IVIG Infusion

19 Feb

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Had my monthly IVIG infusion last Wednesday. Most Lyme’s take IVIG (human plasma) to boost their immune to help with Lyme but I’m taking mine both for Lyme but mostly for my primary immunodeficiency (I was born with little to no immune and have it for life). Most Lyme’s also use Sub-Q IVIG which is different than what I use. There are many different brands and ways to infuse IVIG but I use Gammagard 10% 30g/300ml dose infused over 4 hours.

I didn’t have a chance to post about this last infusion until today because I haven’t been well. I had a bit of bad reaction again and slight brain swelling, inflammation. I’m doing a Lyme diet and anti-inflammatory diet plus taking anti-inflam medication and supplements but they don’t help me. For some reason doctors think these anti-inflammation things are miracles and can help with the pain but they don’t. Well at least in my case they don’t and doctors seem to not believe me that I feel no difference, it’s frustrating.

I was able to avoid the ER but that’s only because I hate going there and because I have every med they give me at the ER at home. I did all the precautions and pre-meds before the infusion and even added an extra 500ml saline after. It just seems to hit me every 5-6 infusions. Very painful. It makes you not want to continue with the infusions but I have to do it because I don’t want to end up on isolation getting sick from anyone that comes near me. I may be upping my dose soon or switching to 4 infusions per month.

I have a good nurse and he is a retired nurse from a hospital so he’s seen it all. He told me to tell everyone getting IVIG infusions to “hyper hydrate, that’s very important”. He recommends a half-gallon of water before the infusion or keep drinking just plain water until you cannot drink anymore. But you might want to add in some electrolytes like Gatorade or smart water..etc.

Hope you all have a much better week. Stay strong and do your best to carry on and don’t let your illness define who you are.

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