# I saw Dr Pimentel, continuation from post" I tested positive for SIBO after 12years I



## kimber

Hello everyone,I wanted to start a new post thread for this since the other post, "I tested positive for SIBO after 12 yrs IBS-D, here is my story and questions?" was up to 7 pages long. So if you are reading this and are wondering what's going on feel free to read the other post topic as well. Anyway, I wanted to update everyone. I had an appt with Dr pimentel in January, but last monday I got a call from his office saying there was a cancelation for tuesday the next day at 3 pm and if I wanted the appt I could have it. So I called my husband who has been working lately at Sac International Airport doing Electrical work, and I asked if he could leave work. It was a challenge getting him some time off during the holiday season at the airport, but they let him go and we drove down to LA monday night. We left at 8:30pm and arrived in LA at 3:30am, we live about 7 hrs from Dr Pimentel. We then saw dr pimentel the next day. He is very very nice and he is very thorough in explaining himself. We got a lot of info from him. Basically he looked over my chart and said that yes I have IBS and yes I have SIBO. I did the breath test at home kit from Quintron to determine that months ago. I then told him that I did the rafiximin for 10 days at 1200 mg a day, and I didn't notice much change and the second breath test kit confirmed it hadn's killed the bacteria. He said that was ok and that some people don't get it all the first round. So he said his plan for me is to do another round of the rafiximin at higher dose this time and see if that works, if it doesn't get it all this time then he said he will have me do the Vivonex diet sometime in January, and he seems pretty confident that between those it will kill the bacteria. Then he said once the bacteria is gone he will put me on a low dose of Zelnorm. I was nervous about that since I have IBS D but he said that he understands my apprehension, but his studies have found that after getting rid of the bacteria you have to get your motility moving faster so it can keep the bacteria out for a while longer. He said he has had a 90% success rate in treating people with IBS/SIBO in this way, and he did say that this is NOT a cure. He said that he believes that most people with IBS/SIBO get it through some kind of toxin or food poisioning and then the toxin stays in your gut for years and builds up the bad bacteria, but he said the toxins also cause damage to you, to what extend he does not know, but the toxins also slow down your motility trying to prevent your body from getting rid of it through the cleansing waves. So he wanted me to know that this is not a cure, but a treatment plan. He said his patients have had up to a year with out symptoms before having to do the treatment all over again, but during the year they felt great. He was really great and it was so nice to talk to a doctor who really understands what I am going through. He did tell me that there are only 20 doctors/facilities in the country that do what he does and that he/Cedar Sinai is the #1 leading hospital doing this type of research. He said it is very hard for people to attempt to be treated by his treatment plan with out becoming one of his patients, because most doctors have not heard of his research yet so they are guessing right along with the patient and if you are his patient he knows what he has been researching and he knows what to try next if the first thing doesn't work. He said with his research and the time it takes to do the research and then document it and then publish it and then release it to the general doctors the process takes about 2-5 years, so he said basically he is about 2-5 years ahead of most of our doctors. He didn't say this in a bragging way at all, more just to let us know and to help us to understand the importance of seeing him. My husband and I agreed he was the most informative doc we have seen in the 12 years of my IBS. So basically we are going to try his treatment plan once more, but this time i am now an established patient of his, and he and his staff will guide me through the process. He looked over my file and said he didn't need to run any additional test because I had already had all the basic testing and breath testing done and I brought my entire file with me so he let us go home, so we left his office and drove home that night leaving LA at 6:30pm and getting home at 2:00am so we drove 14 hrs within a 24 hr period, but it was well worth it. I felt confident when we left that he could help me. He did tell us while we were there that he sees patients that are the mystery patients meaning when no other doctor can find out what is wrong with you then they send you to Dr pimentel and he said it is his job to solve the hardest cases. That made me feel a lot better. I am so glad we made the trip. I would highly encourage any of you who could afford to make the trip to do it, even if his treatment doesn't work, he was the most informative doc I've had so far. My husband and I agreed that even if he is wrong, he is the best guess out there right now. So I have an appt with my local GI next wed to update him on the treatment plan and by then I should have my medication so I will start the rafiximin again and see if it works. By the way my husband and I couldn't believe how much God blessed us on the trip, as most of you know what it is like to have to travel long distances with IBS I was already worried about making the long drive in january and I had been praying that God would help me to not worry about the trip, and then when I got the call on Monday and things happened so fast I didn't have time to worry and I literally felt like he carried me in the palm of his hands the entire trip. He put me and my tummy on autopilot and he took control and I had no tummy problems. Also on the drive to LA (which we have made before) late at night it can get really Foggy and I had my friend pray with me right before we left Monday night and she prayed for us to have a safe trip and no Fog on the freeway. You guys won't believe this but on our way down and on our way back both sides of the freeway the fields were foggy, my husband and I could barely see the lights on the farm houses, but the freeway was completely clear. It was amazing, we totally felt God guiding us on this trip. So even though I dont like having the IBS everyday, I am feeling peaceful and content knowing that my life is in God's hands and he knows what I need better then I do, so I'm trying to stop worrying and let him do his work. If the medication works then great what a blessing, but if it doesn't I know that God has another plan that will be a blessing as well. So we will see how it goes. I'm going to have a busy next couple of weeks, but I will try to respond to any questions as quickly as I can. I wanted to make sure to tell all of you about the trip and what I learned. Hope this helps and like I said I encourage anyone who can to make the trip to see him in person, or have your docs talk to him over the phone. Have a great day!!Love,Kimber


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## Moises

Kimber,You have made a strong case for those of us who can to visit Dr. Pimentel. I am glad to hear that you found some consolation.Do you know the "stronger" rifaximin dose he proposed? Others have posted a new study using rixamin 1100 mg twice a day.moises


