Where’s The Poop, Robin?
Where My Healing was Hiding
Part 2: Sniffing It Out
Trigger Warning: This post discusses controversial and critical views of Chronic Lyme disease, chronic illness, mental illness, trauma, health, medicine, religion, politics, and just about everything. It is intended to express my personal perspective, for exploring the many facets of physical and mental well-being that I found conducive to healing. Some ideas may cause discomfort if one has not experienced a similar stage in their journey, and/or one has not found the resources to understand them in their intended context. I explore paradigms that I myself at one time considered offensive, but in my healing journey have found the capacity to inquire and even embrace. I am not a medical professional and this is not medical advice. Please engaged with these thoughts only relative to your individual capacity to receive them, and allow yourself safe distance if you find them overwhelming. Personally, I believe our triggers are our greatest teachers if we learn to converse with them gently, but one must first come to a place of internal safety.
This is Part 2. In Part 1, I discussed my paradigm shift from germ theory to terrain theory, and highlighted the role the sympathetic nervous system plays in weakened immunity and susceptibility to chronic illness, when dysregulated by chronic fear and stress. I think the mind deserves a more prominent look in the causes of Lyme – or any disease – becoming chronic, which is unfortunately a tough subject to approach given its proximity to psychosomatic gaslighting and victim-blaming. Are we hiding the very thing that would heal us?
Where’s the Poop, Robin?
If you haven’t binged “How I Met Your Mother” yet, “Where’s the poop, Robin?” is a question Lily asks her friend Robin when she’s not being entirely honest about her emotional management after a break-up. Inspired by Lily’s childhood dog, Bean, who would get a certain look on his face when he’d secretly pooped somewhere in the house, it means “There’s more to this story than you’re telling me. What are you hiding?” Robin keeps insisting she’s told the whole story, but Lily can smell poop hiding a mile away.
I feel like this is my new standard question about Chronic Lyme. Not that we Lymies aren’t being truthful; we just tend to start our Lyme story with the day we felt unusually unwell (implying there’s a “usual” unwell, a problem we need to discuss!), the day we got bitten, or the day we got diagnosed, as we are led to believe is the relevant beginning. But I have not met a single one, myself included, who doesn’t have the other story. The “before” story. The hidden story. The coil of poop behind the curtain that’s stinking up the whole joint, but blaming it on the coil of spirochete. It’s never just tick-borne infections. There’s always more to the story: what happened in our lives before the infection?
Where’s the poop, Robin?
We all have a past, and I think it matters. It may be the key to healing, particularly if the Stress –> Sympathetic Nervous System –> Immune System pathway is the road to chronic illness. Before I divulge my own story, I’ll illustrate the paradigm I was in before I accepted this myself. It’s Chronic Lyme Disease. The patients find themselves in a downward spiral of debilitating symptoms. Some get a positive Lyme test early on, while others are diagnosed with mental illness, viruses, hormone imbalances, or dismissed as being too stressed, depressed, or attention-seeking. Eventually we’re all diagnosed with tick-borne diseases, and besides the voracious appetite for treatment options comes the insatiable need for answers: when was I bitten, but never saw the tick or rash? Or, I did get a rash, and got treatment right away, so why didn’t it work? I was fit and healthy, so how could this have taken me down? Why didn’t this happen to my family/friend/neighbor with Lyme? We’re desperate for answers, to maintain any sense of control and sanity.
The narrative generally falls into one of these lines of reasoning:
1) The antibiotics didn’t work because they didn’t target the correct co-infections, so my body was too overwhelmed with pathogens/inflammation to recover;
2) Diagnosis and treatment started too late, so my body was too overwhelmed with pathogens/inflammation to recover;
3) I’m immuno-compromised by another disease/treatment, so my body was too overwhelmed with pathogens/inflammation to recover;
4) I was bitten and got infected a long time ago, but my immune system was healthy enough to fight it off, until years later my body became too overwhelmed with stress/pathogens/inflammation and the disease re-activated.
