- When initial symptoms of gastritis appear (bloating, acid, nausea) ask to be tested for HP RIGHT AWAY instead of just taking acid-blockers (PPI) for weeks.
- Reasoning: I got PPIs first, which helped with symptoms for a while, but then made it much more complicated to test for HP properly - you need to stop PPI for >=4 weeks before you can reliably test for HP, this delays the actual treatment of the issue and you will also have to deal with a ton of extra acid in these 4 weeks since stopping PPI often results in even more stomach acid than normal for a while. It can increase the risk of getting false negative result which will make you run around in circles visiting doctors every week while feeling like crap but not making any progress because no one knows the actual cause of your problems (like in my case).
- Ask for a full biopsy, ideally including a culture to test for antiobiotic resistance of HP, to be done when undergoing endoscopy. Don't settle for less.
- Reasoning:My first endoscopy used a quick CLO test ONLY in the antrum area instead of full biopsy (probably due to cost reasons) and I received a false negative (judging by the fact that my symptoms continued and I obtained a positive result a year later eventually). In my second endoscopy a biopsy returned HP positive but no culture was created in the process, so I was given two rounds of antiobiotic resistance that both failed, whereas with prior analysis I could have immediately skipped those therapies and their side effects and went straight to one that has a good chance of working. Additionally, endoscopy is a fairly invasive procedure so you don't want to do it multiple times just because people were trying to save some cost at the wrong places when treating you.
- If in doubt after a HP negative test result, test again in a few months while not taking any medication, if symptoms are manageable. Ask for actual test values and thresholds.
- Reasoning: I got my first antiobiotics in 2018, more than 12 months after symptoms started, due to wrong doctor decisions and a false negative CLO endoscopy test and stool test. I breath-tested one month after the antibiotics and received a negative result. But a few months later problems started occuring again, although it didn't come to my mind it's still HP, which I found out another ~10 months later. So: Get actual measurement values and thresholds for each test, to see if a test is CLEARLY negative or maybe less conclusive. And if it's negative but you still feel bad, consider not starting PPIs again but rather waiting for another 1-2 months and retesting, so you can get rid of HP faster.
- Get informed about HP from review articles (research papers) and engage in discourse with your doctor to make sure you get the proper treatment.
- Reasoning: I was promised for two antiobiotic rounds in a row that it will 100% work each time, and each time it failed. To avoid this, get some info on possible treatments that the doctor might suggest even before visting him/her, so that if the doctor proposes it you can ask them about advantages/disadvantages and also suggest other options. For example, why not a treatment with Bismuth given this is recommended in some articles as first-line treatment instead of something that has <50% sucess rate in areas with metronidazole/clari resistance? This way you can make sure the doctor actually knows his stuff, actually thinks about your problem and then gives you the best treatment option. If in doubt, contact a specialist to get another opinion.
- Multiple doctors tell me HP transmission between couples is not possible. I think they are overconfident and we cannot exclude that as a possible way of transmission.
- Reasoning: I never had any stomach issues my first 26 years in life, and the problems started just months after dating my wife from China that herself had similar symptoms for years and got tested HP positive later on. Research is still ongoing as to how HP is transmitted, so we simply don't know for sure right know whether e.g. saliva (kissing) can transmit it, or fecal-oral route (pleasing your partner by licking their anus). Until then, I would suggest testing your partner for HP as well, refraining from fecal-oral contact, brushing your teeth and using mouthwash regularly. Make sure at the end that both partners are free of HP, not only the one with symptoms.
so I noticed more and more that people are often not treated correctly even in highly developed countries (i was treated in UK and Germany). GPs not having a clue about which antibiotics are actually still working nowadays and prescribing useless ones that will only give you side effects, doctors telling you that endoscopy found nothing and they can't do anything about your intense symptoms ("this is just functional dyspepsia - deal with it") - take everything with a grain of salt and be your own doctor to an extent. But inform yourself based on actually credible research articles, not some websites trying to sell natural remedies that supposedly magically cure you. If you can't understand any research articles or at least their abstracts, you should still trust your doctor since that is probably a better strategy than randomly trying stuff you read somewhere on the internet.