ThinkGutBacteria

I came to the hygiene hypothesis/importance of exposure to certain microbes until well after PANDAS. (Interesting assumption, though.) I discovered the fact that insufficient exposure to certain microbes is critical for proper immune function after it was too late. Remember, the window for exposure is in utero or first year of life. Anyway, we seem to be managing (so far, knock wood) with probiotics/prebiotics alone. No antibiotics, IVIG, coQ10, etc., yet. Although, I'm glad to know they're there if/when required. Probiotics are not sufficient to cure but they may be sufficient to prevent.

RIGHT! Given the context of this discussion board, we definitely can't overlook autoimmune-driven arthritis (like AS)! See also: Out of joint: new insights into the role of commensal gut bacteria in autoimmune arthritis http://www.nature.com/mi/journal/v3/n6/full/mi201056a.html

We've had good results with chamomile tea. Like lemon balm, chamomile is a naturally good source of luteolin, a flavonoid that reduces brain inflammation and may improve motor function (read: tics).

A 6-minute lecture on anxiety, appetite, and other familiar behaviors that can be explained by gut bacteria. They've corrected the communication deficit in autism by adding the bacterium, Bacteroides fragilis. Lecturer: Elaine Hsiao, a post-doc at Cal Tech.

Beware-joint damage does not equal pain. Most people show signs of the same joint wear-and-tear as people with joint pain, yet they have no pain. There was a paper published in 1994 by a doctor (M. Jensen) and her colleagues in the New England Journal of Medicine. They performed MRIs on about 98 people who had no history of back pain. The researchers found normal discs in only 36% of the people. Everyone else had bulges, herniations of various kinds, and so on, and yet no pain. That's the kind of information that doctors in this country totally ignore. Instead, I recommend that you look at your SLEEP. If you have joint pain, cold hands and feet, low blood pressure, fatigue, you might have something called upper-airway resistance syndrome. (http://www.caring.com/articles/uars-may-be-why-you-are-so-tired) We heal our bodies in deep sleep, which you don't get if you have UARS or sleep apnea, or otherwise can't breathe easily. Even if you've been in bed 8 hours/night and think you sleep fine.

Eesh. Is she sleeping better? Less anxious or aggressive, anything like that?

I had a site I preferred for homeopathic interactions, side effects, etc and I lost it in a computer crash. Now I cannot for the life of me remember who it was. Do you have a favorite site? I just found this one again, I think this maybe was the one I lost: http://www.umm.edu/altmed/ For drugs, I try to find its full prescribing information or its monograph and get the info from the horse's mouth. Never go to a drug's website. All of the useful information about the drug is available from non-commercial sources. A drug website's primary mission is to deliver its marketing messages. If it's a dot com, they're just trying to sell you something. Arthitis.com, for example is a Pfizer website trying to sell you their pain drug, it is not trying to educate you about arthritis. If it was, it would have to tell you that, as an NSAID, it relieves pain as well as--not better than--any other NSAID, like Advil, and confers no safety advantage. Here's an example of a full PI (Augmentin's) from the FDA. http://www.accessdata.fda.gov/drugsatfda_docs/label/2008/050575s037550597s044050725s025050726s019lbl.pdf The Full Prescribing Information (PI) is a summary of the clinical trial data about a drug. Drug companies are not obligated to report ALL of a drug's trial data to healthcare providers or the public (which is criminal), but at least there's no marketing crap in it.

I hate WebMD, but that information is probably correct and it was a very good idea of yours to post it. WebMD pulls info like that from reliable-enough sources like NIH and large professional associations. I used to work at place like WebMD. They're very biased to Big Pharma's marketing messages because that's who butters their bread, so to speak.

SF Mom, I love the idea of butyrate. That's gotta help. What supp do you use?

Terms can get confusing but glutamine is food for cells of the intestine. Much of it gets metabolized into things like citrulline, proline, alanine, glycine, and arginine. It does seem to raise gut glutathione levels in rodent models (studies on mice and rats). As for studies in humans, some show it can improve the outcome of gut infections, ostensibly by improving leaky gut caused by microbe toxins, although studies in people with Crohn's disease (a permanent gut infection, of sorts) have been disappointing. Glutamine's efficacy seems to depend on the disease you're treating.