I’m not saying these narratives are wrong. I oscillate among them myself some days, trying to make sense of what I’ve just been through. The Unknown is the most uncomfortable and fearful place to be. We need explanations. In fact, some of the best medical research on this is from Dr. Richard Horowitz’s Lyme-MSIDS (Multiple Systemic Infectious Disease Syndrome) model, which lays out sixteen overlapping explanations that contribute to chronic illness:
1. Lyme Disease and co-infections
2. Immune dysfunction
4. Environmental Toxins
5. Functional medicine abnormalities/nutritional deficiencies
6. Mitochondrial dysfunction
7. Endocrine abnormalities
8. Neurodegenerative disorders
9. Neuropsychiatric disorders
10. Sleep disorders
11. Autonomic Nervous System dysfunction and POTS
13. GI disorders
14. Liver dysfunction
15. Pain disorders/addiction
16. Lack of exercise/deconditioning
That’s a lot of poop, and it’s not really hidden anymore in the Chronic Lyme community; we toss around countless ways to test, treat, and manage all these things, in a decades-long checklist of killing Lyme and cleaning up the whole poop-show of Lyme and managing Lyme and healing Lyme. What I’m questioning here is my narrative of what sonofabeech dropped these 16 deuces and when they were dropped. Often, the assumption is that Lyme – any of the tick-borne diseases – is the cause of all these factors, as I discussed in Part 1, or possibly some other pathogen contributed. Name ANY symptom in a Lyme forum, and someone’s going to say, “Yup, Lyme does that.” What I have had to reconsider most is that maybe the hidden poop – the root cause, the back story that never gets told – caused any or every one of these 16 points, and Lyme is just the scapegoat; it’s the only one with the name, diagnostic tools, and publicity to grab my attention enough to be able to address it. I’ll take it! Anything with a name that isn’t Latin for “crazy”! Finally! So I’m a Lymie now. Because that’s what makes sense. It’s the only diagnosis with a cause (pathogen), rather than a “You Feel This Symptom All The Time Idiopathic Syndrome.”
For example, if I had allergies most of my life, or back pain, or headaches, or irregular periods, and never got a concrete diagnosis besides “growing pains” or “heredity”, suddenly after I get really sick and spirochete antibodies are detected in my blood, I’m trying to blame Lyme for my entire life of symptoms. Must have been there since I was a kid, and just got “re-activated.” I grew up in Pennsylvania; my mom used to pull ticks out of my scalp after every summer hike. I feel like the Chronic Lyme Paradigm encourages me to believe every possible symptom and sickness I ever had was really Lyme, and every symptom or sickness I have in the future will be from Lyme, and every idiopathic disease in the entire universe is really Lyme.
It’s not necessarily wrong. I want to point out that these were my beliefs; I’m not judging or insulting them, or belittling people who are still operating in that paradigm. We’re all just trying to get well with the resources – and paradigms – we are given. But it’s not necessarily always right either; we carry many life-long pathogens in our bodies, from chicken pox, mono, cold sores, etc. Why not blame everything on Chronic EBV, or gluten intolerance, or MTHFR mutation, or insulin resistance? Could we? Many functional doctors do. There’s an “everything is thyroid” doctor, and an “everything is mold” doctor, and “everything is insulin resistance” doctor, and an “everything is nutrition” doctor, on and on. Does it all come down to which diagnosis was given with the most compassion, conviction, and comfort from the doctor? Which one had the best resources in our area? Which one made the most sense? That’s not wrong either – it’s only natural, and possibly only good for our mental health in the short-term to just feel like we have SOME ANSWERS and an action plan to move forward.
But in achieving remission, I have to consider the possible pitfalls of labeling everything “Lyme.” I need to undo that “it’s all Lyme” paradigm, or I’m going to have a relapse panic attack every time I have indigestion or menstrual cramps. The Catch-22 (impossible disease!) is that revisiting the “what’s wrong with me if not Lyme?” question is in itself traumatizing: the fear, the Unknown, the gaslighting. But alternative functional medicine diagnoses aren’t going to help me either; any thought that “it’s my incurable disease flaring up” is going to leave me in that unhealing sympathetic nervous system mode – at war with those myriad invaders I mentioned in Part 1. Any way I look at it, I’m left with PTSD.
