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Mold Sensitivity and What To Do About It

Filed underautoimmune, cfs, detoxification, environmental illness, healthy living, lyme disease, mold illness
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Cheese Plate with Sriracha © by Refracted Moments™

Mold.  Has another four-letter word ever been such a lightning rod?  Ok wait, don’t answer that.  But is there another microorganism in nature that triggers the entire range of reactions from fear to anger, not to mention the existential quandary posed by acknowledging your shelter (previously your family and source of protection) as your enemy?

“But there’s mold EVERYWHERE” you say as you take a bite of aged cheese.  ”So what do you want me to do, MOVE?”  you ask.

Mold Sensitivity: A Genetic Matter

First, mold sensitivity isn’t just about whether there’s mold in the air you breathe.  The amount and strains may matter, but more importantly, the person may matter.  ”Almost a quarter of the normal population is genetically susceptible to chronic mold illness.” - http://www.survivingmold.com/diagnosis/lab-tests  This means that if you’re in the 75%, you probably have no idea what mold sensitivity is or feels like.

Secondly, general allergies (which are a sign of an overactive immune system), you’re probably more likely to be allergic to mold.  ”Approximately 6-10 percent of the general population, and 15-50 percent of persons who are genetically prone to develop allergies (atopic individuals), are allergic to mold, according to the National Academy of Sciences.” - http://www.afhh.org/hhe/hhe_mold.htm

Now, if you’re one of the suspectible ones, you can pretty much count on indoor mold being an issue because “2011 NIOSH says that 50% of our buildings in the US are water-damaged.” - http://www.gordonmedical.com/unravelling-complex-chronic-illness/will-surviving-mold-mean-surviving-lyme/

Don’t Get Testy, Get Testing.

Here’s the problem.  If you’re exposed to high amounts of mold in your home and happen to be one of the susceptible ones, you probably don’t know what symptoms are related to this unless you remove yourself from the exposure for a prolonged period of time (which is a great test but not always feasible).  Fortunately there are other concrete ways to find out if this is a problem.

1. HLA-DR test. This is the first test I would do.  Here is Shoemaker’s chart to interpret the test and find out if you’re susceptible to mold, lyme, other pathogens, or all of the above (raises hand!)  This can be done by Labcorp.  Interestingly, 21% of the population is also susceptible to Post-Lyme Syndrome, aka Chronic Lyme Disease.  Bingo anyone?

2. ERMI test. If the test shows you’re genetically susceptible to mold, then it’s time to do a shakedown of your shack.  The ERMI test is the most useful indoor mold identification & quantification test, and Dr. Shoemaker recommends using Mycometrics.  When I was living at my old house, my c4a shot up to 28,000 (after I left, it went down to 2000).  The ERMI test showed that it was in the 75th percentile of mold levels in US homes.  I then cried myself to sleep and dreamt about a time when high percentiles on standardized testing were a good thing.

Ok So I’m Moldy And Vulnerable.  Now What?

I’m not gonna grind your gears.  And by you, I mean anyone with one out of any 120 strong opinions on what to do about mold.  I want to tell you about your options, regardless of your lifestyle choice.

1. If you’re single and frequently scream “screw you world and all your conventional trousers”, then going extreme might be an option.  You can move to the pristine desert.  You can custom-design a new home there orlook for a house on the market that’s made without any drywall or other materials that basically feed mold (good luck).  This is the safest experiment as it virtually eliminates mold in your home.

Why is drywall bad?  ”All cellulose–based building materials, such as drywall faced paper, cellulose insulation, plywood and particle board, represent mold food” - http://mishko.com/Mold%20Doc.htm On a budget?  If you’re not claustrophic, you can do all of this for around $7000.  My personal favorite materials are metal (aluminum & steel) and variants of styrofoam like expanded polystyrene.  Last winter, I turned up my radiant heater on full blast while it was snowing outside in single digits, basically turned my aluminum box into a wet sock, and even that didn’t lead to mold issues.

2. Halfway House.  Many patients have reported doing better from moving a drier city like Las Vegas or Palm Springs.  By moving to a dry-as-bones city, the likelihood of a crappy-designed house with drywall becoming moldy is reduced.

Another option is moving to better-designed house wherever you’re intent on staying.  The drop in appeal has to do with the importance of outdoor air quality.  If you live in a city with super-high spore counts, that would continue piling on your exposures even if you moved to a house with optimal design methods & materials. And in my experience, hepa filters don’t remove this problem.

Be clear about this: neither of these 2 options do anything to eliminate mold growth, but they’re probably better than staying in a known-to-be-moldy house and fixing the mold with bandaids.

Regardless of whether you stay or go, do the following:

3. Kill your central air.  Like drywall, which became popular because it was cheap, central AC/heating systems also became popular for the wrong reason: cheapness.  A central ducting system is very difficult to sanitize (which is why duct cleaners get paid bank to use snake-like tools to clean), and is often a closed loop system that draws air from the inside (so if the air inside your house is already bad, it just continues to pile on the badness).  When I had a mold dog come check out my old house (true story), he kept going back to the air duct as the main problem area.  After we cleaned this out, even my healthy family members’ health improved.

