I’ll never forget the day I first set foot in a Lyme clinic, as I watched other patients with pale, exhausted faces roll into the waiting room in wheelchairs. I’d just finished another semester of college and a ten-mile run that weekend. I remember thinking, I can’t possibly be sick enough to have Lyme Disease. What am I doing here?
Unlike many people with tick-borne diseases, back then in December 2016, I didn’t feel physically sick at all—I had only severe psychiatric symptoms. I’d attributed them to my other disease, PANS, which is an autoimmune condition that attacks the brain and manifests in that way.
But a few minutes later, my life was turned upside down when my Lyme expert informed me I definitely had Lyme, Babesiosis, and Tick-Borne Relapsing Fever—and probably Bartonella. As it turned out, it was these infections that had triggered my 2016 PANS relapse—those were that late-spring “flu” that seemed to change everything. She said I’d be in treatment for at least a year and-a-half.
There was a silence in the exam room after my diagnosis. My parents and I didn’t know what to say because we were so devastated and shocked. Had we made a huge mistake by only treating PANS for the last two years? What would happen to me now? What would Lyme treatment be like?
With 2017 coming to a close, I’ve found myself looking back at this last year since my Lyme diagnosis. I’m not only amazed at how much I’ve been through—far more than I ever imagined—but also at how far I’ve come.
A lot of you have been asking about my Lyme journey lately, and although everyone’s story is different, I thought I’d let you all have an honest glimpse of my first year of Lyme treatment…
Beginning The Long Road to Recovery
When I started treating Lyme and its co-infections at the beginning of 2017, the antibiotics caused Herxheimer reactions every two weeks (an inflammatory response to toxins released by dying bacteria). This meant several days in bed feeling awful each time. As an avid runner, it was a huge adjustment coming to terms with being so physically ill this often. And I hated how frequently I had to miss class.
(Before Lyme, no matter how bad my PANS symptoms were, I’d almost always been able to go to class—even when I was too ill to comprehend any of the lectures.)
Was I really “not sick enough” to have Lyme after all?
Though I may have had things easier than many who have Lyme, on those days during treatment when I was sitting on the floor of the bathroom, sweating and heart pounding as I stared into the toilet bowl and waited for the inevitable, these Herxheimer reactions made it impossible to deny that, yes, I was indeed sicker than I’d thought.
Was I Really Getting Better, or Just Getting Worse?
Some of my Herxes were horrendous. On a couple of occasions, I had 103º fevers, constant chills, nausea, and needed help getting out of bed—on top of the worst depression and anxiety imaginable. Honestly, the Herxes were far worse than the initial sickness right after I caught Lyme Disease in the first place in early 2016.
Lyme Disease had also made me immune deficient, so until May this year, I had to get monthly low-dose IVIG infusions of healthy people’s antibodies, just so I could have anything remotely resembling an adequate immune system.
Yet as bad as Herxing and IV infusions may sound, they’re nothing compared to the psychiatric and cognitive effects of PANS and Lyme that I’ve also fought this year: the random panic attacks with no apparent cause; the depression that meant lying on the floor for hours, in a pile of used tissues; the loss of reasoning skills that almost made me drop out of college; the general sense of despair and torment that cannot be adequately described in words.
While going through the various protocols of antibiotics, herbs, and supplements in my treatment, there have been so many setbacks that I often felt like I was only getting worse.
For example, I didn’t have joint pain before I was diagnosed, but a few months in, it showed up in my hips, hands, and wrists. It was sometimes so bad that I wore braces and couldn’t type or write. And then I suddenly developed multiple painful ganglion cysts near these joints.
What is this Lyme doctor doing to me? I thought. Treatment isn’t working!
Hope and… Despair!
Nevertheless, by June, I got 95% better. My specialist said that after the next few months on a Bartonella protocol, I might be switched to a maintenance regimen.
But if I’ve learned anything over the last three years of PANS and Lyme, I’ve learned that recovery is a messier and longer process than you’d ever imagine…
Sure enough, a few weeks later, psychiatric symptoms began to creep back in.
It’s a Bartonella Herx, I told myself. It will stop in a few days, I said.
But then I started getting bipolar-like mania and mood swings. I sometimes hallucinated. On a couple of occasions, I had a delusion that I was about to die—and was so miserable that I found this comforting.
And then my OCD and tics and panic attacks came back, and my doctors all agreed it wasn’t only Lyme and co-infections anymore—it was a PANS relapse.
When changing antibiotics, trying to do more detoxing, and later stopping antibiotics didn’t help, we were left with no choice but to treat my symptoms as autoimmune. Bartonella treatment had caused so much inflammation in my body that my immune system was re-triggered into attacking my brain.
Yes, I still needed to treat the infections, but my body wouldn’t handle it without addressing the autoimmune PANS symptoms at the same time.
Steroids are almost always a bad thing for someone with Lyme since they can allow the infection to get worse, but my case was an exception, severe, and so obviously autoimmune that everyone agreed it had to be done.
Where I Am Now
After nine weeks of once-a-week IV steroids, and several additional rounds of antibiotics, I’m so much better. Just over a week ago, I graduated college. I’m no longer depressed. I have 95% of my cognitive abilities back. I haven’t had a panic attack in several months. The joint pain rarely comes. I no longer need monthly IVIG.
However, I’m still not done treating Lyme disease and its co-infections, because I still have flare-ups of both PANS and Lyme. I still have tics and chorea on some days. I still need several psychotropic medications to function. I still have an eating disorder. Nevertheless, I feel like myself again, and the Herxes are fewer and less severe.
Despite the many setbacks, I’ve made unbelievable progress over the last year.
the Truth Is I WAS “Sick Enough.” Now, I’m Getting Better.
Looking back at where I started 2017 and seeing how far I’ve come gives me hope and some assurance that I can continue getting better. In fact, I think looking back at my progress helps me look forward to more healing in 2018.
So, readers… How about you? How was 2017 in your journey? Leave me a comment below, and feel free to get in touch if you want to know any more.
Here’s to continued healing and forward progress for all of you and for me in 2018! Happy, healthy New Year, everyone!
For more about my journey through Lyme Disease, check out these posts: