Diagnosed with Primary Immune Deficiency

Discussion in 'Fibromyalgia Main Forum' started by TXFMmom, Aug 6, 2008.

  1. TXFMmom

    TXFMmom New Member

    I was diagnosed with FM in 1994, and had a severe spinal injury which helped in my becoming disabled. I fought infections all the time, of the sinuses, skin, feet, and scalp. Nothing seemed to be able to totally clear them and I became more and more fatigued and the sleep disorder worsened and I gained weight.

    About a year and a half ago, it was discovered that my adrenals were suppressed and they thought it had suppressed my B lymphocytes and subset white cells, and I was treated with four IV Immune globulins. I improved slightly, and we thought that the problem was from the series of spinal injections which I had in the time leading up to that.

    However, I continued to deteriorate and had skin infections, fungal infections, yeast out the ying yang and bronchitis. Dr. Salvato once again did the B lymphocytes and they were all low, and no steroids were involved. She then did the stimulation test and my B lymphocytes did not move. We learned that I have primary immune deficiency, a genetic problem usually diagnosed in childhood or adolesence. I am 57 years old and had been an RN, an Advanced Nurse Practitioner and a Certified Registered Nurse Anesthetist with seventy hour weeks, stress, and one of the most demanding careers around, and was exposed to every disease known to man and yet I slogged my way through it for all those years until a serious injury and a sexual assault just made me deteriorate, become fatigued, disturbed my sleep, made me stiff, I suddenly couldn't tolerate the cold after working in 58 degree temperatures for years.

    I KNEW WHAT TO TELL THE DOCS AND HOW TO EXPLAIN THINGS and I had told them over and over that there had to be something in the labs that was being missed. Well, Dr. Salvato listened and did the tests and diagnosed me. I had seen world-renounced specialists in all kinds of fields and THEY ALL JUST FELL ON THEIR FACES.

    With the findings of the CDC about the genetic defects of CFS and Fibromyalgia patients I would urge all of you to have this checked. I know the FFC did not check them, when I saw them, and I know that none of the others did, either. They would look at the white count and say it was normal, and leave it at that. Without the subclasses, that MEANS NOTHING.

    I used to argue with surgeons about doing elective surgery on patients who had been on aspirin and or non-steroidal anti-inflammatories because they would take a platelet count and say, Look, it's normal. The only problem is that about three quarters of those platelets were not ready for duty, walking on two crutches, so to speak, and I would usually be proven correct and we would get into blood losses abnormal for the surgeries and end up having to give far more blood, fresh frozen plasma, and platelets to those patients, and the smug butt surgeons took years to finally admit that.


    I urge all of you to get a subclass, and if they are low, get the stimulation test and see if you can respond. WHEN YOU TELL A DOCTOR OR AN INSURANCE COMPANY THAT YOU HAVE PRIMARY IMMUNE DEFICIENCY, THEY WON'T GIVE YOU THE RUN AROUND. The tests are not that expensive and they are a blood test.

    BC & BS okayed TWELVE TREATMENTS FOR ME, at two week intervals, at $10,000 a whack, and you know that you are SICK WHEN THEY DO THAT.

    I do have CFS and fibromyalgia, but it is or was caused by the primary immune deficiency and I wonder how many of us have it. Believe me, NO DOCTOR WOULD EVER SAY AGAIN THAT FIBROMYALGIA OR CFS DOESN'T EXIST IF WE START SHOWING UP WITH THIS PIDEFICIENCY DIAGNOSIS, THE DUNDER HEADS.
  2. simonedb

    simonedb Member

    thanks for that txfmmom. I hear ya on the smugbutts haha.
    so what exact test should I ask for? i know an open minded doc I could ask. I don't have the medical background. I am confused though on what my situation is, seems I had the possible primary immune illnesses perhaps years ago, rarely get fluish stuff anymore, the opposite, rarely get sick like that anymore compared even to normies, but I do have big oxygen and energy problem every day, would your tests pick up anything with my immune system or if the initial onslaught is gone could my tests be back to normal?

    Have you read Oslers Web? the book about the hx of cfs in US and how cdc sabotaged info etc, I am not done with it yet but I would love to hear your interpretation of the med info in there wiht your experience and knowledge.
  3. wrthster

    wrthster New Member

    I was diagnosed in 2005 with IGG specific or common variable immune deficiency. Levels 1 & 4 were low. Then Quest changed the reference range and I am right on the border.

    Blue Cross paid for the IVIG but I just could not tollerate it. I found to be horrible and that was after three infusions.

    I am curious as to what the other part of your post you are talking about? I have no idea if you could elaborate it would be greatly appreciated. The IVIG did nothing for me either and I still get infections all the time. Thanks.
  4. TXFMmom

    TXFMmom New Member

    Testing for Primary immune deficiency is done through lab work. Normally, the docs will just do a general white count test, say the count is normal, and stop.

    However, there are different types of white cells, and in primary it refers to the B lymphocyte white cells. There are four subsets. The first step is to check the subset and is done with a blood lab test. If there are any which are low, and I have three of the four, then, they give two injections which mimic being exposed to tetanus, strep, etc. and wait thirty days exactly. The blood work in tested to see if the values change. If one is normal, then the counts should increase into the normal range, if they do not increase, such as mine, then that means that the individual is not capable of responding to certain kinds of infections correctly.

    The treatment is normally IV IG's, and see if that brings them to normal and if they remain so for a while. Their take on me is that I shall require periodic infusions for the rest of my life.

