The Way Out: Supps, More Testing and Diagnostic Proof of CIRS (Mould Illness)

The potential harmful effects of exposure to molds in inhabited buildings were recognized in early Biblical times. In the Old Testament ~ King James Version, Oxford 1888 Edition, Chapter XIV: Verses through to 34 to 37

Dr Mark Donohoe

I recently saw one of the most famous MCS Doctors in Australia, Dr Mark Donohoe, expecting to get a diagnosis of MCS. But, low and behold, to my surprise I was given one of CIRS almost on the spot, instead. Also of note about this doctor, he’s very ‘conventional-medicine like’ when it comes to my diagnosis and treatments: Plenty of pharmaceuticals, the NeuroQuant MRI plus research to back it all up was provided. On the flip side he lived up to the ACNEM reputation and has me on such high does of probiotics, that, thankfully, are working out quite well and I’m very grateful for.

However, I had to stop the probiotics for 4 weeks before this last Bioscreen test, which caused all my digestive symptoms to come back. The good thing about that painful situation is that it proves the probiotics are working. I can even get away with Kettle Salt and Vinegar chips; I find this amazing! Gluten containing foods, no.

One test I’m waiting on is the non Celiac gluten sensitivity gene test, HLA DRB1 and HLA-DQ (“coeliac”) genotyping, which goes with the CIRS. I used to be able to eat gluten until 2012 when I live in 1st WDB.

I already know I have the HLA-DQA2 in my MTHFR.net results (from 23andMe) and two other HLAs but in case you haven’t realised it, you need a science degree to work this stuff out. The following makes a great read if you feel like getting off to sleep. HLA DQ is not necessarily good if you have breast implants and that gene. Makes me wonder if CIRS. Mould illness, can’t impact on those. I also have HLA B27, also not good with breast implants for those with an auto-immune disease, which I don’t have.

Ankylosing spondylitis is another auto-immune disease related to HLA-B27. 9 out of 10 people who have it have HLA-B27, which still doesn’t mean you’ll get that just because you have that gene, however, related family have a much higher likelihood of developing ankylosing spondylitis. More from Breast Implant Support.com:

“Some notable autoimmune diseases that have a strong association with HLA antigens include Hashimoto’s thyroiditis (an autoimmune disorder involving underproduction by the thyroid gland) associated with HLA-DR5; Graves’ disease (an autoimmune disorder associated with overproduction by the thyroid gland), associated with HLA-B8 and Dw3; and hereditary hemochromatosis (excess iron stores), associated with HLA-A3, B7, and B14.”

There goes the booby operation I was getting done next week :)

Plus I have nasal swab tests in for MaCRONS, and a sinus cavity test for MaCRONS to perform (myself) on Monday. Hope to film that and share it here, providing all goes well. Doing this test: a swab on a wire is placed into my sinus cavity for more, deeper samples.

Other Testing that’s Now In

  • FBE + CRP

General pathology

  • Lyme serology and Western Blot if positive
  • Babesia on blood film
  • Bartonella serology

Infection

  • Erlichia and Rickettsia serology and PCR
  • Anaplasma serology

Hormones

  • VIP (vasoactive intestinal polypeptide)
  • This may only be available from certain specialist pathologists, such as Nutripath in Melbourne
  • AM Cortisol + ACTH
  • Aldosterone

Waiting excitedly to get these back!

Also doing the prebiotics based of veggies each day.

Plus, still going strong the Micheal Ash protocol, more prebiotics, where green apples are cooked up (I skip the cinnamon) and raisins are supposed to be added; I’ve finally been able to find a brand with no or little yeast on them (either that or I tolerate them now); this makes them non-reactive once cooked. No prickling rashes on my face after eating them. For the second part I have to add in blueberries and almonds.

This will get my gut ready for the onslaught of medicines needed to rid my body of CIRS, pray.

I’m still doing the low-amylose diet, however, until I’m out of a mouldy house, 2, sometimes 3 of the foods on the list are in my diet: I eat a vegan whole foods diet and rice and sweet potato have been sustaining me for a while. It just wasn’t doable hence the binging on chips!

