What Mold Toxicity feels like, from symptoms to shame.
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. Stigmatized in shame we have battled this war primarily alone, leading us to a laundry list of other illnesses, what was all of this? Lyme Disease & co-infections, heavy metal toxicity, parasites, Epstein Barr, Candida, Mast cell activation syndrome, PANS, and even Glyphosate poisoning! The list kept going.
This was a world completely unknown to me and my husband. Maybe it is to you right now. For the sufferer, it can be overwhelming, isolating, painful and also relieving believe it or not. When I finally found out that I had names to match all the symptoms I had spent years of my life struggling with, I felt a sense of justification within all the confusion.
A huge justification. I wanted to scream to everyone, “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, doctors don’t know why, it’s a journey of it’s 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. Additionally, 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! I wish more people and health professionals in mainstream medicine were supportive, but they just aren’t educated. It’s still largely taboo to be sick from mold. “Quack Science”, I heard that one enough times to make me wish I had a device to let people feel how I did, they surely wouldn’t be saying that then.
In reality, our world is not the same place it was even ten years ago. It’s far from the place of my memories, growing up in the 80’s and 90’s. Our planet is now sick and toxic, and mold toxicity - it’s absolutely real, very real.
According to geneticist and mold researcher Dr. Andrew Heyman, “Forty million people and half the homes in the U.S. have a mold problem.”
Forty. Million. People. I have to say, that statistic means that there is a great chance you know someone who is affected by this.
Just as relative, in an analysis of previously collected data on a nationwide sampling of office buildings, Mendell and Cozen found 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). Another analysis of office building data indicated that 30-50% of built office environments in the U.S. have suffered from water damage (Mendell 2005) and a separate analysis office building data found that 34% had current water damage in occupied spaces, 71% had past water damage in occupied spaces, and overall, 85% of the buildings had past water damage and 43% had current water damage (Cox-Ganser, Park 2011)
Can you can imagine what those numbers are now? As they are it’s staggering to think about, but realistically, people already know there’s mold in their homes, schools, work places, offices and buildings. The harmful thinking that has been perpetuated throughout our society is that: mold is harmless, and only causes respiratory symptoms in some people, which is just absolutely, utterly false.
I personally have spoken to many teachers, social workers, nurses, lawyers, and students who have shared with me that their workplaces have a mold problem. Not to forget a huge amount of military families who have shared their serious problems with water damage in their homes on base.
And guess who is affected more? Women. I personally believe it’s something to do with hormones, I am not a doctor, but my credentials in research validate me enough to make a statement. Men do and can absolutely get sick but women seem to be affected in higher levels. Maybe its that we actually are reporting it more, or admit to ourselves that we have issues? I don’t have stats on this, but visibly, women are reporting sicker than men.
There is enough medical documentation linked on this page alone to demonstrate and authenticate everything in its entirety that I am saying. Proven in pages and pages of legitimate studies. The irony comes in here, and it simply comes down to a fact, that can’t be made any clearer: Mold toxicity is an illness that isn’t profitable, and we can’t have our people being well now can we? Insert sarcasm here.
Regardless of the facts we produced, our lengthy explanations, our research, little to no one took us serious, and it’s shameful.
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 young girl, I had symptoms. Ones that I was not even able to communicate properly or describe, ones that no one took seriously, in fact I can’t tell you how many jokes that people made saying I was a hypochondriac. While all these things made my life’s journey into adulthood and after extremely difficult, I adapted as best as I could. Much of what I believed to be “what normal people feel like”, was not. 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, addiction, joint pains, difficulty with learning, poor memory, restless leg syndrome and even seizures. I could go on and on. In my twenties, I adapted a very healthy lifestyle, which would carry my toxic-load in a holding pattern, unknowingly.
My first symptoms were in my hands. They started aching, almost pulsing throughout the day at work. It would come and go. I had similar pain a few times years before, but it was always a random thing, never so 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. It wasn’t just one hand, but both, my right more predominantly but I still didn’t think too seriously about it.
