For those who don’t know, early in 2016 I was training for an English Channel relay for the Aspire charity. I was at a stage in my life when I wanted to give something back, now it is uncomfortable to be asking for charity myself. After training at a local lake, strange symptoms appeared, with an inconspicuous bite on my chest. A few weeks’ later things had gotten considerably worse and I was blacking out upon standing, in a lot of pain, nauseous, confused and unable to get out of bed with crushing fatigue, no matter how hard I tried.
After 3 months in hospital I was sent to the National Hospital of Neurology who diagnosed me with a condition called Postural Orthostatic Tachycardia Syndrome – my nervous system wasn’t working as it should. They couldn’t explain how it had come about so suddenly from being a perfectly fit and healthy man, so I did further digging. I finally found something that made sense with what I was feeling, the additional unexplained symptoms and why things had been so sudden, and remembered the bite – could it be Lyme Disease?
I had to send my blood to a lab in Germany in order to get an accurate result, and after a week it was there in black and white – Lyme Disease had suppressed my immune system, given me positive markers for multiple ‘co infections’, and was responsible for damaging my nervous system.
After a month or so of weighing up my options (it had now been 8 months post bite so had already progressed to a chronic stage) the most likely way for me to get better and to stabilise the POTS by killing the underlying infection was to travel to the USA for specialist care. Trust me, that still sounds crazy to me that I’m having to do that. I travelled in May 2017 to Jemsek Speciality Clinic in Washington (http://jemsekspecialty.com), only possible by the generosity of very special friends and family, had it not been for them I dread how things would have turned out.
Things are indescribably tough, both mentally and physically, treatment is heavy going, taking on average 48 tablets a day with side effects of their own. I am now what is predicted to be half way through treatment, and despite ups and downs (a consequence of killing the bugs), progress is being made and I’m getting back to some resemblance of ‘normal life’. I am again enjoying time with my two boys, relying less on other people to look after me, out of the wheelchair for all but long journeys and returning to consistent part time work.
Unfortunately, that has come at a massive cost financially and family savings are now depleted, I estimate to have spent around £20,000 thus far on fighting this thing. Drugs and consultations are, on average, costing around £600 a month and I am required to return to Washington in May (a year on) in order to continue under the specialists care; this is where I need your help. For medical appointments, the flights to Washington, and 12-18 months of further treatment, the cost will be around £12,000, with half of that needed before May 2018.
If you have any questions or any fundraising ideas please contact me on [email redacted].
Thank you from the bottom of my heart.
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