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?

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.

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?

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…

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.

At present I’m taking a course of Neomycin. This is my first time on an antibiotic that isn’t Xifaxan, and I’m not liking what’s going on with my body. Lots of bloating, popping out of my clothes, abdominal pain and no appetite whatsoever.

The nicest thing anyone could ever say to me when I tell them how bloated and distended I am is “Wow, I see. I’m sorry.” Barring actually agreeing with me, just a simple “That sucks, I’m sorry you’re going through this” would suffice.

Things that aren’t so cool to hear:

No one can tell.

You feel it, but no one can see.

It probably feels worse than it is.

These are all well-meant as the person is trying to assist me in moving past the discomfort and getting on with my life. That’s great. But it just hurts my feelings. IF I’m complaining to you about my bloating and distention, we’re not just acquaintances – we know each other pretty well! so feel free to acknowledge that you sort of know what I look like! I mean, walking around with my gut hanging over my waistline is not really my normal thing; I tend to buy clothes that fit me. This thing takes over my body and blows me a little bit out of proportion. I don’t think I’m gaining the 6 inches each day that I used to before the diagnosis, but it still gets hard to breathe, hard to wear my clothes, and therefore hard to feel comfortable in my own skin. There’s nothing worse than walking around distended and thinking that even your friends think you always look this way. What’s the point of anything? I think I’ll just wear a potato sack to work! Although first I’ll need someone else to clear all these potatoes out of the way…

Even though I made promises to update the blog, I’ve failed at many attempts. I’m having a couple of issues.

I prefer discussion over a monologue. Obviously this is why I do tend to give a little more attention to my yahoo group, because we can bounce ideas off one another, and address specific and targeted issues that people are having. Here too, however, I can be slow/late/negligent when it comes to writing and responding to group discussions because Outside of work I spend very little time sitting down. I had a knitting blog once. I used to like movies. But as a cursory glance at this blog will tell you, I am not one of those SIBO’ers who has trouble keeping weight on; quite the opposite, I have trouble losing, and I haven’t lost nearly 40 lbs in the last 2 years or so by blogging or knitting or watching movies. I run, I use the elliptical and crosstrainer, I lift weights, I play wii sports and wii active and I go dancing whenever I can. So blogging is just once thing that’s slipped out of my grasp a little in an effort to hit my weight loss goal (about 10 – 15 more  lbs to go btw. Lastly, I’m learning something about myself lately and it’s that I’m uncomfortable with the amount of knowledge I have about this condition. I have yet to meet/cross paths with anyone who knows more about SIBO than I. Bloggers, forum posters, doctors, you name it. I value expertise very highly and I do not think it comes easily. All this time I have been avoiding telling people how they should deal with their own overgrowth, what they should eat, what they should take, etc. But a few things are becoming clear in my group. There are only a handful but I want to discuss them a post at a time. So for starters, lets talk about diet.

1) A Low carb, high fat diet helps most everyone with SIBO to manage their symptoms and feel a little more normal. The people who aren’t helped by low carb generally fall into two categories: A) People who either think they have issues with fat digestion or people who really have issues with fat digestion and B) People who won’t even bother trying. A group discussion recently brought me enormous frustration when it went something like this:

“I am very sick.” “what’s your diet like?” “I eat pretty much nothing but fruits and oats.” “Try low carb.” “Oh that doesn’t work for me. I need lots of fiber to keep me regular. I put psyllium husks in my fruit smoothie.” “Okay, well maybe you should stop that and try to drop the carbs and up the fat.” “Oh no, I’ve tried a high protein diet before and I have issues with C.”"Okay well protein isn’t going to help you go to the bathroom but fat is.” “Oh I can’t eat a high protein diet.”

I haven’t done a ton of research on high protein diets. I eat what some might consider high protein, at between 110 – 150 grams per day. I also run 3 miles a day most days, or go dancing for 3 hours at a time with no breaks. I need the protein I consume. I remember the hair loss that used to occur all the time in my vegan years; I don’t have to deal with that anymore. When you look at my macronutrient breakdown, however, my diet is really high fat. Always my fat intake is at least 60% of my total intake. That leaves less room for protein and even less room for carbs. There are a few reasons for that. First of all, when you have SIBO, fiber becomes fairly indigestible. If you can easily digest fiber, I’ve got news for you – you probably don’t have SIBO. Secondly, most sugars aren’t digestible either, so if you have no sugar, and you have no fiber, all you’re left with is starch. And guess what? While Dr. Pimentel says you can eat all the potatoes, pasta, rice, and bread that you want, (and I hope for your sake he’s right) you may be like me, and those foods may bother you about as much as low GI carbs do. Generally, we with SIBO have two modes of operating – Playing It Safe, and Life Experimentation. Playing it Safe occurs when we feel worst, when we’re trying to figure out what is wrong, when we have an important event coming up and we don’t want to pop out of our party dress or spend the evening in the restroom missing out. Life Experimentation is what we’re doing when we’re not Playing it Safe. Playing it Safe means neither of us are eating rice or oatmeal or buckwheat, if we’re smart. Unless we know for a fact that those foods aren’t feeding the SIBO, and I doubt I can find one person who doesn’t know that. But if you are them, by all means, eat those oats! During Life Experimentation, very few rules apply, except that there is no reason to think you can go overboard on fruit and fiber with no consequence. The important thing, however, is that Life Experimentation gives you something you didn’t have before – knowledge. Of how a food gets on with your digestive tract. During a certain time of the day. During a certain length of time out from your treatment. During your period. All the time. Whatever you can grasp.

