For most of us when someone we love gets sick or becomes unwell, it is usually with something we have some understanding of even if we do not have any experience of it. And, as a result, we usually know how to care for this person and have some compassion for what they’re going through.

But for those of us who are suffering with **mould illness, it can be very difficult for our friends, family, colleagues and acquaintances to wrap their head around what we’re dealing with.

And in many cases, because it is not a condition that is widely known amongst the medical fraternity,  sufferers can remain undiagnosed, misdiagnosed, or worse. All too often sufferers are viewed as hypochondriacs/malingerers* (making it up) or considered to have some kind of mental illness where this stuff seems real but isn’t really.

*Interestingly the symptoms purported to be favoured amongst ‘malingerers’ are fibromyalgia, chronic fatigue syndrome and chronic pain. Sadly, these things are most likely to be the truth but when allopathic medical convention can’t adequately define and measure something, it is commonly declared imaginary.

I’d like you to consider the following for a moment:

• If someone you love has allergies or other respiratory issues like a constantly runny or blocked nose, sinusitis, cough, sore throat, wheezing, shortness of breath, asthma, recurrent infections or bronchitis …you would know that they have difficulty breathing properly, their ability to function will be impaired, and in some cases their issues could become life-threatening and a matter of emergency. In the case of ongoing and major issues you’d understand that they have difficulty getting enough oxygen, that their physical ability is restricted as a result, and they often feel exhausted too.
• If someone you love has eczema or dermatitis … you would understand that their skin feels very uncomfortable to be in and can feel irritated, dry and even sore. You might also notice they are unable to tolerate certain laundry products and may even react to personal care products as well. And chances are you’ll have seen that person applying topical remedies to try and provide some relief.
• If someone you love has morning sickness… you know that they likely feel nauseous, unwell and basically hungover – for more days than not, and potentially for much of the day (and night). And you’d get why they sometimes will not feel well enough to do much of anything, let alone socialise. No doubt you will have witnessed the various things they use to try and minimise feeling sick.
• If someone you love has a migraine… you would know they have an extremely painful headache, are nauseous and will be sensitive to noise, light, temperature and possibly smell. You will observe how incapacitated by it they are and how all they can do is retreat to a dark, quiet room – possibly with an ice pack on their head – and wait for the medication to kick in.
• If someone you love has chronic fatigue syndrome… you’ll know they are tired all the time. And no matter how much time they spend in bed, and sleep, they never seem to have much energy. This can leave them housebound and bedridden.
• If someone you love has IBS (irritable bowel syndrome) or some other gastrointestinal condition… you’d understand that their tummy is sensitive, and might be reactive to foods normally tolerated by others, as well as it causing bathroom difficulties and abdominal bloating, discomfort and even pain. Often they will have to avoid eating and drinking certain things to avoid triggering further discomfort and likely also have medication to manage what would otherwise affect their quality of life quite a lot. You may also notice how much of an impact that this has on socialising as eating out becomes tricky.
• If someone you love has anxiety, depression and mood swings… you’d know that they are suffering – unable to experience happy, healthy feelings most of the time but rather the opposite. You’ll also notice how much this affects how they behave, how they relate to other people, and how they relate to life as they see it.
• If someone you love has chronic pain… you’d know they are suffering terribly, likely consumed by pain and trying to manage it – which affects their moods and their ability to work and socialise.
• If someone you love has insomnia… you’ll likely get that they are tired, under the weather and suffer at nighttime when they want to be asleep but are not. You’ll also notice that they’re exhausted during the day, and circadian rhythms can start to unravel. It also affects their mood.
• If someone you love has chemical poisoning… you’d realise their liver is on tenterhooks and they can’t tolerate chemicals (natural or manmade) and this can affect where they can go and what they can tolerate. It means perfumes, scented candles, new furniture or carpet, fresh paint, cleaning products and pollution (amongst many other examples) can make them feel very ill. They likely won’t be able to drink alcohol, or coffee and may react badly to a number of things that don’t bother other people.
• If someone you love has Meniere’s disease … you’d know they experience feeling dizzy all the time,so much so that their balance can be badly affected, they have trouble moving around and they may even lose their balance and coordination. You will see how debilitating and distressing that is for them.
• If someone you love has learning difficulties… they might have trouble with attention and focus, learning and recalling things, and may even come across as someone who is intellectually challenged. I’m sure you’ll also have seen the frustration that can occur as a result, and the impact that it can have on mood.
• If someone you love has Alzheimer’s disease… you’d know that they have difficulty remembering things, they can forget easily, may not be able to find the right words to speak, struggle to do basic mathematical sums they used to do easily, lose their train of thought and they can become disorientated and confused and upset. They may not even recognise you at times.

