How I survived CIRS or mould illness while staying in my mouldy house
Large, purpose built Air Oasis machine
Mould illness, or CIRS, can cause serious illness and even lead to death, but with the help of a protocol, gut healing and other lifestyle measures such as managing stress, I’ve managed to go on functioning while remaining in my mouldy house. This is far from ideal, not recommended (especially long term) and everyone is different, but I had little choice.
Key points
My doctor suspected I had Chronic Inflammatory Response Syndrome, CIRS or mould illness, a condition coined by Dr Ritchie Shoemaker involving clusters of multi-system symptoms triggered by a mould and the biotoxins it releases into the air. It occurs mostly in people with a genetic predisposition who can’t launch an effective immune response, often due to gut issues
I had various tests confirming this, including that I have a genetic predisposition
I also had my house tested by a professional who found significant water damage. But it wasn’t viable for me to leave my house. As I waited for my circumstances to change, I hoped to switch off my genes (they’re not necessarily your destiny)
I followed Dr Ritchie Shoemaker’s CIRS protocol. This involved taking the mycotoxin binder Cholestyramine (CSM). I now know that targeted natural binders can also work well if you know what biotoxins are residing in your body, and what detox pathways (we have 6 involved with mould) to support. Now I know there are natural alternatives that don’t have the side effects (it took me months to heal my gallbladder)
I also ate a strict low-histamine and no-amylose diet for 4 months. If I didn’t, I felt significantly worse
I used machines to clear the air in my house: 2 Air Oasis (1 medium, 1 large), a dehumidifier and 4 air purifiers
I began putting oregano oil on my feet each night after trying to take it internally but reacting. After two weeks, I noticed a had more energy and felt better
Healing my gut has been critical to this process. I can’t emphasise how important and central doing this has been for me. This involved giving up gluten and most dairy, getting rid of antibiotic-resistant parasites, treating SIBO twice, eating a gut-healing diet and more
Taking the right supplements has also been important to healing and supporting my gut as well as compensating for the effects of CSM and helping my cells recover
Doing simple yoga breathing regularly outside my house (in a park, for example), has been a powerful tool in reducing the stress mould placed on my body (mould impacts your adrenals) and clearing my lungs, as has daily walking outside in the fresh air
I dealt with psychological/emotional issues at a subconscious level that were slowing my healing
I have refused to identify myself as a ‘mouldy’—for me it’s a temporary condition and not a life sentence
Now, 18 months since my diagnosis, and after living over 2 years in my water-damaged house, I’m significantly better
See my next post here on what I did to heal after leaving the mouldy house some 3 1/2 years after living there
BUT…
Now I know that I could also have done this naturally without the side effects of drugs and antibiotics.
Even though I couldn’t tolerate many supplements during that time, I know now how to calm the immune and nervous systems, and begin detoxification so this becomes possible.
I also understand now how to use food more strategically. For example, some foods mop up mycotoxins 80% as effectively as cholestyramine! And being more strategic about supporting good gut microbiome can enable your own body can detoxify them itself despite genetics.
The details
I’d been working on my health for some time when I was diagnosed with CIRS or mould illness, and over three years had been making significant progress. I’d given up gluten, discovered an eradicated an antibiotic resistant parasite, and received treatment for SIBO (the more problematic methane type). Gradually, I’d been peeling away the layers to rediscover my energy and passion for life, which I though had gone for good and had put down to ageing.
I had also upped my gut-healing protocol, improving my diet even further (I already ate 90% Paleo) by cutting out sugar, eating fermented vegetables daily, eating largely chemical free or organic vegetables and a little fruit, upping pre-biotic resistant starch, eating well-sourced grass-fed animal proteins and organs, taking probiotics and getting plenty of good fats as well as drinking bone broth. I even tried AIP, or an autoimmune protocol.
When I moved to a new old house (built in 1880), and after three weeks of straight rain, my health started to decline. I kept telling myself I was facing small setbacks, as I’d often done before, but there came a point when I realised something was really wrong. I had many tests including stool, blood and heavy metals tests to find the problem, but these gave me no clarity.
After a few months, I began to deteriorate more. I couldn’t breathe, the area around my eyes was bright red (inflammation), my joints were swollen and painful and my thinking was fuzzy. My integrative medicine doctor was going away and said she thought we should look at mould when she got back. She got me to do a visual contrast eye test to see if my brain was mould affected and it came back as a fail, meaning it was. But I still didn’t understand what this meant.
While she was away, I grew worse, feeling that my health was out of control and my life was beginning to slip away. Mould can, and does, kill people. It wasn’t until my doctor returned that she was able to test more specifically and confirm that I had CIRS. While I didn’t opt for the expensive US blood tests or NeuroQuant MRI, local blood tests confirmed that I had a multi-susceptible gene along with typical hormonal and inflammatory responses as well as Marcons along with other indicators. By this time I was desperate as I’d been unable to breathe properly for weeks, and while most people suddenly gain weight with CIRS, I had lost 5 kilos. I felt myself to be literally vanishing.
In the meantime I researched mould and found world expert, Dr Ritchie Shoemaker. I began his protocol while also doing the Mould Illness Made Simple or MIMS course. In addition, I joined a couple of Facebook pages, which were helpful but also stressful in that they were full of horrendous suffering.
This protocol involved taking Cholestyramine or CSM, an old cholesterol-lowering medicine that attaches to biotoxins from fungi, bacteria and dinoflagellates/ciguatera then carries them out of the body; Clinoptilolite zeolite, a mineral clay that binds with heavy metals and histamines; and, charcoal, another potential biotoxin binder. It tried Chlorella too, but I reacted to this as I did everything else except for the CSM. Later I would realise this was because my SIBO had returned. SIBO is known to result in food sensitivities and allergies by causing leaky gut.
