The Part of PANS/Encephalitis Recovery We Don’t Talk About

For the last eleven years of being sick, time has been my enemy. 

The first sign I was ill was that I started moving in slow-motion—I lost awareness of time passing.  Doctors thought it was late-onset Attention-Deficit Disorder. Instead, as I’d find out eight years later, my immune system was attacking my brain.

All of a sudden, I took hours to get ready in the morning and to go to bed because I couldn’t stay on task.  I had no energy, and the idea of merely brushing my teeth would sometimes bring me to tears.  I lived in my own world, where time was nothing more than a measure of my dysfunction.

I was a captive in that place for eight years, and even now, I’ll get a forced visit on a bad day.  Yet time remains my enemy because I’m getting older and still fighting my chronic illnesses—life is moving forward without me as I sit at home jobless, taking a break from my dreams…

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But this week, I found a positive side to time…

I went back to my neurologist, and to be honest, I didn’t think much would come from the visit.  Lately, I’ve felt like I’m not “sick enough” to have doctors take my concerns seriously, yet not well enough to live my life. 

So I voiced my intense frustration and asked why I’ve had such a hard time with concentration and other cognitive functions despite feeling better in other ways. 

“It just takes time,” my doctor said with a gentle smile.  “You don’t get hit in the head and then be fine tomorrow.”

All together at once, relief and anger washed over me.

Indeed, my immune system hit my brain very hard last fall with autoimmune encephalitis/PANS—arguably, harder than any previous attack.  I remember the entire relapse, but it’s like two months of my life are missing because they were in a garbled twilight zone of dissociation, confusion, and despair from the inflammation it caused in my brain.

Shame

The episode burned away who I was as a person, leaving me to rebuild myself from the ground up—which can’t be done overnight.

To put it more objectively, in past flare-ups, I could take five days of 50 mg of Prednisone, and life would go back to how it was before.  In the fall, it took nine weeks of IV steroids to stabilize—equivalent to ~1200 mg of Prednisone each time!

That’s a horrifying amount of brain inflammation, if you ask me.  Why am I surprised that I’m not yet 100%?  Perhaps I should simply be patting myself on the back for surviving and forging ahead as best I can.

Nevertheless, I couldn’t shake the disappointment of learning that ultimately…

I must trust my worst enemy to heal me… Time.

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My doctor told me the same thing in 2015 after I had my Serratia-infected tonsils out and was 90% better from PANS/AE.  I had some tics and ADHD still, but she’d assured me it was all on its way out.  Sure enough, I fully recovered after a few more months.  (Had I not later caught Lyme disease, I believe I would’ve remained well.)

However, this time around is a little different because, given the two bad flares I’ve had in the last two months, I’m on the verge of relapse.  So as of today, I’m starting another treatment plan, which—you guessed it—takes time to work:

The “Duke Protocol” for autoimmune encephalitis.

For the next six months, I’ll receive monthly IVIG infusions at 1 g/kg—an infusion of healthy people’s antibodies to prevent my own antibodies from attacking my brain again.  It should also boost my immune system so it can more easily fight off my Lyme/Bartonella infections.  There’s a good chance my physical fatigue is from the infections, so we hope that will improve with IVIG, too!

I’ll also get 1 g of Solumedrol steroids at the same time to suppress any flare-ups IVIG might otherwise trigger and to knock down brain inflammation. I’ll keep taking Plaquenil every day to help the steroid’s anti-inflammatory effects last longer.

And of course, I’ll continue the Lyme antibiotics protocols I’ve been doing for the last year and-a-half.  I’m also heading to a new integrative Lyme doctor soon to see if there are any final pieces missing in this puzzle.

I have great hope that this treatment strategy will help, but I’m wrestling to accept that there are no shortcuts to healing a brain and a broken immune system.

Time and patience—not just protocols—are a critical, irreplaceable part in recovery. 

I didn’t think I’d leave that appointment with my neurologist preparing for six months of heavy treatment, but part of me is almost daring to hope this will be the final nail in the coffin of PANS and Lyme.

And who knows?  Maybe along this new chapter of my journey, I can reconcile with time and realize it was on my side all along—pushing me towards my diagnosis in 2014, and helping me along towards my final recovery here and now.

 


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12 thoughts on “The Part of PANS/Encephalitis Recovery We Don’t Talk About

  1. 19 years I battled lyme…. 19 years of torture. Agonizing torture ✨🤙🏼❤️I started my IG and blog account a few years ago for my son when I was dying… I wanted to leave him with memories and wisdom… then an incredible miracle happened and I healed (I write about it at http://www.crazytrailblazers.com.. And we post live updates on Facebook at Crazy Trailblazers.) The account then became more for me to relearn life and start enjoying every moment ❤️

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  2. You are so brave, and strong, and you keep learning for your wellbeing, seeing light in all the tough complexity you deal with. Massive hugs, and constant positive thoughts sent your way. ❤ 🙂

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  3. Such an insightful perspective – it’s all how you look at it…….time as your enemy or as your friend? I will keep you in my thoughts and hope for a complete healing as you start this next chapter. Good luck!

    Liked by 1 person

    1. In PANS, it’s extremely rare to find anything on an MRI (except sometimes a hidden sinus infection). The inflammation is constrained to the Basal Ganglia, and apparently it’s harder to tell if that’s inflamed. According to a recent presentation by AE expert Dr. Najjar, even in other kinds of autoimmune encephalitis, the MRI is normal 80% of the time. PET scans might show something abnormal, but since they involve radiation, they’re not done routinely.

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