Home Mold Prevention Making Sense of Mold Illness Treatment: Everyone is Talking About Mold, But Does Anyone Have the Answers?

Making Sense of Mold Illness Treatment: Everyone is Talking About Mold, But Does Anyone Have the Answers?

by Catherine

With All of the Toxic Mold “Talk,” Latest Detox Protocols, and Newest Remedies, Are We Actually Any Closer to REAL Solutions?

How is it that so many people are suffering from illnesses triggered by mold and other contaminants in “sick” indoor environments, but there still remains no general understanding, widespread medical acceptance, definitive mold illness treatment protocol or true answer for healing?

Similarly, how can so many people be in desperate need of medical interventions for mold toxicity, but, yet, most medical doctors are still not even asking patients about their environments or considering the possibility of mold as the cause for illness? Without a sufferer being able to get a correct diagnosis, there certainly can’t be a cure, right?

This can be so frustrating!

It doesn’t seem to make sense or like it should be that difficult to identify and treat illnesses triggered by mold. But, and for reasons I hope to illustrate in this post, it is, unfortunately, not that simple.

Compiling What We Know

When you do a deep dive into the scientific literature on water-damaged buildings (aka moldy indoor environments) and illnesses/diseases associated with residing in them, the history of reports on mold-related illness is actually quite long and convoluted. The only true medical cautions about humans spending time in moldy spaces are for children, the elderly and the immunosuppressed, as they are more susceptible to fungal infections and respiratory distress. Most, if not all, qualitative fungal research is focused mainly on contaminated food and agricultural products and diseases having to do with fungal infections such as farmer’s lung, and systemic infections acquired by transplant recipients or already sick hospital patients. These studies and literature date back 30 years or more. The definitive pronouncement about inhaled mold spores in everyday environments as the source of illness doesn’t occur until the Mayo Clinic study published in 1999 that links chronic sinusitis with an immune system response to mold and the presence of fungus in the sinus of those patients.

After that came a distinct influx of research and toxicological studies on water-damaged buildings sparked by the findings and work of Dr. Ritchie Shoemaker. His work came onto the scene in the 2000’s (his site remains the top resource for mold illness treatment info on the web today, and he is still publishing studies and patient findings) forging the connection between biotoxin exposure (in indoor environments and otherwise) and the chronic inflammatory response, which he coined Chronic Inflammatory Response Syndrome (“CIRS”).  CIRS is diagnosed in patients whose bodies initiate an all-guns-blazing immune system attack on toxic mold antigens that never turns off, and thus begins to affect all systems in the body, causing malfunction, inflammation, and sickness on a large scale. His work identified various biomarkers for testing and diagnosis and a genetic HLA-DR susceptibility to such an inflammatory response from biotoxin exposure.

Shoemaker then went on to develop a comprehensive treatment protocol (14 steps to be systematically worked through depending on where a patient falls in the “Biotoxin Pathway”) that was pioneering and helpful to many sufferers and medical practitioners seeking to help those affected. Unfortunately, Shoemaker’s original modality hasn’t evolved much and hinges on expensive lab testing and a NeuroQuant brain MRI for diagnosis. The literature available for patients is also confusing, as is a rigid adherence to medications and sometimes unnecessary steps that focus on rebalancing those specific lab markers, regardless of how the patient feels or is progressing.

Most beneficial, in my opinion, is Shoemaker’s early work in extensively charting and describing the biotoxin pathway from how it begins with a genetic susceptibility and initial exposure, to the many ways and paths it can take with subsequent and prolonged exposure as it progresses. This work maps biotoxin inflammation and helps doctors and patients alike know how to identify symptoms within the typical CIRS profile. Knowing this information can help with treatment and with keeping up with patient improvement.

