Discussions By Condition: Immune conditions

Am I getting the correct treatment?

Posted In: Immune conditions 6 Replies
  • Posted By: Anonymous
  • August 17, 2006
  • 05:00 PM

I was first diagnosed with low IgA, IgG, and IgM immunoglobins when I was hospitalized with pneumonia when I was 27 years old. Over the next three years I was referred to three different immunologists who all expressed concern about my continuing low levels and my frequent sinus and other infections, yet they all just recomended frequent antibiotics. I was never given an actual diagnosis. I finally stopped seeing the immunologists because one by one there was nothing they could really do for me.
Two years ago (at age 45) I developed Psitticosis from my new (now dead) pet parakeet. My family practice doctor was so used to my frequent respiratory infections that he didn't seem alarmed at first by my symptoms and the Psitticosis lingered for months. I was finally hospitalized when it invaded my nervous system. Fortunatly I recovered.
I am now seeing one of the immunologists again and my IgG and IgA levels are still very low. (My IgM has now improved to low normal.) My IgG subclasses 2 and 3 are almost absent. My IgA subclass 2 is zero. I have had sinus surgery, more sinus infections, frequent bronchitis, swollen hands etc... It seems that I am on antibiotics 2 to 3 times per month or more.
I must continue working (I'm an R.N.) or I will loose my health insurance. I have never smoked. I do not drink alcohol. I am usually a cheerful optomist, yet I am now feeling depressed, frustrated and exhausted. I still don't even have a diagnosis. My own research has brought me to the CVID diagnosis. My immunologist is a really nice man but when I mentioned CVID to him he didn't respond directly. He just said I should start allergy shots and take lots of antibiotics. Shouldn't I be getting Gamma Globulin?
My father was a clinical professer of eye plastic surgery at UCSF Medical Center, yet he died years ago. None of his old friends know anything about immunology. Does anyone have any advice for me? Any similar experiences? I am now 47 years old and my youngest child is only 5. I would really like to be healthy enough to raise her.

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6 Replies:

  • Hi Cheryl,Not being a doctor, but one who suffers from CVID what you describe are definate symptoms of CVID. I am guessing there may be variables and for this reason CVID has not yet been diagnosed.Sometimes, we need to be firm and perhaps a little demanding, with our Doctors and I am guessing being a nurse you will know this for yourself.CVID can also mimick a lot of other diseases and disorders, therefore making diagnosis difficult. Your past medical histotry will help your physician make a solid diagnosis.Do not give up, pester your doctor. Make sure you let him know all your symptoms not matter how small they may be. You need an answer one way or another. The good news is, if it is CVID, then I guessing you will start IVIG treatment and before you know it, you will be a new person...and infection free.All the best.Susie.
    Anonymous 42,789 Replies
    • August 19, 2006
    • 01:12 PM
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  • Cheryl, Although I do not usually participate in forums, I had to join and reply to you. I have been ill, and getting worse over 15 or more years, while working as a nurse and raising my daughter. I have seen many, many specialists, and been misdiagnosed so many times, although I can now understand how difficult it can be to make the correct diagnosis. My fahter was also a physician for 50 years, and so many times I prayed he was here, as I know he at least would have gotten me to the right person, or encouraged them to truly pay attention. I am not blaming, but only want to encourage you to find a doctor who will try the IV immunoglobulin; I think it's worth a try. My experience, similar to yours, was lots of antibiotics, etc., until I finally found an infectious disease physician who said I should try the IV treatment! I have not, because of circumstances...I had to move...but am hoping to find someone else. I am now 54, on disability, had to stop working 5 years ago. It's okay, now, but don't second-guess yourself too much, and go for the help you need. You're worth it, and so is your daughter. I'll be rooting for you... Karin
    Anonymous 42,789 Replies
    • August 20, 2006
    • 05:31 PM
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  • Susie and Karin, Thank you so much for sharing your experiences with me. It truly helps to know that I'm not alone! I am starting IVIG treatment in two days. I'm shocked at how fast everyone (MD's, HMO authorizers, the treatment center etc...) finally responded. I'm SO GRATEFUL, yet I'm still feeling so ill, feverish and exhausted at the moment it's hard to get too excited. Susie, it is wonderful to know that you are doing well now. It gives me hope for some type of normal life. Karin, I hope that you are able to start treatment soon. I have not been able to work much recently and permanent disability would have meant a loss of my health insurance. I hope this was not the case with you. I hope that you don't mind but I am praying for you and your child that God will protect you and provide for you. Thank you again, Cheryl
    Anonymous 42,789 Replies
    • September 7, 2006
    • 05:00 AM
    • 0
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  • hi cheryl I am no doctor but what you described is EXACTLY what happened to me. I am 15 and have suffered from CVID for 3 years. i have always had chronic sinus and respitory issues but in 7th grade it got very severe, i was always sick,tire,exsausted,and depressed. after a year of going from doctor to doctor i was diagnosed with CVID. i would recommend finding either a new doctor or insisting on getting a blood test to specifically test for CVID. I wish you the best of luck.ashley
    Anonymous 42,789 Replies
    • November 20, 2006
    • 08:50 PM
    • 0
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  • Hi. I have a little knowledge about the immune globbs that the medical field talks about very seldom. The people who receive these additives are the very profound needers of this treatment. From what I understand, very few get them and you must be REALLY in need. They say there are not enough to go around to just give to the "severe" people. You must be pretty "critical or profound" in order to get those beauties. Seeing you are a RN, have you ever thought of Mitochondrial Disease? UMDF.org might give you some information if you have not heard of it already. God bless, MakAsh.
    MakAsh 2 Replies
    • November 30, 2006
    • 06:51 AM
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  • HiThis is the first time I have been on this website. I have just been told I have CVID. I will be starting the infusions in a couple of weeks. I have been to 5 doctors before being properly diagnosed. I had chronic sinus infections and other infections one right after another, fatigued, and sore joints. Doctors gave me anti-depressants, until one day I talked to a doctor,also a friend and told him my story. He said, come see me, I think you need to have your immune system checked. Well, after 2 years and 5 doctors I have finally been diagnosed. I am praying this is the answer to my problems. I feel for all of you that have felt badly and had a difficult time getting a diagnosis. Thank you "sunflower" for your e-mail address. Good luck to all of you, SherP.S. I am nervous about the treatments, fearful of the reactions and side effects, an advice would be appreciated. Thanks
    Anonymous 42,789 Replies Flag this Response
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