Uncovering Mold: Our Story

When people think of a moldy home, they usually picture walls covered in toxic black stuff. This was not our case. Our mold was mostly hidden. It was practically invisible, secretly affecting our health. Our home was beautiful, and it was recently renovated. Many people suffering from symptoms of mold toxicity, yet unable to find mold in their beautiful homes, often ask me how we found hidden mold. As it turns out, there were so many signs; we just did not know what to look for. Once you learn the signs, the answer becomes clear.

Sick Family

My husband, infant daughter, and I moved into this home the summer of 2016. Upon moving in, I had a lot of anxiety and fatigue. I believed the anxiety was from unexpectedly moving to a state that had never been on my radar. My husband’s job brought us from a northern state and large cities to a southern state in a rural area. I felt alone and isolated. My fatigue, I assumed was due to being a new mother and having no family or friends nearby. Thankfully, a caring community surrounded us.

My husband developed a constant cough when we moved in. I remember people offering all sorts of cough remedies for him. We guessed the cough was due to moving to a different region with different allergens. Then I started coughing, too. After 18 months of coughing, I saw a family nurse practitioner at a functional medicine clinic. She believed it was due to mold in the home.

I immediately turned down her opinion. We couldn’t see mold. That couldn’t be right. And even if it was, I wasn’t sure what could be done because we weren’t homeowners.

At the end of 2017, I became pregnant with my second child. I had HG and was bedridden for about three months. When my son was born in summer of 2018, my body crashed. I broke out in rashes. Eczema spread from my scalp to my chest and back, covering about a third of my body. It burned. I saw my OBGYN, thinking this was a postpartum symptom or an infection from the hospital. He had no advice. I saw a dermatologist who kept me on a steroid prescription for over a year that shouldn’t be taken longer than a few weeks.

I had severe hormone imbalances that made me lethargic and depressed. I started seeing the functional NP more often. I had hormone panels done, blood tests, tested for MTHFR, food allergy panels, and a GI-Map. I spent thousands of dollars on tests and supplements. I was diagnosed with Chronic Fatigue Syndrome. My NP also suspected I had POTS and fibromyalgia.

By 2021, I had severe sensory issues. My toddler cried most of the day, especially when we were home a lot. All the noise felt like sandpaper dragging across my whole body. It made me want to bang my head on the wall. Fatigue limited my life. I taught in the mornings. Took care of my children. Helped volunteer wherever my husband needed me, and once I was home, I couldn’t pick myself up. I remember people asking me to join certain things and volunteer for events, and I couldn’t keep up. I remember people popping over at the house and commenting on dishes or laundry piled up. I was drowning. I figured this was motherhood — serving others until your cup is empty. I thought it was normal; I just needed to be stronger.

Fall 2022, my daughter had daily headaches so bad, she couldn’t do her schoolwork for more than 10 minutes at a time. We saw our NP, then visited an optometrist to have her eyes checked. We couldn’t find an answer. She felt temporary improvement with a chiropractor, but headaches continued plaguing her, and then she had terrible leg pain we assumed were growing pains, but it lasted for months. Then our pediatric dentist discovered our daughter had several cavities. She also broke her thumb and then a few weeks later broke her finger. Then my daughter developed a peanut allergy. It was one thing after another, seemingly disconnected.

Around then, I became concerned with my son. What I thought were tantrums were now so bad, I wondered if something was wrong. He started throwing up from crying so hard, and screaming lasted up to a total of three hours per day. He started head-banging. He had food sensory issues. All his milestones were on the very tail end of normal. He was not speaking in sentences yet. We took him to a pediatrician and then got a second opinion. No answers.

All four of us were struggling with chronic health issues, but our symptoms were all so different from each other, we didn’t consider a common denominator… yet.

Sick Visitors

Around that time, I had a friend visit. She had been diagnosed with mold toxicity and recently had her home remediated. Once she came to my house, she was sick with a migraine the entire time.

May 2023 rolled around, and my family from out-of-state visited. My mom always suffered terrible allergies when she visited, which again, we always blamed on the change in regional allergens. But my sister got sick, too. Her symptoms cleared up when she went outside. She said to me, “There is something in your house.”

Then another friend who was recovering from mold visited me, and she felt unwell in my house.

Sick Vacations

We used to visit our out-of-state family three times a year. During 2022 and 2023, every single vacation we took, I got sick. I remember a friend pointing out that it was every time and asking why. I told her that some people get sick when stress is released because the immune system puts down its defenses that it had been keeping up so high. She asked me why I was so stressed, and I didn’t have an answer.

