In October 2011 I was at an event at a scout camp in Leicestershire. It was an unusually warm weekend for late October, which was great for us, as it meant we could spend more time outdoors exploring the woods and glades. A couple of days after the event I began to feel unwell but assumed I had just caught a cold, not uncommon after spending time with a large group of people. I was feeling feverish, my body ached all over, I was exhausted and lethargic and I was having dizzy spells. It was serious enough that I took a week off work and assumed I had a dose of flu.
After a week of rest I was feeling a little better and went back into work, though the symptoms hadn’t really resolved. Over the next two months the symptoms persisted, in fact they seemed to be getting worse. My joints hurt, my muscles hurt, I was getting exhausted walking to the bus stop when previously I had been cheerfully doing a 5 mile cycle to work. I was dizzy and shaky and worryingly I was starting to get periods of numbness in my arms and face. I went to see my GP at the beginning of January 2012 who said it was probably post viral fatigue and it should start to get better. By February, I was regularly having to take time off or getting sent home because I was too ill to work.
Post-viral fatigue was supposed to get better over time, not worse so, my GP started testing and looking for a cause. We started with the basics: glandular fever and similar, however because of my job in veterinary biology my GP knew there was a possibility I had something more exotic so broadened the search. Over the following weeks I had blood taken for everything from HIV to brucellosis to lupus, and of course, Lyme Disease. The doctor asked if I had been bitten by anything and I recalled having an insect bite, an itchy raised lump, on the back of my shoulder following that weekend in October, just two days before I first started to feel ill. The GP thought it was probably nothing to worry about but made a note anyway. The first Lyme Disease test came back negative, along with everything else.
At this point they were talking about Chronic Fatigue Syndrome and Fibromyalgia.
On May 6th, the day before my 27th birthday, I had a phone call from the GP. The second Lyme Disease test, the Western Blot, had come back positive. I had Lyme Disease. The GP said that it could be treated with antibiotics and I was sent home with a 10 day course of doxycycline. My hopes were high, that I would soon be feeling better.
I now know that that was too little too late. If administered within 6 weeks of an infection a 14 day course of antibiotics is often effective against a new Lyme Disease infection. If I had recognised the symptoms and tick bite (or even known to look for ticks) I could have gotten that treatment right away. As it was, my own ignorance of Lyme Disease and the lack of knowledge from the GP meant that it was six months before I had that meagre treatment. My symptoms were still worsening. I was unable to work safely any more and with the support of my GP and employers I was signed off on long term sick leave. I was also referred to see an infectious disease specialist, an appointment that, for administrative reasons I didn’t get for another six months.
I soon learned that if I rested enough I could do some things, but any activity would have to be followed by rest, or result in soaring pain, vertigo, numbness and a shattering level of fatigue. When I did see the infectious diseases specialist I was told that it was probably too late to do anything (it was now over a year since I had first become ill). I was treated with a 4 week course of IV antibiotics (ceftriaxone) and told to cross my fingers. I did but it was too no avail. The prevailing wisdom at that point was that the Lyme causing bacteria (B. burgdorferi) should be dead and gone by then, but it may have caused long term damage and/or triggered severe a CFS/ME type illness. Subsequent blood tests were inconclusive either way. However, that is the diagnosis I was left with, which is now called “Post Lyme Disease Syndrome” a term that refers to all the cases of people with chronic symptoms following a Lyme infection.
And what’s it like? It’s hard. It’s really hard. Every day feels like it follows a sleepless night, even on those nights I’ve slept well. I have constant fatigue ache in my muscles and frequent searing pain in my joints and limbs. I am prone to bouts of vertigo and migraines and am in a perpetual state of slight confusion, the cognitive impairment known as “brain fog”. I take a number of medications every day to manage the symptoms and make things easier (yes those symptoms happen even after all the medication). I see a CFS/M specialist who is there to help me manage the condition as well as possible. Every activity I undergo from things as simple as having a shower to bigger things like a an evening out with friends has to be carefully managed and weighed: Have I rested enough for this? Are my symptoms stable enough? Will I be able to rest properly afterwards? Will the benefit of the activity be worth the heightened pain and fatigue afterwards? I am acutely aware that everything I do now comes at a cost.
I can’t go hill walking any more or cycling through the countryside. If I prepare carefully, rest thoroughly before hand, take my medication and plan ahead, I can manage a short gentle walk in the country, if I accept that I will need to rest completely for the next few days. That’s why I can’t work – no job allows you to have that much rest and preparation before a shift, then a good few days off to recover. I have had to cut back work, hobbies and social events severely, so that I can manage day to day life and have enough reserves to engage in the occasional well planned activity. Don’t get me wrong, I still have hobbies and I see my friends, but nothing is spur of the moment and nothing is without planning.
And it’s not getting better. There is no cure. They don’t even know exactly what this is. It’s all management, and the hope that one day that it will be managed enough that I don’t have to plan my life like this.
If Lyme disease is known about, spotted and treated early, you don’t have to go through this. Had I had antibiotic treatment in those first few weeks, or known to look for ticks, this might not have happened. But if you miss it, there is a chance you could end up like me.