Pretty rapidly, the pain navigated up into my wrists and elbows. Honestly, I thought I had carpal tunnel. Years of typing was bound to have caused me to get the techno-ergonomically incorrect syndrome, right? That was my first excuse. Then when my back, feet and knees began to hurt, I thought to myself, “you’re just getting old”. For the record, I am not that old. I was even embarrassed at first to say anything to my husband. At the time, I had recently hit my 40’s, which for me, was clearly not a celebration. The thought of aging physically already, really made me feel self conscious and took a deep stab at my already weary esteem.
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 appointment wait longer than normal since I was a new patient. It was about 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.
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”. 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 psychosomatic, 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 silently sat there, tears streaming uncontrollably, 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 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 doctors office without assertively letting them know they were wrong for treating people this way, for treating me this way.
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, the light was so bright I couldn’t be without sunglasses. I was at a point of change right then, where I had to make a choice.
Listen to this guy who spent a whopping total of 22 minutes with me throughout 3 appointments, who couldn’t tell you a damn thing about me, my background or my life. OR
Listen to myself, to my own body, to the one who’s been self sufficient for over 2 decades, who is intelligent, organized, reliable and knows, without a doubt that something isn’t right.
I think you know who I listened to.
“Listen to your body”
While I know there are some really fantastic doctors and professionals out there, everyone I met with up until much later was wrong. Over 20 of them. The majority made very poor, ego-driven judgments with my case, one even told me I was “attention-seeking”. Then another insinuated I wanted narcotic pain medication. I didn’t want to mask the pain, I wanted to cure it!
The gaslighting that often happens to women when doctors can’t find what’s wrong is too common. I have spoken to numerous ladies who are 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”.
What? Why are we all lumped together and presumed as natural born hypochondriacs? Why are we viewed as weak? WHY is it that women are perceived as so 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 a daunting task 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, that I am now 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
NOTE: I am in no way excluding the men out there who are sick, I know many are disbelieved as well when it comes to environmental illness, as they doubted my husband had CIRS & Lyme, condescendingly smirked when he told them Lyme was transmitted sexually and congenitally, and were shell-shocked when his testing came back CDC positive. There’s just a definitive disgrace associated with being a sick woman.
About 7 months into being sick I finally got diagnosed with Fibromyalgia by a rheumatologist I was then seeing. I was still really perplexed just how I got it though. The definition of Fibromyalgia is “grouping of symptoms”. No real cause, it just “happens”. Again, mainly with women, but men can get it too. Just like mold toxicity, it carry’s a stigmatic association that anyone who has the 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 “lesser than” type of vibe when I announced my illness. It was as if people were dulling down my pain, “Oh it’s Fibromyalgia, that’s no big deal, my sisters cousins aunt has that and she’s started exercising and now shes fine. At least it’s not Cancer.” All with complimentary eye dodges to avoid looking at me directly and physical gestures to let me know they don’t get it, not at all.
I felt so alone and was deeply grateful for my husband. He was my rock, and got even more upset at people’s hollow acknowledgments. I was deep into research, going down the rabbit holes of my already existing PTSD. Years before, I had been in a traumatically violent relationship. I spent the majority of my life after that in fight or flight mode, so I was convinced it had something to do with my body suddenly betraying me. I was very aware of psychological manifestations but this was not that. Even more perplexing to me was the question of why now? I had been in therapy already. I spent 2 years getting through that. 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. We had been planning to extend our family, I even got my first flu shot a few weeks prior to keep myself from getting sick. That in itself was a disaster that in retrospect I still am on the fence about. I reacted horribly and spent 3 weeks with a huge steel-like plate of a lump under my outer bicep, unable to move it, with a 104 fever to match. I never put it together and still continued thinking trauma was my root cause. I wasn’t entirely wrong and would learn later that everything plays a part.
A million excuses & my family gets sick.
