What Mold Toxicity feels like, from symptoms to shame.

naomi-august-138149-unsplash.jpg

By PJ Harlow, Holistic Mold Consultant

44 Minute Read.

Mold Toxicity.


The Crux of my decline in health. The thing that finally took me out.

The little black spots that I had no idea were really that dangerous. The thing that destroyed my family’s life, taking our home, health, and everyone we knew with it.

Mold.

Stigmatized and feeling ashamed, my husband and I battled this mold war primarily alone. The rabbit hole we were about to fall into lead us to an entire world that was completely unknown to us at the time. Maybe it is to you right now.

For the sufferer, mold toxicity can be overwhelming, isolating, painful and also relieving believe it or not. When I finally had a name to match the laundry list of symptoms I had spent years of my life struggling with, I felt a sense of justification within all the cluster & confusion.

In fact, it was a huge justification. I wanted to scream to everyone who doubted me, to everyone who didn’t think I “looked sick”, and to everyone that said this was all in my mind…“I TOLD YOU I WAS SICK!”

When you go from being an active, professional woman, wife & mother… to feeling like absolute shi* and you don’t know why, and your doctors don’t know why, it’s a journey of its own trying to figure out what “it” is. One door closes and 3 more open when you’re dealing with mold though. It’s equally a trigger, as much as it’s an illness.

As if it’s not bad enough being sick during the prime of your mid-life, those who find out it’s mold toxicity that ails them, are gaslit by everyone they tell, including doctors and professionals in both the health & wellness industry, and the building/mold industry!

I wished more health practitioner’s in mainstream medicine were at the very least opened minded, or supportive, but they just aren’t educated, or they don’t want to admit their suspicions or that they know. It’s still largely taboo to be sick from mold.

mold+toxicity+isnt+real

“Quack Science”…

I heard that one enough times to make me wish I had a special device to make people feel exactly how I did.

Then, they surely wouldn’t be saying this wasn’t real.

Environment needs to be recognized as a root cause of health issues, because it is.

In reality, our world is not the same place it was - even ten years ago. It’s far from the space in my memories, growing up in the 80’s and 90’s. Our planet is now sick and toxic, our HOMES are now sick and toxic, we are now sick and toxic, and mold sickness, mold toxicity... it’s absolutely real, very real.

According to Dr. Andrew Heyman, MD., Director of Integrative Medicine at The George Washington University, and renown Mold Illness Expert:

“Forty million people and half the homes in the U.S. have a mold problem.”

Forty. Million. People.

A little louder for the people in the back…

That statistic blows my mind every time I read it, and I believe it’s even more based on what I see in my own clientele & practice. You know what that means though?

You know someone personally who is affected by mold.

“Show me the research”

Just as relative, after analyzing data from a nationwide sampling of office buildings, there were confirmed correlations between building conditions and worker symptoms that, if causal, “would suggest an increase in symptoms among the very large proportion of the U.S. workforce that is employed indoors” (Mendell and Cozen 2002).

In June of 2020 it was announced that more than half the schools in the United States need to update or replace multiple systems in more than half their buildings, and failure to address them could pose health and safety problems for everyone inside. The report, released by the Government Accountability Office (GAO), is the first study of school infrastructures since 1996!

It showed that heating, ventilation and air conditioning (HVAC) systems were the issues most in need of repair. That’s 36,000 school buildings with HVAC issues, which is one of the top causes for mold toxicity in my health coaching clients, and one of the most common places of mold growth indoors, worldwide.

Another analysis of office building data indicated that 30 - 50% of office environments in the U.S. have suffered from water damage (Mendell 2005) and a separate analysis of office buildings found:

  • 85% of the buildings had past water damage

  • 43% had current water damage (Cox-Ganser, Park 2011)

moldquack

Realistically, people already know there’s mold in their homes, schools, work places, offices and buildings.

The harmful thinking or shall I say, the denial that continues to be perpetuated is that:

“Mold is harmless, and getting sick from mold is either an allergy or extremely rare. If one does get sick, it’s usually only respiratory problems - mold toxicity is just not a real thing”. - Most Westernized Doctors & Health Professionals

Why doesn’t anyone believe me?

Since originally writing this blog post, a lot has changed.

Years have passed since we got sick. We are mostly healed and thriving. When I say mostly it’s because healing is a lifestyle, not a destination.

I am now a certified holistic health practitioner, trained and educated in functional medicine. I am a practicing international holistic mold consultant, and a renown home-health expert.

Peter Harlow, my husband and co-founder of PJ Harlow Wellness Inc., is a certified, IICRC Applied Microbial Remediation Technician, and a certified IICRC Water Restoration Technician. He works side by side with me consulting.

In 2020 and 2021, we worked with over 1000 families, helping them to identify the sources of mold & toxins in their homes, teaching them how to eliminate, separate & decontaminate their possessions, transition their children and loved ones through loss, allow space and validation for their genuine feelings, and ultimately empower them with the knowledge of how to create (and sustain) a healthy home microbiome & environment so they are actually able to detox properly.

We’ve worked with teachers, social workers, therapists, nurses, doctors, lawyers, stock brokers, warehouse managers, moms, nutritionists, bartenders, servers, programmers, health coaches, influencers, celebrities, yoga instructors, fashion designers, architects, students, kids, retired folks, New Yorkers, Californians, East Coasters, West Coasters, Europeans, Canadians, Aussies & many, many more who have all shared with me that their workplaces, schools &/or homes have had water damage and mold problems that have heavily contributed to the downfall in their health.