Modalities like DNRS from Annie Hopper, the Curable app, Jessica Maguire’s Vagus Nerve Masterclass, and other nervous-system retraining programs are often used by chronic Lymies based on the premise that the trauma and stress of having Lyme Disease is what got the sympathetic nervous system “stuck” in fight-or-flight mode, and perpetuates chronic illness. This is a totally valid hypothesis, worth exploring, and likely necessary, as part of a Lyme treatment protocol. That was my original narrative, the reason I opened my mind to PTSD therapy. Getting Lyme was traumatic. My body definitely needed a reset from all the terrifying symptoms.
But I gingerly have to revisit the question, “What if the PTSD isn’t all Lyme either?” What if MSIDS point #11 - “Autonomic Nervous System dysfunction” – or rather Sympathetic Nervous System dysfunction – is the root cause of all disease, through the immune-weakening chemical release from the stress response (mind-body, terrain theory)? What if it’s not dysfunction at all, but the ANS doing exactly what it’s supposed to do – keep us safe and regulated from perceived danger? What if the dysfunction lies in our stressful relationship with our environment and ourselves, always perceiving danger? What if MSIDS is, in actuality, the list of disorders that traumatic or chronic stress, rather than (or in addition to) tick bites, makes us vulnerable to, when our nervous system gets chronically stuck in “fight-or-flight” mode? Do we actually suffer Multiple Systemic Stress Syndrome? Is traumatic stress the original condition that made me susceptible to Lyme and coinfections, and the preoccupation with Lyme pathogens prevented me from healing the root cause? (If you have the book, the singular story of “Barbara” in chapter 12 of “Why Can’t I Get Better” by Dr. Horowitz is what I’m honing in on here.) What came first? The Lyme or the traumatic stress? Given the brain’s highly effective coping mechanism of blocking traumatic memories, I have to ask, “Where’s the poop, brain?” Is it hiding something from me that was taking down my immune system before the tick bite?
I say revisit the question “What if it isn’t Lyme?” because many of us have already asked this question early on, when the doctors couldn’t find anything, some labs were negative or inconclusive, the treatment wasn’t working, or it took a few tries to find the right combinations and diagnoses of coinfections that made any improvement at all. Many of us had to submit to the Lyme diagnosis because it’s all we had a name for, and it turned out to be a good call that allowed us to seek the right treatment and see life-saving results… to an extent. And though it didn’t solve all our problems, at least it offered an explanation for them; sometimes it’s necessary for mental health to stop asking, “What if it’s something else they’ll never ever figure out?!” and just accept the long Lyme road for any sense of direction, clarity, or closure.
But what if… when I’m ready to process it… I consider, what if Lyme is just another manifestation of an already-compromised immune system? What if Chronic Lyme is just another symptom of ANS dysfunction, of post-traumatic stress, caused by a different trauma?
Eep! Those are fightin’ words. I know this. So I tiptoe around this issue (or step quite deliberately right into this pile of poop, as it were, after a trigger warning), because I know we’ve all been there, and it’s upsetting, and there are certain portions of the Lyme road where you have to reject this line of thinking to maintain sanity. And it may actually be a necessary step to set tunnel vision on Lyme in order to gain the tools needed for deeper healing, like learning to be your own health advocate. But also, I suggest, there may be stages of the journey where it needs to be safe to explore those deeper layers (usually facilitated with trauma-informed therapy). At least, that’s my road map. I know what my real story is, and I know it’s not just Lyme.
First, I have to admit, I wanted it to be Lyme. The Lyme community is one of the best I’ve been a part of; it is there for me in my worst times, with unmatched grace and humor, non-judgment, and the uncanny ability to make the most fun out of the most debilitating. But as I embarked on a journey of healing mind and spirit in conjunction with the body, I started to hear, over and over, that a big hurdle to healing is fear of losing one’s identity along with the diagnosis. If your identity and purpose comes from being a Lymie, a Warrior, a Spoonie, then a very real and valid (but subconscious) part of your mind (and body) may be afraid of healing; without the illness, you don’t know who you are anymore. This is so natural; Lyme steals pretty much everything – career, education, friends, hobbies, goals, dreams, travel, holidays, food, even the mind and personality – so all that you’re left with is the identity you have in being a fighter. If the battle is won and you don’t have to fight anymore… what are you? Who are you? Is it possible I’m staying sick because I feel safer having an amazing Lyme community to belong to than not? (I want to point out that those who keep the Chronic Illness Warrior or Survivor identity – consciously or unconsciously – do incredible work for the community and to them we owe a great debt of gratitude and respect. Part of me feels less than for healing and moving on, because I can’t measure up to their courage and perseverance! I am glad for their identities, service, and anyone who follows in their footsteps! Lyme needs advocates. That being said, I’ve also needed to carve a safe space for myself to not follow in their footsteps, without insult or injury; to not choose a path of Lyme advocacy without feeling like I've betrayed them.)
