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A Mold Story: The Science, Remediation, and More
Many times, the fear of anything is worse than the thing itself. Do you remember being afraid of the monsters under your bed when you were a kid? You may have stayed up late at night thinking about them, ruminating on them… and when you ran to the bathroom, you went as quick as you could to make sure the monster couldn’t grab your tiny feet.
As an adult, the monster under the bed translates to many things. Fear of missing out, fear of the death of a loved one, or fear of an invisible monster that seems to be popping up in roughly 50% of homes in Austin and 70% of homes in the US - mold. According to The American College of Occupational and Environmental Medicine, 10% of people are allergic to mold. But from my experience in practice, SO many more are impacted by living in a house or working in a space that has mold. It’s common for me to see people who experience symptoms of dizziness, brain fog, fatigue, insomnia, anxiety, and more -- all due to mold exposure.
In the middle of writing this blog post, I experienced a water leak and uncovered mold living in my home (more on that later). As I write this blog, I want you to know that it comes from the passionate place of wanting to spread awareness and is based on my experience… and recounts numerous stories from experts and my clients who went through mold discovery and remediation. In this blog, *I don’t intend to offer medical advice but to inform you on different ways to move forward after uncovering mold.* There is no perfect way to address mold. Only we can do what is best for us and our families. My intention is to share this information with you as a resource so you can make a decision that empowers you.
The History:
I’d love to first burst the fear bubble around mold by giving a little bit of background. Mold usually thrives in damp, humid areas -- in your home and in the world. If you have had a leak, have a basement, or live in a hurricane ridden zone, it’s almost guaranteed that you have encountered mold. Mold spores exist everywhere, and they grow on every surface area. Mold belongs to the fungi kingdom and typically lives in soil, plants, and decaying matter. There are also thousands of different species of mold, and many molds are characterized by their health effects – those are the ones we generally want to pay more attention to. Allergenic molds cause people to experience common allergy symptoms, pathogenic molds can cause infectious diseases, and toxic molds produce mycotoxins that are poisonous to humans. Unlike the other two, toxic molds intentionally harm other living things. Common types of toxic molds include, but are not limited to: Stachybotrys, a black mold, Memnoielle, also a black mold, Chaetomium, and Aspergillus. Because molds produce allergens, irritants, and even mycotoxins, animals (all animals) can have a reaction to mold.
The Facts:
According to Green Works, a company that provides standard mold testing, a concentration of mold spores below 500 sp/m3 is considered normal. A concentration of mold spores above 500 sp/m3 is considered high. Therefore, if your report comes up with high concentrations of mold, it will likely advise you to remediate the problem. One test I have come to familiarize myself with is ERMI: The Environmental Relative Moldiness Index. ERMI was designed to be a sensitive and standardized method to assess air quality and mold contamination. ERMI uses DNA-based technology to differentiate and quantify certain indoor mold species. ERMI values > +5 represent high levels of moldiness. That said, ERMI tests are not the best at pinpointing where the mold source is when the dust is collected in multiple places of the home… but can be specific and effective when used in an area of suspected mold. Tim Taylor, certified mold inspector of Toolman Mold Inspections and son of integrative medical doctor, Dr. Wallace Taylor, says that there will always be some mold that we live with. He mentions how mold can grow within 48 hours of a water leak, and the mold stays there and lives once the leak is fixed.
Tim also says that when he meets people who are reacting to mold, “It’s never JUST the moldy environment… there are so many additional factors to take into consideration. I am constantly telling people about Vital-Side because there gets to be this heightened fear of mold, which is limbic related. I work with people who remediate their house but after brain retraining, lose the fear of mold and no longer react to it.”
When remediation is suggested, it’s typically recommended that solid surface materials like glass, plastic, and metal can be preserved, while all other materials “should” be thrown out because they can contain mold spores. That said, people do it differently, and according to Tim Taylor, most things you own can be cleaned – it just depends on how much money and time you want to spend cleaning them. Tim also says that it’s OK to throw things away if that’s what you want to do, but it’s not always necessary. He says he also encounters many people who feel the need to leave their home immediately. For some, leaving the home can immediately dissipate chronic symptoms because the immune system isn’t directly being impacted. But Tim says it’s not always necessary to leave the home. He says, “You can still live in your home… think about how long you’ve already lived there!” And after talking to experts and many clients, this seems to be a decision that people make based on their personal situation.
