The video for this podcast can be viewed on YouTube here.

Is mould making you sick? Could it be the cause of your “mystery autoimmune disease”? Well it was for me, and some experts estimate that 20% of the population could be struggling with mould toxicity and not even realise it. I recently figured out mould was the cause of my chronic illness I've struggled with for the past four years and I’m currently on an extensive treatment plan. If you’re new here I have a degree in science and enjoy doing research on topics and reporting them. In this report I am going through my personal story including how I figured out it was mould, and then I'm going to go into the science behind it. I explain what is mould toxicity and CIRS, what are the symptoms, how to get diagnosed with mould toxicity, how to treat it with the shoemaker protocol and how to test your home for mould. I also have a chapter on CIRS and how to treat that. At the end I talk about how experts and Jordan Peterson are calling it the asbestos of our generation, the link I found between autism and mould, and Dr. Neil Nathan's approach of rebooting and some FAQ. This is quite a detailed report so I have chapter markers for each of these sections so feel free to skip ahead, but I was searching the net high and low for this information. All references can be found on my blog which I'll put in the description.

Personal Story

In June 2020 I moved into a small unit in Torquay that was built in the 70s. There was no sign of mould in this house. Towards the end of this year I started to develop some pretty significant health issues. I was bedridden with migraines and flu-like symptoms a lot of the time and when I wasn't when I would leave the house I would get a flare up of symptoms and have to go home. I stopped being able to work, exercise, go on road trips with my parents. I was constantly seeing doctors and specialists, constantly doing tests which showed evidence that I was highly inflamed. The doctors told me I had some kind of 'mystery auto-immune disease' but they didn’t know what it was so in 2021 they diagnosed me with chronic fatigue. I was so scared during this time - I had no idea what was making me sick and I felt like I was wasting my youth away. The doctors really had no idea and sometimes I had to wait six months to see them so this was the first time I saw the flaws in Australia's medical system. Even though I am grateful that it is better than other parts of the world (which I am not ignorant to because I've lived in third world countries) I still think it can be better. The endocrinologist I was seeing actually made a comment suggesting that I was lying about my fatigue, but he was built like the man from the minions, and that was the day that I vowed to myself that I would never take health advice from a person who didn’t look healthy. I also had a constant candida problem and I was always thirsty and felt dehydrated, even though I drank so much water. At this time I also went through a very severe depression. Like very, very severe - I couldn't get up off the floor. I remember one time I was walking from the lounge to the kitchen and depression just hit me, and I couldn't even make it back to the couch. I laid on the kitchen floor for about 45 minutes.  I did have trauma that I hadn’t dealt with, which I went to therapy for,  but in hindsight I honestly believe the mould amplified my depression by probably ten fold. I look back now and I'm like, imagine killing yourself over mould, but I'm 100% sure many people do. I had read before that depression can be a physiological problem rather than a mental one, and I didn't really believe that too much until I removed myself from the mould and dramatically improved instantly. This is a key sign for me that there is mould that I can't see - when I feel depression for no reason.
Another symptom of mine is really chronic insomnia which I've had since I was 16. I know now that it is a symptom of my autism but it was definitely worse in the mouldy environments and that's another key sign for me now. I also want to mention that during this stage of my health journey medicinal cannabis was one of the only things that would help me with my migraines, which is why I advocate for it. The only other things that felt like they helped at this time were ice baths and breath work.

