Which Therapies Do Improved Mold Avoiders Believe Helped Them?

 

Showering and changing clothes immediately after exposures is cited by many improved mold avoiders as having been critically important or very helpful for them.

July 18, 2016

By Lisa Petrison, Ph.D.

Very frequently, when people who have been sick with a chronic disease report having made substantial improvements in their condition, others who also have that disease want to know what they believe was responsible for those improvements.

Especially when particular diseases are known to be very difficult to treat effectively, physicians or medical researchers often share anecdotal reports about patient improvements with one another as well.

Certainly, these kinds of anecdotal reports are not as definitive as controlled experimental studies in providing evidence about whether particular treatments are safe and effective with regard to addressing a particular disease.

Nonetheless, looking at these kinds of reports can give those interested in learning about the disease some clues into the types of treatments that appear to be especially promising and thus that may be deserving of research investments.

The downside to anecdotal reports is that it can be difficult to know whether reported improvements or declines are due to the treatment being evaluated or to other factors.

This especially is the case when some or all of the positive effects of the treatments emerge over an extended period of time, rather than being immediately apparent. In that case, both doctors and patients may tend to underestimate the effects of the treatments, compared to situations where the effects of the treatments are noticeable right away.

In addition, individuals’ assessments of the effects that treatments have had on them may be influenced by their expectations about what they think might happen as a result of them. (Experimental studies often use placebos to try to control for this effect.)

Keeping all of this in mind, it is the goal of this article to look at the treatments that individuals suffering from mold-related illness who have made substantial health improvements believe have been helpful to them.

Some analysis looking at the extent to which particular treatments used are correlated with the extent to which particular participants improved also is included.

Although this discussion will not provide the final answers with regard to which treatments are the most effective or useful for treating this sort of disease, hopefully it will shed some light on the topic and also pave the way for more controlled research studies in the future.

In addition, since the information in this article was collected from individuals who have an interest in toxic mold or who have made some efforts to avoid mold, any conclusions that are drawn should be taken to apply only to them rather than to those who have yet to pursue any mold avoidance at all.

 

Shredded-Vietnamese-Chicken-Salad-575x381

Eating a quality, whole-foods diet came in as the second-most helpful treatment in the mold groups poll.

Facebook Mold Group Polls

The Facebook group poll was run in the five largest mold-related patient groups on Facebook. The poll was described to members of these groups as follows:

“Please participate in this poll only if you have achieved substantial improvements in your health compared to where you were at your worst. Which therapies do you feel have been critically important or of major benefit to you with regard to helping you to achieve improvements in your health? Feel free to add items to the poll if you like.”

The poll was started in the Mold Avoiders group on June 13, 2016.

On June 17, the was expanded to four additional groups (with all the items added by members of the Mold Avoiders group included as initial options in the other groups).

A total of 158 individuals from the five groups participated in the poll.

The mold groups included were Mold Avoiders (n = 66);  Toxic Mold, CIRS and Lyme Disease Support Group (n = 33); Toxic Mold Support Group (n = 27); Black Mold Symptoms (n = 14); and Toxic Mold – Rediscovering Health and Wellness (n = 18).

The percentages of participants who stated that various treatments had been helpful to them is summarized on a linked PDF page.

Mold Group Poll Results

 

Note that there is a glossary toward the bottom of this article defining the treatments mentioned in these research efforts.

As might be expected since all the respondents were members of mold groups, “Avoiding toxic buildings” was by far the most popular choice, with 82% of respondents stating that they believed this had been of major benefit to them.

Two items related to foods were the next most popular choices among respondents to the poll:  “Quality whole foods diet” (64%) and “Avoiding gluten, dairy or other reactive foods” (61%).

Two additional mold avoidance items were chosen by many respondents: “Avoiding cross-contaminated possessions” (59%) and “Avoiding toxic locations” (54%).

The only other item selected by more than half of participants was “Vitamins and supplements” (51%).

Additional items that were cited by more than 5% of participants included the following.

Environmental avoidance related:

Spending time in pristine locations (32%); consistent decontamination before returning to safe space (15%); rapid decontamination (e.g. within minutes of exposure) (10%)

Food avoidance related:

Avoiding foods with mycotoxins and molds (22%); avoiding glyphosate in foods (18%); mold free diet for four months minimum (11%)

Food related:

Juicing, green smoothies or raw produce (25%); fermented foods (13%)

Binders and chelators:

Cholestyramine (30%); activated charcoal (28%); EDTA (5%)

Supplements:

Probiotics (28%); glutathione (24%); methylation related supplements (24%); essential oils (22%); homeopathy (16%); minerals (11%); fiber such as psyllium to keep things moving (9%); glutathione precursors (8%); systemic enzymes (7%)

Pathogen treatments:

Antifungals (13%); antibiotics (8%); antivirals (8%); treating Lyme and its co-infections (8%); antiparasiticals (6%); BEG spray (6%); oral and intrnasal antifungal treatments (5%)

Other drugs:

Cannabis (8%); vasoactive intestinal peptide (VIP) (8%)

Other therapies:

Reducing stress (39%); Epsom salt baths (29%); coffee enemas (18%); infrared sauna (16%); ionic detox footbath (10%); sweating (not via sauna) (10%); IV vitamin therapy (8%)

Most of these treatments have been mentioned frequently with regard to healing from mold-related illness, and so it is not a surprise to see them turn up here.

One thing of note is that only a few of the most cited therapies are pharmaceuticals requiring the involvement of a prescribing physician. While about a third of participants stated that they had benefited substantially from cholestyramine, none of the other prescription drugs was cited by even 15% of those participating.

Whether this was due to the lack of pharmaceutical company interest in this sort of disease, to drugs in general being mostly inappropriate to treat diseases of toxicity, or to many patients not having access to appropriate treating physicians who would prescribe such drugs is unclear.

 

Books

A high percentage of improved mold avoiders said that paying attention to cross-contamination of objects had been very important for them.

Mold Group Comparisons

The top ten therapies for each of the five participating mold groups are summarized on this linked PDF page.

Individual Mold Group Results

 

In addition, comparisons were run between the responses from the Mold Avoiders group and the combined responses of the other groups.

Mold Avoiders vs. Other Mold Groups

 

As might be expected based on the topic of the group, participants from the Mold Avoiders group were more likely to state that they had been  helped by a variety of mold avoidance activities (including avoiding toxic buildings, avoiding cross-contaminated possessions, avoiding toxic locations, rapid decontamination, and consistent decontamination).

In addition, they were more likely than participants from other groups to say they had benefited from several other items:  avoiding glyphosate in foods; fermented foods; methylation-related supplements; ionic detox footbaths; homeopathy; and neural therapy.

On the other hand, they were less likely to say that they had benefited from several other items:  reducing stress; probiotics; activated charcoal; glutathione; avoiding foods with mycotoxins and molds; and antifungals.

One possible explanation for some of these differences is that scrupulous mold avoidance (such as is discussed frequently in the Mold Avoiders group) may have the potential of making some therapies more helpful or of causing others to become less necessary.

For instance, mold avoidance pioneer Erik Johnson has said that effective avoidance of environmental mold toxins has allowed him to be able to consume a wide variety of foods (including those contaminated with molds or mycotoxins) without apparent negative consequences.

It also appears to me that scrupulous mold avoidance tends to be more beneficial to patients who start off at a more severe level of illness and that many members of the Mold Avoiders group indeed were especially severely ill before starting avoidance.

Therefore, if some treatments are better suited for patients who have been severely ill and other treatments are better suited for those who started off less severely ill, that could be playing  a role in the differences observed.

Other factors such as specific treatments that have been discussed in the group or the general culture of the group may have had an effect as well.

For instance, the use of ionic foot detox machines has been a frequent topic of discussion in the Mold Avoiders group, subsequent to one group member having found a relatively inexpensive machine that she believed compared well to much more expensive ones.

