# What I did to help cure my ibs/sibo



## Oceangirl

I was updating on a long thread so wanted to post the information here. I've had bad ibs/sibo for over a year. Had three ER visits. Was going to the bathroom 5-20 times a day every day for the last several months. Severe violent cramping, which made me throw up once. I was severely dehydrated frequently. Had constant inflammation and soreness. Could not tolerate milk or sugar anymore. Could barely eat at times. Started not being able to leave the house except for work and had a modified work form.

I have finally been symptom free and pain free for over a month. Everyone is different but I wanted to post what helped me in case anyone wants to see if something I did might help them. What I did was:

1. Xifaxan antibiotic treatment 3x a day for 14 days. I only made it to day 11 since it was extremely hard.

2. After treatment I took saccharomyces boulardii, a probiotic, for a month and my stool became solid and I think it helped restore my helpful bacteria and kept the bad stuff away.

3. Cystoprotek - it's marketed for repairing your bladder but it blocks mast cells that cause inflammation and contains compounds that rebuild the lining of your bladder. I think it helped with my intestines, pain and inflammation. It takes time to work. Usually 2-4 months.

4. I drank Aloe Vera throughout the day to help with stomach pain and to soothe my GI tract.

5. I also drank Licorice tea which contained ginger, cinnamon, and some other herbs for taste. It completely cured my stomach pain and muscle pain. It has a lot of benefits like coating the stomach, stopping inflamation, providing minerals, soothing and protecting the intestines. It's safe in normal doses and fine to have one cup a day but if you take to much of it, it can have side effects like high blood pressure. The same thing can happen if you eat to much licorice candy made from licorice. It also can't be taken on certain medications but this worked really well for me and quickly. There are also licorice teas made that are free of the DGL that causes symptoms in high doses.

6. Slippery Elm lozenges provided some inflammation relief. I also took VSL-3 off and on but don't think it did much. I didn't notice anything different on glutamine. Bentaine HCL started giving me acid reflux so I stopped it. I also took Vitamin E.

Everyone is different but those things are what I did and I am finally not in pain or suffering anymore and my ibs is gone.


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## Colt

Congrats on the success and thanks for sharing your results. I am sure there are many others who find relief and never share it with the group here.

I am thinking about trying xifaxan in January....can you please tell us more about your comment of it being 'hard'?


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## Oceangirl

Well I tend to not be able to tolerate a lot of medicines in general. Or I guess when I feel pain it's hard to tolerate. I also have anxiety. I'll describe what it was like for me though I know the side effects and experiences vary widely.

I think it was after a few days, my stomach started to swell up. It wasn't bloating from gas, I was retaining water. This continued for most of the time on the antibiotic. My diarrhea became more severe. One time when I went to the bathroom I had more stool in the toilet than I had ever seen in my life. It actually really scared me. I had bad cramping and diarrhea daily. I had to take pain pills. I started feeling pain more in my stomach and bladder and had a lot of inflammation. One day I just could barely move anymore. I was in so much pain. I was determined and kept forcing myself to take the pills but quit on day eleven. Afterwards I still felt horrible for 3 weeks and thought it didn't work. Was having more daily stomach pain and thought I might have an ulcer and it hurt to eat. I was still swelling and having diarrhea. Then my bowel movements started happening only 0-2 times a day but was still in pain and it hurt after I had a bowel movement and I'd start having inflammation. I took the following steps I mentioned, some I started after right the antibiotics and I started feeling a little better and now finally don't have pain or diarrhea anymore.


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## Colt

Oceangirl said:


> Well I tend to not be able to tolerate a lot of medicines in general. Or I guess when I feel pain it's hard to tolerate. I also have anxiety. I'll describe what it was like for me though I know the side effects and experiences vary widely.
> 
> I think it was after a few days, my stomach started to swell up. It wasn't bloating from gas, I was retaining water. This continued for most of the time on the antibiotic. My diarrhea became more severe. One time when I went to the bathroom I had more stool in the toilet than I had ever seen in my life. It actually really scared me. I had bad cramping and diarrhea daily. I had to take pain pills. I started feeling pain more in my stomach and bladder and had a lot of inflammation. One day I just could barely move anymore. I was in so much pain. I was determined and kept forcing myself to take the pills but quit on day eleven. Afterwards I still felt horrible for 3 weeks and thought it didn't work. Was having more daily stomach pain and thought I might have an ulcer and it hurt to eat. I was still swelling and having diarrhea. Then my bowel movements started happening only 0-2 times a day but was still in pain and it hurt after I had a bowel movement and I'd start having inflammation. I took the following steps I mentioned, some I started after right the antibiotics and I started feeling a little better and now finally don't have pain or diarrhea anymore.


Thanks, Oceangirl. Sounds pretty brutal. Perhaps when I try it I will go with a lower dose over a longer period of time. Again, appreciate you sharing. Nothing ticks me off more than all the incomplete threads on this board. One wonders if the person was cured and quit posting, or it got worse and they quit posting!!


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## Oceangirl

Yeah the protocol in a new ibs solution is 2x a day for 10 days. They've done studies showing 3x per day for 14 days works better but it was brutal and I'm sure 2x a day works good to. I know if my ibs/sibo ever comes back I am never doing that dose again.

Yeah I was trying anything and everything and wanted to let people know if I had success with anything. I knew about the bladder pills from when I had bladder problems years ago and bad inflammation and it cured me after 4 months so thought it might help all of the inflammation I was having with ibs since I couldn't stop swelling up and being tender everywhere. I hope something I mentioned helps someone. I really went through a lot.


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## Colt

Oceangirl said:


> Yeah the protocol in a new ibs solution is 2x a day for 10 days. They've done studies showing 3x per day for 14 days works better but it was brutal and I'm sure 2x a day works good to. I know if my ibs/sibo ever comes back I am never doing that dose again.
> 
> Yeah I was trying anything and everything and wanted to let people know if I had success with anything. I knew about the bladder pills from when I had bladder problems years ago and bad inflammation and it cured me after 4 months so thought it might help all of the inflammation I was having with ibs since I couldn't stop swelling up and being tender everywhere. I hope something I mentioned helps someone. I really went through a lot.


It will help people for sure. Your sharing of your experience is a wonderful thing to do. I will probably go 2X per day if I try it.


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## Oceangirl

Thanks!  Some things were suggested by my neuropathic doctor I paid hundreds of dollars to see, so maybe it will save someone money to haha.


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## Oceangirl

Oh also sorry forgot to mention to everyone that I have been on amytriptaline for years even before I got ibs and am on 30mg a day currently, that I take before bed.

And for now I am able to eat anything and not get sick at all.


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## Colt

Oceangirl.....if there was just one item from your list that you feel made the most positive effect, which would that be?


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## christinewilkinson

Thank you so much for sharing, I have SEVERE IBSD and sibo, I was prescribed, Xifaxan, which was a God send! But a week after I finished the medication, everything came back with vengeance!


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## Oceangirl

@Colt, that's so hard to say since I was taking different things at once. I imagine the antibiotic made the most long term difference but the SB probiotic helped me recover from the antibiotic when I was sick and I still take a pill of it now and then so I think maybe those to. I also forgot to mention I still had bad stomach pain after and my doctor did give me prilosec along with the tea and lozenges that helped my stomach. I guess I had to much acid from all the stress though I know some people with SIBO don't make enough acid so I'd advise Prilosec with caution for the stomach pain that we all feel. It's OTC at a drug store so worth trying for a week and seeing if you feel better or worse. That might give a clue to if you make to much or not enough acid.


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## Colt

Oceangirl said:


> @Colt, that's so hard to say since I was taking different things at once. I imagine the antibiotic made the most long term difference but the SB probiotic helped me recover from the antibiotic when I was sick and I still take a pill of it now and then so I think maybe those to. I also forgot to mention I still had bad stomach pain after and my doctor did give me prilosec along with the tea and lozenges that helped my stomach. I guess I had to much acid from all the stress though I know some people with SIBO don't make enough acid so I'd advise Prilosec with caution for the stomach pain that we all feel. It's OTC at a drug store so worth trying for a week and seeing if you feel better or worse. That might give a clue to if you make to much or not enough acid.


Thanks!!


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## Oceangirl

@christine I'm so sorry to hear that and I read a lot of that happening on the forum. I know they check for things like yeast, fungal infections, parasites, food allergies etc that can cause IBS. The SB probiotic prevents unhealthy bacteria from growing I took it right after the antibiotics. I don't know if that would help or trying anything I did. My dose of Xifaxan was a heavy dose as well. It might take a couple of rounds of it. I was also considering fecal implant if this didn't work so you might want to look into that if they can't find anything else I mentioned. It seems to have a high success rate. I tried to cut down on sugar, milk and bread as well when I had IBS. I took enteric peppermint and that helped as well. I don't take it anymore since it can interact with prilosec. I also still take the Cystoprotek daily since it blocks inflammation since that was a big problem for me as I swelled up a lot after I went to the bathroom and it wasn't just gas. There's a reason people are sick with this just have to find the cause. It's so miserable to have IBS.


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## Oceangirl

@christine Also for bad SIBO there is the vivonex diet for two weeks. It doesn't sound fun but if you have SIBO that is hard to get rid of it might work.


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## Oceangirl

Hello everyone I wanted to update you. It's been 3 months I think and I have continued to have 0 diarrhea. I take the probiotic I mentioned almost every day and nothing else. Unfortunately I am still bloating up so I may go on the vivonex diet to clear out any bacteria overgrowth since it's likely why I'm still bloated a lot. I'm going to actually try Absorb Plus since vivonex has fake sugar I don't want. They're out of stock but when I get it I'll let you know how it is. I plan on doing it for 2 weeks but can only have unflavored vanilla so that sounds like it will suck and be boring but the bloating is painful at times so want to get rid of it and don't want to take the antibiotics again. But I'm glad at least I have no more diarrhea. I really recommend everyone who has IBS to get checked for SIBO. Don't let stupid doctors ruin your life like the year that was taken away from me because they didn't help me at all until I saw my own doctor and took matters into my own hands. Even now they act like me bloating and having pain is stress. Their excuse for everything but I'm sure the SIBO just didn't get entirely cleared out.


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## jaumeb

Hi Oceangirl, thanks for updating.

I have been taking the S. Boulardii for longer than a month and I think it helped with my D. I take one pill of "orthomolecular products" and one pill of "kirkman" brand. The latter might be spoiled as shipping took two weeks and it requires refrigeration. Which brand do you use?

Recently tested positive for H. Pylori. I don't know if that has anything to do with my symptoms, which are lower abdominal pain.

I am also following the SCD diet.


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## Oceangirl

That's awesome. I really do think the S.Boulardii helps. It helps prevent bad bacteria from staying in your body and there's research it helps with C.Diff infections. I think when I take it with food I notice I can tolerate the meal a little better. It doesn't give me diarrhea like some probiotics do to me. I take the Jarrow kind which is what my Naturopathic doctor said to get.

You definetly need to get rid of the H.Pylori that can cause a lot of IBS like symptoms. The treatment should help you a lot.

I also wanted to mention to everyone in general I know some people say the antibiotics only helped them short term but I read an interview with Pimentel that says bacteria likes to hibernate and when you're on the antibiotics you have to eat more carbs and sugars and bad things so the bacteria comes out and you'll make sure to kill more of it. It's been 3 months with no D for me and I did that. Just want to mention that for those who test positive for SIBO.

Also they have studies where they take actual samples to look for SIBO and say it's low in people with IBS but the the test done even the nhl said that a lot of bacteria die in the air and it contaminates the collection by doing it that way and it underestimates the amount of people with SIBO. To be fair Pimentel may have over estimated as well they said, but I do believe there is a connection. His treatment helped me. You can get a SIBO breath test to do at home if your doctor orders it.


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## minimalizer

Oceangirl: I drank Aloe Vera throughout the day to help with stomach pain and to soothe my GI tract.

*I would not suggest any aloe unless suggesting a brand that "states" they have removed the laxative component, like they do with George's aloe*. Otherwise, whole leaf extracted aloe can cause diarrhea.


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## MaximilianKohler

I would recommend against taking xifaxan unless OP tried saccharomyces boulardii with no affect prior to taking xifaxan.

The reason is because I think xifaxan was the cause of my problems. Saccharomyces boulardii has also had very positive affects on me. So I'm not sure xifaxan is necessary, or a good idea at all, unless you try specific probiotic strains first to no affect.


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## Oceangirl

Yes be sure the aloe doesn't have anything that causes diarrhea. The Xifaxan made a big difference in my symptoms. I haven't had diarrhea since but it's not for everyone. Regular probiotics like VSL-3 and some other brands from whole foods gave me diarrhea. The SC is the only one I took that improved my diarrhea.


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## MaximilianKohler

Oceangirl said:


> Yes be sure the aloe doesn't have anything that causes diarrhea. The Xifaxan made a big difference in my symptoms. I haven't had diarrhea since but it's not for everyone. Regular probiotics like VSL-3 and some other brands from whole foods gave me diarrhea. The SC is the only one I took that improved my diarrhea.


Yeah, VSL3 wasn't effective for me either.

The important question is if you tried saccharomyces boulardii before you tried xifaxan. Because if not, it is likely the saccharomyces boulardii that fixed you, and the xifaxan could have been completely unnecessary and possibly even detrimental.


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## Oceangirl

You raise an interesting point. I started taking the SB after the Xifaxan. It's hard to believe one pill a day of that probiotic could have cured me since I was so sick. It seemed like it was both of them. That would be quite remarkable. I am still having bloating and have considered taking 2 pills a day of the SB+mos but I'm not sure if that's ok to do. It can cause a fungal infection if you have a weak immune system. I don't but it makes me worry about taking to much of it.


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## MaximilianKohler

Well I've been on disability for chronic fatigue and IBS, and a whole bunch of other problems for about 15 years and I'm pretty sure 1 pill a day of SB is curing me.

Gut bacteria is so important.


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## Oceangirl

I tested positive for SIBO. Do you think it gets rid of the bacteria overgrowth? Did you test positive for SIBO?


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## jaumeb

I am taking 13 billion S. Boulardii CFU a day. I have been taking it for some eight weeks. It has not been a solution to my problems, but I think it is helping. I will continue taking it.


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## Oceangirl

I am taking the Jarrow brand Saccromices boulidari + MOS. I don't know if that makes a difference. I see it at all the health food stores around where I live.


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## jaumeb

Oceangirl said:


> I am taking the Jarrow brand Saccromices boulidari + MOS. I don't know if that makes a difference. I see it at all the health food stores around where I live.


I try to avoid oligosacharides (no MOS for me).

Please keep updating about your progress (or lack of thereof) with the probiotic.


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## Oceangirl

Hello everyone, I finished my antibiotic and so far have been doing really good. I saw on the Jarrow website I can take the saccromices boulidari 2x a day so am going to be doing that.

