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Newly diagnosed, about to start treatment...a few questions

The cure of Hp usually requires antibiotics. Other things have been tried and have a weaker effect.

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Cogsworth
Posts: 4
Joined: Mon Sep 08, 2014 2:49 pm

Newly diagnosed, about to start treatment...a few questions

Post by Cogsworth »

Hello all, glad I found this forum just when I needed it most! I was tested positive for h. pylori last week and I am about to begin triple therapy but I have a few questions and would like some guidance and advice.

First my story, which I will try to keep brief. I am a 42 year old male. In my teens and twenties I had classic IBS which resolved in my early thirties. Then my new stomach problems started about 6 years ago with the following symptoms: getting full quickly after a small amount of food, nausea after eating, pressure/bloating/sensation of gas trapped in the stomach after eating, loss of appetite, unintentional weight loss, anxiety and panic attacks, sour taste in my mouth. I should also mention I am an emetophobe (fear of vomiting) so many of these symptoms raise my anxiety level through the roof. I rarely have pain or heartburn.

I have gone from almost 300 lbs to just under 200, simply because I can't eat normal size portions anymore. When I first started seeking treatment 6 years ago, the first GI doctor I saw at Cedars-Sinai basically said I was lucky to have a "natural lap-band" and he was afraid if he treated me I would become overweight again. I saw a second GI doc who did the upper GI barium series (found nothing), two stomach emptying studies (both showed my stomach emptied too fast), h. pylori blood test (negative) and finally an upper endoscopy which revealed some minor inflammation in the lower part of the stomach and microscopic evidence of reflux around the lower esophagus but nothing to explain my symptoms. I have tried several different antacids and PPIs with no success.

For a couple of years I just lived with it but the last few months it has gotten worse. I feel sick after eating or drinking. I get this nauseous feeling of gas trapped in the stomach and I have to walk around the block a few times fighting off panic waiting for the burp to come. I am afraid to go out to eat because I might get sick. Some weeks I barely eat a cup of food and a few sips of water leaving me weak and dehydrated and I continue to lose weight. This condition is ruining my life! One thing all my doctors have said that bothers me is that I've had this for so long that if it was really serious it would have killed me by now. So much for quality of life...

I went to a third GI doctor a few months ago who suggested a problem with my LES valve leading into the stomach and recommended peppermint oil (which didn't help) and hypnotherapy (which is too expensive.) Finally two weeks ago I saw a fourth GI doctor, and he is the doc who actually performed my endoscopy a couple years back. So far he is focusing on the anxiety issues and potential aerophagia (nervous air-swallowing) but I honestly can't tell if the anxiety is causing the symptoms or the other way around. However...we talked about h. pylori and he went ahead and gave me the breath test that afternoon in the office. Blew into one bag, drank some super sweet liquid, waited a few minutes then blew into another bag.

I was shocked to find out a few days later that the breath test came back positive! So my first question...is it possible that HP can be missed in the blood test and endoscopy biopsy, only to be found in the breath test? Could h. pylori have been the culprit from the very beginning?

Next question...has anyone with HP had symptoms similar to mine, and did they resolve after treatment? I am afraid my symptoms could be something else and killing off the HP might have no effect.

Last question...I have read so many posts about the horrors of antibiotic treatment...how bad is it really? I have been prescribed triple therapy consisting of Protonix, Amoxicillin and Clarithromycin. What can I expect and any tips to get through it?

Thanks in advance!

Helico_expert
Site Admin
Posts: 4600
Joined: Wed Mar 02, 2011 7:20 am

Re: Newly diagnosed, about to start treatment...a few questi

Post by Helico_expert »

it's surprising to hear a false negative blood test result. Usually blood test is very sensitive. Then again, how positive is your breath test? if it is a borderline positive, perhaps it's a false positive instead?

most of the people does resolve their symptoms after antibiotic treatments. And for those that have successful story dont usually come back to the forum. So, whatever you read from the internet is mostly biased. Yes, there can be some nasty side effects from antibiotics. But from majority of our patients, they are tolerable and completed the course without much problem.

tips. the more you think about the symptoms, the more likely you'll experience it. Try to gather positive thoughts and distract yourself from thinking about it.

