Learn How Mold PTSD Can Impede Your Recovery Both Physically and Emotionally
I have often cited the term “mold PTSD” when I write about my personal experience and health collapse from a hidden mold infestation in our home. Using the term is my way of trying to somehow illustrate the tremendous and lasting physical and psychological impact that mold and environmental illness had on me and my family. I also use it to show the way in which certain places, smells, memories and objects still sometimes trigger significant physical responses and a sense of panic inside of me. My responses are usually indicative of what I experience with a mold exposure, so for me this takes the form of rapid heartbeat, sudden nausea, facial flushing, sinus pressure, and lightheadedness, even though, in reality, I am not always being exposed or in any real physical danger. For a long time, I struggled to address or to get a handle on this, and just pushed through, mostly doing everything I could to ignore the sudden and magnified symptoms. But, as all unheeded warnings eventually do, they forced my hand by becoming so pronounced that my sanity and recovery were being compromised.
(Note: Post Traumatic Stress Disorder or PTSD is a mental health problem that some people develop after experiencing or witnessing a life-threatening event, like combat, a natural disaster, a car accident, or sexual assault. While most often in reference to returning veterans, there remains a great deal of literature on PTSD related to traumatic experiences that can happen to anyone throughout the course of a person’s life. Symptoms can become debilitating and can last a lifetime, if not addressed. In my case, the physical illness, cognitive dysfunction, irritability, insomnia and fatigue I suffered from mold and mycotoxin exposure was ample trauma to trigger PTSD.)
The good news is that I have finally taken the necessary steps to address my mold PTSD specifically, and I am seeing a greater positive turnaround in my health and in my ability to interact with my environment in a way that is no longer driven by compulsion and fear. It is a welcome and happy change for both me and my family. I didn’t actually recognize how negatively my behaviors were impacting others until I addressed them. That is why I want to bring my story and this information to you. I think it can really help and can be a great accompaniment to the other steps you are taking to regain your health, especially if you are finding yourself at a standstill or dead end in your recovery progress.
My Story of “Mold PTSD”
When we started treatment for mold toxicity and were living like gypsies while we gutted and remediated our moldy home, it was easy to attribute any returning or escalating symptoms to the stress and duress of our immediate situation. If I felt stuck in the one step forwards, two steps back cycle, I would calm myself with the “this too shall pass” mantra. But, when a year had passed, and the dust had cleared, and the rest of my family was, for all intents and purposes, “on the other side” of the mold, but I was STILL experiencing sudden, magnified exposure-like symptoms quite often, my mold PTSD came into full effect.
I began to obsess that I was being re-exposed when any hint of a symptom came on. I threw out almost everything all over again and inspected and retested every inch of our home for mold. I was avoiding everything and everyone, and isolating my children as well by not allowing them to go to friends’ houses or to have a friend over. I was cleaning for mold with compulsion, instead of purpose, and suspected everything of harboring hidden mold spores. Then, all tests came out perfectly clean, and all inspections yielded no signs of mold or moisture intrusion anywhere. My husband, at this point, was at his wit’s end with me and my mold fixation—he would jokingly refer to me as the mold police, but the comment would anger and set me off, because I felt misunderstood.
When all of my bloodwork and lab tests also looked great, and my sinus cultures were clean, but my mold symptoms were still present–low energy levels, insomnia, and horrible gastrointestinal symptoms that were the worst they had ever been (I was repeatedly hospitalized with an ulcerated colon and foodborne illnesses) –I actually started to fear that I was going a little crazy. I knew my symptoms were real and were physical, but mold in my environment and body didn’t seem to be causing them anymore.
It was at this time that my doctor stepped in and gently suggested that I take a closer look at some nervous system retraining therapies to deal with symptoms that, it seemed to him, might be being exacerbated by my anxiety, negative thought processes, and intense fear of mold. From what he could discern, my physical ailments seemed connected to my mental state more than to my environment at this point. He suggested that my body, at the cellular level, was stuck. It was still perceiving danger all around it. Thus, in order to stop that response, I was going to have to interrupt that sympathetic or fear-driven feedback loop.
