I would encourage all to be tested for primary immunodeficiency

Discussion in 'Fibromyalgia Main Forum' started by TXFMmom, Sep 2, 2008.

  1. TXFMmom

    TXFMmom New Member

    I would encourage all individuals diagnosed with CFS and FM to be tested for primary immunodeficiency. There are over 100 different forms of it, it is genetic, and most are diagnosed by their teens, with most in early childhood. Let's face it, though, many of us did not have access to advanced medical care which even understood it.

    It was really ironic, but I was watching Mystery Diagnosis on TV one night recently, because there was nothing else on, and they had a three year old on there who became desperately ill, was treated at a pediatric hospital, sent home, and came back in much worse. They were stumped for a while and he almost died, but they finally tested him and he had the same immunodeficiency which I have. That was in a very highly thought of hospital. It was also ironic for me, since I had been diagnosed relatively shortly before the show.

    With this problem, one can suffer through, get the infections in childhood and beyond, have antibiotics pushed at you, and then have them end up giving you two, or three courses of antibiotics before it cleared, or one sees relapses. That happened to me. Then, I had a very severe automobile accident, was sexually assaulted at work and went through everything related to that, and suffered a severe fall in my shower and the bottom fell out from underneath me. My body was totally overwhelmed and what appeared to be fullblown CFS and FM was diagnosed.

    Now, twelve years after being through the mill, and I knew what to say, how to describe my problems, how to deal with the medical system, since I was an RN, Advanced Nurse Practitioner, and Certified Registered Nurse Anesthetist for 20 years, and I still couldn't find the right doctor and get the right tests until now. The testing consists of doing a Lymphocyte differential. One's total white count can be normal, as was mine. However, there are different kinds of white blood cells, and the testing must look at the subclasses. In my case, it was the B cells, of which there are four types, and all of mine were low, with three being very, very low.

    Then, they do a stimulation by injecting one with a test to stimulate infection and see if the cells rise as they should. If they do not, then they know that one cannot manufacture enough, and one has an immunodeficiency. There are other subclasses which can be tested as well. It is just a blood test, no radiation or pain involved, and it is worth its' weight in gold. If you have trouble with a doctor in getting the testing done, DEMAND THAT THEY REFER YOU TO A HEMATOLOGIST, IMMUNOLOGIST, OR EVEN AN ALLERGIST, for the testing.

    It may save your life and your standard of living. For one, you can get adequate treatment, usually with IV IG's or IV immune globulins, and NO ONE CAN DENY YOU ARE DISABLED, so those insurance companies and SSDI cannot deny any longer, as well.

    I would encourage all of you to obtain this testing. Not everyone with CFS or FM diagnosis will have it, but my physician, who is a specialist for CFS and FM, AIDs, immunodeficiencies, etc. has told me that they are finding it more and more and may begin to include it in their second set of testing.

    Additionally, most of the immunodeficiency patients have low vitamin D and B12, and I am taking treatment for both and I think it is helping.

    Once again, I encourage all to be tested and find out for your health and for some respect.
  2. ladybugmandy

    ladybugmandy Member

    i have often wondered whether i had this as well. i saw it on House once.

    i assume i was tested for it...i had a pretty extensive workup 14 yrs into my CFS.

    but it is certainly something that should be looked into.

  3. Waynesrhythm

    Waynesrhythm Member

    Hi TXfmmom,

    I left a tab opened with your post a couple days ago and then lost it when my computer rebooted. I just remembered I was going to read it and am glad I did. Some really good information!

    I'm in the process of getting tested for Lyme at the moment, but am getting focused on trying to figure out what other extensive testing I should do. This primary immunodeficiency sure seems like it should be a high priority.

    Thanks so much for posting this information. Have you discovered any effective strategies that are helping you address these deficiencies?

    Regards, Wayne
    [This Message was Edited on 09/04/2008]
  4. TXFMmom

    TXFMmom New Member

    Do not assume you have been tested for this. I had researched this thoroughly and it took me fourteen years to get around to the diagnosis, and a fist full of world-renowned physicians. Those world-renowned physicians are now receiving letters from me ripping them new ones for failing to have diagnosed me and I am currently checking into the Statute of Limitations in regards To FAILURE TO DIAGNOSE.
  5. lea

    lea Member

    Please let me know the treatment?
  6. frickly

    frickly New Member

    I beleive this is how we will recover. Not from going from doctor to doctor to only get pain releif but from personal stories of recovery. Thank you, I will ask my doctor about it.
  7. Amy_Beth

    Amy_Beth New Member

    My husband was diagnosed with and has been getting infusions for your diagnosis for about two years. Have you heard of associated liver problems resulting from the infusions? This is news to us. I'm just wondering if others have info or experience about this.

    I am new to the fibro support group. I have IBS and a history of spine problems. I just got diagnosed with R.A., as well. I'm convinced they are all related and I think you are right about the immune deficiency issues. I would love to know what you hear about probs relating to the infusions. My husband may have kidney damage. He starts on round two of testing with his sonogram this Tues. They are in the prosess of re-assessing his treatment now.

    They saved his health from chronic illness resulting in some lung damage (he doesn't smoke). He was 50's before they found it. After about a year, the infusions didn't work as well. Now the kidney problems, directly related. Sounds like you have a good doctor and are covered with treatment.