Outdoor Toxins of Particular Relevance to Mold Illness Patients

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Lake Tahoe

Lake Tahoe

By Lisa Petrison and Erik Johnson

Note:  For more than six years now, the two of us have been part of ongoing discussions involving a total of hundreds of people (including patients, scientists, medical professionals and others) regarding the topic of outdoor toxins that appear to be of particular relevance to individuals with mold illness. The goal has been to collect enough anecdotal information about these toxins and to develop strong enough hypotheses that scientists with the right tools would decide to study the phenomena described in a rigorous way. 

Because such research has yet to be pursued to any meaningful extent, we have decided to share the information that has been gathered so far in a more public way in the hope that resulting discussion will lead to appropriate study. It also is possible that even though all of the information that we have so far is anecdotal and speculative, rather than based on rigorous scientific study, it may nonetheless end up being of value with regard to illness cases that do not respond to conventional treatments.  

The text below is a letter (written by Lisa and with input from Erik) sent to a number of mold illness physicians who have expressed interest in mold avoidance issues. It is an eclectic mixture of anecdotes, observations, possibly relevant research studies, and causal hypotheses. Obviously, none of this is meant to be considered as conclusive. It is offered merely as a starting point for future study — as well as for the consideration of those desperate patients who are not being helped by what doctors using more conventional treatments have to offer them. 

 

Introduction

As you are aware, Erik Johnson and I believe that specific outdoor toxins in certain locations are an important factor in terms of why some CIRS [chronic inflammatory response syndrome, also known as toxic mold illness] patients who are attempting to recover from previous mold exposures fail to make appreciable progress.  I am writing to share with you some information about this phenomenon, in the event that you would like to consider it with regard to your own particularly difficult patients.

My main focus in this summary is the outdoor toxin that (per the Back from the Edge book) Erik first encountered in Berkeley in 1980 and that he states was a driving factor in the Lake Tahoe epidemic of the disease that went on to be called “chronic fatigue syndrome.” (Erik reports that this toxin was present outdoors in parts of the Tahoe-Truckee area in extremely high concentrations in 1984-1986 and then decreased somewhat in terms of concentrations in the area thereafter.)  I will briefly discuss other outdoor toxins that seem to be of particular concern to severe mold reactors as well, toward the end of this note.

I spent about five years (2008-2013) traveling around the U.S. in an RV, visiting hundreds of different locations in more than 20 states.  This allowed me to get a clear understanding of the effects that various outdoor toxins had on my system without the confounding variable of changing indoor environments.  Erik has traveled around the U.S. in his own RV and also has spent a great deal of time observing the characteristics of this particular toxin by living in proximity to it in the Lake Tahoe area (using military decontamination techniques to avoid being made ill by it).  More recently, numerous additional people have become skilled enough at extreme mold avoidance to be able to provide solid reports to us about various locations as well.

Following is a summary of information that I believe to be the case about the outdoor toxin that we consider to be particularly important with regard to individuals suffering from toxic mold illness – the one that played a role in the Tahoe epidemic.

 

Nicknames and Symptoms

*  The toxin has been informally referred to by mold avoiders by a few different names:  “Tahoe Toxin,” “Mystery Toxin” and “Ick.”  (The latter nickname is derived from the term “Idiopathic Contaminant” or “IC.”)

*  The toxin has a cluster of very specific symptoms associated with it (listed at the bottom of this note). Although some of these symptoms also are associated with various kinds of mold toxins or various other toxins, many seem to be much more specific to this particular toxin.

*  As with toxins originating in moldy buildings, this toxin appears to be much more problematic even in very tiny quantities for people who previously have acquired toxic mold illness or who have apparently related illnesses (including ME/CFS, chronic Lyme disease, Gulf War syndrome or fibromyalgia) than it is even in much larger quantities for healthy people. (In cases of more intense exposures, otherwise healthy people may be noticeably affected, with symptoms manifesting mostly as mood issues but occasionally as heart attacks.) Only in a few cases (specifically: the Tahoe epidemic) do people seem to have been driven into CIRS-type illnesses from exposures to this toxin alone, without exposure to a particularly bad building also being experienced.

 

Sea otters off the coast of northern California have been affected by a variety of marine biotoxins -- including domoic acid, the one causing Amnesic Shellfish Poisoning.

Sea otters off the coast of northern California have been affected by a variety of marine biotoxins — including domoic acid, the one causing Amnesic Shellfish Poisoning.

