Immunodeficiency Or Low Immune – Getting IVIG Covered

25 Mar

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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!

 

 

 

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15 Responses to “Immunodeficiency Or Low Immune – Getting IVIG Covered”

  1. Ang Pro March 28, 2014 at 10:51 am #

    Hi Bry First; thanks for sharing your experiences. It has been helpful to me. I stumbled upon Cannabis oil; rick Simpson info.

    It sounds promising. Have you heard of; or thought of it?

    Hope you are hanging in there 🙂

    Angie On Mar 26, 2014 1:01 AM, “Lyme Inside – Living with Late Stage Lyme

    • 49erBry March 28, 2014 at 11:19 pm #

      I’ve heard of it and I would recommend it is worth trying for anyone. I use mmj daily and it has really helped me in many ways. I think it will help with seizures, appetite, nausea, vomiting, some pain (not much for me)…

    • 49erBry March 28, 2014 at 11:19 pm #

      Hope you are having better days! thank you

  2. Brian March 28, 2014 at 4:31 pm #

    My immunoglobulins are I think mostly normal–last time I checked. But I may have to double check that since they are clearly important. But I think IV would be too much of a hassle for me, I don’t even want to return to IV antibiotics. Annoying, expensive, time consuming. But I hope they’re working to bring your levels up, 49er.

    On Sunday I do my hydrogen / methane breath test for small intestinal bacteria, with a two week turn around time. I am so excited to do this lab since I have stomach nausea and cognitive issues, and I am making absolutely no progress with any abx. I even made no progress with IV ceftriaxone. There was no point continuing due to potential resistance issues. I pray that my intestinal lab comes back positive.

    • 49erBry March 28, 2014 at 11:26 pm #

      If your numbers are above low or normal you should be fine. If they ever drop low you most likely want the sub-q which is injection instead of IV. Thanks I hope it starts to boost my immune. Good luck with the test, I found 3 different parasites in my intestines/liver I didn’t know I had so I think it will be good to do a parasite cleanse soon. They can cause all sorts of issues. If your lyme isn’t getting any better most likely a coinfection is in the way. Hope the test goes well.

  3. vm March 29, 2014 at 10:48 pm #

    OK. I’m just gonna come right out and say what I really think:

    If, like me, you have been on antibiotics for 5 years or more, the infection is probably dead. Whatever pain we are experiencing after all these antibiotics is some else – maybe left over from the disease or some nerve malfunction caused by Lyme and/or caused by the destruction of Lyme by antibiotics.

    Borrelia Bergdorferi is notoriously difficult to culture in a petri dish outside of the host. Any company saying they were able to grow spirochetes from your blood is a complete scam.

    One of the worst problems we have is an over-active immune system that is trying to kill and rid our bodies of something it cannot find. So, it sends out an all-points-bulletin to kill anything that moves thus causing an incredible amount of full-body inflammation esp. in the spine and brain (the encephalitis part).

    We all know that this hurts like hell. By what logic are you convinced that increasing an already over-active immune system to kill something that is already dead is a goog idea?

    Do you know what it’s doing instead of killing a dead disease? It’s killing you. The immune system sends out its killer cells to attack your healthy cells. This includes the myelin sheeth surrounding each nerve cell. THIS IS NOT A GOOD IDEA.

    Do not allow any further destruction of those sheeths because they are what insulate the electrical impulses produced by your neurons. If Lyme has already damaged those, don’t damage them any further by building up your immune system to a frenzied level that lands you in the hospital.

    Your immune system can literally kill you. Look up the “Spanish Flu” epidemic. It wasn’t the actual flu virus that killed all those people but instead what killed them was their intense immune reaction to it – extremely high fevers.

    Stop this insanity. IVIG is not proven to help Post-Lyme. Do you know anyone with your level of pain that has actually benefitted from it?

    What if all this pain you are in is for nothing? What if you’re not supposed to feel further pain to get better. Worse, what is all this pain is preventing you from getting better?

