posted
For those of you who have done IVIG, do you think it helped. My LD brought it up. I haven't responded to many things. (hardly any).
I'm not even sure exactly what it is or how often you do it. Is it something the ins won't pay for?
Posts: 847 | From upstateNY | Registered: Dec 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
We have a group on www.lymefriends.org called IVIG, as an additional resource for you. There are also recent thread on here that discuss IVIG, you might try the search tool or just scroll down.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Insurance won't pay for it for Lyme disease but they will pay for it for certain autoimmune conditions. IVIg combined with IV antibiotics really turned things around for my husband. Oral antibiotics weren't enough for him.
Posts: 984 | From San Diego | Registered: Nov 2006
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I just tried to join lymefriends to research IVIG. Could not join without photo profile? USA not offered as country? Must give full name?
-------------------- 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
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posted
susank.....when i first tried to join lymefriends I thought the same as you......you can add any pic such as a landscape or something and as for name..i didnt put my full name just initials..it was accepted......but i do find it difficult to navigate the site so i dont go on that often.............
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
It looks overwhelming at first. The tabs at the top navigate you through the site, each tab takes you to a location. If you just concentrate on them, you will get everywhere on the site. There are only a few stops, really.
If you click on the tab for groups, you'll find the IVIG group. If a group hasn't been used in a while, but you post in it, then it goes to the "top" and generally becomes active again, because it shows on the front page.
You can put anything you want down as a name. Daffy Duck (though I don't recommend that, it would alert the moderators.) Few people put down their full name. USA is on there.
It's a NING site, we didn't create the platform. But if it's not your thing, that's ok, too!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I did join once a long time ago, but found it difficult to navigate so "unjoined". I can't handle much these days. Having to use my brain too much just stresses me out.
I have done some research on IVIg, and the cost is astronomical. No way, especially given the fact I got gamma shots and they didn't help me.
Posts: 847 | From upstateNY | Registered: Dec 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I am a computer dumbdumb in regards to photos. One has to load a photo - just to read - not even joining?
-------------------- 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
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
You can only read the front page without joining. Again it's the way Ning sets it up; it's just a platform that we pay to host the website. It's all prepopulated so we don't make the rules. I'm not very computer smart either, but you just click "browse" and you can add a picture. Most computers come with sample pictures so some people actually just upload one of those.
I wish I could help you more....if you want I'll set up a profile for you and I can just put up a random photo. You can email me and tell me what information you want to put in, then you can just change your password if you like, your info, etc.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Tks Tracy - will send email.
-------------------- 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
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