My Life as a Canary in a Coal Mine - Part 2
How Mold, Metals, Formaldehyde, and Lyme Disease Made Me Ridiculously Sick and What I’m Doing About It.
The random aspects of our lives come together, once in a while. So blinding and decidedly. — Simon Le Bon
Noun. From the latin Limbus, referring to the “edge" or “boundary”—the edge of hell.
This is where I now sat, on the edge of hard things: having successfully scrambled out of a constricting pit of asthma, gratefully breathing air again without inhalers, yet very aware that the fumes of illness were still somehow rising up to meet me.
I had removed myself from my moldy environment. So far so good. But that was only half the battle. The other half would be to remove the moldy toxins from my body.
Not that I really understood all this at the moment. All I really understood was that my condition had improved enough to discover just how damaged I was.
With the urgent need to breathe no longer occupying my attention, I realized to my horror that I was a total ship wreck. I was a husk, a hull of ribs and rivets. My fit weight had been a lean 145 pounds. I was now a skeletal 124 pounds and as weak as a dish rag. I had to crawl on all fours to get up a single flight of stairs. When I tried to climb even the smallest hill, it felt like I was attempting Everest. It was like someone had turned gravity up on the planet, to eleven. Every move I made was encased in lead.
My balance was off too. I nearly cracked my head open just trying to get in and out of the tub, several times. I had not learned yet that mold toxins (mycotoxins) can affect the coordination center of the brain, the cerebellum. All I knew was that I was having a hard time staying upright.
Worse, I could not read. That’s correct. I. Could. Not. Read. I could not resolve the letters of the alphabet for more than two or three sentences before the effort exhausted me. Later I would discover how mycotoxins can poison the optic nerve and decrease the ability to detect visual contrast. That, combined with persistent brain fog, made reading and retaining information—two things I had once been good at—very difficult.
Even my verbal skills had winked out. The language I had relied on as my superpower, the language of Chaucer, Churchill, Dickens and Dr. Seuss, had deserted me. I was having trouble with um, um. Gawd! With um. Nouns! Where were they!? English fell apart on my lips and dribbled off into a loose collection of indefinite articles, prepositional phrases that led nowhere, dangling modifiers that modified nothing. I was so embarrassed by my mumbling and stumbling that I barricaded myself in my room like a child and would not talk to anyone. I was afraid. Because the only noun I could think of was dementia.
Lastly, I was cold. So cold that I spent most of each day sitting in front of the fireplace with my sweater on. In June.
Clearly I needed to see a doctor, not be a doctor, see a doctor. But who? Who would believe me? To which of my colleagues would I entrust my story? After all, they had been through the same book learning process and attitude learning process I had been through. If my uncle’s story was any indication, I’d probably get a battery of expensive tests—everything from a banal blood panel to an eye-popping endoscopy—all to assure me there was nothing wrong with me, nothing to see here, move along, step around the police tape, case closed: have some steroids, try this antidepressant, take a vacation, eat something. I knew what it was like to see patients like me, who simply looked neurotic and depressed, I knew what it was like to see them coming through the door with their bloodshot, mongoose eyes and to have only my comfortably narrow tool set to work with, to judge with. It was so easy to dismiss them. So easy to be a holocaust denier, when the holocaust never happened—to me. I had been an exemplary member of the disease police that told people which conditions they could and could not have. I had been that guy I was now afraid to go see.
To be fair, I probably just had a guilty conscience. But still, there is nothing more lonely and terrifying than to think you might be patronized by your own profession.
I would chose my allies carefully.
Tests, Allies, and Enemies
My wife can tell you how reserved I was when I first told Jennifer Paulson FNP my story, how laconic and lean was my History of Present Illness for this wonderful Functional Medicine Practitioner who believed me from the start. I said I had been having some challenges with asthma and fatigue. Having some challenges. And that I thought it could be mold.
Anyway. She got the picture (with some hints from my wife).
I had my first clinical ally.
After a detailed history, timeline, and physical exam Jennifer suggested that we do three things:
- Test my urine for the presence of mycotoxins. And test my wife as well, since she had been in the same bedroom with me.
- Test for heavy metals, because metal overload can set the stage for inflamation like I was experiencing.
- Consult with a local specialist to treat Mold Biotoxin Illness.
So we had a plan. A place to start. All without raised eyebrows or blank faces. I was in the slipstream of compassionate knowing.
