Posted by sassykitten93 @sassykitten93, Dec 12, 2018

What is hypogammaglobulinemia? I cant tell you much because I have not found much myself on this topic except that my body has quit making antibodies I think. if any one has insight please add to this

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So I am a cancer survivor and received high dose chemo. About two years after the chemo, my eyes started to get red all the time and I started battling phlegm and sickness all of the time. I had/have to sleep in different rooms than my wife due to all of the coughing. My cancer doctor tested me for immunoglobulins and I had none essentially. It’s an answer and I get IVIG now but other than antibiotics I want to know if there are ways to better live with this


Hi all,

My name is Andrew. I’m two years into getting hypogammaglobulinemia and boy is it a struggle. Tough to find joy sometimes. I’m 36 with a little boy and another on the way. I currently have a fever and will get antibiotics tomorrow from my infectious disease doctor. What are some best practices around managing this?

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@healthplease Hi, Andrew, I’m really sorry to hear that you have this especially with young children in the house. I included an article by the Nat’l Institutes of Health explaining all about hypogammaglobulinemia. If you scroll down the page, you will come to a section on treatment and management. You might also make a list of questions for the infectious disease doctor. Questions like ‘how to avoid infections with young children in the home’ and ‘is mask wearing important’ and what vaccines are safe and important to get.’
Is your wife supportive of your illness? She will need to be very involved in helping you avoid infections.
If you think back, was anyone else in your family having a similar problem? Who?


in reply to @healthplease I have the same diagnosis. Please check out the Immune Deficiency Foundation, where you can find vast amounts of information about this condition. Like you, I have tried everything, and have actually been told by my pharmacist to purchase a certain kind of honey from New Zealand, expensive, but well known for its curative properties. I have just purchased the 850+ one, having recieved a $50 gift certificate for taking a survey for their new marketing campaign. They have a great quiz on their website that is also very informative. And by the way, the honey is the best I have ever tasted. Manukora. Great people and beekeepers. Check it out


And don't forget that April is Immune Deficiency Month. You can check out all of their activities on their website. This is one of the finest non profits I have worked with. After all, they are paying for my trip to their conference in June Chicago. With everything I have faced during the month of March, this trip is all I have hope for, presently


I have had a low IgG (1/3 of the low range) for years although I haven't been diagnosed with hypogammaglobulinemia. For whatever reasons and I'm not unhappy about it, I have not been subject to numerous respiratory infections although I seem to get massive UTI after being scoped. My heme/onc has started me on IVIG quarterly, I'll see if this improves the situation. I have Smoldering Myeloma and Polymyalgia Rheumatica. I've been taking Prednisone for years now. So I'm not sure what is responsible for the deficiciency. I hope you get the information and treatments you need.


I have numerous autoimmune diseases and immune deficiency (IGG. IGM). This combination seems paradoxical and I think of it as flip sides of one coin, where the immune excess, the autoimmune disease, is toward your own body tissues and the immune deficiency is toward the germs in our environment. An allergy/immunology doctor usually manages the deficiency. IV infusion of immune globulins (IVIG) is the mainstay of treatment, as well as avoidance of exposure to people sick with contagious illnesses. If autoimmune symptoms exist, a rheumatologist should be consulted. The immune system is so complex it is hard to wrap your head around these problems, but the learning curve can be managed with time and persistence.


This month is Immune Deficiency Month, and I would recommend to anyone suffering from this disease, to check out the Immune Defiency Foundation website, as they have a wealth of information, and they also have many functions going on this month; and finally, you can participate in a monthly Zoom meeting wherever you live, and they are great in terms of connecting with others who share our "disease."

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