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Everything posted by SSS

  1. Just throwing this out there: Regular Amoxicillin has been notorious for not eradicating strep completely. I cringe every time I read a PANS story that starts: 'My child had a strep infection, was prescribed amoxicillin, then PANS symptoms seemed to start' I don't know, if it were me, and it sounds like your child has hardly been on any antibiotics, and you have a Dr. who is saying 'PANDAS', I'd ask for some Azithromycin (I'm assuming your child has no or hardly any history with this antibiotic) and see if I could clear up what's happening. Be sure to give a good probiotic 2-3 hours away from antibiotics. My .02 cents.
  2. rowingmom- did your dd have a herx with Malarone? Thanks--
  3. My dd's brain fog gets better when she's on an antibiotic that treats Lyme. I say that T. Anna since I saw you post your boy has Bartonella- unfortunately the 2 infections travel together almost always. I also say it because my dd had been off antibiotics for 18 months or so (I'm bad with exact time frames) and when back on Biaxin, or Ceftin, she is clearer. I can't deny it.
  4. Got our Myco tests back 0 IgG 0 IgM Never any Myco P.
  5. This was the paper he wrote on PANS and Lyme: http://www.dovepress.com/getfile.php?fileID=12113
  6. Hopeny, I am sure you know, but make sure to increase magnesium supplementation while on Cipro (2-3 hours away) when I was on fluoroquinolone antibiotics, I stayed very mellow (no exercise) and lots of magnesium. I heard vitamin C, too. After everything we've done for dd, we never had her Myco titers pulled until last week. Waiting anxiously for the results.
  7. You could ask the urologist to send it off to a lab- it's not uncommon. I would explain to him/ her your GI symptoms- how you were unable to take the course currently recommended to you. How about Bicillin shots? They are administered in the buttock, by pass the gut. I did them 2-3 times a week for 6 months during Lyme treatment- Not sure how many you would need for ongoing strep.
  8. I would ask them to culture the actual bacteria, to see what antibiotics the bacteria is resistant, to get the correct medicine. I read of a young woman who had a terrible time with bladder/ ongoing urine infections/ pain, finally got the bacteria strains cultured (she also had more than 1 strain) and one of them only Vancomycin would treat.
  9. We had Kaiser insurance at the time (HMO, and awful, awful about PANS) so no, no insurance coverage. At the time I think dd was around 40 pounds, 1st HD IVIG 2.00 dose over 2 days about $5k total, 2nd HD IVIG 1.50 dose over 2 days about $3.5 total.
  10. Coram is one chain of infusion centers across the US. When we did our HD-IVIG's, our treating MD sent the prescription over (and spoke personally to the center over the phone) It was local, excellent service, dd was able to sleep in her own bed at night.
  11. I am no expert in tonsil removal, but sheer common sense tells me bacteria is released from them after removal- right? All that fumbling around? Seriously. Is there another Dr. who may be able to prescribe you some? Maybe even a walk in clinic- say you've had an ongoing fever since removal. They'd most likely give you at least an Azithromycin Z-pack. I think you are quite a lovely young lady, and your future very bright. Hang in there!
  12. Yes. My dd does not have outward physical manifestations like 'typical' Lyme patients: no joint pain, no knee pain, doesn't complain of any headaches. She gets up and goes to school every day. It's all neuro here, too- OCD (moving target kind, gets thoughts and ideas in her head that plague her, etc.) Can do vocal tics. Mouthy. At worst, horribly rude. Hyper, walks around and can't settle. At home, no attention span. Have you treated with antibiotics the high Myco, and H Pylori?
