posted
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.
Posts: 315 | From USA | Registered: May 2005
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posted
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.
Posts: 10 | From North Carolina | Registered: Nov 2013
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posted
Sorry no experience with IVIG, but I have heard mildly positive stuff about it.
Posts: 10 | From North Carolina | Registered: Nov 2013
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posted
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
Posts: 479 | From nj | Registered: Nov 2000
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posted
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.
Posts: 8981 | From Illinois | Registered: May 2006
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
hopingandpraying- is he better now? Thanks.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
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.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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!!
Posts: 3771 | From around | Registered: Mar 2008
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