is potentially water damaged and if you are one of the nearly 25% of people who are genetically predisposed to biotoxin illness, this could set off a systemic inflammatory response known as CIRS that comes with a debilitating set of symptoms.
In this episode of Patient Journey’s we’re joined by Amie Skilton, a long-time Sydney resident who found herself having to navigate this frustrating and perplexing syndrome to ultimately find a path back to wellness. Throughout her story you’ll also hear commentary from a range of relevant experts to provide important insights along the way. Amie first went on to describe her life before getting sick.
Amie Skilton: So, prior to getting unwell, my health was pretty good. I mean, as a health professional of, you know, at that point probably 16, 17 years, I was eating well, mostly organic, I was exercising regularly, I would work out at a gym, you know several times a week. Late 2016, before I got sick, I did a 9km fun run. I’m not even a runner. So, you know my body was in fairly good shape.
I also had been working for, was it about 14 years at that point, for a nutraceutical company and had had a really busy year flying around the country and flying overseas delivering seminars, speaking at conferences. So, you know, life was really good, life was really exciting. I had a great social life, I had, you know, in that last year met my now husband.
Probably the one area that I couldn’t claim perfect health was my stress management. But, apart from that, you know, I enjoyed better health than probably most people and lived a very, I guess, normal, ordinary life without ever having to make decisions from a, “can my adrenals handle this? Do I have enough energy to do this?”.
I think perhaps the one thing that I’m now, more on reflection, aware of - and this was really like a lifetime stress rather than it being specific to that year - was that I was very much a night owl and I would get like, a second wind after dinner. I could easily work until 11pm and - but I was never a morning person. My colleagues knew I wasn’t really up for conversation before 10am and I sort of would start to hit my stride in the afternoon where most people are sort of in the morning. And I tried to change my circadian rhythm a lot by, you know, manipulating lights and setting alarms and trying all kinds of tricks and I just couldn’t. And, at the time, I just resigned myself too feeling like a night owl. But, it actually wasn’t until the year I got unwell, where I stopped working, that things actually shifted for the better and I realised it was actually my cortisol and my whole sort of 24 hours stress hormone profile that was triggered from childhood but, had ultimately had me operating in a way that people understand to be a night owl, but in actual fact, it’s just a really stressed person.
Danny Urbinder: Cortisol is a steroid hormone produced by the adrenal glands. It’s best known for its role in the fight or flight response and is critical for mobilising energy during stressful times. It's also responsible for helping maintain homeostasis, being released in a 24 hours cycle known as the circadian rhythm. In healthy individuals, cortisol levels are at their highest in the morning, as we begin to awaken, and are lowest in the evening with the onset of sleep. During stressful times cortisol rises higher and, if it doesn’t fall as it should in the evening, you become a ‘night owl’. If Amie recognised this pattern within herself, beginning at childhood, what other factors in that early stage may have contributed to her health challenges later in life?
Amie Skilton: So, I’ve always had a genetic vulnerability to the toxins that made me ill. And when I look back on my childhood life, my earlier years, it actually explains a lot of intermittent symptoms that no doctor could explain at the time. So, I was an army kid, which meant, you know, from a psychological perspective, it was quite a stressful way to grow up. I went to 13 different schools so constantly leaving friends behind was really hard, having to make new friends was really hard, especially once everyone hit puberty. Things get real interesting once oestrogen kicks in for girls, so that was tough. I moved 22 times in my first 21 years of life, but also some of the housing we were in, military housing, was poorly insulated. I remember one particular home in Waiouru, I was constantly getting muscle cramps, having bad nightmares and bleeding noses and I now understand those symptoms are indicative of the brain inflammation that was triggered and, of course, mould toxins I was being exposed to.
There was one home in Palmerston North that, you know, I would be, I was cold all the time and if I slept on my arm wrong it would be completely numb. I remember one morning waking myself up freaking out because I’d felt this cold hand on my back and it was because I’d slept with my hands wrapped around myself. I was on my side and I’d cut the circulation off. And, you know, all those kind of weird symptoms I had as a kid, on and off, on and off, on and off, now all make perfect sense.
That being said, you know, I had a very challenging upbringing. I had some dysfunctional family dynamics and that, combined with, you know, not having a sort of a permanent family or friends network meant that adrenally and nervous system wise, I was a bit of a traumatised kid. And so, operating under that kind of, I guess constant level of stress and pressure doesn’t set you up for navigating health challenges in the best possible way. So there’s no doubt that that didn’t help either.
Dr. Sandeep Gupta: Well, it’s got to do with a certain part of the brain called the limbic system and the limbic system contains the amygdala and other areas such as the hippocampus. And the amygdala has been described as being the smoke alarm of the brain. So in a sense, it senses for danger and it then sends a signal to the rest of the brain that danger is present.
Danny Urbinder: You’re listening to the voice of Dr. Sandeep Gupta. A general physician and integrative medicine practitioner with an informed perspective on how emotional trauma can impact someones susceptibility to chronic conditions, such as CIRS.
Dr. Sandeep Gupta: So, if you have a look at the research which has been done on post traumatic stress disorder, what happens is if someone’s had a very significant trauma in their life, whatever it may be, then what happens is the smoke alarm in their brain becomes very sensitive. And so, in a sense, they have a very low threshold for their brain to be triggered for them to think they’re in danger and therefore, they tend to suffer from a lot of anxiety. Now, what has that got to do with CIRS you might say? Well, it plays into the fact that the limbic system appears to also play a part in the physiology of this condition.
Once one has been exposed to biotoxins, that can also trigger the amygdala and other parts of the limbic system to think that there is a significant danger. Which, if you have a mould exposure big enough or another biotoxin exposure big enough, like a really severe tick bite, you can actually be in danger of getting very, very sick. And, so, the brain then recognises it, and you could say, to some degree, the brain only has a very, how should I say it, it only has a very gross way of responding to these kind of threats. So, if you’ve had a really severe exposure to mould at one point and then, following that, you have a mild exposure one day, the brain may still set off that smoke alarm to say hey guys, were in major danger here and that also can contribute to the inflammation.
Danny Urbinder: What Dr. Gupta is describing is a process known as the cell danger response. This encompasses the wide range of molecular changes that cells undergo in response to environmental threats, whether they be infection, physical injury or psychological trauma. When exposed to a threat, our mitochondria release ATP to the outside of the cell which acts as a warning signal for other nearby cells. As the body’s primary energy source, ATP is normally found inside the cell, therefore, if released, leaves a deficit in available energy. This results in numerous cell changes effecting functions such as metabolism, gene expression, digestion, detoxification and mood.
Robert Naviaux, a professor of medicine, paediatrics and pathology at the University of California, has recognised this biological mechanism as the framework for understanding chronic illness. He notes that the cell danger response cannot be turned off until the cell receives the final ‘all clear’ signal. Until then, the cell danger response remains stuck in a repeating loop that blocks further healing in an attempt to eradicate perceived danger. Only when a cell perceives safety can it heal completely. Psychological trauma particularly during childhood, seems to be an especially profound trigger for the cell danger response. In this case, the limbic system is activated, resulting in a fight or flight response which suppresses all functions that aren’t important for immediate survival. As the stress continues for a long time, an increased degree of fight or flight arises in which cortisol is released, the immune system is suppressed, inflammation rises and the risk for disease becomes more and more likely. In Amie’s case, such a scenario seems to have been at play and, while she may not have been aware of it at the time, it’s possible that this may have contributed to her susceptibility to CIRS further down the track.
Amie Skilton: I was being exposed to mould both at the workplace and at home. At home, I was living at an apartment in Waterloo and, whilst the actual apartment itself was fine, it was in a complex that had a bit of a swampy garden in the centre and they’d actually had to close the gym inside because it got totally mouldy. And so it was sort of constantly VOC fumes coming up and even, not knowing in the way that I know now, I knew it was a problem and I was trying to get the strata to sort it out and no one was really doing anything about it. But, in addition to that, the office that I was working in leaked constantly. In fact, it flooded a couple of times after really heavy rain and most people don’t really understand how to dry things appropriately and in the right amount of time.
Janette Williams: If something doesn’t dry out within 24-48 hours then that’s a window enough for mould.
Danny Urbinder: That’s Janette Williams, a building biologist who’s trained to assess the built environment. She looks for environmental hazards that could potentially be implicated with chronic health issues.
