# my success... interrupted



## 22904 (Aug 5, 2006)

Inactive Account


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## 23173 (Aug 6, 2006)

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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## 15693 (May 4, 2005)

Please keep us posted on your results from the Pimental office visit. I am very interested! I have a very similar story and tried the Rifaximen for ten days with no results. I too want to try it for at leatst a month. Anyway good luck!!


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## 14438 (Sep 8, 2006)

It's too bad I didn't log on sooner, as 9/12 is fast approaching, but I had the breath test taken ### Mt. Sinai in NYC just last mo. It's a much quicker trip for you, if you change your mind about CA. The doctor is Dr. Jennifer Christie ### 212-241-4299. Dr. Pimentel is from the same hospital, so what all the other GIs refused to do (like the breath test & going on Rifaximin) they will do. In fact, the machine is in her office. Of course I've been trying to get the results ever since & have been playing tlelphone tag w/her office, so in the meantime I started taking the probiotic Bifantis 35624 (called Align by Proctor & Gamble)which she had said helped some of her patients. Good luck.


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## overitnow (Nov 25, 2001)

I am pleased you have found a treatment. It's a b*tch what you are going through to get it.IBS-Diarrhea can be caused by any number of conditions, one of which is SIBO. I am a long way from being convinced that this is what we are all suffering from.I hope you find some way to treat this that doesn't involve moving to LA.Cheers,Mark


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## Moises (May 20, 2000)

> quote:Originally posted by joanne g.:It's too bad I didn't log on sooner, as 9/12 is fast approaching, but I had the breath test taken ### Mt. Sinai in NYC just last mo. It's a much quicker trip for you, if you change your mind about CA. The doctor is Dr. Jennifer Christie ### 212-241-4299. Dr. Pimentel is from the same hospital, so what all the other GIs refused to do (like the breath test & going on Rifaximin) they will do. In fact, the machine is in her office. Of course I've been trying to get the results ever since & have been playing tlelphone tag w/her office, so in the meantime I started taking the probiotic Bifantis 35624 (called Align by Proctor & Gamble)which she had said helped some of her patients. Good luck.


Thanks for the info Joanne about New York doctors. I will try Xifaxan first without a breath test. If it proves useful I will try to see Dr. Christie if she's in my insurance plan.I just got Pimentel's book yesterday. I have a family member who gave me a prescription for Xifaxan last week. But my health insurance lists this as a "limited quantity" drug. I had my MD write me a prescription for 2-200 mg tablets three times a day for 10 days (60 tablets) with three refills. The pharmacy gave me a bottle with 9 tablets, with 3 refills.I will accumulate 36 pills, then get another prescription until I have 60. Pimentel mentions in his book that Xifaxan use for IBS is off-label, so the insurance companies are not covering it.I had read a lot on this board and more generally on the net about Pimentel, including excerpts of all the good stuff on Amazon. So "reading" the book did not take very long. There was very little in there that was new to me. What I did get from the book that I was not clear on before was the concept of cleansing waves. If the Xifaxan works I will get a prescription for Erythromycin 50 mg a day taken before bedtime to regulate the cleansing waves that supposedly clear the bacteria out of the small intestine.My first impressions of the book were, if this is as good as he says, my 40-year quest is over. But I know that few on this forum have actually gone into remission following some version of Pimentel's protocol.What got me very excited about Pimentel's book was that someone was actually talking to my symptoms, which I have never seen before. He talks of the Manning criteria for IBS that preceded the Rome criteria. The Manning criteria, which he claims have more scientific validation than Rome, "showed that bloating and abdominal distension were sigificant features of IBS."I had diarrhea from my pre-teen years till my forties. Ten bowel movements in a day were typical. But I never viewed diarrhea as a significant problem. What bothered me most from my late teens on was eructation primarily, flatulence and distension secondarily, and diarrhea tertiarily. Once I went on a low-carb diet, my diarrhea was largely under control but my eructation, flatulence, and distension were still a problem.Others have commented on and contrasted Elaine Gottschall's Specific Carbohydrate Diet (SCD) to Pimentel's Protocol (PP). I first learned of the Elemental Diet through Gottschall's writings. Her SCD purports to be a natural method of going on an Elemental Diet. I went on the SCD many years back when Gottschall's book was called Food and the Gut Reaction. I stayed on her diet for months and had no improvement. But I was very grateful to her because her diet forced me to start eating meat. I realized on her diet that was craving the allowable carbs and that was giving me diarrhea and mucus in my stool. I then started experimenting with eliminating sweets (Gottschall allowed honey) and I at least lost the diarrhea.What I find interesting is that both Gottschall and Pimentel essentially endorse Vivonex (elemental diet) as an IBS cure. But Gottschall recommends doing it naturally by elminating disaccharides and polysaccharides and consuming only monosaccharides (along with protein and fat). I did the SCD for months and had no improvement, so I wonder if that means that Vivonex would not help me.What I also find interesting is that Pimentel endorses Vivonex, yet you would have to read his book very carefully (and then read the medical literature) to realize that you might have a better chance for a cure by using Vivonex than by following his Xifaxan/Neomycin protocol. I have nothing but the highest respect for Pimentel and all the help he has provided us who suffer from IBS. But I do have to ask the question: why does he give more prominence to Xifaxan than to Vivonex?The answer might be innocent: it is easier to get people to take 2 pills three times a day than to drink some foul-smelling, bad-tasting mixture. Or the answer might be more sinister: Pimentel and Salix (the manufacturer of Xifaxan) have a symbiotic relationship--he provides studies to show that their products are effective and they finance his work.I know that I would like to try Xifaxan before trying Vivonex because I have been eating low-carb for years and from what I've seen Vivonex is a very high-carb diet. I had a blood clot about 10 years ago. I know that radical shifts in the amount of carbs one consumes may induce blood clots. So I wouldn't take Vivonex without first increasing my carb intake gradually over a number of weeks, if not months.Intuition, I am glad you found something that helped you. Since Pimentel really seems to have nailed your diagnosis, why not try Vivonex? It costs a few hundred US$ but it sure beats flying to LA; it probably costs less than multiple courses of Xifaxan, and you don't need an MD to get it. And, it seems, that the chances for IBS remission are significantly higher with Vivonex than with Xifaxan/Neomycin. At least the numbers Pimentel gives in his book suggest that Vivonex is superior in effecting a cure. In the meantime, your Kafkaesque bureaucratic saddens me immensely. Human suffering is sad enough. But senseless human suffering brought about by the fatuity of others is infuriating.


