posted
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!
Posts: 141 | From East Coast USA | Registered: Sep 2010
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
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.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
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.
Posts: 141 | From East Coast USA | Registered: Sep 2010
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
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.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Yes, demonstrated in peer review studies to help.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Rumi - may I ask - what dose are you on for PN?
It's generally higher than for immune deficiences, isn't it?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It's .5 grams per kg for PN.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
, 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...):
-------------------- Teri Posts: 63 | From Hampton Nh | Registered: Nov 2013
| IP: Logged |
posted
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.
Posts: 697 | From CA | Registered: Dec 2011
| IP: Logged |
posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
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.(:
-------------------- Teri Posts: 63 | From Hampton Nh | Registered: Nov 2013
| IP: Logged |
posted
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?
-------------------- 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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic