The Mold Avoider’s Dilemma: What Should I Do About My Stuff?

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October 3, 2015

By Lisa Petrison & Erik Johnson

Of the many difficulties that new mold illness sufferers face, perhaps none is as fraught with confusion and frustration as the issue of what to do with their current stuff.

Anyone who ventures into the online mold community will immediately encounter many individuals who will insist that all mold victims need to get rid of all their possessions if they want to have any chance of moving toward wellness.

But not all individuals pursuing mold avoidance (even “tent-in-the-desert” mold avoidance) state that getting rid of everything was necessary for them to move strongly toward recovery.

Some state that they were able to keep many or almost all of their possessions (often subsequent to doing some basic cleaning of them).

Mold illness physicians seem equally divided on this topic. For instance, when recently we asked members of the Mold Avoiders group what advice they had received from their mold doctors on this topic, here were some of the responses.

“She said not to bring anything with us.”

“He said to wash everything in borax or dry clean.”

“He didn’t give any directions about cross-contamination at all.”

“She said clothes yes, also ceramic and glass, but nothing else.”

“She directed me to the Paradigm Change website.”

“After I brought it up, he suggested washing my clothes in vinegar and baking soda. Another mold doctor suggested ammonia.”

“He said Stachybotrys and Chaetomium could not be remediated and so we could bring nothing from our house.”

“He said clothes and non-porous items were okay, just wash them. He also said that the washer and dryer would be okay.”

“He said never to go into the house at all, even to get a few precious things.”

“He said no paper, fabric, furniture, mattresses, electronics, but that if you can wash it (such as blankets and clothing) that it would be okay. Also he said glass, metal, leather furniture, and wood furniture can be saved.”

“She gently suggested we leave everything behind, like the worst of the cases in Surviving Mold, at least at first.”

“She told me to get rid of everything I owned (and never mentioned any of the ramifications of that).”

“He just said, oh, try to clean up your house the best you can but no mention of cross-contamination.”

“He told me I had to leave everything because of the level of my reactions and my air tests.”

“She said I should take things only if they weren’t bothering me and then suggested I try ozone.”

“He said we could clean everything and gave us an instruction sheet.”

“She said to TAKE NOTHING.”

 

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Although books and stuffed animals can have significant sentimental value, the fact that they cannot be cleaned effectively from mold spores and spore fragments makes them among the most dangerous items to bring to a new environment.

 

A DIFFICULT PROBLEM

With experienced doctors offering such widely divergent advice, it is hard for anyone struggling with this issue to decide what to do.

That especially is the case since the results of all of these varying courses of action have been reported to be inconsistent across mold illness sufferers.

As a result, while some patients say that they wish that their doctors had warned them more vigorously about the dangers of keeping contaminated possessions, others say they wonder if it was really necessary to be as extreme as they were in terms of getting rid of everything.

It thus seems that this is a complex and challenging topic, upon which even the most well-meaning and knowledgeable mold specialists have yet to reach consensus.

The goal of this article is to discuss the major issues related to this topic, including some of the various approaches that have been suggested for dealing with it.

Hopefully this will provide enough background that those who need to make these decisions will be able to do so in an informed and reasonable way appropriate to their own particular situations.

 

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Getting as clear as possible while sleeping has been reported to be especially helpful for detoxification and healing, and patients usually spend at least 1/3 of their time (often more) in bed. Thus, being especially cautious about cross-contamination with regard to anything associated with sleep may be a good idea.

 

DUST VERSUS TOXINS

One important consideration is the question of whether we are talking about “poisonous dust” (dormant spores and spore fragments of the mold itself) or “mycotoxins” (the chemicals that were made by the mold).

Toxic mold spores that are released from the colony into the environment are microscopic in size.

They are comprised of protein and are saturated with chemical mycotoxins.

These dormant spores disintegrate into spore fragments, which are even smaller and even more toxic than the whole spores.

These spores and spore fragments mix with other dust and then get blown or carried all over the house, potentially cross-contaminating all the belongings in the environment.

Some important takeaways here are:  1) items can be contaminated even if no mold has ever grown on them and  2) killing all the mold in the environment does not solve the existing toxicity problem.

Insofar as spores and spore fragments are assumed to be the only dangerous substances in an environment, then the concept of dealing with cross-contamination is pretty straightforward.

Basically, the goal becomes to get rid of all the dust particles (e.g. by washing, wiping or vacuuming them away).

In practice, because these spore fragments are so small, their removal is often a little more difficult than it would at first seem.

Just because an item seems dust-free does not mean that there is not dust hiding in the crevices of it. And even if an item of clothing has been soaked in water, the potential exists for spore fragments to be embedded so deeply in the cloth that they fail to be washed away.

An even more important – though infrequently discussed – question is whether the toxins from the spores are capable of transferring themselves to other objects.

If that indeed is the case, and if the bond between the toxin and the object is a strong one, then the remediation problem has the potential of becoming infinitely more difficult since even thorough washing in water may not result in the item becoming free of dangerous toxicity.

Although we have not seen any peer-reviewed studies demonstrating that mycotoxins indeed can transfer themselves from spores to objects, at least some experts do seem to think this can be the case. For instance, toxicologist Jack Thrasher, Ph.D., writes:

 

The toxins produced by mold are basically free radicals, i.e. they have reactive oxygen radicals that bind to fabrics and can be released with time. Also, not only Stachybotrys, but other dangerous molds release fine particles as well as larger particles, e.g. spores. The fine particles (less than 1 micron) permeate fabrics and are not readily removed. In addition, the mold spores bind to fabrics and can lead to cross-contamination of the new environment.

 

Insofar as toxins are capable of transferring from the spores and spore fragments to other surfaces to a large enough extent to have a negative effect on mold-sensitized individuals, this would have substantial implications not just for our assumptions about possessions but also about the extent to which buildings should reasonably be expected to be remediated.

Currently, the success of remediation efforts is almost always gauged by mold professionals and mold doctors based on how well the building rates on a mold test such as the ERMI (which looks for material from spores rather than toxins).

If spores and spore fragments are all that matter, that makes fine sense.

On the other hand, if toxins are capable of transferring from spores and spore fragments to the walls and other surfaces of a building, then cleaning up the building so that the poison dust (aka spores and spore fragments) is at a very low level may not result in sensitized people being able to live successfully in the building.

Rather, the poison that is stuck to the surfaces of the building might be sufficient to keep those individuals sick.

(And since mycotoxins are some of the smallest particles in existence, even painting over or otherwise attempting to seal surfaces with chemicals might not be sufficient to resolve the problem either.)

Similarly, if mold toxins are capable of sticking to objects in quantities high enough to have a negative effect on mold-injured individuals, then conceivably those objects will not be able to be used by these people without negative consequences even if all the spores and spore fragments have been removed from them.

A point that seems to us relevant is that the popular binder cholestyramine – which is comprised of tiny balls of plastic – uses an electrostatic charge to stick tightly enough to mycotoxins in the body to efficiently escort them out through the intestinal tract.

If mycotoxins stick that well to plastic inside the body, then it seems to us that (as we in fact have observed happening) they should be able to stick particularly well to plastic objects in the external environment as well.

And perhaps also stick to other objects.

Considering that large numbers of sensitized individuals have reported being very negatively affected both by washed possessions and by formerly moldy buildings that have been remediated to the point of having very low ERMI scores, the likelihood that mycotoxins do transfer to surfaces of other objects seems to us pretty high.

Some serious scientific study into this topic therefore seems warranted.

 

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Computers that have been exposed to the substance commonly referred to as “Hell Toxin” have the potential of cross-contaminating everything else in the environment when the fan goes on. Caution is suggested.

 

TOXIN STRENGTH

Another important consideration in deciding what to do about possessions is toxin strength.

Any attempt to create one-size-fits-all instructions with regard to what to do about possessions is implicitly taking the position that all mold toxins that individuals might be dealing with are exactly the same in terms of their effects.

That, of course, is patently untrue. Molds are capable of making a wide variety of toxins, some of which are conventionally acknowledged to be much more damaging in small quantities than others.

In addition, particular toxic mold species such as Stachybotrys are conventionally acknowledged as being capable of making a variety of mycotoxins, some of which are much worse than others, and even of being non-toxic in certain cases.

This means that any environmental mold testing focusing on spores (such as the ERMI or air testing) should be viewed as only a proxy measure for how toxic an environment is likely to be, rather than as conclusive evidence about how toxic the environment actually is.

