The Herx

A Jarisch-Herxheimer reaction (aka a "herx") is, to put it simply, a miserable medical experience. But it's also a very good thing.

Herxing is specific to very few diseases, including syphilis and Lyme disease, which are both spirochetal infections. As I mentioned in my previous post, spirochetes are a type of microscopic organism that look like little spirals.

They are smart buggers, adapting to antibiotics and changes in your body.

It's hard to kill them, but it's pretty much the only way you can get better.

So a herx is what happens when you actually do start to kill them off with antibiotics. I'll explain how it works, but for a more detailed, scientific explanation, please either check it out here or here. So:

1. The antibiotics (if you're taking the right type or types, in the right dose, at the right times of day) start killing the spirochetes. This is good. But if the antibiotics are working particularly well, the spirochetes start to die off very quickly.

2. As they die, their cell walls burst, and the contents spill out into your body. Remember, spirochetes are living organisms--though I can't say I feel bad for killing them.

3. A herx happens if enough dying or dead spirochete material floods into your system, leading to an inflammatory immune response.

4. While you may have an acute, life-threatening allergic response, or a fever that rises quickly (I almost died this way, in 2003), it is more likely that you will just feel awful for a day or a few days.

Herxes come on quickly or take a while to appear, but either way, you will probably feel a worsening of the Lyme symptoms you already have. According to Pam Dodd's Lyme Disease Blog, symptoms could include:

• fever
• sweating and chills
• rapid heart rate or palpitations
• shortness of breath
• muscle and joint aches and pains
• headache
• brain fog
• insomnia
• swollen glands
• ringing in the ears
• sinusitis
• itching
• digestive issues
• unstable emotions
• general feeling of sluggishness

For me, when I'm not feverish, I'm experiencing unbelievable pain. That's how I know the antibiotics are working.

What can you do? You can eat well, drink a ton of water, take your vitamins, and get sleep. Take baths and drink tea. And call your doctor--he or she may want to reduce your dose or have you take a "drug holiday" until the herx has passed.

But remember--it will get better. And if you don't have a herx, the antibiotics are still probably doing their job. It's just one more weird, hardly-understood thing about Lyme disease.

The Life Cycle of the Lyme Spirochete

My doctor explained to me that there are three stages in the Bb organism’s life:
1. Spirochete. This is when the spirochete (again, a coil), just kind of rides your body’s metro system, as a presence in the blood vessels. My understanding is that this is how the infection begins, though the stage is not exclusive to early infection.

Antibiotics such as doxycycline and minocycline are best used to treat the Lyme organism in this form.

2. Cell-wall-deficient form. My doctor told me that once you start using an antibiotic that is effective against the spirochete form, Bb sheds its cell wall and retreats into your body cells—your neurons, your muscle cells, et cetera. Now those antibiotics can’t penetrate your cell’s membranes to get at the Bb. The presence of Bb in your cells is what commonly causes the wide array of symptoms you might experience. Bb is especially drawn to fatty cells, like the glial cells in your nervous system, causing any number of psychiatric, cognitive, or neurodegenerative problems. In your muscle cells, it might cause pain or weakness, for example.

My doc said the best antibiotic—and perhaps the only one—to penetrate the cells and kill the Bb is azithromycin, also known as z-pack.

Borrelia burgdorferi

I have a fantastic LLMD (Lyme-Literate Doctor) in Iowa, where I live. The doctor I was seeing before him lost his medical license (see video in preceding post) so I started seeing this doctor. He is very smart, and explains Lyme disease to me in a way no one else has before, and I want to share what I know with you.

Lyme disease is an infection by a spirochete known as Borrelia burgdorferi (Bb). A spirochete is an organism that looks like a spiral, a coiled spring. Syphilis is also a spirochetal infection, and in many ways, manifests similarly to Lyme.
The way to treat Lyme is to manage the symptoms while getting rid of the spirochete. To manage the symptoms, you might need any number of medications, since Lyme is known for its myriad presentations. For example, you will probably need medications to reduce your levels of pain. Some patients need medications for severe mood swings or cognitive deficits. You might need medications to manage cardiac problems, like blood pressure drugs. Or gastrointestinal support. On and on.

