People keep asking me, “What were your symptoms? How did you know you have Lyme disease?” To say “it’s complicated” is an understatement.

I was diagnosed with Lyme in 1997, when I was 18 or 19 years old. The diagnosis sounded so exotic and unusual that my ever-vigilant mother made a photocopy of my prescription–which she would find 18 years later in February 2015, after years of my fruitless pursuit of all manner of medical specialists–neurologists, a neuro-ophthalmologist, allergist, rheumatologist, orthopedic specialist, and their many expensive and sometimes painful tests, which included three MRIs, one tolerable and one nightmarish EMG/NCV study, EEGs, ECGs and EKGs that followed terrifying vertigo attacks, blood tests for hormones, CBC, blood sugar levels, HIV and other STDs, and just about everything else–including Lyme disease. (And not including two coinfections I ultimately found out I have: bartonella and babesia.) Anyway, after cluster headaches, double vision, temporary paralysis, other maddening nerve and joint pain, life-squashing fatigue, cognitive dysfunction, full-body stretch marks and countless other symptoms, I was ultimately diagnosed with “congenital” cataracts at age 33, a blurry right optic disc margin, hyperreflexia with clonus, idiopathic cluster headaches, and Meniere’s disease–all, I was told, with unknown cause and all generally untreatable.

And then I was re-diagnosed with Lyme, after 18 years, as well as bartonella and babesia. After about six months of combined, pulsed antibiotic therapy, I was 70-90 percent better on any given day.

I’ll make a follow up one day, but for anyone who wants to know the longer version of the story, here is a video I made shortly after my Lyme diagnosis, just as my life was beginning to change for the better.

I did this as a video because it is long–very long, at about an hour and a half. If I had written it, it would have been a book.

If you have Lyme, chances are none of this will be new to you.

Note: I uploaded an update in December of 2016, below:

Here’s the original “mystery diagnosis” account:

And from a couple years prior, when doctors were suggesting I might have MS, and then said I don’t.

Someone asked me yesterday if I think ignorance really is bliss.

In the case of your health, no. Despite the physical traumas of having a life-limiting illness and all the pain and confusion that comes with it, one of the absolute worst parts is the psychological trauma of not knowing what is wrong with you and being told, as many of us are by doctors, that the illness is either imagined or pretended.

This has to stop. Lyme disease is real, it’s prevalent, and no longer a mystery diagnosis. Doctors have no excuse to do this to patients anymore.

Updated 12/17/2016.

Leave a Reply