PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

IVIG: Intravenous Immunoglobulin from 1000 donor antibodies...

IVIG: Intravenous Immunoglobulin from 1000+ donors

So I just got back from IVIG, and it really wasn’t that bad. I did it over two days, with the first day lasting about four hours and the second for six. I still have headaches from it, a bit of nausea, and some fatigue, but I don’t really care, because I feel hopeful that the therapy will give me my life back.  These temporary side effects are such a small price to pay for my freedom.

Now, I just have to wait for the positive effects to kick in—and hope and pray that they actually do kick in at all. Apparently, for most people, it takes three to six months to see a big improvement, but sometimes you start feeling better in a couple weeks. It can take up to a year for all the PANS/PANDAS symptoms to disappear completely. Occasionally, IVIG doesn’t work at all. But my nurse said to me, “Don’t worry. If you responded really well to steroids, IVIG is going to work.”

I don’t usually show my emotions much, but I broke down and cried as soon as she said that. Could one IVIG really heal me? Yes, it should. The thought that this eight-year ordeal is going to end and the idea that I will know what it’s like to feel good again—well… It’s overwhelming. But I’m ready for it.

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Comments on: "IVIG and the Waiting Game…" (10)

  1. […] couple weeks later, a specialist confirmed my PANS diagnosis, and I received IVIG to more permanently stop my symptoms. A case of mono and a Strep infection had tricked my immune […]

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  2. […] time I’ve had this treatment, it’s taken a different amount of time to work. The first time, it was two months, and then it stopped working another two months later. The second time, I […]

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  3. […] week, I celebrated the one-year mark since my first IVIG. It’s hard to believe it’s already been a year, yet my recovery has seemed to go so much slower […]

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  4. […] so much in the last year of blogging… I finally got an official diagnosis of PANS. I had two IVIGs. I spent almost a year on Prednisone (and am still tapering off). I’ve had more horrific […]

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  5. […] I underwent high-dose IVIG therapy in August, for the first time since I got sick eight years ago, I was hopeful about making a full recovery. I […]

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  6. […] is the three month anniversary of my IVIG treatment. It’s hard to believe it’s already been that long, but at the same time, it seems like […]

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  7. […] everything is exhausting.  I just want to be normal again, but I’m afraid to believe that the IVIG is going to make me better because I’ve been let down so many times over the years with other […]

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  8. luck not look sorry haha

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  9. I wish you the best of look in recovering! You deserve the freedom!

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