On the other hand, many mold avoiders following Erik Johnson’s approach have taken the position that scrupulous avoidance of mold toxins is important even if this results in stress, and this may have had an impact on the percentage of participants who cited stress reduction as having been important to them in the poll.

 

Avoiding gluten, dairy and other reactive foods was cited as having been of major important to many improved mold avoiders.

Mold Avoidance Survey

One limitation with regard to this sort of general poll is that it is difficult to determine whether items that did not come up as popular choices were ineffective or just had not been tried by very many people.

In order to probe into this more deeply, I took at look at the data for improved mold avoiders from the 2015 Mold Avoidance Survey.

Mold Avoidance Survey Description

 

This online survey was presented with an IRB through Northwestern University and included a total of 348 participants. The only limitation on participation was that people had previously done some kind of mold avoidance activity.

The survey included an optional question listing 68 different therapies that frequently had been cited in other reports as helpful to individuals with this sort of illness or that were brought up by individuals pre-testing the survey.

Individuals who participated in the survey were asked to rate the amount of activity that they had been able to do during the few months prior to beginning mold avoidance, using a 10-point activity level scale that I developed prior to launching the survey.

Mold Avoidance Survey Activity Scale

 

Participants also were asked to rate the amount of activity that they had been able to do in the recent few months, using this same 10-point scale.

For the analysis described in this article, I looked only at individuals who had improved by two or more levels on the scale and also who chose to answer the optional questions about their experiences with various therapies.

This encompassed a total of 137 participants.

In addition, previous data analysis and also my own observations suggested that individuals who start out more severely ill often benefit from different treatment approaches than those who start out as less severely ill.

I therefore segmented individuals into two separate groups, based on the answer that they gave to the question about how active they had been able to be prior to starting avoidance.

The “Less Severe” group included those who said that they had been able at minimum to leave the house a few times a week to shop or socialize (Levels 4-10) prior to starting mold avoidance. There were 46 individuals who fell into this group.

The “More Severe” group included those who said that they had been housebound or bedridden prior to starting mold avoidance (Levels 1-3). There were 91 individuals who fell into this group.

I then looked at each of these groups separately to determine  a) how likely participants were to have used each of the listed treatments  and  b) for those who had tried a particular treatment, how likely they were to have said that it had been critically important or very helpful for them.

For the likelihood of using the treatments, I divided the treatment responses into two categories:  40% or higher (“high trial”) and 39% or below (“low trial”).

For the likelihood of those who had tried the treatments saying that it had been very helpful or critically important to them, I divided the treatments into four categories: 70% or higher (“very high effectiveness”), 50-69% (“high effectiveness”), 30-49% (“moderate effectiveness”), and 29% or below (“low effectiveness”).

Note, of course, that these are actually measures only of perceived effectiveness rather than actual effectiveness.

This data is not telling us for sure whether participants actually were helped by these therapies. It only is telling us whether they stated on the survey that they believed they had been helped by them.

These results thus should not be taken as conclusive, and instead should be viewed as exploratory only.

 

Coffee enemas were rated highly in the survey by a high percentage of those improved mold avoiders who had tried them.

Treatment Categories

Dividing the treatments up by these two dimensions allowed the development of seven different treatment categories. For the sake of easy understanding and memorability, I gave each of these categories a nickname.

“Tried and True” treatments are those that had been tried by a high percentage of participants and that were rated as effective by a very high percentage of triers. These treatments thus might be considered to be the “standard” therapies at this time for those pursuing mold avoidance – that is, choices that many improved individuals believe have been helpful and that others thus may do well to consider.

“Usually Helpful” treatments are those that had been tried by a high percentage of participants and that were rated as effective by a high percentage of triers. Although they may not be effective for everyone pursuing mold avoidance, the likelihood that they will be found to be helpful seems pretty high.

“Up and Coming” treatments are those that had been tried by a low percentage of participants but that were rated as effective by a very high or high percentage of triers. Although there may not be enough cases to make conclusions that these treatments will be helpful for a majority of those pursuing mold avoidance, they are treatments that we may expect to hear more about in the future.

“Worth A Look” treatments are those that had been tried by a high perceived number of participants and that were rated as effective by a moderate number of triers. Although these treatments are popular, less than half of triers reported benefiting from them. They may be worth considering for many of those pursuing mold avoidance, especially after treatments with a higher success rate already have been explored.

“Specialty Treatments” are those with a low trial rate and a moderate perceived success rate among those who had tried them. These are treatments that have thus far received fairly limited trial and that have been rated as effective by less than half of those participants who have tried them. They may be helpful to a minority of individuals with particular needs or, perhaps, to those who are further along in the recovery process, however.

“Possibly Overused” treatments are those with a high trial rate and a low perceived success rate among those who had tried them. In some cases, these may be easily accessible treatments (such as certain foods) that don’t do all that much. In others, they may be treatments that have received a lot of community attention but do not seem to have panned out in a broad way. They still may be appropriate for certain individuals, however.

“Fringe Treatments” are those with a low trial rate and a low perceived success rate. While most of these treatments have been rated as helpful by a few people, the extent to which they have the potential of being of widespread benefit seems pretty low at this point.

Again, all of these evaluations are based only on the extent to which people who have tried the treatments have concluded that they have been helped by them.

It is certainly possible that in some cases, treatments that are rated as effective by these improved mold avoiders actually have not been of any real help to them.

It also is possible that some treatments that have not been rated very highly are more effective than these improved mold avoiders believe that they are.

 

Bodywork was rated as a particularly helpful treatment by many mold avoiders, especially those who started out less severely ill.

Less Severe Participants

Less severe participants consisted of the 46 individuals who were not bedridden or housebound prior to starting avoidance and who subsequently improved by at least two levels on the activity scale.

My guess would be that they have been somewhat less ill than the average participant in online mold groups and are more like the average patients seen by many mold-oriented doctors.

Following is a summary of how the 68 treatments included in the survey broke out into the different categories described above. More details are in the linked document.

Less Severe Improved Results by Treatment Category

 

“Tried and True” treatments with a high rate of trial and a very high rate of perceived effectiveness included:

* Environmental avoidance – avoiding probematic buildings, avoiding environmental chemicals, paying attention to cross-contamination of possessions

* Food avoidance – avoiding food toxins, avoiding gluten, avoiding non-organic food, avoiding mycotoxins, avoiding other problem foods

 

“Usually Helpful” treatments with a high rate of trial and a high rate of perceived effectiveness included:

* Avoidance – using air filters, showering and changing after exposures, avoiding locations with problematic outdoor air, avoiding toxins in tap water

* Detoxification –  sweating, non-prescription binders

* Drugs – antifungals, treatment of sinus fungi

* Food – extra electrolytes, large amounts of produce, Paleo diet

* Nutrients – Coenzyme Q10, magnesium, methylation/pyroluria supplements, nutritional IV’s, other B vitamins, Vitamin B12, Vitamin C

* Structural therapies – bodywork, chiropractor, stretching exercise

* Glutathione

* Probiotics

 

“Up and Coming” treatments with a low rate of trial and a very high or high rate of perceived effectiveness included:

* Drugs – bioidentical hormones, cholestyramine, low-dose naltrexone, MARCoNS treatment, marijuana, VIP, Welchol

* Specialty therapies – chlorine dioxide, coffee enemas, colonics, HBOT, ozone therapy

* Activated folate

 

“Worth a Look” treatments with a high rate of trial and a moderate rate of perceived effectiveness included:

* Supplements – Vitamin D, Omega 3 oils

* Active exercise

* Juicing or raw produce

 

“Specialty Treatments” with a low rate of trial and a moderate rate of perceived effectiveness included:

* Drugs – antibiotics, antiparasiticals, benzodiazapines, mast cell inhibitors

* Autoimmune Paleo diet

* Filtration mask

* Phosphatidylcholine

 

“Possibly Overused Treatments” with a high rate of trial and a low rate of perceived effectiveness included:

* Fermented foods

 

“Fringe Treatments” with a low rate of trial and a low rate of perceived effectiveness included:

* Drugs – anticonvulsants, antivirals, Desmopressin, immune suppressants

* Therapies – acupuncture, brain retraining, homeopathic remedies, neural therapy

* Environmental ozone

 

The Caribbean is a popular destination for those mold avoiders who believe the location effect has been important for them.

