CIRS diagnosis

(Note this post has been updated as it was full of grammatical errors, including ‘Lime’ instead of ‘Lyme’, which the personal acknowledgment of this public mistake has shown me that I’ve evolved as a writer; whereas once I would have been curled up in the foetal position, sucking on my thumb, ruminating on the humiliation of it all, I can now laugh about it.)

First, the elephant in the room:

What I liked about Dr Little was he was always right about everything, except for this one thing (I hope. Because if with this CIRS diagnosis, I can actually recover. Fully.). Something else I liked about seeing Dr Little, apart from the payback of good health when, way back in 04′, I took the leap, making major changes to my living arrangements and use of chemical-irritant based personal care products (such as my beloved fragrances) and practicing avoidance of allergens in my living space, was the way how if I went in there with some internet research, like the time one reader, A Country Woman Paints (check out her paintings. Hell! Buy one, even!), suggested that I had Mask Cell Disorder (based on one photo of a butterfly shaped rash that often appears for no apparent reason on my face (all other rashes have traceable reasons but not that one), when I showed him the photo, although he doubted I had it based on my other symptoms, he still tested for it. And, no! Dear Adelaide, I didn’t have it; but thank you so much for caring enough to suggest it xx. (Having a diagnosis, the knowledge of what is wrong with your body is like owning the map showing the way out of the Labyrinth of chemical sensitivities; for me, anyway.)  However, he would also run tests for other, more likely things, like Heliobactor. Immunology, I get it. And it’s very important, a fundamental element of chemical sensitivities.

Dr Little has been very helpful for my Inhalant Allergies. Now, if I’ve had CIRS all along, that’s okay, there’s no ill will because the credible research into this condition, which is basically, mould illness, is less than 5 years old; and it’s not his field. So don’t go blaming my favourite, number one, most respected, doctor (ever!), Mum!

He wrote me this letter to get people to understand about the ‘the Build an Eco-Friendly, Allergy-Free House‘ Project. He sorted out every food intolerance; and stopped me from chasing natural therapies that may or may not have worked but would have cost a bomb! I’m so grateful for his help over the last 14 years. And I will be running this diagnosis by his expert eye as a second opinion and blogging about it, of course as soon as I can :)

But the last 4 years, I’ve just been sitting back while I get sicker to the point of now needing a carer.

My suspected diagnosis, before 17 blood tests, an MRI with the additional NeuroQuant element, which automatically segments and measures volumes of brain structures and compares these volumes to norms, was instigated on my first appointment with Dr Mark Donohoe and was immediately suspected as CIRS.

“I don’t present as the average patient with MCS,” he said. I guess it’s that part where I am better with new items and can’t have old things, I’m not too sure.

The MRI was ordered fragrance free by Dr Donohoe. The clinic staff at Imaging Associates in Box Hill did an awesome job, making it so I could come in early in the morning before any patients were there leaving fragrance molecules in the air or on the equipment.

Is an MRI dangerous for someone sensitive to chemicals? Not for me.

If you were as sick as what I was, am, have been, you will say yes to medical intervention, if you had your right mind. However, could this be done if a person has EHS (Electrochypersensitivity, closely linked with MCS); and denied even more furtively over the years using Barret citations (the Quackhead from Quackwatch who was involved as a psychiatrist in research proven quackery in itself). An alleged Bastard Child of Medicine who even more allegedy didn’t even pass the bar exam!, therefore was never even certified. Allegedly.

I enjoyed the MRI scan as you can see below!

I have no knowledge of Lyme, and have yet to do any research on it; I’ve only ever had one tick bite back in 88′ in the NSW bush but don’t think this is related. Dr Donohoe said it’s more indicative of another type of bacterial infection, which is yet not clear. I already know my main issue is mould; and he agrees with me! I’m not a doctor, obviously, sitting here in my yoga pants, on oxygen, music blaring, feeling great: I just had 2 days in fresh air. See! My symptoms clear when in clean, dry weather.

I got to mop the upstairs Modakboard (MgO board) floor of the new house during our last warm spell. I used boiling hot water and borax. I’m running some fans for circulation downstairs and upstairs. 2 days fresh air! Is all it took to bring me back to normal and I can still feel it, Plus, it rained today and I didn’t get sick, ‘Punched in the nose, face pulsating pain from sinuses kind of sick’; but I know it won’t be long until winter hits and I’m under the same amount of pain again as the last 4 winters since living in 2 WDB.

