Hypogammaglobulinemia - Primary Immune Deficiency
I was diagnosed many years ago with Hypogammaglobulinemia.
It is a rare, genetic immune deficiency. My mother, my brother, and my son also have it. My antibody IgG levels are the lowest of all of us, but I am the last working adult in the household. They are on permanent disability.
I receive IVIG infusions once a month, but I can't stay well. In the last 6 months I've had appendicitis (appendectomy), an abscess and infection as a result of surgery, full blown influenza, (and just in the last month and a half) a cold turned into bronchitis which became pneumonia, and I currently now have strep throat.
During this time I also got a yeast infection from the antibiotics...the over the counter medication was failing me and I was desperate! I looked up remedies and found a specified vitamin list of what to take and not to take..I was amazed!! It was gone in less than 24 hours.
I currently take lots of vitamin c (6000 mg) and a multi-vitamin. I find myself desperate once again for a solution. I have worked too hard and come so far to be this chronically sick.
I love my job as a chef and don't want to give up my dream. I just can't go on like this. If this keeps up I'm going to end up on disability or I could even die...it's getting that serious!
The doctors are at a loss of what more they can do. I have to take my health into my own hands and start doing some research.
Is there some aggressive vitamin regiment that you recommend for people who suffer from chronic immune deficiency? Any info would be a big help.
Also, please post this to raise awareness for this disease. I believe it is more common then they say...most dr's don't even know how to write the lab slip to test for it.
Also, I want to encourage others to donate blood! Without my monthly blood infusions I would have been dead years ago! Thanx for taking the time to help others! I wish there was more people in the world like u!! -Amy
Thank you very much for sharing your story and raising awareness of this particular immune system disorder.
Let me explain briefly what hypogammaglobulinemia is so others may understand what you are
People with hypogammaglobulinemia (pronounced hypo-gam-ma-glob-u-li-ne-mia) produce very low levels of antibodies, which makes them highly susceptible to common bacterial and viral infections. A minor infection that would be a simple annoyance to those with normal immune function could prove deadly to someone with this disorder.
I am more familiar with this condition being called common variable immunodeficiency (or CVID).
People with CVID have defective adaptive immunity, which is also known as the acquired immune response. This immune response is specific to the particular pathogen that is encountered and depends on specific white blood cells called lymphocytes.
There are two main types of lymphocytes – T cells and B cells. T cells recognize pathogens that have infected our cells. B cells recognize pathogens that are outside our cells. People with hypogammaglobulinemia either have defective B cells, or have defective T cells that do not properly alert B cells. Much more research needs to be done to fully understand this disorder.
What we do know is that people that suffer with this have B cells that simply cannot make enough antibody. Low levels of antibodies means that the body cannot properly clear bacterial and viral infections.
Typical treatment involves regular injections of antibodies that have been extracted from the blood of immune sufficient donors. Without this life-saving treatment, bacteria or viruses would grow out of control.
As for recommendations on staying well with this kind of condition – I would look to make the most out of what you do have. I'm talking about improving your innate immunity, since your adaptive immunity is what is flawed.
Having a strong innate response will cause you to rely less on your adaptive immunity (actually, your blood transfusions). Innate immunity is your first line of defense against infections. It isn't as targeted as the adaptive response, but it does mount different responses against viruses and bacteria.
Strong innate immunity can clear infections without help from lymphocytes.
Boosting your innate response can be achieved by taking a high enough vitamin C dosage and maintaining proper levels of vitamin D. Good nutrition also plays a part in both immune responses.
Also check your body pH, as immune cells have trouble functioning optimally in an acidic environment.
Hopefully this has given you some information that you can use to move forward.
Wishing you the best of health,