Gammagard IVIG Infusion 

13 Mar

IVIG Infusion 

I’m not doing so good, I’m awake in bed with the chills, headache and feel worse than usual. Took extra pain meds, migraine meds and they aren’t touching the pain. If you have been a reader for a long time you know I have hundreds of symptoms from different chronic illnesses but the IVIG usually gives me a bad reaction or aseptic meningitis. It’s possible I may wake up today with meningitis, usually comes days after the infusion. It’s very painful amd hard to do anything so I’m writing this now. I have severe muscle, bone, nerve, joint pain..etc and still haven’t been able to get in to get ketamine coma infusions. 

I don’t want to take any more pain meds since they are not helping. I took an Epsom bath but could barely get in or out. Drinking a lot of water to hyper hydrate as per my nurse. Took 1500mg of Curcumin as per my LLMD but it’s not helping. Just want to share my experience for those new to IVIG or those who know what I mean. My dosage is above in the picture and infused in 4 hours once a month with a 250ml saline bag. Don’t let this scare you though these are common side effect symptoms but the meningitis is not. My immune is slowly going up a few numbers so it is helping. I’ve tried other things to raise my immune but they don’t help. 

For those who don’t know I was born with little or no immune called Primary Immunodeficiency (PID). When I was 6-7 years old I was bitten by 3 ticks embedded in my skin. My low immune allowed the Lyme and other tick borne disease to invade my body and thrive. I was severely sick right after being bit for 3-4 weeks or longer than the flu but had flu like symptoms. I was re-infected again in 1999 when a few ticks but me in my backyard while playing with my dog. My dog got Lyme the same day I did and she passed away 7 years later. I had a rare case of “elderly pneumonia” but I was a teen and I nearly died from it. At the time they thought I had AIDS. But later found nothing to diagnose me with. 

I have a great retired ER nurse who comes over to do the infusions at my house. He is very knowledgable and friendly. I use pre-meds before the infusion which I have listed in a previous post if you need help. Without them I had severe migraines and aseptic meningitis more frequently. The last few infusions make me very drowsy and I couldn’t stay awake. I went to bed and slept sound for 20 hours and woke up not knowing where I was. I need to get some rest but wanted to update you. I hope you all are finding better days, stay strong we can do this!! 


2 Responses to “Gammagard IVIG Infusion ”

  1. Brian March 13, 2015 at 10:53 am #

    Don’t know why this is happening, Bry, my Sub Q infusions have never made me feel bad, only a little better.

    Regarding your infections, the only advice I could possibly give you is to treat babesia before lyme, that is what LLMDs say.

    I hope you do not have a worsening inflammatory response.

  2. Brenda Hardison March 13, 2015 at 11:08 am #

    I have just learned about the Cowden Support Program for Lyme’s Disease, it clears it out of your body and possibly helps with other illnesses. I know you have been through way too much for one person, but if you can and have not yet heard of this, please look into it. You go by a program and it takes a year. I am sorry to hear how badly you are suffering, I have weeks it hits me very hard as I have suffered different illnesses before a tick took me right down. Life is not fair, that I have learned. Wishing you the best.

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