Cogsworth
Posts: 4
Joined: Mon Sep 08, 2014 2:49 pm

Re: Newly diagnosed, about to start treatment...a few questi

Post by Cogsworth »

Helico_expert wrote:it's surprising to hear a false negative blood test result. Usually blood test is very sensitive. Then again, how positive is your breath test? if it is a borderline positive, perhaps it's a false positive instead?

most of the people does resolve their symptoms after antibiotic treatments. And for those that have successful story dont usually come back to the forum. So, whatever you read from the internet is mostly biased. Yes, there can be some nasty side effects from antibiotics. But from majority of our patients, they are tolerable and completed the course without much problem.

tips. the more you think about the symptoms, the more likely you'll experience it. Try to gather positive thoughts and distract yourself from thinking about it.
I should clarify that the blood test was in 2009, and I had an upper endoscopy in 2012 which I believe they biopsied for h. pylori both of which were negative. Which means it's entirely possible I've contracted HP sometime in the last two years since last tested. That would be particularly disheartening, considering my stomach problems started long before then which would mean it's not caused by the HP...unless I had it back in 2009 and 2012 and those tests were false negatives.

The doctor did not tell me how strong the breath test positive result was, in the lab report it just says "detected". How common is a false positive on the breath test?

Thanks for your advice about the treatment, I am planning on starting tomorrow morning since I have the next couple of days off. I'm trying to muster some positive thoughts that I'll get through it easily!

tornado82
Posts: 73
Joined: Tue Jul 01, 2014 2:09 am

Re: Newly diagnosed, about to start treatment...a few questi

Post by tornado82 »

Hello cogsworth. I sympathize with your situation. I recently finished a several month ordeal that involved the same treatment you are about to begin. I am a 31 year old male. I too have a tendency toward anxiety. Im a small frame guy and only weight around 125 lbs, but even I lost several pounds during my ordeal. My symptoms were different than yours somewhat, as I was having a lot of chest pain that was nonstop, 24 hours a day. I was scared to death I had esophagus cancer. I wont go into my story because I wanted to mainly address your post here...I want to encourage you to try and not let your anxiety become a factor. My anxiety was amplifying my symptoms a lot. Anxiety is a terrible affliction that can manifest itself in a lot of physical ailments ive learned in my life. Ive battled anxiety since I was about 13 years old, and have it mostly under control these days without medication, but I am very familiar with it. The good news is that you do not have any serious life threatening issue occurring right now in your stomach, or the endoscopy would have found it. Im actually surprised given your symptoms that you seemingly had a pretty clean endoscopy. This is something to be very happy about, because my endoscopy was not as clean as yours. Im really curious about the fact you say you are only eating a cup full of food a week... This is, as you well know, not healthy at all for your body. Are your symptoms THAT severe that you cant even eat a small handful of food? Or, is this lack of appetite due to anxiety? If it is due to anxiety then you are having some severe anxiety problems and need to try and address that.

