(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:
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:
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:
#boxhill #NeuroQuaunt #imagingassociates Had an #MRI of my #brain 2 days ago at Box Hill Imaging Associates who are the only imaging place that does the NeuroQuant MRI in Melbourne. #DrRichieShoemaker developed this imaging technique that shows inflammation, #CIRS and #edema related to cognitive mould symptoms. The clinician went fragrance-free and it was a very relaxing 25 minutes where I had to keep still. #chemicalsensitivity #fragrance-free #accesstobuildings
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.
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!
Mould testing kit from MouldLab arrived today. I think it cost around $325 plus postage. #mould #mouldkit #cirs #mcs #me Will do a concrete blog post with the exact cost ASAP. Will also publish results too. Feel lightheaded not sure on the actual cost but will update soon) #movingon #wdb #waterdamagedbuilding
A photo posted by Michellina (@michellinaoutofthelabyrinth) on
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