It has been 10 weeks now since I was diagnosed with lyme disease and began treatment, so here’s an update.
At the beginning I herxed a little from the antibiotics, very normal albeit unpleasant. It passed quickly each time and wasn’t anything I couldn’t cope with. Then things started falling apart, I started falling apart.
I had bipolar mood swings despite being well “stabilized” on my meds , the worst acne I’ve ever had in my life, the worst insomnia I’ve ever had, pain, blood pooling, heart palpitations, pre-syncope (almost passing out), and major major fatigue, SO much fatigue and weakness that there were many days where I could barely walk! None of these were new symptoms for me, just much much worse than usual or rearing their ugly heads when I hadn’t had to deal with them in a long time.
I’ll admit, I freaked a little. I knew it would be hard, I knew what I was getting into, but this was not it!
So I talked to friends who have been doing this a lot longer than I have, and ran in to my doctor at a fundraiser and mentioned it to her (and showed her, since that day I couldn’t walk more than a few steps at a time!), and every one agreed that I should take a break from my antibiotics. I really didn’t want to, so I debated for a few weeks, until I finally made up my mind to try it.
What convinced me was that I kept saying “if I knew this was herxing I could cope with it a lot better, but I don’t think it is” and a friend finally said “just take a break from the antibiotics, if things get better then you know it’s herxing!”.
So after 11 days off, I think my verdict is this:
Mood swings = herxing
Blood pooling, pre-syncope, palpitations = yet to be determined condition (undergoing a million different tests over the next couple of weeks, so we shall see)
Insomnia = lyme symptom but doesn’t seem to be related to antibiotics. However it does seem to be retreating with help from some supplements my doctor suggested :]
Pain, fatigue, weakness and walking problems = typical ME crap, perhaps maybe made a little worse by herxing. I haven’t had any trouble walking since being off of antibiotics, but it comes and goes, so that’s inconclusive.
Over the days off of antibiotics, my pain was off the charts…I find that an interesting tidbit of info, that I’m not really sure what it means yet, but after 2 days back ON antibiotics it is not any better. :[
Interesting as all of that is, I still don’t really have an answer; and now I’m scared starting antibiotics again that it’s only a matter of time before I’m getting worse again.
I have learned over the many years that I have been sick, and especially recently, to trust my instincts. I know my body, better than anyone else, and when my instincts talk I listen. Right now, my instincts are screaming that something isn’t right…I just have to figure out what it is.
There is a missing puzzle piece, or maybe several, and until I figure it out I think I am going to continue to have problems.
I am so tired of worrying about this.