My Family’s Personal Mold Exposure Story and Recovery Journey
I talk (and for good reason) about the physical and mental trauma toxic indoor mold can cause; It is a deeply personal and raw topic; I am going to share my (somewhat) condensed story below.
It starts in 2019: we bought an older home (built in the 1950s) and consequently in this new (to us) environment. Over time, health problems started to arise for me, and also my youngest child, my daughter, and husband too.
Subtly, I was becoming more swollen, tired, unquenchable thirst, & eventual 25 ish lb weight gain over time. I thought – well I had stopped breastfeeding so my calorie expenditure became different, I was sedentary/working 60 hours a week, and I was stressed as my youngest was also starting to have serious, ongoing health problems. His first year of life was pretty uneventful, but after age 1 once we got into our new home, respiratory problems and other health problems like eczema and diarrhea seemed to “come out of nowhere” – later we will learn it wasn’t out of no where.
Side note: Bodily symptoms are never random. The body is smart and alerting you of something; you just have to listen and dig deep enough to find the root issue even if surface level, conventional labs show “everything is normal.” Look into the check engine lights BEFORE the car is on fire.
My son started having repeated episodes of difficulty with breathing (shortness of breath, rib retractions). This results in an ER trip almost every month (sometimes multiple times per month) for ages 1 through 3, sometimes with hospital admissions. He ended up being labeled with asthma and a daily line up of drugs (inhalers, steroids, zyrtec). I didn’t love all these medications on board as some had side effects and cascade to other health problems, but they were keeping him alive and breathing; As a Functional/Integrative Medicine aligned practitioner, I do still say there is a time and place for conventional care and it shines in emergent and surgical situations.
Meanwhile, I started to get yeast infections every single month (blah!!!). And every month, I would call my OB/GYN and was given Diflucan (a prescription antifungal) every month, and eventually higher and longer doses of Diflucan. I had to initiate a work up to rule out common reasons why a person could have recurring candida that I knew from all my schooling (HIV – worked with needles alot being a diabetes educator- and diabetes). Nothing came back positive.
I eventually decided to have a mold inspection company coe out to our home to check for mold as I (a clinician) knew mold was immunosuppressive and could be at the root of the problems my son and I were having since there was no other good explanations yet. The first inspection company’s flashlight look around in our attic led to “you are good,” no mold visually found and I trusted their opinion (dietitians obviously aren’t trained in home mold inspection).
Some time has passed….
I still was having my “mystery” lingering health issues. My hair had gotten thinner with time and I cut it all off. I was still having monthly yeast infections, I was so tired, I was “puffy” and felt swollen, bloated, and I am still up around 25-30 lbs, which didn’t feel good on my petite frame.
Since no mold was found (due to piss poor evaluation) and my doctors couldn’t figure it out (because they weren’t mold literate and not doing the right testing), I chalked all this up to being a tired, working mom in a shitty economy with a sick child with no help or support other than my husband who was also working his ass off too and being dad. We were spread thin, like many other working families. Well there is only so much time in the day and I gave myself grace; my team and my son’s team of specialists weren’t figuring it out either.
A while later at my annual physical, I next saw my PCP for a 10 minute appointment (the healthcare system is so broken; what can be thoroughly accomplished in 10 minutes at outpatient settings?); told her about my symptoms, stressors and that I needed a referral (we now had a HMO plan) to get back into functional medicine for more of a work up as I was beyond frustrated. I was told, “they test too much; you just need to take Lexapro. It’s all in your head.”
Side note: I am not anti SSRIs (medication for depression or anxiety) – they can serve a time and place, but did I really have anxiety psychologically speaking or was anxiety a physiologically driven from something deeper? I wanted to get to the bottom of it first as I knew/know there are risks to taking SSRIs too. She did place the referral after I begged and I got on a 9 month waiting list. I kept questioning mold this whole time, but the mold inspection companies said there was none in my home, so I trusted them. (I didn’t know at this time in my personal or professional life about urine mycotoxin screenings, CIRS panels, VCS testing, or any of the medical literature on mold illness by Dr. Ritchie Shoemaker, Dr. Neil Nathan or work by Dr. Jill Crista).
When my son was admitted to the ICU for respiratory failure, that was the straw that broke the camel’s back. He had broken down and I was breaking down too. One mold literate ICU doctor asked, “has your house been checked for mold?” I said yes of course, but I had such a light bulb moment and really took to heart that something in our environment had got to be figured out. The day my son was discharged was the day we came home and ripped open a wall and I called another mold company. However, their air testing found nothing. I was shocked! Then what the hell was going on?
