Do You Have Chronic Inflammatory Response Syndrome (CIRS)?
It has been a little quiet on this blog of late as two years ago I was diagnosed with CIRS.
Fortunately, I am now much better, and 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.
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 really 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 to do 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!
It’s the T-Cell (Not the Mast Cell)
CIRS does not affect the mast cell. It affects the T-cell. So mast cell stabilizers are simply not going to help.
The t-cell mounts a defense one step earlier than the mast cell.
T-cells are blood cells that circulate around 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.
Biotoxins are recognized by the T-cells as a foreign invader.
In genetically compromised individuals, however, the T-cells are thwarted in their attempts. They are missing part of the instructions contained 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, that are the hallmark of CIRS.
This process is not only ineffective it is 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 right instructions, the immune system gets stuck.
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.
Do You Have The 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.
Have you Had Bio-toxin Exposure?
The key trigger for CIRS is current or past exposure to biotoxin exposure.
Usually, this is an 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 key trigger for CIRS.
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 the genetic susceptibility, the treatment is the same.
Approximately 25% of the population have 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.
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, whilst 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:
Whilst a positive visual contrast sensitivity test is not essential it is a reliable predictor in the majority of cases.
It is also a cheaper and simpler tool for monitoring progress than other testing methods. For example, my visual contrast test dramatically improved on resolving of all water damage in my house.
If you get a negative result and you still meet the criteria then it is important to still continue to rule in or out CIRS.
The CIRS treatment protocol is complex.
One of the best things I did was take the Mold Illness Made Simple is an online course that helped me to understand in detail what I needed to do to get better.
By the end, I felt empowered. Prior to 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, who is a Shoemaker certified medical doctor, is the course lecturer. An added bonus is you also get access to Dr. Gupta via a private Facebook group.
Readers of this blog can click this link and enter the coupon “CLARITY10” to get 10% off.
Get into a “Biotoxin” Free Environment
One of the most important steps in recovery is getting into a biotoxins free environment.
This is quite frankly the most important step. Little progress can be made if you are still being 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 another. Some milk the opportunity. Others don’t do enough.
I attempted to do this prior to taking the Mold Illness Made Simple Course and it was a nightmare. It was confusing and stressful. It would have been so much easier had I done the course first.
Hire a Shoemaker Trained Doctor
CIRS is a relatively specialized diagnosis with specialized testing and treatment protocols.
I believe that it is important to add to your team someone with direct experience in treating this condition.
It’s a case of a doctor being as good as what they see, with Shoemaker doctors seeing 300 – 500 CIRS patients, versus a well-meaning and interested practitioner, that might only see one of two cases.
Some of my clients have also reported that they have found it easier to access a Shoemaker doctor having done the Mold Illness Made Simple Course as many practitioners prequalify their waiting list.
I am also able to help you with non-drug interventions to recover from CIRS.
Detoxify Accumulated Biotoxins
Once in a safe environment, or sometimes prior, the bio-toxins are eliminated from the body.
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.
Dietary recommendations, including a gluten-free diet, or a low amylose diet may also be recommended.
Test for Changes
Once you are in a biotoxins free environment, and you have detoxified the residues in your body, the changes can be rectified.
Test 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 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.
Correct Hormonal, Inflammatory and Genetic Changes
The final step is the correction of the hormonal, inflammatory and genetic changes.
These need to be done in a particular order in order to be effective. For example, getting out of mold toxin exposure is the first, and arguably the most important step.
With each step, a significant symptoms relief can be achieved. The later steps are focused on reversing the damage.
True healing can begin when the route 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 route cause.
Whilst a diagnosis may provide validation for symptoms, finding the route cause is empowering, as it gives clues as to what we can do for ourselves to optimize health.
By identifying biotoxins as a route cause, and educating myself on CIRS, I have had dramatic improvements. You can too.