I was wondering whether anyone out there has, or is, undergoing IVIG? My doctor brought it up as a possible thing to try for my neuropathy.
If you have had this treatment and could give me some idea of how it went for you, I'd really appreciate it. Also, if you know of any infusion clinics in the MA area, please would you drop me a line? Thanks!
Posted by Sammi (Member # 110) on :
Hi Splashi1, there are a few of us on the board who get IVIG. I am not familiar with it as a treatment for neuropathy, hopefully others are. It is extremely expensive.
There are several posts here you can read. Type in "IVIG" after clicking on the search icon near the top right of the screen under "post a poll."
You may also find some helpful information at the Immune Deficiency Foundation site.
Posted by Splashi1 (Member # 28173) on :
Hi Sammi,
Thanks so much for your reply. Unfortunately, I don't seem to be able to use the "search" feature from my computer and I can't figure out why that is. I have tried a number of times but never seem to have any success.
Posted by Sammi (Member # 110) on :
Hi Splashi. I don't know why you cannot search, I am sure it is frustrating. Maybe a moderator can help?
I checked and there are 25 pages of posts with the word IVIG in them! I tried to copy some of the links for you, but even when I logged out and copied them my account is still accessible. Sorry!
Hopefully someone can help you with the search function.
Posted by oxygenbabe (Member # 5831) on :
Yes, demonstrated in peer review studies to help.
Posted by Rumigirl (Member # 15091) on :
I've been getting it for several years now for peripheral neuropathy. It is helping, although treatment for the infections is needed along with it.
It also helps a lot with my immune system, as I no longer get other illnesses, now, like the horrible asthmatic bronchitis I used to get.
It's rebuilding my nerves that were lost. I used to have NO reflexes whatsoever---none. Now I have some, and they are increaseing. Considering that I had that since I was a young child, that's significant.
Go for it.
Posted by susank (Member # 22150) on :
Rumi - may I ask - what dose are you on for PN?
It's generally higher than for immune deficiences, isn't it?
Posted by Rumigirl (Member # 15091) on :
It's .5 grams per kg for PN.
Posted by sheltielady (Member # 42710) on :
, Hi Rumigirl Where do you for treatment -home /hospital How often? Does your insurance pay 100%, if not what do you pay How did they diagnose your problem?
I am seeing a Neuromuscular Doctor Monday.
Sorry for so many questions...):
Posted by mlg (Member # 35383) on :
I did IVIG and it helped my body pain for like 2 days. I did what they called an IV push for this at a top notch doctor and it cost me about $100.00. It help with body pain...but it gave me the worst crash I've had (horrible brain fog). Never did it again.
I would do anti-malarials and anti-parasitics.
Heparin.
Detox methods.
Posted by seibertneurolyme (Member # 6416) on :
From discussions with other tickborne patients over the years it is my understanding that in general IVIG is about 50 percent successful for neuropathy. But as Rumigirl indicated it needs to be combined with antibacterial and or antimalarial treatments,
Bea Seibert
Posted by sheltielady (Member # 42710) on :
A doctor I spoke to recently mentioned she had a patient with lymies and just the IVIG treatment clear his CIPD and lymes. Yes everyone is a different mold.(:
Posted by Splashi1 (Member # 28173) on :
Thanks so much for all you your input!
Posted by 2young2dieMom (Member # 25434) on :
Teri, I have been getting IVIG 2 times a month for 2 years now. My breathing was so difficult before I started that my dr was going to put me on a respirator.
I never tested positive for Lyme but very positive for the Fry bug - and nothing else. I've been on IV rocephine and numerous oral abx. I diagnosed with ALS five years ago.
It is a constant battle to preserve my ability to breathe. When it gets difficult I have to try a new abx. Right now, I'm starting Bicillin along with the IVIG. Seems I need both to stay alive.
I've regained much of my strength and most people don't even know I'm sick. I don't work because stress really makes my breathing worse.
Do you have an ALS diagnosis?
Posted by Lymetoo (Member # 743) on :
Teri has not been here in over a year.
Glad to hear that you are being helped by the IVIG and the bicillin!