Poisoned - Part 3: The Road Back
How Mold, Metals, Formaldehyde and Lyme Broke My Brain and Made Me Ridiculously Sick--and How I Made It Back.
I find that the great thing in this world is not so much where we stand, as in what direction we are moving. —Oliver Wendell Holmes
I Went Down to the River...
I was out of the Inferno. By the grace of God and the long arms of science and compassion, there would be no river Styx for me.
Instead, a broad and glittering ribbon of water greeted me, a serpentine oasis of eddies, boardwalks and reeds: the Deschutes River. It was the much loved and jealously guarded descending artery of my city. And it would become my safe harbor. Here I would spend my summer convalescing: resting, reviewing, and readying myself for the road back. Here I would let mother nature massage me with her splintering sunbeams and cool ripples. Here I would learn, or relearn, the connectedness of all things—even the “bad" things.
I went to the river every day throughout the summer, not to pray exactly, but not exactly NOT to pray either. I went to be engulfed, to be grateful, to wade, to swim, to soak up the streams of vitamin D radiating from the sky and to feel the invigorating snow melts and glacial tangs that eddied through the pines and horsetail.
There was scientific method to my madness, as well as spiritual awakening. At the best of times, these two pursuits have always been one and the same for me.
On the river bank, I entered into a state of mind that researchers call Blue Mind: a brain state induced by the healing properties of water. The mind loves regularity without monotony. And this is exactly what bodies of water have to offer: the always-changing-yet-always-staying-the-sameness of rivers, lakes, oceans, and seas. These rippling regions of rhythm and novelty coax the mind into a state of calm and creative problem solving that we seldom get now in our iJacked world (if I may coin a word). I always thought that people who went fishing were wasting their time, now I saw what deep wells of bio-spiritual wisdom they were tapping into. Nourishing routines. Margin. A state of rest that is not absolute rest but gentle oscillation. A state of regularity without monotony. Blue Mind.
I had a life coach during this time, Krayna Castelbaum, who had the probing habit of asking me:
What’s wrong with right now, without your usual script?
It was a jolting question. But a good one. Because it made me realize that I had this unexamined idea that I couldn't be whole and complete until I was completely well. Was this true?
When I started making a list of the things I was grateful for, it went on for pages and pages, and I felt startlingly whole and complete just looking at it.
And then there were the words of my patron saint, Anne Lamott:
Without bad things happening, there is no story. —Anne Lamott
Anne is right, of course, but I wanted to have a light and airy story, didn’t I? Well, didn’t I? Okay, maybe I didn't know what I wanted. Because tell me this: just how is a weightless story better than a heavy one? The light, the dark, they go together. They always have. What fun would chess be if the rules said white must always win? Or if there where no black pieces at all?
Just so, my experience of getting sick, of getting partially well, of limbo and the in-between was all of a piece, a whole experience, a game of light and dark, up and down, of good days and bad days. So, maybe I didn’t have allies and enemies so much as I had so many teachers of varying hues, some of them frightfully dark and strong, but all of them teachers.
I resolved to make peace with the ebb and flow of life in my veins. Who was I to say that white must always win? Sometimes black would cover the board, like black mold. Of course it would. Would I stomp away and refuse to play the game? Would I refuse the invitation to adapt? This was it. These were the conditions. This was my playing field. I could not take my ball and go home. Neither could I hurry the process. Health was more like a dance than a battle, more like a game to be played over and over again than a Blitzkrieg to be won once and for all.
Often we would walk hand in hand, Janine and I, on the boardwalk over the water, looking down on the swirling tones of liquid green and clay colored foam that circled beneath our feet. Sometimes we talked. Often we did not. But it was enough.
It was the simple things, the smallest currents that made life flow.
When a Detour Is Not a Detour
Lyme Disease and Its Co-infections
After bathing in Mother Nature’s sunbeams all summer, it was time to get back into the ring with one of her more diminutive sensei, Babesia, or B. microti, an emissary from humanity's old school of hard knocks and parasites.
