ThinkGutBacteria

Aside from its antiinflammatory role, curcumin helps the body make more of a natural antimicrobial compound called cathelicidin, so taking curcumin may help antibiotics work better. Originally cathelicidin was thought to be produced solely as a result of vitamin D binding to its receptor (VDR), but new research shows curcumin may use some other mechanism. This might be good news for kids whose PANS gets worse on vitmain D. (Although there's still the issue of some bacteria adapting to resist cathelicidin, like some kinds of Salmonella). See http://www.ncbi.nlm.nih.gov/pubmed/22841393

"Probiotics" is a hot topic for research right now because of its large therapeutic potential, but the concept is also somewhat in disarray. Scientists simply don't know yet the best species, combination of species, or dose for many ailments of interest. Bifidobacterium infants, for example, seems to help adult women with irritable bowel syndrome, but no one knows whether it reduces ear infections. Or fructooligosaccharides (FOS), which is a kind of natural probiotic-promoting fiber you'll find in some formulations of probiotics, helps mice fend off respiratory viruses. Will that help your son? Maybe. Who knows. As for the supplement in question, L. acidophilus is not a major species in that part of the body and the dose seem pretty small. It may help, but maybe not enough to notice. In the form of a lozenge, S. salivarius K12 is a potential weapon against Streptococcus pyogenes, and may therefore help protect against things like strep throat. But, again, that dose seems kind of small, the data is still too thin, and S. salivarius is not a normal gut resident (and may even become pathogenic there) so swallowing large amounts might not be the best idea. The most exciting benefits of probiotics will undoubtedly come from prevention (if they're used in the mother during pregnancy or during the child's first year or two of life. As for treatments that seem to reduce the frequency of ear infections in 6-yr-olds, you might want to loo into adenoidectomy (removing his adenoids), supplementing with 2000-4000 IU vitamin D if he's deficient, and to a lesser extent xylitol gum/lozenges and cod liver oil. A few links of interest: Beneficial effects of probiotics in upper respiratory tract infections and their mechanical actions to antagonize pathogens http://onlinelibrary.wiley.com/store/10.1111/j.1365-2672.2012.05394.x/asset/jam5394.pdf;jsessionid=3111D0A38F611E0F975FF6A71DBCD544.d04t03?v=1&t=hdjnsejrf8ca24a4 Chronic Middle Ear Infections Linked To Resistant Biofilm Bacteria http://www.sciencedaily.com/releases/2006/07/060712075834.htm Lemon-flavored cod liver oil and a multivitamin-mineral supplement for the secondary prevention of otitis media in young children: pilot research. http://www.ncbi.nlm.nih.gov/pubmed/12126022 Xylitol for preventing acute otitis media (middle ear infections) in children up to 12 years of age. http://www.ncbi.nlm.nih.gov/pubmed/22071833

Yeah, it's kind of caustic stuff, but there's an interesting paper out there by a group in Holland suggesting carvacrol (a volatile compound in oregano and simiilar herbs) can actually help goose the production of regulatory T cells (and damp down autoimmunity) when administered in the presence of an autoimmune trigger. I tried using it once years ago as an antibiotic alternative for dysbiosis. The results were disappointing for that.

You were right the first time, Nancy. NAC is a precursor to glutathione. They are not the same compounds. There are (literally) thousands of studies showing or implying benefit of oral NAC in conditions like OCD, autism (irritability), anxiety, etc. By contrast there are next to ZERO studies on acetyl-glutathione, which, I have to say is extremely suspicious. I smell snake oil. Glutathione is probably better raised by something like NAC. I know of people at CpnHelp.com who take NAC religiously for their multiple sclerosis, believing it helps kill the chlamydia pneumoniae they think underlies their autoimmune condition. They say it helps (post Herx). But I have no personal knowledge or suspicion as to whether a PANS kid would benefit. I'd love to find out though if anybody tries it.

