My full story is on my blog: www.outofthelymelight.blogspot.com so I will try to keep this very brief.
I believe I was infected in New Hampshire, USA while on a BUNAC exchange programme working as a camp counselor. I did not find a tick, but I did have multiple bug bites and spider bites – as expected from being in a wooded area. I never developed a bullseye rash (visible – have no idea if I could have had one under my hair, for example).
I suspect I had some minimal symptoms initially – cold/ flu/ digestive issues that seemed isolated. I don’t know when I was bitten, but in 2008 (likely between 7 and 4 years later) I developed a bad viral infection after returning from a trip to the US (where my parents were living; I’m Scottish and was living in Edinburgh at the time). My Mum had the same symptoms and recovered after about 10 days. I was in the middle of my MSc and pushed through as much as possible. Almost overnight, I went from a busy, athletic, bouncy 22 year old to feeling as if I was trapped in the body of a 100-year old woman. My symptoms continued to get worse and within 6 months, walking was a struggle, I couldn’t go places on my own, couldn’t drive, had severe headaches and migraines, body aches, severe fatigue and malaise and many other symptoms. My university tutors were incredibly supportive and staggered my assignment due dates, gave me extensions on essays and extra time for exams. My Mum moved back from the USA to Edinburgh to look after me and help me get through my MSc. I did most of my work from bed – lectures were emailed to me, I could attend 1 or 2 hours a day of classes, max. With sheer determination and a lot of support, I passed. My social life and everything else had disappeared, along with many friends. I suspended my PhD and ESRC funding for a year and applied for a visa that would let me stay in the US with my parents. My GP diagnosed Post viral fatigue syndrome, then Chronic Fatigue Syndrome. I was told “these things usually burn themselves out”.
For 2+ years I got worse. I was virtually bedbound, unable to walk without support or a wheelchair. I lost my ESRC funding; was forced to give up my PhD. I got ill at 22; I lost my twenties to Lyme – I’m 31 now, living with my parents due to being unable to live independently (now partly due to a badly timed, extremely unlucky fall and resulting injury) and still trying to figure out when and how I will be able to get my life together.
I struggled through my brain fog and fatigue and with a lot of help from my Mum, we learned research in microbiology relation to CFS. This led me to Lyme. In 2008 I was diagnosed via blood cultures. At this point, I’d been severely ill for 3 and a half years – every part of my body was affected. My resting heart rate was around 100bpm. I could barely function. On my worst days, I did not have the energy to chew food. It’s possible I had the infection slowly multiplying for years before that.
In 2009 I learned of a Lyme specialist due to my Dad being relocated for work in Pennsylvania, which has one of the highest Lyme incidences in the US. I started antibiotics. IV abx were cost prohibitive (over $1000 per month, plus PICC line and doctor fees). I steadily improved but experienced strong herxheimer reactions in response to my treatment. It had to go very slowly. Recovery was hard work and it is impossible to know what damage Lyme has caused.
Controversies ask: is it possible to get rid of a systemic infection? does cell damage ever repair? will I have some symptoms forever? (Lesions have been documented on brain scans of Lyme patients; veterinary microbiology shows spirochetes’ ability to evade the immune system is complex; borrelia DNA is the most complex bacterial DNA sequenced). We do not understand it. Science does not have the all answers. More research is vital before current claims can be validated – yes guidelines are based on this; rather than allowing a doctor to use personal judgement, experience, and patients’ personal ‘story’.
I still struggle with various issues, although I am a lot better. Unfortunately I suffered a severe shoulder injury, requiring surgery and adding stress to my body so I lost some Lyme progress; my specialist said the surgery had “reactivated” my infection. (Incidentally I required surgery for my shoulder in the US as there is no UK doctor currently reattaching scapular muscles.) After my Lyme experience, I was horrified with the feeling of deja vu. Having a “LYME” stamp on my medical file seemed akin to having a “CRAZY” stamp – my physical injury was dismissed by NHS and private UK medical professionals. As a result, with no pain relief addressing my severe pain, I’ve now developed a complex chronic pain syndrome. I had detached muscles for 7 months (diagnosed in the US 7 months after my initial fall – all requests for scans/ x-rays etc. in the UK denied), a fractured scapula, various torn muscles, nerve injuries, and dislocated shoulder and was told by my NHS physio that I had to “learn to deal with the emotional aspect of pain”. Just as helpful as my GP, years earlier, offering me “a support group for CFS patients” as his best option.
My recovery goes on, and my quest for information also continues – it is that quest that has been helpful; far more helpful, unfortunately, than any doctor in the UK.
Current Location: Edinburgh, Scotland/ Chester County, PA, USA
Infected in: Likely New Hampshire USA, but uncertain