Poisoned: Our Mold Story

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Mold destroyed my health. It destroyed my kids’ health. The crazy thing? We all experienced symptoms that took 9 years for my youngest daughter and 7 for my oldest daughter and about 10 for me — 14 doctors to figure out.

What’s worse? It could have been much less time.

The mold tester I hired 5 years ago missed finding it and the testers last year missed finding all of the mold in our house, costing us even more time.

When we moved into our house about 9 years ago, my youngest daughter, JJ, began having seizures. The first time, I had no idea I was seeing a seizure until the paramedics explained it to me. It wasn’t a tonic-clonic shaking. Instead, her eyes would go vacant, sort of staring off into space. Honestly, it looked like her soul had left her body. And her body? Her body was bizarre… limp, wet with urination and vomit, yet often with a twitch. Like one time, she rubbed her belly button in circles. Another time, she picked her nose compulsively. The first seizure lasted 45 minutes. The rest lasted just as long –until we stopped them with an injection. These put her into respiratory distress but that’s a whole different tangent… Needless to say, it was scary and awful. Her first neurologist told me she might be brain damaged if the seizures continued to last so long. I pretty much stopped sleeping and lived with intense worry and anxiety.

 

I’m positive that worry and lack of sleep are why I got the Epstein Barr Virus seven years ago. My daughter, AJ, got it at the same time, too — we don’t know which of us was first but it doesn’t really matter now. Later we would learn that EBV was probably what compromised our immunity making us unable to process the mold toxins that we’d been able to process before. As for my youngest daughter, we didn’t realize she was allergic to almost everything until recently (her only symptom was allergy shiners) but probably that’s why she also was susceptible to the mold — the allergies.

 

Well my EBV didn’t go away after 3 months like it does for most people. Fatigue, joint pain, muscle aches, brain fog, . . . AJ and I were barely functional for months. . . then years. AJ missed 3 months of school but had to go back sick so she wouldn’t flunk out. I stayed in bed most days. I kept thinking, was this only EBV? Was it something else?

 

That’s when I first wondered if something was seriously wrong with our house. Five years ago, we had a mold tester come out, a tester recommended by a friend who worked at a reputable environment agency. He visually inspected the home, took some tests, charged us a fortune, and assured us that we had no mold.

 

HE WAS WRONG. But it took us 4 more years to find that out.

 

As for me, I usually took 3-hour naps. I had to save trips up or down the stairs because once a day as about all I could manage. I couldn’t drive most days because I was dizzy with fatigue. My brain fog was so awful that for the first time in my life, I had trouble reading and comprehending books. My hair fell out in clumps. I didn’t sleep well. I gained about 50 pounds. (Even though I was eating Paleo and Autoimmune Protocol.)

JJ’s stomach aches were bad. AJ’s body hurt, her headaches got worse, and she felt dizzy all the time. Over the next 5 years, I took both girls to 3 different pediatricians, many specialists at Children’s Hospital, and many alternative medicine practitioners.

 

As for me, I continued to persist. I wanted answers for me and for them.

 

I went to a naturopath who gave me tinctures, foot baths, and sauna treatments. I went to Reiki. I drove an hour to Boulder twice a month to see an acupuncturist who gave me (disgusting) Chinese herbal teas. I went to a second naturopath. I spent month after month searching for answers as well as thousands of dollars on supplements and treatments that did not work. Was I crazy? What was going on in my body?

our mold story: how our long term sicknesses were all due to mold toxicity

Occasionally there were days and even weeks where I felt better. I’d think– it’s working! I’m cured! But I wasn’t better long term. Nor were my girls.

 

JJ’s digestive issues became more severe… c-diff three times in the past year, parasites twice, giardia twice, leaky gut, H pylori, and SIBO. We even met with the head of the GI department at Children’s Hospital. He didn’t know what to tell us and said we could try anti-depressants and neurofeedback for her now constant level 7 of pain. (She clutched a pillow to her stomach all the time; often, she’d lie on the floor crying. Talk about feeling hopeless as a mama!) And we did take her to neurofeedback and EMDR. But it didn’t work. Because ultimately it was a medical issue. We needed a functional solution — we needed the root cause.

