My whole mold / mould story

Part A: A look back at the unravelling of CIRS mold illness, long before diagnosis.

I’ve shared my mold illness story at every single talk I’ve given since diagnosis, because I feel it’s my duty. At this point in time, it’s an illness that is not recognised in medical literature. Treatment and testing are not funded by medicare (Aussie health care public system). It can affect up to 1/4 of the population AND an estimated 40% of homes are water damaged and have mould growth to some degree, potentially affecting those weak to mold. Do the maths and that’s a LOT of people wandering around with vague diagnoses of fibromyalgia, chronic fatigue syndrome, psychiatric conditions, arthritis, hives/allergies, cardiac symptoms and respiratory issues and all manner of other things it can be mistaken for depending on length and severity of exposure and symptom presentation (unfortunately, not always same same for all) , unable to often get the confirmation they seek that mold is impacting them and being painted with a ‘sleep disorder’ slash ‘adrenal fatigue’ brush to name a couple of labels I was given as I searched for answers, through no fault of the well meaning practitioners. I’ve come to realise through the networks I’ve joined, it’s happening to thousands of us around the world and so we do what humans do best – we form online communities, share knowledge, tips and tricks and find forward thinking and well versed physicians and practitioners that are helping us explore testing, diagnosis and treatment.

So, here we go…

When you get sicker and sicker and have symptoms that affect multiple systems in your body but blood tests say ‘normal’ and everyone is puzzled and shoulder shrugging and at best trying to treat a few symptoms you’re experiencing and you spend thousands of dollars on appointments, tests, supplements, therapies and NOTHING IS GETTING BETTER ONLY WORSE it’s a crazy, and at times, very dark experience. You doubt people, the system, yourself, your loved ones doubt YOU, your practitioners tell you ‘you’ve just got to relax more’ or “how about you go see a sleep psychologist?” and it is crazy that our medical and natural therapies systems are not better equipped to understand and teach the impact our indoor environments can have on our health – worse – that there isn’t a diagnostic line for environmental toxin either VOC related or biotoxin related (mold/insect bites). It is absolutely not clinician’s fault but our system’s short coming in acknowledging that the indoor air space in our homes, and the bite of certain little critters, are a super important diagnostic questioning component. With certain answers to that diagnostic line, one shouldn’t just be ordering a blood test but more advanced blood markers, potentially organic acid and advanced hormone panels, also an air sample or dust analysis. Because of where we’re at, people largely have to fend for themselves and go down internet rabbit holes, hoping and searching, unless they can afford integrative physician care and therapies which frankly costs a MOZZA (Australian for A LOT) once you add their fees to the protocols and medication/supplements (Never thought I’d spend $170AUD on a nasal spray but here I am and it’s the business!). Even if you can afford a practitioner in this realm, I saw three of the best in their field and they still didn’t pick it up… So it’s not even a sure thing. I’m so reassured by Nicole Bijlsma’s relentless campaigning for awareness on this issue. We did a webinar together earlier this year which traced a few of my symptoms over the years as they started building, directly to water damaged building we were living in. It’s a free download here if you want to save that for later. 

Given I’ve been able to shed light on things for myself in this arena, I feel compelled to switch any lights on for any of you or the people you love, so that you can get supported sooner with practitioners, treatments and therapies that are actually going to move you forward. This will also be about patients educating their practitioners who aren’t aware of CIRS and how horrible the symptoms can be. Many doctors and psychiatrists who are now well versed in mould illness, say “their patients brought them mold… over and over again walking through the door, it became clearer and clearer that it was a story of mold exposure and my patients educated me on how that played out for them”. 

Most of you will read this whole thing and it will not apply to you… thank gosh for that! BUT you might have a sister, brother, child, cousin, best friend, flat mate, parent or work colleague who just cannot get on top of things in their health or are experiencing inflammation or strange unrelated symptoms or they’re always a million times better when they’re away but not well when they’re home and need a new tool in the kit to explore. Please pass this on if you feel that’s the case.

ALLERGY AND CIRS ARE NOT THE SAME THING

Before we go further, there’s mold ALLERGY and there’s mold triggered CIRS (Chronic inflammatory Response Syndrome) Allergy is when your overactive immune system reacts to things that should be harmless. Examples are foods, proteins, dust mites, pollen, mold spores. CIRS is different. It’s when your body cannot process the toxins that the mold spores release into the air – you basically end up harbouring mold in your body without it being able to be ‘dealt with’ and eliminated by your detoxification system. So while allergic reactions are immediate and acute, CIRS is a slow building burn like a big bucket filling up and every time you’re back in the environment that is water damaged, your bucket tips over and shows up all manner of symptoms which you’ll read about as you go.

So, let’s go back to my first memory in retrospect of being negatively impacted by mould.

The year was 1984. When I was a kid I was a regular, healthy, little kid. Pretty skinny, super sporty, great little swimmer. We moved to a house for a year that was super mouldy and the following year to my childhood home from 10-21yrs old, and I got plump for the first time in my life. Like a puffy faced / inflamed looking plump if you look back at the photos. Weight became a mild issue from then on… As did tonsillitis, headaches and occasional migraine. Over time, I became the one that came down with something if anyone was going to… Tonsillitis became my achilles heel. My Dad recounts wiping black mould from condensation on my windows in that house and my bedroom shared a wall with the laundry.

Then, thinking back to the string of houses I lived in from moving out of home to moving in with my now husband, so 1996 to 2006, I was literally overweight in 2 of them, and easily lost weight / well / motivated / energetic in the other 3. No major lifestyle changes to note. Eat well, exercise quite a bit, never been a big drinker… 

Then let’s shoot through to the year that was 2008. I became a light sleeper. I could sleep for Australia historically (Aussie for “i slept really, really well”). It was the year we moved into the bedroom closer to the back of our tiny little terrace house to move away from the street and shortly after I noticed a musty smell in our storage cupboard behind the best. The landlord wouldn’t do anything and as I was pregnant and the stairs were precarious for the impending family factor anyway, we looked to move.