In addition, it is important to realize that the field of mold toxicity in general is a a very new one.

The first published study (on the effects of aflatoxins on turkeys) appeared in the literature only a little more than 50 years ago. Newly discovered mycotoxins (such as penitrem A) are continuing to emerge.

The idea that particularly problematic mycotoxins that have yet to be identified by “science” may be present in some particularly bad buildings thus is not lacking in plausibility.

If we acknowledge that some moldy environments are inherently much worse than others due to the specific toxins involved, then the idea that possessions that have been exposed to these various environments might differ enormously in terms of level of toxicity and ease of remediation seems wholly reasonable.

And while it may be the case that buildings testing as having large quantities of certain molds known to be particularly toxic (such as Stachybotrys) may be more likely to result in possessions being especially difficult to remediate, the idea that we can know for certain whether possessions will or will not be remediable based on looking at an ERMI score may be going too far.

There is much too much that we just plain don’t know about this phenomenon to make that kind of definite conclusion based on any sort of conventional testing.

At this point, it’s all just playing the estimated odds.

 

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Refrigerators tend to accumulate a great deal of dust that cannot be properly cleaned in their coils and engines. Transferring them to a new location therefore may not be a good idea.

 

LEVEL OF ILLNESS

Obviously, some people are much more reactive to mold toxins than others.

Certain lucky individuals seem not to be affected much by even substantial amounts of the worst mold toxins. Others appear to be only moderately affected.

Even among those people who are affected enough by the toxins to be classified as having toxic mold illness, there are different levels of reactivity.

Patients who are severely reactive may be very strongly negatively affected by very small amounts of toxic exposures that moderately reactive patients would not even notice.

For instance, over the years our own reactivity levels have gone down substantially, to the point where we have become able to live or work in buildings that we previously were unable to spend even a few minutes in without getting very sick.

While we are certainly not unaffected by all mold exposures, many smaller exposures that were wholly incapacitating in the past are not even noticeable to us now.

From what we have seen, reactivity levels for those starting out with avoidance tend to be fairly strongly associated with prior level of illness.

Individuals who have been mostly or wholly bedridden with classic “ME/CFS” (e.g. as defined by the International Consensus Criteria for ME) often tend to be much more reactive than those with more moderate health issues, for instance.

Thus, mold illness sufferers need to be very cautious with regard to making assumptions that the approaches that have worked for them necessarily will be appropriate for others.

Even if the exact same toxins are involved, individuals who are very reactive may require much more stringent avoidance protocols than the ones that more moderately affected patients have found to be sufficient for their own needs.

 

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Nearly all mold doctors and knowledgeable mold remediators suggest not trying to salvage upholstered furniture from a problem home, due to the impossibility of properly removing spores and spore fragments from the stuffing.

 

SOME OBSERVATIONS

Both of us have long used our own reactions to determine the extent to which we are being exposed to mold toxins problematic to us – Erik since the early 1970’s (and more intensively since the late 1990’s) and Lisa since 2007.

During the past few years, as more mold illness sufferers have adopted Erik’s approach, we have obtained reports from hundreds of individuals who have made a concerted effort to get wholly away from their suspect home and belongings, in order to be able to find out the extent to which they were affected by them upon re-exposure.

This experimental process (which we call a “mold avoidance sabbatical”) is described in detail in our book, A Beginner’s Guide to Mold Avoidance.

Following are some observations based on our own experiences and on the reports that we have gotten from others.

 

First:  Of those individuals who have gone on a mold avoidance sabbatical, the vast majority (80-90%) have reported that their own home and belongings were peculiarly problematic for them upon re-exposure.

Specifically, a very high percentage have reported being much more negatively affected by just the cross-contamination of their belongings than by the vast majority of buildings that they have subsequently visited.

In addition, almost all of these individuals have reported that it has been extremely difficult or impossible to clean these particularly affected items to the point where they did not prompt a reaction, regardless of what cleaning methods they tried.

Clothing and plastic items have been especially frequently reported by these mold avoiders as having been impossible to remediate to their satisfaction.

Metal, glass and ceramic items seem to have somewhat higher of a success rate, but in some cases these have been reported those being non-reclaimable as well.

 

Second:  In a minority of cases, new mold avoiders have reported that they have been able to tolerate possessions from their problematic home with at most only routine washing.

These cases almost all seem to be associated with individuals who have been sick for many years (and moved many years ago from the building where they originally got sick) or who suspect that their illness originally started with a work exposure.

We have spent time with a few of these individuals and found that we also were able to tolerate their reclaimed possessions without any problems.

This contrasts with our experiences with the vast majority of other mold illness or (especially) ME/CFS patients, who – unless they have gone to very great lengths to divest themselves of all their previous belongings – virtually always are carrying around toxins the likes of which we rarely run into elsewhere.

This pattern has been so consistent that we now believe that these health conditions originate not with the common mycotoxins that already have been studied by scientists, but rather with much more unusual toxins that are present in only a very small percentage (1-2%) of all buildings and that have yet to be recognized or studied by conventional scientists at all.

We refer to these particularly problematic toxins as “supertoxins” and elaborated on some of their observed characteristics in the book A Beginner’s Guide to Mold Avoidance as well as in a previous blog article.

 

Third: Emerging supertoxins are increasing the extent to which mold avoiders need to be especially scrupulous with regard to cross-contamination issues.

In the past, reports about supertoxins have been mostly confined to two basic types:  “Super Stachy” (a toxin similar in effects to common Stachybotrys, except much more potent and with a greater ability to cross-contaminate) and “Mystery Toxin” (a mostly sewer-based toxin – possibly made by Penicillium crustosum – that results in effects typical of classic Tahoe-style ME).

More recently, increasing numbers of mold avoiders have reported more extreme problems associated with the substance now commonly called “Hell Toxin” (which we believe may be made by a mutated version of the common mold Wallemia).

The stories about Hell Toxin are especially alarming because they consistently involve a much higher degree of cross-contamination than mold avoiders have reported in the past from other supertoxins.

For instance, many mold avoiders have reported that previously clean environments have been made wholly intolerable for months or years as a result of their having very briefly brought in a few papers contaminated with this toxin.

Even more common are stories of people who have permanently ruined their clothes washers (and in some cases their entire homes) by washing items contaminated with Hell Toxin in them.

 

Fourth: The lack of appreciation of the extent to which these toxins have the potential of cross-contaminating has caused many people to inappropriately dismiss the extent to which ongoing toxic mold exposures are playing a role in their illnesses.

Based on our observations, it seems that many individuals with “ME/CFS” or similar conditions become sick in buildings with large amounts of particularly bad supertoxins and then move elsewhere – bringing their contaminated belongings with them.

Because these toxins are so strong even in small quantities, the cross-contamination of belongings often keeps these individuals just as sick (or almost as sick) as they were when they were living in the bad environment.

Frequently what happens is that these individuals have their current homes tested using the ERMI or other methods and then (because the building comes out as okay on the test) dismiss the idea that toxic mold has much to do with their illness or that mold avoidance might be helpful to them.

In other cases, physicians concede that a previous mold exposure might have initially caused the illness but postulate that the illness is continuing to be a problem only because of downstream effects (such as continued presence of internal toxicity or pathogens).

What the people in these scenarios do not realize or accept is that cross-contamination of objects with even moderately problematic supertoxins (such as Mystery Toxin or Super Stachy) may take many years to die down to the point where severe reactors have been able to tolerate them.

Hell Toxin contaminations die down even more slowly (to the point where many mold avoiders have given up on bothering to save things and have just thrown everything away).

Thus, considering whether toxic possessions might be playing a major role in the illness even if the current environment comes up as perfectly fine on conventional testing may be worthwhile, especially if individuals are failing to move toward recovery as otherwise might be hoped.

 

Fifth: Interactions with other patients have the potential of being especially challenging for individuals with mold illness.

As mentioned above, it seems that the vast majority of mold illness and ME/CFS patients are chronically cross-contaminated with unusually problematic toxins (apparently acquired from environments where they first got sick or where their health declined substantially).

The only exceptions seem to be when people got sick many years ago; when they got sick from a workplace exposure; or when they have made an enormous effort to get totally clear from those toxins (e.g. by divesting themselves of all their possessions).

Mold-sensitized people thus may need to be particularly cautious when spending time with other individuals with this kind of illness, due to the high exposure risk.

