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Everything posted by chubbermommy

  1. I want to do the Igenex co-infections panel on DS, who tested positive for Lyme a few months ago, but he is on two abx currently (plus some natural antimicrobials and a host of supplements). I don't want to risk taking him off abx because he is doing well on them right now, but if he is taking them, will that mess up the results of the testing? He is on Augmentin and Biaxin which I do not believe are used to treat babesia or bart. What about the other co-infections? I can't find any info on the Igenex website about how abx affect the test results. Help please?
  2. rowingmom, did you DD ever test positive for babesia? Or did you choose not to test any more and just treat as if she did? My ND suspects DS has babesia, despite a negative test but he doesn't have typical babesia symptoms. (well, he doesn't have typical anything symptoms) So treating with one drop of Beyond Balance MC Bab 1 every two/three days.
  3. We've only knowingly been treating for Lyme since mid-July, and added a 2nd abx (biaxin) and a biofilm dissolver in mid-Aug so I know we have a long ways to go. Ten days after adding that 2nd abx, tics started to decrease. So after an amazing first week of school where tics were quite low, DS picks up a cold and now he's worse again. Pretty much back to the beginning when he was only on one abx. Cold is gone, but tics are up. So I'm just wondering if the flares will lessen over time, as he remains on treatment. Or because the tics are autoimmune caused, and the treatment is addressing the Lyme/co, I need to do something else.
  4. Wombat, have you tried any of the Facebook groups for PANDAS/PANS? I can't recall exactly who, but there are several people who use homeopathy. Perhaps you'd get more of a response there. We haven't really used it except through our ND for detox support. Like rowingmom, I can't really understand it either but it seems to work very well for some. Good luck!
  5. Is there a difference in abx response if you have PANDAS due to strep or PANS due to Lyme or some other infection? I was under the impression (I don't know why) that IVIG is not recommended for Lyme and co.
  6. rowingmom, I'm so happy for you and DD. You are always so helpful and insightful in your posts, thank you for sharing your experiences and knowledge. :)
  7. I'll ask my son, who is 10, what he says. He's in a class with different kids this year; the kids in his class last year kind of went on this journey with him since he started ticcing last September. But he's had to explain himself to some of his classmates. Although he's fairly comfortable around them since he's known most of them since kindergarten/grade 1. I know over the course of this past year he's talked about it many times with other kids. I remember him telling me he told his friends he had PANDAS and they all laughed (him included) b/c it's kind of a funny name. I'll let you know tomorrow.
  8. It depends on the medication and your child, I think. My son was put on clonidine for his tics; clonidine has also be used for ADHD. They had no effects on his tics, made him sleepy, and at a slightly higher dose, made him totally out of it and zombie like. So no thanks. But I think it's hard to say what the reaction will be.
  9. I'm sorry this is happening to you. We're not seeing any progress here but for us it's not been too long. Do you think he has another infection that is preventing progress? You are treating for Lyme, but any co-infections? Something that was previously hidden but now cropping up b/c of puberty and lyme treatment?
  10. Can you find an LLMD or an LLND or a PANDAS doctor in your area? My family doctor prescribed DS abx for over 6 months at the beginning but then she felt she was out of her element and referred us to neurology and ID, who gave us the 'yes it's PANDAS', 'well, maybe it's Tourette's' and 'it can't be Lyme' despite holding a CDC positive test in their hands. I was naive. You're not alone.
  11. NAC makes my DS tic worse b/c it's also a biofilm dissolver. Oops! I think we dissolved too much and caused a herx. What about anti-inflammatories?
  12. rowingmom, I'll be talking to the chiro in the near future, but I'm not sure how experienced he is with treating Lyme patients. I think he has done it for Lyme patients with joint pain, etc., but not PANDAS/PANS kids. I'll let you know what he says. 911rn, I totally believe that it can reduce pain and inflammation! I'm just wondering how some people can have such a reduction of symptoms using the laser. Something to explore....
  13. I'm learning about this after reading about a success story on one of my many Facebook PANDAS groups, and went searching for information. There are others that have been helped by it, although I'm still trying to understand it. My ND's office has a chiropractor who uses it for Lyme patients, but he is not that familiar with PANS. I know it reduces inflammation and increases blood flow and helps facilitate healing, but does it kill bacteria? I don't know whether or not to try it. Has anyone had any experience with this?
  14. No, it was Dr. W who suggested the Arabinex and/or the OLE for immune modulation. But I don't want to give too many new things at once so I asked her which would be better, and she said the Arabinex. We shall see..... I keep hoping something will change when I give him something new, but so far, nothing much has happened.
  15. I hope you find some answers. Good luck and keep us posted.
  16. I don't have any yet, but she suggested 'Arabinex' from Thorne. She said it's not something you'd see immediate results from, but for the long term for immune modulation. https://shop.thorne.com/products/immune-support/arabinex-reg
  17. Just got off the phone with one of my NDs and talking about immune modulation and how we can redirect the immune system into fighting bacteria and viruses instead of DS' brain. She said she uses larch arabinogalactan with a lot of kids - I've been doing a lot of reading and this is the first I've heard of it. Anyone else use it? She also recommended olive leaf extract. What is a good brand to use? And dosage?
  18. Did your ped give you any abx for the recurring infections? If not, I'd go back asap and ask for some right away. As pr40 said, print out the treatment protocol and show your doctor. I actually used this: http://pandasnetwork.org/treatments/antibiotics/ with my family doctor and she agreed to prescribe us abx while we waited for neurologist and ID appts (which amounted to nothing, but that's another story).
  19. So I noticed that DS' breath last night had a weird fermented smell. Kind of like he had a couple beers. I smelled him this morning and it is not so bad. Smelled his skin too but he smells normal ("mommy!! what are you doing?!?!") . I started thinking about yeast overgrowth; he's been on abx for 3 weeks and does take 50 billion units of probiotics. He's also on Sacc. B., which is a yeast, so I'm wondering if I should cut back on the Sacc.B for a bit. He takes his last abx around dinner, and his probiotics right before bed (as per the ND's advice). He hasn't had any tummy issues. Has this happened to anyone else? What should I do?
  20. So in that respect, if he's coming down with a virus, or someone else in the family is, should we be ramping up on the anti-inflammatories? He doesn't take any usually, except for the omega 3; I can't think of anything that he takes that would be considered a good anti-inflammatory....
  21. When my son tics severely, he sometimes throws - thankfully, only sofa cushions so far. It's not something he can control at all. I know for him it's not a voluntary thing, so punishing him isn't going to help any. In fact, may cause more stress resulting in more tics. Can you place soft things nearby so when she has the compulsion to throw, it's something soft? Like bean bags or stuffed animals?
  22. I remember reading somewhere that Lyme suppresses the immune system, in some more than others. You could have Lyme but not have any antibodies show up on the test b/c their production is being suppressed. And it is only after antibiotics that the tests come back positive, like the body was given some help and THEN the immune response could be mounted. Does that make sense? Still on my first cup of coffee here.
  23. Awesome!! :) I'm so happy for you! Thanks for sharing, and keeping hope alive.
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