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## eric

While I understand people's enthusiasm and hope, it is very important really to understand somethings about a POSSIBLE relationship to IBS and SIBO. One is others center are not finding the same results as Cedars. This is fairly new research and their is a lot of other research in regards to IBS and abnormalities. There are some major IBS research centers around the world. There is a lot of hype from the media and the Drs. new book. However there is a lot that has not been established and problems even with the studies, from the first one to the last one. In the last one only 1/3 of the people giot better and that was only on bloating not pain or d or c or d/c.The lactolose breath testing has problems as well. There are better breath testing methods.Does Bacterial Overgrowth Play a Role in IBS?Bacterial Overgrowth & IBS: Too Soon To Tellhttp://www.gastro.org/wmspage.cfm?parm1=1703People witout IBS can have sibo and people with IBS might not have sibo. There is a lot of controversy in regards to sibo and IBS in the IBS research community. Small Intestinal Bacterial Overgrowth and Irritable Bowel Syndrome: What Is the Association?QuestionWhat is the evidence for the role of small intestinal bacterial overgrowth in the etiology of irritable bowel syndrome?http://ibsgroup.org/groupee/forums/a/tpc/f...261/m/947102852From Medscape General Medicineâ„¢MedGenMed GastroenterologyIBS -- Review and What's NewPosted 07/26/2006Amy Foxx-Orenstein, DO, FACG, FACP Abstract and Introduction"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_3Is this a dramatic new finding? Breath testing when considering a diagnosis of IBS has been around a long time. A preliminary diagnosis of IBS is based on the absence of warning signs for other known diseases, a complete history, and description of specific symptoms (e.g., a symptom pattern consistent with the Rome criteria, which have recently been revised as Rome II). Depending on the presentation, a physical examination and limited laboratory studies are performed before a confident diagnosis of IBS may be made. A breath test is considered if indicated by features in the patient history, or if the screening studies point to another diagnosis. Small intestinal bacterial overgrowth is known to cause symptoms of abdominal pain, bloating, and diarrhea. While similar to IBS, it points to another diagnosis."http://www.aboutibs.org/Publications/bacteria.htmlDr Drossman is the chairman of the rome committee to diagnose IBS and is a regonized leading world expert on IBS.""Dear Shawn Eric,I do feel that the issue of bacterial overgrowth is an important considerations in IBS, and these authors have gone a long way to advance this area of investigation and raise awareness of bacterial overgrowth as a possible player in IBS. It kind of relates to other work being done in the area of post-infectious IBS and altered mucosal immunity in subsets of IBS. However, there is some disagreement within the community with regard to the prevalence in patients with IBS, these authors claiming up to 80% and others finding far less by standard methods. Another issue of concern is that explaining bacterial overgrowth as the cause of so many other aspects of the condition is going beyond the available scientific data. Their work should be considered more in the way of opinion/speculation, rather than accepted dogma within the medical community, and further confirmation is needed. You should keep in mind that all scientists will from time to time try to extend their data into understanding other aspects of a condition, but the checks and balances within medicine lead to common acceptance when there is confirmation from other groups and more conclusive evidence. That has not happenned as of yet but remains an area of interest in the field.Doug"There is also an editorial in the last issues of Gatroenterology if anyone wants me to email them it.Again SIBO is important and so is IBS, but at the moment a lot of work needs to be done.


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## 17908

I think it's important for people to remember that whatever works, WORKS.Pimental's regimen has been working GREAT for me. For some it won't work great.By the way, Kimber, I needed 20 days of rifaximin to experience results. I also have IBS-D, and I was nervous about starting the Zelnorm, but it was completely fine after a 2 or 3 day adjustment period.


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## Rick (never give up)

Hi Kimber,I found very interesting this specific text that you wrote:


> quote: He said that he believes that most people with IBS/SIBO get it through some kind of toxin or food poisioning and then the toxin stays in your gut for years and builds up the bad bacteria, but he said the toxins also cause damage to you, to what extend he does not know, but the toxins also slow down your motility trying to prevent your body from getting rid of it through the cleansing waves.


 It is the first time I read that Pimentel talks about additional possible causes rather than SIBO. In fact, I may cansider this argument an indication that perhaps SIBO is not a cause but rather a side effect of some kind of toxicity.Of course I also have to agree with npearce. My ND told me once that somebody once said "If the facts and the theory contradict each other, I rather stick with the facts". So, if it works it works. But for those who doesn't, its a good point to notice that Pimentel may be suggesting a more profound explanation related to toxicity.And again, as I wrote in other posts, the motility issue arises. Suspicious?Kimber I wish you the best of luck.


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## eric

Rick,"get it through some kind of toxin or food poisioning"This is called Post Infectious IBS. A person gets food poisoning or enteric gastroenteritis. The Intial Infection is then RESOLVED and a person can develop IBS. However not everyone who gets gastroenteritis develops IBS. There are factors that contribute to the development. It is believed about thirty percent or more develop IBS this way.However when they look very closely at the digestive system there are STRUCTURAL changes.A world expert on PI IBS and probably the top DR on it is DR Robin Spiller in the UK.http://ibsgroup.org/groupee/forums/a/tpc/f...05561#557105561One important change is the EC cells or enterochromaffin cells which store the majority of serotonin in the gut. The serotonin is very important in regards to motility and sensation and secretion. Another important cell is the mast cell embebbed in the gut wall. Distinctive Features of Postinfective Irritable Bowel Syndrome http://www.medscape.com/viewarticle/459230Gastroenterology 2003 Jun;124 6:1662-71 Related Articles, LinksClick here to read Postinfectious irritable bowel syndrome.Spiller RC.A small but significant subgroup of patients with irritable bowel syndrome IBS report a sudden onset of their IBS symptoms after a bout of gastroenteritis. Population-based surveys show that although a history of neurotic and psychologic disorders, pain-related diseases, and gastroenteritis are all risk factors for developing IBS, gastroenteritis is the most potent. More toxigenic organisms increase the risk 11-fold, as does an initial illness lasting more than 3 weeks. Hypochondriasis and adverse life events double the risk for postinfective PI-IBS and may account for the increased proportion of women who develop this syndrome. PI-IBS is associated with modest increases in mucosal T lymphocytes and serotonin-containing enteroendocrine cells. Animal models and some preliminary human data suggest this leads to excessive serotonin release from the mucosa. Both the histologic changes and symptoms in humans may last for many years with only 40% recovering over a 6-year follow-up. Celiac disease, microscopic colitis, lactose intolerance, early stage Crohn's disease, and bile salt malabsorption should be excluded, as should colon cancer in those over the age of 45 years or in those with a positive family history. Treatment with Loperamide, low-fiber diets, and bile salt- binding therapy may help some patients. Serotonin antagonists are logical treatments but have yet to be evaluated.PMID: 12761724The next one is the most up to date paper yet on the subjectPost-infectious Irritable Bowel DyndromePosted 12/08/2005Robin Spiller; Eugene Campbell Abstract and IntroductionAbstractPurpose of Review: Irritable bowel syndrome patients form a heterogeneous group with a variable contribution of central and peripheral components. The peripheral component is prominent in irritable bowel syndrome developing after infection (post-infectious irritable bowel syndrome) and this has proved a profitable area of research.Recent Findings: Recent studies have overthrown the dogma that irritable bowel syndrome is characterized by no abnormality of structure by demonstrating low-grade lymphocytic infiltration in the gut mucosa, increased permeability and increases in other inflammatory components including enterochromaffin and mast cells. Furthermore, increased inflammatory cytokines in both mucosa and blood have been demonstrated in irritable bowel syndrome. While steroid treatment has proved ineffective, preliminary studies with probiotics exerting an anti-inflammatory effect have shown benefit.Summary: The study of post-infectious irritable bowel syndrome has revealed the importance of low-grade inflammation in causing irritable bowel syndrome symptoms. It has suggested novel approaches to irritable bowel syndrome including studies of serotonin and histamine metabolism which may be relevant to other subtypes of of the disease.Abstract and IntroductionClinical FeaturesImportance of Psychiatric FeaturesRole of SerotoninRole of Inflammatory CytokinesRole of Mast CellsEvidence of Chronic Inflammation in Irritable Bowel SyndromeAnimal Models of Post-infective Irritable Bowel SyndromeAnti-inflammatory Effect of ProbioticsAnti-inflammatory Treatments in Irritable Bowel SyndromeConclusionhttp://www.medscape.com/viewarticle/518355?src=mpIts important to remember at this time IBS is NOT considered a bacterial infection. For example from another center Gut. 2006 Dec 5; [Epub ahead of print] LinksSmall intestinal bacterial overgrowth in patients with irritable bowel syndrome.Posserud I, Stotzer PO, Bjornsson E, Abrahamsson H, Simren M. Sahlgrenska University Hospital, Sweden.Background & aims: Small intestinal bacterial overgrowth (SIBO) has been proposed to be common in irritable bowel syndrome (IBS), with altered small bowel motility as a possible predisposing factor. The aim of this investigation was to assess the prevalence of SIBO, using culture of small bowel aspirate, and its correlation to symptoms and motility in IBS. METHODS: We included 162 IBS patients who underwent small bowel manometry. and culture of jejunal aspirate. Cultures from 26 healthy subjects served as controls. Two definitions of altered flora were used: standard definition of SIBO (>/=105 colonic type bacteria/mL), and mildly elevated counts of small bowel bacteria (>/=95th percentile in controls). RESULTS: SIBO (standard definition) was found in 4% of both patients and controls. Signs of enteric dysmotility were seen in 86% of patients with SIBO and 39% of patients without SIBO (p=0.02). Patients with SIBO had fewer phase IIIs (activity fronts) compared with patients without SIBO (p=0.08), but otherwise no differences in motility parameters were seen. Mildly elevated bacterial counts (>/=5x103/mL) were more common in patients compared with controls (43% vs. 12%; p=0.002), but this was unrelated to small intestinal motility. No correlation between bacterial alterations and symptom pattern could be observed. CONCLUSIONS: Our data do not support an important role for SIBO according to commonly used clinical definitions, in IBS. However, mildly elevated counts of small bowel bacteria seem to be more common in IBS and needs further investigation. Motility alterations could not reliably predict altered small bowel bacterial flora.PMID: 17148502