Besides zinc and b12 shots, I take only one supplement from Dr. Donohoe: NAC (This supports the Glutathione Nasal spray I’ve been making myself–at $45 a month, it’s just too much to pay out (it’s just buffered glutathione mixed with saline water in a sterilised Fess bottle).

Although, I’m thinking of doing liposomal vitamin C in high doses once I can get the ingredients together.

DSC04125 copy

My original source came from Custom Medicine at $45 a pop

“Do I have MCS?”

A question I was asking myself a few months back when it was first suggested, then later confirmed via the MRI that I have CIRS. Obviously, in Australia, I don’t have MCS unless I am using DDLS (Disability Discrimination Legal Service), which, at times, seems like a never ending pastime.

I don’t have MCS unless I am reminding people of my right to Access to Goods and Services under the Australian Human Rights act (Often this is to a pathology laboratory, or medical service of some kind: Allopathic and natural.) None of my medical documentation states that I have MCS.

I don’t use the term MCS at Victoria University when accessing Victoria University Disability Services (VUDS); nor does the label appear on my documentation of the awesome ‘Access Plan’ that gets drawn up by VUDS.

I don’t call it that with my General Practitioner; yet, I’ve had one ENT specialist say that people who are sensitive to chemicals and believe they have MCS actually have a Psychogenic Illness—like that myth needs to be perpetuated by the Australian medical community (And, I didn’t even mention MCS because my medical documentation and I don’t say it? Gee, it will be great if I actually do only have CIRS cause I’ll recover and can get on with my life, away from such nonsense in a very small-minded part of mainstream medicine, in Australia (while remaining an MCS advocate, of course).

All, apart from the new documents that say CIRS, most of my medical documentation says I have “Inhalant Allergies to chemicals including mould, fragrance, diesel, car exhaust, hydrocarbons, terpenes and woodsmoke”, at levels not normally associated with illness within the general population. However, recently, I have been living in a water damaged building (WDB) and have suffered headaches, breathing pain and lethargy that have left me bedridden. Because my treating specialist has been away, I went for help the only place I could find it (besides my GP who could only give me pharmaceuticals), Dr. Mark Donohoe, who said my symptoms where indicative of CIRS. I’m so glad he was right.

So, I won’t know if I have MCS, sorry, Inhalant Allergies, until after the treatment, which just happens to be the Shoemaker protocol (links at the end). What I do know, however, and it cannot be disputed within the medical and science community is that solvents cross the blood brain barrier (BBB), making it easier for the mould to impact my brain, hence the swelling areas.

More on this from this group teaching session on CIRS:

“CIRS Diagnosis – Recent Developments : NeuroQuant  Inflammation can affect blood brain barrier  NeuroQuant takes particular images from non- contrast brain MRI and measures volumes of 11 different paired structures in the brain  Effects seen on NeuroQuant can point to mole (aka WDB) and/or Lyme effects on specific brain tissue  Interstitial edema (swelling) in some areas  Atrophy (shrinking) of other areas”

My headaches are called: “brain swelling/ microvascular cerebral edema in CIRS“. They often last for two weeks. It used to be a 3-4 day thing after going to uni or a doctor’s appointment. Always caused by a long car trip and/or busy traffic. Now, I know my car has mould because I rarely go in there, yet when I do, mildew is all I can smell but it’s the petrol that hits me. Never did I think mould could be the precursor to that. This car is also from the last WDB I lived in. Now, a car trip can have me laid up for two weeks. Beyond comprehension when I’m going through that pain.

And the mould highest of the water damaged building (WDB) moulds in my rental right now: Wallemia, which scored a 30. I don’t have permission as yet from Mould Lab to share my report so won’t be including this for now.

After the MRI with a NeuroQuant assessment that had to be sent to the the US at Cortech Labs, which you can see on this page, the numbers had to be punched in to get the diagnostic cause: Mould, Lyme-like Illness (in Australia) and PTSD showed up on my brain via atrophy and edema (shrinkage and swelling).

