How Do You Get Diagnosed with CIRS?
What Most Doctors Miss
*Note: this blog was written by me, Mark Volmer. All spelling mistakes, misquotes, errors, and omissions are my own doing. It is not AI generated.*
I want to start with something that happens on a regular basis. Diane came into my office carrying a 3″ binder of test results and a look I recognized immediately. That particular combination of exhaustion, quiet desperation, and a tiny sliver of hope that maybe, just maybe, I could be the one to figure out her case. That sliver of hope is something I cherish. I protect it. And I nurture it.
When you treat CIRS, hope is so very important. But it needs to be an honest, sincere and grounded sort of hope. It’s hope, not hype. This is an aside, but I couldn’t resist writing it. In your quest for the right practitioner, make sure s/he inspires hope.
Back to Diane, she had been to her family doctor, two internists, a rheumatologist, and six naturopaths. She had normal CBC panels, normal thyroid, normal CRP, normal ferritin. She had been diagnosed with fibromyalgia, then chronic fatigue, then anxiety. Naturopaths treated her for candida overgrowth, adrenal fatigue, hidden parasites, reactivated Epstein Barr, and elevated urinary mycotoxins. She had tried six different medications and north of sixty different supplements, none of which touched her symptoms.
Before she sat down, she said:
If you can’t find anything either, I don’t know what I’m going to do.
I found something. It was CIRS. Her labs had been perfectly normal throughout because every practitioner before me had been ordering the wrong tests.
This is the story I want to tell you today. Not just what the right tests are, but why the wrong ones get ordered, what the Shoemaker diagnostic process actually involves, and how to protect yourself from testing approaches that look legitimate but lead nowhere.
Why Your Labs Always Come Back Normal
Let me be direct about something that I think matters enormously: your labs coming back normal does not mean nothing is wrong. It means no one has ordered the right labs yet. If you look in the wrong places, you’re not going to find anything wrong.
Conventional blood work is designed to detect conventional problems. A complete blood count finds infection, anemia, clotting disorders. A metabolic panel assesses kidney and liver function. CRP and ESR catch generalized inflammation. These are excellent tests for the conditions they were built to find.
CIRS is not one of those conditions.
CIRS is a dysregulation of the innate immune system not the adaptive immune system that standard antibody tests are designed to measure. When mold toxins enter the body of a genetically susceptible person, the innate system gets lit up and stays in overdrive. But it doesn’t generate the antibodies, the elevated CRP, or the abnormal cell counts that conventional tests are looking for.
This means that a person with CIRS can walk out of a routine blood draw with a completely normal panel. I have seen it hundreds of times. It is not the patient’s fault, and it is not the doctor’s fault. It is a mismatch between the diagnostic tools and the condition being missed.
The fix is not running more labs. It is running the right labs.
How CIRS Is Actually Diagnosed: The Three-Tier Framework
Dr. Ritchie Shoemaker developed a three-tier diagnostic framework for CIRS that integrates clinical history, objective screening, and laboratory biomarkers. All three tiers matter. You cannot skip to the bloodwork without the foundation beneath it.
Here is what that process looks like in practice.
Tier One: The Foundation
Before any testing begins, three things need to be established.
Exposure history.
- CIRS does not develop out of thin air. There must be a documented history of exposure to a water-damaged building, a tick bite, harmful algal bloom exposure, or another recognized biotoxin source. I spend a lot of time on this in intake appointments. I ask about every home, school, and workplace the patient has spent significant time in. Mold hides. It grows inside walls, in HVAC systems, behind bathroom tile, in basements. Most people who live in water-damaged buildings have no idea they do.
Ruling out other causes.
- Before CIRS can be confirmed, I need to be confident that another condition isn’t driving the symptoms. This means checking thyroid function, celiac antibodies, iron studies, and other basic markers. CIRS is the explanation for many patients who’ve never been properly worked up but it needs to be the right explanation.
- Fortunately, most people have done a TON of bloodwork before I meet them. In said case, a robust differential diagnosis has already been done.
Symptom cluster confirmation.
- Dr. Shoemaker’s published research identified 37 symptoms organized into 13 clusters that characterize CIRS. For a preliminary diagnosis, at least 8 of those 13 clusters need to be present. These aren’t vague, overlapping complaints. Together, they form a specific, reproducible pattern that has been validated across thousands of patients.
If all three of these are met, we move to tier two.