Dr. Shoemaker’s contributions have been priceless for identifying and treating mold illness, but fail to take into account such factors as 1) the individuality and constitution of the patient being treated, 2) whether or not the patient is suffering from fungal colonization of the sinus and/or gut and taking the “mold” with them wherever they go regardless of current environment, 3) the mechanism with which the toxins entered the body in the first place (inhalation, touch, ingestion), or 4) the crucial need for the patient to build future immunity or resistance to the mold.  Without these factors, healing can be achieved, but is limited, because future health and success in staying well are never addressed. It is also my experience that when, a subpar “new normal,” must be accepted, it becomes a genesis of frustration for many mold patients who feel like they have done “everything,” but will never be able to get well again. This is understandable, because totally upending your life with moving and/or remediation, spending thousands of dollars per year on doctor’s visits and medications, and following every step of a well-established and touted protocol should get you well, right? The best of what we have for treatment needs to evolve as the patients and their symptoms continue to evolve.

Like, I said in the beginning, unfortunately with mold illness, it is not always that simple.

Piecing Together the Rest of the Puzzle

Today, those of us dealing with mold illness have even more to sort through with confusing and disparate information that is all over the place. From diagnosis, to environmental testing, to remediation, to treatment, it seems like no two answers are alike or definitive. This is definitely a HUGE problem.

Here is my best attempt at crafting a list of reasons as to why this lack of answers and medical solutions still exists:

  1. Environmental testing and mold testing methods are ALL flawed.

    There is no ideal test or perfect way of diagnosing an indoor environment as “sick.” There are definitely some methods of testing that are better and more reliable than others, but no one test can tell you everything about the health of an indoor environment with one test. Also, the minute a test is completed, something, like a leak, could occur in a home that makes any previous test results null and void. My post least week is a perfect example of this. Also, we still don’t actually know what levels of mold in an indoor environment are universally safe and exactly what all of the molds that cause sickness are and why. We do have a grasp on some of the more toxic molds that exist, and the fact that even a miniscule presence of one of those molds is detrimental, but I believe that we are just scratching the surface of this illness with that information. I believe this because, time and time again, I have seen that this is an illness in which the affected patient is the best barometer of their environment. Meaning that even if an environment is tested and doesn’t reveal high levels of “toxic” molds, if a person is sick in that environment, I believe that the environment is NOT safe or healthy and must be treated or the person must leave that environment in order to get well. Thus, for mold-sick people, relying on environmental diagnostics is not always enough and does not always help their cause.  (Note: For one example, Alternaria which lives on trees and is considered by mold promoters to be benign, makes 80 mycotoxins, some which have been shown to be quite toxic in studies. Most often, it is found indoors in carpets, behind wallpaper, and around window frames, as it only needs a very small amount of moisture to survive.)