More Severe Participants

More severe participants consisted of the 91 individuals who were bedridden or housebound prior to starting avoidance and who subsequently improved by at least two levels on the activity scale.

Following is a summary of how the 68 treatments included in the survey broke out into the different categories described above. More details are in the linked document.

More Severe Improved Results by Treatment Category

 

“Tried and True” treatments with a high rate of trial and a very high level of perceived effectiveness included:

* Environmental avoidance – avoiding problematic buildings, paying attention to cross-contamination of possessions, showering and changing after exposures, avoiding locations with problematic outdoor air, avoiding environmental chemicals

* Food avoidance – avoiding food toxins, avoiding gluten, avoiding non-organic food, avoiding mycotoxins, avoiding other problem foods

* Omega 3 oil

 

“Usually Helpful” treatments with a high rate of trial and a high level of perceived effectiveness included:

* Avoidance – use of filtration mask, avoiding toxins in tap water

* Diet – autoimmune Paleo, juicing or raw produce, large amounts of produce, Paleo

* Nutrients – activated folate, magnesium, methylation/pyroluria supplements, nutritional IV’s

* Drugs – antifungals, cholestyramine

* Non-prescription binders

* Probiotics

* Sweating

 

“Up and Coming” treatments with a low rate of trial and a high rate of perceived effectiveness included:

* Drugs – Desmopressin, treatment of sinus fungi, MARCoNS treatment, VIP

* Therapies – chlorine dioxide, coffee enemas, HBOT, neural therapy, ozone therapy

* Phosphatidylcholine

 

“Worth a Look” treatments with a high rate of trial and a moderate rate of perceived effectiveness included:

* Nutrients –  Coenzyme Q10, Vitamin B12, Vitamin C, Vitamin D

* Natural remedies – pathogen herbs, homeopathics

* Therapies – bodywork, chiropractor

* Exercise – active, stretching

* Air filters

 

“Specialty Treatments” with a low level of trial and a moderate level of perceived effectiveness included:

* Drugs – antiparasiticals, antivirals, benzodiazapines, bioidentical hormones, low-dose naltrexone, Welchol

* Brain retraining

* Chelation

* Colonics

 

“Possibly Overused Treatments” with a high level of trial and a low level of perceived effectiveness included:

* Acupuncture

* Antibiotics

* Fermented foods

* Glutathione

 

“Fringe Treatments” with a low level of trial and a low level of perceived effectiveness included:

* Drugs – anticonvulsants, immune suppressants, marijuana, mast cell inhibitors

* Environmental ozone

 

“Juicing, green smoothies or raw produce” was a well-regarded treatment by many improved mold avoiders.

More Severe vs. Less Severe

Next, I took a look at whether improved survey participants who had started out more severely ill benefited from any of the treatments to a greater or lesser extent than did improved survey participants who had started out less severely ill.

I used a two-sample Z test to determine if the any of the differences were significant.

The comparisons are summarized in this PDF:

More vs. Less Severe Survey Participants

 

Following are the treatments that were cited as more helpful by improved participants who were more severely ill prior to avoidance than they were by improved participants who were less severely ill prior to avoidance:

* Staying away from locations with problematic outdoor air (75% vs. 58%, p<.10)

* Showering and changing clothes after exposures (73% vs 51% p<.05)

* Avoiding toxins in tap water (65% vs. 57%, p<.10)

* Antiviral drugs (40% vs. 0%, p<.001)

* Treatment of MARCoNS sinus infections (90% vs. 63%, p<.10)

* Omega 3 oils such as flax or fish (70% vs. 48%, p<.05)

* Autoimmune Paleo diet (66% vs. 37%, p<.05)

 

Following are the treatments that were cited as more helpful by improved participants who were less severely ill prior to avoidance than they were by improved participants who were more severely ill prior to avoidance:

* Glutathione (52% vs. 26%, p<05)

* Vitamin C (65% vs. 41%, p<.05)

* Coenzyme Q10 (56% vs. 34%, p<.10)

* Gluten-free diet (89% vs. 71% p<.05)

 

Following are some treatments that were used more frequently by improved patients who were more severely ill prior to avoidance than by improved patients who were less severely ill prior to avoidance:

* Cholestyramine (52% vs. 37%, p<.10)

* Non-prescription intestinal binders (59% vs. 43%, p<.10)

* Antiviral drugs (27% vs. 9%, p<.05)

* Antibiotic drugs (56% vs. 37%, p<.05)

* Antiparasitical drugs (34% vs. 17%, p<05)

* Pathogen herbs (67% vs. 48%, p<.05)

* Bioidentical hormones (31% vs 11%, p<.01)

* Low-dose naltrexone (31% vs. 11%, p<.01)

* Marijuana (31% vs. 13%, p<.05)

* Immune suppressant drugs (12% vs. 2%, p<.05)

* Activated folate (53% vs. 35%, p<.05)

* Autoimmune Paleo diet (55% vs. 35%, p<.05)

* Low-mycotoxin diet (64% vs. 43%, p<.05)

* Acupuncture (53% vs. 24%, p<.01)

* Hyperbaric oxygen therapy (13% vs. 4%, p<.10)

* Filtration mask (57% vs. 39%, p<.05)

* Brain retraining or amygdala retraining (23% vs. 9%, p<.05)

 

In addition, improved participants who started off as more severely ill were more likely than improved participants who started off as less severely ill to have done the following avoidance activities:

* Moved out of a house with a major toxic mold problem (75% vs. 54%, p<.01)

* Went on a sabbatical away from a suspect home and possessions to see if it made a difference (45% vs. 30%, p<.10)

* Moved from a location suspected or known to have problematic toxins in the outdoor air to a location that seemed that it might be better (53% vs. 34%, p<.05)

* Periodically spend time in relatively pristine locations to get clear of toxic exposures (57% vs. 35%, p<.05)

 

These more severely ill individuals also were more likely to state that they were extremely or very good at knowing when they were being exposed to toxins that would turn out to be a problem for them (67% vs. 52%, p<.10)

 

On the other hand, improved patients who were less severely ill prior to avoidance were more likely than those who were more ill to have tried the following therapy

* B vitamins other than activated folate or B12 (54% vs. 31%, p<.01)

 

Many improved mold avoiders have cited soaking in mineral springs or Epsom salts baths as having been especially helpful to them. (Pictured: Mercey Hot Springs in California. Photo credit: J. Kat Photo.)

Improved vs. Not Improved

In order to consider further the extent to which the use of any these treatments was related to the improvements that these participants had experienced, I compared the trial rates for these improved individuals with the trial rates of the other survey participants (that is, those who improved less than two levels on the activity scale subsequent to starting mold avoidance).

Since results did not vary to a very large extent between those participants who were more severely ill and less severely ill prior to avoidance, I combined all participants for this analysis.

This provided a total of 137 individuals in the “Improved” category and 196 individuals in the “Not Improved” category.

I then looked at the percentage of participants who had tried each of the treatments from each group, using a two-sample Z test to determine if the any of the differences were significant.

The results are summarized in this PDF.

