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Bella1604

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  1. Hi Again! Mayo Clinic performed the tests. They did bartonella, Lyme western blot, ehrlichia, coxsackie, strep titers, ebv, herpesviruses, s.pneumoniae, babesia, folate, homocysteine, b burgdor and I'm sure I'm missing a few others- this list is crazy long.
  2. How long do you give new Meds to work before you call the doc?? We changed antibiotics 10 days ago and my son is a LOT worse. Where do you draw the line between herx and a bad med? So upset.
  3. Hi Mama. We tested through the hospital here and all of those listed were ordered and negative.
  4. Hi all. Just got our second set of bloodwork back. We are neg for Lyme, but have mycoplasma, pans, MTHFR, and roseola. I'm disappointed because strep titers went down on one child, the other stayed relatively the same (he is our more sick child). Questions are: 1. Does anyone here use antivirals? How are they working? I'm assuming we will be put on because of roseola. 2. How long for titers to come down on strep for more complex cases? We are on azith and cefdinir 3. Do you find the antifungals work well? We've done diflucan on and off with success. I'm wondering if we need a longer stent. 4. How is micro plasma treated? I hate it! Thanks so much all for your time. I know these questions have to be repetitive.
  5. Hi all. My PANS child was exposed to a virus where he was throwing up and feeling down for 24 hours. This was a week ago.... His behavior has not returned to baseline. Is this normal for PANS folks? Should I call Dr T and ask for an anti viral? Wasn't sure. He isn't as bad as prior to starting treatment, but definitely not at base. We are still on daily azith and cefdinir plus probiotics.
  6. Thanks. Kids haven't had tonsils or adenoids for years now. Tested negative for Lyme. Mycoplasma was bad and tested In a way that Dr T felt was PANS or PANDAS. I'll ask him to test for the others next week as we will want a follow up to see if our ABX are even making a dent. The kids seem to improve the most with the MTHFR meds. I feel so emotionally down today. My child who did horribly on the first day of school is weighing so heavily on my heart. He suffers so much. Thanks for letting me vent here; I literally can't anywhere else.
  7. What do you all recommend for the accompanying stomach upset from taking antibiotics? Both of my children are now having stomach pains 10 days into our treatment.
  8. This was helpful to me. Both of my children are high on IGG and IGM. Patience. NOT a strong point for me.
  9. Sorry I have been MIA; school started (one child was successful, the other not so much). We are back on a negative swing after three days of good behavior. Dark circles under the eyes are back along with aggression and defiance. I will give him an Epsom salt bath and watch over the next day and if no improvement, start nagging Dr. T's office again. I found out that Mary is OOO until next week. From reading the previous posts, I think we are doing herx-like reactions, but am picking up the anti-fungal RX just in case. Other triggers for my kids are salicylates and benzoates; we have been strict S1 Feingold for two years now so food diaries have helped. My children are also MTHFR homozygous so we are supplementing for that using supps from the MTHFR.org site. Slowing building those up. We also do probiotics without strep strains. Also after reading other posts, am thinking I need to contact a Dr in CT that was referred for parasite testing. Does this ever really end? What is T&A removal?
  10. We have a diflucan RX. I just haven't picked it up yet. I increased their probiotics yesterday afternoon; today; he is happy and agreeable. This makes me happy but is this another sign that is was herx? I'll keep calling the doc office.
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