Lyme Files: Herxing

If someone has or had Lyme, a funny thing to say is, “Hey, you ever herx?”

And we laugh. And laugh. And cry. And choke on our own spit. And they say, "Who are you, again? Why were you asking about turtle flower dragon puff? Hi."

Does this herxing make me look sick?

It’s not funny at all, actually. Only in the way when stuff is really, really bad it’s so ridiculous and you are like lolz, kill me! LOLZ!

After suffering all the miserable effects of being sick with tick-borne illnesses, after being told a million times how sad, lazy, horrible, useless, attention-seeking and crazy you are. . .you get hooked up for your first treatment.

Sometimes that’s IV, as it was in my case, or oral medications.

(Slight lie, the few days before I got my PICC in, I was on strong oral antibiotics).

For a moment, you get high. I think you get high. I never took drugs that weren't perscribed -

Funny story: When I was on oral antibiotics, they were they huge horse-pill white, chalky things. I took two a day. Well, I forgot what I took on the second day so I saw that the bottle had, let's say, 30 pills. Then I was like "I have been on these for one day" so I spilled out all the pills and counted. But, I normally forgot what I was counting well before 30. Or how many days I had been taking them. Or how many I needed. Or how to subtract. Needless to say, I took four or something in one day. My Dad finally counted them out for me. That's neuro-Lyme.

Anyhow, then someone tells you about the Jarisch–Herxheimer Reaction. Hopefully before your first round of treatment. If you can remember.

The official definition from Wiki states:

The Jarisch–Herxheimer reaction is a reaction to endotoxin-like products released by the death of harmful microorganisms within the body during antibiotic treatment.

What happens is you flood your system with the stuff that is going to kill the bacteria or parasites or fungus. And they die! Victory!

Now your body is flooded with dead, toxic bits and pieces of bacteria, parasites and fungus. Some of it is just like junk in your body, some of it legit turns into arsenic and you can trigger a heavy mental test.

Some of the stuff goes cystic, which means you can't kill them. They are just these balls of protein that your body can't break down and the medication can't get into to kill. They can stay like this for days to years. In fact, in autopsies of rats, they were found in the liver still waiting to come out.

Do I look sick yet?

The more die-off, the worse you are going to feel and the harder your body has to work to get all the dead junk out.

You just feel worse. If you didn't feel bad, you will be bedridden to vomiting to full on mental breakdown. Sometimes I felt drunk - and I know some people said that didn't sound too bad, but, just imaging feeling horrible and the world is spinning 24/7.

During a herx is when your kidneys, spleen and liver can fail because they are under attack by the bad stuff AND now have to work harder to get these additional toxins from your system. Don't worry - there are weekly or bi-weekly blood tests for this. I was told to never let anyone take blood from my PICC because if you did it wrong, it could collapse or clot. So, that's extra needles for me.

Herxing always happens. No one can say they have not felt it.

That includes you!

In fact, it happens when you are sick with something - let's say strep throat - and you take medication. You hit that point where you feel the worst ever and then you start to feel better. You normally feel worse after that first dose or so because you are fighting and infection and a clean-up. Now, just imagine it's so bad your body is dying faster than it was dying before.

I had puking mostly during the first round and due to specific medications  - I am a master of quiet puking. Since I wasn't into eating a lot, I also dry-heaved. I'm sure someone who knew me has seen me cough, gag and heave a few times. That's a herx reaction.

I was dizzy and my body felt like it weight 500 tons. I lost my fine motor control - I was so frustrated at the computer because I couldn't get the mouse in the right place. I also got very itchy and felt the darkest, deepest, soul-crushing weight of completely despair and inability to function.

Herxing is not just physical - it is emotional. You have to learn to divide yourself from it. That's why one time I was puking (like, puke from my nose, puking) after the most burning, watery diarrhea I ever had and sobbing under this unmanageable weight of emotional annihilation and I got a whiff of the toilet freshener I had just put in the bowl that morning as I was flushing, and I yelled to my boyfriend at the time, "This is the best smelling toilet ever!"