Improved vs. Not Improved

 

Compared to those participants who had not improved very much or at all, those who reported significant improvements were much more likely to have tried the following:

* Going on a sabbatical away from a suspect home and possessions to see if it made a difference (40% vs. 23%, p<.001)

* When moving from a house with a toxic mold problem, disposing of some or all belongings (72% vs. 56%, p<.01)

* Antibiotic drugs (50% vs. 31%, p<.001)

* Desmopressin (8% vs. 1%, p<.01)

* Medical ozone therapy (8% vs. 2%, p<.01)

 

They also were somewhat more likely to have tried these therapies:

* Staying out of problematic buildings (99% vs. 94%, p<.05)

* Paying attention to cross-contamination of possessions (91% vs. 81%, p<.05)

*  Using their own reactions to determine whether they are being exposed to harmful toxins (90% vs. 81%, p<.05)

* Periodically spending time in relatively pristine places in order to get clear of toxic exposures (50% vs. 29%, p<.05)

* Moved from a location that they suspected or knew had problematic toxins in the outdoor air to a location that seemed it might be better (46% vs. 36%, p<.10)

*  Moved out of a house with a major toxic mold problem (69% vs. 59%, p<.10)

* Routinely take a shower and change clothes as soon as possible after being exposed to problematic mold toxins (63% vs. 53%, p<.10)

* Sweating through sauna, hot springs, heat, exercise or other means (47% vs. 38%, p<.10)

* Cholestyramine (47% vs. 38%, p<.10)

* Treatment of MARCoNS sinus infections (20% vs. 13%, p<.10)

* Bodywork such as massage, reflexology or craniosacral (67% vs. 56%, p<.05)

 

In addition, participants who had improved were significantly more likely to state that they were extremely good or very good at immediately sensing or guessing whether they were being exposed to environmental mold toxins that would turn out to be a problem for them (61% vs. 50%, p<.05).

 

On the other hand, those who had improved were much less likely to have tried these therapies:

* B vitamins other than B12 or activated folate (39% vs. 66%, p<.001)

* Omega 3 oils such as fish or flax oil (58% vs. 74%, p<.001)

* Gluten-free diet (77% vs. 85%, p<.01)

 

They were somewhat less likely to have tried these therapies:

* Probiotic supplements (78% vs. 85%, p<.10)

* Vitamin B12 (66% vs. 75%, p<.10)

* Vitamin C (72% vs. 80%, p<.10)

 

I also looked at whether people who were significantly improved were more or less likely to state that they had benefited from the various treatments than those who were not significantly improved.

Improved vs. Not Improved – Benefited

 

Those who were significantly improved were more likely to say they had benefited from the following treatments:

* Coffee enemas (74% vs. 44%, p<.05)

* Chlorine dioxide (75% vs. 25%, p<.05)

* VIP (71% vs. 9% p<.001)

* Brain retraining (36% vs. 16%, p<.10)

 

Additional treatments that were close to significance on this measure (p<.20) included cholestyramine, non-prescription binders, antifungal drugs, low-dose naltrexone, immune suppressants, probiotics, extra electrolytes, low-mycotoxin diet and hyperbaric oxygen therapy.

 

Those who were not significantly improved were more likely to say they had benefited from the following treatment:

* Environmental air filters (62% vs. 48%, p<.05)

 

For those interested, here are reports comparing participants who were vs. were not substantially improved, compiled separately for more severe and less severe illness levels.

More Severe – Improved vs. Not Improved

Less Severe – Improved vs. Not Improved

 

While many mold-injured people are unable to tolerate fermented foods at least at first, some improved mold avoiders report that they have been especially helpful for them.

General Observations

Here is a list of some general observations related to the findings reported here from the Mold Avoidance Survey.

 

Environmental Avoidance:

* Improved participants as a whole reported that several environmental avoidance activities – avoiding problematic buildings, avoiding environmental chemicals, and paying attention to cross-contaminated possessions – had been more helpful to them than any non-avoidance treatments mentioned on the survey.

* Improved participants who started off as severely ill also listed avoiding problematic locations and decontaminating after exposures as more important than any non-avoidance treatments.

* A high percentage of improved participants cited avoiding toxic tap water as having been very helpful to them.

* Air filters (though a popular treatment across the board) were perceived as especially helpful by improved participants who started off as less severely ill. On the other hand, improved participants who started off more severely ill were especially likely to have resorted to the use of filtration masks.

* Improved participants who started off as more severely ill were especially likely to report having benefited from activities involving more scrupulous mold avoidance, including avoiding problematic locations, avoiding problematic tap water, and decontaminating after exposures. They also were especially likely to have moved from a house with a toxic mold problem; to have moved from a suspect location to a better one; and to periodically spend time in pristine places.

* Survey participants who had improved substantially were much more likely to say that they had gone on a mold avoidance sabbatical than were participants who had not improved substantially.

* Survey participants who had improved substantially also were especially likely to have disposed of some or all of their possessions after moving from a bad environment; to have moved from a suspect location to a better one; to use their own reactions to determine when they were being exposed to problematic toxins; to routinely decontaminate after exposures; and to periodically spend time in relatively pristine places.

* In addition, participants who had improved substantially were especially likely to state that staying out of problematic buildings and paying attention to cross-contamination of possessions had been very helpful or critically important for them.

* Being skilled at mold avoidance (operationalized by being extremely or very good at sensing or guessing when exposures that would turn out to be harmful were occurring) also was correlated with having experienced significant improvements.

 

Diet:

* Improved participants rated avoidance of toxic contaminants in foods as well as avoidance of reactive foods almost as highly as avoidance of environmental toxins. Avoiding chemical toxicity, mycotoxins, gluten, other reactive foods and toxic foods in general all were rated as having been critically important or very helpful by a majority of participants.

* Other dietary approaches rated as very helpful by a high percentage of improved participants included the Paleo or autoimmune Paleo diet; juicing or raw produce; large amounts of produce; and extra electrolytes.

* Only about a quarter of improved participants reported having benefited much from fermented foods.

* Improved participants who started off more severely ill were more likely to have tried the autoimmune Paleo diet and also more likely to report having benefited from it.

* Improved participants who started off less severely ill were more likely to report having benefited from a straight gluten-free diet.

 

Detoxifiction

* Sweating, non-prescription binders, cholestyramine, methylation-type supplements and nutritional IV’s were reported as popular and well-regarded detoxification choices by improved participants.

* Although relatively few improved participants who started off as less severely ill had tried cholestyramine, most of those who had tried it rated it favorably.

* Although only a minority of improved participants (about 25%) had tried coffee enemas, a very high percentage of those who had tried them rated them favorably.

* Although the total number of triers was low, Welchol appears to be perceived as more helpful by improved participants who started off as less severely ill.

* Improved participants were a little more likely than non-improved participants to have tried cholestyramine and sweating therapies.

 

Drugs:

* Antifungal drugs (both systemic and intranasal) were popular and well-rated by improved participants as a whole.

* MARCoNS treatment and VIP both had limited numbers of triers but were well-rated by those improved participants who had tried them

* Desmopressin was well-rated by the small number of previously severe improved participants who had tried it.

* Low-dose naltrexone, marijuana and bioidentical hormones were regarded highly by many of the less severe improved participants who had tried them.

* Improved participants who had been more severely ill were more likely to have tried a wide variety of drugs than  were improved participants who had been less severely ill. With few exceptions, those less severe improved participants who had tried various drugs reported benefiting from them just as much as the more severe improved participants did, however.

* While antibiotics had been used by many improved participants, relatively few of these individuals stated that they thought that the drugs had been very helpful.

* On the other hand, significantly improved participants were much more likely to have tried antibiotics than were those participants who had not improved significantly.

* Significantly improved participants also were especially likely to have tried MARCoNS treatment and Desmopressin.

* Other drugs mentioned (including benzodiazapines, anticonvulsants, immune suppressants, mast cell inhibitors and Ampligen) all had low trial rates and low ratings of having been helpful among those improved participants who had tried them.

* Consistent with the contention of the Shoemaker protocol, VIP seems to be more helpful for individuals who already have improved to some extent than it is for those who have yet to improve. Other therapies that also fell into this category included coffee enemas, chlorine dioxide and brain retraining.

 

Supplements:

* Supplements related to detoxification or methylation (including B12 vitamins and activated folate) had received wide trial and were reported as being very helpful to most of those improved participants who had tried them.