The year was 2009. I’d had a bub in late July and the landlord wouldn’t fix the leak in the bathroom that backed onto our bedroom and was showing a big patch of bubbling paint. He – so generously – allowed us to break the lease over it… (translation: We were evicted!) so we moved.

The year was 2010. Moving into the new place, I’d lost of my baby weight in the old place that wasn’t ‘mouldy’ perse, just had that new leak. Strangely I plateau’d in the new place and started ever so slowly putting on weight despite doing my Tracey Anderson videos every nap time (did anyone else ‘go there’ with that crazy? hehe) and eating plentiful veg/quality protein healthy meals and the odd treat. We were living in a newish building, builder / owner and I remember two things about the first couple of months there. 1. There was water coming up through a couple of cracks in the bathroom tiles. Weird. 2. I would sit down to read little bubba Seb a story or have my lunch on the couch, and would often feel I couldn’t take a deep breath. I put it down to new mum, run down vibes and being a bit high strung… 9 months into living there, all our leather was thick with mould, mould growing up the wooden bed legs, condensation on all windows and our couches smelt musty and even developed green tinge. EWWWW. I was cleaning the mould, no mask and using bleach (wrong!) but just couldn’t get on top of it. I had a mould person out of the yellow pages come and test and the couches came up ‘wet’ on his moisture measuring equipment as did the floors and base of the walls. He was particularly concerned about the water coming up through the tiles and thought there was an issue with the subfloor perhaps not being properly sealed. I organised for the owner and estate agent to come over and inspect the property and discuss the report the mould specialist had made and instead of inspection, and with my gorgeous 18 month old happy baby right there with me, the owner screamed at me that I was an ungrateful tenant, that he’d built this place in 1993 and it was perfect, and that clearly I didn’t know how to clean a house and that If I didn’t like it I could leave. I was confused and horrified. My son was confused because I cried and he hadn’t seen me do that before.

And to make it all extra special beautiful, we were served an eviction notice the next day. Yay, second eviction for reporting water damage. The real estate agent was profusely apologetic and said he’d accompany our search for a new place with a glowing letter of recommendation. I knew deep down that we’d have had a case if we fought this both on grounds of verbal abuse and on the ignoring of property repairs required. BUT, if we’d won, I’d have known that that person was getting our money and I just didn’t want any part in funding a person’s rental income who didn’t care about their tenants.

Then… early 2011, we got the next place we visited as it was the same agency and they wanted to appease us quickly, you could tell. “Freshly painted and new carpet” (these days I know that’s code for: Covered up mould or damp walls, renter beware!!) and a new chapter in a lovely big 2.5bd art deco with separate living / dining. EXCEPT that when I went to have my first shower in a recessed separate little part of the bathroom, i noticed black mould all over the ceiling if the alcove. ugh. I was devastated after what we’d been through the past 3 places just not being interested in fixing anything. BUT, the owner let me arrange cleaners and they scrubbed and scrubbed and got most of it off. We figured the rest was just stain and we ensured we aired the bathroom and left the shower door open so the alcove didn’t hold any steam. We settled in well.

Then, a month after we moved in, there was a lot of rain and we heard rain in the roof and started to see drips coming down the sides of ours and our son’s walls. The landlord was again nice and sent a repairs person over to sort out the leak, inspect what was up, and we slept on our mattress in the living room for 3 weeks while they fixed the guttering. Then a couple of years later another storm, more rain in roof and a major roof repair required. Then a couple more storms over the years and a couple more tile / ceiling repairs. Every now and then there’d be a little condensation mould around windows or on a ceiling but as I learnt more about cross ventilation and humidity I’d routinely have the dehumidifier on and have our cleaner do the windows, leaving windows open a good portion of the day through the year. Never at any point so far was I worried about mould and my health, but more just hated mould. It bothered and worried me to see. It never just felt ‘annoying’ and years later I’d understand why. My body just knew it was bad news.

Easiest now, is to do a time line of symptoms and looking at how many times we moved, it’s easy to see why it was hard to build savings… We were always having to move, meanwhile we were lining other people’s pockets. Such is the plight of the “I hate mould” renter, especially in a town like Sydney and on the lower end of the rental market.

So… the symptom pile up over the last 9 years of water damaged buildings. Up to years 7.5 nothing was so ‘bad’ that you’d be super worried. This is what concerns me… This illness and inflammation bubbles up and for years it can be “Oh, honey you’re just busy, try and get a bit more sleep” or “Let’s work on your adrenals” or “let’s get you on probiotics to sort out that constipation” or “do some dry brushing” or “let’s do a vitamin C detox with you”… Symptoms, symptoms, symptoms and no real investigation because we’re rigged to treat symptoms, not to address root causes that come from environmental exposures (and I say causes because it’s hardly ever just one thing!) 

So, here we go and then I’ll list everything I tried and investigated along the way and what worked in either a minor or major way and what I did / researched to crack the case.

Note: While I always hated mould and was repulsed by it / sad about seeing it in all these places, not once in any of these years think it was harming me… More that it was horrible, ruined stuff and make me feel ICK when I saw it. Even in all my early years of researching old for cleaning / removing it, nothing came up about being sick from it, more just ideas and recipes and effectiveness discussions around its removal.

Years 1-9 living in the two past water damaged places:

Resistant weight loss + slow and moderate weight gain. I’m about 12kg above my weight where I know I feel my best. I’m tall so you wouldn’t really know it. The most I’ve been able to lose in the past 9 years is 2kg and it took 5-6 workouts a week and eating like a bird just to get that result over 6 months. Folks that ain’t normal. 

Finding it hard to take a deep breath sometimes – Like a feeling your lungs only fill to your breast bone…

Constipation 

Brain fog – at first just a bit tough to concentrate, sit down and ‘get in the zone’ but building up to the point of not being able to remember a 4 digit pin code when internet banking. I remember going down to my mum in law’s farm and staying in the new extension of the house and being ‘alive’ in the brain and wanting to write until all hours of the morning because I could think so clearly… Early signs that we don’t know are ‘early signs’. How annoying is retrospect sometimes, hey?

