Recap on the 2017 SIBO Symposium - Day One

Mark Pimentel, MD - SIBO Overview

• Clinicians worked on creating a standard for breath tests - 8-12hrs of fasting, prep diet, no promotility agents for a WEEK, 10g lactulose. "North American consensus on breath testing" on PubMed for free.
• at least 60% of IBS-D is SIBO
• stress doesn't cause SIBO but makes bowel issues worse and reduces the MMC (migratory motor complex).
• IBSChek - high vinculin antibodies means many treatments will be unsuccessful (incl Rif/Neo). High = 3.0
• IBSDetex - doesn't give raw data like IBSChek, it controls for 1, they use a ratio but theres a problem with a formula (not sure what this means other than "use my test" :)
• Methane is only detectable on breath test when it's at 1 million parts per mil. Methane causes constipation at 10,000 parts per mil.
• If you don't respond to Rifaximin the first round you shouldn't use it anymore, it won't suddenly start working. You need to try something else. Also if you rebound quickly after Rifaximin you need to focus on underlying cause (adhesions).
• SIBO is "Changes in flow in the gut causes the wrong bacteria to overgrow in the wrong place". IBS is a disease. SIBO is caused by another disease.
• They are doing the testing for Hydrogen Sulfide at Cedar-Sinai but still don't know what to do with the results so they are reluctant to give them out to providers/patients.
• Elemental diet is most effective.

Melanie Keller, ND - Risk Factors and Environmental Toxins

Risk Factors (essentially EVERYTHING!)

• Gestation/birth/infancy - traumatic birth, condition of mother, abx use as infant, length of hospital stay
• Procedures/surgery - tolerance of anesthesia, what type of procedures have they had done, sinuses, chronic infections, repair of altered anatomy, dental procedures, abdominal procedures
• Injuries - most notably head injuries, abdominal traumas
• Travel - food poisoning
• Infections - various parasites and bacteria
• Dental Hygiene - wisdom teeth extractions, dry socket, all four removed at once, root canals can never be sterilized so may never heal perhaps in greater than 99% of procedures, implants, veneers, amalgam filling removals, carbonated beverages (turns to carbonic acid in your mouth making it more acidic) - must you a straw then rinse after, apple cider vinegar
• Other - gastric acid, medications, eating disorders (why?), IBD with strictures, connective tissue issues, methylation issues (MTHFR and FUT2)
• Environment - US manufactures 5 trillion chemical compounds, fatal food allergies have increased over 50% in recent years, increase in diabetes and obesity related to environment, many toxins in our environment that have a negative lasting impact on digestion
• Q&A - MMC starts in stomach, go to PHCapsule.com to find where you can get a Heidelberg test - need a referral from provider,  

Mark Pimentel, MD -  Methane and Autoimmunity 

• Food poisoning is NOT related to Methane
• Methane comes from environment and family. If you live in impoverished areas where calories are either hard to come by or hard to extract from low quality foods then methane is protective.
• Methane is not an overgrowth, it's a bloom and may NOT be SIBO (WHAT??)
• The older you get the more likely you are to have methane.
• Methane slows transit time.
• Methane makes you hyperglycemic, impacting both blood sugar and insulin (there is data to support this).
• Methane predictive of obesity. Those who don't lose weight after weight loss surgery may have methane complicating picture.
• Combination therapy (Rif/Neo) does not work well for methane, it often comes back quickly and you can't keep people on therapy two weeks out of every month.
• Methane is not an overgrowth, it's a bloom, outgrowing other bacteria. We don't know how much is in colon and how much is in small bowel. Methane is not dependent on lactulose so it doesn't always go up on the test. It may be mostly in the colon.
• F420 enzyme allows M. Smithii to take hydrogen and make methane, lovastatin blocks this enzyme. Methane production drops in days. Hydrogen bugs the get sick and die from the excess of hydrogen.
• Syn-10 (the lovastatin drug in trial) stays in gut and is not absorbed so none of the same lovastatin side effects. Red Yeast Rice is absorbed so likely not effective the same way.
• C-Diff causes post infectious IBS.
• You can get SIBO via FMT
• Fasting helps, meal spacing necessary
• Methane + high fat diet may be recipe for weight gain as methane makes body more efficient with harvesting calories.
• If you have post infectious IBS, NEVER get food poisoning again. Always travel with Rifaximin and take 1/2 a pill with meals (IMO herbals are just as effective and so much less expensive!).
• Scleraderma the only other autoimmune condition that seems to be linked to high levels of vinculin antibodies.
• Allicin works temporarily for methane.
• Phase 3 research for Syn-10 starts in Sept
• Higher vinculin antibodies predict lack of response to treatment with Rif/Neo (Pimentel stated 3 on the vinculin antibodies is high).
• M. Smithii can use acid and ammonia to make methane so keep those lower in diet (ie lemon juice in water, ACV).
• In the process of investigating separate diet for SIBO and Methane.
• Norovirus can cause IBS even though it doesn't release Cdt-B, they are not sure why.
• Cipro does work for SIBO but generally only the first time and then the bacteria becomes resistant and you take a severe hit to the microbiome.

