Mold Avoiders Share More Details About Their Lives, Backgrounds, Beliefs and Treatment Experiences



January 6, 2017

By Lisa Petrison, Ph.D.

Periodically in the Mold Avoiders group, members share information on therapies that have been helpful to them and on what their lives are like in group polls.

A collection of some poll results were presented several months ago in the Living Clean in a Dirty World blog post “Mold Avoiders Report on their Experiences with Some Various Treatment Approaches.”

This blog post summarizes results of additional polls.

Following is a summary of polls listed in this post.



* 2016 Health-Promoting Activities

* Fungal Infection Treatments

* Sinus Infection Treatments

* Depression Treatment

* Mast Cell Treatment

* Prescription Drugs

* Antidepressants



* Location Success

* Best Locations

* Worst Locations

* November Effect



* Facebook Groups

* Retailers

* Chocolate

* Ammonia



* Restore for Gut Health

* Vasoactive Intestinal Peptide (VIP)

* Low Amylose Diet



* Stuff Disposal

* Reactivity Types


Health Conditions:

* POTS and Mast Cells

* Autoimmune Conditions



* Early Bird/Night Owl

* Appearance

* Ancestor Continents

* Blood Type

* Organ Loss



* Hell Toxin




2016 Health-Promoting Activities

“What activities did you do in 2016 that you were pretty sure or very sure were significantly helpful for your physical, emotional or spiritual health? Please provide suggestions for additional items to the comments. Hopefully this list will give others ideas of activities to focus on for 2017.”


1. Avoid toxic buildings (126 respondents)

2. Gluten-free diet (105 respondents)

3. Avoid food contaminated with chemicals or mold toxins (104 respondents)

4. Avoid toxic drinking water (93 respondents)

5. Avoid toxic locations (89 respondents)

6. Binders (81 respondents)

7. Probiotics (67 respondents)

8. Focus on meaningful work or activities (64 respondents)

9. Eat lots of produce (63 respondents)

10. Vitamin C (54 respondents)


View All Responses



Fungal Infection Treatment

“Have you found any therapies helpful for treating internal fungal infections? Please mark those that you have found to be substantially helpful for you for treating fungal infections (not for other purposes). If you would like items to be added to the poll, please write them in the comments.”


1. Avoiding sugar (86 respondents)

2. Avoiding gluten (72 respondents)

3. Avoiding carbohydrates (60 respondents)

4. Avoiding alcohol (54 respondents)

5. Mold avoidance (51 respondents)

6. Detoxification (47 respondents)

7. Oregano oil (32 respondents)

8. Avoiding anything sweet, including fruit (31 respondents)

9 (tie). Coconut oil (29 respondents)

9 (tie). VSL3 or other high-dosage probiotics (29 respondents)


View All Responses



Sinus Infection Treatments

“Please mark treatments that you believe have been critically important or very helpful to you in treating any kinds of sinus infections (not other health issues). If you would like items to be added to this poll, please add them to the comments.”


1. Mold avoidance (47 respondents)

2. Colloidal or hydrosol silver nasal spray (38 respondents)

3. Neti pot with saline solution (35 respondents)

4. Avoid dairy (29 respondents)

5. Xylitol nasal spray (26 respondents)

6. Avoid sugar (24 respondents)

7. Avoid gluten (23 respondents)

8 (tie). Regular probiotics, oral (19 respondents)

8 (tie). Vitamin C (19 respondents)

10. Amphotericin B nasal spray (12 respondents)


View All Responses



Depression Treatment

“If you have suffered from depression, please mark the treatments that have been substantially helpful for you at least at some point. You may add items to this poll.”


