Is There Hope in the Unknown of Chronic Illness?

Three months ago, as I drove away victoriously from the IV infusion center for the ninth, and final, time that semester, I almost dared hope I’d left behind the last three years of treatments and relapses… Almost.

It was the end of my college career, and I’d just spent its entirety fighting Lyme disease and an autoimmune condition that doctors still aren’t sure how to treat—or what the long-term prognosis is. I’d not only juggled exams and papers and weird living arrangements for four and-a-half years, but I’d been battling through countless procedures and medications and appointments—always in the naive hope that my illness would soon be over.

Yet my disease always returns when least expected.

Last August, I’d been enjoying a steady time of health, having completed a summer internship and preparing to coast my way through graduation. But then, out of nowhere, my immune system attacked my brain once again, and before I knew it, PANS had kidnapped me from my own body. All of a sudden, my illness held my personality and my intellectual capability as hostages, demanding a new and stronger treatment as a ransom.

And so, my neurologist put me on IV steroids for the rest of the semester, and off I went to the infusion center each week.  Slowly, my cognitive abilities returned, and against all odds, I graduated in December.

But then I was even more amazed when I began getting back parts of me that I had no idea I’d lost to my disease—my sense of humor, my hobbies, my curiosity, and my love for living.

In fact, after the steroids, I was doing so well that, for the first time in nearly two years, I started to let myself dream about my future, because it finally seemed like PANS was in my past once and for all.

But then came last Monday…

Out of nowhere that afternoon, my thoughts began to spin. The tell-tale despair-rage-panic feeling that only PANS can bring pierced through my brain like a dagger, permanently marring that day into a nightmare.

I knew I was having a panic attack—a classic PANS symptom—but I figured if I took some Ativan and Advil, I could keep the worst of my disease at bay. Maybe it was just a fluke. Maybe I’d wake up tomorrow as if nothing had happened.

Yet with each day that went by last week, I fell farther and farther and farther into the nightmare. By Thursday, I was curled up in a fetal position all day, in complete and utter psychiatric torment created by the uncontrolled inflammation in my brain. I existed in a nothingness, in which doing anything at all was exhausting and torturous. The sofa moved as the walls danced side to side, and the pillows dragged themselves across the floor—hallucinations that proved my immune system had set an inferno to my neurons.

And then the doorbell rang…

Just as I was sure I couldn’t take the autoimmune agony anymore, on Friday morning, a nurse showed up at my doorstep, hooked me up to an IV, and dripped another 1000 mg of Solumedrol through my veins—just like at the infusion center last fall.  (That it only took three days of pleading with insurance and arguing with the pharmacy was quite a miracle.)

Less than an hour after the treatment, a dark cloud lifted off my psyche; the bone-crushing obsessions and irrational terror ended.  It was as if the whole episode never happened.  My symptoms completely abated.

Sometimes, when I get better from a flare-up, I’m so relieved that I feel nothing but gratitude. Other times, like this one, I’m overcome with anger.

For unknown reasons, although PANS seemed to be in my past until this week, I’ve been getting physically sicker and sicker in other ways ever since I graduated in December.

These days, if I go out for errands or to meet up with my friends for too many hours at once, I end up in bed for days afterward.  My hands are constantly swollen.  I ran half-marathons last fall but now can barely run at all.  I’ve seen my doctors and spoken with my therapists, and no one knows what’s wrong with me.

I’m so angry that despite doing everything I can to be healthy, I continue to get sicker—and had yet another PANS flare this week.

On the surface, you’d think I’d be the healthiest person alive…  I sleep nine hours each night. I take a walk every day. I eat a whole-foods, paleo diet. I go to therapy. I avoid stress as much as possible. I live in a new-ish house, free from toxic mold and pests. I’ve been treating my Lyme disease under the guidance of another expert for over a year.

So What the @#$% am I doing wrong?

Lately, I’ve lain awake in bed, feeling my heart thump through my chest… “Why?” the word falls from my lips, like a curse under my breath.

