IVIG update

[Guest guest]

Greetings,I' doing really poorly right now, but wanted to let you

know the outcome of my IVIG saga.

I want to thank everyone for their immense support and suggestions

on my IVIG infusions. Thank you and Sue for your timely email.

I really needed it. You can't imagine the comfort of finding

something in your email inbox besides penal enlargement ads.

I saw the doctor last week and he has changed infusion companies to

one agreeable to administer my IVIG in six hours instead of like the

last company who insisted that despite my extreme reaction, I should

be able to receive the dose in three hours.

I really find some personnel and companies exhibit an arrogance that

should be taught to groups of insecure individuals.

This infusion company felt it was irrelevant that my lung muscles

were spasming so severely I could not breathe. They just kept

pumping steriods into the IV line so that they could continue their

rate of flow to their liking.

So this new company has agreed upfront to the longer rate of

delivery, the only problem is we have to go the whole route through

insurance approval again. I'm confident it will get through, but

being that it took three months with the last submission.

I still find it incomprehensable how quickly rescue efforts can

spring into action when there is a few beached whales on off some

shore, but to get a person life saving immune globulin, it

practically takes an act of congress.

I guess until you've been there, you just can't be expected to

understand the profound irony of that comparrison.

All week I've been fighting sinus infection, digging through my

arsenal of antibiotics trying to think straight when every system in

my body is on vacation. ID doc prescribed 100mg minocycline twice a

day, but for what I'm not sure. I had to rescedule my gum surgery

because the surgeon wants to do it right after a full load of IVIG.

He directly contributed my periodontal disease to low IgG.

Normal IgG range is approx 700-?? . I wish that this ID doctor

wouldn't be so insistant that the gamma dose prescribed only bring

me to the low end of this range. After my last IVIG, I immediately

felt better the next day , but it only lasted approx 10 days before

I rapidly started the decent to bottom out again. @ three weeks

blood test after infusion I was in the 600 range already and at six

weeks I was once again @450

Upon receiving my second infusion I barely got any of the gamma in

me before the reaction started this time even more violently than

the first time. I keep thinking about the references being made to

low IgA and yet whenever I ask anyone, it is indicated that there

isn't any remedy for low IgA. That it is merely a measurement. Silly

me, I keep thinking that if you can shore up areas that are low, yet

not completely depleted, then you might be able to avoid complete

disaster. But I am constantly reminded that modern medicine doesn't

have anything for a failing immunity, just for a failed one. Sad.

So, here I am waiting for the go ahead, feeling like my ass is

dragging on the cold hard cement of beurocracy.

But at least it is dragging ...forward.

Peg