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Now they say maybe I don't have H pylori

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Irritable Bowel Syndrome
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Posted 12/4/2007 5:36 PM (GMT 0)
I had the blood test last week and was told it was positive. SO I started the meds which are brutal. 3 days into it I called dr. (actually physicians asst) and told her. SHe was going to switch out the biaxin for tetrcyc. But then called me back and said she had talked to my primary care dr. and my gi dr. and they agreed I should stop the med until I could have the breath test to be sure I even had it. Huh? I thought the blood test was reliable for the initial diagnosis? I know it's no good for the followup. I don't even know if this is what's causing my problem. But I hate the idea I am now doing nothing about it. They are trying to schedule the breathing test. She is also going to schedule an upper endoscopy which I am looking forward to because I feel like there is something wrong w/my GI system. I am so uncomfortable. Started prilosec. They want me to take 2x a day for now. I hate feeling this way. Nothing really makes me comfortable. I get terrible, what I call "hunger pains", when I'm not even hungry. I'm guessing it's actually acid. It does feel better if I eat something, but I don't want to be eating all day! AAAAHHHHHHH I hate all the thinking about this. What if this, what if that. I hate the idea of spending weeks chasing down one thing, then finding out that's not it and starting off in a new direction. I realize in the world of IBS there is a lot of HURRY UP AND WAIT............
Posted 12/4/2007 6:28 PM (GMT 0)
Hi,

I'm a 34yo Male who's slightly overweight but otherise been normally active and healthy my whole life. I don't have diabetes or any other diagnosed conditions. After a nasty virus hit our house, a couple weeks later I have had symptoms now similar to yours for about 4 weeks. I still haven't been diagnosed for anything, including H.pylori. I will reply with my Endoscopy and Sonogram test result which is scheduled for the 12th, problem is I'm reading that many times they don't find anything and folks still have the symptoms.

The good news, after about 4 weeks though, I'm starting to feel a little better (maybe feel 90% normal 50+% of the day, sometimes more). Some of the things I've tried below have helped. Unfortunately there are quite a few things it could be so, my approach was to cut back to the least common denominator of foods for the suspected things and use whatever I could find edu/gov research and scientific studies on to supplement my diet without aggravating anything else.

1st thing I did was cut out any non-essential foods (sweets,chocolates, any kinds of flavored drinks, etc). I tried a very bland diet of soups, bread, rice, etc a 'flu-type' approach but that didn't fix the problem. During that time I read up on:

Mastic Gum (Search for 'In Vitro' and later for 'In Vivo' to find out some of the studies) ;

http://www.pubmedcentral.nih.gov/articlerender.fcgi?&artinstid=1797732  "

In summary, it's an old, natural, Mediterranean remedy for stomach problems. In studies, it seems to make a huge difference in fighting H.Pylori-- in test tubes (in vitro) but I wasn't able to find any research proving it worked in humans (in vivo).

I thought I'd try it anyway since I was pretty desperate to get started on something! Unfortunately, it's not something I've seen at the grocery store or pharmacy, and I'm not one to order supplements on the INTERNET. I searched a bit and I found a local place that sold Mastic Gum. (They sell it at a chain called 'VitamineShoppe' and I've also seen it now at WholeFoods Market if you have any of those nearby). A months supply was about $12-18ish.

I started on it, 2 pills in the am before eating, and it actually helped with settling my stomach but didn't fix me. For me it seems to cause some very mild burping but I actually feel better when I burp so it was very nice. Has a strange aroma to it, but not bad. Sorry for TMI.

After I saw the doctor again, who didn't think I had H.Pylori (suspected viral induced gastro paresis) I started on my antacid = "Protonix" and between that, my reduced diet, and the Mastic Gum I was mostly feeling better for some parts of the day.

I didn't believe the doc 100% since they didn't test yet for H.Pylori at all. I read also that broccoli sprouts (specifically the component Sulforaphane) can be very effective at fighting H.Pylori.  (However, this link refutes that: http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=16082421)  Unfortunately, 'sprouts' are also controversial in that if they are not cleaned well they can carry other nasty things. I had a hard time finding them at the grocery store but I bought some pre-washed regular-ol Broccoli (comes in a bag) and have been nuking it for 2mins in the microwave (a little water in a bowl, cover, cook) and eating a small bowl full at lunch or dinner each day. I eat it plain, it's not the greatest taste but I'm willing to eat some things that don't taste great to make me feel better. 

The other thing that helped me a lot was not sitting around and being upright and active doing 'something'. If I sat my stomach made me nervous or my nerves made my stomach upset (I think the former, but docs usually suggest the latter). So, I found that just walking around the block for 15-20mins helped.