Spending time in places frequented by these individuals (such as mold doctors’ offices, illness conferences or “MCS-safe” hotels) may be appropriately considered to be risky activities as well.

 

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Ceramic, glass and metal items that can be thoroughly washed often can be moved from a problem environment to a good one.

 

IMPLICATIONS

Online community reports about belongings that have failed to become tolerable subsequent to washing are so common that it seems time for everyone to consider the idea that these patients actually are reporting a real phenomenon and that contaminated belongings indeed often are not as easy to remediate as some mold specialists make it seem.

Another thing to keep in mind is that mold evolves very fast. Being open to the possibility that the rules that seemed to apply in the past may not be appropriate at all for other situations in the future seems to be critical.

The complexity of this problem means that any attempts to create a single set of rules about “How to deal with cross-contaminations of mold toxins” should be expected to result in a dismal failure in a high percentage of circumstances.

For instance, the situation with Hell Toxin seems to be so over-the-top that most experienced mold avoiders advise that when it comes to even casual contaminations, efforts to remediate likely should be abandoned and the affected items just thrown away.

Obviously, though, throwing everything away every time any mold toxins of any kind are encountered would be a suboptimal and unrealistic strategy from all perspectives.

Thus, adopting a more nuanced perspective that takes into consideration the specifics of the situation seems to be essential.

 

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Washers and dryers have a high risk of cross-contaminating new environments and often should be left behind.

 

SOME VARIOUS APPROACHES

Following is a summary of a number of commonly discussed approaches to this problem, including some comments about each.

 

Approach #1: “Toxic mold illness doesn’t exist, so don’t worry about it.”

Unfortunately, this is still the official U.S. government position and thus the one that the media feels comfortable reporting on.

Consumer Reports expressed this position about a month ago, for instance.

In the UK and certain other countries, this is the view held by almost everyone in society.

In this alternative universe, environmental mold has the potential of causing allergies or respiratory problems, but does not cause toxicity-related effects (such as neurological, immunological or digestive problems).

When pressed, individuals taking this position will acknowledge that molds found in buildings indeed do manufacture toxins that have been shown in the literature to cause these kinds of effects when ingested.

However, they insist that there is no “hard evidence” that these toxins can cause harm when inhaled and therefore that acting as if they are dangerous is unwarranted.

Since many credible studies about the negative effects of exposures to mycotoxins in buildings on occupants’ health already exist, it is unclear what kind of “hard evidence” would cause the government to acknowledge that mold toxins found in buildings indeed can cause human illness.

It is our hope that establishing toxic mold exposures as a risk factor for coming down with the disease that the government currently calls “ME/CFS” would do it, but for that, a good study will be needed.

In the meantime, we would like to suggest that denying that toxic mold illness exists is a dangerous approach for anyone (including those who are wholly healthy) to follow, since it seems to have the potential of encouraging people to expose themselves to large amounts of toxic mold without worrying about the risks.

The literature makes it clear that toxic mold (including mold found in buildings) has the potential of causing harm to anyone. It thus needs to be treated with caution.

 

Approach #2: “Large amounts of toxic mold are dangerous, but small amounts won’t hurt you.”

This is the approach implicitly used by the vast majority of mold remediation companies in the U.S. and certain other countries.

These organizations acknowledge that large mold exposures may have the potential of causing a wide variety of symptoms, but make it seem as though the removal of the majority of the mold from the premises by their company will result in the problem being solved.

Most ordinary folks who are not experienced with toxic mold will tend to gravitate unthinkingly toward this position as well.

Probably this is an appropriate approach for healthy people or for people who do not have illnesses related to toxicity, as a prevention strategy. Although everyone likely should be cautious about being exposed to large amounts of mold toxins (especially supertoxins), most people seem to be able to tolerate small amounts of even very problematic toxins without noticeable effects.

This also may be an appropriate approach for people who are only mildly affected by toxic mold illness (e.g. at their worst were able to work part-time or be fairly active), especially if Hell Toxin is not involved.

It seems to us to be a wholly inappropriate approach for use with more severe sufferers, however.

In our observation, severely ill individuals (such as those who have become bedridden with ME) consistently are made almost as sick by cross-contaminations of supertoxins as they are by the buildings or outdoor environments where those toxins originated.

For them, more concerted mold avoidance efforts than are suggested by this approach may be necessary if any health progress is to be made.

 

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Pots and pans are among the objects from a problematic home that are most likely to be salvageable.

 

Approach #3 – “Wash everything and get rid of what you cannot thoroughly wash.”

This approach is focused on the removal of even small amounts of mold spores and spore fragments from items.

The idea is to do what one can to remove as much of this “poisonous dust” as possible, with the assumption that even if a small amount of dust remains, this will be at a low enough toxic level to keep reactivities from being triggered in any meaningful way.

The idea that toxins may transfer to surfaces of items in quantities sufficient to trigger responses is implicitly rejected in this approach, which focuses only on dust removal.

It involves removing objects from the questionable environment; washing or cleaning them in an interim processing station (such as outdoors or in a garage); and only then transferring them to the new environment.

The approach encourages the washing of objects in water, in order to remove as many spores as possible. Items that cannot be immersed in water are wiped carefully to remove as much of the dust as possible. Sometimes instructions are given to use vacuuming as well.

If dust cannot be effectively removed (as may be the case with items such as upholstered furniture or books), then those items are presumed to be non-remediable according to this approach.

The idea that only dust rather than transferred toxins matters is the basis behind the idea that buildings have the potential of being remediated to the point of being tolerated as well.

With regard to buildings, this approach involves fixing the water intrusion problem; removing all the growing mold (including all the hidden growing mold); removing dust particles from the air and from HVAC systems through the use of filtration or vacuuming technology; and careful removal of dust from surfaces by washing or wiping.

Unfortunately, the experiences of mold avoiders strongly suggest that this approach may not be sufficient to prevent highly sensitized mold illness patients from continuing to react to the supertoxins that seem to be virtually always present in substantial quantities in the buildings associated with people first getting sick with toxic mold illness.

These individuals frequently report reacting in very problematic ways to certain remediated buildings with low ERMI scores as well as to a wide variety of washed items previously exposed to particularly bad environments.

However, even if dust removal does not result in items becoming wholly tolerable, it nonetheless is an essential first step with regard to any items that are not going to be discarded since they will be much less likely to cross-contaminate new environments if the dust has been removed from them.

Also, unless supertoxins are involved, dust removal usually is sufficient to remove toxins from objects to the point that even severe reactors can tolerate them.

Thus, this approach does seem to have some merit, even though in many cases it is not sufficient to get severely ill patients clear enough to experience much apparent health improvement.

Approach #3 – Examples

 

Approach #4: “Get rid of everything.”

A number of doctors have been reported as having suggested to at least some of their patients that the best course of action is to simply discard everything from their problem home and start over from scratch.

To our understanding, doctors suggesting this method generally do not suggest that every mold illness patient who walks through their door needs to get rid of all their belongings.

This kind of drastic step tends to be reserved for specific circumstances: for instance, when household members are especially sick and when the mold that is present is suspected of being unusually bad.

The presence of sick children in the home also often has the potential of encouraging parents to take the drastic step of leaving everything behind.

In some cases when the toxicity is believed to be cross-contaminating to a great extent, families also replace their cars and make an effort to stay away from environments (such as relatives’ homes) that they visited before getting clear.

Insofar as it is the case that people tend to get sick in homes that contain unusually bad toxins, then it may be that this type of extreme purge likely will be necessary only once for most people.

If subsequent exposures occur to ordinarily moldy buildings, just moving elsewhere and then washing all possessions may be sufficient to resolve the problem.

The downside of the “get rid of everything” approach is that it can be extremely traumatic from both an emotional and a financial perspective.

Both children and adults often are very emotionally attached to their possessions, and having to start completely over is a financial hit that very few people are comfortable enough to be able to afford easily.

The upside of this approach is that it reduces ongoing exposures to the apparently problematic toxins to as low of a level as possible, giving people a totally fresh start.

At least some people who have pursued this route have stated that they have done well subsequently in terms of their health improvements and that they are glad that this is what they decided to do.

Approach #4 – Examples

 

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Many mold avoiders choose to scan their photo collections rather than attempting to keep the photos.

 

Approach #5: “Special remediation methods will allow you to get your stuff back.”

