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

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Good morning 

I hope all my pans/pandas peeps are ok...

Finally got my girl seen by a doctor who initially thought lymes but when getting blood work back it was neg for lyme but showed mycoplasma igg over  5 and  igm over 4100. 

Doctor wants her on bactrim but making her get on tons of probiotics first.  I think more testing should be done because she didnt look deep into other blood work..but i am relieved to finally see something thats actually there not just a crazy kid. 

Any insight would be great. She starts school monday and she wanted to start antibiotics already but doctor wants her body prepared for the long haul

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My DS responded very well to Clarithromycin after showing high Mycoplasma titers.  It’s common for kids to get yeast issues from antibiotics even while taking probiotics, so it’s important they have the probiotic 2 or 3 times a day.  Be sure to space the probiotic at least 2 hours away from antibiotic.  I’ve used Gutpro (expensive) and Jarrow (reasonable).  I wouldn’t skimp and use a generic grocery store or drug store brand.  Yeast can cause issues itself.  I also give my DS a yeast control supplement, especially while on abx, and for a few weeks after.  We’ve used Candicid Forte and OrthoFlora yeast support (Protocol for Life Balance).  I’m sure Whole Foods also sells yeast control supplements.  

I prayer that your daughter finally  gets some relief from the abx.  Keep us posted.  

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Hi, my daughter has also struggled with PANS/ PANDAS and her mycoplasma titers have been elevated this year as well. She never tested positive for Lyme until she had a recent test through our LLMD, who has treated her in the past even though she just had indeterminate test results. She has also been treated effectively a few years ago with IVIG from a PANDAS specialist. It helped, but symptoms came back, and she was showing more fatigue and aching muscles the past year. My hunch was this is Lyme.  So she saw the Lyme doctor again recently and she recommended this time that she get a urine Lyme test through DNA connections. It came back positive for Lyme, Bartonella , and Erlichia. I am so glad she had that test, and we could stop wondering whether Lyme was a factor or not. I’m frustrated that past diagnostic tests for Lyme weren’t positive and thus she continued to suffer. 

She is currently being treated for Lyme again, and Bartonella and Mycoplasma. There are new regimens the LLMDs are using for persistent/ chronic Lyme, including Disuliram, which is still experimental but showing promise, and a combination of Dapsone along with other antibiotics such as minocycline and rifampin. None of these approaches are easy, but they are reports of people getting better after 3 months with Disulfiram, and a few months or more of Dapsone protocols. 

I STRONGLY recommend you get the Lyme panel DNA Connexions test. It is not cheap- 650 dollars, but you don’t need a doctor’s order- you go online and pay and they will mail you the kit. There are too many people walking around with Lyme that are undiagnosed. Lyme can manifest as predominantly neuropsychiatric symptoms in children as well. 

I don’t work for the company  I’m just a mom that has dealt with this was for too long, and now I think there may be hope for kids and adults with Lyme  Your doctor- even some PANDAS docs and most PCPS- won’t even be aware of this test  

Good luck!

 

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When my kid got mycoplasma my doc gave him an HCL push.  One of the VERY BEST, most STRIKING, results we ever got!  He felt better by the time we had left the office.  Here is the recipe:

5 CC of HCL
4 CC selenium
1 CC Magnesium Chloride
10-15 cc normal saline

 

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