Brian Karr is the co-founder of “We Inspect” and has a podcast called @moldfinders, offering a wealth of information for people who uncover mold. He says on his Instagram account that if you can’t currently remediate due to financial reasons, opening up windows, putting in air purifiers, and spending more time outside can help to dissipate symptoms related to mold. Many inspectors that I meet also say that you can take remediation at your own pace, at a rate that makes financial sense to you. Tim suggests to do a little bit and see how you feel and check-in if you’re still reacting. The body offers many signals that can help you decide how and when to remediate.
The Science:
There are many different symptoms people can experience when living with mycotoxins or mold exposure. Symptoms can include but are not limited to dizziness, insomnia, fatigue, joint pain, headaches, respiratory issues like asthma, nausea & vomiting, anxiety, obsessive compulsive tendencies, and depression.
Mold may also be a contributing factor to chronic illnesses like: Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome/ Myalgic encephalomyelitis (CFS/ME), and Mold Illness/ Chronic Inflammatory Respiratory Syndrome (CIRS). Everyone responds differently to mold. Some people have a high threshold and almost no reaction to mold exposure, while an increasing number of people have an intense response to mold that can cause them to experience debilitating and life-threatening symptoms. About 25% of the US population have genes that give them a higher risk to develop mold illness/CIRS, which is a biotoxin illness that is triggered by mold. Other reasons people may have this intense immune response include an already weakened immune system (as stated in a study published in 2021 called Mold, Mycotoxins, and a Dysregulated Immune System), predisposition to other environmental toxins, limbic system impairment (LSI), or a combination of all of the above, which is when the body has reached it’s “toxic load.”
Since 2018, I have worked with people experiencing symptoms related to mold, and I have found limbic brain retraining to be an incredible tool people can use alongside remediation. It’s important to remove the danger, as much as you can, then rewire neural pathways in your brain, replacing the message of “threat” with one of “safety.” It’s always important to brain retrain even after moving out of your house or remediating because oftentimes, the brain and body are still communicating “threat” long after the mold is gone. Tools to rewire your limbic brain can be found inside Rewire. After working with hundreds of people with mold illness/ CIRS, I have seen pairing brain retraining with remediation can be an effective way to bolster the immune system and start to feel calmer, more ease and peace, and functional in your day-to-day life.
*It’s intentional that I don’t offer medical advice including detox suggestions or treatments in this blog post. This is partially due to my experience understanding how each person Is bio-individual and not every person needs to do this. That said, for some people this is necessary. Every single person is different, and if this is the avenue you wish to take, I suggest you work with an integrative practitioner that specializes in mold illness/CIRS.*
The Stories:
Kristen:
This is the story of Rewire member, Kristen B, who is a self-proclaimed mold expert after being hit by hurricane Ian in 2023. Kristen was diagnosed with Mold Illness/CIRS, MCAS, and Lyme disease.
She and her family experienced this category five storm, and their mold remediation team came in and tore up mold in the floor in the wrong way – an all-too-common phenomenon for people—and the remediation sent it into her HVAC unit. This sent mold in through the entire home. She experienced severe illness and so did her husband and kids. Her kids developed PANS - Pediatric Acute-Onset Neuropsychiatric Syndrome - from this exposure. Once she understood the problem, she and her family left the house during remediation, where they lived in an RV specifically built to prevent mold. But two months into living in the RV, she came back to a leak that had caused mold.
Here’s what she said about what happened next:
“That’s when my limbic system went from bad to worse and I truly felt like nowhere in the world would be safe. Limby (the limbic system) was completely out of control for me. Fast forward a few months of healing or what I like to refer to as “emptying my bucket,” and I’m gaining momentum as are my kids.
We moved back to our town, which is still so damaged from the storm… mold is all around and we are living in an apartment here. I started brain retraining a week or so after moving in here to help calm my mind, as I was so fearful of yet another moldy space.
Rewire has taken me from a place where I am actively scanning for mold every day to really not caring, as I feel I have the tools in place to clean up my environment… in most cases… and relax my mind. I will say along with Rewire, the process of “emptying my bucket” or overall toxic load, was a huge piece as well. I do think you have to combine the two and either work to remediate your home if it’s fixable, I will never return to mine. You can also reduce your toxic load in other ways such as reducing chemical exposure, work on lymphatic drainage, detox from mold, etc. My body moves very slowly through this process and it’s taken me time to move the needle on my process but slow and steady is a good way to go.”