An annual ‘summer fever’ illness where I’d get super sick with fever a couple of times, joint pain and sweating but no actual flu / cold vibes.

Year 4 onwards

All of the above plus:

Regular bouts of debilitating hay fever that would morph into a sinus infection. I had never experienced either in my life and have lived in same area of Sydney since I was 6.

Terrible cellulite

Lymphatic stagnancy  / feeling ‘glandy’ under the arms often.

Migrating patches of skin pain – Surface of my skin would hurt in a little area one day, then be gone the next and another patch somewhere else would hurt. Nothing visual, just painful to touch. No bruises or muscle pain associated.

Electric Shock – building up to dreading having to close the car door.

Shooting pains / ice pick pain at any time and anywhere in my body for 10 seconds up to a couple of minutes.

Year 7.5

A leaky, non stop teary eye on the right side – tearing all day in a steady stream and affecting my ability to concentrate even more, let alone perform public speaking engagements. The eye stopped tearing up when I was away for 3 weeks overseas. It started again when I came home.

Fluctuation of ring on ring finger tightness to quite dramatic extremes

A persistent painful point under my right rib – I had scans and they came back medically termed ‘unremarkable’ – “bit of a mystery” said doc. well, by now I start believing that I am entirely a mystery and not in that mysterious, sexy way, unfortunately.

All of a sudden hating summer temperatures, where I, all my travelling life visiting overseas family, have ALWAYS chased summer and loved it.

Year 8  – This is where it got really, really crazy

…and progressively adding all of these symptoms in about a 5 month period from July 2016 to December 2016 with a full inflammatory cascade, with the bulk of them being November 2016-December 2016 and onwards until I started figuring things out around Feb/March 2017.

(The full cascade of all the rest of the symptoms came after having a general anaesthetic for the operation to fix the eye situation, which my Integrative physician believes, was the straw that broke the camel’s back on my toxic load from the mould).

Woken by a pounding heart after 5-6 hours sleep every single night – the new norm. I was able to rationalise this when I was overseas by saying I was unsettled / jetlagged but in retrospect where it was worst, was in the budget and old little New York hotel I was in.

Metallic taste on my tongue – This would come and go.

Tinnitus – I became conscious of ringing in my ears.

Trouble taking a satisfying breath / always feeling short of air – this got progressively worse and in Cairns travelling for work, I literally was captive in the hotel room because I couldn’t be outside. Extreme humidity was just too much for me.

A feeling of being plugged into a wall / electric / highly charged – no matter how many yoga nidras, walks on beaches, lying in the grass or meditations of any kind, I just couldn’t relax and feel like I could unwind.

Anxiety / irrational fear. Irrational fear response / cortisol spikes to simple things like not expecting my husband to walk into the bedroom and then he did and I freaked out and couldn’t calm my heart down for an hour, or my sis pretending a piece of tree bark was a snake in the dark on Christmas (a normally hilarious prank!) and my heart pounding out of my chest over 100bpm until 5am the next morning. Merry Christmas!

More regular palpitations, especially after meals or wine. At first I thought the palpitations must be anxiety from travel, or from the upcoming TedX talk (even though I know I have never ever been nervous speaking in front of anyone about anything. Know yourself and remind yourself who you are, to know when you’re off!!)

Ectopic beats – one night my heart just stopped for 3 seconds and started up as if I’d been revived with a massive surge and a few random beats all over the shop That’s a LONG TIME, 3 seconds.

Tachycardia – my heart would speed up at the most minor of exertions – like even rolling over in bed or walking to the toilet in the night and stay elevated for up to an hour in those cases.

Swinging blood pressure – sometimes under, sometimes over.

Mild insulin resistance, tested and confirmed. I’d never had a blood sugar issue in my life and didn’t eat in a way that would encourage blood sugar issues in any way.

Night sweats – I’d wake up with the loud heart beats, night sweats and anxiety all at around 2-4 from about mid November.

Gall bladder pain

Kidney Pain

Elevated Liver enzymes (ALT / AST with no other apparent reason / great diet / lifestyle )

Terrible memory – I was preparing for my TedX talk (which I was feeling like a fraudster delivering, given I felt so un-darn-well!!!) and I just couldn’t remember the damn thing. Only 12 minutes long, I’d never had this issue and I was always able to speak confidently and from memory. I remember rehearsing by delivering the talk to Dr Fiona Kerr – Neurologist of all things! – who was also speaking, and just going blank. On my favourite subject. On things I’d spoken about a hundred times before.

Exhaustion – losing the will to do stuff, socialise, felt a growing sense of hopelessness, couldn’t even give a talk enthusiastically.

Peeing ALL BLOODY NIGHT!!! Even if I stopped drinking by 6pm I’d have to wake to pee once or twice a night by mid 2016 but by the end of 2016 it was 3-4 times a night and took longer and longer to fall back asleep as I was in full fight or flight.

Waking with adrenaline surges at all hours of the night, not just after 5-6 hours sleep anymore… and not being able to get to sleep again till 7am wish, right when I had to get up and get the day going for the little man.

Twitching muscles – This got super scary. Involuntary twitching muscles all over my body, any time, any length of time.

Involuntary muscular response, like my shoulder would just shrug, or a digit in my hand would jerk… kind of like when you get hit with one of those reflex hammers and your limb goes flying up. Like that.

Tremor – couldn’t hold a plate, book, phone still.

Poor fine motor skills – Realised I couldn’t separate my hand’s fingers in groups of two. Hand writing got super messy.

A slow tongue – like it was hard to speak and articulate properly

Prickling pain in chest and throat

Terrible word recall. Can you pass me the *3 second pause with an um and an erghh* salt.

A feeling of chemical eye burn or skin burn when in contact with especially mouldy environments / items that had mould on them. Touching a piece of paper in my office ‘hurt’.

Unable to sleep next to my husband. The most minor noise or movement from him would have me wake in a panicked sweat and unable to get back to sleep, so I went on the floor on a mattress in our room from December 2016.

