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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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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!

Edited by Sternjs

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Have you tried from an autoimmune approach-namely, steroids?

It worked for my kids! Perhaps, if she did indeed have lyme, strep and the assorted viruses, her PANS is now into an autoimmune stage rather than an infectious one

Just a thought.

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Bartonella causes psychiatric symptoms. With a positive lyme test, I recommend you see an LLMD. Two very big name PANDAS docs could not get my son to any sort of lasting wellness. An LLMD who was fairly new to the game has done just that.

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Autoimmunity can also cause psychiatric symptoms. We had the opposite experience as nickelmama. Extensive integrative LLMD care did not bring the healing that more "traditional" care did. My child did have positive lyme and babesia tests.

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What a frustrating puzzle all this is.

 

We are in a similar position, with positive results for strep, mycoplasma and lyme (IgM), along with a bartonella diagnosis based on symptoms.

 

At this point, I am under the assumption that both infectious and autoimmune angles may be at work.

Edited by jan251

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Steroids are contra indicated when a person has Lyme. They diminish immune function and make symptoms worse.

 

Lyme treatment can take quite a while. If you are seeing Dr. Bock, you are in good hands. He is a LLMD. If it were me, I would follow his protocol. Dr. Trifiletti is not Lyme literate.

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Treating bartonella and Igenex IND lyme with abx improved neuro/psych symptoms to a large degree.

 

But it wasn't until I discovered underlying, asymptomatic babesia (DD had tested negative for both microti and duncani through Igenex) while trialling babesia herbs, and treating that as well that DD has had healing.

 

We have never used steroids to suppress immune function. According to herbalist Stephen Buhner the immune suppressive tendencies of lyme/co need to be counteracted with immune supporting/modulating (not immune stimulating) herbs. For this we use cordyceps, low dose American ginseng and very low dose astragalus.

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