|Toxic Mould Via www.ciriscience.org|
"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 and Erik have been advocates for "extreme mould avoidance," a system that has cured them both of CFS. I will outline what is involved in this treatment and then go in to how to do a test run to see if mould is affecting your health.
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 safe trailers.
Here I will summarise Erik Johnson's mould avoidance protocol based on the document "Role of Toxic Mold in CFS", which is available here. A new guide that is much more concise is now available: A Beginner's Guide to Mold Avoidance: Techniques Used by Hundreds of Chronic Multisystem Illness Sufferers to Improve Their Health.
Mould Avoidance, According to Erik Johnson
- 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 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 release 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.
- Assess every item before bringing it in. If not acceptable - wash, leave in the 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.
- 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.
- It's difficult to avoid contaminating a mattress or pillow so a camping cot is recommended 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:
- 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!)
- The safe trailer and pristine location together form a baseline.
- 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).
- After 6 months or more of following the protocol and detoxing, the person starts to recover and can then build up their 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.
- Continuing 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.
For a guide to mould avoidance get a copy of Lisa and Erik's new book" A Beginner's Guide to Mold Avoidance: Techniques Used by Hundreds of Chronic Multisystem Illness Sufferers to Improve Their Health
To read more about Dr. Shoemaker's mould detox protocol, see: Surviving Mold :Life in the Era of Dangerous Buildings.
If you have more questions about practicing mould avoidance, you can read Q&As here.
Almost everyone I know with CFS/fibro has felt better in a "good location". Unless they have not traveled, I have yet to find someone that once you ask, will start to tell you that they felt "80% better in the Dominican" or had most symptoms go away while camping in a national park or while vacationing in Cape Verde or Aruba. There are many more stories on the Locations Effect page (links below) from people who have recovered from CFS using this method including Lisa Petrison, Erik Johnson and I would even include Dave Asprey in this list.
Here are the steps necessary to test this treatment method out for yourself:
Step 1. Find a good location
Using the Locations Effect Facebook page, Locations Board and suggestions from others who have recovered from CFS, find a good area. The key aspect here is the outdoor air quality. People have felt remarkably better in places that are exceptionally pristine, these might be in the mountains, tropical coastal areas or the desert. First pick a town/area based on recommendations and proximity to you, and then look at lodging.
|Mercy Hot Springs, Firebaugh, CA|
Lisa Petrison recommends the accommodation at Mercy Hot Springs (CA) and KOA. Here is a detailed post on what you need to know about getting clear at Mercy. The KOA in Moab UT is one that is recommended.
Lisa mentions that the KOA Cabins are log cabin construction with no plumbing. Just check in with how recently they have treated the wood. Note that she has found some of their bathrooms are mouldy. It's important to pick a KOA location in an area where the outside air is good.
|Ghost Ranch NM|
Other good locations in the US include: Ghost Ranch (Abiquiu) (NM); Black Hills area (SD); Palm Springs/Joshua Tree, Death Valley; Las Vegas, (Nevada) (Here is the full list with descriptions). St George, UT is no longer good, but there are excellent reports from Vally of Fire State Park, NV.
Another HealClick member saw a total remission of symptoms at Seventh Mountain, Oregon (They use non-toxic cleaning and bath products).
Here is another review and great discussion of good US cities and towns such as: Grand Junction & Durango (CO); Socorro & Taos (NM); Moab & Cedar City (UT); Helena (MT); Wichita (KS); Hollister (CA). (Join HealClick to see the full discussion).
|Boa Vista Island, Cape Verde, Africa|
On the Locations Effect Facebook page you can find many good reports for the Caribbean (Yucatan, (Mexico), Aruba, etc.) as well as other tropical islands such as The Canary Islands (Spain, off the coast of Africa) and Cape Verde (Africa, off the coast of Senegal).
I have also heard very good reports from the Dominican, Cuba, Puri (India), and Mt. Kailash, Tibet.
