# I tested positive for the SIBO after 12 yrs IBS-D, Here is my story and questions!!??



## kimber

Hello I also posted this message on the IBS forum, but I wanted to post it here as well. I have been posting on this site off and on for a few years now. I have had IBS D for about 12 years now,and it has taken over my life. I was able to work at one time, but not any more. I am a 26 year old female and I was married 4 years ago. I have had ALL the testing and like most of you they have found nothing. My IBS has had it's ups and downs over the years, but lately it has been at it's all time worst. I very very rarely even leave the house. I am always having stomach aches, but for me what's worse than the D is the cramping, the cramping is horrible. I hate living with an uncomfortable feeling in my bowels everyday. THere has got to be a better way to live then this. I know that God has a better future for me, I can't imagine living like this for the rest of my life. I fell like my life is passing me by, each day I wake up hoping to make it to tomorrow with not a lot of cramping, and then the next day the same thing. I hate wishing my days away, I want to LIVE my life and ENJOY LIVING it. Anyway I'm rambling now you all know what that feels like, but recently I read Dr. Pimentel's new book and I was really interested in the SIBO theory. So initially I went into my GI and talked it over with him and he agreed to try me on the rafiximin, and I didn't notice much change, but then I realized that I wasn't on the right dose. My doc had me on 400 mg a day, and Dr. Pimentel gives his patients 1200 mg a day for 10 days. So I stopped the antibiotics after 8 days or so and talked things over with my doctor. I told him that I wanted to have the breath test done so I knew if I even had the SIBO before I went the route of antibiotics. He didn't know any place near our town that offered the test, but when I went home I did my own research. I have found that even if the docs are nice and caring, they don't understand what it is like to live with this disorder and I realized I have to be my own advocate if I want to find help, so I found that I could have the test sent to my docs office from Quintron. So my doc ordered 2 at home tests and they sent them to him within a week. I had to wait 3 weeks after taking the previous low dose antibiotics to take the breath test. I did the breath test this past Monday at my own home. That was nice to be able to be at home. It is fairly easy to do yourself, you just have to follow the instruction, and also Quintron sends their 800 number that you can call anytime with questions and they answer really quickly. So the test consists of ten test tubes and a breath bag/container, and some labels and then the lactulose powder. It is a small amount of lactulose powder, and you mix it with 8 oz of water to drink it. First though you have to take a breath sample before you drink the lactulose, it is simple to take the samples. you breath into the container and the bag fills with your breath, then out of the side of the container there is a place to insert a test tube, so as you exhale your breath you insert a test tube and the air fills into the tube just like it does the bag and then you pull out the tube and set it aside. It seals itelf once you pull it out. So then after the intial breath sample you drink the solution, it tastes like sugar water, and then every 20 minutes you give another breath sample, you continue this for 3 hours so you wind up with 10 samples total. Then you place the labels on the samples and place the samples back into the box with the provided bubble wrap and mail it to the lab, they give you a prepaid box with the address label already on it. So the test wasn't so bad, after I drank the solution about 1 hour later my tummy started gurgling and I was gassy and then I had about to trips of D, but it wasn't too bad and then I was mostly gassy but not real bad for the rest of the afternoon. So my samples were mailed to the lab and they tested for methane and hydrogen levels. The results came back today and I tested 0% for methane which meant it was negative and then for the hydrogen I tested positive for the SIBO with the hydrogen level. Now the lab and my doc went over the results with me. They said that they look for a 20% increase in hydrogen to determine if you have SIBO, if you have 20% then it is postive, NOW MY TEST came back with a 70% increase in hydrogen. So they said I have a extremley high level of SIBO. So to me this is atleast some good news. I have had sooooo many tests over the years all coming back normal, this is the first time they have found physical evidence of something wrong. So now my doc and I are going to follow Dr. Pimentels protocol for trying to get rid of this. I know some people have had success while others have not. I think it is sooooo important for people to get tested for the SIBO with the breath test FIRST before you start any treatments. That way you can get a baseline to see if you even have SIBO and then later if the antibiotics helped to get rid of all of it or atleast some of it. If you don't get tested first, you are guessing, well that is how I felt. I wanted people to know that you can have your doc order the breath test kits from Quintron so you can do them at home. The number for Quintron is 1 800 542-4448. They are really helpful there. So that is where I am at, I don't know if this will work, but atleast now I know for sure that I do have the SIBO. I hope the antibiotics will work, I start them on Monday I will take the Rafiximin 1200 mg a day for 10 days and we'll see what happens. Has anyone else done this protocol for IBS D and had any relief or help from the symptoms. I have heard that some people have great results and some have the SIBO come back after the antibiotics are done,if that happens than I guess the next question is why does it grow back, what is causing the SIBO to come back in some people and not in others. Any info that on this or any experiences would be great to hear about. I have also started the IBS Audio Program about 2 weeks ago, and I feel more relaxed, but so far still have the tummy aches, but I know I'm still early in trying them, and I'll keep listening even while I'm trying to get rid of the SIBO. So again if anyone else has any info to offer or stories to share I would love to hear any success or other stories. Thank you for reading this and I will keep you posted on my progress. Blessings, Kimber


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## 22001

Cool Kimber,I hope the SIBO treatment cure you. Keep in contact.Good luck!AndrÃ©


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## betterthroughscience

Wow. Your experience just goes to show that you have to be your own advocate with most doctors. If you are lucky enough to work with a doctor who specializes in IBS things are easier, but it is still a good idea to know what kind of testing is available. Many people who post on this site begin by saying they have had all the tests, but most have never been tested for bacterial issues, food allergies (by ELISA methods under tight quality control), celiac disease, or parasites (by stool examination).Good luck with your treatments. It sounds like you found a treatable condition.


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## Popp

Good Luck with this Kimber!About the testing kit, what kind of price are we looking at?


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## kimber

Thank you for you good thoughts and good wishes. I am hoping that this works too. I have been through practically every test, I have even been tested for celiac and lactose intolerance, plus I've had all the parasite stool tests, blood tests, colonoscopy, upper endoscopy, barium enema and many many more. This breath test for the SIBO was new for me and I'm SOOOO glad I did it. OK for Popp, as for the cost of the test. The company Quintron will send the test kit to your doctors office FREE of charge. You then take the test yourself or your doc might want you to take it at his/her office (My doc let me do it myself at home and it was fine) Then once the test is done you mail it back to a lab in Massachusettes and Quintron sends you a pre paid pre addressed box so you do not pay the shipping to send the test to the lab. So far I have had no charges. I was told by Quintron that the only charge I will have is from the lab, and I sent the lab my insurance information on the form they sent to me with the test kit, so I have not received a bill yet they are sending it to my insurance first. I usually check ahead of time with my insurance for mosts tests, but this time I did not. So I'm not sure if it is covered under MY insurance or not, I'll just wait to see what the bill says. But as of now I have not paid anything. Oh Quintron did say that if your doctor has you do the test in his office instead of at your home, the doc might charge you the office visit co pay, but that was not the case with me. I hope that helps a little. You can probably call Quintron and get a code # for the test kit and then call your insurance to see what they will pay. I will post on the boards when I get a bill, and let you know what I wind up paying for it. I REALLY encourage people to at least take this test so you can either rule it out or start dealing with this new issue. I will keep everyone posted on what happens with me. And again if anyone has done this yet please share your experiences and if you have had any side effects from the rafiximin, and your outcome after the treatment. Thank you for your responses.Blessings,Kimber


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## kimber

Hello,I just wanted to let you all know that I started the rafiximin today 1200 mg a day for 10 days. I will keep you posted on how I feel over the next few days. I'm praying that this really helps me. Thanks for the support.Kimber


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## kimber

Hello everyone,Sorry it took me a while to post an update. I am now on day 7 of the rafiximin. I am feeling better. I didn't notice any difference on days 1-4, but then on day 5 I noticed I was feeling a little better, I had a little tummy ache in the morning, but no D just softer stool, and then I was fine the rest of the day. Day 6 I had a little cramping during the day, but not bad at all, and today so far I feel ok. I had a little cramping with my BM this morning, but not bad and my BM was formed and not as soft as it usually is, much better. We'll see I have until day 10. Then I will re test to see if the bacteria is still there or any better, or what it is doing. I will keep you all posted.Kimber


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## gilly

Thats great kimber!Have you seen in Pimentels book about preventing the bacteria coming back by staying on a low dose of erythromycin or zelnorm?Would be worth doing I think Good Luck,Gilly


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## cynthia

Hi Kimber, I've been searching for almost 2 years to help my son who's been suffering from extreme bloating/ upper body gas. About 1 year ago someone (not any of the doctors I took him to) suggested he might have SIBO. Even though we got the diagnosis, I've never found anything that can totally get rid of this bacteria. - I'm so hoping the rafiximin works for you. Please keep us posted. I'll be checking everyday!Cynthia


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## kimber

Well I am on day 8 right now, and I feel ok, I don't feel horrible, I still feel about the same as yesterday, it's an improvement from day 1, but not a drastic improvement. Two more days of the antibiotic and then we'll see. I have heard that some people feel better a few days after the antibiotics are done, so I'll keep you posted. And Gilly, I have Dr. Pimentel's book, and I did read about the zelnorm, I am going to wait and see what happens. I don't want the bacteria to come back, but I am also nervous to start taking the zelnorm, since I am IBS D. I know it is ok to take with IBS D, but I am very cautious about that. Thank you for the suggestion though. Cynthia, I am sorry to hear that your son is having so much trouble. I hope the rafiximin works too, if not I know that Dr. Pimentel suggests that if the bacteria is still there to follow up with a second round of treatment using the rafiximin and also another antibiotic called Neomycin. So if I have to do that I will, and I will keep you updated on that as well. Thanks for your support, I really appreciate everyone's imput. I'll be back tomorrow with another update.Blessings,Kimber


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## cynthia

Hi Kimber, Glad to hear that you've had some improvement. Even if the bacteria is not totally gone after this first round of the riflaximin, it's good to know that there's a plan in place to follow up. I wasn't able to get the Pimental book (it was out of print when I went looking for it in June) so I don't have first hand knowledge of his recommendations. If you still have some bacteria remaining after the first 10 days how long do you wait between the 2 rounds of riflaximin? Does he suggest any certain diet or supplements while doing the antibiotic and between rounds of antibiotics? - Just remember, any improvement is a step in the right direction. Will watch for your next entry. Best, Cynthia


