Archive for the ‘SIBO’ Category

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The etymology of an orphan

February 26, 2010

Xifaxan and its manufacturer, Salix, has been making news all week. An FDA advisory panel recently recommended the approval of Xifaxan in 550 mg tablets, as an Orphan Drug  for the maintenance of remission of hepatic encephalopathy (HE,) a dangerous result of liver failure.

Xifaxan or Rifaximin, is almost always the front line antibiotic used to eradicate SIBO. According to the literature, it has many advantages over other antibiotics. As a broad-spectrum, non-absorbable antibiotic, it is not absorbed into the bloodstream and it acts against both gram-positive and gram-negative pathogens. In many trials, the administration of Rifaxamin has produced a very low occurrence of side effects and additionally the risk of antibiotic resistance is lower with Rifaxamin than with many other antibiotics. Probably the most unique property of Rifaxamin, and also what makes it most useful to people with SIBO, is its demonstrated efficacy against bloating!  It has also been used to reduce or eliminate cutaneous lesions in Rosacea patients with SIBO.

To be honest I am unclear of the FDA’s recommendation for people with SIBO. If there is an impact, what does the drug’s status as an orphan drug mean for SIBO?

According to Wikipedia, the Orphan Drug Act is “meant to encourage pharmaceutical companies to develop drugs for diseases that have a small market.” That is certainly SIBO!  However, orphan drugs have to treat orphan diseases; conditions that affect fewer than 200,000 people in the United States. I have no idea how many people in the United States suffer from SIBO. During holidays and office birthday parties when I watch everyone eat candy I feel like I may be the only SIBO patient in the nation.

It may not matter whether or not SIBO is an orphan disease. Just a day before the news broke of the FDA recommendation, an article discussing the deliberation noted that Salix is planning to submit a new drug application for Xifaxan this year, specifically for the irritable bowel syndrome indication in the first half of 2010.

 Currently, Xifaxan is prescribed to people with SIBO off-label. The developments of Salix’s new application for Xifaxan for IBS will be of some interest to the SIBO community because if it is approved then Xifaxan could be prescribed specifically for SIBO. Xifaxan has not worked for all of us; I have taken several courses and sometimes it works and sometimes it doesn’t. However, the largest issue with Xifaxan for SIBO is the prohibitively high cost. Most insurance companies just don’t cover drugs when they are used off-label. If Salix’s application is approved, more people with SIBO will at least be able to try Xifaxan. Which, I believe is a good thing. It is interesting to note that there were questions of both efficacy and safety during the HE study, and the SIBO community should be on the lookout to see if these same issues arise during the IBS studies.

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Google Alerts, Twitter Accounts, SIBO Awareness and Internet Friendships!

February 2, 2010

I don’t know what I would do without Google alerts. I was able to watch the Sherlock Holmes trailer the day it was released, although I don’t typically comb the internet for movie news. I kept tabs on my “home” agency, the one where I currently work, where I first worked out of grad school, while I left to trial the private sector.  And I found NonNosher thanks to Google Alerts too! And finding NonNosher’s blog, the Year of Eating Weirdly-Celiac Surprise, could not have come at a better time.

It’s true. I mean, I lived through months and months of mostly the same thing every night – a link here and there to a journal article I’d already read. Or a link to a citation to that same journal article. Or a brand new lit review would come out rehashing all the relevant SIBO literature, which I’d already read. Hooray! Sometimes the link would point to a recent forum post penned by – you guessed it, me! I did learn something completely new from my SIBO Google alerts – apparently SIBO is a very popular nickname!

So, when one day I opened up my Google alert to find mention of NonNoshing and Noragomy (what?) and Celiac disease, I probably didn’t think much at first, but I followed the  link anyway, and what did I see but someone else who used to really enjoy food and eating but now had problems with common, everyday items like fructose and gluten! I read with excitement upon finding my very first SIBO-centric blog besides my own, and I commented immediately. And here we are, about a month later and we’re twittering for SIBO Awareness. That’s right! You may have noticed that my twitter link has changed from my personal account, which is sometimes SIBO-related, to a new one using my blog name. You can find me here: http://twitter.com/GirrlockHolmes

Please follow me and then follow NonNosher, my partner for SIBO Awareness here: http://twitter.com/NonNosher

We want doctors to know how to test for and diagnose SIBO. We want nutritionists to recognize the signs and symtpoms of SIBO and be able to recommend healthy, SIBO-safe food choices. We want SIBO to get the same publicity that Celiac disease and the gluten-free lifestyle have. We want an easier time for the woman or man who wakes up one day and wonders where the bloating and distention or diarrhea and constipation or migratory myalgia or any other more or less common SIBO symtpom are coming from to have a little bit of an easier time on thier way to diagnosis. We want awareness and eventually we want something beyond treatment and recurrance. We want a cure!

NonNosher will probably, much like myself, need a little more than a year to eat weirdly and abstain from cake. Maybe, like me, NonNosher will need a few years. Here’s to a shared campaign and the wonder of the internet for bringing two women in two different states with the same digestive condition together to tweet for more awareness about SIBO!

