Safety Dance

Whenever someone in a book, movie, or show says something like, “I feel safe with you,” I cringe a little. It sounds so fake. Does that mean that person feels unsafe in most other situations? In my mind, feeling unsafe only happens when you feel that you’re in immediate danger–like narrowly avoiding a car accident or being in an abusive relationship. 

However, I have recently realized I am very wrong. My own blog proves it. I  have written that the world is not a safe place, and that my body is not a safe place either. We will circle back to these statements.

After the functional medicine doctor suspected mold was causing my symptoms, and then we confirmed that mold was present in our home, I felt relieved. There’s a reason I feel like I’m in a sharp decline and I can take steps to recover. I spent so much time in bed. I was sick, so I was allowed to rest. While part of me felt validated,  another part of me doubted and questioned and researched. I don’t know if mold is indeed the original cause of my symptoms. There’s so much pseudoscience, but also new research happening.

I decided to spend two months away from my house. Luckily for me, my parents live in Oregon and have a guest room. I’m on day 57 and don’t feel any difference overall. People who’ve recovered say it can take six months or more to feel better. So, while it would have been nice to experience a dramatic improvement, I was prepared not to.

I also decided to start a brain retraining program. The first time I heard the term, I thought it sounded, well, a bit silly. I understand that neuroplasticity is real and it’s amazing, but what does “retraining” your brain have to do with recovering from mold exposure? I’m physically inhaling mold spores into my respiratory system and having reactions. Brain retraining seemed like trying to convince your brain that you don’t have a virus, or that you haven’t injured yourself. Because I was ignorant about it, it took me a long time to look into brain retraining. After I did, it took me a long time to decide to spend the money on it and commit to it. I chose The Gupta Program, which is a six-month commitment. The program is designed to address many chronic conditions that involve inflammatory responses.        

With the world finally normalizing mental health, there’s lots of references around the internet to our fight/flight/freeze response and how to calm it. Typically, there’s reference to early humans running from a predator, how that served a purpose and kept those people alive. It’s the activation of our sympathetic nervous system, our stress response. We feel stressed, scared, tense. When our parasympathetic nervous system activates, our heart and breathing rates slow; we relax and recover. In the modern world, most of our threats are not physical but mental or emotional. But our bodies respond as if the threats are physical, and we have a stress response. (I am paraphrasing Session 3, Module 1 of the Gupta Program. The first three sessions are available on YouTube.)

Brain retraining can help all sorts of chronic conditions that stem from the brain creating a sympathetic response loop. In addition to genes/upbringing and stress, there’s often a physical trigger (illness, mold exposure, chemical sensitivity, injury, etc.) and the sympathetic nervous system switches on to ensure our survival. Then sometimes, it doesn’t switch off. This uses up energy and causes exhaustion. And we end up with a hypersensitive, reactive brain. The brain reacts by over triggering the nervous system and the immune system. This leads to symptoms. External stresses also feed into the immune system and nervous system responses.

Image from The Gupta Program

So why doesn’t the brain switch off the sympathetic response after we’ve recovered or healed (or left the moldy environment)? The brain has become hypersensitive to the symptoms (the very ones triggered by overstimulation of the nervous system). The symptoms tell the brain we’re still in danger, which triggers new defensive responses. The loop, the vicious cycle, is complete. The brain has learned to overdefend. The pain signals mean there’s danger; the brain’s perception of ongoing danger leads to an inflammatory response. 

The core of the brain retraining involves three things: calming the nervous system, stopping the brain from dwelling on symptoms and illness–catching yourself in the moment and redirecting–and reengaging with joy, so that you’re not “waiting until you’re better” to do things that bring you happiness.

When you realize you’re thinking about/noticing a symptom, you’re supposed to stop and tell the worried/anxious part of you, “Thank you for warning me, but you can relax and let go because….” and finish the statement for yourself. For mold it can be something like, “I may have been exposed to dangerous levels of mold in the past, but I’m safe now.” Hmmm. That sounds great if that’s true for you. If you worked in a moldy building and now you don’t work there anymore, say. But if the mold is in your house, and you still live there, then that’s trickier. I thought of “Mold is supposed to be everywhere in the environment, and it’s okay.” Or not mentioning mold at all. I know that lots of people are in my situation. The mold in their home is at “dangerous levels” for them and not for others in their household. So I’m just trying to remind my brain that I’ve lived in my house for nine years and felt fine for five of those years. Calm my brain down to the five-years-ago levels.