Instead, go old school.  Install window A/Cs (or even better for condensation, Portable A/Cs) if you live in a low-humidity region.  Similarly, you can get a radiant heater for each room.  Just change the filter in the cooling system, you’re good to go.  Low-maintenance, efficient, and compared to a long duct system, there’s simply much less surface area for mold here.  Separating the cooling from the heating (where mold thrives) is just common sense.  The window and portable A/Cs also draw a fresh air supply from outside.  Think this setup will cost more than a central system?  Think again.

4. Oxidize The Joint.  If you’re stuck with central ducting, stick an in-duct air sanitizer such as this one in there.  Because this system is meant for continuous use, the ozone needs to be kept at low levels (15%).  Still, this is far better than leaving your ducting system un-sanitized.  Even better is attaching a sanitizer onto a window A/C.  A similar fix is putting Thieves Oil, a potent mix of essential oils, on the hepa filter for whatever system you use.  This is so strong that it actually made me nauseous, but many patients have told me this works as a germicidal and mold killer.

5. Binders Full Of Mold.  If you’re mold susceptible, then your immune system isn’t “tagging” mold and mycotoxins for removal and you may need a little help getting rid of them.  Cholestyramine is the first-line option, but many patients still living in high-mold environments appear to not tolerate it.  Cholestepure, modified pectin, green clay, zeolites, chlorella, and cilantro are all alternatives worth trying.  In my opinion, if you’re exposed, you basically need to stop breathing for ingested binders to remove what goes into your airstream.  In this case, binders should be considered more as a supportive therapy than a fix for exposure.

 

DISCLAIMER: The information in this blog is not advice, and should not be treated as such. You must not rely on the information on this website as an alternative to medical advice from your doctor or other professional healthcare provider.
  • Corinne

    Hi Joey, you mean foam, and I am wondering if you know of a VOC free, non toxic foam insulation?

    • Corinne

      *mention foam, is what i meant to say

  • R

    You are leaving out a very important angle.. mast cell activation syndrome. Mast cells are known to activate in response to fungus. I know of quite a few people in my MCAD forums who have mold exposures as well. The symptoms are very similar to what I’ve heard other mold victims blame on hyper-reactivity to mold toxins. It could equally be a response to toxins as well as to fungal or biocontaminants in a water damage environment. There is also Dr. Dennis’s T cell theory, which might well be linked to mast cell issues as well. This would be in response to fungal spores.

    • http://blog.healclick.com/ Joey Chang

      I’ve never really separated mast cell responses from mold toxin reactivity in general. I’m sure MCAD go into more details about the mast cell component. This article is about the broader problem (mold sensitivity) and how to reduce exposures.

      If MCAD has more tips on reduce exposures successfully, I’m definitely willing to add these!

      • R

        But by addressing in general and in that general address, you address the extreme concept of moving to the pristine desert, I think it’s important to address the fact that some of these extreme responses requiring extreme measures might well be related to mast cell activation disorder of some sort which can be addressed. It’s heartbreaking to see people suffering and debating extreme measures they are not capable of making physically or emotionally or realistically and not considering perspectives beyond “toxins” and “extreme avoidance.” I would like to see this angle included in the community more often and with some appreciation of the significance of the role mast cells are playing in what we are calling “mold illness.”

        • R

          This article is called Mold Sensitivity and What to do About it.. this is or should logically be more than just about “tips on reducing exposures.” I don’t understand why people are so locked into toxin=illness=avoidance of mold only (?) and detox paradigm and not addressing the immune response itself. Complement can trigger mast cell activation as can antigen. So maybe fungus/toxin=complement and mast cell activation=avoidance (reducing the load of triggers in a way that works best for you.. since triggers become at that point anything that participates in the mast cell positive feedback loop) and addressing mast cell symptoms/cascade, then addressing potential infections and detox.

  • http://www.facebook.com/profile.php?id=1603672188 Lisa Petrison

    This is a good blog entry, Joey. Thanks much for posting it.

    I think it’s important for people who are considering doing any sort of avoidance to be really clear about what their goals are. And in general, I think there are two different issues to consider.

    The first is related to the idea that (as a result of either genetics or the illness itself), CFS patients generally do not have functioning detox systems with regard to a variety of different toxins, with the biotoxins being particularly problematic. Insofar as such a person is living in a blatantly bad environment (such as a house filled with Stachybotrys), every breath is going to cause an accumulation of additional toxin, leading to additional long-run damage and health disintegration. Based on what I’ve seen, the course of the illness for patients who stay in truly bad buildings over the years is inevitably downward. Thus, moving out of a bad building could be viewed as a defensive move — not to expect to feel better right away, but to prevent the possibility of getting worse. Someone who was poisoned with, say, nuclear radiation wouldn’t expect to have everything get better right away just because they got out of the exposure, but probably we all would agree that getting out would be a good idea anyway!