  2. The symptoms of mold illness are varied, affect different and multiple body systems simultaneously, change overtime, and mimic many other chronic and autoimmune diseases. In other words, the symptoms are as diverse and unique as those affected. While there are commonalities and symptom clusters that definitely point to mold as the cause for them, no two patients are completely alike. Thus, diagnosis is, at this time, still one of exclusion and of exhausting many other options first, making it difficult for those who are sick to get help or treatment early on in the illness when the prognosis is better and recovery would be much easier. In addition, similar diagnoses of exclusion with similar symptoms complicate identification by mold for such illnesses as fibromyalgia, chronic fatigue syndrome, Lyme disease, etc.
  3. In spite of growing recognition of illnesses resulting from exposure to water-damaged environments, current medical training provides very limited educational opportunities for medical students and residents to learn about the diagnoses and management of exposure-related conditions. Exposure is limited to the clinic and not in the community. Thus, with no “real” medical acknowledgement and teaching of mold illness occurring during crucial levels of clinical training, doctors are ill-equipped and lack the knowledge to look for, much less treat those affected.
  4.   Limitations to the current research include the fact that many of the studies on mold-related illness and disease are limited to animals or are relatively small human studies or case reports. Similar limitations exist to studying treatment outcomes, as typically patients have been ill with multiple symptoms for a prolonged period of time and are understandably eager to proceed with treatment, pursuing multiple treatment options concurrently. It requires a national disaster to create an accumulation of patients with identical causal conditions to address similarities in symptoms and diagnosis.  We are just now gathering significant data from the aftermath of Hurricanes Katrina and Sandy.  Because public health preparation for dealing with these natural disasters, was so insufficient at the time, our ability to study the data still remains limited. Perhaps with Harvey, scientists will better study  how elevated levels of mold in the reconstructed homes and buildings cause a multitude of health problems. And, while this research is important, it still does not take into full account the similar, but different health implications of moldy homes as a result of non-flood water issues, like excess humidity, plumbing or roof leaks, contaminated HVAC systems, or damp, unconditioned crawlspaces and basements.
  5. Since many of the agents used in the treatment of persons with mold illness are readily available and non-proprietary (aka mold avoidance, supplements, lifestyle change, diet, homeopathic products, sauna, etc.) funding for large-scale studies is scarce. Thus, research and further data collection are limited to those doctors willing to self-fund studies, or to those who independently publish research based on their smaller subsets of sick patients. This also allows many people to self-treat without seeing a doctor for a formal diagnosis or for the doctor to be able to chart patient progress and success as readily. While I feel that this can be a positive thing as it allows patients control over their own health, it sometimes extends the misunderstanding and lack of knowledge about the illness itself.
  6. “Sick” indoor environments contain more than just mold and people sick from mold usually have other underlying conditions to deal with as well. These go together, because they actually influence one another. Numerous other biocontainment’s–bacteria, VOCs, microbes, and viruses, etc.–create a veritable toxic soup that is creating sickness. Thus, sometimes more than just mold removal is required to heal an environment, and, sometimes other infections and sicknesses occur that cannot be attributed just to mold. Also, remediating or leaving the mold in a “sick” environment is just the beginning and doesn’t always produce the positive results in the health of the occupants that are expected. In other words, just like there are “layers” to the environment, there are also “layers” to each sick person, where the mold must be dealt with and then other viruses, infections, and illnesses peeled away to finally make the person well again. It is only by adopting a new lifestyle to reduce the total toxic load and peeling the onion of other environmental causes that the patients actually make a significant improvement.

Where Can We Go from Here?

Progress forward relies on every expert working in this space to collaborate and work together and to share ideas and knowledge—medical doctors, functional and holistic medicine practitioners, and naturopaths, indoor air quality professionals, professional builders, environmental inspectors, and building biologists, patients, their families and loved ones—each has something to contribute and something at stake.

I think that the first actions towards change will have to come from the patients themselves, though. I truly believe that this is an illness in which sometimes the patient is the expert. No one knows your body or environment like you do. Therefore, no one knows what is working for your body and making it healthy again like you do. And, as we are finding more and more with the success of limbic system training programs like Dynamic Neural Retraining (DNRS) and Amygdala Retraining, a belief that recovery is possible and a nervous system that isn’t programmed for fight or flight are as important or more important as the treatment itself. Thus, the patient being an active participant is incredibly important for treatment to work long-term.

Because I believe so strongly in promoting the possibility of fully recovering from mold illness and healing on this blog, I want to share some strategies I have taken with my own treatment that made a positive difference and have pushed me ahead of the curve with my recovery and return to good health. Implementing some of the following concepts may help you as well:

7 Tactics For Getting Over the “Hump” With Mold Illness Recovery:

  1. Try to learn all you can about mold/environmental illness and maintaining healthy indoor environments.

    I started with research on my specific symptoms and have progressed from there. I now read blogs written by others who have conquered this illness, books by respected practitioners in the field, journals and professional materials for the IAQ and building industries, scientific research on mold, etc. You name it, I read it. There are many tips and strategies that are not always mainstream that do work and that will become mainstays in your regimen. One example for me was incorporating digestive bitters into my life to help boost bile production to aid my body in natural detox. And, I find it to be true that the more you know, the better advocate you can be for your own health.

  2. Spend time logging and compiling information on your indoor environment, testing, treatments, supplements, food, and lifestyle actions that work or don’t work for you and why.