I started learning more about the nervous system and its influence on physical symptoms, and took a deep dive into reading about PTSD (post-traumatic stress disorder) symptoms and different presentations. In my research, I found both other mold sufferers with the same experiences as me as well as the scientific research and literature to back up the idea that physical symptoms (especially those initially driven by a toxic exposure or trauma) can be magnified when there has been damage to the nervous system.)
Mold Toxins and The Nervous System
Nervous system damage due to exposure to mold mycotoxins is very real. One study showing widespread nervous system damage and dysfunction in mold patients was published in The Archives of Environmental Health in 2003 (the late Dr. Rae was one of the study’s authors). The abstract states that of the 100 patients studied, the breakdown of “mold exposure” symptoms were as follows: respiratory signs (e.g., rhinorrhea, sinus tenderness, wheezing) were found in 64% of all patients, physical signs and symptoms of neurological dysfunction (e.g., inability to stand on the toes or to walk a straight line with eyes closed, as well as short-term memory loss) were identified in 70% of all patients, objective abnormal autonomic nervous system tests were positive in all 100 patients tested, brain scans, conducted using triple-head single photon emission computed tomography, were abnormal in 26 (86%) of 30 (subgroup of the 100) patients tested, and objective neuropsychological evaluations of 46 of the patients who exhibited symptoms of neurological impairment showed typical abnormalities in short-term memory, executive function/judgment, concentration, and hand/eye coordination.
In other words, while all of the findings illustrated the adverse human health effects of living in moldy indoor environments, the most significant and widespread measured health effect was the mold’s impact on the autonomic nervous system—the part of the nervous system that is both responsible for the “fight or flight” and the “rest and digest” reactions. Damage here indicates that homeostasis and recovery would then be difficult, if not impossible to achieve without nervous-system specific intervention. In addition, brain scans were abnormal and neurological impairment was concentrated in areas controlled by the amygdala, a key component of the limbic system. This connection between physical, expressed symptoms and impairments in the way in which the nervous system operates made sense to me. When it came to mold and anything my body or mind associated with it, whether consciously or subconsciously, I was reacting with symptoms, but more than that, with intense panic and anxiety.
From Exposure to Haywire
When mold enters the body by inhalation in a mold-contaminated indoor environment situation, it passes through the sinuses or is breathed into the lungs. In either case, mold can then take residence in the sinus or lung tissue and begin to colonize. (This is why nasal rinsing with an added antifungal is SO important for mold sufferers during treatment and afterwards to prevent colonization and/or re-exposure.) Once inside the sinuses which are adjacent to the brain, mycotoxins from certain molds can cross the blood-brain barrier where potent toxins can disrupt and influence the pituitary gland, which controls eight hormonal systems including endocrine function, thyroid, and adrenal gland function. Further, toxin exposure to the brain can cause cognitive dysfunction, motor skill function, and chronic and debilitating fatigue.
(Note: A retrospective study was conducted on 79 consecutive patients (30-77 years old) with chronic sinus problems, chronic fatigue, and history of significant indoor mold exposure. All of these patients had high levels of indoor mold on settle plates (more than 4 colonies). Testing for pituitary hormones revealed that 40 of these patients (51%) were deficient in growth hormone, 64 patients (81%) were deficient in thyroid hormone, and 59 (75%) were deficient in adrenocorticotrophic hormone (ACTH). These pituitary hormone level deficiencies are quite high, as growth hormone is deficient in about 1.6% of USA adults and thyroid hormone is severely deficient in about 1 to 2% of USA adults. Deficiencies of growth hormone, thyroid hormone, and ACTH can cause many health problems including chronic fatigue, reduced memory and concentration, depression, reduced immunity, and loss of muscle and bone mass.)