 

Then we found a functional medicine doctor who saw all three of us. It took him 9 months to put the pieces together. We all had mold toxicity.

 

Finally, we’d found the underlying cause of all our symptoms. YES!! Progress!! (That was spring 2017.)

 

Review of Our Symptoms:

  • Chronic fatigue
  • Brain fog
  • Body pain
  • Joint pain
  • Seizures
  • Headaches
  • Dizziness
  • Weight gain
  • Hair loss
  • GI infections
  • Stomach pain

 

But our mold story was not over.

 

The mold testing is an air test. (Which has pros and cons but that’s a whole different issue.) The inspector comes to your house and visually inspects where you might have mold. Then, they test where they suspect there could be mold. I got TWO different tester’s opinions and they both said there was a little bit in a large basement room (on a carpet tack strip) plus some random spores in my youngest daughter’s room.

 

We remediated both rooms.

 

But do you know what? We did not get better even though we were on the doctor’s mold protocol. Why? Because we were still living in a toxic environment. We still had mold in our house.

 

Two months passed after our first remediation before we realized it though. It happened when I flooded the kitchen sink — although I truly believe that God made our kitchen sink flood so we could get answers. Because that’s when we noticed that on the ceiling underneath (in a closet that we’d never used in the basement,) there had been previous water damage.

 

The mold tester returned. Yes, we had mold in the kitchen under the sink and the closet below.

We remediated again.

And retested the air. But, it was still positive for toxic mold spores.

It was probable, the remediators said, that the mold had gone up into the ceiling joists and tiles. Mold spreads fast.

our mold story: how our long term sicknesses were all due to mold toxicity

By this time, I was totally fed up with these so-called “expert” opinions. I asked the air tester (a different person than the remediator) to test every single room and closet. And oh, my, did we discover the motherlode of mold. Everywhere (we think) that the previous owner had redone the plumbing, he’d done it wrong, causing water leaks which created mold. (Laundry, sinks, a shower, and a toilet.) Including the deadly black mold, Stachybotrys.

 

Mold was on the sheetrock, ceiling tiles, and floor joists so our basement needed to become unfinished. We remediated for the third time. (The photo above shows only a tiny spot — there were entire sheetrock walls covered but I don’t have those photos.)

 

My youngest daughter and I were the sickest so we moved out — we stayed with friends and at hotels. (In retrospect, I think those places all had mold, too. I saw visible mold in 2 of the places. Sigh.)

 

After a month, the third remediation was done. AND the air tested clean in our house!!!

 

That was August 2017.

our mold story: how our long term sicknesses were all due to mold toxicity

Two months later, my fibromyalgia pain was gone completely!! Unfortunately, AJ got worse — I think she was detoxing too fast (herxing) after a mold-related MARCoNS treatment. We almost withdrew her from school. Fortunately, she got well enough to finish the semester which was a huge relief. Since then, she’s been slowly making progress in the last few months. JJ’s been making slow progress as well.

 

Now it’s March 2018 and although we are still showing mold in our urine tests, things are improving. I am sort of better. The kids continue to improve. JJ currently has giardia and H pylori again due to having NO IgA from the toxicity. It will take them longer to get the toxins out of their bodies since they’re not eating like me (AIP), not able to do the medicines every day (because of constipation), nor doing the infrared sauna as much as me.

 

There have been blessings and life lessons along the way.

 

My faith grew deeper. It’s much more real to me now.

 

I’ve experienced huge emotional healing from trauma. Before I knew what was wrong, a few years ago I started seeing a somatic experiencing therapist because I wondered if I was manifesting my sickness. She’s been such a huge help to me in my emotional healing journey. For example, watching my babies be so very sick tore at my heart. But it gave me an opportunity to not be enmeshed with them, let them have their life experience, and be present with love and support. It’s not easy. In fact, it’s been really, really been hard — but I already see how it’s so worth it long term. That’s just one example. There are many more. (I love therapy.)