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## 18196

HI Everyone,I just made my way through registration and this is my first post. I have Dr. Pimentel's book and have also identified the bacteria in my gut with a comprehenive stool anaylisis. I addressing the bacteria with various antibotics and I am going to finsih up with the rafiximin. I talked my own doc out of 10 days at 200 mg dose, three times a day. The post I read said 1200! Did Dr. Pimentel give you the higher dosage or is this a typo. I have the gas and bloating. Malaborption. My Krebs cycle is running flat. That means my energy is zilch. Thank you all for your time and help.Janet


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## Nanobug

> quote:I talked my own doc out of 10 days at 200 mg dose, three times a day. The post I read said 1200!


The typical Pimentel dosage appears to be 400mg thrice daily. However, Salix (makers of Xifaxan) have a clinical trial going with even more.


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## eric

Janet, what test was this and who did the testing?"comprehenive stool anaylisis"Was this the great smokies lab?Was it a stool sample?Also fyi from the lastReport from the 6th International Symposium on Functional Gastrointestinal DisordersBy: Douglas A. Drossman, MD and William F. Norton, IFFGD"Some of the major research advances that support the integrated or biopsychosocial approach include: Genetic and early environmental influences on the functional GI disorders The role of neurotransmitter and neurohormonal signaling in intestinal/enteric functionThe use of animal modelsNewer research relating to altered neuroimmune function, cytokine (cell molecules involved in the immune system response) activation, and brain-gut interactions*Demonstration of post-infectious IBS as a brain-gut disorder*The role of brain imaging in understanding the modulation of visceral pain "http://www.iffgd.org/symposium2005report.html


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## 18196

HI Eric,Yes it was Great Smokies lab, they are now known as Genovations, but same company. My gut is so screwed up, my Krebs is flat. I am going to try Dr. Pimentel (just called the office and he doesn't take any new patients) does refer out, and see where I go. Thanks for the additional info you sent. I will look it over carefully,Janet


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## eric

Janet, was it just a stool sample?There are very specific tests for sibo and its a different issue then just a bacterial sample from a stool sample. This is important, especially in regards to taking antibiotics.


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## 18196

Yes, Eric, it was just a stool sample. I am new here. Tell me what I am missing. Just trying to get rid of the gas and bloating issues. I have done food allergy tests as well. The stool test did list out 3 sources of bacteria in my gut.Janet


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## Nanobug

> quote:it was just a stool sample


The stool sample will measure bacteria in your colon as well which means you may not have SIBO. However, if you have nasties in your colon, rifaximin may very well be of help.


> quote:The stool test did list out 3 sources of bacteria in my gut


Could you enumerate?


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## kimber

Hello everyone,I have just read over everyone's responses and I'll answer the questions that were asked.Moises: The normal dose Pimentel gives is 400mg three times daily totaling 1200mg a day.The higher dose he wants me to take is 800mg three times daily totaling 2400 mg daily for 10 days. That being said I do not suggest anyone put themselves on such a high dose, I would talk to your doc about it first and have him call Pimentel or one of his referrals before putting anyone on the higher dose. Npearce: Thank you for letting me know about the Zelnorm being fine for you. I am expecting an adjustment period as well, but I hope it winds up being fine for me too. I am so glad that pimentel's stuff is working for you and I totally agree with you whatever works, WORKS!! What works for one may not work for another all we can do is share our success stories. Good luck to you!Eric: Thank you for all the information you have provided. I want to be clear that I am in no way trying to say that everyone with IBS has SIBO, I am just passing along any info that I am getting. I think that is the best we can do is share with each other what we learn. Pimentel might very well be wrong, but for me he is the best guess out there right now. I have tried too many things over the years that have not worked, that I will try this and when dr pimentel was explaining it to me and my husband it made sense. Like I said he might be wrong and his treatment might now work for me, but I'm going to give it a try. Also Npearce says it worked for him so if pimentel's research and theory/treatment only works on one person well to me that is better than nothing atleast one person was helped and relieved of their symptoms. That's the way I look at it anyway, but you did post some interesting articles, thank you for researching it.Rick: Thanks for your good wishes, I hope it works too.Janet: I am so sorry that Pimentel is not taking new patients. I had no idea about that when I posted a message encouraging people to see him. I made my appt with him back in July and then appt was for January, until I got the call about the cancellation last week, so I had no idea since July at some point he has stopped taking new patients. After I read your post I called his office and they told me they don't know when he will be taking new patients again, but he is referring people to three other doctors who work with him at Cedar Sinai. They gave me the info. The doctors that Dr pimetel recommends seeing are. . . *Dr. Gil Melmed 310-652-8031*Dr. Siamak Tabib 310-652-4472*Dr. Ted Stine 310-385-3506There is their info, pimentel's office staff told me that pimentel highly recommends these three doctors. So maybe you could get in to see one of them. Good luck to you!


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## eric

IBS is not at this time a bacterial infection.There have been a lot of people here over the last five years that have had the great smokies stool testing. They almost always find something. Higher bacterial counts don't always mean you have a bacterial infection however. Bacterial infections are not IBS.Sibo is a specific condition.Irritable Bowel Syndrome (IBS)http://www.medicinenet.com/irritable_bowel...ome/article.htmSIBOhttp://www.medicinenet.com/small_intestina...rowth/page6.htmat this time they are two different conditions.It maybe they overlap.IBS is a very very complex condition and its looking like sibo is as well. This creates a problem with some of this new information coming out to patients. They maybe treating things they don't fully understand really and in some cases probably treating the wrong problems. Some of which maynot be a good idea.


