Chronic Inflammatory Response Syndrome (CIRS) — Never heard of it, neither have you (probably)
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You’ve likely never heard of Chronic Inflammatory Response Syndrome (CIRS), and you’re not alone. Despite affecting an estimated 25%-30% of people, it’s not a well-known condition, and that’s part of the problem.
For this group of people, our bodies don’t have the ability to detox itself from biotoxins. Most normal people can clear the biotoxins just fine on their own. CIRS is the condition when your body doesn’t have this functionality. The functionality can be complete broken, degraded, or just on pause.
Some people describe this as their insides being on fire all the time. The symptoms come in all shapes and sizes and span a vast array. It is very common for a symptom (or 2, 3, or more) to be diagnosed and treated separately.
CIRS is triggered when we’re exposed to certain biological toxins. Ever come across mold in your home? That’s a prime example. These toxins provoke a long-term inflammatory response in our bodies. Now, inflammation is usually a good thing — it’s our body’s way of protecting us. But when it becomes a long-term, or chronic, response that doesn’t turn off… That’s where we run into trouble.
For most of the population, encountering biotoxins is not a huge deal. Our immune systems kick in and get rid of them for us. That is how it is supposed to work anyways. For the affected part of the population, we have specific genetic haplotype(s), or traits, that makes us more susceptible to becoming ill as result of biotoxin exposure. The offending biotoxins and symptoms are different for everyone. Later, I will take you through my specific case.
If you’re living with CIRS, you could be dealing with a wide variety of symptoms. Fatigue, headaches, weakness, aches, memory problems, etc.… — the list goes on and on. And because these symptoms are so common, it’s easy for CIRS to be mistaken for something else. Every one of these symptoms can be targeted directly by conventional medicine and for the most part, the symptom will at least somewhat get better. It doesn’t treat the root cause though. We are still sick under the hood, and it will only become worse with time.
Often traditional medicine will treat the symptoms and cover up, or just never find the root cause of the underlying issue. CIRS diagnosis and treatment often takes place in the context of functional medicine.
Why are some people susceptible while others are fine? First a bit of technical explanation…
Human Leukocyte Antigens (HLA)
HLAs are specific variations in our DNA that can make us more susceptible to certain conditions.
We inherit our HLAs from our parents. We get one from each. These are necessary for our bodies to clear biotoxins via the adaptive immune system. T and B cells take care of this clearing process.
When we have certain defects in our HLAs we are unable to clear at least some of the biotoxins that we encounter or are exposed to in life. Without the ability for our bodies to clear these biotoxins, they accumulate over time and build up. The toxic load builds up and eventually presents as illness. You can look at this like having a bucket of inflammation. It is all fine, until it isn’t and the bucket overflows. I will come back to this bucket analogy later.
The chronic inflammation we experience is due to the biotoxins that we can’t clear. We can clean up our diet, in some cases even eating an ultra-strict carnivore diet of only beef, salt, and water, but our symptoms persist.
My Case
I will use myself as an example. My recent CIRS tests resulted finding out that I had 2. I had 4–3–53 for “multiple susceptibility” and “Chronic Fatigue”, and 13–6–52C for “Mold”. Lucky me, when I am exposed to mold, I get fatigued, and then don’t have energy to figure this stuff out. On top of that, the multiple susceptibility one means I may have multiple biotoxins that cause me issues. Oh well, I can feel sorry for myself tomorrow. Today is not the day though. Let’s continue…
This means I am more susceptible to mold illness, or getting sick, having chronic symptoms when exposed to mold. My body is not able to clear the mold biotoxins like a normal person is.
The chronic fatigue HLH means that I am more susceptible to having chronic fatigue as a symptom when I am exposed to mold. This doesn’t mean 100%, it means “statistically increased” — chance.
I find it fascinating that a blood test can actually tell you what you are susceptible to in regard to symptoms. Now, yes, this is obvious now, but up until this point I always blamed all my issues on an array of other things up to and including diet.
At one point in my life, I thought I was having reactions to the “vegetable capsule” of my Vitamin D supplements, so I started opening them up and mixing with water. I think that is a bit over dramatic now, but at the time it was the only thing that made sense since I (then) was eating 100% grass fed, grass finished beef, salt, and water. It wasn’t possible I was reacting to any other food because I wasn’t consuming anything else.
Nothing ever made sense to me, even when I was diagnosed with Multiple Sclerosis (MS). I did hundreds of hours of research but was never able to find compelling info that MS was the cause of my issues, and not just a symptom cluster (called MS) because of my issues. -Especially since I have had a let’s say, 80% clean keto/carnivore diet for years now.
I am still searching for answers. Right now, though, I think my MS is actually just a cluster of symptoms that categorically fall into MS and those symptoms are actually all caused by something else. I know it sounds backwards, but the forwards version just doesn’t make sense of how things should work.
If your vehicle is backfiring, you don’t just put tape on the exhaust, throw in some additive, and say the car has “backfiring”. You adjust the timing, ignition, and fuel systems until it is fixed. Then the backfiring becomes a annoying memory.
For me, diet is the fuel system, timing is the lifestyle (sleep, hygiene, stress control). I compare the car’s ignition system to my immune system’s response. The biotoxins have me all sorts of clogged up and my ignition system is firing out of order currently. I say good, it is something I can fix.
How is that for some lightyear-distance extrapolation and analogy? Of course, my thought process is much deeper than this, but for the sake of simplicity, here we are.
Because I love irony, there is a MS HLA for “Multiple Sclerosis”, but I didn’t test positive for it even though I have been diagnosed with MS. This is even more reason I am relentless in getting to the root cause of my issues. I can talk about this and my thoughts for hours, but it is hard, at least at this point in my journey, to not make it sound like a rant. Maybe a rant post in due time after I heal. I don’t want to spend energy on it now.
To my two best buds, y’all are going to hear the rant, there might even be some swear words in it just for you. You know what I am talking about.
My CIRS Test Results
I did my testing through Nutrition with Judy. They offer comprehensive testing packages and guide you through the process. I found NwJ a few years back on some podcasts and have been following ever since. I had other suspicions about my health at the time, so CIRS wasn’t on the forefront of what I was searching for. I had some other things to rule out or confirm first.
I signed up with NwJ and did the testing. CIRS is very confusing at first, but NwJ really guides you through everything and makes it make sense. They have tons of videos on their YouTube channel too.
A bunch of blood vials, and several scrolls of the screen with my phlebotomist and I was done with the blood tests. And hey, they only had to stick me twice. Not too bad. I even got a complement for “having the nicest veins they had seen in a while”.
I received my test results in about a week and Nutrition with Judy provided analysis on them.
I ended up with:
2 HLA-DR Genetic types
13/13 symptom clusters (I was in the minority of people able to pass the VCS test but still have CIRS)
A whole slew of other markers way out of whack.
The main out of whack markers I wanted to talk about are: MMP-9, MSH, TGF-b1, and C4a.
Matrix metalloprot-9 (MMP-9)
My MMP-9 was 636 ng/mL. This is high, the normal range is 85–332.
High MMP-9 will increase blood-brain barrier permeability. Essentially the shield my brain possess is not operating at 100%. It is caused by white blood cells activating the MMP-9 enzyme. This causes holes in the endothelial cells’ membranes.
I don’t know about you, but that sounds bad. Maybe that is an understatement. Either way, stuff leaking into areas around my brain that shouldn’t be there is not good at a minimum.
Melanocyte Stimulating Hormone (MSH)
For me, this is the fun one. I have always had trouble fasting, as I always have hunger pangs when I do. I don’t overeat and do get full, but going days without food, makes me grouchy.
My MSH level was < 8 pg/mL. This is very low. The normal range is 35–81.
MSH is partially controlled by leptin. Yes, leptin the satiety hormone. The increase in cytokines from biotoxin illness suppress MSH. Hunger is not the only mechanism in the body MSH controls. Several mechanisms to name are:
Melatonin production — related to sleep regulation.
Androgen production — related to testosterone production — yikes, I really need to fix this before it’s too late!
MARCoNS — the body losses the ability to fight it so it just sticks around. Let me know if you caught that pun.
Immune system dysregulation, leading to increased autoimmunity.
Trans Growth Factor Beta-1 (TGF-b1)
My level was 4606 pg/mL. This is high. The normal range is < 2380.
High TGF-b1 is one of the hallmarks in CIRS and immune system over reactivity. There are also some links between high TGF-b1 and Multiple Sclerosis (MS).
This doesn’t surprise me since it checks multiple boxes for my symptoms and there are even more symptoms associated with high TGF-b1 that I possess that include:
tinnitus (constant ringing in ears)
various autoimmune issues: MS, dermatitis, GI inflammation, possibly my migraine headaches
Complement C4a (C4a)
My results were 4345.9 ng/mL. This is high as the normal range is 0–650.
C4a is a mechanism in your body that marks pathogens for the rest of the immune system to deal with. C4a doesn’t dispose of pathogens, it just tells the immune system where they are, and brings attention to them. It is a sort of targeting system.
When there is inflammation present this system can become over engaged and cause too much to be targeted. Your immune system becomes overactive and starts attacking marked cells when it shouldn’t have had them marked in the first place. This can exacerbate autoimmunity.
Visual Contrast Sensitivity (VCS) and Symptom Cluster Assessment
The visual contrast sensitivity test is a test you do at home on your computer. It tests your ability to distinguish between light gray and white at decreased brightness and contrast. It is a test of visual sensitivity. At the technical level, it is testing your optic nerve’s neurological function. Having biotoxin illness will degrade this mechanism and you will be unable to see the small differences presented in the test.
