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Sternjs

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Everything posted by Sternjs

  1. Despite 15 months worth of antibiotics (mostly doxy and biaxin) our 12 year old dd has had high myco numbers for well over a year now. She is being treated with the assumption that she has an autoimmune encepalopathy (our doc does not seem to like using the term PANS.) After being out of school for all of 2014-15 she actually made it through full days in September and October of 2015 before things began to get worse again. She is now back on home bound instruction and while not as intense many of the original behavioral symptoms have returned. Though she has tested positive for Strep, Lyme, Coxsackie, and HHV6 these have mostly resolved. The constant through the last 18 months has been the persistently elevated myco titres. Interestingly though she also had a Myco PCR test done in Nov 2015 that came back negative. Can anyone explain how her IgM titres (indicative of a current infection) can be so high yet there be a negative PCR result? Rather than an actual infection is this "simply" immune dysregulation? She also has elevated IgE titres (785, negative is <200) despite being thoroughly tested for allergies and parasites, all of which came back negative. Myco p Results: Ref Range IgM >769 U/ml positive, IgG >320 U/ml positive 9/24/14 IgM 1632 U/ml (pos), IgG 817 U/ml (pos) 12/29/14 IgM 1310 U/ml (pos), IgG 810 U/ml (pos) 3/24/15 IgM 1586 U/ml (pos), IgG 1167 U/ml (pos) 6/23/15 IgM 1385 U/ml (pos), IgG 682 U/ml (pos) 9/17/15 IgM 1901 U/ml (pos), IgG 1399 U/ml (pos) 12/11/15 IgM 1652 U/ml (pos), IgG 1378 U/ml (pos) In July 2015 she had IVIG that did seem to alleviate many of the emotional issues, at least for a few months. As this was out of pocket it's not likely that we can afford to do this again. She has been under Dr Bs (NY) care and he has been great but it feels like we are at a dead end. We recently went to an infectious disease doc to look at this from a different perspective. To our surprise he did not dismiss our concerns but said that after speaking with several doctors plus a director at LabCorp (I guess to assess the veracity of the results) he suggested that we see a pediatric ID doc at a regional hospital...ie, he didn't know what to make of it. Watching her fall apart all over again has been tough enough on my wife and me but it is just crushing our daughter's spirit. If anyone has further treatment suggestions or doctors that have a handle on this we would appreciate your input.
  2. Our 11 year old dd has been out of school all year. Almost a year in, she remains positive for Lyme, Strep (asymptomatic), Mycoplasma, Coxsackie, and HHV6 along with a highly elevated IgM though she has been thoroughly tested for allergies all of which are negative. All this despite 6 months worth of everything from Ceftin to Biaxin, to Doxycilin, to Levaquin and other antibiotics as well as a small store;'s worth of supplements and homeopathic support.. She has been diagnosed with encephalopathy caused by an autoimmune response to the various antibodies. We have seen Dr T and are now with Dr B in NY both of whom have been great but we still don't have our girl back. Dr B believes the next step is IVIG but of course insurance turned us down. He had her tested for anti-neuronal anitbodies in an attempt to find something the insurance company would more easily recognize as appropriately treated by IVIG. Sadly/happily (not sure which) the test came back negative. I'm sure we will appeal the original insurance decision but we are very lost about what to do next. We've tried CBT but our dd won't or can't (so hard to tell) participate. Do we save our money and bring her to the Rothman Center instead or go all in on the IVIG? Is anyone aware of a comprehensive treatment center in the northeast? Has anyone else been lost in the wilderness? My wife and I will never quit looking but could really use some fresh ideas...thanks for any help.
