Last month, in January 2021, five years after I got sick, I had this conversation with my dad;
Dad: “I wasn’t always sure you were going to make it, if I’m being honest.”
Me: “Yeah, I wasn’t sure either. But the fact that we are looking back on it means that I finally feel like I’ve crossed some threshold of stability. I’m not in constant survival mode anymore.”
The challenge is absolutely Herculean. Only by going through it or loving someone who is going through it can you truly understand what it means to get sick in such a way that all available housing becomes off-limits. Survival becomes a full time job until you can successfully hack the situation.
“Hacking the Situation” means you keep testing until you understand the mechanisms that are malfunctioning in your body and in your environment so you can work with them. Is it a poisoning? Contamination? Is it infection? Inflammation? Blood sugar issues? Mitochondrial dysfunction, Impaired Detoxification? All of the above?
“Testing” means actually lab testing, plus tweaking your environment, your food and your supplements, to see what changes. Most of the testing is against your will in the beginning. You get so sick that you are frantically trying not to get worse, but things keep kicking your ass. Everyone has to figure out the hard way because you can’t comprehend that it could possibly be this hard.
Environmental Illness is cruel this way: Every single person has to figure out the “fingerprint” of their unique genetic response to their unique environmental insults. There’s no single person or place to go to get all the answers you need. You have to hack the situation. It’s a hero’s journey.
This might not be true even in 5 years from now. There is now, in February 2021, one single test that can identify your epigenetic changes. This test isn’t identifying your genetic weaknesses or predispositions, this is identifying the genes that are ACTUALLY altering your metabolism, immune system and detoxification right now. It’s not foolproof, but wow, it’s impressive.
Despite the individual nature of healing, there are “themes” that have helped other people succeed, and you can adopt those themes to increase your understanding of your own problem, in order to hack it.
I’m going to write about the breakthroughs that I have had on my healing path so far to illustrate this point. Each of these may or may not work for you. (This list doesn’t include to 100 other things I tried that didn’t seem to work.) Even with 20/20 hindsight, I can see that some of these solutions had to wait for me to mature spiritually or psychoemotionally in order to get the lesson. There are windows of opportunity that open and close. The suffering and physical pain have been my teachers and I have learned to no longer judge pain as “bad” and comfort as “good.”
- Adrenals– In many cases, the initiating illness in CIRS will be a virus, and this was true for me. I got a viral UTI (I didn’t know that was a thing.) I went on Valcyclovir and that helped. But the day the virus went from making my kidneys hurt to attacking my adrenal glands (on top of the kidneys) was the day I almost collapsed at work. This was the “Date of Onset,” December 22, 2015. I had had destabilized health since 2002, but this was the date I became bedridden.
I figured out quickly that it was my adrenals because of the symptoms and by January 2016, I was on the Dr. Lam program. His books described my symptoms and progression to a T and their approach of diluting glutathione and other nutrients in bottles of water and sipping slowly all day was exactly what was needed. I was working with a naturopath at the time whose advice crashed me no fewer than 6 times. So this was hacking the first layer: the discernment to know who to listen to, what to work on and how gently to proceed.
- Mold– In February 2016, I was lying in bed, miserable, wondering what the hell to do next when I listened to the podcast where Chris Kresser interviewed Dr Ritchie Shoemaker. In retrospect, this was the moment that saved my life, and I could feel that at the time. This was the moment I understood that the mechanism was poisoning. I was being poisoned by my environment and if I wanted to live, I had to find it within myself to get up and run for my life, while sick. Many people reading this blog will relate to this. The Shoemaker Protocol was a MAJOR BREAKTHROUGH. My acupuncturist made house calls and scraped me off the floor so I could begin to implement it.
My friend Jen, who had given me shelter 6 years earlier when I got divorced, let me stay in her guest room til I figured out what to do. It was the first move in 4 years of homelessness because every subsequent environment I went to made me sick. I lost every single item I owned. Every last thing. In the imperative to out run mold, I had to give away my stuff and buy new stuff several times. I got so clear of it that now I can feel where it is. My friend from Vermont just sent me a Christmas card and I could feel the mold on the paper. I know. That’s crazy, next-level sh*t. But now that my whole life is designed to avoid mold, I am finally healing.
- Intracellular Bugs– Several times during my odyssey of healing, I had setbacks from getting infections that could not be identified. They went away with antibiotics, then sometimes they came roaring back. I had 6 antibiotics failures in a row in 2019. I got soooo sick, I had to figure out a whole new layer of the onion, even though I didn’t have the inclination or the money. (You get so tired of constantly panicking from this or that threat to your survival that it sort of becomes routine and you become really OK with the possibility of your own death. This is actually a wonderful freedom and helps you be fearless and find creative solutions.)
