Archive for October, 2009

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Fermented Milk Study…and a Murderous Confession!

October 30, 2009

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.

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post xifaxan / on erythromycin

October 23, 2009

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.

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back on the xifaxan

October 15, 2009

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.

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Enzymes

October 5, 2009

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.

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Bacon is the new cupcake indeed!

October 2, 2009

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?

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GDPA’s Fall Patient Information Session

October 1, 2009

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.

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More thoughts on kefir and a new Italian SIBO study

October 1, 2009

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.