My job is to convince my brain that I am safe and that it’s allowed to calm down.

Part of retraining is meditating twice a day, at least. Meditation is all about letting thoughts come and go without judgment and without getting caught up in them. Being an observer of your thoughts. You are not your thoughts. They are just thoughts. Ashok Gupta, in the videos that go with the program, speaks of our dear, beloved mind. I like that idea, being so gentle and loving to our minds, rather than frustrated or anything negative. 

The Gupta Program tells us to observe our thoughts with “awareness, amazement, and amusement.” Yes, it’s pretty amazing what my mind can do. In the car recently, right at the very moment I was breathing deeply and reminding myself I am safe, I imagined getting in a car accident. 

My dear, beloved mind has lots of anxious thoughts. At the beginning of the program I tried out the idea that “My mind is anxious, but I am safe.” I’m okay; these anxious thoughts are just thoughts.

“But we don’t really know that we’re safe,” my brain tells me. And that’s true. That’s the problem. 

Anyone who’s grown up in California knows that the threat of fire is very, very real. When I was young, my parents got each of us kids a bin and told us we could put whatever we wanted in it that we’d want to take if we needed to evacuate. Everyone in California probably knows someone who’s lost their house to “wild”fire. And it’s only going to get worse. That’s a fact. Fire “season” is most of the year, and smoke in the air is a constant summer/fall companion.

Since 9/11, I sometimes involuntarily tense or hold my breath when I hear planes. We live very near a small airport and there are single-engine planes going over our house all the time. And I know that takeoff and landing are the likely times for something to go wrong. 

I could be shot in a movie theater or a grocery store or a church or a school or at a parade or anywhere anytime. This is America. 

I am a woman. Since always, society has told me that it is not safe to be female. It is not safe to walk alone at night. I remember reading a list that told me I shouldn’t wear a ponytail because it’s easy to grab. That I should walk quickly and confidently to not appear vulnerable. But I can’t do that, I thought. I cannot run away or knee someone in the groin. I am vulnerable. It makes me so angry now. No one should ever be made to think their hairstyle has anything to do with someone else choosing to assault them.

Those are four examples of anxious thoughts inside my dear, beloved mind. I have never had to evacuate because of fire. I have never been near a plane crash or shot at or assaulted. But part of my brain always wants me to prepare for the possibility. 

So I sit with my mind and I think, “How can I calm you in a way that you will believe?” If I can’t think “I am safe” without my brain saying, “But…” I have to find another way. 

I came up with “I am safe right here, right now.” Because even if I get shot the moment after I have that thought, I didn’t know I was about to get shot. See? Totally works. It also forces me to stay in the moment rather than worrying about the past or the future.

I used that for a while, and now I am telling myself “I am safe,” hanging out in my parents’ house and there isn’t always an automatic doubt. It’s all about perception anyway. The brain’s perception of safety. Two people can be in the exact same situation and one person will perceive it as stressful or dangerous and the other won’t. 

The Gupta Program isn’t helping me resolve my symptoms; it is helping me change my brain’s perception of the symptoms. I am no longer thinking things like “I am sick” or “I have mold illness.” Instead, I have but a loop in my brain. I am retraining my brain to let go of the loop. If this sounds too loopy to you, just go with neuroplasticity and calming the nervous system. 

Now I’ve worked my way back around to where we began. I have written about how my world and my body are not safe. I may be able to convince my brain that I am safe in my house with the mold. But how do I handle the very real, very physical instability I live with? How do I shift my perception to one of safety when obstacles are everywhere and I keep myself from falling several times a day, every day of my life?

I don’t know the answer to this question, but I’m trying to formulate one. A big part of the Gupta Program is “acceptance and surrender” regarding your symptoms. Stop resisting them and tensing up against them. “Relax. Your symptoms are here, and it’s okay that they’re here right now.” That’s a really challenging idea when your symptoms are constant and have been for years and you just want them to go away already. I’m referring to the throat pain here, not the CP pains. Because I know the CP pains. I do feel like I’ve got a handle on acceptance and surrender to those. Most of the time. I mean, it’s an interesting place to be, trying to take care of yourself and treat what can be treated and accept what cannot, because you have to figure out which is which. 

