November 27, 2018
By Lisa Petrison, Ph.D.
Mold-related illness is such a complex and difficult topic that it can be challenging for those who have just started learning about it to get a good grasp on the subject matter.
The main Paradigm Change website is specifically designed to meet the needs of beginners to the topic by providing a wide variety of overview articles.
Below are fifteen specific ways that those who are interested in learning more about health issues related to toxic mold can get started in the process.
Resources suitable for patients, medical practitioners and researchers are included on this list.
#1. Watch the “Moldy” movie.
This hour-long film – produced by biohacker Dave Asprey of Bulletproof – provides a basic overview of the topic of mold-related illness.
It includes interviews with more than two dozen mold experts and mold patients. (I am featured in the movie, by the way.)
The film may be especially appropriate not just for individuals who believe they may have mold-related illness themselves, but also for sharing with family or friends.
#2. Spend a few minutes reading “Back From The Edge.”
This readable short book outlines the life story of Erik Johnson, a pioneer in the field of mold illness and a cohort member of the 1980’s Lake Tahoe epidemic of the disease that the CDC now calls ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).
The book provides a quick introduction to a number of difficult topics, including the role of toxic mold in ME/CFS; mold hyperreactivity; mold avoidance; detoxification; and hypothesized interactions between environmental chemicals and mold.
The full title of the book is Back from the Edge: How One Man’s Discovery Brought Him From Desperately Sick With Chronic Fatigue Syndrome to the Top of Mt. Whitney in Six Months.
The book has a foreword by Keith Berndtson, M.D., and was reviewed favorably on the Surviving Mold website by Ritchie Shoemaker, M.D.
It is available for free in PDF format to those signing up for occasional newsletters from Paradigm Change and also may be purchased as an Amazon Kindle book.
#3. Look into pursuing mold avoidance.
During the past several years, many individuals with ME/CFS or similar health conditions have tried Erik Johnson’s approach to avoiding even very small amounts of mold toxins and reported positive results.
The approach is outlined in the book A Beginner’s Guide to Mold Avoidance, written by Erik Johnson and me.
The book is the foundation for the Mold Avoiders Facebook group, which has more than 12,000 members.
Those wanting to dig deeper may benefit from reading Erik On Avoidance, which is a dense but thought-provoking collection of writings on mold avoidance topics by Erik Johnson.
All of these materials plus a great deal of other information on mold avoidance are available for free from the Mold Avoiders website.
#4. Join a mold group.
Tens of thousands of patients now participate in several dozen Facebook groups focusing on mold-related illness topics.
While those participating in the Mold Avoiders group need to have already read the book A Beginner’s Guide to Mold Avoidance, other groups discuss somewhat different topics and are open to those without any prior knowledge at all.
Links to all groups currently in operation are summarized on the Paradigm Change page “Mold Illness Discussion Forums.”
#5. Visit the Paradigm Change blog.
The Paradigm Change blog presents in-depth articles on topics relevant to mold-related illness issues.
A few of the most popular articles over time have included:
“The Mold Avoider’s Dilemma: What Should I Do About My Stuff?”
“Mold Hypersensitivity: Guidelines to Help Sufferers Stay Safe”
“Dr. Oz Tackles The Topic of ‘Mold Poisoning’: How’d He Do With It?”
“Outdoor Toxins of Particular Relevance to Mold Illness Patients”
“A Moldy Home, A Flu-Like Illness And The Deaths of Brittany Murphy and Simon Monjack”
“Could Laura Ingalls Wilder and Almanzo Wilder Have been Toxic Mold Victims?”
“Did the Mold at Grey Gardens Affect Big Edie and Little Edie Beale?”
“What Therapies Do Improved Mold Avoiders Believe Helped Them?”
“Losing My Defenses: An Interview with Dr. Enusha Karunasena on the Neurological Effects of Satratoxin”
#6. Become familiar with the medical research.
The U.S. government has not done a review of the evidence for the health dangers of mold since 2004, and the CDC website has little to say about its potential to cause anything other than allergies and respiratory issues.