My point of this post is that while you wait on the docs (who aren't in any hurry it seems) there are some inexpensive things you can research and try and see if they help. I'm not a doctor, or a salesman, just someone who's also going through this craziness. I wish you the best of luck on your quest!

Oh, a few other things I've been doing since then is drink lots of water, eat smaller portions (which was easy since I felt full most of the time anyway) and chew well--more than normal... make food like 'baby food' before swallowing.

12/5/07 Edit (added a few links above):

Forgot to mention, I did try (2x) some DGL Licorice suppliment (http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-licorice.html). 

It also has been tested to help control (but not eliminate H.Pylori).  Supposedly it coast the stomach and helps digestion.  The DGL process supposedly removes the 'negative' components (that are bad for some people).  I got sugar free ones and I must say the taste was pretty nasty (it's not a pill, you have to chew 'em...), but, again, all in the name of health.  Both days when I had the Licorrice I was still having some of my heart-rate / dizziness / anxiety symptoms.  I haven't tried it again,but, I don't think it was the cause... just haven't gotten around to trying that one again.  I only added it to this post because again, it's easy enough to find locally and may help someone with stomach probs. 

Sorry for the rambling and hope this gives you (or others) some positive direction.

Post Edited (eihcet) : 12/5/2007 9:54:41 AM (GMT-7)

Posted 12/4/2007 6:41 PM (GMT 0)
I was under the impression that the most definitive way to find h. pylori was to biopsy the stomach during an endoscopy. Supposedly it lies buried under a layer or two of tissue in the stomach (so your stomach acid won't destroy it) and it can be VERY hard to detect for that reason.

The breathalyzer, though, can see if you have a bad bacteria problem by just seeing if you exhale the wrong combination/levels of gasses (I don't know if it will necessarily determine WHAT bad bacteria you have, but they're all treated pretty much the same way: antibiotics).
Posted 12/4/2007 7:58 PM (GMT 0)
Eihcet: Thanks for the feedback. Don't every apologize for rambling on and on. To you what may be rambling, may end up containing valuable info for someone else.

I keep hoping this is just some virus that will go away. IT's been about 3 weeks now. Although I had a similar bout at the beginning of oct. but that only lasted for a couple of days. Then felt ok (not great, but my usual ok) until 3 weeks ago.

Keriamon: My primary dr is supposed to call me this afternoon w/info on both the breath test and the endoscopy. I may just suggest that they do a biopsy during the endo and skip the breath test. If they are going to do the endo anyway, why not take a biopsy then instead of doing a whole other test!

Thanks to both of you for your input.

Posted 12/4/2007 10:39 PM (GMT 0)
The breath test for h. pylori is supposed to be better than the blood test. They should do an biopsy. Once you have the breath test you cannot get it again for a very long time i heard. Also, you cannot be on any PPI's like Prilosec for 2 weeks before a breath test or it will not be accurate. Your Doctors should have told you that. I did not test positive for h.pylori with biopsy but my Dr. said that there was no question when he looked at my stomach inflammation that that was what I had so I took the treatment and then some months later had the breath test. The only thing I do know is I had to go off all PPI's I think for at least 2 weeks before the breath test, maybe even a month. I could take Pepcid, Tagamet or Zantac but not Prilosec, Nexium and that group.
Posted 12/4/2007 10:43 PM (GMT 0)
Because you can have more than one bad bacteria in your guts and the endoscopy biopsy only shows the one!

Personally, I would say give me the breathalyzer, then move from there. If you have bacteria of any kind (h. pylori or something else), it should show up in that test ("should" being the operative word there). If it does, treat it and see if it gets better. If not, endoscopy to check for ulcers, hernias and other sorts of stomach/esophogeal damage.

That's what I would want done, and in that order. It seems to me that doctors like to do a bunch of tests all at once and rule things in and out all at once. Of course, if you don't have insurance or have to pay a big chunk of those tests, you need to let your doctor know, hey, let's start with the most comprehensive/most likely to reveal something test and only THEN work up to another test if that test shows nothing or the answer doesn't work.

Of course, if you have insurance, you may prefer to just do everything all at once and get it over with instead of a test here, a treatment here, no go, another test, another treatment, etc. ad nauseum.
Posted 12/5/2007 1:32 AM (GMT 0)
does the h. pylori test (breath) test for other bacteria or is there a breath test just for h.pylori?
Posted 12/5/2007 2:52 AM (GMT 0)
WOW is that really true re: the prilosec? I'll be mad because the dr. JUST told me to start taking it again as of TODAY. Maybe if I've only taken it today it would be ok? Now I'll have to call her in the morning to find out. Thank you for letting me know that. I would have been wasting my time. Also, that will stink if I can't take the prilosec as that helps the pain. How are those other meds that you can take? Any good?