Being sick also makes you realize who those true friends are. I saw that hadn’t picked friends wisely. That ties into my past trauma led to issues of trust which I am still working out. Suffice to say, it’s always a blessing to see the truth, as hard as it might be.

 

Because my foggy brain couldn’t think deeply, being sick helped me develop a stress-free, mindful way of being in the present moment. Which is super cool. Now that my brain is back online, I have that new habit of being mindful. Go, me!

our mold story: how our long term sicknesses were all due to mold toxicity

Oh, and my husband, Jeff, is the best, most wonderful person in the world. He’s been my rock and so supportive. I love this man! Here he is in our basement working in his office — and throwing everything away that can’t be cleaned with Concrobium.

 

I hope my story will help you or someone you know. Maybe you know someone who has chronic fatigue syndrome or body pain or any of the other symptoms possible– now you can suggest that they consider mold as the underlying cause. If you have any questions about our journey or if I can help you in any way, please comment or email me. We don’t have to do this alone.

 

xo

 

Melissa

UPDATE: 2021 — Still working hard to detox!

In February 2021, I still wasn’t feeling great and had gained even more weight despite eating Paleo. Sure enough, my mold urine test showed mold still in my body.

We discovered our super expensive Tyent Water Purification system had MOLD INSIDE it!! Not the filters but between the metal plates where there were some organic paper-like substances. Filled with mold!!

This discovery changed everything. Just not drinking the water, I started to feel more energetic

Now, I’m doing a LOT of trauma therapy since there is a big link between trauma and health. I’m doing ozone injections and regular IVs of good detoxing things like Glutathione and NAC.

Energy is improving and I’ve lost 10 pounds!

God is good.

I’m hopeful and excited that the next decade and beyond will be much better!

Resources and Links:

Is Toxic Mold Exposure the Cause of Your Symptoms?, Dr. Jill Carnahan, MD

It Takes Time – Mold Stories from Survivors and Information

Directory of Functional Medicine Doctors

Judy Converse, Pediatric Nutritionist (A literal God-send! She’s helped JJ SO much!)

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38 Responses

  1. Hi Melissa,

    Thank you for sharing your story! Did you find that you needed to clean and purge a lot of your belongings to start healing? Do you have any tips on coming home after remediation? I develop foggy brain and sometimes fatigue when I am home. We are trying to deep clean everything, using natural dishsoap and water and we have hepa air filters running day and night. We got rid of our living room and bedroom furniture. I am wondering if my symptoms are just part of the process and it will start evening out at some point. I only have foggy brain when we are home. However, Our symptoms before remediation were different, so it is good news that those are gone. Our air tested clean and an air quality test turned out well also. But I know mold spores can cling to dust and items, and I am wondering if that is what is going on.

    Unfortunately, the contractor who remediated our home, although he has been very kind and helpful, does not seem to know how serious mold can be and I think they didn’t remediate using proper procedures (not containing the area, although they did use hepa filters). They did remove the large areas where there was mold, but other areas in the home that were smaller they only painted with mold killing primer, such as a cabinet door etc. And a main beam above the ceiling that had some mold they only sprayed with concrobium. We are also looking into replacing the air filters and vents in our car because I am certain there is mold in there, so I know that is an added toxin my body has to fight.

    And you’re right, other places we stayed at had mold. I was able to tell because I would immediately develop symptoms near the area or room where it was. Some places had a little, others more. My husband says I am like a mold hound dog 🙂 haha.

    1. I must say, if I am in an environment with no mold I feel totally normal and healthy. We’ve considered moving, but there are 2 dilemas. One, we no longer have the resources to do so. Our adventure away from our home was very expensive 🙂 haha. And two, what if the place we move to has some mold, as it seems most places do (I experienced some symptoms in almost every place we stayed at, we were out for more than 3 months and stayed in a lot of places). In that case we’ll end up in the same situation.

