Mold Avoiders Report on Their Experiences with Some Various Treatment Approaches

 

Death valley

September 12, 2016

By Lisa Petrison, Ph.D.

During the past several months, I have conducted a number of polls on various topics related to illness recovery in the Mold Avoiders Facebook group.

I have found the results to be informative and so thought that I would summarize the results in a blog post.

Note that these results should not necessarily be taken to be indicative of how all people with mold-related illness or chronic illness likely feel about these topics.

Rather, the fact that those participating in the group may be more likely to be specific types of people may have affected the results.

The Mold Avoiders group is explicitly stated as being based on the book A Beginner’s Guide to Mold Avoidance, which was written by Erik Johnson and me.

The book focuses on the idea of using one’s own reactions to avoid even very small amounts of mold toxins – an undertaking that requires a substantial amount of effort and determination. Nonetheless, many members of the group have pursued this approach and reported benefits.

It thus may be that members of the group are on average getting less exposure to problematic mold toxins than are mold illness patients or chronic illness patients as a whole.

Many of these individuals have started out with particularly severe symptoms, such as being housebound or bedridden with classic “ME/CFS” illness.

My observation is that they also tend to be especially determined to recover to every extent possible and to be especially savvy about various treatments that are available for the illness.

Another thing to note about these results is that they are by their nature only reports of what these individuals believe about what has been helpful for them, rather than findings that have been proven to be true as a result of controlled and peer-reviewed research studies.

They thus should be considered only as a starting point for considering approaches that might be helpful, rather than used as evidence of treatments that for sure have been found to be helpful.

Those who are interested in this topic also may want to read my previous Paradigm Change blog post, “Which Therapies Do Improved Mold Avoiders Believe Helped Them?”

 

Healing Strategies

“All in all, how helpful have the following general healing strategies been for you since you started mold avoidance? Please mark only the items that have been critically important or very helpful for you. If you would like to see an item added, please write it in the comments.”

 

1. Avoidance of environmental toxins (30 respondents)

2. Detoxification (26 respondents)

3. Nourishing the body (18 respondents)

4. Addressing gut issues (15 respondents)

5. Avoiding problem foods (12 respondents)

6. Addressing pathogens (10 respondents)

7. Reducing physical or emotional stress (7 respondents)

8. Addressing methylation issues (5 respondents)

9. Shoemaker protocol (2 respondents)

10. Addressing mast cell issues (1 respondent)

 

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Healing Tactics

“Which of the following healing tactics have been especially helpful to you since starting mold avoidance? Please mark the ones that have been critically important or very helpful to you. If you have additional approaches that you believe should be added, please write them in the comments.”

 

1. Avoiding environmental toxins (47 respondents)

2. Eating the right foods (36 respondents)

3. Vitamins, minerals or supplements (32 respondents)

4. Bodywork or physical movement (19 respondents)

5. Herbs or essential oils (17 respondents)

6. Homeopathy (14 respondents)

7 (tie). Emotional work (11 respondents)

7 (tie). Prescription drugs (11 respondents)

 

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Mold Avoidance Sabbatical

“Which of the following statements is true for you? Please choose just one response. If you would like to see other responses added to the poll, please write them in the comments.”

 

1. I have been on a mold avoidance sabbatical and found it to be very helpful. (37 respondents)

2. I have not yet been on a mold avoidance sabbatical. (18 respondents)

3. I have been on a short sabbatical but believe I would need a longer one in order to gauge results properly. (7 respondents)

4 (tie). I have been on a mold avoidance sabbatical and found it to be somewhat helpful. (2 respondents)

4 (tie). I have been on a mold avoidance sabbatical but looking back did some things wrong that may have interfered with the results. (2 respondents)

 

View All Responses

 

Detoxification Treatments

“Which of the following detoxification-related treatments have been critically important or very helpful to you in working to heal from chronic illness? Please add suggestions for additional items to the comments.”