One word for all of the above and looking at it all I have no idea how I managed through that time, to have hope and move forward. Terrifying.

And really the kicker was that at that time I had no idea WHY yet and my husband was ABSOLUTELY FINE the bastard! The genetics piece helped make sense of that much later as it did why my son had mild symptoms.

If you’re still with me: How crazy is that, right? And how does someone feel that horrible with that many symptoms and not be able to readily get help beyond some symptomatic relief and exploration? What’s worse is, there are many who experience an even more acute expression of symptoms and illnesses that stem from long term mould exposure. If you can believe it, the list above pales in comparison to some of my mouldie sisters and brothers out there. Scary stuff.

I want you to know that you guys had a lot to do with my desperately wanting to crack this. I wanted to figure this out for all of us. I’d known many in the community with persistent issues of all kinds for years to varying degrees – what if whatever this bonanza of weirdness happening to me could be cracked, figured out and support others? I barely did any work from November 2016 to March 2017 and the amazing Ingrid my assistant currently on mat leave carried us through, she truly did. I went inward, barely saw anyone, and thanks to being awake and completely wired most of the night every night, I researched. It was my only comfort. I poured over symptom profiles of so many illnesses, trawled through endless discussion forums of chronically unwell people, I got my genetics done and analysed through 3 different decoding platforms to see what might come from that, I got a full stool test done, I had every blood test I thought I could get… I saw well meaning doctor after naturopath who as things got worse suggested everything from sleep psychologists to adrenal fatigue and more allergy testing and while yes I was reactive to anything and everything, sleeping hideously and my adrenals were shot to pieces, I knew deep down that none of that was getting to root cause and that’s where I needed to go. I hadn’t found my health care team that was going to get me through this one yet and health practitioners being 40 hours a week in their clinics don’t exactly have hours to research 1 patient / client’s case. BUT me, I had that time. I couldn’t do much else and one morning at about 3.30am, I started to crack my case and found people who started to help me move the needle.

So here we go on part B:

The pieces of the puzzle, what I tried, what failed and what worked.

In the years leading up with the mild symptoms, the tricky thing there is it could have been anything and it could very easily be rationalised. Not enough fiber, not enough healthy fats, more broths, less stress, more sleep, more meditation, more dry brushing, blue blocker sunnies at night, taking more time out to relax. It’s very easy to believe that what YOU are doing isn’t right and YOU are the reason (your lifestyle, diet mix) are the issue. So you go down all the lifestyle rabbit holes you possibly can to find change and while here and there a few things work and seem to move the needle a little, really, there’s no big picture progress and things just get a tiny bit worse over time. That’s when we know it’s time to look to the environment – home or office / place of work.

Cut to the eye operation lead up.

When I saw a naturopath, 2 GPs, an ophthalmologist and the ocular plastic surgeon, I said to each of them “Don’t you find it strange that when I went to Mauritius my eye stopped leaking and when I came back, it started again?” 

Everyone, and so I, put it down to swimming in the sea and sunshine washing the area out well each day, contributing to the problem temporarily going away. And so I had the operation.

When things started to get really bad progressively after the surgery, I knew that given I felt exponentially worse after the surgery this was the first ‘thing’ I was going on to try and figure out: what is it about having an operation / anaesthesia that could make one’s health take a turn for the worst? (This is the research that lead us to creating the safe surgery guidewith the support and contribution of the wonderful integrative paediatrician Dr Leila Masson  2 years later, to help people thrive through the unexpected surgical needs that can happen throughout one’s life)

