HopeinHIM Posted May 9, 2015 Report Share Posted May 9, 2015 Dd 6 is struggling. She is my little niece. I have received so much from this forum with my DS so I know the depth of knowledge that can be available. She began emotional liability in the summer and quickly moved into anxiety attacks. She has always been sensitive and very clingy and has tactile issues as well. She is rarely sick and never needed antibiotics. She is bright and in kindergarten and doing well when not having uncontrollable attacks at home. Symptoms: mostly all psychiatric manifestations. Paranoia/some hallucinations during anxiety food issues separation anxiety lots of cavities (over 20and counting) occasional weak legs screams she wants to die body morph issues (thinks she is fat and ugly)She weights 45lbs and very tiny little girl! Dr T diagnosed with PANS bc of her symptoms and family history with my DS . Cox socci was very high as well. With Diet changes (no gluten) and 2 months on Valtrex her attacks calmed slightly (less frequent and not as intense. But they are returning. She started to see(llmd)Dr G in Pa and he ran Igenx. IgM IgG 39 IND 31 IND 41 + 41 IND LLMD says he will keep eye on her but doesn't think its lyme's. Poor baby. She says she wants to Die bc her brain wont leave her alone!!!Dr recommends hormone Pregnenolone supplement bc hers was very low <5 IgG IgA and IGM standard labs were all on low side but Still NORMAL! Her mom is polarized!! Link to comment Share on other sites More sharing options...
pr40 Posted May 10, 2015 Report Share Posted May 10, 2015 igenex is very sensitive test and the results here don't seem to indicate much of lyme or coinfections. is she on abx? has she ever been? lots of cavities would indicate bacterial infection. dd had the same. why not go dairy free as well? gluten has a large protein molecule and so does the protein in dairy. I would focus on infections and inflammation and not lyme. don't know about hormons, sorry. Link to comment Share on other sites More sharing options...
sf_mom Posted May 10, 2015 Report Share Posted May 10, 2015 (edited) I would do follow up testing for further confirmation. A couple of great test would be the following: Advanced Labs: http://www.advanced-lab.com/spirochete.php Band 31 kDa Epitope Test: They would not need to redraw blood if tested recently. You would only need to have LLMD order test via Igenex. Look for description of test under Lyme Disease testing - 31 KDA Epitope: http://www.igenex.com Retest via Igenex using Dot Blot test which is antigen not antibody testing. Look for description under Lyme Disease testing - Antigen test: http://www.igenex.com None of these tests are antibody tests and highly accurate when positive. These tests were very helpful in determining if Lyme was an issue for our family. Edited May 10, 2015 by sf_mom Link to comment Share on other sites More sharing options...
rowingmom Posted May 10, 2015 Report Share Posted May 10, 2015 Lyme isn't the only infection to cause PANS reactions. Bartonella, babesia and mycoplasma are common and rarely tested for if lyme returns negative. These can be stand alone infections. Lyme does not need to be involved. Link to comment Share on other sites More sharing options...
kmacdonald34 Posted May 10, 2015 Report Share Posted May 10, 2015 Poor thing. A lot of her symptoms sound like what my DD had when she had her PANS/PANDAS onset. Is a doctor willing to try antibiotics with her? My daughter never tested positive for strep or anything else (she is slightly immune deficient) . We are seeing a team of PANDAS dr and they tried amoxicillan and it worked. She is pretty much symptom free. Hope she can find some help and answers. Link to comment Share on other sites More sharing options...
HopeinHIM Posted May 21, 2015 Author Report Share Posted May 21, 2015 I would do follow up testing for further confirmation. A couple of great test would be the following: Advanced Labs: http://www.advanced-lab.com/spirochete.php Band 31 kDa Epitope Test: They would not need to redraw blood if tested recently. You would only need to have LLMD order test via Igenex. Look for description of test under Lyme Disease testing - 31 KDA Epitope: http://www.igenex.com Retest via Igenex using Dot Blot test which is antigen not antibody testing. Look for description under Lyme Disease testing - Antigen test: http://www.igenex.com None of these tests are antibody tests and highly accurate when positive. These tests were very helpful in determining if Lyme was an issue for our family. Thank You!!!!!!! Great advice Link to comment Share on other sites More sharing options...
nicklemama Posted May 22, 2015 Report Share Posted May 22, 2015 IFA antibody tests are just not highly accurate. Igenex gets more positives than standard Western Blot because they test more bands and they test two different borellia strains vs just one through companies like Quest. It's still an antibody test. With a result like that and symptoms still ongoing, I would look at a more accurate test and I would look at co infections. IFA tests are highly dependent on having an immune system that is working well and making antibodies. Link to comment Share on other sites More sharing options...
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