How is it that I don’t know who I am, or who I even want to be, without a diagnostic label? Is it possible the fear of the healthy Unknown feels like a greater threat to my survival than disease? Is my sympathetic nervous system revving up my legs for flight back to my Sick tribe, and shutting off the immune system that would heal me, but strip me of my tribal rites? Does my body feel safer being sick than it does being well, and free, and Unknown? Why? How?
Where’s the poop, Robin?
Catching the Scent
A few years ago, after a heavy-hitting Lyme-killing protocol from a new LLMD, I experienced severe insomnia, nighttime panic attacks, and social anxiety. Medications, even herbals, were only making them worse, so I needed to find a model of health in which I could self-treat safely; enter the concept of self-directed neuroplasticity. I began to learn about “rewiring the brain” and removing toxic thoughts using Dr. Caroline Leaf’s “21-Day Brain Detox” (now known as Neurocycle).
Then I realized that it could be useful for unwiring the stress I was under that I suspected allowed Lyme to wreak havoc when it did: I was a newlywed just repatriated to the US from Hungary, and was very much disoriented about my identity, dreams, abilities, relationships, and finances, facing much medical stress from crappy insurance and a switch to natural medicine, and working a demeaning job I hated. Then my husband lost his job, we had to move out of the state. Stressful life changes are very often a trigger you will hear Chronic Lyme patients report concerning what was happening just before they were diagnosed. Stress suppresses the immune system. It’s a pretty common part of a Lyme journey. I thought that was the simple “poop” behind my chronic illness, and many people accept that as theirs: the stressful situation I was in or just coming out of when Lyme hit. (The first tough question is: will I learn to process and remedy that stress, or do I seek healing just so I can go back to the same overwhelmed lifestyle? When does “getting my life back” simply mean getting my stress and susceptibility to illness back?) I started using Neurocycle to break down my frequent mood swings and anxieties, trying to forge the whole thought-life change necessary to manage that stress and prevent relapse or further illness. I started sleeping a few more hours a week, but was still running high on anxiety.
Where’s the poop, Robin?
Well, I also learned about the role diet can play in inflammation, mood disorders, and feeding spirochetes (and candida), particularly gluten, dairy, and sugar, so I cut them out of my diet. It took a good 1-2 years of adjustment and elimination, but eventually my “food-and-mood” diary revealed very clear correlations between dairy and corn consumption and massive mood swings. It was like someone flipped the Bitch Switch. As heart-broken as I was to give up cheese, and then pretty much any food sold in a grocery store (all with corn-derived additives), I was quite thrilled to have a stable mood for the first time, like, EVER in my life.
But the more I learned about processed food, GMO’s, soil depletion, aflatoxin, fumonisin, feed lots, Omega-6’s, leaky gut, MUFAs, PUFAs, and STFU-fas, I realized that food in America is just… not good. It’s practically poison. There are studies linking pretty much every disease ever to dietary toxicity and inflammation. And until recently, I’d been eating it all my life. With important immunity I should have gained at birth lacking due to being delivered C-section and formula-fed, being prescribed antibiotics twelve times by age five, with no probiotics, and eating 90% of my diet from highly inflammatory corn, wheat, dairy, soy, and sugar, I had no chance in hell of having an immune system or an uninflamed brain. I was eating the poop, Robin!
The good news is, the human body is quite resilient, and by switching to whole foods, ditching the antibiotics, healing the gut, and supplementing with nutrients, I lost 45 pounds (with no exercise regimen), healed from MCAS, got off allergy meds, thyroid meds, hormone meds, and got normal periods for the first time in my life. But I still had severe insomnia, panic attacks, fatigue, and worsening brain fog.
Where’s the poop, Robin?
