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  1. Someone was very kind enough to give me some names for ivig advocates from this forum, thank-you, however I have not heard back from them after emailing (they may be booked, busy). Thought I'd ask and see what other names might be suggested. I have read some on the jennifer jaff center but they don't seem to do advocacy just give information. Right now the diagnosis is clinical encephalitis with primary auto-immunity, along with secondary immunodeficiency, POTS, IC, etc; severe psychiatric problems that are resistant to both medication and ECT. We have not received results back from LP yet, I think the results will be helpful if we can identify which auto-immune disease it is. We have definitive proof of neuro-inflammation. However, I'm getting sicker and sicker, ocd and psych problems including depression are getting worse and worse. I don't have it in me to put up a fight. Insurance has denied the first appeal very quickly. Said they will only cover for: ITP and PID. We have no other path to take, literally tried everything except this, and we trust Dr. C....... We can show that I've tried everything else possible, it's been over 10 years of going to mayo, shands, surgeries, many psychiatrists, alternative therapies, you name it - I've done it.......... don't know if this will hold any weight, but I have no other options. Thanks.
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