Only registered users are allowed to post. To register, please click here

Should you have any problem in posting, registering, or login, please do not hesitate to contact the admin at Marshall.centre(at)gmail(dot)com. In the subject, please use "Help needed for www.helico.com"

Advertisement is not allowed. While we encourage discussion, please try not to promote your website, goods, or unproven treatment here.

This is a non-profit website. We will try our best to help anyone that has question about H. pylori and their treatment. We shall provide the most accurate answer about H. pylori. You can help us by clicking here to keep this forum alive.

Some useful guides
How to post in the forum?
Management of Helicobacter pylori infection—the Maastricht V/Florence Consensus Report
The 5th Chinese Helicobacter treatment consensus
How long should I wait before doing follow up breath/stool test?

If you are confirmed with H. pylori, in your convenient time, please help us with the symptoms survey that you are experiencing.
Symptoms survey
(contributed by frostyfeet)


此网站免费然您阅读。若想分享心得或提问,请先注册
若有困难注册,请联络站长 Marshall.centre(at)gmail(dot)com。标题请用 "Help needed for www.helico.com"
此网站不允许打广告。我们欢迎任何的讨论。但尽量不要推销没医学根据的网站,商品或治疗方案。
此网站是非盈利网站。我们会尽最大能力提供任何有关幽门螺杆菌的讯息。您的捐款可以让我们继续帮助更多的病人。

指南
如何贴文?
欧洲幽门螺杆菌治疗共识 5
第五次全国幽门螺杆菌感染处理共识报告
用药后,多久以后可以再做吹气测试?

Had HP for years without knowing? Please help!

There are several types of tests for H.pylori. The major ones have a their own forum.

Moderators: Toni, barjammar

RandomUser
Posts: 11
Joined: Wed Jan 13, 2021 10:11 am

Had HP for years without knowing? Please help!

Post by RandomUser »

Hey everyone,

I need your help - Most likely I have been running around with HP for over four years now almost constantly dealing with symptoms, most of the time without even knowing that I have it. I am very exhausted and also feel pretty depressed. I just finished another course of antiobiotics and need some advice on how to determine eradication/next steps with my doctor.

Here is a rundown of my history, to give some context. For my current concrete question, please skip towards the end of this post.

12/2015: Started a relationship with who is now my wife (born in China) - this is relevant since she had similar stomach problems in her childhood, supposedly had HP test negative many years ago but still from time to time had occasional reflux issues that never went away. Might have caught HP from her in these months
08/27/2016: Sudden onset: Lower belly stiff and bloated, loss of appetite, general discomfort
08/29/2016: Light stomach pain or dull pressure feeling there (towards the back)
09/02/2016: First doctor visit, just gives me PPI bc. HP is less likely than normal ulcer problem
09/13/2016: Another doctor visit. 28x Lansoprazole 30mg 1 per day. Blood and Stool Test is ordered
09/15/2016: Blood test, which later turns out to be mistakenly only for Anemia and Celiac diseases, NOT for HP. No anemia or celiac found. Stool test for HP, which turns out worthless because they didn't tell me to stop taking PPIs.
09/26/2016: Symptoms worsen: Nausea, very bloated lower belly, acidic taste in mouth, PPI only improves symptoms slightly
13/10/2016: Blood and stool test for HP. Dont remember blood result, but stool test HP NEGATIVE
11/18/2016: Endoscopy. No PPI usage, only a few antacids prior. CLO Test ONLY in antrum area shows HP NEGATIVE. Inflammation and scarring seen in duodenum, which would explain symptoms. No cancer. No specific causes found for the inflammation and symptoms. Am told eating habits and stress are factors. I get put on longer-term PPI, thinking this would heal soon.
11/23/2016: Ultrasound found nothing
Symptoms (bloating, stomach pain, nausea, mouth acidity, belly gurgles+farts) don't stop in 2017 => On and off on PPI (Lanso), which does seem to help a bit because it removes the excess acid, but doesn't go away
xx/01/2018: Decide to test for HP again as symptoms dont stop => Stop PPI => Extremely acidic mouth, tooth pain/sensitivity, bloating/farting. Doctor says normally this should have healed after a few weeks, doesn't diagnose me either though. Eating chocolate and acidic fruits makes it worse, only few minutes after eating - avoiding this.
xx/01/2018: Stool test - HP POSITIVE. Why were stool AND endoscopy NEGATIVE before? No one seems to know. Starting with PPIs again after test to alleviate symptoms. Starting with Triple Therapy (Omeprazole+Clarithromicyn+Penicillin 7 days, after that continue with PPI).
Feeling great for months after finishing triple therapy - almost no symptoms
21/03/2018: Stool test to confirm eradication, four weeks after stopping antiobiotics - HP NEGATIVE. Everything seems fine for now.

