And The Diagnosis Is...
I am a moldie. Before I explain exactly what that is, let me give you some background…
I haven’t felt well for years. I’ve been to every doctor in every specialty over roughly a decade and never gotten any solid answers. You name it, I’ve tried it. Neurologist, rheumatologist, urologist, gynecologist, reproductive endocrinologist, allergist, nutritionist, physical and occupational therapy, acupuncture, chiropractor, MRI, CAT scan, colonoscopy and endoscopy, EVERYTHING…
My symptoms were always in waves and I truly didn’t put much of them together. At this point my symptoms literally involve my entire body. Respiratory: runny nose, heavy lungs, sneezing, coughing; neurological: headaches, memory loss, brain fog, depression, anxiety, wide spread body pain, poor balance, insomnia, unrestful sleep; stomach: loss of appetite, stomach pain, nausea, heartburn/reflux, constipation and diarrhea, bloating, gas, food intolerance, extreme sugar cravings; urinary: bladder frequency and urgency, painful bladder; reproductive: endometriosis, infertility, inability to ovulate, irregular and painful cycles. Truthfully, I know I am forgetting some...
I thought what I was being told was true, that I had muscular dystrophy (which I’ve known for years), migraines and cluster tension headaches, fibromyalgia, seasonal allergies, degenerative disc, infertility, endometriosis, IBS, interstitial cystitis, the list goes on… I had become a walking dictionary of diagnoses. To make matters worse, nothing I was ever prescribed helped. No medical intervention, procedure, or imaging ever solidified anything (except the dystrophy and degenerative disc).
We moved into our new house in May of 2020 and I had our third child, Elouise, in June. I started having more and more flares of symptoms and could not for the life of me understand what the hell was wrong! As my symptoms continued, I started having bad bouts of long lasting sadness and my anxiety kicked up significantly. I was miserable and continuing to frantically, desperately search for an answer.
February 2021 rolled around and we got a new TV to set up in the basement to have a movie area next to the gas fireplace and in the darkness. The kids loved the new space and being that they had switched from naps to “quiet time” in the fall, the movie area was perfect. They preferred the basement, by the fire, in the dark, to watch their daily movie; so that’s what we did! I brought down laundry to fold and we snuggled when I was done until the movie was over and Elouise woke from her nap. At that time, I started to suffer with crippling exhaustion, brain fog and memory loss, and a complete lack of drive to do anything; characteristics completely unlike me.
In May, my mom came to help me set up for a garage sale and at the time I was suffering from what I thought was a cold. It got much worse during her stay and I did an e-visit with a doctor and had an antibiotic called in for a sinus infection. The next day, my brother and his fiancée came over and all of us went to the basement to watch a movie with the kids. In that time, I went from nasty cold symptoms to looking like complete death. My mom, brother and almost sister-in-law were completely blown away at how quickly I dropped off an invisible cliff and my mom rushed me to urgent care. I had every swab and blood panel run and everything came back normal. Covid, influenza, mono, RSV, standard blood panels. Zero indication of what was wrong.
My flare ups happened rather frequently after that and lasted between days and a week or more. I finally decided I was going to reach out to my nutritionist who I hadn’t seen in a few years. We met and discussed what was going on and she was convinced that I had SIBO (small intestinal bacterial overgrowth) and helped me order a test to validate that. In the meantime, I had another flare up, one that made my eyelids convulse and my nose drain uncontrollably. I messaged her and told her what was happening. She then told me that she was almost positive I had mold toxicity and gave me a link to order the test. I did it and boom, we got a glaringly obvious answer; I have mycotoxin poisoning. I also did the SIBO test which was positive as well.
My nutritionist told me that mycotoxins get into the body through the lungs, skin lesions, and being ingested and that most cases are environmental (either living or working in a moldy environment). I started completely avoiding the basement as that was where I noticed I felt the worst. While my flares became less frequent, I was still feeling terrible every day. I went from some good days and some bad days to all bad days and some unbearable. Every day I am foggy, exhausted, have no energy or drive, deal with stomach pains and headaches, go days with little to no appetite, and again, this list goes on and on. Most recently I suffer from terrible insomnia and light, unrestful sleep. We knew we had to reach out to the environmental mold specialist my nutritionist had referred to have our house assessed.
