7 Pieces of No-Nonsense Advice for Navigating Mold and Mold Illness
By Catherine Fruechtenicht
I write a blog about mold and environmental illness. My blog, Mold Free Living, covers everything from my personal journey with mold illness and the major remediation of our home and belongings, to interviews with physicians, naturopathic doctors, and environmental professionals, to product reviews, treatments, tools, and supplements that I have found helpful. In other words, if it has anything to do with mold or fungus and your health, I do my best to include helpful information about it.
It was a long, hard journey that got me to the place of starting a mold blog. I endured much sickness, confusion, trial, error, personal experimentation, and research before I felt I had even earned the stripes to launch such a site. To be completely honest, the hardship and confusion of my family’s nightmare with mold and mold illness pushed me into this somewhat strange line of work—I didn’t really choose my blog as much as it chose me. I saw a real informational need for people thrust into a position of having to deal with mold, because when I was desperately searching for hope and info, I couldn’t find any good, concrete resources online. I thought that sharing the helpful information and resources I had compiled and putting it out there on a blog for others to find and reference, could maybe help someone else in some small way. The blog has since grown and now is my heart and passion. The funny thing is, even though I have been working on my blog for about three years at this point, I must admit, I still hesitate to tell some people about what I do and why I do it. Why? Well, because I find that, for many reasons, mold tends to be a touchy and controversial subject and mold illness is still very misunderstood.
Mold Can Be A Touchy and Complex Subject
No one, unless you are someone who is faced with mold-triggered illness or with having to figure out remediating mold in your home, really wants to talk about or deal with the whole “mold thing”. For some, the mere mention of mold, elicits eye rolls, because they don’t believe that mold is even an issue—these are the folks who have lived or worked in moldy places with zero known health issues. Others have seen the recent news coverage about the many families harmed by mold and sub-par conditions in military housing or in schools and have taken an interest, and believe that the problem is real, but don’t know much more than that. Then, there are those who, like me, have been through a mold situation, or who know someone else who has and now realizes the complexity, stress, and health fallout that can occur. We are a small group, and we try to spread the word, but from what I can tell, the communication tends to be quite circular, with us only speaking to others who are also caught in a mold nightmare and are looking for answers. And, even though from a news standpoint, the health crisis with mold seems to be spreading, the fact that mold illness is a threat and could affect anyone at any time is not common or accepted knowledge. Thus, mold continues to be a can of worms no one really wants to open and a controversial topic that elicits mixed reactions and emotions.
My Mold Story
To give you a more personal look into who I am and where I am coming from with all of this, I’m going to share a very abbreviated version of my story with mold:
Almost four years ago, we purchased and moved into a home with mold growing inside the air handler and throughout the ductwork. We had no idea, were not really aware of the health dangers of mold before that, and had paid for all of the standard home inspections prior to purchasing the home—the house passed all inspections with flying colors, I might add. I also want to say for anyone who is curious that our home, in the living spaces had no visible mold and no tell-tale musty odor. There were no obvious signs of water damage or leaks. Looking back, the home did have a strange, almost sweet smell that seemed odd and offputting to me, but I thought it could be made better by a good deep cleaning. The air quality was definitely not great with visible dust and particulates floating around, but it didn’t set off any red flags either. In retrospect, I do think we experienced a shorter exposure in a previous rental home before the move—some similar health symptoms had cropped up—but we were not there long and had returned to near perfect health after leaving that home. But, since every toxic exposure can prime you for the one that sends your body over the edge, I did want to mention that.
We moved into our new-to-us house (it was built about 20-years ago) and I began getting sick almost immediately. As my symptoms increased and nothing seemed to help me get better or to bring lasting relief, I became like a bloodhound, literally sniffing out and digging for every possible answer to my deteriorating health. I instinctively knew something was not right. The air inside the home felt heavy and caused me anxiety that I could not explain.
