How I Finally Made Peace with My Lyme Diagnosis

“Close your eyes,” the Lyme specialist said. “And hold your arms out straight.”

My body began to jerk while I stood in front of the exam table with my arms extended. As I strained to stop the involuntary movements, I could sense my parents’ dismay even through my eyelids.

I’d come to that consultation in 2016 expecting to be told I couldn’t have Lyme disease because I didn’t have symptoms. But in that moment, I realized I couldn’t hide from the truth any more.

“Okay. That’s enough.” My specialist paused and glanced at the copious notes she’d taken on my history and all the other abnormal parts of the exam. I felt a pit in my stomach as she flipped through my blood tests one more time, because I knew she was about to shatter my world with her next words:

“It’s Lyme disease.”

When I’d been diagnosed with PANS in 2014, I’d immediately felt a tremendous sense of relief and gratitude that, after eight years of misdiagnosis, I’d finally learned what was wrong with me. But when I was diagnosed with Lyme disease on that fateful afternoon two years later, I wanted to run right out the door of the exam room, get back on a plane, and pretend the whole day had never happened.

How could I accept yet another life-altering diagnosis?

A long time ago, I’d made peace that life was unfair, so it wasn’t that I was angry at God or the universe or even the tick that bit me. No, I was angry that it took ten years from the time I first noticed Lyme-like symptoms to me getting a diagnosis. Some Lyme and PANS symptoms are identical, so what if I’d never had PANS at all, and it turned out I was misdiagnosed for an entire decade?  Or, because PANS is triggered by infections, what if I could’ve recovered without the many PANS-specific treatments that hadn’t been enough?

I was angry that my no doctor had suggested I do the more accurate Lyme test by Igenex labs sooner—just the wildly unreliable CDC tests. I was angry that someone forgot to send the page of the results that showed I unequivocally had Lyme disease—which delayed my decision to schedule the Lyme consultation by four months. I was angry that I had undergone tonsillectomy surgery and incurred severe bone loss from a year of steroids, and that my parents had spent so much money on IVIG, perhaps for nothing but a misdiagnosis of PANS.

And so, although I begrudgingly complied with my new Lyme treatment plan from that day forward, I still wasn’t willing to fully accept the diagnosis. I paid lip-service by announcing it on my blog and even becoming passionate about awareness. Yet all the while, I was so angry that I remained in denial that I truly had Lyme myself.

Who wouldn’t be upset about needing thirty pills per day?

What if “Chronic Lyme” was the real misdiagnosis?

In between follow-up visits to the Lyme clinic, I looked for any piece of evidence I could gather pointing to persistent Lyme being a hoax—yet when I looked at the facts, there was no definitive refutal of its existence or of the efficacy of the methods my specialist was using. So I faithfully continued the treatments because the data suggested it was my best way forward—though my emotions insinuated I couldn’t possibly have this terrible and tragically misunderstood disease.

As time went on, it became clear that the antibiotics were helping, so I slowly learned to tolerate the diagnosis. In fact, when I was away from home working last summer, it felt freeing to come out to my colleagues about Lyme after it made me miss some days.  True, none of them realized the full extent of all that having Lyme entails, but amazingly, I was met with nothing but support and compassion.  Several people shared stories about their friends who’d recovered and asked if I needed anything.

Contrarily, on the rare occasions when I’d told people about my PANS in the past, they’d never heard of it and understood even less and usually just said something about how I needed to get out more or try yoga—or my personal favorite: that I should take up dance lessons to stop my involuntary movements.

I had to admit that, if my symptoms must now be labeled “Lyme disease,” I didn’t mind that a few people actually recognized it was a serious illness that took more than positivity to overcome.

But the anger and confusion resurfaced last fall…

After switching to antibiotics targeted at the Lyme co-infection Bartonella, I literally lost my mind and almost flunked out of my final semester of college.  In an unprecedented decision, my Lyme specialist agreed with my PANS doctor that I needed weekly IV steroids, because the brain inflammation was definitely from my own body attacking—not from the infection itself.

And then I felt vindicated, in a twisted way, because I could at least take comfort knowing PANS wasn’t a total misdiagnosis after all—and that past treatments before my Lyme diagnosis were certainly beneficial.

Yet when IV steroids had the swift and dramatic effect of bringing me back from the brink of insanity, I forgot that the slower-acting Lyme treatments had ever helped me at all.  And I questioned how suppressing my immune system with steroids could’ve made me better if I had any infections. And if I didn’t have an infection, I was furious that the “unnecessary” antibiotics had caused the PANS relapse. (Meanwhile, I ignored how my Lyme nurse said the Rifampin antibiotic triggered my immune system precisely because I had such a huge Bartonella problem.)

Despite my silent skepticism and anger about my Lyme diagnosis, I continued the protocols, and I returned for another follow-up this week. The upshot was that I’d made a lot of progress over the last year and-a-half, but I still had a long way to go in my physical recovery.  Even so, thanks to the encouragement and reassurance from my specialist and what happened next, I went home just a little more whole…

something strange took place in the waiting room.