In June 2023, we visited family again, but this time, we stayed a little longer than normal. After a week and a half passed, I felt great. Then, I got sick when I came home.

Putting It All Together

My son, then age 4, also became sick as soon as we returned home. One day, he was playing Khan Academy Kids and then suddenly screamed that the room was spinning and the world was falling. His eyes were darting all over the place, and he couldn’t stand or sit. He was on the floor, screaming and writhing. I thought it was a seizure, and then I realized he was dizzy. We gave him some medicine, and he felt better and went to bed. But the vertigo came back the next day.

At this point, I started wondering more about mold. We don’t follow the standard American diet. We use nontoxic food, cooking utensils, cleaning products, you-name-it. If we’re all sick, it must be an environmental toxin. Then I remembered what our NP said those years ago. Mold. I started looking for it, especially focusing on areas that had water damage, and I found it.

I started reading and discovered that people living in mold often get sick when they leave. Mold is a stressor that ramps up the immune system. When leaving mold for a short time, the immune system begins to lower its defenses, and sickness occurs. However, if a person leaves mold for two-to-three weeks, those acute illnesses often are conquered, and the immune system defenses stay low. This is called “unmasking.” Returning to mold after unmasking can cause mold symptoms to skyrocket as the immune system ramps up. This is why my son and I became very ill returning home from a longer vacation.

I needed more proof, and because of my son’s vertigo, I needed it quickly. We called an indoor environment professional to have the air tested for mold. Too late, I found out that if the mold was Stachybotrys, it’s a heavy, wet mold that is too heavy and sticky to be in the air unless there is a large amount of it. I also did not know air purifiers should be turned off, and I had two large units running the day of testing.

The inspector took his samples. He checked leaking windows. I showed him the bathroom ceiling, which seemed papery-looking. When he touched it with his finger, it crumbled. Black dust rained down into the bathtub, and a hole the size of his finger was in the ceiling. He took some samples and moved on. I cleaned up the dust after he left.

A friend later came and found mold in the attic and discovered the bathroom exhaust fans were not vented correctly.

The inspector’s report came back positive for Aspergillus/Penicillium, Chaetomium, and Stachybotrys, despite the test being an air test, and despite having air purifiers running. The latter two types are known to cause significant damage, including neurological and nervous system damage and even cancer. He recommended that anything growing mold needed to be torn out, not sprayed, not painted over, but completely removed under containment.

I tried to clean away some of it. I knew not to use bleach, because the chlorine evaporates quickly, leaving behind water, which feeds mold. It can kill surface mold, but on anything porous, it feeds the root. I sprayed with hydrogen peroxide. Immediately, my lungs started burning. I did not know that mold can react when threatened, shooting out spores as a defense mechanism.

At this point, I became dangerously ill. My whole body broke out in a fungal rash. I developed oral thrush. My lungs were burning. I started trembling. I lost 30 pounds in a month. I had to stop working out because my fingers ached so much, I couldn’t grip dumbbells, and my whole body felt arthritic. The scariest part was waking up each morning, because my body just wouldn’t. I’d wake up, sit up, and fall over. I’d try again, and keep falling. Sometimes I made it out of bed and fell on the floor. Sometimes I’d wake up several minutes later and realize I had passed out. This became an everyday thing. I started setting my alarm two hours early so I could get my body under control before I was needed. POTS symptoms were so bad, I remained seated all through church. My husband took a three-week sabbatical, and that was coming to an end. I didn’t know how our family was going to function with him going back to work. The school year was approaching, and I didn’t know how I was going to get myself in my classroom at 6:45am every day.

With the house all stirred up from the inspection, signs of mold grew worse. Our water pitcher/filter in the fridge grew mold inside it. Our produce and refrigerated leftovers went moldy within 24 hours. The cats’ food bowls grew mold in a day, and the cats had black mucus coming from their eyes and noses. Our toothbrushes had tiny spots of mold unless I sprayed them with hydrogen peroxide after each use. Anything wet grew mold.

Starting Recovery

I threw together lesson plans and got a substitute teacher. The first day of September 2023, I left with my kids to stay with my family out-of-state. The first week, I was sick, but the second and third weeks, my rash and thrush were gone, my energy was amazing, and I had no trouble keeping up with my two kids and my niece and nephew. My son’s vertigo became less severe and occurred less often.