  13. This is how far gone I am: I thought upon opening the thread you were going to talk about an infection picked up from the grocery store cart handle. Ha! Good vibes for a good school week-----
  14. Have you tried any other antibiotic besides amoxicillin? Like Azithromycin? We personally had no luck with homeopathic remedies- despite 2 excellent homeopaths to guide us. This was before we found PANS. Some homeopathic detox or drainage remedies we used later were good while on antibiotics, I thought, but constitutional and CEASE therapy got us nowhere. Probably because infections and inflammation was underneath. I did some Biociden drops with my dd years ago- it was pretty powerful, as far as die off, and so strong tasting I had to mix it in a teaspoon of melted chocolate chips- it was before she could swallow capsules. It didn't give us relief personally, but I can't say for others- I know how overwhelming and expensive Lyme and co infection testing is- but, it will always wonder at the back of your brain unless you rule it out, and don't see progress, I would think. I really thought the whole Lyme infection was impossible for us, so sheltered we were and no history/ memories of ticks- but it was very real. Make sure you get copies of all your tests-
  15. Buhner also recommends/ suggests putting the tinctures in pomegranate juice, which is pretty flavorful (and sugary) Maybe your DS would drink down 1/4 cup of the juice with the tinctures in it?
  16. We did through Igenex 3 years ago, she was negative (I was positive.) Not saying she doesn't/ didn't have it. We did treat her for it. Had her Myco titers and a CBC pulled today, and am finally going to have her get the Advanced Lab test first week of June (she is off all antibx, and by that time it will be a full 4 weeks.) Then, I give up!
  17. I was looking at various labs in the thought of retesting my dd for Lyme, and came across this paper: http://www.dovepress.com/getfile.php?fileID=12113 Perhaps it's been posted here before, but thought it was interesting.
  18. Really nice posts, and LLM, your writing is absolutely brilliant, as usual, with your wise insightful perspective.
  19. Also, Flagyl and Tindamax treat some parasites, too. But nothing fungal/ yeast.
  20. Hi- No, neither Flagyl nor Tindamax will treat yeast/ fungi- they treat bacteria only, and also used as cyst busters in Lyme treatment. GSE (grapefruit seed extract) is believed to have cyst busting properties, and also treat yeast- But sometimes it's good to get an OAT test to actually see what the heck is going on. Just some thoughts.
  21. Hi- Flagyl won't help with the yeast- it might make it worse- You could do an OAT test (urine) to see where the gut yeast/ bacteria currently stand-
  22. Thank you! I wonder what the difference is between Milford PCR blood test and the Igenex PCR blood test- PCR's are looking for the fragments, I bet they are similar? My own Igenex Lyme blood PCR came back positive- but I don't think that many do- It's so hard this path, treating these PANS kids, gosh I KNOW. I'm glad your dd is doing better------ We also took a long break from treating infections, we just had to- hit a wall, after wall, after wall, but recently decided to give it another try (and finally test for Myco P) and see where it takes us- again-- over the summer- Just spent $250. on supplements in anticipation-- lipo glutathione, milk thistle, etc.
  23. For me personally, and I've been using Enhansa for a long time (it seems), it never loses effectiveness, nor do I need to keep increasing my dose for more power. In fact, I recently started getting it through the pharmacy (thinking I would get nice price break from my insurance, and only a $10- or so pay difference) But, it seems stronger- maybe because it is fresher- and I can't go up- now holding my dose- it does recommend if you go off, to titrate back down-
  24. Here is a link to PharmaNac http://www.pharmanac.com/faq/ Also, there is a study with PharmaNac and Stanford University if you google. Don't judge, but I gave it to my dd in 1/2 glass of Sprite/ 7 up (child never, ever gets soda) and she looked forward to it. I think I gave it 2x a day for the first box, followed by another box 1x a day. It's not cheap (of course) but it literally got rid of skin picking- she was picking her moles and some freckles to bleed :-( HTH.
  25. Just throwing out something- not advice per say, I can't say what I'd do if not eating had been in our picture- probably a HD- IVIG But you said high Myco P- recently, Biaxin full dose antibiotic has been a miracle here. Typically, Doxy and/ or Biaxin are used for Myco P. Also, we had an episode/ phase of skin picking, and buying PharmaNac (a good tasting fizzy drink- NAC, highly absorbable) actually stopped the skin picking. Believed to clear out excess glutamate.
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