It has been a little quiet on this blog of late as two years ago I was diagnosed with Chronic Inflammatory Response Syndrome (CIRS).
Fortunately, I am much better, so I wanted to share with you what I have learned about this syndrome.
Not only does this syndrome affect up to 25% of the population, but many of my clients are discovering they have CIRS.
Conditions such as mast cell activation syndrome, multiple chemical sensitivity syndrome, myalgic encephalomyelitis, chronic fatigue syndrome, post-Lyme syndrome, gulf war syndrome, and adrenal fatigue could actually have mold exposure as their root cause.
I consider it to be one of the factors that are linked to one of the three root causes of chronic ill health – leaky gut, autoimmunity, and mast-cell activation.
Here is my story. See if any of it sounds familiar.
About two years ago I moved house. On the first night, when sitting in the living room, I was overcome with fatigue and thought I did not know how I was going to live here. There was also a musty smell in one of the spare bedrooms. It did not stop there.
I went from being productive to not being able to carry shopping, not being able to push a knife through a vegetable, and about 5 minutes of energy an hour.
I also could not remember anything. If you asked me what I had done that morning, I could not tell you. Not even a glimmer of what I had done. And don’t even get me started about where I parked my car!
I also could not concentrate on doing anything. I could not read and could not write at length (because I could not remember what I had just read or written). I also would forget that I had something on the stove when cooking!
In the meantime, the musty smell in the spare bedroom was getting stronger and stronger, to the point I could not go into the room without breaking out in a rash.
So what was the cause of all this chaos? It was mold!
Mast Cell Activation
CIRS does not affect the mast cell. It affects the T-cell.
The t-cell mounts a defense one step earlier than the mast cell. T-cells are blood cells that circulate in our bodies, scanning for cellular abnormalities and infections. If they find something abnormal, it starts releasing pro-inflammatory cytokines, to deal with the foreign invaders. It is an integral part of our immune system.
The T-cells recognize biotoxins as foreign invaders.
In genetically compromised individuals, however, the T-cells are thwarted in their attempts. They are missing part of the instructions in that gene needed to complete the process. The t-cells keep releasing pro-inflammatory cytokines that block and eventually damage receptors in the hypothalamus leading to fatigue, poor concentration, and short-term memory problems, which are the hallmark of CIRS.
This process is not only ineffective, but it is also chaotic.
The t-cells initiate the process. When thwarted (because of the missing gene instructions), they keep trying and trying, and even keep trying when the biotoxins are removed with binders. Without the proper instructions, the immune system gets stuck.
Dr. Theo Theoharides, one of the leading experts on mast cell activation disorder, also has mold illness on his radar, co-authoring a recent paper. The authors searched PubMed and identified 16 studies (with a total of 1580 patients). The article did not address the role of the mast cell in detail. It simply concluded that “the effects of mycotoxins are mediated via different pathways that include the secretion of pro-inflammatory cytokines, especially from mast cells.”
While this may be so, the research around the T-cell suggests that this would appear to be a downstream effect, and mold exposure rather than the immune system’s response is the core issue.
Do You Have CIRS?
Since being diagnosed with CIRS, I have been screening clients for it, and have been struck by how many clients who suspect mast cell activation disorder, actually have CIRS.
If you are wondering if you have CIRS, then here is a way to know.
1. Do You Have Symptoms?
CIRS is a multi-system illness that causes widespread pronounced symptoms.
The cornerstone symptoms are fatigue, memory, and concentration problems, but there is typically widespread metabolic chaos. These symptoms are summarized into clusters of symptoms:
If you have just one or two symptoms, like fatigue, or insomnia, then it is not likely CIRS. CIRS typically involves symptoms from at least six clusters and commonly up to ten symptom clusters.
2. Have You had a Biotoxin Exposure?
The key trigger for CIRS is current or past exposure to biotoxin exposure. Usually, this is exposure to a water-damaged building, but there are other sources, too, including tick bites, contaminated water, contaminated fish, or spider bites. Lyme disease is a crucial trigger for CIRS.
Mold is a type of fungus that grows on wet surfaces. A mold usually is colorless or white. However, when the fungus is producing mycotoxins, it produces colorful spores. Climate change favors the growth of mold.
3. Do You Have the HLA DQ/DR genes?
In 95% of CIRS cases, the person has a genetic susceptibility in their HLA DQ/DR genes. In 5% of CIRS cases, the HLA gene is not genetically susceptible. It is hypothesized that if the biotoxins are high enough, it can lower the protective hormones and cause an inflammatory response regardless. Regardless of genetic susceptibility, the treatment is the same.
Approximately 25% of the population has this genetic susceptibility. You cannot use 23andMe® to assess for CIRS. A simple blood test, the “celiac gene study,” should be done. You will then need to go to the doctor and get the test interpreted.
4. Have You Had an Inflammatory Event?
Even if a person has the HLA DQ/DR gene and is exposed to biotoxins, they may not develop CIRS.
