Screaming in Silent Solitude
By Andrea, Lyme patient
I have been asked to write a short story about my Lyme journey for Lyme Awareness Month. I am not a writer by any means and find the task a little daunting but I knew I needed to tell my story and support the Australian Lyme community. My acceptance came with its perils. I would need to read the diaries I kept during my illness. I would need to revisit the just legible scrawl of a person in pain, a person stripped of her life, a person without hope. It was the first time since my recovery that I have had to confront what happened to me. The process has not been without some tears. Here is my story…
I lived in the Gold Coast hinterland near Lamington National Park. I’ve had hundreds of tick and leech bites in every place you can imagine including my eyes and private parts. The first signs that something was wrong were small itchy spots, aching teeth and sore gums. Three different dentists picked three different teeth as being the source of my pain. I ended up at a TMJ Specialist and was given a mouthguard to make space in my jaw, as the muscles in my face were tight. Then I was misdiagnosed with Trigeminal Neuralgia, Shingles (twice) and MS. I also had a miscarriage. My health deteriorated rapidly in Oct 2015, when the neurological pain in my jaw spread to other parts of my body and a range of inexplicable symptoms quickly took me down.
It was a struggle to think, see, hear, eat, walk, talk, breathe or be touched. I had excruciating neurological pain in my brain, body and internal organs. Waves of an intolerable burning sensation migrated randomly over my upper body and face. I could feel pain in my organs, moving from place to place, connecting together. I had to wear earplugs and noise cancelling headphones to shut out the stress of everyday sounds. I wore dark glasses and a sarong over my head to cut out the light.
I struggled to go to the toilet as my normal bodily functions stopped working. I had no thermal regulation and seesawed between chills and sweats, but I didn’t perspire. A test showed that my black mould level was off the chart, yet tests showed our house was not the source.
It felt like many litres of blood were drawn for the numerous tests I underwent, but they generally showed little to indicate anything was wrong. In the early stages we called the ambulance three times, two of which resulted in visits to the Emergency Room. The dismissive attitude I received in response to my symptoms and pain was infuriating. One neurologist, when my partner suggested Lyme be considered, scoffed “If you had Lyme, I’d be writing a paper on you and be famous”. On another occasion, after waiting a long time to be attended to, a nurse disclosed that the paramedics had noted their suspicion that I was a pain killer addict, mentally unstable, and therefore a low priority in the ER.
I had developed a healthy distrust of the medical profession and chose to battle on as best I could. To reduce inflammation I went gluten, dairy, caffeine, alcohol and sugar free. I took countless herbal supplements, tinctures, concoctions, tablets, and I purchased ozone and rife machines. Nothing was helping. Over two and a half years, the financial burden this placed on us was probably in the hundreds of thousands, including my partners lost income, as he became my full-time carer.
My life became unbearable. I spent three years in a dark room; bed bound, waiting for the next pain wave. I knew I was dying and had given up hope. In mid 2018, my partner decided to take me to Klinik St Georg, a clinic in Germany that specialises in Lyme treatment. By this time I weighed 40kg and was too weak to walk. My muscles were wasting away and I could hardly hold my head up. For the journey to Germany, special arrangements had to be made due to my condition, including Fit to Fly Certificates and wheelchairs at each transit point. It was my last chance. I didn’t think I’d survive much longer. In fact, I didn’t think I would be coming home.
On arrival at the clinic I was so weak I couldn’t look up at the doctors, so they delayed my treatment until they built up my strength. I only knew them by their shoes. I won’t go into all the different treatments I received at the clinic in this story but the main ones were intraveous antibiotics while undergoing full body hyperthermia treatments. This is where your body temperature is raised to around 42 degrees, for six hours while under sedation. The theory is that Borrelia cannot survive at this temperature and has nowhere to hide. The heat also allows the antibiotics to pass through the blood brain barrier. There is no doubt this treatment saved my life. Even though I experienced bad herxing for a day or two, the fog and pain I had lived with for three years was lifting. I was me again.
Another treatment I had was Apheresis, where quantities of blood are removed, separated, filtered and returned to the body. I was shocked at the amount of gunk that was removed during filtration. Borrelia can be transmitted sexually, so my partner undertook the Partner Treatment, even though he was asymptomatic.
By the end of my three-week stay, I was walking, talking, eating well, laughing and optimistic. I was finally able to see the doctors that treated me and put faces to the shoes. They advised that the treatment was for Borrelia only and did not treat the co-infections, which may flare up and require management.
I arrived in a wheelchair and within a week of discharge I was doing a 42km bike ride in The Netherlands! I was ravenous and ate my way through Europe for the next three months. To me, the fact that my condition improved significantly after having specialised treatment for Borrelia, confirms I had Borrelia! Not MS, not Trigeminal Neuralgia, not Fibromyalgia, not ME/CFS, not shingles, nor am I crazy!
At the very beginning of this illness, my partner was doing lots of research and was keen to share his discoveries with me. In my foggy, pain riddled state, I couldn’t cope with the details of what was happening to me and asked him to tell me as little as possible. I didn’t want to know about spirochetes and biofilms. It was too much. I was living it! It wasn’t until after our return from Germany that I was able to start reading and educate myself about this insidious disease and what it had done to me.
Borrelia took its toll on my body and mind. Soon after returning from the clinic, I had eight very loose teeth removed. We have spent the four years since my treatment in Germany living in self-imposed isolation, rarely venturing out, disillusioned with the world that left me to die. Little things can trigger bad memories and panic attacks. When the co-infections resurface, I can be down for days. The rashes and the blood pooling under my skin warn me that a flare is coming, my ears scream louder and I get dizzy, nauseated and sick. I still have some occasional neurological pain, but nothing like before. At times, when all the symptoms coalesce, I succumb to the fear and panic and revisit the terrified girl hiding inside me. These bouts are short-lived and relatively mild compared to the nightmare I was previously living.
Now I live day to day, each one being a gift. One second, one minute, one hour at a time. I think it’s the only way you can mentally survive Lyme disease.
I AM GRATEFUL that I am still alive. Grateful for my partner for being there every step of the way. Grateful for the few friends who stayed and held my hand.
I AM ANGRY at our medical system for abandoning, ignoring and belittling us. Angry at the Government for denying our human rights. Angry at the friends and family that ghosted us.
I was misled, misdiagnosed, mistreated, belittled and left to die.
I AM STILL HERE, DEFIANT.
Above: Diary excerpt