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mama4

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mama4 last won the day on May 4 2017

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  1. Does this seem like a legitimate test for Glyphosate? https://detoxproject.org/glyphosate-testing-test-yourself/?utm_source=newsletter&utm_medium=email&utm_campaign=test_yourself_for_glyphosate_and_join_the_first_ever_glyphosate_biobank&utm_term=2017-08-09
  2. Yes, I read your posts and they were very informative, thank you! It all kind of makes sense and I think it might be worth a try. So hard to get a teen to not eat processed foods...I am so hesitant to try almost any supplements as DS has flared with Fish Oil, Vit D and probiotics (even strep-free ones) and we are supposed to be slowly introducing about 20 of them. I guess we can always give the charcoal is there is a negative reaction. Thanks again.
  3. My new Pandas rabbit hole is glutamate. I've read the posts on here about it and some recent research. It makes sense that flares could be glutamate storms and that's why NSAIDs (Advil) as glutamate antagonists, can have such an immediate positive effect. We just ran genetic info through Nutrahacker and over and over it says to avoid MSG (glutamate) and to take NAC (as well as other things). Then I looked up glutamate and some interesting info: https://unblindmymind.org The biochemist Katherine Reid reverses her daughters autism with a glutamate-free diet. In some ways it seems like a ver
  4. Has anyone had success with SLIT for seasonal allergies? Is there an advantage to the shots? I've read they might be more effective. The SLIT certainly seems an easier option, but want it to be effective.
  5. An update, things seemed to have settled down. Two Activated Charcoal caps before bed seem to completely stop the nightmares and finally getting good sleep. Maybe just getting used to the abx or no longer flaring, not sure, but the 2 caps before bed can't hurt.
  6. Thank you! Yes, this time ibuprofen didn't do the trick. Even the probiotic was problematic. Will try your suggestion.
  7. can I PM you?

  8. Thank you so much for responding. I agree it looks like a herx. This is day 4 after 3 doses and the extreme anxiety accompanied by facial tics come and go through out the day. Like mimi flares-almost like anxiety seizures. Sometimes there are long stretches in a day with no mini flares. Tried charcoal and had nightmares, but not like the awful ones which won't let you sleep at all. II hope to just the strep herx and we will be done with it and not to some other underlying infection. I think we have some gut issues and methylation issues, but it all seems overwhelming right now and I hate to s
  9. Just started on Azithromycin yesterday for Pandas flare from strep exposure. Part of the recent flare was anxiety, obsessional thoughts, moments of confusion. It seems to be a bit worse on the abx. Herx? We are doing detox with lemon water and charcoal which helps with sleep. Upon waking in particular there are moments of derealisation, brief moments of high anxiety, fear of going crazy, confusion. They seem to pass, almost like a seizure, but seem to be more frequent. Does it sound like the Pandas flare worsening, reaction to abx (have read that azithromyckn can have bad psychological effects
  10. I want to make sure everyone gets this link to the Discover article "Hidden Invaders" on PANDAS. Someone posted about the article on this forum and now Discover has posted it online so it's easy to share. http://discovermagazine.com/2017/april-2017/hidden-invaders#.WQsk069P1mI.email
  11. Here is Discover article online: http://discovermagazine.com/2017/april-2017/hidden-invaders#.WQsk069P1mI.email
  12. Turns out it was not rheumatic fever. I am starting to suspect it was a herx reaction as the same thing happened years ago right after getting strep. Luckily my ASO titers went down and the infection seems to have cleared, no more of the vivid dreams etc. Dr. said the rash may be lymes though. No other symptoms though. Anyway, now I realize that odd reactions to strep must run in the family...
  13. Yes, we have seen him and I would recommend him. We started on a series of supplements with him. There are a lot of supplements which can be overwhelming, but they all seem pretty benign. His lab offers the supplements, but they are VERY clear that you can get them wherever you want and are under no obligation to buy form his store. I feel more comfortable giving my DS supplements under a traditionally-trained MD. All was going very well, but we have had some issues with allergies this season. An air purifier seems to be helping. Dr. Bock seems brilliant and very knowledgable about PANDAS/
  14. Hi, I had strep and had to go off antibiotics for an allergic reaction after 2 days. Then 2 days later had anxiety, vivid dreams, severe insomnia which sort of resolved after a couple of days (I attributed this to the antibiotic, but maybe it was the strep? A PANDAS-like reaction?) Was then tested twice over next two weeks and throat culture was negative. Now, 5 weeks after the initial infection- anxiety, insomnia has returned along with and an odd rash. The rash usually comes at night, between both knees, warm to the touch, red burning patches, which gradually fade and then turn into a fe
  15. Hi, I wanted to see if you had any updates with the use of hookworms? I was just listening to a Radiolab podcast where they talk about its uses for allergies and other autoimmune diseases like MS. For anyone who is are interested the part on hookworms starts at 00:32:30: http://www.radiolab.org/story/91689-parasites/ Do you know if there are any new studies out on this? I wonder how many people have used it specifically for Pandas. Thanks! Here is a webinar from the Autism Research Institute. It includes information on many conditions: http://ariconference.com/?p=1766
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