tests, blood work, etc

I log on and see...wow...a while since I last wrote something.  It's not because all the sudden you miraculously are healed.  Nope, that won't happen when you have a disease with NO CURE.  Sometimes the lag between the blogs is because you just don't feel that well or maybe just waiting on tests to share.  Yep, all of the above!  If you make it to the bottom of this very "medical" posts...you certainly get a round of applause, but hey, you never know what you might just learn that could help you on day!

I've shared before about my youngest and her health struggles.  Her immune system is comprised and very low.  Her doctor wants her to write down every time she is sick.  Nothing like being 18 and keeping a "sick journal".   Her future could hold IVIg treatments.  I'll let you google that one.  For now, we pray for her to stay healthy--hard to do when you can't fight off anything.  For her levels to not drop any lower--not that far to go before they are gone.  There are already folks with higher levels than her on IVIg treatments. 


It's up to us to keep up with our disease!  We are the ones who must fight for health care and medication.  I suggest a couple of things for you to think on---

1st-get your immunoglobulin levels checked.  All of us with autoimmune diseases need to know these levels.  There's an A, G, M, D and E that you should be aware of and what they stand for. 

If your immune system makes low levels of antibodies, you may have a greater chance of developing repeated infections. You can be born with an immune system that makes low levels of antibodies, or your system may make low levels of antibodies in response to certain diseases, such as cancer.

The five major types of antibodies are:

• IgA. IgA antibodies are found in areas of the body such the nose, breathing passages, digestive tract, ears, eyes, and vagina. IgA antibodies protect body surfaces that are exposed to outside foreign substances. This type of antibody is also found in saliva, tears, and blood. About 10% to 15% of the antibodies present in the body are IgA antibodies. A small number of people do not make IgA antibodies.
• IgG. IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus).
• IgM. IgM antibodies are the largest antibody. They are found in blood and lymph fluid and are the first type of antibody made in response to an infection. They also cause other immune system cells to destroy foreign substances. IgM antibodies are about 5% to 10% of all the antibodies in the body.
• IgE. IgE antibodies are found in the lungs, skin, and mucous membranes. They cause the body to react against foreign substances such as pollen, fungus spores, and animal dander. They are involved in allergic reactions to milk, some medicines, and some poisons. IgE antibody levels are often high in people with allergies.
• IgD. IgD antibodies are found in small amounts in the tissues that line the belly or chest. How they work is not clear.

High values

• IgA. High levels of IgA may mean that monoclonal gammopathy of unknown significance (MGUS) or multiple myeloma is present. Levels of IgA also get higher in some autoimmune diseases, such as rheumatoid arthritis and systemic lupus erythematosus (SLE), and in liver diseases, such as cirrhosis and long-term (chronic) hepatitis.
• IgG. High levels of IgG may mean a long-term (chronic) infection, such as HIV, is present. Levels of IgG also get higher in IgG multiple myeloma, long-term hepatitis, and multiple sclerosis (MS). In multiple myeloma, tumor cells make only one type of IgG antibody (monoclonal); the other conditions cause an increase in many types of IgG antibodies (polyclonal).
• IgM. High levels of IgM can mean macroglobulinemia, early viral hepatitis, mononucleosis, rheumatoid arthritis, kidney damage (nephrotic syndrome), or a parasite infection is present. Because IgM antibodies are the type that form when an infection occurs for the first time, high levels of IgM can mean a new infection is present. High levels of IgM in a newborn mean that the baby has an infection that started in the uterus before delivery.
• IgD. How IgD works in the immune system is not clear. A high level may mean IgD multiple myeloma is present. IgD multiple myeloma is much less common than IgA or IgG multiple myeloma.
• IgE. A high level of IgE can mean a parasite infection is present. Also, high levels of IgE often are found in people who have allergic reactions, asthma, atopic dermatitis, some types of cancer, and certain autoimmune diseases. In rare cases, a high level of IgE may mean IgE multiple myeloma.

Low values

• IgA. Some people are born with low or absent levels of IgA antibodies. Low levels of IgA occur in some types of leukemia, kidney damage (nephrotic syndrome), a problem with the intestines (enteropathy), and a rare inherited disease that affects muscle coordination (ataxia-telangiectasia). A low level of IgA increases the chance of developing an autoimmune disease.
• IgG. Low levels of IgG occur in macroglobulinemia. In this disease, the high levels of IgM antibodies stop the growth of cells that make IgG. Other conditions that can cause low levels of IgG include some types of leukemia and a type of kidney damage (nephrotic syndrome). In rare cases some people are born with a lack of IgG antibodies. These people are more likely to develop infections.
• IgM. Low levels of IgM occur in multiple myeloma, some types of leukemia, and in some inherited types of immune diseases.
• IgE. Low levels of IgE can occur in a rare inherited disease that affects muscle coordination (ataxia-telangiectasia).

I post that so that those of you, like me and my daughter, have this knowledge.  Get those levels checked.  There are also 2 other levels you should keep a watch over--your Vitamin B12, Folate and Vitamin D.  These levels are very important to those who of use who suffer autoimmune diseases (really they are important to everyone).   For me, these levels are either extremely low...or basically null.  So, an over the counter supplement won't quite do what I need.  I take high doses of D and I'm still on the low side.  I have injections for the B12 and again I'm still on the low side.  Yes, I eat healthy---or try my best too.  When a common occurrence is holding your head over the toilet, eating healthy takes a backseat to a bland carb and ginger ale.  I do get tired of hearing/reading about folks suggesting how they've "healed" themselves with certain "things".  If those of us with these diseases with no cure could be "healed" don't you think there'd be no more disease?  I also sometimes want to say, "would you suggest this to someone suffering with cancer"?  I know that sounds harsh, but those of us living with, what we call, "invisible diseases" wish more than anything that folks would try to "see" rather than suggest things for us---usually which require a purchase of some kind.  I live day by day and minute by minute--that's how this works for me.  One minute I can be fine and the next, yes, holding my head over the toilet...or walking normal and the next limping with pain. 

This post is very "medical" I know, but you are the best care-giver for yourself.  Every time you go to the doctor for tests, blood work---get copies of EVERYTHING!  Keep a file.  These are ours and we need to be able to access our records quickly.  I learned this the hard way!  There are numerous other blood tests that I go through because of the medications that I'm on (to help me be able to do life)--I'm sure those of you with autoimmunes can add to the list.  For now, I will fight with all that I am to win the battle--living with autoimmune arthritis ankylosing spondylitis--A disease that sometimes feels as if it's winning. 

AS has my body, but NOT me!