This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:
And so, I present my own story as a living example of why you should never ever listen to this terrible advice—and certainly shouldn’t trust Wikipedia…
In 2012, I caught Obsessive-Compulsive Disorder.
One fateful Saturday afternoon in my senior year of high school, I became inexplicably convinced that I was a terrible person going to Hell. My mind was suddenly consumed by unwanted obscene intrusive thoughts: words and images of explicit and blasphemous material that went against everything I believed.
Overnight, I’d developed a severe case of a lesser know type of OCD which revolved around moral and religious obsessions and invisible mental compulsions. The extreme anxiety I felt from my OCD turned me into a caged tiger, and I would pace the house for hours and hours and constantly fidget during class.
It was as if an outside force had completely taken over my mind and body. I had no idea what was happening to me.
My parents took me to the doctor, and I was given medication and referred to a psychologist for therapy.
“What about PANS?” they asked my GP. My mom had read about the disease while researching OCD and immediately had a bad feeling that it explained my symptoms.
My doctor sighed:
“PANS is controversial. We don’t know much about it… But we do know that therapy helps the majority of people with OCD.”
And so, I began an eight-month course of intensive Exposure-Response Prevention therapy. I slowly got my life back and was freed from my severe OCD.
Because therapy seemed so effective, my family and I figured that even if PANS/PANDAS had caused my OCD, it didn’t matter anymore. We trusted the conventional treatment strategy for suspected PANDAS: that it should be treated no differently from “garden-variety” OCD.
But oh how wrong we all were…
There’s one big problem with the “mainstream” PANS treatment advice that, unfortunately, doctors don’t seem to grasp: PANS is an infection-triggered autoimmune disease that attacks the brain—not a mental illness. Although the syndrome manifests as severe, sudden-onset OCD, PANS can no more be cured by SSRI’s and therapy than can any other autoimmune disease such as Multiple Sclerosis or Lupus.
Telling someone with PANS that therapy and psychotropic medication is the solution is like giving a cane to someone with Rheumatoid Arthritis and calling that a “cure.” Yes, mobility aids may be necessary to cope with symptoms, but they don’t address the underlying disease.
Similarly, therapy can help cope with the PANS symptom of OCD, but it doesn’t address the brain inflammation that causes it. Just like other autoimmune conditions, forgoing proper treatment for PANS can allow the illness to progress…
Indeed, my fight had just begun.
A sore throat at the beginning of my first year at university brought PANS back in a new form: I fell into a dream-like state for the next nine months, where I couldn’t tell when I was awake or asleep; I slept at least ten hours at night and constantly fell asleep all day long, no matter how much caffeine I had. I was soon misdiagnosed with narcolepsy.
As the months went on, my anxiety reached new extremes, and I started waking up in the middle of the night in panic attacks. I developed a hand tremor, and I noticed random muscles twitching at times, too. I would get so nauseous that I would go multiple days barely able to eat anything. I saw half a dozen specialists over the school year, but nothing seemed to help.
Any doctor who thinks PANS should always be treated the same as any case of OCD clearly knows nothing about PANS. Unless someone has a mild case or is “lucky” to get diagnosed quickly, you’ll find that most people with PANS, like me, have tried multiple psychotropic medications, seen numerous therapists and doctors, and have probably accrued an impressive list of diagnoses in addition to OCD—and they continue to suffer intensely.
I did my very best to comply with the therapy and medications my doctors suggested in the hopes of getting better, but instead…
I got worse and worse and worse.
Finally, that summer after my freshman year, when I was sure I couldn’t get any sicker, I woke up one day with wild involuntary movements all over my body. I suddenly couldn’t walk. I had trouble speaking. I hallucinated. I wrote the letters all out of order when I attempted my homework. I became suicidal and had outbursts of rage.
I literally told my parents I had “died,” because I felt like my entire personality and my very self had been wiped away over the course of a few days. It was like someone had kidnapped me from my own body.
Only treating PANS like “garden-variety” OCD is a complete misunderstanding of the very nature of the disorder. PANS isn’t just sudden-onset OCD—it’s an autoimmune condition that attacks the brain. The attack not only creates OCD, but it results in all sorts of other symptoms, such as the ones I later experienced (and plenty of others that I didn’t have). You cannot possibly fix the aforementioned problems by only treating PANS like “any other case of OCD.”
So how did I get better?
In July of 2014, almost two years after my extreme OCD began, my family schlepped across the country to a neurologist who specializes in PANS, because no one nearby knew how to help me. Other doctors had warned about seeing specialists like her, saying the treatments were “dangerous” and “unproven.”
But when a person is threatening to kill herself, not eating, and not responding to drugs and therapy anymore… What’s the real danger in the situation?
And so, a few days after I was diagnosed with PANS, I received an aggressive autoimmune treatment called IVIG: an IV infusion of antibodies from thousands of healthy donors. The idea was that the IVIG would reset my immune system and stop the autoimmune attack. If it stopped my own antibodies from attacking my brain, it would therefore stop the PANS symptoms.
