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I'm not sure if this is going to make much sense right now because I'm in a pandas flare, but I just had ivig 12 days ago and I have only noticed that my symptoms have gotten worse a few days after my ivig and still just as bad 12 days later , I've been sick for so long and I just need some positive feedback if anybody has any experience with ivig. I'm 27 so I don't know if that makes a difference in time it takes to work. Thanks

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When my son had his first ivig there was no after flare. However after his second ivig he had what is referred to as a turning back of the pages. That flare lasted a pretty long time and I began to doubt whether he should have had the second ivig. It finally ended and he was better off than he had been prior to the second treatment. Hang in there!

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Were infections ruled out and/or treated prior to IVIg? Specifically, lyme (& co-infections), mycoplasma (and of course strep)?

 

I've been reading and reading the anecdotes on this forum. From those anecdotes, it sounds like there can be some sort of infection(s) lurking where the IVIg helps improve the immune response such that there can be a herx as the infection is finally being killed off....? Would love to hear more experiences. I might suspect possible infections that medicine isn't even aware of yet.

 

Dave do you have any headaches/nausea too, or are you referring to neuropsychiatric symptoms (OCD, etc)?

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No infection that I am aware of , it's usually only if I get a sinus infection or strep that I get this. But after ivig I did get nausea and a headache for about 3 days after then it went away. As crazy as it sounds I would love all of these symptoms to be from the ivig irritating things because I guess that means it's working. And yes I do have a increase in OCD and some extremely weird thoughts going on since ivig. The problem is I already can't think rationally as it is because I'm in a flare and it effects my brain in that way. But the only other thing I'm taking is clyndomycn and I have random poking sensations all around my body on and off and I'm extremely anxious . So i don't know if that's a antibiotic allergic reaction or anxiety from the ivig.

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My son did not tolerate IVIG because symptoms got worse. He was also pre-treated before having IVIG. However, my son had a low IgA and people with low IgA's have a hard time tolerating IVIG. There are different brands that contain little or none of the IgA.

 

The hospital that my son was treated at only used one brand and nothing differently could be ordered. His doctor could not order anything different because of the rules and regulations of a teaching hospital.

 

My son had to do plasma exchange because his body could not tolerate IVIG. Hope your doctor is able to get it figured out for you soon.

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http://www.balancingbrainchemistry.co.uk/peter-smith/35/MTHFR-Gene-Mutation-and-Treatment-Resistant-Depression.html

 

 

 

I don't know if this article would help or not but brain inflammation is mentioned. Do you take L-Methylfolate? If not you might ask you doctor about this supplement. My son did the 23 and me testing a few years back. When pain becomes overwhelming depression can creep in and you don't want that to happen. I don't know if IVIG would deplete any of your body's nutrients but PEX was hard on my son and I had to use additional supplements to help support his body when he was going through treatment. Have you been checked for B, iron, D, and magnesium levels? Just wondering if your treatment has depleted some things in our body and maybe this is why you are feeling so bad. I would be happy to share a list of supplements if you think it would be helpful.

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Nothing really happens when I take ibuprofen and I have to be careful with things I take. I get flares from infections but I also will get them from drugs to, prednisone put me in this current flare, calozapam is also equivalent to me having a full blown strep infection, I just can't take those drugs. But the ivig really made all my symptoms worse and there's no denying depression at this point , I just hope this starts to turn around soon

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