Overcoming Mold Illness: My Story + A Guide to My Recovery

What I’m going to share today, some may say is reckless advice, some may say it’s too much, others may say the actions we took at the time weren’t enough.  It is important that when exploring the option of mold causing your symptoms (assuming that is what led you here) you remember that by God’s design, we are all individuals who are biologically unique with different experiences and toxic loads based on our genetics, our environment, our detox pathways, and more.

What I experienced or what worked for my family and me in terms of healing, supplements, remediation, and recovery, may not be the same path that would work for you.  You may need to do more, you may need to do less, or you may need something different altogether.

It is my prayer that while you are here you will glean what you need to, be encouraged, and gain the strength to be physically able to do what you can where you are right now, and that the Holy Spirit will guide you on your healing journey.  I know this path can feel heavy sometimes, but there is hope for healing. I pray God will send a community to love on you and help pull you through this to the other side where you too, may help others on their path.

Oh, and because it was helpful for me to not feel so ashamed by what I was going through, I want to start by letting you know I read a report that said: “around 70% of U.S. homes contain a certain level of mold”. That statistic shocked me.  Some sources say 47%, and some say 80% of buildings in America contain mold, you get the point though. It’s not just you, it doesn’t mean you aren’t a good housekeeper, mold just goes where it wants and does its thing. I kept a very tidy home, and when we discovered mold was the culprit behind my symptoms I struggled with feeling “gross” and “dumb” that we had mold in our home and I didn’t even know it. Ours was hidden behind a wall and in duct work, it was not visible to us. Some people begin to get mold sick from their work environment.

Let’s do this, it’s time to dive into where it all started, back in the fall of 2020. Yes, if you recall, this was when the world was in what I refer to as “full crazy” mode. That’s when I began to get sick.  It came on quickly and I assumed it was a cold or strep throat, I even took a pregnancy test thinking maybe my nausea was related to a surprise baby blessing. That was not the case.

What I went through was tough to diagnose, as it was a trifecta that led me into a full toxic burden:

1. An allergic reaction to dental anesthesia after a filling.

2. New (toxic) acoustic ceiling tiles being installed in our basement that began to shed fiberglass.

Lastly, and the toughest to diagnose by regular doctors:

3. Mold illness triggered by an improperly installed HVAC system and poor or non-existent caulking on the outside of our home from service workers ranging from electricians to plumbers when our house was built. Action Item: Go check the caulking on the outside of your home if you haven’t lately. Check around any tubes and wires heading into the home, around doors and windows, and anywhere else moisture may be creeping in.

My personal body burden of toxins was maxed out and symptoms began to present themselves.  The most debilitating, although it wasn’t the first sign, was nausea and anxiety. I feel things intensely, I always have. Throughout adulthood, my go-to emotions had been without a doubt happiness and joy, but through this illness, those had been replaced with fear and gloom.  It was unexplainable to me how suddenly my brain began to go to the “worst-case scenario” for every big and little event that crossed my mind.

My heart rate was often opposite of what it should’ve been, racing while sitting in a chair, dropping to where I would nearly pass out while vacuuming or exerting myself physically. I would look at my watch and be in disbelief at what was happening.  It confirmed that what I had been thinking and feeling wasn’t all in my head.  This was real, this was a measurable stat.

I had the most intense pains in my back that I thought maybe was my gallbladder (remember I was in a constant state of worry and trying to figure out why I wasn’t feeling well). I would curl my body up on the floor at my husband’s feet under his desk while he worked from home and cry.  We would both cry during this season of life. The whole house cried, our extended family cried, our friends cried and prayed with us.  This was so hard to navigate and every time I went online for help I was sent down an unproductive rabbit hole that left me feeling more helpless and hopeless.

My body was so ramped up and I was stuck in flight mode, my bowels were loose for weeks, and my bowel movements during this time were bright almost neon yellow, indicating there was some serious problem.

I had phlegm in my throat and a little cough every morning when I woke up.  I had tightness in my chest and experienced what I imagined asthma attacks to feel like.  I had an overwhelming amount of nausea and anxiety along with the tightness that would come in deep waves and take over my body, and go away for just long enough for me to think I was maybe okay, but then it would hit again. My eyes were scratchy and dry.

I lost weight so quickly that I hardly recognized myself in the mirror and my clothing no longer fit well, it just hung on my frame.

A few weeks into my illness, before I had a diagnosis, my husband would often find me in bed, sometimes convulsing.  It was terrifying to be laying there, unable to control my body, and then see my little kids peek their heads around the corner to check on me.  Their eyes filled with fear, but they smiled and prayed, believing I would get better. Their hope inspired me to fight harder.

I prayed every day that God would put before my eyes what I needed for healing, and graciously, He did! Oh, how I want to tell you all the amazing ways God worked through this time in our lives.  It was messy, but it was one of those beautiful messes where He gets all the glory.

I went to an ER that didn’t meet my needs, rather suggesting I get talk therapy.  What?!  I have nothing against therapy and think it can be very helpful, but the doctor did not examine me and made a quick decision within minutes of me being in their care and sent a nurse back in to deliver the news, refusing to give me a proper exam. Remember, the world was in a place of social distancing and full of fear.

Our primary care doctor at the time squeezed me in within a day and had so much compassion for what I was going through, but all of my labs were within the “normal” range, and my EKG came back good in her office.  I later learned this is common when dealing with mold.  She predicted this was like a drug reaction from the dental anesthesia, essentially I was “high” and couldn’t come down.  She suggested I drink ‘a lot of water’ to flush out my system and to take it easy.

When I still wasn’t better within another week or so, I cried to my parents and told them I loved them, but I didn’t think I was going to make it.  That makes me cry just typing this out and looking back on what I felt like during that phone call. I knew of one local functional medicine doctor that I thought, through my prayers, may hold the answer that I needed to unlock true healing within my body.  Her hourly rate + deposit was nearly in line with my husband’s weekly take-home pay.  My dad told me to make the appointment and he would pay the deposit I needed to be seen.  God bless him. If he had never offered that, I don’t think I would be here today.

That doctor was a godly woman who was an absolute wealth of knowledge.  She had currently been going through training to diagnose and treat patients with mold illness.  I didn’t know this when I made the appointment, and she didn’t know what was wrong with me when she took my appointment.  Only God could orchestrate that.

Over a few video appointments, we worked to form a plan, which I will explain more of in a bit. She ended each appointment with a prayer, and I felt so at peace each time.

Mold illness, a subcategory of Chronic Inflammatory Response Syndrome (CIRS), can be a debilitating condition, like it was in my case. It occurs when we are exposed to harmful mycotoxins produced by mold. While it can be challenging, recovery is possible with the right approach.

Disclaimer: This information is intended for general knowledge and informational purposes only, and does not constitute medical advice. Always consult a qualified healthcare professional for any health concerns or before making significant changes to your current treatment plan.  If your Western Medicine doctors do not understand mold illness and you suspect this is what you have, seek out a different provider, and ask around. Locally, I only found education and healing from a functional medicine doctor.

Understanding Mold Illness

Mold illness can manifest in a variety of symptoms, including, but not at all limited to:

• fatigue, brain fog, headaches, irritability,
• respiratory issues, shortness of breath, chronic cough, sinus congestion,
• migraines, rashes, palpitations, hallucinations, Alzheimer’s dementia,
• muscle aches, joint pain, digestive problems, food intolerances,
• and often, symptoms that mimic anxiety or depression.
• I also had sensitivity to EMFs and found relief while wearing a Harmoni Pendant (yes, the very ones that I thought were some kind of woo-woo hoax. I was wrong).

I think that it’s crucial to recognize that anxiety and depression can be side effects of mold illness or toxins in your environment. Many people have been misdiagnosed with these mental health conditions when the root cause was toxic mold exposure.  My husband, who is the most gentle and kind soul, experienced what is referred to in the mold groups as “mold rage”.  His frustrations were high and patience thin, and not just because of the fear of what was happening to me, and needing to take on so much more responsibility and provide for our family financially and physically.

Key Steps to Recovery- Action Steps

1. Remove Mold Exposure:

• Identify the source: Conduct a thorough inspection of your home or workplace for mold growth.  Now you may not always see it, as sometimes, like in our case it was hidden within a wall and ductwork. It can be in the drain pain under a refrigerator, around windows where moisture can accumulate with temperature changes, under the threshold of an exterior door, behind a toilet or shower, in a crawl space, an attic, etc.

Try this: Remove yourself from the mold, and leave the home for a couple of days if you can, or take a full day away to spend time outdoors. Do you feel better?  That is a sign something in your environment could be the culprit (provided you stay somewhere mold-free, many people go camping to spend time outdoors). Sometimes it is mold in a work environment that is the problem and symptoms seem to lessen or disappear when you get an extended holiday.

