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.
“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:
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:
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!
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 Press! 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
Access CIRS trained doctors in Australia
Getting Help for MCS
Human Rights: Access to Goods and Services
Amelia Hill EI/MCS Resources and Support Page
Interviews, and MaCRONS Testing
https://selfhacked.com/2016/03/15/dr-ritchie-shoemaker-pioneer-in-cirs-mold-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’
Why do you think the government have done a backflip on recognising MCS? They started doing good work in SA with the Social Development Committee of the Parliament of South Australia MCS enquiry and the SafeWorkSA/Adelaide Uni’s MCS in the Australian Workplace – Policy Directions, now both documents are very difficult to access and are actively ignored by government departments.
Human rights..my @$$.
Can you supply links and more description please? I’m asking political parties directly on Twitter in relation to MCS. I’ll do a post soon. Thanks for your input : Why has the Australian Government Done a Backflip on MCS? Great, title. Also of note: The Access to buildings, goods and services guidelines recently went missing from human rights website. It’s now available here: https://the-labyrinth.com/2013/01/15/access-to-buildings-and-services/ I need to ask them directly. Sometimes it’s a matter of a new site or organisational system but in our case well worth looking into.
Really interesting, and much food for thought. Thanks.
MCS may turn out to be just a symptom of a high level of toxic substances in the body, such as Mycotoxins (mold), chronic Lyme and co-infections, pesticides, petroleum byproducts, VOCs, solvents, fragrances, etc., an impaired ability to produce liver detox enzymes (either genetic or induced), and adrenal exhaustion or insufficiency, sometimes accompanied by mal-absorption of nutrients and food allergies, sensitivities, and/or intolerances. Remove the body burden of toxins, avoid introducing additional toxins, improve the patients nutritional status, and the patient’s health will improve. This would avoid the use of the term Multiple Chemical Sensitivity as a diagnosis, with all of it’s medical and political baggage. Dr. Claudia Miller uses the term Toxicant Induced Loss of Tolerance, or TILT for short. At first I hated adding yet another name to confuse an already confused medical community, but I do kind of like the term TILT. It was what happened to a pin ball machine (pre-electronic games) when you “nudge” the machine with such violence that it risks damaging the hardware. The machine then shuts down, and the game temporarily stops, and you have to stop playing until the ball is out of play. Then you can start again, if you have any balls left (no pun intended). Sometimes you have put in another quarter and start the game over. Which is pretty much what happens in real life, when you have MCS.
On a serious note, thank you for providing all the documentation, which hopefully will help others receive a correct diagnosis and treatment.
I like TILT, but for some people genetics seems to be more important than an initiating chemical exposure.