JenniferG Posted April 25, 2014 Report Share Posted April 25, 2014 (edited) Could my child possibly reacting from Nystatin?? It is made from Streptomyces Noursei. Stopped Nystatin. Today is day 4 since she has had it. I slowly stopped it. She has been getting more emotional each day. And last night and today she is very congested. 1. Is the congestion a coincidence? Or could yeast cause it? 2. How often/quickly do you bump up Nystatin when you use it? Could I be taking too long to increase the dose? She was on 2 tabs AM and 1PM. I don't increase it without a few months in between. Is that waiting too long and that is why she is not showing improvement? 3. Anyone use GSE and Nystatin? 125mg tabs GSE tabs 4. She has had C Diff. The Nystatin is killing Sach B, so I should be supplementing with that also? Edited April 28, 2014 by jenniferg Link to comment Share on other sites More sharing options...
Mayzoo Posted April 26, 2014 Report Share Posted April 26, 2014 (edited) One way to rule Nystatin out, is to remove it from the daily meds for about a week. Do not remove anything else, or add anything else. At the end of the week, you should have a fair idea if Nystatin is a concern for your son or not. The link between streptomyces noursei vs streptococus was discussed pretty well here: http://latitudes.org/forums/index.php?showtopic=21901&hl=%2Bnystatin+%2Bstreptomyces#entry168879 If you have any questions after reading that thread, let me know and I hope LLM, I or someone else can help you. Edited April 26, 2014 by mayzoo Link to comment Share on other sites More sharing options...
LNN Posted April 26, 2014 Report Share Posted April 26, 2014 Nystatin never gave us any issues. After re-reading the post Mayzoo linked to, I can tell you that yeast did seem to be part of our problem and diflucan/nystatin did help. Just not entirely. Soon after that post, I found mold on my son's bedroom windows (cold winter air, an unlocked window which created a small leak of cold air into the room, a fish tank that evaporated warm, bacteria-laden water into the air = mildew problem). Got rid of the fish tank, cleaned and locked the window, cleaned bathroom window that had a similar issue - symptoms resolved. But nystatin was a positive experience for us. Link to comment Share on other sites More sharing options...
JenniferG Posted April 26, 2014 Author Report Share Posted April 26, 2014 I did not give her last night or thi AM dose. She was very snappy and cranky today. Emotional. I can't figure out what is going on. This flare has lasted forever. She had a positive r/s while on Augmentin. Changes to Azith behavior got a little better but she got a fever and her r/s was still positive. They also did a send out culture which was negative. Changed her to Duricef to be safe. She is also on Valtrex, Nystatin, Vit C, Vit D, Fish Oil. She was on Enhansa 150mg a day but I stopped it to see if she was reacting to it. She did well for 2 days. She had 2+ Clostridia on her Dec stool test. Wasn't C Diff tho. 4+ B Fragilis 4+ Bifido 3+ E Coli, 2+ Lactobac,3+ Enteroc,1+ Candida Parapsilosis. High Lysozyme. High Secretory IGA. I am clueless. Feel like tried everything. She had C Diff last year and that is where she took a nose dive. Hasn't been right since then Aug 2012. She was thriving on daily Aug for years before that. I don't understand. I am desperate. Link to comment Share on other sites More sharing options...
JenniferG Posted April 26, 2014 Author Report Share Posted April 26, 2014 LLM- what dosage did you use of Nystatin? Did you slowly work up? Did it cause nausea? Link to comment Share on other sites More sharing options...
Mayzoo Posted April 26, 2014 Report Share Posted April 26, 2014 It took almost a month to see changes in my kiddo after starting Azith. She had + rapid strep for almost 60 days straight. We started with 10 days Amox, then 10 Days Augmentin, then almost 50 days Azith to finally get a negative rapid test. Enhansa, at the higher doses, also kills yeast along with the anti-inflammatory action. However, as you likely know, you have to build up to that slowly. Link to comment Share on other sites More sharing options...
JenniferG Posted April 26, 2014 Author Report Share Posted April 26, 2014 Is she now on daily Azith? Do you do the home r/s? When I try to work up the Enhansa she gets emotional etc. she is also homo for a1298c mthfr. So I think she may have a methyl issue. Sounds like I know what I am talking about, but, honestly, that MTHFR confuses me. Link to comment Share on other sites More sharing options...
Mayzoo Posted April 27, 2014 Report Share Posted April 27, 2014 (edited) At first, kiddo was seen only by her pedi. Now we are seen by a PANDAS/Autism immuno. She has been on daily zith since Jan 2012 and the immuno added Augmentin back around May 2013. I have the ability to do the R/S at home, but all the tests in Jan/Feb of 2012 were in a docs office. The pedi was not readily willing to even retest her after the 10 days of amox. They were reluctant to retest after the 10 days of augmentin. Now after almost 60 days positive, they want to test her every single time we come in, regardless LOL. The pedi went through a major ideological turn around caring for her as they had never heard of PANDAS. I would say keep the Enhansa at the does just below emotion upset for several weeks. Then try to inch it up a bit and see how it goes. If she tolerates it, stay there for several weeks and try to inch it up again. If she does not tolerate it, stay at the lower dose for a few more weeks. It sounds like you need to increase much slower than the recommendations. My kiddo has +/- on the A1298C. I have tried treating her for that, but she is again the odd gal out on this one too. I cannot see any changes, good or bad with treatment. Many seem to see great improvements when they treat. Edited April 27, 2014 by mayzoo Link to comment Share on other sites More sharing options...
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