In addition to testing our bodies for mold, we would test our home.
I won’t bore you with the details of the three-ring circus we endured trying to find reliable mold contractors, people who would actually show up at our house, return phone calls, or do anything besides say “yep, sounds like you’ve got a problem". Such nonsense would have been exasperating enough for any self-respecting healthy person, but for me, fatigued and fogged as I was, it was overwhelming. Honestly, my wife had to make most of the arrangements.
Finally, after a month of false starts, we found someone reliable: Thomas Nadermann of Mold Investigations, LLC. Our second ally.
Thomas promptly identified several types of mold colonizing the sheetrock behind our shower and elsewhere. One of the strains, penicillium, matched the mycotoxin profile that had just come back on our urine tests showing Gliotoxin and Ochratoxin A. So here we had a match between a biotoxin in the environment and a biotoxin in our bodies. As well as correlating symptoms.
Ochratoxin has a strong affinity for the brain, especially the cerebellum (balance) and the hippocampus (memory). No wonder I was tripping over my limbs and groping for words. It also inhibits ATP production in the mitochondria: hence, brain fog and profound fatigue. Gliotoxin on the other hand, causes immune dysfunction. You don’t say.
You may be asking why I was so much sicker than my wife, given the same environmental exposure.
Well, it comes down to genetics, what is stenciled into our DNA.
About one in four people have the right HLA (Human Leukocyte Antigen) gene variants to get spectacularly sick from mycotoxins (HLA DRB1, HLA DQ2, etc). Turns out, I had several of these variants. I was like a genetic booby trap just waiting for the right environmental exposure to pull the pin on my inner grenade. (This doesn’t necessarily mean my wife was unscathed. We’ll get to that.)
- Here's how it was explained to me: HLA genes code for major histocompatibility complex (MHC) proteins that allow the immune system to deal with very tiny biotoxins like those produced by household molds and, incidentally, Lyme Disease. Variations in these HLA genes can make a person profoundly susceptible to the effects of these low-molecular weight biotoxins: the immune system will fail to recognize them and clear them efficiently. The toxins will then build up, and up, and up, until BANG, the person is dead, or more likely, just feels dead, or wishes they were dead. Such a person will need assistance to detoxify.
Assistance was on the way, but not yet. I had more bad news to collect and a few more grinning enemies to get to know.
Better living through chemistry isn’t always easy. You pay the price of the myth.
While testing our house for mold, we discovered that the air next to our bed exceeded the EPA limit for formaldehyde by 5.5 times! The poison was apparently off-gassing from the foam topper on our "organic" bed.
I know, right.
Formaldehyde is known to produce insomnia and respiratory symptoms, among other things. It's hard to get a mattress without it because of silly government regulations. For more information, see my post: Sleeping with the Enemy: What Is Formaldehyde Doing in My Bed?
Given my multiple chemical sensitivities, we figured formaldehyde was not helping me. I verified this assumption when I inadvertently put wrinkle-free cotton sheets—which are treated with formaldehyde—on my bed at the condo and woke up the next morning with a stuffy nose, a headache, and that same fuzzy, motion-sick feeling I always got when my limbs had been windmilling all night. I changed the sheets and the problem went away. Silly rabbit, formaldehyde is for dead people.
As so often happens, mine was a case of different threads leading to the same tangle.
Another strand of the narrative was heavy metals.
My provoked urine test came back positive for lead, 10 times the reference level, in fact. Thoughts of Flint, Michigan came to mind. But it was not coming from our water. It was not coming from anything in our immediate vicinity. This was just the resurfacing of old news. Remember how in Part 1, I told you that my hair follicles had tested positive for high levels of lead in 2006? Well, this was a confirmation of that test.
Lead stored in your bones has a half-life of several decades. After much reflection, we decided that my lead exposure had probably come from the house we had lived in previously for 11 years during medical school, residency, and fellowship. That house had been built in the 1950s. Lead pipes were still in use in the 50s and even if the house had later been retrofitted with copper pipes, lead could still have been an issue, because lead-based solder was used to join copper pipes until 1986.
Janine’s lead levels also came back elevated, but not as high. Again, different people detoxify at different rates. Apparently, I was retaining more lead, like I was retaining more toxins in general.
