Lately I’ve been talking to a lot of people who are sick; I think they don’t relate because I already have a diagnosis. I went 8 years undiagnosable (no – it’s not a word, but I like it and for the sake of today’s discussion, I’m gonna claim it). Below is a chart of what those 8 years looked like. It looks simple – but believe me, my symptoms were anything but.
I specifically remember being bitten by 2 ticks. I was totally grossed out, but not extremely concerned. I knew that if I got a bullseye rash, I needed to see a doctor. But I didn’t get a rash.
Not long after, I got sick – very sick. I had a severe respiratory infection in my lungs and throat. The doctor gave me antibiotics and I began to feel better. The thought never crossed my mind that maybe this was Lyme disease.
A few days later I developed extreme back pain. It was so bad that all I could do was lay flat on the floor for weeks. (I know now that I had a Jarisch-Herxheimer reaction*, but at the time, the symptoms seemed unrelated). In the coming years, I had a multitude of symptoms – severe fatigue, weakness, achiness, neck pain, allergies, sleep issues, chronic bronchitis, digestive issues, rashes, anxiety attacks, chest pain. Symptoms Chart (lymedisease.org)
Doctors didn’t look at the symptoms as being related – they just treated whatever issue I had at that particular moment. And then they said things like:
- You’re depressed – you need meds
- You have chronic fatigue – there’s nothing we can do
- It’s all in your head – If you imagine yourself feeling better, you will
- You need to exercise more – just push thru the pain
- Let’s address one issue at a time – let’s start you on beta blockers for your headaches and we will address the next symptom the next time you come in
- Get a proper bra fitting (yeah, that one is by far my favorite – I can laugh at it now, but at the time I wanted to punch her in the throat)
I have been to the ER at least twice a year for bronchitis, severe back pain or migraine like headaches. During 2013 I went 9 times.
One of the scariest and most frustrating points was December 16, 2013. I woke up in the middle of the night with severe chest pain and I felt like I couldn’t catch my breath. We went to the ER – it looked like a heart attack with elevated enzymes and flipped t-waves. I was admitted and we ran every test possible with no conclusive diagnosis. Yep – still undiagnosable.
I went to Stanford hoping the best of the best would be able to figure out what was wrong with me. I saw a dozen different specialists only to end up being… undiagnosable.
Knowing you are very sick and not being able to find help anywhere in the medical community is a horrible feeling. You feel crazy. You begin to think that everyone feels this way, but you are just a wimp. You cry. You scream. You beg for help. And it doesn’t come.
If you are reading this and any of it sounds familiar, if you are feeling undiagnosable, please consider that you may have Lyme disease. Fewer than 50% recall a tick bite. Fewer than 50% recall a rash.
Feel encouraged to contact me or learn more at http://www.lymedisease.org
* Jarisch-Herxheimer is a reaction to toxins released by bacteria when they are killed by antibiotics. Symptoms can include pain, headache, digestive issues, heart palpitations, and so much more.