1. Spending time in sunlight (71 respondents)

2. Mold avoidance (68 respondents)

3. Detoxification (52 respondents)

4. Spending time in pristine locations (49 respondents)

5. Walking or other light exercise (46 respondents)

6. Good sleep (38 respondents)

7. Avoid toxic foods (35 respondents)

8. Faith (31 respondents)

9. Socializing or spending time with friends (28 respondents)

10. B vitamins (oral). (26 respondents)


View All Responses



Mast Cell Treatment

“If you have had mast cell issues and believe that you have had any success in treating them, please list the things that seem to have been helpful to you in this poll. Please be as specific as possible in listing what has helped (e.g. name of specific drug rather than “antihistamines”). Please feel free to add items to this poll. Please mark items that appear to have been at all helpful for you, even if the amount was not all that great.”


1. Avoiding mold (24 responses)

2. Quercetin (18 responses)

3. Benadryl (14 responses)

4 (tie). Avoiding other mast cell triggers (13 respondents)

4 (tie). Low histamine diet (13 responses)

6. Detoxification (12 respondents)

7 (tie). Spending time in pristine locations (8 respondents)

7 (tie). Wearing a mask (8 respondents)

7 (tie). Zyrtec (8 responses)

10. Avoiding all non-organic food (7 responses)


View All Responses



Prescription Drugs

“Have you benefited from any prescription drugs since starting mold avoidance? Please mark the drugs that you have used and that you believe you may have benefited from at least somewhat here. Medications do not have to have been helpful for mold illness symptoms. They could be for anything. Feel free to add items to the poll.”


1. Cholestyramine (55 respondents)

2. Armour thyroid hormone (18 respondents)

3. Low-dose naltrexone (15 respondents)

4. Diflucan/fluconazole (14 respondents)

5. Welchol (12 respondents)

6. BEG spray (11 respondents)

7. Doxycycline (10 respondents)

8. T3 thyroid hormone (9 respondents)

9 (tie). Klonopin/clonazapam (8 respondents)

9 (tie). Sporonax/itraconazole (8 respondents)


View All Responses




“Regardless of whether you have ever used antidepressants, please participate in this poll. Choose as many items as you like. If you have items that you think should be added, please write them in the comments.”

Total Respondents – 110


1. I have never taken any antidepressants. (42 respondents)

2. I have taken antidepressants, and they have made my mood symptoms worse or caused a general inflammatory flare. (27 respondents)

3. At least some of the negative effects that I have experienced from antidepressants have been pretty severe. (25 respondents)

4. I have taken antidepressants and they caused negative symptoms other than ones related to mood or inflammation, e.g. stomach issues. (20 respondents)

5. I have taken antidepressants and they have helped a lot with my mood problems. (15 respondents)

6. I have taken antidepressants and they have helped a little with my mood problems. (14 respondents)

7. I feel that taking antidepressants may have been a trigger factor that caused me to get sick(er) over the long term. (13 respondents)

8. I have taken antidepressants and they did not seem to do much one way or the other. (5 respondents)

9. I have benefited from antidepressants in ways other than improved mood. (3 respondents)

10. I have taken antidepressants but am not sure what their effects on me were. (3 respondents)



Location Success

“If you have lived reasonably successfully in a location for at least a few weeks since starting mold avoidance (even if you don’t feel that location was perfect), please share that information here. Please include places that you lived only when your reactivity was high, not before or after. Please feel free to add locations to this list.”


1. St. George, UT (4 responses)

2 (tie). Round Rock, TX (3 responses)

2 (tie). Rapid City, SD (3 responses)

4 (tie). Austin, TX (2 responses)

4 (tie). Colorado Springs, CO (2 responses)

4 (tie). Cottonwood, AZ (2 responses)

4 (tie). Evanston, IL (2 responses)

4 (tie). Joshua Tree, CA (2 responses)

4 (tie). Naples, FL (2 responses)

4 (tie). Santa Monica, CA (2 responses)

4 (tie). Vail, AZ (2 responses)


View All Responses



Best Locations

“Of all the places you have been, which ones have you felt were the best in terms of their effect on your health? Please choose up to three locations where people can live or camp. Feel free to add locations to this poll.”


