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08/17/2010 01:33 AM

I think I have CVID and symptoms getting scarey!

Posts: 12

Hi everyone!

I have an appointment at Mayo clinic next month and I want to be prepared so that I get the most out of this appointment as possible!

I just had major back surgery 2 1/2 months ago and it seems like it caused a major shift in my whole body! Like for example, I have not had a menstrual cycle ever since my surgery, at the end of May! If I don't get it within 2 weeks, it will have been 3 months without a period- at which point it is then referred to as a condition called "Secondary-Amenorreah" I learned that there are many causes of this and that it is serious. Interestingly, I keep getting Thrush of the tongue infections! I don't know if it ever completely goes away, or if it is a new infection each time- but it's pretty crazy and I have never before had this problem! I'm not sure if these two things could be related to P.I or CVID. Does anyone know, or has anyone with any type of P.I had this happen? I am kind of hoping it's an immunodeficiency problem, cuz the alternative cause is much scarier- possible brain tumor in the pituitary gland or the hypothalamus- both of which are responsible for hormone function that cause menstruation, and thrush can be caused also by hormonal disfunction- grrrrr!

Also, I have lost nearly 25 lbs. in the past 2 1/2 months, which is surprising, considering i have been laid up & recovering from surgery doesn't allow for much exercise at all! If anything, i should have gained weight!

The worst part of all this, is that I am waking up each morning to excruciating pain & swelling in different joints each day! Like one day it will be my shoulders, another day- my ankles, another day my hands & wrists! It is affecting many other joints too and sometimes it's so bad I can't move, much less get out of bed!

I also have chronic Lyme Disease, and joint pain is a symptom i am use to with that, however this seems much more severe- and independently different from what I have previously experienced with Lyme Disease! The fact that it is so predominant in the morning and so debilitatingly painful- makes me think something more is going on!

I was diagnosed like 15 yrs. ago with an immune disorder whereby I have low protein compliments in my blood- meaning I have a hard time fighting infection- but it's never been this bad!

I had an intestinal infection called c-dif, which i think is still present- despite antibiotic treatment.

According to research I did about P.I.- Primary Immunodeficiency, it seems my symptoms totally align with the type of P.I. called C.V.I.D.- Common Variable Immunodeficiency Disease.

I have so many crazy symptoms going on, all of which are very significant and are robbing me from any quality of life right now! I am extremely tired and fatigued all the time- like i can't get enough sleep even when i do! I feel so sad alot and find myself crying much more often than i ever have before- it's a very lonely place to beSad

I am getting really scared that something big is going on in my body and if it doesn't get treated soon, I am worried that I will suffer permanent damage or loss of function! Does anyone have CVID and can relate to my symptoms enough to tell me what I can expect going forward? Should i maybe see a specialist locally before i go to Mayo, or will i be ok if i wait til my appt. next month? Any info that anyone can offer, i would be so grateful for!!!

Thanks so muchSmile

Post edited by: miserynme, at: 08/17/2010 03:11 AM


08/20/2010 07:49 PM
RobbykPosts: 91

Have you had your Immunoglobulin levels checked?? I have Low IgA, also low IgM, and two of my IgG subclasses are low. according to the immunologist I saw at UNC they are not low enough to qualify as CVID. I also showed two antibody bands on my Lyme western blot.

Maybe there is a connection between the two disorders, weird.

What is the low protein complements Immundodeficiency you have?? and what lab test was used to diagnose this out of curiosity??

Be sure to ask the immunologist to check all immunoglobulin levels, because that is how the diagnosis is made. But even if they are low, they likely wont give you IVIG if you have Immunoglobulin A deficiency because there is a risk of some autoimmune condition. thats why i couldnt get any help from the immunologist.

07/28/2011 07:18 PM
Posts: 18

I was diagnosed with CVID in 2006. I always knew something was not right with my immune system. I had pneumonia a lot as a young child and always caught everything all my life. I catch a lot of upper respiratory infections, fungal infections, etc. I have a lot of pain in different joints as well. So far I remain status quo, but if it gets too a point some type of transfusion is necessary. My doc said it may never get to that stage. I take a lot of vitamins and try to stay away from people who are sick.

Good luck. Try not to panic. Thrush can be from steroids if you use inhalers or nose sprays.


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