IVIG at 25

[Hitman3161]

Thanks Mary. I took a short steroid burst, I could be sensitive to the drug. All I know is I’m feeling incredibly weak and dizzy right now.

I have no fever but I have that general feeling of malaise.

I’m having the Cunningham panel done soon it should help confirm either way the legitimacy of what I’ve been through.

i have been socially isolated for years and have experienced enormous amounts of social adversity with regards to OCD and the clinical picture of pandas as a whole.

Yes, I very much improved after abx and tonsillectomy. Abx always seem to help.

Im not sure if I’m experiencing some kind of withdrawal syndrome.

All I do know is that this ‘illness’ isn’t a progressive one, for any hope of long term recovery I’ll have to move. 

Life is hard right now, but thanks so much for your help.

 

[Hitman3161]

I hope this feeling of weakness passes. I have no experience with steroids and to be fair at this point I have no idea what my body is telling me.

I know stress at the extreme end can exacerbate the symptoms. I’m getting a course of antibiotics on Friday.

its possible I’ve picked up another infection but there are times when I’m totally fine - I’m  on and off like a lightswitch.

Ill keep you updated though I haven’t lost hope yet. And thanks again for your kind words.

 

unfortunately, there isn’t a simple treatment protocol you can follow over here - it will be quite a few years before they change the guidelines.

I was only reading a post yesterday that described how insurance companies reject IVIG on the basis of pandas because they are totally ignorant to the fact of its immuno modulatory effects!

It’s awful but I’m sure it will change one day!

There are a couple of seminars over here in the UK, but next to that there’s nothing.

Dr K is the only doctor that has offered to treat me, he told me how my response to the T&A underscores the diagnosis even further. I think after the Cunningham panel, my mind will be put to rest over the issue. But at the same time it doesn’t help me on my quest for treatment.

one thing I do need to do though, apart from staying on abx is moving away to find a better life for myself.

 

Im almost unrecognizable from how I was a few months ago. Life is extremely complicated.

thanks again though.

 

 

 

Edited August 7, 2018 by Hitman3161

[bobh]

I myself don't consider the Cunningham panel good bang for the buck.  It doesn't treat, or (as far as I know) give a better picture for how to treat.  Did Dr. K recommend it?  He has already conceded the signal from tonsillectomy improvement, so I doubt he will pronounce you non-PANS.  We decided not to spend that money in the case of our son.