  1. An integrative doctor I’d seen 2 months after the operation had got me to spend $500-ish on testing to look at why I was putting on more weight and a bit anxious as well as foggy brained and from the results (elevated homocysteine, low D and zinc as well as a homozygous C677 MTHFR) then charged $390 for the consult and prescribed a bunch of supps worth around $300 also and a high omega 3 diet with tinned sardines / mackerel salad lunches, lots of spinach for folate, lots of gut healing slow cooked broth and gentle plant fibre from avocado to address the constipation escalation post surgery… It was at this time that my heart started pounding loudly for no reason and in retrospect, especially after meals but at the time I hadn’t pieced that together, so I asked to speak to her for 5 mins and ask a question but they wanted to charge me another $390 to see her IN 2 WEEKS about my heart symptoms instead of letting me have a quick chat to ease my mind and book my follow up, so I just stopped all of that and thought after the trip I was going on, I’d find a new doctor. Absolutely nothing against doctors integrative or otherwise, but I’ve since come to insist that people see a new practitioner as an audition process, and doctors / practitioners with new patients too when it comes to chronic hard-basket situations, all really thinking about whether they’re a match and going to  make a great team: Think “is this person genuinely enthusiastic to be ON MY TEAM and listening to what I’m saying? Am I getting the results I want and do they readily workshop treatment pivots / explorations if things don’t go the way they anticipated they should? Are they happy to explore out of the box options when traditional protocol isn’t working?”. I often wonder how many thousands of dollars we waste not wanting to rock the boat, in this regard. 
  2. Because my heart was doing funny things, I got a referral quick smart and went to a cardiologist. I ain’t no hippy chick who’s going to ignore things and take a ‘heart healing herb’ and hope for the best. The heart’s nothing to muck about with and so off I went. The day before my 41st birthday (happy birthday!) I got an ECG, an ultrasound and a halter monitor that I had to wear for 24 hours. At that point my heart was doing weird things about 6-10 times in a 24 hour period and beating a bit faster / pounding a little here and there. All tests came back ‘normal’. I was shocked and relieved but very confused. The cardiologist told me that for a woman my age they weren’t concerned until 30% of the heart beats were abnormal. I thought of dear Dr Sinatra, the veteran cardiologist I feature in our podcast and Inflammation Ninja course and think “really? I don’t think Dr Sinatra would agree!”. Because it got worse I went back a month later for a stress test and pounded my feet on the treadmill and again, ‘heart fine and don’t come back and see me until you’re in your 50s. Your heart is great!’. It’s easy to see how someone with weak convictions / someone vulnerable at this point might start to think they’re crazy and must be imagining things, right? Anyhoo, another $1500 later…
  3. An acupuncturist I was seeing called general anaesthesia ‘mini death’ and I thought that was interesting – one relies on the body putting itself back together again; all the neurons firing again; and yet, it seems so many of us don’t have a smooth sailing anaesthetic recovery. There are plenty of studies to go over in the literature on neurological issues after anaesthesia; clearing issues etc. So I started to look at side effects of anaesthesia on people in the scientific literature. Two things kept coming up, 1 was neurological damage and 2 was adrenaline excess. Ok… that’s something. But WHY? Well, largely due to the way certain people poorly metabolise aesthetic various components. I knew from a medication metabolising gene test my naturopath had me do a few years prior, that I was a poor metaboliser of many medications due to a homozygous SNP of one of the CYP450 genes. So I started to look at the drugs used in my anaesthesia and sure enough, some pass through that SNP to be metabolised, so it looked like I was having a toxic reaction to anaesthesia. BUT so many other symptoms had nothing to do with that so I knew I wasn’t quite there yet.
  4. As I got sicker with the symptoms piling up I tried everything – even sleeping pills that I asked my family doctor to look on the MIMS data base and at least find me one that wasn’t metabolised by the CYP450 C2D9 SNP, which I didn’t have, so that it would minimise any negative effects. It didn’t touch the sides. I took them for 3 nights and figured I might as well save my body the processing of the medication efforts, given it wasn’t doing anything, anyway… One doctor who I’d seen for something years ago suggested Beta blockers to help chill me out from this severe ‘high strung / anxious’ vibe. (I was scrambling around taking an appointment with anyone and everyone to see if someone might have a clue to move forward with). I took 1 and that’s where that ended. Horrible feeling and sent me into an anxiety stratosphere instead.
  5. I saw a wonderful naturopath who helped me achieve a little less anxiety and ‘high strungedness’ with L-Theanine and a morning cocktail of Rhodiola / Withania herbs but we still couldn’t figure out how to make any big inroads nor possible reasons other than the apparent dramatic instigating effects of the surgery experience.
  6. A word came up in some of the articles by doctors on anaesthesia components – ‘histamine releasing’. Knowing I was a poor detoxer maybe it was just a bunch of histamine kicking around. Sure enough, my histamine blood levels came back out of normal range and high on a blood test (that you don’t get through medicare, you have to ask for it and pay for it and a regular GP doesn’t then have scope to help you with the result through diet / detox) So I then looked at each aesthetic component and researched histamine impact and 4 of the 9 ingredients in my cocktail for both that and my son’s emergency C were histamine releasing. Interesting. So, I started to experiment with lightening my load with histamine and eat a low histamine diet and my heart stopped being quite so crazy after meals. This really helped and fast and it’s the basis of the SOS inflammation meal plan Steph and I created for Inflammation Ninja .
  7. My wired / histamine / high adrenaline / low DHEA  got me researching neurotransmitters and that’s when I came across Dr Jess Armine. Dr Armine, a registered nurse and chiropractic doctor by trade, has a son with schitzo affective bipolar disorder and became passionate about going very in depth on biochemistry as a result of wanting to the best by his son. Achieving results for him, he has gone on to support so many families and people who end up in the ‘too hard basket’ of the belief that there is ALWAYS a way to move the needle on chronic illness and hearing Jess’s podcasts and interviews, I took the plunge and booked a session – gulp, $495USD for the initial 90min skype appointment. BUT, I was desperate and after hearing him share his thoughts on neurotransmitters, if he could maybe help me reduce my ‘excitatory’ / super high strung / unable to sleep vibes, then perhaps I could get enough rest to think logically about peeling back a few more layers.
  8. It took me 2 hours to fill out the ‘pre session questionnaire’ such that it was SO THOROUGH – from relationships to locations you’ve lived to types of houses / when houses were built / near power stations / factories / ever had EBV / bitten by tick / periods / health as a child / any evidence of recurrent infections or illnesses / ops / anaesthetic / children / types of birth / all recent bloods and on and on and on… I shared things in that history I don’t think I’ve ever told anyone!
  9. Within 2 weeks of seeing Jess and a few tailored supps I noticed a 15-20% improvement. He is wonderful! This was absolutely amazing and despite it still being so far from 100% I felt like I could run a marathon compared to where I’d been. I wasn’t twitching all day and night. I was sleeping a tiny bit better. I wasn’t a complete nervous wreck. We were mainly working to clear the toxicity from the anaesthetic which had compounded all the mould stuff, we later realised – the ol’ straw that broke the camel’s back.
  10. We started working on mould as a possibility even though it’d still be a few months before I tested our place. It fit perfectly with CIRS what I was experiencing. Multi system inflammatory syndrome. Even though I couldn’t afford the testing yet he went by the logic of: Build a stronger body = more resistant to external stressors so that was great. We worked together for 4 months to get me to as good as I could be for now. Plateaux’d. That’s when he suggested I get the place tested for Mould and so, I did, and going through MouldLab Newcastle, ordering the ERMI and HERTSMI (just under $4o0 – see what I mean about unrecognised illnesses being so unfair in all the treatment and testing you have to do on your own, unsubsidised dime?!). The test came back as a confirmation with the highest ‘danger’ result you could get with options to “Either get this property fully remediated by mould remediation professionals, or move out immediately. The mould-affected person will not get well living here. And… bingo. I’ll never forget learning about CIRS on one of my late night searches through histamine chat groups (’cause that’s totally a think in 2017 to be doing! One has to laugh or one would cry) and seeing a few people talking about mold exacerbating their histamine intolerance. Mold? Let’s check it out. Then found Dr Shoemaker’s website who coined the phrase and then found his symptom chart. WOW. It’s like my whole past few years was neatly mapped out in a chart.
  11. I chose Kate Johnston from Kore Wellbeing (she’ll be back from Mat leave 2019, February) as my local naturopath who loves a ‘too hard basket’ and is an excellent investigative practitioner, an amazing empath that listens so well to hear for clues and understood and conducted Live blood analyses, that Dr Jess wanted me to check in with often due to the need for monitoring cell health – leaky, unhealthy cells, can’t hold nutrients well and I was not holding onto my nutrients well / good for identifying potential viruses or parasites, too.
  12. Once I knew it was mould, I wanted a top mould-literate doctor. I’d interviewed the wonderful Dr Sandeep Gupta for the podcast (show #55) but he was fully booked and in QLD (hey by this point what was throwing in a round trip to Brissy for my patient $$$ – nothing shocked me any more and as my life savings dwindled, I could see the light at the end of the tunnel, finally, BUT… I found the wonderful Dr Min Yeo who is an integrative GP in Sydney’s east, a recovered ‘mouldie’ herself and fully versed in mould treatment and recovery protocols, as well as testing that needs monitoring to gauge progress (because the markers that you test for mould illness aren’t ones you see on the regular Dr’s test order. ). She is a wonderful, wonderful caring doctor, fiercely intelligent and curious and truly listens to the patient for the clues rather than jumping in with assumptions.
  13. And, while there’s much more detail that could be shared, and I will, I just wanted to get you guys up to at least here. I’ve finally started to heal. It’s a process, there are relapses if I’m exposed which are always a bit disheartening and sometimes bring some mild anxiety because I never want to go ‘back there’, but I breath through it and hit my SOS regime. It’s definitely travelling forward more than backward overall, and having my sharp thinking back is just the best feeling in the world. We moved in February 2018 (see podcast #77) and I started treatment that week in February. (mould detox is mostly pointless while still being exposed although as I did, you can still get a little better by supporting the body through anti inflammatory diet/supplements and some neurotransmitter support which is useful to do as – like me – not everyone can just pick up and move in a month)
  14. I’ve created Inflammation Ninja, with Steph Hinton a naturopath on the Low tox team and my right hand woman researcher who is also impacted by mold with CIRS presentation, and incredible Dr’s from around the world such as cardiologist Dr Stephen Sinatra, Dr Terry Wahls – famed MD who reversed her advanced progressive MS and went from wheelchair bound to 40km cycling in a year, Dr Min Yeo (my doc!), Dr Elen Ap Thomas and more… to help people kick multi system inflammatory illnesses’ severity in the BUTT far sooner than our current system seems to allow us to, which in turns saves people thousands and thousands of dollars ‘ investigating/stabbing in the dark – heck, even SURGERIES like the eye one I had that I didn’t need. I was simply so inflamed that my tear duct closed up. Simple. And of course, some people have a legitimate obstruction /issue that means this surgery is a lifesaver, it’s just that I didn’t need it.). I cannot have people wasting away, feeling far from themselves for years if not decades AND spend thousands on the privilege. It’s broken. This course was my little contribution to help fix that for some and for $85 – a trip to the average doc’s office.