Also I wanted to mention something I should have done sooner but if you have a lot of diarrhea you really should take a multivitamin. You can lose a lot of vital nutrients and minerals from IBS/SIBO and chronic diarrhea. I am also taking magnesium along with my vitamin. I think it is important to get a whole foods organic really good vitamin not some weak or inefficient vitamin. I have been feeling really really so much even better since I have been taking vitamins. I have more energy and am less stressed. I don't want to plug any vitamin company but I have been taking Kind Organics Women's Multivitamin. I'm sure they have general ones not specifically for women. (Sorry I didn't look) I got it at my local health food store. I also have been taking Rainbow Light Magnesium Calcium+ it's also from food sources. It says to take 3 a day of the magnesium but I just take one or two. So far I have felt a big difference. Whatever you take, you lose so many nutrients from malabsorption, stress, food just rushing through you, SIBO bacteria, etc, I wish I had done this sooner. Even small things can improve your quality of life and is worth it. I got the magnesium because I was reading those with GI disorders are often low in it and it is really important for so many functions. Just wanted to mention this in case it helps anyone!


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## Oceangirl

Oh yeah sorry forgot to mention the multivitamin is a bit expensive. :/ I just really wanted one made from foods and was sick of feeling tired all the time. Also be careful with the type of magnesium since certain kinds of to much can give you diarrhea but I haven't had any so far from what I've been taking.


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## vanilla_bean

Glad something as simple, cost effective, and natural as saccharomyces boulardii has cured or helped so many of you all. It helped my bowel movements a bit, but it ultimately peaked and couldn't help them any more (took Culturelle for 2 months). I stopped the probiotic, and it didn't regress, which is interesting. Only Culturelle and Florastor have helped a bit and peaked; I did not regress after stopping either. It's like they chipped away at the problem. VSL #3 cured me for one month and then I completely relapsed. It couldn't be a placebo, because it would've still worked after one month! I'm almost glad it wasn't the cure, because wow is it is expensive (not covered by my insurance) and it made me gassy while it was working.

Likely about to start Xifaxin or Flagyl depending on the doc's recommendation, we'll see... I have read lots of good things about Xifaxin. Many people take a 2 week course quarterly (every 3-4 months) and find they're cured. Hadn't read about anyone having a hard time, but it sounds like OP (Oceangirl) had a very bad case of IBS - maybe that's why!


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## MaximilianKohler

I had a terrible time with xifaxan. I can't eat meat after taking it. I wish I could go back in time and never take it.

Flagyl didn't have any positive effect on me either.

I also developed some pretty severe heart trouble a few years after, and the s. boulardii is helping that go away.

BTW, florastor was maybe a tenth or less, as effective as the Jarrow brand. So I'd try Jarrow's before any antibiotics.


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## vanilla_bean

MaximilianKohler said:


> I had a terrible time with xifaxan. I can't eat meat after taking it. I wish I could go back in time and never take it.
> 
> Flagyl didn't have any positive effect on me either.
> 
> I also developed some pretty severe heart trouble a few years after, and the s. boulardii is helping that go away.
> 
> BTW, florastor was maybe a tenth or less, as effective as the Jarrow brand. So I'd try Jarrow's before any antibiotics.


I've never heard of such a thing about Xifaxin... How long did you take it? I'm interested since I'm about to try. What's your IBS experience been before it?

Also, maybe I'm ignorant, but it doesn't make any sense that a probiotic in your gut can significantly lower your cholesterol... Surely other life factors may have contributed over the same time span? Perhaps the same can be said about the recent difficulties digesting meat? Any sources, anecdotal or scientific, that either of these things have happened to others?


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## AIRPLANE

I also have tried Florastor in the past- sometimes when I was on antibiotics for something else- like Clindamycin for dental work. Didn't notice any effect. After reading about the Jarrow S Boulardii with MOS here, decided to try it and am about one week in. I know MOS is a prebiotic and I generally avoid those because they can make my symptoms worse, but am taking a chance. According to the information on the bottle, the MOS can 'discourage bacteria from adhering to the epithelial cells and reduce their proliferation.' The Jarrow brand also seems to be much more reasonable cost-wise.

I have been experimenting with various herbal antibiotics for several months.I have not been able to find any gastroenterologists near me who want to deal with things like SIBO. I did have the test at Mayo several years ago after requesting it but they weren't really that into it and didn't discuss the results with me- just said I didn't have it. After I got home I read the test results- don't remember the levels- but it said that I was a non-methane producer, only had hydrogen which does fit in with my tendency towards diarrhea. Also I had been on a very low-carb diet which could have made things look better than they normally were, plus the test is subject to interpretation and also the standards for what is or isn't normal has changed over time. Sounds like there may be a better method of testing in the future.

So far, the Jarrow Saccharomyces Boulardii has tended to increase the abdominal bloating somewhat. It also caused constipation the first few days but I think that it may improve. The past couple of days I haven't had the incomplete evacuation that I usually have so hope that continues. I do think it helps if I also eat some type of high-fiber like brown rice, even though I know rice is high in lead. I may check the health food store for a better rice- maybe red or black- which I hear are lower in lead.I don't tolerate psyllium well. I know that fiber is thought to feed bacteria overgrowth, but at the same time I think that I still need something to add bulk to keep things moving which is also important. Even though I tend towards diarrhea, it doesn't always seem to move through as well as you would think, and incomplete evacuation is a big annoyance.

If this doesn't work out, the next thing I will look into is Lauricidin.


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## MaximilianKohler

I didn't say anything about cholesterol. My heart problems are heart pounding really hard all the time like I've been doing intense exercise. Like usually if you lie down your heart rate drops, but even after waking up in the morning my heart is still pounding. And sometimes it gets really bad, like it feels as if it's being overclocked to the point of failure.

I took xifaxan only for a few days and then stopped because I felt awful.

I'm pretty sure our IBS troubles are from a lack of the right kinds of probiotics. Though the lack of the right kinds can lead to overgrowth of the bad kinds, which is why antibiotics might help some people.


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## vanilla_bean

MaximilianKohler said:


> I didn't say anything about cholesterol. My heart problems are heart pounding really hard all the time like I've been doing intense exercise. Like usually if you lie down your heart rate drops, but even after waking up in the morning my heart is still pounding. And sometimes it gets really bad, like it feels as if it's being overclocked to the point of failure.
> 
> I took xifaxan only for a few days and then stopped because I felt awful.
> 
> I'm pretty sure our IBS troubles are from a lack of the right kinds of probiotics. Though the lack of the right kinds can lead to overgrowth of the bad kinds, which is why antibiotics might help some people.


My apologies, you certainly mentioned nothing about cholesterol... that's what happens when I comment at 2:30 in the morning! I see "heart problems" and my mind read "high cholesterol." 

It does make sense that your heart is being taxed more than normal - your body was stressed out.

I'm still at a loss as to how it has prevented you from eating meat... what are your thoughts?


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## MaximilianKohler

Well protein and fat trigger bile production, so I'm sure it has something to do with that. Protein and fat started causing dark or dark green diarrhea.

I guess the intestines need certain microbes to slow things down.


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## Oceangirl

I really think a lot depends on whether or not you have SIBO as the cause of your IBS as to whether or not to take antibiotics. I took them again for the second time and have had even more improvement. I took them 2x a day this time instead of three and I tolerated them so much better. I took the SB probiotic the entire time as well and had less side effects. The treatment for SIBO is antibiotics. Some people don't like them and can't tolerate them but I think it can help people.

I hope the Jarrow brand helps you. I read a lot of the gastrointestinal journal that doctors read and they said fiber makes IBS worse. The fiber that helps is physilium fiber only. Though I read this made things worse for you. I haven't tried this but in other fiber studies a lot of people even dropped out of the studies since it made IBS worse. I think the SB probiotic took a couple of weeks to really help but after a few days there was some improvement. The other strain that has been shown to help IBS is the Bifodus probiotic. Probably not spelling that right. Haven't taken it but bought some the other day. I think probiotics do help a lot which is why fecal implants seem to be so successful.


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## Oceangirl

Also some people might find the Pimentel diet useful. I seemed to notice an improvement when I was on it during a rough patch. I'll try and paraphrase here.

1. Eat only cooked vegetables. Very little raw.
2. You can eat meats.
3. White bread no wheat or complex breads.
4. Eat easily digestible foods.
5. No fructose, no fake sugar at all only small amounts of table sugar.
6. Small amount of fruit.
7. No dairy

You want things that break down higher up in the intestines. You may want to try this to see if it helps. I've read you can cure SIBO this way but it takes a year on this diet but it can help right away with symptoms.


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## Oceangirl

Also airplane if you don't notice any improvement on other antibiotics SIBO may not be the cause of your IBS. Have they checked you for H. Pylori? Drinking pepto bismo can help a bit for that until you see a doctor and vitamin E. There may be a food intolerance and there is a good intolerance diet you can do to check. Yeast and many other things can also cause IBS.


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## AIRPLANE

One thing that interests me about the Saccharomyces Boulardii is that it is also supposed to be good for C Difficile. When my severe diarrhea began I was working in a nursing home doing laundry so I certainly could have been exposed to it. I had previously been on several rounds of Tetracycline for persistent acne in my 20s- it only helped the acne while I was on it, then the acne always came back. I am also reading that C Difficile doesn't even require hospital exposure- that some of us already have the C Difficile bacteria in us but they are kept under control by good bacteria unless something like taking antibiotics messes things up.

I did once have a very rapid improvement of symptoms that lasted about two weeks. It was after an exploratory laparoscopy. I ended up taking some kind of antibiotic- don't know which one- because my kidneys must have shut down as I couldn't urinate at all. This was back in the early 1990s and there was no talk about SIBO back then. My stomach became half its size and the gas and diarrhea issues totally stopped. I know that sometimes an antibiotic that may have worked before won't work again due to antibiotic resistance and biofilms that protect the bacteria.

So obviously something is going on, just don't know what. Unfortunately no gastroenterologists in my area are interested in this type of stuff. An upper endoscopy a few years ago did show an inflamed duodenum but I was told I didn't have H Pylori. He didn't give me any chance to talk about SIBO. He suggested acid-lowering drugs for the inflammation but from what I've read those generally cause more problems lower down- like SIBO. And taking them gives me very sharp, stabbing abdominal pain so I said no thanks. Who knows maybe the inflammation could be SIBO related. I read in Dr Pimentel's book that if it is bad enough, SIBO can be a problem as high up as the duodenum.


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## Oceangirl

That's very interesting. Have they done all the stool cultures to make sure you have nothing infectious? There seems to be a connection between taking a lot of antibiotics and developing problems later like IBS and IC. I took a lot of antibiotics when I was younger. I also saw a neuropathic doctor who did a stool sample that tests for tons of different bacteria. I was low in Bifodus and something else which escapes me. I really hope the SB probiotic helps you improve some. Some people with SIBO don't make enough stomach acid so they take Bentaine HCL. My problem was to much acid from all the stress I had being sick. So I had a constant stomach ache as well. I also still take the Cystoprotek since it lowers mast cell and inflammation in the body but it's really for your bladder so don't know if it would help IBS. I read flax seed and certain oils can lower inflammation. Some oils can cause diarrhea though. Tumeric lowers inflammation I haven't tried this yet. Also some people also show symptoms of Chrons diseases for years before evidence of it shows up. A wise doctor can treat someone as if they have Chrons if antibiotics and no other treatments work. There also is always doing a fecal implant from a healthy donor but there is a lot to it. They have to be tested for diseases and be on a certain diet before they donate. I also think we have so much bacteria that we don't know what they even all are. Some die in the air so it could be a pathogen that they don't know is making people sick as well.


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## AIRPLANE

I haven't had any stool testing done since the 1980s or maybe early 1990s. Not sure what they looked for, but it might have been for blood or parasites. None of the many Drs I saw were interested in looking for causes of my symptoms- they liked to maybe rule out cancer with a colonoscopy and if that was clear it was IBS and they were done with you. I remember having a couple of barium enema xrays which were very painful because I always had such cramps and spasms that it was difficult to hold the fluid in while they took pictures.

I had hoped that Mayo clinic would be more proactive in looking for things but they were only interested in pelvic floor dysfunction. I'm not saying that PFD isn't an issue for some people but I didn't feel that it explained all of my symptoms- the loose, foul stools and the abdominal bloating. They really didn't spend much time asking me about my (now very long) history of this and what I had already tried. They wanted me to do a two-week biofeedback for PFD but even if I thought it would help I couldn't afford the cost of $9,000.00+ since my insurance wouldn't cover it. I had already gone to local physical therapists who said that biofeedback wouldn't help me, and one of the PTs was said to be the best for pelvic floor issues in my region. They all agreed that my abdomen was very hard, which is one thing that SIBO expert Allison Siebecker mentioned in an interview. She said that some people have very visibly distended abdomens, while others' abdomens are just very tight from the bloating. It is possible that I could have issues in the large intestine but that doesn't explain the abdominal bloating since I don't have constipation. I may have incomplete evacuation issues but I attribute that to stools that are loose and not well-formed. If I can get things to be better formed then incomplete evacuation isn't an issue. But it seems like many Drs consider incomplete evacuation to be the same thing as constipation which it is not.

Yes- it would be nice to find a local naturopath to order more detailed tests- like a CDSA (comprehensive digestive stool analysis), maybe an organic acids urine test. Those tests don't diagnose SIBO but can detect things that cause suspicion of it as well as other things. I know that you can order these as well as a mail-in breath test yourself for a hefty cost but then I would still need someone to interpret the results and direct treatment so I haven't done so. And with the breath tests supposedly not being completely reliable anyway, I have to wonder just how good a mail-in version like the Quintron one would be as opposed to having it done in an office.


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## Oceangirl

My stomach would get huge like that and really hard. It was hard all the time. Even after my diarrhea stopped I would still bloat up until this most recent round of antibiotics. I got tested for SIBO using the breath test the neuropathic doctor ordered and I think as long as you follow the instructions you should be ok. The test was 100 and something dollars I can't recall. It was around the same for the stool test. I went to Genova Diagnostics and they refer you to doctors who will do the test. I called all of them and went to the cheapest person who sounded nice. The initial visit was close to 200 and the after visits were 90. He suggested the saccromices boulidari to me. I tried a lot of different things he suggested. Some helped and some didn't. They also do food allergy testing but I've read some people think the test is not really legitimate. It would be good to try and get everything checked out again. I've had a lot of financial problems paying for all of this stuff myself so I know it isn't fun. Insurance helped me pay for the antibiotics since my new doctor is better than my old one and I pushed him to give them to me the first time when I got the SIBO results from the doctor I paid for. He later read Pimentel's book so now offered me this second round with no trouble. (I have a doctor through insurance and the neuropathic doctor I paid for.) I would try maybe the diet I mentioned and see if it helps. If you improve a lot then it would be a big clue you may have SIBO. I always got worse after I ate and I could never pin point what it was until I tried the Pimentel diet. I noticed an improvement after a few days. There is always the vivonex diet for 2 weeks. I looked into buying absorb plus but it's also expensive and you can only have unsweetened vanilla and they have been out of it for almost 2 months now. I ordered a sample and have been waiting forever. It's supposed to be good for any digestive problems. The absorb plus had no fake sugar like some of the other vivonex diets and seemed the healthiest. I wanted to try it because I was sure I was malnourished. It's supposed to taste gross. I can't comment since I've been waiting for the sample forever. The vitamins I take now have helped me a lot though. Chronic diarrhea makes you feel awful in many ways so vitamins can help a bit. Low stomach acid can cause SIBO as well and he told me to try Bentaine HCL. Since the PPI's made you sick maybe you have low acid? You take one of the Bentaine HCL pills and if you don't feel anything then your acid is low and you increase your dose until you feel an effect then lower the pill by one. I had the opposite problem so they made me feel really acidy. I can tell you everything he told me to try if it saves you money haha but of course it's good to get checked out for everything.


