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If you or someone in your family is sick, and you know or suspect that one cause of the illness is exposure to mold or other biotoxins present in water-damaged buildings or exposure to other toxins in the environment, you need to learn about the causes of this illness and how to treat it. The learning process can be overwhelming, especially because so many people suffering from environmentally acquired illnesses (EAIs) have severe cognitive problems as a result of the toxic exposure. Here we list some of the resources that can help you to learn some of the strategies that other EAI patients have used to improve their health. The primary focus of this page is on illness caused by toxins in water-damaged buildings. A wide array of resources also are available on Lyme disease and associated infections, multiple chemical sensitivity and other EAIs.
The listing of resources on this page is to share information that may be useful and does not reflect ISEAI endorsement of the content of websites, articles, etc.
The Better Health Guy This site, maintained by EAI expert and patient Scott Forsgren, offers high-quality information about biotoxin illness, including blog posts and interviews with experts.
Biotoxin Journey This site includes articles by one CIRS patient who shares his own experience, offers practical guidance to other patients and synthesizes information about treatment of biotoxin illness.
Dr. Jill Carnahan, Flatiron Functional Medicine One of a growing cadre of doctors who have gained expertise in treatment of biotoxin illness, ISEAI Board Member Dr Carnahan, MD offers videos and blog posts that provide exceptionally clear guidance for patients. See the excellent blog post, Your Definitive Mold Clean Up Guide.
Mold Illness Made Simple This self-paced 8 module, 18 unit online course for patients and indoor environmental professionals is offered by ISEAI Board Member Dr Sandeep Gupta, MD. Dr Gupta treats patients suffering from biotoxin illness. The website includes blog posts and interviews with experts.
Paradigm Change This site, maintained by Lisa Petrison, offers thoughtful blog posts and a rich collection of resources for people seeking to learn about mold illness, including a long list of doctors who treat biotoxin illness.
Toxic Mould Support Australia Resources and FAQs for Australian and New Zealanders dealing with biotoxin illnesses including mould illness/CIRS.
Support and information groups on biotoxin illness
Because biotoxin illness, also called toxic mold illness, acquired environmental illness, or chronic inflammatory response syndrome (CIRS) is a complex, chronic condition, it is incredibly useful for patients to participate in discussion groups with others who have similar health problems. Patients who suffer from biotoxin illness encounter new questions every single day. Many of them are overwhelming and urgent. Topics include, for example:
- Figuring out if our homes or offices (or both) are making us sick
- Finding safe housing—first temporary housing, and then longer-term housing
- Deciding what if anything to bring from a moldy home to a new home
- Learning what products to use to clean laundry, furniture, etc.
- Dealing with doctors, employers, family members and others who “don’t believe in” or don’t understand our illness
- Learning to recognize our own symptoms so that we know when we are getting biotoxin exposure, and learning to leave places we are reacting to
- Learning how to decontaminate after we have had biotoxin exposure, including immediate bathing and changing clothes
- Figuring out what stores, restaurants and friends’ homes are safe to enter
- Learning strategies to help our bodies to dump mold toxins, including taking binders, Epsom salts baths, outdoor time, saunas, etc.
- Learning to clean and maintain our homes to meet our health needs—including cleaning and dust control, reducing clutter, getting rid of contaminated items, upgrading or cleaning HVAC systems, using air cleaning equipment, monitoring for water intrusion
- Finding bedding and furniture that we don’t react to
- Finding doctors, mold consultants and remediators, duct cleaners, and other service people who will help us to make our homes safe
- Learning about the complex issues of human biology involved in our illness, and learning about supplements and strategies that can help us to heal
- Dealing with the family stresses, financial burdens, life changes, losses, anxiety and depression and other burdens that seem to come with this illness
- Connecting with others who are dealing with biotoxin illness to learn strategies and to get support for the daily challenges that confront us.
We need good doctors who are up on the evolving approaches to treating this illness, and who will help us to assess our health status and to take steps that will aid us in getting well. But we also need each other. The learning required to manage this illness is like drinking from a fire hose. In the online discussion groups, there are new people who are just starting up the learning curve, and there are others who have years of experience to share. We try to help one another.
Because so many of us are struggling health-wise, the easiest mode of communication with other patients is through online discussion groups. Many of these groups are on Facebook. There are numerous groups that are relevant, some for people with CIRS/toxic mold illness, and others for related illnesses, including Lyme disease, Epstein-Barr virus, chemical sensitivity, and others. Below are listed some of the biotoxin illness groups.
Toxic Mold, CIRS and Lyme Disease Support Group (large membership)
Local and regional groups
It is extremely helpful to find others who live in your area who are dealing with similar health issues. There are a growing number of local or regional online support groups, where you can help to find local resources and make friends with other EAI patients who are nearby. These groups help people to overcome the isolation that burdens so many of us. Here are some of these groups.
Articles, books and films
Here is a short list of articles, books, and films that are helpful to patients seeking to learn about EAIs.
Scott Forsgren with Neil Nathan, MD, and Wayne Anderson, ND, Mold and Mycotoxins: Often Overlooked Factors in Chronic Lyme Disease, Townsend Letter 2014. This article provides a helpful introduction to biotoxin illness and its relationship to Lyme disease.
James Hamblin, The Looming Consequences of Breathing Mold, The Atlantic, August 30, 2017. This article focuses on the terrible health consequences of water damage to buildings caused by floods.
Moldy, a documentary film by Bulletproof Films (2015). Moldy is a gripping documentary that explores toxic mold and how it has become a modern-day health problem of monumental proportions that affects us all. Moldy includes interviews with some medical experts on the health consequences of biotoxin exposure, and interviews with mold survivors, sharing their stories of illness, treatment and recovery.
Julie Rehmeyer, Through the Shadowlands: A Science Writer’s Journey into an Illness that Science Doesn’t Understand (Rodale Press 2017). This is a wonderful memoir by a writer who was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome and was so ill that she often could not walk, discovered that mold exposure was a central cause of her illness and then was able to heal.
Unrest, a documentary film by Jen Brea (2017). This award-winning documentary chronicles the filmmaker’s quest to overcome disabling myalgic encephalomyelitis, shares the stories of several other profoundly ill patients, and documents how mainstream medicine has turned a blind eye to the growing epidemic of a chronic illness that afflicts mostly women. Jen discovers that avoiding exposure to mold improves her health. Jen is a co-founder of #MEAction, a global health network for people with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).
Paula Vetter with Lori Rossi, and Cindy Edwards, Mold Illness: Surviving and Thriving – A Recovery Manual for Patients and Families Impacted by CIRS (2017)