My dd8 has been receiving IVIg every 4 weeks for the last two years for an immune deficiency diagnosis. She is likely headed towards a dx of chronic, congenital lyme's as well (IgeneX results should be here next week). CD57 was 19.
I'm wondering if there are others here who are receiving IVIg either because of a PIDD dx or strictly for their LD? Do you feel that IVIg has helped or hurt your recovery? Do you experience herxing with every IVIg tx? Just looking for some input-thanks!
Posts: 131 | From Nebraska | Registered: Apr 2011
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susank
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me - will reply when i can think. in meantime you can search/read my posts here.
-------------------- 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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susank
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ps - i am considered lyme negative - so i cannot provide much help that regard. i am taking ivig for subnormal IG total and subclasses. i guess that is CVID? i have lots of symptoms that fit LD as well Sjogren's and fibro. am neg on sjogren's tests FWIW. have tested pos on the usual viruses in the past. i don't know what has made me so sick. CVID is just a part of the problem. whatever else i have i pray the ivig will do something against it. Lyme? I wish I knew for sure if I have it or not. if not lyme - then what is causing so many reactive bands for me. and for IG LD WB antibodies - could CVID play a role in lesser ability to produce them?
-------------------- 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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Razzle
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Yes, CVID could affect a person's ability to generate antibodies to Lyme. IvIg may help.
My doctor says his other Lyme patients who have tried IvIg have seen excellent results with their Lyme treatment. He was trying to talk me into trying IvIg, but I'm reluctant because it is a blood product and I already have plenty of other issues without adding anything else.
I do have a deficiency of T-Cells (with intermittant low B-Cells) but no deficiency of any of the immune-globulins, so I don't fit the diagnostic criteria for CVID.
But the low T-Cells do impact my ability to fight certain types of infections and also because it is the CD8+ T-Cells that are most affected, I develop inflammatory and/or allergic issues very, very easily.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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susank
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Nemom - a thought: was your dd on IVIG when blood pulled for Igenex? ie recent infusion? wonder if that might skew results? others that know more than I do - what do you think? if effected - much moreso the IG values than the IM (IVIG could have a trace of IM). Or do I have this all wrong? i went off IVIG for four months - decided to re-start it - and right before doing so did another Igenex WB.
-------------------- 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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Yes-blood was drawn three weeks after most recent IVIg. She has also been on proabx for the last two years so I'm thinking her WB is either going to light up like a Christmas tree or will show nothing.
99.9% sure she has congenital LD. My recent WB was positive by LLMD standards with bulls eye rash 20 years ago so definitely prior to her birth.
Posts: 131 | From Nebraska | Registered: Apr 2011
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My husband has been on IVIg for about three years now. His Lyme/babesios manifested as an autoimmune condition dermatomyositis which is what qualified him for the IVIg. IV antibiotics and IVIg returned him to the living and he's about 90% back to normal. He has been off all antibiotics now for over a year and a half and just get the IVIg.
As far as herxing, he definitely herxed or had a reaction in the beginning. Each course the reaction was less and less.
Posts: 984 | From San Diego | Registered: Nov 2006
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Tracy9
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My son has been in Lyme treatment for about 3 years, off lately. He was just diagnosed with an immune deficiency and will be starting IVIG. They want to hold off on the Lyme treatment for a while longer to see how the IVIG works to abate his symptoms. Then he is scheduled to resume IV antibiotics.
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
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NEMom - results back? Hoping you will post.
-------------------- 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
Her results are back. IgM 41 IND 58 + 83-93 IND
IgG 41 + 58 +
CD57 was 19 HHV6 was 6.89 EBV was + last year
negative on Babesia, MycoP & Bartonella. We know she doesn't make Ig's for strep so I'm never comfortable that any negative test results are truly negative.
Posts: 131 | From Nebraska | Registered: Apr 2011
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susank
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Questions for anyone doing IVIG.
Have you lost weight? I have gone from 111 to 102 pounds over two months since re-starting treatment. Doctor now wants me to have CT scans w and w/o contrast. (I swore I would never do a contrast scan after weird reactions years ago).
My issues of dryness seem to be worse - eyes etc. Now constipation? Is IVIG drying to the body?
-------------------- 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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The majority of lyme and tickborne patients who receive IV IG have peripheral neuropathy. Think there may be a more technical term used for that -- think it is something like CDIP. For that condition it is my understanding that the treatments hlep maybe 50% of patients.
Here is a link to a lyme patient who also had an underlying immune deficiency I think. Appears to be a success story.
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