Janette Williams: There’s mould everywhere, but as soon as you’ve got moisture there, then you’ve got colonies and it starts growing. And, so underneath a carpet you’ve got, well, you’ve got the carpet, you’ve got the timber and you’ve got the underlay and if you have water that is just sitting in there, not drying out, it’s a perfect food source. And, the types of mould that I find under carpet, when it’s really wet like that, is chaetomium, stachybotrys and also aspergillus penicillium.
Danny Urbinder: While there are thousands of known species of mould, each with their own characteristics, they all require moisture for growth. And, being a fungus, mould derives energy, not through photosynthesis, but from the organic matter on which it lives. In a process known as heterotrophy, mould secretes hydrolytic enzymes to degrade complex biopolymers, such as starch, cellulose and lignin, into simpler substances which can then be absorbed by mould filaments called hyphae. In this way, mould plays a major role in causing the decomposition of organic material, enabling the recycling of organic nutrients throughout ecosystems.
As a way of claiming their territory, many moulds also synthesise secondary metabolites known as mycotoxins, which inhibit the growth of competing microorganisms. As naturopath Lisa McDonald goes onto explain, it is these mycotoxins, as well as other microbial byproducts, which can cause genetically susceptible individuals to become ill with CIRS.
Lisa McDonald: So, the mould, the mould produces mycotoxins and its usually in response to stress. So, you know, often people will see mould in their home and they think that it’s the mould spores that they’re reacting to. If you’re reacting to mould spores that tends to be part of the adaptive immune system so that’s where you have allergic type responses. The mycotoxins can get released by the mould themselves, including the fractal. So, if you kill mould in your home, if you spray it with bleach, it’s going to give off the mycotoxins. So, it’s actually the mycotoxins themselves that the innate immune system is responding to.
Dr. Sandeep Gupta: Yeah, so it was traditionally always understood as being related to the mycotoxins, which you could say are an excretion of the mould. It’s not the mould themselves but, they create small ionophoric molecules and they move from cell to cell and they don’t generally live in the blood but, they’re intracellular. And, what happens is, in people who are genetically susceptible, that rather than creating a proper immune response, they have a chronic inflammatory response instead. In a sense, that’s their immune system’s best attempt to rid itself of those biotoxins. But, instead of having an effective immune response, they end up having this chronic ineffective response which is characterised by the formation of what we call cytokines, which are certain immune proteins that are signalling molecules. So, when there’s a lot of cytokines around, the body’s generally in an inflammatory state. Some people refer to that as having a silent fire going on in the body and so that becomes the disease itself. The immune response becomes the disease.
Amie Skilton: It was the middle of June, June 2014. I remember that because I was due to fly up for my mums birthday and I wasn’t cleared to fly. I woke up with, I had a swollen liver. It was so swollen I actually couldn’t breath properly. I was sort of having to sleep upright and I had quite bad pain for a period of time, but it actually cleared over the long weekend and by the time I went to get an ultrasound they actually couldn’t find anything other than a swollen liver. But, in retrospect, I was being impacted by mould. And what actually happened around that time, was I got into the habit of drinking, you know, 1 to 2 cups of green tea a day and, what I now know is green tea stimulates Nrf2, which ordinarily in a healthy person is a good thing. It helps to boost your antioxidant, overall antioxidant status. But, Nrf2 pathway is actually blocked by mould toxins and so it has the opposite effect and creates oxidative stress and can cause liver damage, which is exactly what happened to me. I was in, you know, day and night, in an environment that was problematic, especially for someone with my genetic makeup. And then I went and added, you know, I threw fuel on the fire and it didn’t end well. So, ultimately they couldn’t find a reason for it. Allopathic medicine has, you know, a particular view of health that doesn’t encompass some of those wider environmental factors and I was basically labelled a bit of a mystery. And one night, I felt a bit of a pop out the back and I, what I think it actually was, was my bilirubin wasn’t raised but, mycotoxins cause cholestasis; and I think there was some kind of blockage or sluggishness in my gall bladder and then, by some miracle, it cleared itself and then I could breath again and my liver swelling went down and they never found anything and it resolved itself.
Dr. Sandeep Gupta: In some people, it may be that their primary problem, in terms of developing CIRS, is the lack of ability to detoxify biotoxins effectively by conjugating them into the bile.
Lisa McDonald: Detoxification is definitely super important as part of CIRS, it’s probably more to do with bile production. So, when the body is trying to get rid of toxins it comes out through the liver through the bile. So, it’s important that they have good bile production and that their liver function is working really well, so that’s really important. And, so if the mycotoxins aren’t being bound, by either a binder that they might take or they have CIRS so they’re not very good and binding it and getting rid of it, it then gets recirculated. So, that’s where there would be the sort of liver-bile relationship and, I know naturopathically, when you look at, you know detoxification, we always think of the liver but, we also need to think about biochemistry and what are the biochemical pathways that support detoxification.
Danny Urbinder: Mycotoxins consist of incredibly small, negatively charged molecules called ionophores which can readily cross cell membranes. While the liver is capable of capturing them for excretion into bile for elimination, in susceptible individuals, they can also be readily reabsorbed through the enterohepatic circulation. In this way, the CIRS sufferer indefinitely sets off a cascade of inflammation driven symptoms.
If mould exposure remains over time, mycotoxins continue to accumulate in the liver, overwhelming its capacity for detoxification and causing a reduction in bile flow.
This scenario is further exacerbated by the cell danger response, which also suppresses digestion and bile flow. Ultimately, this sluggishness in bile flow can lead to cholestasis, where bile cannot flow from the liver to the duodenum, increasing the toxic burden and causing liver inflammation.
If this is what was happening in Amie’s case, it would certainly explain her signs and symptoms. The fact that this episode seemed to self resolve however, may have given her a false sense of security, as Amie continued on with her life as normal.
Amie Skilton: So, I was obviously never a morning person then. I could have really good energy some days and some weeks and then I’d crash a bit and then I'd have to sort of come back out of it. It was really inconsistent, sort of like a rollercoaster, which was frustrating. I also often woke up feeling sort of a bit foggy in the head and not necessarily headache-y that often, but sometimes, and it would take a while to clear. So, you know, I’d kind of stumble into work a bit bleary eyed, nursing a coffee and I really struggled with focus in the sense that I couldn’t have people talk to me. I had to make an agreement with some of the colleagues that sat near me not to talk to me until after lunch, I would often wear noise cancelling headphones and, in fact, almost religiously, so that I could actually focus and get work done. But, I’d start to feel better by the afternoon and then in the evening, I actually got most of my work done after 5pm when the office was empty, because I could finally hear myself think and I could focus; and I know this is a terrible habit to get into, but I would have dinner at the office and I’d work until about 8 o clock and then I would go home because I really couldn’t function that well during the day.
So at that point, I was feeling incredibly burnt out and at the end sort of November 2016, I stepped away from my job to take a bit of a break and kind of rest and recover and reset. I think on some level I knew that I needed that.
Danny Urbinder: Amie decided to take a 12 month career break. Her plan was to get some much needed rest and recuperation and then start work on a business idea she was keen to develop. Also at that time, she changed where she was living and moved to a recently renovated apartment with her partner in Manly, on Sydneys Northern beaches.
Amie Skilton: We, we moved in and we were sort of heading into Christmas. It was summer in Sydney, we're like within walking distance of the ferry bower and, you know, I was tired from the year. So, I sort of made a decision that I was going to have about 6 weeks off. I’ll take December and January off and rest and recover and get some energy back. But, in that time I did sort of map out what I was gonna do with the rest of my time and I pegged the beginning of Feb as my, right, ‘now’s when I’m gonna get to work’. So I enjoyed a great summer and I felt, I felt okay at that point. I didn’t know anything was wrong but I actually also wasn’t doing anything to challenge myself. I wasn’t working, I didn’t have to get up at a particular time, I wasn’t studying. But, February, beginning of Feb, I sat down to work, I had my game plan mapped out and I was just really fatigued. Mentally, I was starting to struggle with focus. It was significant enough for me to go, ‘okay. I’m not ready to do this, I’m not, this isn’t productive, this isn’t working’. So, I thought okay, you know what, I’ve still got another 14 months up my sleeve. I can give myself another 4 weeks to restore and rest. Obviously, I was more burnt out than I thought I was.
