Antibiotic Question

It could be a side-effect, as Bactrim is known to cause glossitis (swelling of the tongue). But could also indicate allergy to the drug...make sure you contact your doctor about this.

Hi 3Whiteroses!!
I am so sorry that you are having such issues. I don't have any experience with that abx, but it does sound like you may have had an allergic response to it!!

I wanted to say I'm so sorry that have had such troubles!

Warm, fuzzy, healing thoughts to you!

Caldonia Sun did you stop the antibiotic after you developed the rash?

3whiteroses,

I had something of the same nature happen to me this past spring. I had been taking Augmentin for over a year, because it was the ONLY antibiotic I could tolerate (and made it through the Herxing). My doctor kept telling me, for months, that he wanted to switch me to something stronger, but even the thought of switching made me cry. I was so scared - every time I started something new, it was something else - vomitting, diarrhea, an unbearable increase in pain, bladder pain and spasms, etc...ALWAYS something.

When I started having neurological symptoms, he insisted on switching and put me on a VERY low dose of Minocycline (start low and work your way up was the plan). I was taking HALF a capsule every OTHER day...literally breaking one capsule open and dumping half the powder out. Within 5 to 7 days my body was swollen, covered in a severe rash, hives, golfball-size nodules down the back sides of my forearms, soccer ball-size welts on my inner thighs, and hands like balloons (very painful and obvious useless - I couldn't even open a door handle). My skin hurt so bad and I was burning up. I remember sleeping with the palms of my hands up because the heat radiating off them was incredible.

My LLMD finally told me to stop taking the medication, that it was a herx...and really to just wait it out (had I gone to the E.R. they would've given me steroids, which is not good for Lyme patients!). Well...the rash and swelling persisted and wasn't letting up. It was starting to scare me, and I was also in severe pain, basically rotting away on the living room floor. I was so swollen I could hardly stand and wasn't even able to fix myself something to eat. I barely even had the energy to cry.

I finally called my LLMD again and the nurse finally said, "You've got to get to the E.R. ASAP," which I did. I have no idea how I managed to drive myself there, but I did, and sure enough was given steroids. The E.R. told me it was an allergic reaction (despite this doctor being probably the ONE doctor who was familiar with Lyme and Herx reactions...and despite me having NO allergic reaction to Minocycline the year before!).

So, I guess what I wanted to share with you is that most doctors and pharmacists will assume you're having an allergic reaction, just because they don't know enough about Herx reactions, but my guess is that you're dealing with a fairly typical Herx...not that it's any less dangerous than an allergy (and you have to think about what's going on INSIDE your body - to your organs, too!).

My doctor said I am just too sensitive to take antibiotics right now - there is way too much bacteria...hence, I just started an herbal tincture. I'm starting slowly and working up to the full dose, but it's been great so far (except for the taste!).

I'm glad you stopped the medication - sounds like you just need to touch base with your doctor to let him know what happened.

Like I said, Herx reactions are so different each time; I had taken Minocycline last year and had one kind of Herx (can't remember if it caused severe dizziness and vertigo, or vomiting, or just really intolerable pain)...and then this year when I tried it, it caused a completely different Herx (mimicking an allergic reaction). You just never really know what's going to happen - and I have experienced your fear of wondering, "what am I going to do now?" since I feel like I've tried almost everything. I know I need a high dose of antibiotics to get better, but how in the world do I do that when I can't even tolerate a little dose?

I, too, hate medicine - I struggle every single day to take whatever it is I need to take, and it doesn't matter if it's a pill or liquid or whatever...and of course it doesn't help knowing that the very thing you're taking to make you better is actually making you sicker for the time being. Crazy...

WhiteRoses,

You are DEFINITELY not the only one who has problems with medications! That's the whole frustration with the Herx reaction - the very thing you need to help you is also the "enemy." Just remember - the antibiotics are bound to make you sicker. The first LLMD I saw said he never saw a Lyme patient who didn't experience some sort of worsening of symptoms when beginning antibiotics - and everything I've heard and read since then supports his statement. Even times I've called my current LLMD to complain about some new symptoms I'm having, nine times out of ten he tells me it's likely a Herx and to take vitamin C (which I do, like candy).

Also, if the Rocephin has worked for you, stick with it. I don't know anyone who found a medication that worked and went consistently uphill without any downfalls. It's often two steps forward, one step back (sometimes two steps back!). Also, Lyme is cyclical so it's probably normal that you might feel badly after feeling better for a month or so. Does that make sense? Stick it out...I spent about a year (more or less) on Augmentin and felt "better" for the most part, but certainly wasn't on a straight path to wellness... I was so scared to switch because it seemed to be working just enough for me! But I in fact had plateaued and new and scary symptoms were popping up indicating it was time for something stronger (and I don't think anyone expected Augmentin to be a cure-all anyway).

Hang in there...patience is a virtue.

Rachel