# Results of my visit at Cedar Sinai



## Pete (Jan 20, 2000)

Well I just flew back to NY from my visit with Dr. Lin in LA. For the newbies my symptoms are bloating, burping, flatulence, reflux, diarrhea about once every 2 or 3 weeks, and bad taste in the back of my mouth. I asked a few docs about the possibility of bacterial overgrowth and they all said no way. The only diagnosis I have had is that my problem is that my stomach does not empty fast enough. Needless to say I was very impressed with Dr. Lin. I did the breath test and was infact positive for bacterial overgrowth of the small intestine. His treatment plan has 2 phases. First phase is to eradicate the bacteria with a 10 day dose of neomycin. Then I shall have another breath test to see if the antibiotic worked. There is a 60% chance it should. If I still have the overgrowth, I will be given additional antibiotics until the small intestine is sterile. At that point he claims my symptoms may be gone or should be significantly reduced. Then comes the hard part which is trying to determine a treatment plan to not allow this overgrowth to come back. With no treatment the overgrowth will return in about 60 days. We will then do extensive motility testing to see exactly where the problem lies so we can figure out the proper treatment. For example I had a gastric emptying study that showed my stomach empties much too slow. I later had the same test on a drug called propulsid(a drug to help the stomach empty quicker) and my emptying time was normal. So the drug worked but my syptoms didn't improve. Dr. Lin feels that it is very likely these drugs don't make you feel better because nothing is being done to kill the overgrowth. So from what I understand, these different drugs may be much more effective once the bacteria are gone. This overgrowth of bacteria is very likely to be involved in CFS, fibromyalgia, GERD, and IBS. I think they are onto something big at this hospital. I will keep everyone informed on how I progress. Any opinions from the experts on whether this is logical? One other thing is that he told me that if you have overgrowth of the small intestine, then it is possible that probiotics do more harm than good. I guess if they help you, you should keep taking them. If you haven't noticed a difference or have gotten worse, maybe probiotics should be stopped.Pete


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## eric (Jul 8, 1999)

Pete, I certainly find it interesting and wish you the best of luck with it and hope your symptoms may be gone or significally reduced.------------------ http://www.ibshealth.com/ www.ibsaudioprogram.com


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## jenjen (Nov 30, 2000)

pete,thank you for sharing. your situation is very interesting. i'd like to hear how things develop. i hope the treatment works for you.-jen


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## luckylou (Sep 22, 1999)

Pete, thank's for the very interesting update. Please keep us informed of your progress.


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## Stay Strong (Nov 22, 1999)

Glad to hear your taking a step in the right direction. How did you get in contact with Dr.Lin? and are they currently looking for more people to test. I live in Las Vegas, NV and would be more than willing to go to LA for testing.


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## Guest (Jan 26, 2001)

Thanks for your info. about Cedars-Sinai. I have an appointment on Feb. 1. After reading your update I feel optimistic about it because our symptoms seem similar. Like you, my doctors have not been receptive to the possibility of bacterial overgrowth--my GI even told me not to "waste my time" and that "anything can get posted over the Internet." Needless to say, he isn't my GI anymore.I would like your advice on a matter. I have an appointment to have the breath test done only--not to see either Dr. Pimentel or Dr. Lin because they are booked up until April and I didn't want to wait that long. Do you think this is a mistake? My PCP is receiving the results and read the article, and Dr. Pimentel recommended he handle at least the antibiotic-stage of the treatment (assuming that I test positive). What are your thoughts on this?Best of luck in your treatment!


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## beach (May 12, 2000)

I am very interested in seeing this doctor as well - could you tell me his phone number - I am also from New York.But, the thing that I'm concerned about is why he gave you propulcid. That drug was taken off the market because it was dangerous to the heart. But, I am interested in knowing more about getting this test...so if you can give me any address or phone number. I would appreciate it.