In June 2021 when I was 28 years old I moved back in with my parents, where I stayed for two years. I got a lot better but it took a long time. I gained like 20kg in this time for no apparent reason, and this is a big sign of mould toxicity. Mycotoxins will affect leptin, which is the hormone responsible for your hunger cues, causing people to eat more than they normally would. The toxins from mould are also fat soluble, and so your body will often create more fat so it has some place to store these toxins away from the system. Also, mould can wreak havoc to your hormones, and correcting this is actually one of the key steps in treatment according to the Shoemaker protocol. This likely caused my PCOS, and anyone who has PCOS knows how much it messes with your weight. 
During this time I was still struggling with depression even though I made leaps and bounds. I tried the lion diet developed by Mikhalia Peterson who, if by some miracle you happen to see this I would love to have you on the podcast, even if its just to thank you. For those who don’t know, the lion diet is the least allergy inducing diet and so many people with autoimmune diseases report putting their conditions completely into remission on this diet. It includes only the meat of ruminant animals, so for six weeks I ate nothing but steak and lamb chops and salt. Nothing else - no oil, no spices, nothing. I literally did everything I could to get better. This diet had a dramatic impact on me. I felt a lot better and for the first time in 5 years my blood tests said no signs of inflammation, which is still interesting to me because I obviously had inflammation from the mould but it must have been reduced so much that it wasn’t in a crazy range anymore. However I still had fatigue, insomnia, and other symptoms that it didn’t fix. Interestingly, a lot of people in the carnivore community now believe they actually have a problem with mould, and the carnivore diet simply reduced their 'bucket of inflammation' so much that it stopped overflowing and this causes a cessation of their symptoms. Judy Cho talks about this and she is someone in the scene who I really trust to evaluate and report the science while keeping an open mind enough to continuously update her opinion when new evidence is presented. Judy if you happen to read this, I would absolutely love to have you on the podcast too.
In July 2023 I moved into a new home by myself. The house was originally built in the 70s but was completely renovated and had an extension put on for the master bedroom and ensuite. The house looked beautiful and modern - again there was no sign of mould. In October 2023 I was diagnosed with autism, and learnt many of my symptoms are related to that. The insomnia is common as autistic people are wired to a different circadian rhythm, as is depression, and chronic fatigue. I learnt that a lot of my chronic fatigue is actually autistic burnout. It’s really common for people who autism to have burnout because for us to process one day takes more energy, particularly involving social interactions. But there is definitely a difference between burnout and chronic fatigue and so I want to take a second to explain the difference between them. The best way I can describe burnout is like like having two batteries. There is the 'day-by-day' battery and there is the 'reserve' battery. If I do too much in one day (or use too many spoons) then I take from the reserve battery. But if I don't give myself enough downtime, that reserve battery doesn't re-fill. When it is empty I burnout and it takes me a long time to recover it. Years I'm talking, and some people never recover. It's like you burn that battery out and actually damage it, the battery being your body, so this is why it's important not to push autisms with your expectations for them to perform the way neurotypical people do. Chronic fatigue is different because it's more of an inflammatory response. It often comes with flu-like symptoms including migraines. I now know this is mould related for me.
In 2024 a whole new set of symptoms arose that I’ve never had before. A lot of them were really acute issues that in themselves weren't enough to make me go to the doctor but were enough to make me know something was wrong. It was confusing because in some ways I was getting better and in other ways I was getting worse. I now know that different types of mould will give me different symptoms, and so while some of my old symptoms like fatigue were getting better and I could run again, a whole host of new symptoms appeared. I started to developed arthritis during certain periods whenever I ate anything. I did an IgG intolerance test that told me I was only intolerant to three foods that I wasn't eating. My naturopath later figured out it was actually a histamine problem, which is associated with mould. Then I started getting acne I never had before. I had itchy ear canals, ringing in the ears, blurry vision sometimes. I once broke out in a full body rash. I would always get night sweats and wake up with aches and stiffness even though I didn’t work out the day before. I had constant flare ups of eczema. I couldn’t breath through my nose in bed at night - my sinus was always blocked so I became a mouth breather. Then I was diagnosed with PCOS, or polycystic ovarian syndrome. I noticed that my hormones were always fucked. Then I started to notice impaired brain function. I kept loosing my train of thought, I couldn't think of the world I wanted to use and my memory was getting worse. I thought it was because I smoked weed, but I don't smoke that much weed and that never used to happen (this has since stopped since moving into the tent). My insomnia was also shocking. It was pretty common for me to go to bed at midnight and still be laying there wide awake at 8am. Usually it took me 3-4 hours to fall asleep (on a good night) not eight. I was also having really bad bouts of depression, which was confusing because I was in remission for depression. Some days I would have strong suicidal ideation and I had no idea why because nothing was wrong. Then I started to develop a compromised immune system. I used to be the type of person who would get sick maybe once a year. Then it started to be once a month. And by sick I meant I caught whatever was going around and would wiped be out for a week. Then I started getting sick every second week, so one week on, one week off. This is when I finally realised it was mould and since I left that house almost all of these symptoms have gone away.

How I figured I figured out it was mould 

I couldn't see any mould in my house. Intuitively I knew it was something in the air, because my symptoms were worse in some rooms and better in others. I also knew dust had caused my eczema in the past. Turns out dust is highly associated with mould as the mycotoxins attach to dust, which explains why I always go flare-ups at op shops. So I bought an air purifier. Then one day I opened Instagram for one of the first times since taking a long break from it, and the first thing I saw was a post by my friend Janelle Bridges about how she just realised that mould was making her family, and in particular, her son, extremely sick. I can’t explain it, but when I saw that post, it’s like it went straight through me. Something in me was saying, “Hey! Pay attention.” The walls in my bedroom leaked one night during heavy rain, so I started to suspect mould. I bought a moisture meter but all the readings came back 0.0. (I probably bought the wrong one, see 'how to test your home for mould' section for a link to a better one.) The air purifier also said the air was clean, so this was confusing. I kept pushing mould to the back of my mind. Then a week later I was meditating and I said to the Universe, "Please give me guidance for the next few steps ahead for me." The second I said that an image of that instagram post popped into my head. Now shit like that doesn’t happen to me, I’m not a psychic and I know that sounds woo woo as fuck, but honestly if you know you know. Something was telling me to look at mould. I looked very carefully on the walls for mould and I couldn't see it. The hard part about mould is you can’t always see it, and it can make you think you’re paranoid or going crazy. Then, I spotted mould in my ensuite. Tiny spots you couldn’t see unless you were looking for it. And that was it. I was out. I took my cat to my parents house and I never stayed in that house again. I moved into a tent in my parents back where I am still living three months later. I told the real estate, who by law has to send someone within two days. They sent a mould inspector who tested several places including the leaking wall where you couldn't see any mould and they all came back positive. So they said they would send someone to fix it but it would take three weeks. I asked them on the phone several times if the house was safe for me to stay in and they kept saying, "We can't tell you that." So then I asked them to reduce the rent because I couldn't live in the house, which VCAT says they should reduce it but they don't have to by law, and they denied my request. So I broke up with them. According to VCAT, if there is mould detected in the house, you’re allowed to break the lease without any punishment eg. they can’t keep your bond. But they ended up fucking me over anyway by taking $1000 from my bond because of ‘dust on the light fittings’ even though I sent them an invoice for a professional cleaner. Don’t worry about the thousands I have spent on medical bills or the furniture I've had to throw out. To be honest that whole situation really upset me because there's something about when a person disrespects you and gets away with it. I wanted to come on here and name and shame them, but I just want to leave that negative energy in the past and I went through a whole thing about processing resentment which I'm going to talk about in a future podcast. I also had 0 confidence that they would actually remediate the mould seriously. A proper remediation likely would have involved tearing down the walls and cost thousands, and because there are no guidelines in Australia yet, I really doubt they would have done that. So after that I started to focus on getting better. I researched and found two specialist doctors in Australia highly regarded including Dr. Kate Barry, who will be in a future podcast episode. Dr. Barry referred me to get a whole heap of tests done and the results did indeed confirm that I had mould toxicity. I will go into more information about that below. I have been taking prescription medication and have noticed improvements. Because all of this was costing my family so much money, I decided to move to Dr. Anjana's clinic because she works closely with naturopath Adrian Harper, and so seeing a combination of them both helps keep the costs down a lot, but I do intend on returning to Dr. Kate sporadically because I really value her opinion as well. 
I will say that the process of getting better can be hard because a lot of doctors don't know anything about it and so many of them will dismiss it completely. I then started down the rabbit hole with mould toxicity - and everything inside of me went, “Click, click, click, click, click, click, click, click.” I just knew in my heart that's what was making me sick for the past four year, and I was so scared no one was going to take it seriously. Because you often can't see mould, people will think you are paranoid or going crazy. The best thing you can do is see a specialist doctor. They will believe you and tell you what tests to get to confirm it. 

