Topic: My Immunoglobulin G levels lowered after Zith?? Corrected post 5/18/13
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
CORRECTED 5/18/13 due to errors:
My blood was sent to different Quest labs.
The GAM panel by itself is tested in Texas. ie IGG IGA IGM
The subclass panel is tested in California - at least it has been that way for me - which I only recently realized and pointed out to the doctor.
Along with the subclass panel the Quest California lab tests IGG serum.
I have noted that the IGG values are lower from the California lab vs the Texas lab.
Same blood sample. Very confusing.
Suffice to say that my thinking the Zith might have caused my baseline IGG to drop from ~570 to 509 was incorrect. It was not the Zith. It was two labs giving different results. This happened time after time without my realizing it - wondering why my IGG was sometimes lower than expected. The lower levels were the few times per year that the doctor requested the subclass panel.
Recently my blood was sent to both labs - I noted the different IGG values. That is how I finally solved the mystery.
Hope this info helps someone. --------
So I started low dose Doxy last week. I had decided that whatever I have - Abx is the answer. Myco, Lyme, Autoimmune, whatever.
I am taking a break from IVIG. I was on it for CVID ie subnormal or low IGG/IGA subclasses.
I had read where some antibiotics can act as DMARDs, immune modulators, anti-inflammatories etc.
For a few years I took low dose Doxy daily as prescribed by my eye doctor.
So I was organizing my blood test results and made a discovery.
My "baseline" Imm.G. level averaged 570 pre-IVIG. Normal range starts around 700. I did 30g infusion Aug.2010 and two infusions of 10g in Oct.2010. Then stopped.
Feb/March 2011 I took Zith. Off of IVIG 4 months and off Zith 2 weeks - my Imm.G. was tested. It had dropped to 509!!
Re-started IVIG 10g every three weeks with levels improving to average 740.
So I am concerned about the drop from 570 to 509 after taking Zith. That cannot be a good thing. A little research I have read that taking Abx can cause one's body to produce less antibodies?
I don't recall if Zith is considered one of the immune modulating Abx. I think that claim is made more for Doxy and Mino.
How could this also tie into Abx challenges?
The same time I tested with Imm.G. 509 - my lowest on record - I did an Igenex test. Results in my sig. line. My IGG bands stayed the same. I did however show more IGM bands.
My fourth Igenex test followed IVIG and Doxy - results not in my sig. line - but previous bands missing. ie last test showed: IGM 18+,34IND,39IND and 41+. IGG 39IND and 41++.
-------------------- 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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joalo
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Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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sammy
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IVIG must be given at least every 4wks to maintain a proper trough level. The half-life of IVIG is only about 20-29 days. When you are fighting an infection you can expect the half-life to be far less (sometimes only a few hours) because your body will use up the immunoglobulins quickly.
So if you had a wash out period of 4months without any IVIG treatments then you should expect your IGG levels to drop significantly.
I was told (by my immunologist and LLMD) that antibiotics do not cause low IGG values. Having a severe acute infection can cause a significant drop in your IGG levels. You can also lose IGG through GI inflammation and chronic diarrhea.
If I may ask, why are you stopping your IVIG treatments? If you have CVID you are going to need the IVIG for life. Antibiotics alone will not be enough to help you fight off infection. This concerns me as a fellow CVID and Lyme sufferer. Have you spoken with your LLMD and immunologist about this? Please do before you decide to stop any treatment.
Take care.
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susank
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Member # 22150
posted
Tks. I will write partial reply now.
My IGG total was tested 3 or 4 times - about once a month - before starting IVIG. My results were around 565 and 570 every time.
My result was 509 off IVIG and after having taken Zith prior to the test. I asked the doctor at the IVIG clinic about the drop and she said that Abx can/cause lowering of antibody levels.
Edited to add: I remembered that four years prior my GP ordered my IGG, IGA and IGM totals to be tested. Back then my IGG was 571. So my "baseline" IGG could possibly be 570. It was in 2006 and 2010. No Abx. The 509 came after 4-6 weeks on a hefy dose of Zith. Who knows? After restarting IVIG and during that time I took six weeks of low dose Doxy - and my IGG levels stayed around 750. 10g GG-L every three weeks.
Maybe this is just my personal oddity. Otherwise that would be pretty bad if is true that Abx can lower - supress? - antibody levels/production. ?
Particularly for those of us with already supressed immune systems - then taking Abx as a challenge for testing. I assume when it is written that LD supresses the IS - they are talking about G,M and A - with other markers?
-------------------- 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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posted
Sorry - me again. Still thinking - or trying to - I just get more confused. OK - so there are total serum levels that can be checked ie IGM,IGG,IGA and IGE. There are the antibody tests that show results in IGM,IGG and IGA.