Because let's face it, I was still sick.
I still couldn’t run; it felt like I was mounting up on rubber stilts every time I tried. I still couldn't lift heavy things, or focus for long periods of time (which meant I couldn’t write posts like this one). I still struggled with multiple chemical sensitivity and I often had flu-like symptoms with aches and pains and power outages in the middle of the afternoon.
So Dr. Flattery suggested we test for Lyme disease.
“Um, okay,” I said and wondered if my path had now diverged into a hopeless bog of nonsense.
Even the professionals are confused about Lyme at the moment, so don’t take it personally if you don’t understand why there is more heat than light on this subject. It comes down to a provider’s philosophy for interpreting the Western Blot test. If your philosophy is to EXCLUDE Lyme, you can easily do so. If your philosophy is to INCLUDE Lyme, you can easily do so. That’s why the best clinicians at the International Lyme and Associated Diseases Society (ILADS) say the diagnosis is 80% clinical. In other words, a diagnosis of Lyme disease is primarily based on the patient’s history and physical examination, not lab work. If it walks like Lyme, talks like Lyme, looks like Lyme, feels like Lyme, it is Lyme or one of its associated diseases. Ideally, the lab test is interpreted in light of the patient, not in light of an arbitrary standard.
This reminds me a of quote from my friend and Functional Nutritionist, Andrea Nakayama:
Evidence-Based Medicine is true, but partial. Confidence doesn't come from PubMed, it comes from practicing. —Andrea Nakayama.
Janine’s and my Western Blot tests differed, but essentially they both showed evidence of past Lyme infection.
Neither of us had ever been treated for Lyme disease. Where Janine might have picked it up was anyone's guess. More than half of infected patients never recall a tick bite. But I certainly recalled mine: Switzerland, 1992 (see Poisoned: Part 1). You don’t forget a niggling tick bite like that, one that defiles your nether regions.
- The incidence of Lyme disease in Switzerland is among the highest in Europe, especially in the woods near Bern, where I sat on an old stump every afternoon—in shorts—and practiced my saxophone out of earshot of the nursing home where I worked.
Dr. Flattery obtained a second test, CD 57 (for natural killer cell activity), to gauge the ongoing effectiveness of our immune systems at keeping Lyme under control. Both of us had good CD 57 counts. Lyme might be occupying a fair slice of our immune systems’ bandwidth, but we seemed to be compensating fairly well.
So the interesting issue for me at this point was not Lyme itself, but its co-infections.
Ticks don’t just transmit the Lyme spirochete, they also transmit other chronic infections like babesiosis, anaplasmosis, ehrlichiosis, relapsing fever, tularemia, and Rocky Mountain spotted fever (RMSF). When you get bit by a tick, you can get two or three infections for the price of one.
As it turned out, I had been co-infected with Babesia. And my immunofluorescent antibody (IFA) titer showed that this critter was now active and proliferating.
Babesia is a parasite that resembles malaria. Not only does it look like malaria, it also hangs out in the same place as malaria, the red blood cell, where it can cause the same kind of hemolytic anemia that malaria causes in severe cases. Or where, in mild to moderate cases, it can just make you feel crapy, causing flu-like symptoms of headache, body aches, malaise, and fatigue.
Not surprisingly, Babesiosis is usually treated with a combination of antimalarials and macrolide antibiotics. But this treatment can go on for months, at no small risk to your gut microbiome.
If you have a spleen and a competent immune system and nothing else going on, you might manage babesiosis without treatment. But if your immune system is dealing with Lyme and multiple environmental immune stressors like mold, metals, and formaldehyde, you might need more help (in fact, this is probably why my latent infection had now become active: my immune system had been distracted by the dog-pile effect of environmental stressors and Babesia had simply gotten off its leash).