Now imagine if a person you love has symptoms of all of the above, all at the same time.

Add to this body odour, blood pressure irregularities, sickly night sweats, appetite swings, static shocks, numb extremities, muscle cramps/spasms/tremors, loss of physical coordination (clumsiness), and escalating food intolerances…. and this is what full blown mould illness is like. An ongoing daily battle living in a body where the immune system has been triggered into widespread alarm and extreme inflammation.

Sound a bit far fetched to you?

Allow me to explain:

First of all mould, and its spores and hyphae, can trigger allergy and respiratory symptoms just like any other airborne allergen or particulate – like pollen for example. This causes local histamine production, chronic allergy-type symptoms (in the event of chronic exposure) and can even trigger asthma in some people. Respiratory issues are almost universal when it comes to mould, for most people. If someone always has runny nose, allergies, cough etc this can be an indicator of a mould issue in their home or office.

Then you have the mycotoxins and VOCs mould produces which are all toxic chemicals a persons body must metabolise. Depending on the type, level of exposure and other factors like genetics – these can product symptoms anywhere from mild toxicity through to chemical poisoning and damage organs like the kidneys, liver and brain. Many are teratogenic (can cause miscarriage and birth defects) and carcinogenic (meaning they can cause cancer).

And finally, you have the inflammatory effects – this where the immune system goes haywire. In an attempt to deal with mould and its respective components and byproducts the immune system can respond very aggressively.

Unfortunately when it comes to being able to effectively metabolise and eliminate chemicals, especially mycotoxins, and keep in inflammation in check – there are some of us with a genetic makeup that makes that virtually impossible (without specific medical intervention). The toxicity and inflammation most often results in:

High levels of the following:

• C4a – this has become the most significant inflammatory marker when assessing the innate immune response to a water-damaged building (aka the mould and other micro-organisms that flourish in it). It activates inflammatory responses and can be detected within 12 hours of exposure. It is an anaphylatoxin, causing smooth muscle contraction, histamine release from mast cells, and enhanced vessel permeability. It also increases inflammation and the generation of free radicals.

• TGFß-1 – is a protein that has important regulatory effects throughout innate immune pathways and can impair regulatory T-cell function, which in turn contributes to the activation of autoimmune conditions. TGFß-1 levels can rise considerably during and following mould exposure (typically >5,000 pg/ml) and neurologic, autoimmune and many other systemic problems may result. It has also been identified as playing a role in the dramatic increase of childhood asthma, as it appears to effect changes to the airways making them more reactive. Interestingly, the EPA says that 21% of all new cases of asthma are due to exposure to water-damaged buildings.

• MMP-9 – Matrix metalloproteinase 9 is an enzyme that is involved in the breakdown of extracellular matrix (ECM) which is comprised of numerous extracellular tissues, such as collagen, proteoglycans and glycosaminoglycans (such as glucosamine, hyaluronic acid, chondroitin sulphate, heparan sulphate). The ECM is a critical regulator of cell-to cell communication, growth factor binding, and plays a major role in various immune, endocrine and neurological networks. It has been implicated in pathogenesis COPD by destruction of lung elastin, in rheumatoid arthritis, atherosclerosis, cardiomyopathy, and abdominal aortic aneurysm – and likely accounts for the visible accelerated ageing and receding gums common in mould illness patients. It also allows inflammatory elements to penetrate the subintimal spaces, where further delivery into solid organs (brain, lung, muscle, peripheral nerve and joint) is initiated.

