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aba last won the day on March 21 2015

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  1. I am wondering if anyone here has a premium membership to latitudes.org and benefits from it? Are you able to access others' blogs and are they helpful? How much of it is PANS-related? Any thoughts? Thanks
  2. fyi, mycoplasma can exist as a lyme co-infection.
  3. We no longer go to him either. If anyone wants to know why, they can PM me. Ironically (or not), on our long 6-year road, after countless naturopaths, medical doctors, homeopaths, many many "specialists", who, I will say, each initially felt confident that they could help (and felt perfectly comfortable taking thousands of dollars), the main things that have genuinely helped our daughter, have been things I have learned from other mothers on boards like this one. I'm not saying that we are done with the "professionals", but that I will be very judicious and never again completely acquiesce to any of them. They have many other clients vying for their time, and absolutely no one cares for our daughter, and wants to see her healed, more than I do, and will do the time and research necessary for that to happen. Even if they care, the bottom line is that this is a business for them. Incidentally, we have our daughter on a combination of herbs, mainly those found in Stephen Buhner's books, and she is improving in ways that I never thought possible. We are not out of the woods, but I feel empowered as a mother not to have to sit on pins and needles waiting for a "professional" to call me back when we are in crisis mode. There is something to be said for that.
  4. Yeah, if Lyme treatment was cut-and-dry I might agree with this approach. But I think it takes a really holistic approach to successful treatment, and like you said, often many different approaches til you find what works. I would be scared to question anything this doctor said! It's like "if you don't like me, find someone else" which we will!
  5. I don't think any of us like the idea of long-term antibiotics -- but right now, it's one of the therapies that, when combined with other things, does give relief for lots of kids. It comes to the point where allowing the drugs is better than watching them suffer so much. That's what it comes to. I'm still pretty new at this, and am currently transitioning to a LLMD myself. But I realize that there are basically 3 aspects to healing: 1) killing the bacteria/co-infections, while helping 2) immune support and 3) detoxification. There is a pinned post at the top of this forum for help with lyme, and finding a doc, etc. You may have to travel for an LLMD if you can't find one nearby.
  6. This is taken from one of the LLMD's webpage that was recommended by the ILADS. While I realize the bulk of it may be true from a certain perspective. But it certainly does not seem that they are interested in working as a "team" and respecting personal opinion regarding certain treatments. Esp. since Lyme treatments are a moving target..... What do you think?? ****
  7. Thanks -- I remember him from the documentary. dasu, those were the recommendations (DC-area docs) because that's what I was specifically asking for... I know there are llmd docs all over, you just have to ask for recommendations.
  8. Can someone please PM me with a recommendation for an LLMD in the DC/Va area? Good with kids and the whole PANS-connection? Thanks
  9. Thanks for the update. Hope she continues to progress!
  10. 2380 is still high and I wouldn't think it is wiped out. My dd's #'s are in the same range, and I think the dr. didn't even suggest re-testing the numbers that soon after initial treatment.
  11. DD is currently on first week of abx. She has high mycoP, so we tested for babesia, bartonella and a few other things. So far, the bart came back negative, with Quest at least. I am hoping we don't have to test for Lyme, but may need to, depending on how this course works. We're early into it though. We live in a high-lyme area, and after reading up on it, it's very possible that I have it and conferred it to her. Not sure though....just tossing this out there for thoughts. Thanks for responding .
  12. The other day DD heard the word "sixty" and said, "that sounds like sexy". From a 9yo . Very similar. At least now parents are getting the help they need much earlier, thanks to other parents and awareness. It took us 6 years and (I don't want to count how many) doctors to get to this point.
  13. source: http://www.nepandasparents.com/resources/resourcelinks.html http://online.liebertpub.com/toc/cap/25/1 quote: "The Journal of Child and Adolescent Psychopharmacology (JCAP) special issue on pediatric acute-onset neuropsychiatric syndrome (PANS) is now available to download for free until March 15, 2015. This is the first published collection of articles concerning PANS and PANDAS. After March 15, download will be available for purchase. The edition includes papers on use of Cefdinir, IVIG, Eating Disorders, IVIG, Plasma Apheresis, and more. These articles will help spread awareness on PANS itself as well as treatment options. Hopefully more data driven studies will be forthcoming."
  14. Thanks. Yesterday I gave her 2 doses of her probiotics, but it's hard on school days, since we give her the abx right before school and her probiotic has to be mixed in water. So far, no side effects at all, but we are still early in the game.
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