Thought it might be helpful for me to come back to give an update having been off antibiotics for just over four months now. And, well, I feel pretty great thank goodness....
Just to update anyone new, I was ill for several years with all sorts of undiagnosed symptoms (starting with fatigue and headaches, moving on to nerve pain, breathlessness, chest pain and much more). After ruling many other illnesses out I asked for a private referral to a lyme specialist via my GP (I work outdoors and have been bitten by ticks numerous times). I was diagnosed with lyme in Jan 2010 and treated with antibiotics (meds provided for free via the NHS in consultation with the private specialist). I tried a few different combos, but it was Doxycycline 200mg twice a day with tinidazole that worked. I took probiotics and a multivitamin, but nothing else. I noticed a slow but constant improvement of symptoms (and herx reaction for the first week of Doxy). I tried coming off the antibiotics in April this year but relapsed within weeks. After another three months of treatment I came off again and four months later still feel great.
I still have some minor nerve damage, but this is actually getting a bit better over time still (nerve damage can take years to heal). I have normal levels of energy, and my metabolism seems to be getting back to normal too (I lost weight on the antibiotics). The only remaining issue is I still need to take probiotics occasionally, as my bacterial levels aren't quite right and I have had a couple of minor thrush infections. Hopefully this will also settle down over time as my friendly bacteria comes back properly.
I really want to remind everyone that people can, and do, get better from lyme disease. Antibiotics are unplesant, but getting my life back was worth every single tablet and doesn't seem to have done any long-term damage. Being free from tablets is wonderful - I don't even need vitamins any more as my diet is back to normal. I can't explain how lovely the first glass of wine was!
Anyway, the reason I am saying all this is that it is so important to have hope. I have read far too many stories about people being on treatment for decades and never getting properly well. I suppose this is the danger of a health forum - people rarely come back to share their stories when they are well. But, I plan to keep popping back to remind everyone that it does happen.
Keep on taking the meds, keep on researching and keep on hoping - there is an end to this illness!