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Gamma globulin

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Rrrr, Feb 18, 2014.

  1. Ema

    Ema Senior Member

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    @lartista, you might want to join the CVID FB group as well if you haven't already...It is a lot more active than the IVIG group.
  2. lartista

    lartista Senior Member

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    THANKS...
  3. aquariusgirl

    aquariusgirl Senior Member

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    ema, curious to know which doc had you on kutapressin every day? Enlander?
  4. Ema

    Ema Senior Member

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    I was actually on Nexavir through my LLMD.
  5. aquariusgirl

    aquariusgirl Senior Member

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  6. Ema

    Ema Senior Member

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    I rotated and pulsed but an average of 2mL a day.
  7. minkeygirl

    minkeygirl Senior Member

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    I just got my labs back from the Immunlogist (who is actually an Allergist) who said even though my immunoglobulins were low, that didn't matter if my immune system was working. Huh? The doctor told me she wanted me to get the pneumonia and HIB vaccine but not for CVID but because out of 14 serotypes I only had 4 that were in the normal range. I think she ruled it out because I haven't had a bunch of infections. Sinusitis maybe. Maybe it's atypical?

    @Ema looked at my labs and said I fit the criteria for CVID. I requested a 2nd opinion, however there is no one in my plan who specializes in immunology. My PCP has asked for a referral to Gupta at UCI but they denied that once before so I'm not holding out much hope.

    Since they most likely will deny me, and the only other "immunologists" are in the same office as the first I think I'm sort of back to square one.

    I think I'm going to get the the vaccine and the followup labs, (which the immunologist wanted) then I'll have some proof one way or the other.

    I found some labs from 2012 this morning and I have tested positive for Mycoplasma pneumonia and Chlamydia. (not sure if that is significant)

    It shouldn't be so hard to get a diagnosis.

    Do I need labs before I get the vaccine or just after to see if I make antibodies?
    Last edited: Mar 22, 2014
  8. Ema

    Ema Senior Member

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    @minkeygirl, your low IgA and IgG put you on the right track for a CVID diagnosis but you will have to have the vaccine challenge as well before it can be diagnosed.

    I put the vaccine challenge protocol in the PM.

    Here it is again:

    "How to collect the serum for anti-polysaccharide IgG antibodies?

    Collect the serum prior to immunization with Pneumovax 23. Store the pre-immunization serum in the office refrigerator. Give the vaccine. Check the post-immunization serum 3 weeks later. Send both pre- and post-immunization serums to the laboratory at the same time.

    The pneumococcal vaccine comprises purified capsular polysaccharide of 23 stereotypes that account for more than 90% of the invasive pneumococcal infections in the USA. It induces anti-polysaccharide IgG antibody levels to most or all of the component polysaccharide antigens in immunocompetent adults. Elderly adults respond equally well to vaccination as do younger adults. The current 23-valent vaccine comprises 25 μg of each of 23 pneumococcal stereotypes (namely, serotypes 1, 2, 3, 4, 5, 6B, 7F, 8, 9N, 9V, 10A, 11A, 12F, 14, 15B, 17F, 18C, 19A, 19F, 20, 22F, 23F and 33F).

    The test should be ordered as follows: Pre- and post-IgM and IgG antibody titers to pneumococcal serotypes 1, 2, 3, 4, 5, 6B, 7F, 8, 9N, 9V, 10A, 11A, 12F, 14, 15B, 17F, 18C, 19A, 19F, 20, 22F, 23F and 33F"

    I would call your insurance and ask for a clinical immunologist, not an allergist/immunologist.
  9. minkeygirl

    minkeygirl Senior Member

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    I got protocol thanks @Ema. It's hard for me to read it which is why I asked some questions here. (too many long words).

    I talked to my PCP who is on the board of my insurance group. There is no clinical immunologist. Only allergists. I told her that would not work which is why she is going to try to get me to see the other guy. They will deny it, again.

    I'll see how that goes but in the mean time I'll contact the immunologist I saw so she can order the lab work for me to get done when I have the vaccination. My doc can do blood draw in her office so I won't have to go all over the place. I don't have an appt until April 28th. (I just am not up to making another trip there right now.)

    I'm hoping that if this does show CVID the immunologist will confirm the diagnosis and then I can get treatment. I'm not optimistic because she said even though those levels were below the range, if my immune system was ok it didn't matter. Maybe she didn't mention CVID to me because she thought I would be scared. She also thought i was too dumb to understand lab results over the phone vs. sitting in her office going over them in person.

    I'll deal with that when the time comes.