 

1. Binders (48 respondents)

2. Getting clear of toxic exposures (46 respondents)

3. Sauna or other sweating (35 respondents)

4. Epsom salts or mineral baths (32 respondents)

5 (tie). Cleansing herbs, e.g. liver (24 respondents)

5 (tie). Emotional or spiritual work (24 respondents)

5 (tie). Methylation-related supplements (24 respondents)

8. Glutathione or precursors (22 respondents)

9. Coffee enemas (21 respondents)

10. Juicing or raw produce (19 respondents)

 

View All Responses

 

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Binders and Chelators

“Which of these binders or chelators have been critically important or very helpful to you as you have worked to recover your health? Please list suggestion for items to be added to this poll in the comments.”

 

1. Activated charcoal (37 respondents)

2. Cholestyramine (20 respondents)

3. Bentonite clay (18 respondents)

4. Zeolite, e.g. CytoDetox (11 respondents)

5. Chlorella (10 respondents)

6. Modified citrus pectin (9 respondents)

7 (tie). Cilantro (8 respondents)

7 (tie). Diatomaceous earth (8 respondents)

9 (tie). Alpha lipoic acid (6 respondents)

9 (tie). Chlorophyll (6 respondents)

 

View All Results

 

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Cholestyramine

“Following are some statements about cholestyramine. Please check all the ones that are true for you. If there are additional statements that you think should be added, please write them in the comments.”

 

1. I have not tried cholestyramine. (41 respondents)

2. I tolerated cholestyramine with no problems even in a moldy house. (18 respondents)

3. I was able to tolerate cholestyramine without substantial problems after pursuing avoidance according to the Shoemaker approach. (14 respondents)

4. I have tried cholestyramine but was not ever able to tolerate it. (11 respondents)

5. I had some negative symptoms when I first started cholestyramine, but they were not a big deal and didn’t keep me from staying on the drug. (6 respondents)

6 (tie). I continued taking cholestyramine despite substantially negative reactions and eventually was able to tolerate it. (4 respondents)

6 (tie). I was able to tolerate cholestyramine only in conjunction with high-dose fish oil. (4 respondents)

8. I was able to tolerate cholestyramine only after pursuing much more scrupulous mold avoidance than the Shoemaker protocol suggests. (3 respondents)

9. I was able to tolerate cholestyramine only after I had achieved substantial healing as a result of other therapies or time passing. (2 respondents)

10. I have to take cholestyramine only in conjunction with psyllium so that it doesn’t cause constipation. (1 respondent)

 

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Ionic Detox Footbath

“This is a poll for people who have used the Ionize Me detox footbath. Please participate in this poll ONLY if you have used this particular footbath (Ionize Me). If you have used the Ion Cleanse footbath, there is a different poll for that.”

 

1. I feel pretty sure or very sure that this footbath has been helpful enough to have been worthwhile. (12 respondents)

2. I often or always feel better in the short run after using this footbath. (9 respondents)

3. This footbath has helped to compensate for or reverse acute mold exposures. (6 responses)

4. My general health has improved since I started using this footbath. (5 responses)

5. My reactivity to mold toxins has decreased since I started using this footbath. (3 responses)

6 (tie). After using the footbath, I get extremely tired and fall asleep. (2 responses)

6 (tie). I have used this footbath but not done so enough to know what kind of effect it is having on me. (2 responses)

8. I have tried this footbath but haven’t noticed any particular benefits. (1 response)

 

View All Responses

 

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Pathogen Treatments

“Has any of these pathogen treatments been critically important or very helpful in helping you to recover your health? Please mark only those items that you feel have been at least very helpful in controlling pathogens – not ones that have been helpful for other purposes.”