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## eric

On the Post Infectious IBS, this is new from Dr Spiller." Neurogastroenterol Motil. 2006 Dec;18(12):1045-55. Links Role of motility in chronic diarrhoea.Spiller R.Wolfson Digestive Diseases Centre, University Hospital, Nottingham, UK.Patients complaining of 'chronic diarrhoea' usually mean the passage of loose, urgent stools. Chronic diarrhoea is a feature of malabsorption; it may also be seen in the 'dumping syndrome' which follows gastric surgery, small intestinal bacterial overgrowth, bile salt malabsorption and in malabsorption of simple sugars including most commonly lactose, fructose and sorbitol. Excessively rapid entry of chyme into the small or large intestine generates propulsive motor patterns leading to accelerated transit. Inflammation is associated with decreased normal mixing motor patterns but increased propulsive motility including high amplitude propagated contractions (HAPCs). Evidence for abnormal small intestinal motility in the diarrhoea associated with irritable bowel syndrome (IBS) is conflicting and any difference appears small. Increased colonic HAPCs with increased propulsion is seen in IBS with diarrhoea (IBS-D). Stress-induced colonic motility is increased in IBS-D with hyper-responsiveness to corticotrophin releasing factor (CRF). Long-lasting increases in mucosal serotonin availability may contribute to the chronic diarrhoea seen in IBS-D and coeliac disease. Treatments for abnormal motility in chronic diarrhoea include those designed to correct specific underlying abnormalities including octreotide, antibiotics, colestyramine, specific food avoidance and anti-inflammatory agents. There are also treatments aimed primarily at altering motility directly including opiates, 5HT3 receptor antagonists and amitriptyline.PMID: 17109687


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## 22904

Inactive Account


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## eric

Intuition I am not sure if this Dr see patients or if he is just a researcher, but he is a top doc.W. Grant Thompson Emeritus Professor of Medicine, University of Ottawa, Ontario, CanadaI know there is another one, but I am trying to find them.You might also ask Jeffery Roberts the owner of the bb here since he lives up there and I am sure knows people.One of the other ones is S M COLLINS McMaster University, Hamilton, Ontario, Canada


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## Moises

kimber,Thanks for the update. Please keep us posted on the results of your high-dose rifaximin regimen.moisesEric,I am a firm believer in science. Wishing does not make something so. Making strong statements does not make something so.Your statement that, "IBS is not at this time a bacterial infection," perplexes me. Could IBS be SIBO at a later time? This is a strong statement that is not yet well-supported. Pimentel makes a strong statement, "IBS is SIBO." This is a strong statement that is not yet well-supported. The fact is that no one gets to be on the Rome committee and no one sells a lot of books by saying, "The field of IBS studies is in disarray. There is a lot of exciting research pointing in many directions: SIBO, serotonin, immunology, psychiatry, etc. But, in all honesty, we do not have a clear understanding of the etiology of the syndrome described as IBS."I agree with you that Pimentel overstates his case. It is also an overstatement to categorically deny that IBS is SIBO.The fact is that Pimentel is attempting to revolutionize IBS studies. He is attempting to overthrow the accepted dogma as it is currently captured in the Rome criteria. He states this explicitly in his book where he criticizes the Rome criteria and states that they are not as well-supported as the Manning criteria they supplanted.Pimentel has ruffled the feathers of the defenders of the accepted paradigm as embodied in Rome. Maybe Rome is the best we have at this time. Maybe Pimentel's paradigm is superior. I do not know. So I am going to withhold judgement until there is a lot more evidence available.Pimentel is redefining the concept "IBS." I would oppose his doing so, if the existing IBS concept had spawned a fruitful research program. But the existing IBS concept has not been able to solve the problems of millions of people, a small percentage of whom populate this discussion forum.This particular corner of the forum, the SIBO forum, is where those of us who have not found relief from gastroenterologists adhering to Rome are testing SIBO theory ourselves. My judgement is that it is too soon to say whether Pimentel's research program will bear fruit. _We just don't know enough yet._ I don't think I will get millions to follow me by stating that too much remains to be seen. I don't think I'll sell many books by telling people we just don't know. I think it would be wise to intervene with strong statements in these discussions if there were evidence that people were harming themselves by experimenting with Pimentel's protocol. But I am not aware of any evidence that Pimentel's recommendations are causing injury to anyone. They do cost money and time. But so did all the other regimens my various GI docs put me through. I don't condemn my GI for giving me Bentyl for a year. He obviously had a very limited understanding of what was going on in my gut. I am sure Pimentel's understanding is also very limited. Maybe, just maybe, it's marginally less limited than everyone else's.


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## Nanobug

> quoteimentel has ruffled the feathers of the defenders of the accepted paradigm as embodied in Rome.


Indeed! And this is the reason why the "experts" are pissed. Eric didn't "get it" the first time I said it but maybe your eloquence changes that this time. We'll see!


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## eric

Moises, I will try to go over this a little at a time here.But have you ever heard Dr Sagan's quote, "Extraordinary claims require extraordinary evidence."In order for sibo to be IBS there must be proof. That has not been done yet, so its way to early to call them the same condition. The proof needs to come before the claiming it is yes?A while ago they had issues with lactose intolerence and IBS. Now they know they are different conditions. Doctors have known about the condition of SIBO now for a long time and that it can mimick some IBS symptoms.All they really know now from the research is some people with IBS have SIBO. That still doesn't make sibo IBS. "IBS is not at this time a bacterial infection,"Show me proof IBS is a bacterial infection? Not a theory or speculation. When they have proof then it may change the rearch on IBS. That has not been done yet.There is a big difference between selling books and the rome commitee. To legitimize GI disorders of Function"There is now rome lll. Have you looked that over closely?http://www.romecriteria.org/GastroIssue.htm"There is a lot of exciting research pointing in many directions: SIBO, serotonin, immunology, psychiatry, etc."Yes and that is a good thing, but sibo has to fit into all the reasearch, and there is a ton of research going on all over the world. Dr Pimental and his collaborators are one center. There has also been problems with his research from the very first study in making some of the speculations and connections they have made with the research.Also as you mention above""Serotonin SignalingOf the putative mechanisms underlying the pathophysiology of IBS, the strongest evidence points to the role of serotonin in the GI tract. ""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."http://ibsgroup.org/groupee/forums/a/tpc/f...261/m/112107072That "substantially large body of work" is from centers all over the world combined.There is also what treatments for IBS have worked, because that is in part a clue as well and some people have been helped by the new serotonin drugs. We also know that Dr Pimental uses those drugs, on motility.Lets also look at the current model they use for IBS.