  3. I'm hoping some of you can weigh in on this. Our 11 year old dd was first diagnosed in Oct 2014 following sudden and severe onset of separation anxiety and mild ticing. She has been on home tutoring the entire school year as we wait for her symptoms to improve. Initially the only positive test was for mycoplasma but as we visited additional docs and had more testing other issues emerged. Dr Ts testing revealed high Coxsakie B IgG titres and high IgE titres. Follow up testing revealed no allergies or parasites, the typical cause of elevated IgE. After 2 months of Zithromax, 1 month of Biaxin, and 2 weeks of Levaquin along with a large variety of supplements we saw no improvement and decided to get another perspective...though Dr T was great and we will likely seek his opinion again in the future. In the meantime we are now seeing Dr B in the Hudson Valley who is much closer to home and has been fantastic. Thinking we should have seen some progress he ordered up even more tests. Despite previous negative Lyme tests (Elisa and Labcorp) she is positive on the Igenex test and also came back positive for Anti-DNase B Strep antibodies and high HHV 6 antibodies. Dr B changed her to minocycline for the Mycoplasma and added Ceftin for the Lyme. What is especially confounding is that she is essentially physically asymptomatic with just occasional mild headaches and mild lethargy. Meanwhile her psychiatric symptoms have been pretty severe. She seems to have an immune system that is just not functioning properly. If anyone has dealt with PANS/PANDAS with multifaceted triggers I'd love to hear about your experience, your doctors theories, and treatment options....thanks!
  4. Thanks for all the comments and suggestions. Our biggest issue right now is simply dealing with school and tutoring. My wife and I are both teachers so we certainly get the importance of academics but her school refusal is so severe there is just no way of getting her to go. At this point it looks like she could lose an entire year...as she was one of the youngest in her grade maybe that would be for the best. Has anyone had such extreme school issues?
  5. Does anyone have experience with PANS caused strictly by a mycoplasma infection? Our previously confident, athletic, outgoing 11 yr old daughter is now more like a shy, emotionally volatile 5 year old. We first saw this change when she went to a short, 5 night sleep-away camp in July of this year. Without any hint that there would be a problem we received many desperate calls from the camp staff and were forced to come get her after 3 nights. Looking back she had missed a week of school back in late April with a cough that was so severe she literally couldn't go 10 seconds without coughing. Strep culture was negative so we never received a satisfactory diagnosis at the time. Needless to say but we did not see any connection at that time. Chalking it up to a bad case of home sickness my wife and I thought little more about it until several weeks later when she was set to end the summer with several short soccer and dance day camps. Even though she had attended these in past years and had great experiences she cried for hours, even while at camp. Her separation anxiety became even more pronounced when middle school began. Despite trying everything from dragging her to school, staying in the office while she attempted to attend class, shortening her day...nothing worked. Rather than taking the school social workers advise and seeking psychiatric help we took her to the pediatrician for a physical evaluation and blood work. He kindly called us on a Sunday, said she was physically fine, gave his diagnosis of "school phobia" and concurred that it was time to seek therapy as she had by then missed 2 weeks of school. At this point the school guidance counselor mentioned the word PANDAS to us for the first time. Curiosity piqued, and KNOWING this behavior was just not my kid I asked for a copy of the blood test results (I always do this now) which showed a high ELISA Lyme test. Armed with this we went to a Lyme Literate pediatrician who said it was very suspicious and performed a load of other blood work which revealed a high mycoplasma titre (IgM of 1632 and IgG of 817) though now a negative Lyme ELISA and negative Western Blot. It was at this point, in early October that the new pediatrician said she thought this was PANS. After a month of Zithromax IgM has dropped to 1317 and IgG to 762 both of which are still high. Her separation anxiety is now so severe she can't even attend soccer practice let alone school. Even home tutoring has been difficult with huge mood swings and such emotional sensitivity that the slightest, most gentle critique is met with running to her room and up to an hour of crying. We are now near Thanksgiving break with no sign that she will be able to attend school anytime soon. Outside of what I would describe as some deep, quick blinking when upset there are no tics nor are there any obvious OCD behaviors unless what we are witnessing is an expression of OCD. In addition to the antibiotic she is taking fish oil, reishi, glutathione, vitamin D, and probiotics. We also tried 500 mg of ibuprofen for 10 days without result. If anyone has words of wisdom, treatment ideas, has experience with a timeline to healing we would greatly appreciate hearing from you.
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