Part of the guided meditation on acceptance and surrender is, “Whatever happens, I will handle it.” On one hand, this immediately sets off the part of me that worries about the future. But on the other, I think, well, I’ve handled everything so far, so I suppose that’s true. Not that I’ve handled everything well, of course. Survived. The point is that worrying, or ruminating, doesn’t help. But knowing that usually doesn’t stop someone from worrying or ruminating. The flowchart below is beautifully simple, but it also frustrates me because reality isn’t that simple.

In my daily life, I am careful and cautious. Outside my home, I am careful and cautious and hyper aware/vigilant. Scanning for obstacles, calculating safest paths. What is it that I’m afraid of? Falling. Injury. Embarrassment. Causing a disruption. There’s lots to unpack there. But for now let’s focus on falling. I do it pretty regularly, and usually it’s not a big problem. I am to the point where if I fall outside alone, I wouldn’t be able to get up. Sure, someone would come along eventually. So that’s “handled.” (Okay, I do worry about someone holding out a hand to help me up and me pulling them down.) I worry about badly injuring my hands in a fall, especially now that I use trekking poles. That would be really rough. But it hasn’t happened yet. And if it did, somehow, we would handle it. 

It is my reality that my physical instability, muscle weakness, and fatigue increase falls and risk of injury. My perception is that therefore, I am not safe. These two sentences started out as one. I had just written, essentially, that it is both my perception and my reality that I am less safe than an average able-bodied person. Then I separated the two, and I’m staring at them, wondering what to make of them. Are they true? I’m not safe from falling. Falling is scary and it is embarrassing and it does hurt–and it takes an emotional toll. But can I be someone who falls and who also feels safe?

This is the safety dance. Because if I change my perception and do feel safe, so safe and confident that I stop being cautious and careful, I will fall more. That’s not fear or worry talking; that’s reality. And though I know that if I fall, I will handle it, that doesn’t mean that I will start throwing caution to the wind and go around falling all over the place. I still want to take care of myself. 

I have a disability. I am someone who falls, who holds on to things to stay upright, who needs help often. Who lives with chronic pain. I want to type “I am safe” right now, but it’s still true that I don’t feel safe a good deal of the time that I am on my feet. I don’t know how to calm my hypersensitive brain and convince it that I am safe, even with the risk of falling and injury. 

There’s a lot of smiling in The Gupta Program. We breathe in and out with a smile a lot. The brain doesn’t know the difference between a real smile and a fake one, so it releases the same feel-good chemicals either way. Affirmations have been proven to help, too, and it certainly takes time to start believing them.

So I will keep going with this program, and I will smile and I will tell myself, “I am safe. Whatever happens, I will handle it.” And then I will take my poles and I will step out the door.

Right now, that’s the best I’ve got. 

Inspections and Injections

Last I checked in, I had gotten mycotoxin results that indicated high levels of some toxins in my body, and I had consulted an orthopedic surgeon about my right hip and labral tear.

On September 10th, someone from a certified company came to our house to do an inspection and collect dust samples to test for various molds. The dust sample is something you can do yourself and send to a lab, but I’m glad I had a professional do it and use a reputable lab. Not all labs test for the same molds, and molds can differ by region. This company uses a lab that tests for a mold common to this region that other labs skip.

Our house has no visible signs of active mold or moisture issues, but there could be mold in unseen places, like inside the walls if windows or plumbing were leaking over time. (Mold spores are microscopic enough that the width of a human hair is like a highway, so it’s easy to understand that mold spores are everywhere. Mold is only a problem when it’s the toxic kind at toxic levels.) 

I received the ERMI (environmental relative moldiness index) results on September 21st. Here’s how the inspector explained them to me: “On the worksheet the first data column lists the mold levels in your sample, the second column is the Geometric Mean (average) for each mold as determined by the EPA, and the third column shows how many times the Geometric Mean (average) your levels are for each individual mold. The molds of concern are highlighted either red or orange.  As you can see, you have many of the more toxigenic molds at elevated levels; of particular concern is the Stachybotrys [“black mold”]. It is present at the highest level and is an indication of chronic, long-term water damage. Also, you have a high level of Fusarium which produces one of the mycotoxins that you have” [based on my lab results].

