Hi everyone,
I used to be a regular here and thought it was about time I came back to update you all, and spread a bit of hope!
I was very sick with lyme for a few years. My symptoms started a good few years ago with long-term fatigue. I went to the doctor several times but general blood tests came back ok and it was put down to work stress etc so I just got on with things as best I could. Then during 2010 I developed migraine-like headaches, nerve pain, anxiety and paranoia. In November that year I suddenly declined and had to go off work sick (very unlike me). By December I was bedbound with terrible nerve pain, tremors, difficulty breathing, chest pain, numbness all down my right hand side and I was sure I was dying. All my tests came back ok and the GP admitted he was clueless. Luckily he believed that I was telling the truth about my (generally invisable) symptoms and tried testing for all sorts of things like malaria and also suggested lyme disease one day in desperation. The test was going to take a month to come back on the NHS and I was desperate for answers so went to a private consultant (Dr D in Newcastle for those who remember him before he retired) who was able to diagnose me through symptoms and response to antibiotics. My GP was happy to prescribe his recommended treatment on the NHS which was great. I will always be thankful for a GP who went against usual stupid NHS guidelines and actually listened to me and my symptoms!
I spent the entire of 2011 on antibiotics (mainly 200mg Doxycycline twice a day). It was very hard going but I saw constant progress. In early 2012 I came off treatment but relaped. Another three months of treatment and I tried again. I have not been on any medication since. I still had some nerve pain left over, as nerves can take years to heal, but that continued to get better and these days it is barely noticeable. (Incidently it wasn't all plain sailing with the NHS - I saw a local infectious disease consultant at one point who was practicially evil, and accused me, my husband and my GP of all being crazy at thinking I needed so much treatment)
I still feel better than I have for years - no pain, no fatigue and no other symptoms at all. I feel like a much younger and happier version of the person I had become with lyme... which is pretty amazing given I am currently also 28 weeks pregnant. Despite my fear that lyme would have damaged me irreversably I got pregnant almost instantly when we started trying. There have been no complications and I feel better even with the heartburn and tiredness of pregnancy than for many years beforehand. As I type this my baby boy is wriggling happily inside and I feel like the luckiest person in the world.
Lyme disease is horrendous, but you can and will get better if you take the recommended antibiotic treatment for long enough. Try one type of antibiotics but if it doesn't seem to be working after three months consider switching. Please don't listen to people who say it will be with you for life, or that you need all sorts of other wierd treatments, or that you need to be feeling ill with a herx to be getting better (herx should only last up to a few weeks). It's just a matter of the right antibiotic, time and (as much as possible) gently exercise.
I wish you all the best luck, and please keep up with the hope and smiles. Take each day as it comes but look forward to the future...
Kirsty