Understanding this model is important. It takes into account everything, it is a holitic approach to all the issues from genetics, to physiology, to behavior all which can effect and contribute to IBS. Its a bigger picture.You might also notice statements like these"revolutionize IBS studies.""overthrow the accepted dogma ""Pimentel is redefining the concept "IBS."There you mean science and a ton of research.You may notice statements like that are comng from their center and their book. You haven't seen the majority of researchers making those claims, because they research judement on it till there is proof. We are also not seeing absolutley every IBSer with sibo? In fact there seems to be way less then from the cedars group. They also used a test at first that over predicted sibo in the intial studies.When you mention the word bacteria to new IBSers, it sells."I would oppose his doing so, if the existing IBS concept had spawned a fruitful research program." In majorally has an I have posted above some of the new research. IN IBS they have found structural abnormalities!!! They are also begining to understand the complexities of brain gut axis communications which is extremely complex, that is also major.All of this is very important to IBS research. This is something else to rememberThis is another Major doctor in IBS research a neurogastroenterologist.Visceral Sensations and Brain-Gut MechanismsBy: Emeran A. Mayer, M.D., Professor of Medicine, Physiology and Psychiatry; Director, Center for Neurovisceral Sciences & Women's Health, David Geffen School of Medicine at UCLAhttp://www.aboutibs.org/Publications/VisceralSensations.htmlThis is like throwing the baby out with the bath water, The baby being sibo and IBS theory and the bath water being a huge amount of research done on IBS in the last 10 years."if there were evidence that people were harming themselves by experimenting with Pimentel's protocol." There is one this thread even where people could be possibly harming themselves without the care of a physician while they experiment in something very complex most don't understand. You know the Father of neurogastroenterology is working on IBS and so are some major world experts. Their research and opionins matter. ""experts" are pissed." what experts are pissed? They are concerned and for good reasons."Does Bacterial Overgrowth Play a Role in IBS?Bacterial Overgrowth & IBS: Too Soon To TellBy Philip Schoenfeld, MD, MSEd, MSc (Epi)Associate Professor of Medicine, University of Michigan School of Medicine Chief, Division of Gastroenterology, VA Ann Arbor Healthcare System Irritable bowel syndrome (IBS) has been described as a â€œfunctionalâ€ disorder, which is a â€œdiagnosis of exclusion.â€ Thus, many physicians still think IBS has no demonstrable pathophysiologic defects and that it can only be diagnosed after other â€œorganicâ€ disorders have been ruled out with multiple diagnostic tests.Recent data demonstrate the fallacy of this assumption. Irritable bowel syndrome IS characterized by multiple pathophysiologic defects:Altered gastrointestinal motility (1-2) Visceral hypersensitivity (1-2) Abnormal IL-10/IL-12 ratios consistent with pro-inflammatory Th-1 state (3) Infiltration of lymphocytes and neuronal degeneration in the myenteric plexus (4) Defects in serotonergic signaling mechanisms in the enteric nervous system of the GI tract (5) Unfortunately, these pathophysiologic defects cannot be identified by conventional laboratory testing. Therefore, we rely on the symptom-based IBS diagnostic criteria of the ROME committee (i.e., the presence of abdominal discomfort for at least 12 weeks in the past 12 months associated with a change in the consistency/frequency of stool or relief of discomfort with passage of stool) or the American College of Gastroenterology (i.e., IBS is defined as abdominal discomfort associated with altered bowel habits) (1-2). However, the reliance on symptom-based criteria to diagnose IBS should not de-emphasize the pathophysiologic defects expressed by IBS patients."Take a look at some of these other doctors and who they really are and their credentials.DR Wood The person who coined the word "brain in the gut" which there is!Dr Gershon- The person who discovered the brain in the gut and the fathr of neurogastroenterology.Dr Spiller probably the top expert on post infectious IBS.Dr Whitehead a regonized expert in consitpation and IBS.Dr Drossman- a recgonized world expert on IBS and chairman of the rome committee as well as many other accomplished credentials.ESTHER M. STERNBERG M.D. - is internationally recognized for her discoveries in brain-immune interactions. Chief of the Section on Neuroendocrine Immunology and Behavior at the National Institute of Mental Health, Dr. Sternberg is also Director of the Integrative Neural Immune Program,http://www.esthersternberg.com/biography.htmThere are many many others as well.Take a look at the combined efforts, research and information. All of these doctors are working very hard in many fields to help us all.http://www.iffgd.org/symposium2005report.htmlhttp://www.iffgd.org/symposium2003report.htmlThis is also important. IF YOu have sibo you want to treat it. Getting an accurate diagnoses first is essential. Lets post what tests are best for that as well.Whats not a good idea, doing this without a knowledgeable doctors help.If you have IBS the same applies. Reading all the material applies. Being skeptical always applies, until there is a large body of research from different centers that agree applies.The media and maybe even possibly the center has used very forward statements. Upon closer examination a more detail picture arises of the actual success rates, of questionable studies, people without sibo having IBS and people without IBS having sibo ect..Awareness of sibo is a good thing as well. Treating the right problem/problems is really a good thing.Messing with the intricate balance of bacteria in the gut without a diagnoses and a doctor who knows what they are doing is not a good thing.Do we really know the role of antibiotics in IBS yet? "are testing SIBO theory ourselves."I know and hopefully not diagnosing themselves, the leading reason for a misdiagnoses is self diagnoses.Which is one reason to talk about the best testing mehtods and to be tested!!!One doctor theories need to be tested by others that is the nature of the scientific method. That things need to be confirmed. That has happened with some physical abnormalities in IBS. Its also not likely that IBS is exactly the same in every IBSers, which is why some people have d and some c and some d/c and some mild some moderate and some severe. Its also why they do other studies and know more women have IBS then men for example. Kids have it and another huge body of research in who it effects ect., which all needs to be taken into account.


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## eric

Moises a couple questions for you.How does the gut brain signal to the brain sensations and pain in all people?Why can't inflammation be a biological marker in IBS?What is the accuracy of the rome diagnoses in IBS?also have you watched this?http://www.ja-online.com/dukeibs/#The majority of the researchers studying and treating IBS recommned an Integrated Approach to treating Irritable Bowel Syndrome.Also from what I am seeing it seems at least to me that sibo is chronic condition in most people and so is IBS. So its looks like they haven't gotten all that far with sibo either.


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## Nanobug

Eric,Once again, you didn't "get it!"The truth of the matter is that there is no unified theory of IBS that explains all symptoms people diagnosed with IBS have. As such, the SIBO hypothesis is as good as any other hypothesis.It is quite possible that Pimentel is wrong. But then again, the "experts" don't appear to offer a great deal of hope in the understanding department either. Therefore, to give more weight to the "experts" than to Pimentel is unwarranted. At least Pimentel is helping patients instead of sitting all day in committees! Oh, and there are two people in this board (npearce and myself) that have already been helped by Pimentel's ideas.Your constant attempts to debunk Pimentel end up being just annoying because they don't offer people *anything* of value in dealing with their problems. After all, these are support boards, are they not?


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## eric

Kimber, we must have been posting at the same time before.I am glad the information was interesting to you and hopefully to others as well. All information is knowledge and helps empowers people to help themselves. Nanobug, I am not going to respond to your post.


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## CinNJ

Any word on developments for IBS-C? I've tried the standandard rifaximin dose a few times and it doesn't really do much. Has anyone heard about antibiotics that work better for IBS-C sufferers? Maybe the increased rifaximin dosage will help. I've been avoiding the Vivonex protocol as I've heard the horror stories about taking it. Maybe they've come out with someting that works the same way but doesn't taste horribly.


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## Moises

> quote:Originally posted by CinNJ:Any word on developments for IBS-C? I've tried the standandard rifaximin dose a few times and it doesn't really do much. Has anyone heard about antibiotics that work better for IBS-C sufferers? Maybe the increased rifaximin dosage will help. I've been avoiding the Vivonex protocol as I've heard the horror stories about taking it. Maybe they've come out with someting that works the same way but doesn't taste horribly.