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## kimber

Hello everyoneToday is day 9 of the treatment and I had a great morning and afternoon, I was actually able to get out of the house with my mom, sister, and best friend. We went to Target and Costco, AND we went out to lunch. Although I played it safe and had a small turkey sandwhich, but that was an improvement. I hardly ever leave the house. But then this evening I started feeling the old rumbly in my tummy. It hasn't turned into a bad episode yet, but I definitley have the uncomfortable feeling in my tummy right now. So tomorrow is my last day of the treatment, and I have to say I don't think this first round worked. I have seen some improvement, but not a huge amount. Maybe day 10 will be the miraculous healing day







Let's hope so. Cynthia, when I was looking for Pimentels book locally it was out of stock too, but then I found it on Amazon.com. But anyway I know the first round of antibiotics is 1200 mg daily of rafiximin. Then if you have bacteria remaining the treatment is a combination of rafiximin and neomycin. Now the book does not state the doses for the second round of antibiotics, and it does not say how long to wait after the first round. I know it says to wait 4-10 days after the first round of antibiotics before taking the breath test again. i am assuming if the breath test comes back still showing a positive of the SIBO, then I'm assuming I can start the second round right away. I have put a call into Dr. Pimentel's office to find out the exact doses and instructions for round 2. Hopefully I will hear back soon. Dr. Pimentel is not my doctor, but I live in northern ca and he is in southern ca, so I have been able to call his office through out all of this and they have been so helpful in guiding me through his process. So I will let you know what I hear from them. Also as far as diet stuff his book does give diet instructions while doing the antibiotic treatments. Basically it says:1. Try to avoid sweeteners like corn syrup (frutose), sorbitol, splenda, and lactose(milk sugar, so basically dairy products) It says the biggest culprit is sugar free gum. It states that a lot of foods have these sugars, so try to limit them to no more then 40 grams per day(ideally much less)2. Limit or eliminate the following High residue foods (foods that are difficult to digest): beans, lentils, peas, soy products, tofu, yogurt, milk and cheese(100% lactaid milk is acceptable)3. Drink 8 cups of water a day. Try 2 cups with each meal and then 1 cup between breakfast/lunch and 1 cup between lunch/dinner4. Beef, fish, poultry, and eggs are acceptable foods. You do not need to limit these foods. however eat portions that are appropriate for your body size.5. potatoes, pasta, rice, bread, and cereals are also acceptable. It's alright to include some of these foods at each meal. But eat no more then 1/2 to 1 cup of these foods at each meal. White bread is the best in this circumstance. Avoid multigrain breads, and avoid wild rice.6. Fruits should be eaten in moderation- two servings per day. Fruits contain frutose, which is difficult to digest so choose fresh not dried fruits. 7. Fresh non starchy vegtables should be part of your daily food intake. Cooked or lightly steamed are better then raw. Raw veggies are hard to digest. Avoid large salads, try to incorporate small salads. 8. Dairy should be avoided because the lactose it contains. Do not substitute with soy milk. Try rice milk or almond milk, or Lactaid milk.9. Coffee, tea, and sodas should only be consumed in moderation. The best of these choices is tea.10. Make sure you have a balanced diet and you get sufficient calories. Also incorporate excersise into your weekly routine at least every other day.So that is his guidlines in the book. he also gives a 5 day menu examples. He also says as far as supplements that fiber supplements should not be taken during the treatment and also he advices that you not take probiotics during the treatment phase. I hope that helps answer some of your questions. Feel free to email me directly if you ever want to kmramsey02###yahoo.com I will post tomorrow for day 10, but I will also keep posting about the second round info. Thanks for your encouragement Cynthia, I know we are moving in the right diretion. I pray for a cure every day.Blessings,Kimber


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## kimber

Hello everyone, Well today was day 10 of the treatment and believe it or not today was my worst day during the 10 days. During the treatment I actually noticed an improvement, slight, but it was improvement, but today was not such a great day. It wasn't as bad as I've had that is for sure, but it was the worst out of the ten day treatment. So I think it is safe to say that this first round of antibiotics did not work for me. i am going to take the breath test again next week and see if any of the bacteria have been killed off or if they are all still there. Then if there are any still there, which I am almost positive there will be, then I will try round two of the antibiotics, combining rafiximin and neomycin. Has anyone tried the second round or combined the rafiximin with the neomycin before?? I was wondering if that made a difference for anyone else? So then I will go from there. I will post as I know more. Thanks,Kimber


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## eric

FYIFrom Medscape General Medicineâ„¢MedGenMed GastroenterologyIBS -- Review and What's NewPosted 07/26/2006Amy Foxx-Orenstein, DO, FACG, FACP "Small Intestinal Bacterial OvergrowthThe presence of a higher than usual population of bacteria in the small intestine (leading to bacterial fermentation of poorly digestible starches and subsequent gas production) has been proposed as a potential etiologic factor in IBS.[71] Pimentel and colleagues have shown that, when measured by the lactose hydrogen breath test (LHBT), small intestinal bacterial overgrowth (SIBO) has been detected in 78% to 84% of patients with IBS.[71,72] However, the accuracy of the LHBT in testing for the presence of SIBO has been questioned.[73] Sensitivity of the LHBT for SIBO has been shown to be as low as 16.7%, and specificity approximately 70%.[74] Additionally, this test may suboptimally assess treatment response.[75] The glucose breath test has been shown to be a more reliable tool,[76] with a 75% sensitivity for SIBO[77] vs 39% with LHBT for the "double-peak" method of SIBO detection.[74] In a recently conducted retrospective study involving review of patient charts for the presence of gastrointestinal-related symptoms (including IBS) in patients who were referred for glucose hydrogen breath tests for SIBO, of 113 patients who met Rome II criteria for IBS, 11% tested positive for SIBO.[78] Thus, results demonstrated that IBS symptoms are often unrelated to the presence of SIBO. Despite the controversy regarding the contribution of SIBO to the underlying pathophysiology of IBS and its symptoms, short-term placebo-controlled clinical studies with select antibiotics, including neomycin and rifaximin, have demonstrated symptom improvement in IBS patients.[61,72,79] Antibiotics may therefore have potential utility in select subgroups of IBS patients in whom SIBO contributes to symptoms. However, the chronic nature of IBS symptoms often leads to the need for long-term treatment. Given the fact that long-term use of antibiotics is generally undesirable, the place of antibiotics in IBS therapy remains to be established.[73]"Abstract and IntroductionMaking a Positive Diagnosis of IBSThe Science of IBSIBS TreatmentsConclusionhttp://www.medscape.com/viewarticle/532089_3


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## David LA

Hi Kimber,-Just wanted to wish you good luck with Dr.Pimentel's Protocol. I know several people that have been helped my his work. In his book.."A New IBS Solution" he stated that sometimes you need a couple rounds of treatmentbefore it takes. I hope the first round is all you need!


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## cynthia

Hi Intuition, Kimber and All,Intuition - So sorry for all you've been through. It's such a dreadful journey but you're not alone and remeber that you will be able to return to good health. I too think Dr Pimental's work makes alot of sense. And yet, I'm concerned that I've never read a success story from someone taking Riflaximin. I keep reading about situations that are just like Intuition's experience (worked while taking and symptoms returned as soon as drug stopped) or like Kimber's experience (just didn't work even though she tested positive for hydrogen). Does anyone out there have a success story to tell us after having taken Riflaximin for SIBO? Please tell us. I for one need hope.Thanks,Cynthia


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## cynthia

I'm counting on the Rifaximin being the answer for my son. I was planning on doing it within the next couple of weeks before school started back up again. Aside from it being Pimental's choice of drug, the fact that there are minimal side effects because it's not absorbed into the body from the digestive tract was huge for me. We're going to try it - I was just looking for some first hand positive news.


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## Talissa

Hi guys,From some of the above info, its made to sound like Rifaximin is pretty safe & w/o side effects. But if you search the archives here, you'll find at least 2 people who had some very bad reactions to taking it. Also, its only technically approved by the FDA to treat travellers D caused by one specific bacteria. It can cause overgrowths of others bacteria which are resistant to rifaximin(ie, the nasty & hard to detect b. fragilis).Hence~~"Rifaximin may promote intestinal bacterial overgrowth and cause superinfection; discontinue if diarrhea persists >24-48 h or worsens; seek immediate medical care if fever and/or bloody stools emerge (tablets not effective); not effective for travelers' diarrhea due to suspected pathogens other than E coli; postmarketing reports include allergic dermatitis, rash, angioneurotic edema, urticaria, and pruritus."http://master.emedicine.com/med/topic734.htmAnd w/e you do, DON'T take imodium while on rifaximin nor afterwards. It can make diarrhea worsen &/or last longer w/ pain.


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## cynthia

Hi Talissa,I'm searching this site but can't find people who had reactions to Rifaximin. Please help. All information is helpful.Thanks,Cynthia


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## Talissa

Hi Cynthia, The discussions came up last Feb. Rose & Gwenn had problems with it: Bacterial Growth  Antibiotic May Be Answer to IBS  You can also find a full list of possible side effects from it here:http://www.rxlist.com/cgi/generic/xifaxan_ad.htmThat's great you're being this thorough so you can make an informed decision that you've weighed carefully. I'm impressed!T-


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## 23173

Hi,One thing that you may consider is that the bacteria that have infected you are spore forming. Therefore although the antibiotics kill the bacteria resulting in you feeling better the spores later germinate and you feel ill again. Bacteria in the clostridium family are spore forming.I am currently being treated for a condition similar to yours. See my post: http://ibsgroup.org/groupee/forums/a/tpc/f...261/m/368101152Perhaps a treatment involving antibitoics and HPI might be appropriate treatment for you.Regards,Alex


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## cynthia

Alex - With regard to clostridium bacteria, after searching it online I found articles that say it only resides in the large intestine not the small. Is that correct?Talissa - I notice in one of your links to people doing antibiotics, there was mention of taking probiotics after completing the antibiotics. Does anyone take them in conjuncion with each other - just different times of day and at least 2 hours apart?Cynthia


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## Pete

Intuition,I am doing well 6 months after being on rifaximin for 2 weeks. I have my symptoms come back too when I go off so I take a small maintenance dose daily. I only take 1 rifaximin pill a day. Dr. Pimental prescribes this to some people who have trouble with zelnorm.