Dr. Turtle in Mosmon, NSW, was kind enough to do this as I could not access a doctor’s surgery where they did this type of thing at that time due to the nature of my chemical sensitivities. (I’ve since found out where you can go and who you can see to access CIRS trained doctors in Australia. However, I feel blessed with the doctors I have as they are familiar with the Shoemaker Protocol and CIRS testing and the challenges faced by people with MCS or MCS-like symptoms.)

Below is the documentation that proves my diagnosis. As a blogger and writer sharing my story, I feel the need to share as proof and as public education for a few reasons:

The least: In light of the Belle Gibson/Irresponsible-non-fact-checking media scandal, which goes to show that not all health stories shared on the internet are factual, ergo, I can prove mine is. (For those who don’t know, Gibson is/was an Australian App designer, a one-time author (of a cookbook), and someone who faked her brain cancer for reasons unknown; meanwhile, the media ran with the judicious story that eating vegetables cured her of cancer. So simplistic; so stupid. Completely. Lol, not really lol but we all love a good story right? Even at the expense of other cancer patients’ health and lives? Surely not!)

The most: To help others who are struggling with complex symptoms and unable to find help

And to share my own story about my travels out of the Labyrinth of Chemical Sensitivities and now, CIRS as way of giving back to all who help me, even in the smallest way.

And, to prove I have MCS! Just kidding… (Hey, Australian Government: Hurry up with some support from the findings of the 2010 review into MCS, you did, like 7 years ago. People are suffering, like, right now… You can’t just publish a fact sheet stating that Australian people have MCS while those same people who have MCS and other illness related to chemical illness (that have actual disease codes!) are unable to access care due to fragrances and a lack of education among the community and medical community, some of whom even laugh in our faces… Case in point: Look at me; I’ve been suffering with medically-tested for and medically-proven inhalant allergies to chemicals for 14 years. 10 of those years were productive enough to leave the house and go to Uni. The last year or so, I’ve been completely housebound. Luckily, I’ve had great medical care all the way through; and only ever saw 2 doctors who proved to be misguided in their opinions, they bandied ‘Psychogenic, and Depressive theories’  about without even checking their facts or any patient documentation.

While on that topic, another fantastic specialist said to me: “You just can’t make that claim about a collective group of people; it could be made on a case by case basis only. I’m already 12-cat-lady crazy so this claim means nothing to me! It really bothers me that someone suffering could be told this, to their detriment!

This is my latest diagnostic documentation:

GDE Error: Unsupported File Type (jpg)

Whether I have CIRS only, or MCS and CIRS is besides the point: I am sensitive to chemicals. I have a part-time carer. I need access to medical care. I want to go back to school. And there are no commonly known guidelines nor education around this issue when it comes to public education, or medical for that matter, which means we are left like sitting ducks but instead of being shot at we are often excluded from life, safe homes and even Government assistance, in many cases unless we do the educating ourselves. In my case, I’ve been lucky enough to attend school as some of you know. Other elements can be really crappy though:

Family members often think it’s about the ‘smell’ of chemicals, rather than the chemical-irritants proven to be allergenic to some, that is the problem here. I believe in taking showers but using a mass amount of chemicals to ‘smell clean’ baffles me.

And, as far as MCS goes, myths are perpetuated, which leads to assisting anti-vaxers and purveyors of snake-oil like ‘cures’ to use us as examples; while some of us cannot even get vaccinated and cannot afford the snake oil.

You, Australian Government, leave us vulnerable at every turn, while the unscrupulous try to sell us this cure and that cure.

People in the science community argue about us like we don’t exist.

You also leave us vulnerable to certain behaviours of ‘doctors’ and bloggers to make fun of us and our doctors; yet, you have the MCS fact sheet for us. For what? So members of my community can suffer, sometimes even reaching the point of suicide? No safe housing options. People living in their cars, on balconies and in their bathrooms. Vulnerable. Disabled. No policies in place to protect us.

