Do You Have Chronic Inflammatory Response Syndrome (CIRS)?

February 14, 2017  |  Blog, Chronic Fatigue, Histamine Intolerance

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:

CIRS-symptom-clusters-shoemaker

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:

Take The Visual Contrast Test

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.

Take The Mold Illness Made Simple Course

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.

CRIS-treatment-steps-shoemaker

With each step, a significant symptoms relief can be achieved. The later steps are focused on reversing the damage. 

Conclusion

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.

Resources:

Mold Illness Made Simple Course

Dr Shoemaker’s Surviving Mould

List of Shomaker Certified Practitioners

Brisbane Courier Newspaper: Brisbane Woman Says Hidden Health Hazard ” Made Me Think I was Nuts”.

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  • Dot Fowler

    Hi – with regard to the non-drug interventions to recover from CIRS that you said you could help with, what would this involve? Would I still need to get someone to dispense prescription only medicines? As I am in the UK and we don’t seem to have any Shoemaker practitioners, I am lost as to where to turn.

    • There are alternatives to prescription medications that are natural binders. You may still need a co-operative gp to assist with tests.

  • Jenny R

    Hello Alison. My 27 year old daughter has histamine intolerance (identified thru elimination diet), but has gradually controlled her symptoms with a low amine diet. She recently moved house, developed dust allergy & was diagnosed borderline asthmatic. Asthma medication caused anxiety/panic attacks, so she stopped taking it, but adrenaline surges/ anxiety attacks have continued. Is it possible the dust allergy has tipped her ‘over the edge’ on histamine, & this is causing the anxiety & breathing issues?? Appreciate your help!

    • Given the nature of your question to receive personal attention from Alison, specific to your daughter’s individual needs, it would be best for your daughter to book a comprehensive health review here http://alisonvickery.com.au/work-with-me/. Alison cannot give personal advice as you daughter is not her client.

  • Erik Johnson

    Nice blog

    • Hi Erik thanks for your kind comment – of course I recognise you as one of the original mould warriors. Thanks for paving the way and helping us moldies.

  • Yes my believe is to support the whole body (which is what is needed with health rather than disease management) and to remove any stressors on the body that the body is trying to adjust for. Its the stressors that are the root cause of what the body is trying very hard to adjust for. A diagnosis of a need for labels sometimes gets in the way of that process.

  • Sandra Pawula

    Dear Alison,

    Thank you so much for writing about CIRS. I’m wondering if it would be worthwhile to take the Mold Illness Made Simple class if I’m not inclined to take prescription medicine and I’m not currently living in a mold damaged house, but remain ill. I initially became ill more than 10 years ago after living in a moldy home and have never been able to recover. I have chronically elevated serum tryptase, but I suspect this is an issue secondary to mold illness as many of your clients are discovering. I’m also considering working with you, but it sounds like it might still be beneficial to take the course. I would love to hear your thoughts.

    • I think it is a personal decision as to whether to help yourself (by doing the course) or getting coaching (with detailed support). So how much detail do you like? If you are not in a mold damaged house that is great. There is still the issue of mould avoidance (for example I cannot go into charity shops!), detoxification of the mould from your body, and correction of the inflammation. Its complicated. There are natural alternatives being used. The course does cover natural binders for detoxification of the mould but not natural alternatives for key markers. I hope that helps.

      • Sandra Pawula

        Yes, that helps. As you say, it’s complicated!

  • Karen Allen

    Hi Alison, First, I have to say I have enjoyed all of your letters in the past and this one too. I thought for the last 4 years I had Mast Cell MCAD.

    In the last 2 month I went to a new holistic doctor who said I need to do a completely restrictive diet from sweets, carbs and the like and also has me on a prescription of Nystatin, Caprylix and another fungal med called CandidArrest too. He will eventually give me something to heal my gut as well. Do you think this protocol is enough or should I go to the doctors you recommend? I have been on this diet for a month and have another 3 weeks to go.

    I can’t say I see the inflammation going down like I would like too. Any thoughts would be so appreciated.

    Thank you for all your wonderful wisdom and I am glad you are feeling better.

    • HI Karen, I cant give you advice in relation to your situation as you are not my client, however, treatment for fungal infections is different to treatment for mould. It would be important to take the VCS (which you can do online and costs $15) to see if this is an issue for you.

      • Karen Allen

        Thank you so much, Alison. That made it simple. I like simple. :0)

  • Angela Standley

    What HLA DQ genes/proteins exactly? Don’t we all have these genes but the actual proteins differ…can you clarify?

    • thanks for asking – yes that is correct – there is great variability and Dr. Shoemaker has found that certain HLA types are not able to present the correct protein to be able to create an antibody response to certain foreign toxins in the system. You need a coeliac panel via Labcorp in the USA or Sonic Labs in Australia to determine but once you have that you can see whether its lyme, mold, marcons susceptible etc. There is a complete interpretation table in the MIMS course.