Lead was probably not playing the lead role in my acute symptom complex, but it certainly wasn’t helping. The main toxic effect of lead is its ability to simultaneously generate more reactive oxygen species (ROS)—aka Free Radicals—and thwart the body’s attempt to clean them up by inactivating glutathione, the body’s master antioxidant.
A person with significant body burden of lead will then get more inflamed by any given environmental stressor—be it a toxin, an infection, a drug, alcohol, exercise, jet leg, or relational angst—than a person without significant lead burden. And it will take them longer to recover from each stress episode. (Later, I would test positive for impaired glutathione production and start both IV and oral glutathione treatment, but I get ahead of myself).
Even at relatively low levels, lead can participate in synergistic toxicity with other metals, most famously mercury. I still had mercury fillings in my teeth from the swaggering 80s. So, in addition to a slow detoxification protocol for lead, I would now be getting my dental amalgams removed by a biologic dentist, my third professional ally.
I had non-professional allies too. But not many.
I was too embarrassed of my emaciation and cognitive wreckage to let most people near me. The BioFlourish guy was NOT flourishing. How awkward. This is the danger of letting your digital self hijack your ability to be authentically human. Anyone with a Facebook account can probably relate. It’s never been easier to hide in plain sight.
At the end of the day though, it was more than embarrassment that kept me isolated: I just didn’t have the bandwidth for more allies.
Which brings me to the emotional low point of my story: the unraveling of connection with my wife.
An Unexpected Ordeal
We can never not be connected. But we can lose our sense of connection. — Author Unknown
Watching your spouse go through hell is its own kind of purgatory. My wife had a front row seat. She held up bravely at first—ministering to me, checking on me, making sure I was taking care of myself, and so on. But eventually she had to hunker down and take care of things—things like daily life—on her own. My hand was off the tiller. She had all her usual responsibilities, plus all my loose ends to deal with: kids, meals, trips, homeschool, bills, business, contractors, and more. At a stroke, she had become a single mom.
Meanwhile I stumbled on in a haze. It was like someone had hit the dimmer switch in my brain and there was nothing but a dull gray light to live by. A wooly fatigue had settled over me and a slow low-wattage depression lit my days.
Thus began the strange dance of creeping separateness between us, my wife and me. The long slow hurting.
For reasons of her own, Janine chose not to follow me to the condo across town. I wouldn’t be far away, she reasoned. It would be easy to visit. It would be less disruptive to the kids and their summer neighborhood friendships. There were animals to take care of at the house. She didn’t feel mold was making her sick. The peace and quiet would be good for me, hadn’t I said so, etc. You see where this is going. We would live separately. We would try it, at least for a while, at least until it was clear how long mold remediation would take. We thought our relationship was strong enough to handle it.
I don't recommend this. Solitude isn’t always as healing as it sounds.
No matter what else is going on in your life, there is something incredibly sacred and soothing about waking up every morning with your toes touching the toes of someone you love. I believe there is physical healing in this. But it's more than that. There is just something about the gentle, daily weaving together of a life with your partner, with all its bumps and brushes and love pats and stolen moments, that cannot be replaced by phone calls, visits, dinners together, marriage counseling, or any other valiant attempt to connect. We had lost our shared space. We had forsaken our peninsula of intimacy, our proximity. And we paid for it. Dearly. Bravely going through the frozen motions of being a family on weekends.
We are who we are in relation to each other, not merely in relation to ourselves.
I have a new respect now for the difficulties of marriages in which one spouse travels a lot—or gets deployed to a foreign country. This is not an easy road. Hats off to any of you who are managing this and managing it well.
We did not manage it well.
Seizing the Sword and Crossing New Thresholds
Finally, I was introduced to my fourth ally, Payson Flattery, ND, who had experience treating Mold Biotoxin Illness.
Dr. Flattery wasn’t surprised by my bizarre panoply of symptoms. He’d seen it before. He immediately started me on a pharmaceutical binder, Cholestyramine, to help me trap and excrete mold toxins, following a well-worn protocol developed by Ritchie C. Shoemaker, MD, who has used the protocol to successfully treat thousands of patients with Mold Biotoxin Illness. Essentially, cholestyramine would bind the mycotoxins in my bile secretions before they could be reabsorbed via the gut, thus giving my body a chance to breathe—or in medical speak, it would interrupt enterohepatic circulation and reduce my toxic burden so I could heal.