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## Talissa

Cynthia, A good rule of thumb is to take the probiotics either 1 hour before taking the antibiotics or 3 hours afterwards. Culturelle & Florastor are 2 probiotics proven clinically to help bacterial balance during an antibiotics course. I hope things improve for you.Alex, Do you live in Australia? You're very lucky to be treated by Dr Borody. I've read about several peeps on other boards who've been put into remission w/ fecal transfusion. I'd do it in a heartbeat if I lived in Australia...Although I do understand he'll assist other MDs long distance. I hope you keep us updated. Best of luck with it all!! T-


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## 23173

Talissa, yes I live in Australia. I have heard that Dr Borody's clinic will work with overseas patients, so if u r interested in HPI perhaps u could follow up that option.Cynthia, I am concerned what I have read within this forum that the antibiotic seems to provide only temporary resolution to the problem. This is why I would consider the possibility that the meds have not completely eradicated all forms of the bacteria/parasite. If you haven't already I would also get stool and blood testing done.


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## cynthia

Alex,Just wanted to reask a question from few posts ago. - With regard to clostridium bacteria, does it only reside in the large intestine and never the small? That's what I got from online articles I read and wanted to confirm that I'm understanding that correctly.Thanks, Cynthia


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## David LA

Hi Intuition-Sorry your having to deal with this"condition from Hell" You must have been so happy to finally have had a normal BM. For me, It felt like a just won the "Indy 500" people that don't suffer from this condition have a very difficult time relating to it. I hope everything works out for you!! And if you ever have to get in touch will Dr. Pimentel. Please let know, I might be able to help you.


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## 23173

Cynthia,I'm afraid I don't know the answer to your question regarding the clostridium bacteria living in the small or large intestine.


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## kimber

Hello everyone, Oh my goodness I was offline for a few days and I see that there were a lot of responses to my post. I'm glad I think it is so important that we all share our SIBO information since it is so new, the more we know the better chance we have in finding help for it. So I have an update on my situation. As you know from my posts above, I finished the 10 day treatment of rafiximin at 1200 mg a day. And I feel a little better, but nothing drastic. So I re did the breath test this week and got my results back today. I tested positive for the SIBO again, which I expected since I don't feel a ton better. My first test before the treatment came back showing that I had a 70% increase in hydrogen gas, and this second test today came back showing that I had a 59% increase in hydrogen gas. So it seems like I have killed off a little bit of the bacteria. Not much, but some. I spoke to the lab that does this testing and they said that when they do this test they look to see your % increase of hydrogen and methane gas. If show a 20% increase then they send results to your doc stating you have bacterial overgrowth. She said that my 70% and 59% increases were very high. She said I have a high level of the SIBO. So no wonder I have been so sick for the last 12 years. Now I just have to find a way to kill off all the bacteria and see if I feel better again. I spoke to Dr pimentel's office last week and they said that since I have finished round 1 treatment now dr pimentel would like to talk to my GI doc to recommend treatment for round 2. The nurse told me that Dr pimentel said that each patient is different so he wants to talk to my GI to get the specifics of my case and then recommend the right treatment for round 2. I faxed the newest breath test results to dr pimentel today. He is suppose to talk to my doc on Monday. I am hoping that they talk because my doc is on vacation this week and next Tues dr pimentel goes on vacation, so I hope they connect on monday. It is like pulling teeth to get 2 docs to connect on the phone. Sometimes working with the office staff can be so frusterating, although dr pimentels staff has been so helpful and nice. My Gi has been wonderful so far, but he seems hesitant to talk to dr pimentel, even though he has agreed to talk to him he just seems reluctant, he seems like he doesn't need another doc to tell him how to treat his patient. The whole ego thing drives me crazy. He also doesn't agree with dr pimentel using Neomycin, he says that he has heard of some horror stories with that antibiotic and says it has had bad side effects and problems. i told him that he should ask dr pimentel about that and dr pimentel can explain why he chooses to use it. It is so frusterating when your life is waiting on a doctor. I know more about my case then my doctor does. I am the one who does all the research and then tells him the newest things out there. I wish we didn't have to wait on docs to treat us, i wish we could treat ourselves sometimes. My doc is on vacation this week, must be nice, I only wish I could go on a vacation. Sometimes I realize just how much doctors do not understand what it is like to live with this condition every day. Sorry I just had to vent that. So now I wait, until the 2 docs can talk and decide on my next treatment plan. The thing is that this SIBO has been the first thing in years to actually show something wrong with me so I am ready to jump on the band wagon and find the right treatment to get rid of it, but my doc seems hesitant to believe that the SIBO is the only problem. So we'll see how it goes.Anyway, I was so glad to get responses back from everyone:Cynthia: I am so glad we keep each other posted. we have been emailing each other directly and it is nice to keep things updated.If anyone else wants to email me directly please feel free it's kmramsey02###yahoo.com Intuition: I am so glad that you posted, and that your husband encouraged you to. I too have a wonderful supportive husband with this stuff. He is my rock!! Anyway a few things, I am soooo glad to hear that the rafiximin worked for you atleast for a little while. I'm sorry to hear that your doc just won't get on board. That can be so frusterating. My doc seems hesitant at times, but so far he has been willing to do what I ask. If only the docs had to live with this stuff then maybe they would start really listening to us. I have suffered for 12 years, like you, and am so ready to get my life back too. I am so glad to hear that you got an appt with dr pimentel. Please keep us posted on how that appt goes. I have not seen him myself, but am trying to have him work by phone with my doc. Please keep me posted you can email me directly at kmramsey02###yahoo.com I am anxious to hear how your appt in Sept goes. I think something has got to work to get rid of this. I only did the first round of rafiximin 1200mg 10 days, and noticed a slight improvement, but not much, maybe you are right and we just need to take it longer. That makes sense to me. I will be praying for you that your appt goes well. We've got to hang in there together and we will overcome this stuff. So thank you for the post and the information, good luck and I look forward to hearing from you.David: Thanks for the encouragement. And thank you for taking the time to talk with me by phone a while back. I learned a lot talking with you, and have tried to change my diet and it seems to help some. I'm hoping this protocol with pimentel helps, I might make the drive down to see him in person if it comes down to that, I'm only about an 7 hour drive from you guys down there. Take care, and I hope you are feeling good.Alex: I am glad to hear that you are in with a good Doctor. I don't know about Dr. Borody, but from what I've read on these posts you are in good hands. I will be praying that his treatment helps you and please keep us posted on your treatment.Pete: So the rafiximin worked for you after 2 weeks of treatment. That is wonderful!!! I hope it stays that way. So you are still taking one rafiximin a day instead of the zelnorm, I haven't heard of that, but it makes sense. I know dr pimentel suggests zelnorm after getting rid of the bacteria, but I am sooooo hesitant to go on zelnorm when my problem is diarrhea predominant IBS. So I'm glad there are other options out there. I am so glad we are all sharing our info. I hope we find the right treatment to be a success for all of us. I will keep everyone posted on what happens with me and what the 2 docs decide during there phone meeting on monday. Good luck everyone, I know we can overcome this, even though there are many days when I cry to my husband and think I can't do this one more day or have one more stomach ache, I know I will get through it, we all will. I have hope that we will find a cure. Let's hang in there!!Blessings,Kimber


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## Pete

Kimber,Rifaximin has really improved my life. Like I said I did the 2 week thing and now I just take one 200 mg pill per day. I have been doing this for 6 to 8 months. My doc called Pimental and was surprised how nice he was and how long he spent on the phone with her. I have a great doc since she is my sister. She talked to Pimental for almost one hour. He likes zelnorm at bedtime to flush out the bacteria but says if it can't be tolerated that it is safe to take rifaximin daily. I have had great results but it is not a cure. I have found that I also need to stay on a low fructose diet and also take the probiotic VSL#3. Pimental feels this probiotic may be beneficial but he is not sure so he recommends not taking them. Good luck. Bad news is i can't eat sugar, good news is vodka doesn't hurt. I think Pimental and Borody are the 2 best GIS in the world. Pete


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## cynthia

Kimber, I think it's great that you've shown improvement with the Rifaximin. Even though it's not as much as you would have liked, you're going in the right direction. I hope the 2 doctors get to talk about your case on Monday. Keep us posted. I know how frustrating doctors can be - which brings me to -Pete, You're incredibly lucky to have your sister as your doctor. - So glad to hear about how Rifaximin has helped you. It's such encouragement for the rest of us to hear a success story. Thanks.Cynthia


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## David LA

Hi Kimber-I also enjoyed really enjoyed speaking with you. I'm glad the diet tips helped a little.Have you tried any of the hot/warm baths? I've had several more people tell me when they were on Pimentel's program & started taking hot baths 3-4 weeks it really helped. Their BM's became much firmer. Maybe the bacteria in the Small Intestine don't like the heat??? Please don't over due it...you only need about 15 minutes at the time.


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## 20786

Hi, new to the forum but have had SIBO for 13 years. It was diagnosed in April this year. I just convinced my Dr. to prescribe Neomyacin today. Xifaxin helped alot. Can't wait to try the Neomyacin. I'm right there with you. Good Luck!


