Lyme disease left me feeling isolated and trapped, but I won't let it win

Photo: iStock
Photo: iStock Photo:

OPINION: Klinic St George, Germany. A place I had never heard of until recently. Yet here we are, about to make it our home for the next month.

Infections, co-infections, viruses, parasites, chronic, late stage, hyperthermia treatment, bad aibling – words that have become commonplace in our world.

This next step is a blessing and a curse, the light amidst years of darkness, it is terrifying, exciting and every other emotion humanly possible. It is an answer - finally - an answer to a question that I have been asking myself and anyone who was willing to listen for nearly half of my life; what is this 'invisible illness' that has stripped me of so many years of normalcy, capability, and joy?

The answer: Lyme Disease.

Now I have to put on my biggest pair of Lyme-killing big girl undies and take a massive leap of faith. I have been accepted into Klinic St George in Germany where I will be an inpatient for three weeks, undergoing intensive specialised hyperthermic treatments.

During the first two weeks I will undergo Whole Body Hyperthermia, where my whole body will be heated up to 41.6 degrees Celsius and injected with high dose antibiotics over a six-hour period, twice - under sedation of course! Following this I will undergo an accelerated detoxification and repair treatment to flush neurotoxins out of my body after the Lyme bacteria is killed.

On the third treatment week I will have Plasmapheresis which involves removing blood from the body, treating it, and returning components of blood plasma back and is recommended to help in the recovery process. After that, it's at least six weeks of recovery at home, where my immune system is reset without the Lyme.

How did I get here? I can remember, to the day, when it all changed 21 years ago. My life would never be the same again. I was in Spain, traveling with friends. An overwhelming exhaustion came over me like a cloud, then never fully lifted. I forced myself to soldier on with my holiday plans, while my body continued to resist.

I returned to the UK where I was greeted with the normalcy of my work life and daily obligations, but I continued to carry the burden of illness with me. Within three weeks, I was so unwell with a flu-like illness; fever, dizziness, fatigue and body aches, that I got a cab home that day and never returned to work.

My first mis-diagnosis was a doctor in the UK who well-meaningly sent me on my way with a prescription of 'eating more green vegetables'... and so began a long line of dumbfounded diagnosticians.

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After six weeks of consistent sickness I returned to Australia to be closer to the family support that I really needed. My doctor in Australia was seemingly the closest to diagnosing my current condition, but in the end didn't quite hit the nail on the head.

From here I was sent down the labelled pathway of Chronic Fatigue Syndrome (CFS). The symptoms appeared similar, but the root cause still mysterious. My Mum, who is most definitely a heroine in my story, slept by my side, as there were moments that I felt sure that I wouldn't survive the night.

Reuben and I had only been together for six months or so when all hell broke loose. He stayed in the UK when I returned to Australia, but after nine months of being apart, he decided that by my side was where he needed to be.

I set up camp on a bed in Mum and Dad's lounge during the day, where I made a slow but progressive climb into temporary remission over the next three years. The clouds lifted enough for us to move back to New Zealand after being away for five years, so we decided it was time to fill up his bucket with the strength of family.

I managed to secure a job with a New Zealand broadcaster in the sport department, it was my dream job. However, three months into it I had a flu injection, having no idea the tailspin it would send my immune system into. I was forced to return to Australia, feeling defeated by the sudden decline of my wellbeing. It took nearly three months, and a handful of weird and wonderful treatments to get me back to the mediocre but functional place that I sat in during those remissive periods.

Ironically, I was at my best health-wise whilst pregnant, I was the glowing pregnant mumma! Perhaps this was my body's way of surviving for the sake of my two beautiful boys growing inside me.

After a long period of wellbeing amidst the rigours of parenting young babies, I hit the wall again when my youngest was about 3. The wave of exhaustion overcame me, but I pushed through, seeking those moments of brightness on the other side. The moments of decline far outweighed the small glimmers of energy that would come, just long enough for me to come up for air, before going back down the rabbit hole again - all while desperately trying to maintain the daily needs of the house, my partner and growing children.

More doctors, more tests, full body scans, psychiatrists; we exhausted every possible avenue and left not a single stone unturned. But somehow, still nothing but guessing games, or half-hearted diagnoses based on a few surface symptoms. By then I had lost 20 kilos, and Mum set up camp at our home for the first of many trips across the ditch - leaving my supportive Dad to take care of himself. I was barely functioning on my own, and growing more frustrated by the second.

My symptoms continued to worsen by the day, so much so that I had to stop going into work, and instead work from home when I felt well enough. If I could manage to get up, shower, take the kids to school and tidy the house, it was a good day. Small daily tasks became mountains that needed to be climbed, and every day felt like an immeasurable length of time to carry my weary body through, all the while doctors claimed: 'There is nothing wrong with You!'.

There was a point where I realised that I couldn't even make any definitive plans in my life as I didn't know from day to day, moment to moment, if I would be well enough. School assemblies, sporting events, lunches with friends, date nights with Reuben all fell to the back burner, because it was just too much, too hard for me to anticipate how I would feel or where my body would be attacked. I was a walking land mine, with no warning of where I would be hit next. I was living, but not.

From the small daily pleasures to the monumental life moments, I was feeling it all slipping through my fingers. This disease was so isolating, forcing me to be trapped in my home, for fear that even stepping outside the door would be more than my body could handle. So there I stayed, as the days turned into weeks, turned into months, turned into years.

