Thank you, ibsgroup.org for the link to this Swedish study on fermented milk. I find the results to be a stunningly accurate reflection of what usually happens when someone starts drinking kefir or eating strong probiotic yogurt – they feel a little bit better right away, and then a few weeks later, all the benefits fade.

The effects of probiotic bacteria in IBS remain controversial….We could not detect a clearly positive effect of a fermented milk containing three probiotic bacteria on GI symptoms in IBS patients compared to the control treatment. However, a trend towards a more favorable effect during the first weeks was seen in the active group.

Its sheer speculation on my part at this point, but I’m leaning towards fermented dairy, particularly my short-lived obsession with kefir, as the culprit in this latest bout of misery that I’m experiencing. There are many things we don’t know about SIBO, but we do know that we suffer because we end up with gut bacteria in the wrong place. Regardless of what the entire cannon of altie dysbiosis literature has to say about the zoo within our digestive tracts, people with SIBO have large intestinal bacteria in our small intestine, and whether its “good” bacteria or “bad” bacteria is really irrelevant. Until we know more about the mechanics of why we end up with this locational snafu, its probably not the best idea for SIBO’ers to go putting bacteria down our gullets.

If you find that confusing, then its probably because the last time you were at my apartment/on my facebook page/having a conversation with me, I was obsessed with fermented milk, but we have to move on when things don’t work. Its still a mystery why I’m feeling so god awful lately, and there are probably several factors, Neomycin possibly being one of them. But I killed my kefir grains all the same.

A quick post to update…I finished up the Xifaxan on Monday. I have been taking Erythromycin at night before bed per Dr. Pimentel’s June 2009 study in Gastroenterology & Hepatology. My pharmacy only had 250 mg tablets, not the suspension of 50 mg specified in the study. There was an afternoon of discussion in the Yahoo group over dosage/tablet cutting, etc. and whether or not it would be safe or effective to take the Erythromycin in this way. Frustrated, I wrote to Dr. Pimentel to ask his take; he wrote back right away and said cutting the tablets in quarters should be just fine. (I had the wrong address before!)

I’m not feeling god awful anymore but it is really too early to tell what I’m feeling. I get really atypical results with the Xifaxan; feeling pretty crappy while I’m on it, then getting great relief but not in the same manner/timeframe as others I see posting about their experiences on ibsgroup and other places. Except for the course I took in August, which really knocked my socks off, and which the effects of dissipated nearly as rapidly as they came, I usually need a lot of time and strict diet after the course to feel really well. So not feeling so amazing right now is not really important, but not feeling terrible is a pretty good sign. I’m still eating Atkins, and dutifully taking the Erythromycin at night. I’m trying to stick to three or four meals a day, and not take snacks, so that the cleansing wave of the small intestine has time to do its thing. I’m still not taking probiotics in any form (I hope I didn’t confuse anyone when I mentioned my “kefir/yogurt fast” in the last post – I meant I was fasting FROM these foods.) I took a closer look at the digestive enzymes I’d been taking and they had 3 strains of “beneficial bacteria.” Luckily I had stopped those during the Xifaxan (mostly out of laziness!) I’m picking up some ox bile today and I will use that along with the HCl with meals.

I had a conversation with a friend last night who is studying nutrition about vitamin D. I had no idea but she had also been having the odd, migratory, musculo-skeletal, or “bony” pain that I have been suffering from. She had also experienced cramping and curling of the hands and fingers. This is something I experienced back in 2007/2008 whenever I would finish my workouts, but it would happen in my toes and feet. She was diagnosed with severe vitamin D deficiency this year and says that months of supplementation have nearly turned her life around. I’d already started supplementing only this week but I think I need to up my dosage a bit. I’m also looking into Calcium D-Glucarate. I could really use a good education in micronutrition. I tend to find vitamins and minerals about as confusing as digestive enzymes. Really, I suppose the only thing I do know a lot about is antibiotics. This is actually a great realization to have; one which makes me very happy. I stated in a recent post here that I was growing really uncomfortable with the amount of information I had collected and the amount of knowledge I had amassed about SIBO, since I seemed to be one of the only ones I was coming into contact with who had put in the hours doing the research. Lately however some of the discussions in the yahoo group are incredibly enlightening for me and I no longer feel like a walking encyclopedia of SIBO info. Because I long for knowledge and lately I’ve been able to gain so much, I feel I’ve become more open to some of the knowledge and information that has been out there all along that I may have glossed over or considered irrelevant for one reason or another. Which is a great thing really. It’s very nice to have one’s eyes opened. And I will update when I know more about how things are working for me.