You absorb calories through your gut, which is teaming with microbes. It's the microbes that regulate body fat. Remember all that news about bacteria contributing to obesity a few years back? The reverse is also true. You probably can get skinny by changing your gut bacteria too. Or, to quote Time magazine in 2009: "That suggests that factors like gut microbes, which scientists traditionally would not think exerted influence on genes, may have a surprisingly powerful effect, changing how a body's genes would normally control the way the body digests food and breaks it down into energy. It makes sense, when you consider that the great majority of the cells and genes in the typical human body belong to the microbiota." I'd look into this angle in addition to whatever else you're doing.

First, a curiosity of mine. I hear about sinus problems on this board but in the back of my mind I wonder how many of them are actually migraines. "It's not uncommon for a migraine to be associated with a stuffed nose or a runny nose. A migraine headache has a discharge from the nose that is clear and it isn't accompanied by a fever. " -Dr. Larry Newman, Director of The Headache Institute at St. Luke's Roosevelt Hospital in New York City As for your question, we had T&A (as they're known) for our dd who was 6 at the time and before we were PANDAS-aware. We marveled at how it seemed to have solved all of the many disparate issues we were having with her. She started her vocal tic again a few months ago after a respiratory illness (w/chest cough) and some of the anxiety but since the T&A, we have't had any of the screaming tantrums, oppositional behaviors, and things like that. I had to talk myself in to the operation because I use to whorl in the pharmaceutical industry and I saw first-hand how biased a lot of medical information can be. The T&A benefits are real, though, owing to the removal of major reservoirs of bacteria (the removed tissues) but also the greatly improved deep sleep, which is SUCH a potent healer.

So the daughters are yes and the sons no?

Are you looking for something technical from somebody like Sarkis Mazmainian or are you looking for starter info that's suitable for smart lay-readers like this article in the New Yorker? http://www.newyorker.com/reporting/2012/10/22/121022fa_fact_specter

If you're looking to prevent antibiotic-associated diarrhea, the evidence seems more available for Lactobacillus rhamnosus GG and Saccharomyces boulardii (yeast) some say 5 billion CFU/day. Some say 10 billion. BUT Lactobacillus reuteri, Lactobacillus casei, Lactobacillus paracasei, Bifidobacteria species have also shown benefit. More species isn't necessarily better and neither is a higher dose. Very interesting benefits on preventing allergies, asthma, inflammatory bowel diseases, and other autoimmune diseases (in humans and animal models) have been found with Acinetobacter lwoffi, Lactococcus lactis, Bacteroides fragilis, and even Helicobacter pylori, among others. We're still learning. Probiotics should be given an hour or two after the antibiotic. Personally, if the child has had a decent inoculation of good bacteria since birth--that is, she's born vaginally as opposed to C-section, she's been breastfed for at least 6 months, she took no antibiotics in the first year or two of life, she took no Tylenol in the first year of life--then I'd wager that giving her just the sugars (oligosaccharides, actually) that spur growth of health-promoting bacteria may be enough. Adding the oligosaccharides FOS and GOS to meals/drinks is a very easy way to help heal the gut of someone on antibiotics. How often antibiotics are given is another consideration. For example, if you clear cut a forest, roughly the same types of species will re-grow. If you keep doing it, however, you'll start getting many different species repopulating and altering the delicate balance of the ecosystem. Same with guts, bacteria, and antibiotics. The gut is very much an ecosystem, which is exactly how we have to think about it. In an ecosystem, all critters interact with their environment and often with each other. They are not all created equal, however. Some animals are considered "keystone species," which have a disproportionately large effect on the environment relative to its abundance. An example is the jaguar, whose numbers are very few but since it has a widely varied diet, it balances the mammalian jungle ecosystem by consuming 87 different species of prey. In the gut, helminths (worms) may represent a keystone species. In the presence of the "right" ones, beneficial bacteria thrive further benefitting the host. But that's a story for another time...

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.

There are 14 "chapters" to get through.

I've noticed that many of the members on this forum are female. You guys might therefore be particularly interested in the YouTube videos of Dr. Gregor Reid at the University of Western Ontario on probiotics and female health. He's one of the big-wigs in the field of probiotics and can clear myth from fact when discussing probiotics in the context of antibiotic use, vaginal bacteriosis, preterm birth, yeast infections, etc. I should mention he's also something of a salesman because the beneficial strains of lactobacilli he co-discovered in the 1980's are commercially available. Despite this potential conflict of interest, his lectures are very valuable for us.