And then it happened…again. A second monumental episode would send me spiralling even deeper; fatigue, flu-like symptoms and now, something quite new. All of a sudden I couldn't remember anything, my brain was zapping, I was thrown into severe anxiety and panic took over.

I went to an endocrinologist and a psychiatrist who both saw only the immediate symptoms, so of course I was put on anti-anxiety medication - a band-aid fix because I know in my heart of hearts that this demon was not in my head! The psychiatrist agreed with me, he could see that my nervous system was being attacked by something in my body, but the priority in that moment was to steady it while we continued to search for answers.

In December 2017, just before the Christmas and school summer holidays, Reuben had to race me off to North Shore Hospital with a resting heart rate of 130 beats per minute. After several hours of monitoring I am diagnosed - again - with Generalized Anxiety Disorder. By now it is feeling like no doctor really has a clue what is the source of all of this, but it rather tapping into their own small specialised ares of expertise too diagnose a relevant symptom.

The symptoms are powerful enough on their own, but they are being driven by a root cause. It is anxiety, fibromyalgia, hormonal imbalance, low immune function, chronic fatigue…it is all of it, rolled into one monumentally mysterious and life-altering package. But the big question was still left unanswered: what in the world was doing this to me?

We were supposed to go to Bali that year as a family, but there was absolutely no way that I could even consider stepping onto an airplane, and into a third-world environment, when I couldn't even leave the house! Every system in my body was shattered, but quite specifically a blow to my immune system via travel or 'Bali-belly' could spell devastation. It didn't matter, I was too sick by then, I wouldn't have even been able to open a suitcase.

Mum and Dad came to the rescue once again, as did my tribe of besties who I lovingly refer to as the 'Yay Tribe'. Mum looked after me, cried with me, held my hair back, and took on the role of matriarch in my house, looking after Reuben and the boys. The girls brought Starbucks Chai, Poke bowls and Petal cupcakes (the only things I could stomach), endless amounts of cuddles, and somehow always managed to leave me in a fit of giggles at the darkest of times, for this I am so grateful.

It was time for me to take matters into my own hands. I knew that what I was feeling wasn't normal, hell I could barely function. I was sick and it wasn't in my head - it was in my body, attacking me in different ways, showing its ugly head in different forms every day. I wasn't willing to give up on finding an answer to this mysterious disease with wandering symptoms, and if the doctors weren't going to find it, then dammit I was!

I became an advocate for my own health, and hit the books, the internet and every resource I could exhaust…hard.

Then it happened; I found information from a Lyme Disease Specialist that linked severe depression and anxiety to Lyme.

Could it be? All these years of searching, could I have finally landed on the root cause of all of these debilitatingly mysterious symptoms? I started to put the pieces of this complicated puzzle together and to my surprise, it all matched - perfectly.

It is worth mentioning that over the course of this 21 year journey I have been diagnosed with everything from CFS to Fibromyalgia, to Adrenal Fatigue, to Low Thyroid, to Hashimoto's, to Hormonal Imbalance, to Peri-menopause, to Generalised Anxiety Disorder, to Depression, to Iodine Deficiency and of course, back to CFS again.

I immediately went about researching on my own how I could get a specific diagnosis for Lyme Disease. I discovered that there were front-running clinics in both the USA and Germany that seemed to having a handle on how to capture this bugger. I sent half of my body weight in blood out to both clinics, and held my breath for the answer. Then there it was, in my email inbox, the answer that I had searched for for over 20 years; I had Chronic Lyme Disease and several of its co-infections.

It was a breath of fresh air that I hadn't taken in 20 years, but at the same time it was like having the wind knocked out of me. I wanted to be relieved, happy even to finally have an answer, even though deep down I knew that Pandora's box was now wide open, and the journey ahead was about to be a long one.

My first question was, what the hell is Lyme Disease? Back to the research I went.  It is a multi-systemic illness, in other words it has the ability to wander through the body, attacking multiple systems, sometimes all at once. For me it affects many parts of my nervous, immune and endocrine systems causing fatigue, stiff neck, headaches, bells palsy, light and sound sensitivity, hearing loss, tinnitus (ringing in the ears), dizziness, joint and muscle pain, brain fog, memory and concentration problems, chest pain and heart palpitations and nervous system conditions like depression and anxiety.

With the help of a NZ-based Medicinal Herbalist and a US-based Lyme Disease Specialist I took the first big step forward and began treatment using herbal medication. I started the fight and the Lyme fought back - but I fought back even harder. It is a rollercoaster of good days and bad as the treatments attempt to kill the disease and the toxins make you feel sick - sometimes more sick than the Lyme itself.

I take three steps forward, and two steps back, but I am not giving up hope. F... you Lyme!

In the meantime, detoxing is the main part of my daily routine as I count down the minutes to the 'big game'; coffee enemas (I won't go into detail on this one), lemon water, epsom salt baths - basically anything I can do to keep my body clean and build the necessary strength that I will need in Germany to properly kick Lyme's ass.

In a few weeks Reuben and I board the plane for this next big adventure. We are experiencing the whole gamut of emotions right now; scared, nervous, excited and hopeful that once and for all we may be able to return after all is said and done to our home, our beautiful boys, our family, friends and a semblance of normalcy, and the opportunity for a clean slate and a fresh start at life.

*with help writing by Jennifer Allen

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