In Canada I have heard that Forillon Park (QC) is good for camping. I recommend OUR Ecovillage (BC) both for camping and many of their cob buildings are good for healing (I had an immediate improvement there and did a lot of recovering). In BC here are some options for natural home rentals where people have healed:
North Vancouver - I know someone that did a lot of healing at this rental. The house was made with eco materials. Ask about cleaning products.
Duncan (Vancouver Island) - This off the grid ecohome looks great. It is in logging company land so there could be concerns over spraying herbicides in the area, but this doesn't happen often. I have done a lot of healing in this area.
If you are coming from a bad place the first step does not need to be a perfect - if the outside air is reported to be good by multiple avoiders then any building that is not mouldy or new will likely be better than nothing (i.e. better than not trying at all). More tips on finding accommodation below.
Step 2: Decide if you want to stay in a tent, trailer or regular lodging
A tent is less risky as you have way more control over the environment you are sleeping in (but is difficult to offgas). A tent can be hard for someone who is extremely sensitive to temperature like I am. I have a very narrow range that I can tolerate so sleeping in a tent is almost impossible for me.
Finding lodging that is chemical/scent/mould-free is trickier, and everyone is different in their sensitivities so even a good "recommendation" is tricky. Places also may have been contaminated since the recommendation was made.
See these articles on camping: EI Wellspring Safer Camping and Safer Camping Equipment, and this 3-part series by Re|shelter: Part 1, Part 2 & 3.
Mercy Hot Springs has Airstreams for rent. Having a cargo trailer with no wood, offgassed Camplite or offgassed fibreglass trailer could also provide good baseline homes. Here is my post on trailer options.
c) Indoor lodging
|Seventh Mountain uses natural cleaning products|
Go with somewhere recommended by someone who has recovered there. If that is not possible, find somewhere that used natural building materials, and uses natural unscented and chemical-free cleaning products in an AREA that has been recommended.
Ask about recent renovations, mould/water damage, and cleaning products. Types of buildings that can be good are natural buildings (i.e. adobe), and concrete high rises found in tropical countries.
|Top floor of concrete building w/ tile floor usually good if ~5yo|
You ideally want tile or stone flooring. Definitely not carpet. Anything about 5 years old is usually best. Old buildings (more than 10 years) are likely not good unless they are made out of stone (concrete also is good over 10 years).
A simple wood structure in a tropical area that is new would be good (i.e. treehouses! wooden yurts, beach huts) (if something is made of only wood than there is nothing to offgas but it will go mouldy with time, so the newer the better).
Step 3. Prepare the items you will take with you
Note: This is Avoidance procedures from those who have recovered from CFS, MCS and CIRS and I am presenting the most extreme, or most thorough, version of this protocol which should be followed if you are very sick. (If you are not very sick you could try a moderate version).
Don't take anything with you other than specially prepared clothing and toiletries below. (Bringing your things with you will reverse your efforts!). Other necessary items like medication can be isolated. *Note: if you are coming from somewhere that you know if already pretty good or you don't have the energy to isolate all your stuff an easier version of this experiment is just to buy some new clothes keep them bagged up until you arrive, and bring only absolute essentials like medication. I think that is certainly better than not trying, but you will get a really good sense of how location affects you if you don't bring your belongings.
Bring two new outfits: Organic cotton clothing is best in my experience, I recommend this store to buy leggings and t-shirts from (is cheap but not great quality). When they arrive in the mail put them in large ziplock bags.
Shoes: keep outside in your new location. You might need to buy shoes that will not go mouldy/mildewy when left outside like rubber boots with no lining or these cute rubber shoes which I have, and love.
b) Chemical-free/scent-free toiletries
Order the following items online:
- Unscented Soap
- Fragrance-Free Shampoo (shampoo can double as a body soap too)
- Organic Argan Oil if a moisturiser if needed (face, body and hair)
- Laundry Soap
- Exfoliating Gloves (important to have an exfoliant to really detox the skin)
- DivaCup if needed
- Toothpaste & floss (and a toothbrush)
- Dish Soap (I find this dish soap also works well as laundry soap and body soap in a pinch)
And yes these are all products I have tested. This is not the time to try soaps or shampoos with essential oils! (you may become sensitive once in the clean location) and definitely not the time to use chemical-filled versions.