A note on taking CSM. I found I needed to increase my intake of water, fibre and fat (I craved butter, perhaps for the Butyric Acid it contains which is good for gut health and anti-inflammatory), take vitamin C (and/or magnesium citrate) and supplement with vitamins A, D, E, K (some people also take CoQ10). I turned yellow when I first started taking it, as others have, but I had a liver test and there was no problem there.
At the same time I also found Australia’s best mould expert, qualified by a Dr Shoemaker-trained doctor, and had my house tested. His report said my house was severely water damaged. The problem was that leaving wasn’t an option for me. This was a huge dilemma, which is something many of us face. For many reasons, including because I’m buying my house, it just wasn’t viable to move. At publication date I’m still waiting for some key things to fall into place before that can happen. So what to do in the meantime?
By now the protocol was now working and my health was beginning to improve. The greatest relief was being able to breathe and think more clearly again. By this time I’d taken a number of other practical measures
I bought a combination of air purifiers, a medium-sized Air Oasis machine that I carried around from room to room and placed by the air purifier to extend its reach (they have small fans) and a dehumidifier for our most damp room, the kitchen
Importantly, I also got sub-floor ventilation put in. It takes around a year to dry the ground out properly, but I noticed a significant improvement immediately. My mother had just died and left me a little money, which I spent on these machines
Around a year later, I spent the rest on a large, purpose-built Air Oasis machine. These machines are critical in my view as they kill, rather than filter out all mould and mycotoxins, even the minute particles that air purifiers won’t. I find I always need to have a window open a little as I don’t like the ozone they give off, which gives me air hunger
In addition, I got rid of some very mouldy items like my books, which broke my heart as I’m a writer, and have had to keep clean some severely mouldy items like my shoes. I also try and wash everything regularly in and borax and vinegar. But I’m not terribly vigilant
My lounge is a problem as my new lounge suite is giving off plenty of VOCs (volatile organic chemicals), so I can’t sit in there for long. Knowing the most toxic areas of your house so you can avoid them is important. Initially, I mostly lived upstairs in my house where the water damage and mould wasn’t as bad
Along the journey other health issues persisted. While I was sure the inflammation from CIRS wasn’t helping anything, and was possibly exacerbating some conditions, I felt there was an underlying issue causing other non-related problems like nerve pain and numbness, which predated the mould.
By this time I was studying Functional Nutritional Therapy and suspected I had SIBO again. I was right, only this time it was the hydrogen kind. SIBO is insidious as it leads to leaky gut, which can cause immune issues and change the environment of your small intestine meaning absorption is compromised, including importantly for me,Vitamin B12. I used targeted antibiotics as I couldn’t take herbs, and they worked. In the meantime I honed my diet further and began putting antioxidant, antibacterial, antifungal and antiviral oregano oil on my feet each night. I discovered this through functional testing, part of my practice where I test supplements against the body using a biofeedback mechanism.
I also had some energetic work done on my allergies, which meant I could eat eggs again and some others foods that I’d had strong reactions to for years such as swelling, air hunger and severe rashes ,and did some work on a subconscious, releasing deeply embedded and outdated beliefs. I know this might sound far fetched but, first, it worked, and second, as physicist Albert Einstein said, we are not matter but energy: ‘Concerning matter, we have been all wrong. What we have called matter is energy, whose vibration has been so lowered as to be perceptible to the senses. There is no matter.’
Since ridding myself of SIBO and doing this energy work, I’m no longer allergic to supplements, which means I can take anti-fungal/microbial herbs to continue healing CIRS and prevent he SIBO from returning a third time. This was also like a switch in terms of my health and sensitivities/allergies. Truly powerful.
Another thing I believe is important to mention is stress. Mould itself impacts your adrenals, causing a chronic stress response. On top of that, if you’re lucky enough to get a CIRS diagnosis rather than separate ones as Western medicine often does, there are many consequences to deal with, like having to move and get rid of most of your possessions and clean the rest. I turned to FaceBook for support, and there was a lot of that for which I’m grateful, but some people’s stories were so devastating they just about broke my heart. As a Functional Nutritional Therapist I’m aware that stress impacts every system in your body and of itself is a major contributor to disease. I decided to bow out of those groups, also because I didn’t want to brand myself as being a mouldy. Instead I turned inwards and did breath work and walked when I was able, and later added in meditation. While my health and life were truly frightening at times, I focussed on what I could do about my situation to take back control and get better.
All in all it’s taken me 5 years to get where I am with my health now. I will never eat gluten again because the wheat we eat is not real, is toxic and causes leaky gut in everyone, it’s just that those people with a balanced gut (which is few of us given our modern diet, stress, antibiotics and lifestyle) heal in a few days while the rest of us need two to three months. And to my best ability I will also always eat whole, real foods that are well sourced and properly prepared, avoid sugar and chemicals, and manage the stresses on my body.
But my main point is that by healing my gut and mind—in other words by taking a holistic approach—I believe I’ve been able to continue to live in my mouldy house while getting rid of much of my CIRS. Yes, I was left with healing work to do once I could finally leave that mouldy house on my immune system, gut, and thyroid, but I wasn’t wrecked and I could keep on functioning.
If your body and mind are in balance, you eat a great diet, and get some help from medicines and supplements, it was possible for me to keep your head above water with mould illness while remaining in a mouldy environment. Genetics have not been, and never will be, my destiny. How about you?
Find out how I healed after finally leaving my mouldy house here.
Written by Nore Hoogstad