Testing the bacterial hypothesis

Novel therapy in Europe appears to be both safer and more accurate, but it isn't well researched

Is it plausible that I could have “Lyme” and co-infections? Yes. I live in a tick-ridden landscape, I like hiking in forests and grasslands, and yes — I’ve had my fair share of tick and horsefly bites.

It doesn’t explain the sudden onset of symptoms following my withdrawal in December 2020. But could the medication have either masked or exaggerated some Lyme symptoms? A stretch, but I can’t rule it out.

Lyme disease can cause tinnitus, photophobia (light sensitivity), and visual contrast sensitivity impairment to such an extent that it causes panic. There’s a log list of potential mental health symptoms. Microbes that clog up the nerves can also cause tingling in the limbs and head. This all sounds very familiar. And there’s more.

Some professionals and sufferers alike believe that psychotropic medications expose the brain to a highly toxic “biofilm” by harming the blood-brain barrier. The biofilm is comprised of heavy metals, viruses, bacteria, mold, yeast, and other microorganisms. Some biofilm compositions can be good for us, but they can also carry things that lead to chronic illness. I had previously dismissed this theory as a bit “woo woo,” but there’s no harm in thinking it through and testing it, in the spirit of being my own experiment.

What’s less clear is how many of these symptoms I may have had throughout the year(s) leading up to the moment of revelation. When I tried to get off the drug before, some symptoms would present very suddenly. Without adequate support or advice back then, I just stayed the course. Sadly, that strategy likely did more harm than good.

Support in Switzerland

Over the last few months, I found myself hitting dead ends of a different kind. Big, bad dead ends. I wasn’t getting anywhere with health and healing, and I was confronting a life of disability, intense discomfort, and wasted opportunity. I’d been exhausting my family and struggling to maintain focus at work. I became virtually immobile and struggled to take care of daily tasks. Positive thinking seemed to be doing more harm than good when results wouldn’t come.

I started to let family and friends — all the people who had been close to me throughout my life — know that I was putting my affairs in order and applying for an assisted death. I felt I was being realistic, not dramatic, given the lack of progress. I can look and sound “normal,” but feel like I’m being assaulted from the outside and eaten alive on the inside all at the same time. With daily symptoms still at alarming levels, it remains a serious option if things can’t shift.

Friends rallied. One came to Winnipeg all the way from Switzerland and insisted that I could still heal. Another couple came from Vancouver. These were profound gestures of love. They told me I needed more time, more support, and more options.

My Swiss friend set up a range of social supports and put just enough pressure on me to give me another shot. But with all the perceptual errors, there was no way I could travel. My body would just shut down. So I tried something new, radical, and expensive: an rTMS treatment (see next post). Repetitive transcranial magnetic stimulation had the effect of waking up my prefrontal cortex enough for me to reclaim my will and attention. If I can’t see, hear, or feel the world properly, I thought, at least I can think my way through the funhouse.

And it worked. I made it to the other side of the ocean. rTMS was one of the minor miracles I needed to keep going. Now, I’m fortunate to try new things in a whole new context.

I had coffee with one of my new Swiss friends yesterday who confided in me that he spent ten years almost obsessively searching for relief from a chronic condition. I’ve seen and heard this from many people who suffer from painful symptoms. To keep working feels (and sometimes looks) insane, but to stop feels like giving up.

The searching, my friend said, “was an expression of the desire to live.” I’ve been feeling sheepish and obsessive in my own search for relief, but simply waiting was getting me nowhere. He encouraged me to keep searching. To keep reaching for life.

And so, regardless of the likelihood, I’m now working with a clinic in Germany that deals with these bacterial infections.

A safer, more promising way to treat infections?

Unlike the broad-spectrum antibiotic treatment, SOT treatment (supportive oligonucleotide therapy) uses specific genetic messages in the DNA of pathogens to block the genes that Lyme, co-infections, or viruses need to survive and replicate. The test and treatment is more popular in the US and Europe than it is in Canada. Back home, standard tests tend to produce a lot of false negatives.

The SOT creates a shutoff “key” that precisely fits a chosen pathogen “lock.” It fights the infection for 3-6 months and it seems to be a more successful approach overall, with higher rates of symptom improvement. It isn’t really that well-researched in terms of effectiveness, but there are a handful of studies that validate this approach. And positive stories like this one.

Because of its precision technique, it would require a positive test for the range of infections that someone like me supposedly has. Then it would require the synthesis of a custom treatment from my own blood.

The test will arrive in a few days. I’ll head to a clinic in Switzerland, draw blood, and send it back to Germany. If positive, a lab will create a custom IV cocktail and then I’ll head to Germany to do the infusion.

I’m not holding my breath on this. And, like everything else, it’s unbearably expensive. But imagining relief is such a great feeling that I can’t help but pray for another miracle.

[Update: The test results came back negative for mould and lyme. So we’re back on the TBI (traumatic brain in jury) investigation train…]