My children, especially my son, also had symptoms. It was one bout of sickness after the next–sinus infections, strep throat, headaches, gastrointestinal symptoms, muscle aches and pains, and unrelenting fatigue. I then was hospitalized for multiple bouts of foodborne illnesses (salmonella, E-Coli) and was eventually diagnosed with ulcerative colitis. In fact, I was so inflamed that a doctor feared intussusception, a condition in which one segment of the intestine “telescopes” inside of another, causing an intestinal obstruction (blockage), had occurred. Additionally, my son, who had some mild sensory processing difficulties before now needed intense therapy and sessions before school just to get through the day. His need for constant movement and touch made schoolwork and relationships hard. Doctors diagnosed him with ADHD and gluten intolerance in addition to the sensory processing disorder. I really felt like I was failing him. I was also having cognitive issues of my own. My once go-with-the-flow personality had evaporated, and I was angry, jumpy, anxious, and depressed. I was not sleeping at all, even though I was totally physically exhausted. My passion for running and teaching classes at the gym was tabled because I just did not have it in me to exercise. I was a physical and emotional disaster. At this point, my marriage was becoming very strained—I was no longer the woman my husband had married, and he was watching me spiral into a sort of mania as I became fixated on solving our health crisis.
We went to many doctors, specialists, an acupuncturist, a functional medicine doctor, and a psychologist. No one had answers or a diagnosis that led to any long-term relief in our symptoms. Finally, with the guidance of an astute ENT versed in treating fungal sinusitis, the mold connection to my symptoms was made. Long story short, the subsequent results of my nasal swabs and a mold test of my clothing led us to start investigating our home for mold. BINGO! The dots finally connected and we were able to embark on our journey of treating the cause—mold—and of finally, finally, and slowly but surely getting better.
Today, I still have some residual health and emotional struggles from all we went through, but I can confidently say that we are in a very good place and consider ourselves to be healed and well. We definitely remain vigilant about mold and our sensitivity to it and practice our own form of mold avoidance and mold maintenance/hygiene to stay well, but we are on a very good path and feel that the worst, as far as mold illness is concerned, is behind us.
My Top 7 Pieces of No-Nonsense Advice for Someone Trying to Navigate Mold Illness
So now that you know a little more about me and where I am coming from, I want to briefly do my part to bring clarity to any mold situation that you may be facing. Regardless of where you are with things, or if you have even begun exploring mold as a possible cause for your health issues, I don’t want anyone to feel paralyzed. The topic of mold may be controversial and difficult to navigate, but there are definite things you can do to help yourself get some clarity.
I do have a list that will follow shortly, but the first and arguably the most important step is to accept and recognize that, with mold, you are going to have to take the reins and be your own advocate. Sometimes you are the expert on your body and your health. Sometimes you will know when something is not right in your home or work environment, even if others are telling you it is fine. Trust your instincts and realize that your body is not failing you. Your body is infinitely wise and is doing everything in its power to protect itself. That may sound a little “woo woo”, especially if you are very sick, but not being frightened of your own body is essential to stay the course and get better.
Now, here are some concrete things you can do, in a step-by-step manner to make the course easier to chart and to slowly make progress towards solutions and feeling better.
1.) Educate Yourself As Much As Possible– Don’t be afraid to really get into the weeds and to do your own research on all-things mold. Thankfully, there are now many excellent online references and sites for those trying to navigate the complex world of mold-triggered illness. This list is not all-encompassing, but here are some of my favorite online resources for mold and environmental illness and mold remediation information:
- Sinusitis Wellness (obviously) is a rich resource with articles on everything from mold toxicity to chronic fungal sinusitis, mold remediation, testing for mold, and everything in between. Articles are written in a way that anyone can understand and the site can be searched and referenced by topic. While the site has a slight focus on the sinus-symptom-side of mold, it really is all-inclusive and covers everything mold-illness related.
- Mold Free Living (also obviously) sorry had to include it!
- The Centers for Disease Control Fungal Awareness Resource Page is a great informational hub and contains fungal disease information that many environmental illness sites do not. It also includes links to OSHA- and EPA-established guidelines for mold clean-up and remediation. I think everyone should visit the CDC site and explore the articles on mold at least once, because it will help to establish in your mind what most doctors are reading and referencing for mold-related information.
- Paradigm Change is a wonderful site that explores the role of mold toxins in chronic illness. The site is not limited to information on mold exclusively but includes articles and info on ME/CFS, fibromyalgia, chronic/post Lyme, MCS/EI, POTS, MCAS, Alzheimer’s, autism, and other similar conditions. Its founder is Lisa Petrison, PH.D. I also advise signing up for her newsletter as it is always full of information and additional resources that aren’t always talked about or available elsewhere. If you are particularly interested in mold avoidance and in what geographical locations are best for those with mold sensitivity, this site is the resource for you. Also included are many other mold sufferers’ personal stories, which definitely help make you feel less alone.
