ivig helping

[jaco]

Hi all..I just wanted to send out hope and let everyone know that i've just had my third ivig and things are definitely improving!! I get the lowdose ivig every three weeks and a dose of steroids (iv) before. The steroids REALLY help!! I am feeling so much better.

i go back and think about it and i completely forgot i used to have nightmares every night. Just little things like that I am noticing that are getting completely better. I'm already thinking about clases for next semester which was something I could not do, the future used to make me so anxious. Also, I used to blame myself and not be able to understand that this was an actual sickness. I am going out every day, not having the paranoia i used to. It's amazing. Also the depression has lifted, which i partly credit to me getting back into exercising but definitely also the ivig because i was exercising before. So i just wanted to tell everyone that the IVIG really is working. It might take a while... because i believe i started back in march? but i believe that it will work for all of you!! Next i am getting my tonsils out and more rounds of IVIG until october.

 

Also the last nurse I had (med-pro has amazing nurses!! the two i have had have been so sweet) discovered i had an irregular heart beat so i went to the cardiologist ( Dr. Haugen- one of the nicest doctors i have ever met, taught me a lot about the heart) that Dr. L recommends and he said its a premature ventrichular heartbeat (if anyone has seen no strings attached it's what natalie portman says to ashton kutcher ) , it skips a beat. The sonogram shows that it's not damaged so no rheumatic fever. has anyone else had this. I don't think i have had this since i was little because i have had an ekg/ecg before.

 

oh! the other interesting thing to note is each time i have ivig i actually find myself more sensitive to wheat, and my hashimoto's tsh has gotten higher meaning i need more medicine which is the opposite of what i would expect, you would think that the autoimmune factor would decrease. Just something interesting. But not really a problem.

 

So i hope other people are having success with ivig and everyone has a great memorial day weekend!!!

[colleendonny]

Happy things seem to be going well for you!!

[ptcgirl]

YAY! So glad to hear the update. My daughter has an irregular heartbeat too. It was discovered at the same time that she got PANDAS. It always made me wonder. At the time, the drs were concerned with Rheumatic Fever, but dismissed it. The cardiologist says it is an innocent heart murmur. I find it odd that it appeared out of no where just after the strep that caused the pandas in the first place.....

[PowPow]

This is great, great news, Jaco! The steroids are so helpful to my child, too!

Maybe ( i am totally extrapolating here) the hashimoto's will eventually calm down. Maybe the IVIG is stirring up your immune system a little bit and your thyroid is reacting. My daughter had a negative immune response (hemolytic anemia) to IVIG, but in the end I think it was very helpful.

This is such happy news.

Out of curiousity, are you getting high doses of IV steroids?

[Kimflow]

I am thrilled for you too, Jaco. It is nice to be happy!

 

Interesting what you put about the wheat and your thyroid.