CIRS: Why Testing for Mycotoxins Isn’t Enough and What To Do Instead

CIRS: Why Testing for Mycotoxins May not be Enough and What To Do Instead

Brain fog.

Difficulty concentrating.

Fatigue.

You probably come across symptoms like these all the time in clinic, but are you considering mould and biotoxin exposure as possible root causes?  Mould is just one type of biotoxin, and there are plenty of other biotoxins found in water-damaged environments, but as mould is perhaps the most ubiquitous, and can also contribute to acute respiratory symptoms,  it is the one most commonly focused on.

As a nation, the UK has a big problem with damp. According to Shelter, 1 in 5 homes in the UK are affected by damp and mould. Poor insulation, poor ventilation and poor building practices including a lack of damp proofing are some of the reasons why British homes are so damp, not to mention our rainy, humid climate.

In addition to this environmental predisposition to damp, an estimated 25% of people have a genetic predisposition to being extra sensitive to mould. It is thought that their genetic HLA predisposition means that their adaptive immune systems are unable to process by-products that result from exposure to mould and/or biotoxins in the way the rest of us can. And as a result, when these individuals are exposed to mould or biotoxins, they are at risk of developing CIRS - Chronic Inflammatory Response Syndrome - a multi-system and multi-symptom illness. CIRS is typically associated with an innate immune response as it is thought to occur when the innate immune system does not have an optimal relationship with the adaptive immune system. This means mould-related antigens that have been flagged and tagged by the innate immune system are not processed by the adaptive immune system, and as they are not ‘handed over’ the continued innate immune system activity contributes to an inflammatory response.

Exposure to mould can come in the forms of mouldy/damp bathrooms, kitchens, leaky washing machines, rising damp, damp basements and even the inside of cars affected by water damage.. CIRS can also develop in susceptible individuals as a result of exposure to other biotoxins such as bacterial infections, including Lyme (and associated co-infections), algal bloom compounds (cyanobacteria), fish-related food poisoning (relating to dinoflagellates). Certain spider bites are also known to contribute to the same pattern of altered innate immune activation.  When the innate immune system is unable to hand over one of these potential antigens to the adaptive immune system, or when both have an exaggerated response we see changes in human health.

With a quarter of the population having this genetic susceptibility to CIRS, there is a likelihood that as a practitioner, you may see these patients in your clinic.

CIRS is Often Misdiagnosed

Unfortunately, CIRS patients often get misdiagnosed. CIRS can look like Chronic Fatigue Syndrome (CFS), Post Traumatic Stress Disorder (PTSD), anxiety, depression, fibromyalgia and ADHD, to name a few. Changes in energy, hormones and cognition are commonly experienced with CIRS. When a CIRS patient receives the wrong diagnosis, their treatment ultimately won’t be as affective, because it isn’t getting to the root cause, and they’ll keep relapsing, so it is essential to be able to correctly identify a CIRS client so they can get the support they need.

CIRS and Genetics: What’s The Link?

When encountering biotoxins, most people’s immune systems are able to identify these toxins; they are flagged, tagged by the innate immune system, and then processed by the adaptive immune system, which makes an antibody to the antigen, and the residue is essentially then excreted. But for those with certain HLA haplotypes, encountering a biotoxin, such as mould, has a completely different effect, resulting in a cytokine storm.

The key information here is that in CIRS, miscommunication by both sides of the immune system is what’s contributing to the patient becoming sick. Biotoxins are a trigger for that, but the damage - inflammation and resulting tissue damage - is caused by a confused immune system. CIRS is a dysfunctional reaction of the immune system, not simply the exposure to biotoxins.

When To Consider CIRS? Symptom Clusters

CIRS patients often arrive with a myriad of symptoms. If your client has at least one symptom in 8 of the following symptoms clusters (or 6 for a child), you may want to consider ruling out CIRS:

The 37 Symptom Roster

1. Fatigue
2. Weakness, aches/achiness, decreased assimilation of new knowledge, headache, light sensitivity
3. Impaired memory, decreased word finding
4. Difficulty concentrating
5. Joint pain, morning stiffness, cramps
6. Unusual skin sensitivity, tingling, tremors, unusual pain
7. Shortness of breath or congested sinuses
8. Cough, excessive thirst, confusion
9. Appetite swings, difficult regulating body temperature, increased urinary frequency
10. Red eyes, blurred vision, night sweats, mood swings, ‘ice-pick’ pain
11. Abdominal pain, diarrhoea or numbness
12. Disorientation, tearing of the eyes, metallic taste
13. Static shocks, vertigo

If your clients’ symptoms are also concentrated in the top half of the list then this is also indicative due to the algorithm that was used to define the list of symptoms.

Testing for CIRS: Why Mycotoxins Are Useless

CIRS patients may have some awareness that their illness is linked to their environment. They may come to you after consulting internet search engines and think that their symptoms relate to mycotoxin exposure and colonisation. You might be tempted to run a urinary mycotoxins test, but CIRS experts do not recommend this test, and here’s why:

There is nothing diagnostic about a urinary mycotoxin test, it is only indicating exposure, and then a normal physiological response; excretion.. Urinary mycotoxins levels can be the same in healthy populations as they are in sick patients, and may have come from food, not just from a water-damaged environment.  Aflatoxin and ochratoxin are found widely in our food for example.  It is not possible to screen for CIRS via urinary mycotoxins. Urinary mycotoxins testing is a test that shows exposure, not response. A positive result merely indicates exposure, but tells us nothing of the response. CIRS is about how the immune system is responding to the presence of biotoxins, not merely the presence of mould and its associated mycotoxins. CIRS is not a disease of toxicity, it’s an illness of immunoreactivity - one that a quarter of the population has a genetic predisposition towards developing.

Low levels of mycotoxins may be present in many different foods, including spices, dried fruits and coffee beans. A patient may have been exposed to mould through food. A urinary mycotoxin test does not indicate anything clinically useful because most of us are exposed to small amounts on an ongoing basis and have no problem naturally eliminating them.  A mycotoxin test therefore can be used in much the same way as environmental testing; it is just an indicative test for exposure.  The difference with environmental testing is that it gives clarity on where and what the exposure is, and much more direction on where any remediation might need to take place.

Testing for CIRS

To test effectively for CIRS, we need to do a deeper dive. To start with, a Visual Contrast Sensitivity (VCS) test is an easy and cheap way to assess whether or not there is a possibility of biotoxin exposure. This test is a non-specific test that gives an indication of capillary function, and typically, CIRS patients will fail this test, due to inflammatory effects on capillaries leading to a reduced ability to discern shades of grey. A failed VCS test indicates a need for further clinical evaluation.  A CIRS patient’s VCS test capability has been shown to change within 48 hours of exposure to biotoxins, as immune system and metabolic changes mediate capillary function.

Diagnosing CIRS requires two criteria, according to the 2017 McMahon Alternate Means Criteria. Firstly it requires a patient to have 8 or more of the 13 symptom clusters on the 37 Symptom Roster (see above- 6 for children under 1). Secondly, it requires patients to have 5 or more abnormal lab tests from the following list (4 or more for children under 11): HLA, aMSH, TGFb1, VIP, MMP9, C4a, ACLA/AGA, ADH/Osmolality, ACTH/Cortisol and MARCoNS. Both criteria must be met to make a diagnosis.

If you would like advice or information or further training opportunities relating to developing your understanding of the biotoxin landscape, including CIRS, please drop us an email. Colab Services are hosting, in association with Amrita Nutrition, a series of education events in the first quarter of 2024 relating to Biotoxin exposure and resulting health effects.  Please see our website for full details.