 

1. Controlling pathogens by getting clear of toxic exposures (32 respondents)

2. Controlling pathogens via diet (27 respondents)

3. Controlling pathogens via detoxification (26 respondents)

4. Herbs to treat pathogens other than parasites (25 respondents)

5. Herbs to treat parasites (18 respondents)

6. Supplements to dissolve biofilms (15 respondents)

7 (tie). Addressing pathogens by avoiding sugar or carbohydrates (14 respondents)

7 (tie). Oregano oil (14 respondents)

8. Essential oils other than oregano oil (13 respondents)

9 (tie). Antibiotic drugs, IV or oral (12 respondents)

9 (tie). Colloidal silver (12 respondents)

9 (tie). Juicing or raw produce (12 respondents)

 

View All Responses

 

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Healing the Gut

“Which of the following gut-related treatments have been critically important or very helpful to you in working to recover your health? Please choose all that have been true for you.”

 

1. Avoiding reactive foods, e.g. gluten (66 respondents)

2. Getting clear of toxic exposures (58 respondents)

3. High-dose probiotics, e.g. VSL3 (32 repondents)

4. Magnesium (31 respondents)

5. Digestive enzymes (29 respondents)

6. Juicing or raw produce (26 respondents)

7. Emotional or spiritual work (24 respondents)

8 (tie). Bone broth (23 respondents)

8 (tie). Epsom salts or mineral baths (23 respondents)

8 (tie). Vitamin C (23 respondents)

 

View All Responses

 

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Sleep Therapies

“Have you found any therapies that have helped your sleep (either in the past or currently)? Please mark all the ones that have been significantly helpful to you. Please feel free to add other options to the poll.”

 

1. Effective mold avoidance (55 respondents)

2. Magnesium (42 respondents)

3. Totally dark environment (38 respondents)

4. Epsom salts baths (30 respondents)

5. Melatonin (28 respondents)

6. Avoid wi-fi or other EMF issues when sleeping (19 respondents)

7 (tie). Benzodiazapines, e.g. Klonopin or Xanax (17 respondents)

7 (tie). Meditation (17 respondents)

9 (tie). Avoid computers or technology before bed (16 respondents)

9 (tie). Good air filter (16 respondents)

 

View All Responses

 

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Vitamins and Minerals

“Which of the following vitamins or minerals do you feel has been at least somewhat helpful to you? Please feel free to add additional items to the list.”

 

1. Magnesium (42 respondents)

2. Vitamin D3 (33 respondents)

3. Vitamin C (26 respondents)

4. Methylcobalmin B12 (24 respondents)

5. Iodine (23 respondents)

6. Trace minerals (16 respondents)

7. Zinc (15 respondents)

8 (tie). Hydroxycobalmin B12 (14 respondents)

8 (tie). L-5-MTHF methylfolate (14 respondents)

8 (tie). Vitamin B complex, non-yeast formula (14 respondents)

 

View All Responses

 

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Other Supplements

“Which supplements have you found to be critically important or very helpful in working toward recovery? Note that vitamins, minerals, herbs and binders will not be included in this poll. They will be considered separately. Please write suggestions for additions in the comments.”

 

1. Glutathione or precursors (36 respondents)

2. Digestive enzymes (31 respondents)

3. Omega 3 oils, e.g. fish, krill or flax (30 respondents)

4. High-dose probiotics, e.g. VSL3 (27 respondents)

5 (tie). Coenzyme Q10 (25 respondents)

5 (tie). Adrenal or other glandular support (25 respondents)

7. Phosphatidyl choline (17 respondents)

8. Alpha lipoic acid (15 respondents)

9 (tie). Colloidal silver (14 respondents)

9 (tie). Oregano oil (14 respondents)

9 (tie). Probiotics, standard dose (14 respondents)

 

View All Responses

 

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Essential Oils

“Nearly a quarter of the respondents in the Mold Groups Treatment Poll cited essential oils as having been critically important or very helpful in allowing them to make health gains. Whether these oils were used to treat their bodies or treat their environments, I am not sure. And insofar as the oils were used to treat their bodies, it’s also unclear whether they were used through inhalation, skin, ingestion or rectal administration. Nonetheless, this poll is designed to consider the particular essential oils that people believe have been at least somewhat helpful to them. Please mark the relevant oils (and add other oils if you like). If oils are marked “Environment,” then those will be for apparent success in making the environment feel better. Otherwise we will assume that the oils were helpful in treating the body.”

