Medical Update July 2022
Thanks to everyone who has been supporting me recently. I wanted to give a brief medical update in post form so it'll stay up.
I have been very crashed for over 4 weeks following a bad histamine reaction to IVIG (I use IVIG for Behcet's neurological issues and am hoping it may also help my MECFS. This has caused me very bad histamine and mast cell sensitivity, in particular bad hives, limiting my diet to a half dozen ingredients.
Due to the inability to give more IVIG until the reaction calmed at least a little my migraines returned as well as other Behcets symptoms like mouth ulcers and joint pain. Thankfully I have not had a severe flare of any focal neurological issues.
As of a week ago, I received my first dose of Xolair which has helped somewhat. I am also high dose h1 and h2 antihistamines, ketotifen, Singulair, and prednisone. With this in place, I received a half dose of IVIG 2 days ago run extremely slowly with IV Benadryl that has helped my migraines somewhat. However, it is not a full therapeutic dose so I am still not close to my usual post-IVIG level.
My veins are close to giving out and I need fluids to recover from this crash as well as the ability to be accessed for long periods and/or over multiple days to receive IVIG without triggering a reaction. Therefore I am scheduled for a port surgery on the 5th of August. This is risky as it means going into hospital when I am already very crashed but it is our best option.
Thank you to everyone who has been following my occasional story updates and wishing me well. I will be continuing to stay off social media until I have my port in and am more recovered, and if I am unable to recover my husband or father will access my account to update.
I am extremely privileged to be receiving this care, despite my current poor state. Please remember that the people most affected by Myalgic Encephalomyelitis are the least visible. Fight to educate doctors and politicians about Very Severe ME so that all patients can receive the in-home and hospital care they need to minimize preventable suffering and make life as bearable as possible with this level of illness.
