Dear antibiotics; I think we need a break…

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.



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6 responses to “Dear antibiotics; I think we need a break…

  1. Christine

    I can totally relate to how much this SUCKS! I had to try a few different antibiotics before I could find one I tolerated. For the first handful of months, I improved slightly (not more constant chronic pain and less vertigo), but every other symptom raged on. I kept going on and off antibiotics, and like you, I felt no better on or off them!! It’s so frustrating 😦 I wish I had answers for both of us.

    I’m trying an herbal protocol at the suggestion of my doc, but, who knows?


    • I hate that you can relate! I hope the herbals work for you! It is SO frustrating not feeling better or worse…I never thought id say I want to feel worse!! I’m preparing myself for a longggg talk with my LLMD one of these days soon, so hopefully she will have answers. :/


  2. Another big hug AM ❤ (I've got plenty left 😀 )


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