Posts Tagged ‘SIBO’

h1

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.

Advertisements
h1

SIBO is not Candida

February 25, 2010

I am seriously always butting in where I am not invited. At least I have learned to give disclaimers, and I don’t shove Atkins down everyone’s throats anymore (although its pretty obvious from your symptoms if you are most people!) and now I’m also not such a candida-denialist. (Thanks to my group and thanks to having been on Nystatin and Diflucan for more than a month now RX’ed by holistic doctor.)

In summary, a woman from California (I mention this only because the entire board is for residents of the Central Coast, not girls in Queens!) asks how to get rid of SIBO “naturally.” Of course the first answer is from someone telling her that she has an “idea” that her SIBO is not actually SIBO but really it is Candida.

It’s really hard for me to sit by and watch people deny that SIBO exists. Sometimes, like in this case,  they are well-meaning people, with a background (either as a patient or a practitioner) in natural medicine.  But often they are just selling something, like Dr. Jeff with his McCombs Plan.

Anyway, I jumped in and here is my response:

The only natural treatment for SIBO with any research to back up claims is enteric coated peppermint oil

I moderate a support group for SIBO with 80 members and therefore speak based on the experience of myself and these folks – I am NOT a medical professional. With that said, I have found that you must take peppermint oil for a long time, (6 months or more) alongside other treatments (antibiotic/probiotic) and you must rotate it with other natural anti-microbials (garlic oil, etc.) if you want it to work.

Candida is very real and can co-exist with SIBO. However, the two are not the same. Just because most people have never heard of SIBO or don’t know a lot about it; they dismiss it and call it candida. Yes the diets are similar but they are not the same thing. SIBO is colonic bacteria inhabiting the small intestine. It is not a yeast, friendly or pathogenic. Even the Environmental Illness Resource differentiates the two.

With a SIBO you have to avoid fructose, and fiber. You need something with anti-microbial properties in order to kill the bacteria that exists in the wrong location. Probiotics can assist in ameliorating symptoms, but if the housekeeping wave isn’t working correctly to move things out of the small intestine and into the large, you might be compounding the problem in the long run by loading up on more bacteria.

I have been researching SIBO for years now and I have not run across a natural treatment. Yet it is an important part of the entire treatment regime because Holistic or natural medicine can work to correct imbalances in the body that create an environment that is SIBO-friendly. For example, SIBO can be caused by an underactive thyroid. A holistic MD who treats thyroid based on symptoms and body temperature may detect low thyroid in an individual who would be told by a conventional endocrynologist that they are “normal.” He or she can then treat the patient’s thyroid, adrenal, testicular and ovarian hormones and bring the patient to hormonal equillibrium, helping to create an environment less friendly to developing SIBO. However, if you take a look at the study linked above, you will see that even after treating for hypothyroidism, SIBO patients still needed antibiotics to kill the bacteria.

Other natural things you can do: Eat whole foods, (you are probably already doing this!) Avoid things that you know bother you, whether they are “healthy” or not. It is also very important to take HcL with meals because stomach acid kills off most infections that try to get into the gut, contributing to most bacteria being in the later part of the intestines (colon or large intestine) where they belong.

h1

A very personal request

February 11, 2010

I sent this email out to my dear friends and I’m sharing it here too as most “Year Without Cake” readers are peronally affected by this issue just as much as I am!

Dear friends,
 
I don’t often pass around requests for petition signatures. Sometimes, when a matter is extremely important to me I do. I’m asking now for a cause that may look, on the surface, to be somewhat unimportant, given the tragedy that we’ve seen thus far in 2010, not the least of which has been the earthquake in Haiti, which has devestated countless lives.
 