 

Hypotheses Regarding Origination

*  The symptoms that are associated with this “Mystery Toxin” are extremely similar to those associated with marine biotoxins, such as those made by certain diatoms or cyanobacteria.  For instance, following is a paper looking at a marine biotoxin called domoic acid, which became recognized as causing a disease named Amnesic Shellfish Poisoning subsequent to an illness outbreak in Canada in 1987.  All of the ASP symptoms described (including extremely severe memory losses, severe headaches, seizures, agitation, hemiparesis, distal atrophy, weakness of extremities, severe gastrointestinal issues, and a few deaths attributed to heart attacks) were all reported at equal levels of severity during the Lake Tahoe epidemic in 1984-1986.  A variety of other aquatic biotoxins are accepted in the literature of being capable of causing similar symptoms.

*  These aquatic biotoxins are accepted in the literature as causing health damage via specific mechanisms: by affecting GABA/glutamate, calcium ion channels, and the hippocampus/amygdala. Abnormalities with these mechanisms tend to be associated especially with health conditions such as seizures (and seizure-related emotional conditions such as rapid-cycling bipolar), excitotoxicity, and cardiac dysfunctions — all conditions that aquatic biotoxins are acknowledged to cause.

*  From what I have been able to find, there is only one mold toxin that has been shown to be capable of producing damage via these mechanisms:  Penitrem A, an emerging mycotoxin with several dozen papers in the literature.  At some point soon, I am going to summarize this information into a review (unless one of you would like to do that!) and then blog about my thoughts on it. In the meantime, here is a list of all of the peer-reviewed articles that have been published about it so far, as well as a news story about it published in Science Daily.

 

Penicillium Crustosum, a mold that sometimes makes the dangerous mycotoxin Penitrem A

Penicillium Crustosum, a mold that sometimes makes the dangerous mycotoxin Penitrem A

 

*  Penitrem A is made by a few species of mold, including Penicillium crustosum.  P. crustosum is a mold that is listed on the ERMI as indicative of water damage to buildings but nonetheless categorized as “Group 2,” and it is my understanding that this mold is thought to rarely produce toxins when growing indoors. The case reports in the literature seem to be suggesting that the problematic toxin, Penitrem A, occurs either when it is growing outdoors or when growing on food. Penitrem A is accepted in the literature as capable of causing significant damage even in very small quantities.

 

Angel Moldes-Anaya, a Norwegian researcher studying Penitrem A.

Angel Moldes-Anaya, a researcher studying Penitrem A in Norway.

 

*  Much of the recent prominent literature about Penitrem A (including the paper profiled in Science Daily) is from a researcher named Angel Moldes-Anaya out of Norway. That is of particular interest to me since “CFS” frequently seems to manifest itself particularly severely in Norway (e.g. severely enough that Rituximab — a chemotherapy treatment that destroys all the B cells in the system — is being studied there in a mainstream way as a treatment for the disease).

*  A few more notes about P. crustosum:  It is a physical match for the mold that Erik encountered growing on the log that triggered him into severe “CFS” in 1985 (green-beige with white tips);  it is known to make Penitrem A while growing in sewage; it produces airborne spores; and there is one report that it is capable of growing in the human sinuses.  (Whether the form growing in the sinuses is capable of making Penitrem A is unclear.)

 

Observations Regarding Environmental Characteristics

*  Regardless of what the toxin associated with the Lake Tahoe epidemic consists of, it mostly seems to be associated with sewage (including sewers, sewage ponds and — occasionally — RV black water tanks).  It also has been noted with regard to a few forests that have been treated with fire retardants and with regard to one compost farm.

*  The extent to which cities end up with sewage dumped into rivers or other bodies of water (due to infrastructure issues insufficient to handle overflows associated with storms) seems to correlate fairly well with the extent to which this “Mystery Toxin” is an observed problem in those cities.

 

Sewage being dumped into a river.

Sewage being dumped into a river.

 

*  Anecdotally, the “Mystery Toxin” seems to be particularly associated with places that have been contaminated with one or both of the following types of manmade chemicals:  a) industrial solvents (such as the TCE used to “wash” computer chips in the SF Bay Area in the early 1980’s or the underground dioxane plume often discussed as currently threatening the Ann Arbor water supply)  and  b) forest fire retardant usage.  I thus believe that one or both of these may be a factor either in causing the microbes responsible for producing the toxin to grow more readily in those places; in prompting the microbes to produce more dangerous mycotoxins in “retaliation” to the presence of the chemicals;  in providing the microbes with “food” in order to create more dangerous toxins; or interacting with the microbes in some other way.