Those advocating this approach seem to be driven by the heart-wrenching stories of individuals who have taken the drastic step of getting rid of all their possessions.

These people usually do not seem not to be questioning the fact that mold victims may be negatively affected by possessions (including washed possessions) that have been exposed to problematic environments – just proposing that special cleaning techniques that go beyond just plain washing may be successful in making items tolerable again.

Those suggesting this method range from product companies to mold remediation firms to physicians.

Occasionally individual patients not profiting from selling products will suggest that a special technique has been helpful to them in remediating especially problematic belongings, but this seems fairly rare.

Much more frequently, those advocating these purported solutions have a personal financial interest either in the product being promoted or in the idea that recovering from mold illness can be a relatively painless enterprise.

Treatments suggested can range from chemicals added to washing water (such as ammonia, bleach, borax, baking soda, hydrogen peroxide or Vulpex) to machines said to break down toxins (such as ozone or hydroxyl generators) to probiotic bacteria to essential oils to sunlight.

Although the academic literature does suggest that ozone, UV light and probiotic bacteria have the ability to degrade mycotoxins, the extent to which these methods work in the real world for this purpose has yet to be studied other than through anecdotal reports from mold avoiders.

It is our observation that what has happened so far for all of these methods is that a very few individuals have reported success while many others have reported that the methods have failed to make problematic items usable for them.

Based on the reports that we have gotten, the best chance of redeeming items seems that it may come from putting a single item in a box and exposing it to strong ozone for an extended period of time (such as overnight).

Other approaches that have been reported as having some usefulness for remediating items contaminated with supertoxins include taking things to a higher altitude for a while and then bringing them back to the usual altitude; soaking them in homemade milk kefir; running them through a treatment or two in ionic jewelry cleaner; putting them in bright sunlight for an extended period of time; and treating them with a flamethrower torch.

Long-term storage has been reported to result in the total remediation of items contaminated with some supertoxins, though this may take a very long time (such as five years or more).

Only loosely wrapping items (rather than tightly wrapping them in plastic) and storing them in a hot, dry storage shelter appears to produce faster results for stored items. Items stored in very humid areas may have the potential of getting worse due to new mold growth. Also, Hell Toxin dies down very slowly and so this method may be less effective when that particular supertoxin is involved.

Other than these, all of the commonly discussed remediation techniques appear to us to be pretty unreliable at remediating particularly problematic items to the extent that mold avoiders can tolerate them.

Approach #5 – Examples

 

Approach #6: “Get clear and then use your own reactions to determine whether you are being exposed to toxins that are problematic for you.”

This is the approach that Erik was taught while serving in the U.S. Army in the 1970’s, with regard to dealing with hazardous substances such as nuclear radiation or nerve gas.

He adapted it for use in identifying and avoiding even very small amounts of particularly problematic mold toxins in the late 1990’s and experienced spectacular improvements in his illness. More recently, hundreds of other patients have used at least some of his techniques in order to move toward increased wellness themselves.

As is outlined in detail in our book A Beginner’s Guide to Mold Avoidance, the crux of the approach centers around the idea of getting wholly away from the suspect environment and possessions for a discrete period of time (such as at least a week or two).

While in some cases individuals may feel better during the initial time away from the problematic environment, the real test comes as a result of re-exposure.

Insofar as individuals are being negatively affected by toxins in the environment, that will become abundantly clear subsequent to experiencing a “sabbatical” away from them.

The mold avoidance sabbatical thus is very similar to a food avoidance trial, in which even small amounts of gluten or other substances are removed from the diet for a set period of time and then re-introduced.

Thus, while reports from those pursuing this type of mold avoidance approach have yet to be published in a peer-reviewed study, the approach itself is well-grounded with regard to established methods of evaluating whether exposures to problematic toxicity are occurring and of avoiding that toxicity.

The track record of success reported by many mold avoiders using this approach is another good reason to consider it.

On the downside, setting up a proper sabbatical to test whether problematic toxins are present can be very complicated, time-consuming and expensive. For most people, getting totally away from usual exposures for even a few weeks is a monumental undertaking.

Still, a trial away from the home environment and possessions is a much smaller commitment than throwing away everything and starting from scratch.

Even if people do end up deciding to totally walk away from everything, knowing that this is because of personal inability to tolerate the possessions tends to provide them with a much higher degree of confidence that they did the right thing than if they had made their decision based only on a theory.

In addition, going through the mold sabbatical process gives people a starting point with regard to being able to assess the extent to which they are being exposed to mold toxins in general – thus making it more likely that they will be able to make safer choices with regard to future housing and product purchases.

One thing that may make this approach a little easier is going into the sabbatical with the goal of getting away from only the current environment (building, possessions, location if it is suspected as being particularly problematic), rather than trying to eliminate all possible sources of mold toxins.

Typically, individuals with this type of illness are being exposed to incredibly potent toxins in their current environments.

Even if they are exposed to some milder toxins in a hotel or elsewhere during the sabbatical, the likelihood that these will be bad enough to prevent them from reacting upon re-exposure to a very problematic home environment is usually pretty low.

Certainly, some of the most dramatic sabbatical experiences have been reported by individuals who went to a great deal of trouble to get as clear as possible (e.g. by spending a few weeks tent camping in a particularly pristine place). So doing this may be worthwhile if it is feasible.

However, if it is not feasible, then a less ambitious getaway still may be useful provided that no possessions from the suspect environment are brought along.

In most cases, people with “ME/CFS” or related illnesses who use this approach find that their home environment feels particularly toxic to them and thus decide to move as well as to abandon or store all (or almost all) of their possessions.

In some other cases, although possessions are found to be extremely problematic, some of them are deemed to be reclaimable after cleaning.

In a few cases, individuals are able to reclaim almost all of their possessions subsequent to some basic cleaning.

In a very few cases, individuals find that most or almost all of their possessions feel okay to them after a sabbatical (but possibly that a few of them are extremely problematic). Usually these are people who have been ill for many years; who moved long ago from the environment where they first got sick; and who already have made some progress back toward wellness.

Note that based on what we have seen, if individuals find that their belongings cannot be easily remediated through washing to the point of being wholly tolerable, then the likelihood that the building that contaminated the possessions will be able to be remediated to the point that they can live in it without being negatively affected is approximately zero.

Approach #6 – Examples

 

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Very frequently, mold avoiders report that clothing cannot be remediated to their satisfaction regardless of what measures they take. Leather goods also are hard to remediate. Jewelry usually is salvageable, however.

 

POSSESSION TYPES

As has been discussed throughout this article, whether particular items can be successfully reclaimed from a problematic environment varies enormously depending on the type of toxins involved as well as on reactivity level.

It therefore is not possible to make any general conclusions about whether particular types of items will or will not be salvageable in all cases. It depends on the circumstances.

However, here is a discussion of relevant issues with regard to a variety of types of possessions that individuals who know or suspect that they are dealing with a supertoxin cross-contamination problem may want to keep in mind when making decisions.

Books: Books tend to be among the most problematic of possessions, since they are impossible to clean properly even of spores and spore fragments (which get caught in between the pages). Ozone tends not to penetrate deeply enough into books to fix the problem. As a result, books contaminated even with milder mold toxins and especially supertoxins may need to be abandoned. Many mold avoiders eventually decide to avoid regular books entirely and to instead read books only on Kindle or the Internet.

Papers: Getting rid of all papers from the problematic environment (or putting them into storage) is generally the best strategy. Documents that are needed can be photocopied. If a very few single original papers (such as a birth certificate or passport) must be retained, ozoning them for a long period of time in a small box could be worth trying.

Photos: Although it might be possible to damp-wipe all photos to remove the toxic dust, this would be time-consuming and likely not address the transferred toxins. Many people choose to scan their cherished photos instead.

Artwork: Especially if Hell Toxin is not involved, a possible course of action with regard to artwork is to remove it from the existing frame, dust it carefully and then put it in a new frame. Although it still might feel a little toxic, most people do not spend time close enough to their artwork for this to likely have a general negative effect on them.

CD’s and DVD’s: These often can be kept as long as they are brought outside the problematic environment and rinsed before being brought into the new environment. Although these are plastic and may retain some toxicity, they usually do not have to be used in close proximity to the sensitized individual (e.g. they may be stored in a plastic bin or cardboard box and then removed just prior to use). Storage cases likely should be discarded.