He told me, "That's great, just let me know when you want to go to the hospital."

Lymies do not go to the hospital. We don't get treatment there, we get lectures about why we are doing this to ourselves. We are told how we feel bad because long-term antibiotics are doing it and we need to stop this nonsense and just get out more. I mean, it is the antibiotics doing it and it is in my head.

*Two thumbs up medical community*

Some Lymies have seizures, pass out or lose control of their bowels. You never know what is going to be the worst of the herx - it's a magical surprise that can happen at anytime on treatment.


Remember when I wrote sometime the stuff goes cystic? You can herx when it comes out and you still have medication in your system.

It's random.

This one time, I'm at work, trying to remember what a pencil was (I worked at a great and oddly very forgiving place) and BAM. . .time to puke and debate committing suicide.

Might have been a few hours before that I took a pill or infusion. Hopefully not a pill. I choked my puke down if it was a pill - I did know how long it had to stay in my tummy.

In retrospect - I'm pretty sure the drug was in my system when I felt like puking. Revelations come daily for years after, folks.

Choice of Lyme
Herxing is always horrible, it makes you feel worse than you ever thought you can feel AND it can be deadly. Welcome to treatment. We hope you survive.

The statement, “It’s going to get worse before it gets better” might have been invented by someone herxing. Every treatment, every upping of meds, every new med will result in you being worse than you were before – which was already the worse you ever felt.

It can be amazing what you can survive. And that's not always a positive thought.

This is why sometimes Lymies are chronic by choice. Your body may not be able to handle the die-off, it might lead to organ failure or other stuff.

One of the reasons the CDC seems to be hanging on to the outdated guidelines is because treatment can be really bad and it's better to die slowly than risk hurting more. Then they also stated 30 days of antibiotics - TOPS - cures Lyme and you can't get any other infections and any symptoms after that is just in your head because you can't have any more infection.

You know, like when you have cancer and get chemo underground because chemo can be really bad and people should have to go through that. And, by the way, chronic cancer doesn't exist. You just need a pill and to think yourself better.

Nothing against people with cancer - it just a statement that is so weird when you put cancer in there. But when you put "Lyme" or "tick-borne illness" it sounds. . .equally ridiculous. No one would ever tell a cancer patient s/he cannot get treatment because the type of cancer doesn't exist in the country or state the person is from.

Anyhow. you might not be able to handle it as a person - your ability as a human to cope with the horror and misery alone without the ability to connect to anyone or talk about it can be a lot.

I was given the choice more than once to continue treatment or just manage the symptoms and make peace with having creatures and parasites living in my body.

You don't get take back the choice - because if you start and stop too many times, your parasites will become immune to the drugs, then you will have NO choice but to manage symptoms.

My choice was to treat. Not because I was heroic or brave or incredible or a warrior - it was simply because I knew no other life than horror and pain. And I hoped this round would kill me, 'cause I sure felt really close to dying.

I herxed for five years.

It Always Gets Too Bad
Herxing hit me bad a few times. I took some weekends off from treatment under doctor's orders. I also had to stop treatments a few times for a week or month or so to give my organs time to process and heal.

Minutes before herxing

For oral medications, I had 20-30 minutes. I would yell to my coworkers, “Took a pill, you got 20 minutes of me being competent.” Oral medical mattered less when I was on IV stuff. I was on both for a while – for different things. 

For IV, it was sometimes a feeling of awesomeness followed by the herx.  

My thyroid stopped working twice - I just took more medications to replace what it wasn't doing so I could continue treatment.

My immune system crashed once - dropping down to almost non-functioning.

My spleen almost exploded. I don't know how that would feel or what that would look like, but, I had to take extra medications to protect my spleen and it swelled and rubbed on my ribs.

I took medication with chocolate, because I already hated it. I still can't really handle peanut butter.

If only I looked as sick as this all sound, huh? Sadly, I did not look sick so it made everything I went through easier for people to deal with and discount.