At this point, the mold sufferer must get out of the moldy environment, and detox, but the danger signals that the body sends to the immune system to react to the mold sometimes continue to fire and inflammation become chronic. It is not known exactly why the cycle of inflammation is turned all the way on in some patients, but not in others. There are some hypotheses about latent viruses that are turned on by the mold causing this, but nothing definitive has yet been published. Further, brain scans of patients with mold toxicity show that, for some, areas of the brain can shrink from the mycotoxin onslaught, while other areas of the brain become more inflamed and hyperreactive—in other words, never quieting or completely turning off. This further disrupts hormonal balance, circadian rhythms, and recovery, because the nervous system is still hyper-vigilant at all times. (HERE is an in-depth research paper, authored in part by Dr. Thrasher, detailing mold and mycotoxins and their effects on human neurology and the immune system.) Thus, this may be why even with maximum therapy for the mold, some patients fight an uphill battle for full recovery and feel the lasting impact of chronic fatigue, anxiety, and depression for long periods afterwards.
The Autonomic Nervous System Simplified
The autonomic nervous system is referred to as the automatic or sympathetic portion of the brain, sending sensory info to the rest of the body and controlling involuntary functions. The limbic system is then referred to as the parasympathetic nervous system and controls expression of mood and emotion. Here, our brain immediately processes and stores short-term memories, smells, regulates our appetite and our emotional responses to food, controls arousal, etc. Thus, damage to the limbic part of the brain can influence behavior and emotion prior to the normal brain processing that information.
These two systems are NOT separable, though. Damage to one unquestionably influences the other. Thus, we must also recognize that when one system is dominant or overactive, this will have a significant impact on the other’s function. For those of us who have had a physical, immune system, or psychological insult to our bodies, the homeostasis of our nervous system has been challenged, and one area (fight or flight) sometimes becomes dominant. When this happens, we react in a disproportionate way to an outside stimulus again and again, unless balance is restored.
During a traumatic experience, the autonomic nervous system takes control, shifting the body into reactive mode. Shutting down all non-essential body and mind processes, the brain stem orchestrates survival mode. During this time the sympathetic nervous system increases stress hormones and prepares the body to fight, flee or freeze.
In a normal situation, when the immediate threat is gone, the parasympathetic nervous system would shift the body back into restorative mode, aka relax and recover. This process reduces stress hormones and allows the brain to shift back to the normal top-down structure of control, where the thinking brain can properly function and the limbic system can appropriately process stimuli and regulate bodily functions and reactions accordingly.
However, for those with limbic system impairment from mold mycotoxins or from the trauma brought on by the mold illness, things can get a little stuck. These people, like me, can go on to develop symptoms of post-traumatic stress disorder (PTSD), and the shift from reactive to responsive mode never occurs. Instead, the sympathetic nervous system, holds the sufferer in a constant reactive state. If left unmitigated, this hyper-responsive state can lead to negative health outcomes. A 2010 study published in World Psychology states,
“. . . the increased allostatic load associated with PTSD is associated with a significant body of physical morbidity in the form of chronic musculoskeletal pain, hypertension, hyperlipidemia, obesity and cardiovascular disease. This increasing body of literature suggests that the effects of traumatic stress need to be considered as a major environmental challenge that places individual’s physical and psychological health equally at risk.”
So, what can be done?
“Re-Balancing” Your Nervous System
(Note: I want to be clear, in NO way should anything I am going to suggest replace the necessary and required interventions of removing yourself, either by relocation or remediation, from the toxic exposure, or of taking the proper stops to detoxify and heal your body. Those are the first steps to address your nervous system with a toxic exposure. You have to actually get your body out of danger BEFORE you attempt to address the psychological and physiological components. For many, removing the mold both physically and internally will be enough for healing. The magic is in pairing those interventions with nervous system-specific therapies when other avenues have not been enough, or your body still seems to be reacting disproportionately to the actual stimulus.)
While the concept of “changing the brain” can seem overwhelming, the most important thing to remember is that all of the negative alterations that have occurred can be reversed–the flow between reactive and restorative modes can be repaired. The key to healing lies in subtle actions you can take to help to reprogram the body and mind.
It is also important to remember that people are unique; healing will be individual. There is no one-size-fits-guarantee for what will work. However, evidence suggests that when someone commits to a process of exploring and testing treatment options they can reduce the physical effects and symptoms of nervous system hyperreactivity and even eliminate symptoms of mold PTSD completely. There is hope and achievable wellness for mold sufferers when treatment for “mold PTSD” is addressed.