Rugs: Rugs trap huge amounts of spores and spore fragments and cannot be cleaned effectively. Generally they are thought to be among the most important items to dispose of when dealing with a toxic mold problem.

Upholstered furniture: Spores and spore fragments tend to become embedded in the fabric and the stuffing, and these will not be removed through superficial damp wiping. Ozone will not penetrate deeply enough into the objects to remedy the problem either. Some reports suggest that even after many years in storage, upholstered furniture may remain problematic. Most experts suggest getting rid of it.

Wooden or plastic items: Wood and plastic seem like solid materials but actually contain infinite numbers of small holes that can hold mycotoxins or even fine spore fragments. Plastic also has an electrostatic component that appears to give it the ability to bind tightly with mycotoxins. Although it is possible that wooden or plastic items (such as furniture) might turn out to be reclaimable, in many cases these possessions continue to be problematic even after thorough cleaning. Items made of metal or glass may have a better chance of being salvageable.

Leather items: Leather seems to be especially inconsistent in terms of how difficult it is to remediate. While some mold avoiders report having had a particularly difficult time remediating leather to their satisfaction compared to many of their other possessions, others state that immersing items in water or even damp-wiping them has allowed them to reclaim some leather goods without being negatively affected by them (even when many of their other possessions had to be discarded).

Washable clothing: While clothing that is washed but still causes a reaction may be relatively unlikely to cross-contaminate a new cleaner environment, clothing has such close and continual proximity to the sensitized individual that it may be better just to leave anything that feels problematic behind. Although some mold avoiders report being able to reclaim at least some washed clothing items from badly contaminated environments, many state that they categorically have not been able to do that. Dry cleaning, the Esporta washing system and other alternative cleaning systems seem to have no better track records than just plain washing. While natural fibers sometimes are reported as being easier to remediate than synthetic ones, this seems not to be consistent enough to make any solid predictions in advance of giving washing a try.

Non-washable clothing: As with other non-washable porous items, non-washable clothes (as well as items such as shoes, bags and suitcases) have the potential of bringing in huge amounts of poisonous spores and spore fragments that may permanently cross-contaminate the entire new environment and everything in it. Therefore, if the presence of problematic supertoxins is known or suspected, these items should be left behind entirely.

Jewelry: Many people have reported that jewelry and other small metal items (such as keys) have been salvageable for them. Of course, items should be rinsed outside the new location before bringing them inside in order to control cross-contamination. If jewelry still seems to be irritating, running it through an ionic jewelry cleaner may be worth a try. Non-waterproof watches may be more difficult to remediate from toxicity, but since watch cases are sealed tightly, probably they should at least be free from the potential of cross-contaminating new environments through spores and fragments if their outsides are cleaned before they are brought in.

Eyeglasses and contacts: Although many people reflexively think of their glasses or contact lenses as a part of their bodies, these contain plastic materials that seem especially likely to be cross-contaminated with mold toxins. They also are kept in closer and more constant proximity to the body (and in particular the nose) than any other possession. Thus, while some mold avoiders have reported very successful sabbaticals despite wearing their glasses the whole time, it may be a good idea to replace these at some point early in the mold avoidance process. Contact lenses likely should be replaced early in the avoidance process as well.

Bedding: People in general (and especially sick people) spend a large percentage of their time in bed, with detoxification being concentrated during sleep. Having the bedroom area be especially pristine generally is considered an important mold-avoidance goal. Thus, being especially conservative with regard to not keeping anything associated with sleeping if it might be even a little contaminated may be a good idea. This is especially the case for items such as mattresses and pillows that cannot be effectively cleaned with regard to toxic dust, but even a wooden headboard probably is not worth the risk that it will have a negative effect on sleep unless it is absolutely certain that it is free of problematic toxicity.

Toys: Although it is hard for children (or adults) to give up their toys, taking most toys to a new location can be unacceptably dangerous. For instance, putting stuffed animals through the washing machine probably is not going to be sufficient to eliminate the risk that spores and spore fragments will cross-contaminate the new environment. Toys that can be thoroughly washed in water prior to being brought to the new environment are safer, though it still may be better to keep those toys stored away and then to use them only on certain occasions (preferably outside the home).

Computer devices: Many mold avoiders dealing with Hell Toxin have reported cross-contaminating everything in their new environment when the fan to their contaminated computer went off. Therefore, although replacing computers is expensive and time-consuming, it may be a very good idea to do this anyway if Hell Toxin is suspected to be involved. Other computer devices (such as phones or pads) that do not have fans seem less likely to cross-contaminate after being washed, even though they may still feel problematic for long into the future. Computers contaminated with toxins other than Hell Toxin seem less likely to cross-contaminate as badly, provided that their outsides are cleaned thoroughly. A few mold avoiders have reported successfully remediating very toxic computers through the use of ozone, but this may be inappropriate for computers made of plastic rather than metal.

Refrigerators and air conditioners: Cooling devices collect a great deal of dust in their coils and insides. Cleaning out this dust is basically impossible even with the careful use of a vacuum cleaner. Thus, transferring these appliances from an environment containing supertoxins to a new environment is not suggested.

Air purifiers: Air purifiers that have been run even briefly in an environment containing supertoxins usually feel like the worst item in the house, and changing the filter rarely resolves the problem. Bringing them to a new environment is not suggested.

Washers and dryers: Washing machines are a hot spot for Hell Toxin, which very frequently has been reported to “explode” (possibly grow) in them and then permanently cross-contaminate entire living environments. In addition, both washers and dryers have internal machinery that is impossible to clean with regard to dust particles. Even when only milder supertoxins are present, dryers are especially problematic since they very easily spread the toxic dust particles directly into the air as well as to every piece of clothing that is put through them. Therefore, transferring washers and dryers from environments suspected or known to be contaminated with supertoxins to new environments is not suggested.

Electronics: Electronics such as TV’s, DVD players, CD players and microwaves have insides that cannot easily be cleaned of dust and fans that will blow the dust back into the new environment. Although electronics are expensive to replace, if supertoxins (especially Hell Toxin) are involved, probably they should be sold to less sensitized people or discarded.

Metal kitchenware: For the most part, items such as pots, pans and silverware can be transferred safely to a new environment even if supertoxins are involved, since 1)  supertoxins do not seem to stick as well to metal as they do to many other materials; 2) these items tend to be washed frequently (meaning they likely will die down gradually over time); and 3) contact with kitchen items is usually fairly limited for most people. Some people have reported immediate success at resolving any toxicity on pans by heating them to a very high temperature (preferably on an outdoor stove or barbecue grill so that the released toxins do not make the indoors temporarily feel worse). Like all other items, kitchenware should be rinsed outside the new environment to remove dust before being brought inside.

Ceramic and glass: Toxins may be a little more likely to stick to ceramic or glass surfaces than to metal, but these often have been reported as salvageable as well. They can be treated basically like the metal kitchenware.

Packaged goods: This category includes items such as personal care products, supplements and food. If packages are unopened, conceivably they may be transferred to a new environment after being rinsed. If the items feel toxic, they could be stored in plastic bins or cardboard boxes and then their contents transferred to a different container upon opening. Containers that already have been opened in the problematic environment likely should be discarded.

 

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MORE INFORMATION

Our book A Beginner’s Guide to Mold Avoidance provides more details about pursuing a mold avoidance sabbatical and other mold avoidance topics. It is available for free in PDF format to those signing up for occasional email updates on mold avoidance topics and also as an Amazon Kindle book.

The brand-new book Erik on Avoidance includes a selection of Erik’s writings on mold avoidance topics from 2000-2015. It is available free in PDF format and also as an Amazon Kindle book.

Mystery Toxin and Hell Toxin are discussed in-depth in our previous article Outdoor Toxins of Particular Relevance to Mold Illness Patients,” published here on the Paradigm Change blog.

The Mold Avoiders standalone forum and Facebook group provides additional help to those pursuing the difficult undertaking of mold avoidance.

More information about toxic mold illness and mold avoidance is presented on the Paradigm Change website.

Those signing up for occasional email updates from Paradigm Change about new informational content will receive a free PDF copy of the book Back to the Edge, which provides a summary of Erik’s extraordinary life.

 

ABOUT THE AUTHORS

Erik Johnson has been working to bring medical attention to the role of mold toxins in the disease currently being called “ME/CFS” since the Lake Tahoe epidemic in the mid-1980’s (before there were any articles in the medical literature about the idea that inhaled mold toxins inside buildings could have a negative impact on human health).