* Many improved participants who had started off as less severely ill reported being especially helped by glutathione, Vitamin C, coenzyme Q10 and other B vitamins.

* Improved participants who started off as more severely ill were especially likely to report being helped by omega 3 oils.

* Although only a small percentage of improved participants had tried phosphatidylcholine, a high percentage of those who started off as severely ill and who had tried it reported that it had been helpful to them.

* Improved participants who started off as less severely ill were relatively unlikely to have tried activated folate, but those who had tried it tended to report it as having been very helpful.

* Significantly improved participants were less likely to report having tried several supplements than were those those who had not significantly improved. These supplements were omega 3 oils and B vitamins (other than folate or B12), and to a lesser extent Vitamin C and Vitamin B12.

* Probiotics and magnesium were popular and well-rated treatments across the board.

* Vitamin D, homeopathics, and pathogen herbs were somewhat less popular and less well-rated, but still viewed favorably by many improved participants.

 

Other Therapies:

* Bodywork, stretching exercise, and chiropractor treatments were frequently used and highly-rated therapies, especially by improved participants who started off at a less severe level of illness. They were a little less highly rated by improved participants who started off at a more severe level of illness.

* Oxidative therapies – including ozone therapy, HBOT and chlorine dioxide – were rated highly among the small percentage of participants who had tried them.

* Substantial minorities of improved participants reported that both active exercise and stretching exercise had been very helpful for them.

* Neural therapy was highly rated among the small percentage of improved participants who started off at a severe level of illness and who had tried it.

* HBOT, acupuncture and brain retraining were rated more highly among more severe improved participants than less severe improved participants.

* Bodywork and medical ozone therapy were more frequently used among significantly improved participants than among participants who had not improved significantly.

 

women playing yoga at beachside on sunset

Stretching exercise such as yoga was rated highly by many improved mold avoiders, especially those who started out as less severely ill.

Getting Well – Less Severe

For the most part, survey participants who started off with less severe illness and who then recovered a substantial amount of their health said that did so primarily with treatments that are attainable without the help of a medical professional.

Of all the therapies mentioned in the survey, the ones that were cited as helpful by the largest numbers of these individuals were avoidance of problematic buildings, paying attention to cross-contamination of possessions, avoidance of environmental chemicals, and avoidance of various problematic foods.

Although other mold avoidance activities – including avoiding problematic locations, avoiding problematic tap water, using air filters, and decontaminating after exposures – also were frequently cited, they appear to have been of secondary importance to this group.

Many of the other non-prescription treatments cited as helpful by large numbers of these participants were associated with detoxification. These included sweating; non-prescription binders; methylation-related supplements; and various structural therapies (such as bodywork, stretching and use of a chiropractor) that seem likely to increase lymph flow.

In addition to avoiding problem foods, these individuals often reported having been helped by extra dietary electrolytes, large amounts of produce and the Paleo diet.

Getting fungal infections under control also seems to have been perceived as important by many of these individuals. The only prescription drugs to come up as top-rated were antifungal drugs (both for systemic and sinus infections). Probiotics also were cited as important.

A few supplements – glutathione, vitamin C, coenzyme Q10 and magnesium – were reported as helpful by many of these participants.

Although trial rates were low, a high percentage of those individuals who had tried the drugs often prescribed by doctors specializing in mold-related illness (including cholestyramine, Welchol, MARCoNS treatment, VIP and low-dose naltrexone) reported that those drugs had been of value to them.

Bioidentical hormones and marijuana also were rated highly by many of the participants in this group who had tried them.

In addition, high percentages of those who had tried certain other therapies associated with removing toxins from the gut (coffee enemas and colonics) as well as certain oxidative therapies (HBOT, ozone therapy, chlorine dioxide) reported having been helped by them.

A final treatment that was highly rated by a majority of these individuals but that had been tried by a relatively low percentage was activated folate (methylfolate).

 

3-pollution-mask-1-teripeng (2)

Filtration masks were cited as very helpful treatments by more than half of the previously severely ill survey participants who had tried them. (Photo credit: The Independent.)

Getting Well – More Severe

Perhaps the most noteworthy observation with regard to participants who started off more severely ill is that they reported being especially helped by more scrupulous mold avoidance activities.

Like those individuals who started out less severely ill, these individuals reported benefiting from avoiding problematic buildings and environmental chemicals as well as from paying attention to cross-contamination of possessions.

However, they also reported benefiting to a particularly large extent from other avoidance activities, including staying away from problematic locations, decontaminating after exposures, and avoiding toxic tap water.

Accordingly, they were more likely to state that they had been on a mold avoidance sabbatical; that they had moved from a problematic location to a better one; that they periodically spent time in pristine locations; and that they were especially good at knowing when they were being exposed to toxins that would turn out to be a problem for them.

A fairly high percentage also said they had used filtration masks and found them to be helpful.

Apart from the need for more scrupulous avoidance, these formerly severe participants seemed to benefit from pretty much all the same therapies as those who started out as less severely ill.

They reported benefiting from Paleo-type diets with substantial amounts of produce (including raw produce) and that were low in toxins (including both mycotoxins and manmade chemicals).

While these formerly severe patients reported that avoiding reactive foods was critical, they were less likely to report having benefited very much from just avoiding gluten. Instead, an autoimmune Paleo diet was reported by many as having been especially helpful.

While a high percentage of these individuals said they had tried cholestyramine and benefited from it, they reported benefiting from non-prescription binders just as much.

Sweating, IV nutrition and methylation supplements also were popular and well-regarded detoxification activities among these participants.

These individuals were more likely to report benefiting from MARCoNS treatment than were those participants who had been less severely ill.

Those who had tried the treatments also reported benefiting from antifungal drugs (systemic and intranasal); Desmopressin; and VIP.

In terms of supplements, compared to less severely ill participants they were more likely to report benefiting from omega 3 oils and phosphatidylcholine.  They were a little less likely to report benefiting from vitamin C, glutathione and Coenzyme Q10.

Several additional therapies were rated very highly by the participants in this category who had tried them: coffee enemas, HBOT, ozone therapy, chlorine dioxide and neural therapy.

Air filters, bodywork, acupuncture, active or stretching exercise, and brain retraining were additional treatments found to be helpful by substantial minorities of these participants.

 

resized_Sauna

Sweating through sauna, exercise, hot weather or other means was cited as a helpful treatment by high percentages of improved mold avoiders.

Additional Thoughts

Following are some purely personal thoughts about the results of the survey and the mold groups poll.

 

Mold Avoidance:

These research findings seem consistent with my own ongoing proposal that mold avoidance that goes beyond just staying out of moldy buildings and discarding porous possessions from those buildings can be an important factor in helping individuals with mold-related illness – and especially those with a severe version of this type of illness – to make improvements.

Very high percentages of these individuals stated that they had been greatly helped by avoiding problematic locations, by decontaminating after exposures and by avoiding toxic tap water, as well as by the more conventional activities of avoiding moldy buildings and paying attention to cross-contamination of possessions. Avoiding environmental chemicals was reported by large numbers as having been important as well.

Having pursued more scrupulous avoidance also was significantly associated with increased likelihood of significant improvements in the survey.

The biggest avoidance-related effect of all was the one between significant improvements and having gone on a mold avoidance sabbatical.

The sabbatical concept is at the heart of the mold avoidance approach proposed by Erik Johnson and described in the book A Beginner’s Guide to Mold Avoidance.

The results of this survey project – as well as the reports of new mold avoiders pursuing the sabbatical concept in the Mold Avoiders group – suggest that the sabbatical concept may have some merit to it.

Improved survey participants also were more likely to have paid particular attention to location effects and to cross-contamination effects, and to decontaminate after exposures, as well as to have avoided moldy buildings.