    The second is related to the hyperreactivity component that (based on what I’ve seen) possibly all and certainly many CFS sufferers have to particular sorts of biotoxins. The situation here is the same one that some people have to (say) gluten or latex or peanuts: even a tiny bit of exposure can provoke a dramatic response. For instance, back when I was hyperreactive, even 15 seconds in a bad building would contaminate my hair and clothing enough to make me totally sick until I showered and changed clothes. That being the case, reducing exposures to half or 1/10 or even 1/10000 of the original amount might not be enough to make people feel much better. It’s that last little bit that makes all the difference, it seems

    The mechanism for the hyperreactivity has yet to be determined. I tend to think that (per Erik Johnson’s suggestion) it’s a result of a lack of specific critical anti-inflammatory cytokines, but it’s possible that it’s a mast cell reaction. Research is needed!

    Regardless of the mechanism, scrupulous avoidance appears to be by far the most effective short-term method of getting the reaction under control and reclaiming a bit of a normal life, though of course it’s easier said than done. (Note that mast cell specialists agree that trigger avoidance is critical when triggers can be identified, with drugs and other treatments considered supportive of avoidance activities at most.)

    From what I can see, there are two reasons to try to get the reaction under control. 1) Feel better in the short-term. 2) Get the body to start detoxing. (In general, when the system is experiencing a reaction, detox often appears to turn off.) Case studies suggest that people can feel remarkably better in the short-term if exposures are low enough, and also that with a lot of avoidance/detox over time, the amount of new toxin exposures that can be tolerated without triggering a reaction can go up.

    Unfortunately, it’s a real challenge to get levels low enough for those effects to happen (and more challenging every day, as the world becomes more toxic). Belongings contaminated in a moldy house will invariably be enough to trigger reactions in people who have become sensitized, for instance.

    Even if people can’t get levels down to the point that the acute reaction turns off though, I think it’s still worth decreasing substantial exposures in whatever ways (including moving from environments where indoor or outdoor toxin levels are high). Lower levels of exposures means less new toxic accumulation in the body, thus likely decreasing declines in health over time. And with less stress on the system, the patient may be more able to benefit from other treatments regardless of what they might be. (For instance, the inconsistency in response to treatments like Ampligen and Rituximab possibly could be related to levels of external toxic exposures– it would be interesting to see researchers include the ERMI as a variable predicting response.)

    So regardless of how “extreme” people feel like going, I would like to suggest that testing for problematic molds in the environment and (if a place is particularly bad) moving somewhere else may be a very good idea. Even if it doesn’t lead to big immediate health improvements, it still may be worthwhile!

    • R

      Mast cells can be triggered by complement or by antigen, possibly by toxin since chemicals can trigger. Mast cells can cause almost every symptom I have heard others with mold illness express they have from neuro and gut inflammation, to intense pain and fatigue and even those “burning sensations.” Mast cells trigger can a cytokine response as well. As one of my doctors suggested, perhaps we have different immune responses for different individuals. I would personally suspect this to be somewhat if not entirely based on genetics that go beyond the Shoemaker paradigm. Our family is inclined to dysautonomias, connective tissue disorders and most likely mast cell disorders of some sort.

  • Meg

    “Almost a quarter of the normal population is genetically susceptible to chronic mold illness.”

    Has anyone looked at ME and CFS diagnosed patients to see what percentage is genetically susceptible? Also Lyme patients. Are the percentages higher in us than in the “normal” population? Has anyone looked at this in a statistically significant way? Knowing if in fact this percentage is higher (rather than guessing that it is) would add a lot to this conversation.

    • http://www.facebook.com/profile.php?id=1603672188 Lisa Petrison

      This does seem like a no-brainer, doesn’t it? The problem here is that Shoemaker has yet to get the evidence that those genotypes are “susceptible” to biotoxins into the peer-reviewed literature at all. If he would do that, then I suspect that some CFS doctors could be persuaded to test their own patients for those genotypes, to see if they corresponded.

      What Shoemaker calls the “Lyme susceptible genotype” is associated with M.S., according to a few peer-reviewed studies. Anecdotally (with several dozen cases), my own observation is that every single severely ill CFS patient that I’ve seen get tested has one of the following genotypes: 1) A multisusceptible gene (or a multisusceptible gene plus another “problematic” gene), 2) Lyme susceptible, 3) Mold Susceptible + Low MSH. (A few patients I’ve seen with moderate CFS have had just low MSH genes.)

      According to Shoemaker, these combinations would be substantially less than 10% of the total population. However, without his studies confirming this published in the literature, we’re putting a lot of trust in him with regard to whether these genes are associated with biotoxin susceptibility at all. So the ball is really in his court to get that data published, if we are to move forward with the science. I’m sympathetic to him here since funds are limited, but this seems to be of critical importance for all of us.