Not diagnosed but have questions

[lissy78]

Hello everyone,
I'm completely new to even knowing about these deficiencies and thought I'd gain more accurate information from those that have it..I have been suffering from a unknown illness for over 8 years and have had countless tests,most doctors think I have a autoimmune disease but I never have antibodies towards those diseases. So through my own personal research I spoke with a few online people that informed me in very rare cases you can have PID, or CVID and that could prevent your body from making those antibodies that all my doctors have been waiting for all these years!!! I was in shock and have read as much as I could sense hearing that news, but online medical journals only go so far..so here I am. I was sickly as a child with chronic ear infections, strep throat,and upper respiratory infections but I thought that was pretty normal. I felt better with pregnacy and then I just got the ultimate sick a few months after my last child and have felt sick ever since. I feel like I have the flu pretty much daily, with gastro issues weight gain bloating but absolutely no appetite but gained 30 lbs without eating but 2 times a week.I don't seem to get serious infections but when I get them they happen in multiples (sore throat,yeast infection,skin rash)( tooth abcess,eye sty,swollen joint) like that.I rarely have fevers even when I've needed antibotics,and I've had a few fevers with no signs of illness... kinda bizarre. Swollen lymph nodes are pretty frequent and I believe my spleen has been inflamed based on the location and tenderness.All these symptoms seem to be the only ones relevant for immune but I have many others that pertain to autoimmune that I won't go into.

My questions, if you have immune deficiencies does that mean no antibodies would show up at all?
Would PID cause bad reactions towards vaccinations as a child?
And if anyone has PID OR CVID with autoimmune disease has it been difficult to balance treatment?

Thank You ahead of time☺
Lissy

[kelton]

Hi lissy, i am going through the exact same thing. i wasnt sick as a child but noticed in my 20's i was getting strange bacterial infections, i was at the doctor all the time with horrible anxiety over wondering what was wrong with me! streph, staph infections and sinus infections that were hard to treat, but not all the time! then i got pneumonia once in my 30's. i notice that when i get a cold it would last a very long time, but usually goes away without antibiotics. fast foward to this year, i had a baby one year ago. when he was 4 months old i had trouble swallowing food, it was getting stuck, they tested me for scleroderma and was weak positive, i dont have enough other symptoms for diagnosis, then 2 months later the muscle and joint pain started , then the dry eyes and mouth! i test negative for sjogrens and my ANA test is always negative! during all of the work up for this they tested me , and came up with low IGG and IGA, now it is making sense, all those years of sicknesses,and now autoimmune problems that i dont test positive form . i am currently in the work up to get officially diagnosed with CVID. the worst part of all of this is i had my one year old tested and he also has it. I am devistated and have been crying nonstop! i cannot believe that i passed this onto my baby! i feel horribly guilty and so upset that i wasnt diagnosed sooner. I probably would not have had kids if i would have known. i am lost and devistated and feel hopeless. most of the time this illness is diagnosed later in life and after a very long process with doctors missing the diagnosis for years! i think the hard thing with having both is that autoimmune diseases are treated with immunosupressants and that wouldnt be good for someone with CVID, so i dont know what i am going to do. i also dont have any diagnosis of autoimmune,just lots of symptoms of different diseases.

[lissy78]

Hi Kelton,
Glad to get a reply I see this forum isn't very active..sorry for what your battling it's a long confusing terrible road and Im glad your getting closer to a diagnosis. I know your worry about passing illness onto your child, I have the same fears and one of my children does get up to 12 throat infections per year and hives from viruses and she is 9, and my kids have seem me sick for so long I see concern in their faces and they worry about having whatever I have and it's sad. But it has motivated me to keep seeking answers and get the most information I can so they don't have to suffer like me. Don't beat yourself up and Im here whenever you need to vent.I have symptoms of scleroderma & lupus had heart failure and partial lung collapse when I was 29 and now have a mysterious platelet disorder.I haven't had igg iga or any of those tests yet but will be having them soon IM DEMANDING IT.
Well I look forward to hearing from you and hope your having a good day.
Lissy