My son and I were still patiently waiting to see a top Functional Medicine Doctor at Northwestern Medicine. I needed someone who was in-network, could order testing and also do a deep dive on the scenario. I couldn’t swing more out of pocket costs right now (we had medical bills, time off work isn’t paid when you are self employed; my son was eventually seeing 7 specialists that we spent a lot of time at) and go elsewhere as much as I just wanted to order the testing for us. I should have just put the few hundred on my credit card and ordered it myself as it would have been an investment in answers and saved us thousands in the long run but again hindsight is always 20/20.
A few weeks later, I still had this gut feeling that something was still wrong with our house. I can’t even begin to describe the level of frustration and fear. Despite so many Physicians and family/friends telling me to “just let it go,” I called for another opinion after more research for my continued suspicion of mold in our home.
Green Homes Solutions came out and DING DING DING! They performed different testing which confirmed we had a severe mold problem that needed remediated. Aspergillus was overgrown in our crawlspace (that no other company thought to check the crawlspace), and aspergillus was in our attic. Ahhhh! And it had leaked down a wall too. I could have pulled my remaining hair out!
Turns out that using a flashlight and some air testing doesn’t cut it for indoor mold diagnostics
There are varying opinions out there on this (just like varying opinions throughout healthcare on all topics). Remediation, fogging, small particle cleaning was done and my house instantly had a different, better, fresher scent to it. I also cannot tell you how physically, emotionally, psychologically and financially RELIEVED this made us – to get to the bottom of it and solve it!
We finally got in to see a Functional Medicine Doctor, and we are now armed with the fact that mold exposure was a real culprit. Dr. Shannahan did some testing to see the extent of the dysfunction and cocreated a protocol to address the snowball effect of mold as seen in the “additional testing that I didn’t need” according to a conventional care Doctor of mine. I was not prescribed one prescription – all the dysfunction was dealt with via nutrients and various clinically studied nutraceuticals (binders, antioxidants, herbs, probiotics, antimicrobials). My little boy was also seen too and we got so many more answers for him. That testing gave us so much clarity and details about our bodies.
The functional testing and approach helped me personally, and professionally it fine tuned my vision to help others via functional nutrition. As of today, I can offer more to my own patients – more knowledge and more testing available, including urine mycotoxin testing (after continuing education on mold illness and CIRS – chronic inflammatory response syndrome). I eventually was diagnosed with CIRS by Dr. John Whitcomb – a CIRS Physician. And then I became a CIRS proficiency partner myself!
It first took years of personal experience to open my eyes and then professional experience coupled with ongoing continuing education. I know our story is just one, and sadly one of many, but telling stories brings awareness and hopefully plants a seed in others’ brains in the quest of finding their own answers.
I have reflected time & time again, how that when we dove deeper, there were so many more answers and consequently more tailored interventions. It’s a shame that it took so long, and if I only knew then what I know now…
Moving forward, I choose to “take the pain and turn it someone else’s gain.” If YOU have “check engine lights” going off, do not ignore your body’s signals – I can help you navigate this!
Testing and answers help drive the right care plans.
I use these expressions: “overturn the stones” and “test, don’t guess.” Ordering certain tests are in the scope of a Registered Dietitian and providing medical nutrition therapy based on the results is what I do all day everyday.
Also note that I understand that ICD-10 codes characterize medical conditions and a line is drawn when it comes to what meets diagnostic criteria. You CAN have degrees of dysfunction; just because it doesn’t fit into a ICD-10 code box, doesn’t mean it is not dsyfunction or a valid problem or that there are not other pieces of the puzzle that still need looked into; it warrants addressing or more digging. You just may need a practitioner with a different lens and a different skillset. I’ve learned this all too well in my personal and professional life, the standard “let’s wait an see” aka “wait until you are sicker” is generally not helpful. With me, you won’t get that but rather you will also get validation (I don’t dismiss symptoms), empathy, and adequate time to explore your questions & concerns.
Please understand that my family’s story is an extreme case. You don’t have to had life threatening situations for mold to be a health issue for you or your family. Mold can manifest in some many other ways. Did you know experts say 50-70% of homes have mold? These are not small numbers. Mycotoxins are often at the root of lingering or not fully solved health problems. They can be a causative or exacerbating factor.
So what can you do if you also question mold exposure:
If you have any inkling mold could be a problem whatsoever, consider looking into 2 main things:
- Start working with a mold literature practitioner and
- Do an ERMI Kit 1 of your home (simple at home dust kit that is medically acknowledge) and if you score is elevated hire a skilled mold inspection company
If you don’t know where to start, but have questions and concerns about the huge topic of mold and mycotoxins, I do offer an on demand Heal from Mold Online Program to help explain the general process in a stepwise fashion. It is for anyone suspecting mold in their environment or has confirmed mold in their environment and overwhelmed with what to do (and in the right order).
Get practical information and general protocols broken down in laymen’s terms so you have a game plan that is evidenced based and written by someone who has been there, and now guides people through this professionally.
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