Natalie Gustafson, PharmD - LDN and LDE

Not much new here just explanations of risks and mechanisms of LDN and LDE

• LDN must be taken on an empty stomach
• LDN can be taken at night if it interrupts with sleep
• Always ask compounding pharmacy what kind of filler they use
• LDN upregulates Toll Like Receptor 4 so helps decrease inflammation
• LDE at 50mg does not appear to impact the microbiome
• LDE does have the very rare potential of QT elongation which increases cardiovascular risk
• LDE does block certain liver enzymes so make sure the check crossreactivity.  Will make berberine less effective.
• Enteric coating contains phalates so most pharmacies don't use this coating because they have to have special equipment and ventilation (I don't think she meant all enteric coatings are made from phalates)

Melanie Keller, ND - Managing Treatment Failures in SIBO, IBS & IBD

Many, many rabbit holes in this talk. Dr. Keller clearly deals with SIBO cases that require a much deeper dive into the body to resolve. My guess is is that most people with SIBO do not require such a deep investigation to heal.

• Step one - no more supplements.  She is seeing correlation that certain nutrients feed certain bacteria and if you are low there is a reason. If you simply supplement you could just be feeding the overgrowth of bacteria.
• Test for stomach acid levels - she sees people with both low and high stomach acid.  Both cause issues with digestion.  She believes that people with high stomach acid are actually more sensitive to foods than those with low. (link above to PHCapsule.com to find a Heidelberg test office near you).
• Her theory is that high baseline methane could be in the stomach. H.Pylori used to be erradicated with two medications, now it takes quadruple therapy. Is there some sort of correlation??
• There is a complex communication happening between bacteria, hormones, enzymes, etc. that we don't quite understand yet. Research currently being done.
• Hormones are an important component, need to make sure adequate growth hormone, not too much sex hormone binding globulin, etc.
• Amalgam filling removal - does not like to treat these patients as they don't do well, don't seem to recover.
• She utilizes www.scorecard.org to determine common pollutants in people's area.
• Using Strategene can help answer why some people do well with some things and not others.  She looks at methylation pathways of a person to determine which pharmaceuticals may work best.

I listened to this one twice and still just can even begin to grasp how she noodles all this stuff out.  Dr. Keller is also very interesting in environmental toxins and how they impact the body.  For example, research has shown Agent Orange acts as a xeno-estrogens and caused a rise in endometriosis for women and diabetes for men.  Ulcerative Colitis and Crohn's appear to have doubled from 1996 to 2006.

Next steps for dealing with methane while not actively killing....

While I wait for my antibodies to clear so my nerves can heal and restore function to my migratory motor complex in the small intestine I need to do something to keep the methane at bay.  I tried a 90 day protocol and that clearly didn't do much at all.  So what to do??  I don't want to dive into more killing so I may go back to the (possible) methane inhibitors.