 

A recap and some resources

Please, our doctors and holistic practitioners are wonderful people of course not wishing ill and everyone’s just doing their best here with what they know. I do not want to take away at all from the wonderful work so many practitioners out there do to help in so many ways. The issue here isn’t that people missed it, the issue is that we need to start placing bigger importance on our homes in our diagnostics and testing.

Mould illness / CIRS (chronic inflammatory response syndrome) is not a ‘medically recognised illness’ by the medical associations out there, so it is not taught to be found by any health professionals in their current training, it is not taught as operating differently from mould allergies and it is not supported with government funded testing nor treatments. 

What I see and hear about time and again is that it is missed for years if not decades and people spend thousands (hello, I sure did!) seeing doctor after naturopath after doctor and asking landlord after landlord to maybe do something about the mould… People end up being made to feel crazy, some end up completely broke, some end up on disability pensions because they literally cannot move anymore… It is a devastating state of affairs.

What’s worse is you can be the “crazy hypochondriac” at home if you’re the one with the genes that is affected because your partner or flatmate could be totally fine, meanwhile, you’re there on the floor in foetal position going crazy not able to figure out what’s going on.

According to Dr Shoemaker who coined the illness “CIRS” and has treated thousands of patients in his career, there are an estimated 25% of the population unable to clear mycotoxins – the toxins that mould spores produce – and an estimated 40% of buildings water damaged in some way by being either too humid inside and creating condensation and mould to grow or with systemic issues from leaks or poor building through walls and subfloors. The way you know is by getting your HLA-DR / DQ genes tested. You can request this and other tests depending on where you live, through your doctor. Toxic Mould Support has a comprehensive list HERE.

If you want to learn more about CIRS, please listen to the show I did with Dr Sandeep Gupta and if you feel you’re affected, his “Mold Illness Made Simple” course is wonderful, easy to understand for the layperson, and extremely thorough to help you get the support you need, from diagnosis to treatment options and considerations.

If you then want to hear me share how I tested our old place, tested for the new apartment to move into and logistically how the heck we moved house, avoiding contamination of the new place with old house mould and dust, SHOW 77 on the podcast is the one you want.

I have also developed Inflammation Ninja, an anti-inflammatory on-demand e-course with meal plans, testing advice and more. Definitely check it out if you’re searching for answers and looking for some simple and quick ways to support mould illness and feel better.

Other resources you might want to explore are:

Dr Shoemaker’s Surviving Mold website

Dr Mary Ackerley’s “Brain on Fire” paper outlining the effects of mould on the brain by well known psychiatrists

Toxic Mould Support for the most comprehensive Australian details on diagnosis support, treatment providers, remediation and community.

MouldLab ERMI / HERTSMI testing – use these to test your home’s dust for mould spieces identification and levels present

Hygrometer for testing humidity in the air space

Moisture meter for testing damp in walls

Nicole Bijlsma’s resources on Mould and Building Biology network. 