It’s common to make excuses for symptoms and I certainly did. I mean, it’s a reasonable explanation and so I thought, okay, well, I’ll start work in March, but I need to get some structure back into my day and start creating a routine to set myself up for success. So, you know, I set up a bit of a routine for myself and starting engaging in some physical exercise that was, I mean, I guess it’s all relative but, I mean it was, it was somewhat intense. Like circuit training, high intensity interval training, resistance exercise you know, 20 to 40 minutes a day, nothing extreme, but also it wasn’t, you know, just a casual walk around the park, either. And, what I found was, every time I did a workout I was exhausted and I’d have to go back to bed for 4 hours. And, I’d never heard of post exertion malaise and I was just like, wow, I’m so unfit, this is embarrassing. So, I sort of had to wind it back to yoga, power walking, a little bit of resistance exercise but, free weights at home. But, even then, like that was really, I wouldn’t be able to work afterwards and so I would then adjust my routine to work first and exercise in the afternoon because I knew once I’d exercised, I wouldn’t be good for doing anything else.
Lisa McDonald: Look, I think the chronic fatigue can be from a couple of things. One, I think it’s because the mitochondria get affected, so you know, your ATP gets really affected by the whole insult I guess on the system. Also, it creates like, the complement system kicks in. So, complement, that increases in response with the inflammation, and so that impacts capillary hypoperfusion. So, then you’ve got lower oxygen, so you don’t have as much oxygen going around. But, yeah, there’s definitely an impact on the mitochondria and I think that even oxygenation of cells because, you do get that post exertion malaise, you do get that breathlessness and those sorts of things. So, a lot of the inflammatory cascades that happen cause a lot of that fatigue. And, of course, you know, the hormones get effected too. So, it’s cortisol and your ATCH also gets effected and they, you know, initially go up and then they go down. So, you know, bottomed out hormones, bottommed out mitochondria, not great at getting oxygen around the body, I mean you know, we're looking at fatigue.
Dr. Sandeep Gupta: So, the original description was that it related to 2 markers called C4A and VEGF. And, that, what happened, is that people developed what’s called capillary hypoperfusion, which means that they’re just not getting enough oxygen to the tissues. And, therefore, you’re getting too much anaerobic metabolism and not enough aerobic metabolism, where you’re getting that really healthy formation of ATP through the use of oxygen and glucose. Instead of that, you’re getting lactic acid formation which makes your muscles very, very sore and stiff and often that’s what happens, particularly in CIRS patients who exercise a lot. Rather than getting that lovely feeling of euphoria or feeling better from exercise, they actually feel worse. They get a lot of muscle pains and stiffness and often that’s because there’s a lot of lactic acid being formed.
Amie Skilton: At that point things, I was still kind of functional. I could still hold a conversation, my memory was still okay. Things really started to pick up the pace on the 19th of February and I know that because that was a particular day that I had a girlfriend come, or she was staying with us, anyway. And, we did a big personal styling session. As I mentioned before, you know, my job was presenting, so you’ve gotta look sharp on stage and I felt like I could use her professional eye on, you know, what my wardrobe was missing, other outfits, things like that. But, what happened was, my clothes had been sitting in the wardrobe for about 3 months at that point. Because it had been summer, I’d just been living in swimsuits, shorts and singlets and so none of my handbags, high heels, pants, blazers, shirts had been touched and what I didn’t know, was that mould and mould spores had started accumulating and growing on those clothes. So, that day when we pulled everything out and I tried everything on and numerous combinations, I was disturbing all of this material that I had a problem with, physiologically. And, in every single photo she took of me, because she was taking records of the outfits so that I could remember, I was sneezing and sneezing and sneezing, which was really odd. The other thing is, I also, my clothes were very tight and that was embarrassing and I was like wow. I’ve really let myself go. This is, this is bad, this is really bad, but because I’d disturbed all that matter, that’s when my immune system really roared into life and things started to go really badly.
Danny Urbinder: According to Dr Ritchie Shoemaker, the researcher who initially described CIRS, an estimated 80% of CIRS cases are caused by repeated exposure to water damaged buildings. For Amie, this latest exposure seems to have been the final straw for her immune system, triggering both an acute and chronic systemic inflammatory response that would soon usher in numerous debilitating symptoms. However, when it comes to her underlying susceptibility, there are still other factors to consider that may have been at play.
Dr. Sandeep Gupta: So, originally the research team had the hypothesis that it’s related to the HLA genes. And the HLA genes, so HLA stands for human leukocyte antigen and this is an area on chromosome 8. And so, many clinicians probably know about other HLA genes which are looked at in coeliac disease, that you look for in various atypical forms of arthritis, such as ankylosing spondylitis. And, so these are genes that code for the ability, or inability, to create an immune response to certain antigens. And so the HLA genes looked at in this case, are the HLA-DQ and DR genes. And, so they appear to be specifically related to biotoxins, as well as, actually coeliac disease and various other autoimmune conditions as well, so it’s not just CIRS.
Lisa McDonald: Some people are more susceptible to CIRS. So, one of the things that’s been looked at, or has been suggested as one of the susceptibilities is the HLA-DQ / DR genes. That’s really come from a lot of the work Dr. Shoemaker did from his clinical experience, clinical data that he acquired over quite a long period of time. And it was found that there’s certain haplotypes, or combinations of haplotypes of genes that suggest some people are susceptible. There’s an estimate that about 25% of the population can potentially have that susceptibility. It’s not a, what would you call, a diagnosis, it’s really a potential susceptibility and what we’ve found over treating these patients over a long period of time now and seeing lots of patients, is that most people will have those genes. Probably, a handful of people don’t. So, there’s an estimate of probably 95% of people with those genes will have, can potentially get CIRS. I have had, I know in my own practice, a couple of people who don’t necessarily have that gene susceptibility but, definitely have the whole CIRS picture.
I think it’s like with any genetic predisposition, it’s not always going to be switched on. So, I think, what I’ve observed in practice, is that it tends to be switched on when there might be some other preexisting things or there might have been a massive trauma. So, where I’ve seen, where they’ve had trauma in their childhood, or there has been, been through some sort of trauma, they might have picked up a stealth infection, they might have Epstien-Barr, there might be a couple other things going on in there and they land in a mouldy house and boom. That’s, that’s when it, and you know, they might be 40 by this stage and they might have lived in a series of mouldy houses at some point in their life.
Danny Urbinder: Amie did have the HLA-DR / DQ gene test done which confirmed she had indeed inherited the haplotype, or combination of gene variations, that is statistically correlated to an increased susceptibility to mycotoxins. These results further suggest that Amie’s immune system was unable to properly identify and eliminate toxins from mould.
Amie Skilton: So, over February, March, April, I had to take antihistamines constantly. Which should, which is obviously one of the biggest red flags for mould in a home, I now know, but didn’t at the time.
I then, my skin started drying out. So my, my skin tends towards oily and it was so dry, it was cracking, it was uncomfortable, it felt like I was going to burst out of my skin and I was having to put body lotion on like 3 times a day just to feel comfortable in my skin. It was just, it was actually quite scary.
At that point I was like, ‘something’s actually wrong’. I was having trouble breathing at night, my mood started to shift, my brain started to deteriorate. For example, I like to read in the evening in bed before I go to sleep and I couldn’t focus on the page. I was, sort of, I’d read a sentence or two and then forget what I’d read and I’d have to sort of go back and I would find I was having to reread the page again and I’m like, ‘oh this isn’t right’.
And then I started having cognitive issues where I kept loosing things. So it started with I couldn’t find my keys to leave the house and then, when I finally found them, I’d have lost my phone, and then I’d have lost my eftpos cards. There where many days where I didn’t leave the house, I just couldn’t, I just couldn’t get myself together, like full dementia. Then that escalated to - I was driving a scooter at the time, I had a lovely red vespa, it was my pride and joy, and I would go somewhere and then I’d walk away and leave the keys in the ignition. Then it got to the point where I couldn’t remember where I’d parked it sometimes and at one stage, when I was really unwell, I actually forgot where I even was and where I was driving. It got to the point where I couldn’t actually leave the house because I didn’t know how to get dressed anymore. I didn’t know, I was confused looking at clothes, I didn’t know how to put them on, I didn’t know what was meant to go first or second. Sometimes, I’d, I’d forget to eat, I’d forget to shower. At one point, I was filling out a form and someone asked me for my name and I didn’t know. That was terrifying.