1600 mg/day for 7 days. Each script for this stuff is a plane ticket to an exotic location I’m afraid I’ll never see.  Back on the ketogenic diet too.

Definitely at a low point. Feeling sick – bloating, body aches, brain fog. Spending a lot of time alone as I don’t feel well enough to go out as much as normal and my husband is working on a campaign. The weight is out of control. My body is still doing bizarre things and I get scared that I will never have a streak of good weeks/months again.

I’ve internet stalked some folks who I thought might have some good insight for the blog and the yahoo group and I’ve been ignored. I can’t blame them because its odd to be contacted privately and out of the blue but I would never turn someone down who asked for information like that. I wrote to Dr. Pimental with some questions on recurrance and I haven’t heard back; no surprise there. I’ve contacted some RDs in the area and what I’m hearing back about their knowledge of SIBO isn’t good news. Internet research turns up a lot of the same old forum posts/journal articles and even more dishearteningly, my own writings.

Then again, some things are going well. We have a new member in the Yahoo group and some enlightening discussions have been sparked. We’re possibly on the prowl for a doctor type that would hang out online and serve in an advisory capacity. I also managed to turn up a new-ish piece of research…for the second time. Its funny how bad brain fog can be. I posted the latest work of Dr. Pimentel (from June of this year) to the group back in August. Which means I obviously read it myself. However, it was all new to me when I reread it and found that he’s now recommending 50 mg of Erythromycin in a pediatric suspension as maintenance after antibiotic treatment for SIBO. Due to its pro-kinetic properties, E-mycin extended the time between symptom recurrence from 50 to 146 days. So I faxed the report to my doctor and I’ll be taking E-mycin after the Xifaxan.

And due to some of these enlightening discussions I just mentioned…I’m going to continue this yogurt/kefir fast. Its scary but after a gazillion recurrances with mere weeks in between, it cannot hurt.

I’ve taken enzymes off and on. I’m pretty sure that in theory, judging the effectiveness of digestive enzymes is at least a little less subjective than talking about which probiotics work. Even though we all have different bodies and different needs, I am fairly sure that some digestive enzymes just suck, and others are probably pretty good.

That being said, however, I feel even more “in the woods,” so to speak, when it comes to shopping for enzymes. I’ve probably done about zero research on them, and although I have tried a few brands here and there, I couldn’t say that any of them made an appreciable difference in my digestion. I haven’t taken any enzymes in a really long while, not because I don’t think I could benefit from them, but because I just haven’t known which ones to buy. Shopping for them seems kind of…well, like a crapshoot.

So I took a chance and went enzyme-shopping. I ended up with Ultra-Zyme by Nature’s Plus.  It has ox bile in it, which I suppose I should be taking anyway since that I no longer have a gall bladder. They smell terrible and I am supposed to take them twice a day, rather than just with a meal.

I’m continuing with the oregano oil and I’ve added HCl back into the routine. I’ll update with any major changes. In the meantime, if anyone has anything to say about digestive enzymes, I’m all ears.

Thank god.

If I thought for a second that the cupcake thing was really over I’d jump for joy but here in NYC I don’t think cupcake shops and parties are going anywhere. My friend Grace has the best quote ever about cupcakes: “what happened to eating a slice of cake on a plate with a fork like a civilized adult.” I say what happened to eating breakfast foods throughout the day, pretending we’re all weekend warriors on eternal sabbaticals, living out the everlasting brunch?

I have to admit that while I’m familiar with the GDPA’s work, I don’t frequent their site nearly often enough. Which is why I just found out about their Fall Patient Information Session, taking place this Saturday, October 3 at 10:00AM. The event is free and if you’re in Calgary this weekend you shouldn’t miss it. I’m nowhere close in NYC.  Here’s a more detailed flyer.  The transcripts from last year’s public forum are on the site too.

I’ve taken about an 8-day homemade kefir break and gone back to a more simplistic meat-and-eggs (and cheddar cheese) Atkins-style diet. I no longer feel like a zombie walking around but I’m still very tired. I’m going to start a new batch of kefir tonight (my grains have been sitting in milk for a week) as I just can’t buy into it being a black and white thing – as in kefir is really good or really bad for me….I think I just need to drink a much smaller amount each day.