You can also order any supplements & OTC medications you need to take with your from Vitacost (10$ off with this link!) Vitacost just became super affordable for Canadians (flat rate 10$ shipping even on a big box of stuff! And their products are MUCH cheaper than ones bought in Canada).
When the items arrive in the mail use the same sequestering procedure as with clothes. I have found the boxes from Vitacost to be scent-free, so you could leave the items in the box and wrap the box in foil, or garbage bag.
Also, bring extra plastic bags for containing clothes.
Clean out some glass containers to put your medication in. Or just leave as is and store in the bathroom in your new location as opposed to right next to you while you sleep!
d) Electronics, Books, Money etc
Electronics (computers and cell phones) and books should not be brought unless you can keep them in your car. Electronics and books cannot be decontaminated except with loads of time (years). Use sparingly if you must use them because even using them outside could trigger a reaction. Do not bring makeup, jewelry or camera or an iPod for the same reason.
If you need ear plugs or eye mask (that eye mask needs some time to offgas) you can also order these online and use the same procedure as with clothes.
Credit card/bank card/cash and IDs: bring and store in zip locks or keep outside.
If you need any other electronics (a white noise machine, heating blanket, Kindle) buy through the mail and isolate like the other things. New electronics, esp heating blankets are quite toxic when new so better if you can go without. This is not the time to spend money on all new things like electronics because this test run might be an intermediate step to finding a cleaner more permanent location and that is the time you will want new things.
Bring your glasses and keep them in the washroom at night unless you are overdue for a new pair.
e) Anything else buy at your new destination such as more clothing, Advil etc.. Do not buy anything made of toxic materials until you have gotten clear for a while (i.e. books, electronics). Note: some things obviously are not as urgent and can be ordered online once you arrive (like some supplements).
Step 4. the Decon Procedure for Body and Clothing
When you arrive at your accommodation immediately bag your clothes in a plastic or aluminum bag. Get in the shower, scrub down with your scrubber and specially bought soap and shampoo and then put on your new clothes. Store your "travel clothes" in another location, i.e. your car or in a plastic bag outside.
If you can, wash the bedding when you arrive or bring your own and request no bedding.
I get my bedding from Coyuchi which is absolutely fantastic and doesn't need to be decontaminated before use. If you want to bring bedding and towels I would go with Coyuchi so that you know it is chemical-free.
Wash clothes by hand with non-toxic, scent-free soap (above). Note Borax is no longer considered safe to use in laundry for decon. Hang to dry in your safe space or outdoors. The sun helps to remove mould from clothing.
When you come inside from a car or another building: shower, bag clothes, and put clean clothes on. Then wash clothes as soon as you possibly can.
Step 5. Diet
It would be a good idea to follow a low-mycotoxin diet as outlined by Dave Asprey if you can. Especially important is low mycotoxin coffee and chocolate (if you must!) from Dave's store Upgraded Self - Shop Bulletproof Upgraded Coffee at UpgradedSelf.com.
Another note is that supplements might become more noticeably helpful when in a clean location so don't ditch them completely.
A few notes:
- I see improvement in symptoms after one day of being in a good location. Certainly one week is minimum for your test run and I think one month is better.
- After a few weeks you will have a heightened sense of smell and will be able to detect contaminated objects much more easily. Note that some moulds do not have a scent.
- EMFs in a location are an important factor as well as pollution, chemicals and mould.
- If you have specific questions for Lisa Petrison and others who have recovered, see the fantastic Q&A page Avoiding Mold.