Programs, techniques, and actions that have been shown to deliver positive results, specifically for mold and environmental illness sufferers:
(Note: Below is a list of available therapeutic modalities. I have no affiliation with any of these programs, books, or techniques. Those that I have used personally, are indicated as such below. This list is only meant to provide information and resources to you, so that you can then pursue the course of healing and action that fits your needs, lifestyle, and budget. This is NOT a complete or exhaustive list of interventions. It just includes treatments I am familiar with and believe to be helpful. Some of these options are inexpensive and can be done in your home. I suggest you try the one that you believe suits your liking to see if you make progress. Others must be provided by trained professionals. These options may have expenses associated with them so you should carefully learn about each one and discuss the options with your Doctor.)
At Home, Self-Therapy Program Options:
Annie Hopper’s Dynamic Neural Retraining System – This system was developed by Hopper after her personal experience with debilitating systems from mold illness, chemical sensitivity, and nervous-system hyperreactivity. She has developed a step-by-step guide to rewiring the limbic system that worked for her to get her life back. The program can either be done by working independently through a 14-hour DVD series, or by attending a 5-day intensive seminar. The program is very time-consuming to start and requires that you spend an hour or more each day doing the program exercises and working through specific protocols. This should be done consistently for a 6-month period to see optimal results. Private coaching via phone or skype is also available to supplement the program. Patients and doctors alike report unprecedented results and fuller healing and recovery for those who go through and complete the program. She also has a book, Wired for Healing, that is a good stepping stone before doing her program.
Gupta Program Brain Retraining – This program was developed by Ashok Gupta. He experienced chronic fatigue that completely derailed and sidelined him during his medical training. Learning about neuroplasticity and brain retraining techniques led him to completely revamp the approach he took to healing and to medicine. He used scientific research and his own personal experience to shape his program. The program includes 15 interactive video sessions, over 20 brain retraining audio exercises and meditations, 12 weekly webinars, an online community, access to trained coaches, and a one-year Money Back Guarantee, no questions asked. The program also has an independently-conducted Mayo Clinic study done in 2010 that backs up its efficacy, with 80% of the patients achieving positive, lasting results.
Neuroplasticity Techniques – Neuroplasticity is based on the idea that the brain is able to change and adapt in both positive and negative ways. It is also based on the idea that we have the power to influence those adaptations in ways that suit our lifestyles and purposes. Learning brain-retraining exercises specific to dismissing negative thought patterns and fear can help to create new connections between our neurons. By doing so, we can rewire our brains to adapt to new circumstances in a more positive way. There are specific exercises proven to encourage and stimulate a more relaxed way of thinking when it comes to our surroundings and environment. Employing these ideas and techniques has really helped me to get more control of my thought patterns and to consciously down-regulate my nervous system responses. Some of the best books on neuroplasticity that I have found actually address addiction and binge eating, rather than anxiety, per se. Therefore, I encourage you to “think outside of the box” with neuroplasticity and to be open to reading books and to implementing strategies that have more to do with gaining control over your thought patterns and dismissing compulsions, rather than only healing anxiety and PTSD.
Visualizations and Meditation – Learning slow breathing techniques and how to guide yourself through calming meditations can mean the difference between an anxiety attack and an appropriate response. There are a multitude of apps, books, programs, and classes that can be helpful guides for getting you on track with this. Both are practices that have increased benefits with repetition and consistency. For me, starting my day with a guided meditation and gratitude practice has been life affirming. Taking this time to thank my body and the people in my life for my recovery and health keeps me in the moment, but also moving forward. I have found great calm and increased joy in my life from meditating regularly. It doesn’t have to be extensive or focused either. You can just sit quietly and breathe consciously for 5-10 minutes each day to see huge positive benefits.
Correcting Imbalances and Supplement Therapy:
Intravenous Phosphatidylcholine (PC) – If you are working with a practitioner with access to this, I highly recommend you discuss trying it, especially for anxiety. PC is a major component of all cell membranes and of the protective covering of nerve cells. Getting PC via IV helps to strengthen and heal nerve tissues and membranes, thus healing the physical nerve damage done by the mold.
