A story from “Sarah”:
I’m a reformed Lyme Warrior. Now it feels embarrassing to say. I’m not a warrior, just a person. To some degree I feel like the warrior or spoonie stuff is part of a coping mechanism, particularly for people that took a long time to get diagnosed and lost a lot of their sense of self along the way.
I was part of the Lyme warrior “Screw the CDC, fight The Man” group briefly, but I was coming off 2 years being bedridden and had no friends left. I just wanted someone that “got” it and to feel like I still had a place in this world. But as I felt better it became clear that by calling myself a warrior, I was constantly drawing my thought process back to illness instead of celebrating moving forward and just feeling like a human again.
And I feel sad that I recently learned a whole heap of my diagnosis were in fact almost all caused by 1 thing and my Lyme* was most likely cleared up years ago. Not sad because I’m feeling tons better but sad that while I want to jump up and down and scream from the rooftops, there are people in my life that are still sick from it and it feels mean to be happy.
So maybe that’s why the spoonie culture and mentality often seems to focus more on the bad? It’s kind of a vicious cycle, people improve and don’t want to flaunt it or lose their new friends so they don’t say anything, or even pretend to feel worse than they do, but no one else knows that so all they see is that no one else is getting better. And if no one else is improving and you’re there to feel not alone…well, there you go.
I saw a LLMD one time only. After I left my appointment $1,000 poorer and with a giant sack of herbal supplements (before ANY of my test results had come back, mind you, not even a CBC), I got into the car, turned to my friend driving me, and said “they never even took my vitals”. I was beyond thunderstruck. Like, how do you overlook that?! holy effin christ. That was kind of a big red flag for me.
Down the road most of my ‘chronic Lyme’ symptoms went away almost overnight because they were actually caused by a food allergy. My chronic Lyme was cured, FOR FREE and with no herxing, by dietary changes. Ironically since my food allergy is to herbs, my gut instinct to run far away from the LLMD treatment plan was pretty right on. Imagine taking a tincture of oregano oil if you react to oregano. it must be working, I really must have Lyme because I’m herxing, this doctor is soooo smart (sarcasm)
GOD how many times I used to tell people I was herxing like it was something to be proud of. What an asshole I was. Stopping the “Lyme warrior” hogwash was almost as life changing as finding out I never had chronic Lyme in the first place.
I was told repeatedly my brain and muscle issues were permanent damage from having untreated Lyme for so long. I’d given up hope of improving because my doctors had given up. Turns out, most of the symptoms my doctors thought were from Lyme turned out to be a food allergy. The Lyme and Co* was actually successfully treated years ago (by my GP, not a fancy LLMD).
It’s scary how easy it is to assume symptoms are all from one condition and overlook for years that they’re from a different cause. Meanwhile people are pumping themselves with antibiotics, severely restrictive diets from inaccurate “allergy” tests, herbal supplements and all kinds of woo treatments and wondering why they are getting worse instead of better.
* Editor’s Note: It’s unclear whether Sarah had Lyme disease at all, but regardless, treatments from the “Lyme literate” would have been inappropriate.