Not to forget the alarming amount of sick military families who have also shared with us their stories of neglected base housing conditions, which is too commonly denied, gaslit and not spoken of enough.

And guess who is affected the most?

Women.

Why are women more affected by mold than men?

In my own environmental & mold consulting practice, we specialize in working with individuals who are dealing with mold illness, CIRS, mold colonization, EAI and other chronic illnesses. I hear the same, repeated stories everyday: women across the world are reporting to be sicker, and are more symptomatic than men. In some cases, men are not reporting symptoms at all. 


Men can and absolutely do get sick, but women are affected faster, more intensely and in more numbers. So, what’s the deal? What are some of the reasons? There are many contributing factors, but here are a few more predominant reasons why women become toxically sick faster and more intensely than women.

Women seek out healthcare more, and men are less likely to report health issues or talk about symptoms. Something we also see in our practice frequently is the normalization of feeling unwell. 

10 Reason why women are more affected by mold than men:

  1. Biologically men feel a strong urge to provide and protect and may feel personally responsible for the possibility of the home having mold, (often psychologically) therefore defensive and quick to be in denial when his partner is suffering.

  2. Pregnancy, birth trauma and breastfeeding deplete essential vitamins & minerals like magnesium & thiamine which lowers the immune system making women more vulnerable to environmental toxins and infections.

  3. Chronic inflammatory responses from mold toxicity upregulate aromatase. Aromatase is an enzyme that converts androgens like testosterone into estradiol. This process causes testosterone levels to drop, often causing the body to hold onto estrogen, therefore causing estrogen dominance. 

  4. Higher testosterone levels (in men) are associated with less autoimmunity.

  5. Mycotoxins either mimic or block the receptors for hormones including estrogen, testosterone and thyroid hormones. Women are in a metabolic crisis long before women are even exposed to a water damaged building, and they likely already have some estrogen dominance and thyroid problems.

  6. CBS & COMT Pathways are critical for clearing toxins & all estrogens, via proper function of the liver and cytochrome P450 (CYP) enzymes. Mycotoxins are major disruptors of these detoxification mechanisms. Aflatoxins are actually activated by P450 enzymes, catalyzing them to be carcinogenic.

  7. Most women with mold toxicity, don’t just have mold. There are many toxins that are endocrine disruptors: glyphosate, BPA, heavy metals, etc. (This is also true for men, but considering the other factors his, this amplifies the experience for women.)

  8. Women are twice as vulnerable as men to stress-related disorders, Mold toxins may up-regulate or down-regulate cortisol production.

  9. 80% of women wear cosmetics everyday, with all women using an average of 12-16 skin care products daily. Women are also more likely to get cosmetic plastic surgery, putting more stress on the body. Some women have breast implants that may become their own source of mold.

  10. Mold toxins have a strong affinity for fat cells and women have on average 6-11% more body fat than men.

Copy of Beauty Facebook Ad Creator Part 2-78.jpg

So why isn’t this all across the news?

The irony comes in here, and it simply comes down to a fact, that cannot be made any clearer:

Mold illness is an illness that isn’t profitable…

In our story, regardless of the facts we produced, our lengthy explanations, my binders and notebooks full of labs & valid research, little to no one took us serious, and it’s shameful.

My MOLD symptoms.

Preface

Let me preface this section by pointing out some things that never made sense to me until after all this happened.

Ever since I was a teen, I had symptoms that kind of waxed and waned.

Ones that I was not always able to articulate or describe. Ones that would come and go.

In fact, my family even made jokes about me, saying I was a “hypochondriac”.

So when I moved into our moldy home, and my health suddenly went from normal to awful, I felt like the boy who cried wolf.

Much of what I believed to be “normal”, was not. I had no idea what “well” was, or how to identify my own baseline. I denied my own body’s warning messages of toxicity for a very long time and thought “this is just who I am”.

From crippling anxiety, fatigue, endometriosis, chronic pain, joint pain, insomnia, difficulty with learning & comprehension, poor memory, lack of focus, brain fog, hair loss, restless leg syndrome and even unexplained seizures.

This is part of the problem though, we NORMALIZE feeling like shit.

normalization+sickness

My Hands hurt.

My first symptoms in our moldy home were in my hands. They started aching, almost pulsing throughout the day at work. It would come and go. On and Off. I had similar pain, years before, but it was always a random thing, never consistent or constant.

I really became aware when I woke up one brisk autumn morning and they were stiff and swollen. It took a solid 5 minutes before I could bend them.

I noticed my grip was weaker, and I struggled to open jars, turn heavy door knobs and grab onto weights at the gym. First it was my right hand, then both, but I still didn’t think too seriously about it.

“Do I have carpal tunnel?”

Pretty rapidly, the pain navigated up into my wrists and elbows. Years of typing was bound to have caused me to get the techno-ergonomically-incorrect syndrome… right?

That was my first excuse.

We do a lot of that these days, make excuses for why we feel the way we do…

Then when my back, feet and knees began to ache, I thought to myself:

“Maybe, I am just getting old…”

I actually thought that.

At 40.

Really.

For the record, we shouldn’t be feeling “old” even when we are “old”.

I was even embarrassed to say anything to my husband at first.

I had recently hit the big four-oh, which for me, was clearly not a celebration. The thought of aging physically so soon really made me feel more self-conscious, and took a deep stab at my already weary self-esteem.