However, I’m asking you to give this issue a 2nd look, because it affects so many people, including myself! As some of you know, I have a gastric motility disorder known as SIBO. Having this condition has completely changed my life in many ways, not for the better. Currently there are two bills up for consideration, Senate Bill 981 and House Resolution 2275, to support research and public awareness activities (including professional development for healthcare professionals) for inflammatory bowel diseases. Additionally, there was recently a request for $665,000 in earmark funding issued to the Motility center at Cedars-Sinai Medical Center in Los Angeles to assist the innovative GI Motility research being led by Dr. Mark Pimentel who is studying the use of antibiotics to prevent severe bacterial overgrowth in various GI motility diseases. Dr. Pimentel wrote the book (literally) on SIBO and to this day my doctor and I follow his recommendations to treat my condition. However, Dr. Pimentel hasn’t yet found a cure, nor are there cures for even more serious motility conditions such as gastroparesis or pseudointestinal obstruction.
 
On December 12 (my birthday!) and December 13th Senator John McCain made a series of comments during open debate on the floor of the United States Senate and on a Fox News broadcast protesting against this earmark. His comments trivialized motility disorders and the important research that is needed to help people affected by them. I echo the belief of my friend Michael Smith of G-PACT when I say that these types of comments only serve to foster an unnecessary ignorance of the severity of GI motility disease. Given what I and my family have been through during the last four years, I can promise you that SIBO and other motility disorders are neither funny nor trivial. Speculative reserach has linked SIBO to many other non-gastrointestinal conditions such as Fibromyalgia, Fatigue, and Interstitial Cystitis. Sadly, I have recently been diagnosed with some of these other conditions.
 
So that is why I’m sending you this email and asking you to sign this petition: “Senator McCain: Support Research Funding for Gastric Motility Disorders ”
http://www.ipetitions.com/petition/gastricmotilityresearch/
 
It doesn’t matter what your political affiliation or partisanship is. You can support John McCain but he needs to know that you don’t think his comments were appropriate or funny. Many people of both political parties suffer from motility disorders. All politicians need to know how important it is that we fund research and find a cure for these conditions. Please sign this petition and please pass my request along to your friends as you see fit.
 
Many, many thanks to all of you, my friends

h1

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!

h1

Update

December 2, 2009

Something strange is going on with the blog; it looks as if everything past October is gone. This is probably only a temporary snafu, but I was thinking of posting anyway, so this update will serve as a test and a real post I suppose.

Yesterday I had flu-like symptoms, and when I took my temperature, it ranged from 95.5 – 96.5 F. Today my temperature is higher but not feverish, but I am home sick all the same, coughing and sneezing and sweating and as an added bonus I have menstrual cramps. Yesterday, in my non-feverish yet totally flu-like haze, I bought an Atkins bar. The small amounts of malitol and sucralose did not bother me as they have in the past. However, chocolate is not allowed on the low-histamine diet. The mistake caused me to consider throwing in the towel on the low-histamine diet, which has not brought about any changes. It had only been three days, but the person in the Yahoo group felt great after 3 days and began to add in the allowed carbs. I kept up the show, however, and just skipped out on food for the rest of the  work day, not being too hungry anyway. I came home and had a few ounces of lamb and a half cup of homemade mashed potatoes for dinner. I also ate a small amount of peanut butter and ricotta cheese and pecans. I was so bloated and miserable all night.  Today I started my period so whos to say what is and isn’t making me ill, between the flu and that.

This blog gets a lot more traffic when I’m feeling well. Of course people want to know how to be cured and how to feel better. I really want to know that. I’m tired of the things I want to be doing falling just out of reach. I’m tired of being someone who makes an effort to be healthy but keeps falling ill. With little colds, feeling flu-ish, etc. I have finally banished the migratory musculoskeletal pains, “bone pain” as I used to call it, and I think this is thanks to mega-dosing with Vitamin D. I’m super grateful that they are gone; the pain was really debilitating at times. But I am still dealing with the bloating and distention, the abdominal cramping, the weight gain, the sneezing and runny noses, and now dizziness and achiness. I am going to see a new doctor towards the end of the month. We have to wait until then because he is outside the union healthcare system, which means I will have to pay out of pocket. He is a holistic doctor, and some of his patient testimonials talk about how he helped people fix their subclinical thyroid and yeast issues. I have held some pretty firm anti-candida views in the past. However, at this point I’m fairly willing to believe that if bacteria can overgrow, then yeast can too. And I’m nearly positive that my thyroid is busted. Test results be damned. So I’m hopeful.

h1

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?

h1

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.