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aba

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Everything posted by aba

  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. So, we are starting DD's abx tx in a few days and I have been reading about herx reactions and trying to figure out what to expect. I am still a bit unclear about how to tell the difference between a true herx reaction and what might be an allergic reaction to the meds. Also, as she is really volatile right now, I'm a bit paranoid that her constant rollercoaster could be confused with herxing and really not be related at all, but mean that the abx is the wrong one. Please, any thoughts?
  4. 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.
  5. 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
  6. 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!
  7. 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?? ****
  8. 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.
  9. 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.
  10. Thanks for the update. Hope she continues to progress!
  11. 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.
  12. aba

    Lyme questions

    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 .
  13. My first question is: Of those with a child with Lyme-related PANS, how frequently does it present as congenital? How many of you were also tested and with what results? Also, I found this thread dhttp://www.healingwell.com/community/default.aspx?f=30&m=2894492 discussing the differences in lyme tests. What have you found to be the best go-to test for Lyme? Stony Brook, IgeneX, Medical Diagnostics Laboratory or Advanced Laboratory Services?
  14. I'm not in any way making light of the situation, because we have been in tears for much of the past few months as DD's symptoms seem to intensify. But it struck me as sickly humorous when I noticed that our dog will go hide when she gets really bad with the raging, screaming, etc... An ANIMAL even notices that this behavior is not normal and is scared of a little girl :( . Sometimes you laugh to keep from crying (and totally losing it!).... Anyone else have anecdotes that only parents here would understand??
  15. 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."
  16. 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.
  17. 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.
  18. Regarding the omega's, I never heard anything specific about doing 3's only. I do know that when we don't give her this one for a few days, we can tell a difference (i.e. she does better with it than without). Not sure if she would do better on the 3's only though. I'll add that to our ever-growing list of questions to ask on our next dr. appt .
  19. aba

    Rifampin & Cipro

    Thanks. I make my own topical mag with the Ancient Minerals bulk flakes. I don't think it's as strong as the professionally produced product, but I guess it still shouldn't hurt. We don't have a bathtub where we live right now, so salt baths are not an option. That's why I was hoping we could do it topically, in addition to the Natural Tranquility mag supplement (1 tsp in water) that we give her. We have sensory issues here too, but she likes the mag spray. Funny how they are all so different in their preferences. When she first started all this, all the other sensory moms said their little girls loved leggings. My daughter would throw herself off a bridge if she had to wear those snug leggings!
  20. Thanks for all responses. We just started the abx about 1.5 hours ago, and so far, so good (trying not to sit and stare at her, waiting for something to happen - lol). mayzoo, she is on clindamycin and rifampin. The insert for the drugs lists the adverse reactions you mention. The problem in my head, is that these same things (diarrhea, g/i stuff, etc.) are things I often see mentioned as a herx reaction. So, is it possible that the "adverse reaction", as the standard medical community sees it, is actually a herx reaction, from a different angle? You mention charcoal -- wouldn't that carry the danger of absorbing some of the meds? Is there a specific time after dosing that you administer the charcoal?
  21. We have to be very careful of salicylates, even natural ones, because they exacerbate her behavior. Therefore, we stay away from strongly fruit-flavored supplements, which you find a LOT in products for kids. Also, we give DD Nordic Naturals ProEFA Lemon Flavor, 1000 mg, 180 gels -- one per day (1000 mg). She actually CHEWS them, as she can't swallow a pill. (This fascinates me since she is so picky about what she will and won't put in her mouth!) But Nordic Naturals is the best for disguising the "fish" taste. And this product is a fraction of the cost of ones marketed specifically for children.
  22. aba

    Rifampin & Cipro

    Bumping this to ask if topical mag would be a good idea to help detox?
  23. There is another book that is mentioned on these forums that we had, The Explosive Child by Ross Greene. It might be a great book for NT children. However, when we are dealing with a PANS flare, it is useless. And when she is not flaring, we don't need it .
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