CIRS - The Common Disease You've Never Heard Of
"Why am I so damn tired?"
Do you ever wonder this? You went to bed. You probably even slept. You certainly didn’t run a marathon every day for the past 10 years, so why are you so damned tired?
Got Any of These Fun Tag-A-Longs?
Total mush for a brain
Your neighbor’s name? Give me a sec, it might come to me.
Grocery list? Yeah, I had to write all 3 things down.
Where’s your cell phone? Looked for it for an hour – found it in my hand.
Keys? Forget about it.
Good luck reading a book or writing a term paper. No. Flipping. Way.
Headaches – like, always?
Shortness of breath – randomly?
Lightheadedness – sometimes when standing up, sometimes just for fun?
Heart palpitations – and not just when a zombie is breaking into your house?
Metallic taste in your mouth?
Abdominal pain? Diarrhea? Constipation? Sometimes both at the same time?
Sinus problems, vision problems, red eyes?
Difficulty regulating body temperature?
Frequent urination?
Crap for sleep?
Tremors, vertigo, electric shocks – perhaps every time you touch a door handle?
Ringing in the ears?
Muscle pain? Joint pain? Achy pain? Ice pick pain? Better at forecasting the weather than the National Weather Service kind of pain?
Sensitivity to light?
Sensitivity to sound?
Sensitivity to tampon commercials?
Sensitivity to foods, smells, chemicals, microwaves, cell phone towers – put you in a hypoallergenic bubble because you’re sensitive to pretty much everything sensitivity?
Have you been diagnosed with fibromyalgia, chronic fatigue, chronic Lyme, migraine headaches, or long COVID?
How about IBS, ADHD, MS, Parkinson’s, dementia (self-diagnosis works here too), depression, anxiety?
If so, I bet you have tried to fix it. You changed your diet a time or two. Gluten is supposed to be bad, right? Get rid of that. Cut out sugar, quit alcohol, stopped caffeine – switch gears - drank all the caffeine, went Keto/Carnivore/Paleo...? Do you wonder why no matter what you do to yourself, no matter what medications you take, regardless of how many millions of ‘vitamins’ you swallow, you just never seem to get any better?
Well, friend, you are not alone. You probably feel alone, but you most certainly are not. Lots of people walk around with lots of symptoms on top of being tired AF and have no earthly idea why. I suppose you could be crazy. You could just have my job. Or you just might be suffering from something else entirely. Perhaps a disease no one ever mentioned or tested you for.
You might be suffering from a condition called ‘CIRS’.
CIRS, or Chronic Inflammatory Response Syndrome, is a well-studied highly published, but poorly recognized condition that many people unknowingly suffer from. The absolute laundry list of symptoms that seemingly have nothing to do with one another can be the result of an underlying inflammatory condition that ends up causing a complicated malfunction of the immune system. People with this condition have often seen a bunch of doctors (like 10 or more doctors), had scads of testing done – I’m talking about ALL the testing (spoiler alert: results of said testing were “normal”), tried multiple medications, lifestyle interventions, diet changes and end up being diagnosed with a ‘disease’ they simply never seem to recover from.
To rub salt in the wound, the diagnosis is usually some garbage bag disease which just reiterates symptoms but means absolutely nothing. Something like ‘Irritable Bowel Syndrome’ – Yeah, you just said your bowels were irritable. Or ‘Chronic Fatigue Syndrome’ – Duh. That is why you went to the doctor in the first place. You’re tired. Wow. Revelational diagnosis.
In "Conventional Medicine Land", these ‘diseases’ are secret Morse codes meant to alert other doctors to patients they want to remove from their office as quickly as humanly possible. When translated to English, these medical codes actually mean ‘Alert! Crazy patient in need of big dose o’ Prozac’. Next patient, please.
These folks feel failed or abandoned by the system, just plain crazy, and 100% dead ass broke. Do you know what going to the doctor costs? How about 10 doctors?? The labs??? Lord. And then comes the self-doubt. Does their doctor even believe them? Their family? Their boss? Missed social engagements, countless ‘sick days’, hours on the internet trying to ‘figure it out themselves'.
People with CIRS are in a rough spot. They feel like shit. They feel treated like shit. Maybe they are shit?
Nope. They have just never been accurately diagnosed or treated. The truth is, CIRS is a real disease – a common disease. And here is the most important thing about it - the reason I’m writing about it in the first place. Ready? Here it is:
It. Can. Be. Cured.
Got your attention? OK – let’s dig in to what’s actually going on here…
CIRS is an illness that results in a SELECT GROUP OF PEOPLE from exposure to a biotoxin.
bi·o·tox·in
/ˈbīōˌtäksən/
noun
noun: biotoxin; plural noun: biotoxins
"in other cases involving mass deaths of large marine mammals, causes have included biotoxins from algae"
Use over time for: biotoxin
In ancient times, we called this ‘mold illness’ or ‘sick building syndrome’, but the list of these potential biotoxins is actually pretty long. It can be mold, but more commonly it results from the other microorganisms that live in the same environment as mold (i.e., bad behaving gram negative bacteria).
