Lyme – Worldwide Protest Days – 10, 11 May 2013

On these two days, around the world, Lyme Disease sufferers, their friends and families, from 29 countries will protest about the poor response of their political and medical systems to Lyme Disease.  I will be going to London, flying 700 miles, to take part in our event at the Department of Health in Whitehall.  Awful though the disease is, it’s good for us in the UK to hear that we are not alone in having to fight for timely and correct diagnosis, and recognition of the disability the disease can bring.  It has struck me, just this morning, that although many of these countries have quite different medical systems,  and they operate in different political contexts, the controversies are the same.  So I wondered what they do in China, where both medical and political contexts are about as far from ours as can be imagined.

Web browsing for the official Chinese position on Lyme I stumbled on this from a USA Congressman’s (Virgina) site.  It’s just over a year old and refers to the outdated IDSA guidance having been reinstated without revision. and I wrote to the 3 named Congressmen to congratulate them and find out how it has progressed since then.  Anyhow, it seems the Chinese have isolated about 9 different strains of borrelia but the majority are afzelii and garinii, the most common in Europe.  While I was in the writing frame of mind I dropped a line to my old mucker Charles Kennedy (MP), and HRH Prince of Wales for good measure, as well as helping NS (a.k.a. ‘Limeywifey’ – look for her blog) send press releases to news outlets.

The other BIG news of the day was that my dear, wonderful, funny GP agreed to extend my antibiotics for a further 8 weeks!  What a star!!  Given that many people can’t get past 14 days of Doxycycline it’s nothing short of miraculous that he would let me go 32 weeks of the triple drugs.  Of course I had more blood tests to do, to make sure my liver is coping.  I have been wondering about why, if I started treatment within 5 months of a known bite, the Lyme is so entrenched with me and came up with a theory: I’ve had it a lot longer.  I’ve been bitten by ticks pretty much every year, sometimes more than once, since we moved here in 1998.  In 2003 (I checked my records) I went to the doctor with a curious set of neurological symptoms that obviously resolved.  With the benefit of my pseudo-expert hindsight these symptoms look pretty much like Lyme.  It’s a ratbag of a disease: it can lie dormant for week, months, years – maybe kept in check by a strong immune system – only to emerge when you are down for some reason.