*  We have no observations of areas that were clear of this “Mystery Toxin” 6+ years ago becoming problematic with it since (though certainly some areas that previously were bad with it recently have gotten worse). This suggests the possibility that a driving factor in the production of the toxin (e.g. chemical, radiation, metal, etc.) is no longer being added to the environment.

*  In general, the “Mystery Toxin” does not seem to be one that originates from inside buildings. When present in buildings, it seems to be either  a)  associated with seepage “from below” (e.g. Henness Flats in Truckee),  b)  originating from sewage backups,  or  c) brought in from outdoors (e.g. entry carpets at Truckee High School).

 

The "Mystery Toxin" tends to become much more problematic during times of approaching storms, especially in winter.

The “Mystery Toxin” tends to become much more problematic during times of approaching storms, especially in winter.

 

*  In locations where it is present, this toxin tends to become much more problematic at certain times than at others. Sharp barometric pressure drops (oncoming storms) are the biggest trigger for it to become more prevalent in the air. On average, it tends to be more of a problem in the winter (October – March) than during the summer months. It also has the ability to blow long distances (we believe at least a few hundred miles at strengths sufficient to have an effect on those pursuing extreme avoidance, if winds are strong enough and there are no barriers such as mountains), and so taking into consideration wind direction can be important in monitoring its effects.

 

Cross-Contamination

*  This toxin cross-contaminates to a larger extent than most indoor molds. Items that have been badly contaminated by even a brief exposure to a particularly bad location may not be remediable (to the ability of hyperreactive people to tolerate them without negative effects).  Insofar as items have not been washed, they may easily cross-contaminate other items as well.  (For this reason as well as others, we believe the toxin to be carried on spores that are easily transferable rather than just present as a toxic gas.)  Cars that have spent time in a particularly problematic location may be cross-contaminated enough to be unusable by severe reactors for many years after removal from the problematic location.

 

Vehicles contaminated with the "Mystery Toxin" may feel worse when temporarily brought to a higher altitude, but then improve when driven back down again.

Driving a vehicle temporarily to a higher altitude has been reported as being helpful at nullifying some of the cross-contamination effects of the “Mystery Toxin.”

 

*  Most typically suggested forms of cleaning such as the use of chemicals are ineffective at removing this toxin.  Washing the item to remove spores and placing in sun may be helpful for mild cross-contaminations. The use of microbes (particularly homemade kefir but possibly also EM) has some positive reports. Very strong ozone (such as applied to a single item enclosed in a box for a few days) has some positive reports.  The use of a flamethrower torch has positive reports from some mold avoiders for toxins of all sorts, but obviously this is a dangerous approach that is limited in applicability. A number of people have reported with regard to vehicles transiently cross-contaminated with this toxin (such as inadvertently driving through a “plume” of it) that bringing it to a higher altitude (such as 1000 feet higher), leaving it there for a few hours, returning to the baseline and then washing all surfaces with water and mild soap can be helpful.  But in general, especially for people who have been living for extended periods of time in locations that are problematic with this toxin, attempting to remediate belongings from it may be best considered a lost cause.

*  Air filters are not helpful in allowing people to live in places with this toxin.  What typically happens is that the filtration seems to be helpful for a few days, but then the unit (meaning the whole plastic unit rather than just the filter) becomes so cross-contaminated that it is the worst item in the house (making it counterproductive to keep using it).

 

Problematic Locations

*  For people who are already sick with toxic mold illness, the amount of this toxin in the outdoor air in particularly problematic places appears to have the potential of keeping them just as sick as if they continued to live in all but the most problematic buildings (e.g. worst 1% of all buildings). Hoping that mold-injured patients can move into even a pristine building and make any progress at all in a location where the air is particularly problematic with regard to this substance may not be realistic, therefore.

 

The skyline of Wichita, a city where a number of mold avoiders have done well.

The skyline of Wichita, a city where a number of mold avoiders have reported doing well.

 

*  In our experience, most major cities have at least a moderate amount of this toxin present at least some of the time.  Many smaller cities do as well.  Cities that have relatively little of it (such as Palm Springs, Santa Cruz, Wichita, Albuquerque and — with scattered problem days — Las Vegas) tend to be ones where people recovering from toxic mold illness often do relatively well.