So these are screen captures of the scans:

My NeouroQuant MRI scan done at 'Imagining Associates' in Box Hill, Melbourne, Australia

My NeouroQuant MRI scan done at ‘Imagining Associates’ in Box Hill, Melbourne, Australia

And massive note: you can’t get a Neuroquant MRI just at any MRI place. As far as I know, there is only this one place, Imagining Associates at Box Hill who do this. For more information there’s a wonderfully helpful but private FaceBook Group called Toxic Mould Support Australia; they also have a website with the latest information.

And now, my numbers put through this handy spreadsheet:


Which translates in Doctor’s speak as the request for MRI:

NeuroQuant MRI at Box Hill for Mould and Lyme (meaning other bacterial infection)

NeuroQuant MRI at Box Hill for Mould, and Lyme (meaning other bacterial infection)

By the end of the day, we had been to Costco, which was fun as always. Rare fun, Enclosed in my 3M mask, which covers my face and then a scarf, which I often let fall in my shopping frenzy. But later… Sometimes, if going near fragrance, I have to wear the scarf. But it was after that Costco visit my day turned dark. While visiting people I became sick because of others who came wearing fragrance, and then another. I’m treated like I don’t exist and they don’t have to not tell people they can’t come in because Misha is visiting, It was that visit where I took off my mask and got sick from kissing the face of fragrance face cream, Nivea or some other stuff: the taste of it lingers in my memory.

I might just go to Costco next time. I’m not seeing anyone who uses fragrance products anymore, it’s just too hard and my heart hurts when they get it wrong, which is actually more difficult to deal with than the actual pain and recovery.

Having the Neoroquant MRI at Image Associates Box Hill was a fun, relaxing experience as you can see:

Yeah, so I have moderate mould sickness. I still have no bricky who can start for another 12 days. And I say the ominously, winter is coming. My house is framed with wood and I can’t afford for it to get wet. We are going to try to wrap it in more plastic. But I’m worried about breathability.

It’s so hard to ring around for help when you’re not well. It’s like days get wiped off the calendar. I can’t think straight when I’m not well or I’m in this house.

My rental didn’t turn out. But on the positive: we found a great duct cleaner who went truly fragrance free. He only used tea-tree oil anyway. But I told him I needed no scent. He used new equipment. I’ll post it on another spot for easy reference but for now, it’s Mark’s Duct Cleaning in Melbourne.

Mark’s Duct Cleaning. True Fragrance Free Duct Cleaning. Cost an unnecessary bomb.

The new house didn’t work out because the fragrance made me sick when I put the heating on. I have to pay rent, or my carer does because I can’t pay two rents until they find another tenant. He offered to pay two weeks rent but after that he wants to take it to the rental tribunal, breaking the lease based on medical necessity and hardship.

So I’m stuck in this mouldy house, which I’m grateful for, and at times, happy here. But as soon as it rains or there’s damp weather (Oh! With woodsmoke also), I suffer greatly. One thing I’ve been doing differently is the kale juice, which I can hardly believe I’m doing. Possibly because I’m not; my carer does it. I just drink it.

Daily vitamin: kale and apple juice with turmeric and ginger. #kale #juice #dailyvitamin #thrivingplantbased @bananablondie108 #vegan

A photo posted by Michellina (@michellinaoutofthelabyrinth) on

I’ve just done an ERMI with the Mould Lab, also a seperate post worth publishing at the Labyrinth

And I’m finding hanging out over at the new build okay so long as it’s dry. Kind of like a big tree house; one that we need, must keep dry but well ventilated.

Yeah, so we need a bricky in the Bellarine, Surf Coast Area. As ours quit. We have a new bricky ready to go in 2 weeks.

Mould Lab for mould testing of furnishings so you don’t take mould with you. Only if you are extremely sensitive to it, which I am. So I know I’m already ditching a lot of stuff. But I am using evidence based methods to make the decision. This time!

I’m using an Ausclimate Dehumidifier to dry the air in this place. I also bought at DeLongi (for the rental. Yes. It reeks of carpet fumes and fragrance!) However, we are still using it in the room with the old water damage to the ceiling, which I can’t allow our landlord to fix while I’m living here. I’m reluctant to look for a new place. I cannot describe the pain an anguish living with mould illness except to say:

It’s like you’re meditating, doing yoga, relaxed thoughts, and a cloud descends over you. Your chest feels heavy. And then you realise it’s mould. Your energy is zapped by mould. It’s insidiously cruel with your short-term memory. You wouldn’t want to be around people you can’t trust. Or people who’re not kind, actually.

The good news. CIRS has a treatment but you have to move out of WDB first. So there’s that again.

