Updated: Mar 8
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As I’m up at 2 am unable to sleep again today, I was inspired to start talking about the reality of living with biotoxin illness as a 4-3-53. Most of us when first presented with CIRS genetic testing go...4-3-fifty-whaaaat? I was the same. (Here’s a website to help you decipher CIRS testing results if your numbers look different: http://www.myhousemakesmesick.com/hlacalc/). So the scientist in me dug in a little further, and after reading Dr. Shoemaker’s book, Mold Warriors, I felt like I understood the basics and the history of the theory of biotoxin illness, aka CIRS (Chronic Inflammatory Response Syndrome), a lot better. He was the researching physician who was brilliant and brave enough to track down the reason behind many of his patients’ toxic illness, and discovered the debilitating, chronic effects mold can have on those of us who lack the ability to detox correctly.
Wait, you say you don’t want to read this awesome 400-pager? I really do recommend it. But if not, here’s the abridged version: We all have HLA genes that control inflammatory response in the body. Depending on the set you got, your ability to detox from biotoxins (mold and others, potentially including Lyme, which I have, and Bartonella, which I think made me extremely sick, but is really hard to diagnose, so I’ll never know for sure), is severely hampered. Normal people can tag toxins with the immune system and the body will get rid of them. Those of us who have these defunct HLA-DR genes, lack that essential detox ability, so toxicity builds up in our bodies over time, especially with acute exposure to certain toxic molds, and we get really, really sick. Once our immune systems are “activated” by exposure to these mold toxins, the inflammatory response triggered upon continued or reexposure is intense, causing all kinds of problems in the body. When trying to explain to the general public, I like to liken it in some ways to a peanut allergy - once your body has developed an inflammatory response to the triggering substance (mold toxins), reexposure will cause this cascade of awful symptoms again. However, unlike an anaphylactic allergy, CIRS sufferers have a completely different set of symptoms to deal with. In a way they’re worse because no mainstream doctor seems to know this paradigm and its causes and symptoms exists, and telling normal people you can’t go into certain buildings because they make you sick just makes you look like a self-imposed OCD leper - but hey, at least being in a moldy building doesn’t cause me to puff up and die. So I’ll count my blessings where I can find them!! But, on the other hand, if it did, I’m pretty sure we wouldn’t have doctors pooh-pooh-ing the (necessary) idea of getting rid of furniture from a water-damaged house when a child in that house keeps having obvious CIRS symptoms. (The stories I hear from other patients hurt my heart! Please somebody tell medical schools about CIRS, so doctors at least know it exists, ok? From my experience it’s far more common than you’d imagine!)
OK back to 4-3-53. Nobody likes being told they’re the “dreaded genotype,” right? Well guess what. I am. If you’ve found this page, you may be too. Ok, accept it if you’re 4-3-53, let it sink in. I’ll give you a moment. You deserve it. You drew a nasty short stick in the genetic world...and now it’s sunk in...let’s buck up and move on with our lives, because they’re still worth living!
From Dr. Shoemaker’s experience, you will quickly gather that he thought 4-3-53, or “multisusceptible” is the worst possible genetic card you could be dealt in mold illness - an inflammatory response to mold toxins that never turns off and causes severe symptoms upon any mold exposure for the rest of your life. In fact, his stories of not being able to help anyone with this particular HLA-DR genotype get well were quite disheartening!
A quick side story (but you’ll see, it’s related.) - We have an organic store near our house that specializes in helping people with allergies and other mold-triggered issues improve their lives, and the proprietress one time told me she was going to stop carrying a book because it was too “Shoemakerian” - she had unfortunately known someone who had committed suicide because he learned he was 4-3-53 and therefore believed he’d never get better, based on Shoemaker’s experience. If you’re 4-3-53, please don’t do that! It’s not a death sentence, and so much has been learned about biotoxin illness since Shoemaker did his initial work, as you’ll see, there are really amazing ways that you CAN get better.
A burning question I’m sure you have, is, “What are the symptoms of mold exposure I need to watch out for?” Here’s a quick rundown of what I get to experience as a reactive 4-3-53. We just had intense rain that exposed a water leak into our window that has likely been there (closed up and small) for a long time (the steel beam is quite rusted). When we opened it, within 24 hours, I was having very obvious (to me) mold symptoms. My exhausted husband tried his best to argue it was probably just in my head with the hope of saving the wall (until it rained again and showed the leak was obviously large now and needed experts to fix - don’t worry, it will get properly remediated), but I’ve been around the block enough times with my mold friends to know pretty quickly now when I’ve had an exposure, especially a bad one.
Here’s what it looked like:
- heightened heart rate that comes and goes, often triggered after eating a meal or when entering the moldy building
- sinus headache
- electric shocks when I get out of the car or when drinking water
- insomnia (awake, mind racing for 3 hours solid)
- goofed up water balance - I start to have to pee 4 times a night and drink water constantly
- nighttime eyesight gets blurry and it’s harder to read captions on the TV or signs while driving
- Astridian rash under my arms (I’ll talk more about using Astridian for detox in another post - it’s highly effective, post-mold exposure, to speed toxin detox through the skin, which causes a rash. This rash is an easy way for me to tell I’ve had a significant external mold exposure, now that my internal system has mostly detoxed from the mold I was carrying in my sinuses.)
- Digestive discomfort and issues if you’re not actively taking a binder (I have to take one daily still because of internal detox, but hopefully someday will be able to cut down to only when I’ve had a mold exposure).
- MARCoN activation in the nose, increased sores, inflammatory pain, and biofilms in the sinuses due to multi-resistant staph that just loves toxic environments. I’ll talk more in another post about how I have finally beat this awful set of symptoms that was constantly being re-energized by even a few minutes in a bad building.