*  Some locations are particularly affected by this toxin, according to the reports of people doing extreme mold avoidance.  These same locations also tend to generate many reports of sufferers having a hard time recovering no matter how many times they move (or what kinds of ERMI scores their new homes get, how many times they start fresh with new belongings, or what kind of medical treatments or other treatments they receive).  Although this is not a comprehensive list, places in the U.S. that I believe to be bad enough to be considered as an important factor for people who are not recovering as expected include the following:  Ann Arbor (MI); Dallas-Ft. Worth (TX); Truckee-Tahoe (CA-NV); most of the SF Bay Area (only very sporadically in SF itself — much more consistently and strongly affected are Mountain View, Berkeley/Richmond/Oakland and certain other towns in the area); scattered other towns in northern California (a few of these include Petaluma, Monterey, Sacramento, Fresno and Grass Valley); at least some parts of western Oregon (including Eugene and Portland); much or possibly all of Delaware and NJ; Washington (DC); at least some of the Boston area; at least parts of upstate NY; and at least parts of Alabama and Louisiana. The “Mystery Toxin” in these places seems to rise well above ground, with a number of people reporting being able to detect it in an airplane prior to landing.

 

A sign near the Washington D.C. zoo, providing an alert about sewage dumping.

A sign near the Smithsonian National Zoological Park in Washington, D.C., providing an alert about sewage dumping.

 

*  The entire Tucson/Phoenix area (with the possible exception of Scottsdale) is significantly but somewhat less intensely contaminated with this toxin — a factor worth mentioning since that is a prototypical area where many people hope that they can get better from mold illness.  (Of course, the indoor molds and pesticides present in many buildings in this area are not helpful either.)  Getting out of the basin (e.g. east to Benson, north to Happy Valley, or at least a few thousand feet up into the mountains) seems to be required in order to escape the “Mystery Toxin” in this area.

*  My own hometown of Chicago feels quite problematic with regard to this substance in winter but (at least in the city and northern suburbs) pretty much okay in summer. In general, the more that patients decline during the winter months, the more likely it may be that this substance is playing a role in their issues.

*  This substance appears to be quite prevalent in Canada.  I would not eliminate the possibility that patients living in any civilized area of Canada are getting enough exposure to this toxin to be having a big effect on them, though this presents a challenge since many patients living in Canada do not have the easy ability to move out of the country.  The best reports from Canada seem to come from Vancouver and Victoria, though these areas apparently are not wholly clear of this substance either.

*  Two international locations that seem to be particularly affected by this toxin are Rome and Taipei. I suspect that it may be an issue throughout much of Scandinavia and the UK as well (explaining at least part of the reason why people from those places often do so much better when on holiday in places known to be good locations), but we will need more reports from people who are familiar with the toxin to confirm that. Whether it is an issue in other places is unclear.

 

Identification

*  It tends to be very difficult even for people who can tell when they are being exposed to building molds (including cross-contaminations of building molds) to know when they are being exposed to or affected by this particular toxin.  The big problems here are:  a) onset of problematic responses tends to be delayed 24-48 hours after exposure;  b)  warning symptoms tend to be vague and usually dismissed as something random from within (e.g. hopeless sort of depression, stabbing feeling in heart or sternum);  c) the toxins are much more prevalent at some times than others and also are blown around on “plumes” (which means that particular locations can be terrific for extended periods of time but then suddenly become horrible);  and  d) cross-contaminations of items exposed to the toxins can trigger responses that are as severe as exposure to the actual problem locations.  Thus, people often do not understand what they are looking for (and thus cannot effectively avoid it) until they have gotten clear of the toxin for an extended period of time and then become purposely re-exposed to it.  (This has always been the purpose of Erik’s “Lake Tahoe Mold Tour”:  to take people to problem places and have them observe their initial responses to this toxin.  And then decontaminate afterwards!)

*  Certainly it may be the case that people with this sort of chronic neuroimmune illness (whether called CIRS, toxic mold illness, myalgic encephalomyelitis, chronic fatigue syndrome, chronic Lyme disease, fibromyalgia or Gulf War illness) have individual reactivities to particular toxins.  However, it is our observation after looking at many dozens of cases (and in Erik’s case, over a period of 34 years) that most or possibly all of the individuals suffering from this type of illness are specifically reactive to this particular mystery toxin, once they learn to identify it. Because we see it as a particularly important factor in the epidemic that went on to be called “CFS,” but also for all patients with these conditions, it is our primary goal to get it identified and studied.

 

Agricultural Toxins

As contrast, I would like to share with you some observations about a few other toxins that seem to have a particular effect on people who are hyperreactive to indoor mycotoxins.

 

The trichothecene-producing mold Fusarium growing in the wake of Roundup usage may be responsible for outdoor toxicity in the agricultural Midwest.