1. Death Valley National Park, CA (5 respondents)

2 (tie). Ancient Bristlecone Pine Forest, CA (3 respondents)

2 (tie). Campgrounds near Dolores, CO (3 respondents)

4 (tie). Grand Canyon National Park, AZ (2 respondents)

4 (tie). Morongo Valley, CA (2 respondents)

4 (tie). Reno, NV (2 respondents)


View All Responses



Worst Locations

“For this poll, please list the worst locations that you have been in terms of their actual effects on your health or the effects that you would anticipate if you lived in those places. You may choose up to three locations. Feel free to add items to this poll.”


1. Dallas, TX (19 respondents)

2.. Seattle, WA (14 respondents)

3. Boston, MA (11 respondents)

4 (tie). Atlanta, GA (10 respondents)

4 (tie). Orlando, FL (10 respondents)

6 (tie). New York, NY (8 respondents)

6 (tie). Portland, OR (8 respondents)

8 (tie) Miami, FL (6 respondents)

8 (tie). Naples, FL (6 respondents)

8 (tie). Washington, DC (6 respondents)


View All Responses



November Effect

“The November Effect is a phenomenon where people who are sensitive to mold toxins and living in the northern hemisphere experience their condition getting significantly worse during the mid-fall (somewhere between mid-October to mid-November). These effects are especially noteworthy on days with dropping barometric pressure (e.g. oncoming storms); often are referred to as Mystery Toxin; and are especially problematic in certain locations. If you believe you have experienced the November Effect this season, please share the location. You may add items to this poll.


1. I have not experienced the November Effect in my current location (25 respondents)

2. Washington, DC (11 respondents)

3. Chicago, IL (10 respondents)

4. Boston, MA (9 respondents)

5 (tie). Portland, OR (5 respondents)

6 (tie). Seattle, WA (5 respondents)

7 (tie). Atlanta, GA (4 respondents)

7 (tie). Orange County, CA (4 respondents)

7 (tie). Phoenix, AZ (4 respondents)

10 (tie). Lewisville, TX (3 respondents)

10 (tie). Philadelphia, PA (3 respondents)


View All Responses



Facebook Groups

“If there are other Facebook groups besides Mold Avoiders that you have found substantially helpful in recovering from chronic illness, please mark which ones they are here. Feel free to add additional items to the poll.”


1.  Toxic Mold, CIRS and Lyme Disease (29 respondents)

2.  The Erik Johnson Effect (12 respondents)

3. Toxic Mold – Rediscovering Health and Wellness (11 respondents)

4. Toxic Mold Illness Support Australia (9 respondents)

5. Toxic Mold Support Group (9 respondents)

6. Surviving Toxic Mold (6 respondents)

7. Mastocytosis and Mast Cell Disorders – Integrative and Holistic Approach (5 respondents)

8. Hell Toxin Research and Discussion (5 respondents)

9. Bottoms Up (4 respondents)

10 (tie). Biotoxin Resources (3 respondents)

10 (tie). Elder Moldies (3 respondents)

10 (tie). Gerson Therapy Support Group (3 respondents)

10 (tie). Location Effects in the Caribbean (3 respondents)

10 (tie).  Ozone to Health (3 respondents)


View All Responses



Retailers Poll

“Buying products that are free of problematic cross-contamination can be a challenge for those who are avoiding mold. Which retail stores or online outlets have worked for you? Please list retailers that you have had enough success with that you would be hopeful that buying from them again in the future would be a good experience. Feel free to add retailers to this poll.”


1. Amazon (77 respondents)

2. Target (30 respondents)

3. Vitacost (23 respondents)

4 (tie). LL Bean (18 respondents)

4 (tie). Whole Foods (18 respondents)

6. REI (15 respondents)

7. Zappo’s (11 respondents)

8 (tie). Bulletproof (8 respondents)

9 (tie). Tropical Traditions (8 respondents)

10 (tie). IKEA (7 respondents)

10 (tie). Walmart (7 respondents)


View All Responses




“Chocolate can be a healthy food and also a treat, but it also can be contaminated with mold toxins or other toxins. Based on your own experiences, if you were going to eat chocolate, which brands do you think you would likely to be able to eat successfully without negative side effects? Please feel free to add items to the poll.”