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## 22904 (Aug 5, 2006)

Inactive Account


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## Moises (May 20, 2000)

> quote:Originally posted by joanne g.:It's too bad I didn't log on sooner, as 9/12 is fast approaching, but I had the breath test taken ### Mt. Sinai in NYC just last mo. It's a much quicker trip for you, if you change your mind about CA. The doctor is Dr. Jennifer Christie ### 212-241-4299. Dr. Pimentel is from the same hospital, so what all the other GIs refused to do (like the breath test & going on Rifaximin) they will do. In fact, the machine is in her office. Of course I've been trying to get the results ever since & have been playing tlelphone tag w/her office, so in the meantime I started taking the probiotic Bifantis 35624 (called Align by Proctor & Gamble)which she had said helped some of her patients. Good luck.


For anyone else in the New York area: Christie was not in my insurance plan. So I have made an appointment with an other GI who does the breath test. His name is Starpoli. In the meantime, my insurance company only lets me get 9 pills of Xifaxan at a time. So I'll probably need the next month to accumulate 60 pills. But I want to see the breath test results before I take the pills.I'll use the next month to start increasing my carbohydrate intake. If the pills don't work, I'll try Vivonex, which has a very high carb ratio compared to my current low-carb diet. I'll also use the next month to wean myself off my many supplements with pharmaceutical glaze, starch, or zein. This way if I have to do the Vivonex diet I want have the supplements muddying the results.


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## gilly (Feb 5, 2001)

Hi Moises.There was a lot of discussion about vivonex plus on one thread and it seems that it tastes so bad that noone could stand it for 2 weeks.You can get a trial pack apparently which may be a good idea to see if you could drink it.One person said they could only drink it with all the windows open the smell was so bad!! I laughed reading that!Pity, since it would otherwise be a good solution according to Pimentels book.Good luck.I also feel that lack of good bacteria may also contribute to the problem,perhaps killed off by antibiotics,I particularly blame flagyl,but I dont think probiotics help.Gilly


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## Moises (May 20, 2000)

> quote:Originally posted by gilly:Hi Moises.There was a lot of discussion about vivonex plus on one thread and it seems that it tastes so bad that noone could stand it for 2 weeks.You can get a trial pack apparently which may be a good idea to see if you could drink it.One person said they could only drink it with all the windows open the smell was so bad!! I laughed reading that!Pity, since it would otherwise be a good solution according to Pimentels book.Good luck.I also feel that lack of good bacteria may also contribute to the problem,perhaps killed off by antibiotics,I particularly blame flagyl,but I dont think probiotics help.Gilly