Lisa Petrison is the executive director of Paradigm Change. She has a Ph.D. in marketing/social psychology from the Kellogg School of Management at Northwestern University and formerly worked as a business school professor.

 

NOTES

Everything in this article is based on our current understanding of this phenomenon, gained mostly as a result of anecdotal reports and and personal experimentation.

Nothing in this blog or anything else that we might say should be taken as medical advice. Individuals who are sick should collect as much information as possible from various sources and preferably discuss their situations with a licensed healthcare practitioner before making any decisions related to trying to improve their health.

Any and all civil comments from individuals not selling commercial products are welcome in the comments section of this blog.

Links on this page are in orange (no underlining).

Thanks very much for reading this blog.

 

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  • Jennifer Daigle

    Thanks for this article! I just wanted to share briefly regarding contaminated clothing. Many months after having left our toxic mold house, I had already abandoned all of my clothing due to continued reactivity to it. However, my husband and older son had kept theirs. They were washed many times in various commonly-recommended ways – borax, ammonia, laundry detergent that was supposed to kill mold, etc. My baby, who was born with a large hole in his heart (attributed to toxic mold exposure in utero) reached a point where the hole in his heart was getting smaller, but the resulting congestive heart failure, i.e. lung/breathing problems, were getting worse. He ended up hospitalized in a prestigious children’s hospital where the cardiologists were baffled, but increased his Lasix dose to save his life. After he got out of the hospital, our mold doctor, Irene Grant, asked if he was being exposed to any clothing from the mold house. When we answered yes, and that he was in fact sleeping in the bedroom in which those clothes were stored, she told us to throw them all out immediately. We did, and his lungs improved to the point where he was able to stop Lasix completely. I do not recommend ever keeping clothing from a mold house – like most possessions, it is simply not worth the potential harm and contamination of new environments.

  • joseph salowitz

    Excellent, thorough, paper, which I agree with 99% of the time. I especially like an explanation of yours which helped me understand an aspect of mycotoxins better that before…………………….”

    A point that seems to us relevant is that the popular binder cholestyramine – which is comprised of tiny balls of plastic – uses an electrostatic charge to stick tightly enough to mycotoxins in the body to efficiently escort them out through the intestinal tract.

    If mycotoxins stick that well to plastic inside the body, then it seems to us that (as we in fact have observed happening) they should be able to stick particularly well to plastic objects in the external environment as well.

    • LyraKai

      Why because the internal environment and the physiology of the human body is so much like a moldy home? Lost me.

  • sals

    I am so discouraged by all of this because we finally moved from our home but it took every ounce of my energy to do so and to persuade my husband who still believes this is all in my head. He agreed to move after I finally told him I could no longer live with him because I didn’t want to die. But, he wanted to keep all of our posessions and I fear I am suffering once again from our possessions. I tried to persuade him to keep the stuff that was in our basement (which was where I had my worst reactions) in our new garage. Now the garage is hideous and I keep telling him we need to just throw out a lot of items but he will not do it and he treats me like I am crazy. I feel guilty because he doesn’t understand how I am not trying to be a jerk I am just trying to survive but, his derision and my failing health is so discouraging. Are there any good books that help a spouse understand the dire importance of mold avoidance and how it isn’t a power trip from the mold sufferer but a matter of survival??? Also, I have never heard of “hell toxin” before so how does one know they have contamination from it??
    Thank you for listening and I would appreciate any advice.

    • M. Ratcha

      I’m so sorry to hear you are going through this, sals. I have been on a similar trajectory. The science on mold avoidance is weak, and mainstream science and medicine have not done their jobs by researching this phenomenon well. You may have seen articles recently about a top scientist in the UK whose son has been diagnosed with ME/CFS (a common diagnosis among people who eventually find that mold is a big problem for them). His son is practically on his deathbed and can barely move, yet still, the scientist isn’t trying mold avoidance. Is it any wonder that an everyday wife or husband might not believe us in regards to mold?

      I find the phrases “Hell Toxin” and “Mystery Toxin” unhelpful, because to anyone not involved in reading about mold avoidance, they make us sound even crazier. There might be a real toxin (or multiple toxins) behind the phenomenon that people experience, and then describe to each other as “Hell Toxin.” But to outsiders like your life partner, and to a lesser extent mine, running into these phrases makes mold avoidance sound even more like quackery or New Age strangeness.

      Given the lack of science and the poor understanding of the medical community on this, some days I’m not even sure why I myself believe I have mold illness! But I do. It’s understandable that your spouse doesn’t want to let go of his things. My partner is working on this, too. The idea is that he will keep his books and other contaminated objects in storage, and eventually, in his own separate studio, outbuilding, or rented office. He can humor me by taking off his contaminated clothes and taking a shower when he returns to the house from these contaminated places.

      Best of luck to you and your family.

      https://www.washingtonpost.com/national/health-science/with-his-son-terribly-ill-a-top-scientist-takes-on-chronic-fatigue-syndrome/2015/10/05/c5d6189c-4041-11e5-8d45-d815146f81fa_story.html

      • Paradigm Change

        For the sake of clarity, we have been using the colloquial terms spontaneously used by mold avoiders to refer to the particularly problematic toxins in question.

        I spent years encouraging people to come up with better names for the toxins and proposing various names. And if someone would like to propose better names now, I am open to using them.

        So please put some thought into it!

        Best, Lisa

        • LyraKai

          How about mycotoxins?

    • Honest_Lady

      My sincere sympathies. I am sure that had my husband been alive while I was going through Mold Illness, he would have been the same way. He could hardly tolerate my being sick at all and would get angry at me every time I got the flu or other common illnesses. He died several years ago after he caught Lyme disease. He was almost never ill throughout his life until he was bit by a tick.

      I have discovered a few things that are working very well for my mold illness. Let me first say that I do not get any personal money from any of the products that I will mention nor does anyone I know – friend or relative.

      This is what is working for me and I give this information to you and others who suffer because this research has taken a very long time to find and use successfully. I wish I had had it sooner. It’s been almost 3 years now.

      #1) I moved from the original house with the mold in the air conditioner. I was so sick I could barely function at that point. I was able to get a few things washed and set up the new house because my wonderful son was here with me and helped tremendously. Most of my “stuff” has been in the two car garage ever since I’ve been here. I only brought in basic necessities.

      2) I have purchased 6 large room filters that are specifically good for mold because it processes the air with UV light. The name is germguardian UV-C EV9102 room air sanitizer. I did extensive research on what is the best way to kill mold particles. Using the UV light was the best. The ad for this product does not make this claim on the outside of the box but my guess was correct. I could tell a big difference overnight the first time I used it.

      It will take a new light bulb almost immediately (a month, maybe) as the one it comes with is faulty. Some customers said that the company will replace the first one for free. I was too sick to even hassle with them. I just ordered this one below and it has been working for over a year now. This light bulb that is best is from Amazon. They are difficult to install. Pay close attention when removing the old bulb so you can tell how the new one should be installed. They didn’t make it easy.

      CNZ 9 Watts G23 Base UV-C Germicidal Ultraviolet Light Bulb QTY 2

      3) This has done more than anything to help me.

      Natural Living Iodine Plus 2. I get the 5 bottle order because it is the cheapest I’ve found. I’ve used other iodines and the others do not come close to this one’s effectiveness.

      Expensive yes but it’s cheaper than going to a doctor who doesn’t know anything. I increased the pills until I now take 12 in the morning and 12 at night. I take it with cold milk. Look up the signs of overdose and watch for those in yourself. That way you know when you’ve reached your personal limit. Increase slowly until you find your limit.
      4) I had sore on my skin. The doctors always said it was bacterial infection but nothing they gave me worked. The only thing that I’ve tried that has worked, providing I’m taking the iodine, of course, is aloe vera. Some products are more pure than others. I just use a CVS version and like it. Others were less effective. I also use neosporin to make sure that the open sores do not become infected. Combining the two works fine.

      5) I change my pillowcase every day without fail. I use Benefect (from Amazon) to spray on my sheets and blankets as necessary. It is not toxic and very effective for molds. Vacuuming and spraying rugs and floors next to bed helps also.
      I was able to wash and rewash my clothes without have to get rid of them.

      There is more, but these are the basics. I started the Iodine product in January. It is now July and the sores on my skin are almost completely gone. It does take awhile so have to be very patient. Some of the drugs that are administered for mold can be very bad for your health permanently. That is why I chose to do what I did.