      1. I agree, I think there is mold in most houses. Which is why we remediated so we could know our home was safe. I hope you find a mold-free environment so you can feel better!!

    2. Yes — you’re the canary in the coalmine but with mold. I’m glad your symptoms are a little better. And yes, it takes SO long to dexox. I’ve been back on the binder and doing more sauna time and every month is a little better but it’s been 2 years of a mold-free environment. It’s crazy how long it’s taking.

      Did your remediator spray everything? Our remediator did do containment then sprayed everything with industrial concrobium to make sure he killed all the mycotoxins in the air. Then he cleaned our carpets with an outside venting system. We cleaned our ventilation system and added special HEPA filters. I have wondered about cars but didn’t test.

      I’d get rid of everything he painted if it has mold underneath… the special paint keeps the mold from spreading but the mold underneath will still give off mycotoxins which are poisoning you.

      It’s hard to find a good remediator — if you were here in Denver, I’d recommend mine for sure. He’s like family now.

      Sending you lots of compassion — you’re not alone. I’m happy to chat on the phone or Skype. Email me if you want — melissa@imaginationsoup.net.

  2. So glad to hear you’re on the mend. Hoping you can answer a question. When you’re recovering, will the mold symptoms occur as you’re detoxing? I’ve been out of mold for 3 months now. Using charcoal and antifungal. Now my hair is falling out again. Is this the mycotoxins fighting? Thanks.

    1. Cheryl,
      Ugh. I am so sorry you’re going through this, too. Sending you hugs!!
      I think it took almost a year for all my symptoms to really be improved. Like you, I lost my hair but I can’t remember exactly when that stopped. It took until recently for my hairdresser to say that I wasn’t losing a ton of hair in her shampoo bowl.
      It is weird that it’s a new symptom though — maybe something to ask your dr about? Or on the FB groups?

  3. I’m finally just catching up with your story now, and I’m so relieved that you and your daughters are safe and healthy. You’re an amazing mama. Here’s to self-care in 2019!

  4. KIM C SMITH says:

    Glad you are feeling better! I’m so sick and brain is so scrambled. I’m afraid I’ll never be okay again. My son is showing signs but I’m too ill to take care of him. We live with my 80 year old mother who is financing our lives. I’ve tried several detoxes to no avail; no binders, nothing has helped. I can’t think well enough to work and my mold illness has manifested mental issues; like psychosis. I’m afraid I’ll never make it through this to resume a normal life or care for my son.

    1. Kim, I am so sorry to hear this! It’s really really really hard — especially when you’re also a caregiver, too. Are you still living in a place with mold? That would be my best guess since nothing is working for you. My doctor was adamant that if we didn’t get the mold out of our everyday environment, nothing we did would get us better. (I was considering moving to a tent or a yurt if we didn’t figure it all out.) Homeowners insurance sometimes can pay for some of the costs of testing and remediating if that’s something you haven’t done yet.

      Keep fighting to get better!! I understand, really I do, how hard it is to fight one more day when you’re scrambled and tired and hurting. But don’t give up. Take it hour by hour if you have to. I would ask myself, “What do I need to do right now?” Make dinner. Okay. I’ll make dinner even when I felt like I could barely stand up. I didn’t think too far in the future, I tried to stay in the moment. (Partly, because I was too blurry to think ahead anyway.) Every day though, I would try to do something proactive if possible for our health. If it was make an appointment, I did that. If it was take my supplements, I did that. If it was get a 15th opinion, I did that. If it was read an article, well, you get the idea.

      Keep on, my friend. It is possible to get better. Email me anytime.

  5. Horrible. So glad you guys are on the mend. Oddly enough, my father-in-law is a sales rep for Concrobium!

    1. We bought a lot of Concrobium, that’s for sure!

      Thanks for your well-wishes, Juliane.

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    Hi! I’m Melissa Taylor, mom, writer, & former elementary teacher & literacy trainer. I love sharing good books & fun learning resources.

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