Dr. Sandeep Gupta: So, I think one of the first things is just the multi-system nature of the symptoms. So, you know, if someone has CIRS they don’t just say that they’ve got some abdominal pain and a bit of bloating and some headaches, because that’s only, that’s only 2 body systems. But, they’ll often say, ‘oh, I’ve got some abdominal pain and some bloating and some headaches and some anxiety and I’m not sleeping and I seem to be getting skin rashes and my muscles hurt and my joints hurt'. So, you get the idea, it’s very wide spread.
Lisa McDonald: It takes a good, thorough case taking and then you kind of need to look at, to what extent are the symptoms they’re presenting with actually meeting the symptom clusters. So, Dr. Shoemaker’s work has put through a consensus statement that was done quite a few years ago of what the actual agreed symptoms are and, they’re in like, a group of clusters. And, you need to look at that list of symptoms and make sure that the person has got a symptom at least 6-8 of those clusters. So, there’s like a symptom cluster analysis, so a good case study, see if they meet the criteria. The other thing, too is have they been exposed?
Danny Urbinder: According to Dr. Shoemaker, if a patient is confirmed to have 8 or more clusters of symptoms, the likelihood of presence of CIRS exceeds 95%. In Amie’s case, she was experiencing an excess of 10 symptoms clusters, and as far as exposure was concerned, she was soon to discover just how significant this was.
Amie Skilton: So, just prior to moving in, sorry just after moving in, we had a call from the strata of the apartment block and they said, ‘oh, there’s a leak into someones garage below’. We were above the garage, as well as a couple other apartments, and they said, ‘we think it’s coming from your place, do you mind if we send a plumber in to check?’, and I said, ‘yeah, sure’. So he came in, checked, and said immediately, almost immediately, ‘yeah, it’s definitely coming from here’. And I thought, oh that’s no good. But given it was Christmas, I thought oh, they would send someone in to fix it maybe in the new year and I absolutely wasn’t aware that it was leaking into our apartment either. I thought it was below the subfloor and it was not something that was going to impact us. And, I think the reason it took so long to discover was because we were in a north east facing apartment, lots of sun, lots of natural light. Because I was working from home, or I was at home the whole time, the windows were always open so no mouldy smell ever accumulated. There was actually no visible mould, either. We had carpet and there was all this mould growing underneath that never came through and so we didn’t have any sort of photographic evidence at the time to say we have a mould problem, and we have a leak. And then, it was around April that a friend of mine actually had a leak at her house, her husband actually has my same genetic makeup. She posted about it on social media and the remediation process and I went ‘oh my god’. We have a leak and this is what I think it is. So, at that point it was actually a relief. I was like, now this all makes sense.
And, I reached out to the real estate, but what I didn’t know was that the owners where actually aware of the leak and where arguing with the strata about who’s going to pay for it. And, this is probably the most upsetting part, was they knowingly left us in an apartment for 5 months that was leaking. When that penny dropped for me, I got straight onto the real estate. But, I also contacted a colleague of mine who I knew specialised in this to get tested for it and get a diagnosis and treatment and I also had to engage a building biologist to actually come and prove there was a leak in the apartment. And, actually, we had a significant mould issue and, of course, she’s trained to find those things and when she lifted the carpet, what was underneath the carpet told a very different story than the cover of the top side did.
Janette Williams: As soon as I see carpet, either at a bathroom entrance, a laundry entrance, in a wardrobe that is against a shower or has, on a balcony, or has an external door, even windows. I just pull that carpet back and you know, more than 50% of the time that carpet is contaminated. So, carpet is a really big thing that hides mould and, yeah, your nasty moulds are in there: Stachybotrys, your chaetomium are in the timber and in the carpet and lots of aspergillus penicillium.
So, they’re all really, you know, moulds that really will affect people. So, and the other area that, where its hidden is in ceiling cavities. People sort of say, ‘oh, yeah, I’ve had a little bit of a leak’ and yada, yada and you sort of take a bit of a look and an air sample in the ceiling cavity and it’s sky high. Another one is in wall cavities. So, if you’ve got waterproofing that’s failed, then in that wall cavity, even though you’ll do a moisture read and the wall is totally dry.
Amie Skilton: So, she moisture mapped the place all the way to the bathroom and, with the ever increasing moisture levels, was able to pinpoint where the leak came from and confirmed that we had water intrusion, ongoing water intrusion, and it obviously had been going for 5 months; and that the issue wasn’t because of a bit of rain or humidity, it was actually a full water leak. But, also she was able to assess the relative mouldiness of the house as well as, I guess, a derivative of that score as far as toxin producing moulds go. So, it was Q4, so there’s 4 quadrants when you’re assessing relative mouldiness and quadrant 4, which is the most mouldy, is over 5 - the score was 20.
Danny Urbinder: The relative mouldiness assessment Amie is referring to, is known as ERMI or Environmental Relative Mould Index. Amie also had an additional assessment done known as HERTSMI-2 which reports the mould burden of 5 particularly bad moulds that are most likely to cause health problems. The result from this test came back with a HERTSMI score of 30, which is extremely high. Most CIRS patients will get sick with a HERTSMI score higher than 15.
Janette Williams: The ERMI is Environmental Relative Mould Index and so that was formulated by the EPA to gauge the relative mouldiness in homes. And, it looks at 36 different moulds; you have 26 moulds in group 1 which are the moulds that are common in a water damaged building and then you have 10 just common indoor moulds and they take the group 2, which are the just regular indoor moulds away from group 1, and you get a score and, basically, if that ERMI result, if that score is above 5, you are in the top 25% of mouldy buildings.
HERTSMI-2 is a score which is based on 5 of those moulds and that is a better indication, if someone who has been diagnosed with chronic inflammation response syndrome, if they are going to react in that building.
So, the problem is for us in Australia, its not done in Australia anymore so it has to go to America and it takes, like at least probably around 2 weeks, sometimes more, sometimes less. And, the other thing, is that its telling you if there’s a problem in the house but, it doesn’t tell you where the problem is and, it can’t be used for a remediator. If you say I’ve got a high ERMI, they say, ‘oh well, where’s the problem’.
But, if I’m trying to make a plan for someone to get a house remediated, I would do air sampling. Now, air sampling doesn’t, is not as sensitive as ERMI but, then that’s where you’ve, sort of, got to put everything together with your observations, everything that you’ve noted on the day and even how people are living on that property. Building materials, building design, all of that, the local microclimate and you put all that information together so, ideally I would do an ERMI, HERTSMI-2, air and surface samples and a whole assessment.
Amie Skilton: At that point the real estate agent took things a little bit more seriously although, I have to say, it was like pushing the proverbial uphill with a stick to get anything done. I had to go into their offices and negotiated moving out, not paying rent and actually having them replace the carpet. They where going to do what most real estate agents do which is a cheap and insufficient fix and that is, send in a mould tradesmen, if I can call them that, to spray some chemicals around and that is just, knowing what I know now, laughable and negligent and I knew enough at that point that that wasn’t going to be okay. And, I managed to get them to rip the carpets up and we moved out until the leak was fixed and the new carpets where in and not pay rent but, of course, everything that was in there was impacted by mould as well. Our whole mattress was a cesspit of mould.
Janette Williams: The mattress is porous and you’re sleeping on it and you’re creating lots of moisture, you know, in a bedroom, if you don’t open your windows up and you’ve got, you know, so you get humidity and condensation on your windows. But, you’ve got, you know, if you sweat and just, you know, moisture from your body goes into that mattress and, if it’s if it’s not getting air flow from underneath, or if your on top of a soil sub floor and timber floorboards, and you’ve got all of that sort of cool, damp sort of air coming from underneath the house, and you’ll find that your mattress can have a lot of mould in beds.
Amie Skilton: I couldn’t breath at night, my lungs, I could feel every alveoli in my chest on fire and we moved the bed to the lounge, we couldn’t breath in the bedroom anymore but, what we didn’t know was that the mattress had become just riddled with mould and, so every time we laid down on it, you know, we where breathing that into our airways. My blood pressure was high, I was dizzy, I felt drunk and hungover the whole time. And, my blood pressure is usually, has always been on the low side. A high blood pressure for me was 110 over 70, sometimes it was 95 over 60, it always sort of hovered around that point and so, mine, I think went up to 140 over 85, which isn’t good anyway but, given that my baseline normal was on the low side.