We went to Mexico on vacation and I was almost symptom free the entire week. Our flight landed late on Friday night and we got home in the very early morning on Saturday. When I woke up Saturday, my symptoms started creeping up on me and by Sunday afternoon, I was on the couch shaking uncontrollably and my body was throbbing in pain. The mold testers were coming that Tuesday to assess our house; we decided we needed to leave our house as soon as possible. By Sunday night, Bryan’s stomach was shooting pain and he had no appetite. This was the first time he had shown any kind of reaction to the house.
The house was tested for an entire day and we got the call on Thursday. Our house that we have lived in for exactly 15 months has quite a few mold issues, a couple of them pretty severe, and the molds are toxic. They are also the mycotoxins that are in my body. We relocated the kids on Monday, August 23rd and I worked to move our family to our temporary home the following weekend with help from my mom and Bryan. We still make trips back to our home to get things we forgot or suddenly need. Today I Was there doing the seasonal and size swap for the kids clothing which took about three hours. I felt symptomatic within half of that time and my symptoms worsened before leaving. Today marked the last trip I will make except to swap out my wardrobe when the weather changes. I can’t be in the house more than 30 minutes or I set off my system again; I prefer none of us are in there for any more than that amount of time.
Living through what has surfaced in the last several months has been gut wrenching and I still find myself baffled by it, many times, struggling with realizing this is our reality. When I go to our home, my stomach and heart fall through the floor. Our home that we love so much is the very thing making me terribly sick and exposing my entire family to constant mold infected air. Seeing our home lacking the life and energy it had just a couple weeks ago brings me a sadness I cannot explain. Knowing what I do now about our current home, I am convinced that my three houses prior to this one (two with Bryan) were also poisoning me. The very first house I lived in alone after college is where my symptoms first started and I know I have been sick since.
I have come to learn that 25% of the population lacks the ability to bind molds and rid their body of them. People, normal ones anyway, make a binder that sees mold as a threat and then forces it out of the body. Being a moldie means that my body lacks the binder and the cleansing process. My mold scores are extreme. I am very sick. Once the mold is dealt with, I have to tackle the SIBO and the yeast overgrowth in my gut (also a result of mold toxicity). Until our home is remediated and cleared by follow-up testing, I cannot be in there for more than 30 minutes at a time.
I am mad. I am sad. I can’t fall decorate. Our pool got closed early. My kids can’t use their playground. My family is sleeping on air mattresses and in a pack-n-play while sharing one bathroom and having a fraction of our belongings. On the flip side, we are making due with what we have, living life exactly the same, in a much smaller footprint, and we are so beyond thankful for our friends giving us a place to land when our lives got tossed up in the air. Our kids are wildly resilient and haven’t missed a beat in all of this mess; they went from my parent’s house to Bryan’s parent’s house to a cousin’s house and finally ended at our temporary house. No complaints, just excitement and joy. They constantly tell me to rest and take care of me when I am not well, bringing me fluids, books, their favorite toys, flowers they pick, and laying by my side.
We are a faith based family and I know that God wouldn’t overload me beyond my capabilities. When 2020 hit, I focused on shifting my mentality and only allowing myself to be concerned with what was within my control. As it turns out, that skill has become far more impactful that I could have imagined…and in such a quick amount of time! I can control many things in my life but mold, mold I cannot control! In a tear filled conversation with Bryan I told him that I wished we had never bought our house last May. His response? “I’m so glad we did because now we finally know what has been ailing you all these years and now you don’t have to feel like you’re crazy with all of these symptoms and no solid diagnosis.” Silver linings. Green Light.
We are in the process of fixing the house and treating my toxicity. There will be a long battle for me to regain what has been lost and some of the damage may be permanent. From what I can tell, my mold illness has weaved itself into my urinary system, digestive system, neurological system, respiratory system, and my reproductive system. I remain hopeful of a full recovery and feel so thankful for a diagnosis I can hang my hat on. Furthermore, I am forever thankful that we found this after a year and not ten years; nothing in this world is more important than keeping my family safe and healthy!