The Many Names of Mold Illness

Mold illness has many names, and while there are several reasons why mold illness isn’t recognized in mainstream medical care yet, it doesn’t help that there’s little consensus on what to call it when someone gets sick from mold. Because mold is becoming a popular topic and people can have some surprisingly strong opinions about what to call it, I thought it would be helpful to offer a synopsis of the names and definitions out there.

If you’re new to the mold world, start here with the basics to get acquainted with the terms and basic understandings of mold.

What Is Mold Illness?

Mold illness is a condition caused from being exposed to toxigenic mold. Some people say it’s not real, some people say it’s all psychological, some people say we need more research to better understand how it impacts humans, and some people- those of us whose lives have been upended by mold- we’re working on surviving.

Some common symptoms of toxic mold exposure include brain fog, difficulty concentration, trouble finding words, difficulty remembering things, joint pain, pervasive fatigue, shortness of breath, gastrointestinal concerns, vertigo, difficulty regulating temperature, nose bleeds, and my personal least favorite, heart palpitations. To learn more about the symptoms of mold exposure, read this post.

Unfortunately, the research on mold is kept under wraps because there is a lot of money invested in not acknowledging mold illness. Honestly, if I wasn’t working on recovering from mold exposure, I don’t know if I would believe that mold can make someone so sick because the research remains inaccessible. What I can tell you from personal experience, however, is that mold has upended my life, and most days, I feel like a shell of the person I was even just three years ago.

Mold Allergy

I have heard people attempt to label mold illness as an allergy many, many times when explaining my needs to them. My guess is that their brains are desperately searching for a schema to help them understand the information I’m sharing, so they attempt to assimilate what they hear by organizing it under the heading of Allergy. Instead, we need them to engage in accommodation where they modify the information they know to make space to organize new information. Basically, I’ve learned that I can give people’s brains a cue that this will be new information by saying something along the lines of, “I have a condition where I am highly sensitive to toxic mold and must avoid exposure to it. You may have heard of people being allergic to mold, but this goes far beyond allergies.” That seems to do the trick in my experience.

People have suggested that I get allergy shots for mold, find a medicine to take to tolerate exposure like people who are lactose intolerant, or just wear a mask in moldy spaces. Once I explain that asking me to be around toxic mold is the equivalent of asking someone with a severe peanut allergy to work in a peanut plant, they start to understand how serious this is.

It is accurate that mold exposure can trigger symptoms like that of an allergy: congestion, sneezing, coughing, sore throat, and itchy eyes. Even the CDC recognizes this! Surely, it is possible that some people are simply allergic to mold. The impacts of mold go far beyond this for many people, however.

Chronic Inflammatory Response Syndrome

Chronic Inflammatory Response Syndrome, or CIRS for short, is Dr. Ritchie Shoemaker’s title for mold illness. It’s also the diagnosis I’ve received. To be diagnosed with CIRS, you’ll need to seek out a functional medicine doctor who specializes in mold because your regular primary care physician will run all your labs and tell you you’re golden. My primary care physician picked up on low vitamin D and vitamin B, for which she prescribed a supplement and sent me on my merry way. She had no idea, however, that vitamin D and B deficiencies are both connected to toxic mold exposure. Well, would you look at that?!

A functional medicine doctor who specialized in mold will complete a comprehensive interview with you to learn about possible exposure to mold in your life as well as run a series of specific labs and tests. For me, I had about $6000 worth of blood work completed, MRI with NeuroQuant, and a thyroid scan to rule out a previous diagnosis of Hashimoto’s from a functional medicine doctor that was not mold literate. The MRI can determine points of atrophy in the brain which correlate to mold exposure, and your blood can tell you all kinds of interesting things about being exposed to mold.

The good news is that there is a clear-cut, regimented treatment for CIRS! Hooray! The complicated news is that treatment can start only after you are out of exposure. You must practice mold avoidance for treatment to work. Any practitioner that tells you otherwise and tries to push pills, supplements, or air purifiers as a long term solution is either not mold literate or has some sinister intentions.

I’ve recently read some grumblings about CIRS and how it has complicated a simple diagnosis and a simple solution. If we keep things simple, the diagnosis is mold illness and the treatment is mold avoidance. That way, the focus is on learning to trust the body’s signals when exposed as well as learning to trust the body to know how to heal. I’ve got to say that I’m certainly a fan of this approach given my love for all things natural, organic, and crunchy.

Chronic Fatigue Syndrome

Chronic Fatigue Syndrome is also known as CFS, and Erik Johnson was the prototype for this condition after mold exposure. If you’ve heard of CFS and think it’s just about being tired all the time, I recommend that you check out the history surrounding the condition, which Erik documents in episodes two through six of his podcast, Exposing Mold. There are political and financial underpinnings that caused CFS and mold illness to be swept under the rug after several people got sick from mold exposure in 1985 in Lake Tahoe. It is well worth the listen if you want to know more about why mold isn’t regulated in buildings like asbestos or lead. Erik’s focus is on mold avoidance, which you can learn more about from his podcast, this website, and in his book.

Biotoxin Illness, Mold Illness, & Mold Toxicity

From my understanding, biotoxin illness, mold illness, and mold toxicity are simply other names for the mold illness described above. I haven’t yet been able to find much information on how these names came about or who tends to use them. I do know that Dr. Neil Nathan, another big name and trustworthy practitioner in the field, uses the term mold toxicity in his book, however. And the book, by the way, is a great read if you’re into the science of how mold and other toxins impact the body and how to heal. There are also some truly inspiring stories of people who have healed in there.

What’s In a Name After All?

If you know Shakespeare, you’ll be familiar with Juliet’s line: “What’s in a name? That which we call a rose by any other name would smell just as sweet,” from Romeo and Juliet. Ah, and I couldn’t agree more. No matter what label we use to describe it, all of these titles point to the same singular condition: illness from toxic mold exposure. If only we had just one name for it, though, because that could make a difference in recognition.