Tag Archives: herxing

What Does it Mean to Herx?

by Jennifer Crystal

Sometimes when I’m describing tick-borne illness, I feel like I’m speaking a foreign language.

Most people have heard of Lyme disease—though too many mistakenly call it “Lyme’s” when there is actually no possessive form. I often get blank stares when I use words like babesia, ehrlichia, and bartonella. Another term that confuses people, even those who have been diagnosed with Lyme, is Jarisch-Herxheimer reaction, more commonly referred to as a “Herx”.

A what? Bear with me.

Discovered by dermatologists Adolf Jarisch and Karl Herxheimer in their studies of syphilis—another illness like Lyme whose bacterium is a spirochete, meaning having a spiral shape—a Jarisch-Herxheimer reaction is an adverse response to toxins released by bacteria killed by antibiotics. In the case of Lyme disease, antibiotics sometimes kill spirochetes faster than the body can eliminate them. This means the patient is stuck with a backlog of dead bacteria which takes time to expel. The buildup of this toxic waste can make the patient feel much worse before it makes them feel better; their symptoms increase until their bodies can expel the dead spirochetes.

That’s one explanation of a Herxheimer reaction, but what does it feel like to actually have one?

When I started taking intravenous antibiotics, the first six weeks were awful. I’d expected the medicine to slowly clear up my symptoms the way antibiotics work, for example, on a sinus infection or simple bronchitis. But within a week of beginning treatment, I started feeling worse than I ever had before. My fatigue was as intense as it was when I first took ill. I felt a pulling sensation in my limbs stronger than I’d ever had before. I couldn’t find a comfortable position in bed because of all the the pains in my joints. Usually easy tasks like brushing my hair and washing dishes felt like workouts. My sleep became so heavy that my blood stopped circulating properly, and my limbs felt weighted. I wondered how I could still be alive when my body seemed so lifeless.

“This is great news,” my doctor said, paradoxically. “It means the medicine is working. Stay the course.”

My doctor said I was Herxing, meaning that the antibiotics were doing exactly what they were supposed to do. “Once your body gets rid of that build up of dead bacteria, you’ll start to feel better.”

You may wonder how the bacteria gets eliminated. Some of it, especially the toxins from the parasitic tick-borne co-infection babesia, is sweated out. I’d wake two or three times a night completely soaked from head to toe, as if I’d just showered. The sweat felt slimy on my body, like a lotion or oil. I often had to change pajamas and sometimes even the sheets of my bed in the middle of the night.

But most dead spirochetes are eliminated as you might imagine: through the stool. I’d sit up in bed and suddenly feel a great urge for the bathroom. Once there, I’d barely get my nightgown raised and underwear down before my bowels exploded. The release came with the rush of diarrhea but the consistency was of foam noodles snaking out of me in long tubes. The toilet filled so quickly that I had to flush before continuing to go. The toilet steamed with hot dung the color of dead, hardened manure. The smell made me gag.

During my most intense Herxes, I ran to the bathroom upwards of ten times a day. I had to make sure to drink lots of electrolyte-enhanced water, to combat the dehydration brought on by night sweats and frequent elimination. I ate bananas to keep up my potassium levels. I spent a lot of time sleeping, or trying to sleep. During these periods my neurological symptoms would also worsen, because dead spirochetes were piling in my central nervous system, which for me meant insomnia or even hallucinatory nightmares.

The span of a Herx differs by patient. It depends on how you respond to treatment. How much bacteria do you have in your body to start with? Moreover,  how quickly can your body detox? For me, a Herx could last anywhere from a couple days to a couple weeks. Then, I’d get a reprieve for a week or two, and then the cycle would start all over. Each time, the Herxheimer reaction was a little less intense, but shorter. You might feel like you’re dying when you’re having one, but in fact it’s actually the bacteria that is dying, and that’s really a good thing.

You can’t control how well your body will respond to antibiotics, but you can help the detox process. There are many theories on how to do so. Some Lyme Literate Medical Doctors (LLMDs) use actual detox protocols. What helped me the most was electrolyte- augmented water, decaffeinated green tea, and lemon juice. Talk to your LLMD about how you can best support your body during a detox, so that your Herxes aren’t so bad. And when you do have a Herx and someone asks, “What’s that?” just show them this article.

