Surviving Toxic Mold Illness

This is my ‘how I survived toxic mold’ story, but as I work with more and more patients who have been exposed to toxic mold (whether they knew it at the time or not), it might as well be all of their stories.

Chronic mold illness is not really a well-defined condition. Most official health organizations recognize mold’s effects on the respiratory system, but are less experienced with other organ systems affected.

Mold allergy is pretty well recognized, but based on the lab testing I’ve done, most people I’ve tested for mold/mycotoxin exposure and mold allergy, mold allergy is almost never present in mycotoxin-affected individuals on lab testing.

This means that if all you do is get an allergy panel run, this will not be sufficient to tell you if you’ve been exposed to toxic mold.

Mold allergy involves the immune system creating IgE antibodies to various species of mold, which only some people do. Exposure to toxic mold does not guarantee you will generate IgE antibodies to that mold.

Mold illness is often just a sort of vague and nebulous collection of symptoms that could be from many different things, and its usually not the first thing a healthcare provider suspects, not even close.

And, I certainly didn’t.

In fact, I was woefully unprepared to deal with this illness when I, myself, was affected, but I choose to see this as a silver lining, because it has made me a far better clinician with a much more robust experience and perspective than before.

After the last major toxic mold exposure I had in 2018, I have learned so much more about this insidious illness and realized that I have been exposed quite a few times in life, at various places I have lived, worked at, and even at gyms I have worked out at.

And with climate change and fluctuating weather patterns producing more precipitation, or in some cases, just greater precipitation in a shorter period of time, overwhelming drainage systems in and around buildings, water damaged buildings (with mold, or the perfect conditions for mold to grow) are way more prevalent than most of us are aware.

The Last Straw

This past summer, almost exactly a year ago, we moved into a house we bought in the Historic Northeast neighborhood of Kansas City. We love this house and the neighborhood.

Just a sampling of some of the stunning homes in the historic district I moved into

Its a Queen Anne Victorian built in 1890. The inspection prior to buying went fine, no major issues. Its structurally very sound.

About 3-4 months after moving in, maybe around August or September, I started getting super fatigued. Like I could barely get myself out of bed in the morning, barely get through a warmup set at the gym, and out of breath going up and down the stairs.

If you know me, you know fitness and health are HUGE parts of my life, having owned and operated a gym before, and obviously, have been practicing as an integrative RD.

I got pretty depressed and my memory was absolutely shot. I couldn’t focus on anything either.

I would sit at my desk and try to work on tasks for work, and not even five minutes later would be staring at the wall blankly. I was unable to remember things people had told me just seconds before.

I started having anxiety, particularly at night. I also couldn’t handle stress the same way I had been able to before.

I felt emotionally flat, had irregular menstrual cycles, zero libido, and controlling hormonal skin breakouts became like a third job to me.

At the same time, my husband and my son also started having side effects (anxiety, focus/memory problems, my son’s skin started breaking out pretty bad) that at the time I didn’t attribute to maybe being caused by the same thing. Hindsight is 20/20, though.

So, this threw me for a loop. I started by going back to my training of figuring out root causes.

I picked apart literally everything I was doing. Food, exercise, sleep, hormones–my entire life.

At one point I was pretty sure it was breast implant illness because one of the symptoms I started experiencing at this time was intense pain along the left side of my left breast, over the edge of the implant.

I even went so far as to start going through the process of trying to get a breast explant surgery scheduled (removal of breast implants). I’m actually glad that I didn’t go through with this unnecessarily now, in hindsight.

Or, I thought it might be even toxic fillers in the tattoo ink my tattoo artist had been using, just given the timing of the onset of symptoms and the extensive tattoo work I was getting done at the time — it was neither of these things, but I had to rule everything in or out).

I was that desperate to find an underlying cause that literally nothing was implausible to me.

Nothing really stood out that I could point my finger at.

We had a ton of rain that summer and early fall. It rained almost daily for a few weeks at at time.

By October, there was a water stain appearing on the ceiling of the room I use for an office on the second floor.

Once I noticed it, I figured, okay, its been raining almost non-stop for months, so this might be something we need to keep an eye on, but to be quite honest, I didn’t take it as seriously as I should.

I added it to the list of things I needed my husband to help me with, but we both got so busy that we didn’t get to it right away. It became just another ‘we’ll get to it next weekend’ thing.

It took another couple weeks for that water stain to have visible mold growing on it. At that point, it was way too late.

What I’ve learned about mold is that when you see it, its been growing where you can’t see it for a while before that.

So, then we realized we needed to get that taken care. We had our contractor come out as soon as he could that week to patch the hole in the roof we found, which was leaking into the attic, soaking the insulation, and through the ceiling.