These results were certainly surprising and overwhelming. Once you start reading other people’s mold stories, you learn about people who camp in tents in their backyards or leave all their worldly possessions and start over in the desert. Step one to feeling better is to remove yourself from the moldy environment. That’s simply not feasible for most people. 

So. There’s toxic mold in our house and we don’t know where. The next step is to hire a certified remediation company to find and remove the mold. Remove, not kill. The EPA states, “The purpose of mold remediation is to remove the mold to prevent human exposure and damage to building materials and furnishings. It is necessary to clean up mold contamination, not just to kill the mold. Dead mold is still allergenic, and some dead molds are potentially toxic.”

On October 10th, we had a mold remediation expert come to our house. He, too, inspected inside and out and took some pictures and will send us an estimate. Searching for mold involves looking behind (removing) baseboards and other, potentially more destructive sampling. We are also waiting on results from a culture of our original dust sample to see if the mold is still active and growing.

Fortunately, the inspection company also provided us with an “effective cleaning guide” and we won’t have to move to the desert. Ninety percent of belongings are cleanable. It’s large, cushiony items like couches and mattresses that should probably be replaced. Step one was to “ban the broom,” which only spreads spores, and invest in a HEPA filter vacuum. Check. 

After we figure out the source of the mold and fix it, step two is to clean. Everything. To remove the mold spores that are covering every surface in our home. I don’t want to think about that right now, so at the moment, we’re still just living in it, as we have been for who-knows-how-long.

At my August appointment with the orthopedic surgeon, he gave me the option of a steroid injection in my hip and offered to refer me to another surgeon who has experience in both arthroscopic and open techniques for labral repair and impingement repair. He told me to think about it and get back to him, but really there was nothing to think about. Yes, try the injection, and yes make the referral.

Still, I waited until a few days later to send a message through the hospital system. I didn’t hear back for a while, and what I got was another appointment with the orthopedic surgeon for the end of September. I’d hoped we’d be able to do injection locally. It seemed odd that the surgeon himself had to do it. 

But drive the forty minutes we did. When we arrived, it was essentially “You haven’t had the injection yet? Why are you here?” He himself then put in the order for the injection (locally, as I thought), and the referral, as we watched. With dismay, I realized that the whole thing was a big mix up and that our appointment was over. “Unless you want me to see if I can do it with ultrasound right now?”

Yes, please. So he trundled in the ultrasound cart and someone to assist. It all seemed rushed. He must drink a lot of coffee. I did not have to get undressed from the waist down and put on a gown and climb on a table as I did for the arthrogram. Instead, I sat in the exam chair, hiked up my skirt on the right, and the field was isolated from its surroundings by draping a clean gown over the other leg. Yes, he could visualize everything he needed to without my having to go to radiology. Even I could see the head of my femur on the screen. Clean the site, spray cold numbing spray. In goes an injection of lidocaine. My whole leg (and body) tenses with the sting of the needle. It hurts inside my leg. In goes the steroid. And it’s over. (Well, there’s some grunting and grimacing and deep breaths and making sure not to look. And then it’s over.)

He asks how I feel. Um, the same except now my leg hurts because you just stuck a giant needle into it? He picks up my leg and moves it all around. Any difference now? No.

He says it’ll take up to forty-eight hours to feel the full effect, and that sometimes it can take a week. I’m flabbergasted that I’m supposed to feel immediate improvement. But that’s lidocaine’s job. It is an anesthetic. Then the steroid is supposed to reduce inflammation. So even though neither the labral tear nor the impingement change in any way with this procedure, the pain is supposed to be lessened. Instead, on the drive home I moan about how sore it is now, deep inside my leg.

I’ve started to wonder if my brain and body just don’t respond to medication in a predictable way. But then I remind myself that lidocaine has worked on other parts of my body. I had all four wisdom teeth removed at once with a local anesthetic. I had the birth control implant placed and removed from my upper arm with local anesthetic. And they really had to dig for that thing when it was time for it to come out. So. Maybe it’s just the CP parts of my brain and body that ignore lidocaine. Is that a thing? It seems like it could be a thing.