What is Mould Toxicity/CIRS?

Mould (spelt M.O.U.L.D. in UK British English and M.O.L.D. in American English) is a type of fungus that can make toxins called mycotoxins. These mycotoxins can enter our body if we inhale spores into our lungs, absorb the toxins through our skin, or ingest them through contaminated food. For a normal person, once the toxins enter the body their immune system recognises them and creates the antibodies to take the toxins out of the system. However, 25% of the population have a gene that means that their body can't create the antibodies and so the toxins get stuck in the system and circle around and around until you take medication to manually take them out. These are called binders and they manually bind to the toxins so they can be excreted from the body [1]. Instead of creating antibodies he body produces cytokines which set off a profound inflammatory response. This condition is called CIRS - Chronic Inflammation Response syndrome, and this is why if you take a person with mould illness out of the mouldy environment they still remain sick. It's because the mould is still stuck in their body. This is why many people with mould illness often have autoimmune diseases or CFS - the body is stuck in a perpetual inflammatory response that eventually becomes dysregulated.
This kicks off 'The Biotoxin Pathway' as developed by Dr. Shoemaker, the leading doctor and researcher in this field [2]. The flood of cytokines blocks leptin receptors, which, to put short, means that mould toxicity can affect many areas of the body including immune regulation, hormonal balance and brain and nerve function - hence why I have PCOS. The Shoemaker protocol is a treatment plan for treating CIRS and mould toxicity that corrects each of these systems and markers that are disrupted by mould. I go into this in more detail later.
This is also why people suffering from mould have a confusing array of symptoms. Mould illness is considered a multi-system, multi-symptom illness. This means that mould will affect multiple systems in your body (such as the digestive system, respiratory, etc.) and of those systems you can have multiple symptoms (such as abdominal pain, IBS, developing intolerances to food you could once tolerate, etc.) 

Symptoms

As mentioned above, symptoms can be multi-system and multi-symptom. Mould illness can be hard to diagnose because two people living in the same house can have completely different symptoms, making it difficult to pinpoint mould. This is even more exasperated when one person has the gene and the other doesn't, because one person may get chronically sick while the other only gets a blocked sinus, causing them to rule out environment. The following is a list of symptoms commonly experienced with mould toxicity taken from Dr. Jill Crista's book Break The Mold. As you will see there are a lot and each symptom from each category is worth different points that tally to give you an indiction of mould toxicity. For more information visit her website.

Category 1: 

Brain fog, feel tired all the time, frequent runny nose, blow your nose often, sneezing, sinusitis, post-nasal drip, nose bleeds, swollen glands, shortness of breath, frequent yawning or sighing, heart palpitations, headaches, hay fever, eye irritation, blurry vision, frequent change in vision, allergies, dark circles under eyes, sensitivity to sunlight, nervousness/can’t settle, low mood or depressed, feeling overwhelmed, episodic/chronic dry cough, irritated lungs, blood-streaked mucous, nasal polyps, coated tongue, sores in the mouth, bumps on back of throat, thrush, sore or itchy ear canals, ringing in the ears, bothered by loud noises, skin rash, burning or itchy skin, easy bruising, spider veins, bothered by tags and seams on clothing, anemia, protruding veins on limbs, lower extremity edema, clear your throat often, sore throat, frequent colds, delayed recovery from colds, exhausted from exercise, frequent static shocks, increased thirst, trouble sleeping, feeling of internal vibration, dizziness, vertigo, drunken feeling, frequent urination, yeast infection, change in appetite, intestinal gas, nausea, feeling bloated, constipation, crave sweets, crave alcohol.

Category 2:

Wheezing, asthma, burning lungs, recurrent respiratory infections, migraine, allergies aren’t well controlled by medication, voice sounds nasally, plugged or clogged ears, chronic sinusitis, vomiting, alternating constipation/diarrhoea, diarrhoea, irritable bowel, food sensitivities, chemical sensitivities, abnormal reaction to antibiotics, Epstein-Barr virus, recurrent yeast infections, bacterial vaginosis, recurrent athlete’s foot, jock itch, or toenail fungus, peeling/sloughing skin, episodes of fast heart rate, chest pain, Raynaud’s syndrome, non-obstructive sleep apnoea, difficulty thinking clearly, disorientation, balance issues, slow reflexes, incoordination, numbness or tingling, nerve pains, unexplained menstrual changes, overactive bladder, bladder infection, react to musty spaces.

