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Primary immune deficiency.......anyone?

Discussion in 'General ME/CFS News' started by IntuneJune, Apr 22, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    same, ebv/cmv mono with sinusitis etc, doesnt seem alot of treatment out there from PID other then treating infections directly and immunoglobulins. Might be why they cant find 'ONE' cause of cfs/me.

    cheers!!!
  2. IreneF

    IreneF Senior Member

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    CVID usually involves an antibody (immunoglobulin) deficiency. I wonder if my doc used it as a diagnosis because being diagnosed w/ CFS is the kiss of death, treatment-wise, and CVID comes the closest to describing my condition.

    Dr. Kogelnik is the only physician in the US treating the-condition-formerly-known-as-CFS with Rituxan, altho it is approved (I think) for certain autoimmune disorders.

    I had my first infusion at the end of March, one more at the beginning of April, and I am scheduled for a third around Memorial Day. I feel about the same as I did before--not good, but certainly no worse than before. I got a fairly mild reaction to the first treatment with fever, pain, and more fatigue than usual. I am not expecting to see any improvement for several months.

    Because Rituxan wipes out the antibody-producing cells it's probably not a good idea for people who are already deficient in that respect. It might possibly be beneficial if you have symptoms caused by excess cytokine signaling from B cells but I don't know if anyone has explored that aspect among patients with classic primary immune deficiencies.

    Yes, the immune system is one of the most complex aspects of biology. Tough to follow when one's got brain fog.
  3. IreneF

    IreneF Senior Member

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    Most PIDs are probably genetic, so there isn't any any way to treat them other than with antibiotics and Igs.
  4. taniaaust1

    taniaaust1 Senior Member

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    Still would be great to know about if one has this issue.
  5. DaiWelsh

    DaiWelsh

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    I asked my GP (UK) about CVIDS recently and I am getting the IGg blood test done next week, however when I suggested to my GP that this might get me out of the wilderness of no-treatment CFS he said in his experience people with CVIDS went to the immunologist who said "interesting diagnosis, nothing we can do about it". Anecdotal but not encouraging, is this just UK again?
  6. IntuneJune

    IntuneJune Senior Member

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    Rituxan

    IreneF

    Yes, you are quite right,CFS as a diagnosis is the kiss of death resulting in treatments that are not of much help.
    There are so many primary immune deficiencies and over the years, I have gone from a subclass deficienty to common variable. The treatment however was the same.

    There are some patients who do have CVID and elect not to treat with infusions. The patient's histories seem similar however, they have not had repeated very serious infections...so they are gambling and hoping they don't get struck down. I did not get diagnosed until age 60, and my past history reads very similar to those who got diagnosed at a late age, frequent severe infections, pneumonias, bronchitis, sinus infections with resultant pathology of the lungs and sinuses because of it and other autoimmune problems.

    If you did have a dx of CVID, treatment with immunoglobulin should have been offered you. So maybe you are correct, it was the "closest" and got you a trial of Rituxan.

    I hope it helps you. June

    QUOTE=IreneF;256890]CVID usually involves an antibody (immunoglobulin) deficiency. I wonder if my doc used it as a diagnosis because being diagnosed w/ CFS is the kiss of death, treatment-wise, and CVID comes the closest to describing my condition.

    Dr. Kogelnik is the only physician in the US treating the-condition-formerly-known-as-CFS with Rituxan, altho it is approved (I think) for certain autoimmune disorders.

    I had my first infusion at the end of March, one more at the beginning of April, and I am scheduled for a third around Memorial Day. I feel about the same as I did before--not good, but certainly no worse than before. I got a fairly mild reaction to the first treatment with fever, pain, and more fatigue than usual. I am not expecting to see any improvement for several months.

    Because Rituxan wipes out the antibody-producing cells it's probably not a good idea for people who are already deficient in that respect. It might possibly be beneficial if you have symptoms caused by excess cytokine signaling from B cells but I don't know if anyone has explored that aspect among patients with classic primary immune deficiencies.

    Yes, the immune system is one of the most complex aspects of biology. Tough to follow when one's got brain fog.[/QUOTE]
  7. IntuneJune

    IntuneJune Senior Member

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    DaiWelsh
    Here in the US, when a patient receives a dx of CVID, they are treated with immunoglobuins......this prevents or drastically reduces serious infections. I do know of one person who refused treatment concerned about receiving a plasma product.

    The subclasses should be included in your testing.
  8. IntuneJune

    IntuneJune Senior Member

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    IreneF

    One of the most respected pediatric immunologist's, Dr Bonilla, spoke at an IDF meeting and was asked this question. Are immune deficiencies inherited? He replied there was no data to support this. I was sitting at a table with a Mom whose children had an ID, she has, and her father! Humph!!!! There was his data.

    June
  9. IntuneJune

    IntuneJune Senior Member

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    Wally,

    Thank you for the links. I have followed folks here (some time ago) who have had office visits with these physicians, but cannot remember their outcomes

    I will visit their sites.

    It might be that because of an immune deficiency, a virus was able to get a good hold and settled deep into our bodies...most folks get a virus and get better, then some of us don't. It would make sense that the ones who don't have an immune deficiency.

    June
  10. IntuneJune

    IntuneJune Senior Member

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    Ohhhhhh!!!!! I wonder if the viral proflie differs from the autoimmune?
  11. IreneF

    IreneF Senior Member

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    He may have been correct, if no one had published a case report. Saying "no data" is just another way of saying "we don't know". It's not the same as IDs are never inherited.

    This looks like someone's class notes, but if you don't follow medicalese you will find it less than an enjoyable read:
    http://www.opt.uab.edu/class2011/2nd year/micro/transcripts/Immunodeficiency Transcript.doc

    Irene
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    my immunoglobulin sub classes have always been high, mainly IgA.
    In japan i have seen it written that they call cfs, low natural killer cell syndrome, i think this name describes many cfsers immune dysfunction better
  13. Stellar0

    Stellar0

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    Hi June. I started out with an EBV that was active for 3 years. I was dx with fibro in the middle of that infection. Almost like clock work at the end of the 3rd year of the ebv I contracted West Nile Menegitis that lasted exactly 1 year and last but not least I moved into a house that aspergillus penicillium in it. You got it.... it attacked me with a vengence. I had mycotoxicosis. Now after all this my doc decides she needs to check for CVID and voila! I was put on Hizentra SCIG in May 2011. My most recent sick badge is for my new dx of Hoshimoto's. Please free to message me if you like some support and to trade notes.
  14. IntuneJune

    IntuneJune Senior Member

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    CVID and throid issues

    Stellar, this is very common; many, many primary immune folks develop thyroid issues and other autoimmune problems.

    This past weekend, I went to a regional conference for PIDD and thryoid diseases were discussed. Sigh, we get it "coming and going."

    Does your immuno believe you could not fight the other issues because of a dysfunctional immune system, or did the other ongoing issues wear your immune system out?

    June
  15. Ocean

    Ocean Senior Member

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    So having low levels of one of the IGg subclasses wouldn't qualify one for a diagnosis, right?

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