Each person’s Lyme disease is unique, with one aspect uniting all of us: symptoms come and go, they wax and wane, and many are not detectable with standard diagnostic testing. You can probably see what the challenge is here. With that type of symptomatic constellation, there are a whole lot of doctors who are going to think it’s in your head, a response to stress and not an actual disease.

Doctors are not perfect. They are people, biased and jaded like all of us.

The way to get rid of the spirochete is generally with the use of antibiotics. If you have Lyme disease that has become chronic, you’ll probably need antibiotics for months to years. Antibiotics can be unpleasant to take, for a few reasons. One is that they can bother your stomach a lot. Most antibiotics should be taken with a meal, but check with your pharmacist on this. Part of the reason they bother your stomach is because they eat up all the healthy organisms in your digestive tract, the ones that help you maintain a gastrointestinal homeostasis, so to speak. They can also do the same to women’s vaginas, leading to yeast infections. To deal with either of these problems, you should take a probiotic such as acidophilus, available in the vitamins section.
If you’re on intravenous (IV) antibiotics, you have to deal with a PICC line, a port in your chest, or some other way of getting the antibiotics into your blood once or twice a day. I have had a PICC line, and I did not enjoy it, because I found it a little scary to be injecting medicine directly into my blood stream, because it was very hard to shower with the PICC line (it should never get wet), and because I didn't know what to do with the line that dangled down my arm.
All the same, IV antibiotics can work very well, sometimes when oral antibiotics do not.

One other problem you run into with antibiotics is the Jarisch-Herxheimer reaction, colloquially known as a “Herx.” This is a central issue to Lyme disease, and I'll post on it soon.

Well, kids, this has been Lyme disease 101. I will continue to make posts that are educational, as well as very biased posts on the way I see the Lyme disease controversy, and autobiographical posts, about my own experience with it. If you'd like to submit your own story to this blog, please click on the "Share Your Lyme Story" link above. And please, comment, follow, and share this blog.

This is an extremely informative short video on the conspiracy theory behind why Lyme disease is being under-diagnosed and under-treated. Please watch this.

IDSA Propaganda

IDSA-What Is Lyme Disease?

This video, posted on the IDSA website, is a bunch of lies based on half-truths. What they’re basically saying is, Lyme is no big deal. Don’t pay any attention to it. While it is true that a patient can be quickly and appropriately treated with Lyme disease and get better, it is not what always, or even usually happens. And the story told by that airhead actress about how she was completely cured by Day 3? Total BS. Or, maybe a person rarely experiences that. And maybe some patients have their Lyme caught so quickly they never even have symptoms at all. But the IDSA wants you to think her so-called testimony is representative of all sane people bitten and infected by ticks. It’s bunk, okay?

My Story

This is me as a baby, healthy as anything, unbitten.

To become seriously ill at age ten is to have your entire conception of the world inverted and distorted, sharpened into prickly shards and bent around shadowed corners. Or at least this is true of any malady that defies diagnosis and/or clear boundaries between the imagination and the body. Surely it is true of hard-to-detect genetic disorders, mental illnesses, and Lyme disease.

What I mean is that if a child is stricken with a disease that is confusing for adults in any way, the child cannot rely on herself to be certain of what is real, what is the truth. Unlike a grown-up who gets sick, a child has neither a healthy point of reference to compare new symptoms to, nor the confidence to defend herself against adults’ doubts about the reality of her symptoms.

I contracted Lyme disease in 1992, the summer before fifth grade, in New York. That July, everyone was getting bitten by ticks at the Bronx Zoo, where I attended a summer camp. Eleven years later, I met a woman in the parking lot of my infectious disease doctor’s office. As I leaned on my cane and sweated in the spring heat, she told me she had worked for the zoo in the summer of ‘92, and had contracted Lyme disease there. She was angry at the zoo, which I didn’t understand at the time, but now I think I do. You can’t be angry at a tick.