Dr. Flattery laid out my treatment options, from most aggressive to least aggressive:
- Oral Atovaquone (anti-parasitic) with oral Azithromycin (antibiotic) for 3-6 months! (very hard on the gut)
- IV Artesunate (very oxidizing, can precipitate hemolytic anemia)
- Oral Cryptolepis + Artemisinin (an antimalarial herb plus a plant-derived antimalarial drug that together have a similar side-effect profile to IV Artesunate)
- Oral Cryptolepis by itself (a strong herbal antimalarial and broad-spectrum antibiotic)
- Do nothing, except supportive care, with the hope that the body will throw the infection into remission on its own. (An unlikely happy dance, given my recent immune stressors with mold, metals, and formaldehyde.)
I had tried supportive care all summer and I was still sick. So it was time to up the ante.
But I found myself feeling curiously conservative.
Cleaning up mold in your environment is one thing. But when you ARE the environment that needs cleaning up, when it's your body that needs jackhammering, ripping apart, remediating, and remodeling. Well that’s a little different. I wanted the gentlest therapy possible.
So I chose option #4: Cryptolepis sanguinolenta.
Cryptolepis—aka Ghanaian quinine—has been shown to be 93.5% effective against uncomplicated cases of malaria. How this translated to Babesia, I wasn't sure. I couldn't find a good study. So I reserved the right to change my mind at any time in favor of something else.
The main side effect of Cryptolepis was an increase in the volume of my flu-like symptoms: headache, body aches, malaise, and fatigue. Awesome. Apparently, this meant the treatment was working: the Babesia bugs were supposedly dying and spilling their toxic guts into my blood stream, so everything was getting worse before it got better. The symptoms came in waves, usually about 2 hours after each dose. I had to cut the dose back several times in order to stay productive.
Eventually, I couldn't take it any more. I stopped aggressive treatment altogether. I opted for purely supportive care instead.
I spent a month convalescing at a treatment center in Florida called Lifestyle Healing Institute, where I received IV glutathione almost daily, along with a personalized cocktail of vitamins, minerals, trophic factors, and hormones (taylored to my labs) to reboot my body's ability fight disease on its own (plus intense psychological support). This helped.
When You're Back But Not the Same
So where am I now?
Well, as of this writing, I have improved enough to do this writing. Yay! I can also run and sprint again. Double yay!
For a long time, my flu-like symptoms persisted. They came and went and were sometimes severe enough to shut down my day, or ruin my sleep. This made it difficult for me to commit to projects or timelines for months on end. I had to do things when I could, not necessarily when it was time. In other words, I had to come to terms with the idea that I was not entirely in control. But what an amazing lesson. Because who of us is ever entirely in control? We are responsible to our disease, not for our disease. We have agency, not control.
Am I resurrected?
I’d say I'm mostly back, but also mostly not the same. Few resurrected people come back exactly the same (I'm told). I’m not sure the old me was all that great to begin with, so why would I want to come back the same anyway?
Here are some things I've learned on the road back that have changed me:
First, I have learned that there is spaciousness. There is room. Room to be sick. There is room to let things take the time they take. There is room to walk the many pathways of human flourishing (and suffering) and pass along what I find.
I am less afraid to be an amateur and show my work. I am less of a white coat answer man and more of a road warrior with wins and losses, successes and failures, victories and defeats. I am less afraid to live and share my experiences without my expert face on.
The obstacle has become the way: a way of living. How I do anything is how I do everything. I have become a student, not just of my own body, but of the intimate web of relationships that my body relies on for health, the thousand umbilicals, if you like, the web of connections that makes me one with my environment.
In short, there is Awareness.
And it's a filamentous awareness, with threads that go out and out and out and back and back and back, as if I am woven into a tapestry.
It's not merely that my awareness extends beyond the borders of my body, it’s that my body itself extends beyond the borders of my body. I am a shared space, a venue, that houses microbes, molecules and memes from my environment.