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## AIRPLANE

Thanks for the information. Yes, this condition can get very expensive. I have purchased so many supplements over the years that my shelves look like a drug store. Plus it is difficult to go to Drs when you have a full-time job because most Drs work the same hours that I do and they aren't always conveniently located. I will look at the Genova site. Think when I visited the Quintron site that they required a phone# which I passed on because it wouldn't really work if I am at my job. Don't know why they couldn't communicate via email for convenience.

I have also read about a new test in the works which will test for something called vinculin antibodies. Supposedly Dr Pimentel is working on this. Think it is going to be a blood test.

I don't know if you've read about biofilms as a possible cause for the difficulty in eradicating things like SIBO. I tried a product called Interfase Plus which is supposed to break down biofilms. But I couldn't tolerate it as it caused worsening of my symptoms. It could have been a case of things getting worse before getting better but I only managed to take it for a couple of days. It does contain eggs and I did once test positive for a reaction to egg whites and avoid eggs because they do bother me.

I am also taking Jarrow's Methyl B-12 since I have read that those of us with these problems can be deficient in it. Hoping it will help with energy levels.


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## Oceangirl

Oh yeah I carry a huge bag of meds and supplements around with me everywhere. I also have anxiety and interstisal cycitus. Possibly fibermialga. That is really interesting about biofilms. I will look up info and read about it.


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## jaumeb

Oceangirl said:


> Oh yeah I carry a huge bag of meds and supplements around with me everywhere. I also have anxiety and interstisal cycitus. Possibly fibermialga. That is really interesting about biofilms. I will look up info and read about it.


The two of us might have some things in common. I remember I also had urinary problems. They are getting better lately.


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## Oceangirl

Yeah the Cystoprotek helped me a lot. They think a lot of these diseases are caused by inflammation in the body. I got some udos oil a while ago because it has so many anti inflammatory properties but it gave me diarrhea. I started taking Bifidus a couple of days ago but I think it's giving me some diarrhea so I'm not going to take it anymore. It's clinically proven to help IBS so I don't know. I have SIBO so I have to be careful about probiotics. The SC gave me some mild diarrhea but it stopped doing it after a bit and helped a lot. Even when I have yogurt or anything it brings on diarrhea. I read a lot about anxiety. I get panic attacks and there is no real way for you to communicate with the lower survival parts of the brain that are causing the attack to happen. So it seems daunting to find a way to stop them. I take meds and do certain techniques that help but as far as stopping them completely I have been at a loss.


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## jaumeb

I always say that there is a brain-gut axis. Our brains don't work properly when we suffer digestive problems. I am following the SCD diet which is also used for autism and other psychological disorders. It has not cured me, though.

Now my hope is that combining boulardii and Aglae Jacob's protocol I can recover. This is what I have been doing for the last months. No recovery yet.

I may give glutamine a try as someone just recommended it to me.


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## Oceangirl

Yeah I took Glutamine for a while. I didn't notice anything really but it could just be me. The enteric coated pepermint did help me a bit but the dr. said I can't take it with Prilosec. My symptoms are so mild now I can just take pepto bismo as needed. I hated Ammodium. I would have to go really bad and then couldn't and it was 10x more painful and ended up in ER but a lot of people like it.


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## kpat

Oceangirl- This is fantastic news. Great job in dealing with your IBS.

I think the two things that really must have helped is the antibiotics followed quickly by Saccharomyces boulardii.

I know s. Boulardii inhibits growth of bad bacteria and yeast. It also has some research behind it that suggests it helps digestion... Something about producing amylase and other enzymes. Go figure.

Similar to you, I took betaine hcl for some time until it started to give me acid reflux.

Anyway, some questions if you don't mind answering! 
What was your dosage for S. boulardii? 
Do you still take it? 
Can you tolerate milk and sugar?


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## Oceangirl

Hello, I'm so sorry I didn't see your reply until now. I just take one pill a day of the SB + MOS. It's 5 billion SB and 200mg of MOS. I take the Jarrow brand and they have it at all the health food stores where I live. Sometimes I do take 2 pills lately but it's random. I still do take it every single day.

I can have milk and sugar but I'm nervous about the IBS/SIBO coming back so I try to limit the milk especially but I have pigged out on sweets and cheese etc at times and I didn't get sick. It still makes me nervous though haha.

After I took the Neomycin and Xifaxan this last time I improved even more. No more bloating. The combo works good but there's side effects and I had to stop the Neomycin because it burned so bad. Down my intestines and stomach was like I had swallowed battery acid I took it as long as I could and finished out the Rifaxamin and I have been in no pain at all lately so am very happy. It's hasn't been that long but hoping things continue this way.


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## vjsingh8888

Hi everyone....I am new to this community. I am a 24 year old male suffering from Ibs d from the past eight years. Can anyone tell me does saccharomyces boulardii or Xifaxan have any side effects or anything?


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## MaximilianKohler

vjsingh8888 said:


> Hi everyone....I am new to this community. I am a 24 year old male suffering from Ibs d from the past eight years. Can anyone tell me does saccharomyces boulardii or Xifaxan have any side effects or anything?


Pretty sure we answered that in this thread already.

I had very negative affects from xifaxan, and regret taking it, but OceanGirl seems to benefit from it.


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## jaumeb

Start S. Boulardii with a tiny dose and then slowly build up to a therapeutic dose. Some people have allergies or bad reactions to it.


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## vjsingh8888

MaximilianKohler said:


> Pretty sure we answered that in this thread already.
> 
> I had very negative affects from xifaxan, and regret taking it, but OceanGirl seems to benefit from it.


Thanks for replying

I'll consult my doctor in that case


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## MaximilianKohler

I'm pretty sure that in my case S. Boulardii was only giving me the great benenfits because I was taking it with Align, and possibly even immodium had a big affect, but I'll update in the future when I'm sure.


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## Oceangirl

Let us know how things go with the SB.

Everyone is different so it's hard to predict what side effects you will have. Saccromices Boullidari is not good if you have a weak immune system since it can cause a fungal infection. If you aren't suffering from any bad immune disorders then that's not usually a concern. My doctor said it was fine for me to take. Everyone is different though. I've been taking it for a long time and can't really handle any other probiotics and it helps me a lot. Every other probiotic I've taken gives me diarrhea. When I take SB along with something not on the IBS diet I don't have any bad effects from the food. You are supposed to take it only once or twice a day though.

I have been doing even better after the Xifaxan and Neomycin combo. Not bloated at all. No pain. Still taking the SB everyday and my Prilosec (amytriptaline for anxiety) and vitamins and that's it. Oh and also still taking the cystoprotek. I feel completely normal and have no lower abdominal pain at all. Hope things continue to go well!


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## AIRPLANE

Thanks for keeping us updated. I am still taking the S Boulardii as well. I am one week into trying an herbal protocol. I am taking Metagenics Candibactin AR and Candibactin BR. There was a clinical trial awhile back at Johns Hopkins where they tested these products, also a couple of Biotics Research products. They tested these against Rifaximin. The herbals did just as well as the Rifaximin, and even helped some patients that didn't respond to Rifaximin.One thing that the study didn't test for was whether the Metagenics or Biotics Research brand was more effective.

It's too soon to tell how well this will work. But I do notice some difference in my stubborn, tight abdomen. I think that bloating causes other symptoms because it puts so much pressure on the surrounding organs and can cause pelvic pain and acid reflux. I am working my way up to the maximum dose, which is 2 tablets/capsules of each 3x daily. The S Boulardii helps with the diarrhea that can become worse during treatment. My plan is to take these until they run out, and depending on how things go, maybe try the Biotics Research products next. Except for Thyme, the two brands use totally different ingredients. It is thought that rotating the herbals is a good idea to prevent antibiotic resistance. There is some disagreement about whether herbals can lead to antibiotic resistance the same way prescription products do.

Ideally, I would have liked to try Rifaximin but it requires a prescription and the Drs in my area don't know much about SIBO or have anything to do with it. And with the negative publicity about antibiotic resistance, they are likely even less willing to offer them unless they think they are absolutely necessary. If it were up to me, I would have done a course of Rifaximin, followed up with herbals for maintenance.


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## jaumeb

AIRPLANE, yours is a very interesting experiment. Please keep us updated.

My current experiment is diet + boulardii + glutamine.


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## Oceangirl

Let me know how that works. My nueropathic doctor said that he's tried to treat SIBO with herbal treatments but it wasn't enough to kill it but you may be using something different than he tried. On the absorb plus website they kept saying something about wild oregano for SIBO. I've never tried it. The vivonex diet is supposed to be as good as the antibiotics but it's really hard I imagine to do.

My first doctor wouldn't give me antibiotics and when I asked him to look at Dr.
Pimentel's work he just said I've never heard of that treatment I have no further recommendations. That doctor was horrible I was going to the ER, having 15 BMs or more a day and for a year he just told me to take Ammodium. I had to argue with him even to let me try Bentyl! I ended up asking for it in an ER visit and they said that was a great idea to try it. He was so sure it was all stress. He even put some personal information on my medical chart that had nothing to do with my health problems and I didn't even know he'd done that for a long time. Sorry ranting haha but I got a new doctor and he actually read Pimentel's book and helped me a lot. I also saw a nueropathic doctor to give me the SIBO test. He would have prescribed the antibiotics but it was crazy expensive. So thankfully my new doctor let me try it. I don't know if changing doctors or seeing a new GI doctor would work for you. It's really unfair people have to suffer and not get the trearments they want.

Really glad the SB is helping. Taking it with any antibiotics I think helps a lot and protects you from getting a C.Diff infection. I read that Rifaxamin doesn't create a resistance because 99 percent of it stays in the GI tract but a lot of doctors don't know anything about it.


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## Oceangirl

I agree the bloating causes so much pain and hurts all your other organs. I already had a bladder problem so it would kill me when I had SIBO. It is the worst pain. I have really bad cramps to, I think I have endometriosis and nothing hurts as bad as the SIBO pain. Nothing. I wish doctors understood how incredibly painful it is. I kept going to the bathroom so much I was so sore and then going again and again was agony. I thought sometimes if I didn't get better and had to live this way for the rest of my life I think I would have rather been dead. I'm incredibly grateful to my new doctor for helping me and believing I wasn't just crazy and having stress. Stress cannot make someone that sick I don't think its possible unless you were actively being tortured or something.


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## annie7

as some of you probably already know, Rifaximin is currently under investigation by the FDA for approval for IBS-D and IBS related bloating. i keep seeing different dates for this--the february date has certainly come and gone-- but it's supposed to be sometime during the first half of 2015.. my gastro doc told me hopefully in may.

http://www.iffgd.org/site/news-events/news/industry-news/rifaximin

Airplane--maybe you could get your doc to prescribe it for you once this happens--especially if you have an IBS-D dx or maybe even if you don't. i'm hoping that an approval like this will at least result in more insurance companies agreeing to pay for it for people. fingers crossed mine finally will even though i'm not IBS-D. i sure do have the bloating though lol...and SIBO....


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## Oceangirl

Oh yeah I've been looking into that. Really exciting if it gets approved. From what I saw a couple of months ago the study is finished and the results haven't been posted yet.

The Neomycin and Rifaxamin are supposed to be good for IBS-C I believe. The neomycin was really hard for me to take but it worked really well.


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## annie7

yes, that is supposed to be a good combo. I took neomycin once a long time ago for another problem and unfortunately had permanent ototoxic side effects from it. it made my tinnitus much worse plus some hearing loss as a result. never again....wish I could take it.

my insurance denied rifaximin essentially because I was going to be using it off-label. my gasto doc's next choice for me was cipro but I have health problems that make cipro a bad choice for me too. so i'm on augmentin--just started it.

if augmentin doesn't work, I might decide to pay out of pocket for rifaximin but oh yes, it's expensive--$670.00 for one course of it is what they charge around here. I could do it one-time only but that's it. can't afford to keep doing that if my SIBO keeps recurring, which fingers crossed it won't.


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## Oceangirl

Oh man that's terrible. I know neomycin can have some bad side effects. I was worried about it but I could only take it for four or five days so thankfully nothing seems to have happened.

Have you considered going on the vivonex diet?


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## annie7

oh yes i've read about it and how successful it is but i am extremely thin with a BMI of 17.68. and i have osteoporosis. my primary doc has been wanting me to gain weight for quite a while now and i've been trying but can't seem to --possibly because of SIBO, i'm thinking.

did you mention earlier that you were going to do that (vivonex) ...can't remember..


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## Oceangirl

I was going to try it but I got the antibiotics instead. You can actually gain weight on the vivonex diet if that's your goal. It's supposed to give your whole digestive system a rest to. I heard the taste isn't that great though. I would google absorb plus and just read about it if you're interested. Their website has a lot of info on elemental diets in general even if you don't get that brand or even end up not trying it, it talks about how you can gain weight if you can't keep your weight up due to digestive issues.


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## annie7

that's interesting--thanks. didn't know you could actually gain weight on it. i'll have to read more about it from their web site, like you suggested.thanks. i have mitochondrial disease so not sure how i'd do on a liquid diet. plus my problem is chronic constipation and pelvic floor dysfunction etc (not ibs) so i imagine a liquid diet could aggravate my C a bit...


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## AIRPLANE

I am also taking digestive enzymes with meals. I have tried enzymes in the past and actually felt worse. However, now that I am doing something to address the bacteria, I seem to be OK with them. I have read that SIBO could possibly destroy the ability to produce our own enzymes, which could be one factor in SIBO recurrence. So it might be a good idea to take digestive enzymes permanently.

Here is the latest information from SIBO expert Dr Allison Siebecker. Along with Dr Pimentel, she is the top expert on SIBO. She is a naturopath. As the article mentions, they are working on a test for a third type of gas, hydrogen sulfide.

www.http://www.townsendletter.com/FebMarch2015/sibo0215.html

Annie, it also mentions that some Drs prescribe metronidazol instead of Neomycin. Maybe you would tolerate that better. And yes, if Rifaximin is approved for IBS, Drs really have no excuse for not offering it. I don't think that a SIBO test should even be necessary. I have been told that I have IBS.


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## Oceangirl

Annie7 sorry to hear that sounds like you're going through a lot.

I thought about taking enzymes to but haven't taken any yet. Yeah I am looking forward to the results. Doctors won't just be able to blow us off anymore.

I'm still waiting for my sample of absorb plus. It's ridiculous they've been out of the unsweetened vanilla for almost 3 months now.

Also Annie7 you can add an elemental diet to your regular food that way you get some added calories if SIBO is preventing you from absorbing your food correctly.


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## annie7

Airplane---yes, that issue of the Townsend letter is terrific--so much helpful information. i printed the whole thing out when you posted it earlier and have been studying it. so helpful--thanks.

and yes, thanks--i've read that metronidazol can be very effective. if augmentin doesn't help or my SIBO comes back, i'll ask my doc about metronidazol if he doesn't suggest it.