“I think I need to see a doctor.”

Soon enough I was plagued with enough pain, enough fatigue and a handful of weird things happening to my body that I spoke up and shared, “I think I need to see a doctor”.

I was exhausted all the time, and my 6 day a week gym habit dwindled down to none in a matter of weeks. I had just recently gotten health insurance, so I didn’t even have a family doctor set up. This made my first appointment wait longer & it was 6 weeks before I could get in. By that point I had been keeping a diary of my symptoms, and lists to keep everything straight so I wouldn’t forget.

I seemed to be forgetting a lot during that time.

My actual diary and lists from late 2016 to January 2017

It’s all in your head.

I explained everything to my doctor.

We went through what seemed like 50 tubes of blood, nerve testing, MRI’s, more blood tests until finally on my 3rd trip back, he told me the same thing he had said the last visit.

“Everything came back normal”.

gaslit by a doctor

He then proceeded to tell me that he believed my symptoms were “real to me”, but that they weren’t “actually real”. I was experiencing what he believed to be “a psychosomatic disorder”, and perhaps, “I should see a mental health professional”...

I looked at him with my famous left eyebrow darting up, “What’s that supposed to mean?”

He responded swiftly, “It’s all in your head".

I started to well up, my bottom lip uncontrollably quivering - just like it has since I was a little kid.

“DON’T CRY, DON’T CRY!”, I screamed in my thoughts.

Not knowing what to do, I sat there, mute.

Tears streaming uncontrollably now, unable to even respond. I couldn’t comprehend his BS diagnosis and as he let himself out, I caught the glare of the nurses looking at me as he shut the door behind him.

It was like they all knew I was the “token hysterical woman”.

That morning, I was in such excruciating pain that I barely even got to my appointment. I rushed to gather my things, walked past the nurses station with my head down and left. That was the last time I would ever leave a doctor’s office without assertively letting them know they were wrong for treating people this way, for treating me this way.

Listen to your body

On the way home, of all things to start radiating with pain, it was something new… my butt cheeks.

I thought to myself, really?!

My gluteal muscles hurt so bad I kept having to switch the pressure on each side while crying and driving.

My knees were throbbing, and the light was so bright I couldn’t be without sunglasses.

I was at a point of transformation right then, because the system I had trusted for so long was now failing me.

So, I had to make a choice:

  • Doubt myself and trust this guy who spent a whopping total of 22 minutes with me over 3 appointments, who couldn’t tell you a damn thing about me, my background, or my life.

    OR

  • Trust my own intuition, listen to my own body, honor myself and recognize the woman who has been self sufficient for over 2 decades. One who is intelligent, organized, reliable and knows without a doubt, that something just isn’t right.

    I didn’t know all the answers then, but I was determined to find out.

I think you know who I listened to.

gaslighting the sick

While I know there are some really fantastic doctors, MD’s, RN’s and professionals out there, unfortunately everyone that I had met with was wrong.

Over 20 of them, to which the majority made very poor, ego-driven, non-critical-thinking judgments with my case. In fact, one of them, after a 4 minute appointment assessment, automatically presumed that my motives for being there was to get narcotic pain medication…

WRONG. WRONG. WRONG.

Again, I wanted to SCREAM in frustration, I didn’t want to “mask” my symptoms, I just wanted to know what was causing them!

homehealthcoach-14.png

The gaslighting that often happens to women when doctors can’t find out what’s wrong is All too common. I have spoken to hundreds of women, ladies, & females who are all intelligent, & distinguished, and in no way suddenly decided to ‘fake’ being sick.

They all have the same story.

Ya know, us girls, us women, us females, she, her, hers; we just like to “make up stuff”. (insert multiple sarcastic huffs)

  1. Why are we all lumped together and presumed to be natural-born-hypochondriacs?

  2. Why are we viewed as weak?

  3. WHY is it that women are perceived as sooo incompetent that we cannot be held accountable for our own bodies when they are not functioning properly, or even when they are?

“C’mon! I can’t walk without limping, every shoe I own hurts my feet. I’ve developed a stutter, I can’t do math anymore and I have trouble forming sentences at times. I can’t keep my eyeballs open and I could sleep 12 hours and not feel refreshed. Tired is an understatement, brushing my hair is daunting at times. My bra hurts, my skin burns and my legs zap with electro-shocks, while my whole body is in pulsing in pain. I have so much anxiety that I jump when someone sneezes, I have night terrors every other night to which I wake up in a pile of sweat, screaming and crying. I brush out gobs of my hair after I shower, and I suddenly feel like I’ve been forced into menopause. I feel like I am 98 years old and I can’t for the life of me remember what I was doing 5 minutes ago!”

-Me, to the everyone that didn’t believe

Men get gaslit too

I am in no way excluding the men out there who are sick.

As a health coach practitioner, I currently have many male clients with mold toxicity & have listened to their stories of disbelief & gaslighting too.

My husband’s own family doctor doubted him when he explained that he had recently been diagnosed with Mold toxicity, CIRS & chronic Lyme Disease by a functional health practitioner.

He brushed off the entire existence of all three!

The doctor condescendingly smirked, as my husband explained he had not been bitten by a tick recently, and couldn’t recall ever having a bullseye rash.

After this heated conflict about chronic Lyme, my husband’s physician agreed to do the Western Blot Lyme test, but ultimately we knew he was just agreeing in an attempt to prove Peter wrong.

