I was bitten by a nymphal tick, on the neighbouring Hebridean Isle to the one I’ve lived on since 2003 (there are few trees and no deer). It was July 23rd 2011 and I’d been camping with friends at a music festival.
I had no idea a rash is the first symptom. An ELISA test four weeks after the bite was negative. At the time, logic would dictate there was no reason for me to worry about Lyme disease.
Looking back, I remember odd things happening fairly soon after the bite. I recall the sensation of invisible insects crawling across my face and scalp. I imagined my pet cat was infested with tiny mites which had crawled onto me, but even after showering they were still there. I now know this to be ‘formication’, one of many potential Lyme disease symptoms.
Over the months that followed I had a series of unexplained nosebleeds, something I never suffered from. I began waking suddenly with frightening palpitations and ectopic heart beats. I had dizzy spells and faintness from out of the blue.
By early spring 2012 I had the lifetime first of being diagnosed with clinical depression. I believed this related to the onset of Hypothyroidism which I was then also diagnosed with, as this condition is known to closely mimic depression. It seemed to explain recent fatigue I’d been feeling and loss of motivation for doing things I normally enjoyed.
The intense night sweats started around then and I can’t remember sleeping a whole night undisturbed since. The onset of menopause could explain this as then, aged 43, I also started to suffer from mood swings.
Things seemed to improve after I started medication for Hashimoto’s Thyroiditis and cognitive therapy helped. Bouts of fatigue continued. Every time I felt drained for a few weeks at a time, it crossed my mind to have my thyroid levels checked. If anything, they were on the high side of acceptable.
New symptoms crept in. In 2014, my husband and I started to self-build our house. At the time subtly shifting symptoms were the least of my priorities, being outweighed by the stress of labouring/managing/purchasing everything ourselves, while living in a mobile caravan. This was the only way we could afford it. There was no time to be ill.
In January 2022 my symptoms ratcheted up to a whole new level. By then, aged 53, my immune system had apparently had enough. Our house, save for a few loose ends, was essentially complete. My husband, who was then recovering from major life saving surgery, was suddenly catapulted into being my carer as I became acutely debilitated.
No doctor I saw could figure out any reasonable cause for my now, very severe symptoms. I was having so many I didn’t know where to begin describing them. After two hospitalisations, multiple visits to A&E, numerous specialists and tests, over a period of two years, I ended up with diagnoses of Irritable Bowel Syndrome, Diverticular disease, Osteoarthritis, Fibromyalgia and Functional Neurological Disorder.
I couldn’t walk and was having severe episodes of neurological malfunction with panic-like attacks. My senses were distorted; I could smell odours that weren’t there and had instances of altered spatial perception. I was tremoring uncontrollably much of the time. I completely lost my appetite and 5 kilos dropped off me in weeks. My life, as I knew it, had ended.
I was fortunate to have a thorough and tenacious GP, who first suggested I could have Lyme disease. Initially it barely registered. I read a publication by Lyme Disease Action and saw all my symptoms described. I had no idea Lyme disease could attack the central nervous system having only ever associated it with flu like symptoms and arthritic joint pain. The small bulls eye rash I’d developed back in 2011, which had never been treated, had apparently led to late stage disseminated Lyme disease.
Two more ELISA’s and a Western Blot later, I still tested negative. None the less, my GP procured a clinical diagnosis of Lyme and I finally had antibiotic treatment. A 21 day course of oral Doxycycline helped me regain what I would guesstimate a 70% return to my former function. I still had symptoms, though not as severe.
In January of 2023 I noticed a significant change in my vision. I was advised to arrange an eye test and OCT scan. To my surprise the optometrist asked if I’d had any recent head trauma (which to my knowledge I hadn’t). The results showed my left optic nerve head had tilted, been inflamed and there was nerve atrophy. Evidently, I now had optic neuropathy and permanent loss of left eye peripheral vision.
The optometrist was fantastic and consulted an ophthalmologist colleague on my behalf, who agreed the injury was consistent with the diagnosis of Lyme neuroborreliosis. I found myself referred to ophthalmology and neurology for further investigation early in 2024 after my vision loss was discovered. The ophthalmologist confirmed this was the end stage of an inflammatory event.