You can read more, here: Surviving Mould DownUnder

The NeuroQuant element of the MRI, which is done at Cortechs Laboratories in the US

And was done at Imaging Associates at Box Hill, Victoria, Australia

And the wonderful Toxic Mould Australia Support Group here

The Latest (June 2016): Ready to Cure CIRS: A Low-Amylose Diet

Michellina Van Loder is a Professional Writer, Journalist and Blogger. This is where she shares her tales about trail blazing her way out of the Labyrinth of Chemical Sensitivities and Mould. This is also where you will find the latest Research on related topics.

New Rental and Throwing Stuff Out

Impulsively, I went online, looking for a rental, my mould-induced-scatterbrained thoughts: just a rolling tumbleweeds in the moment. The area I’m building in is made up of a hundred or so houses; the likelihood of finding a suitable rental there is made up of the odds: 1 to nothing. It took one year to find the rental I’m in now (on the opposite, busy end of town). And usually, its’s old non-renovated beach shack at max. However, the outside air is clean when my neighbours are not spraying, burning (illegally) and mowing. The traffic is low, even in the terrorist tourist season because there are no shops on my new side of town. Alas, there’s a beach and a marine national park, which just means fishing to some. Even if our oceans are suffering. Who cares, he’?! I do.

The side of town, I’m on now is right near the bay; during weekends, the sunnier it is, the more I’m locked inside with the noise of the two InovaAir filters being the soundtrack to my life. I don’t care. Air-conditioned days are my friend because VOCs cannot outgass. I get the most writing done, sitting in bed, on those days. My dog, Bella, is not impressed (even though she’s off the prozac!); but as Bubba say’s: “What can I do?”

Borrow money. Move to a new rental. Feel it: Exciting, the idea that mould is the only thing making me sick, holding me back from living a life that goes beyond YouTube where I hang out with real people with real faces, not just words typed into a message. The liberation of excitement, hope: An idea I’ve had before when I moved here into WDB no.2 back in 2013: at first. while I cleaned the house, I slept in the wild: my idea of that anyway. Maybe I bought the mould with me; maybe the water damaged ceiling that leaked about a year ago did it. It had already been fixed when I moved in; only to leak again. The owners, gracefully, replaced the roof but the chipboard ceiling remained. It’s only now that I’ve been told I have all the markings of CIRS that I look up at the ceiling and see the water stains do look bigger indeed.

So I’m on the move again. If the next place is a WDB, just shoot me now. Twice, just too make sure.

I’m sick enough to warrant that. I have to try (to live without mould (not get shot, LOL!)). (Have I blogged about how I’m on oxygen? and was told by a doctor that I appear to have CIRS from living in a water damaged building (WDB)?  X 2. Two WDBs. If I move somewhere else, I can have some time and a mould-free area to try and remediate some of my possessions before moving into the build, which if it goes mouldy, I most likely, can’t move out of because I will owe the bank half of half a million dollars.

UPDATE on the build: our bricky cancelled. Am trying to find a new one. We are supposed to be at lock up stage due to the fact that it’s Autumn and it’s that time of year where outdoor moulds are prevalent.

So, for the third time, I will easily give my possessions to charity. All soft furnishings. Mattresses. Maybe electrical. I will gladly, gracefully give all or most of my stuff the St Kilda Gatehouse. (If the Swiffer testing shows that I need to. I didn’t do mould testing last time, just went off of my symptoms and followed some mould protocol I picked from people’s brains in some forums I belong to on the internet. “Mould is not your only problem,” said my Allergist.)

St kilda Gatehouse; a place in my heart. I’ve been giving to this worthy charity since 2010 when I read this book, Red Light Dark Room: sex, lives and stereotypes, a coffee table book fraught with images of the girls, women, boys, men and family that make up St Kilda’s sex industry street workers.

I enjoy giving my hard-to-part-with things to these people.

St Kilda Gatehouse is a safe haven that St Kilda street sex workers and those with life controlling addictions experience as “their place”. Some of the support offered is:

* Community space
* Advocacy and referrals
* Counselling
* Emergency aid
* Prison and hospital visits

St Kilda Gatehouse
 is made up of professionally trained staff and volunteers who work alongside the communities and individuals who access the Centre. Together they use basic, creative and inventive ways to address the issues that confront street sex workers and those with life controlling addictions.

In Novel 2010, at Victoria University (VU) I wrote about the sex industry for a couple of subjects. Mostly from a social justice angle but also a fictitious one. I only wrote about this topic in my fiction classes, where graciously, I was given the freedom and space to write about what I wanted to write about: the sex industry. I workshopped my chapters with the whole class and was never given anything but professional feedback on my work. I’m so proud of those classes I took at St Albans, VU!

Thanks, again to any of my classmates that read this xo

At the end of one of my Fiction classes (Fiction 2, I think?), I asked for donations of clothes, particularly items for babies, old lipsticks!, make-up not used, personal care products (Yeah, I know dear Canaries, I had so much to give :) )

I ended up with a whole car load! I took some garbage bags to school that night so I could cover the stuff with them because of the washing powder. I mean, think about this: I am chemically sensitive and can’t have anyone in my class wear fragrance products, yet here I am asking for them so we can all collectively donate to St Kilda Gatehouse. It was heartening to know my novel’s character touched their writers’ hearts enough to want to give.

It was in this class that one pregnant person said to me, I’ve changed their lives. They would only use organic clean products after meeting me. I explained how organic is not the concern so much as fragrance and the use of products containing chemical-irritants.

Wish I had a list. Everyone bangs on about toxins, but unless it’s biotoxins from mould, chemical-irritants are what harms us. “Toxin” is a weak, vague word! Chemical-Irritants are what’s in luxury fragrances.

When I gave away my possessions due to fragrance ‘allergy’ and after the 2 mouldy houses, I put a note on my charity bags not to give to any families who have asthma or health conditions. People are on the streets who need warm clothing. But I don’t want their health getting touched by mould. Certainly not in the way I’ve been touched. It’s the worse thing. Well not the worse thing that can happen to these people who need our help:

I wrote and article, ‘She’s Someone: A Peaceful Gathering to Honour Tracey‘; sadly, shockingly, wrongly, she was murdered at St Kilda. Her killer was never found. That’s the worse thing that can happen…


I am doing testing this time via a place I found via here. I can’t spend my life washing and sniffing things to see if they’re clean yet; and I can’t keep asking others, like my carer, to do it for me. I only have cold water to wash with so can’t give all my stuff a good hot wash. Besides, I did that last time at the WDB (Water Damaged Building) I lived in before this one.) I can’t, WON’T part with my books, which are the worst offenders for mustiness. I love the smell of an old book; but my body won’t tolerate the chemicals (yet): ink better than mould though. I’ve replaced a lot of my old books with newer version because they had the perfume I use to use all over them.)


I packed half my books in these plastic containers Dan bought on the weekend. Four more boxes and all my books will be safe! To keep; not read. When I get better I will read them.

But yeah, I’m looking for a way out. We found a new rental. So not only am I building a house, I am renting another house as a chemically sensitive person, which involves a lot of cleaning up of other renters fragrances. All the fragrance that is in previously rented houses doesn’t always wash away but sometimes, and less, more than often, the fragrance comes off and we’ve found a suitable place to live where we won’t get headaches and amplified chronic illness. Like I hope I have.

This new house has carpet. But I felt better as soon as I walked in. There are a lot of tiles. And the areas that are tiled are closed off from the rest of the house’s carpet. It hasn’t been lived in for a while, always a bonus. And has air-conditioning, which I need on a lot of the time. The Australian Government gives me a rebate for this over the summer period because it’s on 24/7. Yes, I get cold.

I can’t be this sick for such a long time: it’s almost, at times, unbearable. (The times when friends and family are not on your side with the fragrances issue; that’s what makes it unbearable. How can I go to a University and be accommodated but not by people who say they love me? Dan? Bubba?)  Now it “appears that I have CIRS” and that I may have physical proof and a disease code to back up my illness, I’m even more chuffed that all I have to do is a few more tests, an MRI (last Thursday)

and move away from the mould so I can get my Macrons tested and take binders to rid my body of the biotoxins (I am told). No wonder I feel so sick. I’m lucky if I have 1 or 2 days a week where I’m well enough to chase up, follow up and decide on house products and issues. I’m lucky I have oxygen as it allows my brain to function at full flight. In bed, writing all day: there are benefits!

Possessions are not the only thing to count unless that’s all you have. If you have no family and you have the nicest clothes you can afford, and live alone and get to write all the time, that sounds good to me. Throwing out your beautiful clothes, not so good,

(I am washing with cold water in the machine we bought over from the other WDB. We keep it outside but not having hot water is bad because I can’t wash mould out. We do use a hell of a lot of vinegar, FF soap and bicarbonate of soda. Once we move into the new house we will have to buy a new machine. I can’t believe there is no government rebate or assistance for mould impacted people, or chemically sensitive people. Neighbour sprays something en masse into your home while your windows are open, too bad. Life as you know it could be over. Unless you’re like, the Australian Prime Minister or something… )

This is the third time I will have to throw stuff out depending on the test results of the mould testing and the species.