 


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

lymewarriorjennifercrystal@gmail.com

Being Lyme Brave

by Susan Pogorzelski
#MyLymeLife

When you’re finally diagnosed with Lyme disease there’s a feeling of hope. That hope can turn to pain and desperation as new treatments induce Herxheimer reactions.

 

“Does she have Lyme disease?” I remember my dad asking as he, my mom and I sat in the tiny exam room of a small brick house three hours from home.

My face was ashen. All I wanted at the moment was to layer my legs with wet paper towels to keep them from burning; all I needed was a few minutes of sleep, even if it meant curling up on the crinkling paper of the exam table. My ears were buzzing and my heart was racing, but I gathered what little energy I had to turn to my new doctor, silently begging for some confirmation of our suspicions.

“Oh, yes,” he replied. “And at least one of the co-infections.” He reached for a paper outlining my new treatment plan while my parents and I exchanged relieved smiles. Tears welled in my mom’s eyes; I could see the weight visibly lift from my dad’s shoulders. At last, we had answers. At last, I could start on the road to recovery.

“It’s not going to be an easy journey,” my doctor warned gently. “You’re going to feel worse before you get better.”

I nodded and listened as he explained what he meant, but I didn’t care. All I could hear were those words: “You’re going to get better, you’re going to get better.”

* * *

I should have listened to my doctor. Or at least, tried to understand what he was telling me. But I was so eager to start medication, so eager to get betterto get my life backI didn’t care to consider what he meant by “worse.”

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I’d learned all about the Jarisch-Herxheimer reaction—where the Lyme bacteria release toxins during die-off that cause an inflammatory response, worsening symptoms—during my initial research of Lyme disease. But I didn’t fully realize what that meant.

The herx reactions started almost immediately after I began my cocktail of antibiotics. Where before the fatigue made it impossible to exert energy for long, now I was sleeping 18 hours or more a day, too tired to even lift my head from the pillow. Where the joint pain and muscle aches in my legs were once barely tolerable, now I woke up crying in the middle of the night, clinging to the walls as I made my way to the Epsom salt bath because I could barely walk. Where the physical sensations were unbearable, the neurological and psychological symptoms became tortuous.

My memory seemed to float away like dandelion seeds on the wind. I couldn’t remember the words for postage stamps (“that thing you put on envelopes”) or doorknobs (“you know, that thing you use to open a door”). When I saw my best friend in the grocery store parking lot, I thought she looked vaguely familiar, but I couldn’t remember her name, never mind what she meant to me. When I read, large passages of text blurred into blocks of letters that didn’t make sense, like a foreign language I’d never learned; I remembered what a stop sign meant only after I was through the (thankfully deserted) intersection.

It only worsened.

Depression turned to desperation. Anxiety became paranoia.

I was afraid to fall asleep, the nightmares becoming so vivid. I couldn’t tell the difference between what was real and what was just a dream, and I spent half the morning trying to calm my racing heart and remind myself that I was real and the rest was only a figment of my imagination. Anxiety poured into my waking life. On the rare day I was able to make it into work, I stood huddled in a corner of the elevator, frozen by inexplicable, irrational fear when a kindly-looking man stepped in after me. At night, every creak and groan of the house sent me into a panic. I had my dog, who’s always been quick to alert me whenever someone so much as passes on the other side of the street, but there wasn’t anything he could do to dispel the fear that paralyzed me.

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The knowledge that another unavoidable herx cycle was just over the horizon kept me suspended in anxiety. As the days and weeks passed, I kept reminding myself that I was killing the germs, that I was, in fact, getting better. It was cold comfort, but I was grasping for comfort wherever I could.

For six months, I fought through the deluge of symptoms each herx brought on. I tried to calm my mind through meditation and distractions. I took Epsom salt baths twice a day, and I altered my diet according to the best detox methods. Eventually, the pain began to ease and the fatigue let up. Slowly, words returnedthere when I called for them—and though the nightmares lingered when I woke in the morning, I knew they were just fading dreams.

* * *

It took six months for those heavy herx reactions to abate. Even now, nearly five years and one relapse later, it’s hard to think about how I ever got through those days. When I relapsed, that same fear plagued me once again. I wondered if it would be that bad again, wondered if I could survive it a second time.

