Hypogammaglobulinemia - Primary Immune Deficiency

by Amy
(Anaheim, CA)





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


RESPONSE


Hi 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 going through.

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,

Melissa
How to Boost Your Immune System


Comments for Hypogammaglobulinemia - Primary Immune Deficiency

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Will it get better? Can you work? Response.
by: Amy

IGG infusions will help your body to fight off some infections. It doesn't work like a normal immune system though. You will still frequently get ill, the infusions alone can make you feel ill. IGG has improved my quality of life substantially, but I still have to be so careful with germs, rest, stress, allergies, and especially exposure to public places. Everyone reacts differently to IGG therapy...some run marathons, work actively, and can function normally....others (like me) can't go in public (without mask, gloves, Clorox wipes), still get infections, still get hospitalized, develope autoimmune issues, and end up on disability. Social security disability is finally starting to recognize CVID and PIDD as disabilities. I did everything in my power to avoid disability, but it became necessary. There is no cure for this disease. IGG therapy is the only treatment.

hypogammaglobulinemia
by: Anonymous

hi i have just been told that the reason for my recurrent chest infections is because of this immune disorder...will it ever get better with thr transfusions??? and will i be able to get disability payments or will i be able to keep working?? i am confused and i have not as yet started the treatments..thanks

Raising kids with PID or CVID
by: Amy

Hypogammaglobulinemia, CVID, or PID affects different people in different ways. I know some that just get IGG infusions and are fine and active!! Some children grow out of it. Some kids you have to be careful with like setting limits, but otherwise they can participate in school and activities. Then there are some that will be very fragile. Be careful with live vaccinations!!! Ask your pediatrician for the non-live vaccines!! I recommend joining a support group on Facebook...tons of information and zebra love out there on social media! Best of luck and prayers for the kids.

hypogammaglobulinemia
by: Anonymous

My son who is only two was diagnosed about a year ago. He takes weekly infusions but he also takes an antibiotic every other day even when he is not sick. This has helped tremendously in bringing down the number of infections. I also give him green powder supplements and drops of vitamin D in his juice. With all of the above he seems to be fairing pretty well. He almost died twice but now we have been at least a month with no infections!! Good luck to all of you! !

Gillian and everyone who has this disease
by: Amy

Just to let you all know you can go on the IDF website and request information. They have sent me a ton of literature and a quarterly magazine absolutely free!! It's been a great tool in educating myself and dr's! Also I have found loads of support on Facebook support groups for CVID!! Lots of answers out there as our community grows!! Zebra strong!!!!!!!

i need help
by: dennis

i have a 9 month old daughter who has hypogammaglobulinemia. will my daughter be able to go to school when its time and what all am i in for i had to quit work to take care of her im a single parent

Response
by: Amy

Don't be frightened! I've learned dealing with this disease that I had to make some life changes and change my outlook. I was on IVIG and now I currently am doing IGG subcutaneously. I recommend that you google "the spoon theory"! It helped me a lot! In the last few months I've had to go on disability and weigh the quality of life vs. the chef job that I love. I chose to let myself heal and listen to my body. I am an extreme case. The IGG will make you stronger, but doesn't work like a regular healthy immune system. You will still be susceptible to infections but the Igg gives you a better chance at fighting it off. After your first IVIG write down all the side effects, so the dr can properly pre-medicate. They use to give me a steroid shot or Benedryl shot before each infusion. Although, a rare disease you are not alone. Take care of yourself and get to an immunologist ASAP...also important to have a great PCP that you trust! God bless and keep commenting if you need more answers

Newly diagnosed, and a bit scared
by: Gillian

Well hello all. I am in the early stages of Hypogamaglobulinea. I have had 2 tests of my blood, and the latest shows the following; IgG 532, IgA 55. The research I have seen, states its Hypogamaglobulinea.
As I am in the early stages, have not seen a Immunologist, Or Hematologist. Reading the complications, and treatments themselves is quite frightening.
Should I be frightened? The IVIG procedure I am really not looking forward to.
Thank you
ps, Is there anything any of you can help me with, in regards to this?

Hypogam.
by: Anonymous

Hi there,
I was diagnosed with Hypogammaglobulinemia when I was in the 8th grade. I couldn't go to school at all, I was sick 24/7 (2 bouts of tuberculosis and many cases of pneumonia). My immunologist put me on immunotherapy via a port they implanted in my chest. Right now I am currently a college freshman, and running track for my school and my country. This disease really is limiting to people because of the symptoms.

Best of luck to you all!

HypoGammaGlobulinAnemia
by: Steve

Hi:
I was diagnosed with this condition several years ago. I am now 46. I went through a lifetime of infections, constantly on antibiotics and finally losing tonsils and appendix. Without the right treatment, you will never really feel well. Changing your diet and vitamins will not help overall. The problem is your immune system and how it does not work. Generally, your B-Lymphocytes are not producing IGg's. If you are having hight levels of bacterial infections, this is the cause.

You should be seeing an immunologist, who will place you on a IV treatment of IG's every 3-4 weeks. If you have alergies as well, you may be placed on a treatment of Privigen, which is a purified IGg treatment. Otherwise, you will need Benadryl or steroids before having each treatment. The problem with IVIGg is that the treatments are far apart and you will probably go through a roller-coaster effect on your immune system (highs and lows). I was on these treatments for some time but now use a SQ Igg, subcutaneous infusion into the fatty cells of your body. You do this yourself, it is rather painless, and you will get used to it. There are a couple of products out there such as Vivaglobin and Hizentra. In my opinion, Hizentra is better because it can be stored at room temperature and you can travel without having to refrigerate. The infusion is done with a 22 gauge (can be changed) butterfly needle and a syringe. The "push" method is used, meaning that you deliver at the rate that you are comfortable with. I have to infuse four times a week, three times a week with 20ml and once with 5ml. It takes anywhere from 5 - 20 minutes an infusion.

You should investigate further and not rely on diets and vitamins to fix you because they won't! Seek treatment from an immunologist. I will be happy to answer anymore of your questions if you reply here.

Steve

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