As for the testing, my plan was to do exactly what Keriamom said. I do have insurance so that's good. I can get the breath test without an appt. so I was hoping to do that tomorrow. Now I have to wait and see what doc says about the prilosec. AAAHHH always a wrench thrown in. That will mean waiting 2 weeks without doing anything. THen I see GI on 12/18. I'll talk to her then about endo.

about the test itself..what do they do and how long does it take? Thanks.

Posted 12/5/2007 6:32 AM (GMT 0)
Am posting this link so you can see the whole things. You cannot take those PPI's for at least 2 weeks and other things for a month. It is all explained at this Cleveland Clinic link. As you can see you were not given very good instructions. Mine were all written down and given to me in advance by the gastroenterololgist. Not sure where you were getting it done but normally a regular Dr. would not be giving these at their practice. I find that both Tagamet and Pepcid work pretty good. I think Tagamet works a little better on pain but I never had much pain. You want to cut the acid down and they both do that and they are OK to use. At least that is what I was told but not the PPI's
Posted 12/5/2007 6:29 PM (GMT 0)
Well I just talked to my Dr. I told HER what you guys said. She said "oh you are right." SHe is actually the physician's asst. Guess I"ll have to stick w/the actual dr. from now on. She told me to stop taking the prilosec for 2 weeks. She did tell me about the other things I could take. But then I asked her about when she talked me GI dr. I asked didn't my GI dr. say I should probably have an upper endoscopy. She said Yes...so I said why don't I just do that and they can see if I have the H Pylori that way. I don't want to go through 2 weeks without the prilosec, then find out I don't have it. Then I'd have to have the endo anyway. I also don't want to do 2 weeks with no prilosec, find out I have it, take the awful meds for it and THEN still feel lousy and again need the endo anyway. Chances are good my GI is going to want me to have the endo no matter what, so why do both? I'm going to call the GI dr. now and see when we can schedule this.

Posted 12/5/2007 7:34 PM (GMT 0)
Doesn't that just fry you that they would make that kind of mistake and totally mess up the test? There is just no excuse for that. It should all be written down and handed to the patient. We have to schedule ours so that is why we get the instructions. Was this being done at a PCP office or where. I know it isn't done around here except at gastro offices and now I know why. LOL Go for the endo, it is not hard and they will be able to test for many more things than just the h. pylori and really see what is going on. Glad you called. I was glad I found the site to back me up as I thought I had the info correct but then I am getting very old.

Posted 12/6/2007 2:04 AM (GMT 0)
I know, I was pretty pissed. And you are right about the endo. I'd rather just do that and get more answers. I was afraid if I did just the breath test I could be missing other potential problems. I'll feel much better knowing she was able to see the entire area. Yes, the people trying to schedule it were my primary care office. As it works out, I have my GI appt on the 18th and they've already booked me for the endo on the 20th which is great. Her secretary is super. When I talked to her today she said she couldn't get me in to the dr. any sooner, but that we should go ahead and book the endo appt now. This was good because if I waited until the 18th to try and schedule it, I probably would have had to wait until Jan or later! She was really sweet. She was all excited because someone had canceled for the 20th, so I could have it. It's good too cuz it's at 8:30 a.m. I like to do these things 1st thing in the morning. So we'll see! thanks for the input!! 
Posted 12/12/2007 3:58 PM (GMT 0)
Mine was DX with scope and biopsy ......and you are so bleeding right the meds are unreal ......had this last yr.........BRUTAL it is for sure ........having all those antibiotics and all the rest of meds ...........I have crohns

** I was also told by GI that many ppl have it and dont know it **
Go figure.............
Posted 12/12/2007 4:29 PM (GMT 0)
Yeah, through the reading I have done, MANY people walk around w/this all their life because it never effects them. This leads to the questiong then, IS they h pylori causing me these problems or did they just happen to discover that I have that. If it is confirmed w/the scope and I do this terrible regimen of drugs (which I will not start til after xmas!) and I still feel lousy, what then??? It's like they have jumped on the h pylori as being the culprit when maybe it was just lurking there and is not the cause of my problems. This is what frustrates me about the wonderful world of the GI tract and IBS. It's all a lot of trial and error. Unfort. the whole time they are guessing, we are suffering! I am greatly looking forward to my appt on the 18th and scope on the 20th. I don't think I've ever been this eagerly anticipating medical visits in my whole life! Every day is a trial. I just try to get through which sucks any time but especially this time of the year. I just push my stuff to do things every day otherwise I would sink into a depression of woah is me........ eyes
Posted 12/12/2007 4:30 PM (GMT 0)
Howlyncat: what were your systems that sent you in for the scope to see if you had this?

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