Oceangirl--thanks so much for starting this thread! it's been so helpful. and yes i was thinking i should maybe try adding an elemental diet drink to my regular diet. that's a good idea. i think i'm going to send for the sample, too. so they're out of unsweetened vanilla? that's too bad. i can't do chocolate. love it but it aggravates my reflux so no chocolate for me.







.

i have a question- what about taking probiotics after treatment? good? bad? i've read so many conflicting viewpoints. i plan to ask my gastro doc about it once i get to the end of treatment but was wondering what you two and the others on this thread think. thanks!


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## MaximilianKohler

Odd that you would have read conflicting info on taking probiotics after antibiotics.... It's extremely vital that you do. You just have to find the right ones.


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## annie7

yes, thanks--that's what i thought, too. and what many people advise.

someone on here posted about this awhile ago and said he had read that Dr. Pimentel has said don't take probiotics right after treatment because that can make sibo come back-- that you don't want any bacteria--good or bad--in the small intestine. unfortunately, that poster did not provide a link to this information.

other people have said that Dr Siebecker says the opposite--that you should begin probiotic therapy right away after treatment..


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## AIRPLANE

I think that the reasoning behind not using probiotics is that, even though you have cleared up the bacteria in the small intestine, that whatever caused it to accumulate there in the first place is still going on- or whether the migrating motor complex is working correctly. If not, it sounds like SIBO will return sooner or later and the thought about taking probiotics is that it will come back sooner rather than later. There does seem to be some disagreement about just what or how much bacteria should be in the small intestine. Some experts say that it should be very sterile, while others say that some bacteria is normal.

I don't think that anyone really knows a lot about the small intestine because it can't be as examined as thoroughly as the large intestine. They can only check the very beginning and end during scopes. There was a story last week about a pill-cam type device in the works, sort of like the one that they use in place of a colonoscopy but for a different purpose. Supposedly it can detect different types of gasses along the way so you would not only know what types of gasses are being produced, but also exactly where they are being produced. Even if this becomes available I imagine it would open up a whole new area of research and it would be like starting from scratch trying to figure out what is normal/beneficial bacteria in the small intestine since it has been so inaccessible for study.

I do worry a bit about the affect that treatments for SIBO could have on the large intestine, which does require bacteria to function well.The antibiotics could mess that up and we do know about antibiotics and C Difficile (good reason to take S Boulardii). The problem is that you can't treat one part of the digestive tract without it affecting the others.


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## jaumeb

annie7 said:


> someone on here posted about this awhile ago and said he had read that Dr. Pimentel has said don't take probiotics right after treatment because that can make sibo come back-- that you don't want any bacteria--good or bad--in the small intestine. unfortunately, that poster did not provide a link to this information.
> 
> other people have said that Dr Siebecker says the opposite--that you should begin probiotic therapy right away after treatment..


I read some testimonies of people having negative reactions to probiotics. Probiotics can be very helpful but, at the same time, one has to be careful with them.


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## annie7

yes--it all seems so tricky. i've read about the negative reactions to probiotics, too.

i agree with the points you made, Airplane, about the small intestine and also about the possible effects sibo treatments could have on the large intestine. and yes--that pill cam device is very interesting.


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## Oceangirl

I'm so glad this thread has been helpful. The reason for the unsweetened vanilla is because it doesn't have fructose like the other flavors which will feed SIBO bacteria. I was reminded of my missing sample so I sent them another email and they said it will be in May. I think they gave me a prior date before so we'll see.

I remember reading about another person on the forums who kept relapsing with SIBO and so he decided to not take probiotics after an antibiotic treatment and he believed he was cured. It's another individualized thing I think. Some people improve on probiotics, some don't. The danger is that you're recolonizing your system with bacteria when the problem is you had to much bacteria before. The other idea is that you take the probiotics and they are supposed to prevent bacteria from repopulating in the small intestine. It also really depends on why you have IBS.

For myself I cannot tolerate taking probiotics. Even in small amounts and building up etc, I start getting diarrhea again. So this time with the antibiotics I decided no probiotics except for my Saccromices Boullidari + MOS because it is a yeast probiotic which has the purpose of preventing bad bacteria from growing and attaching itself in your body.

I read Bifodus strains are clinically proven to help with IBS but I got diarrhea so stopped them. I've read some strains of probiotics definitely make IBS worse. VSL-3 is supposed to work but my GI doc said its only clinically proven to help children.

Some people greatly benefit from probiotics but I think it's not a good idea for me at all and could make me relapse. I've done much better not taking the probiotics this time around. (Except SB)

I think the exception to this is fecal implants since it doesn't go through the small intestine and you get a lot of beneficial bacteria, more than we can even buy at the store and I do believe some of them also can balance your system and kill off excessive unwanted bacteria that are causing problems, which is why it is so sucessful for bad C.Diff infections. I think it can return certain bacteria to you that may have been lost due to antibiotic use. I always have fecal implants in the back of my mind as a last resort if I became very ill again.

I think with anything there is a risk. If you think about SIBO your large intestine isn't working properly since it is rushing food through you or it's motility is slow so getting rid of SIBO will help your whole digestion even in the large intestine. Also there could still be some kind of pathogen they can't culture that could be making some people sick so using the antibiotics can get rid of it as well if it is in the large intestine. Pimentel believes all our bacteria will grow back in the large intestine after the antibiotics. I have read there can be fragile kinds of bacteria that antibiotic treatments could permanently kill off that are beneficial but I assumed that would have already happened to me from all the antibiotics I've taken in my life.


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## annie7

oh yes--i stay away from fructose. hopefully the unsweetened vanilla will come in sooner than may.

thanks, Oceangirl--you brought up a lot of good points.

i am concerned that despite treatment, my sibo will keep coming back. about eighteen months ago i had to have an emergency right hemicolectomy due to a cecal volvulous. my surgery was open abdominal. the surgeon removed my ascending colon and half the transverse colon as well as about five inches of terminal ileum. i not longer have an ileocecal valve and i've read that removal of this can cause sibo. x-rays after surgery showed large amounts of gas everywhere including the small intestine and while the gas has diminished somewhat since then, it's still worse than it was prior to surgery. and what's left of my colon is still quite slow..it didn't work before surgery and it doesn't work now lol..


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## AIRPLANE

Same here regarding probiotics. I spent a lot of $$$ on several different brands, some were pretty pricey like the Natren brand. Definitely did not tolerate the ones with prebiotics and it seems like the majority of them now contain those. The last one I tried for any length of time was one by Renew Life that was prebiotic-free. That one didn't seem to cause me any adverse effects but I didn't have any improvement either. This was before I started experimenting with herbal antibiotics.

In the Townsend Letter link, there was some mention of studies done with some probiotics as a SIBO treatment. One was called Bacillus Clausii. I read a post on here somewhere awhile back where someone asked about it, and someone replied that it was used as an ingredient in cleaning products which of course didn't sound good. The other was a 4-strain combo called Bioflora. I tried searching for it but it apparently is made in Argentina and not available in the US. It was under the brand name of Biosidus. I suspect that one of the strains, Streptococcus Faecalis, might not be approved in the US as I couldn't find it in the ingredients of any probiotic. The webpage I found the Bioflora on wasn't in English, only Spanish so couldn't read the information on it. There was a Bioflora probiotic on Amazon but it wasn't the same one- totally different ingredients.

The Townsend Letter also mentioned that they had found lactobacillus in SIBO patients, which I take to mean is something to avoid. I have also read that Lactobacillus Acidophilus, in particular, has not been a good probiotic for SIBO patients to take. But that one is a very common ingredient in most brands.


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## Oceangirl

annie7 that sounds rough. Dr. Pimentel says after a round of the antibiotics some patients need to stay permanently on a very low dose antibiotic every single day. I believe it was zelnorm, erithomycin or a low dose of rifaxamin.

I will look around and see if there is another good elemental diet. I liked absorb plus because it didn't have fake sugar and was all natural ingredients but it seems they have a huge problem with keeping it in inventory.

Airplane I think Lactobacillus Acidophilus was the one I read was bad for SIBO. It's in yogurt and I cannot tolerate yogurt either. I haven't got a chance to finish reading the article yet. I to bought some pricy probiotics. After the first dose of antibiotics I started taking probiotics and started bloating up crazy bad and had lower abdominal pain every day. Now that I didn't take any other ones after this second round I feel like I'm doing so much better. I would not recommend taking them at all if you have SIBO but I certainly can't speak for everyone and some people have been helped by them. Sounds like they've been doing research into some specific strains that might help though. So maybe there are specific ones like the SB that don't cause diarrhea.

I read something interesting that our bodies make a benificial bacteria from trace amounts of basically dirt that we eat from fruits and veggies but that all of our produce is so clean we aren't getting enough and our bodies adjusted through evolution to digest small amounts of soil. I read they have soil based probiotics but I haven't taken them and don't know anything else about them.


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## annie7

yes, thanks...i agree--i probably will need to be on antibiotics more or less permanently. which i why i really wish my insurance company would pay for rifaximin. oh well--not to give up hope. maybe once it gets FDA approved, i'll have better luck.

Dr. Siebecker has a recipe for making your own elemental diet on her website but it looks tricky and i'm not even sure the ingredients are readily available. (???)

http://www.siboinfo.com/uploads/5/4/8/4/5484269/homemade_elemental_diet_options.pdf

i really cannot afford to be on absorb plus full time--just drinking some as a supplement to a regular diet.


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## Oceangirl

Oh yeah me either. It's mosty to do for 2 weeks to get rid of SIBO and I imagine it would be a good supplement.

I did see something about making your own but it looks to complicated for me lol.

Is it your doctor who won't use it or the insurance? It's not FDA approved but my doctor prescribed it for me anyway. It depends what insurance you have but doctors can perscribe anything they think is beneficial. They perscribe many things that aren't FDA approved for it's particular use. I'm just wondering if the insurance won't pay for it even if your doctor prescribed it or if your doctor doesn't want to perscribe it.


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## annie7

oh no--it's most definitely not my gastro doc.

he prescribed it for me. his office rx's it all the time for SIBO. he wants me to take it. it's my insurance company. my gastro even submitted a prior authorization to my insurance company saying that rifaximin is a medical necessity for me etc but, like i said earlier, insurance denied coverage essentially because it was being used off label, saying that they only approve it for patients who have hepatic encephalopathy who have failed other treatments etc. i know other people have had the same problems with their insurance denying rifaximin. and i can't afford better insurance.


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## Oceangirl

Man that's terrible. Well when it's FDA approved then hopefully you can get it. Unbelievable how insurance companies are. Your GI doc sounds good.


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## annie7

yes, he is good--he's stellar. he works at a university hospital and is very knowledgeable, up-to-date and caring. he actually listens to me. i love him and feel quite fortunate to be his patient. he only takes us complicated cases lol..my other gastro doc and my colorectal surgeon referred me to him.

he does a lot of research too. he has actually done research for salix and ran clinical trials on the role of rifaximin and the management of ibs.


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## AIRPLANE

Yes, I sure hope that the FDA approval happens soon. It seems like it is taking forever because I have been hearing about how they have been trying to get it approved for years. With IBS being so prevalent it doesn't make sense. Sometimes you wonder if there are some suspicious factors in play here. Maybe Rifaximin has worked too well and would be bad news for other drugs that would no longer be needed as much. Sort of like what is going on with the labeling of non-GMO foods. Monsanto and Dow know what happened in Europe where they generally provide this labeling. Their GMO foods suffered a decline in sales and they don't want to see the same thing happen in the US. That is why they have paid big $$$ to fight passing laws in states that would require GMO labeling. Big companies with lots of money can use their power to influence things like this. Of course, I also don't think very much of our insurance companies either.

It makes me cringe when I read so-called experts scoff and criticize things like SIBO and Rifaximin when they have no better ideas. Sure, it won't work for everyone. But unless its use is clearly contraindicated for a patient, we should have the right to try it. And there will always be some patients who will have a negative reaction to just about every drug, but that doesn't mean they never get prescribed unless they turn out to be life-threatening, which is what happened to the prokinetic drug Zelnorm as Annie knows.

Annie, would you still be able to get Rifaximin from Inhouse pharmacy? Also, has your Dr discussed following up with a prokinetic like erythromycin or Low Dose Naltroxone? I think that they usually only prescribe those if the antibiotics work, and use the prokinetics to reduce the chance of recurrence. Not sure if they ever use them at the same time as the antibiotic treatment although I know that some patients have tried it.


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## annie7

oh yes, i've thought of that. inhouse requires scripts for everything now. I think i'd rather try to get it from canada drugs.com. more expensive but they have "real" rifaximin and not the generic that inhouse carries. although the generic sounds good--reliable. there is a generic for rifaximin available in other countries. there was an Inspire thread on all this quite a while ago, the woman saying that she got her rifaximin (generic) from inhouse . she posted this link about generic rifaximin. Lupin is the company that originally developed rifaximin jointly with salix. they sold the rights to rifaximin to salix. she said it worked fine for her.

http://www.news-medical.net/news/20110406/Lupin-grants-Salix-exclusive-worldwide-rights-to-rifaximin.aspx

I know my gastro has given people scripts to use with canada drugs before. we've discussed my getting prucalopride that way. from what I've heard, getting meds from Canada drugs can take a while. they're slow. but anyway, i'm thinking he might prefer i use canada drugs over inhouse. not sure what he thinks of inhouse. i don't know....i've have to discuss it with him.

yes, following treatment up with a prokinetic was mentioned. right now I'm on laxatives to control my constipation.


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## Oceangirl

That is great annie7. I feel so grateful to my new doctor for taking the time to read Pimentel's book and believing me when I said I was sick. He really goes above and beyond and even looked up every ingredient that was in my big bag of supplements to make sure everything was ok. I have an insurance that wants to just have a 10 minute appointment and go but he's listened to me a lot. He let me try things I suggested might help me. He was totally open to working with my nueropathic doctor to. Anything that could help me he was willing to do. My other doctor before him was so arrogant he just already knew everything and wouldn't even consider anything I suggested or look into it. He graduated from Yale to! He totally believed IBS is just from stress and told me to go to counseling. That's really cool your doctor has been doing research.

What I've read about the studies is Rifaxamin didn't get FDA approval because they needed to see how it worked for people who needed to take it more than once. So that led to another study about retreatment that they just finished. So as far as I can see there should be no reason it's not approved as long as the study was a success.


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## annie7

that's wonderful you have such a terrific doctor! that really makes all the difference, doesn't it.

oh yes--i think it will be approved. it all sounds very promising.


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## AIRPLANE

Oceangirl,

Thanks for the update on the Rifaximin study. Why these things take so long to complete is beyond me.

I wanted to update a bit on my herbal antibiotic protocol, the Candibactin BR and AR which I have been on for about a week. I started the Candibactin BR last Friday and the Candibactin AR when I received it on Monday.

Last Saturday morning I woke up with cramps at 5 AM. It felt like diarrhea was coming but it took several minutes for anything to happen, which is unusual. I spent about a half-hour in the biff until the cramping finally subsided and I went back to bed feeling very weak and ended up sleeping until noon. I will say that I over-ate the previous day, much more than usual which probably wasn't a good idea, especially being that I was beginning the new protocol. But I felt fine for the rest of the day. I might have already mentioned this.

