Archive for the ‘antibiotics’ 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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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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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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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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Nourishing Traditions, cultured dairy and to VSL or not to VSL?

September 25, 2009

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.

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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?