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:

My-mould-assesment-for-internet

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.

More
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.

How to Avoid Slab Moisture Ingress

Slab moisture ingress can cause indoor mould growth because it not only adds moisture and humidity to the indoor air environment but it can also cause the house to act as a petri dish where mould will grow, spreading spores around the house. This can happen if it hasn’t cured properly, of if there are gardens with soil covering the weep holes—small rectangular spaces left between the bricks at the bottom of the outside wall—where moisture from inside the building envelope can’t escape. Another reason is the slope of the property, rainfall needs to drain away: Don’t expect that ridiculously heavy rainfall will soak into the ground, it needs to run away from the property of into drainage channels.

I found out the consequences of slab moisture ingress at my last residence, before this rental property, when I lived in The House of Mouldy Horrors. (I do have a post in my drafts folder titled, The House of Mouldy Horrors, which is why I have been referencing it in my posts for like, the last two years or is it three now?), on how we (My Daughter and I) managed to remediate this situation including most of our possession kept in the house, including medical assistive devices such as InovaAir Purifiers but due to the stress or ustress (stress you use to create action), that I’m under, I’d rather not think about that right now. I have a mould-free house to build; or rather, lay in bed an write about it. I’ve not been there since I became chronically ill from a bunch of things at the house.)

(Just a note to new readers: my health went from good to bad in The House of Mouldy Horrors, and I suffered painful symptoms that were the beginning of chronic illness on top of chronic illness, I now react to outdoor moulds as well. I’m trying to get on top of this; and I’m trying to build a safer, mould-free home, where I WILL recover. Right now though, I can smell damp soil all the time because I live in a draughty beach-house. One doctor, recently diagnosed me with “what appears to be CIRS (Chronic Inflammatory Response Syndrome) caused by mould” illness. Another doctor, my main Allergist, says I do indeed get sick from mould but he also says, “It’s not your only problem.”, meaning inhalant allergies to other chemicals other than mould.)

Damp patch of concrete causing humidity and mould in the house efflorescence (a build up of a white coloured powdery substance)

The inside part of the house’s slab edge during wet winter months

Damp patch after drying out (before vacuum) with salt powder efflorescence (a build up of a white coloured powdery substance)

The inside part of the house’s slab edge during dry summer months

The white patches are efflorescence (a build up of a (harmless) white coloured powdery substance). The three rooms, all bedrooms, that had these wet patches in the concrete, coming from the slab edges that ran parallel with the outdoor gardens originally had carpet in them. When I moved into this house, the owner removed the carpets due to my allergies; ergo, if we hadn’t of done this it may have taken longer for the concrete leak to become apparent. I imagine the carpet would have taken on a mildewy odour–but not before the mycotoxins (the chemical in mould) outgassed into the air making me ill. Instead, each time it rained heavily, the house took on the odour of damp soil. And then I got sicker. It was inconvenient to pack up and move but necessary.

Those photos were taken in the main bedroom where I slept for the first year in that house; it had a garden bed and a tap on the outside of the house, running parallel to my to the room.

As a precaution, for the Build an Eco-Friendly, Allergy-Free House project, we’ve particularly asked our plumber, Kale from KLM Plumbing not to install any taps near the edge of the house anywhere near the slab edges.

We’re also not putting any garden beds or grassy areas around the house. In fact, we’re using more high-energy-embodied concrete to put a pathway around the whole house. (And, so that we can conserve energy within the building via our slab [thermal], we’ll add insulation between the house slab and the concrete path. But more on this later.)

The majority of houses incorporating wellconstructed and well-detailed concrete slabs and footings experience no problems with slab edge dampness. Where problems do occur, there may be one or more of several causes. A thorough investigation is required to determine the most appropriate course of action to rectify the problem. Most slab edges are occasionally damp due to rain, garden watering or by contact with the ground. In some cases this dampness is able to permeate from the outside to the inside and affect the internal walls and/or finishes such as the floor coverings. Preventative measures are far more effective than facing the often difficult and costly repairs required to remedy problems caused by slab edge dampness and moisture ingress.