Methane inhibitors
Red Yeast Rice - we know that Dr. Pimental is testing a lovastatin type drug to see if it inhibits methane production.  See here for information, scroll to bottom.  Red Yeast Rice does contain a natural form of lovastatin. I've used it in the past and was able to keep my methane numbers mostly in the single digits.  Once I got them to a certain level they wouldn't go lower but with Primary SIBO (aka the food poisoning induced autoimmune variety), getting the numbers down and maintaining them seems better than having them go up and down. And, it made goats fart less so why not us :) 

"At the genus level, the predominant archaea in the rumen of goats was Methanobrevibacter, 

which was significantly inhibited with the supplementation of red yeast rice. 

In conclusion, red yeast rice is a potential feed ingredient for mitigation of 

enteric methane emissions of goats." 
https://www.ncbi.nlm.nih.gov/pubmed/27467559

The link above is to a brand I used in the past. I might try a different brand this go 'round.

Ideal Bowel Support - this is a probiotic containing only 

Lactobacillus Plantarum which according to Chris Kresser can degrade methane.  I quite literally have a shelf of this stuff in my refrigerator.  Can't hurt!

Atrantil - This seemed so gimmicky when it first came out.  And there were so many "worked like a charm" and "didn't do squat" type comments on message boards that I really was skeptical. But I listened to Dr. Brown on a few recent podcasts and given my current situation (anti-vinculin antibodies negatively impacting motility) I thought I should at least try it.  It made me feel better, lighter.  I don't know how else to explain it.  I should say that I did use it after fasting so I was already feeling lighter and I do have most my digestive symptoms under control but wouldn't it be nice to be able to expand my diet without the usual repercussions. I think yes!  So I'm going to add it in while I focus on boosting motility and supporting healing.

Prokinetics
Cause if things aren't moving you are just generally screwed.  In hindsight I would have started taking these the second I learned I had SIBO.  Keeping things moving through the GI tract is the easiest way to prevent more overgrowth (in my opinion).  And note, not all of these are actual prokinetics, some have a more laxative effect, I realize that.  Slowing anywhere in the GI is just not good, makes you feel toxic, sluggish and ornery.
  
LDN - Low dose Naltrexone, although it really doesn't seem to actually have a prokinetic effect much if at all.  For those with Primary SIBO, LDE (low dose Erythromycin 50mg at bedtime) or Resolor (Prucalopride) seem to be the prescription of choice.  I don't tolerate Resolor because it has a teeny tiny amount of lactose.  Maybe you are luckier than I and tolerate dairy. Resolor is available through Canadian pharmacies.  I may ask for a script for LDE the next time I'm in office but I just hate the idea of more antibiotics even though it is a minidose. So for now I continue on LDN since it's beneficial for autoimmune issues.

Motilpro - Taken at bedtime, helps stimulate the cleansing waves of the small intestine at night.  In the beginning of my treatment it was recommended to take between breakfast and lunch as well but I don't really eat before lunch so I just wait until bedtime. Sometimes I take Ginger capsules in between breakfast and lunch.  The stuff is mega ginger burntastic so make sure to swallow it down with a LOT of water about a 1/2 hour before you actually go to bed.  

Vagal Tone - This shows some promise.  It was recommended by my ND but sadly I am reactive to the chamomile and it gives me a headache within seconds of application. Ugh! Similar to Iberogast in that you use it with meals and at bedtime, only it's external, apply a tiny dab on your occiput.

Magnesium - Most people recommend Magnesium citrate because it's not absorbed well into the system so does the trick. But it's acidic and can burn on the way out. Yikes!  Oxide is also not absorbed well and is not acidic, but I like a blend, that way your body can use some of the more absorbable forms and the rest can do it's job of pulling water into the colon and flushing the system.  I take it at dinner and bedtime so it can go to work in the evening and overnight.

Triphala - My new love.  LOL!  I used to swear this stuff did nothing but made me super constipated (and frustrated).  Turns out you just need to keep increasing to find your optimal dose.  I take 4 capsules at bedtime unless I've indulged and then I take a couple extra. Carbs and nuts do nothing but stop me up but oh how I love the taste of them!