Some studies suggest neomycin is more effective with C. Neomycin has more risk of side effects, however.


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## eric

The majority of patients with sibo have d.What are small intestinal bacteria overgrowth symptoms? The symptoms of SIBO include:excess gas, abdominal bloating and distension, diarrhea, and abdominal pain. "A small number of patients with SIBO have chronic constipation rather than diarrhea. "How does small intestinal bacterial overgrowth cause symptoms?When bacteria digest food in the intestine, they produce gas. The gas can accumulate in the abdomen giving rise to abdominal bloating or distension. Distension can cause abdominal pain. The increased amounts of gas are passed as flatus (flatulence or farts). The bacteria also probably convert food into substances that are irritating or toxic to the cells of the inner lining of the small intestine and colon. These irritating substances produce diarrhea (by causing secretion of water into the intestine). There is some evidence that the production of one gas by the bacteriaâ€"methaneâ€"causes constipation. http://www.medicinenet.com/small_intestina...rowth/page2.htmThey have not yet figured out yet how sibo causes constipation other then speculation and theory.If a person has constipation there are a lot of other avenues to investigate. OR an accurate breath test method which is also hard, but lactulose seems to over predict and there seems to be more accurate methods.also"A positive hydrogen breath test does not always mean that a patientâ€™s symptoms are caused by SIBO. "This is on testinghttp://www.medicinenet.com/small_intestina...rowth/page4.htmCinNJ Were you tested for SIBO?Have you ever had a sitz marker test?


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## eric

CinNJ FYIHave you ever heard of this?"Outlet obstruction type constipation (pelvic floor dyssynergia)The external anal sphincter, which is part of the pelvic floor normally stays tightly closed to prevent leakage. When you try to have a bowel movement, however, this sphincter has to open to allow the fecal material to come out. Some people have trouble relaxing the sphincter muscle when they are straining to have a bowel movement, or they may actually squeeze the sphincter more tightly shut when straining. This produces symptoms of constipation. "http://www.iffgd.org/GIDisorders/GIAdults.htmlIt is also a type of functional disorder.alsoFYI"Constipation can be classified into 3 broad categories: normal-transit constipation, slow-transit constipation, and disorders of defecation or rectal evacuation.8 Normal-transit constipation is the most common type. Patients report feeling constipated even though their stools pass through the colon at a normal rate and the frequency of movements is within the normal range. Patients may perceive their bowel habits as abnormal because of abdominal pain, bloating, straining, or hard stools.8 Patients with IBS have symptoms similar to those of normal-transit constipation; however, abdominal pain, in association with changes in stool frequency and consistency, must be present before IBS can be diagnosed.9Slow-transit constipation is caused by impaired phasic colonic motor activity, delayed emptying of the proximal colon, and reduced high-amplitude peristaltic contractions after meals.8 It is most common in young women, and onset usually occurs at puberty. Patients report infrequent BMs (<1 per week), although straining is not a common symptom in this form of constipation. Disorders of defecation are usually due to dysfunction of the pelvic floor or anal sphincter. Failure of the rectum to empty effectively may result from ineffective coordination of the abdominal, anorectal, and pelvic floor muscles during defecation.8 Patients with pelvic floor disorders typically describe an inability to defecate despite a sense of urgency, although they often report straining on defecation and the need for manual digitation."You might want to look this site over.http://www.aboutconstipation.org/index.html


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## eric

This is new on SIBO and consipation and IBS.ACG 2006 - Evaluation and Treatment of IBS and Chronic Constipation CME"Bacterial OvergrowthThe role of small intestinal bacterial overgrowth in the pathogenesis of IBS symptoms remains controversial. A number of studies during this year's ACG meeting addressed this topic, often with widely discordant results. Lee and colleagues[31] presented results from a retrospective chart review of patients with IBS (defined by Rome I criteria) who had a positive lactulose breath test; 84 subjects were eligible for inclusion and received rifaximin* (varying doses). Twenty-five subjects had a normal follow-up breath test and reported a > 50% improvement in IBS symptoms (not further characterized; age and sex also not reported). On the basis of these findings, the study authors suggested that using rifaximin to treat bacterial overgrowth can improve IBS symptoms. It is important to note that no placebo group was included in this retrospective study, and a simplified intention-to-treat analysis showed that only 30% of IBS patients will improve with rifaximin.Weinstock and colleagues[32] reported on a novel treatment strategy for managing patients with IBS that employed a comprehensive protocol using multiple medications. In this study, 161 of 254 IBS patients (defined by Rome II diagnostic criteria) screened had a positive lactulose breath test (63%). Patients were treated with rifaximin (400 mg 3 times daily for 10 days); zinc and a bifidobacter-based probiotic (neither zinc nor Bifidobacterium has been subjected to FDA review for this purpose), each for 1 month, and nightly prokinetic therapy (tegaserod; 3 mg). Eighty-one (50%) patients were available for follow-up, and at 2 months, 60% of these subjects noted a persistent improvement in symptoms of bloating, gas, fullness, and abdominal pain (mean age and sex not reported). Follow-up breath testing was not performed. These findings are intriguing because they reflect what many clinicians do in practice -- treat the multiple symptoms of IBS with multiple medications. However, the use of multiple concurrent medications without the inclusion of a placebo group makes it impossible to determine which medication (antibiotic, probiotic, mineral, prokinetic) was responsible for the apparent symptomatic improvement.Ruff and colleagues,[33] from the Mayo Clinic College of Medicine in Rochester, Minnesota, performed a retrospective chart review on all patients who had a duodenal aspirate and culture over a 1-year period. In this study, 151 patients (22%) met the criteria for IBS after a comprehensive chart review. Abnormal aspirate counts (ie, bacterial count > 100,000 colony forming units/mL) were present in 6% of patients with IBS and in 11% of patients with complaints of bloating. Other medical conditions (eg, narcotic use, gastric cancer) were also associated with abnormal duodenal aspirates. The study authors concluded that on the basis of what many clinicians consider to be the best test to identify bacterial overgrowth -- duodenal aspiration and culture -- patients with IBS were not more likely to suffer from small intestinal bacterial overgrowth. Last, using the lactulose breath test, the study most commonly employed by clinicians to evaluate a patient who may have small intestinal bacterial overgrowth, Bratten and colleagues[34] found that patients with IBS were no more likely than healthy volunteers to have bacterial overgrowth. However, consistent with the findings of several other studies, patients with IBS and constipation were more likely to have elevated methane levels. The association between increased methane levels and constipation (is it causal or is it an epiphenomenon?) is not currently known. These studies point out that the precise relationship between small intestinal bacterial overgrowth and IBS remains unclear and that further studies are warranted to clarify this complex issue."http://www.medscape.com/viewarticle/547772There is of course a whole lot more to the CME.It is a very interesting article and has some new information on celiac and diagnosing IBS.


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## Moises

eric,Thanks for posting this. The reference to Weinstock suggests that the bifidobacter probiotic is in some kind of mixture with zinc. I wonder what that is.


