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.

The Letter from my Treating Allergist and Immunologist in Regards to Building a Safe Home

This is a copy of my doctor’s letter written specifically for my situation so that I can get help from tradespeople and product manufactures while building a home safe enough for me to live in without getting sick from the materials and products used in its construction; I also have to avoid mould, which means I am building a house that won’t go mouldy.

I have huge medical issues with solvents, which impact on my health, making it impossible for me to be near them for any length of time. For marketing purposes and the book I’m writing, Freedom: An Allergy-Free, Eco-Friendly Home, it’s just like I am writing and researching all the ideas and possible products that could be used so that other people, too, can build a home that suits their particular allergy and chemical sensitivity needs. This could include skin allergies, inhalant allergies, asthma or any other condition that has ‘chemical sensitivity’ as a symptom, including CIRS and mould Illness. In reality, however, I am building a house that has to meet the requirements of MY many allergies and chemical sensitivities, the worst being mould, solvents and fragrances.

I won’t be able to live in a house that has solvents, fragrances or mould in it. I will be homeless if I don’t get this house right. I WILL get this house to the standard I need. I WILL do what it takes to do that.

This is the letter here:

img108

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.

Diet Review

Diet Review 2016  (In 2015 a reader asked me to post a particular page after my last post so here they are.): You can read the post ‘Torture and Freedom’ from when I was first struggling with digesting my food, chronic indigestion, stomach aches, rashes, swollen lips and all that. I wish I knew then:

Keep it basic; keep food simple.

Rob Loblay once said something about chemical sensitivities being all diet related. In the aspect of the elimination of food intolerances, he’s right–in my case. But the list of foods I’ve become intolerant to has grown since I lost my health while living in that mouldy house in 2012. Apart from an egg allergy aged 12, and the chemical sensitivities diagnosed as inhalant allergies to solvents and mould since 2003, I never had food issues until I starting losing tolerance to chemicals again in 2012.

The following 13 page food sensitivities record, below in Google Docs, is the map I used to get my diet to suit my food personal food intolerances. A proper elimination diet should only be done under the care of a doctor. I could not have done otherwise because I didn’t have a bloody clue.

For people reading quickly and for health reasons only, the last page is of paramount importance. Go back to basics (ignore the coffee part, I did–no, not for the elimination diet!) and use sweet potato for your sauce bases. I did and still do.

Thankfully, my diet is back on track and I can make varied choices about what I eat again.

However, it’s still pretty basic compared to most standards.

I can use maple syrup if I keep it in the fridge (mould), honey (it’s beegan!), just about any fruit so long as it’s fresh. I have brown rice in my diet; the first grain I’ve been able to digest in 4 years. I’m in a happy place, food wise. (Grrr… except for the pesky the mould/mildew issue on food if not fresh or if it’s allowed to sweat in plastic bags.)

Coffee is bought freshly ground from our organic shop. I can tell you all a little story about coffee blends and freshness another time, but know for now, coffee is back on the menu.

Dulce flakes are being swapped for salt purely as a health choice.

I eat a lot of fruit and cooked veggies and sometimes cook my fruit.

And I don’t not eat any meat out of ethical choice, not dietary. (Note: I added a ‘Vegan’ Column to the diet sheet: so I could explain the exclusion of those groups of meat, fish, chicken, crustaceans. Note in the end of my struggle to eat meat, I could have pork and oysters without getting ill. Never liked pork; the animal itself was lovely though.)

 

I’m actually not vegan; I’m began! I’ve not been eating animals for two years but only one of them was consciously, the other was because of digestion issues: I was and accidental vegan first!

:)

Download (PDF, 16.11MB)

 

How’s your diet going? Any tips you’d like to share?

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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