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The Complexity of Mold Illness Recovery

by Catherine

Why am I STILL Sick?

When Symptoms Persist Even When You Are Out of the Mold and Have Done EVERYTHING to Heal

Mold illness recovery is difficult. Most of us desire and need a solid support system of friends, family, and medical professionals to help us get through all of the hurdles. As a matter of fact, you probably found this blog and are reading this post right now, because you were searching for mold illness information online as part of your need for support. You may have even been seeking a shared experience with others who have also been through mold-triggered illness. I hope you found that here. I wanted to provide a supportive and positive community with this blog where stories are shared, and we can help each other feel somewhat normal again.

Knowing that you are not alone and that there are other people out there who also have to be vigilant about indoor air quality, practice mold avoidance and mold maintenance, and who have been through the trauma of losing a home or many of their possessions to mold can be comforting and provides hope. Mold illness is also very isolating (mold is everywhere and when you are forced to avoid it, socializing normally is sometimes hard), so I am grateful for the sense of community that writing about it provides for me. I like sharing what I have learned to help others recover. In doing so, though, I have identified one area of mold illness recovery that is consistently more difficult for me to be as helpful with on the blog–the “how I recovered my body from mold” part of this illness.

Obviously, I am not a doctor or medical professional of any kind, so I am ALWAYS careful with any information or opinions I present as far as body care and treatment are concerned. No matter how much personal experience I have with mold illness, it does not make me qualified to give anyone else medical advice. Thus, whenever I write about recovering my body from mold, I try to only speak from personal experience and perspective, and am careful not to offer counsel or instructions to others on that front. I know what protocols, treatments, and supplements work for me and my family, and filter all information I share with you through that frame of reference. Nevertheless, I find more and more that while STEP #1 (the hardest step of getting out of the mold in whatever form that takes, remediation or leaving) works for ALL of us in some capacity, STEPS #’s 2, 3, 4, and so on, of curing mold illness in our bodies, are not always as straightforward. As a matter of fact, the lack of positive response to even maximum treatment for some patients can be monumentally frustrating and, in the words of one reader, “just doesn’t make sense.”

This topic of unshakeable chronic illness from mold actually hinges on one central question, in my opinion:
Why do some of us recover from mold illness quite quickly just from leaving the moldy environment, while some of us continue to deal with debilitating symptoms even when we are doing EVERYTHING (aka “maximum therapy”) to heal?

(Note: “Maximum therapy” in my definition in based firmly in the pillars of Dr. Dennis’s Environmental and Body Protocols, which include living in a mold-free environment, binding the mold toxins with a pharmaceutical or natural binder, properly detoxing the body of the mold, and providing nutritional, hormonal, immune, and sometimes medical–surgery or office procedures–or pharmaceutical support—antifungals–to take you the rest of the way. All mold illness therapies need to be performed under the guidance of a licensed health care practitioner as there are too many options, bad advice, and advertsiements out there that could steer you wrong or cause more sickness. Blood work is also required.)

If you have been asking yourself that question and feel frustrated to tears with your lack of progress with recovery, I think I may be able to offer some insight. You see, I have been at this point myself. Last spring, I actually hit a plateau with my health and recovery. I felt like, while I wasn’t debilitated and “sick” anymore, I also wasn’t getting any better anymore either. My fatigue still lingered, I still had occasional insomnia, and my GI issues and colitis were not totally healed. My progress had stagnated in a place between sickness and health. For me, that was not acceptable, because I knew things could be better and that I needed to tweak something to help me make that jump. I just didn’t know what that something was. I was living in a mold-free environment, I was doing active, but gentle ongoing detox, my nutrition was on point, my hormone and thyroid levels were where they needed to be, and I was supplementing with everything my doctor and naturopath prescribed. What was I missing?

Well, it turned out that I had an underlying infection that I needed to address. Once addressed, my health has made tremendous progress, especially in terms of my energy levels. I absolutely feel like I am closer to my “old self” now, more than ever. I didn’t just discover this infection piece overnight, though. I KNEW something was off, so I kept digging with the help of my doctor to figure out what is was. It was during that digging that I learned about some areas of this illness that may warrant further exploration, especially if recovery feels elusive for you. I am definitely not claiming to have all of the answers here, but I do feel that if you thoughtfully read through this list, you may have a similar aha moment that could lead you to improved health.