Category 3:

Daily use of sinus spray, sinus prescription, or Neti-pot, sinus surgery at any time in your life, chronic inflammatory response syndrome (CIRS), MARCoNS, peanut allergy, chronic fatigue syndrome, difficulty walking, dysautonomia, postural tachycardia syndrome (PoTS), hearing loss, confusion, dementia, memory loss, tremors, sarcoidosis, asthma that’s difficult to control with medication, idiopathic pneumonitis, lung scarring or nodules, respiratory distress, aspergillosis, arrhythmia, coagulation abnormalities, arteriovenous abnormalities, Churg Strauss syndrome, histamine intolerance, erythema nodosum, eosinophilic esophagitis, ulcer, non-celiac intestinal disease, blood in stool, cyclical vomiting syndrome, liver pain or swelling, fatty liver, non-alcoholic steatohepatitis (NASH), interstitial cystitis, kidney pain or swelling, kidney disease, nephritis, chronic pelvic pain, infertility, hepatocellular carcinoma, previous or current cancer diagnosis, mast cell activation syndrome (MCAS), exposure to water-damaged building any time in your life, exposure to mold, positive Shoemaker tests.

Diagnosing Mould Toxicity

This can be difficult as many doctors are still ignorant when it comes to mould toxicity and some will write it off completely. Because you can't see mould, its easy to think it's all in your head and you're being paranoid. I think everyone with CIRS has been there. But there are tests you can do so just trust the process. I would highly recommend seeing a specialist mould doctor as they will believe you and they will know exactly what to test for and how to treat it. I recommend Dr. Kate Barry and Dr. Anjana in Australia for mould specialists, and in Geelong I recommend Dr. James Webster as a good GP (even though he is not an expert in mould, he is a very supportive and open-minded doctor who may be a great first step).

HLA-DR Gene Test

The first thing I would do is get the HLA-DR gene test (make sure you don’t get the celiac one). 25% of the population has this gene that makes them more susceptible to mould poising. It costs about $200 or can be bulk billed in Australia. Test results usually take ten business days to come back and you may need a specialist to interpret the results. There is a website that allows you to calculate your results in the Australian format and if that fails there is a paper by Shoemaker [2]. The gene can test positive for 'mould susceptible' or 'multi-susceptible', which means you are susceptible to multiple threats including mould, ticks, E-Coli and more. I tested positive for the 'multi susceptible' gene as well as the 'chronic fatigue susceptible' gene which is so interesting because I have CFS but I didn't know that was a thing. 

Mould Allergy

You could also have a mould allergy (IgA) or mould intolerance (IgG) which is detected through a normal blood test and can be bulk billed.

Visual VCS Test

Another test you can online and at home is the Visual VCS test. This test is good because it will give you a good indication immediately and for free. As the mycotoxins from mould can cross the blood-brain barrier, mould affects brain function (explaining the symptoms of memory loss, poor concentration, etc) It also affects contrast visibility, and so almost all people with mould poisoning fail this test. The patient looks at a series of alternating white and black lines, and if they can't see them, this indicates poor retinal function which is closely linked to biotoxicity [1]. It sounds simple, but in the field it is widely accepted. 

Mycotoxin Urine Test

There is some debate about using this test. This test screens for many different types of mycotoxins and can be useful if you need to 'prove' to someone that mould is in your system, such as a landlord or a boss. It costs about $400 through Nutripath in Australia. Some doctors like it because it can show you exactly what types of mould are making you sick so you can target them for treatment (as different types of medication bind best to different types of mould. However, ome doctors don't bother with this test because it is so expensive, they believe this money is better spnend on treatment. The test can also be inaccurate and doesn't screen for every type of mycotoxin. Also, some patients have seriously compromised ability to remove toxins from their bodies, which means the test comes up negative even though it is making them sick. To combat this, Dr. Neil Nathan suggests in his book Toxic that patients should take 500mg of glutathione twice a day for a week leading up to the test and then doing the urine sample 30 minutes after a sauna [1]. Obviously I'm not a doctor so talk to a specialist.

Blood Tests

Dr. Shoemaker suggests testing for the inflammatory markers that usually go array when dealing with mould toxicity, including VIP, MSH, leptin and more [2]. There are other tests that can indicate mould illness, including full blood count, liver function, lipid profile, immune markers and many, many more. You should do this with a specialist doctor.

CIRS

I will use the word 'diagnose' when talking about getting diagnosed with CIRS with inverted commas because you can't technically be diagnosed with CIRS in Australia yet because it is not widely recognised as a formal medical diagnosis by mainstream healthcare systems. However, specialist doctors will likely tell you you have it and continue to treat you for it. The best way to see if you have CIRS is to do the Visual VCS test and look at the clusters of symptoms, which I have inserted below. As mentioned previously, as mould can cause multiple symptoms in multiple systems of the body, if you have symptoms from 8 of the 13 clusters then there is a 95% chance you have CIRS. If you have symptoms AND fail the visual VCS test, there is a 98.5% chance you have CIRS. The different clusters tests to see if you have symptoms from multiple systems. So here are the symptoms from the clusters that are commonly associated with mould illness: 

Cluster 1: fatigue. 
Cluster 2: weakness, decreased assimilation of new knowledge, aches, headache, light sensitivity. 
Cluster 3: memory impairment, decreased word finding.
Cluster 4: difficulty concentrating.
Cluster 5: joint pain, AM stillness, cramps.
Cluster 6: unusual skin sensitivity, tingling.
Cluster 7: shortness of breath, sinus congestion.
Cluster 8: cough, excepssive thirst, confusion.
Cluster 9: Appetite swings, difficulty regulating body temperature, increased urinary frequency.
Cluster 10: red eyes, blurred vision, night sweats, mood swings, ice-pick pain.
Cluster 11: abdominal pain, diarrhoea, numbness.
Cluster 12: tearing of the eyes, disorientation, metallic taste.
Cluster13: static shocks and vertigo [2]. 