The goal of antivirals and antibiotics is to lower the viral or bacterial load. Right? ie Myco. Pn. IGG's. One takes Abx to lower the bacterial load ie kill them - and one hopes to see a decrease in the IGG count to eventually normal range. I guess those would be IGG titers?
Serum IGG and WB/titer IGG's are the same - but perhaps not the same? Sammy - your doctors say Abx do not lower serum IGG - and I hope that is the case. But Abx lowers antibody levels. ?
Perhaps what I am confusing: Total IGG sera in general vs disease specific IGG levels.
Ugh - where did my brain go? I decided to take a break from IVIG and take Abx instead. Taken together too much for me.
Thought: IVIG is more for general "targets" and Abx more specific targets? ie IVIG is not thought to target Bb/Bart etc but Abx is?
Anyway - my point - I had pretty much decided my Sept infusion was going to be my last one for awhile. To switch to Abx. I happened to ask the doctor about my 509 and having taken Zith when she told me Abx lowers antibody levels. I thought - "great" - "I cannot win".
-------------------- 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
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posted
My brain is tired but I want to try to give you a quick answer.
Antivirals and antibiotics fight infection by directly killing or inhibiting the replication of bacteria and viruses.
Antibodies help fight infection by recognizing and binding to the infectious. They also help by calling in other immune cells to destroy the infection.
I have been told that antibiotics do NOT directly lower total blood antibody levels.
When a new infection is recognized, your body should start to make large amounts of antibodies to help fight it. As the level of infection goes down, more of the antibodies are used up, your body adjusts it's response accordingly. When the infection is gone, less of these specific antibodies are needed but some will continue to be made so that they will always be available to help recognize and fight it off the infection if encountered in the future.
Does that make sense? When infection is gone, the antibody levels (for that infection) will be lower. It is not because the antibiotics did a bad thing. The antibiotics directly killed/ inhibited the infection. Antibodies are used up in the process of binding. If you are severely and acutely sick your body can use up a large amount of your antibodies quickly. This could cause a temporary lowering of your total IgG, IgM, and IgA levels.
This is one of the reasons why your doctor waited and tested your total IgG, IgA, and IgM levels over a period of a several months before diagnosing you with CVID. One set of low numbers may be in response to an acute illness. Chronically low numbers points to immune deficiency.
Many primary immune deficiency patients need to be on lifelong antibiotic therapy along with their IVIG to help prevent and treat chronic infections.
Susan, if your doctor is not being helpful, maybe you need to see a new immunologist that specializes in primary immune disorders. They could review your labs, examine you, do further testing to confirm or re-diagnose you. Then maybe your mind could rest at ease and you would know if you really do need IVIG replacement. They could help guide your treatment decisions. This is just a thought.
[ 10-27-2011, 12:13 PM: Message edited by: sammy ]
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nonna05
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Can it be explained ,simply, what is IVIG & CVIG??
I know I need info to fight this. I was reminded tonight that I have a war to fight.. That this didn't get proper treatment early on, and my own stubbornness, is what has me this far >(and of course for me the Lord)
So I need to ask these things .. As you pass this info back and forth I feel like I don't know my abc's. Nonna
I want to win , but my Joy/encouraged meter needs a boost. Thank You
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sammy
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posted
nonna, CVID stands for "Common Variable Immune Deficiency". A person with CVID has low antibodies (IgG, IgA, and IgM). Their bodies do not respond and make enough antibodies to protect them and fight off infection.
IVIG is intravenous replacement of IgG antibodies. It helps treat immune deficiencies like CVID.
If you suspect you may have an immune deficiency then you should see an immunologist for evaluation and testing. Your LLMD may be able to start you off with the basic tests like total IgG, IgM, and IgA levels.
Take care Posts: 5237 | From here | Registered: Nov 2007
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susank
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Sammy - thanks - I need to absorb your wonderful explanation. I never really have understood the workings of IVIG.
Nonna - you ask a good question. I don't think many people know about the "G.A.M.E." testing. To test for your total serum levels. Also their subclasses.
If your numbers are low/out of range then you have immune system dsyfuction - ie CVID - which is one of many. Remember the story of David? - "the boy in the bubble" - he had SCID.
Immune dsyfunction is either from birth - Primary? Humoral? or Acquired - somehow later in life. I am confused as to what I have. Acquired?
I was so unfamiliar with the GAME test - that I paid no attention to the results of my first test years ago - that my GP had the foresight to test for. She told me to go to a hematologist - which I did. Normally I would take test copies with me to new doctors. Whether or not I took those results with me - I don't remember. If any/all the doctors I was "turfed" to saw them - they did not react and advise treatment. Until four years later another hematologist checked my levels and discovered they were subnormal. That hematologist was fortunately "on the ball". She also did a bone marrow biopsy due to my elevated WBCc.