It was an unusually busy afternoon, so the office was packed.  I sat in the lobby for forty-five minutes after my appointment, while my mom, who was diagnosed last fall, had hers. All of us patients began to chat with each other, and before I knew it, I’d been sucked into an impromptu support group. We told our stories. We discussed our treatments. We ranted about clueless doctors. We shared phone numbers and blog links and hugs.

Even though I’ve been an active member of the online Lyme community ever since I was diagnosed, it was powerful to speak in person with others who had the same challenges and feelings about their illness.

Somehow, realizing that my diagnosis made me a part of this community of strong people with similar stories made me finally accept that I, too, am fighting Lyme disease.

There’s no way to prove or disprove that I continuously had Lyme disease from the time I got sick eleven years ago. There’s no way to go back in time and send me to the Lyme specialist a decade sooner. There’s no way to know what my life would or wouldn’t have been if I’d been treated as soon as I was infected.

Indeed, I can’t change the past, and I can’t get the infection out of my body any faster right now. But I can make the best of this moment and this present day.

Yes, I’m still angry that I have Lyme disease,

But no, I’m not in denial any longer.

Knowing I have Lyme means I’m part of a huge community of angry Lyme warriors fighting the good fight, pushing back against ignorant doctors, and reclaiming our lives one day and one remedy at a time—and you can be sure that together, we’re going to win someday.

7 thoughts on “How I Finally Made Peace with My Lyme Diagnosis

  1. Aw I get that the diagnosis is so hard. 😦 25 years later, and even when it was suspected 13 years ago (and did an expensive test then that came back “inconclusive”) -I JUST got diagnosed. I’ve been trying to understand how to deal with it….but I totally get your frustration, 100%. If you don’t mind me asking, what are you doing for lymes disease now? Still antibiotics? Or something else? Antibiotics that I took…for other things, is where my problems started…and damaged my stomach years ago. So I won’t be taking those…but…. Recently I started EPD immunotherapy and had some good results using oregano oil and a variety of rotating herbals. Some of my energy is coming back and sleep is easier-its the little things I notice that I’m thankful for. Apparently too-there is a like…a proper order for things if you have lymes? I’m not sure but my Mom has been researching with me and it seems getting rid of co infections – parasites, and toxic metals are the first thing to do for lymes? Anyway, I’m thinking out loud, but I hope you figure everything out and feel better soon. I have to hope that so many doctors and people are coming at this from so many different directions-someday soon we will come up with a streamlined conclusive answer!! 😀

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    1. Hi Krysta! Wow, 25 years is a long time to suffer. I’m glad you have an answer now… I do quite a few things for Lyme treatment, but it’s mainly antibiotics and supplements. I also follow a paleo-ish diet, try to eliminate allergens (mostly dust mites for me), and work on sleep and movement as I’m able. I just started monthly IVIG to boost my immune system and help me fight off the infections more easily. I’ve done accupuncture and some Reiki, too. Antibiotics can definitely mess up the gut and do more harm than good for some people. For me, since I have PANS, I can tolerate ridiculous doses of antibiotics for long periods of time with no (apparent) ill effects–no one understands why this happens with my condition, but in a way it’s a “perk” when trying to treat Lyme disease. My LLMD pulses the antibiotics (Monday, Wednesday, and Friday only) and includes a couple of weeks off them entirely, so that makes antibiotics more tolerable. I started out with a protocol targeting the Lyme, then a protocol for Babesia, and now I’m doing Bartonella. I’m not sure why it’s in this order, but my specialist does it this way for everyone I’ve talked to. Apparently the antibiotics included with the Babesia and Bartonella protocols work for Lyme, too. Detox is also important… What’s EPD immunotherapy? I’ve never heard of that. And I think you’re right about someone finding a conclusive answer soon. Science is progressing, and more and more doctors are working on finding better treatments.

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  2. Great post! I can identify with the frustration of feeling misdirected at the hands of healthcare professionals and then not knowing what diagnosis to accept. It grounds me though to realize that at the end of the day, they’re just people too like you and I, susceptible to making errors but (hopefully) doing their best. In my case I seem to have some sort of tickborne illness, but also a PANS-like illness as I had an extremely abnormal Moleculera/Cunningham Panel test. We think it’s possible that the tickborne illness may have set off a cascade of autoimmune reactions in me, so I’ve made peace with not having a tidy label to encompass everything I’m dealing with (though that certainly makes treatment more complicated). Anyway, just wanted to share that you’re not alone!

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    1. Thank you for the encouraging comment! And you’re right–most doctors really are doing their best, but they’re only human like the rest of us. All of the doctors I’ve worked with ever since my PANS diagnosis have been amazing on the whole… I agree that it’s good to not get too wrapped up in having or not having a particular label for everything. PANS/PANS-like conditions are usually triggered by infection, so hopefully it’ll get better when you get the tickborne illnesses under control! Thanks again.

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