While the same myths are regurgitated and vomited into the blogosphere and the collective minds of family, friends and people who have the power to help us. Myths that cause genuine harm:

The Australian Government leave patients sensitive to chemicals open to ridicule on the internet and in real life

By not recognising MCS, the Australian Government leave patients sensitive to chemicals open to ridicule on the internet and in real life

Kozlovich then goes on to list the same set of links used since 1980 to debunk an illness many people experience:

Multiple Chemical Sensitivity: A Spurious Diagnosis
Multiple Chemical Sensitivity Syndrome, American Family Physician, September 1, 1998
Smearing Cosmetics
Senseless Scent Patrol
Scents and Senselessness 
Sick of It All 
Nocebo Effect: Think Sick and You’ll Be Sick
NEW SYNDROME? OR MORE SILLINESS?

Yawn…

But the people who are sick from MCS, they don’t matter do they? Do they NICNAS? Dear, Australian Government? Well, we do have Tammy Franks from The Greens on our side. She has our back!

'Science Based Medicine' blog: People who make fun of us

The above is from “‘Science” Based Medicine‘ blog: More people who make fun of us

Maybe I don’t have MCS or maybe I do; but however this turns out for me I will always be an MCS (and related conditions) advocate and news service, here at The Labyrinth and finding our way out! How about you? Do you advocate for people with MCS, CIRS or other illness related to chemical sensitivity as a symptom?

More on Getting Help for CIRS

NeuroQuant Cortech Labs

Toxic Mould Support Australia

Surviving Mould Down Under

Surviving Mould Website

Access CIRS trained doctors in Australia

Getting Help for MCS

Human Rights: Access to Goods and Services

AESSRA

ANRES

Amelia Hill EI/MCS Resources and Support Page

Australian Doctor’s List

Interviews, and MaCRONS Testing

Self Hacked: CIRS

Dr. Ritchie Shoemaker: Pioneer in CIRS, Mold & Biotoxins; with Guest Host Dana Howell

Test for MaCRONS (Biotoxins living in Sinus and Nasal Cavity)

Media! and Blogger Scandal in Australia

One side: Mad as Belle: the media’s lost accountability

Other side: Belle Gibson, Amanda Rootsey, Jess Ainscough and others fight cancer with ‘wellness’

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.

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.

‘No Jab; No Play’ Liberal Fiasco

(Full bias disclosure: the author of this post is Pro-Vaccination: Due to herd immunity, I believe it’s important to vaccinate as many people as possible. I’m also old enough to remember Polio: I’m grateful that it was wiped out as quick as it was. And (as further proof, purely to prevent the throwing of tomatoes) when I went overseas to Thailand in 2010, even though I am sensitive to a variety of chemicals and had already lived 7 years with immune dysfunction due to mould allergies, solvents and fragrance induced Inhalant Allergies to various chemical-irritants, I chose to get vaccinated. I didn’t get sick from the vaccination or a disease.

Faced with the same choice now, given what is going on with my body, I’d choose to give the vaccination and the overseas holiday a miss, for now. However, if my children or someone else close to me asked me to get vaccinated for Whooping Cough to protect their child, I’d do it in the blink of an eye.

Also, in the 4 years since writing this personal blog about the trials and tribulations of living a life while sensitive to various chemical-irritants, I’ve avoided doing any posts on the topic of vaccination so far for two reasons:

1), Due to Autism in my immediate family: it’s a touchy subject, having a child who is on the Autism Spectrum: the talents, the quirks, the attention to detail and the child herself were gifts to me. I was insulted by the idea of a highly intelligent child being viewed as a scientific mistake, a slight to human and compassionate nature. Yet, curiously, if given $20 for every ‘my-child-has-high-functioning-Autism conversation’ I ever had where I was asked: “Did you vaccinate?”, I’d have enough to replace all my non-vegan shoes! (I really wish life worked like that.)

2), I was once shamed (well, not really, I chose to feel that emotion as well as confusion) because I said in a post: “… in my opinion, all people should get vaccinated.” Due to having the symptoms and illness that would be called Multiple Chemical Sensitivity (MCS) if I lived in Germany or Japan, but instead, in Australia under my own helpful specialist, an Allergist and Immunologist, is called Inhalant Allergies to chemical-irritants instead. I was told by one dearly respected reader, on no uncertain terms, that well, apparently, I, being a person with chemical sensitivities, really should know better!

