JenniferG Posted February 17, 2013 Report Share Posted February 17, 2013 I posted earlier about Meg's Metamatrix results. Here are some additional things I am curious if or how you treat. Her good bacteria Lact and Bifido were OK.....on the low side but not indicated low. ... I was giving her 300 billion Culturelle a day at the time. The DO was shocked and said I was over doing it. He gave me a probiotic of 100 billion with both laco and bifo in it at one time a day. When we got MEtamatrix test results he said to continue the 100 billion. She was doing VERY well (nausea and belly upset wise) on the 300. Her Sac B was elevated at 3+. I was giving her 4-6 Florastor a day. I stopped it because i noticed an increase in her "hurting spot symptoms" and increase i anxiety when i gave it to her. With the results, he didn't recommend anything for the high Sah B. said it was beneficial. She was a6+ for H Pylori. He isn't treating that yet. She is nausea us, has a decreased appetite and heartburn. She had 3 parasites...b hominis, e nana and third wasn't able to be identified. She is allergic to Flagyl. He called in Alinia, the pharmacy needs to order, so we get it on Monday. Since she was C Diff neg. I tried to restart her Amox. I also added in her Prevacid. After a few doses I began to see a decrease in anxiety and OCD, nothing magical, but a consistent slow decrease, but she started with a throat tic....she hasn't had a tic 5 years!. She also noticed it. I am SO darn nervous about the C Diff that when she complained of severe nausea this AM and had the ill look, I didn't giver her the Amox. I gave her Azithromycin instead......GI said that was less likely to cause C Diff..so then she has a complete meltdown later on......pacing, crying..."so sad", suicidal thoughts......I ended up giving her the Amoxil. So.....did she tic because the Amoxil was working? Did she melt because the Amoxil worked aNd the Azithromycin didn't. Does it really help/not help that quickly? Should the high Sach B be treated? While we were waiting for the results the only thing she was on was the 100 billion and she was stable. Still had OCD/anxiety but no big fluctuations. I need her back. I never thought we would be this far. Oh, and her Anti Gliadin sigA was high at 7. So, we have been GF for 2 days ( with all 3 kids) and we have a noticed a LARGE decrease in the hyper behavior and the loudness level.....they always seem to be screaming, and just loud in general...for the passed 2 days it has been much more pleasant here. We went to a b day part today AND went out to eat after. Something we never ever do because of their hyperness. At 6:30 the boys were asking to go home because the were tired! Normal for GF in the beginning? Link to comment Share on other sites More sharing options...
ThinkGutBacteria Posted February 17, 2013 Report Share Posted February 17, 2013 Gosh, that sounds awful. I'm curious, though, why did you restart the antibiotics? Did you get a chance to listen to Gregor Reid's YouTube talks on probiotics? He mentions dosing and how antibiotics like amoxicillin can spur pathogens (like S. pyogenes) to release their toxins. Most people with autoimmune diseases have trouble with gliadin and leaky gut. Have you tried things like L. casei, and Bifidobacteria, and glutamine to strengthen the intestinal barrier? Have you tried all the usual tic reducers like magnesium (without calcium), b vitamins, etc.? I hate to recommend it yet, but we *may* be seeing some good anti-tic results with tiny amounts of n-acetyl glutamine (similar to glucosamine) mixed in with my dd7's probiotic (jarrow formulas baby''s jarro-dophilus with FOS and GOS). You might also want to try Gregor Reid's probiotic combo in Jarrow's fem-dophilus and other brands. Lastly, there are compounds like carvacrol in herbs like oregano and thyme that induce regulatory T cells, which help autoimmune diseases. I give dd7 something called Tulsi tea (with honey). It's delicious and as a type of basil plant, completely harmless and rich in anti-inflammatory compounds like carvacrol. Good luck. Link to comment Share on other sites More sharing options...
LNN Posted February 17, 2013 Report Share Posted February 17, 2013 My first reaction is that 300 Billion of just Culturelle is quite high. It's only one strain of probiotic if I recall. I think a lower dose of a blend might be a better option, especially if it's in one pill and reduces your DDs total pill load. I don't have any research to back this up. Sacc B is supposed to be "good" for everyone. It makes my DS ragey, impulsive and aggressive. Very similar to a yeast infection for him. I've tried it twice for extened periods and both times were awful. So one option is to stay away from Sacc B and see if, over time, supplementing with other strains changes the gut terrain. You say that he isn't treating the h pylori, but here's an article (only did a very brief search) that shows alinia can be helpful against h pylori. http://www.medpagetoday.com/MeetingCoverage/ACG/16633 Your post suggests that you started previcid, amox, then a switch to zith, and GF all within a short time. If I'm reading this correctly, then its hard to say what's what. Also, when you ate out, did you stay GF at the restaurant? I too am confused about why you re-started antibiotics. If you're going to start alinia, I'd go back to what you were doing at baseline for a few days and then start it. Then you'd have a better way to gauge just the effects of the alinia. In whatever order you decide to add things, it's helpful to wait at least a week in between changes and only change one thing at a time. I know how tempting it is to throw everything at it. I hope you're able to see positive results soon! Link to comment Share on other sites More sharing options...
NancyD Posted February 17, 2013 Report Share Posted February 17, 2013 (edited) You may want to consider going completely dye-free to see if that helps the tics. Artificial dyes used to make my DD's tics, OCD, and mood dysregulation much worse. Even worse, they cause violent rages. By the way, you cannot get Alinia dye-free -- not even compounded. We had to go back to Tindamax (compounded dye-free) and GSE for c-diff. Edited February 17, 2013 by NancyD Link to comment Share on other sites More sharing options...
JenniferG Posted February 17, 2013 Author Report Share Posted February 17, 2013 (edited) You may want to consider going completely dye-free to see if that helps the tics. Artificial dyes used to make my DD's tics, OCD, and mood dysregulation much worse. Even worse, they cause violent rages. By the way, you cannot get Alinia dye-free -- not even compounded. We had to go back to Tindamax (compounded dye-free) and GSE for c-diff. Tics stopped when I stopped ABX..hmmm Edited February 17, 2013 by JenniferG Link to comment Share on other sites More sharing options...
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