susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
How long to be off Gamma replacement to get all the antibodies out of one's system?
FWIW I had been infusing SubQ - last infusion May 5th.
New allergist/immuno says with my baseline IGG I probably don't need Gamma replacement.
Strangely - my IGE level rise and fall with my IGG numbers. Higher IGG levels - higher IGE. ***
I have wanted to stop doing infusions for so long - but being off two months I realize I need it.
I have had infections this summer - normally that does not happen - usually only in the winter.
Anyway, new doctor wants to test IGG and IGE now - at ten weeks. I was thinking wait at least 12 weeks/three months.
In the past my baseline total IGG has been mid 500's - one time was 509. New doctor says not low enough to need replacement - I could do prophylactic antibiotics. Yuck.
This doctor had presumed that I had previously done the vaccine challenge and failed it - so I had been getting Gamunex from him. Until I mentioned no challenge had been done.
It was not required by my past and present insurance company. In fact I have authorization from my insurance company for another 1.1/2 years of Gamunex.
I realize I should have done the vaccine challenge - did not know about that - first doctor did not mention it. Although......I really don't want to do vaccinations of any kind.
So......I want to know my true baseline - off Gamunex. Have read 3-4 months?
Assuming my IGG levels come back above 500 - this doctor will require the challenge.
(My total IGA is low/out of range - in the 80's).
If I pass - then no Rx Gamunex from him.
Sometimes I think Lyme disease is what caused my total IGG to drop - what that would mean in regards to making antibodies to vaccines - dunno.
So tired of all this....... Any help appreciated. Thanks.
***To edit/add: this doctor says true immune deficiency one does not have high IGE levels. This complicates things......I have read where it is rare - but can happen.
-------------------- 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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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I don't know the answer to your question but have been off subq since April. I asked for a break in addition to wanting to see how I do without it.
I don't plan on getting labs until October. Just picked that month.
I also wanted to see what happens to my IgE without it as I noticed when we decreased the number of Gms, my IgE went down.
Since I'm doing LDA for allergies and never was bothered by them prior to Lyme, I'm curious to see if the IGG have something to do with it now.
I don't think so totally as my IgE was very high prior to going on it.
I was surprised to see your IgE changed like mine. It's perplexing.
BTW, I did have the challenge. Tetanus and Pneumovax.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Thanks Pocono.
I had written weeks ago about IGG and IGE. Listed my levels over the years.
I found another person on another board - same thing - IGG and IGE rising/falling together.
-------------------- 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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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I'm sorry SusanK, it sounds like you need to get the vaccine challenge to properly identify your true immune deficiency.
If your IGG drops yet IGE remains high, there is an immune disorder called Hyper IGE syndrome. Your doctor could do some further lab testing to help with diagnosis.
Remember, they have to put together the whole picture. So since you have chosen them, try to be patient and trust them.
If this doctor is unable to put the pieces together, then they should refer you to a clinical immunologist for evaluation. A clinical immunologist is like a super specialist for immune deficiencies. (Just like LLMDs are super specialists for Lyme patients.)
Posts: 5237 | From here | Registered: Nov 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Edited post re: Labs and Serotypes
Sammy, thanks for responding. I am planning on doing the vaccine challenge soon. I realize I should have had it done years ago.
How do most folks do this? Not sure if doctor's office has the vaccine/s.
Years ago I had the Pneumococcal titer test done twice - both times at Labcorp. 14 Serotypes. For whatever reasons - no vaccines done - titers not retested. I don't think it means anything but out of the 14 I had 11 under the "protected" level.
I checked the Labcorp test menu today - and the humoral immunity panel is temporarily not being offered. (Why am I not surprised?).
Further research - Quest does have the 23 serotype test. !!!
I plan to get my total IgG and IgE tested next week. I hope eleven weeks off SCIG will be enough.
Otherwise this will be interesting.
Yes - wish I could see a rock star immunologist.
Since I have an immune deficiency and allergies I thought it would be a good idea to see a doctor that treats both.
To edit/add: When I first starting seeing him mostly things went smoothly. Not so of late.
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