Off GcMAF - Flair was motivation

[JuliaFaith]

Been posting experiences with GcMAF. My son got a 'cough' which signals a PANS flair. Last time he took 2 weeks of abx with cough and had his tic show up after the cough was gone (about a year ago). This time, he took 2 weeks abx, and stopped, then 9 days later after taking Gcmaf injection, his tic and PANS flaired. Not major but not minor.

 

I stopped gcmaf after that and had dr. appointment soon after. Doctor recommended stopping Gcmaf for now and picking it up again later. I reminded her that his nagalese was .87 two months ago and she said to just stop it completely. My DH is taking the rest of the injections (about 1 months worth since his nagalese is a bit high).

 

Over a week and a half his PANS symptoms are slowing down and he is on Augmentin for 28 days. The unbelievable part is that he has been swimming at least 3 times a week during the flair! He has never been able to exercise during a flair before. His main symptoms have been OCD, some anxiety the first 2 days, and tic in his throat.

 

Just having things change, is really good to see.

 

Oh, and his other MD is now doing nagalese test for herself/husband/some patients to see if more healing can come from it.

 

Keep healing!!!!! This should be the 'forum' montra! :-]

 

 

[sf_mom]

Just wanted to update as well.

 

My friends son started GcMAF shots in September. By the first week in Oct. he seemed much worse. He could not socially integrate, had restricted eating (went from 72 pounds to 64 pounds), wouldn't look anyone in the eye, was extremely tired, compulsively biting the skin on his feet, etc. It was very worrisome to see him in that condition. However, I just saw him this past weekend and he was 80% better! He still had some fatigue after his weekly shot, mood switching when tired but is now 66 pounds and his appetite is back. Amazing turn around.

[rowingmom]

Sounds like a herx from reactivation of his immune system - these infections have a huge impact on immune function. Glad to hear he is improved.

[sf_mom]

I agree, extended herx from reactivation. He is also immune deficient inclusive of IgAs and waiting to see if his subclasses turn around with treatment.

[JuliaFaith]

sf_mom-- We ended up doing ds injections at night because they made him so sleeping and moody. It is supposed to help if they get physical exercise afterwards but it just did not work for us. The moodiness usually came 2 days later which was strange. I wonder if the 2xweek injections might have been better for your friends' son, but soooo good to hear he is showing improvement! Wonder if he has had his CD57 looked at? Thank you for the update. :]

 

Once every so often my son said he felt like his had a 'cold' for about a week and then would feel better. Could not tell from looking at him that he had one. I believe it was his immune system battling some of those two activated viruses that have been hanging around for a few years, one of which has decreased on blood work since he started the treatment.

 

Will be interesting to see what the next year brings.

Edited December 11, 2013 by juliafaith