If you have symptoms but not some from eight clusters, mould can still be making you sick. Mould can still make you sick if you don't have the gene, you just likely won't get as sick and it won't take you as long to recover. 95% of people with CIRS have the gene. However, there is a small chance that you can have CIRS even if you don’t have the gene. According to Dr. Kate Barry, she has noticed that the 5% who don’t have the gene usually have a high level of MSH. Dr. Kate is an amazing doctor who has agreed to be on a future podcast episode with me.

Treatment for CIRS / Mould Toxicity

Shoemaker Protocol

The Shoemaker Protocol is a medical framework developed by Dr. Ritchie Shoemaker for treating CIRS and mould toxicity. Based in the United States, he began his research after identifying a link between mould exposure and chronic illness in patients and is responsible for progressing the field with publishing several scientific studies on the topic [4, 5, 6, 7, 8, 9, etc]. The protocol focuses on identifying and addressing the root cause of inflammation with a step-by-step process, which I will go through now. Please note not every doctor will follow the protocol exactly and treatment plan will differ per individual. Please also note that the timeframe for healing from mould varies dramatically per person depending on how badly you were exposed and how sensitve you are. The time frame often given is six months - five years and some people report never returning to full health, however it is hard to know if these people were ever truly removed from the mouldy environment. In general CIRS really is treatable with hope of getting your health back eventually. The following information is taken directly from Dr. Shoemakers website, survivingmold.com.

1 - Removal from ongoing exposure

Obviously this means get out of the mouldy environment. This is easier said than done as it can be hard to pinpoint where exactly the mould is coming from. Is it coming from your work, your home or even your car, as the air conditioner filters in cars are often hot spots for mould. It is important to assess buildings for a history of water damage and keep record of when your symptoms started and where they flare up. If it is your home, it can be difficult to leave as some people are locked into lease agreements or can't afford remediation. I moved into a tent in my parents backyard.

2 - Treat with cholestyramine or other binders

The main way to treat mould illness is with binder medication. As mentioned earlier, if you have CIRS your immune system can't remove mycotoxins. It will try to remove them through bile which it releases into the intestines, but will get reabsorbed into your body through the digestive tract. Binders work by binding to the toxin more strongly than the toxin binds to bile, and then it is excreted via the stool. This is hwy it is important to ensure you are maintaining regular bowel movements, as not excreting it can cause toxins to reabsorb into your body. Binders can cause constipation, so this is something to be wary of. 
There are many binders but the best one is a prescription called cholestryramine. It is often used to lower cholesterol but it is considered the best binder because it is a similar size and opposite charge to the toxins causing it to bind really well with it. However, different mycotoxins from the different types of mould bind best with different binders. There are some natural binders such as activated charcoal’s, clay, and I even know someone who even used steamed kale. I use Questran Lite which is still cholestryramine but with different fillers and this version is significantly cheaper than the compound or pure version of cholestryramine. Questran Lite is $44 for a pack of 50 sachets while the compound version is roughly $300. Some sensitive people can't handle the fillers in Questran Lite however and others don't like it because it contains the sweetener aspartame which some speculate is associated with cancer. I’m actually taking a mixture of three binders- cholestryramine, clay and one from CellCore. However, be careful with anything you take as citric acid is often derived from black mould so you have to be careful. I go into much more details about all this on my Tik Tok where I cover pretty much every topic of mould in detail. Some people develop extreme sensitivities to medications including binders due to mould exposure, and so you have to be very careful with your dose. Binders should be taken 30 minutes before meals and 90 minutes before other medication as binders may interfere with the absorption of other materials [1].

Reactions

It is common for people to have really bad symptoms when taking binders. If a reaction appears to be an exacerbation of the patients current symptoms, it indicates that the binder has pulled toxins into the patient's body fast than their compromised detoxification systems can clear them [1]. This is a sign you need to back off. Pushing through DOES NOT make you heal faster. It will actually make you worse.

Detox Pathways

Binding is only half the story. Once the binders pull the toxins out of your system you then have to detox them out of your body. However, the toxins themselves often poison the very systems needed to remove these toxins (such as the lumphatic, kidneys etc) [1]. As a result, it is common for mould patients to have reactions to binders as the medication brings the toxins to the surface but they have no place to go. It is important for patients to optimise these drainage pathways. The best way to do this is to sweat, so exercise is good if tolerated, as is going to the sauna. I go to the sauna 3-5x a week. Other methods include dry brushing and rebound trampolining (which is just jumping on a mini trampoline) as these will stimulate the lymphatic drainage system. I experienced really bad flare ups of chronic fatigue that left me bed ridden worse than it has in years and also severe bouts of depression. I increased my binder dose too quickly because I was impatient. It is also really important to do this with a doctor as it can be quite severe the side effects and getting doses right is such a balancing act. I severly underestimated how hard the binder medication would be on my body. 

3 - Treat MARCoNS

Multiple Antibiotic-Resistant Coagulase Negative Staphylococci are a group of bacteria that can colonise the nasal passages and are often resistant to antibiotic use. They are very common and contribute to a worsening of mould toxicity. They cause an increase in cytokines in the body, worsening the immune response, destroy MSH function and they make thick layers of biofilm which protect the bacteria. The presence of MARCoNS is detected through a nasal swab test which is $200 in Australia through Nutri-Path. I tested positive with a 'severe' overgrowth which explains why I can't breath through one of my nostrals and have to mouth breath at night. My treatment protocol includes saline irrigation daily with a herbal solution and if it is still present after eight weeks I will try antibiotics.

4 - Correct anti-gladin antibodies

The fourth step is correction of antigliadin antibodies. Many, but not most, patients will have a positive antigliadin antibody (AGA) in their initial lab work. When Celiac Disease is ruled out, treatment of patients consists of a gluten-free diet for three months followed by retesting. If the AGA is negative on retesting, gluten can often be reintroduced into the diet without consequences [10].