I used Iberogast for a while but it started to not sit well.  It was the chamomile. Now the company has been sold to Bayer and is either being reformulated or completely taken off the market.  Either way pretty sad since I know it's used by many. I also try to use bitters before meals but got out of the habit and now forget a lot of the time.  These things can have a positive impact on motility as well.

Most of us have heard of the physical things we can do to stimulate the vagus nerve.  The vagus nerve stimulates the migratory motor complex so it's important that it's strong and active.  According to Dr. Kharrazian there is (vigorous) gargling, gagging and singing.  I also know from yoga that breathing stimulates the vagus nerve, most notably deep belly breaths followed by restricting and extending the exhale. It's your exhale that stimulate the parasympathic response. It's easiest to do this lying down.

Gut and Liver Support
Zinc Carnosine and L-Glutamine.  That's really all I have found that isn't mucilaginous and doesn't feeds the darned bugs.  I capsule up my own Glutamine because it's cheaper and I can avoid the fillers.  A lot of people drink it in water and it supposedly helps with sugar cravings, I just never liked doing it that way.  I recently added in a small dose of copper when I take extra zinc, apparently you are supposed to keep them balanced and not take zinc longterm on it's own.  Don't ask me where I read this, I cannot recall.

I always taking some sort of liver support because your liver takes the brunt of filtering whatever leaks through the intestinal wall.  If we are permeable and/or killing, your liver could use some assistance cleaning all that garbage out of the blood stream.  I've taken everything from plain Milk Thistle to ayurvedic formulas to herbal combinations.  I rotate formulas. 

Soil based probiotics remain my protocol (I would call it "my stack" but that seems really weird for some reason!).  I still take both PrescriptAssist and MegaSpore. I've done so much killing since my initial diagnosis that I feel it's necessary to support the microbiome in whatever way I can.  

Nerve Support
For those with Primary (autoimmune) SIBO, taking supplements that benefit nerve healing may be helpful.  It may not, who really knows.  I add Lion's Mane and Sunflower Lecithin to my hot chocolate and take Acetyl L-Carnitine in the morning. They talked about using Lion's Mane and Acetyl L-Carnitine at the SIBO Symposium a couple of years ago. 

The other thing I take that may or may not be of any help at all is Fibrenza.  My ND feels it may help remove antibodies in some way.  I have no idea how that would work but the idea of having something that scavenges the body seems good to me.



Please note - I do not make anything off these links I just included them for ease and examples.  All the links are products that I have used and companies I have purchased from.  Make your own decisions with your healthcare provider and buy from someone you trust.  Personally I don't like to buy supplements off Amazon unless I know it's coming straight from the company itself.  There are many rumors of counterfeit supplements out there.

MTHFR?

Skyped with Dr. Keller today.  Very funny, she popped up and said, "I feel totally unprepared, I don't have any lab results".  We are waiting for results on my ASI which should be in any day.  I knew they probably weren't going to be ready but wanted to talk anyway because I always have so many questions about what I should or shouldn't be doing.  The herbal protocols are somewhat easier to figure out and I feel like I can experiment with that on my own (to some extent) but there are other pieces I just can't wrap my head around.

Concerns I have: dysbiosis in my large intestine and my inability to support that given the fact that I cannot eat starch without getting C.  My last stool test showed my Butyrate was borderline low and my SCFA's were low.  Both of these things are necessary for a healthy large intestine.  She had concerns about this as well and said she thinks of me often because we have tried so many things without much result.  I find this oddly reassuring and disturbing.  I don't want to be the kind of case that a doctor has to ruminate about.  I want to be the easy fix, the success story, the happily ever after.  She's wondering about MTHFR and thinks we should test (you can do this specifically with a saliva test or through a more comprehensive 23andme.com and then have the results translated for you through a service such as Genetic Genie).  23andme is actually less expensive and you can a wealth of information (that I probably don't need! Who needs more to worry about?).  

She also wants me to consider a barium study to look for any anatomical abnormalities and/or adhesions from my c-section.  That sounds expensive!  My insurance will probably just apply it toward my astronomical deductible.  Which makes me wonder why I'm paying through the nose every month for coverage!