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## Island girl (Jul 24, 2000)

It's great of you to share this info with everyone, Pete. Could you(or anyone) explain the reasoning behind this:"One other thing is that he told me that if you have overgrowth of the small intestine, then it is possible that probiotics do more harm than good."Thanks


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## SteveE (Jan 7, 1999)

Interesting stuff, Pete! I have a couple of questions:Am I understanding the first part of your post correctly in that you mean to say bad taste has nothing to do with bacterial overgrowth? Did they explain why not or what it might be?Also, did they explain why they thought probiotics might be bad for overgrowth in the small intestine? I have never found any benefit of taking them, and I've tried every type! Sometimes they even seemed to make me slightly worse.PLEASE keep us posted! Thanks!Steve


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## Kathleen M. (Nov 16, 1999)

Steve,I think that the logic runs that if you have conditions that allow bacteria to grow in the small intestine (it is supposed to be sterile) then adding more bacteria that are known to colonize humans might not be useful.Now I dunno if anyone knows if the probiotics will colonize the small intestine even under conditions when other bacteria are colonizing the small intestine.One thing I don't understand, nor know if anyone really understands, is the detailed mechanism that causes the small intestine to be invaded. I've heard a few things about motility, but I dunno how solid any theory about this is. I doubt that a course or two of antibiotics fixes whatever it is that allowed the bacteria to get into the small intestine. Now in some people it might be some sort of unusual thing that occured (some type of illness or other particular exposure) that makes it a one time or unlikely to happen again thing, but it might be some chronic problem, so every so often the small intestine needs to be cleared out again and until the underlying problem is found this is still just treating a symptom and not really a cure.I've heard a number of people over the years who say that everytime they have antibiotics (for other things) they feel great and then in a week or two it comes back. Those people sound like they may be someone who needs a hydrogen breath test. FWIW there is a pretty good balance between the people who feel good on antibiotics and the people who get much worse every time they take antibiotics, so you wanna be sure there is a problem before taking themK.[This message has been edited by kmottus (edited 01-26-2001).]


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## Pete (Jan 20, 2000)

Steve,No what I said is that Dr. Lin feels that the bad taste in the back of my mouth is from the overgrowth. He also took a picture of my tongue to see if the white coating is gone after the treatment. He feels this too may be due to overgrowth. The reason probiotics may be bad is that the same mechanism that allows bacteria to get in the small intestine would allow probiotics to get up there to. The small intestine is suppose to be sterile. I guess the tricky part to all of this is how to keep the small intestine sterile without being on antibiotics all of the time. Right now the antibiotic is killing my stomach but he said that this is normal for the first five days since the bugs don't want to die. I know they are booked for a long time. I got lucky because there was a cancellation. Beach,I was on propulsid before it was pulled. This was information I told the doc from the past.


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## Guest (Jan 26, 2001)

Has Cedar-Sinai said anything about what they are doing for those that test negative, or the one's that don't get better after the meds?


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## LUCIA (Nov 1, 2000)

HI EVERYBODY. If you are interested in participating in the GI Motility Program, lactulose hydrogen breath test as PETE did. The phone number is 310-423-3792. You will reach the Cedar-sinai research study dept. You can also e-mail Sandy Park for more info on this study. Sandy.Park###cshs.org------------------


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## flux (Dec 13, 1998)

> quote:I did the breath test and was infact positive for bacterial overgrowth of the small intestine. His treatment plan has 2 phases. First phase is to eradicate the bacteria with a 10 day dose of neomycin. Then I shall have another breath test to see if the antibiotic worked. There is a 60% chance it should. If I still have the overgrowth, I will be given additional antibiotics until the small intestine is sterile. At that point he claims my symptoms may be gone or should be significantly reduced.


Well, you could probably guess I'm not that impressed with this diagnosis or approach.


> quote:We will then do extensive motility testing to see exactly where the problem lies so we can figure out the proper treatment.


This seems backwards doesn't it? Load your gut with antibiotics to treat something you may not have after all, only then to do more testing to figure out what you do have and finally determine the proper treatment.Wouldn't it make more sense to do that step *first*?


> quote:because nothing is being done to kill the overgrowth.


Assuming you have overgrowth, why won't this help? What does this doctor think is causing the overgrowth?


> quote:This overgrowth of bacteria is very likely to be involved in CFS, fibromyalgia, GERD, and IBS.


Just when I was warming to the notion of Candida.


> quote: One other thing is that he told me that if you have overgrowth of the small intestine, then it is possible that probiotics do more harm than good.


This Dr. Lin got right.[This message has been edited by flux (edited 01-26-2001).]