Gilly,Thanks for the suggestion. I thought I read all the Vivonex threads. I don't recall the trial pack. I'll do another search.I have read a lot about the dangers of Aspartame, which is used to flavor the Vivonex. Since Aspartame is used as a sweetener, I wonder why the manufacturer, or the user, can't just flavor it with glucose cubes instead of the Aspartame. My understanding is that glucose is sweet and can be absorbed by the intestine without being broken down further.I know it's easy for me to sit here in relative comfort and make strong statements but if I were told that 2 or 3 weeks of drinking something foul would end the discomfort that I have endured for almost 40 years, I would do a rapid calculation and go for it. I know one member of this forum became seriously ill with a fever while trying to get work done at school. So he stopped the Vivonex Plus. I can understand why he quit the regimen. Others have had excruciating headaches. I can understand why they quit. I personally would start with the Vivonex instead of the antibiotics, but I have some serious health concerns that make me very cautious about radically changing my diet quickly. If the antibiotics don't work I will spend a month or more weaning myself from red yeast rice, which is a natural substance that acts as a statin drug. I will also wean myself from Nattokinase which is also a natural substance which acts as a blood thinner. I had a blood clot in 1998. These can prove fatal and I don't want to induce another one. I also don't want to be taking a lot of supplements while taking vivonex because then if the Vivonex fails I won't know if it was the Vivonex that failed or the supplements that sabotaged the Vivonex. I still would take Vitamin C, as ascorbic acid with no fillers and additives.There is a great book called _Life Without Bread_. The author warns that low carbohydrate diets can induce blood clots if they are entered into too quickly. Any major dietary change, he claims, can induce blood clots. I now eat a low-carb diet, and Vivonex Plus is something like 80% carb, so before I would start a Vivonex Plus regime I would need to gradually increase the carbohydrate proportion of my daily diet (something I am very reluctant to do because I know that high-carb diets, even if I eat only monosaccharide carbs, give me diarrhea).OK, let me look for those Vivonex Plus trial packs.Thanks.


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## gilly (Feb 5, 2001)

Hi moises again, No I dont think you could have glucose because it still feeds the bacteria which you're trying to starve out.I agree it sounds simple to do but actually I think you could feel terrible while doing it.No B.M apparently the whole time which I think could be very bad for you,also especially with your health probs you may lose weight.Do you have a doc who would help u throught it?I know thats unlikely,docs here havent even heard of Pimentel let alone his protocol!Hope you have success with it if you try.


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## Moises (May 20, 2000)

> quote:Originally posted by gilly:Hi moises again, No I dont think you could have glucose because it still feeds the bacteria which you're trying to starve out.I agree it sounds simple to do but actually I think you could feel terrible while doing it.No B.M apparently the whole time which I think could be very bad for you,also especially with your health probs you may lose weight.Do you have a doc who would help u throught it?I know thats unlikely,docs here havent even heard of Pimentel let alone his protocol!Hope you have success with it if you try.


Gilly,Thanks for your encouraging words. Since I am worried about inducing a potentially fatal blood clot with Vivonex, I will try the Xifaxan first. I am seeing a gastroenterologist in a few weeks. I know he uses quintron for breath tests. I don't know how much he knows about Pimentel. I don't know if the GI doc will breath test me right away or force me to do a bunch of other tests that other GIs already have done to me.Maybe 10 days on Xifaxan and I will be completely fixed. I can always hope.


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## cynthia (May 9, 2006)

Moises,I'm very interested (for my son) in the doctor you're planning on seeing - Starpoli. I'm also in New York and he's also on my insurance plan. I'm not sure if he would see my son because gastroenterologists will often not see anyone under the age of 18 and my son is only 14. What do you know about him? When is your appointment?Thanks, Cynthia


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## cynthia (May 9, 2006)

By the way, my insurance also limited my prescription of xifaxan to 9 pills!


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## Moises (May 20, 2000)

> quote:Originally posted by cynthia:Moises,I'm very interested (for my son) in the doctor you're planning on seeing - Starpoli. I'm also in New York and he's also on my insurance plan. I'm not sure if he would see my son because gastroenterologists will often not see anyone under the age of 18 and my son is only 14. What do you know about him? When is your appointment?Thanks, Cynthia


Cynthia,I found Starpoli doing a Google on "breath test" or something like that. I don't remember exactly. He had a website. It says he specializes in GERD but he does breath tests for IBS. I e-mailed him a question about the breath test. His office said it was Quintron.I got the Xifaxan script by other means but it would be cool to see if the hydrogen breath test confirms any symptomatic changes or lack thereof. I have accumulated 36 Xifaxan. I will get another script for 36. Then I will start taking them so that I finish the course before I see him.I don't know anything about him. I have the Oxford Liberty plan so I can see a specialist without prior approval from a gatekeeper primary care provider.You said you were interested in having your son see the GI doc but you had the script for Xifaxan. Do both you and your son have IBS or is the Xifaxan for him as well?