By late spring I was content with my Fibromyalgia diagnosis and began to blog on Instagram. I felt so isolated, I’d hoped to find relativity and maybe 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 got symptomatic. I remember we were contemplating buying a really expensive new bed because we both kept waking up stiff and sore, thinking our old bed was the problem. 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, and it wouldn’t be something we would puzzle together until after it was almost too late.
In March Peter’s appendix ruptured, and he was in the hospital for 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. He was really tired, irritated, and frustrated a lot. He thought it was all stemming from work. 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 and why am I so sore and tired?” It really was out of character for him. Both of us couldn’t remember a thing so there were lists posted everywhere, as we joked that we were so old that we had lost our memories. It got to a point with his pain that we were wondering if he had Fibromyalgia too?
Then there was the the kids, wow. We fell for “it’s normal” for a 11 year old boy to have migraines everyday, nosebleeds three times a week, stomach aches all the time and to suddenly gain 20lbs in a month. My then 13 year old daughter suddenly had immediate onset “asthma” (air hunger), OCD, fatigue, agitation and headaches. Our pediatrician would blow off all of my concerns, and go into diet when we were already an organic, gluten free, vegetarian family. I knew in my soul that wasn’t it, additionally, I had been weight training and counting macros well before any of this. I still didn’t question him. He had the degree on the wall and the MD behind his signature. I even asked him directly about mold once, in curiosity. He explicitly told me while talking down to me that it was “harmless” and only caused allergy symptoms for some sensitive people. His arrogance was hidden in sarcasm as he scoffed my countering concerns and reiterated that no way was mold a cause of my sons migraines, GI issues or bloody noses.
My Mommy spidey-senses were off the charts, and the only person who really understood, was my husband, to which I am eternally grateful. I don’t honestly know what I would have done without him. Many women that I have interviewed have shared with me that their doctors & pediatricians treat them with condescension. Their husbands think they are nuts, or don’t take them serious. In many cases it causes divorce, the women flee, usually with the children if applicable and the man (who usually isn’t noticeably symptomatic) stays with the sinking ship. It can get even more complexly stressful when the child or children are toxically sick, and their fathers don’t agree with treatment.
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. It so happened that day that Peter used a little more force than usual, since he was still reeling about his shi**y 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.
I heard a “pop” sound and all of a sudden the electric blew out. Something had tripped the breaker. I turned to the kitchen and heard what sounded like rushing water. Then I heard F**k! coming from the bathroom. After figuring out what happened, Peter came around the corner and pulled our oven back while I wiped up the water that had leaked out of the wall onto our floor. We were inspecting the damage when we both turned to each other perplexed. The wall was totally saturated. Like too saturated for the shower 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 I saw it. Black spots on the sides and bottoms of the cabinets. We hurried and got the flashlight and there it was behind the other cabinets, deeply penetrating the 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 my sons room, and into our HVAC system. To top it off our dryer hose was detached under the house, creating the perfect recipe for black mold - constant water and humidity. It was everywhere, inside the walls of our house, we just couldn’t see it or smell it. And, just like that, we knew it was mold that was making us sick.
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. It’s not uncommon, in fact it really should be one of the first things doctors look at, environment. I find it oddly strange that no one looks at that in western medicine. No one spent any time asking if I had been exposed to chemicals, a moldy house or anything close.
We are taking in toxins through our air, our water, our soil, our food, our products, our homes, and buildings. I can’t express it enough, this isn’t the same place it was twenty years ago. I didn’t have to worry about so much in the late 90”s and even 2000’s, but here we are.
According to geneticist and mold researcher Dr. Andrew Heyman, “Forty million people and half the homes in the U.S. have a mold problem.”
Yes, you read that correct. Forty. Million. People. I know I wrote it once already, but I had to say it twice because it’s staggering! A huge 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 due to our environment.
And guess what? Practically no one even knows!
