# I Tested for Bacterial Overgrowth at Cedars-Sinai



## Guest (Feb 2, 2001)

Hi! I just got back from Cedars-Sinai, and I, like Pete, tested positive for bacterial overgrowth. I'm so excited that some of my symptoms might be alleviated!For those of you considering the test, you might want to call the office. The people at Cedars-Sinai are wonderfully friendly and helpful. They are busy, but I'm guessing they will try to find time to answer questions. Also, some of you might be interested in knowing the test is about $600, and if they find the bacteria you will need to be retested until the bacteria is gone. My insurance is paying 75% of the costs, but this is still a very expensive thing to do. For tests, I have to fly from DC to LA.The test is long, but not bad compared to what my GI put me through. You drink a small amount of a syrup--it tastes and has the consistency of honey or maple syrup. Then, every 15 minutes you blow into a special bag. The technicians take the bag, and push the air into a machine that registers on paper how much hydrogen is in your breath. (It looks like a lie detector test.) You do this for 3 hrs.I don't start my neomycin experience until Monday, but I am excited to give it a try. The first couple of days are supposedly pretty bad, so I have set aside time to rest during the first few days on the stuff. I just wanted to post this to get some more information about the test up on the site. I'll keep everyone updated as my treatment continues.


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## Ugh (Jan 30, 2001)

Bee, can you please tell me what your IBS symptoms are?I'm just curious what the IBS symptom profile is (if there is one) for the people testing positive for bacterial overgrowth.


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## mkoonie (Nov 26, 2000)

Me, too.


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## Guest (Feb 2, 2001)

Dr. Lin and Dr. Pimentel list the symptoms of people with bacterial overgrowth as gas, bloating, diarrhea, abdominal pain, and sometimes alternating diarrhea and constipation. My symptoms were diarrhea, slight abdominal pain, and gas. Unlike Pete, I didn't notice my tongue was "coated" or that I had a bad taste in my mouth. In fact, my symptoms have improved recently--no pain and just a "loose" BM about 2 hours after a big meal, usually dinner. I was afraid I would not have the bacteria, but I scored through the roof when the syrup made it to my small intestine.I hope this info. helps you. Post here if there's any other information I can share.


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## flux (Dec 13, 1998)

> quote:Hi! I just got back from Cedars-Sinai, and I, like Pete, tested positive for bacterial overgrowth


If you had said you were having test before you had the results, I would have guessed this.


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## HipJan (Apr 9, 1999)

Those of you who are at Cedars-Sinai, could you ask the staff there if are other hospital systems in the country that are now doing similar tests? Thanks!


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## LUCIA (Nov 1, 2000)

HI. Does this research also envolve your personal doctor to also participate in administering neomycin if you are from out of state? Do you know what are some reasons some people are rejected from this research? I also want to prepare you to feel strong pain after taking neomycin. Always take it with lots of food. GOOD LUCK.------------------


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## KateyKat (Jan 4, 2001)

Queenbee, did they tell u exactly what bacteria they found .. or just 'bacteria' in general?KK


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## Guest (Feb 2, 2001)

Quennbee,Please keep us updated on how you are doing. I am going in April myself. I am especially interested in knowing if your abdominal pains get better. Which of the doctor's did you see? What did you think of him? Have they said what the next step is in doing after you complete the antibiotics?


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## Guest (Feb 3, 2001)

Flux, are you saying everyone tests positive for bacteria at Sinai? brian


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## Kathleen M. (Nov 16, 1999)

Well based on Dr Whiteheads evaluation of the Ceder-Sinai data ( www.aboutibs.org --it's one of the things labeled NEW ) they certainly do the test at UNC-Chapel Hill Hospital. It isn't a new test. Their paper was just the first looking specifically at IBSers who were refered to the clinic because they were suspected of having IBS. The rate of positive tests seems to be much lower at UNC-CH. K.------------------I have no financial, academic, or any other stake in any commercial product mentioned by me.And from the as if IBS isn't enough of a worry file...from New Scientist's Feedback column: FINALLY, we feel it is time to bring to an end our theme of notes on toilet doors. But we can't resist passing on one last example, photographed on the door of a ladies' loo in the Sequoia National Park in California by reader Liz Masterman: "Please keep door closed to discourage bears from entering."


