A story from “Robin”:
After a hospitalization a little over a year ago, I started looking into wholistic medicine.
At the age of 23, I already had chronic migraines that landed me in the ER every two weeks, chronic kidney issues, a TIA [Transient Ischemic Attack aka mini-stroke], and what the doctors thought was fibromyalgia but was later diagnosed as EDS Type II.
After my TIA, I was desperate for answers. I went to a wholistic doctor who started telling me about Lyme disease and told me that’s what I had. (No blood work mind you, only an “energy level test.”)
Thankfully, I’m not an idiot. When the wholistic heath person was explaining that a significant portion of Lyme disease tests come back negative when they were actually positive, I started asking questions. I literally asked – how do you know they were false negatives? She wasn’t able to answer any of my questions.
Regardless, I left the office convinced I had Lyme disease. (Okay, maybe I am an idiot sometimes.)
But, I started reading about it and the symptoms. My mom is an ER doctor, and she and I talked to my neurologist as well as her doctor friends all at the hospital. They were all like – that’s not a thing. If the Lyme disease test is negative, you don’t have it.
Anyway I started this long in depth look at the “research” behind the claim that you could have Lyme disease without the rash or a positive test.
Literally – science doesn’t support the claim of false negatives for Lyme. (Yes there are some exceptions for getting tested right after you contact it.)
All this to say, I am continuously frustrated by claims that you can have Lyme when the doctors say you don’t. Like that isn’t a thing. UGH.
PS – medical professionals who, you know, graduated from medical school confirmed I don’t have Lyme disease.