I learned last Thursday that I have an immune deficiency. Unfortuantely, at this point in time, that's all I know. I've been sick since I was 15, at least that's where we think it all started. I've had so many infections sinus, throat, chest, ear, that the doctors didn't know what to do with me. Unfortuantely, I come from an area where when they don't know what to do they just don't do anything. I finally took it into my own hands at age 18, and started researching my symptoms and my doctors sent me wherever I needed to go in order to be tested for everything that I had symptoms for, which was a lot since they were so general. I was finally told I must just have Fibromyalgia, and was then sent to doctors to tell me what to do about that. In the process, I went to an ENT for my infections. He did CTs x-rays, all sorts of tests and couldn't find a reason for my constant infections so he sent me to an infectious diseases doctor. She tested me for everything AGAIN. When I got my results back, she said that my immunoglobulins/antibodies were low, so I had an immune deficiency for sure. And then she said she would refer me to an immunologist that she thought would be good for me, and told me they would probably give me the antibodies I needed once a month. So like the true college student that I am, I researched. It all seemed pretty serious. I've felt deathly ill many times, with 104 fevers and infections that made me bleed and wouldn't go away even with antibiotics. As it is, I've been on antibiotics now for 7 out of the past 8 weeks for 3 different infections. And the sinus infection is STILL there. I have an appointment tomorrow morning with the immunologist and I'm terrified. I've been treated like an idiot who was making something up for so many years, I've been told I was fine, and nothing was wrong and that it must all be in my head. My father is a psychologist and wants to try treating me with his own methods. He's in denial that his daughter could be seriously ill. Regardless of which one I have, or how they treat it, I've known longer than anyone else that something was badly wrong in my body. A few times, I thought I was dying, I really did. I don't know if anyone else has felt this way but I'd get to sick I couldn't pick my head up, and when I talked I didn't know who I was talking to or where I was or even who I was sometimes. I also had high fevers when this happened, but still. I felt so close to death before, and I wonder if I was just delirious from fever or if it was possible that I really was "deathly ill". I could really use some feedback from those of you that have experienced this before. Does any of this sound familiar? The years of waiting for a diagnoses? The feeling of dying? Knowing the everyone around you didn't believe you? Please let me know! Thank you so much!

Leah

Hi i have the same thing, as well as my brother, i am 20nand was diagnosed at age 16 but my mom said i had it all my life, like my brother. i have been getting IVIG for 4 1/2 years and im pretty used to it, i am still sick alot but it has helped. how old are you? where are you from, it would be good to stay in touch!!

I'm 21, and have been sick all of my life. I went to the immunologist on Wednesday morning and she said that I have an IgG subclass deficiency. We're not really sure how I got it or why, just that it's there and has been for a really long time. I'm about to have more tests done so we can narrow things down a bit and get a better idea of what is going on in my body. Today I had to go back to the doctor for another infection. I just finished my antibiotic 2 days ago and they had to put me back on it. They did say they'll do the IVIG after all of my tests come back and that I'll probably feel a lot better. It's really hard to live like this isn't it? I mean we're young and we're supposed to be all energetic and able to do anything. I feel so much older than most people my age because I've been through so much with my health and because I've spent so much of my time sick and unable to do things. Also, I live in Panama City, FL and no one here really knows much about these diseases so it took FOREVER to find a doctor that was competent enough to diagnose me. What has your experience been like? I would love to keep in touch.

-Leah

WELL WHERE DO I BEGIN??? MY BROTHER( WHO IS 17) HAS HAD DYSGAMMAGLOBULINEMIA FOR HIS WHOLE LIFE AND HAS HAD IVIG, MY MOM HAS ALWAYS SAID THAT I HAD IT, AND SO HAS MY DOCTORS, BUT I GUESS THEY JUST WAITED, OR HOPED IT WAS JUST A PHASE. BUT I LATER STARTED GETTING SO MANY SINUS, RESPIRITORY , STREP, AND BRONCHITIS LIKE CONSTONTLY. THEN I HAD TO GET SINUS SURGERY, MY TONSILLS, AND MY ADENOIDS OUT-ALL AT ONCE! AND THE SURGEON SAID THAT I HAD THE MOSTINFECTION IN MY SINUS'S THAT HE HAS EVER SEEN.SO MY MOM TOOK ME TO MY BROTHERS IMMUNOLOGIST AND I WAS DIAGNOSED PRETTY QUICK, THEY TOOK LOTS OF BLOOD AND THEN I GOT MY FIRST IVIG THE NEXT MONTH OR SO. I HAVE HAD SO MANY HEALTH PROBLEMS ITS NOT FUNNY. JUST LAST DECEMBER I HAD TO HAVE MY 8TH RIB COMPLATELY TAKEN OUT!! ITS PREYYT CRAZY. IT FEELS NICE TO TALK TO SOMEONE WHO UNDERSTANDS WHAT I HAVE TO GO THROUGH! WELL GOOD LUCK, WRITE BACK WHEN YA CAN, OR YOU CAN E-MAIL ME AT
s_elleman@yahoo.com. talk to ya soon