I can’t get into a discussion about Vaccination; yet it’s the Elephant in the Room when you have a small percentage of Australian people, like 2.9% in just NSW alone, one study says; and:

Prevalence in Australia: In a New South Wales Adult Health Survey in 2002, 2.9% of respondents reported having been medically diagnosed with chemical sensitivity and 24.6% of respondents reported “sensitivity to chemical odours”. In the studies in South Australia in 2002 and 2004 (Fitzgerald, 2008) 0.9% reported a medical diagnosis of MCS with more females than males reporting diagnosis. This is commonly observed in people with MCS, that they are predominately women – not unlike that observed with ME/CFS and FM. There were no differences in reporting between urban and rural environments.

So that’s why I’m writing this post, I support my friends and readers who chose not to vaccinate for medical reasons. I mean you can still choose to vaccinate even if given medical advice not to, can’t you? Will I lose Part A Tax Benefit for my theoretical child if I chose to vaccinate when advised not to?

After hearing about the Governments, ‘No Jab; No Play‘ Policy, which I think is unfair on my theoretical child because I am at the lower-socioeconomic end of the scale, at this time in my life: I find that just the freedom of choice being taken away by financial penalty abhorrent and classist. The policy makes no sense for a country that has a problem with some of the population having chemical sensitivities, yet the Government wonder why people who are in the Chemical Caution Community–as opposed to people who are a subsection of the Chemical Sensitivity Community–who don’t or can’t vaccinate because of fear. Can’t or won’t. Choice. Being forced to do something to your child knowing via maternal instinct and illness patterns that it’s not right!

There’s no logical discussion.

I call bullshit: kids have to cope with this ‘penalty’ if their parents decide not to vaccinate them. The kids will be discriminated against. No Jab; No Play. Like they have a choice and must be punished for choosing the wrong one?! Come on, now?

I don’t advise for people to research on the internet too much, there’s a lot of stuff out there that’s just wrong, say on Pinterest. Quick, ban it now!

And then I saw this:

Screen Shot 2016-03-16 at 3.16.45 AM(attribution.)

And I’m like WTF?

Is it like only the vaccines made by Sanofi Pasteur Inc, and they apparently contain Thimerosal (a Mercury based preservative). Australian vaccines do not have Thimerosal in any vaccines for patients under 5 years (http://www.nps.org.au/medicines/immune-system/vaccines-and-immunisation/for-individuals/questions-and-answers-about-vaccines/mercury-thiomersal-in-vaccines-for-children)

I also know that, with medical advice you can get the vaccine over a period of months while having each vaccine in singular form; so no triple antigen? I’m not sure. This is not advice. But I was sure this solved the issue for my theoretical child, but apparently not.

Sick children do not have to get vaccinated. I know this? Don’t I?

Thankfully, as a chemically sensitive woman I don’t have to make the decision to vaccinate my theoretical child.

Here’s more from

Under the ‘No Jab, No Play‘ legislation, before enrolling a child, early childhood services must first obtain evidence that the child is:

  • fully immunised for their age OR 
  • on a vaccination catch-up program OR
  • unable to be fully immunised for medical reasons.

‘Conscientious objection’ is not an exemption under the ‘No Jab No Play’ legislation.

Too bad if you have the MTHFR genes. A 23andMe Test submitted to Genetic Genie will show if you have this. It doesn’t show if the gene is mutated:

MTHFR stands for methylene-tetrahydrofolate reductase.

It is an enzyme that converts folate you eat into the active form (5-Methyltetrahydrofolate).

You can see from the pathway below that the folate you eat (DHF – dihyrofolate) has to be converted via many steps to the active folate 5-MTHFR.

The MTHFR enzyme affects this at the last step. So if you have a mutation in the gene then its going to be affecting how much active folate you have available.

