Immunodeficiency Or Low Immune – Getting IVIG Covered
**I am no expert on immune systems and this information may not be 100% accurate but I am sharing with you what I have learned over the years with my immune system problems.
Over the last 4 to 5 years of getting treatment, I had a lot of blood work done. My immune system was rarely checked before finding a good LLMD because my GP’s did not seem to care or want to look at the whole picture. I was only 10 months old when I had Osteomyelitis and I lived in the hospital for months with an IV in my ankle bone getting antibiotics. At that time my doctors knew I would always be sick or susceptible to bugs my whole life with a high risk of having juvenile arthritis (JA) or rheumatoid arthritis (RA) as I got older.
My current LLMD is piecing together my life and believes maybe a tick was brought in by one of our cats and I got Lyme as a baby in my crib. If not we know it was definitely when I was 8 years old and possibly re-infected when I was in my early 20’s. So maybe after getting infected by the tick as a baby my immune was shot and allowed me to be sick all the time the rest of my life with some rare diseases most kids never get or it could have just been from the osteomyelitis we will never know. I had the flu a few times a year, colds, bronchitis, strep throat, ear infections… you name it I had it frequently.
So fast forward to 4 to 5 years ago and my immune was “weak” on paper. My IgG was always low but my IgA was usually a point or 2 above low/borderline low so my diagnoses was just a “weak” or “low” immune system but they would not call it an immunodeficiency. I wondered why that was until I found out. My doctors would always say “I would like to get you on IVIG but you will not be covered because your numbers aren’t low enough”. It turns out Medicare will not cover IVIG unless my IgA was literally low (not borderline or even 1 point above low for example I had 91 when low is anything under 90). So Medicare will only cover IVIG if your IgA is below 90 then you are considered “immunodeficient” and not just a weak immune system I guess. My current IgA was 40 and my IgG subclass 1 & 3 are low but I cannot find my IgM numbers. I am not sure what other insurance companies consider low enough to cover the IVIG.
So when I took this last set of blood work my LLMD had a smile on her face and she said “you are finally low enough to get IVIG covered, this is a good thing!” So this will help give my immune a boost and keep those numbers regulated hopefully and maybe my immune will strengthen and start to fight off bugs again. I wish I could have been on IVIG for the past 4-5 year while I knew it was low (which it could have been low my whole life nobody ever checked that I know of or seemed concerned by the numbers). I know of a few Lyme friends who are also getting IVIG so we are going through this together and supporting each other.
This last visit to the ER the nurses and doctor all kept questioning why I was on IVIG but then when they saw my numbers they said “do not give up doing them you need them”. So no matter how much pain they cause or the bad reaction I had to my first one I will keep doing them. I think these are the best thing for my body right now since I can no longer take any antibiotics. I have always used supplements and immune booster pills for years and I can see those never really did much.
Selective IgA Deficiency is the most common of the primary Immunodeficiencies. It is defined as the total absence or severe deficiency of IgA. Blood serum levels for IgA deficient persons are usually found to be 7 mg/dl or less, while serum IgA in normal adults ranges from 90 to 450 mg/dl.
Hope you all have a better pain and flare-free week. Find your reason to smile today!