White rice and white potatoes are recommended to help introduce some starch but keep the fermentation potential low.  She thought I may need to add back in the LDE in addition to the LDN while my body gets used to the starch.  My digestion is feeling so good right now that I am a bit reluctant.

She asked about my Vit D levels because Dr. Weinstock has been researching LDN and found that it doesn't work optimally as a prokinetic unless you have enough Vitamin D on board.  Thankfully I just had mine tested and it's in the 50's so were were able to rule that out without more labs.

Another way to support my large intestine bacterial health would be probiotic enemas.  She recommended once every 3 days to see how it goes.  I have both PrescriptAssist and Lactoprime Plus on hand and she thought the PrescriptAssist would be best.  Sounds like fun!  I still think I should add a little resistant starch or some other prebiotic to feed them as well :)

I also had thyroid specific questions.  Why do I need to be on T3 when the issue I am having is not with lack of hormone but with my body's inability to convert from T4 to T3?  She says we need to get my temperatures regulated (they are all over the place) and then we can work to support conversion.  Okay, but ugh, I hate taking these little white pills.  She didn't have any concerns with occasional seaweed or iodine in my multi's which is a relief.  She also doesn't think I need to worry about TH1 and TH@ dominance.  If I react to one of the triggers then we'll figure it out. 

I asked about Glutamine powder and Liposomal Glutathione but she wants me to wait before adding anything else in.  She is also researching Glutathione to figure out which one she trusts the most.

Oh, and she said I could experiment with fermented foods again.  I've eaten them in past and didn't notice any issue so I'll try again.

30 minutes goes so quick but I always find it so helpful.

LDN

I've been on low dose Naltrexone (LDN) for several days now.  I started out at 1.5mg and have been tapering up, currently at 3mg at bedtime.  I was expecting difficulty sleeping and vivid dreams but have not experienced anything different than normal.  That's probably a good thing!  I've taken the low dose erythromycin (LDE) out of my nighttime routine.  My motility remains top notch.  I think (for me) the high fat, low carb diet definitely helps.  My gut  seems really happy as of late.  

Now if only I could figure out why I am running so darned hot.  My ND requested I start taking my temperature before I started my thyroid medicine and it's been in the high 99's to low 100's for probably 2 weeks.  Normally I run in the mid 97 range.  Not sure what the heck is going on unless it's my diet.  I started the thyroid meds a week ago and it hasn't really changed my body temp so not sure what to think.  I swear you could spend all day every day just trying to figure out what's going on with your body.  That's not really living however.

At least my gut is happy!

Hello Hashimoto's

You know how you go to one doctor and they give you an opinion and then you relay that opinion to another doctor and they don't openly disagree or contradict they just kind of politely nod.  That did NOT happen today.  When skype clicked on today Dr. Keller was ready to go.  When I said that my other ND blew off the thyroid stuff and said it was nothing to worry about she threw her arms up and made a WTF face :)  I love her.  I loved the honesty.  She has tiptoed around his recommendations in the past but this she could not leave alone.  So she is setting me up with a thyroid medication that I need to taper up and then back down over the course of 60 days and then we'll test again to see how my thyroid responded.  I also need to take my temperature several times a day.  You'd think there would be a device I could wear that would do this for me, but apparently not.

I have not been sticking to the AIP protocol but in light of recent information I think I need to give it another try.  She mentioned cross reactivity with millet, sorghum and rice so I guess those are out for the foreseeable future in addition to wheat.  Nuts and eggs are just so hard for me to give up.  And the spices :(   I never thought I could miss cumin or chili powder so much.

She is also setting me up with a ASI kit so I can test my adrenals.  I would love to do the carb challenge to see what happens with my insulin but I can't see any realistic way of eating 75 grams of carbs with lunch!  

She also agrees that I should switch from LDE to LDN in light of my thyroid stuff.  She doesn't think I'll have a problem with it since I sleep like a rock but she stills want me to taper up from 1.5mg to 3mg then to 4.5mg over the course of a week and a half.