I actually went to a GP, as well. So, after, because we were planning on legal action at this point and so, we wanted everything to be documented by a GP and that was actually the worst experience I’ve ever had with a practitioner in my life but, she didn’t think that blood pressure was an issue, but anyway, I went to her to get official documentation of these things.
I couldn’t breath properly so, she sent me for an asthma test, which was also a waste of time and ran all the usual bloods which, understandably, they do as a first level investigation and, the smoke on her face when she gave me my results and told me there was nothing wrong with me will, unfortunately, rattle around in my mind for a long time. It was horrific and I know that a lot of people have that experience. I know a lot of my clients have that experience but, it was actually really disturbing to be on the receiving end of it, especially when I was that sick and it was something that I didn’t yet know how to manage, how to treat.
I actually, I wrote a list of all my symptoms. I probably still have it because I wanted all of these things to be documented properly, and I was sort of going through the list, and what date certain symptoms started and she cut me off when I was like, I’d barely gotten started and she barked at me and said, ‘what else have you got in there, what else, really? Really? Is that all? What else?’ Like, it was so rude and so condescending and so nasty and so cold and unprofessional and disturbing.
So, needless to say, I just took my results and left and never, never sought help from her ever again. But, I have to say, that’s probably a very common experience for people who are in my shoes that I was in back then. If your results from the normal tests are normal, where do they go from there? Hopefully, somewhere better with a better attitude. You're very vulnerable when you're sick. Obviously the sicker that you are the more distressing it is and what I had was something that it’s not commonly picked up. It’s not recognised in Australia by allopathic medicine so, I guess it could be considered a bit of a fringe diagnosis. I think probably the hardest part of that experience though was I’m still, I grew up with the conditioning, like most people had, that the doctor was supposed to care for you and that the doctor knows a lot, not necessarily everything but, knows a lot and should know to keep looking and define something. And, to be sort of, at my most sick and most vulnerable, in an office of someone that I’m supposed to trust and to be mistreated like that and like, borderline abused, its medical negligence and abuse. The way she spoke to me, her attitude, she sort of didn’t bother to suggest other further investigations. I mean, she’d ran quite a few, I get that maybe she was out of options but, the way I was treated, I think that was the most disturbing. And, I think what was the saddest part about that, apart from sad for me because it was horrific, but really thinking about other people who have to go through that, like I’ve had clients go through it, I hear it all the time and obviously my colleagues would hear it all the time; people being dismissed, denied, minimalised, gaslit by their doctors. But, I think I, sort of, chose to believe it didn’t happen all the time. I never thought it would happen to me and it did and I just really felt for everyone who’s ever gone before me with this illness any other chronic illness and who’s been neglected and mistreated like that, its disturbing.
Dr. Sandeep Gupta: Validation is like emotional oxygen. You could say it’s something that we as human beings, it’s one of our basic needs, to be to be seen and validated. And, so one of the elements of CIRS and other newly discovered conditions is not being validated and it really compounds the suffering of the condition because, on top of actually having the symptoms, often those around the sufferer or the patient don’t believe them. And, so that, yeah, as you say, that can be medical practitioners, that can also be relatives and partners, quite often. And, that can lead the person to question themselves, and it can lead them to loose confidence in themselves, and question whether they may be suffering from a psychiatric condition. And, I think that greatly compounds the whole situation.
And, part of the problem is to do with medical education in that we haven’t been generally taught to look at multi system illness. It’s not a common part, I mean there’s some rare things like autoimmune illnesses and connective tissue disorders but, generally, you know, you would tend to see a high ESR and CRP but, in this case, this doctor, they probably quite quickly thought,‘okay your not in that camp of autoimmune connective tissue autoimmune disorder, which then just takes you towards depression and anxiety.
Lisa McDonald: Amie’s situation is not an uncommon experience and I don’t think it’s necessarily because the GPs are good or bad GPs. To be fair, it’s not really a recognised illness in Australia at the moment. And, so therefore, there’s not really an awareness of what the symptoms are and, you know, we’re hoping that that might change in years to come.
Also the usual inflammatory markers that one would run as a GP like C reactive protein, ANA or any of those ones, they tend to, unless the person has started to develop an autoimmune issue as well, but they tend to be normal. And, then if the person says there’s mould around I think my house is making me sick, they’ll run an allergy test on mould, all comes up normal. Because, if you remember, when we talked about the immune system, that gets set off. The allergy part of your immune system, which is the adaptive immune system, doesn’t kick in so, often the person has been tested for mould allergy and its perfectly fine, they’re not allergic to mould.
So, then I guess to be fair, from a process of elimination, like what happened with chronic fatigue syndrome, if there’s a bunch of symptoms you can’t figure out what it is, all the tests are normal, you’re gonna think it’s a bit crazy, right. I think that, as part of being a practitioner for patients who have experienced this, it’s really important to listen to the patient. And, this is the whole case taking and review and stuff like that, and empathising and validating and having some tests that come back and say, ‘look, yeah, I can see some disregulation there, this is what’s going on. Your house is making you, or your car or your workplace, is making you unwell.
And, in addition to that, because they’ve got cognitive issues, they’re already second guessing themselves so they’re already suffering from, ‘I’m forgetting stuff, I’m trying to talk to somebody and I forget the words, I was going to say, I was doing a PhD and now I can’t do this stuff’. You know, that’s really, you know, overwhelming. And, then, for people to say to you its all in your head, its not a pleasant experience, so it's really important the validation.
Amie Skilton: So, I was sort of seeing two people at the same time. I had already seen a naturopath, a colleague who I knew was across this. Seeing the GP was, honestly, a formality. I didn’t even go there with any kind of expectation or hope and I was still horribly disappointed. But, I was seeing a colleague who’s CIRS-literate, who’s actually experienced it herself. And, oh my god, it was just, the experience was night and day. To be in the care of a practitioner who first and, first of all cares. Who, second of all, knows what they’re doing and understands what your going through, not just on a clinical level, although that would have been good enough, but on a personal level. Having been through it herself, so she arranged all of the pathology tests, and this is, I guess, where the contrast between allopathic medicine and holistic medicine comes in. The GP tested ESR and CRP for me, which are two inflammatory markers of many but, because neither of those were raised, she said there’s no inflammation, which is completely untrue and myopic. And, yet, when we tested the right markers, which in my case was complement C4A and transforming growth factor beta-1, they where off the charts.
Danny Urbinder: When assessing the immune response of CIRS sufferers C4A is considered an inflammatory marker of particular significance. This activation protein is part of the innate immune system known as the complement system and, as such, plays an important role in clearing pathogens through the regulation of inflammation. However, when upregulated, as we see in CIRS, elevated C4A can cause a range of disease related effects, including tissue damage, histamine release, increased vascular permeability and capillary hypoperfusion, resulting in low tissue oxygenation. In the CIRS sufferer this can result in symptoms, such as post exertion fatigue, cognitive impairment and respiratory problems. The normal range for C4A is considered to lie between 0 and 2800 ng/ml. In Amie’s case, her test results showed a C4A level of over 15 and a half thousand ng/ml.
The other key inflammatory marker in relation to CIRS is TGF beta 1. This signalling protein, or cytokine, is involved in the maintenance of tissue homeostasis and the regulation of the innate immune system. However, when chronically over expressed, it can drive disease progression by impairing the function of T regulatory cells, leading to fibrosis, affecting organs including the liver, kidney and lungs. The normal range for TGF beta 1 is less than 2380 picograms per millilitre. In Amie’s case, her levels where twice the upper limit at 4040. This may not only explain Amie’s breathing difficulties but, may also have caused nerve damage leading to neuropathy, which she described as, ‘feeling every nerve in my body on fire’.
Dr. Sandeep Gupta: You can sometimes see some subtle signs say, for instance, if you get the patient put their hands up like this, you may see there’s a subtle tremor. And, particularly if you put their hands straight and put a paper on it, the paper may be seen to quiver. That’s also another sign that the nerve cells are inflamed and its thought to be related to one of the cytokines which is called TGF beta 1. So, that’s one of the really important cytokines in this condition.