 

1. Frankincense oil (43 respondents)

2. Thieves oil, environment (42 respondents)

3. Peppermint oil (29 respondents)

4. Lavender oil (27 respondents)

5. Lemon oil (23 respondents)

6. Tea tree oil (22 respondents)

7. Thieves oil, personal/therapeutic (21 respondents)

8. Clove oil (19 respondents)

9. Oregano oil, non-specified (17 respondents)

10 (tie). Eucalyptus oil (13 respondents)

10 (tie). Wild oregano oil (13 respondents)

 

View All Responses

 

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Low-Dose Naltrexone

“What have your experiences with low-dose naltrexone (LDN) been? Please mark all the statements that you believe to have been true for you. If you would like me to consider adding options, please suggest them in the comments.”

 

1. I have not tried LDN. (22 respondents)

2. LDN has been very helpful to me. (12 respondents)

3. I have tried LDN for less than two weeks and it was not helpful to me. (7 respondents)

4. I have tried LDN for more than two weeks and it was not helpful to me. (6 respondents)

5. LDN has been somewhat helpful to me. (5 respondents)

6. I have tried LDN for more than two weeks and don’t know if it was helpful to me. (4 respondents)

 

View All Responses 

 

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VSL3

“Today I would like to ask about a product called VSL#3. Please help out by marking all the statements that are true for you. If you would like to add items to the poll, please note that in the comments.”

 

1. I have never used VSL3. (41 respondents)

2. I believe that VSL3 has been helpful to me. (10 respondents)

3 (tie). VSL3 did not seem to be helpful to me, but another probiotic did seem to be helpful. (2 respondents)

3 (tie). VSL3 did not seem to be helpful to me, and neither did other probiotics. (2 respondents)

3 (tie). I have not used VSL3 long enough to know whether it has been helpful. (2 respondents)

6. VSL3 had a negative effect on me and so I discontinued it. (1 respondent)

 

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Eating Approaches

“Which of these approaches to eating have been critically important or very helpful to you? Please mark all that apply.”

 

1. Organic or pesticide-free diet (39 respondents)

2. Gluten-free diet (35 respondents)

3. Avoiding my own idiosyncratic mix of foods (29 respondents)

4. Elimination diet (16 respondents)

5 (tie). Grain-free diet (14 respondents)

5 (tie). Paleo diet (14 respondents)

5 (tie). Quality whole foods diet (14 respondents)

8. Low oxalate diet (10 respondents)

9. Intermittent fasting (9 respondents)

10. Low FODMAPs diet (6 respondents)

 

View All Responses

 

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Foods, Spices & Herbs

“Have  you found that any common kitchen ingredients have been helpful to you for detoxification, addressing pathogens or other healing? Please mark all the items that you believe have been at least somewhat helpful to you. Feel free to add more choices to this poll.”

 

1. Garlic (33 respondents)

2. Ginger (32 respondents)

3. Turmeric (29 respondents)

4. Coconut oil (25 respondents)

5 (tie). Apple cider vinegar (20 respondents)

5 (tie). Oregano oil (20 respondents)

7. Green juice (17 respondents)

8 (tie). Carrot juice (16 respondents)

8 (tie). Water (16 respondents)

10. Aloe vera juice or gel (11 respondents)

 

View All Responses

 

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Fermented Foods

“Following are some statements about fermented foods. Please mark all the ones that you believe have been true for you since starting mold avoidance. If you would like to see items added, please write them in the comments.”