At the next visit, when reviewing the results, this same doctor was shell-shocked to learn that Peter’s testing came back CDC positive…

My husband will never forget the look on his face, he was floored.

With that said, gaslighting does happen to men too, there’s just a definitive disgrace associated with being a “sick woman”.

RULING “EVERYTHING ELSE” OUT

About 7 months into being sick, and after determining that I didn’t have any else, I finally got diagnosed with Fibromyalgia by a Rheumatologist I was seeing. I was still really perplexed about how I got it though.

The definition of Fibromyalgia itself is “a grouping of symptoms”.

  • No real, measurable or traceable root cause, it just “happens”.

I was told to meditate my pain away. Seriously.

Fibromyalgia is a diagnosis that is more notably associated with women, (but men can get it too) - just like mold toxicity.

Fibromyalgia carries a stigmatic association that anyone with this diagnosis is somehow a person with no integrity or credibility. I became quickly aware of this when my own circle began treating me with this “hypochondria” type of vibe when I announced my diagnosis.

It was as if people were justifying that my illness had no weight to it.

Dulling down my excruciating pain & laundry list of symptoms.

“Oh it’s Fibromyalgia, that’s no big deal, I had that a few years ago and I just started exercising and now I’m fine.”

or my personal favorite…

“At least it’s not Cancer.”

This collective demeanor came with complimentary eye dodges to avoid looking at me directly, and apparent physical gestures to let me know: they don’t get it, not at all.

pieces of the puzzle: Trauma

I felt so alone and was deeply grateful for my husband.

He was my rock, and got even more upset at my treatment from doctors and people’s hollow acknowledgments.

I was deep into research, going down the rabbit holes of my only lead at the time, my existing PTSD.

My teens & twenties were permeated with trauma, loss, abandonment, isolation & abuse, with my very first long term relationship being brutally violent. I had been surrounded by narcissists and misogyny, spending a big portion of my life after that stuck in never-ending cycles of co-dependency, perfectionism, addiction & people-pleasing behaviors.

I was convinced my past had something to do with my body suddenly betraying me.

people-pleasing behavior

I was very aware of psychological manifestations, but this was not that.

It wasn’t the answer.

I had been in therapy for over a decade, and notably spent 3 years working intensively with a psychologist one-on-one, attending group therapy 4 days-a-week and in addition to that, I even worked with a mentor.

I even coached & worked one-on-one with OTHER women and young girls myself, who had been through similar circumstances.

I did everything I was supposed to do, and this was all done well before I became chronically ill.

So why now?

I had been the happiest I ever was, and in the healthiest relationship of my life. I just got married, like literally, the month before I started to get symptoms. We had been planning to extend our family, I even got my first-ever flu jab a few weeks prior thinking this was the “proper” thing to do before having another child.

That decision to get jabbed was a disaster, and in retrospect I believe played a part. I reacted horribly and spent 3 weeks with a huge steel-like plate of inflammation under my outer bicep, unable to move it, with a 104 fever to match. I even had to go to the ER.

I never put its contributions together until much later, but continued on thinking trauma was my sole root cause.

I wasn’t entirely wrong, and would learn later that: Everything plays a part in a person’s toxic load.

my family’s mold symptoms

“A million excuses”

By late spring I was more accepting of my Fibromyalgia diagnosis and began to blog on Instagram. I felt so isolated, and I’d hoped to find relativity, offer my own experiences, and possibly find some friends who could understand me.

Acceptance was something I wrote about often, but it was one evening that made me begin to question it all, once again.

My husband Peter started to become symptomatic.

I remember we were contemplating buying a really expensive new bed at the time, because we both kept waking up stiff and sore. Naturally, we thought it was our “old bed being the problem”.

toxicmoldsymptomsbackpain

You’d think we would of figured this all out sooner, but it doesn’t happen that way. We made a million excuses as to why we felt the way we did, we NORMALIZED feeling awful, and it wouldn’t be something we would puzzle together until after it was almost too late.

Chronic Pain & Low immunity

In March of that year, Peter’s appendix ruptured, and he was in the hospital afterwards for over a week with an E .coli infection from the surgery. Soon after he started wearing knee braces on both legs, a back brace and was getting cortisol shots in his shoulders. We honestly joked about having a wing named after us in the hospital.

It seemed we were there constantly.

Mold Rage & unexplained anger

Pete was really tired, constantly irritated, and frustrated a lot. He thought it was all possibly stemming from work stress, but nothing had really changed at work, it had always been a stressful job.

I noticed the drastic change in his patience level.

I remember one night he said to me, “I don’t understand why I feel so mad all the time. I’m just so tired and my joints are always sore.”

It was really out of character for him to lose his cool over small stuff. Out of us both, he was always the calm one.

Neither of us could remember a thing, so there were Post-its stuck everywhere, as we joked that, “we were so old, we had lost our memories.”

It got to a point with his pain that we were wondering if he had Fibromyalgia too?

The kids get Mold-sick

Then there was the the kids.

The kids were always sick. We believed our pediatrician when he told us it was “normal” for a child to have migraines everyday, nosebleeds 4-5 days a week, frequent stomach aches and to suddenly gain 20lbs in a month.

It was “NORMAL”, just a “lack of protein”.

mold+bloody+nose+symptoms

Our then 13 year old daughter suddenly had immediate onset “asthma” (air hunger), OCD, anxiety & panic attacks, fatigue, agitation and weekly headaches. That was “normal” too, no big deal.