When we returned to stay with my husband in a hotel, the house was going under mold remediation. It was taking longer than we had expected, and I had only packed summer clothes. We were told to go inside to get our things. I was inside for no more than 3o minutes. The trembling started. My heart hurt. I thought I was having a heart attack and ended up in urgent care.

Although my children did not go in the house, they were given their autumn clothes and some toys, which were cleaned first. My son’s vertigo returned with a vengeance. He also developed tics (which presented as a cough that wasn’t an actual cough, repeating words, and his whole upper body seizing up like in a yawn). Seemingly overnight, he developed OCD — constant hand washing, an absolute need to do things a certain way, like overturning a book that had been put on a table face-down. Sensory issues with food became so severe, I no longer knew what to feed him. He lost muscle control, especially in his hands, and he could not write or color. Bathroom incontinence became a big issue. These are symptoms of a type of autoimmune encephalitis called Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). This required mold detox, inflammation treatment, and nervous system support with a specialized doctor. Cognitive Behavioral Therapy was helpful for OCD. We also put him in occupational therapy to help with the loss of muscle control and to balance the brain.

Our doctor explained to us that mold depletes the body of minerals. This was why my daughter was getting intense headaches, immobilizing leg pain, easily breaking bones, and developing cavities. Concerning peanuts, this is a food naturally high in mold. It turned out my daughter was not reacting to the peanut itself but to the mold on it.

We chose to leave the house and our belongings due to our severe health issues. It was a heartbreaking decision, and nothing about it was easy, but nothing we owned was worth risking our son’s health. Nothing we owned was more valuable than his recovery. My only regret is that it took me so many years to listen to that nurse practitioner who first suspected mold. I wish we had tested the house right then. I wish we had paid the $380 for the mycotoxin urine test. I wish I had known mold did more than cause allergies. I wish we had done something, anything, years sooner than we did. Had we taken care of it sooner, the remediation would not have been so costly or extensive. Our health may have been strong enough to recover in a remediated building, and we might have been able to keep our belongings. I remember thinking paying $380 for yet one more test was more than I could afford, and now I laugh at that, because putting it off for years and then treating four people for mold toxicity while also starting over from scratch and losing my job was financially devastating.

What to Look For

While mold can cause respiratory and allergy symptoms, also be on the lookout for things like thrush and eczema. If there are neurological symptoms such as tremors, twitches, tics, migraines, OCD, suicidal thoughts, thoughts of self harm, hallucinations, seizures, multiple sclerosis, dementia… you need to get out.

Not sure if it is mold causing your health issues? I recommend first looking through your home for water damage. Anything involving water, check for leaks – sinks, toilets, washing machines, dishwashers, ice machines, refrigerators, fish tanks, etc.

Test your home. Often times, multiple ways are best. Starting with an ERMI will give you an idea if mold is present and which kinds, but it won’t narrow down the source.

Hiring a qualified indoor environmental professional will help find the source, and your IEP should act as a third party with you and a remediation company, ensuring that remediation was successful with post-remediation testing. You should interview your IEP before making an appointment; Change the Air Foundation has a list of questions to ask your IEP before hiring. Your IEP should use a variety of test methods – tape tests, indoor and outdoor air tests, thermal imaging camera, moisture meter, hygrometer, borescope camera, and particle scanner. You should clear out under-the-sink cabinets before your IEP comes. You should turn off air purifiers days beforehand.

You can also hire a mold dog. Many mold survivors have found mold dogs to be very successful finding hidden mold.

Test your body. Ask a functional, integrative, or holistic medical professional for a mycotoxin blood or urine test. Our family went the route of switching to a naturopathic doctor who does muscle testing (also called applied kinesiology) so we could test for mold in the body and test which organs it was affecting. For my son and I, mold was found in our brains, which is why our symptoms involved our nervous systems. My husband had mold in his digestive tract, causing reflux, which then caused the chronic cough. Muscle testing allowed us to treat multiple different organs and systems all with one doctor rather than seeing several specialists.

Thermal Image of Heat Leak thru Windows from Healthy Building Science

My Past ≠ Your Future

Hindsight is 20/20. Regret and “what ifs” certainly don’t help my nervous system as my body recovers. I can’t dwell on “shoulda, coulda, woulda.” But what I learned might just save another family from the heartache and devastation, and that makes it worth sharing our story. If you think there is a chance mold may be causing your family health issues, please take time to go through the resources listed below.