I hear many misconceptions about mold toxicity these days. In last month’s series on chronic health issues, I discussed some general information on mold-related illness. Because I see so many patients affected by mold toxicity, and I hear so much confusion, I’d like to clear the air by dispelling the top 10 myths I hear surrounding mold-related illness.
1. Mold is causing my disease.
In most people with chronic inflammatory response syndrome (CIRS), the name for mold-related illness, this response is caused by non-mold substances. Causes of CIRS can include particulates in a building, soil-based organisms, gram-negative rods, endotoxins, adjuvants, and other things that can activate the immune system. Toxins found in water-damaged buildings account for 80% of all CIRS. Only 20% of that is attributed to actual mold. The other 60% is caused by different toxins that occur in water-damaged buildings.
2. Urine mold testing is required to make a diagnosis of chronic inflammatory response syndrome (CIRS).
Urine mycotoxin (or mold) testing mostly shows residual mold from foods, and not from an inhaled mold. Inhalation is the way people are exposed to mold in water-damaged buildings. If you eat a bunch of tacos with moldy cheese, your urine test might be positive but not reflect what you’re inhaling.
3. I can’t have chronic inflammatory response syndrome or mold illness because my house and workplace are clean.
Chronic inflammatory response syndrome is an immune-activation disease. This means that it can be caused by a past exposure, like a moldy building you lived in long ago. Your current illness may have been triggered by a recent, acute event like a concussion, a tick bite, a personal trauma, etc. This is what makes diagnosis tricky. Exposure from the past can contribute to symptoms today. Your inability to detoxify can set you up for chronic illness even though you may not be currently being exposed.
4. I don’t have CIRS because all of my lab testing is normal.
When I hear this statement, I usually ask: Which lab tests? Typical labs, which check basic thyroid levels, basic inflammatory markers, etc., don’t show CIRS or mold-related biotoxin illness. This requires specialized testing to assess the innate immune system and its activation. Standard labs can be normal even though the patient may have severe symptoms.
5. I know my house doesn’t have mold, because I just had it inspected.
When the right kind of inspection is done – typically by a building biology specialist or environmental biologist – they can sometimes find mold when a typical inspection does not. Inspectors are often only visually looking for signs of obvious mold. But now we know, as we talked about above, that we need to look for more than just mold. It’s also important to check for particulates in the air filter, moisture in the air, moisture in the wood, an unencapsulated crawlspace, etc. All these are things that contribute to indoor air quality and the environment. If you actually see mold, it’s late-stage. Ideally, you would catch it before that.
6. I need a fancy, expensive filter that was specially designed to remove mold.
This is a common misconception and isn’t true for most people. 99.96% of all air particulates can be removed by a basic, true HEPA filter. Removing these particles attached to VOCs, mold toxins, etc. with a standard HEPA filter will get over 99% of all the toxins out of the air. There are some people who are exquisitely sensitive and do need the extra filtering, but for most people, a good HEPA filter is all they need.
7. My urine mold test was positive, so I must have CIRS.
The diagnosis of chronic inflammatory response syndrome has three parts. The first is based on symptoms. The second is based on lab tests. And the third is based on ruling out other things. Lab tests that are used to assess CIRS do not include urine mold testing. Urine mold testing can be from foods like corn and cheese and does not reflect your immune system or health status. It is important to consider that the diagnosis of CIRS is based on 13 clusters of symptoms. Having at least one symptom in a minimum of eight of these 13 clusters tells me that a patient has CIRS with 95% accuracy. Urine mold testing doesn’t come close to this level of accuracy.
8. If I have mold in my house, I have to move.
This is something that’s commonly discussed around the community, and it is not true. Most water damage and mold issues can be addressed. The cost of selling a house and moving is typically much greater than the cost of remediation. Normally the cost of remediation will run anywhere from 5% – 8% of the value of the home if it’s severe. If it’s mild or moderate, the cost is less. Just selling your home alone will cost 6% of its value, not including moving and other expenses. In most situations, the most cost-effective thing to do is to figure out how to remediate the problem.
9. If I have mold in my house, I have to throw everything away.
Sometimes patients tell me they were told to get rid of all of their furniture, carpets, and many of their personal belongings. For the vast majority of patients with CIRS, this is not the case. Just cleaning the air and removing the source will be enough for most people. However, there is a small subset of patients who are so exquisitely sensitive to mold toxins they will have to get rid of their personal belongings. I’ve seen hundreds of patients with CIRS, and to date, that’s only applied to a handful of them.
10. My mold plate testing was negative, so I don’t have mold in my house.
Mold plate testing is incredibly inaccurate. For every single spore in the air, there are 500 micro particulates. A negative spore plate is not a good indication of the absence of mold. If it’s positive, mold issues are severe. A mold plate that lights up with lots of growth shows serious issues. Just because you don’t have enough spores for growth doesn’t mean you don’t have thousands and thousands of those micro particulates.
ERMI (Environmental Relative Moldiness Index) and HERTSMI-2 (Health Effects Roster of Type-Specific Formers of Mycotoxins and Inflammagens – 2nd Version) are the standards for evaluating a house for water damage. Even this is tricky because it may relate to an old exposure versus ongoing mold issues. The best thing to do is have an indoor air quality specialist or a building biologist evaluate your home.
My hope is that this is helpful in clearing up some of the myths surrounding mold-related illness. If you’d like to learn more, check out my blog series on CIRS & Mold-Related Biotoxin Illness!
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