I’ve often imagined my illness as a huge imposing monster around whom I need to tiptoe for fear of incurring his wrath and consequences. Well…….
It turns out I am dealing with a monster, only it’s microscopic and has a name: Borrelia Burgdoferi, the pathogen which causes Lyme Disease. The chances are I picked it up by being bitten on a hill walk in 2006 and it has been making itself comfortable in my brain and nervous system ever since.
Upon diagnosis, I was elated, almost euphoric. I had an answer to my medical puzzle which made sense: I’m harbouring a bug known to evade, suppress and manipulate the immune system, wreaking absolute havoc as it mutates into various forms: spirochetes, cysts, biofilms and so on. Little wonder I can’t get well. But there’s treatment so let’s get after these bugs!
Then the reality set in. As I read more about Lyme, I found myself through the looking glass, behind the wardrobe and down the rabbit hole staring into a pit of confusion, politics and multiple scare stories. Let’s start with something rather fundamental. It is a matter of controversy to say you have chronic Lyme Disease; apparently it doesn’t exist within mainstream medicine. Caught in its acute stage antibiotics will be administered. Left untreated for 12 years, the options are decidedly limited. Indeed, my German lab results will not be accepted by the NHS.
So, armed with lots of information gleaned from various Lyme forums and websites, and advice from my independent doctor, I decided on a course of treatment involving antimicrobial herbs. Any lingering hope that I’d had a ‘false positive’ result evaporated very quickly. At even the minutest dose of two herbs I suffered a reaction which truly defines the word ‘intolerable’. Every symptom was cranked up fiercely, I collected a bunch of new and very scary sensations and my every waking hour (and that was most of them as I couldn’t sleep) was accompanied by a pronounced feeling of being in mortal peril. It was truly hellish. After persevering for 3 weeks, I finally gave in and called in the cavalry in the form of my doctor and psychotherapist.
It’s difficult to convey adequately the fear of being trapped with an infection which renders my life an existence but where the mildest of treatment is infinitely worse. This is truly one of these illnesses where you need to experience the full gamut of its effects to have any notion of how it feels. I’m not ashamed to say that, even after 12 years of this, I was in absolute despair: the suffering was so profound. And, from everything I had read, there was no happy ending.
Around 3 weeks after the first attempt at treatment, and working hard at it, I returned to my ‘normal’ state–very debilitated but not living in a constant state of extreme sympathetic nervous system activation. Time to try again! This time, on advice, I changed the treatment to a form of herbal tea, starting with very low doses and increasing gradually. It took a couple of weeks but again I hit the intolerable wall. This time, I stopped quickly, rested and have re-started, at a glacial pace, with even more dilute and tiny doses. Whether this will work or I’m doing no more than tickling these bugs I don’t know!
I know that the reaction I’m having is well documented as a Herxheimer reaction and there are various schools of thought about coping with it. I prefer the view that suggests it’s a clear sign your body isn’t coping with the rate of die-off and that stepping back to a level where the sensations are tolerable is the way to go.
It’s all very much a work in progress and I view the antimicrobial tea is just another addition to all the other supplements, diet, psychological care and relaxation protocols I’ve been amassing over the years. For now, I’m in a ‘hope and acceptance’ phase, making the best of an unfortunate situation.
*With my grateful thanks to David Skidmore aka @Lymeloonies who kindly allowed me to include his wonderfully evocative cartoons.