Just remember it has a bit of caffeine in it too. (The decaf process removes some of tea's polyphenols and would likely reduce the benefit, so I don't recommend decaf. Or milk, for that matter. Casein proteins bind up many of tea's healthful polyphenols too. Honey's okay, thank goodness.)

Let look at a case of "genetic predisposition" to asthma, which many consider to be an allergic disease. Humans have a certain receptor on a particular kind of T cell (immune cell) that helps drive allergy-style inflammation. The receptor is called TIM-1. People make various versions of TIM-1, some versions predispose them to getting asthma. Some strongly protect them from getting asthma. As it turns out, scientists at Stanford University found ten years ago that the variant strongly associated with protection is also a really good receptor for the hepatitis A virus (HepA). Having this variety of the TIM-1 gene only protected people from getting asthma if they had been exposed to HepA. Epidemiologically, HepA infection is associated with a reduced risk of developing asthma and certain allergies, and because the incidence of HepA infection has been significantly reduced in industrialized countries over the past 30 years, the discovery of a genetic interaction between HAV and TIM-1 provides a nice example of molecular genetic evidence for the hygiene hypothesis. If you don't "buy" the hypothesis, how would you explain exposure to HepA protecting against asthma in people with the version of the TIM-1 gene that vigorously binds the virus? There are many many examples of this kind of evidence.

The hygiene theory fits this beautifully. There is no place with MORE asthma, for example, than inner cities, which are also typically crawling with "germs." But the whole hypothesis hinges on the TYPE of germ. There are NO traditional farm soil microbes in inner cities, for example. In fact, as soon as you urbanize an area, you see an uptick in allergy/asthma/autoimmune disease. I'm sure you can understand that the human body reacts differently to different germs, right? They're definitely not all created immunologically equal. Germs like measles will make you child (and mine) sick. Germs like Lactobacillus casei will prevent autoimmunity. Of course there are many other factors like vitamin D and genetic predisposition. These are all factored in.

Before I run to my little lecture, I wanted to make sure we all knew about this one... Green Tea Boosts Antibiotics for Superbugs Egyptian study finds drink increased effectiveness threefold Posted 3/31/08 MONDAY, March 31 (HealthDay News) -- Green tea can help antibiotics be three times more effective in fighting drug-resistant bacteria, even superbugs, according to a study by researchers at Alexandria University in Egypt. Green tea is common in Egypt, and it's likely that many people there drink it while taking antibiotics.Therefore, the researchers wanted to determine if green tea would decrease or increase the effectiveness of antibiotics or have no effect. "We tested green tea in combination with antibiotics against 28 disease-causing microorganisms belonging to two different classes," Dr Mervat Kaseem, of the university's pharmacy faculty, said in a prepared statement. "In every single case, green tea enhanced the bacteria-killing activity of the antibiotics. For example, the killing effect of chloramphenicol was 99.99 percent better when taken with green tea than when taken on its own in some circumstances." More at http://health.usnews.com/usnews/health/healthday/080331/green-tea-boosts-antibiotics-for-superbugs.htm

Neat, thanks! I find it utterly fascinating that bacteria a few inches behind your belly button can make you happy, sad, anxious, etc. Amazing. Truth really is stranger than fiction (maybe that's why politicians don't go near the stuff )

No one is suggesting you start infecting your kids with H. pylori, Toxoplasma gondii, Epstein Barr virus, or anything else, but you should know that allergies/asthma/IBD and autoimmune diseases result if they're not around during early childhood. It's all about timing. There's a small window of protection--in utero or first year or two of life. However, scientists in England have injected killed M. vaccae into adult cancer patients and have seen huge improvements in patients' sense of well being. What scientists are working on is finding the little bits of these organisms that confer protection and make THEM into therapies. Early results are promising.