Most of my supplement regime after a lot of trial and error with the addition of a Vital Minerals blend and the medications that my doctor prescribes, which include that million dollar nasal spray I mentioned (Synapsin) and Cholestyramine which is one of the most effective binders to the mould. (And by the way these are for ME. Please speak to your practitioner before taking supplements. I always run a ‘should I / are there any contraindications’ if I want to try a supplement, by a qualified health professional to avoid wasting money or unnecessary risk)

 

So hopefully from there you have lots to go from already and I know I’ll want to add more and also do a follow up post so if you still have questions, just pop them in the comments here so I can address them either here or in the Part 2.

Here’s to getting this recognised formally AND to people experiencing the healing they deserve. I’m by no means better yet and still very very sensitive to mouldy environments which can set me back a few days, but I’m more forward than I am backward and very grateful to be working through everything.

Low tox. Happy, healthy people. Mould illness FREE!!!

 

Alexx x

Comments 27

  1. Hi Alexx,

    Thank you for this detailed post. I’m going down this road myself at the moment. I have CFS and have been unable to work or drive for nearly three years now.

    I recently went on a ten day trip to QLD and expected to crash on the day we arrived or the next day and instead I was symptom free for three days. I had a minor energy crash in the middle (weather changed, plus we had used the a/c the day before) but then rallied again at the end. Within a day of being home I’ve got symptoms of a throat infection, exhaustion, brain fog and I’m emotional – it’s been two weeks since we’ve been home and I’m so unwell.

    I may be clutching at straws (and boy, are these straws expensive!) but this is the next avenue I’m trying.

    Glad you’re on the mend (we are in a shared Facebook group and I saw the pillow post)! I want my life back too

    Jen

  2. Thank you soooo much for this information. Had no idea of any of this. Put my symptoms down to An ageing body and maybe it’s “normal” but deep down I’ve known it’s not normal.

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      So glad it’s helpful Jennifer. I’ve added from points 6 onwards too with more updated over the weekend re steps to heal / test / practitioner info etc. May you feel fantastic again soon xx

  3. Thank you for your continued effort to educate about mould illness. I am at the beginning of my mould journey. After 19 years of suffering from ME/CFS, and surgery for skin cancer earlier this year, my health took a sharp decline, and I have been researching ever since to find some answers. Mould has come up as a possibility. It is SO helpful to hear your story and to glean some info how to proceed with testing and treatment. I can’t thank you enough, Alexx. Please keep doing what you do so well.

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      Very welcome Kylie. So sorry you’ve had such a crappy time of it. I’ve added from points 6 onwards too, with more updated over the weekend re steps to heal / test / practitioner info etc. May you feel fantastic again soon xx

  4. Hi Alex
    Wow! Thankyou soo very much for taking the time to document your journey thus far. It is so very helpful. I’m currently trying to work out what my ‘mystery illness’ is and have been looking into CIRS since listening to your podcast. I am seeing so many different people and forking out so much money. I don’t know which direction to turn. Is there any way you can share who ‘your team’ are who are helping you to heal? I’m also in Sydney and it would be so helpful to go to the right people first off.
    Many thanks
    Mel

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      Hi Mel. Very welcome. And what a journey it’s been! I’ve added from points 6 in the post onwards too with more updated over the weekend re steps to heal / test / practitioner info etc so I hope that’s what you were after. May you feel fantastic again soon xx

  5. Hi Alex, thank you for sharing. I’ve been treating mould illness with success which is great however I also have MARCoNS which I am having trouble shifting. Did you experience MARCoNS? If so, have you managed to clear it and if so what was your treatment protocol?
    Many thanks,
    Karen

  6. Thank you for writing your story to help others. You may remember I did contact you telling you a bit of my CIRS story. I was diagnosed in 2015. (also in Sydney) It took 2 years to complete the whole house remediation and replace all our personal belongings/ furniture etc. Now living in a mold free home, I am slowly going about detoxing mold out of my body. Coffee enemas 3 times a week has been the greatest help so far out of all the different things I have tried. Now leading a fairly normal life compared to being unable to walk and so many other symptoms for years.

  7. OMG!!!! I was just checking a confirmation email for a Dr’s appointment when I saw your email today. I have been struggling for years with mould related illness from being a teacher in a mouldy classroom and mouldy school. At one stage it was so bad it appeared I was having a stroke and spent a week in a stroke ward only to be told to go home in the same state I entered hospital because it was just apparently “stress”. 7 years on I am a bit better but like you have spent a fortune, had to work part time (as I just can’t get out of my toxic school no one in the Dept believes in such a thing as mould) and still on a quest to wellness.

    Thank you for your insight and information. I am going to spend the day reading through the links and researching more.

    Take care and thank you so much

    Cheryl

  8. Thankyou so much for this comprehensive history ! I think you might have solved a mystery of mine and thanks for making so many recommendations on what to do about it.

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  9. Hi,
    Thank you so much for all your information. I have been researching this topic for some time as I am very concerned about my childs health (she is 4 years old).
    We moved into a new apartment in the last months of my pregnancy (we had no idea there had been serious water damage). It was a hot Summer in Queensland and the ac unit was on continually. It made a terrible noise which the real estate agent checked & said it was an oldish system. Except it slipped through the cracks & didn’t get checked. I started feeling very unwell, my daughter of 20 months had bronchitis and my new baby was born 5 weeks prematurely as my blood sugars started getting high despite a healthy diet with no refined sugar. We brought our healthy baby home and I sat feeding her at night with the ac on most nights. Within a few months she cried often, i was told she probably had colic but within a few weeks she had her first cold ( despite us being home for her fourth trimester & having very little contact with the outside world & illnesses) her breathing seemed laboured at times and she was wheezy and chesty which we saw a Doctor for immediately. I was told over & over it was a bad cold. I stayed awake most nights while my baby slept on my chest so I could keep her upright snd check her breathing often with my toddler laying next to us (she was still unwell & seemed very sad at times) which was not like her! Anyway to cut a long story short. My husband opened the ac unit as it was so loud that other tenants in the complex had now started to complain about the noise! It was completely black inside. We switched it off snd called in a mould expert. The test came back with the highest reading he had ever seen. He refused to test with the ac unit on as he felt that was too dangerous. We were told to leave that day. We moved to the beach for a few weeks until we found another home. I got rid of all my daughters toys & we all started to feel better. Now 4 years on & my daughter regularly has colds, breathing difficulties, chest infections, glue ear which we just can’t seem to shake. I am met with a blank stare whenever I mention the mould that she came into contact with as a premature baby & whether it could have caused any lasting damage. I feel that I would like to do some testing to rule it out but despite my research I don’t know where to start. We are in Brisbane & any recommendations you have would be very much appreciated.
    Sorry for the long post.