5 - Correct androgen levels

The fifth step is correction of abnormal androgens typically caused by an up-regulated aromatase enzyme. Treatment may consist of DHEA (dihydroepiandrosterone), HCG (human chorionic gonadotropin) injections (or sublingually) for 5 weeks, or VIP (vasoactive intestinal polypeptide) nasal spray for 30 days.

6 - Correct ADH/osmolality

Step 6 is to correct antidiuretic hormone/osmolality problems. Treatment consists of desmopressin tablets every other night for 10 nights. If you have correction of this quickly, there is no need to continue but many people will need to have daily desmopressin for approximately one month. Osmolality needs to be closely watched.

7 - Correct MMP-9 levels

The seventh step is to correct MMP-9, an inflammatory marker. This treatment entails using omega 3 fatty acids, usually EPA and DHA, in conjunction with a “No Amylose” diet for the same time period.

The No-Amylose Diet was developed by Dr. Shoemaker to help people with mold illness who have high levels of MMP-9. Cutting back on amylose, a carbohydrate found in mainly in starchy foods that grow underground like potatoes, sweet potatoes, peanuts, carrots, plus cereal grains, works to lower MMP-9 levels.

For the Shoemaker Protocol recommended MMP-9 reference ranges, refer to the article on the Surviving Mold site. The reference ranges published through the labs (Quest and LabCorp) now offer a broader range, and we’ve seen significantly different ranges used around the world. The Shoemaker Protocol’s reference range is consistent with the worldwide peer-reviewed published literature and clinical trials’ findings on MMP-9 treatment for CIRS due to WDB exposure or “mold illness.”

8 - Correct VEGF

During this step we follow low VEGF (vascular endothelial growth factor, a signaling protein that promotes the growth of new blood vessels). People won’t have symptomatic improvement if VEGF is below 31. Correcting low VEGF involves the no amylose diet and omega 3’s as before for MMP9 correction.

9 - Correct C3a

Step 9 is the correction of high C3a. High dose statins are used to clear elevated C3a. Co-administration of CoQ10, beginning 10 days before starting the high dose statins will help prevent CoQ10 deficiency secondary to decreased HMG-CoA reductase function.

10 - Correct C4a

This split product of the MBL (mannose binding lectin) pathway of the complement system is a key marker of how severe a patient’s CIRS is. In the past we could use Procrit to correct C4a, but the FDA has put a black box on erythropoietin use. Because it’s not available, we move on to follow the rest of the protocol and VIP.

11 - TGFb1

Step 11 is the correction of TGFB1 (transforming growth factor beta 1), an innate immune cytokine which is also a key marker of illness severity. Reduction begins by treating with Losartan for 30 days in adults. Self-monitoring and low blood pressure should occur daily and with the start of symptoms such as orthostats. As with all other therapies, abnormal labs should be redrawn at the completion of therapy.

12 - VIP

Step 12 is the pinnacle of the pyramid. By this time, most patients will already have become much better with reduction or resolution of at least 75% of their baseline symptoms. Some will require this last effort. The criteria for use of VIP includes a normal blood test for lipase; a negative culture for MARCoNS; a normal HERTSMI-2; and a normal VCS test.

Particularly, if VIP is used to correct multiple gray matter nuclear atrophy see the 2017 paper on VIP on the Surviving Mold site. This use of VIP brings the most hopeful changes to those with cognitive effects and mold exposure.

VIP is not appropriate for patients who still have significant exposures or MARCoNS. It won’t work. As such, a HERTSMI-2 (building index score), plus appropriate labs and testing will be run. These tests will document if the patient’s body has been relatively cleared of toxin, that there is no major exposure and, indirectly, that MSH is moving in the right direction. Passing these tests at this time demonstrates the effectiveness of the previous 11 steps.

How to Test Your Home for Mould

You can't always see mould. In fact, three houses have made me sick and I could not see mould in ANY of them. According to Dr. Shoemaker, there is no one type of house that is more likely to be mouldy than others. While older houses have more time to be water damaged, modern houses aren't always built well. The house that made me sick had a flat roof which resulted in poor drainage. If a house experiences water damage either from a leak, a flood, or other, if it is not dried within 24-48 hours mould will grow. Drying should be done professionally with dehumidifiers.

ERMI Test

The quickest and easiest is to get an ERMI test. The ERMI (Environmental Relative Moldiness Index) test measures the concentration of harmful mould species in dust samples by wiping a cloth over a dusty surface and sending it to a lab. The test helps determine the level of mould contamination in a home. It is relatively cheap and quick, making it a good option for testing potential rentals or home purchases, however it doesn't tell you much more than if mould is present. 

Moisture Meter

According to Jess from Mould Wise (mould inspector who suffered from CIRS), there is a half decent one you can get from Bunnings for $50. Moisture meters can indicate water damage which can lead to mould, however sometimes they are inaccurate and provide only part of the story.

Mould Inspector

Be warned - if you want to get your house tested for mould you have to be very careful in Australia. There are no guidelines and some companies work closely with insurance companies and landlords to say nothing is wrong. Some companies do have the best intentions but if they haven't had CIRS, they honestly don't know how seriouse they need to take it. What is 'fine' for a normal person is not 'fine' for a person with the gene. 
A good inspector will inspect the entire house. They will walk about the perimeter, sus out drainage, ask about the house history, do thermal testing as well as surface samples and air samples. They will take air samples both inside and outside the house and advise you to keep all windows and doors closed for 24 hours prior to testing. The best thing you can do is get a building biologist. Expect to pay anywhere from $1k+ depending on the size of your house. Unfortunately if you have CIRS you don't really have a choice. I know someone who paid a mould inspector $26k to remediate her house only to still be having symptoms, so she hired a building biologist and almost every room in her house came back a 'red zone'. It's not worth cutting corners. For context, when I was looking at getting my parents house tested, an inspector told me insurance should send a hygienist if someone living in the house has the gene, and our insurance actually honoured that. The report came back and said everything was fine, but I was having symptoms, so I sent the report to Jess from Mould Wise to look over for $150 and she said there were a lot of red flags. I contacted MJ from MJ Building Biology who looked over my parents house and she dound several problem areas, including one 'red zone' in the room next to the one I was sleeping in. You can't see any mould on any of the walls in this room.