Lori:
This is the story of Lori W’s experience with mold, who was a Rewire member and now works as the Operation’s Manager inside Vital-Side. Lori was diagnosed with POTS, MCAS, Mold illness/ CIRS, Rheumatoid Arthritis (RA), and Lyme disease.
After Lori’s first encounter with mold, she moved out of her house and got rid of everything. Looking back, while living in the house for years, she recognizes symptoms her 3 children were experiencing that could be explained by living in mold – symptoms like allergies, asthma, frequent illnesses, and coughing. It wasn’t until one of her kids got a diagnosis of Lyme and PANS that they realized there was likely mold in their home. They moved into a new house that tested clear, getting rid of everything, and shortly after another child of hers developed a PANS diagnosis. With everything new and now 2 children with PANS, they started working with a homeopath to treat homeopathically. About a year later, Lori developed MCAS and POTS, and they found more mold in the new house. She attributes these diagnoses to the years of chronic stress and mold exposure, not necessarily just to the new mold exposure. This time instead of running from the mold they remediated, they decided to have their master shower and tub ripped down to studs. After this remediation, they didn’t get rid of things. For one, they couldn’t financially do that again, but they also realized they needed to figure this out without jumping to the worst case scenario. They chose to live without a shower for 2 years (sharing one upstairs with their kids) because they didn’t have the funds to rebuild and didn’t even care at that point. They were just grateful the mold was gone and they could continue to heal. At this point, Lori knew that mold was going to be part of her life, and she had to decide how to deal with it.
She started using Rewire in 2021 and has since had recurring mold issues in her same house that continue to be remediated. She is grateful for her and her children’s bodies- that keep showing when they are being exposed to mold. While those signs are becoming more mild as they heal, these symptoms are still messengers and they have learned to listen to them. She and her husband learned to remediate mold themselves since the problem seemed so common in their lives in Texas. Now, Lori views mold as something to deal with and has learned to no longer live in fear of it. Her 3 kids, including her youngest who is 7 years old, know how to identify mold and understand it can be a toxin. Now, it seems to be something they can joke about in their household without anyone going into a fear loop. Lori says that with the combination of remediation, homeopathy, and brain retraining, they are in a great flow with treating and understanding mold.
Mary Jane:
This is Mary Jane’s story with mold, or as she and her husband jokingly refer to it as “Moldageddon”. Mary Jane is a Rewire member and was diagnosed with Long Covid and CFS/ME.
Mary Jane moved into her house two months before her diagnosis in early 2020. She had always mentioned that fact to doctors, but it wasn’t until 2 ½ years later that one of her doctors suggested doing environmental testing. She put it off for a little while because she knew it would be expensive. In the meantime, she started brain retraining with Rewire.
Mary Jane says, “I started brain retraining with Rewire and started seeing really noticeable progress with my primary symptom (fatigue) and my overall level of functioning. A month or so into brain retraining, I spent a week away from my house and noticed I felt much better - some other symptoms dissipated - but then I felt worse again and those symptoms came back once I went back home. I had also recently gotten a settlement from my disability case and decided to use some of that money to get my home tested. (The testing ended up costing about $900)
My doctor recommended a specific person in town for the environmental testing and the woman who did it was so helpful and knowledgeable. A few days after she came to my house, she called me and let me know that my home had very high levels of several different types of highly toxic mold. She was very concerned with the results. The mold was in the kitchen, in the basement, and even worse, it was all through our air ducts.
I definitely freaked out a little bit upon learning this information and it was really hard to grapple with the question of how much the mold had contributed to my persistent symptoms (since my diagnosis was post-viral, if it hadn't been for the mold, would my body have been able to recover from the initial virus?).
But after a day or two I realized these thoughts and worries were just feeding into Limby's (the limbic brain’s) response, and I reminded myself that I had been healing even while living in this environment, and I used my brain retraining tools to calm down my thoughts.
My husband and I never even considered not remediating. The toxicity and levels of the mold seemed like they would have been bad for anyone, and my husband had been having some minor health issues as well. We knew it would take a while to get all the work scheduled and done, so in the meantime, I spent some time away from home, kept retraining my brain, and opened the windows as soon as I could (this was March/April in Wisconsin).”
