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Everything posted by socalmom

  1. Thanks, I do think the gut is an issue with all these kids, there's a second brain in there and it's clearly impacted. As for controlling inflammation I try with diet what else is there? We did IVIG, DS lost all OCD , The tics are a killer, it's heartbreaking to look at. I think detoxing is an issue, with him as well as me. Any suggestions for adding to detox protocol? We already do MILA, PGX, and magnesium baths.
  2. Hi, Can anyone with a child dx'd with Lyme,PANS and motor tics share their story or tell me how long in treatment before tics subsided? I've been treating DS since March. Thanks
  3. Interesting rowingmom, how did you come to understand Bart was the reason for tics? my son has been dx'd for Bart too and he's PANS as well.
  4. we have been on Alinia for 2 months now w/ Azith , tics aren't going away but decrease. It's a good drug I think. I am not sure if we have the " right" combo but when our LLMD gets back from Lyme confrence in San Diego this weekend I will ask about this.
  5. HI Lily, We do the 11 strain powder. it can be purchased directly through the manufacturers web site. hope this helps.
  6. have you tested for mold issues? I ask because mold causes confusion/brain fog. Isn't Prozac a SSRI? i read that' s bad for PANDAS kids. Sorry I can't help more, I just thought to say these things incase you didn't know about them.
  7. Thanks Familyof5, I may PM you for more info. I brought 3 pieces of all wood furniture with me, hope it wasn't at my peril. I ditched all linens and pillows and beds. The house I moved from tested as a 1 on ERMI yet, it had 3 toxic molds known to be immune depressors! Aspergillus, Cladosporidium, and another. only 3 spores of Stachys. I was told not to make decisions on belongings unless Stachybotrys is involved. It's all so confusing, and it all so awful when a scared child is involved. My new place had air sample and visual inspection by mold guy my LLMD recommended and has no water damage history. Let's hope we're ok.
  8. Thanks S&S, we are on the Cholestyrine and it supposed to bind lyme toxins as well as mold but i really don't see improvement. I think Bartonella, babesia and possibly metals may be our real issue. I am just so F@&$ tired! I dumped my Sofa and fridge and i moved with a freaked out kid who's life was already ruined by lyme and now mold.
  9. This thread is starting to read like a debate. We are mothers of very sick children doing the BEST we can, we come Here for support and ideas/ help. I truly Hope S&S gets / figures out how to best help her daughter, hugs to her because I know how bad it can be only to be told by some flippant more experienced mother " you're panicking, relax. It's scary and so few Dr's can help.
  10. All this plus my son is really freaked out right now.
  11. Tough question indeed! We are too sick to chance it. I will be abandoning thousands of dollars worth of "stuff" today. It's only wood and metal. Health is far more Important. I spoke to Environmental Dr and she said to leave it behind or risk " taking my problem with me" *sigh* like I needed 1 more problem..... Now I understand why some Lyme patients are broke.
  12. Sorry for typos, i am on the floor typing on an iPhone.
  13. So it's the 11th hour and as i sit on the wood floor in the middle of my new "safe "unfurnished condo I question what I can take with me. My "mold guy" referred by my LLMD says my New apt is safe as he did a visual inspection and this place has no history of water damage and he did 4 air samples. BUT my old house had 3 toxic molds, when i showed him the ERMI report , he said i could take my Sofa as it was only 1 yr old. and can be hepa vac'd and wipe wood furniture with vinegar and dry. i was happy UNTIL i read Dr Thrashers web site and realized my Sofa may have mycotoxins?' Now I question Everything, including my LLMD who reccomended him and knows we are so sick from mold! So..... Question is ; is it safe to take my stuff with me??! I am literally losing my mind.
  14. Thanks, I ended up finding it via another web site. I am expecting my Thieves oil and cold diffuser soon! It is also listed as an immune booster (via Amy Derksens web site)so extra added benifit!
  15. This web site looks like it advocates bleach for mold removal, something I know does not work.
  16. I have not used this or know anyone who has, I'm just on a quest to make my new living quarters as safe as possible too. It sounded non toxic and interesting.
  17. HI, Familyof5, I agree with you, when I lived in France our house had hot water heated floors, it's much better. I am moving into a second story condo (between1 st and 3rd stories)to try to avoid using heat/air, but i still wonder if it's gonna be a problem.
  18. What about high ozone blasting? at levels where humans cannot be in the room of course. http://www.envirodetectives.com/ozone_blasting.htm
  19. Alinia is working wonders, saw huge change in a lot of things after starting this. Thank you SFmom. Sorry for turning it into a " lyme post' on a PANS board.
  20. SFmom, DS did a Metamatrix test ,only he was on antibiotics and I couldn't get a reading on the yeast/fungi results, but got some great info none the less! DS has a parasite and babesia. Didn't realize Babesia could cause nausea! (this was never explained by my last Dr. who did the test!) He did RBC I will look to see if it's low, it was never brought to my attention, my new LLMD said he has babesia and is treating as such. I am so overwhelmed with my lyme and mold issues I struggle to keep track of things. 1tiredmama, love the name btw, I hope DS is doing better and has regained since losing weight. The only "gut work" I have done on DS is a stool test and removing gluten and dairy. LLM, he's Neg. for celiacs. that was the first thing his old pediatrician told me to rule out as it sometimes causes tics I heard. Let me know how the digestive enzymes work, sounds promising. dcmom, DS does have OCD, and worries about vomiting so I always wonder what's " fact from fiction" so to speak, but that's good you put that out there as I take everything into consideration.
  21. Hi Julia, could I PM you for the name of this machine?
  22. Thanks LLM, Such timely information for me. My SIL in Brussels is a big fan of this stuff, it's even been said to ward of flu. (can't remember which ones i read) BTW- I recently put my own mixture of oils(Eucalyptus,lemon,rosemary, and lavender) in washing machine, not sure if it kills mold but made laundry room smell nice.
  23. Magnesium deficiency can also be a source of muscle twitching, or spasms.
  24. DS 5 has " gut issues" and suffers from constant nausea. Any tips or ideas how to help?
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