Considering the skepticism that certain mold doctors have expressed with regard to the idea that location may have any kind of effect at all, the fact that avoidance activities involving locations came up as being related to improvements in functioning was of particular interest to me.

Of course, correlation is not the same as causation and a survey of this sort is not the same as a controlled study. (Though doing a placebo-controlled study involving location would be quite the trick to pull off!)

Still, with hundreds of mold avoiders who have improved substantially from severe illness insisting that location does make a big difference for them, and with the suggestion in these results that focusing on location does appear to be related to actual improvements, my hope is that perhaps more doctors will start to take the issue of locations a bit more seriously in the near future.

 

Food:

Another interesting though not especially surprising finding is that improved participants in both the mold avoidance survey and the mold groups poll reported that avoidance of problematic foods had been almost as important for them as avoidance of environmental mold.

High percentages of participants reported benefiting from avoidance of chemical toxicity (including glyphosate), mycotoxins, gluten and other reactive foods.

Participants also reported benefiting from eating specific kinds of foods: a quality whole-foods diet, leaning toward Paleo or autoimmune Paleo, with an emphasis on large amounts of produce (including raw produce) and some extra electrolytes.

Fermented foods were rated as having been helpful by less than a quarter of participants. Anecdotally, many mold illness patients report reacting to the non-toxic fungi that may be present in fermented foods. A few scattered cases even suggest that it might be the case that pathogenic fungi or bacteria can be present in some fermented foods, causing those who eat them to get permanently worse.

Thus, although fermented foods are an integral part of the GAPS diet and other autoimmune Paleo type diets that were rated highly by many participants, approaching these foods with care may be worthwhile.

Note that while many participants perceived diet to have been important to them, specific food-related treatments did not come up in the survey results as significant predictors of whether participants actually were likely to have improved significantly on the activity scale.

It thus is possible that food choices are less important with regard to moving toward recovery from this disease than many people seem to think.

Personally, I would venture that it’s safe to say that a “quality whole-foods diet” (the most popular food-related choice in the mold groups poll) is going to be helpful for just about anybody and especially for those recovering from a serious illness. A diet with ample produce also seems to be a good thing for just about anybody.

Beyond that, many individuals report that once they get clear of environmental mold, their ability to tolerate and benefit from a wide range of foods tends to increase. It thus is possible that while food avoidance may be important for those just starting out with avoidance, it may become increasingly less important as time goes on.

Specific avoidance of glyphosate (spontaneously reported as having been very important by nearly one-fifth of mold group poll participants) was not mentioned on the survey, however.

Considering that this chemical is increasingly reported to have a negative effect on the microbiome, it is possible that avoiding it might have a noticeable effect on the likelihood of individuals to improve even if avoidance of chemicals in general does not. That would be interesting to study in future research.

 

Detoxification:

While  cholestyramine was a treatment that many improved patients reported had been helpful for them, there is little in these results to suggest that other types of detoxification therapies are not going to be useful for certain circumstances or perhaps at least as helpful overall.

Sweating, non-prescription binders, coffee enemas, nutritional IV’s and methylation-type supplements all came up quite well in both the survey and the mold groups poll.

Chelation and colonics also had substantial minorities of participants rate them favorably.

 

Pathogens:

How aggressively to pursue treatment of pathogens has been a major point of dispute with regard to this type of illness. For example, while some types of physicians (including most “Lyme literate” doctors, some ME/CFS doctors and a few mold doctors) have been aggressive with regard to prescribing prescription anti-pathogen medications, others have expressed skepticism about whether this ultimately will lead to resistance or cause other negative effects.

One intriguing finding from the survey was with regard to antibiotics. While many improved participants said that they had tried antibiotics, only a small percentage of these ventured to say that they had been helped to a significant extent by them.

(I personally took doxycycline for several months during my own first year of mold avoidance but marked on the survey that I was unsure whether it had been of any help to me, for instance.)

It thus is interesting to note that having taken antibiotics was just as strong of a predictor with regard to whether survey participants had experienced substantial improvements as was having gone on a mold avoidance sabbatical.

Although, again, correlation is not the same as causation, the possibility that antibiotic usage may be significantly helpful – in this case, more helpful than the people who tried it seem to think it was – seems like it may be worth considering.

The use of intranasal antibiotics for MARCoNS treatment also came up as marginally significantly correlated with survey participant improvements, thus providing further evidence to suggest that it is possible that at least in some cases, antibiotics may be particularly helpful in this population.

Antifungal drugs (administered both systemically and intrnasally) came up as highly rated by many participants but without any correlation to actual stated improvements.

Drugs to address other kinds of pathogens (such as viruses or parasites) were less highly regarded and also not significantly correlated with improvements.

 

Drugs:

Very frequently, severely ill individuals who successfully pursue mold avoidance are able to eliminate some or even all of the prescription medications that they previously found to be necessary.

That seems consistent with the fact that other than prescription toxin binders and prescription pathogen killers, participants in both the mold avoidance survey and the mold groups poll seemed to have little use for prescription drugs.

Desmopressin was highly rated by the small percentage of improved individuals who had stared out severely ill and who had tried it, while low-dose naltrexone and marijuana got a relatively high number of positive reports from those who had started out less severely ill.

The hormone Vasoactive Intestinal Peptide (VIP) also was well-rated by the small numbers of individuals who had tried it. In addition, bioidentical hormones in general also were well-rated by those improved individuals who started out as less severely ill.

Other than this, however, none of the drugs mentioned generated much of a response, and virtually none of the survey respondents mentioned other drugs in their spontaneous comments of additional treatments that had been helpful to them.

 

Supplements:

With regard to supplements, the most perplexing finding was that even though B vitamins (other than folate and B12) and omega 3 oils were perceived as helpful supplements by many participants and often are recommended by practitioners, they came up as very strongly inversely correlated with participants having experienced significant improvements in the mold avoidance survey.

Whether this could be a real phenomenon rather than a statistical artifact is unclear.

For instance, it is my understanding that Shoemaker doctors often suggest fish oil to those patients who cannot tolerate cholestyramine. If not tolerating cholestyramine is correlated with not getting better from the illness with or without the fish oil, then conceivably that could be at least in part responsible for the phenomenon observed.

On the other hand, conceivably fish oil frequently could be contaminated with something problematic, such as cyanobacteria toxins, mold toxins, heavy metals or solvents.

Another thought that comes to mind is that B complex vitamins are usually grown in yeast. Perhaps that has a negative effect on sufferers of mold-related illness.

I actually have personally found that my body typically recoils from both of these substances, and a number of people in the Mold Avoiders group said the same thing.

So perhaps these are truly problematic after all. It would be interesting to do a more systematic trial to attempt to find out.

I also think it was interesting that several supplements (glutathione, vitamin C and CoQ10) seemed to be more helpful for those improved individuals who had started out at a less severe level of illness, and that those who started out as more severely ill seemed to be more likely to benefit from phosphatidylcholine.

I personally have have not found glutathione or CoQ10 to seem at all helpful to me, and vitamin C only has seemed to be helpful in IV form.

Substantial numbers of survey participants reported benefiting from magnesium, vitamin D, probiotics and pathogen-killing herbs, but none of these came out as being correlated with improvements.

It would be interesting to look at specific probiotic strains or specific herbal preparations in future research, however.

 

Holistic Therapies:

Oxidative therapies (including hyperbaric oxygen, ozone therapy and chlorine dioxide) were perceived as helpful by high percentages of those individuals who had tried them, and ozone therapy came up as correlated with improvements.

Since all of these are considered “controversial” by the conventional medical establishment, it seems unlikely that we will see many physicians or other healthcare practitioners focusing on them at any time in the near future. Nonetheless, their perceived and perhaps actual effectiveness may mean that patient interest in them is likely to remain high.

About 40% of more severe participants and about 50% of less severe participants stated that exercise (active and stretching) had been critically important or very helpful for them. In many cases, those who are successfully avoiding mold have regained their ability to exercise, and apparently many of these individuals feel that this has been an important part of their recoveries.