1. Bulletproof Cocoa (16 respondents)

2. Green & Black (9 respondents)

3. Alter Eco (6 respondents)

4 (tie). Endangered Species (5 respondents)

4 (tie). Justin’s Organic (5 respondents)

4 (tie). Lulu’s Raw (5 respondents)

4 (tie). I never do well eating chocolate (5 respondents)

8 (tie). Equal Exchange (3 respondents)

8 (tie). Theo (3 respondents)

8 (tie). I never have problems with chocolate (3 respondents)


View All Responses



Ammonia Poll

“Which of these have characterized your use of ammonia for laundry? If you would like choices to be added to the poll, please add them to the comments section.”


1. I have not tried ammonia for laundry. (33 respondents)

2. I don’t use ammonia in laundry because ammonia itself feels toxic to me. (22 respondents)

3. Washing clothes with ammonia has fixed contamination issues that were not addressed by regular washing. (11 respondents)

4. Washing clothes with ammonia has helped them to feel better to me than they otherwise do (10 respondents)

5. Washing clothes with ammonia has helped them to smell less moldy. (6 respondents)

6. I have tried ammonia and not found it helpful for fixing contamination issues of clothing. (5 respondents)

7. Washing clothes with ammonia has on at least one occasion made toxicity issues (e.g. with Hell Toxin or similar) with them get a lot worse. (4 respondents)

8. I don’t use ammonia because other mold avoiders have told me it is not a good idea. (2 respondents)

9 (tie). Washing clothes in ammonia made no difference in cleaning moldy clothes. (1 respondent)

9 (tie). I don’t use ammonia in laundry because a doctor or other healthcare provider advised me not to do that. (1 respondent)



Restore for Gut Health

“Have you tried the product Restore for Gut Health? What was your experience with it if so? Please mark any of the following that are true for you. If you would like additional options, please write them in the comments.”


1. I have not tried Restore. (69 respondents)

2. I have tried Restore and didn’t notice anything good or bad. (13 respondents)

3. My gut health has improved since I started taking Restore. (11 respondents)

4 (tie). I have tried Restore and believe it was moderately helpful. (4 respondents)

4 (tie). My general health has improved since I started taking Restore. (4 respondents)

6 (tie). I had a negative reaction to Restore and have not taken more of the product as a result. (3 respondents)

6 (tie). I have tried Restore and believe it was a little helpful. (3 respondents)

8 (tie). I tried Restore briefly but didn’t intuitively feel good enough about it to continue taking it. (2 respondents)

8 (tie). My food sensitivities have gone down since I started taking Restore. (2 respondents)

8 (tie). I have tried Restore and don’t know if it was helpful. (2 respondents)


View All Responses



Vasoactive Intestinal Peptide (VIP)

“Please mark the items in this poll that are descriptive of your experiences with VIP. If there are items that you would like to see added, please write them in the comments.”


1. I have not tried VIP. (55 respondents)

2. I was helped by VIP when I was taking the drug, but the positive effects went away after I stopped taking it. (3 respondents)

3. I believe that VIP has been very helpful to me. (2 respondents)

4 (tie). I was helped by VIP when I was taking the drug, and the positive effects continued even after I stopped taking it. (1 respondent).

4 (tie). I believe that VIP has been somewhat helpful to me. (1 respondent)

4 (tie). I believe that VIP has been a little helpful to me. (1 respondent)

4 (tie). I believe that VIP has been harmful to me. (1 respondent)



Low Amylose Diet

“What have your experiences with the low-amylose diet been? If you would like to see items added, please add them to the comments.”


1. I have not tried the low-amylose diet. (34 respondents)

2. I have tried the low-amylose diet but am not sure if it was helpful to me. (4 respondents)

3. The low-amylose diet was very helpful to me. (3 respondents)

4. I was not able to tolerate cholestyramine and/or Welchol even though I was on the low-amylose diet. (2 respondents)

5 (tie). The low-amylose diet helped me to tolerate cholestyramine and/or Welchol. (1 respondent)

5 (tie). The low-amylose diet did not seem to make any difference one way or the other for me. (1 respondent)



Stuff Disposal

“What percentage of item from the environment where you were living prior to starting mold avoidance did you end up putting aside or disposing of either permanently or for an extended period of time (e.g. a year or more)? Please choose the one answer that describes your situation best. If you have suggestions for additions, please write them in the comments.”