Things to Consider if You Are Still Sick (But Are No Longer Living in a Moldy Environment)

(Note: As you read through this list, the most important, common thread that should be woven throughout my message is the fact that the persistent inflammation or inflammatory response is what keeps you sick. The key is to FIND the source of the inflammation—is it still mold, or is it something else? My list is designed to help you root out that source. Inflammation doesn’t just make you feel ill, it leads to a whole host of other chronic diseases that can take center stage and distract from recovery.) 

1.)   While the CAUSE (aka mold) of our illness is known, we need to also consider our toxic burdens prior to the mold exposure. You may have an underlying toxin, virus, or infection preventing your recovery progress. The best place to start is always from the beginning—the CAUSE. Just like none of us are the same, no person’s body burden prior to the mold exposure was the same either. What I mean is that we all had the “toxic soup” in our environments of mold, bacteria, VOCs, particulates, viruses, etc., and in our bodies (our “toxic loads/burdens” from viruses, toxic exposures, and previous infections and illnesses from birth up until the mold exposure) that set us up for mold sickness. Some of us also have the dreaded HLA DNA marker that makes us genetically predisposed to have an extreme inflammatory response to mold. In other words, while the named cause of our sickness may be mold, the actual cause could really be so much more. For example, many mold patients find out that they have a Lyme infection, AFTER being diagnosed with mold illness. I also found an underlying chronic infection to be hindering my recovery. Underlying toxic burden or infections can cause the body to continue to be symptomatic. This concept also shows why our bodies don’t respond to treatments, supplements, and pharmaceuticals the same. We are all putting those capsules, pills, and treatments into our own unique vessels with our own, unique systems, that have a medical and toxin history to process them. If you are still experiencing symptoms, I encourage you to speak to your doctor about testing for underlying issues, like heavy metals, Lyme and its co-infections, bacterial invaders, parasites, MARCoNs, etc. I realize that this is a huge concept and one that is difficult to describe and understand completely, because the evidence and science around it is ever-evolving, so for the purposes of this post, I am just going to leave it at that for now, but this is definitely worth investigating. (If you are interested in reading more on this topic, HERE is my post on toxic burden.)

2.)   Every moldy or “sick” indoor environment is different, and there is ALWAYS more than just the mold making it “sick.” Don’t be afraid to dig deeper into your environment for things in addition to mold that could be making you sick. The obvious piece of the puzzle is the actual mold. But, while I may have been made sick by an overgrowth of penicillium mold in my bedroom supply vents, there may have also been water damage in a wall in my home that had Aspergillus spores, or I may have also been exposed to E-coli bacteria that was growing in my water-damaged office building. (Note: The late Jack Thrasher once wrote that chlamydia and mycoplasma—antibiotic resistant bacteria—are found in almost all water-damaged buildings. Thus, when he was investigating a building that had mold, he knew that the mold was just the tip of the iceberg for all that was going on around it in terms of bacteria, viruses, particulates, microbes, VOCs, etc.) Not many mold doctors discuss these details, because they do not seem to matter in terms of treatment. Once a person is sick, mold becomes the obvious focus, but the more I learn about mold illness and the intricacies of the veritable “toxic soups” that are going on inside “sick homes and buildings,” the more I am starting to believe that these details may really be important keys to effective and successful treatment. It is also my opinion that this may explain why some of us can successfully remediate our homes, while others do everything to get rid of the mold, but continue to get sick. I’ll just put it out there that if you have fixed the water damage/intrusion or mold source and have physically removed and topically remediated the mold, but are still reacting, there may be something else you are missing—like bioaerosols or microbial VOCs, etc. (An extensive list of contaminants commonly found in water-damaged buildings can be found HERE.) So, if your home is testing “clean” for mold, but you are still sick, I encourage you to look deeper on this front. This is where a certified environmental inspector or hygienist can be such an important asset, because they are trained to look and test for more than just mold. This is also why I advocate so fervently for ongoing mold maintenance or mold hygiene, even when you are well.
I find that by consistently purifying the air, cleaning and treating my environment for mold with EC3 products that are non-toxic, naturally-derived, antifungal and antimicrobial, I am keeping my surroundings at a level of cleanliness that is healthier for me and my family, because I am stopping the growth or entrance of fungal, viral and microbial invaders all at once. I am also not adding any toxins to my environment as I do so. A focus on clean air is essential to successful recovery, and all of the EC3 products reduce the fungal load in the air.

