I’ve been volunteering with LDUK since 2016, and although I wish an organisation like ours wasn’t needed, I do love what I do. Raising awareness of Lyme disease and tick bite prevention has given me a sense of purpose, it makes me feel as though my suffering hasn’t been in vain.
My role mostly involves managing our public Facebook page and helping out with the website so I’m able to help educate people about the signs and symptoms, provide advice and direct them to the right places for help. We provide the kind of support that we all wish we’d had at the start of our Lyme journeys. Here’s the shortened version of mine…
Over the summer of 2007 I spent a few weeks in New Hampshire (NH), visiting friends and working at a summer camp. We were surrounded by woodland and I was covered in insect bites – I thought it was normal; I was often bitten by insects and my skin was usually reactive. But during my stay, I had a sudden onset of illness including fever, nausea and a severe headache.
Back home a few weeks later, I felt like I had the flu and woke up one morning retaining water and covered in white pustules. I went to the GP for help. Mum asked him whether it was Lyme disease – the GP said he’d never seen anything like it but it definitely wasn’t Lyme disease. Of course, no one would ever have looked at my bizarre rash and thought ‘Lyme disease’ but I’d just returned from NH – a state with one of the highest incidences of Lyme disease in the US, and a state that now has evidence for local transmission of 5 different tick borne diseases. I was clearly fighting an unusual infection yet I wasn’t even offered routine blood tests.
The GP had another doctor join him and they agreed I looked ‘post-viral’. I was given steroids and sent on my way. I never thought to challenge them because I was so young, and had no idea what Lyme disease was. Back then, I didn’t even know what a tick was! This was also in a time before people used the Internet to self-diagnose… unfortunately it would be 9 years before I’d figure it all out.
In February 2016 I was exhausted, ill and all out of patience.
Over the years I’d been diagnosed with various things such as IBS, depression with anxiety, and OCD. I struggled with sleep, and had a long list of seemingly unrelated symptoms. My weight fluctuated, I struggled with regular thrush infections, and I developed cystic acne which stuck around for 2 or 3 years (finally shifting after a 5 month course of roaccutane). It was a tough time. I was tired and weak, and had terrible back pain that was attributed to scapula dyskinesia, mild scoliosis and poor posture. My eye sight had deteriorated, I’d visited the hospital multiple times and I’d even had mumps at one point! I was sure something bigger was at play – there had to be something linking all my symtoms and conditions together. So I marked down every health problem I’d had over recent years and went to the GP for help. Despite my spreadsheet of physical symptoms the GP I saw was ignorant and dismissive, and suggested I seek counselling.
So I left the doctors surgery, feeling lost and hopeless.
I told my mum about the appointment and she mentioned how I hadn’t been right since I’d returned from NH in 2007 and maybe I should look into Lyme disease after all. I was at my wits end with one of my more embarrassing symptoms, so I decided to search online for answers. And there is was – Lyme disease, along with a list that included every symptom I had previously experienced or was currently living with. The puzzle pieces began slotting into place…
From there I opted to test using Medichecks before heading back to the GP, as I was sure they’d turn me away. The test came back positive for exposure to Borrelia, the bacteria that causes Lyme disease. I called my surgery and was luckily handed over to a more experienced GP who seemed generally interested and wanted to help me discover what was going on. I gave him an overview of my health problems and told him all about the neurological symptoms I’d been living with but failed to mention to anyone; the tingling sensations, the numbness, the random bolts of sharp pain, the twitches, the crawling sensations on my skin…
I’d been living with these things for years thinking that either I was just a bit weird, or that everyone had them and no one talked about them. How wrong I was!
I found my way to the Lyme Disease UK online community and a few months later put myself forward to join the volunteer team. The LDUK community is a lifeline for so many people and it certainly helped to keep me from drowning in the confusion and pain of my situation. I’d been dealt an unfortunate hand and was dealing with a lot of negative emotions but I had to do something to help, I needed to use my experiences to make a difference.
My health deteriorated throughout 2016 and although I tested NHS positive for exposure, I was referred to both neurology and infectious diseases but unable to get treatment. There are no NHS guidelines for treating someone presenting with symptoms of Lyme disease 9 years after infection. There is even less help for anyone living with co-infections – despite displaying symptoms of both Babesia and Bartonella (commonly transmitted alongside Lyme) I was denied testing and told I couldn’t possibly have Bartonella because my foot “would’ve fallen off by now” – said by an actual NHS professional at Hammersmith Hospital. My helpful GP retired, and as far as the NHS are concerned, I have Chronic Fatigue and Chronic Pain (for which they’ve been very helpful).
Since joining LDUK and doing plenty of research (as most of us do) I’ve learnt how to manage my symptoms and found a few things to help me regain a certain level of normality.
I’d love to one day say I’m symptom free (as we all would) but for now I’m just pleased to be better than I was. I’m currently able to work part-time, volunteer for LDUK and enjoy time with friends and family, provided I’m pacing myself. I watch a lot of TV, enjoy a good walk when I’m able to, and on a good day I might even bake! I like to read and write, and at the end of 2017 I graduated with an MA in creative writing… the novel is slowly on its way!
*Rachel has now stepped down from managing our public Facebook page and manages our web content.