And, then there’s something called the visual contrast sensitivity test or VCS test and that’s something that can be done in your rooms, if you have an in-person kit or you can get them to do it online. Really, what that’s looking for is a failure to detect subtle shades of grey and it relates again to neuroinflammation. So, thats a simple one, if they have a failed VCS test that’s considered to be highly suggestive.
Danny Urbinder: Amie did the visual contrast sensitivity test and failed, indicating nerve damage and therefore, a high likelihood of having CIRS. In addition to this, she was tested for a range of CIRS biomarkers, including alpha melanocyte stimulating hormone or alpha MSH. This peptide hormone is best known for stimulating skin pigmentation however, alpha MSH has also been known to play a pivotal role in regulating inflammation, immune modulation and energy homeostasis. According to Dr Ritchie Shoemaker, alpha MSH is often low in people with CIRS.
Lisa McDonald: MSH in itself is kind of at the centre of that because, spinning off from that, it has an impact on hormones, it has an impact on mucous membranes, in the nasal passage, it has an impact on sleep cycle, insomnia, it has an impact on intestinal permeability. Its kind of like the lynch-pin, for want of better term, of what really happens with people, its that low MSH. So, it actually does play quite a significant role but, that hormone in itself, its job is really supposed to be to balance the immune and inflammatory systems but, it gets disregulated so, it does all the wrong things and it goes low. So, low MSH is really what drives a lot of those symptoms.
Dr. Sandeep Gupta: In the original model this is considered to be the centre of the whole problem - the low melanocyte stimulating hormone. Because, really, that relates to a whole array of different effects. One tends to get low melatonin, as a result one tends to be more likely to get a certain bug called MARCoNS in the nasal passages. And, one tends to get intestinal hyper-permeability, as I mentioned, and an array of other things; low ATCH, leading to low cortisol, which can cause fatigue. So, there’s a whole bunch of secondary effects that can happen due to the low MSH. And, so that’s really the hallmark of CIRS and correcting that is quite tricky. Actually, some of the, even when many of the other markers have come back to normal, it seems to take longer for the MSH to come back. But, the VIP nasal spray, which is one of the specific treatments of CIRS, can sometimes assist with bringing that up.
Danny Urbinder: The VIP nasal spray Dr. Gupta is referring to is Vasoactive Intestinal Polypeptide. This neuroregulatory hormone is produced throughout the body, including the gut, lungs and central nervous system. Among its many functions, it's involved in limiting inflammation, the release of stress hormones, the relaxation of smooth muscle and therefore, the regulation of blood vessel constriction. In the CIRS sufferer, given its systemic impact, it's not surprising that when VIP goes low, as it did in Amie’s case, people feel bad on many levels.
Another important consequence of low VIP is reduced levels of vascular endothelial growth factor or VEGF. This critical signalling protein, responsible for stimulating new blood vessels and vasodilation, was also low for Amie. Low levels of VEGF can result in capillary hypoperfusion, brain fog and fatigue. In this scenario, the body struggles to make new blood vessels to offset the restricted blood flow caused by low VIP. This results in reduced levels of oxygen required for the production of ATP energy molecules. Put simply, if you don’t have enough oxygen, you can’t make enough energy.
Amie Skilton: Because, it got to the point where I was so bad with the fatigue that there were days when I had to choose between eating and showering. Like, I had so little energy that, if I made myself breakfast, I’d have to go straight back to bed and sleep the rest of the day. So, I lived, I lived much of 2017 in my pyjamas and probably only showered a couple times a week. Like, if James was home, my partner, to make food, then I could shower and I could do a few other things but, if he wasn’t like, I just, I just couldn’t do anything for myself. I was also, because I was still being exposed to mould, there’s lots of secondary illnesses that can develop as a result of exposure to mould and the immune response. One of them is electro-hypersensitivity, which I did get, mildly. But, more commonly, mast cell activation syndrome, or disorder, can be triggered because, of course, you’re being exposed to these airborne irritants constantly and the body keeps producing more and more histamine so, part of my protocol, was taking nutrients to stabilise my mast cells. So, quercetin, other bioflavonoids, proteolytic enzymes and that was more, that was more to help limit the antihistamines that I needed to take. I was able to come off them but, more importantly, its purpose wasn’t so much to get me off the antihistamines, it was to stop me developing a histamine disorder as a secondary result of what happened. And, so whether that’s something that looks like hay fever that’s all year round, or allergic rhinitis in those who are susceptible, asthma - I actually had my first asthma attack at 37 as a result of mould exposure. I never had asthma before in my life but, for asthmatics, its more and more asthma attacks, more and more sever asthma attacks, hives. And, it also starts to show up as food intolerances, initially with histamine containing foods, so people can have a reaction to things like Kombucha, sauerkraut histamine releasing foods but it can escalate to being allergic to almost everything so just a very aggressive and inflamed immune response.
Dr. Sandeep Gupta: Really, mast cell activation is focusing in on one particular cell, while CIRS is just focusing in on inflammation in general. Probably, the mast cells are a component of the chronic inflammatory response in almost all CIRS patients but, in some patients, that’s actually very prominent. And, mast cells are really one of the first lines of defence of the immune system and they’re generally found predominantly in mucous membranes particularly of the GI tract, like in the mouth and nose and so, a really common symptom I’ve seen a lot of is lip burning or mouth burning, in women, vaginal burning is a really common one as well. So, you can see that it tends to follow the mucous membranes.
Intestinal problems like abdominal pain are also quite common. And, so what happens is that mast cells are there to detect a very severe foreign invader in the body and they basically then release histamine and other mediators like tryptase and serotonin and prostaglandins and so on. They release a whole heap of mediators which, then alert other organs and cells to be on alert for the foreign invader. And, basically, that’s a very healthy immune, that’s a very healthy component of an immune response. Like, if someone has something, you know, gets something that’s very dangerous into the body, you actually want that very severe allergic response because, that often will rid the body of that invader.
However, the problem is, often with mast cell activation, is that those cells become chronically activated and that’s just related to overwhelm of that part of the immune system due to a high toxic load. So, you then develop multi-system symptoms, again due to those mediators, in this case such as histamine and prostaglandin and so on. I guess, what’s specific about that, is that people tend to be very sensitive to treatment as well and also they tend to react to food a lot, so a slightly different approach needs to be taken to those clients in that their mast cells need to be calmed down before other aspects of the treatment are undertaken.
Lisa McDonald: It is part of the cell danger response. I wouldn’t say it is a, developing mast cell activation is a diagnostic feature. I’ve been through a few iterations, from clinical observation, of whether I feel like people start with CIRS and then is, sort of, develops into mast cell activation. Or, maybe they had a little bit of it to start with and it comes out in CIRS. I guess, the bottom line is being in a mouldy environment is a trigger.
So luteolin, quercetin and curcumin are probably the three key things that is helpful and, in some cases, resveratrol and then, of course, herbs. But, the problem is, with mast cell activation patients, is they’re usually intolerant to herbs.
Amie Skilton: Whats tricky though, is that you can’t, sort of, keep poisoning yourself and then expect supplements to fully attenuate that. And, what I mean by that is the first and biggest priority for someone with CIRS is to find a home that isn’t water damaged and that’s actually very, very hard. But, between that point and when I was, I got sick, the protocol kept my head above water. It kept me functional, where I could talk, remember my own name, get dressed, have enough energy to eat and have a shower and do probably a couple other little things and therefore, be in a position to try and find a safe home. I guess, one of the key things that happens, is the extreme amounts of inflammation in the body which causes damage in tissues and organs. I will just say, there are also some really amazing pharmaceuticals that can be employed to do this but, I never ended up needing those to get well. I would have happily taken them if I’d needed to but, what we did use was really high dose fish oil, amongst some other natural anti-inflammatories. So, high dose fish oil was key, that also obviously helped with the inflammation in my brain. The inflammation, one of the big pieces of collateral damage is mitochondrial damage, which is why chronic fatigue occurs and why I had so little energy. And so, I was put on a formulation that supports mitochondrial function - oh, that was good stuff. That was, like, better than any coffee or other stimulant on planet earth - it was just amazing! I felt human again, I felt like I could do all the things again.
Danny Urbinder: The mitochondrial support supplement Amie took contained a range of nutrients formulated to promote cell energy production and mitochondrial membrane integrity. It contained a phospholipid blend of phosphatidylcholine and phosphatidylserine to support mitochondrial membrane repair and also included key krebbs cycle nutrients including NADH and alpha ketoglutaric acid, as well as co enzyme Q10. Also, included were L-Carnitine and pantethine for fatty acid metabolism.