3.)   Even though you are not being exposed to mold in your home anymore, you may be being exposed to mold somewhere else. I know that the prospect of this sounds like hell all over again to someone who has been through a remediation or the upheaval of moving. But, if you are still sick, it is worth some additional investigation. If you are still sick, there is a high likelihood that you are still getting consistent mold exposure. Common places where people find they are still being exposed tend to be gyms, cars, school, or at work. Many times, if people work or go to school in older, humid buildings, a manufacturing setting, or somewhere that there is a lack of well-ventilated, centralized air conditioning, they find that the mold in their workplace/school is an equal, if not more aggressive contributor to their illness. You can always purchase some EC3 testing plates or Immunolytics diagnostic testing plates to actually do some information gathering. If you find that you are being consistently exposed somewhere other than your home, you definitely need to find a way to eliminate that exposure. Otherwise, your body will not be able to fully recover the way that you want it to.

4.)   The treatment strategy you are using may not include everything you need to get well, or may not be the right one for your body. There are many different treatment strategies out there. Most share common principles and frameworks, but each doctor takes his/her own approach. Each includes different supplements, methods, protocols, etc. We tend to stick to what we know and what feels comfortable. Sometimes, we stick things out even if they aren’t working for us.  I definitely adhere to what cured me and my family–Dr. Dennis’s protocols. There are other people who adhere solely to the Shoemaker protocol. That worked for them. It didn’t work as well for me. That doesn’t mean it is bad or doesn’t work, it just means my body is different and needed something different. The important thing here is to listen to your body. Have definite logistics and testing in place for measuring and charting your progress. The VCS Test is an excellent tool for this. (HERE is my post on VCS testing.) If you are not making progress and not feeling any better after a few months of working with a particular doctor or being on a particular protocol, feel empowered to ask for additional help or to explore other options.

5.)   The foods you are eating are not optimal for healing from mold illness. If you are experiencing symptomology that includes one or more of the following, oral thrush, reoccurring vaginal yeast or urinary tract infections, skin and nail fungal infections, brain fog, and intestinal distress, there is a high likelihood that you still have Candida or yeast in the body. Part of Dr. Dennis’s Body Protocol includes altering your diet to one that does not include processed foods, soy, sugar, and refined carbohydrates. (Note: Candida has a sugar receptor. Once inside your body, when Candida encounters sugar, it morphs into its hyphal form, which can penetrate tissues. This is why so many mold patients experience antifungal resistance, “leaky gut,” and food intolerances.) Dr. Dennis wants you to be eating in a way that creates an inhospitable environment for yeast to thrive inside your body. This means eating lots of leafy greens and non-starchy vegetables, healthy proteins, berries, healthy fats and oils. (HERE is a link to the basic principles of the Candida Diet.) I have found that my health is best when I am adhering to these dietary principles. I am also a firm believer in the idea that food can heal you as much as it can hurt you. If you think about food in a similar way to medicine, you can see just how beneficial to your recovery that it can be. In other words, if you are suffering from mold illness and are continuing to eat foods, like sugar cereal or artificial sweeteners, that feed the yeast, you are not going to get well.  Diet is critical because it will waste all of the other efforts. Also, if left untreated, a Candida infection can spread and become systemic, moving to other parts of the body, most seriously to the membranes around the heart and/or brain.

6.)   You are drinking unfiltered water. This may sound extreme to you, but it has been my experience that you cannot drink unfiltered tap water and expect your body to heal. This is also a lesser-known crucial piece of righting the body. The unfortunate truth that our municipal water supplies are filled with things like chlorine, chemicals, antibiotics, etc. is one that mold patients cannot afford to overlook. Drinking unfiltered water disrupts homeostasis in the body. If you are drinking toxic additives in your water every day, you are actually assisting the yeast growth inside your body, and making your body work overtime to detox those invaders. All of the additives to our municipal water supplies disrupt the gut microbiota. Without a healthy gut microbiome, yeast can take over and continue to cause systemic issues. Simply addressing this piece of the puzzle by installing a water filtration system, or by drinking only purified or spring water can lead to a marked positive difference in your health.

