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From what I've researched, and have been told from other people who have this disease, this is the effect of the antibodies' attack.
Allow me to give an example that may or may not work and may or may not be accurate! :D
We have had an issue with ants in our bathroom. We had no idea where they were coming from. Yesterday I noticed a cluster of them up at the top of the shower by the wall. Dwayne "killed all of them". About an hour later our bathroom was SWARMED with flying ants!! It was like they called in for reinforcements!! They were no longer contained to that one little cluster area, they were everywhere! (I was worried they might be termites, but a google search tells me otherwise.)
I think these antibodies are sort of like that. They were in my brain doing misdeeds. I launched an attack against them, pushing them back, maybe killing a few of them off. But when the IV attack was pulled back, those buggers SWARMED. It's my understanding the goal of treatment was to try to knock them out without collateral damage.
Think about a war. You send troops in to attack an enemy. Hopefully your troops are stronger than your foe and the enemy sustains more casualties than your forces do. But there are losses on both sides so you pull back and regroup. Then you attack again. You repeat that process until your enemy is defeated.
With the ants we will go in with some bigger "ammo" than just squashing what we can see in the hopes we can kill them all off. We'll also treat outside since they have to be coming from somewhere. The goal would be to prevent them from coming back-ever.
The difference in what is going on in my body, is that my body is MAKING these antibodies. The steroids attack the "factory" (the immune system) but the reason my immune system is launching an attack against my own brain is unknown. So the factory takes a hit (not too hard because I need that immune factory to stay alive) but once that hit is pulled back, the antibody factory gets back to work. From what I'm experiencing it works even harder than before. So I end up with a flood of "ants" in my brain. The brain controls the whole body so I have pain and wild emotions and all kinds of cognitive disfunction.
It's WAY more complicated than that, but it seems like a good picture of what's going on based on what I understand.
Just like no one has the perfect answer in a war situation, I don't think there is a perfect answer for this situation. It's a reminder that I (we) live in a fallen world, an imperfect world. True peace will not come in this lifetime. We (I) just have to do the best we (I) can with what we (I) have. So I breathe in and breathe out and I move forward looking for ways to kill off ants.
Thanks for stopping in and sticking around.
:D
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