To the YouTuber Who Called My Chronic Lyme Disease a 'Scam'

Dear Rebecca Watson,

The video you posted a mere 12 hours prior to my starting this letter to you has awakened a fire in me I never knew existed. This, for you anyway, is not a good thing.

You call a disease I have been fighting for 11 years a “scam.” Chronic Lyme disease is a very real, very expensive, very debilitating disease. You said the following:

“… generally, you find a tick or a bullseye rash left by the tick, you see a doctor, they may do a simple test for antibodies to confirm, and then you take antibiotics for two to three weeks. 200 mg of doxycycline per day for 3 weeks would be 42 pills, which would cost less than $50.”

Let’s break this down, shall we?

The Centers for Disease Control and Prevention (CDC) website claims 70% of the time you might see a bullseye rash (my own personal experience and the hundreds of people I’ve spoken to would argue this number is much smaller). However, it takes several days for this rash to form; in the beginning, it looks like a mosquito bite. Have you gone to the doctor for a mosquito bite? I doubt it. Do you know how long a tick can be attached before it transmits the Lyme spirochetes? (Do you even know what those are?)

Let’s assume you managed to be in that magical 70% who saw a bullseye. Great! Bad news, though; the current tests to confirm a diagnosis are hardly accurate within the first few weeks. So if you have the rash you will certainly get your “magic dose” of pills but for anyone who didn’t have or see a rash? Good luck getting help.

I had no rash. I saw 15 doctors (yes, that’s not an exaggeration) who told me a wide variety of things such as: multiple-sclerosis (MS), lupus, tumor in my thyroid, inner ear infection, bad vision… I’m gonna stop the list here because Lyme disease sometimes mimics other diseases. But I will say my favorite diagnosis was the couple of doctors to tell me (a fresh out of high school 18-year-old) it was all in my head and I was making it up for attention.

Really? Why would a formally healthy, very active, outgoing 18-year-old want to spend every waking hour either in bed or in a doctors’ office? Common sense would tell any rational person there’s got to be something else here.

But, no, that 18-year-old girl would sit in her room at night, afraid to fall asleep because nobody believed the severity of the issues. That 18-year-old girl prayed God would take her in her sleep so she wouldn’t have to suffer anymore. Nobody believed her anyway, so why continue living? That was no life to live.

Luckily for me, I had my mother. She never questioned my symptoms or my credibility and she is the only reason I am alive to tell this to you. We finally found a Lyme-literate medical doctor (LLMD) whose own daughter had to fight the same fight and who stopped at nothing to help me. I had been fighting for almost nine years by the time I saw this doctor. I went from a wheelchair to a cane to walking to driving (albeit not very far yet), but I will be damned if I let you spread this foul lie that chronic Lyme disease doesn’t exist.

As far as money goes? You question how anyone could have $20,000 in medical debt from this disease. That’s hilarious. Only recently did the CDC recognize that Lyme could persist after one round of antibiotics. Those brave doctors whose identities are spoken in code online for their protection go beyond the recommended guidelines to help everyone they can. Why? Because we are suffering. One round of treatment might work great for some people… but not all people. If you asked anyone with chronic Lyme if they would give $20k to be rid of this awful disease forever, they would offer you double just to be sure it’s gone for good. It took $10k for the first round or treatments to get me from not walking to back in college — half of what that little boy needs. Think of where he could be at my age.

I consider myself very blessed to be in my situation because I’ve known plenty of people who can’t afford treatments and have struggled in silence or (and more frequently than anyone would like to talk about) have taken their own lives. I’ve known people who haven’t had a support system and have had to advocate for themselves.

People like you, who go around spreading misinformation, are the reason we can’t get affordable treatment. People like you are the reason it has taken us this long to get where we are today. People like you need to educate yourselves before you go around making videos or posting articles that will set us back any further.

We have suffered far too long to be dragged down by the likes of you. We are warriors. Every day is a battle. We will continue to fight for a cure, affordable healthcare, education for medical professionals and awareness for everyone. We will fight or we will die trying.