Mary Jane says that she first had a company come and clear out her air ducts, which cost about $1000, but it felt well worth it to decrease daily exposure to mold. She was also quoted by two other recommended companies, one costing $5000 and the other $15,000. She went with the higher estimate because the person who came to look at the house noticed mold in many more places. Unfortunately, she says that there’s no way to tell if the more expensive tear out was truly necessary. She says that she could’ve gone with the cheaper option and have the environmental testing repeated to make sure the mold was gone. The main remediation happened over two weeks in June, and she and her family stayed at an Airbnb while the company was working in the house. They ended up tearing the kitchen and much of the basement down to the studs.
Though she describes the process as strenuous, she continued to do her brain retraining practice throughout and also continued to make slow progress in her healing. She and her family decided to DIY rebuild her house, which gave her an opportunity to reframe experience in a new way. She says that her family was incredibly supportive during the process, and everyone pitched in to help with the remodeling, rebuilding, and supporting financially as much as they could.
She says, “I got a wonderful opportunity to spend time with my family, working together and going out for dinner after long days. On Father's Day, we took my dad, sister, and niece to our local baseball game and ate hot dogs. I am tearing up just thinking about it because of this time spent with my family… just as I felt like I was coming back to life… was so special, and I felt so loved.
The whole process showed me how much stronger and healthier I was getting because of my brain retraining. Not only was I able to enjoy time with my family in a way I hadn't been able to because of my symptoms, but I helped with major parts of the rebuild! I painted all the new cabinets we had to get for the kitchen and my brother even taught me how to mud the new drywall. It was so empowering to be able to help with the work in a meaningful way.
About a month after all the mold was gone, I noticed that a few of my symptoms had just disappeared (headaches, runny nose, and horrible nightmares, which I hadn't even realized were a symptom until they stopped and I learned that one of the species of mold we had can actually cause nightmares). I continued to make steady progress on my more major symptoms (fatigue and brain fog).”
Mary Jane says the whole process costed about $30,000. It took about four months of disruption and hard work. Now, she feels like the work was well worth it. She feels like she’s living in a healthy environment, and eventually when she wants to sell the house, she doesn’t have to worry about passing a health hazard. She also says that getting her disability settlement helped a lot financially, and she was also able to be grateful for her family members who generously chipped in.
Mary Jane says, “I do believe I would have continued to recover even if we didn't remediate, but I wonder if it would have been slower and/or if some of those symptoms would have stuck around.”
The Conclusion:
There is no way to rid yourself of mold forever. We exist in a world where a fungus is the most prevalent, living organism. Rather than avoid it or constantly be in fear of it, we can learn to live symbiotically with it. We can set our brains and bodies up for success to do this by decreasing inflammation through limbic retraining, and set our physical bodies up to do this in any way we choose, which can include remediation, homeopathy, eating well, or simply decreasing your toxic load. There is no one-size-fits-all when it comes to dealing with mold. We all have free will and have this beautiful thing called choice. We get to choose what is the right path for us based on the information we have, our intuition, and our experiences. Through the work of brain retraining, we can start to shed light on our own capability, our own empowerment. It doesn’t mean that we should neglect potential threats in our environment… and it doesn’t mean that we should bring awareness to ALL potential threats in our environment 24/7. It means we find what is suitable for us, what is in our own best interest for our physical and mental health.
And as for me? I’m still living in my house. We had it tested last week and are awaiting the results. In the meantime, I am grateful my family and I aren’t experiencing any chronic daily symptoms, and I am using air filters. I’m also spending time, when I can, sitting outside in my backyard, enjoying the beautiful Austin spring weather. When I find myself feeling anticipatory anxiety, I come back to “one day at a time” and use my nervous system regulation tools. Pending the results, I’ll likely remediate in the next few months, without throwing out my stuff. I live in duality – knowing that sometimes, there are monsters under my bed. On occasion, I find myself checking for them. That’s OK, I’m human. But in general? I trust.
Helpful Resources:
https://www.truthaboutmold.info/statistics
https://www.bustmold.com/our-services/inspection-services/mold-inspection/mold-testing/ermi-test/
https://citrisafe.com/part-2-the-bodys-toxic-load/
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