Who else is on the list? Tick borne infections (Lyme, Babesia, Bartonella), candida, fungi, dinoflagellates, endotoxin producing bacteria, spider venom, algae, and the new comer to the group: the Spike Protein of Sars-CoV-2.
CIRS is a multi-system (can affect all the organ systems), multi-symptom (can literally cause ALL the symptoms) illness that results from exposure to one of these nasty biotoxins in – and this is important – in genetically susceptible individuals. When exposed to biotoxins, these unlucky folks trigger an abnormal and unregulated inflammatory response not unlike the ‘cytokine storm’ everyone came to know and love during COVID19.
BUT – the cytokines here are produced by the other arm of the immune system (more on that in a sec). Over time, high levels of these circulating cytokines have loads of unfortunate downstream effects causing hormones and brain cells to go wonky. There are a few flavor presentations of this CIRS situation which is why some of the symptoms are pretty common (fatigue, cognitive, and neurologic issues), but the overall clinical picture can be extremely variable.
It might sound complicated. And, well, that’s because it is. Thankfully, the biotoxin pathway that explains it can be easily understood with this simple diagram:
Got it? Pretty straightforward.
“CIRS for Dummies”
When I first read the 'Biotoxin Pathway', I had a left eye twitch for a week. Here's that horrible, albeit useful, diagram for regular people (and no, you're not dumb):
Person X is born with genetic variant making them a potential target
Person X is exposed to a biotoxin
Person X tries to clear the biotoxin like a normal person, but because of this gene trait that we can easily blame on a parent, they just can’t do it
Biotoxin sticks around, accumulates
Biotoxin makes immune system mad
Genetically impaired immune system freaks out
Person X becomes a hot mess – exhausted all the time, bananas for brains, add your favorite toppings here: pain, peeing all the time, can’t sleep, gut’s a wreck, always cold, crying at tampon commercials, etc.
“Immunology for Dummies”
In the post COVID Era, you probably know way more about immune system function than you ever cared to. Immunology personally gives me night terrors. It’s horrifyingly complicated. We still don’t fully understand it. As this is the ‘Immunology for Dummies’ section, however, I think I can give you all the cliff notes version.
Think of your immune system as having two separate arms: the innate arm and the adaptive arm.
The innate immune system is what you were born with. Like a baby, it might be cute, but it’s kind of dumb. The innate system is your body’s first line of defense, but it is not particularly sophisticated. It’s general, non-specific. It doesn’t know if you are being invaded by a virus or a parasite, but it does know that neither are supposed to be there. The innate immune system responds with some yelling and hollering at foreign invaders, but its main job is to wake up the rest of the fire department. The team with the water hose and map of the fire is your adaptive immune system.
The adaptive immune system is what learns and develops over time. It makes specific B cells, T cells, and antibodies that remember things. You got Chicken Pox when you were 6 years old? Thanks to your adaptive immune response, chances are you are not getting Chicken Pox again. The adaptive system is trainable by previous exposure to pathogens and vaccination. It is this arm of the immune system that chases down invaders and takes them out with the trash. When we ‘measure’ the immune system with labs, we are almost ALWAYS measuring the adaptive side. ESR (erythrocyte sedimentation rate), hsCRP, and antibody titers are all produced by the adaptive immune system.
What does the immune system have to do with CIRS? Well, it just so happens to have everything to do with it. The Achilles’ heel of CIRS is an inability of the innate immune system to wake up the adaptive side. It yells, screams, and pulls the smoke alarm repeatedly, but the firefighters sleep right through it.
In these ‘genetically susceptible’ people I mentioned earlier, there is a disconnect between the innate and adaptive immune system responses. People susceptible to CIRS have recognition of ‘something bad is happening to me’ by the innate immune response, but they get little to no help from the adaptive side. As a result, biotoxin just keeps circulating and the innate arm of the immune system just keeps on yammering about it. End result? Biotoxin stays. Effective immune response fails. TGFB1 and MMP9 rise. VIP and MSH fall. ADH and osmolality become dysregulated. ACTH and cortisol stop talking to one another. And the London Bridge starts falling down, resulting in all of the ‘symptoms’ we see in CIRS.
