Announcement: PANS/AE/Lyme Teleconference Tomorrow!

Hi everyone, I’m excited to share that tomorrow (Saturday) is the launch of the first-ever teleconference support group for teens and adults with PANS, AE, Lyme and other similar/related conditions.  Let this be your official invitation!

Join me at 2PM EST (7PM GMT) tomorrow.

Call (605) 472-5395, and enter the meeting ID: 339705. 

International numbers…

  • United Kingdom: +44 330 998 1320
  • Germany: +49 221 98203452
  • Sweden: +46 8 420 020 30
  • Denmark: +45 93 75 41 50
  • Norway: +47 52 90 06 78
  • India: +91 172 519 9257
  • Ireland: +353 1 907 9734
  • Poland +48 22 263 97 36

Click here for even more countries.

So What’s it all about?

My vision is to have a safe space where teens and adults with these illnesses can meet and talk to others going through the same things.  Although there are already some Facebook groups, not everyone has an account or wants to share with strangers in that setting.  Hence, the teleconference format.

It’s lonely and hard to discuss so much of what we face with friends from “real life.”  And there might be things you want to talk about with someone other than your parents, too.  (Sometimes I feel like I dump way too much on mine and wish I had friends I could turn to who understood.)

Although I’m glad for the many online support communities for parents, it’s sad to me that there’s almost nothing for those of us who actually live with PANS ourselves.  I realized that my large following has put me in a unique position to be able to change this.

(If demand exists, perhaps I’ll do something for parents in the future, but I felt like I needed to start with other patients themselves since there’s so little for us as it is.)

How does it work?

It’ll be an hour or two long, and you’re welcome to come and go or even just listen if you’re too shy to say anything.

I’ll start the call saying a few words on the theme of the month to get the conversation going, and then we can all discuss it.  At the end, there’ll be a time when you can bring up anything else you’re dealing with that might not have come up in talking about the theme.  It’ll be informal, and it may evolve over time once I see what people are looking for.

Check out the Facebook event here, and share with anyone who might be interested!

This may be the first meeting, but it shouldn’t be the last!

I’m calling it “Second Saturday Strength” because if it goes well, it will happen on the second Saturday of every month.  I hope to see many of you soon! 🙂


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My Illness Made Me Feel Like a Freak: Why I’m Done Trying to Be “Normal”

For the last twelve years of being sick, I’ve been embarrassed by all of the ways my disease makes me “different” from everyone else.  I may try to fit in, but I’m always waiting for the moment when people discover the truth about me.

From not being able to attend public high school, to going to therapy and appointments instead of hanging out with friends, to living with OCD and chronic pain, my experiences as a person with PANS and Lyme have isolated me from my peers when all I wanted was to be “normal” and feel accepted.  Continue reading “My Illness Made Me Feel Like a Freak: Why I’m Done Trying to Be “Normal””

On the Radio Today! A Special for PANS Awareness Day 2018

Today is PANS Awareness Day 2018.  There’s so much I could write as someone who has lived with PANS for most of my lifeeven more than I’ve already said in the 100,000+ words I’ve written in previous posts on this blog.

However, I’m doing things differently this year, and instead of posting about PANS awareness, I’m going to speak on national talk radio.  I’ll be interviewed on Worcester, Massachusetts’s John DiPietro show along with some New England PANS Association board members and a PANS parent. Continue reading “On the Radio Today! A Special for PANS Awareness Day 2018”

These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine

Brain MRI.jpg

In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease.  However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms.  It was then that I realized the truth wasn’t always easy to accept: Continue reading “These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine”

Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS

This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:

“Treatment for children suspected of PANDAS is generally the same as standard treatments for [Tourette Syndrome] and OCD. These include therapy and medications…”
Continue reading “Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS”

Do These 7 Symptoms Make College Impossible?

They say that “school refusal,” or a deterioration in school performance, is a hallmark symptom of PANS/PANDAS.

Continue reading “Do These 7 Symptoms Make College Impossible?”

Is This a Nightmare Come True?

Sometimes, you don’t get to wake up from your nightmare…

Lately, with each day that’s gone by, I’ve slipped farther and farther into the abyss of my inflamed brain. I’m in a bona fide PANS relapse—there’s no denying it now.

As it turns out, I’ve had too much faith in my Lyme/co-infections antibiotic protocol. Continue reading “Is This a Nightmare Come True?”

Why PANS Awareness Saves Lives

For the last eleven years of my life, I’ve battled a debilitating yet misunderstood autoimmune disease called PANS. It’s a disorder where an infection or an environmental trigger confuses your immune system into attacking your brain. This leads to all sorts of problems like OCD, anxiety, depression, tics, involuntary movements, cognitive problems, and many more horrible things.  It affects at least 1 in 200 people, but you’ve probably never heard of it.  Many doctors haven’t, either.

Continue reading “Why PANS Awareness Saves Lives”