In this case, I found out how to send my blood to Germany for T-cell testing (because intracellular bugs sabotage your ability to make measurable antibodies) and then I found the Buhner Protocol. The Buhner Protocol is a way to rely on herbal antibiotics to make your body less hospitable for stealth pathogens like the Lyme spirochete, the Babesia Parasite or other tick-borne co-infections like Bartonella and viruses. It worked for me ( I found out which 3 tick-borne bacteria I had) but I couldn’t afford it at $400 a month for just “not getting worse.” When the government send the $1200 stimulus check in spring of 2020, I spent the whole thing on creating my own tincture Apothecary. I buy dry herbs now by the pound and pop them into vodka and was able to double my dose and make progress. (Thanks Covid.)
- Advaita– There’s a tremendous spiritual opportunity in having new-paradigm illnesses. I found that I needed to become a student of consciousness in order to not be driven mad by my own mind. I hadn’t wanted to leave my life in Maine. My son, my house, my boyfriend, my dance group. I was being driven mental, trying to make it all un-happen. I was creating hell for myself.
Life became painful enough that I was hungry for a solution and the pain became a gift. It made me hack my mind. I became aware of the nature of thoughts in a way that allowed me to take them less seriously. Not identifying with the drama as much, I caught a glimpse of the moment-of-choice — where I can go down that path of getting upset, or go down this path of equanimity and solutions. I can’t un-see that choice now. This is like doing the Gupta Program or DNRS. It’s an unrelenting, moment-by-moment brain retraining that dissolves the mind. A conscious refusal to engage in certain mental patterns instantly cancels a certain amount of physical pain, and the feedback loop that connects them.
I had been a Buddhist since my adolescence, but my new high-desert environment came with a community of practitioners of “Advaita Vedanta,” which is like a bunch of super bad-ass Buddhists who have hacked Awakening. A fun group.
- Ayahuasca– Although the overall trajectory of the last 5 years has been one of healing, the setbacks have been numerous and constant. During one such setback, the “doing everything right all the time” approach was still not working and my feeling was, “Cure me or Kill me.” I was ready to surrender totally and completely. Just take it.
Meanwhile, there’s always something new to try. So I signed up for an Ayahuasca ceremony. I figure this illness finally opened my mind to herbal medicine with the Buhner Protocol and I was grateful for that. Unfortunately, the ceremony was in a moldy building and I got really sick. And then I got really well.
I had a brief journey, quite sweet, that was a narrative about the origins the illness starting while in utero. And then I was in hell, and then I threw up. After that I felt better than I had ever felt in my life — for 3 days. I have no idea what happened, but it feels like I was permanently freed of something foreign to my body. It didn’t cure me, but it was another layer gone. Afterwords, the antibiotic tinctures started working much better for some reason. Who knows why.
- Mast Cell Activation– Three months ago, I randomly started taking a second antihistamine. (I try one or two new things a month to jostle the system to see if anything changes. You make a commitment to both consistency and innovation.) So that was one of my efforts– I took a second antihistamine. I had been on Xyzal for 2 years for mast cell activation at Dr Ackerley’s recommendation. But I never felt that different from it. But when I added this tiny little pill, I suddenly had what seemed like a different body. I slept 8 straight hours without even waking up to pee. And every night for 2 months!! That hadn’t happened since I was a kid! I felt refreshed and awake first thing– which never happens. (Ask my bff Tina.) It was a Eureka moment and definitely qualifies for breakthrough status. Learn more about it here.
The effect didn’t last, as they often don’t. But it was an awesome clue as to what the mechanism of dysfunction is. The feeling of internal tremor that is the sensation that will make me run screaming from a moldy building is none other than all my wee mast cells activating. It’s what makes my face flushed all the time. It’s the reaction to my bedding that makes me feel like I just drank an espresso as I lay down and try to relax. It’s the reason I have to eat a simple diet (no grains, no leftovers.)
Mast cells are connected with the Vagus nerve and they exist where the nervous system and the immune system meet. Often in these illnesses, there is a central nervous system dysregulation that impairs the body’s ability to calm down. There is literally an inflammation of the nervous system, including the mast cells, that disables the parasympathetic action (the thing that lets you calm down or fall asleep.)
If you have ever lost your ability to fall asleep, you have learned how hard it is to heal. Your body can’t heal without sleeping. I can’t sleep in or near a town, still. I have to drug myself to sleep. So I have to go up to the wilderness part of every week so that I can get caught up on sleep and detox. My mast cells are not activated in a very clean situation.
Sometimes solutions have drawbacks, however. Taking antihistamines can have a deleterious effect on your brain. They are considered to be “dementogens” because they impair new neuronal growth. So… I’m constantly working on my next breakthrough. In an effort to hack this situation, I’m focusing on breakthroughs that will bio-hack the brain and be an antidote to all the anti-cholinergic supports I have in my routine.
I keep a wilderness baseline and I’m experimenting with peptides and a low-histamine diet and plasmalogens. More testing is necessary but so far something is working.
Even though this path is hard, it’s important to note that the difficulty is ultimately a gift. The process has actually eroded the mental and emotional structures that have obscured the beauty and joy in each present moment and I now have a capacity for joy and equanimity that was not available to me before. That is the point of the hero’s journey.
There are treasures at the bottom of that darkness!