I’m still having the body aches and pains. I haven’t gotten around to getting back on the VSL. I’ve been taking the peppermint oil and oregano oil again (natural anti-microbials) although this recent thread from some folks in the Rosacea community doesn’t give me much hope that these efforts will assist in bringing any lasting relief.  The bloating was pretty awful yesterday even though I ate above the line all day. I am about to start my cycle so I’m not freaking out about it. I’m even having small amounts of sugar today since the bloating is coming of its own free will. Myperiod = cravings for chocolate. I’m only human.

Still working through some complex thoughts on the constant return of digestive symptoms for those of us who experience great luck with Xifaxan. It really seems to be the norm, not the exception. I found a few old articles that I won’t even bother linking where Pimentel notes that patients can experience symptom relief for around 10 weeks. This is a fair enough number if 1) Xifaxan didn’t cost so much for off-label use and 2) it actually happened for most folks.

So I didn’t find any new research on reoccurance, but I did find a new Italian study on SIBO in children. Enjoy the abstract here.

So I wanted at some point to update this blog to document my foray into both the traditional diet via Nourishing Traditions and Weston Price, as well as my kitchen adventures with culturing my own dairy, in the way of making yogurt and kefir. I guess I have been so busy making yogurt and kefir and eating a traditional diet that I haven’t gotten around to it.

I think in my head the entry began something like “Radical diet changes often cure superficial problems. Low carb diets cure a lot of less superficial issues. SIBO specifically can be very successfully managed with a diet low in carbs; but isn’t there more out there than managing symptoms?” I need to get ahead of myself already, though, and answer that after months of slaving away in the kitchen I still do not know the answer, and I also have to ask if any of it is worth my time?

Sometime last winter I started making yogurt in a Euro-Cuisine that we picked up at Williams-Sonoma and making 24-hour yogurt (like the SCD yogurt) with my VSL#3DS. It is not very difficult to do, mostly bringing the milk to boil, letting it cool down again and washing out the pot are the hardest parts, and with the yogurt maker (which isn’t necessary equipment but seems to make things simple for someone not so detail-oriented like myself) I don’t have to worry much about timing or temperature at all. Over the months, its really difficult to say anything but the following blanket statement: I felt a small change. Honestly, I can’t say much more than that. I still reacted poorly to eating the wrong foods, sugars, starches, etc. but I felt that there was a small negative correlation between the amount of yogurt that I ate and the length of time I would suffer bad reactions such as bloating and distention, meaning that if I ate more yogurt then I suffered less.This is a small, but very good thing. I did find, however, that I would have to eat around 21 oz a day of the yogurt to get these results on a consistent basis. So I bought another 8 jars so that I could have 2 batches lagging each other.

I started doing more research on probiotics and I decided that it wasn’t such a bad idea to try experimenting with some other strains. If I had two batches going then I could have one VSL batch and another of a different kind, and I could eat one kind in the morning and one in the evening. I was already paying a staggering amount for the VSL so I didn’t want my experiment to turn into a money sinkhole. I used what was in my house already; Digestive Advantage IBS. I took it by mouth first and I felt that it was beneficial. For starters, I had more bowel regularity. That is not usually a big problem for me; if anything I have the occasional diarrhea. But I do get backed up for a day or two from time to time and in my experience these are dangerous times that can be the tipping point for getting my SIBO symptoms back. So Digestive Advantage was a big win. Then I bought some Culturelle, due to the studies I read on it. I even got a nice little book on probiotics for free from the labs that create the Lactobacillus GG strain. My first yogurt experiments were interesting; I made one batch with VSL only. I made a 2nd with Digestive Advantage and VSL. When the first one was done I made a 3rd batch with VSL and Culturelle. This 3rd batch was a little constipating. Then I realized that with all this probiotic mixing I might have competing strains and could be losing some of them even. So I stopped mixing VSL with the others. The result = kind of crappy tasting yogurt that didn’t seem to do much for me.

