We most definitely have to rely on our own experiences!! That's partly why I'm still alive (literally). I was one of the first two on this forum to use herbs only to heal from these infections and was told that it simply wouldn't work and other things. My healing was "documented" here on this forum, and it was watched closely by many - if the emails and comments on the forum indicated anything! It was scary and yet amazing all at the same time.
We do try to have lots of patience here, so do forgive us if we seem to jump on you. It's not meant, but we do have to remember that not only is everyone's "journey" with these infections unique to them, but that we have some members that are very, very scared and if their experience doesn't match up with what someone else says, they can go into a panic. We want to be sure that the information here is as "balanced" as possible, with an emphasis on being accurate according to not only scientific studies, but patient experiences as well. We know that science and patient experience doesn't always reflect each other though, so we likely rely on patient experience more - at least I do in many instances.
It's all a learning curve!! I've been on this forum since 2007 and a mod since 2009 and there is so very much that I don't know even though I do try to continue to learn more all the time. This has become a fairly large community and we all try to remember all those that post and learn from each other here.
I did see changes as I was growing up, but every time I thought I had it figured out, something would change - most likely with things that doctors won't check unless they have "good reason" to check, like hormones - you know, the minor stuff
. (just kidding) - or stress in the family or other things that are known to mess with the immune function. So I ended up with periods in my life where things were 'normal', and I'd get involved with life again, just to have the rug pulled out from under me again.
These periods of 'normalcy' are common with Lyme, but it doesn't mean that the infections are taking a break. The lowered severity of symptoms could be from the immune system keeping things in check, or the immune system being too compromised to create symptoms. So we try to not assume that things are okay when symptoms are gone until we have gone through enough treatment - but even then we urge people to keep an eye out for symptoms to recur.