Poisoned: My life as a Canary in a Coal Mine - Part 1.
How Mold, Metals, Formaldehyde and Lyme Disease Made Me Ridiculously Sick and What I'm Doing About It.
June, 2016. At home suffocating on the floor.
Suddenly and without warning (or without any warning I would heed) I am sick. Terribly sick. I am struggling to breathe. I cannot climb stairs or walk to the mailbox. I cannot read, think, or write. I cannot even have a conversation. My lungs are full of mucous; my mind is full of fog. I have lost 10 pounds in 10 days. I lie in a fetal position in my daughter's bedroom—somehow it feels safer in here—taking puff after puff from two clammy inhalers—steroid, albuterol, steroid, albuterol.
I have not had an asthma attack in 23 years. I breath slowly, deliberately, the way I remember it on that claustrophobic night in Switzerland when the elephant fist materialized and slammed into my chest for the first time: c’mon dude, keep that airway open, don’t, DON’T panic, don't let this air hunger consume you. I do not want to go the emergency room. I don’t. I don’t. I don’t.
My thoughts begin to circle the drain: I have fallen down a well. I am not getting out this time. I have fallen off some sort of cliff. I am in free fall. Blessed free fall. Flapping like an old coat down this lovely well. There I go. Past caring what’s wrong with me, past caring how it happened, let it be over now. All shall be well. Life is an ember, a cinder, an ember again.
I am dead. So dead I cannot even die.
3 Years Earlier: My Ordinary World.
There I was, tailgating again, riding the bumper of the car in front of me, just far enough away to read the license plate, just bored enough to memorize it. I fumed. I made comments to the empty air about how roundabouts were too cute to be functional. I picked up my phone and jabbed at it with my thumb. I took another swig of coffee to get through afternoon clinic. This was my life.
This was also my life: I believed in what I was doing. I took care of things. I cooked. I cleaned. I read to my kids. I enjoyed being with my wife. I practiced disciplined self care: I had a yoga routine, a meditation routine (boy, didn’t I need that), a supplement routine, a sleep routine, a water routine. I ate real food. In short, I was one of those people who believed that health was all about effort and that everyone was more or less as happy and healthy as they chose to be.
I know, I know. Pretty shallow. But what are you going to do? I grew up in the 80’s, the "more is more" generation. Always addition, never subtraction. My intentions were good: to flourish, to accomplish something, to love and care for the things I had received, and to receive more. I felt I was doing all right.
But there were cracks in the pavement.
There was that mysterious one time when my health went sideways: that time when a musty fug in our shower filled my nostrils and made me cough and wretch into the sink. I slavered and strained like a dog on a choke chain. Strange. Disconcerting. But it was an easy fix, wasn’t it? I just stopped using that shower. No need to waste time reflecting. No need to slow down and ask questions like: So, how about that smell? Why do you think it wrecked you like that? No. Just use a different shower. Just cope. Move on. Cope. Move on. There’s a rhythm to it. Anyone can do it.
And then there was that other one time, back in 2006, when I got my hair follicles tested for heavy metals, just as a lark, just for curiosity’s sake, and the test came back off-the-charts for chronic lead poisoning. Wellllllll, who believes those tests anyway, right? I’m a real doctor; I don’t believe in hair follicles.
Okay, and maybe there was that other other one time when I got bit by a tick in Switzerland and was too shy to tell anyone because the rascal bit me in the !@#$%! Just get that juicy bugger off me and let me get on with my life. Right? Don't look back. Don't check anything. It never happened.
My world was an exquisite mix of effort and denial.
The Wake Up Call.
Over time, the cracks in the pavement grew.
In late 2014, I developed a painful rash that wouldn’t go away. I tried anti-fungals and antibiotics. I tried pyrethrin, essential oils, coconut oil, the candida diet, ketosis. Nothing. Steroid ointment was the only thing that gave me temporary relief, but I couldn’t live on steroids.
The rash itched terribly and because of its location, it looked like I was trying to scratch my butt all day long. It was embarrassing. It was good practice for developing tremendous self-control in a crowd.
Then other bizarre things began to happen.
A second rash broke out, not itchy this time, but ugly and all over my body. It looked like ringworm but failed to respond to treatment. Here is a picture:
Then I began experiencing inflammation and swelling in my joints. My right shoulder froze up and became very painfull (adhesive capsulitis). Suddenly I could not work out, could not swim, could not windsurf, could not even drive or sleep on my side without severe pain.