Bodywork and chiropractor treatments both were reported to be helpful by many participants, especially those who were less severely ill, and having tried bodywork was correlated with improvements.

Some of the more severe participants reported having benefited from acupuncture and neural therapy.

All of these structural type treatments seem to help with lymph flow, and perhaps especially with flow through the neurological lymphatic system discovered only last year. In particular those with fibromyalgia-type issues tend to have impeded drainage and benefit from these kinds of therapies.

Brain retraining programs were used more by severely ill patients and were inversely correlated with improvements, presumably because patients who were dissatisfied with the progress that they were making with other therapies were more likely to turn to them.

 

Additional Therapies:

Several other additional therapies not included on the 2015 Mold Avoidance Survey were put forth by substantial numbers of individuals in the mold groups poll.

One was reducing stress, with a full 39 percent of mold group participants saying that this had been critically important or of major benefit to them. This is a therapy that appears to become less and less critical as people become better at avoidance, but that obviously may be perceived as very important by those who are not very far along in the recovery process.

The second was Epsom salt baths, with about 29 percent of mold group participants saying that this treatment had been critically important or of major benefit to them. This is a therapy that may have a number of benefits (including delivering magnesium and sulfate to the system through the skin) and thus is not fully covered in the item about sweating mentioned in the Mold Avoidance Survey.

A third popular treatment was essential oils, with nearly 25 percent of mold group participants saying that it had been critically important or of major benefit to them. Looking at which oils are considered to be the most helpful and how they may be most effectively used may be an interesting topic to consider in future research.

Fourth, ionic detox foot baths were mentioned by 10 percent of mold group participants. These foot baths have received many positive comments from members of the Mold Avoiders group during the past year.

Finally, non-specified “vitamins and supplements” were mentioned by 51% of participants, and non-specified “minerals” were mentioned by 11% of participants.

Although these therapies were not listed on the completed Mold Avoidance Survey, they definitely will be included in the follow-up version (which likely will be conducted later this year).

 

Improvement Suggestions:

Based on the results of this survey as well as my general observations, I can see three ways in which the medical community may be able to better serve those individuals with mold-related illness.

One factor of note is that while individuals who started off less severely ill appeared to benefit substantially from a number of treatments prescribed by physicians, only a small percentage of these individuals actually had tried the treatments.

For instance, while about half of the more severe patients had tried cholestyramine, only about one-third of the less severe patients had tried it.

Nonetheless, both groups appeared to benefit from it approximately equally (with about two-thirds of those who had tried the drug stating that it had been critically important or very helpful).

Other drugs that had very low trial rates (less than 20%) among less severe participants but that were reported as having been very helpful by the majority of those who had tried them included VIP, Welchol, low-dose naltrexone, bioidentical hormones and marijuana.

(Systemic and intranasal antifungal drugs also were reported as being helpful by most of those less severe patients who had tried them, but trial rates were much larger for those drugs.)

My guess on this would be that even if individuals want to try these drugs, in many cases they are effectively prevented from doing so due to the shortage of clinicians who are willing to provide them, the long waiting lists of most of those clinicians who do provide them, and their inability or unwillingness to pay for the extensive medical testing required.

For instance, cholestyramine is a drug that is by and large considered to be relatively safe. That being the case, it does not seem especially optimal for less severely ill individuals who know that they are hyperreactive to mold to have to wait a year to see a Shoemaker doctor, and then to pay nearly $1000 for a two-hour consultation, plus additional fees for lab testing and a follow-up consultation, just to be able to try this drug.

A question for the medical community thus seems to be how to make changes that will allow these individuals to obtain the pharmaceuticals that may be helpful to them in a reasonably time-efficient and cost-efficient manner.

On the other hand, these results seem to suggest that for more severe patients, the real key to their improvements is effective mold avoidance, including methods that go beyond what many mold specialists are likely to recommend to them.

Insofar as these individuals do engage in mold avoidance that is scrupulous enough to compensate for their own high levels of reactivity, many medical treatments then may be of help to them.

Unfortunately, unless they have become part of the online mold illness community, many severely ill individuals are unaware of the benefits of this type of more scrupulous avoidance.

While it is the case that some clinicians are starting to bring up to their patients topics such as mold sabbaticals, location effects and decontamination, many more are not.

Hopefully this will start to change in the near future.

Finally, even when severely ill patients are effectively avoiding mold, they tend to have complex illness issues that are unlikely to be optimally treated through standard clinician protocols.

While such protocols may allow efficient treatment of patients who are less severely ill, those who start out at a more severe level of illness often do not tolerate or benefit from treatment mainstays such as prescription binders or glutathione, and instead may benefit from more customized or innovative approaches.

Fortunately, there are some doctors out there who do have an interest in these patients and who have been helpful to many of them. Still, more such doctors are needed to treat the very large numbers of individuals with severe mold-related illness symptoms.

Hopefully, we will be seeing more doctors begin to focus on these individuals in the near future. Because, as I have found from my own efforts with the Mold Avoiders group, it is very rewarding to see them make progress!

 

Essential oils

Essential oils were cited as having been an important treatment by about a quarter of participants in the mold groups poll.

Treatment Glossary

Following are brief descriptions of some of the therapies mentioned in this article.

Activated charcoal. A natural substance with a negative charge that sticks to a wide variety of substances and carries them out of the body through the digestive tract.

Activated folate. Methylfolate, folinic acid or other folate supplements that some people’s bodies can use more easily they can folic acid.

Active exercise. Walking, biking, swimming or other exercise involving sustained amounts of motion.

Acupuncture. A technique used in Traditional Chinese Medicine in which needles are placed in various points in the body to stimulate energy flow and promote health.

Antibiotic drugs. Drugs that are used to kill borrelia (Lyme) and various other bacterial and mycobacterial infections in the body.

Anticonvulsants. Drugs such as Lyrica or Lamictal, which are used by some doctors for fibromyalgia, seizures, mood issues or other issues that may be related to mold illness.

Antifungal drugs. Drugs that target candida, aspergillosis or other fungal infections that may be present in the intestinal tract or in other parts of the body.

Antiparasitical drugs. Drugs with the potential of killing worms, flukes or microbial parasites that may be residing in the digestive tract or in other parts of the body.

Antiviral drugs. Drugs such as Valcyte, Valtrex and Famvir, which have the ability to help to address herpes family viruses.

Autoimmune Paleo diet. GAPS, SCD, Body Ecology or other similar diets designed to improve the microbiome of the gut and promote better health.

Bentonite clay. A natural clay with a negative charge that can serve to stick to heavy metals and certain other toxins and to carry them out of the body through the digestive tract.

Benzodiazapines. Tranquilizer drugs such as Klonopin, Valium or Xanax that are said to have the ability to protect the brains of mammals from biotoxin exposures and that are said by some doctors to have the potential of being useful in ME/CFS or related conditions, especially for helping with unrefreshing sleep issues.

Bioidentical hormones. Supplemental replacement hormones (such as testosterone, cortisol, estrogen, progesterone, T3 or others) that are said to be identical in chemical composition to the ones made naturally by the body.

Bodywork. Massage, reflexology, craniosacral or other therapies designed to stimulate flow of blood, lymphatic fluid and energy throughout the body.

Brain retraining (or amygdala retraining). Programs that posit that the cause for environmental reactivities is that the amygdala is overreacting to environmental stimuli and that encouraging it to calm down can lead to improved wellness. Examples include Annie Hopper’s Dynamic Neural Retraining System and the Ashtok Gupta Programme.

Bulletproof diet. A diet created by Bulletproof Executive founder and mold illness survivor Dave Asprey. It includes high amounts of healthy fats and vegetables; moderate amounts of animal protein; low amounts of carbohydrates and grains; and low levels of toxicity (including mycotoxins).

Chiropractor. Medical professionals focusing on the diagnosis and treatment of mechanical disorders of the musculoskeletal system.