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## HipJan (Apr 9, 1999)

Queen Bee and others in this program -- Some questions: Have you regularly had symptoms in addition to GI-type symptoms, e.g., misc. joint and muscle pain, burning sensations, headache, etc.? (This is a very important question to me.) How long have you had your symptoms?Thanks!


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## Guest (Feb 3, 2001)

Hi, everyone! Thanks for showing all the interest. I hope to answer all your questions.Before I get into things, I want to say that I'm not trying to encourage or discourage anyone from having this test done. (Flux--I know you don't give the test much credence, and I thank you for voicing that opinion. It is an important one.) All I want to do is answer questions about MY experience so we all know more about the procedure.My PCP is administering the Neomycin. The Doc's at Cedars-Sinai thought that would be best for 2 reasons: 1. if my PCP prescribes it, it is covered on my insurance and costs significantly less; and 2. my PCP is is closer proximity to me and is better suited to watch over this phase of the treatment.They could tell me what bacteria I had, but I did not make an appointment to do that. Drs. Lin and Pimentel are booked 3 months in advance, and I didn't want to wait that long to see if I had the bacteria. Now that bacteria has been found, I'm going to make an appointment to see Dr. Pimentel. (It just didn't make sense to wait 3 months to see IF I had the bacteria.) Hopefully, in a few months I will not only know what I have but how it got there.For Shellygrl--as I said I didn't see a doctor. I did meet briefly with both of them as they went over my results--where the bacteria was and how they machines worked. I would feel comfortable with either, but I thought Dr. Pimentel had a little more personality. Both are very qualified and don't mind taking the time to explain things to their patients.For HipJan--I do have a little bit of joint/muscle stiffness in my neck. No headaches, but maybe those are stress-related for you. I can't link my IBS to a stressful event at all--it just showed up one day. What do you mean by burning sensations? Like acid reflux? I don't experience acid reflux as a symptom, but many IBSers do.I hope all this information is helpful to those of you curious about test. I'll keep checking back to answer any questions.


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## flux (Dec 13, 1998)

> quote:Flux, are you saying everyone tests positive for bacteria at Sinai?


Well, not everyone, but pretty close.


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## snoopydog (Sep 7, 2000)

Is this the H-Pyloric bacteria?


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## HipJan (Apr 9, 1999)

I meant to also ask anyone if they have experienced excessive weight loss (not due to caloric reduction)? I would think that nutrient malabsorption could often be associated with bacterial overgrowth?QB -- I have at times severe neuromuscular and/or joint pain (I guess) in different parts of my body; I've hardly been able to walk for three days now. I also have had burning pain/soreness in the stomach (though not as frequently there anymore) and pelvic area. Etc. Obviously, to me, at least, some sort of "disease process" is occurring, though it appears it may well continue to go on unnamed (undiagnosed) indefinitely.







(Nope, not caused by mental/emotional stress.)Good luck to you!


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## Guest (Feb 3, 2001)

HJ--I wish I had something to offer you, but I don't have any of those symptoms at all. I'm so sorry to hear that you're in pain. You might want to call the doc's at Cedars-Sinai to ask if this is a symptom of bacteria or if they have any suggestions. You sound like you might be willing to try the test just to see if it helps. I only had my IBS symptoms for 5 months before having the test done, and the whole time I maintained it was some low-grade food poisoning that other doctors couldn't see. You seem to feel the same way.


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## Kathleen M. (Nov 16, 1999)

I would tend to think that H.pylori wouldn't be growing in the small intestine. Most bacteria that grow under extreme conditions (like the very low pH of the stomach) usually have adaptations that pretty much make it so the only grow well only under those adverse conditions.K.------------------I have no financial, academic, or any other stake in any commercial product mentioned by me.And from the as if IBS isn't enough of a worry file...from New Scientist's Feedback column: photographed on the door of a ladies' loo in the Sequoia National Park in California by reader Liz Masterman: "Please keep door closed to discourage bears from entering."