Back in time for a moment, I should also bring the reader up to speed on my antibiotic treatments. During this time, I had to go through two more rounds of Xifaxan; one in December of 2008 (this one gave me around four months of  relief) and one in June of 2009 (didn’t work at all.) Both of these were the standard 1200 mg per day for ten days. I took a third round in August – 1600 mg per day for 7 days. This round knocked my socks off. I lost 9 lbs and felt better than I’d felt since I’d first gotten sick. As always is my best intention, I kept a super strict low carb diet during and after the meds. I did not take probiotics during the antiboitic course and I was cautious to add them back in after. I flew to Chicago for a business trip not two weeks out from finishing the course and got bloated on the plane. The first night in the city I was so tired I went to sleep at 9:30 PM. I got up very early the next morning and I have to say that is the last time I remember feeling thoroughly refreshed from a night’s sleep. I went to the gym and then went off to training where I started feeling like I had a cold or allergies. I ate yogurt (from Starbucks or Fage from the grocer) the first two days rather than eat the food that was available to me at work, which was not safe. But by the end of the trip I had had a few food mishaps (in the form of pizza and candy.) By the time I came back to New York I was bloated and tired and I almost immediately started having skeleto-muscular pains. I went back to my regular regime of making yogurt. I also started taking natural anti-microbials like garlic oil, peppermint oil, and wild oregano oil.  And I started looking into the Weston Price Foundation and, as I mentioned in my last entry, bought the Nourishing Tradtions book.

I could go into great detail about adjusting to NT, but as I was already eating low carb, and as I was obviously not able to do everything that the book suggested (read: grains,) it wasn’t a difficult transition. We learned how to make bone broths and we started using a lot more coconut oil. I soaked my nuts before I ate them or made nut butter or flour out of them and I have to say that this had a big effect; I no longer felt like nuts were a “in moderation” food, but they seemed to be pretty safe as long as they were soaked.  (If nothing else comes out of this effort, I have delicious almond crackers that I make with my own soaked almonds, from this recipe.) I tried soaking my oatmeal in kefir but it still cramped me up and made me run to the bathroom. I didn’t start lacto-fermenting my own veggies, because I trialed the super expensive stuff at Whole Foods and it seemed to bloat me. Kefir, on the other hand, seemed like a great idea. I was already buying it in the store (I had recently found out that not all brands were made with FOS/inulin, and it seemed fine, and I felt myself a little addicted to it…dreaming about creamy, yummy kefir all the time.) I got my  kefir “grains” from someone on etsy.com and I started making my own.

Ok first of all, homemade kefir does not taste like storebought kefir. Its yeasty….it smells yeasty, it tastes yeasty and it fizzes a little. I can drink gallons of the storebought stuff in the plain flavor; goat kefir, cow kefir, I love it. This is probably because its made from some type of powdered starter culture, much like yogurt can be, but my suff is made with “grains,” or clumps of beneficial yeasts and bacterias. But my homemade kefir needs a lot of salt and sweet n’low/stevia, coconut milk, cocoa powder, whatever I can find to make it palatable to me. I just don’t really like yeasty drinks; I never have been a big beer-drinker.

So I’m drinking my kefir and I’m making my yogurt, and we’re eating bone broths and we’re making pot roasts in our own broth that we’re making from home. Let me just say here that calorie counting has flown out the window. I have always eaten way more whole unprocessed foods than packaged ones, so calorie counting has always been sort of a bitch but I have made myself do it. But at this point I don’t even feel like its an option anymore. The weight issues that I’m dealing with could be their own entry at this point; so I won’t go into them, but I have put on around 14 lbs. Not just from NT eating and drinking kefir – the weight gain has been going on even longer than that, but NT and all this homemade stuff just isn’t making things any easier.

In late August I read Dr. Alan Logan’s thoughts on VSL#3 and its connection to possible D-Lactate build-up in CFS patients. I can’t say I knew who this Dr. was or was familiar with his work but the he impressed me somewhat with his theoretical framework for D-Lactate buildup and his knowledge on the connection between the gut and chronic fatigue. I thought it was worthwhile to try doing without the VSL.

So that’s kind of where I am now. I’m left with only my unpalatable yogurt so I don’t make it as much anymore . I recently got access to raw milk and even though I followed the instructions on the WPF’s website, I couldn’t get the yogurt to set so I don’t even have any yogurt right now. I do have my unpalatable kefir and I don’t eat a lot of real foods anymore because there are so many calories in the kefir (since I try and drink about 2 to 3 cups for breakfast.) I will admit the kefir tastes a little better now with raw milk.

