PANS + Lyme: Recovery and 8 Years of Misdiagnoses

2 antibiotics, 3 medications, and 6 supplements: my weapons of choice against Lyme disease

2 antibiotics, 3 other meds, and 8 supplements: my weapons of choice against Lyme

“It’s Lyme disease.”

They were three words that shattered all of my expectations for recovery from PANS… Three words that I still struggle to accept… Three words that are going to change my life…

The other week, I was officially diagnosed with Lyme and some co-infections (Babesia and Relapsing Fever, in my case) at a Lyme treatment center. Apparently, it’s Lyme and the co-infections that are continuing to provoke my immune system and cause me to flare and not quite get all the way better.

While it’s great to have more answers, I found out other things I didn’t want to know…

In addition to my usual brain inflammation, the Lyme doctor discovered that my nerves are inflamed, and my spleen is enlarged from working so hard to fight off the infections. Also, I’ve almost completely lost my patellar reflex—when they took the rubber hammer to my knees, nothing moved—potentially a sign of a serious problem.  The “shin splints” that I can’t seem to heal may be bone pain from the infections.  Most frightening of all, my knee-buckling attacks (which I’ve had for two years) may be atonic seizures.

After the trip to the Lyme specialist, I was reeling for days, which is why I haven’t been able to post until now. Physically, I haven’t felt like a sick person at all—I have none of the aches and pains that so many people with Lyme experience, so realizing I was indeed quite physically ill came as a shock to me.

Moreover, I’d been hoping to be done with PANS soon, but I’m now told I’ll most likely need Lyme treatment for at least another year. And if it really takes that long to clear the infections, I don’t think I can expect to be free from PANS until they’re gone, either, can I?

So what can I do? I’m beyond tired of fighting for my life, because I’ve had PANS for ten years (untreated for eight of them), and I’ve especially been fighting hard over the last few months because of this Lyme-triggered relapse. Plus, trying to conquer an eating disorder brought on by all of this has taken its toll on me. But now, they’ve told me that I must also fight against Lyme somehow? How many battles can one person fight at once?

But one evening this week, when I was feeling particularly depressed about my situation, I came across a Bible verse that really spoke to my battle fatigue:

“The Lord will fight for you; you need only to be still” (Exodus 14:14).

In reality, for now, “Fighting Lyme,” is nothing more than adding another antibiotic and a few more supplements and continuing to do my best to live a healthy life. To fight Lyme, I only have to be still and wait for these treatments to work. Fighting Lyme changes absolutely nothing about my day-to-day life—except that eventually, it will get better and easier when I beat it into submission.

Although it may seem like Lyme is a whole other terrifying monster to try to subdue, when I was done with my shock and denial, I realized that fighting Lyme isn’t actually much different from fighting PANS. “Being still” and waiting for treatments to work is exactly what I’ve been doing for PANS for the last two years, but now, I’ll be eliminating the infection that triggered this whole relapse in the first place. So really, the diagnosis is a good thing, because I have a more concrete plan for how to recover from both PANS and Lyme.

And so, readers, it looks like you’re going to get at least another year of posts out of me, thanks to this long Lyme treatment process. Two weeks in, I’ve already made leaps and bounds—I’m concentrating better and no longer have suicidal thoughts—so with any luck, 2017 will be the year that you and I all beat PANS and Lyme once and for all.

Thanks for all of your support, particularly through my 2016 relapse. Here’s to a better 2017!

Comments on: "Lyme Disease: A Still, Silent Battle" (24)

  1. […] thought my Lyme diagnosis and the treatment that ensued would be the nail in the coffin of my eleven years of chronic […]

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  2. […] was left of my OCD, and I beat this disease into remission at the end of 2015. Unfortunately, I caught Lyme Disease a few months later, and I’ve not been able to come back from […]

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  3. Charlotte said:

    I know this was posted a while ago, but I’m sorry for your Lyme. I was diagnosed with Lyme in September 2016 and PANS in December 2016. All I can say is, oh joy, the many, many meds.

    Like

    • Thanks, Charlotte. I think I take about 30 pills each day, so I feel your pain. You’re not alone! I’m sorry you have to deal with all of this, too, but I hope that having the diagnoses will lead to a good way forward.