That is insane! Thankfully I haven't had any surgeries and my ENT told me that he didn't think a sinus surgery would help me. Unfortunately though, I have a sinus infection just about all the time. The one I have now has been treated with 3 different antibiotics and still hasn't gone away. It's better but not for long, I always get put back on antibiotics again. They're talking about testing my family because they could have this or have something like it. Right now they're calling it an Igg subclass deficiency. I'm supposed to have a lot more bloodwork done but I live in a small town and it looks like no one in this town will be able to do the tests so they're checking around for me. The immunologist called me today and said I needed to see her right after I have the tests done and they need to find out my blood type. They didn't say why they needed all of this...kinda scared me a little. They did tell me that I would have IVIG but not until November probably which is killing me having to wait so long when I know I could feel better, even if it's only a little better. It is nice to have someone to talk to, and sorry it took me so long to respond. I've been having computer problems lately. Hope to talk to you soon!

Forgot to leave you my email, it's lonesapphire@gmail.com

HI AGAIN, YEAH ITS BEEN PRETTY CRAZY BUT I GUESS YA LEARN TO LIVE WITH IT. THE NAME FOR MY IMMUNE DEFICIENCY IS DYSGAMMAGLOBULANEMIA...I KNOW PRETTY CONFUSING, BASICALLY IM JUST SICK ALOT, PROBABLY LIKE YOU! SO ARE YOU IN SCHOOL? WELL IF YOU EVER WANNA CHAT, YOU CAN E-MAIL ME (S_ELLEMAN@ YAHOO.COM)OR JUST WRITE BACK ON HERE! GOOD LUCK , I HOPE ALL IS WELLHOPE TO HEAR FROM YOU SOON.

Dear Leah,

My name is Laura and I live in El Paso, Texas. Your story sounds so familiar to mine. My mom lives in Orlando, Fl. She is a nurse. She was just here to take me to doctor's appointments to tell the doctors what they need to do for me. I don't understand why these doctor's are not wanting to help us. I too, have been sick all my life, but since January of '05 I have been very sick. Infection after infection. Sickness after sickness. And all the doctors do is treat the symptoms with antibiotics and send me on my way. I have an infectious disease doctor and have consulted with an Immunologist. You basically need to research it yourself and then tell the doctors what to do. Do not be afraid to step on their toes. If you are having a problem and the research you have done tells you to have certain tests run and your doctor doesn't mention them then you tell your doctor that you want these tests run. And don't let him talk you out of it. Once you have been diagnosed with this disease they need to answer the question of why your IG's are low and what other problems are you having.I have had 1 IVIG treatment in September and am due for another next week. I have been doing really good just after my first one. Hope this helps.

Laura

Hi Laura! Sorry it took me so long to respond to your message. I hope you get this. Anyway, I agree. I've had to fight with them to tell them what I need and which tests I think need to be done. I have been officially diagnosed by now, but only because I told them what to do. I wouldn't let it rest. MY health is very important and there are things that I really want in life and I can't sit around and wait for them to decide I'm sick enough to do something about it. I went to doctor after doctor and they finally started to come through. I've been told now that I have an IgG subclass deficiency and they do want me to start IVIG but I have to have a bunch of other tests done first because they need to narrow everything down for me. I think I'll be starting IVIG in December or January. They're talking about sending me to a teaching hospital in Alabama to have everything done. Sounds like that's kind of what they did for you. Do the IV treatments make you feel a lot better??

Leah