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I just wanted to update you all that I had a stress test. Pvc's went away when I exercised but then came back as soon I stopped. Technically that's what they wanted and I can get y T and A but now they want a heart MRI since they came back so quickly. I wonder if it could also be since my body is under stress from gettig ivig every three weeks, I mean it is alot to handle and put the body under, constantly putting new antibodies in. Or maybe this is my Lyme denial Thank you all for your input!!!!

Hi. I'm 18 I was diagnosed with PANS/PANDAS after coming home from college with debilitating anxiety, hallucinating, paranoia...the works. Some of the Physical symptomns I've had ( I still hate seperating the two because we know they all originate from an infectious cause) are photosensitivity, joint pain, headaches, eating disorder. I've had many western blots and an IGeneX lab done. One band came back undetermined. I forget which one...I'll check and post back. Well the first thing to clear up from the ivigs I get were my joint pain...also the neurological amxiety and ocd symptomns!!! Yay! However one of my nurses caught an irregular heart beat Went to a cardiologist, he said pvc's. I got a holter monitor and it showed a significant amount that they need arrhythmia doc and stress test to clear me before surgery on Friday. I had a clear ECG back in November. Does this mean( if i have it)the Lyme is affecting my heart? Does this sound like Lyme? At the time I'm not seeing an llmd. Just a very prominent pandas doc who does search for lyme. She has not yet heard this info but I'm sure ahe'll be interested. Honestly how do you even ever know if you have Lyme?! Is it a clinical diagnosis like PANS? I just am so freaked out. I thought I was almost done! I feel loads better!! But now with this heart stuff, I don't know what to think. So any help would be much appreciated. Thank you so Much!!!

Godsgift- First off I completely understand where you're coming from with the " will this get better" question and like the people above me have said, no one quite knows. But I can tell you I am 90% better. The 10% left are remaining questions about where the infection is, and some obsessive anxiety food stuff, and just general not quite exactly where I should be...i'm sure my mom could explain it better. My story is pretty long, feel free to pm me..but I did not see improvement until the ivig courses...low dose every three weeks. As far as puberty goes, we're fairly certain I got the recurrent strep infections when I was 15-16 and it was set off by another (unrelated to strep) infection right around when I turned 17 and then sudden onset first showed up in anorexia and then a general detoreation. (I'm almost 19 now) But I am sooo my better now, it just feels so great to say it, I can hardly believe it sometimes. The journal thing is a really good point. I went into see my psychiatrist and she asked me about the night rituals and nightmares and I was like wow I had totally forgotten about that. She said its common, as soon as you stop having a symtpomn your brain kindly forgets it was ever a part of your life. It will get better, hang in there. Your kid will have the lfe you have always dreamed for him, this is the rough patch but it will make him be able to get through anything. I really believe it.. Hugs to you and your son!!!

I'm 18 almost 19 and get my IVIG from Dr L. She treats me just as she would a pediatric patient. I too had to leave college last year but as things are improving (low dose ivig every three weeks next week will be 5th) I'm looking into classes for the fall!!!

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!!!

i just wanted to say i love felicia!!

Thank ALL of you for your kind words. It is your support, my doctos, my family that help get me through this. And i really feel for the younger kids because I feel fortunate that I can understand things like autoimmune disease and antibodies etc, but I can only imagine how you would explain that to younger children. Yes I will work on this when I get older, when I think about how much of a differnce all these amazing dr.s and psychiatrists and therapists have had in our lives I want to do the same

IVIG thursday at Dr. Latimers office by Medpro on the 4th My strep was Fall/Winter of 2009-2010 Anxiety onset was February 2012 (anorexia, school preformance decrease, generalized anxiety, obsessions) Became Unmanageable in August ( that's when the regression began, i could no longer take care of myself, keep myself healthy etc, constant crying/worrying/fear) September left college, depersonalization, derealization, October (extreme fear, waking up in the middle of the middle of the night, not recognizing mom, night terrors, tics, "what if...", i've gotta get away, handwriting deterioration in episodes, and more, i dont even remember everything it's hard to remember it feels like a different lifetime, each episode feels like a different person. thats probably part of the depersonalization its hard to remember that i am who i am and i was who i was yesterday if that makes sense?

hi i just got ivig im 18 had to leave college. i've prolly had PANDAS since feb of 2012 but first got the strep bout in 2010 with maybe four or five recurrent infections. I am writing this because all my symtpoms are flaring up again and I am doing IVIG low dose for six months ever three weeks as I have bcbs and the only way its being covered is by my Ig deficiency. I haven't had this bad of a flare in so long I forgot what it was like. i HATE the sun it makes me feel pressured to do things, i think people are constantly tlaking about me/thinking about me, don't wana shower/change my clothes. was anorexic my senior year of high school. Somethings have stayed the same throughout having flares or not having flares just the pandas "baseline" i guess you could say such as spotlesss room, rituals, many other things i don't even notice. i just wanted to ask how long people saw flares after IVIG, dr. l prepared me and my mom for this, but didn' really say how long it lasted and if it happened after each time. Also at the time of the infusion i had a chloeriform movement or a tic?, i almost ripped my iv out! I just wanted to say for anyone that has that i had to up the benadryl and ended up taking a benzodiazapan. Pandas is literally h*** on earth. I have never felt more alone in my life. I basiacally have stopped talking to my friends because they don't get it. I mean how can anyone get it unless you go hrough it right? I just wanted to say to all you parents out there you make the world a better place for your kids because without my mom I don't know what I would do, i would probably still be rocking back and forth in my dorm room not eating, exercising like a maniac, afraid people were watching me and feeling so depersonalized and not real it was so scary. also if anyone wants to send me a message feel free to because i think i could answer any questions well. and also i know i may seem calm right now speaking but just last night when my mom forced me into the shower after rollling around in the dirt with my dog i was having a rage and throwing bottles of shampoo and yeah well of course you all know what that is like. okay well my love and blessings to your family. oh yeah and i have a therapist i reccomend it because it helps me becuase at first i didn't believe this was a real disease i thought i was doing this to myself but now i finally believe that this hapened to me not that it is my fault because of her. and really i know this message may make me sound not very educated but i was always an ap student i am just having trouble with formin sentences. love and blessings