Reliable self-tests for H Pylori, and other questions

Hi CMX!

I was diagnosed with HP twice, in the last three years, via GI Map. I haven't truly addressed it yet, as it's lower numbers (but as per your question, what does that imply exactly?), though the second one had a virulence factor.

I'm not convinced it's causing my symptoms, but it might be. I know I should start treatment.

I am terrified to do ABX, though I'm going to try to do the newer HDDT, Amox and Vonaprazan, which supposedly has fewer side effects. One of my main complaints, constipation, seems to get agitated by every 'natural' remedy i've tried.

I also don't know if it's hormonal changes, motility, etc causing the gut/bowel issues. They're getting worse, though. As per your other question, about HP living below the gut, yeah, not sure! I've been told my constipation can be due to microbiome changes due to HP, but I think consensus is that they're still in the gut mucosa.

I also had terrible (LPR) reflux for many years, years ago, had an endoscopy and HP not detected, but there can be false negatives, and--I just don't know!

@electracat

Hi electracat, if you haven't done so already, for the LPR and any symptoms above the duodenum, I would advise doing a breath test, and for anything small intestines or below, a fecal test. I've never done a GI Map and don't know much about its reliability or usefulness in assessing related issues, but I know that a urea breath test is considered a gold standard for assessing whether H Pylori (hereon HP) has been detected at a threshold that can potentially cause issues in the stomach and above. As you are probably aware, the majority of the world has HP* but it often doesn't cause issues, but as I understand testing positive on a breath test indicates it's at a concentration in your upper GI that is not negligible. I don't know where you live but in my city (NYC) it's quite easy to book at the major labs (e.g. Quest or Labcorp) which can be referred by a doctor or self-purchased. As for anything below the stomach, it's less certain to me which test is best for that, since I tested negative on the fecal test but positive on the initial breath test and endoscopy, but I'd suggest trying a fecal test anyway since it seems it's considered more definitive than a GI Map in determining if there is a problematic HP infection.

Regarding the (false?) negative endoscopy result, false negatives may be possible since biopsies are only taken at certain locations and the bacteria may be unevenly distributed, as per this AI explanation: "The bacterial density can be reduced or the bacteria may be unevenly distributed, leading to missed detection in biopsies, so obtaining samples from multiple sites (e.g., antrum and corpus) and using additional diagnostic tests is recommended. "

This is also why a breath test is helpful - it checks all of the stomach at once instead of grabbing a sample here or there.

I don't think you should be concerned about sides from the antibiotics if you haven't tried them yet; as I understand, it's a minority who experiences noticeably bad sides. I did not experience any side effects taking antibiotics, at least at the time. Whether the periodic and easily-acquired (sometimes seemingly random) muscle/joint pain I've had since then is related, or an indirect effect due to nuking the gut biome, I'll probably never know, but in any case it has gradually improved and definitely preferable to the gastritis, ulcers, iron deficiency anemia and other GI risks from an active HP infection.

Here is what I was prescribed, in case it helps:
* 2 antibiotics for 2 weeks: amoxicillin (500mg\*2 twice/day, so 2g/day), with clarithromycin (500mg twice/day, so 1g/day) [for HP].
* PPIs for 8 weeks: omeprazole (aka Prilosec) 20mg\*2/day (so 40mg/day) for 2 weeks, then pantoprazole (aka Protonix, Pantoloc) 40mg\*2/day (so 80mg/day) for 6 weeks [for gastritis and multiple ulcers caused by HP].
* Iron ferrous gluconate (324mg\*2/day, so 648mg/day) for 3 months [for iron deficiency anemia that the HP infection eventually led to].

Since completing the above regimen, I have tested negative for HP on multiple tests including a follow-up endoscopy and breath tests, and have never had ulcer pain or gastritis reoccur. But I understand there are different HP strains (my strain was not specified; I asked the gastroenterologist but they said that's not something they test for) which can lead to different outcomes. Following a well-rated gastroenterologist's recommendation is usually a good bet.

Whether your symptoms are caused by HP or something else, it's uncertain at this stage, but since the GI Map suggests you MIGHT have HP, to me it makes sense to do more of the standard tests first, including the breath test, and if it's positive and there is no reason to suspect from other tests the symptoms may be caused by something else, then do an antibiotic regimen and see if your symptoms disappear after that.

I can't vouch for "natural" regimens I've heard about since I've never tried those, although I've seen some anecdotes that they successfully eliminated HP that way (actually tested negative after doing a natural regimen after testing positive). If it has a high rate of working, it seems enticing as it would avoid issues that some may encounter from antibiotics. But a course of antibiotics and PPIs are always the clinically recommended route, of course.

* When I say a majority of the world has HP, my guess is this is based on detectability by standard tests like the breath test, endoscopy or fecal. I wouldn't be surprised if HP existed in virtually everyone, even after antibiotics (seems almost impossible not to come across) but is only really detected by such tests when it reaches a certain threshold. This is what my GI map query partly alluded to: perhaps GI map has high sensitivity which is why it might detect low numbers of HP, whereas the number is not high enough to be detected on the other tests. Whether it can still be the cause of symptoms at such low numbers, I don't know.