In the mold illness community, there is a beautiful wealth of information and firsthand stories. This is wonderful to see, as it validates people navigating mold illness during an incredibly hard and isolating time.
As with anything, misconceptions about mold illness often lead individuals down a path of ineffective and sometimes harmful approaches. It's important to be aware of these issues so that one can navigate the nuances of mold illness treatment with ease and with a decreased risk of treatment reaction and treatment failure.
Myth 1: The Necessity of Pushing Through a Herx
First of all, not every reaction is a Herxheimer Reaction. Fun fact - herx reactions more so apply to reactions that occur as a result of antibiotic use, especially in spirochete infections, such as Lyme. Silly semantics aside - treatment reactions DO exist. Contrary to popular belief, enduring the discomfort of any treatment reaction is not necessary.
Many claim them to be a sign of treatment effectiveness — and many people suffer as a result. The sad part is that these reactions may be minimized or altogether avoided if your treatment was tailored to your specific needs.
One may need treatment prep, lower doses, a slow increase in medication and supplements until the individual goal doses are achieved. For instance, addressing mast cell activation or gut health first or exploring different detoxification methods may be necessary first steps.
In all reality, this reaction might actually be your body signaling the need for a pause or a strategic adjustment in treatment. The key is to listen to your body's cues and adapt your approach accordingly, rather than adhering to the notion that discomfort equates to progress.
Myth 2: The Superiority of Natural Treatments
The assumption that natural remedies are inherently better for treating mold illness does not hold up under scrutiny. The reality is that you need to do what's right for you. If you know that natural products cause an issue for your histamine intolerance or oxalate levels, then maybe they aren't right for you. Also, many subpar natural products and supplements can be contaminated with heavy metals, pesticides, other products, or even with mold or mycotoxins! This is why I always suggest that people purchase their supplements through a reputable source such as Fullscript.
Another point of view is that pharmaceutical interventions can provide more targeted and efficient outcomes for others, saving time, money, and even unnecessary reactions in some cases. While the effectiveness of ANY treatment varies widely among individuals, sometimes, a combination of both natural and pharmaceutical approaches yields the best results. Ultimately, treatment should be personalized, taking into account each individual's unique response to different therapies.
Myth 3: The Requirement for Specific Binders
The concept of matching specific mycotoxins to corresponding binders for treatment is a topic of much debate. However, in practice, clinical experience does not support this approach. The magic of binders comes from their increased surface area - this increased surface area helps to mop up toxins (and unfortunately, the good stuff too) through a process called adsorption. While not perfect, a good visual to understand this is when little pieces of Styrofoam become (annoyingly) stuck to your hands. The bigger hands you have — the more space the Styrofoam will have to stick. This "stickiness" is why binders are so helpful. They carry the toxin out of your body via the stool. The body engages in something called "enterohepatic recirculation" - fancy language for bile being absorbed in the intestine so that the body does not have to make more bile. Using a binder prevents bile from being reabsorbed - along with the toxins. This does one of two things: prevent a toxin from having its second chance at causing damage, and allow the bile and toxins combo to be carried out in the stool.
Now don't get me wrong, I personally love digging around in the scientific literature to optimize treatment - and many years ago, I actually promoted this practice. But over time, I found that people were spending money on unnecessarily expensive fancy binders - when the practical - and frankly boring charcoal did the job. After all, there's a reason why Emergency Rooms use charcoal for emergency interventions (re: overdoses). With all this being said, sometimes people do not tolerate binders, or may better tolerate one binder over another. It's in instances like these that I suggest using something other than charcoal as a binder - if a binder is needed at all!
Myth 4: The Possibility of Recovery While Remaining in a Moldy Environment
One of the most challenging aspects of mold illness treatment is accepting that recovery is unlikely without first removing oneself from the mold-contaminated environment. The hope of improving while still being exposed to mold is understandable but just won’t happen. Not only will you not get better, but you may also get worse—at best, you’ll stay the same.
To be clear, you don’t need to remediate or find the perfect space or have all the answers. Temporarily leaving the space is acceptable. For example, in instances of work exposure, you may be able to work from home, or even take medical leave while you figure out the next steps.
Similarly, you may be able to rent a car, attend church virtually, or even stay with a friend for a period of time.
The goal is not perfection; in my experience, you’re looking for a situation that is different and/or better than the one that led to illness. Realistically speaking, you’ll never find a truly mold-free space, as spores exist all around us. In fact, this is often an ill-informed excuse I hear from people who interact with those suffering from mold illness. A gentle explanation, pointing out the differences between a large colony of mold in a home versus some spores that are carried in on the wind, usually helps to clear up any confusion.
No matter what, leaving the moldy space is always a hard choice, but it is a necessary step in the healing process.
Myth 5: Genetics are a Death Sentence
The belief that one’s genetics, particularly the presence of specific HLA genes, seal one's moldy fate. In my clinical experience, I’ve seen people with the “dreaded gene” both experience great healing and some struggle with recovery. Similarly, I’ve seen people without the “dreaded gene” experience struggles with recovery and get better quickly. I was CIRS certified in 2016, and just did not experience the impact of the “dreaded gene” that many others embrace.
Sure, genes do play a role in how the body responds to nearly anything. However, I tell my clients that if your genetics were so problematic, you wouldn’t be here today. It is important to work on supporting the genetics you CAN work with - for instance, your phase 1 and phase 2 detox genes. You can actually use different things to increase their ability to work - like green tea, garlic, and others. As such, one can tailor interventions to help optimize the function of these genes. You can also take things to slow them down—for instance-- this is why people who are on cholesterol medication can’t drink grapefruit juice, and why there are medication interactions. THESE are the genes you should be focusing on—because you can actually do something about them. You can’t do this for the HLA genes.
Plus, how dare one remove hope from people when they are feeling ill? The “dreaded gene” doesn’t exactly inspire hope for recovery… that’s probably my biggest gripe about it all.
The reality is that healing stories vary widely among individuals, regardless of their genetic makeup. Focusing on the individual’s presentation and supporting their body’s natural abilities to heal needs to be the focus.
Conclusion
The mold illness community has so many wonderful people who have experienced recovery in a wide array of ways. Sharing their stories is well-intentioned, but over time, the nuances of their experience, shared from one to another, can result in a different story being told—like a game of telephone. We need to do our best to find the information from the source- no matter the field. This is why I spend so much time reading the medical research and teaching. Getting the full picture honors not only the subject but also the person relaying the initial information. Misunderstandings happen, and that’s ok—but that’s why I encourage people to keep digging for answers, as your experience will be completely different from anyone else. Get all the information you can, from the source, and then take only what you need that works for you. The journey to recovery is personal and requires a tailored approach that considers the unique needs and circumstances of each individual.
When experiencing symptoms related to mold exposure or mycotoxin illness, it is essential to seek guidance from a mold illness specialist. Vitality doesn't have to stop with menopause and by addressing mold-related concerns one can restore balance and improve overall quality of life.