1. I disposed of virtually all of my possessions but retained a few things. (44 respondents)

2. I disposed of most of my possessions. (21 respondents)

3. I disposed of some of my possessions. (17 respondents)

4. I disposed of all of my possessions. (7 respondents)

4. I did not dispose of any of my possessions but did get away from them for a time to see if they bothered me. (6 respondents)

5. I have not started mold avoidance yet. (4 respondents)

6. I did not dispose of any of my possessions and did not get away from them for a time to see if they bothered me. (2 respondents)

7. I disposed of a few of my possessions. (1 respondent)




“This poll asks about reactivities to different kinds of substances, previous and current. Although it may be impossible for people to be absolutely sure of the substances that they are reacting to, please make your best guess for the purposes of this poll. Please do not add items to this poll.”


1. I am currently substantially reactive to a variety of chemicals, e.g. I have MCS. (110 responses)

2. I currently am substantially reactive to many buildings due to their having mold problems. (82 responses)

3. I currently am substantially reactive to certain outdoor toxins. (67 responses)

4. I currently am substantially reactive to cross-contamination from certain particularly bad microbial toxins, e.g. “supertoxins.” (63 responses)

5. I currently am substantially reactive to a small percentage of buildings due to their having unusually bad mold problems. (51 responses)

6. I currently am substantially reactive to all kinds of mold, including non-toxic mold. (36 responses)

7. I currently am substantially reactive to cross-contamination from run-of-the-mill mold toxins. (33 responses)

8. I’m not sure what I am reactive to. (17 responses)

9. I previously was substantially reactive to a variety of chemicals, e.g. had MCS, but that is not the case now. (15 responses)

10. I previously was substantially reactive to many buildings due to their having mold problems, but that is not the case now. (8 responses)


View All Responses



POTS & Mast Cells

“This poll asks about two different kinds of symptoms – POTS (which appears to be especially associated with Mystery Toxin) and mast cell issues (which appear to possibly be especially associated with Hell Toxin). Please choose just one of the following responses. If you have an official diagnosis of POTS or mast cell issues, please consider that to be ‘severe’ for the purposes of this poll.”


1. I have had severe mast cell issues. (27 respondents)

2. I’m not sure which of these groups I fall into because I don’t know if my symptoms qualified as POTS or mast cell issues. (25 respondents)

3. I have had both POTS and severe mast cell issues. (20 respondents)

4. I have had severe POTS. (14 respondents)

5. I have not had either severe POTS or severe mast cell issues. (11 respondents)



Autoimmune Conditions

“Which of the following autoimmune conditions have you had at some point during your life? Please mark all that apply. If there are autoimmune diseases that you think should be added, please write the in the comments.”


1. Multiple chemical sensitivity (217 respondents)

2. Fibromyalgia (119 respondents)

3. Irritable bowel syndrome (100 respondents)

4. TMJ (76 respondents)

5. Hashimoto’s thyroiditis (60 respondents)

6. Mast cell activation disorder (51 respondents)

7. Endometriosis (47 respondents)

8. Postural Orthostatic Tachycardia Syndrome/POTS (35 respondents)

9 (tie). Raynaud’s (34 respondents)

9 (tie). Rosacea (34 respondents)


See All Responses



Early Bird/Night Owl

“Which of the following is true for you? If you would like an answer added to the poll, please suggest that in the comments.”


1. I always have been more of a night owl and still am. (61 responses)

2. My sleep is so messed up that I don’t know if I’m a night owl or early bird at present. (24 responses)

3. I always have been more of an early bird and still am. (13 responses)

4. I used to be more of a night owl before getting sick but now am more of an early bird. (11 responses)

5. I don’t think I’m currently either a night owl or an early bird, especially. (5 responses)

6. I used to be more of an early bird before getting sick bu now am more of a night owl. (2 responses)




“Please mark the choice that best describes your eye color, your natural hair color, and your natural skin color (before getting sick). If you think items should be added, please write them in the comments.”


