Posts Tagged ‘antibiotics’

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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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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.

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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

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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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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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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?