I can also lay down a narrative to why some people get sick and others don’t. Like 24% of the population, I carry a specific genotype that makes me (and my husband & kids ) genetically susceptible to reacting, or getting sick. We took a specific test called the HLA (human leukocyte antigen) DR gene test. We all ironically came back positive and multi-susceptible. Meaning our bodies cannot recognize mycotoxins, biotoxins or toxins in general, nor can we produce the antibodies to detect or detox them. So the mold I may have been exposed to when I was 7 years old is still circulating inside my body!
This is the reason why some people can be exposed to mold in the same conditions, same time frame, the same everything and they are totally fine. It’s not to say that eventually toxic mold won’t make them sick, but the point being, it impacts everyone differently. People like us though, it can take them out. Hard.
It’s best to think of your body as a bucket. It’s the easiest way for me to explain. You can spend your life from birth until now, being a product of your environment. Little by little, you begin to fill it up. Toxin here, toxin there. Your body collects the toxins, storing them in your fat cells. And if you have the HLA-DR gene, you absolutely can’t get rid of this stuff on your own. Regardless, we ALL are in a constant range from 1-10 of being affected by the environment. No one is a zero. We are also currently in a super toxic time for our world, so collecting is more rapid. When your bucket gets full of toxins, spilling over, whether it be from a current moldy house or an old exposure, add in glyphosate (pesticides), heavy metals like aluminum, mercury (fish, amalgams, thimerosal), 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. Now just because, lets add in that stress from life/work and how hard it is these days, or previous trauma that may have been in your past. Those types of things, you carry with you like a weight attached to your back, and they ALL contribute to the total load of filling this hypothetical bucket = which is an analogical representation of your body.
What happens? Systemic inflammation. Adrenal insufficiency. Cortisol issues. Drainage issues. Immune system suppression. You become chemically sensitive, your central nervous system isn’t firing right. You get leaky gut. Epigenetics cause genes to express (turn on) stimulating autoimmune illnesses. Viruses you never had but got exposed to get reactivated. You get fatigue, chronic pain, cognitive issues and you become ill.
Like I said earlier, mold, the enigma that it is, can very much be a trigger and an illness all on it’s own.
Naturally like me, I am sure when you originally thought of mold and any related symptoms, it was something to do with respiratory issues or some kind of allergy. I seriously had no idea what mold was capable of. Mycotoxins (the toxins certain molds produce) can cause an array of different symptoms that affect your brain, muscles, nervous system, hormones, gut and major organs.
The following EXTENSIVE listing is one that I have collected and spent an enormous amount of time on, but I wanted to have a master list of all master lists for you and for me. It has been a collective from many different sources, including my personal research & others in the field. For ease, the list is in alphabetical order and includes links to scholarly articles, videos and literature that would be valued with regards to what symptom/issue is noted. All to help spread awareness, to provide resources and more so to help educate the masses in the many ways mold can manifest itself.
This list does not mean that those who suffer from mold toxicity will have all of the symptoms, nor will they develop the autoimmune diseases or other illnesses associated here. As I have written above, we are now in the most toxic age of our planet, and so many things come back to mold. I have tried to link as much documentation as I can find, and will continue to add more as it comes available. I encourage everyone to explore below.
One last thing, if you’re curious and may feel like you have been exposed, most people have clusters of symptoms, with at the very least about 4-5 symptoms. If your really sick, you may additionally have some kind of underlying illness and mold was the trigger. I will include a link to a testing site that measures the inflammation of your optic nerve. It’s commonly used in the beginning stages of biotoxin exposure. The test is a $10 donation for 3 tests and you get printable results. (I have no affiliation btw)
I will also include this link to our blueprint for mold toxicity page for beginners who need additional information on what to do. I get emails daily asking questions and I worked hard to build a site full of information to help all of you. It’s listed at the top of our website, called “Mold Toxicity”. We didn’t have much help at all, so I really wouldn’t want another living soul to experience the pain and sheer isolation we did.
So how did it end? My Epilogue.
