GcMAF Update

[JuliaFaith]

Have not been able to get on this forum much lately, but have always appreciated such 'smart', talented, incredible, caring, and loving moms! Thank you for all that you contribute on here!

 

Regarding the GcMAF-- The first weeks were difficult in terms of OCD intrusive thoughts, but it has mellowed substantially since the beginning. We did stay at the .05mL 2x/week dosage for the entire time so son could do school work. We switched to night-time injections because it made him sleepy. Some people do morning injections because it helps them sleep better at night.

 

We just upped the dosage to .07mL 2x/week this last Wed. since school is out and have not noticed any increase in PANS symptoms. His initial symptoms before starting this were flu-like symptoms. Dr. said not to worry about increasing dosage as they are finding that slow is just as effective. We decided to increase since I had already frozen the remaining GcMAF in syringes at the .07mL dosage, since it had surpassed its' 2-months in the refrigerator. We could easily get 4 months or more of treatment by doing this so not as expensive as I originally thought.

 

Just visited dr. who does ART testing and looks at blood work. She said he tested 'very healthy on the usual things that are checked every visit' (bacteria/parasites/lyme etc.). Which was great news! Had only happened once last summer. This was also good to hear since son had been thru a flu a few weeks ago with no problems (even had 102 fever which we had not seen in 3 yrs!). Still continuing on kidney tincture because of blood work and lympocytes are still high (been like that for 3 yrs.). Also, still ART testing positive for Claritin-12 hr. so continuing that along with 'Sage Memories' and neurofeedback.

 

At this point, I am not sure if it is the GcMAF or the Valcyte, or both, are helping. We were at about the same place last year with Valcyte when son began feeling better too (lasted 6 wks.). He did have a rash on elbows that went away and then on feet that went away so we are suspecting some heavy dye-off. Son says he is feeling better and that his symptoms are 'PANS' related in his brain (light OCD, thinking) and some muscle aches and that is it! Now to make sure we do not have a repeat of last summer (i.e., boy-15 sick for 3 yrs needing to make up for lost time!--you have an idea. . Thyroid meds were reduced 25%.

 

Did re-do the Nagalese testing to see where that is, but have not received results back just yet (takes about 6 weeks). I am also curious to get back blood work on the HHV-6 virus to see if that has gone down at all.

 

Best wishes for continued healing. :-)

Edited June 21, 2013 by JuliaFaith

[rowingmom]

It's all about getting the immune system back and running isn't it? Thanks for the update. Glad things are going well.