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## Guest

kimberDo you have an update about your visit with Dr. Pimentel? How are you feeling now?Thanks, Janice


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## kimber

Hello everyone,I am so sorry it has taken me a while to post but I have been really busy doing this treatment stuff and honestly I've been trying not to live on the IBS website like I used to do. So the last update I gave was my visit with Pimentel and his treatment plan for me. So I did the higher dose of rafiximin just after christmas, and I had a little bit of side effects because the dose was so high, but i made it through, but was not seeing improvement, at that point I did another breath test, my third one, and it said the bacterial overgrowth was still there. Let me back up a minute. The first breath test I ever took last summer before any sibo treatment, my test results came back showing 70 ppm. When they test your breath they are testing for levels of hydrogen or methane in the breath test. My methane has always come back at 0, it's always been my hydrogen that is elevated. Anyway the test I take the home kit from Quintron says that anything over 20 ppm is a patient who has bacterial overgrowth,. So again my first test came back at 70ppm, very high. Then after the first round of rafiximin, the results came back at 59ppm. So after christmas and the high dose rafiximin the test came back at 43 ppm. So at that point I called pimentel and he called me back at home himself, he was really great and discussed our next option. He wanted me to do the vivonex for 14 days. SO I ordered the vivonex (about $400.00) I did the vivonex at the end of jan beginning of feb. Pimentel's nurse sent me the vivonex protocol information on how to take it, side effects, etc. So that vivonex was quite the experience. I was really worried about the taste after reading many other posts about it, I have a weak stomach and I was stressed about the taste, but when I got it, I made sure to order some flavor packets. Pimentel's office said that the favorite is orange/pineapple, and then the raspberry so I ordered both flavor packets. To be honest the taste wasn't so bad. Pimentel told me it is much better cold and that I could put it in the blender with ice to make a slushy. But for the first few days I alternated rasp. and the orange flavor and I drank it with just cold water, no ice. IT was tolerable but not fun and by day 5 I could hardly get it down, so then I tried to make a slushy, but even though it helped the taste, I couldn't drink it fast because it was so cold and slushy. You only have to mix each vivonex packet with 1 cup of water so it really isn't much to get down unless it is a slushy. SO then I tried something else. I took a shaker cup from my husband's protein shakes and put the vivonex and the water in there and shook it up until it was dissolved. Then I added big ice cubes to the shaker cup and shook it like a martini shaker and got the liquid cold, but not slushy. Then I drank it through a straw and this method was actually very tolerable. I finished the 14 days doing that method and it was fine. The coldness helps with the taste, but too slushy is too hard to get down. The straw helps too. Also during the 14 days I had diarrhea everyday, the first few days were the worst, and then it was tolerable diarrhea, but it was there all 14 days, but not a lot of cramping, just urgency. pimentel said to expect the diarrhea the first week and then the second week maybe some, but also maybe no stool at all. They tell you the first week is the hardest and that is true. By the second week my cravings for food got a lot better and my body adjusted better by week 2. So after the 14 days on day 15 I redid another breath test. Those results came back at 2ppm. Yes I said 2 ppm. Remember my first test was 70 ppm, then the second 59 ppm, then the third 43ppm, and then two weeks later the fourth and most recent after the vivonex came back at 2 ppm. And 20ppm and over is SIBO but anything under is not. Pimentel called and said"Well those numbers can't get much better, I think we got it" I was so excited, but wasn't feeling better yet. Pimentel then prescribed Zelnorm 2mg a day taken at bedtime. He said that I shouldn't expect to see any improvement for maybe another 10 days or so. He said my body had to readjust to eating food again after 14 days with no food, and also to adjust to the zelnorm. He said that a lot of patients call him the next week and say it didn't work and they don't feel any better. HE said this is to be expected. He said I will still have the bloating diarrhea gas, cramps etc until my body adjusts. He said if I didn't notice improvement long after that to call him again. SO he was right when I started eating food again and taking the zelnorm I felt no change at all. The first week was like I still had SIBO, and then the second week I felt a little better but not much. ALso my pharmacy couldn't get the 2 mg zelnorm in for a while so they sent me home with 6mg pills and told me to cut them into thirds. This was not fun since the pills are already tiny and I was not cutting them into equal parts, and I felt like my body wasn't adjusting to the med because each night I was taking a slightly different size pill. SO after the first 2 weeks, my pharmacy got in the 2 mg pills and I swithched over, after a week of that I started to notice a difference and my body started adjusting to the med dosage. So I noticed a little improvement in my symptoms just not a HUGE night and day difference. I went to see my local GI to update him on all the stuff going on and when I was there I told him that I feel like my mind is not catching up, and that my mind is still acting like I have IBS/SIBO I always check to make sure I know where bathrooms are make sure I always have my meds, etc. My doctor said that would take some time. He said my mind has learned how to live with IBS for 12 years. He said it is like if you lose your arm, your mind has to train itself how to live without an arm, and then if you get a prostetic arm your mind has to retrain itself how to live with your arm again. So he said my mind trained itself how to live with IBS, and after 12 years of that, it is going to take my mind sometime to retrain itself how to live again without IBS. He said your mind doesn't just realize overnight oh this might be gone now, it will take time, and during that time the mind gut reaction could maybe make my progress a little slower. THis made so much sense to me so I started trying to tell myself everyday that my body is getting healthier and stronger, and that seems to help. Also I've been praying for God to help to retrain my mind and help it catch up. So last week was week 3 after the vivonex and that is when I saw my local GI. So as of last week I was only seeing a little improvement not much. This week it has gotten even better. I have had a great 5 days, a little discomfort but not much and yesterday I even went shopping with my friend and her baby for the day. It was amazing. The Lord is definitly good!! I am not even close to 100% but I am hopeful. I know pimentel said to give it 10 days and it's been a month and I'm just starting to see good results, but there were a few variables for that, one I wasn't on the right dose of zelnorm for the first 2 weeks, just this week makes 2 weeks of actually being on the right dose. Also I have had this for 12 long years and my body is so tiny I think it might just take each body different time frames to adjust. So like I said I'm not close to 100% better, but I feel like the Lord is healing me and making me healthier and stronger each day. I truly believe that God gives wisdom to the doctors so that they can help us. I have tried EVERYTHING over these last 12 years and this is the first thing where I have seen any improvement. I know the bacteria level is way down to 2 ppm from the test results, so now I am praying GOd will continue to help my body to adjust more each day. I don't know what the future holds, and if it will come back, but I don't want to live my life by what if anymore, I just want to live my life with strength and courage. I trust that God will give me the strength that I need and I believe that he holds all of my tomorrows in his hand so why should I continue to worry when I'm in the best hands possible. So I just wanted to update all of you and tell you that I think Pimentel's stuff has helped me, and since it's still so early after my treatment, I don't know how much it will help me, but I definitly have noticed some improvent and a lot more just in recent days. Hopefully it will continue to get better with each day and if the bacteria comes back again I will try the Vivonex again depending on how well this helps me over the next few months. But definitly I recommend everyone atleast trying to see Pimentel or one of his associates and trying this method. I think he can definitly help alot of people. I will give another update in a month or so to let you know the improvement after another month. But YEAH, Thank you Lord for the improvement so far. I definitley have hope for my healthy future!!I will check the boards for questions once a week or so, but really feel free to email me directly with questions or concerns, I check my email everyday. That is kmramsey02###yahoo.com Thanks for reading my update I hope it helps some of you. Blessings,Kimber