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## kimber

Hello everyone, I was so hesitant to post my SIBO story because I didn't want to be a rambler and post day to day stuff, but I am so glad I did. i am glad that these posts are helping people. That is what I want to happen. I told my husband that if this SIBO thing works and I have been suffereing for 12 years and this is what it was, I will tell the whole world, if I can find help then I would want to share it will every IBS person I could talk to. We are the only ones who really understand what we are all going through. Intuition: I am so sorry to hear that you might not be able to make your Sept 12th appt. That is so disappointing for you, my heart goes out to you. I know what it is like to try to get your doc to talk to pimentel. My doc isn't as opposed to it as yours is, but he is hesitant to, as far as pimentels office. They have been so nice to me, but I do know that they told me the same thing that dr pimentel will only talk to your doctor and not to you, so that is hard. I hope you find a doctor who will listen to you and help you get info from pimentel. If you could drive to New York that would be great, it sounds like Pete's sister is a good doc, maybe she is in driving distance from you. I will be praying that you find a good doctor close by. David: we have a hot tub and I have tried sitting in there for 15-20 minutes and it does calm down my cramping. I also sometimes use a rice sack and heat it in the microwave and place it on my belly and that helps the cramps too. So maybe you're right and the bacteria do not like the heat. Thanks for all the tips you gave me, maybe you could help Intuition with her situation, it really helped me to talk to you on the phone. Like I've been saying the more info that we share with each other the closer we get to getting better. Cynthia: I was emailing Pete this morning and he had asked me if I had heard of the Vivonex diet and I told him that your son tried that, but it didn't help him. Can you tell us what that diet was like, and would you recommend it to others to try? Thanks Cynthia!!Ok well I hope everyone has a great weekend. I am going to try to. Take careBlessings,Kimberkmramsey02###yahoo.com


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## kimber

photo4x5: I am glad the rafiximin helped you. Please keep us posted on how the neomycin helps you. Thanks,Kimber


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## cynthia

Pete,First of all, where is your sister and what kind of dr is she? Secondly, my son did the Vivonex diet a couple of weeks ago. Initially I thought it didn't work at all but once he got his strength back (he only ate 900 - 1200 calories per day and the vivonex just doesn't have great nutrients) he was actually better than when he started. His SIBO is still there but, as I told Kimber, I think it takes months to overcome this thing with antibiotics and other treatments. If you (or anyone) wants more detail about the vivonex experience, feel free to e-mail me at cynsuttles###yahoo.com.


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## Pete

Cynthia,My sis is an OBGYN. I do my own research and she trust me enough to prescribe what I ask for.Feel better


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## David LA

Intuition- I found this point you made very interesting: "Quite early in bacterial overgrowth of the small intestine, the normal absorption of vitamin B12 is disturbed. There is considerable evidence that B12, is poorly absorbed when microbes multiplying within the small intestine prevent uptake by the ileum."I know a number of people who have gone for B-12 Shots. They didn't have much success taking them orally for some reason. After several weeks they noticed feeling calmer, less digestive pain and they all seem to have gained weight.


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## kimber

Hello everyone, Well I have a few things to update you on. I will start with some good news. This past Saturday I was able to go see Tim McGraw and Faith Hill in concert. I bought the tickets in March, and was hoping by August I would feel well enough to go. Well August sure got here fast. On Saturday morning I did not think I would be able to make it. The concert location is 1 1/2 hrs from my house, and the drive in itself was very worriesome. Anyway, Saturday morning was awful, I had a bad tummy ache, not a lot of bad cramping, but just very uncomfortable feeling. I also had a lot of diarrhea, I was so disappointed. I told my husband we better find some one to take our tickets. I then went and sat outside on the back deck, feeling sorry for myself, and then I realized I was not going to let this IBS win all the time. I am not a concert goer normally, but I love Tim and Faith, and plus I NEVER leave the house for anything fun, so if I had to tape a plastic bag to my bum, I was going to that concert. I sat outside and prayed A LOT. I prayed that the Lord would carry me through the day and let me go to the concert with a good tummy. I then tried to relax,and I normally never take anti diarrheals anymore because they make me feel worse a few days later, but I decided to try to take some Pepto Bismol so I took 2 doses of that, and I listened to the IBS Audio program, and as it was getting closer and closer to leaving, I kept praying and taking deep breaths. Anyway, right before we left I felt and anxiety attack coming on, but I remembered the golden light on the IBS Audio program, and tried to imagine my self standing in it. I just got in the car and left. On the way down I made my poor hubby listen to relaxing ocean waves cd's, but by the grace of God we somehow made it to the concert. I felt off and on uncomfortableness in my belly through the concert, but I made it. It was AMAZING, I thought this is how life should be, I should be able to go out and enjoy life. I was so thankful that God helped me to make it to the concert, and back home safely. So that was some good news, now for some bad news. I am SO FRUSTERATED at my doctor. As you all know I was counting on him talking to Dr Pimentel on Monday. Well he never called him and today, surprise surprise my doctor is off again. And Dr Pimentel leaves tomorrow for vacation until Sept 7th. I am so pissed off at my doctor. He gave me his word that he would call dr pimentel as soon as my doc got back from vacation (this past monday). He knew that dr pimentel was leaving on wed for his vacation, I called my docs office a few times yesterday, and the office staff was really annoyed with me, but I feel like screaming at them and telling them that this is my life they are screwing with. I have an appt with my doc on Thursday and he is going to get a piece of my mind, and then I think I am going to change local GI's. I haven't done that up until this point because I've been with my GI for 12 years and he knows my case inside and out, and at all of my recent appt's I have been clearly asking him if he was willing to work with dr pimentel and every time he said sure no problem, that is fine with me. So I took him at his word, and now look what happens. This isn't the first time he hasn't followed through like he said he would. So I am going to try to find another local GI who would be willing to work with dr pimentel over the phone. I am hoping to be able to see pimentel at some point, but until that happens I need a local doc who will be willing to help me get info from pimentel long distance. I woke up this morning with another bad tummy ache, and sometimes I think I just can't take one more day of this. I am so frusterated, especially now since I know I have SIBO. For years I never knew what was causing these problems, and even if SIBO isn't causing all of them atleast I know I have SIBO, and now that I know that it makes me a whole lot less patient because I want to get rid of the bacteria as soon as possible, and when the docs put you off for weeks and months at a time, it is so frusterating. So there it is, I just had to vent that all out. I guess I will have to wait until dr pimentel gets back now before I can find out what antibiotics to try next. I will keep you posted when I find out more. Thanks for the support. I try not to let it get me down, but when I have these tummy aches every day, it is so hard. I do have hope because I know my life is in God's hands and there is no place better to be, I know he will lead me to the right place to be cured.Blessings,Kimber


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## 20070

Hi Kimber,Your SIBO stories are simular to mine. I too, tested postive for SIBO about 3 weeks ago. My GI prescribes "Cipro" for 14 days. I felt good the first week or so, but by the time week two rolled around the side effects really got to me







I stuck it out though and finished the antibiotics. I started immediately on probiotics and L-Glutamine capsules, and after about a week or so I feel really good. Only a couple of small bouts of D, when I slipped and my diet with some trigger foods







I highly suggest you start taking some probiotics (PB8 is a good one!), as the antibiotics tend to kill off the healthy bacteria as well as the bad. As we know, it's the healthy bacteria that we msot definately need for optimal digestion. Hope this helps!I truly believe there are allot of people dianosed with IBS that have SIBO. It's worth taking the breath tests to find out!!!


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## kimber

Hello everyone,getoutside: I am glad to hear that after getting through some rough spots with the medication, that you are now feeling better. I too think that a lot of people with IBS have SIBO and just don't know it. Thanks for the tip on probiotics I have taken them for a while now, but recently stopped while taking the rafiximin as per doctor pimentel's suggestion while on the antibiotic. I hope you continue to see progress.Intuition: You poor thing. I am so sorry to hear you are having such a hard time. I TOTALLY understand what you are going through. I can't believe your docs office. I myself was crying to my family practioner this morning telling him all that has been happening with the GI doc, I felt so bad breaking down in his office, but I am so frusterated. I just cried to him and told him that I need someone to just help me. He was very nice, but he too doesn't know where to go from here. So I have the appt with my GI doc tomorrow and he is going to get an ear full from me. This is my life these people are screwing with, and I have had it. I wanted to tell you that when I said dr pimentel will be on vacation until the 7th of sept, I said vacation, but he is actually just out of the office, I think the staff told me it was for conferences or something like that. SO have some hope that I'm sure if he is away for work related stuff he will probably check his email, he just won't be seeing patients in his office. So maybe he will be able to get back to your doctor by the Aug 28th appt. I will be keeping my fingers crossed for you and sending up a few prayers as well. I am sad to hear that you are having suicide thoughts, I know what that is like to feel so hopeless, but somehow I keep believing that we will find a cure one day. I pray for God to give me strength to get through each day. Hang in there, we will get there, I just know it. I'll let you know how my appt goes tomorrow. Blessings,Kimber


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## Kathleen M.

One problem is that what happens in a test tube may not in any way replicate what happens in a body.One thing with Garlic, what concentration of garlic was needed in the test tube to kill bacteria? Is this a concentration of garlic that you could ever get into a human being without harming them (sometimes you'd have to consume so much of something your stomach would burst first even if there were no toxic side effects).Secondly do the pH or other chemical conditions in the test tube in anyway replicate the conditions in the gut, or the change of conditions in the gut. Does any active compound in there survive going through a really acidic conditions of the stomach and the subsequent neutralization so it would still be active in the small intestine.Thirdly, does the stuff work when there are all the other stuff that is in your small intestine from the break down of food. The active ingredient may be more likely to bind a sugar or an aminio acid floating free than to the bacterial cell well to do something to the bacteria.These are some of the reasons I routinely harp on the idea that just because something looks really really good in test tube you can't assume it does the exact same thing in you.Test tubes are very controlled conditions and you can manipulate those conditions to get a maximal effect. These controlled and sometimes manipulated conditions may not be anything that would be found in a body.Animal studies are at least a bit better because you are talking concentrations that didn't kill the critter, conditions found inside a living being, etc.In vivo (in living things) is always better thn In vitro (in a test tube) when you are trying to guess if something will work in a person. It is one of the things you need to look at when you try to determine if a piece of research means something relavant to you heathwise.Lastly even if it actually kills bacteria in an actual person. Does it kill the right ones, Does it kill enough of them to make a difference. Is this something that humans have eaten for thousands of years and what lives in us tends to be things that tolerate the diet we eat. What dose do you really need to get an effect. and lastly Did they make up the testimonials, are they from people that would have gotten well anyway, how good is the doctor at manipulating the placebo effect. You can't overlook that. In clinical trials different doctors have different placebo cure rates. Buying something off the shelf in hope it will work is different from having a person spend a lot of time with you going over your medical history and being 100% sure that they know exactly what is wrong with you and that this treatment will cure you. There are so many things we can cure ourselves of if we get the right social stimuli.K.


