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Extreme Avoidance

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, May 11, 2013.

  1. slayadragon

    slayadragon Senior Member

    An increasing number of people have expressed interest to me about pursuing mold avoidance in the way that I have pursued it and that others on this board and in CFS community have pursued it.

    In order to help people to understand what is involved, I have put together a collection of writings by Erik Johnson (brief bio below), dating from 2000 to 2010. An additional collection with more recent writings will be available soon.

    The collection of Erik's writings is quite long (900+ pages), and so I suggest using the table of contents. For those just interested in understanding the basics of how to do avoidance, I suggest starting on P. 114.

    The first post on the thread includes links to a few of Erik's other writings. The second post on the thread has a link to the collection.




    Erik Johnson became aware of the negative effects of toxic mold on his health in the early 1970s as a student at Truckee High School in the Lake Tahoe area of California. He later became very severely ill with the illness that went on to be named Chronic Fatigue Syndrome in Incline Village in 1985 (and was one of the original cohort patients treated by Dr. Daniel Peterson and Dr. Paul Cheney). He recovered part of his health as a result of mold avoidance in the late 1980s; in 1998, he developed what he calls "Extreme Mold Avoidance" and has been functionally recovered (including working full-time and exercising vigorously on a regular basis) ever since. Since 2000, he has spent the majority of his free time helping scientists to understand this phenomenon and educating CFS and mold illness patients about this disease. He lives in Reno.
  2. maddietod

    maddietod Senior Member

    East Coast, USA
    Lisa, is there a way to do a test run to see if mold is a problem? Like moving to [what kind of housing], [where], [for how long]?
  3. slayadragon

    slayadragon Senior Member

    A number of people who suspected that their living environments were problematic have done a test run of going tent camping in a place that is known to be good, such as Death Valley. The goal is both to feel better while on the "sabbatical," and also to get unmasked enough that it will be clear upon returning home how much of an effect the toxins are having.

    For instance, Jeri Kurre (Replies #3 and 4 on this thread) started out this way. She got to almost 100% wellness while still in Death Valley. After she returned home to WV and found that her residence was particularly problematic for her, she moved to a different place that felt good to her and replaced her possessions with things that did not bother her. She is continuing to do well.

    However, not everyone can pull off a camping trip for two weeks to the remote desert. For those who would like to experiment with regard to whether environment matters to them in a way that is less expensive and effortful, I suggest starting out by doing some experiments visiting different environments and observing whether symptoms shift.

    This is no different than the kind of testing that CFS patients do all the time, where they try a food or take a pill and then try to figure out how it's affected them. Most people don't think to do this with environmental changes, even when the effects are pretty big. So part of it is just to start observing.

    When doing experiments in different locations, there are three factors to consider with regard to toxicity.

    1. Building.

    This is the one everybody thinks of first, and unfortunately it's hard to predict whether a building is going to be good based on any characteristics. It does seem to be the case that big fancy hotels with centralized HVAC systems tend to be pretty bad, so I wouldn't do the experiment in them. Based on my own experiences meeting lots of people with CFS and related diseases, I am going to posit that people with "mystery disease" very frequently are living in bad environments and suggest that visiting healthy friends/relatives may have a better likelihood of providing a good environment. In general, just trying out different environments for a few days and considering whether and how symptoms change may be a good start.

    2. Outdoor Air

    Biotoxins of various kinds (such as mold and cyanobacteria) can be present in the outdoor air as well as indoors. Some of these biotoxins are really problematic. It's my strong belief that there are certain places that are historical CFS cluster spots and that people who have the disease tend to be especially sick in those places. (A few that I feel confident that I would not want to visit for an avoidance sabbatical: Dallas, Ann Arbor, Truckee/Tahoe, Sacramento, Berkeley/Richmond/Oakland, Fresno, Seattle.) Other locations seem to be feel pretty uniformly good for people with this disease. So I suggest looking at the Locations Effect board that Paul Beith and I have put together, to consider spots that might be worth trying out or avoiding. (If anyone has felt particularly good or particularly bad in a place, please enter your comments!)

    3. Possessions

    If people are living in a particularly bad place and bring their clothing and possessions with them elsewhere, this can be enough to keep them totally sick even if they are staying in a good building with good outdoor air. I thus suggest buying or borrowing all new possessions for the experiments. As a general suggestion, LL Bean's clothing and camping gear always has felt good to me and to a number of people experienced at avoidance, and the fact that it comes through the mail means that it can be kept unopened until people get to their destination.

    In general, if people are going to pursue avoidance in this way, they probably shouldn't expect to go from almost bedridden to miraculously cured within a day or two. It's hard to get really clear, plus the body may need time to get rid of some of the toxins and address some of the most egregious infections. But the difference may be more noticeable than you might think, if you just start paying attention.

    Best, Lisa


    I remember trying to think of how best to describe this.

    What I came up with is that it is like trying to make your way through a maze whose walls are lined with barbed wire, razor blades and shards of broken glass... while blindfolded.

    You pick a direction, proceed slowly and cautiously, and when you begin to feel something sharp... just as slowly, back away and try another direction.

    The goal is to shred yourself as little as possible as you wind your way through the maze.

    You start out with a tent and a sleeping bag and if they hurt you, back away and try different ones.

    -Erik (2009, Locations)
    lisann and maddietod like this.
  4. slayadragon

    slayadragon Senior Member

    maddietod and merylg like this.
  5. Sparrowhawk

    Sparrowhawk Senior Member

    West Coast USA
    I just read your book on Erik, slayadragon, fascinating stuff. Thanks for your efforts to put all that together in an easy to absorb format.
    Christopher and slayadragon like this.

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