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## kimber

Hello everyone,I wanted to let you all know that my bacteria has come back!! I did another breath test a few weeks ago and after only 5 weeks the bacteria came back, not as high as before but it came back. I called pimentel and he wanted to see me again so I went down to LA to see him again this week. They did another small bowel follow through and ran some blood tests. the follow through came back normal, but I don't have results for the blood tests yet. pimentel was surprised the bacteria came back so quickly, and said it definitley should not have done that, so he said that tells him something more is going on. So he wants to find out why it came back so quickly. He wants me to start taking a prescription pancreatic enzyme. He said it will take up to 4 weeks to see if it helps me. Then in 6 weeks he wants me to drive back down to see him again ( A 7 hour drive) at that point he said if the pancreatic enzymes are helping than that tells him what to look at next, and if they are not working then he wants to do another colonoscopy and upper endoscopy. Even though I've had them done with my local doc, he said that he wants to do them himself and see if anything was missed. So that is where I am at now, I'll try these enzymes and then in 6 weeks go down to see him and go from there. Let me know if you have any questions you can still email me directly at kmramsey02###yahoo.com. I will update the boards when I know more. Hope everyone had a good Easter. Take care.Blessings,Kimber


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## 17908

Let us know which enzymes he puts you on.Also . . . it is definitely important that the doctor doing all the analysis of your symptoms does the colonoscopy or has somebody he trusts do the colonoscopy. When I was being treated for colitis (before the IBS/SIBO stuff started), the GI's I was seeing were always complaining about the colonoscopy done by my local doctor. I think they just feel better about it if they do it themselves or have somebody they trust do it.


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## 22904

Inactive Account


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## 13777

kimber said:


> After I read your post I called his office and they told me they don't know when he will be taking new patients again, but he is referring people to three other doctors who work with him at Cedar Sinai. They gave me the info. The doctors that Dr pimetel recommends seeing are. . .
> 
> *Dr. Gil Melmed 310-652-8031
> *Dr. Siamak Tabib 310-652-4472
> *Dr. Ted Stine 310-385-3506
> 
> There is their info, pimentel's office staff told me that pimentel highly recommends these three doctors. So maybe you could get in to see one of them. Good luck to you!


Dr Stein is my GI. He's great


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## kimber

Hello everyone ~First of ALL, I am SO sorry that I haven't updated this in a long time. I have actually been keeping quite a few people updated through my personal email, those who seemed interested in the outcome have been emailing me directly, but I recently had a message from someone on these boards who brought to my attention that it's been a while since I posted ~ so thank you for reminding me to post again! Anyway, A LOT has happened with my Pimentel visits. The last I posted Pimentel had run more tests because the bacteria had come back and he thought there was something more than just regular SIBO. So to try and make a LONG story short, this is what happened. My last post Pimentel had just done a small bowel follow through, then he sent me home with pancreatic enzymes. After a few months I still had no change so he wanted to see me again for an extended visit. So summer of 2007 we went to LA for 2 weeks and I had a test done almost every day. He re-ran almost every test that I have had over the last 12 years. We did so many tests, including another colonoscopy, another barium enema, another breath test, many blood tests and many other lab tests, and I did a new test where they put a tube down my nose all the way down to my stomach. I had to leave this tube in my nose for 6 hours and be awake. It was not a fun test, my husband was allowed to stay with me, but it was so gagging having this tube down your nose, pass your throat and go to your stomach for 6 hours. Every time I moved the tube gagged me, and then after 4 hours of it, they had me try to eat a sandwhich with the tubing in. It was not fun at all, but I made it through. I guess they were testing my cleansing waves with this test. The first 4 hours they were testing my body's cleansing waves during a time of fasting, and then after I ate the sandwhich they were testing my body's cleansing waves after eating. The tube to my nose was connected to a monitor and was also connected to a water pump thing, that kept flushing water into my system, this was not fun because I had to keep going to the bathroom because my bladder kept getting full, and moving with the tube to the bathroom, really gagging. So anyway he did several tests over the two week stay and at the end of the two weeks he said that he found a few things. First of all he said that the cleansing wave test showed him that my body was not doing it's natural cleansing waves the way that it should be. He thinks that is what was causing the bacteria to build up. My breath test did come back showing much less bacteria, so I had managed somehow to get rid of the SIBO. Also when he did my colonoscopy he said that he actually found that I have Crohn's disease. Even though I have been tested for Crohn's during so many other colonoscopy's he said it is very common for people to suffer from Crohn's disease for many years, like 10-12 years and the colonoscopy's come back normal, and then all of a sudden 10-12 years later they start seeing signs of it in the colonoscopy's. So even though my body has been suffering the Crohn's symptoms for the last 12 years, there was no physical evidence in my colon, but now it was starting to show it. he said he found 30-50 ulcers in my colonoscopy and he said some of my colon lining was beginning to thicken a little bit. He did say that the lab results don't show that I have Crohn's which he thought was so strange because he says that what he saw during my colonoscopy seems to be Crohns. So he said he thinks it is Crohns and he wants to try treat that.So basically he wanted to try and treat me for Crohn's disease as well as get my cleansing waves normal again. He said if the treatment for Crohn's worked then the cleansing waves should start to work on their own again. So I have been trying different Crohn's medications for the last year and a half. At first none of the medications were working and I tried a lot of different medications over the last year and a half, and then he put me on Asacol, and the first dosage didn't work, then he doubled the dosage, and by golly I started to feel a little better. I have been on this higher dose of Asacol for about 6 months now and have had a much better 6 months. it's not perfect, but I do feel better. I have less pain and a more normal bowel schedule, but I still have some issues that Pimentel says are normal side effects to the medication. I am still also taking the pancreatic enzymes. I have been to see Pimentel a few times since my visit in the summer of 07, but they have been follow up visits. I just spoke to Pimentel by email this week and he said he is pleased with the treatment so far. I have been able to eat more foods and leave the house a lot more, we even went camping this past summer!!!! Also I have gained most of my weight back. i had dropped down to 82 pounds and am now back to 100 pounds, so that is really good. I myself am happy with the new medication, but I was hoping there would be something to help a bit more than this one does, but Pimentel says our next option is much heavier treatments, like the steroid treatments, and I'm not sure I want to try those yet since I've heard such horror stories about the side effects. Pimentel wants to have another appt, in January to see what we want to do. He has said I can continue on the Asacol for as long as I wish to, or we can look into other options to try and see if we can find even better relief of my symptoms. So basically that is where I am at today. It's been a long road, but the Lord has been guiding me every step of the way and I am thankful for the start of healing that he is giving my body. I keep putting my hope in him because I know he will guide my path. I encourage anyone who suffers from Sibo, Crohns, IBS, etc to keep trying to find help with the doctors. Don't give up on finding some relief, even if it takes years to find answers, I know one day they will find the answers and help for all of us with GI problems. If you have any questions please feel free to send me a message anytime, and again I apologize for taking so long to reply again. I hope everyone has a wonderful Holiday Season!!Kimber


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## idkwia

Hello KimberDo you have an update from your visit to Pimentel in January please?Steve


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