Archives for April 2016

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.

Toilets: Game of Thrones Edition

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.

An Allergy-Free, Eco-Friendly Kitchen—By The Allergista: What are Your Countertops Hiding?

Hi! I’m The Allergista!

The Allergist, aka, Jennifer from the blog, The Allergista

The Allergist, aka, Jennifer

In 2010, all of a sudden I was dealing with horrible oozing rashes on my legs and arms. It seemed to keep spreading… and spreading. Medications helped for a day or two and then I’d slide even further downhill. I ended up being diagnosed with a list of allergies (I have 24) and eczema. As opposed to taking harsh oral steroids (Prednisone) for the rest of my life, which the doctors recommended, I decided to avoid my allergens instead. It’s been QUITE the journey. Michellina has so kindly allowed me to talk to you guys because she is AWESOME like that. With her medical condition diagnosed as Inhalant Allergies… she knows what it’s like having to avoid an annoying amount of things. It’s nice to have other people who “get it” because most people don’t understand how much I had to change my lifestyle in order to deal with these issues!

So let’s get on with it, shall we? What I want to share with you today has to do with laminate countertops. Aside from being a poor imposter for wood, I never thought anything bad about them until I discovered what was in them. It all goes back to my eczema… I kept getting a really intense little rash on the underside of my right wrist. This made me think about what my wrist was touching all day and I realized that EXACT SPOT was touching the counter my work computer sat on. Thinking it may be due to cleaning products used on the counter, I started cleaning it with just water… but it didn’t make a difference. My next solution was to tape pieces of laserjet paper to the counter, preventing my wrist from actually touching it. This did the trick! And it proved to me that the actual countertops were what was bothering me…. but why?

I started doing some digging online. I wanted to know what laminate countertops were made of and how they were made… hoping this information would shed some light on what was really going on. As I dug deeper and deeper, it all made sense: cheap laminate countertops are often made with polyester resin. My skin HATES polyester! Any time polyester sits on my skin for more than 5 minutes, my eczema flares up into a mess of itchy red bumps. Not only did I learn that polyester is used in laminate counter tops, but polyester resin is created by propylene glycol reacting with a dibasic or polybasic acid. PG is another one of my allergens… veeeeery interesting! I explained my findings to my dermatologist and she wrote a doctor’s note saying that in order for me to be in a healthy environment, I need to be protected from laminate countertops.

These days, my desk at work is covered in glass which I LOVE. Not having to worry about if I’m touching my desk or having to DIY my way around it is pretty awesome.

Polyester resin doesn’t stop at counter tops, though. Here are some other places you’ll find it:

  • bathtubs
  • boats
  • in construction as an adhesive
  • fiberglass
  • luggage: as adhesive holding on the metal hardware
  • coats
  • outdoor furniture
  • packaging: bonding the plastic and cardboard together in blister packaging
  • underground utility boxes
  • sheet moulding compound
  • automotive panels
  • carbon fiber
  • kevlar

I really wish that there were strict laws around labelling the content of EVERYTHING… not just food. And actually, the laws around ingredient labels on food aren’t that great. I talk more about that here. In the last handful of years, this is just one of the sneaky ways my allergens were messing with me and my eczema. I’ve learned a LOT. In an effort to help you guys out, I sat down and thought of all the different ways my health has been secretly disrupted. I came up with nine! I organized them all into a nice little 2-page PDF which you can download by clicking the glittery button below:

Cheers to taking control and leading a healthier life!

 

XOXO,

Jennifer

 

Click Button to visit The Allergista: 9 things that could secretly be disrupting your health

Click Button to visit The Allergista and download: 9 things that could secretly be disrupting your health

Sources:

MSDS for Propylene Glycol (Polyester): http://msdssearch.dow.com/PublishedLiteratureDOWCOM/dh_006e/0901b8038006e13c.pdf?filepath=propyleneglycol/pdfs/noreg/117-01785.pdf&fromPage=GetDoc

Lyondell: http://www.lyondellbasell.com/techlit/techlit/2412.pdf

Shell ~ propylene product derivatives: http://www.shell.com/chemicals/products-services/our-products/propylene-oxide-derivatives/propylene-glycols/product-overview.html

Polyester Resin: http://en.wikipedia.org/wiki/Polyester_resin

Us Composities ~ Polyesters: http://www.uscomposites.com/polyesters.html

Moulded Fibreglass and Polyester Resins: http://www.moldedfiberglass.com/materials/polyester-resins

eHow Facts on Polyester Resin: http://www.ehow.com/facts_5043005_can-polyester-resin-make.html

PubMed: Systemic contact dermatitis from propylene glycol

PubMed: Contact allergy from propylene glycol

The Kitchen Series

An Allergy-Free, Eco-Friendly Kitchen—Oak. Glass or uPVC or Composite Panels?

 An Allergy-Free, Eco-Friendly Kitchen—By The Allergista: What are Your Countertops Hiding?

An Allergy-Free, Eco-Friendly Kitchen—Ecological Panels, and Building Biology Service, EcoLibria

An Allergy-Free, Eco-Friendly Kitchen—uPVC Board

An Allergy-Free, Eco-Friendly Kitchen—Benchtops

An Allergy-Free, Eco-Friendly Kitchen ~ A Recap on the Low Irritant Kitchen

Hi, I'm Jennifer, and I sometimes guestblog over here at the Labyrinth!
Back in 2010, I was diagnosed with a long list of allergies, eczema, lactose intolerance and vitamin D deficiency. It was a complete lifestyle change... and in the beginning, it was hard. Endless hours were spent doing research and the more I learned, the more my skin and health improved. I want to share that valuable information with all of you who are dealing with the same struggles! If you'd like to read more, visit my blog, The Allergista!

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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