It’s been about two weeks since the injection and once the initial pain subsided, it felt like nothing at all had been done, and it still feels that way. Worth a shot, I guess. I did read a paper that reported those who responded well to an anesthetic injection also responded well to the surgery. I wonder what that means for me? I wonder if this other surgeon I’ve been referred to will have some positive stories to tell me about the dozens of labral tears and impingements he’s repaired in CP patients. I’m not holding my breath on that one.

Right now, I’m waiting. Waiting for the mold culture results and the remediation estimate. Waiting for an appointment with the new doctor. I have no idea how long all this will take. If surgery is a go, how soon will it be? 

I do know that I want my home to be a safe place in which to recover. I’d love to feel like I’m recovering from the mold toxicity (CIRS) before facing surgery. I’d love for my throat not to hurt anymore and for my thumbs to work properly without pain. 

If anyone wants a good laugh, watch episodes three and four of The Big Leap on FOX. There’s a dancer whose career ended because of a knee injury and a doctor comes to her office and injects something into her knee and she gets up then and there and dances without pain. Ahahahaha. In the next episode, the dancer does the injection herself. Without, you know, cleaning the area or anything. You gotta love TV. But really. It would have been nice if it had worked for me.        

Good news! I’m toxic. (Maybe.)

Let’s return to my adventures in functional medicine, to which I turned after years of chronic sore throat that became dramatically worse in September 2020, and ENT appointments and an upper endoscopy did not help.

First, I want to reiterate that I am frustrated by and skeptical of medicine in general for various reasons. It drives me over the edge that Western medicine takes patients in fifteen-minute increments and that nothing is done to find the cause of the illness, only to treat the symptoms. It’s just completely and utterly the wrong approach to healing someone and giving them a better quality of life.

Second, while functional medicine does try to find the root cause, those offices often don’t take insurance, making that kind of care prohibitive for most people. 

Third, so much of chronic illness is unknown/disbelieved/underfunded/unresearched. It can’t be addressed in fifteen-minute increments. But just because there isn’t research to back something up, it doesn’t mean it isn’t real. It just means the research hasn’t been done. 

The first time I went to a functional medicine doctor was in the summer of 2018. I was shocked by a positive result on my celiac disease blood panel. I removed gluten from my diet and looked forward to how I might feel. Many people experience a nearly miraculous improvement. Perhaps the fatigue and muscle and joint pain wasn’t all CP-related? But no, I didn’t feel any great difference. (The gastroenterologist took me more seriously in 2021 when he looked back at my original TTG Ab,IgA result of >250, the highest he had seen, he said.)

This time, with my new, local functional medicine practice, after all my intake forms and one appointment each with the nutritionist and the doctor, the doctor was pretty sure I have CIRS.

CIRS stands for Chronic Inflammatory Response Syndrome, but many doctors aren’t trained in diagnosing it (and therefore don’t think it’s a thing). CIRS is also called Mold Biotoxin Illness. Around 25% of the US population have the genes that put them at risk of developing CIRS if brought into contact with mold. From Moldy to Healthy (.com), CIRS “happens when two things occur — there is an exposure to a biotoxin, like mold, or a Lyme tick (those are the most common), or eating reef fish contaminated with Ciguatera toxin, as well as a couple more. Combined with a genetic susceptibility to being unable to clear the toxin, the body’s inflammatory response can’t shut off. This chronic inflammation impacts multiple other systems in the body, causing dysregulation everywhere.” 

From National Integrated Health Associates:

“Chronic Inflammatory Response Syndrome (CIRS) is a collection of symptoms which is also sometimes referred to as Biotoxin Illness, or Mold Illness, and was initially thought to be caused by mold exposure only. However, further research indicates bacteria, fungus, and various viral infections are also implicated in the development of Chronic Inflammatory Response Syndrome.

It is quite a dilemma for both patients and physicians in dealing with such a complex illness as CIRS, which overlaps and can mimic symptoms associated with other conditions such as Lyme Disease, Ehrlichiosis and some autoimmune disorders. CIRS may often be misdiagnosed, or underdiagnosed.”

So, do I truly have tons of toxins built up in my body, causing chronic inflammation and all sorts of seemingly unrelated symptoms?