1. Caucasian – fair skin (264 respondents)

2. Blue, gray or green eyes (235 respondents)

3. Medium brown hair (128 respondents)

4. Dark brown hair (92 respondents)

5. Caucasian – medium skin (89 respondents)

6. Brown eyes (89 respondents)

7. Hazel eyes (50 respondents)

8. Blond hair (46 respondents)

9. Light brown hair (41 respondents)

10. Red hair (25 respondents)


View All Responses



Ancestor Continents

“What continents do your ancestors come from?”


1. Europe (111 respondents)

2. Mediterranean (7 respondents)

3. North America (6 respondents)

4. Asia (5 respondents)

5. Africa (1 respondent)



Blood Type

“What is your blood type? Please choose only one response.”


1. A positive (32 respondents)

2. O positive (30 respondents)

3. B positive (11 respondents)

4. O negative (7 respondents)

5. AB positive (6 respondents)

6. A negative (4 respondents)

7. Not sure of blood type (3 respondents)

8. B negative (3 respondents)

9. O, not sure if positive or negative (2 respondents)

10. AB negative (1 respondent)


Comparison with U.S. Population Breakdown



Organ Loss

“Have you lost any of your organs at any point during your life? Please mark the ones you have lost here.”


1. No organs lost (33 responses)

2. Tonsils (13 responses)

3. Gall bladder (12 response)

4. Appendix (8 responses)

5. Uterus (7 responses)

6. Ovaries (4 responses)

7. Adenoids (3 responses)

8. Thyroid or 1/2 thyroid (2 responses)

9 (tie). Parathyroid glands (1 response)

9 (tie). Sinus surgery (1 response)



Hell Toxin

“Of the following statements, please mark the ones that you agree with. If you would like to see additional options, please write them in the comments.”


1. I believe that there is an unusually toxic substance referred to by mold avoiders as Hell Toxin that acts in ways that are hard to believe. (48 respondents)

2. Even if it is not yet understood, the Hell Toxin phenomenon sounds perfectly plausible from a scientific perspective to me. (36 respondents)

3. I’m not sure what I think with regard to Hell Toxin. (34 respondents)

4. I have not encountered a substance that seems like it is likely what people are calling Hell Toxin. (27 respondents)

5. I have had some outrageously problematic experiences with a substance that I believe to be Hell Toxin. (19 respondents)

6. I have encountered a substance that seems like Hell Toxin and believe I could be in big trouble if I got more exposure to it. (14 respondents)

7 (tie). I believe there is an unusually toxic substance called Hell Toxin but I am not sure that all the reports of it are true Hell Toxin reports. (11 respondents)

7 (tie). I believe that the Hell Toxin name is a problem and that it is a priority to come up with a new name for it if we are going to talk about it. (11 respondents)

7 (tie). I have not encountered anything like descriptions of Hell Toxin but believe it is perfectly plausible that it is out there. (11 respondents)

10. I believe that there are some toxins that are worse than others, but that reports of Hell Toxin have gone overboard. (8 respondents)


View All Responses


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

More polls conducted in the Mold Avoiders group are summarized in the Living Clean in a Dirty World blog post “Mold Avoiders Report on Their Experiences with Some Various Treatment Approaches.”

Additional research findings relevant to recovering from mold-related illness are described in the Paradigm Change blog post “Which Therapies Do Improved Mold Avoiders Believe Helped Them?”

A page on the Paradigm Change website provides a summary of information related to Mold Illness Recovery.

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 is sold in Kindle format.

The book serves as the foundation for the Facebook recovery help forum Mold Avoiders, headed by Lisa Petrison.

General information about mold-related illness is provided on the Paradigm Change website.

Those signing up for the Paradigm Change newsletter 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.

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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