Now what Lymes/PANS treatment?

[HopeinHIM]

Now what? DS 10 has PANS and Bartinella. We were first treating the Pans only with Dr T and then went to Dr B and he believed it was more Bartinella. He is on Bactrim/amox/zith for 4 months. We did many test and found some Methyl issues we are giving him many supplements as per our DO naturopath Dr Tom Moorescroft. When we finally started the bartinella protocol he stopped raging and became functioning again. Dr Tom added artimisinine for Biofilms and he became even better on those in low dosages. WOW we thought this is it!!!! He can maybe go back to school and function normally again. (Our son has been home with very little schooling since last march) Eyes hurt/ head hurts/ reading and math affected. So really how much can you get done with these children??? BUT in September as I upped the herb he went toxic on me or he herxed really bad. We have been attempting to get him back to base line ever since. Past few weeks he seemed mentally getting less fragile but cognitive skills and memory seemed to be declining actually!!!! Dr Tom pulled all meds and Upped Glutathione and Tox ease (Beyond Balance). Reintroduced anti b's slowly and he was OK but nowhere near where he was when we in July. Then became sad and very fragile again sooooo Dr Tom again removed all meds and started Motrin 3x aday 600mg. That seems to help but he has also had mild fever for the past 8 days even on this high dosages Ibiprobin.. Perhaps all of this is PANS flare???? Overall he says he feels terrible inside and nervous and angry and sad. Looks like he could start raging anytime soon. Just giving him ibiporbin with probiotics and lots of lemon water. Says his head hurts and feels like he is going to blow up. Head ach with all that Motrin I don't get it.??? Trouble times are mornings and nites but during the day he watches TV and can play with a friend as well. NOOOO school!! 4 months of faithful protocol and $$$$$ and sliding back fast!! Today looking for lymphatic massage therapist to work on him for a few months. I am In NJ and yet to find someone. Dr Tom starting new product by Beyond Balance called MC-BFMP. Says it works wonders. I don't know anymore! Thank you all for your amazing knowledge and concern on this site. It is a blessing to many of us!

 

[momslove]

This is soooo hard, isn't it?

 

Wondering, other than Bart, what infections have been targeted in his treatment of PANS?

[BeeRae22]

Dr. M is excellent- I would continue to follow his recommendations. Be sure to update his office frequently though very busy office and I think sometimes things get by them if you don't speak up.

 

Good luck!

[HopeinHIM]

Thanks to both of you! Well Dr T (NJ) diagnosed PANS back in May 2014. He was not sure what exactly from blood work but treated for two months coxsocci (Valtrex). He had high tiders there as well as strep. Had him on Amox. He was 60% improvement. Dr B said Bart(igenx inconclusive) when we took him But the anti B cocktail he chose was like stopping of the floodgates. He has so many Bart symptoms!!! From then on I was treating just the Bart until a few weeks ago the crash followed by low fever and all mental deregulations return except (THANK GOd) the raging. I am going to try a lymphatic drainage massage therapist but even slightly fearful there bc of his seemingly inability to handle toxins. YES this is all finding a needle in a hay stack. Poor kid in bed and watching days of TV. UUHHGG