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## cynthia

Intuition,I too don't understand why natural antibiotics aren't more effective for my son. I've read studies using people (not in test tubes) where they've found the peppermint worked better at killing SIBO than antibiotics (although rifaximin was not one of the antibiotics). But we've tried everything we could think of (peppermint, oregano, garlic, etc.) and the bacteria is still there.


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## Kathleen M.

Are you basing the bacteria are still there on symptoms (which for SIBO are notoriously unreliable, they see patients at the clinic I go to that they would bet big money have SIBO that do not have it at all when they do the tests) or on actual medical tests before and after to measure what is really going on in there.Not all IBS is SIBO, after all.K.Edit to add. I did check medline, but only found one case report on peppermint and SIBO (where they at least tested for SIBO) a single case study isn't always the best thing to base a whole theory on. You really want a big study with a lot of controls before you can really get a good feel for the likelyhood of something working. EVEN THEN nothing ever works in 100% of patients every single treatment fails for someone. Every.One. You can't know anything will work for you unless you try it and you have to expect that once in awhile you will be in the minority of patients that it does nothing for. (I'm that way with antihistamines, I'm glad they now have some other approaches to allergy control because none f the antihistamines ever works for me. I think my histamine receptors are screwy)


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## eric

Its not clear IBS is SIBO period.At thre moment its pure speculation and a theory.It is a major controversial issues and many IBS researchers are in disagreement.I believe its important to understand the why its so controversial.The micro-flora of the small bowel in health and disease.http://ibsgroup.org/groupee/forums/a/tpc/f...261/m/821102152SIBO (small intestinal bacterial overgrowth) specific http://ibsgroup.org/groupee/forums/a/tpc/f...261/m/140102081IBS may cause motility issues leading to SIBO.Also people without IBS can have SIBO.


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## kimber

Hi everyone,I just wanted to let you know that I met with my GI doc yesterday, and I know I was planning to give him a piece of my mind for not contacting pimentel, but I told my mom that after my visit with my Family doc the day before, where my family doc said he would never have put me on the rafiximin in the first place since he doesn't know about it. I told my mom with my GI doc, I don't really want to go in there and "cut my nose to spite my face", as they say. Even if my GI doc is frusterating he has been willing to try the rafiximin so if I steam off at him and then have to find another GI doc they might think like the family doc and not give me rafiximin again, so anyway I went to the appt and my GI told me that he tried to call pimentel, but never heard back, he said he then called the next day again and spoke to the asst who said the dr pimentel would at this point recommend me doing the liquid diet, the vivonex diet. My GI didn't agree with this since I am a skinny little thing he didn't want me to lose any wieght with this liquid diet. I am not so sure he called pimentel's office only because I too kept calling pimentel's office to see if my doc had called in yet, and the two girls I talked to in the office said they were waiting for his call, but he still hadn't called in. So I don't know what to believe, but anyway my GI doc said he doesn't think we need pimentel to tell us how to get rid of the bacteria. He said now that we know I have SIBO there are a lot of treatment options we can try on our own. He then asked where I would like to proceed. I told him that I had read on these IBS boards that maybe we aren't using the rafiximin long enough to kill all the bacteria. So I told him I would like to first try the rafiximin for 3 months and see if the long term use helps me out. He said he felt rafiximin was safe enough to do that so he agreed to that. He wrote me a script for the 3 months supply at 1200mg a day. My only problem with that now is I am praying my insurance will cover it. My doc said it will be hard to get them to cover it, but he will try. I'll see if he really tries. If the insurance doesn't cover it then I probably can't use it because a 3 month supply would be soooooo expensive, but we'll see what happens. So my GI doc said we could try the long term rafiximin use and see how I feel in 3 months, and take another breath test, and if I still have the SIBO he said he would then try me on Cipro and Flagyl in a combination. I've heard very little about those antibiotics, but he said he thinks they would work great too. So atleast there are a few options in front of me. He said that once the bacteria is eradicated his only concern is that will it come back. He thinks I have a motility problem too. He suggested after the SIBO is treated, that I take a very small dose of zelnorm at night to get my motility back on track. I am nervous about that since I have the D side of things and I know zelnorm is for C. My doc said he understands that, but he said that most of the time people with D have too fast moving motility, and people with C have too slow moving motility, but he said there are alot of people who actually have D with slow motility, and the reason is that the slow motility causes a build up of acid that gets sits too long in the small intestine and then gets into the colon and once the bile hits the colon it caused D, so he said my speeding up the motility will help the D too. I'm just saying what my doc said I don't know if it is true or not, but I am skeptical to take the zelnorm, but I'm not at that point yet anyway so I'll cross that bridge when I get to it. Another thing my GI told me is that he knows a doctor at UC Davis Hosptial that did studies on SIBO in another group of patients a few years ago and he used believe it or not Pepto Bismol to eradicate the SIBO in those patients. He said this doc is a good friend of his, and he said that the studies in his trial patients came back that the SIBO was gone after the use of regular Pepto Bismol. He said the reason the world doesn't know about it is because there is no money in it. He then told me that Pimentel uses rafiximin because the company who makes rafiximin is most likely paying a lot of money into pimentels research in turn for pimentel recommending their drug to cure the SIBO. My doc says that is how the world of medicine works. He said that the rafiximin might work great, but the reason dr pimentel is so set on it is because that company is funding his research. He said that there is no money in Pepto Bismol with funding research so it is not known about. He said that is why he wants us to try not only the rafiximin but other antibiotics or pepto because there are other antibiotics that could work just as great if not better then the rafiximin. He told me the only thing with taking the pepto is that it will turn your stool BLACK, very black, and also he said your tongue can turn black. He said it is a harmless chemical reaction and it will go away. He said if it happens then to make sure you brush your tongue gently each day. And he said again that it was completely harmless side effect. I asked him the dosing for the Pepto theory and he said he couldn't remember what his doctor friend used,but he was pretty sure it was to simply take the dose recommended on the package 2-3 times a day in either the chewables or the liquid form. So there you have it, I did learn a lot at yesterdays appt. I don't know if the pepto thing works, but for those of you waiting to see a doc or have run out of options, it won't hurt to try the pepto. He had mentioned it to me at an earlier appt, but did not go into detail until yesterday, but I remembered his prior mention of it so I actually tried taking pepto the day of the concert last saturday. I only took 2 doses, and I made it to the concert. With only those 2 doses I didn't have time to see any improvement with the SIBO, but on Sunday he was right my stool was black, but I did not get black on my tongue. I just thought I would share that with you all. I had a really bad tummy ache the last 2 nights and I get so frusterated with this, but I am hoping we can find something soon to help us. Blessings,Kimber


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## kimber

Sorry I totally forgot to give my take on the natural antibiotics. I too have tried a lot of the natural stuff, and found no relief from them, but at my family doc appt the other day he recommended I see a naturopath doctor in our area he said she has helped a lot of people. I took her card, but I haven't called yet because I spoke to someone else who does something similiar lately. My friend knows a lady in our area who does naturopath/homeopathic stuff and has been doing it for 15 years. So I made an appt with her a few weeks ago just to see what she said. She was very nice and she did her thing, however they know what you need thing, and to make a long story short she said that she found a few things. She said she found that I have worms(parasites), but I have been tested for these and they were negative, but she said that sometimes the tests miss them. So she recommended worm wood for that. She also said she found bacteria buildup in my small intestine. That I was surprised about because I made a point to only say that I had IBS, because I wanted her to tell me what she found and not the other way around. So for the bacterial buildup as she called it she suggested Nutrimere, and also she said that my liver and small intestine needed some Milk thistle. The last thing she told me was that my body was not getting any nutrients from the food I was taking in, even though the food itself was good she said with the bacteria/worm stuff that my body was not getting the nutrients so she said I needed to get some food enzymes. Not over the counter ones she suggested a way to make a natural one at home. So those were her suggestions. She said she was reading my body and not going by what is suppose to help, she was reading what my specific body was telling her that I need. Anyway, she said not to try these things while on the antibiotics because then I won't know what worked, so I have her recommedations tucked away and I will try them if nothing else works. I would try anything. I don't know if it would help, but it is worth a try. I did ask her about garlic because I have heard that garlic helps intestinal aligments, but she said my specific body was not wanting garlic to help it. Alrighty then!! So anyway we'll see!! Blessings,Kimber


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## betterthroughscience

> quote:Another thing my GI told me is that he knows a doctor at UC Davis Hosptial that did studies on SIBO in another group of patients a few years ago and he used believe it or not Pepto Bismol to eradicate the SIBO in those patients. He said this doc is a good friend of his, and he said that the studies in his trial patients came back that the SIBO was gone after the use of regular Pepto Bismol. He said the reason the world doesn't know about it is because there is no money in it. He then told me that Pimentel uses rafiximin because the company who makes rafiximin is most likely paying a lot of money into pimentels research in turn for pimentel recommending their drug to cure the SIBO. My doc says that is how the world of medicine works. He said that the rafiximin might work great, but the reason dr pimentel is so set on it is because that company is funding his research. He said that there is no money in Pepto Bismol with funding research so it is not known about. He said that is why he wants us to try not only the rafiximin but other antibiotics or pepto because there are other antibiotics that could work just as great if not better then the rafiximin.


This is one of the biggest challenges in medicine today. Our government used to fund a wide array of scientific research, but politics and business have directed much of the medical research into specific, high profit products. The insurance companies control, through what they agree to reimburse, what doctors can do. They label anything unusual as experimental until there is an overwhelming body of research - which there never will be for solutions that are hard to monetize.In any case, Kimber, remember that high dose antibiotics can cause lots of problems and that you should probably get tested to see how your gut ecosystem is progressing as you go on and off antibiotics. Doing so regularly will not be extremely cheap, and probably will not be covered by your insurance company, but if you don't test you can't know.Dr. Gordon has been doing research on the ecology of the human gut and reports that there are literally trillions of bacteria living there, contributing in various ways to our health or illness. Make you think about using antibiotics: http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum


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## flux

> quote:"Quite early in bacterial overgrowth of the small intestine, the normal absorption of vitamin B12 is disturbed. There is considerable evidence that B12, is poorly absorbed when microbes multiplying within the small intestine prevent uptake by the ileum."