The trichothecene-producing mold Fusarium growing in the wake of Roundup usage may be responsible for outdoor toxicity in the agricultural Midwest.

 

*  Much of the agricultural Midwest (including Missouri, Iowa, Indiana, Illinois, Ohio, Michigan and Wisconsin) is affected by an outdoor toxin that seems to hang like a fog over the entire area and that feels like a moderately moldy building to me.

*  I believe that this is caused by the trichothecenes produced by the toxic mold Fusarium, which has been suggested in a number of published papers to grow profusely in the wake of the use of Roundup (used in these states on Roundup Ready soybean and corn crops grown there).  (See references toward the bottom of this blog.)

*  This toxin does not seem to make people nearly as sick — and certainly does not make people as dramatically sick — as the “Mystery Toxin” described above, but nonetheless seems problematic enough to be a factor in recovery.

*  It’s not my impression that possessions need to be discarded even after long exposure to this kind of toxin, and air filters possibly may be helpful. Below-freezing temperatures and snow also seem to be helpful in decreasing the presence of this toxin in the air.

 

Cyanobacteria Toxins

*  Cyanobacteria toxins result when certain kinds of algae bloom either in freshwater lakes/rivers/ponds or in oceans or other marine water.  Some of the toxins made by freshwater blooms (such as BMAA) are generally acknowledged as being dangerous and are thought by many scientists to possibly be associated with diseases such as ALS, Alzheimer’s or Parkinson’s.

*  People who are hyperreactive to mold toxins seem to tend to be hyperreactive to cyanotoxins also, with many mold avoiders reporting negative reactions when in proximity to water from lakes, rivers or ponds containing cyanobacteria blooms (such as the blue-green algae microcystis).

 

A cyanobacteria bloom on Boca Reservoir, a source of drinking water for the Tahoe/Reno area.

A cyanobacteria bloom on Boca Reservoir, a source of drinking water for the Tahoe/Reno area.

 

*  The symptoms of exposures to freshwater cyanotoxins reported by mold avoiders can be substantial but are quite different than those related to the “Mystery Toxin.”  Some typical ones include inflammation, feelings of drunkenness, loss of coordination and difficulties with thinking.

*  At least from transient exposures, cyanobacteria toxins seem to cross-contaminate only mildly and to be easily removed from objects by washing.  Air filters possibly may be helpful.

*  In localities where drinking water is obtained from lakes rather than from underground sources (and especially when the water is obtained from shallow rather than deep parts of the lake), cyanobacteria contamination of the drinking water supply may be an issue. Although commercial filtration technology for cyanobacteria toxins is available, most water processing plants do not use it, and the U.S. does not require testing for these toxins.

*  A number of mold avoiders have reported being substantially affected by cross-contamination from showering or washing clothes in water contaminated by cyanobacteria. A few have reported that boiling water used for all purposes has been helpful for them.

*  A few mold avoiders have reported being very negatively affected by drinking water from places known to have cyanobacteria contamination of the water supply as well.

*  Home water filters do not effectively remove these toxins from the water, according to both published reports and mold avoiders’ reported experiences.

*  Large amounts of toxic cyanobacteria on the Lake Tahoe beaches – as well as increased amounts of “Mystery Toxin” from the sewers and increased amounts of toxic mold in buildings – have been reported by multiple individuals as having occurred during the Tahoe epidemic (1984-86). Why all of these toxin-producing microorganisms would have become so problematic at the same time remains unclear.

 

Toxins Associated with Newer Fire Retardants

*  Outdoor areas treated recently (such as the past decade) with newer fire retardants may be affected by a newer type of toxin.  I believe this to be a mold or other microbe that becomes problematic in the wake of the fire retardants rather than the fire retardants themselves (e.g. since the problem tends to increase rather than decrease in the months after the fire retardant has been applied).

*  This also causes more moderate effects than the “Mystery Toxin” detailed above, but they still are problematic enough that the areas may interfere with recovery in many individuals.

*  This toxin tends to blanket large areas (often hundreds or even thousands of square miles) rather than being blown around on plumes, and it tends to act up at night rather than during barometric pressure downturns. It cross-contaminates only mildly, however.

*  A few places where this toxin has been observed to be a particular problem:  Flagstaff (AZ); Santa Fe/Espanola (NM); Glacier National Park and surrounding area (MT); certain national and state parks in the Black Hills (SD); and Big Sur (CA).