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## cynthia (May 9, 2006)

Moises,The Xifaxan prescription was for my son who has SIBO. By the way, we have the same insurance as you. As I said, a major obstacle for us is that there are only certain GI doctors who will treat kids under the age of 18 (none of which are near us). If Dr. Starpoli seems like he might be helpful, I would try to convince him to see my son.When is your appointment for? Have you tried any other antibiotics before?


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## Moises (May 20, 2000)

> quote:Originally posted by cynthia:Moises,The Xifaxan prescription was for my son who has SIBO. By the way, we have the same insurance as you. As I said, a major obstacle for us is that there are only certain GI doctors who will treat kids under the age of 18 (none of which are near us). If Dr. Starpoli seems like he might be helpful, I would try to convince him to see my son.When is your appointment for? Have you tried any other antibiotics before?


My appointment's October 5.No, I've never taken prescription antibiotics for my digestive symptoms before. I will take the Xifaxan prior to seeing Dr. Starpoli. I wish you the best for your son.


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## Moises (May 20, 2000)

> quote:Originally posted by gilly:No I dont think you could have glucose because it still feeds the bacteria which you're trying to starve out.


Gilly,This is contrary to everything I understand about SIBO. Pimentel and Gottschall disagree on many things: Gottschall prohibits all starches while Pimentel allows white flour, rice, and potatoes; Gottschall allows fructose while Pimentel limits it, etc. But they both agree that glucose is the fundamental unit of carbohydrates and does not need to be broken down further to be digested. Pimentel says that it is the fundamental component of an elemental diet and that it is absorbed withing the first couple of feet of the small intestine. So, glucose, from what I've read, is the largest component of an elemental diet.


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## cynthia (May 9, 2006)

Moises, I so hope the Xifaxan works for you. It's too bad that one has to hoard the pills - but if it works, it was all worth it. Please let us know how you do on them.


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## gilly (Feb 5, 2001)

OOps well I dont know just guessing.Why wouldnt the elemental formula have glucose? If glucose is used in some tests to show SIBO then it must be feeding the bacteria and they are producing the hydrogen.So I'm confused.Will look it up.Gilly


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## Moises (May 20, 2000)

> quote:Originally posted by gilly:OOps well I dont know just guessing.Why wouldnt the elemental formula have glucose? If glucose is used in some tests to show SIBO then it must be feeding the bacteria and they are producing the hydrogen.So I'm confused.Will look it up.Gilly


I too am confused. I think this is why Pimentel does not recommend glucose breath tests.Gottschall says the main component of an elemental diet is glucose. But the main componenet of Vivonex Plus is listed as maltodextrin. From what I have found out thus far, maltodextrin links glucose (or dextrose) monosaccharides with very weak hydrogen bonds that are very easily broken with minimal digestion. And then the glucose is absorbed in the small intestine, close to the stomach, without proceeeding down farther in the small intestine where it could be fermented by a bacterial overgrowth.


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## Moises (May 20, 2000)

> quote:Originally posted by gilly:OOps well I dont know just guessing.Why wouldnt the elemental formula have glucose? If glucose is used in some tests to show SIBO then it must be feeding the bacteria and they are producing the hydrogen.So I'm confused.Will look it up.Gilly


Pimentel on breath tests, page 60:


> quote: The test that we principally use at Cedars-Sinai is the lactulose breath test, because lactulose is the only sugar not absorbed by the body, meaning that it is able to travel all the way thorugh the small intestine, which is approximately 15 feet long. By contrast, glucose, the body's principal energy source, is completely absorbed by the body within the first one or two feet of the gastrointestinal tract.


 Pimentel on elemental diets, page 76:


> quote: Vivonex consists of completely predigested proteins, fats, and carbohydrates. Instead of proteins, it contains amino acids, which are the building blocks of protein. It also contains the fatty acids that the body needs, as well as carbohydrates in the form of glucose, a simple sugar that is so readily absorbed by humans that there is little left for the gut bacteria to feed on.


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## 14438 (Sep 8, 2006)

Just a note to say that I started on Xifaxin yesterday ### 1200 mg for 10 days (60 pills) from my Dr. ### Mt. Sinai. The hydrogen level was not that elevated, but she decided to go ahead w/the antibiotics. Will keep you posted on my progress....


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## 14438 (Sep 8, 2006)

Nothing has gotten better or worse...per Moises-- & my bad experience-avoid salad!!!(3) days on X to go...


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## 14438 (Sep 8, 2006)

(4) days off X & back on the probiotic; had to use a laxative Sat nite to take a trip on Mon., so Tues. was a good day too; but yesterday & today--horrors!!; couldn't leave the house today 'til 4:30; even after taking imoduim, still had to find a public restrm; had a BM almost every hr since 7am (it's 11pm now); some trips were false alarms--just lots of gas & bloating--but no diarrhea!!! Not sure if I should be happy or sad...according to my shrink I'm sad & worried--so he put me on Celexa.


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