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Old 04-07-2011, 02:58 AM   #1
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Location: Houston, TX, USA
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katyhilton HB User
Immunogobulen IV therapy for Neurological issues in CFIDS?

Hi. I am trying to find info about this treament my doc is telling me is going to help my neurological problems. First, my CFIDS symptoms are not typical. They are all neurological. It was initially thought I had encephalitis. I went to three neurologists and confused all of them. My doctor says I have post-viral cfids (ebv reactivation) and that the ebv attacked my neuro system and is comfy there... Which she has seen but not often. She said it can really attack any part of you... It's just most commonly the lymphatic system. This drives me crazy because I can't find any literature on it or anything. I like to educate myself. It's hard enough with all the conflicting info and confusion surrounding CFIDS... You have to choose sides. I am going with what my doc believes even though it is different. I think she is ahead of the game. Anyway - she is pushing my insurance company to pay for immunoglobulen IV therapy. She said it helps in cases of CFIDS like mine - where it's all neurological. It does not help typical CFIDS. She has me so pumped up - telling me how much I will improve. But I want to hear about someone else improving from this. Google... Nothing. My symptoms are - constant fatigue (I know, duh), extreme weakness in my face, mostly my eyes (this is constant) I cannot keep them open naturally without having them poop out in 10 minutes. The rest of my face sags, hard time chewing and swallowing, slurred speech or inability to talk at all. Clumsy, I appear intoxicated sometimes. I walk like I drank a whole bottle of Jack.. I get confused.... Personality changes. Out of character behavior (like I cuss casually). Numb face. One seizure episode. Hyper-reflexia a few times and some hallucinations and AWFUL photophobia. Light KILLS me -especially Sun or TV or Computer. Anxiety. You get the idea... So anyone know anything about this? I am also taking glutathione ATP shots (they cleared all my rash, hair grew back and my finger nails are pretty) :P I really really want to be able to keep my eyes open without pain... And second I want to be able to look at my computer and TV and go outside (I feel like a vampire). Thanks for any input!

 
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