On the bright side my Wellness Meats order showed up.  Who knew a bison liver was so tiny.  The beef livers I get are HUGE.  The bison liver fits in the palm of my hand.  It's got to be just a piece of the beef liver.  Can't wait for the weekend when we'll crack open the beef bacon, slice it up and fry it.  I don't eat pigs.  I had a pet pig who slept with me.  I just can't eat them.  I am most excited about the liverwurst.  It's full of offal which is supposed to be uber healthy and a really big part of healing your gut and nourishing your body.  Someday I might get up enough courage to make these but for now, I'll stick with my liverwurst.

There's always more to learn!

Went and saw my ND on Wednesday.  He dove right into treatment (visceral manipulation).  All my abdominal pulses were really sluggish.  My body is trying to starve out the infection/inflammation in my small intestine by reducing blood flow.  Not the most effective method.  My blood pressure has been really low in general.  I'm probably remembering wrong but when I was at the Chiropractor on Friday they measured it as 90 something over 50 something.  No wonder I've been feeling so bloody tired, rundown and stiff and sore.  My bloods not pumping!

Anyway, he made no mention of my recent labs.  Free T3 measured in at a whopping 1.5.  When I had it tested 18 months ago it was at 2.8.  My microsomal AB (antithyroid antibodies) came in high at 36.5.  Not way above the acceptable 35, but still of concern to me.  When I said, Hey wait, what about my thyroid tests, he said there was nothing to worry about.  He was more concerned that my Vit D was at 52, I usually keep it in the 80's.  He said not to worry about the thyroid, things would get better when my SIBO was gone.  He gave me NADH to help with my muscle stiffness and soreness.  Not sure I like that.  I want to know why I am crashing.  So I did some research when I got home and found this on Chris Kresser's site.  Gut issues lead to thyroid issues and the gut cannot heal when there are thyroid issues.  Great!  And then there's this all about low T3 and how it's caused by inflammation (check!), not eating enough carbs (check! that actually may have been from a separate article), and physiological distress (check!). "In emotional, psychological or physiological stress, the body will convert excess T4 to reverse T3 (rT3) as a means of conserving energy for healing and repair." - from the Low T3 article.  And of course, I have lots of reverse T3.  Ugh!  Supplementing with T3 doesn't seem to be a solution but he did mention LDN (low dose Naltrexone) would be beneficial.  2 birds, one stone - a prokinetic and thyroid support all in one.  So I emailed my ND and he called me in a script.  I had been taking LDE (low dose Erythromycin) but never really liked the idea of a low dose antibiotic.  Can't remember why I was taking LDE and not LDN but it really seems like I screwed myself there!

Oh, AND when I was rooting through my labs I came across my Urine Organix test that recommend I take more selenium, which I overlooked somehow, probably because I have had umpteen millions tests.  Selenium is necessary for the body to convert T4 into T3. See here.

I also scheduled an appointment with Dr. Keller on Tuesday to skype from NCNM SIBO Center.  I have lots of questions that my ND doesn't seem able to answer.

Then today I went in to get the results of my chiropractic reexam.  My heart rate variability score was pathetic and my chiropractor is worried about my adrenals.  A low HRV indicates dominance of the sympathetic response, the fight or flight side of the nervous system associated with stress, overtraining, and inflammation. - From Mark's Daily Apple.  She said it's an indication that cortisol is just coursing through my system.  Again, good explanation for not recovering from my workouts and feeling generally rundown.  She wants me to talk to my ND about getting this test.  It's all so overwhelming and I feel like I need to study in order to put it all together.

In the end I really have no complaints.  When my family talked about what we were grateful for at dinner the first thing I always say is "my health".  Because even though I have all this nasty crap in my gut, I am still a productive functioning human who can pretty much do anything I want.  It seems like so many people who have SIBO don't have access to good doctors who understand the proper treatment protocols, struggle with how they are going to pay for the doctors who don't take insurance, the herbals which aren't covered by insurance,  they have many symptoms most of which are far worse than mine and they also have other autoimmune or yeast or whatever issues that make the treatment of their SIBO even more difficult.  I'm a lucky girl, that's for sure.

Oh and I had Brazilian Fish Stew from The Zenbelly Cookbook for dinner.  Yep, life is good :)