High fat and high protein are not the same thing. Okay, now that we are clear there, I will need a person to tell me that they ate a lamb chop cooked in coconut oil (or something less chemically offensive if they are FCI) or a broiled steak or a piece of baked cod and then tell me that they experienced bloating and gas and cramping or some other symptom due to their meal before I will change my tune from the simple gospel that if you have SIBO, meat will not make you sick. I get so tired of reading blog after blog and discussion post after discussion post about people eating ramen noodles while their family dines on turkey or ham. If you have SIBO, there is no mechanism by which the bacteria living in your small bowel can digest or even attempt to digest meat. Meat is probably the safest food you can eat, followed by eggs if you are not allergic (most people aren’t) and dairy if you are not intolerant to that. You can add green veggies to your diet as long as tolerated – the fiber can get you though so be careful with that one.

I have heard a lot of excuses for not going low carb. Especially distubing is the SIBO sufferer who is having trouble keeping weight on; he or she is afraid to eat a low carb diet because then won’t they just lose tons more weight? Maybe I just love food too much, but my answer would be “not if you eat enough of it,” which might be easier to do once you begin to eat food that your body is capable of digesting.

What’s your experience with low carb, high fat? Did it help your SIBO? If not, please share your thoughts and help me understand why I’m being a douche.

My job is often full of inappropriate people, but then a lot of jobs are. A lot of times it can actually feel like I’m babysitting a bunch of rude children, only I’m not really paying all that much attention to what they spend all day doing. I’ve been chided more than once for taking lots of supplements (so much so that I’ve bought little pill keepers and carted things back and forth instead of keeping my bottles on my desk) and I’ve been asked why I spend so much money on food when people spot me carrying bags in from the local organic market. I’ve been asked point blank why I don’t ever partake in birthday cakes. Because we have about a million birthdays every week here. And apparently some people are offended when everyone on the floor doesn’t participate. Even though I pay into the cake fund each month when asked!

Today I got in the elevator with a gentleman who works here on my floor. He turns to another gentleman in the elevator, a friend of his, and asks, “If you don’t mind me asking, why are you putting on so much weight?”

I was mortified for them both. The poor guy was really embarrassed. He wasn’t really overweight, by the way. The offending man turned towards me and tried to explain himself, but I told him that there wasn’t any explanation in the world that he could offer to get himself out of that one.

Xifaxan has been done for some time now. I’m feeling like my old self again. Still low carb, although my doctor has urged me to test the carby waters, so I do every now and then. I have a wrap, I have a bowl of puffed rice. I always react, only not as badly as before. the discomfort is always there but the bloating just isn’t as bad as it used to be. We are waiting it out and I may undergo a second breath test in July, and respectively a second course of antibiotics. I’m really into the idea of regaining my carb tolerance, but not in order to eat them regularly, because I’d like to get back into deep ketosis. I’ve been playing around with my macronutrient breakdown a little bit this month, going back and forth from high protein to high fat. Again, I have no idea what I’m doing, but high fat does seem to rev up my metabolism a little. I realized today that if I look at weekly or even monthly totals, I’m still losing at a very slow rate, but if I look at the long view, or two months to the day since I started weighing everyday, using a heart rate monitor, and burning more calories but less frequently, I have lost 7 lbs. That’s 3.5 lbs per month – that’s quite fast for me.

I wish I really knew what I was talking about when it came to nutrition, but I don’t. I only know that I constantly stride the balance between a biologically driven disaster waiting to happen and someone who learns from experience. I think that’s what most of us are. How much we learn varies. How willing to act on what we learn varies even greater. And how lucky we are when it comes to the efficacy of our application is an entirely different story.

Tonight I will take my 27th dose of Xifaxan, bringing my next to last day of the ten day course to a close. Each day has been different. I’ve felt pretty bad almost the whole time – physically and emotionally. Although I ran my first non-stop mile last weekend, my workouts otherwise have been kind of crappy. I’ve lost interest in work. I am generally weepy and tired a lot. I don’t attribute this to Xifaxan on the whole. I’m curious about a whole host of things. I have my period. I’ve been drinking Diet sodas again. Emma says that the effects of aspartame are worse after exercise and I live at the gym these days. I’ve been getting whole caff coffees rather than half caffs. I’ve been eating a ton of protein. And my carbs have been high – in the high 30s to low 40s.

The weight loss is going well. Its slow but not as slow as it had been. I think I’m losing at a pace that I can accept now. It’s for shame that I would be at or around my ideal weight if it had only come off like this from the start. I’ve lingered for a few days at my lowest adult weight ever. I’m looking forward to getting lower. I hope that a weekend in CT won’t ruin things. I don’t plan on eating off diet or anything, its just hard to know what you’re really getting when you are dependent on restaurants and the B&B kitchen.

I’m incredibly thankful that I had a chance to have a breath test and I’m incredibly thankful that I had a chance to take Xifaxan. And I’m pretty terrified that it won’t work. That’s where I am with that.

On Monday morning I found out that my hydrogen breath test was positive for small intestinal bacterial overgrowth. Today is my second day on 1200 mg of Xifaxan. I am also taking VSL #3. I am trying to keep my regular low-carb diet with minimal lactose. It’s going well. I don’t feel so great. Kind of like a good day pre-low-carb. A bit of gas, especially at the gym. Some pain. Lots of rumbling, but some of it from places that I’ve never really heard rumbling before. I will start my period soon, so the little bit of bloating could be that.

I really didn’t want the hydrogen breath test – getting it approved, taking it, waiting for the results – to be a big deal. I have been disappointed by so many test results before. But I just found out that the doctor has analyzed my test kit, so I’m all ajitters to find out……