06/2018: Start having a dull "pressing" pain at the top of my lower belly right below the ribcage (different symptom than before), especially before meals.
06/2018: We decide to test my wife for HP since she also experiences some reflux and slight stomach discomfort, especially in the recent few months, and due to transmission risk. Stool test shows HP POSITIVE FOR MY WIFE - takes normal 7-day Triple Therapy
2018: Wife still tests HP POSITIVE, gets another type of antibiotic.
2018: HP NEGATIVE FOR MY WIFE after second antiobiotic treatment.
07/23/2018: Gastrologist decides to do breath test to check whether HP is actually gone. Even if it's gone, healing can supposedly sometimes take many months, can manage symptoms with PPI. Breath test HP NEGATIVE. Looks like both me AND my wife are negative.
07-10/2018: Old symptoms coming back again, PPI only helps to a degree, also lower belly has dull pain - lower gut gets affected by excess acidity at the top? Also a stinging pain to the right (from my point of view) of my belly button sometimes occurs, always at the same location.
03/2019: PPI (Omeparzole/Lanso) 20mg/day, alleviates symptoms (especially bloated belly is now much flatter), taking this for a few months
11/2019: After a period of few symptoms, start taking Omeprazole to get rid of stomach pain and lower belly bloating for a few months
05-08/2020: Mild stomach pain/pressure feeling + neausea after eating, especially int he morning, gets quite frequent => Decision for another endoscopy.
11/18/2020: Endoscopy. Doctor right after says my stomach looks normal, can only conclude functional dispepsia or a nerve sensitivity for now. HP biopsy later finds HP POSITIVE.
01/06/2021: Start Triple Therapy: Again PPI + Clarithromycin + Amoxicillin 7 days - told the doctor I had this treatment in 2018, but wanted to go ahead anyway despite potential resistances. Symptoms immediately go away upon starting therapy.
01/12/2021: Symptoms come back: Stomach pain, nausea quite strong, especially in the mornings and after breakfast, stinging next to belly button.

Today: Doctor orders blood test, will discuss results with him on Tuesday. Now I am reading in "Clinical Rationale for Confirmation Testing After Treatment of Helicobacter pylori Infection: Implications of Rising Antibiotic Resistance" that a blood test can not distinguish between current and past infection and can not be used to confirm eradication. How should I discuss this with my doctor on Tuesday and interpret a positive or negative result? I am not sure the doctor knows what he is doing here, and I had a lot of bad experiences with doctors and false test results in the past...

Also how to avoid infecting each other? Could it be I got it from her way back in 2016? I did a few times orally please her in bed so maybe the fecal-oral route is likely here? Also should we avoid sharing food? Two doctors here said that infecting each other is not going to happen or very unlikely, but I can't really believe that - then where did I get it from (and billions of other people)?

Any help is appreciated.

Helico_expert
Site Admin
Posts: 4247
Joined: Wed Mar 02, 2011 7:20 am

Re: Had HP for years without knowing? Please help!

Post by Helico_expert »

thanks for sharing the detail history.

oral hygiene, such as brushing teeth, is the best way of avoiding infecting each other.
then, basic hand washing after toilets and avoid sharing food, can further reduce the risk of transmission.

You are right about blood test. It cannot be used to confirm the eradication. But it is still informative for your doctor if the breath/stool test is accurate.

I am unsure why is the biopsy that you did previously showed negative. What was it exactly said in the histology report? did they do a specific immuno stain or check the activity of the inflammation?

next time, try to get an actual reading of the test result. simple positive or negative is probably not good enough. I think it's important to know how negative is negative or how positive is positive. For example, if the cut off value is 50 dpm and you got 49 or 51 dpm. what would your doctor interpret?

RandomUser
Posts: 11
Joined: Wed Jan 13, 2021 10:11 am

Re: Had HP for years without knowing? Please help!

