by Jennifer Crystal
Being a Lyme-literate patient doesn’t mean you’re a Lyme-literate doctor. It’s important to know the difference.
Remember the old TV ad where the actor says, “I’m not a doctor, but I sometimes play one on TV”? Well, I’m not a doctor either, but sometimes I feel like I play one in real life.
I’ve become so well-versed in tick-borne diseases that I can distinguish between symptoms of Lyme and their co-infections; explain in scientific detail the issues with testing; talk biofilms and inflammatory cytokines and Herxheimer reactions. I have explained to actual doctors what it means when Lyme crosses the blood-brain barrier, why spirochetes evade antibiotics and how tick-borne illnesses affect acute infections. I know which blood tests I need to be ordered every month, and I can interpret the results.
I am Lyme-literate. But I am not a doctor. It’s important to remember the difference.
Anyone who has suffered from an illness for an extended period of time becomes knowledgeable about it. It’s a natural consequence of spending so much time in doctor’s offices and in bed. You get to know your symptoms—and the reasons behind them—because you’re living them first-hand. I consider this a positive effect of my illnesses, because I’m an informed healthcare consumer who can work with my doctors to make good decisions for my health. Moreover, I can help spread Lyme literacy by teaching others what I’ve learned.
The downside to this wisdom, though, is that we can start to view everything through the lens of our particular illness. Whenever someone tells me they have a rash, or flu-like symptoms, or idiopathic headaches, I immediately wonder, Could they have Lyme? We Lyme patients all know someone, either personally or in the public eye, who presents with what seem like Lyme symptoms, and we are sometimes too quick to share our opinion of the situation.
These people may very well have Lyme or some other tick-borne infection. I’ve had friends show me photos of bullseye rashes, or tell me stories of symptoms, and I’ve been able to point them to a Lyme-Literate Medical Doctor (LLMD) who has accurately diagnosed them with the disease I could only, as a non-doctor, suspect they had. It’s crucial for me to remember though that my role in that patient’s journey is simply to inform and where possible guide. Only an LLMD can make an actual diagnosis.
When one starts making blanket statements like “Oh you definitely have Lyme” or “That person doesn’t have Parkinson’s; it’s actually Lyme” one runs the risk of feeding into Lyme-related frenzy. Someone who is new to Lyme recently asked whether LLMDs also feed that frenzy.
“Don’t they all just say everything is Lyme?” she asked me.
Well, no, they do not. A good LLMD will look at both test results and a clinical evaluation to assess whether a person is suffering from tick-borne illnesses or from something else, be it Parkinson’s, multiple sclerosis, or possibly an autoimmune disorder. A knowledgeable LLMD remembers his or her Hippocratic Oath: to admit when they don’t know, and to do no harm.
Lyme patients must do the same. It’s imperative that we help spread Lyme literacy. But we must tread carefully between offering educated advice and playing a role we’re not qualified to fill. Our illnesses are real. Let’s therefore stay true to our real-life duty as Lyme literate citizens: to help educate through our insight and experience, without trying to play the LLMD.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]