Our pediatrician would blow off all of my concerns, and go into diet when we were already on an organic, gluten free, vegetarian diet. We ate healthy, and I was well aware of our nutrition levels, as well as the balance of our families protein/carb/fat intake. I spent years counting macros in the gym.

I knew in my soul that wasn’t it.

I felt insulted that our pediatrician of over 15 years didn’t take my concerns serious, but I still didn’t question his ‘expertise’ at the time. He had the degree on the wall, and the MD behind his signature, but I didn’t let it go completely.

I even asked him directly about mold once, in curiosity. He explicitly told me that it was “harmless” and could only cause “allergy symptoms for some sensitive people”. His arrogance was passive aggressive, and thick with a tint of sarcasm.

He scoffed my countering concerns and reiterated that, “no way did mold a cause of my sons migraines, sudden weight gain, GI issues or bloody noses”.

Mold takes over marriages

My mommy spidey-senses were off the charts, and the only person who really understood, was my husband Peter. I can’t even express how much respect, and gratitude I have for him for taking care of me, and all of us. I can’t imagine having to go through this alone. The most important thing for me was that he believed me. I honestly don’t know what I would have done without him.

Many don’t have the support of their spouses/partners. The “common-think” is that most wives, girlfriends or partners are overreacting, exaggerating or making a big deal of nothing.

82% of the women we work with have spouses or partners that don’t take them serious.

In many cases mold can cause divorce, break-ups or complete disintegration of the relationship.

I have seen some women flee, usually with the children if any, and the spouse/partner (who usually isn’t noticeably symptomatic) stays with the sinking ship. It can get even more complex & stressful if a child or children are tox-sick, and their birth fathers don’t agree with treatment.

That’s a story I will save for my book.

mold ptsd

The shi* day at work that saved our lives.

In late October, I had taken off work to take my son to the Neurologist for his migraines and nose bleeds. After the appointment, we stopped at Dollar Tree for school project supplies and to Walgreens to pick his new prescription to Topamax. It was raining and all I wanted to do was lay down with the heating pad when I got home. Peter arrived home at 6ish, and was clearly in a bad mood from work. Usually this was our “us time” that we set aside to vent about our day, but that would have to wait since we had poster board, markers, tape and materials spread all over the dining room table. He briefly told me about the frustrations he encountered and headed for the shower.

My husband is 6’2”, and I am 5’1”, so just to give you a visual, every time one of us gets in the shower, it’s necessary to adjust the shower head. On that day, Peter happened to use a little more force than usual, since he was still reeling about his shitty day at work. When he did that, the shower head broke off into his hand. Water gushed into the wall for about 5 seconds before he quickly turned it off.

Meanwhile, on the other side of the wall, I heard a “pop” sound and all of a sudden the electric blew out. Something had tripped the breaker. I turned to the kitchen intently listening to what sounded like rushing water. Then I heard F**k! coming from the bathroom. After figuring out what happened, I looked up to Peter coming around the corner holding a towel around his waist. He ran upstairs to throw some clothes on as I went to get towels.

After reconvening in the kitchen, Pete pulled our oven back while I wiped up the water that leaked out of the wall onto our floor. We were inspecting the damage when we both turned to each other perplexed. The wall that was now revealed was totally saturated. Like too saturated for the shower incident to have made it that wet. I could practically push my finger through the drywall in some spots. The amount of water that spilled was less than a towels worth to clean up.

My brain was spinning, I could see Peter’s was too.

We had never pulled out the oven or saw behind our counters since we moved in. It had been 3 years of us living there and we were immaculate renters. Both of us super clean freaks, we would clean on top of one another’s cleaning. As we looked closer it was truly like another world back there. Dusty, spiderwebs, and then then we saw it. Peter and I both zeroed in simultaneously. There were Black spots on the sides and bottoms of all the cabinets.

“Baby, go get the flashlight”…..

I scurried to grab it as quick as I could and hurried back to the kitchen and passed it like a baton in a marathon race. Peter and I do our best work together during a crisis, but we were certainly never prepared for what we found next.

I can still hear the double click of the flashlight echoing as it shined back into the skeletal parts of our home.

There it was, tucked neatly behind the other cabinets, hiding from our sight, deeply penetrating the exterior of our drywall.

A colony of black mold.

We couldn’t believe it, we were so pristine, so clean, so how could this happen?

Little did we know that our shower had been leaking for an unknown, extended amount of time. The leak went down into the wall between our kitchen and bathroom, into the sub-flooring, into the crawlspace, the entire bathroom floor, under the tub, & into our son’s room. To top it off our dryer hose was detached under the house, creating the perfect recipe for Stachybotrys - constant moisture, no ventilation and humidity. Our crawlspace had become a thriving, competitive hotspot for mold.

The more we looked, the more it was everywhere, inside the walls of our house, on the underside of the sub flooring.

And, just like that…

We knew it was mold that was making us sick.

Actual close up photo of what was behind one of our cabinets, bleeding through the drywall. Black Mold (Stachybotrys)

genes load the gun, Environment pulls the trigger.

One of the biggest mysteries surrounding Mold Toxicity is its ability to mirror so many other illnesses. There are thousands of people walking around with Alzheimer’s disease, Parkinson’s, Celiac, Endometriosis, Psoriasis and Eczema, Depression, Anxiety and other mental illnesses, Autism, Dysautonomia, POTS, Leaky Gut, Obesity, Asthma, ADHD, and Allergies that all could be related, or rooted in mold exposure, yet people simply don’t know this critical Information.

