Sometimes during my recovery, I want to scream. But I tell myself to hang on. Because with Lyme, you often have to feel worse to get better. Welcome to the Jarisch-Herxheimer Reaction, or “herxing.”
Today, for instance, my chest is tight and burning, and there’s an uncomfortable sensation like ice water running through my veins. I feel ill all over, like you do when you have the flu or a high fever.
There’s more: Joints in my left foot throb, along with both knees and hips. My legs and arms are on fire with a burning pain deep in the tissue, as is my digestive tract. Add in weak muscles and low energy, and you can see why I’m on the sofa.
My mind might as well be underwater, my thinking is so muffled and remote. (As you may have guessed, it’s actually taking me several days to write this post). Chills crawl over my lower back and hips.
On the worst days, I don’t feel up to reading or watching a movie or visiting with a friend by phone. All I want to do is lie here. I’m good with that. Here’s why.
First described by Viennese dermatologists Adolph Jarisch (1895) and Karl Herxheimer (1902), the Jarisch-Herxheimer Reaction refers to an increase in symptoms like chills, fever, and pain early on during treatment for certain illnesses.
These doctors observed the reaction in syphilis patients; later doctors saw it in patients with other illnesses, including Lyme. With Lyme, it may be caused by toxins released as the bacteria die off.
The name is a mouthful, so most people call it herxing. Here’s the good part: The reaction confirms infection, very helpful for diagnosis especially since Lyme testing is unreliable. It means the medication is working.
Case in point: my first herx.
A primary care doctor had prescribed a couple of weeks of antibiotics for possible Lyme following a tick bite, bull’s-eye rash, pain and fatigue. When I suddenly got worse after starting the antibiotics and could not get out of bed, I called her to report my rapid downhill slide.
She told me that my body simply wasn’t tolerating the medication. She said she’d just gotten my Lyme test back and it was negative, so to stop taking the antibiotics—I didn’t need them.
I know now that she didn’t understand that Lyme tests can’t be relied on. And she didn’t realize I was herxing.
The Lyme kept thriving, launching me on a lengthy battle to find a Lyme literate doctor and get on the right path.
On antibiotics I cope as best I can until I get to the other side. I’ve had herxes last a few days or a few weeks, depending on where I am in my treatment and which medications I’m starting.
Lyme literate doctors may adjust treatment depending on the severity of the reaction, and suggest steps to take at home to get a little more comfortable. (By the way, see this interesting blog post by a Lyme doctor about babesia and herxing).
Blogger Lymechick offers a video on detoxing. My acupuncturist recommended drinking plenty of filtered water with fresh-squeezed lemon juice. I also soak in Epsom salt baths, which for me lessens the flu-like feeling dramatically. My microwavable heating pad is my best friend.
Getting through a herx is no small feat. But when the heightened pain and other symptoms lessen as the herx winds down, I know I’m that much closer to getting rid of infection and getting back to good health.
Tagged: antibiotics, detox, escalating symptoms, getting worse, herx, Herxheimer reaction, herxing, infection, Jarish-Herxheimer reaction, LLMD, lyme, lyme chick, lyme disease, lyme literate doctor
Hope you feel better soon! It sounds like you are on the road to recovery 🙂
I am well on the road to recovery, thanks for your good wishes!
I know all to well what you are going through. I have been battling Lyme and Protozoa Rhuemitica for over a year. When I first started with my treatment I herxed for over a month. A month a pure hell. There days when I thought I was going to die.
Now my current treatment has stopped working and have to go on a new cocktail of meds. So bring on the herx again.
You may want to try a low fat plant based diet. It has done wonders for me. You may also want to stay away from Epsom salt baths. The magnesium is bad for us lymies.
I wish you the best of luck!
I’m so sorry that you are on round two. Hang in there.
I’m no expert, but it seems that many LLMDs have come around to thinking we need magnesium even though the bacteria may be feeding on it. We’d like to starve the bacteria, but we need magnesium. Yet another complexity in the lyme world. More research, please!
Reblogged this on Dr. Shaun Riddle, ND and commented:
This is a great blog post describing die-off reactions or “herxing” from treatment for Lyme disease.
How do you know what’s herxing vs. just feeling awful from the Lyme Disease? I’m 5 months into treatment and I feel awful most of the time. I do know that I had a week of severe herxing when first starting abx., but now I don’t feel like I can ever really figure out what’s herxing vs. a lyme flare vs. not detoxing enough, etc.
That’s a good question, and one to discuss with your LLMD. I bet the answer is some of each. Reinfected in September, I am only just beginning to have some periods where I don’t feel terrible. Everyone’s experience seems to be unique. Do others have thoughts on this?
I have been having actual heart pains but have been to a cardiologist and echocardiogram says no problems. I am led to believe that this is herxing. It makes me a little nervous.
I wonder if that’s the only test you should have, hope your LLMD has feedback for you.
I’m worst I used to have flareups every three months than every three weeks now every day. I just sopped antibiotics because I need a pain pill and that is just to hard to get now so I stop and use a muscle relaxer when I can’t walk because my ankles and hips hurt
I am so sorry- you might consider seeking a Lyme literate doctor to help through http://www.ILADS.org. Antibiotics are tough at first as they kill the bacteria but the reward is getting well !
[…] flu. When I finally got diagnosed with tick-borne illnesses including Lyme and started treatment, I got sicker from the medication, par for the course like cancer patients on […]