We haven't seen any OCD yet either, just vocal tics, which Benadryl helps. I recall Dr. Swedo saying something about OCD and/or tics can occur. On her radio interview, maybe? The separation anxiety, oppositional behaviors/tantrums mostly went away with tonsillectomy/adenoidectomy. The insomnia was helped a lot by T&A, but then we had to add melatonin to really fix it. Here's the link to the radio interview http://www.blogtalkradio.com/thecoffeeklatch/2011/02/10/dr-susan-swedo--nimh

What?! Are we reading the same studies? What are your references for "Probiotics for yeast will really only help the gut - they don't get into the blood and travel to the nose"? Many results show certain strains of probiotics and prebiotics helping in every corner of the body, so to speak, including nasal allergies, lung infections, skin eczema, brain hormone imbalances, blood pressure, you name it. For this particular question, I'd look into alternate causes of stuffy noses like non-allergic rhinitis and laryngeal reflux.

Yup. See also the nice work done on zinc and diabetes at Oregon State's Linus Pauling Institute. ZINC DEFICIENCY MECHANISM LINKED TO AGING, MULTIPLE DISEASES http://oregonstate.edu/ua/ncs/archives/2012/oct/zinc-deficiency-mechanism-linked-aging-multiple-diseases

Let's keep antibiotics in perspective. Many of them have potent and under-appreciated anti-inflammatory effects, which can be compensated for by other anti-inflammatory treatments (NSAIDs, probiotics, berries, cocoa, tea, fish oil, sleep, etc.) And they also can lead to resistance and dysbiosis, which can detract from their usefulness. Maybe, like rowing mom suggested, you've compensated for their actions by other means so they're no longer necessary?

We didn't do antibiotics before or after T&A and the surgery alone improved her SO much. Just one person's experience...

H. pylori can live on tonsils too. Has she had a tonsillectomy? Green tea (not decaf or w/milk) and certain strains of probiotics can control H. pylori and improve its eradication with antibiotics. A simple search of PubMed should reveal which ones.

How interesting. It seems like you're not the only one to question the link, Linda. It looks like "the field" is wrestling with case reports hinting of allergies protecting against the severity of autoimmune diseases and autoimmune diseases protecting against allergies. (However, certain autoimmune diseases are associated with allergies.) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2432093/

Fluconazole (Diflucan) may lower excess cortisol, which can have behavioral effects. Candida overgrowth can be a factor in autoimmune polyglandular syndrome (like Schmidt syndrome). How often do you have to put him on Diflucan?

Sounds to me like you should look into post-streptococcal glomerulonephritis with cerebral vasculitits. It sounds scary, but if (HUGE "IF") it is this/these, the prognosis is not bad. I assume you're looking for a good pediatric neurologist? See http://cdn.intechopen.com/pdfs/22828/InTech-Atypical_clinical_manifestations_of_acute_poststreptococcal_glomerulonephritis.pdf

I hear you, infuriating, isn't it? P.S. I love your restraint of language. It's the the mark of someone willing to set aside their rage to help their child.

Scroll down to the 7th powerpoint slide. (I couldn't insert my copy of the image). http://www.faqs.org/sec-filings/120904/CORONADO-BIOSCIENCES-INC_8-K/d405471dex991.htm

Or even sooner. We know that a mother's inflammation and antibody repertoire while pregnant greatly affects the neural dysfunction of her offspring with boys being more susceptible than girls in utero. Links have already been found between autism, allergies, asthma and maternal rheumatoid arthritis, celiac disease, type 1 diabetes, and Hashimoto’s. It's just a matter of time before someone links an autoimmune disease (if not AS specifically) with PANDAS. We've got our own link at my house. The bad news is more cases of PANDAS are inevitable. The good news is maybe the heightened awareness will intensify research. Is the PANDAS network actually helping fund anyone yet? I should check that out...

If you're tired of my yadda-yadda...there's a neat video by Homer Boushey, MD, an asthma expert at University of California, San Francisco.