Regarding your treatment you are about to begin. I would not stress over a 1st line H. Pylori treatment. I done extensive research throughout my ordeal and so Ive spent tens of hours researching H. Pylori and the various anti biotics. Most people handle the treatment well. The most common side effect you may experience is diarrhea. This should not alarm you however, as it is common with antibiotic treatment. If you are taking clarithromycin or metronidazole, one of which is almost always in a 1st line treatment, you will also get a metallic taste in your mouth. I lived for 2 solid weeks with this taste in my mouth due to the clarithromycin. It comes out in your saliva. This is also normal so dont be alarmed by it. I would also encourage you to mix a pro biotic into your treatment. Not only have pro biotics proven to lessen the side effects of treatment, but there is sound research to suggest that pro biotics increase erradication rates of H. Pylori when taken in conjuction with a standard 1st line treatment regime. As you may know, anti biotics destroy bacteria. H. Pylori is one such bacteria that it will destroy, and this is a good thing. The bad thing is that your gut (stomach and intestines) are populated with millions of beneficial bacteria. These good bacteria help your body break down and digest food. Unfortunately the anti biotics will destroy these good bacteria as well, and this is often why people have their stomach thrown out of whack by anti biotic treatments. ProBiotics are a great way to replenish these bacteria and help rebalance your gut. I would also add that I handled the treatment very well. I never even had any diarrhea. I was mixing a little pro biotics in however.

Once you are done with treatment, given your symptoms, you should try to stay on a probiotic. You clearly have something going on in the gut. The doctors havent been able to give you definitive answers but dont let this stop you from trying some safe options that have been proven to help people with similar symptoms. Some people report drastic improvements in their stomach just going on a probiotic regime. Eat Probiotic yogurt as a snack, drink a few ounces of keffir every day, or take a probiotic pill like culterelle or something similar. I will also say one thing I tried that seemed to help me, in addition to probiotics, is drinking a few ounces of Aloe Vera juice everyday. Aloe juice is considered a natural digestive aid, and Ive read many positive results from people who began drinking it. It is known to assist ulcers or inflamed areas in the stomach to heal. You can buy the stuff at CVS pharmacy. It does not taste good though, so mix it with some fruit punch or something.

Try to be positive. Id encourage you to dig in and research, as I have done, these issues and what has helped other people. There are a few very safe things you can try on your own. Dont rely entirely on doctors to diagnose and fix you, take your health into your own hands. I would really encourage you to look into both pro biotics and Aloe Vera juice....I've read so many good things about them from everyday people like us. They may not help you much, but you never know until you try, and they are both safe, natural options.

My results came back recently and I was successful in beating my H. Pylori. My symptoms have DRASTICALLY improved in the last 3 months since my chest pain began. I have NO chest pain today, and my stomach feels good. I stayed very involved in the process through throughout, and I hope you will as well. Make sure you are very diligent with this treatment as missing doses can quickly lead to eradication failure, and once you fail, H. Pylori builds resistance to those anti biotics. It is a very robust bacteria. You will then have to take a 2nd line treatment using even more harsh anti biotics...sticking to the treatment plan is very important. Keep us updated here with your progress, we will keep you company here through this ordeal and help when we can.

Cogsworth
Posts: 4
Joined: Mon Sep 08, 2014 2:49 pm

Re: Newly diagnosed, about to start treatment...a few questi

Post by Cogsworth »

Thanks for the replies and I apologize for not posting back sooner. I completed my two week Triple Therapy course with surprisingly mild side effects, though it wasn't easy (see below). I took the meds twice a day like clockwork and didn't miss a single dose. The worst side effect I had from the antibiotics was that gross taste in my mouth from the Clarithromycin.

The hardest part was that my existing symptoms got much worse. I think this may have been due to the antacid (Protonix) rather than the antibiotics, as the same thing happened when my GI doc suggested doubling up on Prilosec. There were several times I got nauseous with that "gas bubble" feeling in my stomach just from the water I needed to take the meds. My appetite was even worse and I could hardly eat anything. I ended up missing three days of work when it got really bad.

The good news is I've already been in for the retest and the results came in yesterday...I am now h. pylori free! It remains to be seen if this will resolve any of my symptoms (my GI doc doesn't seem to think it will) but at least it means I don't have to go through another round of antibiotics. For all I know, it could have been a false positive to begin with. I've got my fingers crossed though. My stomach is still in bad shape and I'm still only able to eat about a cup of food a day.