- Surviving Mold is Dr. Ritchie Shoemaker’s site devoted to biotoxin illness and chronic inflammatory response syndrome (CIRS). Dr. Shoemaker is considered to be one of America’s foremost authorities on mold, and whether you agree with his protocols or not, the site is full of information on how and why mold makes some people sick. He also includes links to his suggested testing for CIRS diagnosis and to his treatment protocols. The site is a little dense, but worth your time.
- Pub Med – Do not be afraid to dive into the scientific literature on mold. You can search the site by topic. You can read studies and analyses to see what science actually shows us about water-damaged buildings, mold, and health. You can also read about studies done on different treatments and drugs to see for yourself the efficacy and results. Not all articles and papers are full text or free, but you can definitely get lost in all of the wonderful information that is available there.
- The Healthy House Institute is a site that covers all things related to creating and living in healthy indoor environments. The site is not mold-specific but encompasses the whole home, which is crucial for anyone who is trying to get better.
- Better Health Guy Scott Forsgren created his site after a long-fought battle with chronic Lyme disease and mold illness. Scott even has his own podcast where he interviews professionals in the realm of environmental illness and functional medicine. Scott is one of the most intelligent and well-prepared interviewers I have ever listened to. If you want to really go deep and listen to and read about all that is happening at conferences and in current medical practices to help and treat those suffering from mold and other environmentally-triggered illnesses, this is the site for you. Scott also has a newsletter that is well worth subscribing to for its informational value.
- The Mold Masterclass website includes valuable information and insiders’ tips on finding, testing for, and preventing mold in your home. There is an option to purchase an online course if you want to know everything there is to know about mold in indoor environments, but the free information available on the site is enough to get anyone started.
- Create Your Healthy Home is a site started and maintained by Council-Certified Microbial Consultant May Dooley. She uses the principles of Building Biology to help clients create healthier homes. She has been inspecting homes for over 24 years and offers tips and tricks for finding and remediating mold on a budget. She also offers insight into mold testing and into evaluating the safety of your home for EMFs, VOCs, and other potentially harmful toxicants. I love her no-nonsense way of writing and sharing information.
- Mold Help for You is a site started by Jennifer Nitrio to help others navigate the world of toxic mold and mold illness. She started her popular site Hybrid Rasta Mama after a brush with toxic mold in her own home. She has since gone on to become a certified mold inspector and shares a wealth of informational and personal tips and stories on both sites.
- ISEAI or International Society for Environmentally Acquired Illness is a 501(c)(3) nonprofit professional medical society that aims to raise awareness of the environmental causes of inflammatory illnesses and to support the recovery of individuals affected by these illnesses through the integration of clinical practice, education, and research. The site is a wealth of information for help navigating environmental illness. It is both for professionals and mold-illness sufferers. You can even search for a mold-literate practitioner by geographical area.
- Dr. Jill Crista’s website offers information, quizzes, video clips, recipes, product links, etc. devoted to “moldies” and those suffering from mold-triggered illness. Dr. Crista’s approach resonates with me because she treats the whole person and writes and speaks in a way that is easy to digest and understand. She also trains other practitioners in treating moldy patients. Her site lists practitioners by geographical area who have completed her mold course.
I could go on and on, but that list should be enough to get you started anyways!
2.) Start Testing for Mold and Looking for Moisture Sources/Issues in Your Home – You cannot be afraid to start doing some testing to see if you have a mold problem. If you don’t test, you cannot know for sure. Testing can help you find out if there is a mold issue and the source of your issue. Testing is the ONLY thing that can also lead to the solution. Also, mold cannot grow without water. If you start looking around for potential sources of water intrusion or excess humidity, you might be led to the source of your mold problem. You don’t always have to rely on an expert to find your answers. Start with inexpensive mold test plates, and then go from there. If you prefer hiring a professional, the American Council of Accredited Certification website is a good place to start looking for help.
