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Everything posted by landamom

  1. As of now they can't ask your religion or anything related to religion... dd has a religious exemption AT a Christian school but things change quickly these days so who knows what the future holds for anything related to healthcare.
  2. Well I'm sure you know that the best pediatric Lyme dr. Is Dr. Jones. He's been doing it for literally 50 years. He is very well versed in PANS and has a close working relationship with Dr. Bouboulis and consults with him. Of couse, he is not covered by insurance and honestly I don't know of any LLMDs who are. It sucks. Feel free to PM me if you have any questions. We just had our first visit with him last month. Good luck-
  3. It's ironic, we fully vaxed our dd8 up until she was 15 months and then stopped when I got strong enough to stand up to the pediatrician because I didn't want the MMR. I don't know, call it mothers instinct. I believe the vaccines she did have set up her immune system issues and if she had gotten the MMR who knows where she would be now. Regardless, we have had her titers checked for most of it - Diptheria - no immunity. HIB - no immunity. HEP B (which they OVER VAX for) - no immunity. Pneumococcal strep - less then minimal immunity too all the strains. I have no idea what to make of it, but I
  4. Well, my thoughts are with you during this scary time, and with everyone on this board who has to deal with so much uncertainty. I think it's great that your doctor ordered an MRI. I wish more did because if nothing else it would gather data. We have worked with four of the recommended PANDAS/PANS docs so far and not one has suggested doing any kind of brain scan. I wonder why this is? Regardless, I know it isn't top of your mind but please do keep us posted. All the best!
  5. Wondering if any of you had done IvIg recently with this product. If you have then I think you know which doctor has switched to it. Any pros? Cons? Thanks!
  6. Hi Teri, we just had our appointment with him three weeks ago. You have done Igenex so you won't need that but he will still take blood, in his office, so be prepared for that! That was a surprise to us and it took our dd a little bit of time to stop freaking out. They do have numbing cream though, that they will apply if needed. He will do a VERY thorough physical exam which I find is something the pandas docs don't do generally. And he looks specifically for Lyme physical issues. He will go over history but I'm sure you've already sent back the patient package and summary? Just make sure to
  7. I was wondering if any of you have experience with this? Would you do it? Would you have concerns? And by IV abx I mean having a line inserted into your child for a period of time and administering abx this way... Not just an injection or one time thing in the doctors office. Thank you!
  8. BTW when I say IV abx, I mean putting a line into your child for a period of time and administering abx that way... Not just a shot or one time thing in the doctors office. Thanks!
  9. Hello, I will also be posting this over in the Lyme forum, but I was wondering if any of you have experience with this? Would you do it? Would you have concerns? Thank you!!
  10. I'd love to talk to someone about their experience! Thanks
  11. Honestly, low D3 is common with EVERYONE due to the fact that we are so concerned with skin cancer and so many things have sunscreen in them now. Literally, everyone I know who has bloodwork done in the past year has had low D. Young, old, sick or not. It still needs to be addressed, but it isn't nessesarily specific to Lyme or anything else.
  12. My dd has/ had Lyme. She had a CDC positive blood test last spring and we started treating her with abx. In august she was dx with PANS and has now seen several of the "experts". Just wanted to give you basic background on us so that you can understand where I am coming from ... My belief has been that there is no difference between "neuro" Lyme and PANS. Lyme is a bacteria and it can cause (trigger) an autoimmune reaction and inflammation in the brain just as strep can or mycoP or some viruses. I know this will not be a popular view, but ironically it is shared by Dr. jones who we saw just tw
  13. I am pretty sure that others on the board have also had an issue with Florastor . Hopefully things will improve off of it!
  14. I don't really know why one would herx on Florastor... I didn't think it was killing anything off, just restoring what is missing. I would think its more likely an actual side effect from it. One way to distinguish the difference... A herx doesn't last more then a few days or so. It goes away and then you should see improvement. If it continues each time you take it I would call that a side effect.
  15. I have had this same question regarding Sach B also. It actually says in the patient flyer that it can cause, I believe, systemic yeast overgrowth. Even though it is a "good" Yeast and not candida, I imagine can still get overgrown. Just not sure if would affect them the same way as candida overgrowth. Btw, my dd has the same tic where on bad days she can barely get a word out without having to stop and suck in air. It's almost like a hyperventilating/ anxiety attack type of thing. But you wil probably also get some people suggesting she has Babesia, it doesn't have to mean that so don't be al
  16. Lilly, my daughter recently had a blood test for candida that came back positive, so yes I know that is an issue for her! We are on day 6 of Nystatin in a one month prescrition, so I am not sure when to expect results, if there will be any. I can say her intrusive thoughts, which haven't been much of an issue in the past, have been very bad lately and worse this week, so I am wondering about a herx reaction at this point. I would love to think the nystatin can work but I know that yeast overgrowth can be very difficult to treat. We have an appointment next week with an integrative doc so I am
  17. I was wondering how many of us have found success in diminishing the severity or occurrence of Intrusive thoughts and OCD through IvIg? Did it last? And how long did it take to see results? Thank you!
  18. It was a "Lyme specialist" who ordered it to begin with and then never followed up... We've also been to Dr. J in Ct and he said that it wasn't relevant, either. Ours was more then mold though, it was a full metabolic testing... Lilly was yours specific for mold? Maybe it's different to ours then!
  19. We had an OAT test done over the summer... I STILL haven't found a doctor who can decipher it!! Two of them (both well known pandas specialists) called it "gobbledeegook" and "fringe" testing and I paid $500 out of pocket for that. I still hope I can find someone who understands it... We have an apptment with Dr. B from California next week so I'm hoping she knows something about it good luck with yours - I hope it is helpful to you!
  20. I was just about to post a similar thread additionally, do NOT mention Lyme, either. For those parents whose children are suffering with both lyme and pandas or Lyme/pans, make sure that is not the diagnosis code used when trying to get insurance to approve IvIg.
  21. Hi all, we had an appointment with Dr. J last week and he did some blood work... Apparently one of the tests was the Quest candida blood test. They called this morning to tell us it was positive. I honestly didn't know you can do a blood test for systemic yeast. He has prescribed Nystatin for a month for it. Have any of you gone this route? I'm wondering if this is effective enough for a child. I had Yeast overgrowth myself and managed it with some herbals and diet change, but I can't eliminate anything else from her diet right now - she is already not gaining weight. Will the Nystatin be help
  22. Are you talking about the subcutaneous injections? My understanding is that these are actually very bad for PANDAS kids because they are not high dose. Dr. Jones recently explained that too low of a dose can actually cause things to get worse. I am no expert on this so I am sure you will get more concrete explanations from others!
  23. We have an appointment with Dr. Bhakta coming up, so I am hoping that she can help somehow with this.I know she is very well informed about the gut and believes that unless you get the gut functioning well the abx won't be as effective. Also, we saw dr. jones last week and his office just called to say our candida blood test came back positive. So I wonder how this is affecting things, too? Thanks all!
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