There are currently a total of 34 mutations in the MTHFR gene. The MTHFR gene sits on Chromosome 1. The two variants tested (or if for cheapskates like me, (and for only $100 AU)) are found within the 23andMe test, are:

MTHFR C677T

MTHFR A1298C

Heterozygous  = 1 copy of the gene from either parent
Homozygous  = 1 copy of the gene from each parent

MTHFR C677T Heterozygous = 40% loss of function *
MTHFR C677T Homozygous =  70% loss of function *

MTHFR A1298C Heterozygous = 20% loss of function (research not known)
MTHFR A1298C Homozygous  = between 50-70%

MTHFR C677T & MTHFR A1298C heterozygous = compound heterozygous = 50% loss of function

*Sources here & here 

The Methylation Cycle

The Methylation Cycle

However, the link between Autism and Vaccines was disproved because the results were fudged, as I remember it. As a parent, I was off the hook in that regards. However, evidence now suggests the MTHFR deficiency has been found to be related to the development of autism because, in summary from MTHFR Support.com.au:

… scientific study and evidence show that smallpox vaccination is strongly related to adverse events in healthy adults carrying MTHFR SNP rs1801133. In addition, folic acid as a maternal supplement increases autism onset rate possibly due to its effect of increasing survival rate of newborns with MTHFR deficiency. Furthermore, there is not enough evidence supporting the reports of MMR vaccination causing autism, but it is hypothesised that a vaccine component of thimerosal or ethyl mercury may be related to autism in early childhood vaccinations. Finally, there is no currently scientific evidence showing the triple relationship between MTHFR, autism and vaccination; but there are ongoing online discussions guided by known medical doctors and healthcare experts to help parents to better understand current research and information about these topics.

But there is no evidence so far that vaccines cause autism; nor is there a link between having 2 sets of the genes (one from each of both parents) Homozygous MTHFR mutations, autism and vaccinations.

A few months ago, after spitting my saliva into a lab tube for a complete DNA test, submitting it to the 23andMe test: I had my very own personal DNA assessed for the methylenetetrahydrofolate reductase (MTHFR) deficiency gene: I have one Heterozygous MTHFR gene from one parent (I am adopted so I will never know from which parent, nor do I need to know, however, 23andMe, in regards to family history can only test a female for the maternal side of her genes) (for the father’s, they need to be submitted and linked to the female, just so you know.) All this means to me is that I’m only 20%? at risk of not being able to methylate chemicals, including heavy metals. (Note: just because a person has both sets of of the genes from both parents, making them Homozygous, it doesn’t mean they will get sick unless there is an illness, virus, poisoning or some event within the body that activates it; hence the latest Autism theory.)

It’s not a good enough reason to vaccinate in my opinion, but still, you need to be able to have the choice in regards to medical illness. The rest is a grey area, I don’t know.

23andMe is a surprisingly cheap way of testing your genes for cancer, every disease that’s been mapped. However,  you can pay $75 for a test for each MTHFR gene to your local Pathology clinic and this test is not covered under Medicare, as yet. Or you can do it with a Naturapath and claim on Private Health Insurance if you have it.

This is an area that needs more research. Australia has one of the highest incidences of allergies; this includes inhalant allergies to chemical-irritants such as fragrance and mould. Only two of the irritants known to disrupt the immune system. Add the MTHFR mutation into the equation, it’s of my opinion that this needs to be looked into further. And don’t start with the peanut allergies. Less green spaces; more allergies. Simple immunology.

But how could anyone not miss the debate in the media over the last few years? That Dori woman annoyed the crap out of me speaking about children getting Autism like it was some fatal disease. Once again, the analysis of the vaccination debate stopped right there. However, right now, I have have friends who have children with the same immune disorders as me, and they are being forced to vaccinate their kids purely because of their income bracket. Yet, I have doctors and other medical practitioners whom I’ve seen in the past who have personally told me they would never vaccinate their kids. I mean, how irresponsible of them; right? Yet, people in South Yarra and Brighton (the upper socioeconomic areas in Victoria, Australia) and the parents in Mosman and Potts Point (the upper socioeconomic areas in NSW, Australia), don’t have to vaccinate their children and they won’t be penalised; so I guess doctors and politicians can afford to not vaccinate their kids!

I really hope someone in a University somewhere in Australia is able to access records and assimilate the data relating to vaccination rates and socioeconomic status; for that, purely on a social justice level, I will find interesting.