Congratulations for getting to the end! I know it’s a long read, I wish I could make you feel warm and fuzzy and tell you that I am happily fully healed, and that our story was over. I actually, haven’t even written the extreme parts yet. We’ve been struggling to get our lives back since this all went down 3 years ago, it’s still going on. Healing for us is now a lifestyle. After we found the mold in October 2017, Stachybotrys (black mold) to be exact, we obviously figured out it was the culprit, along with a bunch of other things.
I can’t lie, or exaggerate (I never do, despite what people think of me), it’s been tough. Our losses have been insurmountable. As much as I try to stay positive, the mold really ruined our life as we knew it. It was so toxic and invasive in our home, we had to forego everything we owned and walk away. (Code for - a bunch of trips to the dump). Yes, I mean everything. Furniture, clothes, appliances, electronics, bedding, toys, art, books, decorations, memorabilia, irreplaceable things, all gone. We each kept a couple outfits and one pair of shoes. We washed the few clothes we kept in borax and ammonia but have since learned that doesn’t work either, so it’s a constant state of learning.
what’s a mycotoxin?
Mycotoxin: (from the Greek μύκης mykes, "fungus" and τοξικόν toxikon, "poison") is a toxic secondary metabolite produced by organisms of the fungus kingdom and is capable of causing disease and death in both humans and other animals.
If you don’t know what mycotoxins do, they are microscopic poisons that get embedded into your personal property, especially porous items and even in places where there is no actual visible mold. They are pretty impossible to eradicate, unless you have a giant ozone machine on hand and the problem isn’t so severe, you may have a chance. In our case, I was so sick by that time, as was Peter and the kids, that we decided it was too risky to cross-contaminate the next house we were to live in. Nor did we even have any other options or help.
It was after reading other stories of families who did keep their things and they stayed sick, contaminating every next house they lived in that solidified our decision to play it safe. We kept a few things from our shed and porch which weren’t attached to the HVAC, but how much can you do with a lawnmower when you’re homeless?
my closing thoughts:
The isolation hasn’t really gone away either. We had a handful of people that stepped up at the very beginning, and we are forever grateful for their sympathy but at times, we still feel the deep judgement and doubt as our situation was implied as being, “not that bad’. The people we once broke bread with are now ghosts to us and probably, us to them. When something controversial like this happens to you, it’s a real testament to “who is who” in your support network. Unfortunately, for us and many others alike, people these days can’t seem to get out of their own perspective and see someone else’s actual pain. It’s easier to believe a person is faking being sick or embellishing the truth rather than thinking outside of the collective hive and doing some old fashioned, pound the pavement research. People really attach themselves to the act of being right more so than caring about being factually right. It’s been our experience that community and empathy are words that are just thrown around for buzz-worthiness and ego.
We keep going day in and day out, with hopes of getting another home soon. Along with the stigma comes a slew of other problems that the average citizen has no moral compass of measurement to judge. Things like:
Trying to find a family doctor that understands your controversial illness.
Holding down a job when you don’t feel well enough to be there physically, and obtaining a remote job so you can support your family.
A fear of getting an actual house because what happens financially when you become incapacitated again.
Constantly worrying about mold exposure and the decontamination process when one of us gets exposed.
The costly burden of having to replace everything you ever owned, save for a new house, pay for treatment that’s not covered by insurance, pay for supplements & medications that aren’t covered, and lastly having to buy everything chemically-free, GMO-free, pesticide-free and organic.
Dealing with the lack of education and understanding regarding environmental toxins causing isolation, and constant doubt amongst your peers and families.
Sharing a small house for the four of us (many gracious thanks to my mother in law) with absolutely zero privacy for the past 18 months.
If anything positive has come out of this, its the fact that it’s brought our family unit closer than ever. Sure, we irritate each other sometimes, as does everyone, but its usually just because we get on each other’s nerves and each have our own quirks and nuances. And for relevance, try imagining sharing a one room apartment with two teenagers? Yea, I thought so.