As I previously mentioned, I had a very dramatic but brief reprieve of symptoms about 24 years ago. I can vividly remember how it happened so I am comparing what I felt then to what I have felt more recently, and hope to feel at some point, using this current protocol.

One symptom that I have had since my IBS started is a lot of fluid retention. Not just in my midsection but everywhere- arms, legs. It made no sense that I gained weight since I was now eating so much less, and everything that I ate went straight through me. Drs insisted that I didn't have edema when they would tap my ankles. But it turns out that there are several different types of edema. I did read somewhere that a Dr Leonard Weinstock, a gastro who treats SIBO in St. Louis, MO, said that peripheral edema sometimes does occur in advanced cases of SIBO.

I previously mentioned that my brief reprieve from symptoms back in 1990 or 1991 happened after an exploratory laparoscopy. I didn't know why I got better but now suspect that it was due to either some antibiotics they may have used during the procedure or the one I took when I totally stopped urinating 2 days after it.

What I first noticed back then was that my stomach started feeling softer. I also was even more aware of the edema and my clothes actually fit tighter for a couple of days- I think the fluids were trying to move out. I think that this might be happening now. Then one night while laying in bed, I could hear and feel a lot of fluid moving. I felt it first in my chest, then there was a brief, scary moment where it felt like a rush of fluid headed upwards towards my heart. Almost what I imagine a blood clot might feel like but then with all the CTs and stuff I had had over the years that must not have been the case or they would have found it. My bloated abdomen quickly subsided. Shortly after that I had to run to the biff to urinate like I had never done before. It just kept coming. The next day my clothes were much looser, and when I walked into work the next day, people could tell that I was smaller even before I took my coat off. They were shocked. I tried to explain things to a couple of people but they didn't get it. Anyway, the excessive urinating continued for a few days and in less than a week I was 3 clothes sizes smaller. And the diarrhea and pelvic pain were gone, in fact I think that my digestion was better than it had ever been, even before all of this started when I had struggled with constipation. Oceangirl, I know that you mentioned that this happened to you during your treatment so I related to your post when you spoke of it.For me, it was a relief since I knew I was retaining fluid. I imagine it also could be part of a kind of detox process while trying to clear the bacteria. But sadly, all of my symptoms started to return after two weeks.

Anyway, due to that experience, I figure that I know what to look for during my treatment attempts. I know that herbals are thought to take twice as long as prescription meds, possibly longer in my case since it has been going on for about 31 years now. Plus I have had some surgeries, probably some adhesions that might slow things down.

My abdomen is still bloating, but a bit looser and there is less downward pressure on my pelvic area. My BMs seem to vary from still on the soft side but formed to some looser stuff. I think that the Saccharomyces Boulardii has helped prevent worsening of diarrhea and think it is too soon to expect improvement in that from herbals. I am focusing more on the non-GI issues for now because during that brief reprieve, the GI issues were the last to improve. I will say that that time I was backed up for a few days where I didn't go at all due to the exploratory- abdominal surgeries will do that- shut down the GI tract for awhile.

I hope to have more to report. I did go ahead and order the other brand, Biotics Research so I will be ready to rotate when I think it's a good time. For now, the results don't sound that impressive but I feel enough subtle changes to continue. I am also taking cranberry capsules because I don't want to risk a repeat of not being able to urinate at all. The Drs had no idea why that happened. But it became very painful very fast, on top of everything else. Although it is ironic that whatever antibiotic they gave me for it probably gave me that brief reprieve. Even if I knew which med it was, it might not work again. And the fact that I had just had an exploratory laparoscopy made everything even more confusing as far as trying to figure out what gave me the temporary relief. Drs wouldn't even try. They told me my recovery was all in my head, just like they tell us our GI problems are! I had already lost 10 pounds when I went back for my follow-up appointment, but they weren't interested. This was at a University Hospital/Clinic.


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## Oceangirl

Definitely!


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## annie7

Airplane--

oh do i hate that "it's all in your head" response from the doctors...deplorable.

thanks for the update on your progress with the herbal treatment and also for all the information you've given us about it. appreciate it! good luck with everything.


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## jaumeb

Yes, airplane, let us know if your herbal treatment works.

I am also running my own experiment diet+celibacy+boulardii+glutamine.


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## Oceangirl

So sorry airplane I didn't see your last message till now. I'm not sure what they do during a laparoscopy? Could it be that the exposure to air killed off some unwanted bacteria? Some bacteria die in the air and can't be cultured. Could be why they can't find the pathogen causing symptoms if there is one. Hope the antibiotics help. I have some left over Rifaxamin but it's not enough for a proper treatment. Just for a few days.

Also were you the one that said you had H.pylori? Not sure if that was you. Wondering if you got that treated since it will make you really sick.


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## AIRPLANE

I tried L Glutamine powder a few years ago. Can't remember what side effects it had but I know that I didn't tolerate it well. Same with Zinc Carnosine.I now take a regular zinc supplement. I credit that, along with the expensive Allimed, along with zinc lozenges when I had a sore throat, with getting me through the past winter without getting my usual severe cold. I may try the L Glutamine or zinc carnosine again if this protocol works as maybe I could tolerate them then.

I noticed that you have mentioned Aglaee Jacob. She mentioned the protocol that I am currently trying. She also said that a negative breath test doesn't necessarily mean that someone does not have SIBO.


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## AIRPLANE

Oceangirl,

My post got kind of long-winded. But since I have been dealing with this for so long, that means more and more details. This is a problem when going to Drs. I have to decide what to mention, and what not to mention. Appointments are always so rushed and I have heard that Drs tune out after the first minute or so. But as a patient, you feel like the more information that you provide, the more likely you are to get appropriate help. It also doesn't help that I went to Mayo a couple of times because Drs think that they are the best. But that certainly wasn't my experience. And unfortunately every Dr you see wants all of your previous medical records so it is like there is no such thing as a new opinion. I too have read some negative comments about my mental health when I have viewed my medical records, and of course any Dr you see will also be able to view that.

I have come across guidelines for what a patient should do at appointments, and what the Dr should do. Drs should ask you things like what have you already tried for treatment, did anything make it better or worse, and maybe what do you think could be wrong. Of course that last one is an ego-buster for some Drs as they refuse to believe that you could know more than they do. But I can tell you that Drs are not following these guidelines. My appointments would often end with them telling me to take fiber and probiotics and they would run from the room before I could tell them that I had already tried that several times. So I am not eager to see any more Drs if I can avoid it, unless there is someone that sounds very familiar with SIBO and IBS in general.

You raised a very interesting point about the laparoscopy. Yes, they pump you full of air so that they can view things better. They put a viewing device through your navel. It never occurred to me that this air could have killed the bacteria temporarily. That, possibly combined with whatever antibiotic I took, could explain my miraculous but brief improvement. And maybe the urinary problem was caused by such a quick elimination of toxins. Thanks so much for mentioning this because I would have never thought of it. Of course, I wouldn't expect any typical Dr to understand this.


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## annie7

jaumeb-- had to ask, since i've been wondering about this since you posted it--- celibacy???


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## jaumeb

AIRPLANE said:


> I tried L Glutamine powder a few years ago. Can't remember what side effects it had but I know that I didn't tolerate it well. Same with Zinc Carnosine.I now take a regular zinc supplement. I credit that, along with the expensive Allimed, along with zinc lozenges when I had a sore throat, with getting me through the past winter without getting my usual severe cold. I may try the L Glutamine or zinc carnosine again if this protocol works as maybe I could tolerate them then.
> 
> I noticed that you have mentioned Aglaee Jacob. She mentioned the protocol that I am currently trying. She also said that a negative breath test doesn't necessarily mean that someone does not have SIBO.


Thanks for all the information. You mention allicin and zinc which are already in my radar. Two other things that I am considering are psyllium and lactoferrine.

I read Aglaee's book and I liked the idea. It didn't work for me as even the carrots gave me a lot of trouble. So Aglaee's protocol was not a solution for me. At least not on its own. After introducing boulardii I could introduce more foods. And now glutamine seems to be helping a bit also. But I am always symptomatic regardless of what I do.

At least, I feel there is some progress.


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## jaumeb

annie7 said:


> jaumeb-- had to ask, since i've been wondering about this since you posted it--- celibacy???


For one and half years so far ... I read about the benefits of celibacy in the summer of 2013 and I was convinced. It's fairly easy for me as I am single and no one will complain about it. Apparently, celibacy has mental, physical and spiritual benefits. It was not a solution for me, but still I feel it helps.

I recently read a post of a Chinese guy that explained that masturbating triggered his symptoms and that he felt so much better after stopping it. So there might be a connection.


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## annie7

ok--thanks...yes, i've read about that ...the mental, physical and spiritual benefits...celibacy as a tool to open the kundalini. it can be quite powerful, uplifting and energizing, people say.


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## Oceangirl

Lol annie7 I wanted to ask about that to.

Airplane
I've heard a lot of people feel relief after a colonoscopy and I know they blow air during the test and I read how we have 500-1000 different types of bacteria many of which are unknown because they die in the air, so can't be cultured. That they haven't found a pathogen that causes IBS makes me still think it's a possibility that an unknown pathogen is also the cause of IBS.

If there's any way to see a nueropathic or integrative medicine doctor they will be less likely to treat you like that and your first visit with them is usually an hour. I know it's expensive unfortunately.

Also I have read if you can follow the SIBO diet it's supposed to get rid of SIBO but it takes a year.


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## AIRPLANE

Oceangirl,

You have raised some very excellent points about the oxygen idea. I am surprised that none of the experts have mentioned this more. Yes, I usually feel better for a few days after a colonoscopy, not totally, but I always assumed that it was just due to being so cleaned out. Maybe someone should be trying to develop a type of oxygen treatment for it instead of strictly antibiotics. It doesn't sound comfortable but maybe as time went on, you wouldn't need them so much or at all. I am dying to ask an expert like Dr Siebecker or Dr Pimentel about this- can things like abdominal laparoscopies and colonoscopies that use air provide temporary relief? How far up does the air go? I am not an air-swallower (something that Drs always blame for flatulence) but would I be better off if I were?! This also makes me wonder about a product called Oxy Powder, which claims to be an oxygen-based colon cleanser. I have never used it since I am more on the D side. Although those products usually contain fibers that could feed SIBO.

I was diagnosed with an inflamed duodenum on an upper endoscopy awhile back. I was told that I did not have H Pylori. He wanted me to take Aciphex but I know that acid reducing meds make me feel much worse and of course not enough acid, or taking something to reduce it, can contribute to SIBO. Your case may be different since you seem to be doing OK.

I did find the name of a Dr not too far away who works at a regular clinic that claims he incorporates functional medicine when appropriate. I might have gone to see him if it weren't for my work schedule. I have to burn vacation days for appointments. Although I have also learned that you can't rely on the information given on Drs' websites. It may sound like the perfect Dr for you but their advertising (respect the patient, do what they can to help, let you participate in treatment decisions) turns out to be total hype. You still are stuck with paying them! It must be nice to have a job where you get paid, whether you do your job or not. No accountability, and then writing reports that make them look good to the insurance companies, saying that they did things or told you things that they never did.


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## annie7

Oceangirl said:


> Lol annie7 I wanted to ask about that too.


yes, had to ask....inquiring minds and all that











Oceangirl said:


> Also I have read if you can follow the SIBO diet it's supposed to get rid of SIBO but it takes a year.


i'm going to really try hard on the diet thing. i've been eating low carb for quite a while now--the cedars-sinai low fermentation diet but i guess i should really go full out SCD at least as much as possible after treatment. which will be hard for me since i have mitochondrial disease which means my cells don't make enough energy and i need to get my energy from food. and carbs help with that. the advice for people with mito is to eat carbs--not overly much but enough to keep you going so you don't feel weak.

i don't eat pasta, rice or bread but i do eat sweet potatoes--not a lot--maybe 1/4 cup a day. and a small bowl of instant oatmeal. so it looks like i should cut those out for strict SCD.

Airplane--yes i've read that about people with SIBO feeling better after a colonoscopy and the article said it was due to all the prep you have to drink sort of cleansing out the small intestine. the instructions for the HBT tell you not to schedule it within four weeks of taking a colonoscopy prep or any other kind of bowel prep--i imagine for the same reason.


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## Oceangirl

Airplane

That's a very interesting idea about an oxygen treatment. I believe after the stomach area and down a bit there is very low oxygen. The problem with doing anything with the small intestine is it can't be reached. There is 17? feet either way which we cannot look at except for doing open surgery. I imagine the colonoscopy and other examinations do blow air in that gets into those other areas. That may be what is helping to reduce some symptoms. Who knows if it is a bacteria what other areas it's residing in to like the large intestine. If that is indeed the cause. Instruments used for collection can also damage bacteria which is why they say culturing for SIBO in IBS patients had low results while the breath testing was much higher. It's interesting similar areas have problems. I have bladder issues as well from interstisal cycitus. Another one they can't explain as to why the lining inside the bladder gets damaged or why your immune system stops making the GAG layer but they do know there is a correlation between a lot of bacteria infections and antibiotic treatments.

I would try out that Bentaine HCL if you have to low of stomach acid. It may make a difference. I got IBS/SIBO after a horrible case of food poisoning or some kind of stomach virus. I was sick for a month straight. Diarrhea every single day. It was hell. It went away after a month and then two months later everything started up again and I was never the same. So I think that's why having low acid wasn't the issue with me. I was so stressed out from being in pain I actually was making to much stomach acid.

Yeah I totally see that about doctors. It's an endless quest. My doctor I like now is my 3rd doctor. The second one they sent me to they went on how great he was and he wasn't. Actually how I based my decision on my new doctor I have now was based on how long ago he got his medical degree. I picked someone who had graduated in the 90s which was the most recent graduation of all the doctors. I figured they'd be more open minded about newer illnesses and not be so stuck in the belief IBS is all stress like doctors had been told for so long. So I'm very happy it all worked out for me. He was more open minded. I talked to my nueropathic doctor on the phone before I also saw him. I called a lot of places and picked the person who sounded the nicest on the phone.

Annie7

The diet is supposed to help provide immediate relief within a few days as well. It's very hard to stay on. I noticed with the small amount of fruit I could tolerate melon well. Not sure if it has less sugar. When I was on it I would make omelets with peppers, tomatoes, garlic, no cheese. (I cooked the veggies together for a bit before putting them in the omelet) One piece of white bread. I ate a lot of salmon and chicken. I had some small amounts of sweet potatoes, cooked carrots. I made homemade soups, sandwiches. Drank water and tea mostly. I was going off of the basics in the Pimentel diet. It would be good to do with some elemental shakes. I'll let you know if I ever get my sample lol or find another good elemental drink.


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## AIRPLANE

Yes- that would be great if we could interview a Dr by phone or web without having to waste time and money for nothing. I tried asking about Drs a few times when I was considering making an appointment. But I was always told 'I'm sorry, but you will have to come in'. Of course, Drs and clinics make a lot of money on these useless visits and they don't want to lose out on that. I'm surprised that the insurance companies aren't more help in this regard, as I would think it would save them money in the long run. I know that Dr Siebecker and a colleague do appointments by phone or Skype (I don't have or want Skype) but they can't prescribe any meds without seeing you in person at least once in Portland, OR which is nowhere near me.

