Escaping Autoimmune Hell with Helminthic & Microbiome Immune Support
Complete Health Break Down
In 2008, I got sick. Frighteningly sick. I had excruciating head pain that was unlike anything I'd ever experienced. I went to the hospital; they told me I'd had a stroke. At 36. Months later they decided that it wasn't a stroke, just extreme migraine pain, but that diagnosis didn't explain my greater health crisis. Month after month, I was in unrelenting, blinding pain. I was so exhausted I could barely move. This was a full-blown, shutting-down-my-life health crisis.
The Usual Round of Doctors
Three day migraines hit me 8-10 times per month. Nausea often made it impossible to eat. I was so exhausted I could barely move from the bed to lie on the couch all day. Some days I couldn't eat meals because I was too tired to chew. Too tired to chew. People think I'm exaggerating when I say that. I'm not. Then there was the constant deep body pain to top it all off. Of course, when you only have enough energy to brush your hair OR your teeth on any given day, the idea of normal work is ludicrous.
I spent years trying to get help. I saw a number of specialists. They offered me the usual pharma solutions. Triptans, beta-blockers, botox, anti-seizure medications. You name, it I tried it. The migraines continued unabated.
None of the MDs I went to, including the specialists, even attempted to treat the debilitating fatigue that destroyed even my rare non-migraine days. Instead, they fixated on the migraines and said we'd work on the fatigue problem after the migraines were under control, which never happened. Then there were the inevitable suggestions of various anti-depressants. After a year or so of unrelenting misery, I caved in and tried several different ones over a number of months. My fatigue and migraines didn't improve. I felt like a zombie for months and gained 30 pounds despite constant nausea from the migraines and barely being able to eat.
None of the docs ever gave me a diagnosis beyond migraine, but I easily fulfilled the diagnostic criteria for Chronic Fatigue/Myalgic Encephalomyelitis (CFS/ME). I didn't push for a diagnosis. I knew it wouldn't mean much without a useful treatment and could get me labelled as "one of THOSE people". I stopped going to doctors for any of the symptoms that were making my life a nightmare. They didn't have the tools or knowledge to help with these problems.
Years of Diets and Protocols
Having no luck with the standard medical route, I looked further afield. I tried a number of dietary interventions for months at a time with the sort of hard core compliance that can only be fueled by desperation. Wahls Protocol Paleo was a great place to start. I started rebuilding my microbiome and it helped some with my symptoms but not enough on its own. The Low Histamine diet didn't help. The Low FODMAP diet exposed some problem food sensitivities that are useful to know about, but ultimately did little to help my overall situation. The Autoimmune Protocol with a Wahls-style emphasis on nutrient density coupled with what I learned about my FODMAP sensitivities, made the most difference for me and continued to improve my gut health, but wasn't enough to consistently keep me on my feet.
I had my genome sequenced at 23 and Me. That testing revealed some MTHFR genetic predispositions to methylation cycle dysfunction. I tried a couple of methylation protocols and found one that helped, but again, not enough on its own or in conjunction with my now Low FODMAP Autoimmune Protocol diet, to get me functioning well.
Each time I tried something new, I hope it would be The Thing That Fixed Me. Often a new intervention would help for a few weeks, even three months, but then I'd drift backwards, sometime with lasting, but relatively small improvements.
Seven years in, my joints started to hurt. I suspected rheumatoid arthritis was settling in along with the constant migraines and debilitating fatigue. Things were bad and I was staring into a future where another autoimmune disease was going to compound all my problems. I was terrified.
Friends with Benefits
Wandering around Facebook one day, I ran across the article that would change my life. The lady in the article, Lyn Jolly, had lupus and with help from an unusual source, helminths aka specially selected tiny worms that live in your gut, she was able to get her life back. Most of the Facebook comments were variations on "eww, yuck!", but I was years beyond any ick factor stopping me from a potentially life changing therapy.
I went into research overdrive, as much as I could with extreme brain fog, debilitating exhaustion and pain. I read the book that was mentioned in the article, An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases by Moises Velasquez-Manoff. The science was compelling and I knew I had to try helminth therapy. The potential reward was high, the risks were low, if I ran into trouble, I could terminate the experiment with OTC medications, and it only took US$200 to get them shipped to me in New Zealand.
I joined the Helminth Therapy Support group on Facebook and read the extensive collection of files with data and advice collected from years of peoples' self-experiments. I read peer-reviewed scientific papers. Once I decided on a dose appropriate for my problems, I ordered off for it and within two weeks from first learning about the helminth immune support, I had my very own micro colony of immunomodulating hookworms, Necator americanus.
A New Hope
Getting started with my first dose was simple. I put a few drops of clear liquid on a band-aid, then stuck the band-aid on my leg. After a few minutes there was a prickly itch that let me know the dose was viable. Half an hour later, the itch was over. A small rash appeared a couple of days later.
But not for long.
In the second week, I had a "bounce". My symptoms improved, my years' long anxiety lifted and I had a new sense of optimism. The bounce only lasted a few days, but it was glorious. I returned to baseline, but new improvements appeared as the weeks passed. The worst side effects I had were increased wind and a few weeks of vague gastrointestinal unease.
By the fifth week, the brain fog I'd had for years all but disappeared. My joint pain and plantar fasciitis did too. At week ten, I had a step change in energy. Suddenly, I had several hours of useful energy most days and was staying up later. I was able to clean the house, cook food and I started contemplating tackling the garden. My migraines became less frequent, less intense and of shorter duration.
I added another small dose at twelve weeks. Improvements continued. I felt better than I had since I got sick. At twenty four weeks, I added a third dose.
Seven months in
As I write this, it is a week short of seven months since I started helminth immune support. I started my day with tandem kayaking. After that, I came home, fed and watered the chickens, collected eggs, cooked a hot breakfast, tidied up the kitchen, washed and hung out laundry, attended to some gardening duties and spent several hours designing this new site and writing this page. I'm no longer too tired to chew.
Things aren't perfect. A person with normal energy can easily work me into the ground. I still have migraines, although they occur less frequently and with lower intensity. I'm carrying the extra 30 pounds packed on by the migraine meds and I wasn't bird-like even before that. I often crash out for hours in the afternoon. Currently, I fare best when I keep up my nutrient dense Low FODMAP Autoimmune Protocol diet and continue to support methylation. But I have an increasingly useful life and look forward to years of continued improvement. I'm not terrified. My worms and I, the Colony of Me, have got this.