Post by RandomUser »

Thanks for your feedback!

I will take the hygiene into account and will not share any food with my wife anymore, just to be safe. Also we will get her tested with a breath test in a month or two after I hopefully get rid of it so we know (at least to resonable certainty) that we're both clear.

You have a good point about the levels, maybe I was barely below the level above which its considered positive, but nobody really talked about this with me, and reports usually just said positive/negative...

My doctor said he used two indicators on the blood test now, one just shows whether you had or have the infection (antibodies) but there was a second one that indicates whether you currently still have it - I didn't know about this. Unfortunately I didn't catch the name of this indicator and we didn't talk about concrete level measurements yet. I could ask next time? Blood test indicated I still have it according to the doctor, so now I am on 250mg Amoxi + 3x per day 400mg Metronidazole + 40mg Pantoprazole for 7 days. I got medicine for 10 days, should I ask my doctor if i should do it longer? Also feel quite nauseous all the time, sometimes dizzy/weak, no appetite, cold hands/feet + slight headache/sick feeling, but I am powering through to get rid of this now...

Asked my doctor about it being suboptimal that no culture was done during the last endoscopy so we know which antiobiotics worked, but he wasn't concerned at all and says he is sure that this second antiobiotic will work now. That's weirdly confident about HP not being resistent to this, don't you think? Do you have research showing what my chances are for eradication?

In the previous endoscopy the did a CLO test, and visually saw inflammation in the stomach, particularly duodenum. That's all I understand. I will see whether I can get some more info from the report!

RandomUser
Posts: 11
Joined: Wed Jan 13, 2021 10:11 am

Re: Had HP for years without knowing? Please help!

Post by RandomUser »

Also do you recommend insisting on a breath test (or a different test) after antiobiotics treatment to confirm eradication? My doctor follows a "come back when you have symptoms" approach, but I don't want to risk running around with this for even more months thinking I could heal now when I actually don't...

Helico_expert
Site Admin
Posts: 4247
Joined: Wed Mar 02, 2011 7:20 am

Re: Had HP for years without knowing? Please help!

Post by Helico_expert »

Pantoprazole + Amoxicillin + Metronidazole is a standard triple therapy.
This used to be a very good treatment with over 80% success rate.
As time passes, the cure rate of this treatment has dropped significantly. Depending where you are, in Europe, this treatment is already abandoned as the cure rate is below 60%.

I heard about a special blood test that can tell if you have HP now. I havent grasp the concept yet. Not sure how true it is.

What happened to the CLOtest? did you get a positive result from CLOtest?

I agree that you need breath test to follow up after treatment.

RandomUser
Posts: 11
Joined: Wed Jan 13, 2021 10:11 am

Re: Had HP for years without knowing? Please help!

Post by RandomUser »

Hey,

many thanks for the info and time you invest. I am in Germany, so maybe success rate is not so high anymore here because of high antiobiotic usage/resistances? My doctor seemed super confident about it working though, but I am getting the impression he just doesn't really think about it that much or care since that would require extra effort? Anyway, will return to the doctor soon, I just finished my antiobiotics (horrible nausea all the time but I pushed through). Then I will ask for a breath test.

Interesting that there is supposedly a new blood test method out. Haven't found anything on the internet about it either - all info sites explicitly say hwo a blood test cant distinguish between current and active infection. Well, that would be good news, but I will probably insist on a breath test at some point anyway (1 or 2 month after now stopping all medicine).

The CLO test was done during the endoscopy way back in 2016 (see my history), that was negative, surprisingly. Which is why this whole thing was much more painful than it otherwise needed to be. I know of people here in Germany that caught it, immediately detected it, used two or three antiobiotics and it was over, no lasting damage.

If my second line treatment now didn't work out, what would the plan be in your opinion? Directly to third line antiobiotics (bismuth etc.) or another endoscopy + culture? So annoying they didn't do the culture already end of last year where I had an endoscopy with positive biopsy result, no??!

RandomUser
Posts: 11
Joined: Wed Jan 13, 2021 10:11 am

Re: Had HP for years without knowing? Please help!

Post by RandomUser »

One urgent question: I got medicine lasting for 10 days although my doctor said use it for 7 days. Does taking it for 10 days increase the chance for eradication? In that case I might just take 3 more days now! Thank you!