7.)   You have not addressed your pituitary system. Mold can be a fierce endocrine disruptor. This means that exposure to mold can cause increased production of certain hormones, decrease production of others, imitate hormones, turn one hormone into another, interfere with hormone signaling, cause premature cell death, compete with essential nutrients, bind to essential hormones, and accumulate in organs that produce hormones. Pretty scary stuff, especially when it is happening to you. This is why it is important to have your doctor test and monitor your HGH, thyroid, and cortisol level as part of your treatment. Thus, if you are doing all of the other treatments, but are still fatigued, or are still experiencing insomnia, or extreme moods swings, you may need some pituitary and hormonal support to right the ship. This is also why I continue to use CellTropin to support my pituitary, even in recovery. This additional homeopathic support helps me to function optimally, because my endocrine system was so taxed for so long.

8.)   You may have an MTHFR deficiency or mutation. The MTHFR gene provides the directions to produce an enzyme called methylenetetrahydrofolate reductase. This enzyme is responsible for amino acid balance, DNA synthesis, and repair, regulating gene expression, and converting inactive folic acid or folate into the active form your body uses, among other things. A main reason why mold patients need to be concerned with MTHRF is because, if inactive or deficient, your body will not be able to metabolize and detox risky toxins. Thus, no matter how many binders you are taking, or how aggressively you detox, you will stay sick. It is wise to ask your doctor to test for this if you are not progressing in your recovery, because you can alter things in your diet and take targeted supplements to counter this. Targeted detox and liver-specific support can also be beneficial for those who have this condition, because they can aid in detoxification.

This list of suggested areas to investigate if you are not getting better is by no means all inclusive. I just look at it as a framework that will help you evaluate your treatments and your progress and either check some things off of the list or be encouraged to dig deeper. The good news is that our bodies are incredibly smart and resilient. If we look, listen, and assess what they are telling us, we usually can find answers. Your “new normal” does not have to be subpar. You deserve health just like anyone else. You deserve to feel your best. If you are doing everything by-the-book and are STILL sick, there is probably something more to the picture that, once tweaked or corrected, could bring you the wellness that you seek.

Questions, comments, suggestions? Write to me at catherine@moldfreeliving.com.

 

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4 comments

Rezzy August 25, 2018 - 12:04 pm

Thank you so much. As I have been on Shoemaker protocol and not getting better at all. Just keeping a handful of symptoms at bay. I’m interested in dr.dennis protocol, your article is very interesting and I pray will help me get to the root cause of my illness. Mold is truly just the surface.

Catherine August 28, 2018 - 3:01 pm

Thank you so much for reading. I hope some of the information here is helpful to you. I am happy you are finding some ideas on alternative avenues to healing from mold. The Shoemaker protocol did not work for us either. We were just too toxic to start binding right away and were made sicker by following it. We found that totally getting out of the exposure, strict adherence to the diet, supplementing correctly with vitamins/minerals/Sinus Defense/CellTropin really worked for us. Then, we were able to start using binders and to detox much more effectively. Still in continual detox phases now, which really seems to help. Doing the daily sinus rinses and using the CitriDrops Nasal Spray is also tremendously helpful for me and my children. It just helps stop the entrance of mold to the body at the source.

Beverly Cook August 21, 2018 - 11:17 pm

Catherine, once again you took an extremely complicated topic and explained it so that it is much easier to understand. Your information here is priceless for those still struggling to BEGIN their recovery, or for those whose recovery has STALLED. I have found that we can never stop reading, questioning, even challenging our health care providers when it comes to our recovery from mold toxicity. I am waiting anxiously for this month’s test results as I am actually feeling and seeing improvement. Now I want to see the numbers! The hardest part for me right now is the realization of how quickly I can become re-exposed in places I never dreamed would be a problem for me. Friends’ homes, our groomer’s, even a local health food market all brought on horrific headaches, gut and joint pain, and debilitating fatigue–all which set me back weeks in my recovery. This cunning illness seems insurmountable at times, but we can never lose our focus on completely regaining our health no matter what it takes. Thanks for another encouraging article.

Catherine August 24, 2018 - 1:11 pm

Thank you! The good news is that all of us who never give up are finally sparking some solid medical research by the best and the brightest in the fields of medicine and toxicology. Those studies are supporting what those of us who are affected have know for years–this illness is incredibly complex and does not usually just go away when the mold does. There is a deeper picture of toxins (like mold) and their ability to hack into all body systems to create chronic illness and sub-par health. The process of healing is therefore ongoing and a true journey. I think we are going to see more and more people jumping onboard to PREVENT environmental illness, rather than face battling it. I have lots of hope. We just have to keep pushing and asking hard questions. Thanks, again, for writing!

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