Practicing Mould Avoidance

Last updated August 2013 

How to Practice Mould Avoidance as Outlined by Erik Johnson

"Mould Warriors" are those who advocate mould avoidance as a treatment for MCS and CFS (among other conditions). 
Richie Shoemaker, Lisa Petrison and Erik Johnson are a few of the biggest proponents. Lisa an Erik have been advocates for "extreme mould avoidance," a system that has cured them both of CFS. 


Toxic Mould Via www.ciriscience.org
I believe, like Erik, that sensitivity to mycotoxins (toxins from mould) is MCS. My definition however is much broader and I advocate for extreme VOC avoidance, not just mould toxin avoidance. I am proposing that his protocol can be used by MCS patients for any and all chemical substances that you react to. I have noticed, like many MCS patients, that when you get out of a chemical-filled environment you go through the period of increased sensitivity (like Erik explains with mould sensitivity). Once you become very aware of what is bothering you, it becomes easier to avoid toxins, and in turn avoid many of the symptoms of CFS. After some time the body will heal and you can recover from this hypersensitive state. Many have recovered from CFS completely.

If you have CFS and you do not perceive any sensitivities to mould or other environmental toxins I would suggest that you have become too acclimatized to them and should at the very least conduct a short experiment by finding
temporary safe accommodation in the cleanest environment you can afford. (For inspiration on others who have improved from moving to a cleaner environment check out The Locations Effect). Erik talks about a "Mobile Environmental Control Unit" which is a "safe house" trailer or RV totally devoid of mould. I have written a post on mobile safe homes and will be writing in much more detail how to procure a totally mould-free, VOC-free trailer.

Here I will summarise Erik Johnson's mould avoidance protocol based on the document "Role of Toxic Mold in CFS", which is 
available here. I will do my best to stay true to the text and present his version of the protocol. (Keep in mind that I diverge on the point of which toxins we should avoid - I think we should try to avoid all environmental toxins - not just mould toxins.)


Mould Avoidance, According to Erik Johnson


Acute Symptoms to Mould Toxins Include:
  • Anxiety and depression 
  • Vague feelings of unease 
  • Heart palpitations; sense of cardio-distress
  • Feeling like you can't breath
  • Skin hypoperfusion 
  • "Sensation of extreme lethargy that inexplicably abates upon rising."
  • A burning sensation in the nose

Locating the Toxins and Identifying Your Personal Response to Them:

  • Keep in mind mycotoxins do not necessarily have an odour, and not all mould is toxic.
  • To figure out your reaction:  go into a contaminated place and note the symptoms, then go through a decontamination protocol and enter your safe house or pristine location (outdoors), and compare how you feel. (More on decontamination protocol below).
  • To fine tune your ability to detect contaminated objects: take an object you know has been in a place contaminated with toxic mould, take it out to a really clean location and notice how you react to that object. (Do not bring it into your living space, test it outside).
  • Note that reactions to objects are cumulative. It is not necessarily just the one that tipped you over the edge that is the culprit.
  • Your own specific reaction is your best guide to figuring out the source of the the toxins.
  • Anxiety and depression symptoms are better indicators than "physical" reactions.
  • Insomnia is another really good indicator of exposure. 
  • Remember that symptoms can be delayed for about 4 hours.
  • To test a house for mycotoxins, you have to sleep there for a number of nights. Changes in the wind and weather can realease toxins or bring in different toxins through the air.
  • Note how changes in the weather and EMFs can affect the mould spores and toxicity of a place.

How to Practice Mould Avoidance:

Setting up shop:
  • Put everything in storage (bringing your old possessions to a new safe house will reverse all your other efforts).
  • Buy a safe trailer or tent which will be your new temporary home.
  • Find a clean location. Somewhere as "pristine" as possible. The desert, the coast, islands etc. 
  • Asses every item before bringing it in. If not acceptable - wash, leave in sun and assess again. Some items hold on to toxins while others can easily be washed. 
  • Move your trailer as quickly as possible to another location if you detect that the outdoor air contains toxins - if the place where you sleep is being contaminated by outdoor toxins you must move; having a safe place to sleep is of utmost importance.
Decontamination:
  • If you go through an area contaminated with mould, shower and change your clothes. (You may be showering up to 10x per day).
  • Leave contaminated clothes/items in an isolation area, preferably outside, bag them to be cleaned and re-assessed later. Don't bring anything contaminated into your safe house, especially the room where you sleep.
  • Bag clothes, shower and change clothes as soon as you can after any exposure in the beginning. (until you have significantly improved).
  • Thoroughly washing your hair is important after being somewhere significantly toxic.
  • Shower before sleeping and make sure nothing contaminated comes near your sleeping area. 
  • Store or throw away anything you cannot remove toxins from with washing; remember that some items absorb the toxins and they cannot be washed off.
Upkeep:
  • It's difficult to avoid contaminating a mattress or pillow so a camping cot is recommented instead. A washable sleeping pad and blankets can be used for padding. A rolled-up towel can be used as a pillow. If you feel that any of your bedding has been contaminated, wash it, and  put it out in the sun if the air is clean.
  • After washing it is usually best to dry bedding and clothes inside the safe house. Keep extras bagged.
  • In the daytime cover bedding with a plastic cover (a poncho even).
  • Having layers of bedding is handy in that you can wash and replace top layers frequently, as they become contaminated easily.
  • New furniture (or other items) need to be tested for your own sensitivities before bringing into the safe house. Many warehouses are mouldy and can contaminate items.
  • Electronic devices are fine as long as kept in the safe zone. Once they pick up toxins they cannot be decontaminated.