Helico_expert
Site Admin
Posts: 4247
Joined: Wed Mar 02, 2011 7:20 am

Re: Had HP for years without knowing? Please help!

Post by Helico_expert »

The standard therapy is 7 days.
For some resistance case, the doctor would prescribe 14 days.

we have been giving 10 days treatment and our cure rate is high. Then again, we only see resistance case and we only provide personalised treatment.

So, in short, 10 days is better than 7 days (slightly).

RandomUser
Posts: 11
Joined: Wed Jan 13, 2021 10:11 am

Re: Had HP for years without knowing? Please help!

Post by RandomUser »

An update on this - I finished the Amoxi+Metronidazole treatment after 9 days, but didn't really feel better. Went to the doctor just a week after stopping, they immediately did a blood test and told me that the levels were still high (there are supposedly two different levels, and one of them is accurate enough to already tell that it didn't work whereas the other one slowly decays after eradication - didnt know that??), so they referred me to a gastroenterologist.

Called the gastroenterologist, and immediately was told i should wait for 8 weeks before doing a stool or breath test, to really make sure that it's still positive. Did a breath test and it was positive. Talked to the doctor and he prescribed me Pylera (Tetracylin + Metronidazole + Amoxicillin) 10 days + 2x20mg Omeprazole per day. He said this has 90% success rate and creating a culture via biopsy to identify the best drug to use is not very worthwhile in my case since it's either Pylera or Ciprofloxacin as my last options, the latter of which he wouldn't like to use due to some other side effects, and due to the high success rate of Pylera.

So I finished Pylera and will then test again, doctor said in 3 months, but will probably test in 2 in case I get more symptoms. For now I am feeling better: Still a bit nauseous after eating sometimes, and a slight stinging sensation next to my belly button, but not so much burping, bloated stomach, upper abdominal pain anymore.

I was still left with two questions. The gastroenterologist told me that my symptoms are of "functional" nature and I can expect to have them for the rest of my life, as if this is something completely independent of the Pylori infection, which obviously scared me as I am just 30. I told him that I felt great for a few months after taking my first antiobiotic in 2018, but he suggested this might be Placebo effect. I thought my symptoms are almost exclusively from Pylori and I can get rid of all of them after eradication given a few months time, is this not true? Should I get the stinging pain next to my belly button checked out by endoscopy of the gut if it doesn't go away soon after eradication?

The second question is this: The doctor also said I don't have any options beside Pylera. Looking at the research though there is Furazolidone and Rifabutin, as well as potentially better PPIs (Vanoprazan, Rabeprazole or just taking a higher Lanso/Ome dosage since I read that rapid metabolizers tend to need more acid suppression - since I am European and RMs are common there, this might have been the crucial factor here, and also explain why my Chinese wife got rid of it with the second-line Metronidazole treatment as a medium/slow metabolizer, no?). Is my doctor right here or am I actually better informed here and I should push for such a treatment in case it's not gone now?

Thank you for your help!!!

RandomUser
Posts: 11
Joined: Wed Jan 13, 2021 10:11 am

Re: Had HP for years without knowing? Please help!

Post by RandomUser »

Adding on to this, the doctor said it's more likely I caught HP from my mother when I was young than from my wife just a few years ago, as it doesn't really transmit via saliva for example, only from actual vomit. But again, considering I had no digestion problems at all for 26 years and then a sudden onset of problems a few months after starting to date my wife, it seems much more plausible to me that I got it from her or at least only got it at that time and not before, given that she had similar symptoms for years, and also found HP positive before she was treated in 2018.

So along with the test I will be doing in 2-3 months I will also have my wife tested to make sure we're both negative and can't reinfect each other again, despite multiple doctors telling me that transmission between couples is basically "impossible". Just like my GP gave me two antiobiotics (one of which I already had in 2018) and told me it will certainly work when I asked for eradication rates, it seems like many doctors are not well informed about HP... Another baffling thing is that I get amoxi+clari and amoxi+metronidazole therapies from my doctors when I read in research articles from 2014 that the recommended FIRST-line treatment contains bismuth as only metronidazole/clari+amoxi is not nearly effective enough anymore...

Post Reply

Return to “Diagnosis and Testing 检测与实验”