My gut, which had always been brittle, started going berserk too: worsening irritable bowel symptoms, more and more food intolerances, and finally constipation so bad I had to manually disimpact myself. As I doctor, I simply wasn’t concerned enough about this, I merely took these things in stride and did what I had to do to temporize—as doctor’s so often do. I dutifully learned how to manually disimpact myself and developed an elaborate routine for trying to manage, key word manage, constipation with ginger, fiber, probiotics, magnesium, enemas and natural motility agents. To be fair, I did want to get to the root cause, but I wasn’t really open to all the possibilities of what that root cause might be. And so I treated the symptoms rather than the system. Good doctor.
Next, a shifty insomnia set in. I would be dead dog tired, but within 15 minutes of crawling between the sheets, I would experience a creeping, twitching restlessness, like bugs crawling under my skin. It was not a restlessness of the mind, it was clearly of the body. My limbs were curling and writhing under the direction of some unseen force that made my muscles turn somersaults inside themselves (fasciculations) from my cheeks all the way to my feet. I would get up and go into another room to read a book. The sensations would subside. Then I would get back in bed and they would start all over again. Eventually I would fall into a fitful, exhausted trance and wake up too soon to the dull gray light of morning feeling hungover and unrefreshed.
My energy dropped like a rock. What exercises I could still do without my right arm seemed to get harder and harder and the recovery times longer and longer and longer, until finally there was no recovery. Just tired.
As a finale, I blossomed into a fireworks show of multiple chemical sensitivities: perfumes, laundry soap, fabric softeners, gym cleaners, windex, you name it. They all set my eyes on fire and twisted my throat into rasping spasms of phlegm and drool. The number of buildings I had to walk out of just to breathe became absurd. Shopping the laundry detergent isle of the grocery store was out of the question.
Refusing the Call.
Clearly something was up with my health, but I just could not figure it out. Oddly enough, I did have some intel on the subject, but I ignored it. My uncle had been going through a curiously similar decline in health with many of the same bizarre symptoms I had been having. He flew all over the country looking for answers. He even went to the Mayo Clinic. Nobody could help him (unless you consider steroid after steroid real help). Not until he helped himself by hiring an environmental health specialist—who diagnosed toxic mold and formaldehyde in his environment and ripped his house apart for remediation—did he begin to improve. But that was all too weird for me (and expensive). I let it pass.
Honestly, I think I was biased against the whole idea of “detoxification", the idea that you might need to assist the body and/or the environment, to eliminate toxins. I mean isn’t that what your liver and kidneys are for? I preferred the idea of addition over subtraction. I was an 80’s kid remember. Just add good things to the body and it will sort out the rest, right? Add enough good food, good movement, good sleep, and a little meditation and the liver and kidneys will detoxify you even if you live in a junk yard.
Such bias was firmly rooted in my education as an allopathic physician. I had been trained to think that “cleanses" were hype and that the word “detox” was ill-defined and overused. I thought colonics were voodoo. I thought juice cleanses were anemic and cruel. I thought activated charcoal was only for acute poisoning. I would never have dreamed of using a pharmaceutical binder like cholestyramine off-label, as a detox agent. And OMG, why would anyone need to tear their house apart looking for mold? Mold has been with us since the dawn of time. Get over it.
So I refused the call to look at detoxification and the environment as a possible root cause for my downward spiral.
Instead, I adopted a policy of masterly inactivity.
Actually, that’s not quite right. What I adopted, was a policy of masterly distraction. I doubled down on all the dietary protocols I could think of that focused on coping with IBS symptoms and allergies: Low FODMAP diets, elimination diets, gluten-free, dairy free, etc, etc. Funny enough, all these approaches involved their own form of subtraction, which is why, of course, they helped at all.
Reprieve and Relapse.
Eventually it was more than bias that blinded me. It was fear of change, massive change. I didn't want to rock the boat, or worse, capsize it. My wife and I had been planning a trip to France for our 20 year Anniversary and I really wanted to hold myself together—with bubblegum and bailing wire if necessary—to make it happen. Now was not the time to open up the detox can of worms and take a peak.
It was now 2016. I had been dealing with this stuff for 18 months. I could deal with it a little longer. One of the things that happens when you go from being acutely ill to chronically ill is that you start making decisions out of a desire not to be a burden to others, rather than from a place of genuine insight or advocacy for yourself. Which means that anything that might be expensive for your loved ones or inconvenient or involve a big timeout will not be considered.
So we left the country, Janine with her nicely packed carry-on, and me with my bag of bubblegum and bailing wire.
But a funny thing happened along the way to the french countryside, BAM!, my symptoms improved. Yes. Wow. Wonder of wonders, the rash on my backside disappeared after 3 days in France and so did my constipation. These symptoms had been a Pharaoh's plague on me for the last 18 months and now they were gone, just gone. What’s more, my whole gut seemed to relax. I was able to tolerate foods that I hadn’t been able to eat for more than a year. I was sleeping better, in spite of jet lag. Crazy. Just crazy. Or maybe not.