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## Pete (Jan 20, 2000)

Flux,What do you mean assuming I might have it? I do have it via a breath test. His point is that other treatments may not work because the overgrowth has to be taken care of first. His study is not like candida. It is a very respectable hospital and has been testing this for years. Their data is pretty impressive. I guess we will see shall see with me being the guinea pig. He also said that studies show most IBSers have more gas then controls. This is directly opposite to what you say studies show. If ibsers do have more gas, it has to be coming from somewhere(meaning bacterial overgrowth)


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## flux (Dec 13, 1998)

> quote:I do have it via a breath test.


Ask how many of his patients don't have it.


> quote:His point is that other treatments may not work because the overgrowth has to be taken care of first.


That logic fails me. There is hint that best treatment for overgrowth, should it really exist, is to treat the cause. Only cause we know for sure on is the one's MMCs are out of whack. But wasn't your antroduodenal manometry study normal? Were all the phases of the MMCs seen? Did you convert to fed state after you ate? Why doesn't this doctor redo this potentially more informative test *FIRST* and then decide on therapy.(Of course, it wouldn't hurt to try to confirm the apparent overgrowth.)


> quote:He also said that studies show most IBSers have more gas then controls.


There is only one study I know about says this. But I don't know how to read their measurements. Also, it can't reproduced anywhere else because no one else has a human-sized gas-collecting chamber.


> quote:If ibsers do have more gas, it has to be coming from somewhere(meaning bacterial overgrowth)


For now, I'm stuck at the "if".


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## Pete (Jan 20, 2000)

Flux,He does want to do repeat manometry studies when I return. For now though he want to eradicate the bacteria. As far as this condition existing, he claims they did many breath tests on healthy controls and none of them had the overgrowth. 70+% of ibsers do have it. I have a question for you. What does he mean that neomycin does not get absorbed? He claims that candida overgrowth would not be a problem since this antibiotic doesn't get absorbed.


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## SteveE (Jan 7, 1999)

Back to this tongue thing for a second...why not culture it or stick it under a scope to see what it actually is first?In case I wasn't clear about this before, I have the tongue thing to various degrees too. It's sort-of yellowish-white sometimes is accompanied by a sour taste.Incidentally, that and all my other symptoms disappeared completely during a week-long course of tetracycline once. A week later, I was back to my normal icky self. I begged the doctor for another round of it. Eventually he caved, but the next time it did no good whatsoever. Don't know if the first round was a placebo effect or if the bacteria it was working on became resistant. But it was on glorious week. I tear-up remembering how good I felt and how disappointed I was when I realized that the nightmare hadn't ended afterall.


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## flux (Dec 13, 1998)

> quote:he claims they did many breath tests on healthy controls and none of them had the overgrowth. 70+% of ibsers do have it. I have a question for you.


I'll be looking forward to its being put on paper.


> quote:What does he mean that neomycin does not get absorbed?


Just what it says. It doesn't get into the body all that well. Some drugs mostly are like that; they just pass on through. But it can rarely cause inner ear side effects.[quote[He claims that candida overgrowth would not be a problem since this antibiotic doesn't get absorbed.[/quote]I'm not sure why he is connecting that with absorption unless he's referring to thrush.


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## Stay Strong (Nov 22, 1999)

Are there different effects of antibiotics. I took tetracycline for acne 8 years ago and to this day I blame it for causing my IBS. I suffered from extreme pain while on it and for at least a month following it. What's the connection?


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## luckylou (Sep 22, 1999)

Bump for DC


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## Guest (Jan 28, 2001)

Interesting post. Of course, I really don't see the connection. I think most people with IBS have taken some type of antibiotic (aren't they all about the same). I took one type some time ago and if anything it made me very sick and I didn't experience any relief afterwards. I also took some stomach emptying drug too (probably Propulsid before they took it off the market) but it worked TOO well. Anyway, I hope whatever they're doing works and doesn't cause worse symptoms. I guess since there is an overgrowth, taking all those antibiotics may not hurt you?


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## Pete (Jan 20, 2000)

Lawstudent,My doc at Cedar Sinai says that neomycin is the antibiotic that he is having success with. I too have tried other antibiotics and they have only made me worse. So far the neomycin made me worse originally but now on day 5 I am seeing improvement. My intestinal gas is gone which is a miracle for me. My upper GI problems so far remain the same.