One evening my back itched terribly, and I scratched so incessantly that my mother asked me to lift my t-shirt. The next day, both of my parents took me to the dermatologist, to show him what was on my upper back: two raised, red bullseyes next to each other, connected by a puffy, angry arch. The doctor looked at my back through his magnifying lenses, which made his eyes loom large. It’s probably Lyme disease, he said, and the blood test supported it.

That past winter, I’d heard a news piece on the car radio about the dangers of an epidemic called Lyme disease. I’d assumed people got it by eating rotten limes, and now here it was, promising to make my summer both exciting and unpleasant.

The doctor prescribed an antibiotic not typically used for Lyme disease—I believe it was erythromycin—because the right one sometimes stained children’s teeth. I took it for two weeks and life continued, though I remember being disappointed in how quickly my share of summer drama had gone away. Except for a bad case of sun poisoning as a result of antibiotic-induced photosensitivity, my tangle with serious illness had not been serious at all. Chicken pox had felt far worse.

Age eleven: I’m having fainting spells, tremors, and wild tantrums.

Age thirteen: I’m suffering from manic episodes and transient and shifting aches and pains.

Age sixteen: I’m cooling my heels in an adolescent psych unit for the better part of a year.

Age seventeen: I’ve completely lost my flair for mathematics, I nod off without warning all the time, I alternate between intense depression and burning hyperactivity, and my body can handle neither medications nor vigorous exercise.

Age twenty-one: I’m in college in Upstate New York, and I’m burnt out from feeling bad. I feel so bad that I rarely leave my bed, I don’t go to classes, and I shake solipsistically for hours at a time.

I go back home to Long Island, to my parents’ house. It takes some battling to get them to listen to me, to my wheedling insistence that I am sick, not a hypochondriac as they came to believe over the years when medical tests yielded absolutely nothing. Then they rally themselves and my mother takes me to doctor after doctor, just like she did when I was in my early teens, except this time we are more demanding. We want the doctors’ attention.

One morning, my mother drives me into Queens to see a hematologist to rule out my internist’s half-baked suspicion that I have some atypical form of leukemia. The doctor and her assistant literally laugh me out of the office, and in the car, while I hiccup and dribble tears down my shirt, my mother berates me for “throwing a tantrum.” She is burnt out herself.

That afternoon, at a dermatologist in Manhattan, my mother displays some kind of regret for her earlier behavior by reciting my disturbing list of symptoms to the doctor. It is for my benefit really, to make me see how sorry she is, and how much she believes me. And even so, the doctor hears it all, believes me in some implicit way that still makes me reel when I recall it, and asks me if I’ve ever had Lyme disease.

Controversies

I never considered the fact that controversies could be like tornadoes, picking me up, spinning me around, setting me down somewhere new, disarrayed and disillusioned. And yet, this year alone, they have, several times.

There was the assault I was victim to in February, after which the perpetrator walked free (never arrested) because I suffer from a mood disorder that rendered me culpable, without credibility.

Or the fact that I am a lesbian making it very difficult, if not impossible to proceed with my relationship in the manner I’ve dreamed about all my life.

But the most afflicting controversy in my life, the one that has spurred me to create this blog, has been about Lyme disease—whether it is a quickly-treated illness, earmarked for an obscure, forgotten shelf in the library of one’s life, or whether it is the life-destroying, chronic ailment that many insist it is—not obscure, not forgotten, but the library itself, the old, crumbling bookshelves, the dark corners behind the stacks, the oppressive quiet of a bad, bad place to spend one’s days.

The truth of it is that I am quite sick, have almost always been sick, and if everyone could just stick to the facts of Lyme disease, no more, no less, I might be healthier, more successful, happier. This controversy has effectively ruined my life.

I seek the truth. Do you?