Yes, the diet.Very difficult. I do eat a few gluten-free things, like granola and usually one piece of bread with almond butter. Salads or lettuce wraps. I do sometimes eat Chinese which has brown rice. I gave up meat and poultry about 40 years ago, I do eat seafood, preferably wild caught which is sometimes hard to find. I never did like meat and at that time many people were doing it. I also had constipation at the time and I felt that not eating meat would help with that. Of course, back then they pushed less fat, and to fill up on healthy whole grains which we now know isn't that great of an advice. Obesity, blood sugar and cholesterol problems are as prevalent as ever. I didn't know that carbs could raise your triglycerides.

I do seem to think that the brown rice helps. If I eat only protein and the few vegetables that I tolerate, my diarrhea becomes constipation or 'constipated diarrhea'. But I know rice is high in arsenic and not good for SIBO.


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## annie7

Oceangirl---thanks for your feedback on diet and yes, thanks for letting me know if you ever get your sample.

wish the elemental drinks weren't so expensive. i was looking at vivonex today and that seemed even pricier. absorb plus looks like a better drink anyway. just too bad they are out of the unsweetened vanilla.


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## AIRPLANE

I just wanted to mention one more thing about the oxygen (I can't stop thinking about it). I think that the air during something like an exploratory laparoscopy only goes into the abdomen, not any part of the GI tract. However, if someone has intestinal permeability, which is not uncommon for SIBO patients, theoretically, some of the air could make its way through the intestinal lining.


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## Oceangirl

For some reason I was getting bad indigestion from granola. I also now try to really chew my food a lot so it's easier to break down. Those blowers are strong so it's conceivable some may have made its way into a problem area. I was on the paleo diet for a while but it made me extremely lethargic and I just couldn't do it anymore. They say the first thing to do is stop eating all grains and see if it helps since you may have celiac disease and it may not come up positive on a test. Also to stop drinking milk. Neither of those fixed my problem however. Not eating to much sugar and sweets, basically a low sugar, low fructose and no fake sugar at all diet seemed to help to reduce my symptoms the most regardless of the food being easily digestible or not. That included breads and pasta and carbs that turn into sugar in your body except for simple white bread that breaks down easy. No milk or milk products at all. It sucked but even in a few days I noticed an improvement. I'm being terrible and not following that diet at all since I'm not sick but then It makes me worry my SIBO will come back but it's just so nice to eat things I never thought I'd be able to eat again.

After the antibiotics I would get these sugar cravings. Almost like the bad bacteria is like feed me. I read an article that they were doing research that showed the bacteria in our GI tract can actually influence our eating habits.


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## Oceangirl

Oh I wanted to add they can check for certain bacteria that dies with oxygen with a syringe but they can't really do that with the small intestine or when they open you up during surgeries etc,


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## MaximilianKohler

I've read and experienced the opposite in regards to celibacy.

I feel like not masturbating has negative affects on me. And I've read that sex is very healthy. Each to their own though.


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## AIRPLANE

I am now beginning week 3 on the herbals. Did 2 weeks of the Candibactin AR and BR, usually 2 of each twice daily, occasionally three times. I also was taking an Allimed once a day, which I might have taken more of but was running low on it and was debating about purchasing more since it is so expensive. Also, since I am more on the D side, not sure if I really need anything specific for methane, although I have read that if you have hydrogen sulfide, which they can't yet test for, that the recommended treatment for that is the same as for methane. So I just wanted to cover all of the bases and did end up forking out the $$$ for two more, 100 count bottles of Allimed (ouch!)

After the first few days on the Candibactin, I decided to stop taking the Saccharomyces Boulardii since I didn't seem to be having D or really loose stuff. I felt OK, still had a bit of gas, some bouts of nausea. Initially, I felt a decrease in bloating but it hasn't decreased any further and my abdomen still feels pretty tight.

I ordered and received the two Biotics Research products last week. Originally I had planned to rotate the two brands, but after reading about another patient who used both brands at the same time, I decided that I would now try that route next. I am not going to take the maximum dose of both, but a half dose of each together. And two Allimed, twice daily. I started this yesterday.

This morning I was more on the constipated side. Very formed but dry, a bit on the stinky side. I ended up using a glycerin suppository and had a second, similar movement. I have read of some people getting constipated with the Biotics Research products, so wonder if I would ever want to take it at the full dosage if a half dose can cause constipation after only one day.Depending on how I feel tomorrow, I might go back to the Candibactin only. I am also debating about taking the Saccharomyces Boulardii again, because I know it could make constipation worse, but I do worry about causing dysbiosis in the large intestine while taking all of these supplements. I read that Chris Kresser recommends taking Saccharomyces Boulardii both during and after these types of treatment. When I do take it, I take it at a different time than the herbals as I know that they can cancel the Saccharomyces Boulardii out, especially Oregano Oil.

http://chriskresser.com/sibo-and-methane-what's-the-connection

http://radicatamedicine.com/2015/02/25/beating-sibo-naturally-with-herbal-antimicrobials


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## jaumeb

Is it working AIRPLANE? From your message it seems that you are doing well ...


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## AIRPLANE

I would say that I am doing OK, for the most part. Still have a long way to go. I definitely think that this is worth trying, but may require some tweaking as you go along. I figure that it is the next best thing to Rifaximin since I can't find a SIBO/IBS Dr in my area to work with me. I was taking various herbal antibiotics before starting this protocol, but it was too much of a guessing game as to which ones to use and for how long, and what brands were the best. I still have some Neem on hand so might add that. From what I have read, Neem is potent and should only be used intermittently.

I also know that it could take quite awhile, especially since I have had this for almost 31 years now, and had pretty bad constipation issues before then when the D started. Plus having had a few invasive abdominal/pelvic surgeries while this has been going on probably didn't help. If I am on the right track, I am sure there is a lot of repairing and detoxifying to go through. Right now, I just have to work on treating the D symptoms without causing C, which is a challenge.

But I definitely will continue with it. I am sure that it will take me longer than the one month that the clinical trial used it for.


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## Oceangirl

I hope you see some improvement. I don't know much about herbal antibiotics aside from hearing about wild oregano, honey and garlic. It's up to you to take the SB probiotic. From what I've read it's main purpose is to prevent bad bacteria from growing. There is a website I found once that you can put in different herbs and it can tell if you can have any interactions. I found it a while ago so not sure the name.


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## jaumeb

Thanks AIRPLANE for the details. So far it seems promising ...


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## annie7

yes, i hope you see improvement, too, Airplane. thanks so much for all your information.


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## Oceangirl

Hi airplane, please let us know how you're doing.

I've still been doing really good with my IBS/SIBO. My bladder problems are acting up but that's another story. Taking the SB everyday but think the 2 rounds of antibiotics helped a lot. I can eat or drink anything now.


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## AIRPLANE

Hi Oceangirl,

I have switched over to the Biotics Research products, probably for the last 10 days. I know that when I first tried switching over to it from the Candibactin AR and BR, I felt that it was too constipating. However, I tried it again. The first 2 days I did have very hard, painful BMs but that effect seemed to lessen and I now have OK BMs, not too constipating and no more loose ones. I also have been able to stop taking the pain med Tramadol, which I had been taking for a few years for cramps, diarrhea and a couple of sore, painful areas (fibromyalgia?). I really like it if I can get by without it, partly because pain meds can slow down the migrating motor complex, which can make treating SIBO more difficult, and also because it is a pain to have to keep going to the Dr for refills. Last year they made new rules that makes getting pain meds more difficult, even for non narcotic ones like Tramadol. But it was the best thing for dealing with diarrhea and pain. It definitely didn't cause that blocked feeling like Imodium, which always ended up causing break-through diarrhea, as you mentioned.

I did start taking the Jarrow Saccharomyces Boulardii again. I just wanted to compare how these herbals worked, both with and without it. The bottle I bought is almost gone, and I decided to try the Biotics Research brand of Saccharomyces Boulardii next. It doesn't have MOS, which I am uncertain about, nor does it have dairy, like Florastor which did not agree with me at all. I may buy more of the Jarrow Brand in the future, as I don't think that it causes me any problems, but want to see how this other brand does.

After a couple of weeks, the Candibactin didn't seem as effective as it had been. But I will try rotating back to it at some point as I still have quite a bit of it left. Right now, I'm thinking that maybe the Biotics Research products might be better than the Candibactin for us diarrhea types, but it might not be good for those who are constipation predominant. The Johns Hopkins study of these products didn't mention anything about what symptoms the patients had, and didn't compare the two brands as far as effectiveness.

I also am taking the expensive Allimed, 2 capsules twice a day but am going to drop down to 1 capsule twice a day because of the price. I also take a couple of cranberry capsules a few times a day to hopefully avoid bladder problems, and supposedly it works by making it difficult for bacteria to adhere to the bladder, so maybe it could help the small intestine as well. It is also not very expensive. Since the Biotics Research doesn't have Berberine, I am going to take some of that as well since I have some leftover from using it previously.

So I would say that I definitely feel that I am benefiting from this. It is mostly a question of continuing and sustainable improvement. Many alternative practitioners do recommend rotating various herbals and antibiotics because the bacteria can learn to adjust to them.

So glad that you have had continued success!


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## jaumeb

Thanks AIRPLANE for the update. I am doing my own experiments while keeping an eye on your results to decide what I am going to try next.


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## Oceangirl

That's great airplane. So glad you've had some improvement.

I also have tramadol but I take ativan as needed if I get an anxiety attack and even though I rarely take it these days I can't take the two together so it makes me nervous.

I have interstisal cycitus. Might not be spelling that right. Have a lot of pelvic and bladder pain lately. Basically you feel like you have a bladder infection but you don't. For some reason your body stops making the protective coating inside the bladder so it gets tears and hurts super bad which radiates pain downward. It's been up and down but has been bothering me for a couple of weeks. I really think my IBS was even worse though because I could not even function as sick as I was. I can still be miserable with my bladder and go out of the house. It can get worse but is more moderate now. The IBS I had so many BMs I was worried I was going to die from dehydration oh and the pain was even worse. It never went away. So it sucks my bladder is acting up bad but thank God the IBS is gone. The two together was making it hard to even go to work anymore and have spent almost the last year in bed except when I was at work.


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## AIRPLANE

I have heard about how a lot of IBS patients also have interstitial cystitis. Glad I don't have that as it doesn't sound good. It's interesting about how IBS patients seem to develop so many additional issues and I don't think that it is just a coincidence, or due to stress as you keep hearing about from so-called experts. I know that when my diarrhea and severe pelvic pain started, my acne became worse than it had ever been- the severe, stubborn cystic type which I finally had to treat with a 6-month course of Accutane at age 28. Who knows, if the stubborn Dr I had originally asked for Accutane a few years earlier had complied when the acne was less severe, I could have avoided this. It leaves behind enlarged pores and permanent scarring, plus it was very painful, in addition to the digestive pain and discomfort. Plus I don't think that the repeated courses of Tetracycline did any good- either for the acne or my gut. When I tried to tell Drs that my severe acne and digestive problems were somehow connected, they refused to believe that it could be a possibility.

So I do believe that this is a systemic issue and that if you can find and treat the root problem, many of the supposedly unrelated other symptoms often will improve or go away. Another patient who sees a colleague of Dr Pimentel's at Cedars Sinai had some good news to share the other day. Dr Pimentel has been working on a blood test for IBS/SIBO patients that can identify something called anti-vinculin antibodies, which I guess means that we might have an autoimmune condition as a result of the small intestinal bacterial overgrowth, if I understood it correctly. There will be a conference in Washington DC in May where this test is expected to be announced. Of course, it is hard to say whether this means that the stubborn medical community will be willing to make this test widely available, since after all this time it is still very difficult to find a gastroenterologist who will even talk about SIBO, nevermind offer a breath test. But still, what could be easier than a simple blood test? We routinely have them done anyway to check for things like blood sugar levels.

Really, there should be no excuse for not allowing anyone who has been diagnosed with IBS from getting this test. We shall see.

I am hoping that this new test will result in more of us getting proper treatments, along with some long overdue validation for our condition. While stress doesn't help any condition, it should not be considered the main cause just because they can't find the true cause of any health issue.

She also mentioned that Dr Pimentel and his colleagues were working on new treatments for SIBO. I still like the oxygen idea that we discussed here earlier, since we know that these bacteria apparently can't survive in the presence of oxygen. I wonder about timed-release oxygen-filled capsules that wouldn't open until they reached particular points in the small intestine, or something like that. I would much rather kill bacteria with oxygen than repeatedly taking antibiotics! So it is just a question of how to get the oxygen where we need it.


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## jaumeb

I believe that the acne can be connected to digestive problems. I read about people successfully treating acne with probiotics. When I was reading reviews of probiotics I realized that some customers were using them for skin problems.


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## Oceangirl

Hi airplane,

I completely agree something is amiss since so many conditions are closely related. I had IBS, the interstisal cycitus and I also have the most hellish period cramps on earth. How is all this weird stuff going on at the same time. I had the bladder problems before I got IBS. I suspect I could have fibermialga to. I also have some sexual disfunction as well. I don't want to get to graphic but it's maybe the opposite of what you'd think it would be. It seems related in some way all these things that the muscles are involved to some degree. Bowel muscles not working right, muscles involved in cramping being overactive, muscles in the bladder so I have to pee so much. It seems weird all these things going on. Even my anxiety it's a loss of control in that my brain floods itself with adrenaline and cortisol. The antidepressants aren't the whole story though since it only helps somewhat. I remember I was normal until I was 18 and got the depro vera shot and it was the first time I ever had panic attack feelings in my life. There could also be some bacteria that could invade the body or over use of antibiotics or an inflammatory condition. I've been taking magnesium and calcium since it helps with muscles but it makes me so tired. It sucks far in the future they will probably figure it out but does us no good now.

I read about the blood test. Pimentel does such amazing work. The rest of the medical community needs to get on board.

I'm still wondering when the Rifaxamin results are going to be posted. I wish I could give you my pills but they aren't a long enough dose to do much. Also the neomycin can cause hearing loss so it's heavy duty. It's so unfair you can't try a treatment that might help you.


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## AIRPLANE

I figured that I would update on my herbal antibiotic regimen. I started out with the Candibactin product for about 3 weeks, then switched to the Biotics Research products for a couple of weeks, then back to the Candibactin ones for the last week. Each product seemed to help with the diarrhea/loose stools. I had good- but not total relief of the tight, bloated feeling when I first took the Candibactin, but not this last time. Both products are constipating, especially the Biotics Research ones. So it might be worth trying if someone has severe diarrhea, but it is a bit too constipating for me.

I am trying to decide if I should stop taking them. I have read that some experts recommend taking a week or so off as a part of the rotation. I am also considering trying a probiotic, which have never worked for me in the past. I have heard about Bacillus Clausii being helpful for some people but I could only find it in a product called RestorFlora which also contains Saccharomyces Boulardii, which is OK, and Bacillus subtilis HU58, which I don't know anything about. I bought it a month or so ago but haven't tried it yet. I once tried one called Bacillus Coagulans and only lasted a couple of days on it because it gave me worsening symptoms.