Yet despite my illness and my worst intentions, the life force continues to flow through me with every heartbeat and every respiration. On those nights, a lonely tear streams down my face, because I realize that my body isn’t ready to give up yet—and neither can I.

The truth is that there are far more questions than answers in our existence. There are many more mysteries than certainties—both in relationship to our health and in our relationship to the universe. There’s no simple solution to anything, and especially not to healing the two all-consuming diseases that I have.

As I feel my pulse right now, I’m taking a breath, because I know my body is saying I still have a life to live—even if my illness makes it nothing like the one I want right now. Flare-ups like this week’s may remind me of the fragility of my own body, but they’re also a testament to the strength possessed deep within.

I will never find all the answers, and I fear every day that I’ll never be cured. Even so, as long as I have a heartbeat, I will keep searching, and I will keep fighting. Now is not the time to give up—it’s the time to keep living and trying, one tremulous breath at a time.

24 thoughts on “Is There Hope in the Unknown of Chronic Illness?

  1. Have you looked into Chronic Inflammatory Response Syndrome (CIRS)? Most people with Lyme and more have a mold illness. Please look into Dr. Shoemaker at survivingmold.com. I learned 25% of people can’t detox mold properly, it’s genetics. Most people who continue to treat and not get better are exposed to mold and/or have CIRS. It’s worth looking into. The site has certified specialists too. Sadly, like most chronic illnesses regular doctors are clueless and will say mold can’t make you sick. Unfortunately, mold can kill you. 😢 I wish you the best! Other thing to check out is DNRS by Annie Hopper. It’s amazing!!

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    1. Hi Kim, thanks so much for the information! I did briefly look into CIRS, and I was negative on one of the main screening tests. I’m going to a Lyme-literate integrative doctor soon who knows more about this, though, so we’ll see what he has to say! 🙂

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      1. There isn’t one main screening test so unless you do all the shoemaker labs you don’t really know whether you have it or not. I’m curious what test you have been told is a “main screening” test for mold?

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        1. I did the VCS test, and my results were well above average. Although this alone certainly can’t rule out mold illness completely, from what I’ve read in my own research, people with mold illness fail it 92% of the time. I also live in a new and quite dry house now. I know there are blood/genetic tests I need to pursue, too, though, so I’ll talk to my integrative doctor about it. Mold and CIRS can definitely have serious consequences, and more people should know about it!

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  2. Carissima,
    Even though I did not contact you for awhile, I read all your posts with awe and admiration for your strength, determination and achievements. You are in my thoughts and you are an inspiration to our PANS afflicted family!!

    I am with you when I ask myself “So what we are doing wrong?”… we are all suffering for these unexpected and crippling PANS’ relapses. Leonardo has ups and downs constantly: he had two terrific months last spring in Lampedusa, Italy and then a relapse early in the summer; he felt better in August-September and decided to move out then he had a relapse at the end of October and moved back with us. Waiting for a new IVig now… It’s, as you say an exhausting roller coster.

    My dear, continue to hope because you deserve to live fully your passions. And congratulation for your internship and your graduation!! COMPLIMENTI! You are such a role model for all of the young adult with PANS!

    I am looking forward to your next entry as usual, praying that is going to be about recovery and healthiness.

    Una abbraccio
    Claudia

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    1. Thank you so much for such a kind and lovely note. It’s great to hear from you! And it helps knowing I’m not the only one having these thoughts and fighting this battle. I’m so sorry to hear that Leo relapsed, but I hope the next IVIG gives him relief soon. You all will be in my thoughts as you ride this same PANS roller coaster. Thanks again!

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    1. No, I don’t think so. I did a bunch of blood tests (including NMDA and VGKC) a few years ago, and all that showed up was a low level of antibody seen in Myasthenia Gravis–which they said was a false positive. I did have Dopamine D1 and Anti-tubulin antibodies on the Cunningham panel. I probably should run some more tests now, though. Thanks!