Tier Two: Objective Screening and Biomarkers
This is where the actual testing happens, and where most physicians never go. I don’t recommend starting with bloodwork either. There’s little sense in running costly CIRS bloodwork on patients that have no history of exposure and don’t meet the minimum required symptom clusters. I recommend bloodwork only after having an initial conversation with a patient to ensure their case sounds CIRS-y.
At least three of the following criteria need to be positive for a CIRS diagnosis to proceed.
1. Visual Contrast Sensitivity (VCS) testing
- This is the screening tool I use with every patient I suspect has CIRS, and it never stops impressing me with its clinical utility.
- The VCS test is a neurological screen that measures your ability to distinguish between shades of grey. It sounds simple. What it is detecting is something quite specific: biotoxins impair blood flow to the retinal nerve within 24–36 hours of exposure, which disrupts contrast perception in a measurable way. The retina, as Shoemaker’s collaborator Dr. Hudnell described it, is essentially a window into the brain and biotoxins affect both.
- The VCS test carries a 92% accuracy rate based on data from tens of thousands of patients. When a patient presents with 8 or more symptom clusters and fails the VCS, the probability of CIRS is 98.5%. That is a more accurate screening predictor than many tests considered routine in conventional medicine.
- It can be taken at home at survivingmold.com in about 10 minutes. It is inexpensive. And it tells me within minutes whether we should proceed to the full diagnostic lab panel.
- I often incorporate VCS testing into tier one. If a patient has a failed VCS and positive symptom clusters, I feel very confident to recommend bloodwork.
2. HLA-DR genetic testing
- Research published in peer-reviewed literature confirms that approximately 24–25% of the population carries HLA-DR gene variants that impair the body’s ability to clear mycotoxins. These variants prevent the immune system from properly tagging biotoxins for elimination, leaving them to circulate and drive ongoing inflammation.
- This test is important for two reasons. First, it confirms the genetic mechanism that explains why a patient gets sick when others around them don’t. Second, it guides treatment expectations. Certain haplotypes respond differently to the protocol, and knowing a patient’s genetic profile allows me to anticipate and plan accordingly.
3. Elevated MMP-9
- MMP-9 (Matrix Metalloproteinase-9) is an enzyme that breaks down extracellular tissue. In CIRS, macrophages responding to chronic innate immune activation release MMP-9 in excessive quantities. Elevated MMP-9 drives inflammation into the brain, lungs, joints, and muscles. This explains why so many of these symptoms appear together. It is one of the most consistently abnormal markers in the CIRS panel.
4. ACTH/Cortisol imbalance
- Early in CIRS, both ACTH and cortisol are often elevated as the body mounts a stress response. As the disease progresses without treatment, both markers tend to fall.
- Before getting a CIRS diagnosis, many patients have been told they have cortisol anomalies. Be it adrenal fatigue, hyper-cortisolism, or a disrupted cortisol rhythm. But remember, these are symptoms of CIRS. Taking supplements to raise/lower cortisol are not going to solve for CIRS. We need to address the underlying exposure and inflammation first.
5. ADH/Osmolality imbalance
- In most CIRS patients, antidiuretic hormone (ADH) runs low while osmolality runs high. This dysregulation drives symptoms that patients rarely connect to immune dysfunction: excessive thirst, frequent urination, and the strange phenomenon of static shocks that so many of my patients mention almost apologetically, thinking it sounds too weird to be meaningful.It is meaningful. It goes in the chart.
6. Low MSH
- Melanocyte-Stimulating Hormone is low in approximately 95% of CIRS patients. MSH is a master anti-inflammatory neuropeptide. When it drops, the body loses one of its primary brakes on the inflammatory cascade. Low MSH also explains the downstream disruptions in sleep, pain perception, pituitary function, and gut integrity that complicate so many patients’ pictures.
- Check out the biotoxin pathway here. Notice ALL the symptoms caused by low MSH:
- sleep disturbances
- chronic pain
- GI problems
- MARCoNS colonization
- And more
7. Elevated TGF beta 1
-
Transforming Growth Factor Beta-1 is an innate immune cytokine that plays a paradoxical role in CIRS, it is normally anti-inflammatory, but when chronically elevated, it drives autoimmune-like activity, impairs T-regulatory cell function, and contributes to neurological and respiratory symptoms. Elevated TGF-β1 is one of the three primary inflammatory markers Shoemaker identified as defining the CIRS biomarker fingerprint, alongside C4a and MMP-9.