Scientists in Colorado and the U.K. found exposure to a soil-dwelling bacteria, Mycobacterium vaccae, works as an antidepressant by stimulating the generation of serotonin and norepinephrine in the brain. More specifically, it induces the growth of neurons that produce those two compounds. (M. vaccae is in the same genus as Mycobacterium tuberculosis, the bacterium that causes tuberculosis, but it is not pathogenic.) Scientists in NY fed M. vaccae to mice, it stimulated growth of neurons and increased levels of serotonin and decreased levels of anxiety. "We found that mice fed live M. vaccae navigated the maze twice as fast and with less demonstrated anxiety behaviors as control mice", says Dorothy Matthews of The Sage Colleges in Troy, New York, who conducted the research with her colleague Susan Jenks. M. vaccae isn't found in the human gut, you have to continually ingest it by eating unwashed organic veggies, etc. I'm not sure if simply digging in soil (ie, gardening) would work. Maybe. I dug my girls a back-yard mud pit to play in last summer. I think I'll make it bigger this year.

In the meantime, I'd try buying a liquid melatonin preparation (we use this one with great success http://www.iherb.com/Natrol-Melatonin-Liquid-1-mg-2-fl-oz-60-ml/5294) and give her only 1 dropperful (1 milliliter, or 0.25 mg melatonin) about 20 minutes before bed. I squirt it into my dd's blueberry tea with honey. I guarantee fixing her sleep will take some of the edge off of her anxiety. (I assume you've done common-sense things like no media of any kind an hour before bed, no caffeine after noon, etc.)

(Sorry about the typo in the topic title) As a convert to the notion that sleep deprivation GREATLY affects PANS-related behaviors like anxiety, aggression, attention, etc., I'm a frequent visitor to the website of a Johns Hopkins/Columbia University-trained ear-nose-throat/sleep physician who practices complementary medicine here in NY. His name is Dr. Steven Y. Park. My wife refers to him as my "boyfriend." She thinks she's funny. Anyway, on Tuesdays Dr. Park hosts interviews with sleep experts. Tonight he's interviewing "Dr. Karen Bonuck about her landmark research linking snoring in infants and higher risk for developmental delays later in life. " It's a must-hear because parents, in general, have no idea about the neurological/emotional repercussions of a child deprived of deep, slow-wave sleep. You have to register on his website to listen, but--I can attest--it's very brief, free, you never get spam (only the occasional email about future lectures, which you can unsubscribe from easily and effectively), he doesn't sell your info, he's not selling anything (except his e-book on his main website). Believe me, I'd be long gone if he did any of that stuff. It's like he's trying to simply educate people. Shocking, I know. Anyway, if you're interested, register (then listen online tonight at 8:00 EST) at http://doctorstevenpark.com/expert-interview-dr-karen-bonuck-on-pediatric-sleep-breathing-problems-and-developmental-problems

Isn't there some kind of PANS-specific treatment database we could start. With so many people trying so many things, it's hard to keep 'em all straight.