History of CIRS
Once upon a time, a family physician by the name of Dr. Richie Shoemaker (who happens to be alive, well, and still working with CIRS patients) was going about his business of practicing medicine in a rural town along the banks of the Pocomoke River on the eastern shores of Maryland. One day in the mid 1990s, his rural town was suddenly ambushed by an invisible predator. A potentially lethal and never-before-seen algae-like organism called Pfiesteria was found to have infiltrated the surrounding wetlands and all 22 tributaries of the Chesapeake Bay. In 1996, this poisonous dinoflagellate made itself well-known to the marine life and the folks who lived there when it ‘bloomed’, blanketing the waters and the atmosphere surrounding the community with powerful and deadly biotoxins. Massive numbers of fish died, and an unusual illness began to manifest in the watermen who harvested fish and in many of the people living near the rivers and the Bay. Dr. Shoemaker himself was one of the people who became ill from what was later discovered to be exposure to biotoxins produced by the Pfiesteria algae bloom. Patients with similar symptoms caused by this biotoxin flooded his office with debilitating fatigue, cognitive deficits, immune system dysfunction, lung impairment, gastrointestinal disruptions – and impairment of visual contrast sensitivity (remember this for later). Once coined ‘Possible Estuary-Associated Syndrome’ by the CDC, this biotoxin illness – which can be triggered by any similar biotoxin in genetically vulnerable people - has now become known as ‘Chronic Inflammatory Response Syndrome’.
It took many years to sort this mess out, but as of today Shoemaker and colleagues have published more than 60 peer reviewed papers on the pathogenesis and treatment of CIRS.
How do I know if I have CIRS?
Do you have a potential exposure? Let’s be honest here, most of us do. Take a look at your house. Your place of employment. Since the 1950s, building construction fairly exclusively switched from using plaster to drywall - and in the name of energy efficiency they are tight tight tight. You are most likely breathing the same recirculated air all day everyday. What’s wrong with drywall? Nothing other than it gets wet! Mold and its co-conspirators absolutely love the wet. They also eat the drywall paper. And your dead skin cells - releasing poisonous biotoxins into your HVAC system all the while they do so. If you’re reading this from a WI address, you’ve probably had a tick bite sometime in your life as well. We live in a Lyme endemic state. But you were treated for Lyme, you say? Yeah – if you’re genetically susceptible, your adaptive immune system never got the memo.
Can you pass the Visual Contrast Sensitivity test? Many decades ago, the US military developed a vision test for their fighter pilots – not a visual acuity test, but a visual contrast test. The science behind this is super fascinating. Contrast detection is determined by the ‘rods’ in the back of your eye. The rods determine your ability to see an edge or differentiate shades of gray. For reasons we need not rabbit hole on now, the hysteria of the innate immune system seen in CIRS causes a temporary and reversible deficit in one’s ability to see contrast. This is an easy and inexpensive test that anyone can do at home. It costs $15 and takes 15 minutes to complete. If you can’t pass the VCS, think CIRS. https://www.vcstest.com/
Are you genetically susceptible? The genes identified and implicated in CIRS are the ones responsible for antigen presentation to the adaptive immune system (HLA). They live on chromosome 6. Approximately 20% of the US population have HLA gene haplotypes that make them susceptible to biotoxin illness. 20%!! That’s a big chunk of people. What percentage of people who get Lyme, go on to develop ‘chronic Lyme’? 20%. What percentage of people who live in water damaged buildings get sick from the water damaged building? 20% What percentage of people who had COVID went on to develop ‘long COVID’? 20%.
What is your innate immune system doing? Well, you don’t know if you don’t test it. Guess how often in my career I checked ‘innate immune system function’. NEVER. There are very specific, extremely well researched biomarkers (more than 30, to be exact) that have well established links to CIRS. Gotta have these tested - at least some of them, anyway. And I can pretty much guarantee, these are labs you’ve never had done before.
Recap: Do you have symptoms? Were you potentially exposed? Did you fail the VCS? Are you genetically susceptible? Is your innate immune system freaking out? If the answer is yes to all of these questions, we’re looking at CIRS.
How is CIRS treated?
Thanks to Shoemaker and colleagues, the treatment strategy has been well described. Once a diagnosis has been made, the main pillars of treatment are the following:
Remove the exposure/treat the infection
Bind the biotoxin
Correct the labs
Reset the immune system
Easy peasy. Ok – it’s a bit more involved than that, but those are the fundamentals. It’s been studied, reviewed, revised, refined. If followed, it works.
CIRS is a common but complicated condition. Many patients suffering from this disease are left feeling isolated, invalidated, and endlessly searching for answers. The fact that CIRS is not only identifiable but treatable should provide hope for the countless numbers of people affected by this debilitating illness. The realization that you're not alone, that your symptoms are not a manifestation of your imagination but rather a tangible, medical condition, is profoundly liberating for so many patients. The roadmap to recovery underscores the importance of accurate diagnosis, removal of biotoxin exposure, and rebalancing the immune system. This information should underscore the critical message that, despite being so sick for so long, healing is possible. For those grappling with the myriad symptoms of CIRS, let this post serve as a reminder that there is a way forward—a path out of the shadows of 'am I really losing my mind?' into the light of understanding and recovery. Armed with knowledge and the right support, reclaiming your health from the clutches of CIRS is within reach, offering a future where you can live free from the burden of unexplained illness.
Call our office to schedule an appointment with a provider if you think CIRS might be a root cause of your health issues.
920-737-1625