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## Pete (Jan 20, 2000)

Queenbee,Good luck. Please keep us informed of your treatment and I will do the same. I am going back 2/19 for a repeat breath test. I have had great improvement on the neomycin. This 2nd and 3rd day were pretty rough then it got better.


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## Guest (Feb 3, 2001)

I have had IBS (both C & D) for a number of years. (I believe it may have been a bonus I acquired after radiation/cobalt treatment for ovarian cancer).About 2 years ago, when I was scheduled for yet another colonoscopy, I asked my gastroenterologist to test me for H. Pylori. He told me that I absolutely did not have this, because I did not have an ulcer. WRONG! He phoned me after he got the results from my testing and said I was extremely heavily infected with H. Pylori.I don't know whether or not this was associated with my IBS, or with my having undergone the radiation/cobalt treatments which devastated my intestinal area. But in any case, I just want to report that H. Pylori doesn't necessarily have to be associated with having ulcers!------------------


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## FPHHT! (Feb 1, 2000)

Hey Queen, it's good they warned you about that medicine stuff. I'm in the study, so I don't really know what kind of pills they gace me, but, when I eat them my my gut empties out within 45 minutes. (Splooosh!) I get the D (sorry for the graphic) but no cramps, no pain, no gas, no feeling on incomplete evactuation.WierdI have been eating the pills for 9 days now and the d went away.FARTMAN!


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## Guest (Feb 4, 2001)

Thanks to everyone for the heads-up about the Neomycin. My PCP has a cold--how ironic--and so my appointment has been rescheduled for next Friday. Before I go, I'll plan on stocking up on groceries in the event I can't get anywhere for a while. Pete--how is it going after being on the antibiotics for a while. Are you feeling better? I can't wait to hear how your re-check goes. Good luck!


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## snoopydog (Sep 7, 2000)

I dont know if Im missing something here or not, but I see its been asked several times, what the name of the bacteria is..And Ive read this topic over and over trying to see if I missed it.. Would you please tell us what the name of the bacteria is? And is it only detected by the breathing test, how bout blood test?


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## Ugh (Jan 30, 2001)

Snoopydog,My understanding is that it's a breath test because they are trying to see if the bacteria is located in the small intestine. It's the location of the bacteria that this treatment is all about, not the type of bacteria. I believe the reason you don't hear too much about what type of bacteria they are treating is because the gas the breath test detects can be produced by many types of intestinal bacteria. I suppose they'd actually have to extract the bacteria from the small intestine to know what type it is.As for a blood test, even if that was possible it wouldn't indicate if the bacteria was in the colon or small intestine. Because the bacteria may be normal for the colon, you need a test that examines the output of the intestine, not the colon. That's the whole reason they do a breath test as opposed to just testing the gas that comes out the other end.


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## Guest (Feb 5, 2001)

Pete and QueenBee: Just wondering if you were told any instructions to follow (in your study with the RX) as far as diet? or other medications??Thanks for your reply...Barbara------------------BJV/Female__(D)


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## moldie (Sep 25, 1999)

newgirl just posted an article from the Dallas News that discussed this too: http://www.dallasnews.com/science/health/2...l_05liv.AR.html I think that making the assumption that a good number of the people did not return so they are assuming it helped, is being a little over-confident and very unscientific. A lot of people don't come back because the therapy may have made them worse, or did nothing at all. The point was made that regular follow-up is essential. I think that they just can't look for one type of over-growth and not test for any others either. Since antibiotics are what caused fungal over-growth in me, I would be very cautious. Make sure they identify all the critters, and make sure you are checked on a regular basis as they suggest. The question remains: Does the medical community really know the correct balance of each and every species and the proper way to manage them (dosage, strength, frequency, length of time for protocol), or is it still a guessing game? My opinion is that they are still trying to figure this out. Good luck.


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## Guest (Feb 5, 2001)

I wasn't told anything about my diet or other prescriptions. I am currently not doing much for my IBS with my diet, just avoiding grease. I also am not taking any medication for my IBS. I am on some regular prescriptions (I have hypothyroidism), and they did not interfere with having the test done.


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## Guest (Feb 5, 2001)

Queenbee,How are you doing right now and do u notice any changes yet?