Jay cut out the water-damaged ceiling material and we threw away all the affected insulation and materials.

I didn’t really feel any better at that point, and I realized that that mold had been able to produce spores, which not only settled on all the surfaces in that room, but also all over the house, once picked up by the HVAC system.

We spent an entire day deep cleaning that room with a mixture of antifungal products.

And, I mean even scrubbing the walls, throwing away what couldn’t be cleaned, and washing all the clothes that had been stored in there with a special laundry solution to kill mold spores (Jay uses that room as extra clothing storage).

At this point, it was mid-late November. I still felt incredibly weak and tired in the gym.

There were weeks during all this that I didn’t go to the gym at all. I stopped caring altogether about working out, and I just started focusing on what I needed to do to get better.

I lost about 10 lbs of muscle, which I had fought so hard to gain that past year. This made me super depressed and incredibly frustrated with my body.

Not only did I feel weak, I now looked weak.

And I know that that may seem trivial in light of everything else going on here, but one of the things I’ve noticed with mold-affected patients I’ve been working with is the massive blow to their self-esteem that this illness causes.

People frequently report not feeling like themselves, feeling unsatisfied with their body image, feeling at war with their body or mind, and feeling hopeless against the (sometimes unknown) inflammation they are fighting.

I was super depressed and had no motivation to do anything. I struggled through workdays and spent evenings and weekends just vegging on the couch, unable to motivate myself to accomplish even the most basic chores and tasks.

What Did I Need To Do To Get Better?

First thing was obviously getting the mold under control. If you’re living or working in a water damaged building, you either need to leave, or get rid of all the moldy and damaged materials immediately.

No amount of supplements and detoxing your body will matter if you’re still being exposed to mold.

Once we started deep cleaning things, I also realized that I needed to deep clean myself.

As I started looking back at mold exposure in the context of chronic illness, I’ve had a number of chronic symptoms that have popped up over my life that have all coincided with a major mold exposure.

It may be complete coincidence, but it may not. All major illnesses or symptoms have a ‘trigger.’ Its quite possible that mold was mine.

And, based on what I’ve read from physicians who specialize in this type of illness, each successive exposure to mold provokes more intense symptoms in the patient, as sensitization increases.

The first time I was exposed to mold was actually in childhood after my grandparents house and farm flooded during the flood of 1993 that hit the midwest particularly hard.

Their entire home had water 8-9 feet up the walls and all their possessions were underwater for months before the river receded back to normal levels.

The family went to help get things cleaned out and recover what they could for my grandparents, and there we all were, me being about 11 at the time, handling mold-covered items for a couple days at a time, breathing it all in, getting on my skin, and clothes.

Within a year of that, I had what would be the beginnings of chronic IBS. I distinctly remember around that age experiencing really intense gastrointestinal problems, and my dad developed a number of chronic inflammatory upper respiratory problems, which he never attributed to mold.

Coincidentally, and I’ll never be able to prove this, but knowing now what I know, my grandmother developed really really bad neurological symptoms after that as well, once they moved back into the house.

She already had some mild tremors that I remember when I was a kid, but she declined rapidly after that flood and subsequent return to their home, despite the clean up efforts and rebuilding of some of the house.

I was also exposed at the house my family moved to when I started high school, with the bathroom I shared with my older brother having had recurring mold problems in one corner that never really got addressed.

It would get cleaned only for the mold to return right away days later. I think it actually still had that problem when they moved out 20 years later, due to poor ventilation, which could easily have been fixed, but just wasn’t.

I had some of the worst depression and anxiety during the four years I lived in that house. I’m sure I could chalk it up to being a teenager, but I vividly remember being unable to sleep for days at a time during those years, from just straight up anxiety. I had never had that before living there.

Next, I was exposed in military housing on the old decommissioned Fort Ord, while I was stationed at the Defense Language Institute at the Presidio of Monterey.

As a side note, it seems I have worked with more mold illness patients who have lived or worked in water damaged buildings on military bases than anywhere else.

This is unfortunately a well known problem in the military, and barely recognized by many commands as a significant threat to health. The base I drill at only just this year began to pay more attention to the state of housing for servicemembers in regard to unsafe conditions.

It was actually a well-known fact among servicemembers stationed there that the old base housing had black mold. And nobody did anything about it.

It was being slowly torn down and replaced with new construction, but the base authorities were still housing people in the old mold-infested housing while the new ones were being built.

Upon moving into the base housing, I had a persistent cough that lasted 2 months, constant sinus infections, digestive problems amplified, and major depressive mood episodes.

