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Everything posted by anonymous0121

  1. actually the person is wrong, it is a bacteria so wonder if the immune system could react to it like other strep strains... Streptomyces noursei is a bacterium species in the genus Streptomyces. Uses[edit]Nystatin is a polyene antifungal medication isolated from S. noursei
  2. thank you so much for the info, my PANDAS doc recommended against it cause he said it was derived from strep. my son is severely sensitive to yeast/mold/fungus, wondering if that is going to be a problem? he is psychotic raging to almost all meds it seems, antibiotix, psych meds, ibuprophen, antihistamines etc... it is crazy and no one has a idea why, except maybe liver clearance issues (phase II)?
  3. do you mind sharing privately with me who your LLMD is? we quit ours last year and have been looking for a new one desperately. thank you
  4. do you mind sharing how and what you did to get help through emergency room, there have been so many days I have started to drive to the ER when he was flipping out and in agony so bad but then I turned around because all I could think was they would just give him atavan and send us home.
  5. my son is now the same way, ibuprphen (compounded) use to be a life saver for him but last few years it causes psychotic rages, along with antihistamines, antibiotics, psych meds or any meds what so ever. liver is all I can think of or I read that people in phase 3 of adrenal fatigue syndrome can develop paradoxical or sensativities to meds that use to work. a lot of herbs are making him psychotic too just with one drop (phenol sensitive is all I could figure out)... it is sooo frustrating!
  6. Stanford immunologist wanted us to run t and b cells to help decide if he needed LD or HD ivig. I didn't want to poke him for just that little testing so we just took blood before the ivig and am waiting to see if quest ran the right test, I pray so... then need to schedule consult with Stanford doc again I guess to find out.
  7. he just said it may take a few infusions to see any benefit and to keep going with current low dose.... he didn't really answer me about the increase in tics.
  8. my son has lyme and coinfections too, detox is huge for my son, we did dr data liver detox test and when he is on a bunch of meds his phase II liver pathway is too slow, major issues. he cant seem to tolerate any meds or anything. do you mind sharing what you do for detox? we are about to try nystatin, cause diflucan that use to do wonders is making his rages just worse, he cant handle any ABX, they make his stress response rages worse too, just mess up his gut neurotransmitters bad and he becomes psychotic. have been limping along with colloidal silver but that isn't helping anymore either.
  9. do you mind sharing your LLMD with me privately and also how you treated the bart and bab, we have done so many treatments for years with this but he just crashes with each treatment, so sensitive.
  10. thank you for the info, we just did cmp and his sodium was 144 (ref range is 135-146 - not sure if it is for children or not, waiting to hear from doc) - I give him a little sea salt for his adrenals and dysautonomia his potassium is 4.4 ref range 3.8 - 5.1 don't see a choline, just a chloride which is 104 ref range 98 - 110.... does any of this seem as a cause? it is so bad now he is litteraly peeing his pants uncontrollably, his nervous system is so jacked up on adrenaline 24x7, I cant find anyone to address it. He cant sleep, crazy luny hyper, rages cycle almost hourly and his penis hurt
  11. And the antibiotic that finally gives some resolution is a clue as well. If strep abx aren't working after some time, look for different infection(s) that may be causing the PANS/PANDAS reaction. DD tested positive for bartonella, but treatment for cysts/protozoa is what gave her lasting improvement. That along with MTHFR support. Medicine hasn't gotten to the point yet where all infections can be properly diagnosed. Doctors are only now figuring out that gut bacteria are a very important piece of the immune system. Medicine isn't as advanced as we would like to think it is. The
  12. my son has this same problem and we have been to tons of docs, finally did a ultrasound and it said inflammation indicative of IC, but cant find a doc to do anything about it. citrates/citrus etc make it worse so we manage diet, Dr theo theoharides from tufts university has a lot of research on IC and autism and mast cell activation disorder, you might want to look that up, he recommends some natural products for the inflammation. My son has dysautonomia so I also wondered about that connection, too sympathetic.
  13. Hi all, I am at wits end, my son finally got IVIG last week, all be it only 40 g, not the HD I was wanting but replacement dose for his immune deficiency. so now his tics are like twice as bad, could be from the stress of it all but I am worried we made his encephalitis worse. He has had these terrible explosive barking/grunting noises that happen non stop, it hurts him so much and stressed him so bad it makes the rages worse also. anyone else experience worsening of tics after IVIG and what helped, nothing I try is helping...
  14. My sons tics and rages have been severe for 9 months now. Doc is recommending nystatin for, but we haven't done this before because another pandas doc told me nystatin was derived from strp, anyone know about this? Diflucan use to do wonders immediately for him but now is making rages worse
  15. thanks everyone for the recommendations... dr chez's office told us he doesn't do IVIG, that it was another doc in his office that did but has since moved, not sure I believe it since another friend of mine just got recommendation from chez for ivig, but whatever... dr bhatka office was no help (we have seen her a few months ago and wasn't much help)... waiting two weeks for apt with dr schweig, ... finally found a local allergist/immunologist here in sac... dr chips that put the order through for ivig for my son, thank god and he even ordered a home nurse to do it in our home, I am a bit ner
  16. anyone know of any materials that defiine IVIG protocols for PANS vs: lyme vs: immune deficiency? from what I have seen doing low dose ivig could makef PANS symptoms worse, that PANS needs high dose IVIG? those that have done IVIG, would you mind sharing the product and doseage/protocol the docs used? when my son did it 10 years ago with dr gupta he premedicated with benedryl and ibuprophen and for 7 days after. seemed to help my son a lot , but now those two drugs make him psychotic for some reason. deborah
  17. my son has IgG and IgA def, he received IVIG from dr gupta in Irvine 10 years ago but had a bad 6th infusion, crapy nurse jabbed him bad multiple times and had to bring in two anestesiologists to hold him down and poke more, he developed severe PTSD to needles, but now he is begging for IVIG or something to help, the rages have been severe as well as the tics and OCD. Dr Griffith was the one that sent us to Stanford in 2006 when my son developed tics after having tonsils out, Dr lewis there recommended IVIG but we didn't do it because of his PTSD to needles. I tried to call dr lewis but didn't
  18. can you P M me your LLMD's name and also how you contacted dr K, my son needs help badly, we live in northern California... deborah
  19. we believe myself and my son have bartonella, but he is not handling any treatments at all, makes his rages psychotic, just single drop of an herb makes him crazy, wondering if you could share your LLMD with me and if anyone has heard of someone going psychotic on the slightest bug killer?
  20. hi all, I am new to the group, my son is 13, original autism diagnosis,then lyme and coinfections then PANS/encephalitis. This past 6 months have been for him and our family and nothing that has previously pulled him out of a flair is working. I am desperately trying to get him IVIG and find the right protocol. Have apt at Stanford in a few days, wondering if anyone can recommend a good doc in California or have experience with getting ivig with Stanford immunology dept? thank you deborah
  21. Trying to find ivig for my 13 year old son with PANS, immune deficiency and autism in California, anyone have luck with Stanford or anywhere in Northern California and mind sharing how they got it and experience. My son is in severe shape and been desperately searching for help for years.
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