Personally, I have found my passion. In my journey here, I have had to figure out the science and physiology of my own illness. I had to fight for my children’s health and well being. I’ve had to face the discrimination from every aspect of life’s connections to the outside world, whether it be a job, a doctor visit, legal matters, personal, school issues - someone is always showing signs of skepticism, making it harder for us to make a new life. 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 completely define who I am. I have had to make space for myself where there wasn’t any, and in that, do it with dedication and intensity.
I often wonder why this happened to us. I think that it did to show us whats happening to our world. We are so occupied with distractions we are missing the serious issues of environmental toxins that are affecting us all. This experience while being so painful has forced me into an immense growth. It’s opened me up to our true reality and to a group of people online, that I genuinely want to fight for. A lot of them have unknowingly restored my faith in humanity, and have inspired me to do exactly what I am doing right now. So if you’re reading this and you feel a little sick, you are not alone. Don’t lose hope. Having always been a sensitive person, I believe that we were affected first, to be the ones who loudly stand up and act. I am stating now, what will quickly become a massive problem, that happens to already exist. While this is still a rare occurrence to many, it will not be in the future, I assure you.
It is my hope that somehow, somewhere in my story, I have resonated with you, the reader. Hopefully, you take something away from this and hopefully, it helps. We would love it if you will share our story, so more people can understand. Now that you know, tell your friends, your family and loved ones. 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 suffering.
We have to be “the news” now, and I encourage taking your power back. Trust your instincts, listen to your gut, and as my husband always says…
If you would like to learn more about mold toxicity and what to do, click the link below. We have a tremendous amount of specific directions, information and resources on our website here. We additionally offer support and tools to help you in this journey.
The Master List
Acne (even on healthy diet)
Addiction to anything to self medicate
Allergies (new onset)
Allergic reactions to foods
Anxiety/Anxiety Attacks/Panic Attacks/GAD
Anger, unexplained (mold rage)
Blotchy Mottled Skin - (symptom of pots too)
Body temperature regulation problems
Breath (shortness of)
Bumps on skin (mystery to doctors)
Calculation difficulties (Math, Numbers, lists, putting things in order)
Cancer - Gallbladder
Cancer - Liver
Cognitive problems—difficulty assimilating new information; difficulty finding words; difficulty focusing; difficulty thinking or accomplishing other executive functions such as organizing and planning; difficulty with math or handling numbers; difficulty with short-term memory; short-term memory loss
Cold hands or feet
Cold fingers/Hot fingers (some are cold and some are hot simultaneously)
Coughing, shortness of breath
Cramping (abdominal, bowels)
Crying, no reason, or excessive
Dark Circles under Eyes
Darkening of skin
Decision making -Can’t make decisions
Decreased sex drive
Delayed healing for viruses, colds, wounds etc.
Delayed recovery from normal activity
Drunk feeling (without any cause)
Dysbiosis (Imbalance bacteria good to bad)
Ear Pressure (Inner Ear, Otitus Media, Ear Infection, Fluid behind ear drum)
http://www.ncbi.nlm.nih.gov/pubmed/19441244 (Diagnosis and Treatment of mycological otitis media)
http://www.ncbi.nlm.nih.gov/pubmed/20646352 (Possible Treatment using Propolis and Zinc)
Electric Shocks in limbs
Elevated Liver Enzymes
EMF - Electro-Magnetic Frequency Sensitivities- Cell phones burn hands after prolonged use, hands feel hot, electronics & WiFi cause headaches
Eye floaters, twitching, dark circles, irritated, burning, itchy, red, or watery eyes
Facial Flushing (red)
Fatty Liver Diagnosis (without drinking alcohol)
Fight or Flight feeling (losing control/feeling like you are going to die)
Food Sensitivities: (New onset of food sensitivities especially grains, carbs, breads, sugar, histamine foods, lectins, soy, corn, gluten and preservatives)
Frustration for no reason
Fungal Infections of the Scalp
Glute Pain (Butt muscles)
Gout (Uric Acid problems)
Green stool (secondary symptom of gallbladder dysfunction and bile from mold exposure)
Guillain Barré syndrome
Hair Loss, eyebrows
Headaches: Cluster, Migraines, Hemeplegic
Heightened sensitivity to foods, chemicals
High Blood Pressure
Hormone Imbalances - (Over/Underproduction of Estrogen, Progesterone, Testosterone, Cortisol, etc.)