 

A Toxin that Itches and Burns

*  A rare toxin with an incredibly large potential to cross-contaminate has variably been called the “Itch Toxin,” the “Uber Toxin,” the “Hell Toxin” and the “Hell Fire Toxin.”

 

A mold illness patient took this picture of some of the yellow substance that appeared on both clothing and plastic garbage bags, stating that it felt particularly toxic.

A mold illness patient struggling with what sometimes has been called the “Hell Toxin” took this picture of some of the yellow substance that appeared on both clothing and plastic garbage bags, stating that it felt particularly toxic.

 

*  Its other main characteristic (besides cross-contamination potential) is its ability to cause severe skin burning, in some cases approaching the sort of burns seen in Stevens-Johnson Syndrome.  Because it cross-contaminates so easily and can have such severe effects, it is of particular concern to many mold avoiders.

*  It seems to be growing in prevalence, with recent reports from Seattle (WA), Tucson (AZ), Boston (MA), Tahoe-Truckee (NV/CA) and Boulder (CO). Reports of this toxin (or of one very similar to it) have been shared by most of the handful of mold avoiders visiting or living in England.

*  We suspect that a particular kind of glue may be a factor the production of the toxin at least some of the time.  It also may have an association with fire retardants. It seems to originate from the outdoors (especially but not exclusively from sewers) as well as from within buildings, although since many reports are from cross-contaminations alone, it is hard to be certain of this.

*  The best report that we have on the mold that produces it (from someone who inadvertently grew it on an outdoor patio table) is that it looks like gray dots;  although the description matches Wallemia (a mold that also seems to be associated with itching), regular Wallemia does not seem to be the same thing either in ability to cross-contaminate in small amounts or in severity of symptoms.

*  A few people have noted the association of a yellowish (or orangish-yellow) tinge with this toxin, bringing to mind the “yellow rain” that may or may not have been associated with trichothecene bioweapons.

*  The use of automatic washing machines repeatedly has been reported to be associated with exacerbating the effects of this toxin or possibly allowing for the growth of the microbe producing it.  (Many mold avoiders thus have given up on washing machines and are washing everything by hand, using a wringer or spin dryer when necessary.)

*  Several mold avoiders experienced with this toxin recently have reported it being especially associated with certain laptop computers. This is of concern because laptops are frequently used in public places, thus allowing the potential for increased spread of the toxin.

*  Even experienced mold avoiders seem to have a hard time immediately identifying this toxin when being exposed to it. Most do mention having experienced a deep-seated feeling of fear, panic or depression immediately upon encountering it, however.

*  With few (or possibly no) exceptions, the use of chemicals seems to make this toxin more of a problem.

*  Based on the reports that we have heard, items cross-contaminated with this toxin are extremely difficult or impossible to remediate. Flamethrower torches may have some effectiveness but obviously are too dangerous for most uses. The best recovery stories that we have heard from inadvertent cross-contaminations with it are from people who have abandoned all their possessions and started over.

 

Conclusions

Obviously, all of this information is anecdotal. Perhaps soon, these toxins will be studied more formally by scientists with the tools to do them justice.

Hopefully some of this will be helpful to you in understanding better how many of those of us pursuing extreme mold avoidance are seeing things at this point.  Please share with me any questions that you may have, and please feel free to share this document with your patients or with other practitioners.

Since all of you are working with patients with mold illness issues, I would be interested in hearing more about the locations histories of those individuals who are not responding as hoped to the sorts of treatments that you know are helpful for many people.  That kind of information may help us to better pinpoint additional problem locations, or may help to provide more evidence about the extent to which these locations are indeed problematic for many people suffering from mold illness issues rather than just for a small subset.

For patients interested in this topic, you may want to keep in mind the Locations Effect website forum, which is designed to serve as a repository for people to store their experiences (good or bad) with different locations.

 

 

A video about the Locations Effect by Giles Meehan of “Get Well from M.E.” is available as well.

Thanks very much for your help with this.

Best,

Lisa Petrison, Ph.D.
Executive Director
Paradigm Change

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“Mystery Toxin” (or “Tahoe Toxin”) Symptoms

* Heart pain (in particular, a feeling of a needle through the heart).

* Heart palpitations.

* Chest pressure (a feeling of a dagger through the chest or a marble – sometimes actually swollen – at the sternum).

* Excruciating headaches (migraine-like but not one-sided).

* Extreme photophobia (light sensitivity).

* Extreme noise sensitivity.

* Cognitive problems that go beyond brain fog (e.g. inability to add numbers or recognize words).

* Weird memory losses (e.g. inability to remember the name of one’s hometown or to find the way home).