After a royal failure of two years on antibiotics (I was psychotic and my gut was destroyed), Chinese Medicine worked wonders for my physical symptoms. But when my “brain fog” became relentless, debilitating, and would not respond to treatment, I dug deeper. In my neuroscience research, I further learned that the mind can control the brain and body, including chronic pain and symptoms, via the nervous system, electrical signals, and possibly unresolved trauma getting “stuck” in the body (incomplete “fight-or-flight” de-escalation). (See: Peter Levine, Bessel Van der Kolk, Gabor Maté, “somatic experiencing,” “compassionate inquiry.”)
I dedicated myself to a more intense daily practice of mental work, for about 6 months writing and meditating sometimes hours a day. (The “fog” at this point was like an inability to focus my eyes, or mind, on anything outside my head and emotions, or multi-tasking. The cognitive impairment “fog” of acute Lyme, when I couldn’t read or speak or understand words, had largely been overcome with pathogen treatment.)
Finally one day I discovered a word-for-word description of what I was experiencing non-stop for three years: C-PTSD Dissociation, Complex Post-Traumatic Stress Disorder Dissociation. The “brain fog,” which has many, many manifestations and causes across chronic illness, in my case did not seem to be the heavy metal accumulation, ammonia, poor diet, parasites, brain damage, or other commonly-explored medical explanations, but rather a trauma response. As opposed to PTSD, in which a singular trauma occurs and then triggers into “flashbacks,” Complex PTSD occurs when the trauma is ongoing and inescapable. There is no flash back to a memory of past trauma, the trauma never ended. It’s still happening, such as occurs in domestic abuse, or chronic illness. If this was my true diagnosis, it meant my dear sweet brain became completely overwhelmed with an inescapable situation and shut down, or quarantined, a part of my neural network to allow me to survive. It’s often called “derealization/depersonalization.” My brain fogged up, on purpose, to dull a reality that was too painful to live with, allowing me to function, without the stress of the traumatic details. Sort of a useful amnesia to the present moment.
There’s another option for the sympathetic nervous system in survival mode: fight, flight, or freeze. Play dead like a possum. And part of my brain did. My life did not feel real. My vision was unfocused, my mind spacey. My memories felt like a movie I had seen sometime, but not my life, not connected with any emotion. I couldn’t feel emotions (except fear, grief, and anger) deeply, I could barely feel my skin - I could feel my body physically, but there was no deeper reality or emotion to being touched than the feeling of my finger swiping across my phone. I had a lot of neuropathy and numbness. The diagnosis of “peripheral neuropathy” and permanent nerve damage terrified me. But was it really all part of dissociating my body from trauma?
I eagerly accepted C-PTSD, with much resonating relief, curiosity, and hope, because I find the brain much more self-curable than terrifying biomechanical diagnoses that require appointments with rude doctors and their drugs. You mean I don't need a $10,000 heavy metal chelation protocol that may or may not deposit aluminum in my organs anyway to solve my brain fog?! I'm there! I had already learned that chronic illness is traumatic, in so many ways – medically, physically, relationally, with endless grief of endless losses. It is indeed a complex trauma – inescapable, and ongoing, possibly for life. I heard Annie Hopper’s story, accepting that the body and mind can get “stuck” physiologically in an illness reaction even when pathogens are gone. It was helpful to some degree to teach my mind to think more positively about past, present, and future, practice daily gratitude and reflection, reassure myself that healing is possible, to celebrate small victories, take things less personally, and open my mind to new paradigms of health and safety. It felt better… but it did not clear my brain fog, or cure my illness. Embracing hope for healing Lyme and envisioning the end of the trauma was not enough to convince my brain it was over.
Where’s the poop, Robin?
Well, when I started studying C-PTSD and psychoneuroimmunology, playing with some somatic experiencing exercises, trauma work, and staring my brain right in the anterior cingulate cortex, I had to admit that the C-PTSD did not start with Lyme... or even moving 5,000 miles and losing my entire sense of self. There was a stressor that was still too painful to look at closely, a deep and vengeful anger that I refused to explore lest I dissolve into rage.
I'm not trying to be slick with cliff-hangers, but until the novel is published, this is getting too long for a blog... continue to Part 3.