Tier Three: Treatment Confirmation
The final diagnostic criterion is treatment response. When the Shoemaker Protocol is applied correctly and in sequence, CIRS patients experience measurable improvement in both symptoms and lab values. VCS scores improve. MMP-9 falls. MSH rises. Patients who were bedridden start functioning.
A 2024 peer-reviewed literature review published in the Annals of Medicine and Surgery concluded that the Shoemaker Protocol is the only treatment in the published literature with documented clinical efficacy for CIRS. That treatment response confirmed in both the patient’s experience and their objective biomarkers is itself part of what solidifies the diagnosis.
Diane responded. By month three, her VCS had improved. By month six, her MMP-9 had normalized and her MSH had climbed out of the critically low range it had sat in for years. By month nine, she described herself as “a different person.”
The Test You’ve Probably Already Seen: Why Urinary Mycotoxin Testing Doesn’t Work for CIRS
Over the last few years, urinary mycotoxin testing has become increasingly common. It is marketed as a straightforward way to test for mold exposure. Simply send a urine sample to a lab, get results. It is cheaper and more accessible than the Shoemaker biomarker panel, and it feels intuitively logical.
I fell for it. I was frustrated with the complex handling requirements for CIRS testing. And when urinary mycotoxin testing burst on the scene, I was sold. Simple, straightforward, logical. I thought we had a major breakthrough in CIRS testing.
Sigh… I was SOOOOO wrong.
Ritchie yelled at me. Told me I was practicing junk science. Then to rub salt in the wound, he published this paper. I’ll save you the read… it says these tests measure the presence of mycotoxin metabolites in urine. But mycotoxin metabolites appear in urine primarily because of dietary exposure: grains, corn, peanuts, coffee, chocolate. Studies have found detectable mycotoxins in the urine of healthy controls with no mold exposure history in 60–100% of samples. The test cannot distinguish between what you inhaled from a water-damaged building and what you ate for breakfast.
A further problem: patients with CIRS often have impaired mycotoxin elimination due to their HLA-DR genetics. This means some of the sickest CIRS patients will test negative on urinary mycotoxin panels. Because their bodies can’t clear the toxins efficiently enough to show them in urine. And someone with no illness at all may test positive because they ate peanut butter that morning.
More importantly, urinary mycotoxins have NOTHING to do with CIRS. CIRS is an illness characterized by innate immune system activation and mitochondrial suppression. Even if urinary mycotoxin testing could reliably tell us about mold exposures (it can’t), it still tells us nothing about mitochondrial function and ongoing innate immune system inflammation.
AND… most CIRS cases are caused by endotoxins and actinomycetes anyways. They aren’t even caused by mold!
I am not saying this to dismiss anyone who has pursued this testing. I understand why people do. I am saying it because I have watched patients spend thousands of dollars on urine mycotoxin panels, get told their levels are elevated, undergo aggressive antifungal protocols that are not indicated and remain just as sick as when they started. Because the wrong question was being asked.
The right question is not whether mycotoxins are present in your urine. The right question is whether your immune system has been knocked into a chronic inflammatory state by biotoxin exposure. That is what the Shoemaker diagnostic process answers.
Finding the Right Practitioner
I want to close with something practical, because I know that for many people reading this, the next question is: how do I find someone who knows how to run these tests?
The honest answer is that it takes some effort. Most physicians, including most functional medicine practitioners, have not been trained in CIRS diagnosis. Many have heard of it but don’t know the specific lab panel or how to interpret it in the context of the three-tier diagnostic framework.
What you are looking for is a Shoemaker-certified practitioner: a clinician who has completed Dr. Shoemaker’s certification program and is trained in the protocol from diagnosis through treatment.
At Flourish Clinic, this is what we do. We take the time to go through your full history: every building, every exposure, every diagnosis before we order a single test. We use the full Shoemaker diagnostic framework. And we interpret results in context, because a low MSH sitting next to an elevated MMP-9 and a failed VCS test tells a story that any one of those markers alone cannot.
If you suspect CIRS, start with our free mold illness quiz to see whether your symptom picture fits. If it does, book a discovery call. You don’t have to have all the answers before you reach out.
You have been looking for this long enough. Let’s find it together.
Mark Volmer, FMP, is a certified Shoemaker Protocol practitioner and Clinical Director of Flourish Clinic in Cochrane, Alberta, and one of only two certified Shoemaker Protocol practitioners in Canada.