So that’s where I am – how am I feeling? I am a bit lethargic; its hard to get to sleep at night and even harder to wake up. Therefore I am barely exercising. I have always been a stickler about exercise but between the lethargy and the time spent in the kitchen I just don’t do it lately. I am weepy and sad and angry a lot. I fight with my husband a ton. I don’t drink often but when I do I don’t feel drunk at all and I drink far too much and I wake up very sick, unable to do anything the entire day. When I do cheat or eat off-diet, I have immediate postprandial hypotension in addition to the regular bloating and gas and distention. I’m beginning to get the muscle pains again. I feel most of the time like only part of my brain is working, like I can only do or be good at one thing at a time. If I have a good idea at work or I catch and fix a mistake in our unit’s analysis before a big presentation, then I cannot think of anything funny to say to a friend on his birthday. If I am leaving my friends witty facebook comentary or actually completing a blog entry or yahoo group post, then I cannot figure out where I left my keys.

Last night I went dancing and I expected to not make it for very long considering how lazy I’ve let myself become. But I managed around 2 hours of solid dancing, if not a little more. I came home at the normal time for a late night out Thursday; I am always very tired on Friday morning but honestly once I get through lunch I feel pretty refreshed and I always think of a book I read years ago on natural depression treatments. Sleep deprivation can be a great tonic for depression, but apparently only when the patient is woken early from their slumber, as opposed to taking to bed very late. Today I feel like there must be a gas leak in the house. I woke up to my alarm but not until it had been going off for 35 minutes. I got up and went into the bathroom, where I promptly fell back asleep. At this point I realized I wasn’t going anywhere; so I went back to bed. At 2 I could no longer sleep but I felt far from refreshed. I have been in the kitchen much of the day because our dishwasher recently broke and the place looks like a war zone; there are so many dishes from the kefir alone – the strainer, the smaller strainer, the kefiring jar, the other jar that it goes in when its done, the pitcher, the blender to make the kefir into something I can manage to choke down, and the glass I drink it out of. I have been crying off and on all day; I feel hopeless and depressed. I am very bloated. I feel very guilty for not going to work. Sometime I wish cats weren’t such lethargic animals. Because they have also been sleeping fairly deeply for the better part of the day, I am wondering if something really is wrong with the apartment, but then I remember that they are cats.

And ultimately I know there are about ten different reasons why I could be feeling the way that I am feeling. And I do not know if have the energy to trial them all. I’m frankly quite sick of this. I want to be functional and normal again. I want all of my efforts to pay off. I suppose the immediate courses of action will be to reinstate VSL and natural anti-microbials, and after that I will have to reevaluate the kefir, and after that I will have to reevaluate the NT way of eating, given that thanks to Plant Poisons and Rotten Stuff, I’m aware that its very high in food chemicals (although I have never suspected FCIS for myself, I suppose eventually you have to try everything.) After that, there’s always another round of Xifaxan but I’m frankly longing for the days when it would give months of relief and sick of the current week-long stay of execution.

Diet can start to feel like religion. Especially when its tied up in ethical or political ideals. And even more so when you eat for health and healing.  And why not? What enforces habitual behavior better than ritual?  And what is ritual in food if not daily meditation on the benefits of habits that bring shades of well-being but aren’t necessarily easy to keep?

I don’t know how others might or do feel in my place; I’ve really had to fight the tendency to grasp on to one diet tightly and cling on for dear life, pouring all my hopes and dreams of health into a glass of kefir, a rare steak, or a capsule full of fish oil. I know that my house recently welcomed its first copy of Nourishing Traditions, which now sits on our kitchen counter, already dog-earred in certain spots, and which we only half jokingly refer to as “the bible.”

But it isn’t the bible. Not for everyone. And certainly not for me. I didn’t start this post to talk about why specifically the WAPF way of eating isn’t 100% ideal for someone with SIBO. It isn’t ideal, but neither is Atkins, nor Paleo/Primal, nor the Optimal Diet or the SCD. But these diets do provide something to the typical SIBO sufferer that many dietary paths do not, and that is a template, or a starting place, for a successful diet.  I’m super glad that a small British study recently found that soluble fiber helps a lot of people with IBS, but this frankly just isn’t true for me or a lot of other people with SIBO. 

So look to the sidebar in the next few days for links to great diet templates; starting points for those of us with small intestinal bacterial overgrowth. I’d especially like to invite people with low carb, whole food blogs to submit their picks for sound dietary advice.

Oh man, pretty sure I’ve told someone somewhere before that fasting doesn’t help much. But now I’m doing it! I sure do hate fasting. I’m 13.5 hours into it and I haven’t really complained a lot but I sure want to! 

Probably only doing this for 24/48 hours because man I am way too big of a baby to keep this up. Bone broth and gelatin fast. More details to come.