My life has taken a new trajectory, mainly as a result of a diagnosis that came after years of health struggles. Obesity. Anxiety. Depression. Hormone imbalances. Inability to sleep. Allergies. Just to name a few. I was cognizant of what caused my obesity and fully invested myself in improving my lifestyle to remediate the consequences of my poor choices. However, there came a point where diet, exercise, and stress management impeded progress and I continued my journey looking for answers as to the root causes for my struggles. At 30 I was told I was menopausal; at 33 I was diagnosed with Hashimoto’s disease (autoimmune hypothyroid). It took years to balance my thyroid levels, and even when they were level, my struggles not only endured but also worsened. By 36 I lost interest in just about everything, and it was at this time I decided to see an integrative physician who did an onslaught of blood work and medical testing. One by one the test results were coming in and I went to work doing what I do best; research. I narrowed it down to I was struggling with Lyme disease or something called CIRS. When I walked into his office during our follow-up visit, excited to share my research results, not only did I impress him but also I was right. I had CIRS.
What is CIRS? It stands for chronic inflammatory response syndrome and it is an illness characterized by persistent inflammation that results in a plethora of symptoms — including those I was experiencing. Typically CIRS is triggered by biotoxin exposures (like mold), infections (including Lyme disease), or other organisms, and the chronic inflammation leads to weight gain, hormone imbalances, memory loss, digestive issues, mood swings, depression and anxiety, and, unfortunately, some degree of brain damage (survivingmold.com, 2018). In fact, many diagnoses for conditions such as fibromyalgia, chronic fatigue syndrome, MS, depression, stress, allergies, PTSD, IBS, and ADD are often the result of CIRS and improve with proper therapies (survivingmold.com). Not only am I genetically predisposed – I carry the genetic HLA susceptible in 24% of the American population – but the damage from the chronic inflammation was taking significant physiological, biological, and emotional tolls.
Living with CIRS is not easy; it is a life long disease I will have to continue to navigate. It requires understanding there are buildings that will compromise my health, including those with mold and MARCoNS (multiple antibiotic resistant coagulase negative staphylococci) — a biofilm/staph infection deep in the nasal cavity of those suffering with CIRS who have a low MSH — because my immune system cannot respond appropriately, offering the protection seen in healthy non-susceptible individuals. Essentially, my innate immune system fails to process substances as good or bad, friend or foe, and develop antibodies so that the next time I am exposed, it can hand it off to the acquired immune system to clear. In a person with CIRS, the hand off never happens. Rather than ridding my body of the antigens, they are recycled in my body causing my immune system to be in constant fight mode and thus leading to chronic inflammation. Homes, offices, schools, malls, movie theaters, gyms, hotels, the metro and planes are all a cause for concern as are building with water damage or flat roofs. Humidity is not my friend, nor high mold seasons.
It requires understanding that diet plays a pivotal role in maintaining optimal health. I now fully understand what Hippocrates meant by saying “Let food by thy medicine and medicine be thy food.” I could literally write a whole blog on this topic — perhaps that will come to fruition — but alleviating inflammation and improving biomarkers of inflammation requires removing triggers in the diet. This includes food allergens (I do a Dunwoody test every 6months), sugar, gluten, dairy, corn, soy, molds (including mushrooms and cheeses), root vegetables, and amylose (bananas, beets, radishes). When your gut is healthy, when you heal leaky gut — a leading cause in autoimmune disease — your immune system is healthy, as is your central nervous system (your brain).
It also requires acceptance, self-love and compassion. I love the gym but no matter how strong I become I may never look like Kira Stokes, and I may struggle with fatigue and shortness of breath even though I am in shape. So no, I have not gained weight; I am inflamed. I have to remember that family, friends and co-workers may not understand what I am going through, and be personally offended if I cannot be in specific environments which compromise my health. No, I do not want to personally offend anyone by leaving their home (because the effects of being in a moldy building is immediate) but when I am exposed it leads to a cascade of consequences that take considerable time to recover from. And no, I do not want to be the person to tell you that you have mold in your home; who would? I also have to accept and be empathetic with the fact that when I am mold sick, there are certain things that are beyond my control…like my hormones. Do I enjoy being depressed and crying all of the time, or being negative Nancy? Hell no. Can I control the sudden onset of anxiety that completely takes control of me that I feel like I am Patrick Swayze in Ghost when he is standing outside of his own body watching himself? No. But I can recognize the sensations that precede the onset of anxiety and practice techniques to calm myself, or remove myself from the environment until I can put myself together. I have to accept that cheating is never really worth it, meaning diving into a hot fudge sundae is full of consequences far greater than the enjoyment of the cheat. And I have to accept that not all medical practitioners in western medicine fully buy-in or comprehend the effects of CIRS; try explaining to your gynecologist that your hormones are a result of mold exposure and the consequences of birth control pills (do not even get me started here), or telling your endocrinologist that your Hashimoto’s is the consequence of toxic mold.
The struggle is real, but the more I know about CIRS the more empowered I am to minimize its effects on my health and well-being. The treatment protocol I follow, in collaboration with my integrative practitioner, has allowed me to take control of my health and life. Being proactive in the healing process is the difference between thriving and suffering.
If you are experiencing similar symptoms, or want more information on CIRS including diagnosis, testing, and treatment, visit www.survivingmold.com. You can also find qualified practitioners in your area on this site. If you live in Northern Virginia, be sure to check out the Virginia Center for Health and Wellness with Dr. Andrew Heyman or visit www.vc4hw.com.