Indeed, after a second round of IVIG a few months later, a year of antibiotics and steroids, and a tonsillectomy to get rid of an infection that was aggravating PANS, I fully recovered. By early 2016, I was left with only mild symptoms that had no impact on my life.
did therapy have a role in my recovery?
Although I developed new PANS symptoms in that first year of university, which later responded to IVIG and other treatments, I do believe there’s a good reason my OCD never got as bad as it once was: I learned coping techniques from my eight months in therapy. To this day, if I have a PANS flare-up, I might get the same sorts of constant, painful intrusive thoughts that I did in high school. However, I now have tools to avoid carrying out compulsions, so my OCD symptoms have never taken over my life again.
I’m not anti-therapy, anti-medication, or anti-psychiatry—I’m simply against only using these methods to treat a physical, brain-attacking autoimmune disease.
PANS is not a mental illness, but many of its symptoms, such as OCD, can be alleviated through therapy. In fact, I think most people with PANS could benefit from it. And sometimes, the right psychotropic medications (often in small doses) have been useful, too. This disease is harder than you can imagine to live with every day, and if there’s anything safe that might help, why not do it?
Nevertheless, even though PANS treatments like IVIG, plasmapheresis, and long-term antibiotics have significant risks, in moderate or severe cases like mine, it’s downright dangerous to use nothing but conventional OCD treatments like therapy and medication.
Other than the rare instances of PANS where a kid outgrows it, at best, someone with severe PANS who forgoes immune-based treatment might “manage” their OCD with psychiatric care for the rest of their life. At worst, that person will be permanently disabled by intractable symptoms… Or perhaps something even worse if they become suicidal.
My experience of PANS is not an anomaly—the only thing unusual is that I found a doctor willing to treat me properly. I shudder to think of how many thousands go without adequate care due to medical ignorance.
Until the textbooks (and Wikipedia page!) are rewritten to portray PANS/PANDAS as the serious autoimmune disease that it is, I will not stop speaking against the recklessness and inadequacy of the so-called conventional treatment strategy.
For scientific research showing why PANS/PANDAS is NOT controversial or hypothetical anymore, and why the Wikipedia page is wildly inaccurate, please refer to these credible sources:
It’s very true, therapy is not enough. My intrusive thoughts feel like electrical shocks.. They come with a sort of brain pain. It’s hard to describe this. Therapy has not been successful in reducing them. IV Solu-Medrol helped me, but I don’t think it was enough. I am in Canada and my neurologist said I don’t qualify for IVIG, I might have to travel to US. Do you know any good doctors who provide this treatment?
Yes, IV steroids often aren’t enough, either. aealliance.org and pandasnetwork.org have some doctors that might prescribe IVIG. I’ll email you some doctor names…
Hey, hope you are doing well.
I invite you to read a post of mine where I am gathering links of warriors facing mental health challenges 1st hand to educate people, to raise awareness and acceptance.
I need help from you in breaking stigma.
Here is the link to post.. https://stoneronarollercoaster.wordpress.com/2018/04/27/mental-health-awareness/
Your participation can change life of someone.
Thank you 🙂
Hi, thanks so much for inviting me! I left a comment about it on your post. 🙂
Thank you so much for accepting my invitation. This means alot 🙂
I agree–but the problem I see is that there is no treatment that has a REAL sure success in treating PANS either. I’m glad that IVIG worked for you, but there are people who have tried that and it didn’t work. It’s possible that those people don’t have strep, but have something like Lyme instead. However, the treatment for Lyme (by LLMDs) involves courses of antibiotics that are so long, they do their own harm by their effects on the gut.
So the difficulty is, you either have to wade through the murky waters of PANS to find a treatment that works for you, or else you have to take treatments from doctors who don’t understand PANS, but who offer “crutches” to overcome certain of the symptoms, hoping that enough of those will take enough of a burden off your body that it can heal.
There are certain psychiatric medications I’m personally against “out of principle”, like most if not all antipsychotics. Granted, I don’t mean that people who genuinely feel better on such medications should stop taking them, what I mean is that the way they work strikes me as creating far more problems than they may solve, even if their effect makes certain people *seem* healthier or easier to deal with to others. I’m not against SSRIs out of principle, but for a long time I didn’t want to take them out of fear that they would provoke PANS symptoms.
When I finally tried one, the dramatic change showed me just how low my serotonin was, and taking 5-HTP to increase it has been very helpful, with most of the benefits and none of the side effects. That doesn’t mean it’s gotten rid of ALL my PANS symptoms, particularly my severe food sensitivities, but it’s non-toxic and available at my local health food store, as opposed to some elusive autoimmune cure that I very much want, but don’t know how to find, and better than a high dose, open-ended antibiotic regimen that a LLMD may prescribe despite no real progress made.