Stages of Mould Avoidance:
  1. Prior to starting avoidance the body masks acute symptoms making it difficult to pinpoint exactly the source of the toxins. The patient usually gets incredibly sick before finding the impetus to move and start mould avoidance. (You don't have to wait until you hit rock bottom though!)
  2. The safe trailer and pristine location together form a baseline.
  3. Out in a clean environment the patient becomes much more sensitive and attuned to toxins and gains the ability to identify their source and therefore avoid them (here is where it may seem that it is getting worse before it gets better).
  4. After 6 months or more of following the protocol and detoxing, the person starts to recover and can then build up tolerance again.

Building up Tolerance/Re-integration:
  • After following a strict protocol of avoidance and decontamination Erik was able to build up his tolerance to toxins. Erik was then able to go back to work in a place that had been problematic before. He can handle doses of toxins as long as he keeps the exposure within his limits.
  • Continueing to have a safe, clean place to sleep is important as our bodies do significant healing at night.
  • Items can be brought back out of storage. The worst items offgassed after 5 years (if the storage facility was not mouldy).
  • Re-introduce items or problematic locations slowly so that you can stay within your tolerance level.


Erik adds that: "this strategy applies regardless of whether the nature of the chemical injury is - either mold or some other chemical, or perhaps even both." I agree; I think that this strategy can be used for sensitivities to all types of chemicals for those with MCS, CFS and Fibromyalgia. While this strategy may seem extreme at first, imagine the benefits of regaining your health after 6 months to one year! 
I wish you luck in your mould-free and chemical-free healing journey. 

To read more about Dr. Shoemaker's mould detox protocol, get ahold of his book: Surviving Mold :Life in the Era of Dangerous Buildings.

If you have more questions about practicing mould avoidance, you can read Q&As here and ask your own question of Lisa and others who have recovered with this method. 

To read more about Erik's recovery check out this book about him: Back from the Edge

11 comments:

  1. Erik may be recovered, but after meeting Lisa, I would not say she appears to be recovered from ME-CFS even though she claims to be. Needing to sleep late, multiple digestive issues, detox symptoms, mood shifts.... these are all things I observed and are typical of ME-CFS. Improvement, yes. Cure, no.

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    Replies
    1. Hi Janis, Yes, I think it is a good idea to point out that there is no miracle cure. I know various people who have recovered from a variety of methods. I would define recovered as someone that is able to return to full time work and maintain a social life. It's a vague definition but I think we would all be pretty happy to get back to that!

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    2. I was often able to work full time and had an active social life when I lived in my house in a moldy community. But I had many relapses, and PEM from aerobic activity (although I could do yoga for 8 hours a day). Each time I went into remission, I thought I was on the road to full recovery, but I never made it to 100%. What I find doing mold avoidance is that I have a lot more control and never get slammed to the point that I go into relapse. But it's a miserable life for now. I know a few others doing this and they've been at it more than 6 months. Probably takes 4-5 years to get to the point where you can tolerate mold again.

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    3. wow, 4-5 years! OK ....wow....good to know. Thanks for sharing. I am just starting out.

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    "Subject: [sickbuildings] Joe Kleins Website
    From: "erik_johnson_
    Date: Thu, 25 Apr 2002 15:59:20 -0000
    To: sickbuildings@yahoogroups.com
    "It's absolutely awesome to hear someone else describe the ability of
    hair to maintain and transport the mold. I found that wool garments
    are no different.
    I noticed that some contaminated places give me a huge "hit" but that
    I could walk away and recover without decontamination. Other places
    might hit me less, but I would carry the "reaction" with me. This led
    me to believe that the neurotoxic reaction was to aerosolized
    mycotoxins and not necessarily inhalation of spores.
    I tested this by placing a contaminated article in HEPA filters and
    taking it to my "clean" place. I put it under six layers of blankets
    and slept on it. I got the usual reaction and removed the article but
    went back to sleep on the same blankets. The reaction was gone.
    This convinced me that that spores had not penetrated the filter or
    blankets and that the toxic gas was truly my primary irritant.
    This was confirmed by Dr Marinkovich who told me that a housing
    project in Sweden had recently been identified with sick inhabitants
    but no spores could be found. Only when the walls were opened up were
    the colonies found, but they were so tightly sealed in the walls that
    only the toxic gas could escape.
    Many places that give me mold hits are strictly VOC hits and not
    spores. When I leave these areas I do not have to bother with
    decontamination.
    -Erik"

    ReplyDelete
  6. I'm wondering about the step under "Upkeep" that says to cover your newly washed bedding with a plastic cover. Is that to shield it from airborne spores? In my experience I have found plastic doesn't allow anything to breathe and tends to grow mold due to lack of air. Plastic is toxic anyway. Let me know what the philosophy is behind this. I might be misunderstanding. Thanks for the tips.

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