• Leptin – this compound is an inflammatory adipocytokine that, in excess, will make you put on weight as it upregulates how tightly the body holds onto fat.  High levels lead to rapid weight gain and, furthermore, the weight gain it causes will be unresponsive to usual weight loss measures. Many people with mould illness will experience unexplained weight gain and find it impossible to shift it whilst still affected. The inflammatory responses that causes leptin levels to rise ultimately results in patients who are always tired, in chronic pain, and overweight.

Low levels of the following:

• VIP – Vasoactive intestinal polypeptide (VIP) is a neuroregulatory hormone/cytokine that regulates peripheral cytokine responses, pulmonary artery pressures, and inflammatory responses throughout the body. Low levels are found in mould illness patients and this leads to unusual shortness of breath, especially in exercise (and subsequently post-exertional malaise or extreme tiredness after exercise).  VIP plays a role similar to MSH in regulating inflammatory responses. It also affects the digestive system accounting for some of the gastrointestinal discomfort mould illness sufferers experience.

• α-MSH – Alpha melanocyte stimulating hormone has multiple anti-inflammatory and neurohormonal regulatory functions, exerting regulatory control on peripheral cytokine release, as well as on both anterior and posterior pituitary function. In mould illness, αMSH is insufficient in over 95% of patients.  This means ongoing fatigue, pain, hormone abnormalities, mood swings, and much more. Furthermore, it increases susceptibility to mould illness. As a regulatory neuropeptide it also controls many other hormones, inflammation pathways, and basic defences against invading microbes.  Without αMSH, bad things happen; chronic sleep disorders with non-restful sleep develop, and endorphin production is reduced, so chronic pain follows.

• VEGF – Vascular endothelial growth factor is a peptide made by cells that stimulates new blood vessel formation and increases blood flow in the capillary beds.  Deficiency of VEGF is a serious problem and quite common in mould illness patients that must be corrected.  If you don’t have sufficient blood flow, cells begin starve and don’t work properly and this can show up as pins and needles, and numbness. In combination with ADH dysregulation (and subsequent excess urination/dehydration/loss of electrolytes) this will also result in muscle cramps.

• ADH – Antidiuretic hormone, or vasopressin, is a hormone that controls the amount of water your body eliminates. Symptoms associated with dysregulation include dehydration, frequent urination, with urine showing low specific gravity; excessive and unquenchable thirst and sensitivity to static electrical shocks; as well as oedema and rapid weight gain due to fluid retention during initial correction of ADH deficits.

Mould illness can also raise antibodies such as antigliadin (due to low MSH) and anticardiolipin.

As you can see there is a lot going on inside someone with mould illness.

As if that wasn’t enough, there are secondary outcomes that commonly develop for mould illness sufferers including MCS (multiple chemical sensitivity*), POTS syndrome (postural orthostatic tachycardia) – meaning a super fast heartbeat upon standing up), MCAS (mast cell activation syndrome) and EMF sensitivity.

* To date, every multiple chemical sensitivity patient Dr Shoemaker has seen have had low VIP.

Having a condition that is not widely understood can be a frightening and isolating experience at the best of times. It is a very specialist area with only a few handfuls of functional medicine practitioners (Naturopaths and Integrative GPs) here in Australia that are specifically trained and CIRS-literate. Add to that genetic variations where not all inhabitants of a water-damaged building will experience the same effects, and ‘mouldies’ can begin to feel very frightened, lonely and much like the ‘boy in the bubble’.

It is particularly difficult because of the effects on the brain. Neurologist Dale Bredeson has coined the term ‘Inhalational Alzheimers’ to denote type 3 Alzheimer’s disease which is the result of exposure to specific toxins – a phenotypic manifestation of chronic inflammatory response syndrome (CIRS) due to biotoxins such as mycotoxins. A recent report has even identified fungi in the brains of patients who had died with Alzheimer’s disease. Trying to function, let alone work out what’s wrong with you becomes very challenging indeed, and someone with mould illness is going to need all the love, support, and understanding they can get.

**Mould illness is also commonly referred to as biotoxin illness, or CIRS (short for chronic inflammatory response syndrome) and may sometimes away also be described with the term ‘sick building syndrome’. NB: there are other types of biotoxin illnesses like Lyme, and some of what I have referred to may be relevant for them as well, but please note I have written this from the mould illness point of view.