Amie was also prescribed a B complex with methylation factors. This not only further supported her energy metabolism but, importantly, accounted for the fact that Amie had inherited a heterozygous MTHFR gene mutation known as C677T. MTHFR is a gene that is critical for methylation, a biochemical process involved in neurological function, hormone metabolism and detoxification.
Amie Skilton: One of the key strategies though for someone who’s been poisoned by mould made chemicals is to get the chemicals out and herein lies the genetic susceptibility. Mould toxins are toxic to everybody. They damage liver, kidneys, brain, they’re not good for anyone. And, if anyone lives in a water damaged home for long enough there are going to be consequences but, for about 25% of the population there is a genetic susceptibility where, and I’m in this camp, my body can’t clear the toxins and therefore my immune system remains in a constant, innate triggering, which causes all that inflammation and the adaptive immune system never kicks in. So, the key strategy around that was helping to get those toxins out of my body. And, so we used a number of nutrients for liver support, phase 2 detoxification, stage 3. Some of that was amino acid conjugation factors, herbs as well as liposomal glutathione.
Lisa McDonald: One of the key things that I think is important to look at is, really, glucuronidation. Because, it seems to be that pathway that seems to be quite common as an issue with CIRS patients and, interestingly, it would be part of detoxifying endotoxins like excess oestrogen and things like that. So, you know, if you're going to use something like calcium D-glucorate to help with glucuronidation, for example, that obviously is going to help with that elevated oestrogen that your probably going to have, as well.
You know, more specifically in Amie’s case, she might have had a preexisting condition and she might have had already some poor detoxification and that’s not uncommon. I kind of describe to patients its bit like a bucket and, like, you’ve just filled your bucket to the brim by being in a mouldy environment but, beforehand, that bucket might have already been filled because you might have been exposed to, you know, phosphates, you might have poor oestrogen clearance, you might have a lot of other things that might actually be filling that bucket.
Dr. Sandeep Gupta: So, that’s something that’s been looked at recently by a group of researchers including Emily Givler and Beth O’Hara and Dr. Neil Nathan, who have looked at which conjugation pathways are used for various mycotoxins. And, pretty much what they’ve found is that the pathway of glucuronidation is the most important and that that glutathionation, which has been talked about a lot, is probably a much more minor pathway. And, methylation is virtually irreverent in terms of detoxifying mycotoxins.
So, a lot of people think of MTHFR when they’re thinking about detoxification. And, I’m not saying it has no relevance at all but, it’s not one of the first things you’d want to look at. The most used supplement is called calcium D-glucarate and but, there’s also astaxanthin and a supplement called ellagic acid, which is not used very commonly. But, that’s another one that also does assist the glucuronidation process very strongly.
So, particularly, and a real clue for this, is if you see people have an elevated bilirubin on their blood tests, that can be quite a strong clue that their glucuronidation is not going well. Otherwise, they’d be getting that bilirubin conjugated much more effectively so that’s definitely the most important pathway. But, depending on which mycotoxin, if someone has a lot of ochratoxin A ,well that seems to have multiple pathways of detoxification, including glutathione conjugation and amino acid conjugation.
Amie Skilton: But, of course, as they come out through the bile, to limit recirculation back through into the body, I also needed to take binders. So, I was also put on a combination of binders that included bentonite clay, activated charcoal, a particular, special kind of zeolite. Again, there’s pharmaceutical binders that are a lot stronger, however, they can also cause a bit of side effects. If you detox too quickly, and my cholesterol was low, so it wasn’t appropriate for me to take them.
Dr. Sandeep Gupta: So, toxin binders are extremely important in terms of stopping the mould toxins, or whatever other type of biotoxins you may have, from recirculating. So, what happens is, if you know you haven’t got binders on board, is that biotoxins are secreted in the bile to some degree, and then they’re absorbed again in the small intestine and so they keep coming back. And, by using binders, you can latch onto these biotoxins and help them come out into the stool. And, so originally, what was used by the first research group was cholestyramine or colesevelam, which was branded as Welchol in the United States, which are basically what’s called bile acid binding resins. And, so these where thought to be the only things that are effective but, slowly with time, also we’ve found also that natural binders do appear to have some effect as well and that often you need a combination of different binders to get a good result. And, one common combination I would use would be colesevelam or Welchol, plus bentonite clay, plus charcoal. That gets the vast majority of mycotoxins in the system, out.
Lisa McDonald: I’ve noticed, clinically observed, that a lot of them are really depleted in minerals so, I’m also really careful of making sure that whatever binder we do isn’t necessarily going to bind mineral. So, I support them with replenishing their minerals and I’ve noticed, particularly potassium and sodium.
Danny Urbinder: In order to prevent depletion, as well as optimise cellular function and detoxification, Amie took a well absorbed trace mineral formula containing zinc, selenium, chromium and manganese, amongst others. She also recognised that adopting a CIRS appropriate diet would aid her recovery.
Amie Skilton: When you have CIRS there are a number of dietary recommendations that are given. Number one, the mould gene is actually also the coeliac gene and so you’re meant to eat gluten free, because gluten is going to be a problem for you. Additionally, they know that a particular type of starch called amylose can trigger some of the inflammatory marker that mould patients experience or have and so your supposed to follow an amylose free diet, which is no root vegetables basically in a nutshell.
But, honestly, I was so sick, I had very little appetite, I could barely stomach anything. I could really, the only thing I could stomach was a chocolate croissant and so, sometimes, I ate a chocolate croissant for breakfast. That, like, goes against everything I know and I understand but it was, like, couldn’t fathom eggs, I couldn’t fathom vegetables. I did eat, sort of, meat and some vegetables in the evening. By dinner time that was sort of usually my one meal of the day but, I’d have something small in the morning and, because I didn’t have the energy to cook, I would walk outside. We had a cafe right opposite our house, which is a bit dangerous, and I’d have a coffee, because I was so tired, and a chocolate croissant.
So, I honestly at that point, I was so sick, I was just not paying attention to anything else. I was in survival mode but, what I can tell you, it does affect your gut flora. Mould does effect your gut flora which means you can develop random food intolerances anyway. But, something happened to me that year that also happened to me in 2014, when I had that liver problem. And that is, I lost control of my bowels, and that was once, once on both of those occasions. And, I know now that that’s a sign of mould exposure for me, too. But, obviously the inflammation in my gut was so bad and the toxin level was so bad, my body was, like, ‘I’ve gotta get that out’. And, I've never had IBS, never had any other food intolerances, other than being aware of neurological stuff from gluten and not eating it. And, so it was very much to do with the environment that I was in and what I was being exposed to at the time. And, actually, that was the other thing that was in my protocol. It was a particular type of probiotic in my protocol, its actually like a spore-biotic and it does seem to have a particular affinity for mould illness and supporting the gut of mould illness patients, so that was also in there as well.
Dr. Sandeep Gupta: Well that’s another part of it is that you tend to get inflammation of the gut and you tend to get increased intestinal permeability as a result of low MSH. And, also, apparently mycotoxins directly have an inflammatory response on the gut so, as a result of that, people often develop a secondary gluten intolerance and, in some cases, they have positive gliadin antibodies. And, as we mentioned, there’s a big crossover with the genes in regard to coeliac disease and CIRS, so in the majority of cases, avoiding gluten is going to be needed, at least for a significant period of time.
Amie Skilton: I was really attached to the home that we were in and when they replaced the carpet I wanted to stay. They did give us the option of leaving but, I didn’t want to and I also didn’t realise that they hadn’t done things properly and that it was going to regress in that property. So. we were out of it for six weeks, staying in a friends place - also a bit mouldy - before we moved back in. And, at the start I started to recover, I started to get more energy, I started to think, ‘oh thank goodness’ and of course, at this point, my career break was running out, that would have been sort of August, September by that time. I started feeling better so I was really still very much focused on what I wanted to achieve that year. I had no idea really how serious what I was going through was and how seriously I needed to take my immediate environment.
