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KaraM

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KaraM last won the day on June 30 2014

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About KaraM

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    Female
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    Massachusetts

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  1. Hi Everyone, I know this can be a tough time of year, but we are going to try for meeting on Saturday, December 13th from 1:30 to 3:00. 8 Front St #305 Salem MA As usual, rsvp is helpful but by no means necessary. Kara
  2. Boosting this post as a reminder that we will be meeting in Salem MA today at 9:30. 8 Front St. Suite 305
  3. Hopefully my other posts tell you a bit more...but my son also had the Lyme and Myco P...major food allergies as well. His combo was Bactrim, Biaxin and Tindamax (pulsed). For supplements...Sacchoboulardi and Culturelle. My son also took Vitamin D (he was deficient) Now, based on the advice of Dr. H (my LLMD here in MA), I give both of them EpiCor Immunity Plus to keep their immune systems strong. My son continues to to take Vitamin D. By daughter also takes L-Glutamine for her stomach. Toward the end of her 3 years on abx, she started complaining of stomach aches. It had never been
  4. At the very beginning of this, after taking her to the pediatrician (and being prescribed Celexa (SSRI) within 15 minutes), we also got a therapist referral. We did not fill the script. We called the therapist. She told us about PANDAS and suggested we test for strep. But when the throat culture came back negative, she concluded it was not PANDAS. (that's a side note). She went to the (CBT/ERP) therapist and we did diligiently did the homework for a few months. Initially we thought there was improvement, but after a few weeks she just continued to get worse. Every item she got over was replac
  5. When she was diagnosed with Bartonella, Dr. B put her on a daily combo of Zithromax and Bactrim. Dr. J. continued with that. When Dr. J suspected she also had Lyme in spite of the negative test results. So he added a Cyst buster, Tindamax, on weekends. That is when she was able to start pushing through the last 5% (and after adding that, her Lyme tests eventually came back positive).
  6. We will be holding our next support group meeting on Saturday, August 9th from 9:30 - 11:00. 8 Front Street Suite 305 Salem, MA RSVPs are helpful, but are by no means required. (Just want to make sure we have enough cookies ) Please let me know if you have any questions. And please feel free to pass the word. Thank you, Kara
  7. HI There... I have not posted in a very long time...but we've just had such an incredible few weeks...and I can remember how reading stories like this when we were in the worst place would often give me hope. My dd is now 12. When she was 7 she had debilitating germ contamination fear OCD...couldn't get dressed, couldn't make it to school...I could go on and on, fight or flight rages, adhd like behavior, barely passing the state exams, etc. etc.. I know many of you know exactly what I'm talking about. Dr. B. initially diagnosed and treated for PANDAS, but he eventually found Barton
  8. HI beerae22, I'm one of people LLM mentioned above. We only had a brief encounter with restricted food intake it is was the result of contamination fears (her lips that might touch the food, the food itself, etc). However, the father of the child featured in Niel Swidey's Globe articel (see http://pandasnetwork.org/the-boston-globe-features-pandas/) has come to our Salem Support Groups a few times. He is not on this board, but he has told me that he is willing to speak with anyone. So let me know if you want me to connect you with him. I'll need you to send me your email address though
  9. I understand not wanting to head down the lyme road. It's daunting to say the least. But I just feel the need to share my daughter's experience in response to the above quote. Where did you hear that? When my dd first went on zithromax for pandas/strep she improved relatively quickly and was at at least 90% after 6 months on zithromax alone. She had a standard lyme test after being on zithromax for a few months. One specific band showed up, but it was interpreted as negative. After she took the nose dive after six months on zithromax, we played around for a few more months with different
  10. Hi Everyone, We will be holding our next support group meeting on Saturday, February 8th from 2:00 - 3:30ish... 8 Front Street Suite 305 Salem, MA RSVPs are helpful, but are by no means required. (Just want to make sure we have enough cookies ) Please let me know if you have any questions. And please feel free to pass the word. Thank you, Kara
  11. I just logged on after months of being away to post our upcoming Salem Support Group, saw this post and thought I'd take this opportunity to respond to your question and update people on where we are. I don't recognized some of the new names and I'm sure you all may not recognize mine! Anyway, like LLM's, our recovery was saw tooth. Thanks to LLM and others on this forum, I think ours was quicker than hers (3 years). We started out with the OCD that became apparent over the course of a few months (not overnight) and eventually debilitating. It took us about 6 months after visiting the pedi
  12. Thanks, everyone. I am actually on herbals A-L complex for my Lyme. My dd sees Dr. J. He doesn't really do the herbal stuff. I'm thinking I'll ask my LLMD the next time I see her what she would do for my dd and perhaps switch over to her or add her into the mix. Dr. J. has the same philosophy - treat only if there are symptoms. The hardest part for me is determining if something is a symptoms. I feel like I over analyze every single behavior. I haven't tracked her symptoms consistently for a couple of years now. But perhaps it's time to start. I'll at least get the notebook out,
  13. We did it over three years ago when it was in the study phase and it was the best $400 we ever spent. It gave us the ammunition to get long term antibiotics from our pediatrician (or at least enough to tie us over until we got to see a PANDAS specialist). It helped us make the decision about which medical path to follow for treatment (i.e. abx vs SSRIs) because therapy alone was clearly not working. And over those three years, when I would sometimes question whether we were on the right path, I would remember that test and say "yes." It is available in Massachusetts now, too. Kara
  14. I haven't been on the board as much lately. Partly because I haven't had as much of a need and partly because I haven' had time given a new job (which I was able to take because of the same reasons I don't have a need to be on the board). I do try to continue providing support in some ways to others. And please know I'm happy to receive emails if anyone who knows our history wants to tell someone else to contact me. My dd has been off antibiotics since the beginning of March after three years of being treated first for PANDAS, then Bartonella and Lyme. She's been doing really, really wel
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