Thanks for your comments Tornado82. My anxiety is pretty bad and can rear it's ugly head in the most unlikely of situations. Right now my doctors seem to be focusing on the anxiety as the cause of my troubles but I am still pretty convinced there is a physical issue. The anxiety didn't develop until after my stomach troubles started. However, controlling the anxiety would certainly help me deal with my stomach. My main symptoms are early satiety, loss of appetite (I'm never really hungry despite eating very little) and weight loss. And yes, it can get so bad that I can only eat a half to one cup of food a day. Of course eating so little is taking a toll on my body physically and mentally but my doctors don't seem to be terribly concerned yet.

At this point I don't know if it's something physical or if it's all in my head but I'm really on the verge of a breakdown. My next step is probably a CT scan and maybe another endoscopy. I am starting to take a probiotic supplement on the advice of my GP. My GI doc is also recommending a course of Xifaxan in a couple weeks if my symptoms don't improve, a different antibiotic that treats SIBO in people with IBS.

Helico_expert
Site Admin
Posts: 4600
Joined: Wed Mar 02, 2011 7:20 am

Re: Newly diagnosed, about to start treatment...a few questi

Post by Helico_expert »

Just a quick check. When exactly you stop your triple therapy and when you had your breath test to confirm the eradication? You'll need at least 2-3 weeks gap for the breath test.

Cogsworth
Posts: 4
Joined: Mon Sep 08, 2014 2:49 pm

Re: Newly diagnosed, about to start treatment...a few questi

Post by Cogsworth »

Helico_expert wrote:Just a quick check. When exactly you stop your triple therapy and when you had your breath test to confirm the eradication? You'll need at least 2-3 weeks gap for the breath test.
It was the day after I finished the triple therapy. I thought I was supposed to wait a couple of weeks. I already had an appointment scheduled and I called to reschedule a couple of weeks later but the nurse checked with the GI doc and he said it could be done that soon. When I went in I asked again and he insisted I didn't have to wait. I was very clear that I just finished the treatment the day before. Could getting retested that soon result in a false negative on the breath test?

Helico_expert
Site Admin
Posts: 4600
Joined: Wed Mar 02, 2011 7:20 am

Re: Newly diagnosed, about to start treatment...a few questi

Post by Helico_expert »

Yup. It's not right to do breath test straight after treatment. Because the breath test rely on the acidic stomach and the bacterial load. So, if you are taking PPI and antibiotics, then 1st, your stomach is not acidic and 2nd, the bacterial load will be low. So, the chance of false negative will be high.

tornado82
Posts: 73
Joined: Tue Jul 01, 2014 2:09 am

Re: Newly diagnosed, about to start treatment...a few questi

Post by tornado82 »

Yea breathe test so fast seems really odd. Makes me question GI doc a little here. Surely he knows you should wait a few weeks first. I would contact him and express my concerns, or even print off stuff from professional online sources to show him and then ask why his opinion differs from expert opinion.

When my anxiety plays up over various issues my appetite will also nose dive drastically. In order to keep my calorie intake up however I will start drinking Boost. They taste great and are packed with nutrients and are high in calories. Im wondering if you might consider drinking them if you cant eat so you at least keep your calorie intake up a bit and get vital nutrients. One thing Ive noticed too, because Ive been under weight my entire life, is taking Vitamin B12 tablets increases my appetite. I notice it just days after I start taking it, like my body craves food more than normal and I end up eating more. Instead of picking at food Ill actually feel like eating it. If you have a poor appetite and get in the habbit of not eating much, then Ive always felt my body tends to adjust to that, and Its hard to change it. You have to take some action to get your appetite back going. Id try taking some B12 and drinking boost to supplement your lack of solid food. You're lack of food to me sounds somewhat troubling, because I know how it affects me when Im in a similar state - Your body just goes down hill. Immune system weakens, you feel tired and have no energy, you start to just feel zapped of life. Your body cant go on like this for extended periods of time and remain healthy, especially when you lose enough weight that you enter the "under weight" category.

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