Renting

If you are renting, report the mould to the real estate. According to VCAT (The Victorian Tribunal which resolves disputes between landlords and renters), in Victoria they have to do something about it within two business days or you can basically sue them for everything (including medical costs, replacing furniture, 25% of your rent from the day you reported, etc). Unfortunately a lot of people don't take this seriously and landlords are hesitant to because remediation can be very expensive. If mould is detected, in Victoria you are allowed to break the lease without any penalties (eg. they can't keep your bond). 

Remediation 

Remediation must be done by a professional. Remediation can involve replacing plaster, scratching mould out of wooden frames and vacuuming mould from areas with professional equipment. This can be very expensive.

Air Conditioners

Air conditioners are a breeding ground for mould and have to be professionally cleaned by a specialist twice a year if you have CIRS. 

Furniture

You also have to throw away a lot of your furniture if you are leaving a mouldy house. I know that is so hard to hear, but so many people speak about contaminating their new home. It depends how porous the furniture is and how sensitive you are too. Wood is bad unless it is sealed and mattresses have to go. I sold all my furniture and I threw away my mattress. I lated discovered even my makeup brushes were mouldy. 

Clothing

If you can visibly see mould on your clothes, you have to throw it. Otherwise you should wash everything four times with different additives each time according to the Shoemaker protocol (for more information on how to treat everything, see Shoemaker's website survivingmold.com. I had to wash every single item of clothing I owned which cost me like $300 at the laundry mat and I ruined one of my favourite jumpers which is the frist time this whole thing really got me down to be honest. 

Dr. Neil Nathan's Approach - 'Rebooting'

This is taken directly from Dr. Neil Nathan’s book, TOXIC [1]. To put simply, when a threat enters our body (e.g. mould) our body sets off the alarm system and gets to dealing with the invader. For example inflammation, cytokine release, changes to mitochondria etc. But Dr. Nathan says that sometimes the body doesn't realised when the threat is removed, and so it stays in a ‘loop’ of fighting a threat that has long gone. He says this is common in people with mould poisoning, and so an essential part of treatment is rebooting the body, particularly the nervous system. He said, “ Because mould toxicity… [has] a propensity to inflame nerve tissues and the brain, they often set off a wide array of unusually neurological symptoms. These include… severe anxiety and/or depression and cognitive impairment.” 

Asbestos of our generation 

We are currently experiencing an epidemic of chronic illness in our culture; particularly when it comes to autoimmune diseases. It's a real possibility that we are all suffering from mould illness and we don’t even realise. Many people, including Jordan Peterson who has explored this on his podcast episode with Dr. Shoemaker and Dr. Mahon, have called mould ‘the asbestos of our generation.’ That is, that we are living in extremely dangerous housing without even realising. They estimate that if 25% of the population have this gene, and an estimated 30-80% of buildings have water damage, then it is possible that 20% of the population could be sick from mould right now. This can range from sever autoimmune diseases to the aches and pains you thought came with 'getting old'. This actually gave me so much hope because I always say we need a revolution of healing - heal yourself, heal the world - and I think physical healing is synonymous with spiritual healing. And so I have extreme hope that over the next 10 years as this becomes more apparent and widespread knowledge that we will have an epidemic of healing in our culture. 

Link to Autism 

It hasn't crossed my awareness that there appears to be a link between autism and mould illness. Many of the symptoms previously mentioned like chronic fatigue, insomnia, depression and anxiety overlap with autism. There are neurological symptoms too, including lack of concentration, increased sensitivity to stimuli including light, slower processing speeds and impulsivity. Mycotoxins affect brain function as they are small enough to cross the blood-brain barrier. Many people who experience mould illness incorrectly get diagnosed with ADHD or even autism. I want to take a moment to say that I personally do not think my autism was caused by mould, but I definitely believe it amplifies my neurodivergent symptoms. I theorise that majority of the autistic population, or perhaps just the female autistic population, may have the HLA-DR gene and have been exposed to mould. I think this could explain the strong link between autistic people and chronic fatigue. I have found several studies [11, 12,] that suggest that people with autism are more susceptible to mould toxicity, so this is one theory as to why. Autism is also linked to inflammation [1] and so I believe this could be a huge part of the puzzle in treating mould.

FAQ

What are you meant to do when you travel?

By the time I travel I will be better, and so my body should be better able to tolerate mould as my bucket of inflammation will be reduced. I will always take binders with me, along with a small HEP air purifier. I think my symptoms will be the first sign there is mould and I will just remove myself from the environment. A moisture meter can be a good way to help assess an environment as well. 

How do you know a house is mouldy when looking to rent/buy?

The best way is to do an ERMI test. The ERMI (Environmental Relative Moldiness Index) test is a tool used to assess mould contamination in indoor environments by measuring the concentration of harmful mould species in dust samples by wiping a cloth over a dusty surface and sending it to a lab. The test compares the presence of specific moulds to a reference database and provide an ERMI score, which helps determine the level of mould contamination in a home. Although it isn't thourough in the information it provides, it is relatively cheap and results can come back in a week, which is obviously useful when applying on the property market.