As much as it’s said to be ‘rare’, it’s not rare at all.

In fact, mold and a person’s environment should be one of the first things doctors look at. I find it oddly strange that no one evaluates that in western medicine. No one ever spent any time asking if I had been exposed to chemicals, a water damaged building, a moldy house, or anything else closely related to environmental toxins.

We are all taking in toxins on a daily basis, through our air, our water, our soil, our food, our products, our homes, and buildings.

You’d think since we spend 90% of our time indoors that ‘environment’ would be a determining factor or contribution to our health in mainstream medical thought, but you’d guess wrong.

A large amount of the illnesses that are being tossed around, “autoimmune this, autoimmune that, thyroid, leaky gut, migraines, hormone issues, mental health, etc.” - it’s ALL rooted in environment.

The awareness surrounding mold toxicity has skyrocketed within the alternative health, biohacking and functional medicine communities online in 2020 alone, but the affects of mold and mycotoxins on health still has a really far way to go before it saturates the mainstream. It’s both incredible, and alarming to see just how many people are surfacing with mold toxicity.

Why am I sick, but no one else is?

For the longest time, we have blamed genetics for everything. One of the factors in why some people get sicker than others is genetics, but it is not the only factor, or element that can cause someone to have mold toxicity. I think there are some blurred lines as to what genetic susceptibility actually means.

About 24% of the population, have a specific haplotype, that makes them (me, Pete & the kids) genetically more susceptible to mold toxicity. This genetic susceptibility can makes our immune systems struggle to identify toxins, and similarly, have difficulty excreting those toxins. This is a reason why I got sicker faster than my family, but they have the gene too…so what’s up with that? We will get to this later.

The HLA DR Gene

We all took the HLA (human leukocyte antigen) DR blood test in our family, and we all came back positive and “multi-susceptible”.

This meant our bodies cannot produce the antibodies to detect or detoxify mold, mycotoxins, biotoxins or certain bacterias like Lyme (Borrelia) properly. For example, this could mean that the mold I was exposed to when I was 7 years old could still be stuck inside my body! As my friend, Dr. Jill Crista says, “the body is either in a state of accumulation or detoxification.”

This is a factor as to why some people can be exposed to mold in the same conditions, same time frame, the same house, the same everything, and they are totally fine, whilst another member of the house is totally sick. It’s not to say that eventually toxic mold won’t make the first person sick, because it can & will, but the point is mold & toxins, impact everyone differently.

People like us though, MOLD can take them out.

Hard.

What is toxic Load?

You can spend your life from birth until now, being a product of your environment. Think of your body as a bucket. (It’s the most visual way I can explain.) Everywhere you go, you add a bit of toxins to your bucket. Little by little, day by day, you begin to fill-up.

Toxin here, toxin there, toxin, toxin, everywhere.

Your bucket is filling up quick. So what do we do?

I know, let’s unplug the hole in the bottom and let out some of the toxins before you overflow!

But wait, your plug doesn’t work, it’s clogged and stuck shut. So you keep filling, and filling, and filling up your bucket. It becomes harder to function when your bucket is almost full. You can’t move as freely as you could when you were half full. You continue to fill up until one day, boom - You overflow.

This is what happens to a person who can’t detox properly…in so many words. Just like we covered above, some people can’t get rid of toxins that well, it could be genetics, or in some cases, mycotoxins can actually BLOCK someones ability to detox. The mycotoxin, ‘Ochratoxin A’ does this. So if a person is living in a moldy house, and they have Aspergillus Ochraceus dominating their HVAC system, their detoxification pathways may be hindered. This means they are taking in toxins faster than they can excrete them. This means those toxins are bound to fill up sooner or later, and they get sick, or worse, they stay sick.

What is detoxification really?

The body is supposed to break down toxins through “detoxification”. We actually do this with lot’s of things, even our hormones and vitamins. Something simple like a Tylenol even gets ‘detoxified’.

For some people stuck accumulating, there are so many toxins circulating that the body starts to recirculate toxins. This is when mycotoxins are processed by the liver, but instead of being ushered out of the body, they are reabsorbed by the intestines and then circulated back to the liver for a repetitive cycle that beats up the body, and the organs that are primary for detoxing.

Elimination (Detox) Organs

  • Liver

  • Kidneys

  • Gastrointestinal System

  • Lungs

  • Skin

  • Lymphatic System/Glymphatic System

This is an example of TOXIC LOAD.

It’s WAYYYYYYYY more complicated, but for the sake of this article, I’ll stick with brief, simple explanations.

There are lots of other toxins that contribute to toxic load.

Pesticides, insecticides, heavy metals like aluminum, mercury (fish, amalgams), arsenic, cadmium, chromium, lead (water), chemicals from products: laundry soaps, fabric softeners, perfume, lotions, cigarettes, alcohol, air fresheners, diesel, pollution, VOC’s, formaldehyde in furniture and building materials, pharmaceuticals, etc.

You get the picture.

Just because, I want to express that it’s not just toxins that contribute to “toxic load”.

Stress from life, finances, and/or work, the simple fact that everything is harder these days. Maybe like me, you’ve had some past trauma in your life.

Those types of things, your body remembers.

It carries emotional baggage like a stone gargoyle on your shoulders.

ALL of it contributes to the total toxic load or toxic burden a person has.

Untitled design (5).png

The Result of toxic overload

What can happen?

