Tuesday, February 10, 2015

I Am At Peace

For the past three years I have done IVIG infusions monthly, for the past three years I have had aseptic meningitis after each treatment.  For about two and a half years none of the doctors I saw thought that any of my symptoms were related to the treatments, though I adamantly told them over and over none of the symptoms started until after treatment started.

I began to research IVIV treatment, I read everything I could find and occasionally the term aseptic meningitis popped up, but my doctors kept looking outside the range of treatment side effects.  I saw and ENT, an audiologist, had an MRI of my sinus and brain , there were discussions of seeing a gastro, my eyes were checked........still each time, the doctors would tell me they really didn't know that much about IVIG.

Finally about a year ago, one of the hematologists suggested I had serum sickness from the treatment and he suggested we reduce the amount of IVIG I was getting.  It helped, but didn't make the horrible symptoms go away.  Then about six months ago, a friend of a friend put me in touch with Primary Immune Deficiency Foundation.  A light bulb went off, an Immunologist  was recommended, I saw him and he informed me that indeed I was dealing with aseptic meningitis because of the treatments.
I followed his suggestions, adding fluids with the infusions, slowing the drip again, changing the brand.......and still I deal with the meningitis.

This weekend after much thought, many prayers, and three years of misery I have made the decision to stop the IVIG.  I am that five percent whose tolerance to IVIG  is just not in the cards.  I have CVID, common variable immune deficiency......a blood disorder if you will, very little immunity to bacterial infections, viral infections and I have a chronic lung infection.   I have dealt with lung infections for most of my adult life and sinus infections too, a 24 hour bug can last for days in my system.    IVIG is considered the best treatment for primary immune efficiency, the next best thing will be what I have done for several years, antibiotic rotation, and something I didn't always do, common sense......staying out of crowds during flu season, seeing a doctor at the first sign of infection.

I understand this disease now, before I just thought if I got bronchitis it would go away eventually,that a cold was something I could "wear" down.........now I know all of those things have to be treated quickly.  This is a decision that was not made without  a great deal of thought and who knows what lies down the road.  But for me, my quality of life had gone down hill rapidly the past three years and for me the symptoms of meningitis robbed me of living in a way the infections never have.   I know that IVIG can be miraculous for many, but for those like me, that five percent......the side effects take over your life.    So this has been the biggest transformation I have made, since beginning those treatments three years ago.  Only time will tell the rest of my story, but today for the first time in three years......I am at peace.


  1. Hugs Jilda. Hard decision and only you can decide. May you be tranquil and at peace with your decision. The three years have been long and not at all easy. Hope the aseptic meningitis will become only a memory from your treatments. A new day for you.

  2. Jilda, I think you need to do whatever it is that brings you peace... I agree if the side effects are worse than I would stop taking it too.

    There are very few drugs that I can take that do not cause horrible side effects, I am always one of them that gets the side effect that only 2-5% of the population get... I am going more and more natural now, it is the only way I actually have a good quality of life.

    Good luck, I know you will pay attention and do what you need to do xox

  3. I'm sure you have made the right decision for you. I really think we know our bodies better in some situations than doctors do. Quality of life becomes so very important. Sending hugs and prayers as you make this transition.

  4. Being in pain and misery for three years is not a fun way to live. I hope that you'll have a better quality of life. Being away from crows is manageable.
    I'm sure you made the right decision. Your system is also probably worn down from all the treatments.

    Wishing you peace and a better quality of life.

  5. I can see that you have investigated the problem thoroughly and given a lot of thought to the possibilities. It seems to be the best decision for you and I applaud you for it.

  6. These decisions are never easy, but I can tell you know what you're doing and have certainly looked at every nook and cranny for help, treatment and advice. I know it will be a good choice for you. Prayers always!