    1. I recommend Dr Sandeep Gupta. He practices in the Sunshine Coast. He is probably Australias top Mould Doctor. I have seen him a couple of times. He is very good and very knowledgeable.
      Hope this can be of use to you. I understand your case, being through the whole mould journey myself.

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        Yes he’s wonderful Elisabeth – He’s the show guest on the podcast I reference in the post so that more people can learn about his work. So happy you’re through it now x

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      Don’t apologise. What a journey you’ve been on. Sending you healing hugs. Have a listen to show #55 that I link there with QLD mould specialised physician Dr Gupta. Would be amazing for you to see him x

    3. Hi Sara,
      I don’t know if you will see this, but I just have to share what’s worked for me. I was so desperate living in a mouldy home for 5 years that I would try anything. I had chronic diarrhoea, itching, softened nails and couldn’t seem to make vitamin D no matter how much sun I got. Then I jumped online and learned about the microbiome and it changed (and possibly saved) my life. I took some dirt from a sunny, uncontaminated area of my garden, mixed it with homemade clove oil (crushed and steeped 2 hours) and stuck it up my bum with a cotton bud. Instantly, my diarrhoea went away, I could digest meat again (hadn’t been able to digest steak for over a year), my energy came back, my brain worked better and my mood and appetite improved a million times. You need to do this for your child to replenish the good bacteria they lost as a result of the antibiotic activity of the mould. There is no other way past the age of 3-5 as their stomach acid will kill most of the good bacteria they eat before it can make its way to their colon, where it’s needed. Failing this, they will continue to have allergies, colds, asthma, autoimmune conditions and maybe even autistic symptoms.
      I sincerely hope you can fix this problem soon.
      Best,
      Alita 🙂

  10. Thank you for taking the time to write such a detailed & honest account. By sharing your story you will save someone’s life. This could be the article that shines the light on what is really going on with them. I too have been going from doctor to doctor trying to find out what is wrong with my kids & I. I really like how you showed in your work that its not like you went to one doctor & they diagnosed & cured you. You have to be the captain of your ship, you have to do your own research & go down that rabbit hole (which is quite warren of conflicting information), interview doctors & specialists and then use your gut & smarts to work out what advice you should act on.

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      Thanks Jacinta. One absolutely must be the captain of one’s ship. There can be brilliant practitioners out there but if they’re not the ones for YOU for the journey you’re on, then you gotta keep working to find your team. All the best to you and your little people x

  11. I think you just saved my life!! I’ve been suffering multiple strange symptoms for what I’d say has been my entire life!!
    I am now 33 and have only been getting worse over the last few years as I have been researching my “crazy” symptoms after a Rheumatologist did the pressure point test and diagnosed Fibromyalgia (whilst pushing me out the door for the next patients $300!)

    I was extremely exposed to mould as a kid, renting as well, of course it was repaired but little did I (or my mother) have any idea that the exposure could be the reason for my progressive symptoms!!
    Thank you so much for sharing your story and your amazing medical team!! You really might have just saved my life, thank you!!

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      Oh Jess – goosebumps! Best of luck to you now that you’ve turned a little stone with something to move on with x

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  12. I have recently (2 months ago) discovered I have CIRS after 7 years of pretty much what you wrote as your experiences above. It is so heart breaking when you try EVERYTHING to get better health but nothing helps. Your symptoms only build and build despite these efforts and money. And every doctor you visit says you look completely healthy on paper. So the mind wonders if it’s all in your head, even though you know its not but it must be?! No one has answers for you! It is extremely lonely.
    I still remember the day I went to my massage lady after her return to work after a period off working for ‘health reasons’. When I enquired around these health issues, everything she said just shocked me. I just stood their covering my mouth trying not to cry! It was every single symptom I was experiencing! She sent me documents around Dr Shoemakers protocol and her doctors details. A sense of relief filled me that I MAY finally have answers. The doubt quickly set in that it will be like every other visit to a doctor, there was nothing wrong with me! Thank goodness it wasn’t, finally!!
    The diagnoses was amazing, to have answers and a doctor that understood was truly life saving. Without answers soon, I wonder where my depression (from CIRS) would have ended my life at the age of 30!
    Two months in I am still battling through understanding CIRS and what it involves for me. And my five year old son as he has also been diagnosed with it. It’s so far has involved thousands of dollars in testing, which are so worth the answers, inspection of our house and the discovery of mould filled walls. No signs on the outside, but the walls are full! Now issues around a leaky gut and not being able to tolerate the medication which could finally give me some relief. The leaky gut and my investigation around this has lead me to your website.
    What a journey!! So overwhelming but so worth the possibility of health and a life worth living again!!
    Thank you so much for telling your story. I am determine to share my story and help as many people as I can. These resources you have listed will assist me with me journey x

  13. Have you had your thyroid tested? Most of your symptoms sound like under active thyroid. The problem with all these natural remedies is that they take a lot of time and money. Most people can’t afford to just move house and even if they can, mould is prevalent, even pervasive, on the east coast of Australia.

    People can get obsessive about living a toxin-free life. It’s an American thing and has evolved to Australia. That counters any benefit.

  14. Oh my god. It’s 3.08 in the morning and I have been researching for months and months regarding histamines, oxalates and mould!
    I‘m suppose to be tackling the current low tox course but have been totally occupied with my sons health and mine on the side to which I haven’t been able to get a handle on for years. I suddenly woke thinking I really need to look further into mould and found this article.
    Talk about the moon’s aligning, this can’t be a coincidence.
    Thank you Alexx. Looks like I have a lot of catch up with my current course and further testing and studies!

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