    Deficiency in this caused FATIGUE, malaise, infections, pain, and generally feeling crappy. It is GENETIC. Most are diagnosed in childhood or in teens. I was 57!!!!! and the Nurse Practitioner said that that means that I am one tough broad, and that is a compliment.

    If one gets this diagnosis, then SUDDENLY ONE GETS RESPECT OUT THE YAHOO. You have the same symptoms, pains, stiffness, infections, fatigue that you had before and docs would tell you your sickness DIDN'T EXIST.


    Additionally, Dr. Salvato and I discussed this, and we agreed that many of the CFS and fibro patients may be suffering from this.

    At any rate, it is worth the lab costs to uncover it, and if enough of us start doing it and getting the diagnosis, then suddenly, they may understand the reason for FM and CFS and IT WILL NO LONGER BE A SYNDROME AND THESE DUNDERBUTT DOCTORS WILL KNOW THEY NEED TO TREAT IT AND THE SYMPTOMS AND RESPECT IT.
  5. aleutian

    aleutian New Member

    I have IGG deficiency 3 &4 an dnow low IGM levels(below normal range). I;m getting sicker and sicker. I have contacted the immune deficiency foundation to see if they can steer me to the right doctor. I know I'm not supposed to post my e-mail, but the reply on the new message board does not give it so I'm posting mine.

    If you could contact me and let me know who I might see (yes I;ve been given diagnosis of CFIDS) I would greatly appreciate it. In Pittsburgh a young child wwit severe immuedeficiency syndrome was given a cord stem cell transplant successfully.

    Thanks, Mary
  6. jabuaisha

    jabuaisha New Member

    Do you mind posting the results of your IGG subclass blood test results? I am pursuing this for one of my children, whose results came in low, according to his doc but not low enough to qualify for treatment. Problem is, I can't find anything anywhere on the web that really specifies how low they are supposed to be. I'm curious as to what your numbers looked like....
  7. TXFMmom

    TXFMmom New Member

    My number one was one third lower than the lowest norm, the second, third, and fourth ones were two thirds below the lower norm. I don't remember the exact numbers. I just know that after the stimulation test, they didn't budge.

    I am taking the IVIG's, and they may be helping with infections. However, we also found that my B12 and my Vitamin D were extremely low, and they do tend to follow with this, and taking the B12 shots and Vitamin D's weekly really help after about the second week of them.
  8. aleutian

    aleutian New Member

    My Igg 3 was one point below lowest end of normal. My IGG 4 was only 0.2. Lowest range is 4. My IGM is 10 points below lowest range. It has dropped ten points in the last year. I think these low levels are seen in auto-immune illnesses. I have seen people with lupus,for instance, state that they have low IGA levels. You can to to the immune deficiency foundation website and read information about all the various, assundry illnesses that are related to immune deficiency syndromes.

    I cannot fight off infections, and viruses. I was told by Dr. Levine that I have a mild immunodeficiency to S. pneumoniae, and she recommended a vaccine to boost the immune system. I am awaiting a return call from the immune deficiency foundation whom I consulted regarding possible treatments for the deficiencies. They are also sending me a packet of information. I've done some research on the internet about combined immune deficiency syndrome. It is a complex subject and one in which the research is in its infancy.

    I am also following up with the UPMC's center for blood cord stem cell transplants.

    I would be curious to know if anyone has benefitted from IVIG treatments. It looks doubtful.

    If I can answer any other questions, please feel free to ask me.
  9. joanierav

    joanierav Member

    any vitamins, minerals, or herbs that have helped you, besides the ivig infusions? thanks for your replys. joanierav
  10. quanked

    quanked Member

    tomorrow. Would you please tell me exactly what test to request? All the medical terminology and letters for words goes over my head. If nothing else, I could get this disorder ruled out.
  11. joanierav

    joanierav Member

    sorry the above post is for txfmmom, wrthster, aleutian. brain fog left the names out. ggrrrr joanierav
  12. joanierav

    joanierav Member

    you can request igg subclasses 1-4. also igg serum, iga serum and igm serum. all blood tests you dont have to fast for them. good luck, joanierav
  13. hensue

    hensue New Member

    Exactly what test is out there to find out if we have this? If we do what can be done?
    what is a subclass? what is a stimulation test? sorry i am truly blonde
    just diagnosed with lupus now thank god ruled it out and RA
    Thanks on info. What is BC and Bs twelve treatments?
    Thanks for all the info
    Please let me know
  14. 2sic2mooov

    2sic2mooov New Member

    Just looking at posts and see you first put this one out in Aug. Just wondering how your Tx is going. You really inspire me and I am sure others to get some guff and push these jokes to look at the whole story. You are fortunate that you have such a great medical background and probably know more about what to push for.
    Many of us have just sat complacent and nod our heads thinking the docs should know what to do b/c they are so highly educated? Funny thing is they admit they cant help us or cure us or figure out how the heck we got so sick and YET we still put ALL our trust in them that they will know what to do, what to test for, etc. I have been dx for 8 years and probably suffered since late teens or early 20's...always waved away as something simple or something "in our heads". This bout came on like a train 8 years ago after a flu, not something that was quickly or simply put in my head. I have to say for a body to always feel sick and easily GET sick, you have to believe it all begins in a faulty immune system. I will arm myself with your knowledge and experience and try to get my doc to take a look. Thanks for your info and help. (And the laughs about the SmugButts! I worked with docs in Ophthalmology arena for a few years and they are SB's too...I mean SMUGBUTTS! Hee hee!)