The media therefore sometimes suggest that this means that there is no evidence that other health problems may be caused by toxic mold and that the concept of “toxic mold illness” should not be taken seriously.
In reality, however, there is a substantial and rapidly growing literature providing evidence that moldy buildings have the potential of causing a wide range of health effects.
This literature is presented in the “Toxic Mold Illness Research” section of the Paradigm Change website.
#7. Look for mold in your home, workplace or school.
Most people who first start learning about mold-related illness immediately wonder if a mold problem might be present in their own home or in other buildings where they spend time.
Resources on the Paradigm Change site discuss the ins and outs of mold testing and provide a list of mold professionals that patients have reported as having been helpful to them.
#8. Consider your own health issues.
Those who are not sure whether their own health problems have anything to do with mold may want to start out by looking at the “Toxic Mold Illness Diagnosis” page of the Paradigm Change website.
The page includes symptom lists as well as basic information on at-home tests and laboratory tests.
#9. Consult with a medical practitioner.
While medical treatments should not be expected to make much difference to those who are still living or working in a moldy building, physicians and other health professionals with knowledge about mold illness can help to diagnose the problem and can provide information to those who are suffering from it.
Once individuals are out of exposure, treatments offered by medical professionals may be useful in allowing them to return to a state of better health.
A page on the Paradigm Change website lists practitioners with experience treating mold illness, organized by U.S. state or other country.
Another website page – called “Clinical Treatment of Mold Illness” – lists a variety of articles written by medical practitioners.
#10. Focus on the locations effect.
Many mold-sensitized people report reacting just as much to outdoor toxins as to indoor ones.
A page of the Paradigm Change site summarizes the positive and negative effects that different kinds of locations may have on health.
The Paradigm Change Locations Ratings project allows those who are avoiding mold to provide their assessments of places where they have spent time, and the average ratings are plotted on a map.
#11. Explore the Living Clean In A Dirty World blog.
This community blog project provides a highly curated selection of articles relevant to recovering from mold-related illness from many different sources.
The project is presented by Paradigm Change.
#12. Be inspired by improvement stories.
Those who are in need of some hope may want to start out by reading the Paradigm Change page “Improved Patients Discuss Their Mold Avoidance Experiences.”
The page includes summaries by more than 30 individuals sharing information about how mold avoidance and treatment has changed their lives for the better.
#13. Pick up a book.
A number of other books published recently provide useful information on mold-related illness topics.
For instance, Break The Mold (written by Dr. Jill Crista) and Is Your House Making You Sick? (written by Andrea Fabry) both provide readable and easily comprehensible overviews of the subject.
Recently published treatment books include Toxic (written by Dr. Neil Nathan) and Mold Illness: Surviving and Thriving (written by a medical practitioner, a patient who also is a nurse, and a building contractor).
Those planning to pursue mold avoidance while camping or in a building may want to read Sara Riley Mattson’s Camp Like A Girl or Christa Upton’s Building A House For Multiple Chemical Sensitivity: A Mold-Resistant, Low-Tox Home.
Another possibility is Julie Rehmeyer’s Shadowlands, which received many positive reviews from publications such as The New Yorker and The Washington Post.
#14. Follow a mold blog.
Quite a few mold patients have summarized their experiences moving toward wellness in blog format, while others have written more general articles on particular topics.
“Ana Harris Writes,” “It Takes Time” and “Biotoxin Journey” are some good places to start.
#15. Learn about the psychiatric connection.
Many individuals with mold-related illness have stated that symptoms such as depression or anxiety have improved dramatically for them after starting mold avoidance and can come back quickly if they are re-exposed.
A number of research studies published over the past few years have presented findings suggesting that mold exposures can lead to psychiatric symptoms.
Dr. Mary Ackerley’s “Brain on Fire” has been one of the most popular Paradigm Change blog articles over the years.
A Paradigm Change page called “Mold and Psychiatric Symptoms” presents some additional information on this topic.
Lisa Petrison is the executive director of Paradigm Change.
Links on this page are in orange (no underlining).