HLA susceptible individuals often have had a severe inflammatory event, such as glandular fever, viral infections, Lyme disease, surgery, or extreme stress, that has switched on their HLA genes.
Mine, for example, was severe adverse drug reactions while going into menopause, which reduced my protective hormones. Once switched on, the HLA susceptible individual, when exposed to biotoxins, can develop CIRS.
What to Do
If you meet the criteria for CIRS, then the following is a process I recommend:
While a positive visual contrast sensitivity test is not essential, it is a reliable predictor in most cases. It is also a cheaper and simpler tool for monitoring progress than other testing methods. For example, my visual contrast test dramatically improved once I had resolved all the water damage in my house.
If you get a negative result and you still meet the criteria, then it is important to continue still to rule in or out CIRS.
The CIRS treatment protocol is complex. Moreover, we are all in unique environments that we must address ourselves.
One of the best things I did was take The Mold Illness Made Simple Course, which helped me to understand in detail what I needed to do to get better. By the end, I felt empowered. Before that, I was fumbling around, not making progress because I was overwhelmed, and spending a lot of time and money on things that were not helpful. Dr. Sandeep Gupta, a world-leading expert on CIRS, trained in the Shoemaker Protocol, and a certified medical doctor, is the course lecturer.
He is kindly offering a discount of 25% at www.moldillnessmadesimple.com. Enter the code LOWHISTAMINE25
3. Get Into A Biotoxin Free Environment
One of the most critical steps in recovery is getting into a biotoxins-free environment. This is, quite frankly, the most crucial step. Little progress can be made if you are still exposed. You won’t get well in the same environment you got sick in.
This is not simply a case of removing the mold. The level of mold remediation is significantly more stringent with CIRS. There are also specific steps that need to be taken to remain in a mold-free environment.
The mold remediation industry is unregulated, and there are many competing different points of view. Some work one way. Others work with one another. Some milk the opportunity. Others don’t do enough.
I attempted to do this before taking the Mold Illness Made Simple Course, which was a nightmare. It was confusing and stressful. It would have been so much easier had I done the course first.
4. Hire A Mould Literate Doctor
CIRS is a relatively specialized diagnosis with specialized testing and treatment protocols.
I believe it is vital to add someone with direct experience in treating this condition to your team. It’s a case of a doctor being as good as they see, with doctors trained in the Shoemaker protocol seeing 300 – 500 CIRS patients versus a well-meaning and interested practitioner who might only see one of two cases.
Some of my clients have also reported that they have found it easier to access a mold literate doctor having done the Mold Illness Made Simple Course, as many practitioners prequalify on their waiting list.
5. Detoxify with Binders
Once in a safe environment, or sometimes prior, the body eliminates the bio-toxins. This involves the use of either medication or supplements.
The Shoemaker Protocol is predominantly medication focused, although there are also natural alternatives. The natural alternatives take longer but are highly effective.
I did not tolerate medication alternatives and successfully detoxified mold using natural binders.
Dietary recommendations may also be recommended, including a gluten-free diet or a low amylose diet.
6. Tests for Biotoxins
Once you are in a biotoxins-free environment and have detoxified the residues in your body, tests need to be completed to determine the inflammatory markers and hormonal changes associated with CIRS. This includes:
Inflammatory markers for C4a, C3a, TGF-beta1, MMP-9, MSH, VIP, and/or VEGF,
Adrenal fatigue test and hormonal markers,
Nasal infections via a swab for MARCoNS,
Brain swelling via a NeuroQuant® brain MRI, and
Gene changes via a Progene DX transcriptomic RNA test.
7. Correct Hormonal, Inflammatory, and Genetic Changes
The final step of The Shoemaker Protocol is correcting hormonal, inflammatory, and genetic changes. These need to be done in a particular order to be effective. For example, getting out of mold toxin exposure is the first and arguably the most crucial step. With each step, significant relief from symptoms can be achieved. The later steps are focused on reversing the damage.
8. Test for IgE Allergies
Since first writing this article, I have also found another core piece of my puzzle: an IgE allergy to mold.
It is pretty surprising that, having taken many courses on mold and worked with mold literate doctors, and no one discusses testing for a true allergy to mold.
During the recent flood in Australia, while my house was safe and mold-free, there was a sea of mold around me. This prompted my doctor, who is mold literate, to run an IgE test to see if I had an allergy to mold. Indeed I do (or course I would!), and I am now going through a process of desensitizing to individual molds, which are helping enormously.
True healing can begin when the root cause is identified.
One of the difficulties that many of my clients struggle with is that a diagnosis of mast cell activation disorder or chronic fatigue syndrome does not provide any clear root cause.
While a diagnosis may provide validation for symptoms, finding the root cause is empowering, as it gives clues as to what we can do for ourselves to optimize health.
I have made dramatic improvements by identifying biotoxins as a root cause and educating myself on CIRS. You can too.