      I noticed a return in my energy level very soon after I started the Iodine. Of course, I increased it slowly, so it took a few weeks but I now feel almost normal. My increased energy level was the first sign I noticed that the iodine was working. My skin did not start healing for several weeks. Internal first, then external, I guess. Iodine is a purifier.

      I hope this helps. There is a mold center in Atlanta, Georgia that treats victim of this illness but I was too sick to travel and did not think I could do the overnight and two days of testing. I did get a urine test from them (sent it in) to verify that it was in fact Mold Illness.

      Let me know how it goes. And tell your husband that it’s real, it’s horrible, and it’s not something for which to blame the patient. It might be best to find someone else to stay with until you can recover. The additional stress will not help during the recovery process. Sleep as often as you need to.

      • LyraKai

        Hand sanitizers aren’t anti fungals. Look at what they kill on the label– bacteria, a virus or two.. Benefect is a great hand sanitizer!

        • Honest_Lady

          You are correct. Sorry I didn’t clarify. The hand sanitizers, or some of them, provide another purpose all together. I learned this quite by accident. It doesn’t get rid of the fungus, but it breaks it up so it can be washed off easier. It’s not all hand sanitizers that do this, however.

          • LyraKai

            Just cleaning hands. It contains a surfactant. I don’t understand the need for another product to break anything up. I don’t sell the stuff. I just think it’s a good product, btw!

          • Honest_Lady

            Unless you have dealt with the sores it would be difficult to understand indeed. I wish I could demonstrate it to you. It’s very difficult to explain it in a blog.

            It seems to break down the sore and leave it in mold bits that are then easier to just remove. It’s not nearly as effective as a nail/scrub brush and it doesn’t hurt as much as a nail/scrub brush does on an open sore.

            There is some ingredient, other than alcohol, in some sanitizer that do this quite effectively. I don’t know which ingredient it is. Someone would make money figuring it out.

          • LyraKai

            Hello dear,
            I was speaking of hand washing. I’ve had a rash in the past, no sores. Open wounds or lacerations should not be irrigated in alcohol. I’ve found other ingredients in hand sanitizers, listed on the net, but they’re meant for intact skin. Have you consulted with a dermatologist or an allergist? They have the skill set to help you. Depending on the area, severity different treatments come to mind from Epson salts to collodial oatmeal soaks. Again I’m thinking rashes. You can get a secondary bacterial infection. Please seek professional guidance. Sorry you are suffering.

          • Honest_Lady

            Perhaps you didn’t read my initial blog above. I have systemic mold illness. It is not an allergy.

            I have been to many, many doctors, dermatologists included. They haven’t a clue what it is or how to treat it. I did get tested for molds and it was the highest on the chart for three different kinds. The combination of the three is a real challenge.

            It’s nearly over now. It’s been a very trying 3 years, however. I had to figure it out myself. The diagnosis took about a year. Then research set me up for the protocol. It’s been very successful but by the time I figured out what it was, I was very, very ill…so recovery has taken longer than it would have normally if I had known what I know now.

            That is why I typed it all out above for others, should it help them at an earlier stage.

            I hope this clarifies what we’re talking about.

          • LyraKai

            By tested are you referring to your environment or your body?
            I’ll look for your other post.

          • Honest_Lady

            Both.

          • April Marsh

            My sister is symptomatic and as of 3 weeks ago she was told that she does have black toxic mold in her 3 story home… Her upstairs mold was said to be airborne..however, downstairs was not as that time… We are having a tough time finding doctors who are taking new patients near the Alabama and Georgia areas…The waiting list is at least a year.. we are so torn as to what is the first step in all of this… She would just like for her primary doctor to order all of the mold testing for her entire family and to include her 2 kids but she does not know exactly which test to tell her primary care doctor and then just go from there… We need help at this point because it is like we are all chasing our tails and nothing is being done about it… Also, my sister has not been able to locate a mold doctor who takes her BCBS insurance and it is all soooooooo expensive… Please help….

          • Honest_Lady

            My sympathies for your sister and her family. Breaks my heart. At least you’re helping her at an early stage. That is good.

            I found out about this center entirely too late but would have gone there had I not been so very ill by the time I found out about it. Two days of testing. Then they give you supplements, meds, etc. to take home.

            Location: Atlanta, GA Website: http://ntced.org/

            It ran a little over $2,000.00 and they took insurance. In fact they preferred insurance. ALSO: They can treat you over the internet talking face to face with a doctor. I don’t know how much that was. It’s probably cheaper. They don’t tell you that, however, until the 1st option is out of the question. At least you’ll know to ask for it should it be too far for her to travel.

            They will have you take two test before your appointment. They will give you the phone number of their testing facility. Call them, and they will send you the packages and directions for both. Do it, and send it back. Those two tests cost about $1100.00 as I recall. They will email the results to you.

            I looked for reviews of this place but found none. That’s never a good sign to me. I hope you have better luck.

            I could not find any doctors in my local area who knew how to treat it or even could diagnose it. I went to about 8 or 10. Waste of money. It’s not in the main physician’s reference books so you get a lot of bad diagnosis and prescriptions for antibiotics, which, BTW, will make it worse if you take them.

            Ist — Cut out ALL SUGARS and most GRAINS like wheat and rice. Those feed the mold and it will grow very rapidly inside and become systemic.
            It is VERY difficult to fight after that. I have not had a problem with honey, however.

            Feel free to write back should you have any questions. I wish you well.

          • Honest_Lady

            FIRST – Tell her to move or stay with you while she recovers. There is absolutely no choice. If husband says that he has no symptoms that could very well be true. It does not effect everyone the same way. Watch the children carefully.

  • hhhava

    Hi,
    Thank you for this truly excellent article. My boyfriend developed a very bad sensitivity to mold in a sublevel apartment where we lived in 2006. There was a lot of it very obviously there. We got out and got rid of everything. We shopped for the cleanest, newest most mold free place to live.

    Now we live in a kind of old rather damp studio in a building with a shared coin laundry machine in its basement. We have an air purifyer (hepa, not uv, too small) and a dehumidifyer and he’s mostly ok.

    No black mold visible really anywhere, but lots of dust etc in our apartment and in the basement.

    About a month ago the washing machine broke such that water was sitting in the frontloader basin for about a week before the company fixed it. When it was fixed, I washed our laundry as i have for some time: heavy bleach load of whites first, then all our clothes in a second load. I personally detected no change in oder in the laundry machine nor our washed clothes…but I don’t have a severe reaction like he does… he said to remove those clothes instantly they reaked of mold! How could I not smell that?!?

    We bought new clothes, I put the infested ones in a spare basement room and a week or so later he deemed some of them acceptable sort of sometimes…

    I washed everything at a laundro-mat in vinegar, baking soda, borax and tried different soaps to no avail after washing. But maybe sometimes ok after sitting for a while… Then one time ok after washing in a different washer at the laundrymat, but the next time in just Borax and soap everything was deemed moldy again! And all the stuff sitting, some of which was ok after a while, he said was moldy again now too…

    My boyfriend is angry that I won’t throw all the clothes away, even though their moldiness seems to rely in part on his mood…

    But the real problem is we do not and cannot own our own washer and dryer. We do not have access to any washer or dryer that is guaranteed to be mold free…
    So we can throw the clothes away and buy new ones provided we wash them all by hand or not at all (the more realistic scenario). I have been afraid to even try washing the bed clothes in over a month because dirty bed clothes are preferable to those infested by the laundry machine!

    An option someone might suggest here would be that I use someone else’s washer and dryer. I have avcess to the affluent and clean private homes of two employers for which I nanny and one grandmother nearby. But all have some mold-related element that make me afraid to go that rout. I helped get a moldy seal replaced on the washer in one of my employer’s homes and their laundry room still smells of mold. The other home I can smell the slight mildew smell of their laundry, and my boyfriend has complained about detecting mold at my grandmother’s place….

    I guess we will simply have to buy new clothes every few days!

    I will say the only reason I doubt him at all, is that I consider myself capable of smelling mold and mildew easily and do not smell it in the clothes AT ALL. But he says there is something wrong with my nose and what I think is soap smell is really mold smell… but I believe him because he was able to detect that I had an affected garment in my backpack, which he didn’t know was there…so sorry, Honey…

    Help!