I had my first IVIG shortly thereafter at an infusion center. I was given 30g Carimmune. Only premed was Tylenol. No steroids in case of LD. No Benadryl due to my already severe dry eyes and mouth. The infusion went well. It was the day after that I started having trouble. When as usual I blew my nose with toilet paper I had a severe reaction - I felt like I had inhaled toxic chemicals - and it felt like my head was going to explode.
I wassupposed to have been given a low IGA IVIG brand - but turns out Carimmune has the highest level of IGA of any brand. Their label is misleading. Point: if you are low on IGA - particularly if your body makes no or almost no IGA - you might not tolerate or be able to do IVIG. Or you try a brand with the lowest IGA content.
I decided to try a different brand and lower dose - and did IVIG over several months. 10g GG-L every three weeks. But I still felt like I was going to "bust out" in some kind of allergic reaction. I felt it dehydrated me. Made me feel worse - my eyes more dry and more light sensitive. I just felt more hypersensitive to everything while on it. FWIW my IGA total was low end normal range - but have/had an IGA subclass subnormal.
So Sammy - that is why I am taking a break. I did not feel better on it - nor did my IGG levels rise to a "great" level. I don't know - 10g maybe not enough to raise to higher levels. But if I had trouble with 10g - was afraid to increase. The doctor and I had discussed increasing about the time I decided to take a break.
Sorry this so long. I hope this info helps someone else.
-------------------- 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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posted
FWIW here follows my values re: Abx and IGG levels.
IGG total serum: Year 2006 - 571. Year 2010 - 570 average.
IVIG 10g every three weeks starting March 2011.
March 509 - pre IVIG May 735 July 755 - after 1 wk Ceftin/2 wks Macrodantin Sept 758 - after 6 weeks low dose Doxy
-------------------- 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
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Susan, I'm sorry, I didn't mean to come across as rude or unkind in any way. I was very concerned that your doctor wasn't treating you well.
I didn't know that you had such a severe negative response to IVIG treatment.
Would your doctor consider prescribing a different brand of IVIG? Did they try IV hydration (with like 500mls normal saline before and after each dose)? Did they try slowing the infusion rate? There's got to be a way to reduce your reaction.
The normal dose of IVIG for primary immune disorders is 400-500mg/kg per month. Some people need more or less. I would guess 10g is a pretty low dose. Maybe it wasn't high enough for you to see any benefits?
I don't know though, I'm just a patient like you trying to learn as much as I can to help myself.
My IgG trough levels were low 400 before treatment. After one month of Hizentra they went up to 600. I didn't tolerate that IVIG product well so my doctor switched me to Gammagard. I just had my levels check on Monday before my infusion. I hope that they are better. I've read that it is best to keep troughs around 1,100-1,200. So we'll see. I'm looking forward to seeing improvements.
Take care Susan. I hope you and your doctor will find a treatment that will help you feel better.
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susank
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Sammy - I appreciate your kindness, helpfulness and concern. In no way did I think you meant anything other than that.
You are doing IVIG - not Sub-Q?
Why do you say you did not tolerate the "H" brand? You must have had side effects?
I did the Carimmune once. Run very slowly - took the whole day. Switched to GammaGard Liquid - also run very slowly.
I was given additional fluids - Ringers? - a couple of times. Maybe it was just a coincidence - but I felt worse the days/nights after having the added fluids. Weird. All for now - am tired.
-------------------- 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
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I tried Sub-Q Hizentra first. It was awful. Gave me fevers, felt fluey with a bad headache, muscle aches, and bone pain. These symptoms lasted 3-4days after the infusion and I was supposed to take it once weekly.
I also had injection site reactions from the Hizentra. I had to use 4 sites with each infusion. They would leave large hand sized welts on my legs. They were red, hot, and painful. The lumps took several days to be absorbed. There were still hard painful knots at all the old injection sites one month after I started. Not fun. According to my doctor, this was not a typical response.
My experience with Gammagard IV was far better. I pre-medicated with Benadryl and Advil. Infused 35g over 5hrs. Felt super tired afterwards. Next 2 days I had a horrible headache. I was happy, it was much better than my Hizentra experience.
With my second Gammagard IV the doctor added 500cc NS pre and post infusion. Felt really tired again but I think that is to be expected. Still had a headache afterwards for 2 days but it was tolerable.
My nurse said that people usually get used to the IVIG and have less side effects over time. That's reassuring. So maybe eventually I won't feel tired or have a headache afterwards.
I've also been told that you should expect to feel better in general and have more energy once you get your trough levels up and have been on IVIG for a few months. I'm looking forward to that!
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