Correcting Zinc and Copper Imbalances – I had to mention this, because it was instrumental to my healing. There is a reciprocal relationship between copper and zinc in the body. Many mold patients who struggle with psychological symptoms have an excess of copper and a deficiency of zinc. Your doctor can get a lab to measure your plasma zinc and serum copper. If an imbalance is found, they can help you take the proper steps to correct it.
Addressing Hypoglycemia – Low blood sugar is common in chronically ill patients. The most common symptoms are brain fog, fatigue, anxiety, and heart palpitations. Sound familiar? If you are suffering from this and the diagnosis is missed, you can have lots of trouble recovering. If you have huge appetite and energy swings, and experience the above symptoms, you may consider asking your doctor to administer a glucose tolerance test. This is an issue that is easily solved with alterations in diet and can make a world of difference in the efficacy of the rest of your treatment.
MCT Oil and Coconut Oil – If cognitive impairment is still holding you back, a combination of medium-chain triglyceride oil and coconut oil can reduce brain inflammation. This is a long-studied and proven treatment approach, pioneered by Dr. Mary Newport to treat her husband’s Alzheimer’s. Her protocol has patients mix the two oils (16 oz. MCT with 12 Oz. coconut oil) and take ½ tsp. – 2 TBS, depending on tolerance 3 times a day. I still do this as part of my maintenance plan. It also addresses and helps to prevent hypoglycemia.
Other Professional Therapeutic Modalities:
Eye Movement Desensitization and Reprocessing (EMDR) – This is a psychotherapy that I found very beneficial. Its goal is to enable people to heal from the symptoms and emotional distress that are the result of disturbing life experiences. Repeated studies show that EMDR can yield benefits of psychotherapy that once took years to make a difference. Therapist-directed lateral eye movements are the most commonly used external stimulus but a variety of other stimuli including hand-tapping and audio stimulation are often used. The stimulus enhances information processing and new associations, so that a patient can eliminate emotional distress.
Frequency Specific Microcurrent Therapy (FSM) – This is a treatment modality I have found to be extremely helpful. The idea is that each type of tissue in the body produces electromagnetic energy at a specific frequency. When cells are injured or diseased, the vibrational frequency of the electrons is disrupted in that tissue. Inflammation, stress, shock, injury, toxicity, etc., all respond to different frequencies. FSM matches the specific frequency of the tissue involved with the presumed condition and delivers two channels of microcurrent therapy. FSM encourages natural healing, reduces pain and inflammation, and repairs tissue by potentially increasing the production of adenosine triphosphate (ATP) — the major source of energy for cells. The effects can last several days or longer and can be cumulative with multiple treatments. The earlier one can initiate treatment the more effective this may be. FSM can require a number of treatment sessions to have a lasting effect.
Cranial Electrical Stimulation (CES) – This therapy employs gentle electrical stimulation to the head (cranial electrical stimulation) to help normalize brain functioning. It employs mild battery-powered electrical stimulation through clip-on electrodes attached to the earlobes or pre-gelled electrodes placed behind the ears. Current flow is limited, so a user will only experience a slight tingling sensation, if anything. CES gently adds energy back to all parts of the brain, helping return patients to an optimum state of homeostasis, like that before stressors were activated. CES’s most immediate impact is reduction of anxiety and leaves you feeling both relaxed and alert. Results can be cumulative and lasting.
Acupuncture – I started with acupuncture in my journey to heal mold PTSD. It can be very helpful, but finding the right, skilled practitioner is key to its efficacy. Typically acupuncture for PTSD is administered by stimulating specific auricular (relating to the ear) points in the body. These points of the body are responsible for controlling particular brain areas that help control nervous functioning as well as mitigate stress levels. It is most effective when used in conjunction with other forms of therapy.
It is my hope that you find some answers and peace in this post, knowing that if you are suffering from mold PTSD, there are others out there with the shared experience. This illness can be very debilitating and frustrating, but there is hope and healing. If you have questions or comments, feel free to write to me or to enter them below.