It was. And I did.

My herxes now seem mild in comparison: a few days recovering in bed, some muscle aches that are soothed with baths, words that still don’t come easily but aren’t lost completely. I recognize it now as the price to pay for eradicating the germs from the body—germs that desperately try to cling to their host with everything they’ve got, the herxes serving as one last moment of triumph, begging us to give up and give in.

We’re stronger than that. We’re stronger than the Lyme.

Looking back at what I went through those first six months, I’m reminded how brave we are for enduring such affliction, with only the scant knowledge that we’re getting better despite the pain to keep us going.

“It’s not going to be an easy journey,” I can still hear my doctor saying.

No. But we’ll be braver for it.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Falling Back: It’s Not Real

by Jennifer Crystal

Changing clocks, Lyme disease, and Herxing

 

Twice a year I dread changing the clocks. Even in spring when extra daylight heralds warmer, brighter days, I know the shift will cause a dark period for me. It’s worse in autumn when twilight comes so early. The time change is an adjustment for everyone, but for Lymies, it can upset our already unstable circadian rhythms, causing sleep disturbances and an uptick of neurological and physical symptoms.

Twice a year I have to remind myself, it’s not real.

Of course, the time change is real. The loss or gain of an hour is real. The symptoms I experience are real, as are the frustration and anxiety that often accompany them. But they are not representative of a normal, “real” period for me, and that can be hard to remember when I’m in the throes of a flare-up.

Luckily, I have friends to remind me. One friend in particular taught me this important lesson years ago when I was in the midst of a Herxheimer reaction and absolutely beside myself. “Herxing” is when antibiotics kill bacteria faster than your body can eliminate them, causing you to feel worse before better. A body riddled with both live and dead bugs is a sick body indeed. When those active and slayed spirochetes are also in your brain, the situation goes from awful to unbearable. In that space, it’s hard to see what’s really going on. You need someone to say, “It’s not you; it’s a bug in your brain,” as one support group leader told me. Or you need a friend to tell you, “It’s not real.”

I remember sobbing to that friend on the phone as I lay twisted in my bed, rocking back and forth and wrapping my arms around myself. “I’m never going to get better,” I sputtered. “This is the worst I’ve ever felt. I’m only getting worse. I can’t sleep and my brain is racing and I’m too exhausted to even breathe and everything hurts and I can’t sleep and…”

“Shh,” my friend soothed. “It’s not real.”

This was an empathetic friend, so I knew she didn’t mean “it’s all in your head.” Instead of boiling over with anger, I paused in my tirade.

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I was months into treatment, and my friend had been through these ups and downs with me. That meant she knew the ups had existed before and would again. “This is just a terrible period you’re going through,” she said, “but it’s not really how you usually feel. I know you always feel sick. But this is especially bad, and it is going to pass. Your body has worked through this process before, and it will again.”

I took a deep breath. “You really think so? What if my antibiotics aren’t working and I need to switch them up?”

Ever the diplomatic problem-solver, my friend said, “How about this. How about you give yourself a week to let these symptoms settle out. If you’re feeling worse in a week, then talk to your doctor about maybe switching things up. But give yourself the time to see if these symptoms are your new real.”

Of course, she was right. The flare up wasn’t my new real. Within a week the Herxheimer reaction had settled down. I wasn’t feeling great, but I was no longer ready to jump off the deep end. My exhaustion had moved from excruciating to debilitating, which for me was normal. The insomnia had calmed down a few notches, and I’d gotten some sleep. I was back on an upswing, heading to my regular normal and not long after to an even better version of “real”.

The autumn clock change causes the same type of literal fall back I experienced during that Herxheimer reaction. Now that I am in remission, the resurgence of symptoms is thankfully not that bad, but it still makes me panic. It’s easy for to slip into a state of, “Oh no! My sleep is off! I’m so tired! I’m so irritable! I’m relapsing!”

I’m not. By next week, it’ll undoubtedly get better, just as it has every time I’ve had an upset from stress or from travel. If you are struggling with the clock change, let me be the friend to tell you, “It’s not real.” This too shall pass.


 

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com