My point is, what we really need is research into how to cure people like us. I’m certainly not for heavy doses of medication that lead one to feel “drugged’ just to get by and “act normal”, but I’m also not for little-proven “miracle cures” that some supposed Lyme expert pushes. Neither ultimately result in healing.
And I certainly agree that we need more research! You’re right–there isn’t a single cure that ALWAYS works for everyone. I think research will start to show more and more that there are multiple causes and risk factors associated with developing PANS, so it makes perfect sense that there’s no one treatment that works for everyone. Honestly, IVIG has never had a long-term effect for me. I’ve had high-dose three times, and each one has only lasted for about a year. They definitely helped and may have saved me, but I wouldn’t call them my cure, either.
The waters of PANS are way too murky. I hate how too many of us have to go through the back doors of the medical system to doctors who are shunned by their colleagues for treating a “controversial” disease–doctors who themselves don’t really know how to fix you. I see one of the top PANS doctors in the world, but whenever I see her, there’s a new study out, and she suggests a new treatment. If she’s one of the best and at the heart of the research, then I wonder how much worse it might be working with doctors who are less experienced…
I’m definitely against needlessly drugging people with anti-psychotics to make them compliant, yet not actually helping them. I’m not a fan of them, but unfortunately, I have to take a low dose of Seroquel to sleep every night. I literally wouldn’t sleep if I didn’t take something. It definitely helps my anxiety, too. On the other hand, SSRIs have always made me suicidal, so everyone is different in terms of what helps. I’m glad you have been helped by SSRIs and 5-HTP. I might have to look into 5-HTP for myself…
There’s so much pseudo-science and quackery in the Lyme community, too. There are “Lyme specialists” and clinics who falsely peddle hope in order to steal people’s money. Even the ones who have patients’ best interest at heart are still learning as they go. Research can’t keep up fast enough with those of us dealing with these so-called “controversial” diseases today.
Our daughter’s doctor has asked us to do the Cunningham Panel. It’s costly and we don’t know how important it is to have this test done. She’s been fighting this battle for four years and is now 21.
Hi Tiffany, I’m sorry she’s been struggling so long. I can certainly relate. PANS is still a clinical diagnosis meaning that diagnosis isn’t solely based on tests. You don’t have to have the Cunningham panel to prove that you have PANS. I think some doctors want the Cunningham panel to confirm that symptoms are from an autoimmune process as opposed to being symptoms of Lyme disease itself or just psychiatric illness. I think my insurance covered half the cost, but it was still ~$400. Other kinds of autoimmune encephalitis are diagnosed by finding the antibodies, so maybe PANS doctors are ordering it to help make PANS seem more legitimate. I think it’s always good to have more data, but honestly, my diagnosis was just as much based on my response to steroids and antibiotics. Everyone’s case is different, but maybe you could ask if there are any alternatives since it’s so costly?
I understand what you mean by having died, your personality stole from you, doctors treating your disease like it’s JUST mental illness and all…I am still not like myself today, I behave rudely, I lack empathy, I have a constant ‘depression’-like state (though I don’t find life meaningless or anything remotely negative thoughts). Even with antibiotic treatment that’s definitely working I still have a long way to recover ”myself”.
Oh, and the worst thing we can do is read idiotic articles on the web. We’re boiling because our life has been stolen due to misinformation and we know just how damn dangerous it is for anyone with such diseases.
Stay strong and keep writing. 👍👍👍👍
Thank you! Yes, I usually avoid articles by the ignorant hahaha. I think I know what you mean about the depression-like state. I just feel like my life is empty and I lack the motivation/interest to do the things I normally love–even though I’d really like to do more than I am. It’s hard to explain to other people, if this is what you’re talking about. I hope you keep getting more and more of yourself back! Thanks for commenting.
Thank you for your very informative and honest article. My 22-year-old son suffers from what is thought to be PANS X about 5 years. I appreciate your blog very much. Thankfully, we also found help at a California PANDAS/PANs clinic. Keep writing. I appreciate and find your perspective and insight very helpful. Your story has a lot of similarities to my son’s. I agree that both traditional and non-conventional treatments have been key to the progress he has made to date.
Thank you again!
And thanks for this comment and for following my blog! I’m glad you’ve found my writing so helpful. I’m happy to hear that you have been able to find help for your son! It’s much too hard finding doctors to treat PANS when you’re not a little kid like everyone thinks you have to be to have PANS. Glad he’s making progress!
Thank you for your very correct and informational article. Please continue to get this information out to parents, teachers, doctors, and school nurses. Each life you touch will be the next one helped from this blood brain barrier problem. It takes a village and you are helping so much. Thank you💕
Thanks so much for reading and helping spread the word, too, Sheryl! I don’t intend to stop writing until all of this is common knowledge in the medical community. Too many people are suffering needlessly when effective treatments exist. Thanks for the kind comment! <3