Chlorine dioxide. A controversial treatment in which this chemical substance is used orally or in enemas, usually with a primary goal of killing pathogens.

CholestePure. A product containing phytoesterols and manufactured by Pure Encapsulations.

Cholestyramine (CSM). A prescription cholesterol-lowering medication with a very strong positive charge, said to have the ability to stick to at least some types of mold toxins and other biotoxins to carry them out of the body through the digestive tract.

Coenzyme Q10. A natural antioxidant made by the body, also available in supplement form.

Coffee enemas. A treatment in which the insertion of a cup or more of prepared coffee is inserted into the bowel in order to stimulate a flush of the liver and gall bladder.

Colonic. A therapy in which a large amount of water is used to flush materials from the colon.

Craniosacral therapy. Physical therapy using touch to improve health by working on cerebrospinal fluid movement.

Desmopressin (DDAVP). A prescription drug that can serve to address issues with vasopressin, a hormone that is often problematic in patients with mold-related illness.

Dietary electrolytes. Sodium, potassium, calcium, magnesium and other substances that produce an electrical conducting capacity when present in body fluids.

Environmental air filters. A machine that is asserted to remove contaminants from the air.

Environmental ozone. The use of ozone to attempt to kill microbes or break down toxins in an environment.

Essential oils. Concentrated liquids containing volatile aromatic compounds from plants, which may be used topically, ingested or diffused with the goal of obtaining various health benefits.

Fermented foods. Foods such as yogurt, kefir, kombucha or sauerkraut, which have been preserved through the use of growing microbes.

Filtration mask. Mask worn over the nose and mouth, with the goal of reducing toxic exposures.

Glutathione. A polypeptide that is important in cellular respiration and that serves as a co-factor for many enzymes. It is major protective mechanism against oxidative stress.

Gluten-free diet. Elimination of wheat and other items containing gluten from the diet.

Glyphosate. A chemical sold under the trade name Roundup that has the ability to kill a wide variety of plants as well as microbes.

Homeopathic remedies. A medical field based on the principle of hormesis, in which very diluted substances are said to trigger the body to engage in its own healing efforts.

Hyperbaric oxygen therapy (HBOT). A medical treatment in which the patient spends a period of time in a high-pressure chamber in order to more fully oxygenate the body tissues.

Immune suppressants. Cortisone, rituximab, methotrexate, ciclosporin or other drugs that seek to improve health by decreasing the body’s immune response.

Low-dose naltrexone (LDN). A drug that is said to function as an immune modulator and to be helpful for some individuals with mold-related illness.

Low-mycotoxin diet. A diet low in the poisons made by toxic molds.

Magnesium. A mineral with a variety of physiological benefits, often reported to be especially helpful for those with mold-related illness.

MARCoNS infection. A bacterial infection that is said to have the ability to colonize the sinuses and to cause a variety of health issues; commonly treated with an antibiotic sinus spray.

Marijuana. An herbal medicine that is increasingly recognized as having the potential of being helpful with regard to a variety of medical conditions.

Massage. A bodywork technique thought to be useful in promoting detoxification through increased lymph movement.

Mast cell inhibitors. Drugs that attempt to improve health by decreasing mast cell reactivity.

Methylation. A core systemic process involved in glutathione utilization, energy production, detoxification and pathogen killing.

Methylfolate. An activated form of folate that is said to be especially appropriate for those with the MTHFR genetic mutation.

Mold avoidance sabbatical. Spending an extended period of time away from a suspect environment (and preferably in a known good environment), with the goal of becoming unmasked enough to determine whether it is a problem.

Neural therapy. A German technique involving the insertion of small amounts of procaine or other liquid substances into scars or acupuncture points, with the goal of increasing lymphatic or energetic movement.

Nutritional IV’s. Providing nutrition intraveneously rather than orally. Popular nutrients administered through IV include Myers Cocktails (mixtures of magnesium, B12 and other vitamins), vitamin C, alpha lipoic acid, glutathione and saline solution.

Omega 3 oils. Particular types of fatty acids, often derived from fish or flaxseeds.

Organic diet. A diet with foods produced in ways to exclude the presence of manmade chemicals.

Ozone therapy. A therapy in which ozone is administered into the body as a medical treatment (such as through IV’s, rectally, vaginally or through the skin).

Paleo diet. A diet focused on produce, nuts and meats, and that excludes grains, dairy and various other foods.

Phosphatidylcholine. A substance available in supplement form that plays an important role in forming cell membranes. Also called lecithin.

Probiotic supplements. Supplements containing specific strains of bacteria that may have the potential of being beneficial when present in the human gut.

Pyroluria. A condition posited to exist by some medical practitioners in which the system becomes chronically low in zinc, B6 and other core nutrients, supposedly leading to a variety of health issues.

Reactive foods (or problem foods). Foods that particular individuals have negative reactions to, due to food allergies or other problems.

Reflexology. A bodywork technique that focuses on the feet.

Tai chi. A Chinese martial art practiced for its health benefits.

Vasoactive intestinal peptide (VIP). A peptide hormone said to be deficient in a high percentage of individuals suffering from mold-related illness. Supplementation is available via some compounding pharmacies in the form of a nasal spray.

Vitamin B12. A water-soluble vitamin often said to be especially beneficial for many individuals with chronic illness, especially when administered sublingually or through injection.

Vitamin C. A vitamin often reported to be especially beneficial for those with chronic illness, especially with regard to addressing issues of oxidative stress.

Vitamin D. A vitamin that can be made by the body when exposed to sun that can have a positive effect on the immune system.

Wahls diet. A diet created by Dr. Terry Wahls, originally developed to help individuals with multiple sclerosis improve their mitochondrial function. It includes very large amounts of produce; quality organ meats and other meats; and other specific food choices.

Welchol. Another prescription medication is said to have the ability to stick to at least some types of mold toxins and other biotoxins and to carry them out of the body through the digestive tract.

Yoga. A practice that is said to have the potential of being helpful to those with mold-related illness due in part to the stretching that can encourage lymphatic flow.

 

Death Valley Zabriskie Point

Death Valley National Park in California is a popular mold avoidance sabbatical destination.

About the Author

Lisa Petrison earned her Ph.D. in marketing and social psychology from the Kellogg School of Management at Northwestern University, then worked as a tenure track professor at Loyola University Chicago before becoming disabled with ME/CFS in 2001.

She now is mostly recovered from the illness and is the executive director of Paradigm Change.

 

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More Information

The concept of the mold avoidance sabbatical as well as many other mold avoidance topics are discussed in the book A Beginner’s Guide to Mold Avoidance, written by Lisa Petrison and Erik Johnson. The book is available for free to those signing up for occasional emails on mold avoidance topics and also sold in Kindle format.

The book serves as the foundation for the Facebook recovery help forum Mold Avoiders.

A follow-up Mold Avoidance Survey focusing on additional therapies is planned for later this year. Please sign up for the Paradigm Change newsletter to be notified with information about the survey launch and about the eventual release of the survey results.

In the meantime, please take part in the current Chronic Illness Survey. It focuses primarily on reproductive issues, including health issues experienced by children of those with chronic illness and fertility issues. Anyone who has ever had any kind of chronic illness is welcome to participate.

Those signing up for the Paradigm Change newsletter also will receive a free PDF copy of the popular book about the remarkable life of mold avoidance pioneer Erik Johnson, called Back from the Edge. 

With regard to the 2015 Mold Avoidance Survey, considerable thanks go to the following co-sponsors who provided comments on the survey and encouraged people to participate in it: Scott Forsgren of Better Health Guy; Damien Blenkinsopp of Biohacked; Giles Meehan of Get Well from M.E.; Cort Johnson of Health Rising; A.M. Runyan of Mold, Biotoxin and Environmental Illness Cure Project; Karen Dean of Mold: The Severe Reactor; and Andrea Fabry of momsAWARE.

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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