Lyme 101: Lyme Terms



Your favorite Lyme blogger is back at it again, this time with a SUPER FUN LIST of Lyme vocabulary! Get. Excited.

But seriously. I've had a bunch of people ask me (and rightfully so) what certain terms mean that I use all the time. We do throw words out a lot like herx, bart, cowden, klinghardt, etc. and easily forget to really define these terms to people who don't use them as much. :) 


So behold: Lyme 101.

Here's just a short list to get you started and to help understand some basic terms behind Lyme. And since over 3 million people in the US have Lyme, odds are you'll want to refer to this list for other people in your life. And believe me when I say that there is no better way to make a Lyme patient feel loved than to understand the terms and what they're going through.


1. Herxing: This is short for Herxheimer Reaction. Arguably the most common word you'll hear from Lyme patients. Basically, it means when you take any antibiotics or antimicrobial, and your body has a reaction to the toxins dying off quickly because it can't detox quickly enough. Often equated to chemotherapy for clients. 

The symptoms include flu-like symptoms, fever, rapid heartbeat, migraines, hot flashes, etc. This essentially happens when any Lyme patient takes even a small dosage of an antibiotic, which is oddly a good thing because it means it's working.  

Most Lyme patients can usually tell the difference between a Herx reaction and relapse because the symptoms are different, and it varies with each patient. (Like, for me, I know it's a Herx reaction when it happens a certain amount of time after I take the medicine, I get a headache in a very specific place, and I get heart palpitations. And basically feel like I've been hit by a truck.) 



2. IDSA: The Infectious Diseases Society of America. These. people. are. bad. See previous post. Private group that CDC chooses to follow, and they say that persistent Lyme Disease doesn't exist despite 700 peer-reviewed articles in medical journals. Even the National Guidelines Clearinghouse (NGC) took off the IDSA guidelines a couple weeks ago.  (Huge win.) Currently getting a bill passed in the Senate that calls for a federal investigation of the IDSA. 

From our friends at the kind Just gonna leave this here


3. ILADS: International Lyme and Associated Diseases Society: The. Good. Guys. These doctors put their lives and practices on the line to treat the sickest of the sick, and they're always up on the latest Lyme research. Association of LLMDs, basically. See below.  

BFF. ILADS Directors. I'm also ashamed to admit how much time I spent on this.




4. LLMD: Lyme-literate doctor. Aka, heroes. I'd say, ballpark, less than 1% of doctors are Lyme-literate. When you find one, it's like the lottery. Most patients have to fly or drive long distances to see one because they're rare. Probably the second most frequently used term you'll hear in the Lyme community. "Who's your LLMD? Is he a part of ILADS?" Typical convo.


5. Detox: Not like your Hollywood version of detoxing with juices. We have to detox on the REG to avoid awful Herx reactions (see how this all comes together?!). This includes: epsom salt baths, lymphatic drainage, supplements and herbs (like glutathione), and a bunch of other stuff that I won't get into now. Just know detoxing is super importante. 


6. POTS: The heart condition that a BUNCH of girls with Lyme have that makes your heart beat crazy fast when standing up therefore making you pass out. AKA Postural Orthopedic Tachychardia Syndrome. People will use it in the context of: "I'm feeling all POTSy today. Gotta lay down." It's what I have. Once we get rid of Lyme it'll probably subside. Also seen with the hashtag #DropItLikeItsPOTS. 

7. Doxy: Short for Doxycycline, the most commonly prescribed antibiotic for Lyme disease and a few of its co-infections. Most people are on it. Including me. Cue lots of probiotics.




8. Co-infections: Most people don't have just the Lyme infection, it's the co-infections that can present the most concerning symptoms.  Co-infections include: Bartonella (or "Bart"), Babesia, Tularemia, etc. (All of which I have.) 

I think that's enough for now and I am also tired. We'll have a part 2 at some point because I'm sure I've forgotten important terms between my frequent snack breaks.