My neuro is suggesting IVIG treatment for me, as an option.
I have read through past posts on search, but was wondering if anyone who was doing this therapy before has more to share.
Thank you! Posted by zipzip (Member # 6226) on :
i've been on it for a while and was expecting a lot more from it. but my insurance covers it 100%. the first few infusions may make you feel like complete crap after.
it will boost your immune system, but you still need abx to kill the spirochetes. the IVIG can help proliferate that action.
my immune system markers have gotten better, but my circulating immune complex (C3D test) is still very high, which denotes that my body still has an active infection.
best of luck...
Posted by Littlesprout (Member # 7406) on :
My LLMD started me on 20g IvIG every 2wks, 3 months ago per Neuro LLMD, Dr K, increased me to 50g every 2 wks (115 lbs) I don't know how much it has helped, I know it can't hurt. I feel a boost the day or two after the tx that last for over a wk. My friend has been getting them for 5yrs (neuro lyme) he tells me to stick with it, it took him 1.5-2yrs to feel the difference. Of all my lymie friends, he is doing very well.
Posted by oxygenbabe (Member # 5831) on :
It helps me, but I only get 5 grams about every week. I had a sort-of-flu for 10 days (low grade fever, sore throat, stuffy, fatigue worse than usual etc). The fever went away on saturday and sunday finally but I still felt totally wiped out. I noticed during my IVIG on Monday, about halfway thru, I felt very hot, flushed, and somewhat feverish. I felt flue-y again. I could tell it was killing something.
I don't think it directly combats lyme. What is does is "even" out your immune system--by giving you passive exposure to HLA subtypes that may not be as reactive, AND, it fights off other stuff. Your immune system is freer then to fight the lyme. IMO.
Posted by Samantha (Member # 3198) on :
This is a very interesting thread. My 24 year old daughter is on IV IG. I think it has helped her cognitive issues but her fatigue is still a major issue.
Any other IV IG patients out in Lyme land?
Thanks!
Samantha
Posted by achey (Member # 6284) on :
up please Posted by Neil M Martin (Member # 2357) on :
Before a LLDO clinically diagnosed Lyme my HMO neuro treated me for Guillain Barre (what he thought caused my paresis).
IVIG (1 gram per kilo: about 90 g for me) gave me partial temporary strength gains, but did nothing for my rashes or my flu like symptoms. I had 11 sessions of IVIG from 8/19/997 to 5/10/99. All that time it was like being on a roller coaster form hell. And I felt sick sick sick.
Having osteomyelitis removed from my jaws helped me feel better and stronger and reduced the need for IV from every 4-12 weeks to every 6 months.
No guarantee IGVIG is free of Hep B or C or HIV --but supposedly the chance of infection is low.
I began IV and oral antibiotics for Lyme disease 5/17/99. Since then my paresis has waned while I was on antibiotics. My HMO plan was to only offer IVIG when I was dangeroiusly weak and in danger of respiratory arrest.
But if I was off ral antibiotics I'd qualify for the HMO' IVIG in 2 weeks or so.
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