    This is particularly important in the beginning of your journey back to health. I have notebook upon notebook of written logs I kept on myself and my children since this journey began for us. Referencing these has been incredibly helpful for communicating with doctors and for knowing exactly what things are helping or hurting our recovery. The act of logging this information has also given me a feeling of control during some of the darkest times in our journey. It has also proven very helpful for cleaning strategies and mold avoidance practices that work.

  3. Recognize that you control your environment, and must take actions to make it as safe as possible. This piece can feel very overwhelming at first. Regardless of whether you decide to leave the mold exposure or to remediate it, something MUST be done for healing to begin. You cannot expect to get well if you don’t take action to get yourself out of the mold. This will be an ongoing effort as well, which requires you to test and inspect future environments and to routinely clean your current environments for mold to stay well. This blog is filled with tips and tricks on how to do that and the EC3 products that I use.
  4. Stop apologizing and feeling embarrassed about safeguarding yourself and your family from mold exposures. If an environment smells moldy, we leave. If I react to a piece of clothing or furniture I purchase, I return it. If someone sits next to me at a sporting event or church with the noticeable scent of mold on their clothing, I politely get up and relocate. I have recognized how much those things can affect and set me back, so I do something about them. Doing these things does NOT make you a bad person. It makes you a stronger and a healthier one.
  5. Be open to comprehensive treatment approaches utilizing all available nutritional, holistic, and detoxification strategies. I shunned many functional and holistic approaches in the past, because they didn’t seem to deliver short-term relief. Many were too comprehensive and required lifestyle and dietary changes and a host of supplements and homeopathic remedies that only “supported” healing. I believed that I had to feel worse to get better, and that doing more would be better and make me well faster. Nothing can be further from the truth when you are dealing with a toxin in your body. On the contrary, the most successful treatment approaches for mold illness are the most gradual and “whole-body” inclusive. This is because the mold has made the whole body sick in most cases. The approach I still use includes the use of sequestering/binding agents, antioxidant support, systemic, nebulized and intranasal glutathione, probiotics, nutritional support, and the correction of persistent fungal infections or symptomatic colonization. Also, the use of sauna and exercise for natural detoxification are invaluable in helping to restore health. If you are open to trying and sticking with the therapies that work for your body, you WILL get better. It is a lot to juggle, but is worth it, because you will continue to see progress and to heal.
  6. Check and test your home frequently and stay on top of maintenance that prevents issues that could cause mold to grow. This sounds overwhelming, but requires less knowledge than you think and is very empowering. I now know every nook and cranny of our home. I now feel comfortable in the attic with our mechanical equipment and standing on a ladder looking into the ducts. I check our air filters and monitor our humidity. I also walk around our home in the rain. Doing these things will make you proud of your home and more apt to trust that you will be safe there, because you know that there are no hidden surprises waiting to make you sick. Testing with inexpensive mold plates a few times a year also keeps you on top of which places and rooms need extra care or extra mold maintenance to keep levels down.
  7. Remember to get outside and to live your life without constant fear of exposure. Fear can paralyze you and keep you sick. Once you implement strategies that work and are living in a mold-free environment, you will stabilize and will become stronger. At this time, it becomes important for you to continue to live. Try not to shun friendships and social interactions, even if they are sporadic and short. This illness can be so isolating, because it involves avoidance of a toxin that happens to be almost everywhere. Knowing that, you definitely need to have plans on board for helping yourself stay well, but you need to incorporate those plans while being out and about and trying to live your life. Yes, there are still places I do not go, and things I do not do, (another area your log will be helpful, because you can look back to remember certain buildings or places to avoid) because I know that there is mold at those places, but for the most part I am open to almost anything these days. Creating a little “arsenal bag” of mold remedies will also help you to know that you will be ok, when you are away from home.

    I carry Sinus Defense, CellTropin, CitriDrops Nasal Spray, travel-size EC3 Spray, and personal air purifiers with us to treat and mitigate exposures right away. I also know I can return to my home anytime, where I can recover and stay well.

Are you having a hard time navigating this “mold” space? Are there tips, shortcuts, or ways of breaking things down that hep you? Please comment or write to me at catherine@moldfreeliving.com to share.
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