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## Guest (Feb 6, 2001)

I am most interested in this discussionwith Queen Bee and Pete,as I do believe this could explain the swelling, burning it is just like I have a loaf of bread baking in my stomach, it gets bigger and bigger, I would like to know if my local doctor here in Australia can treat me with this Neomycin.Any mesages, would be greatly appreciated.Carmen


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## Guest (Feb 6, 2001)

Does anyone know if any doctors in Texas are doing these tests/treatments? If not, I'd appreciate the phone numbers or email addresses of the Los Angeles doctors. (I'd prefer not to wait four months for an appointment, if possible.) I've had IBS for about a year and I've been thinking (hoping) it might be some type of bacterial infection even though I've been told to just live with it or to try taking an anti-anxiety medication (the blanket response when your doctor has no clue what's causing your symptoms!). Thanks!


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## HipJan (Apr 9, 1999)

CF, I'd also like to know about such docs here in Texas! I'm in Houston; surely, there's someone here, like, maybe Baylor Med.


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## Kathleen M. (Nov 16, 1999)

One suggestion is to go to Medline (I like www3.infotrieve.com) search on bacterial overgrowth and the full name of your state.Look at the abstracts. Contact the hospital that they are affiliated with and ask if the hospital does this sort of testing for patients. (there may be some places where things are just a research thing, but often times researchers use the facilities that the hospital uses for the regular patients after all if you have someone that does a certain test regularly on hand it make sense that they are a good person to run the tests on your subjects). Find out who you should make an appointment with to see about getting the test run.K.------------------I have no financial, academic, or any other stake in any commercial product mentioned by me.And from the as if IBS isn't enough of a worry file...from New Scientist's Feedback column: photographed on the door of a ladies' loo in the Sequoia National Park in California by reader Liz Masterman: "Please keep door closed to discourage bears from entering."


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## Guest (Feb 6, 2001)

Shellygrl--My PCP got sick, and my appointment had to be rescheduled for Friday. After that, I'll make a separate post to update everyone about the Neomycin, its effects, and how I'm feeling.When I was looking for a closer hospital to have the test done, I found some that offered the laculose breath test but only to determine if someone was lactose intolerant. So, when you are calling hospitals, make sure they offer the test to find bacterial overgrowth. Otherwise, you might end up with a lactose intolerance test!I don't remember who asked, but the following number is for Drs. Lin and Pimentel at Cedars-Sinai. If you are thinking of calling to see if they know of another hospital offering the breath test, they don't know. (I tried that.) Call 310/423-6143 or fax 310/423-8356. Good luck!


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## FPHHT! (Feb 1, 2000)

There is not a particular type or name of bacteria they are looking for. There are apparantly hundreds of species of the bacteria. It seems that it's the location that they are concerned about.It's the same bacteria that lives in the large colon (lot's of different types) and somehow they get into the small into the small intestine. I guess they are not supposed to be in there.I'm in the study, so I don't know if if I have the bugs in the wrong place or what kind of pills I ate. Based on what Mr. Mottus said I don't think I have the overgrowth problem because the drink they gave me did not make me feel bad at all until 4 hours later when it gave me a bad case of D. (I guess it got to the big colon by then.) And I don't feel a lot different yet.It might be too soon to tell.


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## Kathleen M. (Nov 16, 1999)

Ms Mottus.







Or Dr. Mottus if you prefer (Ph.D. not M.D.).It's OK the screen name is supposed to be gender indeterminate. And I seem to type more like a guy than a girl, very few people guess correctly.At least people in person get the gender correctly. So thank goodness for small miracles.K.------------------I have no financial, academic, or any other stake in any commercial product mentioned by me.And from the as if IBS isn't enough of a worry file...from New Scientist's Feedback column: photographed on the door of a ladies' loo in the Sequoia National Park in California by reader Liz Masterman: "Please keep door closed to discourage bears from entering."


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## Guest (Feb 7, 2001)

The Dr. at Cedars-Sinai warned me that the syrup will cause some D when it hits the colon. I didn't feel any effect from it, so I forgot about that until I read PFFT's comments. Obviously, I don't know for sure whether you're on meds or a placebo, but it sounds like they really gave you the laculose syrup.


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## Guest (Feb 16, 2001)

bump


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