    Does this vaccination cause less issues than say the Flu vaccine? I know it's necessary to dx this.
  10. boohealth

    boohealth

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    You might also consider what it's in. I like gamunex. Its physiolgoically most approriate (glycine) and filtered down to the prion level.
  11. Ninjas

    Ninjas

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    Reading with great interest.. and I don't want to hijack but I have one question/clarification about testing. If a lab result came back showing a normal level of gammaglobulin (via protein electrophoresis – no breakdown into IGA, IGG, etc.), can one assume that the Ig's would be within the normal range as well?
  12. minkeygirl

    minkeygirl Senior Member

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    I just dug out some labs from 2012 and I have a bunch of infections going on, mycoplasma pneumonia and mycoplasma chlamydia. Also positive for sjogrens and varicella zoster. I'm also positive for EBV, HV6 and CMV

    Should I get on ABX while I wait to find out if I have CVID? I read something about treating things before but I can't remember what it said.

    Thanks
  13. Ema

    Ema Senior Member

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    Yes. I would get new labs and get on antibiotics and antivirals as necessary. Anything you can do to kill infections will make the transition to IgG replacement easier. People who start with lots of active infections often have a harder time getting acclimated.
    heapsreal likes this.
  14. Ema

    Ema Senior Member

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    I haven't heard of people having issues with this vaccine overall and it is routinely given to an immunocompromised population.
  15. minkeygirl

    minkeygirl Senior Member

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    @Ema Thanks. I'm going to talk to my NP monday and get on ABX. See what else she suggests.

    I'm on 1600 mgs Acyclovir. I cannot take Valtrex or Famvir. Also on .5 mgs LDN and just started Oxymatrine today at a low dose.

    I've contacted the immunologist and my PCP about doing the vaccine at the end of April when I already have an appointment. I can have 2 months of ABX under my belt before I get a diagnosis.

    Whew. A lot to going on.

    Good night!
  16. Ema

    Ema Senior Member

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    I don't think you can assume that.

    IgG is one subset of gamma globulins but there are others as well.

    I think you would have to have the specific testing to know for sure.
    Ninjas likes this.
  17. minkeygirl

    minkeygirl Senior Member

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    I just spoke to my immunologist. She said that my IgA is not low enough to qualify for deficiency but she did say that I may have Specific Antibody Deficiency. She did say it could evolve into Variable .

    She has talked to my PCP to do the testing which I think will be done the end of April.

    She said IgG is protective and suggests a past infection.

    I'm working on her to open her mind that she can't base things with me as if I were the general population. I am trying to get her to see all the infections I have.

    Anyway, I have 3 doctors working on this, her, my PCP and my NP.
    heapsreal likes this.
  18. Rrrr

    Rrrr Senior Member

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    @minkeygirl -- personally, i would keep FAR AWAY from doing the vaccines. i think it was a vaccine that triggered this in me the first time i got sick with me/cfs.
  19. Rrrr

    Rrrr Senior Member

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    I JUST asked my doctor if I can switch to this Gamunex-C brand you are writing about. I have been on GammaGARD and at first I did poorly, then well (for a few short days) and now poorly again. I'm really sick this past week. So I'm going to switch off of GammaGARD and try Gamunex-C. I, too, heard it is better filtered (or whatever the word is) than the other brands. not sure if that is true or not, but that is what I heard.

    First, I did a brand used IN my doctor's office, called GammaSTAN, with mixed results (some good, actually!), and I could do that again this week. But ideally I'd like to try to find a *home-delivered* brand I can tolerate. I've now done some of the home-delivered GammaGARD brand, and I am not doing well on it, as mentioned above. I know that different patients react better to different brands. So if i want to switch brands, I can now switch to either:

    - Hizentra
    - Gamunex-C

    Accreedo Pharmacy carries both. Ideally, I'd like to try Gamunex-C, which can be used via IV or subq. Gamunex-C replaced their old Gamunex which was only approved for IV. Their purification process sounds really good, as they filter down to the prion level (https://www.gamunex-c.com/html/hcp-about-gamunex-c-manufacturing-process.htm)
  20. minkeygirl

    minkeygirl Senior Member

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    Mine absolutely started from a virus. I've had flu vaccines and had no problem, although I no longer get them.

    And are my symptoms ME or from an immune disorder. Was my immune system messed up that it couldn't handle a virus? I need to know.

    I've been trying to get to an immunologist for years. For me to get the treatment I need, which is gamma globulin, I have to get this test. I'm willing to risk it to find out what is up.

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