The first time I threw out everything was because of the fragrance that was on all my stuff via perfumes, washing powders, everything with fragrance in it, which was everything I owned: and this was back in 2002-3-4. It took sometime. I still have old photos that have my old fragrances on them, which are now scanned. Sometimes, I sniff them so I can go back and remember, feel, almost ‘be’ back in that time of my life.

I got sucked in by Unilever’s smarmy and sexist and misogynistic advertising. I wore Blue Illusion Impulse Body spray for years. I carried it as a weapon in my bag in case I needed to spray it in a guy’s eyes. It says ‘CAUTION’ on the bottle. Oh, and I used it at age 15 to cover the bong smell in my bedroom, one time. I didn’t stop using it as a deodorant until I was 33 and got sick from ‘Inhalant Allergies’ aka ‘just discriminate against me now’ and aka ‘go live a housebound life’. And back when I gave away all my possessions in 2003 when a big truck came to take them away, I cried. I cried as I sat down at the table and threw out most of my photo albums. I’ve kept around 100 photos from my youth, early 20’s and 30’s.

I suppose I grew up that day: material possessions are nothing. If you don’t have your health or your family, you have nothing. 

The first time, I gave all my stuff to another charity called The Salvation Army, who’d helped me out one time. I didn’t know the Gatehouse existed. I just hope my stuff went to a house with children who didn’t have respiratory illness impacted on by mould. You know, chemically sensitive children. Or children with MCS. Or worse, MCS and Electro hypersensitivity. Being marginalised and on the lower-socioeconomic scale and having a controversial illness is like a triple whammy.

I can only imagine the type of discrimination and exclusion they face on a day to day.

You know, there are people in our world who say that MCS doesn’t exist and that we’re mad? The media ignore us. The Australian  NICNAS review made MCS it’s claim to fame (I mean they didn’t use IEI, did they?), but just didn’t follow up with any awareness programs or anything that could make our lives easier.

“A consistent finding from a number of Australian and overseas studies has been the need for further research. Following public consultation, including with MCS interest groups in Australia, a review report entitled A Scientific Review of Multiple Chemical Sensitivity: Identifying Key Research Needs was published in November 2010…”

And we face the repercussions of that judgement and exclusion from the medical system via ‘No Disease Code’ in a huge way. Nearly all of us people with ‘MCS’ have lost family members and friends due to the systemic use and abuse of personal care products containing fragrances. Perfumes. Aftershaves. Lynx or Axe, depending on what side of the globe you are on–but still made by UNILEVER or some other corporation or company that refuses to use the products on IFRAs list of fragrance ingredients (See, they’re not hiding anything from consumers; just breaking up families and causing a lot of work for Disability Discrimination Legal Services (DDLS)). They could choose ingredients that are not chemical-irritants, sold on to the masses via the latest ‘luxury’ fragrance.

No one wants to stink, including me. I shower each day and I’m pretty sure I don’t smell bad. But everyone else, the whole world it seems, has fragrance on them. And I don’t fit in anymore.

Finding a rental is fraught with difficulty. Yet the first day I looked online I found a place that is carpeted with wool carpet upstairs and tiled downstairs and, get this, it’s one street away from our build so I won’t have to drive my car, which has a water leak in it. Dr Little says Aspergillus is growing under the carpet. He also says, “Mould is not your only problem.”

Anyone want to but a 98′ wagon suburb for 4k? Contact me: Skype Miche1239 (Mouldies don’t apply.)


Donate your warm jackets: The St Kilda Gatehouse

Buy the Book: Red Light Dark Room: Sex, Lives and Stereotypes

My ‘Weekend Notes’ article on Tracey Conelly: She’s Someone

My blog post on drops that worked: Pullaria Mould

The machines that are the soundtrack to my life: InovaAir Purifiers

MouldLab: ERMI sampling to show the levels of mould, which will determine if I keep my possessions or not

Michellina Van Loder is a Professional Writer, Journalist and Blogger. This is where she shares her tales about trail blazing her way out of the Labyrinth of Chemical Sensitivities and Mould. This is also where you will find the latest Research on related topics.

Information, products and views presented by guest bloggers @The Labyrinth are not necessarily the same as those held by this blog's author, Michellina van Loder. Reviews are my own personal opinions (unless stated otherwise); and satire is used throughout personal posts. Any health topics discussed are not to be taken as medical advice. Seek out medical attention if needed and do your own research; however, you're welcome to use mine as a start.
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