Strangely enough, this reprieve did not help me connect the dots between my story and my uncle’s story. I did not, for example think, "Oh, maybe there was an environmental stressor back home that was causing my symptoms." Instead, I continued to think of food, food, food—which is a good place to start, unless you’ve already beaten that horse to death. So I just thought, "Oh, all this non-GMO food here and low pesticide residual is doing wonders for me."
I’m all for non-GMO, pesticide-free food. But sometimes you’ve got to pull your head out and look beyond that. Because I was about to fall off a cliff.
Three days after coming back home—three days!—my rash returned with a vengeance. And my body took a toboggan ride into hell.
I have never so rapidly and so completely lost control of my biology (except maybe when I had Noro virus). I started this hacking cough that felt like a scalpel blunt-dissecting my airways. A day later, I was in full-blown, steroid-dependent asthmatic crisis. I plunged into profound fatigue so total I could not walk to the mailbox, or even get off the couch most days. I began dropping weight; it was falling off me in chunks like ballast from a sinking ship, first a little, then a lot, then wholesale, up to a pound a day. Then came the brain fog—the cold and terrible brain fog—rolling in, sealing up every fold of my awareness until I lost all connection with the light, my thoughts circling in darkness like passive little suicide notes around a drain. Our trip to France was a fairy-tale memory from another lifetime. Had I read it in a children's book?
I became so gaunt and wasted that when my mother saw my face, she cried.
A Light in Dark Places.
Somewhere during that time, in a rare lucid moment, I managed to read It Could Be Mold, an article that appeared in the May issue of Experience Life Magazine detailing the problem of indoor air quality and mold. The article chronicled the health crisis of another physician, Jill Carnahan, whose story felt uncannily similar to mine. The story offered hope. And I let it sink in.
I not only read Jill’s story in the magazine, I read her blog and her links and her protocols as well. She became my mentor from afar, my Galadriel, my light in dark places.
Through the fog, I thought back to the time I had choked on that musty fug in our master shower. I began to notice a geographic pattern to my symptoms. My symptoms were worse in the master bedroom and bath and better in my daughter’s bedroom, where I was now camped out.
My daughter's bedroom was a new addition to the house. It was farthest away from everything, farthest from the master bedroom, the shower, the kitchen, everything. It even had a sort of double door airlock between it and the rest of the house. Unconsciously, intuitively, I had gravitated to the place of maximal safety in my home. Interesting.
One day, I remember stumbling out into the kitchen to get a drink of water. In my weakness, I spilled the water all over the place. I knelt to mop it up with a paper towel. Then I opened the cupboards below the sink to throw away the towel. Out rushed this breeze of stale and fusty air. The funky dampness filled my lungs and sent me into a spasm of coughing so severe I thought my head would separate from my body like a cork. Mold. Mold. MOLD. Or something. That had to be it. For whatever reason, I was having an intense reaction to something local and airborne. My immune system, which had been struggling for so long, had finally snapped.
Crossing the First Threshold: Removal of the Patient.
The truth is rarely comfortable, but it's always the answer. —Anne Lamott.
I needed to get out of the house. That was the truth. It was an uncomfortable thought, but not as uncomfortable as the thought of staying sick. As Dr. Laura used to say on her radio show, The Dr. Laura Program, “People don’t change until the pain of remaining the same outweighs the pain of change.” Right.
So, with some trepidation and no small amount of encouragement from the two women in my life who loved me the most—my wife and my mother—I got out of the house. I moved to a small condo across town, blessedly free of charge because it belonged to my parents. What a godsend.
Then occurred the first miracle, the crossing of the first threshold: Within 48 hrs of moving out of the house, I was off my inhalers. Off steroids. Off albuterol. Off! My chest sighed and sank and opened up. It was like breaking the surface of the foaming ocean and washing up on shore.
I dropped my inhalers into a drawer and watched them as they clinked and rolled around. I have not used them since.
In retrospect, I really needed a dramatic and early win like this. Because the rest of the healing journey would turn out to be fraught. It would be long and arduous. If I had known then what I know now—just how long it would take to get my strength and stamina and brain function back, how long it would take to fix the house, how much being sick would strain my relationships, how many diagnoses I would collect along the way—I might have despaired. I might have disqualified myself at the starting gate.
I had passed the first threshold. But the healing journey had just begun.
To be continued...
- Poisoned, Part 2
- Tests, Allies, and Enemies
- An Unexpected Ordeal
- Seizing the Sword and Crossing New Thresholds
- From Limbo to Love
- Poisoned - Part 3
- The Road Back
- When a detour is not a detour
- Is There an Elixir?
- Rachel Madore On Beating Mold. How She Went From Broken to Brave and From Sickness to Success.
Cover Photo by Siyan Ren on Unsplash