I was diagnosed with Primary Immunodeficiency

Discussion in 'Fibromyalgia Main Forum' started by TXFMmom, Aug 20, 2008.

  1. TXFMmom

    TXFMmom New Member

    I've been told for years that I had FM, and despite infections out the yahoo, and other things, I got all the platitudes about FM and it being in your head, etc.

    Dr. Salvato had helped me a lot, and told me that she felt that I had CFS, with FM. Two years ago, we found that I was adrenally suppressed and my B lymphocytes were low, but we felt it was from having had steroid injections in my spine. I received some IV IG's and was better for a while. Then, the severe fatigue and the infectons started.

    She did the testing for subclass B lymphocytes and three of the four were really low and the other a little less low. I had the stimulation test and nothing moved!!!!

    We now know I have primary immunodeficiency, usually found in childhood or in the teens, and a SERIOUS, SERIOUS PROBLEM.

    I would encourage all people diagnosed with FM and CFS to be tested for this. It is genetic, but comes in varying degrees and it is SERIOUS folks. I confronted one of my docs, who had given me a hard time about FM and CFS, and he was SPEECHLESS. I pointed out to him that he HAD FAILED TO DIAGNOSE ME AND HAD IGNORED MY VERY CLEAR, SUCCINCT DEPICTION OF MY PROBLEMS. I told him he needed to start listening to his patients, stop being a bully, and stop being so pig-headed, and that he needed to do this testing.

    It is a blood test, no risk involved, and once you get a diagnosis like this, YOU CAN GET HELP, AND THEY ARE FALLING ALL OVER THEMSELVES TO RECOGNIZE HOW SICK YOU ARE.

  2. sleepyinlalaland

    sleepyinlalaland New Member

    to have found out your real problem, but also very sorry that you have a serious malady. Surely there is some satisfaction in confronting the disbelieving arrogant doctors of your past! Whether one has a corfirmable diagnosis or something yet misunderstood (CFS), I think it is criminal to be blown off by a doctor.

    Did you see Medical Mysteries last night on NBC? Primary Immuno-deficiency was the diagnosis eventually given to the little boy profiled. Serious indeed, but it sounds like it can at least be managed. I hope you experience much help and relief.
  3. jasminetee

    jasminetee Member

    First of all, you rock! I like how you stand up for yourself. :) How did your doctor respond?

    Secondly, sorry about your Dx and thank you for this information. I've had tons of blood testing done, but if the one you're talking about isn't routine then I may not have had it either.

    So what you're saying is we should get a test done for subclass B lymphocytes and there should be 4 kinds of lymphocytes that show up and we should get a stimulation test?

    Is that correct?

    What kind of treatment do they have for it?

  4. mbofov

    mbofov Active Member

    Thank you for posting. Wow - I'm glad you got the testing you needed, very impressed with how you confronted your doctor (did he respond in any way appropriately? e.g., an apology?) And sorry at the same time that you have this diagnosis, but glad that there is help.

    You've woken me up and I'm going to ask my doctor about getting tested. I get repeated infections every time I crash, so I'm sick a majority of the time.

    What help is there for primary immunodeficiency, by the way?

  5. hensue

    hensue New Member

    What test can you find out if your adrenals are suppressed?
    I am glad you found out. Now what do you do for it?
  6. jasminetee

    jasminetee Member

  7. TXFMmom

    TXFMmom New Member

    We have different kinds of white cells. My total white cells were always normal. They never checked for subsets.

    The B lymphocytes are made in the bone marrow. One can have a genetic predisposition not to make them in sufficient numbers.

    To test for it, they just do a lab blood test for B lymphocytes, of which there are FOUR types. One of mine wa low, number one, but not dreadfully low as the others were.

    Then, they administer two injections which mimic or should stimulate exposure to things which should greatly increase the B lymphocytes. If one does not respond, then they know that one has primary immunodeficiency and they can treat.

    The symptoms of this closely resemble CFS and FM, folks.

    It is simple, not very expensive and can answer a lot of questions.
  8. TXFMmom

    TXFMmom New Member

    Any doctor can order the original B lymphocyte subclass test.

    The stimulation test most often is ordered by allergists, immunologists, rheumatologists, etc.
  9. jasminetee

    jasminetee Member

    It's nice to know it can be done easily with just a blood test.

  10. TXFMmom

    TXFMmom New Member

    Dr. Salvato does some tests routinely, but will pattern her testing based upon your symptoms, her exam, and a very good history.

    If you have severe fatigue, a history of infections such as thrush, which should not be seen in adults unless they have impaired immune responses, or have had great difficulty in treating infections, along with the usual things, then you may be a candidate for the testing. The first test for Blymphocytes would be something which she would be willing to test for, I should think, with her initial assessment.

    I suggest that you look up primary immunodeficiency on the Mayo Clinic site and see if it seems to fit you.

    Considering all the tests, meds, and other things most of us have to endure, the test, since it is a blood test, and the cost, which is not all that expensive, is not something which would be a burden.
  11. mbofov

    mbofov Active Member

    Thanks for all the information.

    I have one more question: Do you know HOW they treat primary immunodeficiency?

  12. TXFMmom

    TXFMmom New Member

    I am receiving IV Immune Globulins. I am scheduled to receive 40Grams every two weeks, with twelve scheduled.

    We hope then, to start stretching them out to every three weeks to a month, and so on. I will probably have to have them periodically for the rest of my life.

    One must take care of oneself, by getting plenty of rest, avoiding infection, if possible, and jumping on any infections right away. IV anti biotics may be necessary, when ordinarily oral ones would be used.

    I am going to declutter my house, have the AC/Heat vents cleaned, remove carpet, and sanitize and green up the place as much as possible. I must have flu vaccines and stay away from sick people during flu season, yeah right.

    Most of all, one must realize not to push oneself when the fatigue is there, and do not hesitate to seek care early.
  13. mbofov

    mbofov Active Member

    for all the information. That's quite a regimen. Let us know how it goes.


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