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Happy New Year Without Cake!

January 1, 2010

Let’s make it a good one. I have a lot of things in mind for how we can do that, but it mostly comes down to talking about what we’re going through, with each other, as loudly as we possibly can. There is so much activity in the yahoo group right now that I can’t keep up with all the posts. Some of us are really suffering right now and some of us are feeling better. I shed a tear for what we are going through a few mornings ago. But if we’re going to be going through it, its best that we’re all talking about it together.

I owe people blog posts and comments and replies to comments and messages and emails. These are coming. Tonight, however, I’m enjoying a healthy chicken dinner and a few hours of Rock Band with my friends. I love New Year’s Eve and New Year’s Day and the chance to start fresh or inject new life into ongoing quests. I didn’t really take time to make resolutions this year but here are a few things I’m thinking I want to do:

Find out how what things I can do to feel great and do everything in my power to do these things the right way

Stand up for inquiry and the questioning of conventional wisdom whenever I can, and be willing to accept conventional wisdom when and if it is actually right!

Continue being an advocate for myself and be an advocate for someone else

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All of the above most likely

November 17, 2009

Does this picture make me tear up (and sob uncontrollably) because

A) I grew up without a mother, who died when I was 10?

B) I’m afraid I’ll never have a child of my own? This used to be totally okay; I even went through the trouble of falling in love with a man who also didn’t want to have kids. I think if I were experiencing anything like what most women go through with their biological clocks I might have died by now, but mine’s ticking a little – I swear I can hear it under a pile of new wave CDs, my undying love for my cats, about 12 months of backlogged student loan payments, several layers of guilt about not being productive enough at work, a few screenplays I never wrote or produced, and that decision I have to make aboutwhat I’m going to wear this weekend to that party that I love.

C) I’m on my 6th round of Xifaxan and they always make me feel a little crazy?

OK Here are my symptoms: Slight irritability. A light feeling of sadness and despair. Light bloating and crampiness.

That’s it. Seriously.

And here’s my theory. Kefir ruined my life. This happened because the housekeeper wave is screwed, and has been since the spring of 2006, if not before. Kefir grains may be full of beneficial bacteria but they tend to deposit all the good stuff in all the wrong places for me. Hence, the last course I took of Xifaxan wasn’t able to help me as much as it normally does. Not because it wasn’t working, but rather because it was working so intensely hard. It was trying to get to the normal bad guys colonizing my small intestine, but it got really busy killing off an entirely new population of friendlies, kefir-y goodness friendlies, meant for my colon, which had taken up residence in my small bowel. This is why I had a CRAZY Herxheimer, which included severe body aches, depression, bloating and distention, headaches, diarrhea, and just loads and loads of misery. But it was all worth it because I got better, right?

WRONG! I pretty much felt only slightly better than before. Which is why I am taking a sixth course. I hold out hope that this time I truly did just need more Xifaxan to completely wipe out the unusually large (even by my dense standards) microbial zoo living in my short gut.

Good things that are happening – I’ve lost a few pounds, finally. I am slightly less tired than before and able to work out (which is why the weight is coming off – god bless you low carb enthusiasts like Taubes but if I don’t move I don’t lose) and I don’t want to spend my entire life under the covers, just some of it.

More to come.

Comments, suggestions?

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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.

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RLS/SIBO/celiac connection article

September 4, 2009

The Restless Leg Syndrome, SIBO, Celiac Connection

Interesting yet not completely new idea. Be sure and follow the link to the specialists’ site as well.  

I am waiting for the chronic multi-illness/SIBO connection research to catch up with the digestive-distress caused by SIBO reocurrance research (there isn’t much.) I wonder what happens when antibiotics are administered, say the 3rd or 4th time, but do not fully eradicate the bacteria. Do the non-digestive symptoms return and continue the way that the digestive ones do? And what role can probiotics play in preventing these types of symptoms?

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The antimicrobial properties of kefir, Gulf War Syndrome and gut bacteria, and the effects of high-fat nutrition on gut flora

September 2, 2009

Some interesting and unexpected research finds today:

On kefir, which I am beginning to make in my home

Resoution of Recurrent Clostridium difficile-associated Diarrhea Using Staggered Antibiotic Withdrawal and Kefir

Antimicrobial and healing activity of kefir and kefiran extract

And a few interesting studies recruiting now…

Bacterial Overgrowth Associated With Chronic Multisymptom Illness Complex
Taking the super obvious connection between SIBO and CFS past the obvious and examining the symptoms occurring specifically in Gulf War Syndrome (GWS) patients! Phenomenal!
And…

A controlled feeding experiment

“The purpose of this study is to determine the effect of dietary fat, in standard formulation, on the composition of the human microbiome in a prospective study of normal volunteers. Participants will be randomly assigned to either a high fat or low fat diet for 10 days. The gut microbiome will be phylotyped in fecal samples as well as in bacteria adherent to the colonic mucosa prior to, and during the course of the dietary interventions.”

I’m definitely going to want to follow these two for outcomes.

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