posted
If you've had IVIG, what was/is your dosage per kg of body weight? How often? How slow is your drip? What premeds do you take? Did you have a loading dose the first time?
If it's not ok to post these here, a PM would help me tremendously.
Also, what diagnosis got it approved for you? I'm wondering if the diagnosis affects the dose you can be approved for.
As always, thank you tremendously!
Posts: 748 | From Texas | Registered: Feb 2015
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
What is your diagnosis for IVIG? Have you been qualified - preparing for first infusion? I'll try to answer more as soon as I can and have more info from you.
-------------------- 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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WPinVA
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Member # 33581
posted
I don't have an answer, but can you please post more when you learn more, share any responses from PMs, etc?
I would like to learn more about IVIG too. I have an immune deficiency so IF I ultimately get IVIG, it would be based on that.
Posts: 1737 | From Virginia | Registered: Aug 2011
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susank, I haven't been qualified yet, but my insurance is amazing and very lax, so I really don't think I'll have a problem getting it approved. They have approved everything (Rocephin, etc) with absolutely zero problems so far.
I had a skin punch biopsy that came back low normal, so we can't use that... I had blood drawn for IgG and IgM testing yesterday (not subclasses, just total overall), but I suspect they will come back OK. I've had them tested once before.
It is possible that we may try for IVIG with just my POTS diagnosis. It is well-documented with tilt table tests. They say that its next to impossible to get it with just POTS with most insurances, but I really don't think it will be a problem with mine.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
I just went off ivig last month. I was on it almost year. I don't know what the dosage was per my body wait. It was a 3 hour infusions .
I premeditated with prednisone and benedryl and ibuprofen. I was given this protocol after being diagnosed with chronic imflammatory demylinating polyneuropathy, an autoimmune disease. my ana was posive, anticardiolipin high. Of course the usual
suspects, lyme, babs and bart and assorted viruses and parasites. I was approved by medicare. I think it helped the neuropathy but did not cure it.I am with an integrative doctor now and we are trying
other alternatives. I had to stop abx due to liver.
hope this helps. Theresa
Posts: 479 | From nj | Registered: Nov 2000
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posted
Thanks, Theresa, very good to know! Did you take abx while doing IVIG?
I had read that sometimes prednisone is used as a pre-med, but I've wondered if they would use it in s Lyme patient. I guess if your being pumped full of immunoglobulins then prednisone isn't quite as bad as it would be otherwise.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
I was on doxy iv and various oral abx for the first 4 month then the liver enzymes got high. I never had any bad reactions. good luck with the treatment. Theresa
Posts: 479 | From nj | Registered: Nov 2000
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posted
Honestly I'm pretty nervous about the vaccine. They test you for pneumonia antibodies, give you a vaccine, and then retest you a month later to see if you developed antibodies against the vaccine. If not, then you've been proven immunodeficient. That's my understanding anyway.
At one time I was doing something called "vaccine neutralization". My doc never really explained what was in the shot I was getting twice a week, but I think it was a vaccine. I should've asked more questions. Anyway, the last one I took gave me an unpleasant reaction, so I really am nervous about doing this.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
I relapsed this time around after getting the flue shot.also developed autoimmune disease after it theresa.
Posts: 479 | From nj | Registered: Nov 2000
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sam - would you mind sending me a PM - what city -and what immuno you see?
Theresa - are you perhaps on the IDF forum?
-------------------- 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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WPinVA, I had IgG subclasses checked a few months back and all was normal.
Posts: 748 | From Texas | Registered: Feb 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Perhaps your doctor is building a case for insurance coverage for IVIG. Or he could be seeing if you really need the IVIG.
My son has low IGG and had the vaccine challenge and passed. So no IVIG. He does ok with vaccines, but he doesn't have Lyme.
Now I have low IGG but not that low. But I catch EVERYTHING. I do NOT want to do the vaccine challenge. So I'm hoping there's another way.
My immunologist said that the IGG numbers don't always show the whole picture.
That's great that you have great insurance. My doctors are telling me that it's very hard to get coverage for IVIG.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
That's what he's doing, trying to build the insurance case for IVIG. He said he is sure I have small fiber neuropathy (my biopsy was on the low side of normal), but he says that convincing an insurance company is another matter.
I catch everything too, always have even before I knew I had Lyme. I really don't want to do the vaccine challenge either. Posts: 748 | From Texas | Registered: Feb 2015
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posted
I game 50 g IVIG every 3 Wks. Not per body weight. Gamanex C. Suppose to be the best type. Have Cigna. Hubby had to go to his HR for coverage
Posts: 315 | From USA | Registered: May 2005
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