• Quality testing: If you do not have visible mold, consider doing an ERMI test.  This company will send you a Swiffer to dust your home with, once it is loaded with dust you place it in a baggie and send it back.  They will evaluate the dust in their lab and send you a report with their findings.  From there you will know what kind of mold you are working with and begin to make a remediation plan.

Please note: Air quality sample tests, and tape samples, in my experience and from what I have heard from others on their journey, are not an effective way to test for mold, especially if you are already having symptoms.  I know an ERMI is usually more expensive than the other routes, but it is an effective test covering 36 different species of mold.

• Professional remediation: If necessary, hire a reputable mold remediation specialist to remove the mold safely and effectively.  Due to where ours was located we hired a duct cleaning company who was also able to sanitize our home the same week they cleaned our ductwork.  During the sanitization process, we had to be out of our home for 24 hours.  Leaving for that little bit of time I began to feel better, and getting back into our home after it had been sanitized I felt much better as well.

• Declutter and clean: I know, this step can seem like a lot, especially when you are feeling ill.  I am so sorry, there is just no way around this though.  Do not skip this.  Call in help if you need to.  Work in small pockets of time as you are able. Remove excess items, especially porous materials like paper and fabric. Regular cleaning, including vacuuming, washing curtains, and dusting, can help reduce mold spores in any home.  In most cases, things like glass and metal can easily be cleaned.  Furniture cleaning or disposal will depend on how ill you are, and how you feel around it.  Don’t forget to vacuum above cabinets as horizontal surfaces hold a lot of dust, and mold loves to hang out on dust.

• Mold-sniffing dog: Consider hiring a mold-sniffing dog to identify hidden mold sources.  We did this and I am so glad we did. Through this, we were able to pinpoint specific problem spots, rather than blindly cutting into walls and guessing where the mold problem may be, which could have potentially made things a lot worse and cost more than necessary.

I want to be transparent that the steps it took to identify where we had mold, the doctors visits, and the remediation cost us so much financially, that we had to take out a loan from the bank.  That hurt after pouring so much into paying down our mortgage so we could eventually be debt-free.  We lost so much in personal belongings, but it was absolutely worth it to be alive and well enough to enjoy life again and care for my family.  Spoiler alert: a little over 2.5 years after this all started we welcomed another baby into our family.  That was something I did not at all think would be possible even before getting sick, but not only did I heal my body from where it was, I was able to live so much healthier and stronger having learned what I did about environmental toxins and nutrition, that my body was able to support a full-term pregnancy. See, beauty from the mess. It is possible for you too, whatever your mess is right now, push through it and get ready to embrace the beauty that God has ahead for you.

I often did, and still do, think of the bible verse about not storing up our treasures on Earth.  I decided that if I have the Lord, my family, and my health, I have all that I need.

 “Do not store up for yourselves treasures on earth, where moth and rust consume and where thieves break in and steal; but store up for yourselves treasures in heaven, where neither moth nor rust consumes and where thieves do not break in and steal. For where your treasure is, there your heart will be also”

Matthew 6:19-21 NRSV

This next one is crucial, and I wanted to make it step 1, but removing Mold, rather than masking it (painting over, etc.) is so important that it got first place.

2. Support Your Body’s Detoxification (detox slowly, and with a doctor’s help):

• Hydration: Drink plenty of filtered water to help flush out toxins.

Avoid other types of drinks right now, including coffee. Unfortunately, this means even plain black coffee. Did you know that the majority of coffee tests high for mold? According to LifeBoost’s blog, 99.1% of coffee beans are covered in mold. You do not want to add more toxins to your bucket as you are trying to heal.  Later on, when you are feeling well again, and if you decide that you do want to consume a cup of coffee occasionally, I recommend LIFEBOOST for brewing at home. They use specialty beans that are non-GMO, mycotoxin-free, and chemical-free.

• Nutrition: This was the biggest immediate needle pusher for me. Focus on a whole foods diet rich in antioxidants and anti-inflammatory foods. Cut out ALL GLUTEN, DAIRY, AND SUGAR.  Yes, I felt what you are feeling right now too, so what can I eat?  Our gracious God put so many good foods on this Earth for us to enjoy.  I did the Institute for Functional Medicine’s Elimination Diet for several months (it was suggested to start with 4 or 6 weeks, but I felt so great eating this way that I kept at it). Now today I still focus on consuming fruits and vegetables and quality meat.  If food has a barcode on it or comes in a box, it more than likely will not support your body’s healing properties and give you adequate nutrition.  I know, some produce has a barcode, but I hope you get what I’m saying.  If it’s the right season, visit your local farmer’s market for fresh food and inspiration.  Plant a garden if you are able, the time outdoors will be good for you too.