On a funny note, and in regards to vaccinations and the alleged hypocrisy of politicians, more from the John Rapport’s Blog:

‘We’re talking about Tony Abbott, who just ruled from on high that there are no more exemptions from vaccines in Australia.

No more conscientious objections, no more religious exemptions. Only the rare medical exemption, permitted by a doctor. And suddenly, every family who refuses vaccinations for their children will lose up to $15,000 per year, per child, in federal support money. Every family in Australia is eligible for federal money.

Tony has officially ripped away citizens’ right to choose. Australia is now officially a medical police state.

But…

Back in 2006, Tony was singing a very different tune concerning his own daughters.

On November 9, 2006, news.com.au had the story: “Abbott rules out cancer vaccine for his daughters” (see also theaustralian.com.au “I could be seen as ‘cruel’ on Gardasil: Abbott”)… ‘

… ‘”Tony was saying he wouldn’t have his daughters vaccinated with the HPV shot because there was no national program for it.

That’s like saying, “If the supermarket doesn’t sell cherries, I won’t let my daughters eat them.”’

General Practitioner (GP), Dr Mark Donohoe from Mosmon, an upper socioeconomic area in Sydney, NSW, Australia, speaks at a peaceful rally against the vaccinations situation in Australia, No Jab: No Play.

Oh, so that’s why the Liberals ditched Tony Abbot: 9 years ago, he publicly announced that he would not be getting his two girls vaccinated with the Guardisil Vaccine. The ‘No Jab; No Play’ was not mandated or some such woo ha.

More on Dr Donhoe and this rally in 2015:

Dr Mark Donohue is well regarded expert in integrative medicine and spoke at our peaceful No Jab No Pay ? No Way ! Protest which assembled at Sydney Town Hall on Sunday 21st June 2015.
We are a group of individuals and parents who believe in freedom of choice and the right of all parents to make their families medical choices free from coercion, manipulation and blackmail!Information regarding the Australian Government’s proposals to remove informed consent from vaccines. Support #freedomofchoice in all medical procedures
http://nojabnopaynoway.weebly.com
https://www.facebook.com/nojabnopaynoway

However, having an immune disorder, chemical sensitivities or another illness deemed too dangerous to allow a child to be vaccinated is one thing, but belonging to an anti-vaccination movement (but only for the rich at this time in Australia) based purely on principle and the conviction that all vaccines are dangerous all the time is another thing entirely according to some of  the parents, now ex-members at Voices for Vaccines:

“The fallout from changing my views was pretty extreme. Within two weeks of “coming out” on Facebook about my new stance, I lost over 50 friends. People who had cheered me on and supported me through my home birth, who had told me countless times that I was an awesome mother and an inspiration, just dropped me like we’d never been friends at all. I was removed from groups and blocked by people I didn’t even know. I was accused of being brainwashed and told that my girls were going to get autism and have terrible reactions. It hurt.
I now view the anti-vaccine movement as a sort of cult, where any sort of questioning gets you kicked out, your crunchy card revoked. I was even told I couldn’t call myself a natural mother anymore, because vaccines are too unnatural. That’s fine. I just want to be the best parent I know how to be, and that means always being open to new information and admitting when I’m wrong.”
You can read more posts from Voices for Vaccines, ‘Anti-Vax to Pro-Vax’ here
The only protection for those children and adults who can’t be vaccinated is herd immunity. This only works if the majority of us are vaccinated. Yes, the Liberal Government are going about this all wrong. Conversations need to be had, humans need vaccinations, but not all children. And no child should be punished for being vaccinated or not.

More

Do children’s vaccines contain mercury (thiomersal)?

Test your Own Personal DNA: 23andMe

Find your Mutations: Genetic Genie Will Read Your DNA Results

About the Australian Childhood Immunisation Register:
See each vaccine to see what the contraindications (reasons for medical exemption) are: http://www.immunise.health.gov.au/internet/immunise/publishing.nsf/Content/Handbook10-home~handbook10part4
(This post has been updated)

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.
Translate »