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      1. My son did .1mg fludrocortisone for POTS, which he started 12/2015, and was on, had a few other situations, including a steroid taper pack for poison ivy, and remained on fludrocortisone until 6/2017. Then he crashed…relapsed with PANS (undx) and POTS/dysautonomia’s. After that steroid pack, he had a 180 degree turnaround in his life, for the better. It was amazing. I never put two and two together. I knew I didn’t want him to go off of fludrocortisone, which his cardiologist okayed, because he was doing so amazing. I thought to myself, its been only one great year, after 8 bad ones, off and on in severity, but he never had a year like it. Things started to go down hill, and unfortunately I also didn’t ever make any connection regarding vaccination, or dental work..to more things to trigger things full bloom by September, back to school, and sinus issues started, as well as viral…and it was PANS once again. It made me of course wonder, HOW did this happen? How did he have a great year, after 8, and now is suffering again. I keep very detailed records on him, calendar, and what he has done, what meds/supplements, injures, etc. Its been 10 years of that level of detail. So I was able to connect the dots, no doubt that steroids had an amazing impact for him. Imagine my happy surprise, when I read a newly published book called Shadow Syndromes, (1/2018), that said daily low dose steroids are showing promise in studies as maintenance. It is exactly what I suspected for my son. Low dose fludrocortisone was prescribed just so that the body holds on to a bit more fluids, not to hit the immune system like a pack does. I feel like it was an accidental perfect protocol for my son. I do not have a literate doctor on board, I did get him back on that low dose, before his POTS kicks all the way back in, and while I know that’s not enough to pull him out of his most recent (6 months now) flare, I am hoping that somehow I can get a doctor to help just try recreating what happened for him mid 2016. Sorry its long, but anything I learn or suspect I feel the need to share, because no one deserves to suffer. And this affects my now 17 1/2 yr old (who the protocol was about above) and my nearly 21 yr old, and even myself, all PANS at this point. I hope you feel better soon. ❤

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        1. Wow, thank you so much for sharing all of this! I’m so glad you connected the dots and figured out something that helps your son. I hope you can find a doctor who is on board with PANS so he can get out of this flare. There’s a list of PANS-friendly providers on pandasnetwork.org. I had a long period of wellness when I did the daily low-dose steroids, and I know they’re a big reason I was able to stay in school while fighting PANS–I would’ve been so much worse without them. They definitely can help a lot. The IV steroids, when given once a week or a couple of times a month, seem to have less side-effects for me, so that’s probably what I’ll be doing going forward. Have you ever tried IV steroids for getting out of a flare? I usually feel better within hours. Thanks so much, again, for your help and good wishes. I hope things get better for all of you soon, too!

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  3. I just thank you for continuing to share your journey in your truthful transparent way! As a grandparent of two PANDAS children, I appreciate the insight you give me into what my grandchildren may be feeling when they are flaring. Though they are only 4 and 8, your hope and tenacity is so encouraging! My four year old already gets it and says that she tells her PANDAS to go away and stop telling her she can’t do things she knows she can do. She tells her PANDAS that she is the boss of her brain! As long as you have breath please continue to fight this for yourself and for all the children behind you! Thank you, Melissa❤️

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    1. Thank you so much for the kind comment, Melissa. I’m sorry your grandchildren are dealing with PANS, but I’m happy to know you’ve found my writing helpful. I hope they keep fighting back, too. Thanks again for the encouragement!

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  4. You have many gifts, and one of them is your incredible ability to convey what you are feeling with passion and truth. You are wise beyond your years and such an inspiration to so many people. Keeping you in my thoughts.

    Liked by 1 person

  5. How heart wrenching! You continue to find and look for hope in a world of unknown experiences. You have an inner strength that shines through all your tears and pain. Thank you for sharing your inner thoughts. You are making a difference.

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  6. Dear Victorious Dreaming Panda–
    You are ever an inspiration, a frontier-conqueror! I am rooting for you, praying for you, and thanking God for you and your gifted, giving words. I thank you from every dimension of my heart. Onward!

    Liked by 1 person

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