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## Guest (Jan 29, 2001)

Could the problem be that it is the wrong type of bacteria inhabiting the small intestine, rather than just any at all?I mean, its a known fact that newborns ingest ranges of probiotic bacteria from day 1 from breast feeding, and one would think that these would easily colonise the small intestine since the acid-production cells of the stomach and other digestive organs are not fully developed (obviously this changes with age, but at what point does the small intestine become 'sterile'?).Also, if an overgrowth of bacteria is feasable, is it known what are the likely species of bacteria responsible for producing the hydrogen? And, if lactobacillus probiotics do not produce hydrogen (I remember from a previous Flux post), what is the problem with them existing in the small-intestine churning out lactic-acid in an already acidic environment? BTW. Thanks Pete for sharing your experience... ZD.


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## flux (Dec 13, 1998)

> quote:if an overgrowth of bacteria is feasable, is it known what are the likely species of bacteria responsible for producing the hydrogen? And, if lactobacillus probiotics do not produce hydrogen (I remember from a previous Flux post), what is the problem with them existing in the small-intestine churning out lactic-acid in an already acidic environment?


See http://www.ibsgroup.org/ubb/Forum1/HTML/017067.html Regarding lactobacillus and hydrogen, updated information: one article says at least one species of Lactobacilli does make H2, but I don't know that it is used in any probiotic supplement.


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## Pete (Jan 20, 2000)

ZD, I would be lying if I said that I totally understood the bacterial connection. All I know is that the small intestine is suppose to be sterile. So it doesn't matter what type of bacteria, there should be none there. Some mechanism is allowing these bacteria to grow where they shouldn't be. I don't really understand why antibiotic therapy is what they do first. I believe it is probably done because some people don't have it regrow and get lucky and are cured. I would imagine this a very small percentage. I think the real reason they treat the overgrowth first is to get people feeling better and then they can concentrate on the underlying cause.


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## flux (Dec 13, 1998)

oops[This message has been edited by flux (edited 01-29-2001).]


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## Guest (Jan 30, 2001)

Very interesting stuff Pete.I have to say I was more optimistic about the study before I read your description of Dr Lin's procedure. Some of the things that sounded odd were the tongue photograph, the order of the tests (that flux pointed out, with the motility tests after), and that Dr Lin thinks "the overgrowth of bacteria is very likely to be involved in CFS, fibromyalgia, GERD, and IBS." That's a sweeping statement for something that is just starting to be studied. Having said all that, it -seems- to make some sense... the whole bacterial overgrowth in the small intestine. It sounds like a lot of people are having this treatment, so we should be hearing soon from others about their results also.Here's my biggest problem with the whole antibiotic treatment theory. It would seem to me that it has got to be pretty hard to get bacteria in the small intestine. I mean, the small intestine is exposed to a lot of bacteria, so I'd think through human evolution the small intestine would be extremely resistant to this. It would seem to me that it would take significant and continuous motility (or other) problems to let bacteria live in the small intestine. So I don't see how taking antibiotics could be anything but a temporary relief. Then again, maybe taking the antibiotics helps restore normal gut motility that resists future overgrowths... hmmm, just thought of that, guess I'm back where I started. Just rambling.I really hope Dr Lin is on to something "big" like you said.


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## Pete (Jan 20, 2000)

Seeker,I agree with you but lets use me as an example. I feel like ####. Had gastric emptying study which showed delayed emptying. Was prescribed propulsid. Had follow up study on propulsid and emptying time was normal yet I didn't feel any better. Is it possible I did not feel better because this overgrowth was not addressed. Maybe adding back a drug like propulsid could keep the bacteria from going there. So what I am trying to say is that maybe none of these drugs work until the bacterial issue is dealt with first. Then again maybe the overgrowth has something to do with the altered motility. I don't know. I am a guinea pig but I am noticing results. Every day I am feeling better on this antibiotic. I wish I could stay on it forever. I will let you know how the plan goes and treatment continues


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## jcaf (Feb 19, 2000)

http://gsbs.utmb.edu/microbook/ch006.htm There are two sections titled:Gastrointestinal Tract FloraThe second of these is about 3/4 of the way down and seem relevant.


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