I haven’t had time to write a longer post for a few weeks, but I just wanted to assure you that I haven’t disappeared.
I’ve been away, not because I’m ill, but because I’m well. In fact, I’d say I’m the best I’ve been in the last nine years.
Contrary to what you might expect, the more often I post or tweet, the worse I’m doing. When I’m well, I get out of the house and keep very busy. When I’m ill, PANDAS takes over my life, and I can’t do much. The only thing I can do when I’m sick is write about being sick and talk to other people dealing with this disease.
I’m not sure what happened recently, but I believe I’m finally well.
Yes, that’s right. I really did just say that: I’m well.
So what did it? I don’t think there was any one magical treatment or supplement or diet. It was a combination of everything I’ve done up to this point—and everything I’m still doing.
My first IVIG got me 50% back. The second got me to 70%. The tonsillectomy brough me to 95%, and when I switched to Azithromycin, I finally came back to myself all the way. Prednisone and Wellbutrin made my life almost liveable while I was still less than a shadow of my former self. Switching to paleo eating meant getting out of my body’s way while it worked with the other treatments to heal. (I’ll elaborate on these things in a future post…)
At the moment, I don’t even think of myself as a person with PANDAS anymore—I’m a person who beat it. Sure, I still have very small involuntary movements and some tics sometimes. And I still take medications and supplements, but I don’t feel like PANDAS has any significant effect on my quality of life.
Whether this present health and remission is permanent, remains to be seen. I could flare again when I’m exposed to Strep. Who knows?
I’ll be heading back to college soon, and I’ll finally be taking a full load—including one of the most difficult classes in my major. But to me, being able to work hard is a privilege.
So, readers, that’s all I have for now. I just wanted to share with you that I’m doing very well for a change—and I wish the same for you.
But don’t worry… I promise this blog isn’t going anywhere—I actually have quite a few posts that are almost ready (but I haven’t had time to finish them). I’ll write more when I can.
I wish all of you a Happy New Year full of health and healing!
14 thoughts on “New Year News”
This makes me so happy . It gives me hope for my grandson who is only 10 and struggling with Pandas. Happy New Year !
Hi Mary! I’m glad to know that this gives you hope. Hang in there. People do get better from this!
It’s encouraging to hear your good news. I went to your contact page and asked a few questions. Were your IVIGs low dose or high dose? Were they covered by insurance? Are you anywhere near DE?
Hi Tiffany! My IVIGs were both high dose. The first was partially covered by Cigna after we reached our deductible, but the second has been denied by Blue Cross/Blue Shield (my dad’s company changed providers). I just responded to your emails with more information.
Wonderful news……..wishing you a great year!!
Thanks. I hope you have a Happy New Year as well!
So happy for you. I can hear this in the “voice” of your blog for today.
So happy to hear you’re doing well!!!
Thanks! I hope you are, too.