But, anyway, I invested in a few things after that experience, one of which was an air purifier that had a sensor that was monitoring the air quality. And, it was, I’d set it up so that it would come on to clean the air anytime it detected anomalies and it would send reports to an app on my phone. What I didn’t know at that time was that mould has a circadian rhythm. Different species have different circadian rhythms, just like any other species on the planet, and what I noticed was that the air quality would take a dive around 5pm every night and I was like, ‘uh oh, that means we still have a mould problem’. And, then I discovered that they’d removed almost all of the wet mouldy carpet but, they’d left some in the wardrobes, because it was too hard to get out. And, they just slapped the new carpet on top and it was festering away and I started getting all my histamine reactions back. I started deteriorating and the lease was up at the end of October, beginning of November. We didn’t get anywhere with the real estate, they certainly weren’t going to do anything further and so they didn’t renew our lease.
We moved into my partners parents place, they generously invited us in. It was supposed to be just a temporary thing over Christmas but, right before Christmas we discovered the ensuite we were using in the bedroom was leaking and there was water coming into the carpet and the mould was really strong and the cause of that leak was a builder driving a nail through a pipe when the house was first built, 15 years ago. And, so it’s actually been leaking for 15 years and there was definitely stachybotrys there and I was sick, far sicker there than I was in manly. I actually thought I was going to die.
Janette Williams: The mycotoxins from stachybotrys can be quite harmful and stachybotrys is often not an airborne mould, its just at the surface. But, if it becomes disturbed and it becomes airborne then it can become really problematic. But, it also comes as an indication of high levels of water damage so, you think about what else could be there as well, because you’ve got high levels of water to create that stachybotrys, you’ll have a lot of other biotoxins in that space.
Dr. Sandeep Gupta: The majority of buildings in Australia are water damaged to some degree at a level that could effect CIRS patients and that’s partly due to the fact that building codes in Australia are insufficient in terms of addressing this issue. So, the way houses and units and apartments are built does not properly allow them to prevent water intrusion and condensation issues from occurring. The newer a building the less likely it is to have significant water damage however, its not a guarantee, unfortunately.
Janette Williams: You wanna get that sunlight coming into a place and sometimes even that northern exposure as well. Yeah, you’ve got your northern exposure but, you’ve got your bamboo that’s, you know, shading the house next door or the hedge and stuff like that. But, it’s basically getting the right orientation, the right building design and then it’s just making sure that you’re living there in a way that you’re not creating high dust. You don’t want a lot of clutter because you want air to be able to move around the place. Because, and once you’ve got lots of clutter, air stops moving and you get a lot of dust settling on it.
Mould doesn’t grow on glass and it doesn't grow on your aluminium window frames but, if you have dust on your windows and on your window frames and collecting in the, you know, the frame and then you end up having a bit of condensation, that’s what the mould is feeding on. So, it’s the mould is growing on the dust and not on the glass so, if you can keep something clean, and that’s the same as like on skirting boards and all stuff like that, like behind beds. It’s like, ‘oh, I haven’t cleaned that’ how they’re only cleaning what you can see, you know. As soon as you look behind furniture and you look under the bed and there’s just mounds of dust there. And, in places where there’s dust that collects and you don’t have air flow because, you know, its in a place that you can’t see, its in a corner, then your going to have higher risk for mould because, its you know, air flow will prevent mould from growing. That’s why I often say to people, if they have a ceiling fan, to just have that on low.
Danny Urbinder: The most important thing a CIRS sufferer could do is move away from the source of biotoxins. Without addressing the source they risk constantly triggering inflammatory pathways and any treatments will only have limited benefits. Amie understood this and went on to do training on how to assess water damaged buildings so she could spot the obvious signs. After then, it took over 7 months to find a new place to live.
Amie Skilton: And it wasn’t until, yeah, mid 2018, that we finally found a home that was good. And, once we were there, though, within 6 weeks, I was like, almost back to my full self; it was extraordinary. I mean, I’m so grateful that all of those supplements kept me functioning. I went back to work in March 2018 and I consider myself one of the lucky ones. I had the money to move and replace my furniture, I had family that took us in, I had supportive friends, I had an amazing practitioner and it was still traumatising and this still, it still impacts me today. The PTSD has faded for the most part but, it will be an ongoing impact on the rest of my life and obviously it impacts every decision I make from where I stay, where I travel, to what restaurants I go to, what houses I can visit friends at and things like that. So, it’s a very impactful thing to go through. I’m in a much better place in that my general cellular health is excellent and now, knowing what I know, given that I’ve had this gene my whole life and I’ve been unwittingly in and out of water damaged buildings my whole life, I’m probably, in some ways, in better shape than I’ve ever been. And, I am well enough now that I can go to a movie theatre that isn’t too badly damaged, watch a movie and come out and be pretty okay. I’ll take binders and glutathione the night before I go, when I get home and the next morning and I should be fine. If I don’t do that I might wake up with a headache and be a bit wobbly for a few days.
It was really hard and then, you know, staying when I had to travel for work, I managed to find a short list of hotels pretty much one in every major city that was safe and a very long list of ones that weren’t. But, anytime I had to go somewhere new, that would be traumatising. I’d be panicking, I would be researching where to stay but, the whole time I would be, you know, anticipating a problem or there would be a problem to some degree so, then I would have to engage what my contingency plan was and its a lot, its a lot of mental energy to expend to keep myself safe. And, that is, you know another, it’s another part of the lot of someone who’s been injured by mould.
But, can I tell you, on the flip side of that I'm actually really grateful because, knowing why I had all these weird symptoms as a kid and what caused it, as someone who’s planning to start a family soon, at least I’m not going to be pregnant in a water damaged home. And, the impact that has on children is quite well documented. The impact on, you know, in utero, as well as growing up. I now know potentially what the genetic hand my children might get and how to teach them to avoid getting sick or how to recognise it, so I’m actually very thankful that it happened when it did. But, you know, also you know, it has a bit of a downside in terms of the impact that’s left as well.
No home is perfect but, this is probably as close as we would get, short of building our own home and maintaining it from day dot. It’s a fairly new townhouse, I’m in a beautiful part of the world, right on the ocean. You know, fresh air, you know, we’re out of a big city so, there’s not, you know, other toxic burdens on my body that makes a really big difference. But, one of the things that the inflammation, the neurological inflammation that mould triggered at the time, really impacted my brain health in terms of mood.
I’ve always been a bit of a worry wart and, if anything, was predisposed to anxiety. But, when I was in the midst of the mould, I was depressed and I had what I call mould rage. Like I was angry but, I could feel it was physiological, like, it was inflammatory driven. And, Ive never had mood problems like that before or since, I’ll add. But, what it has meant is, the trauma of it, my nervous system is not as strong as it used to be and I do really want to manage my energy well and my nervous system well.
So, here’s what I do now - I actually don’t use artificial light after sunset. And, this is partly to support my circadian rhythms and melatonin production because, that's so important for brain health. So, I also eat a bit earlier than I used to eat, whilst its still light. And, then after that, I’ll use, if I have to have a device on for something, blue light blocking glasses and covered skin but, otherwise its candlelight or very specific low lux bulbs that don’t emit blue light.
And, so I go to bed, I’m a bit of a nana these days. If I’m not in bed by 8:30 pm I start to panic. But, like, I’m ready, I’m ready for sleep, I like it, whereas previously., I couldn’t switch off before 11. It’s so weird to say that because, I still think of myself as that night owl but, I’m not anymore. But, what it means is, I’m also waking up just before sunrise so, sort of 5:30 quarter to 6. And, I go outside on the balcony and I watch the sunrise and I have a herbal tea and then I always start my day with a routine that always includes yoga and meditation and that sort of provides me with a moment in the day of stillness and quality time with myself so that I can pour from an empty cup, so to speak. But, also what it’s sort of given me, is a deeper connection to my intuition. So, I know when I’m overdoing it and, perhaps I’m more aware of exposures as well, because, of that I’m a lot more mindful of the signals from my body. But, I’m really enjoying living a more balanced life and I think, in many ways, that illness actually really taught me what mattered. When you have all the energy in the world its easy to buy into ‘everything’s important’ and I have to do all of the things. When your world shrinks down to, 'do I have enough energy to eat and shower’ you do not have a single skerrick of energy to waste on anything that’s petty, mindless, superfluous and doesn’t contribute to your life or someone else's life. And, so in some ways, one of the gifts that came out of it, and there were many, it really taught me how to prioritise my energy and, to just, and in sharp relief what wasn’t important anymore just dropped away, which I just am very thankful for.