You may become chemically sensitive, your nervous system isn’t firing right, and you may begin to have leaky gut. Your detox pathways become impaired, epigenetics cause genes to express (turn on) stimulating autoimmune illnesses. Viruses (like EBV) that you were never were sick from, but exposed to, get “reactivated”. Opportunistic infections (like Lyme, Bartonella or Mycoplasma) can start to take over.

You get fatigue, chronic pain, skin rashes, hair loss, cognitive issues and you become ill.

This is just a minimum of what toxins can do.

Mold, the enigma that it is, can very much be a trigger and an illness.

Mold allergy vs. toxicity

Like me, I am sure when you originally thought of ‘mold illness’, it was related to some kind of allergy.

Mold toxicity is NOT an allergy though.

Mold toxicity, to put in a more basic format, is literally being poisoned by mold & mycotoxins. It is not an allergic histamine reaction, hence why allergists won’t be helpful to you.

There is a massive amount of research in the field of livestock and animal husbandry when it comes to mycotoxins & their associated health effects. It is almost unfair that this billion dollar industry exists, yet in the human medical field, mycotoxins are denied as being harmful or even recognized as a problem for people.

Why?

Mold is profitable in this aspect. At least that is my guess.

Do I have symptoms of Mold toxicity?

Maybe.

I went over most of my family’s symptoms in this article, but there are many symptoms we didn’t cover.

If you’re curious and feel like you may have been exposed, some people have clusters of symptoms with about 4-5 symptoms. They can be constant, or they can come and go. Some people don’t have many symptoms, some may just have one. You could be the only person affected in your house, while everyone else is ‘fine’. You could be the fine one.

Everyone is affected differently from mold.

I must express that there are many layers to this, and there’s a huge learning curve. It is why so many people struggle so hard (and a big reason why I wrote this, and why I do what I do).

Mold toxicity isn’t likely to be recognized, or diagnosed in the mainstream. As we have described, most doctors simply aren’t educated. And for those who do know, it gets complicated with this illness still being taboo. While there are some who do want to help, they just don’t know what to believe.

If you think you may have mold toxicity, reach out to us or keep reading:) If you want to get tested, we can help, or we can point you in the right direction regardless. (Check out our website beyond this article, it has a ton of FREE info. At the end of this article I have listed a very comprehensive list with links to many of the vast symptoms and illnesses that are associated with Mold Toxicity.)

Mold Toxicity Symptoms List

Testing for mold toxicity

There are different ways to test for mold, but the most accurate and useful test for evaluating mold toxicity is a Urine Mycotoxin Screening (we actually offer this testing here & more toxin testing within our coaching practice).

As we have touched on, your normal doctor isn’t likely going to have access to this test, let alone know about it.

For now, if you are curious about exposure, there is a simple at-home eye test, called the VCS Test that is helpful for some people to get an idea if you have had any biotoxin exposure. It isn’t perfect, since it’s an eye exam on your computer and everyone has different screens, but it is a cheap start.

We also highly suggest testing your home, and exploring our environmental home testing catalog. We also offer professional interpretation of these tests here at Pj Harlow Wellness.

Personal Relationships & Mold

An important thing to note when dealing with mold is that it’s going to be real hard to get people to understand what you are experiencing.

In our story, we found that most people were quick to label us, even when we tried to explain.

It’s been our experience that community, empowerment and empathy are words that are just thrown around for buzz-worthiness and ego in many ways. I don’t say that to come off as being bitter, (even though I used to be). I say it because it’s the truth, and I don’t feel it’s beneficial for anyone to sugarcoat mold.

It’s my hope that someday, people will really embrace things that they do not understand, but for now, try not to waste too much energy (that you could otherwise use for healing) to try to convince people who refuse to be convinced.

There are numerous obstacles involved when dealing with toxic mold.

Many that the general population has no moral compass of measurement to judge.

Things like:

  • Not feeling safe in your own home due to something that you can’t see. (common)

  • Having to deal with a spouse, partner, relative &/or friend(s) that doesn’t believe in your illness, causing trust & respect to be lost in your relationship. (common)

  • Having to navigate a complex chronic illness & a toxic environment often alone. (common)

  • Finding a family doctor that understands & believes your illness. (rare)

  • Finding a health professional or practitioner that can help you heal. (possible)

  • Finding a mold inspector, remediation company or mold consultant/coach that understands Mold toxicity & CIRS who is educated with practices & methods for sensitive individuals. (very rare)

  • Holding down a job when you don’t feel well enough to be there physically. (common)

  • Having to work in an environment that is toxic for you, (where no one may take you serious), but you cannot leave because you need the income. (common)

  • A fear of getting a house again, because what if it has mold? (very common)

  • Understanding how to actually find a house that is biologically safe. (extremely rare)

  • A frequent feeling of discomfort in your own home prompting you to scan your environment for threats. (very common)

  • A constant fear of mold. (very common)

  • A fear of going places because there may be mold there. (common)

  • Constantly worrying about mold exposure in your home & having to repeat this process over again. (common)

  • Learning how to proactively care for, inspect, clean & sustain a healthy-home. (very obtainable)

  • The extreme collective financial burden of: replacing toxic possessions, home inspections, remediation, lack of insurance for healthcare, supplements & medications, therapies, detoxification, tools, and finally the stress of having to purchase specialty organic & low tox products, etc. (very common)

  • Dealing with the lack of education, understanding & denial surrounding the topic of environmental toxins. (very common)

  • Being forced to create intentional, strict boundaries due to the lack of understanding, which further results in more isolation. (common)

  • Feeling that you have lost your integrity among the constant doubt from your peers and families. (common)

  • Being in a position where you must choose to live in mold, move into mold, or continue to expose your family to toxins because you have no choice. (incredibly heartbreaking)

  • Being criticized for getting rid of possessions that appear to be totally normal. (common)

The losses of mold

There is so much more to our story. I actually, haven’t even written many of the extreme parts yet. We struggled for a long time to get our lives back since all of this went down.