 

Fermented Vegetables:

1. I have had a negative reaction to sauerkraut or other fermented vegetables. (18 respondents)

2. I have had a positive reaction to sauerkraut or other fermented vegetables. (7 respondents)

3. I have not had any noticeable effects from sauerkraut or other fermented vegetables. (4 respondents)

 

Fermented Dairy:

1. I have not had any noticeable effects from yogurt or milk kefir. (18 respondents)

2. I have had a positive reaction from yogurt or milk kefir. (12 respondents)

3. I have had a negative reaction from yogurt or milk kefir. (8 respondents)

 

Kombucha or Water Kefir:

1. I have had a positive reaction to kombucha or water kefir. (9 respondents)

2. I have had a negative reaction to kombucha or water kefir. (7 respondents)

3. I have not had noticeable effects to kombucha or water kefir. (3 respondents)

 

View All Responses

 

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Mushrooms

“Which of these represents your current perspective about mushrooms? Choose as many items as you like. If you have other choices you would like to see added, please write them in the comments section.”

 

1. I don’t seem to have any apparent problems with mushrooms and eat them at least from time to time. (33 respondents)

2. I have experienced negative reactions to mushrooms and so don’t eat them. (14 respondents)

3. I’m not sure whether mushrooms are a good thing or a bad thing for me. (11 respondents)

4 (tie). I haven’t noticed any specific problems from mushrooms but don’t eat them because I don’t like them. (5 respondents)

4 (tie). I have found taking mushrooms in supplement form to have therapeutic benefit for me. (5 respondents)

6. I haven’t noticed any specific problems from eating mushrooms but avoid them because others have suggested they are bad. (4 respondents)

7 (tie). I avoid mushrooms because they are not low in FODMAPs. (2 respondents)

7 (tie). Sometimes I can eat mushrooms without a reaction, but other times (or with other types of mushrooms) I do have a reaction. (2 respondents)

9. I experience negative reactions to mushrooms but eat them anyway. (1 respondent)

 

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Coffee

“What’s your experience with drinking coffee? Please mark all the items that apply. If you would like the poll to have more options, please write them in the comments.”

 

1. I love coffee! (50 respondents)

2. I believe that coffee has helped me to be more functional or productive. (33 respondents)

3. If I am going to drink coffee, it has to be organic. (17 respondents)

4. I drink coffee for energy even though sometimes it makes me feel odd. (15 respondents)

5. I avoid coffee because I do badly with it. (12 respondents)

6. I drink coffee once in a while, but I don’t do all that well with it. (11 respondents)

7. I have problems with the caffeine in coffee.  (9 respondents)

8 (tie). I avoid coffee because I don’t like the taste or just don’t need it. (7 respondents)

8 (tie). Even though I don’t do all that well with coffee, coffee enemas are fine or great for me. (7 respondents)

10 (tie). I find coffee more helpful when I am in a problematic environment. (5 respondents)

10 (tie). I believe that coffee has been helpful for my health in general. (5 respondents)

 

View All Responses

 

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Low FODMAPs Diet

“Have you tried a diet low in FODMAPs? Please choose the one answer that is the best representation of your experiences with this diet. If you would like to add other choices, please note them in the comments.”

 

1. I have not tried the low FODMAPs diet. (41 respondents)

2. I have tried the low FODMAPs diet and benefited. (13 respondents)

3. I have tried the low FODMAPs diet but don’t know if I benefited. (3 respondents)

4 (tie). I have tried the low FODMAPs diet and believe it made me worse. (1 respondent)

4 (tie). I used the low FODMAPs diet and believe I benefited, but I don’t need it any more. (1 respondent)

6. I have tried the low FODMAPs diet but did not seem to benefit. (0 respondents)

 

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Diatomaceous Earth

“What have your experiences been with diatomaceous earth (DE)? Please mark all answers that are true for you. Please add suggestions for additional answers to the comments below.”