For example, are you aware that there are more bacteria in your gut and on your skin than there are human cells in your entire body? Bacteria cells are much smaller than human cells so it all works out, size-wise. But that's still amazing. There is more of you that is not you in you, than you. Humans are less like separate things walking around in their environment than they are like smears or smudges walking around that allow the environment to shine through them. We are biological transparencies. The outside is the inside. The inside is the outside.
It follows then that I cannot be radically healthier than my environment. Whether we’re talking about food, or movement patterns, or chemicals, or air, or water, or mold, or microbes, or the milieu of my own mind (is my mind a "bad neighborhood”? as Anne Lammot would say), I am always connected, always tethered to the world around and within me.
Put simply: my health is bigger than me.
This thing I call “health” is not one thing, it is not even a thing I really “possess" within me. It is many things. It is the new (or old) medical ecology of food, movement, sleep, environmental stress, and connectedness, in which a life of restoration for me is a life of restoration for my environment, is a life of restoration for your environment, is a life of restoration for everyone’s environment. Again, how I do anything is how I do everything.
And it isn’t all up to me, either. I have influence and agency, to be sure, but I am not completely in control of suffering; that is a dance with nature herself and all her teachers—however severe those teachers may be.
It's made me think. And rethink. Suffering is endemic to life. That’s not a news flash, and yet it feels like a brick to the head when it happens. You could curse God and die. You could leave this world behind and take all of your grievances with you. You could. I thought about it. But in the end, I chose to find meaning by developing character in the face of suffering. That seems like the best plan to me, since any human who lives long enough will be able to sit down and tell you a story that will break your heart.
So even my relationships are different.
Especially with my wife: I am less reactive and more patient, less embarrassed by my limitations and more willing to simply engage in mundane ways: cooking, reading, walking, talking, listening, silence, silence, silence, and healing touch. In some ways absence did make the heart grow fonder, or at least it helped the heart wake up to the truth that we can never not be connected, that we can only lose our sense of connection. Our marriage coach, Krayna, helped us see that. Which by the way, makes this as good of a place as any to say, there is no shame in asking for help.
If that’s all my ordeal came to teach me, then I will gladly rehearse it. Daily. It can never be repeated too often, since it can never be learned too well.
Is There an Elixir?
Not exactly. There is no Magical Elixir, with a capital “E”, that will overcome the grand forces of death and impermanence in this story or any other real life adventure. None of us is getting out of here alive, in any traditional sense of the word.
But there might be an elixir with a small “e”. If so, it would be something like this: be kind to yourself and believe you can be well.
When I say be kind to yourself, I mean be kind in all ways: be kind to yourself with food, movement, sleep, stress, and connectedness. Take your medicine, Take walks, Hold hands. Take time for your key relationships. Take out the trash in your life. And Believe. Because every cell in your body is listening to your thoughts.
Notice how you cannot do any of these things without being kinder to the world around you. The outside is the inside. The inside is the outside.
That’s what I’ve learned on the road back. And that’s why I feel like I’m back but not the same.
Yours in Health and Resilience,
Marc Wagner, MD, MPH, NTP.
P.S. In my next post, I share with you some protocols that are helping me heal right now, some of my elixers with a small "e". I take you on a practical tour of my daily routines: food, movement, sleep, stress, and connectedness, with a special section on supplements and medications. Check it out.
- 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
- Poisoned - Part 2:
- Tests, Allies, and Enemies
- An Unexpected Ordeal
- Seizing the Sword and Crossing New Thresholds
- From Limbo to Love
Links in This Series:
- Lifestyle Healing Institute: Chronic disease and lyme treatment center in Naples, Florida, using tailored all natural treatment protocols.
- Blue Mind: Why being around water is so good for our psyches.
- Krayna Castelbaum. Clear Lens Coaching.
- International Lyme and Associated Diseases Society
- Cryptolepis: an antimalarial treatment.
- 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