It’s 6:00 on a Friday night, I’m drenched in sweat, sitting on my bed with no pants on, and mumbling nonsense. Tears are running down my face for no clear reason, and I feel outside myself, detached from reality. As my mom peeks into my room to bring medicine, I whisper that everyone hates me, warning that the Universe is out to get me. I have no idea why I’m saying or doing any of this—words are coming from my mouth and I can’t stop them.
Once again, I’ve lost my mind.
A few weeks ago, as per a new Lyme Disease/Bartonella protocol, I took just six doses of Rifampin, and since then, I’ve been having episodes of slight insanity. Truth be told, I’d been going downhill for over a month, but the new antibiotic seems to have accelerated my decline. Even worse, over the last week, the episodes morphed from strange behaviors to outright torture. My doctors determined that, once more, my own immune system was attacking my brain; an autoimmune, PANS flare, triggered by Bartonella treatment, was wreaking havoc on my mind.
The agony of those dark psychiatric assaults cannot be adequately described in words, but it’s like the most bitter combination of despair, rage, and panic. I’m trapped inside a brain that terrifies me, and I scream and throw myself onto the floor as if that might break me out of my wild mind. The disease convinces me I’m going to die, and the pain is so intense that I’m at peace believing it’s true. In those hours, I don’t fear death—I fear continuing to live with the overpowering torment.
Although a few days of steroids and restarting my miracle drug, Azithromycin, has brought me back from the brink now, I feel despair, not because my brain continues to be inflamed, but because I’m crushed that my disease can still flare up this badly—that it was the start of a PANS relapse. I feel despair that I still have PANS and may be considering more IVIG.
Sometimes, I feel that the grief of repeatedly losing myself to my own immune system and rebuilding my life over and over and over again is almost as bad as the disease itself. It always seems that, just as I’ve let my guard down and started dreaming about a good future, PANS and Lyme come rushing back to steal me away. Sometimes, the despair I feel about living with an unpredictable illness like this and wondering if I’ll ever get permanently better overwhelms me to the point where I don’t know how I’ll go on. But I believe that the way I’ve survived this illness for the past eleven years is because I can somehow always find the tiniest thread of hope to hang on to.
Despite soul-crushing adversity, I’ve continued to live my life, between the flares, for over a decade. I feel hope because this syndrome has not completely ruined my life. Although PANS is the worst kind of pain and recovery is full of setbacks, I did beat it into remission for several months in 2015, so I feel hope that it is indeed possible to get better. I feel hope that my life won’t always be this way. If I can beat it once, I have hope that somehow, I can do it again.
I may have lost my mind last week, but I haven’t lost my hope.
18 thoughts on “I Lost My Mind… But Haven’t Lost Hope”
You’re symptoms sound very familiar. Aealliance.org
Thanks for the link! AE Alliance is a great resource.
From my personal experience with Lyme and Babesiosis (since 1991) steroids are to be avoided in almost all cases. Once, the only treatment available at the time for Lyme iritis was prednisone drops. It eliminated the iritis, but the vibration that had been only in the left eye, rapidly spread to the right eye and beyond. Perhaps the most frustrating part of living with a tick borne infection, is that there is no one definitive treatment, especially after years untreated due to lack of knowledge, and willingness to treat among primary care physicians. If you can find and afford an ILADS doctor, that is your best hope for recovery, or at least managing your illness well enough to regain some (if you’re very lucky, all) of your former life.
Good luck. Hold onto that sliver of hope. You can get better!
Hi Courtney, thanks for your insights. I absolutely agree that steroids are bad for Lyme 99% of the time. My ILADS provider only made an exception because of the extreme nature of my symptoms and the likelihood of autoimmunity (not just the infection) being at work. Thanks so much for your encouragements! I hope you are well, too.
PS.. I hope you havent been doing any vaccines.
I have had Lyme and coinfections for decades… Contracted but untreated when I was a teen. I’ve endured PANS, went insane despite Lyme treatment, fueled by side effects from psych meds. Eventually I managed to wean off the psych drugs which was so hard but I knew they were making me worse if anything. I’ve been off psych drugs and antibiotics for a few years now. How? Herbs (CBD hemp oil and biocidin kept me stable initially) and Homeopathy is curing me. You don’t have to stop meds to do it but it helps it work better (because you can clearly see symptoms in order to choose remedies etc.) My daughter was born with Lyme and coinfections. We tried antibiotics with her for a decade but it didn’t help. She had developed autism and then PANS and I thought I would go insane again myself just knowing firsthand what she was enduring. But I knew psych drugs weren’t the answer this time. She is now recovering with care from a homeopath who knows PANS. There IS hope. I am in my forties and drug free, free finally from mental illness. I still have chronic pain but that continues to improve with treatment from the homeopath too. Please consider this. I wasted so much of my life and my daughter’s life not knowing the power of homeopathy!
Hi Jen, thanks so much for sharing your story. I’m so glad you have found something that has helped you and your daughter so much. There’s a lot that modern Western medicine doesn’t know and cannot effectively cure–most chronic illnesses being on that list. I think everyone’s path to healing is unique, but I’m hoping I’ll be able to get off these psych meds eventually, too. Perhaps I will look into homeopathy more, as there’s a Lyme homeopath nearby. Thanks again, and I hope you stay well!
Hi Jen, thank you for sharing your story! Do you mind sharing the name of your homeopath? I am familiar with a few world known pandas/pans homeopaths, just wondering which one you see. Thank you again! Warmest regards.
I have always had a bad reaction to steroids! Not sure how it impacts Lyme disease, but it may be worth looking into. I hope you find something to hope in this week <3
Thanks so much!
So sorry you have to continue to deal with this. Having similar experience here as well. Its so awful, hard to put into words.
I have heard & read that steroids activate Lyme spirochetes so is contraindicated for Lyme.
Have you been tested for anti-NMDA receptor autoimmune encephalitis? There’s a blood test but may not be definitive. Some need spinal tap to diagnose.
Thanks, Melanie. Sorry that you’re having similar experiences. Yes, steroids are usually bad for Lyme disease, but my provider is making an exception given how extreme the PANS symptoms were. I did get the blood test for anti-NMDA in 2014, and it was negative, but if this sort of thing happens again, it might be worth investigating. Thanks for bringing this up!