This is also when I noticed that I developed a really intense gluten-sensitivity, which would later become celiac disease.

After that, the next time I know for sure I was exposed to mold was at two different gyms I worked out at, between 2013-2016.

At one of them, there was actually water dripping from ceiling tiles into buckets on the floor. Like you could see pipes were leaking in the ceiling and the gym owners just painted the ceiling tiles black so you couldn’t really tell how bad the damage was.

Every time I was in there, I had pulmonary spasms. My chest would get tight, everything felt like it stopped for a second, then pressure built up, released, and I could breath again. But it felt like my lungs fluttered for a couple seconds.

The next gym I worked out at also developed water damage after a leaky back door near all the weightlifting equipment flooded the floor during rain storms, under the floor mats, and under the laminate wood floor. It even smelled moldy, but again, at the time, didn’t occur to me that I shouldn’t be there.

During both of those times, I experienced off and on depression and anxiety, but that’s also the point where I started experiencing the weird fluoride sensitivity and skin breakouts. I had intermittent hormonal problems on top of that, too.

About 1 year after leaving that gym, I finally started feeling clearer and energy started returning. But at that point, I still had no idea that that was what had been my problem.

Lab testing I had at the time should have been a big red flag, but I just wasn’t that well-trained to spot these things at that point in my career, so nothing clicked until years later.

Symptoms of Mold Toxicity

Since I mentioned at the beginning of this post that most healthcare providers aren’t going to think of mold exposure and mold illness right away, if you’re reading this and want to know if you’ve possibly been exposed, but not sure, here are the most common symptoms that would alert me that you may have something fungal going on:

  • Skin rashes or breakouts/acne
  • Anxiety
  • Depression
  • Fatigue
  • Weakness
  • Shortness of breath
  • Allergies/allergic reactions that suddenly develop
  • Chronic sinusitis
  • Digestive problems (especially constipation and bloating/gas)
  • Coughing that doesn’t resolve in a week or less
  • Elevated liver enzymes
  • Trouble sleeping
  • Sudden unexplained weight gain
  • Excess water retention
  • Upper respiratory inflammation
  • Irregular heartbeats/dysrhythmias
  • Memory problems/trouble focusing
  • Struggling to find words
  • Trouble completing thoughts

Toxic mold can cause a number of very serious health problems in humans and animals.

It primarily affects the respiratory, neurological (brain and nerves), integumentary (skin) and endocrine (hormones) systems, but can have broad effects on multiple organ systems in susceptible individuals.

Mold produces mycotoxins, which are highly inflammatory small molecules that absolutely devastate the body’s immune system and some of which can cause liver damage, kidney damage, and even various types of cancer, including breast cancer and liver cancer.

Now, many of the symptoms listed above can be from many different things, so its important to realize that just because you have fatigue, skin rashes, and weight gain, does not mean you definitely have mold illness.

I work for a laboratory in my full time job, which launched a cutting-edge Mycotoxins lab test early in 2019. It includes 31 mycotoxins tested, over 2x more than any other lab does, and its sensitivity and specificity are higher than any other lab, as well, which means that its basically the most accurate test you can get.

But, the important point here is that I was actually able to confirm my mold and mycotoxin illness through laboratory testing.

I can’t tell you how much of a relief it was when I could see quantitative data that this was not just all in my head.

The summary of my test results from February are below. As you can see, even 3-4 months after we got rid of the actual mold, I was still pretty sick. I actually had three different mycotoxins present in my body in elevated concentrations.

That’s the problem with toxic mold exposure, I began to learn.

Even after you’re no longer exposed to the main mold source, it can take a very long time to get better on your own, if you do at all, without some help.

Mold spores, when inhaled or otherwise consumed, can actually colonize various parts of the human body, forming what are called fungal biofilms, and then survive for years and years, if never treated.

Even after a mold exposure, you can still have mold living in your body producing mycotoxins, and making you chronically sick.

The upper respiratory tract, especially the sinuses, is one main point of biofilm formation. There are also case reports of mold and fungal biofilms elsewhere in the body, such as on implants (breast implants, joint implants, etc) and in connective tissue.

The anxiety was lessening as I began increasing my detoxification efforts and began incorporating a few key supplements, which I’ll discuss in a minute.

At this point, I was still experiencing horrible memory and focus problems, depression, digestion, and hormonal imbalances.

I even thought that my digestive problems were methane-dominant SIBO, because the symptoms were so incredibly identical. However, they did not respond to the typical treatment that methane-dominant SIBO does respond to, and now I know why.

I was clearly still not completely treating the root problem.

