Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I finished my first two days of IVIG (restarting it after a lot of very bad reactions; including aseptic meningitis.)
They kept the infusion rate slow. I was at the Cancer Center for 8 hours each day. It was incredibly boring.
I had absolutely, positively no reactions whatsoever! And miraculously, I feel BETTER now than I did before! I say miraculously because I had to be up by 7 am for two days and have only gotten half the amount of sleep I normally require for two consecutive nights; normally I'd feel like utter crap by now!
Wow!!! I am REALLY feeling hopeful! Back in two weeks....looks like I'm in it for the long term!
I did find out I am getting 40 grams and the brand is Gammunex. They are premedicating me with Benadryl, Tylenol, and something unmentionable. They also give me Benadryl afterward.
I don't know if it is all the pre and post meds, the brand change, or sticking with the slow infusion rate, but I'm a happy camper!
Blake and I also unexpectedly just got a new addition to our family; a 14 year old girl we took in from another Lymie couple who couldn't take care of her (their niece.) I posted about that in General Support.
Quite a week!!! Thursday my youngest son goes to Dr. J...he is supposed to be getting a chest port, IV abx and IVIG lined up...we'll see if all that is still a go!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Wow Tracy, it is good to hear that everything went well this time, no complications and you are already feeling better!
Posts: 5237 | From here | Registered: Nov 2007
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posted
awesome girl...you deserve it!!!!
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Yeah!!! Way to go!! Thanks for sharing!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You are a warrior! Thanks for sharing. I pray it works.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
FINALLY a breath of fresh air from all your suffering. So happy to hear something is helping you feel so positive &hopeful.
blessings
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Tracy9: It was incredibly boring.
Yay, boring is good. We don't want excitement in this case, haha.
Now you can read some of those books you have stashed away. Or listen to music, or meditation tapes.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Hee hee; you are so right, Carol. I have my laptop there, too. I don't why I'm so bored. I lay at home in bed all day half the time. And like I should be complaining!!! You are so right. Boring is good.
The boring part is it makes me a little sleepy; like too sleepy to read, or go on the computer, or even watch TV, but yet I can't fall alseep. This is because they are keeping it at the lower speed I think. Usually in the past it zonked me right out, as soon as they turned up the infusion rate. So now I'm stuck in this 8 hour "zone"....where I'm too tired to focus on ANYTHING but just laying there, but can't sleep.
I will take it. I can't complain, I want my life back!!!!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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So happy to hear something is helping you feel so positive &hopeful.
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