Hello bloggy world! I am back! What do normal people do when they haven’t been around for a while? Do an update post, right? But my update is that I’m stressing about the U.S. election result and I can’t write about it yet. So I’m just going to finish the post I was working on when I had to stop blogging because of my evil carpal tunnel/tendinitis relapse.
A little more more than a year into treatment I finally had the infamous Jarisch-Herxheimer reaction (when bacteria die during treatment and release toxins, causing assorted wretched symptoms). I had been hearing about herx this and herx that and wondering what everyone was talking about. Ignorance is bliss.
The antibiotic I was taking for my bartonella infection, azithromycin, stopped working. At least my doctor and I thought that was what had happened. I only have a clinical diagnosis of bartonella because the testing for humans at the time covered two strains, cat scratch fever (bartonella henselae) and trench fever (bartonella quintana). In contrast, the testing for cats is much more thorough. One cat test I saw covered more than six strains.
My doctor decided to switch me to another antibiotic, rifampin. He said we would “just give it a little try,” as it is known to be quite strong and I am “an oversensitive patient.” (I probably have mast cell disease, but finding a doctor for that seems to be even harder than finding a Lyme doctor.) In addition to many supposedly harmless side effects, rifampin can turn your pee a delightful nuclear Day-Glo orange. Rifampin also affects other body fluids, such as tears, and has been known to stain contact lenses. I wondered how long it would take for the lenses to turn orange and whether I would have to walk around with them that way.
During my first few days of rifampin, I thought I was going to die. I was in agony, I had headaches, I had hideous sound and light sensitivity, I was itchy, and I felt like a truck had run over me. I had such bad brain fog I got lost in Manhattan, which is not easy to do.
I wondered if I was having the famous herx reaction or if I was just allergic to the drug. I spent lots of time reading articles and posts like this one (thanks, Kimmiecakes Kicks Lyme) about how to tell a herx from an allergic reaction. The Lyme Internet Collective Brain gave me the definitive consensus that I was having a herx reaction. The Allergy Internet Collective Brain said it was drug sensitivity.
When I emailed my doctor with a list of about 30 symptoms, I got this wishy-washy answer.
“Dear Miss Diagnoses,
It can be really difficult to tell a herx from an allergic reaction (YA THINK?)
Perhaps you could take a day off from medications and see if you feel better.”
But for some reason, call it stupidity, I decided not to take his advice and give it another few days. And that’s when the giant round facial hives started.
I’ve had facial hives before, but these were different. They were BIG. They might’ve come from something other than the rifampin, because at that time I was traveling to and from the hospital visiting Difficult Elderly Parent (more about her later) and was spending a lot of time around industrial-strength hospital cleaners. When I emailed my doctor about the hives, he finally told me to stop the rifampin, mumbling something about not destroying the whole village to kill the terrorists. I never really thought of spirochetes as terrorists, but it works. But again, no politics! I am not writing about politics today! Nonono.
He switched me to an herbal antimicrobial and I had some of the same symptoms the rifampin gave me but in much milder form, and no hives. I came to the conclusion that I might have had both a herx and an allergic reaction. Eventually I became comfortable with the herbal antimicrobial, which of course meant it was time to stop it and take a different one. And it’s 2016 and I’m still taking herbal microbials for bartonella. I think they help. I’m slooooowly getting better. Better forward than backward and all that.
So if you wonder if you are having a herx or an allergic reaction, why narrow it down? It could be both! Fun times, right?
Yeah, so I did say I wasn’t going to talk politics, but many spoonies rely on Medicare, so please take a moment to sign this petition to save Medicare and prevent it from being turned into crappy vouchers! Thanks!