I am also trying to figure out a new diet, beyond gluten-free (I stopped eating meat and poultry in my teens). I recently listened to some online talks from experts about the safety of our food supply. It was very informative. Speakers included Jeffrey Smith on the dangers of GMOs and Roundup herbicide, Robyn O'Brien who is a former food market analyst and is now considered the Erin Brockovich of our food supply after one of her kids developed multiple food sensitivities, and Vani Hari, also known as the Food Babe. I just read part of her book where she has ideas for diet. After listening to these sessions, it sounds like some of the problems we have with certain foods maybe isn't due to the food itself but more about how it was produced and all of the pesticides and herbicides. Vani Hari mentioned this in regards to gluten sensitivity, and said that some of us might be able to tolerate Ezekiel's sprouted bread, which I have seen in health food stores.I may try it because I have heard a lot of bad things about the gluten-free products.

Annie, has the antibiotic treatment helped at all? Still hoping for the Rifaximin approval to come through, even though it might not be the answer. Also, May 17th is coming up soon when Dr Pimentel is expected to announce the new anti-vinculin antibody blood test at the Digestive Disease Weekly conference in Washington DC. Haven't heard about any subsequent treatment if someone tests positive for it. I would guess that your Dr in Michigan would be on top of this news when/if it comes out.


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## jaumeb

Thanks for the update. It seems that those herbal antibiotics have some kind of effect. I never suffered from constipation, so they might be an option for me.

Since you talk about food, have you read "healing with real food" by Aglaee Jacob?


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## annie7

Hi Airplane

thanks for your update. yes, it does sound like the herbal antibiotics have had some kind of effect. definitely not an option for me, since i have C. thank so much for sharing your research and information with us.

yes, i've been looking forward to Dr Pimentel's announcement about the blood test. it sounds so much easier and more reliable than the breath test. and yes, my U of M gastro doc wil be at DDW--often he is a speaker there.

i also have been hoping that we'll see an FDA approval on rifaximin for IBS D this month. maybe they will discuss this at DDW.

as for me--yes, i do think the course of augmentin i did helped at least a little although it also--much to my surprise--had a side effect of temporarily worsening my C. everything i've read on it says it can have D --even severe D--as a side effect. i did feel better for a while but now i seem to be having more gas, bloating and nausea but i think a lot of this, like my gastros have said, could be due to the laxatives i'm on, or maybe SIBO came back, since i no longer have an ileocecal valve due to my surgery two years ago.

i've considered calling my gastro's office back and asking either to be retested for SIBO and/or put on a (hopefully different) antibiotic if i test positive but i've been wanting to hold off on that a bit to first see if rifaximin gets it's FDA approval--although i'm not sure that would help me, since i don't have an IBS-D dx. also i will be having major surgery next month and at the time will be put on a boatload of antibiotics--one of which will be flagyl-- in the hospital so that's another reason why i'm waiting.


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## AIRPLANE

Annie,

I can see why you would want to wait before trying any more antibiotics, especially with surgery coming up. I was once able to try a course of Flagyl and Ciprofloxacin a few years ago thanks to a sympathetic Dr who was on-call one weekend. I didn't even have to see him in person, yet I got more help from him than I have ever received at any of my multiple appointments. I took them for two weeks and they did take the edge off of my symptoms which were really flaring due to a forced change in my job. I do remember having a metal taste in my mouth due to one of them, and also feeling dehydrated, somewhat like the herbals are doing to me now. So I am thinking that maybe taking a break might be a good idea as I can resume taking them anytime I want to. I think that you said that you couldn't take Ciprofloxacin due to damaging side effects. If you seem to be able to tolerate the Flagyl, and the Rifaximin is approved, I wonder if a course of those two together would be good for C? I actually don't have a lot of faith in the breath test and hopefully your Dr could code things so that you could get insurance coverage, especially with your long history and all of the other things that you have tried that didn't work.

I can imagine the uncomfortable side-effects of the laxatives but I know that they are a necessary evil for some patients. I have tried different forms of magnesium (never oxide, of course) but have given up on them. I know that magnesium is good for body aches but I am just too sensitive to any foods or supplements with even the slightest laxative effect. That is why trying to find healthy, whole foods that I can eat is so difficult. All of the cruciferous vegetables bother me and digestive enzymes actually seem to make things worse.

Also, if we actually have had SIBO for all this time, I am thinking that it maybe isn't possible to ever actually 'cure' it for good. I have read that Dr Siebecker has said this about herself. She has a long history of constipation. Even if you are able to eradicate the bacteria, which itself could be difficult since they have likely had a lot of practice with resisting antibiotics over time, and also because it may have permanently affected small bowel motility and enzyme production. I would think that people who can get it treated much sooner than we were able to would have a better chance of getting long-term relief after one or two courses of treatment. And based on my sensitivity to anything that speeds things up, I don't think that I would be able to tolerate a prokinetic. Dr Siebecker said that even for those with D, a prokinetic shouldn't make D worse because it should only work on the small intestine, not the large one. But that is only in theory. I once tried Iberogast and it was as bad, or worse than taking magnesium.

Good luck with your surgery. Hope it doesn't have any bad impact on your C although depending on the type of surgery, it can shut down the GI tract for a few days, as I'm sure you are familiar with.


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## annie7

Airplane--thanks so much for your good wishes for my surgery--i do appreciate it.

so glad you had a good doc who had you try cipro and flagyl and that it at least took the edge off for a while. i do wish that on-call doc could have turned out to be a permanent doc for you. you've had way too many bad ones--even at mayo. when i think of all you've been through these uncaring and uninformed, doctors....what a crime.

and no, i don't have much faith in the breath test, either. sounds like the blood test is so much better.

i've had flagyl before and while it gave me a yeast infection, like most of them do, it wasn't too bad otherwise. yes, you're right--can't take cipro. thanks for the idea about rifaximin and flagyl. i'll keep it in mind.

i agree with you and Dr Siebecker about the difficulties of really "curing" long-term SIBO.

so sorry you have so many sensitivities to things. that really makes it hard to manage problems, doesn't it. constant trial-and-error, with so many things just not working well. been down that road myself way too many times.

thanks for all the terrific information you've shared with us here on the board.


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## Oceangirl

I just got a older reply on a topic at health tap about herbal antibiotics. This isn't copy/pasting on my phone for some reason: http://tinypic.com/r/16jqfo/8

Have you improved at all Airplane? How much?


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## AIRPLANE

Hi Oceangirl,

I tolerated the herbals for the most part for the first few weeks. The best time was during the very first week when I was on the Candibactin. As I mentioned previously, my abdomen didn't feel so tight like it usually does. I actually had a couple of days with the type of BMs that we all hope for. There were a couple of days where I was able to go as soon as I got out of bed. No loose, broken BMS, and no straining trying to get everything out.

But as time has gone on, I am becoming more and more constipated with the dry hard stuff. Maybe a bit like what Imodium can do to some of us. Even though I feel like I am still retaining fluid everywhere, my gut feels dehydrated. And I know that prescription antibiotics that I have taken for other issues in the past can cause this same feeling (as well as constipation) while taking them so guess I shouldn't be surprised. I had planned on continuing with the herbals for at least two months since I have had this for over 30 years, but I definitely don't want to be constipated every day either. Today was a very long day at work and I couldn't wait to get home and use a glycerin suppository. I have used suppositories in the past for incomplete evacuation even with D.

Today I didn't take any of the Candibactin or Biotics Research products. I did take a berberine capsule and one Allimed. I take the Allimed and some zinc as much for immunity as for my gut. There is some kind of virus going around which is unusual for this time of year. My co-worker has a terrible cough and chest congestion and my neighbor was sick with a stomach bug that he caught from his co-workers so there must be something going on. I sure don't want it, as you know, we already have enough to deal with!

I will continue with the Saccharomyces Boulardii- currently I am using the Biotics Research brand that has no MOS or dairy. I think that Saccharomyces Boulardii is sometimes used for treating diarrhea, and maybe it was too much along with the herbals. But I know that Chris Kresser and others have recommended taking Saccharomyces Boulardii both during and after herbal or prescription treatments for SIBO.

So for now, I would say that these herbals have definitely stopped the loose stools and sometimes D, but they slowly turned things into uncomfortable C. I will see how it goes and if the D comes back, I will take them again. Yes, I read about the Johns Hopkins study that was done with these herbals last year. I wish that they had mentioned more about the patients in the study. Did they have mostly diarrhea, or constipation, or alternating? I think that the patients in the study took the products for one month. Maybe I should have taken a break from them at that time. But I do want to find out how I will feel being off of them for awhile, knowing that I can resume them at anytime.

How are you feeling? Are you still waiting for the Absorb Plus elemental diet product to become available?


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## Oceangirl

Hi airplane,

It was funny I remember when I first got food poisoning that led to my SIBO I was sick for 2 months straight with terrible diarrhea and I got some kind of cold and had a high fever and that actually helped me. I stopped having D for 2 months. I think the fever killed off some of the bacteria.

I have still been doing good. Every once in a while I will go maybe 3 times early in the day but I just drink some pepto bismo. It's very mild compared to my previous suffering. Can have a bit of an upset stomach when it's going on but the pepto helps it go away. Most days I am fine.

Taking tons of bladder supplements so it's been improving some. Still a little up and down with that.

I read another story about someone who said they cured their sibo and they also took the Neomycin and Rifaximin combo. I actually only took the Neomycin for 4 days 2x a day. It's pretty powerful stuff. Felt like I drank battery acid. The two are supposed to work synergistically together. Neomycin can cause permanent hearing loss though. I was really worried about it but nothing happened. I think the only way to try it is to see a nueropathic or integrative medicine doctor. They can look at a lot of options when regular doctors give up. It's time and money but being sick destroys your life.

I still have sugar cravings though. I can eat anything pretty much though acidic things irritate my bladder.

I wonder if there are certain types of antibiotics that can cause problems by destroying things your body needs. Like my bladder problems, there is a relationship between that and a lot of bladder infections but it could be the antibiotics you take to treat bladder infections they don't know. Maybe certain kinds can cause problems in some people as an undocumented side effect. I have had so many problems in my whole lower system.


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## Oceangirl

I'm just taking those vitamins I mentioned before. I just gave up on absorb plus. I should email them and ask for a refund.

Also I was reading about Pepto Bismo and it is a metal that prevents bacteria that cause diarrhea from growing. It's not strong enough to cure SIBO but I think it seems to be useful for me more so than Ammodium.

Also this whole time I have still been taking my Cystoprotek but it's hard to say if it helped my SIBO since I took so many things but it's supposed to help with mast cell inflammation. It may have made a difference. I'm so grateful I feel better when I felt so depressed I didn't know how I could keep on living as sick as I was. I still worry sometimes about it coming back. It's been several months. Still take the SB everyday to but I wonder when I won't be worried about getting sick again.


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## AIRPLANE

Oceangirl,

So glad to hear that you are still doing well. I definitely understand about being concerned that it could come back. I remember how disappointed I was after my mysterious, complete reprieve from it that I had 25 years ago after my exploratory laparoscopy, and then two weeks later it all came back.There was no talk about SIBO back then of course and no Dr then, or now, wanted/wants to listen to my long, complicated history with this and try to figure anything out. I used to think that maybe when I got older, if I was still having issues, that Drs would treat me with more respect but that hasn't been the case. But then our medical system- heck, our whole country is a mess right now with large corporations controlling everything- what the media reports, our politicians are owned by them due to contributions to campaigns and foundations, Drs own stock in medical supply and drug companies (there was an article about this in our local newspaper recently). It is not a good time for consumers and patients. And I take most of what the FDA reports with a grain of salt. I have also been reading not so good things about a lot of vaccines- like the past couple of years, they knew that the flu shots were not very effective, but they pushed them anyway because it would have been a huge financial loss if the vaccines weren't sold. And there is some question as to whether some of the ingredients in many vaccines are safe. I actually think that the herbals that I have been taking for the GI issues are what prevented me from getting my usual, severe cold or flu.

I don't know if we have discussed the illeocecal valve in this thread. I know that SIBO can be caused by a malfunctioning of this valve due to not opening and/or closing properly. I have wondered about this since whatever I injured that started the diarrhea and bloating was in the lower right quadrant where the valve is located. If I had known about it back when I was going to physical therapists and chiropractors I would have asked but surprised they never mentioned it. Over on the SIBO Facebook page there is a nutritionist, Angela Pifer who mentioned on her website, in response to a patient question, that if someone is bloated, then the illeocecal valve would be stuck open which of course would allow the backflow of bacteria that can cause SIBO. I have never heard that before, but I am always bloated. I don't think that a regular allopathic Dr knows much about or pays any attention to this valve.

I am back to taking low dosages of individual herbals. Yesterday, even after being off of the Candibactin and Biotics Research products,I was still pretty constipated and had a very painful BM. Today it was a bit more like it normally is- back to the loose, not well digested side. Of course, I have never had the stool testing for things like fat malabsorption. The blood testing that regular Drs do apparently show that I am not deficient but I am always tired, and was more so last week.

Well, today is the day that Dr Pimentel is expected to speak at the conference in Washington DC. Hoping it gets good media coverage. I know that the blood test won't help everyone, but hopefully it will get a few more Drs to consider that IBS/SIBO isn't in our heads or easily fixed by fiber, diet, probiotics, and antidepressants like they have been insisting since the 1980's. Been there, done that like so many people.


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## AIRPLANE

Speaking of the illeocecal valve, I did find some info on PubMed where they used some type of device to check the pressure of the illeocecal valve in SIBO patients- think it was at Johns Hopkins. The link to it didn't work here. Sounds like something that they should be checking for.

Also found something about generic Rifaximin. Apparently some of it may be absorbed more than it normally is supposed to be which could mean more side effects. I have also read about a couple of drug manufacturing companies in India who have been fined for watered down, low quality drugs. It didn't mention Xifaxan or many drugs specifically. Still hoping that this drug gets approved for SIBO/IBS soon.

http://www.ncbi.nlm.nih.gov/pubmed/24836868

http://patients.about.com/b/2013/05/22/do-you-take-a-generic-drug-fake-or-adulterated.htm?utm_source=exp_nl&utm_medium=email&utm_term=list_patients&utm_campaign=list_patients&utm_content=20150503


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## Oceangirl

Thanks for all the info airplane. Did your symptoms start due to an injury near that area? That makes a lot of sense. I wish someone would look into it. If it exists as a problem they know can happen is their anything they can do to fix it?

I only had the flu shot once and I got the worst cold in my life within the next day. They say it can't happen but I don't want another one. I think some vaccines are necessary to prevent the much worse spread of diseases that can kill a lot of people. They certainly aren't all safe for everyone and I know someone that became permanently disabled after they got a vaccine and have a lot of health problems.

I am glad to hear that about the Rifaximin. When I take antibiotics my bladder acts up. I think it has been damaged from previous antibiotic use but my doctor said it's supposed to be 99 percent only in the GI tract so I thought it had to be some weird coincidence. Feeling like you have a bladder infection constantly when you don't is still less painful than SIBO. I've been a little better lately with it. Have been taking a ton of supplements and drinking aloe Vera every day.

I wish I could get my anxiety under control. When I'm having a not so good day it's an intolerable, overwhelming feeling. It's hard to deal with and then I get so scared I'm getting sick or I won't get better and start predicting the worst outcome. Luckily my anxiety doesn't make me sick just makes the experience of being sick worse. I've been so worried about it sometimes and so anxious it would have came back for sure by now if that's all it was.

