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Does Dr J do IVIG

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Posted 5/12/2022 3:17 PM (GMT 0)
After reading up on IVIG, I feel like this could be beneficial in my treatment. I believe I fit in the category of PANDAS/PANS and autoimmune encephalitis due to the nature of my symptoms. IVIG is also beneficial for pots which has been an extremely severe symptom. Do you think ivig would be beneficial for me> Does Dr J do it or would I have to go to another physician. Any ivig stories if it works or doesn't. After 14 months of treatment, my neuropsychiatric symptoms have barely improved so I think this would be beneficial.
Posted 5/12/2022 3:42 PM (GMT 0)
Yea i've found it very benefical. POTs probably responds the best to it. My guess is Dr J does not do this, one of those drs who, rightly or wrongly, seems focused solely on the infection and not the immune system.

Where are you located?
Posted 5/12/2022 3:47 PM (GMT 0)
Im located in Maryland, usa. Does insurance cover your ivig? What diagnoses did you have for insurance to approve it? What do the costs look like with and without insurance. Im 21 trying to get my life back after it went all downhill in 1 night. Maybe ivig would help
Posted 5/12/2022 3:56 PM (GMT 0)
email me
Posted 5/12/2022 10:06 PM (GMT 0)
As far as insurance, I have found that a tough sell. Initially, the rheumotologist I see for Sjogrens Syndrome said it would be no problem getting IVIG for the neuropathy it is causing. That changed the day before it was supposed to start, and appeals have been being made since then.

While I wait for something to happen, I've noticed my feet feeling worse. I was diagnosed with large fiber neuropathy, but believe there is also small fiber at play. There are specific requirements needed by insurance, which I'm sure dcd is explaining in emails. I think the insurance companies are resistant to approving because of the high cost.
Posted 5/13/2022 3:22 PM (GMT 0)
Thank you all for the replies! Anyone else with IVIG experiences? dcd helped me out a ton
Posted 5/13/2022 6:00 PM (GMT 0)
In my experience Dr J does not do ivig. Dcd probably hooked up with the famous ivig guy on the east coast
Posted 5/13/2022 6:02 PM (GMT 0)
Dr. J does not do IVIG, in fact he told me to stop IVIG when I started treatment with him
Posted 5/13/2022 9:34 PM (GMT 0)
Itc1225, did ivig help you? Do you think it would've helped you while on antibiotics?
Posted 5/13/2022 10:24 PM (GMT 0)

bro123 said...
Itc1225, did ivig help you? Do you think it would've helped you while on antibiotics?

IVIG was a temporary help for me, I compare it to disulfiram as they both were band aid treatments for me that only helped while taking them and then when I stopped I lost all the progress I had gained and wasted time.

I don’t think it would make a major difference during my antibiotic treatment
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