What is Lyme Disease?
A nasty bacterial infection. Caught via a bite from an infected sheep or deer tic, the bacteria can be very difficult to eradicate with antibiotics. Starting from the skin, the bacteria spreads to the muscles, connective tissue, and brain, producing varied symptoms. Lyme Disease can be a life changing illness, persisting despite multiple treatments for many years.
Ideally, AVOID GETTING BITTEN and SEAK EARLY TREATMENT, although not everyone bitten by an infected tic develops the disease.
Unfortunately, the NHS seems to be way behind both Germany and the USA in diagnosis and treatment techniques. The reality in the UK at the moment is that many suffers are diagnosed with "Chronic Fatigue Syndrome", which can have similar symptoms. Some Lyme suffers have gone untreated for decades until they have a course of antibiotics for another condition (eg chest infection) and find their "CFS" symptoms dramatically improve.
Luckily, there are two UK charities run by Lyme Disease suffers. Both have websites which are an excellent resource for learning about the disease and treatment:
http://www.lymediseaseaction.org.uk
http://www.bada-uk.org
If you have been bitten by a tic, and develop persistent (months) flu like symptoms EVEN 5 YEARS AFTER BEING BITTEN tell your GP, and insist on a Lyme Disease test. Unfortunately the test is not yet 100% reliable: if you are lucky, your GP will diagnose Lyme based on clinical symptoms and begin treatment (antibiotics) despite a negative test, although strictly, NHS procedure forbids this.
My experience
I regularly ran offroad between 2004 and 2009 in Northumberland, Cumbria, and southern Scotland and was bitten by tics more than fifty times. I never noticed a rash or had any health problems until mid 2010:
2010 May - I started to get unusual cramps in my muscles and odd sensations from ligaments. I had 20 years regular running experience at this time and had experienced many different muscle, ligament and joint injuries but never anything like these cramps. It felt as if small sections of the muscle were contracting all the time, causing a painful tight band within the muscle, reducing muscle strength and coordination. I pestered my GP - I had big plans for the coming months as I had been selected to run for GB a few months earlier, but every test he could think to do was negative. My quads were worst affected, and eventually, as I continued running this caused knee cap pain due to shortening of the outer quad.
2011 - The cramps continued to gradually worsen and spread. Both knee caps were painful for most of the year. My GP eventually referred me to a knee specialist who advised an operation to cut a knee ligament to improve the tracking of my knee cap (I refused!)
2012 Feb - I began to experience severe fatigue as well as worsening and spreading of cramps throughout my body. I stopped running altogether.
2012 May - the fatigue was worsening and I started getting severe headaches. I had used all my holidays taking afternoons off work to sleep, and had started forgetting things and making bad mistakes at work due to tiredness. I was seeing my GP every two weeks now but still, he had no idea what might be wrong. He suggested I go on sick leave to get complete rest.
2012 Late May - After 2 weeks off work the fatigue, headaches, and cramps continued to worsen. I now slept an average 16 hrs per day.
2012 June - all symptoms worsened. GP making a home visit every two weeks, but still no ideas.
2012 July - all symptoms worsened further. Headaches were now worse than any pain I had ever experienced and were lasting for 3-4 days of every week. I was sleeping an average of 18 hrs day, 20+ when I had a headaches. I left the house once or twice a week to walk to my local shop, the 1/2 mile taking about 40 minutes and leaving my muscles full of lactic acid. It would take 2 or 3 days to recover from the effort. I honestly believed I was dying! I had been googling my symptoms and eventually found something about Lyme disease. I asked my GP that same day, who said "No, there is no Lyme disease in this area". I found one of the UK Lyme charity websites and discovered Lyme was a possibility, given my history of tic bites and symptoms. I then found out the first line of treatment is Doxycycline - an antibiotic also used as an antimalarial, available to buy in the UK online. Immediately I bought two months supply - I have never self-medicated before or since, this was pure desperation: I had no quality of life, my symptoms had progressively worsened every single week for 6 months and I thought, as Doxyclycline carries minimal risk, it had to be worth a try. The dose is strong - 4 times the dose for an anti-malarial, but luckily my stomach was OK and 6 days after starting, I began to experience the first reversal in my symptoms.
2012 August - the improvement slowly continued. I told my GP what I had done and he referred me to the infectious diseases dept at Newcastle hospital. The professor I saw there told me "yes, Lyme is in this area, I have treated three case myself, all of which initially had a negative test result" He prescribed more Doxycycline, totalling 3 months treatment and did a Lyme blood test, which came back negative.
2012 September - further slow improvement, headaches were less severe and now only 1 or 2 days a week, sleeping only 12hrs per day average, though cramps were still bad, I could now walk slowly up to 3 miles a day. My GP referred me to a mitochondrial expert for further disease tests (all negative), and then back to a 2nd professor in infectious diseases for a 2nd Lyme disease test (also negative). His final diagnosis was Chronic Fatigue Syndrome, and suggested the change in my condition after starting antibiotics was a coincidence.
2012 October - further improvement. I returned to work part time. I completed the 3 month course of antibiotics as recommened in the German treatment guidelines in mid October.
2012 December - well enough to go for a short jog at christmas time. Headaches now gone, fatigue almost gone though cramps were still pretty bad in my quads, feet, back, chest, shoulders and forearms.
2013 - slow improvement in cramps continued until late september when things quickly worsened. I had a succession of colds which coincided with a return of fatigue through October, causing me to have to stop running altogether. The fatigue worsened through November and then, by December, a return of headaches and severe fatigue was making working very difficult and I was averaging 14 hrs sleep a day. After resting over christmas and new year, I was still worse. I decided to try Doxycycline again and within a week, was feeling better than I had since October. In two weeks, I was feeling much better still and began running again.
2014 - Improvement has continued. It is April as I write, and the fatigue has completely gone (despite running 100+ mile weeks!) I still have cramps in my quads, back, chest and arms but they are improving. My memory and concentration are improving more slowly, but generally I am feeling better today than at any time since 2011.