But all IBSers absorb B12 fine, so what does that mean, that none of them have SIBO?


> quote:Our government used to fund a wide array of scientific research, but politics and business have directed much of the medical research into specific, high profit products.


I assume this is not referring to any government on earth. It certainly doesn't sound like it.


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## kimber

Hello all,Thank you for all the info that came in over the weekend. better through science: Thanks for the tip on checking Dr gordon's site. Also for the heads up on taking antibiotics long term. I too am a little nervous to take the rafiximin for 3 months straight, but i did ask my GI specifically if he thought it would do any harm, and he said it is such a safe antibiotic that he thought it would be fine. I'm still not sure if the insurance will cover it. I appreciate your imput it's always good to be cautious.intuition: Thanks for the heads up on the cost with out insurance. I am waiting to hear from the docs office to see if the insurance will cover it or not,but atleast I have an idea of what I'll be dealing with if it doesn't get covered. Sorry to hear the Pepto thing didn't work for you. Like I said it was just a suggestion by my doc. I have not tried it long term either, but like you said if it was going to work it would have worked for you since you took it long term. Oh well worth a try. I too am most hopeful about rafiximin even if my doc is right and the sponsor thing is true. I agree with you that since the rafiximin stays in the gut, it should be most effective, but I did feel better to know that if the rafiximin doesn't work, my doc seems to think that there are other antibiotics that could be just as good with the exception of staying in the gut. I am still on the cancelation list at pimentel's and am still planning to try to get in to see him too, I would like his opinion about all of this too.


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## Pete

Kimber,Take the rifaximin. Don't worry about it. I have taken it for 6-9 months. I know people with Crohns disease that take it for years. At first they got it from Mexico and now it is legal in the US. It is not absorbed in the body. Hell teens take antibiotics that are absorbed for years for clear skin. I wouldn't worry about it. Let us know how you do.Good luck


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## kimber

Pete: Thanks for reminding me that you have been on Rafiximin long term. I know you have been doing well being on it for months now. The part I was a little nervous about was being on such a high dose for 3 months. The 1200 mg daily for 3 months is what I was a little nervous about. Don't get me wrong, I am thrilled to have the opportunity to do this, I am just a little nervous about it, but if my insurance covers it I will definitley do it. If the insurance doesn't cover it, my husband and I will have to see if we can save up the $ to pay for it ourselves. With me not working due to the IBS, he is the only $ support we have. But I will definitley try this route, I was just a little nervous, but you are right a lot of people take antibiotics for long periods of time. I don't know if they are high doses, but other people do it and are fine. It doesn't hurt to try anything at this point. My doc wants to follow up with zelnorm at bed time after these 3 months rafiximin, but I am REALLY hesitant to do that because I have heard of some bad experiences with the zelnorm, I did mention you to my doctor actually and I told him how dr pimentel told your sister that if zelnorm couldn't be tolerated that he recommended a low dose rafiximin for long term use. My doc seemed fine with that, and said we'll see what happens after the 3 months. I don't know how long it will take to get this script filled since the insurance is looking it over as we speak. My doc thinks it could be a few more weeks before we get a yah or nah. Thanks Pete for the encouragement. I'm glad you are doing well on the rafiximin, I will keep you posted on how I do once I get my script filled.Intuition: I hope that your appt with your doc goes well on the 28th, hopefully she will listen to you and your husband this time. I will keep my fingers crossed.


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## Talissa

I took tetracycline ev day for a year in my late teens--to ensure I didn't get acne.







If I could only go back...I'm sure from my readings & my own instincts that this was a large contributor to my current peridontal disease & my susceptibility to getting PI-IBS-D. Lots of courses here & there before finally getting PI-IBS--& specifically, after taking 3 courses of antibiotics in a year. Flagyl was what finally did me in.I really screwed up my intestinal flora balance...My 2 cents.


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## Pete

Kimber,Sounds to me like you have a great doc


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## Kathleen M.

Usually the bugs that are growing in the small intestine in SIBO are the exact same bacterial species everyone always has in their colon or mouths.They aren't usually toxic, so they probably are not destroying your immune system or we all would be dead from the billions of bacteria we all have.Not all bacteria are trying to kill you. Some actually make us work better. If you grow an animal devoid of all bacteria in the colon they are much less healthy than usual.SIBO is a problem with the right bacteria in the wrong place, not toxic bacteria.


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## eric

FYISmall Intestinal Bacterial Overgrowth(SIBO) http://www.medicinenet.com/small_intestina...wth/article.htmIt should be noted in the case of IBS that this is purely speculative. Other IBS research centers have not been able to reproduce Pimentel's research and theory. That is important.There is much controversy surrounding sibo and IBS. "There is a striking similarity between the symptoms of irritable bowel syndrome and SIBO. It has been theorized that SIBO may be responsible for the symptoms of at least some patients with irritable bowel syndrome. The estimates run as high as 50% of patients with irritable bowel syndrome. Support for the SIBO theory of IBS comes from the observation that many patients with irritable bowel syndrome are found to have an abnormal hydrogen breath test, and some patients with irritable bowel syndrome have improvement of their symptoms after treatment with antibiotics, the primary treatment for SIBO. Furthermore, it has been reported that successful treatment of symptoms with antibiotics causes the hydrogen breath test to revert to normal, suggesting that bacteria indeed are causing the symptoms. Although this theory is tantalizing and there is much anecdotal information that supports it, the rigorous scientific studies that are necessary to prove the theory have just begun. Nevertheless, many physicians have already begun to treat patients with irritable bowel syndrome for SIBO. The intriguing issue yet to be elucidated is the reason why individuals who appear normal develop SIBO and IBS. The most popular theory is that patients with irritable bowel syndrome have a subtle abnormality in the function of their intestinal muscles that allows SIBO to occur. "Something to note is people WITHOUT IBS can have SIBO and some people with IBS do not have sibo.


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## kimber

Hello everyone,I found out that my insurance will not cover the rafiximin so my hubby and I are going to have to pay for it. He is taking on side jobs to come up with the $. Bless his heart, he is such a good man, and he is so supportive of me through all of this. So it will be a little while before I fill the presription. Intuition: I know I sent you a Private message, but I just wanted to say again that I am glad your appt went better than you thougt it would. The cycle thing might not be ideal, but it is a start so I am glad about that. Maybe someone on the boards knows of a good GI doc in the US closer to your borders, then your doc could refer you there. That might help. My GI doc thinks it is silly that I am going to pay for the rafiximin, he really thinks I should try his Pepto Bismol theory, but I know you said it didn't help you at all. And I just read your most recent post, I want you to know I have appreciated all of the info that you have shared with us. I hope you stay posting on this site, you have brought us a lot of new info. If you choose not to post again, please feel free to email me directly at kmramsey02###yahoo.com anytime.


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## luckylou

Intuition, please don't refrain from posting, I have been reading your posts with great interest.10 years ago I said to the first Doctor I went to after being diagnosed with IBS that everything I had read on the subject lead me to beleive I have a bacteria in the small bowel. Well nobody wants to agree with that theory, but I think they are wrong. So after every test available, surgery last year to remove part of my colon, bowel re section and fistula repiar, I am worse off now with D than I ever was, and they don't have a clue why I have urgent D 24/7.Have been reading all the posts on SIBO, realize it seems to be quite contraversial, but it makes a lot of sense.I hope you will please keep updating your progress, I am sure I am not the only one interested in the SIBO theory.


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## eric

I don't think you need to stop posting. There are two real conditions IBS and SIBO.They are working if they are related or if someone can have both ect..The research Oon IBS itslef has come a long way recently and they have found different abnormalities then normals. Its very complex.Intuition you should read this thread also.http://ibsgroup.org/groupee/forums/a/tpc/f...261/m/842105352Post infectius IBS is a brain gut axis disorder and so is IBS.In IBS it maybe that the motility of the colon is not functioning right from the IBS and that allows SIBO to occur.But motility plays a role in IBS, but cannot fully explain IBS and pain. They have found moleculur defects in IBS patients now. Mast cells and enterochromaffin cells are very important in IBS.I post what I am posting for people to understand it all better. That is very important.IF you have sibo you want to treat it right.If you have IBS you want to treat that right.


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## eric

FYI"Small bowel bacterial overgrowthToo many bacteria in the upper part of the small intestine may lead to symptoms of bloating, pain, and diarrhea. Symptoms occur immediately after eating because the bacteria in the intestine begin to consume the food in the small intestine before it can be absorbed. *Small bowel bacterial overgrowth is a result of abnormal motility in the small intestine.* "http://www.iffgd.org/GIDisorders/GIAdults.htmlThe above link also shows the many functional gi disorders of which IBS is one of them.what causes the abnormal motility in the small intestines.Also "Classic IBS" mainly effects the large intestine.


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## stinky too

> quote:Intuition


Don't stop posting. You know more about this SIBO/IBS thing than any of the Drs. I have gone to. I am going to see a new (to me) GI this Friday and I want ask him about some of the things I have read on this board.Joycein


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## 19462

Intuition,I hope you change your mind and continue to post. I am so eager to read any and all information provided by you and a few others on here. Your post are always so informative and give me something to think about.Hope to read lots more posts from you on here.Deborah


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## 20777

Hi Kimber! I just discovered this site and I wanted to say hi. It makes me feel better that other people struggle with such a low quality of life like I do, and have for almost 10 years. I have no support and no one understands. Everyone thinks that because tests are normal then you are fine. It's almost like they thimk once the tests come back negative then you are instantly cured and really have nothing wrong with you. I can't take it any more! My own mom even thinks it's "in my head". So I just wanted to say thank you for posting your experiences and thoughts because I am about to show my mom your post and let her see that I have not been making all this up as an excuse to not leave the house or be social because others are going through the same thing.Thanks!