How long does it take to get better?

It depends on the person. The general timeframe is six months to five years. Most people do get better if they follow the protocol. However, some (very sick) people report never regaining their normal health.

Could you see the mould?

No, not in any of the three houses that made me sick.

Should you change your diet?

Some people avoid sugar as sugar can quote literally feed the mould and bacteria inside your body which is why many people with mould illness get sugar headaches [1]. Dr. Shoemaker recommends a low amylose diet which is found is many carbohydrates particularly for steps 7 and 8, as amylose can increase MMP-9 levels [10]. Some recommended a low histamine diet, as mould toxicity can increase histamine in the body which exasperates symptoms of inflammation, and some doctors will recommend you avoid foods high in mycotoxins. These include beer, mushrooms, sauerkraut - foods that are fermented or have bacteria can be problematic. Depends on the person, their symptoms and their test results.

What were your symptoms of mould illness?

Different types of mould will give me different symptoms. The following are all diagnosed conditions.
House one: chronic fatigue syndrome, migraines, brain fog, insomnia, severe depression, yeast infection. 
House two: eczema, acne, arthritis, rash, itchy ear canals, ringing in the ears, blurry vision, blocked sinus, loss of memory, decreased word recall, compromised immune system, insomnia, suicidal ideation, fatigue (but not as bad).
Third house: same as second but less intense. 
Please note everyone will experience different symptoms, even two people living in the same house. 

Is CIRS or mould illness associated with any other conditions?

Yes, there are other conditions that are closely linked to mould illness or the HLA-DR gene. These include: Lyme disease, fibromyalgia, chronic fatigue syndrome CFS, multiple chemical sensitivity MCM, chronic inflammatory response syndrome CIRS, Ehlers-Danlos syndrome, POTS, PANS, Hashimoto's disease, postural orthostatic tachycardia syndrome, mast cell activation syndrome, Sjögren's syndrome and more.

Conclusion

After four years of living with chronic illness, I just accepted I was always going to be a little bit sick. I made peace with that, and learnt to look on the bright side of life. To discover the cause of my illness and have hope of recovering feels like the greatest blessing of my life. I am so grateful and I will never take my health for granted again. I don't need motivation to go for a run now - being able to exercise is.a privilege, one I was robbed from for years. One thing I heard a doctor in the field say that really stuck with me was, "People say autoimmune diseases are when your immune system is attacking itself. But it is never attacking itself. It is attacking something we can't see." That really stuck with me and I guess the biggest lesson I've learnt from four years of chronic illness is to listen to your body. I'm proud of myself because I never gave up on researching for an answer and I finally found it. I dedicated myself heart soul and body to getting better. 

References

[1] Nathan, N. (2019). Toxic: Heal your body from mold toxicity, Lyme disease, multiple chemical sensitivities, and chronic environmental illness. Skyhorse Publishing.

[2] Shoemaker, R. C. (2017). Inflammation induced chronic fatiguing illnesses: A steady march towards understanding mechanisms and identifying new biomarkers and therapies. Frontiers in Neurology, 8, 144. https://doi.org/10.3389/fneur.2017.00144

[3] Crista, J. (2018). Break the mold: 5 tools to conquer mold and take back your health. Independently published.

[4] Shoemaker, R. C., & House, D. E. (2006). Sick building syndrome (SBS) and exposure to water-damaged buildings: Time series study, clinical trial, and mechanisms. Neurotoxicology and Teratology, 28(5), 573-588. https://doi.org/10.1016/j.ntt.2006.07.003

[5] Ryan, J. C., Wu, Q., & Shoemaker, R. C. (2015). Transcriptomic signatures in whole blood of patients who acquire a chronic inflammatory response syndrome (CIRS) following an exposure to the marine toxin ciguatoxin. BMC Medical Genomics, 8, 15. https://doi.org/10.1186/s12920-015-0089-x

[6] Shoemaker, R. C., & House, D. E. (2005). A time-series study of sick building syndrome: Chronic, biotoxin-associated illness from exposure to water-damaged buildings. Neurotoxicology and Teratology, 27(1), 29-46. https://doi.org/10.1016/j.ntt.2004.07.005

[7] Shoemaker, R. C., House, D., & Ryan, J. C. (2014). Structural brain abnormalities in patients with inflammatory illness acquired following exposure to water-damaged buildings: A volumetric MRI study using NeuroQuant®. Neurotoxicology and Teratology, 45, 18-26. https://doi.org/10.1016/j.ntt.2014.06.004

[8] Shoemaker, R. C., Giclas, P. C., Crowder, C., House, D., & Glovsky, M. M. (2008). Complement split products C3a and C4a are early markers of acute Lyme disease in tick bite patients in the United States. International Archives of Allergy and Immunology, 146(3), 255–261. https://doi.org/10.1159/000116362

[9] Schwartz, L., & Vukelic, A. (2019). Building science and human health. In Building Science (pp. 159-172). CRC Press. https://doi.org/10.1201/b23304-12

[10] Shoemaker, R. (n.d.). 12-step Shoemaker protocol for CIRS. Surviving Mold. Retrieved from https://www.survivingmold.com/docs/12_STEP_SHOEMAKER_PROTOCOL_FOR_CIRS.PDF

[11] Hardin, B. D., Kelman, B. J., & Saxon, A. (2017). Adverse human health effects associated with molds in the indoor environment. Toxins, 9(7), 203. https://doi.org/10.3390/toxins9070203

[12] Shoemaker, R. C., & Ryan, J. C. (2021). Structural brain abnormalities in patients with chronic inflammatory response syndrome. Current Molecular Pharmacology, 14(5), 802-819. https://doi.org/10.2174/1874467214666210622122852