Thank you so much for this article. It was very good but... unfortunately, leaves me with the impression that: 1. My son (who started on antibiotics at 4 months of age and has been on them most of his life) had a complete upset of his microbiome early on. 2. Replacing the lost bacteria is a great idea, but we have no idea exactly what type of bacteria needs to be replaced nor in what amount. 3. The effects of antibiotics are systemic, but bacteria replacement through oral probiotics will likely not replace the bacteria in, say, his ears or sinuses (though the comment in the article about transferring ear wax from the non-infected ear to the infected ear is very intresting!). 4. Mulitple strains of probiotics are not necessarily better than singe strains, since we have no idea what is missing and we don't know if the multiple strains work in concert or if they could have some sort of negative interactive effect. Now - I recognize that the article was fairly conservative as it was written in the New Yorker, so I am sure they would not go out on a limb to promote anything that could not be backed up 100% by evidence. So, my question is... given the scientific evidence we have now... what is the best thing I can do for my immune-deficient, PANDAS-prone 15 year old son probiotically, as he is on 3 antibiotics now and may very well be on at least one antibiotic for the rest of his life. He does take probiotics, but I feel like I am guessing at this more than anything. Thanks so much for your insights - I really enjoy your posts. Oh boy, it's frustrating as heck trying to turn all of these tiny scraps and hints into anything useful for our kids! The only other avenues to explore, or at least know about, include helminthic therapy, fecal transplant (also called bacteriotherapy), and prebiotics. Do you know about those already? The best book I read on the topic of gut health and chronic disease is by Moises Velasquez-Manoff called "An Epidemic of Absence" Here's a review of it in the NY Times: http://www.nytimes.com/2012/09/11/science/an-epidemic-of-absence-review-seeing-hygiene-as-driver-of-disease.html?_r=0 An interesting source of prebiotic is a kind of beneficial-bacteria-promoting fiber sold by King Arthur (http://www.kingarthurflour.com/shop/items/hi-maize-fiber-12-oz) They also sell the fiber pre-blended with white flour. An interesting website on an interesting class of prebiotic is here http://en.wikipedia.org/wiki/Mannan_Oligosaccharide_based_nutritional_supplements_(MOS) You should also know about the "poopy lab" of Dr. Emma Allen-Vercoe http://www.uoguelph.ca/theportico/bacteria/ More later. I have to be productive in another facet of my life...

I just checked the Florastor monograph (available on Florastor.ca (not .com) under the Healthcare Professional link. Beyond the obvious idea that the drug may kill off the probiotic, there's no mention of any negative interaction with antifungal drugs. I'd say take it a few hours apart from the antifungal and you'd be fine. There have actually been many trials using florastor along with antibiotics, so you can try looking up one of those studies to see when, relative to the drug, the probiotic was given. Keep in mind, when you take a drug it gets absorbed, distributed throughout the body, metabolized, and excreted. The time it takes for half of it to leave your system is called its half-life, which can range fairly widely from drug to drug and from person to person. So the amount of drug fluctuates. To minimize this, doctors tell you to space out your dosing evenly (like take every 8 hours, or whatever). Still, the amount of drug will peak a certain time after taking it so I'd take the probiotic when the amount of antifungal is at its lowest level, maybe an hour or so before the next dose of antifungal. Did that make any sense? Sorry, I'm really spent today. Best of luck. Here's an interesting reference I was scanning... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2868213/

I'd like some clarity around histamine, which in addition to its role in allergies and ulcers is also apparently a potent brain chemical (neurotransmitter). Specifically, I'd like to learn more about the histamine 3 receptor (histamine has 4 kinds of receptors). H3Rs live in brain cells where they're involved in sleep, appetite, and mood (sound familiar??) Blocking H3 receptors enhance the release of neurotransmitters such as histamine, acetylcholine, dopamine, and norepinephrine, among others. This is going to prove an important receptor in the pathology of PANS, I predict.

Now THIS is cool. Ingestion of Lactobacillus strain regulates emotional behavior and central GABA receptor expression in a mouse via the vagus nerve. http://www.ncbi.nlm.nih.gov/pubmed/21876150

Not specifically. They can see inflammed intestines and things like celiac, Crohn's, and ulcerative colitis, of course--all of which have what's called intestinal barrier dysfunction (technical term for leaky gut). In the lab, leaky gut is often measured by "transepithelial electrical resistance" if you wanted to look that up. Inflammation of the GI tract from bacterial or fungal toxins erode "tight junctions" between the gut's epithelial cells which lets substances like bacteria, bile salts, and enzymes into the underlying tissue and bloodstream of the host. In science talk: "Tight junctions establish a polarity of the epithelial cell layer by forming a seal between adjacent epithelial cells, thereby separating the luminal compartment from the basolateral surface (11)." Treatment with probiotic bacteria, prebiotics, breast milk, a short-chain fatty acid called butyrate, and probably other things like tea may prevent or reverse increased permeability of the epithelium and block pathogens. But now we're getting into terms like "gut-brain axis," which describes the concept where bacterial (or their products) act through the vagus nerve to affect behavior.