Archives for July 2016

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.

Cars in Australia and the US: Is the New Car Smell Bad for your Health?

Of course we all remember the article, a little while back now, about how: Dr Geoffrey Evens Suffers with MCS-like Symptoms with New Cars? Evens, the Research Scientist who bought a new car that set of his formaldehyde allergy he picked up while working in a laboratory for years. Well, the gist of this story is long-winded, something that’s not going away fast, for many of us.

In ‘How toxic is your new car?‘ by Building Biologist and author of Healthy Home Healthy Family, Nicole Bijlsma, answers to some of our questions are put forward:

Ever wondered what that new car smell was doing to your health?

Well if you drive a Honda Civic or CR-Z or Toyota Prius you can breathe easy as they were rated the healthiest. If however you recently purchased a Mitsubishi Outlander or Chrysler (family cars) consider wearing a respirator and tyvek suit – they were the worst. A study conducted by consumer advocate HealthyStuff.org (US) investigated the pollution in cars. There are over 275 different chemicals in the interiors of new cars many of which are associated with birth defects, impaired learning, liver toxicity and cancer (HealthyStuff.org, 2012). Cars were assessed for a variety of toxins including PVC (hormone disrupting chemical), heavy metals such as lead (behavioural disorders) and cadmium (carcinogenic) and brominated flame retardants.

You can Read more here

In Is the New Car Smell Bad for your Health?, written by Jim Travers and published by BBC Autos, the article is ripe with helpful information for consumers:

“There are over 200 chemical compounds found in vehicles,” he said. “Since these chemicals are not regulated, consumers have no way of knowing the dangers they face.”

Since these chemicals are not regulated, consumers have no way of knowing the dangers they face. 

Just reading a list of the substances is scary enough, and makes your car’s interior sound like a hazmat hall of fame. Benzene, toluene, formaldehyde, and heavy metals are all part of the mix. And the danger of exposure is scarier still. Immediate symptoms can range from a sore throat to headaches, dizziness, allergic reactions and nausea, depending on the sensitivity of an individual.

For people already sensitive to formaldehyde and other chemicals, choosing a car can be difficult, especially if the fragrance used in most 2nd hand cars puts many of them out of reach. However, there is great news from BBC Auto when it comes to buying new cars:

Automakers we spoke with, including Fiat/ChryslerFordGeneral Motors and Honda all say they’ve taken steps to reduce VOC levels in their vehicles, along with other substances of concern (SOCs). They say they’ve accomplished this primarily by using different materials, coatings and adhesives in manufacturing, and all say they are continuing to look for ways to reduce the use of potentially harmful substances in their cars.

One known carcinogen that seems to be on the way out is polyvinyl chloride (PVC), which the Ecology Center found was used in virtually all new car interiors in 2006. By 2012, that number was down to 73%. Manufacturers say PVC use continues to decline, and Honda, for one, claims to have eliminated it entirely from interiors of most models.

Other companies like Ford are trying out alternatives like soy padding used in the seats. However, while Australia and the US lag behind the European Union’s REACH program (Registration, Evaluation, Authorization, and restriction of CHemical substances), designed to protect consumers from harmful chemical irritants, allergens and toxic chemicals, the BBC suggests:

” … the best thing that buyers can do to limit exposure is to keep car interiors well ventilated, especially during the first six months of ownership. Park in the shade with the windows open when it’s safe to do so, or at least try to air it out before getting inside — especially on hot days.

Avoid sitting in the car while it is parked, and use a windshield solar shade to minimize heat buildup. The Ecology Center also advises frequent passes with a microfiber towel and a non-toxic cleaner, especially when a vehicle is new. “Chemicals like to hang out in the dust,” said Gearhart.

And for those who are especially sensitive to chemicals, he suggests making an extended sit behind the wheel part of the test drive, to see if symptoms or irritation start to develop.

“Spend time in the vehicle before purchasing it,” said Gearhart. “Or even consider buying a used car.”

More

The New Ecology Center guide to toxic chemicals in cars helps consumers avoid a major source of indoor air pollution. Honda rated the best again due to reductions in PVCs.

Nicole Bijlsma: How Toxic is Your Car

Jim Travers, BBC Autos: Is the New Car Smell Bad for your Health?

This report contains vehicle screening as well as historic test results for nearly 1,000 vehicles: 2011/2012 Guide to New Vehicles

In the US: SaferCar.gov is the NHTSA site where you can identify and report problems you might be having with your vehicle, tires, equipment or car seats

The New Ecology Center guide to toxic chemicals in cars helps consumers avoid a major source of indoor air pollution

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.

New Research Paper by Nicole Bijlsma ~ Environmental Chemical Assessment in Clinical Practice: Unveiling the Elephant in the Room

Building Biologist and author of Healthy Home Healthy Family, Nicole Bijlsma has published the following paper titled,    ‘Environmental Chemical Assessment in Clinical Practice: Unveiling the Elephant in the Room‘, it discusses ways in which the link between human health and environmental exposure can be managed. It’s an exciting way forward for people who are sensitive to chemicals or suffering ill health because of their housing. This paper will make it easier for clinicians to assist families and people who need it by helping them understand the link and consequences in environmental health and building biology.

Furthermore:

There is also a need for concerted action at all levels, including actions by individual patients, clinicians, medical educators, regulators, government and non-government organisations, corporations and the wider civil society, to understand the “exposome” and minimise the extent of toxic exposures on current and future generations

The full document has been shared under the Creative Commons act.

Download (PDF, 391KB)

This is an open access article distributed under the Creative Commons Attribution License (CC BY) which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

More also available on NCBI (The National Center for Biotechnology Information): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772201/

And on MDPI: http://www.mdpi.com/1660-4601/13/2/181

More from Nicole Bijlsma

Her Website: Home page

Building Biology: Articles by BiJlsma

Her thoughts on Mould!

Media

Videos

Abode healthy home cleaning products

Advance Diploma of Building Biology

Mould Testing Course

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 »