Hi folks,
Thanks for lots of interesting replies. It seems there are lots of opinions on this. I personally don't feel that being on any lyme medication long term (pharmaceutical or herbal) without reason is sensible, especially when we just don't understand the long-term risks. But, I also don't feel it is a good idea to just stop when you think things are manageable - this means you are possibly still ill and could well decline again. It only seems sensible to try stopping treatment when you aren't noticing any improvement over weeks.
My lyme expert said that a lot of the time working out when to stop treatment is effectively an experiement as there is no test accurate enough to assess when all the bacteria have gone. At my first attempt I relapsed within a few weeks, this time around I am so far 8 weeks without any treatment and feeling great. I still have some nerve pain but this is slowly getting better on its own (leftover damage from lyme I suspect). Oh, and it's worth pointing out that I got pretty tired for a couple of weeks after coming off the antibiotics, probably because I was so worried about relapsing again, so it's important to keep an open mind. I am also monitoring my body temperature (which used to be very low but is now normal) to check there are no changes. If I'd waited until all the nerve pain had gone I'd probably be taking a huge amount of unnecessary medication.
Doxy, tinidazole, exercise, hot baths and a low sugar diet - 1 1/2 years of treatment in total. No herbals or other diet limitations. This could be it.... :o)
Kirsty