Keep in mind we didn’t have all the resources available now during the since mold got kind of trendy.

Our healing journey is still an ongoing process, and yes, we are better, we are functional, and to varying degrees we are thriving, but do we always stay at those levels?

No.

Healing isn’t a linear process, it goes up and down, and often plateaus.

I can easily relapse into nervous system dysregulation when I am stressed out. So it’s an ongoing committment to nourishing the body, practicing the healing arts, respecting and securing foundations, mitigating home risk, and frankly, so much more than taking some binders and supplements for 6 months.

livinginmoldcankeepyousick

After being deathly sick for a couple years, I learned quickly that I could not heal properly while living in mold.

After being forced to flee our moldy home, we had no choice but to move into another home which also had mold, just not as bad. As much as we would want to say how unlucky we were, we are extremely grateful that we were provided shelter after our extreme loss, regardless of the circumstances.

The entire experience was dark.

Our losses were insurmountable.

As much as I tried to stay positive, at the time, mold really ruined our life as we knew it. It was so toxic and invasive in our home, we just decided (from the little knowledge that we had then) to leave everything and walk away.

Now that we look back in hindsight, there were some things that we could have salvaged due to what we’ve learned about decontaminating possessions.

It’s been a constant state of learning.

We kept going day in and day out, with hopes of getting another home, and we finally did.

It took a lot of searching to find a house suitable for us, and we continue to upgrade our home to make it healthier and safer, which also takes time and money.

This isn’t something you can recover from in 3 months.

It can take years to heal, at least for us it has.

The Positives

The are some positives to this, especially the level of self awareness that we now have.

We have a healthy respect for mold.

The sacrifices we endured have in some ways made me feel like this was meant to happen to us. It made me see things I had not before, in more ways than I can ever explain here.

Your value system shifts from materialism to what’s actually important, relationships/family. You’re grateful for what you have, and stop worrying about the things you want.

From our own experience, not placing so much value on “stuff” has given us an unexplainable, new sense of freedom.

I have had to accept things as they are, understanding exactly what I have the power to change and what I don’t, all without letting this tragedy and sickness completely define who I am.

I often wonder why this happened to us.

We are so occupied, and through that - distracted, and in this process we lose focus on the more important things in life. This experience, while extremely painful, has forced me into growing immensely.

  • Not being such a stranger to our own home is something we practice.

  • Using our education and knowledge to maintain a healthy home has helped us to proactively protect ourselves.

We have gone from feeling powerless, to feeling empowered, from victim to victor.

So if you’re reading this and you feel sick, you are not alone.

Don’t lose hope.

It is my hope that somehow, in our story, that we have connected with you. We would love it if you will share our story, so more people can understand.

Now that you know, I am positive you have someone in your life that is affected, and you could be the one to save them from a lifetime of unanswered questions and suffering.

We have to be the news now, and I encourage taking your power back. Trust your instincts, listen to your gut, and as Pete always says…

“If nothing changes, nothing changes.”
— Unknown

work with us

Mold Toxicity/Illness is the type of thing that you have to experience to ‘know’.

The knowledge & experience we have is rare, seasoned, and extremely valuable. We are the resources & support that wasn't there when we experienced the stigma of mold.

We wished there was someone who could have guided us through this process so we could have avoided much of the loss and pain.

Mold Toxicity-3.png

Did our story resonate with you?

We love hearing from readers, and even more, we want to help you!

Learn how to find the root cause of your health issues.

We virtually coach, teach and consult around the globe, and have sessions & packages to fit just about everyone’s circumstances.

Join our growing community of healthy-home & environmental health advocates!

Learn the pro decontamination protocols & techniques

let’s get social!

mold symptoms

The Master List (links included)

  • Acne (even on healthy diet)

References (If not already linked directly above)

OSHA (1970). OSH Act of 1970 Section 5(a)(1). U. D. o. Labor. Washington DC. Park, J. H. and J. M. Cox-Ganser (2011). "Mold exposure and respiratory health in damp indoor environments." Front Biosci (Elite Ed)3: 757-771

Medically sound investigation and remediation of water-damaged buildings in cases of chronic inflammatory response syndrome. Keith Berndtson, Scott W. McMahon, Mary Ackerley, Sonia Rapaport, Sandeep Gupta, Ritchie C. Shoemaker Center for Research on Biotoxin Associated Illness, Pocomoke, MD Corresponding author: K Berndtson: keith@parkridgemd.com

 
 
Health, Most Popular, Home, Editor's PicksPJ HarlowMold toxicity, environmental illness, symptoms, fatigue, chronic pain, gaslighting, feminism, stigma, fibromyalgia, chronic fatigue, can mold make you sick, can black mold make you sick, how can mold affect your health, mold illness symptoms, signs of mold sickness, can mold kill you, can black mold make you tired?, can mold make you tired?, Does black mold cause chronic pain?, Does mold cause back pain, Can mold make my hands hurt?, Finger & hand pain13 Comments