I also suspected that there were still some lingering mold spores in the air of the house, even after we did some major cleaning, once the temperature and humidity outside picked back up in the summer.

I purchased some test plates for the house from Micro Balance, a company that specializes in products for people who have been exposed to mold and who suspect they have chronic mold symptoms.

I was actually surprised to find that my own bedroom was the room that had the most mold spores still, and not the basement where the humidity was super high.

This actually made sense in retrospect, because despite deep cleaning and using these awesome air purifiers all over the house, when we replaced the ceiling drywall where the original leak had been, we didn’t seal up the gaps with drywall mud right away, because, again ‘we’ll get to it next weekend’ five months ago…

There were still some mold spores up in the attic that were coming back down into the office and bedrooms on the second floor through the gaps between the new drywall and where we had cut out the old damaged drywall.

Mold growth on plate after 1 hr of air sample collection and 6 days of being sealed and incubated out of direct light.

Now, in this pic, this level of growth is after 6 days (the test kit says to let it incubate for 5-7 days) and it is more than the ‘normal’ expected levels, but less than the levels expected of ‘high contamination’, according to Micro Balance’s website. So, its somewhere in the middle, but still more than it should be.

I could also tell that the spore count was higher inside because my head started itching uncontrollably. I had to take pretty high doses of quercetin every day to just not itch while I was searching for where the mold was still coming from.

That prompted me to start systematically washing all the clothes, bedding, and throw rug in my bedroom with the antifungal laundry additive from Micro Balance, and then re-deep clean everything (for the third time). I’ll retest the room in a month or so, to see where the spore counts are at that point.

I also nagged Jay into finally sealing up the gaps in the ceiling drywall, and just to be sure, I put one of those plastic sheets you get to weather-proof your windows in the winter, over the attic access.

Other Tests That Were Connected

Apart from identifying where the actual mold problem is coming from, I was also doing everything I could to support my body’s own natural detoxification processes.

The one major way that the human body binds and gets rid of mycotoxins is through the glutathione pathway.

Glutathione (GSH) is the body’s master antioxidant. Its production happens in cells and once it binds something toxic, it should head to the liver for the liver to excrete the bound GSH-toxin complex, either through the kidneys in urine or through the bile into the small intestine and then out with stool.

Glutathione levels will often be extremely depleted in someone with chronic mold toxicity. And mine actually had been ever since leaving that second moldy gym.

Lab testing from 2016 showing chronically depleted glutathione levels after leaving a second high mold gym I had trained at for a couple years.

I also had lab testing done at that time that showed auto-antibodies in my brain to cells in my cerebellum. The cerebellum is a part of the brain that has associations with gross motor movement.

At that time, I wasn’t having any major symptoms other than I would randomly drop things, it took me much longer to find my balance doing single-leg exercises, and my grip was getting very weak, especially when lifting weights.

Many mycotoxins can cross the blood-brain barrier, which is supposed to keep inflammatory and toxic elements out of the brain, but which, when impaired such as with concussions or other head trauma, can become ‘leaky,’ just like the gut barrier when damaged.

But, mycotoxins themselves can impair the blood-brain barrier, so, even if you haven’t had a head injury, they can still affect your brain function and nervous system.

When the blood-brain barrier is impaired, these inflammatory molecules will cause inflammation in various parts of the brain, as well as deplete GSH levels in neurons, which is one of the reasons why neurological symptoms are so profound during mold illness.

So all this added up to a bunch of vague symptoms that I didn’t really connect until the mold exposure in our house this past fall.

Getting Better One Day At A Time

I’ve talked before about the three P’s of detox:

  • Peeing
  • Pooping
  • Perspiring

Detoxification happens naturally through these pathways as the body eliminates waste through the kidneys, through bile into the GI tract and out with stool, and through exocrine glands in the skin when we sweat.

For those reasons, it is absolutely critical to drink a lot of water during the process of healing from mold. This helps you both eliminate through the kidneys (peeing) and sweat more when you need to (perspiring).

Sauna Use

My own home DIY infrared sauna

An integral part of my therapy incorporated the use of an infrared sauna I built in my basement. There are some toxins that the body actually excretes in higher concentration in sweat than it does through urine, such as heavy metals.

This also takes some of the total toxic burden off the liver and kidneys, and, if you’re someone who has some weak or low bile and has trouble removing things through bile-GI elimination, sweating can be an excellent supplemental detoxification therapy.

Binders

Now, its also highly recommended during mold illness therapies to use binders. Binders are products that you take orally that bind to mycotoxins which are released by the liver into bile and then into the GI tract.

Many people with mold toxicity or mycotoxin illnesses have impaired gut barriers.

Mold and other toxic fungi are known to disrupt the intestinal barrier’s integrity, and can cause hyperpermeability of the gut barrier (sometimes referred to as ‘leaky gut’), which can lead to resorption of the mycotoxins if there are not binders used to make sure they are not reabsorbed.

Commonly used binders include activated charcoal, cholestyramine (available by prescription), and bentonite or zeolite clays.

UV Light

I also added in UV tanning bed use, because mold is resistant to growth under UV light, and although there are really only some case studies of people reporting this being beneficial for them, I actually did find that I felt significantly better after each session.

And, because I know that tanning beds are implicated in skin cancer, I realize this is not for everyone, and my own use of it was just once weekly for 12 minutes for a few months until I felt like I was seeing significant recovery in my systemic symptoms.

You could, theoretically, achieve a lot of UV exposure if you spend ample time outdoors (1+ hr per day), but I find most people have trouble carving this out of their busy schedules regularly.

Nutraceuticals

All of the above activities were things I did to support detoxification, and didn’t really require me to do anything drastic.

But, they also will not completely treat or eradicate mold in the body, especially because they tend not to be strong enough to disrupt biofilms.

For that, I used a blend of antimicrobial and biofilm busting products both internally and in my nasal passages. I dosed these based on feel, as well as bodyweight.

I also used a high dose of liposomal glutathione that absorbs through the thin mucosal membranes of the mouth in order to ensure it gets into my bloodstream and can be used by all my cells, but also cross the blood-brain-barrier.

I also took that product and added it to the nasal spray solution of liposomal Biocidin, so that both had easier access to the blood brain barrier once sprayed into the ethmoid sinus.

Now, the above nutraceuticals were not the only thing that helped me heal, so even if you go buy them and start taking them, I would not be surprised if you don’t really feel any better.

This whole process was done through trial and error, reading countless studies and case reports on mold illness, adjusting doses to reach therpeutic levels, and keeping data on myself to see what worked and what didn’t.

I spent close to a year (and more money than I’d like to admit) figuring out what worked.

There were quite a few other supplemental nutrients I took, and still take, on top of diet adjustments I had to make temporarily, many of which would have to be individualized to each person, so I won’t go into detail here.

They would be based on what type of mold one is exposed to, the duration of exposure, and the individual symptoms being experienced.

One last note on remediating mold

If you think or know you’ve been exposed to mold, we can run that same mycotoxins test I did, and I can help you individualize a plan, too.

Beyond just removing the actual moldy materials and items in a building, you will have to clean everything else in that building because if the mold has become airborne, and chances are, it has, everything else has mold spores on it.

You will continue to be symptomatic until all the contaminated surfaces and items are thoroughly cleaned with antifungal solution, or thrown away. No exceptions.

If you move, don’t take anything with you that hasn’t been decontaminated.

If you stay where you are, the process is daunting, but not impossible. Moving was not an option for me, as that’s my primary residence and it was just not possible to also pay rent somewhere and try to bring our dogs with us.

Even after removing the moldy ceiling material, I was still experiencing lingering cognitive and neurological symptoms, and my head would itch like crazy, every day, inside the house.

The final step for me in getting the house totally cleaned up was to rent a mold fogger from Home Depot, and get 5 gallons of Concrobium. I fogged the entire 3000 sq ft of the inside of my house, but first fogged the entire ~1000 sq feet of my attic.

Concrobium is a mold-control solution that kills active mold spores by suffocating them all the way down to their roots/hyphae, but also prevents regrowth of new mold when coated on any surface.

This took approximately one whole day to go room by room and let the fogger spray a concentrated mist onto every surface in every room, rotating it every 5-10 minutes to hit all corners and angles.

The very next day, my head no longer itched, and I noticed that I was able to focus more intently on tasks, my mood lifted significantly, and I was able to wake up much easier in the morning.

I actually remember texting my husband and saying “Its like night and day difference for me.”

In less than 24 hours.

These are little things, but have been so powerful after basically a year of feeling like my body and brain are quitting on me and everything was hopeless.

I plan to re-fog the entire house at least a couple more times in the next six months purely out of caution to make sure that this problem doesn’t return anytime soon.

Did this story resonate with you?

If this story sounded familiar because you or someone you know has gone through something similar, leave a comment or feel free to forward it to anyone you think it might help.

If you suspect you’re currently suffering from mold illness, and want to get some lab testing done and work on getting past it, head over to my Work With Me page and send me a note.

I’m putting together a program that will simplify this whole process from start to finish with everything you need to confirm whether or not mold is your problem, get it out of your home and body, and get better. If you want to be one of the first people to start feeling better with me, let me know!

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