In neurology I had a lumbar puncture and brain MRI and was tested once again for Lyme and other infections. The lumbar puncture was normal. So was the scan, apart from a small subarachnoid cyst and some white matter lesions. MS was ruled out, though my symptoms at the time were MS like.
The neurologist I saw chose to support the previous diagnoses of consultant colleagues based purely on my negative tests. In total disregard of my clinical Lyme diagnosis, historic untreated EM rash, and optic nerve damage, it was suggested I did not have, nor ever likely to have had, Lyme disease. When I questioned why I had improved after a course of doxycycline, I was told “we don’t diagnose diseases based on treatment response”. According to the neurologist the visual disturbances and headaches I had were migraines (in spite that I had no personal or family history of them) and my shrivelled optic nerve was pure coincidence. I had FND and should be given cognitive therapy!
I was rendered speechless. I didn’t linger or allow myself to be examined. Before I exited, I was strongly encouraged to look at some FND websites (one glossily presented and celebrity endorsed) and handed a slip of paper with relevant web addresses. I was even more unconvinced after looking, and felt like the proverbial square peg forced into a round hole. I declined the offer of a second opinion, having by now lost all faith. I found it odd the neurologist avoided discussing that which was of huge significance to me as a patient and the reason I was there in the first place; my vision loss.
Unfortunately, this wasn’t the only time in the last 2 years I’d had negative experiences. Though maybe this was the first I’d felt blatantly and medically gaslit. Different doctors on many occasions had asked me “is everything alright at home?” I wondered if I was at fault for not explaining my symptoms clearly. Then I didn’t really know how to.
Neurological pain is unlike any other pain I’ve ever known. It’s a deep systemic pain which seems to come from everywhere. Incredibly difficult to describe compared with the kind you might get, say from stubbing your toe. As for how to explain altered perception? No wonder they thought I was in need of psychiatric help.
It struck me how through my own naivety I failed, at the time, to realise what doctors were driving at when first asked about my home situation. All I knew or cared about was how ill I felt, and how useless my legs had become.
I was patronised numerous times. One occasion by an attending physician who couldn’t find a reason worthwhile to examine me. “What is it that bothers you most today?” I’ve been treated with disdain for taking up valuable NHS resources, and offered the ability to claim benefits as though my only motive was to gain state financial aid. All I wanted was to get better, and to be a burden on no one.
If I were a malingerer, why would I go through such physical and financial effort to be seen, as every hospitalisation/outpatient trip involved return three-hour ferry journeys and often a two hour drive each way, plus overnight stays.
The psychological impacts of being left unvalidated and feeling judged have been profoundly disturbing. I started to drink more as it helped with the pain and tremor. It distressed me, knowing there was no more treatment available, no appropriate support, and no real solution. It was intensely isolating and frustrating. Those who were supposed to, didn’t even seem to care.
It may have been unconscious bias due to my age and gender, or the knock-on effect of relentless NHS underfunding, but it was dehumanising. It has explicitly eroded my trust in the NHS. Now I have a huge amount of anxiety whenever I so much as think about approaching a doctor.
After this final straw, I joined the legions of dispossessed Lyme patients forced to find and fund their own treatment independently. It grieves me to see there’s a widespread belief amongst the more doctrinaire minded that we do this trivially. For myself this is certainly not the case.
In April 2024 I began private treatment after being accepted as a patient of a Dublin-based infectious disease specialist. For the first time I felt I didn’t need to justify my symptoms. It was an enormous relief. It’s still early days, and I have gone through three months of hellish pain, but I’m hopeful I can regain more of my former health. What I first thought was an allergic reaction, the skin rashes I suffered during the first month were most likely a significant ‘die off’ or herx reaction.
I only regret that I viewed this option as a last resort, because I truly expected the NHS would know how to fix me. I found it hard to believe the Lyme patient horror stories documented in news items I’d read, until my own personal saga unfolded. After all, who would believe a single poppy seed sized bug is able to destroy someone’s life?
I can only imagine if I’d not received any antibiotics, I may have had to deal with more significant sight loss, or worse. I’m horrified for those who aren’t so fortunate as myself. No one who is that much at risk should have to fight to be taken seriously.
However, I’m happy to say that LDUK Lyme awareness posters have already had a positive effect within my small island community. I know of someone who recognised a Lyme rash and had prompt treatment as a result. I can emphatically say that in the case of tick borne infection, prevention is way better than cure!