Hypo-perfusion (decreased blood flow through an organ)
Immune System dysfunction/Immunosuppression -
Intolerance of bright lights
Irritable Bowel Syndrome
Joint aches and pain, abdominal, arm, back, chest, chronic, cycles, feet, growing, hip, joints, leg, lungs, mistaking cold and hot, sinus, stabbing, vulva
Jolts: Feeling of an electrical pulses running through your brain, limbs, arms, legs
Liver not processing toxins, Stone formation, Slowing down of Bile production
Fatty Liver Diagnosis (without drinking alcohol...this is directly related to the mycotoxin exposure)
Metallic taste in mouth
Mood swings, changes
MRI - White Matter on Spect Scan
MS (Multiple Sclerosis)
Direct connection between the cause of MS and Fungal Mycotoxins
Muscle cramps, jerks, or twitches
Nails won’t grow
Narcolepsy Symtpoms (falling asleep quickly)
Nasal Passages (burning)
Night terrors, Nightmares-extreme fear, waking up screaming
Nervousness and Jittery feeling constantly)
Noise sensitivity - get startled easily by noises
Numbness and tingling (especially in hands and fingers)
Numbness in the arms, legs, feet, or hands
Overwhelm - extreme feeling of overwhelm for everyday living
Pain—stabbing, revolving, pulsing, throbbing, moving, long term, short term, temporary, burning, phantom pain, nerve pain, muscle, bone, arthritic, deep, abdominal, arm, back, chest, chronic, cycles, feet, glutes, growing, hip, joints, leg, lungs, mistaking cold and hot, sinus, stabbing, vulvar
Phlem - Spitting up colored phlem: green, yellow, red, pink, brown or white
POTS (Postural Tachycardia Syndrome: Rapid heart rate when doing normal activities ie: sitting, standing or laying down (absent of a known heart condition)
Rage (Mold Rage) Suddenly getting extremely upset about mundane things
Red Face (flushed)
Reduced Color Distinction
Sensitivity to bright light
SIBO (Small Intestinal Bacterial Overgrowth)
Sinusitis (Chronic Infections, Inflammation, Pressure, Drainage, pain, burning that keep reoccurring or wont go away with any kind of treatment protocol)
Skin crawling (Especially in the scalp or forehead)
Skin sensitivity, Skin changes, prickly skin
Sleep Paralysis, suffocation dreams, hallucinating
Sleep problems - waking up during sleep for no other known medical reason, can’t sleep, can’t wake up
Smell Sensitivity to perfume, gas, diesel, foods
Speech: Stuttering, Saying the wrong words, Difficulty forming words. Repeating the same things
Speech: Talking in excess about everything that is on your mind (Others notice you are talking way too much)
Stiffness - especially when waking
Throat - Burning, Sore in morning, scratchy
Tingling in the head/scalp: Feeling an electrical type sensation move over your hair and scalp
Tongue, throat pain, burning
Twitching in Fingers: When hands are still fingers move and twitch on their ownTwitching
Twitching legs: Legs move or twitch on their own laying down or when standing
Vaginal Yeast Infections
Vertigo: Sensation that the room is tilted and moving around you
Vertigo brought on by concentration
Vision: Lights are bright, sensitivity, Fluorescent lights are bothersome. Seeing halos around everything (White borders)
Vision: Feels like everything is flashing
Wheezing in lungs
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: firstname.lastname@example.org