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## stinky too

Welcome to the board Frustrated.I have had this since I was 19 and I am on SS now. I seldom go out of the house anymore altho I did at first. But now everyone knows my name and even my best friends shun me. Even the nurses in the GI's office were making remarks and that made me feel very bad cause you would think they deal w/this and should know that there has yet to be a cure.Not to discourage you but I do believe in time there will be and for those w/D there are some who found help with antibiotics. I ask my DR about that and he knew of it but said I would have to be on them all the time and he would not go that route. I think showing your mom what the rest of us put up with would make a believer out of her.My hubby denied for years that he could smell anything, but now he don't deny it anymore he just won't talk about it either. That is why this board is so helpful.((((((HUGS))))))))))Joycein


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## Janet Robinson

I traveled to Philadphia to have the newest breath test, a norm is 12 I was a 18 it took 5 hours then I was treated with antib's the first week was horrible I had every side effect but then week two I was really good, well then it went right back to all the problems..I take digestive advantage for IBS not sure if it helps, probotics , special soluble fiber and I am in a big flare up, pain constantly, I read somewhere where the antbi's for bacteria only last about 10 weeks I am beginning to believe it, my gi did mention he would re treat with more anti's but I seem to think for what it will all come back again.


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## Nanobug

> quote:I take digestive advantage for IBS


In my opinion, Digestive Advantage is *BAD*! It contains sucralose which is probably feeding the bacteria in the small intestine. If you have SIBO I'd stay away from this supplement.


> quoterobotics


One needs to be careful with this too. Until motility of the small intestine is restored, supplementing with probitocs of any kinbd might be also bad. Are you taking erythromycin or Zelnorm? Recently, I've started to think t5hat 5-HTP, as a precursor to serotonin, might be of help in this department but need to do a little bit more research to get a better understanding.


> quote:special soluble fiber


Hmm, might be bad too. Soluble fibers tend to easily ferment. Citrucel (methylcellulose) appears to be low fermentability but one never knows...


> quote:I read somewhere where the antbi's for bacteria only last about 10 weeks


I think Eric above is right, that "small bowel bacterial overgrowth is a result of abnormal motility in the small intestine." As such, killing the bacteria off is an important step. However, it is absolutely necessary to prevent the bacteria from returning. For this, you need the small intestine to function properly.Personally, for IBS-D, the thing that makes the most difference is the 20g/day of l-glutamine that I take. Glutamine is fundamental for the healing and constant renewal of mucosal tissue in the small intestine. I also take peppermint oil (Pepogest brand, 6 enteric-coated caps/day) which, among other things, acts as a mild bactericide. Another important thing is to take a bunch of different enzymes, to avoid having undigested food reach the bacteria. Besides pancreatin, I take lactase and a bunch is a formula called GasStop.Hope this helps.Nano


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## eric

Janet I will post something for you here soon.Nanobug, I don't think taking 5htp works for what your thinking.also fyi on serotonin and IBS and this is very new.MedGenMed GastroenterologyIBS -- Review and What's NewAmy Foxx-Orenstein, DO, FACG, FACP Medscape General Medicine. 2006;8(3):20. Â©2006 MedscapePosted 07/26/2006"Serotonin SignalingOf the putative mechanisms underlying the pathophysiology of IBS, the strongest evidence points to the role of serotonin in the GI tract. The effect of serotonergic mechanisms in the manifestation of IBS symptoms has led to development of a new drug class for the treatment of IBS patients: the GI serotonergic agents.Normal GI function relies on a properly functioning brain-gut axis, which involves the coordinated interplay of the GI musculature, the CNS, the autonomic nervous system, and the enteric nervous system (ENS). The ENS contains millions of neurons embedded in the wall of the digestive tract and functions, at least in part, independently of the CNS. The size, complexity, and independent function of the ENS has resulted in application of the terms "the second brain" and "the mini-brain."[81] Impaired function or coordination of any of these systems, or the communication between these systems and the GI musculature, can lead to symptoms of dysmotility and altered sensory perception, which are characteristic of IBS and select other GI motility disorders.[82]The neurotransmitter serotonin (5-hydroxytryptamine [5-HT]) is a predominant signaling molecule in the ENS. Most (90% to 95%) of the body's serotonin is found in the gut, and smaller amounts are found in the brain (about 3%) and in platelets (about 2%).[83] In the GI tract, serotonin facilitates communication between the ENS and its effector systems (muscles, secretory endothelium, endocrine cells, and vasculature of the GI tract), thus playing a key role in normal GI tract functioning.[84] In addition, serotonin plays a role in the communication between the ENS and the CNS.In the gut, serotonin is synthesized by and stored in the enterochromaffin cells, which are located within the mucosa of the intestinal wall. When material passes through the lumen and the mucosa is stimulated, enterochromaffin cells release serotonin, which then binds to its receptors (primarily 5-HT1P receptors) on intrinsic primary afferent neurons, initiating peristalsis and secretion. Serotonin also binds to 5-HT4 receptors on interneurons, which augments the transmission of signals to motor neurons, resulting in enhanced peristaltic activity. In transgenic mice lacking 5-HT4 receptors, colonic motility is abnormally slow, confirming the role of these receptors in facilitating normal colonic motility.[85] By binding to 5-HT3 receptors on efferent sensory innervations coming from the vagus and the spinal nerves, serotonin mediates signaling between the ENS and the CNS and, thus, modulates pain perception.To regulate the signaling process, excess serotonin must be removed; this is accomplished by the SERT molecule expressed by intestinal epithelial cells.[86] Human studies have shown that defects in serotonin signaling contribute to the pathophysiology of IBS and, potentially, other GI motility disorders. In a recent study by Coates and colleagues,[87] biopsy specimens from patients with IBS showed significantly lower mucosal serotonin concentrations than those from healthy controls, potentially the result of lower mRNA levels for tryptophan hydroxylase (the rate-limiting enzyme in serotonin synthesis), which were also significantly lower in patients with inflammatory bowel disease.[87] There was no significant difference in the number of enterochromaffin cells or in the capacity of these cells to release serotonin under stimulated conditions. In another study, higher serotonin levels were observed in mucosal biopsy samples from patients with IBS with constipation (IBS-C) than in patients with IBS-D or in healthy volunteers.[88]Serotonin levels may also be affected by altering the amount or function of SERT. The study by Coates and colleagues[87] showed a significant decrease in the level of SERT mRNA and SERT protein expressed in the intestinal epithelial cells of IBS patients compared with that of healthy volunteers. In another study,[89] SERT expression and binding capacity in platelets were decreased in women with IBS-D compared with expression and binding capacity in healthy controls. Furthermore, Chen and colleagues[90] showed that mice with a SERT gene deletion had altered colonic motility. It is interesting to note that the mice thrived in laboratory housing conditions, indicating that other transporters could compensate for the lack of SERT. Additional studies have focused on SERT polymorphisms. Yeo and colleagues[91] showed an association between patients with IBS-D and the homozygous short polymorphism of the SERT gene promoter. This mutation results in lower levels of SERT gene transcription and reduced amounts of SERT protein available for reuptake of serotonin. In addition, Camilleri and colleagues[92] showed a possible link between the long promoter polymorphism and patient response to therapy.Thus, a substantially large body of work shows that normal gut physiology is predicated on the interplay between the GI musculature and the ENS, autonomic nervous system, and CNS. One of the central mediators of this complex interplay is the neurotransmitter serotonin. Impairment or imbalance in serotonergic signaling, which can affect GI motility, secretion, and visceral sensitivity, may be affected by defects or deficiencies in serotonin production, specific serotonin receptors, or proteins such as SERT. These changes can manifest in symptoms associated with IBS, including abdominal pain, altered bowel habits (constipation, diarrhea, or alternation between these 2 states), and bloating."http://www.medscape.com/viewarticle/532089_print


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## kimber

Hello everyone,It has been a while since I posted an update. I have been checking in every now and then reading posts, but I had to stop checking everyday, for a while it was consuming me to check this site for updates, and I have found that taking a breather actually helped me a little bit to think of something other than my IBS. Imagine that!!! Anyway, the last time I posted I was saving up some $ to buy the Rafiximin. I still have not filled that prescription, because my doc now wants me to wait to fill it until I see Dr Pimentel in January. The reason is that since my last post the doc has run a few more tests. I did another series of stool test, oh and those are so much fun!! Most came back normal, just like everything else, but one actually came back showing something. It was the Lactoferrin stool test and it came back positive showing white blood cells in my stool. This really stumped my GI because he has done a colonoscopy and upper endoscopy and didn't find any inflammation, so this made him want to do some more tests. Also I forgot to mention that I have had a new symptom this year. I have had this IBS-D for 12 years now and I have never lost weight with it, even though I have had a ton of D, I have always stayed about the same weight. Now I've always been a little bitty thing, I have always weighed about 108-110 lbs and I am 5'3 in height. Last winter I gained a little wieght not much but at my yearly physical I weighed 114 lbs at the office. Now since about March I have started losing weight unbelievably. I now weigh only 92 lbs and have lost about 20 lbs this year. That is A LOT for a little bitty thing like me. Like I said this is new for me, even though I've been dealing with IBS for so long my weight has not changed like this before. So that leads me to the next tests the doc wanted to run. He had me to a Fecal Fat test to see if I absorb the right amount of fat. That was not a fun test, I had to eat a lot of fat for 6 days and collect everything I pooped out for the last 3 days of the test. That was loads of fun!! Anyway he also wanted me to do the new capsule endoscopy test so 2 weeks ago I did that procedure. I had to drink the big gunk clean out stuff the day before, oh how I love that prep, and then the next day I went to his office at 7:30am and they hooked me up to all these sensor stickers, they attached them all over my stomach area, and then they had me wear a tool belt looking thing with the suspender straps and they packed the pockets of the belt with the cords from the sensors and battery packs. I looked like I had a bomb strapped to me. Then I had to swallow a pill capsule that had a video camera in it. It was a large pill, but it went down fine. Then I was able to leave the office, but i had to return 8 hrs later. I went to my sister's for the day, she lives a few mintues from the hospital, I live 45min away. So at the end of the 8 hrs I returned to the office and they unhooked my equipment and sent me on my way, they said to look for the pill to come out in the toilet and to call them when I saw it. They said to flush it down sense the sensors taped everything that they needed. I did see it the next morning, and that was a strange feeling to actually see the whole pill in the toilet knowing I swallowed it the day before, talk about full circle moments. It was strange knowing that I had a camera inside of me video taping it's journey. So yesterday i got the results from that, and shocker of all shockers it came back normal. So my doc is so stumped that my lactoferrin stool tests showed positive for white blood cells. He is not sure what to do now. He says to hold off on the rafiximin until January, and see what Pimentel thinks. In the mean time he said my Fecal fat test came back normal as well. So he doesn't know why I am losing weight (And yes I am eating, I know how important that is, that was my docs first question) He sent me this morning for another blood test to see if I have Addison's disease, he says it is very rare, but worth a shot. Also he wants to try me on a steroid treatment while I am waiting to see Pimentel. He said patients who have Chrones disease do steriod treaments but they are heavy doses, and he wouldn't do that to me, but he said that this steroid is very low dose and like Rafiximin is not absorbed into the bloodstream it will only work in my intestine area. It is called Entocort EC. He said it has very low side effects most people don't know they are on it, but because the white blood cells are present in my stool he says that shows signs of inflammation somewhere he just can't find where, so this steroid might help me he thinks. I'm not sure if I want to put the steroids in my body if he's not even sure if they will help or if I need them. So that is where I am at now. My goodness it has been a long year. I am hoping to make it through the holidays feeling ok. I have talked with a naturopath/homeopathic doc too and she has her own natural stuff she wants me to try, but I am so confused right now as to what way to go and what to try. Last night I met with some people from my church and they prayed over me. And actually that was the most peace I have felt in a long time. I am a strong believer that God has a plan for my life and I just know that he is with me through all of this. My life is in his hands and even though I don't like my situation, I know he will take care of me,and give me strength to keep getting through this. I keep praying that he will give the doctors some wisdom to find what is wrong so they can help me and so many others who have this IBS Stuff. Anyway I still have Hope, and Faith and that gets me though a lot of this stuff. So I will keep you posted on me, I just can't get back into checking everyday, I need to step back sometimes so my mind isn't consumed with this 24 hrs a day. If any of you want to ask me questions I will check in every few days here on the boards or you can email me directly kmramsey02###yahoo.com I do check my email every day. Frusterated1: I am so glad that you found these boards. They have really helped me a lot over the years too. My parents still at times think it is in my head, but they understand now more than before, I think it is just that if you don't live with it yourself it is hard to really understand what it is like. Don't lose hope, we'll all get through this. Feel free to email me anytime