• Supplements: This will vary greatly depending on your own body, this is an ask your doctor first section!  For my body, my doctor and I decided on supplements like vitamin D3 with K2, EPA-DHA fish oil, a multi-strain probiotic, a quality multivitamin, magnesium glycinate before bed, Biocidin, glutathione, I-3-C, digestive enzymes, and GI Detox (activated charcoal to bind and remove toxins).  It is important that you work under the guidance of your healthcare provider to create your own battle plan, rather than mimic what worked for my body.

• Saunas: Regular sauna sessions can help promote detoxification.  When I was first sick, I was way too sick to even consider leaving the house to sit in a sauna uptown, so I had to find other ways to sweat out toxins.  Eventually, when we were able and I was strong enough, we bought a personal Therasage Sauna to use in our home.  This helped me to sweat out toxins and use red light at the same time, it was, and still is, very efficient.
• Exercise: Gradually increase physical activity as you are able.  This is so good for your lymphatic drainage.  If you aren’t familiar, basically the lymphatic system is a part of your immune system and deals with the fluid of the body.  When your body isn’t moving enough this can cause a build-up that causes swelling and creates a problem.  I started with slow gentle movements and stretching, even a walk around my neighborhood was too much for my body to begin with.  I bought a vibration plate to help move lymph fluid and help me to regain some muscle tone, as I had become quite weak.  A small trampoline for walking on indoors was helpful to me as well.

3. Manage Symptoms:

• Rest: Prioritize sleep to allow your body to recover. At first, I was so amped up, but then would crash. When I finally came down from the high of the dental anesthesia reaction I was tired all the time from what my body went through. As a mom, I still wanted to stay up and get done all that I could each day during the quiet evening hours when my kids wouldn’t see me struggle so hard to do basic tasks. I had to intentionally set an alarm and force myself to go to sleep, and another alarm to wake up and get out of bed each morning.  Because my body was so misaligned at the time I needed to reprogram my circadian rhythm. I did this by waking up and spending about 15 minutes on our deck to get morning sunlight on my eyes first thing.  This helps with the body’s natural melatonin production which makes it easier to sleep at night when the time comes.

• Stress management and soul care: Practice relaxation techniques like square breathing, journaling, and praying.  Delegate what you need to: mold sick or not, you do not need to be doing everything alone.  We are created to live in community with others.

4. Environmental Controls: Do what you can

• Air filtration: Use HEPA air purifiers to improve indoor air quality.  I have used a few different brands and have some YouTube videos where I explain how to use them, why we do, etc. You can find those here, here, and this last one here is where compare 3 different brands/styles. I also have a video we made for the duct cleaning company where my husband and I share our experience with them.  Things to look for, avoid units that emit ozone, which can be hard on the lungs, and check the CADR (clean air delivery rate).  You want lots of air exchanges per hour, so be sure you have the correct size of unit for the space you are purifying.  This was a big investment for us, so we started with one air purifier that my husband would move to the bedroom at night, and then the living room during the day.  Once we knew it was helping and we were able to afford it (remember mold rocked our finances something fierce) we purchased another. Now today we have them in every bedroom of our home, and the two living rooms.

• Mold prevention: This is a key step that I didn’t understand before getting sick.  We built our home when I was 19, and knew nothing about true home ownership and responsibilities.  It’s important to reduce humidity in your home and address any water leaks promptly. While we didn’t have water leaks, we did have high humidity, which I didn’t know until I bought a smart hub and humidity/temperature sensors to place around our home.  Our home was built so tight that it didn’t allow for much airflow, which coupled with the HVAC system not draining correctly was a bad combo.

• Personal care products: Choose non-toxic personal care products to minimize chemical exposure.  All toxins in and on your body add to that body burden, mold or not.  I opened the bathroom garbage and chucked anything toxic, and it was a lot, even though I had swapped many of our products out previously. Yes, I had paid money for these things, but they were not supporting me, and knowing what I did about toxins, I didn’t want to pass them on to anyone else either.  Nail polishes, hair care, lotions, it all went.  As a result, I was able to replace those products with things that had a smaller footprint (hello, shampoo & conditioner bars) and were better for my body (fewer ingredients, no artificial scents).  I had already been using a nontoxic makeup, so thankfully there was not much to mess with in that area.