* Loss of sense of direction (e.g. driving around randomly).

* Seizures or “white-outs” (where the brain goes 100% blank for extended periods of time, sometimes even when a concerted effort is being made to bring up thoughts).

* Severe trembling.

* Paralysis (literal paralysis or feelings of paralysis; often one-sided).

* Organ pain (particularly kidney pain).

* Strong feelings of empty, hopeless depression (unrelated to circumstances).

* Strong suicidal feelings.

* Feelings of paranoia, like people who are usually your friends have become enemies.

* Strong feelings of anger and lack of inhibition in expressing it.

* Other emotions that are bizarrely inappropriate to the situation.

* Convulsions.

* Extreme MCS.

* Marked gait problems.

* Inability to sit or stand up.

* Reactivation of herpes viruses (and emergence of related illnesses such as shingles, Bell’s palsy or herpes simplex lesions).

* Severe POTS (e.g. needing to use a wheelchair).

* Extremely deep skin “dents.”

* Feeling of skin being burned.

* Sore throats that make eating difficult or impossible.

* Veins pop out of skin (look “ropy”)

* Stuck thinking (e.g. spend all day clicking on the same three websites or playing mindless Facebook games).

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Articles on the relationship between Roundup usage and Fusarium growth

Zobiole LH1, Kremer RJ, Oliveira RS Jr, Constantin J. Glyphosate affects micro-organisms in rhizospheres of glyphosate-resistant soybeans. J Appl Microbiol. 2011 Jan;110(1):118-27. PMID: 20880215

Fernandez MR, Zentner RP, Basnyat P, Gehl D, Selles F, Huber D. Glyphosate associations with cereal diseases caused by Fusarium spp. in the Canadian prairies. European Journal of Agronomy. 2009; 31(133-143).

Krzysko-Lupicka T1, Sudol T. Interactions between glyphosate and autochthonous soil fungi surviving in aqueous solution of glyphosate. Chemosphere. 2008 Apr;71(7):1386-91. PMID: 18177917

Sanogo S, Yang XB, Scherm H. Effects of Herbicides on Fusarium solani f. sp. glycines and Development of Sudden Death Syndrome in Glyphosate-Tolerant Soybean. Phytopathology. 2000 Jan;90(1):57-66. PMID: 18944572

Mother Jones Article

Food Democracy Now Article

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We would like to offer our sincerest thanks to all the people who have contributed their experiences, theories and comments in online discussions about this topic over the past 6+ years.

Additional comments on this topic are welcome.  Please send them to: paradigmchange at yahoo dot com.

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  • Sue

    Thanks for all the great information Lisa. A few questions 1) do you find that patients can return to problematic areas once they have made progress recovering from their mold illness? Otherwise it seems as though a large portion of the US would forever be off limits to them 2) where did you find mold patients recovered the best? 3) Is there any way for patients to determine how much this toxin is affecting them or whether their belongings are contaminated? So many of the symptoms above are also associated with Lyme, coinfections, or other illnesses and if all of the areas you listed above are contaminating belongings then a large majority of patients would have to replace everything they own. As a Lyme/mold patient I’m trying to figure out how to best use your information to assist in my own recovery. Thanks!

    • Hi Sue.

      1) Based on the cases that I have seen, reactivity to the toxins in this article goes down relatively slowly compared to reactivity to most building toxins. I’ve heard many stories of mold avoiders being able to tolerate the vast majority of buildings but still being very reactive to even small amounts of the toxins in this article (especially the Mystery Toxin), for instance. Definitely that makes things difficult, since continuing to be exposed can slow down recovery substantially. On the other hand, since there are certain locations that are particularly problematic in terms of the outdoors, moving from one of those locations to a better place can help some people a lot. In my opinion, the most important thing is being able to quickly identify these toxins so that they can be avoided effectively. In many cases, some towns within an area are much much worse than ones right nearby, for instance.

      2) Based on what I have seen, people who have managed to get from severe mold illness to “mostly recovered” all live in areas with air that is pretty good in terms of not having the toxins mentioned in this article, in a home that does not have much of a problem with toxic mold, without cross-contaminated possessions. And I have seen no exceptions. People who live in really problematic areas, or who have cross-contaminated belongings, or who live in a problematic home with regard to mold growth make much less progress or no progress. Living in a tent in the desert makes little difference if the outside air has a substantial problem or if contaminated possessions are present. People living in good houses or apartments (admittedly a challenge to find) can do equally well, provided that they are not being weighed down by outdoor exposures or cross-contaminated belongings.