Not to mention the cost of a water damaged building (WDB) to human health!

Download (PDF, 324KB)

Indoor mould caused by dampness and high humidity can impact on medical conditions such as Asthma, Inhalant Allergies, chemical sensitivities, respiratory inflammation, Toxic Encephalopathy, Occupational Asthma, Irritant-associated Vocal Cord Dysfunction, Reactive Airways Dysfunction Syndrome (RADS), Irritant-induced Asthma, Small Airways Disease or Multiple Chemical Sensitivity (MCS).

The initial indication of a problem is usually persistent dampness of the exposed face of the concrete slab/footing, often resulting in associated efflorescence (a build up of a white coloured powdery substance) below the damp-proof course (DPC). There’s your red herring, right there: The DPC may have had lost it’s integrity or may never have been laid properly in the first place.

To fix the above problem, we needed to employ someone to dig out the gardens and pour tar against the slab edges, therefore, sealing them from slab moisture ingress. Due to my sensitivities to petrochemicals, this wasn’t an option. However, had I known before I moved in, it might have been. It was 2010 and my health had recovered from the mysterious chemical sensitivities; but by 2012, my health and level of tolerance for fragrance, petrochemicals and solvents was at ground zero.

To avoid slab moisture ingress:

  • Slope the surrounding soil around your building by 50mm before attempting to lay any paths or garden beds
  • If you suffer symptoms from mould exposure, keep garden beds away from the side of the house
  • When laying concrete around your house, make sure to insulate or better still, water proof the edge of the slab
  • Get professional Arborist before planting large trees to avoid tree roots blocking outlets to storm water drains
  • Avoid over watering adjacent to slab footings and edges
  • Have your plumber install unground pipes that drain water away from your home, which is what KLM Plumbing are doing for us

More

Toxipedia: Dangers in our Home, Mould and More

Build an Eco-Friendly, Allergy-Free House: D&C Fear Concreting

Build an Eco-Friendly, Allergy-Free House: KLM Plumbing

Build an Eco-Friendly, Allergy-Free House: Come Shopping with Us at Reece Plumbing

Build an Eco-Friendly, Allergy-Free House: We Wrapped Our House in Plastic

The Labyrinth: DuPont’s Worse Nightmare

Coming up

uPVC windows: Are They the Right Choice For You?

A Hardwood House Frame!

Kingspan Insulation: How we Wrapped our House

 

 

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.

We Wrapped our House in Plastic

Two months ago, where I live on the Surf Coast of Victoria, Australia, we experienced 3 days of wet Melbourne pouring rain, amplified. Not only was I sick from outdoor moulds but I knew the house was getting wet, if not water damaged: We were lucky, After Geelong’s (apparent) one-in-one hundred storm, our house took in water while only at slab, hardwood frame and roof stage. A lot of rain likely went into the slab. Concrete sucks up like a sponge. Luckily it was already cured, which makes a massive difference. After drying it out during a week of lucky, Ganesh-inspired hot weather. We were at the plumbing stage with KLM plumbing, and, thankfully, the house was kept clean of saw dust and other debris by them. After watching the weather over a two week period while the place dried out, we then wrapped the whole building.

Geelong's One-in-One Hundred Storm caused water damage to buildings in many houses

It’s a Wrap

We wrapped the house with Kingspan Aluminium Foil the day before. And, the next day, even though I was sick from the day before, we wrapped the upper half of the Build an Allergy-Free, Eco-Friendly House project in plastic.

We used heavy-duty plastic, the type which is purpose built as a water barrier to go under a concrete slab, I think our carpenter, Damien suggested this. It works. With thousands of staples holding it on to the frame, it’s keeping wet weather out of our house. The bricks will be going up soon, fingers crossed, Ganesha blessed, the Boral bricks will not be any bloody later than this. (Boral Bricks were supposed to be here by xmas so that the bottom half could’ve been finished by now. Alright, let’s not ‘should’ all over ourselves, now shall we?