The VCS test is the first place someone with strange unexplained symptoms should go.
This test is a great simple, easy, cheap test to get an idea if you may be suffering from CIRS. At the time of this writing the test is $15 and can be found at https://www.vcstest.com
However, this test is lopsided. If you fail the test there is a high likelihood that you have CIRS. It is in the 90–95% range. On the other side, there is a small percentage of people with CIRS that can pass the test. Guess which group I am in? I am glad life isn’t straight forwards, or it would be boring.
I passed the VCS test. Great, so now what?
Well, there is a second part of the VCS test, which really has nothing to do with vision directly. It is called the Symptom Cluster Assessment.
This is a group of 13 clusters of symptoms that you self-identify on. There are 37 symptoms throughout these groups. If you fall into 8 of 13 groups, then statistically, you will go on to test positive for CRIS with blood tests. 6/16 is also of concern and shouldn’t be ignored. Currently 8/18 is “the line”.
For people that fail the VCS test, it will become a great tool to track progress, as you can re-test and see improvement (or worsening) as time goes. For people that pass the test initially and still have CIRS, there isn’t much point in re-testing the visual part as your body has compensated, or you are not visually affected (as much).
This is the actual result on my test that I received:
The combination of the VCS and the Symptom Cluster Assessment are a great and inexpensive way to get sort of a pre-evaluation if you are on your health journey, have unexplained symptoms, and are looking for answers.
Mold, yuck!
The 5 most common types of toxic mold are: Stachbotrys, Penicillium, Fusarium, Aspergillus, and Cladosporium. There are tons of other specific types of molds, but these are the most common and toxic to people with systems that can’t clear these biotoxins.
Stachbotrys for example is the “black creep” type that is commonly found in water damaged areas of buildings. You will know it when you see it. It is normal to feel repulsed by it and this visceral reaction is warranted. It’s your body screaming at you to stay away from it. If you are like me, you ignored mold all together until about 1 month ago. This takes about two weeks of moisture to grow.
Some mold infections in homes can be surface or deep in the materials. Surface mold can be dealt with by removing it from the surface it is on. Mold can also infiltrate deep into the walls of your home or building. Mold can start growing into the wood within the walls. It will grow into drywall, boards, and insulation. This cannot be cleaned away and building materials must be replaced.
The mold may not be visible. It can be behind baseboards, and/or behind drywall. In this case removal of building material may be necessary for proper remediation.
Treatment and the Dr Ritchie Shoemaker Protocol
Currently, the only clinically proven method to treat CIRS is the Dr Ritchie Shoemaker Protocol. Dr. Shoemaker originally found a link between an algae bloom and resulting sickness in his community. More information about Dr. Shoemaker and the Shoemaker Protocol can be found at https://www.survivingmold.com/.
There is nuance to every step, and some people will not need every step. Lucky there are tests to confirm each step of the way. The general steps (in summary) in the protocol are:
Remove yourself from any current exposure. This is often the toughest part, but at the same time is the most important. This can include, cleaning, remediation, and/or relocating. Often remediation and cleaning can take professional services and can be the most expensive part. This is especially important if you have ever noticed that you are not ill after being on vacation, then become ill again a few days after returning home.
Detox your body from the biotoxins utilizing binding medication. The two prescription medications are Cholestyramine and Welchol. These are old-school cholesterol lowering medications. We do not take these to lower our cholesterol; instead, we take them specifically for the electrical charge that binds to the mold biotoxins. It does this by preventing bile (that grabs and holds the biotoxins) from being reabsorbed in the body and causing your body to excrete it via your stool. There are non-RX binders out there but they are less effective. They are a good place to start while waiting for a CIRS doctor and prescription binder. The one I started taking is called Mycobind. It is made from okra and beets. It is a powder that you mix with water and has almost no taste.
Testing and eradication of MARCoNS. Many of us are infected with Multiple Antibiotic Resistant Coagulase Negative Staph (MARCoNS). This is an infection in our nasal passage and our body has no ability to rid itself of this bacterial infection. MARCoNS can also suppress your MSH. MARCoNS is fought off using prescription and nonprescription nasal sprays.
Correcting of serum anti-gliadin antibodies levels by avoiding gluten. Sometimes by the time someone figures out they have CIRS, they are already on a Carnivore diet. Everyone is different and giving up gluten may be easier or harder for different individuals. For me, I haven’t had gluten in over a year, so I think I will most likely be ok on this step.
Correcting of Androgen levels. This involves balancing DHEA and Testosterone. It is recommended to NOT try and fix this with exogenous hormones (HRT) from the start. This will most often start correcting itself due to the previous steps, and with the addition of VIP in the last step.