5. Medical Support:

• Functional medicine doctor: I know I already said this but in case you are hindered by the cost and want to skip this step, please do consider consulting a functional medicine practitioner who specializes in mold illness.  You can tell them upfront you want short visits and a transcript of your conversation or notes and action items typed out if that is helpful for you. I know mold can cause brain fog, so do not be hesitant to write down all that you need to during your appointment.
• Testing: Undergo comprehensive testing to assess your overall health and identify any underlying imbalances.  Ugh, you guys, everything that could’ve come out of my body was tested, stool samples, blood samples, urine samples, I even swapped my nasal passages and sent off a sample to be evaluated.  It all helped paint the picture of what I was dealing with, what my body was holding onto, and where.  If you know you have mold in your environment, I would say focus on decluttering and diet and save some money on testing for now.  If you came here, there is a good chance it is already causing you problems and you can skip some tests for the sake of assumption and taking steps towards remedication and healing.

During this time I did a Comprehensive Food Sensitivity Test from EverlyWell, which I ordered from Amazon. That was so eye-opening to me about what foods may be triggering some of the symptoms in my body.  I had already been keeping a food journal and trying to document how I felt after meals.  Through this test, I discovered 6 things I had been eating and cut those out. I noticed an immediate relief both digestively and with some respiratory problems.  My husband did the test later and had 29 intolerances! Avoiding those helped improve his mental health greatly.  The OCD he had struggled with since childhood suddenly became manageable, and nearly non-existent.

• Personalized treatment: Develop a tailored treatment plan based on your specific needs, be patient as you wait for results, and be open to changing things up if you are not seeing progress.

Additional Tips

• Patience: Recovery from mold illness can take time, but relief can also come quickly if you are following a good diet, and avoiding mold. Be patient with yourself and celebrate small victories.  This is so important. Set goals for yourself too.  I had set a ridiculous goal when I was bed/couch-ridden that I would stand up and dance for one whole song during a live-at-home Phil Wickham concert, AND I DID.  It was a small win, but it was huge for my family and I. I was able to set more small goals like that and begin spending more time standing.  I pray you are not in the same debilitating state I was, so consider where you are physically, and set goals that will guide you to improvement.

• Support system: Connect with others who have experienced mold illness for support and encouragement.  There are some Facebook groups that were helpful to me.  I will remind you that everyone’s journey looks different, so do not be overcome with fear as you read stories from others who had to abandon their homes or literally discard every single item that wasn’t glass or metal.  I did work through counseling with a friend to help improve my mental health and keep me rooted in Christ and grounded as my world was falling apart.

• Avoid triggers: Identify and avoid triggers that worsen your symptoms.  I could walk into a room, or touch a book and know it was going to create a symptom in my body, so I avoided a lot of places, and still do for the sake of avoiding toxins.  Our local dollar store has such a strong plastic smell that I visit it less than twice a year, whereas prior to being mold-sick I would browse there for fun.  Now when I leave the store I can smell the airborne chemicals and toxins on my hair, and choose to avoid that. I guess that has been saving us money. Ha!  You gotta look at the bright side!

• Educate yourself: Learn as much as possible about mold illness to empower yourself.  It can feel like information overload at first.  It’s okay, take note of what you think you need, and discard the rest.  If there is something you need to know, I believe God will lead you back to it again.

• Spend time outdoors: Getting outside each day can be beneficial for overall well-being and may help reduce exposure to indoor pollutants.

Remember, everyone’s journey to recovery is unique. It’s essential to work closely with a healthcare provider to develop a personalized treatment plan. By addressing the underlying causes of mold illness and supporting your body’s natural healing processes, you can improve your overall well-being and regain your health. There is hope for healing, even when symptoms mimic anxiety or depression.

Oh, dear friend (yes, after sharing this much of my life and talking about bowel movements, we are friends now), I just imagine the desperation you may be feeling right now and I want you to know that I believe with my whole heart that it is possible for you to overcome this.  It is my prayer that you have a tribe of people who want you better and will do what they can to get you there.  Lean on your people, and be specific when you ask for help, do you need someone to clean, watch kids, grocery shop, or meal prep with you?  Ask for what you need.

These lyrics “I don’t want to feel like this tomorrow, I don’t want to live like this today, make me feel better, I want to feel better, stay with me here now and never surrender” moved me to get better when I was in the trenches: https://www.youtube.com/watch?v=-IooCcx4c9U