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I need some help. Some direction. So after seeing the new doctor in October and trying azithromycin, which didn’t bring mycoplasma levels down even a smidge after 3 weeks, he switched her to a antibacterial and augmentin. She took it for 21 days and I had her doing Epson baths, probiotics, vit c and watching diet and it only seems like it’s worse. The doctor did put in a order for IVIG and tonight the company called us to let us know bcbs denied it.. I’m so upset

the biggest concerns are her hyperactivity because she is scared, her intrusive thoughts, and her ocd in general. Brushing teeth takes about 10 min. She also gets scared about thoughts and throws up a lot

 

any advice on what to tell the dr or ask?

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@Robinhubb

It’s common for insurance to deny first IVIG request.  Is the doctor sending an appeal letter? My DS’s IVIG was approved after peer-to-peer call with insurance physician.  It was submitted under Autoimmune Encephalitis code.  Also our MD uses Briova (infusion service) for IVIG.  They handle the appeal.  DS has been getting monthly IVIG for over 2 years. It saved his life.  

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What other antibiotics have you tried? Azithromycin didn’t work for us for myco p either. Biaxcin/Augmentin helped and then  Clindamycin and Rifampicin seemed to do it (warning—pretty tough on the stomach). Also it took about a month of being on a new antibiotic each time for us to notice differences.  Intrusive thoughts/images were the last thing to go.

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  • 3 months later...

25 now, diagnosed at 7. Talk therapy is the biggest thing I can advise. Once the brain knows of certain thoughts and behaviors, It can repeat them. Mine did. And antibiotics can just keep wiping out the gut bacteria that helps with mental health and many of them cross the blood brain barrier causing their own effects.  I was reminded of this recently when I took metronidazole/doxycycline and had an awful reaction. 
 

Other than that my thoughts are, check your probiotics. Personally some made me feel really weird and I finally realized I needed ones that jived with my body (no histamine, no d lactate)

Also maybe just regular baths for a bit, epsom salt can help with electrolytes but as an adult now the only medication I take is lamotrigine and it sort of regulates electrolyte channels. Too much vitamin c makes me jittery also. 
 

Maybe give the body a little to find its baseline and go from there. But also- I admire everything you’re doing for your child ❤️ and there’s no right or wrong answer only trial and error with sickness. 

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