    What if what we all think of as the “Herxheimer Effect” is actually some other pain mechanisma all together? What if the pain is not from toxins released by the bacteria (toxins that NOONE has been able to name the chemical structures of, by the way) but instead all this pain is from damaged caused by Lyme to our nerves?

    This makes a helll of a lot more sense to me than some mystery toxins noboday can concretely identify!

    This would also be why all these treatments to remove toxins and boost the immune system have proven fruitless.

    Bri, you are NOT supposed to be in this much pain. It is not good for you no matter who says otherwise. You know this deep down. Please listen to that inner voice?

    • 49erBry March 31, 2014 at 1:00 am #

      I don’t disagree nor agree because nobody really knows what is going on. But my immune is dropping point rapidly so I have to do something to keep my numbers from becoming so low I go into isolation like my lyme sister is. I tried many natural immune boosters but they failed me. I believe my lyme is alive and active and the test I took is legit. So I am at a point where Lyme has caused so many other medical issues but I know my lyme will never be in remission or “cured” because it’s too late I have had it my whole life. I am at peace with it but I do need to focus on fixing my body and immune and killing coinfections so I just do what I can and hope for the best. It gets to a point where we are lost and try what may have helped others I guess. So I am not against what you are saying I just don’t know enough about lyme and nobody does.

  4. SHERRY SMITH March 30, 2014 at 10:44 am #

    You sure have had your share of pain,,,,,,,,,keep you in my prayers always, Sherry better days are coming!

    • 49erBry March 31, 2014 at 12:54 am #

      Thnak you, and for you as well

  5. Brian March 30, 2014 at 3:57 pm #

    Hey 49er, I’m wondering, where did you previously acquire c diff? The reason I’m wondering I guess is because I am trying to protect myself from this seemingly nasty infection, so I am very ocd about washing my hands and being sanitary. Did you get this germ from some medical center or some random place such a grocery store by failing to wash hands?

    • 49erBry March 31, 2014 at 12:53 am #

      I got the c-diff from taking so many combo aggressive antibiotics so I got it from taking abx. I was using high doses of VSL#3 and many other probiotics but it didn’t stop me from getting c-diff. At that time I think I was on Rimfapin, Tindamax…and some abx I was taking together in high doses. It was horrible and hard to get rid of.

      http://www.uptodate.com/contents/antibiotic-associated-diarrhea-caused-by-clostridium-difficile-beyond-the-basics

      C. DIFFICILE RISK FACTORS

      A number of factors can increase a person’s risk of becoming infected with C. difficile.

      ●Current or recent antibiotic use — Certain antibiotics increase the risk of becoming infected with C. difficile more than others (table 1).

      â—ŹCurrent or recent hospitalization — Up to 20 percent of people who are hospitalized and up to 50 percent of people in long-term care facilities (eg, nursing homes) carry C. difficile in their feces but many do not have diarrhea or other symptoms. Exposure to these carriers significantly increases a person’s risk of becoming infected.

      ●Older age — The risk of becoming infected with C. difficile is 10 times greater in people who are 65 years or older.

      ●Severe illness — People who have a weakened immune system as a result of an underlying medical condition or a treatment (eg, chemotherapy) are at increased risk of becoming infected with C. difficile, especially during a hospital stay.

      ●Recent infection with C. difficile — People who have been recently infected with C. difficile and treated have an increased risk of becoming infected again soon after stopping the treatment.

  6. Brian March 31, 2014 at 11:06 am #

    You didn’t get c diff from taking abx, you were already infected for some previously unknown amount of time and the abx made a dormant infection become active. Does that sound better?

    Despite my aggressive abx and IBS issues my numerous c diff labs are negative so hopefully they’ll stay that way.

    • 49erBry April 1, 2014 at 12:11 am #

      that’s good hope c-diff stays away.

    • 49erBry April 2, 2014 at 12:21 am #

      btw I have been a germaphobe my whole life and I wash my hands too much, i’m a picky eater so it was odd when I got so many parasites and other things.

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