Correcting of Serum hyperosmolality. This will be retested ever two weeks until levels have been corrected. There are RX paths to help with this but is often corrected via the previous steps as healing continues.
Decreasing Matrix Metalloproteinase 9 (MMP-9) levels. This is a marker of inflammation. Getting this under control will mean that enzyme levels of inflammation (at the cellular level) will get you functioning more correctly in regard to having a regular innate immune response. This is fixed via a low-amylose diet, and high dose DHA/EPA supplementation.
Correcting of Vascular Endothelial Growth Factor (VEGF). This will improve oxygen delivery to your cells. This is done through a low-amylose diet and Omega supplementation with a recommended 2.4 grams of EPA and 1.8 grams of DHA per day to start.
Correcting elevated C3a. This will help increase oxygen delivery to your cells and aid in decreasing inflammation.
Correcting elevated C4a. This will help increase oxygen delivery to your cells and aid in decreasing inflammation. This was the targeting system I previously talked about. Fixing this makes it more precise and accurate (less prone to error and over targeting).
Correcting elevated Transforming Growth Factor Beta 1 (TGF-B1). This will restore immune system regulation and balance. Medication and VIP in the next step help correct this if it is still out of whack at this point.
Correcting of low Vasoactive Intestinal Polypeptide (VIP). This will restore neurological regulation to reestablish normal function of your system. This step will go a long way in getting you back to “normal”. This is the final step and the target of people being treated with CIRS. Getting to this step and achieving steady normal levels is sometimes considered the “proverbial finish line” — although we all know we are never done in this journey. There are reports of people saying they feel “100% better”, and then start VIP, and it takes them to a new level of feeling “100% better” again. Everyone will have different experiences with this.
Nutrition with Judy
Nutrition with Judy, Cheryl, thank you. I am lucky to know you. I have been searching for 10 years at this point trying to figure out what is wrong with me. I have been down every rabbit hole you can think of and sat with countless doctors. Cheryl, I appreciate that you have the same attitude as I do. Your candid, to the point style vibes well with me. Like you, I do not have time to beat around the bush when it comes to my health. Thank you for the guidance so far, and I look forward to continuing this journey.
From the very beginning I was suspicious the idea that my issues were genetic. I don’t believe my issues are genetic. I think often we are told that our health issues are genetic. That there is nothing we can do about them and just take a prescription medicine. I think that is nonsense. For some people, fine, that is a path forwards, maybe your situation warrants medication. We all get to make our own decisions in life depending on our situation and knowledge. I have had a lifetime of migraine headaches, and autoimmune problems. My doctors always tell me its genetic.
In Late 2022 I was handed a diagnosis of Multiple Sclerosis (MS). They basically said they don’t know what causes it. They said take this medicine and we will hope it works in the future. My Twitter (now X), and YouTube feeds were bombarded with advertisements for MS immune suppressing drugs, weeks before the actual diagnosis. I don’t think any of my issues are genetic unless you consider that my parents raised me with the same environment and lifestyle as them, so by association, I should/would exhibit some of the same health ailments as my parents. To me this makes a lot more sense that constantly being told things are “idiopathic”. I think my body responds to toxins and inflammation with clusters of symptoms that are categorically MS. That is fine to have a label on it, it helps abstract groups of information. I am here to find the root cause though.
CIRS has a genetic component, but it is not something you “catch” from your parents. You don’t “catch” CIRS from your parents, you just end up more susceptible to certain biotoxins than normal people because your system is out of whack and needs correcting. I am grateful this is something that can be fixed, and for all the work of those that came before me to actually figure out what it is and how to fix it. I am just along for the ride, learning and doing as I go to give myself and my family the best chance at tomorrow as possible.
I have learned so much in the past years, it seems there is a high correlation of people with MS having CIRS. Now, to be clear, I am not a doctor, and am not 100% sure as only time will tell. But currently I think having CIRS, and because there is a diagnostic test to confirm it, that my MS is a symptom and not a cause of my issues. I am in hope that after treating my CIRS and ridding myself of these toxins that MS will become nothing more than an annoying memory for me. Mold isn’t the only toxin involved in CIRS. It is just the first to deal with if you test positive for it. If healing from mold doesn’t “fix” me, the next items on my list to tackle are Lyme, Actinomyces, and heavy metals.
If you have strange symptoms that no matter what you do, you can’t figure out, or inconsistencies in symptoms and treatments attempts, I highly recommend you look into Chronic Inflammatory Response Syndrome (CIRS). For lots of people down this rabbit hole, this is the key to restoring health and getting back to normal.
Take Care.
References and More Info
https://www.survivingmold.com/
https://www.survivingmold.com/docs/12_STEP_SHOEMAKER_PROTOCOL_FOR_CIRS.PDF
https://nutritionwithjudy.com/
https://www.myhousemakesmesick.com/hlacalc/details.php
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