I took IVIG about 8 yrs ago..50g per month then I lost my portacath after 2 yrs. and switched to Hizentra subQ 20g per month.
Looking back that is when I statrted going downhill. Getting another port this wkend, back on 50g per month. Wondering who is getting IVIG and has it helped them much.
Dr K in CT is the one who put me on the high dose IVIG. Looking for feedback, replies, etc.
Posted by Charles555nc (Member # 42654) on :
I think lyme is so antibiotic resistant now (I believe it is a released bio weapon re plum island). But theres encouraging evidence of the newer antibiotics, vancomyacin/daptomyacin being highly effective in "chronic" (persistent) lyme.
Posted by Charles555nc (Member # 42654) on :
Sorry no experience with IVIG, but I have heard mildly positive stuff about it.
Posted by Theresa (Member # 421) on :
I have had three ivig treatments so far. It's too soon to tell. I have one every e week for three hours. It is it is autoimmune...chronic inflammatory demylinating polyneurapathy. Good luck with your treatment. My doctor said I might not see results for 3 months. Theresa
Posted by hopingandpraying (Member # 9256) on :
My son had two years of IVIG (two days every eight weeks) to treat his infection-induced auto-immune condition. It somewhat increased his energy, but did not resolve his chronic pain, irregular sleep pattern and memory problems.
Posted by surprise (Member # 34987) on :
hopingandpraying- is he better now? Thanks.
Posted by hopingandpraying (Member # 9256) on :
surprise - no, he has more fatigue as his adrenals are stressed.
Posted by 2young2dieMom (Member # 25434) on :
I've had ivig for 2 years now because my breathing would stop at night. I was down to 42?% lung capacity, unable to climb stairs, or hold up my head. I had taken every abx possible for 2 years prior to that but they just stopped working.
The ivig brought me back to life. I've platued at 70% lung capacity but regained a lot of my strength. I'm also taking minimal abx. I still have some trouble breaking at night and use a cpap w/oxygen. I hope you have good luck.
Posted by Rumigirl (Member # 15091) on :
I recommend going back to it, especially with your situation. Higher frequency is often used for peripheral neuropathy, which might help you even more.
IMO, though, you do need abx and/or other antimicrobials with it, too. When you are that ill, I believe people need abx, unless you either can't tolerate them, or have found other methods work for you.
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by 2young2dieMom: I've had ivig for 2 years now because my breathing would stop at night. I was down to 42?% lung capacity, unable to climb stairs, or hold up my head. I had taken every abx possible for 2 years prior to that but they just stopped working.
The ivig brought me back to life. I've platued at 70% lung capacity but regained a lot of my strength. I'm also taking minimal abx. I still have some trouble breaking at night and use a cpap w/oxygen. I hope you have good luck.
I'm so glad to hear that you are having a positive experience with IVIG! What a scary diagnosis and symptoms you have had!!