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My insights on HP after 4 rounds of antiobiotics

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

My insights on HP after 4 rounds of antiobiotics

Post by RandomUser »

Hey, I just wanted to share with you all some tips/pitfalls on HP that I encountered during my >4 year long journey with HP, enduring 4 rounds of antiobiotics already and still waiting for confirmation that I am actually free of HP again, in the hopes that other people don't have to deal with HP for such an unnecessarily long time due to mistakes made by doctors, potentially creating long-term damage in the process too.
  • 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.
I researched a lot in the past few years because I was struggling a lot 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.

Helico_expert
Site Admin
Posts: 4244
Joined: Wed Mar 02, 2011 7:20 am

Re: My insights on HP after 4 rounds of antiobiotics

Post by Helico_expert »

Good summary.

here are some more explanation.
Usually people catch H. pylori when they are young. Your cell regeneration is fast. Your stomach acid may not be as strong. So children are most likely symptom free.

When you are over 18 or finished high school, you are most likely experiencing stress from work; from study; burning midnight oil; trying to complete task before due date; bills to pay; not having proper meal; lots of alcohol; etc.. your cell regeneration efficiency starts to decline. So from 18-30 years old, you are most likely to experience some mild symptoms, including ulcer.

As you get older, maybe 30-50, your repair mechanism gets worse, then you might experience more severe symptoms. Some damage may not be repairable as the wound has become scar.

deerema20
Posts: 1
Joined: Thu May 13, 2021 1:54 am

Re: My insights on HP after 4 rounds of antiobiotics

Post by deerema20 »

Thank you for sharing your experience!!

I completed treatment 2.5 weeks ago but still have some pain in those 2 sore spots in the abdomen (I believe I have both gastric and duodenal ulcer). I attribute it to stress because I otherwise eat super clean and am fit. I started having symptoms in Feb (2 sore spots mainly) and they got better after tx but I can't eat normal portions, because the pain comes back. Did you experience this?

I have since Feb lost weight almost to anorexia :( (I was on the thinner side before, had a hard time gaining weight after my mid 20s but now I'm even more thinner!). Did you guys lose weight? What about insomnia?

I am due to get retested next week to see if my H pylori was eradicated. Hopefully it worked.


Thank you.

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

Re: My insights on HP after 4 rounds of antiobiotics

Post by RandomUser »

still have some pain in those 2 sore spots in the abdomen
Sounds pretty similar to what I experience, one spot in the upper left abdominal area (left from your point of view) that feels close to the back, and one thats a bit lower, but to the right hand side (duodenum area?). What they found in my case is duodenal scarring a few months after problems started, so there probably was an ulcer there before. The gastritis (pain in left area) came a few months after the problems started, probably because there is just so much acid in general, but I'm not sure. After about 1-2 years I started having the lower belly problems with a stinging pain to the lower right of my belly button. So it seems like it starts affecting everything after a while. But good that you are tackling it now already.
and they got better after tx but I can't eat normal portions, because the pain comes back. Did you experience this?
For me it was upper left abdominal pain when my stomach was empty, and after eating less pain but more nausea and acidity. But it could be different between individuals. I would try eating regularly and often, but small meals at a time. That helped me to avoid the pain of an empty stomach and the nausea, lower belly bloating etc. with a full stomach.
Did you guys lose weight? What about insomnia?
I am also on the thinner side, but I didn't really lose weight. I could totally imagine losing weight though due to the nausea and other symptoms one typically gets after eating. I personally didn't have any insomnia. If you are HP negative and still losing weight I would definitely ask the doctor to check that out.
I am due to get retested next week to see if my H pylori was eradicated. Hopefully it worked.
Good luck to us both then!!! Good to talk with some other people that have similar issues :)

Seriphan
Posts: 9
Joined: Thu Jul 23, 2020 9:02 am

Re: My insights on HP after 4 rounds of antiobiotics

Post by Seriphan »

This post is incredibly helpful. I can tell you’ve been through the ringer with this issue. Did you kind of know all along you had h pylori but just kept getting false negatives? Did it make you question what was actually wrong with you?

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