      • Angela Standley

        That’s great thanks. I’ve had that panel run for another reason. There are other pathology labs that do it – I went to Douglas Hanley Moir I believe (NSW).

  • Catherine Kastens

    Hello,
    If someone has a fungal infection like histoplasmosis, would CIRS be a concern as well? Or, is something like that entirely unrelated?

    • Thank you for your question. I do not think you can assume that someone with a fungal infection also has CIRS especially if you do not have the debilitating symptoms and do not have mould exposure. I hope that puts your mind at rest.

  • Alana

    Hi Alison,

    What is your opinion on ‘breast implant illness’ and CIRS? Could my implants be poisoning me? Can I correct biotoxin illness, MARCoNS and CIRS and still keep my implants, or will my implants mean I will never move forward with my endeavours to regain my health?

    • Those are two different things. Breast plants can be problematic. That however is a separate issue to CIRS. Have you taken the VCS test?

      • Alana

        I have taken it and passed, although I’m not sure if I calibrated it correctly. If my silicone implants are only 4 years old and aren’t leaking, do you still think they can be problematic?

  • It is a mast cell stablizer. That is different to TH1 and Th2 dominance.

    • Ross

      thanks. I also read quercetin is better than cromolyn but quercetin also makes a lot of people ill. any idea why?

      • Not true. Cromolyn or Ketitofen is often better when nothing is tolerated – that is medication is better tolerated in sensitive people. Quercetin is also problematic with some snps. I don’t tolerate quercetin at all never have. Found this is also true in probably 25% of my client base.

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  • Jane

    Hi Alison – I am thinking of getting tested for CIRS…but I recently had celiac genotyping done with a doctor and it was negative. The results say “DQ2 and DQ8 – not detected”. Are these the same markers you refer to in your article? Does that mean I would be one of the 5% to have it, if indeed I have it? In other words, it would be rare? CFS for over 10 years and not winning. I have had several exposures to water damaged rental properties but I’m not sure that’s enough. How does one get tested? I did the online vision test and failed but I don’t know how reliable that is. Thanks, Jane

    • Given that you have CFS it would be worth getting tested further to rule it in or out. You can get tested via consulting a Shoemaker Trained doctor. with thanks Alison

  • Nicca

    Dear Alison
    Do you think it is possible that women can feel worse during the first half of the menstrual cycle due to CIRS? I have read that estrogen erases cortisol which can lead to more inflammation (cytokines). So, I guess that this could be the reason why I have kind of PMS in the first half of my cycle. But that is just my own logic. What do you think?

    • There are lots of reasons a person can feel wore during the first have of their menstrual cycle and the dutch cycle mapping test is the test to take. CiRS does not happen in isolation – it happens in the whole person. CIRS typically affects DHEA and testosterone.

      • Nicca

        Thank you, Alison for your response. So kind of you.
        Yes, I have done the dutch test three times within 3 years. All hormones are in a normal range. But CIRS is diagnosed.

        • If hormones are the main issue you can map the whole cycle not just do a test at one point in time with DUTCH. it is the better test when there are changes throughout the cycle.

  • Georgia Ridler

    Hi Alison, thanks for this post. I have ongoing and worsening respiratory issues and recently engaged Ecolibria to conduct a mould and moisture assessment in our home. Results revealed Very High Mold Ecology at >21,000 mold/cubic metre in our main bedroom. The only visible mold is on Windows (glass & frames). Should I be getting a mold remediation company to clean the windows? If yes, can you recommend certified professionals in Australia? Or point me in the right direction? I have commenced the MIMS course but not up to the remediation section yet?

    • it sounds like you have had air testing done? If so i would recommend in follow up the ermi test (via mould lab). You definitively need to remediate any water damage and also any mold. It would be best to get thorugh the mold course so you can work out what is what and be able to supervise people. It is difficult for me to provide detailed guidance. You may also want to call mould lab and speak to david and ask him who in your area is getting a low ermi scores on retesting. I used amcozone for cleaning (not building repairs) and was very happy. You can self-remediate if you are well enough to do so 80%/20% vinegar solution. Its complicated. do yourself a favour – get through the course. It will save a lot of headaches.

      • Georgia Ridler

        Thank you, what an angel. Yes air testing done. I was just looking at AmcoZone website before you responded. Back to the course!

  • Jeffrey Stone

    Hi Alison!
    Just reading today – regards the low Amylose Diet oh gosh I am not certain I can restrict any more foods! I have yet to talk to my Dr. I was only at her office on Saturday with a CIRS diagnosis. I am currently doing AIP/Low Histamine – this is going to be incredibly challenging if I have to discontinue root veggies as well…. I believe you are low histamine diet as well. How have you fared by implementing the low Amylose diet? Not sure why this is showing up as Jeffrey – this is Ann 🙂