 

1. I have not tried DE. (21 respondents)

2 (tie). I have taken DE internally but am not sure if it was helpful. (14 respondents)

2 (tie). I have tried DE for killing bugs in my environment (not my body) and found it helpful. (14 respondents)

4. I have taken DE internally and found it helpful for killing pathogens. (5 respondents)

5. I have taken DE internally and gotten a negative response that I don’t think was due to die-off. (4 respondents)

 

View All Responses

 

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Air Purifiers

“This is a poll on machines that purport to clean the air of problematic toxins. Please mark which of the following air purifiers you personally have found helpful enough to recommend that others look into purchasing them. Please feel free to add additional options to the poll.”

 

1. Austin Air (14 respondents)

2. Germ Guardian (13 respondents)

3 (tie). Air Oasis (9 respondents)

3 (tie). IQ Air (9 respondents)

5 (tie). Hi Tech Air Solutions (8 respondents)

5 (tie). Ozone machine (8 respondents)

7. Honeywell (7 respondents)

8. I’ve never found an air purifier to be that helpful (6 respondents)

9. Blue Air (5 respondents)

10 (tie). I’ve found that air purifiers can make things worse for me (4 respondents)

10 (tie). I’ve found inexpensive air purifiers to be a little helpful but don’t think the expensive ones are worth the money (4 respondents)

 

View All Responses

 

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Remediating a Vehicle

“If  you have had good luck in decontaminating a cross-contaminated vehicle (especially one you live in), please participate in this poll. I’ve included some common methods, but if you use something else, go ahead and add the option to the poll.”

 

1. Fumigating the vehicle with ozone. (17 respondents)

2. Using chlorine dioxide (6 respondents)

3. Wiping down surfaces with soap and water. (5 respondents)

4. Hi Tech Air Solutions machine. (3 respondents)

5. Wiping down surfaces with a solution such as Downy Free and Gentle. (2 respondents)

6 (tie). Air Oasis Air Angel with cigarette lighter plug in. (1 respondent)

6 (tie). Take the vehicle to a higher elevation. (1 respondent)

 

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Information Sources

“All in all, how helpful has each of the following healthcare practitioners or information resources been for you in working to recover your health? Please mark the ones that have been critically important or very helpful for you. If you would like to see items added, please write them in the comments.”

 

1. Books, articles, websites or films (61 respondents)

2. Online or personal discussions with patients (51 respondents)

3. Functional medicine or integrative practitioners (25 respondents)

4. Mold-oriented practitioners (23 respondents)

5. Genetic testing (13 respondents)

6. Naturopaths (8 respondents)

7 (tie). Acupuncturists (5 respondents)

7 (tie). ME/CFS-oriented practitioners (5 respondents)

9 (tie). Herbalists (2 respondents)

9 (tie). Conventional medicine practitioners (2 respondents)

 

View All Responses

 

Healthcare Spending Regrets

“Sometimes people who have been practicing mold avoidance for a while look back and conclude that some of the money that they have spent trying to get well has not been wisely spent and that they wish they could get it back. Following is a list of some things that they sometimes bring up as wishing that they hadn’t spent as much money on or any money on. If there are items on this list that you spent significant amounts of money on that you now regret and wish you hadn’t spent, please check those items. If there are other items that you think should be on this list, please mention them in the comments.”

 

1. Practitioner fees, non-mold doctors (38 respondents)

2. Medical testing, non-mold tests (20 respondents)

3. Prescription drugs (17 respondents)

4. Supplements (16 respondents)

5. Storage for contaminated belongings (14 respondents)

6. Environmental air tests (13 respondents)

7. Remediating a home (12 respondents)

8. Replacing discarded belongings with new items (11 respondents)

9. Trying to clean contaminated possessions (8 respondents)

10. Air filters (7 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 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?”

Another Paradigm Change blog post – called “Which Practitioners Do Mold Group Participants Believe Helped Them?” – focuses on patients’ views about practitioners.

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 sold in Kindle format.

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

These polls were  in part conducted as preliminary research for a larger Mold Avoidance Survey (the second to be conducted by Paradigm Change). 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.

Those signing up for the 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. 

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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