      3) The only way for people to have an understanding of how much the outdoor air, or their own building, or their possessions are having on them is to get away from all suspect exposures for a period of time and then to go back to see how they react. Detailed discussion of how to do that is in the preliminary version of the book that Erik and I are writing, called “A Beginner’s Guide to Mold Avoidance.”

      Information on obtaining a free copy of the book, joining our Facebook group on mold avoidance, and other mold avoidance information is on this page of the Paradigm Change website.

      http://www.paradigmchange.me/avoidance/

      Best,

      Lisa

      • Kim

        As a person recovering from biotoxin illness, living in a low mold house, without cross-contaminated possessions, but near Eugene, OR three things really stood out to me in this article:

        1. I realize that I seem to have encountered at least three of these outdoor contaminants, but I just didn’t know what they all were. I’ve been exposed to cyanobacteria in and around Fernridge Lake (and surrounding ditches), after a large bloom in Aug. 2014. Also, I’ve encountered a strong sewage smell in areas that was particularly insidious and made me more ill than expected, even just driving by. And I’ve become distinctly ill from driving through area where strawberries are cultivated – strawberries are regularly sprayed for Fusarium. I finally see some of the connections here.

        2. This was a huge revelation – the barometric pressure-related headaches that so many mold sufferers talk about may not be from the atmospheric pressure itself. Um, wow. It never occurred to me that it could be location-based, I’ve lived here all my life, and my entire family gets these barometric pressure-related migraines. I thought this would happen to me anywhere – but from your experiments and travels, it seems that may not be the case. Thank you for sharing that.

        3. Sharing this information is incredibly valuable. Thank you for doing so. Sometimes I get so tired of trying to explain my experiences to others, things that I can’t explain very well even to myself, and it feels incredibly isolating and pointless at times. But reading the experiences of others has helped me to put more pieces of the puzzle together, realize I’m not nuts(!) or “oversensitive” or imagining things.

        Thanks for this article.

        • Judy Nunya

          strawberries, interesting

  • Molly

    A lot of excellent info – I was living in the Bay area (SF) when AIDS and the ‘mystery illness’ were being identified, I did not know CFS has its origins in Tahoe area. Even if that is accurate (CFS of course attributed to viral infection at time, Epstein Barr, etc.) it may have transferred to the city and been a factor in the CFS epedemic- I think they called it that in 1985-86.

    I really appreciate the location info, and description of outdoor mold vs indoor mold plus about air purifyers, so much to learn and know. I became ill, was fatigue/depression based, diagnosed bipolar at age 19 (living in SF) and some awful years of illness (the rapid cycling BP connection of interest to me also) that were a mix of physical and mental symptoms.

    I have just finished a book about my experiences and include the alternative things (detox, IV vitamin C, gammaglobulin, etc.) I did (treatments, lifestyle choices, location effects) that helped me. So many diagnosed bipolar do not understand how toxic exposures and viral illness can affect their mood states, and cause symptoms.

    If interested at all, would send you a free copy of gift on kindle.

    Great work you are doing. Molly

    • Paradigm Change

      Sorry that I am just seeing this comment now, Molly! I would enjoy reading your book.

      Lisa Petrison
      info at paradigmchange dot me

      • Pi Bee

        i wish to get this book Molly too?

  • Brian

    Hello and thank you for such an informative article. I am curious to what affect Organic Sulfur – MSM may have on the symptoms of Mold Illness Patients. I have been supplying Organic Sulfur – MSM to many of my bodywork clients for years and have witnessed remarkable improvements in health, some quite miraculous. The benefits are extensive, though I suspect some of the more miraculous results have come from overall detoxification, removing of heavy metals, reductions in inflammation, and overall cellular regeneration resulting in improved organ function. I am very curious (and hopeful) if Organic Sulfur – MSM could be of benefit to those on the more extreme end of mold sensitivity or CIRS. A friend of mine is struggling with CIRS and many of her symptoms (though more debilitating) are similar to symptoms I have seen reduced or eliminated in my clients. Please let me know if you or any others with mold sensitivity or CIRS would like to try our product, I would be happy to donate some to see if it would help. Most commercially available MSM is of low quality while Organic Sulfur – MSM has deeply cellular regenerative effects, especially when combined with Vitamin C. Our website is http://www.healingsulfur.com. Thank You for all that you are doing, Brian

  • Constance Bassett

    Lots of GMO corn growing here in Tillamook county on the Oregon coast. Very hard on a lot of people… especially after the first rains of late summer.