Intution: I have been thinking about you lately and wondering how you have been feeling and what's been going on with your doc appt's. And to answer your question about the birth control. I am no longer on any. I've been off them for about 2 years now. Thanks to all!Blessings,Kimber


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## Popp

Kimber,thanks so much for keeping us updated.


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## kimber

Hello everyone,I'm hope that my updates aren't too long and boring, but I appreciate that you read them and that we all share info here. Intuition: As far as the birth control. I was on Ortho Cyclen for about 4 years or so, and then went off of it. I have not been on any type of hormonal birth control in 2 years including IUD's. I am added hormone free, YEAH!! I always hated how my birth control pills made me feel. Hope that helps. And also I'm glad to hear that you have been finding new info to research. Hopefully your B-12 trial will help. Have a good Thanksgiving everyoneKimber


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## 17190

Hi Kimber,I noticed that you are also from N. California. I also live in N. California, about 35 miles from SF, to be exact. I saw an article in this weeks Parade about rifaximin and actually wrote another post asking about it. I didn't realize that this thread existed. I was going to ask my doctor about it. I don't know if I am a candidate or not. I have had IBS 40+ years without finding much to help me. I have just learned to live with it. I wonder if the rifaximin will help or not. I have been disappointed before from treatments that I had high hopes about. Is this just another one of those?By the way, Happy Thanksgiving to all USAer's


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## David LA

Hi Kimber- Thanks for posting! I hope everything goes well when you see Dr. Pimentel.FYI...Dr. Pimentel is planning on doing anotherbook next year which is going to focus more on the diet side. In addition, he mentioned that there will be some new studies that will be coming out soon. Take Care!!


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## 23593

Hi Kimber, did the meds work? I suspect that I also may have SIBOthanks!


> quote:Originally posted by kimber:Hello I also posted this message on the IBS forum, but I wanted to post it here as well. I have been posting on this site off and on for a few years now. I have had IBS D for about 12 years now,and it has taken over my life. I was able to work at one time, but not any more. I am a 26 year old female and I was married 4 years ago. I have had ALL the testing and like most of you they have found nothing. My IBS has had it's ups and downs over the years, but lately it has been at it's all time worst. I very very rarely even leave the house. I am always having stomach aches, but for me what's worse than the D is the cramping, the cramping is horrible. I hate living with an uncomfortable feeling in my bowels everyday. THere has got to be a better way to live then this. I know that God has a better future for me, I can't imagine living like this for the rest of my life. I fell like my life is passing me by, each day I wake up hoping to make it to tomorrow with not a lot of cramping, and then the next day the same thing. I hate wishing my days away, I want to LIVE my life and ENJOY LIVING it. Anyway I'm rambling now you all know what that feels like, but recently I read Dr. Pimentel's new book and I was really interested in the SIBO theory. So initially I went into my GI and talked it over with him and he agreed to try me on the rafiximin, and I didn't notice much change, but then I realized that I wasn't on the right dose. My doc had me on 400 mg a day, and Dr. Pimentel gives his patients 1200 mg a day for 10 days. So I stopped the antibiotics after 8 days or so and talked things over with my doctor. I told him that I wanted to have the breath test done so I knew if I even had the SIBO before I went the route of antibiotics. He didn't know any place near our town that offered the test, but when I went home I did my own research. I have found that even if the docs are nice and caring, they don't understand what it is like to live with this disorder and I realized I have to be my own advocate if I want to find help, so I found that I could have the test sent to my docs office from Quintron. So my doc ordered 2 at home tests and they sent them to him within a week. I had to wait 3 weeks after taking the previous low dose antibiotics to take the breath test. I did the breath test this past Monday at my own home. That was nice to be able to be at home. It is fairly easy to do yourself, you just have to follow the instruction, and also Quintron sends their 800 number that you can call anytime with questions and they answer really quickly. So the test consists of ten test tubes and a breath bag/container, and some labels and then the lactulose powder. It is a small amount of lactulose powder, and you mix it with 8 oz of water to drink it. First though you have to take a breath sample before you drink the lactulose, it is simple to take the samples. you breath into the container and the bag fills with your breath, then out of the side of the container there is a place to insert a test tube, so as you exhale your breath you insert a test tube and the air fills into the tube just like it does the bag and then you pull out the tube and set it aside. It seals itelf once you pull it out. So then after the intial breath sample you drink the solution, it tastes like sugar water, and then every 20 minutes you give another breath sample, you continue this for 3 hours so you wind up with 10 samples total. Then you place the labels on the samples and place the samples back into the box with the provided bubble wrap and mail it to the lab, they give you a prepaid box with the address label already on it. So the test wasn't so bad, after I drank the solution about 1 hour later my tummy started gurgling and I was gassy and then I had about to trips of D, but it wasn't too bad and then I was mostly gassy but not real bad for the rest of the afternoon. So my samples were mailed to the lab and they tested for methane and hydrogen levels. The results came back today and I tested 0% for methane which meant it was negative and then for the hydrogen I tested positive for the SIBO with the hydrogen level. Now the lab and my doc went over the results with me. They said that they look for a 20% increase in hydrogen to determine if you have SIBO, if you have 20% then it is postive, NOW MY TEST came back with a 70% increase in hydrogen. So they said I have a extremley high level of SIBO. So to me this is atleast some good news. I have had sooooo many tests over the years all coming back normal, this is the first time they have found physical evidence of something wrong. So now my doc and I are going to follow Dr. Pimentels protocol for trying to get rid of this. I know some people have had success while others have not. I think it is sooooo important for people to get tested for the SIBO with the breath test FIRST before you start any treatments. That way you can get a baseline to see if you even have SIBO and then later if the antibiotics helped to get rid of all of it or atleast some of it. If you don't get tested first, you are guessing, well that is how I felt. I wanted people to know that you can have your doc order the breath test kits from Quintron so you can do them at home. The number for Quintron is 1 800 542-4448. They are really helpful there. So that is where I am at, I don't know if this will work, but atleast now I know for sure that I do have the SIBO. I hope the antibiotics will work, I start them on Monday I will take the Rafiximin 1200 mg a day for 10 days and we'll see what happens. Has anyone else done this protocol for IBS D and had any relief or help from the symptoms. I have heard that some people have great results and some have the SIBO come back after the antibiotics are done,if that happens than I guess the next question is why does it grow back, what is causing the SIBO to come back in some people and not in others. Any info that on this or any experiences would be great to hear about. I have also started the IBS Audio Program about 2 weeks ago, and I feel more relaxed, but so far still have the tummy aches, but I know I'm still early in trying them, and I'll keep listening even while I'm trying to get rid of the SIBO. So again if anyone else has any info to offer or stories to share I would love to hear any success or other stories. Thank you for reading this and I will keep you posted on my progress. Blessings, Kimber


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## kimber

Hello everyone,I hope you all had a good Thanksgiving. I did. Nerfmom: I am from Northern Ca but up further than you are. I am about 45 minutes East of Sacramento. I'm actually right smack in the middle of Sacramento and South Lake Tahoe. I hope that the rafiximin works for you. So far the initial dose has not worked for me, but I am thinking a longer period of it might work. I am waiting to see Dr Pimentel in January and see what he recommends. Since you are in CA I would recommend making an appt with him. He is in Los Angeles at Cedar Sinai hospital. I think he is the most up to date on newest info about IBS stuff. I too have been disappointed with many different treatment options over these 12 years, but I remain hopeful that someday I will find something to help me. Good luck to you and I will keep you posted on my trip to see Pimentel in Jan.David: Thanks for the info on Pimentel. I see him in January so I am hoping he will have something that can help me. I will be curious to read his new book next year.3rdinline: So far the rafiximin has not helped me, but it has helped other people according to Dr. Pimentel in his book. You can read my log of experiences throughout this long post topic.


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## kimber

Hello everyone,WELL I FINALLY GOT IN TO SEE DR. PIMENTEL!!I have an update, but since this thread is getting so long, we're up to 7 pages now, I'm going to start a new thread continuing this one. I'll post the update there!Kimber


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