The problem is that I live in a very dry environment, where mold seems unlikely. However, mold isn’t always visible or odorous. If I’m genetically predisposed, maybe my house doesn’t have a big problem, just a big problem for me. My symptoms have gotten worse since the pandemic. Perhaps my anxiety and inability to focus and my exhaustion aren’t all because of the pandemic itself, but because I have been sheltering in my house. The pain and weakness in my fingers, hands, wrists, that I went to months of PT for–maybe it’s not from using trekking poles. It started after I began sheltering in place and wasn’t using my trekking poles at all.

Further, the mold isn’t necessarily coming from my environment. I suppose I was naive to think that food we buy in the grocery store is free of mold unless visibly moldy. It turns out that many foods, especially long-traveling foods like grains can have molds that then produce high levels of mycotoxins. See this peer-reviewed chapter, “Mycotoxins: The Hidden Danger in Foods.”

I want so much to have clear answers, to have clear next steps. I have results from a mycotoxin urine test that seem to confirm that I do indeed have high levels of toxins. Normal levels of citrinin are less than 25 (units unclear). My result was 790. Yikes, right?  That certainly sounds bad. 

According to the information included with my results from The Great Plains Laboratory, Inc., “Citrinin (Dihydrocitrinone DHC) is a mycotoxin that is produced by the mold genera Aspergillus, Penicillium, and Monascus. CTN exposure can lead to nephropathy, because of its ability to increase permeability of mitochondrial membranes in the kidneys. The three most common exposure routes are through ingestion, inhalation, and skin contact. CTN has been shown to be carcinogenic in rat studies. Multiple studies have linked CTN exposure to a suppression of the immune response.”

So citrinin is carcinogenic and can suppress the immune response. What else? Authors of an article in the journal Foods state, “Citrinin (CIT) deserves attention due to its known toxic effects in mammalian species and its widespread occurrence in food commodities, often along with ochratoxin A, another nephrotoxic mycotoxin. Human exposure, a key element in assessing risk related to food contaminants, depends upon mycotoxin contamination levels in food and on food consumption.”

Which foods have high levels of citrinin? According to an article from the Journal of Plant Pathology & Microbiology, “Citrinin has mainly been found in rice, wheat, flour, barley, maize, rye, oats, peanuts and fruit.” Guess what vegans eat a lot of? It doesn’t seem coincidental that three of the top foods I keep coming across in my search for citrinin information are wheat, barley, and rye. Those are also the three foods that contain gluten. Is there a connection between mycotoxins and gluten intolerance? I did find a doctor who believes so. But of course, I can find anything on the internet. Celiac disease can develop at any time in the lifespan, and although I only miss bread occasionally, it would have been really great if my celiac gene had never expressed itself. Even though I’ve adapted well to a gluten-free diet over the last three years, I eat large amounts of the other foods on the citrinin list: rice, oats, fruit. Often all of them every day!

I want to know what to do next. How to get my house (and car) tested for mold. How to get it remediated and then tested again by reputable companies. Whether or not to believe my mycotoxin test results. (In the course of doing research, I found a doctor who said not to believe urine tests.) How to change my diet if the toxic load is through ingestion. How to detox my body.

The good news is that CIRS is treatable. The bad news is that it’s not a simple process, but a potentially years-long one. I can’t find any definitive information. All that I’ve cited here is a result of my own research and not from my doctor. Most of what I’ve found is from functional/integrative medicine, and some of it is conflicting.

Again, same as with the celiac diagnosis, I feel a glimmer of hope that some of what I’m experiencing is in fact NOT related to cerebral palsy. Hope that there are steps I can take to help myself feel different, better. More energy, less pain. A slowing of this alarming decline. Is it possible?

Informal Works Cited:

Cinar, Aycan and Elif Onbaşı. 2019. “Mycotoxins: The Hidden Danger in Foods.” DOI: 10.5772/intechopen.89001

“Citrinin in Foods and Supplements: A Review of Occurrence and Analytical Methodologies.” Foods. 2021 Jan; 10(1): 14. Published online 2020 Dec 23. doi: 10.3390/foods10010014

Doughari, J. 2015. Plant Pathol Microbiol, 6:11. DOI: 10.4172/2157-7471.1000321

Dr. Jellison, Functional and Integrative Medicine

Dr. Kim Crawford, Internal Medicine/Functional Medicine

Merritt Wellness Center, Moldy to Healthy

http://moldytohealthy.com/2020/07/19/what-did-50-doctors-miss-and-what-is-cirs/