3.) Be Willing to Take a Mold Sabbatical – This sounds serious, but is, in fact, quite simple. A mold sabbatical just means leaving your home for 5-7 days and taking none of your things (as much as you can reasonably do) with you. A mold sabbatical will get you out of the mold exposure long enough for you to have a sense of whether or not being away from your home and your things makes a noticeable difference in your health. I know that this helped me a lot. Getting away also gives you a moment to think and to realize that you can find solutions and health again.
4.) Start Employing Some Basic Mold Maintenance and Band-Aid Approaches for Mold in Your Home – Every home on the planet could benefit from this advice—not just a home with a mold problem. Why? Well, because mold is everywhere. It is an unavoidable allergen that is tracked in from the outside and that comes in via air leaks and cracks in our homes. It is not feasible to want to have a mold-free home. The goal is to have a mold-safe home. This means preventing and attending to water incidents and issues that make molds that are not supposed to be inside our homes flourish. I have MANY posts about mold maintenance and cleaning for mold on my blog. Even if you start with some basic mold-specific cleaning products, you will lessen the mold burden of your home. Some of the “bigger” tools, like the cold fogger can even be used as a Band-Aid approach to make a home safer until a family can move or can fully remediate. The important thing is to do SOMETHING. You can always make the situation better and less inflammatory to your body. So, do what you can. See if you feel better. Then, go from there.
5.) Start Helpful, Self-Treatment Actions – I am NOT saying that you do not need a doctor for mold illness treatment. But I am saying that there are basic actions you can take to help yourself until you find a doctor to help you. Some of the most basic and least expensive actions can quell inflammation and stop the immune onslaught from mold exposure. Those actions include the following:
- Nasal Rinsing with saline solution and an added antifungal – The nose is the main entry point for mold to get into the body. The nasal mucosa also gives mold somewhat direct access to the bloodstream and brain. You want to do all you can to prevent that by rinsing your nasal passage 2-3 times per day.
- Shower and wash your hair before going to bed each night – This sounds crazy, but showering and washing your hair prevents you from bringing mold spores to bed with you each night.
- Sweat – Whether with gentle exercise or with passive sweating in a sauna, hyper-thermic action of any kind can boost immunity, increase blood flow and oxygen to your cells, boost mood and metabolic function, and effectively remove toxins from the body. Since reading the Finnish study on sauna use, I am a convert and can’t tell enough people how truly beneficial sweating can be to your overall health.
- Quit drinking tap water and eating sugar and gluten – Switch to mineral-rich and non-contaminated water sources that do not contain chlorine or fluoride. Tap water fosters yeast in the body. When you are living in a moldy home, you are inhaling mold and yeast constantly. As much as possible try to prevent feeding that yeast. Eliminating sugar and gluten from your diet will also help this. Yeast and candida have a sugar receptor that can transform them into hyphal forms. The hyphal forms can create holes or leaks in your small intestine causing leaky gut and food intolerances.
- Use immune-building supplements – For whatever it is worth, I like Complete Thymic Formula and Sinus Defense. Both help make your immune system more effective at battling mold and bacterial antigens, while not increasing inflammation. The Complete Thymic Formula also replaces nutritional deficiencies created by stress, leaky gut, and poor food digestion and absorption—all things mold sufferers have issues with.
6.) Find a doctor who understands and treats environmental illness – I have a post on my blog about how to go about doing this. It is important to have a partner and an advocate who knows how to treat mold. Both the American Academy of Environmental Medicine and The International Society of Environmentally Acquired Illness websites have tools that you can use to find practitioners in your area. With an environmentally trained practitioner, you can stop spinning your wheels and embark on treatments that will help. These professionals understand what you are going through and have many resources to share. If nothing else, use the search tools, make some phone calls and go from there. I found that even if a particular doctor wasn’t taking new patients, they could point me directly to a colleague who is.
7.) Recognize that You Don’t Have to Make Every Decision and Do Everything Immediately – Once you have finally identified that mold is the issue, it is easy to want to solve the problem immediately. But, leaving or remediating an entire home and all of your belongings is a HUGE job. Take it one step at a time. If you can’t figure out what to do with things, buy sealable plastic bins and put those things in the bins. Deal with them later when the dust has settled. You don’t have to do it all or make every decision immediately. This will lessen your stress and help you to keep your health at the top of the list.
I hope that information is helpful. If you like this article, I would love for you to check out my blog. I also love hearing from you. Feel free to comment below or to email me at firstname.lastname@example.org.