- Dry mouth and sore throat.
- Itchy ears and a tiny bit of itching on the sides of my nose where I had eczema during our bad mold sickness - my skin still reacts in that place.
If I don’t get out of the moldy place quickly after these symptoms show up, they compound and get much worse as the body absorbs more toxin from the contaminated environment (you try not sleeping and drinking and peeing all night - even just that gets really old REALLY fast!). Because I have Lyme, the next thing on the list is the toxicity cuts out my immune system’s ability to keep the Lyme under wraps, so I’ll usually get a stinger of intense pain in the spot in my neck where the Lyme likes to hang out, followed by a week of not being able to move my neck (I’m on Antabuse right now for the Lyme, so this set of symptoms is greatly lessened. It likely won’t actually go away until I get the mold out of my inner ear though...so I’m being patient through it all - more for another post). Sometimes it’ll throw in inflammatory hip pain on the left side for good measure. If I weren’t on medication to prevent it, Epstein-Barr activation and Candida symptoms would follow. The toxic drainage down my throat on the left side due to all these lovely factors gets worse after a mold exposure and a bad sore throat ALWAYS used to follow (the bane of my existence for many years until I had sinus surgery). And then the worst is the food sensitivity caused by mast-cell activation that will start to creep in and if I don’t rotate foods (only eat each kind of food for about 1 day, then give at least a day or two off before having it again), I start getting inflammatory headaches caused by increased reactivity to all the foods my system got sensitized to when I was extremely sick living in a moldy house before.
See how debilitating a one-hour exposure to a moldy building can be to an activated 4-3-53? You can see why I stay OUT of buildings that make my heart race, if at all possible!!
Ok let’s get to the good news. It’s not a death sentence. It’s not even a life sentence (which I think that guy believed who committed suicide...honestly, living with this junk is pretty darn awful)! Have you noticed yet that I’m a 4-3-53 who is NOT freaking out about having a moldy cavern open to my house right now? (I’m really proud of that fact, btw - 2 years ago I would have been a complete anxious, debilitated puddle on the floor at even the thought.) Based on the symptoms I just described, and how they get worse with time, I should be at least a little worried, right?
The difference is Air Free. This air purifier is like none other on the market, and its existence has completely changed my existence!
Air Free is the reason I can stare at a moldy wall and say, ok, you’re moldy, but you’re not going to hurt me. Instead of fanning and filtering air, this little purifier unit heat-conducts it through a super-heated center, destroying mold AND its toxins, and getting rid of the little boogers that trigger the cascade of awful for us CIRS patients. When we opened the wall, we only had one unit in the room. It was obviously not enough. A sleepless night, 16 glasses of water, 8 trips to the bathroom and 4 shocks later, I went and got two more of our units from church (the building there gives me issues too, but I can handle not going to church for a couple of weeks until we get our house remediated), and with three units running in this 600sf room, there’s plenty of purifying power to get rid of most of the toxins from the air before they ever get near me, or my kids, or my couch, for that matter. It’s amazing - I don’t have to worry about protecting or getting rid of my furniture or other non-cleanable items (ever again) because of water damage in our house - thank you Lord (of all the stresses mold sickness brings to a family, that is the one that could have taken out my marriage if it were to happen again). And right now I’m having basically 0 symptoms from the open moldy hole in our wall (ok so I taped plastic over it, but still, it’s there, and would be killing me if not for the Air Free units in the room). Seriously they are a God-given gift, an amazing, extravagantly grace-filled answer to prayer.
As a 4-3-53, I’ve had to stop doing a lot of things and going a lot of places because the ambient bad air quality and residual mold toxins that simply exist as a matter of course in most buildings made me sick. Now, if I can afford an AirFree unit or two to place in that room I’m going to be in, the door to that social interaction is open again (as long as there’s not an active bad mold problem in the building) - another absolutely ASTOUNDING answer to prayer. I had thought those doors were going to be shut on the boys and me forever! I’m so glad that’s not the final word.
I love these units so much - they’re totally silent, small and portable, don’t take a lot of power, and REALLY clean toxins out of a room. The only catch is they say you have to leave them plugged in at least 24 hours for them to scrub the air in a room before they’ll give you protection. However, this latest experience showed me that with more units in a small space, you can cut that down significantly. I was feeling better only about 3 or 4 hours after plugging these bad boys in. And I suppose the other catch is that you need enough units to cover the square footage of your room, and if there’s an active mold problem or worse air quality for other reasons, you may need to double or triple up (one unit is supposed to cover 500-600sf, but clearly that wasn’t enough for this 600sf room with a moldy hole in the wall). As you may have noticed, unfortunately just lessening the toxin exposure won’t stop symptoms...you really need the air to be toxin-free to stay feeling good once you’re an activated 4-3-53. It’s a pain, believe me I know, but hey, it’s now a FIXABLE problem!! Hooray, and thank you Lord for giving us a solution that doesn’t ALWAYS require finding ALL the historic water damage in EVERY building and getting rid of EVERY LAST BIT of it (because let’s be honest, that’s completely, absurdly impossible in the real world).
You’ll notice I put my Amazon link above to the Air Free unit with the best space coverage, but there are other options besides mainstream retailers. I’m working on becoming a distributor through my business, so I can help bring these units to other mold patients whose lives will be changed by them as dramatically as mine has. If you’re interested, please email me, and I would love to show you what a difference they make if you are mold-sick like me!!
Blessings to my fellow 4-3-53’ers. Let me know your experience with AirFree if you have one!