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Showing content with the highest reputation since 08/16/2019 in all areas

  1. 1 point
    cmac

    Intrusive thoughts not resolving

    We did a whole bunch of different probiotics—Culturelle, GutPro, Flora, etc. For antibiotics the ones that he was on longest were a combo of Biaxcin/Augmentin and then later Clindamycin/Rifampicin because the strep came down, but not the Myco p. (The Clindamycin was really rough on his stomach though).
  2. 1 point
    lw47

    Mycoplasma results

    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!
  3. 1 point
    maryangela

    Mycoplasma results

    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.
  4. 1 point
    Soo. I don't know what to think. I guess it was positive. The doctor we saw is a director of movement disorders at neurology department of National Children's hospital in DC and has 41 years of experience. I guess he's seen it all. He did neuro exam, said my baby is perfectly healthy. Said his tics are a 2 out of 10. He sees this every day all day. Said the next few weeks will be most interesting as they could start winding down and taper off. Said he didn't have a crystal ball and every child is different. But 15 percent of kids have tics. Said transient can definitely be both vocal and motor. Also mentioned they could go away and then rear it's ugly head in puberty. But at the end said 80 percent of kids with tics do not have them at age 18, which should be encouraging. I have a blood order for chemistry, cbc, thyroid and some other stuff. He said wait and watch approach is a way to go and would not medicate my baby( good) unless tics are very bothersome to HIM Said magnesium supplements are a good idea.


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