      Like

  4. […] after my narcolepsy diagnosis, though I’m still fighting PANS to a far milder extent (and now Lyme), I live a fulfilling life.  So I can’t help but think, what if I’d never found out I had […]

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  5. […] now, it’s been over a year since I caught Lyme disease and suffered my third major PANS episode, ten months since the high-dose IVIG that was meant to […]

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  6. […] The last two weeks of symptoms flashed in my mind… The severe anxiety that gave me a panic attack over leaving the house. The lack of concentration and mental energy that meant falling behind in school. The incessant partial seizures that made me nervous every time I stood up to walk. I hadn’t even been in such bad shape when I started being treated for Lyme in December. […]

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  7. […] now been about two months since I began Lyme treatment, and I’ve been herxing every two weeks; just as I recover from one reaction, I start having […]

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  8. […] since I announced my Lyme diagnosis, I’ve been inundated with questions from readers. While I’m not qualified to give anyone […]

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  9. I’m very sorry you have Lyme, but congratulations on getting diagnosed! I got my Lyme diagnosis back in a few years ago, and my PANS one more recently. I’m praying for you! Thank you very much for blogging so honestly about PANS!

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  10. […] week or two, and in between them, I was barely living. Junior year, I was almost okay… Until I got Lyme disease and anorexia in the […]

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  11. You are so amazing. I love how you write so clearly about the waiting for treatment to work! I feel ya on that front. My doctor doesn’t think I need to get tested for Lyme but I keep hearing more and more about it. Can you please let me know how you decided to get tested and where? Thanks!

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    • Thanks, Alyse!

      I got tested through a private lab called Igenex. I have a local PANS-friendly doctor, and I convinced her to order the tests. I did their complete neurological panel, I believe. I’d heard about the test from other readers over the years, and after my relapse this spring, I wanted to know what caused it. I had a flu-like illness in April, followed by heart issues and extreme fatigue, so that set off red flags for Lyme (despite no rash or obvious tick bites).

      If you’ve been trying to treat PANS for a while and are not making much progress, Lyme could be the culprit. Hopefully, you don’t have it, but if you do, you’d sure want to know. I don’t think it ever hurts to get more knowledge to either rule it in or out. Maybe you can get your doctor to reconsider. Good luck!

      Liked by 1 person

      • Alisa Van Dissen said:

        Re: A PANS-friendly doctor…is it necessary for a doctor to order the IGENIX test? My son is only treated by the PANS Clinic at stanfird. Perhaps his pediatrician would be willing to order the tests. What are all the co-infections, besides Lyme, were you tested for? Do you or any of your readers know of a good physician who treats Lyme in the Santa Cruz/ Monterey/ Bay Area? Stay positive and we will continue to keep you in our prayers!

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      • Hi there! So sorry I’m just seeing this! This is super helpful information, I really appreciate it. How are things going for you? Sending positive vibes your way 🙂 -Alyse

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        • No worries. Thanks for the positive vibes! On the whole, I’m pretty good. I’m not having many symptoms except some (relatively) minor movement issues and not sleeping much at the moment. I’m mostly just dealing with the fallout of four months of food restriction at this point (bulimic-like binging and compulsive exercising). How are you?

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  12. What Lyme treatment center did you go to?

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  13. When I first started reading your post, I thought, “Oh no!” but quickly came to the same conclusion you have. It’s actually good news – an answer to why you haven’t been able to beat PANS totally. So I know it’s easy for me to say, but hang in there! Wishing you a lot of patience and a full recovery.

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    • Thanks, Janet! It certainly took a week or so for me to come to this conclusion myself, but let’s all just hope that it really is the final piece in the puzzle. Thank you for the encouragement!

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  14. Wow! I often wonder if my child has something else going on, prolonging healing, & causing relapses. Tests for Lyme have been negative but I know the tests may bring false negative.
    It is a double-edged sword tof get this new diagnosis, but it may be the answer to true healing. Follow the treatment regimen & hang in there. What else can one do? Keep us posted, if you”received up to it.
    Continued prayers for your prompt & final recovery!

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    • Have you ever done the Igenex tests to look for Lyme and co-infections? The “standard” Lyme tests often give a false negative–they did for me. I’m hearing more and more that a lot of kids with PANS also have Lyme, unfortunately. I sure hope this isn’t the case for your kid, though. I’ll definitely keep everyone posted. Thanks again for the prayers!

      Like

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