So it seems it was Lyme, in the end. APRIL 2017 This is an account of my 2nd visit to the doctor for my test results. But first, I’ll tell you a story. Feel free to skip ahead to the business end of this post. We had a massive puncture on the motorway when we were 15 minutes away from our destination. This was really unfortunate as we’d left home 34 hours earlier from the north of Scotland and just wanted to reach our Airbnb and collapse with a cup of tea (if only something alcoholic). Now, our continental cousins love to drive as fast and aggressively as possible, bless them. There isn’t much of a hard shoulder on this road to move the car to and there’s a very real possibility of being mowed down by an articulated lorry if you stay with your car. We contacted our breakdown assistance and then clambered up through a nettle-filled ditch to reach a stony embankment where we waited for 2.5 hours. The giant breakdown vehicle eventually came. You never realise how high the cabs on these things actually are but, as a petite person, I had a hell of a time getting in. Still, there was no option. We jolted around in this truck, trying to find a tyre that fit our car (didn’t), until finally at 1:30 in the morning we were noisily deposited at our b & b in a sleepy, elegant suburb. Our host was a gem and waited up for us but I’m sure the neighbours were livid. I don’t know how we managed to get there; the driver didn’t speak our language at all and we didn’t speak his very well, but somehow we managed to communicate. APPOINTMENT My test results have shown that the disease started with Lyme many years ago. There were co-infections. There was a cascade of inflammation, hyper permeability of the gut, effects of LPS on the brain, and other things I can’t remember. My activity markers are quite low, but he believes some therapy is still needed to keep them that way. It is likely that late stage Lyme cannot be completely eradicated but rather controlled by the immune system. I have CVD and issues with conduction. Much pain. Autoimmunity and inflammation are big problems. My thyroid function is all over the place, fluctuating between hyper and hypo. My gut is severely leaky. Now I know the root of my SIBO is Lyme…it causes ileocecal valve dysfunction with motility problems. Many, many years of dysbiosis have resulted in a wide array of allergies/intolerances/sensitivities. My 25-OH-vitamin D is very low at 9.5 ng/mL. The doctor will produce a complete treatment plan and I’m now waiting for this. More was discussed but unfortunately my brain fog was particularly bad. CONCLUSION So the ME/Fibro has proven to be Lyme all along. As a child living in Connecticut, half an hour away from the birthplace of Lyme, I still never imagined it had affected me! I don’t know why. Perhaps it was a matter of bad timing that Lyme wasn’t on my radar. I remember picking ticks off our dogs and finding a big one in my long hair but that was a few years before Lyme gained media attention. And we moved away from Connecticut shortly after. The National Health Service in my area of the UK considers Lyme to be a 'ticking timebomb' due to the greatly increasing number of cases. It has been reported in more than 80 countries, including the Campbell Islands in the Antarctic Circle, believe it or not. (In that area, seabirds carry ticks.) If you have longstanding ME/CFS/FM, it is worth considering the possibility of Lyme. All the best.