I have been talking about starting a blog for AGES so I have finally got around to setting it up. Over the last few years, some of my friends have told me I should write about my experience of Lyme disease and share it. I know that I have read lots of Lyme blogs and other health blogs and found them very helpful and reassuring and now I hope that I can join those bloggers in spreading information about Lyme disease.
Currently, I am still fighting Lyme, still taking antibiotics and lots of supplements but I am winning my fight. I am going back home to Edinburgh and back to university in September to (finally) begin my PhD and (hopefully) get my life back. I am now at a stage where I can reflect on the last few years and I feel really strongly about spreading information about Lyme because I believe that if I had known what it was six years ago I would never have got as ill as I did. There are lots of people suffering from Lyme, but it seems to be an invisible illness in many ways. It is difficult to understand and to explain and for many sufferers, or "lymies", this makes coping with the illness as difficult as treating it. Hopefully if all we lymies share info about Lyme more people will become aware of the seriousness of this illness and increased awareness will lead to better understanding, diagnoses and treatments.
There's no way I can really describe the last 6 years in one blog post, so I'll try to summarise it. Like many Lyme sufferers I was initially "diagnosed" with chronic fatigue syndrome (CFS) - a pretty useless diagnosis as it isn't really an illness but a group of symptoms and there is no treatment for it. The general medical advice is "keep it and maybe it'll go away on its own". I got ill in January 2005, when I was 22, while studying for my MSc. With lots of support from my university tutors and my family, coupled with sheer determination, I managed to complete the MSc but suspended my PhD which I had intended to start that September. Over the next couple of years my symptoms gradually got worse - unrelenting fatigue and extremely low energy levels, horrendous headaches and migraines, general aches and pains, sensitivity to noise, low concentration and low mental energy, weak muscles, nausea... the list goes on. At my worst I could barely walk and had to use a wheelchair if we went anywhere. I had days where I hardly had the strength to get out of bed. I could not drive, go out on my own, or even wash my own hair (I lay on the kitchen worktop and my Mum washed it over the sink, very convenient idea!).
In 2007 I came across the idea that CFS can be caused by certain types of bacteria that can avoid detection by the immune system. After much research in that area I started taking some supplements one of which (allicin, derived from garlic) was known to be antibacterial. In 2007 I improved but I was still very ill. Lots more research and reading eventually lead me to Lyme disease and I was diagnosed in 2008. My diagnosis was done by a doctor who took blood cultures and examined them using dark field microscopy. Not long after this - and very luckily for me - my Dad got a new job in Pennsylvania, USA where Lyme is very common and everyone knows about it. I began seeing a fantastic doctor who specialises in tick-borne diseases in 2009. And so began my journey "out of the Lyme light".
Info on Lyme here:Lyme Disease Foundation