    • Paradigm Change

      I suggest that those who have questions about avoidance issues or would like to discuss their experiences with others join the Facebook group called Mold Avoiders.

      https://www.facebook.com/groups/moldavoiders/?fref=ts

      Good luck!

      Lisa Petrison

    • LyraKai

      Most apartment buildings and commercial laundromats don’t reach 140F , the owners don’t want to pay the gas bill. That’s a big part of why washing is so difficult. I finally found a dry cleaner who does fluff and fold with actual hot water. I have her wash everything in hot with borax & then with vinegar to strip out unscented soap and borax. I have her hang things, rather than fold. Sometimes I kick stuff back! I bring it in separated if I feel certain pieces will cross contaminate others. Best of luck!

    • Patricia Edwards

      It is fairly easy to adapt to hand washing . I washed everything by hand for years . Get your partner to share the washing . If your sinks are too small , scrub out the sink in a laundromat , and use that one , after buying a plug , as it probably won’t have one .

  • K.M.E

    Great article. Based on my experiences over the last three years, the information in it is accurate.
    It is so hard to determine which possessions can be saved and at what cost to one’s health both short and long term.
    I’m going through some things now that I had stored after leaving everything behind and practicing extreme mold avoidance. The mold avoidance worked. I saw dramatic improvement immediately. Any problems I have now are a result of re-exposure to problematic environments or things. I can go into any place and tell within a few minutes if there is mold and/or other indoor toxins. Simple avoidance works perfectly and I feel fine after staying clear of these places or things, usually right away or within a few hours. At my worst, it took a few days after exposure to feel o.k., but that was about two years ago.
    My problem is stubbornness and chronic fatal optomisim that maybe, just maybe this time, a known place or object won’t adversely affect me. My stubbornness about believing I can one day be ‘normal’ or unaffected by these toxins (somehow miraculously I suppose), has just gotten me into trouble again and I am sitting outside trying to breathe and stabilize. What just got me are porous items I had in storage that I had hoped to re-introduce into another new home that is ‘clean’ or in which I had no adverse reactions…until today. I had been slowly bringing my old possessions, after I made sure they were cleaned as throughly as possible, into my new place. I was bringing things in one at a time and waiting a day to make sure I was o.k. with whatever was just introduced. So far so good…even including some antique oriental rugs I cleaned myself have been fine. Same with lots of fabric stuff, clothes, curtains and a leather couch.
    The hit came from a sealed new foam memory mattress. When I checked it out before moving it, warning bells went off that I ignored as I had been doing so well.
    It took about five minutes of me sitting on it in my new place to realize that I must have a subconscious death wish. I removed it immediately but the damage to me is done and I’m outside in the open air for the duration. This could be minutes, hours or days. I knew it was problematic but tried it anyway. If I don’t remind myself over and over that these things will make me really sick, I fall for the prevailing attitudes regarding this illness that the toxins that ‘may’ be in my belongings are harmless or their effects are ‘all in my head’. Not being able to breathe is not ‘all in my head’. Being able to pinpoint the culprits and recover after doing nothing but avoiding these culprits has proven to be effective and thus ‘not in my head’.
    I lived without all of my ‘stuff’ for a long time and didn’t miss any of it. I am going to miss feeling well today though and may miss feeling well for awhile…The stuff isn’t worth playing Russian Roulette for my health and life. Stuff can be replaced, even if it means doing without for awhile. Feeling healthy isn’t so easy to just go out and buy or recover.

    • tjardine

      We also went through a horrible experience with mold. We had a bad remediation company who spread Chaetomium all through our house. I’m surprised I don’t see it talked about at all in this article. I would suspect the hell toxin they are talking about is from Chaetomium. In my opinion, and based on our experience, it is as bad, or worse, than Stachy. We had just purchased a $4000 tempurpedic bed which was covered the entire time by about 4 layers of blankets and sheets. After the remediation we vacuumed it really well and brought it back in just because we couldn’t afford a new bed and thought it would be ok since it had been covered. We also had it tested and they said it was clean. We were so wrong! After 6 months of sickness we finally pulled the bed out and threw it away. We immediately saw the results but now are still trying to get rid of all the spores and toxins left behind. Chaetomium travels in dust like no other and is very hard to get out. The toxins are super strong and still in many of our contents that are boxed in storage hoping to eventually keep but most likely not.

      • Leslie Robson Gompf

        Wow! I was wondering — and worrying — if maybe Chaetomium made Hell Toxin. When we first had our home tested, outdoor total spore count was in the 200-300 range. The Chaetomium in my closet was 77,000. (Asp-Pen was ~34,000). We also had Stachy. … While the supertoxins I’m dealing with are clearly bad for me — I swear it takes only one molecule to give me a physical reaction — they aren’t quite as bad as how Hell Toxin is described here.
        Needless to say, I am now 100% a super-super-sensitive. On the good
        side, that means I notice what I’ve suspected to be the chaetomium toxin
        right away so I know instantly if I put on a shirt that I had not adequately done a smell test on. (At this point I’m wearing 90% new clothes — although it took months before I realized I needed to separate my washing into “has been worn while sorting through things or at storage” and not. … I wash toys by hand under running water, scrubbing with a toothbrush, then soak in hot soapy water, then back under running water with a toothbrush, lay them out to dry, and I can walk into the room I did that in and know I missed something. (Poor army men. I wasn’t going to sniff all their parts to find the culprit. And yes, I am insane for doing that to army men, but when you’ve lost well over $100,000 dollars (including the house) it DOES matter that you not spend $10 more.)
        Now if only I could find us a mold-free rental home. This one got new mold this past month. I’ve become fanatical about keeping everything in plastic — I discovered the “toxins like plastic” thing with my nose so now I have red dots on bins that are old but pass the smell test and green dots on bins I just bought and I don’t put old in the new or new in the old.
        What a never-ending nightmare.
        So yea, maybe Chaetomium contributes to the creation of Hell Toxin, but after I tossed the army men, the room seemed fine — until I brought in the next batch of toys to wash.
        Oh, and K.M.E. I *swear* that at least one of the toxins makes me stay where it is. I would go into the house (wearing respirator but not full protective clothing) saying “just grab, bag and get out” and next thing I know I’m sitting on the floor sorting through things. Once it wasn’t until my subconscious sent a song into my head that was talking about dying that I realized I had been “had” by the toxins again. … I think some of them are like the parasites that manipulate the host into doing things that will kill the host but help the parasite. (Maybe the toxins “know” that we’ll bring them where ever we go?)

      • Ginny Norton

        how did you find out about the chaetomium?

  • Kamilla Thomsen

    Paradigm Change – what a great article! I have a question regarding clothing from the mold-infected environment versus new clothing that have been washed together that I hope you can help me out with.
    I live in Denmark and have been very sick for many years. Recently I discovered that my illness is caused by enormeous amounts of (hidden) mold and mycotoxins in the apartment that I’ve lived in since 2010. I wasn’t sick before I moved into my apartment but over the years I got more and more symptoms and sick more and more often. My boyfriend and I moved away from the mold- and mycotoxin-infected apartment 7 months ago. In the beginning (May-June) I experienced some progress, but since then, and especially now that the Autumn has arrived and I’m spending most of the day indoors I’m (again) lying sick in bed most of the time with a flu-like condition.

    Therefore we have decided to throw away all of our clothing from our mold-infected apartment (even though we’ve washed it all on 75 degress Celsius). My question is now: Should we also throw away our newly purchased clothing – from an environment without mold or mycotoxins – that have been washed together with the mold-infected clothing? Is it likely that the infected clothing has cross-contaminated the new clothing?
    Thanks in regard for your answer.

    • LyraKai

      I cannot tell you to toss it, but it definitely could have become cross contaminated… in the wash water, dryer, drawer… hamper. I rely on my nose! A thought– many of my new purchases arrive funky from travel etc You sleuth it out eventually.

  • Cheryl Wood

    We have just discovered 5 days ago that we have mold in our house. We did a cloth test and sent it to a lab in NJ. Our next step is air quality test in 2 days. I have been cleaning out our basement that is filled with our camping gear and winter gear. Also all our food stores are down there. I am just so distraught. How could we possibly walk away from our home and the lives we have build here? Please help me figure out what to do.

  • Penelope Landis

    Is Chaetomium considered a super toxin? We are looking at a house with Chaetomium along a bathroom wall we can easily remove . Im trying to decide weather to do it or not. We love the house and only that bathroom area is a problem.