Lyme Log: What IS This Herx Thing?

What exactly is this herx and herxing I'm always talking about?

Last night, as I had a quick chat with my friend, Marla, and when the topic came up we both realized I had better just blog it baby!

Now is the perfect time to explain to you what this is, as I have the term on my mind a lot lately in anticipation of my new treatment which starts on Friday. I'm wondering how badly I will herx.

So here it is: Herx and herxing are just lingo or slang used by us Lymies in place of a much bigger term. I'm going to give a couple of definitions from my handy little book Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment.

The Jarish-Herxheimer Reaction: Also called the Herxheimer Reaction. This typically refers to an exacerbation of symptoms or new onset of symptoms shortly after starting antibiotic therapy due to a flaring of the immune system in response to the killing of the spirochetes.

Now, I guess you'll be saying, "And what's a spirochete?"

Spirochete: A type of bacteria with a slender spiral shape.

Okay, are you following so far? Or have you fallen asleep already because it's still Monday and this is just too much for a Monday, for crying out loud!

Lyme itself is a bacteria shaped this way, so we often speak of the Lyme spirochete.

Now, a little bit more about a Herx and what happens to my poor body when I give it antibiotics. I really love this explanation from the book:

Many Lyme patients who are in the early disseminated stage and beyond will, once placed on antibiotics, experience a period of worsening symptoms--sometimes dramatically--soon after the antibiotic regimen has begun. This is called the Jarish-Herxheimer reaction and is not only to be expected but is actually a good sign that the drug is hitting its target.

. . . the Herxheimer reaction (as it is commonly called) occurs when the spirochete, attacked by the drug, gives off toxins and causes the immune system to overreact. It's as though a bomb were dropped on the spirochete, breaking it into ten pieces. Suddenly the body has to fight ten times as hard for a short period of time to eliminate it. There may be varying degrees of Herxheimer, with additional rashes, headaches, chills, fevers, and lowered blog pressure. This is a normal and expected reaction.

Got it? :)

For me, even baby, baby doses of antibiotics cause me to become very sick, which has been one of the signs that has kept us believing that I do indeed have Lyme, because other folks would not react this way to a small dose of an antibiotic. Think about how you take antibiotics for a sinus infection or strep throat and do not have a Herxheimer reaction.

Unfortunately, because my Lyme disease was left untreated and undiscovered for so long my body is like a factory for the Lyme spirochete. So, those bombs going off in my body? Well, that description couldn't be more right on.

Bottom line: I have to feel worse in order to (hopefully) feel better. That's the nature of the Lyme beast. That's what makes enduring the treatment so difficult--knowing how sick I will feel and having no idea how long I will have to do this before I see significant results (if ever). It becomes not only a physical battle but an emotional and spirtual one as well.

Because my Lyme Disease has manifested as Autonomic Nervous System dysfunction, my herxes tend to be filled with an exacerbation of all of the ANS symptoms I experience on a daily basis, such as pounding heart, tachycardia, sweats, shakes, nausea, tremulousness, shortness of breath/air hunger, near fainting and an inability to be upright at all.

I also experience extreme malaise, fatigue, muscle and joint pain, night sweats, etc. Sometimes I am so exhausted that I do sleep, while other times I feel too sick to sleep. Activities that are already a challenge for me such as being on the computer, concentrating, watching TV or listening to a book on CD become more difficult or impossible. Sometimes the most I can do to get through is listen to some quiet, soothing music. I am also always a beautiful shade of ghostly white, but when I'm really sick my pallor changes to a nice ashen color! Beautiful!

So what exactly is malaise?

Malaise: A feeling of general discomfort or uneasiness, an out-of sorts feeling, often the first indication of an infection or other disease.

The difficult balance is to treat the Lyme disease aggressively enough to 'beat' the spirochetes, but not to make me so sick that I end up in the ER calling 911 like I did the first time I tried antibiotics and increased too quickly! It's been an extremely difficult balance to strike!

I hope this helps clear up some of the confusion. These two illnesses of mine are a complicated and crazy world! In the past few months I have heard the words: Complex, Complicated, and Challenging to describe my case more times than I care to count! And those three C's aren't for taking my CCCs to become a speech pathologist, Marla! :)

I also want to clarify one point that seems to cause confusion (especially to for Dad!). We are operating under the assumption that my Autonomic Nervous System Dysfunction was/is caused by Chronic Lyme Disease.

This is why, over the past couple of years my treatment has focused more on antibiotics than finding medications to treat the ANS problems. We are trying as much as possible to control the ANS problems, but since most available treatments have failed for me we hope that as we kill off the Lyme raging in my body, improvement in ANS symptoms will follow.

That's the plan that we're sticking with for now. And now you know all the lingo.

Congratulations! You are now an expert in Lyme and ANS Dysfunction! (Well, not quite, but you're on your way!)

Blessings and Happy Monday!

Emily