Is their no options for you with your insurance to maybe see someone else and just demand they do certain tests?

Having SIBO makes you utterly exhausted. Vitamins really can help some.


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## AIRPLANE

Oh yes, Oceangirl, I agree about the exhaustion, fatigue. I do take a multivitamin, Twinlab without iron. I like that it is a powder in a capsule. I never liked the hard, waxy vitamins. I always wondered if my system was able to break them down properly, and I didn't like the way that I could smell it in my urine. That's also why I gave up on apple cider vinegar. I tried it first in capsules, which I guess isn't the best way to take it anyway. I then bought a bottle of Bragg's Apple Cider vinegar at the health food store, tried taking it in a glass of water, but quickly gave up on it because I hated that my urine smelled just like it. Some people with SIBO swear by it, but others say that it is useless or makes their digestive problems worse.

I have wondered if I could be iron deficient. I gave up eating meat in my teens. And then I had such heavy periods until I had my uterus removed. But I am still usually tired. I always assumed that they checked for iron levels when they do blood tests, and I know that a few times in the past that my nutrient levels were checked but they said that I was fine. My 86-year-old mother recently complained about fatigue to her Dr, got some test, and turns out that she is very iron deficient for no obvious reason. So who knows. I have tried taking iron supplements but they always disagreed with me, causing a degree of constipation that was worse than diarrhea so never took them for long. Even when I was literally bleeding non-stop before my hysterectomy. Many iron supplements claim to be non-constipating but they don't seem to live up to their promises. I did buy my mother some liquid Floradix iron supplement to try. It is supposed to be taken 1/2 hour before meals which is a nuisance. Will see if it helps her.

I recently joined the SIBO group on Facebook and like reading about what others are doing. I had been on a group called SIBO Nation but very few people post there. There is also another SIBO group on Facebook that I think maybe was the first Facebook group for it but it appears to have faded out and the other group is the more active one.

Yes, I wish that I could demand to have specific things like the illeocecal valve looked into but it just doesn't work that way. They usually scoff at my ideas and/or change the subject and only want to deal with other, non GI issues. Yes, that mysterious injury is when I developed severe pelvic pain,spasms and diarrhea. It felt like my insides were being scraped with a knife, excruciatingly tender.I ran from Dr to Dr, was thrown back and forth between gastroenterologists and gynecologists, but not one of them took my complaints seriously. It was 7 years before I even got to have that exploratory laparoscopy that I previously mentioned, which came up empty. Prior to that I had struggled with constipation since around adolescence. Interestingly, I had had a couple bouts of gastroenteritis not long before that, which I had forgotten about. I will keep informed about that new blood test. But since my symptoms have pretty much included all 3 types over the years- constipation, diarrhea and mixed, I would have more confidence in it if it covered all 3, which they are working on but the current one is just for diarrhea. It does seem amazing that the functioning of this valve is not something that gastroenterologists consider evaluating. Except for Drs like Dr Pimentel and his colleagues at Cedars Sinai, Dr Mullin at Johns Hopkins, it seems like most gastroenterologists are in an old outdated rut and not motivated to help those of us who have been labeled with so-called IBS, even though it is occurring in epidemic proportions. They don't bother to put the latest information into practice. I am sure that many gastroenterologists will be resistant to the new blood test, just as they are about the breath test. Only difference is that the blood test doesn't require any special equipment which should make it harder for them to refuse, but I am sure many will still be stubborn about it. And as I mentioned a couple of posts back, I think that I know some of the reasons for this. Our current medical system is money-driven by corporations and financial interests/investments more than it is by a desire to deliver the kind of care that we have the right to expect from them. And I think that they know this. Otherwise, they would be offering us surveys so that we can relay to them how satisfied or dissatisfied we are with their Drs and clinics, much like the online surveys that stores like Walgreens offer. But they likely already know that they would get a lot of negative feedback and would have no intention of taking any action on it. Over on the Inspire group forum, I am constantly reading of other patients who went to Mayo Clinic like I did and had the same worthless (but expensive) experience that I had. A total joke.

You mentioned that you get bad pain around that time of the month. Do you take Tramadol at those times? I really like Tramadol for pelvic pain which is usually more of an issue when the diarrhea is worse- hard to say if the pain causes the diarrhea or vice versa. But I am trying to get off of the Tramadol because it is a hassle to have to go to the Dr to get it renewed, especially since they (unfairly) tightened the rules on pain meds last year where they can't give you as many pills at a time so you have to go more frequently. Plus it puts pressure on Drs to not prescribe them which I think is terrible- it's like they are going out on a limb by trying to offer us relief.I have been taking it very sparingly-I do know that SIBO experts frown on pain meds as well but they are simply the only thing that helps when things get really bad.I just ordered a supplement called Cramp Bark which is said to be good for period pain, or pelvic pain even if you are post-menopausal as I am, besides having had a partial hysterectomy. I will let you know what I think of it.


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## Oceangirl

I don't know if it would just do the same thing but you can get more iron from cooking in a cast iron skillet. The vitamins with iron I take come from food sources. I've been lucky it doesn't affect my digestion.

I have been taking magnesium pills and I think it really helps with my cramps. However I think the magnesium/calcium pills make me tired if I take them for more than one day in a row. I feel like I've been drugged and get extremely drowsy. It's hard to keep my eyes open. So I just take them on occasion and on my period a bit when I can stay home and do nothing. I was suprised how many illnesses you can have from low magnesium. I have tramadol which I have had to take for my period at times when it's really bad. I can't mix it with my ativan though so if I get a panic attack on the Tramadol that would be bad which makes me worry etc so I only take it when I really have to. I actually took them both at once before I knew there was a bad interaction and I felt wonderful no anxiety and no pain but I guess both are sedatives that can cause respiratory failure so won't be doing that again.

My nueropathic doctor wrote something to my regular doctor to get him to give me the first round of treatments. Integrative medicine doctors tend to listen more. My first appointment was an hour long. It was 200 bucks though. Most nueropathic type doctors have long first appointments and really listen to you about what is going on.

If they did find out the valve was the issue is there a surgery to fix it? It really sounds like that might be your problem. To bad you can't see Pimentel but you have to have another doctor refer you to him.


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## jaumeb

Iron supplements are problematic in general. It's better to use a natural source such as liver. Iron supps make the live easier for the bad bugs in our gut.

I understand that if you are vegetarian liver is not an option.


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## AIRPLANE

I think that you are right about the iron supplements, Jaumeb. From what I have read from other people, there seems to be no iron supplement that doesn't cause negative digestive symptoms, including the ones that claim they are gentle and non-constipating. I know that there are a few vegetable sources of iron-like spinach- but you can only eat so much of that. And with our gastro issues, our diets are pretty limited. I do eat seafood but I don't think that it helps with iron. I should be eating legumes regularly but of course I can't for obvious reasons.

Yes, Oceangirl, I mentioned the cast-iron skillet idea to my mother but she said that she heard that it actually wasn't true- that it didn't really help. She was going to try getting more iron from diet- spinach, maybe some liver but she can only eat so much of it. She recently had a Dr appointment and had her iron levels checked again and they were still very low, almost like someone with internal bleeding would have but the Dr had no idea why it is so low.

Yes, I wish that I could take magnesium because I have heard that it is good for aches and pains but after trying several types (no magnesium oxide, of course since it is in many laxatives) I found that I couldn't tolerate it.

These are problems that I think some of us have because we have to limit our diets so much. And despite whatever tests our Drs have done and being told that we are not deficient, I think that some of us are. I wonder if those tests are all that reliable. Or if they are as bad as the typical thyroid tests, which don't sound very good.

Yes, I wish that I could go to Cedars Sinai's motility department. From what I hear, Dr Pimentel doesn't see new patients but his colleagues do. Problem is I don't live on the west coast and really am not up for traveling, plus I wouldn't be able to have ongoing tests/treatments in that case. We really need to have help available where we live. Ironically I live in an area where you would think that I could find a motivated, competent gastroenterologist but it hasn't been the case. No help whatsoever from the MN Mayo of course or in Minneapolis.

I agree that if you can find an integrated or naturopathic Dr that it is a good possibility. But even then it can be hit and miss. I recently read Sophie Lee's book about her life with IBS (a very good read that can make you cry at times because it is so familiar). She talked about the problems with some alternative practitioners which I agreed with. Some of them seem to have beliefs that everyone's problems are due to Candida or some other particular thing and treat every patient the same which of course doesn't help. And many of them insist on a particular diet which often simply isn't doable for everyone. We are each unique and one-size doesn't fit all. When it comes to food I think that we have to listen to our own bodies and find which ones cause the fewest problems.

And of course, it still irritates me that I would have to pay for it myself. Our problems are valid ones and we should be able to get insurance coverage for it. I pay enough for it, yet rarely use it.


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## Oceangirl

Hi everyone I just wanted to give you an update. I have still been doing wonderful and have not been sick. If my SIBO starts acting up, I just stop eating anything that has sugar in it and I feel better.


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## jaumeb

Oceangirl said:


> Hi everyone I just wanted to give you an update. I have still been doing wonderful and have not been sick. If my SIBO starts acting up, I just stop eating anything that has sugar in it and I feel better.


I am glad to read that you are doing so well. Sugar is toxic.


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## rajiv_gupta

i have undergone colonoscopy its all fine & upper endoscopy pan gastritis was seen. Also numerous blood tests, MRI Scans, ultrasound scan and X-rays of the abdomen and all have come fine.

so the doc prescribed me PPI to control gastritis.

i don't know for how many years i have been taking VSL#3 ( probiotic ), Rifaximin, Amitriptyline, Calcium supplements, PPI & IBSET.

but all these drug regimen hasn't cured my IBS D.

Now for some time i have been following the protocol recommended by Dr. Mark Pimentel like no snacking between the meals, take low dose of erythromycin & refrain from Diary products.

But the outcome is bleak as ever.

whenever i had tried to go off Rifaximin the symptoms have come back with lot of vengeance.

Gastroenterologist in India have no clue of Vivonex or similar elemental diets so can't take vivonex.

any insights or Advise on how to manage IBS D which has wreaked havoc with life and forced me to confine at home.


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## MaximilianKohler

Try these: [Jarrow's s.boulardii](http://www.amazon.com/gp/product/B0013OVW0E) plus [Reuteri Pearls](http://www.amazon.com/dp/B000O3GCSW), plus [culturelle ](http://www.amazon.com/gp/product/B007A2YQV0), plus [align](http://www.amazon.com/dp/B000W4PNDS), plus [brewer's yeast](http://www.amazon.com/gp/product/B000EPUPSS).

I also took rifaximin (and other antibiotics), and I've found these probiotics to be a lot more effective than VSL#3. Maybe only take the Jarrow's for 1 week, but continue the others beyond that.

More info in my sig about things that have helped me.


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## Oceangirl

Antibiotics also destroy a lot of microbes and I've read that we used to get trace amounts of dirt in our foods but our produce is so clean now that we don't get any so I go to my farmers market and lightly rinse my produce to get some of those microbes. I also am on the Paleo diet and that helps a lot to.


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## MaximilianKohler

Oceangirl said:


> Antibiotics also destroy a lot of microbes and I've read that we used to get trace amounts of dirt in our foods but our produce is so clean now that we don't get any so I go to my farmers market and lightly rinse my produce to get some of those microbes. I also am on the Paleo diet and that helps a lot to.


I've heard that too, but I'm very skeptical that soil bacteria is good for us. I took a soil bacteria probiotic and it not only overpowered the probiotics that were previously giving me great results, but it gave me HORRIBLE, brand new symptoms.

The probiotic was Prescript-Assist. It caused: breathing difficulty & chest tightness/heaviness from youth to come back. Increased fatigue. Made BMs soft & muddy. Makes me feel and look (dark under eyes, face pale/white) sick and feverish. Doesn't seem to have any benefits. Massive inflammation (joint stiffness, body hot like niacin flush, hands on fire when in cold water) and horrible temperature intolerance & high TSH. Nausea, queasiness.

And the more I read about soil bacteria, the more dangerous/bad they seem. Here's one example where a medical professional says getting dirty generally makes inflammation worse (exactly my experience): https://theconversation.com/if-being-too-clean-makes-us-sick-why-isnt-getting-dirty-the-solution-50572


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## Oceangirl

Oh wow that's crazy. From my understanding the microbes are supposed to be trace amounts not a large amount you'd find in pill form.


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## MaximilianKohler

No, that's definitely not correct. Most of the mass of your BM is bacteria. http://www.ncbi.nlm.nih.gov/pubmed/7359576


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## rewinj

MaximilianKohler said:


> Try these: [Jarrow's s.boulardii](http://www.amazon.com/gp/product/B0013OVW0E) plus [Reuteri Pearls](http://www.amazon.com/dp/B000O3GCSW), plus [culturelle ](http://www.amazon.com/gp/product/B007A2YQV0), plus [align](http://www.amazon.com/dp/B000W4PNDS), plus [brewer's yeast](http://www.amazon.com/gp/product/B000EPUPSS).
> 
> I also took rifaximin (and other antibiotics), and I've found these probiotics to be a lot more effective than VSL#3. Maybe only take the Jarrow's for 1 week, but continue the others beyond that.
> 
> More info in my sig about things that have helped me.


Bit confused by this post... were you taking all these probiotics at the same time? Combinations of 2 at a time? Were certain ones particularly helpful?


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## MaximilianKohler

rewinj said:


> Bit confused by this post... were you taking all these probiotics at the same time? Combinations of 2 at a time? Were certain ones particularly helpful?


Yes, I take all these 3: Reuteri pearls, align, culturelle. I also eat some brewer's yeast. S.Boulardii seems to have only short term benefits for me so I stopped taking it.

I tried a soil bacteria probiotic called Prescript-Assist that had horrible affects on me ( https://www.amazon.com/review/R1UA8D182MJAIJ/ref=cm_cr_rdp_perm ), and it also overpowered those 3 probiotics I was getting great results from. So currently I'm on a 0 fiber diet that is helping to suppress the soil bacteria symptoms, and I'm also experimenting with fermenting those 3 main probiotics to try and boost them enough to overpower the soil bacteria. I'll be making a post on reddit.com/r/microbiome about it soon.


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## minimalizer

And, aloe is a natural antibiotic so space anything like that away from taking any probiotics;But, It shouldn't harm the good yeast Saccharomyces boulardii. So, It could be that one could try it before trying and during the antibiotic and ongoingly, which might have been better. The Jarrow Saccharomyces boulardii that I saw now anyway contains a prebiotic that can feed overgrowth of bad bacteria as well. So, stay away from FOS, MOS, Chicory/Inulin or any new PREbiotics they come out with on the market. It's ok for healthy people, otherwise major gas irritation for us.


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## Oceangirl

That's good advice minimalizer. I was telling my friend the other day to only take Saccharomyces Boulardii without the MOS, etc, I can't handle any other probiotics. I think because it is a yeast type of probiotic. My friend was having diarrhea and wanted to take probiotics and took a general strain and it got much worse like I suspected might happen. To many probiotics I think make things worse for a lot of people. Cutting out excess sugar when you feel sick seems to have the greatest benefit.


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