However, it was an ass of a job: the fumes from the plastic, holding roll after roll near my face and body, during hot weather is not something I’ll ever do again! I have a list of handy tradespeople who I know I can call and find at least one of them to do that job. Actually, Dan did ask our carpenter, Damien from Pristine Carpentry if he would do it but we decided to wait the weather out, wrapping at the perfect time: right before the next rainfall. (It had three weeks to dry out. We tried to wrap a part of it for a few rainy days as well but were yet to develop a technique that was safe. We worked out a way where, with someone else holding the roles from the inside, Dan could hang out on the outside and staple the plastic to the exterior of the house.)

We finished just as rain fell. We copped only a 1 ml of rain. And our house is now protected from water damage. 

I can rest easy now, knowing the house won’t get wet. My Dan has always been my hero but after this effort, he was just so great, as was I for even holding up to it. He took the next day off  work to look after me; and had another day off to take me for a blood test, one that had been previously put on ice, and needed to have two seperate tests run on it from two departments in the same building, it had to be retaken because the laboratories in those two departments wouldn’t run two tests on a singular vial of blood. So off I was to the clinic again: this the day of wrapping with plastic! Just the car visit and the pathology visit would have knocked me flat for the day anyway.

But no, I insist on standing on the upper floor of a building without walls or balcony railings in hot windy heat, drying my eyes and innards and making myself so nauseous, I had to wonder what the Hell we were actually doing out there like that. Him hanging out of windows; me ready to grab him by the back of his shorts.

So glad that day is over. 

Both jobs, the Kingspan Building Wrap (I have a detailed post about this process coming up along with some video footage of the process) and the Plastic Wrap (and a post of this abominable task) wrecking me. It just flattened me into bed for 3 days after. I’ve lost my tolerance and can notice my my health is impacted on via lawnmower fumes and washing powders etc. I just feel more sensitive. My head aches deep inside. However, I know that if I rest in my foil lined palace with the air filters running, this will pass. At least I can type and use my brain, which is always a bloody plus!

The following make great pictures for my up-and-coming book: Freedom: an allergy-free, eco-friendly house. [link to cover on iTunes coming up] but for now, here they are at The Labyrinth blog:

 

The Steps to Building an Eco-Friendly, Allergy-Free house

The Steps to Building an Eco-Friendly, Allergy-Free house and the tradespeople and companies we used (So far we have been really lucky with the team of people who we’ve found to help us build a low-toxic house.):

Design your house. We used Quin Wyatt, eco-Designer, and new beforehand, via testing with a doctor, what to avoid using before hand, plus, and apart from the actual style and design (the look), we knew exactly what we wanted: allergy-wise

Find your workers (yes I have a post: How to Find or Organise Fragrance Free Workers [post coming up]

How to Test Building Products and Products for your own or someone else’s Suitability [post coming up]

How to Apply to Council so that it passes through quickly [post coming up]

A fully, well-cured Concrete Slab, solid as a Rock from D&C Fear Concreting

Low-toxic Pluming installed by a fragrance-free plumbing team: KLM Plumbing

Choosing Fittings for the bathroom, kitchen and laundry: @Reece Plumbing

Choose your internal Building structure: We went with Hardwood from Calco [Post coming up]

Build a frame: we went with Damien and his team from Pristine Carpentry [Post coming up]

Choose a roof style, find a roofer [post coming up] , which are often, but not always a plumbing and roofing job (because plumbers and roofers often do both); We have the maddest Japanese style roof, which we are over the moon about, installed by Yeo Roofing and designed by Quin Wyatt, eco-draftsperson.

Kingspan Building wrap: FOR WRAPPING HOUSES THIS TIME

Virtual House Tour: using Sun Study Designs made by Quin our eco-draftsperson [up-and-coming post]

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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