What did I have to lose? I seized this pharmaceutical sword and wielded it exactly as directed, one chalky gulp at a time, four times a day. Within a week of starting the protocol, I was able to walk three miles and negotiate small hills without having to stop and rest. A small miracle. (Incidentally, my wife started taking cholestyramine as well and reported a modest improvement in her own energy and mentation. Maybe she was not as unfazed by toxins as she thought.)
I crossed other thresholds in relatively short order:
- Stairs - I went from crawling to walking upright, holding the rail.
- Balance - I went from awful splashdowns to standing calmly on my paddle board, stable as an aircraft carrier.
- Reading - I went from reading only two sentences to reading two pages before needing to rest my eyes.
- Exercise tolerance - I went from absolutely no stamina to tolerating 20 minutes of yoga at a time.
- Mass - I gained 5 lbs.
- Libido - I went from zero to hero (just kidding). But things did begin to stir.
I cannot overemphasize what a huge difference cholestyramine made—and how quickly it worked. I had been languishing for nearly a month in limbo before I finally saw Dr. Flattery and started aggressively detoxing with oral binders. How many rings of Dante’s Inferno could I have skipped if I had started right away?
From Limbo to Love
Love has to be made and remade. Like a bed.
Or life gets untidy.
Now, it goes without saying that my libido had been nonexistent, kaputt, washed up and washed out, nada. And this was hard for me—sensually, spiritually, symbolically, relationally. Now it came rushing back almost too forcefully for me to know what to do with it. I know that sounds goofy, but work with me for a second. You have to understand, I had been out of commission for a while. Worse, I was embarrassed and standoffish about it, which led to all sorts of awkwardness. If you don’t think you would ever feel awkward around your mate, wait until you’ve had a serious illness that emasculates your body, wrecks your mind, drains your confidence, and corrupts your sense of connectedness all in one fell swoop. You will wonder where you stand.
Janine had been wanting to connect physically and emotionally with me for weeks, but I had been too sick and uncertain of myself to send her any clear signals. And every botched attempt made me feel more graceless and isolated. All the pimply awkwardness of 8th grade came rushing back. She loves me, she loves me NOT.
So, when the joy of rediscovering each other finally came, it was indeed a deep and long-looked-for joy. Words came back, strength came back, mass came back, the lights came on, I was turned on.
And there was poetry in it. As goofy as it sounds, I could write again:
for blue sky, green grass
and morning rituals
for intimacy and erotic connection
with my wife
for not feeling like a sick person
when I am with that person
strong, passionate, virile, alive
for bold coffee
and fires at my back
for time to write
and the dissipating sense of lack
replaced by muchness, enoughness
and moments gathered one by one
one grain at a time through the hour glass
I guess that’s how the future’s done
Traversing Light Years
With two simple interventions I had gotten 80% of my life back. Merely by removing myself from a toxic exposure and taking a binder like cholestyramine, I had traversed light years of brain fog and fatigue and gotten the home fires burning again.
Of course, there were still things I couldn’t do. I couldn't run, for example (I had been a good sprinter), or lift heavy things. I couldn't focus for long periods of time. The remaining 20% of my recovery would take time. It would take all summer, in fact, and a good portion of Fall. But I was on the road back. A resurrection was coming, a reconfiguration of body, mind, and soul, I could feel it...
To be continued...
Next: Poisoned - Part 3
- The Road Back
- When a detour is not a detour
- Is There an Elixir?
Previously: Poisoned - Part 1
- My Ordinary World
- The Wake Up Call
- Refusing the Call
- Reprieve and Relapse
- A Light in Dark Places
- Crossing the First Threshold
- Rachel Madore On Beating Mold. How She Went From Broken to Brave and From Sickness to Success.
Summary of Links:
- It Could Be Mold. Article in Experience Life Magazine.
- Jennifer Paulson, FNP. My Functional Medicine Practitioner.
- What is Functional Medicine?
- Mycotoxin Testing by RealTime Labs.
- Urine Toxic Metals by DoctorsData.
- Thomas Nadermann, Mold Investigations, LLC
- Ochratoxin A.
- HLA (Human Leukocyte Antigen) and Biotoxin Illness.
- Sleeping with the Enemy: What Is Formaldehyde Doing in My Bed?
- Lead-based solder in copper pipes until 1986
- Payson Flattery, ND. My Naturopath.
- Cholestyramine protocol
- Enterohepatic circulation